Weekly Wrap-Up
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Monday, March 9, 2015
Tuesday, March 10, 2015
Wednesday, March 11, 2015
Thursday, March 12, 2015
Friday, March 13, 2015
Saturday, March 14, 2015
Disability Or Disease?
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This morning I was listening to a “Sawbones” podcast episode on Malaria. Co-host Justin mentioned people who “suffer from Malaria,” and two things instantly went through my mind.
First, I thought, “Don’t say ‘suffer’!” Then I thought, “No, wait, Malaria is a disease, an illness, not a disability. ‘Suffer’ is the right word."
The difference between disease and disability one way of understanding the different ways people approach disability. People who subscribe more to the Medical Model … who focus on treatment, rehabilitation, and finding a cure … think of disability much as we think of Cancer, Leukemia, or Malaria. Most disabilities aren't like that, though. They are social identities, imposed from the outside, and they are more or less permanent conditions that are a part of us.
There are gray area conditions that are a little bit disability, and a little bit disease. Multiple Sclerosis, ALS, and some kinds of Muscular Dystrophy are progressive and can be life-threatening. But they’re not infectious, and on a day to day basis act more like a broken hip than Influenza. See also: Alzheimer's Disease and Down Syndrome.
This helps explain why so many disabled people talk about “fighting,” “beating,” and “overcoming" their disabilities. If you view it as an invading force, it makes sense. And in general, people are more familiar with illness than with disability, so the language and mindset are right there for easy access.
The difference between disease and disability one way of understanding the different ways people approach disability. People who subscribe more to the Medical Model … who focus on treatment, rehabilitation, and finding a cure … think of disability much as we think of Cancer, Leukemia, or Malaria. Most disabilities aren't like that, though. They are social identities, imposed from the outside, and they are more or less permanent conditions that are a part of us.
There are gray area conditions that are a little bit disability, and a little bit disease. Multiple Sclerosis, ALS, and some kinds of Muscular Dystrophy are progressive and can be life-threatening. But they’re not infectious, and on a day to day basis act more like a broken hip than Influenza. See also: Alzheimer's Disease and Down Syndrome.
This helps explain why so many disabled people talk about “fighting,” “beating,” and “overcoming" their disabilities. If you view it as an invading force, it makes sense. And in general, people are more familiar with illness than with disability, so the language and mindset are right there for easy access.
"The Daily Dot" Article
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Andrew Pulrang, The Daily Dot - March 13, 2015
This is the first of what I hope will be more articles on disability published at The Daily Dot. Thanks to Alice Wong (@SFdirewolf) for putting me in touch with them, and huge thanks to S. E. Smith (@sesmithwrites) for patient editing and showing me the ropes at The Daily Dot.
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Housekeeping
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I’m not working today. The weather is decent. It’s not that cold. My winter bronchitis is 98% done. It’s time I spent a day outside my apartment, enjoying some fresh, unheated air. So, I’m going to post a few housekeeping notes and and leave it at that:
- After several weeks posting Disability Blogger Link-Ups every Friday, I’ve decided to switch to every other Friday. That should allow enough time for people to collect more of their favorite disability-related posts and articles. So, the next Link-Up will be next Friday, March 20.
- I've set up a date and time to talk with Emily Ladau about disability on “reality TV shows”, for the Disability.TV Podcast. I’m also working on getting co-hosts for episodes on “Downton Abbey” and “The Red Band Society.” If you haven’t done so yet, have a listen to the latest Disability.TV episode, where I try to work out a star-rating system for disability on television.
- It’s been awhile since I posted anything biographical, but I’ve been prompted by a couple of great “letters to my younger self” pieces to write one myself. So, I’m working on that, too.
Enjoy the day!
Throwback Thursday
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A year ago in Disability thinking … Winter Paralympics - Thursday, March 13.
That was just last year? I'm not sure I can wait another three years to see Wheelchair Curling again.
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Jane Hawking’s Not-Bad Idea
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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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What's An Institution?
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What kinds of living and working situations for disabled people count as “institutional” and what counts as “inclusive” or “community-based?” What makes one approach “institutional” and another not? Which produces the best results for disabled people? Why were disabled people institutionalized so much in the past?
Since it seems like people are still defending institutions, even talking about having more of them, I think it's important to be direct about the issue. Unfortunately, it’s hard to find clear, simple talk about it.
That’s why these live Tweets caught my eye. They are from a presentation by Ari Ne'man. President of the Autistic Self Advocacy Network, given at a conference in San Francisco, Developmental Disabilities: An Update for Health Professionals. He makes some great points:
Disability.TV Ep. 20 - Mini-Cast
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Show Notes
#FilmDis … Twitter hashtag, hosted Saturday evenings at 9:00 PM Eastern, by @dominickevans.
BBC Ouch! Disability Talk Show: Oscars, acting, and singing on the tube - February 4, 2015 … Panelists discuss non-disabled actors dominating disabled roles in movies and TV.
TVTropes.com … Search “disability” to find dozens of disability “tropes” or clichés.
Hear More and Subscribe:
If you are so inclined, please leave an iTunes or Stitcher review. Positive reviews help more people discover the Disability.TV Podcast.
Comment:
Video Of The Day
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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.
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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Weekly Wrap-Up
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Sunday, March 1
Monday, March 2, 2015
Tuesday, March 3, 2015
Wednesday, March 4, 2015
Thursday, March 5, 2015
Friday, March 6, 2015
Saturday, March 7, 2015