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.
[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.
