Thursday, September 04, 2008

Sarah Palin, Down syndrome and special needs

My younger son, Elijah, has Down syndrome, so naturally I was very interested to hear about Sarah Palin's candidacy. Her experience of getting a prenatal diagnosis of Down syndrome halfway through the pregnancy parallels our own experience. Our doctor told us, "Based on this diagnosis, you can choose to terminate the pregnancy." (We later learned that about 90% of babies prenatally diagnosed with Down syndrome are terminated.) Like the Palins, we chose to have our baby, and now we can't imagine life without Elijah. (My column for the forthcoming October issue of Christianity Today is going to be about Down syndrome and disability, because October happens to be Down syndrome awareness month. I had already written and sent in my column a month ago, long before Palin's candidacy had been announced. Kind of wild.)

After the announcement of Palin as the VP pick, at first I didn't know who she was. Then I realized I had read articles about her last spring when Trig was born, when she said, "Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives."

I thought about blogging about Palin earlier, but Andy Crouch beat me to the punch. He notes that when he was a teenager back in the '80s, he remembers seeing numerous kids his age with Down syndrome. But he doesn't see as many today, because so many have been aborted. On the Palins' decision to have Trig, Andy observes,

I cannot think of any other public figures in my adult life, at least of the prominence they are about to enjoy or endure, who have made this decision. They will cause many, many families to reconsider the horizons of the possible. Their public example could very well lead to a cultural sea change—a dramatic shift in the “horizons of the possible.” That phrase from my book is no metaphor. Those horizons are so real that, for a future generation of children and their parents, they are quite literally a matter of life and death. For this reason, which utterly transcends politics and this year’s election, the sudden prominence of the Palins is, in the deepest sense, an extraordinary act of public service.

I also saw a letter to the editor in the Chicago Tribune by Mark Mostert, codirector of Regent University’s Institute for the Study of Disability and Bioethics. He wrote:
For years advocates fought to have people with Down syndrome brought from the shadows of institutionalization to their rightful place in our communities and lives. Lately, though, there are fewer and fewer of them around.

Why? Because the vast majority of in-utero Down syndrome diagnoses result in abortion. The numbers don't lie: When it comes to people with Down syndrome, they're considered defective. The message is clear: We'd rather just not have them around.

Good for Palin for standing up to the pressure from the medical community, which almost always recommends termination of the pregnancy.

Good for Palin for making the statement that needs to be made much more often: Genetic discrimination against people with Down syndrome must stop. Now. No excuses.

Last night, Palin introduced Trig alongside her other children, saying, "We were so blessed in April; Todd and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig." Then she said, "Children with special needs inspire a special love. To the families of special-needs children all across this country, I have a message for you. For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."

After Palin's speech, Mostert posted this blog entry saying, "She faced the camera squarely and said what no other politician on either side of the aisle has, so far, been willing or able to say: That all people with disabilities matter, that they will no longer be ignored. That they have a rightful and unmistakable place at the table of civic life. That they are, before anything else, Americans."

Not only are they Americans, more significantly, they bear the image of God and thus have inestimable value and worth. Jesus loves the little children, all the children of the world, regardless of chromosome count or disabilities. Children with Down syndrome, like Trig Palin and Elijah Hsu, are people deeply loved not only by their families, but by God. And our society is richer for their presence.

This blog post should not be taken as an endorsement of Palin or the GOP ticket. But whatever one thinks of Palin or her politics, I think some of the most significant aspects of last night's speech were the camera shots of little Trig, alive and well. This boy's very existence has brought disability awareness, special needs and prolife issues to the forefront of a national discussion. I am hopeful that regardless of what happens this election, our country will become a better place for and with people with disabilities.

14 comments:

Gavin said...

Hey Al...

I know you hesitate to make any political statements, but clearly you are aware that the other side of the ticket (Obama/Biden) has a clear stance on the issues of life and choice and abortion. Obama is simply the most liberal candidate ever to run for national office, when it comes to abortion. Clearly our nation will not progress on the issues you mention in this blogpost if he is elected. For goodness' sake, he voted (3 times) to NOT protect babies who are born who were supposed to have been aborted. He not only will protect the choice of mothers to abort babies in utero at any time during pregnancy (including the genetic screening scenario you experienced, and of which we were also made aware during our own fertility issues), he quite apparently also means to protect the right of women to murder BORN babies who were meant to have been aborted! It's a matter of public record.

Don't feel like you can't make a political statement when it comes to life issues (and it doesn't have to be a democrat/republican thing - it just is what it is). By NOT making a statement in your blogpost, you are being less than bold - be bold. Obama is directly contrary to the point of view you just espoused - at the very least, his policies and record work counter to everything you just blogged about. You should just say so, rather than giving a disclaimer about not making political statements. You might even feel better afterward!

Al Hsu said...

Thanks, Gavin. I actually don't mind being "less than bold." :-)

I'll probably post a separate entry later on my various thoughts about the election overall. It was too much to get into here, and I know I have readers from all parties and perspectives, so I didn't want to get into all of it just yet.

Gavin said...

I know. And you are probably less abrasive than I tend to be, which is probably a good thing! But in this case, it seems like the candidates themselves (namely their positions) have made it quite clear where they stand on the very issue you raise. So it seems natural, at least to me, even if done less abrasively than i would do it, that you would at least draw those positions out a bit.

I'm looking forward to your later treatment of this "life" issue. And I completely understand your intention to be sensitive to the various readers, knowing that we come from different parts of the spectrum.

Micheal said...

Al,
Thank you for this post. Ever since Palin was picked, I've been wondering about your thoughts. I have been very disturbed by some of the reactions to young Trig - for example, Hanna Rosin on Slate.com, who lumped together Trig's birth with Palin's daughter's pregnancy as signs of domestic disorder, as if Trig's Down syndrome were somehow morally wrong or someone's fault. I have never really bought into the "culture of life" vs. "culture of death" polarization, but I'm starting to reconsider after hearing and reading so many people cavalierly suggest that this young boy - the same age as my own 4-month-old son - should never have been born.

Eddy said...

Al,

Thanks for your thoughtful post. I'm intrigued and disheartened by the way that the media, pundits and campaign surrogates have been conversing about Palin and her family. And thanks for giving us a broader perspective on the choices people make when their babies are "prenatally diagnosed with Down syndrome."

I find myself learning more and more about life, faith and love when I encounter the diversity of God's creation. And little Trig and Elijah highlight a level of grace and love that no sermon could capture!

Jenell Paris said...

Lovely. That shot of Trig was dear - made me reflect on how we all would be better people if we saw Down syndrome babies more often.

Looking forward to your column.

Maria said...

Al,
I still remember the comment a physician-turned-Benedictine monk made to a friend of mine who was debating the value of in-utero testing. He told her, If you're going to have a child with special needs, wouldn't you want to be prepared? I held onto that statement through the process with both my late-in-life pregnancies. Turns out my kids have just all the regular needs, but it was empowering to be able to tell my doctors that we were interested in testing, not so we'd be able to avoid a child with "defects" but to prepare ourselves to care for him or her.

Ted M. Gossard said...

Great point, and important, so important. I'm not leaning their way, I guess (so a little in the air), but I so appreciate you pointing this out. It is all but lost I'm afraid, as you point out here, and I'm afraid has been lost over in Europe.

Julana said...

As the mother of a child with Down syndrome, I found the media reaction to Palin's nomination last week very tough. I felt very protective of her and her family the night of her speech.

An advocacy list I'm on has had a heated discussion over the the virtues of both parties: one protecting the unborn, the other working to get more supports in place for those who have disabilities. Several members are quoted in the current Newsweek article "Trig's Promise."

We are going to want good relationships with friends and neighbors who have opposing views, no matter which candidates win in Nov.

Maureen said...

I am the proud grandmom of a 4 year old granddaughter with Down Syndrome. Down Syndrome is not a disease. One extra chromosone is all the divides the said, "normal". Madison is no different from her peers. She laughs, crys, plays, goes to school, just like every other child. I could never imagine my life without her. Her kisses, loving hugs, and her, "I love you Mom-Mom". To think of her being aborted, the love I would have never known.

My older son became disabled from a medical accident. Madison helps him, gets him his "pepsi and a straw", she brushes his hair and gives him his toothbrush. She tries to help him dress. She is 4, with Down Syndrome.

Charlene said...

It's easy to be and advocate AFTER you are forced to be one because you have disabled child. But did Ms.Palin ever advocate for the handicapped BEFORE a Downs Syndrome child was born to her OR were they just as invisible to her as they seem to be to every other politician?

Don't you just wonder? I know I do.

Friar Tuck said...

Thanks for being open and informed enough to share this valuable information with us.

Rob said...

I have worked in the field of developmental disabilities for 35 years and have a spinal cord injury.

I have been a strong advocate and involved in public policy development for my entire career. Ddo not be fooled by a politician saying that they are an advocate. Look at their record. Neither Mc Cann nor Palin have done anything significant for persons with disabilities nor is is likely that they ever will.

The Republician Party has fought disability legislation at the federal and state level for decades. They support keeping people with disabilities in institutions not the community. They have cut housing subsidies, kept Supplemental Security Income at 17% of median income and have not passed legislation to allow people with disabilities to live outside of nursing homes. Enforcement of ADA and 504 regulations has been abysmal.

Please go to Barrack Obama's website to see a thoughtful and inclusive disability policy and then compare it to Mc Cann's disability policy on his website. There is a light year of difference. Obama understands the problems and solutions, Mc Cann/Palin are just giving lip service the disability community for votes. Don't get your hopes up for the Republicains to change decades of bad disability policy. When I speak to parents of children with disabilities and they ask what states have the best programs and services, I have to answer the blue states.

To have a more d=effective disability policy we have to spend money to alleviate housing and services waiting lists. This has not been a priority for state and federal budgets. If Palin is really an advocate, how come there are long waiting lists for services for persons with disabilities in Alaska? Check your facts before casting your vote.

Rob

Billy said...

The political scene sure is heating up. Many people are debating whether this was an honest promise or a strategic ploy.

Do you think Palin would follow through on her promise to advocate for children with special needs? What about adults with special needs?