Tag Archives: advocacy

Recommended Reading for 12 November, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.

There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?

The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.

Frank Russo helps make music for the deaf.

Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.

The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.

Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.

As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!

…and I’m feeling good

This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.

I love mine.

Who Gets to Speak?

I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Today in Journalism: You Used the Wrong Lede

In Houston, an autistic student is being denied accommodations and his parents took the school district to court to fight. However, they ran out of money and were forced to drop the suit. The student, Chapuka Chibuogwu, remains at home, not receiving an education, because his parents didn’t have the financial clout to pursue his legal rights. This is a story that plays out in communities across the United States every day, with school districts pouring money into fighting suits filed by people who are only asking for the accommodations they are entitled to under the law.

Enter the media, which decides to frame this case in a number of, shall we say, interesting ways. Chibuogwu’s parents are immigrants, and there’s a heavy focus on the ‘broken dreams’ narrative going on here, with a side of ‘all immigrants can succeed if they try hard enough’:

Dreams brought Kenneth Chibuogwu to America and in time determination brought many of those aspirations within reach.

“I worked hard. I came to this country with nothing,” says Kenneth.

This is a common element I see in stories about problems immigrants encounter in the United States. There’s a myth here that this country welcomes ‘the right kind’ of immigrants, people who work hard and keep quiet, and these stories frame problems as simply personally unfair, rather than as evidence of more systemic issues. They remind immigrants that they just need to try and they will succeed in the United States, since obviously things like racism don’t present any obstacles at all to members of the immigrant community. These stories present the United States as a fundamentally fair, free place, as the pinnacle of human achievement, and makes sure to grab pull quotes to reinforce this:

“There was nothing I could do but cry because I was so shocked that such a thing could go on in this country,” added Neka [Chibuogwu’s mother] of the repeated conferences with Alief administrators ending in stalemate.

In this case, the school district turned around to sue the parents to demand repayment of the legal expenses it incurred fighting the original suit, and when it lost, it appealed. This isn’t personally unfair. This isn’t about broken dreams. This is evidence of a systemic problem. When a school district is so opposed to accommodating students that it retaliates with countersuits when people attempt to get the district to comply with the law, that’s indicative of deep, sustained ableism.

And, of course, this article includes lines like ‘…a child who will spend each and every day of his life challenged with autism.’ Never is Chpauka Chibuogwu himself represented, except as a shadowy figure at the fringes of the story. Interviews with both parents are present, but he is firmly relegated to the sidelines.

This quote is illuminating:

“What they are trying to do is send a chill down parent’s spine about advocating for their children,” says Louis Geigerman, president of the Texas Organization of Parents, Attorneys and Advocates.

Note that Geigerman doesn’t say ‘this case is being used to threaten disabled students who need accommodations.’ Not ‘this case is designed to send a clear message that disabled students are not deserving of accommodations,’ not ‘the fact that this school district is fighting this hard to deny accommodations is illustrative of some serious problems with our education system.’ No. It’s about the parents.

Now, obviously, a child being denied accommodations in school is probably going to have trouble self-advocating, for a variety of reasons, ranging from ageist attitudes to perhaps not having access to information about self-advocacy to being around people who refuse to communicate on the student’s terms. So, clearly, parents play an important role in securing accommodations for disabled children and in forcing school districts to comply with the law. However, the complete erasure of the student in this case, and in most cases like it, is really frustrating. It’s a reminder that people with disabilities are defined by the people around them, rather than existing as individuals.

The only direct reference to the student is this editorial line thrown in at the end of the story:

As for Chuka, he’s now fourteen, attends no school and for five years hasn’t received a single minute of the free and appropriate public education that is his right.

That should be the centre of the story. The denial of education to the student should be the focus. The fact that the school district is violating the law should be the focus. Persecuting his parents with lawsuits is definitely part of the story, and it’s an important part, since the decision to attack his parents for fighting for accommodations is illustrative of the way the district views disabled students, but the story isn’t framed that way. The story is framed as a hardship for the parents, with the student as an afterthought. ‘As for…’ is the line you use when you are making a throwaway comment. This student is not a throwaway.

Guest Post From Jesse the K: 20 Years and a Day for the Americans with Disabilities Act

Jesse the K hopes you can take a disabled feminist to tea this month.

I’d hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn’t even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.

So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a “regular” bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the “handicapped stalls.”) Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been — the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.

OK, that’s all about assistive technology, and there’s more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I’m stopping now).

The biggest change has not been in my body but in my perspective. In the late 80s, I’d been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people’s rights had been enshrined in law was hugely important to me. That the ADA used “mental illness” as an example finally tipped me into considering therapy.

So, thanks for my life, ADA: many mundane things, and a few great big ones.

The law is not enough; as Cal Montgomery taught me:

Discrimination is always illegal; only activism makes it unwise.

So thanks to these real-world colleagues and teachers, who enabled me to learn advocacy:

  • Caryn Navy, who was infinitely patient with my AB privilege, remade a corner of the world at Raised Dot Computing, and demonstrated dignity through snark
  • Chris Kingslow, who taught me that mental illness isn’t the end of the world
  • Catherine Odette, who published Dykes Disabilities & Stuff, founded Able Lives Theater, and gave me permission to take as long as it takes
  • Cal Montgomery, who decoded the disability studies stuff I couldn’t follow, made me laugh, and taught me that there is dignity in “behavior management,” as well as potential for abuse
  • Mike O’Connor, who held my hand while I took my first steps into the public square
  • Fayth Kail, who cranked open many minds as she served as an Assembly page in the state legislature while also campaigning for abortion rights, reminding me that advocacy has a life cycle

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Whose Voices?

There seems to be a bit of a theme these days of nondisabled people writing about the disabled people in their lives for the mainstream media. We had Sue Blackmore writing about her daughter Emily, who has anorexia, and Anne Miller writing about her husband, Michael Davoli, for example, and I’m sure there were countless other instances in the news in the last week or so, it’s just that these two jumped out at me.

This is a consistent and troubling theme in media discussions about disability. Anna touched upon this in ‘Making ‘Invisible Women’ even more invisible‘ recently as well, discussing an opinion editorial written for international women’s day by a nondisabled man talking about women with disabilities.

For nondisabled readers, I’m sure it’s very comforting to read about disability from the perspective of other nondisabled people. It’s a familiar zone. Common ground. But for readers with disabilities, it’s a repeat of the tired old story we’ve been hearing for years; people talk about us but they do not talk with us and we are not allowed to have our own voices.

These personal essays are framed as providing insight about living with disability, but really they are about what it is like to be a nondisabled person in a relationship with someone with a disability. Which is certainly a point of view which may be worth hearing at times, except that right now, it’s the dominant narrative. In the media, it’s not that hard to find examples of pieces by nondisabled people writing about living with people with disabilities. It is hard to find writing by disabled people discussing what it’s like to live with nondisabled people, and it’s hard to find people with disabilities writing about themselves and their own experiences.

In fact, it’s rather dehumanizing to reduce people to their disabilities, which is basically what these articles do. These articles are a reminder to reader that disabled persons are the other and that we are so peculiar and alien that we can only be written about. We cannot have our own voices; we cannot speak for ourselves, we cannot discuss our own experiences, we cannot push back against narratives which stick us in boxes and hide us away.

In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ‘such is life with my husband, who has Tourette’s Syndrome,’ or even just ‘such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from. After all, it’s not like people with disabilities could self advocate, right? It’s a good thing we have those nondisabled folks around to speak for us.

Many of these pieces have common elements. It’s so hard living with someone who has a disability! But I love ou anyway! There are so many obstacles and barriers I face! It’s a real struggle, being nondisabled. The authors write about having to advocate all the time, or having to use tough love, and nary a mention is made of self-advocacy. Of the feelings of the subject of the article. These articles often feel like they are all about the sacrifices the author has been forced to make to ‘live with disability.’

We are subjects. We are topics of study. We are topics of discussion.

What we are not is autonomous human beings. We are not capable of communicating for ourselves.

It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.

Is it because actually allowing people with disabilities to speak would destroy the carefully structured beliefs of nondisabled people? Would it make people uncomfortable to know that we don’t appreciate being fetishized, treated like objects, and silenced? Would allowing us a platform mean that nondisabled people have to confront their own ableism and the ableism inherent in a lot of these ‘caregiver writes about subject’ narratives?

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

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.