The Importance of Attitudes about Prenatal Testing

The Importance of Attitudes about Prenatal Testing
Excellent resources for medical professionals who share the results of positive prenatal tests for Down syndrome are available throughout the United States and around the world. However, there is significant lag time for journalists and television personalities who have much less preparation despite huge audiences.

There is understandable dissatisfaction about the tone, insensitivity and ignorance exposed in a 2013 Today Show story about one of the newest prenatal tests for Down syndrome. The segment featured a pregnant woman and her husband, who shared the results of a new 'non-invasive' blood during the interview. Because the test was negative, the news was celebrated. Not surprisingly, the couple and the interviewer were already aware of the results.

When an expectant couple is interviewed on television about the results of their negative prenatal test for Down syndrome, I would expect some sensitivity to be shown for individuals in the viewing audience who have Down syndrome themselves. I would hope that viewers who have a newborn baby with Down syndrome and those who have just been informed of a positive test result would be considered valued members of the television audience.

Even though the couple interviewed planned to continue the pregnancy no matter which result they heard, it was obvious that the "good news" that they were "safe" because their baby would not have Down syndrome reflected a deep level of fear and dread that was obviously assumed by everyone involved in presenting the story.

One supposes that interviewing a couple whose test had resulted in a prenatal diagnosis of Down syndrome would be either too tragic, too much an invasion of privacy during a vulnerable time; or too fraught with controversy due to disagreements about women's reproductive rights. The same might be true of including the parents of a newborn who had a prenatal diagnosis and are just getting to know their son or daughter in real life.

Parents of teens and adults are well aware that even the people closest to them can appear to be completely ignorant of the importance of language and attitude when discussing tender topics like prenatal testing. Families of babies and young children are likely to have learned early that most people are as ignorant as they had been before their child with Down syndrome was diagnosed. Surely the Today Show staff could have discussed those issues with any number of experts before this segment was scripted. Adults with Down syndrome should have been sitting at that table.

It is rare that individuals with Down syndrome are included in public discussions of prenatal testing without concerns being raised about the exploitation of vulnerable individuals coached to promote political or religious agendas that divide our families and communities rather than to illuminate issues. As young people have grown up included in mainstream classrooms we have discovered that they are capable advocates who can speak for themselves. And their presence speaks no matter what an individuals communication challenges may be.

The work of building inclusive communities for all our children makes us even more sensitive to attitudes that our sons and daughters were mistakes that could have been avoided had the technology and will existed in previous decades. Even within advocacy networks we may find the old disability hierarchies create obstacles that shut our families out. The presence of individuals with Down syndrome may be the only thing that can over-ride the myths, fears, and stereotypes that persist despite our life-long efforts. Sometimes parents are accused of falling short of full advocacy as compromise and collaboration with the education or disability services industries pulls them to the other side.

Family members going about the business of their ordinary lives certainly don't need to be blindsided when they turn on a morning show for light entertainment. The uninformed lack of empathy and narcissistic arrogance of entitlement that breathes new life into outdated stereotypes and misinformation about the potential of people with Down syndrome reduces the the number of opportunities now available to them. Discussions of non-invasive prenatal testing in the tenth month of pregnancy should not include a celebrations of a negative result without acknowledging the obvious prejudice displayed.

Most parents and advocates are angry when individuals with Down syndrome are not recognized or respected as citizens, as television viewers, or even as consumers of advertised products by media personalities who assume that those with developmental disabilities do not have the capacity to understand when they are being devalued and insulted.

Although the non-invasive test was being presented as an opportunity for expectant parents to prepare for the birth of a baby with Down syndrome, it certainly would have been more respectful to include someone whose presence would have resulted in a more respectful discussion. The most disturbing issue for me was the lack of understanding that ablism is a greater hindrance to most people with disabilities than their primary diagnosis. Just because a couple plans to continue the pregnancy no matter what the prenatal test predicts, they were still only potential parents of a child with Down syndrome. They cannot give permission for a public celebration of a negative test result as if they were raising an individual with Down syndrome.

And of course in this case, it is more disturbing when we realize that those responsible for what some have described as an ad for the prenatal test had no idea that parents of children and adults with Down syndrome would be perturbed by the message that the celebration of the negative diagnosis perpetuates. People with Down syndrome may face greater challenges than their mainstream peers, but it is crucial that their most notable aptitudes and accomplishments should also be noted. After all, a negative prenatal test does not guarantee parents that their child will be free of challenges or reach the potential we usually celebrate at birth.

Beyond that, media celebrities should be aware that unconscious ablism is as destructive as homophobia or racism. Those who understand that it is unacceptable to say they are glad they don't have LGBT coworkers or people of color living on their block may not realize publicly celebrating a negative prenatal test result is rude, ignorant and hateful.

It is no accident that the international disability rights movement demands: "Nothing about us without us."

Browse at your public library, local bookstore or online retailer for books like:
Nothing About Us Without Us: Disability Oppression and Empowerment; Prenatal Testing and Disability Rights; or No Pity : People with Disabilities Forging a New Civil Rights Movement

Parents criticize word choice:
Today show stirs emotions with prenatal test for Down syndrome

Cowgirl Up:
"We're Safe, the Baby Does Not Have Down Syndrome" & My Break-Up With The Today Show

Half a year later, the Today Show gets it wrong again.
"Hey, Today show: Down syndrome ≠ heartbreak!"

What’s missing from non-invasive prenatal testing for Down syndrome

New Tests, Same Old Bias and Misinformation on Down Syndrome

Two conversations that changed my life | Tamara Taggart | TEDxSFU

Tough Calls on Prenatal Tests - Non-Invasive Screen for Down Syndrome Confuse - or Mislead - Patients

A New Era in Noninvasive Prenatal Testing

Doctors Need to Understand Their Patients When It Comes to Prenatal Testing by Nancy Iannone

Ellen Stumbo: Down Syndrome and Abortion

NZ: Give them a chance

Researchers ‘Silence’ The Chromosome Defect That Causes Down Syndrome
Researchers find a way to "silence" the chromosome defect that causes Down syndrome, though it's years away for humans.

"Asking you to give me equal rights implies they are yours to give. Instead, I must demand that you stop trying to deny me the rights all people deserve."

On Adopting a Kid With Down Syndrome

National Center for Prenatal and Postnatal Down Syndrome Resources

Prenatal Testing and Information about Down Syndrome

You Should Also Read:
Prenatal Diagnosis Down Syndrome
Sharing a Prenatal or Newborn Diagnosis
Non-Invasive Prenatal Testing for Down Syndrome

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