Eugenics in today’s society

May 1, 2008 Kyron 16 Comments

I posted about Trig Paxon Van Palin the other day. He is the beautiful son of the Governor of Alaska and her husband. In their press statement on the birth of this their 5th child, the stated that:

We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would Ifamily infant Eugenics in todays society have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.

No related posts.

Categories : Advocacy, News, Political

Currently there are "16 comments" on this Article:

  1. Deborah says:

    My daughter, Ashley, is very ‘different’, and we celebrate those differences every single day. I can’t imagine what my life would have been like without her. Knowing her and loving her has made me a better person. I wouldn’t change one second – not even the very difficult ones.

  2. NTE says:

    I may not agree with every single one of your points, but I think you do make valid arguments for all of them. The one that resonated most with me, however, was the idea that doctors’ and the medical community as a whole’s bias toward ‘normal’ children would be such a determining factor in the rate of abortions for children with ‘differences.’ Reading it, knowing it to be true (that the medical community doesn’t exactly understand or value the lives of those who are different, particularly if they have medical challenges) makes me wonder how much of the ‘pro’ side is even presented to would-be parents. Either way, it’s such a difficult decision, but at the very least, it should be an informed one.

  3. “I said in Committee that we were not talking here about disabled human beings, but about some grossly abnormal human beings; many of those whom I have seen bear little resemblance to human beings.”

    The words of Baroness Tonge, Liberal Democrat peer, spoken in the House of Lords during a debate on amending the UK abortion act to remove discrimination against foetuses with disabilities in January of this year. To read her speech in full, and to see how we responded, click my name.

  4. DotComMom says:

    I love the tone, honesty and kindness of your piece. You covered this subject with the conviction that is so necessary, yet with a total absence of judgementalism or condemnation. Well done!

    We have something in common as I touched on the same subject for my own BADD post today. :)

    DotComMom

  5. Ruth says:

    I think your post really celebrates the lives of children with disabilities – and speaks volumes as to how they enrich our world – their families, of course, but much more than that.

  6. Barbara says:

    My hearty compliments.

  7. Kyron says:

    Thank you all so very much for your thoughtful comments. I appreciate your visiting as well as your feedback. I am glad especially that no one felt it to be judgmental because without question I do NOT want to judge anyone and the choices they make for their lives. I merely think that the choices being made should be as informed a choice as possible.

    All the best,
    ~Kyron

  8. Terri says:

    I also posted on this topic for BADD. Any “ism” in people with power/authority can be a very dangerous thing.

  9. Emily says:

    This is a wonderful contribution to BADD and an excellent post. This is such a touchy subject and so hard to address without polarizing either side of the abortion debate; you have done a remarkable job of not taking a stance on abortion, but addressing specifically the ethical concerns presented inherent in prenatal testing.

    I really respect your ability to do this – if everyone could we might be able to have more productive discussions about ethics in genetic testing and the impact it can have/ has had on society.

    Kudos!

  10. Lynn Goodfriend says:

    David Tolleson is my brother. It is wonderful to know that someone HEARS what he says. He is full of compassion, and he knows what he is talking about…he’s got a good head on his shoulders, even for a big brother. You wrote a wonderful article. You sound like a great mom.

  11. Steph says:

    Thank you. I share your view completely.
    Well done. Truly.

  12. Rosalee says:

    Hello,
    Well I read your article and while I think you make some excellent arguments, I think that you may be confused about the full meaning of the term eugenics. Personally I have studied the subject intensively and I have found that unless you see both sides of this concept you can not justly write about it as a whole. What I am referring to is the contrast between Positive Eugenic and Negative Eugenics. Both make up the theory of “eugenics” as a whole and while people are quite familiar with Negative Eugenics (the Nazis incorporated some of this approach into their actions) very few I find are familiar with the other side which also has it’s downfalls but has a surprising bit of merit as well.
    Let me explain briefly here for those who do not know, the difference between the two types of Eugenics. Negative eugenics approaches the concept of improving the human race from a perspective of afterthought. That is to say after a child has been born ( or a fetus discovered to have) a medical issue then it is time to terminate this life that has already been created. Or if that person has reached adulthood then it is the right action to sterilize them to prevent another individual from being born less than medically sound. This response is of course both inhuman and morally wrong. Positive Eugenics however takes a different approach, it comes from the perspective of preventative measures to ensure that more individuals are born medically sound, both mentally and physically. This eliminates any opportunity in the future for a parent or doctor to have to make the decision as to weather a life that has already been created will be allowed to continue to live. Rather it improves the chances that every birth can result in a fully healthy child.
    I would hope that in the future those who would seek to comment on a concept such as eugenics would educate themselves fully and understand that while every theory has it’s downsides there is generally a kernel of knowledge that may be worth something especially if put into modern context.
    Such is the case I believe with Positive Eugenics, though it is a flawed concept there is something we can take from it, that being that with current methods of genetic testing and with our myriad of other modern methods of determining the risk of genetic conditions, who wouldn’t want to examine the risks before hand and therefore ensure they had a healthy child.

    Now on another point I have a question for those others who left comments here. It is a subject of debate that I have often noticed on blogs such as this. The question is “if given the option with your next child would you choose one who is as you put it ‘special’ or would you choose a child who is medically sound in every way?”

    I have just one more comment to make, that being that I object to the use of the term ‘special’ for a child who is disabled in someway or another because I think that rather than stating that child is an equal to other children which I think is the goal of the terminology, it rather elevates that child above others or at the very least sets them aside in a category of “different from others”. This for me is upsetting because I believe that the parents are inadvertently changing the the light that the world sees their child in. Also I believe all children are special and are equally a blessing, none more than others regardless of what health status they possess.
    I hope that you will consider my input and if you like you are welcome to respond/ my email is as follows:
    Rosaleehamilton@gmail.com. I would be happy to hear you thoughts and answer any questions you may have.
    Rosalee

  13. Catherine says:

    I found your post because I am researching eugenics for a paper I am writing.
    You raise interesting points and I am glad I read this. My one question for you or any parent who makes the choice to continue with a pregnancy knowing their child will face a lifetime of health issues and high health costs is this – what happens to that child should something happen to you and/or your spouse? Should the child outlive you, what happens then? This is in no way a criticism, I am sure it is a question that many parents have to ask themselves. How do you provide for the child that cannot provide for itself?

  14. admin says:

    Catherine,

    I’m glad you found it as well. I have been so consumed with taking care of my daughter these days that I haven’t been blogging like I wish I had been.

    I obviously can’t speak for every parent. I can’t honestly even completely speak for myself. I guess I’d do what my logic professor would have done to me and answer with a question.

    You have a child, you have the most beautiful, perfect child possible. They are happy, healthy, thriving and wonderful. Then one day something happens. For our purposes the something doesn’t even matter. What matters is what the something does. It leaves your perfect, happy, healthy child changed. Not a little bit changed, catastrophically changed. They have brain damage, they have physical limitations. They will never be able to function in society as we know it without some kind of assistance. Clearly your child will outlive you. What happens then? Knowing this is going to happen would you go back 10, 12, 15, 17, 28 years and change everything and not have that child? Has it changed the value and impact your child has in your life? In the lives of those around you – family, friends?

    You plan. You make the best choices you can to make sure your child has friends and associates that can assist them. You do what you can to plan for them financially. The reality is that maybe we’re in a slightly better position. I have known for more than a decade that my daughter would need assistance for the remainder of her life. It has allowed me to methodically start a plan that gives her the greatest potential whether I am here or not.

    For what it’s worth, your question didn’t come off as criticism, but rather a reasonable quest for understanding. Honestly, the reality is if you are a parent, whether your child has special needs or not, you always have to ask is how your child would survive if you were not around. The difference is the level of planning required.

    I hope this in some way helps. I would be very interested in the outcome of your paper :) Best of luck.

  15. Ben Seeley says:

    I am a person with Asperger’s Syndrome, diagnosed just last year! I am shocked at the medical establishment’s bias towards ‘normalism’, whatever that may be, and that couples will abort their child just because he or she has a disability – the point is to love your child whatever disability he or she has! It’s lucky that my parents love me, because if i had been around during the Second World War, I would have been sent to the gas chambers or aborted immediately!!!

  16. Karen says:

    Rosalee,
    I find it fascinating and I do not posess the knowledge on this topic. When you discussed positive eugenics and ensuring a medically sound baby does this include children who are born into poverty? Doesn’t being poor come with some health risks that could include diet, housing or social status? Does this mean that potential parents from certain segments of society will be discouraged against giving birth to children based on the theory that their child will not be medically sound?

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