Guest post and images by Laura J Mac
What always strikes me during conversations about how to persuade service providers to accommodate our disability is how much extra work we have to do just to participate in simple survival stuff. I mean, “simply” tracking down professionals who are willing to accommodate is a chore and a half. The luxury of “having a good relationship” with a service provider falls way down on the list because it’s usually one or the other.
Nobody would think twice about someone who uses a mobility device asking if there are ramps and elevators but it seems that our need for fragrance-free and reduced chemical exposure is perceived as a “preference” rather than a medical necessity. That perception leads to the idea that accommodation of our disability is an “option” (and generally it’s an “option” that service providers aren’t willing to make available.) It’s not that we don’t “like” fragrance, these chemical exposures cause neurological and physiological problems that interfere with our ability to function on a daily basis.
Social engagements and relationships, work environments, groceries and errands, medical and dental care, even taking a walk during the day… there isn’t any part of our lives that isn’t affected by the lack of accommodation or awareness. We take major risks by participating in every day life, and then suffer through the recovery time (which might be hours, days, or weeks).
If medical, dental, and psychological support services were fragrance-free by default, in the same way that mobility access is mandated, our lives would improve exponentially.
The only “treatment” option available to people with MCS/ES is avoidance. That’s currently impossible for most of us so we just get sicker and less able to function… ultimately this lack of accommodation is going to cost us (as a society) loads of money through lost productivity, a heavier reliance on social assistance and other social services, and added demand on our already overtaxed healthcare system.
I won’t even get into the fact that despite MCS/ES being a recognized disability since 2000 (in Ontario) and 2007 (nationally) that many healthcare professionals don’t have any awareness of the condition, or simply don’t “believe” it is a “real” condition and refer us for psychiatric care. Granted, it’s beyond depressing when healthcare providers simply won’t listen, so the psychological support becomes necessary as a result of the lack of care. Add that to the depression that often accompanies acquired disabilities (but is not the source of the condition by any stretch of the imagination)…
Suffice to say it all adds to a complete lack of quality of life. It’s akin to making wheelchair users build their own access ramps while denying that they need the ramps in the first place by claiming that they’re “just depressed”. In a word: brutal.
The problems won’t go away by declining service to people who are disabled. But that is what we face more often than not.
Laura J Mac is an Ontario based artist with MCS.
Keep in mind that in the ” “Guide to the Accessibility Standards for Customer Service, Ontario Regulation 429/07”, it states:
”Equal opportunity means having the same chances, options, benefits and results as others. In the case of services it means that people with disabilities have the same opportunity to benefit from the way you provide goods or services as others. They should not have to make significantly more effort to access or obtain service. They should also not have to accept lesser quality or more inconvenience.”
See Accessibility, Human Rights and MCS/ES for some accommodation resources