feminist blogs

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.

There is an intersex advocate interviewed in the article, an Anne Tamar-Mattis. Tamar-Mattis is executive director of Advocates for Informed Choice, an organisation aimed, according to the AIC website, at ‘promoting the civil rights of children born with variations of sexual anatomy’. But Tamar-Mattis’ contribution is framed in a section of the article aimed at exploring the hormone treatment as an alternative to surgery. Her words are largely backed into a corner here, really. The article doesn’t leave a whole lot of room – only about a sentence – for the idea that intersex people might decide on their own terms, might want to keep their genitals as they are.

Getting back to what I was saying at the start, the article frames those individuals with CAH as girls, females, assuming that they all identify that way. Already slotting them into a box, this is indicative of the idea that intersex people are an aberration, that they must be pushed into somewhere, that they are inevitably girls with something different. I’m sure many or most people with the condition identify as girls or women, but the wording here assumes this is the case for everyone, pushing all other possibilities out. It’s just one of the reasons I grit my teeth when people are referred to as “females” or some such!

I’m feeling some ableism, too.

Undetected, the abnormality can make both male and female infants critically ill within a few weeks of birth because of an associated salt loss through the urine. The defective enzyme also causes a deficiency of the hormone cortisol, which can affect heart function, and an increase in androgens produced by the adrenal glands.

There are not a lot of things in this world that keep me awake at night. One of them is being told people should not be allowed to exist, would be better off not existing, should be something else, because some part of their body or who they are is defective. It is not as though being ill is the worst thing in all existence, either, as though people with affected heart function deserve to not exist, to be altered in order to prevent illness. Wanting to disappear people with medical conditions is an attitude I find nauseating.

There’s a lot more to unpack in this article, but I think I’ll leave that to you lot. What do you think?

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

Part 1 — Part 2 — Part 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?

Part 1 — Part 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.

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.

“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

WCD

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

You’d think they had nothing in common, right? You’d be wrong about that. But perhaps the only way to discover the connection is, as I did, to become an American citizen.

Dressed appropriately, the Wizard, a couple of friends and I shot off to an older, but nicely renovated small town theater to be naturalized (well, I did; they came to watch). And it was the experience of a lifetime. But perhaps not in the way a potential immigrant would expect. I was happy for the whole thing to be so multi-cultural — information about voting in 5 languages, people of different races and cultures so alive and so visible — but I was shocked by the images of America that pervaded the ceremony.

I’m not a great believer in ritual; I learned that ceremony doesn’t always make the difference you think it should shortly after we were married. But I do believe that what we say and do in ritual and ceremony are key to understanding what we think about ourselves — as people and as a culture. So, I was curious about what I would think and feel about being in a room, in a highly emotional situation, with a lot of people all doing and saying the same thing. I don’t do group. It scares the *!@#* out of me. For a while, I wasn’t even sure I would say the required oaths aloud — I don’t say them for the country I was born in, so I wasn’t clear on what would make me say them for a country I was choosing. (I did, though. Just this once. I even placed my hand over my heart, but I did not stand — more on that later.)

I don’t know how much you know about the process. But it’s like being in a machine: 500 people in my ceremony, and they were doing three ceremonies on my day. I was very unaware. I won’t say naive, because I guess I could have found out more, had I asked; I just didn’t think to find out. I didn’t even know who would be performing the ceremony or who else would be there. What would I have to do? These were questions to which I should have had answers, because as it was, I was unprepared.

The people being sworn in were separated from our families; we sat in rows according to some impenetrable system (whether or not we had a certain number of points on our application? people in our party? who knows?). I and the only other wheelchair user were placed at the back of the hall behind a wall over which I could barely see. I was prepared for it to be a multi-racial, multi-ethnic, multi-lingual gathering; I was curious about what the disability take would be.

Disability and immigration have a long history of something between uneasiness and rampant discrimination. At the moment, the ACLU has filed suit against the deportation and indefinite detention of people who are not able to understand the proceedings against them. Canada recently denied the immigration of a family, because one of the children was disabled (link to a summary of Canadian policy and the idea of disability as an “excessive demand” on the system). This link is to a post on my site about the quirks, disability and otherwise, of the N-400, the form you file to apply for naturalization.

As we waited to become American, a screen slideshow of iconic images of the US floated before us; the photographs, mainly of North-East coastal American and San Francisco, were accompanied by military music. This made sense: between the pictures of the Golden Gate Bridge, the Statue of Liberty, New England lighthouses and Mount Rushmore (no, not coastal), were pictures of America’s troops, her planes, her ships, and her other paraphernalia of war. I was curious about the people in the pictures of immigrants of the past — shown, of course, in huddled, downtrodden mass poses of people yearning to be free. What had happened to them? Where had they gone?

Mostly, though, I was surprised by the pictures chosen as representative of the country. So many politicians seem to refer to the mid-West and South as places of the average American, but there were no pictures of, as my friend put it, “waving wheat.” No, the America pictured was both coastal and warlike. For some, the coasts are home to America’s elite. And this made the conjunction of imagery somewhat incongruous. Do Washington, New York, and New England elites fight the country’s wars?

I don’t know how much standardization there is between ceremonies. Was mine an accident of location or are they all like this? Who conducts them? (An official from USCIS, it turns out). I worry about standardization because mine was totally chaotic. It’s an awful thing to say. But it was totally chaotic. The officiator had not practised what he was going to say. So, he just talked; he wasn’t the best of public speakers. I think he was aiming for inspirational, but he didn’t have anything original or new to say. He rambled (he probably does a gazillion of these things and the awesome nature of the moment wears thin). When he opened it up to his counterpart, they joined in reading a list of notable Americans.

I have to admit. Many of the names read aloud were unfamiliar to me, so the effect is clearly a product of my ignorance. Nonetheless, the names that I recognized were either famous weapons scientists or actors. You can imagine my horror at, and I quote verbatim, the following string of names: Liam Neeson, Madeleine Albright, Pamela Anderson… Yes, you read that aright. My jaw hit the floor, and I missed the other names. I looked around; no one else seemed perturbed and the moment rolled by: these are notable Americans. And, in truth, I guess they are. After all, no one has heard of me; my name won’t be read before thousands of people, eagerly anticipating the moment when they will become citizens of a great nation. Snobbery or not, I want to differentiate between the work of the first female Secretary of State and the work of an actress perhaps most famous for her body and personal life.

I was drawn back into the ceremony at the moment we were supposed to take the oath. We were called upon to stand; the other wheelchair user and I looked at each other. He winked; I rolled my eyes. He chortled and was shushed by his family. There was a roll-call of countries of origin; people had come from all over the world, including the USSR and also Russia. Unbeknownst to me, my peeps and I all had a similar moment: had the person from the USSR been in the system so long that their country of origin was now just Russia? Silicon Valley has a particular immigrant population: mostly, people hailed from India, Pakistan, China, or Mexico. There were a couple of Brits and Canadians.

The current naturalization oath is:

I hereby declare, on oath, that I absolutely and entirely renounce and abjure all allegiance and fidelity to any foreign prince, potentate, state or sovereignty, of whom or which I have heretofore been a subject or citizen; that I will support and defend the Constitution and laws of the United States of America against all enemies, foreign and domestic; that I will bear true faith and allegiance to the same; that I will bear arms on behalf of the United States when required by the law; that I will perform noncombatant service in the armed forces of the United States when required by the law; that I will perform work of national importance under civilian direction when required by the law; and that I take this obligation freely without any mental reservation or purpose of evasion; so help me God.

I took it, reflecting on the exchange in my interview about whether I as a disabled person could bear arms — it was decided that I could usefully fly a drone plane. I found myself fascinated that the discourse of documented immigration is one of war while that of undocumented immigration is one of work. War disables so many of America’s citizens, transferring them in an instant from membership in a group of those represented in her defining imagery to membership in a group with the highest unemployment statistics. Once a soldier; now, mostly, invisible.

But before I could get any further following the bitter irony, I had become a Yank. We were formally invited to wave our flags. I opened my voter registration materials, took out my little plastic flag, glanced at my disabled comrade to my right, and held it up in front of me.

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions. The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and FWD/Forward]

After many of our performances, the dancers of our company come back on stage for a Q and A or talkback or something. It’s my least favourite part of the job. I like the protection of the stage and the lights. I will do anything on stage because the firm line of the proscenium protects me. Even when what we are doing is risky, physically and or emotionally, even when I am feel most stripped and vulnerable, I take refuge in the knowledge that I am safe behind the light, the curtains, and the edge of the stage. In that limited, bordered place, I will give you my all. When the lights and curtain are taken away and we reappear (usually soaked in sweat, dressed in half in street clothes and half in costume, water bottles, scarves and jackets tightly in hand), we are no longer the wild, fierce beautiful things on stage; we are human.

Revealing our humanity is, of course, part of the point. Too often, despite the sweat and the breath, dancers seem untouchable, ethereal, and surreal. As I sit before the audience, though, I usually just feel vulnerable and clunky. I’m not so worried that someone will say something negative about the performance — but now I think of it, that would be awful — I find that I am afraid of what people will say about disability and art and that I am unwilling to keep explaining my physicality for consumption by a medically fascinated/intrigued/uncertain audience. It’s one thing to be in control of your self-presentation as a dancer; it’s another to have to explain why you are the way you are; and still another to have to welcome commentary that, in other spaces, you would write off without a second thought.

Here’s what I mean. A choreographer recently changed the ending to one of his pieces. The first version slowed carefully. A voice calls to the dancers on stage; we move; it calls again; we move, this time for a shorter duration; and again; we freeze, recognizing our concluding shapes as the end of a thirty minute journey. We’re here; our time has come to an end. The lights come down slowly; we look at each other intensely and acknowledge the power of the experience we have shared. In the new version, the voice calls to us in the same way; we mark out the seconds to the end of our journey together. But on the final call, instead of finding a quiet stillness, the movement takes us out of ourselves. Time cannot stop; this cannot be the end. We move. And we move. And we just keep moving as the lights come down into black forcing us to stop. I love both endings. They resonate deeply within me; I find myself wanting to cry sometimes, so deeply do I feel the end of time.

After that moment, I want people to talk about the journey they’ve shared with us. And they do. It’s just that all too often, we aren’t on the same pathway at all. Two recent comments have got me thinking. In the first, an audience member is pleased and excited that we’ve “earned” our applause: that people aren’t just clapping because some of us are disabled and we’ve managed to lift a finger. The speaker is exaggerating, of course, but we have encountered situations where reviewers have given positive reviews simply because being disabled and being on stage is so “inspirational.” In these situations, people aren’t engaging with the work; they are reaffirming (for their own safety) a set of useless societal stereotypes about disability, artistry, and virtuosity. I don’t know how to react to such comments. I DESPISE any form of the word inspiration that isn’t being used to describe an intake of breath (link is to my site and a post about it). If seeing almost two hours of fierce dance and intense art cannot break people out of this mode, nothing will.

At the same time, however, I think of this comment as having a nasty, nasty edge. We “earned” our applause, (damn right we did), but we earned it by executing a series of movements that are recognizably extraordinary. When we dive, roll, cartwheel, wheelie, lift, run, jump, balance, …., we are doing things that almost anyone can recognize as needing skill. It’s physically, technically hard. But what if, as a disabled dancer, lifting my finger and bowing my head were as technically complicated for me, in my body, as any of the daredevil things a colleague and I currently do. The work and the skill would be the same, but who in the audience would recognize that I had earned my applause as deservedly? If we continue to push for extreme movement as somewhat definitional, the dance world will remain exclusive. And that isn’t right. Dance belongs to the moving body, not the institution.

A second audience member expresses delight at our work; it’s a particularly sweet delight since this person was concerned about cringing. The comment stings me deeply. It comes from a well-meaning place — that, I gather — it bites nonetheless. I’ve seen “cringe-worthy dance.” If you go to a lot of performances, you will sooner or later hit a couple of “bad” ones. But this audience member made an association between the cringe-worthiness of the performance and the presence of disabled performers. Such is the state of disability-awareness that it is still possible to say this, aloud, in front of other people without an apparent sense of shame. There’s a kind of assumption that a fear of cringing is a shared feeling, and I suppose it probably is.

To my mind, cringe-worthy performances by disabled people come from denying disability, from attempting to overcome it (in a saccharine, inspirational way), or from playing it for sympathy or good will. When disabled performers render themselves abject before your very eyes because that’s what our society expects, it is indeed cringe-worthy. But only because we should cringe at a society that so devalues the humanity of some of its people. We should cringe before a culture that insists on building an understanding of its physicality by casting out the physicality of others. It’s not about cringing because there are disabled performers on stage doing what looks like, well, dance.

It’s kind of like going to a freak-show. If we can be sure that the disabled performers control and manipulate the gaze of a non-disabled eye, that’s one thing. But if the performers are unable to maintain a sense of, I dunno, irony, distance, control; if they seem only to play to societal expectations and to lose themselves, that is cringe-worthy. It is cringeworthy because you, the audience member, participate in the unthinking consumption of another human being as they reiterate for your entertainment a set of demeaning social stereotypes. Neither the performers themselves nor the performance are worthy of your cringe.

On the way home, the bitterness burning inside my stomach, I wonder at the history of “cringe” as a word. A quick check of the Online Etymology Dictionary confirms for me a thought that has been gnawing at my gut. Cringe and crinkle share an etymological history: they are both connected to the Old English word, crincan. “Cringing,” as the commenter used it, contains a sense of shrinking away in fear. It’s a very physical word; you can see a cringe in the mind’s eye and experience it in your body. The twisted, bentness of cringe has a softer dimension, though, in the branch of words that is connected to our current crinkle. Crinkle has a sense of “yielding.”

I hit the accelerator as I swing into the curve that takes me up the hill to where I currently live. I feel my body bend and twist with the steering wheel as the car, the steering wheel and my torso join in a driving dance. What if, unbeknownst to the commenter, “cringe” actually was the right word? What if our performance actually was cringe-worthy — in the sense that our power evoked a kind of yielding and softness in the audience’s bodies? What if, as they softened and let go of prejudice, the passion in our movement transported them to a different place? The car parks itself (thank god); I open the door and bend forward experimenting with a cringing, crinkly softness.

Do you remember the picture in National Geographic of the so-called Afghan girl?

The photograph, taken by Steve McCurry, was of Sharbat Gula; her image adorned the cover of a 1985 issue of National Geographic (The link is to National Geographic’s discussion and review of the story almost 20 years later). I was barely aware of the wider world, then, but as I look back through web discussions (weird, that the web doesn’t go back to 1985, eh?), it seems that the Western world was fascinated with her face, her possible life, her unknown story, her “exotic green eyes,”…. You get the picture. She became a symbol; McCurry won Best 100 National Geographic Pictures.

There’s so much to be said about this story, about the confluence of race, gender, and feminism, about the practices of marketing and Western media — it’s an uncomfortable and disturbing mess. Her value as a symbol was and, indeed, is still so compelling that National Geographic went back in 2002 to find her, to see what had happened to her. Among the outcomes of that visit was a second image of her face — discussion this time is about how hard her life has been. The two images are at the root of a kind of Shepard-Fairey-like tradition of making and remakings of the image — some with honourable intent and some not — all over the internet. (The link is to google image search for “Afghan girl.”)

And now, there’s a third. This latest photograph is the focus of my post today. It’s on the cover of TIME magazine. Once more, the face of a beautiful, young Afghan woman stands in for a discussion of war. This time, however, the woman is visibly disabled. As the cover makes clear, the torture that rendered Aisha disabled, is one of the consequences/risks of an American withdrawal from Afghanistan and the consequent return of the Taliban. I have nothing to say about this thesis; my focus is the value of disability in this picture.

Some More Provisos

So this is kind of a post about ADD, ish. Ish because, I’m not an ADD expert – I’m not even a psych major – and I can’t give anyone any kind of official perspective or information about ADD. Which, normally this would never stop me, but here I’m like, a guest in the house of Feministe, so I feel like I have to wear pants, or… something.

But ADD is a thing that I sort of feel like – for obviously totally personal reasons – deserves to be talked about more than it is, and is, also, one of the few subjects on which i’ve ever written where I’ve had people not just tell me they thought my post was cool or whatever, but actually like, thank me for talking about it, so – a post about ADD, ish.

The first thing to know is: ADD is real, and fuck you for telling me otherwise. I haven’t really had a comments policy, per se? And you have all been quite lovely to me so far (& I apologize for not being around to engage more!). But yes: comments to this post informing me that ADD is made up by the pharmaceutical industry, or an excuse made up by yuppie parents of not-gifted children, or WHATEVER THE FUCK, will get deleted, no explanation given and no questions asked, because fuck you, I don’t need more of that shit than I get.

Which isn’t to say there are NO parents who “push” for an unnecessary and/or inaccurate ADD diagnosis, or that it’s never misdiagnosed – and I mean, I am super pro-diagnosis but I also sort of feel like if you are diagnosing it in the proportions that some elementary schools are doing so, you need to sit down and reevaluate whether your standards of curriculum and behavior are developmentally appropriate because like, maybe just 7-year-olds in general can’t sit still for four hours, and will naturally outgrow that, and you should let them do so, gradually. It’s just to say that I am sick of people using these situations to imply that that is, somehow, what all ADD diagnoses actually are if you in your infinite wisdom look closely enough.

Oh, and a teensy rebuttal, because it is not worth my time to go into this extensively, to the people I’ve known who are like, well EVERYONE forgets things sometimes, has trouble concentrating sometimes, is distractible sometimes: yes. Sometimes. Not every waking hour of your entire life. That feeling you get, when you’re out of it for some reason, or sleep deprived maybe – that is my brain, 100% of the time. Except when I’M sleep deprived, it’s even worse.

The other thing to know is, and maybe the main thing I would like to get across if I don’t actually manage to come up with like, a “point” to this post (will she? won’t she? STAY TUNED), is: ADD is not about “not trying.” People with ADD are trying. They are probably trying harder than any non-ADD person ever has at the very tasks at which they fail, because guess what: non-ADD people don’t have to try that hard! You can bet your fucking ass I’m trying, on a regular basis, not to misplace my wallet again, because that shit is annoying and also, given my history of losing wallets/keys/cell phones/glasses/FUCKING EVERYTHING, scary. Most people don’t understand this, because most people don’t understand how it could be so fucking hard not to lose a wallet. Just put it in the same place every time! Simple as that!

Right, so: in theory, great. In practice, it takes all of a millisecond’s distraction to completely obliterate that thought from my mind. And this is another hard thing to get across, in my experience, is like: obviously, right, in theory, I try not to forget. In practice, if you could actually not-forget through sheer dint of will, no one would forget anything ever, because the problem with forgetting is that once you’ve done it, you have also forgotten that you’ve done it. So: one distraction, and the wallet stays in the pocket of the coat I don’t wear the next day. Or in the purse I don’t use normally. Or on the kitchen counter, because I forgot to let go of it on my way to get some water, put it down, and – gone! Gone from my mind! Like it was never there.

This also means it can take a ton of time to get really basic shit done. Like: open up an email, three sentences to send clarifying plan with a friend. “yo! yes i would totally love to meet up wednesday, how about” CNN NEWS BULLETIN FROM MY BRAIN: weren’t you going to check up on that thing? OH THAT’S RIGHT, I WAS – and now that thing is the thing that exists in my brain, and I am off checking up on that thing, and more likely than not I’m deciding to post about that thing on Tumblr, and perhaps interrupting that post to write ANOTHER post on Tumblr, because I decided I needed to write that second post right now, and then I have to go back and finish the first post, and… why does my gmail tab say “compose message”? OH RIGHT: “how about at 96th & broadway? we can get dinner, maybe see a movie? excited! yayy, love, me” OKAY, THAT’S DONE. So, post to Tumblr, get a snack, read somethi–why does my gmail tab say “compose message,” still? I wrote that email, didn–oh. But I forgot to hit send.

(TRUE STORY: that paragraph up there that starts “Oh, and a…”? I started writing that in the middle of the previous paragraph, got distracted, came back, finished the above paragraph, and was like, wait, wasn’t I writing something else on this thing, also?)

So: people with ADD, we are not not-trying. I actually knew a guy who sort of cultivated a habit of being late to things so people wouldn’t expect him to be on time, and I kind of hated him for that, because like: fuck you! You are giving the chronically late a bad name!

The chronically late thing, by the way, much like the above: about to go get dressed!

Brain: WAIT! BEFORE YOU DO THAT! I HAVE A NEW THOUGHT FOR YOU!

Me: What? No I… I was going to… do something else… wasn’t I?

Brain: the fuck should I know, HURRY PAY ATTENTION TO THIS THING.

Me: OKAY OKAY OKAY, gee don’t rush me! Gawd, brain, you’re such a jerk!

BRAIN: [undoubtedly cackles evilly at my lack of awareness of just what a jerk it's being right now]

Lather, rinse, repeat, and suddenly it is fifteen minutes later and I am really confused about how that happened! Every time, it gets me. And then I am late, and I feel really bad. Really, please believe this: I feel terrible. Every single time. Because people are like, I don’t get it, it’s not that hard to be on time, obviously you don’t care or you’d make an effort. INCORRECT. I care. I AM making an effort. I am making more of an effort than you, hypothetical non-ADD person, ever have had to make in your life to be on time for something, because for YOU, it’s not that hard, but for ME… like, fuck, do you think I do this for fun? Do you think I like missing the first ten minutes of class, or getting in trouble at work, or making my friends wait? NO. IT SUCKS.

It sucks like it sucks to lose your cell phone like once a year, like it sucks to lose your wallet all the damn time, like it sucks to lock yourself out so often that when you walk into the security office of your dorm sheepishly you just get an, “…again?” no matter which of the four guards is on duty right then, like it sucks to forget to do assignments, like it sucks to do assignments and leave them at home, like it sucks to think you’ve left it at home and find it in the back pocket you swore you looked in when you leave work that day. Every time I leave a restaurant, or a movie theater, or get out of a cab, I have a brief moment of panic. If I’m rooting around in my bag for something and it takes me longer than three seconds to find it, my nerves kick in because, oh, fuck me, again? really? did I really manage to fucking do this a-fucking-gain?

TRUE STORY: I just remembered, for about the sixth time in the past week, that I need to email the ADD counselor I stood up for our scheduled phone session a week ago. REAL LIFE EXAMPLE OF WHY “JUST WRITE IT DOWN” DOES NOT WORK AS ADVICE FOR PEOPLE WITH ADD: I totally remembered the appointment, is the thing. I was sitting in a cafe in my neighborhood doing some reading, and I made sure to leave at 1:30 so I could be home by 1:45 so I could make my appointment, and then I did do that, and I was so proud of myself for remembering, and then the next time I thought of it it was like 6 and I was on my way to dinner with a friend. And then I kept thinking about it every now and then, but this is the first time I’ve done so while at my computer, so: there you go, Dr. H! Sorry it took me a week to email you back!

TRUE STORY: I just now finished that Oh and a… paragraph.

It sucks. It’s terrifying, living with a perpetual murmur in the back of your head of shit, shit, what is it, what is the thing I fucked up recently because I must have fucked something up recently and I have no idea what it is. It sucks losing the trust of people you care about, and it really sucks knowing they’re totally justified, because no one trusts you less than you. It sucks that when people aren’t exasperated with you, they’re laughing at you, because like – look, some of this shit is funny, okay? Me forgetting my ADD counseling appointment: undeniably humorous! Most of the time, I am on board train lol-ADD, because… well it beats the alternative, and also fine: it’s funny.

But sometimes it stops being funny, and sometimes it’s something stupid, like sometimes you’re looking for your phone for the sixth time that week and it’s no big deal, you’ll find it and you don’t need it urgently, but this is on top of so much other stuff that it just kills your fucking mood because you are so tired, of having your brain. I get so, so tired of having my brain.

And I get, as I mentioned way up there with the NO, SERIOUSLY, ZERO TOLERANCE FOR DEBATE OVER THE EXISTENCE OF ADD IN THIS THREAD, really fucking tired of people assuming I am wired like them and therefore if only I would just do the things they do, I would obviously get along in the world just as well as they do, because no. No, I am not wired the way you are, no, the advice that works for you doesn’t work for me – and all helpful advice I ever have received on this subject has come from people with ADD.

Which bring me to one positive aspect, for me, of being ADD, which is: most of the careers I am looking into for long-term plans involve working with kids; currently #1 on the list is teacher. I’ve seen, when working with kids, the way teachers react to kids with ADD – just a constant stream from such an early age of informing them that the world thinks of them as bad, lazy, stupid, or rude. So I feel like, something I will be able to bring to the table is: I don’t think that. I know some 8-year-old isn’t calling out of turn because he wants to be rude; he just really has not mastered the think-before-opening-mouth process just yet, and I have a lot of compassion for that because welcome to my life. Even now, I have to be on guard about interrupting people, and have often been informed I do it a lot without even noticing – it’s not that I don’t care what the other person has to say, I just: thought, action, no middle step and sometimes I still forget I need to put one there.

(And, for the record – with kids always and with adults sometimes, it is not important to me, frankly, whether or not they “officially” have ADD or something else, whether they’re like this because something in their brain is like the way it is in my brain, or not, or whether neither of our brains has some identifiable ADD factor but work this way anyway.)

So – that’s a plus. There are others, too. People who like me, who find me entertaining to talk to, probably a not insignificant number of the things they appreciate about me are ADD-linked traits, or traits common to people with ADD. People who read my fucking blog, whatever I have that passes as a “style” is just the result of me typing the way I think, which is a pretty ADD way (like, the post a while ago that this one is semi taking its cues from is a pretty A+, if purposefully slightly – but only slightly – exaggerated example). When it’s not interfering with anything, I don’t mind and sometimes actually sort of enjoy the whole five-thousand-thoughts-at-any-given-second thing; the times it’s not being massively inconvenient I find it a pretty fun way to be, actually!

But when it sucks, it sucks a lot. And that is really not fucking helped by people refusing to believe me when I say I’m trying, or thinking I’m making the whole thing up.

Man, I have no idea how to wind this up, and also I have to get dressed or I’m going to be, ha, late again, and also jeez! This thing is massive! ADD people tend to talk a lot. Not all of them, but… me. Heh. So – yeah, I don’t know. Hopefully someone found this helpful; hopefully if you have ever thought that it is SO EASY not to be spacey and if people would JUST TRY they could manage and obviously they are just LAZY ASSHOLES or everything would be fine, you have seen the error of your ways, and if not: keep it the fuck out of the comments! I WILL delete that shit! Anything else on ADD or related topics, though – fair game.