All posts by Anna

Recommended Reading for April 1, 2010

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A painting done showing hands in the Signs for A-S-L

Shit I Hate: Models as the Face of ED Survivorhood

Let me be clear – I do not hate models who are suffering from eating disorders, have come out as ED sufferers or survivors, or who have turned to advocate for other sufferers. That is a good thing to do, it comes from a place of kindness and intelligence, and it is an admirable use of privilege in order to help others. Model moral behavior, you might even say. However, I do not like the way the models’ narrative seems to be the dominant or even only story that is recognized in our wider media as the neatly-packaged beginning-to-end textbook case of an eating disorder. I’m focusing on women here because women’s bodies are, overwhelmingly, the target of these narratives. I’m also focusing on those women who have made it to tell their stories – though we know many will not make it, and we do not forget them. I’m talking specifically about media portrayal of ED survivors.

Nursing at the Keyboard [NAK]: How to give boob and type too

When my kids were little, they nursed a lot. A LOT. They were both evening cluster feeders, which meant that my options for the evening were to sit on the couch and watch TV or read a book, or I could NAK. Nursing at the keyboard was often the best choice for me. Television was sometimes too loud and the Internet was just too compelling. But as someone who has mastered the art of typing, trying to type messages one-handed while nursing a baby quickly got old. Something had to be done about it.

So I worked out a system.

“Let’s Go Talk to Patio Furniture”

One day Wanda refused to assist me in the bathroom and gave no explanation why. I was in class (college) so it was not like I had my mom there and none of my friends knew how to transfer me (why would they?). So there I was at lunch, needing to pee but my aide refusing. So I had to ask one of my friends. My aide wouldn’t even help explain how to transfer me or do anything else. I had to eyespell how to do everything to my poor friend.

Dear Michael & Brian, You Were Lied To

At i09, M. Night Shylaman answers questions about The Last Airbender Live Action Move (aka, that Racist Mess). And he shows not only that he’s the South Asian equivalent of an Uncle Tom; he shows that he doesn’t get the optimism and hope of Avatar – that it wasn’t that it started young and skewed older, but that it has a foundation of joy and hope and friendship that carries all through; just as it has a foundation of being non-white fantasy.

Remember the interview that’s now unfortunately on the official animated series DVD? About how he ‘got’ it all?

M. Night Shylaman lied.

Judge Quentin D Corley

Another disability history image thanks to the Flickr Commons project. This one is from the Library of Congress’s set from the George Grantham Bain Collection, news photos from 1910-1915. Here we see Judge Quentin D. Corley (as the title suggests), driving a very early model car with steering wheel adaptations for his prosthetic left hand; the right sleeve of his jacket appears to be empty. Corley looks to be a young man wearing a white summer hat.

Life is Too Short

Brandy, a large yellow Labrador worked faithfully by her partners side for 11 years. She was the first service dog for people with physical disabilities I ever met and I still remember meeting her and her human on while we were stuck on a plane having electrical difficulties on a tarmac in a plane going nowhere anytime soon. As the crew allowed other passenger to exit to plane if they wish for a bit, this gentleman and I bot made the decision to sit tight because it was too much of a hassle to get of the plane and risk not getting back in time.

Does Diagnosis Matter?

In the recovery movement, which is the zeitgeist in the delivery of mental health services at this time, we are supposed to look past someone’s diagnosis. I am not “a bipolar” or “depressive” or “schizophrenic.” I have been diagnosed with such, but the relevance of that diagnosis is highly suspect. Because aren’t I just Liz? Liz who is addicted to Dunkin Donuts hazelnut coffee, Liz who likes chihuahuas in sweaters, Liz who tries to do gluteal exercises to increase her butt’s circumference — without success. So many things make up my Liz-ness, right? So who cares what some doctor said?

Generally speaking, I agree with this approach. For many years we have been labelling people in an attempt to treat them, and the results aren’t exactly stellar. So why not change protocols, DSM by damned?

This Situation Is Not Unique DISCUSSES SEXUAL ASSAULT

When I was in middle school, around the same age as this little girl is, and freshly diagnosed with Aspergers, I was also a victim of sexual harassment/assault, repeatedly, by my classmates. Innapropriate touching, lewd comments about my body, and bragging about taking advantage of me because I was too “retarded” to understand what was going on. This continued for three years uninterrupted, and only slightly lessened when I entered high school. Nobody did anything, not teachers, nor my parents, nor the administrative staff at the private school I attended. Whether it was due to them being oblivious to the bullying, whether they thought that because I was bigger than the other students that I should “take care of myself”, or because the students who tormented me were wealthy and came from good families and I didn’t, I’ll never know. I suffered in silence. In fact, until today, I’ve never talked candidly about the fact that I was sexually assaulted. I simply labelled it “bullying”.

Making “Invisible Women” even more invisible

media and pop culture, social attitudes

One the arguments about why it is difficult to center the voices of women with disabilities seems to be that there just aren’t that many of us writing. Or maybe we don’t write in an easy-to-understand way. Or maybe we don’t write in a way that’s clear to people are currently non-disabled. Or maybe there just aren’t that many of us writing, so finding a good example of writing by women with disabilities to highlight is just very difficult.

Or so I’ve been told.

Certainly it’s something we at FWD have run into in argument after discussion. Reaching out to those with disability and inviting them to speak for themselves is hard. Our response has been, of course, to start this blog, but also to try and highlight the voices and experiences of others. We’ve had guest posters, of course, and have a weekday “recommended reading” selections that seeks out posts about disability written mostly by people with disabilities in their own voices. We have a lengthy blog roll that is just a tiny sliver of the disability-focused blogosphere. And by no means are any of these comprehensive. Every year I read Blog Against Disablism Day and am taken aback by the depth and breadth and variety of posts on the topic. We write, we talk, we sing, we sign, we compose poetry, we dance, and we express ourselves, all there in our own voices.

Heck, you’re all probably aware of some of the important rallying-cries of people with disabilities. “Nothing about us without us“, say, or “Autism Speaks doesn’t speak for me“.

I mention all this because I was surprised to read “Invisible Women” at the Human Rights Watch blog, originally published at the Huffington Post. It was written by Joseph Amon, who is the director of the health division at Human Rights Watch.

It’s an interesting article, and I do recommend reading it all. Here is the part of it that made me think, today, of the number of times people with disabilities are rendered invisible by social justice movements:

Women with disabilities are made further invisible because few statistics are collected that describe their numbers, and decision-making bodies in both the public and private sectors rarely include women with disabilities or consult with them. This makes it difficult to identify the key challenges women with disabilities face, or to advocate for targeted programs to address those challenges. Even when data about disability are collected, these figures are often not disaggregated by gender. Without a place at the table, women with disabilities cannot make their voices heard or their concerns addressed.

Until recently, women and girls with disabilities have largely been invisible even within the disability movement and women’s movement. The issues facing women with disabilities have not been priorities for either community. But that is starting to change.

You know what also renders us invisible?

Not allowing or inviting us to speak about our own oppression.

So many opportunities to allow women with disabilities – these invisible women – to talk about their experiences.

So many opportunities squandered.

Related: My experience at a disability-focused all-candidate’s debate during the provincial elections where the organizers refused to allow people with disabilities to ask questions because it would be “too difficult” for the candidates. The candidates were there to highlight their Party’s concerns and plans for people with disabilities.

Recommended Reading for March 31, 2010

recommended reading

A wheelchair symbol lit up in florescent light

Having an Answer:

Yes ladies and gentleman there are people in the world of rehab and fitness who actually give a hoot about you the person not just you the underlying diagnosis. You just have to find the right people.

And when you do, life just rocks a little bit more.

I hate to write another letter. I am tired of writing letters

If one were a wheelchair user who regularly interacted with a bus drive that demonstrated a lot of irritation at having to work with wheelchair users to get them strapped in to a wheelchair spot, one could likely tell. People are never as subtle as they think they are, especially not in their irritation.

Trans Lit – searching for our reflections

And I think the thing that does bind different trans* identities together – somehow feeling outside one’s assigned gender roles – could allow those interested in trans fiction to enjoy a wide variety of trans protagonists, even if not every protagonist matches every reader’s lived experience.

When all you have is a hammer

Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

Abilities & Burnout

Besides the basic fluctuation–and serious differences in ability between different areas, including what gets described as dyscalculia–I kept running into problems from this. Especially when I hit adolescence, then later when I hit college. (Then I burned out. Repeatedly. Which made things that much better.) Heck, the gaps and difficulties were obvious enough by the time I was 8 or 9 that one great-aunt, an educator whom I rarely even saw, brought me a huge stack of books on coping while “gifted”. I appreciate this gesture much more now–especially since she was the main person not pretending that I was not having problems coping–but the books didn’t help.

In my particular case, the unexpected skills/ability to show skills pattern got some really nasty interpretations–especially in school–because I was good at testing. (Less so, these days.) The lowest my IQ tested out was 185. I am not mentioning this out of some weird sense of supremacy, but to point out the serious disconnect between some other people’s expectations and what I was ever able to do. It’s apparently easy to project like mad, and build a mental construct of “someone that smart” based on assumptions that you, personally, would never run into a problem that you couldn’t think your way around if sufficiently motivated to do so, were you “that smart”. It’s not much of a leap to then substitute that mental construct for the real human being in front of you, and make up all kinds of weird explanations for why the two do not match. At all.*

Misconceptions about Autistic Abilities & Intelligence

Another misconception involves the idea that a high test score always indicates across-the-board ability. In truth, a single skill might enable a person to do well on a broad range of tasks at a certain age, when that same skill will not help a person as they get older. Amanda mentions in the comments that her IQ score dropped by half between the ages of five and 22. She attributes this to her hyperlexia, which enabled her to score in the 160s at age five, but wasn’t helping her anymore as an adult. Interest in and, hence, familiarity with the test items would also have an effect. For instance, I’m not sure I would still score as high on calculus as I did in childhood, because I had a special interest with it back then and haven’t in many years.

In the news:

USA: Disabled Immigration Detainees Face Deportation

The detainees, mostly apprehended in New York and other Northeastern cities, some right from mental hospitals, have often been moved to Texas without medication or medical records, far from relatives and mental health workers who know their histories. Their mental incompetence is routinely ignored by immigration judges and deportation officers, who are under pressure to handle rising caseloads and meet government quotas.

Marlee Matlin launches YouTube Channel

Marlee Matlin had an idea for a reality show that she hoped would bring some insight into the lives and struggles of deaf people and how they cope. But while reality TV has brought us wife swappers, party girls, aging rock stars and dieting divas, apparently no one was ready for something that real.

So instead, the hearing-impaired actress who won an Academy Award as lead actress for her role in “Children of a Lesser God,” took her show “My Deaf Family” to Google’s YouTube. You can watch it here.

“Deaf and hard of hearing people make up one of the largest minority groups,” she said in an interview through her interpreter, Jack Jason, “and yet there has never been a show, a reality documentary series that features what life is like for them.” Matlin financed the show, which tells the story of a family in Fremont, Calif. All the family members are deaf, except for the oldest son, Jared, and the youngest, Elijah. It is narrated by Jared.

Matlin shopped her pilot to network executives, who purported to “love it.” But none would take the plunge.

Recommended Reading for March 30, 2010

recommended reading

The Summer of Nadia

I remember the doctor talking about my diagnosis that day in the summer of Nadia, and what would likely happen. Terms like “swan-necked fingers” and “hammer toes” were thrown around. I remember he never looked at me as he spoke, though he used my various body parts to demonstrate. Nor did he talk to me; he talked to my parents (a phenomenon I would continue to experience until I was in my teens), trying to prepare them for the future.

No one talked to me. No one asked me how I felt about the whole thing, or how I was supposed to cope with this emotionally. But it was the ’70s. Children, even sick children, were to be seen and not heard.

A Rant, if I May

I have met so many parents that cannot wrap their heads around this. When I explain that while the hearing is fine, that the problem the child likely has is a listening one, they smirk and nod and say to the child, “See! I knew you were just not listening to me!”. And the hurt I see on kids faces really breaks my heart. I want to be their ally. I want to explain to their carers, the people on which their world depends that they do WANT to listen, but they cannot. I want to explain that there are many things they can do to make it easier for their child to listen, to parse that confusing, jumbly, noise their brain is presenting to them – without making it sound like concessions you have to make for a willful and “broken” child. To let them know that needing captions on TV is a valid and sound strategy and that they should encourage their children to assert themselves and ask for what they need from this noisy world of ours in order to make sense of it. Like asking for repeats. Like asking for repeats even if they get teased about being deaf, or get chastised for not paying attention the first time, or any of the other terrible things that happen when you ask for something already once given.

The fuzzy boundaries of accessibility

This is a thing that i’ve been thinking about since a couple of conversations with friends (both multiply-impaired, i.e. both neurodivergent and with physical/mobility impairments) about accessible and inaccessible venues: what are the boundaries of the concept of “accessibility”?

Since moving to a new city a month ago (more on which in an upcoming “personal update” post, if/when i get round to writing it), i’ve decided to firm up my policy of boycotting inaccessible event venues: i don’t want to give money to events or buildings that my friends who have different or additional impairments to me couldn’t get into. However, while this *looks* simple (at a superficial first glance), if you dig even a little deeper, all sorts of ambiguities arise…

Hate Propaganda and ‘Sex’

So, this bill would make it a criminal offence to kill members of a group or deliberately bring about conditions that would cause the groups’ destruction if you did it based on the sex of the people in the group. I should also mention that a bill similar to this has been introduced three times previously, and that this particular issue was mentioned in the latest version of the Pink Book (see p.25).

I am all for adding “sex” to section 318(4). I think it is amazing that it isn’t already there. I also think that since this is a private members bill and is at least the fourth attempt to make this amendment, the chance that it will actually become part of the Code is on the slim side. The Canada Human Rights Act and provincial human rights legislation across the country (I’m not going to link to all of theme here) prohibit discrimination based on sex. If its not OK to pay a woman less or deny her a home because she is a woman, then it seems only reasonable, to me, that it should also be unacceptable to advocate for killing or harming women because they are women.

Questions for a Twenty-something with CP

What advice would you have for parents raising kids with cp?

If your kid has cp they’re no different than any other kid, at least from their perspective. They know nothing else other than life with cp, even if they have siblings. I don’t see myself as someone with cp, at least not at first, and even then it takes someone pointing it out to make me see it. One of the biggest things that bothers me about parents of cp kids is when I hear them say things like, “I wish you could be normal,” or “Now you can be a normal kid.” It really makes my skin crawl. Once, while I was watching something on Discovery Health—I’m a Discovery Health junkie—this kid who was maybe 4 and had cp was having tendon lengthenings. Having had tendon lengthenings myself, I was interested to see the actual procedure done. This kid wasn’t even discharged from the hospital and his mom was crying—I mean bawling—because now he could be like “every normal boy” and I’m thinking…well I won’t tell you exactly what I thought since I’m sure you’d like to keep this at least PG-13! But basically it was, “That’s a lot of pressure to put on a kid who is barely out of an OR” especially since his normal isn’t “everyone’s” normal.

Audiences & “Disability Ghettos”

Shannon wants to talk about how his art and creativity are not tied to his disability. He wants to reinforce the idea that he is not there to fill the disability slot on any program. He is an artist. A performer. And he wants to be — no, should be — taken seriously as such. This is a really hard project. When funding often comes from disability related sources, you get promoted as a “disabled” artist. When disability is the first thing your audience sees, you are interpreted as a disabled artist. Disability has a way of making itself felt. And there’s not much you can do about it.

That said, no one should be going around — journalist or performer (it’s not clear whose phrase it is…the quotes seem to suggest it belongs to Shannon) — talking about disability ghettos.

What’s in a Decade or Why The History of Feminism Matters

And also, well, the past really is more complicated.

To start where Courtney ended: Yes, feminist blogs are very new, and they rock. The only blogs I knew of in the late 1990s were a few people’s personal online diaries. That was it. But by 2000, there were lots of online communities. For me, Salon’s Table Talk filled some of the needs that blogs now meet. I’d just become a mother, and I remember (for instance) lengthy discussions of Andrea Yates’ murder of her children that helped me place her act in a larger, political context of untreated postpartum depression and fundamentalist Christianity. Of course there were trolls on Table Talk, too, but it wasn’t the nightmare that Salon’s letter section is today. So, while blogs were the best invention since wine and cheese, they also built on existing forms of online community.

Jenny McCarthy & Autism Part 1: If we shame parents enough, maybe autism can be cured!

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I read an article a few weeks ago claiming that Jenny McCarthy’s son had never had autism, so perhaps her argument that she had “cured” him of autism through diet and other non-medical means should be dismissed entirely out of hand.

The actual article in Time Magazine is a bit more complicated than that – there’s speculation within in that McCarthy’s son never had autism, and some discussion about how parents of autistic children have always looked for “cures” that vary from dietary changes to cooper bracelets, from vitamin shots to behavioral therapy, and that McCarthy’s thing is basically that she’s famous and has a son with autism and has used her larger platform to get more attention towards her cause. Okay, I can see that.

But I don’t like it.

The reason I don’t like the methods that McCarthy is advocating for are, at the heart, simply this: I think it harms parents of children born with disabilities, and I think it harms people with disabilities.

I want to start with parents of children who are born with disabilities, and then will talk about the harms to children born with disabilities (and the adults they become) in a later post.

The biggest recurring conversation I have with parents whose children were born with disabilities is how often they’re asked, whether explicitly or implicitly, what they did wrong. What they did to make their child disabled. What they are not doing right now to “cure” their child. What is their horrible failing that “made” this thing happen to their child. Often, of course, this is directed at the mother. Did you drink? Did you do drugs? Was there any way you could tell before the baby was born? If you had known, would you have gotten an abortion? Did you know as soon as your baby was born? Did you do something? Were you working past a certain month? Did you eat right? What did you do?

Because, you know, your child’s disability is all your fault. It’s a personal, moral failing on your part, and you need to do something about it.

I see these play out as well in the shaming of certain types of women for deciding to have children. Don’t you know that children born to mothers over a certain age are much more likely to be disabled? Don’t you know that you shouldn’t have a baby if you have a disability because your child might also have a disability? Shouldn’t we sterilize certain types of women so we never end up with more of their horrible, awful, crippled babies?

What does all of that have to do with Jenny McCarthy?

Jenny McCarthy was famous before she started on her discussions about her son’s autism, and became more famous afterwards, getting on Oprah to talk about her son’s “recovery” from autism. She talked about the special diets she put her son on. She’s probably the most famous mother of an autistic child. So, the biggest thing people are likely to know about autism now is that you can “recover” your child from if it you feed your child a special diet.

So why the hell is your child still autistic? Your child can be cured if you just try hard enough.

Quick: On top of all the self-blaming that many parents with disabled children do, have society blame you as well.

Certainly that makes it easier for people to dismiss the needs of families affected by disability. Your child is like that because you did something wrong, you decided to go forward with a pregnancy, you haven’t tried hard enough.

So flounder there.

I think it’s important to separate the experiences of parents who have a child with a disability, and the experiences of children and adults with a disability. There are conflicting needs when it comes to these two groups, and I feel that there’s a strong tendency to figure that if you’re helping parents who are currently non-disabled but whose children have a disability – especially if that child is autistic – then you’re helping the child as well. There is overlap, but not as much as the general public has been led to believe.

Part 2 will talk about Jenny McCarthy’s ideas and how they impact children with disabilities, and part 3 is about whose voices we amplify, and whose are ignored.

Recommended Reading for March 29, 2010

recommended reading

Anna’s note: Hi! I’m going to be included a link or two a day for the next couple of weeks that isn’t explicitly related to disability. I will also be increasing the number of links I put up a day – you may have noted that I lean towards 5 as my number – so that there are always at least five links related to disability. I feel that the other links that I will be including are in line with FWD’s mission to approach feminism from an intersectional perspective.

Everything I Needed to Know About Access Activism I Learned in Kindergarten

Or another reason might be that I’m tired of the responsibility for access issue being disproportionately allocated to the very people who are up against the access issues every. Single. Day. I would humbly suggest that every member of every University decision-making body has their own brain and can decide for themselves if they want to care about access, and if they want to become informed about the issues, and if they want to invest their time and energy into pushing those issues at decision-making levels. If non-disabled people on committees never think to ask themselves about disabled access, or never think to speak up about it, why should I think that my voice will be listened to? And what does that say for their commitment to access that they can’t be bothered to do the work themselves and instead decide to offload it onto precisely the people who do not have energy for it because we are too busy navigating an inaccessible campus?

Getting a token disabled person on a committee to keep “holding you to account” about disability or sexism issues is a good way of making it look like you care about equal opporunities when you just don’t care enough. Because if you really cared, you wouldn’t be relying on a disabled person or a woman to be doing your homework for you. You’d be doing your own homework, and holding yourself to account.

More on Classism, and some thoughts on Ableism, within Vegan Movements

Over the past year I’ve been thinking more about the privileging of the able-bodied (& neurotypical) in activist movements — including, but by no means limited to, veganism & animal rights. Often certain types of activism are held up as the pinnacles of commitment & getting shit done: direct action; mammoth demonstrations on the street; confrontational protests; etc. These are more risky for people who do not fit within a certain paradigm. For example, the risk of being dragged away by the cops at a protest may look very different to you if you are: POC; gender nonconforming; undocumented; a person with childcare commitments; female; disabled — not that any of these categories are mutually exclusive, of course!

Rethinking Work: Cooking as labour

Out of the kitchen and into the workforce arguments always had a class (and race) division to them: many women had already been working and didn’t find it particularly liberating. Many of them, often women of color, worked as domestic laborers as well—getting paid, if not very well, to do the same work they then did for free at their own home. Well-off women were already recognizing in their own way that cooking was work, and we still recognize this when we watch cooking shows on TV or go to restaurants, fancy or otherwise.

Now back-in-the-kitchen arguments have their own class dimension. They imply the time to spend in the kitchen as well as the money to buy fancy ingredients. Ethically produced local food tends to be more expensive partly because the people who produce it are being paid decently, so despite the lack of middlemen we pay much more for organic produce from the farm around the corner.

Dear Moby And Miley: Please Shut Up About The Disorders You Don’t Actually Have [I recommend missing the comments]

Your brain is not Sephora. You don’t get to walk in and pick a bunch of “trendy” shit to throw on in order to make yourself look better. And you don’t get to accessorize with the “hip” disorder of the day just to make yourself seem “weird” and “fascinating” to your stupid friends. That’s not how it works. And it’s not fair to those of us who actually do have to deal with such diagnoses, and all the work, medication, and often times difficulties that come along with them, to act as if it’s adorable or hilarious that you’ve declared yourself to have something that you don’t. You’re not helping the cause any, and you certainly aren’t helping to research or de-stigmatize such things by wearing them as some kooky hipster badge of honor. Nor are you helping the public’s perception of bipolar disorder by comparing it to your shitty movie options.

On my usage of “crazy”

When I first started working it out of my vocabulary, my criteria would be to stop and think (1)if I literally meant something was mentally ill or not (easily done by replacing the offending word with “mentally ill” and seeing if the sentence still worked), and (2)if yes, then was I putting that thing into a negative light by describing it that way. For example, if I’m reading a piece of literature and it’s really confusing to me and I throw the book down and exclaim “that’s just crazy!” – am I trying to say that I think the book or the author is mentally ill? And if I *am* trying to say that, am I saying it because I’m annoyed with it, and calling it crazy or mentally ill is a good way to discount it and feel better about not wanting to interact with it anymore?

If that’s the case, if I’m trying to imply that something is mentally ill because that makes it easier for me to throw it away, what am I saying about mental illness and those of us (myself included) who are mentally ill? Wouldn’t it be better for me to throw the book down and say “I really hate this author’s narrative style!” or “This is pretentious bullshit!” or “I can’t figure out the point of this and it makes me mad!”

I am tired of disability stereotypes and tropes

Do you know what I’d love to see? More shows and movies and books with character who just happens to be disabled. That their disability NOT be the focus of the episode but rather just happens to be included within the episode. No more super special episodes/movies/books about a super special person – but just an episode/movie/book with an interesting character who just happens to have a disability. One of the main characters on ER, Dr. Kerry Weaver, who was introduced as accomplished doctor – and that’s what the audiences saw the most because her disability was hardly ever mentioned. I’m sure there are other characters like her around – but I don’t know enough about them to counteract all the other characters I know of. The character portrayals that are bothersome and sometimes hurtful.

Value Added

Uncategorized

I’ve spent a lot of time over the past few weeks advocating with various people about issues regarding students with disabilities. (You may have noticed an upswing in posts from me about exactly this – now you know why.) Part of that has involved asking pointed questions about students with disabilities, and some of it has been writing letters to the editors, and some has just been sitting right in front of people so they – who I have talked to before about this – are reminded that students with disabilities exist and generally pay the same fees that their non-disabled counterparts do, so perhaps they should also be acknowledged as existing.

What I don’t think people who I am doing this for realise is that I am doing them a favour. And one it would be nice for them to acknowledge and thank me for.

Teaching people about disability-related issues is something I’m expected to do as a disability rights advocate. To others, of course I should spend an hour sitting with someone and explaining ways that I find the Student Union Building on campus to be inaccessible and offer them suggestions on how to fix it. To them, it’s a favour they’re doing me if I lead them on a two-hour tour of my campus explaining just the various accessibility-related issues that I am aware of, and referring them to other people I think would be helpful for them to consult. If I spend, say, an afternoon drafting up book lists or an evening chatting with them about accessibility in their space, they perceive that as something they are doing for me.

But people with disabilities are people who may, for example, come to your university, and bring tuition dollars with them. They may come to your event and buy tickets. They may present poetry of amazing beauty and cutting cruelty at your poetry slam.

When I, or other disability rights activists, or other people with disabilities who do not perceive themselves as activists, dedicate their time to explaining something about accessibility to you, they are doing work. They are taking time they could be spending doing anything else, and giving it to you, so that your project/event/blog/university/home can be welcoming to more people.

It’s not that I think people who are not disabled should never ask people with disabilities or disability rights activists to discuss issues related to accessibility and disability with them. But I really wish that people would, quite frankly, treat that as work we are doing.

Recommended Reading for March 25, 2010

recommended reading

Some reasons to provide transcripts

Transcripts are often framed as an accessibility issue for people who are Deaf or hard of hearing. This is certainly the case; if you post a video or audio clip without a transcript or captions, people who are Deaf or hard of hearing will not be able to access it.

However, there are some other reasons to provide transcripts—reasons which I think should be pretty compelling even to people who don’t care about making their content accessible to Deaf and hard of hearing folks—if you want as many people as possible to be able to engage with your website and your content, you should be providing transcripts and image descriptions.

You don’t need captions and dismissal of needs

That aforementioned disadvantage of being unable to process sounds and dialogue kind of impairs my ability to watch a movie, especially the first time, under “normal” conditions, where the movie is put on and the audience sits down to watch without doing much else. However, in this day and age where we have DVDs with captions “for the hearing impaired,” I can make it so that there are captions to accompany the dialogue. The words on their own are just garbled sounds impossible to process in time because new sounds have to come in, but with words added, there are the characters to explain which words the sounds are supposed to be. They aid my understanding of which sounds go with which words.

True Story

My little boy was written a prescription for Occupational Therapy by his pediatrician for dyspraxia and hypotonia.

My insurance approved the prescription.

After 2 years, they revoked their approval because he has autism and backcharged me $24,000.

Guilt…

I know that this isn’t a helpful reaction, or one that reflects reality well, but my brain doesn’t seem to get the message. I wish it would, but that’ the beauty of mental illness, isn’t it? To have separate truths, coexisting.

That damned social conditioning, always reminding me that I am not the deserving poor, that there are people worse off than me and that I should just suck it up and do better. Other people “win” the battle against mental illness, why can’t I?

And a reminder: Next Carnival of Feminists is coming up on March 31 at Beauty Schooled Project. Deadline for submissions is March 29.

Note: There won’t be a Recommended Reading for Friday, March 26th as Don & I are visiting the Cancer Doctor to find out what’s going on with Radiation.

Recommended Reading for March 24, 2010

recommended reading

Vaginismus and biofeedback on Dr. Oz

Unlike a few months ago when Dr. Oz did vulvodynia, this time he did not have a representative from a vaginsimus awareness organization on the show. Perhaps this is because there is no such nationally recognized vaginismus organization (that I’m aware of,) as there is with the National Vulvodynia Association. There are patient-led organizations, treatment clinics, support groups, and doctors prepared to address vaginismus, yes. But for some reason Dr. Oz did not have anyone from one of these groups on the show to talk about it. Instead, he called a random audience member, Ronnie, onto the stage.

I think it is no coincidence that on this episode, without the direction of someone experienced in dealing with vaginismus, it was treated more flippantly than vulvodynia was a few months ago. Vaginismus was compared to panic attacks, localized to the pelvic floor.

One Hell Of A Ride

I’ve been talking to several people about cures and quality of life, and I find I’m struggling to organise my thoughts on my own quality of life. I’ve blogged extensively about this, both the negatives and some of the positives. But some of my interlocutors seem to want one-line generalisations like “given the choice, one would naturally chose not to be blind”.

But I can’t do that. I can’t put the whole of my disabled experiences in tidy one-line summaries like that.

T-shirt Slogan Fail

The stigma surrounding mental trauma and non-neurotypical brain conditions is a huge barrier to full emotional health. When people are unable to talk about their condition for fear of being ostracized, or losing a job, or being kicked out of housing, or losing custody of a child, or coerced into treatment regimens they don’t consent to “for their own good,” the silence they are forced into only exacerbates their suffering. It cuts them off from potential sources of support. [And let me be very clear that the fears listed above are not irrational and paranoid: they are very real occurrences; I’ve experienced a couple myself.]

I’m all for people taking steps to eradicate the stigma of having a mental illness or non-neurotypical condition, and I think it’s great to have allies in this struggle. So for the most part, the goal of the website is a decent one, and I was happy to see that the site also contains good information for people just starting out in trying to understand what it means to have a mental health condition that can impair one’s day to day quality of life.

But.

In the news:

US: Vermont cop tases and tases a mentally ill homeless 59 year old woman

A cop in Barre, Vermont repeatedly tased Ann Osborn, a 59-year-old mentally ill homeless woman who was standing in a parking lot with her arms folded.

Fiji: Hospital faces major wheelchair shortage

Health Ministry spokesman Iliesa Tora said the lack of wheelchairs was a problem especially at the Colonial War Memorial Hospital’s Emergency Unit. CWMH’s Emergency Unit, known to cater for the very critical and serious cases, now faces a problem to provide wheelchairs to assist those who can not walk or find difficulty to walk in to see a doctor. It was confirmed that wheelchairs were shared among patients and in some cases caused delays for those who needed immediate attention or wanted to go to the toilet.

Happy Ada Lovelace Day!

Uncategorized

Ada Lovelace Day is a celebration of women inventors & women in the sciences. It is also a poorly-disguised excuse for me to history geek at everyone around me, since, of course, we can celebrate awesome scientists both past & present.

I know that this list is fairly quick & dirty – the history of technology & medicine is not really my strong point, I must admit, and I’m still hoping to get a broader list next year and in future years. I also, of course, want to live in a world where one does not feel obligated to spend a “special day!!!!” celebrating the achievements of women because those achievements are no longer underplayed, undervalued, or just ignored. But, since I live in this world, with my own limitations and my own need to learn more, this is the list I have.

A (short) (biased) List of Women Who Invented Stuff Relevant to the Interests of Some People With Disabilities:

Dorothy Crowfoot Hodgkin won the 1964 Nobel Prize in Chemistry.

A British biochemist and crystallographer and the 1964 Nobel Prize winner in Chemistry for her determination by X-Ray techniques of the structures of biologically important molecules. Dorothy Crowfoot Hodgkin used X-Rays to find the structural layouts of atoms and the overall molecular shape of over 100 molecules including: penicillin, vitamin B-12, vitamin D, and insulin.

Helen Free invented the home diabetes test

Three years after beginning work at Miles, she married Albert Free (1947). Often working together, they became two of the world’s leading experts on urinalysis, an essential clinical procedure with countless applications. Free first developed dry reagents for use in laboratory urinalysis that are now, in tablet form, standard around the world. She went on to develop more consumer-oriented devices. The most important of these was a “dip-and-read” test that for the first time allowed diabetics to monitor their blood glucose level instantly and at home.


Gertrude Elion invented the leukemia-fighting drug 6-mercaptopurine and drugs that facilitated kidney transplants.

Gertrude Elion patented the leukemia-fighting drug 6-mercaptopurine in 1954 and has made a number of significant contributions to the medical field. Dr. Gertrude Elion’s research led to the development of Imuran, a drug that aids the body in accepting transplanted organs, and Zovirax, a drug used to fight herpes.

Dr. Marie Curie is known to the world as the scientist who discovered radioactive metals.

Together with her husband, Pierre, she discovered two new elements (radium and polonium, two radioactive elements that they extracted chemically from pitchblende ore) and studied the x-rays they emitted. She found that the harmful properties of x-rays were able to kill tumors.

Rachel Fuller Brown and Elizabeth Lee Hazen invented the worlds first useful antifungal antibiotic – nystatin.

As researchers for the New York Department of Health, Elizabeth Lee Hazen and Rachel Fuller Brown combined their efforts to develop the anti-fungal antibiotic drug nystatin. The drug, patented in 1957 was used to cure many disfiguring, disabling fungal infections as well as to balance the effect of many antibacterial drugs

Bessie Blount patented a device that allowed amputees to feed themselves

Bessie Blount, was a physical therapist who worked with soldiers injured in W.W.II. Bessie Blount’s war service inspired her to patent a device, in 1951, that allowed amputees to feed themselves. The electrical device allowed a tube to deliver one mouthful of food at a time to a patient in a wheelchair or in a bed whenever he or she bit down on the tube. She later invented a portable receptacle support that was a simpler and smaller version of the same, designed to be worn around a patient’s neck.


Patricia Bath invented the Cataract Laserphaco Probe.

Patricia Bath’s passionate dedication to the treatment and prevention of blindness led her to develop the Cataract Laserphaco Probe. The probe patented in 1988, was designed to use the power of a laser to quickly and painlessly vaporize cataracts from patients’ eyes, replacing the more common method of using a grinding, drill-like device to remove the afflictions. With another invention, Bath was able to restore sight to people who had been blind for over 30 years.

Betty Rozier and Lisa Vallino invented the Intravenous Catheter Shield:

Betty Rozier and Lisa Vallino, a mother and daughter team, invented an intravenous catheter shield to make the use of IVs in hospitals safer and easier. The computer-mouse shaped, polyethylene shield covers the site on a patient where an intravenous needle has been inserted. The “IV House” prevents the needle from being accidentally dislodged and minimizes its exposure to patient tampering. Betty Rozier and Lisa Vallino received their patent in 1993.

Krysta Morlan [who has cerebral palsy] invented the cast cooler:

Krysta Morlan’s first invention was a device that relieves the irritation caused by wearing a cast called the cast cooler. The portable cast cooler works by pumping air into a cast through a plastic tube. Krysta Morlan was in grade 10 when she invented the cast cooler. Still in high school, Krysta Morlan then invented the Waterbike, a semi-submersible, fin-propelled pedaled vehicle.

Françoise Barré-Sinoussi was half of the team that discovered the human immunodeficiency virus (HIV):

Françoise Barré-Sinoussi and Luc Montagnier discovered human immunodeficiency virus (HIV). Virus production was identified in lymphocytes from patients with enlarged lymph nodes in early stages of acquired immunodeficiency, and in blood from patients with late stage disease. They characterized this retrovirus as the first known human lentivirus based on its morphological, biochemical and immunological properties. HIV impaired the immune system because of massive virus replication and cell damage to lymphocytes. The discovery was one prerequisite for the current understanding of the biology of the disease and its antiretroviral treatment.

Feel free to add to it in the comments, or link your own posts regarding Ada Lovelace Day!