Happy International Disabled People Day! This year, the focus is on invisible disabilities. I’m Erin and I have an invisible disability collection. Today, however, I’m going to talk to you about Multiple Chemical Sensitivity, which is an Environmental Illness.
Environmental Illnesses are a group of disorders that are covered under Human Rights in Canada and in Ontario as a part of the AODA, where I live, but they are hardly ever included in accessibility plans.
People who have MCS can react to a large variety of things, often along the Volatile Organic Compound groups, which can be naturally occurring (like in essential oils, tree sap, and pollens) or chemically processed. Usually there are natural based ingredients in the processed product that are the root of the issue, but they are ubiquitous and current labeling laws do not protect people with reactions outside the most common allergens.
The most common sensitivity for people with what I call ‘beginners MCS’ is perfume and scented products.
Features of MCS include migraines, hives, eczema, food sensitivities similar to MCAS, brain fog, dizziness, asthma, hair loss, psoriasis, nervous system control issues, muscle control issues, vomiting, diarrhea, breathing issues, emotional regulation issues, body temperature regulation issues, sweating, nose bleeds, and I’m sure other things I’ve forgotten because I ran the dishwasher during the day and the rubber casket hasn’t off gassed yet and it’s been a full year so far. My lung lesions are caused by chemicals but I had to ask multiple doctors before one gave me a CT scan to prove I even had them.
There are only three treatments centres in Canada for environmental illnesses, and there are no environmentally safe hotels or places to stay if you can get an appointment at one, because hotels are not forced to be accessible. Most even spray ‘signature scents’ around their properties. It was over a year and a half wait to get into the Women’s College Hospital in Toronto as it is not properly funded. There are no official treatments. They try to get you seen by as many specialists as they can for the associated symptoms, but often people with MCS do not have traditional test results and then are left to deal with their disease alone, or forced to try out alternative medicines which are not covered under provincial healthcare and or insurance (should you have access to some). This leaves the MCS community vulnerable to scammy practitioners and commercialized health care fraud, which often makes their issues worse. Alternative practices that do help are not sanctioned as there has been no funding put into research or attempts at creating medicines. Promising medicines like Low Dose Naltrexone are not prescribed for symptoms related to MCS and you have to fight to even get a doctor who is familiar with the illness who will try to treat you. The knowledge management on this illness is so bad among healthcare practitioners that people are often prescribed anti-depressants and then gaslit about their symptoms. After having anaphylaxis while traveling internationally, a doctor in Toronto General Emergency told me there was no such thing as MCS and that I was having a panic attack. I went home and vomited foam on my own, with no blood tests to capture the moment. People with EMF sensitivity are the hardest hit with this issue out of the environmental illnesses.
The only option is avoidance and for most people that means complete isolation and no health care, as hospitals, doctors offices, physical therapists and more do not have accessible facilities. Dentists and Dermatologists even often sell scented products and use essential oil diffusers, making them among the worst of the health care providers for accessibility. Especially now, with inaccessible cleaning products being broadcast as the only option by Health Canada (while safe peroxide based disinfectant alternatives and unscented soaps exist), we have been completely cast aside. Health Canada even warns about the dangers of indoor VOCs, yet has created a situation where they are unavoidable. My son has no access to his school and it will take a long time for the chemical soup to clear. Most people with MCS have to do many treatments to get these pervasive products out of drywall. There are off gassing protocols we use and they all have limitations.
Pharmacies sell perfumes and often are the only places you can get flu shots. Canada Post locations are often located inside dry cleaners or perfume store pharmacies and do not offer accessible curb side services (even during covid). We do not have regulations on home dryer venting filtration to stop the onslaught of dryer sheet fumes that affect people and the environment. Airlines spray pesticides on planes and are not required to notify passengers. Many cleaning standards mandated by the government for food services are inaccessible, barring disabled people from working in entire industries.
Once you’re pushed out of the workforce by inaccessible standards and unenforced policies you have the option of not having your disability covered under Canada’s Disability tax credit program, and fighting to be on provincial disability which is at below poverty rates. The assistive device program in Ontario doesn’t cover air purifiers, needed to maintain health. Air purifiers are also not tax deductible as health expenses, neither is infrared sauna use, which is one of the only suggested treatments. There are no safe homeless shelters, and most low income housing is not chemically accessible. There are no scent-free, low VOC long term care centres. Food banks are not accessible and cannot handle requests such as no nightshades, pesticides or foods without preservatives. We do not have VOC ratings on products, we do not have a scent-free path similar to gluten free paths for foods and there is often contamination. I need a back brace and I can’t find one I don’t react to, which is a huge barrier to health care. So, we are recognized in Canada but not supported, or treated. That stops today, and how we do that is by:
- Funding research into treatments and capturing genetic information for those afflicted to add to the drug reaction database.
- Clearly stating accessible standards and not forcing disabled people to disclose their illness to get accommodations.
- Updating inaccessible workplace standards like for commercial kitchens.
- Creating a VOC rating standard for products as a part of environmental carbon emissions legislation.
- Creating a scent-free food chain.
- Creating accessible housing.
- Funding disabled people who can’t work and providing them with the tools they need to get well, like knowledgable doctors, air purifiers and grocery cards to purchase their own foods.
- Hiring people with MCS to create your policies and solutions.
Have a great day, ditch the perfume if you’re going out, wear your mask and stay safe.