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.

I’m thinking about participating in the 2003 Blogathon on July 26-27. The Blogathon is similar to the old bowling-for-charity concept. I would make a blog entry roughly every 30 minutes. Sponsors would agree to donate money to my chosen charity. I would probably do it for either a disability or legal rights charity. I think I could make it…only the last 4 or 5 hours would be rough. Maybe I could get some people to come over or call me to keep me awake. What do y’all think? Would you pony up some money to see me go without sleep for 24 hours? Maybe I could hook up a webcam so you can watch me turn into a zombie.
Got my Minnesota ID card in the mail. I look like such a dork. I have this blank, wide-eyed expression that makes one think I’m stoned out of my gourd. I’d post the picture, but it’s just too painful to look at.
A white ago I posted about the boy who was breeding insects in his body. Well, the poor kid is still suffering. The very thought of flies taking off from inside…down there…just seems too painful to imagine.
Susan Smith, the woman who drove her kids into a lake and then blamed it on an African-American carjacker, has posted a personal ad on the Internet. Ten bucks says she gets at least a dozen marriage proposals in the first week.

As promised: