Category Archives: social attitudes

And if this keeps up, there won’t be any

My pet hate: “Crip Drag”.

Crip Drag is when a character has a disability, but the actor playing that character doesn’t have whatever disability they are portraying. Recent examples that come to mind are Kevin McHale, who plays Artie on Glee, any wheelchair-using villain you see in Doctor Who, and whoever got the role of Eleanor Perry in the Stargate: Universe episode “Sabotage”.

(And those are, of course, just shows that have wheelchair users. How many movies have you seen with a blind character who is played by an actress who isn’t?)

When pushed on issues of Crip Drag, the creators of these shows and movies often respond in one of two ways.

First, the character has the Miracle Cure Plotline, and thus they can’t have an actor with an actual disability play that role.

At first I didn’t question this much, beyond my general irritation with the Miracle Cure Plotline (Hey, television and movie producers: We have more stories than that, thanks), but I’m beginning to be very irritated with that idea the more I think about it. Amongst other things, there are wheelchair users who can (gasp!) walk. They may walk with a cane, or some other assistive device, but as long as you’re not asking them to climb several flights of stairs and then go for a run, they’ll probably be able to manage enough to satisfy the “It’s a miracle, he can walk!” plotline. I suspect blind actresses could act like they could see for the sake of a storyline, too.* It’s almost like they can learn to act like they can see, the way another actress can learn to act “blind”.

The second reason, the one that’s got me all irritated today, is the wonderful excuse that all minority groups get when they point out casting disparities: There aren’t any Big Names that will Bring In The Money who have disabilities, and Do You Know How Hard It Is To Find An Actor Who Could Do This Role At All?

The latest in a long line of insults of this nature is the casting of Abigail Breslin as Helen Keller in the upcoming Broadway production of The Miracle Worker.

For his part, the show’s producer, David Richenthal, claims that the production was unable to find a blind or deaf child actor with the star power to bring in enough of an audience to justify the show’s large budget, saying “It’s simply naïve to think that in this day and age, you’ll be able to sell tickets to a play revival solely on the potential of the production to be a great show or on the potential for an unknown actress to give a breakthrough performance,” he said. “I would consider it financially irresponsible to approach a major revival without making a serious effort to get a star.” The show will, however, be making an effort to find a blind or deaf actress to play Breslin’s understudy — but they won’t make any promises.

Gosh, I wonder why there aren’t any Big Name Child Actresses who are d/Deaf or blind (or both) and can thus play Helen Keller. Do you think it’s because there aren’t enough roles that are given to such actresses so they can develop a name for themselves? Do you think it’s because any roles that could be given to a d/Deaf or blind actress are given to non-disabled actresses? Do you think there might be some sort of bias going on in casting decisions that might be impacting this at all?

I sympathise a bit with the situation Richenthal is in. All he’s trying to do is make sure that an expensive production makes money, and Breslin has the star-draw. Apparently there are no other roles in The Miracle Worker that one could cast a name-drawing star in, and of course it’s foolish for anyone to think that the role of Helen Keller would go to an actress with a disability! What nonsense!

This is, of course, a self-perpetuating system. Disabled people are not cast in roles that would demonstrate their acting talent. They do not get the experience and the face time that the currently non-disabled do, so they can’t increase their name recognition. Then, when a role comes up that is perfect for a person with a disability, the role goes to someone else, because people don’t have a clue who this disabled person is.

The biggest actress, of course, who disproves this rule is Marlee Matlin. However, as much as I respect Marlee Matlin she is not the only actress in all of North America who is deaf. Honestly, I promise, lots of d/Deaf people do act. So do lots of blind people. My husband, who is a full-time wheelchair user, used to do Shakespeare. We are out here, and we are looking for paying gigs just as much as the next person.

Stop the Crip Drag. Stop the Miracle Cure Plotlines. And stop acting like it’s just a wild coincidence that you don’t know of any disabled actresses with the star power to bring in the money for the role of Helen Keller. It irritates me.

Please note: As with all of my posts, my schedule is such that I won’t be able to see comments for hours after you make them. My co-moderators will be approving most comments as they become aware of them, and will try and respond to any and all of them when I’m free.

* I’ve described wheelchair users as male and blind people as female because this is how they are typically cast in North American shows.

Guest Post: To Whom It May Concern

Avendya is a college student with a chronic illness.

To Whom It May Concern:

My life is not a fucking tragedy.

No, really. Yes, I’ve fought with GlaxoSmithKline today, and I’m not sure when I’ll get a medication I badly need. Yes, my knee keeps giving out, and I am barely able to keep up the stairs to my room. Yes, I’ve broken so many times in the last week I’ve last count. No, I’m not sure that I’m really well enough to manage my workload. But you know what? I’m sitting in a computer lab with my best friend, listening to trashy German pop music, and Nadia made me brownies.

These are the stories I want to hear about: not just the tragedy of suffering, not just pity and playing on able-bodied people’s fears, but my life – our lives. I want to see a fictional character who has mobility issues who isn’t a tragic figure, but is clever and beautiful and could probably kick your ass without breaking a sweat. I want to see a story where the love interest isn’t a nice (white) girl, but a woman who’s gone through hell, and is stronger for it. I want to hear stories of disabled men and women succeeding – and not “in spite of” their disability.

I choose to define my life on my terms – not just the bad days, the panic attacks, the times when no pain medication I try even cuts into the pain, but the days where I say “screw it” and explore cities on my own, take in the breeze off the Bay, buy more books than I should, and listen to Imogen Heap as loud as my iPod will go. I may have not chosen my illness, but I damn well chose the rest of my life. I don’t much care if it isn’t what you were expecting from a disabled person – this is my life, my future, and I am not your fucking cliche.

I want to see, hear, read about people like me, living their lives on their own terms. We’re not martyrs and we’re not saints – we are people. More than that, we are – we exist, and no matter how many times our needs are disregarded, our stories are erased, we refuse to let you define us.

Advocacy in Flawed Systems: Using Shackling Language to Help a PWD?

In my professional life, I’m an advocate at a non-profit agency that provides free legal services to low-income folks. I work primarily in the area of public benefits, which means I’ve done a lot of work with the program from the Social Security Administration (SSA) to assist low-income folks with permanent disabilities: Supplemental Security Income (SSI).  When I read Lauredhel’s post about the language of shackling and the problem with terms like “wheelchair bound,” it reminded me of the type of problem advocates and people with disabilities encounter in navigating the SSI application process.

Some quick background on SSI — it’s a program from the Social Security Administration, but does not require past work history or employment where the individual was paying into the Social Security system. Those programs that do depend on past work history and contributions to Social Security are termed insurance programs, where a person who becomes disabled or turns 65 can collect disability or retirement insurance based on past contributions (premiums) paid to SSA. Those insurance programs are available to anyone who has paid in, regardless of income or resources — Donald Trump and Bill Gates will both collect retirement insurance starting at age 65.

SSI, on the other hand, is considered a “welfare” program, because it is based on the income and resources of the applicant and doesn’t depend on past contributions to SSA. A person has to be very low-income in order to qualify for SSI and there are strict limits on the resources a person can have, including property, bank accounts, or other assets. If a person qualifies for SSI, they receive a maximum Federal grant of $674 a month. Some states supplement that grant – in California, the maximum SSI grant is $850 a month.

Advocacy usually comes into play in determining whether or not an individual claimant is sufficiently disabled to qualify for SSI benefits. In order to qualify, an individual must have a physical or mental impairment that prevents them from engaging in substantial employment for a period of 12 months or more. When an individual applies, they turn in medical records, forms and statements from their doctors, and forms about their work activities and daily activities and general impairments. SSA then considers and often decides that the applicant is not disabled, requiring the person to go to an administrative hearing with an Administrative Law Judge (ALJ) to determine whether or not the person is disabled.

I represent people in this process and at these hearings, where my client’s goal is to convince the ALJ that they have a disability that prevents them from working and therefore should get SSI benefits. For many of my clients, SSI money is their only possibility for ongoing income that would allow them to keep their apartments, buy food, pay for medications, and otherwise survive. This means that convincing the ALJ that they are sufficiently disabled is of paramount importance to the clients.

And here’s where the dilemma arises. When evaluating clients, ALJs are not interested in nuance. They want to see a claimant whose disability limits or impairs their functioning so significantly that its a foregone conclusion that person will never be employed again. Any functional abilities a claimant has – regularly visiting with friends from church, doing their own grocery shopping or food preparation, ability to use public transportation – makes it more likely that the claimant will be found not disabled, so all of those abilities have to be excluded from the discussion or explained away as insignificant abilities. An ideal claimant would be someone in a coma.

This means that when I am advocating for an individual client, I need to ignore any and all functional abilities the person has while highlighting and emphasizing each and every functional limitation. I also need to show that this person is so affected by their disability that they are totally incapable of working. And it is when I am framing these arguments and drafting these briefs that I feel very uncomfortable. I find myself writing paragraphs like this:

Ms. R  is a 56 year old female who suffers from significant and severe physical and mental disabilities, including depression, anxiety, chronic back pain and headaches, and diabetes. She has lost interest in all activities, is so forgetful that she cannot leave the house for fear she will not be able to find her way back, and feels so useless and such a burden to her family that she thinks constantly of death and dying.

All of those things were true about Ms. R. But she also told great stories about how she used to hike in the Sierra Nevada Mountains and taught us how to make Cuban coffee and was an amazing singer. She was a great mother to her adult son, who loved her beyond measure and looked at her with adoration while she told us stories. But none of those characteristics were relevant to the SSI determination and if they’d been included in the brief, the ALJ would have been less likely to approve her application.

So when I’m writing a brief, I find myself playing to those stereotypes of restriction and limitation in order to fit into the ALJs pre-conceptions of what a person with a disability looks and acts like. I have no doubt I’ve used the term “confined to a wheelchair” in a brief. I wouldn’t be surprised if I’d described a claimant as “totally dependent on outside assistance for even basic functioning.” And I’m horribly conflicted every time – I’m advancing my client’s immediate goal of obtaining benefits that will allow them to stay housed and fed, but I’m perpetuating a negative stereotype of people with disabilities and reinforcing the flawed perspectives of the ALJs.

Because my ethical obligation to my client requires me to zealously pursue their goals of obtaining benefits, I’ll swallow my concerns and write a brief that makes them look as pathetic and incapable and needy as I possibly can. But this tension between serving the needs of individual clients while reinforcing a larger system of thinking about people with disabilities this way is a difficult one.

[Note: like the rest of my policy posts, this is entirely US-centric. This description of SSI regulations and requirements is not intended to be a guide for applicants, just a broad overview for purposes of this discussion. Do not rely on this information in seeking benefits.]

By 4 November, 2009.    activism, class issues, language, social attitudes   

Getting It Wrong: Rate Your Students and Ableism

[Possible trigger warning for upsetting and ableist language]

As some of you may know, I am a graduate student getting my Master’s Degree in Women and Gender Studies. I currently have vague career aspirations of getting my PhD or at least remaining in academia in some capacity; my academic interests primarily have to do with feminist disability theory and the body.

I was an undergrad when I discovered Rate Your Students, a blog for college professors and TAs to rant, with anonymity, about the wonderful world of academia–including its apparent hordes of clueless undergrads. I can’t quite remember how I stumbled upon it, but I found it very refreshing. I was probably what the RYS denizens would call a “special snowflake”, or “snowflake” for short–that is, an overeager student who is convinced of zie’s own specialness (however, my low self-esteem may negate such a categorization)–but I found the site a welcome break from dealing with fellow undergrads at my school, many of whom, I felt, fit the “snowflake” categorization perfectly.

Given my disability and resulting limited energy, during this time I was  privately contemptuous of those whom I percieved to be slacking and getting away with it, particularly when I was assigned to work with them on group projects or in discussion cohorts. Inevitably, I would be the one who led the group in discussion–even when I had been the only one to have done the reading–or the one who would do most of the “group” project planning and resulting work. I do not say this to toot my own horn; this information is meant to be context for the reasons that I started reading RYS in the first place.

After this week’s posts on accommodation(s) for students with disabilities, however, I am seriously rethinking my earlier enthusiasm for the site. One professor sent a query to the other readers of the site:

How do you teach a student…who clearly has severe intellectual developmental issues? How do you make sure the other students aren’t held back? What if your course is a small seminar course, not a large course? You have to spend a lot of one-on-one time with one at the expense of several. Why doesn’t the university provide resources for you and this student?

Am I bad teacher for not knowing how to deal with this? Or for not wanting to?

The responses are a motley bunch (the [+] markers denote different responses from different folks), ranging from the awesome to the somewhat reasonable to the awful:

Anyway, I don’t think too much of students who come to me with a letter demanding time-and-a-half on tests. Nor do I pity the poor fucktards when I think of their asking a future boss for time-and-a-half on a project. There are some students who are truly disabled, and truly need accommodations. But ADD is a sad joke. It puts us at the beck and call of every spoiled tool whose parents can find a quack to label the kid as ADD.

I am an academic. I am also a person with disabilities. I know, furthermore, that “difficult” students exist, and in some cases, universities do not provide clear policies for faculty when dealing with students with disabilities. Professors, however, are not usually assigned to be the disability police, and with good reason (see above). From the glut of postings on this topic, the message that I am getting–as a person with multiple disabilities, both physical and other–is that I do not belong in the academy. People with severe emotional or mental health issues, apparently, do not belong in the academy because they freak out the “normal” folks. Furthermore, if I choose to disclose my disability to faculty, I may be subject to disbelief and doubt, due to their past experiences with disabled students. Hell, someone might even rant about me on RYS if I piss them off enough!

I respect the fact that RYS is a site for professors to anonymously vent; all of us need those spaces. Some of us, however, are both hopeful professors and people with disabilities.  Privileged displays of ableism like the above are asking some of us to side against our own, which many of us cannot do.

Invisible Illness and Disability Bingo 1.0

Author’s note: This is a revised version of a bingo card that I made some time ago.

While I don’t feel like I should be required to justify the lowermost right square, there was some confusion and pretty ooky pushback when I posted version 1 on my own blog. I’ll explain that square anyway, for CMA purposes: I am aware that pot works for many people with chronic pain, and personally have no issue if people other than myself use it. I’m an advocate of finding what works for you; whether it’s a pill, plant, pilates-esque routine, or something else, your course of pain management should be your choice.

What I am referring to with this bingo card — as a whole — is the commonplace, rather irritating tendency of some able-bodied people to suggest — without knowing about the medical history of (or, indeed, much about) the person they are “trying to help” — remedies or treatments that may be totally inappropriate for that person, due to various (personal) reasons. In short, what works for you may not work for me, and vice versa; how I wish I could have articulated this to the folks who have “helpfully suggested” that I smoke pot or obtain other illegal “meds” to help with my pain!

Okay, explanatory note/rant over. Onto the bingo card! I hope you all have your chips ready.

Special thanks to Ouyang for suggesting the “Diet and Exercise!!1” free space.


Text translation: card has white text on a black background. Title (in white) reads, “annaham presents: Invisible Illness Bingo 1.0,” followed by “Now With Straighter Lines” in red:

First Row, Square #1: All that’s keeping you from being healthy is a positive attitude!

First Row, Square #2: My ex/friend/co-worker had that, but he/she was just a hypochondriac.

First Row, Square #3: Maybe if you lost weight/found a man/read The Secret, your problems would be solved.

First Row, Square #4: Why can’t you just suck it up, get out of bed, and find a job like the rest of us?

Second Row, Square #1: Lucky! You get to stay in bed all day.

Second Row, Square #2 (middle square): Free Space/DIET AND EXERCISE!!!11

Second Row, Square #3: You don’t look sick/you’re just complaining too much

Third Row, Square #1: Obviously, you get something out of being sick. Otherwise, you’d get better!

Third Row, Square #2: If I haven’t heard of it, then it doesn’t exist.

Third Row, Square #3: But I went through hard times too, and I got through it. Let’s talk about what a great person I am.

Third Row, Square #4: You have it so much better than some people! Think of the starving children in Africa…

Fourth Row, Square #1: Let go and let God/Power of prayer/God is punishing you

Fourth Row, Square #2: You just want an excuse to be lazy and have people pity you.

Fourth Row, Square #3: Why haven’t you tried crystals/vitamins/other dubious “cure”? IT REALLY WORKS!!!

Fourth Row, Square #4: Smoke pot/take illegal drugs. It will totally take care of your pain, man!

Also posted at Ham.Blog

Recommended Reading for November 2

It’s my favourite Monday of the year! The clocks fell back an hour for most of Canada last night so I feel like I’m up extra early and have lots of time to accomplish things today!

Not that this actually works out in practice.

What I Want To Write To Abled-People But Don’t:

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don’t know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don’t mean themselves. I’ve found what they said to be true. My suggestion is to at least try, because often you’ll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone–about the kids’ school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don’t know me, make the same small talk with me as you would with anyone. If you already know me, I’m truly the same person. If you’re feeling awkward about wheelchair use, work on overcoming that; I don’t feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won’t make eye contact, say hello, or speak to me anymore. If you’re so concerned that you’ll be rude that you’ll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

The Knitting Community Has Assholes Too:

So I posted an innocuous, friendly sort of post in the large and voluble lace-knitting forum on Yahoo about knitters with disabilities which keep them from reading charted patterns. Correction–the knitters themselves had brought up their experiences and frustrations, and after some back-and-forth on the subject, I thought, “Hey, let’s see if anyone’s willing to send polite notes to publishers, en masse, to bring the problem to publishers’ attention.” Cos hey, I love my charts and I find following written instructions really difficult, but that doesn’t mean that knitters who can’t read charts due to a disability should have to miss out on the fun.

Well goddamn, you would not believe the sheer hostility that erupted. One woman in particular posted a rambling screed about how her mother had polio, but “overcame” her disability and got angry when people offered to help her; she then claimed that the knitting world didn’t need to be “fixed,” and that she was being discriminated against. I’m not sure how anyone is discriminating against this able-bodied person; did a brigade of visually-impaired and neuroatypical knitters march up to her house and forcibly steal her charted patterns? (Given how hostile her response was, I think I’d enjoy seeing that!) Language about “preferences” (a very different thing from a disability) and defensiveness about how it’s okay to like charts proliferated in the discussion. If suggesting that all knitters should get to enjoy their craft is such an offensive idea–if the idea of someone else sharing the dignity means, to these people, that there’s suddenly not enough dignity to go around, as if dignity was some kind of limited-quantity resource–then yes, the knitting world does need fixing. Then again, the world in general could use a little fixing, by those standards.

Denise Handicapped:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

So they go on their date. As Larry pushes Denise up to the restaurant’s entrance he says, “If we’re going to have a second date, you’re going to have to get an electric chair. I’m not doing this again.” Cue symphony of tiny violins.

In the news:

House bill likely to include long-term health care [US]

House health care legislation expected within days is likely to include a new long-term care insurance program to help seniors and disabled people stay out of nursing homes, senior Democrats say.

The voluntary program would begin to close a gap in the social safety net overlooked in the broader health care debate, but it must overcome objections from insurance companies that sell long-term care coverage and from fiscal conservatives.

Female veterans complain of less pain than men [Warning: This is a mainstream media discussion of a medical report.]

Female veterans of the Iraq and Afghanistan wars are less likely to complain of painful physical conditions than their male counterparts, according to a U.S. study.

The study of more than 91,000 U.S. veterans runs counter to what is seen in the general population where women typically show higher rates of chronic pain conditions, including migraines, fibromyalgia and persistent abdominal pain.

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.

“Please, Keep Us Updated On Your Health”

How about not?

Truly, this is probably one of the most annoying things which people say to me. Well, ok, I exaggerate, but people have been saying it a lot lately so it’s on my mind.

I’m a rather private person. I don’t think I’m that much more private than most, but as a general rule, I believe that my health is a personal matter. And that my body is my business, which is yet another example of how feminism and disability intersect, since women and people with disabilities have a long history of lacking bodily autonomy and getting serious pushback when they dare to try and assert it. My health, and my body, are between me, and the people who provide me with medical care. I may provide select people in my life with relevant information about my health when it becomes apparent that the information is necessary or important (for example, when I worked for other people, sometimes I needed to request accommodation in the workplace). But this is not an open invitation to these people to ask me questions about my health.

Yet, they seem to think that it is. And this is one of the biggest problems with owning your disability status when you have invisible disabilities. When you out yourself as a person with disabilities, people are apparently under the impression that this means that you want to talk about the specifics, that you welcome their suggestions and helpful hints, and that you would like nothing more than to discuss detailed and highly private health  matters in public. They assumed that you were like them and now that your dirty little trick has been revealed, they think it entitles them to information about The Other.

Truly. I have had people talking in very loud voices in public settings about intimate health matters. One might think that even if these people think that the desire for privacy does not apply to them, they might think about the fact that broadcasting information to complete strangers is probably not desirable. Especially in a small town, where information travels fast and often gets garbled, which means that I’ve heard a lot of varied, wrong, and highly entertaining variations on my disability status and health issues. (My favourite story: I had an aneurysm while on a dirty weekend at Tahoe with a cop. People, you cannot make this stuff up!)

Sometimes complete strangers apparently think it’s ok to act like they know all about me because they’ve heard something through the grape vine. Who feel that it’s appropriate to, say, walk up to me in the supermarket and say “I heard about…the diagnosis” or “how is your new medication working out for you,” or “you know, my sister’s son had [whatever they think I have], and he grew out of it!” And I must stand there, politely gritting my teeth while someone I don’t know is basically assaulting me in a public setting. And I can see everyone’s ears perking up as they freeze over the bananas and stop squeezing the oranges, because they want in on this juicy gossip.

The thing about invisible disabilities is that a lot of them carry stigma. I have no problem with being very open about my asthma, because, you know, it’s a no-fault disability, and it’s a pretty visible one at times. Some people just…get asthma. And it’s unfortunate that this happens, but no one makes a value judgment about you when they hear that you have asthma. Although they will tell you that someone they knew grew out of it. If I had a dollar every time someone said that to me…well, I wouldn’t be worried about my health care expenses, that’s for sure.

But, other conditions which I have? They carry stigma. One way to address stigma and to fight it is to come out, but that’s not an option for everyone. And I need to think about the fact that I live in a small town and I will probably live here for the rest of my life, and I would rather not be branded for life by the judgments of others. I need to think about the fact that people are routinely denied things like bank loans on the basis of disability status, and I need to think about whether or not I am ready for that to happen to me because the bank manager knows exactly who I am. I need to think about what will happen when I need to rent a new home and the landlord turns me away because of garbled information about my  health and personal history.

And I need to be able to assert my own autonomy.

Someone I don’t know very well recently asked me to “keep me updated on your health,” and I had the audacity to say “you know, that’s really a private matter,” and this person looked at me as though I had shat on ou mother’s grave while doing the tango.

Yes, I, the person with disabilities, chose to exercise autonomy over my body and private medical information by telling someone that my health status was not this person’s business. And I became the bad person. Just as women who inform people that their bodies are private are told that they’re being unreasonable.

Which brings me to my final point; I can’t help but notice that people somehow always manage to turn things back to them. They don’t care about my disability status or health; if they did, they’d already know about it. What they care about is information, the control of it, and the opportunity to exercise power over me. And this is, perhaps, what I find most infuriating about “please keep me updated about your health.” People get angry that my private information is not relevant to their lives, and thus, they make me into the enemy when I suggest that they should go take a long walk off a short pier and enjoy the swim.

Law & Order: “Dignity”, Worth, and the Medical Model of Disability

As a feminist, I am pro-choice. Abortion should be safe, legal, and accessible.

As a feminist, I look at more than whether single, individual women have access to abortion. There is a much broader reproductive justice framework that must be scrutinised, critiqued and repaired so that all women have access to informed, supported reproductive choices.

Women who have been denied informed, supported reproductive choices in the past include more than the wealthy, non-disabled white women who dominate pro-choice conversations. Marginalised groups are as likely to be fighting for their right to reproduce as their right not to – people of colour, trans people, lesbians, and of course women with disabilities, who have been denied sex education and forcibly subjected to contraception and sterilisation for centuries.

To that list of marginalised groups, of people who are often denied truly informed and supported choices, we can perhaps add – people pregnant with fetuses who may have a prenatal diagnosis of a disability.

As a feminist, I believe that we can have the abortion-rights conversation without marginalising, othering, and disparaging people with disabilities. I believe we can talk about abortion within that broader framework of reproductive justice, and that we can confront the ableism that creeps into some abortion-rights conversations head-on. This takes effort; we must think clearly, write carefully, read closely.

Yes, some forced-birthers will try to appropriate our words for their own ends. We need to remember that they are responsible for their own misreadings and misrepresentations, not us. We need to not let their twisted, misogynist agendas control what we say. They must not stop us from speaking out.

Law & Order, “Dignity”

So, guess what I did today? I swallowed my intense dislike of popular TV crimeporn show Law & Order, and watched episode 20×05, “Dignity”, in which a bloke murders a doctor who provides abortion services, to “save” his daughter’s fetus, diagnosed prenatally with Ehlers Danlos syndrome.

Before we start, a little background on Ehlers Danlos syndrome (EDS). EDS is not one condition; it is a heterogeneous group of conditions caused by differences in genes coding for collagen proteins. Collagen is a key ingredient in all connective tissue, including skin and ligaments. The commonest EDS types manifest primarily as joint hypermobility or as very elastic skin. EDS often goes undiagnosed until adulthood, or completely undiagnosed throughout life.

There is a very, very rare variety of EDS called dermatosparaxis which involvs fragile, floppy skin and easy bruising; there have been ten published case reports of this variety worldwide. Within that group, the severity is still heterogeneous – check out this blog Sense and Disability, by a woman with dermatosparaxis who has studied at Oxford and backpacked through Europe.

Let’s have a look at the episode. I’m not going to go into a detailed recap; you can check one out here at All Things Law & Order: “Law & Order “Dignity” Recap & Review”. The case is a ripped-from-the-headlines story with many details closely resembling the terroristic murder of Dr George Tiller, one of a half-handful of late term abortion providers in the USA. The show adds a number of details that appear designed to showcase forced-birther ideas, such as the invented detail that the slain doctor had in the past murdered a live newborn. The murderer’s defence argument centres around the idea that he is trying to save a fetus from the abortion that his daughter has scheduled.

The fetus in question has apparently been diagnosed with Ehlers Danlos syndrome (EDS). At first, oddly, we’re told that it has “Fragile Skin Disease”, which typically refers to a completely different set of keratin-related conditions, epidermolysis bullosa. The show does not elaborate on how the EDS was supposedly detected (prenatal gene testing is not routine), or the fact that EDS is heterogeneous and that people with EDS vary widely in phenotype, or, well, any other facts, really. We just get this:

[clips, transcripts and a lot more discussion are below the cut]

Read more: Law & Order: “Dignity”, Worth, and the Medical Model of Disability

Ableism and the Aussie Battler

I want to talk about how Australia’s ideas of the ideal Australian exclude people with disabilities. But first I have to explain a little about the Australian national myth.

The ideal Australian figure is known as “the Aussie battler”. Essentially this is an ordinary man working hard to get by and support his family without complaining. I guess it’s a bit like “the little guy”. I’m going to paraphrase how Queen Emily explained it (as we discussed this on Twitter with its 140 character limit): ‘It’s an idealisation of (implicitly working class) struggle, self-sufficiency. You work hard and get paid fairly – but not well. I think it’s different from the US rags-to-riches story, because it doesn’t imply that hard work produces social mobility.’

I’m not sure how to convey to you how ingrained the idea of the battler is in the Australian consciousness, but it really, really is. It’s everywhere from our popular culture to our political discourse. Our previous Prime Minister, John Howard, drew on it a fair bit. (In fact, in 2007, US President George W. Bush referred to him as a battler at the Asia-Pacific Economic Cooperation forum, a moment which caused a few raised eyebrows.) Our current PM, Kevin Rudd, doesn’t do so quite so much, but it is still very noticeable.

There’s a whole culture around cheering on the underdog and tall poppy syndrome (tearing down high achievers). But the Australian idea of the underdog – the “Aussie battler” – isn’t really who is at the bottom of the kyriarchal pile. If white, abled men represent the struggling Australian, that’s a pretty warped idea of hardship. It’s not about valuing the real battlers. A lot has been said about the racism and misogyny coded in the battler legend, and I could say a lot about the assumptions regarding family (structure); today we’re talking about the ableism.

The Aussie battler ideal is about a person working hard to get enough money for the family to live on. Every feminist knows how problematic it is to set up paid work as the only sort of real work. After all, women’s work in the home, raising children, running the household – the second shift – has been devalued in Western society as a matter of course. It also is very ableist. Many disabled people cannot fulfil the paid work requirements to be a battler, or not consistently, because those standards are designed to fit abled people, to privilege what they can do over what people like us can do. It would seem that only particular kinds and amounts of contribution to family and society will do. Setting up “typical” as “best” is just about always problematic, and there is no exception here.

And if you must be disabled, there’s a battler’s way to do that, too. Complaining is not the Australian way, you must be stoic and soldier on. Never admit that you need assistance, because not being able to do everything on your own is weak. Having to rely on anyone else is a matter of shame. If the Aussie battler must be self-sufficient, and a source of strength and support to those around them, then what of those people who require that support? The Aussie battler idea devalues those the battler is actually working for: wives, children… disabled friends and relatives, perhaps. It’s not that those people are valuable and worth fighting for, it’s that the battler gets to prove their toughness and reliability. For whichever group, it doesn’t leave a lot of room to just be human: needing help, giving help, everyone deserving of love and support regardless. That’s what archetypes do: set up impossible tasks and cut out those on the margins. It’s okay to lend a hand to a mate as a one-off, but you better get back on your feet straight away. Assuming you have that hand, and you are able to get back on your feet, of course (oh, bodily metaphors, how much you do assume).

In an effort to keep this less than novel length, I’m not going to explain any more about Australia’s notions of ideal citizenship, but if you’re interested, you can try looking up larrikins, the ANZAC spirit and mateship.

Do you have specific cultural features like the battler ideal that make life a bit tougher when you’re disabled?

By 28 October, 2009.    social attitudes  ,  

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