Disability and identity.

[rivka]

I think most people who read this journal know that I have orthopedic disabilities. The overwhelmingly dominant one for most of my life was my congenital hip dysplasia, which led to multiple childhood surgeries, a particularly unpleasant side effect called avascular necrosis of the femoral head, osteoarthritis by the age of 11, (literally) crippling pain and increasing disability in my late teens and early 20s, and then a miraculous hip replacement at age 23 that reversed the downward trend.

The residual effects of what used to be my primary disability are pretty subtle. I can't run at all or do any kind of high-impact exercise, and the flexibility and range of motion in my right leg are limited. My right leg is noticeably shorter than my left; I wear a lift in my right shoe and sometimes (often? usually? I confess that I don't really notice this) walk with a limp. On the other hand, when I'm in adequate shape I can easily hike five miles or so over rough terrain, and I no longer have chronic pain or routinely take pain medication.

That's kind of a strange feeling. I went through some complicated emotional work surrounding my self-identification as a person with a disability, and the social, emotional, interpersonal, behavioral, and medical consequences thereof. Then the major factors underlying that self-identification melted away. Believe me, I'm thrilled about that. There's absolutely nothing in the world like not being in tooth-grindingly awful pain every day of your life. I highly recommend it. But it's weird.

So it's easy for me to think of myself as nondisabled now, except, of course, that I'm not. I also have this right arm that is half as long as the left; small-handed; missing a finger; incapable of bending at the elbow; and fairly restricted in movement at the shoulder. Most people would, uh, probably think of that as a disability.

I tend not to, unless I'm reminded. I don't think about the things I can't do with my arm, because I've never been able to do them. I was born this way. I can't carry big heavy stuff very well, but then, it seems like a lot of women can't - or don't. The other stuff is kind of harder to mentally generate: I can't bring both hands to my face or hair, which means that when I had long hair I couldn't braid it or put in a ponytail. I can't lift myself with my arms, such as levering myself out of a pool onto the deck. Some kinds of underarm turns in dancing are awkward. That's... I'm sure there are other things, but I can't think of any.

Other people do tend to notice my arm, of course. The funny thing is that although it should be very, very obvious, some people don't notice until they've known me for months. (In my experience, people who notice right away don't mention it or ask me about it. People who take a while are surprised enough when they do notice that it overwhelms their socialization not to ask.) Probably many more people do notice that the arm is short, but don't realize that it has restricted mobility unless it comes up in conversation.

There's a developmental pattern to it, too, as you would expect. Really little kids - my preschool-aged RE students, for example, or Alex's friends - don't typically notice that anything is different about my arm. At around five or six years old, kids notice and are very curious and ask. After about age seven or eight, they notice but know that they're not supposed to ask.

(For the record: I totally don't mind when young children ask. I usually give them a simple three-part answer: I was born this way, isn't it interesting that everyone is made differently from each other, it doesn't hurt or bother me at all.)

I had good friends in grad school who had young twins. I first met the twins when they were about three years old. When they were five or six, I went over to visit one day and suddenly they couldn't be in the same room with me - they kept running out. Fortunately, we were all good enough friends that their father was able to establish, and then tell me, that the problem was that they had suddenly noticed my right arm and were curious, but were overwhelmed by the knowledge that they shouldn't ask or stare. He told me, and I called them in and offered them the opportunity to take a good look, touch my arm, and ask questions. That solved the problem. But, I mean, I had known the twins for years at that point.

I wondered how it would be with Alex. Because I'm her mother and we're so often physically entwined, she's noticed the differences far earlier than most kids seem to. She counts my fingers, for example. Or sometimes it comes up in conversation: "hold my big hand for this," or "I can't reach that with my little hand." So she's very aware that I have a little hand and a big hand, and nine fingers, and that she has two big hands and ten fingers. (She had to ask about that, actually. "Which one is my little hand?" "You don't have one. You have two big hands.") She doesn't seem to be at all aware that this constitutes a disability or a problem, and she doesn't seem to be aware that it makes me different or strange in any way.

In the car the other day, she was playing a game. "How many shoulders do people have? Two! How many noses do people have? One!" (I'm not sure where this game came from, or why it was fun. I've learned not to ask.)

"How many fingers do people have? Ten!" she said.

"How many fingers do I have?" I asked her.

"Nine!" she said immediately. Then she added, "But some moms have ten fingers."

"Most moms do have ten fingers," I agreed.

"Most moms have a big hand and a little hand," she said authoritatively.

"Really? Does Miss Emily have a big hand and a little hand? ...How about Miss Suzanne? ...How about Allie and Nick's mom?"

None of them did, she agreed.

"Most moms have two big hands, just like you and Papa," I explained. "My little hand is special."

That was that. I find it interesting that to Alex, I am so much her mother that it is impossible to separate my individual characteristics from the characteristics of mothers-in-general, even when the difference should be blindingly obvious. She has never seen another mother with one little hand, but if her mother has one? Then it's evidently just a motherly kind of thing.

Comments

[glinda-w.livejournal.com]

Yeah, that. My mother was blind (hereditary, childhood onset); it was normal for her to have a Braille-labeled kitchen timer and a cup for measuring liquid with grooves at the 1/4, half, and 3/4 mark and for her to fill it by having her finger in the cup at whichever line she needed and for her to do the prep work for canning but my father to do the actual lifting of jars in and out of the canner and and... Two of my aunts were also blind, and one had a child; other family friends were a mix of blind or sighted, so blindness just didn't register with me.

I'm not clear on how old I was when that changed from "normal for all mothers" to "normal for my family" though.