My talk at Shul for Jewish Disability Awareness and Inclusion Month
Shabbat Shalom.
Gavin and I were the true “Wandering Jews.” We met on a street corner in Jerusalem, got married in South Africa, and lived in the Outback of New Zealand and Australia. We then won the Green Card lottery, our ticket to live in the U.S.
We moved to Manhattan in 2000. We had a great life. We had an open home, good jobs, and two cute kids. People would have called us pillars of the community. The singles who joined our events would say, “When I grow up, I want to be just like the Samuels.”
On February 25, Caila was born.
On day 3 of her life, a doctor said the words that would change our lives:
“Did you do genetic testing?”
Six weeks before Caila was born, I had a feeling something was wrong.
The OB/GYN could not understand my anxiety. To Gavin, as a doctor, there were no tests to back up my intuition.
As they wheeled me in for a cesarean, I prayed, not for a healthy child, but I prayed, “Please, God, give me the strength to deal with whatever comes my way.”
Yes, we had done some tests, but we had declined an amniocentesis. After all, we would never abort anyway!
I was told I had the same risk factor for having a baby with Down syndrome as a 21-year-old.
I knew what Down syndrome was—I have a cousin with Down syndrome.
I was terrified!
I was scared to look at the Down syndrome kids who came to my shul.
Now, this was my reality!
How was I going to be the hostess extraordinaire? How was I going to travel the world?
I was highly ambitious, and I had not yet made it to the front page of Forbes or Fortune magazine.
What would this mean for my marriage? For my other kids?
I went to the bathroom and looked in the mirror.
I had an honest conversation with myself.
I asked myself: What did God want from me?
What kind of mom and wife would I be?
What legacy would I leave for my kids?
Then the quote from the late Rabbi Jonathan Sacks came to mind:
“We begin to achieve greatness when we pass our values onto the next generation.” I knew I had a mission.
Walking out of the hospital when they checked our band to make sure we weren’t stealing the baby, Gavin joked that they should brand “activist” on our foreheads. Little did we know that we would soon be fighting for Caila’s right to exist!
On day 5 of her life, our religious neighbor asked in shock, while I was holding the baby, “What, you didn’t do an amniocentesis and abort?” I guess not…
We soon learned that people would say many stupid things. Gavin wanted to have a T-shirt made that said, “I have an extra copy of chromosome 21 that accounts for my intellectual disability. What’s your excuse?”
At age 2, Caila was locked out of a Jewish day school. A school in the neighborhood that her siblings went to!
Every day of Caila’s life, Gavin and I have fought for the world to see her as equal. Our fight continued in Israel. Each day we put on the boxing gloves, fighting for her worth!
Every Torah portion has a message about disability. My friend Jason Lieberman shares his insights each week.
This week we read:
“They had departed from Rephidim and had arrived in the Sinai Desert, camping (vayahanu) in the wilderness.”
Usually, the tribes camped separately, each according to their tribal strengths and differences. However, their encampment at Har Sinai is described in the singular instead of the usual plural. “Israel camped” (vayehan), which is singular, opposite the mountain. This means that everyone camped together. As they prepared to receive the Torah, they were all equal in their responsibility to receive the Torah.
When the Jewish people arrived at Mt. Sinai, they had achieved a remarkable degree of unity that they had not shown before. They were “כיש אחד בלב אחד” (like one person with one heart). Hence, the shift from the plural to the singular form of speech.
It’s clear that the giving of the Torah was to the Jewish people who, unified, emerged as a distinct metaphysical entity.
The Torah was not given to 600,000 individuals, but to all Jewish people as one single entity!
We may see the Torah differently or understand it differently, and it might present different responsibilities to different people, but the Torah was presented to all of us together as one inclusive people. Every Jew, for all time, has the Torah as his possession. The Torah belongs to all of us, regardless of whether or not we have a diagnosis or disability, in every generation!
At Mount Sinai, G‑d gathered every man, woman, and child of the Jewish faith and said, “I am the L‑rd your G‑d who brought you out of the land of Egypt.”
The Mishnah teaches that, “In every generation, a person is obligated to regard himself as if he had come out of Egypt.”
The Hebrew word for Egypt—“Mitzrayim”—also means boundaries and limitations. We all have our own constraints, things that block us, box us in, or chain us down. These limitations can be externally imposed or self-created.
A study just came out this week that disproves these limitations.
At Bar Ilan University, the first cohort of 6 students with intellectual disabilities completed bachelor’s degrees in social science. A study of their IQs showed they increased during their time studying.
Every day, we wish for a world where Caila’s differences are as unremarkable as her brown hair or brown eyes!
Today, I challenge each one of you to leave your judgment and prejudice behind, to leave your own Mitzrayim, and to assume that Caila can—and maybe she just will!
Shabbat Shalom.