With the Senate confirmation of Judge Amy Coney Barrett to be an Associate Justice of the United States Supreme Court, she will be the first mother of a child with Down syndrome to serve in that high office. What will that mean for people with Down syndrome and those who care about them?
When my daughter, who happens to have Down syndrome, was a toddler, I first heard the term “serendipitous birth.” The phrase referred to a person in a position of influence having a child with Down syndrome and thereby possibly being in a position to improve the world for those with Down syndrome.
Over the years, I have become aware of, and friends with, many influential people who may not consider the birth of their sibling or child as serendipitous, but it certainly had an influence for the better for those with Down syndrome.
To think of just a couple, Dr. Brian Skotko is a renowned medical geneticist who has published significant research studies on the impact of delivering a diagnosis of Down syndrome and best practices for doing so. He continues to conduct medical research to address a variety of conditions associated with Down syndrome. Dr. Skotko is incredibly intelligent, having graduated from Duke University and Harvard Medical School. He may have been drawn to his chosen field of study regardless of his life experience. But, it is likely more than just coincidence that he also happens to be a brother to a sister who has Down syndrome.
Similarly, Sue and Frank Buckley are also renowned researchers and educators. Sue founded Down Syndrome Education International and Frank serves as its CEO. DSE, as it is often referred to, has produced a multitude of adaptive educational tools and materials for improving the education of individuals with Down syndrome. Again, perhaps Sue would have pursued this field and her son followed in her footsteps regardless of circumstances, but it is all the more likely because Sue’s daughter and Frank’s sister, Roberta, was born with Down syndrome. Regrettably, just in the week prior to Justice Barrett’s confirmation, Roberta passed away from complications associated with Alzheimer’s. Her life inspired and motivated Sue and Frank’s work which will serve as a legacy to Roberta.
Political serendipitous births
Politics, being a reflection of society, is no different and has had its share of serendipitous births.
French General and Prime Minister Charles de Gaulle changed many of his countrymen’s attitude toward the condition of Down syndrome when his youngest daughter was born with the condition. General de Gaulle embraced his daughter, driving to their home each night no matter how long the business day kept him in distant locales, in order to tuck his daughter in at night.
Americans will recall that in 2008, Down syndrome was featured as part of that year’s presidential election. Republican candidate Senator John McCain had selected Alaskan Governor Sarah Palin, a mother whose youngest son happened to have Down syndrome. Many parents pinned their hopes that if she became a heartbeat away from the presidency, Gov. Palin’s experience may improve public policy for those with Down syndrome.
How life played out suggests the limited impact such serendipitous births may have.
In the case of General de Gaulle, while he may have made his society more accepting of those with Down syndrome, that acceptance did not result in more women continuing their pregnancy following a prenatal diagnosis. Instead, over 80% of all pregnancies carrying a child with Down syndrome will be terminated in France due to the high uptake of prenatal testing in that country.
As for Governor Palin, well, she became such a lightning rod that, for many, whatever she was for, they were against. And, ultimately, the McCain-Palin ticket lost to the Obama-Biden one.
The Positives of Justice Barrett’s serendipitous birth
While the impact of a serendipitous birth may be limited, there are some very basic, positive impacts to appreciate by Justice Barrett’s unique role as the only Supreme Court justice who is a parent to a child with Down syndrome.
On the day before Justice Barrett’s confirmation, the CBS news magazine, 60 Minutes, ran a feature on the two main presidential tickets. In interviewing Vice Presidential candidate Senator Kamala Harris, she spoke of the simple effect her service, if elected, would have in changing what some people believe is possible, by seeing a woman of color in the second highest executive office in the nation.
Similarly, mothers still are counseled by the healthcare providers, family, and friends, that she should consider what effect it would have on their own lives and the lives of their other family members if they were to continue a pregnancy after learning it is positive for Down syndrome. Typically, this counseling is to suggest the expectant mother should terminate her pregnancy for the sake of her own goals and the health of her family.
Justice Barrett would be a counter-example to such counseling.
This is not to overlook that for many mothers, they would find themselves in vastly different positions, with vastly different levels of support, than Justice Barrett when she had her son.
But, still, her attainment of the pinnacle of the legal profession while parenting a child with Down syndrome (and six other children) can have the similar effect Sen. Harris gave voice to, of showing what is possible.
The negatives of Justice Barrett having a child with Down syndrome
I hope I’m wrong about this.
But, the existence of Twitter suggests my expectations of the worst has a very high chance of coming into existence.
The moment Justice Barrett authors a majority opinion on a controversial subject, we can expect to see some commentator make some snide remark of “what do you expect from a mother of a retarded kid.”
Like I said. I hope I’m wrong. But I doubt anyone reading is willing to place a bet that that sick joke won’t be made at her and her son’s expense.
The likely neutral effect of Justice Barrett having a child with Down syndrome
It is natural, particularly for non-lawyers, to look upon Justice Barrett and hope, even expect, that because she has a son with Down syndrome, then it is more likely that she will rule favorably in cases that could improve their lives.
For instance, she is following Justice Ruth Bader Ginsburg, who wrote the lead opinion in the Olmstead case. Olmstead changed the way individuals with intellectual and developmental disabilities were included in their communities. Justice Ginsburg read the applicable law so that it would allow and even require more placement in and amongst the community, limiting the segregation of those with intellectual and developmental disabilities.
It is natural to expect that this is a decision that Justice Barrett would similarly support as it inured to the benefit of her son and those like him.
However, if that ultimately is what happens, then Justice Barrett would be violating her own statement of her judicial philosophy, which she has written, given speeches on, and gave sworn testimony about at her confirmation hearing.
As an originalist when it comes to Constitutional analysis and a textualist when it comes to statutory and regulatory review, Justice Barrett has expressed her commitment to be guided solely by the language used as it was understood at the time of the enactment of the Constitution and its multiple amendments when considering constitutional issues. When it comes to statutes and regulations, she will similarly be guided by the text of the actual statute and regulation. All personal biases, desires, policy considerations will be ignored and not play a factor.
As she said in her remarks at her public swearing in ceremony:
A judge declares independence not only from Congress and the president, but also from the private beliefs that might otherwise move her.
As a result, it is unlikely that the mere serendipity of Justice Barrett being a mom to a child with Down syndrome will have any effect on her actions as a justice.
But, that is not to overlook her being the first Supreme Court Justice who is a mother to a child with Down syndrome still can show that having a child with Down syndrome is not a burden or an impediment to a parent’s professional goals or to the health and happiness of her family.
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