About "Awareness"

Its often hard for us to communicate to others what we, as people with disabilities want, but something that gets mentioned a lot is "Awareness" ... as in "raise awareness about (fill in your specific disability, condition, or issue here)."

What, exactly, are people supposedly un-aware of? Why do we want them to become more aware of these things? How will our lives be better once people become "aware"? Is my version of "awareness" the same, or even remotely similar to yours?

Unfortunately, "awarenss" is one of those words that is widely used but rarely defined or explained. That makes it easy to dismiss or mock ... a piece of verbal fluff that makes it seem like we've said something, and allows us to avoid the difficult task of actually explaining ourselves.

But clearly, each person does have something in mind when they say they want to raise awareness about disability. So no joke, no snark ... I'm really asking, what does "disability awareness" mean to you?

Smart Ass Cripple on Roger Ebert

I knew that Smart Ass Cripple would have something to say about Roger Ebert. It's better than I expected, and I expected it to be great:

Viva Roger Ebert!
Smart Ass Cripple

I'm extra glad to have this, because it provides real evidence that Ebert was truly "one of us". Better yet, he so generously recognized a talent possibly equal to his, one with barely a shred of his fame. And he clearly learned, eagerly, from his disability experience, and bowed to the even greater (longer at least) experience of a fellow "cripple".

More About Roger Ebert

I only have one partially-formed thought to add on Roger Ebert.

"Famous People with Disabilities" are tricky, for many reasons. For one thing, some people are famous for their disabilities, while others seem to be famous for other things, and their fame spills over into the disability aspects of their identities. And then there are those who are, in fact, disabled in some way, but you'd never know it, and the people themselves never refer to it.

Roger Ebert seemed to take a different approach. He became disabled quite late in an eventful life, long after achieving the essential fame with which he died … as America's premier film critic, a role model for generations of film critics and just plain film lovers after him. He remained mainly a film guy after the onset of his disability, and never tried to put himself forward as a disability spokesperson or leader. But he did talk and write about his experience of disability, sparingly, carefully, but always with feeling and insight. Best of all, like the true critic he was, he sought out and publicly appreciated others with disabilities and what they had to say. Its almost as if he took pleasure in being a student of disability … the new guy so to speak. But a new guy who happened to have a gift for analysis and clear expression.

Film critics appreciate and strive to understand experiences on multiple levels, seeking both superficial pleasure and deeper meeting. Maybe that's why Roger Ebert's occasional discussions of disability were so fresh. He knew how to help others understand disability as he experienced it, while also finding deeper significance and seeing connections to other areas of faith, identity, communication, and politics.

I've collected links to many articles that came out yesterday about Roger Ebert, most of them from other film critics and others who write about popular culture. What I'll share here is a Tweet and a bit of affectionate satire from The Onion:

TV critic Mo Ryan Tweets:

"An Ebert quote that helped get me through some dark times: 

"I believe that if, at the end, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhapy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this and am happy I lived long enough to find it out."

Roger Ebert Hails Human Existence As A Triumph

The Onion

Roger Ebert, RIP

I was working on a grant proposal form my former employer, and I needed to look something up so I opened my browser, and the first thing I saw was the very sad news that Roger Ebert has died.

To most people he was a movie critic, maybe The Movie Critic. And he was to me, too. But, over the last ten years as he battled cancer that permanently altered his physical appearance and functionality, he also became a person with a disability. And not just as other people reckon it. He wrote about it occasionally, and most recently his Twitter feed regularly included links to the Smart Ass Cripple blog, which I guess was one of Ebert's regular reads.

Once I finish this other thing, I'll come back and maybe post some links and further thoughts.

Coming soon ...

I've got some reading to do.

There have been several articles and radio programs recently. They are on the subject of disability benefits, possibly suggesting or "revealing" that lots of people on disability might not really be disabled in the conventional sense, but rather long-term employed and put on disability for lack of any other backup benefit to support them. That much I get from the headlines, but since I haven't read the articles and listened to the programs, I don't know the details, or what the journalists and analysts make of it all.  I've thought for a long time that disability was a messed-up program, but in very specific ways. I'm nervous about what people will think and conclude, given how easy it seems to be to misunderstand disability issues.

Sometime in the next day or two I plan taking a look myself, and maybe commenting.

%&@*#!

The disability movement needs more swearing.

Gotta Go?

This morning quite by chance, I ran across this Huffington Post article:

Time for New York State to Pass the Restroom Access Act
Rebecca Kaplan, Huffington Post

It's about a bill to require public places that have restrooms but only for employees to allow customers to use them anyway ... if they have "inflammatory bowel disease".

My first thought was, "Damn! I thought it was going to be about making public bathrooms wheelchair accessible!"

My second thought was that the law sounds like a good idea, but a bit narrow. Why couldn't public restroom accessibility be addressed more broadly, encompassing wheelchair accessibility AND overall access? One reason is that simply allowing someone to use your restroom doesn't require you to do anything to it to make it bigger or more maneuverable; it's just a matter of saying "yes" instead of "no".

Another thought occurred to me as well. Apparently, the proposed Restroom Access Act would require people asking to use restrooms under these special circumstances to prove the legitimacy of their need. The article even mentions an already existing calling card of sorts that is part of the Medic Alert institution ... a sort of get-to-use-the-restroom-without-being-hassled card. I can see how something like that might be useful, especially for a disability or medical condition that doesn't disclose itself ... that's "invisible". It's like something I've seen a few times in my life ... a deaf person using a card they carry around that explains to people that they are deaf and what accommodations would be most helpful.

I have thought on occasion that something might be useful to more people with a variety of disabilities. It might be useful to me, even though I usually manage to speak for myself when I need help from strangers. I'm uncomfortable, though, with the idea of something like this being "proof" or "certification" of my disability. Proof of need implies some terrible downside to someone getting something they don't deserve. Where, exactly, is the downside to getting a little extra help from staff in a public accommodation ... or getting to use an employee restroom when you have to go really bad, whether you have inflammatory bowel disease or not?

"Money, That's What I Want"

Money doesn't literally "buy happiness", but it's damned useful to people with disabilities.

Money is the ultimate adaptive technology. A wheelchair can only be useful as a wheelchair. You can't obtain food with a hearing aid. A counseling program won't help a quadriplegic get out of bed in the morning. Money, though, in the right quantity, can be translated into just about anything a person with a disability needs to unlock their potential and make their theoretical independence real.

Money can buy the materials, labor, and expertise to make a home wheelchair accessible.

Money pays for the training and care of a guide dog for a blind person or service dog for a wheelchair user.

Money funds innovation in prosthetics, and purchases the results for an individual amputee.

Money can be exchanged for the consistent, reliable personal care that can only be obtained otherwise through family ties or the kindness of friends or volunteers.

Sometimes, money can even buy a more individually-crafted education for someone with a learning disability, or counseling and medications for people with mental illness.

Best of all, the money itself works well for any of these or other uses. It doesn't have to be re-designed in a different form for each use. Give 10 people with 10 different disabilities $50,000 to improve their lives, and the same money will be used for 10 different combinations of goods and services. In short, money is the most flexible, adaptable, and individualized disability program conceivable.

All of which is to endorse a radical notion, one that runs completely against conventional wisdom in several ways: give people with disabilities money, and more of it.

I'll have more to say about this, but for now, I recommend reading two articles:

Fighting Poverty By Giving Poor People Money

Matthew Yglesias

Moneybox, Slate.com

"There's more to life than just this, but I've come to think that directly transfering cash money to people in need is the most underrated tool around for fighting poverty."

The Federal Definition of a Broke Ass Cripple

Smart Ass Cripple

"SSI is the primary means of income for about 7 million broke ass American cripples. And I do mean broke ass. The average monthly SSI payment is $519."

The first article doesn't say anything directly about people with disabilities, but both articles point in their own ways to how obvious, and maybe overlooked, the importance of money is in alleviating poverty. I don't think there is a group of "disadvantaged" people who can make more effective use of plain and simple cash than people with disabilities.

And then there's this ...

Disability As A Topic

I think that I got two topics confused the other day in my blog post titled, "D Section, Back Page". On the one hand, I have been thinking about the fact, as I have observed, that personal stories about one's disabilities are just of limited interest to others as a topic of causal conversation. At the same time, I was thinking about how disability issues are categorized and prioritized, in part by newspapers, but also in other media and political discourse. I feel like people's limited interest in the day to day problems of a person with disabilities is reflected in the fact that disability is rarely seen as something of broad, national concern.

This is a problem, but I don't disparage this lack of interest or attention. Despite decades of progress, disability is still largely viewed as a medical problem, and is there anything duller than other peoples' aches and pains? To be sure, most people will focus and feel appropriate concern, for a short time, when confronted with an individual disability story. But these have a notoriously short shelf-life. At some point, you just want to ask, "Is there anything else we can talk about?"

The reason this is a problem is that disability is also about fairness and equality, laws and policies, labor and economics, debt and the role of government, education and poverty, freedom and security, youth and aging, gender and sexuality, and yes, it's about how fairly and effectively health care is delivered to everyone.

Disability in the narrow sense isn't the most interesting or central topic imaginable, for anyone but those of have one, but it is a useful and often unexplored pathway the most passionate and critical debates currently going. Its in that sense that I think it belongs on the "Front Page".

Inspiration, Done Right

Yesterday, I read a lengthy Facebook post by Wil Wheaton. Depending on your age and level of geek cred, you might know him as one of the kids in the film "Stand By Me", as Wesley Crusher on "Star Trek: The Next Generation", or from occasionally appearing as a fictionalized version of himself, serving as Sheldon Cooper's nemesis on "The Big Bang Theory". Beyond his specific acting roles, Wheaton was an early and admired blogger, and has become something of a geek culture icon, who also seems to be a genuinely thoughtful, insightful, and articulate person.

In his Facebook post, Wheaton describes an encounter he had with a woman at a "Con", or sci-fi / fantasy convention. The woman told him that when she was young and dealing with severe physical impairments, she would focus on a photo she had of Wheaton as Wesley Crusher, which gave her strength and inspiration. She told him that he inspired her in this way to reach an adulthood in which, among other things, she is able to walk. She wanted Wheaton to know how much he meant to her, then and now. Wheaton describes how moved and inspired he was by hearing this story and meeting the woman. There were tears on all sides.

Wil Wheaton Facebook Story

What impressed me wasn't so much the events themselves, but the fact that Wheaton managed to tell the story in a way that was very emotional, but without spilling over into sentimentality. The story didn't make me gag, though a word or phrase placed differently could easily have done so, and the basic outlines of the story should have. At a couple of moments, I felt my eyes starting to roll, but somehow Wheaton kept the story on the tracks, and I enjoyed reading it untroubled.

I'm not sure what made Wil Wheaton's story inspiring in the best way, and avoid becoming "inspiration porn." It was a close call. Was it the words themselves, or my pre-knowledge of what kind of person Wheaton is? Maybe it was a little of both. He told the story well, with just the right mix of pride and humility, sentiment and stoicism, humor and crying. At the same time, I already knew that Wheaton is no fool, and that his way of thinking and expressing himself is similar to mine. That's no guarantee. I think most people with disabilities know the feeling of hearing someone you love and respect say something really stupid or clumsy about disability. But a good track record of thoughtful intelligence is an indicator.

The other thing I took away from reading the post is that while it's healthy to call out sentimentalizing of people with disabilities, people really do crave inspiration and role models. Instead of trying to eradicate inspirational disability stories from the public discourse, maybe instead we try to come up with tips on how to do it right.

D Section, Back Page

I'm unhappy with my post suggesting that disability, as a topic, is boring. While I think that it often is, that's not what I was trying to say. I think a newspaper analogy works better.

Most of the time, disability is a D Section, back page topic. Its relegated to the Lifestyles or Health section ... you know, in peoples' heads.

Disability should be in the News section sometimes. Page two will do, but maybe once or twice a year it ought to make the front page.

Just Trade The Word "Disability" ...

Why a teen fashion blogger / feminist is my newest role model.

I first learned about Tavi Gevinson three months ago, at about the time I was getting ready to re-launch my blog about politics and popular culture. It was also a couple of months after I'd quit my Executive Director position at an a small Center for Independent Living, where I had worked for over 22 years. One of the reasons I left was because I felt burned out, and wanted to explore other ways of helping people with disabilities understand their experience. I also wanted to understand it better myself. Yet, here I was, getting ready to revive my old blogging habit with posts about Fiscal Cliffs and TV shows. They're fine topics, and I have gone ahead with that, but do I have anything unique to say about disability?

Then I read a New Yorker article about Tavi Gevinson and her website for teenage girls, Rookie.

In her presentation here, Gevinson talks about the difficulty of finding strong female characters in popular culture. You can find strong female characters in movies and on TV, their strengths tend to be defined by singular, narrow characteristics:

"They're not strong characters who happen to be female. They're completely flat and they're basically cardboard characters. The problem with this is that then people expect women to be that easy to understand, and women are mad at themselves for not being that simple. When in actuality, women are complicated, women are multifaceted. Not because women are crazy, but because people are crazy, and women happen to be people."

Now try this. Replace the words I've colored red with "people with disabilities", or your favorite "disability" term, and these observations are just as true. The same holds for lots of the articles and blog posts on Rookie about being female and a teenager.

After reading the New Yorker article, and then exploring the Rookie website, I came to what should have been an obvious thought. Disability is at least as varied, vexing, and misunderstood as being a teenage girl. Why not apply the techniques, models, and attitude of Rookie to the disability experience?  Start a blog on the topic of disability, and expand it into an online magazine / community by and for people with disabilities. Most importantly, give it personality and a point of view. Make it a site people with disabilities want to visit.

I am by nature cautious and, frankly, lazy. It is like me to think about a project like this. It is un-like me to implement it. I'm going to give it a real try though, and when I start to feel discouraged or bored, maybe I'll visit Rookie and see what Tavi and her crew are up to.

In the meantime, please do my online survey about what you'd like to see in a disability-themed website.

Boring!

Many of us who have disabilities find it cringe-worthy when people say we are "inspirational". At the very least, it's strange to live a life that could be a topic for a "human interest story" or a made-for-TV movie sponsored by Hallmark.

The truth, I sometimes suspect, is simpler. To most non-disabled people, the details of the lives of people who have disabilities are BORING. I don't mean uneventful. I mean of little or no compelling interest to anyone but ourselves, immediate relatives, or certain professionals and specialists. I also don't mean that our lives and struggles should be seen as boring. Some aspects of our struggles really do have wider meaning and significance beyond our own direct experience.

What I mean is that many of our experiences are, truly, our own and no-one else's ... and that things that connect us with bigger ideas like equality, discrimination, and prejudice are just too hard to communicate well to others. We haven't reached the point where disability stories are stirring, exciting or even controversial enough to sustain most peoples' interest or engagement.

In some ways, that's a good thing. I'm not pining for some equivalent of a race riot or something. But despite the many great leaders we've had in the "disability movement", I haven't yet heard our Martin Luther King, Jr. And I hate the feeling I get whenever I start to describe much of anything of my disability experience to others ... the feeling that I'm putting them to sleep.

Worse than that, I often put myself to sleep, too.