Do parents of kids with disabilities deserve admiration? Pity? Are they courageous? Self-important? Preachy? The public debate on these weighty topics has been raging for the past month over at the New York Times’ Motherlode blog site, and shows no signs of letting up.

It all started when Amy Julia Becker wrote a guest blog about her decision not to undergo prenatal screening or testing for Down syndrome during her third pregnancy. Becker and her husband, who have a 4-year-old daughter with Down syndrome, concluded that they didn’t need the testing because they had no intention of terminating a pregnancy if they found a nonstandard number of chromosomes.

The post triggered a host of reader comments that reflected society’s ambivalence toward people with disabilities. While many of the comments were supportive of Becker’s decision, some were critical and many focused on the perception that a person with a disability poses an unwanted “burden” on the family and the society at large.

Becker followed her initial NYT post with a second one, Is it harder to have a child with Down syndrome? In that post, which also drew a wave of emotional comments, Becker noted that her biggest stress comes not from her daughter’s disability but rather from the ignorant and negative judgments society makes about people who wear the distinctive signs of Down syndrome on their faces. An excerpt:

I have the privilege of being the mother of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.

And now for today’s installment on Motherlode: Guest blogger Stacie Lewis, whose 18-month-old daughter May has severe brain damage, says she shouldn’t be considered a hero just because her child has a disability. (Needless to say, emotional comments have begun to flow.) An excerpt from Lewis’ post:

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.

Readers, what’s your take?

Writing on the AOLnews website, supermodel and lifestyle guru Kathy Ireland says funding for research into Down syndrome has been consistently reduced until it now accounts for less than 0.01 percent of the National Institutes of Health’s annual research budget. This must change, says Ireland. Her niece Polly has Down syndrome.

We are on the verge of medical breakthroughs with Down syndrome, and we can’t let it fall from our doctors’ hands.

… We are in a race to help those with DS. We must run side by side with them, assuring them that the Down syndrome funding cuts, which the National Institutes of Health has faced, are reversed now.

Disability advocate Dave Hingsburger uses Jennifer Aniston’s recent gaffe (calling herself a “retard” during a televised interview)  as an opportunity to examine the word’s implications in modern society. His conclusion: The word is an unacceptable attack on a group of people who have historically been marginalized, stigmatized and oppressed. An excerpt:

The people who ‘ARE’ what the ‘R’ word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

… The ‘R’ word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Editorial writers at the [Bergen County, NJ] Record offer praise for a new state law that removes outdated terminology like “mentally retarded,” “feeble-minded” and “physically or mentally defective” from New Jersey law and rulebooks. An excerpt:

Talk about a revolution. Within little more than a generation, we’ve advanced from assuming lesser futures for citizens with disabilities to requiring their full participation in public schools and workplaces. We are learning more about how to maximize the health and talents of every one of us, all the time. Though there is much more to be done – housing for adults with disabilities is a shameful example – the results already are stunning. Consider the life expectancy of an adult with Down syndrome, which has doubled to more than 50 since the mid-1980s.

These victories arrived after years of lobbying by families who refused to hide. They came after our nation changed its ideas about the rights and the potential of citizens with disabilities. They came after the cruel jokes stopped and serious conversation began.

“Words matter – it’s that simple,” said Senate President Stephen Sweeney, D-Gloucester, whose daughter has an intellectual disability.

Indeed. And if today’s accepted terms become outdated, if families affected by disability demand new words, we will rewrite the laws and rulebooks. Again.

See also: Opponents of R-word win key legislative victory in New Jersey — Fox News

Earlier post here.

Related posts here.

By Tom Harkin in Politico.com:

… at its heart, the ADA is simple. In the words of one activist, this landmark law is about securing for people with disabilities the most fundamental of rights: “the right to live in the world.” It ensures they can go places and do things that other Americans take for granted.

I will always remember a young Iowan named Danette Crawford. In 1990, she was just 14. She used a wheelchair, and lived with great pain. But she campaigned hard for the ADA. When I told her that the ADA would mean better educational opportunities, and prevent workplace discrimination, Danette said: “Those things are very important. But, you know, what I really want to do is just be able to go out and buy a pair of shoes like anybody else.”

Two decades later, people with disabilities can do that — and so much more. The ADA has changed America in ways largely invisible to most citizens, but profoundly transformative for tens of millions of Americans with disabilities.

… The ADA has broken down barriers, created opportunities and transformed lives. Today, we recognize that people with disabilities – like all people – have unique abilities, talents and aptitudes. Our nation is better, fairer and richer when we make full use of those gifts. 

The ADA is America at its very, very best.

Sen. Harkin (D-Iowa) is chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee.

When her now-adult daughter was born, Anne Ford writes at AOL.com, society’s answer to the problems of people with disabilities was to avoid acknowledging them.  That all began to change when President George H.W. Bush signed the Americans with Disabilities Act twenty years ago, she says. In that moment,

… we as a country told our disabled citizens that they too belonged to our nation’s family, and that their skills, their talents and their lives were valued.

Disabilities came out of the shadows. People began to talk openly and understand, and most important, to accept. Today the idea of a person in a wheelchair stopping conversation and getting looks of disapproval for entering a restaurant is inconceivable.

As for learning disabilities, more and more young people with LD are successfully transitioning out of high school into the workplace or college because they have access to accommodations such as extra time for tests and note takers. Before the ADA, these accommodations did not exist.

… An estimated 15 million Americans have a learning disability, but thanks to the ADA, we have learned that with understanding and acceptance, with simple and usually inexpensive accommodations and with the protections afforded by the ADA, people with disabilities can succeed.

Author Anne Ford is the chairman of the National Center for Learning Disabilities. She has written three books about her journey as the mother of a daughter with learning disabilities.

Writing in the Atlanta Journal-Constitution, Ruby Moore and Eric Jacobson call on Georgia to end seclusion and restraint in the state’s schools and turn instead to the use of positive behavioral supports (PBS).

Moore and Jacobson urge the state’s board of education to strengthen a proposed new rule by adding requirements for oversight, data collection and analysis, which they say are necessary to prevent the tragic deaths of more Georgia schoolchildren.

An excerpt:

Georgia can be at the forefront of states that are ending the practices of seclusion and restraints. We hope others will attend tomorrow’s board of education meeting to urge the adoption of a stronger rule that includes accountability.

Then we can create schools that are safe for children and teachers, provide effect oversight and support and, ultimately, protect our children. We should no longer send our children to school fearing that we may never see them return.

Congressional investigators last year found widespread evidence of the use of restraints and seclusion of students by school staff around the country, most of it involving students with disabilities. Some of the cases ended in death.

Ruby Moore is executive director of Georgia Advocacy Office. Eric Jacobson is executive director of the Georgia Council on Developmental Disabilities.

Earlier posts here.