Sunday, April 14, 2013

Brilliant Souls

Amidst all the doom, gloom, and ongoing stress surrounding the new prenatal testing and its negative implications for people with Down syndrome, I thought it might be nice to do an uplifting post for a change. Over the past few years I've had the opportunity to speak with many individuals with Down syndrome and their families. In doing so, not only have I made some wonderful new friends, but I've observed something else rather incredible that prompted me recently to complete a second edition of my book, Making a Case for Life. The updated version, Brilliant Souls, contains a new chapter exploring the amazing connection that many people with Down syndrome appear to have with the spiritual world. What follows is an excerpt from the chapter about Chloe Kondrich, a delightful young lady from Pittsburgh, Pennsylvania who, even at the tender age of nine, has already made remarkable strides as an advocate for all people with different abilities:

In addition to her unusually loving and caring personality, over the years Kurt and his wife have noticed something else remarkable about Chloe—she seems to have a special connection to the spiritual world, and regularly reports talking to people who have passed, often describing them with astonishing accuracy. Long before Chloe’s birth, Kurt became acquainted with the Scuillo family when he was assigned to patrol their Pittsburgh neighborhood as part of his duties as a police officer. Years later, the Scuillo’s son, Paul, would follow in Kurt’s footsteps and become a police officer himself. In the spring of 2009, tragedy struck the family when Paul and two other officers were killed by a heavily armed suspect after responding to a call about a domestic disturbance.

Today, Kurt remains close with the Scuillo family and still visits Paul’s parents regularly, often taking Chloe with him. Whenever Chloe arrives at their home, Paul’s mother, Sue, notices that “she always goes straight to Paul’s picture.” Even though Paul and Chloe had never met prior to his death, Sue believes that the two frequently communicate. “Chloe tells me that she talks to Paul in her room, and sometimes she sees him in her mirror.” Any doubts Sue may have had about whether Chloe’s conversations with her son were indeed real, vanished completely during a recent visit by Chloe and Kurt. “When Chloe mentioned to me one day that Paul is with baby David, I just started to cry,” Sue says. She went on to explain that she and her husband, Max, had lost a baby to miscarriage 44 years ago—something Chloe had no way of knowing as the couple had never revealed their loss to anyone.

Sue finds great comfort in knowing that her two sons are together. Although she was convinced early on that Paul was still watching over her and her family even after passing from his physical body, Chloe’s affirmation of his continuing presence in her life has been a priceless blessing for Sue. Like others who have been touched by Chloe’s uncanny ability to reach out to others just when they need it most, Sue believes that Chloe possesses a special gift. “I know Paul is still here,” she says, “and when Chloe visits she can tell.”

Chloe’s heightened ability to connect with the spiritual world is a phenomenon that has been observed frequently in both children and adults with Down syndrome. Next, we will explore this phenomenon and its possible implications for the future of our human family.

Sunday, November 6, 2011

Eliminating Diversity: Whose Lives Are More Valuable?

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?

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:

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.

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.

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?