Moving Right Along

See, it's really all about the possibilities.

Today is both Love Thursday and Blogging Against Disablism Day 2008.  I find myself with an embarrassment of riches, topic-wise.  So many things, oddly, relate to both!  It may not be clear how this can be true.  But "disablism" is prejudice against people with disabilities, while love, of course, has little to do with any such thing and must combat disablism or any other unkind prejudice by its very nature.

There are so many topics I could have discussed just for BADD '08.  I thought about blogging about my own personal winter of disability, how often, unlike in years previous, I actually thought of myself as a person with a disability and what I did about it.  Sometimes the disability was in me.  Sometimes, on the other hand, it was more the "social model of disability" I was battling.  Perhaps, I thought, I would show you what it looks like when a town properly and dutifully installs ramped curb cuts at every crosswalk but then doesn't maintain them as vigilantly as the streets when it snows, not even at the height of the holiday shopping season, not even three blocks away from the main library.  (Click to enlarge for full sense of daunting.)

Then I thought I would amuse you with my experiences this winter using local parking reserved for the disabled.  For example, if you are as big a fan of Ms. AmpuT as I am, perhaps you remember this lovely sign, which is in fact posted here on the west side of my undeniably delightful town.  It and its identical twin grace two spaces in the parking lot for my favorite local bakery and café.

However, the other day I noticed something funny.  Across the parking lot, in front of the clever design house Swing, are two more spaces (three when it snows and the yellow lane demarcations are obscured) reserved for people with disabilities, and they look from a distance as though they bear the exact same signage.

On closer inspection, though, it is clear that though they once might have been identical, they are no longer.

That's a lot of reserved parking, and it is wonderful to see.  But yes, on this side of the parking lot only, someone has gone to the trouble to paint over the words "Don't cry if towed and fined."  My true love and I laugh about this and wonder why it is so.  Ironically, while I often see vehicles bearing no special permit parking in these spaces ("for just a minute while I [fill in the blank]," no doubt),  including one very nice Mercedes I'm still looking to photograph in the act, I never ever see anyone who shouldn't park in spaces marked by the signs with the original wording intact.  Go figure.

But here's the thing.  While all of this makes funny fodder for the purpose of opening conversations about disablism, it is hard to say what it has to do with love.   True, as we have discussed previously,  a genuinely loving culture cares for and protects everyone in it, or at least tries.  However, I strongly feel that a personal practice of love and compassion is most constructive when it not only allows us to see injustice or unfairness or simple absurdity and argue for better, but also when it allows us to see something that is already right and share it with others, or at least to share a vision of something that can be right, all on its own, even if it's just a terribly small thing.

And that's how I hit on what I want to talk about today, Love Thursday and also Blogging Against Disablism Day 2008:  just a small possibility.

Awhile back, esteemed correspondent Elizabeth McClung raved a bit about the perfection of badminton as a wheelchair sport and encouraged others to pick it up.  Continuing a theme, her readers began a discussion of other sports a wide spectrum of able-bodied and disabled people could enjoy together.  Inevitably, even though it is not the kind of team sport Elizabeth meant to discuss but more an individual practice, ever adaptable yoga was mentioned.  And then I mentioned tai chi.

I suggested to Elizabeth's esteemed correspondent LilWatcherGirl, who had described herself in comments as an "EDS-er" (person with Ehlers Danlos Syndrome) with proprioception issues and dyslexia, that she might want to look into it.  And later, I wondered if this had been presumptuous.  What the hell do I know about either tai chi or EDS?  That's right!  Absolutely nothing!

Among his many other fine attributes, however, my true love just happens to be a tai chi student and teacher.  He teaches privately, and also through a continuing program at the Emerson Umbrella for the Arts, in the dance studio there almost every Saturday morning from September into May.

We have had many discussions about yoga and tai chi, comparing and contrasting them.  I don't really view yoga as a sport, precisely, but contrary to the belief of many, tai chi is a real, live martial art, not just a woo-woo New Age movement practice.  One of the things yoga and tai chi have in common is that they are about energy, about channeling it and maximizing it through the body and the mind.  Another thing they have in common is the diversity of practitioners, and the diversity of teaching styles.

I think I have mentioned in comments here before that, although it is eminently adaptable, and although you can even see on page 77 of the January/February 2006 issue of Yoga Journal a photograph of the much respected yogi Sri B.K.S. Iyengar assisting a female transfemoral amputee such as myself with a Warrior Pose at a conference in Colorado, it is nevertheless very difficult to find yoga instructors who are willing to take on people with discernible physical disabilities.  Some of this is fear of liability if we are injured while in class, because another big part of this is that most teachers really don't know what to do with us.  I've also read and heard of yogis explaining that you can't really get real yoga unless you have all your limbs in good working order.

As the English say, bollocks.

Now, look.  I am not a Yogi.  I am an adaptive yoga practitioner.  I am also not Hindu and don't speak Sanskrit.  I am not trying to get to Nirvana from this incarnation; I don't even believe in god(s).  So I am not going to argue with anyone whether or not it is possible for me to be missing a leg and also become a "real" Yogi, because I think it's a stupid, pointless argument.  Yoga or yoga-derived practices of mind and body are things I have pursued to make myself stronger and freer.

In our extensive discussions, I have told my true love all about all of this.  And guess what?  These reasons I study Yoga?  These are also some major reasons (besides also, for example, being able to take down an attacker in a dark alley) that people pursue study of various martial arts, including tai chi.  And this is why my true love is always, always, always trying to recruit people to tai chi specifically, especially people with various physical infirmities.

My true love is convinced that tai chi is the antidote to a wide range of complaints!  Flat feet?  Take tai chi!  Aching back?  Again, tai chi is the answer!  Chronic headaches?  Fibromyalgia?  Arthritis? Cancer?  Tai chi, tai chi, tai chi, tai chi!  Okay, not the answer.  My true love is not stupid or insensitive.  He just thinks tai chi can do you a lot of good, no matter who you are, and I must concede that medical studies increasingly bear out his point.

(Well, they're starting to.  My true love wishes to point out that he is as yet unaware of any studies linking tai chi to health benefits for cancer patients or people with flat feet.)

He's serious in his belief, and he spends a lot of time thinking about this.  Last time we were in my prosthetist's waiting room, we were even talking about how he could teach tai chi to amputees.  I had to stand up to demonstrate the different ways that lower-limb amputees use knees both organic and mechanical and balance between them, different from whole-bodied people, I mean.  "Ah, I see," he said, and then the wheels began whirring in his head, visibly, almost audibly, and I went back to reading my book and absentmindedly dripping iced coffee all over my T-shirt.

Bear in mind that my true love does not have any amputated students, nor have any amputees yet contacted him about lessons.  He was just thinking about the possibilities.

So that day when I actually made so bold as to suggest tai chi as a possible physical outlet even for an "EDS-er," and then immediately had doubts about whether or not I should have done that, what could be more natural than to ask my true love directly?

I told him what I'd done, and of my doubts.  "So, what do you think?  Was I telling the truth?  Could a wheelchair user get something out of tai chi?  How 'bout someone with dystonia, cerebral palsy, paralysis?  I mean, I know they aren't going to become martial arts masters, like, Jackie Chan level or whatever, but do you think it would actually do them some good?"

"Sure!"  He said this without hesitation.  "You know, most of my students aren't going to get to that level.  For that matter, neither am I," he added with a little laugh.  "It's practically impossible for a person starting as an adult to really become a true master.  You have to start when you're really little, like they do in Chen Village [where tai chi originated] and practice all day, every day, for years.  But what difference does it make?  You can still get something out of it."

"So how 'bout you personally?  Would you teach a person with disabilities?"

"Sure!  I'll teach anyone who shows up!"

"Anyone?"

"Yeah!  Why not?"

"Well, what if they can't do much?"

"I'll teach 'em whatever they can learn.  'Cause that's what it's about, you know, doing what you can do, not worrying about whatever levels you're never going to reach."

"So what exactly would be the point of someone who was maybe barely mobile studying tai chi?  What could this person expect to get out of it?"

He replied -- and I asked him to write it down for me today, because this other conversation took place a whole brain surgery ago and I just couldn't remember exactly what he said -- "That's a good point.  Taiji is a whole body movement.  You use everything, the arms, the rib cage, the abdomen, the hips and the legs.  If you couldn't move [anything at all], it's not the right thing for you.  However, if you can breathe, and move even just your shoulders, it can help strengthen what you have.  Everything else is bonus."

So.  You "heard" him, right here.  My true love said he will teach tai chi to anyone who shows up, no matter what their physical condition might be, though he does feel that you should be able to at least breathe and move your shoulders in order to feel the benefit.  (To sign up for classes, which are ending for the season very soon but will start up again in the fall, contact Emerson Umbrella for the Arts or e-mail me privately and I will forward your information.)

This, obviously, is the opposite of disablism.  This is also another of the many faces of love.  This one is actually two faces in one:  passionate love for a particular sport or practice and also that generous love for other people that causes us to wish everyone maximum opportunities, to believe in the existence of possibilities and to desire to help make them realities, even if we don't know what they are yet, and to act on that desire in our everyday lives just as a matter of course.

I just wanted to point that out.  Sure, I also have complaints and lectures and all kinds of snarky ridicule to deliver on all kinds of related topics at some other point in the future, but look:  here is one tiny thing that's good, one teacher who gets it -- and I'll bet there are others.  (There must be others.  Please feel free to talk about any you know in comments, and to provide links where available.)

And that, my friends, is my contribution for today.  I know it's a steaming pile of disorganized rambling, and I apologize for that, but my weak excuses are that I am very tired and also that I started out with way too many ideas.  If you've gotten this far, thank you, and happy Love Thursday, but also happy BADD '08.  Now I'm off to read what others have written to celebrate the day on both counts.

The Disablist Within

So, just for the record, I am quite sure that the reason I did not get the job as Office Assistant at the Local Arts Organization That Shall Remain Nameless had nothing to do with disability.  I just want to make that very clear before we get started.

However, when I think about it, I realize that the interview itself had a certain amount to do with disablism.  I wouldn't say I was badly treated during my interview, not at all, and anyway, even if I was, I can't honestly say that other people did it to me any more than I did it to myself.

So let me tell you what happened.

First, you should know that I burned out on office work in about 1985, but kept doing office work until 1998, and that at my core, I really have no desire to work in an office ever, ever again, even though I may be required to do so at some point just to stock the fridge and pay the rent.  Needing to do stuff like that on a reliable basis is the whole reason I kept working office jobs long after my ability to tolerate them cheerfully.  I am an Artist, of course, but I also type 125 words a minute.  Frankly, it's a lot easier for someone with my skills and lack of formal credentials to get into a law firm as a temp secretary than it is to get hung in a gallery, not to mention sold by a gallery, not to mention sold often enough by a gallery that the 40% commission it earns -- and takes off the top, naturally -- won't be too big a bite to allow me to turn the lights on at night or keep a fridge in my house at all.

I probably didn't need to explain all that.  But it is important that you know that I did not apply for the job at the Local Arts Organization That Shall Remain Nameless because I had any passionate desire to answer their phones and type into their database, and that my lack of said passionate desire was probably patently obvious even though I am by nature an energetic and enthusiastic person.  You must realize also that I had a lot of competition for this painless little part-time public interest job, here in this suburb full of soccer moms with advanced degrees (some in the arts) and college students living at home three suburbs outside of Boston.  And in spite of my native ebullience, I have never been able to fake interest in anything.  Plus, I shared things in the interview such as the fact that one of the main reasons I was looking for a job at all at that particular time was that grief over my recently deceased cat was tearing me to pieces and I needed a distraction desperately, and also that I thought they didn't need to worry about their newsletter looking too "professional" (that is, expensive, as in a poor expenditure of donated funds), 'cause I'd seen it and it didn't.  Then there's the fact that I agonized so long over whether to apply at all that I actually ended up applying late.  I hadn't read the ad closely, you see, and didn't know I'd passed the deadline, and when you consider that, you have to admit it was very nice of them to interview me at all.

Really, when you consider all of that, you must admit that it's no surprise whatsoever that instead of hiring me they hired a young (20-something), pretty, bouncy, full-time theater arts student with straight, unstained teeth and a nickname who lives with her parents two suburbs out from this one and has her own car.  No surprise whatsoever.  I can't say I'd have done differently in their shoes.

But let me tell you about the interview.  And the disablism.

The first time I rode my beautiful, beautiful blue tricycle anywhere other than back and forth on my own quiet little street to practice was when I went to drop off my résumé to apply for the job at the Local Arts Organization That Shall Remain Nameless.  The second time was when I went in for my interview.  An obvious attraction of this job for me had been its proximity to my home, an easily walkable and even more easily trikeable distance of about half a mile.

I was feeling good.  I was feeling strong.  I was following up on a great opportunity to get out of the house every day, contribute to my community, and pick up a little cash that would contribute to my household and take stress off my true love, all without taking so much time and energy out of each week that it would interfere with my art career.  I had made an idiot of myself at various intersections, trying to figure out how to get my foot in the right place to start my trike up before the cars around me lost patience and drove into me just as I got my act together, but I had also smiled and waved and rung my sweet little bell at several of my townspeople, including a tall elderly gentleman who smiled and called, "That looks like fun!" as I whizzed by, huffing and panting only ever so slightly as I replied "It is!"  I was feeling surpassingly clever because I had figured out a way to use my bike lock to secure things without injuring them in the big white basket under my butt.  I was feeling strong and capable, if slightly out of breath, as I parked my bike, locked it up, and then climbed the stairs into the building housing the Local Arts Organization That Shall Remain Nameless.

Tuck those stairs in mind for later.

I got to the office red-faced and winded, but still feeling good, and strong.  I sat to wait for my interview.  At some point, they were ready for me, and I stood and walked toward them.  And then the inevitable question, from a woman I'd already met a week before when I'd dropped off my résumé:

"What did you do to your leg?"

And suddenly I remembered that I walk funny.  With the triking and the climbing and the generally going about my day learning things, adapting, and working on making myself stronger, I'd forgotten that I do that.

I often forget.

Fortunately, there's always someone to remind me.

Of course, it's an innocent question, and people only mean to be kind.  (I understand that I am expected to forgive the intrusion of other people's expectations and projections because they only mean to be kind.  It has been made clear to me.)  I was wearing long pants, as I usually am in late October, so the lady asking assumed, naturally, that I had maybe sprained or broken something, that I was experiencing some temporary misery for which she could offer sympathy.  She was making conversation and being solicitous at the same time. 

We all do this.  Honestly, I do it, too, sometimes, though I have learned to limit it to conversations with people I already know.  I have learned through recovering from amputation -- and yes, I really have recovered and people really do recover even though they might still walk funny or not at all afterward, and might continue to walk funny or not at all forever -- that you shouldn't ask strangers why they're limping because they might do it all the time and yet, strangely, not really think about it all the time the way every single stranger who sees them for the first time will.  Equally strangely, maybe they don't want to be made to think about it because maybe the reasons they limp are a little upsetting and have nothing to do with this minute you're sharing.  Or should have nothing to do with it.  Because they're irrelevant.  Oh, and possibly upsetting.

I have come to feel that none of us, as a rule, seeming to know better until something happens to us that makes us (or someone we love) walk funny or not at all for the rest of our own lives is a manifestation of disablism on a deep, cultural level.  Of course, we used to teach each other things like this as part of every child's basic training in manners, at least every middle-class child's, but then the '60s happened, manners were deemed part of the Establishment, man, and a real classist drag, and this kind of training was largely jettisoned.

I cannot say that's entirely a bad thing, partly because old-fashioned manners often covered ugly truths, were skillfully used to create a façade with which to cover often meritless disdain and to separate people on artificial bases.  However, manners at their best, basic courtesies and considerations the best brought up among us still try to maintain, like opening doors for each other instead of letting doors we pass through smack whoever's behind us in the face, like simply being aware of other people and giving them room and time to go about their own business comfortably in space we share, or like apologizing when we can't, these are how we let other people know they are important to us, or that we realize they should be.  These are how we acknowledge to other people our understanding that they, too, are human and have feelings worthy of consideration.

Now, while the fact that manners, where they still exist, have been reduced from elaborate to functional in daily life overall is not necessarily terrible, the increasing evidence I see that the goal of skillful and considerate interaction with possibly, putatively, or obviously disabled people has been completely eliminated from whatever training we still give each other in ordinary etiquette appalls me.  And it's disablism, because leaving that out of how we teach each other how to treat each other essentially translates to leaving disabled people out of the superset of humans we think of as deserving of consideration as a matter of course, as a basic, unquestionable, completely-not-special matter of course.  Yet it seems to me that not many people share my horror at this.  It seems to me that few people feel terribly pressured to do anything about it because, you know, most of the time, even when they're being intrusive, people really do mean to be kind.  And besides, I am reminded whenever I bring this up among friends and other congenial types that most people out in the world aren't disabled.  ("Yet," I have been known to interject.)  So it doesn't really come up all that often.  So therefore, it's really not that big a deal and I should just chill.

And you must understand that I am not angry with the woman at the Local Arts Organization That Shall Remain Nameless who asked me why I was limping, because even though by doing so she reminded me that I walk funny at a moment when I really didn't need to be reminded, put me into a state of self-consciousness, and set an awkward tone for the rest of my interview, I do know that she meant no harm.  And I do know that she couldn't have known her probably innocently motivated question would have this deflating effect on me because like most Americans our age and younger she probably was never taught to think about such things.  I am angry that I am constantly asked this question and others by strangers because they don't know better or even think they should have to when it comes right down to it.  I am angry that disabled people matter this little in our culture.  And I'm sad about it.  And tired of it.

But wait; there's more.  I haven't even gotten to the interview yet.

***

Let's skip ahead.  So I'm in the interview now, and I'm conversing quite calmly and happily with the Head Administrator in Charge whose assistant I will be if I get the job, and she is telling me the history of the Local Arts Organization That Shall Remain Nameless.

The Local Arts Organization That Shall Remain Nameless is named for the building in which it is housed.  This building is wheelchair accessible -- partly, anyway, barely.  Three stories tall, it used to be a public school built in the heyday of Art Deco, and it is tiled and lovely, full of big, high-ceilinged rooms which are rented out as studio space to local artists in many media, including a famous author and his husband the famous illustrator who does all his book covers.  The building's facilities include a dance studio and a performance space in which the general public are invited to attend all kinds of interesting events, for which they pay admission.  Sometimes different groups will rent this space for private parties and charity benefits.

To enter the building, most people go up a step or two, in the front door, into the foyer, and up a flight of stairs to the second floor, which is actually the main floor.  If you are in a wheelchair and wish to attend a performance, you have to enter using the ramp in the back, but first make sure someone has gone to unlock the back door for you.

I don't believe there are consistently working elevators inside the building, if any at all, but I could be wrong.

The building is in disrepair because it is a public interest undertaking and there is never enough money for public interest undertakings.  The ceiling over the seating in the performance space, for example, is spectacularly stained.  The Local Arts Organization That Shall Remain Nameless receives funding from, as I recall, the Town and possibly the Commonwealth.  I do not remember whether it receives federal funding, but I doubt it.  The Head Administrator told me -- and apparently this is a matter of public record, having been discussed in Town Meetings openly -- that the Town decided to donate this building for an arts center instead of using it for expanded town offices in order to avoid paying what it would have had to pay in order to make it fully accessible to disabled people.

Hmm, I thought, not very impressed with my beloved, adorable little town at that moment.  That's not right.  But --

"Oh," I said aloud.  "Well, that makes sense.  And it turned out to be a good thing, didn't it, because now we have this lovely arts center."

***

Let's skip ahead a little more.  My tale is almost done.

At some point in the interview, the Head Administrator said, "I don't even know if I'm allowed to ask you this --"

"Okay."

"-- but, um, if you came to work here, would we need to do anything special for you?  Give you any kind of special equipment or anything?"

I don't think you are allowed to ask me that, I thought.  But I have no idea how to say so and refuse to answer without appearing to be Potentially Big Trouble.  So --

"I don't know if you are allowed to ask that question either, quite frankly.  However, I will just tell you that no, you wouldn't.  I have worked very hard to be as normal as possible.  I can do pretty much everything now that I ever could, and I have worked very hard to make this true, because that's just something I want for myself.  The only thing I have to warn you is that I'm not a good candidate for this job if part of my duties will be to dash off here and there around the building, up and down the stairs, running errands.  The reason why is that I just don't move very fast."

I was assured this would not be required of me, that they in fact needed someone to stay in the office and do things like answer phones so that the Administrators could dash about running errands.

Later, when I was being vetted by the two co-Administrators, including the one who'd asked me what I'd done to my leg, I was sitting between them in a broken chair, and suddenly I had just been there too long.  I realized my posture was such that I was sort of choking on my own double chin and that I had to sit up straight or suffocate, and at the same time I was suddenly very nervous and very tired.  I also had nothing to say to these women, and they had no questions prepared; they were just supposed to get a feeling for me, to see if we could all work together.  Just for something to say, I started blurting out reasons not to hire me, including that they shouldn't hire me if they needed someone who could dart around the building quickly running errands.

So you see, I still don't think disability had anything to do with why I didn't get the job, and I do think that should be pretty obvious to anyone.

But I do think disablism was all over that interview, cultural, institutional, and personal, and I do think that a good part of it, the whole of the personal part, was my own.

***

I don't, as I've said, really think about myself as a disabled person.  I can't.  I have it in my head that a disabled person -- like a poor person, even though I have almost no money of my own and am relying on someone else to support my life right now -- is always going to be someone else.

A disabled person needs more than I do.  A disabled person can't do the things that I do.  For me to call myself disabled -- or handicapped, or even just challenged -- would be insulting to genuinely disabled people.  So I firmly believe on some core level.

Okay, I walk funny.  Okay, I spend a lot of time in my home, an apartment up a flight of stairs with nary a ramp nor elevator, in a wheelchair not walking at all.  Okay, without a prosthetic that fits, and good enough medical coverage to pay for such a thing whenever what I have breaks or needs to be adjusted, I would never walk at all.  And my running sucks, and I probably won't ever be able to master riding a unicycle or driving an unadapted car again.

But I just can't do it.  I just can't call myself "disabled."  The best I can do is "putatively disabled."

I think about a certain Commissioner in Missouri and am dead certain I know what disablism is.  It's easy for me to ridicule that man, even to hate him a little for being so arrogant as to think he knows what he would do if he became disabled and that he has the right to physically enforce his projected reality upon other people in complete disregard for law and decency.  Then I think about myself, about being raised by people just like him, who taught me not to treat disabled people like weirdos, freaks or anything other than fellow humans worthy of my best manners but also who talked just like him about self-reliance and how other people -- poor people, racially diverse people, disabled people -- need to exercise more of it, and I wonder how different I am.

It's easy for me to deplore disablism as obvious as that Commissioner's.  But when I think about fighting it on a personal level, I don't even know where to start.  Missing two thirds of my right leg, I can't even call myself "disabled"!  I worry on one hand about being perceived as some kind of cultural appropriator since I am so very able, since I've made a point of becoming so very able, partly because I need my own personal freedom like I need food and water, and partly because I can't bear for other people to think of me as vulnerable, because I can't bear to be at the mercy of other people.  And I've done a good job, because I don't really feel all that disabled.

Furthermore, I worry about taking away resources from the truly disabled, whoever they might be.  I don't use my handicapped parking placard because I remember what it was like being in a wheelchair, and because there are so very many perfectly able-bodied a$$holes in the world who already make use of limited handicapped parking and feel justified in doing so because they're "just running in for a minute," and who complain that there are too many handicapped spaces and that they never see anybody using them.  But I don't need to use a wheelchair in public anymore now that I have a working prosthetic.  All I need is this one piece of equipment, and as long as nobody expects ballerina grace or whippet speed from me, I'm pretty much set.

But then I feel guilty and untrue to myself by not identifying myself as disabled.  You saw how I acted in that interview, not just the crazy parts that had nothing to do with disability, like talking about my cat or strangling on my own fat, but when we were talking about how my town behaved in the face of the ADA and how little this Local Arts Organization That Shall Remain Nameless has done since its founding to make itself genuinely a resource for the whole community, including the disabled parts.  I wasn't going to get that job anyway, I now realize.  I was in no state to win it, and the competition was insurmountable.  I could have said something.  It wouldn't have cost me anything at all to be a little bit of Trouble, and I could have let my community -- my sub-community, my part of the community that I spend so much time distancing myself from for my own sake and also, I truly believe, for its sake -- be heard by people of power in this town.

We are invisible in this town.  I am the only one I ever see.  I know there must be others.  There have to be others.  But I am the only one I ever see, and I am loud, and I need to do better for the others.

I don't need to use my handicapped placard.  I do need to speak to power, to make it see me, to make it see that I am one among many and that we are here.   And that we deserve consideration, because we are a real part of all the people who are here, and that other people's lives are poorer and narrower if we are excluded.

But then I get very tired thinking about that.  Just like the people on the street who don't have enough social training not to ask me what I did to my leg even though it's none of their business and my desire not to think about it and to just get on with my life should be presumed and trump their curiosity, I don't know where to begin.  I don't even know how to tell someone s/he doesn't have the right to ask me an illegal question.  I don't even know how to think of myself as someone who has the right to say something like that.

***

This is the last part, and it's brief.  I don't know how much money it would cost to make the building housing the Local Arts Organization That Shall Remain Nameless fully accessible, or even more accessible, or more inclusively accessible, to add maybe a small ramp on just one side of the one or two initial front steps and an electric wheelchair lift to that first wide, industrial-style staircase that takes you to the main floor (just like the Parish Hall over in Memorial Square has in its foyer, though every time I've seen it it's been locked up), just so that people in wheelchairs could come in the front door to attend performances and open studios and exhibits just on that floor, just like everybody else.

I wonder if it would cost as much as building the new playing fields will cost.

Even though I keep reading in the local paper about how the population of school-age children in this town has been on a decline in size for quite some time, one of the most hotly contested issues, the one that gave rise to more front lawn signs on both sides all over town than any other prefatory to the annual town meeting held last week, was whether to tear down part of Walden Woods abutting the Concord Carlisle High School and construct new, synthetic turf playing fields.  The people in favor of building the playing fields won.  The fields will cost $1,500,000, and the town is going to borrow the money to pay for them.

I wonder why my town never thought it was important to get a loan to make more significant accessibility improvements to the Local Arts Organization That Shall Remain Nameless, even something as half-assed and simple as what I've proposed above which is still better than a ramp in the back to a door that has to be unlocked in advance like a special event, or why said Organization has never tried to get a grant to do something like this itself.

I just know I won't be asking.  I don't have time; I don't have strength; I can't even make up my mind to own this as my battle, even though I know that inclusiveness serves everyone.  The monumental nature of institutional disablism compounded with the depth and breadth of cultural disablism presents a smooth wall of disapproving people annoyed at being bothered by a minority they are likely all bound to join someday, if they are lucky to live long enough.

My personal disablism is another issue.  Figuring out where I fit into the spectrum of disability is just the first step in finding the strength within myself to battle it, but I'm finding it's a doozy.

This posting is meant to help other people see disablism at all, of course, to recognize it in themselves and wherever else it crops up in ordinary life, sometimes quite subtly, because that's the first step in fighting it everywhere.  But it's also for me, to help me see it in my mind and in my actions, to make progress along what is just another recovery step, a step that feels like a precipitous ledge even though it's only made of acceptance and understanding.  Thank you for accompanying me on the journey.

The "G" Word

I have been talking, in writing and not, online and off, about my ongoing "leg pimping project" for a couple of years.  Now, apparently, Garry Trudeau has plagiarized me!  I'm so flattered!  I can't think of anyone by whom I'd rather be plagiarized.

Just kidding.  Trudeau has not really plagiarized me (though I really would be flattered -- you know, right before I asked for money).  Trudeau's amputee character B.D., who, incidentally, just happened to lose his cartoon leg in cartoon Iraq right around the same time I was recuperating from giving up one of my real ones in a clean and spiffy real-life hospital, has recently gone in search of someone to "pimp [his] gimp." However, neither Trudeau nor I, middle-aged white folk both, invented the expression "pimp," and certainly not its current meaning synonymous with what our generation meant when we used to say "trick out." 

In fact, neither of us is the first person to apply it in this type of context.  It's been out there awhile.  Synchronicity.  Furthermore, when B.D. actually says, "Pimp my gimp," Trudeau specifically proves he is not plagiarizing me by using another word neither of us coined, which also just happens to be a word I would never, ever use, not even in jest, one I'm not even comfortable using in direct quotation, with quotation marks around it and everything.*

Yes, the "G" word, that's the one I mean.

In spite of the fact that I respect and even love a little (in a distinctly non-creepy, non-stalkerish way, of course)  many fine bloggers who use this word sort of blithely, sort of defiantly, always self-referentially, I cannot use it at all.  I can't call someone this affectionately or joshingly.  I can't even call someone this if it's part of his or her own self-chosen identity, online or off.  Because of how I was raised, in my head it's just like the "N" word, only for people with disabilities and pan-racial in coverage.  I was told never, never, never to use this word, just as I was told never, never, never to use that "N" word.  Never, never, never.  The "G" word is mean and cruel and evil-intentioned, I was told. 

This conditioning has proven unbreakable.

When you look in the dictionary, chances are you will be told that no one knows from where exactly the "G" word derives.  I no longer own a copy of the OED (bad story involving flooding and mold), and can't afford an online subscription, but a little web research points to the possibility of a low German origin in a similar word meaning "hooked."  This sort of supports what I was told by my parents..

My parents were both Jewish.  My father's mother was German and spoke several languages, including German.  My mother's father was Russian and spoke three or four languages, including Yiddish, which I understand to be an amalgamation of German, Hebrew, and other stuff.  So when my parents taught me that the "G" word was a vile Yiddish epithet, a slur used only by bigots, I believed them. 

Though both my parents were of a scholarly bent, and although both came from backgrounds which lead me to believe they might have known what they were talking about with respect to this word, it is true that neither was a linguistic expert.  However, Webster's and Dictionary.com place the word as showing up in America sometime around the 1920s.  This also tends, in my mind, to support the idea that it might have had a Yiddish source, because of the influx of Yiddish-speaking Jewish immigrants (among them several of my own antecedents) in the early part of the 20th century, folks likely to have brought this word with them along with less offensive words such as "tchotchke" and "schmaltz," but also other words one should use with care such as "putz" or "schmuck."

So, I don't know for sure if my parents were correct.  And I'm not going to tell other people how to use this word.  If it's a power word for you, I'm not going to tell you not to throw it wherever it makes you feel strong.  Furthermore, I will refrain from pointing out how I wince when someone temporarily injured with a sprained ankle or whatnot uses this word self-referentially, unable to avoid feeling the same way in such an instance that I feel when a white person gets a deep suntan and then calls him/herself "black" or a "[N-word]."  I will just say that this is what I was taught, that the "G" word is a cruel slur and not a cute little nickname. 

I cannot refrain from pointing out, however, that when I have not heard this word used self-referentially, I have always heard it used disdainfully, as a way of belittling and devaluing the person to whom it was being applied.  Describing, yes, but diminishing at the same time  And that kind of experience also tends to support what I was taught.

So? 

So nothing, really.  I'm just getting this off my chest. 

Of course, "pimping" can mean some pretty unattractive things, too.  But that's different!  Right?  Right?

_____

(Hat-tip to Blue Lily for pointing out the Doonesbury series, which really was funny, especially the part about payment.  Hat-tip also to Lady Bracknell for linking to Clear Canes.  They really do have an intriguing line, not just including the sparkly and the shiny-shiny, but all kinds of other flashy options to make your stick-using experience more stylish without busting your budget.)
_____

*Ask that pope guy how good quotation marks are at neutralizing the offensive power of words. (back up)

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)