Palin and Down syndrome: Coverage soars
September 5th, 2008Editor’s note: Coverage of the Down syndrome angle in relation to the candidacy of GOP vice presidential candidate Sarah Palin is growing steadily. (Palin’s youngest son, Trig, has Down syndrome that was diagnosed prenatally.)
Rather than present each item as a separate post, we’ve decided to group them here. Click on the headline above to get the full version, or on ‘read the rest of this entry’ below, and please check back to our home page throughout the day for further developments.
PRENATAL TESTING:
… the medical community is excited about a new non-invasive blood test in the first trimester that detects genes that are behaving in a way that is linked to Down syndrome.
But advocacy groups warn that the test — which gives women the option to end a pregnancy sooner — could diminish an already small population of about 400,000 who have Down syndrome.
… “It’s ‘Gattaca World,’” said Los Angeles film maker Will Drinker, referring to the 1997 movie about a society that analyzes its citizens’ DNA to determine where they belong.
… The prenatal test, called SEQureDX , is being developed by the San Diego-based company Sequenom, which will conduct further studies this fall and hopes to market the product in early 2009.
Click here for a Sequenom message board on Yahoo.com in which commenters share views about the Palin candidacy’s potential impact on Sequenom’s stock price.
See earlier post on Sequenom. Business Week columnist says its first trimester screen for Down syndrome could help it dominate a market with multibillion-dollar potential.
COMMENTARY:
Sarah Palin, Down syndrome & the brave new world — Valerie Karr in the New York Daily News
Republican vice presidential nominee Gov. Sarah Palin has put children with disabilities in a national spotlight.
Her recent decision to have a child with Down syndrome places her in a tiny minority of American women. A staggering statistic: 92% of unborn children diagnosed with Down syndrome are now aborted in the United States. I don’t normally get overly exercised about the issue of abortion, but this number is striking – and a searing indictment of social values. Somehow, we are saying the lives of children with Down syndrome mean less than those of so-called normal children.
… At the current rate, if trends continue and women like Sarah Palin continue to be the tiniest minority, we will all but exterminate children with Down from society. And the world will miss out on the opportunity to experience these wonderful and giving members of our communities.
Yes, often many parents of children with Down syndrome experience grief and shock when given the diagnosis. But upon followup, parents expound on the joys and happiness their child has brought to the family, and the optimism they feel for their child’s future. Children with Down syndrome play with peers, participate in sports programs, graduate from high school and can live independent lives in the community with proper supports. Today, in the U.S. and internationally, there are waiting lists of parents wanting to adopt children with Down syndrome.
The Support the Palins Really Need — By Ellen Crosby in the Washington Post
It is said that God chooses the families to whom he sends His special children. The Palins are indeed right that Trig is a blessing and a gift. But how much better would it be if, instead of praising Sarah Palin for not choosing abortion, we could focus instead on what this child, and all disabled Americans, need from us? If we could be there for the Palins on the journey they face as a family? Doing so would surely add to the diversity of an election year that has already shattered barriers of race and gender.
REACTION FROM PARENTS, NONPROFITS:
South Florida mothers mixed on Palin; Some applaud, others criticize — Miami Herald
Brian Skotko, a physician at Children’s Hospital Boston and Boston Medical Center, said the United States is home to 400,000 mothers of children with Down syndrome, a genetic condition that causes developmental delays.
”There are many mothers like Sarah Palin who are finding success at home and success in the workforce,” Skotko said. “Every day they are proving that they can be mothers and leaders in their own communities.”
Still, caring for a child with Down syndrome can be demanding. Some are born with heart conditions, or prone to ear infections. They may have delays in developmental milestones, such as walking, talking and writing.
But medical advances are allowing people with Down syndrome to be included in regular academic classrooms, maintain jobs, and live long lives.
Palin connects to parents of Down syndrome kids — CBS2, Chicago (with video at Gigi’s Playhouse featuring Nancy Gianni, founder, and other parents and kids)
While some parents here are hoping Sarah Palin can help educate the nation about special needs kids, others are hoping for additional programs and resources.
… But most are simply hoping Palin can raise awareness and that with proper support, every Down syndrome child can shine.
Expert: Can a special needs mother be VP? — United Press International
Joanne Lara, a Los Angeles special educator and founder of Autism Movement Therapy and Aut-erobics, says Down syndrome in the family would not stop a parent from pursuing work outside the home.
“The role of a parent such as Sarah Palin — or family member, grandparent or in-law — is to chauffeur the child to therapy and talk to the therapist and then share what the therapist has to say with the rest of the family. Services are available, each provided differently state by state but they should be available — if everything goes the way it’s supposed to.”
Disability advocates see Palin as a leader — [Philadelphia, PA] Inquirer
As a high-profile politician, Palin increases the visibility of a group of people who are often overlooked, said David Tolleson, executive director of the National Down Syndrome Congress.
“It brings attention to both children and adults with Down syndrome,” he said. “Very often, people don’t tend to think of individuals with disabilities at all, unless they know somebody with a disability.”
And seeing Trig on TV with the Palins helps break down stereotypes.
“You get to see that he is a happy, healthy, normal baby in a normal functioning family. It’s no longer a great unknown; it’s not scary,” Tolleson said. “This baby looks happy and well.”
Governor Sarah Palin: White House Advocate Needed for Special Needs Children — National Alliance on Mental Illness press release
The National Alliance on Mental Illness expresses appreciation for the support of presidential and vice-presidential candidates about disability issues, then emphasizes that forceful leadership is need to reform a “mental healthcare system that is ‘a system in shambles,’ especially for children.”
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September 18th, 2008 at 9:11 am
To focus on the parents of of children with disabilities is a very ableist view. Palin speaks to our caregivers — not us. Obama had disability listed on his website far before Palin arrived.
September 11th, 2008 at 12:47 pm
In her Washington Post op-ed on Sept. 5, “The Support the Palins Really Need,” Ellen Crosby wrote: “How much better it would be if we could see past the hyper-toxic subject of abortion in this election and let Sarah and Todd Palin’s decision spotlight a topic far from our national consciousness: the needs of Americans with disabilities.”
The fact that the Palins’ infant son has Down syndrome presents an opportunity to focus on those with disabilities, but abortion cannot be ignored when discussing Down syndrome, considering that 90 percent of American women who receive a prenatal diagnosis of Down syndrome elect to have abortions, and that a new non-invasive Down syndrome prenatal test will be available soon.
Because Sarah Palin was tested and did not have an abortion, she is in a small minority. As a father of a daughter with Down syndrome, I say “way to go” to Sarah Palin and the rest of the 10 percent who choose not to abort. I also say welcome to the club, and that in my experience, the good in having a child with Down syndrome far outweighs the bad, despite the picture Ms. Crosby paints. Ms. Crosby is right — we should embrace Trig’s prominence as an opportunity to show that those with disabilities are worth helping. But I also hope Trig becomes a symbol to many that people with disabilities are worth bringing into this world.
September 5th, 2008 at 1:46 pm
I also, in light of the comments I made about objectifying Trig because he has Down syndrome, want to add that I realize if she hid him away from the world much of the world would assume it was out of shame (as would I). The issue I take isn’t with his exposure, it with the emphasis her campaign and the religious right is putting on her having him “in spite” of a prenatal diagnosis of Down syndrome.
Bringing a child with an obvious intellectual disability into a campaign that is giving airtime to his disability is a sticky place to be. Obviously I am loving Trig’s visibility, but I am trying to consider the long term effects of the way his visibility is being presented. I am still considering too…
September 5th, 2008 at 1:34 pm
As a mother of a two children with special needs, one whom has Down syndrome as baby Trig does, I must confess that I am loving seeing his wee little face plastered all over the media. I am thrilled to see Ms. Palin present him to the world in such a non confrontational way, with obvious mommy pride. I can’t tell you enough how much I am watching her bring him along to all of her major events in such a casual way. That is fantastic.
However, that doesn’t mean that I believe she will be able to (or even want to) advocate for my children. Advocacy is so much more than exposure, and while I love the exposure she is bringing the Down syndrome community, it would be a valid argument to make the case that Palin is not only exploiting her child to pander to the disability and pro life communities, but that by allowing her campaign to emphasize that she still had a baby with a disability following a prenatal diagnosis, she is ultimately objectifying his disability. Unfortunately much of the press Governor Palin has received has been based on the fact that she knowingly gave birth to a baby with Down syndrome – something that endeared her to the Christian right and I am sure was a factor in McCain choosing her for his running mate (as he had to try to reach out to the more conservative Christian, Libertarian, and Independent demographic). McCain supporters nearly fell over themselves rushing to tell the world that Palin is a woman of her word; she is SO pro-life she had a baby with a disability. Statements and implications such as this do the disability community no favors, as they are based on the assumption that disability is inherently negative and while the reinforce the claims of her moral fiber, they completely objectify a baby who should have the same right of any other baby…to just be a bay and to be wanted for him. I am not necessarily saying that Palin is draining her son of individuality and turning him into a negative assumption that must be overcome intentionally (though what do I know in the way of politics?), but her campaign is accomplishing just that by telling the world to leave her family alone and respect their privacy minutes before trotting them all out on stage amongst adoring fans and managers that are enunciating the choice that Gov. Palin made in choosing Trig.
As for advocacy, Palin is against “big government” and is running on a ticket known for cutting social and medical programs that serve the disability community (As she is pro-life even in the most extreme cases, disallowing abortions in the case of rape, incest, or health, she actually isn’t for small government, she is for different government. I can’t imagine a government bigger than the one that legislates what happens inside the bodies of half the population). The disability community needs big government, not smaller government. We need to not only have rights and access to independent living, employment, education, and medical treatment, but funding to ensure that the legislative rights aren’t a moot point. Access isn’t simply being permitted to enter, it is being able to enter, and in many cases accommodations are required to support that entrance. We have seen what the free market does for people with disabilities – nothing. Businesses don’t provide wheelchair access because it is the only way a person in a wheelchair can participate in their business, they do it because they have to. In order to reduce the burden on private industry for the accommodations that are necessary for the constitution to be applicable to ALL people, the government has to provide incentives. You can’t tell a school it has to educate all of it’s students appropriately, even when that means one on one course instructions, and not enable them to provide that support.
This then is what big government is. This is the government both of my children need – one that will ensure their safety and well being and afford them every avenue for self reliance so they may grow into their full potential and eventually become more independent. This is an investment we need our government to make in the disability community because it give rise to it’s own industries and while the initial investment is expensive, this is the best chance society has of creating more tax payers in society.
Those that don’t believe in big government often don’t want to make this investment. My children are too expensive; I should pull my family up by the bootstraps and make it happen myself. We should take care of our own.
And when will those that disavow the big government I speak of realize this is taking care of our own?
If this is the big government Sarah Palin is decrying, then she is fundamentally unable to represent my children or advocate for them. She will have more potential to damage the current system (which is failing as it is) than to heal it, and even if she had a thousand children with Down syndrome, nothing could change that.
This is Sarah Palin’s chance to tell me how she wants to advocate for my family. So far I know she wants to undermine freedom of choice and allow assault weapons on the street. I know she doesn’t support sexual education in public schools (which went real well for her own family, might I add) and that she is running on a ticket that has a long and in-noble history of slashing programs and medical access for the disability community.
She has roughly 60 days to show me how she can overcome this and find a way to be the advocate I need her to be. There is nothing more in the world that I would enjoy more than eating my words, but until she serves them up for supper, my vote is blue all the way.