No easy choices when your child is disabled
The City Paper published a thoughtful article on genetic counseling ["Pregnant Questions," Nov. 26] that mentioned parents, learning that they are expecting a disabled child, who worry about quality of life issues. "Some parents," the article said, "worry that their child won't attend his own prom."
"Ah!" say the City Paper's readers. "How foolish those parents are." "I didn't attend my own prom." "I didn't enjoy my prom." "I don't remember my prom." "Proms are stupid."
Proms are very stupid. But there is more to the quality of life than a high school formal dance.
The Americans with Disabilities Act says that disabled children are entitled to a good education. That act opened a huge can of worms.
The school board's idea of a good special-education program doesn't always agree with what parents believe their child needs. Getting your child an appropriate education may mean hiring lawyers, fighting the school system, or finding a way to afford private school.
The PTA isn't going to be your friend. Parents with normal kids feel resentful, believing their children are being deprived of opportunities, because of mandated special-education programs. They've read the article in Reader's Digest about parents who coach their children to fake disabilities, so they can get Social Security. They've read the article in Time that explained that special-education funds would be better spent educating the gifted and talented.
"Let the kids in special ed stay home," a friend of mine said, looking at her property tax bill. "They aren't learning anything."
The lady who said that is a progressive. But she owns a house in Squirrel Hill, and it's getting expensive to live there.
Not, of course, because of special-education programs, but because Squirrel Hill is a nice, safe, walkable neighborhood, convenient to two universities and most of the city's hospitals. A house that would set you back $70,000 in Stanton Heights will cost three times that in Squirrel Hill.
Americans resent taxes. Childless homeowners resent school taxes.
Getting a child with special needs through school is going to be a long, hard fight. One of the people it will be hardest on is the child: Bullying is pretty much a given for disabled children. Kids are mean. They think it's fun to trip a boy who can't walk, or take things from a girl who can't see.
Parents and teachers sometimes blame the victim. "Of course the other kids pick on him. He doesn't belong here. He belongs in a school with his own kind."
Friends are scarce for a disabled child. If you can't shoot a basketball, or ride a bike, or play the latest video game, other kids don't want you around. If a disabled child tries to fit in, they're at risk for ugly pranks, like the retarded girl who was sodomized by a group of high school athletes.
Then comes the big question any parent of a disabled child must ask: How will my child live after I am gone? Will she be able to support herself? Will she live in a safe place? Will good people take care of him?
There are group homes for adults who can't live on their own. Some of them are good. Some aren't. It will depend on where you live, who you know, how much money your family has, and how much effort they are willing to put into providing you with a good life.
There is a lot more to quality of life than going to the prom.
There's holding down a job, living in a good place, having friends, having a family of your own. Then there are all the important intangibles: respect, pride, dignity, independence.
It's harder for disabled people to achieve those goals. For some, it's impossible. Which is why some parents decide to abort a child who would have been born with a disability.
They are saving themselves and their child a world of heartbreak. They shouldn't be stigmatized as shallow or selfish, or cowardly. They made a hard decision. But they were doing what they thought best for their child.
-- Jean Martin, Swissvale