Gerson on Sarah Palin’s ‘bad example’
September 13th, 2008Writing in the Washington Post, columnist Michael Gerson responds to a recent statement by a medical authority expressing concern that a “prominent public role model as the governor of Alaska and potential vice president of the United States completing a Down syndrome pregnancy may prompt other women to make the same decision against abortion because of that genetic abnormality. And thereby reduce the number of abortions.”
Dr. Andre Lalonde, the executive vice president of the Society of Obstetricians and Gynecologists of Canada, said this would be problematic because of women who aren’t “prepared to deal with the consequences” of a child with Down syndrome. An excerpt:
A claim like this one tears away the pretense of “choice” among some in the medical community. When the medical establishment encourages doctors to encourage broad genetic testing for genetic abnormalities, then emphasizes the hardship of raising a disabled child, eugenic abortion is not merely an “option” but a recommendation. And people such as Sarah Palin, who resist the consensus against the elimination of “genetic abnormality,” become a bad example, instead of a heroic one.
This difference clarifies the most basic question of medical ethics: How do we improve humanity? By eliminating the “imperfect” from among us? Or by showing our humanity, especially toward the “imperfect”?
There are many comments on this item on the Washington Post site.
Earlier post here.
UPDATE, as of 09/18/08 — Gerson has removed his post, which referred to comments by Dr. Andre Lalonde as they were described by a Los Angeles Times blogger. The Los Angeles Times has issued a clarification of its characterization of Dr. Lalonde’s remarks. That characterization is quoted in the top paragraph above.
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September 16th, 2008 at 3:34 pm
Well done Michael Gerson. We need more more journos like Michael in Australia. Australian press reaction to Sarah Palin’s appointment focused on her ‘family troubles’ with 5 children, one with Down Syndrome. This went on for at least a week — once again fueling society’s lack of acceptance for people with disabilities. No need to convince the readers of this site that more words could have been generated for the newspaper articles if a positive and supportive approach was taken. The journalist was obviously struggling for content.
I was recently privileged to be at a volunteer at a Ski Camp in Australia for people with disabilities and was moved by the progress the athletes, how capable they proved to be and how much it meant to them. Well done Disabled Winter Sports Association of Australia for providing the camp. If only more people had the opportunity to experience people with disabilities they would have a different view.
Lets hope the Australian Obstetricians have more understanding than Dr.Lalonde.
Where does prenatal screening stop? Perhaps the worst disability in our society is — lack of common sense, compassion and understanding!
September 15th, 2008 at 6:40 am
The comments made by Dr Lalonde to the Globe and Mail sound similar to comments he made in a story in the [Toronto] National Post (“Call for more fetal tests raises concerns,” Jan 6, 2007). Those comments as well prompted a strong reaction from many in the DS community here in Canada. Many members of the Canadian Down syndrome community objected to Dr Lalonde’s comments in the National Post as portraying only negative aspects of raising a child living with DS.
He may be an unfamiliar name to Americans, but his appearances in the press are well known to many in Canada.
September 14th, 2008 at 5:10 am
Lalonde’s comments are not neutral. They are not detached. They are not professional. And they certainly don’t indicate a thoughtful review of the alternatives and benefits available in the 21st century. Lalonde has failed in his duties to the general public. Instead, he used his day in the spotlight to generate fear and limit choice.
Choice implies that women are free to pick from a variety of options, not just pick abortion because Lalonde or another similar-minded physician scares them into it.
INFORMED CONSENT
Underpinning any medical choice in America is the concept that physicians will provide their patients what is referred to in the law as “informed consent.” A physician is legally obligated to go beyond a referral for an abortion or a rote listing of potential risks and also inform their pregnant patients of alternatives and benefits.
So what are the alternatives and benefits for parents who have received a prenatal diagnosis of Down syndrome?
ALTERNATIVES
There is a waiting list of over 200 families waiting to adopt babies with Down syndrome.
The National Adoption Awareness Program provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. Making an adoption plan for a child with Down syndrome is a loving choice and can be the right choice for some families. Expectant parents can call them toll free for more information at 888-796-5504 or visit their website at http://www.dsagc.com/ to view a video about adoption as an option.
BENEFITS
In addition to some hardships, there are also myriad of benefits associated with having a child who has a disability.
There has never been a better time to be born with Down syndrome.
Life expectancy for individuals with Down syndrome is 55 or older (as opposed to the “shortened life span” Lalonde was taught back in the Dark Ages).
Researchers are making great strides in treatments. Scientists at Stanford believe they will be able to improve cognitive functioning. Prior to counseling patients, physicians should perform due diligence and obtain continuing medical education. (see The Down Syndrome Research and Treatment Foundation http://www.dsrtf.com/)
Due to higher expectations, inclusive schools, and stronger education laws like IDEA and NCLB, more and more individuals with Down syndrome are receiving a quality education. Many make the honor roll. Many are now attending college and obtaining quality employment. Craig Blackburn travels the U.S. as a self-advocate (http://www.craigblackburn.net/). Patricia Moody is a teacher’s aide in her school district. Nannie Sanchez from Albuquerque, N.M., is an accomplished public speaker and powerful self advocate. Nannie successfully lobbied her legislature to obtain funds to establish a Self Advocacy Center in New Mexico in 2004.
People with Down syndrome can and do marry.
The days of institutionalization are over. Children with Down syndrome live in their communities with their families, and attend their neighborhood schools. Many adults with Down syndrome live independently or in group home settings.
A study last year found that families with a child with DS have a lower divorce rate than all other marriages. A 2003 Australian study reported that siblings of individuals with Down syndrome are more empathic and caring than siblings of typically-developing siblings. Similarly, a 2006 study concluded that “brothers and sisters who have siblings with DS confirm what previous studies have suggested: persons with DS add an appreciated dimension to their families and deepen their understanding of the human phenomenon. Siblings often have a matured respect for diversity and tend to recognize, at a young age, that happiness is not defined by accolades or fame.”
Finally, there are countless anecdotal stories and first-person accounts about the joy and love children with Down syndrome bring to their families, many of which are featured in the book Gifts: How Children With Down Syndrome Have Enriched our Lives. And to those who discount this anecdotal evidence, I urge you to stop using second-hand anecdotes and stories to instill fear and support your case for abortion.
Our family is but one example. We have 3 girls. Our middle daughter, who is 4, has Down syndrome. She is silly, sweet, energetic, and bright. She loves swimming and bath time. Her sisters adore her and vice versa. Sometimes they fight. Sometimes she’s a stinker and she gets in trouble. My husband and I are more patient now. Her older sister sticks up for her friends and has an appreciation of diversity and individual differences. Our daughter with an extra chromosome has taken us down a path we never imagined, and our lives are richer for it.
Are there some health issues associated with Down syndrome? Sure. Forty to 50% will be born with heart issues. But 50% will not. And — this is something Lalonde failed to mention — medical strides mean that most medical issues are correctible through surgery or medication. What health issues do we face now? Our daughter with Down syndrome gets frequent sinus infections and has reflux. But then again, so do I.
Are there therapy appointments? Sure. But what Lalonde failed to mention is that Early Childhood Intervention programs provide home-based therapy for free or on a sliding-scale basis based on the parent’s income. He also failed to mention that children with Down syndrome, who can begin their public education at age 3, are eligible for free therapy services from their school district.
Though he won’t realize it for years, Trig Palin has made this country stop and take a long hard look at the way we, as a society, treat those with disabilities.
Trig has raised awareness about the abilities of those with Down syndrome.
Most importantly, he has exposed prejudice, ignorance, and fear.
Physicians — this is the 21st Century. Think before you speak. Do some research and continuing education. Even research from the 1990s is no longer accurate.
And if you’re going to talk about “choice,” make sure the PATIENT is actually given one!
Sincerely,
Lori T. Barta, J.D.
Wife (of a physician), Mother (of 3 children), Advocate (for my daughter with Down syndrome)
September 13th, 2008 at 11:38 am
I’m glad Mr. Gerson responded to the statements of Dr. Lalonde. I have a six-month old daughter with Prader-Willi syndrome. Routine prenatal screening would not have detected this disorder, not that it would have mattered. It never occurred to me that abortion rates for Down’s sydrome pregnancy would be so high or that doctor’s would even consider them preferable. My only complaint is the designation of “heroic” to Sarah Palin’s choice to continue her pregnancy. I think that misplaced heroism only feeds the perception that special needs children are somehow less worthy of life.
September 13th, 2008 at 11:16 am
It should be noted that the blog post that inspired Gerson’s rant has been deleted by the L.A. Times due to its misrepresentation of the beliefs of Dr. Lalonde.