The 'Almost Perfect' New York Times story

I'm not sure, but I think perhaps the New York Times had a "first" in its Week in Review section yesterday -- a story leading off with a quote from a person with Down syndrome. And not just in aid of a "gee-whiz" inspiration story, either. This was an in-depth trend story: The Problem With an Almost-Perfect Genetic World.

"I don't want to think like we're being judged against," Ms. Peterson said. "Not meeting their expectations." Mia Peterson, identified as the "chief of self-advocacy for the National Down Syndrome Society," was only one of a number of people talking to Times reporter Amy Harmon about the potential fallout from the new prenatal test announced recently that can detect the presence of Down syndrome in fetuses in the first trimester.

for people with Down syndrome and the cluster of other conditions subject to prenatal screening, the new test comes with a certain chill.

Because such tests often lead to abortions, people with conditions from mental disability to cystic fibrosis may find their numbers dwindling. As a result, some fear, their lives may become harder just as they are winning the fight for greater inclusion.

"We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us," said Andrew Imparato, president of the American Association of People With Disabilities, who suffers from bipolar disorder. "For me, it's very scary."

Leave it to Michael  Bérubé to make cogent points. Harmon quotes him as well:

Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if fewer children are born with the condition, hard-won advances like including them in mainstream schools may lose support. "The more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you'll wind up with a society that doesn't welcome those people once they're here," he said. "It turns into a vicious cycle."

Anthony Shriver, founder of Best Buddies, a nonprofit organization that helps people with intellectual disabilities form friendships, said smaller numbers will mean even greater social isolation for the people his group serves.

Amy Harmon is good on disability issues. She did the very good pieces last year on autism and "neurodiversity."  Read her May 9, 2004 Neurodiversity Forever: The Disability Movement Turns to Brains and her December 20, 2004 article, How About Not 'Curing' Us, Some Autistics Are Pleading

•  Thanks

  for highlighting this story.

  by dwahzon on Mon Nov 21, 2005 at 07:19:36 AM PDT

•  What a Hobson's choice

  The disability movement versus the inate desire for the child of one's dreams.

  by hairspray on Mon Nov 21, 2005 at 07:20:19 AM PDT

•  Interesting article

  but what's the option?

  Surely we are not going to force parents to have children they don't want.
  

  by GT on Mon Nov 21, 2005 at 07:23:11 AM PDT

  •  Did you even read the article?

    The point is that, as testing increases and more fetuses with conditions (such as down syndrome) are
    aborted -- fewer research dollars will be available:

    Some bioethicists envision a dystopia where parents who choose to forgo genetic testing are shunned, or their children are denied insurance. Parents and people with disabilities fear they may simply be more lonely. And less money may be devoted to cures and education.

    The Cystic Fibrosis Foundation, for instance, does not endorse prenatal testing, which the American College of Obstetricians and Gynecologists recommends offering during pregnancy.

    "If you can terminate pregnancies with a condition, who is going to put research dollars into it?" said Nancy Press, a professor of medical anthropology at Oregon Health and Science University.

    Indeed, the $15 million spent on the new test for Down by the National Institute of Child Health and Human Development might have gone instead toward much-needed research on the biochemistry of people living with the condition, said Michael Bérubé, co-director of the disabilities studies program at Pennsylvania State University.

    by coffee cup on Mon Nov 21, 2005 at 08:39:46 AM PDT

    •  Yes...

      Yes, I did read the entire article. However, I think I must be missing the point you are getting at.  I believe that, as the article states, it is accurate to say that as fewer people with a particular condition are born, fewer research dollars are allotted to studying the condition. If perhaps you mean that "research" means necessarily that it's research to terminate the condition, I'm not sure I agree. Some research is also aimed at making life better for people with various conditions, and disability rights activists often say that more dollars would be put toward making life better for people with various types of disabilities -- except that people focus, instead, on preventing the condition.

      by mjohnson on Mon Nov 21, 2005 at 08:54:59 AM PDT

      •  I was responding to GT

        and I am basically saying the same things that you are -- the worry for some in the disability rights community that even more dollars will be diverted from research about the conditions as they exist now for people.

        by coffee cup on Mon Nov 21, 2005 at 09:03:27 AM PDT

        •  Doh! My bad...

          Yeah, I see that now. Which shows the problem with responding too quickly, rushing out the door to lunch. Anyway. Thanks for your comments!

          by mjohnson on Mon Nov 21, 2005 at 10:27:36 AM PDT

      •  I agree

        by hairspray on Sun Nov 27, 2005 at 02:16:02 PM PDT

•  hardly an indepth article

  since it doesn't talk about the tests, the results, the usual counseling, the changes(?) in numbers of people with Down syndrome/cystic fibrosis over the past 20 years (and their improved life expectancy), reasons why abortions are chosen, usual and/or common health/developmental/outcome issues, health insurance issues, long term care issues, etc. And I hardly think that "science" is the enemy of persons with serious genetic problems.  

  It was interesting and a landmark, and perhaps it had to be written the way it was. But they might consider a followup.

  by seesdifferent on Mon Nov 21, 2005 at 07:41:49 AM PDT

  •  I liked the humanity

    and the ethical questions brought up in the article. I am a lesbian, and while I don't believe lesbianism is genetic, many people DO believe there is a genetic link to gayness. This is one of the reasons I think gay people are shooting themselves in the foot when they promote the "born that way" defense of gay and lesbian equality. What happens when they supposedly find a gay gene? You can bet there will be abortions.

    And what about the great geniuses who were born with disabilities? Steven Hawking? Toulouse-Lautrec? Where do we draw the line? And should lines be drawn?
    

    by coffee cup on Mon Nov 21, 2005 at 08:49:45 AM PDT

•  Thanks Mary

  For those of you who don't know, the Disability Rag/Ragged Edge has been the leading newsletter advocating disability rights for decades (since 1984).
  

  by coffee cup on Mon Nov 21, 2005 at 08:56:24 AM PDT

•  Down syndrome isn't really the problem

  In general, children with mild Down syndrome who grow up in good homes can go on to lead a good life. I respect the right of a woman with Down syndrome to have an abortion, but I can understand why people with Down syndrome would be peeved at that kind of decision.

  The real problem is when you have a fetus with some of the other, more serious genetic problems in the same category, such as Trisomy 13, which causes a horrible, automatic death soon after birth.

  If a pro-interference-in-my-womb person wants to object to automatic abortion of babies with Down syndrome, well, OK, live and let live. Just stay out of women's wombs.

  If someone wants to object to women aborting fetuses with Trisomy 13, my reaction would be that I hope there is a god who has a bunch of thunderbolts to hurl at that person, right now. The idea of forcing a fetus or baby to live with a condition such as that or Tay Sachs because of some idiotic right-to-life nonsense is just terrible. Our torturemasters in Abu Ghraib wouldn't put a WMD builder through the kinds of tortures that a Tay Sachs baby suffers.

  by sclminc on Mon Nov 21, 2005 at 10:05:19 AM PDT

  •  re: "pro-interference-in-my-womb" people

    The majority of the folks in the mainstream disability rights movement that I know are pro-choice. But, as the Harmon article began to show, I think, most of these pro-choice disability rights folks also believe there is far too little real reflection about the issues the Harmon article raised, and that it's past time for that national reflection to occur.  You can be  pro-choice and still ask that we as a society make an effort to come to grips with what message we send people like Ms. Mia Peterson. And we DO send that message, as a society. One can be ardently pro-choice and yet work to ensure that women who conceive fetuses whose lives are going to be disabled understand that it is not ALWAYS a "fate worse than death." And I honestly do not think this has yet become the kind of national issue it needs to. Harmon's aticle is a teensy start.

    by mjohnson on Mon Nov 21, 2005 at 10:37:01 AM PDT

    •  One problem, though, is that the

      disabled people who are speaking up are often really bright, or, even if they're learning disabled, they're fine in some areas. Example: I have a friend who's learning disabled enough that she has to have a job coach, regular visits from a social worker, etc. But she knows plenty about her favorite rock and TV stars. She has a good life.

      I had a friend in college with cerebral palsy whose mother prayed for him to die when he was small. But, really, as an adult, he was just a brilliant, good-looking Greek scholar who talked sort of funny.

      I think in my heart that it would be wrong to abort people like that just because of disability if you knew that's what they were going to be like.

      And there are people with autism or Asperger's who carve out some kind of tolerable life for themselves and post on the Internet.

      But I think all those people have to remember the Tay Sachs babies and that one size may not fit all.

      I'm really conscious of this because my ob/gyn didn't include a Tay Sachs in my amnio at first and I had to call all around to get a Tay Sachs test done. At first, I wasn't going to do the test, especially because my daughter grabbed and wiggled the amnio needle, but then I read about what Tay Sachs babies go through and decided that I would do anything I had to do to protect a baby from that kind of suffering.

      by sclminc on Mon Nov 21, 2005 at 01:11:53 PM PDT

      •  'One size may not fit all'

        Your comment points up for me the real anquish surrounding this issue. The image of your daughter and the amnio needle is one I won't soon forget!

        Someone sent me an email today posted on a listserv discussing the Harmon article.  The comment is from a blind woman who's a freelance writer:

        Sometimes, the sorrow of where we are headed as a society is so grave that, at least temporarily, I lose my anger, my outrage, and can only weep.  The reminders in this article have that effect. But of course, we can't give up, we have to keep fighting, writing, protesting, doing what we can to keep the human in humanity.  I'm glad this article begins with Mia; she is one of the finest human beings on the planet -- and to think that somewhere, right this minute, some ill-informed mom could be aborting a baby who might grow up to be just as wonderful ...

        I don't have an answer as to where we go next. Not even close to one.  What I do know is that this issue needs more public airing, not less. And that people need to really understand that "disabled fetus" doesn't mean any one thing, and quite often -- usually, I'd venture to say -- preconceived notions of what "life will be like" for such a child are based as much on fear as anything. We all need to know more, to undertand more, and to talk about it more.

        Right now we don't have a world in which people with disabilities like your classmate with CP are simply part of society, a society in which they don't face job discrimination routinely or a lack of accessible housing or any way to get a personal aide paid for (except in rare cases). People today are still institutionalized! And most of society doesn't recoil in horror at that.

        I think most of us can't even envision  a society without barriers, without disability bigotry, with full and equal access. It doesn't seem realistic.  We say it costs too much.

        Given this climate, I think it will be a long time before the issue of aborting because of disability can be truly about only the "right to choose" or the worry about an offspring's endless physical pain -- and not also about the mother's -- and the family's -- own economic and emotional fears and, perhaps, horror. That some of this reaction is, in fact, rooted in a kind of bigotry is something that almost nobody outside the disability rights movement would venture to say.

        by mjohnson on Mon Nov 21, 2005 at 03:25:21 PM PDT