Been reading up on the controversy in the United Kingdom over the proposed bill (as a bill, it is not yet law) to forbid the implantation of deaf embryos when doing IVF. The subject brings up questions, and also stirs mixed feelings. If we say that IVF is a substitute for natural child procreation, then we could say that yes, people who want a deaf baby should have the right to choose a deaf embryo to implant instead of having to take a hearing embryo.
On the other hand....if insurance companies are paying for the IVF, which is an expensive procedure, is it fair to expect the insurance companies to foot the bill for the deliberate choice of a deaf embryo that may need additional expensive services such as hearing aids, speech therapy, and cochlear implants? If we believe that IVF is a substitute for natural child procreation and that the children created are equal, then the same question of "fairness" could also be applied to the naturally created deaf children of deaf parents.
Yes, deaf children in deaf families growing up with sign language and full access to the deaf community and deaf culture can and do have good lives. But let me ask this question of those who had a difficult time growing up deaf: would you have chosen to be born deaf? Would you have chosen to experience the years of feeling left out, discriminated against, and difficulty in communicating with hearing people?
I once asked my mother the challenging question: If you had known I was going to be born deaf, would you have had an abortion? Her answer was a frank "yes." How did that make me feel? I was not surprised at the answer. I didn't feel any better or worse for it - I understood.
Friday, March 14, 2008
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10 comments:
The bottom line, is that it is a culture based on a sensory disability, do we have the right to perpetuate disability ? is the question ? not we have a duty or obligation, to protect culture, which to all intents and purposes is a re-invented wheel every generation, now, or in the future this may not be the only option. Choice makes things difficult for some, but choices will be used.
Yup, I did ask my father the same question and he did say yes that I'd be aborted.
What do you mean that you understood? Details please if you don’t mind. For me, I was like whoa. I am so speechless. I appreciate your mom’s honesty but I was like ouch when she would abort you just because you are Deaf. It’s hard for me to understand. What’s more, you just didn't feel it. I asked my mom and she immediately said NO WAY. It made me feel good. What if she says "Yes", I will be heartbroken that my own mom wants to eliminate me just because of her misinterpretation on “Deaf".
Did you ask your mother if she realized that you are normal as hearing people after you were born?
Thousands of deaf people are
faithful American citizens, working and TAXPAYING to Uncle Sam and voting for legislators. Deaf people are as normal as hearing people.
Some hearing people cannot read
or read (semi-lingual) while deaf
people are bilingual. Should
semi-lingually hearing people be
dumped in the woods?
Jamie, I found the last part of your post over-generalizing. I was born to a hearing family, and many don't sign. I've had a lot of frustration in my life because I'm Deaf. But I don't regret my being Deaf one bit. It's given me entrée to an amazing community and a beautiful language. I'm not disabled - society is. I consider the state of being Deaf simply one of the many possible variations on being human, and so does my family. My mom has told me so many times how glad she is to have me in her life.
-Jenny
Your mom's comment made me ponder. Probably mine would have considered it, too, as clueless as the typical parent of a newborn Deaf would be.
This is an emotional decision made out of ignorance when one is told a fetus has a difference. If your mom knew who you would turn out to be, knew you as a person ahead of time, the answer would have been much different.
The moral? Parents of Deaf babies, get to know some adult Deaf really well and glimpse the future of your child.
speak for yourself, my darlin.
thanks for sharing your OPINION.
Are you refusing to post any comments? My comment was quite respectful and did not criticize you nor your parents. If that's the case, I'm disappointed, Jamie.
-Jenny
Hypothesis can be a barrier to clear logic and therefore muddy the waters. It is no good asking people if they would have considered abortion if they had known their babies would be born deaf. The fact of the situation is that the sperm, as ejaculated, should not be messed about and interfered with. It should be stored as is and then injected via IVF. Nothing more, nothing less and it is in conformity with the laws and course of Nature.
The problem with the HFE Bill is the wordings and implications contained in Clause 14(4. It defines deafness as a serious illness, which, by virtue of the definition and meaning of the word 'illness’, it is not. And it introduces selection - giving doctors and scientists the right to discard what they consider to be 'inferior' genes. The very fact that selection itself is being made lawful turns the situation into a state of 'legalised eugenics'. Nazi scientists and geneticists experimented to achieve a perfect and ideal human being, that of Scandinavian type with blonde hair, blue eyes and so on. It is no different when our scientists are being allowed to label "hearing" as the perfect specimen of homo sapien sapien over the deaf one - that is the whole point of the objection. No deaf person has said they are planning to have a deaf baby every time they wanted a child - this was concocted and twisted by the media.
One must be careful when they interfere with Nature... there is always action and reaction. Since Life and Nature exists on the rconcillation of the opposites, I would worry about the course Nature may take to redress the imbalance...
A couple things came to mind when I was reading this article. When you said you were posting about the UK controversy, something came to mind related to a Star Trek: Voyager character, the Borg. What's to stop us from getting to the point where we're more Borg/machine than human? Voyager had a scene where two characters beamed onto a Borg cube open a nursery 'drawer' which had a baby inside with Borg implants.
Then I said; "But even then, Voyager has at least a point in asking indirectly where we will stop when we actually make a Borg. Then the question will be when being human stops and when being Borg starts."
"We are Borg. Resistance is futile. You will be assimilated. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to serve us. Resistance is futile." We hear this quote many times when a Borg ship encounters a non-Borg ship.
Then what's to stop our "Borg-ed" offspring from "assimilating" others? Yes, I know it's science fiction, but even then, sci-fi has a way of coming true. Science has actually created nanomachines.
There was a book I remember reading where this doctor actually 'modifies' embryo genes so that the kid doesn't grow up to become an alcoholic or something like that. What's to actually stop that from happening so that deafness and other diseases are 'edited' out of the genes and 'perfect' humans are born?
Think of how much the total cost would be when you combine IVF with embryo implantation and/or gene modification. A rich person's procedure. Something only done in sci-fi.
Seems this is more an ethics debate than anything.
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