Remembering Stella Young

Stella Young died one year ago today. She is still my favorite well-known disability activist, writer, and role-model, and I miss her voice and her “cracking brain” so much.

I wanted so much to re-post some amazing videos from Stella’s Memorial Service in Melbourne, Australia, but it turns out the Australian Broadcasting Corporation owns those videos, and though they are still on YouTube, they can’t be viewed here in the United States. What the hell?! That really pisses me off!

Instead, I’ll share my two favorite pieces of Stella’s writing:

A letter to my younger self

Stella Young’s letter to herself at 80 years old

Her TED Talk on “Inspiration Porn” is essential:

I would so love to hear what Stella would have to say about Kylie Jenner.

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I’ve been away from Tumblr too long.

When I started disability blogging 2 years ago, I also started reading disability-related Tumblr blogs more or less daily. It helped me get a feel for, I suppose, a younger, more spirited, less careful community of disabled people. I carried on with regular Tumblr reading until maybe 6 months ago, and then for some reason fell out of the habit. I kept posting to my own Tumblr, but only rarely latched onto or “liked” other stuff on Tumblr.

I found the following this afternoon, a reblog by WheelieWifee, of an April post at Words N Stuff:

1. Ignore their stares. You owe no one an explanation.

2. If they are rude, be witty. If they are rude, be sarcastic. If they are rude, be ruder.

3. Never sacrifice yourself for their approval. You don’t need it.

4. Laugh in the faces of those who call you “faker,” those who call you “scammer,” those who call you “liar.”

5. Walk as slowly as you like. Let them sigh loudly behind you - you are doing nothing wrong.

6. If they’re in your space, tell them. If they don’t move, make them.

7. Don’t feel obligated to “look sick.” Don’t feel obligated to “look well.” Don’t feel obligated to look any which way except how you do right now.

8. Use their words against them. Take the ones they hurl at you and embrace them. They are yours now.

9. Flaunt your “imperfections.” Show off the things they hate. Put stickers on your braces and tattoo the hip that never stays in place. Don’t let them ignore you. Don’t let their eyes slide over you.

10. If they hurt you, if they slip past your defenses and under your skin, if their ignorance is more than you can handle. If they hurt you. Don’t let them know.

cripple punk

april 26/30//q.e.l.//

I don’t agree with every bit of it. For instance, I think that if “they hurt you,” it’s sometimes important to “let them know.” But it’s all good stuff to think about. It’s the sort of thing disabled people who are still struggling with their disabilities and internalized ableism need to read. I’m talking about youth with disabilities, and people of any age dealing with new disabilities. Parents and families should read it, too. It’s the nuts and bolts of disability pride, in very concrete, non-theoretical words.

Must not forget Tumblr.

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Video Of The Day

Ask A Girl In A Wheelchair

Jared Sosa, BuzzFeed - March 29, 2015

I have to offer a light rebuke to Mr. Sosa, for saying that Santina has “been in a wheelchair since she was 5 years old.” I’m not sure, but I suspect that at the time of filming this, she’d been in a wheelchair since she got up that morning.

I found this because Tonia of "Tonia Says” linked to it and gave her own interesting answers to the questions Santina answered.

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For Senate

Iraq War Vet, Double Amputee Tammy Duckworth is Running for Senate

Mark Murray and Carrie Dann, NBC News - March 30, 2015

As a Democrat and a disabled person, I am very excited about Rep. Tammy Duckworth running for Senate. I think it’s also interesting that her opponent, Sen. Mark Kirk, is also disabled … recovering from what I recall was a very serious stroke. How will the disability factor play out when both candidates are disabled? Do Duckworth and Kirk have different perspectives on their disabilities? Do they talk about them differently from each other? Or, will their individual approaches to disability just cancel each other out, making disability entirely irrelevant? I look forward to finding out.

I am also thinking that it might be fun to start following all of the major 2016 election campaigns that include candidates with disabilities. I don't tend to think that having more disabled people in Congress or more disabled Governors would necessarily make for better policy, but more of us being in office might have broader, more abstract positive effects on the disabled community.

In any case, following the races might be fun.

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Jane Hawking’s Not-Bad Idea

Jane Hawking: support disabled people using money from tax-avoiding firms

The Guardian - March 11, 2015

“The Theory Of Everything”, the film about Steven Hawking that won Eddie Redmayne an Oscar this year has caught a lot of flack from the more activist parts of the disability community, including me. In brief, we’re tired of non disabled actors winning awards for playing disabled characters, especially when disabled actors can’t get work. Plus, we hate to see tired old clichés repeated, such as the scene where Hawking … while being recognized for his astounding achievements in physics … dreams of walking again. Forget being one of the most recognized and admired physicists of all time, I just wish I could walk over and pick up a pencil.

All that aside ...

I was really impressed that Jane Hawking, Steven’s first wife who is also portrayed in the film, used a gala reception at Buckingham palace, for a very traditional disability “charity”, to suggest that what disabled people in the UK really need is better support from their government. Usually, these charity “dos” are all about raising donations for a cure, and are carefully apolitical. It’s one reason why so many disability advocates shy away from traditional charities.

Jane Hawking’s proposal is pretty vague … to use funds from companies that don’t pay taxes now to fund better support services. But it is radical and refreshing for her to even mention systemic change and economic justice in a high-profile charity event.

For what it’s worth, I don’t think we have ever heard anything so specific and political from Dr. Hawking himself, who when he talks about disability tends to stick with a very personal perspective and a somewhat blandly neutral tone. I’ve always kind of liked that about him, that he neither bemoans nor romanticizes his disability. It would be helpful, though, if he had more to say about disability in general, and the status of disabled people in society.

Anyway, I just think that Jane Hawking deserves some praise for her observations, and where and when she chose to make them. More like this please.

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Video Of The Day

It has been quite awhile since I posted anything about the Disability Visibility Project, so I’m so glad to have a chance to post this video by the project coordinator, Alice Wong:

This presentation was given at a conference at the University of California at San Francisco, Developmental Disabilities: An Update for Health Professionals. I stumbled upon this conference on Friday, when I noticed lots of Tweets about some of the sessions. I was hugely impressed at how many speakers the conference had who focused on the cultural and social justice sides of disability, alongside the more clinical content one would expect at a conference aimed at the medical profession.

I’m going to post more about the conference tomorrow.

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Stella Young Memorial

Stella Young memorial: 'Stella made this place better ... she made Australia better’

Melissa Davey, The Guardian - December 18, 2014

A memorial event for Stella Young was held on Thursday, December 18, in the Town Hall of Melbourne, Australia.

I don’t have anything to add really. Just watch the videos.

Nelly Thomas

Graeme Innes

Stella Barton

Memorial

Via the CP Shoes Tumblr.

The Best Stella Young Tribute

Dear Stella Young, the world has lost its fizz without you, love Benjamin Law

Benjamin Law, The Age - December 8, 2014

I have been really impressed with how the ABC (Australian Broadcasting Corporation) and other bloggers and news outlets have written about Stella Young after her unexpected death. I have seen barely a whiff of either “inspiration porn” or morbid fascination with the details of her disability. The ABC’s articles were loving and respectful.

Still, Benjamin Law’s article is by far the best tribute I’ve read so far.

Another Teacher Lost

Stella Young has died, unexpectedly, at the age of 32. I am shattered. So are a hell of a lot of other disability folk on the Internet.

In a fairly recent TED Talk, Stella pushed back against disabled people being called “inspirational”. A few commenters here and there had the audacity to say that her TED Talk was inspirational. Honestly, I get where they were coming from, but really, Stella wasn’t “inspirational”. She was “fucking amazing”. There’s a difference.

To me, Stella was another teacher. Mostly through her writing, she taught me to really believe rhetoric that I had previously just recited, about disabled bodies … disabled people ... being beautiful.

The George Takei "Controversy": My Two Cents

An Open Letter to George Takei

Mommy Misadventures - August 4, 2014

This is NOT funny
Living With Bob (Dysautonomia) - March 12, 2014

This Is What Disability Binarism Looks Like

That Crazy Crippled Chick - December 23, 2013

George Takei posted this on his Facebook page and on Twitter. He didn’t create it … it’s been floating around since at least last Fall. He thought it was pretty funny I guess, and added a little quip of his own that kind of doubled down on the joke.

Lots of people criticized the joke, because it depends on factual misconceptions about disabled people. Just to pick one … lots of people who use wheelchairs to get around can, actually, stand or walk a bit when they need to. Okay, one more … disabled people can enjoy an adult beverage, too, and there’s nothing surprising or disreputable about it.

Instead of just apologizing or maybe saying something like, “Hey, wow. I didn’t think of it that way. Sorry about that. And thanks for letting me know!”, Mr, Takei, who is at this point almost as famous as an advocate for progressive causes and battling homophobia as he is for having played Sulu on Star Trek, resisted calls to take it down, saying that critics should take their comments “down a notch”. He also claimed that since the joke does have multiple sides and interpretations, it would spark valuable discussion.

Well, maybe. But when he posted it, Takei wasn't spurring discussion, he was making a cute joke.

It's far from the worst example of ableism, so I don’t have much to add.

Ah, who am I kidding …?

I am more bummed out by Takei’s response to the criticism than I am by the joke picture itself. Don’t get me wrong, the joke is entirely dependent on serious and common misconceptions about disability … misconceptions that make life a little more painful for those of us with physical disabilities. Non-disabled people may find it hard to imagine why this simple stereotype would actually be painful. I’ll explain it, from personal experience.

When I was in college I used an electric scooter to get around campus. It was too small a place for driving, but too big for me to walk. So the scooter was the key to my ability to attend college and do all the college things. Yet, more times than I can count, I would worry a bit in the back of my mind whenever I stepped off the scooter, because it felt like people would see that and, if they didn’t know me, judge me as lazy or faking it or something.

Also, I went for years without using “handicapped” parking spaces because I was afraid of what people would think when I got out of my car and walked into a store. I use a permit now, but I still feel weird and embarrassed when I catch someone looking at me for an extra few moments as I leave my car on foot. I feel like I have to explain myself, which would just be weird, so I don’t. Instead I just have a moment of anxiety. Which isn't horrible or anything, but it's something I don’t need. I don’t think anyone needs more shame, embarrassment, or anxiety in their lives.

Add to this the fairly common (though never discussed in polite company) sub-stereotype that certain disabled people are also personally messed up and dysfunctional, with screwed up priorities that lead them to waste money on booze, when they should be trying harder to be healthy.

So, the joke isn’t grossly offensive, but it isn’t okay and it deserves criticism. My take can be summed up as: “Dude, not cool."

Takei’s response is more upsetting because it is something of a pattern … not with Mr. Takei particularly, but with lots of people who are generally progressive and care about oppressed and marginalized people. It seems that people Takei have well-tuned radar for every form of prejudice there is, except ableism. They probably know what ableism is, but they don’t recognize it when it bites them in the proverbial ass … or comes out of their literal mouths. And, when they are called out for it, their first reaction is the kind of defensiveness they would normally criticize in others for different prejudices.

I think it’s because they can’t conceive of the possibility that they, themselves, might harbor unexamined prejudice. Prejudice is for ignorant people and right-wingers, after all. Right? So, against their better judgment and contrary to their usual beliefs about giving offense and apologizing, they defend themselves with the same kind of self-justifying, bogus free speech, creativity, nonconformity crap that others use to defend rape jokes and stale ethnic humor.

I am finally coming to realize that one of the many features of with living with a disability and being awake to ableism is being disappointed by people we greatly admire for their other, more progressive views, but who seem to view ableism as no big deal.

ADA 24th Anniversary

24 years ago today, President George H. W. Bush signed the Americans with Disabilities Act into law. Here are some videos to help you celebrate!

"Criptiques" & "Criptionary"

Criptiques Podcast Episode 3: Maria Palacios

Caitlin Wood, Criptiques - July 23, 2014

There's another great "Criptiques" interview out! Follow the link above to hear Caitlin Wood interview poet, performer, and disability activist Maria Palacios. Someone should really collect writings from all of these amazing people Caitlin is interviewing, into some sort of book. Oh, wait ...

During the interview, Catilin and Maria refer to Maria's book, "Criptionary". I haven't read it yet, but I have read a few sample definitions from the book, and they're hilarious.

If you want to know a little more about the book before you buy, visit the "Criptionary" Facebook Page.

Video Of The Day

Via the CP and Me - A Tale Of A Trex Tumblr blog.

“Inspirational”? Technically, yes … although that word is so cliché and inadequate that when applied to a disabled person, it’s borderline insulting. It reminds me of when a certain era of “liberal” white people would compliment a prominent African-American, like, say, actor Sidney Poitier, by calling him, “a credit to his race”.

Sorry, just a grumpy aside.

This is amazing and it about blew my damned mind. I especially liked seeing how she handled needing some help, and how that was depicted.

Music For A Saturday Evening: "The Thunder God"

I write a lot on this blog about life-long disabilities, mostly because that’s my personal experience. Of course, millions of disabled people experience disability as a sudden intrusion that can derail the lives they thought were ahead of them. Then there are the relatively few who have the perseverance, creativity, and support they need to take a brief detour, but ultimately get back on their original track.

I wasn’t a huge heavy metal fan in the summer of 1987 when I listened to a special radio introduction of Def Leppard’s long-awaited album Hysteria, while unpacking for my "Sophomore Summer" semester in college. So, I was only vaguely aware of what the band’s real fans knew was special about the album. Not only was it way overdue, it was overdue in large part because the band’s drummer, Rick Allen, had lost his left arm in a car accident, and the band had, basically, waited while Allen re-learned drumming on an adapted kit. Even after I heard the story, I just sort of noted it. I wasn’t really tuned in to disability as an “issue” then.

It wasn’t until just after the Americans with Disabilities Act passed that I realized that Def Leppard had, essentially, provided Allen with a pretty massive “reasonable accommodation” to an sudden disability. They could easily have parted ways with him … offering prayers of support and sad farewells, and debuting a new drummer. They weren’t stuck with Rick. They chose to stick with him, and he to the band. And a key to that was ingenuity, adaptability, and an understanding of teamwork that doesn’t see people as simply interchangeable cogs.

Def Leppard is decidedly classic “Dad Rock” at this point. I don’t think they were ever the best band in the world, or inherently better than “the bands kids listen to today”. But they were very good, and very successful, and certainly never paid a discernible price for not leaving Rick behind, in an incredibly competitive and fast-moving industry. Heavy Metal and Pop Metal are very emotional, almost sentimental genres, and a story like Rick Allen’s still to this day provokes what one YouTube commenter calls “man tears” … a.k.a. “Inspiration Porn”. It’s hard to sustain the sentimentality, though, when the product is this particular music.

I still love it, once in awhile.

Photo Of The Day

From The Romantic Movement Tumblr blog, via Sick Days.

Frida Kahlo (1907.07.06-1954.07.13)

"Let Us Now Praise Famous Men"

Pioneer in aiding disabled mourned

Bob Gardinier, Albany Times Union - June 28, 2014

I ran across this article almost by accident, but I found it fascinating in I’m sure a completely different way than what was intended.

Let me say first that I don’t know anything about Mr. Fitzgerald, or about the agency he apparently gave so much of himself for, the Center for Disability Services in Albany, New York … not that far, really, from where I live. For all I know, he was probably completely sincere and well-intentioned, as selfless as his friends suggest he was, and even progressive in his view of disability, at least in the context of his life and times.

That’s just it though. The whole article feels diffused with a very old-fashioned, back-slapping, golf-tourney, rich guys doing good vibe that seems more in line with a Jerry Lewis Telethon than with an ADAPT protest, or even a modest Center for Independent Living.

I’m really not trying to be mean, but the article, unintentionally highlights not only a difference in philosophy … the Center has a sheltered workshop where Mr. Fitzgerald’s own son works, for God knows how long … but in tone and personality between “your grandfather’s” disability agency, and the consumer-driven, activist organizations of today. Except that it isn’t really yesterday and today. In many cities and towns the two kinds of disability agencies live side by side, rarely battling each other directly, but eyeing each other with suspicion and perplexity. In general, they also tend to have entirely different bases of support, and cleanly separated spheres of influence and awareness.

Anyway, I realize that’s a lot to get from a the obit for a local benefactor, but boy did it come through to me loud and clear.

Meeting Harper

Credit: Archie Comics

Meet Harper: The First Archie Comics Character With A Disability

Jessica Goldstein, Think Progress - June 5, 2014

I am not a comics person. I think I read an "Archie” comic once when I was 8. Still, I’m vaguely aware that the "Archie" world is a deliberately wholesome, positive, nostalgic portrayal of high school. Given that, the addition of a character with a disability to the "Archie" lineup means something more than just representation.

If Riverdale High School is an ideal world, and Archie's gang is an ideal group of high school friends, and that ideal group now comfortably includes a person in a wheelchair, then that really does reinforce the normalcy of disability. It also looks like the new character, Harper, will include some important details that are often missing from more obviously deep disability portrayals … such as the fact that many wheelchair users do sometimes walk a little bit.

The Think Progress interview with Archie writer and artist Dan Parent is an interesting read. I’m not sure how I feel about the fact that they chose to model their character on a particular person, though Jewel Kats seems like a pretty amazing role model. Maybe it’s better for non-disabled artists to ground their interpretations in people and situations they happen to know personally than to speculate on what other experiences might be like just to get a more challenging portrayal. I would love to see a disabled character in a comic like Archie born with a disability, or one who has more obvious struggles with independence and social stigma. Harper is an easy character to digest; she seems to be pretty, charismatic, talented, and rich. In another setting this might be considered a cop-out, but in the “Archie-verse”, Harper seems like a real milestone.

I doubt I’ll start buying Archie books, but I will keep an eye out as time goes by to see how Harper fits in … at with the Archie gang, with readers, and with the disability community.

Criptiques Podcast Episode 2

Criptiques Podcast Episode 2: Cheryl Green

Caitlin Wood, Criptiques - May 28, 2014

F*cking amazing. In less than 30 minutes, host Caitlin Wood and guest / Criptiques anthology contributor Cheryl Green bring some of the most fundamental concepts of disability culture and politics to life.

For example: Cheryl Green peels apart an old chestnut slogan about disability:

“People need to get with the program and see us as valuable, complete, whole human beings. And it’s not, 'See my ability, not my disability!' I find that treacly shit to be bullshit. I think that is so silly, 'See my disability, not my disability!' First of all, if you don’t see my disability, I’m not going to get any accommodations. Second of all, c’mon now, how are we going to hide this, you know? And third, why in the hell should I be expected to hide it? Why should one kind of person be encouraged to be proud of some part of their identity, but if it’s a disability, 'Oh, don’t see it, nope, we didn’t see it! Don’t talk about it. It’s bad!' No, it’s not bad. Maybe it’s hard, but it’s not bad.”

Cheryl is also hilarious and on-target in her critique of "disability awareness" ... where it comes from, what it's for, and the bizarre stunts it inspires.

This is more essential listening for people new to thinking about disability, and for people who think they have disability all figured out!

Memorial Day Post

Reach For The Sky (1956)

"The true story of airman Douglas Bader who overcame the loss of both legs in a 1931 flying accident to become a successful fighter pilot and wing leader during World War II.”

When I was a kid, I went through a Second World War aircraft enthusiast phase. So, I’ve known a bit about Douglas Bader since I was very young. Memorial Day seems like a good occasion to think about him as a war hero and a fairly traditional but still kind of thrilling disability role model. Here are the highlights of Douglas Bader’s story as outlined by Wikipedia:

• In 1931, Royal Air Force pilot Douglas Bader crashed while attempting low-altitude aerobatics. He underwent surgery during which one leg was amputated below the knee and the other above the knee.

• After a lot of painful rehabilitation, he walked again with prosthetics, drove an adapted car, and was able to fly again. It looked as though he could continue to be an RAF pilot, but despite proving his flying ability, the RAF “invalided” him out of the service, reportedly because there were no regulations to address a situation like Bader’s. It wasn't the first or last time bureaucratic technicalities were the cause ... or excuse ... for a disabled person's lost opportunity.

• He re-joined the RAF just before the outbreak of the Second World War; this time, he was accepted as an active pilot. During the war he scored 20 “victories” (planes confirmed to be shot down). That's a lot.

• In 1941, he crashed over occupied France. As he was bailing out, one of his prosthetic legs got caught inside the cockpit. By opening his parachute, the force snapped the prosthetic’s strap, which freed Bader from the falling airplane … leaving his prosthetic behind of course.

• Bader was taken prisoner by the Germans. Initially they treated him well, even arranging safe passage for British planes to drop replacement prosthetics for Bader. Still, he kept trying to escape, sometimes almost succeeding. In the end he was sent to Colditz Castle, an “escape proof” POW prison. He was liberated in 1945 by the First United States Army.

• In 1976, Douglas Bader was honored by the Queen in 1956 and 1976 for services to disabled people.

• Nobody’s perfect. Bader was a “staunch” Conservative who supported racist and apartheid governments in Rhodesia and South Africa, and often spoke out against trade unions and anti-nuclear campaigners in the United Kingdom.