I received an epistle from a Down Syndrome Association a few days ago delineating how they would like for the press to refer to Sarah Palin’s son, Trig, who has Down Syndrome. I have a Masters Degree in Social Work, and reading all the rules they handed down made my head swim.
I had heard some of them already. When Walker was born, I was told he was Mongoloid. That word kind of made sense to me, although it has fallen into disfavor. The suffix –oid usually means “similar to”. People with Down Sydrome, regardless of their cultural origin, do appear to have facial features somewhat similar those of Asian, perhaps Mongol, descent. (I hope I’m using the right word there.)
Early on, I was told that the name of the genetic defect was Down’s Syndrome. It was named for Langdon Down, the physician who first identified a cluster of characteristics that children born with an extra copy of the twenty first chromosome seem to have in common. Somebody decided that since Down himself didn’t have the genetic defect that the ‘s should be dropped. Like most changes, I’m having trouble adjusting to it, but that one’s not too ridiculous.
The ones that bother me most are the ones that require using many words to say what one used to suffice for. Now, I'll admit that most everyone I know objects to the insulting name beginning with R that has become common in popular society. But, do I as a parent really care whether you refer to Walker as a Down’s Kid or a Kid with Down Syndrome, or a Person With Down Syndrome. Absolutely not. Does he? You gotta be joking. The same goes for Mentally Retarded versus a Person With Mental Disability. (Actually I can’t quite remember what the powers that be preferred for that one, and it’s not worth looking it up right now.)
Walker doesn’t like it that he has Down Syndrome because he knows it makes him look and act different from most of the people around him. I think he suspects that it may be the reason he hasn't had a girlfriend in years. He has seen two classmates die prematurely because they had Down Syndrome. He knows it’s a much bigger deal than what you call him. Just call him Walker. Call him friend. Call him beloved son, brother, uncle, nephew, grandchild, neighbor, co-worker.
What I really wish is that some of the time and money wasted on renaming stuff would be put into remediating the things that can be remediated for children with all disabilities. Give them all the kind of education that we were able to afford for Walker. Give them more time in school as long as they’re progressing, because they continue learning for a lifetime. Give them good dental and medical care and speech therapy and occupational therapy, because they can function in the greater society if they’re healthy and well educated and trained in grooming and hygiene.
I’m truly grateful for all the people who made Walker what he is today. A blessing.