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Questions, we get questions

September 5th, 2008

By Patricia E. Bauer

Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

Interestingly, a recent research study found that parents of children with Down syndrome are less likely to divorce than parents of children without disabilities; another found that siblings are more inclined to be positively affected by a sibling with Down syndrome than negatively affected.

At the same time, families with children with disabilities report higher costs for medical care and other supports than comparable families, as well as a reduction of earnings for parents.

4) Wasn’t Palin at a high risk of having a child with Down syndrome when she got pregnant with her fifth child?

The risk of having a child with Down syndrome increases with age, and a woman who has a baby at the age of 44 has a risk of approximately one in 35 of having a child with Down syndrome. For women under 30, that risk is approximately one in 1,000. Most babies with Down syndrome are born to younger women, however, because they have more babies.

5)  If Sarah Palin has a baby with a disability, how could she possibly consider running for vice president? Wouldn’t she be neglecting her family?

All children, whether disabled or not, need loving adults to take care of them and make sure their needs are met, but there’s no requirement in the marriage contract that specifies it must be mom. Gov. Palin and her husband Todd have said he will take the lead in childcare until further notice. (Presumably, there aren’t many jobs for commercial fishermen, oil field operators and snowmobile racers in Washington, so that shouldn’t be a problem.) The couple also says they have a broad base of support from extended family members and friends.

And besides, would people be asking that if she were a man? For another answer to this question, see Rosario Marin in the question below.

6)  Are there other high profile people with family members with Down syndrome?

Let’s see –

Former French president Charles de Gaulle (daughter); former vice president Hubert Humphrey (granddaughter); former senator and governor Lowell Weicker (son); entertainers Roy Rogers and Dale Evans (daughter); St. Louis Cardinal slugger Albert Pujols (daughter); Congresswoman Cathy McMorris Rodgers (son); Congressman Pete Sessions (son); D.C. Delegate Eleanor Holmes Norton (daughter); journalist George Will (son); playwright Arthur Miller (son); Emmy-winning Sesame Street writer Emily Perl Kingsley (son); celebrity chef Nigella Lawson (niece); Oscar-winning actor Jamie Foxx (sister); actor John C. McGinley (son); and Rosario Marin (son), the former treasurer of the United States and current secretary of California’s State and Consumer Services Agency.

And let’s not forget the high-profile people who themselves have Down syndrome: Chris Burke and Andrea Friedman, the actors with Down syndrome who starred in television’s “Life Goes On” series; Karen Gaffney, who swam across Lake Tahoe; Brad Hennefer, who earned two varsity letters (golf and basketball) in high school; actor Luke Zimmerman; actor Blair Williamson

Interesting fact: Down syndrome was first described in the 19th century by British physician John Langdon Down. Nine years after his death, his grandson was born — with Down syndrome.

7) Since John McCain picked a running mate who has a child with a disability, should we assume the McCain campaign is going to make a lot of expensive promises to the disability community?

That doesn’t seem likely. Advocates for people with disabilities and their families tend to be looking for universal health care and adequate funding for Medicaid, Medicare and Social Security -– not the traditional domains of the Republican party. While the Obama campaign website has an extensive section devoted to issues of concern to people with disabilities, the McCain campaign does not.

Still, both McCain and Obama are among the co-sponsors of an updated version of the Americans with Disabilities Act, currently awaiting action in the Senate, and both have pledged to increase federal funding for special education.

And consider this: George H.W. Bush reached out to people with disabilities in his 1988 acceptance speech, and pollsters later credited the support of the disability community with half of his margin of victory over Michael Dukakis. Two years later, Bush signed into law the Americans with Disabilities Act, the landmark civil rights law that prohibited discrimination against people with disabilities.

8)  When you see a person with Down syndrome in the community, can you assume that their mother opposes legal abortion?

Not at all. The community of people with Down syndrome is as diverse as the rest of the American population, with representation from red states and blue ones, big cities and small towns, people with religious affiliations and those without, all races, all colors, all demographics.

Mothers of people with Down syndrome are probably as divided on Roe v. Wade as the rest of the American public, with some opposing abortion under any circumstance, others believing it should be freely available, and still others who fall into the “safe, legal and rare” camp.

There are many who favor a woman’s right to choose abortion, but opted not to do so when they themselves received a Down syndrome diagnosis. I’ve met women who decided not to get tested because they feared amnio-induced miscarriage, because they thought Down syndrome would never happen to them, or because they knew they’d cherish any child they got. Some got reassuring results on early prenatal blood tests only to find out later that their children actually did have Down syndrome. Some mothers had their children before prenatal testing was widely available or offered to their age group.

And many of these women are hopping mad that their children with disabilities are being portrayed against their will as poster children for the anti-abortion movement.

9) Why in the world did the Palins name their kid after a high school math course?

Todd and Sarah Palin say that “Trig” comes from a Norse word meaning strength. They do confirm, however, that their older son Track was named after a high school sport. Lucky for him his parents weren’t devotees of synchronized swimming.

10) Like Trig Palin, more than 400,000 Americans are estimated to have Down syndrome. What should you do if you meet one of them?

Welcome them. Presume competence. Treat them with respect.

(RNC photo)

10 Responses to “Questions, we get questions”

  1. Terri Blackwelder Says:

    When we went to see the movie, there was a trailer for a new movie called “Adam,” about a weird guy with Asperger’s. My son has Asperger’s and I could NOT believe how they portrayed this guy. My son asked me “Mom, am I like that??” I can’t believe that a movie would be made that makes fun of people and paints a whole group as the same. There are degrees of autism and the social struggles are definitely not funny. My son was asking if people laugh at him like the audience was laughing at the trailer. Unbelievable.

  2. Mark Miller Says:

    Thought you might be interested in my latest blog post, on Secretary Duncan’s non-answer about paraprofessionals and the larger issue — special ed just doesn’t seem to be on his radar.

    http://specialneeds08.blogspot.com/2009/07/open-letter-and-homework-for-secretary.html

  3. Elizabeth Says:

    I can’t help but think that all five children need their parents: one has DS, one is pregnant, the other about to be deployed (although perhaps not now that his mom is a VP candidate), and the other two kids have their needs as well. Yes, I would be asking this if she were a man. If she were a man with FIVE children under twenty, I do not think the VP slot would be an appropriate career choice. If she really cares about children, she should have turned down this offer.

  4. Penny Says:

    This is so gloriously sensible–now let’s hope it’s pinned on cubicle walls in newsrooms everywhere by Monday morning, and we can look forward to far more accurate reporting and commentary on the subject very soon.

    Just one additional note: Just as you should be respectful and welcoming and presume competence for someone with Down syndrome, please do the same for anyone else with a developmental disability, no matter what its underlying cause or outward manifestation. Down syndrome is the most familiar and visible of the diagnoses that are associated with developmental disability, but it’s not otherwise exceptional. Each of the points in this post apply to a much wider population.

  5. Jessica @ Raising Joey Says:

    Great post!!!

  6. Nicole Says:

    Thanks so much for making accurate information available on behalf of our families! I really respect your blog and also want to thank you for being such a great advocate!

  7. William L Freeman Says:

    GREAT! As both an MD & lay person disability “activist,” this is the best, most comprehensive, brief summary of the world of people, Moms & Dads, families, and communities with Down Syndrome from all its aspects — medical, psychological, social, political, economic, and just plain human. I am forwarding it to many friends, colleagues, & co-activists.

  8. Mary Says:

    Thanks for this, it is very timely and helpful. I have emailed it to several journalists I know.

  9. Heather Says:

    Outstanding! This is the most reasonable, complete bit of journalism I’ve seen yet. Keep up the good work.

  10. Terri Says:

    What a great article–I am passing this along!

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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.

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