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

[kate-schaefer.livejournal.com]

The repetition of big hand and little hand made me think of traditional time-telling for small children. I assure you that I have never before thought of Mickey Mouse in connection with you, but now I will do so until I am distracted by something shiny. Oh, look: raindrops on the neighbor's bamboo, in the morning sun.

[tdanaher.livejournal.com]

I live this attitude. My mom was stricken with a disease in her childhood that left her with no heel on her right foot and a left leg significantly shorter than her right. Consequently, she has a pronounced limp and wears special shoes. That's how I've always known her. Moms have limps and need to have their children go and get the shopping cart and bring it back to the car so they have something to lean on. Then, moms are the kind of people who shop by leaning their chests over the cart handle to take some of the stress off their legs. That's normal to me. It's even, come to think of it, a sign of maturity and being grown up.

[wild-irises.livejournal.com]

We have a colleague in the office who has one arm; the other is missing from just below the elbow. At Take Your Kids to Work Day in April, my friend C's granddaughter asked him what happened to his arm. He gave a matter-of-fact friendly answer (he had his son with him at the time, so he probably spends a bunch of time with kids): "I was in an accident when I was little and they had to cut it off." All was well, except that C told her son and daughter-in-law parents and they were mortified and wanted to call the man and apologize. C and I and the colleague all think this is a very reasonable question for kids. Thus, I was especially interested in the age breaks you give.

Does Alex know how many people are in love with her without ever having met her?

[pbrim.livejournal.com]

My parents have the same birthday, which confused me when I was little. At first, I thought all parents shared the same birthday, just as they shared the same anniversary. Then I later noticed that my grandparents didn't share birthdays, so I decided that people just shared a birthday when their kids were small to simplyfy things, then went back to their original birthdays when the kids were older. Oddly, I don't recall any mental linkage between the day of your birth and a birthday celebration.,

[rivka.livejournal.com]

I could totally see my child-self constructing that chain of logic. It's one of the things I love most about kids. They really work to figure out the world, and develop explanations for things based on what they know, and aren't held back at all by the many things they don't know.

[rivka.livejournal.com]

Does Alex know how many people are in love with her without ever having met her?

I hope not.

I think her default is to expect people she meets to be kind and loving. But if we're doing our job right, she thinks that's because of what people are like, not because of what she's like.

[ratphooey.livejournal.com]

I love how whatever is normal for a small child? Just is normal.

[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.

[adrian-turtle.livejournal.com]

The local little girl (omigod--the local EIGHT year old, who is now more than 4.5 feet tall and I should stop calling her "little" already) didn't seem to have that hiccup when she was learning how many fingers people have. Her daddy has what many people think of as 9 fingers, though I suppose it's technically about 9.2. So they could count fingers and get to 10, if they wanted to. It's weird.

The first part of your post, about how it changed your life to have your hip pain and walking difficulties get better, is also weird and I'm glad you shared it. I've been thinking the new doctor I saw next week might be able to fix my left shoulder, which would be great. And not having my shoulder hurt all the time, and being able to use my left arm freely, would have some really life-changing implications...even though it wouldn't get me out of chronic pain.

[nelc.livejournal.com]

This is a bit complicated, and I'm going to have to leave some questions open, and I don't know what my point is, really, but....

My half-sister, older than me by a few years, was born with a seriously short fore-arm on the right. Completely normal arm down to the elbow, fore-arm just a short cone, a couple of inches long. If you looked very closely, you could see five little buds, maybe a couple of millimetres across, on the end.

When I first met her, I was in my mid-teens, I think. Our dad introduced us and I went to shake her hand, when I noticed that it appeared to be immobile and made of rubber. So I switched hands and we shook lefties. At some point later in her life she gave up the prosthesis, and just walked around with her sleeve rolled up whenever I saw her. That way she could grip things in the crook of her elbow without the dumb rubber hand getting in the way.

When she died, she was buried with the prosthetic, which I thought was a shame; however she felt when we were teenagers, she wasn't embarrassed by her tiny hand as an adult. I was kind of surprised to see it in the coffin; I hadn't realised she still had it. I still wish I'd said something to the undertaker, but I figured my half-nieces had approved it.

[ailbhe]

Oh, both!

[ailbhe]

What comes to mind, oddly, is Nemo.

Um. I'm not sure what to make of that.

[acceberskoorb.livejournal.com]

When I met you I had lived in Baltimore for about a month and in that time I had met four people (FOUR!) who seemed to have either somewhat or very shortened arms. Though you took the gold for having the shortest arm and daintiest hand I had yet encountered, in the moment I couldn't help thinking it was less something unique to you and more a kind of trend I ought to get used to.

Seriously, I'm very happy to have read your post today, because I haven't been very happy with "modern medicine" lately and the story of your hip replacement is a great reminder that there is much good there as well. Blessed Be the things that miraculously transform our lives.

[ailbhe]

Oh, duh. He has a small fin and Linnea watched it while I was bedbound. There's obvious for you.

[rivka.livejournal.com]

I think it's safe to say that no one has ever described me as "dainty" before. ;-) I do have to ask: were the other three people mothers? Was Alex onto something I didn't yet understand?

The hip replacement really was an amazing thing. It came after a long string of more-or-less failed medicine, which made it seem all the more miraculous.

[lizzibabe.livejournal.com]

Thank you for sharing this. Although, having read the Mote series, I now have this mental image of you explaining "On *this* hand...but on the *gripping* hand..."

[bosssio.livejournal.com]

I have to say, your post about your hip replacement puts your comment to me about congenital hip dysplasia in new light (the one where I cavalierly mentioned I was also born with congenital hip dysplasia but they somehow fixed it when I was a baby and I never had any problems, and you mentioned years of pain and surgery to correct yours...).

I had always put this fact about my birth in a "odd but irrelevant" category - like the fact that my second toe is bigger than my big toe.

Instead, perhaps it should be put in the same category of my nearsightedness - where, but for the grace of medicine, I would be seriously disabled. I am considered legally blind without corrective lenses (as are many severely nearsighted individuals), and without glasses, I would be unable to function in most of society. But I have glasses, and therefore, poof, the disability is gone.

My aunt, who, as a result of a stroke at age 7 months due to whooping cough, has limited mobility in her right side, cannot use her right hand, and walks with a mild limp. Despite the fact that these limitations don't really limit her all that much (her current limitations are more due to age than anything else), she was socially discriminated against due to her "disability" - prevented from attending university, told the best she could hope for was a life care taking my grandfather (who was pretty emotionally abusive, and diabetic and needed full time care after his wife died).

Dunno, it makes it all clearer how much disability comes from other people and not inherent limitations in the individual. The Social model vs the medical one, I think it is called.

[mjlayman.livejournal.com]

I came to disability as a adult and most of the kids I know already offer to do things for me that they know I have trouble doing. But when I wear a swimsuit and go to the pool, there's always one terrified kid and an angry mother. Fortunately, they're public pools and I get to stay. (For those who don't know, I'm partially paralyzed on the left and have balance problems because of a medication-caused stroke in 1987, and my second renal failure in 1990 left me with purple scars and stria all over my legs and arms. I have significant arthritis and gout. Oh, and I'm fat, but that's not a disability.)

I met Rivka online and knew her disabilities long before I met her in person, and when I met her at Capclave, I didn't even notice the arm until after we'd talked a bit. I have to say, she can shuffle cards better than I can.

[rivka.livejournal.com]

Hee. I guess Michael will have to be the one to teach her to tell time. "But Mom, your little hand is pointing to the bookshelves."

[ex-serenejo.livejournal.com]

Kind of adorable, that kid of yours.

Datapointing: I didn't notice the size of your arm/hand until we were dancing (that dance is one of my favorite memories, by the way). I didn't really know until years later (probably as the result of some post of yours) that there were mobility issues with it, although now I think of it, I might have known and had it fly out of my head, because honestly, it's not information I need. ;-)

[ex-serenejo.livejournal.com]

I had always put this fact about my birth in a "odd but irrelevant" category - like the fact that my second toe is bigger than my big toe.

This reminded me of an experience I had recently.

(Background: When I was a child, I had severely pigeon-toed legs/feet. I was in a wheelchair by the time I was 6, but then I had major surgery on both legs to straighten them out, spent most of a year in either casts or rehab, and really haven't had a problem since. I mean, the surgery was at age 7, and my memories of the 4th grade, when I was 8, don't involve any problems with mobility at all. I stand funny when I'm at rest, to my mother's chagrin, but I can walk fine.)

The recent experience was when I went to the foot doctor for a consult on what my GP thought was a bunion. I don't have a bunion. I have deformed feet -- deformed enough that I really didn't need to tell the foot doctor about it. He could see from the x-rays. And it was weird -- I had never (even when I was in a wheelchair) thought of my feet/legs as deformed -- just crooked, and then straightened. It really never occurred to me that my feet might not be shaped like other people's feet. They're really, really not.

(Proof that I'm weird is that I found this information about myself fascinating, not unpleasant in any way.)

[minnehaha.livejournal.com]

As a less-than-six-year-old, we had a neighbor, one of two maiden lady sisters, who had a shorter right arm and small right hand. I remember (though it was so long ago, now) how impressed I was with the way she held her dogs' leashes in her small hand: palm up and wound in her fingers.

Equally impressive, to us kids back then: they had Dalmatians: the very same spotty dogs the firemen have!

K.

[acceberskoorb.livejournal.com]

Well, you know, I have very dainty toes, but one certainly wouldn't describe me as dainty, let's not get carried away!

One was definitely a mom the other two I'm not sure...hmm...

I suppose only those miracles that come in the wake of pain, suffering, tragedy and enforced patience actually get called miracles. I remember having a conversation with my new roommate freshman year of college about how people who have suffered are far more interesting than people who have suffered less, though I am quite sure that we were both holding onto the thought in the back of our brains that we wouldn't mind being a little less interesting.

[rivka.livejournal.com]

In my experience, when you have health problems as a little kid which don't noticeably carry over into adult problems, you often grow up understanding those health problems in a little-kid way. I had to sit down with my mother, as an adult, and memorize the list of surgeries I had as a kid and what they did - even though I'd been there for them, and had the rationales explained, I didn't understand them from an adult perspective.

The biggest discrepancy for me was that, when I was a kid, I always thought that each surgery would be the last. Then I was always surprised when another surgery was proposed. I mentioned that to my parents once, in adulthood, and they were surprised (and dismayed): from their perspective, it had always been clear that I would need many surgeries, and they certainly never told me that any given one would be the last. I drew my own incorrect conclusions.

So I wonder if your mother has always known that your feet are deformed, and assumed you knew, and never thought to mention it explicitly.

Dainty

[hazelchaz]

Really? Sometimes I see anyone smaller than me as "dainty." And anyone bigger as "large."

Although my wife is defined as "just right..."