Developmental Disabilities: We’ve Come a Long Way on a Longer Road

Each year, our congregation hosts a Shabbaton for Yachad,The National Jewish Council for Disabilities^[1]. Over 60 students with developmental disabilities come to KJ, and one of the students gives a short sermon from the pulpit on Shabbat morning. It is a highlight of the KJ year.

This yearly sermon represents a revolution. Fifty years ago, a developmentally disabled man would not have spoken from the pulpit, and no congregation would have welcomed a Yachad Shabbaton. The developmentally disabled were invisible, hidden away in attics and institutions. For the most part attitudes have changed in recent years. But one lingering question remains: why was there such discomfort with developmental disabilities in the first place? Why would people discriminate against the children of their friends and family? Thinking seriously about this question will force us to confront our own instinctive biases.

In 2014, a controversy erupted over a comment on Twitter by the famed biologist Richard Dawkins. When asked by a follower about the ethical dilemma of aborting a Down’s syndrome pregnancy, Dawkins wrote: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Undoubtedly, such a pregnancy presents a serious ethical dilemma, and even in the Jewish tradition,  halachic opinions on this subject are not monolithic. But Dawkins’ blithe response shocked many. How could he coldly pronounce “abort it”, as if the life of a disabled person is worthless?

But Dawkins’ point of view is not new or unique. It is tempting to compare his cold attitude towards developmental disabilities with the Nazi T-4 program, which murdered over 70,000 Germans with disabilities and psychiatric disorders. However, this analogy is deceptive; the exceptional evil of the Nazi regime would leave the impression that any policy they adopted is an outlier, the handiwork of immoral barbarians. But in actuality, the idea of murdering the disabled is quite old, and not at all uncommon. In Sparta, babies deemed “deformed” were tossed into a place called “the apothetae”, a chasm near Mount Taygetus^[2]. In ancient Rome, it was not uncommon to abandon disabled children.  Martin Luther believed children with severe disabilities were actually “changelings”, demonic beings that took on the form of a human child, and that they should be killed. He is quoted as saying: “I said to the Princes of Anhalt: "If I were the prince or the ruler here, I would throw this child into the water--into the Molda that flows by Dessau. I would dare commit homicidium on him!”^[3]

This cold view of disabilities has always found followers because it is not unreasonable. In fact, it can be seen as the practical way of dealing with a difficult situation.  When Dawkins’ defended himself, he wrote that “if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”

This view may seem cold, but it is logical. Tragically, this vision is not at all foreign to us. All too often, in the most observant segments of the Orthodox world, a Down’s Syndrome child is hidden away, because people are concerned that the developmentally disabled child will affect the shidduch possibilities of the siblings.

These attitudes are sometimes stated in a heartless and vulgar fashion. Rav Shlomo Aviner, a leader of the Dati Leumi community in Israel ruled that you make the blessing of Baruch Dayan Haemet, (a blessing generally said when informed of tragic news like the death of a relative) on the birth of a Down’s Syndrome child^[4].

Like Dawkins, Aviner sees the developmentally disabled as a liability, people who undermine the happiness of those around them. They recognize that capabilities matter;  intellectual, physical, financial. In every sphere of life, there is constant competition for greatness and achievement; and these disabled children will achieve less and require much more from their families and their community. Dawkins and Aviner approach disabilities from a utilitarian perspective, and see disabled children as a tragedy.

In the language of Rav Soloveitchik’s Lonely Man of Faith, utilitarians believe that the majestic nature of humans is all that matters. Soloveitchik writes that humanity instinctively strives to achieve majesty by controlling and subduing the world around him. And it is through this triumph that man achieves dignity and honor.

When majesty is the only parameter by which life is judged, anyone with diminished capabilities is less worthy, and the utilitarian ethic of Aviner and Dawkins seems justifiable. Instead of wondering why the developmentally disabled were once marginalized in the past, it is critical to recognize that this discrimination is not the foolishness of an earlier, benighted age, but the cold calculations of the pragmatic mind. And because it is a reasonable perspective, this utilitarian view of life can always find advocates throughout history, can always find a followers in our community, and many times, can find a place in our hearts.

But what is wrong with this perspective is that it misses the most critical dimension of life.

Rav Soloveitchik explains that humanity has a dual nature. Beyond the majestic, humanity strives for the covenantal; we create community simply because that is what the soul thirsts for. To Soloveitchik, man instinctively pursues accomplishment and greatness, but also embarks on a more important quest, for inspiration and insight. On this spiritual journey, we gain an appreciation for the miracle of life, and a different moral vision emerges:

Life is sacred.

Community is inclusive.

Love is redemptive.

Jews believe that man is created in the image of God, we believe that Kol Yisrael Ereivim zeh lazeh, that we are all responsible for and intertwined with each other, and maintain that the most important rule in the Torah is to love your neighbor as yourself.

Through the ages it is this moral vision that has challenged the utilitarian view. It refuses to reduce human existence into metrics and numbers, and sees life as a gift and privilege. And it follows that the developmentally disabled, like everyone else, have lives of infinite value.

But the utilitarian thesis fails in another way. Joy is not just measured in achievements and pleasures, and happiness is not directly related to pleasure and convenience. Indeed, the greatest joys often come from the devotion and difficulty.

In my previous synagogue, there was a young woman named Pamela who had Pervasive Developmental Disorder. Pamela’s parents are both accomplished professionals, who worked diligently to help in her development. As a child, Pamela learned how to write most of the letters in the alphabet, but the letter “e” eluded her. For years Pamela tried; and finally one day she brought home her schoolwork, with her name spelled in full, including the letter “e”. That evening, the entire family danced around the house overjoyed over Pamela’s letter “e”. Of course, her two highly educated parents were not celebrating the writing of the letter “e”; they were celebrating a triumph of love and nurturing.

The utilitarian argument assumes that happiness follows ease and comfort, while in actuality the opposite is often true. Take love for example. We all want to be loved. Yet the experience of love is not at all a passive one, of being a lucky recipient. Rav Eliyahu Dessler^[5] points out that with love, the more you give, the more love you experience. It is through the act of sacrifice that one feels love most profoundly^[6]. This insight challenges the utilitarian calculation that one is happier without the difficulty and burden of a developmentally delayed child. And this has been confirmed by studies, cited by Jamie Edgin in the New York Times, that siblings growing up with a Down’s Syndrome sibling felt it made them into better people, and that the parents experienced few regrets^[7]. Rather than being an empty burden, selfless devotion can bring one a great deal of happiness.

Of course, however rewarding the experience, there are enormous struggles. Pamela’s mother Marcy once wrote me a short note about her experience. She was critiquing a sermon I had given about Moshe’s last moments, on a mountain overlooking Israel. Marcy felt I was mistaken to portray Moshe as disappointed over the fact he could not get into the Holy Land, and sent me the following e-mail about Pamela’s graduation from her school for the developmentally diasbled:

“This past June, our family was incredibly privileged to attend a very special graduation from Summit School. To be entirely honest with you, I thought that I was going to sit through it in anger.  I thought that all I would be able to think of was: "Why could it not be Herzliah, Marianopolis or McGill?"  In a sense, I guess I thought that I would be like your Moshe on the mountain. I thought that all I would be able to focus on what was the unfilled: my unfulfilled hopes and dreams and all of the doors that Lawrence and I have so quietly closed over the years.  Instead, the most amazing thing happened.  Pamela walked in in her cap and gown with a smile on her face that could have lit the room and I immediately started to cry. I cried through the entire ceremony.  I can tell you that not one of those tears was about what was not, but instead what was and how far Pamela has come in the 17 years since her diagnosis. Lawrence and I have been very fortunate, we rarely think of what could have been.  We never compare Pamela to others, we are content to move with her on her road and to watch her grow and change. Her smile is a sign to us from God that we are indeed on the right track and fulfilling our all important mission of nurturing our very special neshama.”

This letter reminds us that there are joys that have nothing to do with conventional achievements. Happiness is not always about having a child graduate Harvard, and sometimes, even writing the letter “e” is a moment of intense joy.

The world has changed in the last 50 years. It was considered dramatic when Vice President Hubert Humphrey spoke about his granddaughter having Down’s syndrome in the 1960’s, and many look back at that as a turning point in American attitudes towards the developmentally disabled. Since then, there has been greater sensitivity and greater inclusion, and at KJ  we can be proud of 30 years of Yachad shabbatonim. But we still have a long way to go. Someone once remarked to me: “Yachad Shabbat cannot be just one day a year”, and she is absolutely right. Parents cry when their children have no one to play with on Shabbat, week after week, and they cry when there is no good Jewish education for their children. Inclusion needs to be a daily exercise, and there is a long way to go. We must do more in our community, in our synagogues, and in our schools.

But even so, we must remember Marcy’s point. We may not be where would like to be, but like Moshe on the mountain, we can take satisfaction in how far have come, and know that the progress will continue in the future.

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^[1] The Shabbaton has been sponsored since its initiation by Karin and Joel Katz

^[2] Aristotle accepts this idea as well in Politics 7:17 “Deformed offspring should not be reared.”

^[3] Martin Luther, "Historia von einem Wechselkinde zu Dessau," Sämmtliche Werke, vol. 60 (Frankfurt am Main: Verlag von Heyder & Zimmer, 1854), pp. 39-40. Translation at http://www.pitt.edu/~dash/gerchange.html

^[4] http://www.ravaviner.com/2012/12/shut-sms-190.html

^[5] Michtav M’Eliyahu, Kuntres HaChesed

^[6] Rav Dessler argues this is why the love of a parent for a child is the most profound type of love.

^[7] “The Truth About Down Syndrome” By Jamie Edgin and Fabian Fernandez, Aug. 28, 2014