The Abortion Debate No One Wants To Have

[NATO AIR]

I'm horrified at this; this is what our society is coming to?

http://www.washingtonpost.com/wp-dyn/content/article/2005/10/17/AR2005101701311.html

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.

 

[Annie]

Eddie, you are speaking to my heart. My sister, Mary Beth was Down's syndrome. She beat my mother to heaven by about a year.

She was 'profoundly deaf', whereas I am only 'deaf.' Mary Beth got all the worst of the gene pool. Worst hearing, eyesite, teeth, hair, etc. Yet, she always seemed happier than the rest of us. She always has a 'boyfriend.'

She was the oldest of us 3 siblings, I was the 'middle'. I guess since she was over 5 years older, I was 'co-oldest.' I guess I really was. But really, since she was unique, so was I in our family. I didn't know of her until I was 8. I found out about Mary Beth, when I asked my mom if Santa was real. My mom told me the truth of Santa, while also telling me about my older sister at the same time. Needless to say, Christmas has never been the same for me.

Seems my parents nearly divorced after she was born, my mom wanted to keep her home; her doctor, her sister, and my father disagreed. She was sent to an 'infant home', then to Dixon, IL for mentally retarded as she got beyond the infant stage. I guess with my being conceived, I saved my parents marriage, along with a good obstetrician. My brother, less than 18 months later, sealed that deal.

Fast forward to late 1970's. Dixon is shut down. Mary Beth is sent to a 'facility for severely retarded, with hope of group home placement.' It's PARC. A wonderful facility where Mary Beth is finally, at nearly 30 years old, diagnosed as profoundly deaf. They are able to teach her sign language, which I learned. 10 years later, they arrange for cochlear implants, which make speech possible. (Just imagine if she had had that as a child?)

For the next 10 years, she is in a group home. At the age of 45, she is diagnosed with Alzeimer's. No one in my family, the low point on both sides of family being 82, has had Alzeimer's. For 3 years, she fades away, though she did recognize me the last time I visited, she did not care that I put the flowers on the wrong side of the bed. She was too tired, too confused to care. In a way, this was even harder than the loss of my mom, who did not go 'quietly into the night.'

 

[NATO AIR]

wow. I had no idea....

I believe a life lived is far better than a life terminated. She seemed to have had a fulfilling life, and that is the most we can all hope for.

 

[Mr. P]

Nothing new here. Amnio synthesis (SP) has been around a long time, and used to ID severe defects. Abortions have been taking place based on these results a long time.

 

[Annie]

Nothing new here. Amnio synthesis (SP) has been around a long time, and used to ID severe defects. Abortions have been taking place based on these results a long time.

You know P. She had a good life, as good as society allowed. She had lovers.She had a job, and I will testify that she left behind others that morned her passing. Her lovers and family. FY.

 

[fuzzykitten99]

wow. I had no idea....

I believe a life lived is far better than a life terminated. She seemed to have had a fulfilling life, and that is the most we can all hope for.

i agree. I refused the testing the first time, because I figure I will love the child no matter what, and they don't even test until about 12-15 weeks, so the baby is much more developed than at 6 weeks. i won't do it this time either. I will deal with the hand I am dealt. my baby will have a mom and dad to love him, regardless of any real imperfection.

even so, those tests are only about 60-75% accurate. there are too many false positives to make it worth the worry. What if you aborted and the test had been wrong? There is no way you would know.

 

[dilloduck]

i agree. I refused the testing the first time, because I figure I will love the child no matter what, and they don't even test until about 12-15 weeks, so the baby is much more developed than at 6 weeks. i won't do it this time either. I will deal with the hand I am dealt. my baby will have a mom and dad to love him, regardless of any real imperfection.

even so, those tests are only about 60-75% accurate. there are too many false positives to make it worth the worry. What if you aborted and the test had been wrong? There is no way you would know.

I can't even begin to count the number of "disabled" people I have met that I would exchange with "able" people in a heartbeat. An unusually cruel act,indeed.

 

[NATO AIR]

I can't even begin to count the number of "disabled" people I have met that I would exchange with "able" people in a heartbeat. An unusually cruel act,indeed.

I'm sorry that made me laugh in the middle of this rather serious discussion. How true.

 

[sitarro]

You know P. She had a good life, as good as society allowed. She had lovers.She had a job, and I will testify that she left behind others that morned her passing. Her lovers and family. FY.

Who knows why she was put here to live life in such a different way than the rest of us. I would guess that she served as an example of a true love for life to everyone she met. She certainly seems to have had a very positive effect on you Kathianne, you are a better person because of her presence in your life. I only know you from your posts but I sense that you are not only a wonderful, compassionate person but a great teacher as well.

While people with disabilities can bring out the worst in some people, their more important mission is to reveal the best in us. I am sure she is watching over you with pride in knowing what she was able to do for you.

 

[Annie]

Who knows why she was put here to live life in such a different way than the rest of us. I would guess that she served as an example of a true love for life to everyone she met. She certainly seems to have had a very positive effect on you Kathianne, you are a better person because of her presence in your life. I only know you from your posts but I sense that you are not only a wonderful, compassionate person but a great teacher as well.

While people with disabilities can bring out the worst in some people, their more important mission is to reveal the best in us. I am sure she is watching over you with pride in knowing what she was able to do for you.

Thanks Sitarro. My mom told us that 'people like Mary Beth' were angels sent by God to show the rest of us what it's like to 'just trust God.' I don't know about that, but there certainly was an innocence that was not lost at 20, 30, or 50.

 

[Gem]

Kathi, thanks for sharing a bit of your life with us. It is always fascinating to learn a bit more about eachother...especially when what you are sharing is so poignant. I minored in American Sign Language and was planning on being an Interpreter or an Educator of the Deaf and Hearing Impaired, so your story held an additional bit of emotion for me.

As far as the original post is concerned, the concept of a "false positive" has always been terrifying to me. I have a friend who was tested and the doctor told her that "without question" she was going to have a baby with Down's Syndrome. She debated having an abortion, she was single and fairly young, but in the end decided that she simply couldn't have lived with the knowledge that she aborted her baby because it wasn't perfect and she might have to struggle a bit more than she would have liked. Dalton was born happy, strong, and healthy...and did not have Down's Syndrome. The doctor's response was..."Oh...well, sometimes the tests are innaccurate. You must be relieved." Um, yea.

No one dreams of getting pregnant and giving birth to a beautiful baby boy or girl....with a disability. But, I have a Master's Degree in Special Education...so I have worked with MANY parents of students with disabilities ranging from ADHD to severe multiple disabilities....and guess what...not one of them wanted to talk about how much easier and happier their lives would have been if they had had a "normal" child. At least 90% however, wanted to speak IN DEPTH about how special and miraculous their children were, how much they had learned from them (even those on feeding tubes who couldn't speak or move), and how their children had effected their lives for the better.

So what kind of society will we become when women "choose their babies." What kind of people will we be, when aborting babies because they aren't perfect becomes the norm?

 

[MissileMan]

For the sake of argument, what if they developed a vaccine that would guarantee that there would never again be a child born with a disability like Downs Syndrome? Would it be unethical to prevent the births of disabled children with a vaccine?

 

[Hobbit]

For the sake of argument, what if they developed a vaccine that would guarantee that there would never again be a child born with a disability like Downs Syndrome? Would it be unethical to prevent the births of disabled children with a vaccine?

How is that even relevant? "Curing" the disease by killing everyone who has it is like solving employee relations problems by firing everyone. I don't see how that question even relates to this argument unless you're somehow presenting a comparison between curing a genetic disease and killing everyone who has it. The point of the argument is that all life is worth living, no matter how horrible you *think* it is.

 

[LuvRPgrl]

For the sake of argument, what if they developed a vaccine that would guarantee that there would never again be a child born with a disability like Downs Syndrome? Would it be unethical to prevent the births of disabled children with a vaccine?

WEll, maybe thats an arguement we should, for now, forsake

 

[5stringJeff]

For the sake of argument, what if they developed a vaccine that would guarantee that there would never again be a child born with a disability like Downs Syndrome? Would it be unethical to prevent the births of disabled children with a vaccine?

If the vaccine was able to be administered without causing anyone's death, I suppose it would be ethical.

 

[MissileMan]

How is that even relevant? "Curing" the disease by killing everyone who has it is like solving employee relations problems by firing everyone. I don't see how that question even relates to this argument unless you're somehow presenting a comparison between curing a genetic disease and killing everyone who has it. The point of the argument is that all life is worth living, no matter how horrible you *think* it is.

There have been millions, maybe billions, of research dollars spent to attain an end to birth defects. IMHO, until they can cure those defects in-utero, through some sort of gene therapy, all of the tools available, including abortion, should be employed to prevent children from being born with serious birth defects.