Being Enough

vish rectangle retouched 1x1Chanukah is a time when we display our Judaism as a proud badge of honor — we light our menorahs by our windows and come together as a community to celebrate a shared history and a shared identity.

While we are all proud of our shared Jewish identity, we also would like to take this Chanukah season to highlight the stories of the other, intersecting identities within the Jewish community. Kolbo Fine Judaica Gallery is excited to share the second post of our Intersecting Identities series, written by guest blogger Kayla Neumeyer.

 


 

Being a person with a disability, and growing up with a sibling with a disability, has profoundly shaped my Jewish identity. As Jewish immigrants from Argentina, my parents first lived in Canada, and then the United States, just before I was born. Back in Buenos Aires, they had a large Jewish community, including a large extended family, and the shul co-founded by my grandfather following his escape from Germany during the Holocaust.

My family quickly experienced their first barrier to the Jewish community when they were unable to pay the fees associated with joining the local synagogue in the San Francisco Bay Area. Not too long after, when my brother was born, my parents again hoped to find a communal Jewish space. Up came the barriers again: the synagogues and community spaces we entered were not prepared to accommodate children with additional needs, including many Jewish education programs for kids.

Shortly after, we connected with a Chabad rabbi and his wife who were new to the area and intended to start a branch of the Friendship Circle, an organization pairing Jewish teens with Jewish children and adolescents with disabilities to encourage them to develop relationships and engage with Jewish culture, tradition, and religion at a developmentally appropriate level. My brother was one of the first children to join, and I was then one of the first teen volunteers. Suddenly, we had a Jewish community. There were events, holiday parties, etc. that we could attend, because of the shared understanding that all would be welcome, regardless of whether kids could not sit through the Purim play, or paced the room as a way to listen, or bolted towards the door and needed to be supervised. This community built the capacity to let Judaism and disability exist in the same space, not only as a courtesy but as its very mission.

Despite our connections with Friendship Circle, my family’s limited involvement in public Jewish community hadn’t given me great exposure to what every young American Jew seemed to know and have grown up with. I hadn’t gone to Jewish day school or sleepaway camp, I hadn’t learned the prayers or had a bat mitzvah. In college, I tried to become involved with Jewish life, despite not feeling “Jewish enough.” My anxiety often was so limiting of my ability to attend that it only intensified my feeling of outsiderness. Few of these groups and events had explicit language around accessibility or how one with social and sensory needs might step into a community. At the same time, I felt that there were those with much bigger barriers than me. My invisible disability added not feeling “disabled enough” to request accommodations.

Due to my brother’s stereotypical presentation of autism which looked in the way that the professionals and the media said it should, and the limited knowledge base around autism at the time, I was not diagnosed as autistic myself until just after college. A life of patchwork labels and diagnoses behind me – stubborn, oppositional, lazy, overly sensitive, eating disordered, and severely mentally ill – had left little room for another explanation: my sensory and nervous system did not respond to the world in a typical way, and the presentation of autism in girls and women had been so understudied and poorly understood that I flew under the radar as simply a poorly behaved child. It wasn’t immediate, but my late autism diagnosis allowed me to slowly understand myself and give myself the room I needed to identify and meet my needs, even if they appeared atypical to others.

I graduated college, went to graduate school, and was working in Boston before hearing from a friend with close connections to a Jewish community. She described the group as young Jews fighting for social justice and rooted in Jewish tradition and ritual. I had some reservations, but at this point, I didn’t have any communities in Boston at all. With a lot of hesitation, I went to one of the Kavod community’s first meetings of the New Year (5778) that was described as a visioning session to think about the future directions of the organization.

At one point we broke into groups, and I joined two strangers at one piece of butcher paper labeled Chesed. It was a new word to me: and loving kindness was hard to grasp as a translation. I listened to a longtime member talk about the way that they have tried to live the value of Chesed by supporting members through times of struggle, and in times of joy. This opened up a new way of thinking for me about interpersonal responsibility, and the ways that making Jewish spaces accessible to folks with disabilities was both in line with, and called for, by our texts and traditions. I not only quickly became involved with the organization but began to participate and take action around increasing the accessibility of our programming.

As I became more deeply involved in the Boston Jewish community, I realized that there were still limits to the understanding of disability in different spaces. As in the wider world, many efforts on expanding access to Jewish community focused on clear barriers, such as the physical accessibility of the space. This critical need for meeting places that can be reached by people with limited mobility is one that has a clear problem and a clear solution. Committing to holding events at wheelchair-accessible spaces has been a huge step for many communities and congregations towards their efforts to expand their accessibility.

However, efforts to accommodate and support folks with invisible disabilities, or even members with additional needs, have been slow to come by. Often, we are the people who haven’t actually even made it to the event because of exhaustion, anxiety, lack of transportation, or pain. We are the ones who attend but leave early due to the fluorescent lighting and large, loud groups. We are the ones that often feel simultaneously “not Jewish enough” and “not disabled enough” to raise our voices and carve out our own spaces in communities we haven’t always felt supported by.

Strong efforts by Jewish organizers across communities and congregations have begun to shift the narrative. Piece by piece, we are able to put in place the systems, training, and leaders that allow us to create fully inclusive communities. By broadening our idea of accessibility, we are able to more easily anticipate the needs of anybody that may walk through the door. We are emboldened by the knowledge that creating supports and access meant for folks with disabilities also ultimately benefits everybody. It is my hope that what appears to be an accommodation will, ultimately and simply, become part of our culture, and provide benefit to all.

Early efforts to expand accessibility can include detailed accessibility and event information in event descriptions, providing agendas/schedules ahead of time, having multiple forms of seating, designation of a quiet area for sensory breaks, registration forms that allow individuals to communicate their accessibility needs prior to an event, providing transliterated text, calling out page numbers during services, and designating a point person who may be approached by participants with accessibility needs or concerns, and that can monitor the room to offer additional support as needed.

Still, the most powerful tool in the toolbox is building strong relationships with people across difference. When I feel heard, accepted, and welcomed, I am able to more easily communicate my needs without the feeling that they will be dismissed or cause undue burden. As I build relationships, others learn about my way of being in the world as a Jewish person with a disability.

Because each person who has intersecting identities of being Jewish and a person with a disability is different, reaching out to, and hearing the voices of, a wide range of disability experiences is critical in allowing us to build our own internal capacity for understanding and offering support. Raising them up and bringing them into leadership positions is the way we disrupt the structures that keep people with disabilities outside of change-making roles.

I am deeply appreciative of the Jewish spaces that allow folks to be fully present without leaving one or more of their identities at the door. If institutional efforts can be combined with genuine relationship-building across difference, we are endless in our ability to repair and rebuild the world such that we can all feel the comfort and joy of inclusive communities, and may sing freely and with confidence:

“Hinei ma tov u’ma na’im shevet achim gam yachad.” –

“Behold how good and pleasant it is when all people live together as one.” (Psalm 133)

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Kayla Neumeyer (she/her/hers) is a queer, Jewish woman with a disability who works as a speech-language pathologist by day and Jewish community organizer by night. She enjoys DIY projects, crafting, raising plants, and spending time with friends and family.

November 18, 2018





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