July 16, 2003

Making Accessible Minds

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.

[Listening to: Cloudbusting - Kate Bush - Hounds Of Love [EMI 100 Specia (5:09)]
Posted by wintermute2_0 at July 16, 2003 11:44 AM | TrackBack
Post a comment