Charlie

by Virgil Soule. 0 Comments

Robert Saylor’s death continues to resonate with people in national and local organizations dedicated to helping people with Down’s syndrome. I sympathize with the aims of these groups because a nephew of mine, Charlie by name, was born with Down’s syndrome.

Readers will recall the incident in which a Down's-type fellow named Robert Saylor had a scuffle with security people in a movie theater and died as a result of it. Apparently, he had been left at the theater to see a favorite GI-Joe-type movie. When the movie was over, he wanted to see it again and refused to leave his seat (or, had been told to wait for someone to come get him). Theater management called for mall security and three off-duty sheriff's officers showed up. They wrestled the guy out of the seat and onto the floor, cuffed him, and physically carried him out of the theater. Somewhere in all that – nobody is quite sure – Mr. Saylor went into cardiac arrest and died.

The officers were absolved of any responsibility for Mr. Saylor’s death. They were just doing their job and were following accepted protocol for dealing with trouble-makers. The problem many have with the incident is the heavy-handed manner in which it was handled especially in view of Mr. Saylor’s apparent handicap.

In light of the Saylor incident, I asked my brother, Roger, how Charlie is doing. This is his response:

“Charlie is doing great. He lives at home with us. He could never live unsupervised. He is nonverbal, says a few things but not well enough that people who don't know him would understand. He knows some simplified sign language. He learned that in school as part of a plan to motivate him to learn to speak. He's never learned to speak as a result of that. Downies tend to have oversize tongues and lack the mouth coordination to speak plainly. If you speak to many of them, you'll notice they don't speak well.

“Their intelligence ranges from almost normal on down. Because of Charlie being unable to speak, it's hard to judge where he falls there. We tend to judge him higher, but we're not exactly unbiased. Hardly a day goes by in which we don't note how smart he is about some things. He understands us very well when we talk to him about what we're going to do. If we think he might get upset about anything, we talk to him ahead of time. If he has time to think something over, rather than be surprised by a break in our routine, he usually accepts things well.

“Routine is our bylaw here. To normal people routine can be stifling, but Charlie loves his routine. We do other things, visits to malls and restaurants, etc. and he enjoys them. But, we maintain a fairly rigid schedule. He goes to a sheltered day program. They pick him up at home and bring him home too. Some of the people there have work to do, but Charlie doesn't. He does things like going to museums, art galleries and such. They take him bowling maybe once a month. The bowling alley people must cringe when he goes out on the lane. He just does a sort of basketball pass to throw the ball. It goes BANG on the alley, and rolls down there to knock some pins over. There's a thing in the gutters to keep the ball in the alley. He has a good time at it though and as long as they don't refuse service at the bowling alley, we don't worry about it.

“Downies don't tend to have long lives. I think about 55 is normal life span. They do tend to have weak hearts, but that may be because they're not very active. Charlie's heart is normal and strong. I knew one, a girl who was maybe in her mid-forties when I met her, and a pretty sharp little lady – a bit of a yenta, but smarter than the average downie. When she got to about fifty, she went into a rather sharp decline. It was a classic case of Alzheimer’s. They moved her to a nursing care facility. I think she died not long afterwards. A year or two ago, I read about a Down's syndrome guy who was celebrating his 83rd birthday. Cases like that are rare, however.

“The incident of the guy in the theater was very unfortunate and could have been avoided if the theater manager could have used a little horse sense. Let him sit through the movie again. Would it have hurt anything? Remember the guy in Bismarck who everyone called Johnny Bang-bang? He loved the westerns and always hollered 'bang-bang!' when the movie shooting started. No one ever complained that I ever knew of.

“A few years ago, there was an incident at the Mall of America in which a mentally-handicapped guy was killed on a ride. It was on the flume. At the top of the ride, before they went down the flume, he got in a panic and got out of the ride thing. Then he fell down from the top of the rocks. That was another really unfortunate accident. If someone had used a little common sense it might not have happened.

“If you want to advise anyone, just tell them to treat Down's syndrome folks just as they would anyone else. Don't be alarmed if they behave oddly. They don't mean to be troublesome or to make trouble. They're just trying their hardest to be normal people and do normal things. If you meet one who is alone and seems to be having a problem, just talk to him just as you would anyone else. Introduce yourself and ask his name. Ask if he's having trouble and if he needs any help.

“Small children should be advised to not stare at them and not be scared of them. I say that as a parent. Charlie doesn't seem to notice if people are staring at him, but I do and it annoys me. I know, I should be a little less sensitive about that sort of thing. But, doggone it, you don't stare at someone. It's rude!

“When Charlie was first born, they recognized right away that he was a downie. When I heard it I went right to a college psychology textbook and read what it had to say. In that book it was advised to put the child in an institution and forget about him or her. I remember thinking "good lord! Marion will never agree to that." I was right, and I wouldn't have agreed to it either. But, that used to be the practice. I guess they thought the burden of a handicapped child was too hard on the family. Fortunately, no one believes that any more. And no one advised us to do that. Not long ago, there was a story about a man who discovered he had a sister in an institution. His mother and father never told him about her. What loss it was for him to not have the experience of knowing his sister through their childhood.”

Charlie has an older brother and a younger sister, both normal and thriving as adults. Charlie is now in his mid-forties. Given a history of longevity on both sides of our family, he could outlive both parents, but that, of course, is impossible to predict.

It’s interesting that family genes do show through in Charlie. My Dad had a curious grunting habit – a very mild Tourette’s tic perhaps. My Mother noticed Charlie doing the same thing.

Mom was impressed by Charlie’s abilities. On one occasion, she went with him and his parents to a family-night event at his school. Charlie led them first to his locker and then to the auditorium where the evening’s events were to be held. He functions well in familiar environments.

Medically-speaking, Down’s syndrome is a condition called trisomy-21 in which all or part of a third copy of chromosome 21 is inserted in the genome. It is a genetic accident that occurs fairly regularly – about 1 in every 767 pregnancies.

This regularity has given rise to a practice that is disturbing, indeed. According to the Wikipedia article, fully 90% of Down’s pregnancies are terminated. The decision is, of course, left to the parents of the unborn child. As a trend, however, it is disturbing because it could be construed as genocide against an undesirable segment of the human population. Precedents like this have the potential – or even a tendency – for misuse.

This is a little far out, but suppose we imagine an Orwellian scenario in which someone finds a “Republican” gene and sets out to eliminate it from the human population. Republicans and Democrats think differently. Republicans are inclined to be objective and practical in their approach to things. Democrats are more subjective, idealistic, and maybe even child-like. What if someone were to find a gene defining that difference and a future government mandated that all pregnancies displaying the “Republican” characteristic be terminated. In just a few generations you would have a populace that followed orders and never questioned authority.

Farfetched? Perhaps, but when you consider that China has a one-child law under which pregnancies after the first must be terminated, maybe not. People here are already looking to China for examples of the way a “progressive” society should be run.

That’s one reason to moderate our zeal to legalize abortion.

Trisomy-21: http://en.wikipedia.org/wiki/Down_Syndrome

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