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‘Stand tall — together’

Sunday, March 29th, 2009

Text of remarks

by Patricia E. Bauer

delivered at the annual conference of

the Down Syndrome Guild of Greater Kansas City

March 28, 2009

It’s more than a quarter of a century now since Margaret arrived and our family’s journey began, a journey that started in isolation, seemingly without history. As far as we knew then, we were the first couple in the history of the world whose utterly adorable baby had gotten a diagnosis of Down syndrome.

My husband and I knew nothing about disability then and knew pretty much no one who did, and somehow we instinctively thought without discussing it that we wanted to keep it that way. We didn’t know what we were up against, and we didn’t want to know, for fear that knowing might make us fail.

Later I learned that some doctors then were withholding routine medical treatment from infants like mine. In the month that Margaret was born, the great legal minds of the day were debating whether or not that was okay. Friends of mine at the newspaper were following this debate, I found out later, but couldn’t bring themselves to tell me.

The memories of those dark days fall away when I come into bright rooms like this one, full of hope and good cheer and the knowledge of allies made and battles won. I am humbled by your enthusiasm and encouraged by your shared sense of commitment. I salute your imagination, your willingness to learn and your generosity of spirit. Yes, indeed, we have come a long, long way in a very short time within the span of Margaret’s life, and of mine.

Of course, the tricky thing about being part of the disability community is that you don’t know you’re a member of the club until one astonishing day when it all becomes clear, and you realize that pretty much everybody ends up in the club sooner or later. But it took me a while to figure it out.

For the first decades of my life, I wasn’t consciously aware of what was going on. I didn’t know, for example, that the average lifespan of a person with Down syndrome in the year I was born was something like fifteen years, or that many – maybe most — people with Down syndrome in those days were sent off to live in institutions that were more like prisons.

One of those institutions was just a few miles from my home, a hulking stone pile behind huge metal gates. We kids held our breath whenever we rode past. (more…)

Books: ‘Fasten Your Seatbelt’ offers info for siblings

Wednesday, March 18th, 2009

Fasten Your Seatbelt, cover art

By Patricia E. Bauer

Kids whose brothers and sisters have Down syndrome — or any disability, for that matter — often find themselves interpreting their sibling to the world.

Yet how much do they really know about their brother or sister’s condition? And how do they cope with the personal questions, unwanted stares, and complicated emotions that often seem to go with the territory?

Co-authors Brian G. Skotko and Susan P. Levine have come up with some answers in their new book, “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.”

Skotko, a doctor at Children’s Hospital Boston whose sister has Down syndrome, and Levine, a social worker with Family Resource Associates Inc. in New Jersey, have been conducting workshops for brothers and sisters of people with Down syndrome for the past ten years. Along the way, they’ve been collecting siblings’ thorniest questions and developing thoughtful and knowledgeable answers for them.


Hot topics: Curtis L. Decker on Texas institutions

Wednesday, March 11th, 2009

Curtis L. Decker, photo from NDRN.org

“Why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?

– Curtis L. Decker

By Patricia E. Bauer

The news reports started coming out of Texas yesterday afternoon: Vulnerable men with intellectual disabilities were allegedly used and abused for their caretakers’ entertainment. Law enforcement authorities say a group of employees at the Corpus Christi State School in Texas repeatedly staged a “fight club,” compelling their charges to physically battle with one another.

The investigation began when someone gave authorities a cellphone that contained videos of the alleged abuse. As of now, seven state employees have been suspended from their jobs and the state has halted admissions to the campus.

Searching for background on the emerging scandal, we caught up with Curtis L. Decker. He is executive director of the National Disability Rights Network, the nation’s largest non-governmental enforcer of disability rights.  Decker is familiar with conditions in Texas’ institutions for people with intellectual disabilities because the NDRN has been investigating conditions and working with residents and their families for several years.

Q:. Based on your experience and observations, what can you tell us about what may be happening inside the institutions for people with intellectual and developmental disabilities in Texas?

Curtis L. Decker: There has been an absolutely demonstrated and documented series of abuse and neglect in these facilities, eight hundred staff fired over the last several years, numerous deaths, lots of complaints and lots of documentation of abuse and neglect. There has been nothing like this particular story, but why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?


Down syndrome advocates lobby on Capitol Hill

Wednesday, March 4th, 2009

DSAIA on Capitol Hill with Reps. Cathy McMorris Rogers and Ander Crenshaw, photo by Jeffrey Pomranka

By Patricia E. Bauer

When more than 300 Down syndrome advocates from 35 states gathered at the U.S. Capitol last week, their stated mission was to seek federal funds to help spread accurate information about prenatally diagnosed disabilities.

But for many the goal was much more personal: To put a human face on a condition they feel is misunderstood and even stigmatized by the general public.

Recent advances in medical technology, coupled with strong business incentives, have been driving a broad public perception that Down syndrome is largely preventable through prenatal diagnosis and selective termination.

These advocates, from 85 local groups and representing some 400,000 Americans with the condition, hoped to leave their elected representatives with a different impression. They want legislators to see their loved ones with Down syndrome as valuable, worthwhile people who are respected and cherished members of happy families.

“We want them to know that we are here, and we are striving to make sure that our kids are part of our community — not hidden away like in the past,” said Theresa Grant, a mom from Reno, Nevada, whose 11-year-old son Elliott has Down syndrome. “They are making strides and they are succeeding in school.”

Rep. Patrick Kennedy and Lydia Orso of the Down Syndrome Association of Greater St. Louis, photo by Jeffrey Pomranka “We can stand up for ourselves,” said Lydia Orso, a young woman with Down syndrome from St. Louis, at left with Rep. Patrick Kennedy (D-RI).  “We can be advocates and have a voice.”

Kennedy Brownback Bill

Representatives of Down Syndrome Affiliates in Action (DSAIA) called on Congress to allocate $25 million over five years to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, known as the Kennedy Brownback Bill.

The bipartisan measure calls for providing accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. It passed passed both the House and Senate without dissent and was signed into law last fall.


Hollywood performers unveil disability rights initiative

Monday, October 6th, 2008

By Patricia E. Bauer

LOS ANGELES — A coalition of performing arts unions today announced the launch of a major disability rights campaign to increase visibility and employment opportunities for actors, broadcasters and performers with disabilities throughout the entertainment and news media.

At briefings in Los Angeles, New York and Washington, leaders of the Screen Actors Guild, the American Federation of Television and Radio Artists and the Actors’ Equity Association said the campaign would work to reverse a history of exclusion and bring the world’s largest minority into the media mainstream.

“There is an alarming absence of people with disabilities in the media.  We are virtually invisible,” said “CSI” regular Robert David Hall (above), who uses prosthetic legs as a result of an accident 30 years ago. Hall, who serves as chairman of the tri-union committee of performers with disabilities, told a news conference at SAG’s Los Angeles headquarters that he plays one of only three disabled characters in recurring television roles.

“Kids and adults with all kinds of disabilities need to see positive images of themselves, and the world at large needs to see PWDs (people with disabilities) as the intelligent, talented and passionate human beings that we are,” he said.

SAG president Alan Rosenberg drew parallels between this effort and campaigns for civil rights protections for racial and ethnic minorities, women, lesbian and gay people, and seniors.

“The time for change is now,” he said. “Discrimination has to be challenged loudly, with a global effort to educate the public to the lack of inclusion and universal access in the entertainment industry.”


Congress OKs Kennedy-Brownback disability diagnosis bill

Thursday, September 25th, 2008

By Patricia E. Bauer

The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors.

Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.

Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities.

While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?

The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care.


Questions, we get questions

Friday, September 5th, 2008

By Patricia E. Bauer

Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.


About the Site

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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