Description: A tree with signs showing wheelchairs with arrows pointing left and forward.

Chally is interviewed by BitchMagazine! There is audio, and a transcript!

My full-length interview with Chally, who talks about her love of sci-fi, why it’s problematic to have feminist “icons,” her experience as a teen in social justice movement, and of course, the internet.

Disability in Speculative Fiction: Monsters, Mutants, and Muggles

Fiction reflects social attitudes, and the social attitudes to disabled people tend to suck. Disabled people are presented as scary, pathetic, exotic, demanding, laughable, etc.

But some tropes are popular/unique to SF.

It’s not all bad: speculative fiction allows for powerful allegory, and can also make very interesting explorations/extrapolations of future attitudes/experiences of disability.

Elton John’s letter to Ryan White, 20 years after his death from AIDS

When the media heralded you as an “innocent victim” because you had contracted AIDS through a blood transfusion, you rejected that label and stood in solidarity with thousands of HIV-positive women and men. You reminded America that all victims of AIDS are innocent.

When you became a celebrity, you embraced the opportunity to educate the nation about the AIDS epidemic, even though your only wish was to live an ordinary life.

Ryan, I wish you could know how much the world has changed since 1990, and how much you changed it.

Is being an ordinary human possible?

How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category–the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid–the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story “Bent Not Broken” by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as “From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit–a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world” were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who “counseled” Manderson and secured life saving surgery for her dramatically states “I couldn’t live inside her body”.

Incarcerated Girls and the HPV Vaccine [United States]

Studies show that incarcerated girls are less likely to have health insurance and more likely to live in poverty than their peers in the mainstream population. These young women are often in the exact vulnerable positions described by Szabo and others.

Writing My Own

I learned the names of Immanuel Kant, Rosseau, and Sir Thomas More in secondary school. I cannot name similar modern philosophers from Asia. They are not taught, which led me to think they were not as important, not as good. In first year of university, my Introduction to Philosophy class textbook featured exclusively white men. A fine sampling of the thought that has shaped the Western-dominated modern world.

So when I wrote, I wrote characters and stories informed by what I consumed. They were cheap knock-offs of medieval romance novels, Forgotten Realms stories, and Disney movies. I only ever wrote a single character who was Malaysian, and she was my secret Mary Sue and had adventures that took her into otherworldly realms, never truly part of the Malaysian landscape.

The Life Expectancy of People with Down Syndrome

For most of history, then, the life expectancy of people with Down was very low. But, with advances in knowledge and access to health care, life expectancy has risen dramatically… especially for white people.

Canadians! Bill C-11, altering the Refugee system: signal-boosting to Canadians

“The government has recently introduced Bill C-11, legislation that would dramatically change the current legislation around Immigration and Refugee Protection. There are a number of problems with this legislation, which appears to have been drafted without input from key stakeholders. The Refugee Lawyers Association, Canadian Council of Refugees, Amnesty International, and the Canadian Bar Association all hold the position that this Bill should be referred to the House of Commons Standing Committee on Citizenship and Immigration BEFORE A SECOND READING. This provides the best opportunity to make amendments to the Bill.

I have contacted my MP (by email) and am forwarding a “model” letter in case you wish to contact your MP. The letter (put out by the Canadian Council for Refugees) outlines some of the main problems with the legislation, which will make it much more difficult for refugees to get a fair hearing in Canada. If you have the time and agree with the issues below, please contact your MP as well.

As I’m writing this, I’m still on my trip, so again – very quick! [The conference has been awesome, y’all. Seriously – I met so many great people and had so many great conversations. And people liked my presentation!]

The Lady Thing I Won’t Talk About, Even With Feminists

So, I have been thinking (ahahaha, I know, right? I NEVER do that). And it was because of the Jezebel post about the MTV True Life episode, which I just watched, on Body Dysmorphic Disorder.

And, you know, it’s MTV, so it’s not the most tasteful or thoughtful show, but: I don’t really want to talk about reality TV. I was thinking about how being feminist and being aware of privilege makes me really struggle with my own BDD.

I was diagnosed four years ago. It’s definitely gotten worse as time as gone by, and exponentially worse after the rape. It’s also not a disorder that stands alone; it ties in to my bipolar disorder, my anxiety problems.

Autistic Teen Charged With Assault, Disorderly Conduct

Via Terri over at Barriers, Brigdes and Books comes news that an autistic teen was charged with assault and disorderly conduct a few weeks ago, after he became physically aggressive when there were four fire drills in one morning at his school. We do not know whether an appropriate behavior intervention plan was in place, as should have been the case.

I’ve Gone and Done It Now

I have written a manifesto. It’s short as manifestos go… and I think fairly low on scary ramblings (edit, edit, edit!!! 🙂

Here it is:

I believe in the Disability Rights Community.

That is to say, I believe that disability is a natural part of the human experience that is often misunderstood by our culture and I believe in the people with disabilities and their allies who recognize that human beings are undiminished by disability. I support these people who strive for respect, recognition and rights.

Arizona’s Immigration Laws

I came here to study at a university. I took a job from approximately 299 Americans who, presumably, could have done it as well as I did. (Interestingly, the other person on the shortlist told me that he believed hiring me was an act of discrimination and that I had “dogged” him.) I have brown skin. I married an American. I was told I was only into him for the visa. (Almost 20 years later, I still worry about whether I have to prove our relationship is genuine.) I use the health care system. I have paid my speeding ticket and been to traffic school. I pay my taxes. I very definitely pay my taxes; I have been audited and found to owe nothing. And a little while ago, I began the process to naturalize myself as a citizen.

Spending a Moment with You

If you live with a disability, I encourage you to speak up about your experiences. Make a YouTube video, start a blog, participate in a message board. And let me know about it.

I look forward to spending a moment with you.

This is going to be a quick one from me as I’m out of town right now, attending a Graduate Student Conference on Disability Studies, because my life is awesome. I can’t wait to tell everyone all about it, at length.

Disability Blog Carnival 65: Balance is up at The River of Jordan! The posts are, as always, varied and wonderful.

Eyesight to the Blind [Problematic language in title – see Rainbow’s comment]

When my great-aunt says she’ll pray for me, she’s not saying it because there’s something messed up about me that needs fixing. She’s saying it because she prays for the people she loves. The person I encountered today wasn’t saying it to everybody she passed. She probably saw a person using a mobility scooter and thought something like “disabled person = in need of healing”.

What would healing look like for me?

Tributes paid to David Morris

Tributes have been paid to David Morris, much-loved and respected disability campaigner and mayoral adviser, who passed away yesterday (Sunday), aged 51.

Mr Morris, who was on secondment from his role as Senior Policy Advisor on Disability to the Mayor of London, had been working with the London Organising Committee of the Olympic Games (LOCOG) as External Access and Inclusion Coordinator.

Wild Ride for Number 9

In the end, the name was the same atop the wheelchair division of the Boston Marathon yesterday, but for Ernst Van Dyk it hardly was a typical triumph.

The South African won for a record ninth time, but it was his toughest victory yet. Van Dyk had to surge over the final 2 miles to overtake American Krige Schabort to finish in 1:26:53, a mere 3 seconds ahead of Schabort.

An Open Letter to Charles Tan

When I read your essay you seemed to define promoting cultural diversity by “encouraging people to write about other cultures”. Certainly Buck was encouraged and rewarded – she received a Pulitzer in 1932 and a Nobel Prize in 1938 “for her rich and truly epic descriptions of peasant life in China”. If writing about the Other were such a truly prodigious feat, then surely Vikram Seth should be bestowed with more renown for not one, but two books, set entirely in white people western land?

But transcultural traffic is hardly such an egalitarian affair. You say: “That there is a small but growing awareness of the literature of other cultures is, in my opinion, a liberty that only occurred because of humanity’s continued struggle for “enlightenment” but this flies in the face of a vast body of historical evidence that cultural currency has been a tool of capitalist trade and colonial enterprise. Furthermore, by whose standards are you defining awareness of such literature “small”? There are many Indians who will tell you about Rustam and Sohrab, about Laila and Majnu–stories not actually from our subcontinent. And as Fatemeh Keshavarz points out, Iran has a long history of translating books into Persian.

Follow-up on the Clitoraid post earlier this week: Clitoraid responds to their critics, but key questions remain unanswered

Clitoraid have officially responded to questioning of their organisation and the controversial ‘adopt a clitoris’ fundraising scheme (a summary of discussions to date on this topic can be found here).

On Being Well

Not every disability can be healed. I learned long ago that being “incurable” and being well are possible. But don’t go looking for this anomaly in the rule book. In effect what you need to do is break the rules that have long been established for how to think of being well. I am for instance the best blind sailor in my family. Never mind that I’m the only blind sailor in my family. I did in fact teach my sighted wife how to dock a boat. There’s no rule book for this.

Disability as a Game

In the coming months my children will come to know the terms disablest and able-bodied privilege, because it has become clear to me that while they are empathetic of my personal circumstance because they love me, they are not aware that this very same empathy needs to be extended beyond our little family. Not only do the differently abled have a right to take up space (a struggle they have seen first hand), we deserve not to have our lives mocked for the purposes of entertainment or to deliver a cruel retort.

Top 10 Things That Annoy People in Wheelchairs

In a recent poll done by the Christopher & Dana Reeve Foundation, wheelchair users were asked :

What do family, friends, and strangers do to you when you are using your chair that annoys you?

The Virus-Ridden DNA of Aborted Babies

Well, a new group of people has joined this fight. Rather than being autistic-adults, parents of autistics, or researchers, this group has little personal contact with actual autistic people. Instead, it is one group of pro-life people wanting to use autism as proof of why abortion should be outlawed – never mind that it has no basis in fact!

Description: A blue-painted brick wall parking stall with the disability-symbol of a white wheelchair painted on it as well. – edited after comment from noracharles.

Today is the deadline for the Disability Carnival
Check out River of Jordan for more information!

Out of the mouths of babes

Without answering he calls to the guys on the platform a couple floors up. He wants them to move the machine. I can see what a hassle this is. They are going to have to lower the platform, move it a few feet so I can get on my way, move it back so they can be back in position and then raise it back up to where they are working. I felt immediately like this huge bother. But the driver glanced down and saw me and hollered that he’d move the truck.

The platform lowered, it seemed to come down at such a slow pace, I could feel my hair grow as I waited. Joe, who really hates it when we bother people or put people out is standing a few feet ahead looking very perturbed. Once the platform is down, the fellow moves it two or three feet ahead, plenty of room for me to get around. I call out as I’m going around, ‘Sorry to be a bother.’

On growing up with strange sensory reactions, and the difference between passing and being passed off.

This is one reason that I question the entire concept of passing. I rarely spent five minutes around other children before they figured out I was different. Often it was more like five seconds. Kids weren’t generally picking up my intellect or nerdiness (they might pick that up later but not immediately), they were picking up my strangeness. Much of the time they said so quite openly and as we got older they were trying really hard to explain why I was strange. But I was always strange, there was never a point even when I did my best attempt to “behave” that this was ever in question. Even when neuroleptics drastically tamped down on my ability to explore my environment in those ways I could expect to wait seconds before I was pointedly and often out loud judged as some kind of Other. Even among kids in mental institutions where the rate of neuro-atypicality was higher, I only very occasionally connected with anyone and it was always their doing, others just either shunned me or found ways to do harm to me.

Weird thing is even though I heard all about being strange my whole life I always underestimated my strangeness. I rarely connected all the dots in others’ reactions to me. I knew I was different but since I couldn’t imagine how all the things I did looked to others, I assumed I was “normal enough” largely because of that and because I was always around myself and therefore found myself… not boring exactly, but like I was used to me. The same way I never knew my autistic brother stood out that much even though he did (although more in the stiff/nerdy way than the sensory/strange way, we are very different people).

Via Penny in email: groping

This wouldn’t be particularly notable, but today I read in the NY Times Magazine of a study that aims to find out what men’s “real” preferences in women’s body types are by toting around headless mannequins of various dimensions for blind men to grope. Hmm, how many things are wrong with this study?

Via Jonquil: Betty Dodson and Audre Lourde: Can I possibly use the master’s tools to demolish her house? [Post uses blindness as a metaphor, questions of sanity as a metaphor]

Then there is the disturbingly unquestioned position of authority that Betty holds on all things sexual. Reproducing patriarchal systems of hierarchical power, it seems she has reached to far high up the ladder that anyone who dares ask a question is a pariah whose sanity is to be questioned. I had never heard of her before this Clitoraid thing and so it was in naivete that I questioned her ‘expertise’ on the issue of Female Circumcision. Woe unto me for daring.

I have to admit that it is with sadness I wonder out loud if this the cutting edge of North American feminism? Is it that the sum total of feminist thought and mobilizing is about pleasure? We’ve made the entire experience of womanhood all about what is between our legs and not between our ears and in our hearts? That the respect so necessary in building the bridges of sisterhood is to be abandoned because one ‘expert’ must be venerated?

For Want of a Menu Button

The student center building at my university has a couple TV lounges set up for students to use. Through no fault of the student center, the manufacturer of the TVs did not include any sort of ‘menu’ button on the front of the TV itself– so it’s impossible to turn on captions without the remote, for viewers who may need it.

Talking about injury in dance

Equally as salient, for me, is managing the overlap between disability and injury. When I first separated my shoulder, someone sent me a request to participate in a study, the basic question/thesis of which was (whether) disabled dancers get injured more than non. I didn’t participate because I felt the supporting materials showed some bias towards suggesting that disabled dancers were more of a liability. (And, yes, I was feeling pissed off and vulnerable at that time.) I imagine that many of the things injured dancers do to take care of themselves (as if self *were* the injury) are the things I do on a daily basis in an attempt to keep the worst of the symptoms under control. Am I injured? No. But I do live my disability life as if I were. In a weird way, it prepares me for the twists and tweaks of dance injury.