Life Worthy of Life: Down Syndrome, Equality, and My Son Silas

 
 

Those of us blessed by the love of someone with an extra twenty-first chromosome look forward to October. October invites me, along with all other parents of children with Down Syndrome, to proclaim loudly that our children live lives worthy of life.

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October is National Down Syndrome Awareness month. This annual month of awareness, sponsored by the National Down Syndrome Society, celebrates the beautiful diversity of life and the abilities of all people. It is a month to be reminded of the self-evident truth that all human beings “are created equal, that they are endowed by their Creator with certain unalienable Rights.” Among these rights, it should be remembered, is the right to life itself.

Unfortunately, many deny these truths. Abortion rates increase considerably whenever prenatal testing reveals that a child has Down Syndrome. New non-invasive prenatal testing techniques increase the likelihood of a prenatal diagnosis. The trend of denying life to those who are different is so significant that Down Syndrome may soon be completely eradicated.

Politically, much ado has been made of Donald Trump’s public mockery of a disabled reporter. Such cruel and childish behavior brings to mind a playground bully’s insults wounding the weak. Trump’s mocking words and gestures rightly deserve condemnation. Less has been made, however, of Hillary Clinton’s resolute opposition to protection of the right to life itself for those with Down Syndrome. Donald Trump’s words wound the disabled. Hillary Clinton’s policies kill.

As October draws to a close and November 8 approaches, it is worth contemplating the self-evident truth that individuals with Down Syndrome are “created equal.” If this is true, why are abortion rates higher when a child is diagnosed with Down Syndrome? Why are some contemplating a world without Down Syndrome?

Disorder, Disability, and Discrimination

Down Syndrome (trisomy 21, translocation, and mosaicism) refers to an immutable genetic characteristic in individuals having a full or partial copy of the twenty-first chromosome. Down Syndrome is a common genetic condition occurring in one in every 691 individuals born in the United States.

Down Syndrome is often clinically described as a “genetic disorder.” It is considered to be a disability. “Disorder” and “disability” are terms that blur vision and distort good judgment. These terms possess power (backed by the authority of science and medicine). They have the potential to obscure the truth that all are created equal. These terms unleash discrimination.

Discrimination against individuals with Down Syndrome has a long history. Many succumb to the temptation to assign relative value to individuals based on their perceived ability to contribute (economically) to society. This instrumental view of human beings focuses on perceived social costs of disability. Life with a disability is thought of as expensive, burdensome, and painful. Rarely when thinking of disorders or disabilities does one think of joy, courage, hope, or love.

Accordingly, parents receiving a Down Syndrome diagnosis for their child are often frightened. New parents feel ill-equipped to deal with a “disabled” child with a genetic “disorder.” Blind to the joys of life with Down Syndrome, some parents are even tempted to wonder whether disabled life is “worth it.” Some doctors even directly advise parents to consider alternatives to raising a disabled child. “You don’t need to be a hero,” one doctor recently advised after delivering a diagnosis of Down Syndrome. Just leave the child behind and let it die, he suggested.

In his book Another Season: A Coach’s Story of Raising an Exceptional Son, Gene Stallings, former coach of the University of Alabama football team, provides a similar account. While Coach Stallings was busy celebrating the birth of his first son, a doctor in a Tuscaloosa hospital informed him that his newborn son was “a mongoloid.” Following the protocol of their day (which reflected cultural biases regarding individuals with Down Syndrome), the doctor encouraged Coach Stallings and his wife not to take their son home. Together with hospital staff, the doctor encouraged the Stallings family to place John Mark in an institution. This would remove John Mark from his siblings and his parents. It would also ensure that he would be hidden from those living a “normal” life. Thankfully, the Stallings family rejected this advice.

My Son Silas

Like John Mark Stallings, my son Silas was diagnosed with Down Syndrome after his birth. Earlier in the pregnancy, my wife was encouraged to obtain invasive prenatal genetic testing. In a meeting with a “genetic counselor,” my wife asked whether the suggested tests were necessary to promote Silas’s health. The answer was no. Instead, the young genetic counselor advised, testing would provide my wife with information she might need to make “important decisions” about our child’s very existence. In other words, information she should use to choose to abort Silas’s life. It is odd, looking back, that this meeting occurred during the month of October.

A few months later, just hours after Silas’s birth, a registered nurse attending to Silas in the “well” nursery advised me that she believed Silas had Down Syndrome. Without giving me an opportunity to ask a single question, the nurse recited a litany of health problems I should expect in my son’s life (including higher than normal likelihood of leukemia, probability of heart defects, kidney failure, and more). She did not congratulate me on the birth of my son.

Her words frightened me, yet Silas has not had any of the health problems she listed. Looking back, I wonder why she mentioned none of the joys of life I should expect with my son. I wonder why she was unable to celebrate this new life.

Parents of children with Down Syndrome know well the stares revealing pity and the words revealing low expectations. Many believe that genetic disorders destroy meaningful lives. Many assume that children with Down Syndrome will never be able to “contribute” to society.

Where does such thinking come from? What motivates an entire culture to conclude that certain children are not entitled to life in their parents’ home—or any life at all? Why are so many children diagnosed with Down Syndrome aborted? What leads a doctor to tell a mother of a child with Down Syndrome to leave her child behind to die? What leads a nurse to ignore the beauty of a newborn child?

The answer to these questions lies in the dehumanizing philosophy that has come to dominate our culture.

The Spirit of Eugenics Lives On

Modernity added scientific precision to discrimination against the disabled. In 1883, Sir Francis Galton coined the term “eugenics” to describe a field of science aimed at “improvement of the human breed.” Galton’s essays on eugenics gave birth to the American Eugenics Movement. Building on Darwin’s insights, Galton and others sought to ensure that only the fittest survive in the human gene pool.

Individuals with defects, disorders, or disabilities were considered a threat to human improvement. According to eugenic thought, such individuals must be removed from the gene pool to improve the quality of human breeding. Thus, proponents of eugenics advocated the forced sterilization of individuals with disabilities. Institutions created to aid the disabled instead became places to store them in order to prevent them from participating in “normal” society. Eugenic thought was promoted in town squares and at county fairs, taught in public schools, and enacted into law by many state legislatures.

Eugenic laws reached the United States Supreme Court in 1927. In Buck v. Bell, the Court reviewed a Virginia statute permitting forced sterilization of individuals with mental disability. Virginia adopted the statute “for the protection of the health of the state.” Applying eugenic thought, Virginia determined that individuals with poor mental capacities ought to be weeded out of the gene pool.

The plaintiff in the case, Carrie Buck, filed a lawsuit challenging an order compelling a doctor to remove her fallopian tubes. The sterilization order was made on the basis of a Virginia mental health institution warden’s determination that Carrie Buck was “feeble-minded” and not fit to reproduce. The warden made this determination on little evidence other than the fact that Carrie Buck’s mother was also considered “feeble minded,” and that Carrie Buck had just delivered an “illegitimate feeble minded child.”

The United States Supreme Court, by a vote of eight to one, upheld Virginia’s statutory scheme. In the words of Justice Oliver Wendell Holmes, Jr., “Three generations of imbeciles are enough.” Carrie Buck, like 70,000 others, was sterilized in the name of progress and social utility.

In November 1921, just a few years before Buck v. Bell was argued before the Supreme Court, Margaret Sanger founded the American Birth Control League. Sanger was a close ally of the American Eugenics Movement. In 1932, Sanger published a paper in the Birth Control Review titled “My Plan for Peace” (which was based on an earlier speech). In it, she argued that a “Population Congress” ought to be established. This “Parliament of Population” would be comprised of eugenicists, social scientists, and other experts having power to control reproduction and immigration by force of law. Sanger argued that the first step this group should take should be “to control the intake and outputs of morons, mental defectives, and epileptics.” Sanger proposed forced sterilization, severe immigration controls, and tight restrictions on those she considered “feeble-minded.” Sanger argued that eliminating the disabled from the population would “insure the country against future burdens for maintenance” of the “feeble-minded.”

This eugenic thought was carried to its logical conclusion in Europe. In Germany, eugenic science sought to identify Lebensunwertes Leben (“life unworthy of life”). This phrase reveals the philosophic core of eugenics. The focal point is that certain lives are “disordered” and “disabled” such that the very existence of such individuals cripples the state. In order to overcome bad human breeding, certain genetic traits must be classified as unwanted. Someone must exercise judgment regarding what constitutes a “worthy” life. Someone must determine who should be allowed to exist. This is the fatal and deceptive error of eugenics. Shrouded in the clothes of mere descriptive science, eugenicists imported their own value judgments regarding which lives ought to exist. What is a life worthy of life? This question cannot be answered scientifically.

In the United States, eugenic laws led to sterilization and institutionalization. In Europe, eugenic laws led to termination. All such laws rest on the same logic: certain lives are “unworthy” of life in the political community. The logical connection between these laws is the reason why the defendants at Nuremberg cited the law of the United States (particularly Buck v. Bell) in defense of their own conduct.

World War II exposed the horrors of applied eugenics. The liberation of concentration camps compelled recognition of the dangers of this ideology. In response, the framers of the Universal Declaration of Human Rights rediscovered and declared anew a fundamental self-evident truth regarding human beings: all are created equal and entitled to certain inalienable rights.

Thankfully, the moral bankruptcy of eugenics is now widely acknowledged. Laws recognizing and protecting this intrinsic dignity of and worth of individuals have replaced eugenic codes. But the spirit of eugenics lives on. As long as mothers feel pressure to abort children diagnosed with a disability, eugenics remains alive. As long as some argue that handicapped infants are a “problem” to be resolved by allowing them to die, a threat to human dignity remains.

Life Worth Living

Earlier this month, our local Buddy Walk took place at John Mark Stallings Field at Faulkner University. The field is a special place for families celebrating the achievements of loved ones with Down Syndrome. A beautiful bronze statue of Coach Stallings holding his son’s hand greets all guests. At the Buddy Walk, children with Down Syndrome love holding John Mark’s hand. Some even give him a hug. Every time I witness families gathering together around these statues to celebrate life, I wonder what life would be like had John Mark not lived. In what way would the world be a “better” place if the disabled did not exist?

My son Silas was selected by our local Down Syndrome outreach group to lead this fall’s Buddy Walk as its ambassador. Si’s ambassadorial duties included running up and down John Mark Stallings Field, dancing in the end zone, jumping in the inflatable houses, laughing, dispensing hugs, giving high fives, and leading several hundred guests around the field. As I watched him interact with the “able”-bodied college student volunteers, I was reminded (and they were too) of why life is worth living.

Silas has a gift. He can put a smile on any face on any given day. I am privileged to witness him exceed expectations, inspire, give hope, encourage, and fill hearts with joy each and every day. My life would be very different had I never known his love.

Those of us blessed by the love of someone with an extra twenty-first chromosome look forward to October. It provides us with an opportunity to push beyond clinical diagnoses. Our message is simple: individuals with Down Syndrome enrich life. October invites me, along with all other parents of children with Down Syndrome, to proclaim loudly that our children live lives worthy of life.

Robert L. McFarland is an associate professor and associate dean at Faulkner University’s Thomas Goode Jones School of Law.

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