Today I was sitting in a meeting where we were reviewing the rough cut of a video that generally addresses disability and employment. One woman, who represents a non-profit that works with people with developmental disabilities, was very critical of the video because she felt that it didn’t show enough people with that type of disability. Okay, fine. Then she said that that the video used only “upper crust” people with disabilities. For her, “upper crust” meant people with physical or invisible disabilities. My jaw dropped. In the most diplomatic language possible, I told this woman that every disability manifests differently and that we shouldn’t start playing the old game of Disability Hierarchy. The Disability Hierarchy is a concept that has plagued the disability community for years. At its crudest level, the Hierarchy is a measure of the social acceptability of various disabilities. On the top of the Hierarchy sit people with mild physical disabilities that are easily overlooked by the general public. They are followed by people with more visible physical and sensory disabilities (paraplegia, cerebral palsy, blindness, deafness, etc.). Below them are people with developmental disabilities. People with mental illness have historically occupied the bottom rung of the Hierarchy because of the extremely negative connotations society associates with mental illness. You can see how this is a pretty fucked-up view of disability. This bullshit Hierarchy doesn’t exist except in people’s heads and it perpetuates itself with surprising vigor. Advocates and even people with disabilities themselves ascribe to this nonsense. I’ve been in discussions where one subgroup will try to proclaim its own hardships as more worthy of attention than those of another subgroup. Different disability groups fight it out amongst themselves at state legislatures in a mad dash for a meager piece of an ever-shrinking pie. It’s so frustrating to watch and that’s what went through my head when this woman made her stupid remark. I can’t help but feel sorry for the clients who are represented by an “advocate” who views them as something less than “upper crust.”
Oh, good news! According to the oh-so-competent people at Hennepin County Economic Assistance, I’m no longer disabled! And on upon determining that I’m miraculously cured, they closed my Medical Assistance case. MA is what pays for my nursing care, equipment, meds, etc. Fortunately, my job connections helped me figure out the obscure bureaucratic snafu and things will be remedied soon. But I have a hard time imagining how the average person with no background in this stuff navigates the system without going crazy.
I love Eschaton. Apparently, the FBI has been reduced to following up on anonymous tips about an individual’s suspicious (i.e. liberal) reading habits. Guess I better not read The Guardian unless I’m absolutely certain I’m alone.
The World Bodypainting Festival is coming up and I thought I’d show a nice example of the craft. Avert your eyes if you’re offended by the naked human form:

Wow, I made BoingBoing. I can die happy now. Thanks, Xeni!
I don’t have a lot of time to write now, but I’m grateful for all the attention. I’m trying to think of ways to make this blog more interesting on a continual basis, so stay tuned…

Lately, it’s occurred to me that, as in real life, I’m something of a novelty in the blogosphere. For those of you who don’t know me or haven’t read my blog before, I have a disability called spinal muscular atrophy. It’s a neuromuscular disability that I’ve had since birth. I use a wheelchair to get around and a portable ventilator helps me breathe. As an added bonus, I need a nurse with me 24 hours a day. I have very little use of my arms or legs, but I can type this blog with a headset that emulates a mouse. Straight from my head to the screen, as it were.
In my own limited research, I haven’t stumbled across any other blogs where the authors have identified themselves as having a disability. That doesn’t mean other people with disabilities (PWD) aren’t blogging; they almost certainly are. But I started thinking about my own reasons for blogging and how I’m perceived by others who read this site regularly.
For me, my reason for blogging is simple: I like to write. In a life where I have to depend on others for everything from turning the page in a book to taking a piss, writing is one thing that I can do independently. With the right hardware and software, I’m good to go. And I’ve always felt that people take me a little more seriously if they meet me through my writing first. When I was job-hunting, I always tried to send a copy of my law journal article to the potential employer before the interview. My first girlfriend and I met after exchanging a number of e-mails. It’s not that I don’t think I’m inarticulate in person. But I speak slowly and softly, which makes me a little self-conscious. And whenever I meet someone, the first thing they always my wheelchair and/or my ventilator. Another person’s first impression of me is always going to be “The Guy in the Chair.”
But I didn’t start writing this blog as a way to scream “Hey, look! I’m a cripple and I blog!” I just wanted something that would get me to write more. And because of my disability, stuff happens in daily life. It can be something funny or silly or just frustrating, but it’s usually interesting enough for me to want to write about it. And that’s probably where the novelty comes in. Many of the Anonymous You have probably never met someone with a disability, at least not a visible disability. By reading my stuff, you get a little peek into a life that’s at once very similar and very different from your own life. You may read this site and feel amusement, puzzlement, voyeuristic fascination, or even pity. I have no idea.
And here’s why I think blogging can be a great tool for PWD. Having a disability can be a truly isolating experience. When you consider that around 70% of PWD in the U.S. are unemployed and a significant portion are living at or below the poverty line, it’s easy to see why we still dwell at the margins of society. Blogging can be a way for a person to shout out their existence to the world; to give people other views on disability that have nothing to do with a telethon or a human interest story on the local news. Blogging can be as real and as honest as the author wants it to be. Blogging can be a way to fight the loneliness that plagues every human being, not just those with disabilities.
So as big companies like AOL start to deliver blogging to the masses, I hope they remember to make those tools accessible to everyone. And I hope broadband becomes more affordable for everyone. And I hope people with disabilities are encouraged to share their stories.
Thanks for listening.

I see the Bushies are doing their part to stimulate the economy. I’m old enough to remember when Republicans used the word “deficit” as an epithet on par with “liberal.” But hell, what do they care. It’s us Gen X’ers who will get to pick up the tab. Oh well, the whole idea of retirement always sounded kinda boring.
A quick word on AOL’s planned entry into blogging. Great idea. Despite blogs having been around for about 4 years, most people I talk to still have no clue what a blog is. This could bring the whole concept mainstream. It might also help wake up the current blogging community, which tends to be self-referential and narcissistic.
Not that I’m any of those things…

I had to bug out of my apartment for most of the day because I had my carpets cleaned. One thing about living in a condo is remembering all the assorted and utterly asinine bylaws that were drawn up by a bunch of retirees and anal retentives. Like the Rule about no “renovating” after 1 p.m. on Saturdays. My asshole neighbor made certain to remind me of this Rule when the nice young people cleaning my carpet were still not done by 1:05. So now I have an official Complaint filed against me. I’m not sure what this means, but I suspect I have to go before a Council of Elders and impale myself on a ritual dagger or something like that. I think my asshole neighbor has mutant super-sensitive hearing because he’s also complained about my ventilator and other equipment sounds. My asshole neighbor probably agrees with Michael Savage’s remark about this country being taken over by the “cripples.”
Did I mention my neighbor is an asshole?
But the good thing about today is that I was out on the streets, taking in the scene. I saw 28 Days Later, which was a lot of fun. Even the soundtrack caught my attention. Danny Boyle and I seem to like the same music. I had never heard of Underworld until I saw Trainspotting. And my goodness, there were all kinds of beautiful people walking around downtown tonight. I felt like Quasimodo in comparison. Lovely women with brilliant smiles in summer dresses or denim shorts with legs that go on and on like a song that you just can’t get out of your head. An absolutely stunning Hispanic woman with ringlets of auburn hair standing outside Orchestra Hall with her boyfriend, looking bored. The two women walking ahead of me, all dressed up in clubbing apparel. One had on a Hello Kitty backpack, which up until now I thought was just a club kiddie stereotype. Guess not.