Oct. 1, was the start of National Down Syndrome Awareness Month. The Obama campaign website posted its “Letter of the Week” from Brittany, a 25-year-old with Down syndrome. And, predictably, right-wing commentators expressed outrage. But their concerns were misplaced.
Brittany wrote to tell President Obama about how she has a job, pays taxes, and likes the First Dog, Bo. Good for her. Down syndrome is an equal opportunity genetic condition, affecting individuals of all ethnicities, social status, and, yes, political persuasions.
The Obama campaign featured Brittany as “A Face of One of the 47%,” a reference to Gov. Romney’s infamous remarks suggesting almost half the country does not pay taxes. This is what conservatives found objectionable.
In the measured tones of today’s political discourse, Michelle Malkin’s website, Twitchy, ran the headline: “Despicable: Obama uses girl with Down syndrome as cudgel to beat Romney.” Several others criticized the Obama campaign for exploiting Brittany. This was their objection. Apparently, a campaign should not use a letter voluntarily sent in by a mid-20s woman if that woman also has Down syndrome.
This arrogant view continues the infantilization of fellow citizens who should receive the same respect as everyone else. As a father, I hope someday my daughter Juliet, who is endowed with Down syndrome, may write her own letter to the president, if she feels so inclined. The debate should not be over whether political campaigns should feature individuals with Down syndrome — they should, just like every other American. Instead, the debate should be over what current policy says about those with genetic conditions like Brittany’s and Juliet’s.
The day after Brittany’s letter appeared, three of Kentucky’s largest Down syndrome support organizations issued a press release asking for that debate to begin at the vice-presidential debate on Thursday. Leaders from Down syndrome organizations across the state hope that debate moderator Martha Raddatz will ask Vice-President Biden and Congressman Ryan the following question:
“Should it be U.S. policy for Down syndrome to be prevented through prenatal testing?”
As the press release explains (and has been written about for the past year), under the health care reform law, regulations require no-cost preventive care for women. Included in that regulatory mandate is no-cost prenatal testing for genetic and developmental conditions. Down syndrome is both: a genetic condition that causes developmental delay. As a result, current U.S. regulatory policy states that genetic and developmental conditions, like Down syndrome, should be prevented through prenatal testing. That is what should spark outrage across party lines. How can the U.S. government say to any group in America that those like them should be prevented from being part of our society?
What is surprising is that we already debated this issue in Kentucky. Just last year, when the Medicaid managed care contracts were being discussed, an initial version also required prenatal testing for Down syndrome, but it did not require that expectant mothers receive accurate information about Down syndrome and referral to parent support groups. Harold Kleinert, director of the University of Kentucky’s University Center for Excellence in Developmental Disabilities and board member of the Lexington group, recalled that “through public debate we changed that, but now the issue is at the federal level with little to no public debate taking place.”
At the first presidential debate, both candidates talked about how their policies would treat individuals with disabilities, specifically naming those with Down syndrome, but no mention was made of the policy to prevent them through prenatal testing. This is why Raddatz needs to shed light on this issue in her questioning of the vice presidential candidates.
Nancy Combow, vice president for the group serving the Bowling Green/Franklin area, says it rather plainly, “I have a 6-year-old son with Down syndrome. I want to know why U.S. regulations now say prenatal testing should be used to prevent those like him from being part of our society. It’s a question that needs to be asked.” Indeed it is, and hopefully Raddatz will ask that question at Thursday’s debate.
Mark W. Leach is an attorney from Louisville. He is the president of the board of directors for Down Syndrome of Louisville. The views expressed here are entirely his own and not to be attributed to any associated organization.