Category Archives: normality

The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

Last week s.e. smith and several other members of the disability community, including Alice Sheppard (a dancer with AXIS wheelchair dance company), TK Small (a lawyer and disability rights activist), Christine Bruno (who works with the advocacy group Alliance for Inclusion in the Arts), and Maysoon Zayidd (an actor and comedienne with Cerebral Palsy).

came together on the WBAI show The Largest Minority to discuss Glee and depictions of disability in popular culture. This particular episode of the radio show was inspired by s.e.’s post, A Very Glee Christmas.

You can download directly from their site: This is a direct download link to save-as. Alternately, you can play it on the WBAI site by going to their archives and scrolling down to Shared Timeslot Wednesday 10pm to 11pm on Wednesday, December 22, 2010 10:00 pm. Alternately, you can read the transcript.

The actual show itself doesn’t start until 3:52 in to the program slot.

It’s taken me a while to get the transcript of this done, for which I apologize. I did mean to get this up far faster than I did. I also should note that I had some difficulties always identifying who was speaking, and there are points in the program where the show’s audio cuts out terribly and I’m unsure what they’re saying.

Read more: The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

It’s Okay Not To Holiday

A whole lot of people are celebrating holidays right now, and it seems like the holiday season is a source of stress for many of those people, particularly people with disabilities. Stress about attending family events and dealing with judginess or inaccessible houses. Stress about being required to go to holiday parties for work. Stress about being forced to observe religious traditions you don’t follow in the interests of not causing ‘a scene.’ Stress about hosting events and cooking and making sure everyone’s happy. Stress about buying presents. I see the stress everywhere; everyone I talk to is unhappy, everything in my RSS is exploding with holiday-related stress, and it seems more like the season of misery than cheer for a lot of people.

Maybe that’s not the case for you! Which is awesome. If you love the holidays and look forward to every single aspect and are just bursting with excitement, well, you  might not like this next part very much: I don’t celebrate the holidays. I don’t buy presents, I don’t send cards, I don’t put up ornaments, I don’t attend parties, I don’t cook mammoth amounts of food, I don’t travel to be with family. This is in part because I’m not religious; we celebrated Christmas when I was a kid but it was purely secular and as soon as I grew old enough not to resent the fact that everyone around me was getting presents, we stopped. The last holiday event I attended was a Passover Seder a bunch of friends hold every year.

But it’s also because I hate social gatherings, I hate the fraught social minefield of handling cards and presents and things, I can’t deal with large crowds of people and Smells and all of the things that are usually present. So I pretty much check out during the month of December, when the United States is caught in a flurry of Christmas, 100%, all the time. People seem shocked and horrified that I don’t celebrate even a little.

And, you know, a lot of people seem to view me with pity when they find out I don’t have plans for Christmas dinner or what have you. They seem to think that I must be really sad about this, about ‘not having anyone to celebrate with,’ and I’m usually deluged in invites to attend events, which I politely turn down. It was only very recently that I realised very few people are willing to come out and say something I think is pretty important:

It’s okay not to holiday.

If you don’t want to celebrate at all, for whatever reason, that is okay. It’s also perfectly okay to decide that you want to limit what you do during the holidays, again, for whatever reason. Maybe you have limited energy and you want to budget it to do something you care about, like lighting the Yule Log, and you’d like to politely turn down things that will be drains on your energy. Maybe you just plain don’t want to go to the holiday party where everyone will stand around drunk and talk in increasingly loud voices about nothing in particular. Maybe the thought of dealing with family makes your hair change texture and you really just want to spend a few quiet days at home, perhaps alone, maybe with partners or friends. Whatever. It’s okay.

You don’t need my permission for any of those things, of course. But I know that sometimes I find it helpful to be reminded that it is actually okay to take care of myself. I can request or refuse things and not explain them. I can make choices designed to protect myself, whether it’s from really indifferently cooked turkey or from relatives I can’t stand being around. And you can do that too; you don’t owe anyone your time, or your energy, or anything else.

Writing in November, I talked about the pressures many people experience around food and the holidays:

It’s hard, I know. There is no one easy solution; not all of us have the choice to opt out of obligations, not all of us can speak up at the table, not all of us have a choice about where we eat and when and how and what is in front of us. There may only be small, small things you can do to assert your space and your right to exist, and I’m not going to tell you what you should or shouldn’t do. I’m not going to say ‘just don’t go to holiday dinner if you don’t want to’ because I know it’s not that easy, and I know you’re a grownup, and you can make that choice if you want to. But I am here to tell you that I support you in whatever choice you make, in any choice you can make that will increase your happiness levels at a time of year when things are often grim.

You are allowed to do whatever small things you need to do to make the holidays, whether you celebrate or not, easier for you. That might be politely suggesting that you cannot host the family holiday party this year even though you really want to because it eats a lot of energy. It might be offering an alternative to something you cannot or do not want to do; ‘gosh, I would love to attend dinner at your house but I think it will be a little overwhelming, why don’t just you and I go out for lunch the day before to catch up?’ It might be asking your family to please respect the fact that your identity is not up for debate or discussion. Whatever small or large action you decide to take, remember that you, too, are a human being with boundaries and limits and that you deserve to be treated with respect.

By 17 December, 2010.    life changes, normality, othering  , ,  



5 Ridiculous Big Pharma ads

I have an ongoing peeve that relates to medication and social attitudes surrounding it: often, for some people on various sides of the political spectrum, trashing Big Pharma translates into trashing people who use prescription medications at all, for a variety of health conditions — especially for chronic conditions, both of the mental health and physical varieties. As a woman with multiple disabilities — a few of which require me to be on medications manufactured by Big Pharma (OOOOOH, SCARY) — I am not, how shall I put it, too excited about this. It’s really nice that stereotypical Extremely Naive Hippie Liberals and Rugged, Anti-Government Bootstrapping Conservatives can, theoretically, bond over how much they mutually hate those of us who take medications for legitimate medical reasons — but even those of us who, normally, would like and/or encourage all of this talk about “building alliances across the [political] aisle” have limits.

In short, there are a lot of things for which you can take Big Pharma to task without also treating the people who depend on these medications like total shit. One of these things is advertising and direct-to-consumer marketing, at which Big Pharma seems to be really quite good! And by “good,” I mean totally ridiculous. Let’s take a look at five different ad campaigns that should never have left a pitch meeting, much less been made with gargantuan budgets, professional actors, and voice-overs that calmly inform the viewer/listener of possible side effects.

5. Cialis: Yes, the one with the make-out music in the background and the couple sitting side-by-side in the bathtubs out in a meadow or something. Why is it so difficult for these folks to find a tub big enough to fit them both?

4. Uloric: Granted, this one may not be as ridiculous as some of the others on this list, but the visual of a dude carrying around a giant beaker of green liquid (which looks suspiciously like it should be in some sort of fancy alcoholic drink that costs upwards of $7) is pretty bizarre, as is the voice-over that helpfully informs viewers that side-effects may include flare-ups of the very condition that Uloric is used to treat. This might be the entire point of the ad, though; since Uloric is a medication intended to help with Gout symptoms, wouldn’t it be more accurate to have the guy wear shoes to which giant beakers are attached? Perhaps we could see a live-action depiction of the 16th-century drawing included in the Wikipedia article on Gout, instead of a guy with a big beaker of neon-green energy drink? That would be awesome, and might get the Gout-is-horribly-painful-and-this-medication-could-help message across in a way that actually makes sense.

3. Lyrica: Every time I see this one, I want to yell at the TV, particularly when the one featuring the classy middle-aged lady who bakes bread has somehow made its hellish way into my precious rerun of Dirty Jobs or another show that I don’t like to admit to enjoying. The actress in this ad pronounces “Fibromyalgia” like it’s a seasonal root vegetable or something (like “FYE-bro-MY-al-GEE-AH”) and all I can do is give the television my most hateful death glare. Oh, and even better is when she says that “My doctor diagnosed it as FYE-bro-MY-al-GEE-AH muscle pain,” and I want to scream, “Lady, IF YOU KNEW what fibro was actually like, you would not be saying that. You would probably be in too much pain on some days to do very much.” Or baking loaves of crusty bread en masse, for that matter. As someone who’s dealt with fibro for the past few years of my life, I only wish I had enough energy to bake many loaves of bread, like the woman in this commercial. Sweet, delicious carbs might help my pain, or at least give me something to focus on other than constant pain and fatigue.

2. Cymbalta: My personal favorite moment is when a kid runs up to hug the woman (presumably a relative?) and the camera focuses on her face, and she just looks so sad that the explanation just has to be terrible acting (or depression, according to the good folks at Eli Lilly). Depression’s symptoms are much, much more complex than walking around looking like the emoticon for sadface [🙁], but you wouldn’t know it by watching this commercial. I think someone should make a parody of ads like this, except that some other person approaches the woman, tells her to “Snap out of it,” and then the woman gives that person the finger–or, more accurately, gives them the 😐 face, because that is what certain aspects of depression make you feel like doing. You’re not only sad all of the time, but often you feel too hopeless to respond to people’s asshattery when they feel the need to comment on your depression and/or tell you that you Just Need To Buck Up.

1. Viagra (“Viva Viagra” spot): Truly the stuff of nightmares. The first time I saw this ad, I was awake at 3 or 4 AM due to pain (go figure, right?) and thought I was hallucinating when the opening chords of “Viva Las Vegas” started up in the opening seconds of this ad. I was, at first, confused as to what that particular song had to do with a medication used to treat erectile dysfunction. And then four middle-aged dudes–one playing a guitar–appeared on the screen and started to sing “VIVA VIAGRA!” to the tune of a song that most people associate with Elvis Presley, or any buddy comedy that has some sort of drunken Vegas montage. If you’re sure that this one won’t give you nightmares, I urge you to find it on YouTube, because it must be seen to be believed. Unfortunately, it’s been replaced in recent months with 30 seconds of yet another middle-aged white dude driving a car around in the dark. The penis = car association makes more sense than hanging out with your best buds and singing about Viagra, I suppose, particularly if you know anything about psychoanalysis.

Readers, what are your least favorite Big Pharma ads, and why? Short descriptions (and links to videos, if you have them) can be helpful for people who may have not seen the ads; please include them, if possible, so that we may all share in the unintentional hilarity.

University Kicks Student With Down Syndrome Out Of Classroom; Other Students Protest And Are Ignored

I cannot imagine being told, 3/4s of the way into my first academic term, that my mere presence in the classroom “resulted in a disruption of curriculum delivery and interfered with the teaching and learning environment for the instructor and other students.” Especially with no prior warning, and especially when all 19 of my fellow classmates insisted that this was untrue.

Meet Eliza Schaaf, a 20 year old university student with Down Syndrome. In September she began taking a ceramics class at Souther Oregon University, with the support of her family. She was signed up as a full student, and registered with her university’s disability office. (Part way through the year she was required to be re-registered as auditing rather than a full student.) According to the blog the Schaaf family has set up:

Out of curiosity went to the SOU Disability Resources Office and made appointment to learn what accommodations are available to student with disabilities. None seemed relevant or needed. Did discuss the personal assistant option.

From what I’ve been able to gather from various news reports, Eliza’s mother, Deb Evans, was her personal assistant in the classroom, having signed a contract. This newspaper report at the Mail Tribune points out that the one-size-fits-all model of providing accessibility accommodations didn’t really work in this situation: personal assistants in the classroom were presumed to be for people with physical disabilities, so Deb was limited to setting up Eliza’s workspace for her. In the timeline of events, the Schaff family acknowledges that Deb was asked to not speak to Eliza or the other students during class time, and describes Deb as leaving the room and letting Eliza get any assistance she needed from another student who also signed a personal assistant contract.

Without any warning whatsoever, Eliza received a registered letter from the university informing her:

“At this time, Southern Oregon University does not offer a program specifically designed to provide specialized learning opportunities for students with intellectual disabilities. We have determined that even with the support of the accommodation(s) available at the post-secondary level, you are currently not otherwise qualified to meet the academic standards necessary to participate in this course.”

And, you know, I get that. I think it’s shitty, but I can understand that. Except for one minor problem:

Eliza didn’t develop Down Syndrome spontaneously half-way through October. She had Down Syndrome when the university agreed to accept her as a student, and when the Disability Accommodations Office agreed they really had no assistance they could offer her, and when the university agreed that her mother could be Eliza’s personal assistant, and when they told Deb Evans that she could sit in another room during the class.

The other problem is this: According to the letter Eliza received from university administration (You can read it here (PDF) transcription.):

Based upon our interactive process and classroom observation, we have conluded that there are no appropriate accommodations that would allow you to engage with the course material at the cognitive level necessary and required of university-level students. Specifically, we have made the following observations during your participation in the course….

Except, according to students actually in the class, no one observed. According to Mollie Mustoe, a student in Eliza’s class and one of the people behind the very vocal outcry about this situation::

She said what bothered her most was that the administration used students in the class as a reason to withdraw Schaaf without consulting those students.

“No one from the administration observed the class, and the administration never had a dialogue with the students about what we felt,” she said.


“She worked almost as independently as me,” Mustoe said. “What she couldn’t do on her own that’s what the personal assistant was for.”

The situation seems to be done and dusted. Despite a petition from all 19 of Eliza’s classmates, the people this decision was allegedly made in support of, despite the Student Senate at Southern Oregon University voting to support Eliza, despite 40 students signing a separate petition in support of Eliza, despite a protest, media attention, and multiple letters from around the world in support of Eliza, the university has decided to reaffirm their decision to force-quit Eliza from the classroom. She won’t even be allowed to come in for the final class. She will be allowed to get a critique from her university professor, though; the person who, it seems, is the one who has made all the complaints about her.

There are more than likely people reading this right now going “But a kid with Down Syndrome doesn’t belong in a university classroom.” Frankly, I’m not going to debate that with you. I’m not on the admissions team of a university. Unless you’re from SOU, you’re also not on the admissions team that has anything to do with the decision to accept Eliza. But Eliza was accepted by the university as a student. Any other student would be allowed to complete the course, even if they were disruptive, even if they were failing, even if they only attended three courses out of 12.

Frankly, this is shitty behaviour, and I am outraged both on behalf of Eliza, who deserved far better treatment than this, and on behalf of the students in her class who were used as an excuse and a shield by the university who then promptly ignored everything the students said in response.

Further Reading:
Disability Scoop: University Decision To Withdraw Student With Down Syndrome Sparks Outcry
Mail Tribune: SOU students protest rejection of woman with Down syndrome
The Arc: “I am not a disability”: Eliza’s Story
Mail Tribune: SOU dean reaffirms decision to drop art student with Down syndrome

Eliza’s University Experience

What is Ableism? Five Things About Ableism You Should Know

Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.

1. Ableism has a dictionary definition.

The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.

[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.] orig. U.S. Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people. 1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.

It defines ableist as “Characterized by or exhibiting ableism.”

I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.

2. Ableism can be deliberate.

A. The Canadian Government went to court so they could continue to make their web content inaccessible to screen readers.

B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]

C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?

D. Dave Hingsburger: Service Interupted:

‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’

‘I’m sorry,’ she said but I interrupted.

‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’

E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):

Photobucket

Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.

Actual quote: “Don’t let anybody intimidate you”.

3. Ableism has an academic definition.

Here’s a good example:

Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.

Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.

Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.

4. Ableism can be accidental. This doesn’t make it okay.

A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.

B. I don’t the mainstream media woke up one morning en masse and decided to ignore protests in support of the Community Choice Act. I know they managed to do it anyway. More than once.

C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.

5. Ableism kills.

Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer

Twice in one day

Do you ever have one of those days where you just want to shake a fist in the universe’s general direction?

A few weeks ago, I had the fairly weird experience of two different people trying to make the fact that I use a cane a topic of conversation (?) on the same day. Usually, when people feel the need to point out the obvious to me — that I use a cane as a mobility aid due to chronic pain — it happens pretty infrequently, maybe once a month. Twice in the same day, though, just felt strange.

Incident one: As I am waiting for the elevator in a building on my university campus, a young woman approaches me and asks me why I use a cane. She’s curious about it, she mentions, because her mom uses one. I reply that I use it because I have chronic pain, and this seems to satisfy her curiosity. I feel oddly relieved when the conversation stops there.

Incident two: I am walking to a coffee shop, and I pass a row of garbage and recycling containers out on the sidewalk on a busy street. A guy rummaging through one of the containers picks that exact moment to look up; he sees me and yells out, “You’re a YOUNG DISABLED LADY!” I am too confused to respond, and keep walking.

I can hear the refrains now: Those people were just trying to be friendly! They didn’t mean anything by it! They were just trying to start a conversation!

Maybe, but that doesn’t stop having the fact that I move differently from most other people pointed out to me in a very obvious manner (as if I don’t already know that, what with using a cane and all) from being annoying as all get-out.

So, the next time you see a person who uses a mobility aid, service animal, or other assistive technology, please remember: If you have the urge to point it out to them and/or try to use it as a conversational springboard, chances are that you probably do not have to do this. We know that we use assistive devices, and that said devices may look odd to people who are not disabled. It’s cool. We totally get it. And, even if you don’t “mean anything by it” by pointing it out to us or trying to tell us about someone you know who also has a disability, we might read your enthusiasm as something else entirely.

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Accessibility is Not An Individual Problem

If you spend a lot of time talking or writing about accessibility, someone will eventually tell you this apocryphal story:

When Steven Hawking (and it’s always Steven Hawking) started teaching at Cambridge, they needed to put in ramps in all of the buildings, since they all had those beautiful huge sets of stairs as the only way in. One security guard (and it’s always a security guard) protested. “What are you doing that for? I’ve been working in this building for 30 years, and not once have I seen anyone in a wheelchair come through those front doors!”

(I know when people tell me this story I’m supposed to laugh. It’s kinda hard, though: I’ve basically been told exactly that by university administrators; professors; graduate students; student representatives; municipal, provincial, and federal candidates and elected officials; bus drivers; taxi cab drivers; small business owners; large business owners; Fox news commentators; bloggers of a variety of political stripes; apartment building managers; independent book store staff; national chain bookstore staff; people who run on-line campaigns, tea shop staff, coffee shop staff….)

I think what I’m supposed to get out of this story is the ha-ha, look at the ignorant person.1 What I end up getting out of this story is that the burden of pushing for something to be accessible pretty much consistently falls on people with disabilities themselves. We have to ask because no program, no building, no website, will be willingly designed with the idea that people with disabilities are part of a broader target audience. Only websites, buildings, and programs aimed right at people with disabilities will do so. 2 (Until laws are passed, of course. And even then the law will be only grudgingly followed.)

Accessibility is often treated like a favour that non-disabled people do for (or even to) disabled people, one that is given out of the goodness of one’s heart. It’s an individual’s problem to bring up, and the solution is for individuals to come up with.

This attitude comes up in lots of different ways, both online and off. To focus specifically on what larger entities do:

– The issue of subtitling the political ads on YouTube is brushed aside because D/deaf people apparently don’t complain enough about subtitling for politicians to bother subtitling their ads.

– I am on the planning committee for a conference and was told that if actual disabled people signed up for the conference they would bother moving one of the events to a wheelchair accessible space, but otherwise they’d keep it in the room down a flight of stairs because it’s a nice room.

– As I have also pointed out before, having your requirement for receiving funding to complete your education being “student leadership” while simultaneously telling students with disabilities that they’re not able to attend events that are sponsored by the university (which is what having your event up two flights of stairs not suitable for “the very elderly or disabled” is doing) is telling students with disabilities that they can’t get the funding to complete their education. And yes, student funding in Canada is increasingly tied to poorly-defined “student leadership.”

When I point out these issues, I’m often told that these are individual problems: D/deaf people need to complain more! More people with disabilities need to attend conferences! Here, let me give you a list of individual solutions! It basically asks people with disabilities – people who already have a lot on their plate – to do more. And it often puts people in the situation where they may find a solution for themselves, but it’s one that leaves everyone else – whether friend, ally, or fellow traveler down the road – to sort out their own individual solution. To re-invent the wheel every time.

This isn’t the way this needs to work.

How it needs to work: Assume people with disabilities exist. Just like we assume people without disabilities exist.

So, politicians should make their political ads with both disabled & non-disabled people in mind, and thus the idea of subtitling isn’t one that’s new or unusual to them, it’s one they thought of all along. (Bonus points: maybe they could think of actual disabled people when making their platforms, too.) Plan events without assuming that everyone attending is going to be non-disabled. Then no one has to say “I’m disabled, I can’t go down a flight of stairs.”

We don’t act like putting a door in the front of our building is a favour we are doing. We assume that doors are necessary. And yet, people treat having a ramp to that door as a favour they are doing, when the ramp serves the same purpose: it allows people to come inside.

  1. I’m not particularly exploring the class issues here, but that’s only because I’m focusing on disability and not because I don’t think they’re there. Of the dozen or so times I’ve been told this, roughly half have had the teller start mimicking a “lower-class” accent when repeating the security guard’s words.
  2. Before the website upgrade last month, the only page on my entire university website that passed an accessibility challenge was the Student Accessibility Office website. Because of course that’s the only website that a student with a disability will look at, right?

Guest Post from Jesse the K: Voting Opportunities and Mechanics

Jesse the K hopes you can take a disabled feminist to tea this month. Her previous guest post was Making Space for Wheelchairs and Scooters.

There are many things we can do to improve everyone’s lives. Voting is not the only thing, but it sure is easy to do. Many have given their health, their peace of mind, and their lives for the right to exercise the franchise. If you live in the U.S., join me1 and head on down to the polls in your municipality this coming Tuesday.

And while you’re there, you might be wondering, “Gee, just how do people with disabilities vote?” As it happens, I know a little about this.

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CAPTION: laptop size plastic machine with letter-size screen. Woman using powerchair, wearing purple hat and favorite2 purple jacket feeds ballot into slot below screen.

One decent result from the G.W.Bush administration was that the voting process must be independently accessible to people with disabilities. Before then, most people with disabilities would enlist the assistance of a helper where needed. Then they’d vote absentee (returning the ballot in the mail) or bring the helper into the voting booth on the day. I remember assisting a blind person with a mechanical voting machine–a lever for each name! Xe jested that it was a refreshing change to depend on someone with whose politics xe was unsure (as opposed to xir long-time partner), and yet the joke had a bit of a sting to it.

Reflecting strong republican sentiment in the U.S., voting is controlled at the lowest possible administrative level. Voting techniques vary widely from state to state (sometimes city to county). In Wisconsin you can register to vote five minutes before casting your ballot, but in some states you must register 30 days in advance. But since I can now depend on getting my power wheelchair into the polling place, it seemed like a good year to volunteer as a poll worker. I went to the “new election official in Madison” training today [Editor’s note – October 28].

Two points up front:
1. I wasn’t expecting the disablist training, so I wasn’t taking verbatim notes. I could not swear to any of the following in court; as far as the essential drift, I do believe I’m correct and I heard the trainer acknowledge this. (Memo to self: take notes on life.)
2. I am not hosting a discussion of the political or technical validity and/or vulnerability of voting machines. (For the record, I support 3b; it works for us in Wisconsin, which used to be an exemplar of clean politics.)

When our trainer finished walking us through the various elements of a correctly marked ballot, I raised my hand and said, “And then there’s another way to mark the ballot, right, with the accessible voting machine?” Her response began with a non-verbal eye-roll, which I interpreted as ‘yipes, why did she bring this up?’ Then, she spoke aloud “Yes, that’s right. The accessible voting machine is challenging and we’ll get to that later.”

3. Since she never did do a decent job, let me tell you a bit about accessible voting. The access depends in part on the underlying voting technology. Either
a) Everybody votes using a machine.
In this case, one of the machines needs to supply large print, speech output (usually to headphones), touch screen input (no grip required), single-switch input (more details below) and various other hardware “hooks” to the wide variety of assistive tech in use today.
b) Everybody marks a paper ballot, then feeds the marked ballot into a tabulator (a tallying box like the dollar-bill slot on a vending machine).
Typical people use the ballot-marking tools at the end of their wrists. The rest of us have an accessible machine as above which just marks the ballot. (Ridiculously, the manufacturer’s link don’t provide a fully-accessible presentation.)

OK, back to the end of my training session, where I noted she had never gotten back to the voting machine.

She said the accessible voting machine is very important and everyone must have one working at each polling place. She said they could be used by someone who’s blind, or someone who has low vision, or can’t read for any reason, or really just anybody who wants to. She also said that they were very fussy mechanically, so they may not work as well as you’d like.

(At this point fury stunned me into silence. What I should have said is, “And here we have an excellent chance for you to get in front of these issues by training us in how to get them to work correctly! Seize the moment!”)

Another trainee asked what poll workers should do if they thought a voter was being unduly influenced in filling out a ballot. Xe said, “This happened around 6 years ago, when someone who, well, frankly, he was just not cognizant enough to be voting. And the person with them was filling out the ballot for them.” I piped up that this could be a good option to use the accessible machine: somebody who can’t read could be able to understand the speech.

(FWIW, the “Six years ago this r#tarded person was influenced in their vote” is a perennial election year rumor. Neurotypical people are quick to define the minimum IQ they’d set for voting, without exploring the profound mismatch between IQ and ability. Absolutely every social justice activist would do well to read Gould’s The Mismeasure of Man.)

When the training was over, I’d been cleansed by fury and recovered the power of speech, I stopped to discuss my issues with the trainer. I said I was disappointed in her presentation of the voting machine. She reiterated they were frustrating and difficult to use. “Don’t you realize,” she asked, “that most poll workers are over 60 and they are not going to be able to understand this computer?” (Reality check: accessible voting machines are no more a computer than an ATM. Ninety percent of the people in the training were under 55; in all regards it looked like Madison: gender presentation, ethnicity, education levels, evident disability, income levels, number of piercings, which made me happy about my city.)

I asked if that meant my rights as a voter were also frustrating her? How would she feel if I said that permitting her to vote was too difficult? The penny dropped, and she began to apologize for “not presenting in the most effective manner.” At this point her supervisor’s ears pricked up. “Who was deprecating use of the voting machines?” The trainer allowed that her “initial presentation was sub-optimal.” While I was gratified that she’d finally understood, I was frustrated that this right, so long fought for by so many, is still not a matter of fact in our daily lives.

If you’re up for some voting day advocacy, the U.S. Department of Justice provides a detailed guide for access verifiers at Voting Checklist. Folks outside the U.S., what’s the voting situation for you?

  1. As long as you’re government approvable, that is, you’re the right color or rich enough to become a citizen or you haven’t been arrested or too recently paroled as part of your systematic community destruction program
  2. How do I know it’s her favorite jacket? I modeled for the photo

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

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