reflections related to disability advocacy, family and (needed) cultural change
Friday, November 21, 2008
Guest Blogger: Author, Gary Presley
Today we have a guest post from fellow blogger (bloggist?) Gary Presley. He has published a memoir, Seven Wheelchairs: Life Beyond Polio about his experiences with disability and has been so kind as to share some thoughts with us about writing and about disability--enjoy!
Let's face it. You need to polish your ego a bit if you want to write a memoir. Frankly, I didn't have much of one. I was raised as an Army brat, which means the "children seen but not heard" school of thought. Oh, of course, a child was "heard" occasionally, but it was to say "Yes, sir" or "Yes, ma'am."
But I do have a bit of ego. In fact, I sometimes display an off-beat, twisted sense of pride that I'm one of the few people you'll ever meet who has used a wheelchair for nearly 50 years. Of course, that didn't come easy. For too long, I was something of a jerk – and an angry, bitter one at that. With that mindset, it took me several years after I begin to write before I understood that there was a story worth telling about that long, seat-of-the-pants journey.
It began when I wrote an essay entitled "A Pot to Pee in," a whimsical meditation on what it means to use that little plastic bottle called a urinal. I thought it was interesting enough, especially because it begin in the bad old days before there were accessible bathrooms.
I belong to a writer's critique group, and several members read the essay and said "You need to write a book."
And so I did. I thought maybe I could offer the world an opinion or two about what we call "disability" – about it being simply another aspect of the human condition, about the need to integrate people with disabilities fully into society, about the ugliness of institutional care, and about the absurdity of the so-called right-to-die movement.
The book – called Seven Wheelchairs: A Life beyond Polio – was a multi-year project, but it was published October 2008 by The University of Iowa Press. Many readers have responded with notes that they've begun to regard disability differently because of my book.
Now here's the odd part of this saga: In writing the book, I taught myself something too – about myself and about disability.
I learned – no, really remembered and understood – how significant a sacrifice my parents made for me after I begin to live on wheels. I learned how deeply held the guilt I feel about that – not guilt imposed by my parents but rather guilt generated by my dependence. No one ever told me what every parent should tell a child with a disability: there is no blame related to disability. Disability simply "Is" – and it is only one of the qualities that makes the child a person of value, a person worth loving, a person of promise.
And what did I learn about disability? Mostly that things are better now than in the bad old days when I became a polio quad. Better access to education and employment are the two most important. On the other hand, there's one element in the "living disabled" lifestyle that still restricts full integration. That's social integration – the idea that many of us with mobility impairments and other physical and mental conditions remain isolated. Barrier-free home construction would go a long way toward fixing that problem – as would a concerted effort by people with disabilities, and their supporters, to never hesitate to move proudly and confidently out into every community activity possible.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.