Uh..."disabled"?

As with so many other posts here, it's taken me a really long time to write this, as I've had lots going on.  This goes all the way back to July 26.

Dropping in on Bonnie, I discovered that she had been mentioned in the Disability Studies, Temple University, "Disability Blogs Roundup #12."  (Yay, Bonnie!  And yay, Penny, for recognizing that Bonnie is so yay-able!)  Bonnie was a trifle nonplussed, and explained why.  I went over there to see what had been said about her, and which post had been picked, and discovered that one of mine had been included, too.  I was flattered.  And I was nonplussed, too, but for a whole other reason than Bonnie was.

See, I just don't think of myself as "disabled."  As mentioned elsewhere on this blog, I will freely admit that I once was disabled*, but I now consider myself repaired and moving on.  In fact, a large part of this blog's purpose is to share my exploits as I re-able myself and otherwise get on with my life pretty much the same as I always meant to, and to help other people do the same thing their own way and/or share information on how, if they want to.  Yes, getting on with it all often means adapting to a lot of changes.  But, see, I don't think "changed" and "disabled" necessarily mean the same thing, even when the changes are profound.

It cannot be said enough, so I'm just going to go ahead and throw it in here, before I go further:  I am not insulted at being called "disabled."  Just surprised.  Almost astounded.

Naturally, I immediately started thinking, for the first time to any real depth, about what it does mean to be disabled, and whether the passel of things for which I haven't figured out work-arounds yet themselves define me as a disabled person.  I don't know how to drive a car that hasn't been adapted for my use.**  I don't know if I can make pedal boats work, and they were once something I loved.  (My sister and I used to find them in the course of all kinds of adventures, and we always felt we had to ride them at every opportunity.  Now I don't know how to complete a full pedal rotation with only one foot that can push, unless there are toe clips like I had installed on the tricycle I just bought.)  I think I will break my neck and maybe also get my face wiped off onto pavement if I ever decide to re-learn how to use a unicycle, even though the last time I taught myself how to do it a little bit, way back when I was a two-legged child, every time I started to fall I'd just hop off.  It's all stuff like that, nothing major.  Do these trifling changes really render me "disabled"?

Again, understand that I'm not offended or anything, you know, not like I am when some stranger assumes that my prosthetic leg is all there is to me and lets me know it, or when somebody, either a stranger or someone who really should be able to do better, just can't see past it to the rest of me.  I'm just wondering what "disabled" really is, where we draw the line, whether it matters how we see ourselves at all, if there really is self-determination at all, even, once you cross that boundary into the land of not enough pieces to make you "normal," whether there ever is, regardless, or whether we rely on each other completely for permission to seize our own freedom and how consistently that permission might rely on adjectives applied by third parties we may never meet.  (I can only assume I'm something like the bazillionth putatively disabled person to head down this trail, too, so sorry if it's boring to hear about.)

And I also got to thinking about other people I consider genuinely and permanently disabled strictly because their physical potential is so much more limited than mine.  I wonder how many of them would be offended that I think of them that way.  I wondered how many other people would be offended that I don't think of them this way.  And I wondered at what point they (you?) start(ed) calling themselves "disabled," and whether they've ever really felt comfortable with that description.

Any thoughts?  Anybody?

When I asked him, startled, "Am I disabled?" my true love replied, unhesitatingly, "Yes."

"Really???"

He nodded in such a way that told me his answer was, "Oh, hell yes."

"Wow.  I'm very surprised and disappointed to discover that you see me that way."

"Look, I don't," he backtracked.  "Not really.  But consider," and here I paraphrase, because this conversation did take place over two months ago, "consider the plight of the poor, beleaguered public policy maker.  Faced with the task of categorizing all people with special physical needs under one umbrella term, what word can he use?   'Disabled' for him does not mean what it means to you.  It just means this big pool of people and all their diverse needs."

"But I don't have special physical needs."

"Okay."

"I've had them in the past, but I don't have them now."

"But it's not about you personally."

"But apparently it is."

"Whatever.  I'm just saying."

"Uh...okay."

So "disabled" is an umbrella word.  A word for public policy, a word about the social welfare needs of a large group who might not be such a minority when taken altogether.  A word about group needs and considerations, not individual ability or individual struggles.

Right.

It's a cliché to say something like this, I know, but do we need a different word? 

Used to be "handicapped" was the word everybody used, and some still do.  I think of it kind of the way they use it in golf, but it picked up some bad connotations when applied to variations in human physical shape or potential.  "Disabled," though, is how we describe machines that have been turned off, or prevented from ever functioning again, like the one remaining GM electric car in Southern California.  My physical experience as a human being has been permanently altered, and maybe yours has, too.  But have you been switched off?  I haven't.  Have you been stopped from progressing?  I haven't had to face that, either, though it does seem some people sorely want to try sometimes, and all in the name of my own "good" (harumph!).

Now, this will seem like a digression, but please bear with me. 

For part of the time during which I was genuinely disabled -- which for me meant between functional right legs (between owning them; get your head out of the gutter), totally unable to get around on my own, and not really strong enough to try what with getting over being deathly ill and having massive surgery, relying completely on other people to participate in anything that took place outside my home, and relying on other people substantially to assist me physically and teach me how to function all over again on my own in my own home -- for part of that time, I had a "handicapped" parking placard.  (I still have it; I just don't use it.)

In Massachusetts, you can't apply for such a thing, not even a temporary one, in advance of actually being "handicapped," not even in advance of an event which you know will happen and when, and which you know will cripple you, at least temporarily.  You have to wait until the actual event has already transpired.  Then you have to get a doctor to fill out the appropriate form and send it in for you.  Then you have to wait six weeks to receive your placard or special plate.

As early as mid- or late September 2003, I knew I was going to have my leg off in late October 2003.  I knew the exact date, the time to within an hour.  I had to wait until my first post-surgical exam after my discharge from the hospital where I'd had the amputation performed to get my form signed.  It was late December before I received the placard.  (And get this:  Every few years (I forget how many), I have to go to the Registry of Motor Vehicles and present written proof from a doctor that I am still "disabled" in order to get that placard renewed.  Isn't that hilarious?  I guess they're afraid I'll continue to milk the system once the parthenogenesis kicks in.)

Now, as it happens, July 26 was the 16th anniversary of the Americans with Disabilities Act.  I only found this out because Penny mentioned it in her Disability Studies, Temple University, "Disability Blogs Roundup #12," which I only found out about because Bonnie was nonplussed enough to mention her inclusion in it in her blog.  Penny, though, promised to "festoon...the nearest placard parking space with crepe paper and balloons" in celebration of the anniversary, and asked others to let her know if they did anything creative in honor of the day.

Not seeing myself as disabled, having had to wait approximately half of my most recent period of actual disability to receive a special parking placard, not having ever been refused anything on the basis of disability, and though I am certainly very, very happy the Act was passed, I wonder how it relates to me, personally, now, today.  I was genuinely shocked to see my writing mentioned in a post that had anything to do with it.  Among so many other things, it made me wonder if the Act has more to do with me than I ever realized.  I wondered if other people thought of me as disabled and only put up with me at my job because of the Act, but never told me.  (I know some openly expressed through their actions their belief that I was disabled, but they were idiots, and exceptions.)  I wonder how much of my life I am only permitted to have because of the consciousness that went along with the process of passing and maintaining the Act, not to mention the law itself.  Every time somebody can't see my face for my leg, objectifies me, makes assumptions about my intelligence or even strength, attempts to infantilize me, gets all awkward and doesn't know what to do with him/herself around me, projects heroic fantasies upon me, etc., all because I'm wearing a mechanical limb, I do feel the loss of whatever "normal" person privilege (sort of like white privilege) I used to enjoy.  But I still don't feel disabled.  'Cause so far, I've been taught or able to figure out some way to do whatever the hell I want.  And this makes me, for all practical purposes, able.

Meanwhile, not realizing I'm "disabled," almost never even thinking about the ADA, now also wondering how much of my life happens the way it happens because other people see me as disabled and apply the ADA in their dealings with me (very self-conscious-making, that), and in any event totally ignorant until the evening of 7/26 that 7/26 was the 16th anniversary of the ADA, it's no wonder I didn't consciously plan any kind of celebration.  I did take that long walk and many, many photographs on 7/26, and I did create sort of a tutorial around some of them to help other people in my plight -- though I wasn't really thinking of it as a plight -- become more able.  I did spend the day being able myself, regardless of whatever facilities were or were not available to accommodate the peculiarities of my own physical situation, and thinking about how to spread the ability around to other people who might have more potential than they know.  And I thought deeply about why to bother.  So I do think I spent my day sort of tangentially in the spirit of the Act, and I suspect that at bottom I might spend every day celebrating it whether I know it or not by virtue of the fact that it has never, ever come up in my life (as far as I know) after I stopped using my own placard or a wheelchair in public because I'd been lucky enough, regardless of the Act, to have been fitted with new walking equipment that really, really works, and thus rendered able to "pass" (even though I do walk funny).  And I think that all might be the best celebration of it I could ever devise.

I suspect that every time we lead our lives right on through the potholes, and every time other people help us or let us -- not to feel good but just because that's how we're supposed to treat each other as humans, reflexively -- whether we realize they're doing it or not, I think that celebrates the Act, too.

And I must say I am grateful I can celebrate that way, grateful to all the people who came before me, learned stuff, shared their knowledge, and made my ability possible -- and still do. I'm grateful I am still free to define myself by what I do, and think, and feel.

And I'm grateful to all the other people out there who talk honestly about their own lives, good and bad, so that I don't have to make assumptions about them.

But here's a proposal:  Instead of calling each other/ourselves "disabled," how 'bout we tweak the language, the umbrella language, just one more time?  How 'bout we think of ourselves and each other, and name ourselves and each other, based not just on our needs but on our strengths?  We are not disabled or differently abled.  We are people who have adapted to the use of various technological gifts from others and inventions of our own in order to survive and even thrive in many ways.  We are different, but we are not to be switched off and kicked to the curb.  We are not finished.  We are tech-adapted, or better yet, tech-enabled.

I like the sound of that much better than "disabled."  What do you think?

_____

Extra Credit:

• So?  How often is disability something we decide about each other rather than something we understand ourselves to suffer?  (I don't know the answer.  I'm asking what you think.) 

• And which way do you think matters more, the way we see and name ourselves or how other people see and name us?

_____

*Actually, more than once before I've been wheelchair-bound by surgery or otherwise had my mobility curtailed by pain.

(back up)

**While researching what I might and might not be able to do after amputation, I ran across a device one could purchase and apply to any automobile -- even a standard transmission -- to temporarily convert it to a hand-controlled vehicle without permanently damaging or altering it, rendering it therefore highly suitable for a traveling right transfemoral amputee to bring along and use on a rental car.  However, it has disappeared off the web, as far as I can tell.  It did seem too good to be true, but I wonder if anyone else has ever seen anything like it, DOT approved and available to the general public.

(I will go into the adaptations I employ in order to drive my boyfriend's automatic transmission Subaru Forester in great detail in a future post.  Stay tuned.)

(back up)

Comments

[Penny]

Hi Sara! Thanks for the yays. I think your posts--and especially your 7/26 walk--exemplify the Neil Marcus line, "Disability is not a brave struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live." We like to celebrate that art and ingenuity at DS,TU.

In this post, you're also getting at the definition Rosemarie Garland Thomson uses in _Extraordinary Bodies_: "Disability is the attribution of corporeal deviance--not so much a property of bodies as a product of cultural rules about what bodies should be or do." When you took the walk, photographed it, and blogged it, you challenged those cultural rules--and that's always of interest to us at DS,TU.

Not all the posts we collect for the blog roundups (and soon, the disability blogs carnival) are by people who self-identify as disabled -- inclusion shouldn't imply that. Your posts, and the rest, were included because they work on the levels described above: they question cultural attributions of deviance, and they explore the art of living creatively in all the bodies and minds we've got.

[Sara]

HA HA HA -- I like "deviance" a lot better than "disability." But that's just because it's more familiar territory. (Some of us just never really fit in, even while we still had the advantage of "normal" body privilege.)

I don't like the word "disability" or "disabled" because no matter where each is used, those three little letters at the beginning imprison everyone to whom these words are applied to a perception of loss and limitation. It's true; some of us have lost stuff, some quite a bit. It's also true that there are limits to what each of us can achieve right now, right at this moment. But that's true of everyone. Everyone on the planet is always theoretically just one tiny technological or intellectual development away from being able to achieve more.

I know that constant calls to redefine and reshape official language can be tiresome. I would just like people to consider how things could be different if we framed the entire discussion from the perspective of a more positive nuance. How would your department be different if it were named "Tech-Enabled Living Studies"? How much easier might it be to enforce if the ADA were instead called something like the "Americans Requiring Technological Assistance Act (ARTAA)", allowing art to enter even the acronym?

People being people, including the venal, the ungenerous, and the lazy, it probably would not make much practical difference. But can you see how much more positive and integrative this kind of language is? Think how much less of an automatic lodestone we become in the subconscious minds of our fellow citizens when we are understood and recognized not by what we can't do and don't have, but by the possibilities of what we can all achieve together, "normals" and "deviants" alike.

Everything happens in increments. A word change here and there will not change the set-in-stone mindset of the selfish and shortsighted. But just as I wonder and think I might notice how, via passage of the ADA and similar movements, the injection into American consciousness and subconsciousness of the simple awareness that "disabled" people even have basic inalienable rights to begin with, that we are equal citizens under the law, let alone that we have value, I wonder how much more readily these concepts would spread if the words which form the delivery system were just a little less burdensome in nuance. I don't know the answer. I just wonder.

While I was writing all this, I kept thinking of my mother who lived with arthritis and eventually succumbed to bipolar disorder, but who never, ever thought of herself as "handicapped" or "disabled," and would have raised her cane against anyone else who would have tried to characterize her this way. You would have liked her, I think. She was awarded a prize by the Arthrities Foundation back in the '70s as a result of an article she wrote -- for some national women's magazine, I think; I can't remember -- in which she gave simple advice to other arthritis sufferers on how to make their own lives easier in tiny, everyday ways. She talked about simple things like choosing slip-on shoes over shoes with laces. These were Big Ideas back then. Deviant, almost. Or so I remember.

This woman walked with a cane and couldn't open a pickle jar, though her needlework and artwork, which physically hurt her to create, were something amazing, and she made herself walk every day, even on bad days. She endowed me with a "use it or lose it" consciousness which I still find useful. She also left me a perspective which might explain my own inability to think of myself as "disabled," per se. "Good heavens," she used to say upon observing someone she perceived as worse off than herself. "Some people have real problems."

Anyway, cheers, Penny. I think your blog is awesome, and I hope you take this discussion (or my long-winded rambling, depending on your viewpoint) only as proof that it really does make people think. Keep up the great work.

[Penny]

Nah, can't go for the "Americans Requiring Technological Assistance Act". While some people with some disabilities benefit a great deal from technological fixes, others don't, and some actively reject tech "fixes" (think Deaf Culture and cochlear implants, for one example; or the various intrusive medical interventions inflicted on disabled people in institutions and elsewhere). The big-picture goal is to make a society where the policies and programs and places are accessible to a more people. Technology can be part of reaching that goal, but it wouldn't address some kinds of marginalization and exclusion. The movement will always need a word that embraces folks across the various ways bodies and minds can function outside the narrow socially-defined norms--otherwise, we'd have fragmentation, and some important common interests would be ill-served.

[Sara]

I understand what you're saying. Of course, I consider "technology" to include even very simple things like canes, handrails, and inclines. But I can see how other people would not take that meaning and would feel excluded or jump to exclusionary conclusions. And yes, where none of even this very simple stuff is available or useful to them, people still must be understood to have value and rights, and public policy needs which are worthy of being addressed.

I guess what it boils down to is that wish that we could think of an inclusive word that expressed needs which must be met but which was not so very all about what's missing or broken or, to the eyes of non-deviants, wrong.

Stumped again! (Sorry. Punnitis.)

[Sara]

Ow! Ow! I'm having a minor epiphany! Dang, that smarts!

So I'm sitting in front of the washing machine searching my laundry for stains that need treating and thinking about deaf people (your fault, Penny), and suddenly I understand something I didn't understand two months ago or even yesterday.

I have never known a deaf person who considered him/herself disabled. Of course not! What a ridiculous notion -- ridiculous, at least, if we use the deafness alone to drop someone into this category. The person who is deaf has not been disabled, shut off like those GM cars to which I alluded above, but a body part or system which would otherwise serve the function of facilitating hearing has. And this made me realize the distinction between "being disabled" and "having a disability." And suddenly I appreciated something I hadn't earlier.

It's not called the "Disabled Americans Act." It's called the "Americans with Disabilities Act." And now that makes sense to me. I can say I have a "disability." A body part of mine has been switched off, and though this fact hasn't stopped me, and though I've chosen to replace the dead part functionally with other means, the fact is, yeah, it's gone, disabled permanently. I just won't ever feel right calling myself -- or anyone else, frankly -- "disabled," not before the final switching off of the entire system.

So, by George, I think I get it. Or part of it. Such a tiny thing it is, too, but it really does make a difference.