My friend and colleague John Tschida had an op-ed piece appear in yesterday’s Strib expounding on the the oft-repeated maxim from Disability Advocacy 101: living with a disability is not an inherently tragic experience.  What I like most about John’s piece is his unflinching honesty in recognizing the difficulties and frustrations in learning to exist with a disability.  He also doesn’t condemn those individuals who choose not to pursue such an existence and have critical life supports withdrawn. 

I’m still not sure most people really get it when I explain that my quality of life is pretty good.  I sometimes think it’s like trying to describe the flavor of some exotic dish; you can say it tastes like chicken, but that doesn’t really give the other person a clear idea of what you’re describing unless they experience it themselves. 

Blogging may be light over the next couple days because my brother will be dropping by.  I haven’t seen him since I was in Berlin last year and we’re going to do a little catching up before he goes off to California and his ivory tower. 

Happy fortieth anniversary to Star Trek.  Sure, it’s featured bad acting, cheap special effects, hackneyed scripts, and the franchise barely survived Rick Berman’s disastrous creative tenure.  But then there are episodes like City on the Edge of Forever and The Inner Light; storytelling gems that kindled my lifelong love affair with science fiction.  When I my brother and I were kids, we actually attended a summer class at the local university where we watched episodes of the original series and discussed their themes and plot devices.  We even got a write-up in the local paper.  Somewhere in the archives of the Green Bay Press-Gazette, there’s a picture of a rather geeky-looking me sitting with a bunch of other geeky-looking adolescents.  This was soon after I was trached and I was still working through some feelings of resentment about being on a ventilator.  But I always looked forward to that class and I think Trek’s implication that the future might be kind of cool resonated with me at the time.

Thanks, Star Trek, for helping me realize that it was okay to let my geek flag fly.

I frequently find myself countering other people’s notions that I live in constant pain.  It comes as a surprise to many that my atypical body can experience physical pleasure and comfort.  Here are five things that make me feel good:

• Stretching my hamstrings: When I was a kid, I would make my parents stretch my legs back until they touched my nose.  I’m not quite that flexible now, but I still like the burn I get in my legs when I flex them
• Getting my scalp scratched: I purr like a cat when this is done to me.
• Sex: No surprise there.
• Hot showers: I used to be afraid of water when I was first trached because I was afraid it would somehow enter my airway, but now I can’t start my day without a shower.
• Sleeping on my side: I can’t fall asleep unless I’m on my left side.  It’s also the position that gives me my best dreams. 

Over at Minnesota Monitor, Jeff has posted a concise Labor Day survey of the current election landscape in our great state.  His prognostications mostly jibe with mine; Pawlenty and Klobuchar should win handily, while the DFL should pick up at least one Congressional seat.  Read Jeff’s analysis and prepare yourself for the onslaught of belligerent campaign advertising.  Though the political winds should favor Democrats, Republicans won’t go down quietly. 

We also say goodbye to summer today, at least in spirit if not in name.  Time to put my whites away, dig out the flannel, and start dreaming about next summer. 

I received this in my inbox earlier today and I thought it might be relevant to some of my readers:

Hi, my name is Adriana and I am conducting research for a program on the elimination of bias against persons with disabilities. The programwill serve as continuing legal educations for California attorneys.  As assistant to an ethics lawyer, I am eager to plant some seeds that will help bust misconceptions such as the binary between the “able-bodied” and the “disabled”. The program will cover basics, such as ADA compliance and how to improve internet accessibility through website design. However, I hope to substantially strengthen and humanize the program with the voices of diverse persons with disabilities who might share their experiences in accessing legal services. Please share your experiences with me and help guide the direction of this program. I want it to raise awareness of the rights and experiences of persons with disabilities to a new audience in order to provide one more avenue where voices can be amplified with integrity, unlike the many media outlets that cut and contort statements to fit their storylines. If you have a story on this topic to share, or have any questions about the program or this request, please contact me! My email is dosmanos@gmail.com.

This sounds a lot like the CLE I co-teach every year at Gillette Children’s Hospital.  Maybe I should just send Adriana my PowerPoint slides.