“Your soul is pure – it has already earned its place in heaven,” the mother said, and then followed her words with a long, still hug – two souls grasping on to each other – not wanting to let go.
A powerful, meaningful moment for me follows Inclusion Shabbat at my synagogue, Congregation Beth Yeshurun, during Jewish Disability Awareness Month.
Wrapped in that embrace were all the hopes, aspirations and dreams of a mother for her special needs child, Sarah, who is now an adult living in a state school over 76 miles away from her parents and from her Jewish community.
When this mother hugged me and sung such stirring praise of my soul, she was transmitting her greatest remaining desire – that one day, Sarah could live closer to her in an appropriate Jewish residential program. Spending Shabbat together in synagogue each week would be a normal occurrence, not one where the Inclusion Committee specially invited the Jewish state school residents to be in attendance for its annual service. Sarah knows one prayer well, the Shecheyanu, and her mom attempted to coax Sarah into saying it for me.
It moved me because just earlier in the day, I had spoken to a multi-cultural class of Ph.D. nursing students about the Jewish community. I tried to convey to the nurses that we, the Jewish community, are responsible for the beautiful, frail and often fragile souls of Jewish individuals with disabilities. Sarah’s ability to say the Shecheyanu prayer affirmed what I taught the nurses just hours before Shabbat. At Sarah’s core is her deep internal connection with G-d.
In that long embrace, Sarah’s mother was transmitting her greatest remaining fear to me, as well. She worries that one day she will no longer be able to travel the distance necessary to see Sarah due to the natural effects of aging. Her heart aches at the thought that as she and her husband age, they may not be able to make the trip to see Sarah.
That fear is often expressed by parents as “what will happen to my child when I die?” I thought about the extra mental anguish of a parent who physically can no longer travel and care for their child but whose mind is completely present. How much more does a parent have to suffer before we respond as a compassionate, caring Jewish community? When can we say we are our brother’s keeper?
That moment I shared with Sarah’s mother made me feel just a little bit more determined to find a solution for the long-term residential needs of Jewish adults with disabilities in all of our communities.
The needs of the families and the individuals who have a disability are vast and diverse. It is impossible for any one community to provide services appropriate for all.
What if we looked at the residential needs of our Jewish community from a national perspective? Imagine that an online guide existed so that anyone searching for quality, Jewish programs could access a searchable guide of residential programs that already exist in each of our communities. Imagine that a parent could call a toll-free number and reach a person who knows about all the Jewish residential programs in the United States. Imagine regional Jewish residential hubs where no parent or sibling must fly more than one hour to be with their adult child or sibling. Imagine a string of residential programs throughout the country responsible for the beautiful Jewish souls in their keeping.
Linda L. Burger, CEO of Jewish Family Service, Houston, is responsible for oversight and development of the JFS Alexander Institute for Inclusion. Linda serves as a member of the boards of the Association of Jewish Family and Children’s Agencies and the International Association of Jewish Vocational Service. She is immediate past treasurer of the Network of Behavioral Health Providers in Houston. Linda can be reached at firstname.lastname@example.org