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An ethnographic study of profoundly mentally retarded deinstitutionalized adults Lee, Calvin 1988

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AN  ETHNOGRAPHIC STUDY OF PROFOUNDLY MENTALLY RETARDED DEINSTITUTIONALIZED  ADULTS  by CALVIN L E E B.A., Simon Fraser University, 1969 M.Ed., The University of British Columbia, 1977 A THESIS SUBMITTED  IN PARTIAL FULFILMENT OF  THE REQUIREMENTS FOR THE DEGREE DOCTOR OF  OF  EDUCATION  in THE FACULTY OF GRADUATE STUDIES (Department of Counselling Psychology)  We  accept this thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA February, 1988 © CALVIN LEE, 1988  In  presenting  degree  this  at the  thesis  in  University of  partial  fulfilment  of  of  department  this or  thesis for by  his  or  requirements  British Columbia, I agree that the  freely available for reference and study. I further copying  the  representatives.  an advanced  Library shall make it  agree that permission for extensive  scholarly purposes may be her  for  It  is  granted  by the  understood  that  publication of this thesis for financial gain shall not be allowed without permission.  Department The University of British Columbia Vancouver, Canada  DE-6 (2/88)  head of copying  my or  my written  ABSTRACT This  study  interaction  was  concerned  of profoundly  with  the behaviours,  mentally  retarded  actions,  non-verbal  and  patterns of  deinstitutionalized  adults  (PMRs). The methodology utilized field research techniques which are observations of participants in their natural setting. The observations were of five profoundly retarded deinstitutionalized adults and took place over a three month period in the participants' group home and day program. The  observations were recorded daily in a field note book and were later  transcribed into a protocol format. The protocols were then categories were developed  by the researcher through  coded. The coding  abstractions which emerged  from the data. The exhibited understood  coding categories revealed insights into the PMRs. The participants a heirarchical social order, displayed consistent seating patterns, and property  ownership. The participants were noted  to anticipate daily-  routines such as meals, outings, and bedtimes. The  researcher  observed  preferences  by  the individual  participants for  specific staff members. One participant appeared to display a heterosexual erotic preference  for one staff member. Autoerotic sexuality  participants. Individual preferences  was  observed  in three  for food, music, activities, and people  were  also displayed by the participants. Stereotypic  behaviours  were  prevalent behavioural  patterns  exhibited by  participants who had individual and unique stereotypic motions. The coding of the stereotypic  behaviour  revealed  that  emotional  stereotic movement. The researcher hypothesized  responses  were  present  during  that stereotypic movement  was  an observable response to the inner thoughts or ideations of the participants. The  11  literature montonous  on sensory deprivation environment  develop  suggests their own  that  individuals when  sensory  data  exposed  to a  (hallucinations) in the  reticular area of the brain. Stereotypic behaviour appears to be an adaptation by the individual to monotony through study  suggests  that  the degree  self generated of environmental  stimuli. The data from this stimulation  influences the  prevalence and incidence of stereotypic behaviour. There were data to support the hypothesis that the participants' stereotypic movement was interactive with the degree  of environmental  stimulation  and the specific  participant to the stimulation.  111  like  or dislike  of the  TABLE LIST  OF  OF  CONTENTS  TABLES  vii  C h a p t e r I. I N T R O D U C T I O N A. Background to the Problem B. Back W a r d s C. The Profoundly M e n t a l l y Retarded D. The S t u d y E. Sociological a n d Anthropological Investigations of M e n t a l Retardation F. The Purpose of the Study G. Major Concepts a n d Definition O f T e r m s 1. M e n t a l Retardation 2. Sensory D e p r i v a t i o n 3. Institutionalization/Deinstitutionalization 4. Stereotyped B e h a v i o u r 5. Emotions 6. Inside/Outside 7. A d a p t i v e / M a l a d a p t i v e B e h a v i o r 8. Symbolic Interactionism 9. The P a r a d o x of D e p r i v a t i o n H. S u m m a r y  10 14 15 17 18 19 20 21 22 23 24 26 27  C h a p t e r II. R E V I E W O F T H E L I T E R A T U R E A. The Profoundly Retarded B. Stereotypic B e h a v i o r 1. The D e p r i v a t i o n Theory 2. The C e n t r a l Nervous S y s t e m D a m a g e Theory 3. T h e Developmental Theory 4. L e a r n i n g Theory 5. S u m m a r y C. Institutions 1. A r g u m e n t s F o r Deinstitutionalziation 2. Pro-Institutionalization A r g u m e n t s 3. N e u t r a l Position O n Institutionalization 4. Research Results O n Deinstitutionalization 5. S u m m a r y D. Deprivation E. Emotions  29 29 34 34 37 38 39 39 40 40 43 44 44 45 47 54  C h a p t e r H I . M E T H O D O L O G Y : S E C T I O N I: T H E F I E L D R E S E A R C H TRADITION A. The F i e l d Research Tradition B. T h e H i s t o r i c a l Development C. Anthropological Models of F i e l d Research D. Sociological Models of F i e l d Research E. The Epistemology of Field Research F. Research Techniques E m p l o y e d i n Field W o r k G. Reflexivity iv  1 1 2 5 8  58 58 59 61 62 64 65 68  H. Grounded Theory I. Summary  69 70  Chapter III. METHODOLOGY: SECTION II: RESEARCH DESIGN A. Field Research and the Profoundly Mentally Retarded  72 72  Chapter III. METHODOLOGY: SECTION III: THE RESEARCH METHODOLOGY A. The Sample and the Case B. Confidentiality and Research Consent C. The Role of the Researcher D. Data Collection and Research Techniques 1. The Field Journal 2. The Field Notebook 3. The Protocols 4. Data Analysis 5. Data Analysis Techniques 6. Summary  75 75 77 78 83 83 85 86 87 89 98  Chapter IV. DESCRIPTION A. Description of the Physical Setting B. The Daily Activity Schedule C. First Impressions D. Individual Participant Descriptions E. Discussion and Analysis of the Participants 1. Inside 2. Outside 3. Boundary Overlaps 4. Discussion  99 99 102 103 104 130 132 135 137 139  Chapter V. ANALYSIS AND INTERPRETATION OF THE DATA A. The Inside Category 1. The Inside Reticular Category 2. The Inside Physical Category B. The Outside Category C. The Boundary Overlap Category D. Discussion of the Coding Categories E. The Role of Emotions F. Summary  142 144 144 150 153 161 163 168 169  Chapter VI. THEORETICAL IMPLICATIONS OF THE STUDY A. Conceptualization and the Nature of Humankind B. Limitations of the Study C. Implications of the Study D. Implications for Future Research  171 174 177 177 179  REFERENCES APPENDIX  A: RESEARCH  183 CONSENT FORM  v  191  APPENDIX B: OBSERVATION APPENDIX C: EXAMPLES  SCHEDULE  OF OBSERVATION  193 PROTOCOLS .. 196  APPENDIX D: FLOOR PLAN OF GROUP HOME AND DAY PROGRAM  vi  206  LIST  OF  TABLES  Table 1: Placement of the Mentally Retarded in British Columbia  2  Table 2: Number of Community Homes in British Columbia  4 -  Table 3: Subtypes of Mental Retardation by IQ Level  17  Table 4: The Decline of Institutional Placements Between 1984 and 1986  76  Table 5: The Admissions, Discharges, and Closure of Institution X 1983 to 1985  76  Table 6: The Type of Residential Facility Residents from Institution X Were Placed  76  Table 7: Daily Schedule  102  Table 8: Schematic Diagram of Coding Categories  143  vii  CHAPTER I. INTRODUCTION  A. BACKGROUND TO  THE  PROBLEM  Institutions for the mentally (Schreenberger,  1981). The  placed in group homes and  retarded  mentally  are being  retarded  are  closed in North America  being  deinstitutionalized  and  private care homes in residential neighbourhoods. The  rate of deinstitutionalization in Canada for mentally  retarded persons, after  1987,  is projected at ten percent per year (Canadian Association for Community Living, 1986). Current 2000 there  projections are that over the next thirteen years or by the year  will  not  be  an  institution for the  retarded  left  open  (Canadian  Association for Community Living, 1986). Deinstitutionalization has been occuring for the mildly retarded for the past twenty years (Lakin et al., severely, profoundly, and  1981). More and  more the institutions are places for  multiply handicapped persons, and  now  it is their turn  to come to the community. It is predicted that homes on residential city streets will  become  the  group  homes  for  severely  and  profoundly  retarded  adults  (Schreenberger, 1981). The  movement  of  the  mentally  retarded  from  community has been occurring in British Columbia. The in British Columbia has 1980-1986. Table increase  1,  been reduced by  shows  in community  the  decline  placements for the  the  institutional  35  during  to a high of 1,868  in 1986  the  placements  same period. Community  placements in the same time period grew in numbers from a low 1981  to  or an increase of 470  period  and  the  residential  of 1,398  in  community placements  (British Columbia, Annual Reports, Ministry of Human Resources, 1980-1986).  1  the  institutionalized population  approximately in  institutions  2  Table 1: Placement of the Mentally Retarded in British Columbia Year  Institutional Placements  Community Placements  1985-86  987  1868  1984-85  1016  1590  1983-84  1308  1555  1982-83  1339  1492  1981-82  1481  1398  1980-81  1526  1409  Source:  (British Columbia, Annual Reports, Ministry of Human Resources, 1980-1986)  This study is concerned with profoundly  retarded deinstitutionalized adults.  The  profoundly  retarded comprise a small percentage of the total population of  the  mentally  retarded.  They  represent  a  majoritj-  population (Cleland, 1979; Snell, 1982; Westling,  of the institutionalized  1986). Predictably they  present  the most serious difficulties for community placement and integration (McCarver & Craig, 1984).  B. B A C K WARDS The on  profoundly  "back  wards"  retarded are institutionalized at an early age and placed  often  institutional experience photographed  (Blatt  &  with  the severely  retarded  (Cleland,  1979). The  of the back wards has been anecdotally documented and Kaplan,  1966: Bogdan  &  Taylor,  1982; Braginsky  &  3 Braginsky, 1971; Cleland, 1979; Thompson &  Grabowski, 1977). The description  of life on the back wards does not bode well for the assimilation of this group into the community. Examples of anecdotal narratives from visitors to back wards read; The combined smells of antiseptic and excrement were overpowering. Haunting screams filled the air. An overwhelming desire to flee accompanied the turning of the key to the locked ward door. And there they were, an anonymous mass of unwanted humanity. The images were unforgettable: some nude, but most in baggy institutional garb; several in straightjackets or tied to long wooden benches; all with close cropped hair; many with scars; some hunched over; some drooling (Bogdan & Taylor, 1981, p. xi). Along the seventy-foot wall of the ward were seated approximately fifteen men huddled in the fetal position, with their heads between their knees. Most of them sat totally still, a few rocked from side to side, a few rocked forward and backward. Beneath half of the chairs were puddles of urine. The room reeked of urine and feces, and feces were smeared over the floor, over the arms and legs, and on the trousers and shirts of numerous residents. Approximately half of the men were partially or totally unclad (Thompson & Grabowski, 1977, p. ix). In sum, Ward Y and its inhabitants constitute a staggering visual, auditory, and olfactory assault on the presupposedly invariant character of the natural normal world of everyday life. Here, to a monumental degree, things are different (McAndrew & Edgerton, 1964, p. 313). There is a Hell. It is on earth. In America we have our own special inferno. (Blatt & Kaplan, 1966, p. ii). This, anonymous mass of unwanted humanity, is coming to the community from the back wards. Questions as to who what they will do, and how need  to be  answered.  Little  the profoundly mentally retarded are,  they will assimilate into residential communities, all is known  about the profoundly  retarded  in the  community; The bulk of our limited knowledge about the profounds derives from research on institutionalized samples. It is evident that research on the noninstitutionalized population is needed (Cleland, 1979, p. 16).  4 The goal to close the institutions seems laudable given the reports of the inhumane conditions of back ward life (Blatt & 1982;  Cleland,  1977). The dignified  1979;  McAndrew  institutions  services  might  for the  &  well  Kaplan, 1966; Bogdan &  Edgerton, 1964; have  profoundly  been  mentally  Thompson  redesigned  &  Grabowski,  to provide  retarded.  Taylor,  fair  and  Especially, given  the  reports of their behavior and need for service (Cleland, 1979). This has not been the case. The mentally  retarded will be deinstitutionalized on moral, political, and  philosophical grounds rather than on empirical evidence (McCarver & Craig 1984). The move to the community has meant smaller residential units of four to  six bed  group  homes  in British  Columbia.  The  number  of community  placements in British Columbia is traced from 1981 to 1986 in Table 2.  Table 2: Number of Community Homes in British Columbia Year  Number of Homes  1  Number of Residents  Average Size  1985-86  449  1868  4.16  1984-85  387  1590  4.11  1983-84  374  1555  4.15  1982-83  323  1492  4.62  1981-82  283  1398  4.94  Homes include all forms of proprietary residences, private hospitals, licensed and unlicensed boarding homes, unlicensed family homes, long term care facilities, nonprofit operated group homes, training centres and semi-independent living homes (British Columbia, Annual Report, Ministry of Human Resources, 1981-86). 1  The four  and  average communitj' home size range in British Columbia five  residents.  Size  can  be  a  major  factor  when  is between  coupled  with  resident/staff ratios; On these so-called "back wards" where the PMR were crowded together, aggression levels were often very high and those who bit others were often, not infrequently rendered harmless by the removal of all teeth! So thin were the ranks of houseparents and so harrassed and desparate were the professionals that radical procedures were often required (Cleland, 1979, p. 70).  The size and staff ratio may of the profoundly mentally  well be important variables in the treatment  retarded. However, perhaps more important  are the  variables that include programs, individualization of care practices, and meeting of personal  needs. Size  and  staff  personalization of services. The become a prison or an  ratio  will  not  group home on  guarantee a  adequate  residential  institution. Whether or not community  care  street may  and still  living in group  homes for the long term institutionalized profoundl)' mentally retarded is a viable and obtainable goal is a matter to be researched and not assumed. Deinstitutionalization can be seen as major, or very minor, changes in the circumstances of life. All too often the goals plans are stated in terms of the places from which people are moving rather than the quality and nature of the places to which they move (McWhorter & Kappel, 1984, p. 9).  C. T H E  PROFOUNDLY M E N T A L L Y  RETARDED  Little is known of the lives of the profoundly mentally retarded. Often the severely and profoundly retarded are for the purposes of research, education, and habilitation, grouped together as one unit. This practice has been discouraged by some authors (Cleland, 1979; O'Grady & Talkington, 1976). Among certain research and professional workers in the field of mental retardation, there is a tendency to lump the profound and severe levels of retardation together for the purposes of research and placement (O'Grady & Talkington, 1976). This is an indefensible practice and most who are experienced with both categories adhere to Grossman's (1977) distinction of profound and severe (Cleland, 1979,  6 p. 4). This research is concerned and  throughout  the  deinstitutionalized  text  non-verbal  solely with the profoundly  PMR  is  profoundly  used  to  mentally  denote  mentally retarded the  retarded  longer  adults that are  term the  participants in this research project. The  distinction between the severe  important. The behavior,  profound  level of retardation is  reason is that the severely retarded do differ in their adaptive  verbal  (Cleland, 1979;  and  language  acquistion,  Snell, 1982;  descriptions of the PMR  and  performance  Westling, 1986). Who  on  intelligence  tests  are the PMR? The following  are quoted from previous researchers:  They have eyes but they see not; ears but they hear not; they have no intelligence and no consciousness of pleasure or pain: in fact, their mental state is one of entire negation. (Tregold, 1937) They would be equally helpless and ill-adapted in a society of savants and in a society of savages. (Kanner, 1942) Left to his own resources, even in a grocery store, the profoundly retarded person dies within a matter of days of starvation if he does not meet with accidental death before that. (Bowman, 1968) (Cited in Cleland, 1979, p. 2). They are not toilet trained; aggress towards others; do not attend to even the most pronounced social stimuli; self mutilate; ruminate; do not walk, speak, hear, or see; manifest durable and intense temper tantrums; are not even under rudimentary forms of verbal control; do not imitate; manifest minimally controlled seizures; and or have extremely brittle medical existences (Sontag, Burke, & Yorke, 1973, p. 21).  These  descriptions of the PMR  are not optimistic. The  content of the above  reports strongly suggest that, institutionalization is perhaps the best care medium available this group. The (Cleland, 1979,  research on the PMR  is mostly in institution settings  Snell, 1982). Little is known about the PMR  who  reside in the  community. What is known is listed below. 1.  In institutional settings the PMR behavior (Baumeister,  do  perform  a great deal of stereotypic  1978; Baumeister & Foreman, 1976; Cleland, 1979).  2.  The PMR  do not develop language (Cleland, 1979; Westling, 1986).  3.  It is unlikely that any other classification of the mentally retarded have as varied an etiological representation as the PMR  (Cleland, 1979;  Snell,  1982;  Westling, 1986). 4.  5.  The  PMR  exhibit aggressive  self-injurious  Taylor, 1981; Cleland, 1979, Thompson &  The  are the most commonly institutionalized  PMR  The  PMR  Two other  1978;  Grabowski, 1977). and  at the earliest  age  are the most medically fragile and the average life expectancy is (Cleland, 1979; Miller, 1975).  habits, pica (eating of objects such as dirt, paint, cigarette butts, or seemingly  inedible objects) and  uncommon in the PMR 8.  (Baumeister,  Craig, 1984).  38 years of age for an institutionalized PMR 7.  behavior  Bogdan &  (Cleland, 1979; McCarver & 6.  and  Little  is known  laboratories  coprophagy  (eating of feces) is not  (Cleland, 1978).  about  (Baumeister,  the  PMR  outside  1978;  Cleland,  PMR  is estimated  of  1979;  institutions Meyers,  and  1978;  research Taylor  &  Bogdan, 1981). The  prevalence  (1973) and  Eyman  of the and  Miller  between 130,00 to 150,000 PMR (1975) found  in a study  (1979). Cleland  at .5  per  1000  (1977) estimates  by  Mercer  there  persons in the United States in 1977.  in the western United  States that 92%  were Miller  of the  PMR  population were in institutions and convalescent hospitals. In  summary  the  PMR  are  a  small  proportion  of  the  population  of  8 mentally  retarded  and are a heterogenous group of people with little known of  their daily lifes outside of institutional settings.  D. T H E STUDY This  study  is a  deinstitutionalized PMR  first  step  along  the road  to understanding the  in their natural environment outside of an institution as  residents of a group home. It is a study of the patterns, activities, and habits that form  their daily lives. The purpose of the study  abstractions group  for description and the generation  of deinstitutionalized PMR  adults  is to develop analytic  of theory  in a group  about the life  of a  home. The intent is  to  observe their new life and develop descriptions of their lives, in contrast with the reports  in the literature,  of descriptions  of back  wards.  Cleland  (1979),  Baumeister (1978), and Taylor & Bogdan (1981) call for studies of the PMR in their natural ecology and in the contexts of their activities. The research  PMR subjects  self-injurious  have due  behavior  possibly  been misunderstood  to the nature (SIB),  of their  aggression,  pica,  and not been included as  unusual  behaviors  coprophagy,  and  such as; stereotypic  movement: Another reason that could be advanced is that the grossly deviant behavior observed in the profoundly retarded of any life age so overwhelm our social and cultural overlearnings that we are blinded to whatever their strange behaviors are trying to tell us (Cleland, 1979, p. 18). Whatever the reason, the PMR the  same  extent  that  the mild  participated as research subjects:  have not been the subject of research to  and  moderate  levels  of retardation  have  9 The mentally handicapped of severe and profound degree, who till recently received little more than custodial care, now claim our attention for an improved quality of life. Surely it is more than rhetoric to list the right to be research subjects as an essential right of severely and profoundly retarded people, for the basis of improving their lot resides in theory and data (Meyers, 1978 p. iii). The  PMR  have for too long been thought of as objects of pity, dread,  fear, or ridicule  (Wolfensberger,  prejudices. Yet, even developed  an  empathic  retarded  have  not  1972).  researchers, who perspective and  extended  their  Ignorance through  qualitative  advocacy  empathy  creates these  emotions  methodologies,  and have  role for the mildly mentally  and  understanding  to  the  PMR  population. There are few sights more pitiful than the children who live in institutions for the mentally retarded. The feeling is inescapable when one sees the profoundly retarded inmates, incapacitated, needing almost total care. Yet it is, perhaps more acute at the sight of the mildly retarded child. One's pity for the profoundly retarded is somehow tempered by the obvious nature of the deficits and one is relieved that institutions exist which assume this human burden (Braginsky & Braginsky, 1971, p. 11). The intention of ths study is to move past pity, fear, dread, and ridicule to understanding. The researcher began with uncertainty about whether the world of  the PMR  was  understandable or whether it was  fringe of life that was  a chaotic existence on the  incomprehensible to an observer. The  literature of the behavior of the PMR  discussion in the  on the back wards did not alleviate the  researcher's concerns regarding this matter. The  research goal seemed to be to  understand the nonunderstandable; Profound retardation, by definition, means "unfathomable" and, in large measure, we are ignorant of their wants, hopes, and fears (Cleland, 1979, p. xi).  10  E.  SOCIOLOGICAL  AND  ANTHROPOLOGICAL  INVESTIGATIONS  OF  MENTAL RETARDATION The  degree  of  ignorance  and  lack  of  knowlege  on  the  PMR  in  noninstitutional settings was a challenge for the researcher. The research project was based on seven classic studies of sociological analysis of mental retardation which explored the labeling and meaning of mild mental retardation; 1.  Christmas in Purgatory, Blatt & Kaplan, 1966  2.  The Cloak of Competence, Edgerton, 1967  3.  The Cloak of Competence: Years Later, Edgerton & Bercovici, 1976  4.  The Cloak of Competence After Two  Decades, Edgerton, Bolinger, &  Herr,  1984 5.  Hansels and Gretels, Braginsky and Braginsky, 1971  6.  Labeling the Mentally Retarded, Mercer, 1973  7.  Inside Out, Bogdan & Taylor, 1981. All of the above works are primarily studies of mildly retarded persons.  The non verbal profoundly retarded population were not included in these studies. These seven studies were break through works in that each study revealed an understanding of mental retardation that awoke the reader to the world of the person labelled mentally retarded. Blatt and Kaplan's (1966) photographic account of the institutional treatment of the mentally retarded sensitized the reader to the deplorable conditions of institutions. This series of photographs institutions  in four  different  states. Blatt  and  Kaplan  were of five  photographs  stated the  institutions were a purgatory for any human being. Edgerton's longitudinal study of mildly handicapped deinstitutionalized adults sensitized  the reader  to the feelings,  emotions,  hopes, and  desires  of those  11 labelled retarded. The  reader became aware of a person  behind  the label. The  mildly mentally retarded person became someone that could be identified with and understood  by  mechanisms  the  and  reader.  the  Edgerton  created  inner feelings of the  an  awareness  of  hitherto unbiographed  mentally retarded. Edgerton's research methodology was  the  coping  lives of the  participant observation in  the daily lives of the mentally retarded people he studied; Since this research was dedicated to learning about the problems of mental retardates in the community by observing and participating in the lives of such persons and by permitting them to present their own lives in their own words, the interview schedule, though focused upon certain information areas, was very loosely structured (Edgerton, 1967, p. 21).  Edgerton's  approach introduced the anthropological tradition to the field of  mental retardation. His study, insofar as it was mildly  mentally  experience  retarded  in their own  mental retardation and  through  their  own  words. Edgerton's presented  new  possible, attempted to see the eyes  and  work was  insights into  a and  to  document  their  first in the field of about people  labelled  mildly mentally retarded. The utilization of participant observation proved to be a useful methodology and  contributed to the understanding  of the mildly mentally  retarded. The Braginsky's (1971) work studied the capabilities of the mildly mentally retarded  to  exhibit  psychological  impression  management  and  ingratiation  strategies. They used an experimental design to explore and provide evidence for the  similarity  of psychological strategies between those labelled  mildly mentally  retarded and their extramural peers. The  Braginsky's work develops a concept of  mild  population.' Society  mental  children  retardation as  through  labelling  a  'surplus  them  retarded  and  controls unwanted  institutionalizing  them.  The  12 Braginskys' call this method of controlling unwanted children "social sanitiation." The  poignancy  of  the  Braginskys'  interviews  with  mildly  mentally  retarded  adolscents moves the reader to question the concept of mild mental retardation. The  reader becomes attuned to the reality of the inner feelings and thoughts of  the mildly mentally retarded. Mercer (1973) through analysis of the population labelled mentally retarded in a typical American city throws further doubt on the validity of the concept of mild mental retardation as her results show a disporpotionate number of minority groups represented in the mildly mentally one  would  retardation  expect becomes  from  the  prevalence  questionable  as  retarded school aged population than rates. The  Mercer  meaning  analyses  the  of mild  labelled  mental  people  and  discovers that white middle class children are not labelled to the same extent as the poor, the black, and the Mexicans. Bogdan and  Taylor (1981) use interviews with two  mentally handicapped to gain an the labelled people. The  understanding  lives of the two  people labelled mildly  of mild mental retardation from  people that are interviewed are full of  emotion and meaning. It is not a drab world for the two rich in feelings and  symbolic  understanding  of these two  understanding  how  world. Bogdan  meanings. The  peoples' lives and  these two  reader develops an is richer and  people cope, adjust, and  and  Taylor use  research the world  of the two  participant  subjects but a world  observation  participants. The  awareness and  more informed  from  attach meaning to their as  the  methodology to  interviewers developed  rapport  with the participants to obtain information from an "insiders" perspective on their lives, and  the effects of being labelled mildly mentally  effects of stigma and how  retarded. The  profound  the identities of the participants are spoiled from the  13 effects  of being  participant's  labelled retarded  point  of view  is developed  is presented  by  Bogdan  in his own  and Taylor. The  words  and from his  perspective. Prior to these studies experimental quantitative research had dominated the field  of mental  retardation.  Social  scientists had not employed  ethnographic  methodologies for the study of mental retardation. Anthropological  and sociological methodologies have provided  new insights  into the care, treatment, and labelling of the mildly mentally retarded. These insights provided  new knowledge on the topic of mental retardation and provided  a look at the social world of the mentally retarded. The effects of labelling, the inner feelings of the mildly retarded, and the diagnosis and induction of marginal societal  members  into  the ranks  of the mentally  retarded.  Overall  these  methodologies presented evidence that: The "retardates," not unlike their extramural peers, display power strategies, adaptive styles, and ability to take into account the roles of others in their own behavioral choices. In short, they are not psychologically different from other specimens of humanity (Braginsky & Braginsky, 1971, p. iv). The  mildly  anthropological research  retarded  research.  The  methodology. Many  have  the benefit  have  yet to benefit  PMR reasons  profound mental retardation. Taylor communicating with the PMR  received  are given  from  sociological and  from  for the lack  this  form of  of research  into  and Bogdan (1981) state that difficult}' in  is one reason. The varied etiological composition of  the PMR  is another reason that is cited (Snell, 1982). Another stated reason is  the PMR  have unusual habits, that of pica and coprophagy. These habits serve  as an effective barrier to research researchers  (Cleland. 1979).  due to the abhorence of these practices by  14 F. THE  PURPOSE OF This  developing  study analytic  THE  STUDY  is designed abstractions  to  provide  descriptions  for understanding  the  for  the  behaviors  purpose  of  adults living in a group home. The study does not detail a comparison  five  of PMR  of their  behaviors in the group home to their behaviors in an institution. The purpose of the  study  is to observe  their  new  life  using field research techniques. The  concern is to develop theory, based on the data collected during the study, for the benefit of the  PMR.  Presently there is a dearth of information concerning the subjective state, inner feelings, and activities of deinstitutionalized PMR.  The research design is to  observe the participants in their daily activities to develop an awareness of their everyday conduct and what they actually do in the course of living their lives. The participants' emotional responses will be observed as method of understanding their  subjective  world.  To  my  knowledge,  the  literature  contains  no  such  systematic description. If decisions are to be made concerning the quality of life, living  conditions, and  treatment  of the PMR,  then  something  of their wants,  needs, and desires must be expressed on their behalf. The entire field of mental retardation, and especially at the level of the PMR, has been handicapped by our failure to recognize retardates as humans, not dieties, and possessed of both good and bad qualities. They are not "Angels Unaware" but people. Our emotional blinders have slowed knowledge production (Cleland, 1979, p. 22). The  observations  will  be  utilized  understanding of the role and world of PMR for  to  develop  a  phenomeriological  persons. The need to develop theory  understanding the actions and behaviors of the PMR  in group homes is much  needed to contribute to the body of knowledge on profound retardation (Cleland, 1979;  Craig &  McCarver,  1984;  Edgerton, 1983;  McAndrew &  Edgerton,  1964;  15 Taylor & Bogdan, 1981).  G. MAJOR CONCEPTS AND DEFINITION OF TERMS This  study  examines  a group  of profoundly  retarded  deinstitutionalized  adults in a community setting. The central concepts and terms used in the study are; 1.  Mental Retardation  2.  Sensory Deprivation  3.  Institutionalization/Deinstitutionalization  4.  Stereotyped Behaviour  5.  Emotions  6.  Inside/Outside  7.  Adaptive Behaviour /Maladaptive behaviour  8.  Symbolic Interactionism  9.  The Paradox of Deprivation The above concepts, one of which is an analytic abstraction were emergent  throughout  the research process. Some were developed  others during analyzed.  the data  The  concepts  deinstitutionalization,  collection of  adaptive  prior to data collection,  and yet, others while mental  behavior,  retardation, stereotyped  the data  was being  institutionalization behavior,  and  and  symbolic  interactionism were familiar to the researcher before the data collection started. During the data collection phase the concepts of emotions and deprivation, inside/outside  emerged  as the data  collection  progressed.  Finally,  and  during the  analysis of the data the paradox of deprivation and the search for evidence in the 'normal' population of the effects of deprivation emerged as a central concern  16 to the researcher. The  profoundly  mentally  primates (Berkson, 1967;  retarded  Hollis, 1978;  are  Lewis &  often  compared  Baumeister,  to  1982  non-human  McAndrew  &  Edgerton, 1964). In at least certain respects, then, they are less human than some infra-human species. In short, the relationship between language, social interaction, and rule-oriented behavior is available here in vivo in a manner different from that found either among normal humans or normal non-humans (McAndrew & Edgerton, 1964, p. 328).  The  researcher, in the course of the study and during the data analysis,  became interested in comparing the development of stereotypic behavior in normal humans  rather  than  recognizing the PMR  the  non-human  as humans, has  primate importance,  studies.  The  importance  of  in terms of theoretical  and  practice issues. • The  emergence of the major concepts during all phases of the research  process is not uncommon in field research, where theory arises from  the data.  During the data analysis, while developing analytic categories for coding the data, an emergent concept developed for the explication of stereotyped behavior in the PMR. normal  The  emergence of this concept  humans  on  their  adaptation  environments and the behavior of the  required linking theory to  montonous,  and  depriving,  research in and  boring  PMR.  In the following section the above terms are operationally defined as they are used in the context of this study.  1. Mental Retardation Mental  retardation  refers  to significantly  subaverage  general intellectual  functioning, resulting in, or associated with, deficits or impairments behaviour, with onset before the age of 18 years (D.S.M. Ill, There  are four classifications or subtypes  degree of intellectual impairment  of mental  retardation  in adaptive  1980, p. 36). reflecting the  the individual displays. The subtypes are based  on standardized intelligence test scores as shown in Table 3 (D.S.M. Ill, 1980, p. 39).  Table 3: Subtypes of Mental Retardation by IQ Level Subtypes of Mental Retardation  IQ Level  Mild  50-70  Moderate  35-49  Severe  20-34  Profound  Below 20  The  vast  approximately severe range  majority  of the mentally  80%. The moderate range about  7% and the profound  retarded  accounts range  are in the mild  for approximately  around  range,  12%, the  1% (D.S.M. Ill, 1983;  Fink & Cegelka, 1982). This study is concerned with the profoundly retarded and does distinguish between the two categories of severe and profound retardation. This distinction is important  as the severely retarded do develop some verbal communication skills  18 and  manifest  higher  adaptive  behavior  (Cleland,  1979; Snell,  1982; Westling,  1986). All of the participants in the study were untestable, did not have even a single word for their vocabulary and thus were incapable  of responding to test  questions. Furthermore, all of the participants in the study were in need of total care and did not manifest any semi-independent living skills. In contrast to the profoundly retarded, the severely retarded by adolescence will manifest some useful speech in most instances. Most severely retarded will attain adult mental ages of around years 3.5 4 whereas profoundly retarded mental age attainment will cluster at about 2-2.5 years. (Cleland, 1979, p. 3)  Other differences noted between the severe and profound levels include, the increased  incidence  of motor, sensory, physical  death for the PMR  handicaps, and earlier  age of  (Westling, 1986)  2. Sensory Deprivation Sensory deprivation (SD) or as Suedfeld environmental stimulation,  stimulation the  (RES)  patterning,  refers  and  to  expose  of stimulation, of meaningful  family,  especially  the mother,  retarded  are deprived  and  experiences  the  environment. RES refers to many experiences, levels  (1980) prefers to call restricted  individual  which to  reduce a  the  monotonous  which include reduction of absolute  patterned  sensory  monotony.  The  input, of separation of severely  and  profoundly  by their institutionalization from their parents, from early  childhood stimulation, and instead are exposed to a routinized, depersonalized, and physically deprivation.  restricted The  environment.  concept  Possibly  of deprivation  boredom  is one  is a  close  correlate to  of understimulation  for the  individual. Most authors and researchers  in SD  agree that profound changes occur  19 during  SD  or RES. There  is a  consensus  that  the individual experiences  hallucinations, or retinal visual phenomena, disturbances and  childish  emotional responses  (Heron, 1957; Schultz,  of cognitive  processing,  1965; Suedfeld, 1980;  Zubek, 1969). There is accord that these effects are determined by the reticular formation  in the brain  stem. The reticular  area  if it is not aroused by  environmental stimuli develops patterns on its own when understimulated. SD or RES  is believed to have profound effects on children, even when exposed to SD.  The  results of studies while inconclusive is suggestive  that the deleterious effects  are life long for these children (Friedman et al., 1968; Fiske & Maddi, 1961).  3. Institutionalization/Deinstitutionalization Institutions have been characterized by Goffman (1961) as places where a "person's self is mortified" (p. 14). Goffman defines an institution as a setting where there is: (a) a barrier between the person and the world, (b) admission and processing procedures that deny self, (c) social distance between the innmates and the staff, (d) denial of information about yourself, (e) rigidity of routine, (f) block treatment of people, and (g) depersonalization Institutions for the retarded have been documented as fulfilling the above criteria (Blatt, 1970; Blatt and Kaplan, 1966; Biklen, 1971). Deinstitutionalization refers to the removal of a person from an institution to a communitj' home. However, it is a moot point whether a community home  20 is or is not an institution; As is described in these chapters, the circumstances on community placement for many retarded persons are institutional in nature. One prominant fact of this situation is that these retarded individuals have no more control of most facts of their existence than they did in the state hospital (Bercovici, 1983, p. 189).  4. S t e r e o t y p e d  Behaviour  Stereotyped behaviour refers to: highly consistent and repetitious motor or posturing responses which are excessive with respect to rate, frequency, and/or amplitude and which do not appear to possess ' any adaptive significance (Baumeister, 1978, p. 354). Stereotyped behavior is a common phenomena in institutionalized PMR; Anyone who has worked with severely and profoundly retarded individuals, particularly in institutional settings, cannot but be impressed by the frequency with which these individuals exhibit highly repetitive and rhythmical behaviors .that are often very bizarre in character and which seem, on the surface, to be devoid of any adaptive significance (Baumeister, 1978, p. 353). Common stereotypic behaviour includes finger staring, hand waving, head banging,  and circle  walking  (Baumeister,  These behaviours are not understood individuals  maintain  these  1978; Cleland,  1979; Hollis,  1978).  with respect to why they occur or why  behaviours  in their  repetoires  (Baumeister, 1978;  Berkson, 1967; Lewis & Baumeister, 1982; Hollis, 1978). Stereotypic  behaviour  is often  referred  to as "self-stimulatory behavior"  (Arkell, 1982). Baumeister (1978) discourages the use of this term as it implies that the function and adaptive significance of stereotypic behaviour is in fact for self-stimulation and this relationship has not been clearly established. One  study  which  used  a field  research methodology  to study  sixteen  21 retarded  children in their residential and  school settings recorded observations to  support the self-stimulatory hypothesis for stereotypic behaviour. Self-stimulation was observed frequently among the residents in the current study. It was often a response to boredom or frustration. It was a way of providing activity for oneself. In addition self-stimulation was also observed to serve two other functions. One, self-stimulatory behavior served as an attention gaining device. Two, it was also used as a mechanism for gaining privacy - a way of retreat (Arkell, 1982, p. 229).  Stereotypic  behaviour  adaptive significance. A  is not  clearly  understood  as  to  its function  or  review of the literature in Chapter II will include the  theories related to stereotypic behaviour.  5. Emotions Emotions environment  are  with  defined an  in this study  accompanying  as  a  person's  physiological  response.  appraisals are a prerequisite to an emotional response 1968;  Schachter, 1970). Emotional  reactions  evaluation Thus,  (Arnold,  are determined  by  of the cognitive  I960; Lazarus, an individual's  interpretation of a situation or event. Emotions, therefore constitute a communication between people. One  person  can understand the inner state of another person if that person is emoting. In a situation where people do not have a symbolic language response of the other person can become a primary that person's reaction to the specific incident.  system  system  the emotional  for understanding  22  6. Inside/Outside Inside refers to the state of mind, thoughts and mental  activities of a  person. Inner being includes the day dreams, visual scenes, thought patterns, and inner  mental  environment  life  of the person.  Inside  is how  the person  appraises the  and the emotional responses that are elicited. The inner life of a  person is the essence of who they are to themselves (Solomon, 1976). When we are  alone and without stimulation it is our thoughts, the patterns we see inside  our minds, the voice we speak to ourselves with, and the voice which answers. Outside is other people, it is interaction with the environment. Outer life is  the sensory flow of stimuli that is other people. Our interaction with the  environment  constitutes our outer self. It is who we  are socially. Outside is  external and the antithesis of inside. The  concept of antithesis is entered into the discussion in relation to the  ascribing of meaning to the world. When a person is inside he or she can day dream and not necessarily react to the outside. The outside events and people dimish and become faraway  as we day dream or fantasize in our minds. Often  we are rudely awakened to the "reality" of the outside world from a reverie to discover that we have missed a significant cue and are out of touch with the outside. Such an example is the familar scene of a student engaged in a day dream and is suddenly brought back to the reality of the classroom discussion when he discovers that the teacher or professor has asked him a question and is waiting for an answer and the student is unaware of the question let alone the answer. The  degree  to which  a  person  develops  internal  fantasies, patterns,  reveries, and inner life is significant. The notion of a dreamer out of touch with  23 "reality" or a person whose "feet are not on the ground" are not uncommon statements  to hear  in our  society. The  interpretation  of these statements is  usually that the person is living in a world of their own  creation and does not  correspond to the external world. In the middle or the synthesis between inside and outside is the cultural learning of the individual. The midway point between inside and outside is how we  interpret the environment, interact with it, and define and are defined by the  environment and people in our social network.  7. Adaptive/Maladaptive Behavior Adaptive behaviour is the effectiveness or degree with which an individual meets the standards of personal independence and social responsibility expected of their  age  and  cultural  group  (Grossman,  1977).  Adaptive  behaviour  is the  measure of the degree to which an individual experiences success in adapting to the demands of his/her environment.  The  norms of the individual's  immediate  social group as well as those of the larger environment must therefore be taken into account when evaluating adaptive behaviour (Stack, 1984). Maladaptive significant  behaviour  difficulties  is the  in meeting  the  degree the  concept of maladaptive behaviour is key 1982;  Stack  to  which  demands  a  of the  person  experiences  environment.  The  in this study (Grossman, 1977; Snell,  1984). Whether a behaviour is adaptive or maladaptive  assessed in the context of the person's environment,  history, and  must be  social group  (Seltzer, Sherwood, Seltzer, Sherwood, 1981). Adaptive behaviour cannot be based solely on the imposition of one culture's ethnocentric interpretation of adapation as necessarily correct.  24  8. Symbolic Interactionism The  symbolic interactionist perspective is central to this study. The concept that  the individual is not driven solely by inner needs but is also defined by other people is paramount to the understanding of human behavior. The notion that there  is a "self  that  is distinct  from  an ego and is a result  of social  interaction by other people was developed by Mead (1934) and Blumer (1969). The construct of the "self from this perspective is unique for: The self is not seen as lying inside the individual like the ego or an organized body of needs, motives, and internalized norms or values. The self is the definition people create (through interacting with others) of who they are. In constructing or defining self, people attempt to see themselves as others see them by interpreting gestures and actions directed towards them and by placing themselves in the role of the other person. In short, we come to see ourselves in part as others see us. The self is thus also a social construction, the results of the persons perceiving themselves and then developing a definition through the process of interaction (Bogdan & Biklen, 1982). This  development  of the socially  constructed  self  allows  for a  perspective on the individual and society that the psychological construct of the ego does not permit. The construct of the "self  along with another  important symbolic interactionistic construct, the "generalized other," provides a theoretical framework for increased understanding of the individual, social behaviour and society. The "generalized other" construct was also proposed by Mead (1934). The  developmental sequence of the "generalized other" starts at birth with  the gradual awareness of the infant of "I-ness." That is the infant's ability to distinguish himself in terms of his own body, actions, and thought as distinct from the world and to be able to identify which is which (Schwartz & Jacobs, 1979). The next development that occurs is the child's awareness  25 and  experience of other people as "you's." This is the child's recognition  that other people have thoughts, feelings, motives, and  emotions. At this  stage it becomes possible for the child to mentally picture and imaginatively experience "you's" as having an inner life like their own  without actually  being able to hear their thoughts or experience their feelings and moods which is inferred from their outward observable behaviors. The  final  stage  is the development of "me-ness." People  look at  themselves introspectively, their actions, appearance, and inner dialogue. How do  people look at themselves?  Mead's theory was  that it was  from the  perspective of the "generalized other" or as the person believes other people see  him.  That  viewpoint. The  is, in essence, to see  ourselves from  another  person's  perspective of symbolic interactionism allows a distinctively  sociological conception of the self. The person develops a subjective interpretation of the outward actions of others and ascribes inner feelings, thoughts and motives to these actions. The  person  then  anticipates the responses of other people to their  own  actions and can modify their actions before they are performed on the basis of  their  anticipation  of  other  people's  responses.  People  thus  become  "self-conscious" of the reactions of others whether real or imagined. Thus the generalized other is internalized. "With the general ability to see oneself and one's acts from the standpoint of another human observer, it becomes possible to construct more specific generalized others" (Schwartz  &  Jacobs,  1979, p. 23). The social  symbolic interactionist perspective has  action  for the  individual  self  and  social  profound actions  implications for are  united  and  26 mutually  influenced. Objective  reality  become important. Blumer saw  is obscured  and  subjective meanings  meaning not as objective fact;  It does not regard meaning as emanating from the instrinsic makeup of the thing, nor does it see meaning as arising through the psychological elements between people. The meaning of a thing for a person grows out of the ways in which other persons act toward the person with regard to the thing. Their actions operate to define the thing for the person; thus, symbolic interactionism sees meanings as social products formed through activities of people interacting (Blumer,' 1969, p. 4-5).  This  way  of conceptualizing  the  self,  the  generalized  other,  and  subjective meaning through the interactive process led to the development of research  into the  self-fulfilling  "labelling" people (Bogdan &  prophecy  the  study  of the  Biklen, 1982). This perspective  implication for the study of the PMR  9. The  and  effect of  has  profound  participants in this study.  Paradox of Deprivation A  central concept of this research  paradox is that the world. The  paradox  individual's reaction to deprivation  individual in coping  when confronted  is the  with "nothing"  complete, involving, and  no  with from  longer  of deprivation.  is to create  nothingness finds everything. the outside creates  an  an  The  The inner  person  inner life that is  seeks or needs interaction with the  outside  (Burney, 1961). This paradox of deprivation has been explored 1961;  Burney, 1961;  Heron, 1957). The  by  various authors (Berne,  concept that a depriving, monotonous,  boring condition leading to profound changes in the individuals is not new. changes include hallucinations, emotionality, and unusual behaviour. Prolonged exposure to a monotonous environment, then, has definitely deleterious effects. The individual's thinking is impaired: he shows  The  27 childish emotional responses; his visual perception becomes disturbed; he suffers from hallucinations; his brain-wave pattern changes, (Heron, 1957, p 56). Paradoxically,  continued  exposure  to  a  monotonous  environment results in the individual developing compensation, triumphs  is preferable to  an  interuptions from  over the outside life. The  and  inner life  the  nonstimulating that becomes a  outside. The  inside  life  individual does not go through, as Goffman  (1961) claims, a mortification of the self but actually becomes a complete social unit unto him/herself not deinstitutionalization  of  wanting  long  term  the  institionalized  environments should serve to create new barrier  of self-isolation,  however  'outside.' The  the  paradox  PMR  adults  is that in the the  change  of  needs and should help to dismantle the autonomy  of the  individual  appears to  maintain itself through the change and to manifest itself in stereotyped behavior. As  previously mentioned the neurophysiological theory is that the reticular  area of the brain manufactures patterns in response The  individual in essence  creates his own  to lack of sensory input.  stimulation. This stimulation is not  observable by anyone else (Robertson, 1961).  H. SUMMARY These terms and major concepts are used in the study which explores the subjective states and daily lives of a group of five profoundly retarded nonverbal deinistitutionalized adults in a group home. The literature  review,  the  research  methodology,  implications for a theoretical understanding  following chapters will present; a the  data  collection,  the  results,  of the profoundly retarded, limitations  of the study, and areas of further research. The following chapter will review the literature on the profoundly mentally  28 retarded, emotions.  stereotypic  movement,  institutionalization,  sensory  deprivation,  and  CHAPTER II. REVIEW OF THE This chapter will present a review retardation. profoundly  The  review  will  LITERATURE  of the literature on profound  mental  following areas;  of the  include the  (a) studies  retarded, (b) stereotypic movement, (c) institutionalization, (d) sensory  deprivation and (e) emotions. A review of each of these areas follows.  A. THE  PROFOUNDLY RETARDED  Field research and the  knowledge  literature  or  ethnographic  understanding  contains  no  studies have not been utilized to advance  of the  ethnographic  PMR  studies  (Taylor & on  MacAndrew and Edgerton's (1964) ethnographic the PMR  the  Bogdan, 1982).  deinstitutionalized  The PMR.  study of an institutional ward for  concludes;  In summary, the whole area of mental retardation is, for the social scientist, a research backwater; and profound mental retardation is totally ignored (MacAndrew & Edgerton, 1964; p. 319). The  PMR,  still  have  not  eighteen years later (Taylor & why  been  the  topic  of research  for ethnography  Bogdan, 1982). There are a number of reasons  they have not been the subjects for social science research. Field research  or ethnography usually includes interviews with the subjects or participants in the study. The  PMR  do  not  develop  bizarre behavior of the PMR  oral  is another  language. The  unusual,  research barrier. The  minority of the population. Finally, the PMR  have largely  aggressive,  PMR  and  are a small  been institutionalized  and not been part of community life. The population applied  majority  of the  studies of the  (Cleland, 1979). The  behavior  research  analysis . research  (Snell, 29  PMR  that  has  are  on  been  the  institutionalized  performed  1982). Unfortunatel}',  has  many  been  of the  30 studies use  severely and  profoundly  distinguish between the two  retarded as  their population and  do  not  groups. Cleland (1979) discusses the difficulties of  this methodological error as it confuses the results of the severely retarded with the profoundly retarded. Prior to the 1970s the emphasis was the PMR.  The  PMR  were labeled 'crib cases, low grades, vegetables, idiots, and  untrainable' (Bogdan &  Biklen, 1977;  Edgerton,  PMR  1964).  chromosomal,  or  on the classification and diagnosis of  The  sensory  are  Campbell &  more  abnormalities  likely than  Bricker, 1984; to  the  exhibit less  MacAndrew  motoric,  retarded  &  structural,  (Berkson  &  Landesman-Dwyer, 1974; Cleland, 1979; Snell, 1982). The and  presence  antisocial  of a high degree of maladaptive  behavior  in  the  profoundly  retarded  stereotypic, self injurious, have  described by many researchers (Baumeister, 1978, Baumeister Baumeister  &  Rollings, 1976; Berkson  &  been &  Landesman-Dwyer, 1974;  reported  Foreman,  and 1973;  Cleland, 1979;  Hollis, 1978; Foreman & Baumeister, 1973). Stereotypic movement is so prevalent in the PMR  that it is used  as a measure of the degree of retardation (Snell,  1982). The PMR  are the most commonly institutionalized group of those classified  as retarded (Eyman & Miller, 1978). The highest degree of stereotypic movement and self-injurious acts is found among the institutionalized  PMR;  Anyone who has worked with severely and profoundly retarded individuals, particularly in institutional settings, cannot but be impressed by the frequency with which these individuals exhibit highly repetitive and rhythnical behaviors that are often very bizarre in character and which seem on the surface, to be deviod of any adaptive significance (Baumeister, 1978, p. 353). There was  a shift in the 1970s in the scientific literature to a focus on  31 behavioral  research  profoundly  retarded  1980). Berkson  &  and  an  experimental  (Berkson  &  orientation  Landesman-Dwyer,  Landesman-Dwyer  with  1977  the severely  Edgerton  (1977) use a methodology  through  operant  conditioning  and  behavior  Langess,  called  behavior analysis and demostrate that the severely and profoundly learn  &  and  applied  retarded can  'shaping' in laboratory  and  restricted settings. The retarded  results of applied behavior analysis on the severely  were favourable  to the extent  and  profoundly  that results demonstrated the PMR  do  acquire new skills. The problems of the behavior modification approach include: individual variablity in acquisition rates, finding suitable reinforcers, programming of task sequences, failure to generalize beyond the training situation, lack of follow-up after training, and the dilemma involved in using aversive techniques (Berkson & Landesman-Dwyer, 1977, p. 432). The as  valid  behavior  above problems with applied behavior analysis have continued in 1987 as they analysis  ultimately  methodology  be detrimental  These difficulties should over the past  were in 1974. A is it's total  to the PMR not cloud  further problem  disregard  (Berkson  &  of the applied  of theory  which  Landesman-Dwyer,  the important contributions of this  30 years which has demonstrated that the PMR  to be  could 1977).  research  do learn and  change and are not just 'vegetables.' Ethological research and  profoundly  has been utilized as a methodology for the severely  retarded. The ethological approach emphasizes direct observation of  discrete units of behavior in restricted settings (Sackett, 1978). Ethological studies have  been  ethology  few in number  (Sackett,  1978, Vol. 1 &  2). The  limitations of  are the arbitrary nature of dividing continuous human behavior into  discrete units, the difficulty in measurement of movements, and ecological validity  32 (Langess &  Edgerton, 1978).  The PMR  have been omitted as research subjects for many reasons, which  are stated below; (1) difficulty in measuring IQ and therefore in matching, describing, and grouping the subjects; (2) a prevalence of behavior problems; (3) an absence of language; (4) heterogeneity of etiology; and (5) the frequency of physical and emotional handicaps (Snell, 1982, p. 296). Cleland (1979) states that the repugnant  social habits of the PMR  also  contributes to their exclusion as research subjects; Abhorence of coprophagy in humans has served as an effective barrier to research (Cleland, 1979, p. 52). The literature on the PMR  does not describe the behavior, social patterns,  or daily activities in community settings in a holistic manner. The  research is  limited to applied behavior analysis, ethology, and institutional settings. The need for studies of the PMR  in natural settings is a goal;  It is the consensus of the literature, if we are to improve our understanding of mentally retarded persons, we must study their lives holistically, where they occur, rather than in laboratories, we must listen to these people as they express their own views of their lives (Edgerton, 1984, p. 2). The  above sentiment is expressed by  Landesman-Dwyer, 1982;  Edgerton,  1982,  &  many researchers (Bercovici, 1984;  1983;  Bogdan, 1983). A research  methodology that will answer the need for ecological validity, absence of verbal language, and abherant behavior, is expensive and time consuming. Ethnography, field work; or participant-observation is a research methodology that meets these requirements.  There  are  no  ethnographic  studies currently  of  the  PMR  in  difficult task of a research study to describe the daily living  and  community homes. The  33 subjective state of the PMR 1984;  Bogdan  Gollay,  1981;  &  Taylor,  Okolo &  has 1981;  and  1981,  Edgerton,  1980;  1984,  Edgerton  Guskin, 1984). There is no  subjective states of the PMR (Snell, 1982)  been stated in the literature (Bercovici,  (Taylor &  &  Langess,  literature available on  the  Bogdan, 1981), their emotional responses  their lives;  Because of the rarity of the profoundly mentally retarded little is known about them outside of the institutions, (Cleland, 1979, p. 5). The  literature  demonstrated  the  on  PMR  the do  PMR  learn 'new  behavior, self-injurious acts, and increased research authors  who  called  through  behaviors.  applied The  antisocial behavior has  with the PMR.  have  has  for  behavior  reports  of  analysis stereotypic  resulted in requests for  There is present in the literature a group of qualitative studies  on  the  PMR.  There  consensus in the literature that the development of theory for the PMR and  in need of attention. The  attention, and  PMR  is a  is weak  have not received a great deal of research  the literature contains a significant amount of articles and  reports  that request more research to correct this omission. It has 1979). The  been questioned whether the  emotions of the PMR,  PMR  even have emotions (Cleland,  or their subjective states, has been raised as  an important research concern; Just because people's subjective states may not be directly accessible to us - as in the case of nonverbal retarded persons' - this does not mean that they do not have subjective states. If we have not understood the severely disabled person, it is because we have not attempted to do so (Taylor & Bogdan, 1981, p. 78). The  literature,  overall,  calls  for  increased  research,  descriptive works, and the development of theory concerning the  holistic PMR.  studies,  34 B. STEREOTYPIC BEHAVIOR Despite the stereotyped behavior present in the severely and  profoundly  retarded very little is known about this phenomenon (Baumeister, 1978; Foreman &  Baumeister,  1976,  Hollis,  1978  Foreman (1973) and Baumeister the  major  theoretical  &  Lewis &  Baumeister,  1982). Baumeister  &  Rollings (1976) have done inclusive reviews of  perspectives  concerning  stereotyped  perspective seems to have some empirical evidence  movements.  in it's support  Each  (Baumeister,  1978). The  theoretical perspectives on stereotyped movement can be divided into  school,  those  which  organic  and  central  place  an  nervous  emphasis system  on:  1) environmental  impairment,  deprivation, 2)  3) developmental  aspects of  maturation, and 4) learning.  1. The  Deprivation Theory The  deprivation theory of stereotypic behavior, relates the development of  stereotyped movement to deprivation in the development period (Baumeister, Berkson,  1973). The  the mother-infant sundering experimental  the  psychoanalytic belief is that it is due  interaction  (Baumeister  mother-infant  relationship  support in primates who  monkies separated  from  &  to a dispruption in  Foreman, 1976). The causes  stereotypic  are removed from  1978;  concept that behavior  has  their mothers. Rhesus  their mothers exhibited stereotyped movement whereas  the control subjects left with their mothers did not exhibit this behavior (Berkson, 1973; Harlow & Harlow 1962). The deprivation theory of stereotyped movement does not just focus on the mother-infant relationship but includes the amount of sensorj' stimulus present in  35 an  environment. Experiments with adults in sensory-deprived  resulted in unusual experiences (Heron, 1957,  environments have  Suedfeld, 1980;  Zubek, 1969). The  results of sensory deprivation experiments lead Berne (1961) to state that adequately  stimulating  environment  is paramount  in the  development  of  an the  person. The ability of the human psyche to maintain coherent ego states seems to depend upon a changing flow of sensory stimulus. (Berne, 1961, p. 77). Deprivation  theory  does not  solely use  the  mentally  retarded  as  their  population to explain stereotypic behavior. Abuse, early hospitalization of children, confinement, and behaviors Suefeld, that  isolation  (Baumeister,  especialty in childhood  1978,  1980). Research on  deprivation  creates  emotional reactions, and Schultz, 1965; This  Friedman  retinal  visual  perceptual  known  al, 1968;  sensory deprivation on  Fiske  in a  &  elicit bizarre Maddi,  'normal' adults has  phenomena  difficulties  to  has  caused  many  mentally handicapped (Bogdan & institutionalized  shown  (hallucinations), childish short  time  (Heron,  authors  severely  in the  depriving  and  Taylor, 1982; and  profoundly  field  of mental  1957,  retardation to  unsuitable  environments for the  Nirje, 1976;  Wolfensberger, 1976).  retarded  person  exhibits  stereotyped behavior than non-institutionalized people (Baumeister, 1978; Taylor, 1982;  1961;  Suedfeld, 1980).  hypothesize that institutions are  The  et  are  Bogdan  Snell, 1982).  When institutional neglect and deprivation result in 'maladaptive behavior'- for example, rocking and head banging - it is attributed to the condition of the inmates. Do labels help? Are labels useful? For the persons to whom they are applied - the judged -no. (Bogdan & Taylor, 1982, p. 16). There are a number of descriptive features of stereotyped  more  movements  &  36 that warrant some attention. For one, these behaviors seem to be related to instutionalization (Berkson & Davenport, 1962; Kauffman, 1967; Maisto, Baumeister, & Maisto, 1978). The common assumption is that there are debilitating factors in the institutional environment that initiate and maintain stereotypy (Baumeister, 1978, p. 355). Among those residing in institutions, the incidence of abnormal stereotypies may be even greater. Berkson and Davenport (1962) and Kaufman and Levitt (1965) have observed about two-thirds of their samples engaged in some form of rhythmical movements, although a great deal of variability was evident with respect to the frequency, intensity, and topography of the behavior (Lewis & Baumeister, 1982, p. 124).  One behavior  difficulty is that the interpretation of deprivation causing stereotypic  rests on  the assumption  that institutional environments  are depriving  ones and not all authors agree with this assumption (Baumeister, 1978). There is evidence that indicates that environments that are depriving result in stereotypic movement. The conclusion that stereotyped pacing and other mannerisms are caused by restraint or confinement seems warranted by both animal and human data (Lewis & Baumeister, 1982, p. 138). Arkell (1982) refers to stereotypic behaviour as self-stimulatory behaviour throughout  her  study. The  profoundly  retarded  children  results add  of her a  new  research dimension  on to  sixteen the  severely  and  perception  and  interpretation of stereotypic behaviour. It seems clear that for some children self-stimulation represents a way to escape from or avoid interaction. These children seem to engage in self-stimulation for the purpose of creating an intrapersonal space around them (Arkell, 1982, p. 491). Arkell's view of stereotypic behaviour as self-stimulatory and self serving presents a different and unique perspective for these behaviours. Arkell includes not only avoidance but also attention seeking through stereotypic behaviour.  37 Several incidents in the field notes suggest that three children engaged in self-stimulatory behaviour for the purpose of gaining staff attention (Arkell, 1982, p. 236). Arkell summarizes her viewpoint on stereotypic behaviour: It is postulated that retarded individuals self-stimulate because they are bored, frustrated, upset, or even hungry. Although the present study did not focus on self-stimulatory per se, observations indicate the validity of these findings as reported in the literature. In addition, the present study indicated that self-stimulation may serve two additional functions among profoundly retarded institutionalized children (Arkell, 1982, p. 491).  The  hypothesis  individual  compensating  homeostatic  mechanism  that  an  by  understimulating  performing  within  the  environment  self-stimulating  individual  is  the  results  behaviors theoretical  in  through basis  the a  which  underlies this school of thought on stereotypic behavior. Baumeister questions this theory: At this point, as intuitively appealing as the theory seems, the self-stimulation interpretation seems too vague and general, lacking the precision necessary to differentiate critical variables that, on the one hand, initiate the behavior, and on the other maintain it. Indeed, a persuasive arguement may be made that stereotyped movements actually induce a state of stimulus deprivation. (Baumeister, 1978, p. 362).  2. The  Central Nervous System Damage Theory The  the  central nervous system damage and  degree of stereotyping  possibility  since  positively  correlated. What  severely and  sterotyping  with low  IQ.  behavior  and  is not  profoundly retarded who  taken  organic damage school correlates  This, Baumeister (1978) agrees, is a severe  and  profound  retardation  into account is people  who  are  are not  exhibit stereotyped movements.  There are descriptions of the blind, the autistic, and  prisoners in solitary  38 confinement that exhibit stereotyped  behavior  (Baumeister, 1978; Burney, 1961).  Further studies reveal that not all severely and profoundly retarded people exhibit stereotyped behavior (Lewis & Baumeister, 1982; Snell, 1982). It does not appear consistent that if central nervous system or organic damage is the causal factor that  such  a  heterogenous  group  under  different  circumstances  would exhibit  stereotyped movement. There is evidence the  brainstem,  from neurophysiological research that deprivation effects  particularly  the reticular  formation.  A  brief summary  of this  research and theory states; Here is a neurophysiological explanation for stimulus hunger, as well as for the vivid memories, explorations of the self, and other phenomena reported by REST subjects. The formulation is also centrally relevant to theories that relate REST effects to changes in central arousal or activation of the organism (Suedfeld, 1980, p. 385). The  development  of stereotypic movement  could  be a function of the  reticular area.  3. T h e D e v e l o p m e n t a l T h e o r y  The  developmental school is represented  that stereotyping is an exaggeration  by Berkenson (1973) who states  and extension of behaviors that are normal  at some point in the development of the higher primates including man. Longitudinal studies reveal that a variety rhythmic motor patterns characterize normal human development during the period of infancy. A reasonable conclusion is that some forms of rhythmical and repetitious behaviors, such as body rocking, are, in fact essential to normal development of motor, social, and learning skills. (Baumeister, 1978, p. 360).  v  39 4. L e a r n i n g  The  Theory  most recent contribution to theories on  stereotyping  are  those from  learning theory, which state that the social consequence of the behavior is it is inserted into the person's behavioral repetoire (Spradlin & This seems a spurious  argument, as often stereotyping  why  Girandeau, 1966).  occurs in situations on  institutional back wards where no social consequence or antecedent occur. Further, in cases of deprivation through isolation there is no  social consequence for the  actions that the individual exhibits (Burney, 1961).  5.  Summary  Stereotyped behavior is a major phenomena observable in a institutionalized profoundly understanding  and  of  majority  of  retarded persons. It is an area in need of theoretical ecological  analysis  and  research  (Baumeister,  Regardless of theoretical school, it appears that stereotypies are a  1978).  manifestation  of a response to deprivation, whether it is an under stimulating environment, a sensory  deficit  (blind, deaf), separation  of the  mother  and  child,  a  confined  environment, with or without a damaged central nervous system. The  effects of  metabolic disorder is a difficult area. One  effects of  study concludes that the  deprivation for a group of children with a metabolic disorder negatively affected their development. A who social  second group of children with the same metabolic disorder  had not experienced the deprivation were significantly higher in the areas of and  interpersonal behavior, language  and  comprehension, intelligence and  personality adjustment. It can be stated that PKU, with its biochemical substrate, is a most complex disorder. The evidence at this juncture suggests that the variations in outcome are in part related to the influence of early stress of physical immobilization, sensory restriction, and isolation  40 experiences (Friedman, et al.,  C.  1968, p. 302).  INSTITUTIONS  The focal point of this study is the care and treatment of the profoundly mentally retarded. The has  already  been  institutionalized One  stereotypic behavior of the profoundly retarded population  noted.  The  profoundly  of opinions  are  the  most frequently  issue is, whether institutional care, is in the best interest of  this group, or whether community number  retarded  on  this  living is a better alternative. There are a  matter  and,  at best, the  research  findings are  contradictory (Heller, 1984).  1. A r g u m e n t s F o r D e i n s t i t u t i o n a l z i a t i o n  Institutions have been criticized as depersonalizing, rigid, depriving, and self mortifying (Goffman, 1961). Biklen (1977) describes institutions for the mentally retarded as a form  of "colonization" of the  population known as mentally two  retarded. The  defined and concept  labeled class of the  of colonization refers to a  class system where the ruling class exploit the colonial class, and  them  control  (Biklen, 1977). In fact, many institutions did employ names like 'Colonj'  Farm' where inmates worked for substandard  wages, if any  and were segregated from society (Biklen 1977; Wolfensberger, Blatt &  Kaplan  were paid at all, 1972, 1975).  (1966) presented photographic essays which testify to the  atrocious conditions of institutions for the  mentally  retarded. The  photographic  essays depict the institutions as deprived inhuman environments that should be closed. Braginsky  and  Braginsky  (1971) provide evidence that institutions for the  41 retarded  are  'surplus  population  controls it's deviant and give  examples  misbehave, and  of  control' centres.  Their  thesis is that society  unwanted population through institutionalizing them. They  parents  orphans  who  being  do  not  want  labelled as  their  mentally  children,  retarded  and  children  who  subsequently  institutionalized. Bogdan and and  Taylor  (1981) regard  not preparing the mentally  institutions as stigmatizing, demeaning,  retarded for community life. They, in a similar  vein to Mercer (1973), view mild mental retardation as a social construction. First, we regard 'mental retardation' as a crude metaphor, and we reject completely its reification to the status as an 'illness of the mind.' We do not believe (nor has it been demonstrated) that retardation is a real physical or intrapsychic state located somewhere in the heads of those who have been labeled 'mentally retarded.' Retardation exists, from our perspective, only to the extent that certain persist in calling certain other people retarded (Braginsky & Braginsky, 1971, p. 30). These authors see the institutional population and  as mistreated, misdiagnosed,  scarred for life from the experience. It is often believed, that possibly the  midly retarded can benefit from deinstitutionalization, however the need still exists for the more severely retarded. This has been rebutted; Contrary to the usual stereotype that holds that severely disabled persons (i.e. those presently institutionaled) are proper candidates for institutions, the studies show that small-scale community facilities are especially important to severely handicapped persons, for with them there is a greater premium on individualization treatment attention and greater risk of the depersonalization characteristic of total institutions (Laski, 1980, p. 173). Institutions have been regarded as detrimental for the care and of the  mildly and  Braginsky, 1971;  moderately Mercer, 1973,  Institutions are now  retarded  (Bogdan &  Nirje, 1972;  being used more and  Taylor, • 1982;  Wolfensberger, 1972.  treatment  Braginsky 1975,  &  1980).  more as repositories for the severely  42 and been  profoundly  retarded  deinstitutionalized  population. The and  the  severe  mildly and and  moderately  profound  have  retarded  been  left  have  in the  institutions. It has been commonly observed that institutions are gradually becoming populated almost entirely with behavior problems, the multihandicapped, and the severely retarded, all of which are difficult to serve in the community (McCarver & Craig, 1984 p. 115). The  care  and  treatment in institutions  for the  severely and  handicapped has been documented as unfit for anybody (Bogdan & Conroy  &  Bradley,  1985). The  institution's back ward was  deprivation  detailed  sent there as punishment, and  by  and  inhumane  profoundly  Taylor,  conditions  on  a mildly handicapped person, who  1982, one was  gave an insider's account of what took place on  that ward: When I first arrived there and saw all the people I thought, 'Oh, no. What am I getting into now? What's going to happen?' There are all of these people just sitting around and rocking back and forth and back and forth. Some of them were pulling their hair and eating it. One was in a straitjacket. They had to keep her in it because she hurt other people. They were just sitting there looking at their hands and twirling them around. (Bogdan & Taylor, 1982, p. 133). The the  photographic  institutions  treatment  of  for the this  institutions  became central  Wolfensberger  retarded  for the mentally  on  to  Edgerton, 1967;  ask the  the reports on the condition of to the  (1972,  debate concerning  1975,  the  the grounds it is deviant, perverse,  and  retarded. Wolfensberger supports is supported  by  1980)  the  closure of the  many  for the development of community residential stigmatizing experience  Goffman, 1961,  1963;  the  opposes  for the retarded. This position  researchers who alternatives  retarded  population.  institutionalization of the devaluing  essays, the studies, and  of  institutionalization  authors  and  programs as (Blatt,  1970;  Nirje, 1972). This group's main arguments  43 are: 1.  institutions for the retarded are dehumanizing and depersonalizing,  2.  institutionalization has adverse effects on child development and behavior,  3.  large institutions are an obsolete concept in service provision and need to be replaced with small community based models of service delivery,  4.  an institution is not the least restrictive environment for the retarded  5.  all retarded  persons regardless of functioning level can make  progress if  given the appropriate intervention strategies and programs (Sontag, Certo, & Button, 1979; Snell, 1982).  2. P r o - I n s t i t u t i o n a l i z a t i o n  One group which  Arguments  is in favor of institutionalization was summarized by  Ellis (1979) as believing: 1.  institutions for some retarded persons are the least restrictive environment,  2.  there is liitle emprical support for the benefits of community placement for the severely and profoundly retarded,  3.  existing  research on community  retarded is a 'methodologist's  placement of the severely and profoundly  nightmare' and has extrapolated results beyond  what has been proven, 4.  behavior  modification programs with the profoundly  retarded have not been  proven through research in the literature to be effective, 5.  community  based programs that do not result  should be closed (Ellis, 1979).  in significant  improvement  44 3. N e u t r a l  Position  On Institutionalization  Finally, there is a institutionalization Zigler & 1.  a  issue.  third  Their  Balla (1976,1977) who majority  group, that  position  has  takes a  neutral  position  been  stated  by  Zigler  have  been  for  higher  on  the  (1971)  and  note that:  of  community  placements  institutions and  community  placements are  functioning  individuals, 2.  difficult to  study and  are  not  static predictable facilities but are diverse in their nature, 3.  age,  preinstitutional history, IQ,  severity of physical, mental, and  emotional  handicaps are difficult to operationalize especially across studies, 4.  studies  of  institutionalization  reveal  between institutional size, quality mental  age,  chronological  The  Results On  age,  length  conflicting  the  of  retarded  relationships person's  IQ,  institutionalization,  Zigler &• Balla, 1976,  and  1977).  Deinstitutionalization  debate over the institutionalization/deinstutitionalization of the mentally  retarded is ongoing in the  literature (Kleinberg &  Tsovoldt, 1983;  Zigler, 1971).  Snell, 1982;  Despite the lack of definitive research on and  and  of care, and  preinstitutional history (Zigler, 1971;  4. R e s e a r c h  complex  Galligan,  1983;  Tsovoldt  &  the effects of institutionalization  the benefits of deinstitutionalization, the institutions are  closing. The  reasons  appear to be more on moralistic, philosophical, humanitarian arguments than as a result of factual emperical evidence. The contradictory  results as  to  of  deinstitutionalization  the  benefits  to  the  research  individuals  are  mixed  (Edgerton,  1984;  and  often Heal  &  45 Fujiura; 1984; Kleinberg  &  Galligan, 1983). The belief that deinstitutionalization  would greatly improve the quality of life and functioning level of the retarded is a matter to be researched Baumeister, that  and not taken for granted (Bercovici, 1983; Brooke &  1977 Edgerton, 1984). Thus, while there  deinstutionalization would  behavior of the mentally  have  a  tremendous  was impact  an initial optimism on  the  adaptive  retarded, research at this point is bogged down (Heal &  Fujiura, 1984). It has been stated that even the variables studied may  not be  relevant; The emphasis on verification of hypothesis rather than the generation of theory, with the attendant constraints of operationalism, has led many researchers into ever more objective and precise exercises in the measurement of variables that are nowhere demonstrated to be the most relevant for prediction or understanding. (Edgerton, 1984, p. 3).  5.  Summary  In  summary,  the institutions  are characterized  as  unsuitable  due to  inhumane conditions, deprivation, and social stigma. Deinstutionalization will occur because  of  the  social  perception  of  the  institutional  environment  as  depersonalizing, restrictive, and stigmatizing. It has been summarized that: Abuse, drugging, isolation cells, straitjackets, unsanitary conditions, medical neglect, and an utter lack of programming characterize the worst of these institutions, but more subtle forms of neglect may be found at all of them (Bogdan & Taylor, 1982, p. XHI). The deprived  theory  that  underlies  the deinstitutional  movement  is; that the  environment and stigamitizing treatment the person receives results in  deleterious effects on that person. Blumer (1969) states that who we are, is a result of how we are treated and perceived by others. The  symbolic interactionistic perspective  states that the environment and  46 the  social  group  which  compose  our  social  world  ourselves. Thus, the institutional  experience of back  devaluation  person  person  could  labeled  placement  on  result mildly  i n the mentally  a w a r d i n an  believing  retarded  gave  determine wards,  he  we  perceive  depersonalization,  is less  this  how  than  account  of  and  human. the  One  effect  of  institution:  I almost didn't make i t . T h e n the big day came that I went from H to my first ward. I don't like the word 'vegetable' but i n my own case I could see that i f I had been placed on the low grade w a r d I might have slipped to that. I began feeling m y s e l f slipping. T h e y could have made me a vegetable. (Bogdan & T a y l o r , 1982, p. 43).  Much social  of the  environment  deinstitutional  movement  is i m p o r t a n t i n the  development  the  symbolic interactionistic  perspective. The  the  social structure  situation  person. The as  an  of the  Principle  application  states  The  theory  that  the  perception Deviancy  Gruneswald,  of  and  has  of  saj' the  adherents  objective fact. Deviancy  may  cultural them to  as  (Nirje,  normalization  of the  premise  person  treatment  as  of the  and  i n Scandanavia  that  the  stated i n  person  and  behaviors of the may  be  viewed  1972). 1972;  context of well  the  perspective to the m e n t a l l y retarded  1972; Nirje,  'normalization'  on  the actions  of N o r m a l i z a t i o n developed  social  society  social  determines  of the symbolic interaction  (Bank-Mikelson, 1972;  is based  as  a  Wolfensberger, person  how is one  they  1972,  is paramount perceive  1975) to  the  themselves.  of perception rather  be changed as social perception changes.  The first institutions i n the 1870's were not erected because the retarded were seen as a social menace, but i n order to give them a s y l u m from the public. In only twenty or thirty years after that, the approach reversed, and the retarded became reinterpreted as a menace, and society as needing protection from them. F i n a l l y there is the reversal of deviancy by restoration, rehabilitation, and reintegration, (Wolfensberger, 1980, p. 13).  than  47 Wolfensberger (1972) states that the mentally .deviant  as  segregated  long  as  nature,  they  are  institutionalized.  actually make those  abnormal cultural context. The retarded population should  be  retarded will be viewed as  The  institutions  institutionalized  deviant  will, by  their  because of the  theory of normalization states that the  mentally  exposed to culturally normal living situations not  abnormal institutional environments (Nirje, 1972). The the  person  effect of the social and underlies  deinstitutionalized.  the  Today,  severely in  spite  cultural environment on and of  profoundly the  fact  contradictory, the institutions are being closed. The  the development of  retarded that  population  research  profoundly  being  findings  are  retarded are being  sent to group homes in the community (Bruninks, 1981).  D. DEPRIVATION The  literature  on  the  effects of sensory  (SD)  been reviewed by  or restricted  environmental stimulus  technique  and Zubek (1969). The  studies and empirical evidence of the effects of SD  Suedfeld  (REST) has  deprivation  recommends more accurately naming this experimental  Suedfeld (1980) or as  procedure REST  on humans is universally recognized as deleterious if the exposure is prolonged: A changing sensory environment seems essential for human beings. Without it, the brain ceases to function in an adequate way, and abnormalities of behavior develop (Heron, 1957, p. 56). As will be demonstrated throughout the following chapters, an absence of variety, i.e., an environment offering little or no stimulus change, is an aversive state which most men seek to avoid. Too long an exposure to unchanging sensory input produces, as will be seen, physiological, cognitive, perceptual, and affective impairments (Schultz, 1965, p. 1). When a subject is put in an environment without patterned and unchanging stimulation, he may relax and fall into a state of lowered arousal and sleep, he may focus attention on his thoughts, or he may  48 keep scanning his introceptive and exteroceptive fields, for stimuli. Either an experimental set, or his own sensitizations to peripheral sensory changes, may initially lead to reports based on idioretinal phenomena, inner ear noise, or illusions. Eventually the subject may become sensitized to more organized- images whose site of origin lies higher in the nervous system (Zuckerman, 1969, p. 125). Actually, stimulus reduction is a powerful way to elicit changes in a variety of psychological and behavioral processes (Suedfeld, 1980 p. ix). Sensory  deprivation  is central to understanding stereotypic behavior and  the care and treatment of the mentally are  environments which deprive  retarded. It is believed that institutions  people of culturally  normative  experiences, of  dignity, and of normal emotional experiences (Blatt, 1970; Blatt & Kaplan, 1966; Bercovici, 1983; Bogdan & Taylor, 1981; Edgerton, 1967; Braginsky & Braginsky, 1971;  based  Biklen, 1977; Wolfensberger, 1975; Goffman, 1961). The  central tenet to all of the theories on stereotyped  on  deprivation:  environmental completeness  deprivation  of mother  stimulation, deprivation or central nervous  of social  system  child  movement are also  experiences,  deprivation of  rewards, deprivation  of organic  completeness. All of the theories in  someway show a lack or deprivation of something. Profoundly mentally  retarded  people experience early institutionalization and often have central nervous system damage so it is difficult to isolate the particular depriving condition which creates and maintains the stereotyped movement. Skeels and Dye (1939), in a classic study, report significant results on the effects  of early  orphanage  environmental  and placed  intervention. They  them on a ward  took  in a state  two children institution  from  an  for mentally  retarded women, who stimulate the infants. The two children exhibited significant increases in intellectual development. Skeels and Dye in a later study, confirmed their  earlier  finding, by transferring thirteen children  from  an  orphanage to  49 similar  wards  and  comparing  twelve children who children placed on points. The  them, in  terms  of  remained in the orphanage. A the institutional ward, had  children who  intellectual development, to year and  increased  an  a half later, the  average of 27.5  remained in the orphanage dropped an  average of  IQ 26.2  IQ points in the same time period. Skeels followed three years and  the  children  longitudinally, with  a  follow-up  study  after  twenty-five years. Skeels (1942) reported that the experimental  group children retained  their intellectual development in foster homes and  that  the children in the orphanage decreased in intellectual ability. In a follow-up study Skeels (1966) found that the thirteen children in the experimental group enlarged the differences between the two performance.  Indeed,  all thirteen  children  were  self-supporting,  average of twelve years of school completion (one had twelve children in the grade completion was adolescence. This  they  less than third grade, and of the  demonstrates striking differences due  few  one  had  an  a Ph.D.). In contrast, the  control group, half were in institutions and  study is one  Kirk (1958; 1965)  groups in intellectual  died in an  longitudinal studies  to differential stimulation  the median institution in  of children  and  in early childhood.  found similar trends in a series of studies on young mentally  retarded children. Friedman, Sibinga, sensory  restriction due  phenylketonuria retardation).  (PKU  They  Steisel, and to  a  separation  Sinnamon from  their  metabolic disturbance  identified  a  group  of  (1968) studied  which  PKU  compared  them to a group of PKU  of  effects of  children  with  results in severe/profound  children  identified hospitalization of their children before age days, and  families  the  whose  3 for an  children  who  parents  had  average of fifteen had  not  suffered  50 parental separation. The two groups of children, while approximately equivalent in severity of retardation initially, the authors concluded that the group of sensory restricted  children  displayed  a  greater  degree  of impairment  in intellectual  performance, communication skills, and interpersonal relations. The  results of this study while inconclusive are interesting and; The possibility that such problems as PKU make the child more vulnerable to adverse effects of stimulus restriction, or that stimulus restriction is an exacerbating or catalytic factor in the development of some psychological sequelae of physical syndromes, is certainly worth investigating (Suedfeld, 1980, p. 127). The  above  studies  support  the  hypothesis  environments are detrimental to the mentally  retarded  that  monotonous  and have significant  effects on the intellectual and social development of the person. Baumeister (1978) wonders  what  the effects  of a  monotonous  environment  would  produce on highly intelligent people as he considers causal factors for the profoundly  retarded;  One need only imagine what might happen if people of superior intelligence were placed for long periods in situations in which stimulation is grossly lacking in such quality and/or quantity that the normal cuing properties of the physical and social environment are severely disrupted (Baumeister, 1978, p. 354). The studied  of Heron, Hebb, Doane, Scott,  the effects of a rigidly  population students,  research  as Baumeister  and Bexton  (1951)  monotonous environment on just such a  imagined. Their  results, based  on male college  found the effects of deprivation of sensory stimuli deleterious to  the subjects. In some of the subjects own words; Eventually some subjects reached a state in which it took too much effort to concentrate, and they became, "content to let the mind drift" as one subject put it. Others said: "My mind just became full of sounds and colours, and I could not control it";  51 "I just ran out of things to think of"; "I couldn't think of anything to think about." Several subjects experienced "blank periods" when they did not seem to be thinking at all (Heron, 1957, p. 54). This is the effect of short term  monotony on  intelligent culturally  normal people. Think of the effects of monotony on back wards for babies left in cribs without stimulation during the early developmental years. Heron (1957) sums monotonous  up  his research  environment  has  by  stating that  negative  effects  prolonged on  the  exposure  to  individual.  a The  characteristics of these effects are, thinking impairments, childish emotions, visual halucinations, and  alteration in the brain wave pattern.  The recent studies indicate that normal functioning of the brain depends on a continuing arousal reaction generated in the reticular formation, which in turn depends on constant sensory bombardment. It appears that, aside from their specific functions, sensory stimuli have the general function of maintaining this arousal, and they rapidly lose their power to do so if they are restricted to the montonously repeated stimulation of an unchanging environment. Under these cicumstances the activity of the cortex may be impaired so that the brain behaves abnormally (Heron, 1957, p. 5). In  essence,  Heron  is  saying  colours).  the When  brain  creates  it's own  the  outside  environment is  (hallucinations,  sounds,  montonous and  unchanging the individual develops an  her  and  that  data  inner life of his or  own. Suedfeld  (1980) has  described early reports of the effects of SD  over stated. However, he also concludes; There is certainly no doubt that subjects in restrictive stimulation conditions experience perceptual phenomena. Among these are extremely vivid dreams, daydreams, fantasies, hypnagogic and hypnopompic imagery (that is, experiences that occur in the borderline state from wakefulness to sleep and vice versa), spontaneous firing in the retina, and perception of endogenous,  as  52 residual, or low intensity stimuli of which unaware (Suedfeld, 1980, p. 30).  the experimenter is  The effect of SD on a person includes; impaired cognitive functioning, hallucinations  or retinal  visual  phenomena, and  awareness of experiences  inside the mind that the 'outsider' cannot experience. The is  clinical evidence  important in developing a theoretical understanding of the PMR  have  been  institutionalized  from  early  childhood. This  concept  who  of inside/  outside has profound ramifications in terms of profoundly retarded persons who  were institutionalized early in life. The  other than feeding times and  back wards had  diaper changing. With  little activity  little or no  hugging,  interaction, games, or being taken for walks. It is difficult to imagine what inner life must have developed for those left alone through infancy and the developmental period. Christopher Burney  (1961) spent 586 days in solitary confinement. In  his book, Solitary Confinement, he depicts a ritualistic life that compensates for  the lack of stimulation. Burne} , at points, does not want to talk or 7  interact with even other prisoners, but only wants to be left alone to his solitary musings: In two places in this book I refer to my reluctance to correspond with my neighbour in the cell next door. On the first occasion my reason was a good one, since he might easily have been an informer. But on the second it was pure self-sufficiency. I simply could not be bothered to interrupt my own train of thought. Thinking - musing would be a better word - was by this time my whole life outside my appetite, and I can remember to this day how petulant I became about it. Once I had embarked on a train of thought I only wanted to stay on it, and it never occurred to me that my neighbour's desire to talk was no less legitimate than mine to be silent. (Burnej , 1961 p. xi). -  53 Burney is able to discuss his coping with monotony, because unlike the severely and profoundly retarded, he has language to tell the tale; As soon as I had fallen into a steady rhythm of pacing I would drift into day-dreams, mixtures of memory and desire, the past retouched to show it as the ideal life for any future (Burney, 1961,p. 21). Burney experiences life on the bedrock and finds it to be an "affair of  the mind  subjective  and reality  state  merely  of the person  the eternally needs  mysterious  understanding  beloved." The  in order  to create  knowledge of the experience. Burney told his tale of the life and mind of a man  in solitary  retarded  person  confinement. needs  telling  The tale in  of the severely and profoundly  order  to  promote  awareness  and  understanding of their subjective world and their adaptation to deprivation. The  use of autobiographical and anecdotal written material has been  criticized; It is impossible to gain from the published anecdotal literature a view of the effects of isolation and monotony uncontaminated by danger, physical privation, and uncertainty of rescue (Suedfeld, 1980, p. 4). This criticism of autobiographic records is pertinent to the clincical study  of stimulus  phenomena unfortunately and  deprivation, but not to the understanding  for the institutionalization an experience  of the PMR.  of the  Institutionalization is,  which encompasses physical  privation, danger,  uncertainty of danger. The previous sections cited passages concerning  the back wards noted; aggression physical  deprivation (in terms  uncertainty of rescue (release).  (which  could be construed  of food, toiletting,  as danger),  and confinement), and  54  The theoretical development  and explication of sensory deprivation has  been discussed by Robertson (1961). This author theorizes that; With a marked reduction of external stimuli, it is reasonable to assume that the interaction of external and internal stimuli is weighted considerably on the side of the latter. In extreme sensory deprivation, there is little or no interaction between internal and external stimuli and an individual response is probably determined entirely by various internal stimuli but the selective suppressing effect of external stimuli is lost, resulting in a sudden crowding of consciousness with material that is ordinarily unconscious. In such a case, a person may seem to compensate for the absence of external stimuli by projecting thoughts, feelings, images, which may then be reacted to as though they originated outside the person (Robertson, 1961, p. 34).  The  theoretical  point  Robertson  appears, to the person who  has  raises  is that  experienced SD,  the  internal  life  as if it orginated and  existed outside of the person. There is, for the person who  has experienced  long term SD, a confusion between inside and outside stimuli. The observer who  watched such a person would be unaware of the inner stimuli that  elicited  the emotional reactions  and  states  that  behavior  background  the  the  person's  or context. The  behaviors of that  importance  would  be  person. Robertson  detached  of the effects of SD  any  in developing  this phenomena in people is critical to the awareness of the PMR been exposed to long term SD  from  who  has  through institutionalization.  E. EMOTIONS In the  100 B.C., the Stoic Greek philosopher Epictetus, stated that it was not  events that xupset people but their perceptions of the events that upset them.  Epictetus was environment.  saying that emotions are a result of the person's appraisal of the The  role  of cognition  or  intellect  as  opposed  to the  affect or  55 emotions of humankind has fascinated philosophers,  psychologists, and people in  general. Cognitive evaluations 1968;  theorists have concluded that all  of situations as good or bad (Arnold,  Mandler,  1975; Schachter  &  Singer,  emotions presuppose cognitive 1960; Ellis,  1962). In other  1967; Lazarus, words, cognitive  appraisals lead to emotion reactions: What is an emotion? An emotion is a judgement or set of judgements, something we do. An emotion is a judgement which constitute our world, our surreality, and it's 'intentional objects.' An emotion is a basic judgement about our Selves and our place in the world, the projection of the value ' and ideals, structures and mythologies, according to which we live and through which we experience our lives (Solomon, 1976, p. 185) Emotion, then does not exist in its own right, as a special and almost mystical sort of entity, it is, rather an essential part of an entire sensing-moving-thinking-emoting complex. What we usually label as thinking is a relatively calm and dispassionate objective appraisal of a given situation.... And what we usually label as emoting is a relatively uncalm, passionate, and strong evaluating of some person or object (Ellis, 1967, p. 47). Emotions, according  to these authors, depend on people evaluating  their  environment; once the evaluation or appraisal has been made, then there is may emotional response; Different 1968).  appraisals  in people  lead  to different responses  (Lazarus,  It is possible that the same circumstance leads to different appraisals and responses  at different times  depending  on  how  we  interpret  the situation  (Solomon, 1976; Lazarus, 1968; Schachter, 1970). For example, when I am tired and  irritable I am more likely to respond to criticism with anger than when I  am  rested  and calm. It is also  proposed  by  appraisals result in different emotional responses;  these  theorists that different  56 They point out that all organisms evaluate their environments and that emotions depend on such prior cognitive evaluations. They also emphasize their belief that each emotional reaction is different because of the- particular appraisal that led to it. Different appraisals lead to different emotions (Plutchik, 1980, p. 287). The concept of the emotional response resulting from a prior appraisal is critical to this study. Once an appraisal is made, the emotion and  is the response  there is accompanying physiological arousal (Arnold, 1960; Lazarus. 1968;  Schachter & the  Singer, 1962). The response which  is manifested allows access to  subjective state of the person. A person without language, for instance, could  communicate his/her anger  at a specific situation through "showing"  the anger  response. Emotional  reactions  whether the person responses  may  be  viewed  as  a  is appraising the environment  are a way  to understand  that  communication  system for  as good or bad. Emotional  person  and his/her  view  of the  situation. The phenomenology of a person is available, to some degree, through their  emotional reactions  to an observer. Further, according to the cognitive  theory of emotions, the understanding of how the person perceives the world may be accessed through their emotional responses. Emotions  as cognitive  emotions as a communication  appraisals  of the environment  by a person and  system are central to access the subjective states,  thoughts and feelings of the severely and profoundly retarded non verbal adult. Emotions represent one of their few communication The  systems.  reading and inferring of the subjective state of the person through  emotional responses is difficult. It is, however, a major step in the development of  an  empathic  responses  perspective  to external  events  of the PMR. and objects  The  awareness  and separating  of the emotional these  stimuli  from  57 internal phenomena has the potential to increase understanding of the likes and dislikes of the person as well as to develop programs that are appealing, and hence motivating to the person.  CHAPTER III.  METHODOLOGY  SECTION I: THE FIELD RESEARCH TRADITION This describing,  chapter  will  defining, and  methodology. Section  be  divided into  applying  one  will  the  give  three  field  a  sections  research  general  For  the  tradition  account  purposes of  as  of the  a  research  field  research  tradition. Section two will discuss the research design of this study. Section three will  describe  the  application of the  field  research  tradition  and  present  an  example of the techniques of data collection, the researchers' role, analysis, and results of this methodology.  A. THE FIELD RESEARCH TRADITION Social conflicting  science  research  conceptions (Schwartz  of &  research  has  paradigms"  social Jacobs,  research 1979)  been  described  (Hammersley are  and  often  &  a  choice  Atkinson,  called  naturalism  "as  and  The  two  These  two  1983).  quantitative positivism  Atkinson, 1983). At issue, in this debate, between these two nature of the social world and how  between  and  qualitative  (Hammersley  &  paradigms is the  it should be studied.  historical development and  research  methodologies of the  qualitative  tradition will be reviewed in this section. Terminology in this tradition "and  the  exact  and  use  and  definition  of  these  terms,  as  words  like  field  research  qualitative tradition varies from user to user and from time to time" (Bogdan Biklen, 1982,  p. 3). This tradition has  work, ethnography, case  study, qualitative  field research" (Burgess, 1984,  many names; "and  &  is known as field  research, interpretive  procedures,  and  p. 2). In this study the term field research will  be used for this tradition.  58  59 Field (Bogdan &  research  been  associated with  Biklen, 1982), collected  1983), and traditions  has  studied from includes  the  collection  of "soft"  in natural settings (Hammersley &  the participant's point of view (Burgess,  particular  schools  or  methods  known  data  Atkinson,  1984). This  as  "symbolic  interactionism, inner perspective, the Chicago School, phenomenological, case study, interpretive,  ethnomethodological,  ecological,  and  descriptive"  (Bogdan  &  Biklen,  1982, p. 3). Regardless of the terminology, field research attempts to capture the insiders perspective and understanding of their world (Schwartz & Jacobs, 1979). Field  research  has  it's roots  in more  than  one  academic  discipline.  Understanding this tradition means transcending disciplinary boundaries (Bogdan  &  Biklen, 1982). The disciplines of anthropology, sociology, and social psychology are all part of the development of field research. The has  historical roots of field research are very old. The  been  cited  as  the  significant  developmental  period  last fifty years  for  this  tradition  (Hammersley & Atkinson, 1983, p. 4)  B. THE  HISTORICAL D E V E L O P M E N T  Field The  research has  important  historical context is important  theoretical as  and  epistemological foundations.  it contributed to the formation of this  tradition. This section will define field research and describe the historical context and the genesis of field research. Social characteristics experience  and  researchers and  using  "focus upon  construct  field  research  methodologies  the ways in which  reality"  (Burgess,  1984,  share  common  participants interpret p.  3). This  their  statement  is  significant in order to understand field research. The field researcher, in order to  60 understand the social world realizes that, "the actor acts towards his world on the basis of how  he sees it and not on the basis of how  the outside observer"  (Blumer, 1969,  p. 17). The  must  world  participant experiences  understand  the  as  the  the world appears to  researcher, in field it and  research,  not  as  an  objective fact that exists outside of that person. This is an important distinction between field  research  and  positive science. It is a fundamental foundation  field research that the social world is defined by the participants and  of  is not an  objective reality. The  historical emergence of field research occurred  the nineteenth century. This historical era was impact  of mass migration  problems  (Bogdan  documented foundation  in  &  from  Biklen,  descriptive,  rural  in-depth,  for field research. For  the time of urbanization and  areas to the  1982). The  social  and  in the latter part of  cities created  vast  suffering of this  moving  accounts  social  period  was  laid  the  which  example, photographic essays by  the  Jacob Riis  (1870) exposed the dreadful life of the working poor in America. Le Play (1879), used a method called "participant observation" to study working class families by living with these families becoming a natural part of the "setting." This  period  photographers, and  also  had  journalists,  social  workers,  statisticians attempt to expose the suffering and  the poor in order to promote a social remedy to end This  trend  conditions  continued of the  social  into  the  poor being  1900s  employed  with by  rich  surveyors, conditions of  the wretched conditions.  descriptive accounts  different  groups  to  of  the  promote social  change. Survey's became an important tool for social research. Booth (1886) used surveys in London over a seventeen year period. Booth employed surveys  and  statistical analysis that were interwoven with rich descriptive accounts of human  61 stories. At this time field  research  and the quantitative  approach  were used  together to provide an account of the lives of Londoners.  C. ANTHROPOLOGICAL MODELS OF FIELD RESEARCH Anthropology  applied  the concept of field researchers  studying  people in  their natural setting as a methodology for understanding foreign culture. Franz Boas was perhaps the earliest significant contributor  to this fledgling tradition  (Bogdan & Biklen, 1982, p. 8). Boas believed in the use of ethnographic accounts from people who had spent time in the "natural setting." The time spent in the natural setting, at this point, was very brief but the idea of studying  foreign  cultures by living in them had taken root. Radcliffe-Brown in 1910 went to Australia to study Aboriginal culture. His research  took him to a hospital setting where he met with the Aboriginals.  Though, in retrospect, his work did not take him to the natural setting of the Aborigines, like  Boas,  Radcliffe-Brown did not rely on accounts from for his insights and met  first  hand  with  the  people  he  sought  to  understand.  Radcliffe-Brown's work has been criticized as "the veranda model" of ethnography because the Aboriginals  were summoned  interpreters where the researcher  to his veranda, often  accompanied by  questioned the specific Aboriginal out of context  with respect to the natural setting and with no real experience with the person. Bronislav Malinoski (1922) was the first anthropologist to consciously want to capture the foreign culture by living and being a part of the natural setting within the culture he was studying. Malinoski attempted to live, speak the native tongue, and be a familar part of the Trobiand Islanders' lives. In his own words he  wanted  to "grasp the natives  point of view" (in Bogdan &  Biklen, 1982).  62 Malinoski's (1967) diary reveals his own frustration and sense of failure to truly grasp  "the natives  Malinoski  point  of view" despite  referred to this particular type  all of his efforts. The critics of of anthroplogical field  work  as the  "noblese oblige" period. It was referred to by this name as this time period was equated with the Industrialized nations exploiting the third world. Anthropology continued participant  observation  to study native culture through field research and  under  functionalists. Evans-Pritchard  and  developing  school  called  the structural  (1940) in his classic work the Nuer is an example  of this school of anthroplogy. this research  a  Margaret Mead and Ruth Benedict  contributed to  tradition and approach. Mead's work on the South Sea Islanders  Benedict's studies with the Indians of the South West United  States are a  continuation of anthroplogical research through participant observation.  D. SOCIOLOGICAL MODELS OF FIELD RESEARCH Field  research  (Hammersley  &  methods  Atkinson,  have  also  been  an integral  part  of sociology  1983). Sociologists have employed both field research  methods and the quantitative methods. Max Weber, one of the major figures in sociology, developed  a concept called  "Verstehen" which  emphasizes sociological  inquiry that has as it's goal an empathic appreciation of the person (Schwartz & Jacobs, 1979). Weber's influence assisted sociological methods in gaining the perspective of the  participant being  studied. A  Weber was the founding  major  step  in field  research  which  followed  of the "Chicago School." This school in the 1920s and  1930s contributed enormously to field research by using participant observation in natural settings (Bogdan & Biklen, 1982). The Chicago School  grew, flourished,  63 and  was  responsible  America  (Thomas  (Zorbaugh,  1929)  &  for such  works  Znamieli,  to mention  as  1927)  and  but a few  Chicago School crossed the boundary  the  Polish  the  Gold  Peasant  in Europe  Coast  of the works from  and  the  and Slum  this school. The  to anthropological methods under  one it's  founding members Park. It was Park's contention, "indicated in a paper that  was  to be the blueprint for the Chicago School studies that anthropological methods which had been useful to study North American Indians should be used in the study of inhabitants of the Chicago area" (Burgess, 1984, p. 16). The Chicago School relied on the study of a single case, whether it was a person, group, or neighbourhood  (Bogdan  &  Biklen, 1982). The  approach used  in the research was called interactionistic. This method emphasized the social and interactional nature of reality. Sociology had moved away from social work, social action, and the  reformist tendencies, and taken up the study and  social world for it's own  minority  groups  and  sake. The  understanding of  Chicago School focussed primarily on  deviant individuals which  set the tone for much  of the  sociological investigation of that period. A  similar  and  parallel  approach  arose in Britian.  This  approach  was  labeled 'community and locality studies' (Burgess, 1984). This approach involved research  strategies  techniques,  of living in the field, using  observations, and  the  collection  key  informants,  documentary  of statistical data. Sociology  had  become a scientific discipline through the evolution of the field research tradition and distinguished itself from social work and social reform movements.  64 E. T H E EPISTEMOLOGY  OF FIELD  RESEARCH  Field research is interested in the meaning people ascribe to events and to  their  developed  lives. This section by  G.M.  Mead  will  examine  and Herbert  the theory of the social  Blumer. These  men  world as  conceptualized a  perspective of the "self and the social world that form the basis of the field research approach to investigating the social world. Mead (1863 - 1931) is often considered the founder of social psychology. Mead developed the discipline of social psychology on the premise that: The self is no longer some structure of inner people which exist in all human psyches. It is the internalizations of the social processes by which groups of people mutually interact. Learning to participate in group action gives one a sense of self and vice versa. (Schwartz & Jacobs, 1979, p. 23). Field research undertakes to not only observe the actions and reactions of the participant as an outsider but seeks to understand participant's  point  of view.  Mead  saw  social  the actions from the  research as not attempting to  understand an objective world of empirical fact, but to uncover the understanding of the meaning that the participants ascribe to the world. Herbert Blumer (1969) applied the term  "symbolic interactionism" to this  approach of understanding people and the nature of the social world. A concise summary of Blumer's theory of symbolic interactionism is: It (symbolic interactionism) doesn't regard meaning as emanating from the intrinsic make up, nor does it see meaning arising through the psychological elements between people. The meaning of a thing for a person grows out of the ways in which other persons act towards the person with regard to the thing. Their actions define the thing for the person; thus symbolic interactionism sees meaning as social products formed through activities of people interacting (Blumer, 1969. p. 4).  The symbolic interactionist perspective is at the center of the issue of the  65 nature  of the social world  techniques, and seeing  the  how  to study  strategies require the  world  creation of new  and  from  the  participant  it. The  methodologies,  researcher taking the perspective, and  research  participant's role,  being  aware  of the  definitions of self and the social world.  In the view of interactionists, people interpret stimuli, and these interpretations, continually under revision as events unfold, shape their actions. The same physical stimulus can mean different things to different people and, indeed, to the same person at different times (Hammersley & Atkinson, 1983, p. 7).  F. R E S E A R C H TECHNIQUES E M P L O Y E D IN FIELD WORK This section will review the various methods and  techniques employed in  field work. Most commonly, field researchers are found in "natural settings." The first step the field researcher must accomplish is to "gain access" to the setting that has been selected for the research. Gaining access means obtaining formal permission to carry out the research (Bogdan & Hammersley  &  Biklen, 1982;  Atkinson, 1983). Once formal access has  Burgess,  been granted  1984; to the  researcher informal access needs to be achieved. Informal access refers to gaining permission and  acceptance  from  the actual participants who  are to be studied.  Formal access often can mean that permission is sought from an authority who will not be in the setting or a participant in the study. Thus informal access from  the participants is key  if the research goal of achieving the participants'  perspective is to be achieved. This stage is synonomous with establishing rapport with the participants. Once accessed has been granted and rapport developed the research can begin. The include  the  methods careful  a field researcher utilizes recording of  field  notes,  to collect indepth  data  in the  setting  interviews, formal  and  66  informal observations, documentary analysis, and the use of a field journal. The will be  field researcher develops a sampling frame for times that observations  done in the setting. The  sampling  frame must be  comprehensive  and  ensure that observations will cover all aspects of the lives, places, and events of the  participants. Once  the  sampling  observe in the setting in accordance  frame  is determined  the  researcher  with the schedule. There are two  observations the researcher records; these are informal and  will  types of  formal observations.  The  purpose of informal observations is to build a data base about the setting  and  the participants in general. The  formal observations are close and  detailed  observations of specifically chosen events, persons, or activities. Two first is  other techniques  are important  the field journal. The  in carrying out field research.  researcher  records impressions,  notes, records personal feelings, thoughts, ideas, and  The  makes analytic  significant events in a field  journal. This journal is a diary of the research process and the reflexivity of the researcher's role in the setting. The  second  important  technique  is  the  researcher's  development  of  sensitizing concepts to develop an awareness of the patterns and understanding of the participants in the setting. The characterized  has  being  on  the  top  beginning stages of field research have been of a  funnel. The  funnel appears  to the  researcher as large, but at this stage the researcher must remain open to all concepts, ideas, and  experiences. As  the research develops  the funnel narrows  and the researcher becomes increasingly focussed (Hammersley & Atkinson, 1983). In  summary, the first stage  rapport, developing and  the  of research, is gaining access, developing  sensitizing concepts, and  setting. The  funnel, at this  time  remaining is very  open to the participants wide  and  the  researcher  67  experiences a sense of bewilderment at the top of the funnel. The  second  stage in the research process involves developing an extensive  'data base.' The researcher, by this time, should be an accepted an unobtrusive part of the setting. The informal and formal observations serve to build the data base. The hunches, insights, and analytic notes of the researcher are kept in the field journal. The sampling frame should be comprehensive to capture the full life of  the participants and  danger  of 'going  ensure  an  adequate data base. There is sometimes a  native' (Burgess,  becomes so involved with  the  1984). This  refers  to  a  researcher  who  participants' perspective that there is an  over  identification with the participants. The researcher must be aware of the dynamic of over involvement  and  the field journal is an excellent place to monitor this  'going native' and avoid saturation in the setting. The  data  base  is constantly  concepts, analytic notes, and  reviewed  a  break  from  the  the  researcher. Sensitizing  'hunches' have to be explored to determine  efficacy in analyzing the data base. The take  by  setting  researcher, before becoming lost, should  to maintain  his perspective and  review  emerging sensitizing concepts. This allows the theory to emerge from The  review  of  the  data  base  for  key  words,  events,  researcher now  the  the data.  topics,  inconsistencies and exceptionalities is important in preparing to code and the data. The  their  patterns, analyse  starts to focus more specifically in the setting.  The researching is moving down the funnel. Once the data base is complete the researcher codes the data. The  coding categories must allow for the inclusiveness  of all participants, events, and settings. The  sensitizing  concepts  and  theory  must  be  constantly reviewed  for  inclusiveness of data. The analytic framework that is developed from this process  68 arises  from  the  data.  The  researcher  uses  induction  in  developing  a  comprehensive analysis of the data. Data analysis requires coding the data. The researcher through form  sensitizing concepts  develops  categories and typologies which  a model for the analysis of the data base. The analytic framework is  checked, to ensure frequency  and distribution of categories is taken into account  in the emerging model. The method of constant comparison is used to review the data  for inclusiveness of typical  cases,  negative  cases,  and  the researcher  inductively develops theory from this process. The  researcher  is now  ready  to triangulate the data  and his model.  Triangulation entails matching the coding categories the researcher has developed converging  and correlating with each other. The coding categories triangulate  if  they occur in different contexts, at different times, and in different places in the data base. The degree of triangulation is dependent on the inclusiveness of the researcher's model. The  final stage of field research is linking the model to theory. The field  research approach has been a major contributior to the creation of theory. The more general and abstract the categories developed  by the researcher are,  the  more likely the model will link to formal theory (Glaser & Strauss, 1969).  G. REFLEXIVITY A  unique perspective of field research is the awareness of the impact of  the researcher on social phenomenon being studied. There is no way in which we can escape the social world in order to study it; nor, fortunatley, is that necessary (Hammersley & Atkinson, 1983, p. 15). Field research's recognition of the importance of reflexivity demands that  69 the  researcher  understands  the  effects  of himself on  the  setting  by  testing  hypotheses against other information and data collected in the setting. The  focus of field research is in the participants' natural setting, gaining  the insiders perspective, and  recognizing that social reality is constantly shifting  as people interact to construct the social world. Reflexivity means that the field researcher must take into account his effect on the social setting and constantly reflect upon the reciprocity  between himself, the  setting, and  the participants.  Reflexivity is at the heart of field research. It is a fundamental tenet to this tradition and  means there is not a separate, distinct, objective social world of  'fact.' Theory, the process of social inquiry, and tradition, together with the participants and  the setting are viewed as part of  the same reality and are all part of understanding this tradition, a simultaneousness  analysis in the field research  the social world. There is, in  to the social world, theory, research  procedures,  and analysis. The field researcher must be aware of this reality in understanding and gaining the participants' point of view.  H. GROUNDED THEORY An theory  important  (Glaser &  role of the field research tradition is the development of  Strauss, 1967). The  theory emerge from the data. The between the theory and  field  research tradition intentionally  has  emergence of theory from data ensures a 'fit'  the social phenomenon being studied (Glaser &  Strauss,  1967). Grounded theory requires that the field researcher inductively compares his theory and  data with other theory, data, and  world. Theoretical integration is extremely theory is to be  generated.  phenomenon concerning the social  important  if formal  and  substantive  70 Grounded  theory  begins  with  the  study  of a  defined  social  unit.  The  interpretation of a social unit can be; 'a person, a status, a type of behavior, a relationship, a group, or a nation' (Strauss &  Glaser, 1970,  social unit is defined it is essential the field  researcher develop  sampling  frame over  a temporal  span which will capture  p. 4). Once the an  adequate  the setting and  the  lives of the participants. The goal of this research tradition "is focused on analytic abstractions and constructions for the purpose of description, or verification, and/or generation of theory" (Strauss &  Glaser, 1970,  p. 4). The  concept  of grounded theory uses  induction to develop even more inclusive theory, if the researcher's data base is large enough to warrant this procedure. The new  theory  nature of the field research paradigm using the induction of substantive and  allows for the generation of formal theory  through  the  method of constant comparison against the researcher's model.  I. SUMMARY The and  field research tradition has  it's roots in specific historical conditions  as a reaction to the rise of positivistic science (Hammersley &  1983). This  was  a  research is concerned self consciousness  reaction to the  objectivication  with the symbolic  of the  social  Atkinson,  world.  Field  interaction of social awareness and  the  of people. This offers a unique perspective for understanding  the social world. The  recognition that "the self is the definition people create  (through interacting with others of who  they are)" (Bogdan &  Biklen, 1982,  p.  34). Thus the self is perceived as a social construction. Field research examines the meanings people  ascribe to their world  from their perspective. The  role of  71 the person in interpreting the social is embedded in this tradition "basic to the approach is the assumption that human experience is mediated by interpretation" (Blumer, 1969, p. 17). The  recognition of the social construction of the self and the social world  through interaction is fundamental to field research; The emphasis upon meanings that individuals construct and modify during the process of interaction holds implications for research (Burgess, 1984, p. 4). The research process consists of defining a social unit, gaining access to a natural setting, developing principle  of reflexivity  rapport, and 'grasping' the insiders perspective. The  monitors  the impact  of the researcher  on the social  phenomenon being studied. The goal of this research paradigm is to explicate the common sense ordinary perspective of the insider and his subjective experience of the social world. The field researcher has a view that human actions "are based upon, or infused by social meanings, intentions, motives, attitudes and beliefs" (Hammersley & Atkinson, 1983, p. 7).  CHAPTER III.  METHODOLOGY  SECTION II: RESEARCH DESIGN This section will review field research as a methodology with the  PMR.  The  research design including, the role of the researcher, selecting the sample  and  case, gaining access to the setting, the observation schedule, entering the  setting, developing rapport with the participants and staff, and analysing the data will be presented.  A. FIELD RESEARCH AND THE PROFOUNDLY MENTALLY RETARDED The  research methodology  for this project employs  a design similar to  anthropological field work. Recognition in the literature of the need for small, wholistic, in depth case studies of the PMR identified  (Bercovici,  1981,  Edgerton, 1964; Okolo &  1983;  Edgerton,  in their natural setting has been 1984;  Gollay, 1981;  McAndrew  &  Guskin, 1984; Taylor & Bogdan, 1981).  It is the consensus of this literature that, if we are to improve our understanding of the community adaptation of retarded persons, we must study their lives wholistically rather than in laboratories, and we must listen to these people as they express their own views (Edgerton, 1984, p. 2). One  barrier with  the PMR  is the difficulty  in listening to 'their  own  views' as the}' do not develop a verbal language system. Thus, the traditional field research method of including interviews with the participants is not available with  the  PMR.  settings; group  There  have  homes, activity  been  no  inclusive  centers, and  studies done  community  in the natural  outings of the  PMR.  Observation will be the major technique employed in this study. Observation is an  important  scientific  procedure;  'Science  recording of empirical events' (Heal &  begins  with  Fujuria, 1984, 72  observation  p. 20). The  and  the  observations  73 from this study will be a first step in describing and analysing the behavior and daily living patterns of the PMR  in the contexts of a community setting.  The observations will record the empirical aspects of the subjective states of  the  participants.  Awarness  of  the  subjective  states  and  phenomenological  aspects is important in developing a body of knowledge concerning the Accessing the subjective states of the PMR  PMR.  has been proposed;  We must be rigorous in our attempts to develop techniques to understand the subjective states of those we have not traditionally considered as being possible to understand. If we have not understood the severely disabled person, it is because we have not really attempted to do so. The problem is ours and not theirs. (Taylor & Bogdan, 1981, p. 80). The research design will move past laboratory experiments and observe all aspects of the lives of the PMR and  subjective states. The  in an attempt to rigorously grasp their views  researcher will become a part of the natural setting  and contexts of the lives of the participants as has been suggested; To carry out such ethnographic naturalism, we must have prolonged contact with people, and we must become, if only relative^ so, a 'natural' part of the lives of mentally retarded persons. By virtue of our prolonged and somewhat unpredictable presence in their world, we hope to see more than the obvious (Edgerton, 1984, p. 6). The 1979,  PMR  McAndrew  attempt  through  have been viewed &  Edgerton,  as  1964,  a  fringe  group  Wolfensberger,  of humanity  1972).  This  observation to enter into the world of the PMR  (Cleland,  study and  will  observe  first hand their daily emotional responses and interactions to develop description, verification of existing theory, and new  theory from the data base;  Just because peoples' subjective states may not be directly to us- as in the case of nonverbal retarded persons, this mean that they do not have subjective states. If we understood the severely disabled person, it is because we attempted to do so (Taylor & Bogdan, 1981, p. 80).  accessible does not have not have not  74 The  research  design  participant observation. The  utilized  observes  participants.  of  goals  field  research  methodology  known  as  researcher as participant observer becomes a natural  part of the setting and The  a  with minimal disruption the daily life of the  participant  observation  have  been  summarized  by  Madge (1953). The primary task of the participant observer is to enter into the life of the community being studied. If this task is achieved, there will be two consequences: his subjects will learn to take him for granted and thus to behave almost as though he were not there, and he will learn to think almost as they think (In Edgerton & Langess, 1984, p. 339). In  summary,  the  research  design  was  a  field  research  methodology  utilizing participant observation. The researcher entered into the natural setting of the  participants and  become a  natural part of their  community. The  design  utilized observation of the participants through prolonged exposure to their normal daity activities. The through lives.  observations  participants point of view and of their  activities  and  subjective state was  emotional  described  responses in their daily  CHAPTER III. METHODOLOGY SECTION III: THE RESEARCH METHODOLOGY This section will apply the field research approach to a specific and  case of the PMR.  study,  the  entering  role  The  of the  details of selecting the sample  researcher,  gaining  the setting, developing rapport  access, the  and  sample  the case for  observation schedule,  with the participants  and  staff, data  collection techniques, and analysing the data will be reported.  A. THE SAMPLE AND THE CASE The sample  and case of study in field research has been defined as a  social unit (Strauss & home  Glaser, 1970). The social unit for this study is a group  of deinstitutionalized  retarded  in British  mentally  retarded  institutional  PMR  Columbia and  has  private  placement. The  adults.  Deinstitutionalization  entailed operators  majority  utilizing of  of the mentally  non-profit societies for the  homes  as  the  of the deinstitutionalized  alternative population  to  have  gone to community group homes. Community group homes are usually eight or fewer people unrelated by blood who  live in a house. The staff in group homes  usually work in shifts and do not live in the group home. Table 4 details the number of institutional placements versus community placements in British Columbia for the period 1984-85 to 1985-86. The decline in the  institutional  institution  population  in British  in 1985-86  is the  result  of the  Columbia. Table 5 details the placement  closure  of one  of the resident  population of that institution. Table 5 lists the type of placement residents from Institution X. These  tables were compiled using the 1984-85, 1985-86, Annual  Reports of the British Columbia Ministry of Human Resources.  75  76  Table 4: The Decline of Institutional Placements Between 1984 and 1986 Year  Community Placements  Institutional Placements  1984-85  1590  1331  1985-86  1868  987  Table 5: TheAdmissions, Discharges, and Closure of Institution X 1983 to 1985  1  Year  Admisssions  Discharges  1984-85  6  321  0  1985-86  17  33  315  Admissions: Discharges:  1  Resident Population on March 31  Respite admissions for period March-August, 1984 257 Commuity Placements 7 Community placements after short-term admissions 54 Transfers 4 Deaths  Table 6: The Type of Residential Facility Residents from Institution X Were Placed To Family Home  To Independent Home  To Community Residential Facility  To Another Institution  0  0  257  54  77 The  sample  was  selected,  with  regard  to Cleland's  (1979) point of  separating severely and profoundly retarded persons for the purposes of research. All of the participants were profoundly retarded nonverbal deinstituionalized adults. The  case, or social unit of the study was a group  resided in a group  of five PMR  persons who  home. The typicality of the social unit was integral to the  study. The social unit chosen reflected common group home size in the area the studied  was done. The non-profit Society  which provided the service operated  eleven group homes. The group homes had between three and seven people with a median and mode of four persons per group  home and an average  of 3.1  residents per home. The  sample  and case met the typicality  requirements  for the research  project, and formed the social unit for the study.  B. CONFIDENTIALITY AND RESEARCH CONSENT The  name of the non-profit organization, the participants, the staff, the  municipality, and the group home site have been changed to protect the integrity and rights of the participants. The confidentiality of everyone  in the study was  guaranteed as part of the consent to participate in the research agreement. The  non-profit agency provided consent for the participants as they were  unable due to mental incapacity to provide informed consent of their own. The agency had a twelve person Board unanimous  in their  approached  by  of Directors. The Board  of Directors were  approval of the research proposal. The staff  the researcher for consent  to participate  were also  in the study. The  approval and permission of the staff was also unanimous. The letters of research consent and agreement to participate in the study are in Appendix A.  78 C. THE  R O L E OF  The  role  continuum  that  THE  of the falls  RESEARCHER field  somewhere  'complete observer' roles. The along  this  researcher  continuum  'observer-as-participant'  between  be  the  regarded  'complete  as  a  point on  participant'  and  a the  other roles that have been described as points are  (Gold,  may  1958;  the  'participant-as-observer'  Junker,  1960;  Hammersley  and &  the  Atkinson,  1983). The  complete participation role is characterized by  the researcher being  covert about his research and attempts to pretend that he is a natural part of the setting. The  role of complete participation, while superficially very appealing,  contains difficulties for the researcher. Some of these difficulties are; the inability to openly record information, tape interviews, and as  the  reseacher.  The  complete  participant  step back and observe openly  role  also  regarding the rights of the participants to privacy, no  has  ethical  problems  written consent  to be  research subjects, and the deceitfulness of the researcher in the setting. The  'complete observer' role is again  complete observer has through  no  a covert role. The  researcher as  contact with the participants. Observation  a one-way mirror or from  a window. The  is usually  researcher is removed from  the participants, cannot use interviews, have direct interaction, or access to the full context of the participants' lives. There  are ethical implications with this  approach due to the covert nature, as stated for complete participation. The disadvantages of these two researcher roles are; Adopting either of these roles alone would make it very difficult to generate and test theory in a rigorous manner, though both may be useful strategies to adopt during particular phases of the fieldwork, and in some situations may be necessary (Hammersley & Atkinson, 1983, p. 96).  79 The his  participant as observer role allows the researcher to openly state  research  intentions to the  participants.  The  participant  observer  role  allows the researcher to participate, yet, still be a full time researcher and not displace a role in the natural setting, or to be tied to that role to the detriment of the research role. The participant  observer as  as  observer  participant role. The  is  a  more  contact  the  formal  researcher  role  than  the  has  with  the  participants is brief and formal (Burgess, 1984). The observer as participant role is essentially observation only. The  participant observer role was  study. The  researcher was  setting. The  employment  Society. This  an  employee for the nonprofit society in the  position was  employment  the goal of the researcher for this  status was  that of Executive  Director for the  a  for role conflict  potential  area  between the researcher and the staff of the group home and day program. In essence, the potential conflict was their usual patterns of behavior was  a designated  that the staff would significantly alter  due  to the presence of the 'boss.' There  supervisor in each program  who  hired, appraised,  and  supervisors to review  the  supervised the staff. The  researcher  research and was  with  the  staff and  explain the purpose of the study. The  discussed  with  (ASWS) if they would  met  everyone. The  staff, called  perceived the researcher as an  alter their usual patterns in the  supervisors'  roles  were  participant observer. The  reinforced as  potential role conflict  Adult  Service  Administrator  and  Workers "boss"  presence of the researcher.  well  as  the  role of the researcher was  researcher's  The  role  as  to participate as  an  80  Adult Service Worker (ASW) in the setting. The  ASWs served  as the direct care staff for the participants  in  both the group home and the day program. The researcher did not consider a  participant observer  role as a profoundly  mentally  retarded participant.  Thus, the researcher took a participant observer role as an ASW was  and this  acceptable to the supervisors and the staff. The  role as ASW  required the researcher to assist the participants  in, eating, bathing, dressing, toiletting, and all aspects of the participants' day  to day lives. The role of ASW  also required food preparation, house  cleaning, floor washing, dish washing, and other  domestic  activities. The  researcher as a result of these duties dressed in the clothes of the ASWs, that is in blue jeans, casusal shirts, and runners. The performance of these duties did much to reduce the role conflict. The researcher, on entering the setting, in many respects sought assistance from the ASWs in regards to routines  and duties. The role  conflict  diminished  and acceptance  as a  participant observer and not as "boss" by the supervisors and ASWs was achieved through the on going participation in the setting. The  acceptance  and rapport  that  was  established  between the  researcher and the staff was concretely shown through participation as an ASW. An example was that the researcher often drove the van on outings as he possessed  a 'class 4' licence. The eight weeks in the setting was  ample time to become familiar with the routines and duties of the staff. It seemed to the researcher that the staff accepted him as a staff member in the setting and this was commented on by the ASWs to the researcher. Another safe guard, with respect to role conflict, was the prolonged  81  exposure of the researcher in the the  setting for eight weeks and  six hours. The time and  setting. The  researcher was  present in  the observation times ranged from two  to  ability of people to manage their impressions decreases over  with familiarity of an observer in a setting.  The  acceptance  by  the  participants  was  a  different  matter.  The  participants did not appear to have a difficulty in accepting the researcher as an able  ASW  participant observer. Through familiarity, the  to become a  natural  part  of the  setting and  researcher,  was  able to observe  the  normal activities of the participants with minimal notice by or the ASWs. The the  participants  researcher through the ASW  in  many  situations.  participants through familiarity and  role became familiar with  rapport  developed  with  trust in daily interactions. The  of trust between the researcher and The  The  the participants  the  concept  the participants is difficult to explain.  concrete acts that that led the  researcher to believe  that trust  had  developed were incidents such as; participants hugging the researcher after several visits to the setting, participants leading the researcher to the door and  upon  the  researcher  researcher's hand and The includes  one  to one  outings,  access to many  opening  taking him  door  the  participant  taking  the  for a walk.  situations the  walks, bathing, situations for the  have been missed had  the  there not  researcher had  and  dressing.  researcher  with the  These  situations  for observation  been rapport with the  participants allowed  that  would  participants  and  staff. There  is a  danger  of  'going  native'  (Malinoski,  identifying with participants in the setting. There were two  1922)  and  over  classes, in some  82 respects, of participants, the staff, and participants did not seem to be observer. There was  the  PMR  participants. The  aware of the role of the researcher  not a danger in over-identifying with the PMR  sense of 'going native.' The  PMR as  in the  difference in ability, communication, and needs  were so significant as to preclude the 'going native' dynamic. The relationship between the researcher and the staff was matter. The  staff  communication,  and  maintain  an  was  manifested social  a  role.  similarity The  to  balance  outsider/insider equation.  a different  the  researcher  in ability,  the  researcher  sought  This  equation  allowed  to the  researcher the insiders' view while maintaining a perspective that permitted analysis of the data which did not reflect a bias from 'over-rapport' with the staff (Hammersley  &  Atkinson,  much of the participants' behavior the researcher. The  1983). For example, the staff viewed as 'self-stimming' and  view of stereotypic behavior  have biased the analysis of the data and for  explaining stereotypic movement. The  explained this to  as self-stimulation would  provided a theoretical framework researcher  was  aware  of the  dynamic and tried to guard against the tendency to accept the opinions and the ideas of the staff. The  researcher recorded  all his observation openly  staff and  participants. The  study and  the role of the researcher. The  to, within the ease. The  staff had  first week of the  researcher had  been briefed on staff and  in front of the  the nature  of the  researcher were able  study, work together  with  facility  in the past worked in group homes and  familiar with the routines and  duties of group home workers. The  both the group home and  program were not often visited due  day  and was  staff in to the  83 behaviors  of  their  clients.  The  staff  of  both  programs  welcomed  the  researcher and the interest shown in their programs. The  researcher had done a small pilot study fourteen months earlier  on the participants. Due with the PMR  to the high turn over rate in the staff who  work  none of the staff from the pilot project were employed in  either program. The  pilot project had  researcher to the PMR  and  served to acquaint and  sensitize the  the role of the staff, but not to specific staff  members.  D. D A T A COLLECTION AND The  researcher  R E S E A R C H TECHNIQUES  maintained  a  field  journal, a  field  notebook  to record  observations, and typed the observations into a computer in a protocol format for analysis. Each of these items used will be reviewed below as to their application in the study.  1. The  Field Journal A  field journal was  doing the study. The  maintained  on a daily basis by  field journal or diary was  the researcher while  used to record, the reseacher's  impressions, analytic notes, and to record significant thoughts and the setting. The  diary was  ideas while in  also used to record reflections on the study and the  researcher's role in the setting. As time was  spent in the setting the reflections  on the study began to include speculation on emerging trends, patterns that were noticed, and possible coding categories for the analysis of the data. The  field journal became the forum for the researcher to reflect on ethical  implications of the study and  the participants he was  observing. It was  in the  84 field  diary  the reseacher  monitored  his thoughts  and feelings  concerning his  relationship with the participants and with the staff, that is the reflexive action of  the observed  changing  because of' the observer  and the observer  changing  because of the observed. The researcher in the diary began to note inferences he had seen, ideas that arose for coding, analysis, and for clarification. It has been noted that: In no other form of research is the process of doing the study, and the people who are doing it, so consciously considered and studied as part of the project. The reflective part of the fieldnotes is one way of attempting to acknowledge and control the observer's effect. The reflective part of field notes insists that research, like all human behavior, is a subjective process. (Bogdan & Biklen, 1982, p. 32).  The  researcher  wrote  in the field  journal  discussions with  the staff,  comments they made, and specific insights and feelings concerning the role of the researcher in relation to the staff. The field journal was also utilized by the researcher to note the actions and interactions between the researcher and the participants.  For example, one entry  concerned  favouritism with  one of the  participants. A portion of the journal entry dated April 1st, 1987 reads; I must watch favouritism with June. She has come to me immediately when I enter the house. She was so well behaved on the walk and the visit to Unity. June and April did, I guess, compete for my attention. The field diary was used to develop inferences from the data. An example of developing inferences in the journal is the entry on April 19th, 1987 reads; It's nerve racking, these formal observations, the participant/participant interaction was a good idea but there is so little of it that I wrote other observations as well. However, a coding idea might be INNER OUTER INNER-> the participants seem so inward, it would be important to read about others from deprived backgrounds (ie.) solitary confinement, long time prisoners, etc. My hunch is that the finger staring, circle walking, stereotypic behavior, noises (guuurring, eeeaaahhhing), maybe  85 even the self-abuse is their inward 'island universe' response to years of instituionalization and the cultural abheration that is a response to deprivation. OUTER-> this is the clients interaction with the environment. It is the overlap of their inward life on to the world. It is their point of entry for us to them and for them to our world. My hunch is the hugging, wanting to go for walks, pushing, even to an extent food, back rubs, maybe even the bathing is their outer actions, their contact with the social world.  In summary the field journal was used to monitor reflexivity, inferences, and impressions by the researcher throughout the study.  2. The Field Notebook The The  researcher kept observation notes each time he was in the setting.  observation notes were made in a stenographers  note pad, and the date,  place, participants and staff were recorded at the start of each observation. The overt role of the researcher openly  as participant observer  allowed  the researcher to  record the observations in the setting. The open recording of events as  they occurred did not bother the participants or the staff. The field notes began with informal observations for a two week period where the researcher recorded settings, perspective  participants,  and  the tone, mood, and general description of the  staff.  The  informal  stage  and  facilitated  at the informal  observations  were  the researcher  a  wide  in achieving  acceptance in the setting. The informal observation sensitized the researcher to the routine, participants, and staff. The researcher  sought to write the fields  notes as objectively as possible including the details of what occurred. The  formal  seven focussed  observation  observations  notes  were  more  specific. The  researcher  to note the interactions that occurred  participants. The participant interactions were few in number  used  between the  and duration. The  86  researcher included in these focussed observations details of dress, colour, sound, and routine in the setting. The formal observations included a detailed observation of each one of the participant for a seven day period. It was  during these individual  observations  that a rapport between the researcher and participant seemed to heighten. For example,  at the  end of a week of formal observations  the  researcher had a  sense of the likes and dislikes of that particular participant. The researcher made observations  as  to  each  participant's  favourite  place  to  sit,  activities  the  participant engaged in, favourite music, and visible emotional responses during the seven day observation period. The researcher spent many hours alone with that participant. The  researcher  was  involved  in  all  aspects  of  the  participant's  life  including; bathing, toileting, dressing, eating, activities, and outings. The fieldnotes recorded all the events that transpired for each of the participants during the seven  day  formal  observation  period.  (The  observation  schedule  is  listed  in  Appendix B).  3. The Protocols The written observations from the field notebook were then typed into a protocol format. The format used allowed for ease of reading and coding of the details and descriptions of the activities. The researcher typed the field notes into a computer using a protocol format. The typed protocol format facilitated coding of the  data through the  lay  out  and numbering of each  the  line of the  protocol. The use of the computer was only for word processing and retrieval of additional copies for analysis (see Appendix C for examples of an informal and  87  formal protocol). The  observations from the field notebook were typed into the computer at  the end of the observation. This process of transcribing the observations daily served a useful function other than for ease of data analysis. This function was the  researcher  reread  the fieldnotes  as he typed  and this  often provided a  familiarity with the data that might have been missed. For example after an observation and recording the observations in the field notebook the observations were then typed into the computer and the complete observation would be relived and  the participants' behavior re-experienced. Often comments and insights were  added to the field journal during the typing phase. The  protocols became the data  coded. The protocols were  reviewed  base  that the researcher  during  the time  analysed and  in the setting  by the  researcher to search for patterns, trends, and concepts. Notes were made on the protocols and reviewed again throughout the project.  4. D a t a  Analysis  The  assumptions underlying the field research approach posit the lack of  separation between the collection of data and the analysis of data phase. Data analysis was continual throughout involved  a constant and continuous  the research project. The process of analysis review  of the data. The field diary noted,  hunches, patterns, analysis, themes, and categories. The researcher engaged in the development of sensitizing concepts  daily  to capture  in these concepts the  maximum amount of data. Field research requires researchers to treat the social unit  they  study  as 'anthropologically strange' in order  to make  explicit the  assumptions that he or she takes for granted as a culture member (Hammersley  88 &  Atkinson, 1983). The researcher in developing sensitizing concepts  sought to  explicate the interactions, activities, and behavior of the participants. The  constant comparison of data, theory, and sensitizing concepts resulted  in the development of coding categories. Glaser and Strauss (1967) suggest that segments or slices of the data segments  of data  categories.  The  contradictions,  similarly  researcher  are taken  categorized then  in turn and compared  as well  re-examined  patterns, and themes.  It is an  with other  as its relevance  the  data  important  to other  for inconsistencies, technique  in field  research that the theory must arise from and "fit" the data (Bogdan & Biklen, 1982;  Burgess,  1984; Hammersley  &  Atkinson, 1983). The researcher reviewed  the data and categories to develop an inclusive abstraction true to the data to arrive at a theory of the social construction of the setting and participants. The  process  was one which required the researcher to inductive^ seek  other situations which were similar to the setting and data. Glaser and Strauss (1967) suggest comparisons  using  to other  literature social  and other  studies to develop  situations. For example, many  behaviors the participants exhibited are common waiting or bored. One such  senstivitj' and  of the stereotypic  in situations where people are  behavior was exhibited in one of the participant's  who was a 'circle walker'. This behavior if exhibited by people in an airport, while waiting for appointments,  or in prison may be viewed as a strategy to  cope with waiting or as a result of boredom. The question of whether sterotyped behavior  (eg. circle walking) was a result of boredom became salient. Another  participant sweater.  was Clothes  a 'sweater  picker' and often picked  straightening and sweater  picking  behavior in people who are nervous, bored, or waiting.  pills  of wool  is again  from her  not uncommon  89 The  researcher then  behavior of prisoners and  went to the literature to develop  awareness of  others coping with monotonj and boredom. The notion 7  of stereotypic behavior as an adaptive response to boredom was analysis. There was  an  inducted into the  then a systematic comparison of the inductive situations and  the researchers data and  then  check for inconsistencies and  a review  of the total data of the research to  other themes. This process led to the development  of typologies which fit into more general categories. The  model which was  against the data base. Again patterns, and The  developed  from  the typologies was  inclusiveness of data was  negative cases examined to determine  model needed to account  then  reviewed  checked, inconsistencies,  the efficacy of the model.  for data in different situations, times, activities,  and participants. The model arose from the data and was  not be imposed on it.  5. Data Analysis Techniques This section will review the development and process of data analysis. The emergent nature of the analytic abstractions throughout  the research project is  important  continuous  in field research. The  field journal, the  analysis of data was  observation protocols, and  substantive theory. The  comparison  utilizing the  to existing  formal or  resulting interpretation of the data is presented with a  case example from one of the participants to illustrate the process of analysis. The two  researcher reviewed  the informal observation protocols during the first  weeks in the setting. The  field journal entries for the informal observation  period noted on the first observation date, March 31,  1987;  look for emotion- or indicators of emotions (ie) smiles, laughter, tears etc. Watch to see if there is a pecking order. Watch for the mortification practices which might deny self to the participants.  90 An  analytic note in the field journal for April 2nd, 1987 read, The social distance factor, you should watch for more intently. Participant initiated interactions between each other seem minimal. At this stage in the data collection the focus of the journal entries  was  on, what to look for and categories  of behavior or patterns in the  participants. Other journal entries again mentioned the distance  maintained  between the participants, which furniture the participants sat in, and the overall pattern the  of movement, activity, and routine. A  detailed diagram of  both the group home and the day program was made on April 4th,  1987 which the researcher used to chart  movement, furniture usage, and  activity patterns (see Appendix D). The  April 8th, 1987 field journal  entry  summarized  the analytic  hunches of the first nine days of observations; -> -> -> -> -> -> ->  Emotion is noticeable in the participants. What's the meaning? What about a personality inventory for each person? Explore the idea of participant/participant boundaries Explore the idea of staff/participant boundaries Is there an overlap of boundaries? What about patterns of movement in the participants? Dominance/pecking order in the participants. The staff seem very objective, program oriented, lacking personal knowledge and interaction with 'the guys'. There doesn't seem to be a lot of 'fun'- 'games'- or development of rapport. It's more a routine of meals, meds, toiletting, grooming, in a technical routined way. 1  'the guys' was a short term used by the researcher to refer to the participants in the observations notes, the field journal, and in discusssions with the staff, the term applies to both men and women participants. 1  The  analytic hunches were consolidating  into a perspective  to view the  participants, staff, and actions observed in the setting. The April 9th, 1987 field journal entry theorized  at great length  on a social distance  theory and coding  91 category further  system. This theory observations. Social  participants was The noted  to as  1978; Lewis &  concept  did not  of physical  mature  space  due  between  to the  not a significant category for analysis. responses of the participants continued to be  formal protocols and  in the  field journal. A  'stereotypic behavior' (Baumeister, Baumeister,  all the protocols. The illustrate  sensitizing  distance in terms  emotional reactions and  in the  referred  and  1978;  type  Berkson,  of behavior 1967;  Hollis,  1982) was  very prevalent in all the participants in  example of May,  one of the participants, will be used to  the development of the  analytic  abstraction process  which  form  the  results section and interpretation of the data into theory. A  section of a formal observation of May  on April 22nd, 1987  reads in  the protocol: 6:45  7:03 7:45 p.2  27. 28. 29. 30. 37. 38. 17. 18.  May is gurring louder than I have ever heard her before. She goes into hysterical giggles as she sits in her usual position on the green chair. She sits there and laughs hysterically and claps her hands She stays seated guurrring and face fingering and occasionally laughing Lidia & Marian (staff) both give May a tickle. May laughs and giggles  The observation of May 2:30 p.2  19. 20. 21. 22.  on April 23, 1987  notes in the protocol;  May touches the outside of the cup but takes her hand away I assume from the steam etc. it is too hot to drink. May puts hand on it from time to time. May laughs and rocks and checks the coffee with her hand  The protocol of April 25, 1987 reads; p.l 1:10 2:00 2:25  27. 28. 38. 39. 40. 47.  May hyperextends- pounds her hands- makes loud noisescurls and uncurls-as if in pain. Then she strips She starts to laugh at apparently nothing, rocks more and more she becomes very loud to the level of shouting and claps her hands I go over and touch her ears, she smiles and giggles so I tickle  92 38. 21. 22. 23. 24.  p.2 3:25  The  her ears and she laughs and giggles May is on the trampoline she won't stand but sits and smiles and giggles and laughs as I bounce her on it. She is guurring and giggling and seems to love the motion. She moves so her movement makes the trampoline bounce her  above observations on May  abstraction  concerning  led the researcher to develop an analytic  emotions in the  PMR  and  their  relation  to stereotypic  behavior. After the data collection, during the data analysis stage, the researcher read in the literature concerning emotions and the  PMR;  One fact stands out--seldom, if ever, do professionals or direct-care workers with the PMR even bother to look for expression of underlying emotions in this retarded group. Since I first offered my seminar entitled "Profound Mental Retardation" in 1965, I have repeatedly inquired of graduate students, "Have you ever noticed a PMR blush?" and "Have you ever noticed a PMR sitting alone, in relative solitude, break into a braod grin or laugh?" For, if we had unequivocal affirmatives on both questions, we would have evidence that some among them have the capacity of self or other regard or that a thought crossed their mind and caused them to smile (Cleland, 1979, pp. 80-81).  The  observable emotional response, smile, laughter, giggles was  the protocols in a variety journal  had  mentioned  of contexts and  the  importance  in all the  of emotion.  noted in  participants. The field  During  the  analysis  the  researcher had read literature concerning a cognitive theory of emotions (Arnold, 1960;  Lazarus,  responses  was  1968;  Solomon,  beginning  to  1976). The  evolve  into  a  sensitizing coding  concept  typology  of  emotional  predicated  on  a  cognitive theory of emotion. The theory that emotional responses were the result of cognitive appraisal and was  indicative of internal thinking or, as Cleland stated 'that a thought had  crossed their mind' was into  an  developing the sensitizing concept of emotional  coding typology. The  researcher noted  that May  laughed  response  when alone,  when on the trampoline, and when tickled. Laughter, an emotional response  was  93 present in a number of contexts. An  analytic note on May  in the field journal  entry of April 27th, 1987 reads; May will go for a walk, she will bounce on the trampoline, she will laugh when she is on the trampoline and I believe, because I'm laughing too, it's because the trampoline is fun and it's 'funny' when 'solid' ground bounces you into the air. For a moment, as we laugh together, we both understand each other.  The and  as  analytic  use of emotional responses as an inference to an 'inner life' in May  'evidence' that abstraction  thought  of a  was  complex  occurring in May  inner life  gave  support  in the participants. The  to the analytic  abstraction of inside outside that the researcher had developed was  beginning to  triangulate  in  within  the  data.  Emotional  responses  were  present  all the  participants, in all contexts, the literature supported the concept of emotions as evidence of thoughts, and if there were thoughts then the concept of an 'inner life' was  theoretically very possible.  The  field journal  and  the  change in the intensity  and  degree  depending  on  the  emotional  informal and  formal protocols also  noted  a  of stereotypic behavior in the participants  response.  May,  when  she  was  'happy' (giggling,  laughing, smiling) exhibited a different rate of stereotypic behavior than when she was  'sad' (crying, frowning, hyperextending  approach responses  her body). In the 'common sense'  to observing behavior (Hammersley & and  Atkinson, 1983) May's emotional  stereotypic behaviors were congruent. The  concept of congruence  meant that the stereotypic behavior, for example, hyperextending  her  body to  show displeasure, her vocalizations sounded displeasure, and  her hand smacking,  all  supported  expressed  displeasure, unease,  upsetness.  The  data  that  the  stereotypic movement of the participant altered in degree and intensity and  was  "expressive" and congruent with the emotional response. May  exhibited qualitative  94 differences in her  vocal tone, body language, and  facial expression  which were  congruent to an interpretation of happy, sad, pleasure, displeasure. The in  the  researcher  participants  sought for theory which  became  to explicate the origins of the thoughts  emotions,  then  deprivation studies of Hebb, Doane, Scott, Bexton, and  emotional  reactions.  The  Heron (1951) with male  college students offered theory  to explain a rich internal mental life for normal  male  exposed  college  students  environment. The  when  to  a  monotonous, boring,  unstimulating  effects of a prolonged monotonous environment created emotional  reactions in the subjects; Not surprisingly, the subjects became markedly irritable as time went on and often expressed their irritation. Yet they also had spells when they were easily amused. In the interview afterward many of the subjects expressed surprise that their feelings could have oscillated so much, and that they could have behaved so childishly (Heron, 1957, p. 54). The  researcher, in the analysis inducted  state to explain the behavior of the  this childish oscillating emotional  participants. Further,  the  experiments of  Doane, Hebb et al noted that; Many of them, after long isolation, began to see "images." One man repeatedly saw a vision of a shaded rock by a tree; another kept on seeing pictures of babies and could not get rid them. Several subjects seemed to be having dreams while they were awake. Not until one of the experimenters himself went through the isolation experience for a long period did we realize the power and strangeness of the phenomenon (Heron, 1957, p. 54). The reviews on (1969) was researcher  evidence offered by the deprivation experiments including the literature sensory deprivation by viewed had  as  relevant  recorded. The  Suedfeld in  the  (1980), Schultz explication  participants' stereotypic  of  (1969) and  the  Zubeck  phenomenon  movement  and  the  emotional  behaviors were explainable. There is evidence to support that the deprivation and  95 *  monotony  of long  hallucinations  term  institutionalization  resulted  in an  inner  and patterns that were not explainable through  world  of  changes in the  external environment. The participants lived in a world of their own. It was an inner  world  of isolation  an  adaptation  to deprivation, understimulation, and  monotony. The  'unfathomable'  behavior  of the PMR  could  be  understood.  The  induction of deprivation experiments in 'normal' humans offered an explanation for behavior in the PMR,  who had been considered 'less human in some respects  than some non-human primates' (McAndrew & Edgerton, 1964, p. 318). Cleland's (1979) desire to understand  the strange behavior of the PMR  could be grounded  in the theory of the effects of deprivation on humans. The data  analytic abstraction of inside/outside had a 'goodness of Fit' to the  base  the researcher  had collected. The method  of constant  comparison  required the researcher to review the data base for negative cases, contradictions, inconsistencies, and exceptional events. The researcher was aware that the level of abstraction of the inside/outside theory could result in data not being included in the analysis. A complete reread of the data developed middle category between inside  and  category  outside. This  represented  participants  a  category middle  and the staff  was  position  interacted,  labeled  overlapping  between  inside  or experienced  boundaries.  and  This  outside. The  reciprocity  and mutual  inside 'culture' was the inner life that was expressed  through the  interest in the overlapping boundary category. The  emotional responses of the participants to the visions, patterns, or 'hallucinations' that  were  developed  the inner subjective lives as a result  of the participants. The inner life  of the institutional  experience; early  sundering  was  of the  96 parent child bond, non-stimulating childhood spent on large wards in cribs, with few  staff to interact, the participants had been exposed to long term monotony.  The  behavior of the participants was  not 'unsual' given the sensory deprivation  literature (Heron, 1957; Schultz, 1965; Suedfeld, 1980; Zubeck, 1969). The  outside 'culture' was  with parents, an use  based  on  experiences of interaction, remaining  interactive stimulating environment, and  of symbols. The  outside group were represented by  the development  the staff. The outside  group inferred that the participants' stereotypic behavior was little  adaptive  significance  (see  also  Baumeister,  stereotypic behavior as 'self stimulation.' The the  meaning  and  communications  boundary between the two to  of  the  an aberration with  1978). The  group.  Thus  inside  categorized  life as  to outside interaction over  on  lapping boundaries.  composed reciprocity between the two  the  These  part of the events,  understand  there  groups. The behavior of both groups was  the perception of the boundary that separated inside and  from  staff interpreted  outside group did not inside  and  was  a  in response  outside. The  shift  participants  was  actions, and  activities  groups and the participants 'came out' and  interacted with the staff and environment. The  example of May  will illustrate the over lapping boundary category.  The field journal entry of April 28th, 1987  reads in part,  May sees and hears different things than I do. She is often happy or sad with concommitant laughing/crying, hyperextending or hand clapping. This is her world. 'We' the staff are peripheral to her inner world and her emotions. 'We' are outsiders. We can and do enter into her world but as marginal members. Her world is one where she is in her own world, the boundary of her's gently touches our world. She sits on a chair tangential to us, but not far away. She lies on the couch tangential to the other clients, but not far awa}'.  The  protocols were then examined for boundary overlaps examples.  The  97 incident on the trampoline was  one noted event. The  relate boundary overlaps where May  following protocol excerpts  communicates her wants to the staff;  Protocol 5 p.2 13. Lidia has been rubbing May's back the whole time, when Lidia 14. stops May takes her hand and Lidia says 'Oh you want more, lets take 15. your sweater off, because it's hard on my hand' Lidia and May 16. co-operatively get the sweater off. Lidia continues to rub May's 17. back. April is picking at her sweater and occasionally puts her 18. fingers in her mouth with I guess the fuzz balls on them. Lidia 19. and Maria (both staff) discuss children they know, and tonight's 20. dinner. Maria leaves the room. May stands up and takes Lidia's 21. hand. Lidia says 'Where do you want to go?' They walk off 22. together in the direction of the kitchen. Protocol 24 p.2  10. 11. 12. 13. 14. 15. 16.  May returns to the chair and sits down. May picks up the spoon from the counter again, and this time gives it to Katie (a staff) Then May pulls on Katie's arm, Katie doesn't respond. May then hands her a plate, then a lid to a jar, May now tugs on Katie's arm again. Katie says to May 'Show me what you want' May takes her to the tea kettle and Katie plugs the kettle in and May sits down.  41. 42. 43. 44. 45.  Lynn (a staff) sits on the table right next to May. May takes Lynn's arm and moves it across her. Lynn says 'What do you want May?' May keeps tugging on her arm. Lynn gives her a back rub. May quietens down and appears to relax. May is so much quieter now.  39. 40. 41. 42. 43. 44.  May gets up and takes a yellow cup from the cup board. Sal says 'Put the cup back May.' May puts the cup back on the shelf. May now goes to the kitchen counter and leans on it with her elbows. May then goes back and gets the cup again. Sal again asks her to put the cup back and May returns the cup. May then goes to her green chair and sits down.  Protocol 26 p.l  Protocol 28 p.l  These events and  actions were coded  and  or examples of over lapping  98 boundaries directed  between the inside and  outside. The  towards objects, people, and  requested  actions of the participant were something. The  participant  had  entered the world of interaction and meaning through physical gesturing and the use of concrete objects as a symbol for requesting coffee. The excerpts given are not inclusive but illustrative  of the actions used  for May  in coding boundary  overlaps.  6.  Summary This section has  PMR.  The  applied the field research approach to a study  social unit for the study has been described and the research consent  and confidentiality reviewed. The example of May  was  continuous process of analysis in field research and analytic abstractions. The over  laps  of the  was  presented  presented to illustrate the as a process in developing  analytic abstractions of; inside, outside, and with  examples  from  the  observation  boundary  protocols. The  following chapter will describe the setting, the participants, and the group's social structure.  CHAPTER IV. DESCRIPTION This chapter will describe the physical setting of the participants' group home, day program, and their participants,  their  physical  as well  presented from the observation the  life  Finally  of each  daily  activity as their  schedule. A personal  description  of the  characteristics, will be  protocols and the field journal. A typical day in  participant is given  the participants will  describing  be discussed  using  the behaviors  and activities.  the analytic abstractions of;  inside, outside, and boundary overlaps.  A. DESCRIPTION OF THE PHYSICAL SETTING The  group home and day program for the participants was operated on a  twenty five acre site owned by Society X. The site provides vocational and day programs  for approximately  twenty-four mentally  100 mentally  work shop, three  central administration  people  and residences for  retarded adults. The site contains a system of roads, lawns,  street lights, and paths that connect four barn, wood  retarded  small  large homes, five green houses, a  homes, a recreation hall, chicken  house,  building for the Society, and open ditches on three sides  which form the property line. The Society opened this site in 1971. This site is characterized by it's rural seclusion. It is situated approximately half way down a  dead  end street. It is twelve kilometers  kilometers  from  the town  center  and three  to a main road and bus service. There are several other farms on  this street. There are four identical large wood framed tar and gravel roofed buildings that dominate the site. These four buildings were designed as group homes to house ten mildly mentally  handicapped people per home with  99  a set of house  100  parents. The  house parents had  change in the philosophy mildly mentally based  and  a separate suite in each of the group homes. A administration of the Society had  handicapped residents being  group homes of four  moved to smaller  to six residents. Two  vacant as a result of this change. These two year. It was PMR  The The  more community  of these homes were left  homes remained empty for about a  these vacant homes that were utilized for the deinstitutionalized  participants. One  building. The  resulted in the  is their  group home the  other  is their day  program  buildings are approximately fifteen years old.  one building used as the group home has  renovations  included  panelling the  walls  had  to prevent  the interior renovated. the  participants from  smashing holes through them. Glass windows were replaced with impact resistant glass to prevent the participants from breaking them. The from the dining room and observe the  kitchen was  sealed off  high a impact glass window installed. The  staff can  participants in the  interior of each home has large, cavernous, and  living and  dining room from  ten private bedrooms, one  austerely furnished  the kitchen.  house parent suite and  The a  living room/dining room area. Overall  the interior atmosphere is spartan, drab, and unimaginative. Locks have been installed on every door in both buildings. The keys for the locks and  control which rooms the participants may  little furniture there is has floor. The  small two  been either built on  staff have  enter. What  to the wall or bolted to the  seat couches bolted to the floor are made of high density  indestructible polyeurethane. These couches accompanied the participants from the institution. The  built in benches on the walls have cushions covered in a vinyl  material that is waterproof. A  large built in book case dominates one  the front room. There are no books in this book case and  only a few  wall of toys  and  101 puzzles.  There  are three  artificial silk plants  number of prints and posters  in the front room. The limited  that adorn the walls are protected  by plexiglass  that is affixed over the picture by screws which go directly into the wall. This large bleak cavernous approximately 6,000 square foot house is 'home' for the five participants. The  day program  building, situated  approximately  thirty  feet away is  identical, only it has not been renovated. This building has tiles missing  from  the floor, holes in the walls, and is badly in need of repair. The roof leaks, the toilets were, often during The  the observation  period, either plugged or not working.  furniture in this house is a delapitated collection of legless couches, broken  chairs, and old school  tables. The participants push this furniture around the  front room. The kitchen  in this house has been similarly sealed  dining room with the observation  off from the  window installed. There are no pictures on the  wall or plants in this building. The house, overall, appears to be an abandoned derelict building. Janitors  clean  both  homes  urine, and pinesol are prevalent  daily but the unmistakable  unmistakably  of feces,  in both homes despite this daily routine. The  shared yard is maintained by a landscaping are  smell  drab, unstimulating,  crew on a weekly basis. The homes  and utilitarian  environments  which lack  character and personality. A  fence surrounds the two houses and a tree lined path connect the two  programs. The participants move from the group home to the day program and back  Monday  to Friday  each  week.  The  common  yard  is used  by the  participants seven da}s a week. This isolated rural site, a place clearly for the r  mentally retarded,  is the community  placement for the deinstitutionalized PMR  102 participants.  B. THE DAILY ACTIVITY SCHEDULE The daily schedule for the participants was structured and routinized. Each day  there was  a format  of activities  which  between the group home and day program  was  followed  and co-ordinated  staff. An overview of this schedule is  presented in Table 7. The schedule of activities will be described in the section titled "A Typical Day." In order to typify each day, one activity in the day program  will  be described  for each  participant  which  best  exemplified the  behaviour of that participant.  Table 7: Daily Schedule Time 6:30-7:30 7:30-8:30 8:30-9:00 9:00-10:00 10:00-10:40 10:40-11:10 10:10-11:50 11:50-1:00 1:00-1:40 1:40-2:10 2:10-2:30 2:30-3:00 3:00-4:00 4:00-5:30 5:30-6:30 6:30-8:00 8:00-9:00  Activity Wake-up and grooming Breakfast and medications Toiletting and walk to day program Circle activity Arts and crafts Coffee break Communications Lunch Music Coffee break Vocational Training Clean up and return to group home Medications and tea time Free time Dinner time Free time, walks, and bathing Medications, snack, bed  103 C.  FIRST  IMPRESSIONS  The  first impression on entering the setting is one of chaotic, patternless,  pointless, and bizzare behavior. The everyday  world  and  entered  an  researcher felt that he had left the normal  island  of insanity. One  protocol records this  observation of a scene on entering the participants' group home;  Protocol* 47 page 1 1. May is naked from the waist down lying on the bench couch. 2. There are two large B.M.s on the floor, one in the dining room 3. one in the front room. Dan is walking on his tip toes with one 4. hand holding his penis while the other is waving in the air. 5. He is dressed in red shorts, a blue top and bare feet. Dan sits 6. on the window seats waves his hands in the air then rubs his 7. eyes folds the cushion around himself and bites one hand while 8. picking his ear with the other hand. May starts to hyper9. extend her body, while smashing one hand into the other and 10. gurring louder and louder. May begins to cry and jumps up 11. and goes running into the kitchen on tip toes gurring and 12. smashing her hands together. Dan makes motions in the air 13. as if he were playing an imaginary guitar. Tim circle walks 14. around and around the front room making small ooh noises 15. occasionally extending one arm. April comes in on tip toes 16.  holding two sweaters under her arm The  assault on  the  senses  of the  behavior seemed beyond comprehension. A by  the difference in behavior  setting. The  to the  vocalizing eeaahheeaahh smell, the  nudity  and,  the  unusual  casual observer cannot but be moved  ordinary everyday  world  outside of this  initial observations of the researcher recorded the actions, sounds,  and sights of the participants. The field journal recorded the researcher's struggle to  develop  sensitizing concepts  to provide categories of behavior  to develop  understanding of the participants. The field journal entrj' of April 4, 1987  reads;  Prepare a file on each participant from the observations include; how they interact with staff and other participants, likes, dislikes, descriptions, things they do, stereotyped behaviors,  an  104 patterns, any  personality characteristics they have.  These analytic notes, to observe the obvious, became the concepts for the  researcher to code similarity of pattern,  participants. A  routine,  and  actions  later entry in the field journal of April 17,  for each of the  participants' activities, likes, patterns,  1987  and  there  being  participants was protocols was  a  purpose  and  intentionality  characteristics  becoming acquainted to the individuals and strangeness  observation of recurring  of  the  actions  setting in the  faded  to  participants' behavior. As  the  and  section will describe each of the participants and  Age:  Dan 21 years  Height: 6'  2"  Weight: 153 lbs.  the  the  researcher  researcher.  The  apparent and  the  a nascent start  progressed  and  the  the participants, the  predictable. The  following  develop a composite profile  behaviors from the protocols and  D. INDIVIDUAL PARTICIPANT DESCRIPTIONS  Participant One:  time  setting and  behaviors became more familiar and  of their everyday actions and  in  pointless. There was  researcher became more familar with the  of  observation  behaviors. The  participants was  not chaotic and  actions  actions  'sense'  the setting.  pattern of actions was understanding  the  gradually being observed by the researcher. The  recorded similar activities, actions, and  The  in  the  recorded  that were repeated in different observations for each participant. The of  by  field journal.  105  a) Physical Description Dan  is a tall, slight curly haired, native Indian male. He  appearance. He  has  large brown eyes and  is attractive in  a pleasant smile. Dan  walks on his  tip toes. Both of his hands are calloused near the wrists where he bites himself. He  has  all of his teeth. Dan,  have any  physical deformity  unlike many descriptions of the PMR,  does not  or grotesque malformation of his body. Overall  is a handsome, tall, dark haired, male in his early twenties. He  Dan  is the youngest  participant in the sample group. b) A Typical Day Dan received one  in the Life of Dan  was  one  to one  He Dan  was  am.  participants woken up ASW  and  was  in the  dressed  smiled and  put  one  window. He  morning.  and  He  groomed by  the last person to come into the dining room. It was  Dan  came into the front room and  twisted his fingers through her hair. June screamed and sat on the window seat. He  (staff) came over to him up,  last  attention from an  one of the staff. Dan approximately 8:00  of the  and  stood beside June. pushed him  away.  waved his arms in the air. Celia  put his runners on him. Once Celia left, Dan  hand down the . back of his pants, and 'hand waved' at the window, then turned,  came to the  got  observation  smiling, with his hand  still down his pants and returned to the window seat. Breakfast  was  served  or respond to the call. Dan  and was  Dan  was  called to the table. He  didn't move  brought to the breakfast table by  Celia.  She  tried to have him  sit down but he went to the food cart. Celia used a piece of  toast to lure him  away from the cart and  down a full glass of juice. Celia had  him  seated him pick up  at the table. Dan  his spoon by  gulped  using a hand  106 over hand technique. This method of training (hand over hand) required the staff to use their hands over the participant's hands and, in essence, make the person perform the motion that was desired by the staff. Dan ate all his cereal. Celia left to assist Tim. Dan tried to steal June's cereal but Katie (staff) came over and  through hand over hand had him sign food. Katie gave another helping of  cereal to Dan. She went into the kitchen. Dan tried to steal May's juice but Celia interceded and gave him another glass. Katie brought out waffles but Dan did not eat them nor did he look at them. Dan  stayed seated at the table drumming the table top with both hands.  He was the last one at the table. Celia came to the table with asked Dan to stand  a coat and  up. Dan got up, Celia saw he had been incontinent, his  pants were soaking wet. She took him to the bathroom, had him strip, wiped him,  and dressed  him in clean clothes. Dan joined the rest of the participants  who were waiting at the door. The group was led by Katie to the day program. Katie worked at the day program and came on shift an hour before the day program starts to assist the participants to dress and have breakfast. The  next major event of the day was the day program. Dan arrived at  the day program at 9:00 am. He entered  with the other four participants and  went into the front room. Dan was often left out of the activities in the dayprogram. A typical time for Dan in the day program started with him in the morning 'circle exercise' beside  Larry  (staff). Dan did not appear interested in  the day program activities. The 'circle exercise' started and Dan reached out and grabbed Larry's hair. Larry disengaged Dan's fingers from his hair. Dan tried to grab Larry but Larry held his hand and said 'No Dan.' Larry, hand over hand, had  Dan roll a ball across the circle. Dan did not look at Larry or the ball.  107  Dan  was rocking rhythmically. Larry, hand over hand, had Dan push balls. Dan  continued rhythmically rocking. The circle exercise ended and Dan stayed seated on the floor. Tim (PMR) came up behind Dan and sat down and pushed Dan. The pushing was ignored by Dan. Tim pushed harder and Dan turned and gently hugged Tim. But Tim kept on pushing  Dan. Larry came over  and had Tim follow him out of the  room. Dan stayed seated and occasionally did a 'rock star' stereotypic movement. This stereotypic movement looked as if Dan were playing an imaginary guitar while he shook his head. Tim Dan  returned ten minutes later and started to push Dan again. This time  vocalized a small 'eee!' sound and put his hand on Tim's shoulder. Tim  stopped pushing and they sat side by side. Larry came over and had Tim follow him  again. Tea was being served and Dan was the only person who was not  invited for tea. Dan sat and performed  stereotypic behavior, he rocked back and  forth, waved his hands, and occasionally did a 'rock star' movement. Tim  returned after tea and again started to push Dan. This time Tim  pushed Dan with his feet. Dan ignored Tim, but in order to remain seated Dan had  to adjust himself to the force of Tim pushing  minutes, got up and moved to another  on him. Dan, after five  seat. Dan sat and did his 'rock star'  stereotype. Larry came and had Tim follow him to the bathroom. Dan put his hand into his pants and moved his hand up and down over his penis. Five minutes later Dan got up, took his hand out of his pants and sat cross legged in front of the stereo set. Dan put his ear right on the speaker, a rock song was playing, Dan rocked  in time  to the music. He was the only  person in the front room. He rocked and swayed to the music. He turned the  108 volume up put  and  his hand  changed the station. Dan back into  sat back down on the window seat,  his pants, and  layed in the sun  that  was  coming  through the window. The rest of the time spent at the day program was  similar  for Dan. The next significant event for Dan  was  returning to the group home. The  day program ended at 3:00 and the participants walked back to the group home. A  typical  afternoon for Dan  is illustrated  by  the  following  record of Dan's  behavior and actions before dinner, at dinner, and going to bed. Dan, on return from the day program, saw her and  hugged her. Dan  moved back but Dan  was  Maria (staff). He  smiling as he pulled her close to him.  took her hand and vocalized an 'eeee.' He  again. Maria managed to leave the embrace and staff) said to Maria 'You Maria agreed and took Dan Maria Dan  sat on  toilet Dan  and  Dan  Maria  then hugged her  followed her. Glynda (a  May  and  I'll take June and  zipper and  had  him  April.'  to the toilet.  undid Dan's belt and the toilet and  went up to  urinated. Dan  stood up  pull his pants down.  with his pants down and  hugged Maria. She told him to pull up his pants but he kept hugging her. Dan had  a big smile on his face. Dan  saw  his face in the bathroom mirror and  waved at himself. Maria got out of the embrace and your pants up.' This time Dan  again said to Dan  'pull  pulled up his pants. Maria buttoned and zippered  them up. Dan  followed Maria to the front room. He  sat on it, cross legged. He  went to the window seat and  did a 'rock star.' Later, he put one hand down the  front of his pants and rubbed  himself. He  turned and la3 on his stomach and r  rubbed his penis against the cushion, moving backwards and forwards.  109  Later, Dan got up and circle walked  with a spinning motion. He waved  his hand at his reflection in the observation window. Maria and Glynda came into  the dining room  and Dan  immediately  went to Maria  and hugged her.  Maria managed to leave the embrace and he followed her into the front room. Maria took April to the toilet and Dan returned to the window seat. Dan's next activity was  dinner. Dan  was  a picky eater, his two food  interests were juice and bread. He was led to the table by a staff member. Dan sat at the table and crossed his legs with his feet on the bench. Glynda (staff) removed Dan's juice and said 'Put your feet down.' Dan put his feet on the floor and Glynda gave Dan the juice. He drank the full glass in one gulp. Dan reached for a piece of bread and ate it very quickly. Dan looked at the dinner on his plate but did not eat anything. Glynda mixed his potatoes and meat together. She, hand over hand, had Dan use his fork to eat. Dan, after tasting the food, ate everything on his plate. Once his plate was empty Dan got up and went to the food cart. The juice container and bread were on the cart. Dan grabbed two pieces of bread and quickly got both pieces into his mouth. Glynda ran over to him and removed some bread from his mouth. She reseated him at the table. Glynda  gave him another glass of  juice. Dan drank the juice in one gulp. He placed the glass on the table and reached over to June's glass. Glynda took Dan's wrist to stop him from stealing June's juice. Dan stood up, took Glynda by the arm, and led her to the food cart. Dan placed her hand on the juice pitcher. Glynda took the juice container off the cart, reseated Dan, and poured  him another glass of juice. Dan gulped  the juice down, got up, and went into the front room.  110  After dinner was attempted and Dan He was  unplanned  activity time  to open the door to leave the house. A  in the group  home.  Dan  staff person opened the door  stepped out onto the porch. Dan  loved to go for walks around the site.  especially loved the greenhouses and  would often led the staff there. Dan  allowed  into  greenhouses Dan Dan  an  the  greenhouses  walked up  and  by  the  staff  member.  down the aisles, through  didn't touch the plants or flowers. He  all the  inside  the  greenhouses.  seemed content to just explore the  houses and look at the plants. When the staff led Dan he resisted going up the steps. Dan  Once  appeared  back to the group home  as if the walk was  not sufficient  and tried to go away from the home. The staff managed to get him back inside the group home. Once inside, Dan  sat alone at the window seat and  groin against the cushion. He  again rubbed his  waved his hand at the reflection of himself in the  window, exhibited stereotypic movement through a repetitive circle walk. Dan incontinent and Maria took him  to the bathroom and helped him  off. Maria removed his shirt, shoes, and socks. Dan  was  take his pants  smiled at her and  grabbed  her, rubbing his body against hers. Maria had him take a shower and she towel dried him as he smiled at her. They went down to his bed room, Maria leading and Dan, naked, followed her. Once in his bedroom, Dan  lay back on  head, and stretched out smiling at her. It was attitude in Dan.  Maria had  Dan  stand up  stretched out on his bed. He left the room. Dan  a 'seductive' mood, position, and  and  very little to help her to clothe himself. He  the bed, his arms behind his  get into his pajamas. Dan did  stared at her smiling and  reached for her but Maria said 'No  Dan.'  again Maria  lay down with a wide grin on his face, at times he laughed  Ill out loud. Dan  did his 'rock star' stereotyped  movement. He  rolled  over and  rubbed his groin on the mattress. Later he rolled onto his back. He had a smile on his face. He  put both his hands down the front of his pajamas and rubbed  up and down. He  stopped and took one hand out. He  mattress with one hand. Then  giggled and tapped the  he lay on his stomach  again and 'humped' the  mattress. Then he rolled onto his back and put a hand down his pajamas and rubbed up and down very quickly. Then he was  quiet and still. He  pulled the  covers up around him. Dan closed his eyes and slept. The time was nine thirty. A  weekend  day  often  meant  Dan  appeared to love visits to the park. Dan the park unescorted. Dan  would  be  taken  to a  park.  Dan  got out of the van and walked into  went straight to the swings where he  sat on the  swing and pumped his legs and swung back and forth. He stopped the swing by placing his feet on the ground as brakes. He  turned around and around on the  swings until the chains were wrapped tightly. Dan  removed his feet from the  ground and the swing spun him around. Dan left the swings and wandered to a park building where he tried  to open  the doors. The  doors were locked. Dan  walked around the park not going near the staff or other participants. One of the staff noticed Dan  wandering  out of the park and  led him  back, by the  hand, to the swing. Dan  swung again. He got up to walk around but the staff  led him to the van. Dan  got into the van unassisted by the staff and sat with  a smile. Back at the group home Dan would try to walk to the greenhouses but the staff led him by the hand up the steps and into the house. Finally, back in the front room Dan went straight to the window seat and laid on it. Soon, his hand  was  in his pants. The  weeknight routine.  evening  routine  would  be  the  same  as the  112  Participant Two: June Age: 38 years Height: 5' 8" Weight: 140 lbs. a) Physical Description  June's hair is almost white, her piercing ice blue eyes are striking, and her skin is almost the colour of paper. These characteristics are typical of a person  with  PKU  (phenylketonuria),  which  is the  cause  of June's  mental  retardation. June's size is also striking, she is large for a female. The hair at the back  of June's head  is sparse and  matted  from  the continual rhythmic  rolling of her head on the floor and on chair backs. June's hands are blistered and scarred from her biting them. Her face is scarred from stitches where she has hit her head into walls, usually putting holes through them. Her body, while stocky and strong, has a protuding stomach, and her pants always appear ready to fall down. June stands out as unusual in physical appearance. Overall, her physical presence is unusual.  b) A Typical Day in the Life Of June June was up early in the morning. The only other participant awake and dressed before June was  May.  One  staff member assisted June with dressing.  June then came into the front room. A  usual morning for June is described by  the following composite of her activities made from the observation protocols. June was  seated on the green couch in the front room. She was holding  a runner in each hand while she rocked from side to side and rubbed her head against the back of the sofa. June heard the kitchen door open and quickly ran into the kitchen and sat in one of the chairs. She was still holding her runners.  113 She held them out to Celia (staff) who  ignored her. June dropped the runners  and brought her hands beside her head and rolled her head from side to side, 'finger staring' alternately at one hand then the other. This stereotypic movement was specific to June. She held her hands with her fingers folded on the palms of either hand, her thumbs bent inward, and rhythmically stared at each hand, for a few seconds. June frequently performed this behavior for extended periods of time. Celia started to prepare breakfast and June looked and  stared  at her.  Celia started to load the breakfast onto a cart to wheel into the dining room. Suddenly, June jumped up and tried to push the cart out before it was loaded. Celia moved to stop June, but she screamed  fully  and resisted. Sal (staff)  came into the kitchen, went to the cupboard, got the place mats, and handed them  to June. June  took the place mats, rushed into  the dining  room  and  dropped them on the dining table. June turned around and ran back into the kitchen. June returned to the cart, which was now  fully loaded.  June pushed the cart and Celia did not stop her this time. The cart hit the kitchen door frame and wouldn't move. June screamed and screamed, she hit her head with her hand. The force of the blows was Sal  tried  to console her and  said  it was  very powerful. Celia and  'o.k.' but June  screamed  and hit  herself. Celia 'lured' her to the table with a piece of toast. June sat down at her place and ate the toast. June was given her cereal in a training bowl. She ate from the bowl with a spoon. June tried to steal May's cereal, but Celia gave June more in her own  bowl. June had more toast given to her by Sal.  June drank some of her juice, and started to rhythmically head rock and finger stare. Tea was  given to June once her cereal and toast were finished. June  114 drank  the tea down in gulps and  got up  and  ran into the front room. She  picked up her runners and came back to the dining room and shoved them at Celia, who  said 'Not now.' June kept pushing the runners at Celia who  no, as she was room  and  told her  helping Tim. June dropped the runners and ran into the front  sat on  the green  couch  with  her feet tucked up  rhythmical rocking and finger staring. Celia finished with Tim  and  began her  and went over to  June. Celia put June's runners on her. June left for the day program with the other participants. A  typical day  for June at the day  rock' most of the time. Any  activity that was  done 'hand over hand.' There was program for June. This was June. Larry was  appeared  program was  any  to 'finger stare and  planned by the staff had to be  an important and  special time at the day  activity or event that Larry  (staff) did with  to be very special to June and her behavior for Larry  different than with the other staff members. An  illustration is provided in  the following excerpt from protocol #29; 47. 48.  Larry hand over hand has June roll a ball. She looks at him 'pleadingly' but he does not give her a candy reward. Larry  page 2 1. says 'roll the ball' and June rolls a ball. Larry says 'Good Girl' 2.  June but still does not give her the candy reward. Contrast Larry's success in having June participate in an activity to a  much more frequent response in the following illustration with June and Katie (staff) in the same program taken from protocol #30; page 48. 49. 50.  1 Katie places a domino in the middle of the table and asks June to go first and match it with one of hers. June finger stares and does not respond to Katie. So Katie hand over hand  115 page 1. 2. 6. 7. 8. 9.  10. 24. 25. 26. 27. 28.  2 has June push a domino next to the First one and gives June a candy from the bowl. June makes 'crying' sounds It is June's 'turn' again, and this time she resists much more vehemently. She locks her arms so Katie can't move them. When Katie offers her candy to unlock her arms June does not look up or respond to the candy. June makes little whimpering noises like she's ready to cry The next time Katie puts the candy on the domino but June does not even look up from her finger staring, June now pushes her chair away from the table and on her next turn will not even move her chair to the table. June never for the remainder of the exercise comes back to the table or participates All  how  of the staff comment on June's special relationship with Larry and  Larry could have June participate in activities no other staff could achieve  with her. June would stay at the program from nine o'clock until three o'clock. June's next major day change occurred when she returned from the day program  to the group home. June loved to be in the kitchen. She  sat in a  chair, stared at her fingers and nodded her head rhythmically from side to side. Most days June would act upset and 'disconsolate.' Often she threw a temper tantrum regardless of staff intervention, attempts to pacify her, or engage her in activities. A typical disconsolate period for June is illustrated by protocol #32; page 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14.  1 June is in the dining room screaming. She runs out onto the patio and circles coming back in the house screaming. Now June sits on the dining room bench and lets out another scream. She gets up and runs to the TV couch, May is lying there, but gets up and goes to the other couch when she sees June at the couch. June lies on the TV couch and screams. Maria (staff) says 'I'm going to the kitchen do you want to come?' June gets up and follows Maria to the kitchen making little whimpering noises behind her. They are in the kitchen. There is a knock on the front door. Maria goes to answer it and June runs out of the kitchen making crying noises. June sees the office door is open and goes into the office and lies on a couch there. She finger stares and rhythmically nods her head. She stops head nodding and looks at one hand, stares at it. Then inexplicably she starts to laugh  116 Later in this protocol June again became restless and  disconsolate. The  scene settled down as the staff started to prepare dinner and  like most nights  June sat on  the dining table and  stared in through  the window watching  staff make dinner. June sat on the table night after night watching  the  the dinner  being prepared, rocking and finger staring. June had a healthy appetite and most nights ate two spoon and  or three helpings of dinner. June ate on a training plate with a  occasionally would use her left hand to grab the food in her hand  and shove it in her mouth. After dinner for June was  much like before dinner. Often June wandered  around the house disconsolate. The  staff tried to find ways to settle and  her. Certain techniques appeared to work on some occasions and  not on others.  There were three main techniques which will be illustrated below. The a puzzle, the second was  clipping her nails, and  the third was  calm  first  was  allowing June  into restricted rooms (ie. the office or kitchen). The  puzzle was  a child's 8" by 6" frame puzzle of animals. June would  look for the puzzle. If she couldn't find the puzzle she took staff members by the hand to places the puzzle was rung her hands. If the puzzle was  commonly kept, made 'oo, oo' noises, and found she took the puzzle, ran into the front  room, and laid on the couch. June held the puzzle, rocked and moved her head from side to side in a rhythmic movement. June loved to have a finger nail clipped by cutters. The  the staff with finger nail  nail clippers were kept in a cupboard in the kitchen. June led a  staff member there and  put their hand on the cupboard door. If the finger nail  clippers were missing the staff would use another item, often a BIC  lighter and  pretend to cut one of her nails. After this June stared at the staff member and  117  grimaced.  She returned to the couch or chair, tucked her feet up, and 'finger  stared' rhythmically rocking herself. The  third method was to allow June into a restricted room where she  would sit or lie and 'finger stare' and rock on a couch or chair. Often June screamed and hit herself as the staff went through attempting to console her. On days when June was  this repetoire of methods  very  disconsolate she abused  herself. She bit her hands, hit the wall with her head, or hit the staff. June, was put in her bedroom when nothing consoled her. The bedroom had all the walls panelled so she could not put holes through the wall. She hit the walls and gradually settled down. At this point June laid on her bed and rocked  rythmically.  Each  night  before  bed time  for June  entailed  bathing,  grooming, and getting into her night gown. The staff helped her undress, wash, brush her teeth, and dress her in pajamas. June presented no problem in going to bed. She followed the staff to her room, got into her bed and sleep came almost immediately to her. A typical weekend day for June was not dissimilar from a weekday. June rhythmically rocked and finger stared. Often she went into the yard and laid in the sun. June rocked and finger stared for most of the day. From time to time she  got up, screamed  and grabbed a staff member's hand. The staff led by  June came back into the house where June went to the couch, office, or kitchen. Once June found an area she wanted, she laid down and the screams changed as she started her rhythmic her face. Evenings  patterned movement. Inexplicably, a smile came to  in the group home followed the same routine as the week  day evenings. June went to bed at approximately nine o'clock and slept until the morning.  Participant Three: Age:  118  May  37 years  Height: 5'  4"  Weight 105 lbs a) Physical Description May face. The  is slight person with  a very sore looking red rash that covers  her  rash is the result of tuberoschlorsis. These polyps that cover her face  are also present in her brain, growing on the brain cells. It is the cause of her retardation. The  rash  on  her  grotesque but pitiful look. May  face  is unpleasant  always walks on  constantly going in her mouth, nose, and  to  her  view  and  gives  tip toes with  her  a  her hands  over her face, while she vocalizes a  sound similar to a small motor, grrgrr, hour after hour. May,  overall, appears  small, unusual, and somewhat pitiful to the observer.  b) A Typical Day May staff and  in the Life Of  seldomly slept during the night. She was  her  hands  coprophagy. She  over  was  with the over night  the first person to be  loved to sit in the kitchen on a chair and her  face.  If  left  would eat her feces and  night staff always allowed her. May,  stayed up  always awake in the morning. She  washed and dressed. May rub  May  May  unattended  May  would  'ggrrr' and engage  pick her anus until it bled. The  in  over  to stay in the kitchen where the3 could watch r  if the staff left out a coffee cup or ashtray, would drink the coffee  and eat the ashes and cigarette butts out of the ashtray. May  also exhibited the  behavior known as pica, (eating of non-nutritional items, e.g., cigarette butts). May  was  a gentle person and every morning was  chair drinking a cup of tea and  in the kitchen in 'her'  grring, face fingering, and  rocking rhythmically.  119  Another participant entered May  the kitchen, touched May  on the top of the head.  got up and moved to another chair as the participant sat in her chair.  May's grrs often changed in pitch. She sounded sad, cried, and hit the fist of her  right hand into her left. May's rocking  increased  in speed and intensity.  Often she jumped up and went into the front room. There she laid on the long bench couch grring. The grrs and tears changed  to laughter  for no apparent  reason. May came to the dining table when the staff called her name and sat at her  place. She ggrred  and rocked  breakfast off a regular plate with  while  she ate her breakfast. May  ate her  a fork. The other participants seated  her stole the food from her plate while  beside  she ate. The theft never appeared to  bother May. After breakfast May was let into the kitchen by the staff where she sat in her chair, grred, 'face fingered,' and rocked  until it was time to go to the  day program. May  went immediately  to the kitchen door on her arrival  program. One of the staff let her into the kitchen. May  at the day  sat in a chair in the  kitchen and performed her pattern of stereotypic movement. May checked out all the coffee cups, ashtrays and anything that might be edible. The staff said 'Sit down  May' and she sat down  coffee, noticably changed  with  a grr. May, when  her behavior.  she drank the staffs'  The stereotypic motion  became faster,  more intense, and often resulted in tears and emotional signs of anguish. The caffeine from the coffee appeared to affect May in this manner. May  participated in the small  group sessions  with  total disinterest and  continual stereotypic movement. The staff used hand over hand with May so the  120  task  was  accomplished  engaged in by the room. The  by  her.  May  the staff. Often  never  looked  at  a  task  she jumped up, grrred, and  staff said 'Come back and sit down May'  that she  was  attempted to leave  and May  sat down and  waited grring, rocking, and face fingering. The next event  return to the group home at the end in May's life. May  kitchen door to be let in. She door on her hands and let her  in and  member by  she  the  group  sat in her  rocking rhythmically. A  chair in the kitchen. Often  staff said to her 'Do  away. Occasionally May  her  participant  by  the  she  staff member took a staff  put their hand on  you want some tea May?' Sometimes they  touched the cup. If it was  hot she took her hand  retouched the cup and finally drank the tea.  moved from the kitchen to the bench couch in the front room where  she laid stretched out grring and face fingering. Often Dan touched  waited  the  waited crouched on the floor outside the kitchen  knees grring and  made her a cup of tea. May  program was  home and  the hand, led them to the kitchen counter, and  the kettle. The  May  entered  of the day  head. May took her  got  spot  on  fingered until dinner. She  up the  and  or Tim  came by  went to another couch while  bench  couch. May  the  grred, rocked, and  occasionally napped. There was  and other face  no sign of stereotyped  movement during her naps. May  was  called from the kitchen to the dining table for dinner. She  at her place. May's dinner was participants on  either side of her  stereotypic movement and May  served on a plate and  went back to her  she ate with a fork. The  stole food from her  sounds continued chair in the  sat  which she  ignored.  The  throughout the dinner. After dinner  kitchen  and  performed her stereotypic patterns. Occasionally May  sat in it. She  grred  and  took the staff to the kettle,  121 or ate  suddenly got up and drained one of the staffs' coffee cups. May  frequently  from an ashtray someone had left out. May  the  stayed seated in the kitchen or moved to the front room to lay on  couch. Her ever present search for coffee or tea, or ashtrays was  evident and if cups or ashtrays were left unattended May  always  would take advantage  and drink or eat whatever was available. May May  would  loved to have her back rubbed by a staff member. At these times cease the stereotyped  motion  When the person stopped massaging May on her back. May  when  ggring  and  enjoy the massage.  she would take their hand and put it  appeared to possess an outstanding quality to May  receptive language. May staff  and  would  called, pulled  up  'understand' verbal directions and her  pants  on  verbal  was her  came to the  prompt, or went  to the  bathroom when told to do so. May  never went to bed. She stayed in the kitchen and ggrred and face  fingered all night. She occasionally napped. The last sound heard as the ASWs left the house each night was  the night staff in the kitchen with May  ggrring  in the background at midnight. May's weekend was on outings. May She  not disimilar to the weekdays except for May  went to the park and ggrred as she walked on her tip toes.  sat down and ate grass when the staff was  staff tickled her and she laughed. May on  the  stereo  system  meant  May's  not watching her. Often the  responded to music. Rock and roll music stereotypic  movements  pronounced. During classical music, especially flute music, May the  going  point of sleep. May  were  fast  and  slowed down to  sometimes changed from sounds of anguish to laughter,  which was infectious and the staff laughed too because of May's mirth.  122  Participant Four: Tim Age: 36 years Height: 5' 8" Weight: 153 lbs. a) Physical Description Tim's ears  are badly  cauliflowered. His eyesbrows and chin are badly  scarred. These scars were apparently the result of his time  spent on a back  ward where the other 'inmates' and Tim fought. Tim had blue eyes and sandy brown hair. He was muscular and seemed unaware of his surroundings. There was a quality of aloofness and of Tim not attending to changes in his physical surroundings. Tim spent hours walking in circular patterns with his eyes opening from  time  to time. He  often bumped  into  other  people  due to his lack of  attention to the 'outside' world. Tim's expression, ears, and scars gave him the appearance of being mentally retarded. b) A Typical Day in the Life of Tim Tim was up early in the morning, dressed, and taken into the front room by the staff. Tim appeared to love the mornings. He ran a circle pattern in the front room/dining  room area every morning with a big smile on his face and  made small noises. Tim stopped occasionally, held up his arm so the sun touched his hand, laughed, and then continued his circular run. The  breakfast was brought to the table and Tim took  his seat when  called by the staff. He ate from a training bowl with a spoon. Tim was a very messy eater and his food fell on his shirt, the table, and the bench he was seated on. He had a hearty appetite and usually ate second and third bowls of cereal. Tim frequently took food from May  and April. At the end of a meal  123 Tim  ate the food that had fallen on the table and bench. He  that was  on the floor, food or otherwise if left unattended.  Tim finger  gazed  and  at his fingers for hours at a time. He  his thumb  incontinent. He, back  also ate anything  to staring  oblivious  to  the  world  at these times, removed the wet at his finger  and  around and  thumb. The  stared at his index him.  Often  he  was  soiled clothing, and went  staff  were  discouraged with  constantly changing Tim's clothes. There were times when the staff sat Tim the toilet for an hour and Tim Then  fifteen  himself and  minutes  to an  on  would not urinate or have a bowel movement.  hour  later  Tim  soiled  himself. Tim  usually  wet  had to be changed before leaving for the day program despite the  staffs effort to seat him on the toilet before breakfast. Tim  arrived at the day  walk.' If it was  program and  went to the front room to 'circle  sunny and warm Tim found the sunniest warmest spot and sat  and basked in the warmth finger staring. On  other mornings, Tim pushed either  another participant, furniture, or a staff member. Tim's pushing behavior was a person and  pushed their arm  a  problem. He  approached  or leg. If the person  resisted Tim  applied more force. The actions were never violent, rather he used  a slow, steady, applied pressure, just enough to move the arm  or leg. If the  person pushed back Tim  either went to  another  person  and  pushed harder. If the person left Tim  started  to push,  or followed the person  and  when they  stopped moving he pushed them again. This pushed.  If  pushing it was  rhythmically. If Tim  behavior June  had she  various screamed,  responses curled  continued to push June she  (very hard) with her feet. Tim  appeared  from  into flailed  a him  the ball, and  person  being  and  rocked  kicked him  as if he did not even felt the blows  124  hitting him. He kept right on pushing her despite the forceful kicks and punches. June screamed and hit herself while Tim pushed her leg until the staff came in and  took June out of the room. Tim got up and looked for someone else to  push. If no else was available to push Tim circle walked and stared at his thumb and index finger. The day program staff often complained  of the unruly  mood June was in due to Tim. Tim  appeared to have no interest in any of the activities at the day  program. The staff had to use hand over hand. Tim seemed to live in a world of his own. On occasion, Tim sat down and would not move. The staff wanted him  to attend a program. This posed a problem for Tim would not move. At  these times if the staff tried to move him he went limp, refused to stand up, and if pushed held on to anything within reach. It appeared to be total passive resistance. Tim never pushed or hit. He just let his body go limp and made it difficult to move. Tim's favourite activity was lying in the sun without  moving except to  finger stare hour after hour. The staff had to be careful not to let Tim sit in the  sun if they  wanted him to attend  a program for his passive resistance  techniques went into effect upon attempts to remove him. Tim  usually soiled himself three times  efforts of the staff to monitor however, was not unpopular compensated played  during the day despite the best  his liquids and take  him to the toilet. Tim,  with the staff. His behaviors while upsetting were  by his gentleness. Frequently, he sat with  a staff person and  a touch game where the staff would touch his fingers. Tim looked up  and smiled. This game could be played for hours with Tim. After the day program Tim returned to the group home. He started his  125 circle walk, or laid in the sun until dinner. His incontinence continued. On cloudy or rainy days Tim held his arm  circle walked under the flourescent lights in the front room,  up to the light from time to time and smiled. He  vocalized 'aboo'  softly with his broad smile. Tim's behavior breakfast. He  during dinner was  ate two  much  like the behavior  or three helpings with a spoon from  exhibited at  his training plate  followed by some theft from May's and April's plates. After dinner Tim porch  until it was  times. He  circle walked, finger stared, or laid in the sun on the  his bath  time. Bath  time  was  another  of Tim's favourite  followed the staff when called to the bath, took off his pants, and got  into the tub on his own.  He  usually had to be helped out of his shirt before he  sat in the tub. Once in the tub Tim got as close to the tap filling the tub with warm water. Tim stayed in the tub for over an hour. After the bath Tim willingly got into bed  was  dressed in his pajamas and  with a big smile on  his face. Two  put into bed.  Tim  of the staff played  'peek a boo' with Tim. He  hid his face under the covers and peeked out. The  staff caught  'got you.' Tim  him  lights out Tim was The  and  said  asleep in minutes until he was  weekends for Tim  and sunny outside. If it was front  room. Tim,  sleeping.  smiled. Once the staff turned the  as  during  awakened the next day.  were spent lying in the sun when it was  warm  cold or rainy he circle walked and ran around the the  week, enjoyed  going  to bed  at night  and  126 Participant Five: April Age: 39 years Height: 5' 6" Weight: 125 Lbs. a) Physical Description April's  most immediately noticeable feature was her lack of teeth. Many  of her teeth have been removed. This was because April sometimes bit people. In the past while she was institutionalized certain of her teeth were removed as a  result  of this behavior.  April also walked on her toes. These two features  made April appear immmediately different to the observer. She appeared to be taller than she really was because of the toe walking. April constantly vocalized and  picked her nose, vaginal area, or her sweater. April ate the fluff from the  sweater. Her brown hair was cut quite short. Pink and purple were the colours April chose to wear. She was always dressed in these two colours. April, due to these physical features and behaviors, was noticeably mentally retarded. b) A Typical Day in the Life of April April was the last person awakened up by the staff in the morning and came to the breakfast table last. In the morning her skin tone was very pale. April appeared visibly tired and sleepy. She did not eat a lot of food and was characterized as a picky eater. However, the foods that April liked liked,  and stole  them  from  the other  participants. April's  she really  breakfast  was left  almost untouched. She spun her plate and threw most of the food  onto the  table. April liked her tea in the morning and had two or three cups, plus she stole tea from May and Tim. Celia (staff) came to April and had her leave the  127  table. April went down the hall to her bedroom. April liked to hug  the  staff and  came right up,  and  pushed her face into the person that she  and  slurped while she  liked. Both tea and  participants'  tea  and  hugged. Often she  was  opposed to doing. April was  coffee are liked by  coffee. April was  down whatever was  in a cup  from April while she  was  April. She  an  window, and  sweater. April  loved  morning the  laundry  sweaters and  carried  to  room, sat on picked  sweaters  door was  and  cup  and  and  thief and  socks  let the  arm.  the  ate in  left open. April  them around under her  of tea. April took the  stole the staffs' and  bed,  breakfast, the  walk to the day pica. The  the  her  fluff from  her  if the  cup  April  staff watched April carefully April walked into  board was  not  except for her shoes. The April during the  while she the  and  the  crossed the  dining and  cup  grabbed them  and  locked.  participants to  like May,  exhibits  yard to the  living room. Next  day she  board onto the floor front room, naked  reclothed her in the bathroom.  circle exercise rolled the  for her favourite food, which was  two  a  other  then appeared in the  staff took her and  took  Celia (staff) gave her  emptied the contents of the cup locked. She  hand. This  went in and  sweaters fall. Celia  staff prepared  went into the bathroom and  cup  out  right  program. April stopped to eat grass for she,  program. Once inside  gulped  stared  returned them to the laundry room. Then the laundry room door was After  other  would bite them.  vagina. She  carry  room  forceful about what  in seconds. If someone tried to remove the  holding it she  rubbed her  staff when they  extremely fast cup  After breakfast April returned to her the  picked her nose  did this behavior. April bit or hit the  forced her to do things she she  hugged them 'eeaahhing,'  balls without looking at them  weiners. Sal, made her roll a ball in the hand  128 over  hand  method  and A p r i l  b i t her other h a n d  participant h a d a sweater on, and A p r i l other person, T i m , resisted away the  from  The staff interceded  Another  and moved T i m  m i s s i n g teeth her bite m a r k s were noticable on  hugged  the other participants  as well  short time and were gentle. T h i s morning  astute  at opening  stripped  One her  many  to her shoes  wandered naked  at  process.  other participants and staff. April  a  this  attempted to pull i t off the person. The  and was bitten.  A p r i l . Despite April's  during  this  hand  of the staff  Larry  over hand  morning.  across the l a w n  mouth. A p r i l joined the site.  of the lock  systems She  accompanied  by L a r r y  hugged  the staff  The hugs  Dan. A p r i l have  lasted  was v e r y  invented.  April  program  and  the grass  from  got out of the d a y  'eeaahhing.'  r a n out, brought a group  April  as the staff.  April  back,  and took  of higher functioning people i n another her and they  sanded  items. A p r i l  through the sanding exercise. A p r i l  building  was  constantly  taken b i t her  other hand during the hand over hand routine. The weiner bits given a t the end of the session appeared When home  while  she returned f r o m  and every  bedroom  cup that  was  the d a y p r o g r a m  I t was  April  checked  out for tea or coffee. A p r i l  to sit on the bed, r u b her vagina, pick  'eeaahhing.'  minutes  to keep her a t the table and she didn't bite  not uncommon  for A p r i l  out the group  then  her sweater  Larry.  went  to her  and eat the fluff  to spend  thirty  or  forty  i n her room alone sweater picking and staring out the window. April  patrolled  the house,  checked  doors  to see i f they  were  open and  looked for cups with t e a or coffee left i n them. The kitchen door was open  April  went i n , opened the fridge door and tried to take food out. The staff evicted her for  being a nuisance. A p r i l  wandered  down the h a l l  into  a bathroom,  opened  a  129 cupboard, threw the contents onto the floor and then left. Kurt (staff) saw the mess on the bathroom  floor. He  took April to her bedroom. Kurt then cleaned  the bathroom. April sat on her bed and picked fluff from her sweater.' April was  a fussy eater at dinner as well as breakfast. She  spun her  plate, and found the potatoes and ate only the potatoes. She threw off the plate any vegetables or meat that were in the potatoes. April stole Maj^'s potatoes but the staff stopped her before she ate them all. April stayed for tea at the table after  dinner. She  had  four cups  and  tried  to steal  Tim's tea but the staff  moved Tim away fom her. April then went back to her bedroom, sat on her bed, 'eeaahhed,' rubbed her  vagina, and ate fluff from her sweater. She occasionally patrolled  looking  for tea, coffee, open  participants' the  doors, or  sweaters  to carry.  the house  When  the other  bedroom doors were open April went in and threw their clothes on  floor and emptied their dressers. April went to bed early and slept without  disturbance until awakened the next morning. She was a sound sleeper. A  weekend day for April was  much the same as a weekday except for  an outing to a park. April moved about twenty feet away from the group. She sat and ate grass. Sal (staff) went over to her and 'wrestled' with April  who  'eeaahhed' and playfully wrestled her back. April appeared to enjoy the contact and  hugs from Sal. April appeared to kiss the top of Sal's head  while the3'  played. June went over to April and tried to sit on her. April pushed her away. June left and ran back to the main group. The staff started to return to the van group  and April was  called by  to the van. They  a staff member. April got up and followed the  returned to the group  home and  April  went to her  130 bedroom. Later April appeared naked in the front room. This was weekend day  for April.  E. DISCUSSION AND The the  another typical  ANALYSIS OF  preceding descriptions  participants'  functioning  independent living skills. The  THE  PARTICIPANTS  indicate a number of severe deficits in all of including;  intellectual,  adaptive  participants are disabled people. A  behavior,  and  list of the major  deficits would include; 1.  They have no verbal language, (not one word)  2.  They do not dress themselves  3.  They are incontinent, (at least on occasion)  4.  They cannot prepare any  5.  They perform a high degree of stereotyped movement  6.  They lack accepted social skills (public masturbation, stripping, anal picking)  7.  They require almost total supervision for their safety and survival. In  other words the  meals or serve themselves a liquid beverage  participants  are,  'idiots' (MacAndrew &  Edgerton, 1964). The  for  by  survival  are  met  the  what's archaically referred  for food, shelter, and On  the  other  staff. Without  the  presence  of  the  staff, the  participants apparently  seem to, need constant supervision to ensure their needs  general well-being are hand,  the  met.  participants  behavior. Each participant recognized and (ie. the  as,  participant groups' everyday needs  participants would likely perish in a very short time. The lack common sense, and  to  exhibit  some  fairly  sophisticated  used many objects in their environment,  swings, trampoline, radio, musical instruments, certain furniture, rooms,  partiality to certain staff members). Each participant has  curiousity, likes,  and  131 dislikes in their environment. Pleasure and displeasure are expressed through each person's across  overt emotional both  responses  settings and  and  through  these emotional  time.  Staff  responses  members  have  are consistent responses  from  different participants that are consistent through time. The  participants appear to be aware of their place and role in the social  pecking order of this group (ie. Dan but ignores Tim's aggression). The  will touch May's head and have her move, participants utilized different coping strategies  to maintain their position in the social order. Dan the staff or the other participants. June was  was  not aggressive towards  aggressive towards the staff and  other participants. The adaptive behavior the participants exhibit in preserving the social order (Dan  ignoring aggression by  Tim,  May's avoidance  of confrontation  by moving places when touched by the other participants) seemed on the surface to be reasonable and  successful strategies^ The  social order appeared to follow a  hierarchy that placed April in the number one position. Tim powerful. Dan  was  four position. May  was  the next most  number three in the pecking order. June was  in the number  was  at the bottom of the order. These social rankings were  not altered throughout the time the researcher was April  took  could push Dan, May  food, clothing, and May,  The  any  of the participants. Tim  April from their places. Dan  from their places. June could move May  living room. Ma}' was  and  and  places from  in the setting.  could move June and  from her seat in the kitchen or  at the bottom of the participants' pecking order.  participants each have individual likes that are consistent across time  settings, (ie. Dan's walks, June's puzzle, Tim's sun bathing, May's kitchen  sitting, April's  sweaters).  Each  participant  liked  certain  staff  members. They  sought out and made these likes known within the context of their environment.  132 Dan  appeared  to learn, through  observation, the use of objects he liked, for  example, the use of the radio. June had sensitized the staff to her need for privacy from  the other participants. Tim was allowed to sun. The participants  did communicate their wants and likes to the staff. The participants overall, appeared to tolerate the formal programs that the staff had set up. The participants did not display  a great interest in these  programs, they were not often violent or aggressive toward them known  perform  the staff who made  these tasks. The participants did make their likes  to the staff  through  their  emotional  responses  and dislikes  and behavior.  Each  participant had a pattern of behavior that was understandable within the context of their environment The  and they were, after observation, predictable.  participants' behavior can be divided into three main categories of  (1) inside, (2) outside, and (3) boundary overlaps. Each of these categories will be reviewed below with examples cited in the following section.  1. I n s i d e  The  inside category refers to behaviour  herself. This  type  of action  and activity  environmental stimuli. Everyone as  day dreaming,  rubbing  from  a person performs  does  not involve  with him or  other  people or  time to time exhibits inside behavior such  themselves,  or fussing  with  their  clothes. These  behaviors are exhibited when environmental stimulation is low, while waiting, or as a response to boredom. Inside behavior may be viewed while observing people in traffic tie-ups, waiting rooms, or when a person is alone in a public place. Inside activity is a common activity. The  coding of inside  behavior  has been divided  into two subcategories:  133 inside  physical behavior  these  categories  and inside reticular  is the intensity  behavior. The distinction between  and degree  of self-involvement.  The inside  physical behavior was exhibited in the participants through actions such as ear and  nose picking; penis, vagina, and finger rubbing; and sweater picking. The  second  category,  inside  reticular  performance of stereotypic  behavior,  behavior. This  was observed category  in the participants'  appeared  more intense and  self-absorbing than behavior coded as inside physical behavior. Each of these classifications will be discussed in the following paragraphs. Examples  of participant  behavior  will  be provided  and the definitions and  theoretical bases explored.  a. Inside Physical Behavior  All  the participants exhibited  inside physical behavior. April  rubbed her  vaginal area, picked her nose and picked her sweater. Dan rubbed his groin and picked his ear. May rubbed her face in pattern. Tim held his penis and picked his fingers. June rubbed her head and vaginal area. These actions are private behaviors and usually not performed in public places.  As  previously  stated,  these  behaviors  are associated  with  boredom,  waiting, and detachment from the environment. These activities are self-involving and  are not externally focused. However, the person is not totally withdrawn into  him  or herself while performing these activities. This classification reflects mild  detachment and a mild degree of reliance of self for stimulation. The April  participants engaged in prolonged periods  sat in her bedroom  for long  periods  of inside physical behavior.  and picked  sweater. Dan rubbed his penis for extended periods  wool pills  from her  on the window seat. Each  134 participant had a favored unique repertoire of inside physical behaviors. A a  staff member was able to draw the attention of the participant through  verbal  prompt when they exhibited  inside physical behavior. This  behavioral  repertoire was easily disrupted and the participant's attention focused on the staff member.  b. Inside Reticular Behavior  This completely  classification  refers  self-absorbing  observable manifestation ritualistic  stereotypic  to visible  behavior  for the participant.  that  Stereotypic  was  intense  behavior  and  was the  of inside reticular behavior. Each participant had unique  movement patterns.  May rocked and grred. June rhythmically  Tim circle  walked  and finger stared.  rocked from side to side. Dan waved  his arms and shook his head. These behaviors were rhythmic and repetitive. The behaviorial patterns were deeply ingrained in the participants. The  intensity of self-absorbtion was observed to include emotional responses  during the peformance of stereotypic movement by the participants. The emotional responses did not appear to be the result of external factors: either other people or environmental stimuli. The stereotypic seemed  inexorably  self-absorbed The  linked  and  unified.  behavior and the emotional responses The  participants  appeared  totalty  during the performance of stereotypic movement. participants  spent  a majority  of their time  performing  stereotypic  movements. The environment did not appear to interest the participants while engaged in this activity. The staff were unsuccessful  when they attempted to  intercede, through verbal prompts, to have the participant focus on them. The  evidence  from  sensory  deprivation  experiments  indicates  that the  135 reticular area of the brain develops its own environment. This creation of data may This  data  developed  includes  data and sensation in a monotonous  be viewed as an adaptation to monotony.  retinual  visual  phenomena  (a  form  of  hallucination), childish emotional responses, and audio hallucinations (Burney, Heron, 1957;  Robertson, 1961;  inner generated  sensory  data  mild 1961;  Schultz, 1969; Suedfeld, 1980; Zubek, 1969). The is not observable  nor  environmental.  The  inside  category of reticular behavior is based on this theoretical construct.  2. Outside The  outside category refers to behaviors the participants exhibited which  involved interactions with other participants, the staff or the environment. These actions were directed externally and were interactive between the participant and external objects, stimuli, or people. The outside category represented the antithesis to the  inside  category. This category  of behavior  coded  behaviors  which the  participants exhibited that were externally focused. The  outside behavioral category has been subdivided into two classification:  outside interpersonal behaviors and outside environmental behaviors. The distinction between  these  activities  and  two  categories is that  actions the  participants  the  interpersonal classification involves  initiated  with  objects that were in the  physical setting. Each  of  these  classifications  will  be  presented  below.  Examples  participants' behaviors and details of each category will be presented.  of  136 a. Outside Interpersonal Behavior  All the participants exhibited outside interpersonal behaviors. Dan hugging Maria was a typical example of his manifestation  of this classification. April took  staff members by the arm and led them to a given  room. May placed  staff  members' hands on her back. Tim engaged in a finger touching activity with Lidia.  April  hugged  and kissed  staff  members. These  are all examples of  participant/staff outside interpersonal behaviors. Examples of participant/participant outside interpersonal behavior was April hugging Dan and leading him by the hand. Tim pushed Dan's arm or leg. Dan touched the top of May's head and May left the seat for Dan to sit in. These interpersonal  actions  were  classification  self-initiated  was  by  the participants.  an observable  manifestation  The  outside  of a participant  seeking interpersonal contact. The examples given above were frequent, repeated, and  unique  random  to the individual participant. The interpersonal  but rather  represented  an order that  actions  was observable  were not  across different  protocols. Each interpreted  participant  exhibited  by the observer  participant. This  unique  as orderly,  interpersonal meaninful,  behaviors.  These  and purposeful  were  to the  classification represented the social behavior of the participant  group.  b. Outside Environmental Behavior  This  classification  refers  to participant  activity  which  involved  an  environmental objective as the focus of the participant's attention. The behaviors were self-initiated by the participant. All participants exhibited  unique repeated  137 actions in this classification. Dan  went to the radio, turned it on, and altered the volume and station.  April went into the bathroom and removed all the miscellaneous toiletry items from  the cabinet.  June  searched  for her puzzle to carry  and look at. Each  participant was observed initiating behavior which was externally focussed on an environmental object. These  behaviors  indicated  recognized certain objects indicated  recognition  to the researcher  that  the participants  each  and chose them for a reason. The repeated selection  and preference of certain objects. In a sense the objects  selected had a meaning for the participant. The was  theoretical construct  intrinsic  motivation  used to ground the outside  and curiosity. The participants when  inside behavior appeared to exhibit curious behavior  was  stimulation.  behaviorial category  possibly  based  The participants  on were  an  and exploratory  intrinsic  apparently  need  not involved in  activity. The outside  for sensory  motivated  input  and  to interact with the  environment.  3.  Boundary  The  Overlaps  boundary overlap  understanding  between  category refers to behavior that involved  the participants  activities that participants exhibited overlap  and the staff.  This  category  a mutual involves  when prompte by the staff. The boundary  category has been subdivided into two classifications: conforming positive  behaviors and conforming negative behaviors. The distinguishing feature between these two classifications is the degree of independence and social adaptability of the actions and activities.  138 i  Each of the classifications will be presented below. Examples of participant behaviors will be given and details of each subcategory will be provided.  a. Positive Conforming Behavior  This classification of behavior emcompassed observable actions and activities that  the participants  exhibited  which  were  considered  acceptable.  Behavior  classified in this category included participant compliance to the directions of staff members such as responding when their names were called, performing a task when prompted  (e.g., 'Pull your  pants  up.'), and performing  tasks they were  trained to do (e.g., eating dinner with a fork and not stealing food). This behavioral classification represented social behavior that was viewed as acceptable by the staff. These behaviors are critical for community living in the PMR negative  population. Many of the behaviors listed in previous categories were and represented  barriers  to community  acceptance  conforming positive behaviors were an area of importance represented  apparent  recognition  and  understanding  of the PMR. The  to the staff since they  between  them  and the  participants.  b. Negative Conforming Behavior  This considered  behavior as  classification  unacceptable  represented  social  activities.  observable The  actions  participants  that stripped  were at  inappropriate times. Yet, at bedtime or in the bathroom the staff assisted them in removing their clothing. Stripping in public was coded as negative conforming behavior. Dan urinated in the toilet near the greenhouses when he went out for a  walk.  Dan  was  incontinent when  in the group  home  or day program.  139 Incontinence was The  coded as a negative conforming behavior.  researcher hypothesized that the participants had  developed a  learned  helplessness. This concept of learned helplessness is worth consideration. Could the participants have developed a dependency on the staff? Information gathered from observations of the participants  participants' behavior appeared to support this notion.  performed  many  behaviors  inappropriately  (e.g., stripping, opening  doors, trying to leave the house). These behaviors, from one are  functional, yet  in  fact  are  dysfunctional  and  The  frame of reference,  inappropriate  as  they  are  learned  new  performed by the participants.  4.  Discussion  In summary, the participants exhibited intelligent behavior and behavioral repertoires. The up  participants did not need to have specific programs set  to learn these behaviors, they appeared to learn through trial and  issue of relevance and  whether or not compliance to staff initiated programs  the 'best' method of instruction for the participants is at issue. The a lot of time and  the other hand the participants learned  to use the radio, trampoline and or kettle) on their  participants,  world of their own.  within  the  swings, May  new  skills (ie. Dan  to lead the staff to the coffee pot  through  their  staff and  stereotypic  behavior, were  able  to  cut  outside world. They were in, it appears, a  At those times juice, or walks, or music, did not seem to  them back. The  answer  staff devoted  own.  themselves off from the  bring  was  energy to programs that did not apear to have an impact on  the participants. On  The  error. The  link between boredom and person  to  boredom  seems  stereotyped movement as hypothetically  possible.  an The  140  participants' stereotyped movement is reduced during times of activity in events they 'like.' Dan  tried to 'get out' of the house. He  the door to get out, turned back when it was 'humped' the  couch. June 'understood' the  would get a cup  and  The induced  symbol for 'walk' is her  staff did not  concept of learned  the  either stereotyped or coat.  'read' these clues as  May  wanted a  a statement of  interests by the participants.  dependency  (allowing  locked and  present it to the staff to communicate that she  drink of coffee or tea. The self-motivation and  often, after trying to open  is a  helplessness in the  factor  worthy  of  participants created  consideration.  The  participants to learn through more trial and  by staff  dignity  error on  of risk  their part)  might offer more efficacy. The  participants can learn, as the protocols illustrate.  They  many  did  not  seem  to  learn  of the  essentials  for  their survival; the  of symbolic interactionism  is important. Have  question is: why? The the  use  participants  of the perspective learned  to  be  'idiots' through  internalizing in  views the staff have of them? Did the institutional staff and staff,  treat  the  participants  like  'idiots'? Did  the  themselves  now  the  the community  participants,  in  the  end,  internalize this view of themselves? Does the treatment of the participants, both in the 'institution' and The  use  overlaps might  of lead  the community create the dependency and  the to  analytic a  new  abstractions perspective  of inside, outside, on  programing  in  'idiocy'? and the  alteration in the theory of the participants being totally dependent, by and  the use of trial and  boundary PMR.  The  the staff,  error might greatly facilitate the growth of independent  living skills for the participants. The yet the participants 'inappropriately  staff dressed and  undressed the participants,  strip' their clothes off when they wanted to  141  disrobe.  At  disrobe.  The  other times symbolic  the  participants needed  interactionist  perspective  assistance offers  participants 'playing a social role' expected of them.  a  from unique  the view  staff to of the  CHAPTER V. ANALYSIS AND  INTERPRETATION OF THE  DATA  This chapter will present the analysis and interpretation of the data. The major coding categories presented in Chapter TV  were: (1) inside, (2) outside, and  (3) boundary overlap. Table 8 on the following page is a schematic representation of the coding categories, subclassifications, and behavioral manifestations for each of these categories. The PMR  observable, understandable, and  orderly behavior of the  participants will be developed for each category. The emotional responses of  the participants will be presented. The appeared  initial  observations of the  participants' behavior  devoid of meaning, purposeless, and  by  the researcher  random. These inital observations  were predictable given the literature cited in Chapter I. The  PMR  their  (Baumeister,  highly  Bricker  &  aggressive, unusual, Campbell,  aforementioned  1981;  traits,  interactions of the PMR. study  the  and  Cleland, 1979; literature  The  does  behavior  Rago, not  observations and  provide evidence that the PMR  and at least a rudimentary  stereotypic  are noted for  1976). Beyond  discuss  the  social  1978;  noting the order  or  analysis of the data from this  do have predictable patterns of behavior  social order. Presented in the following pages is the  analysis of the data to support the interpretation of the data. The  cagtegories  will  be  presented  in  order  of  amount  participants spent engaged in the behavioral manifestations. The was  of  time  inside category  the most frequent, then the outside, and finally the boundary overlap.  142  the  143  Table 8: Schematic D i a g r a m  of Coding  Categories  Inside (A)  Reticular (i) stereotypic behavior (a) emotionality  (B)  Physical (i) bodily self stimulation (a) autoeroticism  (B)  Environmental (i) seating arrangement (ii) possession recognition (iii) object oriented behavior  Outside (A)  Interpersonal (i) social order (ii) staff preferences (iii) sexuality (iv) intimacy (v) SD3  Overlap (A)  Negative (i) learned dependency (a) incontinence (b) stripping  (B) Positive (i) f a m i l i a r i t y of routine (ii) staff initiated activity  144 A. T H E I N S I D E  CATEGORY  This category was divided into inside physical behavior and inside reticular behavior.  The  inside  behavior  observed  physical  category  autoeroticism  category  accounted  by the researcher, which  has  been  for a  majority  as the literature divided  into  of the participants' suggested. The inside  body  self-stimulation  and  was not as predominant nor as self-absorbing as the inside reticular  category.  1. T h e I n s i d e R e t i c u l a r C a t e g o r y  Stereotypic  behavior  was  exhibited  by all the participants. It was an  outstanding, noticeable pattern, and a dominant characteristic in the participants. Stereotypic  movement  participants. 1978;  was  Stereotypic  ever  present  behavior  across  contexts and time  is a characteristic of the PMR  in all  the  (Baumeister,  Cleland, 1979; Hollis, 1978; Snell, 1982). The  exact  researcher  movements  observed that the participants' stereotypic movements were  for each  participant. Each  participant  exhibited  stereotypic  movements that were different from the other participants. The movement was similar to a part of their personality and like personality, each participant had their own unique and definite pattern of stereotypic movement. The degree and intensity  of the movement  varied  within  the individual but the pattern of  movement did not vary. June exhibited a stereotypic motion that required her hands be placed at eye  level on either side of her head, the fingers curled in to the palm of her  hands, and she moved her head from side to side, staring at each hand in a rhythmic  motion.  The  researcher  labelled  this  stereotypic  movement  'finger  145 staring.' At into her  other times, June lay on  stomach, crossed  This movement the  her  ankles,  researcher  the floor on her back, pulled her knees and  labelled the  rolled her  head from side to side.  'prenatal rock.' June performed this  motion so frequently that the hair at the back of her  head was  the continual rubbing on the floor. June also rocked back and  matted from  forth while seated  in a chair. This movement was  labelled 'body rocking.' This form of short hand  for  movement was  the  participants stereotypic  incorporated  by  the  researcher  rather than continually write each movement each time the participant exhibited the stereotypic pattern. Dan's stereotypic movement was Dan  exhibited  stereotypic behavior that  completely different compared to June's. involved  large motor movement of his  arms while he shook his head vigorously. This pattern of movement resembled a rock musician staff. Dan behavior was  playing an  frequently  imaginary guitar and  spun  himself  labelled 'whirling dervish.' Dan  his hand that usually involved window  or  around  seeing  the  motion  on  was  called 'rock star' by  one  foot  as  he  the  walked. This  also used a stereotypic movement of  watching the of his hand  movement in the in the  reflection of a  shadows. This  was  called  'reflection waving.' Tim lasted  was  a  'circle walker.' This stereotypic behavior of Tim's frequently  for sixty minutes. Tim  walked  circle  patterns  around  furniture in  the  living/dining room area. Tim's circle walking patterns were very intricate patterns as illustrated by protocol #15 47. 48. 49. 50. 51. 52.  that was  typical of Tim:  Tim walks a circle around the dining room table 4 complete times. He stops and picks up a crumb from the table and eats it. Tim then reverses his direction around the table and again reverses direction, and stops by the patio door, turns again and circles the dining table. Kurt puts the front room lights on and Tim circles the dining table and into the front room, he moves  146 53. 54. 55. 56. 57. 58. 59. 60. 61.  through the furniture, very close to it but not touching it and circle walks under the over head light in the front room. He stops and 'finger picks' under the light. Kurt turns the light off and Tim circles the dining table and stops and 'finger picks' under the dining room light. After three minutes of staring Tim circles through front room furniture. The pattern is intricate as the furniture is close together and Tim's eyes are often closed. Tim moves between furniture without opening his eyes and changes circle patterns with never touching the furniture. He stops under the  62.  over head light and Diagram  furniture  lay  A out  'finger stares'  (Appendix in the  D)  shows  group  Tim's  home. Tim  performed a motion, identical to one  pattern sat  in the  observed during  that involved his index finger and thumb. This was May's stereotypic movement involved body rocked forwards and mouth and  still.  backwards as her  Flute  quieted  May.  the  for hours  and  called 'finger picking.'  voice which 'gggrrred' and  her  hands ran over her face, into her  body rock. There were very few  music  sun  and  his circle walk behavior,  nose, then back through the sequence again. May  constant 'ggrr' and or  her  of movement  However, even  exhibited an almost  times that May at meals  she  was rocked  quiet and  'ggrred.' April's stereotypic movement involved  her  voice which made an  'eeaaah'  sound. April would pick her nose, pick pills of wool from her sweater and  eat  both commodities. April slurped noticeably while she ate, then 'eeaahhed' again. The personalized patterns  but  stereotypic to  the  behavior  researcher.  very personal  of The  the  participants' became  stereotypic  individual patterns  movements and  predictable  were  not  and  random  movements specific to each  participant. Stereotypic behavior is individualistic and unchanging except for degree and  intensity within the person. The  researcher  observed  that  intensity of stereotypic movement. The  the  participants  varied  the  speed  and  specific muscles motions were the same, it  147 was cited  the rate of movement that changed. The in the  happier. The  following speed  section, is one  of the  stereotypic  example of Tim's circle walking,  case. Tim  walked  faster  and  movement increased in relation  became to the  degree of happiness he exhibited. The emotional responses of the participants appeared to be reflected in the stereotypic behavior they exhibited. Another emotional response describes  and  example of this correlation between  stereotypic behavior is illustrated by Protocol #26  May:  34. 35. 36. 37. 38. 39. 41.  May is seated sideways in the green chair in the kitchen. She is gurring quietly. May taps the chair, table, and her teeth with her index finger. May's movement starts to speed up, her hand moves faster, her body rocks quicker. She starts to laugh at apparently nothing, she rocks, moves more, and more, and becomes very loud to the level of shouting, clapping her hands together, and sucks her fingers. Then the laughter starts to diminish and her movements  42.  slow as she quietens down The  which  participants all exhibited this correlation between stereotypic  intensity, and  emotional responses. The  motion,  researcher regarded  this phenomena as  indicative of a relationship between stereotypic behavior and  emotional responses  in the participants. The  emotional responses that were observed  did not appear  to be a result of external environmental changes or people interacting with the participants. The  stereotypic  motion,  it appeared,  was  a  manifestation of the  degree of emotional response in the participant. These actions occurred in both the  day  program  participants was behavior.  and  in the  group  home. The  stereotypic  both their most frequent behavior and  behavior  of the  the most self-involving  148 a. The Emotional Reticular Category  Inner  directed  emotional  responses  were  also  manifested  participants. This, according to one researcher, is important  by  all  the  knowledge  for  the  understanding of the PMR: Have you ever noticed a PMR sitting all alone, in relative solitude, break into a broad grin or laugh? For, if we had unequivocal affirmatives on both these questions, we would have evidence that some among them have the capacity of self, or other regard or that a thought crossed their mind and caused them to smile (Cleland, 1979, pp. 80-81).  The  researcher noted  emotional responses  in the participants  as in  the  above cited example of May. Tim provided another example of the interaction between  stereotypic  movement, intensity  and emotional  response.  Protocol #8  contains an example of Tim's emotional response: 39. 41. 42. 43. 44. 45. 47.  Tim, circle walks while finger staring Tim runs and opens his mouth wide in an almost smile. He runs fast circles around the dining table, he is laughing, and making a cooing sound. He continues to run the circle, four times, he is up to ten times. He continues to run the circles are larger and he laughs. Tim lets out an 'aaabouuu' sound as he runs a circle into the living room as he circles back to the dining room he laughs.  48.  Tim appears so happy All  of the participants  exhibited  emotional  responses  when  alone. The  researcher was careful to note if there had been any change in the  external  environment  to prompt this change in the participant. No external changes in the  environment  were  noticed by the researcher. There  were  not only changes to  smiles, at other times, especially in Ma}', a tear came to her eye and crying was seen and heard by the researcher. This category of behavior observed be dependent on the environment  in the participants did not appear to  or on other people. The inside category of  behavior was observed by the researcher as intra-individual. Since this category  . 149 of behavior represented a important. The was  majority of the behavior  of the  participants, it is  researcher's classification of behavior observed in the participants  predicated on the basis that the participants had developed coping strategies  (inside  physical  environment Now  and  reticular behaviors) as  an  adaptation to the institutional  that they had lived in throughout a majority of their lives. that the participants were in a smaller setting with a larger staff-  participant ratio, these coping mechanisms were so ingrained and they did not stop because of the new  environment. The  of stereotypic behavior is unknown (Baumeister, 1978; 1976;  habitual that  origin and maintenance  Baumeister  and Foreman,  Hollis, 1978). Stereotypic movement as a characteristic of the PMR  representative  of  a  major  part  of  their  behavioral  repertorire  and  has  been  documented by many authors (Baumeister, 1978; Cleland, 1979; Snell, 1982). The  stereotypic  movement  and  emotional  responses  of the  participants  engaged in stereotypic behavior led the researcher to infer that there was direct correlation between the two. The 1957;  a  literature on sensory deprivation (Heron,  Heron, Hebb, Doane, Scott and  Bexton,  1956;  Suedfeld, 1980;  Zubek,  1969) indicates that there are behavioral changes due to a prolonged exposure to a  monotonous  environment.  emotional responses, and  an  These  changes  included  hallucinations,  increase in activity in the reticular  childish  area of the  brain. The  researcher, after  three  months  of observation, inferred  participants reacted to the institutional environment  that  the  with behavior similar to that  exhibited by subjects of sensory deprivation. They experienced hallucinations and childish  emotional  responses  due  to  participants, in effect, develop their own  the  reticular  area  of  the  brain.  The  sensor} data which is as, if not more, 7  150 involving behavior  as  the environment.  and the observed  The  researcher  emotional  responses  hypothesized were  that  stereotypic  a manifestation  of this  phenomena. The participants, due to sensory deprivation, not mental retardation, had  become self-reliant for sensory stimulation. The  physical  and  autoerotic  subclassifications  were  less  intense  manifestations of this adaptation to self-reliance. These two subclassifications are more  common  in the entire  population  participants in these socially inacceptable  except  for the public  nature  of the  behaviors. The social rules of society  dictate masturbation to be a private act. To a lesser extent the behaviors of bodily  stimulation  of the nose and ears are also seen as inappropriate  in a  public place. The  participants were unaware of the social taboo of their behaviors. The  deeply ingrained The  participants  pattern  of self-reliance for sensory stimulation  occupied  themselves  for a majority  was paramount.  of the time  with inside  physical and reticular behavior.  2. The Inside Physical Category The  body self-stimulation behavior included April's picking and eating wool  pills from her sweater, picking her nose, and vocalization of 'eeaah.' Dan's body stimulation  included  picking  his ears and nose. Tim was on medication which  prevented him from regurgitating his food. Regurgitation  of food would have been  coded in this category as it provides a body sensation  of taste. He also picked  his fingers. May rubbed her face, nose, mouth, and ears. She vocalized 'ggrrrs.' June  picked  behaviors.  her fingers.  Each  participant  had  unique  body  self-stimulation  151 This category, as previously mentioned, appeared similar  to behavior  associated  with  monotony,  waiting, and boredom. Body  self-stimulation, whistling, singing, and vocalizations people  coping  with  monotony.  The participants  to the researcher to be  are common  engaged  these  behaviors for behaviors for  prolonged time periods. The interpretation of these behaviors was that the participants had become self-reliant  for stimulation.  Years  of living  on large  wards  had created a  self-sufficiency in the participants. They did not seek external stimulus, not due to  profound  retardation,  but rather  as  an  adaptation  to a  monotonous  environment.  a. The Autoerotic Category  The researcher  autoerotic  behavior  as a reliance  of the particpants was  on oneself for stimulation.  interpreted  The literature  by the on PMR  available to the researcher did not discuss autoeroticism. April, Dan, and June were observed exhibited  were  stimulating their genitals. The behaviors these three participants noted  as masturbation  by the researcher. A  description and  discussion of these behaviors is given below. Dan  manifested  sexual  tendencies  and became  sexually  aroused  after  physically hugging and dancing with female staff members. This activity produced autoerotic behavior in Dan. A description of Dan engaging in masturbation after hugging  Maria was given in the last chapter. Dan was frequently observed by  the researcher to stimulate his penis to erection. A description of this in Protocol #44 10. 11.  was as follows: Glynda comes in the kitchen. Dan hugs her and grabs her hair. She says 'You, let go!' Dan lets go after a minute. Dan goes to the  152 12. 13. 14. 15. 16. 17. 21. 22.  fridge and takes out the juice container and hands it to Glynda. She pours him a drink. Dan drinks the juice and hugs her. They do 'a two step dance.' They disengage and Glynda pats his chest he makes an 'YAAYAA' Tarzan-like yell. Dan hugs her again and they 'dance' yet again. Glynda disengages herself and has Dan leave the kitchen Dan is in the front room with his hands down the front of his pants He is lying on his stomach 'humping' the couch with his rear end  23.  bobbing up and down April was  researcher one room April was immediately  observed day  by  the researcher in her bedroom masturbating.  went to observe April  naked on  the bed  The  in her bedroom. Upon entering the  as she  rubbed her vagina. The  researcher  left the room to allow the participant privacy. April appeared in the  kitchen five minutes later dressed in a skirt and  sweater. April approached the  researcher hugged him and 'kissed' the top of his head. April performed  frequently rubbed her  by  her  rubbing  her  genitals with  vaginal area  her  with  hands. This activity her  hands  outside  was  of her  clothing. April often sat on her bed and rubbed her vagina in this manner. June observed  exhibited  on  occasion  autoerotic when, as  June, that she smiled at him up and down. Protocol #34  behavior  in  the  bath  participant observer, he  tub. was  The  researcher  assigned  then lowered her hands to her vagina and rubbed  illustrates this behavior:  18. 19. 20.  June now lies back in the tub. I wash her neck and lift her neck to wash her shoulders. She lies back again. She is smiling and not performing stereotypic behavior. She smiles at me and plays  21.  with her vagina occasionally May  and Tim  were significantly different from the other three participants  with respect to autoerotic activity. The  researcher questioned  Tim.  having  The  researcher  to bath  staff were unaware of Tim during the observation  erection or masturbating. Tim  period was  the staff concerning  an erection or masturbating. also unaware of Tim  having  The an  held his penis on occasion, but it did not become  153 erect  nor  did  he  rub  it. He  merely  held  it. This  was  coded  as  physical  self-stimulation. May May  was  not observed by  the researcher  did during the observation period engage in coprophagy (eating feces). The  autoerotic  activities  of Dan,  self-reliance. The  participants utilized  themselves.  researcher  The  self-sustaining people who with  to exhibit autoerotic behavior.  other  people  to  April,  their  developed  an  and  own  June  were interpreted  bodies to create  awareness  of  the  pleasure  participants  as for as  did not seek environmental stimulation or interactions  the  degree  they  relied  on  themselves. The  staff  and  researcher were unaware if the autoerotic acts led to orgasm.  B. THE  OUTSIDE CATEGORY This category was  interactions. The  divided into interpersonal interactions and environmental  outside  category accounted  for the  participants' behaviors  and  actions that involved another person or object in the environment. This category represented original  the  participants seeking  perception  of  chaotic  stimulation  behavior  by  the  from  outside  themselves.  participants observed  by  The the  researcher became ordered as the researcher noted the predictable behavior in the classification. The  outside category will be presented under two subclassifications:  (a) environmental and The  (b) interpersonal.  participants'  outside  environmental  behavior  arrangement, recognition of objects that were owned by use of objects in the environment for stimulation. The participants' behavior by and  random. The  the researcher  included  seating  a participant, and  initial observations  the  of the  appeared devoid of meaning, purposeless,  patterns of behavior and  movement of the participants became  154 familiar and repetitive to the researcher over time spent in the setting. The first observable  pattern  participant had observed  and  a  the  seating  favourite and  recorded  free time had was  was  by  the  arrangement  usual  of  the  participants. Each  place to sit. This seating pattern  researcher. The  participant during  specific places where they chose to sit. The  was  nonstructured  seating arrangement  not random or varied. Dan  sat most frequently on the window seat. May  in the kitchen. June sat on the T.V. bed. Tim  seldomly sat down. He  sat on the green chair  couch. April sat in her bedroom on  the  preferred to 'circle walk' in the dining room/  front room area. This pattern of seating and movement was  consistent throughout  the research period. The June  participants, at least June and  expressed  that she  wanted  to go  April, also recognized for a walk by  dropping it at the feet of a staff person. When she was and  sat on  her  TV  couch  hugging  the  coat. April  their clothing.  taking her  was  very  definite about  pink the other  purple. In the morning if April was  not given both sweaters by  grabbed the staff member's arm  took them to the laundry  most insistent about this and  escalated in aggressive  and  ill, June took her coat  sweaters. April preferred two sweaters in particular, one was  and  coat  was  the staff she  room. She  was  until she  had  behaviors  both her sweaters. The very  concept of ownership  definite  and  observable  and  seating arrangement began to become a  phenomenon  of the  certain places, furniture, and articles as 'their own.'  participants. The}'  recognized  Further examples of this are  present in the data in respect to seating as mentioned above, as well as their bedrooms. Each participant went to their own  bedroom (except May)  to sleep and  155 when they 'chose' to be alone. April frequently spent a large amount of time in her  bedroom. When June was ill or suffering from her allergies she went to  'her' bedroom. Dan, always went to his bedroom after a shower or bath. The  physical  world of the PMR  was patterned to the participants and  they 'knew' where they liked to sit, which bedroom was theirs, recognized certain possessions, and where to sit at dinner. The orderly  nature of the PMR  was  clear in the above terms of actions, seating arrangement, and possessions. The  other  subclassification  of the outside  category  behavior observed by the researcher between participants participants dominant  and staff. The observations revealed  and others submissive  consistently  that  was  interpersonal  and participants, and  certain participants were  through time and across settings.  May was the most submissive participant. Dan, Tim, June, and April were all observed to touch May  when she was seated. May  seat for the other participant. Protocol  #12  then got up and left her  records one such incident  that is  typical of this displacement activity: 2. 3. 4. 5.  May is seated in her usual green chair quietly gurring. Tim comes in and touches May gently on the top of her head. May gets up and goes and sits on the telephone table next to the green chair. Tim sits on the green chair  10.  Tim leaves the chair and May sits in it again now that it's vacant. Dan  when pushed by Tim would never exhibit aggression and often left  the seat he was in to avoid the  group. She once removed  a confrontation.  April was the most dominant in  a sweater from  Tim and when  he would not  co-operate, bit him. Tim never 'pushed' April. June, who was the most physically powerful and most aggressive towards the staff was not the most dominant of the  participants. Tim pushed June, Dan twisted  her hair, and April  took her  food and clothing. June exhibited the fewest coping strategies to the advances of  156 other  participants. June  had three  strategies: leaving, screaming,  and hitting.  Protocol #13 illustrates one example of a June and Dan interaction: 12. 13. 14. 15. 16.  June is seated on the yellow chair in the kitchen and May is in her usual green chair. Dan comes up to the observation window and puts his hand through the small pass through opening in the window and touches June. She stands up immediately and 'finger stares' and 'head nods.' Kurt looks over and says 'Sit down June'  17.  but she won't. Dan moves away and June sits in the chair again. Neither  participant  of June's other  who  usually wound  pushed  June  two responses generally  were particularly  ignored  her screams  effective. The  and hits. June  up hitting herself and biting her hand. The other participants  continued to push, grab, and take from June. The pecking order placed April at the top she could move May from her seat, hug Dan and lead him around by the  hand, take  Tim's clothes, and steal June's food. Tim was  pecking order: he could move Dan, and May  next  in the  from their places. Tim frustrated  June by 'pushing' her until she hit herself and screamed. Dan and order  could move May from her seat and tug June's hair. June hit May  could make May and  was  leave her chair. May  not observed  to have  was at the bottom of the pecking  dominance  over  any  of the other  participants. The  observations and coding developed  not previously recorded for the PMR.  a number of definite characteristics  First, there was a definite pattern to the  places and furniture the participants' preferred and it was as if there was an ownership to certain seats for each participant. Second,  there  appeared  to be  a  rudimentary  social  heirarchy  in the  participants. The heirarchy did not appear to be based on physical strength or prowess. The dominant person, April, was also the participant who displayed the most affection to the other participants and was the initiator of the affectionate  157 actions. The activities of this group of PMR terms  of predictable  seating  was orderly and comprehensible in  arrangements,  participant  ownership,  and  their  response to routinely planned activities, and a pecking order. Further studies of other groups of PMR  should yield information as to the degree of generalization  of this rudimentary social order across other PMR  groups.  The participants all manifested an attachment The  emotional  response  and the degree  to a specific staff member.  of compliance  the partipant exhibited  when with that staff member was noteworthy. The example of June's relationship was cited in the previous chapter. June smiled when Larry came in the room, went to him first, and when agitated often sought Larry's company. Dan's relationship with Maria was also an exceptional relationship. Dan smiled when he heard Maria's voice, hugged her before Glynda other  full  time  female  staff).  Maria  was  sought  out by  or Diane (two Dan, he came  immediately when called by her, and was more compliant with Maria than the other staff members. Tim played  and Lidia  exhibited  the same  a 'finger' game with Lidia  type  of relationship. Tim sat and  that he did not do with any other staff  member. Lidia, in turn, 'understood' Tim more than the other staff members and at staff meetings  emphasized  Tim's strengths and positive attributes. Tim came  to Lidia on his own initiative and when called by her. May did not manifest this type of personal relationship with any one staff member. May  maintained a relationship with all staff members. The researcher  recorded her taking each staff member's hand and placing it on her back for a back rub. It is only hypothetical that due to May's coprophagy, and  grotesque  appearance  that  staff members  rectal digging,  and other participants  did not  158 develop a relationship with May. most inward participant and  An  alternative hypothesis is that May  was  did not seek interpersonal interactions with  the other  people. April maintained  a relationship with  Sal. It was  Sal who  tickled April. Sal engaged in activities with April that were met emotional  responses by  April. The  wrestling and  other staff members with April. The  literature on  group. The  the PMR  with  and  agreeable  tickling were hot utilized by  relationship between April and Sal was  as frequent as Tim and Lidia, Dan The  wrestled  not  and Maria, or June and Larry. does not discuss the sexual patterns of this  researcher observed manifestations of sexual awareness and expression  in three of the participants: Dan,  April, and  June. These three participants, to  varying degrees, expressed autoerotic and/or sexual attention to others. A  description of Dan's behavior  towards Maria  chapter. Glynda occasionally recieved hugs and Dan,  was  overt gestures of affection from  though in less degree and intensity than Maria. Dan  behavior  and  researcher  frequently  during  the  had  an  observation  erection. This period  was  detailed in the last  was  not  exhibited masturbatory  not  aware  true  of Tim.  of Tim  having  The an  erection or engaging in masturbation. Dan  frequently sought out  female  staff members  and  rubbed  his body  against them. At the end of a session of hugging and rubbing his body against a female staff member Dan The  sexual expression and  directed towards Maria. Dan and was  went to the front room and played with his penis. activity of Dan  was  the most developed  and  appeared to be aware of Maria in a sexual sense  attached to her. April and June were more autoerotic and did not act  or behave towards male or female staff members in a sexual manner. The  fact  159 that Dan was the youngest  participant, at least ten years younger, may be a  significant factor. The  participants also displayed times of tenderness with each other. On  one occasion June was ill and seated in her bed room April sat with her for over an hour. They just sat side by side on the bed. June was disconsolate and screamed while April sat beside her and made gentle 'eeaah' sounds. April was also observed on several occasions hugging Dan. April at other times held Dan's hand and walked  with him. June and May were observed on several occasions  sleeping nestled up to each other. The 1978;  PMR  are noted  for their self injurious behavior (SIB) (Baumeister,  Cleland, 1979; Hollis,  1978). All of the participants exhibited SIB. The  context and the events that preceded the display of SIB in the participants is relevant to the topic of SLB. April  exhibited  SLB by biting her hands. This was not an uncommon  practice for all of the participants. A close examination of the participants' hands revealed callouses on the areas they placed in their mouths and bit. April's SIB involved this hand biting and is illustrated in protocol #41: 42. 43. 44. 45. 46. 47. 48.  Larry seats April at a table. He is going to have her use a sanding block. Larry takes her hand and places it over April's hand and lifts her hand up and puts it on the sanding block and moves his hand backwards and forwards, thereby making April's hand move backwards and forwards. April puts her other hand in her mouth and bites it and vocalizes 'eeaahh!!' with vehemance. Larry has a food reinforcer that he gives her. Larry again uses  49.  hand over hand and April bites her other hand The  researcher observed  on many  occasions the participants  bite their  hand when the staff used the technique of hand-over-hand training. The use of hand-over-hand training resulted in self injurious behavior by the participant. SIB appeared  to be the result  of external  stimuli  and not as self  stimulating  160 behavior. June  exhibited  the most  profound  degree  of SIB. There  were  several  occasions when June required medical attention, usually stitches to her face, as a result of SIB. June hit herself with her hands, bit her hands until they bled, and  hit her head into walls. One example of June's SIB was illustrated in the  description of a day in her life. June had tried to take the meal cart into the front room and when it became stuck on the door, had hit herself. June also exhibited SIB as illustrated in protocol #21: 15. 16. 17. 18. 19. 20.  June tries to leave the dining table but Dan is seated on the outside seat so she cannot leave. She stands up on the dining bench. June screams and pounds her head with her fists. She tries to walk over him but cannot do this, so she sits down again, screams and pounds her head on the table. One of the staff move Dan and June runs to the TV couch screaming. Dan has not shown any reaction  21.  at all SIB  in the participants did not appear randomly or without an observable  event or reason. The SIB was related to external factors. The PMR, and in this case, the participants exhibited incidents  of SIB  with  this behavior and the researcher observed many  the participants.  All of the incidents  noted  were  environmental in nature and appeared 'explainable' and rational to the researcher. June exhibited  SIB when pushed by Tim, when the food cart was blocked by  the door frame, and when Dan was seated on the bench so she could not leave the dining table. SIB  appeared  to the researcher  to be correlated  participants. The participants when forced  to perform  to frustration in the  tasks exhibited  SIB and  when they were unable to achieve an activity, such as pushing the food cart, abused themselves.  161  C. T H E BOUNDARY The  OVERLAP  CATEGORY  boundary overlap, category included behavior noted by the researcher  that exhibited reciprocity or mutual expectations between the participants and the staff.  This  category  has  been  divided into  boundary overlap and (b) positive  two  subclassifications:  boundary overlap. These two  (a) negative  subclassifications  will be presented in the following paragraphs. The  negative boundary overlap was interpreted as learned helplessness by  the participants. The concept of learned helplessness is based on the idea that people become dependent upon other people when they continually are treated as incompetent  (Nirje, 1980;  Wolfensgerger,  1980). The two behaviors exhibited by  the participants which the researcher coded as learned helplessness were stripping and  incontinence. All the participants stripped their clothes off during the observation period.  It was a common sight to see one of the participants naked in the group home or day program. The researcher was aware that the participants were able to undress  themselves.  assistance behavior  to of  strip public  What for  was  baths  stripping  interesting and bed  by  the  at  was  that  night.  participants  the  participants  The negative  or  was  a  in  fact  needed  anti-social skill.  The  participants most commonly used the skill inappropriately. The  researcher  recorded many  observations  of the  staff  undressing  the  participants. The staff with very little assistance from the participants removed the clothing of the person. The inference the researcher made was that both the staff and the participant expected this behavior of each other. It was not due to incompetence expectations.  in  the  participants  but  rather  it  seemed  based  on  mutual  162  The  incontinence exhibited  by  the  researcher coded as learned  helplessness.  observed using the toilet on  their own  observed June, April, May,  and  Dan  participants was All the  another behavior  participants, except Tim,  without the aid of staff. The go into a bathroom and  the toilet. Yet, all the participants were incontinent researcher inferred that, again as in the  the were  researcher  independently use  a majority of the time. The  stripping example, both the  staff and  the participants expected this behavior from each other. The  positive conforming boundary overlap category was  participants  exhibited  which  requests of the staff, and manifested an  indicated  were  understanding of the times of day  manifested  researcher recorded  an  expectation  each evening  that  for the  nightly routine consisted of May,  June sitting on observation  the  window  of  dining  table  intently  and  staring  recognized by the participants who  as exhibited  program to start, and dinner  social  the  at  a  participants  time. Each of the specific  time.  were not  in  The the  stared into the kitchen at meal  in the kitchen, staring at the stove;  staring in; and at  bed  rules,  in their behavior  participants, who  kitchen, gravitated to the observation window and time. The  aware  the  the expectations of the daily routines. The  before meals, waiting for the day participants  they  behavior that  the  stove. The  April and  Dan  bathing  at  schedule  the was  would, at the sound of their names called by  a staff member, go right into the bathroom. Other  examples  when having her  of  positive  nails clipped by  conforming  the staff. Tim  with a staff member. These actions rules that were mutual and  behavior  indicate  a  laughed and  June  pleasure  played peek-a-boo  knowledge of the  reciprocal for the staff and  activities seemed to represent mutual enjoyment by  included  activity  and  the participants. These  the staff and  the participants.  163  D. DISCUSSION OF THE The behaviors.  CODING CATEGORIES  inside coding  category  Overall the researcher  setting with the impression own  contained  majority  of the participants'  of the observation  period left the  that the participants were people who  preferred their  individual company. The  at the end  the  other  two  coding  categories  did not  represent  a  large percentage of the participants' behavior. The separation  participants, certainly from  their  mothers,  through lack  of  institutionalization, early  childhood  had  experienced  stimulation,  and  a  montonous boring environment. There is support in the literature that deprivation in  animals  and  humans  results in  stereotypic  behavior,  emotional responses, and hallucinations (Baumeister, 1978; Berkson, 1973; Doane, Scott,  1976; &  Cleland,  Bexton,  1979;  Hollis, 1978;  1951). These  behaviors  coprophagy, childish  Baumeister &  Heron, 1957; were  Foreman;  Heron, Hebb,  all displayed  by  the  responses,  and  participants. Theoretically, the preoccupation the  stereotypic  behavior, childish  emotional  with self that the participants exhibited may  institutional  retardation. The  environment  and  not  as  a  function  have been a result of of  profound  mental  effects of sensory deprivation or restricted stimulation conditions  are reliable and powerful to the individual. Actuall)', stimulus reduction is a powerful way to elicit changes in a variety of psychological and behavioral processes. Even stripped of melodrama, it produces a range of reliable effects (Suedfeld, 1980, p. ix). The  past twenty-five  environmental  stimulation  years of studies on sensory deprivation or restricted technique  (REST)  research  has  shown  phenomena occur for the subjects during restricted stimulation periods:  that  visual  164 There is certainly no doubt that subjects in restrictive stimulation conditions experience perceptual phenomena. Among these are vivid dreams, day dreams, fantasies, hypnagogic and hypnopompic (that is experiences that occur in the borderline state from wakefulness to sleep and vice versa), spontaneous firing in the retina, and the perception of endogenous, residual, or low-intensity stimuli of which the experimenter is not aware (Suedfeld, 1980, p. 150).  This  evidence  environmental  supports  the  hypothesis  stimulation results  that long  term  in hallucinations,  a  exposure  to restricted  dream-like  existence, of  which other people are unaware. There is support for the theory that people who deprivation focus more and (Robertson,  more on  themselves  and  have experienced sensory less on  1961). Usually a person focuses on environmental  the environment stimuli. However,  as environmental stimuli become restricted the conscious mind focuses increasingly on  stimuli  from  within  the  person.  The  environmental  input  becomes  important as the person focuses on inner material (Robertson, 1961). The  less  person  begins to react emotionally to their inner thoughts: As the individual becomes more and more preoccupied with his own consciousness, the thoughts, emotions, and residual stumuli become increasingly separated from context and other structural anchors (Suedfeld, 1980, p. 389). The seem  to  behavioral patterns of the participants coded as the inside category fit this  pattern. The  institutional  mothers were not present. There was attachments,  cuddling,  nurturing,  no  playing,  envirnonment  is restricted. Their  stimulation from or  other  families, emotional  normal  stimulation  as  experienced by children in a family. The (1951),  experimental  Suedfeld  (1980),  evidence from and  Zubek  participants, as victims of long term  Heron, Hebb, Doane, Scott, and (1969) supports restricted  the  hypothesis  environmental  Bexton  that the  stimulation,  may  165 well experience retinal visual phenomena of which the staff are not aware. This perceptual  phenomena was  category  which  participants  to  non-observable There  acted the  as  classified a  exclusion  for  people  the  boundary of  internal imagery  is support  by  to  the  or  researcher the  staff.  thoughts  focusing  their  as ' the  actions The  that  and  inner the  attention  'inner' analytic  behavior category  of  was  the the  participants experienced. on  inner  material  and  becoming disinterested in environmental stimuli. The  theory that stereotypic behavior was  creation of inner The  inner/outer  for the  mental imagery fit the  analytic category was  participants behavior. The  staff and  pattern  exhibited  by  the  the participants.  also congruent with the analytic categories  participants did exhibit interactions with  objects in the environment but  exhibit interest in any  the result of deprivation and  a majority  of the time they did not  thing other than themselves. The  accustomed to focusing on their own  the  inner thoughts and  participants had become vivid dreams  (Suedfeld,  1980). The  times that the participants did exhibit interest in the environment the  stereotypic behavior either was  not present or diminished in degree and intensity.  This  by  observation  laboratory  is supported  where  the  subjects,  the who  behavior, were offered a toy. The stereotypic  research were  on  stereotypic  frequent  exhibitors  subjects preferred the toy and  movement (Baumeister, 1978). The  environment and  behavior of  in  the  stereotypic  did not exhibit the  'interest' of  the participant in the environment appears to have an effect upon the amount of stereotypic  behavior  stimulating  an  exhibited  by  environment is the  Stimulation, however cannot be  the  participants. Thus, theoretically the more  less stereotypic  behavior should be  simplistically interpreted. The  present.  researcher observed  166  the staff engaged in one to one activities with the participants which involved art  and music. The participants  still  exhibited  stereotypic  behavior. It would  appear from the data collected in this study that stimulation must be interpreted in consultation with the individual preferences of the participants. The  staff  activities  of both  the group  for the participants. These  stimulation  or • interest  home  and day program  activities  to the participants  appeared and  they  had designed  insufficient  in either  continued  to exhibit  stereotypic movement. The researcher coded activities the participants appeared to prefer and exhibited an interest in on their own or with a staff member. Dan learned  appeared  to prefer  on his own to turn  volume.  It  was  observed  walks,  the trampoline,  and rock  music. Dan  on the radio, change the station, and alter the that  Dan  received  no  instruction  for this  accomplishment. Dan was 'interested' in the radio and music. The staff did not view the radio as a program for Dan. The staff emphasised Dan  arts and crafts.  exhibited stereotypic behavior and did not look at the tasks in the arts and  crafts. April wanted walks and tried to open the door of the home to leave and was usually denied. April spent a majority of time in her bedroom performing stereotypic behavior. The staff did not notice the clue of self-initiated curiosity and  activities  or the degree  of stereotypic  behavior  as interference  in the  progress of the participants. May behavior  appeared  was  to enjoy certain classical music tapes and her stereotypic  not present  when  she listened  to these  tapes. The researcher  observed that May did not perform stereotypic behavior when the staff massaged her back.  167 June's  stereotypic  movement  was  greatly  reduced  when  country  and  western music was played. June also enjoyed a hot bath and a small child's puzzle which she held  and stared  at. The arts, crafts and music in the day  program did not appear to interest June. Tim  seemed to enjoy the finger game with Lidia. He played peek-a-boo  with the staff and did not exhibit stereotypic behavior when engaged in these activities. Two other activities which Tim enjoyed were hot baths and walks. Tim did not exhibit stereotypic behavior during these activities. The When  participants  engaged  appeared  in preferred  to display  activities each  preferences  for specific  participant exhibited  activities.  a decrease in  stereotypic movements. The activities the participants preferred were observable to the  researcher by the participants self-initiating the behaviour, the reduction in  stereotypic behavior, and their emotional responses. The  observations of the researcher in the setting support the hypothesis  that the participants were focusing on inner material. The times that this was most  apparent  was  at times when  the activity  was  not of interest to the  participant, or when there was unstructured free time. The individual participants when engaged in self directed  activities that were outer focused exhibited less  stereotypic behavior. The and  theoretical combination of the emotional responses, stereotypic behavior  the deprivation  behavior of the PMR  of the institutional  experience  as an explanation  of the  is a new approach. There are theoretical positions which  support the belief that stereotypic behavior is a result of deprivation in humans and  non-human  animals  (Baumeister,  1978; Baumeister  and Foreman, 1978;  Hollis, 1978; Lewis and Baumeister, 1982). There has not been a theory which  168 incorporated the emotional responses exhibited during stereotypic behavior.  E. THE ROLE OF EMOTIONS The continuum  coding  categories of inside, outside, and  boundary  overlap are a  which moves from a complete focus on self (inside), to gratification of  self from the environment other people (boundary  and other people (outside) to reciprocal relations with  overlap). Emotional responses from  the participants were  observed in all categories. Cleland (1979), as quoted in previous chapters, hypothesizes that emotions are an indicator of intelligence. The  view  response  or an  there must be  a  thought  that in order to have an emotional appraisal  of the  environment  has  support from a number of authors: They (emotions) are, as I have been arguing, judgements, and they are intentional and intelligent. Emotions, may therefore be said to be rational in precisely the same sense in which all judgements may be said to be rational; they require an advanced degree of conception of self and at least some ability in abstraction (Solomon, 1976, p. 240). The  researcher  observed  the  PMR  participants  exhibiting  emotional  responses throughout the observation period. The observation protocols recorded a high  degree  categories emotions  of emotional  and is  in  responses  all participants.  important  to  a  in the The  theoretical  participants  interpretation understanding  across all the coding and of  understanding profound  of  mental  retardation and the participants. The  researcher reviewed  support for a  Arnold (1960), Lazarus (1968), and  cognitive theory of emotions  by  Plutchick (1980). All of these authors offer  evidence to support the hypothesis that emotions are judgements and judgements are the result of appraisal and  rationality. A  cognitive theory of emotions  was  169 an  accepted  theoretical  construct.  The  PMR  participants  appeared  to  be  communicating through their emotional responses. If emotions were rational then there should be a rational reason that the participants  laughed  movement  and  explanation  of  and  cried.  deprivation the  A  were  inner/outer  review  of  the  literature  instrumental  in  developing  directed  emotional  responses  on  stereotypic  a  theoretical  observed  in the  participants.  F.  SUMMARY  The  day-to-day  life  of  the  PMR  participants  was  ordered  and  understandable through analysis of their behavior using the coding categories. The participants exhibited behavior that was behavior of the PMR The The  on social order. The  is not unfathomable when viewed from this perspective.  inside category was  physical and  rational and based  interpreted  as a result of sensory deprivation.  reticular subclassifications contained the major activities of the  participants. Suedfeld (1980) presents data that long term environmental  stimulation results in hypnagogic and  person. These  The  hypnopompic  are borderline states between wakefulness  person is immersed in fantasies of his/her own outside  environment and  category  represented  the  exposure to restricted  and  states in the  sleep where the  creation. participants  awareness  other people. This category of behaviors was  of  the  not as prevalent  in the participants. However, the interpersonal and environmental subclassifications were  observable  structured.  This  and  represented  classification  behavior  suggests  that  that the  was  orderly,  participants  possessions, have social order, and were aware of environmental  rational, did  and  recognize  stimulation and  170 other people. The  boundary  overlap  category  represented  reciprocity  and  mutual  awareness between the staff and  the participants. This coding category displayed  the social awareness of the PMR  participants.  Finally, the emotional responses displayed by the participants was by  the  dislikes  researcher of the  Lazarus, 1968; this model. The  as  a  system  participants. The Plutchick, 1980;  to understand  the  cognitive theory  Solomon, 1976)  individual  preferences  and  of emotions  (Arnold,  1960;  provided the theoretical base for  participants' behaviors could be understood  categories when emotions were viewed events or experiences.  as  viewed  rational and  across all the coding cognitive appraisals of  CHAPTER VI. THEORETICAL IMPLICATIONS OF THE The  analytic category of 'inside/outside' was  day in the field. The category was the research and that  the  inside  an  on the fourteenth  tentative at that point and was  the coding progressed. The was  developed  STUDY  adaptation  on  emergent as  initial concept of inside/outside was  the  part of the  participants  to the  deprived circumstances of the institution. The participants in their early childhood were understimulated and as a result 'went inside' themselves. The category had an intuitive appeal, but little else to support the notion that this was  in fact  the  was  experience  significant  of the  factor  displayed, was The  in  participants. The their  behavior,  perhaps  of their  the  retardation  stereotypic  movement  a  they  the only behavior they 'were capable' of performing.  emergence of the inside outside category received support from  literature on  stereotypic movement. The  stereotypic motion in humans and of  severity  activity, captivity  or  the appearance of  non-human primates as a result of restriction  caging, and  stimulation. This theory was  literature supported  the  as  a  not accepted by  stereotypic movement. However, it was  result  of restricted  environmental  all the authors on  the topic of  presented and noted as worthy of further  research. The  literature  on  institutionalization  also  pin-pointed  institutions  as  'depriving' environments. The literature presented a higher frequency of stereotypic behavior in institutionalized PMR study of PKU,  than in non  institutionalized PMR.  Further, a  offered support to the concept that retarded children separated  from their mothers showed lower intellectual and adaptive behavior skills than a control group who The  had not separated from their families.  deprivation literature  also  supported  171  the  concept  that  in  clinical  172 conditions with a normal population that deprivation resulted in a state where the  subject experienced  a  change  in  behavior,  and  hallucinations,  or  more  accurately retinal visual phenomena. In essence the results of long term restricted environmental stimulation created an that  it was  outside. The  inner world  that appeared  autobiographical account  confinement supported this phenomena. The  of a  to the subject  prisoner  in solitary  inside/outside category was  supported  from a number of sources in the literature. The  reading of the above mentioned literature resulted in the concept of  inside/outside taking on a meaning that was thought  was  possible for this category. The  present in just the PMR and  larger than the researcher initially  animal studies. The  inside/outside experience was  participants but was  not  present in the normal population  adaptation to deprivation regardless of retardation  was  documented in clinical and experimental conditions across diverse populations The adaptation to monotony was in  the  PMR.  The  literature  and  adaptation and not maladaptive behavior  measurement  of adaptive behavior  on  the  retarded lists stereotypic behavior as maladaptive and depresses a person's score. In  other words, adaptation to restricted environmental stimulus is is interpreted  as maladaptive. The known. It appears humans  and  cause that one  primates  is  for the development of stereotypic behavior is not condition for the onset of stereotypic behavior in separation  from  their  mothers  and  restricted  The extension of the experience of 'normal' humans to the PMR  intuitively  environmental stimulus (Baumeister, 1978; Hollis, 1978).  was PMR  more appealing than using non human animals for comparison. Certainly the participants  exhibited  more  emotional  reaction  than  the  initially expected. Cleland (1979) had wondered whether the PMR  researcher had emoted while in  173 solitude. The  researcher  observed  many  such  displays of emotionality  in the  participants. The  theoretical explanation of emotions in the participants was the next  emergent step in the development of the theoretical position from the observations and  the literature. The cognitive theory  the  literature review  became  of emotions the researcher included in  salient in the development of the inside outside  category. It became apparent that the PMR  did experience emotions and that the  outside, or external causes were not always present to account for the shift in their  emotional  responses.  Thus, the researcher  factors resided inside the participant. The concept  hypothesized  that  the causal  that ideational reasons  were  the cause seemed difficult to explicate in light of the intellectual development of the participants. However, given the theory of Robertson (1961) of the effects of deprivation The  and the retinal visual phenomena  researcher  hypothesized  that  the  that accompanied  participants  were  long term viewing  SD. inside  hallucinations that appeared real, and caused pleasure or distress depending on the reaction of the participant. That this was hypothesized by SD researchers for the normal population provided credibility to the inside outside category by  the researcher. The  understandable  behavior  and  actions of the PMR  developed  participants were  and indeed, logical from this theoretical perspective.  The category of inside/outside became a central tenet to the theory of the behavior and actions of the deinstitutionalized population of non verbal PMR. The inside phenomena was the result of understimulation and the recticular area of the  brain  provided  its own  restricted environmental  patterns  to compensate  for the monotonous and  stimulus of the institution. The feasibility that all people,  regardless of retardation, needed environmental  stimulation was well grounded in  174 the stereotypic behavior literature, the deprivation literature, and literature. The  emotional  reactions  of the  participants were  the institutional  congruent  to  the  theory, the participants were displaying reactions to the internal mental images that appeared to be responding, as  'real.' The  any  other  participants were not schizophrenic. They were  person would, to the  results of long term restricted  environmental stimulus. The  emotional reactions of the participants were the cognitive appraisals of  those images as pleasurable Robertson (1961), and  or distressful. This is confirmed by  Suedfeld  Heron (1957),  (1980) that long term deprivation creates such a  phenomena.  A. CONCEPTUALIZATION AND  THE  NATURE OF  HUMANKIND  Cochrane (1986) states that the theoretical assumptions of a therapist are paramount resulting  in  how  the  treatment  conceptualized  therapist conceptualizes  the  therapist  gives  the  the  clients  client.  The  as 'vegetables,' 'idiots,' and 'sub humans.' The  programs formulated  on  the  bases that  the  PMR  fulfilling prophesy, was the  environment  monotonous, and was  perfect for such  PMR  behavior  have  the been  institutions developed require  the  same  hypothesized that in  in the  The  self  were expected to act this  way,  to develop  behavior developed and  PMR.  (under  stimulated,  the conceptualization  as defectives naturally exhibited this behavior.  observations  considered. The  were inherent  a fact of life. The  over crowded). The  that the PMR The  be  was  aggression  PMR  did not  environmental stimulation that normal children required, and fact stereotypic behavior and  problem, and  PMR  from this study warrant another theoretical perspective to participants in this study exhibited behavior that  was  175 not  expected,  perspective  but  was  adaptable,  curious,  social,  and  that many stereotypic behaviors of the PMR  product of understimulation  and  misunderstanding  understandable. are  an  environmental  is warranted. It is time to  consider a reconceptualization of the theoretical assumptions regarding the The  PMR.  nature of intelligence is often conceptualized as global. Thus, the  without language, score between 0 and  The  20 on standardized  PMR  intelligence tests. The  intelligence tests are cognitive linguistic excercises. Without language this group is bound to be relegated to the bottom ranks of humanity. The receive  in terms of institutionalization only  treatment the  exacerbates the  cognitive linguistic skills. It is time to recognize  PMR  obvious deficits of  that possibly the PMR  require  increased environmental stimulus techniques in order to facilitate their growth and development. Gardner (1976) has  theorized that intelligence is not global. Gardner  has  hypothesized a domain based intelligence system which consists of six separate domains: (1) cognitive  linquistic  ability,  (2) tactile  kinesthetic ability,  visual ability, (4) auditory, (5) mathematical ability, (6) musical domain based intelligence theory and  music  found  amongst  the  accounts for the PMR  cannot explicate this phenomena. The are intact and  population. PMR  (3) spatial  ability. Gardner's  'idiot savant' in mathematics The  global intelligence theory  might well have other domains that  functioning if the conceptualization of profound mental retardation  were altered to account for the effects of stimulus deprivation and  domain based  intelligence. This  study  does  not  provide  empirical  evidence  for  understanding of the cause of stereotypic movement in the PMR. data  from  the  study  are  adequate  to raise the  spectre  that  the  theoretical  However, the the  nature of  176 profound mental retardation has been misunderstood, mistreated, and misinformed. The  research data reveal a pattern of action and  definable, comprehensible, and  ordered. The  not  services  change  from  custodial  theoretical conceptualization of Tregold comprehension  were an  without  the  PMR  behavior modification and PMR  than helpful. The  Dwyer was  PMR.  concommitant  a  group  He  stimulation, and  change  will  in  the  that  were  beyond  of humanity. Sontag, Burke,  state that  PMR unless  do  learn with the  theoretical growth  and  principles of occurred  that  aversive conditioning might be more detrimental to the researcher believes the work of Berkson and Landesman-  instrumental in a reconceptualization of the  Cleland the  treatment of the PMR  were untrainable. Berkson and Landesman-Dwyer  (1976) empirically demonstrated that the modification. They  a  were  entire negation  Yorke (1973) believed the PMR  behavior  care and  that is  PMR.  (1937) believed and  behavior in the PMR  (1979) has advocates developing  PMR.  been a major influence on  the  reconceptualization of  empathic  the  PMR,  an  understanding  of  environmental  awareness of the interests of the PMR.  Cleland  hypothesizes that these interests might include music, dancing, walking, and the emotions are areas of interest to the PMR.  The  that  researcher's observations  are  in accord with Cleland's view. It is possible to demonstrate that the  PMR  understimulation, maltreatment, and misdiagnosis. The  have been the  victims of  data from this study are a  start to the development of the phenomenological understanding of the PMR. hoped  that  further  research  will  provide  greater  insights into the  intelligence and optimal environmental stimulus for this group.  It is  nature  of  177 B. LIMITATIONS OF The  PMR  THE  STUDY  are a very heterogenous group. This makes it very difficult to  generalize across previous studies. The phenylketonuria,  Rett  syndrome,  etiologies of the participant group included:  and  tuberoschlerosis.  These  widely  varied  metabolic disorders limit the generalizability not only between across studies  but  even among individuals in the same study. The functioning  PMR  are varied not only in etiology but  level  and  'untestability.' The  I.Q.  of  the  participants  lack of specific I.Q.  also in ability. The  were  unknown  due  scores, adaptive functioning  exact  to  their  levels, and  social skills is another barrier to generalizabilty. A  further barrier to generalizability is the  group home is varied in terms of the number  of  residents.  Some  custodial practices of the resident  ratio, and  group  'group home' variable. Each  staff training, philosophy, programs  homes  offer  very  little  institutions (Bercovici, 1983). The  community  access that  the  residents  change  and  from  the  physical size, staff/ receive  is also very  divergent between group homes. The complicating profoundly  generalizability across studies factors. The mentally  becomes very limited given the above  need to develop accurate accounts of the  retarded  in the  community  should  not  be  lives of the  limited due  to  these diffficulties.  C. IMPLICATIONS OF The  data and  treatment, and  THE  STUDY  analysis from this study have ramifications for the  theoretical understanding of the PMR.  The  care,  data collected revealed  that the participants engaged in stereotypic or inside behavior for a majority  of  178 their  time.  However,  the  participants-  self-initiated with the environment was  and  also  exhibited  behavior  that  was  other people or outside behavior. There  also participant behavior that was  indicative of mutuality and  reciprocity  with the staff. The implications of these findings will be discussed in this section. The  theoretical  understanding  paramount for the care and and  Arkell  technique critical  to  stereotypic  treatment of the PMR.  behavior The  employed  by  the  developing  PMR.  appears  data from  (1982) suggests that stereotypic behavior and  SIB  strategies  for  the  successful  This study suggests that the PMR  behaviors, developing greater independent  to  be  this study  is a  This perspective of stereotypic  intervention  education of the PMR. new  of  withdrawl  behavior is training  and  are capable of learning  living skills, and  benefitting from  educational training. The  important  component  neccessary  dignity and advancement of the PMR  system.  This  the  goals of increased  is an empathic understanding of this group.  It is necessary to develop awareness and communication  to achieve  study  understanding of the PMR  utilized  emotional  responses  and  their  from  the  participants as a communication of their appraisals of acceptance or rejection of activities, situations, and people. This perspective of the emotional responses of the PMR  as a  language  allows increased awareness of the phenomenology of those labelled PMR. analysis of the data suggests the PMR  have a desire and motivation to explore  the environment, exhibit curiosity, and to acquire new study indicate the PMR  The  have been misunderstood  skills. The findings of this  theoretically and denied optimal  opportunities for development. The  researcher suggests, on  the basis of the data collected, that staff  179  training in developing empathic  regard for the PMR  develop a bond with the PMR.  is essential. The  staff must  The bond would allow the staff to increase the  'boundary overlap' category of behavior. Staff must utilize the inner motivation of the PMR  in activities such  as walking with the PMR.  the musical likes and dislikes of the PMR PMR  focus  on  the  environment  and  Staff need to recognize  to maximize the amount of time the minimize  the  time  spent  performing  stereotypic behavior. The  staff must engage in behavior that is appraised by  motivating  and  desireable. This  between the PMR  and  will  staff. The  aid in forming  bond may  staff need to avoid creating dependency. The PMR  are extremely  valid with the PMR.  low. The The  symbolic  a  bond  the PMR and  as  reciprocity  lead to increased reciprocity. The expectations of the staff for the  interactionist perspective appears  staff expect very little and the PMR  to be  in turn become  dependent arid internalize the low expectations of the staff. This  study  suggests  reconceptualized and  that  the  abilities  of  that the development of empathic  the  PMR  need  to  be  understanding is the first  step to achieving this goal.  D. IMPLICATIONS FOR  FUTURE RESEARCH  Despite the above mentioned difficulties with generalizability of studies with the PMR, The  there are a number of important areas in need of further research.  first, is the development of descriptive studies of the PMR  in their natural  settings. Studies with detailed descriptions of the degree of stereotypic movement in  the  different  participants people.  in different  settings, during different  Stereotypic behavior  in the  PMR  is an  activities, important  and  with  research  180 concern. PMR  The  literature  regardless  of  documents the  organic  stereotypic behavior and  or  presence of stereotypic behavior  specific  metabolic  disorder.  The  in the  genesis  of  the maintenance of this behavior needs further research  to explicate the phenomena. It is possibile that with greater understanding  there  will be the development of intervention strategies to eliminate this behavior. Descriptive studies which detail the emotional another  important  development  area  of future  of empathic  responses of the PMR  research. Emotionality  understanding  for the  PMR  and  the  the inner/outer causal explanations of the reaction. The  activities,  and  people  that  create  emotional  concomitant  is in need  concerning  responses  in  the  is  of studies  environments, PMR  are  an  important area of future research. Levels of environmental the PMR  stimulation which elicit the optimal behavior in  are in need of recognition, definition, and  description. Cleland (1979)  notes the activities of walking, music, and dancing. These activities are primarily auditory, spatial, and body-kinesthetic activities. Information on the generalizability of these activities and  others is an  interest  might  to  the  PMR  important  generate  research area. The  increased  theoretical  activities of  consideration of a  domain based intelligence model in general and assist in program development for the  PMR.  The  multiple intelligence  or  domain  intelligence  model proposed  by  Gardner (1983) states the domains are, linguistic, musical, logical-mathematical, spatial, body-kinethetic, and  personal intelligences. These intelligences or domains  are in need of research not only in the PMR ascertain their applicabilty as a model. The and  but in the general population to PMR  with thsir impaired  linguistic  logical-mathematical domains are an excellent population to study the other  domains.  181 There is clearly a need for more ethnographic descriptions of the PMR community  settings to develop a  social, cognitive, and to  develop  a  adaptive  data base for developing  awareness of their  behavior in a natural ecological context. The  theoretical model  for  the  PMR  has  in  been  cited  need  (Berkson  &  Landesman-Dwyer, 1977). This study does not claim to resolve the dilemma of the meaning of emotions and there presence in the  PMR.  This study does offer a description of the daily lives of the PMR group  home  setting.  Further,  phenomenology of the PMR, the  PMR  and  responses of the  of the PMR  empathetic  understanding  the emotions. More research  of the  development of a more extensive literature on the 'likes' and 'dislikes' is important for program development for this group. The utilize for enjoyment and  possibile that the utilization of specific sensory modalities and individual 'learns' lead to increased  tool.  detrimental  and  The  effects of  motivation. It is their role in  Robertson,  source  the  deprivation  use on  of sensory deprivation as infant  PMR  appears  life long in it's effect (Friedman, Sibinga, Steisel, & 1962;  Suedfeld,  deprivation especially for PMR a  'learning' would  how  empirical evidence through studies with  deprivation literature discusses  therapeutic  be  awareness  These studies might be generalizable to the general population.  The  1968;  emotional  PMR.  have positive benefits in understanding more on intelligence and  the PMR.  the  the development a model for interpreting the emotional  of the sensory modalities that the PMR  an  of  utilizing a cognitive theory of emotions might benefit  the literature on  responses is needed and  The  through  in a  of  information  1980). The  literature  is deleterious. The for  experimental  suggests  to  a be  Sinnamon,  that  sensory  deprivation literature can also conditions  to  define  optimal  182 environments for the victims of childhood deprivation. Therapy  for the  non-verbal  PMR  must, of necessity, be  therapy. Empathy has been recognized as a factor in therapy Egan, 1982;  their  non-verbal  (Carkhuff,  1969;  Rogers, 1957). This study is a beginning to developing an empathic  understanding of the PMR of  a  through their emotional responses, intensity and degree  stereotypic movements, and  There is a need to develop  identifications of their  and  dislikes.  a wider data base in all of these areas. Cleland  (1979) recognizes the lack of empathy for the PMR observations  likes  and  this study offers some  as to possibilities for the development of a systematic  model for  developing empathy. This is another area for further research. The  present  trend  of deinstitutionalization  of the  require more data on optimal environments for the PMR their  transition  from  the  back wards to the  PMR  population  will  in order to facilitate  community. The  development of  increased information on the boundaries that divide and overlap the PMR  and the  staff are needed to develop strategies to enhance the development of the PMR  in  community settings. There is a need to develop benefit  them  in  programs,  quality  a theoretical model of the PMR of  life,  and  as  citizens.  constitution declares that the mentally retarded are full and realization  of that idealized  statement  will  not  theoretical models which  equate the  PMR  Canadian  equal citizens. The  materialize without  research into the hopes,, fears, wants, and potentials of the PMR. that  The  that will  increased  It is untenable  to vegetables, sub-humans, or  idiots will result in non-discrimination. 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New York: Appelton-CenturyCrofts.  APPENDIX A RESEARCH CONSENT FORM  191  APPENDIX B OBSERVATION  193  SCHEDULE  194  APPENDIX B Observation Schedule: March - May Date Mar. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. Apr. May May May May May May May  31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7  Type Informal Informal Informal Informal Informal Informal Informal Informal Informal Informal Informal Informal Informal Informal Focussed Focussed Focussed Focussed Focussed Focussed Focussed Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal  Time 3pm-6pm 6pm-9pm 3pm-6pm 4pm-7pm 3pm-6pm 2pm-6pm 3pm-7pm 6am-10am 7am-11am lpm-3pm 3pm-6pm 12pm-4pm llam-5pm 5pm-8pm 3pm-9pm 6pm-9pm 3pm-7pm 12pm-6pm 12pm-7pm 9am-1pm 12pm-4pm 8am-11am 6pm-9pm lpm-3pm 10am-12pm 12pm-4pm 4pm-7pm 7am-10am 7am-10am 6pm-9pm 12pm-3pm 3pm-5pm 2pm-6pm 12pm-6pm 1 lam-4pm 3pm-8pm llam-2pm 3pm-7pm  Place Group home Group home Group home Group home Group home Day/Group Group home Group home Group home Day program Group home Group home Group home Group home Group home Group home Group home Group home Group home Group home Group home Day/Group Group home Day Program Day Program Group home Group home Group home Day/Group Group home Day Program Group home Group home Group home Group home Group home Day program Group home  Person Group Group Group Group Group Group Group Group Group Group Group Group Group Group Client/client Client/client Client/client Client/client Client/client Client/client Client/client May May May May May May May June June June June June June June April April April  Protocol #1 #2 #3 #4 #5 #6 #7 #8 #9 #10 #11 #12 #13 #14 #15 #16 #17 #18 #19 #20 #21 #22 #23 #24 #25 #26 #27 #28 #29 #30 #31 #32 #33 #34 #35 #36 #37 #38  195 Appendix B Observation Schedule continued Date May May May May May May May May May May May May May May May May May May  8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25  Type Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal Formal  Time 3pm-7pm llam-4pm 7am-11am 4pm-8pm 7pm-10pm 3pm-7pm 9am-1 lam 3pm-7pm 10am-4pm 1 lam-8pm llam-4pm 3pm-7pm 6pm-9pm llam-7pm 12pm-3pm 4pm-7pm 4pm-7pm 3pm-7pm  Place Group home Group home Day program Group home Group home Group home Day program Group home Group home Group home Group home Group home Group home Group home Day program Group home Group home Group home  Person April April April April Dan Dan Dan Dan Dan Dan Dan Tim Tim Tim Tim Tim Tim Tim  Protocol #39 #40 #41 #42 #43 #44 #45 #46 #47 #48 #49 #50 #51 #52 #53 #54 #55 #56  APPENDIX EXAMPLES  C  OF OBSERVATION  196  PROTOCOLS  197  APPENDIX C  EXAMPLES OF INFORMAL AND INFORMAL OBSER#7  FORMAL  OBSERVATION PROTOCOLS  PAGE #1  Protocol #7 Week one Researcher Lee Place Hse#2 Date April 6, 1987 Time 3:00 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27.  Here come the guys. It's 3:00. June is in the door first followed by May who, I note, goes straight to the bench couch gurring, then in comes Dan, & he makes a bee line straight for the table where Carmen has the tea out. April and Tim are circle walking. Dan joins May on the couch. He gets up moves up and touches her head. She moves further down the couch as if to make room for him and he lays on the couch too [first time I've seen couch sharing, I think]. Now Tim sits up against Dan. Tim worms in behind him and starts to gently push him. Dan re-adjusts for the pushing. May gets pushed by Dan as Tim keeps pushing him. Dan gets up and leaves and comes to sit at the dining room table. May follows him. Tim gets up and circle walks. May, now the couch is empty, goes back to the couch and lies down. June sits at the table and hasn't moved. April is still sitting there too. Carmen is sitting there too. Dan goes back to the couch where May is. They share, lying on the couch about two feet apart. It's quiet. Dawn & Ken come into the kitchen. May gets up and goes and stands next to where Carmen is seated. The group is mellow tonight. May after a few minutes sits down next to Carmen. June gets up and comes into the kitchen she checks out the top of the fridge [looking for her puzzle, I think, because that's where it's usually kept]. I ask her to sit down and she does. Dan is still on the couch & Tim goes & sits  198 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43.  beside his head and starts to push his shoulder. Dan doesn't react until Tim pushes him onto the floor. All Dan does is get up and sit instead of lying. Dan then gently places his hand on Tim's head. Tim touches lightly Dan's arm. Dan gets up and leaves. Tim follows him. They both come and peer thru the glass into the kitchen. Then they do a circle walk. Dan goes to the window seat as Tim continues walking. Then Dan gets up, his hands thrust thru his shirt collar, and starts walking, the neck becoming stretched. Tim stands finger staring. June is next to me sharing my tea with me. May is gurring, coming to and fro in the dining room. Ken is reading a log book while May goes around draining the tea cups on the table. Carmen is in the kitchen now. Classical music is on the stereo on low volume. Dawn is in the office.  INFOR OBSER#7 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47.  PAGE#2  Dan is back on the bench couch lying spread out. Tim goes over and sits by his feet and pushes his legs. Dan doesn't react except to shift his position for balance. Dan turns and sits, Tim now reaches down by the floor and pushes at Dan's calves. Dan still does not react. June is still beside me. Dan gets up Tim gets up & follows him & pushes him from behind as they walk past the kitchen window, Dan trips and falls but merely recovers his balance. Ken says, "Hey Tim don't push." The kitchen door is open and May comes running in and sits in the vacant chair by June. Dawn comes in and June gets up & takes her hand & goes to the cup board where her puzzle is sometimes kept, but it's not there. They go out looking for it but come back in still looking. I look up & Ken is seated on the couch by the T.V. with Dan twirling the bells and touching them to make the noise. Dan is not all that interested. May, June & I are in the kitchen. Carmen is at the table, Tim is circle walking. Ken is getting Dan to touch the bells as they spin with his fingers to make the noise. Dan seems more interested and leans over to hear the sound. I haven't seen April since she left the table so I go to check her bedroom. She is in it with the "yellow" sweater on making noises & picking at it. She eats the bits she picks. She looks up at me & vocalizes then looks out the window. I go back into the front room. Dan is on the T.V. couch; Tim is circle walking; Ken & June are at the dining table. June has some of her puzzle pieces. Tim still circle walking & Dan stays on the couch. Ken talks to me about the guys. June has the puzzle pieces on the slate board she brings them to me. I re-arrange them and give them back. Tim puts on a burst of speed, humming. Ken gets up & leaves. June. & I sit at the table. Tim stops and stares out the window then fmger stares. June gets up and goes to the couch Dan is on & puts her head in his lap. He doesn't react, they lie there together. She rocks her head in his lap. Dan just sits there. After a few minutes June gets up but her puzzle falls apart & she gets upset. I find some scotch tape and tape them on. June is again happy & lies back on the bench couch. Carmen has been toiletting; 1st Tim, & then Dan. I sit at the dining room table & June comes over & sits too, nodding her head from side to side & looking at me. She screams, I look up & she stops screaming. We are the only 2 in the front room. Dawn, who is in the kitchen, says, "who's doing meds? It's 4:05?" I haven't seen  INFORMAL OBSER#7 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24; 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46.  PAGE#3  June being toiletted. May is still in the kitchen. I look in the kitchen window and Dan's pants have not been done up after toiletting. Ken has put Dan's med's in a cottage cheese spoon but he's not taking them. He finds yogurt & makes a med yogurt spoon which Dan takes willingly. Ken says, "He doesn't like cottage cheese." Carmen does his pants up. He gets a glass of juice and they send him out of the kitchen. May gets a med yogurt spoon & gladly eats it. Tim wanders by the open kitchen door & tries to get in but Ken sends him away. Carmen asks May to follow her but has to physically prompt her. April wanders in & sits down. June is still at the table with her beloved puzzle; Dan is on the bench couch lying with his feet up; Tim sits at his feet and starts to push them. Dan does not react. Tim keeps pushing and pushing. Finally Dan gets up and Tim gets up and follows him. Tim makes a circle past June and then sits by Ken at the table. June is on the other side of Ken. Those three stay at the table and Dan comes over to the kitchen window and bangs his head on it. Dan then goes back to the bench seat. Tim gets up and circle walks around the table twice & then he goes into the front room. Ken stands up and starts to leave the room. Dan gets up and goes to him; takes his hand; gets behind him and gives him a two arm gentle hug. He hugs Ken for awhile then goes to the window seat. Dan gets up but lies right down again. Tim still sits next to his feet and pushes them off again but Dan still doesn't react except to alter his feet to compensate for the pushing. Finally Dan gets up and leaves; so does Tim, who follows him. Dan sits down again, Tim sits next to him. Tim then starts to move Dans hand. He starts to push on Dan's feet. Each time Tim pushes his foot off, Dan puts it back up again. Finally once again Dan gets up and leaves. Tim stands up & then sits again. Dan comes to the kitchen window & peers in. Then moves back against the dining bench & just moves back & forth & then goes to the green couch & leans on it. Dan comes back to the window with his hand inside the back of his pants, moves right by & over to the bench couch & lies down. May comes in & lies on the same couch. Then Tim moves over & sits next to her. She gets up & goes over to the T.V. couch & lies on it. Tim moves up & starts pushing Dan. Dan gets up and Tim follows him. Tim then goes to where May is &  INFORMAL OBSER#7 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46.  PAGE#4  pushes her; she gets up & goes over to the bench couch & lies on it. Tim now circle walks. Dan goes over to the bench couch by May & without even touching her she gets up & leaves & goes to the window seat. Tim continues to circle walk. June for the past 30 mins. has been at the table with her puzzle nodding away. Dan gets up & then lies down again. Carmen, Ken, & I are all in the kitchen. Carmen starts to make dinner. The people in the front room are quiet. June at the table, Dan on the bench couch, & May on the window seat. April is seated in the kitchen. There has been no staff in the front room for about 25 mins. Dan gets up, goes over & touches May on the head, he takes her seat she goes to where he was. Tim continues to circle walk. Dan gets up & checks out the kitchen activity. He circle walks the dining table 3 times, disappears for a second, comes back into view, circle walks the table slowly. He stops in peers thru the window. April gets up & Ken helps her out of the kitchen. She doen't appear in the front room [I guess she's in her bedroom]. June is still seated with puzzle, Dan at the window seat, May on the bench couch, & Tim circle walking. I check April's bedroom out, she's there, seated on her bed. I go to the front room. June gets up & goes with her puzzle to the T.V. couch & lies down. Dan is walking, Tim goes & sits on the same couch as June & starts to push her feet. She doesn't react. He pushes her feet off the couch. She still doesn't react. He starts to push her rear end. She gets up and heads to the dining table & goes to Ken who is there & pulls him to the kitchen door [great coping strategy]. He lets her in June sits down in the chair. Tim picks up a pillow that was on the floor, moves it, then circle walks. Dan goes over to the bench couch touches May's head, she gets up & runs to the open kitchen door & comes in, then Robert comes in & April, who touches his waist with both hands, but Dawn steers her out after she steals a carrot. But April comes right back in & makes a bee line for the hot stove I steer her out; Tim & Dan last two in the front room. Dan at his window seat, Tim circle walking. June gets up & steals a carrot & munches away on it. Dawn makes her sit back in her chair. Dan comes over and stares in the window, then goes away. The activity level subsides. Dan sits at the table, June leaves the kitchen & goes to the rocking chair, April peers thru the window, Tim stands finger  INFOR OBSERV#7 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30.  PAGE#5  staring, May on the floor on her knees pronated beside him. The room stays like this for around 10 or 15 mins. No mad panic for dinner [shift to day light savings?]. Dinner tonight is sausages, potatoes au gratin, carrots, cauliflower, tossed salad, milk, juice, & ice cream. And it is dinner time. The guys with my verbal prompting seat themselves. Dawn & Carmen bring out the dinner trolley. Everyone seems very well behaved tonight. May tries to eat with a spoon but Dawn stops her & gives her a fork. There has been no stealing so far tonight. It's quiet. Oh, oh, Dan just stole from May, June now steals from May too. The eating is much neater than I thought it would be. It feels good, soft music is on the radio. June gets up and goes to the frontroom, stands & looks back in around. Carmen is between May & April. June goes to the book shelf to get the puzzle parts & brings them to me in the kitchen. I re-scotch tape them onto the slate board & she sits next to me in the kitchen. I look up. April is stealing May's potatoes, Ken makes her leave the table. Dawn says, "She got it from both sides, Dan & April." Ken lets April back to the table for tea. Dan gets up & leaves the table. Tim & April are still eating. Dan tries to steal Tim's juice, Ken stops him mid reach. Dan finishes his ice cream. Ken sits between April & May so May won't have all her food stolen. April tries to steal Tim's glass but Ken stops her. June is still with me. April goes to the tray & has more milk but after an extra glass Dawn moves her away. May finally finishes her supper and no one is left at the table so I take my leave.  203 Formal  Observations  P R O T O C O L #22 Place: Hse#2 &  PAGE#1 Day  Program.  Date: A p r i l 21, 1987. Resarcher: Lee. Time: 8:00  - 10:00  am.  Clients: June, Dan, T i m , M a y , Staff: Hse#2 Staff: D a y  Mike, April, &  Sharon.  C u r t [o.n. relief], Val-Dean.  Prog —  Val-Dean, Debbie, Anne, L o m e , K a r e n .  8:00am 1. I come i n . J u n e is i n the green chair i n the kitchen, D a n at the 2. window looking i n , T i m circle w a l k i n g the cooking area i n 3. the kitchen. A p r i l is h a v i n g a bath. V a l is m a k i n g spumoni 4. med spoons. The T.V. & radio are both on. D a n reflection 5. waves. M a y is very active this morning, lots of noisy 6. guurrs and movement. She is right now on the bench seat i n 7. the front room and she comes into the kitchen to the yellow 8. chair. Then she goes back to the bench seat and back again 9. to the yellow chair. V a l gives J u n e the spumoni med spoon. 10. D a n does " a i r guitar." J u n e is quiet. A p r i l and D a n have a b i g 11. hug. D a n is very neutral to it. T i m is i n the kitchen and 12. knocks over the foot bench as he circle w a l k s and has his 13. pants unzippered and his hands on his penis. M a y is now i n 14. "her" green chair. J u n e is on the yellow chair. D a n gets a 15. glass for juice and the juice from the fridge. C u r t helps 16. h i m w i t h it. A p r i l hugs me and eeaahhs!! She then hugs 17. V a l . D a n reflection waves. M a y stands at the counter. 18. T i m reopens his zipper and tops of his pants after C u r t 19. does them up for h i m and he reholds his penis. A p r i l is 20. holding two sweaters, a pink one and a brown one. T i m 21. continues his kitchen circle walking. C u r t calls T i m and 22. T i m goes to him. A p r i l checks every cup for coffee dregs 23. to drink. D a n opens the fridge again. M a y is calm now, 24. [meds??]. J u n e screams and cries w h e n V a l tries to clean 25. her face, J u n e vaguely swats Val's hand away. M a y checks 26. ever} coffee cup for dregs. Everyone is now i n the kitchen. 27. D a n alerts the staff to his need for the toilet [I don't know 28. how but he is praised for it]. E v e r y o n e was ready to go so 29. we w a i t while D a n is helped with the toilet. J u n e screams at 30. the door and pounds her head on the special glass i n the 7  8:50am 31. door. Tim starts to push people. We walk to the day 32. program house about thirty feet away. May is allowed in 33. the kitchen [the only one who is let in]. Tim goes to the 34. front room and immediately does circle walking and running. 35. May is agitated in the kitchen. Dan stands in the front 36. room and does "air guitar." Sharon rocks on the hassock. 37. Tim does furniture pusher on the large arm chair. June is 38. taken to the music room by Lome. April strips & is taken 39. to the bathroom to be reclothed. Dan does "whirling 40. dervish." Stops, puts his hand down his pants and "picks his 41. seat." Mike comes into the front room and sits on the 42. couch. Dan is circle walking and seat picking. I'm in the 43. same spot as I usually am in Hse#2. Lome has toiletted 44. Tim and Tim hits the front room, circle walking, penis 45. holding and starts to run his patttern. Dan is circle 46. walking, which he doesn't do at Hse#2. April comes  PAGE#2  PROTOCOL #21  1. in naked again except for her sneakers. Tim is moving the 2. couch with Mike sitting on it. Dan does a very exagerrated 3. "air guitar." Tim moves the couch again with Mike still in it. 4. Mike is non-plussed. Tim pushes chairs. Dan spins and 5. shouts. Tim again moves the couch with Mike in it. Dan is 6. circle walking and "air guitaring" like crazy. April walks 7. thru on tip toes. Mike gets up and goes to the piano and 8. plays a few notes, then runs off. Tim picks up a stuffed 9. animal drops it, picks it up and drops it. He moves the arm 10. chair around. He runs circles. Dan & Tim are the only 11. two in the frontroom now. Tim circle walks and moves 12. the couch. Dan circle walks and does "whirling dervish." 13. April comes back in the frontroom and passes thru 14. without stopping. Lome has Dan follow him. Tim 15. continues to furniture move. Dan comes back in the front 16. room and does an incredible "whirling dervish" with a big 17. smile, one arm extended, the other arm in. June comes into 18. the front room but doesn't stay. Dan comes to the kitchen 19. window and circle walks. Tim pushes the couch hither and 20. yon. Val gets June to bring in two excercise mats, and they 21. both go for more mats. Debbie, Karen, Val, & Lome get 22. bowls of candy and go into the front room. June comes in 23. with two more mats. May sits on the couch in the front 24. room. Tim sits beside her and pushes her. She moves and 25. gets up. Tim pushes the couch around. June and Dan sit on 26. the mats. Then Mike is seated. Lome prompts May into 27. sitting on one. There is now a circle (see diagram). The 28. staff have 3 tennis balls, one basket ball, 2 beach balls. 29. Tim is the last one seated. April gets up and leaves and 30. is brought back by Val. The balls are then pushed between 31. the members of the circle. Candies and praise are given 32. when people participate. Tim pushs a ball, finger stares 33. and has a huge smile on his face. Lome rubs June, has her 34. push a ball, rubs her hair, says "Good Girl." April rolls. June 35. is finger staring. Debbie hand over hand has Dan roll a ball. 36. Mike gets up to retrieve a ball that has gone out of the 37. circle and throws it without looking, hits June in the head, but 38. instead of being upset she starts to laugh. Mike gets 39. another ball and takes it back to the circle. April throws a 9:20am 40. tennis ball that goes all the way into the dining room. June 41. gets a candy, this "game" goes on with candies, praise and 42. pats. Dan hand waves and "air guitars." Lome takes Mike 43. to the washroom. June gets up and follows Lome, I have 44. never seen her like and obey anyone like she does Lome. 45. The ball game ends at 9:50. I leave. <  APPENDIX D FLOOR PLAN OF GROUP HOME AND DAY PROGRAM  206  APPENDIX FLOOR PLAN  D  OF GROUP HOME AND DAY  Protocol #14: Tinvs Patterns, April  Staff Room  o  ciosbt RF  BR  BA  Sink  D  Bathroom Bedroom Closet Dryer Dining Table Refridgerator Shower Shelves Washer  Porch  ITIJ  W L a u n d r y Room  /  BA BR CL D DT RF SH SL W  CL  0  Porch  0  1987  Staff Room  Staff room  BA  13,  PROGRAM  Stove  Kitchen  Hall  BA  BR  


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