Editor’s Note: The following annotated speech was given by keynote speaker Fran Abramson at the USCJ Ruderman Inclusion Gathering in Chicago on March 18. It is her account as the mother of a child with cerebral palsy and the ways in which they have struggled as well as been embraced in the Jewish community. Thank you to the USCJ for sharing this blog.
It is such an exciting time for me as we stand together, to work together, to build together. As I say that though, I am aware, stunningly aware of my own hesitation, my own sense of vulnerability and yes, let’s just say it – FEAR. FEAR with a capital F. The F word.
We may understand the meanings of belonging and inclusion from our icebreaker, but what are we prepared to do, what are we able to overcome, what are the fears/longings that move us into or away from the circle?
I am a social worker. My practice is diverse and really embraces the entire lifespan. In its diversity; however, the common thread, the theme that brings us all together is the underpinning of wanting to be understood, to be part of something and the anxiety that this creates.
So, my kids are adults now, in their mid-30’s, but I still talk about an early experience that humbles me to this day. Our family was out dining with all our equipment – a tumbleform chair for Lauren, who has cerebral palsy, a baby seat for our youngest and more. There was a woman who kept looking at us and I, having taken my first advocacy lesson and being told to prepare for one battle after another, was ready for the confrontation. I was prepared to discuss cerebral palsy, explain and apologize for what always felt like the “bigness” of our family. As I began my “lesson,” the woman stopped me midstream and said, “I was only looking at you because your daughter has such beautiful, curly hair.” Really, you were not seeing us through the lens of disability and chaos (as I often experienced personally), but looking at us through the lens of a typical family with extraordinarily curly hair? Impossible!
This early experience outside our personal bubble was mind-blowing and has remained a constant reminder of my own FEAR, my own struggle. Before I became the parent of Lauren, what did I do, what did I say about families I saw or avoided who experienced special needs? How did I treat elders? Those with mental health issues? I assumed the public looked at us with curiosity, as troubled, as something that is difficult to watch – how did I see us?
When we first joined a local synagogue so that our oldest daughter could attend preschool classes/Sunday school classes, the rabbi sat with us and offered to hold Lauren, who couldn’t sit independently. That gesture of kindness was so big, I marvel at it to this day.
We have always been affiliated with synagogues, but often gave the synagogue in which we participated a “pass” as long as my other kids were involved. My other children had sleepovers and friendship circles that extended beyond the school day. Those things were rare and challenging for Lauren. But, there were those brave families who overcame fear and included Lauren. The dilemma is that as she got older, those same opportunities didn’t come without lots of struggle. Lauren’s adult life in the mainstream of Jewish life was more constricted, less participatory until others took charge.
At one synagogue, the rabbis worked with Lauren’s assistant, so the shul had to acclimate to Lauren’s presence by including non-Jews, educating and accepting the richness of her expanded experience with others, tutor and Lauren to develop a relationship with her before she became a bat mitzvah. In the day, it was still a rather new experience to become a bat mitzvah in the way that Lauren was encouraged. The rabbis learned her communication device, her style, her sense of humor and personality. They also were willing to travel to our home and look at ways they could know her fully.
We participated in a minyan at another synagogue. Lauren brought her computer, her voice and programmed greetings and thoughts that she could share at kiddush. One day a lay leader approached me saying that he sensed that Lauren had much to say. He wondered if he could send me his dvar with the questions typically used at this shul for discussion. I would then discuss the Torah portion with Lauren at home, program her talker and then she could begin the discussion. This gentleman went on to send an email to the entire community offering this suggestion and ways for Lauren to contribute. What sensitivity, what heart, what acknowledgment of Lauren in the space, not just as someone we kindly include by sitting near her, but as someone who could participate and deserved to participate as all of us desire. And, while not all of us want to speak in groups, Lauren relished those opportunities.
What was particularly poignant about this experience was that I had thought about the limitations of Lauren’s participation for a long while. She had attended day school all her life, was a shul member all her life, and of course, she had something to say. But I didn’t want to inconvenience anyone, be conspicuous, ask for too much. FEAR.
The above comment leads me to the next example of my own fear. It is the story of Sukkot. One year, the executive director of the synagogue asked me why Lauren and I typically left the service and celebration earlier than anyone else. We would have a brief time with the congregation, but would leave just as the party was getting started. I shared that Lauren needed special bathroom accommodation that even the accessible bathroom could not provide. The executive director asked to meet with me the next day and as we toured the building and easily (from my perspective) made the transition of space necessary, we became more fully participatory. Someone noticed us, sought out ways to be inclusive and welcomed the opportunity to bring us into the circle.
I want to emphasize that as synagogues look at their capital campaigns and building projects, there must be a way to conceptualize both the temporary as well as the permanent solutions. At the synagogue in which we currently participate, the capital campaign looked at a total shul renovation, but as our committee worked with the shul leadership, temporary ramping was built in time for Rosh Hashanah. Even then, there were folks who said, why do we need this ramp – where are the wheelchair and walker users? We don’t see the purpose.
Change is difficult and can be so overwhelming that the people who challenged the project couldn’t see that the reason there were no wheelchair users in the minyan was that it wasn’t accessible!
Lauren has a big voice. We don’t use her communication device during a service, but she sings and talks vocally throughout services. It’s another one of those moments that could embarrass her brother and sister when they were younger and a reminder that brothers and sisters experience their siblings’ disability in a myriad of socially and developmentally normative ways. At any rate, at another synagogue in which we participated, the rabbi would hear Lauren and normalize her loudness by thanking her for being part of the service and sharing how glad he was that she was at the service, thanking her for praying with the community.
There is another lesson I have learned through this journey. When I was going through some physical problems and was unable to get things together, there were people who could cook, take my two kids to school, etc. I had not taught anyone how to care for Lauren. I was afraid it was too much, too physically demanding, too much of an imposition. The dilemma there is obvious. Fear captured me, sat with me and prohibited me from reaching out and joining in community.
My son nicknamed me Mama Midrasha because I like stories, I like our stories and I love to hear others. Creating narratives helps me be more aware, more sensitive to my own vulnerabilities, strengths and loves. For me, it’s about seeing the relationship between fear and awe.
One last revelation for me was the power of our united voices. From the beginning of the journey, it was teamwork and shared values, even if there was a hesitancy and lack of knowledge about how to harness those values into action, and participation of all – leadership, families, those with disabilities. For whom we often speak, but don’t engage in the process that made the difference.
I would like to share one more piece to my personal story. My daughter, Lauren Elizabeth, Leora Elesheva, died recently. At her yahrzeit, I shared with the congregation and rabbi that Lauren’s favorite prayer was Aleinu. I joked that I wasn’t quite sure whether it was a favorite because kiddush was nearing or whether she really liked the prayer. But, I do know what was important to her – in that prayer, the words ha and hu were words she could verbally say. It allowed her to have a community voice like the others. In reciting that prayer that day, the rabbi invited those gathered to shout out ha hu as we davened and he stated that it was important to bring Lauren into the space with loud voices and intention.
My work continues in Lauren’s memory. I also look in the mirror. FEAR. I am aging. My health may be fleeting, my physical and cognitive abilities may change and I may need help. How many of us look in the mirror and see our own vulnerability, the possibility of our own health losses? FEAR and more to consider!
In closing, Abraham Joshua Heschel, to paraphrase, says that an individual dies when surprise is lost. The experience of being unsettled, the genius of imagination, magic, curiosity and creativity are the cornerstones for action. With love we set goals, with fear we set boundaries.
At a recent workshop, I heard two comments that really spoke to me. First, the enemy of change is silence. Second, strategy and ideology must coexist. And so, the call to action has been made, our meeting here today is proof that we are ready to join together, to use fear, harness our energy to create a space for all of us.
The best is yet to come.
Fran Abramson is a licensed clinical social worker practicing in the Chicago area. She has certifications in hospice care, gerontology, domestic violence and case management. Her areas of practice also include working with adults who have intellectual disabilities. Fran has been an active member of Keshet, a Chicago based organization serving people with disabilities ages 3 and up, for over 30 years and is, with others, a founder of Center for Independent Futures, a grass roots organization supporting independent living for individuals with special needs.