Birthdays (part 2)

Growing up Disabled.

To continue with last week's post, at the tender age of six I was unexpectedly thrust into a totally alien world. Yes, I started first grade.

Now, school is a traumatic event for any child. New environment, new rules, surrounded by strangers, and no loving parent there to act as a buffer between us and the cold hard reality of life. I wasn't just disturbed... I was terrified. I was not alone, however. I was in the company, sad as it was, of twenty-odd other children who did share at least two things in common with me. We were all disabled, and we were all terrified. I think I may have thrown up on somebody. My belated apologies if it was you and you happen to be reading this.

Mainstreaming had not yet come of age, as it were. This was all still new, remember? A social experiment. So instead of thrusting us into classes filled with "normals" we were grouped into two classrooms, divided by "grade" -- a relative decision based not on our ages, but on our scholastic aptitudes -- and then the noble experiment began.

At first it was fairly easy going. We drew a lot. We painted a lot. We played with clay. They tried to teach our disabled limbs to make the fine controlled movements involved with learning to write. We also learned to read. Some of us needed speech therapy. All of us needed physical therapy. Against the odds, we made slow but somewhat steady progress.

Still, there was no blending between us and those children who ran by us in the playground, stopping only occasionally to stare, and perhaps wonder. Patience, the social scientists were no doubt advising. We need more data.

At about age ten the psychological testing began. One by one we were herded off to private rooms where we spent an hour a day in the company of a woman who smiled a lot, and asked us seemingly pointless questions while we were kept occupied with toys. As an adult, I've seen this process from both sides of the table, and I can't help but wonder if my answers to those questions were the "right" ones. Knowing me, I'm sure I amused her. I was a very imaginative child.

The rest you can imagine. After sixth grade some of us "graduated" and some of us didn't. I was one of the lucky ones I suppose... I ended up in seventh grade, in a new school, filled with kids my own age who had probably never seen a handicapped child in their entire lives. I'll also leave you to imagine what those kids did in the absence of the complementary social engineering that would have come with proper "mainstreaming." Let's just say that I (and they) were totally unprepared for it, and leave it at that.

Of course, times have changed now, at least superficially, and for that I'm glad. We don't hide our disabled children away anymore. They go to school right along with their able-bodied counterparts. There are kids in wheelchairs on television now. Popular kids. Good role models for all of us.

It's been a long road, and we're getting there, but we're not all the way home yet. As I said in the first part of this series, my life hasn't always been fair, but it's been educational. I know that everything I went through as a child was worth it, and for that, I'm very glad indeed.

Birthdays...

... and other signposts along the road.

Today marks my 55th year of life on this planet. It has not always been fun, or even fair, but it has been interesting, and educational.

Fifty-five years ago, almost at this very minute, I drew my first breath. That breath did not come easily, however, or without a price. You see, in 1954 rural America we did not have such modern tools like sonograms to warn us when our babies had somehow managed to entangle themselves within their own umbilical cords. In my case, that near catastrophe didn't become apparent until I made my appearance... blue, shriveled and lifeless.

Lucky for me, my mother's doctor was one of those exceptional breed who takes his daily battle against death perhaps a bit too seriously. According to her account, he worked on me for over thirty minutes, applying every technique and device at his disposal to restart my heart and lungs. Finally, when lesser men might have given up, he finally succeeded. I was alive, and breathing on my own.

We wouldn't find out until two years later that the lack of oxygen during that thirty minutes had damaged my brain. I had cerebral palsy.

What the doctors told my mother next was not the kind of news any mother wants to hear. My prognosis was not good. I would never walk. Perhaps I would never even learn to talk. I might not even live long enough to see my seventh birthday. Predictions based on averages, they quickly added. Perhaps I would beat the odds. Kind souls, offering hope.

My mother chose to cling to hope, as any mother will.

Then two things happened that would make liars out of anyone who had predicted those dire consequences for me. The first was a seemingly random encounter that led my mother to Shriner's Hospital for Children in St. Louis, Missouri. I was seen, evaluated, and then promised the best of care that money and technology could provide, free of cost to us. After a series of operations spanning fourteen years, I could walk, albeit with the aid of crutches, but I could walk.

I also, obviously, did live to see my seventh birthday. Happy birthday to me!

The second "miracle" involved a new social experiment which would one day come to be known as "mainstreaming" -- i.e. placing disabled kids among otherwise "normal" kids instead of teaching them as separate groups, as had been the norm before. Our local public school (Park elementary) was selected for one of these early pilot programs, and I (along with about 20 others) were selected as "test subjects." At age 6 I started school for the first time.

[To be continued next week. - Lawrence]