My Disability Awareness
February marks Disability Awareness Month and each year since I have joined this community I see hints of progress. In fact this link shares that even the fashion industry is rethinking the definition of a perfect body. http://www.upworthy.com/i-bet-these-people-never-expected-to-be-mod… Along with People magazine highlighting successful people with DS or shows like Glee having a main character with DS and Nordstrom featuring people with Down syndrome – we know that the world is changing even if ever so slow
Caily was born in February 6 years ago so disability awareness month is also my anniversary of switching my own personal paradigm of understanding “disabled”. I recall seeing the Jewish special needs home bringing people to shul when I was a kid and I was scared of these people. I recall that disabled people existed just not in my world. In fact this simply was not something anyone in my world discussed or thought about. Suddenly I was thrown into this world and it’s amazing how the words “Mrs. Samuels we strongly suspect your daughter has Down’s syndrome” can change your world. Special needs became my reality and it’s also my filter for the world. People, communities and schools are filtered for their openness. Friends are those that care about the challenges my family face. What is possible in life is now defined by assuming the outlier can strive for success not just betting on those that have all the natural assets for success.
Six years on I see our whole family has filtered and reframed our world. My son told me how a kid with special needs asked for a play date and how he felt bad for this kid as other kids at school are so mean to him. He told me that he was friends with the “in” boys and now has decided not to be as they are so nasty to this kid. It’s much easier at age 11 to follow the in crowd and I am sure Meron’s sensitivity is as a result of the filter he has for having a sister with special needs. Last night I was watching Caily with the Chabad Friendship Circle girls and I have always appreciated that they offer a great service to befriend kids with special needs but even more so these teenagers are given a way to re-frame their world and have a different appreciation of all people with all abilities. Caily adores these girls and I realized last night that she gets so much from being in adult company where she tells them what to do. She is always in an adult directed world and I love that 1 hour a week she feels completely in control. I have re-framed this from feeling uncomfortable that my family is a recipient of a “charity” to realizing she gets a special gift that defines Caily’s week.
We have also had to filter which communities truly treat Caily as part of their world and those who just make nice. Chabad of the West Side have always stood out for me as a community with leaders who unequivocally treat every Jew as equal and I have been immensely grateful that Caily has had a home there. Likewise SAR- Caily’s school, was willing to pioneer inclusion of a child with Down syndrome.
Disability awareness month is definitely Samuels’s awareness month and our time to reflect on our growth as a family and to appreciate all the good that we have and the light that Caily has brought to our world. Six years ago I thought that Hashem had given us an unfair test, has chosen the wrong people for this challenge. Six years on, I marvel and the gift that it was – the richness of life and joy that Caila has brought into our lives. She has taught us so much and ultimately made us and here broader community better people and a better place.
Originally published: February 5, 2017