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.

Post-Trip Reviews

Thumbs Up

• 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

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.

What Kind Of Disability Website Would You Visit?

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.

Click here to take the survey.

I'll also leave a link to the survey up on the right-hand column, more or less permanently, so future visitors can add their input.

Disability Song?

Victoria Williams, "Loose" - "Crazy Mary"

Pearl Jam, "Sweet Relief - A Benefit For Victoria Williams" - "Crazy Mary"

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.

"Smart Ass Cripple" Sez

Last week, Smart Ass Cripple started out unpacking the term "Special Needs", and as usual ended up saying some bigger things than when he began.

Special Needs

Smart Ass Cripple

"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.

Followup

Another thought on "Inspiration Porn" ...

99% of the time, I don't like sentimentality.* "Inspiration Porn" relies on sentimentality, so I guess predisposed to hate it. Which is not the same thing as objecting to it or arguing that it is harmful. I think it is, but mainly I just don't like it. It's yuck.

==========
* The 1% represents the love scene from "Say Anything", the La Marseillaise scene from "Casablanca", and all of "Before Sunrise".

Are There Any Good "Disability Songs"?

Large percentages of popular songs are about being a woman or being African-American. There are also some sub-genres of folk music from specific ethnicities that are nevertheless widely popular, like Celtic or Latin music. There are entire sectors of the music industry devoted to what it's like to be Southern and / or rural, and working-class in America, i.e., Country Music ... or young, i.e. 98% of all popular music.

Yet, I can't think of a single song, much less a genre or sub-genre of popular music that clearly expresses or represents disability.

Yes, there are people with disabilities and others who write songs for a niche audience of disability activists, but that's not what I'm asking about. Folk or protest songs about disability may be incredibly rich, eloquent, and beautiful, but if they are mainly shared at conferences and marches, then their social significance and impact are limited. They don't have the reach of other genres that do speak of distinct groups, but to a broad audience. And I'm not even really looking for a genre. One song would do.

Can you think of one bona-fide, disability themed, popular song?

"Inspiration Porn"

I read a post yesterday by one of my Facebook friends, who used the term "Inspiration Porn". She was referring, I believe, to pieces of culture ... photos, slogans, news and human interest stories ... that show people with disabilities either doing extraordinary or sometimes quite ordinary things, with an implied or directly stated message that the viewer should be amazed and inspired.

The term struck a chord with me. I immediately thought, "Wow, finally a name for it!"

Its something most people with disabilities are familiar with, even if we don't have a name for it. Most of us also instinctively dislike it. Some are deeply offended. Some are annoyed. Some are just mildly disgusted. Our reaction varies, but I think we all know it when we see it ... well-intentioned propaganda meant to help us, that actually turns our stomachs. I'll have more to say about this as I read more, think more, and unpack the concept.

Let me say a few things to start off.

- One of the comments I read from an article on the subject pointed out that whether intended or not, calling these photos "inspiration porn" could be extremely demeaning to the people in the photos, because it put them in the position of people who appear in actual pornography.

- On the other hand, maybe this is apt, since many people would argue that people in pornography are victims of it, and perhaps the same is true of the people with disabilities in "inspiration porn". Whether or not they choose to participate for whatever reason, in a way they are being exploited.

- Where is the line between "inspiration porn" and just a nice picture of a person with a disability? Are the photos at the top of this blog "inspiration porn?"

- Another way that this phenomenon is similar to pornography has to do with the famous phrase by Supreme Court Justice Potter Stewart, addressing how to define pornography: "I know it when I see it." I think the same applies to things that are or might be fairly called "inspiration porn." It is hard to define exactly, but we know it when we see it.

When I read this in my friend's Facebook post, I had already been thinking for awhile about some of the "inspirational" pictures and posters I see every day on Facebook, especially a rather strange sub-genre featuring extremely sick young children. They are so prevalent and so similar in their arrangement, captioning, and attached comments that they really seem to be some kind of enthusiasm or obsession. Frankly, I find it creepy.

How does this relate to disability-based "inspiration porn?" I'm not sure. But it's interesting to me.

One Word

If you had to sum up the totality of the disability experience, for yourself and the disability community as a whole, in one word, what word would you choose?

I've been thinking about this a lot as I try to figure out what the point of view of this blog will be. Too often in the disability world we try to answer questions like this strategically. We might think about it a bit too hard and then pick a word that conveys a particular message we think we should convey, or a word that elicits some emotion we want other people to have about us and our situations.

At some point I think it's important in an exercise like this to pick something that fits and resembles what living with disabilities is like ... something that all people with any kind of disabilities can relate to.

My choice:

Exhaustion.

Everything's Fine

There is a line, and a few variations on the line, that crops up throughout comedian Tig Notaro's "Tig Notaro: Live" recording:

"Guys, relax. every thing's fine. I have cancer."

She says this several times, after people in the audience have apparently expressed some form of shock, sadness, or pity for her topic of the evening … her recent cancer diagnosis. Notaro's tone of voice is, itself, compassionate, sympathetic, almost pitying towards her audience. She really wants them not to feel bad for her. Empathize, maybe, but not feel sad about it.

Disability is different from illness in fundamental ways, but I think this line is a good way to sum up the positive, optimistic side of disability. If only to get past the furrowed brow and awkward questions, we want to tell the non-disabled people we meet:

"Guys, relax. Everything's fine."

Because in a sense, everything is fine. Usually. Most days. More days than not. For all intents and purposes, for me, as a person. Everything's fine. Things don't always go fine, and there are lots of things in the world that aren't fine. But I'm fine.

I do highly recommend everyone buy and listen to the whole performance:

Tig Notaro - "Tig Notaro: Live"

As disabled comedians must know, it's hard to make disability or illness funny and relatable. It's hard even for people who have lived all their lives or for a long time with their disabilities. Tig Notaro did it perfectly the first time, and based on the details of her story, it was a completely new experience for her.