Telethon Thoughts

The Disability Visibility Project blog ran a great series over the last few days about Jerry Lewis’ Muscular Dystrophy Telethon, with articles by disability activists reflecting on their strong and sometimes personal feelings about the telethon and using pity to raise money for disability causes. Each one is well worth reading and exploring further:

DISABILITY HISTORY: NEW YORK TIMES OPINION PIECE ON MDA TELETHON BY EVAN KEMP JR. (9/3/81)

Disability Visibility Project - August 29, 2014

PEOPLE WE LOVE: INGRID TISCHER, BERKELEY, CA

Disability Visibility Project - August 30, 2014

PEOPLE WE LOVE: BEN MATTLIN, LOS ANGELES, CA

Disability Visibility Project - August 31, 2014

PEOPLE WE LOVE: LAURA HERSHEY, 1962-2010

Disability Visibility Project - September 1, 2014

Protests against the MDA Telethon started right around the time I woke up to the disability rights movement, and it was one of the first demonstrations I remember of the fact that disability rights is not an easy, simple road. It involves a lot of “biting the hand that feeds you”, and many aspects of disability rights thinking do not come naturally. It’s one thing to observe that disabled people deserve equal rights … that’s something everyone should know instinctively. Unless you have a disability yourself, you have to think actively and practice deliberate empathy to understand how a well-intended fundraiser can be not only distasteful, but even harmful. On the other hand, once you do see it, especially if you have a disability, it’s impossible thereafter not to see it.

I had a conversation this weekend about the Ice Bucket Challenge, and afterwards I realized another thing that bothers me about so many disability fundraising efforts.

I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities. It’s strange, when you think about it. “Medical Research” is so abstract, and outcomes so fleeting, while building ramps and buying people speech synthesizers is entirely concrete, with immediate payoff. You would think all us practical-minded Americans would rather give to pay for things people can use, than to provide open-ended funding for fuzzy dreams. Yet, it’s exactly the opposite.

As one of my favorite bloggers often says, “People Is Weird”.

(P.S.: ... says the guy with a PayPal donation button on his blog!)

This

"Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign. At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out.” — Know Me Where It Hurts: Sex, Kink, and Cerebral Palsy

It's only part of a longer, quite excellent piece by a woman with Cerebral Palsy, but I related to this bit so strongly that I just had to take note of it.

This.

Very much this.

Via the Disability Fashion Project Tumblr blog.

Buy It: "The West Wing"

"The West Wing” series is about so many things that its extended depictions of disability take their natural place as just one of many interlocking story lines. President Josiah Bartlett’s “hidden” Multiple Sclerosis echoes the real President Roosevelt’s imperfectly obscured Polio. Although the later years of the show aren’t as good as the first few, the disability depiction improves, showing the President’s progressing disability both as a legitimate personal crisis, and a manageable one that only occasionally interferes with his conduct of “the job”.

It’s such a bonus to that we get another disability depiction, in the recurring character Joey Lucas, the political pollster who is deaf, played by Marlee Matlin. Her introductory scene, in which a drunk Josh Lyman struggles to understand that she is deaf, and the guy with her is her Sign Language Interpreter, is one of the funniest scenes in the entire series.

Two Views Of Autism

Autism rates aren't actually increasing

Julia Belluz, Vox.com - August 28, 2014

"What's more, autism spectrum disorders — which causes social impairment and stifles people's ability to communicate — still represents significant suffering globally. 'The burden of disease caused by the disorders is not only high in children but continues throughout the lifespan into adulthood,' says Baxter. In 2010, autism spectrum disorders caused 7.7 million person-years of healthy life lost, around the world."

Two of Vox.com's strengths are explaining things, and dampening hysteria with actual information. I am glad to see them take on the supposed explosive growth of autism. I would love even more for Vox.com do a followup addressing the radically different conceptions of autism that most autistic people, and those of us who read and write disability blogs know about, but most people don’t.

“Suffering” and “healthy life lost” provide an unusually clear picture of the divide between two fundamentally different ways of understanding autism.

The traditional, medical view is that autistic people "suffer from” autism. And because autism apparently means autistic people have no personalities or points of view of their own, families suffer even more, from the stress and anguish of having kids with autism. If they really thought about it, most people would probably say that “autistic” and “healthy” are incompatible concepts, and that autism is one of the most dread of diseases, the very opposite of, "I don't care if it's a boy or a girl. I just want it to be healthy!"

The Neurodiversity or Autism Acceptance views of autism do not deny that autism exists or that it is difficult. Nor do they deny that there is suffering. The difference is where the suffering is thought to come from. In this alternative view, autism is not always inherently painful or debilitating. Rather, it is non-autistic people's lack of understanding of autism and, their pathologizing approaches to it, that cause autistic people to suffer most.

I wonder if and when these different paradigms of autism … and of other disabilities, too … will become more widely known. It seems like an important thing to at least be aware of.

Disabled TV Character Face-Off - Survey

Following up on yesterday’s post, here’s your chance to help start the Disabled Character Face-Off. The top 16 of these 32 characters will compete in a “bracket” style elimination tournament, to determine the best disabled TV character of all time!

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

Weekly Wrap-Up

Characters, questions, and ice buckets.

Sunday, August 24, 2014

• Buy It: "The Other Sister"

Monday, August 25, 2014

• Writing Process Blog Hop

Tuesday, August 26, 2014

• The Ice Bucket Challenge ... What's Next?
• When Headlines Get It Wrong
• Photo Of The Day

Wednesday, August 27, 2014

• When "Despite" Is Really "Because"
• More Important, Not Less

Thursday, August 28, 2014

• Question For Discussion

Friday, August 29, 2014

• Disability.TV Podcast - Supplemental

Saturday, August 30, 2014

• Disabled TV Character Face-Off
• Video Of The Day

Video Of The Day

So many amputees make it look easy, so it’s good to be reminded that there are still very real, practical impairments involved.

Disabled TV Character Face-Off

As I promised in yesterday's Disability.TV podcast, here is an initial list of competitors for the esteemed title of "Best Disabled TV Character Of All Time". It's just a draft list though. Before creating the definitive bracket and getting on with the individual face-offs, I'd like to get a few ideas from you. Who are your favorite TV characters with disabilities? Who is missing from this list? Are there any on the list that don't belong on it?

I don't have any firm rules for what kinds of characters should be in this competition. However, I would tentatively suggest that we not count one-time guest characters, TV movies characters, or truly background characters without dialog or involvement in a show's ongoing plot. Minor characters are fine, as are recurring characters who appear on a TV show more than one or two times. The character must have either a known disability, or one that is obvious to us the viewers, even if it is not acknowledged by the other characters on the show.

So here is the draft list, in alphabetical order:

Addie Langdon - American Horror Story

Artie Abrams - Glee

Becky Jackson - Glee

Bran Stark - Game Of Thrones

Chief Robert Ironside - Ironside

Claudius - I, Claudius

Corky Sherwood - Life Goes On

Daniel "Lifeguard" Borroughs - Wiseguy

Derek - Derek

Detective Robert Ironside - Ironside

Dr. Kerry Weaver - ER

Dr. Gregory House - House, M.D.

Geordi LaForge - Star Trek: The Next Generation

Hodor - Game Of Thrones

Jaime Lannister - Game Of Thrones

Jake Malinak - Becker

Jason Street - Friday Night Lights

Jewel - Deadwood

Jimmy - South Park

John Bates - Downton Abbey

Joey Lucas - The West Wing

Kevin Girardi - Joan Of Arcadia

Maester Aemon - Game Of Thrones

Max Braverman - Parenthood

Mel Fisher - Growing Up Fisher

Mike Henry - The Michael J. Fox Show

President Josiah Bartlett - The West Wing

Sheldon Cooper - The Big Bang Theory

Sherlock Holmes - Sherlock

Timmy - South Park

Tyrion Lannister - Game Of Thrones

Walter "Flynn" White, Jr. - Breaking Bad

Send your changes and additions to my email address: apulrang@icloud.com.

Disability.TV Podcast - Supplemental

In this brief podcast, I talk about some adjustments to my approach, ask listeners for feedback, and preview what's to come in upcoming episodes.

Podcast Schedule

September 5

Ironside (New)

September 12

Friday Night Lights

Guest Co-Host Maddy Ruvolo

September 19

Game Of Thrones - Tyrion Lannister

Guest Co-Host Alice Wong

September 26

Mini-Cast

October 3

Game Of Thrones - Jaimie Lannister, Bran Stark, and Others

Guest Co-Host Alice Wong

October 10

Mini-Cast

October 17

Glee

Guest Co-Host Cheryl Green

Question For Discussion

I have a question inspired by a Twitter exchange I just saw involving @ollibean, @emily_ladau, @autselfadvocacy, and @AndyAUCD, about how a family can find help for a college student with disabilities who needs personal care assistance while at college.

Question:

Why is it so common for disabled people and their families to wish for programs and support services that already, basically, exist?

Are the programs too opaque and difficult to find? Are they under-funded? Are disabled people and their families not looking in the right places or asking the right questions? Do existing supports target the wrong problems and the wrong populations? Is it just poor PR and marketing skills? Are peoples’ expectations too high, so they don’t go for services that aren’t 100% perfect?

What do you think? Leave your thoughts in Comments.

More Important, Not Less

Don’t Let Medicare Take Away Severely Disabled People’s Ability to Communicate!

Center for Medicare Advocacy

Medicare plans to stop approving purchase of speech devices … electronic machines that generate speech for people who can’t speak due to a disability … for people in health care facilities like nursing homes. Picture Stephen Hawking with his voice synthesizer.

The rationale, it seems, is that such facilities provide total care, so it’s less important for the patient to be able to communicate.

The same rationale use to be used … may still for all I know … to refuse purchase of electric wheelchairs and mobility scooters for people in nursing homes and other institutions. Someone in such a facility doesn’t need to be mobile in an institutional setting, because the institution does everything for them.

In both cases, this is a twisted rationale only a penny-pinching bureaucrat could come up with. I’m not knocking penny-pinching bureaucrats. It’s not horrible for someone to ASK whether these devices are still necessary for people in medical facilities. The problem is that other people with some knowledge of health care and disability (including disability rights) should answer that yes, they are necessary. In fact, they may be more necessary since even the “best” institutions tend to curtail patient mobility and healthy activity, and communication is the patient’s best protection from neglect, abuse, or medical error.

Let me say it again … it’s fine to question what some might see as “sacred cows”. But the accountants need to sit down and shut up when the items they want to skimp on are found to be, in fact, vital.

Click the link above to write to your Members of Congress.

When "Despite" Is Really "Because"

Why do police keep seeing a person’s disability as a provocation?

Harold Braswell, Washington Post - August 25, 2014

This is a good article on a timely and important topic. I would only add one thing.

I can't prove it, but I suspect that many police and a great many ordinary citizens think that mental illness is actually a justification for deadly force, not a reason to avoid it. It might not always be a conscious belief, but I think a lot of people still associate mental illness (a.k.a. "crazy") with unpredictability and violence. We say, "He shot the man, even though he was mentally ill", while on some level, it's really, "He shot the man because he was mentally ill, and therefore scary and threatening."

Unless this powerful prejudice is directly confronted and refuted with ironclad information and alternative strategies, this kind of thing is going to continue to happen to mentally ill people. I have somewhat higher hopes for change in how police deal with intellectually disabled people, like Ethan Saylor.

There's plenty of stigma to go round, but I think mentally ill people get the worst of it.

Photo Of The Day

Students with disabilities visiting the Metropolitan Museum of Art in New York City, 1922.

From the Metropoitan Museum of Art, via the Disability Visibility Project.