Deaf demand right to designer deaf children

[Big Don]

Deaf demand right to designer deaf children
Everyone wants to share characteristics with their children, inflicting a disability on them is unconscionable. Should amputees be allowed to lop of their children's limbs?

 

[MA-Caver]

Deaf demand right to designer deaf children
Everyone wants to share characteristics with their children, inflicting a disability on them is unconscionable. Should amputees be allowed to lop of their children's limbs?

Only if they themselves were BORN amputees. (sarcastic)

This is a matter of cultural pride and heritage on the part of deaf parents (including my own) as the article states :“There are a number of deaf forums where there are discussions about this. There are a small minority of activists who say that there is a cultural identity in being born deaf and that we should not destroy that cultural identity by preventing children from being born deaf.”
I would agree that a parent should allow their child to be born as they are intended to be born; deaf, blind, a chromosome short, autistic, cerebral palsy and so on. or be born "normal". Manipulating the genes to have a "designer child" is wrong and is against nature. Eventually if this keeps up we could get into a "Gattica" type state of thinking and will have a separation of superior and inferior genetic breeders.
A child born less than "perfect" is, in my opinion, a test to the parent. How much love, attention, caring, money will you spend on the child as you raise it? Will it be the same as with your other "normal" children? What is in YOUR heart? It speaks with the treatment of your child no matter what it's condition. It's a test for a civilized society as to how well it's cared for outside the home, when it grows to adulthood.

I know (many) deaf couples who say they would be thrilled if their child was born deaf, but they are just as happy with their hearing children and love them no less. I have also known hearing couples who were disappointed that their child could not hear well. To the point where they didn't bother to learn sign-language (or enough of it-- beyond the crude "home-made signs") so to better communicate with them as they were growing up. One woman I know actually threatened her deaf son (as soon as he was old enough to understand) that should she SEE him using any form of signs she would cut off his hands. She has since learned better once the (deaf) instructors at the special school he attended realized that her child wasn't retarded (forgive the use of the word as I know it's no longer p.c.) but had a normal I.Q. but he was so traumatized by his mother's threat that he shut himself in. Over time he eventually came out of his shell.
Now many (hearing, and a few deaf) parents are opting for Cochlear Implants in their toddler children. The procedure in my opinion is nothing more than mutilation because it requires drilling a hole in the head to put in the device. It does not always work either.
The deaf have worked long and hard for centuries to rise up to the level of the hearing, for example there are now Deaf individuals who hold Ph.D's and multiple Ph.D's in various fields. A well known Deaf man stated: "The Deaf can do anything but hear." ~ I. King Jordan Ph.D

No, I disagree with altering a child to suit the needs of the parent... before or after birth. They should be allowed to be born and raised as they are.

 

[Ceicei]

For many deaf people, deafness is not viewed as a disability, but rather as a culture, a way of life. We have our ways of "speaking"and even signing has their own regional signs and "tones". Sign language vary by country as well.

We also have behavioral and cultural rules within the deaf community of how we relate to each other. We have our deaf folklore as well. There are experiences and traditions that are handed down, especially among those who are genetically deaf. Those who are not, but live among a community within residential schools, also pass on such experiences and traditions.

It is not a stretch then, for some of the deaf, to attempt to preserve all that, by wanting children who are, like them, also deaf. This is no different, in the minds of some other people, than those who want their children to be of the same race as themselves.

In this context, deafness is not viewed as a disability or a "loss of something" at all.

However, when we are to be within a larger society, the hearing world, that behaves differently, and expect us to comply by fitting in with their expectations, then some of the deaf do not succeed as well. We are then viewed as different, as disabled, and lacking the ability to hear like everyone else, to participate in the activities of the larger society.

It was Helen Keller, I believe, who said this (I'm paraphrasing here), "The blind are separated from things and the deaf are separated from people."

Even though most of us can see all the things and situations around us, we miss out on the every day nuances and the subtle information that come through in everyday conversations of hearing people around us.

We may be among you, but more often than not, we feel isolated while in your midst.

Not all deaf people feel that way. It depends a great deal upon how much they can hear, and their level of exposure and understanding of cultures, whether of the deaf or hearing, or both.

I have associated with many who do, and from being with them, it does not surprise me for them to actually celebrate the event should a child be discovered deaf.

I tell you this to allow you some insight how some of the deaf view the world they live in and the associated challenges and blessings we see.

- Ceicei

 

[Big Don]

Ceicei, would you share some "deaf folklore"? That really set my curiousity off.
I can understand how you would feel isolated and feel a compulsion to apologize, though I don't know any deaf people in real life. I can understand how a deaf couple, upon having a deaf child might celebrate, what I cannot understand is the idea, as presented in the article, that purposely acting to deprive a child of hearing is something wanted by anyone.
While my intent is not to impugne deaf people in anyway, what those in the article are demanding is nothing less than child abuse.

 

[tellner]

MA-Caver, the "against Nature" argument is a pretty lousy one. It's "against Nature" to wear clothes, live in houses, eat with utensils and use fire. I would have been dead several times over if I lived according to "the Dictates of Nature". Antibiotics, anti-diarrhea drugs, surgery and cancer therapy are all "unnatural". Come think of it, what I had done a few years ago was much more invasive than drilling a hole in my skull. It involved cutting my throat from ear to ear, a complete dissection of the neck and upper chest and the replacement of certain natural hormones with *gasp* artificial man-made ones

Heaven forfend! I'm committing a Crime against Nature and should kill myself immediately out of shame!

Yeah, right.

You wear boots, use ropes probably have a carbide headlamp and carry a knife when you go caving. Every one of those is unnatural. And every one of them has the potential not to work.

When it comes to modifying organisms before birth there's a huge ethical territory to explore. Would it be morally wrong to prevent Alzheimer's, cystic fibrosis, Tay-Sachs or ALS before birth if we knew how? I contend that it would be the depth of cruelty not to. Incidentally, screw Jeremy Rifkin and his "Sacrality of the Genome".

The wrong color hair and eyes? That's another matter entirely. And if you're going to accuse me of being a eugenics-crazed Nazi for the previous paragraph, don't bother trying. You'll end up tripping over your own logic and running headfirst into inconvenient facts.

The way you laud the deaf and damn the hearing is clumsy and childish. Deaf people, you say, are open minded and accepting of their hearing children while the hearing are prejudiced and abusive. For evidence you talk about one parent. I can match you anecdote for anecdote with a coworker's sad story. His brother in law is militantly deaf and tried to get a doctor to destroy his hearing son's inner ear to make him deaf. When the doctor wouldn't do it he beat the kid every time he tried to speak signing "No mouth! No mouth!" He'd refuse to give food if the boy used his mouth to ask.

Thank G-d the evil Nanny State took the boy away and placed him with a decent family.

 

[shesulsa]

Goodness. You make your points very vividly, Tellner ... sometimes you make me squirm and not in the good way, however.

I wonder what the consideration criteria should be for this kind of thing. Is there such a thing, for instance, as a "livable" "disability"? Who qualifies it as livable and who qualifies it as a disability?

Tellner, would you be the same man you are today had you not had to fight for your life? Do you see life threatening and/or permanent non-typical human conditions (nice way of saying 'illness' or 'disability' or 'disease') as stepping stones or throwing stones? And how much does perspective really matter here?

I have to say, I respect that cultures are formed within factions of society, whatever that 'faction' may be - the non-hearing, the non-seeing, the diabetic, the non-neurotypical, the HIV poz, our brothers of another color, another language, another world, female, male, sexually transgendered - dear Lord the list is endless. *However* - I cannot imagine engineering my child for something that could cause difficulty, separatism no matter the support available. If I had a choice between hard-of-hearing/deaf or autistic I think I'd choose hard-of-hearing/deaf.

But is this choice ours to make??? Is the switching off of genetics really the *right* thing to do?

You know Buddhists have an interesting take on things: they accept that all life is suffering and as soon as we accept this, we can move forward and set about healing, helping, finding the joy in little moments and making ourselves better for the next trip in the hopes that this final one will be easier.

But is easier ... better?

And is causing suffering better because it gives us company?

I think the answer to both of these is 'not necessarily.'

 

[Andrew Green]

From my understanding of reading the article, and then doing a little google work, it doesn't look like they are modifying the genes, to make the child deaf.

More of a screening process, where the eggs are fertilized in a lab, and once they hit a certain stage they are screened before implantation. If they donn't pass the genetic test they are not used.

By the sounds of this what they are doing is fertilizing a few eggs, testing them genetically, and then the parents choose which one to implant. What they are fighting for is the right to choose the deaf one when a healthy one exists.

I still don't agree with it, but I think it does change the ethical questions if I am reading that correct.

 

[Big Don]

From my understanding of reading the article, and then doing a little google work, it doesn't look like they are modifying the genes, to make the child deaf.

More of a screening process, where the eggs are fertilized in a lab, and once they hit a certain stage they are screened before implantation. If they donn't pass the genetic test they are not used.

By the sounds of this what they are doing is fertilizing a few eggs, testing them genetically, and then the parents choose which one to implant. What they are fighting for is the right to choose the deaf one when a healthy one exists.

I still don't agree with it, but I think it does change the ethical questions if I am reading that correct.

It isn't that they are purposely maiming, what they want to do is screen for the (apologies if needed) deformity that they want and discard the "unsuitable" embryos like so much garbage. That was why there was so much controversy over harvesting stem cells if you will recall. Many see that kind of thing as wrong. Deafness, like many things is rare, so it is foreseeable that in order to get that one deaf embryo, they might have to discard dozens or more while waiting for the genetics to click just right, or just wrong, depending on your outlook.

 

[Andrew Green]

This part:

A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist.

lead me to believe that they where not discarding a healthy one and trying again, but rather choosing the dissabled one from a group of created ones, and discarding the rest. So that regardless of which one was choosen the same number would be discarded. Which I think is a slightly different ethical issue.

 

[Big Don]

This part:



lead me to believe that they where not discarding a healthy one and trying again, but rather choosing the dissabled one from a group of created ones, and discarding the rest. So that regardless of which one was choosen the same number would be discarded. Which I think is a slightly different ethical issue.

If they are specifically choosing the disabled embryo, and discarding the rest, it doesn't make what they are doing any less horrific than if they were physically maiming their child.

 

[tellner]

Shesulsa, it was meant to be uncomfortable. Sometimes the fastest way to clarity on these issues is to use lighting that puts everything into sharp relief and doesn't hide the ugly bits. Sometimes it just makes people go for the knives.

Dying of cancer or cystic fibrosis? It doesn't get any starker than that.

An attempt to breed a "Master Race" by eliminating people based on tribe or appearance? We know that leads to evil and madness.

Selecting for traits that you believe will give your child a better chance in life? That one is tricky, and I don't know exactly where I stand on it or how to set the moral boundaries. Maybe with time I'll be able to tease out the fundamental principles and clarify them to my own satisfaction.

Selecting for a disability for social and group identity reasons? I think that's a bad idea. Is deafness a disability? With all respect to the deaf community I currently believe that it is, although I would be open to discussion. It is certainly one that is not life shortening in a developed world. When our ancestors lived on the savanna chasing gazelles and running away from hyenas the size of lions it was a serious liability. We don't live there any longer. I can't find an easy satisfying answer.

 

[Big Don]

Selecting for a disability for social and group identity reasons? I think that's a bad idea. Is deafness a disability? With all respect to the deaf community I currently believe that it is, although I would be open to discussion. It is certainly one that is not life shortening in a developed world. When our ancestors lived on the savanna chasing gazelles and running away from hyenas the size of lions it was a serious liability. We don't live there any longer. I can't find an easy satisfying answer.

Law.com's legal dictionary definition of disability:
[FONT=arial, helvetica, swiss]n. 1) a condition which prevents one from performing all usual physical or mental functions. This usually means a permanent state, like blindness, but in some cases is temporary. In recent times society and the law have dictated that people with disabilities should be accommodated and encouraged to operate to their maximum potential and have the right to participate in societal and governmental activity without impediments. Hence, access by ramps, elevators, special parking places and other special arrangements have become required in many states.[/FONT]

 

[Ray]

MA-Caver, the "against Nature" argument is a pretty lousy one. It's "against Nature" to wear clothes, live in houses, eat with utensils and use fire.

Beavers dam creeks, bees build hives, monkey's use tools. Man is just another animal and it is our natural programming to wear clothing when it protects us from the surroundings; to build shelter of some kind; and to continually learn and modify our surroundings.

 

[kaizasosei]

just goes to show that being deaf isn't as bad as being stupid. i mean, most parents would be more than happy if their child has a special gift that they do not. i can't imagine anyone would want to give their child a disability on purpose.

the only way i can see this being somehow explainable other than the case of some peole being wrong, is that if people live in communities for the deaf and then come to the conclusion that deaf people are better than people that hear. that hearing seems to them objectively to be something unnecessary that will only confuse the child as well as possibly impede communication between parent and child.

still i think it's too wild.

i can't imagine many people that would willingly want their kids to have a disability .....? i find it a bit mindboggling.
definately reaches into the philosophical realm.

 

[Kacey]

I understand the concept of wanting your child to share your culture - no matter what that culture may be. However, I am concerned about the idea of deliberately choosing to implant an embryo that has a condition (whether you consider it a disability or not) that will put the child at a potential disadvantage in the future - especially when the potential disadvantage can be avoided as easily as it is selected for. And then, too - this is a choice made by the parents - not the child. Obviously, such a decision would have to be made before the child could make an informed decision for him/herself.

Another side of this issue is the parents who refuse cochlear implants for children who could become hearing because it will isolate them from the deaf community. As above, this is choosing to put the child at a potential disadvantage, because by the time the child is old enough to truly choose for him/herself, s/he will be too old to gain full (if any) benefit from the implant. Does it work for everyone? No... but neither do quite a few other surgical procedures intended to correct/modify/reduce congenital conditions. If the implant worked to its greatest extent when implanted at 16 or older, so that the child was old enough to make an informed decision - then yes, I would agree with delaying the implant. I don't have a problem with a teen or adult who has had the implant deciding to turn it off. I do have a problem with preventing the child from having a choice when s/he is old enough to make an informed decision.

Medical advances continue to create ever more slippery slopes - and they get slipperier all the time. This is another example of medical ability outstripping medical, and societal, ethics. Just because something is possible does not make it right (or wrong) to do... but I do think that some things that are possible should not be done (or prevented from being done) until the implications of the procedure are clearer.