I got a painful fundraising letter from an unsuspecting source: The National Council of Jewish Women (NCJW). It was surprising because NCJW has smart leaders, plus deep and powerful roots in fighting for social justice. The letter was a fundraising appeal, written by a woman who chose to have an abortion in the 32nd week of pregnancy due to a medical diagnosis that her unborn “baby” would have significant disabilities. NCJW used the letter as a rallying cry to ask donors to support NCJW’s pro-choice advocacy and organization overall.
It is true that Jewish tradition considers an unborn fetus to be a potential life, not an existing life. But if that is the belief of the organization, then it should have been called a “fetus,” and not a “baby” or a “daughter,” as it was called repeatedly in the letter. The woman who wrote the letter is all over the Internet – in Tweets, standing with Members of Congress — using the words “baby” and “daughter” when she speaks of her abortion. The letter put out by NCJW said, “As much as we loved and wanted our daughter, we didn’t want her existence to be one of constant suffering.” And later on in the letter the author wrote: “I have been labeled…selfish for not wanting a disabled child.”
By using the words “baby” and “daughter”, the letter denied people with disabilities the very right to exist. While many people in the disability community are ardently “pro-choice,” to many in the disability community, the letter smacked of the Eugenics movement.
Moreover, it turned out that NCJW not only used this story for a fundraising letter, they also gave the woman and her abortion provider an award for their advocacy, and had them address their national convention to discuss these issues. Since when does the Jewish community give out awards for the extermination of human life based on disability? Our Jewish values teach B’tzelem Elohim (that each person is created in the Divine Image).
My heart goes out to this woman who had an abortion back in 2009 when her doctor clearly painted the darkest of pictures of disability for her. It was a complex and involved diagnosis, and she made hard personal decisions. It’s not uncommon for some in the medical community to look down on people with disabilities and to share their thoughts in ways that end the lives of potential people with disabilities, or even the lives of actual people with disabilities.
Abortion is a heated and painful topic. People have very strong opinions about being “pro-choice” or “pro-life”. My purpose here is is not to take a public position on that deeply personal and important topic. It’s about the social justice of CALLING a fetus a person, and then saying that the person should be terminated based on disability.
I decided to bring my concerns about this fundraising letter public because in light of our own history, Jews must remain vigilant in the face of harsh bigotries and what they can cause. The original letter had gone to thousands of Jewish households, so the conversation could not be limited to only a small group. We cannot allow the verbiage of intolerance to make its way into the lexicon of our own discourse. By reprinting the appeal letter, as written, NCJW became complicit in anti-people with disabilities rhetoric.
The top leadership of NCJW, despite their focus on social justice, was initially shocked to hear that I–and many others–found the letter to be deeply offensive. Indeed, despite NCJW’s history of being sensitive to those who are disenfranchised, they were unaware that in many countries 90% of women who learn they are carrying fetus with Down syndrome choose to abort. Down syndrome is not painful, or fatal, or progressive. It is just a different variation of human beings who are equal to all of us in G-d’s eyes.
The Jewish community is rightfully obsessed with the challenges we face from anti-Semitism and the delegitimizing of Israel. Those problems come from long stigmas and hatreds. So why would a community that stands up against bigots against Jews and Israel enable and even award the delegitimization of Jews with disabilities (or people of ANY faith with disabilities)?
It may be difficult for forward-thinking people in the year 2014 to imagine that the elimination of people with disabilities has become a core part of the deligitimization of the rights, value and equality of citizens with disabilities. But abortion to remove people with disabilities from the gene pool has become an obsession of some, and a shameful reminder of a devastating past when Jews, people with disabilities, and members of the LBGTQ community alike were marked for elimination during the Holocaust. This evil was done in history because of a twisted effort to “purify” the human race. I do not equate that failed fundraising letter with these massive crimes against humanity, but I do think we have to beware of the slippery slope and the examples that our institutions set in establishing tones that can lead to prejudice and worse.
Indeed, as has been recently covered in The Guardian and other publications, scientist Richard Dawkins tweeted that it is immoral NOT to abort a child with Down syndrome. (See www.theguardian.com/science/2014/aug/21/richard-dawkins-immoral-not-to-abort-a-downs-syndrome-foetus).
There are major battles fought daily between the medical models of the past that were about “curing” everything, to the new disability inclusion model of “nothing about us without us” which promotes the fact that people with disabilities have the right to make their own decisions. For example, while some say they want to eliminate Autism, many people on the Autism spectrum feel that people want to eliminate them. As science advances and prenatal testing for disability expands to show that a potential child will be born on the Autism spectrum, for example, will people chose to abort those potential children at the same rates that such proceedures are done in the case of Down syndrome? After all, neither Down syndrome nor Autism is physically painful, fatal, life threatening or progressive. When will we start to ask tough questions such as, “will entire sections of our potential population be terminated pre-birth?”
I am grateful to NCJW’s CEO, Nancy Kaufman for her willingness to engage with me and other disability leaders to start a dialogue on these issues via email, phone and in person. This conversation also included senior members of their staff and top lay leaders. The NCJW view, as Kaufman put it, is that NCJW believes that “the decision to terminate a pregnancy anytime in the term of the pregnancy is a decision between the woman and her husband, doctor and family. Nothing written in the appeal letter was intended to be anti people with disabilities or raising children with disabilities. The word “baby” was the word used in the letter but we would prefer the word “fetus” until it becomes a life at birth. NCJW has long advocated for inclusion of people with disabilities in all spheres of life and we were very early supporters of the ADA and almost every bill since then. I appreciate your bringing your concerns to us concerning the letter and how it was perceived by some people albeit not how it was intended.”
Not long ago the Washington Post posted a brilliant blog written by a Jewish Mother whose young adult child has a disability. She is a part of an online group of Jewish mothers who call themselves parents of young adults who struggle (see http://www.washingtonpost.com/news/parenting/wp/2014/09/18/you-know-that-mom-who-isnt-joining-in-the-proud-of-my-kid-conversation-yeah-ask-how-shes-doing). It’s about those of us whose children may not go on to Harvard or to win Nobel Prizes, but who are the heart and souls of our families.
According to the U.S. Census, fully 18.6% of Americans have a disability. A poll released by our group, RespectAbility USA, before the election saw that 56% of likely voters either had a disability or a family member/close friend with a disability. Yet many Jewish organizations and institutions continue to see the world through a lens that fails to be sensitive to the issues and needs of a majority of people. It is that dynamic which enabled thousands of people to be mailed the painful, insensitive and inappropriate verbiage contained in their letter.
NCJW is one of many Jewish organizations that take stands on moral issues. A related issue on the horizon for all our groups is the “right to die” movement, as we recently saw by the terminally ill woman Brittany Maynard who ended her own life on her own terms. Most Americans felt that she should have the right to make such a decision. But, as Dr. Zeke Emmanuel wrote in his Atlantic magazine piece “Why I hope to die at 75” (http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329) there are those who are not personally comfortable with life at all when there is disability involved. An organization devoted to these issues, www.NotDeadYet.org, focuses on threats towards the lives of people with more involved disabilities who are happy with their lives — but whose caretakers feel “burdened” by their existence. Indeed, as we just saw when mother Jillian McCabe threw her son with Autism to his death from a bridge, there are more than words at stake.
Think about it. When millions of people found out that Robin Williams took his own life, most felt it was a senseless tragedy. But when those same people learned that Williams had a disability diagnosis, some felt that he “did the right thing” or an “understandable thing” to kill himself. Why the double standard? These are difficult issues that must be handled with care, openness, equality and honesty.
I was pleased with the honesty and openness that NCJW had in discussing these issues even though they did not reach a conclusion I would have liked, which would have included a clarification letter to all who received their fundraising letter or a joint press call on the topic. But every group has their own politics and sometimes progress comes one step at a time. Indeed, every group should be so open to thinking and rethinking positions.
Insensitivity towards people with disabilities is very common in organizations of all faiths. However, the vast majority of Jews want our institutions to be fully welcoming of people with disabilities. Yet, we have a long way to go so we can live up to our Jewish values that all people are equal in G-d’s eyes.
As someone working for and with people with disabilities to be fully welcomed in our Jewish community, I’m happy to report that this one deeply unfortunate letter was an outlier. Recently I have received some of the best direct mail ever. Overall there has been a dramatic, positive evolution to include Jews with disabilities in the greater Jewish community. Indeed, the Jewish Community Centers of Greater Washington and of Boston, like the Jewish Federation of Greater Washington, Capitol Camps and the Foundation for Jewish Camp each wrote about their efforts to expand inclusion of people with disabilities (PwDs) in Jewish life, learning and experiences. Parents of children at the Charles E. Smith Jewish Day School, the largest independent day school in the country, were informed that they will expand their tent to newly welcome Jewish children with more involved learning differences in the future. Progress is coming. It’s not just about “talking the talk” in a fundraising letter, but also “walking the walk.” Thankfully, it is starting to happen.