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12 Steps to Institutional Neglect and Compounded Violation

I feel like there should be a trigger warning for “just so generally horrible it makes me lose what little faith in humanity I had left,” but I will go with this: This story concerns sexual abuse of an intellectually disabled middle-schooler. If you can keep reading without cringing, you’re a stronger person than I.

The entire thing is tragic and awful, but here’s an overview:

A southwestern Missouri school district has denied accusations in a federal lawsuit that officials failed to protect a middle-school girl from being raped, calling the lawsuit “frivolous” and saying the girl “neglected to use reasonable means to protect herself.”

And the details, according to the lawsuit (still pending):

1. The girl was sexually harassed and assaulted throughout her seventh-grade year and raped on the premises of the school in spring of 2009. She went to the school for help and protection. They called her mother in, but only to report that the girl had made the allegations and was probably lying.

2. Nothing happened to the rapist.

3. The girl was repeatedly called in by school officials so they could badger and intimidate her until she recanted. Then they called her mother again. “See? Liar. Told you.” (Her psychological profile in her school file described her as passive and conflict-averse. She said she finally just told the school what they wanted to hear.)

4. Nothing happened to the rapist. The school never reported anything to anyone.

5. The girl was forced to write a letter of apology to the boy who raped her.

Read More…Read More…

Jailing women who try to commit suicide

Bei Bei Shuai tried to kill herself with rat poison last year. She survived. But she was pregnant, and her fetus died. Now she’s being charged with murder and attempted feticide.

Shaui’s downward spiral began in late December, when her boyfriend blindsided her. It turned out the man who had fathered her baby and promised to marry her, and with whom she’d recently opened a restaurant, wasn’t going to follow through on any of his promises. He was married to someone else—not divorced, as he’d told Shuai—with two children. And perhaps lacking vision or a spine, he decided he didn’t want to give up his estranged family to start a new one. He left Shuai, sobbing on her knees, alone in a parking lot.

When Shuai looked up, she saw a hardware store, walked in and bought rat poison. She went back to her apartment in Indianapolis and ate the pellets. But she was surprised when they didn’t immediately kill her. Frustrated, she got back in her car and drove northeast to Anderson, where several close friends live, though she didn’t go to any of them. Instead, she went to a gas station, where by chance, Sui Mak’s husband, Bing, spotted her. She was puffy-eyed, pale, out of sorts. He convinced her to drive straight to their home and have a meal. Finally, she confided about the rat poison. They coaxed her into the car and drove her to the hospital.

Shuai spent Christmas on the maternity ward at Methodist hospital in Indianapolis. On New Year’s Eve, doctors decided a cesarean was necessary. The Maks’ 14-year-old daughter named the baby girl: Angel. Everyone expected mother and child to make a full recovery, but after the delivery, Angel started to decline. The hospital asked Shuai to sign forms allowing blood transfusions and procedures. On January 2nd, doctors asked her permission to take the newborn off life support. At that point, law enforcement was notified.

The prospect of her baby’s death led to a second breakdown, according to Mak’s testimony, which was relayed by Shuai’s attorney, Linda Pence. “She was fainting and crying, fainting and crying, drifting in and out of sleep. She was completely unstable.” But that evening, with the help of her friends, she decided to take Angel off life support. Shuai “held the baby for five hours straight until she died in her arms,” said Pence. ‘The whole time Bei Bei was crying and screaming, ‘Why couldn’t I die? Why did they have to take my baby?’”

Shuai spent the next month on the hospital’s psych ward, recovering and grieving. By March, she had resumed running her restaurant. That’s when the state locked her up.

Prosecuting a pregnant woman for attempted suicide is an extreme interpretation of the law, and puts pregnant women in a special class — men and women who aren’t pregnant are never prosecuted for trying to kill themselves.

“Indiana does not prosecute people for attempted suicide,” said Indiana University law professor, medical doctor, and former state representative David Orentlicher. “So now this prosecutor is saying, ‘If you’re suicidal, you better not get pregnant, because you might get thrown in jail.’ That to me is a very important constitutional problem.”

And it’s a very scary proposition, though it isn’t new. Women have been prosecuted for child abuse or feticide when they miscarry; pregnant women who are addicted to drugs have been charged with trafficking drugs to minors; and pregnant women have been forced to deliver via cesarean section under court order. Some states also require doctors to report if a pregnant woman is taking drugs — a law which sounds reasonable on its face, until you think through the logical outcome: Women who are addicted to drugs just won’t seek medical care, which means they won’t get treatment for their addictions and won’t get basic pre-natal care. Cases like this one present the same issue for women with mental health problems — if you’re pregnant and contemplating suicide but talking to a doctor means you might get thrown in jail, you aren’t going to seek help.

It seems obvious that the endgame of this fetus movement is to recriminalize abortion, and these are the grounds on which pro-choice groups oppose such laws. But Paltrow argues that it’s a mistake to think in such narrow terms—that doing so “has ignored how these laws would be used to hurt pregnant women themselves.” Feticide laws are used “as a legal basis to deprive women of their personhood,” she said. “It’s not just reproductive rights. It’s not just the right to privacy. It gives the state authority to say that, while other human beings will have health problems that will be treated through a compassionate health-care response, pregnant women alone will be imprisoned without bail for not being able to guarantee the outcome of their pregnancy.”

All of which makes the state of Indiana—and Alabama, Texas, South Carolina, and some 30 other states with feticide laws—seem cruel if not unusual for imprisoning a woman who happened to be pregnant when she tried to kill herself. I posed this notion to Marion County’s Rimstidt, but he didn’t get it: “You mean the fact that she killed her baby with rat poison is cruel?”

Sending mentally ill people to Siberia

He’s really really old and has therefore earned the right to say what he thinks” doesn’t really apply when the old person in question suggests sending mentally ill people to Siberia so that they can die of exposure, and when he says that Hitler did something right. Especially when the person in question is a New Hampshire Republican state senator, whose views actually determine what programs — and what kind of people — receive state funding.

A disability services funding wishlist

Here in the state of New South Wales, Australia, we have an election coming up on 26 March, so help us all. The head of the state government, Premier Kristina Keneally of the Australian Labor Party, has pledged $30 million in disability services funding. She’s not going to be re-elected – I’ve never known an Australian government to be so widely despised – so it’s more of an exercise to maintain the last dregs of the public’s goodwill than anything. (If you’re wondering, her government has been plagued by so many scandals, ministerial resignations and schemes that fell through that it would be tempting to get out the popcorn and laugh were it not so serious.)

This is reminding me a bit of the federal election campaign last year, during which we had what I like to call “disability week”. Prime Minister Julia Gillard of Labor and Opposition Leader Tony Abbott of the Coalition both mysteriously started to promise money to disability services, after a few days of which the issue dropped off the radar again. It was all great and feel-good, but not much has actually been happening for disabled Australians. I’m a bit reluctant to take Australian politicians at their word about this sort of thing, having been around during the years in which John Howard (George W. Bush’s friend, remember him?) was Prime Minister and funding for services used by disabled schoolchildren was drastically cut. This was at heartbreaking expense to people I care about, and for the development of programs helping those kids engage with such frivolities as “learning to read” and “adding and subtracting”. Who ever would want to use those skills?

Yeah, I’m bitter.

If you had millions of dollars to put towards disability services in a given part of the world, what would you do with them? Here are some of the uses to which I’d like more funding directed where I live. I have a hard time imagining that these are the uses to which Keneally’s funding – which, as I’ve noted, won’t materialise anyway – would be directed, but a lady can dream. Hopefully the forthcoming Premier, Barry O’Farrell of the opposition, will step up.

1. Proper care: I wish that everyone in need would have access to proper care, and that there were strict measures in place so that disabled people wouldn’t be subject to abuse, neglect, and assault at the hands of those working in the care sector. That should not be happening, and it definitely shouldn’t be covered up by the system.

2. Fair treatment of disabled people in the criminal justice system: The existence of disabled people in Australian prisons has been largely ignored until recent years, with a lot of damage as a result. The conflation of disability and criminality and difficulties navigating the legal system while disabled are cherries on top of the lack-of-adequate-care pie. I’ve just written a piece on this subject for Global Comment, as a matter of fact.

3. Violence against women: I’d like some attention paid to domestic violence against disabled women and girls in particular. In spite of this being a population particularly subject to domestic violence, there aren’t a whole lot of accessible shelters, nor do government campaigns against violence against women discuss how disabled women and girls are affected. There is barely any data available on sexual violence against women and girls with disabilities, even though we know that the rates must be heinous. I can only find one report examining this, and that’s a 2008 report from the Australian Centre for the Study of Sexual Assault. It blows my mind that this extremely vulnerable group of women are largely ignored by so-called feminist or women’s groups, and that governments just don’t seem to care.

4. Education: Well, we know how I feel about this. There isn’t enough funding for teachers and aides. Disabled students are denied access to private schools. Australian policy on tackling literacy and numeracy issues has changed enough times in the past ten years to make one’s head spin. And if there’s anything worse than a bad educational program or policy, it’s an inconsistent one that doesn’t allow anyone to learn anything before it changes all around again. It’s ludicrously bad. I’d like a thorough inquiry as to the state of education for disabled students, and I’d like the government to take the results on board and address the issues. (Unlike that time in 2005 where there was a decent report into literacy, the resultant plans from which were scrapped after we got a new federal Education Minister. I’m bitter. Really, really bitter.)

What would you add?

In the mean time, there’s some good news: it looks like, after years of pushing, Australia’s disability support scheme is getting closer to a complete overhaul. Let’s hope!

On mental illness and crime

I’m hoping to write more about this in the coming days, but this article in Slate is a good look at the connection between mental illness and crime — that is, that people with mental illnesses are much more likely to be the victims of crime than the perpetrators, and our culture so thoroughly ties mental illness to criminality that we have created an environment of intellectual laziness when it comes to looking at the actual causes of crime.

Shortly after Jared Lee Loughner had been identified as the alleged shooter of Arizona Rep. Gabrielle Giffords, online sleuths turned up pages of rambling text and videos he had created. A wave of amateur diagnoses soon followed, most of which concluded that Loughner was not so much a political extremist as a man suffering from “paranoid schizophrenia.”

For many, the investigation will stop there. No need to explore personal motives, out-of-control grievances or distorted political anger. The mere mention of mental illness is explanation enough. This presumed link between psychiatric disorders and violence has become so entrenched in the public consciousness that the entire weight of the medical evidence is unable to shift it. Severe mental illness, on its own, is not an explanation for violence, but don’t expect to hear that from the media in the coming weeks.

Certainly, some people with mental illnesses do commit crimes — but that shouldn’t really surprise us, since people with mental illnesses are people, and some people commit crimes. I’m worried, though, that “he’s crazy” will end up being the easy card to pull in the particular case of the Arizona shooting, without recognizing that, mentally ill or not, Jared Loughner participated in the same society as the rest of us, and was undoubtedly influenced by the culture in which he lived — mental illness does not typically put one on an island all their own, totally unswayed and oblivious to everything around. We need to take a good look at the culture and sub-cultures we’ve built in the United States; “he’s crazy” is a cop-out, and it’s irresponsible, and it doesn’t alleviate us of our responsibilities.

Part of taking a good look at our culture is looking at how we treat those we’ve deemed insane or unstable or ill. It’s looking at how we don’t provide resources for all the people who need them, across the wide spectrum of mental and physical illness. It’s looking at how a punitive criminal justice system punishes the mentally ill. It’s looking at how a soundbite-driven media demonizes the mentally ill.

Pima County Sheriff Dupnik was on-point yesterday when he said that Arizona has become “a mecca for prejudice and bigotry.” But while we’re challenging the racist, anti-immigrant, pro-gun, anti-health-care, violent rhetoric that has come out of that state (and so many others), it’s also worth challenging the rhetoric and the assumptions we use when discussing mental illness, and especially the tenuous connection between mental illness and crime.

I’m hesitant to write about this topic on Feministe, since whenever mental illness is brought up we get a slew of ignorant and often hateful comments. So I’m putting this whole post on moderation, and will be deleting comments that demonize the mentally ill, or are bigoted towards people with mental illnesses. Because everything is being moderated, it may take a while for your comments to be approved. Thanks for your patience.

Not so much, no.

Reader April sent in an article from the LA Times (thanks!) called Medical treatment carries possible side effect of limiting homosexuality. You know this isn’t going to go well already, don’t you? It begins with this:

Each year in the United States, perhaps a few dozen pregnant women learn they are carrying a fetus at risk for a rare disorder known as congenital adrenal hyperplasia. The condition causes an accumulation of male hormones and can, in females, lead to genitals so masculinized that it can be difficult at birth to determine the baby’s gender.

Well, anyone could tell you that’s it’s difficult to tell someone’s gender at birth as they’re not yet capable of expressing it to you. And I’m not too enamoured of the unqualified grouping of “male” and “female,” either. Anyhow! A daily hormone pill has been developed that can be taken by pregnant people whose fetuses may have CAH. Meanwhile, a 2008 study found that, compared with a control group of relatives without the condition, there were proportionally higher numbers of lesbian and bisexual women among those with congenital adrenal hyperplasia ‘who were not treated prenatally’. There is some concern that this pill will be used by parents who wish their children to be heterosexual.

That such a treatment would ever be considered, even to prevent genital abnormalities, has outraged gay and lesbian groups, troubled some doctors and fueled bioethicists’ debate about the nature of human sexuality.

Rightfully so has the idea of a treatment that may reduce the chance of someone being gay provoked outrage and troubled minds. I don’t think we can say that sexual orientation is a totally prenatally-determined thing, but that’s really besides the point here: the idea of people wanting to take pills in order to determine sexual orientation is a disturbing one. But that’s far from being the only disturbing thing going on here. ‘Even to prevent genital abnormalities’. That’s just waved away as a given in the article, and in general: it’s supposedly a given that genitalia that don’t fit certain norms are a possibility everyone would want to get rid of, like they’re so “abnormal” that it’s not even worth thinking through. And with the way this article frames the issue, it’s tossing intersex rights aside and positioning queer rights as the primary thing that is going on here, taking up a fair portion of the piece. There’s no good reason why both can’t be focussed on.

Read More…Read More…

Things That Make My Life Easier, An Invitation (Part 3 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Part 1Part 2Part 3

This is a series I always hoped would catch on. Because hey, I can write about stuff that helps me live my life, but that’s only one experience. I would love to see a community full of people writing resource posts for other folks who are living our different sorts of lives. I know we all negotiate shortcuts in the process of getting through our days. I know we all have well-trusted tips and tricks for dealing with society’s demands of us — fair or not. And I think we can all share them — writing about our own experience, and letting it apply where it might, and not where it doesn’t — and not creating expectations of individuals to respond to individually-shared recommendations, with all the problems that can cause.

Anyway, there is a great range of experience within the world of disability, much more than is let on by mainstream narratives, and another reason I appreciate the chance for us to talk about it is that it exposes the nondisabled world to all the things that go into living with a disability, the way that disability can make life very different, and appreciating that in a more-than-superficial way. While knowledge of certain experiences doesn’t eradicate prejudice against them, ignorance certainly makes it more likely, and is one of the easier issues to address — we talk about our experience (among ourselves and for all listeners); they catch parts of it and get curious and start listening.

No one is required to educate those who hold privilege over them, but most of us do practice the art of education every single day, as our lives play out in front of those around us. We are used to explaining things. It is tiring, and it is wrong when people demand or expect it of us. But when we give it freely — that can do a whole world of good. What makes it bad is not the act of an unprivileged person explaining pieces of their life to a privileged person — what makes it bad is the privileged party’s expectation that we will explain. That is what sours the entire experience.

But sharing what helps us with our lives — hopefully helping other people in similar positions who might be able to use the knowledge we gain from our day-to-day struggles — there is room for great good in that.

There is no shame in doing things differently. There is no shame in taking a different route to reach the same end point. There is no shame in reaching a different end point, even! If it works for you, if it makes your life easier, that is what matters. Not your conformity to expected methods of doing things, but the fact that it accomplishes your starting goal or gets you closer to accomplishing it.

And, hey, part of disability is to learn to compromise, and change goals altogether. To realize that all the milestones you are “supposed” to reach aren’t necessary to a successful, enjoyable life. You don’t have to have a career, or even a job; you don’t have to complete or even begin higher education; you don’t have to find a heteronormative partner, get married and have kids. You don’t have to fulfill all the responsibilities heaped on you by a society built around the particular qualities of nondisabled people. You don’t have to shower every day. You don’t have to appear “normal.” You don’t have to have a huge local social circle. What you have to do is whatever makes the struggles of your life easier on you. That is all.

There is no shame in that. There is no moral value attached to a method of doing something. It’s a method, that’s all. Just a method. One method. Not the only option.

In that spirit, I’m going to try to pick this series back up, and I’m hoping that maybe other folks will pick it up too. Because I really do believe it has great potential for the disabled community. We already come together and share resources; maybe we can do that while communicating our fundamental humanity to the outside world as well. And they need to listen.

They’ve gotta learn at some point – they never know when we’re going to spring a pop quiz!

So please, listen and read, and write or speak your own experience. Let me know if this is something you’d like to do, and if you end up writing anything! I don’t want this to be my series. I want it to be everyone’s.

Here’s what I’ve written on so far:

intro post / shower chair, shower chair redux / Tempurpedic Symphony pillow / cute pill case / TENS unit

Readers — what can you add to that?

Things That Make My Life Easier, A Reintroduction (Part 2 of 3)

Part 1Part 2 — Part 3

In the realm of disability, there is a lot of terminology like: assistive device, accommodation, care services, mobility aid, various sorts of therapy/treatment (physical/behavioral/occupational/speech/etc.); and so forth, about things/people/services which fill various common needs that people with disabilities share. The unfortunate thing about these terms is that they imply particularity to disability. But in truth, these things are not special to disabled people.

What are the needs being met? Things like: mobility and transportation, mental function, physical wellness, self-care. But we do not name the things abled people use to fill those needs as being special to abled people. This is because ability is an unmarked identity. That is, ability is seen as normal. The needs and behaviors surrounding ability fade into invisibility; they are not about ability, they just are. But disability is marked — it is special, notable. It can never just be; it is always about something, always representing and signifying something particular.

Along those lines, consider these examples:

  • When an abled person wears shoes, they are not called “mobility aids.” Shoes are just things that normal people wear to do normal things. But canes, wheelchairs, and braces are special “mobility aids,” rather than just being things that normal people use to do normal things.
  • When an abled person rides in a car, bicycle, or public transportation, they are not using “mobility aids.” They are just using transportation.
  • When an abled person gets their hair cut, the stylist is not called their “personal care assistant.” Only disabled people need assistance with personal care tasks.
  • When an abled person eats a meal cooked for them by someone else — a spouse or parent, a cafeteria or food court, a restaurant — the person preparing the food is not their “personal care assistant,” despite doing for the abled person the same thing PAs do for PWD every day.
  • When an abled person uses a remote control on their television, this is not called an “assistive device.”
  • When an abled person types out words on a plastic board with small key blocks indicating letters of the alphabet while staring at a screen, or speaks words into the bottom area of a plastic-and-metal hand-held electronic device while holding the top to their ear, this is not called “facilitated communication.”
  • When an abled person is put through training at their place of work so that they can learn the tasks they will be performing for pay, this is not called “occupational therapy” or “vocational therapy.”
  • When an abled person wears a bra, or a jock strap, or any clothing at all, this is not considered in the same category as slings or braces.
  • When an abled person climbs the stairs, they are not considered to be a special device thought up just for abled mobility.
  • When an abled person takes the escalator, they are not considered in the same category as the elevator or wheelchair ramp.

The trend evident here is that there are all sorts of things that help people live their lives. Having help to accomplish things — basic or beyond — is not special to disability. It is a fundamental part of humanity. Our society would not exist without all the little things we do, from products and tools to techniques and tricks to other people and relationships, to help us get through this world a little bit easier.

I want to emphasize this for a reason. A common trope in mainstream discussion on disability is that disabled people are helpless, and abled folk must take on the noble burden of keeping them alive, afloat. Disabled people need help with doing things, and it’s such a pitiable condition to be in, dependent on other people and things to get through life. Abled people pat each other on the back for the strength and courage and sacrifice they make in helping disabled people in their family or community. They often lament that would kill themselves before living as a person who needs help with things! And some of them take their considerable platforms to argue that because disabled people need help with doing things, their lives must not be good-enough-as-they-are, therefore their lives are not worth living at all, and we (the abled world) should withdraw all help and let them all die like they should have done as infants. (No, seriously, if your name is Peter Singer and/or you are the New York Times, this is what you say in all seriousness.)

In short, this idea of help-as-special-to-disability can be dangerous.

This is why I’ve come to like Things That Make My Life Easier: because that’s what they are. They aren’t super-special things that only people with disabilities can use. They aren’t super-special things that only people with disabilities need. They also aren’t things to be ashamed of. It shouldn’t be a hit to anybody’s pride to take shortcuts or to do things in an unconventional way. It shouldn’t be a possible insult to disabled people to associate themselves with icky, pitiable disability, and it also shouldn’t be a point of anxiety for disabled people who have concerns about admitting any sort of dependence or need for help. We can admit that we need things — or even just that those things are nice to have around — without it having to be a referendum on our identity, on our worth as a human being.

Or at least, I’d like it if we were able to!

So some of the things I post about are silly little things. Because they help me. Some of them are things that are particular to my disability — things that an abled person will likely not have to ever deal with, and may not be able to relate to — but that’s part of the human experience. I am a human being; there are other people like me who share these concerns, and they are human too. Part of the human experience is our experience. Because we are human. It shouldn’t have to be repeated like that, but it does. Disabled people have claim on the human experience. We can talk about our experience as disabled people, and it is not only about disability-in-particular, but about humanity itself. No matter how much it flames the insecurities of abled people, this is truth.

Next: An Invitation

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Things That Make My Life Easier, A Reintroduction (Part 1 of 3)

A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Body Matters: A Bow

“It’s nice to see you outside,” the woman’s voice said. I looked at her. She didn’t seem familiar. And what did she mean … how could she not have been seeing me outside? I was a little thrown, “I’m sorry. I don’t recognize you with your sunglasses on…” “Oh,” she chirped, “You don’t recognize me at all.”

This one is clearly a keeper in the “close encounters with the non-disabled kind” or “shit non-disabled people say” files. I keep a record of these misadventures as draft blog posts — partly because writing is a useful decontaminant and partly because the stuff of these encounters is useful to me as a kind of local bellwether on the body and disability. This particular moment of interaction has stuck with me, because it’s hooked up with some ideas I have about disability, the body, pain, and community. This kind of stuff is always on my mind, because on and off stage I am deeply concerned with socio-cultural understandings of the body.

My brief encounter goed straight to the difficult matrix of injury/illness chronic injury/illness, aging, and disability. It’s about how we imagine living in other people’s bodies and the value we ascribe to them; it’s also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality. And that’s just on a personal level; things get more complicated when we think of the body as a political space. Even as we individually struggle with the personal implications of our bodies, we are also aware of some of the intersections of personal physicalities and public policy.

An embodied life is neither easy nor simple. But embodied lives are what we have, and bodies have this tendency to be more vulnerable than we would wish. As a phrase, “embodied life” opens a necessary gap between body, self, and life. While I am politically for claiming an identification of body and self, it is sometimes useful to separate them in order to get at how we understand our bodies in society.

Here’s what I mean. Bad backs can range from spinal cord injury, spinal cord degeneration, disk degeneration, disk injury, some combination of all of the above, soft tissue, a returning/chronic injury/pulled muscle, or short term injury. It’s all about the spinal cord, the bone of the spine or the tissue surrounding it. The physical consequences of an injury to the spinal cord at, say, c-6 are different from those of a dessicating disk at l-4. Living with quadriplegia is nothing like living with soft tissue back pain; I wouldn’t even begin to compare the relative levels of daily maintenance.

Yet people do. People simultaneously think that a back injury that keeps them from running a marathon or that gives them a common experience with someone who is disabled from, say, spinal cord injury. Let me say it now: Your injury, pain, etc., may cause you all kinds of physical limitations and restrictions, but despite your discomfort and vulnerability, they very often do not rise to the level of disability. I’m going to create some hot water for myself here, so bear with me.

Disability is often contextually defined. Disability for legal purposes is different from disability for SSI is different from … you get the picture. This contextual set of definitions often run counter to our first thought — that disability is a state of the body. It is, but often the medical definition of disability and the value and interpretation of disability in a variety of contexts are in tension with each other. Because of this complexity, I usually agree with the disability studies impairment/disability distinction. It works like this. The medical state of my body — my impairment — means that I use a wheelchair. But I am not disabled by either the fact of my wheelchair or the state of my body until I am unable to gain entry into a building because there is no ramp. Society and its attitudes are disabling, not the medical state of my body.

Comparing medical states of the body is not what I am talking about. The differences between the lived experience of primary progressive multiple sclerosis and the lived experience of a herniated disk seem to me obvious. And the comparison isn’t productive — no matter how bad the disk might be. I am talking about what our society makes of these two different bodies.

With regard to work, exercise, and life, a person with a “slipped disk” could easily be regarded as disabled. But our culture treats someone with this impairment very differently from someone with, say, spinal cord injury. And I don’t know why. Perhaps, it is in the way the impairments are legible/visible to the external viewer. Perhaps, the difference lies in the possibly mistaken understanding that it is “just” a disk. Recovery is around the corner. Whatever the reason (and to be honest, I don’t care), I do know that one set of back impairments allows the person to retain social value and capital — even if they aren’t working — while another strips away humanity and leaves the person vulnerable to all kinds of prejudice and stereotyping.

And that is part of it for me. Regardless of their medical complexity, some impairments are just medical states, while others plunge their person into a membership in a group of people who experience prejudice, oppression, discrimination, higher rates of unemployment, violence, … and, on the good side, a wild, wonderful history and culture. Some impairments, no matter how visible they are on the body, allow their person to continue to participate in society, while others leave their person vulnerable to such idiocy as the commentary of my stranger.

So, don’t. Just don’t. Unless your impairment places you in my world and you claim my history and culture as yours, do not think you know what I am going through. We may share similar manifestations, even take similar medications … but medical complexity is not the primary way I build community and recognize allies and friends. You can have your pain and I will support you in your experience, but, please, recognize the difference.

And if that is you out there, bowling on up to disabled folk, congratulating us for being out, blessing us for being so inspirational, courageous, brave, whatever … please, just don’t. You know nothing of the complexities with which we do and do not live or even of the joys of our bodies. You are on autopilot, mindlessly reaffirming cultural fears and prejudices which, actually, we can do without. Shut up. Go away.

And with that, dear peeps, I take my leave. It’s been wonderful being here. Thanks for the comments, emails, and other kinds of interaction. If you have liked what you’ve read, you can find me on my site Wheelchair Dancer and follow me on twitter


“The body says what words cannot.” ~~ Martha Graham