February 27, 2020

Sacred Space, Stigma and Self-Determination

There are times when it is easy to feel the grandeur and majesty of a supreme force, such as when witnessing a vivid, rouge sunset on the southern rim of the Grand Canyon or hearing the cry of a newborn. Feeling the presence of God in a windowless meeting room at a hotel is much harder, yet that was exactly what happened on a recent Saturday morning at the DoubleTree by Hilton in west Los Angeles.

It was the second day of a statewide conference on self-determination for regional center consumers who have intellectual and developmental disabilities. Judy Mark, the prime mover and parent activist behind California’s new self-determination program and a long-time friend from our BBYO teenage days, organized the conference. She asked me to moderate a breakout discussion on “Making the World a Better Place: Volunteerism, Worship, Voting and Community Participation.” The panelists included an adult with autism, a parent of a teenager with autism, adult siblings and other relatives.

Mulugeta Tadele, father of a teenager named Emmanuel, spoke about how his family had been active with the Ethiopian Orthodox Tewahedo church in downtown Los Angeles for many years, but after his son’s diagnosis with autism, the family withdrew from the church. When his young son disobeyed some of the rules by touching certain ritual items and making noise, the clergy at the time asked that he be removed from the sanctuary.

A few years later, Tadele and a few other parents spoke to their new head clergy, known as a high priest. Drawing on texts from the New Testament, the high priest agreed that the children with special needs should be welcomed and a classroom for the “angels,” as they were called, was set up on Sunday mornings. At first, this classroom was located far from the main sanctuary and few congregants knew it existed. Over time, the children learned the prayers, songs and drumming that are part of the church’s weekly liturgy, and eventually were invited to join in the main service. Now the “angels” are included in every service in the main sanctuary.

Kishan Sreedhar talked about a nonprofit called Pragnya (a Sanskrit term that means “awareness, awakening”) he and his sister, Kavita Sreedhar, who has a child with autism, created. They host a local radio show, and have trained a large group of neuro-typical high school and college-age allies who participate in social and recreational activities, and also act as advocates for awareness and inclusion.

The panelists included an adult with autism, a parent of a teenager with autism, adult siblings and other relatives.

When it came time for the Q & A session, a woman in the back said, “It’s not even 10 a.m. and I have already laughed and cried. I am inspired by the people presenting, but in my Vietnamese culture, there is a huge sense of shame around having a child who is different.” 

Another woman said, “In our Chinese culture, the mother is blamed for having a child with special needs. These families end up feeling alone and cut off from the larger family.” 

At that point, I said half-jokingly, “In the Jewish community, everyone expects their kid to get into Harvard, so if your kid isn’t able to excel academically, it’s hard to find a place to fit in.”

The overarching goal of self-determination for children and adults with intellectual/developmental disabilities is to enable them to have a full and meaningful life in the community. The group that Saturday morning tried to square this laudable goal with the reality of ignorance, shame and stigma that still exists in many families, ethnic and religious communities and society at large.

When the workshop ended, a few people lingered, chatted and hugged. We left, resolved to keep working hard to create a more inclusive community, one person at a time. Amen.

Michelle K. Wolf is a special needs parent activist and nonprofit professional. She is the founding executive director of the Jewish Los Angeles Special Needs Trust.