@ BrigidsDaughter ... thanks for your explanation, that does help me understand better.
@ seakinganswers ... heh, you know one interesting thing is that an extra finger is actually a "superability," if there can be such a word. As a pianist I've often wished I had a sixth finger on each hand, and I have to suppose it'd come in "handy" on a computer keyboard as well!
Re: correcting the gene pool, so to speak ... is likely to happen after technology advances so far that parents can "custom order" their kids (before the kids are even conceived). Go ahead and shudder, but human curiosity has proven to be unstoppable and I am certain that people will eventually have that option.
@ bofish ... thank you for referring me to the McBryde article. I have read it and admit I don't have any easy answers. It is an excellent article. I would like to take some time to digest it and mull over the issues it raises. I'll probably have more to say about it in some future post. It's interesting enough that I'd like to email it to "the old Utah gang," and see what they might have to say about it.
I think the most challenging/troubling issue the article raises for me is this. A guy is standing on top of a tall building, and he is about to jump. Naturally we are afraid for him. We get the police on the scene. A guy who specializes in this sort of thing goes up there and tries to talk him down. "Don't kill yourself," he urges the man. "You have too much to live for. People need you."
However, if someone is suffering in some way because of some disease, and they ask Dr. Kevorkian for an assisted suicide, a relatively progressive person such as myself does not advocate "talking them down." I don't advocate telling them, "Don't kill yourself. You have too much to live for. People need you." Instead, I advocate respecting their wishes, even if that means ending their life.
Why, then, do I not also respect the wishes of the man who's about to jump off the tall building? Shouldn't I give him a push instead (in case he's hesitating only because he's afraid of heights)?
Re (from
bofish, earlier):
"Here is an article about a family who decided to have a disabled baby on purpose."
If I understand right, it's two deaf women who want to raise a (second) deaf child. Seems like the simplest way to go about that would be to adopt an (already-born) child who was (already) deaf. If that's what the plan is, then it seems obvious that it's a good idea.
I don't suppose there's a link to the original article? This particular piece is a Q&A session and it was frustrating to have to guess at the original facts of the case.
It must be an adoption. What else could it be? I don't think the technology (already) exists to select the gene for deafness in a future child. I suppose one of the women could get pregnant via a deaf sperm donor though that wouldn't guarantee a deaf child. Surely the woman wouldn't then abort if she found out her offspring wasn't going to be deaf?
Or is that your question? whether it would be equally moral to an abort a (to-be) child because they
*weren't* disabled?
Re:
"Say we got rid of Downs ... okay, how would we then secure the funding for people alive now with Downs?"
That seems like a rhetorical question to me, but I would hope that "we" (some future generation of we) wouldn't decide to "get rid of" Downs unless we had already first established that those persons already living with Downs would continue to be subsidized until the end of their natural lifespan.
Re:
"The problem is that people with this type of thinking are the same people who say, 'I'd rather be dead than be like you, or have a child like you.' Where does that put me?"
Well first of all, consider the source. If someone has a bad attitude towards you because of your disability, then the failing is theirs, not yours. You certainly deserve to live, and you do have much value as a person as well. I'm sure you don't need me to inform you of that, as you've already had to learn it on your own the hard way over the years.
I see two large issues at work here, and they are tangled together. One is an attitude of, "That person is disabled, how disgusting, it'd be better if they were dead," versus, "That person's life must be hard, I feel for them, I wonder if there's any way I can help." That's the first issue. The second issue is a disabled person saying, "I am a person who happens to have autism," versus another disabled person saying, "I am an autistic person." Notice the subtle difference. The one disabled person feels that they
*have* a condition. The other disabled person feels that the condition is a
*part* of who they are. It is what makes them who they are. Taking away the condition would take away a part of their sacred identity. And to speak negatively of the condition is to speak negatively of them, themselves, as a person.
If, for example, one person informs another person that, "I am deaf," and then the other person replies, "Ohhh -- I'm so sorry." The person who is deaf might then feel offended because the other person seems to be saying, "Ohhh, I'm so sorry that you are who you are. It must be terrible to be you." Sort of like telling Hitler, "Ohhh, I'm so sorry that you're Hitler. I would hate to be you." But, we don't know that the other person means it like that. Perhaps all they're saying is that, "It's got to be challenging to be deaf in a world such as ours that isn't very accomodating towards deaf people. I feel sympathetic toward you about the challenges you must face, and I respect you for facing them bravely." Perhaps they meant to say that -- and yet, they didn't put it very well. So you see, this is how I see the two issues described in the above paragraph getting entangled with each other.
It's terrible when people have a personal attitude problem towards a disabled person, but I think it's more common for people to be afraid of disabilities. I remember when (as a teen) I went to work at a nursing home for retarded men. It had a small fenced area out front where some of the men could go and greet people passing by. I was just going to the office building (of the two-building complex) and I remember feeling scared of those men. They seemed so strange and alien to me. Would they hit me? I was glad there was a fence between me and them.
Of course this was an emotional reaction on my part and I knew it wasn't rational. Just as I know it's not rational to be afraid when climbing to the top of a roller-coaster ride. We fear the unknown.
Now once I started working at that nursing home, it didn't take long at all for that fear to go away. I soon got to know each of the men as a unique individual, each with his own unique personality. When I passed that little fenced area where the men were greeting me, I happily and comfortably greeted them in return -- not as patients but as my honest-to-gods friends. One time I took one of the guys out with me on a road trip into the mountains -- just to hang out with the guy. I liked him a lot, felt for him, and wanted to be his friend. He was a sweet man. He had many fears and sufferings, which made me feel bad. But he was very affectionate. And here he was, one of those "strange alien men" who had scared me in the very beginning when he walked outside to greet me.
Another example: in National Geographic's film "Those Wonderful Dogs," they showed a man who was confined to a wheelchair and had a dog to assist him in various tasks -- fetching things for him and whatnot. It was rather moving to witness the devotion of both dog and man as the two learned to work together and became quite inseparable. The film ends with the man lying in his bed. The dog turns off the light for him, and then hops on the bed to join him, becoming his companion as well as his helper. But perhaps the most interesting part of the story was when they showed how the dog was a social helper as well. When people approach a guy in a wheelchair, perhaps they feel uncomfortable and don't know what to say. But when that guy has a dog with him, the "abled" people quickly warm up to the dog, and through that warming-up process, they also start to warm up to the guy in the wheelchair. The dog has actually served a role as an icebreaker.
I know that there is an invisible barrier between "abled" and "disabled" people -- even when both sets of people have the best of intentions. I think we have to look for little ways to melt those barriers away. When you get to know someone as a friend, when trust develops, you no longer worry so much about fears and misunderstandings.
Back to the complex reality of this thread. We have added abortion (and genetic) issues to the already-complicated issue of how people cope with disabilities, and with disabled people. Then we have added the heated nature that so many internet discussions have. There are probably limits to how much closure we can get on this topic, in this setting. It will have to suffice that it serves as food for thought. I have become aware of quite a few things, through reading this thread, already, that I wasn't aware of before.
