I imagine it will not come as a surprise to most of you to hear that I was not a cheerleader in high school. I am really not the cheerleading type. Waving pompoms and yelling “rah rah rah’ is not my thing. Yet, in my own way, I see myself as a cheerleader for Congregation Beth Hatikvah. I believe this is a very special place, and I consider myself fortunate to be part of this creative, collaborative, joyful, stimulating, and caring community.
And because I love this community so much, when I see the huge sign in the foyer that says “You belong at CBH” or the bracelets everyone is wearing that say #CBHBelong, I really want it to be true for everyone. I want us to live up to our advertising, which means that we must value every person who walks through our doors.
The value of every human being runs through Jewish tradition. The very beginning of the Torah tells us that the first human beings – male and female – were made B’Tzelem Elohim, in the image of God. Therefore every single person is worthy of respect and honor. In the Book of Numbers, when Moses takes a census of the Israelites, generations of commentary conclude that the Torah is teaching that every person counts.
These are magnificent aspirations, that we treat every person with respect, that every person counts, that everyone belongs at CBH. But my “non-cheerleader” soul knows that it is very difficult to fully live up to these ideals. As good as we are, we can always do better.
One of the areas where I suspect we can do better is inclusion of people with special needs. The Jewish Federation of MetroWest periodically sends out resources related to accessibility and inclusion. Over the summer Margie Ticknor and I began to think and talk about how well our community does with accessibility. We already know that our building is wheelchair accessible – we have a ramp from the parking lot, accessible bathrooms, and there are no steps to the bima. That is good. But it only addresses one type of physical disability. As a community we have struggled to accommodate people who are hearing-impaired. My discomfort with wearing a microphone or the extra time it takes to pass around a hand-held mic for discussions should not prevent us from solving this problem. And these are only the most obvious accessibility issues.
After consulting with Rebecca Wanatick, Community Inclusion Manager at Jewish Federation of MetroWest, we decided to conduct a disability assessment at CBH this fall. We need to know more about the challenges our members face in fully belonging to this community.
After I spoke about belonging on Rosh Hashanah, quite a few people told me that the distinction between belonging and fitting in struck a chord. One of the ways I believe “fitting in” manifests is not being open about our physical, emotional, and learning differences. Many of us are still uncomfortable around people who look, behave, process, or learn differently. Even the language we use indicates the difficulty – disabled, special needs, handicapped, mentally ill. Most of these terms imply that there is something that is considered “normal” and there is some degree of stigma when you don’t “fit in” to the conception of what is “normal.”
I read a statistic recently that 1 in 5 people in the world have some kind of disability – physical, emotional, or developmental. I was surprised the number was so low. It seems to me that every one of us experiences some kind of disability in our lives – whether due to illness or accident or an emotionally painful period in our lives when we need additional support. And most of us will lose physical and/or mental ability as we age. The either/or distinction between those who are physically or mentally disabled and those who are not seems false to me.
Our daughter Bella became an Occupational Therapist last year and is now working with young children, many of whom are diagnosed on the autism spectrum. She thinks that the spectrum is an artificial concept and suggests that there could be a spectrum of behavior that includes all people. Without the stigma of “being on the spectrum,” we would just be people who fall somewhere on a continuum of how we interact with others and how we perceive the world in different ways.
As we seek to become a community where everyone feels they belong, I found the vision of Rabbi Elyse Wechterman helpful. Rabbi Wechterman, who is the Executive Director of the Reconstructionist Rabbinical Assembly, has a daughter with special needs. She wants everyone to remember that human beings are never only one thing. She describes her daughter as an excellent bowler, a sports fan, a volunteer in her school, a funny, caring person. She writes: “The same is true for all of us. None of us is ever any one aspect of our identity – yes, some of us are queer, trans, cis-gender, white, people-of-color, disabled, temporarily abled, working class or middle class or a host of other labels that are put on us or claimed by us. But we are also siblings, parents, friends, athletes, musicians, artists, cooks, lacto-intolerant, meat-eaters, text-lovers, meditators or bowlers! How bleak the world would be if we were only our primary, or most marginalized or most recognizable of our identities.”
Rabbi Wechterman says: “I know it’s a bit of a naïve and idealistic vision, but I would like to be a part of a Jewish community that celebrates and welcomes the all of every one all the time. I want to be a part of a community where the first question asked of every person is not “how do you fit here?” but instead, “What gifts do you bring to us?” And then the second question, a more reflective question, should be, “What do I/we/the community need to know and do to make it possible for you to share those gifts?”
Rabbi Wechterman’s vision of a community where everyone’s gifts are valued is a reality at The Friendship Circle’s newly opened LifeTown. LifeTown is what I would call “a mall with a heart.” With shops, movie theater, bank, and supermarket, it provides people with special needs a place where they can gain life skills and real-world experiences. At the grand opening, Rabbi Zalman Grossbaun said: “At LifeTown we are creating a reality where children and adults are not special because they have special needs or disabilities. Through job training, we will see that they are special because they have a special work ethic and dedication. Our educational opportunities will show that they are special because they possess special strengths and understanding. We’ll highlight that they are special, because they have a special perspective of the world. At social events, they will interact with their buddies, and we will see that their unconditional love makes them very special friends.”
One way that I think we can value every person’s gifts and move beyond the idea that there are some people with disabilities and some people who are normal is to try to overcome the secrecy and shame that keeps us from openly sharing our physical and emotional challenges.
Strangely, secrecy and shame can operate even when the disability is completely visible. I saw this in my own family. My mother’s side of the family has a rare form of adult-onset muscular dystrophy, and despite the fact that my uncles were in wheelchairs and my grandmother moved around her apartment pushing a chair in front of her in the days before there were walkers, no one ever spoke about it. My siblings and I got the clear message not to ask. Not until my brother was in high school and started learning about genetics, did he get up the nerve to ask whether we could inherit the disease. Sadness, guilt and bitterness permeated our family, but speaking about it directly was taboo.
If it is difficult to talk about obvious visible disabilities, often it is even harder to talk about illness or disability that is not visible. Over the summer I spoke with a congregant who lives with an invisible chronic illness. She said that people are taken aback when she talks about it because illness and disability are highly stigmatized. “But,” she added, “it’s important to talk about so people can put a face to it and have an opportunity to understand more. And that makes a world of difference.”
Even greater than the secrecy about physical disabilities and chronic illness is the stigma and shame about mental health. Rabbi Karen Landy is a friend of mine from Boston who works as a chaplain. In a Reconstructionist Symposium on Disability and Inclusion she spoke about the stigma of mental illness. “When someone is experiencing a physical illness, he or she may talk about it with friends and family, check out the over the counter medication aisle at the pharmacy and, of course, go to a doctor. When someone is experiencing psychiatric symptoms the response may be to ignore the signs and symptoms or withdraw. It is okay to talk about diabetes or high blood pressure, but in our culture, it is not okay to talk about depression, anxiety, bi-polar disorder or other mental illness.”
Rabbi Landy adds: “Every one of us wants to feel accepted for who we are. Most people want to belong, to be part of something larger than themselves, where there is a sense of community and ‘home’.” She says that even in our brokenness, we long to connect to each other, and “in the knowledge and experience of that connection, healing can begin.”
Just as with physical disabilities, the distinctions between those with mental illness and those without can be artificial. Every human being experiences emotional pain. Every person has been hurt by loss, betrayal, failure. Yet, we live in a culture that holds out the expectation that we should be happy all the time. “How are you?” we ask out of habit. And most people respond: “Great!” “Doing fine.” “Can’t complain.
I spoke to a congregant this summer who told me she didn’t want to come to services because she often cries at CBH, and she doesn’t want people to see her as weak or pathetic. I assured her that I think it is wonderful to cry in our sanctuary, a place of safety and home, a place where you do not feel alone, a place where you feel connected to others and perhaps also to God.
But I also acknowledged that sometimes people do react judgmentally. I shared an experience I had this spring when the combination of the shooting at a synagogue in California, and the Holocaust Memorial Service in Summit hit me hard. I mentioned at services that Friday that I had been crying a lot. Later, a congregant wrote to say that she was concerned about my saying that I had been crying because she didn’t want people to see me as weak or too emotional. I appreciated her concern and perhaps there are people who see that as weakness, but I want people to know it is okay to feel deeply; it is good to cry.
I tell these stories to acknowledge that the shame and stigma is real, and if it seems too vulnerable even to cry or talk about crying, how much more difficult must it be to acknowledge more serious emotional distress or mental illness. Yet, if we want to create a community where everyone is valued and feels safe to show their true selves, it has to be okay to be vulnerable. We have to recognize the strength in our vulnerability.
I also want to address learning differences. As Jews we come from a tradition that values achievement, particularly academic and intellectual achievement. Our tradition is based in reading and analyzing texts and verbal argumentation. This has served us well and enabled us to survive and thrive in a world that has not always been welcoming to Jews. But how does this affect those who do not excel academically? What does this mean for those who have difficulty reading and writing or who learn best in other ways? We all want to kvell when our children get into top colleges or get impressive jobs, and it is natural to feel pride in achievements. But what happens when we or our children do not excel in that particular way?
Rabbi Lawrence Hoffman writes: “The first question adults often ask when meeting someone new is: What do you do?” And he wonders: “What must you think of yourself if whether from birth or illness or accident, you do not have the ability to achieve?” Rabbi Hoffman points out that Judaism has an answer for what constitutes human worth, and it is based on the way God is described. When Moses askes to see God’s face, God tells him to stand in the cleft of a rock and God’s goodness will pass before him. This is what Moses sees: “A God compassionate and loving, slow to anger, abounding in kindness and truth, extending kindness to the thousandth generation.” These are the 13 Attributes of God that we recite on Yom Kippur. As Rabbi Hoffman points out: “Not one word about accomplishments!”
On this holiest day of the Jewish year, we are reminded that what matters to God, and what matters to Judaism is not what we accomplish; it is who we are: kind, compassionate, loving, and forgiving.
Soon we will send out the disability assessment developed by the Jewish Federation of Greater MetroWest. There will be a link to a questionnaire in BetNet, and I hope that everyone will take a few moments to respond, whether or not you usually think of yourself as a person with disabilities or the parent of a child with special needs. I encourage you to be open and honest about how our community can be more inclusive. I hope you will overcome feelings of shame and secrecy and share your experiences.
Once we have written responses, we would like to hold focus groups to hear your thoughts about this in a more meaningful way than can be accomplished with a questionnaire. I am excited to begin this process. We are a wonderful and caring community, yet I still believe we can do better at creating a place where all people belong. I believe we can do more to create a holy community in which we recognize that everyone is created B’Tzelem Elohim, in God’s image, a community that defines holiness by the way we treat our most vulnerable members, and the way we value every person’s gifts. For that, I will happily be a cheerleader.