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Stand Tall

Note: for a more complete list of my posts, please visit my new site at www.patriciaebauer.com --

Please also see my related post "Tell them it's not so bad" at: http://www.patriciaebauer.com/2007/10/02/tell-them-its-not-so-bad

Text of my keynote speech about routine prenatal screening

delivered at the 35th annual convention

of the National Down Syndrome Congress

Kansas City, Missouri

Sunday, August 5, 2007

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 misguided.

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 prenatally.

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 testing and screening. 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 born.

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 outcomes.”

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 long.

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 volume.

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 we?

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 us.

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 question.

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.

Together.

'Life is far from ordinary for these kids'

[I've moved! For a more complete listing of my posts, please see
my new website at: www.patriciaebauer.com. -- pb]

Teens talk candidly about growing up with a sibling who has special needs.

Twenty teenagers and young adults in the Minneapolis area have teamed up to produce a book about growing up in households with a sibling with special needs. “”Who Asked Me: A Journal of Discovery and Sharing By and For Siblings of People with Developmental Disabilities” is an attempt to present their lives honestly, from their own point of view. Among the topics covered are admiration for their siblings, impatience with people who use the word “retard,” embarrassment, and worries about adult responsibilities.

Mostly … the siblings wrote about love, complicated though it may be. The teens … agreed that their lives have been enriched, not cheated, by having these siblings.

One lovely example: “My brother,” wrote Tess Hayes, 14, whose older brother Brett has Ring 22 syndrome, “is an inspiration not only to me, but to every individual that has the amazing chance to meet him. I just hope that I, too, might one day live life as fully as my brother does, for that is truly a gift.”

The book is available here. Tips on strengthening sibling relationships are here.

From the Minneapolis Star-Tribune.

'Heroic teen fought for life to the end'

Detroit News columnist Laura Berman contributes a thoughtful, sensitive portrait of Miles Levin, a funny forgetful teenager whose cancer diagnosis spurred him to develop into a conscientious student and a writer with an international following. By the time of his death this week, Miles’ messages of life and hope on a hospital blog had enlisted regular readers from around the world.

His passion for life was matched only by his insistence that it be a good life, a meaningful one. What the world most needs, he said in his last days, is “more kindness.”

… He tried to think of cancer as a gift. “I am living more richly than I ever was before cancer, so if I die, will it have been worth it just to get these years of superliving?” he asked at one point.

Miles’ website at William Beaumont hospital is here. Registration required.

'Some parents say special education is too easy on students'

‘Parents say schools game system, let kids graduate without skills’

Writing in the Wall Street Journal, John Hechinger and Daniel Golden give weight to parent arguments that special education students are being passed through without mastering academic material. Hechinger and Golden track lawsuits claiming that special education programs are undermining academic standards by giving students with disabilities a free ride. The resulting story, the latest in a continuing series by the Journal, assumes the newspaper’s usual skeptical view of the value of special education programs.

In attempting to document the collision of the nation’s special education programs with academic standards and graduation requirements, the reporters find conflicting regulations, poor communication, and lots of hard feelings among teachers, administrators, regulators and parents.

The story is worth your time, although readers should be warned that the conflict it describes is a fundamental and thorny one that has been developing since the Individuals with Disabilities Education Act was passed more than 30 years ago. It defies easy solutions.

Sadly, scant attention is given here to the role that could be played by the effective use of each student’s federally-mandated Individualized Education Plan (IEP). IEPs should be designed to challenge each individual student and should be used as the standard against which to measure student achievement.

Instead, underlying the story seems to be the impossible expectation that children with disabilities should be performing at the same academic level as their peers without disabilities, a goal which the reporters say is the result of the 2001 No Child Left Behind Act. That law requires that children with disabilities take the same tests as do other students.

There is plenty of blame to go around here. An attorney reports that school districts are passing special education students to avoide being blamed for not providing the right services if students faile. Teachers say they have tried to fail students who didn’t make an effort or skipped class, only to have administrators insist on passing grades. Parents report that students received standard diplomas without being able to demonstrate adequate language or math skills.

It appears that a fundamental, and neglected, aspect of the dispute may center around the terminology used in grades and diplomas. Many states require all students to earn the same kind of diploma, creating anxieties in families where students are not performing at typical levels on tests. Policies on grading are similarly divided.

One wonders whether a separate grading structure for students with IEPs would allow teachers to more accurately measure student progress against their IEP rather than against standards that have been developed for students without disabiities. Such grades, with a notation indicating an adapted curriculum, would give a more accurate view of student work as well as providing motivation for achievement, but would not provide inflated transcripts for college applications or feed unreasonable parental expectations.

From the Wall Street Journal. Registration required. See also the Journal’s listing of all its stories on what it calls “mainstreaming” and others refer to as “full inclusion.”

Not all my sons

Arthur Miller’s missing act

From Vanity Fair, a powerful and well-written article that examines the tragedy of one father’s refusal to accept his son’s disability. Upon his death two years ago, playwright Arthur Miller was extolled as America’s moral compass, a champion of personal responsibility. Yet Miller’s personal life was at odds with his literary reputation. When his son Daniel was born with Down syndrome in the 1960s, Miller sent him to an institution, cut him out of his life and never acknowledged him publicly. Friends said the playwright never visited with his son until the years preceding Miller’s death.

Contributing editor Suzanna Andrews attempts to understand Miller’s actions and explain them within the context of the day. At the time of Daniel’s birth, it was common for doctors to recommend that children with Down syndrome be institutionalized, although many parents were disregarding such advice.

Andrews tracks down Daniel Miller and describes the hellish conditions in the institutions in which he grew up, where children were warehoused without supervision and tied to chairs if they misbehaved. She describes Daniel as an engaging and personable man who has a job, a huge network of friends, and a passion for disability advocacy work, despite the fact that he did not receive a formal education. Upon the death of his father Daniel was granted a quarter of his father’s estate. Still, he never enjoyed a father-son relationship with the man who authored “All My Sons” and “Death of a Salesman.”

It would be easy to judge Arthur Miller harshly, and some do. For them, he was a hypocrite, a weak and narcissistic man who used the press and the power of his celebrity to perpetuate a cruel lie. But Miller’s behavior also raises more complicated questions about the relationship between his life and his art. A writer, used to being in control of narratives, Miller excised a central character who didn’t fit the plot of his life as he wanted it to be. Whether he was motivated by shame, selfishness, or fear—or, more likely, all three—Miller’s failure to tackle the truth created a hole in the heart of his story. What that cost him as a writer is hard to say now, but he never wrote anything approaching greatness after Daniel’s birth. One wonders if, in his relationship with Daniel, Miller was sitting on his greatest unwritten play.

Today, Daniel Miller lives with the elderly couple who have long taken care of him, in a sprawling addition to their home that was built especially for him. He continues to receive daily visits from a state social worker, whom he’s known for years. Although his father left him enough money to provide for everything he needs, Daniel has kept his job, which he loves and “is very proud of,” according to Rebecca, [Miller Day-Lewis, his sister] who visits him with her family on holidays and during the summers. “Danny is very much part of our family,” she said, and “leads a very active, happy life, surrounded by people who love him.”

Some wonder why Arthur Miller, with all his wealth, waited until death to share it with his son. Had he done so sooner, Daniel could have afforded private care and a good education. But those who know Daniel say that this is not how he would feel. “He doesn’t have a bitter bone in his body,” says [disability rights advocate] Bowen. The important part of the story, she says, is that Danny transcended his father’s failures: “He’s made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn’t see how extraordinary his son is.” It was a loss that Arthur Miller may have understood better than he let on. “A character,” he wrote in Timebends, “is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse.”

I'm moving ....

... to www.patriciaebauer.com

Please visit me in my new space!

Travel plans

I'm off in Kansas City to deliver a keynote address at the annual convention of the National Down Syndrome Congress. Back Monday.

Real jobs for real people

The Wall Street Journal runs an extended feature on an employment program at Walgreen’s for people with disabilities.

The headline: “Erasing ‘Un’ from “Unemployable’: Walgreen program trains the disabled to take on regular wage-paying jobs”

Highlighted is 18-year-old Harrison Mullinax, who has autism.

“Mr. Mullinax works eight hours a day at a new Walgreen Co. distribution center, where he wields a bar-code scanner, checking in boxes of merchandise bound for the company’s drugstores. From his paycheck, he tithes to his church and sometimes treats his mother to dinner at Kenny’s, a local buffet restaurant. ‘It answered a prayer,’ says Mr. Mullinax’s mother….”

The distribution center employs 264 people, more than 40 percent of whom have various disabilities, and is 20 percent more efficient than the company’s older facilities.

“… an innovative program at the distribution center [in Anderson, S.C.] is offering jobs to people with mental and physical disabilities of a nature that has frequently deemed them ‘unemployable,’ while saving Walgreen money through automation.”

” … executives at Walgreen and the social-services agencies working with it believe the company’s program has a larger number of disabled employees, doing more-sophisticated work, than is typically available to people with mental and physical challenges. “

Paid registration required to view WSJ story.

Reaction to "Where's Molly?"

Blogger Kay Olson, who describes herself as a “thirtysomething disabled feminist,” reacts to “Where’s Molly?” in a guest essay on the CNN site. She says the widespread acceptance of institutionalization in years past is a tragedy that continues to stigmatize people with developmental disabilities today.

” … we’re still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they’re dangerous, completely incompetent and lack any ability to contribute to society. And those beliefs are not true.”

The tragedy is exacerbated, she says, by the fact that abortion was legalized before people with disabilities were able to be fully integrated into the community. As a result, she says,

“… fear and stigma are a bigger part of [reproductive] choice than they might otherwise be if acceptance and providing community resources and integration were a bigger part of our social history instead.”

Molly and Jeff Daly

From a new documentary featured on CNN:

In 1957, when Jeff Daly was 6 years old, his 2-year-old sister suddenly disappeared from his family.

For nearly 50 years, Jeff and his family lived their lives as if his sister had never existed.

One day, after both his parents had died, Jeff found the answer to the question he wasn't supposed to ask

Following records his father had kept, Jeff Daly learned that his parents had sent Molly to a state institution for the "feeble-minded" in Oregon shortly before her third birthday. He searched for her, built a new life that includes her, and then lobbied for a change in Oregon law that now makes it easier for families to locate people who had been institutionalized.

Now Daly has made a documentary film that explores his family's journey. "Where's Molly?" opens a window on the practice that led to the institutionalization of an estimated half a million children with disabilities in the '50s alone. More on the film can be found here and here.

CNN explores the history and significance of institutionalization in the 1950s and 60s, and traces the legacy of stigma and shame that is still felt today.

A new perspective on prenatal screening

Writing in Canada’s professional journal of obstetrics, representatives of the Canadian Down Syndrome Society raise strong questions about the ethical implications of recent recommendations that all pregnant women be offered prenatal screening for Down syndrome.

“Our vision is of a proud Canada where all are welcome, where diversity is embraced, and where everyone’s genes are valued equally.”

CDSS vice-chair Rhonda Grant and executive director Krista Flint define Down syndrome as “a naturally occurring chromosomal arrangement that has always been part of the human condition.”

They maintain that social constructs and belief systems have aligned to cause perceptions that DS is a birth defect or an illness, a perception they say is flawed. They draw parallels between Down syndrome screening and prenatal sex selection, saying both practices are rooted in cultural biases that cause inequitable treatment and reduced quality of life for the targeted group.

Among their recommendations:

• Professional education for physicians and health care providers about the reality of lives lived with Down syndrome.


• A broad-based effort to provide accurate and balanced information to pregnant women, both about DS specifically and also about the realities of life with a disability.


• The use of value-neutral language by doctors in discussing Down syndrome with patients.


• A comprehensive plan to put prospective parents in contact with support groups or other knowledgeable parties.

Grant and Flint note that two members of the organization’s 11-member board have Down syndrome, as do twelve members of a board advisory committee. They describe the advisory board members as “university students, entrepreneurs, artists, employees and spouses who share our concerns about the new recommendations from the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the implications of those recommendations for them and other people with disabilities.”

The letter is published in the July issue of the Journal of Obstetrics and Gynaecology Canada (JOGC), Canada’s peer-reviewed journal of obstetrics, gynecology, and women’s health.