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Wednesday, May 09, 2007

Preserving disabilities for the sake of diversity?

Should more parents be able to avoid having a child with disabilities? Such is the dilemma raised by new testing technology and recommendations from the American College of Obstetricians and Gynecologists. The doctors are recommending that all pregnant women have their fetuses tested for Down Syndrome, a disability affecting 350,000 Americans.

Parents of children with Down Syndrome say that we shouldn't be too hasty in choosing to avoid having any children with Down's. Raising issues from funding for research on the disability to school access to presence of other similar children, the parents are organizing to help parents whose fetus has a Down Syndrome diagnosis to consider the options.

At the same time, Down syndrome is not a cakewalk for parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
On the one hand there's the ethical question of parent's choosing features of their children (e.g. the presence of disabilities, perhaps the gender, etc...). On the other hand, having a child with this disability means a lot of extra care and work. And what about the child? No matter the quality of the parenting, the child will still have to face the social stigma of their condition, the being "different."

I was left with two thoughts:
1) As the article notes, some of these parents are rather selfishly desiring their child to grow up in a supportive environment. More kids with Down syndrome means more support. That's crap.
2) In a recent conversation with the vet about our outdoor cat, he noted that Leo was likely to have a shorter lifespan than an indoor cat (I'm sure he's expended several of his 9 lives already). However, he also said that it may be a much happier life for him (and any cat) than being confined to a single house for a lifetime. Are the the lives of my cat and my children simply subject to my personal preferences?

4 comments:

HeroicLife said...

Choosing to have a child with severe mental and physical problems is a moral atrocity. There's no way to get around the fact that Down syndrome causes suffering in everyone involved, especially the child. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children's suffering to everyone else. They should be named for what they are - evil.

Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want children to suffer their entire life? Only the religious dogma behind the hypocritical "culture of life" is capable of sinking people to this level.

crystalghetto said...

This is a very thought provoking post. My concern is the quote used. 5,500 children born with the syndrome each year sounds unreasonably low. Average life expectancy for someone with Down syndrome is currently at 49yrs; double what it was 15 years ago (MMWR Weekly January 6, 2006 / 54(51&52);1301-1305.) Either the numbers don't add up or there are even more people with Down Syndrome that are not yet "discovered". In looking at the limitations in the study abstract mentions it does not differentiate between mild and severe cases in their findings. I'm willing to bet many mild cases have not been diagnosed and many other cases are discovered even up to 2-3 years after birth.

I tend to disagree with the comment by heroiclife. While you may be able to test for this type of syndrome you can't immediately determine what that person's (or non-person's as you see it) quality of life will be. It may be a mild case of Down Syndrome that doesn't contain all of the harsh side effects heroiclife assumes. Playing this role as a parent puts you in one of two roles: God or our current Republican president who likes to play God with American lives and resources.

jff said...

Choosing to have a child with severe mental and physical problems is a moral atrocity. There's no way to get around the fact that Down syndrome causes suffering in everyone involved, especially the child.

The testimony of these parents, while sometimes self-serving, suggests that a child with Down syndrome is not causing suffering in everyone involved. Therefore, it may be a little far to describe these well-meaning folks as "evil."

jff said...

5,500 children born with the syndrome each year sounds unreasonably low. Average life expectancy for someone with Down syndrome is currently at 49yrs

I'm not sure how life expectancy affects the number of kids born with Down syndrome, but I do agree that it matters how you measure it.

While you may be able to test for this type of syndrome you can't immediately determine what that person's (or non-person's as you see it) quality of life will be.

It's an excellent point. Not all Down syndrome cases are the same. I wonder if the tests being use are binary (yes/no) or if they can give the parent a sense of the severity of the affliction.