The Intersection of Judaism and Disability — Embracing a Life Filled with Endless Questions and Endless Communities

The Intersection of Judaism and Disability —
Embracing a Life Filled with Endless Questions and Endless Communities
by Mirit Morrissa Bershad Shapiro

When I was little, my sisters came up with a rule for me on Pesach. I was barred from asking more than 5 questions at the seder, otherwise, they said, I would keep the whole table up until 3am (which might have happened more than twice). The habit of asking “too many” questions and engaging in “too many” discussions carried over to all areas of my life — from judaics class, to the dinner table.

When I was 10 years old, my life was complicated when I developed a condition called Complex Regional Pain Syndrome, or CRPS. I was submerged into the world of having chronic illness. Very suddenly, I had to shift my priorities. It was now my job to find out what this condition meant, work hard to fight it, and familiarize myself with the language and landscape of neuroscience. Mostly, I had to learn to advocate for myself.

There were so many people in my Jewish community who responded to my situation with warmth. Many of my former teachers and Rabbi’s made time for me. But slowly I started to get pulled away from my Jewish life, as illness took over my body. Though some in my community had reached out initially, there was a sense of fundamental inaccessibility to the Jewish spaces that had once felt so welcoming.

When I was diagnosed, I had just started fifth grade at a school I had been attending since kindergarten. My class was small, the same 18 kids, all those years. I didn’t have the best accommodations there, or the best response from my somewhat sver Hebrew teacher. The school had previously had a difficult time accommodating several other students with disabilities. Ultimately I was taken out of the classroom and homeschooled for most of that first year, as they didn’t have an elevator to my second floor classroom, not to mention the lack of an accessible building entrance.

We figured it was the smallest Jewish school in the DC area, and that my local Jewish middle school would be bigger, with more resources. They might be more capable and willing to support me. We were wrong. Once we sat down with my potential guidance counselor and talked it out, it became clear that there wasn’t a way forward which would meet my needs. This was when I moved to public school.

The rest of my life was completely shaken up too. I stopped going to shabbat services. I went from dancing to physical therapy. I lost nearly 100% of my social life.

Most importantly, I struggled with my family, who I was once inseparably close with. Many members of my family didn’t believe, or didn’t want to believe, my diagnosis. They sometimes actively refused to accommodate my needs. If the vacation they wanted to take wasn’t accessible, I got left behind instead of accomodated. Whenever I had to go to the doctor, I would have to beg for a note for school or a ride to the appointment. I was told not to talk about my condition, or my experience in the hospital. They would roll their eyes when I’d cringe at a large bump in the car.

While I was struggling to adjust and cope through each day, I was restricted more and more from discussing my pain at home.

All this silence and lack of accommodation didn’t make sense to me. The stronghold of the Jewish community had always felt protective and comforting.

Asking questions and valuing discussion in particular, had always felt inherently Jewish to me — and these values were taught and modeled to me my whole life, by my family and my Jewish school! I didn’t, and still don’t, understand how they couldn’t see the Jewishness in accommodating, respecting, and listening to people with disabilities.

There certainly was a lack of listening. In my school environment, in my family, and definitely in the doctor’s office.

I was facing a war every time I walked into an exam room. There isn’t much research about my condition, and many doctors haven’t even heard of it — especially in 2005, when this journey began. But most agree that it’s incurable, especially after 13 years. Doctors, who try their hardest to cure their patients, feel uncomfortable with cases like mine. They bring their discomfort into the office, and often say rather offensive things to me. It had become my job to push past this to ask for what I need. It was impossible to keep going at this, nearly alone.

But here’s the thing — I soon learned that I wasn’t isolated. I was surrounded by communities of kid patients. I gained an new identity when I became disabled. With that identity came countless new friends and allies.Together, in hospital wards and facebook groups, we spent time looking for answers, sharing tips and links to new research. Other conversations were rants; venting, analytical, and occasionally cyclical. We kept each other going during late night hangouts in the hospital, after our parents left and the machines kept beeping us awake. We also played a lot of wheelchair basketball and air hockey.

As the years went by, it was as though we were sitting shiva with each other for the people we once were, the things we could once do. Meanwhile, we lifted each other up, encouraging hope, reinforcing strength, as we searched, and kept searching, for the next step. It was clear that I wasn’t alone in this fight for a voice in my medical care.

Many times we shared conversations about value. I didn’t understand my value, or that I had value at all, after I got sick. It felt like, since I wasn’t allowed to talk about it in adult spaces, this new piece of myself wasn’t valuable to my family, my teachers, or my doctors. But I knew that each one of my friends with disabilities had massive amounts of value! Their disabilities didn’t diminish their strengths, but made all of their attributes diverse and their perspectives unique. Though, like me, they sometimes couldn’t see it.

In Parsha Ki Tisa, Hashem requires us to take a count of all the children of Israel. Rather than counting each person, all are required to donate exactly one half shekel. By insisting that each person, regardless of wealth, donate the same amount, the Torah is demonstrating that each person is of equal value to the community. There is no difference based on perceived ability. Even further, by choosing a marker of a half shekel rather than a full shekel, the Torah suggests that each one of us can only reach our full potential when we are included communally with others.

I have seen this in practice in so many parts of the Jewish community, just as I have in the disability community. The way we are taught to see the value in every single person. The way we are taught to have compassion. The way we value resilience and encourage it. The way we can mourn and celebrate freely, as a community.

When we remember these values, when we recognize and raise up the inherent value in others, our communities become stronger. When we see people with disabilities as significant, just as significant as everyone else, each of your children learns that they have a place in their home and their synagogue, no matter what happens to them as they grow up. They will be more compassionate towards others as they go through life. They will see the world reflected in their community.

It’s an opportunity to enrich all of us and all of our communities. Every one of us has the chance to make this space welcome for people who may not have felt welcome before. To be honest, so many of you in the CBI community have already done this for me.

The first time I came to CBI, Maureen introduced herself to me. She is the lifelong education coordinator at the shul, and she is absolutely wonderful. The very first time we spoke, she asked me how the synagogue measured up in terms of accessibility. I almost passed up the opportunity, not wanting to complain, having been very warmly welcomed into the space. But she, very kindly, insisted that she wanted to know so she could make it better.

A year down the line and I know that conversation wasn’t just talk. About a month ago she told me my suggestion of installing automated doors is being discussed and hopefully planned soon. Not only that, but she and Rabbi Weintraub have brought me into their classrooms and onto the Bima, giving me this platform to share. Inviting teachers and speakers with disabilities into programming is vital to inclusion.

There are other ways of being inclusive too. Making as many events as accessible as possible. Or even, questioning your own perception on accessibility. There might be problems you cannot see, or you may not understand. I can’t count how many people have thought their space was accessible until they were told their doorway is too narrow, or their bathroom safety bars installed incorrectly.

I believe “accessible” can mean many things in a community:

How can you help make shabbat peaceful and meaningful to someone who can’t attend services?

How do you keep a congregant engaged in the community, when they’ve been in the hospital more than at shul?

How do you respond to a student who cannot learn from traditional methods?

“Accessibile” is the state of mind you achieve when you see each person with disabilities as a full human being, and address their wants and needs as such.

If you want to make a difference with the Jewish disabled community, really listen to us and trust the value in our words.

Daven for the healing of the ones you love.

But first, ask them what you can do.

Respect their limitations. Meet them where they’re at. Believe them.

It is clear to me that my being Jewish has made me a better patient. And I absolutely believe, through my experience of having disabilities, I am becoming better at being Jewish.

I ask each of you to breathe accessibility into your Judaism. Look at your relationship with accessibility and question if it reflects the most beautiful of ideals that Judaism has passed down from generation, to generation. L’dor v’dor.