Sunday, July 8, 2007

"Tinkering With Humans": NY Times book review of the Case Against Perfection

Over my coffee this morning, I read the review of the Case Against Perfection on the subject of genetic engineering. Its author questions the "old fashioned" view that genetic engineering and aiming toward a "perfect" society would rob us of our dignity and humanity.

I profoundly disagree and I have a few thoughts on the matter from where I sit as a disabled woman. Let me start by explaining that I believe the idea that our society has developed that perfection should be a goal comes from a fear of our own humanity and its unpredictability - the very glory of our existence which sadly is losing its value in the mainstream view.

Yesterday I scootered over to an outdoor concert in a public park. There were college students on their bikes watching, families on picnic blankets, seniors, and tourists.

I was the only gimp in sight - at least the only one with a visible disability. Now mind you, I've spent weeks getting mobilized after shoulder injuries, so it's just happenstance that I got my disabled body there at all, which does make me wonder how many more people with disabilities don't have the means to get to an event like this. I suppose if I did the math in my head knowing who lives in the area, I can think of at least half a dozen people I know of within a one mile area-2 blind friends, 4 in wheelchairs. In a three mile area I know of at least thirty. None of them had the transportation to get there.

Everyone was very friendly and I had a wonderful time but I found myself thinking this morning about how such scenes present a false sense of "perfection" which really does rob our society of seeing the whole picture. I know some reading this will question what I'm saying because they see disability as a negative and feel its eradication would be a worthwhile goal because it "eliminates suffering". But those are untrue words. Because being disabled has been equated with suffering, some people equate suffering with being disabled and mix up the whole thing in their heads.

I enjoyed that concert as much as anyone else there - because I was able to get there. What causes the suffering from disability is the lack of resources that lead to isolation. It's not the disability itself. Most people with disabilities who I've met are full of joy and life. I know we've all met able bodied people who are not that way and I warrant you that tinkering with humans and eliminating disability won't fix that.

The dignity of each human being as we're created is something I believe in as a Catholic. As a person with a disability, I can bear witness to you that the fears that feed eugenics and genetic engineering as a "fix-all" of the human race are misfounded.

By denying segments of our society the resources they need to function we have already "selectively eliminated" from participation those who are visible in our society. Let's not compound this by cutting their existence off at birth.


Anonymous said...

Why don't you buy a van and take them over? Leave the rest of us alone.

I think it would be great to eliminate disability. It costs us money as a taxpayer I want nothing at all to do with including them in our society. I don't want to look at it. I'm not paying to get anyone anywhere.

So get a tin cup raise some money and fix the problems. Find some bleeding hearts. I'm not one of them.

Angry Taxpayer

goldchair said...

Sadly this comment makes Ruth's point.

Denying people the resources they need, an increasingly popular trend, results in situations such as the one she just posted about - a mom who is facing cut off of her life support. You go buy yourself a tin cup btw. how dare you.

Anonymous said...

I apologize for the tin cup comment. I didn't realize that people who need things to breath were being denied help. That goes too far and I don't want my comment to reflect that ok? But it's diferent since that woman got disabled later than being born that way. WHen it can be prevented I just don't believe in letting disability happen.

Karen Marie said...

Not letting disability happen is one thing --- that's why we enrich pastas with folic acid, test expectant mothers for various forms of STDs, screen newborns for PKU and a couple dozen other metabolic problems, immunize for polio, measles, rubella, and etc., and put kids in carseats

Killing disabled people, before birth or after, is entirely different and totally unacceptable.

betterolls said...

Killing their spirits is unacceptable too by denying them what they need.

Aaron Marks said...

Wow, there are some really interesting comments here. Eugenics is such a touchy topic. I wish that people with disabilities, of all sorts, were better able to get out and represent in the populace. But then would we still call it a disability if they weren't hindered?

hotwheelz said...

It's a lot easier for folks to disclaim any responsibility if they pretend they don't understand. Reminds me of when I shopped for a handicap van and I couldn't afford one. The sales guy said Gee I wish I could give you a break but I got to get that price because that's what I bought it for. This is a handicap van and we don't negotiate prices. I'm not making a profit on that price. So I find out later that he bought that van for 5 grand less from someone I knew than the price I was trying to get it at. Even if he put money into it, hard to see how he was losing in that deal.

Negotiate when you buy this stuff folks. Salesmen are salesmen whatever they're selling and they know how to talk pretty.

And what do I drive? A regular car because I never could find one I can afford. I manage. They got their profit.

guidedog43 said...

I can walk and take buses but transportation is a real problem for me. I miss out on events unless a friend is going because there isn't mass transit going there. Why should I accept that having a disability means my life is going to be limited? Why should we allow people to say that to us? I worked hard to be independent as I can be but I sit around because of no transportation. We need to speak up no matter what our disability is.