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Registered: 04-19-2006
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Sat, 04-05-2008 - 12:33pm

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/content/article/2005/10/17/AR2005101701311.html





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iVillage Member
Registered: 04-19-2006
In reply to: cl_misa101
Sat, 04-05-2008 - 12:36pm

Ok it is rather old but I thought I would post it anyways.

For me the biggest issue I have with it is that it reads as if all kids with downs could achieve what their DD has. They completely leave out that there are varying degrees of disability including those who need 24 hour care their whole lives and that there is no way to know the degree of severity until after birth.





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iVillage Member
Registered: 04-10-2003
In reply to: cl_misa101
Sat, 04-05-2008 - 1:25pm

Well, I answer with an old post of mine on this issue:

Being PC, I will say that it is the woman's choice as to whether a pregnancy will proceed. When fetal anomaly figures into it~ I will stand by the original determination: it is the choice of the woman, and ideally she has input from her spouse/SO, when making this decision.

Each woman/family needs to take the responsibility to research the particular disability that is being suspected or diagnosed in her pregnancy. With T21, there is no way to ascertain the severity of mental retardation- some may be mild, and some may be severe, and some may be moderate.
Whether one wants to acknowledge it or not, there are many factors that must be considered: resources as far as WHO is going to care for the child if he/she needs 24/7 care. Many daycares do not accept disabled children or require many times higher the tuition. A family may not have the financial wherewithal to either keep one parent home to care for the child, or the resources to otherwise pay for that care. Then we must enter into the Special Needs Equipment category. Customized wheelchairs for those with skeleto-muscular disorders run into the thousands of dollars, with county agencies usually topping out a fraction of the cost, in available aid. These kids may also need bath chairs -upper hundreds, travel chairs, $1500 and up, special beds (friends just had to have 2 made for their sons) in the thousands, car seats $500 and up. Therapy ranges from $150-300 per hour- multiply that times physical, occupational & speech each 3x weekly for an hour. 9 hours at say $200.00 an hour means $1800 per week. Check your insurance coverage- it usually limits at about 10 visits or less per year. I have seen families sell everything to pay for these kids' needs and have to go on Welfare so the child can receive Medicaid to pay for medical needs~ and that is sub-standard care at best.
Still considering the child's needs- watch the child grow to be a full-grown adult. If he/she cannot care for himself, and the parents cannot, you will need to consider a residential facility. Now that's going to run upwards of $50,000.00 per year. So go ahead & get him/her on Medicaid. Then wait for months as a cavity hurts them before they can get approval for a dental check. Watch for bedsores to develop in those who are non-ambulatory. And watch those with the mentioned cerebral palsy develop painful contractures around all of their joints because they need a couple of hours of PT & OT per day, and the state doesn't cover, nor give it.
Then you have to make sure you never lose your insurance coverage~ forget private coverage- that handicap makes you highly undesirable to insure. So someone had better keep a job with good coverage. Oh, and please don't cap out the maximum amount allowed by policy~ usually somewhere around a million or more. Doesn't take long in a NICU or PICU to run it out either~

Aside from the child's needs financially, and medically, look at the impact on the rest of the family. You may not be able to just pack the kids in the car & attend the school play. Special needs kids often have special medical needs, or are sickened more easily. Winter used to shut me in for months on end. You have kids who get sicker due to their low muscle tone in the chest & abdominal region- more respiratory illnesses, those who for the same reason, have gastro-esophageal reflux and vomit frequently after feedings. Those who cannot tolerate heat, nor cold. The other kids don't get the same benefit or attention. I remember having to wait a day to get my youngest to the doctor for an ear infection because Nick was in a body cast following a hip surgery, and I could neither lift him (30lb cast + 40lb child) at all, nor could he fit in a regular car (SPICA casts keep the legs spread about 24" apart at the ankle). So sporting activities are either missed, or mom can't watch, as are swimming lessons and a myriad of other things most families like to do with their children. Usually, after the things a special child needs paid for are purchased, there's not much left to give the other children in the family. Some families, you can see the resentment in the eyes of the *normal* children- who feel like they are short-changed by the attention given the *special* child. When the special child needs to be hospitalized, all normal life stops in that family, and crisis mode is entered. A caring parent will stay with the child needing hospitalization- because trust me- you don't want to rely on the care they get there if they cannot ask in no uncertain terms for it themselves. So, life goes on hold for the other members of the family while a parent, usually mom, stays at the hospital.

And I have noticed through my interactions with many other families that were in this situation, the mother is usually the 24/7 care provider, while Dad works. It is on her shoulders that all of this falls upon. She is the one feeling torn in 5 directions at one time. And she is the one who tends to lose themselves in the health & care issues of the special child.

If that child is severely affected, there will come times she fears he/she will die- and one day he/she might. No other parent can know the desolation, pain, anger, sadness, relief, guilt that a parent who loses a handicapped child goes through. Your arms ache to hold your child again. It is a physical pain in your chest cavity. And yet, there is a measure of relief that they no longer suffer, no longer hurt. And there is guilt that you feel that relief- the relief at knowing you won't become too old or weak to care for them, relief that you will not ever need to place them in a rathole of a residential care facility, guilt at the relief that some of your pain and anguish has been relieved, guilt that you are happy your other child(ren) can live a more normal life. Anger at the universe that your child was not healthy, and had to die, anger at yourself for failing them.

For these and many reasons, I feel that I would be the ONLY person qualified to make a choice to gestate or terminate a pregnancy of my own that was diagnosed with fetal anomaly. And likewise, I can neither make that choice for another family in a similar situation. Only they can assess their strengths, weaknesses, resources & capabilities. But I will support the choice they make, whether it is to continue the pregnancy & give birth or to abort it. It would be easy if you could make it all either black or white. But I feel that those who do so, are either intentionally ignoring the many other factors or just cannot fathom them.

I would, to those people who wish to deny the choice to terminate for fetal defects, assert the challenge to either adopt one of those disabled/handicapped children no one else wants, or agree to support them in their family unit until they die: assure that their physical needs are being met when Mom & Dad cannot, assume total financial responsibility for their medical needs & costs, including insuring them. And provide that 24/7 hands-on care when , for any reason, their parents find themselves unable to do so.

Until then, the right to a fetus with disabilities to be born & perhaps survive, should rest solely with the individual most decidedly impacted: the woman who is pregnant.

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iVillage Member
Registered: 06-17-2007
In reply to: cl_misa101
Sat, 04-05-2008 - 1:39pm

Oh, I've got way more issues with it than yours (although yours is a very good point, Misa).

"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."

One, this is very likely a hasty generalization. Otherwise, what horrible people she must be around that "most" of them have told her outright she should have aborted, and that her child should not be alive. I don't believe people really have said that, so this claim is bunk IMO.

Two, it's a straw man. It's like the argument I used to have with my sister, when she'd say she was trying to have another baby and I'd encourage her to think of how she was already not able to support the others. She'd say, "I guess you think that J and W should never have been born, then?" Thinking that someone may want to consider abortion in the face of a serious fetal anomaly is nowhere near the same as looking at an existing child and saying, "A single shot ought to do it."

"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."

Again, another straw man/hasty generalization. Are these people really saying these horrible statements to her, or is she just inferring from their questions or facial expressions that that is what they must mean? I'm sure that some people do think these things about her and her daughter, but to infer that it is the majority opinion when she's not saying that she's clearly hearing these things from people (i.e. "they figure" does not mean "they say") is both wrong and unfair.

"What I don't understand is how we as a society can tacitly write off a whole group of people as having no value."

Again with the straw men. Has this woman ever heard of a logical fallacy?

"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."

Oversimplifications galore. Since the vast majority of aborted z/e/f's probably would *not* have had serious anomalies, how does she explain my decision to protect the right of all the others? Beyond that, how does she know that I automatically would abort in the face of Down's? Personally, I don't think I could abort for fetal anomaly unless it was inconsistent with life.

Boy, this woman has a gigantic chip on her shoulder. I can understand that she's had a hard row to hoe but she sure infers a lot from very very little.




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iVillage Member
Registered: 04-19-2006
In reply to: cl_misa101
Sat, 04-05-2008 - 5:38pm

OK I agree with you she either meets tactless people or she reads a lot into things.

The severity thing drove me nuts because it could really mislead a person who was trying to make a decision and did a google search.





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iVillage Member
Registered: 02-04-2008
In reply to: cl_misa101
Sun, 04-06-2008 - 1:11pm

That is a real fear that I have - that via prenatal testing - many children will be denied life out of 'moral responsiblty'.

iVillage Member
Registered: 02-04-2008
In reply to: cl_misa101
Sun, 04-06-2008 - 1:14pm

My step dad married a woman with two sons with Downs.

iVillage Member
Registered: 03-26-2003
In reply to: cl_misa101
Sun, 04-06-2008 - 4:37pm

>Bo-Bo is the sweetest thing in the world.

Sandy
iVillage Member
Registered: 05-01-2007
In reply to: cl_misa101
Sun, 04-06-2008 - 5:40pm

I completely agree with everything you wrote. Personally, were I to get pregnant (which I try to avoid at all costs) and decided to continue my pregnancy to point where testing could be done (not likely) and then found out that the fetus had a serious health issue, I would abort. I know myself, I could not handle that type of problem.

~Heather~

iVillage Member
Registered: 02-04-2008
In reply to: cl_misa101
Sun, 04-06-2008 - 5:47pm
What I described is like a CHILD - which is what Bo-Bo is.

iVillage Member
Registered: 03-26-2003
In reply to: cl_misa101
Sun, 04-06-2008 - 8:06pm

>What I described is like a CHILD - which is what Bo-Bo is.

Sandy

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