Health knowledge made personal
Join this community!
› Share page:
Search posts:

Perfect follow-up post to "24 hour rule"

Posted Sep 12 2008 4:16am
Thank you to Annette at Bump on the Road for posting this speech given at the NDSC in August. I had to post it here too, considering what I had recently experienced.

by Patricia E. Bauer

Long ago, my husband and I thought we had the world figured out. We had
good educations, good jobs, nice offices, even preferential parking spaces. We
thought we had it made.

Then, a little more than 23 years ago, Margaret showed
up, providing us with the most important learning experience of our lives. Our
first order of business was trying to figure out this whole Down syndrome thing,
of course, but ultimately it dawned on us that the effect of an extra chromosome
here or there was the least of what we needed to learn. Over time, we came to
reevaluate our core values, and to understand that much of what we had been led
to believe – about what makes a family happy, what makes a life worthwhile — was

I’m sure I’m not alone in saying that for the first few years of
Margaret’s life we worked very, very hard to do everything we could to help
Margaret become “normal.” It was only later that we realized what most families
get to eventually: that “normal” wasn’t the point. Our real goal was to help
Margaret be Margaret. It was only by letting go of the concept of normal that we
were able to see our daughter as the delightful person that she truly is, not
obscured by some burdensome word, some arbitrary social ideal that had nothing
to do with any of us.

Like it or not, though, we have to admit that we as a
nation have been sold this concept of “normal,” and we’ve fallen for it.
Somehow, while the disability community was out of the room, the world of
medicine established a diagnosable standard called “normal” and now we’re all
trying as hard as we can to achieve it.

Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in
the United States and Canada that all pregnant women be offered prenatal
screening for Down syndrome. All pregnant women. Prenatal screening tests are
now well on their way to being standard of care. Insurance companies are
covering them. And since Down syndrome is not a condition that can be repaired
in utero, it must be fairly assumed that the purpose of this testing is to allow
– and urge — women to terminate their pregnancies, which is in fact what has
been happening about 90 percent of the time when Down syndrome is diagnosed

Let me just underscore that, to make sure we’re all on the same page.
Studies have shown that nine out of ten pregnancies in which there is a prenatal
diagnosis of Down syndrome end in termination.

This is a painful topic to talk
about, I recognize, and it’s made more painful by the very ironic fact that
these recommendations have come at a time when people with disabilities have
more legal protections than ever before.

Not only that, people with Down syndrome
are in general healthier and having a better quality of life than at any time in
history. This is the first generation to benefit from early intervention,
inclusion, improved health care and better educational opportunities, and they
are blowing up yesterday’s old data. Increasingly, they’re completing high
school, getting jobs, living more independently. Some are driving; some are
getting married. Imagine: I met a woman with Down syndrome the other day who was
part of a relay team that swam the English Channel. These are people who are
living full lives and making contributions to their communities.

We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And
just the other day, self-advocate Audrey Wagnon delivered the same message in
her speech to the full NDSC convention. Here’s how she said it: “I’m having the
best life ever!”

But – oddly — we live in a time in history in which the faces of
our loved ones have come to symbolize something in the public mind that is very
much at odds with our life experience. People see our family members and think
what they’ve been taught to think. They think our children are tragedies. Yet we
who are privileged to live with them know that, despite some of the frustrations
of day-to-day existence, our lives are also filled with possibility and love and
joy.So why the disconnect between our lives and society’s vision of them?
Perhaps we should start by acknowledging the obvious: prejudices, biases and
fears of disability run deep in our society, nourished by years of history and
reinforced among other things by ignorance, gaps in the healthcare and
educational systems and negative media images.

Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.

Among other things, they fear that the financial burden would crush
them or that they wouldn’t be able to get a decent education for their child.
They’re afraid, too, that they would be held accountable for having a child with
a disability, and that there would be people who would blame them for failing to
prevent the birth of such a child. They are afraid of stigma and ridicule.
Sadly, these are not unreasonable fears.

But that’s only one piece of the puzzle we face. Here are few more:

  • – Puzzle piece number two. Prospective parents are
    suing their doctors if they don’t get a so-called “perfect baby,” leading to
    skyrocketing insurance costs and doctors who want to run every test possible to
    prevent litigation. Not long ago, a Florida jury awarded a couple more than $20
    million because their doctor failed to warn them that their son would be born
    with a genetic syndrome.
  • – Puzzle piece number three. Physicians, nurses and
    other health care providers are giving their patients negative, outdated, biased
    or incomplete information about Down syndrome, depriving them of the ability to
    make their own informed choices based on accurate information instead of
    negative stereotypes.
  • – Puzzle piece number four. Financial demands on doctors
    mean they have to process more and more patients in less and less time, giving
    them scant opportunity to discuss tests and deliver diagnoses in a sensitive,
    thoughtful compassionate way. Women are reporting that these rushed interactions
    feel coercive.
  • – Puzzle piece number five. Medical schools don’t offer clinical
    training about people with intellectual disabilities.
  • – Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.

All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like
ours impose an unwanted cost on society. Somehow, without our knowledge or
participation, a cost-benefit analysis has been applied to our children and they
aren’t measuring up.

You may be wondering: How did we ever get to this point?

For the purposes of this conversation, let’s start back in the ‘50s. Most of you
won’t remember it, but people with disabilities then had not been granted the
right to go to public school. Doctors didn’t think that people with intellectual
disabilities were capable of learning, and routinely recommended that they be
sent away to institutions. During the ’50s in this country, an estimated half a
million children were institutionalized, often under the most abusive and
degrading conditions.

So when a French geneticist named Jerome Lejeune discovered
the extra 21st chromosome that causes Down syndrome in the late ’50s, his
discovery caused many to hope that treatments would soon be found. As you of
course know, that didn’t happen. A far more straightforward task, from a
scientific point of view, was the development of tests that could be used for
prenatal diagnostics. Those tests really took off after abortion was legalized
in 1973.

Doctors and scientists took a public role in recasting the definition of
healthy fetuses and legitimate abortions, and what were called “therapeutic”
abortions came to be regarded as a legitimate and desirable way to prevent or
eliminate Down syndrome. It was in some ways just an accident of history that
these so-called therapeutic abortions became well entrenched before our society
was able to see what individuals with Down syndrome, given a chance, could do.It
is, as author Michael Berube has written, a bitter paradox: even though we have
barely begun to explore the ways in which we could include people with
disabilities in our society, we are devoting precious time and resources to
developing better ways of spotting and eliminating these people before they are

Particularly troubling is the fact that this shift – to preventing Down
syndrome by attempting to prevent the births of children who have it – was
largely engineered by members of the healing professions, the very people who
are charged with the responsibility of protecting vulnerable populations.

So now we are left with a harsh reality indeed. The implicit message the American
College of Obstetricians & Gynecologists seems to be sending is this: even
though racial, cultural and ethnic diversity are valued and supported in our
society, genetic diversity is not. It seems that it’s more important to be
“normal” than to be “human.” Or maybe we should view this as less a
philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for
business to deliver only babies that the medical profession calls “good

Somehow, along the way, the professional organization representing
these doctors has failed to notice that they have embarked upon the elimination
of an entire class of people who have a history of oppression, discrimination
and exclusion.

I know we empathize with today’s young parents. Their finances are
limited. They have grown up in an era of fear, taught to be afraid of strangers
and wary of the strange. In the obstetrician’s office they trade their fears for
the illusion of control — but in the process they are giving away much of what
defines America at its best: a society that assumes responsibility for those who
are vulnerable, a society that accepts those who are different, a society marked
by generosity, liberty and freedom of thought.

These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem
unfriendly, whether we had “the test.” Or even why we didn’t have “the test.”
When medical professionals look at our beloved children and say “that shouldn’t
have happened.”

Let’s face it: people with Down syndrome have a catastrophic PR
problem. The doom and gloom talk has gone largely unchallenged for far too

It gives me great pain to tell you all this, because I know you love your
family members as much as my husband and my son and I love Margaret. I know,
too, that you share our vision that people with Down syndrome are valued,
contributing and vibrant members of our families and our communities.

We come together at reunions like these to affirm the value of our family members’
lives, secure in the knowledge that their extra chromosome is NOT the most
important thing about them. They belong; they dream big dreams; they contribute;
they deserve respect. What makes their lives difficult is not their genetic
makeup; it’s the uninformed attitudes of others.

We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.

Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:

  • –Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.
  • –Building relationships with hospitals, and talking with
    families who have a fresh diagnosis.
  • – Monitoring their local news media, and
    holding them accountable for their coverage and their use of language about
    people with disabilities.

These are great steps, but let’s not stop there. Let’s dream even bigger.

It’s time for us to insist that our organizations advocate
forcefully on behalf of people with Down syndrome in ways that are targeted to
reach decision-makers, to reach medical professionals, and of course to reach
the general public. Here are some of the things we need to do.

1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They
need to hear the nuanced, compassionate message that is at the core of diversity
and human rights: all people have value and dignity and are worthy of
celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the

2. We need to put out lots and lots of well-designed materials that will
teach doctors how to discuss prenatal screening and diagnoses with their
patients. Senators Kennedy and Brownback have recently reintroduced their bill
on this topic. Whether it’s this bill or another one, we need to find a way for
doctors to get the materials they need.

3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.

4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the
heart of any pregnant woman. We must change this.

5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.

6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all.
Imagine how different things would be if people could be referred to a website
that allowed them to click on videos that would show them footage of people with
Down syndrome, of all ages and ability levels, going through their daily lives.
America’s teenagers are communicating actively through Youtube – why shouldn’t

7. We need to speak up to challenge the old stereotypes about our family
members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary
people sharing slightly extraordinary lives with people we love and who love

I talked earlier about people who sometimes ask us about whether we had “the
test.” Here’s what I think they really want to know. Did you, or would you,
choose this person to be in your family? Let me tell you my answer to that

When my husband and I decided to have children, we were kids. (Okay, we
were in our early 30s. But viewed from a distance, that sure looks young now!)
Sure, we had lots of education, degrees and experiences, but there was a lot we
didn’t know:

– We didn’t know what it meant to be a parent.

– We didn’t know that there was no such a thing as normal.

– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned– No child is “normal” - and neither are we;

– We, like all parents, need to get over the notion of our
children meeting some arbitrary standards of perfection that we couldn’t
possibly achieve ourselves; and

– We choose our children, and each other, over
and over, every day of our lives.

In short, my husband and I have been privileged to share our lives with someone who is a constant reminder 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 are not a good predictor of personal happiness or quality of life.

As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.

But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.

A couple of years ago, a newspaper running a piece I’d written asked for a family
photo, including Margaret. I gulped, feeling exposed, and called my husband to
ask his thoughts. He said, “Stand tall; run the picture.” We did.

That is my message to all of us: Stand tall; get out the message.People will listen.

We can do it.


Labels: dishin' on DS

Post a comment
Write a comment:

Related Searches