| Designer deafness
Posted: 9/29/2006 9:20:29 AM | http://www.newscientist.com/blog/shortsharpscience/
Apparently, a small percentage of couples using IVF are using genetic screening to make sure their children have the same disabilities they have. The one case that the article highlights is deafness.
The article also raises some interesting moral questions about using or not using genetic screening during normal pregnancies to screen out defects and disabilities.
What are your thoughts? | |
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Rus
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Joined: 1/22/2005
Msg: 2 | |
| Designer deafness
Posted: 9/29/2006 9:37:50 AM | | Good points on both sides of the argument. But you gotta wonder what kind of parent would deliberately disable their child? What else would they do to them? | |
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| Designer deafness
Posted: 9/29/2006 10:26:12 AM | | any parent who would deliberately disable their child should be sterilized. no questions, no debate...just sterilized. why would you handicap a child on purpose? | |
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| Designer deafness
Posted: 9/29/2006 12:55:50 PM | Well, I think that if my parents had this option back in the day. I definatley would NOT be here right now giving my two cents worth.
Sometimes I think that there is such a thing as: Too much Technology. Or abuse of it. Natural is natural. I think you could use said technology to help enhance the quality of someones life after words, but to terminate because there is thought to be a defect............ I don't know. Thats a tough one. And I'm disabled.! | |
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| Designer deafness
Posted: 9/29/2006 2:07:05 PM | My son is profoundly deaf in his right ear. He has about 15% in his left. There is a cochlear implant in his right ear now and its great watching him react like a normal kid. After all these years of signing to him, he's not shutting up either. Which is kinda funny.
Playing rough with him doesn't work well, as the implant falls off. Swimming is terrifying for me as he isn't old enough yet to understand that he can't swim and I have my glasses off. (Seeing aid) Yea I can' swim like a fish but need to hang out near him. The hearing aids limit his abilities and will severely limit the career opportunites for him.
My opinion on any set of parents who want to cripple a child is not kind to them. Kids are a blessing and it is up to us to create for them the best possible world we can. I don't understand how giving your child the same disability does that.
But what do I know. I get my boy again on Sunday. Hitting Toys R Us in Nanaimo then some LEGO action. | |
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| Designer deafness
Posted: 9/29/2006 2:11:57 PM | I think the idea of creating disabilities is just appalling. This will create grounds for lawsuits down the road. If i was made deaf by some doctor I could sue them for all they are worth. So, even tho the parents asked for it you could argue that was an infringement on your rights. Bad idea
As for genetic testing...do we want a gattica type world. The arguements for it are that we can screen for these illness' and cure them before they cause the person pain and suffering. On the other hand its playing god. I think the problem is knowing where to draw the line which is a large matter of debate thus why it has been banned thus far. The old slippery slope problem.
Is it wrong for a man to steal a loaf of bread to feed his starving family?
what if he has a large family- is a truckload ok?
what if his family does not like bread, instead they like cigarettes?
what if instead of giving them away he sells them for a price that is pratically giving them away? | |
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| Designer deafness
Posted: 11/2/2006 3:23:35 PM | I think I can explain. Deafness is a culture, because it involves communication. There is no such thing as blind culture, or wheelchair culture--but there is deaf culture.
These parents want their children to be part of their culture.
I'm not saying I agree with them, I just understand them. | |
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| Designer deafness
Posted: 11/2/2006 6:37:37 PM | it's one thing to want your children to be part of your "culture", but really...if a mentally challenged couple had a child and wanted the child to be mentally challenged as well, would that be right?
HELL NO!
it wouldn't be right for a parapalegic couple to hobble their child either.
it's not right to handicap someone. all they're doing is being selfish in wanting their children to "be like them". they're not thinking of the long-term drawbacks. | |
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| Designer deafness
Posted: 11/2/2006 7:26:37 PM | smith- you beat me to it.
I have a friend on here who is deaf. She's Peurto Rican and I never knew she was deaf until she told me about a week ago; if that.
She made a post like this one on a different message board with the explanation of why some parents would want their kids to be deaf. It IS a culture to many of them and MANY of them are "snobbish" about it.
I was watching the Mom Show today (my daily birth control) and they were talking about deaf kids and the benefits of getting your baby (even a hearing child) to sign early on in life.
Did you know that at 9 months of age you can recognize about 15-30 words, but if you teach your baby just from 6 months to sign, they can recognize up to 60-80 words? A baby's hearing ability is develops more slowly than their sight; even though right after birth and for the first few week-months their sight is akward (they see double), it improves and grows faster than their ability to hear and understand. One mother hand a 19 month old who signed better than he could speak; he was 'talking' in full sentences just by having been taught to sign since he was 6 months old. He's a full hearing child too.
I'm not saying go ahead and if you're deaf make your kids deaf, but ask just about anyone with a "disability" and many (if not most) have the opinion they are NOT disabled, they just have different sets of challenges they have to overcome.
Being deaf is a culture, whether many of us hearing folks want to accept it or acknowledge it the fact remains it is and many of those who are deaf vehemently defend it.
ETA: As for screening for genetic defects I think it's acceptable in many circumstances. There are a few rare syndromes out there that make a child's life not only short but hellish. One, which I can't think of the name right off the bat, causes the child's skin to be paper thin and tear at just about every movement or touch. The children normally do not live to see their first birthday. Another one makes the bones brittle, so changing a child's diaper usually, almost always, results in breaking their hips or fracturing the pelvis. Another one, which has been documented on the Life network, has a little bit longer life expectancy in people afflicted with it yet causes the body again to open huge wounds and "cripple" them; cannot walk because they're fit slice open to the bone (in some cases). People with this usually die at around 30 and go through their days being unable to move normally, even sleep normally without tearing open their flesh.
Still, there are more common congenital defects, (and again I cannot recall their actual names) which cause those with them incredible pain and very short lives. Tay-Sachs is one I can think of, Huntingtons is another. Sickle Cell Anemia. Edwards Syndrome.
If I were pregnant and had the money I would screen for absolutely -everything- under the sun.
To me, I would rather NOT have a child who will be in severe pain for a short life and simply "weed" (god I hate that word) out and give them back, so to speak; spare them the pain. | |
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| Designer deafness
Posted: 11/2/2006 7:47:43 PM | | i have several deaf customers at work, and i agree it is like another culture...i just like to make them smile by trying to pick up a little sign language and signing a little bit during our interaction at the till... | |
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| Designer deafness
Posted: 11/2/2006 8:02:00 PM | the movie gattaca explores this exact thought
what if you could prevent your child from EVER suffering from any kind of disability or disease?
perfect vision, immunity to obesity, all perfectly working organs
if I could do that for my child, you bet your ass I would
my daughter has kawasakis disease and her heart grew to twice its normal size
valves stretched, and we were told that she could never live a normal kid life
no running, jumping, gymnastics....
on her last check up though, everything had worked its way back to normal, and she is a normal happy kid again
but I would give anything to have never had to go through that | |
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| Designer deafness
Posted: 3/13/2007 9:19:10 PM |
I think I can explain. Deafness is a culture, because it involves communication. There is no such thing as blind culture, or wheelchair culture--but there is deaf culture.
These parents want their children to be part of their culture.
I'm not saying I agree with them, I just understand them.
I am profoundly deaf. My father is fully deaf also. It's funny; we're not biologically related. Just a coincidence, ot maybe I was overly emphathetic as a kid- that or deafness is contageous.
For hearing families to have a deaf child, it can be frightening and devastating at first. Same goes with a deaf family having a hearing child: Its unfamiliar territory and culture. In college I was friends with a deaf couple. When Kathy gave birth to her son, the nurses checked his hearing. When the baby obviously was deaf, the parents were thrilled. The nurse was aghast at their attitude, but for my friends it was perfectly natural and preferred to have a deaf child.
My ex husband is deaf too, buit both of our children are hearing. Yet they sign fluently and people frequently ask if theyre deaf, because they have the same mannerisms and culture of deaf people - in some ways though not most.
I dont think the article was tageting all persons with disabilities, but highlighting this as a disability although its not at all a debiliating condition.
I doubt that I would ever get a cochlear implant, because that would greatly limit what I can do. A cochlear implant doesnt make one hearing- it impairs the user of having a hearing or deaf culture.
If 2 parents are deaf and thier kids are deaf, and they communicate in sign language and have all the technology features like computer, text phones, lights flashing for baby cry or doorbell, alarms, and closed caption TV, then where's the disability??? Probably the visitor who knows no sign language. | |
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| Designer deafness
Posted: 3/13/2007 10:35:17 PM | | I will reply more on these issues at a later time and date as we have done some extensive studying on some of the ethics around many of these issues in one of the courses I am taking. The article you have mentioned though is not advocating creating disability as a general rule, it is about one type of disability (if you could even call it that), in today's society being deaf is considered a culture, it is natural therefore that parents who have hearing loss would want their child to be of their culture (especially if they don't see themselves as missing out on anything). People who have a disABLILITY lead full and productive lives and people who live in the deaf culture are no exception to that rule. Being that it has become a culture we need to respect the parents choice in the matter. Now with that being said I can also see the other side of the coin and by no means am I saying it is ok to create disabilities as a general rule. This is a huge ethical issue that needs a lot more education and reflection. | |
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| Designer deafness
Posted: 3/13/2007 11:12:03 PM | If two deaf parents have hearing kids, obviously those kids will learn to sign, so wouldn't that make them part of both hearing and non-hearing cultures? They would still be able to communicate with deaf people, and their parents are part of the culture, so wouldn't that include them by association.
I don't know, to me this makes the most sense as they would have access and be able to be a part of both cultures, and have that many more doors open for them. Unless the deaf culture doesn't want people included who can hear, even though they can still communicate/sign. I have no idea if this is the case, just kind of wondering.
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| Designer deafness
Posted: 3/14/2007 9:03:31 AM | >>If two deaf parents have hearing kids, obviously those kids will learn to sign, so wouldn't that make them part of both hearing and non-hearing cultures?
Yes, hearing children of Deaf parents are considered part of the Deaf culture. They are called codas (it's an acronym for children of deaf adults). But a lot (maybe most) Deaf parents would rather have Deaf kids, so I guess it isn't the same.
>>Unless the deaf culture doesn't want people included who can hear, even though they can still communicate/sign.
Someone who is hearing and has learned sign--like me--can never be considered a part of their culture, although I may make friends in the Deaf community and even attend Deaf social events. It's not that they choose to exclude me; I just didn't grow up in their culture.
Just like an adult who immigrates to America will never be fully aculturated (sp?) into American life, although their children might be. | |
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| Designer deafness
Posted: 3/14/2007 9:44:22 AM | ummmmmmmmm.. kinda like two hearing parents forcing their deaf child to be hearing so the child can relate better? or perhaps so the raising of the child would be easier on the parents?
I'd love to get the deaf parents to admit that it basically boils down to just making things easier on them to give the child the "disability"
what do i, a profound/severe hearing loss person, have to say about this whole thing?
STUPID STUPID STUPID!!!!!
I'm raising two rambuctious, healthy fully hearing boys and would NOT wish any kind of disablity on them.. none, even through days when my own becomes an obstacle
life itself is a challenge ... roll with the punches babes | |
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| Designer deafness
Posted: 3/14/2007 10:02:04 AM | Having read about pre-natal selection of deafness the first time at least two years ago, I've had time to mull over the ethical implications of this for some time. My opinion hasn't changed.
This is child abuse.
For selfish reasons, parents are actively making it difficult for their child to interact with the wider world outside of deaf culture. It should not be allowed.
I used to hang out with a guy who was born deaf and had serious hearing aids. He was very bright and hard working. And he was limited in his ability to communicate efficiently and rapidly with people unproficient in ASL, even those who knew him well.
As the deaf culture advocates say, language is culture. They are actively preventing their child from living as effectively and fully as he could in this larger culture in order to keep him tightly bound into their insular and limited culture. Doing this through behavioural models and education is one thing as it leaves the adult with a choice. Destroying your child's hearing through pre-natal screening or genetic intervention is no different than ramming knitting needles into their ears post birth.
Cheers,
Mike (I have zero tolerance for child abuse in any form) | |
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| Designer deafness
Posted: 3/14/2007 11:45:20 AM | Whitetigeress, I am guessing you are deaf, not Deaf. The fact that you describe yourself as a "profound hearing loss person" kind of gives that away. :)
To the Deaf, deaf isn't a dirty word, or even a handicap. They certainly wouldn't engage in verbal gymnastics like that to avoid calling themselves deaf.
>>ummmmmmmmm.. kinda like two hearing parents forcing their deaf child to be hearing so the child can relate better?
Yes, it is very similar! And this is just what happens when hearing parents decide to give their deaf baby a cochlear implant. | |
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| Designer deafness
Posted: 3/14/2007 1:59:33 PM | Intresting topic.
I have to agree with Urbanx, that it falls within the guidelines of Child Abuse.
What we are looking at is stripping an unborn child of his/her fundamental rights to experiance life within it's full parameters, an atrocious misuse of genetic engineering, in this case designed with the singular use of maintaining structure within the family unit or household.
Using "culture" as an excuse to justify one's actions, as in this case, does not resolve the issue of a child's right, albeit unborn, to choose. I cannot believe a child will thank the parents in years to come for stipping them of the ability to both hear, as well, make decisions that impact their everyday life, nor can I believe in years to come a young adult reaching the age of majority would consent to having their hearing removed.
Having said this however, I feel for the parents, I too have deaf friends, and know well of the culture surrounding this particular disability..tho they do not see it in any way as a disability per say, and often joke they do not have to listen to the endless barrage of politicians......They have children who are both deaf, as well as, not deaf, and they would never, ever, want to take away a child's ability to interact with this world in anyway.
Ultimately, child abuse is child abuse.
Genetic screening has it's applications, tho in this particular case, it is no doubt being misused as an attempt to maintain familiarity.
I feel the Government needs to step in to legislate how and when this can be utilized. Tho we all know the havoc that might create.
Good Thread. | |
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