In recent months, people with Down syndrome and those who love and believe in them have shuddered at the advent of plans for expanded genetic prenatal testing. Given that the abortion rate for children with Down syndrome is estimated to be as high as 90 percent, such plans confront these children with a looming specter of social isolation—or worse, extermination.
A little-noticed study suggests that the process of isolation is already well underway. Writing in the Journal of the American Association on Intellectual and Developmental Disability, Wolfgang Lenhard and colleagues compared the attitudes of mothers of children with Down syndrome in 1970 to those of mothers today. While his analysis reveals a host of positive developments—parents today feel more supported, less withdrawn, and less tense than thirty-five years ago—the results also show a disturbing reality. Today’s mothers experience dramatically increased feelings of passive and involuntary segregation. And unlike their counterparts in 1970, a stunning 40 percent of them report being confronted with accusations that their child could have been “avoided.”
The conclusion is inescapable and stark: Although our policies over the past thirty years have become more supportive of people with Down syndrome, these children are increasingly seen as liabilities. We’ve become more generous with services, but more judgmental too. In this strange mix, what’s clear is that we still don’t believe that people with intellectual disabilities are valuable. When parents knowingly choose to have such a child, the message they frequently receive from the larger society is that they have chosen wrongly. Imagine knowing that others believe your child should not exist.
Year after year the debate rages about abortion and choice. But the time has come for a different debate—a debate about what exactly we are choosing.
Many people find the decision not to have a baby with Down syndrome completely understandable. After all, who would voluntarily choose a disability for their child or for themselves? If one’s decision about continuing a pregnancy is not about life but rather about quality of life, why not avoid the personal, familial, and financial cost of bringing a child with a disability into the world? Put that way, the answer seems obvious.
But the obvious can obscure the truth. Like other vulnerabilities we all live with, Down syndrome demands changes in our expectations. Such changes can be painful, physically, emotionally, and spiritually, yet none of us is exempt from making them. We all have our vulnerabilities. And the very process of accepting differences—both our own and those of others—is the path to strength. At our best, we celebrate differences not because they’re easy to deal with but because the hard process of coming to terms with them enriches our understanding of the power of the human spirit. To accept this is to assert, in the face of so much fearful evidence to the contrary, that we are each of infinite value.
To many people, it is surprising that some studies suggest that the majority of parents of children with Down syndrome report that having to deal with the disability has brought positive changes in their lives. These parents report high rates of happiness, family strength, and personal confidence. Common experiences include a new or increased sense of purpose in life, the acquisition of new skills, and an increased regard for spirituality. The disaster many people associate with the birth of a child who has a disability is not the complete picture. In fact, despite adversity, most family members cope, and find new meaning in their lives. They turn apparent loss into profound gain.
Those who live with and care for people with Down syndrome are able to do this because they know something that the technicians of genetic testing may need to learn: in giving to one another, we get back far more than we give. And in accepting unconditionally the full dignity of every human being, we often discover our own. In this way, the parents of children with Down syndrome embrace the always-unfulfilled aspiration of our nation’s founding—that we are all equal, capable, worthy of a chance, no matter what. But does our nation still believe that?
At this moment, the stakes are high. For make no mistake: we are in the midst of a silent resurgence of eugenics. The idea that each of us has equal human value regardless of background, wealth, religion, or disability—a cornerstone value of both our religious traditions and our political heritage—is at risk today.
I wonder who among our presidential candidates would join people with Down syndrome in advocating a belief in the universal dignity of human life, not in spite of vulnerability but because of it? Who will remind our friends and foes around the world that universal human dignity is still the cornerstone of U.S. power in the world, a cornerstone much stronger than our military, technological, or economic might? Do any of our leading politicians believe this?
In my role as chairman of the Special Olympics, I have been lucky to work with many talented and dedicated Americans—people such as Eddie Barbanell, an athlete, actor, and leader in the field of intellectual disability. Eddie often reminds me that we have to work harder to stop people from teasing and mocking those with Down syndrome. He should know, since he was born with it.
Perhaps Eddie’s real wish is that others who judge him to be of less value might begin by accepting themselves. And perhaps our shared wish would be that we all face our own limitations and find in them strengths we would not have found otherwise. The promise of equality and universal dignity is the radical challenge that inspired the founding of our nation and one that we dare not forget today. To take up that challenge is to understand that disability—whether mental or physical—is not an end but a beginning.
That belief is a choice. And it is a choice worth living for.