I Don't Know What To Think

Read.

Then discuss below.

Me? I have no idea what to think. Not being deaf or a dwarf, I'm not sure I have a right to an opinion. If I develop one later, I'll update here.

Thanks to MotherTalkers for the link.

Comments

[akeeyu]

Since being of average height or being able to hear are not life threatnening (or quality of life threatening) illness, I don't agree with PGD for either of those things, any more than I agree with PGD for sex selection.

[Kris]

I think this is another example of technology getting used in a way that the people who developed it never intended. Whether it is right or not I don't know.
My immediate gut reaction was...why don't we take it a step further and purposefully genetically modify babies so much (so they will not survive after birth) but that their stem cells can be used to cure a sibling/parent with a disease. The whole thing gives me the creeps though.

K.

[Whitney]

I can see wanting a child to be like oneself, but to me, parents choosing this are risking needless suffering for their children. Being a dwarf, I would think, comes with a lot of medical problems that an average height person doesn't have. I'd rather have my child teased about his parents, then have a genetic disorder that I could prevent.

The deafness is a harder issue for me to form a solid opinion--while not causing a debilitating physical problem, why would you want a child to have to suffer, just to be like you?

Of course, this is coming from a mother of two healthy children (thank God), so what do I know!

[wookie]

Oh BOY do I have an opinion.

I think withholding hearingaids or any other attainable medical aid for a child who is mostly deaf is child abuse, in that failure to provide medical care is child abuse. However, the article just might be phrasing that really, REALLY badly. If the hearing aids give no net benefit, then why bother?

And I would challenge that deafness and extreme short (or tall-ness) do impact one's quality of life. It sucks to be an adult who needs a stool to see your own kitchen counter. It makes driving nigh impossible. It makes a lot of thing that normatively abled people take for granted every day very challenging. I know a family where most of them are profoundly deaf (and partial deafness is all through my immediate family) and it's challenging. It's not that you have low quality of life it's that it makes certain things harder. Why would you choose to make something more difficult deliberately that could be avoided or left to chance?

Would you feel differently if the article focused on deliberately selecting an embryo for Downs syndrome because people with downs, having less intellectual capacity on average, therefore will percieve a less complicated and potentially happier world.

Im not very much in favor of screening against any but life threating dieases, either. As the article states, all children are blessings, a deaf child is a special blessing. You play the hand you're dealt and make the most of your cards. But *deliberately* choosing to handicap someone else, especially if it is your child, smacks of child abuse to me.

It's not the handicap, it's the deliberate forcing of it on someone who cannot possibly consent.

[Nikki]

Being a parent, I don't see how someone would want to do something like that. I want the best for my son and I could not picture anyone wanting to have their child face the same hardships as they have.

I was 60% deaf as a kid and still have trouble hearing. Sometimes I still have to read lips to know what people are saying. When my son had to be tubed at less than a year old, I was crushed. Then when he was tubed again at 1 1/2 I felt so bad for passing on my genes to him that most likely caused his ear problems.

I just don't get it.

[Colleen]

I saw a TV program about this a couple of years ago. I can see the reason for wanting to bring children into the world who can relate to you, but I'm also of the opinion that any child brought into the world should be loved, however they end up. I don't think it's a sign of a good parent if they're already trying to mould their child to their idea of perfection.

Screening for something that will end up killing the child at a young age is a good idea, but past that? Nah. Seems just like rejecting the child because it's the wrong sex, or has the wrong colour hair, to me.

[Brandy]

I am a parent of hearing impaired child and I went thru fertility treatments (IUI). It is very difficult to deal with some times but we handle it the best we can. I would give anything if he didn't have hearing impairment or developmental delays (and other health issues). I feel like God made him this way for a reason. I know I would never go this far to make a child deaf or not deaf. Nor would I withhold hearing aids if it would benefit the child. I feel like these parents are thinking of nothing but themselves. They want their children to struggle in life just to be like them. And deafness or hearing impairment does make life harder. YOu can be proud of who you are but this is going a little too far.
Of course, this is just my opinion.

[SandyC]

I'm kinda stunned. I didn't bring kids into the world to create a mirror to me, physically or emotionally. They are their own, not mine.

[Celeste]

I've heard of this before and it made me sad. Parents protect their kids--they don't put obstacles before them.

And where does this stop? Is an amputee father supposed to get his kid's leg cut off so Junior can be just like Dad? What about if a mother's in a car accident--does baby have to be in a coma too, so she can be just like Mom?

I can accept that "deaf culture" has flowered and that there is a deaf community for those who feel excluded from the hearing community. That's a positive reaction. But selecting disability? It's no longer a triumph over adversity--it's infliction of cruelty.

[Charlie]

Silly and selfish parents.

That's like saying that since I was born with a crippled arm...I should injure my kid's arm so she'll be more like me Oh please.

[MamaDoc]

As a special educator and a resident of metro DC, I have heard about the lesbian DHOH parents who have sought a deaf child (they may have 2 children by now). From what I remember, these parents desperately wanted a child that was of their culture, i.e, the Deaf Community. If you have hear any of the recent controversy at Gallaudet University and their rejection of a new president who was not (my words) Deaf enough, you have heard one part of the Deaf culture wars. For the members of the Deaf community there are defining characteristics that allow one to be Deaf and it moves beyond limited ability to hear ( = deaf).

My limited understanding draws a parallel to Caucasian families who choose to adopt from Russia rather than China because they want a child who will fit more easily into their (read “white”) culture. I adopted domestically, but I also wanted a child who would fit into my family and my world; I think that all parents want their child to fit in.

The important thing to remember for the Deaf community is that they do not see their lack of hearing as a deficit—it is a distinction, like skin color. As a black female, I wanted a child with a least one black parent who would therefore be black (or African American, if you prefer) and, from what I heard on local media, the Deaf family wanted the same—two Deaf parents who raise Deaf children.

That's my view from around the Beltway and from special education.

[jenny]

I think that there is also an element of fear here, in couples who share a condition like dwarfism or deafness, that they may not be "good enough" parents to a child who does not have that condition. I know that since my partner and I are both socially awkward people who suffered from shyness as children, we sort of wonder what we'll do with a perky cheerleader type, super popular child. Granted, I admit this is over-processing brought on by 2 years of infertility, but still, I worry I won't be able to relate to that child's life experience and that that will cause problems in our parenting. I can see how if I had a condition like dwarfism I might feel this same way, only more so. I don't know how I feel about PGD. I do worry about the slippery slope of choosing embryos for genetic traits that are not life-threatening, but I don't know where that slope starts.

[Val]

I could not imagine wanting to have a child with a birth defect. If you are going to do PGD, it should be to avoid a life threatening disease. If you are deaf or a dwarf and don't believe it's a disability, then let nature take it's course.

I have an aunt with polycystic disease of her kidneys & liver. This disease has a 60% chance of passing to children. She hopes with PGD that they can iliminate the disease in the next generation. If you don't have the disease, you don't pass the gene. She has had a kidney transplant and will, hopefully, get a liver transplant when the time comes. She and her sister (also has the disease) did not have children. One reason, is carrying a child was very dangerous. Two, they did not want to chance giving this disease to a child. My aunt is a great person and would have made a great mom. Too bad.

[Reese]

WORDGARITA to SandyC.

[parodie]

These are interesting cases, in part because if people were doing the opposite - i.e. screning to avoid deafness or dwarfism - we would be much less likely to object, and the objections would be much different. Yet there are significant parts of these communities which identify as just that, communities, and which do not feel that these are "defects" so much as "traits".

Furthermore, the line as to when screning for a "deadly disease" is ok vs over-the-top is difficult to draw: what about, e.g., Huntington's disease? After all, the disease doesn't show up before 40 or so - plenty of time to have a very rich, full life.

These are tricky questions.

[CharmingDriver]

I'm not sure it's either all bad or all good. That the technology is even available is testament to, and an extension of, the fact that most people who need medical intervention to have children will either research or exhaust all available treatments to have biological children, ie children like and of themselves.

I don't know that drawing a line in the sand about how these procedures can or can't be used is the answer because while I find the idea of designer babies disturbing, I'm not sure whose job it is to say when wanting children like you or of you isn't appropriate.

It's not a far-reaching leap from regulating to who and how technology is available to legislating the end result of any genetic testing that is deemed less than desirable by societal norms. The language in that particular article is more than a little unsettling.

[Shelley]

Oh boy... I want to be able to say that I don't feel entitled to an opinion because I've never had to face any of these choices and that I don't judge the other parents mentioned in the article for their choices, but I just can't. I simply cannot comprehend why any parent would knowingly make such choices for their children. I understand that both deafness and dwarfism are not life threatening conditions, and with respect to deafness, perhaps you don't miss what you never had. But to deliberately place physical restrictions upon your child's ability to interact and function within the wider community simply because you want their experience of the world to mirror your own seems unfair. Although this debate does remind me of the excruciatingly uncomfortable scene in the movie 'The Family Stone' where Sarah Jessica Parker's character is made to seem monstrously bigoted and insensitive because she can't understand why her boyfriend's mother wanted all her children to grow up gay. I guess we all have hopes and dreams for our children that are shaped by our own experiences of the world, but most of us will one day have to let go of these hopes and recognise our children as separate individuals whose wants, hopes and needs are distinct (though perhaps not disparate) from ours.

[bluepaintred]

im sorry I could not read teh whole way through. i understand wanting a child like me, but NO , no i want my kids to be better then me, to be smarter and healthier and happier, then i will have succeded as a mom. choosing a deaf child? choosing to have them neaver hear music? a bird sing? never hearing I love you? no im sorry i cant sit on the fence this is WRONG

[Lisa]

Hmm, I guess people have the right to do what they want.

Having a severly handicapped uncle who has lived a long and successful life, I've always felt that if I were to find out during a pregnancy that my future child had a non-life threatening handicap (i.e. Down's Syndrome) I would welcome that child with a full heart, the same as I would welcome any non-handicapped child. BUT that's not to say I would purposefully go out of my way to give birth to a child that would be challenged throughout their lives, simply to make them be more like me.

Every single person in my immediate family (myself included) wears glasses -- I hope that my kids will take after my boyfriend and have perfect vision. This isn't at all the same as being deaf or having dwarfism, but I still hope that my kids won't have to put on glasses in order to find the bathroom in the middle of the night.

[Leslie]

I think the key to understanding is that these people don't see themselves as defective.

As long as no one is telling me what kind of a child to have, I'll do the same for them. It's just another version of choice.

[Lil Liberal]

The point of deaf people wanting to have a baby that's deaf is the fact that Deaf people have an entire community- a language, grammar, arts, theater, humor, culture, cultural norms, etc. etc. Even a "music". To them, deafness is not a disability- and this isn't just some politically correct way of saying "it's a different-ability!"- the idea of hearing creeps Deaf people out to a large degree.

I'm deaf (little D signifies I'm not part of the community). I consider my deafness to be a disability because I interact primarily with hearing people. But if someone could snap their fingers and give me my hearing back, I'd think twice about it. I frequently remove my hearing aids to enjoy the silence and the way my ears hear the world around me. I like being able to sit in restaurants where people are yammering all around me- and hear nothing but the background music playing. Or being able to walk in Midtown Manhattan and hear nothing but the whispers of people that pass close enough, and the whisk of the tires on the pavement.

So there's the following ideas behind the whole selectively choosing a deaf child:

1- The Deaf do not consider deafness a disability

2- In the Deaf community, it's actually the hearing participants (children of Deaf parents, spouses of Deaf people) that are outsiders/left out/oddly different and even somewhat disabled.

3- All (most?) parents want their child to be a part of their community. Often even parents that are part of a community that is discriminated against, or that doesn't necessarily have all the doors of society open to them. (Ask minorities, etc.) Look at adoptions- everyone wants to adopt a kid that could have been theirs by birth. Or people that are looking for sperm/egg donors- again, the majority wants babies that are "like" them in the ways that they identify with.

Since the Deaf do not view deafness as a disability, it doesn't quite compare to the things we suffer through- like having to wear glasses to find the bathroom in the middle of the night.

It goes beyond "dont miss what you never had" on so many levels.

[Dea]

ohhhh... that's tough. I think that Leslie makes a very valid point. I don't think it's fair that we judge people for desicions like this. I guess I could argue that the parents are ensuring that their children are born with medical issues, which be painful for them later in life, but the same could be for me. My husband and I are very fair, and there is a lot of skin cancer in our families, so if we have a child s/he will also be prone. But we can teach our children about it and they can minimize the risks. Also since I have never been anything but fair, I don't know what it's like to not always be slathered in sunscreen. Likewise the deaf child will never know what his life could be like if he could hear. Also these children are loved and welcomed into a community. I think the argument is a tough one, ethics never has a right or wrong answer.

[jeanie]

Wow.

It is a tough one - I think that when technology like this becomes available you will reach areas of grey such as outlined in the article.

Just imagine for a moment that you have lived your whole life being "different" - and you have finally found others as different as you and you find a whole different community just like you and you go to have a child. Would you like your child to automatically become part of and accepted by the community that accepted you as you are, or automatically accepted by the community that shunned you?

And as technology becomes more advanced, I wonder what other quandaries will emerge?

And I also wonder when the legislators will get in on this act - brave new world breathing down our necks - hey, we only need x:y male:female ratio to survive as a species, how long before sex is allocated? Race? Height? Sound aryan yet?

[Monica]

I'd like to echo Lil Liberal. Being deaf or a dwarf is not inherently a disability. Those traits become disabilities when the world is constructed for and geared towards people of average height or who hear better, which our world is. I think that the use of technology to eliminate such non life-threatening traits from the population is a dangerous path to take. And it lets the "mainstream" culture off the hook in terms of making the world accessible for everyone. I think that there is a real danger in eliminating the rich diversity of human life. I can also see the use of technology to choose to have a "disabled" child as a response to preserve the diversity of human life in the face of many folks who will choose to eliminate embryos who might manifest the traits in question.

[Tyanne]

Okay, I don't know. I think that you would want your child to be "normal" of course there are many different definitions of normal for different people. So I just don't know. For me personally, I would like my child to be my normal, which is healthy, average, height, and hopefully no medical problems that would make their lives hard, or painful. But if they did have an "abnormality", I would love them just the same.