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:

Her TED Talk on “Inspiration Porn” is essential:

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


Disability Day

United Nations symbol, white lines against a dark blue backgroundToday is the annual United Nations International Day of Persons with Disabilities, which has included a whole slate of UN sponsored speakers and events, and a whole lot of social media activity calling attention to disability as an important identity and issue world-wide. As “day-days” go, it’s definitely a step or two above the scores of semiofficial days commemorating postage stamps, snack foods, and other trivia. This is really A Thing.

This year’s themes for the day are:
  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development
The first thing that came to my mind is the status of the UN Convention on the Rights of Persons with Disabilities. The United States signed the treaty, but the Senate hasn’t ratified it, so our participation in it isn’t actually in effect. Most other countries in the world have fully ratified this disability rights treaty. The United States is in fine company balking at fully endorsing … along with Libya, Chad, Uzbekistan, Kyrgyzstan, and North Korea. A few more Senators should probably get over their bizarre superstitions about UN officials micromanaging parents’ relations with their disabled kids, and ratify the damned treaty already. The United States is the world’s leader in disability rights … it really is. It’s about the last country on Earth that should worry about disability rights being included in international law.

Click Here for a map showing the signatory and ratification status of all participating countries.


Access or Awareness?

Logo of BBC Ouch: Disability Talk
BBC Ouch: Disability Talk - September 3, 2015

The always excellent Ouch: Disability Talk podcast from the BBC recently spoke to three people with cerebral palsy who live in Japan, about what life is like in Japan for people with physical disabilities. All three live in Japan by choice, having moved there from the United States, the United Kingdom, and Canada. All three love living in Japan. They specifically praised Japan's accessibility and plentiful transportation. All three said they have much more freedom and mobility living in Japan than they ever did at home.

On the other hand, while they cited the fundamental hospitality and friendliness of Japanese people, especially towards “western” visitors, the expatriates all spoke of encounters with Japanese culture's explicit and unashamed ableism. Disabled foreigners are treated well, because Japanese people love guests and find westerners fascinating. Disability, however, is widely and openly viewed as ugly and embarrassing … an unsightly disruption to the smooth, calm exterior appearance of a deliberately conformist society. While ableist discrimination happens everywhere, in the US, UK, and Canada, there is at least a general agreement that disability discrimination is wrong, something to be frowned upon, hidden or disguised. In Japan, disability discrimination is considered natural and more or less logical. For instance, in Japan, it’s considered perfectly fine to deny a job to a wheelchair user, for no other reason than that a disabled person might be disruptive and upsetting to others.

I am fascinated that all three of the disabled people interviewed clearly love living in Japan, and feel that the country’s better, more accessible infrastructure more than compensates for the society’s often stunning lack of “disability awareness.” This has implications for the long simmering debate within the disability community between two apparently competing priorities: accessibility vs. awareness.

People who focus more on accessibility and other systemic justice issues say that if our infrastructure and laws are good for disabled people, then peoples' individual prejudices won't matter so much. Others argue that ramps and non-discrimination laws by themselves don't bring true equality, which depends in the end on how well people understand and accept disability.

My own perspective has always been on the accessibility side of the argument. If I had to choose, I would prefer a more accessible community that is less understanding, to community of compassionate people "aware of" disability, but full of physical and systemic barriers. The three people interviewed seem to agree, but I wonder if they will still feel the same in a few more years. What if the novelty of excellent accessibility wears off, while the persistent ignorance of neighbors and colleagues grinds away at your soul? Living in a wheelchair-user's paradise might not be as great as it seems to be at first.


Keep Your Eyes On The UK

Photo of a 20 dollar bill being cut in half with scissors
There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:
"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."
This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.


Catching Up On "Ouch"

BBC Ouch: Disability Talk logo
A couple of evenings ago, I decided to catch up on a backlog of podcast episodes of Ouch: Disability Talk, the BBC's program dedicated to disability issues and culture. I keep forgetting how good the show is.

The hosts seem to have similar beliefs about disability as the activist disability bloggers I read, but they sound like they don't have to try as hard to express those beliefs.

They are casual and breezy ... aware, but not angry.

They are plain spoken, and steer clear of insider jargon.

They don't reject so-called Political Correctness, but they seem less anxious about it than one might expect.

Ouch gives equal voice to a broad spectrum of disabled people, including some with beliefs and ways of talking about disability that I don't like, that make me uncomfortable. Everyone gets a fair chance to say their piece. Meanwhile, the hosts ask probing questions, but don't pass judgment.

Of course they are British, and I like the way they say things, one minute funny:
"I was like, shuffling around like a granny, even more than I usually do."
The next, insightful:
“I think it’s true that people do want to get diversity. But it’s almost as if people want the “easy” disabilities ... I put that in very marked quotation marks … but you know they don’t want to deal with complex disabilities where lots of changes have to be made."
Ouch's hosts and guests often state flat-out some things we often think, but struggle to express:
Interviewer Kate Monaghan: "Surely all parents just want the best for their child?"
Guest Tracey Abbott: "Ah, all parents want their child to be as safe as they can be, and happy. That doesn’t necessarily equate to them going out and getting a job."
It's worth noting that later in the same show, Ms. Abbott says some pretty ignorant, borderline hateful things about what does and doesn't constitute a "real disability," which prompted a good deal of polite but sharp discussion among the hosts and guests.

And who could resist a show on disability with episode titles like:

“You walk funny"
Losing a leg, and being mugged
Who can use accessible loos?

I will be listening to Ouch more regularly.


Making Accessible Campaign Propaganda (ahem) Materials

BBC News - March 26, 2015

I am not aware of anyone in the United States making a high-profile, publicized attempt to produce political campaign materials specifically for voters with intellectual disabilities. It sounds like a worthwhile thing to do, and a pretty interesting task.

For one thing, there are so many types and shades of intellectual disability ... which I believe is what the BBC means when they say, "learning disability".

And how, exactly, does one "translate" a party platform so that intellectually disabled people can understand it? What does "simplifying" mean? Do you take out all the metaphors and colloquial phrases? Do you use shorter words and fewer compound sentences? How does "large print" help an intellectually disabled person with (most likely) normal eyesight?

Or, is it about more than grammar and font size? Are there social studies texbooks designed to teach adults with intellectual disabilities what "liberal", "conservative", and "libertarian" mean? Do you try to alert intellectually disabled voters to opaque, misleading slogans that all sound good, even when they contradict each other?

I would really like to learn more about this.



Jane Hawking’s Not-Bad Idea

Photo of a stack of newspapers with Breaking News! in large headline print
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, were tired of non disabled actors winning awards for playing disabled characters, especially when disabled actors cant 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, Stevens 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 its worth, I dont 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. Ive 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.


Disability In The UK, Viewed From The US

Guardian Staff, The Guardian - February 23, 2015

I’m not that interested in this article specifically. Iciting it only because it got me thinking about how disability issues and disability culture in the United Kingdom are different than they are in the United States. Theyre different, but in subtle ways I haven’t quite mapped out yet.

- It seems like ableist slurs and personal harassment get more mainstream press in the UK than they do in the US.

- It also seems sometimes like disabled people in the UK fight more for benefits than they do for civil rights. If so, its probably because they are forced to, and I worry that well soon have to do the same here in the US.

- I have also noticed that there is a lot less discussion in the UK over terminology. It seems like either they settled all those questions years ago, or else they just do care about it as much. Everyone seems to use “disabled” and “disability” and leave it at that.

I guess this is a comment thread. Id like to know, from both British people and American observers, what’s different about disability in the UK?

Stella Young Memorial

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