Tag Archives: autism

Recommended Reading for November 16

Just by luck of the draw, today is all news all the time.

Autism is not a dirty word

“They have one line and they just repeat one line. It is a very bizarre sense of autism.” Pierre Lellouche, the French minister for Europe, made headlines with his attack on the British Conservative party’s attitude to the EU. For us Guardian readers, sympathy with Lellouche’s frustration in his dealings with Hague and Cameron will be overshadowed by annoyance, even outrage, at his pejorative use of the word “autism”.

Wikipedia tells us that autism is “characterised by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour”. Doesn’t that describe the Tories in Europe to a T? We all know what Lellouche meant. He wasn’t trying to give a diagnostic definition; shouldn’t we accept his choice of words – as his spokesman has pleaded we should, since “President Sarkozy is called autistic every day” – simply as a colourful way of making a point?

Mind Your Language: Words can cause terrible damage [And, again – I disagree with the idea that calling people names based on disability is the last acceptable taboo and that people are always punished socially for using racist slurs, and never punished socially for using ableist slurs. This isn’t a zero-sum game – we’re not somehow getting less abuse if we acknowledge that other people are getting abused, too. However, I think there’s a lot of good in the article.]

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

Employers anxious about hiring people with disabilities, but see their value

More than 100 human resource executives from a cross-section of Ontario-based firms took part in the study commissioned by the Job Opportunity Information Network. JOIN helps individuals with disabilities to find and maintain employment, and assists employers in recruiting candidates.

Among respondents, 36 per cent say they were discouraged from hiring a person with a disability out of concern that it would be harder to dismiss a person with a disability than someone without one.

Family: Gym Took Advantage Of Man With Disability

The brothers of an Indianapolis man claim a local gym took advantage of their developmentally disabled sibling, signing him up for a contract that he couldn’t understand.

Mark Hannon is 49, but functions at a much younger age, the family told 6News’ Rafael Sanchez.

That’s why they were upset when Hannon told them that two men representing Bally’s Total Fitness came to his door last week, offering to sign him up for a gym membership.

Harvi Carel: My 10 year death sentence

“So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”

Recommended Reading for November 10

Transcript from Melissa Barton Interview

This is a transcript of Sharon daVanport’s interview with Melissa Barton for the Asperger Women’s Association. Melissa’s son Alex was voted out of his kindergarten class Survivor-style by his teacher, Wendy Portillo, in May 2008; Alex has Asperger Syndrome. The Bartons have recently filed a federal lawsuit.

Let’s start with, this was her way of “fixing” Alex. And when I addressed the fact that, no, we were in the process of developing an IEP for services, we had a Student Assessment Team, and we all knew that he very likely had autism and more specifically Asperger Syndrome. This was real well-known and I addressed this with her, and she said to me that this was her form of psychology, and this was how she was going to magically heal my child.

Fat, Health, Invisible Disability and the Intersection Thereof

A major downside to being flatbound ’cause of crippling anxiety and dealing with epic depression was no energy to exercise, and not being able to go outside to do so anyway.

Now I’m on anxiety meds and antidepressants. I still don’t have the energy to exercise, and I’m still flatbound, because the anxiety meds make so SO. INCREDIBLY. TIRED. I just made a sandwich for lunch, because I’m starving (that’s a plus to the antidepressants–I’m able to notice when I’m hungry again) and I’m wiped out. Just from making a peanut butter and apple butter sandwich, I’m exhausted.

Michigan and Acupuncture

I found out from my acupuncturist that the state of Michigan is considering requiring it’s citizens to get a doctor’s referral to go to an acupuncturists. So, in other words, rather than hearing from a friend that she went to acupuncture and that person deciding to give it a try too–Michigan wants to make it so that you have to go to a doctor first, and then, if the doctor is willing to actually give you the referral, you can go to the acupuncturist.

Many people who know about the history of midwives in the U.S. know why this is such an extraordinarily bad idea. But for those who don’t know that history–what this particular requirement would do is first and foremost, place an incredibly unfair burden on those people who don’t have health insurance. Those who are unable to afford a doctor would simply have yet another health alternative option removed from their already limited health arsenal.

Just …. arrrrgh.

My school district needs to cut $1.5 million from the budget this year. $900,000 of that comes from “an accounting error”. Think about that.


Wouldn’t you think that *somebody* might have been suspicious of a miraculous decrease in special ed costs, given that special ed is both expensive and needed by more and more students?

In the news:

Good Dog, Smart Dog

Their apparent ability to tune in to the needs of psychiatric patients, turning on lights for trauma victims afraid of the dark, reminding their owners to take medication and interrupting behaviors like suicide attempts and self-mutilation, for example, has lately attracted the attention of researchers.

In September, the Army announced that it would spend $300,000 to study the impact of pairing psychiatric service dogs like Jet with soldiers returning from Iraq and Afghanistan with post-traumatic stress disorder. Both the House and Senate have recently passed bills that would finance the training and placement of these dogs with veterans.

Guest Post: Disability and Asexuality

Kaz is a German woman in her twenties, currently doing a maths PhD in the UK. She is on the autistic spectrum, stutters, and has been dealing with clinical depression on and off since her teens; she considers all of these disabilities. She is also aromantic-tending-towards-homoromantic asexual and identifies as queer. She blogged as Zailyn at WP for a while, but can now be found at either Dreamwidth or Livejournal, where she writes about fandom, disability, feminism, asexuality, and sometimes even maths.

Kaz’s note: First of all, this is not a 101-level post on either the asexuality or the disability side of things. However, I’m aware that asexuality isn’t really an issue that is on most people’s radars, so to anyone who doesn’t know much about it I suggest you check out AVEN in general and the Wiki in particular before reading or whenever you run into something that doesn’t seem clear.

Mod Note: Kaz & I talked and I’ve put in some links to terms as they come up.

A list.  The header reads: What is your Sexual Orientation?  Typed underneath with check boxes is Heterosexual, Homosexual, Bisexual.  Written in, with a hand-drawn check box, is other.  The check box is filled in next to other

Talking about the intersection of asexuality and disability is pretty difficult, because “asexuality” gets another meaning in disability rights discourse: it’s used to refer to the various stereotypes about disabled people’s sexualities. People do often seem to realise that this is problematic when it’s pointed out to them. However, what not so many people realise off the bat is that it goes beyond just “problematic”.

The stereotypes in question actually consist of a wide variety of things tossed together, some of which are in line with asexuality but many of which seem to have little to do with asexuality or in fact to be entirely opposed to it (I am interested to see how the stereotype of the disabled woman not saying no because she feels lucky anyone wants her is supposed to relate to asexuality, for instance). What they have in common, however, seems to be: denying disabled people their sexual agency and the right to make decisions or have knowledge about their own bodies and sexualities. The stereotypes about disabled people’s sexualities seem quite in line with the common tendency to consider us childlike, helpless and needing to be protected for our own good.

Asexual adults? Are not children. Nor do we (or, at least, should we) lack agency. In fact, the very existence of the asexual movement shows that we are in opposition to a lot of these ideas! We’re organising, we’re campaigning, we’re demanding that our sexual identity should be recognised and considered valid; disabled people are stereotyped to not have a sexual identity at all. (There is a distinction between the lack of a sexual orientation and a sexual orientation incorporating lack of sexual attraction that most people miss, but that is crucially important in this context.) Taking all the stereotypes disabled people get hit with regarding sex and sexuality and claiming that they all boil down to making them like asexual people? Like me? Is something I actually find really offensive.

An example: the desexualisation of disabled people often gets used to justify giving them less extensive sex ed or no sex ed at all compared to abled people. However, saying this is because they’re stereotyped as asexual entirely misses the fact that – asexual people need sex ed too! At the moment, it’s true that a lot of us will probably need it less than most sexual people, but it is still necessary as a large portion of asexuals do end up having sex at some point in their lives. Also, if mainstream comprehensive sex ed ever gets away from the “put the condom on the banana” “tab A slot B” style of sex education and starts talking about things like sexual orientation, explicit consent, how to figure out whether sex is the right decision for you at a certain time, etc. – I’d argue that we need this kind of sex ed more than many sexual people, as being a sexual minority tends to lead to more confusion and needing to figure things out. (There’s a traumatic experience I could have happily avoided if sex ed ran more in this direction.)

Also, using the name of my sexuality for these stereotypes obscures the fact that actually, they have negative effects for me, too. For instance, there is an astounding amount of ableism in the arguments people use to try and invalidate asexuality, ranging from “you should get your hormones checked!” over “that’s a disability, not a sexual orientation” to “you’re just all autistic!” You can imagine how the last one feels to me as an asexual autistic person! Worse, parts of the asexual movement buy into this and will talk about how they’re not autistic, their sexuality is valid – unlike mine, apparently?

…hey, I recognise this argument! But wait a minute, we can’t very well call it stereotyping disabled people as asexual if it’s being used to invalidate the sexualities of asexual people.
Continue reading Guest Post: Disability and Asexuality

Recommended Reading for November 6

Missing in Causation Talk: Actual Austistics:

Today I listened in a bit to the IACC conference call on “risks and prevention.” I ended up not listening to the entire thing, partly because I’m quite busy, and partly because the conference call format just does not work very well for me in terms of processing information and understanding what it’s said. And because of the different volumes at which people talk, I find myself constantly having to adjust the volume to prevent sensory overload. It is telling, I would say, that the IACC would select such an autistic-unfriendly method of holding its discussions. A chatroom, or another written format, would be much more accessible.

But the main reason I stopped listening was because of the conference call’s content, and the fact that I have very little desire to expend so much effort to listen to a discussion in which I am unable to speak and disagree with the premises so profoundly.

Invisible Disabilities, Accommodations, and the Obligation to Explain

From there on, I automatically assumed that Campbell Alexander was faking. You know, the dog was just a regular dog, but the owner had a huge sense of entitlement and thought his being an attorney made him eligible for access with a dog. Even way until the near end of the book, when the dog starts barking loudly in the courtroom and Campbell refuses to remove it, I assumed that he was really feeling better than the judge. Even if it is a service dog, it should behave itself, right? I couldn’t imagine that maybe there was a reason that dog barked, until the reason Campbell has a service dog in the first place was shoved right into all other characters’ and my face.

YOU are responsible for access:

I am so sick of people assuming I can always manage inaccessible venues – which gets them off the hook from having to arrange accessible ones – because I sometimes use crutches. My church is holding confirmation classes in a venue which has “a few shallow steps”. This unwillingness to think about access means that the burden is conveniently shoved onto me – the burden of finding accessible parking near enough that I can walk in, the burden of coping with steps, the burden of sitting on unsuitable chairs in pain for an hour and a half so that the following day is a nightmare of agony for me…

Restaurant 101: The Gimp Edition

If we’re going to a place we have never been to, we must check if it is accessible. EVERY time we forget to do this, or we assume that the place will be accessible, the restaurant ends up having two flights of stairs or narrow doors. Sometimes, the staff will tell us they are accessible “but we have a few steps out front that we can help you with.” Assholes don’t even know how much my chair weighs. Plus, HELLO, dangerous! Lawsuits!

If I can get into a restaurant, I will either not receive a menu (because I am just at the restaurant to look at the decor, evidently), or the waiter asks if we all want menus. Or they ask if I need a children’s menu. I’m almost certain that able-bodied folk do not experience this phenomenon, and this menu game is only done for those who look gimpy. I know, I know, I should ask for a menu if I don’t get one, right? But no, I just borrow my mom’s. I don’t feel like dealing with it. Bad activist moment.

In the news:

Charity says 9% of disabled people have been victims of hate crime

Almost one in 10 disabled people in the UK have been the victim of a hate crime, according to a leading disability charity.

For the first time, the 2009 version of an annual survey carried out by Leonard Cheshire Disability asked respondents whether they had faced a crime which they felt was motivated by their disability, with 9% saying they had.

“Even without a comparison for previous years, this is a shocking figure,” said Eleanor Gore, from Leonard Cheshire, who compiled the review. “It’s often hard to know how big a problem disability hate crime is as it tends to be very under-reported, and sometimes police and councils don’t recognise it properly.”

Recommended Reading for November 4

Disability and Loss

If you are born differently abled, the state of your body is absolutely normal to you but if you come to this identity after being fully abled, it is a loss. I think that it is important to acknowledge this for exactly what it is. I have had doctors tell me that this is not healthy or normal. I have been encouraged to medicate myself into a false state of happiness. Being sad makes people uncomfortable and to own this sadness as completely as I do, even more so.

The woman that I was four years ago is gone forever. The woman that I thought that I would become ten years from now will never appear. This is a loss and it is traumatic. I have only lost one person in this life who was close to me and dealing with this disabled identity is very much the same sort of feeling. It is natural to mourn and this does not mean that you do not accept or love your new identity; it means that the person you were before was also of value.

Torchwood 2×11: Adrift

Do not start with ‘but she’s not mad, she’s autistic’. This is not the moment for comparing isms and/or deciding that neurological disabilities deserve more or less stigma than psychiatric ones. For the moment, please, let’s lump them all in the same category, under ‘things causing one to be locked in a loony bin so that no one has to see us’.

This episode disrespects people like Amanda. Do not argue that it’s different because this is a special *space* madness that doesn’t follow the normal rules of psychiatry or neurology. It’s not, it’s playing on the same tropes human beings have been playing with since madness was *invented*. They made it a special space madness so they had an excuse to drag out those tropes and wallow in them without conflicting with contemporary knowledge of the realities of mental illness, post-traumatic stress, etc.

With this Steam-Powered Prosthetic Arm, I Could Be As Strong as… A Normal Person [Note: This post has some problematic content, such as using the term “wheelchair bound”, but overall I think it’s interesting and worth reading.]

Steampunk, as we all are aware, draws its inspiration from the Victorian era, which, for all its accomplishments, wasn’t very good to people with disabilities. Halifax, where I live, has a few Heritage Houses, many of which were built during the era, and it doesn’t take much to see that most of them are wheelchair-inaccessible. By and large, disability issues fall off the steampunk radar. That doesn’t mean there aren’t any steampunks with disabilities. Out of curiousity, I put out feelers on Brass Goggles.

In fact, there are quite a few, and disabilities don’t really stop anybdy — Mark F. has been living with chronic muscle and join pain for 30 years (plus osteoarthritis; we should note that for many, it’s never just one illness, but a whole clusterfuck of problems which exacerbate each other), and yet has managed to refurbish an entire work cubicle, among other projects. Many other steampunks with disabilities also involve themselves with the physical side of steampunk: DIY, costuming, conventioneering.

Linkblurt: We are assaulted

*WARNINGS apply to this post – descriptions of assault and abuse of people with disabilities, including sexual abuse*

In the news:

Alan Johnson ‘stops the clock’ on Gary McKinnon’s extradition proceedings

In an eleventh-hour intervention, Alan Johnson told MPs that he had “stopped the clock” on proceedings to give Mr McKinnon’s lawyers time to consider medical reports and make legal representations.

Mr McKinnon, 43, from Wood Green, North London, suffers from Asperger’s syndrome, a form of autism. He says that his hacking of Pentagon computers was nothing more than him searching for reports of UFO sightings.

Feel free to send me anything you think I’d like to look at to anna@disabledfeminists.com

Recommended Reading for October 30

#Antidev: Some thoughts on disability “devotees”

The issue of disability devotees — and let’s call a spade a spade here: they’re fetishists — divides the disability community at every level, from academia to, well, Facebook. It’s something women with visible disabilities encounter regularly. And I believe that, while the extremists are relatively rare, the growing acceptance of “devotees” online will trickle down into the broader social constructs around disability.

It’s widely believed that people with disabilities are viewed (in contemporary Western culture, at least) as “asexual.” The truth is more complex. We certainly do not fit the airbrushed-cover-of-Vogue ideal of beauty that is shoved down our throats. But then again, neither do all but a few supermodels on the planet; we don’t consider 99.99% of women as asexual, though. So here’s a key point: differentiating beauty (or physical attractiveness) from sexuality. To be sure, sex can be different and require a bit of creativity and patience, but most women with physical disabilities (at least, the ones I know!) have pretty normal sex lives. Nevertheless, because we can fall so far outside the norm of what is considered attractive, we (like all women) tend to conflate general beauty with sexual attractiveness, making us easy targets for people calling themselves “disability devotees” — sexual fetishists who objectify women with disabilities and reduce them to the sum of their (disabled) parts. Many women with disabilities entertain such advances, or even encourage them; when you’ve lived in a society rife with ableism it can be easy to believe that your disability defines you (and as a woman, that your sexuality defines you), and fetishists play right into that mindset.

Personal Situation

Now that I know all these things about my father I can‘t stop thinking about it (especially the new info in addition to the terrible tirade from him the day before). I don’t want to live with him anymore, but I don’t really have any other options. I need constant care and there’s no one else in my family who is able to take care of me. I know everyone says this, but he truly does love me and wouldn’t be able to take care of me like this if he didn’t. Out of everyone in my life he’s given above and beyond anyone else when it comes to my caretaking – he’s here full time and any one else is less than once a month. But I can’t stand to be around him anymore. I have so much anger. I’m angry how he treated my mother, and indirectly caused her to hurt me. But I’m angry at my mother for directly hurting me. I’m angry at my father for having such an anger problem that we had to be afraid of it. I wish I was healthy so I could just move away, but my disability is so severe that I really can’t do anything for myself and need the constant care. I don’t want to go to some nursing home – I’ve heard too many stories about that to trust it.

One time in the past when he exploded emotionally, I called a nearby shelter because it was having such an emotional impact on me. I told them about my physical situation and they said that they were not handicap accessible and referred me to another shelter. Neither shelter would be able to care for me in the way that I need it. I just don’t want to be alone in this world – it‘s not just emotional, I need a someone to physically protect me because I am that fragile. It sucks that my family sucks, but they’re all I’ve got right now and they’ve helped me in a lot of other ways.

In the news:

Via email from Ira G.: Minds Interrupted: Stories of Lives Affected by Mental Illness:

The three will be among eight Baltimoreans who will discuss the ways in which mental illness has wreaked havoc with their lives in a program called “Minds Interrupted.”

Participants wrote and edited their intimate, sometimes funny, often harrowing tales at a recent workshop that included tips on performance skills. Tickets will be sold to the show, which is being held at Center Stage, and which was modeled on the popular Stoop Storytelling series in which nonactors tell seven-minute-long anecdotes about their own lives.

The hybrid nature of “Minds Interrupted” can be perplexing: Is the evening a high-minded attempt to publicize a vexing and misunderstood social problem, or is it entertainment? And can the two categories successfully be mixed?

Five benchmarks for social assistance [Canada]

The next bold move the government must make is to stick to its guns on a comprehensive review of Ontario’s broken social assistance system.

The commitment to review Ontario Works and the Ontario Disability Support Program – made in the province’s poverty reduction strategy last December – has been agonizingly slow to get off the ground.

With the first anniversary of the strategy quickly approaching, more and more Ontarians are being forced to deplete their savings and join Ontario’s swelling welfare rolls.

As the province moves to more effectively employ resources to meet people’s needs and promote economic recovery, we can no longer afford to wait.

Student beaten to death in his Sac State Dorm Room

Scott Hawkins had Asperger syndrome, a form of autism, “that made him very obsessive about his favorite things,” his father said. He especially enjoyed studying ancient European and Middle Eastern history and was hoping he could graduate with a minor in one of those areas, his father said.

“He could go on and on about the history of Rome or the reasons that the Greek empire did this or that,” Gerald Hawkins said.

The attack was reported just before 2:30 p.m. Wednesday when one of the dorm’s resident assistants called police after hearing a loud disturbance coming from one of the suites.

How to Be a Good Doctor

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

Recommended Reading for October 26

Linkblurt: We Are Immobilised

A disabled college student is having trouble getting around campus, after someone stole his motorized wheelchair. […] Horus had locked it up and left it charging overnight. When he returned to campus, it was gone – all that was left was the charger. […] Horus’ wheelchair cost about $5,000 and that means whoever stole it faces grand theft charges.

“It’s really difficult for me to replace it. To replace it, it would take me like a year,” Horus said.

Health Care is an anti-racist issue [US]:

See, I’m one of the 25 million Americans who are underinsured. I have health insurance — pay $350/month for it — as part of a new policy that I switched to back in January when I quit my 9 to 5 to become a freelancer/fulltime writer for awhile. I’m pretty healthy and only in my thirties, but I have a family history of fibroids (like 50% of black women). So every year when I get my annual physical, I also get an ultrasound to check for those. This year the test showed small fibroids — too small to worry about, really, not even requiring treatment, though I need to keep an eye on them in case they grow. No biggie, I thought; my doctor’s efforts at preventative care had done what they were supposed to do, and detected a potential problem early enough that I can fix it easily if necessary. Health care at its best.

When two whole cakes ain’t enough arsenal…

I was leaning against a sign that read “Bus Stops Here” and jamming to some Dresden Dolls, my trusty guide dog sitting politely at my left leg. He laid down impatiently as the minute hands ticked and still no bus in sight. Then, out of what most docs wouldn’t call peripheral vision I spotted a figure stooping for a pet-by.

What is a pet-by, you ask? It’s when a knowing pedestrian sneaks in a pet or smooch or otherwise grossly boundaries-crossing form of affection at an unsuspecting service animal. Not to be mistaken with human grabbings or other forms of harassment but nonetheless devious and irritating for both animal and human handler.

Without missing a beat and sans usual snark I said loud enough for passerby to hear that “that was a shitty thing to do.” There, I said it. That was a shitty thing for person to do. Ask first, respect my answer, move on. Clearly knowing petting wasn’t allowed, ze sneaked on by, hoping I wouldn’t notice. Too bad my dog alerts me, not liking unknown human touch too much.

Where Neurodiversity Meets Feminist Theory: Part I, Part II, Part III:

Another area I see feminism and disability-rights perspectives reinforcing each other is on the question of caregiving. This might not seem like an obvious choice, since you often see feminists and disabled self-advocates at odds over this issue: when disabled people assert our right to adequate care in our own homes (or wherever we choose), feminists argue that we are also claiming entitlement to the underpaid or unpaid labor of women. (See the feminist blogswarm over Ashley X for ample evidence of this conflict).

But when you think about it, modern industrial capitalist society’s way of dealing with children, disabled people, elderly adults and every other group that needs help with daily tasks is exactly what you’d expect from a society in which women are invisible second-class citizens. When women are not valued as highly as men, women’s work is not regarded as real work, and obligations that fall under the umbrella of “women’s work” (say, care for the old, the sick and the disabled) will be more likely to be dismissed as “family responsibilities” in which government meddling is unwarranted.

Post-Trauma.net is “here to help you access information about Post-Traumatic Stress Disorder and related mental health information.” They have a list of resources available.

Disability Is …?

(Originally posted July 2009 at Feministe, three rivers fog.)

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

1.

Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?

2.

I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled”don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.

3.

Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.

4.

Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.

5.

The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision — this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.

6.

The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…

7.

The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

[Reading back, I cringe at the use of the words “straightforwardly lacking.” Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.

8.

There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.

9.

There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.

***

ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! 😉 Take it away (bold emphasis mine):

Welcome to the disability community! […]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory […]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.

Recommended Reading for October 23

Reminder! The next Disability Blog Carnival is coming up on the weekend. Get your posts in to Liz! Tell your friends!

In the blogs:

ADAPT in Atlantica, kicking ass and taking names [LONG] [US]

Their goals are, free people from being incarcerated in nursing homes, and kept in there against their will. They back the Money Follows the Person program, which means a person’s benefits are under their control rather than under the control of doctors, social workers, and assisted living facilities (who are a powerful medical-industrial complex much like the prison-industrial complex: powerful lobbyists with a lot of money at stake.) Right now ADAPT also supports the Community Choice Act, a bill which you can see and follow directly with OpenCongress.org.

I don’t think of you as Black, disabled:

I mean, seriously. That’s so naive and so painful. You are my friend. Come ON. I mean, I didn’t whiten up or lose the wheels. And it isn’t like other people don’t notice my differences, either…. They exist. We both know they exist. When we go out together you notice that I am treated differently from you; we both guess that race is the likely factor; it makes no sense to say that. What on earth are you saying? When we go out together and we’ve spent the past hour or so trying to deal with access questions — to your house, to the store, to the restaurant. What are you saying? And what the hell do you mean?

The best I can figure is that you are trying not to say something like, “In my eyes, your difference is not a barrier to our continued friendship.” Or perhaps it’s, “You don’t seem to have the usual pathologies of people with your condition, race, etc. We can continue to be friends.” Or perhaps it’s, “I’m big enough to handle whatever problems your difference brings.” But it could also be, “I don’t think in terms of these categories; it is a point of pride with me that I am not racist/ableist…” Hopefully, it is a miscommunication for, “We aren’t the same, and I like you just as you are.”

Small Victories:

I saw something in this past Sunday’s Kansas City Star that gave me a tiny bit of hope, both for our culture in general and the ongoing atrocity that is the Judge Rotenberg Center in particular: the Thayer Learning Center*, a boot-camp-style institution for “troubled teens,” which has accumulated a fairly long list of complaints of abuse and neglect of its inmates since its opening in 2002, has closed, and been sold to a Cheyenne Indian educator named Lakota John, who plans to open a new, very different kind of school on the old Thayer grounds.

The new school will be geared toward Native American young people of all tribes, with emphases on sustainable agriculture (using traditional, Native American farming methods), outdoor skills, and Native American culture, art and spirituality.

[Blog] Woman Arrested for Assault While Having a Seizure:

It should go without saying that paramedics have the right to do their job without being assaulted, and to call for help if they are assaulted. But it should also go without saying that having a seizure and struggling against (allegedly heavy-handed) care while in a state of confusion do not count as assault. And I find it difficult to imagine any circumstances under which it could possibly be okay for police to arrest someone currently in a state of medical emergency, and then not obtain medical care for her for nine hours.

Kourtney Wilson is a black woman, and it seems extremely unlikely that race had nothing to do with this case, and that a middle-class white woman would have endured the same treatment. Wilson indicates the same belief herself about racial and class bias, and her roommate Tiffini Williams suggests, “They come to the hood, see a girl on the floor, and they think she’s on drugs.” The idea sounds extremely plausible, and while it’s appalling that anyone would endure such treatment if their medical condition was the result of drug use, I don’t doubt that it’s a common occurrence.

All this week was Disability History Week in New York. I’m slowly generating a post on this (my thesis is in this area), but feel free to talk in the comments about your favourite thing that you think comes under the umbrella of “disability history”.

Lauredhel has a described-image up that’s Disability Week Fail at its finest.

Lastly, I’m using my big megaphone: Come help us generate a list of YA/Children’s lit with a character with a disability at my Dreamwidth account.