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.
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 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:
"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."
"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.
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".
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.
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.
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.
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.
Chairs and benches evenly distributed all around airport corridors, so you're never more than a few strides away from a place to rest.
Even if you didn't ask for wheelchair assistance in advance, you can ask for it when you get off the plane and they'll give it to you without extensive questions or excessive waiting.
Moving sidewalks.
Thumbs Down
Airports where instead of a jetway, you have to board a shuttle bus that takes you to or from your plane.
Weird gate numbering systems, wherein Gate 25 and 35 are at opposite ends of the airport instead of being, you know, ten gates down the same concourse from each other.
Wheelchair handling. I've seen baggage handlers try to push a large, expensive electric wheelchair, even though its wheels are obviously locked and the tires are studdering and scraping across the tarmac.
Not Sure What To Think
TSA doing a full-body pat search on a visibly disabled person, specifically, me. Basically, I figure it's fair play, and no more stupid than any other aspects of "security theater." Plus, the guy doing it was exceedingly polite and respectful.
Air travel is a hugely revealing experience for people with disabilities. It simultaneously grants us incredible mobility, and throws our incapacities and dependencies into stark relief. Depending on the type and degree of your disability, and no matter what airline websites and federal regulations say, it can be nearly impossible to get your body onto a passenger aircraft, and entirely impossible to do so with dignity. The boarding, seating, and de-boarding process even divides people with disabilities from each other; quadriplegics have a far worse time than paraplegics, those of us who walk … even unsteadily … find getting on and off the plane to be the easiest part of the whole trip. In fact, as a walker myself, my relative facility for getting on and off a plane efficiently makes me feel more physically capable than I feel on most ordinary days.
Photo from airliners.net
If you do need help though, at any stage of the air travel process, you have to come to terms with true helplessness. You have virtually no control over what will happen. Most likely, things will go mostly okay. There are reasonable regulations, and most people mean well. You probably won't die, or be seriously injured. But whatever happens all you can do is put your faith in "the system". Even skilled advocacy may not help. The social rules you live with on ordinary days don't fully apply. The strategies you normally use to cope and carve out areas of independence and choice don't apply in the usual ways. Even non-disabled people who fly regularly know this. It's why so many people of all abilities dread air travel. As a person with a disability, your ability to give up and say "screw you guys, I'm going home" is even more limited. This is one of those situations where attitude really does make a difference. If you go into air travel thinking that things ought to work the way they're supposed to work, then you'll have a terrible experience, not just physically but psychologically. On the other hand, if you enter air travel world with the understanding that it is almost like a different culture you're entering, then you may be able to protect your self appropriately, get where you're going, and roll with the punches in terms of changing plans and expectations. Plan ahead, for sure. But assume that what actually happens on the day will be different. As an aside, I've often thought that non-disabled people who want to understand what everyday life is like for people with disabilities should just think about the last time they took a complicated airplane journey. That's what it's like most people with disabilities run our everyday errands. About the only tool that's about as useful in air travel world as it is in the regular world is money. The Air Carriers Act is an important law and I'd fight if it were ever under threat. What enables me to fly despite my disabilities is mainly a wad of $5 bills to give to people who will help me get me and my stuff through all those interim steps that others take mostly for granted. Car to terminal, to baggage check-in, to a gate that may be steps away or a mile away. And reverse on the other end. $5 bills can really iron out a lot of the wrinkles of traveling with a disability. Of course, the ultimate liberation is that, ordeal or not, if you can fly at all, you end up just as much in a whole different city … or a whole different continent … as all the non-disabled passengers you flew with. Everybody who flies knows what this hyper-mobility feels like. People with physical disabilities, I think, feel it more keenly. All of which is on my mind because I'm traveling to North Carolina tomorrow to visit relatives. I'm excited and apprehensive, in equal measure. Wish me luck, because ultimately that's all I've got.
I just set up an online survey on what kinds of features and styles people with disabilities might be looking for in a disability-themed website. One day I hope to expand beyond this blog, but there are so many options that I'd like some feedback first.
This song was written by Victoria Williams, a 1980s / '90s folk singer who in 1994 developed Multiple Sclerosis. Pearl Jam gave the song wider exposure when they covered it on the "Sweet Relief" album, a collection Victoria Williams covers by several '90s Alternative bands … which benefitted Williams. I remember that the liner notes explained about her MS, and the fact that she lacked health insurance.
"She lived on a curve in the road, in an old tar-paper shack. On the south side of the town, on the wrong side of the tracks. Sometimes on the way into town we'd say: "Mama, can we stop and give her a ride?" Sometimes we did but her hands flew from her side. Wild eyed, crazy Mary."
I don't know if this qualifies as a "disability song", but the character of "wild eyed, crazy Mary" does seem to fit the vague role of "village person with a disability" (there's another, more familiar term for that, which I won't use here). The song is a lovely but haunted sketch of being young and poor in a rural American town, and Mary is just part of the landscape. She's not "normal", but the child who sees her is drawn to her, as to any mystery. She's an alien presence. It's not a happy portrayal, but its more curious than sinister.
"Nobody wants to be perceived as needy because nobody likes needy people. We all act like we love the needy but we don’t. The only people who like hanging around needy people are heavy duty codependent types."
I don't actually think this is accurate. I think plenty of people who "work with" people with disabilities are in it for other reasons, including a simple interest, or paycheck. I like the ones doing it for the money because their motives are simpler and easier to satisfy.
But I think the codependency tag works very well in two ways: as a cautionary tale for the workers, and as a signal to people with disabilities that it is okay to question the intentions of the people who serve us, especially if what they're doing isn't working for us.
