Quick note: my sibling is disabled, and has a religious identity

Religion is a sticky subject, especially where disability is concerned, so I’m hesitant to mention it here. However, being Jewish is an important part of Lily’s life, and I want to introduce that here, since some of the stories I have in draft form or that are sure to arise in the future will hinge on what religion means to Lily.

I decided that I wasn’t going to celebrate Halloween when I was in the third grade. My teacher that year had units on many major or popular holidays, in which we studied the origins and traditions of celebrations from diverse cultures. I decided that the holiday wasn’t part of my tradition, and I already had a Jewish costume holiday; the candy-loving part of me realized that whatever we didn’t hand out to trick-or-treaters came to me. Even if my Jewish identity isn’t entirely mainstream, for any of the streams of Judaism, it’s very important to me, and I was clearly aware at an early age that it distinguished me from the culture around me and that I was okay with that. While I’m not sure whether Lily is capable of the sophisticated thought that can be important to claiming religious identities, I know that she, too, values being Jewish, even if only as part of our family life and traditions.

Lily loves singing and music. She’s always loved singing songs for the different holidays, be they in English, Yiddish, or Hebrew. Music was her favorite part of Sunday school when we were members of a synagogue that had a special ed Sunday school class that she could attend. When she was sighted, she loved the candles that are lighted for Friday nights (to help usher in the Sabbath) and for Chanukah. (She still loves being involved in candlelighting, despite being blind, and one of us family members will help her light candles sometimes.) We generally follow the Jewish dietary laws, avoiding pork and shellfish and not mixing dairy products with meat. Lily helps with holiday food preparation, knows the blessings for those foods and a good many other observances. She loves helping to guide the festivities for Passover.

So you can imagine how funny, and disheartening, it was to have her come home from junior high school one day with a project based on her story: that she had been baking Christmas cookies with my grandmother. You know, the Jewish grandmother who lived nearly 500 miles away and who hadn’t been visiting. It was at this point that my parents told Lily’s teachers that we do not, in fact, celebrate Christmas. Amusingly, said teachers then said it was now clear why Lily had done so very well with the assignments when they had been discussing Chanukah. They were gracious enough to invite the family to come in and support Lily in doing a small lesson on the holiday for the other students.

As we prepare to begin a new year in the Jewish calendar, my sister is on my mind. I’m glad that we are able to support her, and that her current staff are so understanding, about all of who she is. So often we hear about how PWD get treated as their disabilities and not people, which I’m sure has the potential to be that much worse for those who are semi- or non-verbal. I’m really glad that Lily can enjoy celebrating her holidays.


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