UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

The polyvocal fugue : frame and counter-frame in the management of an environmental health conflict Bassett, Beverly Raewyn 2002

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-ubc_2002-731286.pdf [ 18.49MB ]
Metadata
JSON: 831-1.0103828.json
JSON-LD: 831-1.0103828-ld.json
RDF/XML (Pretty): 831-1.0103828-rdf.xml
RDF/JSON: 831-1.0103828-rdf.json
Turtle: 831-1.0103828-turtle.txt
N-Triples: 831-1.0103828-rdf-ntriples.txt
Original Record: 831-1.0103828-source.json
Full Text
831-1.0103828-fulltext.txt
Citation
831-1.0103828.ris

Full Text

The Polyvocal Fugue: Frame and Counter-Frame in the Management of an Environmental Health Conflict by Beverley Raewyn Bassett B . A . (Hons) Massey University, N e w Zealand, 1986 M . A . Vic tor ia University, N e w Zealand, 1990 A T H E S I S S U B M I T T E D I N P A R T I A L F U L F I L L M E N T O F T H E R E Q U I R E M E N T S F O R T H E D E G R E E O F D O C T O R O F P H I L O S O P H Y in T H E F A C U L T Y O F G R A D U A T E S T U D I E S (Department o f Anthropology and Sociology) We accept this thesis as conforming to the required standard T H E U N I V E R S I T Y d F B R I T I S H C O L U M B I A 2002 ©Bever l ey Raewyn Bassett , 2 0 U 2 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of A n ft,^ p „ 0 ^ , The University of British Columbia I ' Vancouver, Canada D a t e Ay9fJ? 4.^0 DE-6 (2/88) Abstract It began w i t h the loss o f the use o f her forearm, then the use o f her other a rm, and then her legs. Headaches became severe migraines; seizures occurred. H e r body wasted away and she became needle-thin. A neurologist , a psychiatrist , her f ami ly phys i c i an c o u l d not determine what was wrong . A loca l specialist , however , recognized the symptoms as those he had seen i n others over several years. Conce rned that the symptoms might be related to envi ronmenta l toxins , he alerted the loca l health authorities. H i s concerns and those o f his patients were not taken ser iously, not, that is , un t i l he and his patients co ined a name for the symptoms: Somat ic C h e m i c a l l y Induced D y s f u n c t i o n Syndrome, or S C I D S . W h a t was expected to be s i m p l y a name for a set o f symptoms suddenly became contested. A socia l p rob lem was defined, and experts f rom Agr icu l tu re , Hea l th , and the Env i ronment Min i s t r i e s entered the fray. Unrela ted at first, degradation o f the loca l aquifer, death o f w i l d l i f e , and a not iceable decrease i n smal l m a m m a l s i n the area had been noted. Quest ions were raised about the l i n k s between the two; between the environment and health. Somat ic C h e m i c a l l y Induced D y s f u n c t i o n Syndrome ( S C I D S ) suggested a causal l i n k w i t h chemicals , moreover w i t h chemica l s i n the environment . T h i s raised doubts i n people ' s minds about the responsibi l i ty and accountabi l i ty o f government, and the authority o f experts and the role o f science was th rown into quest ion. A private trouble became a p u b l i c issue. The ensuing confl ic t r evo lved around naming and o w n i n g a soc ia l p rob lem. B o t h experts and persons w i t h S C I D S invoked science to make their case. Sides were drawn and the conf l ic t was p layed out to the wider pub l i c through the media . It has been commented that research about i l lnesses o f the environment have a bias towards the stories o f the sufferers. T h i s dissertation focuses ma in ly , though not exc lus ive ly , on the stories o f the var ious experts i n v o l v e d . Set w i t h i n the wider frame o f soc ia l const ruct ionism, I address the ways i n w h i c h private troubles become publ ic issues and are defined as a soc ia l p rob lem. The frames used i n this contest to wrest both ownership and thus management o f the p r o b l e m are investigated. The impact o f this on a loca l socia l movement is examined . I l l Table of Contents Abstract i i Table o f Contents i i i L i s t o f Tables v i i L i s t o f F igures v i i i A c k n o w l e d g m e n t s i x C H A P T E R O N E : C O M P O S I N G T H E S C O R E 1 Int roducing S C I D S 3 The S o c i a l Context 4 Problemat ic Diagnos t ics : Env i ronmen ta l Illness 14 C o l l e c t i v e Hys t e r i a 20 The dissertation 22 Subject/counter-subject, frame/counter-frame 22 B e c o m i n g the composer 27 C o n d u c t i n g the Fugue 29 C H A P T E R T W O : A R R A N G I N G T H E C O M P O S I T I O N : R E S E A R C H M E T H O D S 31 F i n d i n g the Theme(s) 32 A s s e m b l i n g the V o i c e s : Da ta C o l l e c t i o n 34 The news articles 34 In-depth interviews 35 Documents 37 V i d e o data 37 Tr iangula t ion o f data 38 Preparat ion o f data 38 G i v i n g V o i c e to the Themes: Da ta analysis 39 The benefits o f quali tat ive data analysis ( Q D A ) software 40 The disadvantages o f Q D A software 41 Poss ib i l i t i es 46 C H A P T E R T H R E E : S I T U A T I N G S C I D S 50 T o x i c C o m m u n i t i e s 51 A Theoret ica l B e g i n n i n g 55 S o c i a l M o v e m e n t s 57 Resource mob i l i z a t i on 58 N e w soc ia l movements 59 The tox ic waste movement 61 Env i ronmen ta l and Soc ia l Justice 63 The Exper ts 65 Ca lcu l a t i ng R i s k 67 Pe rce iv ing R i s k 69 Cons t ruc t ing R i s k 72 C o n c l u s i o n 74 C H A P T E R F O U R : B O D Y O F K N O W L E D G E : A S C I D S N A R R A T I V E 76 The S C I D S story 76 The diseased body 79 The body: f rom object to subject to object 80 The Po l i t i c s o f De f in i t i on 83 Diagnos i s 84 Se l f -He lp Groups 87 A c t i v e l y redefining the se l f 90 Nar ra t ing the self: Pract ical Ep i s temolog ies 91 Corporea l r i sk 94 Diagnos t ics : The inscr ibed body/the b e c o m i n g se l f 96 C H A P T E R F I V E : P U B L I C I Z I N G T H E F R A M E O R F R A M I N G T H E P U B L I C ? T H E M E D I A S T O R Y 98 F r o m Private Troubles to P u b l i c Issue 98 The M e d i a Narra t ive 99 V Private troubles to pub l i c issue 117 Env i ronmen ta l s i tuat ions/pol i t ical issues 118 C o m p e t i n g social problems 120 The rise and fa l l o f S C I D S 121 Compe t ing defini t ions 122 F r a m i n g 123 H e a d l i n i n g the event 125 Dramat ics : M e t a p h o r i c a l l y speaking 130 C o n f l i c t i n g Frames 132 C H A P T E R S I X : C O N T E S T E D O W N E R S H I P O F S C I D S : T H E E X P E R T S T O R Y 140 The experts ' story 142 The (dis)interested expert 149 The R e i g n o f Science: C l a i m s and Counterc la ims 151 Contes t ing C l a i m s 161 Conso l ida t ing the Coun te r - c l a im: The ep idemio log ica l study 163 B l i n d e d by facts 166 The Groundwater Research: D i s q u a l i f y i n g bias 169 F i l t e red Facts 173 M e t h o d o l o g i c a l C l a i m s - m a k i n g 174 The (dis)passionate expert 178 S i l enc ing 179 Mis t rus t o f experts 180 Return ing the Diagnos i s to the Patient: P u b l i c issues back to private troubles 181 C H A P T E R S E V E N : M A N A G I N G S C I D S : E M B E D D I N G A N D S E C U R I N G T H E S C I E N T I F I C / T E C H N I C A L F R A M E 184 E m b e d d i n g the Science F rame 185 Project Env i ro -Hea l t h : Secur ing the Science Frame 199 Purpose and Object ives 203 Structure o f Project E n v i r o - H e a l t h 203 vi Environmental Health Issues Identified 207 Research undertaken by Project Enviro-Health 211 Communication Strategies 212 Recommendations 214 Re-defining the problem 215 Defining Problems, Constructing Conflicts 217 Mistrust of experts 219 Differential knowledge 220 (Mis)perceptions 220 CHAPTER EIGHT: RISK BIOGRAPHY, RISK SOCIETY 224 Collective hysteria 224 A social movement? 227 Collective behaviour and its management 230 Cycles of Protest and Master Frames 235 Socio-historical factors 238 Risk Society 241 The Individuaf.Outside In 245 Individual symptom profiles, collective solutions 249 Back to the fugue 251 BIBLIOGRAPHY 253 Newspapers 279 Publicity brochures 280 Software cited 280 APPENDIX 1 :Ethics Committee Approval 282 APPENDIX 2:Description of Qualitative Software 284 APPENDIX 3:Data Analysis 287 v i i List of Tables Table 1. Character is t ics o f Def in i t ions o f M u l t i p l e C h e m i c a l Sensi t iv i ty 17 Table 2. M e t a p h o r i c a l descr ipt ion i n newspapers 133 Table 3. Types o f confl ic t , the resources and arguments l eg i t imized by each 134 Table 4: C o m p a r i n g f indings from the three reports 171 Table 5. S tudy we l l s i n Phase 1 and 2 w i t h pos i t ive pesticide detections 172 Table 6. S u m m a r y o f c l a ims-mak ing o f the different groups 176 Table 7. M e m b e r s h i p o f L o c a l Env i ronmenta l Hea l th A c t i o n Commit tees 205 Table 8. Env i ronmen ta l Hea l th Issues reported and investigated 208 Table 9. M a j o r environmental health concerns raised 209 Table A l . The changing shape o f the cod ing structure i n Q S R N U D * I S T : conceptual codes. . 289 Table A 2 . C o m p a r i s o n o f code development i n the two quali tat ive software 296 vii i List of Figures Figure 1. Typology of conditions and definitions 87 Figure 2: Private trouble to public issue 118 Figure 3: Private troubles and the environment constitute the SCIDS Conflict 119 Acknowledgments ix My thanks go to many people without whom this dissertation would never have been completed. Acknowledgments, written as text, are miserably inadequate alongside the generosity of the many people who helped me through this emotionally fraught yet intellectually stimulating process. Certainly without the ability of those below to stand by me in the last year or two of writing, the dissertation would have long ago been abandoned. Angela Fleury's understanding and clarity, while not always welcome at the time, kept me going, as did her resolve that I would finish. Jim Overboe listened when others wouldn't. Denise Nuttall came to Halifax and cooked curry hot enough to sweat out my doubts. Brenda Beagan's sage words provided stability in an emotionally fluctuating process. Marie Scagliola came upon an almost abandoned thesis and pulled it back from the brink. Janice Graham kept me on track and responded to most of my whining and petulance in her usual no-nonsense, "wake up and smell the coffee" manner. Derek Modry kept me inspired and forward-looking with his ANTics. Joy Horan came through with nutritional sustenance when I needed it most. Brian Elliott listened and advised through the various crises that accompany the dissertation process. A very big thanks must go to my immediate family for understanding a mother who would "abandon" them in New Zealand to pursue something as pretentious as a doctorate in Canada. Thanks to my committee, Brian Elliott, Ken Stoddart, Elvi Whittaker and Gillian Creese, who gave me the space and encouragement to think and write. As you begin you are alone, making notes, placing a line here, a piece of dialogue there. And then perhaps when you have a moment of doubt, because for instance the scene you have described is not quite right or strikes a false note, you shudder as you become aware of the others. A sea, an obdurate mass, a jeering crowd, disappointed with your feeble efforts. But you keep your nerve. You adjust the language. Shift the focus. Add complexity to the order of events. Until slowly, by almost imperceptible degrees, the gaze of the others no longer troubles you. Not because you are pleased with your efforts—you are still erasing, adding, altering—but because you have joined the audience yourself. Curious and attentive, you too are watching, eager to see how the plot proceeds. Griffin, Susan. 1999. What Her Body Thought: A Journey into the Shadows. San Francisco: HarperSanFrancisco. pi85. 1 C H A P T E R O N E : C O M P O S I N G T H E S C O R E R i s k . It has become a l u r k i n g presence o n the Canadian and the w o r l d news-scape, thrust into our minds against our w i l l . In B r i t a i n , Creutzfeldt-Jacob disease. In Canada , the W a l k e r t o n , Ontar io , groundwater tragedy. These brought i l lness and death that w e w o u l d have thought u n l i k e l y i n this modern age. N o w , the safety o f our basic needs for l i v i n g , food and water, are suspect, no longer to be trusted. H o w can w e te l l these necessities to our l ives are safe? W e no longer k n o w when we are at r isk. R i s k n o w has an unseen presence. R i s k used to have a different connotat ion. It was associated w i t h losses and gains, w i t h the ca lcu la t ion o f probabi l i t ies , as i n g a m b l i n g or undertaking some endeavour. T o d a y however , r i sk has taken on a negative connotat ion, that o f hazard or danger, w i t h a negative outcome. R i s k is the l i k e l i h o o d that a set o f circumstances w i l l cause harmful consequences. R i s k consists o f the magnitude o f harm and the probabi l i ty o f its occurrence. 1 G o n e are the days w h e n r i sk was forewarned and we c o u l d choose to a v o i d it. N o w w e even quest ion the trust p laced i n our elected representatives and their departments to protect us against r isk , or to warn us that such r i sk exists. E v e n the experts i n w h o m w e p laced the confidence that should accompany authority appear to have let us d o w n . Cer ta in ly r i sk- tak ing and r i sk-avoidance were considered the responsibi l i ty o f the i nd iv idua l . H o w do w e take responsibi l i ty now, not k n o w i n g what r isks w e are facing? H o w do w e deal w i t h this anxiety-r idden, stress-inducing uncertainty that the air we breathe, the food we eat and the water we dr ink contain r isks that are unheard, unfelt, unseen? H a v e we returned to the m i a s m i c horror o f the eighteenth century? O r is this a m i l l e n n i a l angst that is as contagious as any ep idemic? S u c h anxiety is a side-effect o f a r i sk society, suggests B e c k . Together w i t h the progress that was lauded w i t h industr ial p roduct ion was the systematic product ion o f r isk. A t first, as the latent effects o f product ion processes, r i sk appeared manageable, able to be phased out w i t h the e l imina t ion o f one product and its substi tution w i t h another. H o w e v e r , the p roduc t ion o f r i sk n o w 1 Rogers and Bates, 3; British Medical Association, 13; Fox, '"Risks', 'Hazards' and Life Choices," 665. escapes the institutions responsible for monitoring and protection, unable to be contained within the standards developed within industrial society. The threats of the risk society begin to predominate. Risks now are no longer discernible, not even to the imagination, and increasingly cannot be determined by science.2 In early 2000 in Walkerton, Ontario, Canada, contaminated groundwater was found to be the source of illness and death among the town's residents. Residents became i l l , and science determined that the groundwater was the source. An agri-business of intensified beef farming in the district, with leaching from manure into the groundwater, resulted in a devastating outcome for the community. Human error, and outdated technology were at fault. How could a glass of clear liquid, water, contain the elements of illness and death? A hazard, its existence unknown, became a risk, its existence still unknown. How did this glass of water, a commodity we expect to be able to take for granted as safe, become the grim reaper? Contrast Walkerton, Ontario, with another Canadian community, in the Fraser Valley in British Columbia, in which intensified farming of poultry, beef, and berries are the primary industries, where the residues of animal manure and pesticides leach into the groundwater, and where an increasing number of residents suffered a variety of neuromuscular symptoms. Whereas the effects of groundwater contamination in the Walkerton case occurred rapidly, were severe and life threatening and took on epidemic proportions, in the Fraser Valley, symptoms were progressive over a much longer period of time, were not immediately life threatening, and fewer people were affected. In Walkerton, contaminated groundwater was identified as the source of illness, and boil orders as well as an alternate water supply were relatively quickly put in place. In the Fraser Valley, the source of illness was contested, as was the illness itself. In Walkerton, residents suffered from a readily identifiable illness, with an etiology that is accepted by biomedicine. In the Fraser Valley, residents claimed they were suffering from an illness, but one not recognized by biomedicine. A n environmental illness, they maintained. 2 Beck, Reinvention of politics; idem, Risk Society; Beck, Giddens and Lash, Reflexive Modernization. 3 Introducing SCIDS In the early 1990's, newspaper headlines warned of contaminated groundwater in a small farming community in British Columbia. Abbotsford water contaminated, scientists claims Chicken manure has contaminated Abbotsford's drinking water, an Environment Canada scientist says. Nitrates from manure stockpiling, excessive fertilizing and septic tanks are leaching into the natural underground reservoir that provides the district with water, he told the B.C. Institute of Agrologists. [...] He said 60 per cent of the test wells drilled by the federal department last year near Abbotsford airport exceeded the allowable level of nitrates in drinking water in Canada— 10 parts per million. Another 20 per cent exceeded 20 parts per million or double the allowable limit. 3 A year or so later, headlines also told of an environmental disease linked to environmental toxins, possibly including those in the groundwater. Enviro-disease An environmental toxin may be the cause of a mysterious illness afflicting a number of people in the Fraser Valley. The disease with no name, and no known cause, stymies the brain's messages along the spinal cord, affecting normal joints and muscles.4 "Dubbed" cybernetic paresis by the local orthopaedic surgeon, he hypothesised that an exterior agent in the air or drinking water was damaging the central nervous system. In 1991, enviro-disease and cybernetic paresis were re-named SCIDS ( Somatic Chemically Induced Dysfunction Syndrome), and in August that year, a group of concerned residents, those suffering the symptoms of the enviro-disease, formed a SCIDS support group. Members of the group suffered a wide variety of symptoms, any two people not necessarily having the same complaints. Symptoms consisted of, in the teenaged, "knee pain and apparent muscle 'weakness'; lack of flexibility in the back; a particular pattern of muscle 'weakness' in upper and lower arms and 3 Larry McCallum, "Abbotsford water contaminated, scientist claims," The Vancouver Sun Friday, May 4, 1990. 4 Trudy Beyak, "Enviro-disease," The Abbotsford News, Wednesday August 21, 1991. legs; poor posture with head forward and shoulders stooping; excessive curvature in the lower back; hyper-sensitivity to pin pricks in the lower back; skin a doughy consistency and tender around the lower spinal region." In the 'middle-aged', symptoms presented were "constant aches in joints and bones; massive headaches; chronic fatigue; blurred vision; pins and needles in the arms, legs and back; spasm in most muscle groups; changes in digestive capabilities; irritable bowel conditions; constant thirst; and short-term memory lapses."5 Females were more often affected than males, as well as being affected at lower levels of exposure to chemicals than males. The local specialist observed a ratio of 4 females to 1 male in the population diagnosed at his clinic. 6 A number of diagnoses had been considered, but they did not fit the pattern for chronic fatigue, or fibromyalgia, or multiple sclerosis, although they did share some of the symptoms of each of those disease clusters. Having an unrecognized diagnosis, none of the group were eligible for compensation from the Workers Compensation Board. In fact, most people had been to more than one physician looking for answers, and it had been implied that for some of them their illness was all'in their head. A few people from the support group, SCIDS, became politically active and vocalized their concerns about the state of the environment and their symptoms, linking the two. Government at provincial and federal levels entered the fray, and debate about both the illness and the environment eventuated. The Social Context The ensuing conflict was centred in a river valley rich with alluvial soil just a few minutes north of the United States border. The Fraser Valley extends in triangular formation from the shores of the Pacific in British Columbia to the apex of the north and south mountains at approximately the town of Hope to the east. Abbotsford is at the centre of the river valley, set between the Fraser River to the north, and the United States border to the south. Previously two districts, Abbotsford and Matsqui merged, politically in 1995, but commercially much earlier as the expansion of both resulted in the convergence of the two central business districts in the early 1992. 5 Trudy Beyak, "Enviro-disease," The Abbotsford News, Wednesday August 21, 1991. 6 Trudy Beyak, "Females more affected," Abbotsford/Matsqui & Mission News, February 15, 5 1990s.7 Settlement patterns have matched resources in the area. Some five thousand years ago the Sto:lo nation were established in the region, sustained by the extraordinary abundance of salmon in the river and the wealth of game and plant life in the forests. It was not until relatively recently, the early nineteenth century, that the fur trade brought Europeans to the district. The river, a telegraph trail, a gold trail from the United States into British Columbia, and the construction of the Canadian Pacific Rail link furthered settlement. The British government, concerned at the increasing American presence in the area, especially following the gold rushes, sent a corps of engineers in the late nineteenth century who were responsible for surveying the lower mainland and many of whom settled in what was to become Abbotsford. The landscape of the area at the time was described by one of the engineers as a sweeping prairie, with many marshes and towering stands of forest, abundant with fowl and wild game.8 Logging was the main industry in the early 1900s, attracting Sikhs as well as Europeans to settle.9 Other groups had previously settled in the Abbotsford region, however a paucity of information about their settlement exists. It is the negative references to some groups that indicate their presence; for example, the Chinese were settled there, evident from the anti-Oriental sentiment expressed at the time about the "Chinese drug problem." The town's newspaper, The News, published statistics portraying the Chinese as the main traffickers of opium and morphine, the use of which was reported to be rising rapidly in the district.10 By the 1930s, newspapers and even Maclean's magazine were carrying fearful stories of Japanese settlement and 'takeover' allegedly at the instigation of the Japanese government. Prosperity from the lumber industry encouraged a small business district to develop by the early 1900s, providing both necessities, such as a grocery store, banks and dentists, as well as recreational facilities which included a movie theatre and restaurants. The Abbotsford and 7 Abbotsford: A City in the Country. 1996/97, 5 8 Peters, 3. 9 Farrow, 5. 10 «r j r u g S a n d t n e Oriental Menace," M. S. A. News November 29, 1923, quoted in Peters 1983, 28; Farrow, 8. 6 District Chamber of Commerce was established in 1913, and Abbotsford was incorporated in 1924. This was much later than neighbouring Matsqui and Sumas municipalities, both of which had been incorporated in 1892." With the Depression of the late 1920s and 1930s and the lumber industry failure, economic dependence shifted to agriculture. The fertile soil had already attracted farmers to the district. A dyke system had been built in the late 1800s to re-channel the Vedder river, the source of many a flood, defeating farming efforts. This infrastructure together with logging operations which had helped pave the way for further farming by clearing the land of trees, reduced the extent of the catastrophe that the collapse of the logging industry might have had.1 2 In 1932, the Abbotsford Chamber of Commerce brochure was titled Abbotsford: The Land of the Cow, signifying the shift from logging to farming at that time.13 Early farmers were predominantly horticulturalists, growing an assortment of crops which included hops, tobacco, beets, fruit and vegetables. At the turn of the century, dairy farming increased and operated alongside horticultural farming. Berry farming was introduced in the early 1900s. Strawberries and raspberries flourished in the hot, wet, short summers where peaches and apricots did not. In the 1920's the local berry farmers formed the Abbotsford District Fruit Growers & Co-operative Association.14 With the change in economy came an influx of new settlers.15 The Mennonites had migrated from the Prairies in the early twentieth century and became established in berry and dairy farming. Dutch immigrants who arrived after World War Two were predominantly concentrated in dairy farming and Hungarians who settled to the east of the Valley harvested hops and tobacco. Further Sikh immigrants arrived in the 1960s; and in the 1970s and 80s, Cambodian, Vietnamese, and Laotian refugees arrived.16 Currently, prosperity continues to be 1 1 Peters, 4-27. 1 2 Ibid. 1 3 Farrow, 1 & 10. 1 4 Farrow, 7-17. 1 5 Ibid. 1 6 Peters, 29; Farrow, 10 & 11. 7 based on agricultural produce.17 Population in Abbotsford in 1991, at the time of the escalating conflict around SCIDS, was 86,930. Twenty-one percent of the population were of British descent, 13 percent of German descent, and 38 percent of multi-ethnic origin. While some of the Matsqui-Abbotsford population (20%) list no religious affiliation on their 1991 Census return, of those declaring their religion, 13 percent were Mennonite, 11 percent Roman Catholic, 10 percent United Church, and 6 percent Anglican with another 6 percent Sikb.. As part of what has been referred to as the "bible belt," the district has many places to worship (77 in 1994), some of them capable of holding large congregations. For example, two churches have auditoria that will seat 2000 people at a time. The average congregation size is 500, with the largest church having a congregation of 4000.18 The majority of families in the district in 1991 were two-parent families (90%). Eighteen percent of families in the Central Fraser Valley Regional District, which is primarily comprised of Matsqui and Abbotsford, earned $70,000 and over, while 45 percent of families earned between $20,000 and $49,999.19 Prior to 1991, education levels were low. In 1981, less than 26 percent of the population had greater than a grade 9 education in Abbotsford. This was even lower in neighbouring Matsqui. This has changed somewhat since 1991, with more students graduating, and more with post-secondary, college-level education. Economic diversification has contributed to an increase in work outside the agricultural sector, traditionally a sector that has not required high education levels.20 Today, the city of Abbotsford is the organizational centre for the rural surrounds. There is a growing commercial sector based on manufacturing, processing, transportation, construction, and trades and services industries. The continuing importance of agriculture to the region is not just economic, but symbolic. It is at the core of a carefully constituted collective identity. This can be seen in the portrayal of community identity in publicity brochures and in the public events 17 City of Abbotsford Economic Profile 1996. 1 8 Simpson and Elliott, 129. 19 City of Abbotsford Economic Profde, 1996. 2 0 Simpson and Elliott, 129 & 130. 8 to which the outside world is invited. The annual publication of the Abbotsford Chamber of Commerce, Abbotsford: City in the Country, heavily emphasizes the rural farming community together with the regional prosperity from the legacy of agricultural production. A B B O T S F O R D - M A T S Q U I : The Best o f Both Worlds Absorbed in the beauty and tranquillity o f the countryside, it is often difficult to imagine Abbotsford-Matsqui as one of the fastest growing communities in North America . But it 's very true according to the Abbotsford-Matsqui Chamber o f Commerce, noting that this community is quickly becoming a leading business centre in the Lower Mainland. The Chamber prides the community on its ability to capture and preserve the splendor o f its beautiful prairies, rol l ing hills and meandering rivers/streams, while offering the conveniences o f the b ig city with luxurious residential development, large commercial complexes and lucrative industrial enterprises just a stones throw away. 2 1 Brochure photographs of the tranquil outdoors of this lake or that mountain reveal the region's beauty. Farm visits, hiking and walking trails and many outdoor activities are the focus.22 Abbotsford's public events predominantly continue the rural emphasis. Three events in particular, the Berry Festival and the Agrifair highlighting the rural, and the Abbotsford International Airshow profiling the urban side of the region, are provided the most publicity in the Chamber of Commerce publications. The Abbotsford Berry Festival is an event upon which the city prides itself. A regular street festival for the past fifteen years, it is advertised as a family event. Offerings of free entertainment which include parades, shows, and sales as well as "berry-indulgent" food items set this festival apart from others. Abbotsford is known as the Raspberry Capital of Canada, and is the second largest raspberry producer in North America. The Lower Fraser Valley supplies ninety percent of all raspberries used in Canada.23 2 1 Roxanne Rake, "ABBOTSFORD-MATSQUI: The Best of Both Worlds" Abbotsford Matsqui: A City in the Country. Rainbow Communications for the Abbotsford-Matsqui Chamber of Commerce, 1994. 22 Abbotsford Matsqui Visitors Guide. 1993-4, 9; Abbotsford: A City in the Country. 1996/97', 3. 23 ' Abbotsford: A City in the Country. 1996/97, 6. The Abbo t s fo rd A g r i f a i r is advertised as the Best L i t t l e Coun t ry Fa i r . It is a regular agr icul tural show, parading the best i n agr icul tural products the reg ion has to offer. A n i m a l s , food and entertainment, and both r i d ing events and amusement rides constitute this f ami ly fair . 2 4 Contrasted w i t h the two major agricul tural shows is the A b b o t s f o r d International A i r s h o w . It too is a major v is i tor attraction, advertised as a wor ld - renowned experience. It has been reported as the fifth largest a i r show i n the w o r l d . Aeroba t ic feats, aircraft d i sp lays and var ious a i r show performers are advertised each year. A n annual event, it is augmented i n the week pr io r by another a i rshow festival ca l l ed "The F l igh t B e g i n s " i n w h i c h l oca l businesses take part i n the aeronautical theme w i t h a var iety o f displays and competi t ions. E a c h second year another fest ival occurs i n conjunct ion w i t h these two , A i r s h o w Canada , a t radeshow and s y m p o s i u m o f aeronautical giants f rom around the w o r l d . " K i d s ' y o u n g and o l d ' " are encouraged to par t ic ipate . 2 5 Th i s event, wh i l s t obv ious ly requir ing the airspace the countryside provides , promotes the prosperous and f lour i sh ing "c i tys ide" identity o f A b b o t s f o r d business and trade. The overa l l image is one o f a modern , urbanized communi ty enveloped i n and surrounded by nature. Imp l i c i t i n this image is one o f health. Coup le that w i t h the wea l th that eminates f rom a ci ty w i t h an economy based o n divers i f ied agricul tural products, and a co l l ec t ive image o f health and wea l th is presented—the c i ty i n the country. The suggestion that there might be i l lness induced by the same industries upon w h i c h the region 's prosperity rested was shock ing . A n d yet it was not entirely unpredicted. C o n c e r n w i t h the degradation o f the environment generally had been steadily increasing through the 1980s and 1990s. A i r po l lu t ion , funneled f rom Greater V a n c o u v e r and W h a t c o m Coun ty ( U S ) , was becoming a major p rob lem. The Fraser V a l l e y was reported as hav ing one o f the three wors t concentrations o f ground l eve l ozone i n C a n a d a . 2 6 Groundwater p o l l u t i o n was Abbotsford: A City in the Country. 1996/97, 21; City of Abbotsford Economic Profile, February 1996, 14. 25 Abbotsford: A City in the Country. 1996/97,11 &16; City of Abbotsford Economic Profile, February, 1996, 14. 2 6 Jason Proctor, "Vancouver air blamed for asthma," The Province, July 04, 1994, sec. A. p.6. 10 also a p rob lem. The Env i ronmen t Commit tee o f the A s s o c i a t i o n o f Professional Engineers and Geoscientis ts o f B r i t i s h C o l u m b i a had, i n the 1980s, sent several miss ives to the p r o v i n c i a l government ou t l in ing the problemat ic practices o f l o c a l farmers and consequent groundwater con tamina t ion . 2 7 B e t w e e n 1984 and 1990, Env i ronmen t Canada , the Na t iona l Research Institute, and Agr i cu l tu re Canada scientists had found the A b b o t s f o r d aquifer contaminated w i t h nitrates and l o w levels o f pes t ic ides . 2 8 Farmers and farm workers i n the region surveyed i n 1982 reported suffering the immediate effects o f m i l d to moderate pesticide p o i s o n i n g . 2 9 A report f rom the C a n a d i a n Farmworke r s ' U n i o n , M a y 1990, Pesticide Use and Handling in the Fraser Valley Berry Industry,™ pointed out that the processes i n place to ensure safety at the farm leve l were f l awed . Re l i ance was heav i ly concentrated on label ing o f pest icides, w h i c h were i n E n g l i s h language. M a n y farmworkers as w e l l as farmers were ill i terate i n E n g l i s h . L e v e l s o f pest icide app l ica t ion t ra ining and cert i f icat ion were found to be l o w , standardized record keeping was non-existent, and regulatory presence o n farms was l ack ing . A t a more general l eve l , degradation o f the environment was noted. W h i l e the l oca l orthopaedic surgeon had noted i n 1991 i n his address to the newly formed S C I D S group that w i l d l i f e was disappearing, this theme was the subject o f newspaper articles i n 1992. A member o f the A s s o c i a t i o n o f Rep t i l e Keepers stated that whereas 30 years ago she cou ld immedia te ly f ind a garter snake i n her backyard , for the past 15 years this had not been so. The disappearance or rapid decl ine o f species o f frogs, salamanders and snakes i n the reg ion were noted by spokespersons for the Z o o l o g y M u s e u m at the U n i v e r s i t y o f B r i t i s h C o l u m b i a and the Conserva t ion D a t a Centre o f the M i n i s t r y o f E n v i r o m e n t . 3 1 D e c l i n e i n hummingb i rds , increasing 2 7 Trudy Beyak, "Pesticides are in groundwater," The News. October 23, 1991, sec. A l ; Ellen Saenger, "Searching for answers," British Columbia Report. November 11, 1991:30. 2 8 Trudy Beyak, "No tests for cheaper pesticide," Abbotsford/Matsqui News. September 02, 1992, sec. A. p.2. 2 9 Trudy Beyak, "Farmworkers poisoned by pesticides," The News. November 13, 1991. 3 0 Report prepared by Juri Oja, David Riehm, and Aleck Ostry with the assistance of Robert Milen, Gurwinder Uppal and Gurmail Brar. 3 1 Trudy Beyak, "Wildlife quietly disappearing," The News Wednesday, January 08, 1992, sec. A l . 11 numbers of deaths in bald eagles and other species of eagles, hawks, and falcons were reported by a Canadian Wildlife Service scientist and a Chilliwack field naturalist who had kept records on Fraser Valley birds since 1977. Cause of these deaths and declines is posited as increased use of pesticides. Wildlife service logs 20 years of birds falling prey to pesticides The Canadian Wild l i fe Service has a two-decade history of confirmed pesticide poisonings o f birds in the lower Fraser Val ley . For example, in December 1979, a pesticide ki l led 120 ducks; in August 1989, another pesticide poisoned 40 Canada geese. During the 1980s, the largest bi rd k i l l in the valley from a single pesticide poisoning was the previously unpublished death o f an estimated 1,000 sparrows in August 1986. [...] Government records show instances o f large numbers o f pesticide-killed ducks and other water fowl in a single farm field, but birds o f prey die alone. 3 2 This underbelly of the bucolic environment is hidden as much as possible from wider public view by those advertising the region and hoping to attract new business, industry and residents. The city in the country is not about contamination, pollution, pesticides and poisoning. A group exposing this underbelly would be challenged locally and regionally by those with vested interests. Their claims would be resisted and denied by powerful elements in the community—elements that were invested in the image of Abbotsford as a safe, prosperous place. Others, including residents, just did not want to know. In an investigation in the Valley as to why, in the face of concern for the environment, so few people behave in ways that would protect the environment, Simpson concluded that although most people were concerned about their local environment and support environmental issues, this concern was not sufficient to motivate environmental activism, lifestyle change or a shift in attitude/belief from economic to environmental sustainability.33 Earlier research by Blake et al had similarly found British Columbians concerned about the environment. They also found 3 2 Glenn Bohn, "Poisoned wildlife reveals pesticide peril in valley," The Vancouver Sun Friday, January 24, 1992. Sec. B. p.5. 3 3 Simpson, 291-294. 12 residents o f B r i t i s h C o l u m b i a ( B . C . ) to be active participants i n s imple energy sav ing and r ecyc l ing programs as w e l l as passive actors who contributed monetar i ly , s igned peti t ions or boycot ted products i n relat ion to environmental concerns. W o m e n were more concerned about the environment than men , as were the middle-aged i n B . C . A t the l oca l l eve l , the objective condi t ion o f the environment , especial ly related to its v i s i b i l i t y , was the determinant o f concern. A i r po l lu t ion , especia l ly f rom cars, was more l i k e l y to raise concern than the less v i s i b l e or geographical ly remote condi t ions such as ozone deple t ion . 3 4 H o w e v e r , even though di rect ly affected by p o l l u t i o n and rank ing po l lu t i on as a significant p rob lem, a later survey found that ind iv idua l s do not necessari ly support solutions that are a more serious attempt to solve these problems. Residents o f Abbo t s fo rd , an oversample i n a representative survey o f 1,652 r andomly selected respondents i n B . C . ranked motor vehic le exhaust p o l l u t i o n and air qual i ty as their major environmental concerns (numbers one and two respectively) yet were less l i k e l y than respondents f rom B . C . general ly to support i nd iv idua l i zed penalty measures to combat it. Abbo t s fo rd is the major recipient o f motor vehic le exhaust po l lu t i on f rom the L o w e r M a i n l a n d . 3 5 Other research however has found that al though ind iv idua ls feel they have some personal cont ro l over their health and over some environmental activit ies such as household r ecyc l i ng , they do not feel that they have a lot o f i nd iv idua l control over the environment. In fact, it is be l i eved that to change the cond i t ion o f the environment, group act ion is necessary. H o w e v e r , apparently even where health is seen as l i n k e d to a deteriorating environment, i n d i v i d u a l responsib i l i ty for group membership and ac t iv i sm m a y be l ack ing . A t environmental group meetings attended by Department o f S o c i o l o g y faculty and graduate students i n 1993 as part o f an Eco-Resea rch Project being conducted by the U n i v e r s i t y o f B r i t i s h C o l u m b i a , c o m m u n i t y apathy was a c o m m o n theme. Toward the end o f the meeting Brian [Elliott] asked about the community apathy members had been referring to. He asked i f they thought this community is different in this respect than other communities. In the wide-ranging discussion that fol lwed it seemed that people thought there was more apathy Blake, Guppy and Urmetzer, 41-61. Urmetzer, Blake and Guppy, 345-359. 13 than in other communities (such as those on the Island where some members had lived), and disagreed on what the explanation of the apathy was. One member thought it was because people are so busy these days with two incomes needed by a family; another thought that was not an explanation because many of the people who are involved are very busy too; another member said that there are three groups in the community: the ethnic group, the non-religious, and the religious. The religious people in the community are scared because their influence is reduced from what it used to be (he may have been implying that no group has taken the place of the religious groups' informal influence and activity, but he did not in fact say this).3 6 In an earlier in te rv iew (October 08, 1993) w i t h The Abbotsford News reporter for the environment , researchers' had heard the same concerns about commun i ty invo lvemen t w i t h environmental issues. The reporter commented "that there was m u c h apathy" and that " i t was real ly dead i n terms o f pub l i c response to p rob lems . " 3 7 In a compar i son o f c o m m u n i t y environmenta l ac t i v i sm i n four L o w e r M a i n l a n d munic ipa l i t i es , Burnaby , R i c h m o n d , L a n g l e y , and Abbo t s fo rd , M c K i n n o n found the Abbo t s fo rd groups to be smaller and less inf luent ia l than those o f the other munic ipa l i t ies , nor had they developed an independent and self-reliant ' envi ronmenta l pub l i c sphere'. A n environmental pub l i c sphere consists o f a ne twork o f groups, considered necessary for the maintenance and cont inuat ion o f environmental ac t iv i sm. It provides a p la t form from w h i c h groups can "take-off ." 3 8 Despi te the fact that this was a communi ty w h i c h pr ided i t se l f o n its natural, rural resources, w i t h an image o f a clean, green, healthy environment f rom w h i c h s temmed its weal th , i n w h i c h ind iv idua l s were less l i k e l y to be envi ronmenta l ly act ive and w i t h a weak environmenta l pub l ic sphere, environmental i l lness surfaced here and group ac t i v i sm emerged. Alldritt , Fieldnotes, November 09, 1993. Alldrit t , Fieldnotes, October 08, 1993. Brian Elliott also present. M c K i n n o n , 81-109. 14 Problematic Diagnostics: Environmental Illness Nei ther a case def in i t ion nor methods acceptable to the b iomed ica l c o m m u n i t y exist for ver i fy ing the entity o f envi ronmenta l ly caused i l lness . Discourses and counter discourses have been waged about environmental i l lness i n the scientif ic and med ica l literature, i n the med ia , i n professional associat ion pos i t ion statements, and i n the courts for at least the past decade. Env i ronmen ta l i l lness (EI) is an umbre l l a term for a co l l ec t ion o f syndromes w h i c h include G u l f W a r syndrome, mul t ip le chemica l sensi t ivi ty syndrome, chronic fatigue syndrome, 20th century disease, enviro-disease, total a l lergy syndrome and many others. A l t h o u g h each o f these syndromic names is used interchangeably i n the literature, I a m go ing to focus i n this b r i e f section on the d iscuss ion around mul t ip l e chemica l sensi t ivi ty as it is the term closest to S C I D S , the subject o f this dissertation. The under ly ing concepts o f mul t ip le chemica l sensi t ivi ty were developed by al lergist The ron G . R a n d o l p h , M . D . i n the 1940s. H e suggested that exposure to substances at doses far lower than levels no rma l ly considered safe caused fatigue, i r r i tabi l i ty , behaviour problems , depression, confus ion and nervous tension i n some people. Th i s new fo rm o f sensi t ivi ty represented a failure o f humans to adapt to modern day synthetic chemicals , he suggested. 3 9 M u l t i p l e chemica l sensi t ivi ty is diagnosed and treated predominant ly by a group o f c l in ic ians w h o are c l i n i c a l ecologists . C l i n i c a l ecology is not a recognised med ica l specia l i ty , and l ies outside the b iomed ica l m o d e l . In 1965, a group o f c l in ic ians f rom var ious special i t ies banded together to fo rm a med ica l society, the A m e r i c a n A c a d e m y o f Env i ronmen ta l M e d i c i n e ( A A E M ) . Cons ide red a strategically comprehensive, proactive and preventive approach to med ica l care accord ing to the A A E M , environmental medic ine focusses o n evaluat ing, managing, and prevent ing the adverse effects result ing f rom environmenta l ly tr iggered i l lnesses. The A A E M ' s pos i t ion is that the human body is constantly cop ing w i t h the dynamic environment i n w h i c h it is situated through inherited, c o m p l e x l y interacting and reversible 3 9 Randolph practiced in Chicago and was also on the staff at Northwestern University Medical School and two affiliated hospitals. Following his suggestion that chemical sensitivity was an inability of humans to adapt to the modern age, he lost his medical school and affiliated hospital positions, being declared "a pernicious influence on medical students" (Barrett and Gots, 5 & 6). 15 biologic mechanisms and systems. Substances in the diet or environment are potential stressors capable of destabilizing "homeodynamic functions" and thereby causing disease. Homeodynamic functioning refers to an active (rather than passive) process of health and function maintenance.40 Located outside the biomedical mainstream, diagnosis and treatment by clinical ecologists is the subject of much criticism. Multiple chemical sensitivity is not a diagnosis listed in medical text books, nor is it classified as a medical condition in the standard manual, International Classification of Diseases, Ninth Edition, Clinical Modification (ICD-9-CM). According to critics of clinical ecology, there is no clear definition of multiple chemical sensitivity. There is a lack of elucidation of potentially contributing pathophysiologic and psychologic mechanisms, no substantiated diagnostic tests, and no scientific validation for any single case. Multiple chemical sensitivity is considered a label, rather than a diagnosis, by those within the biomedical tradition. Further, critics claim that interpretation of published research on multiple chemical sensitivity is limited by methodological problems. These include over-reliance on survey method, on self-reported symptoms, selection bias, blinding issues, inconsistent laboratory quality assurance, and lack of validation of outcome measures. The American College of Occupational and Environmental Medicine (ACOEM) in their position statement on multiple chemical sensitivities recommends that "idiopathic environmental intolerance" (IEI) more accurately reflects the current state of knowledge and eliminates the inference of immunologic dysfunction and chemical exposure that is sine qua non in the term "multiple chemical sensitivity."41 "Multiple chemical sensitivity," was coined by Michael Cullen, M.D. , professor of occupational medicine at Yale University. He does not identify as a clinical ecologist. Acknowledging the difficulty in defining the syndrome, and mindful of the need to do so, various 4 0 American Academy of Environmental Medicine Home Page (AAEM) <http://www.aaem.com/who_we_are.htm> accessed April 07, 2001; Barrett and Gots, 7. 41American College of Occupational and Environmental Medicine (ACOEM) position statement on multiple chemical sensitivities, <http://www.acoem.org/paprguid/papers/mcs.htm> accessed April 07, 2001; Barrett and Gots, 7. 16 commit tees and consensus groups have attempted to develop an encompass ing def in i t ion . Characteris t ics o f these defini t ions can be found i n Table 1. B i o l o g i c a l markers for diagnost ic purposes have also been the subject o f research. Heuser , W o j d a n i and Heuser (1992) evaluated 135 patients effected by smal l concentrations o f mu l t i p l e chemicals after a previous event o f 6hemical exposure and suggested that abnormal i ty i n four o f seven systems tested (central nervous system, peripheral nervous system, nose and sinuses, pu lmonary function, T - c e l l subsets, chemica l antibodies and auto- immuni ty) be ind ica t ive o f a diagnosis o f M C S . C u m u l a t i v e data f rom an increasing number o f studies p rov ide support for the importance o f three groups o f symptoms: those predominat ing i n the central nervous system and cons is t ing of, for example , fatigue, headache, d izz iness , loss o f memory , sleeplessness; those categorized as i r r i ta t ional symptoms, i nc lud ing nasal congestion, asthma, eczema, s k i n rashes, i t ch ing eyes; and those that are gastrointestinal symptoms such as nausea, diarrhoea, const ipat ion, b loa t ing and c ramps . 4 2 Symptoms are chronic and recurrent, w i t h progress ively smaller amounts o f a w i d e n i n g array o f incitants p r o v o k i n g symptoms. Cosme t i c fragrances, body care products, c leaning products, air fresheners, fresh paint, adhesives, n e w construct ion materials and carpeting, office machinery , automobi le exhaust, tobacco smoke, food addit ives, moulds , and pesticides are the most c o m m o n incitants. V a r y i n g degrees o f morb id i ty are experienced b y ind iv idua l s . F o r some, total d i sab i l i ty i n relat ion to car ry ing o n the normal activit ies o f contemporary, urbanized, everyday l ife is the result. V o l u n t a r y restrictions to l ifestyle i n order to l i m i t contact w i t h suspected substances are extremely disrupt ive and constraining to the i n d i v i d u a l ' s socia l and economic l i f e . 4 3 Despite the se l f - imposed restrictions, some studies have s h o w n that none o f the participants associated the restrictions w i t h feel ing better. 4 4 The l o w levels o f chemica l exposure that are reported as t r iggering symptoms raise 4 2 Kilburn, 4 & 5. 4 3 Lipson, 103-116; Szarek, Bell, and Schwartz, 345; Nethercott et al, 19 & 20; G. Heuser, A. Wojdani, and S. Heuser, 117-138. 4 4 Lax and Henneberger, 429. 5 5 ~2 •= =5 O Ov w —i >, „, OS . 3 O- — g1 « _ - _ s" 3 > •5 = 'E S 5 tf'S K •€ E 5 8 " O = J=: 2 ' c . 0). •= v = 5 2 £ id I (/) -O — .c — - '• o c .3 — sc o . 2 -J £• -•=• £ 3 P ' — .S3 O O , 2 E = L ^- — E _. E > 5 S I 5 ^ §.2 £ -' " X~Q O o > o 3 -a o O a. •a c o o e o is o o is c o £ 3 •> ° > o. > *> 9 E S 2 . S § CX g • S 5> &8 CN 00 oo vT Goi Goi ;ott et al Goi and and ;ott et al and -rett Ibid. -rett then -rett Bai Ibid. Bai Z Bai v© r-- oo o .O I—I - co g c/5 a> S> « * r c — > 0) CO 5 -2 c O cS t/i a. — a o av ov 3 o o o •"S -~i ~3 c M M O E > o d a. CO' . £ E -J 8 E = .= T : .2 i ZJ • — T-( 'v.'-c u e * ! < < U J 2 s> s> S> — c- -o - c g •-3 5 l-S- E l °w w CO P <U c CO t« " O ,2 x: s- S-— o .2 ' O p cj « « P 1 / 3 " Z £ U J I —=; .,, s. s» S 3 S 'J — -P / o s> 1 te. CO — s> S» S> '-P. p-• • — OO - s. s. ° p -<r c 'ON v.t=-.x: « fe o " p h i ; i= 1 1 S i g£* : w _ = C Z c s. s> S» S S •> multiple chemically unrelated substance response polysymptomatic multi-system symptoms involve central nervous system individual susceptibility varying degrees of morbidity, from mild discomfort to total disability symptoms recur/abate to predictable stimuli no accepted test of physiological function length of time of exposure chemical and pharmocological nature of toxin American Kin ironmcntul Medicine c — c- --p -, — A ' J r3 — * &»>-3 •£ • <u .B" c .ti 2 =i — ' ~ = 7. . w +-; Cd P "P CJ r-.-Z ^  I U 2 u ai a a p c C P "S3 «J c ^ , o 3 .b |+3 ^j. > cd f>\ « _ P « O N Z £ tu I — S-S'g; — o-- P — • cd ~ 5 <- 1 J * ? ;e£ cd —< P « r-— =>o — c O -§ B > £ .« £ o o 7 - • - — .1 1 1 S ? f = i - o - != S;.p o , o « _• 5 p ~ = C — = —• C o amount and variety of other body stressors (total load) and synergism at time of reaction derangement of metabolism from initial insults frequency/severity of symptoms worse with subsequent exposure 20 scept ic ism about the causal relat ionship between exposure and symptoms. M u l t i p l e chemica l sensi t ivi ty has been somewhat ac r imonious ly described as perhaps "the on ly ai lment i n w h i c h the patient defines both the cause and the manifestations o f his (sic!) o w n c o n d i t i o n . " 5 2 A C O E M , cr i t ica l o f both c l i n i c a l eco logy and "po lemic and soc ia l ac t i v i sm o f groups representing the spectrum o f o p i n i o n about mul t ip le chemica l sens i t iv i ty ," i n its pos i t ion statement o f June 08, 1999, concedes "that data have n o w accumulated that supports some tentative conclus ions about mul t ip le chemica l sensi t iv i ty ." These include strong support against an i m m u n o l o g i c a l basis; and over lap between mul t ip le chemica l sensi t ivi ty, chronic fatigue syndrome, f ib romyalg ia , and other non-specif ic condi t ions . There is support for an excess o f p remorb id somatic complaints i n some mul t ip le chemica l sensi t ivi ty patients and an e t io logic role for condi t ioned response. Prevalence o f pre-exis t ing and concurrent psychia t r ic disease remains h igh ly c o n t r o v e r s i a l . 5 3 Collective Hysteria Envi ronmen ta l i l lness has been described as a "pecul iar manifestat ion o f our technophobic and chemophobic society ." T h i s popular appeal is said to be rooted i n widespread fear o f chemicals , distrust o f science, medic ine , technology and government, wor ry about the environment , and a mindset o f v i c t i m i z a t i o n . 5 4 It is manifested as hysteria, some have suggested. 5 5 M a s s hysteria is said to exist today i n the shape o f syndromes such as mul t ip le chemica l sensi t ivi ty, chronic fatigue syndrome and G u l f W a r syndrome. The angst that accompanies m i l l e n n i a l change has been condensed into specific b o d i l y condi t ions . W h i l s t the causes o f such condit ions are cul tural , symptoms are experienced as p sycho log ica l pa in and discomfort w i t h no c l i n i c a l explanat ion. Dispersa l mechanisms are the mass media , te lecommunicat ions , and electronic m a i l . Requis i te condit ions for the emergence o f an hyster ical 5 2 Barrett and Gots, 111. 5 3 American College of Occupational and Environmental Medicine (ACOEM) position statement on multiple chemical sensitivities, <http://www.acoem.org/paprguid/papers/mcs.htm> accessed April 07, 2001. 5 4 Barrett and Gots, 111. 5 5 Showalter, Hystories, quoted in Hatty and Hatty, 239 & 240. 21 response include a medical practitioner or other authorized knower, who defines, names and publicizes a disorder; a vulnerable individual reporting vague symptoms, who learns o f the disorder and begins to believe she is suffering from it; and a cultural environment, complete with self-help books, confessional television shows, and the Internet, to spread information about the new disorder and that feed the cycle o f it 's growth. 5 6 A n apparent hyster ical response that met these cri teria occurred i n the Fraser V a l l e y i n B r i t i s h C o l u m b i a , and was described by L e i s s and C h o c i o l k o . 5 7 They beg in w i t h the f o l l o w i n g descr ipt ion: In late 1991 public hysteria about allegations o f toxic substances (pesticides) contaminating water supplies spread through some Fraser Val ley communities in Bri t ish Columbia . The o r i g i n o f this pub l i c fear, they continue, was a diagnosis by a loca l p h y s i c i a n o f pest ic ide residues or ig inat ing i n contaminated groundwater. The residues were described as l o d g i n g i n people ' s bodies and affecting the central nervous system. C o m m o n l y referred to as "cluster disease" by the d iagnos ing phys i c i an because a number o f patients w i t h symptoms resided i n contiguous areas, he gave it the med ica l def in i t ion o f cybernetic paresis. Fear o f this disease spread through the commun i ty , fanned further by the activit ies o f a loca l group o f residents. The M i n i s t r i e s o f Hea l th and Env i ronmen t ac t ive ly responded to these concerns. A l t h o u g h a team o f U n i v e r s i t y o f B r i t i s h C o l u m b i a epidemiologis ts investigated the syndrome, l oca l residents brought i n their o w n "expert" f rom F l o r i d a . The "a la rming statements" made by the residents ' expert f o l l o w i n g his analysis o f water samples, undertaken i n an "as tonishingly short t ime , " c o u l d not be corroborated w i t h independent p r o o f o f the toxins c l a imed to be present i n the environment, L e i s s and C h o c i o l k o wri te . B o t h the phys ic ian ' s diagnosis and the F l o r i d a expert 's allegations were "ent i rely unfounded." The hyster ia dissipated over t ime. Ibid. Leiss and Chociolko, 267. 22 The dissertation This dissertation challenges Leiss' and Chociolko's version of what became known as the SCIDS case. Their facts of the case, as well as their arguments, differ considerably from those presented in the dissertation. Certainly the position of the local group to which they refer might be called risk-averse as they suggest. The risk-averse insist on zero risk and will not negotiate over acceptable risk and possible trade-offs. However, they continue, the onus should be on local groups to also take responsibility and educate the public about unreasonable fears that can be engendered by an extreme risk-averse stance. Taking a risk-averse stand, the group and the local physician inflamed unreasonable and unfounded fears in the community about groundwater contamination and its health effects, they maintain. And yet to characterize the conflict as a hysterical position rooted in unfounded fear on the part of some residents is far too simple. The SCIDS conflict is about perceptions of risk as well as about controversies of science, divisions between experts, uses of the media and a contest for ownership of a social problem. It is about collective behaviour on the part of the lay public as well as experts. It is a story of claims and counter-claims. It is an example of a not-oft-told tale: the demoralizing of a local movement, the defusing of collective behaviour, the discrediting and delegitimating effects of authorities confronted with a grass-roots challenge. It is a complex and multi-faceted story, in which many voices vied with each other to have their version of the story heard, and accepted. The voices are those of the press; the experts who examined the patients, tested the groundwater, and/or were involved on behalf of a government organization; the founder of the SCIDS group; and the written reports on groundwater testing, an epidemiology study, and the management of the ensuing conflict. It is a polyvocal fugue. Subject/counter-subject, frame/counter-frame A fugue is a polyphonic musical composition with its theme taken up successively by different voices.58 It begins with a single voice or instrument stating the theme or subject of the 58 Webster's English Dictionary, Concise Edition (Toronto:Stratheam Books, 1997). Note also that a psychogenic fugue is a dissociative disorder in which the individual forgets the past, travels to a new location and assumes a new identity (Mikkel Borch-Jacobson,l 1). I have taken the musical form piece. A second vo ice then takes up the theme whi l s t the first vo ice continues w i t h a separate melody , ca l led the "countersubject." W h e n a th i rd vo ice takes up the theme, the first and second voices go their o w n independent way . The effect, w h e n a l l the fugue's voices are go ing at once, is o f a conversat ion between different melodies , each echoing or comment ing o n what the other is saying w h i l e retaining their o w n i n d i v i d u a l characters. 5 9 T h i s dissertation is about the different vo ices w h i c h successively take up the theme o f the socia l p rob lem o f S C I D S . These voices frame the p rob lem, albeit i n different ways . D i s t i nc t frames compete as interpretive schemes i n def ining environmental i l lness and the state o f the environment. Frames are the "schemata o f interpretation" whereby ind iv idua ls render the meaningless meaningful . The ind iv idua l locates, perceives, identifies and labels occurrences and experiences w i t h i n an organized f ramework . 6 0 The process o f framing inevi tably includes an explanatory component . Frames are analogous to a picture frame w h i c h organizes the experience o f understanding what is w i t h i n it, conf in ing the " v i s i o n " to inside the frame and obl i terat ing that w h i c h is outside f rom considerat ion. 6 1 In this sense, the w o r l d is inevi tably seen, framed, f rom that vantage point . Counter-frames are the antithesis o f the established dominant frames. A counter-frame is one that resists or confronts the frame that has dominance at that point i n t ime. It co-exists at the same t ime as it opposes the dominant frame, l i m i t i n g the latter by e l imina t ing the questions, attempting to abol i sh the scaffolding o f the dominant frame and erecting its o w n i n its place. The counter-frame establishes its o w n boundaries w h i l e l i m i t i n g others. The leg i t imacy and status o f a dominant frame m a y w e l l be toppled, lo s ing its leg i t imat ing arguments, and the counter-frame m a y become dominant . The frames and counter-frames o f this dissertation are often to ld as narratives. Narra t ives rather than the psychological state as the model here. 5 9 The Grove Concise Dictionary of Music 1994. Macmillan; <http://w3.rz-berlin.mpg.de/cmp/g_fugue.html> accessed 13 April, 2001; <http://members.aol.com/fuguesite/fuguedefinition.htm> accessed 13 April, 2001. <http://jan.ucc.nau.edu/~tas3/fugueanatomy.html> accessed 13 April, 2001. 6 0 Goffman,21. 6 1 Ditton and Sharrock 1976, 329-334. are organized units o f discourse that have as their central funct ion the te l l ing o f a story. T h e y have some degree o f organizat ion, temporal i ty , and thematic coherence. 6 2 W e construct ourselves i n and through narratives. T h e y are "texts o f exper ience ." 6 3 In a sense, the drama o f the body provides the model for al l narrative. A s far as I can surmise, the mysterious need for narration is seated in the body. What else is a small cry o f pain or pleasure but a small story? 6 4 Stories or accounts o f s ignif icant l i fe events, changes and loss for example , are rout ine ly narrated i n an effort to infuse these w i t h coherence and meaning. " W e l ive i n and through stories," the construct ion o f the se l f an effect o f the narrative, rather than its cause. 6 5 W e take our subject posi t ions i n the t e l l ing o f the story s imul taneous ly as it is assembled to meet situated interpretive demands. M e m o r y , experience, t ime and b iography are constituted through the convent iona l acts o f narrating. The relat ionship between a l i fe and its l i fe history is far f rom s imple , however . Narrat ives as situated practices are often framed as embodiments o f shared beliefs and understandings. 6 6 Story te l l ing creates socia l l i fe , f raming narratives i n such a w a y as to lend leg i t imacy to the narrative. Where beliefs, ideas, and values are contested, narratives constitute the c ruc ia l means o f generating, media t ing , sustaining and representing confl ic t at a l l organizat ional l eve l s . 6 7 W h i l e the trend i n the soc ia l sciences has been towards the use o f narrative (the narrative turn), perhaps i n an effort to b r ing the subject back i n , i n medic ine there has never been any doubt about the role o f narrative. M e d i c a l narratives have existed f rom at least the eighteenth century. The narratives o f the s i ck were to be converted into a phys ic ian ' s diagnost ic , noso log ica l account after f i l ter ing through the lens o f observation. The narrative form however , was to be re ta ined. 6 8 Today , exchanges o f narratives i n academic rounds, grand rounds, patient rev iews and other occasions, where in the t e l l ing o f med ica l w o r k is enacted, funct ion as "c i rcui ts o f Hoshmand, 180. Gubrium and Holstein, 166. Griffin, 14. Frank, "Illness and Autobiography,"137. Gubrium and Holstein, 164. Briggs, 3-20. Julia Epstein, 27-55. discourse . " 6 9 Narrat ives however , are not transparent. Personal , private aspects o f experience cannot be rendered v i s i b l e through d ia logue . 7 0 Narra t ives cannot convey experience i n prist ine and authentic f o r m . 7 1 The concern w i t h the authenticity o f the narrative reflects at least two anxieties: first, the anxiety o f the researcher that the narrative data they have col lec ted is more than mere anecdote; and second, a larger anxiety by both ind iv idua l s as w e l l as society general ly about the c red ib i l i ty o f experience and identi ty. Authen t ic i ty originates i n the private or personal sphere and can be conferred by the authority o f the pub l i c domain , either f rom w i t h i n the group i n w h i c h the experience or identity is deemed authentic, or f rom outside the g roup . 7 2 B o t h F rank and G r i f f i n state that a key purpose o f their i l lness narratives is to p rov ide the condi t ions or create the space where such narratives can be credi ted . 7 3 H o w e v e r , F rank insists that the authenticity o f the narrative cannot be judged , and therefore not credited f rom outside the narrative. Au then t i c i ty is relat ional . It is i n the d ia log ica l process o f relat ing to each other that authentic experiences and identities are created. Au then t i c i ty contains notions o f certainty, timelessness and stasis. T h i s means that to be genuine w e should be able to return to the experience/identi ty and recreate it since it w o u l d be stable, static and there for the f ind ing . Au then t i c i ty however , is as m u c h about what w i l l be or what should be, as about what i s . 7 4 I l lness narratives "in part icular are about d isrupt ion, d iscont inui ty , and becoming . Authen t ic i ty then may be about resist ing what one has been made to be (the diagnosis conferred w i t h authority perhaps), or accommodat ing it. Au then t i c i ty and narrative i n v o l v e the imaginary i n the fo rm o f both the past and the future. Exper iences and selves are crafted i n the te l l ing and the te l l ing o f the story invo lves uncertainty, des tabi l iza t ion and imagina t ion as m u c h as it draws upon certainty and stabil i ty. There is a further danger w i t h narrative however , related to authenticity, and. that is the 6 9 Atkinson, 325-344. 7 0 Ibid. 7 1 Gubrium and Holstein, 164. 7 2 Paine, 79-81. 7 3 Frank, "Illness and Autobiography," 152-154; Griffin, 222. 7 4 Paine, 79-81. 26 loss o f the socia l . Narrat ives m a y accord p r iv i l eged , private space to an isolated i n d i v i d u a l . Str ipped o f socia l context and soc ia l consequences, the narrative is understood as an ind iv idua l i zed v i e w o f the self. Il lness accounts for example m a y reify the i n d i v i d u a l to compensate for what is seen i n compar i son as the authoritative stance o f the m e d i c a l account. Instead o f p r i v i l e g i n g autobiographical accounts, narratives should be p laced i n soc io-h is tor ica l context, considered one mode o f presentation among many , one form o f socia l ac t ion amidst others. 7 5 T h i s dissertation is about the i nd iv idua l experience o f i l lness as w e l l as about m e d i c a l narratives, and the narratives o f other experts. The narratives take place w i t h i n the d iscurs ive practices o f institutions such as science and the m e d i a w h i c h become part o f both l ay and expert stories. These narrative stories are the stuff o f the dissertation, beginning first as taped and then transcribed interviews, the quotes o f w h i c h are used throughout the dissertation. A t t imes, the stories are re-constructed to protect the identity o f i n d i v i d u a l participants i n the research. A l t h o u g h the story o f S C I D S was to ld i n the med ia , the process o f in te rv iewing , or even o f requesting interviews, sol ic i ts / invi tes a side o f the story that up unt i l that moment had remained untold , at least p u b l i c l y . Everyone feels the need to describe experience. O f this there is no doubt. But why the need exists is still unexplained. There is, o f course, the fact that when knowledge is kept silent, it loses potency, fades, or even moves backward, erasing itself. 7 6 There is , i n this dissertation, some test imony w h i c h must remain silent, g iven by phone at the t ime o f wi thdrawa l o f consent to in terv iew or cancel la t ion o f the in terv iew appointment. W h i l e it has enriched m y understanding o f the dissertation topic , o f the pol i t i cs o f diagnosis , disease, d iscovery and deceit, it cannot be w o v e n into the understanding here except i n the hyphens, the gaps, the silences. That w h i c h becomes the pub l i c discourse is often not whole , not complete , for there may be parts o f the story that must stay private, and perhaps be erased. T h i s is h o w a history is constructed and h o w the present m a y be framed. Atkinson, 325-344. Griffin, 276. 27 A n d there is this too. In the process of telling a story, you w i l l come to understand events on a far deeper level. This is as true o f public discourse as it is in a private life. Every society repeats stories about itself, fashioning a history that w i l l frame the present. 7 7 In addi t ion, conf l ic t entails many emotions, some negative, many misunderstandings, and feelings o f i l l - w i l l between some o f the ind iv idua l s i n v o l v e d . Things said, sentiments expressed, cannot a lways be quoted as the affront caused may lead to disrepair o f w o r k i n g re la t ionships , legal act ion, or loss o f l i v e l i h o o d . Re-constructed narratives i n w h i c h one vo ice m a y speak for a number o f participants have been used i n this dissertation as a technique to protect part icipant confident ial i ty , and at t imes, anonymi ty . These re-constructed narratives were used to int roduce chapters and/or provide the background, the frame, against w h i c h the analysis is set. T h e y were based o n the interviews and have attempted to keep close to what was said there. Becoming the composer In retrospect, research can be seen as the juncture o f many paths w h i c h have l ed to this point . F o r myself , the paths are those o f health and the environment, communi ty ac t iv i sm and po l i t i c s , the intersections o f w h i c h I o n l y n o w recognise as I write this section. M y entry into the health field began w i t h nurs ing t raining when I left school . T h i s was f o l l o w e d by a stint o f ra is ing ch i ld ren and being at home for a number o f years. Sett led i n a pu lp and paper m i l l t o w n at this t ime, I became po l i t i ca l ly active at the communi ty l eve l , pe t i t ion ing the borough counc i l over a dec i s ion they had made and w i t h w h i c h the majori ty o f the commun i ty d i d not agree. A s those before me who have questioned the decisions o f others w h o are ul t imately accountable to the pub l i c have found, I, and m y fami ly were confronted and threatened, and referred to w i t h ma l ice by borough counci l lo rs . In a t o w n constructed and cont ro l led by the pu lp and paper m i l l company, it was imposs ib le to avo id consider ing matters o f the environment. Forests planted spec i f ica l ly for harvest by the m i l l company, o f Doug la s F i r and Radia ta P ine w h i c h were fast g r o w i n g and harvestable w i t h i n 25 years, were generally taken for granted. The forests, two o f them, one i n 7 7 Ibid. 28 the T o k o r o a area i n the central N o r t h Island and the other i n K a w e r a u o n the east coast o f N e w Zea land , had been founded i n the depression o f the 1930s, as w o r k fare for increasing numbers o f unemployed men . The t ime spent i n the forests, w i t h its undergrowth o f ferns, and the orchids and supplejack that nested and laced through the trees, together w i t h the songs o f the N e w Zea land w o o d p igeon , tuis and bel lb i rds seems now, i n retrospect, somewhat i d y l l i c . H o w e v e r it was the dissonance and disjunctures when the same area o f trees was fe l led, and the birds were displaced, the undergrowth wrenched out o f earth and discarded that began thoughts about the relat ionship o f the economy, the environment , nature, and culture. H o w e v e r , i n those years it was not something spoken o f p u b l i c l y . The town, and everyone 's l i v e l i h o o d , was dependent upon the pu lp and paper company , and dissidents were quashed. A pa id j o b however eventual ly seemed a necessity, and I found m y s e l f soon w o r k i n g as a p o l i c y advisor i n the M i n i s t r y (then Department) o f Hea l th i n N e w Zea land . W h i l e seen as a "trai torous" m o v e by some i n the communi ty , it was here that I was to learn h o w expertise was brought to bear and presented to the pub l i c through government statements, p o l i c y , codes o f practice, and through the vo ice o f government ministers. A Masters degree later, w h i c h examined the construct ion o f w o m e n ' s identity i n the p u l p and paper m i l l t o w n I had just left; a summer school course at L a Trobe Un i v e r s i t y , M e l b o u r n e , Aus t r a l i a , o n W o m e n and the Envi ronment ; and eventually as ful l - t ime faculty o n a Bache lo r o f N u r s i n g degree i n , i ron ica l ly , the Department o f Env i ronment and Hea l th Sciences at W e l l i n g t o n Po ly techn ic (now M a s s e y Un ive r s i t y ) , I began to weave the strands o f health and the environment together. D u r i n g this t ime, the N e w R i g h t took over N e w Zea land through the Lef t door. Creep ing into the minds o f the people and the structure o f the society l ike a scourge, unseen and unquestioned, it demol i shed a l l that workers before had fought for and w o n . En t ry to the doctoral p rogram at the U n i v e r s i t y o f B r i t i s h C o l u m b i a i n Vancouve r , Canada, made escape possible . Here , i n t ime, I took research w o r k on the Fraser B a s i n Eco s y s t em Study, a T r i -C o u n c i l funded, in terdisc ipl inary Eco-Resea rch Project. I n v o l v i n g a retrospective invest igat ion o f a group o f people w i t h health symptoms w h i c h they had very v o c a l l y l i n k e d to the environment, it was to become m y dissertation. 29 Anothe r j o b , this t ime i n H a l i f a x , w o r k i n g on c l i n i c a l drug trials i n A l z h e i m e r ' s disease w h i l e s imul taneously wr i t ing the thesis. Here , a m i c r o c o s m par excel lence (for m y purposes), o f experts. W h i l e not part o f m y thesis matter, nonetheless it p rov ided me w i t h the opportuni ty to wa tch and wonder and m u l l over what was emerging f rom m y research data. The results presented here as the dissertation are the point to w h i c h , retrospectively, these var ious paths seem to have led. C o n d u c t i n g the F u g u e A s s e m b l i n g the voices takes place not haphazardly but methodica l ly w i t h an eye to the requirements o f research methods. Research results i n the compi l a t ion o f data for v i e w i n g s imul taneously i n ways that w o u l d never have occurred otherwise. Scattered through time and space, these leaves would never have met without her redistributing their traits into new combinations. 7 8 C o m p i l a t i o n o f data, methods and results are the response to the questions o f the research. A t a very basic l eve l , and to decipher among the mul t ip le vo ices , the fugue, I found m y s e l f ask ing , "what is go ing o n here?" T h i s led to other questions. It appeared a conf l ic t about the environment and its effect o n health was i n part what was go ing on. There was a contest over the def in i t ion o f an i l lness , w h i c h was eventually named S C I D S . H o w was S C I D S constructed and legi t imated by the experts i n v o l v e d , by people w i t h S C I D S , and by the media . The l i n k w i t h the environment i m p l i e d that r isk was i nvo lved . H o w then was r isk defined and legi t imated? A n d management by government seemed to be occur r ing , but o f what? W a s it the i l lness , the S C I D S group, r isk or the conf l ic t that was be ing managed? O r a l l o f those? Were they a l l one and the same thing? These questions and m y answers to them p rov ided the f ramework for the thesis. In Chapter T w o , I outl ine the method for co l l ec t ion and analysis o f data i n the dissertation. M i n d f u l o f the fact that I a m c r i t iqu ing research methods used i n the const ruct ion o f what became the pub l i c issue o f S C I D S , I quest ion m y o w n research methods and their potential to do the same. Latour, Pandora's Hope, 38. Chapter Three establishes the parameters w i t h i n w h i c h the dissertation is set. The literature rev iew, it provides an o v e r v i e w o f the th ink ing , i nc lud ing pre l iminary thoughts and theories, about the thesis, and the theories w i t h i n and across w h i c h the dissertation l ies . The next chapter, Chapter Four , provides the lone vo ice o f the founder o f the S C I D S group, and her experience as a person w i t h S C I D S . She illustrates her coopt ion o f expert discourse to understand the embodiment o f r isk . Chapter F i v e examines the m e d i a perspective p rov ided to the pub l i c i n the newspapers and news magazines , loca l and regional . Here , the voices o f the various experts are in t roduced conjunct ion w i t h the voices o f those w i t h S C I D S . The frames and counter-frames beg in to take shape as the lay pub l i c and experts situate themselves. The voices o f experts are the focus o f Chapter S i x . The role o f science and technica l frames i n contesting ownership o f the p rob lem is established and examined. B y no means an homogeneous group, the perce ived authenticity o f the experts d rawn into the conf l ic t p lays a large part i n the eventual ownership o f the soc ia l p rob lem. Chapter Seven outlines the management strategies put i n place by the p r o v i n c i a l Min i s t r i e s o f Hea l th , Agr i cu l tu re and Env i ronmen t to conclude the conf l ic t and restore commun i ty trust. C i v i l i t y lost must be w o n back, and the opportunity for an environmenta l confl ic t such as S C I D S to rear its head again, put to bed. The f inal chapter, Chapter E i g h t concludes the dissertation by setting the conf l ic t i n a w ide r theoretical f ramework. 31 CHAPTER TWO: ARRANGING THE COMPOSITION: RESEARCH METHODS D u r i n g the years 1994-1996 I w o r k e d as a research assistant o n the Eco -Res ea r ch Project , Prospects for Sustainability, a mul t i -d i sc ip l ina ry project at the U n i v e r s i t y o f B r i t i s h C o l u m b i a ( U B C ) , Vancouve r , B . C . I n v o l v i n g twenty-three faculty and more than forty graduate students across twenty different departments and institutes at U B C , the f inal report i n 1997 indica ted that present human ac t iv i ty i n the lower Fraser B a s i n was not sustainable. A considerable var ie ty o f projects were undertaken as part o f this research, and a broad range o f human impacts invest igated. 7 9 M y invo lvement i n the Eco-Resea rch Project was a p re l iminary inves t igat ion into the environmental conf l ic t I shal l refer to as S C I D S , us ing data f rom newspaper articles predominant ly . I was able to benefit f rom the w o r k o f other So c i o l o g y graduate students 8 0 w h o had been i n the f i e ld , and w h o together w i t h faculty had in terviewed ind iv idua l s i n v o l v e d i n various environmenta l groups or organizations deal ing w i t h environmental concerns. A background i n health care and health p o l i c y , together w i t h an academic interest i n body/ ident i ty and socia l movements paved the way for a more intense interest i n the interactions o f a l l the players i n the S C I D S conf l ic t . Contact w i t h some o f the key people i n this doctoral research was made at that t ime through m y w o r k on the Eco-Resea rch Project. T h i s chapter begins w i t h a history o f the early research process, then outl ines the data co l lec t ion , preparation o f data and analysis methods. I have drawn upon the structure o f the fugue as an o rgan iz ing framework. The structure o f qualitative data, its management and analysis share something o f the rhy thmic regularity and irregulari ty o f the fugue. The entry o f voices (the data) one b y one as is characteristic o f the fugue, the statement and restatement, fragmentation, imi ta t ion and repetit ion o f themes, as w e l l as themes w h i c h beg in and do not 7 9 Healey to Eco-Research Study participants; Michael C. Healey, Final Report; idem, The Lower Fraser Basin Eco-Research Project. 8 0 Especially Barbara Alldritt and Andrea Kastner. 32 f in i sh provide a po ly v o c a l and contrapuntal 8 1 character to the research. Finding the Theme(s) M y major theoretical and research interest upon beg inn ing this doctoral research was that o f self, body and identity. M y involvement i n the eco-research project, and especia l ly m y assignment to look at the S C I D S group p iqued this interest. M y in i t i a l and emergent cur ios i ty f rom the research o f newspaper articles about S C I D S was the major discernible discourses and their effect on both i nd iv idua l and co l lec t ive identities. I had ident i f ied three m a i n discourses, those o f health/il lness, the environment , and gender. There were three m a i n groups o f knowledge / in format ion i n w h i c h these discourses circulated. T h e y were the S C I D S group, the newspapers and a group o f experts. These I had anticipated w o u l d become the three data groups i n the dissertation. M y research quest ion was " h o w do the discourses o f the environment , health and gender become part o f i nd iv idua l and col lec t ive ident i ty?" T h i s quest ion was further d i v i d e d into "what are the discourses o f health, gender and environment espoused i n relat ion to the S C I D S conf l ic t? A r e these discourses the same among the three groups: the experts, the newspapers, and the S C I D S group, or are there important differences? Wha t is the se l f that these discourses establish, and h o w does that discourse construct an i n d i v i d u a l identi ty? W h a t are the processes by w h i c h the discourses become part o f col lec t ive identi ty, par t icular ly the co l lec t ive identi ty o f a social movement? W h a t are the interactive processes, between i nd iv idua l and co l lec t ive ident i ty?" M y pr imary focus was the S C I D S group itself, w i t h the experts and newspapers secondary. The conversations w i t h S C I D S group members w o u l d , I hoped, p rov ide insight into the processes o f identity format ion, both i nd iv idua l and col lec t ive . Further, I was interested i n the effect o f these discourses on the format ion o f identity. Exper t s were to be in terviewed to e l ic i t 8 1 Contrapunctal is defined as "of, or relating to, counterpoint." Counterpoint comes from the Medieval Latin (circa 15th Century) contrapunctus {contra: counter; punctus: musical note, melody). Counterpoint is defined as "1. one or more independent melodies above or below a given melody; 2a. a complementary or contradictory claim; 2b. use of contrast or interplay of elements in a work of art." (Merriam-Webster Online http://www.m-w.com/cgi-bin/netdict?contrapuntal') 33 their understanding of the three discourses in relation to SCIDS, and the transmittal of these discourses to the public gleaned from the newspaper articles. My main interest, however, was with the influence of the media interpretation and expert discourses on identity, self, and conceptions of the body of SCIDS group members. Eager to interview members of the SCIDS group, I was surprised and frustrated to discover how inaccessible they were (the group was defunct for some 3 or so years by the time I entered the field). The founder and spokesperson of the group was contacted and granted me an interview. However, no introduction or provision of names of previous members of the group was forthcoming. Meanwhile interviews with the experts involved in the SCIDS conflict were completed. My deployment to another city on the farthest coast from Vancouver meant that it was impossible to do the kind of 'detective' work necessary to trace the former members of the SCIDS group. The dissertation research took on a new persona as my interviews were now with the experts predominantly, with one interview only with a SCIDS group member. No longer able to focus on identity, self and body as I had originally planned, the discourses of the expert group now took predominance. While speaking of health, the environment and very little of gender, there was another frame that overshadowed the three discourses in which I had initially been interested. The frame was that of science, and was an 'echoing' frame in each of the discourses. As in the fugue, the frame of science was the central theme that was stated by each of the voices, repetitious and fragmented, recurring in episodes leading to new statements of the theme. The frame of science dominated the experts' thinking about and approach to SCIDS, and was an accepted frame by the SCIDS group founder herself. Like an echo, it resounded unexpectedly throughout the data. SCIDS was an environmental conflict. At a surface level, some of the experts, the health experts, appeared to be attempting to unravel the mysteries of environmental disease. Yet it seemed as I dug deeper, and as potential research participants began to hesitate or refuse invitations for interviews, that something a little more than unravelling the mystery of disease had occurred. My research question became, "What is going on here?" I now needed to immerse myself in the data and listen, letting "what was going on" emerge from the data itself. Government had responded to the conflict with various research studies and regulations 34 w h i c h , w h i l e they were a concerted effort across minis t r ies to respond, had something o f an ad hoc r ing to them. The concerns o f a por t ion o f the communi ty w i t h regards to the degradation o f the environment and the perceived l i nks between the environment and the symptoms they suffered were not ser iously considered. The experts it seemed were i n v o l v e d i n manag ing the conf l ic t m u c h more than they were i n attempting to identify the constituent symptoms o f the syndrome S C I D S and to locate its causes. Based on this observation, m y research quest ion became "what was the role o f the experts i n the S C I D S environmental conf l i c t ? " R i s k was impl ica ted i n this conf l ic t . The experts i n v o l v e d were the allocators o f r isk , bas ing their decis ions on whether the t o x i c o l o g y or ep idemio logy study results fe l l w i t h i n safe l imi t s , a l loca t ing o n the basis o f scientif ic evidence. "Were the experts then managing r isk or managing conf l ic t , and were those two necessari ly exc lus ive o f one another? A n d what was the role o f science i n th i s?" T h i s was where I began i n analys ing the data. Howeve r , first I need to return to the data co l lec t ion i t se l f and to p rov ide a more detailed outl ine o f the data and the processes o f co l l ec t ion and preparation o f data for analysis . Assembling the Voices: Data Collection The voices o f the fugue announce and answer the m a i n theme or subject. D a t a (voices) are not so m u c h col lected as generated i n an interactive process w i t h the sources o f that data. T h i s study inc luded several types o f data: newspaper/magazine articles, in-depth in terviews, documents and v ideo . The news articles I began the research w i t h newspaper and news magazine articles, w h i c h p rov ided a background to the in i t i a l concerns about the poss ib i l i ty o f some outbreak o f i l lness that might be l inked to envi ronmenta l factors. T h i s p rov ided the impetus to further research i n the field. The newspapers and news magazines i n w h i c h articles were located were: • The Abbotsford News • Abbotsford Times • The Chilliwack Progress • The Vancouver Sun • British Columbia Report • The Western Producer Six ty - two articles f rom the years 1986 to 1994, cover ing both groundwater con tamina t ion and what was soon to be k n o w n as the S C I D S phenomenon were analyzed. Searches were made o f newspapers and news magazines f rom loca l communi t i es i n the Fraser V a l l e y , as w e l l as V a n c o u v e r and the wider B r i t i s h C o l u m b i a region, w i t h a preponderance f rom A b b o t s f o r d where S C I D S was centred. A r t i c l e s about S C I D S were the in i t i a l focus for searches un t i l it became evident that a l i n k was be ing made between groundwater p o l l u t i o n by nitrates and pest icides and the health concerns expressed i n the V a l l e y . A r t i c l e s o n groundwater contaminat ion concerns ranged throughout the years 1986 to 1994 whi l s t S C I D S was more speci f ica l ly covered i n the news between M a y 1990 to Ju ly 1993. In-depth interviews Interviews are dynamic soc ia l interactions characterized by mul t ip le dialogues be tween mul t ip le selves. N o t s i m p l y a source o f data or the repositories o f "objective facts," in terv iews are mutua l ly constructed socia l events. 8 2 Interviews were conducted w i t h the m a i n experts i n v o l v e d i n the S C I D S confl ic t , as w e l l as the founder o f the S C I D S group. The in te rv iew participants were: • The Di rec to r o f Project E n v i r o - H e a l t h • A Fraser V a l l e y M e d i c a l Off icer o f Hea l th • A B . C . M i n i s t r y o f Agr i cu l tu re agrologist • A Fraser V a l l e y orthopaedic surgeon • T w o U n i v e r s i t y o f B r i t i s h C o l u m b i a ( U B C ) epidemiologis ts • A hydrogeologis t (private company) • The founder o f the S C I D S group M u l t i p l e in terviews were conducted w i t h some o f these participants. A n addi t ional Coll ins, 1 36 hydrogeologis t and an environmental tox ico log i s t refused to be in terviewed. The hydrogeologis t was asked twice for an interview, w i t h several months interval between requests. H e remained fearful o f los ing his j o b i f he discussed the S C I D S case. The environmental tox ico log i s t i n v o l v e d w i t h water testing dur ing the S C I D S case agreed to an in te rv iew and dec l ined at the t ime o f in terv iew appointment. T w o further key participants d i d not respond to requests for in te rv iew or to fo l low-up messages left for them. One o f the two epidemiologis ts w h o conducted the ep idemio logy research was located i n Ot tawa and was not in terviewed. Out o f a total o f 12 key people i n v o l v e d i n the S C I D S conf l ic t , I was able to in te rv iew seven. T h i s set o f in terviews was complemented by access to a further 106 taped interviews w i t h commun i ty leaders i n Abbo t s fo rd i n w h i c h perceptions o f environmental issues were explored . A letter was sent to each i n d i v i d u a l to be interviewed, exp la in ing the study and the rationale for their inc lus ion , requesting their part icipat ion. T h i s was f o l l o w e d by a telephone c a l l to arrange a date, t ime and place for in terview. Before beginning the in terview, a consent f o r m w h i c h inc luded a clause ensuring conf ident ia l i ty was signed by both the participant and mysel f . Interviews were f rom one to three hours i n length. Interviews were unstructured but guided by themes and topics I was interested i n cover ing . These were the state o f the environment i n the L o w e r Fraser V a l l e y , health issues i n the V a l l e y , the S C I D S group, the role o f environmental groups i n the communi ty , invo lvement o f environmental groups i n the S C I D S confl ic t , experts ' roles i n the S C I D S confl ic t , farming practices, and confl ic t management practices. The interviews were taped, later t ranscribed verbat im, and formatted for use i n quali tat ive data analysis software programs. The dec i s ion to in terv iew rather than m a i l out a more structured and impersonal questionnaire was made for several reasons. The judgement that this was a fraught, po l i t i ca l issue was v ind ica ted by the nervous responses and occas ional refusal. In addi t ion, interviews enabled the gathering o f i n -depth informat ion through face-to-face interaction i n w h i c h p rob ing , di rect ing, interpreting, c la r i fy ing , quest ioning, and summar i z ing o f responses by a l l in te rv iew participants, interviewer(s) and subject(s), c o u l d be undertaken. Documents Various reports were published by government departments on the quality of the groundwater and the status of SCIDS, many instigated by the publicity around SCIDS. In addition, some documents which were of importance to the undertaking of government contracted research in relation to SCIDS were provided by research participants. These became a third set of data. Documents included in the analysis were: • the epidemiological report and associated documents: A Cluster of Muscle Weakness in Abbotsford: Epidemiological Critique of a Purported Clinical Syndrome. Final Paper Submitted in Partial Fulfillment of the MHSc Degree, Department of Health Care and Epidemiology, University of British Columbia, December 1990. • "The Abbotsford Pattern of Muscle Weakness: A Summary." undated. • "An Investigation into a Cluster of Muscle Weakness in the Fraser Valley, British Columbia." February 26, 1992. "An Investigation of Muscle Weakness in the Fraser Valley, British Columbia." BC Health and Disease Surveillance, 1992:1:8:64-70. • "Guidelines for Investigating Clusters of Health Events." Morbidity and Mortality Weekly Report, July 27, 1990. • Project Enviro-Health Quarterly and Annual Reports, 1993-1996 • Ground water research reports: • Final Report: Fraser Valley Ground Water/Drinking Water Study. March 1992. » Nitrates and Pesticides in the Abbotsford Aquifer, Southwestern British Columbia. July 1992. • Fraser Valley Groundwater Monitoring Program: Final Report. February 1995. Video data The video Project Enviro-Health: Ensuring a Healthy Environment in the Fraser Valley through Community Action was produced as both a public relations exercise and an education tool by the project. It provided further insight into the perspective from which the project 38 addressed what it referred to as the S C I D S p rob lem. Triangulation of data M u l t i p l e data co l lec t ion techniques measur ing a s ingle concept or construct i s referred to i n quali tat ive research as t r iangulat ion. Tr iangula t ion is a method used i n surveying , mapp ing , nav iga t ion and mi l i t a ry practices. Three k n o w n points or objects are used to d raw s ight ing l ines towards an u n k n o w n point or object, the l ines generally intersecting to fo rm a tr iangle ca l l ed the tr iangle o f error. A s s u m i n g the l ines are equal i n error, the centre o f the tr iangle is the best estimate o f the true locat ion o f the n e w poin t or object . 8 3 T h i s concept has been transferred to other types o f research where several data sources are used to ver i fy through repl ica t ion a conc lus ion , or rule out other conclus ions . Where different sources are inconsistent or conf l i c t ing , t r iangulat ion can push towards a more complex , context-respecting set o f explanations. F ind ings can be elaborated or a new l ine o f t h ink ing init iated. The data co l lec ted for this current study are triangulated i n that there are mul t ip le data samples: documents , in terviews, v ideo , and newspaper articles. Preparation of data Interviews were transcribed verbat im from audio tape i n preparation for c o d i n g i n the qual i ta t ive software. Transcr ip t ion was completed by both m y s e l f and a pa id transcriber. Transcr ip t ion conventions were incorporated to denote pauses ( ), emphasis ( C A P S ) , non-verbal language {laughter}, and recol lect ions and observations for m y s e l f ([S is s h o w i n g me newspaper articles about the case]). Di f f icu l t i es w i t h hearing and understanding a spoken w o r d o n tape were denoted w i t h the possible w o r d between forward-slash symbols (/aquifer/) or as a quest ion mark between forward-slash symbols (/?/). Transcripts were edited after t ranscribing was completed. T h i s i n v o l v e d l i s tening to the tape w i t h the transcript on screen, and corrections made and observations added. E a c h transcript was p rov ided a ' . ed ' suffix to indicate that it had been edited. Berg, 4-6; Miles and Huberman, 266 & 267. 39 A t the t ime o f transcription, the document was also formatted for use i n the software. Dec i s ions were made as to the amount o f text that w o u l d in i t i a l ly be selected for cod ing as w e l l to h o w far the cod ing c o u l d expand beyond'that for context. The software Q S R N U D * I S T , r ev i s ion 4, requires a choice between one l ine o f text and one paragraph o f text for in i t i a l c o d i n g . Since people don ' t often speak i n paragraphs, I opted for one l ine o f text, w h i c h also a l l o w s for finer cod ing . F r o m one l ine o f text, cod ing c o u l d be expanded to a section (denoted by the character ' * ' at the beg inn ing o f a section) or to the w h o l e document. The speech o f the interviewer and the respondent i n one turn was designated as a section i n this research. C o d i n g by dragging the cursor to h ighl ight the amount o f speech to be coded also a l l o w e d chunks o f text larger than a section to be coded. F o l l o w i n g t ranscript ion, edi t ing and formatting, in terv iews were ready for use i n the var ious software. A number o f key documents i n hard copy were summarized, formatted and read into the software. The documents were The Abbotsford Pattern of Muscle Weakness: A Summary, undated; A n Investigation into a Clus te r o f M u s c l e Weakness i n the Fraser V a l l e y , B r i t i s h C o l u m b i a . February 26, 1992; A n Invest igat ion o f M u s c l e Weakness i n the Fraser V a l l e y , B r i t i s h C o l u m b i a . " BC Health and Disease Surveillance 1992:1:8:64-70. Other documents and the newspaper articles were used as hard copy. The v ideo was d ig i t i zed to C D - R o m for c o d i n g i n the software. Giving Voice to the Themes: Data analysis G i v i n g vo ice to the themes required recogn iz ing the themes i n the data. T w o quali tat ive software packages, Q S R N U D * I S T and A T L A S / t i , were used to manage the data as w e l l as assist i n thematic and grounded analysis. In a fugue, once a l l the voices have stated the theme the challenge to the composer is to develop the mater ial , the theme, i n the most invent ive and c lever w a y poss ib le . 8 4 A s imi la r process was undertaken us ing the software w i t h the data. The themes or frames were explored and developed, fragmented and restated, ensuring their g rounding i n the 84Thomas Matyas 2000 <http://members.aol.coin/fuguesite/fuguedefinition.htm> accessed 13 April, 2001. 40 data (the voices). Although I had intended to use all the data in each of the software (to the extent that the software would take each type of data), in the end I used each program for its strengths in relation to the other program. ATLAS/ t i was used for analysing the video, the only software at the time that could do so easily, while coding of the interview data, the newspaper articles and documents took place in QSR NUD*IST 4. A brief description of the two selected software programs can be found in Appendix 2. The process and details of analysis can be found in Appendix 3. The benefits of qualitative data analysis (QDA) software Analysis of data requires a set of mechanical operations. Tedious, time-consuming and mundane when traditionally performed by hand, the computer will do anything that can and has been done on paper in qualitative research, more efficiently and easily.85 Data in written form can be speedily recorded, and rapidly retrieved. Similarities, differences and relations between text passages can be identified and mechanically coded and retrieved. Coding schemes can be easily and quickly changed at whim. Ideas can be inserted as they occur, and new coding and new codes done at will . The raw data remains close by, at hand, immediately available for investigation. And less paper makes the analytical process significantly less cumbersome, and less tedious.86 Further, an enhanced ability is provided to sort, sift and think through the patterns to be found in the data.87 Not only are the clerical-type tasks rapidly dealt with, but the quality of data analysis is enriched. The computer's ability to handle data easily and efficiently means that data are less likely to be disregarded, or worse, lost. The small but significant pieces of information buried within the larger mass of material are more easily located; the deviant case more easily found. And there is encouragement to "play" with the data, to have "fun" in the analytic stages, 8 5 Lee and Fielding, "Computing for Qualitative Research," 3; Richards and Richards, "Transforming Qualitative Method," 38; Drass, 334-346. 8 6 Lee and Fielding, "Computing for Qualitative Research," 3; Richards and Richards, "Transforming Qualitative Method," 38; Tesch, "Introduction," 150; Drass, 340 8 7 Tesch, "Computer Software,"! 51; Richards and Richards, "Can Computers Do It?" 28. 41 rather than approaching this process as one that is mundane and b o r i n g . 8 8 The research routine too is altered. The savings i n t ime also amount to savings i n energy. Intellectual energy can n o w be directed towards the analysis rather than t i r ing ly spent o n the mechanica l tasks o f the research process . 8 9 C o d i n g can begin as soon as the first data are col lected, p r o v i d i n g the opportunity for a more thorough ref lect ion o f the data co l l ec t ion process w i t h consequent redirect ion or amendment i f necessary. C o d i n g becomes a process that goes the length o f the project, rather than merely being one stage o f the research. It becomes m u c h easier to mult i - task, entering data, cod ing , testing assumptions for example almost s imul taneously , rather than pursu ing these i n l inear fashion as tradit ional quali tat ive methods encourage. 9 0 W i t h acceptance and use o f computer ized Q D A comes dest igmatizat ion and leg i t imat ion o f quali tat ive research. Qual i ta t ive research has tended to be defined i n relat ion to quantitative research. That is , the "'non-quantitative' handl ing of 'unstructured ' data ." 9 1 N e g a t i v e l y defined, o f l o w status, and w i t h a reputation for untrustworthy results supported by anecdotes, qual i tat ive research has been l eg i t imized by computer ized Q D A by p r o v i d i n g the r igour and transparency that quali tat ive method puportedly l a c k e d . 9 2 The Disadvantages of QDA software The speed and eff ic iency w i t h w h i c h c le r ica l tasks can be undertaken by computer , and the f l ex ib i l i t y for cod ing schemes provide not on ly benefits but some further impl ica t ions as w e l l . A revered, i f not reif ied, aspect o f qualitative research is "closeness to data." M a n y quali tat ive researchers value close involvement w i t h and interaction w i t h their data, and fear its loss w i t h computer ized Q D A . The tactile, handl ing o f data has been ex to l led by many, often l i n k e d to research insights and creativity. In contrast, quantitative researchers have been 8 8 Lee and Fielding/'Computing for Qualitative Research," 4; Richards and Richards, "Transforming Qualitative Method," 46-51; Tesch, "Computer Software," 150. 8 9 Tesch, "Computer Software," 143. 9 0 Richards and Richards, "Transforming Qualitative Method," 46-51; Tesch, "Computer Software," 144 9 1 Richards and Richards, "The NUD*IST System," 39. 9 2 Richards and Richards, "Transforming Qualitative Method," 39; Tesch, "Computer Software," 148 . 42 perceived by qualitative researchers as being distanced from their data, engaged with computerized analysis of huge data sets.93 Qualitative research traditionally has tended to value smaller data sets, trading breadth for depth, the latter one of the prized characteristics of qualitative research. The inherent difficulty, however, in dealing in-depth with huge quantities of data has constrained traditional qualitative data analysis. At the same time there has been the criticism by the quantitative research community that no basis exists, namely quantity, for staking qualitative research claims. The results of qualitative research have been, quite simply, labeled untrustworthy.94 The ability to now efficiently and speedily search, retrieve and analyze by computer every bit of data, no matter how large the data set is enticing. The concern lies where a large data set is selected merely because the availability of the technology makes it more feasible to do so. In addition, volume of data may well drive the analysis, with important and interesting things being missed. Instead of analyzing identified phenomena for example, analysis may be reduced to counting occurrences of phenomena. Attention and energy may well be spread out over large numbers of instances with little analytical effort put into any one instance. The ease with which computer technology allows the researcher to use voluminous data may well lead to a trade-off of resolution for scope.95 Commodification of qualitative research may occur. The speed and efficiency of computerized QDA can all too easily result in a lack of knowledge and understanding as to how the final results were achieved. Seduced by the convenience and credibility of the program's rendering of sense, attention is diverted from the logic and research design issues that actually govern the adequacy of analyses.96 An added outcome is "quick and dirty" research characterized, in addition, by preemptive data reduction and quasi-quantitative analysis posing as qualitative.97 Seidel, 115; Ragin and Becker, 51; Tesch, "Computer Software," 151. Tesch, "Computer Software," 151. Seidel, 115. Lee and Fielding, "Computing for Qualitative Research," 6-9 Richards and Richards, "Transition Work!" 20. 43 Often ignored is the fact that computer ized Q D A is embedded i n a culture o f t echnology . Techno logy is not mere ly a " thing" o f material culture, but is a " soc ia l ly and cul tura l ly constituted system o f knowledge and socia l re la t ionships ." 9 8 A n implemented technology carries w i t h it a v i s i o n o f the society i n w h i c h it is to be used, w h i c h includes a set o f s y m b o l i c and socia l circumstances w h i c h obl ige people to direct their affairs i n certain ways . T a k i n g the v i e w o f neither the technologica l somnambul is t nor the technologica l determinist, both o f w h o m consider technology to be an object external to socia l behaviour , or a " th ing," I want to argue that technology is socia l behaviour , and as such loaded w i t h pre-understandings, not least o f w h i c h is the bu i l t - in denial that it is a fo rm o f soc ia l behaviour . 9 9 While the cybernetic model [implicit in computing] may be a useful paradigm for knowledge, it is markedly different from that o f qualitative research which emphasizes diagnosis, not control, and interpretation, not explanation. On learning to use the computer the fieldworker is consuming a culture o f control, n o t j u s t a t o o l . 1 0 0 What we want to do is changed by what we can do. Techno logy does not mere ly do what it is to ld , but influences our ideas o f what is possible and des i rable . 1 0 1 Previous research o n the introduct ion o f computers into offices has found that w o r k functions change to accommodate the computer, for example . Tasks become increasingly fragmented, repetitive and meaningless ; knowledge , p rev ious ly the possess ion o f the worker , becomes encoded into the computer data base; menu-dr iven software places control o f communica t ion w i t h the computer; and the loss o f sk i l l s and int roduct ion o f n e w sk i l l s required to operate sophisticated systems requires the i nd iv idua l to evolve to accommodate the m a c h i n e . 1 0 2 Perce ived by many researchers as merely a t o o l , 1 0 3 Q D A software may come to define 9 8 Pfaffenberger, 15. 9 9 Pfaffenberger, 15. 1 0 0 Lyman, 86-87. 1 0 1 Crang, Hudson, Reimer, and Hinchliffe, 771-787. 1 0 2 Damarin, 16-20. 1 0 j Smith & Hesse-Biber's research with 12 qualitative researchers (faculty and graduate students) about their experience with QDA software indicates that the computer is seen as a tool that allows them to be more efficient and organized (Smith and Hesse-Biber, 425). 44 method.104 The unstructured abyss that often follows data collection, the sense of not knowing what to do next, and the desire for an ordered process may lead to the grasping of a software program that then becomes the method.105 The problem, it is suggested, is that the use of software presupposes a way of seeing the problem and the situation. Further, the structure of individual software programs may influence research results. Where software defines method, the goals of the study may be completely missed.1 0 6 In addition, studies comparing software programs using the same data have found a qualitative difference in results for each program.107 This points to the importance of knowing the developer's assumptions about research that are built into the program, as well as the implications of using one program only for analysis of research data. A further criticism, and one linked to the developer's assumptions about qualitative research, has been an increasing tendency towards homogeneity in what has been a methodologically diverse field. Most QDA software programs require text in ASCII format, expect the data to be easily divided into single files, and drive the research process towards code-and-retrieve at the expense of any other sort of approach. Rather than a creative approach to analysis, researchers are led methodically to code every chunk of text. Rather than thinking about the ideas emerging from the data, this creativity is submerged in a process in which coding remains a task to be done, and a way of controlling messy data.108 Linked here is the central role of grounded theory as a premise of many of the QDA programs. The choice of techniques available, for example coding, may also prescribe choice of method (grounded theory). Homogeneity in the software can coerce qualitative research in 1 0 4 Agar, 181-193. 1 0 5 Crang, Hudson, Reimer, and Hinchliffe, 775. 1 0 6 Again, a situation is described where The ETHNOGRAPH's code and retrieve approach completely missed the goals of a study (Agar,181-193). However, although The ETHNOGRAPH has been described by Agar, this is not a situation specific to The ETHNOGRAPH software in any way. The point is that it can and does happen when QDA software is used blindly without an awareness of how the software structures the researcher's view of the data. 1 0 7 For example Walker, 91-111, found in a comparison of three QDA programs with the same data, that Martin yielded "thick description" whilst The ETHNOGRAPH and Gator were more geared towards the discovery of regularities and patterns in the data. 1 0 8 Crang, Hudson, Reimer, and Hinchliffe, 771-787. 45 restricted d i rec t ions . 1 0 9 N o t on ly is there a tendency towards homogenei ty among qualitative research methods, but as w e l l , a c los ing o f the qualitative-quantitative d icho tomy. There has been renewed insistence i n the past decade or so that techniques for sort ing and ana lyz ing quali tat ive data be r igorous. The in t roduct ion o f computers has co inc ided w i t h an increased c a l l i n quali tat ive research for deve lop ing and jus t i fy ing r igorous methods o f data processing. A b s u r d as is the no t ion o f the absence o f r igour i n quali tat ive research, since qualitative researchers se ldom i f ever proceed i n an " impressionis t ic , haphazard or non-sequential fashion," but rather i n a thorough and order ly manner , 1 1 0 nonetheless this supposed lack has burdened the pa rad igm w i t h l o w status and a reputation for untrustworthy results. R i g o u r i n qualitative research has pushed towards quantif icat ion and scale. Co inc iden ta l ly , Q D A software is idea l ly p laced to serve just this goa l , and can be expected to reinforce any trend towards deal ing w i t h "soft data" r i g o r o u s l y . 1 1 1 Since the t ime o f the Genera l Inqu i re r , " 2 computer techniques have p rov ided the opportunity to quantify a w ide range o f characteristics o f text. A n d the trend i n quali tat ive research i n the past decade has been towards "harder" analysis o f "soft" data. The computer offers a "Trojan horse for the inf i l t ra t ion o f the narrowest goals o f quantitative s o c i o l o g y . " 1 1 3 A n d those goals inc lude the posi t iv is t dream o f conver t ing r aw phenomena into data that can be treated sc ient i f ica l ly ; that is , objective data, susceptible to measurement and quant i f icat ion, able to be general ized beyond the sample ana lyzed . 1 1 4 Qual i ta t ive software itself, not merely its use, is instrumental i n b r idg ing the gap between 1 0 9 Hinchliffe, Crang, Reimer and Hudson, 1118 & 1119; Lonkila, 49 & 50; Richards and Richards, "Using Computers," 460; Ragin and Becker, 53. 1 1 0 Tesch, "Computer Software," 150. 1 1 1 Richards and Richards, "Transforming Qualitative Method," 39 & 40. 1 1 2 The General Inquirer was the first software for use in the qualitative field. Developed over thirty years ago for content analysis, it was unique as the first program designed to analyze text (Tesch, "Introduction," 225). 1 1 3 Richards and Richards, "Transforming Qualitative Method," 40. 1 1 4 Ibid. quantitative and qualitative methods. Some of the QDA programs include quasi-statistics,115 and many provide the facility to export data to a statistical package such as SPSS. 1 1 6 Certainly there is a "blurring" between the two methods,117 with the microcomputer providing "....a common technical ground for the meeting of qualitative and quantitative researchers."118 Possibilities Are the disadvantages noted above enough to deter researchers from using Q D A software? Is there good reason for qualitative researchers to be deterred from qualitative computing? I maintain that too much is made of the disadvantages, that these so-called constraints can actually work to enlarge a researcher's thinking about his or her project. Firstly, replacing the "tactile" with the "digital" may not be quite the loss envisioned by some qualitative researchers. The creativity that potentially comes with "feeling" the data as we shuffle through mounds of paper may itself be mythical, or at the very least, prevent other forms of creativity. The necessity to feel the data on the paper need not be denied by importing the data to the computer. There is always the possibility for hard copy, and many qualitative computer users work in both media, with data both on screen and on paper. Perhaps the digitalization of data will lead us to "see" in other ways, encouraging further creativity.119 Whilst many software programs invite coding and retrieval as a first step in analysis, code and retrieve programs are not all the same. Many diverge in analysis functions after this first step. For example, the software NUD*IST allows coding to be connected in hierarchical 1 1 5 For example NUD*IST provides a statistical summary at the base of each report, which might include, say, the number of lines or paragraphs retrieved associated with a particular code, the percentage of documents coded, or the percentage of one document coded. These statistics are of more or less importance, depending upon the weight the researcher proposes to assign to these statistics. For example, the percentage of all documents coded to various codes or categories can be important in alerting the researcher to the importance of that (those) code(s) to the study; or alternately for pointing out the deviant case in need of more detailed analysis. On the other hand, the statistics can be impossibly non-useful, for example in a word search wherein lines or paragraphs only are counted not the words themselves. 1 1 6 For example, QSRNUD*IST, ATLAS/ti, Kwalitan, MECA. 1 1 7 Bassett, Cox and Rauch, 20-23. 1 1 8 Smith and Hesse-Biber, 428; Ragin and Becker, 54. 1 1 9 Hinchliffe, Crang, Reimer, and Hudson, 1110. 47 categories, enabling the researcher to explore relations between codes and categories (see Appendix 3). NUD*IST also has links with two other qualitative software packages—Decision Explorer and Inspiration, both concept mapping programs, allowing the researcher to export her/his coding system to another format for further consideration and inspiration. Another software, ATLAS/ti, enables non-hierarchical networks to be developed, and hyperlinks between text segments to be established. And HyperRESEARCH enables the identification of coincidences and associations between codes with the use of hypothesis testing. Still other software employ other strategies, all encouraging visioning the data anew, in ways difficult to achieve in the traditional, manual method of doing qualitative research.120 Grounded theory certainly has been the prevailing approach embedded in some of the QDA software. Early articles written by the developers indicate that this has been the case.121 This does not apply by any means to all QDA software developers, however. This is a large and growing field, and the important point is to understand the assumptions embedded into the software. This means knowing something of the developer's ideas about qualitative research, regardless of whether these are based in grounded theory or another qualitative method. For example, phenomenological and ethnographical research approaches are embedded in The ETHNOGRAPH. MAX and WinMAX were developed using Max Weber's concept of ideal types and a Popperian methodological approach is integrated into AQUAD. 1 2 2 For my purposes, however, grounded theory was a useful approach. With grounded theory, the central process is coding, in which data are broken down, fragmented, conceptualized and reformulated in new ways. This coding process is used to provide the grounding, density, sensitivity and integration necessary to build explanatory theory that closely approximates the reality it represents.123 While grounded theory has been criticized as no more than a common sense view of the 1 2 0 Kelle, 2-9. 1 2 1 For example, Richards and Richards, "The NUD*IST System,"307-324; Muhr, "ATLAS/ti-A Prototype," 349-371. Lonkila has also suggested that the influence of grounded theory can be found in HyperRESEARCH and in Kwalitan, in addition to other qualitative software (p.46). 1 2 2 K e l l e , 15. 1 2 3 Strauss and Corbin, 96-142. data, detached from context and thus producing trivial knowledge, a detailed and grounded analysis allows the researcher to be immersed and fully engaged with the data rather than distanced from it. Theory is bracketed out and the data understood from the participant's point of view. And comparison of the research results with appropriate substantive and theoretical literature takes the method beyond a mere affirmation of the researcher's own biases. It has been suggested that a gap between quantitative and qualitative research has no foundation.124 Some researchers, both quantitative and qualitative, welcome the convergence, perceiving the possibility for quantitative researchers to attend more to diversity in their analyses, and for qualitative researchers to compare and contrast more thoroughly across cases.125 Computational techniques could lead qualitative research away from its traditional base towards the stereotypically quantitative. On the other hand, qualitative computing "may push qualitative research towards far more subtle, varied, powerful, and rigorous ways of doing what the method has always attempted to do." 1 2 6 On a final note: it has been suggested that the real danger with qualitative computing is applying techniques structured in the software without considering the necessary methodological prerequisites. As an example, computing invites qualitative researchers to engage in theory construction and hence hypothesis testing. Inductive hypothesis testing is seldom achieved in qualitative research, but interactive hypothesis testing is more likely. Hypothetico-deductive hypothesis testing requires coding into mutually exclusive categories. Qualitative research, by the very nature of its data, is seldom able to achieve mutually exclusive coding. Nor does it so desire. The difference rests on the idea of hypotheses as propositions which will be verified or falsified by the data, versus hypotheses as vague and general assumptions about possible relations between and across categories which may be explored, clarified or modified through a thorough analysis of the text. Unless these two very different approaches are understood by the analyst, "one can easily produce artifacts."127 Richards and Richards, "Transforming Qualitative Method," 39. Kuckartz, 158-167; Ragin and Becker, 54. Richards and Richards, "Transforming Qualitative Method," 53. Kelle, 12. 49 What seems evident in the discussion of the benefits and limitations of computer use in qualitative research is the need for an awareness, a reflexivity on the part of the researcher of the capabilities of the software program, and what that means for the analysis of his/her research project. Researchers need not be ensnared by the software program. The researcher can have control over their use of the software, abandoning it i f it does not meet their requirements. Of course, not all researchers are going to be aware of the way their research analysis is being structured by the software program they are employing. Even within the traditional techniques of manually coding and analyzing qualitative data there were always some researchers who were interested only in a "quick and dirty" approach. So too, they are there within the qualitative computing research community. Now, however, researchers can design projects that would have been unthinkable without QDA software. The code-and-retrieve model embedded in most QDA programs was the cut-and-paste of traditional qualitative research, a method that even then had serious problems.128 I found that the software allows for the "constant interrogation" of themes, both emerging and developing, enhancing theory construction and theory testing. And the "confidence and thoroughness" with which claims can be made and validated far exceeds that of traditional qualitative research.129 The advantages of no longer losing data, of being able to retain and manipulate ideas instead of being limited by the capacity of the human brain, and of being able to take advantage of new visual approaches to the whole research project, allowing innovative and creative ways to think about the data far outweigh the disadvantages of computer use for qualitative data analysis. The following chapters are the result of analysis using qualitative data analysis software. Coding of data within the software contributed to the emergence of the narratives of the media, the experts, the SCIDS founder, and the management of the conflict. These narratives are the content of Chapters Four to Seven. But first the theoretical framing for the research must be established and described. That is the content of Chapter Three. Richards and Richards, "Transition Work!" 3. Richards and Richards, "Computers in Qualitative Analysis," 165. 50 CHAPTER THREE: SITUATING SCIDS Chemicals have been used to control pests, usually insects, for thousands of years. Ashes, ground roots, road dust and sulphur have been regularly employed since the ancient Greeks.130 However, it was the industrial revolution and its aftermath of industrialization that bequeathed environmental pollution to the societies that followed in its path. Yet it wasn't until this century that industrial pollution as toxic exposure became a major problem to be faced by communities. It was the air pollution disasters of smog in Donora, Pennysylvania in 1948, London in 1952, and New York city in 1953,1963, and 1966 that brought toxic, industrial pollution, or the risk of the same, to attention as a social problem.131 It is not that risk has not been ever-present. Personal risk has always existed, accompanied by the notion of bravery and adventure. However, it is the nature of risk that has changed dramatically as society has progressed. The assault to the senses, the nose and eyes in particular, characterized risk in by-gone centuries. Risks then were localized and temporal. Today however, risks escape sense perception and remain largely invisible, unheard, without smell or feel. Rather than localized and temporal, risks now are global, and will outlast generations.132 Risks are a feature of reflexive modernity. Techno-scientific development has been proffered as the key to concealed sources of wealth and the escape from poverty and dependence. The key has turned out to be that to Pandora's box however, Beck claims, as the sources of wealth are accompanied by hidden hazards. "In advanced modernity, the social production of wealth is systematically accompanied by the social production of risks. 1 3 3 We live today in a risk 1 3 0 Hodgson et al, 4. 1 3 1 Edelstein,, 2. 1 3 2 Beck, Risk Society, 3, 8 & 9 1 3 3 Beck, Risk Society, 1. 51 society. Toxic Communities Many communities in Canada have experienced toxic risks, and many continue to do so. Among one of the first recognized industrial contaminations in Canada was the pollution of the Great Lakes. Its shores are highly populated and industrialized, with both domestic and industrial activities resulting in eutrophication of the Lakes. The St Lawrence River has also not escaped pollution. Its banks, like the shores of the Great Lakes, are similarly populated and industrialized.134 In Marathon, Ontario, historic milling operations have produced high concentrations of mercury, expelled in the mill effluent into Lake Superior. Pressure from government in the 1980's encouraged the kraft pulp mill owners to make apparent remedy by "installing a high-pressure diffusion pump and a retaining pond." This however was nothing more than a technological quick-fix, with no reduction of chemical level in the effluent released into the lake. 1 3 5 Hamilton Harbour has the distinction of being the worst in-place pollution site on the Great Lakes. The shores of the harbour are lined with huge industrial facilities, their smoke stacks contributing to air pollution and high levels of chemical effluent contaminating the lake waters, the vegetation and aquatic life to be found there. Opposite the heavily industrialized harbour area, dust and particulate matter, as well as water pollution from industrial wastes, particularly from the steel and chemical plants, contaminate the residential Beach Strip. 1 3 6 Dumping of radioactive waste from uranium milling operations, begun in 1932, is the major source of pollution in the Port Hope, Ontario region. Deposited in vacant lots and ravines Guay, 282-284; Gould, 159. Gould, 161-162. Gould, 169 & 170. throughout the area, it wasn't until 1975 that high gamma levels in and around a local school led to the "accidental discovery" of the contamination.137 One hundred and twenty-five kilometers northwest of Toronto, Ontario, is the small town of Elmira. Nestled within the town is the company, Uniroyal Chemical Ltd, a resident there for over five decades. Producing a number of chemicals together with their by-products: "noxious air emissions, toxic run-off, buried chemical drums and contaminated waste water effluent," Uniroyal Chemical Ltd was charged with destroying the town's water supply. In 1989, the local aquifer was found to be contaminated with the carcinogenic chemical, D M N A . 1 3 8 In 1985, in southwestern Ontario, fifty percent of 351 wells were found to be polluted by atrazine and other chemicals.139 The problems continue today for Ontario, with 120 communities reported to have contaminated water supplies.140 Since the 1950's, acid deposits on trees and in lakes in Canada had been noted. Studies showed that close to a large nickel smelter in Sudbury, Ontario, trees and fish were dying or were developmentally impeded. In Quebec, maple syrup producers observed the yellowing, rapid aging and slow growth of their trees. Metal smelters in both Canada and across the border in the United States together with Ontario Hydro were named as the main problem, producing the acid 1 3 8 Cameron, 297 & 298. DMNA is a trade name forN-Nitrosodimethylamine ((CH3)2N2o), a combustible liquid considered to be a potential carcinogenic ("NIOSH Pocket Guide to Chemical Hazards" http://www.cdc.gov/niosh/npg/npgd0461.html accessed 17 August, 2001) 139 Greenprint for Canada, 10. Atrazine is a herbicide used for pre- and post-emergence weed control in crops such as com and for total vegetation control in non-cropland and industrial areas. The chemical persists in soils in temperate climates for a full season or longer under average field conditions. In Canada it is ranked highest of 83 pesticides as a potential groundwater contaminant, and most daily intake is from contaminated water. Evidence is inadequate with regards exposure to atrazine and increased risk of ovarian cancer or lymphomas. It is classified as possibly carcinogenic to humans.{Guidelines for Canadian Drinking Water Quality-Supporting Documents. Health Canada. July 03, 2001). 140Susan Bourette, "Ontario water problems extensive," The Globe and Mail, July 17, 2000, sec. A l & A7. 53 rain that resulted in this contamination.141 Further afield, Regina, Saskatchewan, has a reputation as the "bad drinking water capital" of Canada. In 1982, trace amounts of DDT, 2,4D, PCBs, trihalomethanes, bacteria, and arsenic reportedly added to, or perhaps caused, the offensive odour, taste and colour of the drinking water.142 A n aquifer provided approximately one-third of Regina's water supply, and tests to wells drawing upon the underground water supply were found to have high levels of arsenic, with the highest levels found in a well near the Interprovincial Steel Pipe Corporation (IPSCO) plant. Whilst the source of the arsenic contamination is unknown, IPSCO, whose operations produce about 16 tonnes of dust per day containing arsenic and other contaminants, was 1 4 1 Guay, 284 & 285. 1 4 2 DDT is an insecticide, and was used for controlling insects on agricultural crops and disease-carrying insects. It was banned in the US in 1973, and is still in use in some parts of the world. The chemical is classified as a probable carcinogen ("DDT." Public Health Statement, Agency for Toxic Substances and Disease Registry, Division of Toxicology, Atlanta, Georgia http://www.atsdr.cdc.gov/ToxProfiles/phs8908.htmn 2,4-D (2,4-Dichlorophenoxyacetic Acid) was the first successful selective herbicide developed and became the most widely used and the most thoroughly researched herbicide in the world following its introduction in 1946. A member of the phenoxy family of herbicides, it is used in agriculture on wheat, small grains, com, rice, sugar cane, rangeland and pasture as well as on roadsides, rights-of-way, forestry, lawns and aquatic weeds. Toxicity in humans and animals is considered low; no scientifically documented health risks exist. Net economic benefit to Canada alone is estimated at a third of a billion dollars, and 2,4-D is considered a major tool in the continuing fight to reduce world hunger ("Industry Task Force II on 2,4-D Research Data." http://www.24d.org/ accessed 17 August, 2001). PCBs (Polychlorinated Biphenyls) are synthetic organic chemicals with the same basic chemical structure and similar physical properties. Used extensively in industrial and commercial applications, production ceased in 1977 in the United States due to concern over their toxicity and persistence in the environment ("PCB Background." PCB Home Page at EPA. Http://www.epa.gov/opptintr/pcb/ accessed 17 August, 2001). Acute and chronic toxic effects include cancer, neurotoxicity, reproductive and developmental toxicity, immune system suppression, liver damage, skin irritation and endocrine disruption (U.S. Environmental Protection Agency, vi). Trihalomethanes are a group of chemicals formed in water when chlorine reacts with natural organic matter. They are a by-product of chlorinated water that contains natural organics. Some studies have linked trihalomethanes to cancer and to reproductive problems. Http://www.southerndatastream.com/thm/index.html Arsenic enters groundwater from dissolution of minerals and ores and erosion of arsenic-rich rocks, from industrial effluent, and commercial use of arsenic. Symptoms and signs of arsenic poisoning differ between individuals and there is no universal definition of the disease caused by arsenic. Arsenic is a carcinogen. Relationship between arsenic and other health-effects is not clear ("Arsenic in Drinking Water." WHO Fact Sheet No 210, revised May, 2000. http://www.who.int/inf-fs/en/fact210.html accessed 17 August, 2001). suspected as the culprit.1 4 3 In Manitoba, Winnipeg's mosquito spraying programme was found to cause various symptoms and illnesses among residents. Irene Paparo-Stein, affected by the mosquito spraying, discovered others similarly afflicted when she made her symptoms public. Litigation against the city however, though prolonged, was unsuccessful.144 Also in Manitoba, in Pukatawagan, polluted drinking water causing a range of symptoms and illnesses, from skin rashes to hepatitis, in the majority of the reserve's population, was the subject of community action. A 650 kilometre protest march to Ottawa was undertaken by Pukatawagan residents. Not confined only to Pukatawagan however, native leaders expressed their concern at the state of drinking water in northern Canada communities. In Pukatawagan itself, the water treatment plant is located nearby a sewage treatment lagoon.1 4 5 In 1988 and 1989, in Newcastle, New Brunswick, soil and groundwater were found to be contaminated by the chemical benzo (a) pyrene, one of a family of polyaromatic hydrocarbons (PAHs), suspected of causing cancer in humans.146 Discovered in wells close by the Domtar Inc. wood treating plant which had closed down in 1986, Domtar Inc. was suspected as the cause of the contamination. The provincial government was not able to determine the source of the pollution. Newcastle residents were provided with a new water source, at tax payers' expense, and Domtar undertook to clean up the contaminated soil and ground water at its old site.1 4 7 1 4 3 Clare Powell, "What's WRONG with Regina's water?" citizens' bulletin, June 6, 1982,12 & 13. 1 4 4 Paparo-Stein. 145 The Vancouver Sun, 1994, sec.A. p.5. 1 4 6 Polycyclic Aromatic Hydrocarbons (PAHs) are a group of chemicals, including benzo(a)pyrene, that form during the incomplete burning of coal, oil, gas, wood, garbage or other organic substances such as tobacco and charbroiled meat. PAHs may also be manufactured for use in medicines, dyes, pesticides, asphalt, for example. They are carcinogenic ("Public Health Statement for Polycyclic Aromatic Hydrocarbons (PAHs)." Agency for Toxic Substances and Disease Registry (ATSDR). August, 1995. Http://www.atsdr.cdc.gov/ToxProfiles/phs8805.html accessed 17 August, 2001). 147 Maclean's, January 12, 1990, 41. In New Minas, Annapolis Valley, Nova Scotia, the water supply was contaminated by drycleaning fluid, 1981.1 4 8 In Sydney, Cape Breton Island, a steel plant (SYSCO) and its coke ovens have left behind the legacy of years of steelmaking, seeping toxic ooze into the backyards of Frederick Street residents. Suffering from a variety of symptoms, including birth defects, asthma, migraines, and ear infections, no compensation for residents and little clean up has been undertaken to date.149 Also in Nova Scotia, thirteen communities were reported to have water supplies contaminated by trihalomethane (THM), a byproduct of the combination of chlorine, used to treat water, and organic materials such as leaves. Water treatment facilities in these thirteen communities reportedly do not have adequate filtering systems to screen out leaves and other organic material.150 Response to toxic contamination has occurred as community and nationally-based environmental organizations and self-help groups have developed at local and/or national levels. A number of theories attempt to provide some understanding of the risk associated with toxic contamination, as well as the response (or non-response) of citizens to these threats, hazards and risks. A Theoretical Beginning In 1957, Herbert Blumer pointed out that little had been added to the field of collective behaviour since Park and Burgess introduced it in 1924.151 Blumer saw the increasing importance of collective behaviour to explain changes in an increasingly complex and highly organized 1 4 8 Jones, 932 1 4 9 Maude Barlow and Elizabeth May, "The shame of Frederick Street," The Coast, May 25, 2000,10-13. 1 5 0 Cathy Nicoll, "Unlucky 13 suffer from tainted water," The Daily News, August 04, 2000, 4. 1 5 1 Gustave Le Bon had written about crowd behaviour in 1897 (The Crowd: A Study of the Popular Mind) and is credited with being the first theorist to consider collective behaviour (See Blumer, 1955). 56 society.152 Early theories of collective behaviour focused upon the frustrations and grievances of collectivities of actors153 and how these became organized in new forms of group and institutional conduct.154 Collective behaviour was defined as occurring in undefined and unstructured situations which were outside cultural prescription. As "the behaviour of two or more individuals who are acting together, or collectively,"1 5 5 collective behaviour refers to interactions between individuals where those individuals have influence over each other. This behaviour occurs in large groups with which the individual participates and/or identifies. Group relationships tend to be impersonal, indirect and hierarchical, reflecting bureaucratic organization and directed towards authority and control.1 5 6 By no means homogeneous, theoretical explanations drew upon a variety of interpretations that in one way or another centred around individuals' frustrations and grievances.157 "Circular reaction" was the key mechanism, understood as an "interstimulation" or reflection of individuals' states of feeling.1 5 8 Circular reaction was thought to occur in conditions of unrest and disturbance in life's routines. Beginning spontaneously and individually, and experienced as discomfort, frustration, and alienation expressed through random, restless and unco-ordinated activity, social contagion was the catalyst for the organization of this behaviour as new forms of group behaviour.159 Collective behaviour theory linked individual's 1 5 2 Blumer, "Collective Behaviour," 127 & 131. 1 5 3 McAdam, McCarthy, and Zald, 695 & 696; Blumer "Collective Behaviour," 129-138; idem, "Collective Behaviour: Part Four," 170-177. 1 5 4 Blumer, "Collective Behaviour: Part Four,"177. 1 5 5 Blumer, "Collective Behaviour," 128. 1 5 6 Blumer,"Collective Behaviour,"127-130. 1 5 7 McAdam, McCarthy, and Zald, 696 & 696. 1 5 8 One individual's response reproduces the stimulation from another individual which in reflection back reinforces the stimulation from that individual (Blumer, "Collective Behaviour: Part Four," 170). 1 5 9 Blumer, "Collective Behaviour: Part Four,"170-177. 57 psychological states with individual behaviours that in the right conditions became organized collective action. Social movements Collective behaviour theory concentrated on the behaviour of crowds, the masses, and the public as precursors, though primitive, to new forms of social order. Social movements were a more advanced form of collective behaviour directed towards similar goals as the more primitive forms.160 Distinguishing between general, specific, expressive, and revival and nationalistic movements, Blumer describes social movements as "groping and uncoordinated" in their efforts at first. Unorganized, with no established leadership, membership, and little guidance and control, these early movements were the mere aggregate of individuals making individual decisions and taking individual actions.161 Dissatisfaction, hope and desire awakened by the social movement and leading to a dissatisfaction with life and a disjuncture between new conceptions and old actualities of the self may eventually crystallize and provide a specific focus for the social movement. Objectives and goals are developed, leadership emerges, together with a cohesive and "we-identifying" membership. Traditions, philosophy, values, rules, allegiances and loyalties emerge. Behaviour as well as organization solidify. Agitation by the leader arouses people's interest and participation in the movement. A sense of belonging, an "esprit de corps" develops. A "them" and "us" mentality arises and a sense of fellowship, encouraged by participation in demonstrations, rallies and so on. Group will and collective endurance are demonstrated with the conviction that the movement can make a difference and will be successful in reaching its goals.162 However, by the 1970s, collective behaviour theories were 1 6 0 Blumer, "Collective Behaviour: Part Four," 199-220; idem, "Collective Behaviour,"] 31-158. 1 6 1 Blumer considered the labour movement, the youth movement, the women's movement and the peace movement to be examples of these early or general social movements (Blumer, "Collective Behaviour: Part Four," 199). 1 6 2 Blumer, "Collective Behaviour,"145-158; idem, "Collective Behaviour: Part Four," 199-220. unable adequately to explain the movements that had arisen in the 1960s, leading to a critical rethinking of these theories.163 Resource Mobilization In the United States, resource mobilization theory emerged in the 1970's in response to the needs of both theory and practice. Protest was burgeoning, and many sociologists belonged to activist groups or were empathetic with the variety of causes. There was however, an impotence of theoretical explanation. Deliberately eschewing issues of consciousness and ideology and focusing on micro-structural accounts of movements, resource mobilization theory was principally concerned with resources (money and labour) provided by supporters; with strategy and tactics, ranging from mobilizing supporters to transforming the masses into a sympathetic public to negotiating and mediating with authorities; and the social structure within which social movement industries are situated and upon which they draw.164 Focusing on questions of recruitment, motivation and participation, resource mobilization theory introduced the rational actor model to social movement theory. According to this model, individuals weigh the costs and benefits of participation in movement activity, opting to participate when the potential benefits outweigh the anticipated costs. However, free-riding becomes a problem when movement goals are public goods which cannot be denied to non-participants. In these cases, selective incentives which are not available to non-participants may be offered to movement participants.165 Although resource mobilization theory was able to divest social movement theory of its early emphasis on pathology, it has been variously criticized. Some have suggested that the 1 6 3 Ingalsbee, 139-155; McAdam, McCarthy and Zald, 697 & 698; Klandermans, 583; McCarthy and Zald, 1212-1239. 1 6 4 Klandermans and Tarrow, 2 & 3; Klandermans, 583; McCarthy and Zald, 1212-1239. 1 6 5 Buechler, 218; Klandermans and Tarrow, 4; Klandermans, 583. 59 emphasis on a social movement's need to control resources has led to a failure in resource mobilization theory to recognize, other than superficially, the need to mobilize individuals.1 6 6 Grievances are considered a necessary, but not sufficient condition for social movement mobilization by resource mobilization theory.167 Ideology is dismissed as mere background information,168 and the emphasis on bureaucratic organizational structures is limiting. As a meso-level theory, the resource mobilization perspective has been unable to address, at the micro-level, the necessity of some social movements to offer selective incentives for recruitment, and other's ability to recruit without such incentives. The rational actor model of this perspective is problematic, based as it is on the male actor,169 who rationally weighs the costs and benefits of participation, underestimating the role of grievances and ideology.170 Collective identity as a concept has been of little interest to resource mobilization theory, and the role of culture in the construction of meaning in collective mobilization has been ignored.171 New Social Movements Meanwhile, across the Atlantic, in Europe, new social movement (NSM) theory emerged amid a different set of social and historical circumstances. Social movements were conceptualized as being brought to life only through actors' mobilizing actions.172 In contrast to resource mobilization theory, N S M theory viewed actors not as resources but as sources of collective action. New social movements struggle as much over cultural meanings as they do for material resources or political rewards. Individual and collective identity, autonomy and Ingalsbee, 139 & 140; Klandermans and Tarrow, 4; Ferree and Miller, 38-61. Johnston, Larana and Gusfield, 5-10; Buechler, 221; Klandermans and Tarrow, 4. Buechler, 222; Ferree and Miller, 41 & 42. Buechler, 225-228. Brown and Ferguson, 164;Buechler, 227; Klandermans and Tarrow, 9; Klandermans, 584. Buechler, 222-231. Ingalsbee, 142-146; Melucci, "A Strange Kind of Newness," 342. 60 solidarity, as well as ideology are a central focus for N S M theory.173 New social movements break with the traditional values of capitalist society, and establish new values related to work, consumption, and the body. Self-actualization and participation appear to have replaced material needs, the traditional work ethic is eroding, and attitudes towards work and career changing. In addition, loss of identity, of traditional ties and loyalties are considered the outcome of increasing industrialization and bureaucratization. The result is vulnerability/receptivity to visions of new Utopias and new commitments.174 N S M action tends to be unconventional, and decentralized, antihierarchical democratic organization is favoured. The constituency of NSMs are the non-stratified, marginalized, and those, middle class and well-educated, who are paying the price of sensitivity to the problems of modernization.175 Critiqued for moving too hastily towards "cultural" explanations, some theorists have admonished N S M theory for abandoning concepts of political economy and power relations too readily.1 7 6 The idea of contemporary social movements as "new" is argued,177 and as a representation of middle class interests, debated.178 In addition, N S M theory it is claimed, provides little in the way of strategies for social movement activists.179 Further, identity formation as a focus and politics for NSMs has led to an anti-politics of navel-gazing, a substitution for engagement with the structures of power, it has been suggested.180 1 7 3 Brown and Ferguson, 165; Ingalsbee, 142-146; Scott, 13-35; Klandermans and Tarrow, 7. 1 7 4 Klandermans and Tarrow, 8. 1 7 5 Klandermans and Tarrow, 7. 1 7 6 Adam, 316-336; Klandermans and Tarrow, 9. 1 7 7 Weir, 73-102; Bagguley, 27-48; Cohen and Arato, 510-52; Melucci, "A Strange Kind of Newness," 104-109. 1 7 8 Bagguley, 27-48. 1 7 9 Barbara Epstein, 35-65. 1 8 0 Kauffman,67-80. 61 The Toxic Waste Movement Some theorists have pointed to the inability of either resource mobilization or new social movement theories, or their hybrids, to be able to explain and provide understanding of some social movements. There are some social movements that do not fit either model, it is maintained. The predominant two social movement theories have been developed to explain a finite number of social movements that also happen to coincide with the major movements in contemporary collective behaviour-movements such as the environmental, women's, and peace movements for example. The toxic waste movement is one social movement for which resource mobilization and new social movement theories are questionably applicable.181 Whilst the toxic waste movement may be considered part of the environmental movement, in fact it differs in many ways from the latter. The toxic waste movement is a proliferation of groups dedicated to the prevention and/or remediation of localized and immediate threat of toxic waste. With no national organization, the movement is highly decentralized, and focuses on local causes, impacts and solutions. Not organized by professional organizers, groups spring up spontaneously, often starting with rage or personal loss, and without the likelihood of specific rewards. Although considered part of the environmental movement, the toxic waste movement differs in terms of its local focus in contrast to the wider environmental movement's concern with destruction on a global scale.182 Citizen's groups against toxic waste represent a powerful grassroots movement which has grown exponentially since the Love Canal incident in 1978. In 1981, Freudenberg identified two hundred and forty-two community organizations in a survey to identify the parameters of the movement. The Citizen's Clearinghouse for Hazardous Waste, formed after Love Canal, had had contact with six hundred organizations by late 1984, and by 1990, with five thousand active 1 Brown and Fergusson, 145-172; Brown and Masterton-Allen, 269-287. 2 Brown and Ferguson, 145-172; Brown and Masterton-Allen, 269-287. 62 citizens. The toxic waste movement has also been instrumental in numerous local and national victories, such as the SuperFund legislation in the United States.183 Toxic waste organizing is predominantly led and undertaken by women. Typically working or lower middle class, often mothers with young children, women in the toxic waste movement have not previously been politically active.184 An enormous amount of their time is spent organizing around the debilitating effects of disease. Situated in their traditional role as mothers, it is women who make the link between toxic-related hazards and their children's i l l -health. The extended networks, the "more-extended family" 1 8 5 that working class women draw upon as resources of survival for themselves and their families, become the same networks and resources that allow them, in discussion with others, to discover patterns in illness, the beginnings of a popular or lay epidemiology if you will . For example, at a Tupperware party in a local Detroit community, women discovered a particular pattern of health problems.186 These early beginnings of an epidemiology often lead to a more serious engagement, by toxic waste activists, with lay science or "popular epidemiology," challenging professional and scientific knowledge.187 Community-based grass-roots environmental groups represent a new trend in the larger environmental movement suggest Cable and Benson.1 8 8 Their focus is specifically local environmental problems, and their pursuit, environmental justice rather than environmental reform. They are citizen-initiated responses to what is seen as the failure of the state to protect community well-being. Local residents notice local conditions which are a part of their everyday lives-quality of air and water for example. Corporate production processes which result in Masterton-Allen and Brown, 485-500. Brown and Ferguson, 145-172; Brown and Masterton-Allen, 269-287; Krauss, 247-262. Krauss, 252. Krauss, 254. Brown and Masterton-Allen, 269-287; Krauss, 247-262. Cable and Benson, 464-477. 63 pollution over time provoke a sense of injustice in community members who perceive regulatory controls and processes as ineffective. The state, responsible for both public welfare and facilitating corporate economic objectives, may be seen as siding with industry. Confronted with this perceived failure of formal systems to protect the ordinary citizen, grass-roots organizations develop and mobilize to challenge the effectiveness, integrity and motives of authorities.189 Environmental and Social Justice Environmental justice refers to the greater risk of environmental contamination experienced by some populations, particularly minority groups.190 In addition, these populations suffer more from environmental nuisance (for example, having waste management facilities located in their neighbourhood), and do not have the access to policy-making and decision-making processes that dominant groups enjoy.191 The environmental justice movement is the convergence of the civil and environmental rights movements. Its beginnings are in the United States in the 1980s, embedded in the right of people to a safe environment, to the continued existence of wilderness, and to the equitable distribution of both benefits and effects of environmental protection and degradation. Government was charged with ensuring these. In addition, the advent of the right-to-know legislation in the 1980s in the United States meant that neither government nor industry could exclude citizen access to information and decision-making processes. A key factor in environmental justice is the recognition of race and income in environmental injustice. In 1987, the United Church of Christ's report emphasized race over income. Almost 80 percent of Blacks and 65 percent of Hispanics compared to 55 percent of whites live in areas in the US that do not comply with the Clean Air Act standards at least part of 1 8 9 Ibid. 1 9 0 Clarke and Short Jr., 375-399; Sarokin and Schulkin, 121-129. 1 9 1 Ibid. 64 the year, for example.192 Other work in environmental justice has found class, race and ethnicity to be important. Krauss's interviews with working class white, African American and Native American women in the toxic waste movement showed that the analyses of these activists were mediated by issues of class, race and ethnicity. For white working class women, disenchantment with government and the injustice of a system that will not protect their families from environmental contamination are reflected in a deep sense of loss, betrayal and hurt. Previously not politically active, these women were transformed into self-confident, assertive political activists in their experience in challenging the system. For these working class women, the definition of environmental justice that developed was rooted in class issues.193 African American working class women already view government with mistrust, having experienced racist policies previously. Toxic waste issues are immediately framed as environmental justice issues and linked to social justice issues such as jobs, housing, crime. Environmental justice is a civil rights issue, requiring the resolution of the broad social inequities of race.194 A genocidal analysis, rooted in colonialism, cultural identification, and the ever-present inherent threat to their culture are aspects of Native American women's analyses of environmental justice. As with African American women, Native American working class women have no illusions of a charitable, protective state. For both African American and Native American women, definitions of environmental justice are rooted in race rather than class 195 issues. Sarokin and Schulkin, 121-129; Wernette and Nieves,16-17. Krauss, 247-262. Krauss, 247-262. 65 The experts Attaining goals for both environmental justice and toxic waste groups may involve a citizen-expert alliance, serving two purposes: firstly scientific legitimacy of the group's claims, and secondly as a means of self-education. Experts associated with a social movement may be establishment intellectuals, outside the social movement, but important in the creation of social space for the movement to emerge.196 Challenges to the authority of government and the motives of corporations, exposing failure to prioritize public safety over profits, and denial and inaction " in response to community concerns, are part of both environmental justice and toxic waste movements' repertoire.197 At the same time however, government and industry may also parade experts before the local community to legitimize decisions. Scientific knowledge and the authority that accompanies it are powerful resources that may be marshaled by each side.1 9 8 There may well be a number of different lay perspectives as well as a number of expert viewpoints. Experts are defined as those individuals, who by virtue of their technical training within an academic discipline, have expertise legitimated by the authority or prestige of science.'99 This expertise is used in the making of public policy; science moves from the laboratory to decision making, from the world of scientific practice to the daily practice of political life. 2 0 0 Most often, experts brought into the fray in relation to the toxic waste and environmental justice movements are concerned with the allocation of risk. Couto suggests that these experts are part of a community of calculation, consisting of a community of consequence calculation, those officials, public and private who allocate resources related to environmental health risks including pollutants and toxicants, and a community of probability calculation, which includes 1 9 6 Eyerman and Jamison, 94-119. 1 9 7 Albrecht, 67-72; Masterton-Allen and Brown, 485-500. 1 9 8 Albrecht, 67-72. 1 9 9 Chociolko, 3 2 0 0 Salter, 55. 66 epidemiologists.201 Experts have, by virtue of the status and authority endowed from the pursuit of truth as a scientific endeavour, been conventionally considered neutral arbiters of the issues under consideration, reflecting an unbiased view. 2 0 2 The changing relationship between experts and the public, the loss of trust in expert systems, and the collapse of the "grand narrative" within which the legitimacy of science resides, has made the authority of the expert much less automatic.203 Studies investigating the role of the expert in policy and decision making related to risk reveals that experts are as much prone to unstated assumptions and mindsets, or heuristic bias, as are the lay public. Experts may be influenced by the framing of a problem prior to their involvement, for example a problem that has public prominence. Experts may have a stake in the outcome of the analysis or decision. They may overestimate easily recalled events and underestimate less dramatic and less vivid events; may fail to adjust original estimates in light of new information, or be more certain about probability estimates than their knowledge can justify. 2 0 4 Clarke has referred to these biases as a disqualification heuristic that leads experts and decision makers to neglect information that contradicts a conviction, for example that a sociotechnical system is safe.205 It is heuristic in diminishing uncertainty and permitting a sense of control over sociotechnical systems. It disqualifies disconfirming information, critical data and viewpoints, while highlighting confirming information. The disqualification heuristic channels information about risks so that decision makers are protected, in a sense, from seriously considering the likelihood of catastrophe. It is a source of organizational naivety, narrowing the range of alternatives available for consideration so that 2 0 1 Couto, 56 & 57. 2 0 2 Salter, 64. 2 0 3 Jennifer Brown, 5 & 6. 2 0 4 Clarke, 304-307. 2 0 5 Clarke, 289-311. 67 particularly troublesome ones are relegated to secondary, even trivial status.206 Whilst Hannigan suggests that technical experts set an agenda for risk which includes the lay public only as an afterthought, or late in the decision making process, others suggest it is the outrage and/or activism of the lay public that brings experts into play. 2 0 7 Calculating risk The expert's role in environment and health, whether as a scientist working within their discipline, or as an expert involved in policy and decision making, is in relation to the calculation of risk. Risk itself is defined according to both the discipline and the theoretical frame within which it is studied. The field of risk studies began as a fact gathering exercise.208 Technical risk analyses objectively observe or measure the physical harm to humans or ecosystems by appropriate scientific methods. Actuarial analysis, toxicology and epidemiology, and probabilistic risk assessments anticipate actual harm to human beings or ecosystems, average such events over time and space, and employ statistical frequencies to specify probabilities.209 Risk then is a multiplication of probability of events and consequences.210 A normative approach, these technical risk analyses are instrumentally used to reveal, avoid or modify the causes that lead to unwanted effects, and are employed in decisions about risk sharing and risk reduction.211 Technical risk analyses however have been criticized for excluding social context and meaning.212 Values and preferences influence what people perceive as an undesirable effect. 2 0 6 Ibid. 2 0 7 Hannigan, 92-108; Brown, "Popular Epidemiology," 267-281. 2 0 8 Krimsky, 4-6. 2 0 9 Renn, 53-79. 2 1 0 Rayner, 85; Paul Slovic, 118-121. 2 1 1 Renn, 53-79. 2 1 2 Irwin, "Technical Expertise and Risk Conflict," 339-364; Renn, 67-79; Wynne, "Unruly Technology," 147-167." 68 Interactions between human activities and consequences are more complex than the single dimension of technical risk analyses. In addition, experts work on the basis that mitigation or reduction of risk should be in proportion to the expected harm to human beings, whereas lay people incorporate objectives such as fairness, equity, flexibility and/or resilience to the goal of risk minimization. Risks may also be increased by organizational failures and deficits in the management and control of risk. Consideration of organizational failures and deficits is excluded from technical risk analyses.213 Given that technical risk analyses neglect the social processing of risk, a number of social theories of risk have developed in the past two decades.214 Since lay people did not always base their decisions on mere fact alone, social scientists have asked why it is that people fail to follow the advice of experts in responding to the risks of contemporary society.215 The economic concept of risk transforms undesirable effects into subjective utilities. Focusing on degree of satisfaction or dissatisfaction associated with potential consequences, this cost-benefit analysis however has been criticized as a naive version of the rational actor paradigm. People provided with full information about risks do not always act in accordance with that information. People smoke, drink alcohol, and engage in activities that do not provide any utility for them. As well, the reliance on utilitarian ethics in economic theory is considered problematic in relation to risk allocation. In utilitarian ethics resources are allocated so as to maximize their utility for society, so that for example a poor community would accept the siting of a hazardous waste facility in their community in order to increase employment potential for its members, accepting a risk in exchange for money, whilst the wealthy community would not be 213Jennifer Brown, 13-15; Renn, 58-61. 2 1 4 Funtowicz and Ravetz, 253; Irwin, "Technical Expertise and Risk Conflict," 339-364; Krimsky, 4-6; Macgill, 48-50; Renn, 53-79; Slovic, 118 & 119; Wynne, "Unruly Technology," 147-167; Idem, "Frameworks of Rationality," 42-47. 2 1 5 Krimsky, 5; Renn etal., 137-160. 69 exposed to the risk. 2 1 6 Perceiv ing r isk Psychological theories of risk focus on how people perceive risk, and why they make the decisions they do in relation to risk. 2 1 7 Public perceptions of risk are of far more import than the technocratic view recognizes and require more serious exploration.218 Risk in perception theory is a subjective concept, not existing "out there," but constructed by individuals to cope with the dangers as well as uncertainties of life. People are risk averse if the potential losses are high, and risk prone if the potential gains are high. In addition, many people pursue a risk taking strategy that balances a satisfactory pay off against the avoidance of a major disaster. Biases in the intuitive processing of uncertainty favour the most readily recalled information about events, and contextual variables, such as beliefs associated with the cause of risk, shape individual risk estimations and evaluations.219 The psychological perspective on risk provides an understanding of individual responses to risk, however it is difficult to aggregate individual responses and to find a common denominator for comparing individual risk perceptions.220 Further, the perceiver of risk is a passive, not an active, agent. The individual is perceived as receiving information about risk and in no way involved in developing a shared meaning of risk with other individuals, institutions, and communities.221 Lacking also is the effect of societal structure and organization on individual perceptions and decisions about risk. 2 2 2 2 1 6 Renn, 61-64. 2 1 7 Jennifer Brown, 1-18; Renn, 64-67. 2 1 8 Macgill , 48-53. 2 1 9 Renn, 64-67; Slovic, 120. 2 2 0 Renn, 64-67. 2 2 1 Rayner, 85 & 86. 2 2 2 Douglas and Wildavsky, "How Can We Know The Risks We Face?" 49-51; Renn, 67-72; Slovic, 146-152. 70 Cultural bias and/or particular way of life are implicated in what and how individuals select to fear, Douglas and Wildavsky suggest. The risks selected for worry and concern are functional to society by strengthening one particular lifestyle and weakening another. Whatever objective risks may exist, social organizations will emphasize those that reinforce the moral, political and religious order that holds the group or society together.223 Cultural risk analysis is informed by group/grid analysis, first developed by Mary Douglas in 1970, and further elaborated by Michael Thompson224 in conjunction with risk preferences in West Germany around the nuclear energy debate. Group refers to the degree (weak or strong) to which the individual is socially incorporated into a social unit, whilst grid refers to the constraining nature of the social interactions within the group, including hierarchy, gender, race, age and so on. Very different ways of seeing risks is implied in the conjuncture of group and grid. 2 2 5 Cultural theory of risk however has been criticized as cultural relativism and solipsism. According to this criticism, the cultural theory of risk suggests that the knowledge created in one social circumstance is entirely self-validating and incommunicable to members of any other group or society. In addition, one person's theory of the world is claimed to be as valid (as a scientific truth) as another's.226 Funtowicz and Ravetz2 2 7 suggest that this cultural relativism and solipsism may lead to social irresponsibility in facing threats to life and limb arising from technology and the environment. Rayner however retorts that public knowledge must always be evaluated as part of the social system, the workshop, the laboratory, the community that creates and sustains it. This is not to deny the role of natural phenomena that constrain experience and knowledge and that feedback into the knowledge process. However, although some of these 2 2 3 Douglas and Wildavsky, Risk and Culture. 2 2 4 Thompson, "Aesthetics of Risk: Culture or Context?" quoted in Rayner, 84. 2 2 5 Rayner, 87-93. 2 2 6 Rayner, 98-102. 2 2 7 Funtowicz and Ravetz, 258-263. 71 phenomena may exist independently of the culturally-created concepts of them, they may be knowable only through one or another cultural version of them.2 2 8 The cultural theory of risk has also been criticized as stereotyping people as part of the system of social classification and management of risk. In addition, the theory is considered culturally deterministic or imperialistic.229 Culture is seen as locking people into a certain worldview. And further, cultural theory is seen as inherently conservative, possibly allowing industry to bypass liability claims on the basis that the claim is only the opinion of the claimant and no others, or that environmental fears are irrational.230 A lack of empirical evidence in support of its validity, too, continues to plague cultural theory.23' Development of risk studies as a series of disjointed, unintegrated theories, most of which are in disagreement, has caused some theorists concern at the direction of the field. In 1988, a new framework called "the social amplification of risk" was unveiled.2 3 2 This framework maintains that the interaction of events pertaining to hazard with psychological, social, institutional and cultural processes can increase or decrease perception of risk and shape risk behaviour. Behaviour in turn generates secondary social and economic consequences that extend far beyond direct harm to human health or the environment. For example, liability, insurance costs, and loss of confidence in institutions often trigger demands for additional institutional response and protective action.2 3 3 Attempting to include the gaps criticized as being evident in other theories, risk in amplification theory is seen as both an objective threat of harm to people and a product of culture and social experience. The experience of risk is both an experience of physical harm and of 8 Rayner, 98 & 99. 9 Renn, 76; Kasperson, 154-157; Nelkin, 95-113. 0 Rayner, 111-113. 1 Renn, 76. 2 Kasperson, 153-176; Renn etal., 137-160. 3 Kasperson, 153-176. 72 cultural and social processes whereby individuals and groups create, acquire or interpret meanings of risk and hazard.234 Risk amplification is the process of communication and interpretation that occurs following an environmental or technological event or report. A n analogy is drawn with the rippling effect from dropping a stone into a pond. 2 3 5 It has been suggested that human and social processes may lead not only to amplification, but to attenuation of risk as well . 2 3 6 The electronic analogy inherent in the diagram of the amplification process too, has been criticized as too passive to account for human behaviour in its complexity.2 3 7 As well, the focus on how responses to risk events are amplified or attenuated, takes as given, the risk object. Further, the theory's usefulness for generating hypotheses and directing empirical research has been questioned.238 Constructing risk Turning the risk object itself on its head, that is not taking it as a given as most of the above theories do, is social constructionism. This perspective focuses attention on those who, through definitional activities, create and use boundaries to demarcate risk. 2 3 9 Attention is on who does the constructing. Following Latour and Woolgar's work on the construction of science in the laboratory, Wynne for example, looks at the processes involved in the construction of technology and the discourse of experts in relation to that technology. Discussing the technical-social constitution of technologies, Wynne points to the public, rationalist discourse of professionals that leaves invisible the ad hoc decisions, the private negotiation of rules, regulations and practices that occur with use of technology, and that contribute to knowledge Kasperson, 158; Renn et al, (1992). Kasperson, 158, 160 & 161. Rip, 193-197. Kasperson, 176-178. Kasperson, 176-178. Hannigan, 92-108; Clarke and Short, (1993); Schneider, vii-xix. 73 about the technology. The result when accidents occur is for blame to be laid at the feet of an individual (or team of) expert(s), rather than recognizing that the fault may stem from the process of producing scientific, technical, medical, or engineering knowledge and artifacts.240 Palmlund 2 4 1 points out that the societal evaluation of risk is a contest where the participants offer differing, and competing, views of reality. Thus the environmental movement and scientists for example debate their differing definitions of reality. Environmental health groups such as the toxic waste movement will draw upon science in the form of a lay or popular epidemiology to develop their own definition of the situation and the problem, in contrast to that of the scientists and experts.242 Medicalization of social problems has expanded the field of social construction theory, but until recently, little attention had been given to the scientization of social problems.243 Science is a claims-making activity, a negotiated order resulting from the processes of social interaction.244 This is an important aspect of the construction of risk which generally draws upon science in one way or another, often with contested views between differing science specialties as they vie for ownership of the problem. Ownership of the problem confers authority to manage or solve the problem, to influence public opinion, and to have ideas and information about the problem receive a high amount of visibility and legitimacy.245 It is not enough to merely define risk as a scientific understanding and not understand how individuals living in the world actually experience that risk, suggests Williams. 2 4 6 Drawing upon Schutz, Williams presents a modified social construction approach. In order to define or 2 4 0 Wynne, "Unruly Technology," 147-167; Idem, "Frameworks of Rationality," 33-47. 2 4 1 Palmlund, 179-195. 2 4 2 Brown and Masterton-Allen, 269-287; Williams and Popay, (1994); Krauss, 247-262. 2 4 3 For example, Gusfield's work on the social construction of alcoholism as both a medical and welfare state services problem ("On the side," 31-49; "Ownership of Social Problems," 431-441) and Brown's work on diagnoses as constructing social problems as medical ("Naming and Framing," 34-52). 2 4 4 Aronson, 1-29. 2 4 5 Gusfield, 431-441. 2 4 6 Williams, 476-497. 74 frame an environmental or social problem, attention must first be turned towards it, and second, an attempt made to make sense of it. In order to undertake the latter, we draw upon an already constituted stock of knowledge, which is then reconstituted from our experience and understanding of the current problem. Claims-making among groups, and claims for attention between social problems, may mean constituted stocks of knowledge are subtly shaped by powerful interests into a latent ideology, in turn impacting individuals' experience of the problem or risk. 2 4 7 A constructive addition to the social construction approach to risk might be that of social dramaturgy, which suggests that in addition to consciously turning attention to the problem of risk, and making sense of it, participants also position themselves to an audience. Responses and decisions are always made in reference to one or more audiences, who might consist of the groups that are threatened, the people who speak and act politically on their behalf, the group that produces and uses the technology, and/or the mostly complacent citizenry at large.248 Conclusion Positions and theories on risk take for granted that the risks we confront are known. They do not recognize that we live in a risk society where we know not what risks abound. Hazard and risk are calculated quantitatively, based on probability estimates, limited to technical manageability. Risks which are not yet technically manageable, not yet scientifically calculable, do not exist. In addition, risks today generally are not knowable from experience. Not only do we not know the risks, but we have no say in matters of risk that affect us, such as acceptable levels or length of exposure. These are determined by the community of calculation who allocate risk. 2 4 9 They determine each person's potential affliction. How much is safe, how long the Williams, 476-497; Hannigan, 76-91. Palmlund, Couto, 55 & 56. 75 exposure permitted, the symptoms, all these are the cognitive property and practice of experts. Knowledge of risk is dependent on the knowledge of experts.250 The following four chapters examine the point of view of both the community of risk calculation and risk allocation, and that of an individual exposed to risk, as well as the media story of the environmental conflict that ensued between the two groups. I begin with the story of an individual involved in the controversy. Beck, Reinvention of politics, 12. 76 C H A P T E R FOUR: B O D Y O F K N O W L E D G E : A SCIDS N A R R A T I V E The SCIDS group founder's symptoms began seemingly with a taken-for-granted everyday experience. What ensued she at first considered as particular to herself. Private lives operate at a purely personal level. Within the myopia of the private life, the individual experiences problems, what C. Wright Mills refers to as troubles, as personal and private. Troubles have to do with the self, and with the immediate circumstance in which the individual experiences them. Their resolution appear to the individual to lie with themselves and within the immediate social milieu. It wasn't until a visit to the local orthopaedic specialist that the SCIDS group founder became aware that there were others with similar experiences. The milieu of private troubles exist within a historical time. Private troubles are part of a biography that is lived out in a historical sequence. Individuals are "minute points of the intersections of biography and history within society," suggests C. Wright Mi l l s . 2 5 1 This chapter focuses largely on a private trouble, that of the SCIDS group founder. It begins with a narrative which reconstitutes the sequence of events that unfolded at this particular interxection of biography, history and society.252 The SCIDS story A taken-for-granted, everyday movement of her arm r e s u l t e d i n the l o s s of the use of the forearm and r i g h t s ide of her hand. Ne i t h e r her f a m i l y doctor nor a s p e c i a l i s t could determine why. A comment from one of the p h y s i c i a n s about s i c k b u i l d i n g syndrome l e d her to throw away anything i n her home that might cause an a l l e r g i c r e a c t i o n . Headaches were beginning now, s t e a d i l y i n c r e a s i n g u n t i l they became severe migraines. At t h i s p o i n t they s t a b i l i z e d , not g e t t i n g any worse, i f that were p o s s i b l e . S e i z u r i n g had a l s o begun and had progressed to four or f i v e times 2 5 1 Wright Mills, 3-13. 2 5 2 As this chapter draws upon one interview only with the founder of the SCIDS group, some repetition can be expected between the narrative which follows and quotes from the interview. The narrative, however, provides an overview of the whole case, the later quotes interspersed throughout the discussion address specifics and detail. 77 a week. And nobody knew why. A t r a c e of her medical h i s t o r y unearthed, b u r i e d i n her mind, that she had been sprayed w i t h Malathion back i n '85. She remembered that her second c h i l d had d e l i v e r e d a number of weeks e a r l y , j u s t a f t e r the spraying i n c i d e n t . She r e c a l l e d that the f a m i l y doctor had s a i d i t was the Malathion. Now, four years l a t e r , her two c h i l d r e n were unable to go outside because her i m m o b i l i t y and s e i z u r i n g imprisoned not o n l y her, but them too. P r o g r e s s i v e l y she l o s t the use of both her arms, one from i n j u r y , the other from overuse, compensating f o r the other's l a c k . And then i t s t a r t e d i n t o her l e g s , and she progressed t o canes, and then when they could no longer h o l d her, to a wheelchair. Her body wasted away and she became needle t h i n . S p e c i a l i s t a f t e r s p e c i a l i s t , t e s t a f t e r t e s t , a v i s i t or two to a n e u r o l o g i s t , a p s y c h o l o g i s t , an orthopaedic surgeon, and s t i l l nothing c o n c l u s i v e was found. The symptoms were s i m i l a r t o chronic f a t i g u e syndrome, to m u l t i p l e s c l e r o s i s , and yet d i d not match e x a c t l y the c l u s t e r of symptoms r e q u i r e d f o r d i a g n o s i s to e i t h e r of these. A l o c a l orthopaedic surgeon noted that she was one of many s i m i l a r cases he had seen i n the past h a l f decade. He began d e l v i n g i n t o these p a t i e n t s ' medical h i s t o r i e s , searching f o r a p a t t e r n that might suggest cause. Chemical spray was the o n l y p a t t e r n he found at t h i s time. Some of h i s p a t i e n t s wanted to know i f others a l s o s u f f e r e d from the same symptoms. He put them i n touch w i t h each other. She r e c e i v e d a phone c a l l from someone s u f f e r i n g s i m i l a r symptoms to hers. Then the c a l l s began to increase. She and a couple of others c a l l e d a p u b l i c meeting and formed a group, to provide support and to f i n d i n f o r m a t i o n , something, anything t h a t would t e l l them they hadn't gone crazy. A core group of three i n i t i a l l y , expanding to seven l a t e r , were i n constant contact by phone wi t h the M i n i s t r i e s of Health, A g r i c u l t u r e , and the Environment, asking questions, seeking i n f o r m a t i o n that might b e t t e r help them to understand t h e i r symptoms and themselves. Meetings of the group were held monthly w i t h around s i x t y to seventy people a t t e n d i n g . Membership of the group g r a d u a l l y increased to f i v e hundred over a three year p e r i o d . Together they helped each other, sometimes d r i v i n g others to doctor's appointments, sharing wheelchairs and m o b i l i t y a i d s , l o c a t i n g and d i s t r i b u t i n g a r t i c l e s about s i m i l a r i l l n e s s e s or symptoms, and becoming a "sounding board" f o r those who could not f i n d answers from the medical p r o f e s s i o n . They networked w i t h other environmental and h e a l t h groups i n the province and across the country. They needed to know what was wrong, "to get to the other s i d e of i t . " Coining a name, Somatic Chemically Induced Dysfunction Syndrome, SCIDS f o r short, helped. The name gave a p o i n t of reference from which the i l l n e s s could be discussed, a p o i n t w i t h which to i d e n t i f y , a p o i n t from which to t h i n k about s e l f . The name s a i d something about not j u s t the i l l n e s s , but 78 a l s o the diseased body. And government departments at both f e d e r a l and p r o v i n c i a l l e v e l s now seemed able to recognize the group. S u r p r i s i n g what a name w i l l do. Although there was no a u t h o r i t a t i v e book on the s u b j e c t , or a l i t e r a t u r e about SCIDS to t u r n to as others w i t h m e d i c a l l y recognized i l l n e s s e s do, there was r e l i e f i n naming. The nausea, f a t i g u e , muscle weakness, s e i z u r e s , and atrophying muscles, suddenly made sense. GreenPeace contacted the group. Aghast, they sat down and discussed the involvement of such a r a d i c a l group i n t h e i r s m all f i g h t . Forget i t , they s a i d . Being l a b e l e d as f a n a t i c s won' t do t h e i r cause any good, they reasoned. They wanted to work w i t h government, not against them. They b e l i e v e d that science would win out and government would see the t r u t h , acknowledging t h e i r problem and t a k i n g r e s p o n s i b i l i t y f o r i t . Her hopes soared when i t was announced that a U n i v e r s i t y of B r i t i s h Columbia e p i d e m i o l o g i s t would conduct a study i n t o the syndrome. They flagged w i t h the f i r s t i n t r o d u c t i o n to him when she r e a l i z e d h i s o p i n i o n was already formed, that he knew what he wanted from the t e s t r e s u l t s . She wasn't s u r p r i s e d , d i s a p p o i n t e d perhaps but not s u r p r i s e d , when he declared that the r e s u l t s showed that SCIDS d i d not e x i s t . J u s t another set back i n a long l i n e of dashed hopes. I t seemed to her that everything was against them. She had been e x c i t e d when the F l o r i d a t o x i c o l o g i s t had come to town to i n v e s t i g a t e the p o l l u t i o n that might be causing her's and other's symptoms. I t was wonderful to be able to t a l k t o someone who understood the problem from her p o i n t of view; someone she didn't have to convince. Yes, he was b r i l l i a n t , but sadly, h i s p r e s e n t a t i o n of f i n d i n g s was not. His c r y i n g and t e a r s when he p u b l i c l y reported back to the community was lambasted by other s c i e n t i s t s and o f f i c i a l s . I t became apparent to her that anyone who could l e g i t i m i z e t h i s i l l n e s s and i t s symptoms was to be d i s c r e d i t e d or was cast as biased. The p l a y i n g f i e l d was not l e v e l . Her s u s p i c i o n s magnified, her m i s t r u s t of government i n t e n s i f i e d . She became dejected. Her symptoms continued to worsen. She r e a l i z e d her f a m i l y needed her as a healthy human being, not t h i s b a r e l y f u n c t i o n i n g but f i g h t i n g i n d i v i d u a l . She had wanted answers. Her search had been thorough she thought, and there had been some successes on the way, but her energy was sapped. I t was time to leave the group and concentrate on h e r s e l f now. A couple of months a f t e r the t o x i c o l o g y and epidemiology r e p o r t s she stepped down as spokesperson of the group. The SCIDS group continued f o r a w h i l e , but foundered e v e n t u a l l y , before the year was out. I t bothered her to see i t e x i s t no more, but she was not i n a p o s i t i o n to take i t on again. She thought about t h e i r achievements: d i s t i l l e d water c o n t a i n e r s i n s t a l l e d i n p u b l i c p l a c e s ; p u b l i c speaking about the i l l n e s s she continues to s u f f e r ; r e c o g n i t i o n on the s t r e e t that s a t i s f i e d her that awareness of the i l l n e s s has been r a i s e d . So perhaps i t wasn't f o r naught, she sighed, as she returned to her everyday 79 r o u t i n e of working her muscles, co n c e n t r a t i n g on s t a y i n g out of the wheelchair and o f f canes. For j u s t a moment the thought l i n g e r e d that she might get in v o l v e d i n the h e a l t h board r e s t r u c t u r i n g . Soon perhaps, soon. 2 5 3 The diseased body In biomedicine, disease is located in the body as a physical object or physiological state. One of the central tenets of biomedicine is that objective knowledge of the human body and of disease are possible apart from subjective experience. Historically, until the eighteenth century, bodies were seen as receptors as well as generators of social meaning. Bodies were understood as open to the "interpretive demands of culture." In the eighteenth and nineteenth centuries, the progress of science shifted the perspective of the body as a manifestation of self-identity and difference to the very basis of identity and social divisions. With the Enlightenment came the questioning of man's natural domination of the social order. Bodies were redefined by medicine to explain social inequalities. For example, women's bodies in particular were subject to re-definition as being unable to withstand the rigours of physical and mental exertion.254 The Enlightenment concern with rationality also contributed to the separation of the mind and body. The purely conceptual or mental was privileged over the corporeal. The body became an object of investigation that existed independently of any knowledge of it, presumed a "reality" resistant to misinterpretation and misrepresentation. The object was/is posited as external to and autonomous from subjects.255 Associated with the changed view of the body was the belief in objective knowledge of disease. In the nineteenth century, disease was located internally, in the body. However, until the late nineteenth century, an exogenous theory of disease was accepted. Foul air working in a slow and insidious fashion was believed to cause disease. This disease-causing atmosphere was called "miasma." The theory was overturned however by Pasteur and Koch in 1880 who successfully 2 5 3Third person narrative constructed by the researcher from the interview with the founder of the SCIDS group. 2 5 4 Good, 116-118; Shilling, 41-69; Laqueur, 63-113. 2 5 5 Grosz, 26-31. postulated the role of germs in illness causation, locating disease inside the body. 2 5 6 Medical knowledge is the objective representation of the diseased body. The diseased body is the physical object of medical knowledge. Medical knowledge rests upon the concept of disease; the experience of illness is the basis of lay knowledge. As medicine became more scientistic, the patient's view was excluded, marginalised. Perceived as subjective, it was thought to compromise the objectivity that had become the basis of medical knowledge.257 The body: from object to subject to object People live in a "common sense" reality rather than a scientific reality. Here objects are taken-for-granted rather than submitted to critical review. One such object is the body. The body is experienced as the author of its activities, as the agent of on-going actions, and thus as an "undivided total self." Both body and mind are complex aspects of an indivisible being. We act in the world through our bodies; our bodies are the vehicle through which we experience, comprehend and act upon the world. We do so in a mode of near self forgetfulness about our body, what Sartre called "passed over in silence." It is not that we are unaware of our bodies but that we need to forget our body as we go about our everyday activities. The body constitutes both "subject" and "object." However, physical body and lived body are experienced as one and the same until the relation between the two is broken.2 5 8 For the person who is sick, disease is experienced as present in the body. The body is not merely a physiological state or a physical object, but an essential part of the self. As the location of experience and subjectivity, the body is a conscious body, indistinguishable from the conscious mind, but also a disordered agent of experience. Changes can be determined in the body as physiological state, but illness is present and experienced in the lived body. Positing disease as internalized and objectively knowable ignores the subjective experience of the 2 5 6 Kroll-Smith and Ladd, 7 & 8. 2 5 7 Disease is defined through physiology; illness is subjective and experiential; sickness is the social response which surrounds disease and illness (Fox, Postmodernism, Sociology and Health, 4). 2 5 8 van Manen,15 & 16; Melucci, The Playing Self; 71-82; Good, 124. 81 individual. 2 5 9 As the "undivided total self," the body is we ourselves, subject. When the body however no longer functions as it used to, when it is racked with chronic pain of unknown cause, and when it experiences symptoms that do not correspond to any known medical diagnosis, the body becomes an object, distinct from the experiencing and acting self. The relationship between the body, self and the surrounding world is altered. A person's ongoing life is disrupted. The body has become a problem, and can no longer be taken for granted. The individual can no longer live in a self-forgetful, passed-over relation to the body and to the world. The body "is no longer the subject of unconscious assumption, but the object of conscious thought." It becomes an encumbrance, confronts, stands before the person as object.260 Pain as well as symptoms of unknown cause and entity deconstruct, dissolve and deobjectify the known lifeworld, unsettling the sense of the known. Individuals experience a disintegrative existence. They can no longer forget their bodies in order to be attentive to the everyday aspects of the world. In response, individuals attempt to reconstitute the world by objectifying the deobjectified, forcing meaning onto symptoms.261 The founder of the SCIDS group discusses her illness as an object separate from herself, embodied, but which must be contained and controlled. Here, she is contrasting her illness to that of another person with SCIDS: So, I mean hers worked into her upper body eventually, mine worked into my lower body eventually [...]...and um, hers is progressive, okay, mine was progressive and now its gone into remission and I mean it's a fight to keep it there, but its worth it, um.... Chronic pain and symptoms of unknown cause have agency, flooding out into the world and shaping not only the experience of self but the experienced world. The sense of being an 'undivided total se l f who authors activities is undermined as the body dominates consciousness. ...severe pain, um, when you have the signals goofing up your central nervous system, then you're going to have totally unexplainable uncontrollable pain, and 9 Good, 116. 0 van Manen, 12; Hyden, 51; Kelly and Field, 248; Good, 116 & 124; Giddens, 35-42. 1 van Manen, 23; Good, 128. what are you supposed to do i f you can't stand on that leg because it 's so painful, you can't just c l imb into bed, its not, you know i f you can't even stand a sheet on it.... Absorbed by pain and uncertainty, the world is under threat of being "unmade."262 Pain resists both localization and the objectification of standard medical testing. Neither visible nor real according to clinical medical practices, the reality of the condition is questioned and the sufferer and their suffering disaffirmed. Pain remains internal, ambiguous and unverifiable to others yet of absolute certainty to the sufferer.263 One of the most fundamental assumptions of everyday life is that we live in, inhabit, experience a world shared by others. This "form of sociality" is called into question by sufferers of chronic pain and illness. Pain and symptoms of unknown cause subvert everyday life goals. Suffering and medicine take precedence, replacing the prior social world. The world shared by others is no longer experienced; others no longer fully understand. Chronic illness changes the very foundation of a person's life: new and qualitatively different life conditions are created by illness. The future is perceived and anticipated from a totally different angle, and the past acquires new meaning as a part of a life lived. 2 6 4 However, whilst the interaction of the body and the world are "unmade" by the vulnerability of the body, it is also "remade" by the institutions of medicine in an effort to find relief and efficacious treatment. Interactions with the medical system play a crucial role in the shaping of experience. For many, not only the health care system but also the bureaucracy of insurance and welfare agencies come to occupy much of their time and activity. The constant disaffirmation encountered in the struggle for legitimacy leaves its effect on both pain and self-worth.2 6 5 2 6 2 Good, 124. 2 6 3 Good, 125. 2 6 4 Hyden ,52; Kelly and Field, 248; Good, 126. 2 6 5 Good, 127. 83 The Politics of Definition Many of the activities of the medical world are directed towards providing meaning. Diagnosis, therapeutic activities as well as narratives of suffering and illness are examples. Naming the symptoms and experiences, and in so doing providing both a symbol and an image around which a narrative can be shaped is a crucial step in remaking the world and authoring an integrated self.266 The founder of the SCIDS group found her world being undone, unsettled. She asks in response to her injury in the supermarket and subsequent progressive dis-use of her arm "..what the hell is going on here...." Lack of control over her body is experienced, contrasted with the ability to control other parts of her life: ..we had some control over our water, by that point I mean, um, I basically lost the use of both arms...the left one from overuse and the right one...cause it didn't heal...and then it started into my legs...and into the rest o f me, um,... Naming the condition provides control, personal and emotional, by way of knowing what is wrong. 2 6 7 It has been suggested by others with associated environmental illness that without a name, a word, that the symptoms may perhaps not even be fully specified. They come in clusters and, grouped together, form a kind o f coherence that can be sensed. The cluster o f symptoms, for instance, that you feel when you are coming down with a flu. A s one sensation is added to another—headache, fever, fatigue—you begin to grasp the nature of your affliction. Though i f you did not know the name for it, you would not be able to diagnose yourself as having the f lu. This is where a doctor's knowledge is crucial. In the realm o f healing, perception is achieved through collaboration. It is a democratic process o f a kind. A doctor may ask you to describe what you feel, for instance, but i f you have learned no words for the symptoms you are experiencing, you may not even have delineated them. 2 6 8 Naming is experienced as an alleviation of anxiety and fear, as reassurance.269 van Manen,12 & 13; Hyden, 51; Good, 128 & 129. Brown, "Naming and Framing," 39. Griffin, 284. van Manen, 12 & 13. 84 It's a relief. I mean i f you get headaches, you don't know why, its scary, my G o d , have I got a brain tumour, you know, have I got an aneurism? Y o u ' v e still got the headaches, but its less stressful. The acronym SCIDS contains within it an idea of what is being experienced, of what is wrong. The illness is chemically induced, it results in dysfunction in the body, and it is a set of symptoms that together form a syndrome. In addition, coined by the group itself, a name was seen as necessary, in part for the understanding that came with it: . .you know, S C I D S , probably was a real stupid move on our part,, but it was one that everybody agreed on, we had to have a name... When asked what happens when you have a name, she replied, "you get recognition." Recognition from a now more knowledgeable other influences what the sick themselves can say. What you are able to say or even know about your own experience depends in some mysterious manner on the attitude o f the listener. Truth comes into being by call and response. The curiosity o f the listener is like a magnet, pull ing testimony from an inarticulate obscurity. A n d as with any tale, when the listener has heard the story, the process o f telling w i l l be healing in itself. 2 7 0 Diagnosis Naming a set of symptoms is part of the social construction of diagnosis. Whereas invoking a name may have meant giving voice to the lifeworld for the SCIDS group members, it also gave voice to medicine. Diagnosis is the semiotic act of transforming a patient's complaints into the signs of disease. One symbol system is translated into another. Diagnosis determines the existence and legitimacy of a condition. It begins the process of the social construction of disease. It legitimizes the suffering as well as the sufferers themselves.271 Illness is a negotiated state. The patient's subjective manifestations of illness, the symptoms, are narratively accounted to the physician. These subjective manifestations are corroborated or confounded in discernible physical signs discovered by the physician upon examination of the patient's body. These objective, readable signs of the body's malfunction 0 Griffin, 285. 1 Brown, "Naming and Framing,"39; Kleinman, The illness narratives, 16, 17 & 129. 85 point toward what may have produced the symptoms and/or what the symptoms mean. Additional diagnostic tests may yield suggestive, sometimes conclusive, results.272 The patient's complaint and symptoms, the clinical signs, and the test results are part of the diagnostic circle in which these pieces are fitted into a whole and tested against a knowledge of their context. Now with a grasp of the whole, the physician reasons back to the details, questions missing pieces of information that may rule out other possibilities, and confirms the strongest, more likely hypothesis. The patient's narrative of subjective symptoms becomes the medical narrative of the physician which is then returned to the patient as a diagnosis. This transformed account of illness must be reinterpreted and reintegrated by the patient to explain her ongoing life story. The diagnosis as legitimization of sickness by a physician may constitute and/or confirm a new identity.273 Labeling in the form of diagnosis is often enough for the provision of health services, welfare and unemployment benefits, workers compensation claims and legal testimony.274 The SCIDS founder notes that the Workers Compensation Board, whilst not prepared to provide compensation, does at least recognize the illness. ...I mean the fact that W C B „ now recognizes it, it won' t do anything, but i t ' l l acknowledge it... However to be provided with compensation, as well as exemption from social responsibility, the diagnosis must be accepted by the medical community, not declared as non-existent. It must be detached from its original location so as to establish its autonomy scientifically. Naming and formulating a diagnosis is not enough. Diagnosis consists of both process and category. The definition of a category occurs through a process or set of interactions. Category is the nosological2 7 5 location in medical knowledge, the often reified definitions of disease, where diagnosis resides. Brown outlines a typology of diagnostic conditions and definitions.276 He points out that Hunter, 9-15. Hunter, 9-15; Kelly and Field, 248. Brown, "Naming anf Framing," 39. Nosology is the classification of disease. Brown, "Naming and Framing," 40. 86 the social construction of diagnosis involves a condition and a biomedical definition. In each of four types (see Figure l ) , 2 7 7 the condition (disease, set of symptoms, or physical state for example) may or may not be accepted as a biomedical entity. As well, the biomedical definition (the presence or absence of a specific identification of the condition by medical science) may or may not be applied. In the vast majority of cases, the conditions (for example, infectious diseases, chronic disease, injuries) are accepted and biomedical definitions applied (cell 1). Sometimes however, conditions may not be accepted but a medicalized definition applied (for example, chronic fatigue syndrome, chronic pain syndrome: cell 2). A medicalized definition may be a form of labeling, and may be applied for a number of reasons, such as expansion of a field on the part of professionals,278 or to legitimate their condition on the part of individuals. In other cases, medical conditions may not yet be accepted, and a medical definition not yet applied, but they may be potential medicalization possibilities such as genetic predisposition to diseases (cell 4). Lastly, some conditions are generally accepted, but no medical definition is widely applied. Environmental illness believed to be caused by a local contamination is an example (cell 3). Neither medical nor government authorities are willing to recognize these conditions as attributable to contamination. These latter definitions are contested.279 In the case of SCIDS not only the medical definition but also the condition was contested. The process of medicalization of a condition may begin with labeling, with the definition of the problem debated extensively. A period of claims making by both medical and non-medical parties to further delineate the problem as medical follows, and eventually, legitimacy and institutionalization of a firmly rooted medical definition. Brown, however, argues that this sequential model applies to medicalized definitions, but offers little towards understanding the process of contested definitions. He suggests that lay people experience conditions that may not be recognized by the medical establishment, and bring these to public attention. Whilst many lay-initiated discoveries of disease are conflict ridden because of contradiction of biomedical Taken from Brown, "Naming and Framing." Gusfield, "Constructing Ownership." Brown, "Naming and Framing," 40-42. 87 knowledge and/or authority, some non-conflictual lay discoveries are also made. These latter are Figure 1. Typology of conditions and definitions Condition gcncrall) accepted Condition not gencralK accepted or is questioned Biomedical definition applied 1 Routinely defined conditions (infectious disease, chronic disease, injuries) 2 Medicalized definitions (late luteal phase dysphoric disorder, chronic fatigue syndrome) Biomedical definition not applied or conflict in making the definition 3 Contested definitions (occupational diseases, environmentally induced diseases) 4 Potentially medicalized definitions (genetic predisposition to disease) not the subject of dispute since both lay people and professionals agree that the medical condition exists. Self-Help Groups Whilst naming and diagnosis are a way of remaking the world for illness sufferers, self-help groups are another. Self-help groups among the chronically il l are a feature of a pluralistic, liberal society in which it is recognized that professional discourses can be augmented by those of sufferers. The goal is to supplement or provide support that is not available within the formal medical institutions.280 The development of groups of like-minded others who share similar world experiences is a feature of the late twentieth century. The SCIDS group was one such Fox, Postmodernism, Sociology and Health, 34 & 35. 88 group: a support group, a self-help group. ...the group was basically there as a help group, a sounding board for other people, it was basically two reasons, the main one in my mind was, a sounding board for people who had all these things that doctor didn't know what it was, to say, to hear how other people were dealing with it, how other people are coping with it, cause I mean it got you through the next day and you, you had to have that...um, and the other was, public awareness Self-help groups consist of people who feel they have a common problem, typically a medical, social or behavioural one, and have joined together to try to do something about it. The need for self-reliance, the ability to retain independence, and reciprocity characterize self-help groups and the individuals in them.281 Self-help groups however do not spring up spontaneously. They do so because someone wants them to come into being and puts a great deal of effort into their cause.282 SCIDS founder....I told [local orthopaedic specialist] if anybody wants to talk, like we've got to help each other and um, that sort of started the flow Interviewer: That was the start of the group thing was it? SCIDS founder. Yeah, yeah, and there was the three of us that got it going um, [local orthopaedic specialist] basically what he did is, um, he said look, anybody else, give them our names so then the phone calls started and um, we met some.. Most self-help groups begin at the local level with no immediate ambitions of moving beyond that, although they may encourage the formation of similar groups in other areas as enquiries and interest are received from outside the area. Launching a group satisfactorily is a challenging activity. The founder is often already burdened by his or her own problems and now has to deal with the problems of a whole new set of people plus those of running the organization. Administrative and public relations skills as well as time and energy are needed.283 ...at one point we had 60 to 70 people coming to meetings...but at the same time I would venture to say that wasn't even ten percent of the phone calls we had..ah, it was unreal, I mean the phone rang continually, and it still does, you 1 Richardson and Goodman, 2-4. 2 Richardson and Goodman, 33. 3 Richardson and Goodman, 34. know, at least once or twice a month there'll be somebody um, um that, they're not getting it from a doctor, they're getting it from newspapers, past articles, things like that, so I mean, its by no means stopped...you know I would venture to say at one point I enlisted 500 people in the valley, I have a list of people who contacted me who were sick, so, and I know it went a lot further than that Life, especially that of immediate family, may be considerably disrupted.284 ...I mean I was right down to a wheelchair, they were going to put me on oxygen and I went okay, I can't do this anymore I've got a family and I finally had to say, okay, um, which is more important, my, doing this for everybody else or focusing on myself and getting myself better..and that's what I finally had to do Self-help groups don't necessarily benefit everyone who is a member. Whilst many people benefit enormously, some people put time and energy into helping with little recognition. In addition, the assistance groups are able to provide is not necessarily immediate or free in terms of time, energy and commitment.285 These were very real problems for the SCIDS group. The SCIDS group founder recognized that what works for one person isn't necessarily going to work for someone else but, you have a lot more, ah, reference..you can call on a lot more information when you're able to talk to somebody else about it Being able to share information with each other was considered a strength of the group. I was able to send other people to that [people who had experienced those symptoms], okay, but because the symptoms are so wide ranged, what's going on with you today, I might have gone through a month from now, or I may not go through till next month, but because I'm in contact with you and I know, or if a new test comes up...we'll sort of call it amongst each other...I mean I had migraines, and I've had migraines for years, I mean I was living, it seemed like for about three years, a total migraine, they brought out a new treatment, I haven't had a migraine in four and a half months...and that came through the group 2 8 4 Ibid. 2 8 5 Richardson and Goodman, 4 . 90 Most self-help groups do not wish to be thought of as lobbyists or as pressuring government agencies and the like. 2 8 6 Nonetheless, they do undertake to get their views known and listened to by the relevant authorities. The SCIDS group certainly distanced itself from any groups it considered radical ..one of the groups that we did have contact us, wanting to get in with us, was GreenPeace. We didn't need radicals, okay, and the minute you talk GreenPeace, people think fanatics but saw themselves as having a "fight" with government ..the daily fight really wore me down, you know fighting with the government continually, um I can remember phoning Elizabeth Cull [Minister of Health], I mean, I used to phone her directly (chuckle) "1 don't want to talk to you" and I used to literally say to the secretaries, I am really mad and you don't want me to take it out on you so just put me through to her, and they would (laugh) and I'd (big growl) I would just chew her up and spit her out and um... For core group members of SCIDS, contact with government, predominantly the Ministries of Health and Environment and at both provincial and local levels, usually as phone calls, was a daily occurrence. In addition, there were constant calls from other SCIDS members as well as the general public requesting information. Monthly meetings also became part of the routine.287 Actively redefining the self Whilst the self-help group took a big part of her life, medical activities also came to dominate. Medical activities refer to those processes in which the sick participate, such as medical tests and rehabilitation therapies. They come to replace normal interactions, increasingly shaping the lives of chronic illness sufferers to the world of clinics, therapies, tests and medications, increasingly alienating them from the social relations and projects that have been critical to their lives. 2 8 8 The SCIDS founder searched for answers to her symptoms from Richardson and Goodman, 46. Interview with SCIDS group founder, June 1998. Good, 124. 91 many different avenues, taking part in research studies, seeing specialists (including a neurologist and a psychologist), having surgery to remedy atrophied muscles, seeking alternative therapies. Halting a progressive decline of her muscles also meant working at it daily: It took a lot to get me where I am today. I always worked out almost daily in the hot tub out back, I've backed of f on it a bit since we've been here cause, I 'm able to stay active in other ways, but it was the only way to keep the muscles from any atrophying more Eventually she had to retire from the SCIDS group itself in order to get herself well. Getting well took time. Narrating the self: Practical Epistemologies Naming, diagnosis, self help groups and the activities associated with recovering health remake the unmade world for the i l l . These become enfolded into narrative. Ontological narratives are the stories we tell to make sense of our lives, to know who we are. This is a precursor for knowing what to do. "Doing" produces further narratives which produces further action. Narrative and ontology are a mutually constitutive process. "Both are conditions of the other; neither are a priori." 2 8 9 It is upon an individual's understanding of themselves in any number of narratives that their actions are based. We understand our lives in narrative form. Further, this understanding and the narrative itself is social and interpersonal. Constructed through social and structural interactions over time, narratives such as naming, diagnosis, those developed in self help groups and in medical activities of recovering health become a tailored and transformed part of our ontological narratives.290 Objective medical knowledge and subjective experience are connected in that people deal with their own and other's illnesses in accordance with the dominant discourse of medical knowledge. That of course is well and good i f the illness is recognized by the dominant medical paradigm. However, objective medical knowledge is unable to recognize environmental illnesses such as SCIDS: "the symbols of medical technology are silent on the issue of EI (environmental Somers and Gibson, 61. Somers and Gibson, 61; Taylor, 51& 52. 92 illness)."291 It is the narratives and stories of individuals with SCIDS that are the primary source of knowledge about this disorder. The integration of illness experience into medical knowledge remains a constant challenge.292 Nonetheless, the technical language of medical discourse is used by SCIDS' sufferers to narrate their experience: a narrative of biography understood in scientific, medical terms. Consider the narrative of the founder of the SCIDS group: I hurt mysel f at work in what appeared to be just a simple movement. I wound up losing full use o f my forearm on my right side. 1 went to see [local orthopaedic surgeon]. He thought it was really strange that simply by reaching into a shopping cart and grabbing a sausage would. . . The doctors were doing tests. M y family doctor couldn't find out why. I started getting really severe migraines. B y August I was seizuring four and five times a week, full grand mal. I wasn't able to walk down two stairs. We [local orthopaedic surgeon and S C I D S founder] started tracing medical backgrounds. Do ing my own, my family doctor said, W e l l [name], when you were expecting [son's name] you got sprayed with Malathion. We went back and looked at that. That probably was what triggered it, because I mean, it brought on my son six and a half weeks early. That was in '85 and my injury was in '89. Some things get stored in your body and don't become active until there's a trauma or stress or something. I was seizuring continually. I had two little ones. We finally said, okay, lets try and get out o f here. We sold our house and brought some property where the environment was a little bit cleaner, where we could have some control over our water. Wi th the family doctor not knowing [what was wrong] I was going to the health unit, getting information and looking at different things, and jeez what could it be, you know. There was an article on T V about Lyme Disease. Hey, 1 l ived in the Laurentians right, 1 mean what the heck. They determined that no, it wasn't L y m e Disease. We looked at chronic fatigue. 1 took part in a study with a specialist on Salt Spring Island. The symptoms we had were almost exactly the same as chronic fatigue syndrome. Y o u have the fatigue, you have the nausea, you have muscle weakness and so on. I went and saw a 1 Kroll-Smith and Floyd, 18; Brown, "Popular Epidemiology,"37. 2 Good, 117. 93 specialist at St. Paul 's, and a neurologist. When 1 was getting ready to leave he said, point blank, I think you 've been sprayed with chemicals. I wound up going back three more times to see him. The very last time he said, there's nothing wrong with you. I think he couldn't come up with anything. He said he couldn't find anything conclusive. She has a clear picture of cause and chronology of her illness. There is a temporal connotation to illness. 2 9 3 Her narrative indicates the beginning of her illness, and a linear progression of symptom emergence. She also has a theory of disease etiology as well as pathophysiology. Malathion was the source of her illness. After having an initial effect (the early delivery of her son), the disease remained dormant for some years, stored in her body awaiting release. She continued searching for information as to what her illness might be, since it remained unnamed for a period of time. She knew from experience that exposure to low levels of chemicals could trigger her to seizure. Muscles were atrophying; her body was progressively becoming immobile. Around these experienced facts, changes were made in her life: a move to a healthier environment, and one over which she felt she might have some control; a daily treatment regime. Her story of illness experience incorporates technical language into the narration. Medical language describing her body changes, her experience of illness provide her with an understanding as well as a means of explaining with authority her symptoms and experience. This is part of her repossession of her story of illness. Having narrated her symptomatic account to the physician, a narrative which was then medicalized to identify and treat a disease, she now reconciles the objective medical account back to her own subjective experience.294 This persuasive claim to the truth, both to herself and to others, is part of what Kroll-Smith and Floyd suggest is a "practical epistemology."295 Expert knowledge is separated from its institutional anchoring and applied to the world of personal and biographical history and experience. This move from one world to another re-shapes expert knowledge. It becomes "a 2 9 3 Hyden, 52 & 53; Melucci, The playing self, 75. 2 9 4 Hunter, 9-15. 2 9 5 Geertz leaves this term vague; Kroll-Smith and Floyd develop a definition for its use in their book Bodies In Protest, 37-40. 94 technical, rational way of knowing that is responsive to the immediate personal and communal needs of non-experts."296 It also renders noisy and audible all that has been silenced by the medical paradigm. Corporeal risk The acronym SCIDS locates risk in the environment. SCIDS is a chemically induced dysfunction. Her search for causes, the Malathion spraying, testing for Lyme disease are among factors that indicate that she too looks to the environment for possible causative risks. However, risk, external to the body, is silenced by the medical paradigm in the SCIDS conflict. The concept of risk in health includes two different notions: environmental risk and lifestyle risk. The latter has been the focus of health promotion and health education. The individual is expected to take responsibility for their own health and manage their own risks through self-governance, self-examination, self-care and self-improvement. Minimizing burden on society by maximizing health is a "project of the self."297 Environmental risk on the other hand includes pollution, toxic chemicals and nuclear waste for example. Environmental risk is externally imposed, with corporations or governments generally thought to be responsible. Further, environmental risk is thought to pose a hazard only to the physical self. Unlike lifestyle risk, environmental risk does not threaten the individual's moral integrity because the risk is not a consequence of something the individual does. Responsibility for their own or other's exposure is not assigned to any individual in environmental risk. They are the "sinned against" whereas those who are deemed to be at risk from lifestyle become "sinners."298 A third form of risk that is largely implicit in medical discourse is embodied or corporeal risk. Here, the risk of disease is located in the body, for example, people with particular corporeal characteristics such as hypertension might be more likely to develop specific diseases. Threat is imposed from within, and implies only limited possibilities for dealing with the hazard, Kroll-Smith and Floyd, 38; Williams and Popay, 122; Hunter, 14. Kavanagh and Broom, 437 & 438. Lupton, 90; Kavanagh and Broom, 438. 95 unlike lifestyle risk where the individual has some possibility of managing their r i sk . 2 9 9 The overlap of these categories of risk can be clearly seen in the narrative of the SCIDS founder. She locates the cause of her disease as environmental, with being sprayed with Malathion the precipitating event. Lifestyle is implicated in that she takes responsibility to move to an area where the environment was considered cleaner. The risk however, previously external, was now internal to her body, awaiting release, triggered by other external elements. Referring to the Malathion incident, she says some things get stored in your body and don't become active until there's a trauma or stress or something which is easily activated, without warning. Friday night, I mean I haven't had a major seizure in over a year. Friday night I was dispatching for Ci t izen 's Patrol, I walked in, the janitor was there and I never gave it a thought. T w o hours later I 'm in full seizure and they're whipping me down to the hospital because I can't breathe. It happens that quick. Whilst some (external) aspects of her life can be managed, the threat from within remains an uncertainty, to be activated at what seems to be the whim of the body. A n effect of this uncertainty related to embodied risk is conceptualization of the self as separate from and threatened by the body. With lifestyle risk the person is defined by what they do or do not do; with environmental risk, the individual is defined by what is done to them. Corporeal risk defines who a person is: an individual both has and is a body. The threat from within in corporeal risk results in an ambivalent body-self relationship.300 In discussing the trajectory of her illness, the SCIDS group founder disassociates herself from her body. Her body is discussed as some 'thing', other, that is being invaded. The invasion however is caused by external pollution. The integrity of the person is not impugned. The name of the disease, Somatic Chemically Induced Dysfunction Syndrome (SCIDS), contains within it causation that places responsibility outside the person. At the same time however, managing the uncertainty of Kavanagh and Broom, 438. Kavanagh and Broom, 440. 96 corporeal risk requires surveillance of the body and taking the appropriate action. I 've got the clubbed feet again, my hands are clawed...and its day after day o f just stretching muscles again to get them responding. Diagnostics: The inscribed body/the becoming self Surveillance of the body is part of the inscription of the self as "patient." The medical gaze is applied to the body by the body's self. This is part of a process in which the power of the physician, which is wielded through the gaze, is de-individualized and taken over by the observed themselves as they create a subjectivity of patient.301 Surveillance of the self has become part of the life of the founder of the SCIDS group. She applied the gaze of the physician to herself. Not only does she talk about the physical effort required to keep herself functioning, but also the gaze, hers, that surveys her body daily and requires her to work at keeping herself functioning. Both she and her condition become the object of surveillance. She is inscribed as a patient. Stating "I am i l l , " her knowledgeability of disease inscribes her as a SCIDS sufferer. The SCIDS self-help group also extended surveillance. The bodies of the SCIDS members are inscribed through their practices as part of the group, and their interaction with the knowledgeability which the group constitutes in its themes of science and self-help. Not only in the self-help group do we see the physical bodies of those with SCIDS but also their embodiment within a subjectivity of what it is to be a sufferer of SCIDS. Taking on the objective language of medicine to understand their own subjective experiences, SCIDS members/sufferers disciplined both physical body and self.302 Taking over the surveillance of medical authority, the relations of observer-observed that constitute the gaze begin, in this case, with the diagnosis. The gaze allows the composition of knowledgeability about disease through observable signs and symptoms. In the patient-physician relationship, the gaze provides knowledge and expertise to the physician as the patient relates symptoms that are translated into the signs of disease. What is important is not what the 3 0 1 F o x , Postmodernism, Sociology and Health, 2 8 3 0 2 F o x , Postmodernism, Sociology and Health, 3 4 & 3 5 . 97 patient thinks, but what the patient says. The body can be "read" only by the expert, the physician.3 0 3 However, as we have seen, the knowledgeability of the expert is taken over by those with environmental illness. The body in turn is 'read' by the sufferers themselves, inscribing both visually and in practice, contributing to the self, to subjectivity. Discourse forms, defines and reproduces subjects at the same time as it seeks to control, regulate, limit or prohibit those subjects.304 A discursive field is created, a diagnostic, depriving the person of continuities, dissolving the comfort of temporal identity, establishing difference. She is in the process of becoming something other, what she does not yet know. 3 0 5 She uses technical language for her symptoms (seizure, migraines, grand mal, atrophying muscles), she has knowledge of other, similar illnesses and their clusters of symptoms (multiple sclerosis, chronic fatigue, fibromyalgia), can talk knowledgeably and technically about pesticides, safe levels and synergistic effects, and about alternative treatments. These medical and technical discourses inscribe the body. There is no inner identity; only the subjectivity of the person so inscribed. The body becomes a text, a system of decipherable, read and read-into signs. Her body, coded with and as signs, speaks without necessarily talking. 3 0 6 She is the grand mal seizure, the migraine, the atrophying muscles. She is SCIDS. Inscribing the body is not hers alone to do however. Public and expert narratives also comprise inscriptive practices. Media play a key role in the framing of narrative and are the subject of the next chapter. I return to where the research began and trace a private trouble that becomes a public issue, and how it is played out in the public and expert narratives. Fox, Postmodernism, Sociology and Health, 25-31. Butler, viii, 2 & 140. Rajchman, 47-49. Grosz, 35. 98 C H A P T E R FIVE: PUBLICIZING T H E F R A M E OR F R A M I N G T H E PUBLIC? T H E M E D I A S T O R Y It began as an individualized problem. Symptoms seemingly did not fit any specific diagnosis. People were sick, but individually so. However, the numbers of individually sick increased. A doctor noticed a pattern. A group was established, the media informed. The "personal troubles of milieu" became the "public issues of social structure."307 From Private Troubles to Public Issue C. Wright M i l l s 3 0 8 points out that troubles begin with the self, with the character of the individual, and within the immediate relationships and environment within which that individual lives his or her everyday life. Similarly, Strauss wrote that individuals must be understood "embedded in historical context" and "a temporal matrix."3 0 9 Biographical processes refer to the responses of the individual throughout the life course. Strauss uses the example of chronic illness as a significant event that resonates in the individual's life as he or she contextualises it, comes to terms with it, reconstitutes his or her identity vis a vis it and recasts their biography in a new direction despite the illness. When many people encounter the same events, share the same experiences and talk about them together then these same biographical processes are collective rather than individual. They are in other words, private troubles become public issues. Historical and structural conditions, and biographical processes together constitute identity for Strauss, and are the conjuncture within which private troubles and public issues are to be found for C. Wright Mills. A trouble is private, and is lived out within the biography of the person. It concerns values the individual holds dear. However, when a number of people share the same troubled milieu, albeit unknown to each other, that private trouble becomes a public issue located within social structures and historical life. As C. Wright Mills explains, we all live our biographies within an 3 0 7 C. Wright Mills, 5. 3 0 8 Ibid. 3 0 9 Strauss, Mirrors and Masks, 164; idem, "Identity, biography, history," 4. 99 historical period and the constraints of a social structure. The following narrative from newspaper articles transforms the private troubles of individuals with symptoms that they believe constitute an environmental illness to the level of public issues. As public issues, contestation over naming, defining and owning the social problem ensue. The Media Narrative From the mid-1980s, the Abbotsford orthopaedic specialist noticed mainly adolescent girls, 13 to 15 years of age, and women in the 20 to 40 year age group presenting with a number of common characteristics which defied any given medical diagnosis. Most common presenting symptoms were anterior knee pain and recurrent ankle sprain. In addition, individuals are found to exhibit any or all of the following: prominent lumbar lordosis; pain on palpitation of one or more lumbo-vertebral segments; restriction of posterior rotation of the pelvis to one or both sides; trophedema of the lower back; increasing sensitivity to pinprick and pinching when progressing from the lower thoracic to lumbar region of the back; increased sensitivity to pinprick below the knee bilaterally in a distribution not following sensory dermatomes; inability to squat without lifting heels; and difficulty balancing on one foot. As well, some women in their 30's exhibit night blindness and loss of peripheral vision fields. Employing a specific muscle exam, the specialist found all cases commonly exhibit a pattern of muscle weakness of which the individuals are generally unaware. The specialist noted that other doctors in the region were seeing the same symptoms. The majority of individuals were referred to the specialist's clinic by other physicians who were unable to provide a diagnosis or relieve symptoms.310 In 1989, the specialist informed the Central Fraser Valley medical officer of health of his concerns about the recurring illness. Two years later, with five of his patients, the specialist shared the story with the Abbotsford Alderman, a Dewdney Allouette Regional District representative, the Upper Fraser Valley medical officer of health, and some community members Trudy Beyak, "Enviro-disease" Abbotsford News, August 21,1991. 100 establishing an environmental group.3" By this time, the SCIDS group had been founded. A local toxicologist and scientist who attended a meeting of the group stated his concern that SCIDS sufferers may be showing symptoms of chronic toxic poisoning. The Central Fraser Valley Union Board of Health medical health officer confirmed that no funds had been allocated for research to investigate what might be causing the symptoms.312 This perceived failure on the part of politicians and government officials to take seriously the specialist's and his patients' concerns led the group, and in particular its spokesperson and founder, to become more vocal and active.313 Unable to secure funding from the Ministry of Health to research the syndrome, in mid-1991, the Abbotsford orthopaedic specialist completed his own study. Together with two Vancouver independent medical examiners he conducted a five month single blind study of eighteen adolescent patients suffering unexplainable knee pain. His report indicated a strong significant correlation among the severe cases. The research data and findings were passed on to a U B C epidemiologist who recommended that another study take place to thoroughly investigate the syndrome.314 A link between the environment and the SCIDS member's symptoms was made by the orthopaedic specialist, and conveyed to the SCIDS group at one of their meetings towards the end of 1991. He pointed to the deluge of pesticides and herbicides in the environment, encouraged by a multi-billion dollar chemical industry and increasing industrial farming in the region, as a causal factor in both the disappearance of frogs, snakes and birds in the region, and the serious health effects experienced by the members of the group. Drawing a parallel with the AIDS movement, he encouraged the group to become politicized in order to gain recognition, as well as research funding, for their illness.3 1 5 3 1 1 Trudy Beyak, "Victim told to cool it: On speaking out about possible enviro-disease cause "Abbotsford News, October 23, 1991. 3 1 2 Trudy Beyak, "Toxin disease victims form group," Abbotsford/Matsqui & Mission News, August 31, 1991, sec. A. p.2. 3 1 3 Ellen Saenger, "Searching for answers," British Columbia Report, November 11, 1991. 3 1 4 Trudy Beyak, "Disease theory supported "Abbotsford News, November 16, 1991; Trudy Beyak, "Research needed to solve muscle weakness mystery," Abbotsford News, August 21, 1991. 3 1 5 Trudy Beyak, "Victims of chemicals," Abbotsford News, October 30, 1991. 101 Since at least the early 1980s, groundwater contamination in Abbotsford had been a concern. The Environment Committee of the Association of Professional Engineers and Geoscientists of British Columbia were aware of the potential for high nitrate and pesticide contaminations in the Lower Fraser Valley groundwater since 1981, and had sent several warnings to government.316 Briefs in 1981 and 1985 were submitted to the then British Columbia Ministers of the Environment, outlining the problems associated with the ongoing agricultural practices of local farmers and groundwater contamination.317 Very few of the briefs recommendations were implemented.318 From 1984, Environment Canada, the National Research Institute, and Agriculture Canada had been testing for and finding pesticides in the Abbotsford aquifer. The pesticides Dinoseb, Simazine, Alachlor, Atrazine, Dimethoate, Chlordane, Endosulfan and DDT had been found in the groundwater in lower than maximum acceptable concentrations for the years 1984 to |990 319,320 3 1 6 Trudy Beyak, "Public health tests slow?" The News, October 23, 1991, sec A . p . l ; Ellen Saenger, "Searching for answers," British Columbia Report, November 11, 1991, 30; Trudy Beyak, "Groundwater Hot Spots," AbbotsforaVMatsqui News, June 24, 1992, sec. A . p.8. 3 1 7 Bob Willett, "B.C. water checked for contamination," The Western Producer, January 23, 1992, 40. 3 1 8Ellen Saenger, "Searching for answers," British Columbia Report, November 11, 1991, 30. 3 1 9 Trudy Beyak, "No tests for cheaper pesticide," Abbotsford/Matsqui News, September 2, 1992, sec. A. p.3. 3 2 0 Dinoseb is a herbicide and dessicant used in the control of broadleaf weeds and for pre-emergence control of annual weeds in crop cultivation as well as control of runners in strawberries and raspberries. Dinoseb is classified as very toxic to humans with a variety of symptoms which include personality change. The chemical's carcinogenic potential has not been adequately investigated, it has potential as a cataract-inducing agent, and has teratogenic (causing malformation of a foetus or embryo) and foetotoxic effects. Simazine is a soil sterilant and a herbicide used to control broadleaf and grassy weeds in the cultivation of a variety of crops and as an aquatic weed control. Simazine is considered to be only slightly toxic to humans. Atrazine is used for weed control in crops and has persistence in soil in temperate climates. See n.198. Dimethoate is an organophosphorous insecticide and acaricide used to control houseflies, insects and mites on fruit, vegetable, field and forestry crops. It is subject to considerable leaching through the soil. It is a cholinesterase inhibitor. There is inadequate evidence available to classify dimethoate as a carcinogen, mutagen or teratogen.(Guidelines for Canadian Drinking Water Quality-Supporting Documents. Health Canada. July 03, 2001). Alachlor is a herbicide used to control annual grasses and broadleaf weeds in field crops such as com. It is classified as slightly toxic and the chemical's carcinogenic effects are uncertain given the inadequacy studies to date <http://www.ace.ace.orst.edu/info/extoxnet/pips/alachlor.htm> Chlordane is an insecticide used to control termites and other wood-destroying insects in the cultivation of crops such as com. It was 102 In 1986, a railway derailment east of Fort Langley resulted in a spill of an estimated 250,000 litres of ethylene dichloride (EDC),later revised to 336,000 litres, some of which reached the lower aquifer.321 Ethylene dichloride is an insecticidal fumigant, used in liquid form on stored crops and soil. It has been demonstrated as a carcinogenic in rats and mice, and is thought to be linked to potentially serious health effects involving the nervous, respiratory, hepatic, renal and cardiovascular systems.322 In 1992, the EDC contaminated groundwater was still being pumped from the aquifer.323 An Environment Canada hydrogeologist, speaking to the B.C. Institute of Agrologists in 1990, stated that sixty percent of the wells sampled near the Abbotsford airport by Environment Canada in the past year exceeded the safe standard for nitrates in drinking water. The standard for nitrates in drinking water is lOmg/L. Another twenty percent were at levels more than twice the safe standard for nitrates. High levels of nitrate contamination can cause methemoglobinanaemia (blue baby syndrome) in which nitrates prevent the exchange of oxygen and carbon dioxide in the lung in infants under six months, creating a build-up of carbon dioxide, banned from all use in the US in 1988. It persists in the soil for up to 20 years, and does not dissolve easily in water. It is classified as highly toxic. There is uncertainty as to its carcinogenic effects in humans ("Chlordane Chemical Fact Sheet 12/86." Cornell University website <http://pmep.cce.comell.edu/profiles/insect-mite/cadusafos-cyromazine/chlordane/insect-prof-chlordane. html>; "Chlordane." Agency for Toxic Substances and Disease Registry FAQ <http://www.atsdr.cdc.gov/tfacts31 .html>) Endosulfan is an insecticide and acaricide for the control of insects and mites on fruit, vegetable and grain crops. It is classified as a highly toxic pesticide, and may cause reproductive and mutagenic effects in humans ("Endosulfan." Extension Toxicology Network, Pesticide Information Profiles, Oregon University. 1996. <http://ace.orst.edu/info/extoxnet/pips/endosulf.htm>). DDT is an insecticide, banned in the US in 1973. It is classified as a probable carcinogen ("DDT." Public Health Statement, Agency for Toxic Substances and Disease Registry, Division of Toxicology, Atlanta, Georgia <http://www.atsdr.cdc.gov/ToxProfiles/phs8908.html>). 3 2 1 Larry McCallum, "Abbotsford water contaminated, scientist claims," The Vancouver Sun, May 4, 1990, sec.B. p.l ; Glenn Bohn, "Recovering the Blob," The Vancouver Sun, August 15, 1986, sec. B. p.l & 3. Ethylene dichloride is a manufactured chemical not found naturally in the environment. It is commonly used to produce vinyl chloride, and to dissolve grease, glue and dirt. While it evaporates very quickly, it can stay for years in groundwater. EDC causes damage to the heart, central nervous system, liver, kidneys, and lungs, <http://www.baggettmccall.com.edc.html> 3 2 2 "EPA Health Effects Notebook for Hazardous Air Pollutants-Draft." EPA-452/D-95-00, PB95-503579. December 1994. 3 2 3 Trudy Beyak and Natasha Jones, "Disappearing Act. What happened?" Abbotsford/Matsqui & Mission News, Saturday June 20, 1992, sec. A. p.7. 103 turning the infant blue. High nitrate levels may also be implicated in higher cancer rates in the general population. Manure stockpiling, excessive fertilizing, septic tanks, and the poultry and raspberry industries were identified by the Environment Canada hydrogeologist as the primary problem and source of nitrate contamination. A B.C. agriculture ministry agrologist stated that a voluntary code of good practice for farmers, rather than stringent legislation governing manure application would be put in place. He noted that action that would jeopardize the economically important poultry, swine and raspberry industries should not be implemented.324 The District of Abbotsford assured the public that the municipal drinking water was safe and that the contaminated water was to be found in private wells along a strip of land near the Canadian-US border where nitrates were leaching into the aquifer.325 Nitrates and pesticides continued to plague the aquifer of the Lower Fraser throughout the 1990s. Late in 1991, the orthopaedic surgeon stated that he had sixty to seventy patients with the mysterious enviro-disease, and that the provincial government was "scrambling to check his claims." A spokesperson for the health ministry said that the following steps were being taken in light of the orthopaedic surgeon's reports: the ministries of health, environment and agriculture had established a committee of assistant deputy ministers; the health ministry was negotiating a contract with specialists at the University of British Columbia to get a second opinion on the diagnosed patients; and the health ministry was seeking proposals from an engineering or consulting firm for an overall picture of the Upper Fraser Valley groundwater system. The orthopaedic surgeon said that he too was attempting to validate the disease, to make sure it was not "pie-in-the-sky." He stated that he suspected pesticides as the cause because the symptoms involved the central nervous system and the immune system, and he maintained only a chemical would be likely to do that.326 A problem noted by a U B C epidemiologist was that the orthopaedic surgeon was the only 3 2 4 Larry McCallum, "Abbotsford water contaminated, scientist claims," The Vancouver Sun, May 04, 1990, sec. B. p.l ; Trudy Beyak, "Key report is double trouble," Abbotsford/Matsqui News, June 24, 1992, sec. A. p.8. 3 2 5 "Water okay, Abbotsford says," The Vancouver Sun, May 05, 1990, sec. A. p.5. 3 2 6 Glenn Bohn, "Government checks claims of mystery ailment in valley," The Vancouver Sun, November 28, 1991, sec. B. p. 16. 104 person observing the condition. He pointed to the fact that illnesses are not usually located at only one geographical point. The orthopaedic surgeon stated that there were others around the world seeing a similar illness. The spokesperson for the SCIDS group pointed out that family doctors were referring patients to the orthopaedic surgeon.327 Concern was expressed in Ottawa about the illness, and the federal government pledged to investigate. It was reported that the federal government, together with local and provincial health officials had been investigating the reports of SCIDS since the early 1990s, and so far had concluded there was no increase in muscle weakness in the Fraser Valley. 3 2 8 October 1991, a consulting hydrogeologist was reported as stating that although the Abbotsford aquifer water was clear, it was not pure. Unacceptably high concentrations of DCP (1,2 and 1, 3 dichloropropanes), toxic compounds commonly used in the area,329 contaminated the aquifer.330 A month later, it was reported that an Environment Canada study found traces of 1,2 dichloropropane, a pesticide, in groundwater testing in the Abbotsford area. 1,2 dichloropropane was registered for use in Canada from 1947 to 1985, and could be applied legally until 1990. It was discontinued from use because it is extremely leachable and lasts a long time in the environment. 1,3 dichloropropane is the second most used pesticide in the Fraser valley by raspberry farmers as a fumigant and is injected into the soil to kil l nematodes. Both 1,2 and 1,3 dichloropropane are defined as "probable" carcinogens.331 There was a call for 3 2 7 Glenn Bohn, "Government checks claims of mystery ailment in valley," The Vancouver Sun, November 28, 1991, sec. B. p.l6;Petra Kossman, "Envirodisease study starts from square 1," Abbotsford Times, December 21, 1991. 3 2 8 Glenn Bohn, "Federal government pledges to probe mystery muscle illness plaguing valley," The Vancouver Sun, November 26, 1991; Petra Kossman, "Ottawa told of enviro-disease," Abbotsford Times, November 27, 1991, p.8. 3 2 9 1,2 dichloropropane was used as a soil fumigant (and could be found in some paint strippers, varnishes and furniture finish removers). The breakdown of the chemical in the groundwater is slow, with a half-life of between 6 months to 2 years. Health effects from long-term exposure are unknown ("Toxicological Profile for 1,2-Dichloropropane," Agency for Toxic Substances and Disease Registry, United states Public Health Service. December 1989.). 1,3-Dichloropropane is a soil fumigant. It is of low acute toxicity. No short-term, long-term, reproductive, or developmental toxicity data pertinent to exposure via drinking-water could be located in the literature. The available data were considered insufficient to permit recommendation of a guideline value {Guidelines for Drinking Water Quality, 82.). 3 3 0 Trudy Beyak, "Pesticides are in groundwater," The News, October 23, 1991, sec. A. p.l . 3 3 1 Trudy Beyak, "Debate about cancer," Abbotsford/Matsqui News, June 24, 1992, sec. A. p.8. 105 provincial legislation to protect groundwater by the director of the B.C. Public Health Association. It was noted that the British Columbia Royal Commission on Health Care and Costs had drawn attention to the lack of legislation to ensure high quality drinking water. In addition, the same report noted no single ministry was given overall responsibility for the state of groundwater. The spokesperson for the raspberry industry offered to immediately stop using the chemical i f requested by environmental and health agencies. The medical toxicologist with the B.C. health ministry stated however that there was no evidence of a link between pesticides and the public health problems in the Valley. 3 3 2 A consultant hydrogeologist also stated that, despite the increasing numbers of patients with the symptoms thought to be linked to the environment, there is no concrete evidence that water contamination is the cause. He did however point out that groundwater was deteriorating in agricultural areas such as the Fraser Valley, and that i f not dealt with soon, extensive areas would be left without a safe drinking water supply.3 3 3 The regional hydrologist with the federal environment department had been instructed not to discuss the findings of his study, stating that it had been classified as a sensitive document by Jean Charest, the environment minister, and that the results and the risk assessment would be made public early in the new year.334 The environmental toxicologist in the provincial health ministry stated that for the two chemicals tested, 1,2 dichloropropene and 1,2 dichloropropane, no traces were found of the former, and the test results for the latter were at 1984 levels and did not indicate any health threat.335 Concerned with the media reports on pesticides in the water, and the lack of information from Environment Canada, the Abbotsford district advanced its 1991 annual water testing. The district's water supply was declared safe, with wells east of those pinpointed by Environment Canada as being contaminated, in the clear. Those wells sampled near the airport however did contain traces of DCPs, and it was not clear, because of a lack of information on water flow in 3 3 2 Glenn Bohn, "Health risk of pesticides in Abbotsford reservoirs unclear," The Vancouver Sun, November 14, 1991. 3 3 3 Ellen Saengers, "Searching for answers," British Columbia Report, November 11, 1991. 3 3 4 Glenn Bohn, "Health risk of pesticides in Abbotsford reservoirs unclear," The Vancouver Sun, November 14, 1991. 3 3 5 Glenn Bohn, "Government checks claims of mystery ailment in valley," The Vancouver Sun, November 28, 1991, sec. B. p. 16. 106 the aquifer, whether the water there might contaminate the municipal wells. 3 3 6 In the meantime, the SCIDS group spokesperson had been warned by the Upper Fraser Valley medical officer of health to "cool her contacts with the media," to "quit pointing fingers," and that she wasn't "making any friends in government circles by telling the public about her unidentifiable illness." He maintained his concern was the possible contamination of future research from such publicity. In addition, the environmental link was reportedly problematic to government, environmental, and agricultural agencies.337 Water samples from the groundwater supply of a number of SCIDS members were taken towards the end of 1991. Up until this time little action had been taken by the public health authorities other than advising the Abbotsford specialist on how to proceed with his own research on the syndrome. However, the Upper Fraser Valley medical officer was reluctant to make publicly available the results of pesticides tests taken the year before in Norrish Creek, the Abbotsford and Clearbrook public water supply, claiming that the Health Ministry's interpretation of the data should be sufficient. He maintained that there was no indication of contamination in the public water supply, but groundwater could be a different problem, he said. He had been meeting with federal and provincial officials since May 1991 about the contamination of the Abbotsford aquifer by nitrates and pesticides. Results of the groundwater tests of the SCIDS members were never made public. 3 3 8 In December 1991, it was reported that a U.S. Geological survey was finding similar data to those being found by Environment Canada in the Abbotsford-Sumas aquifer.339 1,2 dichloropropane and 1,3 dichloropropene were found in the groundwater in levels exceeding the U.S. Environmental Protection Agency standards. The U.S. Geological survey had also found ethelene dibromide (EDB) in the aquifer north west of Lynden. This soil fumigant was used frequently by U.S. raspberry farmers and is now banned because of its health effects.340 3 3 6 Vic Bias, "Water passes the tests," Abbotsford Times, November 27, 1991, p.3. 3 3 7 Trudy Beyak, "Victim told to cool it: On speaking out about possible enviro-disease cause," Abbotsford News, October 23, 1991. 3 3 8 Trudy Beyak, "Public health tests slow," Abbotsford News, October 23, 1991. 3 3 9 The aquifer is called the Abbotsford aquifer in Canada, and the Sumas aquifer when it crosses the border into the United States. 3 4 0 Trudy Beyak, "Banned U.S. toxin found in aquifer," Abbotsford News, December 26, 1991. 107 With the encouragement of the orthopaedic specialist, and in the face of the perceived inertia by government, the SCIDS group decided to fund-raise to hire an American toxicologist, whom it was hoped could identify the toxins hypothesized to be causing the syndrome.341 The U.S. toxicologist is reported in the newspaper as being "a former University of Florida professor and former research and development manager with a chemical company in the U.S. mid-west and the south."342 He had worked in environmental toxicology for approximately twenty-five years, and testified in many lawsuits against chemical manufacturers in the U.S . 3 4 3 He had worked with the Environment Protection Agency, U.S. Drug and Alcohol, and the U.S. State Department worldwide, and with thirty American chemical companies and public action 3 4 4 groups. Coincidentally, the provincial Ministry of Health contracted a U B C epidemiologist to study the cluster of symptoms hypothesized to constitute SCIDS. He is described by the Upper Fraser Valley medical officer of health as "knowledgeable, capable and a straight-shooter."345 The $30,000 study was expected to take until the end of April 1992. The contracted U B C epidemiologist stated that speed was of the essence for the study, since people labeled as i l l will become i l l . 3 4 6 Both research projects were conducted over very nearly the same time periods. As part of the epidemiology study, a community advisory committee was established, chaired by the Abbotsford Alderman and Chairman of the Upper Fraser Valley Board of Health, and which 3 4 1 Trudy Beyak, "Victim told to cool it: On speaking out about possible enviro-disease cause," Abbotsford/Matsqui News, October 23, 1991, sec. A . p.2; Trudy Beyak, "Victims of chemicals," Abbotsford News, October 30, 1991; Trudy Beyak, "Disease probe begins," Abbotsford/Matsqui/Mission News, November 23, 1991, sec. A . p.3. 3 4 2 Glenn Bohn, "Consultant claims banned pesticide used," The Vancouver Sun, February 13, 1992, sec. D. p.20. 3 4 3 Petra Kossman, "Toxicologist tests air, soil," Abbotsford Times, February 12, 1992. 3 4 4 Trudy Beyak, "Lipsey's remarks rankle scientists," Abbotsford/Matsqui/Mission News, February 15, 1992. 3 4 5 Trudy Beyak, "Disease probe begins," Abbotsford/Matsqui & Mission News, November 23, 1991; Petra Kossman, "Envirodisease study starts from square {"Abbotsford Times, December 21, 1991. 3 4 6 Rebecca Wigod, "Mystery illness to be probed by UBC doctors,"777e Vancouver Sun, December 19, 1991, sec. A . p.3. 108 included the founder and spokesperson of the SCIDS group.347 There were efforts made by various community players to keep the two studies, toxicology and epidemiology, very separate. The Upper Fraser Valley medical officer of health and the chair of the epidemiological study community advisory committee pointed out that the link between SCIDS and environmental toxins such as pesticides was mere assumption at this stage;348 that the United States toxicologist's investigation had nothing to do with the epidemiological study; and that people had made the link between the environment and the illness before it was determined whether the syndrome called SCIDS even existed. She implored the media to keep an open mind on the topic. An effort was made to replace the term SCIDS with the Fraser Valley Symptom Complex, removing the link with chemicals from the name.349 The toxicologist was the first to report back to the community. Following the testing of soil, water and air samples which included inspecting poultry, hog and other farms, as well as wells and ditches in the Abbotsford area over a five day period in early 1992, he concluded that local farming practices, including the "sloppy" use of pesticides, were impacting the quality of life in the Fraser Valley. 3 5 0 Tearfully, he told Valley residents that they had been poisoned.351 He singled out raspberry farmers, and the use of Captan as "the most misused and overused pesticide" in the Valley. 3 5 2 He also claimed that farmers were using a pesticide banned in Canada since 1986: ethylene dibromide (EDB). 3 5 3 In addition, high nitrate levels, traces of 1,2 3 4 7 Trudy Beyak, "Disease probe begins," Abbotsford/Matsqui/Mission News, November 23, 1991; Petra Kossman, "Envirodisease study starts from square {"Abbotsford Times, December 21, 1991. 3 4 8 Trudy Beyak, "Disease probe begins," Abbotsford/Matsqui/Mission News, November 23, 1991, sec. A. p.3. -3 4 9 Rebecca Wigod, "Mystery illness to be probed by UBC doctors," The Vancouver Sun, December 19, 1991, sec. A. p.3; Petra Kossman, "Envirodisease study starts from square I" Abbotsford Times, December 21, 1991; Petra Kossman, "Toxicologist tests air, soil," Abbotsford Times, February 12, 1992,3. 3 5 0 Trudy Beyak, "Quality of life threatened," A bbotsford News, February 12, 1992, sec. A. p. l ; Glenn Bohn and Al Sheehan, "Consultant claims banned pesticide used," The Vancouver Sun, February 13, 1992. 3 5 1 Trudy Beyak, "Lipsey's remarks rankle scientists," Abbotsford/Matsqui & Mission News, February 15, 1992, sec. A. p.6; Petra Kossman, "We're poisoning ourselves," Abbotsford Times, February 15, 1992, 3. 3 5 2 Trudy Beyak, "Quality of life threatened," Abbotsford News, February 12, 1992, sec. A. p . l . 3 5 3 Glenn Bohn and Al Sheehan, "Consultant claims banned pesticide used," The Vancouver Sun, February 13, 1992. 109 dichloropropane (DCPs), and five and a half times the United States safe drinking water standard of DCPs per litre, were found in some domestic wells. 3 5 4 The provincial Ministry of Health toxicologist agreed with the toxicology report findings in relation to nitrates and traces of DCPs, however he strongly disagreed with the other findings, stating they were not supported by evidence.355 Accusing the Florida toxicologist of causing unwarranted fears in the community, which in itself, it was claimed, might cause illness, the SCIDS group's choice of an American rather than a local or regional toxicologist was questioned.356 The Raspberry Growers Association joined the fray, claiming that their members were well versed in pesticide use. The B.C. Ministry of Environment's pesticide division called for proof of the toxicology study's findings;357 the epidemiologist in charge of that investigation accused the toxicologist of misinforming the community;358 the B.C. Ministry of Health was reportedly checking the American's credentials;359 and the regional hydrologist who had also been testing the aquifer samples was silenced.360 Even more efforts were made by politicians and bureaucrats to distance the toxicology investigation from the epidemiology study. The SCIDS spokesperson agreed that the two studies had nothing to do with each other: the epidemiologists were investigating whether the syndrome existed; the toxicology study investigated the cause and possible treatment of SCIDS. 3 6 1 The epidemiological report followed on the heels of the toxicology report. Using a diagnostic test devised by the Abbotsford orthopaedic specialist to classify individuals with and 3 5 4 Trudy Beyak, "Lipsey's remarks rankle scientists," Abbotsford/Matsqui & Mission News, February 15, 1992, sec. A. p.6; Petra Kossman, "We're poisoning ourselves," Abbotsford Times, February 15, 1992,3. 3 5 5 Trudy Beyak, "Lipsey's remarks rankle scientists," Abbotsford/Matsqui & Mission News, February 15, 1992, sec. A. p.6. 3 5 6 Glenn Bohn, "Valley pesticide poisoning bogus, says expert," The Vancouver Sun, February 14, 1992. 3 5 7 Glenn Bohn and Al Sheehan, "Consultant claims banned pesticide used," The Vancouver Sun, February 13, 1992. 3 5 8 Petra Kossman, "We're poisoning ourselves," Abbotsford Times, February 15, 1992, 3. 3 5 9 Glenn Bohn and Al Sheehan, "Consultant claims banned pesticide used," The Vancouver Sun, February 13, 1992. 3 6 0 Trudy Beyak, "Lipsey's remarks rankle scientists," Abbotsford/Matsqui & Mission News, February 15, 1992, sec. A. p.6. 3 6 1 Petra Kossman, "Toxicologist tests air, soil," Abbotsford Times, February 12, 1992, 3. 110 without the syndrome, the study concluded that SCIDS did not exist.362 The test chosen as an indicator of the syndrome, that used by the orthopaedic surgeon to diagnose the syndrome in his patients, was not reliable, unable to distinguish SCIDS patients from the rest of the population. The test required patients to rotate their wrist whilst a counter-force was applied. Often a sudden weakness was displayed and their wrists turned quickly. This test was reportedly the common denominator in those presenting with the symptoms that became known as SCIDS. The double blind epidemiology study of seventy-nine people consisting of those already diagnosed, those with similar symptoms to the diagnosed, and another group with no problems, found the characteristic weakness in 75 percent of all tested. Acknowledging that members of the SCIDS group were suffering a variety of different symptoms, those symptoms, the report concluded, did not constitute a syndrome.363 Later in the week, a newspaper article reported that the findings of one of the medical examiners was downplayed during the press conference. The report of one of the medical examiners stated that the muscle weakness was the common factor among the five worst cases, noted as an unusual finding for which he had no explanation. His recommendation that another physiotherapist examine the patients was not accepted by the U B C epidemiologists.364 B.C. Minister of Health, Elizabeth Cull, announced that there was no evidence of pesticide-induced illness in the Fraser Valley, and that there would have to be further investigation of the reported neuro-muscular symptoms.365 The founder of the SCIDS group, who had been a member of the epidemiology study community advisory committee, said that she was satisfied the study purpose had been accomplished, and was pleased that although not recognized as a syndrome, it had been acknowledged that she and others were sick and that the assistance 3 6 2 Petra Kossman, "SCIDS-what SCIDS?" Abbotsford-Clearbrook Times, Saturday, February 22,1992,1. 3 6 3 "Illness probe hits the SCIDS," The Province, February 20, 1992, sec. A. p.6; Glenn Bohn, "Valley mystery sickness debunked," The Vancouver Sun, February 20, 1992, sec. B. p.l ; Trudy Beyak, "'Syndrome' is still a mystery "Abbotsford/Matsqui & Mission News, Saturday, February 22, 1992, sec. A. p.2. 3 6 4 "Epidemiologists didn't examine patients," Abbotsford/Matsqui News, February 26, 1992, sec. A. 9. 3 6 5 Glenn Bohn, "Cull cautious over valley health risk," The Vancouver Sun, February 21, 1992, sec. B. p.3. I l l they needed would be forthcoming.366 Later, when that assistance was not forthcoming, she criticized the study for its lack of depth, and for its culmination before its contracted date. Originally to be a three or four month study (January to April 1992), it was completed in six weeks (January to mid-February 1992).367 A complaint against the Abbotsford orthopaedic specialist was laid with the B.C. College of Physicians and Surgeons by an agrologist with the provincial Ministry of Agriculture. Also the chairman of the ethics and practices committee of the B.C. Institute of Agrologists, he stated he was concerned that links made between health and the environment would effect the agriculture industry in the Valley, and questioned the professional ethics involved in making such a causal link. 3 6 8 In his defense, the specialist maintained that he had never singled out pesticides alone, but had suggested that environmental toxins in food, air, and water may be associated with the syndrome, and therefore required further research. He maintained that much of the controversy had arisen because of inaccuracies and misquotation by the media, for which he was not responsible. Satisfied, the College took no further action.3 6 9 Prior to the reports of both the toxicologist and the epidemiologists, in January 1992, a consultant with a geo-technical and hydrogeological firm stated that a provincial report released six years previously had shown unacceptable amounts of nitrate in private wells drawing from the Abbotsford aquifer. He stressed that unless there was an effort to deal with the problem the aquifer water quality would deteriorate and it would be almost impossible to clean up. Whilst the city had been at pains to ensure that residents knew that the municipal wells were clean, the director of public works for Abbotsford said that employees dilute the water from one well, currently with nitrate levels of 8.68mg/L, with that of another less contaminated well to ensure that residents do not ingest high concentrates of nitrates in the drinking water. He also noted that cleansing the wells of nitrates would be far too costly. The highest concentrations of nitrates 366 Trudy Beyak, "'Syndrome' is still a mystery "Abbotsford/Matsqui & Mission News, Saturday, February 22, 1992, sec. A. p.2. 3 6 7 Trudy Beyak, "Specialty clinic planned for UBC," The Chilliwack Progress, September 25, 1992. 3 6 8 Glenn Bohn, "Physicians withdraw from toxic controversy," The Vancouver Sun, March 09, 1992, sec. B. p.3. 3 6 9 Ibid. 112 were below levels that would affect infants.370 Early in 1992, it was announced that Agriculture Canada, Environment Canada and the National Research Council were to investigate the impact of agricultural practices in the Fraser Valley on health. The Abbotsford aquifer contamination by pesticides and nitrates was to be the focus of this $1.4 million study. The Abbotsford director of public works pointed out the difficulty in estimating the number of pesticides used in the Valley, and speculated that some may be smuggled across the American-Canadian border without permits or regulation.371 Speaking at a Growers Short Course, the director of the soils and engineering branch of the B.C. Ministry of Agriculture, and another speaker from the B.C. Ministry of the Environment drew attention to the build up of nitrates in the groundwater over the past fifteen years, and the role of poultry manure in those excess nitrates. A new Code of Agricultural Practice for Waste Management will require manure to be stored on an impervious surface and to be protected from the rain, they said. 3 7 2 A few months later, the chairman of the B.C. Agricul