Categories
Betrayal

The Modern Environment

The producers of this 1983 CBC documentary couldn’t have been better intentioned. Four years later, at the first federally funded conference of persons with sensitivities, the producer agreed not to air it in the future, not because peoples’ stories weren’t real, but because the overall structure was based on an argument about the theories of one group of recently-arrived physicians. By 1987, provincial reports, even the federal government, had cautioned against tying the well-being of persons with sensitivities to the theories of “clinical ecologists” about “ecological illness”.

Clinical ecologists helped a few patients, mostly by listening to them, believing them, and helping them connect with consumer and industry advice about making needed changes to their environment. Unfortunately, while their approaches helped some patients, even several desperate cases, some of their scientific ideas and clinical practices were irresponsible and dangerous.

After consumers stopped using terms used by clinical ecologists, once we started using the term “environmental sensitivities” (1986) clinical ecologists changed their name to “doctors of environmental medicine” (1989) and pretended that our umbrella term “environmental sensitivities” referred to their unscientific and arbitrary sub-definition, the one that has become the stereotype. Some people you just can’t get rid of!

The “modern environment” stereotype

The most popular stereotype (and misconception) has it that environmental sensitivities are new, caused by the modern environment. In fact there are hundreds of years of science, centuries of institutional and clinical experience, generations of people affected. A 1985 Ontario report identified an existing, publicly insured method of diagnosis that has been used by most physicians for centuries. Health Canada and other federal departments and agencies were working to reduce harmful practices from 1988 to 1993.

  • creates atmosphere of mystery more appropriate for new phenomena.
  • ignores long-existing scientific, clinical, institutional, medical and consumer experience and solutions.
  • invisibilizes existing means of reducing preventable harm.
  • may disappear broader knowledge to favour a limited range of “new” research, treatments, disease models, products or services.
  • enables abuse by obfuscating liability for ongoing damages.
  • artificially divides consumers.

When he diagnosed me in 1981, my GP, who was studying to become a “Clinical Ecologist”, told me that clinical ecologists had discovered “ecological illness” in the 1950s, and that it involved food and chemical sensitivities that were “not recognized by medicine because they were new”.

What I did not know at the time was that sensitivities had long been known to medicine, and that it was the theories of “Clinical Ecology” that were not accepted. Their clinical practices were dangerous, and their billing unethical.

For instance, they regularly exposed patients to a risk of anaphylaxis without having emergency treatment available. They sold their patients homeopathic remedies while they, themselves, prescribed the need to purchase those remedies.

The worst part was that they would brainwash patients into thinking that if they didn’t support clinical ecology, the rest of medicine would think they were nuts. In fact, just the opposite was true.

However, I didn’t hear about these concerns until later, from other consumers, and much later, after reading the Ethical Guidelines of the Canadian Medical Association.

Once diagnosed, the first thing I did was to go to a University of Ottawa Medical Library to look it up. (I’d been a search junkie for about a decade by then, long before Google!)

Prior to 1966, when IgE-mediated reactions were isolated, medical literature used the term “allergy” to refer to all kinds of sensitivities.

Psychiatric Journal of the University of Ottawa, June 1980.


In the medical library (where the air was absolutely dead) it took about a minute in the card catalog to find a reference from the beginning of the 18th Century, cited in a 1980 mainstream Canadian medical journal.

Within an hour, I’d found dozens more articles, with hundreds of references dating back centuries.

Eugene Garfield
Eugene Garfield

In 1985, Eugene Garfield, PhD, President & Founding Editor of The Scientist published a three part bibliography. It provides an assessment of academic opinion before the discussion was subsumed under debate about “doctors of environmental medicine” and the “modern environment” stereotype. Because the definition of “allergy” has narrowed over time, his bibliography includes citations that go beyond what some professionals now might strictly define as “allergy”.

Mohammad Ibn Zakariya al-Razi
Mohammad Ibn Zakariya al-Razi

Hippocrates advocated doing an “environmental history”.

Categories
Betrayal

The Reverse Onus

(1982) Dr. John Maclennan addresses Human Ecology Foundation Ottawa Branch.
Government workers got sick in airless buildings.

Soon, I heard stories about abuse. Even after covering social justice and poverty issues, other disability and human rights concerns, international development, these stories were like body blows.

Workers were caused disability, then cast aside.

They told of former workers who loved their work, parents with kids in local schools, welfare recipients being denied benefits, and people whose lives were made impossible by family or peers.

Living in tents, on balconies.

Homelessness was and still is a big issue. It’s easier, now, to find unprocessed or organic foods, untreated cottons, unscented soaps and uncarpeted apartments.

The biggest abusers sabotaged serious needs by arbitrarily suggesting laziness, craziness or dishonesty, then demanding “prove you’re not”.

Magna Carta

(39) No free man shall be seized or imprisoned, or stripped of his rights or possessions, or outlawed or exiled, or deprived of his standing in any other way, nor will we proceed with force against him, or send others to do so, except by the lawful judgement of his equals or by the law of the land.

(40) To no one will we sell, to no one deny or delay right or justice.

Placing the Presumption on the Wrong Side

The second most common mistake people make is to subject persons with sensitivities to a reverse onus when they report their experience of repeatable, controllable circumstances, contrary to ethics, social convention and laws since the Magna Carta and the Charter of the Forest. This practice is unethical in any context, but becomes especially damaging in clinical medicine, education, social services and journalism.

  • injuries and deaths by adverse drug reactions, deaths of persons with consequent eating disorders, suicides of persons with undiagnosed psychiatric sequelae.
  • children and adults placed at risk or abused in response to behaviours resulting from consequent undiagnosed learning disabilities, psychiatric sequelae.
  • juvenile delinquency.
  • chronic health problems, financial damages, ruined careers, broken families, marginalization, suicides.
  • failure to accommodate, barriers to normal life activities.
  • need for income support.
  • denial of income support.

Dunton Tower, Carleton University.

The first suicide I knew of was a psychology professor who told me that he was unable to avoid central nervous system reactions because of his colleagues’ attitudes.

Letter from Dr. Ross Bennett, Ontario Chief Coroner, to three Ontario DMs.

The second suicide was a man Ontario turned down for disability benefits. The Medical Adjudicator in the case cited psychiatrist Donna Stewart’s 1985 CMAJ article. (Two Ontario Chief Coroners were subsequently involved.)

Donna Stewart, Psychiatrist

Stewart labelled 15% of the population as mentally ill on the basis of her subjective observations in seven negative assessments for an insurance company. CMAJ Editor Bruce Squires defended their decision to publish.

Our careers, our lives, our health and well-being, our children’s security were all being needlessly compromised because we were subjected to a reverse onus. Most professionals don’t understand how much harm they caused, by presuming to caste doubt on people’s ability to relate their own experiences. It’s not enough for them to say they were quoting experts. Professionals and their employers had an obligation to us directly as persons that they failed on.

Categories
Betrayal

Trivializing

Publicity Still, TWENTIETH CENTURY DISEASE.

The CBC documentary “TWENTIETH CENTURY DISEASE” was delayed because the person they were building the show around died after an exposure in a dental chair. Deaths were not mentioned in the documentary.

CBC Health Reporter Eve Savory.

Eve Savory and others at the CBC refused to mention the suicides when doing stories. Journalists generally expressed the downside as people being restricted from having a (modern) middle class life.

Kingston Whig-Standard, years later.

Journalists, health officials and various media characters turned some people’s well being and rights into a national sport. It took years for many of us to recover from journalists’ bullying.

Kim Brunhuber holds the record for being the last CTV Ottawa reporter to try to demolish the group. So far.

Trivializing the consequences

When people do not understand the serious consequences of misconceptions, they may not understand why it is important to discard stereotypes and correct misconceptions. Sometimes people portray sensitivities as causing only sniffles or mild headaches. They may not realize that carelessness or stereotyping may cause serious harm, including disability or death.

  • Child Abuse
  • Developmental problems
  • An inability to function
    • at work
    • at home
    • socially, emotionally or mentally
  • Ruined careers
  • Broken families
  • Financial hardship
  • Creepification
    • Characterization
    • Labelling
    • Stigma
    • Ostracization
  • Medical Complications
    • harm from medical interventions
    • aggravation of other conditions
Categories
Betrayal

Invisibilizing Persons with Sensitivities

Children brought parents together.

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.

Ottawa sources for sensitive persons, compiled by local consumers.

Finding housing, clothing, food or bedding, even laundry detergent was challenging, not to mention attitudes.

Margaret and Dr. John Maclennan, Environment Minister Suzanne Blais-Grenier, and Lynda Brooks representing consumers.

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.

Ontario Health Minister Keith Norton (Toronto Star Photograph Archive, Courtesy of Toronto Public Library)

Once organized, consumers pressured Ontario Health Minister Keith Norton about abuse and accessibility in Health care.

George M Thomson was appointed by Ontario Health Minister Keith Norton in 1984.

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”.

Ontario Health Minister Murray Elston received and promptly buried the report on environmental hypersensitivity disorders in 1985.

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.

Three years later, a new Ontario Health Minister, Elinor Caplan, was still confusing debate about clinical ecology with her Ministry’s legal responsibility not to cause preventable harm. (Toronto Star Photograph Archive, Courtesy of Toronto Public Library)

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.

Premier David Peterson ignored representations, even from the OMA, that patients’ social needs and legal rights were being neglected on the basis of an unrelated argument.
Categories
Betrayal

Dealing with Symptoms Instead of Preventing Exposures

Bruce Small did a lot of work on children’s issues, about homes and schools and attitudes. He and family members were getting sick, living in Toronto. ( Toronto Star Photograph Archive, Courtesy of Toronto Public Library)

“Like many others, by my 28th year I had become a battered collection of small but annoying symptoms,” he tells in his memoirs.

Small co-wrote a report on Pollution and Education for the Toronto Board of Education. The bibliography contains references dating back a century.

Parents pressed to have their children protected during the school day. Some school boards were accommodating students by providing special classrooms.
The Waterloo Board produced a specification for materials, how to build or modify existing classrooms to accommodate.
Health officials now invisiblize the role played by Open Air Schools for asthmatics and other “delicate children.”

Consumer rep Dr. Virginnia Salares built a safe home, an organic garden, and worked hard for kids in schools.

Dealing with Symptoms Instead of Preventing Exposures

Some authorities, including many school boards, believe that it is cheaper to deny or ignore sensitivities, to deal with the symptoms instead of preventing reactions.

  • horrific child abuse, instead of accommodation, sometimes receiving the sensitivities equivalent to ‘conversion therapy’.
  • developmental problems leading to juvenile delinquency, psycho-social problems in adulthood, including self-abuse.
  • suicides of persons with improperly diagnosed central nervous system sequelae.

Categories
Betrayal

Accepting Responsibility

Jake Epp turned around the federal government.
On the basis of reports from Ontario and existing scientific knowledge, former Canadian health minister Jake Epp turned around his department.
Epp’s successor, Perrin Beatty, addressed misconceptions throughout federal and provincial governments, among health professionals, journalists and the public.
Health Canada’s work continued under Benoit Bouchard, with a special focus on stopping the abuse of people with psychiatric sequelae in health care.

Dr. Bruce Halliday, MP, was a 1975 Canadian Family Physician of the Year. He was well-loved in Tavistock, Ontario and, in Ottawa, he exemplified the best of our democracy. Working quietly in Committees, Dr. Halliday inspired people to principles, to dignify their personal involvement in matters at hand.

Through politics and the public service, gathering input from constituents and from national organisations, including the Canadian Medical Association, Dr. Halliday enabled John Davies and others to start the rescue of people with sensitivities from misconceptions and harmful attitudes, in some cases lethal abuse in health care.

Dr. Halliday invited the following testimony:

At the Parliamentary Committee on Health:

1988 – Human Ecology Foundation
1988 – Chris Brown
1988 – Health Canada officials
1989 – Health Minister Perrin Beatty and Deputy Minister Maureen Law

At the Standing Committee on Human Rights and Disabled Persons

1990 – Chris Brown

Dr. Halliday also encouraged the health minister through correspondence.

Chronic disease epidemiologist John Davies is the unsung public servant who shepherded most of Health Canada’s work—addressing attitudes and reducing abuse in health care. He was appointed file manager on the issue shortly before coming out as a person with sensitivities in 1987.

Health and Welfare kicked off their work with a workshop designed to address attitudes. From the workshop, a publication was distributed to 3,000 Canadian targets including other federal departments, relevant provincial ministries, medical organizations and journalists.

During the same period, public servants with disabling sensitivities began to be accommodated in the public service. Increased attention was paid in procurement processes to ensure that materials used by public servants would be less likely to cause reactions. Even the Canadian Human Rights Commission was helping, then.

Canadian health officials realized that sensitivities are hugely under-diagnosed, and realized that people with psychiatric sequelae would be experiencing the most horrific forms of abuse. As this is also an area where there is a clear duty of care, the federal health department sponsored another conference in 1992, intended to begin a process of rescuing such psych patients from misdiagnosis and consequent abuse.

Categories
Betrayal

Stuck on the Fringe

While the federal government moved forward, Ontario governments continued to cling to denial and obfuscation. Elston, Caplan and Peterson ignored the responsibility to protect vulnerable persons in care, ignored warnings not to confuse debate about the recent claims of ‘environmental medicine’ with the reality faced by this long-existing group.

While Peterson’s staff ignored commissioned reports, there were several suicides.

These were people whose lives became impossible after their credibility was demolished by Ontario public servants and politicians, and by journalists who also confused the issues in the community, subjecting people to a reverse onus.

After the destruction of credibility and suicides, loss of income and homelessness were the main practical concerns, along with abuses in health care and social services.

The Peterson government ignored not only its own reports, but information distributed by the federal health department, as well as international sources.

NDP Premier Bob Rae violated the social contract that’s essential to any democracy.

The NDP government of Bob Rae, elected in 1990, was no better. They continued to focus on debate about the theories of doctors of environmental medicine and ignore the reality of sensitivities as known for generations.

Health Minister Evelyn Gigantes got eaten alive, as her CBC TV producer had cautioned.

Health Minister Evelyn Gigantes’s Chief of Staff lied outright about the findings of the Thomson Report, repeatedly declaring that the report had not identified an existing, publicly insured, method of diagnosis, when it had.

Gigantes’s Chief of Staff, Rob Sutherland, on the occasion of starting his pension benefits.

Several tens of thousands of people are dead because of those two mistakes. The people who have been killed have been killed without being identified, in fact because they were not identified. That makes it no less of a crime.

Former NDP Health Minister Frances Lankin.

Gigantes’s successors, Francis Lankin and Ruth Grier, likewise refused to differentiate between the theories of doctors of environmental medicine and the fact of sensitivities as known to medicine for centuries. Ministerial officials continued to lie about the availability of a publicly insured method of diagnosis so, instead of being identified, people continued to be injured and killed.

Former NDP Health Minister Ruth Grier.

Former Ontario NDP Premier Bob Rae

Despite warnings from consumers, organized medicine, psych profs, the Canadian Human Rights Commission, Ontario coroners, the Ontario Human Rights Commission, provincial reports, federal reports, international reports, even from other members of the NDP—Bob Rae’s three health ministers and Bob Rae himself were evidently incapable of making this distinction, of focusing on protection of the larger, long-existing group instead of on debate about the stereotypical fringe.

Ontario NDP Leader Andrea Horwath.
Ontario NDP Leader Andrea Horwath.

No matter how often the down side was pointed out to them, or by whom, the NDP continued to act as if the debate about the theories of doctors of environmental medicine was what mattered.

Even today, centuries of history and clinical experience with a much broader group, including people who react to chemicals, does not matter to the NDP. Nor, yet, do the federal recommendations the Ontario NDP ignored three decades ago.

Federal NDP Leader Jagmeet Singh.
Federal NDP Leader Jagmeet Singh.

It’s how New Democrats in Ottawa Centre, across Ontario, in Nova Scotia, in Manitoba, BC, in other provinces and federally, turn a blind eye on their abuse of persons with environmental sensitivities.

Meanwhile, the NDP shows no honest concern for the people being excluded, caused financial damages, injured, and killed, even in situations where there is a duty of care. That’s one hell of a lot of ongoing sorrow.

It is a mistake to think of sensitivities as a disease.

Sensitivities are not a specific disease entity. They result from any of a compendium of diseases, injuries, deficiencies and naturally occurring anomalies. “Environmental sensitivities” is an umbrella term, as was the word “allergy” before the identification of IgE mediated reactions in 1966. People with sensitivities react to substances, EMF, temperature, light or other phenomena at levels of exposure that do not seem to affect the majority.

The terms “multiple chemical sensitivities” (MCS), “environmental illness” and “environmental hypersensitivity” describe, at best, undifferentiable, arbitrarily-defined subgroups of persons with sensitivities who are not homogeneous within themselves, and who react to natural as well as synthetic substances.

  • creates confusion that can be used by unethical parties to obfuscate responsibilities, delay action on preventing harm.
  • leads to inappropriate research expenditures such as attempts to find a consistent physiological marker when the patient population is not homogeneous.
  • the stereotype of being sick because of the modern environment artificially divides persons with sensitivities, as happened when IgE mediated reactions were isolated in 1966.
  • protection and duty of care issues that apply across the aggregate, including people who fit the stereotype, are hidden behind legitimate but separate debates about the nature of various etiologies.