I was thrilled to be able to talk a little further with Stephanie Wincik about her book! You can find more information about the author at her website.
Can you talk a little about your professional experience and what prompted you to write the book?
I’ve worked as an RN in the field of developmental disabilities for about 27 years. Even though I work very closely with many individuals who have Down syndrome, I was unaware of the astoundingly high rate of abortion of babies with Down syndrome (around 90%) that was occurring in the United States and throughout the world. About a year ago I stumbled across this statistic “accidentally” while browsing through a book on autism. Initially I was sure it had to be an exaggeration, but after some research it turned out to be correct. After that, I felt compelled to write the book in an attempt to educate both medical professionals and expectant parents about the realities of raising a child with Down syndrome—the diagnosis and prognosis is not nearly as dire as it was even a few decades ago, but the notion that having a child with Down syndrome is a tragedy is still pervasive in our society.
How did the world change from viewing those with Down syndrome as divine in some cases to the more negative perceptions we see today?
I think that overall, the world today places a much higher value on physical perfection than perhaps was the case centuries ago. People with Down syndrome, although not as perpetually cheerful as they are often stereotyped to be, generally possess a great many positive inner qualities—compassion, tolerance, kindness, an ability to appreciate life’s small pleasures—that in today’s fast-paced society may not seem useful in our constant race to “get ahead.”
I was surprised to see that so many physicians encourage their patients to abort babies with Down syndrome. Is this the main reason such a great number are aborted, or does the problem rest more with parents who don't want an "imperfect" child?
Overwhelmingly, the main reason for the high rate of abortion appears to be lack of updated information about Down syndrome on the part of physicians, nurses, and genetic counselors. Time and again while writing this book, I spoke with parents of children with Down syndrome who related horror stories of the negative information they received from medical professionals when they discovered their child would have Down syndrome. Most parents felt pressured to abort after being told that their child would only be a “burden” both to themselves and to society as a whole. Very few parents reported receiving accurate, balanced information about raising a child with Down syndrome, and some parents who chose to abort later regretted their decision after meeting and talking with other parents of individuals with DS. Often parents choose to abort simply out of fear that they are not equipped to care for a child with DS, but many of their fears could be relieved if only they were presented with the correct information before making their choice.
You asked some thought-provoking questions about eugenics and where the practice of aborting children who have physical challenges (or even might develop problems) will stop. What trends do you see that could give us an indication of which direction society is headed (making these practices either more or less prevalent)?
I usually tend to think on the positive side, so I believe that despite our new-found ability to predict which children will be born with physical challenges and to abort them in favor of a more “perfect” offspring, cooler heads will prevail in the end. Certainly some parents will still insist on trying for so-called perfection, but with ongoing education about eugenics and the pitfalls that await if we continue on our current path, the trend toward routinely aborting these children will decline over time. Also, as people with Down syndrome continue to become more visible in their communities—attending college, holding jobs, volunteering, etc.—the stigma of the diagnosis will gradually begin to fade away, allowing more of these individuals a greater chance at life.
You talk about how inclusion of people with Down syndrome would be a big part of the solution to helping others understand their gifts. How do you recommend that readers put this into practice, and can you offer any additional solutions to the problems discussed in the book?
Education is the key to solving this problem. Medical professionals must be trained using updated information about the quality of life now enjoyed by people with Down syndrome, and in turn, prospective parents will receive accurate information about what to expect as they raise their child. Ongoing inclusion of people with Down syndrome and other challenges in all areas of society will eventually lead to the desensitization of the general public to “non-typical” people—in other words, when you work and play alongside someone long enough, over time the differences between you begin to appear less obvious. My suggestion for readers is to try to view individuals with Down syndrome as they view themselves—just regular people who strive to be accepted and to live normal, everyday lives.
How does the perception of children and adults with Down syndrome in America compare to that in the rest of the world?
Perception of individuals with Down syndrome varies widely throughout the world. Some countries are overall more accepting than America. For example, in Great Britain, physicians and other health professionals receive special training in caring for non-typical individuals as part of their medical education. On the other hand, Spain has a significantly higher percentage of Down syndrome abortions than nearly anywhere in the world—an estimated 95-97%.
What's next for your work with Down syndrome? Any other books coming up?
Right now I am focusing on getting copies of the book out to OB/Gyn offices, medical and nursing schools, and Down syndrome parent organizations in an effort to raise awareness and provide education on the termination issue. For my next book, I’ve been toying with the idea of a book on spirituality and Down syndrome. Although I have not yet done any formal research, anecdotal information seems to suggest that many people with Down syndrome appear to be more “tuned in” to the spiritual side of the universe than perhaps the rest of us are—an intriguing concept that I think is worth exploring further—we’ll see!
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Making a Case for Life: A New Definition of Perfection by Stephanie Wincik
Benny and Shrimp by Katarina Mazetti
So...to sum up...let's just say that God has humbled us--again and again--through this boot-camp experience we call seminary. There have been losses and frustrations and testing and tears and weariness...but also joy and peace and provision and love and friendships and learning.
We are different people than we were three years ago. Our priorities have shifted; our desires have, too. And, boy, have our politics ever changed! But God is still having to work on us...on perpetually pulling our focus away from ourselves, back to Him and then outwards to others.
And I imagine He'll keep doing that during the next five years that we plan to be here. Because we are so far from where we need to be.
So, that's it. Seminary: no official wrap-up. Just a mini-introspection as we do the next thing.
