March 1 Vigils

ASAN Announces March 1, 2014 Vigils

"Saturday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide--disabled people murdered by their family members or caregivers."

I think this is really important. If it works and people hear about it who don’t know about or think about these things, it will shock them, in a good way.

I’m the sort of person who wants to understand why people do terrible things like school shootings and murder-suicides. Condemning “evil” people isn’t something I can relate to most of the time. But that doesn’t mean I have sympathy for people who do horrible things, even if I can understand bits ad pieces of what brought them there. I think that people who think about or carry out murdering disabled spouses or children are typically victims of a combination of ingrained prejudice and institutional failures to support people who need support.

That said, when news stories telegraph the idea that these crimes are somehow more “understandable” that other murders, and then fail to question why people become so desperate, they leave the impression that it’s the disabilities that are intolerable, not the lack of support.

Plus, I don’t think we can discount the fact that at least some of the people who do these things are, for all intents and purposes, “evil” … angry, above all, that their lives have been “ruined” by “defective” relatives.

P.S.: I am really admiring the Autistic Self Advocacy Network these days. Along with ADAPT and Not Dead Yet, they are becoming a really effective team addressing the ableism in society that really matters most.

Photo Of The Day

From the mitos Tumblr blog, via Independent And Visible.

Light Blogging Notice / Keeping It Simple

I’m working on another grant application for my local Independent Living Center, so my posting may be light this week. For today, I just want to share a priceless little post by one of my favorite Tumblr bloggers, wheeliewifee. She’s responding to someone who asked about who should or shouldn’t use accessible bathroom stalls:

"The accessible bathroom question has a very simple answer and I think that’s why I get so impatient with receiving it over and over: If you need it, use it. If you don’t need it, stay out.

I’m not a doctor. I have no idea whether a person [is] capable of shitting in a regular stall. So people need to have a conscience, be a grown up, and figure it out for themselves!”

Sometimes it’s a relief when someone just cuts to the chase. I mean, a lot of these disability issues aren’t that complicated folks, and frankly, some of us who have disabilities are the ones that make them more complicated than they need to be.

Weekly Wrap-Up

Sunday, January 26, 2013

• “I’m Anemic Royalty"
• “Much Loved” Teddy

Monday, January 27, 2013

• Beige Flags
• An Opportunity In “Project X”?
• Wisdom Of The Day
• Live Tweeting the State Of The Union

Tuesday, January 28, 2013

• The State Of The Union & People with Disabilities
• Jillian Mercado On "Today"

Wednesday, January 29, 2014

• #SOTU4PWDS
• Journalistic Disability Clichés

Thursday, January 30, 2014

• Wonkblog Interview On Work And Disability
• Another "Today Show" Piece Has My Mind Spinning
• Photo Of The Day

Friday, January 31, 2014

• Book Club Reminder
• Our Religion And Our Science ...
• No Raise For You!
• Music For A Friday Evening

Saturday, February 1, 2014

• Book Club Postponed
• What’s In The Ableist Agenda?
• Recommended: More On Ed Roberts

Recommended: More On Ed Roberts

Ed Roberts: The Civil Rights Leader That Time Forgot

That Crazy Crippled Chick - January 25, 2014

I’m not going to add much of anything to this link. I just now read it, and want to recommend it to my readers. Its a great remembrance of Ed Roberts.

What's In The Ableist Agenda?

I decided, for dark amusement, to try and channel what ableist people actually think about disabled people and the disability community. More specifically, I tried to figure out what’s the “Ableist Agenda”, if there is one. Here’s some things I came up with. Feel free to add more in the comments. Remember please, these aren't my beliefs, it's me trying to say what I think ablest believe:

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There’s a whole bunch of people nowadays saying they are “disabled”, who really aren’t. They’re either lazy and knowingly trying to get money for nothing and special privileges, or they’re messed up in the head and have convinced themselves they’re disabled because somehow it makes them feel better or feel special or something.

All sorts of weaknesses and moral failings are now considered disabilities. When I was in school, kids who misbehaved were punished, not given an SSI check and put in Special Ed. It’s disgusting!

The other thing disabled people do these days is try to convince everyone that there’s nothing actually wrong with them … that their defects are just “differences”, like skin color. Some of them don’t even really want to get better, which is crazy, right?

They say they want to ban all institutions, but look what happened when we let all the crazy people out of the insane asylums. We got all these homeless people pushing people in front of trains! Even if they don’t do anything bad, what are these poor retarded people going to do, move back in with their elderly parents? End up on the street, taken advantage of?

I know some really sweet, admirable disabled people. But lots of the disabled people I meet are crabby, bitter, and demanding. Nothing’s ever good enough for them, and if everything isn’t perfect, they’re calling a lawyer.

Disabled people have too many special perks and privileges. Maybe at one time it wasn’t such a big deal, but now things have gone too far and they’re crowding out everyone else and getting in everyone’s way. And still nothing’s good enough for them!

It's a hard thing to say, but for some of these really badly disabled people, it's just not worth all the money we spend on them. And it would be better for them, even, if they just died naturally. I mean, who wants to live like that anyway?

I’m all for more accessibility, and I’m sure some good disabled people are discriminated against for jobs, but laws like the ADA are just open invitation for ambulance chasers. It’s a feel-good law that doesn’t do any good, just causes a lot of mischief.

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What’s interesting is that these are more a bunch of complaints than a policy agenda. One of the side effects of being ableist is that people who are ableist usually don’t know anything about how disability policy works, so they don’t really have a coherent list of actual things they would change. Maybe that’s a blessing.

Of course, there’s a pretty coherent agenda against poor people, a group we overlap with quite a lot. Maybe that’s a separate discussion.

Mostly, ableism seems like an offshoot of the “You kids get offa my lawn!” / “This country’s going down the tubes!” strain of conservative thinking. To misapply Lionel Trilling, ableism today seems to be mostly a set of “irritable mental gestures that seek to resemble ideas”.

Book Club Postponed

Part Two of “The Man He Became” is so packed that I’m having a hard time boiling it down to its essentials, so I’m putting off the next Book Club discussion to next Saturday, February 8. For now, I’ll leave you with a quote from the book, from some un-named Democratic delegate in 1924, after Roosevelt delivers a rousing nomination speech for Al Smith, which did Roosevelt more good than Smith:

“Hell, it’s not legs we want in the White House, it’s brains!”

I think this charismatic young cripple might make a good President someday ...

Music For A Friday Evening

Earlier, I mentioned reading something today that nearly “broke my brain”. For whatever reason, this song nearly broke my brain when I first heard it back back around 1989, and this is my favorite performance of it.

No Raise For You!

Workers With Disabilities Left Out Of Obama Wage Plan

Michelle Diament, Disability Scoop - January 31, 2014

To be honest, I held off posting about this for a few days, even though I think its hugely important, because I didn’t like any of the articles or blog posts about it. They tended to leave the impression that “all” disabled workers would miss out on the Minimum Wage raise for federal contract workers. It only applies to workers under the 14(c) exception to the federal Minimum Wage law. Not that it isn’t a terrible enough as it is, but we should remember that laypeople might actually be listening, and most of them don’t know anything about how disability issues like this work.

Anyhow, Disability Scoop has done a good job of summarizing this thing, and it’s update indicates that some heavy hitters are getting on the case. Frankly, I think that for the moment, this should be Issue #1 for the disability community … or those portions of it who are willing to scrap this stinking relic of a policy.

As a side note, Vice President Biden will apparently also be leading a review of all employment training programs, which I hope will include vocational rehabilitation. If it does, then he will probably end up dealing again with 14(c), which even traditional voc. rehab. is increasingly abandoning. I believe that in my home state of New York, voc. rehab. will still place some people in sheltered workshops, but won't consider such placements "successful closures", which is actually a pretty effective way to kill off the practice and combat the philosophy behind it.

Our Religion And Our Science ...

"My religion can never be science. This is the difference between navigating the world and explaining it.” -- Ta-Nehisi Coates, The Atlantic - January 31, 2014

It’s risky to take insightful words meant for one discussion and apply them to another. I’m going to do that now, though, because when I read the lines above in an article by Ta-Nehisi Coates about different ways that African-Americans process their history, culture, and politics, it nearly broke my brain because it seemed completely applicable to a basic duality for the disability community.

What’s our duality?

On the one hand, there are things we as people with disabilities can do, and ways that we can behave, that can help us navigate this world successfully. We can educate ourselves, master our disabilities as best we can, plan the accommodations we need so its easier on everyone else, dress well, and practice ignoring the stares and always smiling. These things will help, and not doing them usually makes life harder for us.

On the other hand, the problems we face aren’t primarily because of things we fail to do or how we act. “Putting our best foot forward” doesn't remove the fundamental barriers that confront us. They exist independently of us. The world isn’t designed for people like us, and it’s getting better only very slowly. Being polite doesn’t cause ramps to materialize. Education does’t guarantee a job or even a decent shot at one. Smiling in the face of prejudice is often impotent, or worse, complicit. People have misguided and even hostile impressions of disabled people that they’ve learned on their own, whether they’ve met lots of disabled people or not. The roots of ableism are very, very old, lodged still deep in the lizard brain.

Which is why the quote rocked me so hard. I believe two contradictory things with equal conviction:

1. Every disabled person has available to them tools and strategies for making their lives better, and we are individually responsible for locating and using those tools to the best of our ability. If we aren't sure what those tools are, or where to find them, there are a lot of us around who are willing to help each other. I believe this to be true.

and

2. The most significant barriers we face aren’t of our own making, and nothing that we do individually is going to shift them an inch. There is hope for change if we work together, but it won’t always be fun, it won’t be easy, and it will sometimes make people uncomfortable. But if we don’t engage and try, then the only successes we’ll see for disabled people will be the kind of anomalies and one-off lucky breaks that get featured on slow news days. And thank God for them! They remind us of what success can look like, and chip away at non-disabled peoples’ preconceptions. It’s just that there are hard realities and quantitative facts at play that individual moral fortitude alone isn't going to change. I believe this, too.

The first is about self-help, and you could say it’s our religion. It’s a faith that if we try to be the best people we can be, we will see some reward. Also like religion, we commit to it for it’s own sake, even when we can see that it makes little difference to objective reality. 

The second is the objective reality that resists attitude, pluck, and even hard work, but can be analyzed, mapped out, and understood. And if understood, changed or at least shifted with smart, thoughtful collective action.

“My religion can never bee science. This is the difference between navigating the world and explaining it.”

It has never been clearer to me that we need both in the disability community, and that we need to evaluate each effort differently, by different criteria, because they have different, though complimentary goals. It's why Centers for Independent Living do both services and advocacy.

For what it’s worth, it feels good to be able to think about it this way.

Book Club Reminder

Tomorrow evening I will post the second part of my three-part “Book Club” on James Tobin’s new FDR biography, The Man He Became: How FDR Defied Polio to Win the Presidency. I’ll be discussing Part Two: “He’s Through”.

Part One: “Virus and Host” described how Franklin Roosevelt, a promising Democratic politician with Presidential aspirations, contracted Polio during a summer vacation in Maine, and how he, his family, friends, and political allies learned what the disease might mean for him personally and politically. Tobin suggests that if this was the start of what has been called a “Splendid Deception” to hide Roosevelt’s disability, then it was a very complex, ad hoc, and mutual deception. Nobody really knew how disabled he would be in the long run, FDR himself seemed both to know things were worse than people were saying, and determined to “fully recover”. Several doctors and therapists disagreed over what, exactly should be done. And FDR’s closest, most savvy political aide, Louis Howe, didn’t so much mastermind the hiding of Roosevelt’s disability, as he improvised at each step to put off a larger reckoning that might, or might not have to come. In short, in those first weeks and months after Polio attacked, everyone was just trying to muddle through.

In Part Two, we will see how Roosevelt and his team started coming to terms with the fact that some degree of disability was probably inevitable and possibly permanent. Roosevelt starts to take command of his own rehabilitation. Meanwhile, the ebb and flow of national politics create some key openings for Roosevelt, if he’s able to “walk” through them. He does, in a way, and we will see how.

I can’t say enough for this book. Despite being about one of the most famous figures of the Twentieth Century, it contains a huge amount of information and ideas that will be new to most readers. I find that it also resonates on many frequencies for people with disabilities today. No matter what preconceived feelings you might have about FDR going in, if you are disabled or have people in your family who have disabilities, you will find yourself feeling very personally connected with him as he deals with an almost complete derailment of all his life’s expectations. Even though we know how it turned out for him, there’s real suspense here.

If you want to catch up, I also recommend the audiobook, available from Audible.com.

Photo Of The Day

I’m not really into Cosplay, but this is really cool.

From the Just Rollin’ On Tumblr blog.

Another "Today Show" Piece Has My Mind Spinning

'Dead' man living: Disabled teen-turned-Internet star 'lives by inspiring others’

Scott Stump, NBC Today Show - January 28, 2014

I have so many mixed and contradictory feelings about this story about Nick Santonastasso, a 17 year old with a rare condition that includes having no legs and just one under-developed arm. The article is all over the map about Nick’s various activities, but the gist is that he’s a very outgoing guy who seems to have a personal mission or motivation to, in his words, “inspire” others. That’s where my mixed feelings begin.

As I’ve noted before, over-use of the word “inspire” or “inspirational” to describe disabled people is one of my “beige flags”. I find it annoying and I get so tired of it, but I can’t really say it’s offensive or wrong. Mostly I think it’s lazy shorthand for a sort of generic “positivity”, most often used by journalists who don’t know how to explain peoples’ feelings about disabled people who do neat stuff.

But here, it’s the disabled guy himself who uses the word most. He’s quoted using the word 6 times in the article, unironically and uncritically. It seems like its the word he chooses. For the record, other people … family, friends, coaches … are quoted using “inspiration” 3 times, and the article’s writer adds 3 more mentions. In total, the article contains 12 instances of some form of the word “inspirational”. I think that’s a lot. I think it suggests that the word is doing more than just filling a space. It’s standing for something meaningful to the people involved. I’m honestly not sure what that is, and notably, the article doesn't really explain what it means, either.

I’m also not sure what to think about Nick's whole zombie ambush routine. Is it brilliant and satirical for him to connect the very popular zombie theme with his particular kind of disability? Or, is he unwittingly putting on a freak show? Maybe it’s a little of both. We laugh because people are momentarily scared by his appearance, which Nick plays up for all its worth. Is it just funny in a “boo, I scared you!” way, or does it also remind us that people still have very primitive, caveman reactions to people who are “deformed”?

I wonder if Nick has thought about these things. He’s only 17. Maybe these are thoughts and inner debates he’ll go through in a few years. Maybe he’s not aware that a lot of his fellow disabled people are sick of being called “inspiring”. On the other hand, 17 isn’t 10. Maybe he knows exactly what he’s up to. Maybe “inspiring” is exactly the right word as far as he’s concerned. Maybe he doesn’t care what the rest of us might think about it. Or, maybe he’s just a kid like many others who gets a kick out of using social media to express himself and get a little bit famous.

Nick says in the article that he's never met anyone else with his condition, but that's because his specific condition is extremely rare. I wonder if he's met other physically disabled people ... amputees, wheelchair users? Or, does he get most of his signals on what it is to be a disabled person from non-disabled people, like his parents, teachers, and friends? How much of a difference might that make?

It’s hard to tell from just the article, but I have the feeling that Nick is off to a pretty good start as a thoughtful, disabled person ... but just a start. He may make a terrific advocate and peer mentor. He’s probably got a few unexpected realizations ahead of him. I hope if he does, that he comes out happy and positive in the end, with maybe a touch more sophistication and a clearer expression of what he's doing.