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‘Stand tall — together’

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. When I was in middle school, Robert Kennedy went on TV after inspecting one of those places; he called it a “snake pit” and called for investigation and reform.

I didn’t know any of that then, of course. What I somehow did know, I think, was that people with intellectual disabilities were perceived as not like us. They didn’t go to my school and if they lived in my suburban neighborhood – and doubtless, some must have – they were not discussed in polite company or welcomed into our community.

I tell you these things not to frighten you, but to tell you how the new state of the world looks to those of us who’ve been around long enough to qualify for AARP discounts. There is, thank goodness, a fundamental difference between that time and this. Those of us here today should be grateful to many people, most of whose names we don’t even know. We are blessed beyond measure at being able to follow them, and to benefit from their struggles.

Thanks to their good work, most of those old institutions are now gone, closed by reformers who, like Robert Kennedy, recognized their inherent inhumanity. Schools that used to keep our people out now welcome them, thanks to the passage of federal legislation, and educators are working on developing ways to help all kinds of kids learn and grow.

Wonder of wonders, people with Down syndrome are now growing up in a world where they can attend their neighborhood schools, participate in school activities and build solid friendships. I marvel to see all the adorable young people here today — healthier than ever before, increasingly getting the medical care they need and building lifespans that are approaching those of the rest of the population.

With the social and legal advances of the last few years, more and more people with Down syndrome are finishing high school, and some are moving on to postsecondary education. Some are getting jobs, and many enjoy volunteering and participating in the decisions that affect their lives.

Their dreams for themselves are like anyone else’s: purposeful work, good friends, and something fun to do on the weekend. Thanks to the hope and vision and tireless work of thousands of unsung heroes like you, a lot of those dreams are now beginning to come true.

Let’s all rejoice today in what we have been given by those who have gone before us.

And yet – perhaps in many ways we have not come as far as we might like to think.

In the years since Margaret came into our lives, I’ve come to a realization. No longer could I afford the comfort of remaining ignorant of the social forces that affect her life, and to the challenges we all face together.

So a couple of years ago, I started a website compiling mainstream news coverage about issues relating to disabilities. I had no idea what I’d find. While there is much cause for hope, there is also much that is disturbing. While we’ve been doing wonderful work getting our young people ready to meet the world, it seems, we still have a lot of work to do to get the world ready to welcome them.

Let me share with you some of what I’ve been learning.

In state capitols around the nation, lawmakers are struggling to resolve catastrophic budget shortfalls. What’s often the first thing on the chopping block? Services for people with disabilities.

In Texas, law enforcement authorities are pursuing state employees who were caught on video staging “fight clubs” between residents inside a state institution for people with intellectual disabilities.

A related investigation by the U.S. Department of Justice found widespread evidence of abuse, neglect and violation of residents’ civil rights in that state’s 13 institutions, as well as 53 unexplained deaths in the past year. Yet the institutions remain open, and state legislators have publicly pledged their support.

In Iowa, authorities found that 21 men with intellectual disabilities had been held for decades in substandard and unsafe conditions in an old bunkhouse. They were being paid as little as 44 cents an hour for their work in a meat processing plant. Disability rights advocates say this case is the tip of an iceberg.

We rejoice that our young people are increasingly being supported in school, and are completing high school better prepared than ever before. But what do we know about what may happen to them after they finish school?

A parade of news stories these days features parents who describe those post-school years as a tumble off a cliff. Students who have finished their education and are ready to be employed, productive and independent instead find themselves caught in a bureaucratic web that doesn’t provide the support services they need.

It’s estimated that seven hundred thousand people with disabilities are languishing on government waiting lists across the country right now – waiting for services that they need and are entitled to get. Many have been waiting for years. Some have been waiting for more than a decade.

Without a coherent federal policy for providing community services and support, millions of families across the country are left to take care of their loved ones on their own. Parents worry: who will care for their adult children after they die?

Across the country, people with disabilities continue to be largely shut out of the workforce. Experts estimate that fewer than 20 percent of adults with disabilities are employed, even though research shows they can be reliable and effective workers when given support and matched with appropriate jobs. During the current economic downturn, that situation is certain to get much, much worse.

The consequence of this unemployment? Poverty, isolation and depression. Without opportunities for work, how can a person move off the sofa and become the star of their own life story?

Then there is the issue that has drawn the most media coverage of our little community in recent years. Prenatal testing for Down syndrome was one of Time magazine’s top science stories for 2008. Just at the moment in history when people with Down syndrome are healthier, better educated and doing better than ever before, companies are racing to market with a new generation of prenatal tests that promise a safer, less invasive way of spotting chromosomal differences early in pregnancy. The stakes are high: It’s estimated that the prospective worldwide market for such a test is something between $3 and $5 billion annually.

Disability advocates are worried. There hasn’t been any organized effort to ensure that doctors give pregnant women accurate, up-to-date information about Down syndrome during the prenatal testing process up until now, and there’s no indication there will be any time soon.

In 2007, the American College of Obstetricians and Gynecologists recommended that all pregnant women be offered prenatal testing for Down syndrome. Now, more than two years later, ACOG has still not produced a single page of guidance for doctors on how to talk with prospective mothers about people with Down syndrome, not one page about their experiences, their accomplishments, or about the rich and rewarding lives that are possible for people with disabilities.

Billions of dollars worth of tests, and no informed consent. How does this affect public attitudes? Does it create a presumption that people like our family members are expendable, that they impose an unwanted cost on society? To me, the absence of true informed consent in the prenatal testing process seems to reinforce erroneous beliefs that a life lived with a disability is one that lacks value, that less able is less worthy. This view, as widely held as it is unexamined, places countless barriers in the path of our family members.

And while you’re pondering all the barriers that our family members face as they seek to achieve their full potential, think about the one that’s drawn the most heated discussion on my website lately. The President of the United States went on Jay Leno and made a joke in which Special Olympics athletes were the punchline. And the audience laughed right along.

The president, of course, promised during the campaign to be a strong advocate for people with disabilities. Yet through his casual and thoughtless words, he implicitly endorsed the negative attitudes that keep young people with Down syndrome from getting jobs and taking their rightful places in society.

So where does this leave us?

When Margaret was small, one of her doctors sought to reassure my husband and me by saying he hoped research would soon unlock the secrets of Down syndrome. How soon? we wondered. Oh, in maybe twenty years, he said, “they” would figure it out.

I wonder now, have I – have we – been somehow waiting for “them” to do something – to push for needed services, to find jobs, to counter the biases that are being reinforced when informed consent is absent in prenatal testing, to reject the casual repetition of language that hurts and stigmatizes?

Several weeks ago I was fortunate to come along when Amy Allison and Bridget Murphy led a group to Washington to lobby Congress about things that matter to people with Down syndrome and their families. There they were, more than 300 people from 35 states, embodying a single message: that people with Down syndrome are valuable, worthwhile people who are respected and cherished members of happy families

History was made that day. From one end of the Capitol to the other, congressional representatives and Senators opened their doors and listened intently to people with the distinctive features of Down syndrome. Why? Because in numbers there are votes. And where there are votes, things begin to happen. There is, we hope, a shift in the air around us. “They” can become “we.”  Isolation can give way to teamwork.

Just as I no longer have the luxury of ignorance, none of us can afford to focus intensely on our beloved family members and ignore the forces that are at work in our broader society. Working together, we can maintain the progress of those who came before us, and carry our vision of hope and human rights even farther. Working together, we have a responsibility to find ways to reshape our world both for the benefit of our family members and those who will follow us.

All of us here have had the good fortune to share our lives with people who constantly remind us of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points alone are not a good predictor of personal happiness or quality of life.

As long as the rights and dignity of those people are not assured, we have work to do.

– To assure that adults with disabilities have the services they need to live their lives with dignity in the settings of their own choosing;

– To assure that adults with disabilities have meaningful work that allows them to reach their full potential;

– To assure that new and expectant parents are receiving up-to-date, accurate information about Down syndrome; and

– To assure that our collective use of language is respectful of people with disabilities of all kinds.

Almost two years ago, at the national Down syndrome gathering here in Kansas City, I was honored to be a keynote speaker. We talked about the importance of rededicating ourselves to advocacy on behalf of those we love. “Stand tall,” I said then.

But I realize now that I didn’t go far enough. So let me amend that now.

Let’s not just stand tall. Let’s stand tall together.

9 Responses to “‘Stand tall — together’”

  1. Jill Boster Says:

    Wonderful! It was great to meet you this past weekend.
    We are all standing a little bit taller already … because of you! Thanks!

  2. terri Says:

    This is an awesome speech. So much has indeed been accomplished and there is so much to be done. Together is the answer. Thank you!

  3. Jennifer Varanini Sanchez Says:

    Amazing! Thank you for all that you do for all of us.

  4. Jessica Says:

    Bravo! Wish I could have seen it delivered live.

  5. jennifergg Says:

    beautiful, then and now!

    xo

  6. Amy Allison Says:

    Thank you so much for coming to Kansas City! We certainly kept you on your toes for two full days running from Children’s Mercy Hospital speaking to medical residents to KCUMB University speaking to medical school students and then on to the conference Saturday for your keynote and breakout in the great blizzard of 2009. I know our medical professionals, students, parents, educators and service providers were touched and educated by your remarks. Here’s hoping the Dean helps us coordinate a presentation on prenatal testing and Down syndrome for the Midwest Bioethics group here in KC. If he does, we will gladly bring you back!

  7. Kleidy Says:

    Perfectly said “Let’s stand tall together”. Patricia, thank you so much for these encouraging words!!!, you are doing a remarkable job. :D

  8. Scott Says:

    Pat,

    My wife and I were welcomed to the “club” 5-1/2 years ago with the birth of our daughter.

    We are very appreciative to all those who have gone before us. I hope that I can make things easier for families who will follow us.

    Thanks for all that you do.

    Scott

  9. Nancy Iannone Says:

    Thoughtful and informative. Thanks Pat.

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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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