When we are disabled, we can be vulnerable to discrimination, systemic abuse, and having our basic human rights violated. Like Paul Caune points out in the film Hope Is Not A Plan, “When your civil rights are violated you don’t need a good hug, you need a good lawyer”.
At the very least, we need a good advocate by our side.
Despite Human Rights “recognition”, people with MCS/ES are systemically denied safe access to even the most basic institutions of “care” that most people take for granted due to chemical (and attitudinal) barriers and discrimination, like with the health-care systems, the very system where our health is supposed to be cared for. I do believe there’s even an oath that some providers take to “do no harm”, but sadly, as those of us with MCS/ES have experienced, that is rarely the case when chemical and environmental sensitivities are concerned. Add more disabilities, and it can become even more challenging and rare to have our needs met with equality, dignity, and respect.
Take Elaine for example. Elaine has MCS/ES and used a wheelchair full-time for nine years because of a hereditary neurological disorder, Spino-cerebellar ataxia. With luck, medication, some amazing people, and a reduction in toxic environmental contaminants, her mobility is now much improved.
However, due to these disabilities, she had her basic rights violated at a time when she was most vulnerable, when she required health care.
I was abused in hospital in several ways.
My mobility impairment made me a prisoner.
As a person with a wheelchair, my wheelchair limited my ability to get away from toxic substances. I underwent several surgeries in a row in several hospitals, getting sicker and sicker. It turns out I was reacting (allergic?) to anesthetic as well as tape, latex and many other medical products (which are usually made of petro-chemicals).
Due to my symptoms, I was often treated as a malingerer, or as a person with a mental illness or intellectual impairment (not that I should have any less dignity or worse treatment if that was so).
Since staff believed that chemical sensitivity did not exist, they would pretend it didn’t, until I was rendered more and more helpless.
I would have my wheelchair removed from my reach.
I had been left alone in my bed (since other patients might cause sensitivity -this is the alternating theory of believing and not believing) with no call bell.
I was talked about in the third person.
I had a phone pulled when I called social workers for help.
My cell phone was not permitted.
Certain staff in hospital would use personal care products which caused me to have asthma, impaired breathing, impaired cognition, skin rashes, heart arrhythmia, other conditions and ultimately a stroke…
Now, thanks to some very good medical practitioners, I have regained some mobility, but I do not attend medical appointments or go into hospitals to this day without a care attendant.
Elaine is fortunate to have made it out of the hospital alive, and to have access to a care attendant now. Not all of us who need someone to advocate on our behalf have access to someone who can be there to protect us (from those who “do no harm”). All we can do now, is hope… hope that we make it out without being given asthma, impaired breathing, impaired cognition, skin rashes, heart arrhythmia, other conditions and ultimately a stroke…
You can check out what Elaine does on her blog:
If you have MCS/ES and need to go to a hospital, and have the time, energy, an advocate or a lawyer, here are some resources that can make your stay healthier, IF the hospital decides to try to accommodate your needs.