Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Opinion: ‘Disability-free world may not be a better place’

February 19th, 2010

Arthur Caplan, writing at MSNBC.com, reacts to a report by the Associated Press that genetic testing is leading to the birth of fewer and fewer children with Down syndrome and other genetic diseases in the United States. An excerpt:

On a trip to Ireland a few years ago, I was struck by a number of faces among the crowds. They were children with the tell-tale look of Down syndrome.

What struck me was the realization that I hardly ever see these young faces out on the street in the United States.

… Reducing the burden of disease is obviously a good thing. But genetic testing of parents, and, as is now happening with increasing frequency, embryos, raises some difficult ethical challenges as well.

… As some families with a Down syndrome child have noted, fewer kids with Down may mean fewer public programs, fewer resources in schools and for housing and less political clout. If some genetic diseases begin to fade away, will society’s willingness to provide support for the diminishing numbers of those born with such diseases fade as well? And are we headed to a time when parents who choose not to be genetically tested find themselves condemned as morally irresponsible parents?

Caplan is director of the Center for Bioethics at the University of Pennsylvania.

7 Responses to “Opinion: ‘Disability-free world may not be a better place’”

  1. Nancy Iannone Says:

    Kate,
    I assure you that of the many prenatally diagnosed parents I have supported, every one of them including myself has worried intensely about their child’s future.

    Speaking for myself and my child’s disability, I never “chose” to produce a child who has Down syndrome, despite the value I believe they do bring to the world. I was not given the choice of Down syndrome or no Down syndrome. I was presented with the choice of life or death, and I chose not to end the life of my child.

    Yes, my daughter has challenges, but she also enjoys her life very much. As a parent, I am continually faced with decisions about her welfare — some are easy and some are difficult. But while receiving her diagnosis was difficult, making a decision to let her live was not.

    I will continue to make decisions for her which will hopefully lead to a very fulfilling life, including the power to make decisions for herself. I have only the lessons of those who came before us and the observations of the adults with Down syndrome around us to “know” what goes into having a happy and productive life, but I do feel confident that this is exactly what my child will have.

  2. kate Says:

    Hey Everyone,
    I don’t have DS but i do have a similarly debilitating disability. From the problems I have had to go through I will never allow myself to produce another person that has to go through the suffering I have had to. Not because of the way I have been treated as a human being by others, but the frustration of knowing what I want to do and seeing other people doing it but never being able to do it myself as hard as I try, and living through a lot of pain both because of this and because of physical pain. I believe that neither option should be pushed on potential parents, but I do believe you should give it serious consideration for the future life of that child and what they will have to put up with.
    Thank you.

  3. Pamela Wilson Says:

    To Rachel, who is asked all the time ‘you didn’t get genetic testing?’ –- how about developing some ‘snappy comebacks’ for rude remarks like that?

    “There’s no prenatal test that will predict whether a child will grow up to be (an insensitive jerk) like you.”

    I just happened to be thinking of this after reading an article in the Toronto Globe and Mail:

    There’s No Such Thing As The Perfect Child

    The mom who wrote this article, Sue Robins, was originally concerned about what parents of her son’s classmates were saying to their children when one of them told her “My mom says I have to be nice to Aaron because he is different.” I wish we had the presence of mind to respond to comments like that with “I hope she tells you you have to be nice to
    everyone, because each of you is different.”

    Even the kids who can pass as ‘plain vanilla’ know that they have unique challenges and other issues that make them different. Building inclusive communities allows them to spend less time hiding what makes them different and more energy to explore what makes them exceptional.

    Some people are giving Sarah Palin credit for creating a public conversation about the Family Guy script featuring a character with Down syndrome, but we should be giving Andrea Friedman credit for breaking stereotypes by getting paid to play the role as a voice actor and also for publicly stating a difference of opinion with Mrs. Palin. She is sending a stronger message about prenatal testing than any of us parents, whether we agree with her on this issue or not.

    The next time someone makes a rude remark to us about whether women in general or we individually should have prenatal screening, we should be inspired by Andrea Friedman to fire back our own opinions. All expectant moms should have prenatal counseling and support -– childbirth education classes alone never prepare a first time mom for the changes a baby with no diagnosis at all will bring, or how different each newborn in the family will be. Compared to that, a diagnosis of Down syndrome just adds a little bit extra to the mix.

  4. Amy Says:

    I did have the prenatal screening and had some elevated results but refused the amnio, so when my beloved daughter was born with DS I had numerous doctors tell me that “I had a screening test, not a diagnostic test therefore I should not have been totally surprised with the results”.

    However, prior to having a child with DS, I was totally against bringing a child knowingly with DS into this world. How ignorant I was. The best thing that has ever happened to me is having my daughter.

    I watch these issues closely because i used to be one of those people who thought prenatal screening was the best thing for all pregnant women to undergo and that when a “defect” was noted then termination was the best thing to do. Thank goodness the person i used to be is no longer here, thanks to my beloved daughter.

    I think the world would be very empty without all the “special people” in it, especially the wonderful people who have DS.

  5. Rachel Says:

    I get asked all the time – you didn’t get genetic testing? One woman even felt the need to explain to me that there is testing available to avoid Ds

  6. Nancy Iannone Says:

    Along with ethical dilemmas come abuses as well. This month I spoke at length to a local woman whose perinatologist applied intense pressure on her to terminate AFTER she clearly and firmly told him she was continuing the pregnancy. He brought up “societal cost,” told her she’d “never go on vacation,” and despite numerous other (much worse) statements emphasizing a very dark picture, he did not give her one scrap of reliable information on Down syndrome. He did not give her the packet of information his office has on file. He did not refer her to a specialist experienced in Down syndrome. He gave her no links to national or local groups. It seems the only thing he offered was termination.

    Thankfully, this mom had the presence of mind to be suspicious, and the tenacity to seek out information. She cold-called a Down syndrome clinic and thankfully they were able to give her information and an appointment with a specialist, and they connected her to me for support. His treatment of her caused so much damage. IT should NOT have been that way. In the five years since my prenatal diagnosis, I thought we were making progress. Back then, I was floundering on my own, cold-calling parents and groups after receiving no information. It is so disheartening to see a mom going through something much worse at the same medical facility where I received perinatal care.

    I did contact Mr. Caplan a few weeks ago about this, and thankfully he was able to connect me with a doctor who may be able to help with this situation. I hope.

  7. Scott Says:

    I don’t want more people to have Down syndrome, although there is some truth to the strength in numbers argument when it comes to advocacy.

    I just want the people who do have Down syndrome to be treated with the same respect and be given the same opportunities as the rest of us.

    If that happens, we may not have to worry about the public programs that Mr. Caplan speaks of.

Leave a Reply

Comment

Please copy the string tRsaIY to the field below:

 
`

About the Site

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

Join journalist Patricia E. Bauer as she seeks to bring you the best information about what's happening now and what it may mean for you and your loved ones.

Read More »

Search

Categories

Read More »

Not2BeMissed

Read More »

Entertainment

Read More »

School Restraints

Read More »

Prenatal Diagnosis

Read More »

Obama Administration

Read More »

My Articles & Essays

Read More »

FAQs

 

Headlines

Read More »

News2Use

Read More »

Mailing List

Sign up for our mailing list!





RSS Our RSS Feed



Archives
  • November 2010
  • October 2010
  • September 2010
  • August 2010
  • July 2010
  • June 2010
  • May 2010
  • April 2010
  • March 2010
  • February 2010
  • January 2010
  • December 2009
  • November 2009
  • October 2009
  • September 2009
  • August 2009
  • July 2009
  • June 2009
  • May 2009
  • April 2009
  • March 2009
  • February 2009
  • January 2009
  • December 2008
  • November 2008
  • October 2008
  • September 2008
  • August 2008
  • July 2008
  • June 2008
  • May 2008
  • April 2008
  • March 2008
  • February 2008
  • January 2008
  • December 2007
  • November 2007
  • October 2007
  • September 2007
  • August 2007
  • July 2007
  • June 2007
  • May 2007