by Shelley Christiansen
In parashat Bo, “Moses held out his arm toward the sky and thick darkness descended upon all the land of Egypt for three days. People could not see one another. For three days no one could move about; but all the Israelites enjoyed light in their dwellings.”
God hardened Pharoah’s heart again leading up to the final plague. While the light glowed for the Israelites, the Egyptians were bound by darkness. It must have been terrifying to live in the thick, enveloping darkness.
Imagine living in another kind of darkness; darkness where the light of God never shines. You want to be enveloped, not in darkness anymore, but in the light of Torah, of community and of God. What do you hold dear as a member of your community? Imagine how your life would be different if you were isolated from it.
I visited a synagogue during Jewish Disability Awareness Month where every word uttered on the bimah was displayed on a large screen in the front of the sanctuary. The congregation invited Jewish men and women with disabilities from a nearby residential center to attend. My hosts and I sat in the back, right next to these visitors.
The Inclusion Committee chair spoke, asking committee members to stand – about 25 of them. She cited everything the committee had done to increase welcome and accessibility.
But from my seat, I didn’t observe much hachnassat orchim, that hallmark Jewish value of welcoming the stranger. These visitors were invisible to the congregation. As the chair spoke, many of made noises; people stared.
Then the cantor sang.
A woman sitting nearby was one of the special guests. The agitation of a moment earlier was replaced by a calmness reflected in the serenity of her face. We reached for each other’s hands, and as we linked them, I knew I was experiencing someone’s emergence from that all enveloping darkness of isolation. In this moment, someone was experiencing the warmth of God’s light – and it was awesome.
Still, there is darkness that envelopes many people with disabilities and their families. We must open our arms even wider to embrace and include them.
As Moses said in parashat Bo, “We will all go, regardless of social station; we will go with our sons and daughters, our flocks and herds.”
My husband and I have three sons, Aaron, Jacob, and Zac. Jacob was diagnosed with ADHD at 8 and with Asperger syndrome at 15. Raising a kid with a disability was not in myMother’s Manual. I spent hours fielding the “Mrs. Christensen?” calls from assistant principals and teachers, who catalogued everything Jake did wrong – and I learned special education law, thus making me a notoriously informed parent.
Now, Jacob is soon graduating from the University of Minnesota majoring in Sociology. He participated in a Taglit-Birthright Israel trip for young adults with Asperger syndrome. He’s worked part time in high school and college; he speaks at conferences about Asperger syndrome; he has friends. One place where Jacob’s disability didn’t matter was in our synagogue religious school. He was engaged in learning, especially Jewish values around social justice. Jake celebrated becoming a bar mitzvah and was confirmed with the same kids he’d known since kindergarten.
What do we learn from these different experiences – the congregation that extols inclusion but doesn’t welcome everyone sitting in the sanctuary, and the congregation that naturally supported a young man on his Jewish journey?
The hallmarks of a good life – opportunities to work, live, love, learn, play and worship – are growing in many Jewish communities. Including people with disabilities throughout the lifespan is becoming less a dream and more a reality.
There are basic philosophies about inclusion that guide us on the journey.
- We don’t do things for people with disabilities. We do things with them. We must build relationships, respect their humanity and think of them as individuals with hopes and dreams.
- No one does this alone. Pirke Avot teaches, “… it is not up to us to complete the task, but neither are we ever free to desist from trying. People with disabilities and families must participate in all decision making about their lives. “Nothing About Us Without Us.”
- Inclusion is woven into every activity in the Jewish community. People with disabilities must choose how they wish to participate. Just like anyone else.
The Chassidic master Yehudi HaKadosh said, “Good intentions alone not accompanied by action are without value. The main thing is the action, as this is what makes the intention so profound.” It is time to act and end the darkness.