Writing in the Minneapolis Star-Tribune, David M. Perry says he had hoped that Trig Palin’s presence in the limelight might  bring hope to families of children with disabilities. Instead, he says, the national conversation has focused on Sarah Palin’s decision not to have an abortion — a focus that isn’t helpful to families of kids with disabilities, nor to expectant parents who are fearful about disability.

Choosing life is not about what happens in utero, but about what follows. Choosing life is about knowledge. It’s about training doctors and nurses how to talk to expectant parents. Most of all, it’s about providing an antidote to fear by changing the perception of disability. That’s where Trig’s voice, even before he learns to talk, needs to be heard. But his voice is being drowned out by the partisan hubbub of people from both parties who are focused on the single issue of abortion. Let’s change, or at least expand, the message.

What I want is a serious national conversation about raising children with disabilities — the way that government, schools, churches, doctors, HMOs, and most of all friends and families can help us.

… Let’s talk about the federal mandates that order, but do not fund, early intervention. Let’s talk about universal health care and special education. Let’s talk about how to help our children find meaningful lives as adults. Most of all, let’s talk about ways to ensure that everyone sees people with Down syndrome as, first and foremost, just people. Then we can get to work on the syndrome.

David M. Perry is the father of a 2-year-old boy with Down syndrome and an assistant professor of history at Dominican University in River Forest, Ill.

By Dennis Teti, writing in the National Review:

What is it about powerless infants that brings out the best and the worst in human beings? I ask, naturally, because of the astonishing responses to Trig, Sarah Palin’s baby, who has Down syndrome. What can we learn from the warm public response — and the antipathy of powerful elites?

… the rhetoric about the “freedom to choose” has become less convincing with time. In terms of popular opinion, in the U.S. at least, those who would use that slogan to compel women to abort children with health conditions are farther away from their goal now than they were ten or 15 years ago. The surprising and overwhelming public embrace of Sarah Palin testifies to the growing understanding of the implications for the unborn of the true rhetoric of equal rights.

See also:

• Trig Palin can change the pace, by Jillian Bandes in Human Events
• Surprised by a disability, by Al Hsu in Christianity Today

Susan LoTempio, writing on the website of the Poynter Institute, offers journalists a list of questions that should be posed to politicians about issues of concern to the more than 54 million Americans who have disabilities. “Unfortunately, it’s rare that a reporter asks a disability-related question, but it’s time to start,” she says.

[No such questions were asked during last night's vice presidential debate. Palin's pledge to "work with families of children with special needs" was mentioned in passing but not explored.]

Among the questions on LoTempio’s list are queries about health care; the high rate of unemployment among Americans with disabilities; the lack of funding and enforcement for the Individuals with Disabilities Education Act (IDEA); low graduation rates for students with disabilities; services for veterans; lack of accessible and integrated housing; Medicare and Medicaid regulations; and community-based services and supports. An excerpt:

Digging deeper means not just reporting that vice presidential candidate Sarah Palin has a baby with Down syndrome, but also reporting on what families in that situation need to raise their children. For many families, the need is great.

… You’re not covering the presidential campaign? Politicians seeking local and state offices should also go on the record on these issues.

LoTempio is the readership editor at the Buffalo News. The non-profit Poynter Institute is a school for journalists, future journalists and teachers of journalists.

(Photo from Poynter.org)

Writing in The Lancet (subscription required), Kelly Morris says life expectancy for people with Down syndrome has improved dramatically over the past half century, yet research to improve health, cognition and learning among people with Down syndrome has not kept pace. Many in the field say such research has been neglected and underfunded.

Morris says NIH funding for Down syndrome research stands at $17 million this year, down 26 percent from $23 million in 2003. Experts say the NIH is focusing its immediate attention on mouse models, rather than on studying ways to improve the lives and cognitive function of people who have the disorder. “Many would argue that these priorities are the wrong way round,” says Frank Buckley of Down Syndrome Education International.

Writes Morris:

… A shift in focus towards studying variables in people with Down syndrome, especially those that affect learning and cognition, would be most welcome. Such research could also point to differences in the biology of Down syndrome that can promote further useful, straightforward interventions, which is important since specific drug treatment can require years of further investigation.

The article appears in Vol. 372, September 6, 2008.

Minette Marrin, writing in the [UK] Sunday Times, draws a connection between Baroness Warnock, who said people with dementia have a “duty to die”, and Joanne Hill, who drowned her daughter because she was apparently ashamed of the girl’s cerebral palsy.

It ought to be obvious that what Warnock said and what Hill did was wrong and that one leads directly to the other. The thought is father, or rather mother, to the deed. What’s alarming is that Warnock has had official influence on public policy in such matters. All the same, I think there is room for more compassion and careful consideration in both cases.

… Having grown up close to such questions, I’ve come to realize that shame is not only natural but understandable. One feels at a deep level like a failure as a mother or father. Men often feel this much more strongly than mothers and don’t want to be associated with a damaged child. Well-adjusted people are able to put this shame behind them and I think it’s a mark of a good person in a civilized society that she or he can do so. But it may be difficult. A poorly adjusted person may find it impossible.

… None of this makes [Hill] innocent of murder, but it is ground for some compassion and understanding rather than righteous indignation. I suspect the indignation comes from an unwillingness –- an inability -– to confront the inescapable harshness of disability and the painful truth that it is indeed a burden.

See also:

Now our intellectuals think the old and frail have a ‘duty to die’, we are on the path to barbarism, op-ed by Melanie Phillips in the [UK] Sunday Mail

Do the demented have a duty to die? op-ed by Ken Connor on townhall.com. Connor is chairman of the Center for a Just Society

Writing in The Progressive, Kathi Wolfe says people with disabilities want to hear specifics about what candidates are prepared to do to address issues like health care, education, employment, access and technology. Wolfe, who is blind, would like to see the campaigns talk about:

• Assuring health care coverage for people with disabilities,
• Assuring full funding for education for people with disabilities, and
• Removing barriers to employment that leave 70 percent of people with disabilities without jobs.

In this presidential campaign, the candidates have an opportunity to pay more than lip service to our issues. I hope they will seize it.

From the [Portland] Oregonian:

Angela Jarvis-Holland and Abigail Braithwaite say Sarah Palin has boosted the awareness of people with disabilities during this campaign, but bipartisan and community-based efforts are needed to bring about real improvements.

Inclusion is about diversity, and the acknowledgment that this world is made up of people of all abilities, each with unique strengths and interests. When the community takes as a given that people with disabilities are entitled to the same opportunities as every other citizen, then we will have the support we need to bolster the good policy that already exists, and to encourage the people in positions of power to become our friends, to take up the issues that matter to us and create more, better policy in Washington.

So what are we parents asking for? We are asking for everyone — from presidential candidates to our next-door neighbors — to ask yourselves what you are doing to be a friend to people with disabilities.

Jarvis-Holland and Braithwaite are members of the Northwest Down Syndrome Association.