Common sense dictates that if we can rid the world of genetic abnormalities, meaning that people are no longer born ‘disabled’ (a catch-all term, I know, but bear with me, I mean any ‘disability’ including cystic fibrosis etc), then the world will be a better place. Surely no one would object to people working now so that, in 50 or 100 years there are no genetic defects.
However, if someone was born disabled in some way, in the here and now it seems to devalue or invalidate their life, e.g. ‘we are working to rid the world of people like you’ ergo ‘the world would be a better place without you’.
Is there a flaw in this logic? Is it possible to work towards this goal at some time in the future, without invalidating in any way the happy lives that disabled people are living at the moment? The guy on the radio started talking about Nazi eugenics. I don’t think it is, but is it a difference of degree or a difference of kind?
A related point: a deaf couple having IVF choose an embryo that will mean that their child will be deaf also. Isn’t this wrong? Sure, I can understand the point of view that says that they will be able to relate better to a deaf child than a hearing one, but surely no one would argue that the normal, and preferred, state is one of being able to hear. I think people should not be allowed to give their children disabilities in this way. (This is a genuine story, albeit from some time ago. I’m looking for the cite and will post it as soon as I find it).
I return to my earlier point, common sense dictates that if we can rid the world of chromosomal abnormalities, meaning that people are no longer born disabled the world will be a better place. If people now don’t like that aim, they should have to live with it, because people that aren’t born disabled in 100 years will thank us for it.
If I could snap my fingers and assure the world that no baby will ever be born with spina bifida again … I would… And if they found a sure fire way to prevent it tomorrow, I would rejoice. It would definitely cause a great deal less suffering for people world wide. I sincerely hope that happens.
Now tell me again how that means my daughter’s life is invalid.
Yes, there is a flaw in your logic. There is no logic I can see in linking the two concepts. I’ve never heard of anyone which an inherited physical problem suggest that research be STOPPED so their life will be “validated”.
On the other hand:
I too have heard the story about the deaf couple choosing to have a deaf child. I have also heard that some portion of the deaf community protested an experimental surgery to restore hearing to a deaf person, though I can’t remember the specifics or their rationale.
I’m sure I’ll get some flak for saying this, but IMHO those people are NUTS.
I’m not saying that anyone’s life is invalidated, but there are people that do link the ideas: disability is something we’d be better off without, but some people take what this implaies about their disability as a personal affront.
Here is your flaw. We are not working to “rid the world” of people like my daughter, just for example, we are working so that nobody else has to go through what she has.
The world would not be a better place without her. It would, however, be a great if her birth defect never occurs to any one else in the future.
Working toward helping people in the future says nothing about the value of the people who couldn’t have been helped in the past.
I’m not sure if you’re making the argument, or you’re presenting it as something “some people” think, but the quote above is a gigantic leap of logic if you ask me.
I feel that that group of people would be an overwhelming minority. I can assure you that my daughter would much rather be able to run and jump into my arms rather than to have to have me pick her up.
I think the painful truth is that the choice offered is not between your daughter having to be picked up and being able to run and jump; the research offers the potential of being able to choose between your daughter, who is unable to run and jump, and an entirely different individual, who would be able to run and jump.
In short, if the only option for your daughter was to be born with spina bifida or not to be born at all (and someone else be born instead), and people advocate research which would make the latter possible, some see this as implying a view that it would have been better if your daughter had not be born at all rather than that she be born with spina bidifa.
Isn’t the view rather that it would have been better if the same person hadn’t been born without a disability? If my daughter would have been born without spina bifida, she still would have been the same person, essentially.
The research being done is to attack (for lack of a better term) the condition, not the people.
I think we’re having two different arguments. Your argument, UDS, has tones of “abort fetuses which will become disabled babies” – a slippery slope for sure. I thought the point to the OP is that soon we will be in a position as society (or whatever) to make sure that disabilities simply won’t happen, and won’t the people who are already disabled feel stupid then. I’m being fascetious, but youknow what I mean.
As for would I rather have had my daughter not be born at all, or be born as she is … I think you can guess that answer. I’m too close to it to be objective. But then again, there will always be somebody who is too close to some one who is disabled to be objective.
I’m no expert in spina bifida, but as I understand the OP it refers to research into chromosomal or genetic conditions which are present in the human individual from the moment of conception. The only way to prevent these conditions (other than through abortion which, as you say, is a whole ‘nother debate) is to ensure that affected genes do not get used in conceiving a human individual. That is what the research seeks to make posssible.
Assuming spina bifida is such a condition then, if this technology were feasible, and had been applied in your daughter’s case to exclude the possibility of your conceiving a child with spina bifida, any child you conceived would be made up of different genes. In other words, he or she would be a different individual, as different from the daughter you now have as any brother or sister of hers. She would not be the daughter you now have, but without spina bifida.
It is pointless to ask whether your daughter would be better off in this situation; the question has no meaning. Advocating this research does not, therefore, imply any judgment about the worth or value of your daughter who, like everybody else, is of infinite, measureless worth and value, and whose worth and value does not depend to any extent on whether she has spina bifida or not. But I can see how some people might think that it did.
The flaw in that logic is that no one is trying to rid the world of people with disabilities, rather to rid the world of disabilities so that future generations will be able to live better. It seems to me not that the world would be a better place without persons who now exist with genetic disabilities, but that it might be better if future generations did not have to struggle with the consequences of genetic disease. I don’t see that the issue has anything to do with validation. People in this generation are better off (one could probably get an argument here) having computers at their disposal, but that in no way implies that past generations who had no such advantage were somehow less valid. People are valid based on what they do, not on what they are.
The problem with your logic is that you are equating a person’s disability with the person herself. The goal isn’t to eliminate “people like that,” but to eliminate “diseases like that.”
Jack Batty–
The sperm and egg that came together the moment your daughter was conceived were, as you know, only one of millions (billions?) of possible suck pairings. I have no doubt that had the outcome been different–had another daughter or another son been born nine months later–you would have loved them neither more nor less than your daughter.
First of all … cool typo. If it had been a “suck pairing”, I wouldn’t have a daughter at all.
But you’re right, I love my daughter, and would if she had ten arms and rollerskates for feet. But you know, just for sake of clarity, spina bifida is a developmental condition. It happens in 1 in so many babies (I’d like to say 1 in 100,000, but I’d have to look for an actual cite). Spina bifida is a description of the non-formation of the spinal column after a certain time. It’s like everything is hunky dory as the brain is developed, the heart the lungs, the arms (we’re talking in the womb here). And at some point something goes wrong, and the development either stops or goes a little goofy. In my daughter’s case, it really did a number on her organs and skeltal and muscular development from about the waist down. Severe cases don’t survive birth.
Anyway, that’s a long way of saying that even if one of my several million other swimmers got through, it may have still happened. Or it may not have as is eveidenced in her perfectly healthy twin brother.
So maybe spina bifida isn’t the ideal condition to use as an argument in this thread.
“”"“Does chromosomal research today invalidate the lives of disabled people?”"""
The connections between thought and ‘physique’ are moving closer each successive generation. Does the ability to diagnose schizophrenia, instead of torturing, drowning and/or burning them at a stake for being possesed by daemons that seek to destroy all of civilization and bring the Devil incarnate to bear upon and corrupt all of society phew!… make those people of the past irrelevant? I believe it does.
Slightly different slant on the OP, I however am convinced that they are inseperable.
Parent here of kids with conditions that hopefully in the future will be fixable or preventable.
I’d choose not to have kids who are on the autism spectrum in a heartbeat. ADHD, or ADD primarily inattentive… I’m less sure about that.
I value and love my kids very very much but I also see the issues which make life tricky for them. If I had a choice between embryo A who came complete with Aspergers or HFA or embryo B who comes without it, I’d choose embryo B. I don’t see this as invalidating the children I currently have. I’ve had many many miscarriages – I grieve those as losses but I don’t grieve the individual personalities because I don’t know them.