This is an old opinion article, but I think that it makes a good point (and I almost cried while reading it too).


The Abortion Debate No One Wants to Have
Prenatal testing is making your right to abort a disabled child more like "your duty" to abort a disabled child.

By Patricia E. Bauer

Tuesday, October 18, 2005; Page A25

SANTA MONICA, Calif. -- If it's unacceptable for William Bennett to link abortion even conversationally with a whole class of people (and, of course, it is), why then do we as a society view abortion as justified and unremarkable in the case of another class of people: children with disabilities?

I have struggled with this question almost since our daughter Margaret was born, since she opened her big blue eyes and we got our first inkling that there was a full-fledged person behind them.

Whenever I am out with Margaret, I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don't know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent.

Imagine. As Margaret bounces through life, especially out here in the land of the perfect body, I see the way people look at her: curious, surprised, sometimes wary, occasionally disapproving or alarmed. I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living.

To them, Margaret falls into the category of avoidable human suffering. At best, a tragic mistake. At worst, a living embodiment of the pro-life movement. Less than human. A drain on society. That someone I love is regarded this way is unspeakably painful to me.

This view is probably particularly pronounced here in blue-state California, but I keep finding it everywhere, from academia on down. At a dinner party not long ago, I was seated next to the director of an Ivy League ethics program. In answer to another guest's question, he said he believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure. (When I started to pipe up about our family's experience, he smiled politely and turned to the lady on his left.)

Margaret does not view her life as unremitting human suffering (although she is angry that I haven't bought her an iPod). She's consumed with more important things, like the performance of the Boston Red Sox in the playoffs and the dance she's going to this weekend. Oh sure, she wishes she could learn faster and had better math skills. So do I. But it doesn't ruin our day, much less our lives. It's the negative social attitudes that cause us to suffer.

Many young women, upon meeting us, have asked whether I had "the test." I interpret the question as a get-home-free card. If I say no, they figure, that means I'm a victim of circumstance, and therefore not implicitly repudiating the decision they may make to abort if they think there are disabilities involved. If yes, then it means I'm a right-wing antiabortion nut whose choices aren't relevant to their lives.

Either way, they win.

In ancient Greece, babies with disabilities were left out in the elements to die. We in America rely on prenatal genetic testing to make our selections in private, but the effect on society is the same.

Margaret's old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren't being born anymore, he says.

The irony is that we live in a time when medical advances are profoundly changing what it means to live with disabilities. Years ago, people with Down syndrome often were housed in institutions. Many were in poor health, had limited self-care and social skills, couldn't read, and died young. It was thought that all their problems were unavoidable, caused by their genetic anomaly.

Now it seems clear that these people were limited at least as much by institutionalization, low expectations, lack of education and poor health care as by their DNA. Today people with Down syndrome are living much longer and healthier lives than they did even 20 years ago. Buoyed by the educational reforms of the past quarter-century, they are increasingly finishing high school, living more independently and holding jobs.

That's the rational pitch; here's the emotional one. Margaret is a person and a member of our family. She has my husband's eyes, my hair and my mother-in-law's sense of humor. We love and admire her because of who she is -- feisty and zesty and full of life -- not in spite of it. She enriches our lives. If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth.

What I don't understand is how we as a society can tacitly write off a whole group of people as having no value. I'd like to think that it's time to put that particular piece of baggage on the table and talk about it, but I'm not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.

And here's one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what's driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families. The abortion debate is not just about a woman's right to choose whether to have a baby; it's also about a woman's right to choose which baby she wants to have.

The writer is a former Post reporter and bureau chief. Her daughter, Margaret, is a student in the post-secondary program at the Riverview School in East Sandwich, Mass., from which Margaret received her high school diploma in 2004. She also takes classes at Cape Cod Community College.

http://www.washingtonpost.com/wp-dyn/con...01311.html

There is a harsh reality too for women who are facing a doctor and being told to make a choice after getting a result that their child may have downs.

They can think now 'I have never even seen a child with downs around here, it must be terrible'.
As the people with downs disappear there are less and less to make any kind of positive impact.

Like those adverts when they show an endangered species eg bengal tiger (usually asking for money to save such animals), when in the past people were killing tigers through fear and ignorance.

*sigh* I hate humanity. I really do. Sometimes I wish a spaceship would land so I could get outta here.

The more I read about what they want to do to all of us differents, it becomes more and more opaque to me how they can say there is anything wrong with us.  My sister and I have always had a very close connection, and there's hardly a thing she misses.  Her level of functioning is almost normal anyway, and she's not nearly as miserable as I ever was, so why would you want to take that away?  I know that there is nothing wrong with the way she is.  

There has never been a good response.  It's always, "Oh, I'm so sorry" or it's those funny looks that happen when something threatens their perfect universe.  That say we're something to be pitied, that neither of us is worth as much as they are because we're abnormal.  

This only confirms that solitude is the greatest blessing.  What other response is there to a world where even the most devoutly religious have no morals?

Also, antenatal results are not always accurate.  When my sister was pregnant with my neice, they did some tests that "indicated" she may have Downs Syndrome.  Luckily for my neice, my sister went ahead and had her.  Tirri had NOT got Downs, she in fact is extremely bright and consistently tops her year at school.  
Alison

http://www.altonweb.com/cs/downsyndrome/...sndsc.html

Down's Syndrome association.  This is their policy on prenatal genetic testing.

"NDSC Position Statement on Prenatal Testing and Eugenics: Families' Rights and Needs Eradicating Handicap Print this page

Down Syndrome News
The Newsletter of the National Down Syndrome Congress
Vol. 17, No. 7
September 1994, p. 3    Prepared for and Approved by:
The Professional Advisory Committee, National Down Syndrome Congress
August, 1994
There are concrete position which disability rights groups along with other progressive groups can take to combat the current eugenics movement. These positions, which in no way involve the movement in the debate over whether a woman should have a legal right to abortion, were originally developed and proposed by Lisa Blumberg in the Disability Rag & ReSource (Jan-Feb 1994) and reprinted in the DSN (Vol 17, No 7).
Based upon those proposals, the NDSC Board of Directors has adopted the following position statement:

What are families' rights concerning prenatal testing?

   1. The decision whether to have prenatal tests must be solely that of the pregnant woman regardless of the woman's age, reproductive history or disability status.
   2. All expectant parents should be informed as to the purpose of the different available prenatal tests as well as given information on the risks, limitations and expense of the tests, the manner in which these tests will be performed, and when during the gestation period the results will be available. Consent and refusal forms must state that a decision to forego prenatal tests will not subject either the parents or the future child to loss of any medical care, insurance, legal benefits or community services that they would otherwise be entitled to. Legislation should be drafted as appropriate.
   3. The results of all prenatal tests must be strictly confidential and may only be released to a third party with the parents' consent.
   4. All women regardless of age, reproductive history or disability status must be given the absolute right to continue a pregnancy after prenatal diagnosis. Legislation should be drafted as appropriate.

What do families need to make informed choices?

   1. Disability groups should prepare packets of up-to-date information to be offered to all parents who learn that their fetus has a disabling condition. These packets should contain:
         1. Information that seeks to dispel common misconceptions about disability and present disability from the perspective of a person with a disability;
         2. Information on community-based services for children with disabilities and their families as well as on financial assistance programs;
         3. Materials on special needs adoption; and
         4. A summary of major laws protecting the civil rights of persons with disabilities. People with disabilities and parents of people with disabilities should be available to talk with future parents.
   2. All medical students should be required to take at least one course in political and social issues of disability and all practicing physicians should be required to take such a course as part of their continuing education requirements. All genetic counselors, as a part of their specialized training, must participate in an activity that will give them contact with persons with disabilities in nonmedical settings.
   3. Family strengthening initiatives such as parental leave, part-time and flextime work, expanded child care alternatives, comprehensive health care programs and programs assisting low income families must be supported. Parenting a child with a disability will become a more viable option for more people if society provides more supports for parents in general.

How should society address the issue of prenatal testing and eugenics?

   1. Laws regulating abortion should be disability neutral.
   2. Non-pejorative, people-first language should always be used when referring to persons and potential persons with disabilities. The term "defective fetus" is unacceptable.
   3. Wrongful life suits are inherently discriminatory against persons with disabilities and should be prohibited. Wrongful birth suits should only be permitted with children who are disabled if they are permitted with children who are nondisabled. "

Someone on another forum once posted about a tee shirt they own:

MY ONLY DISABILITY
IS YOUR ATTITUDE!

Up until last night, I've always supported a woman's right to choose abortion.  For the first time in my life, however, I'm now questioning that stance.  To think I'd ever agree with the Pro-Lifers!
Alison

Peter Costello, Treasurer of Australia once said this about babies

Quote from Tony Attwood, AS expert

I've done my national duty! [Lili Marlene salutes the flag while computer-obsessed offspring start brawl over who gets to use the internet first]

Alison, I am with you.  I am rapidly finding myself reversing my pro-abortion stance.  

When a pregnant woman has the AFP test, the whole process is glossed over as this is what is expected and normal.  Very little counseling is given, just vague information and perhaps a pamphlet is handed over that is never read.  Women tend to trust their doctors and don't think beyond the test.

I hate to think how many abortions occur now because of faulty AFP (for Down's and spinal bifida) results.  The number of faulty positive results are staggering....and of course, many of these results include human error.  (Certain stats are required to be entered, like father's date of birth....ooops, wrong year, wrong results).  My second pregnancy was filled with anguish because of false results.  I delivered a healthy baby boy one month early.

I believe to successfully confront the new genetic for autism testing two things must be done.  First, women everywhere need to be educated and encouraged not to be sheeple.  It's only as we get beyond our child bearing age we become wiser.....and that is far too late.  Second, what the public thinks when they hear the word "autism" must change.  It must for any campaign to be successful.  Up until recently, when I heard the word autism,  the autistic with the most profound symptoms came to mind.  Unfortunately, I believe my prior limited knowledge represents the majority of public perception.  

Change the face of autism and I believe there will be more results.

Dixie

Gee, sounds like my house!  :lol:

i'm pro life myself, but i heard some pro choicers against abortion based on any kind of genetic diffrence, so that could help us out.

and mabye we can talk to some older autism parents about their experince and how it was benifical for an autistic child.

This is already happening on Autism Hub.  It's a group of bloggers that includes parents, autistic adults, and autistics who are also parents.  So far, the dialogue among these bloggers has been very helpful in changing parents' views of autism for the better.

There is already a term ready-made to describe the attitude behind this "prenatal testing".  Come, everyone, say it with me:

Lebensunwerten Lebens

It was a very popular term in German from about 1933 to 1945.

I don't speak a word of German - what does the term mean?
Alison