Quick association test:

In the context of disability, what is the first thing you think of when you hear the words “assistive device”?

I’m going to guess it was a cane. Or a wheelchair.

If the first word to your mind was anything other than those two, and you aren’t already a disability activist, do let me know. I’ll give you a virtual cookie.

So, I thought I’d start this series. I don’t have a snappy name for it yet (not for lack of trying; “the crutch list” is about the best I could come up with) but I wanted to start putting these things out there.

It’s been on my mind recently. Lauredhel has been writing about accessibility and challenging my thoughts on the meaning of that word. Similar to the above quick-think test, I’ve got a virtual cookie for anyone who, hearing talk about making something “accessible,” doesn’t immediately think of wheelchair ramps.

Bear with me.

I have what is called an invisible disability; that is, the fact that I am disabled is not readily apparent. There is no reason for any given bystander to think that I am disabled (and isn’t it telling, really, that there has to be compelling evidence for a person to be considered anything other than fully-abled). Further, my particular disability (fibromyalgia) comes with a heaping case of self-doubt, thanks to the social context surrounding it. What that means is that I typically don’t think of “accessibility” as pertaining in any manner to me. Let me reiterate that, to make my point perfectly clear: I don’t feel like access for people with disabilities is applicable to a person with a disability.

I’ve been taught, in so many words, that accommodation for my particular condition is an unfair burden on the rest of the world, so I shouldn’t even bother asking. If it requires a change in the routines and behaviors of “normal” people, it’s untenable. If there is something I want to do, I had damn well better be able to get it done without any assistance, because it’s too much to ask of greater society to make any meaningful changes for my benefit.

In short, I am to sit on the sidelines and watch as life goes by. If the coach has the good spirit to give me a few minutes on the field, from that moment on, I owe my life to him. And after those few minutes have passed, for the rest of my life, I am to suffer in silence, never to ask for any favor again, lest my status as Grateful Crip be swiftly changed to Selfish Bitch.

I never really thought much of my diagnosis (age 12) for those first few years. OK, I had some difficulty in P.E. but I hardly even recognized that for what it was. My body the day before my formal diagnosis was qualitatively no different than my body the day after, and the same can be said of my self-image. For those first twelve years, I had been a “normal” child, which meant that the experiences I had as that child must also have been “normal” too. I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Anyway, following from that attitude: even after that diagnosis, the denial I lived in would not allow me to change what I did, or how I did it, as a result of my condition. In my mind, I was still “normal.” So any adaptation would threaten the image I had of myself — after all, “normal” children don’t hold their pen differently, and “normal” children don’t have to stop and rest when walking long distances, and “normal” children can stand for the entire duration of their shower. Therefore, I should be that way, too.

And I think the weight of my disability was more than I could handle at that age. That’s why I couldn’t let myself accept any change in my life as a result of it. If I did, I would have to confront my condition, face to face, and accept it and all of its ramifications. I think I knew instinctively that that burden was too great for me to knowingly carry, and in all the wisdom of a twelve year old, decided to pretend it didn’t exist while carrying it anyway.

And you know what, I hardly even knew that you could adapt your environment to better assist you in living your everyday life. It’s not as though there is a thriving public dialogue about life with a disability and how to get through it more easily. PWD largely live their day-to-day lives shielded from the public, except for the occasional appearance in Hallmark films and other inspirational kitsch. Society, in general, has little to no concept of what disability means to a person’s life.

So. I was thinking about my twelve-year-old self, and my eighteen-year-old self, and what it would have meant to me to know about so many of the techniques and devices I use now, and to really, deep down feel comfortable using these things, because there is nothing wrong with them, and you don’t have to be embarrassed, and you are not deficient, you are not a failure, you can hold on to your pride even as you use these things. It is not a statement of strength to deliberately refuse any aid. And neither is it a statement of weakness! Your use, or not, of such things is not a statement of spirit or character, period. It’s a method. That’s all. It’s a method. It’s a way of doing things. A way of living life. And God knows, if there is anything I learn in life, it will be that there are multitudinous ways of living a life, and no one of them is better than the other. They just are.

Does it say something about you that you put your left shoe on before your right? That you put your seat belt on before you close the car door? Or that you pull your pants up before you flush the toilet? Does it matter, really, whether you cut your pork chop into little pieces all at once before you start to eat or one by one as you’re eating?

It’s a method. It’s not an embarrassment.

With that said, I’m going to start writing about the products, ideas, and tricks I use to keep my roller coaster ride of life just a little bit smoother. If they help me, they’ll probably help someone else. And, in the meantime, maybe “normal” folks will understand a little bit better what it means to live with a disability. (This disability. My disability.)

Consider this, I guess, sort of like the family recipe box. I’m contributing some tried and true mixes. I figure, maybe other folks will add theirs. And maybe there’s a twelve year old out there who will be helped by it. And that would make me very happy.

(Ed. note: I wrote most of this late at night after a failed attempt at falling asleep, and once this is published I am going straight back to bed. I reserve the right to edit for clarity once I’m able to reread it in the morning. Thanks.)