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.

People With Disabilities and Guns

As a person with physical disabilities, I am more physically vulnerable than most people, yet it's never seriously occurred to me to own a gun. Do people with disabilities own guns at a higher rate than the general population? If not, are we being foolish?

I think whether people with disabilities should be allowed to own a gun should be judged on a case-by-case basis, based on the same standards as anyone else, whether that "bar" is high or low. For myself, even if I was inclined to get a gun for protection, knowing my own physical boundaries, I don't think I could "safely" use a gun. I might be more likely to need one, but I'd also be more likely to miss my shot, or have it taken from me by an attacker.

Pistorius' Side Of The Story

Oscar Pistorius tells court how he shot girlfriend Reeva Steenkamp
Alex Perry, Time Magazine

I am tempted to believe Pistorius' story. It makes a horrifying sort of sense. Of course, we haven't heard the full prosecution case yet, and they have already said that the police had been to the house before on "domestic" calls ... not proof, but a possible indicator of a different explanation.

Still, if Pistorius did accidentally shoot Ms. Steenkamp, then by his own description, it was something far worse than an accident. I'm of the opinion that guns are terrible self-defense tools for the home, so I'm biased here. But if Pistorius' story is true, then it's a strong argument that guns in the home are more of a risk than a protection. Apart even from that, taking multiple shots at a closed bathroom door indicates either extreme stupidity, or extreme paranoia of the kind that would call for some kind of counseling, even without an "incident".

Note also that Pistorius mentions when he did and did not have his prosthetic legs on. He doesn't explicitly say that he was more afraid of the supposed intruder because of his disability, but he does kind of relate his need to defend himself and Steenkamp to the fact that he wasn't wearing his legs. I wonder if we'll hear more from Pistorius or his defenders about ways his disability might relate to all of this.

On the other hand ...

The Onion's Tips For Not Accidentally Murdering Your Girlfriend.

Fun With Signs

John Hodgman (a.k.a. Judge John Hodgman) posted this photo and caption on Twitter and Tumbr:

"This is pretty good advice even if you are NOT on a cruise ship, surrounded by miniature wheelchair people. (at Royal Caribbean Freedom Of The Seas)"

Several layers of funny there.

Followup Question

How many of us who have disabilities actually feel any personal stake in celebrities who also have disabilities? Do you care about Oscar Pistorius in any kind of special way ... positive or negative ... because of his disability? Are you more interested in famous people when they have disabilities, or is your interest level determined by other factors, on a case by case basis?

Oscar Pistorius

Is the developing Oscar Pistorius murder trial story in any way a "disability" story?

Yes, because the reason we even know his name ... and probably the only reason we know about Reeva Steenkamp's murder ... is because of Pistorius' 2012 Olympic performances. And the main reason we knew about those was because he was the first Olympic track athlete who ran on artificial legs.

or

No, because as far as we can tell or plausibly imagine, Ms. Steenkamp's murder, whether by Mr. Pistorius or not, had nothing to do with Pistorius' disability.

Or, maybe his disability was one of several elements that lead to what appears to have been a horrible crime. We often make the mistake of thinking that a person's disability either has nothing to do, or everything to do with their character or actions. This is especially true when the person either achieves something great ... like competing in the Olympics ... or does something dreadful ... like killing a room full of schoolchildren, or their girlfriend.

For those of us who have disabilities, its a seesaw. We want to claim "our" heroes, though we sometimes kind of resent them because their spectacular successes challenge us in ways we can never realistically meet. When disability becomes connected with tragedy or evil, we naturally, often rightfully, point out the ways that disability is unrelated.

But a disability is almost always two things at once ... a defining characteristic, and just a thing. It can't explain everything about us, but it has an impact on each one of us, whether we know it, like it, or not.

In the meantime, here's a thoughtful piece about what Oscar Pistorius meant, and now means for South Africa:

Oscar Pistorius: South Africa's symbol of hope shattered
Donald McRae, The Guardian

Update:

A Time.com article summarizes the case against Pistorius. It doesn't look good.

Details emerge of girlfriend murder case against "Blade Runner" Oscar Pistorius
Alex Perry - Time.com