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 --"
"-- 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.