Tag Archives: ableism

An open letter to abled people who like to glare at people who use disabled parking spaces

Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!

Dear abled people who like to glare at people who use disabled parking spaces,

Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.

However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.

I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.

Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.

Don’t be one of them.

Sincerely,

Chally

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

Dear Political Left: Enough With the Scooter Hate, Already

Every time there’s some political event where a bunch of people gather, some of those people are going to be using scooters (and wheelchairs! and canes! and walkers! etc.). And, invariably, people who disagree with the politics of that event are going to zero in on the scooter users, targeting them as objects of hatred and rage because, well, they’re there. And they’re convenient. From the political left, which prides itself on its ‘sensitivity’ and ‘respect for all people, even people it disagrees with,’ this is especially galling.

Thanks to the tea party in the United States, which is on the rise, there are plenty of events for people to pick from when it comes to selecting the ‘perfect’ scooter user to abuse. Here’s what I’ve learned about people who use scooters, from my fellow people on the political left: they’re old1 and/or fat, lazy, and stupid.

The scooter hate never seems to get old, and people never seem to think there’s any problem with it. It’s gotten to the point where when I’m on a liberal website and I see a picture of a scooter user, I scroll by really quickly so I don’t have to read the caption/commentary, because I already know what it’s going to say. There will be, say, a picture of an older person on a scooter, holding up a sign protesting government health care, and the caption will talk about how stupid and hypocritical the person is, sitting on a Medicare-funded scooter and bleating about government health care (I had no idea you could tell a scooter is funded by Medicare just by looking at it!).

I disagree with a lot of the politics on the right in this country. Vehemently. Just for example, the entrenched opposition to government-funded health care. But while I may disagree with the ideas being espoused by a particular political sign, I attack the sign, not the person holding it. I’m more interested in confronting and engaging with the ideas these people are promoting and I find it, well, interesting that many people on the left apparently aren’t interested in ideas, they’re interested in attacking people. It would be just as easy to challenge the assertions made on the sign without dehumanising the person holding it, but people seem to  have a hard time with this concept.

Now, the left is not alone in this. Scooter hatred is pretty universal. I’ve seen plenty of hateful stuff from the right, too, and I’m not giving the right a free pass here, but since I am a member of the left, I feel like it behooves me to talk about how people who share my politics need to clean house before I go storming over to the right to tell them what’s what. The fact that there are a myriad of left-slanting scooter hate pages on Facebook tells me we have a long way to go when it comes to confronting the deeply embedded ableism on the left.

There are a lot of examples of ableism on the left. Writing about liberal ableism, Annaham says:

For these liberals, everyone deserves respect and opportunity — so it follows that disabled people absolutely deserve to participate in society! Until, of course, accommodations for PWDs conflict with the desired pacing or focus of the liberals in question — or until the PWD no longer conforms to the “angelic” and/or “in need of uplift by the kind liberals” image. Yet often, these same liberals still insist that they can’t be ableist — they’re so progressive!

And, of course, there’s that very distinctive subset of liberal ableism, hipster ableism:

The most insidious thing, for me, about hipster ableism and other hipster -isms is that they are a thinly veiled way to continue being a prejudiced bigot. People can go right on thinking their prejudiced thoughts, and they can hide behind the shield of “humour” and “you just don’t get it” when they are challenged. Hipster ableism, far from being edgy and transgressive, is in fact very safe and affirming.

No indeed, the left is no stranger to bigotry and hatred shielded behind ‘jokes.’ People abuse scooter users in no uncertain terms, making it clear that they view them as subhuman, as worthless, despite the fact that, gasp, some people who use scooters? Are also members of the political left. And are perhaps not stoked at behind characterised the way scooter users routinely are by other members of the left.

This country prides itself on a premise of ‘lively political discussion,’ claiming that even people who disagree can have productive conversations about political issues and ideas. Dehumanising people is not my idea of ‘lively political discussion.’ In fact, it’s pretty much the opposite. When all you have to say in response to political ideas you don’t like is ‘you are not a human being and you are disgusting and you should die,’ that pretty much tells me that you are incapable of engaging politically with people.

Here’s Bill Maher on scooter users, in a quote drawn to my attention by Lauredhel:

New rule: If horror zombies really want to scare me, they have to walk faster. I don’t even have to run from zombies. I can saunter, amble, stroll, promenade, stop for coffee at Peet’s. Zombies, you may be a disgusting, barely ambulatory member of the undead, but so is this guy-[slide of overweight man riding motorized scooter-chair]-and he can catch me.

Leftie favourite Wonkette:

Oh, ye Armies of the Night! Rise up … or, hell, just remain seated. Remain seated, ye lardbottoms, and also stick to daylight hours, so you don’t run into each other, on those ridiculous scooters paid for by Socialist Medicare.

Wonkette also publishes and makes fun of emails from users asking them to reconsider their hateful language on scooter users. This is just the tip of the iceberg, people. I’ve lost count of the number of sites I’ve stopped reading specifically because of the way they talk about scooter users, let alone the other countless examples of ableism strewn across their pages.

Seriously, stop with the scooter hatred already. I don’t know how else to say it. I could say it’s boring, trite, and overdone. I could point out that you are assaulting people in your own movement, people who share your politics and want to engage on the same level you do with the political system in your country. I could talk about how it makes it look like you can’t defend your political ideals, when you can’t even muster a response to opposing politics. Or I could just say that as soon as the scooter hate comes out, I tune out, because I know that you have nothing of interest to say to me.

  1. A nebulous concept that seems to shift across decades depending on who is speaking

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Recommended Reading for 18 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

The first two links were sent in by Penny at Disability Studies from Temple U! Thanks Penny!

Knitting Clio: Ableism and NARAL Pro-Choice America

via NARAL Pro-Choice America, which is running a pro-choice slogan campaign.  Here are the choices:





I voted for the first one — why?  Because using “insanity” to discredit opponents trivializes persons with mental illness — a group that already experiences social marginalization and oppression.

Media dis&dat: South Carolina woman with Down syndrome volunteers as teacher’s aide in special ed classroom (Extra Special Trigger Warning for description of exploitative labor practices passed off as Very Special Favors done by abled folk)

“She had been working at a fast-food place, but they were really taking advantage of the fact that she was disabled,” Masaki said. “So, I offered her a ‘job’ here.”

Brown’s unpaid job is to be a teacher’s aide in Masaki’s classroom. While the position is voluntary, Brown works like the two full-time paid teacher’s aides, Rita Evans and Wendy Usary. The paid aides help Masaki with the classroom teaching everything from potty training to table manners to play time to desk work.

Brown helps control the children and helps keep the classroom running the three days a week she’s there.

The following post, which made me so angry I really cried because I hate the world sometimes, was sent in by reader Blake:

NYTimes.com: Mentally Ill US Citizen Wrongly Deported (TW, because the title doesn’t even begin to cover how awful this is!)

A mentally disabled U.S. citizen who spoke no Spanish was deported to Mexico with little but a prison jumpsuit after immigration agents manipulated him into signing documents allowing his removal, a lawsuit filed Wednesday alleges. His lawyers say the agents ignored records showing his Social Security number, while prison officials wouldn’t tell concerned relatives what happened.

Health Behavior News Service: Kids With Chronic Illness, Disability More Apt to Be Bullied

The study showed that students who reported having a disability or chronic illness — no matter where they lived — were more likely to be experience bullying from peers than those who did not. For instance, in France, 41 percent of boys with a disability or chronic illness reported undergoing bullying compared with 32 percent of boys without. Gender, however, was not a factor — boys and girls were victims equally often.

In addition, when students with a disability or chronic illness were restricted from participating in school activities, they had a 30 percent additional risk of being bullied.

Garland Grey at Tiger Beatdown: The Problem with Policing Someone Else’s Mental Health

Marginalized people are particularly susceptible to having their emotions pathologized, partly because their experiences aren’t typical. When young queers are experiencing depression related to the stigma of their sexuality, people like Tony Perkins swoop in to point the blame at their sexuality, and not the stigma that they themselves are perpetrating. Women, queers, the disabled, people of color, political dissidents, atheists; all of these groups have a history of being labeled “insane” to control them.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 14 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Crazy Mermaid’s Blog: Mental Illness Medication Side Effects

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

Diary of a Goldfish (Thanks, Deborah, for sending this in!): Coming Home Undefeated

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don’t have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

Deaf Echo: It Gets Better. It Really Does. (Thanks, codeman38, for the link!)

A few hours later, I received an email from some guy named Terrence, who told me he had just finished captioning the clip. I guess I’m a little slow these days, because I made no connection between Terrence and Terry.

That’s right. Terry, Dan Savage’s husband, took time out of his day to transcribe their video clip, figure out the program, and upload the captions so that gay deaf kids could have access.

Because. It. Is. Just. That. Important.

Penelope Friday: Read About Cost to the Poorest  of the Newest Welfare Reforms (Thanks, Rosemary, for the link!)

And explain patiently to me that if a family is earning £44000 then they don’t need child benefit. Even if it is the father who earns the money, and the  mother who may depend on the child benefit to have any money of her own (which yes, is often the case, even these days). When women have been able to use their years of claiming child benefit to count for contributions to National Insurance, and now will presumably lose that benefit alongside the present money.

Disability Scoop: SNL Offers Apologies For Disability Cracks

After repeatedly mocking New York Gov. David Paterson for being blind, “Saturday Night Live” used the governor’s appearance on the show’s season premiere Saturday to make amends.

During the show’s “Weekend Update” segment, the real Paterson made an appearance to take some jabs at Fred Armisen’s impression of him and set the record straight.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 07 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Deeply Problematic: Paperwork & homework, anxiety & ADD: institutionalized and internalized ableism

Paperwork is a form of institutionalized ableism. Paperwork keeps folks who have issues with anxiety, ADD, and likely other disorders from living, from working, from getting the care we need to treat that which disables us. It makes paperwork a daunting, insurmountable task – and its incompletion perpetuates guilt and sends it further away from actually getting done.

Wired.com: Exclusive: First Autistic Presidential Appointee Speaks Out (Thanks to reader Sara for the link!)

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

Orlando Sentinel: Chartari Jones: Sanford girl says bullies ‘spit in my hair’

The Sanford girl whose parents said was teased by bullies on a Seminole County school bus in September opened up Monday about her ordeal on national television.

“They would poke me with pencils, call me names and spit in my hair,” Chatari Jones told NBC Today Show host Matt Lauer while wiping tears from her face with a tissue.

WHERE’S LULU: “This American Life” Spotlights “Crybaby” ADA Lawsuit Filers

The episode starts with the extremely-unpopular-with-ablebodies Tom Mundy, who makes a living suing ADA-violating businesses in Southern California. The show’s producer mentions how in California, disabled people can make $4,000 by suing a business for not being up to code. A lawyer who represents business owners estimates Tom has made half a million dollars in just three years.

The producer then drops the bomb that most people who read this blog know all too well, but that most TABs don’t realize: The ADA is not enforced. The government doesn’t even pretend to enforce it – there is no agency (federal, state, regional, or otherwise) to monitor whether or not businesses are complying. So it’s up to people like Tom Mundy to sue in order to gain equal access.

I’M SOMEWHERE ELSE: [No Title]

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they’re just a shitty person who wants to get a leg up on everyone else?

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Dear Imprudence: Interfering in My Friend’s Marriage is My DUTY!

In a recent Carolyn Hax column, a reader wrote in with the following:

Dear Carolyn:

A friend of mine is getting married to a woman who has multiple sclerosis. His family is very upset by this fact (along with a few other issues they have with his bride-to-be). Should something like having a chronic illness even be a consideration when choosing the person to spend the rest of your life with? I wonder if my friend is setting himself up for a very difficult road ahead.

D.C.

Ah, yes, the old concern trolling ‘for the friend’s own good,’ turning to an advice columnist for backup; this letter seems to pretty unambiguously suggest that the family is justified in being ‘upset’ by the friend’s choice of life partner. It’s sort of surprising the letter writer is even consulting Hax, since the opinions in this letter feel very clearly formed, unless this is some sort of devious plan involving casually leaving the paper open to this letter and the expected approving response to say ‘see!’ to the friend.

Unfortunately, these kinds of attitudes are distressingly common. People who marry people with disabilities are told that they are ‘brave’ for marrying their partners and staying with them, and they’re provided with plenty of outs for escaping the relationship; when things get tough, they’re encouraged to abandon their partners ‘because no one would blame you,’ and all problems in the relationship get reduced to the disabilities. And, of course, people preparing to marry people with disabilities are told that they should ‘reconsider’ and ‘think seriously about’ the relationship. The spectre of caregiving is raised to terrify people into thinking ‘oh, right, I don’t actually love this person! Thanks for saving me!’

And Hax’ response illustrated why I love Carolyn Hax:

Of course he is.

And of course a chronic illness should be a serious consideration — your friend would be doing this woman no favors if he didn’t take her prognosis heavily into account — but for many people it’s not a make-or-break consideration.

The way you pose your question, I’m not sure whether the “difficult road” you anticipate is the multiple sclerosis or the disapproving family. Either way, you’re right. However, there are plenty of people who think the toughest road would be the one traveled without the person they love.

Now, it’s not as if illness spins jerks into gold; if your friend’s family has legitimate concerns about the fiancee’s character, then I do hope they’ll spell this out for him.

But if your friend feels, eyes open, that his fiancee is the one he wants at his side, and if his family’s objection is to her illness (with the “few other issues” thrown out there as a fig leaf), then all I can say is, shame on them. Even though I utterly loathe that expression.

People are very fond of judging each other’s marriages. It honestly seems to be a bit of a national pasttime, whether people are judging people for the ceremony, or who is getting married, or changing names (or not changing names), or whether there are children involved, or any number of things. It seems to be generally socially acceptable to meddle in someone’s marriage planning and to make pronouncements about how a marriage is ‘doomed from the start.’ And these comments often come from family. When disabilities are involved, those comments tend to ramp up, and there can be an undertone of extreme ugliness that can be very revealing about social attitudes and the beliefs people feel it’s appropriate to air.

Here, the family has decided they don’t like the fiance, maybe because she has MS, maybe because of something else. The point is that the letterwriter seems to think the MS is sufficient reason to call off the marriage; how could the letterwriter’s friend be expected to marry a woman with MS? They’re in for a ‘hard road’! Everyone knows that people with chronic illnesses shouldn’t get married (and of course that they never marry each other).  The letterwriter seems to be hitting Carolyn Hax up to justify ableist beliefs; to me, it seems clear that the ‘hard road’ referenced isn’t dealing with the family, but, rather, being married to a disabled woman, and Hax didn’t let D.C. off the hook.

I know that at least some of our readers (and contributors) are married or in relationships and encounter these kinds of attitudes about their relationships; how do you counter them? Do you counter them?

Veronika Decides to Die: A Very Special Lesson in Living Your Life Right

Book cover for Veronika Decides to Die by Paulo Coelho. A mostly blue cover depicting a snowy scene with a blurry shadowy figure of a (presumably) woman walking on the snow among some blurry shadowy trees.Every now and again I come across a book that I enjoy enough to read repeatedly. I have several of these on our bookshelves at home. The Harry Potter Series is an annual read for me in my YA set. The Kushiel’s Legacy series is another, in my Not YA set. There are, though, few books that I have encountered that I have read and enjoyed at different periods of my life when that have meant different things to me. Particularly because I have gone through some dramatic life shifts, and because those shifts have given me some fairly fundamental changes in how I view the world, politics, religion, human nature, and mostly myself as well.

One of those books, which has had a great impact on me and which I have enjoyed in immensely different ways at hugely different periods of my life, partly because of the way the author’s experiences are painted into the word work and partly because of the story itself, is Paulo Coelho’s Veronika Decides to Die. Veronkia was recommended to me by a friend who has in the past recommended other books that I have always enjoyed for one reason or another (including The Hitchhiker’s Guide and I, Lucifer, and who also gifted us with a set of 4.0 books for our wedding — you will either fully appreciate that or you won’t), and for me and the way I chew novels for breakfast was a quick read. It took me the better part of a morning. That friend knew that I sometimes practice what is commonly referred to as astral travel, and what I sometimes more commonly lump in with lucid dreaming (they feel the same to me) and thought that I might find the scenes about this topic interesting. I did. In an odd and slightly disturbing way.

In fact, that is how I would describe my first foray into Veronika. Odd and slightly disturbing.

So: Spoilers Ahoy and also a Trigger Warning for descriptions of attempted suicide, a potentially upsetting rape-like scene, and descriptions of mistreatment in a mental hospital.

Veronika Decides to Die (Veronika decide morrer in the original Porteguese) is set in Ljubljana, Slovenia, tells the story of Veronika (I suppose you could have parsed that one out), a 24 year old young woman, who has decided that she has reached the height of her life. She had determined that from this point that life and beauty will probably get no better, and out of no real sadness or unhappiness she has made, in her opinion, the perfectly rational decision to end her life. Her incompleted attempt on her own life winds her up in a mental institution called Villette, in Slovenia, where she awakens to the news that her attempt has irreparably damaged her heart; she is told she has only days to live.

The story is supposedly based on Coelho’s own experiences in mental institutions in his youth where his parents send him for refusing to acquiesce to their demands that he become an Engineer instead of a writer, or at least something useful and respectable. Coelho’s refusal to become something productive proved, to them, that he was “mad”. One of the central themes in Veronika is the idea that collective madness is really sanity, and that sanity is really in the hands of the beholder. Essentially, if everyone in a room, or even a kingdom, believes one reality to be the truth, except for a single person, irrespective of that one person’s authority (the doctor, a king, etc.), then the sanity of that authority is irrelevant, because it is the collective reality of the masses that matters and thus becomes the rational way of thinking.

The way you view this theme really depends on your views of people’s right to define their own mental abilities. I viewed this book through two very different lenses in my life, one where I was fighting my own mind, and one where I was coming to terms with myself instead; a period of self-acceptance rather than self-loathing (still working on that last part). Veronika depicts a mental institution that both suppresses people’s free will, yet allows them to stay beyond the requirement that binds them if they choose to do so. Don’t be fooled, however: There are still many things going on, such as forced medication, forced inside and outside time, and even a scene that describes, very graphically, a treatment of induced insulin shock that sends a patient into what she calls a state of astral travel. The balance of treatment of human dignity with that of the way that disabled people are often treated as objects to be shuffled around and poked and strapped down is troublesome at best, and hard to read without a watery field in front of you at… well my worst. Maybe not yours.

Very troubling to me is the overarching theme, embodied in Dr. Igor, the head psychiatrist at Villette, who has decided that Veronika, a beautiful and vibrant young girl, is wasting her life, and must be taught a Very Special Lesson. So sad, is it, that she has decided to throw away youth, and beauty, and that she is ignoring all that life must be waiting to hand her. He, obviously, knows her life better than she, and is uniquely prepared to teach her that she is, indeed, Doing It Wrong. R-O-N-G, even. How good of Dr. Igor, this man, to come and rescue this poor, helpless, and foolish girl from what might have been the worst mistake ever.

Dr. Igor has this theory, see, that people, like a defibirillator paddle on a heart, just need a jump start to avoid the heart attack that is this mental illness, something he calls “vitriol”. He believes he can shock people into appreciating life and just help them realize that they can simply buck up and learn to love life again.

I don’t want to spoil the book for you, gentle readers, if at this point you are still with me, so I won’t go into detail about how Veronika becomes not only the tool by which he provoke many of the residents of Villette, including Eduard, a patient diagnosed with schizophrenia who becomes a love interest for Veronica, and Mari who has frequent panic attacks. I also won’t tell you how Veronika learns her own Very Special Lesson, because she is not left out of that condescending rule of Dr. Igor who swings his diploma like a true Patriarch. She suddenly sees that she is free from the rules of a society that has given her a laundry list of expectations, and that she now may act like the “crazy” person that she is being treated like. No one believes that she just felt like ending her life, for no particular reason, so she may as well act the part. She starts to see the comfort that is Villette’s lack of accountability.

I think this book speaks strongly to the way that we dehumanize and mistrust mental health patients and people living with any variety of mental illness. Even if I don’t always appreciate Coelho’s delivery.

A caution to you, gentle readers: There is a rape-like scene, depending on how you read it (the first time I read the book, I did not read it this way, the second, I certainly did). Veronika performs a masturbatory act in front of a person who neither consents nor denies consent. It is fairly graphic in description, and it very much made me uncomfortable, no matter how “freeing” it made Veronika feel.

The book was made into a movie that I have not yet seen, as it didn’t appear at any theatre anywhere near where I was living. It stars Sarah Michelle Gellar as Veronika (a stellar choice, IMO), and David Thewlis, most well known to me as Professor Lupin from the Harry Potter series, as Dr. Igor. Should I get the chance (I love you, NetFlix, for coming to my APO!), I may revisit the review.

Who out there, gentle readers, fellow contributors, has read Veronika? Thoughts? Popcorn? Tomatoes?

Book Cover Image: Wikimedia Commons