“What is difficult about having Down syndrome?” I asked my 13-year-old daughter, Caila. Without missing a beat, she replied, “That I have to always think fast.” I was impressed with her extraordinary self-insight and how quickly she responded. So naturally I then asked, “What’s good about having Down syndrome?” Again, a quick response, “Nothing!”
Let’s be honest. How many 13-year-olds can internalize challenges and see the positive. In fact, I surveyed my friends and I have not yet found one woman who would ever want to be a teenage girl again.
While I know it is the challenge of every parent to build our children’s self-confidence and self-worth, I also know how relentless the outside world can be. I have only to think of the recent tragedy of the former Miss USA who sadly ended her life. Cheslie Kryst shared her profound insight into the challenge of aging with the world; her words are chilling: she felt she was “running out of time to matter.” Beautiful, intelligent, analytical, generous, and successful – yet her self-worth was measured by the plastic reality of clicks and likes! She was a successful lawyer and beauty queen, yet unbelievably she wrote about her wrinkles and running out of time!
As a Jewish community leader and a disability activist I am always asking myself how to best direct my energy and my organization to effect change. While researching “effecting change” and “big vision” topics, I have seen great initiatives and even more discussion on addressing Israel, anti-Zionism, racism, intermarriage, and antisemitism. The buzz phrase in community discussions is “Inclusive Communities”. Many of our communal organizations welcome a full spectrum of people with open arms, regardless of racial or gender identities, sexual orientations, religious practices or beliefs. Somehow, forgotten are those with different abilities.
My challenge is double that of a typical parent – to build her up so she appreciates her intrinsic value despite her challenges. I want Caila to live the famous quote often attributed to Rabbi Nachman of Breslev: “The day you were born is the day G-d decided that the world could not exist without you.”
This mission extends beyond my daughter: How do we make an impact that can set the world on the path to real change so that people should be able to truly celebrate and appreciate differences? How can Caila one day see her Down syndrome as a natural part of her – just as we see brown hair? How can we remold our society’s mindset to shift the end goal from being the acts of kindness, or another sheltered village, or projects that only further label our kids as “the others”? How do we effect change that does not just superficially add people with all abilities to a mission statement?
My mission is not just to accept the injustices and the challenges – that is not the Jewish way. It is not enough to tell us how far the world has come in this realm: good is not good enough. Like my forefathers before me understood, it’s the dreamers who become leaders.