In the 1980s, people with sensitivities were mostly trying to protect their children in schools, keep their jobs, make changes in their homes, avoid disabling reactions, some just to survive.
Finding housing, clothing, food or bedding, even laundry detergent was challenging, not to mention attitudes.
We needed methods and sources. We needed each other. We needed to talk to our neighbours. We started to speak for ourselves, much to some people’s horror.
Self-Help Priorities – 1980s
- Being Believed, refuge from creepification and abuse.
- Taking responsibility for doing what we can despite assaults and special needs.
- Communications issues – family and friends.
- Emotional issues.
- Building an organisation
- Building membership.
- Local Committees.
- Environmental changes – housing, workplace.
- Coping with / recovering from reactions to workplace.
- Finding Sources.
- Food and nutrition substitutions.
- Clothing, soap, personal products.
- Beds, bedding, and much more.
- National
- Participation and governance.
- First federally funded conference of persons with sensitivities.
- Better standards in clinical ecology.
Once organized, consumers pressured Ontario Health Minister Keith Norton about abuse and accessibility in Health care.
Norton appointed former Provincial Court Judge George M Thomson and a blue-ribbon panel to produce the Report of the Ad Hoc Advisory Committee on Environmental Hypersensitivity Disorders.
A thousand Ontario patients outlined what they reacted to, their symptoms, their stories. More stories. More child abuse. More lost careers. More homelessness. More suicides.
Report of the Ad Hoc Advisory Committee on Environmental Hypersensitivity Disorders.
Note the use of the plural in the title of the Committee’s report. It’s not about a single disease. There cannot be a single physiological marker. There is no “normal progression of the disease”.
The Committee recommended public support for avoidance, as treatment involves helping patients identify and avoid the things they react to.
The Committee identified an existing, publicly insured method of diagnosis—the patient interview, augmented by an environmental history, a patient journal, and possibly removal-reintroduction testing.
This is the most important finding that subsequent Ministers of Health got wrong—in Ontario and across the country—the existence of a publicly-insured method of diagnosis. A means of diagnosis brings with it certain legal responsibilities.
The Committee also found the polarized debate about clinical ecology to be an issue separate from protecting patients in situations where there is a duty of care.
The Committee stated outright that the position, “all the identified patients are emotionally ill” was “clearly untenable”. This was the position of the Ontario Deputy Minister of Health of the day. People were being killed because of this, and yet it was also the position of the subsequent Deputy Minister of Health, according to George Thomson while Ontario Deputy Minister of Labour.
