Disability: a different reality

[sonia]

I got together with a friend to discuss a guest speaker at the business networking event she runs. The guest speaker was touting a new kind of energy work, and she chose as her "hook" the idea that one can't run a business unless one is operating at peak health. I saw people all over the room swallowing the hook and eagerly looking to her energy work to save them from business disaster.

I've been dancing around the disability label for myself for a while now. I have crossed eyes, very little depth perception, a large blind spot, and wear glasses that don't correct my distance vision all the way to 20/20. I've only recently realized how hard I work to compensate, and it's one of the reasons I ride a bike instead of driving a car. Does that count as a disability?

I have to carefully monitor what I eat and exclude a long list of common foods, or I get digestive upsets, brain fog, lack of energy, and crashing despair. Does that count as a disability?

If I breathe even small amounts of fragrances or chemicals, I have headaches and joint pain for days. Does that count as a disability? Those last two combined certainly curtail my social life, limit my participation in business networking events, and make it difficult to travel.

I received catastrophic levels of abuse in my childhood, and have been working with the ensuing PTSD for 20 years now. Does that count as a disability?

My friend told me that after she gets her eyes dilated at the ophtalmologist's, she goes home and goes to bed until her eyes return to normal, because she is so unused to having her physical faculties diminished in any way. I peered across the cafe table at her, trying to imagine that. "We live in very different realities," I told her.

Our conversation veered over many subjects, and I never did talk to her about the tiny steps that have built my business, doing what I can when I can. I never did ask her to wonder what people do all day if they can't count on peak health from one moment to the next, or maybe ever.

I still don't know if the disability label applies to me. I do understand at a deeper level that it's not us and them, disabled people over in a corner and the rest of us living our lives. We're all living our lives, in whatever situations and bodies we find ourselves.

Comments

[jesse_the_k]

If you're really wanting validation, from someone else who regularly has spasms of self-doubt, I say, "yep."

[sonia]

Thanks for the validation. Mostly I'm sitting with the question. Or with the resistance. I do admit that putting it all in one post makes it look less doubtful. I appreciate hearing what it looks like from the outside.

PS: Fascinating icon!

[jesse_the_k]

Outside, inside — that's one of the strange things about the "disability identity." Its meaning depends on who's watching (writing, judging, avoiding). The U.S. safety net, what there is of it, demands total inability to work: unless you're completely incapable of substantial gainful employment, you're not eligible for benefits. The ADA, on the other hand, has an intentionally broad remit: any an impairment that substantially limits one or more major life activities (including bodily functions). Some people's impairments are readily apparent; others are not evident and require disclosure. Many of the things you mention are in that exceptionally tricky category where, because the world-at-large is so inaccessible, people can't even know who you are. (At one time I was as chem/frag sensitive as you report, and it's a nasty loop.)

Some people with physical disabilities who are healthy want to maintain distance from those of us who are ill. The stigma barriers around mental health issues are different from and in addition to those for physical health.

PS: Thanks! Made to my spec by the fabulous jackshoegazer. The irony, of course, is when I most want to represent one of my labels, I'm posting in contexts where flashing icons might be loathesome.

[sonia]

Dave Hingsburger's Statement of Fact posted today is startlingly relevant to this discussion.

Labels. Tricky all around. For now, I'm looking at how I label myself, so I have all the time I need to sit with resistance.

I'm resistant to "ill", too. If I eat the right foods and breathe clean air, I feel great. Nothing wrong with me at all! (Yes, I'm aware that's arguable.)