All posts by Anna

Final Carnival Reminder!

Uncategorized, ,

Today is the deadline for submissions for the Disability Carnival.

If you emailed something to carnival at disabledfeminists.com and didn’t get some variation of “I got your submission! Thank you!”, then I haven’t received it. The alternate address is anna@annaoverseas.com.

The optional theme is intersectionality. However, any posts you’ve written about disability that you’d like to see included in the Carnival are fine to submit. Also, feel free to submit posts by others that you think are good for inclusion!

I will accept anything that comes in before I wake up my time tomorrow. I don’t wake up that early. I live in Atlantic time, which is something like GMT -4.

Carnival will be posted here on November 19!

Jordan’s Principle

intersectionality, race, social attitudes, , , , ,

This post was originally published in July 2009 as part of International Blog Against Racism Week

One of the things that we talk about here, on occasion, is how lucky we are that Don is a white man with a disability living in Canada. Things become more complicated in my post-racial utopia of a country when someone of a different race is born with a disability.

Take, for example, the case of Jordan River Anderson, a First Nations boy from Norway House Cree Nation in Manitoba. Jordan was born with “complex health needs” (this is code for Carey Fineman Ziter Syndrome, a rare muscular disorder) and spent the first two years of his life in hospital. At that point, his doctors agreed that he could go home and live with his family, although he would need continuing care.

If Jordan hadn’t been First Nations, he would have gone home, and his care would have been paid for by the provincial government as part of his health care costs. However, as a First Nations child, the cost of Jordan’s care became an argument between the provincial and federal government. Neither wanted to pay for it, so Jordan stayed in hospital.

He died at age 5, having never been home.

First Nations advocates came together and wrote Jordan’s Principle:

Under this principle, where a jurisdictional dispute arises between two government parties (provincial/territorial or federal) or between two departments or ministries of the same government, regarding payment for services for a Status Indian child which are otherwise available to other Canadian children, the government or ministry/department of first contact must pay for the services without delay or disruption. The paying government party can then refer the matter to jurisdictional dispute mechanisms. In this way, the needs of the child get met first while still allowing for the jurisdictional dispute to be resolved.

This was adopted unanimously by the Canadian Government in December, 2007.

In principle.

Special Needs Kids May Be Forced Into Foster Care (May, 2008):

Government infighting has families in a northern Manitoba community in anguish about how to best care for their children.

The Norway House Cree Nation has told the families of children with special needs that they may be forced to give up their children because the First Nation can no longer pay for their care, and federal and provincial governments can’t agree on who should pay.

…

Charlene Ducharme works with the Kinosao Sipi Minisowin Agency, a social agency on the reserve, and said she has yet to see Jordan’s Principle in action. She said the children of Norway House deserve the same care that other Manitoba children get.

“Our premier said Manitoba would be the first one to implement Jordan’s Principle… we’re still waiting.”

Late in 2008, the Manitoba Government also adopted Jordan’s Principle.

However, in reality, very little has changed. According to a UNICEF report issued this year, in honour of the 20th Anniversary of the Convention of the Rights of the Child, First Nations, Metis, and Inuit children in Canada still suffer in comparison to other children:

1 in 4 First Nations children lives in poverty compared to 1 in 9 Canadian children on average.

In cities of more than 100,000 people, approximately 50 per cent of Aboriginal children under the age of 15 live in low-income housing, compared to 21 per cent of non-Aboriginal children.

In contrast to the national infant mortality rate of 5 infant deaths per 1,000 live births, the rate is 8 per 1, 000 among First Nations and 16 per 1,000 in Nunavut (where 85 per cent of the population is Inuit).

Only 63 per cent of First Nations children on selected reserves accessed a doctor in 2001; 46 per cent of Inuit children and 77 per cent Métis children did so, compared to 85 per cent of Canadian children on average.

Between 33 and 45 per cent of Inuit, Métis and First Nations children (on and off reserve) report chronic illness.

On-reserve First Nations child immunization rates are 20 per cent lower than in the general population, leading to higher rates of vaccine-preventable diseases.

38: The percentage of deaths attributable to suicide for First Nations youth aged 10 to 19. In 1999, the suicide rate among First Nations was 2.1 times higher than the overall Canadian rate. The rate of suicide for Inuit is 11 times higher than the overall rate of the Canadian population.

[Source] [Report Summary, WARNING: PDF]

Canada’s ranking on the Human Development Index, which is used by the United Nations to measure a country’s achievement in health, knowledge, and a decent standard of living is third. Evaluating the living conditions of First Nations, Inuit, and Metis people alone, their ranking is 68th.

My country prides itself on being “better” than the U.S. on issues of race.

Jordan died 800 km from home because he was First Nations. First Nations children in my country are not getting the care they need, the care available to other children, because they are First Nations.

This is not an improvement.

[International Blog Against Racism Week]

Recommended Reading for November 16

recommended reading, , , , , , ,

Just by luck of the draw, today is all news all the time.

Autism is not a dirty word

“They have one line and they just repeat one line. It is a very bizarre sense of autism.” Pierre Lellouche, the French minister for Europe, made headlines with his attack on the British Conservative party’s attitude to the EU. For us Guardian readers, sympathy with Lellouche’s frustration in his dealings with Hague and Cameron will be overshadowed by annoyance, even outrage, at his pejorative use of the word “autism”.

Wikipedia tells us that autism is “characterised by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour”. Doesn’t that describe the Tories in Europe to a T? We all know what Lellouche meant. He wasn’t trying to give a diagnostic definition; shouldn’t we accept his choice of words – as his spokesman has pleaded we should, since “President Sarkozy is called autistic every day” – simply as a colourful way of making a point?

Mind Your Language: Words can cause terrible damage [And, again – I disagree with the idea that calling people names based on disability is the last acceptable taboo and that people are always punished socially for using racist slurs, and never punished socially for using ableist slurs. This isn’t a zero-sum game – we’re not somehow getting less abuse if we acknowledge that other people are getting abused, too. However, I think there’s a lot of good in the article.]

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

Employers anxious about hiring people with disabilities, but see their value

More than 100 human resource executives from a cross-section of Ontario-based firms took part in the study commissioned by the Job Opportunity Information Network. JOIN helps individuals with disabilities to find and maintain employment, and assists employers in recruiting candidates.

Among respondents, 36 per cent say they were discouraged from hiring a person with a disability out of concern that it would be harder to dismiss a person with a disability than someone without one.

Family: Gym Took Advantage Of Man With Disability

The brothers of an Indianapolis man claim a local gym took advantage of their developmentally disabled sibling, signing him up for a contract that he couldn’t understand.

Mark Hannon is 49, but functions at a much younger age, the family told 6News’ Rafael Sanchez.

That’s why they were upset when Hannon told them that two men representing Bally’s Total Fitness came to his door last week, offering to sign him up for a gym membership.

Harvi Carel: My 10 year death sentence

“So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”

Glee: “That’s why we call it dismissing legitimate concerns instead of acting”

media and pop culture, , , , , , , , ,

Glee‘s been in the news a lot lately, have you heard?

Basically, after a three week hiatus, the show came back last week, and wow, was there a lot of press about it. Not because of the show’s performance, or the show’s “diversity” award, but because of the controversy that has been suddenly generated by the show.

That’s right, suddenly, with no history of protest whatsoever, people with disabilities were complaining about the show! Just days before it aired its Very Special Disability Episode, “Wheels”! Who would have imagined!

Or, more accurately, people with disabilities have been talking about issues with the show since the first trailers hit the internet, with incisive commentary after the first episode was aired, but this only became of interest just a few days before the show wanted everyone to see how “serious” they were. As I said in an angry comment elsewhere:

“Now we’re listened to, when it will get people irritated at those uppity people with disabilities who should stop complaining and just enjoy the show.

We were here before. And I don’t appreciate our concerns being used to generate hype for the show.”

[Anna, you’re so oversensitive. First you were angry because they didn’t listen to your concerns, and now you’re angry because you don’t like when they chose to listen to your concerns? There’s no pleasing you, is there?]

This is not listening to our concerns. This is giving our concerns very short attention so you can ask cast members about the “controversy”, and so nice able-bodied people can say things like this in a spoiler-filled review of the show overall:

“Wheels” Doesn’t Just Feel Good, It Does Good: Aside from what you may or may not have read from the Associated Press regarding the usage of wheelchairs and disabled actors in this week’s episode, I think you’ll discover that “Wheels” is all about empowering people with disabilities and sends out an uplifting message to the disabled community. It should also be noted that the series now has a recurring character with Down’s Syndrome (who it is will surprise you), which I don’t think has happened on network TV in a very long time.

Thanks, Nice Able-Bodied Lady! I will take your words to heart and just ignore what those silly people with disabilities are saying! It will be better that way!

[Before I go any further: I didn’t feel “empowered” by Glee, nor did most of the women with disabilities that I know. That said, my goal here isn’t to tell you or anyone you know how to feel about the show. My objection to the above is not only the condescending tone and dismissal of everything that people who actually work in the industry are saying about representations of disability and how that affects their work, but also being told how I should feel about the show.]

I pointed out my two biggest issues with this show at my Dreamwidth [in short: three different characters fake a disability in this episode, and we find out that Tina has been faking her stutter since sixth grade in order to get out of things she didn’t want to do. As kaz points out in the comments, that’s not how that actually works], and although I intend to talk about that more later, this post is going to be about the media and general response to people with disabilities discussing the show and their reactions to it.

From Fancast: TV Controversies, Protesting the Protests:

Disabled advocates vs. ‘Glee’

The protest: Some disabled Hollywood actors protested last night’s episode of ‘Glee,’ because it focused on Artie, the wheelchair bound member of the glee club, who is played by a non-disabled actor, Kevin McHale.

Protesting the protest: That anyone would call Ryan Murphy’s series discriminatory fails the laugh-test almost immediately. Last night not only dealt with the trials that Artie must go through on a daily basis while being handicapped, but also the fallout from Kurt coming out of the closet. And did I mention that the episode featured not one, but two actresses affected with Down syndrome? We defy you to find another show airing in primetime that would deal with one of these issues, let alone all three in one episode. This is a show that prides itself on acceptance and understanding. That McHale isn’t handicapped doesn’t make it less so. What’s next: Teen actors protesting that Cory Monteith is actually 27 years old and not 17?

Unlike the earlier post, this one doesn’t even bother to link to what people with disabilities are actually saying, which makes it really easy for people to just shrug and agree with their edgy “protesting the protest”. This, of course, means they can tell you that the whole of people’s comments are that they didn’t give the role to an actor with a disability.

Most of the people I know who think the show is poorly done crip-drag talk about not only McHale’s ability-status, but also the way that his character, Artie, is treated by both the explicit text and implicit subtext of the show. To give an example, Artie’s wheelchair is basically a prop that other members of the show push around whenever they want. To give another one, he’s shown before “Wheels” as the only ‘main’ character who doesn’t even get flirted with by a character who tries to flirt all the boys into accepting her into the Glee Club. Because teen boys with disabilities are non-sexual, I guess.

But, obviously the creators of the show have taken this all into account when discussing the controversy, right, because they are very respectful of the “disabled community”.

Not according to the interview they had with PopEater:

‘Glee’ executive producer Brad Falchuk backs him up. “We brought in anyone: white, black, Asian, in a wheelchair,” he told the AP when discussing the hubbub. “It was very hard to find people who could really sing, really act, and have that charisma you need on TV.”

He too understands the concern and frustration expressed by the disabled community, he said. But McHale excels as an actor and singer and “it’s hard to say no to someone that talented,” Falchuk said.

Again, how nice it is of people to lump all criticisms together, and then give a nice happy answer about how they “understand” what people are complaining about, without actually addressing any of it. “Oh, there just weren’t any people with disabilities who could really act and sing and be on t.v.!”

According to everyone associated with Glee, they didn’t mention that Artie was going to be a full-time wheelchair user (or, as the folks in most of the articles I’ve read put it, “wheelchair bound”) when they were casting for the show.

I wonder if any of their casting calls actually encouraged actors and singers with disabilities to apply, or if they just figured they didn’t need to do that type of recruitment to get actors with disabilities – used to being overlooked for any role that isn’t explicitly about disability – out. I guess I won’t know until they tell us, and that’s not the sort of question anyone in the press seems to want to ask.

Of course, as always, the fun is in the comment sections. On Thursday, melouhkia put a post up at Bitch magazine called Glee-ful Appropriation, about the issues she had with the episode. It was also mirrored at their Facebook Account.

Very first comment can be summed up as “Stop your whining.”

It seems to me if you’re going to have an issue with a non-disabled person playing the role of a disabled person, you cannot appreciate any level of acting because all acting is a lie. Maybe that’s why it’s called acting. Just sayin. So, you should also be up in arms about the actress who is portraying the pregnant teen because she’s not pregnant in real life, and likewise, you should also feel your feathers ruffled by the cheerleading coach because she’s not a coach in real life. See where I’m a-going with this?

Yes. Where you’re going with this is ignoring the real concerns about presentation, appropriation, and the lack of job opportunities for actors with disabilities on television so that you can tell us that our feathers are ruffled. It would probably be easier if you told melouhkia to not critique pop culture on a pop-culture criticism blog.

Oh wait, someone else did that for you.

From the comments on Facebook:

I get that this is “responses to pop culture” and you can all have your moment of fit-throwing (I had one after seeing “Next to Normal” on Broadway). But so far your response hasn’t opened up any useful political space…it’s just tried to punish your political allies for not being as perfect as you are. So you know, go get your waders. You’ll need them when you start digging yourself out of this claptrap.

Which I read as “I’ll be your ally unless you start critiquing pop culture I actually like, and then you’ll be sorry, because I will stop supporting you.”

Other people may read it differently.

All of this, of course, is an awesome way of dismissing some very serious and real concerns about the way the show has chosen to portray disability. If you make the entire discussion about how those uppity people with disabilities should just shut up and stop complaining because their ideas are stupid and they should feel stupid, then of course it’s easy to dismiss them out of hand. And who needs to discuss nuances in the presentation of disability, anyway? Everyone knows that there’s no connection between how identifiable groups are portrayed on t.v. and how other people react to them, right?

In fact, I think the best way to sum up where my issue with McHale portraying Artie really comes into play is from this quote from McHale himself, from the NY Post’s interview with him after the episode aired:

PW: Which was more shocking Tina’s fake stutter or Artie’s reaction?

Kevin: Well, we kind of figured her stutter would go away, but we never know what to think on that show. So I’m going to say Artie’s reaction was more shocking. At first I couldn’t figure out why he was being so dramatic. But I really think Artie fell for Tina because they were set apart by their disabilities. They’re already kind of outcasts being in glee, but within that group they shared a connection. So he based their whole relationship on that and when it went away, Artie didn’t know what to do.

You know, Kevin, I can think of some very good reasons why people with disabilities might be angry at someone saying they’d been faking their disability for years. Maybe if you spent any time dealing with people assuming you were faking, accusing you of trying to “game the system”, telling you that you’re just a whiner for wanting extra time on an exam, or not been able to get into half the shops in your town because of “just one step”, you might get it a bit better.

Something that, had you even talked to someone with a disability about the issue, you might have understood.

I guess that’s why we call it acting.

A Few Relevant Posts on “Glee”

media and pop culture, recommended reading, , ,

ETA: I’ll be adding links from the comments to the bottom of this page, so check back for more when you get a chance!

I know people are searching for our responses to the Very Special Disability Episode of Glee. I’ve got something going up Monday, but I wanted to highlight a few very good responses from other people to the episode, specifically people who are actually knowledgeable about the disabilities presented on the show. So, obviously no one actually associated with the show itself, because they seem pretty clueless.

From Wheelchair Dancer, who is an actual dancer in a wheelchair, Glee

And then there’s the sad fact of the “dancing;” the choreography sucks. The one potentially interesting move that McHale supposedly “does” is a cut — he wheelies on one rear wheel. The rest is notable only for the way that it shows that able-bodied, non-wheelchair-using folk really do think of chairs as bicycles you move with your arms. There’s absolutely no body-chair integration at all. They think of sitting in a chair as being only about not being able to move their legs (and in Artie’s case as being about having his hips and legs twisted to one side). That mistaken understanding leads to some very weird looking people in chairs. On chairs would be a better phrase for it. The fake paralysis of their legs somehow wends its way up their bodies so that they are really only able to push with their elbows (no wonder they have sore arms!).

It’s so interesting watching them try to dance. Push. Make a dance gesture. Push. And they are only able to muster up those little beginner pushes. You know the ones I mean? The frantic shoves at the wheel? They push, the wheel doesn’t respond; they don’t know how to ride a stroke and feel the momentum. This means that they basically either push the chairs around in formations (because they can’t dance and push) or keep the chair still and hurl their upper bodies and arms around. Hilarious. Explains the weak choreography, too. Understand how a disabled dancer moves with the chair, Mr. Woodlee, and you will be able to create something a little better than bad dance.

And Kaz (who you may recall wrote a fabulous guest post on asexuality), who has that stutter that Tina’s been faking to get out of basically everything, wrote Because incurable speech disorders just up and vanish all the time, don’t you know:

THIS IS THE PROBLEM. They “figured it would go away”. Because nearly every single fucking time a stutterer appears on TV (or in movies, or in books, or or or…), it just. Magically. Vanishes. They learn to accept themselves! Overcome their fear of XYZ! Face their deepseated trauma! BYO offensive stereotype! And poof, the stutter is gone!

I think the only good thing I can say about the development in Glee is that at least they spared me that. At least she was just *faking* it, at least it didn’t just do the impossible and spontaneously vanish.

Kaz also left a comment on my post about the idea you could get out of things with a stutter:

Sure, other schools may be different, but I really doubt that many of them will just say “okay, you don’t have to do this” to a stuttering student (particularly if they start stuttering just before the presentation, and I’d think that teachers would know developmental stuttering almost always develops between the ages of two and five or so, but – oh, right, I’m bringing *facts* into this. Mea culpa.

And, a few reaction posts from us, off this blog:

In case you missed it, here’s melouhkia’s review over at Bitch, Glee-ful Appropriation:

There were so many problems with the way this episode handled disability that it’s almost impossible to know where to start (truly, earlier drafts of this ballooned into thousands and thousands of words). It hit a number of major tropes for pretty much a hat trick of disability fail. We got “disability is inspiring,” “disability is a burden,” “appropriation of disability for a Very Special Learning Experience,” “faking disability,” and “see my sister has a disability so I’m not a bigot.”

Here’s the thing about tokenization, which is what this episode specialized in: It does nothing to advance the cause of people who live in marginalized bodies. Hiring an actress with Down’s Syndrome for a single throwaway guest role is not including actors with disabilities. Centering a disability plot around able bodied characters is not including people with disabilities. Continuing to use crip drag (and having the actor unabashedly say “this isn’t something I can fake”) is not including people with disabilities. Painting accessibility as a hardship, a burden, and “special treatment” is also not including people with disabilities.

And, this was my review, just a couple of hours after I saw it, Why Can’t I Make You Understand / You’re Having Delusions of Grandeur:

Three people faked having disabilities in this episode. (Well, I guess four if you count Kevin McHale, but let’s put that argument aside for a moment.)

Tina’s been faking her stutter all along, in order to get out of having to give a speech in the sixth grade.

People with stutters are routinely mocked and yelled at, told to get over it, and basically the subject of ridicule. And yes – people do think stutters are faking it for attention. But Glee, that “diversity” show, has presented stuttering as something that will get you left alone, and something easy to fake. For years.

This is the show that’s supposed to make people with disabilities feel empowered.

I have no doubt there are lots of reviews of this episode by people with disabilities. Please leave links in the comments! I haven’t had time to go looking for them, so I really want to read them.

ETA: From Matthew Smith: Wheelie Catholic wrote Glee Wheelchair Episode Not Gleeful

All I can say is that Glee is in a fine mess now. The real problem with this show, as with the rest of Hollywood, is that it keeps insisting on portraying an able bodied version of characters with disabilities. Writing an episode on sensitivity toward a character who doesn’t really have a disability to convince those of us who really have disabilities that the show is enlightened just isn’t going to work. Nor did the subplot of a girl with a stutter confessing she really doesn’t have a stutter help. It’s all very confusing and gave me a headache.

Here’s what I suggest. Since the show decided a sing-off was fair between two characters, why not bring in a wheelchair user to sing and dance against Artie?

ETA 2: Sarah points to her post: This Week’s Glee: Good, Bad, and Horrific:

Cheerleading coach villain Sue was “humanized” this week. And how was she humanized? Because we found out she has a sister with Down Syndrome. That’s right. Suddenly we’re supposed to see that she’s actually a good person because she’s nice to her disabled sister. (And she gave an opportunity to a girl with the same disability as her sister, and she donated money for wheelchair ramps which the school was legally obligated to provide in any case.) I find this absolutely disgusting, as it seems to indicate that characters with disabilities exist only to prove “background story” and “humanity” to the “normal characters.” They are, at best, plot devices, rather than true characters. I can’t believe some people are seeing this as a good way to include people with disabilities. And please, don’t expect disability rights advocates to pat this show on the head for hiring a few actors with disabilities in minor roles. Just because the show considered Down Syndrome harder to fake for the general public than paraplegia doesn’t mean it’s doing anything to expand opportunities for actors with disabilities. These two minor roles (which probably won’t even recur again, I would guess) don’t make up for the aforementioned crip drag, let alone for the ways in which people with disabilities are being used in this episode.

Via The Goldfish, Terri’s post My Hopes for Glee

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over–more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional…

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

[Terri also talks about her conversation with her son, who is an actor, about the crip-drag elements.]

Access Fandom is also doing a link-roundup, because Access Fandom is made of awesome. If you’re looking for fandom-related discussions about disability, I really recommend following Access Fandom. [This is totally influenced by the fact that Sasha Feather, Kaz, and Were Duck are amongst my very favourite people.]

Your Chilling Fact For The Day

accessibility, autonomy, intersectionality, social attitudes,

Originally published July 2009

The PALS also indicates that Canadian women, 15 year of age and older, experience a higher prevalence of disability at 15.2 percent, than Canadian men at 13.4 percent. In 2006, 19.5 percent of Ontario adult women reported having a disability compared with 16.6 percent of men (Statistics Canada, 2006). Women with disabilities are significantly more likely to experience abuse than non-disabled women. It is estimated that women with disabilities are 1.5 to 10 times more likely to experience violence than non-disabled women, depending on whether they are living in the community or an institution (Public Health Agency of Canada, online).

[From: We Are Visible: Ten Years Later WARNING: PDF]

So.

How many emergency shelters are you aware of that are fully accessible, have a ‘terp available in some way for Deaf women, or provide their information in Braille? Have grip bars in the bathrooms? Have accessible toilets?

How many have funding for all of this?

The last women’s shelter I volunteered in had a disabled-parking zone in front, but that’s all I recall. What about you?

Recommended Reading for November 13

recommended reading, , , , , , , ,

Mental Health and Promiscuity

However, even in this environment there is one area that has always troubled me and that revolves around the concept of promiscuity as diagnositic criteria.

My first and biggest problem with this is that I have NEVER heard this brought up as a symptom of mental illness when discussing a male. It is always something that is brought up about a female. I can’t help but assume that this is linked to the belief that “excessive” sexual activity is normal for a man and not a symptom of mental illness while no “healthy” woman would engage in or enjoy casual or alternative styles of sex. I also think it is linked to the belief that women are the only ones that have sex with other people due to low self esteem or possibly in a reckless manner because they have some self-destruct tendencies. See, sex is damaging to women, they can’t just enjoy casual encounters or engage in sex purely for self-satisfaction: they must be wounded in some way or they must be wrongly searching for the intimacy they so desire.

Reasonable Accommodation

I find myself caught between disabilities.

One of my most promising paths forward health-wise right now is finding a low-impact, non-repetitive form of exercise. Since I have done yoga in the past, I have been searching for a yoga studio. But since I’m in the western suburbs of St. Louis… there just isn’t much here. The most promising place, that offers classes that fit into my schedule, that is likely to be understanding and accomodating of my back issues, is Bikram.

Now I did Bikram a few years ago and loved it – unfortunately, over the course of a couple of months the humidity in the room (Bikram is “hot” yoga, done in a room that’s about 90 degrees) started making my hearing aids go wonky, so I stopped.

You Can Make Fun Of Us But You Can’t Give Us A Chance

The character was dressed in a blue latex suit that covered his head, and he was constantly babbling like an idiot and drooling on himself. I admit that I found the Handiman skits to be hilarious when when they first premiered. The disabled community had been non-existent in Hollywood up until then, and it continues to be non-existent today, so it was good to see some representation, and me not knowing how much of a negative image it was at the time, appreciated the recognition.

I was in my junior year in high school when Handiman made his debut. Ever since I was mainstreamed back in the fifth grade, I have always caught hell because of my disability. I remember being teased many a-day throughout grade school, high school and even college. Handiman perpetuated the stereotypes that people had about people with disabilities. Even to this day, the techniques have changed, but I pretty much know when people are trying to belittle me. Children aren’t as cunning or crafty to hide their emotions, so they would usually laugh or make “retarded-stupid” comments about me.

The Usefulness Factor

Sometimes you can maintain a career from your own home, such as on the computer or as a consultant on the phone. Sometimes you just need to stop and re-think the whole idea of being useful. The question of “why am I here?” seems to become magnified when you become confined to a small physical space with others doing all the things you used to do for yourself.

But that does not mean you have become useless. It is very easy to fall into the trap of believing that, especially when people say things like, “it must be so nice to be home all the time and do nothing!” It is not particularly nice to have no impressive answer when people ask what you do all day, but if you are able to ignore that and realize that everyone is on this earth for a reason, you are on your way to finding a new sense of purpose. Maybe not a financial one, but perhaps a spiritual one, which is even more important.

In the news:
Francesca Martinez: A Wobbly Girl Battles Against The Last Taboo [Although I disagree with the idea that disability is the “last taboo”]

Francesca Martinez’s victim is squirming. Trapped under the scrutiny of the comedian and fellow members of the audience at her show in Edinburgh, he is clearly wishing for the proverbial hole to open up. “What are you bad at?” asks Martinez. “Football,” comes the sheepish reply. “Were you born like that?” she enquires, head tilted in sympathy, “Couldn’t your mum have had a test when she was pregnant?” Turning to the man’s girlfriend, she simpers: “You are so brave. Well done… Does it mean he can’t have sex?”

Martinez’s humour bears a political sting. As one of a tiny number of disabled performers who have made it into the mainstream, she is not about to waste opportunities to ram home a message. Born with cerebral palsy, the 31-year-old refuses to accept the label of her condition, preferring to describe herself as “wobbly”.

Power and Responsibility

bodies, feminism, shaming, social attitudes, , , , , , , , , ,

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.

Recommended Reading for November 12

recommended reading, , , , , , , , , , , , , ,

Private Practice Takes a Bold Stance against Decent Behaviour

There’s a new doctor at Naomi’s practice, Dr. Fife, a genetic engineer who uses a wheelchair who pressures Naomi into agreeing to select for an embryo for two patients with dwarfism to allow them to created a baby who also has dwarfism. Naomi is reluctant but agrees until she learns that these embryos will also give the future baby a 40% chance of developing some kind of cancer (which Lauredhel over on FWD points out, is the baseline cancer risk for the US population).

18th Down Under Feminist Carnival

This Carnival has an optional caring theme, thanks to Australian Carers’ Week (which was October 18 to October 24). The theme for this year was “Anyone, Anytime, Across Australia”, which I modified to “Anyone, Anytime” for the purposes of the DUFC.

Denmark Strips Away Right To Privacy from Blind Voters

On Wednesday I read that one of my blind friend’s in Utah just experience voting by himself for the first time thanks to his voting machine having built in text to speech. On that same day, I also read that the blind in Denmark not only don’t get to vote by themselves, they have to have a council member present when they’re voting. This rule was supposedly implemented to make sure that the sighted helper wasn’t pressuring the blind voter to vote in a particular way, but what it really does is just strip that voter of their right to privacy.

On being “Crazy”

Crazy is something altogether different. Crazy is delusion, psychosis, mania, schizophrenia. Insanity, in the depths of society’s psyche, is jabbering in tongues rocking back and forth in a padded room. It can’t be trusted. It is the serial killer, the mother who kills her children, the man who laughs while committing the most vile crimes – this is what “crazy” conjures up in the minds of the general public.

This terror, this nightmare looming in the dark places of our collective consciousness is harmful. Incredibly so. It means that people who are not neurotypical are stuck with the paradoxical choice of lying or being mistrusted. Perhaps more importantly, it makes us less likely to seek help when it is needed. It took me years to admit, even to myself, that my brain was fundamentally different than most. Because I didn’t want to be crazy.

In the news:
Vatican post office issues stamps with raised dots to honour inventor of Braille system

The Vatican post office says it has issued its first Braille stamps to commemorate the 200th anniversary of the birth of Louis Braille, the French creator of the writing and reading system for the blind.

The stamps feature a portrait of Braille and his system’s raised dots that spell out Braille, Vatican City State and the price.

Don’t forget, we’re also doing some guest blogging at Bitch Magazine! Check out meloukhia’s introductory post about disability! (Yes, I do write up recommended reading in advance.)

Campaigning: A (brief) Guide for Inclusion

activism, politics, social attitudes, ,

Before Don told our political party of choice to go take a long walk off a short pier*, I used to be That Girl at Riding Association meetings, at committee meetings, and at rallies.

[You might be thinking “Why would your husband telling a political party to get lost mean you wouldn’t be part of them anymore?” Don told them to go away and they stopped calling and emailing me too. Which is why I don’t deal with them anymore. If you’re going to claim to be representative of women in Canada and then stop interacting with me because my husband told you off, then I guess my money and my time can go elsewhere.]

Anyway, That Girl. That Girl, who would say things like “When you mumble and look down when talking, it’s very hard for people who have hearing loss to understand what you’re saying.” That Girl, who would say “This website is horrible on accessibility issues. Can you suggest your webmaster develop a text-only version? And stop using PDFs instead of web pages!” That Girl, who still emails every political party in Canada once a month to ask for transcripts of their YouTube Videos. That Girl, who has only once seen a transcript, and has never received a response.

One of the problems with being That Girl, who points out problems with accessibility a lot, is people start assuming I’ll become their expert on All Issues About This, and, instead of paying someone to deal with such issues, will just demand a lot of my free time and efforts into making them look better. (They also figure it will shut me up. I’m not good at that.)

I don’t mind too much with groups I’m a part of that don’t really have much money and are run entirely by volunteers or overworked staffers. I find these groups are both interested in what I have to say, and grateful for what (limited) aid I can give them. However, political parties have money. They also have power and prestige, even if they’re not currently running the country or the province. In Nova Scotia, they can work with the Nova Scotia League for Equal Opportunity and get actual experts to discuss with them actual ways of making their campaigns, their offices, their rallies, and their literature as accessible as possible.

But, since that’s not possible for everyone, let me give you some free (and lengthy) advice on how to make your campaign (however you define campaign) more accessible for people with disabilities. This advice has been influenced and improved by talking to the folks who run the Nova Scotia League for Equal Opportunity, and I can’t thank them enough for sending a representative to the Campaign School I recently attended.

Clearly, not every person with a disability is going to have difficulties accessing your campaign information. As well, this advice will not magically ensure that your work is available for everyone. We’re talking broad generalities here, but at least we’re talking something. And even though I am That Girl who will snap at you that your rally isn’t accessible if you don’t have an interpreter for the Deaf, I’m also That Girl who will notice that you’ve done something, and tell other people about it.

But, the biggest thing you can do, if you’re really trying to reach and include people with disabilities, is broaden your understanding of what disability means. We are not all men in wheelchairs and women who are blind.

Continue reading Campaigning: A (brief) Guide for Inclusion →