Jun 062008
 

This is terrible news. Harriet McBryde Johnson, the well-known attorney, disability rights activist, and writer, passed away at age 50 at her Charleston home. Johnson, who had spinal muscular atrophy, was an early critic of Jerry Lewis and the Muscular Dystrophy Association Telethon. Many of her writings appeared in The New York Times, including a magazine piece about her debate with Princeton philosophy professor Peter Singer. She also wrote a memoir, published in 2005, entitled Too Late to Die Young.

A website dedicated to Johnson’s memory can be found here. In the time she had, Johnson lived a rich life, accomplishing much and earning the the love and respect of countless others. We should all be so fortunate.

More about Johnson’s life and writings can be found at The Gimp Parade.

Jun 052008
 

Wow, you can get just about anything at the library these days. Not just the usual stuff like books and DVDs, but actual conversations with fascinating and exotic people. So-called “Living Libraries” give patrons the opportunity to reserve thirty-minute blocks of time with individuals of varying backgrounds; the idea being that face-to-face dialog is sometimes the best way to understand a perspective different than your own. If this concept ever comes to my local library, I’m going to sign up as a volunteer. I’m all kinds of interesting. But I’m going to give everyone this list of bullet points to prevent every conversation from covering the same boring territory:

  • No, I’m not in pain.
  • No, I was not in an accident.
  • No, I won’t give you free legal advice.
Jun 042008
 

The future is unknowable and anything can happen between now and November. But after watching both Obama’s and McCain’s respective speeches from last night, I’m thinking the only thing that can keep Obama out of the White House is a zombie uprising or an asteroid smashing into the planet. Obama comes off like a rock star. McCain comes off like the keynote speaker at a Kiwanis banquet.

It’s difficult to overstate the significance of Obama’s primary victory. He managed to bring down one of the biggest names in modern American politics and he proved that this country is still capable of rising above its own bloody history. Even those of us who knew he was something special back in 2004 are stunned that this moment has actually come to pass.

Jun 032008
 

Not long ago, I wrote about the stares I sometimes receive and my reactions to them. Montana-based artist Kevin Connolly, who was born without legs, took a more original tack and turned his camera on the gawkers ogling him in all corners of the globe. The photos capture people expressing varying degrees of curiosity as they check out Connolly. They really aren’t much different from the people staring at me. The human brain seems to be hardwired to respond to the novel and that’s why I have to wonder, if my own circumstances were different, whether I could be one of the people in these photos.

Jun 022008
 

I was in a retrospective mood last night, which led me to take a look at my old journal. Covering an eleven-year time span from 1992 to 2003, it’s everything you would expect from the journal of the twentysomething version of me. Self-indulgent, overly dramatic, and occasionally perceptive. I’m struck by how much time the younger me spent worrying about so many things: finding a job, not having enough friends, whether this girl might actually like me. I had a tendency to write many of those journal entries late at night, which probably explains why I come off sounding so emo. And the writing itself is…not good. I recognize it as mine, but it isn’t anything I’d want to include in a portfolio.

But my younger self was right about a few things. He was pretty sure it wasn’t impossible for him to see Paris. He was determined to live on his own someday. And he understood that he needs to keep writing because it’s the only thing that helps him make sense of everything.

Jun 012008
 

We’ve had a long winter and a cool spring here in Minnesota, which makes it easy to forget about the hazards that come with warmer weather. I was sitting outside with a friend at a nearby restaurant when my friend peered at me over her sunglasses. “You did put sunscreen on, didn’t you? You’re starting to turn a little pink.” Of course, I waved off her concerns. After all, I have a reputation as the toughest cripple on the block to maintain.

But as I’m sitting here at my desk, I’m feeling like I was left in the microwave for too long. Put a little steak sauce on me and I’d make a nice appetizer. I wouldn’t call it heat stroke. I’d call it lightly broasted.

On a completely unrelated note, I saw my first funnel cloud yesterday. It drifted through the southern end of downtown and I watched its progress from my window until it faded away.

May 312008
 

After observing the dust-up surrounding Al Franken’s 2000 essay for Playboy, one thing is eminently clear. I can so never run for office. This blog has enough material to kill any political aspirations I might have several times over. Imagine all the negative political ads that could result:

“Mark Siegel says he has your best interests at heart. But all he can really think about is fishnet stockings. A quick search of his blog reveals that he mentions fishnet stockings over a hundred times. Do we really want someone like him serving on our Parks Board?”

May 302008
 

Here’s an excerpt from an official guide for volunteers at the Beijing Olympics regarding appropriate disability etiquette:

Some physically disabled are isolated, unsocial, and introspective. They can be stubborn and controlling . . . defensive and have a strong sense of inferiority.

And believe me, that’s on a good day.
It goes on:
They show no differences in sensation, reaction, memorisation and thinking mechanism from other people, but they might have unusual personalities because of disfigurement and disability.

Wow, it’s like the people who wrote this book are talking about me.
I hope they didn’t leave out any vital information, like our hatred of sunlight and how we bring bad luck to anyone unfortunate enough to accidentally touch us.

May 292008
 

It’s all too easy to become jaded in this world of commonplace wonders. But some things still manage to impress me, like these pictures beamed back from the surface of Mars courtesy of the Phoenix lander. Shooting a probe at another planet and landing it successfully is no small feat and a million things could have gone wrong along the way. Not bad for the same race that invented ringtones.

May 282008
 

I went into this movie trying not to expect much. After the trauma the Star Wars prequels inflicted on me, I’ve become deeply suspicious of George Lucas’ efforts to revive the pop culture touchstones of my childhood. But soon comes a scene of Indy dodging Soviet bullets in a musty Army warehouse and I’m beginning to think that not every eagerly anticipated thing in life has to end in disappointment. For the first hour, Spielberg executes one bravura moment of popcorn cinema after another.

The second half…not so much. The story gets bogged down in its efforts to lead the audience through a breadcrumb trail. The CGI is glaringly obvious in parts and the science fiction elements are kludgy. This fourth chapter of the Indy franchise doesn’t sustain the same exhilarating pace of the original, but then again, I’m not eight years old anymore. Indy’s prime may be past, but the film didn’t rob him of his essential coolness. And now, Mr. Lucas, it’s time to leave well enough alone.