Oct/Nov 2011
As executive director of the Global Down Syndrome Foundation (GDSF), Michelle Sie Whitten is dedicated to promoting research of a common birth defect that has touched her family. She recently sat down with ABILITY’s David Radcliff to discuss the aims of her foundation, and the role Down syndrome plays in both her work and home lives.
David Radcliff: How would you explain the work you do at the foundation?
Michelle Sie Whitten: We’re unique in our ability to fill a void of information about Down syndrome. Historically, there have been good parent-outreach organizations, but there hasn’t been a nonprofit that specifically treats research and medical care as core competencies. People with Down syndrome now live into their 60s, so there’s a significant need to revisit the research and medical care.
Radcliff: You got involved in this cause because it directly impacts someone in your family.
Whitten: That’s almost always the case, isn’t it?
My first child was born with Down syndrome in 2003. At 19 weeks into my pregnancy, I got the terrible prenatal diagnosis, and later I had the day-to-day experience of raising a child with intellectual and developmental challenges. I set out trying to find whatever information was available. I wanted to learn how I could give my daughter every opportunity.
Radcliff: How much did you know about Down syndrome before the diagnosis?
Whitten: Nothing. In fact, I had never met anyone who had a disability. Looking back, I wonder whether that was because people with disabilities had been segregated at the time, or because that was just a reality of where I went to school.
From a young age, I’ve been passionate about correcting discrimination and fighting inequality in areas of gender, sexual orientation and cultural bias. Having a child with Down syndrome, in a strange way, expanded my interest in human and civil rights to an even greater degree.
Radcliff: What would you hope to convey to other parents who have recently had a child with the condition?
Whitten: I think the first thing to realize is that nobody can tell you what your experience will be. And you won’t know, until you go through it, how you’ll feel or function as a parent. By and large, people with Down syndrome are much more alike than they are different. But there are differences, especially in the first few years of life, that do need to be addressed with therapy and proper medical care.
Radcliff: What are some of those early medical needs?
Whitten: Approximately 50 percent of kids with Down syndrome are born with a congenital heart problem. If your child falls into this category, you’ll want to make sure to get him or her properly examined. The good news is that 99 percent of these heart conditions can be successfully treated.
Parents should also check out their child’s hearing. Kids with Down syndrome can experience significant hearing loss or what’s called “blue ear,” so it’s recommended that these kids get their hearing tested frequently. A failure to pick up on a hearing problem in its early stages can affect the clarity of the child’s speech or even his or her ability to speak.
Radcliff: It could also inhibit socialization.
Whitten: Exactly. So those are two examples of medical needs that parents should know about, and there’s a whole list of topics available from the American Association of Pediatrics, and then a more detailed list offered by the Down Syndrome Medical Interest Research Group.
At the Linda Crnic Institute for Down Syndrome in Denver, we’re working on a wonderful toolkit of information that we’ll roll out to professionals. That way it won’t be completely incumbent on parents to figure out everything that is needed for a child.
People with Down syndrome are more like us than they are different, but they do have a unique set of challenges and a unique set of gifts. It is very important for a new parent to enjoy their baby, but also to address his or her medical issues. Though parents might feel overwhelmed, finding the right nurse or doctor can set a child on a trajectory towards successfully reaching his or her full potential.
Radcliff: As is true in the process of raising any child, there are all kinds of factors that might come into the picture that parents can’t foresee.
Whitten: Exactly. In the case of my daughter, for example, we were told by certain professionals that kids with Down syndrome don’t need speech therapy until they’re three years old. Then, when our daughter was about three, we discovered from another very reliable source, that you’re generally supposed to start a child with Down syndrome on speech therapy at 18 months. We felt that we had lost out a little bit on our daughter’s time and trajectory.
Often parents of children with Down syndrome tell us of strange prescriptions a doctor or therapist has given them. We’ve been quite surprised and, in some cases, shocked. For instance, some parents are instructed to hold their baby or feed the child a certain way that can actually be harmful. Unfortunately, consistent, up-to-date information about how to care for a child, an adolescent or an adult with Down syndrome doesn’t exist. There were materials published in the ’80s, but we’re dealing with a different reality today. The research needs to be updated and disseminated both to professionals and to parents. Professionals are clearly not getting enough data.
Radcliff: Do you think this lack of education has to do with the notion that, for certain disabilities, the expectations are already diminished?
Whitten: I think some people, even from within the medical profession, feel a family that keeps a baby with a prenatal Down syndrome diagnosis should bear all the responsibilities associated with the condition. It’s as if they’re saying: “You made your bed. Now lie in it.” With accurate information and research, more can be done to improve the health, lifespan and even the cognitive functioning of people with Down syndrome.
Since the human- and civil-rights movements of the ’60s and ’70s, there has, thankfully, been a generational shift as people have grown up alongside our children and have come to see them as people with dignity who deserve rights and medical care.
Radcliff: It sounds like your primary objective is to get information out to families.
Whitten: We’re here for the professionals as much as for anybody. Without funding for research—whether it’s research done by the National Institutes of Health or the State Department of Education—it’s very difficult for us to disseminate accurate information. So we take every piece of information that we have on Down syndrome, and attempt to reach valid and evidence-based conclusions that we can distribute to society, the press, parents and professionals.
There are people who say 50 percent of our children will experience an early onset of Alzheimer’s disease in their thirties and forties. There are some who say 100 percent will experience this, and there are some who say less. What is the reality? Clearly research could demystify this. The Down syndrome community currently lacks patient registries, databases and biobanks that would aid in biological research.
The benefit of being last to the table in this regard, is that we can look at those facilities that already exist and adopt their best practices. We can really make sure we are protecting and empowering people with Down syndrome and their families. Not all registries, databases and biobanks do that. There are cases in which the science may eclipse the people being discussed, and we’d rather not have that.
Radcliff: What are some of the myths about Down syndrome?
Whitten: One of the most pervasive is that people who have Down syndrome can’t learn. You often hear, “Well, you know, she’ll never get beyond the mental ability of a five-year-old or an eight-year-old.”
Radcliff: That’s right in line with diminished expectations.
Whitten: Yes, it is. Sometimes the expectation is that this person shouldn’t even be given the right to live. Families who institutionalized their children were told, “Your kid is not going to be able to talk, read, walk or do any sports.” Clearly all of those things were false, and it’s hard not to shed a river of tears for those who are now gone. We can’t get them back. And they were so abused and so neglected during their life times. Even today, there’s a residue of that experience, as well as lingering uncertainty about what people with Down syndrome can actually accomplish.
When we held the first-ever national poll on the topic of how mainstream Americans view people with Down syndrome, we found the perception was overwhelmingly positive. I think that’s a result of Ted Kennedy and Tom Harkin, and all the people who really went to bat for the Individuals with Disability Education Act and the Americans with Disability Act. You see the fruits of their labor in our poll today. More than 80 percent of Americans strongly believe that people with Down syndrome have the right to live independently, get married and have jobs. In the 1960s, people would have said that people with Down syndrome should not be allowed in public places. So we’ve witnessed a huge paradigm change.
Radcliff: But I imagine there’s still plenty of work to be done.
Whitten: Absolutely. One of the questions in our poll was: “Should people with Down syndrome have the right to have children?” The results were interesting: People who knew people with Down syndrome said, “Yes, people with Down syndrome should have the same rights as the rest of us.” But many of those same people responded, “No” or “I don’t know” to the question of whether people with Down syndrome should be able to raise children. In contrast to this finding, respondents who didn’t know a person with Down syndrome responded: “Yeah, of course!” to the question about raising a child.
It’s troubling to me, as a parent of a child with Down syndrome, what something like that statistic suggests. If a person with Down syndrome isn’t capable of taking care of a child, how does that look to the broader community? Does that suggest this person is not capable, in general? How do we push the envelope in a safe way, as has been done over the last few decades, to a point where we can prove low expectations are, in fact, exceeded again and again and again?
The central issue is that we just don’t have the research. We’d love for the support behind Down syndrome to match that of autism and other intellectual and developmental disabilities. These groups have benefited from great studies about how their kids learn. In respect to Down syndrome research, the data is generally what is called “n of 1s,” meaning they’re drawn from a study of one person at a time. In these cases, the data shows, “Oh, Isabel can read,” and then, “Oh, Johnny can read at a first grade level.” It’s all these singular—
Radcliff: There’s no way to draw any kind of correlation or relationship?
Whitten: No. And it’s not being shown exactly why they’re able to learn. That’s the sort of information that could help create a toolkit for the teacher who, God bless him or her, is in the public schools and facing a poor teacher-student ratio. Over the next couple of decades, the 10 percent of students who require Individualized Education Programs (IEPs) will move closer to 15 percent. We need to help them. We need to have research. We need the research community and the medical community to see our kids with Down syndrome as equal to others and worthy of the investment. We need to take the results of that research and medical care, and feed it to parents and medical students and teachers. That would be good for everybody.
Radcliff: I want to go deeper into a subject that you brought up a little bit earlier: the “right to life” debate. I don’t want to get too political about it, but I don’t think that you and I can have this conversation and not bring up the topic.
Whitten: That’s a good point.
Radcliff: You are a parent who had to make a challenging decision, and I assume some people encouraged you towards one choice or the other. It seems that you’re very happy and comfortable with the decision you made.
Whitten: Republicans and Democrats alike have kids with Down syndrome. People who are pro-life or pro-choice have kids with Down syndrome. Our organization is like Switzerland—meaning neutral—in that respect. We don’t touch the issue. From a personal perspective, however, I’m not shy—and maybe I should be—about saying I’m pro-choice. I’ve always been pro-women’s health and pro-family health, but my own choice was to keep my daughter. Today it seems ridiculous to speak of the situation in those terms: My daughter is just my daughter, and she’s fabulous.
But, yes, there was a decision-making period that was challenging. I was catapulted into it when a blood test showed that I had a one-in-nine chance of having a child with Down syndrome. When I went to see an amnio doctor, I was shocked because they didn’t offer me any genetic counseling, and they should have. In fact, I found there was an incredible bias towards termination.
At the doctor, I saw a homemade video that basically said, “There’s a chance your baby is going to terminate naturally in utero. There’s a chance your baby will die before the age of one. And there’s a chance your baby will die before the age of three.” Percentages were given for all of these possibilities. So this video gave me the impression there was a good chance that my child, who is eight years old today, was going to die before the age of three. And then a list of potential medical problems went flying across the screen.
When the video ended, the genetic counselor came in and said, “Please don’t cry. Roughly 80 percent to 90 percent of moms who find out their babies have Down syndrome choose to terminate. You can terminate, too.” She gave me a book of photography filled with pictures of people who chose to take photos with their fetuses as a way of feeling closure on termination. I could certainly understand having these photos taken if you’re the mother of a stillborn child. But at 18 weeks pregnant, I was like, Are you crazy? Are you sick? Just the idea of it!
When I went to get my amnio, I realized within two seconds that the voice on the video was my doctor’s voice. I had been watching a video that he had made! That video didn’t give me any information about Mile High Down Syndrome Association, our local outreach group. So clearly the message was—
Radcliff: Skewed.
Whitten: Yes. Later I read some research done by a man pursuing a master’s in public policy at the Kennedy School at Harvard. He did a wonderful survey that showed the majority of medical students and doctors surveyed felt ill-equipped to deliver a Down syndrome diagnosis, yet the majority of them also admitted confidentially and anonymously that they would advise patients to terminate the pregnancy.
Are these bad people? No, they’re just not being provided with the materials they need to give an informed prenatal and postnatal assessment.
Radcliff: If all they know is the range of potential problems of life with Down syndrome, it would be natural for them to offer biased advice.
Whitten: Right. I think it’s also natural for doctors and professionals to resist questions or pressure from parent groups. That’s why building the Linda Crnic Institute, which is the first academic home for this kind of study, is important. It’s a place where academicians, scientists and medical professionals can come together, in a professional and thoughtful way, to create information. This is important for professionals because it helps them feel safer and more confident that their information is accurate and unbiased.
Radcliff: The more examples that are propagated of someone with a disability living a happy, productive life, the more likely it is that other families can make choices that take into account the positives along with the potential problems.
Whitten: Absolutely. I don’t think any parents have ever made a snap decision to institutionalize their child. I think professionals had a profound influence on these parents’ choices—and their children’s fates. In the 1980s, people with intellectual and developmental disabilities—Down syndrome being a large part of that demographic—were institutionalized at a very young age. They were neglected and abused and forced to undergo sterilization. It was horrible.
During that same period, the medical community made a commitment not to give life-saving procedures to people with Down syndrome. So today I can introduce you to several beautiful people who are in their thirties and forties, who are going to die in the next few years, because they weren’t given a heart operation 30 or 40 years ago—a heart operation that cannot be performed now. These people are dropping off the face of the earth through no fault of their own.
Radcliff: Wow. It’s as if they have bombs inside of them.
Whitten: Yes. And it’s just horrible to know the reason they’re not going to live longer is because some person decided that they weren’t worthy of life-saving procedures. Some doctors had even categorized the act of giving milk to a baby as a life-saving procedure. This resulted in doctors starving babies with Down syndrome to death in hospitals. There are photos of nurses trying to knock down doors to feed these babies.
Radcliff: Unbelievable.
Whitten: In the 1980s, all of the state governors got together and signed legislation to prohibit denial of milk to our babies, because it had previously been deemed as a life-saving procedure. I’m sure this same horrible denial of life happened to people with other developmental disabilities, as well. We hope our work within the area of Down syndrome has an effect on this whole field, but we need to start to recapture what has been lost for people with Down syndrome over the last decade. Once we get into this as a human- and civil-rights issue, I think the end result will help everybody.
Radcliff: How much awareness of her disability does your daughter have today?
Whitten: None. It’s very interesting. My husband and I have decided we will answer those “Am I different? Why am I different? What is Down syndrome?” questions when our daughter chooses to ask—and she is absolutely capable of asking.
Obviously, as I’m running the Global Down Syndrome Foundation, you’ll often hear the term “Down syndrome” in my household. But we never talk about our kids in front of our kids, as a rule. If, for example, I want to share a story with a co-worker about my daughter, I always ask my daughter for permission. Most of the time she says “yes,” and sometimes she says “no.” But that’s the general philosophy in our household with any of our children.
My son, who is five, sometimes asks me questions like, “People with Down syndrome can’t speak, right?” And I’ll say, “Of course they can speak, honey. Why do you ask that?” So then we talk about what it means to speak. My son knows there is a difference between someone who has Down syndrome and someone who doesn’t, but he also knows it’s not a difference we talk about in terms of that person. My son’s best friend is South Asian. I’ve told my son, “You don’t talk about this kid as ‘the boy with dark skin,’ right? And you don’t talk about Mommy as ‘the Asian chick.’ ”
[laughter]
I’ve talked with a lot of older parents about how they address Down syndrome with their children. Some parents tell their kids about the condition right away. Some wait until their child is an adult. In several cases, the question has never been raised or answered.
Radcliff: When I’m walking down the street on my crutches, it’s usually the little kids who are the first to ask questions about my cerebral palsy. If they ask, I tell them what my condition is. But it’s usually their mothers who are quick to say, “Don’t ask that question.” The mothers immediately apologize to me, which only creates another level of discomfort that wouldn’t exist if the kids had been allowed to learn and explore.
Whitten: That’s what has been really powerful about our information gathering. I once co-taught a class at the University of Denver for three hours. Twenty-eight students in the class were getting their master’s degrees in education. They were all going to become teachers, but only two were going to become special-education teachers. And by the end of my three-hour lesson, I asked the class, “How many of you believe having a child with Down syndrome in a class benefits all of the other children in that class?” All of the students raised their hands. But then when I asked, “How many of you think the parent of the child sitting next to that child believes the same thing?” Nobody in the class raised their hands.
Radcliff: Wow.
Whitten: That’s a problem. And it suggests the people in my class were anointing themselves as saints and saviors. I think society has gone through an amazing change, and we do benefit from the fruits of the labor of the ’60s and ’70s, but we haven’t yet recaptured that sort of momentum. The story hasn’t been told and the right kind of information hasn’t been given to the professionals. It’s our job to ensure that happens.
Radcliff: Otherwise people are likely to get locked into their own modes of working with disabilities.
Whitten: Right. So we’re really hoping to influence how teachers perceive these students. If you think no one but you values a certain group of people, that suggests you may have a bit of a savior-saint complex.
Radcliff: It’s well-intentioned, however.
Whitten: It is.
Radcliff: What is the general response you get when you tell people about the work you do and why it’s important?
Whitten: The response varies depending on the community I’m addressing. If I’m talking to people in the Down syndrome community, or in the field of intellectual and developmental disabilities, they get it and it’s wonderful. So many collaborations have percolated on different fronts because of that sort of energy. If I’m talking to someone who is outside of that community, however, it depends. There are people who just are not comfortable with differences, and we may never convert them into people who are interested in our work. But that’s true for every kind of labor of love, whether or not it involves a medical condition.
Radcliff: Or in respect to any minority group, in any sense. There will always be outliers who are indifferent to catching up.
Whitten: Or they don’t care or they don’t have the bandwidth or it’s not a priority to them. We are only given one life to live and time is short, so finding what you’re passionate about is so important. People who want better lives for people with Down syndrome, people who want better lives for people with intellectual and developmental disabilities, and people who believe in human and civil rights for everybody are really our sweet spot. If you have any of those interests, then how can you not be interested in and supportive of our work?
Radcliff: If your aim is to engage empathetic people, I’d like to believe that’s a large target audience.
Whitten: Absolutely. At our organization, rather than frame the issue as one of “disabilities,” we use the descriptor “differently abled.” We think that’s a nicer way to describe people. Eventually we’ll launch this wonderful website with a section about words and language. There’s been a big movement within the Down syndrome community to use “people-first” language, and I understand it, even though, grammatically, it’s a little odd.
Radcliff: It’s sometimes a challenge to write that way. We use people-first language in the magazine.
Whitten: I understand the reason for it. There’s a whole generation of people who still say “Down babies,” “Down kids” and “Down families.” I just think it’s always important to consider the source. If there’s an article about Down syndrome in the newspaper, for example, and it’s fabulous, it’s great, it’s positive, it’s everything you want, that editor might still receive an outpouring of mail from angry people beating up that newspaper for not using people-first language.
Radcliff: And that misses the point.
Whitten: Yes. Consider the source. Is the overall effect of the piece a positive one? Use these moments as opportunities to educate, not to beat somebody up. If you make a choice to berate that person and that organization, you might lose their support forever. This is a society in which there is free speech, and there are plenty of opportunities to educate. It took me two years before I got accustomed to using people-first language, and we’re going to give a newspaper report two seconds?
Radcliff: I used to refer to myself as “disabled” all the time. It didn’t even occur to me what that suggested, until it was explained. Now I get it, and see the value in the person-first language.
Whitten: I had that same sort of ah-ha moment in a business class in graduate school. The teacher was lecturing about a business manager and eventually used the pronoun “she.” I realized that I had been envisioning a man in my head, the whole time. That’s when I was first ignited to the power of language, which is so amazing.
Radcliff: How has your relationship with your daughter, paired with the work you’ve done for the Down syndrome community, influenced your worldview?
Whitten: I’m the fourth of five children in an immigrant family: Dad’s from China, and Mom’s from Italy. There was always a heavy emphasis on education and achievement in my family, and I’m kind of a type-A personality. But today I’m much more concerned about my daughter and my son finding their way and being happy, than I am with a score on a piece of paper.
Now, it could be that having any child would have propelled me to make his or her happiness and health my priority. But I think the fact that my daughter is challenged in certain intellectual pursuits has made me a better mom than I otherwise would have been. I think I might have been more aggressive about academics with my children, if it had not been for my daughter’s challenges.
I’ve always had a lot of patience with kids, and I’m a much more patient person, in general, when interacting both with kids and adults who have Down syndrome. But I remain impatient in my desire for things to be better and more fair. On the home front, I feel my experiences make me a better wife to my husband, as well.
My daughter has opened my eyes to a whole group of people that, to many of us, almost don’t exist. I had thought I was a worldly, educated person with a broad field of friends and colleagues. But there’s this huge population—arguably the largest minority in the United States—that had for so long been invisible to me. Raising my daughter has made me a much better person. She’s ignited my life and opened my eyes.
Photos by Nancy Villere – CrushPhotoStudios.com
