A Simple Question

(credit: Lisa M. Collard)

(credit: Lisa M. Collard)

By: Susan Glairon

The woman does not want to call attention to herself. It’s Friday night. Shabbat services. Another week of screaming tantrums are over. She is looking for a break.

As she silently prays, one of her sons rocks back and forth. Quiet pauses between verses become filled with the thumps of a small back rhythmically hitting a chair. A stranger angrily mouths “Quiet!” to the young mother. The woman moves to the back of the sanctuary, taking her two young children with her, and stands and prays. The same son twirls around. Another congregant asks her to leave.

But there are things that the congregation doesn’t know. The young single mom has two children with autism. She has come here for community. For support. For five minutes of conversation during an oneg (Shabbat celebration).

There are other things they don’t know. They don’t know her or her children. They don’t know that she spent most of her life living in Israel. They don’t know all the gifts autism has taught her, such as patience and fortitude. They don’t know how bright and inquisitive her sons are.

The weary mom doesn’t tell them these things. She just leaves. Similar to when strangers in stores stare when her children melt down, she feels rejected, this time in a place she thought she’d find community. Still, she is an “autism mom,” someone who has fought for her kids since the day they were diagnosed. She does not give up easily.

The following week she tries a second synagogue, but the response is similar.

The third week the mother visits a church, where the congregants know she is Jewish, but they consistently give her the support she craves. When either of her sons fidgets during services, church members offer to help. They invite her to dinners and even give the financially struggling mom grocery gift cards.

The story is true- but the point is not that one “religion” or “house of worship” does a better job than the other. As a lay leader in Jewish inclusion, I talk a lot with parents and have attended leadership institutes and Jewish disability meetings where the lack of inclusion is often discussed. Nationwide, those with disabilities and their families often feel left out of their Jewish communities. Simply put: Synagogues and Jewish communities could be doing a much better job at fostering an inclusive environment.

Elaine Hall (center) speaks with Rabbi Ruthie Gelfarb (R) of Congregation Har HaShem, while left to right Rabbi Mark Glickman, HHS interim rabbi, Susan Glairon and Yonatan Malin listen.

Elaine Hall (center) speaks with Rabbi Ruthie Gelfarb (R) of Congregation Har
HaShem, while left to right Rabbi Mark Glickman, HHS interim rabbi, Susan Glairon and Yonatan Malin listen.

Most congregations embrace the words “tikkun olam (healing the world).” They feed the homeless. They fill the freezers of congregants who have lost loved ones. They participate in blood drives. Yet they often have no contact with families who spend their days trying to find the best therapies for their children and their nights worrying what will happen to their adult children after they can no longer care for them. Some of these parents care for adults who cannot toilet independently or who have feeding tubes and oxygen. Many have spent their retirement accounts on therapies. Often their spirits are weary from the physical and emotional needs of extra caretaking and from fending off insensitive comments from a world that blames the actions of all children on the parents.

These parents would love a tender word, a warm meal brought to their home, and ways for themselves and their loved ones to participate in Jewish life. Inclusion is not about expensive equipment or programs. It is about awareness and acceptance. It’s not about tolerance; it’s about embracing these families.

There is no way the synagogue congregants could have known the woman’s story without her telling it. But no one knows a person’s story the first time they meet. Inclusion starts with asking, “How can I help?”

Susan Glairon works to improve inclusivity of people with disabilities in her Boulder, Colo. Jewish community. Susan received a #MakeItHappen micro grant (from the Schusterman Foundation in partnership with the Ruderman Family Founation) and worked with two reform and conservative congregations to bring Elaine Hall to Boulder for three speaking engagements. Visit Susan’s Web sites at www.inclusionconnections.com and www.jewishinclusion.org  Susan is the mother of 22-year-old son, who has autism and a 19-year-old daughter, who has dyslexia. Both her son and daughter were bar mitzvahed and confirmed.

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4 Comments

Filed under Disabilities rights

4 responses to “A Simple Question

  1. Galya

    Thank you for sharing, I hope this reaches many people in many congregations. We absolutely must do more to be attentive to the needs of others.

  2. Lisa Handelman

    Thanks for sharing – I read this and other articles that give anecdotal accounts about not being included in the Jewish community but have never seen any study that supports this with data. I feel very strongly that this is an important issue and believe fully in the message of these personal accounts. I am wondering if anyone knows if there is data out there to help me convince others.

  3. Faye

    I wish that mother could have come into my shul. with all our problems, we have done not too badly in embracing some kids and some adults with disabilities.
    I think you don’t need a study to prove that many shuls are formal and intolerant of unusual behaviour. but some of us have stepped beyond the formality to ask how we can help.

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