Supporting Children With Disabilities in Challenging Times

On April 5, 2020, a group of bioethicists and scholars issued a statement highlighting the importance of being aware of—and preventing—discrimination and oppression toward people with disabilities during the coronavirus pandemic.[1] The statement is well worth reading in its entirety, but there are several key points worth emphasizing herein.

First and foremost is the foundational perspective that when the society is in crisis, it is crucial that we bear in mind that how we treat the most vulnerable people is a direct reflection on "what sort of society we want ours to be—we are constituting ourselves as a certain kind of people." Further, "when faced with scarcity, some will be tempted simply to pass by those who are older, the physically disabled, or cognitively impaired, those who seem to have little to contribute to our common life... We believe that such approaches are unacceptable, and recent statements by HHS nondiscrimination against the elderly and the disabled support this judgment." [1]

In addition to the broader public health issues of providing treatments and basic medical support, the principles of fundamental human rights also have implications for everyday life under the new rules of social distancing. I have talked to many parents who have described the challenges of being at home and having schools closed. These burdens can often fall even more heavily on families of children with disabilities, and I urge everyone to bear in mind that children with cognitive impairments, autism spectrum disorder, Down Syndrome, and other developmental differences may not comprehend and readily comply with social distancing recommendations. These children—and their families—need community support and tolerance now more than ever.

At the beginning of March, before social distancing went into effect in the U.S. (and in Nashville, Tennessee), I attended a play that included actors who have disabilities. After the play was over, the actors gathered in the rear of the theater, and I made sure to congratulate everyone, paying special attention to the actors with developmental challenges. A young man with Down Syndrome was especially pleased with the attention and the kind words that I offered and gave me a big hug. His mother was mortified and told him that he wasn't allowed to hug people anymore. And she was very worried that I would be upset—of course, I was not—I understood that he was acting in his usual way pre-social-distancing restrictions.

But parents have reported to me that when their own child with disabilities doesn't comply with strict rules—for example, walking too close to other people outdoors (not touching, but less than six feet apart)—some people have been yelling at the children and, in all too many cases, berating the parents. I can assure everyone that these parents are doing the best they can and that tolerance and forbearance are important within the broader context of staying safe.

Bear in mind that children with disabilities may have extreme difficulty with transitions and that they have been displaced from school and other routines, which can be especially stressful and result in increased "meltdowns." Also bear in mind that exercise and movement may be an important part of how families manage and support their children with disabilities so that being outdoors—at least part of the day—can be crucial to reduce challenging behavior and to support that child's learning. Neighbors and communities can work together to solve these problems.

An example of how there can be misunderstandings under current social distancing rules came to my attention recently. A family living in a condominium complex in Torrance, California, whose son does require movement and outdoor exercise as an important component of his intervention program, described their plight. Evidently, community parks, beaches, and other public places where they normally go to move and exercise are completely off-limits to everyone.

Adapting to staying within the condominium complex, they began going swimming in the pool every day and walking within the boundaries of the complex. Even though this seems to be an ideal solution—the family can better restrict his movements in the pool and the condo complex to ensure compliance with social distancing—some of the neighbors complained, and the pool was shut down. This child's mother also mentioned that some of the neighbors said unkind things to her and to her son when they were walking around the complex.

And this is far from an isolated incident. In keeping with the statement from the bioethicists, I urge communities to be considerate and supportive of these more vulnerable citizens.

It is also noteworthy that many neighbors and communities have already actively embraced the ethical principles described in the Public Discourse article and have been altruistic, supportive, and tolerant. Some communities have provided special access to parks and other outdoor facilities to families of children with disabilities. Also, a family living in Italy, where the SARS COV2 outbreak has been especially deadly, told me that the public health officials there are distributing blue wrist bracelets for the children to wear so that other community members are alerted to the fact that the child—and their family—may need to be outdoors, even when others are not permitted to be outside.

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As an example of selfless outreach, a colleague of mine, Dr. Miriam Lense, is a clinical psychologist with special expertise in music-related interventions for people with disabilities. She has partnered with the National Endowment for the Arts (NEA) to create music learning modules that are now available online. In addition to being fun and easy for parents to learn and do with their children, there is scientific evidence underlying the fun: Professor Lense is an accomplished scientist and has published a number of studies that support implementing these particular lessons with children with disabilities. They can be accessed here. Similarly, some of the graduate students at the Vanderbilt Bill Wilkerson Center have provided links to materials they have found helpful for the families they serve.

These are difficult and frightening times. Despite this, it is crucial that all of us—and our communities—maintain our humanity and ethical perspectives in the face of adversity and fear. This is a real opportunity to demonstrate precisely what sort of society we want ours to be and to constitute ourselves as a certain kind of people: caring, compassionate, and tolerant of all citizens, including those with disabilities.