Inside and outside the blue lines

I find it ironic that it was hard for me to feel that I had anything to contribute for Jewish Disability Awareness and Inclusion Month (JDAIM), every year in February, the month that just ended.

Most people who know me know that I am very vocal about accessibility, which makes sense, because it impacts me directly: If I can’t get into a space with my motorized scooter, then not everybody can participate.

If you Google “disabled Jew” (take a minute out from reading this … I’ll wait…), you’ll *mostly* find images of Jewish people who have intellectual disabilities. But that is not me.

Part of building awareness is helping people understand that there are many different types of disabilities. In my case, as my three siblings and I advanced into our teenage years, we each developed an extremely rare physical disability that causes muscle deterioration and has successively robbed us each of our ability to walk.

Before I developed this disease, I was able to accomplish quite a bit:

I earned a second degree black belt in Tae Kwon Do.

I earned a masters degree in Bible.

I received a young leadership award from my shul (synagogue).

I taught shiurim (classes) on various Torah topics.

I was invited to join the board of my shul.

Even now, I work at a wonderful bank as a technical analyst and technical writer.

I was a guest speaker at the National Advisory Child Health and Human Development (NACHHD) Council.

I spoke at this conference of medical professionals to help doctors, researchers, and drug manufacturers understand how vital the potential development and manufacturing of a medication to treat my condition would be to my life. How significantly it could impact me and my siblings, and change our lives for the better.

Still, many people only see me as the woman in the chair.

For example, when I have tried to date: I know that I am a young, single woman in her prime. I am smart. I am pretty. I am a hard worker. I am loyal. I am dedicated. And yet, people only want to set me up with other people who also have disabilities. 

Because why waste a “good guy” on someone who has a disability? People want me to date within the blue lines of the handicapped-accessible parking space. They think that my degenerating muscles make me unworthy of someone whose muscles are healthy and strong.

People did not want to hire me to teach because of my disability. They did not say it… that is illegal. Instead, they would say things like, “You’re just not the right fit,” or “We’re looking for something different.” I know that code switching. It did not matter that I have a masters degree in Bible, the subject I wanted to teach.

Little did those Jewish day school principals and administrators remember that our greatest teacher, Moses, had a speech impairment and he spoke directly with the Ribono Shel Olam, Master of the Universe, God, and transmitted God’s Torah to the masses of the Jewish people.

People’s insensitivity extends to asking me insensitive questions regarding my condition. I take it on the chin. They are uneducated, unaware, I think to myself, so I subtly correct their language.

I encourage children to ask me when they have questions about my condition, or my scooter. I answer their questions until they are satisfied with their understanding — because I so often experience firsthand how important it is to take such opportunities to educate.

Their parents tend to cry at these exchanges. I softly tell them that this is the only way to change the world. So that their kids will understand the one thing that we, the people of this disabled community, want everyone to know: We are human, just like you.

We have thoughts, feelings, hopes, and dreams.

We have the courage, conviction, drive, and determination. We have the tenacity, and the will to make the world a better place.

For us, and for everyone else.

You just have to let us try.

You just have to let us in.

To me, that’s what accessibility and inclusion are all about.