Tag Archives: invisible disabilities

“What can I do?”

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

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.

Pain and Public Spaces

The singer Martha Wainwright has a song entitled “Bleeding All Over You” that begins with the following set of lyrics:

There are days
when the cage doesn’t
seem to open very wide at all

I know it sounds negative, but some days, I can definitely relate. Maybe it’s the fact that I pass fairly regularly as able-bodied–at least in public spaces–or maybe it’s my failure at passing on my worst days that makes me relate. As much as I hate to rely upon the old trope of the person-with-disability as trapped by her own unruly body, it, like many tropes, has a sliver of truth to it.

When I am in public, I often fear that other people–more able-bodied people–can “spot” my disability. On a purely surface level, this makes no sense. Part of what makes passing such an interesting topic is the fact that, on some level, the individual who passes can hide something and look as if she or he is a part of another group, despite some (invisible) evidence that would suggest otherwise. I realize also that not everyone has the ability to pass–that passing, in itself, is a privilege. The ability to appear to be something that one is not (often as a member of a more privileged group) is not something that absolutely everyone has.

Today, I sat in a restaurant and ate a light lunch very, very slowly because my right hand was unable to hold the fork without considerable muscle pain in my tendons and wrist. This sort of thing happens rarely, but when it does, I get nervous. I become nervous because I think that my fellow diners, or students, or whomever, can pick up on my not-immediately-obvious physical difference(s) from something that is only slightly “off.” Even using a term like “off” is problematic; it implies that there is something wrong, that the person who needs to take time to do some of the things that others may take for granted needs to be fixed, somehow; that, or she needs to “fix” herself (by minimizing/masking her pain or ability or dis-ability) so that she may fit in and continue to pass.

So, are my restrained grimaces due to pain–when I am in public spaces, that is– restrained because I, deep down, want to continue passing? Is it because I would be embarrassed to show my pain around strangers? Is it out of rather ridiculous consideration(s) of the “comfort” level of strangers (ie: the social assumption that one should never make people uncomfortable, even if one is in pain)? Does a “stiff upper lip,” so to speak, actually do anyone a favor? I’d argue that the whole “keep your pain to yourself” thing might arise from a very deep fear of individuals with disabilities, but that’s probably best saved for another post.

Originally posted at Ham.Blog

Who hates to hear they look great?

(Originally posted July 2007 at three rivers fog)

Over half of the chronically ill*:

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”

“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”

Absolutely.

This is a sore spot for many with “invisible” conditions: that is, disabilities or impairments that aren’t visible to the eye, that don’t cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don’t realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.

These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.

And because they are invisible, they can be harder to understand. People can’t see what’s wrong with you, so they assume there isn’t anything wrong (and we’re back to that white male able-bodied heterosexual default “person” again). Even presented with evidence, many people still insist that there can’t be anything really wrong. As people who have battled depression surely find familiar, you’re expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.

And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. “You look great!” is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person’s complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren’t really understood.

I’ll grant that I don’t tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:

* “If you stopped thinking about it and went back to work…” (12.42%)

ARGH!

I’ve been told to “think positive” my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or… I would go back to school for half a day and then take off my three-days-without-a-doctor’s-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.

I then pushed myself through college, thinking that if I could just keep at it I could be “normal.” After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.

I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn’t and gave me a C- because though I did good work, I didn’t do enough work to earn the grade. I still can’t decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn’t able to finish it out. The pain catches up to me.

Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn’t walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot (“I’m fifty years old, honey, I hurt too.” “…!!!! [splutter]”).

No. I can’t be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can’t take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I’m in trouble). I can’t get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I’m out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can’t take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of “commitment” to boot. My husband works full time and I not at all, and he still does half the housework. I’ve learned to ask for help when I’m struggling instead of stubbornly insisting I can do it myself. Etc. I’ve had to accept all these things. It’s a heavy hit to your pride, trust me.

Which reminds me of the last one that bugs the shit out of me:

3. You’re so lucky to get to stay in bed all day.

Oh, honey. I’d give anything to trade you…

*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new “alternative” treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I’d say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)

Stop and think: invisible access for invisible disabilities

[This post was originally posted at Hoyden About Town on May 4, 2007.]

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense! Continue reading Stop and think: invisible access for invisible disabilities