Disability awareness: The spirit is with us

Disability awareness: The spirit is with us

MetroWest ABLE (Access, Belonging and Life Enrichment for People and Families with Special Needs) is the community’s network of agencies and community leaders that serve and advocate for individuals with special needs and their families. MetroWest ABLE is making connections within our Jewish community to raise awareness and support meaningful inclusion of people with special needs and their families in every aspect of Jewish life in MetroWest. MetroWest ABLE is funded by the UJA Campaign, the Linda Bunis Haller Foundation, and the Joyce and Leonard Kulick Fund for Special Needs. For more information, please call Rebecca Wanatick, community coordinator, at 973-929-3129 or rwanatick@jfedgmw.org or visit metrowestABLE.org.

We’ve got spirit, yes we do!
We’ve got spirit, how about you?!

This chant was a staple of my childhood camp experience. Instituted to show off our cabin’s ruah, we were encouraged to yell it out “loud and proud” while jumping, dancing, and being as physically exuberant as possible.

As a professional chaplain, I look back at this cheer and wonder how proving the robustness of spirit came to be associated with the ability to make noise and movement. This question is especially challenging to me as I think about the patients and families I serve who live with physical and developmental disabilities.

I remember the first time I met the woman I’ll call Helen. Helen was 85 years old with end stage Alzheimer’s disease. She required assistance for all her routine daily activities and was no longer able to speak. She lived in a nursing home and spent most of her time in her wheelchair. Often when you spoke to her, she would give no indication that she knew you were there, continuing to stare at the blanket in her lap.

Unable to communicate with Helen verbally, I sat beside her and took her hand. And while her face didn’t change, I felt her squeeze my hand in return. She held it fast, with a surprisingly strong grip. And with that smallest of gestures, Helen affirmed her spirit. That first day we sat together, silently holding hands for 15 minutes, then Helen let go.

Helen and I repeated this ritual every week for four months, until she died. Sometimes our visit would be longer than that first 15 minutes. Sometimes she would drop my hand after just a minute or two. Over time, her grasp became weaker. And in the end I was the one who had to choose the moment of letting go.

Helen’s spirit was more hidden than that of my young camp peers, but it was no less strong. She voiced it silently — her voice was small and still — a kol demama daka. While I can’t speak for her and say what our weekly visits meant to her, I can say that for those minutes she was not alone. For those minutes she was recognized as a person with the dignity to choose to reach out to another, or not. For those minutes she had the opportunity to express her desire to be with another person, and to establish a connection to the world around her.

As our community recently marked Jewish Disability Awareness Month, we need to recognize that being accessible involves so much more than adding ramps, adaptive hearing technology, and appropriate restroom facilities. While these are all wonderful and praiseworthy initiatives, we can also take this opportunity to adopt a philosophy of inclusion, the desire to seek and honor the spirit of everyone we meet. Whether a person can proclaim his or her ruah with a boisterous cheer, or if we need to be more sensitive to the kol demama daka, when we ask “we’ve got spirit, how about you,” we want to be truly prepared to hear the answer. It is our opportunity to extend and accept a sincere invitation, to create a relationship of meaning and purpose with our fellow human beings. Throughout this month and into the rest of the year may we all open our hearts and hands to honor the spirit of everyone we meet.

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