After working for 30 years to support their family, a member of the Well Earth Collaborative’s (WEC) career abruptly came to an end when their office building was sprayed for an insect infestation.
“I only put the pieces together after. But it was a really toxic spray and I developed multiple chemical sensitivities overnight. I can’t tolerate any chemical odours, smoke, and even most food odours,” they said.
They are remaining anonymous to avoid retaliation from their former employer. The chemical sensitivities meant they could not work any longer. They were fired from their job and were forced to start living in their car in a park. They are still trying to get compensation from their insurance.
“If I had safe housing and access to all the detox, diagnostic and other therapies my specialists suggest, I could get better and live with my family and start working again,” they said.
The Well Earth Collaborative (WEC) is a not-for-profit that focuses on environmental sensitivities and environmentally linked chronic complex conditions.
The WEC collaborates with patients and their communities to develop solutions, preventions, and education. It also focuses on the roles of social infrastructure and social justice.
Creating the Well Earth Collaborative
The WEC was founded in 2018 by Dr. Riina Bray, an environmental health consultant and assistant professor of Family and Community Medicine at the University of Toronto. David Fancy, a professor in the Department of Dramatic Arts at Brock University, is the co-founder.
It all began when Fancy had mercury amalgam fillings removed, which caused him to develop extreme electromagnetic hypersensitivity (EHS).
EHS is an allergy to human-generated electromagnetic emissions from cell phones, WiFi, cell towers, power lines, and, in Fancy’s case, even light bulbs.
The Canadian Human Rights Commission (CHRC) recognizes environmental sensitivities as a disability protected under the Canadian Charter of Rights and Freedoms. However, Canada Health maintains there’s no scientific evidence to support the existence of sensitivities to extremely low electromagnetic fields, like the ones that electronics, powerlines, and cell towers emit.
Fancy didn’t stop working, but he experienced brain fog when he was around light bulbs, or using a computer. Fancy literally lived in the woods when he wasn’t working. That part of his healing journey lasted three years.
During that time, Fancy not only provided lateral support to others living through the same experience, but discovered Dr. Riina Bray, an environmental health consultant and professor of Family and Community Medicine at the University of Toronto. Bray had been working in environmental medicine since 1996 and had a wealth of knowledge to share. She founded WEC in order to address conditions like Fancy’s, and Fancy came on board as a co-founder.
A disabilities access problem
In an interview with rabble.ca, Fancy said, “there is a legitimate long-term record of repeated scientific experiments that show biological, and by extension, health effects of EMF. Hundreds if not thousands of scientists have been calling for decades now for changes in the so-called safety regulations.”
“There is a history of demonstrated capture of industry by regulators,” Fancy said, pointing to the historical lack of regulations for thalidomide, asbestos, tobacco, and DDT.
The lack of regulations on EMF is “part of a long-term tradition of these forms of exclusion,” Fancy said.
Fancy views the problem through an intersectional lens. People who are racialized, who are subject to being gendered in particular ways, and who are constructed as being disabled, he argues, are frequently the people who are the sickest due because of existing health inequities.
“This is actually not a medical problem,” Fancy said. “It’s a disabilities access problem.”
In its current form, the Accessibility for Ontarians with Disabilities Act (AODA) doesn’t address, or provide, accommodations for people living with multiple chemical and environmental sensitivities.
Because their chronic conditions have been identified, many people with environmental sensitivities rely on Ontario Disability Support Program (ODSP) for their income. They receive monthly payments of $1,200 to cover housing, food and all necessities. Currently, a one-bedroom apartment is over $2,000 per month in the Greater Toronto Hamilton area.
“I’m trying to live on $1,400 a month. I worked hard when I was younger and got myself an education and a good position as a teacher,” said another WEC member. They have also chosen to remain anonymous to avoid retaliation from their former employer.
After getting a tick bite on a camping trip, it took four years and worsening sickness to get diagnosed with Lyme disease. They got fired from their teaching position.
“I’m sick as a dog, broke, and wondering why the hell I’m even here some days. I regularly think about medical assistance in dying, but then I see other people with Lyme with more resources that get better with the right support. I really miss teaching,” they said.
It’s important to keep in mind, that many of those receiving ODSP payments can’t afford to live, let alone heal. And, even if they could find an affordable apartment or townhouse to rent, the scents and electromagnetic emissions from neighbours would impact their health.
The lack of available support means that people with environmental sensitivities are increasingly turning to Medical Assistance in Dying (MAiD).
Recommendations for expanding access ignored
By the province’s own admission, there are over 740,000 people living with chronic, long-term environmentally linked complex conditions.
The Task Force On Environmental Health produced a final report called Care Now: An Action Plan to Improve Care for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS) in 2018.
The committee acknowledges that these are profoundly life-altering, stigmatizing chronic conditions, that have a devastating impact on people’s health and quality of life.
The report includes multiple recommendations. Among them are adjusting OHIP fee codes to include ME/CFS, FM, ES/MCS in order to improve patient experience and make it more efficient, cost-effective, and positive.
The report also recommended that the OHIP system collect data on these conditions. This could enhance their credibility, and ensure Ontario follows through with the proposed system of care.
The committee also proposed that the Ministry of Health and Long-Term Care support the development of a centre of excellence of care, education and research in Ontario to provide specialized care.
The final recommendation asked the ministry to provide regular updates and reports on the progress in implementing their action plan – for both public accountability and to continue to engage people and organizations who have a role to play in the proposed system of care.
To date, none of the ten recommendations have been implemented.
Unfortunately, it’s become increasingly clear that the entire regulatory framework, and the government responsible for updating, initiating, and overseeing the regulatory framework, have little interest in these debilitating health conditions.
Too often there is a repeated denial of scientific facts that have been well established over decades. Symptoms are dismissed as being psychosomatic or psychological in nature. Eventually, psychosocial realities emerge due to alienation, pain, loss of income, lack of support, and the marginalization of families and communities.
Developing solutions
Bray has pioneered numerous initiatives over the years to address environmental sensitivities and related complex conditions. She hosted a symposium on the effects of WiFi and has created guides for school children. Currently, Bray is in the process of creating medical education courses to help colleagues across the medical system intervene.
WEC has also initiated campaigns that raise funds to buy apartments and houses for individuals with overlapping disabilities. These initiatives are targeted to assist those who see no viable options to reduce their suffering other than MAiD.
They are also part of WEC’s “broader vision,” Fancy said, to act according to systems other than “dominance and capitalist forms of extractivism” in our relations with other people and things.
WEC strives for power-sharing within the organization, according to community-led expertise that includes patient empowerment and support groups.
In June, WEC launched a year-long fundraising event at Bela Farm. The goal is to raise money to build tiny homes close to a medical retreat centre where individuals with environmental sensitivities can heal.
WEC would like to eventually roll out the tiny home model across the province to ensure people with EHS and chemical sensitivities have safe spaces that offer both short-term respite and longer-term healing.
Developing these housing supports is absolutely urgent. It offers people with these chronic conditions an alternative to MAiD, and could be the only alternative they have access to.
These structures need to be located well away from electromagnetic emissions as well as chemical pollutants including pesticides and scents. They could be situated on Crown land, or land that has been donated, borrowed, or leased for 99 years. WEC simply needs a legal relationship with that land.
Bray hopes that their work will “knit together a fabric of support, security and validation that will carry patients through the long journey of healing – a journey which takes time and reintegration within the context of wholesome communities.”
For more information about environmentally linked conditions and the work of WEC listen to Nicoll’s interview with David Fancy here.
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