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.