Tag Archives: subtle discrimination of the developmentally disabled

Busting the Myths on Down Syndrome

This column was published on Ohio.com on May 6, 2017. One column only scratches the surface on the topic of life with Down syndrome in the United States in 2017. For more articles, videos and profiles of adults with Down syndrome, please refer to my public Facebook page, “Whoopsie Piggle,” or my blog of the same name on WordPress.

 

 

Two women walk into two separate pediatric medical genetics offices. Both are told by genetics counselors that they are carrying fetuses with Down syndrome and not to expect their children to function beyond the abilities of a 6-year-old child. Ever.

When and where did this happen? The United States in the 1950s? A former Soviet bloc country in the present day?

No. This happened in 2017 at University Hospitals and the Cleveland Clinic. No joke.

Every September since our daughter Lyra was born, I’ve spoken to first-year medical students at Case Western Reserve University. Too early into their medical educations to know what medical specialty they will ultimately practice, these students are the ideal audience.

Why? Because health care professionals in all specialties need to hear this: People with Down syndrome are fully human and today lead lives little different than the students themselves.

One day those students may be the gatekeepers for who receives care, or who even exists. Therefore, unlike far too many of today’s health care professionals, they need to give information based not on assumptions or on outdated and false stereotypes, but on facts. After all, medicine is a science, and science is founded on the pursuit of facts.

So let’s go over some facts:

• Most people with Down syndrome (DS) are born with a mild to moderate intellectual disability, according to the National Down Syndrome Society, which is to say most will function at levels considerably higher than that of a 6-year-old.

• People with Down syndrome have been found in clinical studies to have significant adaptive skills, allowing them to function at levels higher than expected based upon IQ alone.

• Increasingly, children with Down syndrome go to school, graduate from high school and go on to post-secondary education, including college. Many will drive, get jobs, live independently and marry.

In a study in which people with Down syndrome over age 12 were asked to weigh in, “nearly 99 percent of people with DS indicated that they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they look. Nearly 99 percent of people with DS expressed love for their families, and 97 percent liked their brothers and sisters. While 86 percent of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations.”

And what of the families? More facts:

• The incidence of divorce is lower in families with a child who has Down syndrome than in families who have children with other disabilities and, get this, families whose children are all nondisabled, according to the American Association on Intellectual and Developmental Disabilities.

• In a study of older siblings of a person with Down syndrome, 94 percent expressed feelings of pride for their sibling with DS, and 88 percent cited that they are better people for having a sibling with DS. I venture it’d be hard to replicate those numbers among families with just typical children.

The “Down syndrome advantage” is a phrase that has been coined in light of these and many similar studies. And from my own nonscientific research, confessions of a grandchild with DS being their grandparents’ favorite is so common, it’s almost unanimous.

Yes, challenges exist for parents raising a child with Down syndrome. About half of babies born with DS have congenital heart defects, though most are corrected completely with surgery. Also, most children with DS are born with low muscle tone, which not only results in delayed gross motor skills (sitting up, crawling, walking) and fine motor skills (eating with utensils, self-dressing, writing), it also impacts speech. Our daughter Lyra has been in speech therapy most of her life and may well continue throughout her life.

But there has never been a better time to be born with Down syndrome, at least in most parts of the United States and many other countries, though not all.

So why do so many medical providers persist in sharing horridly inaccurate opinions, as opposed to the facts, as shown in scientific research, when delivering a diagnosis of Down syndrome? I believe this is mostly a generational issue. I cannot recall meeting or hearing of a health care professional under age 40 who is negatively biased towards people with DS.

In fact, among women receiving a prenatal diagnosis of Down syndrome, the number who choose to terminate has decreased slightly in recent years, according to a study published in the journal Prenatal Diagnosis. The presumption is that today’s young women, unlike my generation, grew up seeing people with DS on television, as well as knowing people with DS in their schools and communities. Firsthand exposure to people with DS is the antidote to the biased notion that people in this population cannot function beyond the level of a 6-year-old.

The summer Lyra turned 2, we went to a family-friendly party in a sprawling yard. I had a fabulous conversation with a smart and funny woman my age. Nearby, Lyra was hustling about in her newly perfected bear walk.

“She’s so cute, how she crawls on her hands and feet,” said the woman.

“Yeah, it takes them much longer to crawl and walk with Down syndrome.”

“Wait, your daughter has Down syndrome?”

“Oh, yes,” I said.

“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single and had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I … I didn’t do it.”

“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.

“But I see your daughter and,” she paused, “it makes me wonder.”

I gave her my card, but not surprisingly, I never heard from her. In less than two minutes, I watched a woman think she could not possibly have raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life might really have been like with a child who had Down syndrome. All the wonderful possibilities, along with manageable challenges, that her health care professionals neglected to tell her.

Contact Holly Christensen at whoopsiepiggle@gmail.com.

Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife.

After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound exam eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and that beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. Furthermore I believed, whether intuitively or superstitiously, I would lose the baby if I had an amnio. That’s because my grandma, who mothered me unlike anyone else, had four boys because her only daughter died at birth. Grandma had a negative blood type and the blood of her baby girl, her second child, was positive. At the birth of her first child, Grandma’s blood had created antibodies against his positive blood type, which remained in her body and later killed her daughter. Since the 1970s there has been a remedy for this. After each of my babies’ births, for I too have negative blood, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but only boys came. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” I saw a bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was bi-lateral cataracts. All of which left me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first days of Lyra’s life were filled with appointments: pediatricians, a geneticist, a genetics counselor, two ophthalmologists, and several lab technicians. I did not cry when Lyra’s diagnoses of Down syndrome and cataracts were explained to us, her father and I just pragmatically, if not numbly, proceeded with what we needed to do for our infant. On the weekend after Lyra’s birth, we finally stayed home. Our midwife came to check on us and during her visit my partner drolly mentioned that he had to change all the diapers while I just lazed about. After she left, I told him how embarrassed his stupid diaper joke had made me feel, how I could not believe after a week of traipsing from one specialist to another when I had just given birth that he would call me lazy, even in jest. Anger suffused with pain until hot tears rolled down my face when my rational brain stopped driving my mouth, “And I don’t even have a daughter who will want to do the things mothers and daughters do, like, like go shopping! And what about a wedding? And all those things, school, books, what will we have?”

Right then, just days after her birth, I did not know how having Down syndrome would affect Lyra and nobody could tell me because people with Down syndrome have a wide range of abilities. But only after my bubble of grief had popped open and spilled all over our bedroom could I look at the contents. First of all, what were all these sexist stereotypes I suddenly felt were taken from me? I don’t even like shopping. I’m what I call a “surgical shopper,” I’m in and out, zip-zap, going to the same stores where I know things fit my family. The idea of spending a day shopping makes me glaze over with catatonia. Why did I care about a wedding? I never thought about weddings when my four sons were born. That episode in our bedroom was the first of many installments in which I would question whether I felt a certain way or, later, if Lyra behaved a certain way because (unlike all my other children) she is a girl or because (unlike all my other children) she has Down syndrome. If Lyra had 46 chromosomes, would I have thought, shortly after her birth, about shopping and a wedding? I will never know.

What I do know is that with each newborn a family is reinvented and there is a period of adjustment for all its members. First, a couple becomes parents of an only child. If they carry on and have a second child, the family has an adult to child ratio of 1:1. Should they continue further and have three or more children, the parents are outnumbered and in a whole different league of parenting. Also, with each baby the sibling order is reconfigured. But as both our first girl and a child with multiple diagnoses, I questioned things with Lyra that I had not encountered with my previous newborns. How would having an extra chromosome affect her? How could we make sure any disadvantages or discrimination Lyra might face, as a woman with Down syndrome, not be compounded by the limitations of her vision? The truth is, we have no way of predicting the long-term significance of Down syndrome or bi-lateral cataracts on Lyra’s abilities. In some ways, that has been more unnerving than the diagnoses themselves, a sentiment echoed in one of the first books I read on Down syndrome in which a mother of an older child writes, “I wish I had worried less about who my daughter would become and enjoyed the baby she was.”

Our first two years with Lyra were as though I woke up to find myself unexpectedly enrolled in a graduate program on Down syndrome and, to a lesser degree, vision impairment. Lyra’s father and I have read (often not the same) many books, articles, and blogs on Down syndrome. We began attending different meetings of local support groups, as well as the annual conventions of the National Down Syndrome Congress, conventions that function much like academic conferences. But as a writer, I process life by writing. So, when Lyra was three months old, I began a blog about our entire family, with Lyra as the inevitable focus of most essays. There are now more than fifty of these essays and when I read back I see not just a record of Lyra’s first years, but also my own evolution in understanding Down syndrome.

In one of the first essays, I describe learning about Lyra’s diagnoses and, while we loved her immediately and perhaps with even more ferocity than with our other children, feeling unsettled about how her diagnoses, especially her Down syndrome, would manifest. Months later, I re-read that essay and cringed at two terms I had used, one of which I promptly removed. It was the word “healthy,” which I had used to describe what I had wanted my daughter, in fact all my children, to be. Webster’s defines healthy as “enjoying health and vigor,” with “ill” as the antonym. Webster’s also defines health as “the condition of being sound in body,” with the antonym of “illness.” It is true that anywhere from 40% to 60% of children born with Down syndrome also have heart disease, ranging from holes that close on their own to multiple, severe defects, and we have known far too many children Lyra’s age who have died in their third year of life due to heart conditions. But most children with Down syndrome who have heart disease do not die and instead their hearts are permanently repaired either naturally or surgically. Fortunately for us, the pediatric cardiologist who performed Lyra’s fetal echocardiogram was correct: Lyra’s heart is beautiful and beautiful is better than good. She had a post-natal echocardiogram that once again revealed a perfectly healthy heart.

The other term I cringed at, but left in that early essay, was “milder symptoms,” which I had used to describe what I wished for Lyra. “Milder symptoms” is a legacy of the terms “mildly retarded” and “severely retarded,” both of which were commonly used to discuss people with Down syndrome when I was growing up in the 1970s. Rather than remove the words “milder symptoms” I left them as an example, which I discuss in a separate essay, of how the language regarding Down syndrome has changed rapidly in my lifetime, paralleling all the other changes surrounding the housing, health care, education and integration of people with Down syndrome. In the past twenty years, the word “retarded” has been deemed derogatory in any context. The same needs to happen to the words milder/mildly and severe/severely, comparative words that are routinely assigned to the symptoms of illness including fever, pain, nausea, and rashes (just look to the previous paragraph for an example). They are also used to describe outbreaks such as the annual flu and epidemics of disease. But having a mild or severe case of an extra chromosome is akin to having a mild or severe case of pregnancy. You either do or you don’t; you either are or you aren’t. There is no degree of Down syndrome, just a wide range of abilities exhibited by people with three twenty-first chromosomes. And really, how is that any different than the wide range of abilities exhibited in the population with two twenty-first chromosomes, i.e., “typical” people?

Yes, my daughter has an extra twenty-first chromosome, which certainly has causal impact on who she is, but my daughter is not ill; she is one of the most robustly healthy children I know. At two-and-a-half years of age, Lyra had never needed antibiotics, never had an ear infection, though she had contracted a reasonable number of snotty-nosed colds. She eats, sleeps and energetically plays. When left to her own devices for even a minute, Lyra gets into cupboards, the dog water bowl and, her personal favorite, the bag of paper to be recycled. Just like any toddler. Furthermore, the Ohio government does not consider Down syndrome to be an illness. Since birth, Lyra has had six eye operations (three on each eye). She wears highly specialized contact lenses (charitably made by Bausch + Lomb who make no profit on her rare lenses) for aphakia, or eyes without natural lenses. Her natural lenses were removed when she was six weeks old to eliminate the cataracts and allow her brain to develop as a sighted person. She sees an ophthalmologist on a regular basis and presumably will do so for the entirety of her life. The Ohio Bureau of Children with Medical Handicaps (BCMH) has helped us with the costs related to Lyra’s vision, but they do not cover any expenses related to Lyra’s Down syndrome specifically because it is a condition that can be remediated with interventions. While I can argue that it is in the state’s best interest to insure that early interventions for children Down syndrome, including physical, occupational and speech therapies, occur regularly and with accredited providers, the state has categorized Down syndrome as a disability, not an illness. While they do provide modest, at-home interventions in the first three years of a child’s life, the state primarily uses the public school system to provide services to children with Down syndrome up to the age of twenty-two.

Re-reading what I wrote two years ago, I see the subtle belief I held that Down syndrome was in essence a form of illness, a false belief that is pervasively held. While undeniably used to withhold the status of full humanity to both men and women, the false application of illness has a particularly misogynistic history. Certainly as far back as the Victorian era, illness has been used to depict an idealized form of an adult female. The consumptive woman with luminously pale skin shown reclining, her limp body nearly lifeless, was a mainstay of fin de siècle art and literature. How better to deny full humanity to half of the population than to enlist its complicity to behave as wan and powerless beings in order to attract the other, dominate, half of the population? Nor did that misogynistic cultural norm disappear as each and every wave of feminism washed over society. Like racism, today misogyny is often hidden from open conversation and behavior, only to be expressed in subtler ways. Seeing Lyra’s full humanity requires overcoming not just perceived medical limitations, but deeply rooted social and cultural perceptions too.

If Lyra is not ill, what is she? In the past two generations, children with Down syndrome are experiencing previously unknown levels of intervention, education and rich social lives. This has resulted in an explosion of new statistics. One of the most dramatic is that life expectancy has increased in the past thirty years from 25 to 61 (and continues to rise). Meanwhile, life for people with Down syndrome is radically different than it was in the 1970s. Today, children with Down syndrome go to school, graduate, and some continue on to college or other post-secondary programs. Many adults with Down syndrome are successfully employed, an ever-increasing number are getting married and even, the most surprising to me, driving cars. Living independently as an adult with Down syndrome is now the norm, not the exception.

IMG_1954So are people with Down syndrome different from the rest of us with just 46 chromosomes? Yes, and no. What I have observed in my own child, who is two-and-a-half years old at this writing, is her development is delayed, but in consistent measure. Due to hypotonia, or low muscle tone, a hallmark condition of Down syndrome that is entirely unrelated to cognitive function, Lyra first sat up when she was ten months old. Her brothers all sat up at about six months. She also crawled, and later walked, when she was a year older than her brothers when they achieved these milestones. Hypotonia can also affect the muscles of the mouth. Not unlike trying to speak after being shot up with Novocain, so too can the speech of some people with Down syndrome be harder to understand. And because people commonly assume that poorly articulated speech signifies low cognitive function, it is important to us that Lyra work with a speech therapist, which she has done since she was three months old. An extroverted child who loves to talk, everyone in our family understands Lyra’s speech while other people understand most of what she says, which, again, is little different than most two-year-olds. As Lyra has acquired, one-by-one, the basic skills of living, my fears about my daughter’s abilities have, in equal measure, begun to dissipate. With time, I have come to see that she will get there—“there” being a fully autonomous person—at her own pace, but she will get there.

Yet no matter the successes of Lyra and others liker her, she lives in a society that overwhelmingly treats Down syndrome as an illness, which many people believe should be avoided at all costs. The pervasiveness of this false belief was driven home in the summer of 2014 when evolutionary biologist and ethicist Richard Dawkins tweeted his response to a mother who had asked him what he thought she should do if she discovered the baby she was carrying had Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later defended his tweet by saying to do so would avoid suffering, revealing his utter lack of knowledge about Down syndrome. Clearly Dawkins not only sees Down syndrome as an illness, but he holds the view that people who have an extra twenty-first chromosome are less than fully human. Exposing the tremendous amount of work that needs to be done to educate, well, basically the world. For if an eminent researcher like Richard Dawkins is unaware of the scientific evidence regarding Down syndrome, it troubles me to think what is required to disseminate these facts within the general population.

And, yet, Dawkins’ ignorant tweet was a gift. The response was thunderous and substantial and, as a result, the controversy that ensued reached people who previously knew little or nothing about Down syndrome. Op-ed pieces appeared in newspapers and bloggers wrote about “The Down Syndrome Advantage,” a phrase coined to describe not anecdotal stories, but the scientific evidence regarding Down syndrome, including the following facts:

  • The divorce rate in families with a child with Down syndrome is lower than in families with a child with other congenital abnormalities and in those with a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having siblings with Down syndrome.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • 96 percent of people surveyed with Down syndrome liked the way they looked.

Before I had Lyra, there were things I planned to do if I ever had a daughter. Unlike my own upbringing, which implicitly stressed marrying a financially successful man over all other considerations, I would urge my daughter to find a career path that brought her joy, a sense of fulfillment and financial security. That making a commitment to someone who is financially successful is fine so long as that person truly loves her and makes her happy. To never let someone tell her she could not do something she wanted to do because she is female. That true beauty is derived from respecting and nourishing our bodies, minds and spirits and not to let anything cripple any part of her beautiful being.

The realization I have come to since the early days after Lyra’s birth is that her diagnoses need not change how I have long planned to raise a daughter because there is little, if anything, that Lyra will not be able to do or have simply because she has an extra twenty-first chromosome. What needs to change is the pervasive and radically false notions about Down syndrome that prevent my daughter, and others with Down syndrome, from being treated as fully human.

A Few Words About Down Syndrome

lyrarword1Dear Young Mamas of Children with Down Syndrome:

As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for those of you in your twenties or thirties. But because more women are having babies in their twenties and thirties than in their forties, most children with Down syndrome are born to you younger mamas (even now as more women in their forties are having babies than ever before). This explains why I have so many Facebook friends who are ten, fifteen, twenty or more years younger than me. We are all mothers of little ones with Down syndrome.

You younger mamas inspire me. In the two years since my daughter Lyra was born, many of you have created non-profits with valiant missions: to educate medical professionals about Down syndrome, to support families who have children with Down syndrome, to reach out and help families with medically fragile children both with and without Down syndrome. But mostly you mamas ask questions of each other, using this tool of your generation, the Internet, to find support and guidance as we all navigate the stages and attendant issues of raising children with Down syndrome.

Your passion for your children reverberates in your posts and pictures. Any one of you would bare-knuckle your way up weather-worn peaks or ford valley rivers rushing with spring snow melts to find what your children need and implement what you’ve determined makes sense for them and your families. You also get mad, furious sometimes, when someone says something that seems, if not hurtful, then downright tone deaf. And, yet, time and again, you calmly respond to comments and questions that I know upset you. You give accurate information but, more importantly, you share your stories and the stories of your children. And in these exchanges, as much as it may sound like hyperbole, you are changing the world for our children.

I, as a mother of a child with Down syndrome, am guilty of saying the very things that so upset you and I offer you not an excuse, but an explanation. You are right, language is very important. I raised all of my children to know that there are police officers, fire fighters and mail carriers even though I did not grow up in an environment that was thoughtful about much of anything, let alone language. As a young woman, particularly after I finally enrolled in college at age 21, I recognized the subtle, yet potent, harm caused by sexist language and eschewed it from my own speech. In my twenties, I caught on quickly.  All people, regardless of gender, race, religious beliefs, sexual orientation, national origin or age, should be treated as the full human beings they are and given equal opportunities to participate in society. That they are not has motivated most, if not all, of my political activism for nearly 30 years. Yet a fool I may well be because until I was 46 and held my infant daughter, I had not considered language as it relates to Down syndrome. It had to be directly pointed out to me.

12096046_1018159554872799_1299163800322496535_nThe first or second time I met with our local support group, I recall stopping myself as I said to the coordinator “Down syndrome child.” I apologized and she graciously told me not to worry. People-first language, i.e. a person who has Down syndrome as opposed to a Down syndrome person, is so easy to understand. However, this took a few weeks for me to consistently remember and apply a simple turn of a phrase that identified my daughter as a person, not her condition. Lyra was probably three months old before I had habituated people-first language in my speech.

A few months after Lyra was born I wrote the essay, “Learning About Lyra,” describing how we learned of her diagnosis only after she was born. I reread my essay a few months ago and realized I had used the word “healthy” in opposition to a Down syndrome diagnosis. Lyra, thankfully, is one of the most robustly healthy babies I know. To confuse a diagnosis of Down syndrome with poor health is incorrect. But books and articles concerning pregnancy and childbirth still make that mistake. You young mamas recently rallied a national parenting magazine to remove language from an article that referred to expectant mothers “wishing for a healthy baby but maybe having one with Down syndrome.” Lyra taught me, simply by being the baby in our house, that the word “healthy” used in opposition to Down syndrome makes no sense, which is why I removed it from my essay.

But because the essays in Whoopsie Piggle are about our journey, I did not remove from that essay my covert wish in the first days of Lyra’s life that she test positive for mosaic Down syndrome because of the possibility of “milder symptoms.” It’s a simple phrase that most people wouldn’t notice, but one I would not use today because, again, it connotes illness. I might instead state that my desire for mosaic Downs was implanted by the hope that, in the wide range of abilities children with Down syndrome have, my child would have the highest level of abilities possible. Part of that was my very real grief at the diagnosis, a grief most parents go through only to discover the child they have is perfect because he or she is a real child who is as lovable and as frustrating as any other child.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded” and, as harsh as those words sound in our ears today, they were once widely used phrases, certainly as I was growing up and, notably, in much of my adulthood. Consider, for example, that until 1992, The Arc, one of the oldest American organizations supporting parents of children with Down syndrome as well as the children themselves, had the word “retarded” as part of its name. Their website has a thoughtful explanation of how their name changed over time and why it no longer includes the word “retarded.” Closer to home, it was just five years ago, in October of 2009, that the State of Ohio and all its counties were required to remove the word “mental retardation” from any governmental agency or board. Around the City of Akron, billboards went up stating that Summit County MRDD was becoming Summit County DD. That was just five years ago.

If you are 25 years old, five years is pretty much all of your adult life. But at nearly 50 years old, well, things that happened five years ago seem on par with things that happened last month, it’s all so recent. I cannot recall when I no longer thought it was acceptable to refer to a person with Down syndrome as “retarded,” and assume it was after my dad and stepmom began working in a group home in the 1980s. But it wasn’t until a few months after Lyra’s birth, while listening to a performance by comedian Rob Snow  at an event for new parents of children with Down syndrome, that I understood that the word “retarded” is an unacceptable pejorative in any sentence. Again, once pointed out, I absolutely agreed. However, as embarrassing as it is, I have since caught myself on two occasions saying “retarded,” once referring to a cash register where I work and the second time referring to myself when talking with, of all people, Lyra’s occupational therapist. When I did, I immediately slapped my hand over my mouth in horror as though I’d just burped up a vile part of myself. Please, understand, young mamas, rewiring brain pathways is a process, especially the older and more calcified the brain. Yes, I believe everyone needs to recognize the hurtfulness of this and other derogatory words and make every effort to change and all of us can do so—it’s just that some of us have to unlearn habits that younger folks thankfully never learned.

So back to those people who use inappropriate words to talk about Down syndrome or your child. If they are asking questions with earnest curiosity, please continue to listen to the heartfelt intentions over the deeply flawed words. For those of us over forty, few of us had positive opportunities to know people with Down syndrome when we were growing up. If we ask a sincere question with clumsy or even hurtful words, gently point out to us how other words are more precise and not hurtful.

Sometimes all you need to do is listen.

There is a woman who is very important in our lives. Just a year older than I am, she tells me Lyra was put in her life to teach her about Down syndrome. “There was this mongoloid boy in my neighborhood,” our friend said to me when Lyra was still an infant. She then paused and looked over at me uncomfortably, “that’s what we called him.” She had brought him up to tell me a story about finding him alone, at age three, sitting on the street curb, partially dressed. She had not thought of him in years, perhaps even decades. But when she spoke of him, the word she had always used for that boy popped out, as though attached by mortar. I did not have to tell her the the once commonplace word “mongoloid” was wrong both for people with Down syndrome and people from Central Asia. When she heard the word come out of her mouth, I did not have to say a word. In an instant our friend witnessed for herself that word’s impropriety and knew she would never abide anyone calling Lyra “a mongoloid girl.”

More recently this same woman told me, “When I was in college, I worked with these young women who were retarded, they didn’t have Down syndrome, but they were, you know,” and she paused, not knowing how else to describe the condition these women had, before awkwardly saying, “retarded.” She was in tears recalling how these women had been treated. I told her the women were what we now call developmentally disabled, and she said, “Oh! Okay, developmentally disabled.” Our friend does not tell me these stories in order for me to correct her language, she tells me because in knowing and loving Lyra, she sees how unfairly people were treated whom she knew decades ago. And that she bore witness to their treatment and did nothing about it is cringingly painful to her, even though her complacency was based upon her understanding at the time. She did not know what she knows now. Motivated by a compassionate curiosity to discuss Down syndrome using the only language she had known, our conversations have changed the words she uses just as knowing Lyra has changed her understanding of Down syndrome.

The hardest comment to respond to is, in my opinion, They are all so sweet, these children with Down syndrome. This monolithic categorization is a stereotype that denies the full range of human emotions, as well as the expression of those emotions, in people with Down syndrome. And while it is statistically true that higher percentages of people with Down syndrome claim being happier with their lives than the typical population, calling them “all so sweet” is simply a stereotype. What happens when someone does not behave in accordance with the stereotype they have been labelled by the dominant members of society? In January of 2013,  three sheriff’s deputies in Maryland brutally murdered 26-year-old Ethan Saylor over a movie ticket when he did not behave like a “sweet man with Down syndrome.” But now I am just preaching to the choir. You mamas know this story, and too many others like it. It is our shared fear that one day this and other widely held misconceptions of what it means to have Down syndrome will cause our children to suffer and possibly irrevocable harm.

NPR’s Ted Radio Hour had an installment on stereotypes in which the last two pieces, while both about racial stereotypes, could just as easily have been about Down syndrome stereotypes. Jamilla Lysicott compares complimenting a black person for being articulate to complementing an elderly person for being lucid. I can easily imagine a person with Down syndrome being “complimented” for being both articulate and lucid. Paul Bloom digs into the history, the science even, of stereotypes. We know, he says, not to ask a toddler for directions or an elderly person to help us move heavy furniture. Those are both stereotypes that are usefully accurate as they have been developed over the entire span of human existence. Not so with racial stereotypes, which are far more recent in human history (until a few thousand years ago, people stayed put with their own kind), and wildly inaccurate. The solution to breaking down harmful stereotypes? Not surprisingly, it’s meeting individuals from the group being stereotyped.

And that’s where we come in, mamas, and papas too, of children with Down syndrome, we all have a duty to educate those who do not understand Down syndrome, changing societal perceptions one-by-one. Look, if a world-renowned researcher like Richard Dawkins can be wildly ignorant of the facts of Down syndrome in this day and age, most of us “regular folks” deserve a pass for our ignorance and a hand up in becoming informed. Please take advantage of every opportunity to share what you know, even when queried with bumbling and outdated language. Continue to hear the intentions over the poorly-worded questions. A few short years ago, the person asking the poorly-worded questions could have been me. And, as hard as it might be to believe, in a few years that person may be you as our society continues to evolve past where we are now. Or, as my very well-read, open-hearted grandmother once told me when she was in her seventies, “The more I know, the more I realize I don’t know.”

Thank you, Mamas, I am continually grateful to walk on this journey with all of you.

Holly

What Suffering? The Down Syndrome Advantage

I see you and Max acting so bravely, but nobody asks for a child with Down syndrome.

I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I read of Richard Dawkins’ advice to an expectant mother. Dawkins is an Oxford professor of evolutionary biology and an ethicist, who is perhaps best known for his 2006 book, The God Delusion, written to contend with those who deny the existence of evolution. In August of 2014, Dawkins tweeted to a woman who had inquired what he thought she should do if the fetus she was carrying tested positive for Down syndrome:

“Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Dawkins’ tweet went viral (I think largely because of his use of the word “immoral”), which he later defended as the humane position to take in order to avoid suffering. His position reveals how much remains to be done to educate everyone who does not know someone with Down syndrome, which was underscored when the outrage at his tweet seemed more focused on Dawkins’ atheism than his stand on aborting all fetuses with Down syndrome.

I don’t find Dawkins’ atheism to be any more controversial than the multitude of religions practiced by humans worldwide. What bothered me is that this somewhat firebrand scientist, who is not afraid to challenge dominant thinking, simply accepted an unsubstantiated position widely held by most people, i.e. Down syndrome equals suffering, and uncritically endorsed exactly what happens in the majority of cases where a woman discovers the fetus she is carrying has Down syndrome—the termination of her pregnancy.

This disconnect is not a function of religion, compassion, or a lack thereof, but is rather the result of a stunning lack of facts.

Not Your Grandparents’ Down Syndrome
Before the 1980s most people, including me, did not grow up knowing anyone with Down syndrome. That is because, until the 1980s, the overwhelming majority of people with Down syndrome were institutionalized, often beginning at birth.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in 1964, a longitudinal study was conducted comparing a group of infants with Down syndrome who were institutionalized to a group who were raised at home. The study continued until the children were eight years old and found the children who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.” These studies were some of the the the earliest steps in re-thinking what it means to have Down syndrome and to reconsider the wholesale institutionalization of this population.

I was born in 1965 and never saw a single child with Down syndrome enrolled in any of the ten schools I attended, in four different states, from kindergarten through high school. Nor did I grow up seeing adults with Down syndrome working, as they commonly do today, in grocery stores, restaurants, offices or any other businesses that serve the public.

The first people I met with Down syndrome were adults in group homes where my parents worked. Overwhelmingly, these residents with Down syndrome had lived most of their lives in institutions, only moving into group homes when, in the 1980s, the institutions were dismantled by the U.S. government. As I explain in my essay, “Changing Expectations,” what I as a young woman mistook as the reality of life with Down syndrome was based upon meeting people who had spent their entire lives institutionalized. The consequences of life-long institutionalization, where social and emotional deprivation is the norm, is catastrophic for any human being, as shown in studies (and these) of typical children raised in Romanian orphanages in the 1980s and ’90s.

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Down syndrome. For children with Down syndrome most often meet, and regularly exceed, the goals set before them.

At the same time that children with Down syndrome were beginning to be raised at home and national organizations were advocating on their behalf, the therapeutic professions, including physical, occupational and speech, began working with infants and young children with Down syndrome. Four decades later, these professionals and others have continued to discover more and better ways to enhance the physical and linguistic skills of children with Down syndrome. In other words, when our now two-year-old daughter Lyra is 18, it is likely that she will be capable of more than what most 18-year-olds with Down syndrome are capable of today. That is because today we know much more about therapies and interventions for young children with Down syndrome than we did 18 years ago and this trend will only continue.

We live in exciting times for people with Down syndrome. There is every reason to expect a baby born today with Down syndrome to live a full and productive life, including mainstream schooling, college or other post-secondary training, independent living, careers, marriage and even (what surprised me the most) driving automobiles.

And this is where the disconnect of information exists. People who are not in the Down syndrome community, as well as many medical professionals who should know better, overwhelmingly still believe, perpetuate, and make decisions based upon grossly false assumptions about Down syndrome.

Put simply:

  • Historically, the abilities of people with Down syndrome were wrongly underestimated.
  • The end of institutionalization combined with appropriate medical and therapeutic interventions have radically increased the abilities, skills and life expectancy of people with Down syndrome.
  • In era when so much is possible that people with Down syndrome truly are more alike than different from the typical population, the Down syndrome population is being targeted, usually under the misguided assumption of minimizing suffering, for significant (and in the case of Denmark, complete) elimination.

The Down Syndrome Advantage

Lyra and Leif who play, and fight, like all siblings
Lyra and Leif who play, and fight, like all siblings

Dawkins’ tweets on Down syndrome and abortion was simply a personal statement of what is the dominant opinion in North America and Europe. Statistics show that most women who discover their fetus has Down syndrome elect to terminate the pregnancy, even in Ireland where abortion is illegal. A week after Dawkins’ tweets went viral, an op-ed piece appeared in the New York Times. In“The Truth About Down Syndrome,” authors Jamie Edgin and Fabian Fernandez cite several statistics from research on people with Down syndrome and their families, including some that I have presented in previous essays:

  • The divorce rate in families that have a child with Down syndrome was found to be lower than in families that have a child with other congenital abnormalities and lower than those that have a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having younger siblings with Down syndrome.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low IQ scores might suggest.

These and similar statistics are why the phrase “the Down syndrome advantage” has been coined. For it seems, when reviewing the now substantial body of scientific research on life for people with Down syndrome and their families, that rather than suffering, most of these people are experiencing a higher quality of life than all those poor folks who do not have Down syndrome or a family member with Down syndrome. Why, then, does the perception of suffering persist?

Latent Bias for the Developmentally Disabled

There has been plenty of research on the existence of latent racism, as Nicholas Kristoff reported in August of 2014, even people who “deplore racism…harbor unconscious attitudes that result in discriminatory policies and behaviors.” Similarly, the term “suffering,” when used in a discussion about developmental disabilities, seems to be code, perhaps subconsciously so, for latent discrimination against people with lower intelligence.

For example, bipolar disorder is a genetic condition and while schizophrenia may not be genetic, it is certainly a biological event and these two mental illnesses often afflict people of incredible intelligence and creativity, who can and regularly do suffer greatly, as do their families. And while those who have mental illness share with the developmentally disabled a long overdue need for greater support, compassion and medical research, I don’t detect a movement afoot to prenatally eliminate intelligent people with mental illnesses simply because they and their families will surely suffer.

An even better comparison might be cystic fibrosis, a genetic disease that until the 1950s killed most children with the condition by the age of five. In a time span mirroring the same decades in which medical progress has occurred in the treatment of children with Down syndrome, today babies born with cystic fibrosis can be expected to live well into their thirties or forties, or approximately half as many years as the average population. In their shorter lives, a person with cystic fibrosis can expect frequent medical appointments and, not uncommonly, emergency hospitals stays. That is to say that the majority of people with cystic fibrosis are more medically fragile than most people with Down syndrome. However, people with cystic fibrosis do not have delays or disabilities in cognition related to their condition. Do people with cystic fibrosis suffer? I leave it to them to say, but their lives are no less, and often are far more, medically compromised than the lives of people with Down syndrome. Are people with cystic fibrosis less valued members of society because of their shorter life spans? It seems not and, again, there is no push to eliminate prenatally people with cystic fibrosis no matter how much they and their families might suffer.

The standard all too often applied when considering a prenatal diagnosis of Down syndrome is the avoidance of presumed (and statistically unproven) suffering outweighing the value of a diverse population. This same standard is never applied when discussing the lives of people with average or above average IQs who have congenital or genetic conditions other than Down syndrome, even when those conditions lead to unquestionable and significant suffering.

Granted, today there are no prenatal tests available for many of these conditions, but that may likely change. And when it does, there should never be any movements to eliminate entire populations of people with mental illness or cystic fibrosis like there currently is to eliminate people with Down syndrome. Rather, as a society we should devote funding for research to find effective means of ameliorating the negative effects of of these and other conditions. Yet repeatedly I have heard from researchers who work on finding ways to improve the lives of people living with Down syndrome that funding for research on Down syndrome has been reduced in the past few years, being diverted instead to prenatal testing research.

Informed by Experience

While it is true that in Europe and North America the majority of fetuses that test positive for Down syndrome are aborted, the number of women choosing to keep their babies when receiving a positive test for Down syndrome has increased slightly in the past two decades. Researchers believe this is because “women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.”

To know someone who looks or lives differently than you is to discover their inherent humanity, evaporating any “otherness.” People with Down syndrome are indeed more alike than different, but they are also inspiring. Inspiring because of their accomplishments in a society that remains largely ignorant of what it means to have Down syndrome. Inspiring because, yes, a person with Down syndrome often has to work harder than his or her siblings and classmates to achieve the same things. But time and again, they go on to succeed, and even surpass, expectations.

Those of us in the Down syndrome community know the value of people with Down syndrome and many families have publicly invited Dawkins to meet their sons and daughters. Toward that end, I speak with other families each year to first-year medical students at Case Western Reserve University. We share our experiences of having a child with Down syndrome, while older children with Down syndrome speak directly with the students. I am always impressed by the level of engagement of these students, who seem to get it, that people with Down syndrome are fully human, long before listening to us. Last year, when I mentioned adoption agencies that specialize in the placement of children with Down syndrome, one of the professors interrupted me.

“I just want you all to know,” she said, “that there are far longer waiting lists to adopt children with Down syndrome than for typical children.”

Which is to say a significant number of people do, indeed, ask for a child with Down syndrome.

Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.

It’s those three babies.

Providence or Coincidence

It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.

I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.

“Oh, my, I think I’m gonna cry,” I said and promptly teared up.

“Oh, you really are!” said the customer.

“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”

Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.

“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.

Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.

Carrying On

Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.

Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.

It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?

What a Week

Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome

Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.

Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.

As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.

Uplifting Site

“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.

Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.

Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.

I went to Baby H’s Facebook page this week to lift my spirits.

Gratitude

When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.

Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.

Fully Human

Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.

I will do it. The mamas at my Facebook group are doing it. The folks and families at the Upside of Downs are doing it. Rob and Ellen Snow at Stand Up for Downs are doing it. The Down Syndrome Diagnosis Network is doing it. Numerous large national organizations, like the National Down Syndrome Congress and the National Down Syndrome Society, are doing it. Please join us in ending discrimination against the developmentally disabled. If I haven’t convinced you yet, stay tuned. I’m on a mission.

Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of soft bigotry, I want to follow up and dig a little deeper on the issue of discrimination against the developmentally disabled. Though it is illegal to discriminate against a person with a developmental disability, it is undeniable that discrimination still occurs, which should come as no surprise. Ask any person of color if the illegality of racial discrimination has provided him or her with a life of equal treatment.

Discriminating against a specified group of people is to deny that they are fully human. To have those who make important decisions—medical professionals, law enforcement officials, teachers, employers, politicians, to name a few—deem a population as lesser human inevitably results in unequal access to medical care, justice, education, jobs and protection under the law as provided to those groups who are considered fully human.

A friend reminded me this morning of the American civil rights heroine, Ruby Bridges:

Ruby Bridges, a brave little African-American girl, entered an all-white school on November 14, 1960.

As soon as Bridges entered the school, white parents pulled their own children out; teachers refused to teach while a black child was enrolled.

Only one person agreed to teach Ruby and that was Barbara Henry, from Boston, Massachusetts, and for over a year Mrs. Henry taught her alone, “as if she were teaching a whole class.”

Every morning, as Bridges walked to school, one woman would threaten to poison her; because of this, the U.S. Marshals dispatched by President Eisenhower, who were overseeing her safety, only allowed Ruby to eat food that she brought from home.

Another woman at the school put a black baby doll in a wooden coffin and protested with it outside the school, a sight that Bridges said “scared me more than the nasty things people screamed at us.”

Though it was over 50 years ago, the openly vicious hatred of a little girl simply for the color of her skin doesn’t seem so long ago (perhaps because I was born only five years later). Yet today, who would question that this was unmitigated racism or that clearly Ruby was not seen as an equal human being in the eyes of many of the white citizens of her town? And  while there are those who still believe that black children should not attend schools with white children, they are not likely to stand screaming about it on the curbside with casketed effigies of black children.

No, today discrimination is subtle, which, in some ways makes it more pernicious than what Ruby Bridges faced. For one thing, it’s harder to identify and easier for the perpetrators of discrimination to genuinely believe they are not biased against a particular group of people. Such is clearly the case with developmentally disabled Americans in need of an organ transplant. As pointed out in this article (published in 2004), in light of the Americans with Disabilities Act becoming law in 1990, developmentally disabled Americans have “moved from automatic exclusion to selective inclusion” in organ transplantation, often meeting many barriers along the way that organ transplant candidates without developmental disabilities do not face. The methods are so subtle as to be unrecognizable even by the perpetrators themselves:

There is certainly a sense…that these negative attitudes often have as much to do with not being as energetic in treating people with disabilities as it does with being actively resistant to treating them. People have been and are the victims of both benign neglect and active denial of treatment. Many respondents have been told that surgery or transplantation was just not offered to people with disabilities.

So why are some medical professionals less energetic in treating people with developmental disabilities? In many articles I have read, patients and their families report being told by their medical professionals that persons with developmental disabilities are not capable of following the intensive post-transplant care regiments or that they do not physically handle transplant surgery as well as the typical population, yet the very opposite is true.

Maybe it is obvious, but the question needs to be asked: Why are people with developmental disabilities discriminated against, which by definition means that significant (and often powerful) members of society do not see the developmentally disabled as fully human? Personally, I believe exaggerated value is placed upon one component of being fully human—cognitive ability. That people with greater levels of intelligence are considered more valuable to society and their lives worth saving more so than the lives of the developmentally disabled. Never mind that the range of cognitive abilities in people with Down syndrome is wide, never mind that any threshold of intelligence is never a predictor of a productive life. And by productive, I mean many things beyond economics, for while it is true that more and more adults with Down syndrome are entering the workforce, there is immeasurable value in how one person affects the lives of so many others.

Which brings me back to the three little ones who died in the past seven days. Their lives have touched countless people. Perhaps those of us who have had intense discussions about organ transplant policies this week will carry on the work of defeating the discrimination against those with developmental disabilities so that instead of “selective inclusion” there will be equal access to organ transplants. I sure hope so.

However, if discrimination were removed entirely from the scene, people with disabilities would still have a problem getting life saving transplants because there are not enough organs.

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