Thinking Today

I was thinking today about new way to explain how we want disability programs to change.

It’s not that we insist on nursing homes, group homes, sheltered workshops, and separate, self-contained classes all being banned … although some disability rights would like exactly that. The problem is that right now, in most states and localities, these types of facilities and programs are treated as default options when they should be last resorts.

If you need help with everyday self-care, you can go into a nursing home. Or, if you have a damned good reason, you might be able to get home care and supports instead so you can live in your own place like everyone else does.

If you have developmental disabilities and your parents can’t take care of you anymore, you can live in a group home. Or, if you have a damned good reason, you might be able to get on a waiting list for services that enable you to live in your own apartment.

If you need ongoing training and support to find and succeed in a job, you can work in a sheltered workshop, maybe for less than minimum wage, and certainly cut off from the rest of the community. Or, if you have a damned good reason you might get some services and supports that help you find and keep a job in a real workplace out in the community.

And if you’re a kid with significant disabilities, you may find yourself in a separate school or separate classroom just for kids with disabilities. Or, if your parents can give a damned good reason, your school district might agree to let you learn in a regular classroom along with other kids your own age who aren’t all disabled.

Instead of having to make an extra-strong, carefully laid out and heavily researched argument for why they should be allowed to live like everyone else, disabled people should have to have a damned good reason if they prefer instead to live and work in a more segregated, specialized, sheltered environment.

If you want to move into a nursing home, you should have to have a damned good reason why you can’t live at home with supports instead.

If you or your family would prefer a group home, you should have to have a damned good reason why you can’t live in your own place with supportive services.

If really want to work in a sheltered workshop, you should have a damned good reason why you can’t work in a regular job with job coaching and supports.

And if your parents want you to go to school in a “special” school, they should have a damned good reason why you can’t benefit from education in a regular school with non-disabled peers.

Maybe these older, more restrictive programs should still be options, but you should have to give a damned good reason to choose them. You shouldn’t have to prove that freedom and independent are right for you. You should have to prove if you think they aren’t.

Nothing Today Except ...

I've been working on a post on and off today, but I don't think I'm going to be ready with it until tomorrow. In the meantime, how about some music?

Weekly Reading List

ABLE program provides tax-free savings for disabled children
Carole Feldman, Washington Post - January 19, 2016

It has been quite awhile since we heard about the ABLE Act, and I'm glad to see it's finally being implemented. I like that Ms. Feldman consults tax professionals in her article, not just disability experts. And one of them mentioned how ABLE accounts are not counted as assets for the purposes of ongoing benefits eligibility ... which is one of the most valuable aspects of the program, yet rarely mentioned. I do wish there was a stronger pitch directly to disabled adults, instead of always describing this as a program for parents of disabled "children." Even though it's only for people whose disabilities began before age 26, if you meet that criteria you're still eligible if you live past 26 ... so it's not just for kids.

'My baby would always be a carrier of my disability'
Kathleen Hawkins, BBC - January 18, 2016

This article has a terribly misleading headline. It suggests the article will be a sad story about a disabled woman deciding not to have a child for fear of passing her disability on to her child. It's actually about a disabled woman who is aware of the genetics, but decided to have a child anyway, even if she had found her child would be disabled. It's also a very realistic and positive story that if it conveys any message at all, says that pregnancy, childbirth, and raising a child are entirely feasible for women with disabilities. Even the photo on the article clashes with the tone of the headline. How strange.

I Can't, In Fact, "Do Anything I Set My Mind To" (And That's OK)
The Squeaky Wheelchair - January 21, 2016

This is a fantastic exploration of the nuances of the possible where disabled people are concerned. It's a much more complex and balanced argument than I expected based on the title. And the accompanying photo is perfect!

Voices Out of Turn and Without Permission
Dave Hingsburger, Rolling Around In My Head - January 22, 2016

I share Mr. Hingsburger's view that it's okay for disabled people to comment on disability-related images and expressions that are publicly offered, even when they are also expressions of private, personal feeling. I especially like how he notes that ideas about disability are inherently political, never just personal. However, I do think that some degree of moderation is in order when the thing we are talking about involves the most intense and fundamentally private matters, like family, children, love, and loss. I also think the politics aspect needs more exploration, because while many of us equate "political" with "meaningful" and "important,"  many pep[;e associate "political" with "corrupt," "arrogant" and "self-serving." I think they're wrong, but it's a very common reaction to the whole notion of "politics" and "agendas." It's one of the main reasons it's so hard to talk meaningfully about disability without rubbing people the wrong way. Of course, what is private and what is public? Is there a gray area between the two? Might that gray area be similar to what some social media people and activists call "safe spaces" ... public, but with an understanding that some responses are, in that particular context, "not okay?" I really don't know. Its an interesting and maybe important thing for the disability community in particular to think about.

Born This Way: A Closer Look At The New Hit TV Reality Show
Vicki Vila, Two Thirds Of The Planet - January 23, 2016

I am really impressed with the thoroughness of this review. Ms. Vila gives due consideration to many different takes on the show and its meaning, and takes the time to reach out and talk with some of the key people associated with the show, and with other reviewers. I found it most interesting to read how the viewers with Down Syndrome she spoke to reacted to the show. I feel like I need to figure out a way to keep including more disabled voices in the Disability.TV Podcast ... more disabled voices other than mine, that is.

Weekly Wrap-Up

This week’s posts at Disability Thinking:

Sunday, January 17
Weekly Wrap-Up

Monday, January 18
Weekly Reading List

Tuesday, January 19
The Shelf Life Of Disability Jokes

Wednesday, January 20
More Election Coverage

Thursday, January 21
Throwback Thursday

Friday, January 22
Disputing “Ableism”
Disability.TV Episode 29 - President Bartlett’s China Trip

Saturday, January 23
The Return Of The Disability.TV Podcast

The Return of the Disability.TV Podcast

The first new Disability.TV Podcast episode in quite awhile is now available! Click the link to get there, or listen right where you are using the light brown widget:

Ep. 29 - President Bartlett’s China Trip

If you’re new to the podcast and want to check out previous episodes, follow the selected archived links below:

Ep. 2 - Ironside (Original)

Ep. 7 - Friday Night Lights
With guest Maddy Ruvolo

Ep 8 & 10 - Game Of Thrones Part 1, Game of Thrones Part 2
With guest Alice Wong

Ep. 12 - Glee
With guest Cheryl Green

Ep. 14 - Ironside (2013)
With guest Kamilah Proctor

Ep. 16 - Big Bang Theory
With guest Sarah Levis

Ep. 19 - American Horror Story: Freak Show
With guest Jane Hash

Ep. 21 - Reality TV
With guest Emily Ladau

Ep. 23 - Downton Abbey
With guests Kelly Anniken and Tom Schneider of the Up Yours, Downstairs Podcast

Ep. 24 - Red Band Society
With guest AmputeeOT

Ep. 25 - Girls: Jessa & Beedie

The easiest way to keep up with new podcast episodes is to subscribe in iTunes, Stitcher, or Podbean. Click the links to get that going. It's entirely free. If you like the podcast, I would really appreciate your positive star ratings and comments with whichever podcasting service you use.

Is there a TV episode or character related to disability you would like me to discuss? Let me know! Send me an email at: apulrang@icloud.com, or Tweet at me: @AndrewPulrang.

Disputing "Ableism"

When people say “Ableism isn’t a thing,” usually typed in the comments to something posted on Facebook by a disabled person, I often wonder what the commenter actually means. Do they actually not know what ableism is supposed to be? Do they honestly misunderstand the term? Or, are they just trolling and baiting “social justice warriors?” It seems like there are several possibilities:

• They have never heard the word before, and literally have no idea what it means.
• They don't believe that ableism is as significant as disabled people say it is. They might admit that disabled people hear the occasional prejudiced remark, or experience overt discrimination, but they don't perceive disabled people as widely hurt or disadvantaged enough by disability prejudice to justify a specific word for it. 
• They think that most ableism is benign, unintentional, or caused by lack of "awareness," suggesting that it is more of a social etiquette issue than a political, social justice, or identity issue.
• They have heard the word “ableism” before, but it sounds "made up" to them, a term coined for political purposes. People like this usually feel that anything "political" is bad and dishonest.
• They are skeptical and impatient with any talk of prejudice or discrimination, of any kind. They have contempt for the very idea of ableism the same as they do for racism, homophobia, sexism, etc. They also sometimes confuse being against the idea of ableism with being opposed to ableism itself.

A couple of years ago, I did a series of posts on ableism. I think I would define and categorize it differently now, but what I wrote then still mostly works.

[3 Kinds Of Ableism]
[3 Ableisms: Part 1 - Well-Meaning Ableism]
[3 Ableisms: Part 2 - Systemic Ableism]
[3 Ableisims: Part 3 - Asshole Ableism]

Throwback Thursday

Two years ago in Disability Thinking: Book Club: “The Man He Became”

It may be time for me to re-read “The Man He Became.” The book draws a much more nuanced picture of Franklin D. Roosevelt as a disabled man than anything previously published. In modern terms, he neatly straddled the Medical Model and Social Model of disability. He never gave up on finding a cure for Polio, and I don’t think he would have related to anything like today’s “disability pride” or “disability culture.” Yet in his own life, he clearly made a conscious decision to cut short his personal quest for recovery in order to revive his political career. He carefully restricted how his disability was pictured and discussed in public. In person, he loved and trusted the advice and companionship of others with disabilities … people who otherwise had no connection at all with Roosevelt’s political experience or social privilege. He consulted the best medical experts he could find, but ultimately developed his own theories and treatments. His political resurrection relied on what we would now call “Inspiration Porn,” but he would never rely on such sympathy again. As a disabled man, FDR was of his time, and ahead of it, simultaneously.

“The Man He Became”, by James Tobin

• Amazon.com
• Audible.com

More Election Coverage

My CDR Blog posts on the last two Presidential debates:

Blowing On Sparks: The Sixth Republican Presidential Debate

“Trying to spot and make something out of these small but significant references to disability feels a bit like blowing on a few tiny sparks to get a fire going in subzero weather.”

Shoot For The Moon, Or Play It Safe? – The Fourth Democratic Presidential Debate

“So, while neither the Democrats nor the Republicans seem to think it’s important to address or even mention disability issues in their debates, (Kasich’s startling mention of nursing homes and home care aside), maybe we as disabled voters should be helping our fellow voters without disabilities work through these fundamental questions … questions we as disabled people struggle with every day.”

The Shelf Life of Disability Jokes

I am a pretty big fan of Jerry Seinfeld’s TV work. There’s Seinfeld, obviously, which left a hell of a lot of graffiti in permanent marker on the interior surfaces of my mind, including at least one really great disabled character, Danny Woburn's Mickey Abbott. And more recently I have mostly enjoyed Comedians In Cars Getting Coffee. On each episode of the show, Jerry interviews a comedian while driving them around in some kind of amazingly cool car, and then getting coffee at a coffee shop.

The most recent episode features Kathleen Madigan and her comedy partner Chuck Martin. I’m writing about it here because the show included two disability moments … an impromptu riff by Jerry with an assist from Chuck, and a joke from Kathleen.

First, while driving, Jerry spotted a banner reading “Celebrate Disabilities.” He read it back in his trademark “Can you believe this?” voice, and he and Chuck riffed on how obviously weird it was to cheer about being disabled.

Later on, Kathleen talked about a comedian she knows with Cerebral Palsy who also at one time had a drinking problem. Her line to him was that you can’t have both … you have to pick one! Because, you know, two serious problems that affect your communication are unsustainable. She threw in a mock “CP voice” just to illustrate, just to help the joke along.

I enjoy comedy. I may even qualify as a comedy nerd. So I am very reluctant to condemn disability-themed comedy bits on impulse. But these were not very impressive disability jokes, for one very specific reason.

It’s not because the jokes were hurtful or offensive, though it shouldn't be a surprise if some disabled people are offended, certainly by Madigan mimicking how people with CP talk. The real problem is that both jokes rely on faulty premises and too much feigned ignorance. I believe that Jerry Seinfeld must understand on some level that a cheery-looking sign reading, “Celebrate Disabilities” isn’t nonsense ... maybe a bit too cheerful for my taste, but not a contradiction. He has to be at least a little familiar with the idea of disabled people having some pride, and attempting to get other people to view them more positively. Jerry's joke implied that the sign makes no sense, but I don’t think the’s that ignorant … so the joke doesn’t ring true to me.

Similarly, I suspect that Madigan, (a veteran comedian, not a rookie), knows perfectly well that plenty of disabled people have a drinking problem. She may even be dimly aware that disabled people are statistically more likely than the average person to have drinking problems, for a variety of reasons. Now, I do think there’s a kernel of truth in her joke … that having two significant conditions at once is probably harder than having just one. There's a legitimate bit of dark irony there. But then her joke also depends on the idea that while her friend’s CP isn’t optional, alcoholism is. I mean, alcoholism is more readily controlled than Cerebral Palsy, but not by as much as Madigan’s joke would imply. And again, she thinks her story will be funny because of the surprise factor … a guy with CP and he’s an alcoholic?! But how many actual audiences today would think this surprising?

This happens a lot to “observational” comedians. They base their jokes on shared confusion, an assumed common bewilderment over seemingly inexplicable contradictions in everyday life. But as time goes on, we learn stuff. Many things that were confusing in the ‘80s and '90s are pretty familiar to most people now. That’s one reason why disability jokes don’t work the way they used to. It’s not just because they are offensive. It’s also because most audiences now are more knowledgeable about disability and actual disabled people, so they're not as perplexed and bewildered as the comedian is, or pretends to be. If the comedian asks, "What's up with that?!" and 80% of the audience can give a logical answer, then it's not that funny.

By the way, was Madigan talking about Josh Blue? And if Josh Blue told a CP + alcoholism joke, would it be funnier? How about Jerry taking Josh Blue out for coffee in a cool car? I would watch the hell out of that.

Weekly Reading List

The best disability articles I read last week:

Disability Wasn’t Mentioned in the State of the Union. Should We Care?
Ari Ne’eman, Sometimes a Lion - January 16, 2016

Ari Ne’eman argues persuasively that the Obama Administration has an impressive record on disability policy that for some reason President Obama doesn’t speak about … and that it is, in fact, vital for the President to speak about disabled people and disability policy.

Parents of Children with Disabilities: Are We Speaking With or For a Community?
Melissa Stolz, Two Thirds Of The Planet - January 12, 2016

A little more about the “The Mighty.” Here, a parent explores the different shades of meaning and gradation of roles that parents have in advocating for and with their children with disabilities.

The Mighty Question: Who Should Speak for the Disability Community?
Emily Ladau, Words I Wheel By - January 13, 2016

Along similar lines, Emily Ladau discusses the difficult balances between the needs and priorities of disabled people, and of parents of disabled kids.

Don’t Like. Don’t Share. Don’t Comment. Don’t Pray.
Deek, Grounded Parents - January 12, 2016

If you think “The Mighty” is bad, there’s far worse out there, including a very specific kind of social media meme that’s nakedly crude and exploitative, where “Inspiration Porn” is more subtle.

When Is a Feeling Wrong?
Dave Hingsburger, Rolling Around In My Head - January 12, 2016

Dave Hingsburger describes a very specific incident that’s very typical of a kind of incident disabled people experience all the time. They make us mad, then make us feel bad for feeling mad. And may I add, THAT makes us feel even madder.