Tag Archives: barriers to access

Quick Hit — 4D Plexes

Movie poster from the Korean realease of Avatar, showing a white man on the left and his blue faced Avatar on the right, with fantasy creatures imposed in the bottom foreground. Bottom has Korean writing for title "Avatar".Our local theater in South Korea has one of the first and only 4D Plexes in the world (and it is currently showing Avatar, so I could possibly be entertained and annoyed and over-stimulated all at once! Whee!).

“The way the company finally cornered that elusive fourth dimension is by engaging all five senses: moving seats, wind, water sprinkling, lasers, and synthetic smells are all used in time with the movie.”

What are your thoughts/feelings on this so-called break through in the movie going experience? Does the thought of a moving seat and being accosted with sprinkling water and scent sound like an enhanced movie experience for you? Does it seem like it would just provide another barrier to your enjoyment?

Personally I picture myself using my popcorn bucket for something other than its intended purpose…

Have at it in comments.

A Conversation With a Pharmacist

[Scene opens with a loooooooong wait in the pharmacy before my number finally “pings” on the digital number-pinging thingy, as I struggle out of my chair, and hobble up to the pharmacist’s window, and hook my cane on the window ledge for emphasis as I hand over my ID and number slip, wincing in the fluorescent lighting on the other side.]

Army Medic Pharmacist: One moment.

Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

Me: No. But I assume it is the same as my previous one.

CP: Yes.

[I sign for one med. CP hands me two bottles.]

Me: There should be a third script.

CP: No, only the two.

Me: There should have been a vicodin script as well.

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

CP: You don’t need vicodin with a time released pain medication.

Me: With all due respect, ma’am, I usually have both.

CP: Well, there isn’t a script for it, and I don’t think you need it.

Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.

[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]

CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.

Fin.

Recommended Reading for December 1

Disability 101: The prison of ‘special’

Society expects that all people with disabilities will be loving and joyful and cooperative and that our very presence will bring inspiration and hope. That is our role. Everyone around us can feel good because of our loving presence.

Bull hockey. It is our prison.

We are not allowed to be contrary. We are not allowed to formulate an opinion that might be controversial. We are not allowed to protest. We are not allowed to complain.

No seat for disabled students on AMS Council [University of British Columbia, Canada]

Arts representative Matt Naylor explained that he opposed the motion partly because he was concerned that creating the seat would be out of line with the faculty-based system of AMS Council. “Creating any kind of non-voting seat for a specific constituency that isn’t one of the faculties has a lot of problems. We, as faculty representatives, should be the voice for all of our faculty, and we should be considering what is best for the society holistically,” he said.

“Creating special seats for special groups specifically dissuades that because they are responsible for articulating a viewpoint, and not articulating what they think is best for the entire society, so it creates a really fractious system.”

Naylor added that problems regarding representation lie in representatives’ engagement with their faculties, and not necessarily the structure of AMS Council. Councilors should make a larger effort to engage their constituents to make sure everyone’s voices are being heard.

Disability Fail of the Week

I’ve only ever used a wheelchair for a few weeks at a time, but I have made extensive use of walking aids like crutches and sticks. You have no idea of the panic that used to come over me whenever someone took my crutches away, saying, ‘I’ll just put these over here, out of the way. Just ask me when you need them.’ Because no matter how helpful and well-intentioned the person, taking my walking aids away took away my independence; my autonomy as a person. Without them I might as well have been tied to whatever chair I was sitting in. Taking my walking aids away made me dependent on THAT PERSON, and if they left the room or were busy or distracted (because this was most often said by a teacher in a classroom setting) I was left immobile and helpless. And yes, from time to time we all find ourselves in situations where we’re dependent on others, but for disabled people dependence is so often all that’s expected of them, so often the norm, that any time someone takes away some of their hard-fought-for Independence, it’s that much more hurtful. It’s bad enough when you’re prepared for it – when you’ve made the conscious if reluctant decision to trade a little of your independence for someone else’s convenience. When it’s unexpected, sprung on you because ‘those are the rules’ that can’t possibly be modified or tailored to your individual needs, it’s unbearable.

Not Taking Care Of Yourself

When you’ve been been taught thoroughly enough that you’re Just Not Trying Hard Enough by people sufficiently different that they cannot tell when you are putting in insane amounts of effort, you may start believing it. You may have trouble telling what your own limits are, much less working out a more suitable way to approach things based on how your brain really works. You may feel like you’re Not Really Trying up to the point that you collapse.

This is exactly what got my mother (not on the Spectrum, but not neurotypical either) into the state she ended up in. She felt compelled to ignore any kind of limitation–including chronic pain from undiagnosed bone cancer–until she just collapsed. Between years of getting dismissed by doctors, and refusing to see that she had any limits whatsoever–which also helped keep her from getting the care she needed–she spent years with a very poor quality of life, then died at 60. That really opened my eyes to the fact that I was running breakneck down the same path, and it scared the hell out of me. Especially since I’ve got the same kind of high pain tolerance, and my reactions are similarly atypical.

Denigrating Self-Diagnosed People Means Denigrating All Of Us

In certain circles of the Internet, it’s become fashionable to make fun of people with “Ass-burgers,” particularly those who are self-diagnosed. (I prefer to use the term “self-identified,” and will be using both terms here.) One needn’t look any further than various snark communities and “humor” pages. When called on their ableism, people who make these kinds of remarks tend to defend themselves by saying something like, “Oh, but I don’t mean to make fun of the real Asperger’s sufferers! I’m just talking about the people who self-diagnose just to have an excuse to act like a jerk.” Leaving aside the obvious ableism directed towards officially diagnosed people–you know, we “sufferers”–there are numerous other problems with that formulation, which I’ll try to cover in this post.

“Bad Cripple”

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Recommended Reading for November 3

If you have a child with Asperger’s

When I was a little girl, nobody knew the word Asperger’s. My way of being was called “weird,” “strange,” “slow” and other equally nice things. Today, we are finally getting to understand that not everybody is neurotypical, that the variety of human difference is huge, and that, most importantly, it’s ok.

Everybody on the spectrum is different. There is no single list of characteristics that would encompass all of us. Still, when I think about it, there is a whole range of things that people around me could have done when I was a child to make my existence easier. So if you have a child who might have Asperger’s, these are the things you should consider:

1. First and foremost, it is not the end of the world, a tragedy, or a reason to feel miserable. It isn’t a disease or “a public health crisis”, as some ignoramuses claim. It’s a way of being that is in no way worse or inferior to yours. I believe that in some ways it might actually be better. There is nothing in this condition to prevent your child from being happy. Of course, she will be happy on her own terms and within her own way of understanding happiness.

Transcription, because you do too much

A choice to engage in dialogue, discourse, or movement-building without making a commitment that any video used will be transcribed has a real cost in terms of cutting progressives out. A commitment to accessibility, combined with intersectional issues that make one short on time, energy, or spoons, has a real cost in terms of cutting progressives out. We can’t do it alone, people!

As a member of the progressive community, I have something I can give to help with that.

Quickhit: Pedestrian Bridge Lifts Turned Off At Night:

Oh, but it’s only at night, right? Surely all well-cared-for people with disabilities are locked up at night. So this would never be a problem. Right?

Halloween on Wheels

It seems slightly wild and bubbly-making to be thinking about partying (a little). Karaoke (OMG, yes)?? Costumes?? Yes. I’ve been wondering though about disability specific — OK, wheelchair specific costume. I mean, where is the disability/wheelchair culture that would enable us (cuz it would have to be one of us — don’t want to repeat the disability equivalent of blackface) to joke about ourselves in a Halloweeny kind of way.

Dreams aloud for a second. Well, the costume would have to embody both chair and user. I can certainly see wheel wings, but what would the scary, exaggerated, ironic wheel thing be? A flat just isn’t funny. I often refer to my wheels as my ass — could something be made out of that. Envisions wheels and buttcheeks together. Shakes head. Tries to wipe mind tv. Wheels with spikes, studs, water pistols –OK. Done before. But perhaps a starting point. How to ironize wheels?

Via Wheelie Catholic’s twitter feed: This family needs help buying an expensive device that would allow their daughter to communicate:

“The sad thing is that with a lot of these kids, you can tell the lights are on upstairs, but unfortunately, they almost become a prisoner of their own body,” said Shayna’s mother, Kym.

Spastic quadriplegic cerebral palsy is the most serious form of cerebral palsy. It’s a disease that’s difficult on both those with the disease and their loved ones — but not one without hope, thanks to new technology.

A $15,000 device, the Dynavox Eyemax, would make it possible for Shayna to communicate. An infrared light on the machine’s screen has the ability to “read” her pupils, detecting where and what she is looking at, and then speaking for her.

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.

Guest Post: Negotiating Disableism

This is a guest from from Renee of Womanist Musings.

Disableism is very new to me. My chronic illnesses not only changed my status, but forced me to see just how pervasive ableism is. It has been a huge learning process, as I have sought to reduce the ways in which my language and behaviour support ableism. I have a physical disability which has caused me to more aware of the ways in which society is structured to benefit those that are able bodied, but it has not helped me to understand the ways in which those that are neurologically atypical face discrimination. Common phrases that I used to utter like bat shit crazy, must be erased from my vocabulary. I have struggled not to say that someone is blind to something, rather that pointing out that they are unable to see or understand.

What I have learned is that ridding oneself of disableism, is a process that is not easy but so very necessary. Each time I am reduced by the assumption of another, it causes me to examine the ways in which my language or behaviour support this. It took time to understand that though I am disabled, I still exist with privilege in certain areas. I can hear, I can see, I can get up and walk if I have to, I have all of my limbs, and people do not dismiss what I am saying because they deem me non-sensical due to being neurologically atypical. As long as they are not referring to my specific disability, many are quite comfortable displaying their disabliesm, as though it does not effect me.

I have sat and listened to the complaints regarding the accommodations that those who are disabled must have to participate in society. While most will not scream and carry on about a ramp, even a small thing, like getting more time to hand in a paper at school, is enough to cause a rant about favouritism and unfair standards. Disableism occurs when people feel as though they cannot take advantage of their able bodied privileges. It occurs when people resist that a task can be completed differently to allow a greater participation.

This weekend, on the way to Destructions hockey game, I ran into an old friend. She had not seen me since I contracted my illnesses but her first comment was that she had to get herself a scooter. To her it seemed a cool toy, while to me it is a reflection of all the things I cannot do. There is a man in my neighbourhood who uses a manual wheelchair and he has commented on more than one occasion, that he wished he had a motorized scooter to get around in. Though I am hurt by the ableist comments of a former friend, my class privilege is part of what allowed that pain. When I needed a scooter to facilitate my activities, we were able to afford one.

Though I am differently abled, I am barely at the 101 level. I went through anger, denial and finally acceptance but negotiating this life is something I must begin again like a newborn babe. I have isolated myself because I viewed my body as the great betrayer, refusing to see the ways in which I could and can still participate. When someone is racist against me, it is easy to find my voice because this is something that I have lived with all of my life, whereas; disableism, even when clearly directed at me, brings about silence and sense of shame. For now I count on the unhusband to speak when I cannot and this again is a marker of how blessed I really am. Even in times of weakness and sorrow, I can count on my family to do the heavy lifting. When I need comfort, each one of them is quick to run to my aid. They may not understand what I am feeling but my pain is enough for them to intervene or try to comfort.

I have learned that disableism cannot be reduced to a simple Black/White binary. Even as I struggle against it, I perpetuate it. Just as we understand that society is inherently racist, classist, or sexist, it is also highly ableist. If this were not an absolute truth, the various barriers that block or limit participation would not exist. My task is to now unlearn that which I have accepted as truth. For me it becomes difficult when I begin to look beyond the limited experiences I have had as a differently abled person. There are issues of race, class, gender and even differing abilities to contend with. This task would not be so difficult today, had I made a conscious decision to acknowledge my various privileges in the past. I allowed my privilege to dictate what I learned and studied, thereby reinforcing the very hierarchies that I claimed to struggle against. Today I understand is that there is no universal experience and it is this very rainbow of difference that I must commit myself to embracing.

Recommended Reading for October 27

I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.

Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.

From the article:

In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.

As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients

When Simply Stating Your Truth Isn’t Enough:

What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”

It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.

Accessibility: The Soundtrack of my Life

We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.

Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.

Pain vs a Life:

Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.

And, this comment was left by Amanda of Ballastexistenz and I’m just going to C&P the whole thing because it is full of good reading material:

I’d like to present some links that could be useful further reading on these topics….

The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.

Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.

I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)

If you have links you think are relevant, don’t hesitate to email me: anna@disabledfeminists.com Please note my schedule means I may not see your email for a few days.

Umbrella Terms

My pet peeve: Labeling “othered” groups as though everyone who falls under that umbrella term has the same needs to achieve full inclusion in society.

For obvious reasons, I’m going to focus on the umbrella of people with disabilities/disabled people right now, but these thoughts have been heavily influenced by reading posts from GLTB activists about trans* inclusion (or lack thereof) and blog carnivals like the Asian Women’s Carnival and International Blog Against Racism Week.

Over the summer, while I was in the process of ranting to Don about my disappointment with our current government’s inclusion of people with disabilities, I was stopped on the street and invited to a talk. “Is it fully accessible?”, I asked.

“Oh yes,” responded the person inviting us. “We have a wheelchair ramp.”

“Do you have material available in braille? Do you have a Sign interpreter?”

“No.”

“Well then,” I snapped. “I guess you aren’t fully accessible, are you?”

(As I said, I was just ranting about this when we were interrupted with this invitation, so it was already on my mind. People need to pick better times to interrupt me. I’d like to think that normally I’d be more polite.)

There’s a certain hierarchy of accessibility that “everyone” knows about. If you have a ramp, you’re good! That this doesn’t address the needs of any number of disabled people is irrelevant – the main image of people with disabilities is that person (usually white and male) in a wheelchair.

So, in the effort to be inclusive without thinking thoroughly about what disability means, and who is included when making accommodations, we end up with situations like this one, from the comments on a post on disability at Feministe:

Willow:

Fire alarms. So it’s great and all when fire alarms have bright flashing lights in addition to the blaring sound, so people with hearing loss (like my dad) will know if the alarm goes off and be able to evacuate, right? Yeah, well, it so happens that I have photosensitive epilepsy, and the light on pretty much every alarm cycles on a frequency that triggers my seizures. So if the alarm goes off, not only do I have a seizure, which sucks in the first place, but I also cannot evacuate the building because I am either (a) unconscious and convulsing or (b) in “zombie mode” and unable to navigate the world safely.

I always feel so, so guilty about advocating for accommodations for people with epilepsy that will make the place unsafe for people with other disabilities…but at the same time, I have EXACTLY THE SAME RIGHT to be able to be there and/or be safe there. It seems as though some types of disabled people–deaf, blind, and/or in a wheelchair, in particular–are privileged over others. I lived on campus as an undergraduate, and when the school installed a new fire alarm system that included flashing lights, I was told that they would have someone “come check on me” whenever the alarm went off. Excuse me? You can’t have someone come check on the zero deaf students in the building but the three of us with photosensitive epilepsy have to wait until the fire department shows up? Not to mention the risks that come with having a seizure in the first place (such as, for example, death)?

Thoughtless accommodations, but gosh darn it, we’re “accessible”.

I know next to nothing about epilepsy, and my knowledge of deafness is limited, so I have no idea what sorts of accommodations would balance both the need for a flashing alarm and the need not to cause seizures in people. But that’s not my point. The point is that full inclusiveness, rather than going for the “easy” solution, would actually consider those needs and work them both in. It would be working with people with disabilities to design safety systems that would accommodate everyone. (Deaf people can also have epilepsy, after all.)

Grouping “othered” populations under this umbrella term allows the “general” population to decide “Oh, I’ve included a ramp, I’ve got a flashing light, and there’s braille on my elevator buttons, I’m set.” But we don’t all have those needs.

We’ve been grouped together as having the same needs both because it’s easier for the “general” population to decide they’ve “done enough”, and because we have greater strength in both self- and group-advocating when we band together. But, just like when other “othered” groups band together, things get left out, put aside, maybe next yeared.

I’m still mulling all of this over. My main activism-related issues are The Big Ones – my city is full of “just one steps” and has a serious lack of Sign Language interpreters. But right now, I’m sitting in a room with fluorescent lighting (severe migraine trigger). It looks like the fire alarm is of the flashing-light type. The door is pretty darn heavy. I haven’t seen a single TTY- pay phone on campus. And probably several other things that I’ve missed.

It’s almost like the easiest, umbrella-term solution isn’t the best one.

I’m still thinking about a lot of this stuff – I certainly don’t have all the answers. Feel free to get into it in the comments. (My schedule is such that I won’t be able to respond to anything until evening my time at the earliest, although other moderators will be approving comments for me.)