Wednesday, March 1, 2017
My cousin Allen was different. When I was a child he was this fabulous grown up who like to play board games with us - Sorry was his favorite - or go for walks collecting acorns, telling corny jokes, or telling us stories about his summers at the bungalow or at camp. He wasn't different to us then. He was fun and cool and better than all the other grown ups who just sat around drinking coffee or preparing large amounts of food in small kitchens for our big family gatherings.
And then I got to an age where I realized Allen was different. I don't remember who told me, but at about twelve years old I didn't want to play Sorry anymore, but Allen still did. I didn't want to hear the corny jokes, but Allen wanted to still tell them. I was more interested in listening in on the adult conversations or talking to Marian and Alice about boys. I remember seeing the sadness in Allen's eyes when I said "no thanks" to a game of Sorry. I remember feeling confused about the guilt and sadness I felt in reaction to that interaction.
When I decided that I wanted to write about Allen, I asked his sister Bonnie if Allen had a diagnosis. She said " When Allen was younger, we said retarded which was a clinical term, not stigmatized." She went on to say "Now we say developmental (and/or) intellectual disabilities". I realize that it doesn't matter the words that people would use to describe Allen. I grew up knowing that he was inspiring.
Allen is my father's first cousin. My father was nine years old when Allen was born. He went to school, had his Bar Mitzvah, graduated from high school. During the summers he spent time at a sleep away camp for physically and intellectually disabled youth. Soon after high school Allen began working for McGraw Hill, in the mail room. He worked for them for forty years. Forty years! He loved getting up in the morning and having a purpose, a place to go, where his work and commitment were appreciated and respected.
Allen lived in a semi-independent community (a YAI community), in an apartment with other people with similar abilities, supervised by a person from YAI. It was my impression that he always had this very full life, of family and friends, work and travel. Lots and lots of travel. He went to exotic locations like Morocco, St. Maarten, the Canary Islands, Italy and so much more - all with his friends and a counselor. He saw more of the world than I ever will, and he relished this part of his life and the independence that allowed him to do these things.
My memories of Allen always include arms spread wide open in anticipation of hugging you at least forty feet before you got to him. A big smile on his face as he hugged you, always reminding me that he was my favorite cousin. Birthday cards at least one week before my birthday as a child and a phone call or message from him on my birthday and all the Jewish holidays as an adult. Allen was the keeper of all family connections. He could remember who was related to who and their children, and their children's children. He liked to tell stories about his childhood summers spent in the bungalow colony with his parents and the extended family. He remembered the names of all his friends from sleep away camp, and could often fill us in on where they are now. Allen loved going to the movies and watching TV so we often talked about these things when we got together. He was an advocate for the intellectually disabled, so when the movie Tropic Thunder came out in 2008 using the word "retard" or the "R word" in a very derogatory way, Allen was right there in the trenches fighting against the injustice. His dedication to this cause made me braver and more likely to speak up for what I believe in as well.
Allen was at every family gathering. He prided himself in the fact that he was one of only two children that were invited to my parents wedding. When he couldn't get a car ride from his apartment in the city to my childhood home in Roosevelt, he would take the bus. He was going to be there hell or high water. He loved my kids and the kids of my cousins as much as he loved us and he was at all the Bar/Bat Mitzvahs, eating and dancing, hugging and taking pictures, enveloped in all the love of the day. Adam always commented that Allen was the only person who he knew who didn't have any enemies. Allen was pure love.
It was April of 2014 when Allen passed away. In his sleep. Peacefully. The TV on. He was only 61 year old. He had some heart trouble a few years back. I still feel like this important piece of our family puzzle is missing. I looked around the room for him this past day after Thanksgiving when we were all gathered together. He should have been there.
So much of who Allen was inspires me. In preparation for writing this blog piece his sister/my cousin Bonnie sent me words that had been written about Allen from a variety of people in his life. One of the pieces was written by Sarah Baier, Allen's Leisure Trax counselor who accompanied him on his travels around the world. She recalled Allen saying “Sometimes I need help. Sometimes I don’t. I’m not embarrassed to ask for help when I need it, you know what I mean?” These words are so poignant and ring so true to where I am in my life right now. Thank you Allen. I needed that.
If you would like to learn more about Allen and his life achievements, please view the link below: