So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at FWD.)

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.