Wait! Come back!

I can't stand up from sitting without assistance anymore. It may seem like a small thing, maybe one people take for granted being able to do (or not being able to do). But it's the latest thing in a litany, a timeline of function lost. Ehlers-Danlos is not technically degenerative (the genetic mutation is stable), but virtually all patients see a deterioration in pain or function, so colloquially it's appropriate to call it a progressive disease, and it's certainly my lived experience of the disability.

Perhaps it's because I haven't yet put the years of experience into this disability, but the progressive, unpredictable nature of it makes my primary emotional interaction with it one of fear: what is it going to take next? When? How far will it go? When I can't do something, even just because of an injury like a sprain, I get obsessed with wondering whether I'll be able to do it again, or whether that inability represents the beginning of its loss. I get my hopes up every time something comes back (I can walk without assistance again--I couldn't a week ago!). I cry bitterly whenever those hopes are dashed. It's a constant frustration, never being able to depend on my body and hating it for its little embarrasments: the spilling, the tripping, the dropping of things.

I feel guilty about experiencing my own disability this way, when I argue so strongly against its portrayal as a roundly negative experience. I don't want to betray my politics through my negative experience of disability. I wonder: where do stories of more negative disability experiences belong in a progressive, disability-aware narrative?

Dear Professor

Usually you know me; I'm only rarely just another face in the lecture hall. I raise my hand, I ask questions, and I try quite hard in your class. Usually, then, you like me.

But that's no excuse. When I give you my accommodation letter, you should understand that the accommodations I will be receiving are non-optional. There's an entire office of friendly-but-insistent staff ready to back me up. I am entitled to my digital text. I'm entitled to a word processor on essay exams I'm entitled to a notetaker. I will even give you a whole 'nother letter that details exactly what to do. Please just do it.

Because I don't want to be in the position where I have to push you. I don't want to risk a letter of recommendation for grad school because I had DSP get on your case to get me a notetaker and that makes you think I'm obnoxious. I don't want to do worse in your class because I couldn't get notes without getting up in front of the class and begging someone to take notes for me. These are not things an able-bodied student has to worry about, and it sucks.

And the funny thing about all this is: if you give me these accommodations, I can continue to be the student you liked so much. With a word processor, I can get my ideas onto paper without cutting myself short because my hand seized up painfully after a couple of sentences. With a notetaker, I can concetrate on your material in lecture and participate more actively. And with my digital text, I don't have to triage which heavy textbooks to bring lest I be exhausted and in too much pain to actually get through lecture. This things make me the best student I can be, and as a teacher, surely you want that.

Indeed, what I don't understand is your apathy and reluctance. I have outlined in writing exactly what you should do, and yet you can't be arsed to read it long enough to follow very simple instructions. I can't even trust you to read aloud exactly what it says in the italics on the page, because you just arbitrarily stop halfway through. Can it really be that your privilege so blinds you to the needs of students that you expect a beatific smile from the poor little cripple girl just for not-even-doing-all-of your job?

Well, you are the same professor whose office is up two flights of stairs with no elevator in sight. So I'm gonna go with "yes."

Iran's "Crippling" Sanctions

I just saw a headline about "Sanctions that Would Really Cripple Iran." On the same page as how Verizon, according to a commenter, "cripples" headsets.

Do people just not get the ableism memo? My fellow copyeditors--shape up already! If you stopped those kind of words going through, maybe:
1) Writers would have to be more creative than simple ableist slurs
2) Other people, like politicians and bloggers, would be less likely to use them

Media shapes us and our use of language. The less a word is used in a given context in the media, the less likely it will be used in common parlance. The word "cripple" itself is rarely used outright to refer to PWDs, but "crippling sanctions" and tech "crippleware" continue. Copyeditors?

Cut. It. Out.

On Hair

It's amazing how much of a difference little things can make to one's everyday life. An accommodation here, a challenge there--it's those things that add up to whether I'm cranky at the end of the day, exhausted, or energetic and happy to stay up for hours and chat. Sometimes things that on most days suck, on a particularly day will be wonderful.

For instance, I was just brushing my hair. I've been growing it out for 3 years or so now, and it's gotten quite long--almost halfway down my back. I take careful care of it--washing it as it needs it, never blow-drying it, and never dying it, and it's pretty happy and healthy. I never wear it down because, while thick, wavy hair looks wonderful when worn down for 15 minutes for a jury or even for a short evening dinner, if I try to wear it down all day, after a couple of hours it looks like something the cat dragged in. So I wear it up, or in a braid.

As much as I love my hair, it's a lot of work for someone with shoulder pain--I have to wash it, brush it (which can take a LONG time), and, most days right now, braid it. When I braid it, I'll let my shoulders get into wonky, hypermobile positions without even noticing it. There are days where it hurts too much to do anything with it, and I'll just throw it into the World's Messiest Bun to avoid even looking at it. The bun, of course, promptly falls out. Thanks, hair.

But having long hair provides tremendous pleasure sometimes too. There's a physical, gentle pleasure in brushing out long hair that short-haired people will never know. It's why brushing someone's hair can be soothing, and why many women have fond memories of their mothers or sisters brushing or putting up their hair (my father helped me brush mine and put it up in the morning before school, and my mother often braided it for me before I went to sleep). Alternately, there can be a fierce pain and an aversion to letting someone do, or even touch your hair. Many people had traumatic experiences getting their hair done because it "misbehaved"--read: failed to conform to European beauty standards.

There are tremendous cultural pressures around hair. It can signify attitudes about conformity (think about the "long-haired" hippies). It serves as a gender and sexual signal; in the Orthodox Jewish community I'll someday likely be a part of, married women cover their hair. Will I have to do that? Will I be willing to? People even use moral language to talk about hair, often with racial undertones: what does it mean to have "bad hair" in many communities, other than a failure to look like "nice" white-people hair?

Hair is where the intersection of may groups meet: gender, race, ability, class, age. It's such a shame that it's used as a weapon in the culture wars when the stuff itself is neutral, or even nice. When the pleasure of simple brushing or combing or washing has been forgotten in a consumer-driven culture that tells you that you need THIS product to put in your hair, or THIS is the new style, quick, change your old one. Even if you're aware of this, even if you see the bullshit, it's hard to ignore.

But every so often, run your fingers over it and remember: it's a part of your body. It's beautiful because it's yours. And it's there for you to enjoy.

Advocating while shy

A lot of the time (when I have energy/spoons/etc) I can be a pretty outgoing person; I'm chatty and engaged. But in key ways, I'm very shy: I hate speaking in foreign languages, even when I'm semi- or completely fluent in them, I hate ordering food at restaurants when I have to make special requests, I hate asking people for help or directions. But most of all, I hate putting my foot down and saying "No, I can't do this."

That's a pretty bad trait for someone with a disability, since PWDs need to advocate for themselves fare more than do able-bodied people. Often, when I'm with Boychik and something has to get done, like groceries and neither one of us can really do it (he's working, for instance, or tired, and I'm fatigued or in pain), sooner or later I hiss through my teeth, get up, and do it. Of course, there's hell to pay for it later, but it gets the job done at the time, and that's all that really seems to matter at the time.

But it's even worse with people who don't know. At this point, my disability is still invisible, and with great effort I can hide it. It takes a fair amount to push me to the point where I literally cannot move. I can do most things people do, but at a far higher cost.

If I go on two shopping trips in one day, particularly if one of them is a walkabout, I will be painfully fatigued by the end of the day. I can't run up and down from my loft because it's painful and exhausting. And if I don't tell someone that, they don't know and I'm stuck wearing myself out because I've deceived them with inappropriate expectations of my ability level.

At this point, given the very mild level of activity I've performed and the toll even that's taken on me, I don't know if I can do the things that the very active summer I planned when I was better requires. It's Day 3 of Simcha's Excellent Adventure, and I want to go home to Boychik, curl up, cry, and not move until August. If this is not nasty jet lag (and does jet lag come with hip pain?) I am desperately screwed.

My aunt is, all told, rather active: she goes to the gym, shops on foot, and walks her three giant dogs several times a day. And she is very happy to see me and wants me to do everything with her and gets quite disappointed when I beg off. But can I really go to the gym? Walk the dogs 4-6 times a day? In the strictest sense, "Can I make my body physically go through the motions?" maybe. Day after day, probably not. And it has pretty nasty consequences: doing so, even for one day, puts me in a terribly bad mood, impatient, fatigued, and near the verge of tears constantly. In the sense that actually gives a shit about my quality of life, the level of activity I'm attempting is absurd.

But as a woman, I feel socialized not to bother people, to please people by pushing myself beyond my abilities, and not to say that I can't do these things, especially when there are emotional consequences (like my aunt singing "Lonely! I'm so lonely!" every time she passes the window when she goes out with the dogs when I've refused). Boychik, with his male privilege, can say "No!" and tell me to do likewise, but it's taken very differently when he says it as opposed to when I say it, to the extent that I'm very, very reluctant to do so.

So why can't I just say "I'm disabled, I'm tired, please just let me rest for a while"? Mostly because I don't have the good sense to advocate for myself. At a certain point, disability has consequences, and either that's the consequence that I don't or can't do things or that I kill myself trying to do them. And I'm so scared of the disappointment, the passive-aggressive sighing, or the stupid questions that just go on and on and on (because of course you have a right to know about my body and everything that goes on with it, especially if you're family), that I prefer just not to say anything, and lie about it even when that doesn't work and I'm broken and exhausted. Better for them to think I'm lazy than, gasp, disabled.

This is part of the serious intersectional issues of disability and gender. While socialized females are told not to inconvenience others, disability is, in fact, and inconvenience, and it has to inconvenience someone. And there's only a degree to which you can, in fact, suck it up and deal with it. With fatigue-related issues, however, that's pretty much what you're told to do.

And you know what, guys? Jet lag makes that soooooo much worse.

Trying to Relate to Disability (and different ways to fail)

In which our bendy friend indulges in some educationing:

I have Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome (JHS or EDS; it's basically interchangeable). It is a genetic disease, often degenerative, which causes joint instability. My joints don't like to stay in their sockets, basically. EDS is associated with chronic joint and limb pain, but not just when joints actively sublux or dislocate: many EDS patients experience their chronic pain from microinjuries, too small to see on an MRI but more than enough to hurt, as a result of damage caused by repeated injuries from joint instability. So joint instability causes pain, which causes fatigue, which causes crankiness (which causes blogging). Pretty simple, right?

Fibromyalgia is another chronic pain condition, whose etiology is not quite as well-known as that of EDS. Symptoms of pain and fatigue are pretty much all they have in common: one is genetic, one isn't; one has pain caused by repeated joint trauma, one doesn't; one allows me to do double-jointed tricks that cause even my flexible dancer-friend to avert her eyes with disgust, one fails to bestow that incomparable blessing.

So why, whenever I tell people that I have EDS and explain that it results in chronic pain, do people always respond with something about their friend who has fibromyalgia? It's like if I told someone "I have cancer" and they respond with "Yeah, my friend has AIDS" and expecting me to relate to that. Cancer≠AIDS, right? But hey, they're both bad diseases that people have walks for, so totally an appropriate response!

(And why is it always fibromyalgia, guys? Can't someone have a friend with Handigodou Syndrome or something?)

In all seriousness: I appreciate that my friends and acquaintances are trying to sympathize with my experience. There's a very sweet narrative implicit in it ("My friend has chronic pain, and s/he's still my friend; I'll be there to help you through this, too). I even understand that most able-bodied people don't have much experience with disability and thus feel awkward and without a traditional social script, so they just try the best they can. But let's just consider this one of those social faux pas that, committed once, you avoid in the future. Y'know, belching at a formal White House dinner. Or wearing Uggs in public.

Some bizarre ways of reacting and relating to my EDS:

I must have that too! Sometimes, to illustrate how hypermobility works, I'll demonstrate some of my "tricks;" show people my hypermobile joints or stretches that shouldn't be effortless on someone who hasn't purposely stretched in six years. Most, if not all, are also present in people who have benign hypermobility, or plain ol' "double-jointedness" (totally not a scientific term, folks). The idea is that I have that, but on crack: if my muscles aren't strong enough to keep a given joint stable, it will sublux because my ligaments are so loose that they're not going to keep it in place. It's also a genetic thing; a person without a propensity for joint laxity cannot, simply by stretching, get themselves into the same state I am in, for instance. Double-jointed people and others who rely on their flexibility can do some degree of damage through a similar mechanism, but this is my natural state. The fact that you, like I, can touch your thumb to your forearm does not mean that you are walking around with Joint Hypermobility Syndrome. It just means you're naturally flexible. If you had this, by definition, you'd know, since one of the major criteria of Joint Hypermobility Syndrome is pain. No hurty? No problem.

You're really flexible? I used to be too! I did gymnastics in elementary school. Wonderful. I did too. So nice that we share something in common that has nothing to do with my disability. Again, people try to relate to my painful joint disease by talking about completely harmless activities that they did. Flexibility itself is not why I'm in pain; subluxations and dislocations and the damage therefrom are.

Can you do this? *Does some stretch*
Actually, no. As much as I would love to be Cursed with Awesome and have a disability superpower like Daredevil, it's really more like being Blessed with Suck. EDS does not automatically enable you to become a contortionist and join Cirque du Soleil. Like I said, I haven't been on a stretching regimen in years because I'm not doing dance anymore or high school PE, so while my ligaments are congenitally loose, my muscles aren't trained to stretch, so any stretch that involves significant muscle flexibility is likely more difficult than just doing weird tricks with my fingers, where flexibility is more about ligaments than muscles. I'm a 20 year-old woman, so I am still respectably flexible like most women my age, but not to the freakish degree you'd expect from a hypermobility disorder. Again, flexibility is not the problem. It's not exactly a side-effect, but there's more to Joint Hypermobility Syndrome than that.

As an interesting note, I'm actually not supposed to do a lot of stretching. It could potentially weaken my ligaments even more. So no yoga for me.

...Can stem cells help?
Not unless they can replace all of the defective collagen in my entire body AND alter my genome so I never produce another defective cell. That's like using stem cells to make your brown hair blonde. Moving on.

I totally feel you! Sometimes when I've been running 5k in bad shoes, my knees hurt!
You might want to get some better shoes, first off, but this is not like that. Your joint pain is not like my joint pain. Your tiredness at the end of a long day is not like the tiredness of someone with chronic fatigue syndrome/myalgic encephalitis. Normal people get these things, and we use the same words to describe them (there was a wonderful post here about this issue), but they're just on a different scale. Comparing ordinary or small-scale problems to disabling ones and should be treated accordingly. You should not necessarily expect that someone with a disability can push through pain or fatigue the way you can as an able-bodied person. They might pay for it later, or simply not be able to do it at all.

__________________________

I understand that you, as an able-bodied person, might not be able to relate to exactly what I'm going through, as natural as that desire is among people. I honestly don't expect you to; after all, you're able-bodied and I'm not. So the solution is simple: don't try to relate if you can't. It will save us all some awkwardness.