Group 1 Tab
I grew up in a happy family in Fort Worth, Texas. I had polio when I was about two years old, and I faintly remember walking on my tiptoes a lot, wearing leg braces and my mother taking me to physical therapy. She didn't drive when I was young, so we walked to the therapist’s office, which was about six blocks from our home, and she often carried me since I had difficulty walking.
Before I was born, my mother had been a medical secretary, and while she might not have been overtly suspicious of doctors, she had a working knowledge of why it is often referred to as the “practice” of medicine. So she visited with the therapist ahead of time, and she felt confident in his ways.
I can't remember the therapist’s name (but he looked like the actor David Janssen from “The Fugitive” TV series). He was a nice and respectful man who always talked to me about me, and talked to my mother about everything else. Over time, he learned what I liked to do by just asking me. I had told him about the plastic wading pool we had that I liked to play in, about how much I liked playing outside and going barefoot, and about a huge sycamore tree—so tall that I couldn’t reach the limbs—that dominated our back yard.When the weather turned warm, he said, “Mark, I don't think you have to wear leg braces anymore and you don't need to keep coming here so much. A lot of the stretching and exercises we do here in the office you can do in other ways at home. I want you to go outside two or three times a day and walk barefoot around the side of your house. You’re growing pretty fast, and I bet you don’t use the wading pool much anymore. Instead, I want you to fill it up with sand, and go outside every day and spend some time walking around in the sandbox like you're on a journey through the desert.”
He went on. “You've told me before about your knowing your numbers and your ABCs. That's very good. That will be very helpful in September when you start school. I want you to spend some time sitting down in the sand and moving your feet and legs back and forth. Make a great big number 1 in the sand with this leg, and then make another great big 1 with the other leg. Then, I want you to move your feet from side to side and make a great big letter Z in the sand, with this foot and then with that foot. And then, stretch your legs out straight in front of you and spread your feet apart so that you make a great big V with both feet.”
This last part has stayed with me to this day. He said, “Have your father get a rope that’s about as tall as me, and tie some big knots in the rope about a foot apart. Have your dad tie the rope to the bottom limb of that sycamore tree in the yard. Start pulling yourself up that rope and climb up the limbs of the tree. Go all the way to the top, if your mom says that’s okay. Come back and see me in a few months and tell me what you can see from the top of the tree.” I have been fascinated by heights, the wind, flying, and flickering leaves ever since.
So, I spent a few months playing in the sand, going barefoot and climbing trees. Then I went to first grade.
1966 was a big year for me: I was Patrol Boy of the Month in both February and May, and I was on the sixth-grade 400-meter track team at the All-City Public School Relays. I had corrective surgery on one of my legs when I was 10, and again when I was 20. In between, I was the only one in my family watching television when Jack Ruby shot Lee Harvey Oswald, and when astronauts Armstrong and Aldrin stepped onto the moon.
But I didn’t see the final TV episode of “The Fugitive,” even though this program was watched by the most people in television history up to that time. I never watched the show at all, because my childhood brain couldn’t accept that a guy who looked like my therapist was accused of murder.
In my 12 years of public school and six years of college, I knew only a handful of people who had disabilities. Billy was a good friend all through elementary school. He had a cleft palate, but that didn't matter. Larry sat across from me in my third grade class. He stammered when our teacher, Mrs. Harwell, called on him, but he always had an answer to the question. And I knew a guy in 11th and 12th grades named Michael, who had had one arm amputated below the elbow. He absolutely excelled as a first baseman in PE class.
In junior high, I had an English teacher named Mr. Herring who had lost one of his arms to a war injury. He often drew pictures on the chalkboard using his other hand. The process was slow, but the drama of watching his pictures take shape always made his point. One lesson was about proper and improper use of commas. One of Mr. Herring’s illustrations was of a person shivering in the cold; it had the caption “I’m freezing, Dad.” Next to it he drew a child with a mischievous grin on his face, closing a refrigerator, with a grownup behind the door. That drawing had the caption, “I’m freezing Dad.”
I attended six universities over a period of years, and was lucky enough to discover a passion for radio and television production, which allowed me to get paid minimum wage for 60-70 hours per week—and it felt like fun, not work. It’s probably no coincidence that all those years ago when I was a kid, the most interesting thing I saw from the top of my sycamore tree was the blinking red light of a television transmitter tower.
Kathie was one of many bosses I had over the years, but she was the only one I married (in 1980 on the San Antonio Riverwalk). As former Monty Pythoner Eric Idle said, “I am well-wifed.”
I have resigned from four jobs, in order to go to better jobs; I have been laid off from three jobs, which always led to me getting a better job. I have been fired once; enough said. And once, someone really did keep my resume on file and called me more than a year later and hired me. That was for the Americans with Disabilities Act Information Center in the Rocky Mountain region, where I worked for over five terrific years.
It was my job to learn the federal ADA regulations and train people all over the country on accessibility, civil rights, and reasonable accommodations. I talked with many people every day about various disability situations and researched how the ADA applied or didn’t apply to the situation. With great irony, the one thing I came to know for sure was that almost all disagreement centered on the each person’s definition of the word “reasonable.”
Have you ever tried to describe what water tastes like? That’s also how to describe what I do today in our BraveHeart Press/Disability is Natural small home business. Every day, I learn from lots of nice customers on the telephone. I make things. I ship things. I lift heavy things. I edit what Kathie writes and I sometimes shoot video or photos that Benjamin needs for a project. My coworkers are my family (literally). At the end of each day I feel nourished and I sleep well.
In addition to my family, music and movies make me tick. I still get a kick when watching Day of the Jackal or Shawshank Redemption or Sixteen Candles or endlessly encouraging anyone in the room to, “Watch what happens in this part!” I get equal enjoyment from hearing Gershwin's “Rhapsody in Blue,” the Who’s “Won't Get Fooled Again,” the Dixie Chicks’ “Sin Wagon,” and Rockapella’s “Where in the World is Carmen Sandiego?” I still get guidance and motivation from songs, such as the Dire Straits’ lyrics, “Sometimes you're the windshield, sometimes you're the bug.” I must confess to finding numerous and significant deeper meanings to that advisory, in virtually every aspect of my life.
Our two children, Emily and Benjamin, are not little anymore. But we continue to learn from them everyday. As the father of a child with a disability, my life has been filled to the gills with joy, discovery, wonder, anticipation and peace—very similar to the genuine, gut-level, finally-being-honest-with-yourself feelings you experience when you find Your Mate and the two of you begin to build a life together. These are also the same feelings experienced when raising a child who does not have a disability.
And being the father of a child with a disability has also filled my life with questions, worry, uncertainty, insecurity and pain—very similar to the genuine, gut-level, finally-being-honest-with-yourself feelings you experience when you find Your Mate and the two of you begin to build a life together. These are also the same feelings experienced when raising a child who does not have a disability.
Looking through this web site, I hope you’ll find whatever is necessary to provide the child or adult with a developmental disability in your life with the tools, spirit, and awareness of a future that e.e. cummings described in 1955:
To be nobody but yourself in a world which is doing its best,
To me, this can lead to you becoming a winner, but that doesn’t mean someone else has to be a loser.
Oh, and the building where I went to therapy is still there. After many renovations, it is now a computer repair shop.
©2009-13 Mark Snow, www.disabilityisnatural.com