Sunday, March 8, 2009

The Perils and Privileges of Invisible Disability

This isn't exactly a LOLtopic, but invisibility of any sort calls for a kitteh - from I Can Has Cheezburger?

Spurred partly by my recent scary health experiences, and partly by posts from Julie at Alas and Daisy at Daisy's Dead Air, I've been thinking about the peculiarities of invisible disability.

About a week into my bizarro neurological adventures, I started to go public with my colleagues and a few students. I realized I wasn't going to be healthy again overnight. It became obvious that I might need some extra support - which I got in abundance.

The first group of colleagues I told were shocked. "But you looked like nothing had changed!" "Nobody could tell that there was anything wrong!" "Really, your lecture was just fine!"

What shocked me, upon reflection, is how gratified I felt to hear this. I had a mild tremor in my lower left lip, and I was convinced I must look like Inspector Dreyfus from the Pink Panther movies. My facial muscles were freakishly tight and I was sure my face resembled a death mask. Brain fog interrupted my ability to string together sentences, and I perceived my own lectures as rank gibberish.

I suppose it's understandable that I was glad to hear that none of this was evident to an outside observer. And yet, I think my reaction also betrays an investment in "normalcy" that I really ought to have shed by now. I've been teaching about disability in women's studies classes for years. My partner has a somewhat visible physical disability. While in grad school, I experienced another invisible, ultimately temporary, but fairly long-lasting disability when I was diagnosed with chronic fatigue syndrome.

What does it take for a gal to get over the ideal of normalcy? Why was passing so important to me?

There's a serious privilege built into invisible disability. While I'm still pretty far from normal (my hand tremor is acting up as I type this), I can choose whether to disclose it to people. I don't have to respond to questions from strangers about what happened to me - something that happened to my partner all the time when he was wearing an arm brace. It's as though any piece of orthopedic equipment makes your body and its history public property. I'm very relieved not to have to defend my personal space and privacy.

Faced with wearing a wrist brace that might help her heal but would call attention to her disability, Daisy explains why she can't quite make herself do it.
It makes me appear vulnerable and calls attention to my age, in a job market in which older workers are getting left behind. I try to look energetic and "happy" on my job, since we are "selling a lifestyle" and all that shit: I feel pressure in the health supplement industry to always appear healthy. Since it's a job in which people are always talking about their health, I am duly questioned about mine, when there are many times (like now) that I'd rather not answer. The overall sentiment seems to be: well, if you know so much about supplements, why are you falling apart? Aging is inevitable and people are in denial about that, as well as in denial about disability-as-part-of-life in general...
I'm not in the health industry, but in my work I'm surrounded by apparently-healthy young people. As their instructor, I often hear about what lies beneath. One person has ADHD, another is coping with rheumatoid arthritis, yet another has Crohn's disease, someone else comes down with mono, and a legion of them struggle with various mental health issues. Yet the norm on campus is what's visible. And all you can see - except for the occasional leg cast - is "healthy," vigorous youth. It's possible this is more pronounced at my university than most, because the campus is hilly and the accommodations for anyone who's mobility-impaired are a joke.

This silence and invisibility contribute to the denial Daisy mentions. So does our shared but repressed fear of mortality and decline.

There are also serious perils in looking "too healthy." Julie at Alas recounts how she can't wrap her own mind around the idea that her back pain is real, and this sabotages her ability to get the care she needs. Daisy points out that Julie's experience collides our expectation that if a person is young, attractive, middle-class, and educated, she ought to be healthy, too, just by definition.

Maybe most people with invisible disabilities aren't as hard on themselves as Julie appears to be, but they also can't always count on the recognition and help they need. When I had my chronic fatigue experience, my grad school advisers were wonderfully supportive, but some of the other people in my orbit really didn't get it. My then-boyfriend once accused me of using my illness manipulatively because I could find energy for some activities but not others. It was hard for him to understand that my energy level varied, and that I had to set priorities. (This was the beginning of the end for me and him.) A few fellow students expressed skepticism behind my back, which came back to me through the grad-school gossip tree: How could I really be sick? I didn't look sick! Was I just trying to get a break on my coursework? To my face, though, some of my comrades radiated pity; this group overlapped with the skeptics, weirdly enough.

This time around, I've encountered only warmth and support from family, friends, and colleagues. My husband took on some of my usual household tasks. My mom sent money and offered to come help if we needed her. Friends took care of the kids, often at short notice, and one of them babysat overnight so we could go to Cleveland. One colleague gave a lecture while I was away, and another was on call to cover my seminar. Yet another found money to pay a grader so I didn't have to deal with 90 midterms.

I'm sure it helps that I'm out of the grad-school hothouse with its petty resentments. More importantly, most of the adults in my life are now old enough to have some close-up experience with disability. Without their support, I don't know how I'd have made it through the past weeks.

But the precondition for all this help was that I had to make the invisible visible. I had to take the risk of making it public. I couldn't hide under the mask of normalcy. I had to give up the privilege of passing, however uncomfortable that made me. I'm so grateful that the people in my life all chose to make that radical phenomenological leap of faith - to believe in the reality of my reality, no matter how impossible it was for them to see it.

What would it take to transform our society so that invisible disability is always taken seriously - and that leap of faith is no longer even necessary?

11 comments:

DaisyDeadhead said...

About half my of emails are getting lost or mangled, so I hope you got the loooong one I sent you yesterday. (?)

Nightmarish computer problems. Something about firewalls and ZoneAlarm. ((refuses to think about it))

I got the wrist brace today and the doctor wrote me a note dictating that I officially wear it.

Now, I just have to DO it.

Reg said...

Since I'm totally blind, the idea of things being "visible" or "invisible" is interesting to me, beyond my tendency to make flipant remarks.
Blindness can be very visible, depending on what I'm doing, or trying to do, at the time. If you're born with it, as I was, it's just part of you, and most people in my position seem to come to the conclusion that it's better to devote as much energy as possible to making the most of life, rather than wasting it on trying to deny that you're blind..

Predictably, in my teens, not looking "blind" was a bit of an obsessive worry, and I still try not to be over-cautious in public, for fear that I might look too much like the sighted person's stereotype of the groping, rather menacing figure of Blind Pew in Treasure Island.

To come to my point eventually, if someone tells me they have a particular disability, I'm likely to believe them since their apparently "normal" appearance is not part of my world. All my visual experience is second hand, and I have to take a great deal on trust.

On behalf of the optimists, I have to say that this has worked pretty well so far. I'm certainly extremely glad that, through no virtue of mine, I'm unable to judge people by their appearance, and I'm rather perplexed by how much store others set by it.

Once people know you have a disability, visible or not, you'll get the whole range of reactions, from the concerned to the merely curious, to the very rare repulsion of "I don't do disability".
The same questions will keep coming up, and I feel it's encumbent on me to answer them, since all the PC talk in the world about promoting a "positive view of disability" won't amount to a cheque from a bankrupt if disabled people habitually behave like surly jerks.

Most people are very nice to me; in fact I'm sure I have a rosier view of humanity as a consequence of blindness than many sighted people.

I'm sorry if I've strayed too much from your original topic. I'm sure you will edit as necessary.


Reg

Sungold said...

Daisy, I can empathize with just ignoring computer problems and hoping they'll go away. My Microsoft Word program has had a glitch for the past 8 months or so, and I just can't make myself haul it in to the support office (and I realize I'm lucky to have local access to support through the university).

Anyway, I hope you can force yourself to wear the brace, at least when you're putting weight on your wrist. I had something similar for tendonitis about ten years ago and it was a nuisance but it did seem to help. It helped me avoid full blown carpal tunnel problems and I have very little pain in my wrists these days.

Reg - You can make flippant remarks to your heart's delight! And I promise I won't edit you unless you start hawking "male enhancement" products. (I do get occasional spam and that gets deleted.)

Different sorts of disabilities obviously require different coping strategies and workarounds. I wonder, too, if starting life with a particular condition results in less denial. It seems logical that you wouldn't miss something as much if you'd never had it, but since I haven't been in that position myself, I don't want to presume.

I'm glad you meet mostly with kindness. I don't know that you have an obligation to always be patient with people, although I see the political utility of it. When my husband was always getting questions, he was invariably patient with the kids, because they were just genuinely curious. When it came to adults, it really depended on the spirit in which they asked; they often made a lot of assumptions that he'd just suffered a minor injury, when in fact it was much more complicated. If the inquiry came from a stranger and seemed to reflect prurience or pity, he'd often brush off the question. And I think that was a reasonable response, too.

If you don't mind my asking, I'm curious about how you interface with the computer. Do you have a program that reads the words aloud? Or how does that work?

Reg said...

Sungold, your presumption is both logical and, in my experience, correct.

Being old enough to have gone to special schools for the blind from the age of 5, it seems that there's a cut off point somewhere around puberty where the fear of blindness begins to triumph over the "just get on with it" adaptive impulse.

As to the computer interface, I use screen reading software that can render screen output via speech or Braille. there are various available. Mine is called Window-Eyes. More information, (honestly not hawking) from
http://www.gwmicro.com
in case you, or anyone else, happens to be interested.

You're right; reaction to questions is skewed by their spirit and, sometimes unfortunately, by the mood you're in at the time. I remember, after a trying day, a train conductor said to me:
"I'll just get this pram off, and then I'll get you off". He wasn't thinking about my sense of being reduced to the status of luggage; we shouldn't have unrealistic expectations of people who are simply trying to do their jobs. So I don't think he deserved the shortness of the shrift he received from me on that occasion.
Reasonable or not, I would hate to be the one responsible for someone thinking that "blind people are so difficult".


Reg

John Pine said...

My friend Des was secretary of the Blind Association, next door to me in North Great George's Street, Dublin. When there was a blackout or a serious fog, Des, who was completely blind, used to lead poor confused sighted pedestrians across Dublin, safely to their destinations. They would have been completely lost without him. He also located a dead cat (very pertinent to this blog) which lay above the plaster between the rafters and made the whole Blind Association building unbearably smelly - nobody else had a clue where the smell was coming from. "It's just THERE!" said Des, tapping on the ceiling with his stick: sure enough, when the ceiling was cut open with a saw, the cat was exactly where Des had pointed. All his senses apart from sight were extremely alert.

So disabilities can make people indubitably superior to the rest of us: I don't need to list the triumphs of Helen Keller, Stephen Hawking, Christy Brown ... or of great blind writers such as Milton, Joyce (half blind - 'Do you hear what I am seeing?') Surdas and Homer - or Beethoven who triumphed, again in the face of the very sense that he was losing. Those who don't give in can, by focussing intensely on the senses and intelligence they have left, climb to much higher achievements than the majority who take for granted their underdeveloped gifts.

Heather Munro Prescott said...

I think the first step in getting society to take invisible (and visible) disability seriously is to recognize that this is a societal issue, not one of individual coping and "overcoming." I also admire your bravery for talking about your invisible disability on your blog. I haven't done so on my (at least not overtly) because mine -- bipolar disorder -- partly because students read it and partly because the disorder comes with such a big social stigma. Anyway, your post has made me think more seriously about coming out. Thanks.

Sungold said...

Reg, it sounds to me like you're more gracious toward people than they sometimes deserve. This is one of the really tough things about standing out as "other" in any way: the assumption that you somehow serve as a representative of a whole group. Thanks so much for answering my questions, and I sure hope I didn't make you feel like a token or spokesman in any way!

It's very cool that screen reading software has progressed to the point where you can use it for reading Web pages. I'd think that the technical challenges must be greater when text is not neatly laid out in lines and columns. That'll give me incentive to keep my spelling errors to a minimum. :-)

John, I have no doubt that some people are spurred to develop new and different capacities. I think that so much depends on individual circumstances. For instance, if a person suddenly becomes physically disabled *and* they are depressed about it, they may find it terribly difficult to muster motivation for physical therapy.

Heather, I absolutely agree that disability is *always* relative to social expectations and norms. If I were surrounded by family who could take over much of my childcare responsibilities, and if I only worked half-time, the past two months would have been much more manageable. Much of what we call "disability" could just as easily be considered a mismatch between what society demands and what one's body/mind can do.

As for students: A few of mine read my blog, and if they do, they already know more about me than the probably need to know! I had to be open about this illness in my capstone class, because I was afraid my cognitive impairment was showing. I didn't say anything to my large lecture class, though I did talk to a few students in the class who I knew well through other channels (mostly because they'd already taken a class with me).

Somehow I thought you *had* come out about your disability on your blog - if only because I somehow knew about it, and I didn't think we'd discussed it face to face! I do think it's harder to be open about any condition that's stigmatized, and unfortunately I don't think bipolar disorder has shed all its stigma just yet. I felt weird enough telling my students that I wasn't able to think straight - after all, thinking well is sort of in our job description. I'm not sure it's a matter of bravery so much as judging the circumstances and deciding which course will be more costly for myself. I needed some help and accommodations, because trying to fake my way through everything would've been just impossible. In your case, the question is which course feels right to you; there's truly no obligation or merit in "coming out" about a disability for its own sake.

hesperia said...

When my mother's balance became bad, she was advised to use a walker. It took her ages to use it, even though it helped and her stubborness in refusing it frustrated me.

When I first had CFS, my balance was terrible and I often became faint. A walker was advised for me. It sat in my hallway for weeks. I couldn't bring myself to use it.

When I finally did, I realized that part of the difficulty was that I felt pitied by people. There I was, a fairly young woman, staggering around with a walker. How tragic. I felt vulnerable, not embarassed. We're all vulnerable but we don't walk around with that awareness every moment. The walker made me aware of it every moment, until I got used to it.

Another thing that interested me about that experience was the difference in how various people treated me. Most people were polite and rushed to open doors for me. But a good many people rushed to get in front of me so they wouldn't be slowed down I assumed, sometimes nearly knocking me over in the process.

One disadvantage of invisible disability is that it's difficult to get some people to believe it's there. That's ok sometimes but other times, we need that extra assistance or understanding , though not pity, and we get the opposite.

Sungold said...

Hesperia, I'm sorry it's take me a while to respond to this. One of the problems of fatigue is that it's hard to keep up with my blog - I have to do it when I've got a little energy left from my non-virtual responsibilities.

I didn't realize your CFS was that bad. I can totally understand why you'd be loathe to "mark" yourself by using the walker. I'm pretty sure I would have reacted the same. I'd better keep that in mind as I deal with my parents growing older! (My dad really ought to get his hearing checked but so far refuses.)

That awareness of vulnerability is a tricky thing. If we can sustain it at a low simmer, we can experience a lot of gratitude for our relative good health. But as soon as that awareness comes into the foreground, fear can take over. I'm sort of on the cusp between those two states right now.

Your experience of kindness versus rudeness is somewhat similar to the reactions I got with CFS, I think, though in my case nothing was visible. My fellow students who reacted badly may have been partly motivated by competition; there was a lot of petty politics even before I got sick, and expressing pity or doubt may be the mind-game equivalent to pushing in front of a person with a walker.

On your last point, I completely agree. Seeing is too often believing, when it comes to disability.

Heather Munro Prescott said...

Looking through old entries, I see that I have blogged about this although not recently. It certainly isn't something I would put on my Facebook profile!

Sungold said...

I think it makes a difference, too, that you're not blogging under a pseudonym. The fact that my blog entries won't pop up when my real name is googled does give me a bit more latitude, I think.

As for Facebook - I haven't mentioned my illness there, but then again, I only update my "status" line there about once a year.