Invisible Men and Women: Bringing Special-Needs Adults Out of the Shadows
By: Hannah Brown
Tags: Disability, Parenting, Autism, Special Needs, Down Syndrome

When The New York Times published the article, “The Undoing of Jeffrey Toobin” by Katherine Rosman and Jacob Bernstein on Tuesday, many scanned it for gossip about The New Yorker and CNN contributor and author Jeffrey Toobin’s Zoom call scandal.

Photo by Nathan Anderson on Unsplash

But others found something much more surprising than salacious details about Toobin exposing himself in a call with colleagues last October. They found that his brother, Mark, was mentioned in the article.

While it might seem a routine matter that the subject’s brother was discussed in newspaper profile, this reference was actually quite revolutionary. That is because Mark Toobin, who has Down Syndrome, has almost never been mentioned by name before as part of the Toobin family.

As the article pointed out, Jeffrey Toobin had been quoted in a 2015 interview after the death of his mother, television news correspondent and producer Marlene Sanders, as saying, “This was her life. She had a job and she traveled and she had a son she loved.” But as Tuesday’s Times article notes: “She actually had two sons. Mr. Toobin’s younger brother, Mark, was born in 1967 with Down syndrome and lived away from the family, most recently in a group home in Connecticut. Mark was not mentioned in Ms. Sanders’s Times obituary.” Nor was Mark named in his father’s New York Times obituary in 1984.

As the mother of a special-needs son, a 24-year-old with autism, I am not writing this to condemn the Toobin family for their decision to have their son who has Down Syndrome raised in an institution. Decades ago, doctors routinely urged parents of children with Down Syndrome and any other special needs to institutionalize them, saying that this would be the best solution for everyone.

If my son’s autism had been apparent when he was born (autism is rarely diagnosed until a child is at least two) and if medical professionals had encouraged me to have him raised in an institutional setting, I very likely would have made that same decision, as countless parents have done over the years. I am extraordinarily grateful that I was not pressured in this way and was able to raise him. He now lives in a small special-needs community close to home where he studies carpentry and comes home on weekends and holidays, like any 20-something, except that he needs more care than most. I cannot imagine what my life would be like without him.

It’s very true that the 1960s and earlier decades were a very different time from the 1990s, when my son was born, and thousands of children were institutionalized and written out of their parents’ lives. The playwright, Arthur Miller, institutionalized his son, Daniel, who also had Down Syndrome, when Daniel was a child and reportedly had little contact with him for most of his life. Likewise, Daniel Miller was not mentioned in his parents’ obituaries and few knew about his existence until a Vanity Fair article about him was published in 2007. And, in the recently released season of the Netflix series,“The Crown,” Princess Margaret discovers, to her horror, that several of of Queen Elizabeth II’s cousins were secretly institutionalized as children and although they were listed in family histories as dead, they are very much alive. The Royal Family has reportedly been very critical of the series and insisted that it be labeled as fiction, but this storyline turned out to be true.

These are strange and telling omissions and they speak volumes about society’s conflicted attitude about people with special needs, that persists to this day. Obituaries are public records. They are often the first and sometimes the only finding that will come up when a name is googled. I have written obituaries for a newspaper and I know that it is extremely important that they be accurate. So it is upsetting that, in such cases as the Toobin, Miller and Windsor families, no one thought to set the record straight when these obituaries were written. Rebecca Miller, Arthur Miller’s daughter, made a documentary about her father, Arthur Miller: Writer in 2017 in which she spoke about her brother, whom she is now in contact with, and said that she planned to ask her father about Daniel in the interviews she did with him for the film. But she acknowledged she found it difficult to speak to her father about this subject and put if off. Her father died before she spoke about it with him, which is too bad.

Recently, though, I have become aware of the fact that people still tend to think of those with special needs as children only. When the coronavirus pandemic hit and I spoke to colleagues about how it was affecting my son, I realized they assumed he was still in the special-education system. It didn’t occur to them that he was no longer a school-age child and had “aged out” of the education system over three years ago, when he turned 21. Very few articles in the press have discussed the impact of COVID on special-needs adults, some of whom have difficulty understanding the nature of the crisis and why they may not be allowed to see their families. Even though they have not been written out of the equation entirely, they are rarely on people’s minds.

Having a child who with special needs, particularly one who lacks the skills to live independently, involves many difficult compromises. I can understand why parents who made this decision to institutionalize their children at birth are uncomfortable discussing it. There have been huge inroads in educating and integrating those with special needs into society between the 1960s and the present and by today’s standards, the decision to give up a child like that seems incomprehensible. But I know some people will judge me negatively for letting my son move to a group home — some disability advocates consider any setting where people with special needs live together to be exclusionary and negative — and I don’t aim to judge anyone.

Nevertheless, it is disturbing when the existence of people with special needs is not publicly acknowledged, as if they were never born. It is telling that just a few hours after the New York Times article was published on Tuesday, Jeffrey Toobin’s and Marlene Sander’s Wikipedia pages were edited to include this other son. Someone — I suspect many people — who know him must have been watching closely. This is a wonderful and important step in bringing all those invisible special-needs children, many of whom are now adults, out of the shadows.