Recently, a group of New Zealand parents who believe they are fortunate to have a child with Down syndrome petitioned the International Criminal Court to stop their country’s practice of targeting fetuses with Down syndrome for selective abortion. The basis of their argument is that people with Down syndrome share the same physical characteristics and are genetically linked by having the same additional chromosome. Therefore, individuals with Down syndrome can be classified as an identifiable group protected by the Rome Statute. The Rome Statute prohibits “persecution of an identifiable group of the civilian population through measures that prevent their birth.”
In our own country, a more accurate method of prenatal testing for Down syndrome is being developed and is expected to be released by the end of this year. The new test is creating a great deal of excitement among geneticists and physicians who see it as an opportunity to identify fetuses with Down syndrome much earlier, thus paving the way for quicker and easier pregnancy terminations for the nearly 90% of parents who choose this option. Sadly, the majority of medical professionals who are urging prospective parents of children with Down syndrome to abort their pregnancies are grossly misinformed about the reality of what life is actually like for these unique individuals and their families.
In a recent survey of individuals with Down syndrome and their families conducted by Children’s Hospital of Boston, 99% of people with Down syndrome report they are happy with their lives. Nearly 80% of parents felt that their outlook on life was more positive because of their child, and 94% of siblings reported feeling proud of their sibling with Down syndrome.
Contrary to popular perception, Down syndrome is not a disease. It is a genetic difference that has been part of the human gene pool since the beginning of time. As far back as 1500 B.C., a Central American culture created monuments of children with facial features resembling those of children with Down syndrome, and it is believed that these individuals were revered as partial deities. More recently, a medieval painting which now hangs in the Metropolitan Museum of Art in New York City, depicts several angels worshiping the baby Jesus, one of whom appears strikingly as an individual with Down syndrome.
Genetic diversity is essential for human survival. Given our limited understanding of how the natural world works, we cannot possibly predict with any level of accuracy the consequences of eliminating those whom we now view as “undesirable” human beings. Simply put, despite all of our technological advances, we still don’t know as much as we think we do, and our arrogance in attempting to wipe out an entire segment of the population just because we can could end up costing us dearly in the long run.
By systematically targeting and destroying individuals with Down syndrome, we are essentially declaring that only “normal” people—that is, those who look and think like everyone else—are worthy of birth. But should conformity with the norm be the only gauge by which we measure the value of a life? Or could we consider enthusiasm, kindness, tolerance, and good humor—traits observed with remarkable consistency in people with Down syndrome—to be equally valuable attributes?
Sunday, November 6, 2011
Saturday, May 1, 2010
Silent Eugenics, Again
A hideous story out of Italy this past week has once again brought to light the disturbing but nonetheless widely-held notion that disabled children have no intrinsic right to life. Kurt Kondrich, a tireless advocate for the rights of disabled children, has written a powerful response to the tragedy in Italy.
"A baby boy abandoned by doctors to die after a botched abortion was found alive nearly a day later. The mother, pregnant for the first time, had opted for an abortion after prenatal scans suggested that her baby was disabled."
(Ironically, as it turns out, the only "disability" the child was expected to have was a cleft lip and palate, both easily correctable conditions.)
You can read Kurt's full article at the link below:
http://www.renewamerica.com/article/100430
"A baby boy abandoned by doctors to die after a botched abortion was found alive nearly a day later. The mother, pregnant for the first time, had opted for an abortion after prenatal scans suggested that her baby was disabled."
(Ironically, as it turns out, the only "disability" the child was expected to have was a cleft lip and palate, both easily correctable conditions.)
You can read Kurt's full article at the link below:
http://www.renewamerica.com/article/100430
Sunday, April 25, 2010
Sunday, April 18, 2010
What Does "Pro-Life" Mean Anyway?
Over the past several decades, a great deal of political rhetoric has been focused on the often heated debate between those who identify themselves as “pro-life” versus those who embrace a “pro-choice” philosophy. But what does it really mean to be pro-life? Can one choose life in some circumstances but not others? Despite what many believe is a simple black-or-white, for-or-against issue, I for one struggle to decide which side I am on, or if I even need to choose a side.
As a nurse in the field of developmental disabilities, over the years I have cared for countless children and adults who were born “imperfect” by society’s standards. Until relatively recently, the typical advice for parents who produced a disabled child was to simply institutionalize the baby and “try again,” since the child was unlikely to survive longer than a few weeks or months anyway. Contrary to these dire predictions, however, many such children grew to adulthood despite their overwhelming physical and cognitive impairments.
I have often wondered, as a medical professional caring for these children, if perhaps we have done them a disservice by prolonging their lives. Particularly for those who are non-verbal, how can we know for sure that if given the choice, they would choose life for themselves? Or, if faced with the prospect of life in an institution, constantly undergoing painful medical procedures and hospitalizations designed simply to keep them alive, would they rather their parents had instead chosen abortion and thus spared them from a life filled with indignities? On the other hand, is it possible that these individuals are happy with their lives despite the hardships? Certainly many non-disabled people suffer serious, often prolonged, illnesses during their lifetime and still consider life well worth the trouble.
The answer, of course, is that nobody knows the answer, and this uncertainty is precisely why I find it impossible to take a firm position on either side of the abortion issue. However, if forced to make a choice, I would tend to opt for life in nearly all situations, and the reason is simple—nature has been in the business of selective abortion since the beginning of time, an advantage that trumps our meager experience as humans any day of the week. Children who are not meant to be born, won’t be—the naturally occurring process of miscarriage makes that decision for us.
If a child makes it into the world, then lacking any valid means to make a judgment call ourselves, I believe we must assume that he or she arrived here for a reason, even if our limited vision does not allow us to see it from where we currently sit.
As a nurse in the field of developmental disabilities, over the years I have cared for countless children and adults who were born “imperfect” by society’s standards. Until relatively recently, the typical advice for parents who produced a disabled child was to simply institutionalize the baby and “try again,” since the child was unlikely to survive longer than a few weeks or months anyway. Contrary to these dire predictions, however, many such children grew to adulthood despite their overwhelming physical and cognitive impairments.
I have often wondered, as a medical professional caring for these children, if perhaps we have done them a disservice by prolonging their lives. Particularly for those who are non-verbal, how can we know for sure that if given the choice, they would choose life for themselves? Or, if faced with the prospect of life in an institution, constantly undergoing painful medical procedures and hospitalizations designed simply to keep them alive, would they rather their parents had instead chosen abortion and thus spared them from a life filled with indignities? On the other hand, is it possible that these individuals are happy with their lives despite the hardships? Certainly many non-disabled people suffer serious, often prolonged, illnesses during their lifetime and still consider life well worth the trouble.
The answer, of course, is that nobody knows the answer, and this uncertainty is precisely why I find it impossible to take a firm position on either side of the abortion issue. However, if forced to make a choice, I would tend to opt for life in nearly all situations, and the reason is simple—nature has been in the business of selective abortion since the beginning of time, an advantage that trumps our meager experience as humans any day of the week. Children who are not meant to be born, won’t be—the naturally occurring process of miscarriage makes that decision for us.
If a child makes it into the world, then lacking any valid means to make a judgment call ourselves, I believe we must assume that he or she arrived here for a reason, even if our limited vision does not allow us to see it from where we currently sit.
Saturday, April 10, 2010
This past March 21 marked World Down Syndrome Day, an annual global event celebrating the contributions of a unique group of individuals who happened to arrive on earth with an extra chromosome. Unquestionably, people with Down syndrome make the world a better place. But if the current trend continues, fewer of us may have the opportunity to discover this for ourselves, because the Down syndrome population is being exterminated—an estimated 90% of babies expected to be born with Down syndrome are aborted.
So why is that a problem? Aren’t we really doing everyone a favor by sparing parents the heartache of producing a disabled child, as well as saving society the financial burden of supporting someone who may never even hold a job?
Ask Kurt and Margie Kondrich of Pittsburgh, whose daughter Chloe, 6, was born with Down syndrome. Chloe enjoys the life of a typical six-year-old—she attends first grade at her neighborhood school, argues with her brother, goes to birthday parties, and loves the beach. But when two of the children living next door to the Kondrichs were diagnosed with the same progressive, fatal disease, Chloe responded in a manner far beyond her years. “Chloe’s interactions with our five-year-old neighbor and his two-year-old brother are something that is not of this world,” her father says. “Her absolute unconditional love is a model for all of us…she rushes to this family who are in the darkest valley anyone could experience.”
In recent decades, life expectancy for people with Down syndrome has skyrocketed from nine years of age to roughly 60-65. But even as improved medical care is allowing people with Down syndrome to enjoy full, productive lives, 9 out of 10 Down syndrome pregnancies are terminated as a result of advanced prenatal testing methods.
Why? Because prospective parents often lack complete, accurate information about the quality of life now enjoyed by these individuals. Misconceptions about people with intellectual disabilities remain deeply ingrained in our society, particular the notion that being born with a disability is a tragedy. Contrary to this widely-held belief, studies indicate that the vast majority of families living with a person who has Down syndrome view the experience as a decidedly positive aspect of their lives.
Although a great many physicians believe that terminating fetuses with Down syndrome will result in the best outcome for all concerned, their advice is often based on outdated information or is simply the result of minimal experience and familiarity with disabled children and adults. It is this lack of personal experience, coupled with the scientific community’s giddiness over its ability to identify so-called disabilities in the womb, that has led to this silent eugenics movement.
Each year, an increasing number of individuals with Down syndrome are entering the workforce, paying taxes, and volunteering in their communities. Many are finding success as dancers, poets, actors, and filmmakers. But the most powerful impact made by persons with Down syndrome on those around them is achieved through the simple act of being themselves.
As our culture becomes ever more self-absorbed and materialistic, I believe we need more people with Down syndrome, not fewer. If we wish to reverse what appears to be a downward spiral for humanity, then tolerance, good humor, kindness, and compassion—qualities found with remarkable consistency in people with Down syndrome—are the very attributes we must hope all of the new human beings entering our world will possess. And I challenge anyone who meets Chloe Kondrich to support any argument suggesting that the world would be a better place if she had never been born.
So why is that a problem? Aren’t we really doing everyone a favor by sparing parents the heartache of producing a disabled child, as well as saving society the financial burden of supporting someone who may never even hold a job?
Ask Kurt and Margie Kondrich of Pittsburgh, whose daughter Chloe, 6, was born with Down syndrome. Chloe enjoys the life of a typical six-year-old—she attends first grade at her neighborhood school, argues with her brother, goes to birthday parties, and loves the beach. But when two of the children living next door to the Kondrichs were diagnosed with the same progressive, fatal disease, Chloe responded in a manner far beyond her years. “Chloe’s interactions with our five-year-old neighbor and his two-year-old brother are something that is not of this world,” her father says. “Her absolute unconditional love is a model for all of us…she rushes to this family who are in the darkest valley anyone could experience.”
In recent decades, life expectancy for people with Down syndrome has skyrocketed from nine years of age to roughly 60-65. But even as improved medical care is allowing people with Down syndrome to enjoy full, productive lives, 9 out of 10 Down syndrome pregnancies are terminated as a result of advanced prenatal testing methods.
Why? Because prospective parents often lack complete, accurate information about the quality of life now enjoyed by these individuals. Misconceptions about people with intellectual disabilities remain deeply ingrained in our society, particular the notion that being born with a disability is a tragedy. Contrary to this widely-held belief, studies indicate that the vast majority of families living with a person who has Down syndrome view the experience as a decidedly positive aspect of their lives.
Although a great many physicians believe that terminating fetuses with Down syndrome will result in the best outcome for all concerned, their advice is often based on outdated information or is simply the result of minimal experience and familiarity with disabled children and adults. It is this lack of personal experience, coupled with the scientific community’s giddiness over its ability to identify so-called disabilities in the womb, that has led to this silent eugenics movement.
Each year, an increasing number of individuals with Down syndrome are entering the workforce, paying taxes, and volunteering in their communities. Many are finding success as dancers, poets, actors, and filmmakers. But the most powerful impact made by persons with Down syndrome on those around them is achieved through the simple act of being themselves.
As our culture becomes ever more self-absorbed and materialistic, I believe we need more people with Down syndrome, not fewer. If we wish to reverse what appears to be a downward spiral for humanity, then tolerance, good humor, kindness, and compassion—qualities found with remarkable consistency in people with Down syndrome—are the very attributes we must hope all of the new human beings entering our world will possess. And I challenge anyone who meets Chloe Kondrich to support any argument suggesting that the world would be a better place if she had never been born.
Sunday, August 30, 2009
The World Needs Down Syndrome
Many may strongly disagree with the title of this post, but before anyone jumps to conclusions please allow me to explain a bit further. In the process of researching my upcoming book on Down syndrome, I have had the opportunity to speak to a number of families living with an individual diagnosed with DS. Perhaps surprisingly, family members of people with Down syndrome consistently describe their supposedly "disabled" child or sibling as being kind, friendly, honest, funny, and intensely concerned with the welfare of others. In my own contact with these individuals I have observed much of the same.
So why do most people believe that Down syndrome is something to be avoided at all costs? I believe the answer is twofold--first, most people don't really know anyone with Down syndrome. Second, throughout our lives we have been culturally conditioned to conform, fit in, be normal, be perfect. Therefore, our natural reaction to someone who appears different from the social norm is a feeling of discomfort, and it is that discomfort within ourselves that then manifests itself as pity for "that poor child." As a result, we come to believe that the solution is to prevent individuals who are different from entering the world in the first place, all the while assuring ourselves that "it's for the best."
The truth is, people with Down syndrome are not miserable. Certainly their lives are not perfect, nobody's is. For the most part, though, these individuals live in the moment. They delight in discovering and enjoying the best in themselves and others every day. Now tell me, why would we want to have fewer people like this in the world?
So why do most people believe that Down syndrome is something to be avoided at all costs? I believe the answer is twofold--first, most people don't really know anyone with Down syndrome. Second, throughout our lives we have been culturally conditioned to conform, fit in, be normal, be perfect. Therefore, our natural reaction to someone who appears different from the social norm is a feeling of discomfort, and it is that discomfort within ourselves that then manifests itself as pity for "that poor child." As a result, we come to believe that the solution is to prevent individuals who are different from entering the world in the first place, all the while assuring ourselves that "it's for the best."
The truth is, people with Down syndrome are not miserable. Certainly their lives are not perfect, nobody's is. For the most part, though, these individuals live in the moment. They delight in discovering and enjoying the best in themselves and others every day. Now tell me, why would we want to have fewer people like this in the world?
Tuesday, June 30, 2009
The Up Side of Down Syndrome
OK, so Down Syndrome really has nothing whatsoever to do with quantum physics, ghosts, or any of the other paranormal subjects I am prone to study and write about. Even so, I have begun writing a new book on the topic of Down Syndrome, for a couple of reasons.
First, I recently had the distinct pleasure of welcoming a delightful young lady with Down Syndrome into my home. She quickly became an integral part of our family and is a constant source of good humor, exuberance, and fun. My second reason for starting the book is a bit more serious. While skimming a recently published book on autism a few months ago, I stumbled upon this disturbing statistic: due to the wide availability of new and less invasive prenatal testing, 80-90% of all children with Down Syndrome are being aborted in the first trimester.
Initially I was sure the number had to be an exaggeration, but after further investigation I discovered the statistic was accurate. Largely due to outdated and inaccurate information about Down Syndrome, the majority of physicians are strongly recommending termination of these pregnancies, leaving many parents with what they feel is little choice in the matter. Most of what the general public knows about Down Syndrome is based on stereotypes, misinformation, and a lack of experience relating to individuals with intellectual disabilities. (By the way, the term "mental retardation" is being officially phased out as a medical diagnosis and is being replaced with "intellectual/developmental disability.")
The purpose of the book is to raise awareness of this alarming trend (with which we seem to be teetering dangerously close to the practice of eugenics,) and to dispel the common myths about Down Syndrome. Modern advances in health care are allowing most individuals with Down Syndrome to live longer, more productive lives than ever before. I hope to show that these individuals, once revered by some ancient cultures as being endowed with god-like qualities, are less of a burden on society than a good portion of our so-called "normal" population.
First, I recently had the distinct pleasure of welcoming a delightful young lady with Down Syndrome into my home. She quickly became an integral part of our family and is a constant source of good humor, exuberance, and fun. My second reason for starting the book is a bit more serious. While skimming a recently published book on autism a few months ago, I stumbled upon this disturbing statistic: due to the wide availability of new and less invasive prenatal testing, 80-90% of all children with Down Syndrome are being aborted in the first trimester.
Initially I was sure the number had to be an exaggeration, but after further investigation I discovered the statistic was accurate. Largely due to outdated and inaccurate information about Down Syndrome, the majority of physicians are strongly recommending termination of these pregnancies, leaving many parents with what they feel is little choice in the matter. Most of what the general public knows about Down Syndrome is based on stereotypes, misinformation, and a lack of experience relating to individuals with intellectual disabilities. (By the way, the term "mental retardation" is being officially phased out as a medical diagnosis and is being replaced with "intellectual/developmental disability.")
The purpose of the book is to raise awareness of this alarming trend (with which we seem to be teetering dangerously close to the practice of eugenics,) and to dispel the common myths about Down Syndrome. Modern advances in health care are allowing most individuals with Down Syndrome to live longer, more productive lives than ever before. I hope to show that these individuals, once revered by some ancient cultures as being endowed with god-like qualities, are less of a burden on society than a good portion of our so-called "normal" population.
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