The winter 2014 issue of our New York City Self Advocacy group's newsletter features a tribute to Tom Dern, our C.O.O. who passed away unexpectedly in December.
"Living, Loving, and Working" were the words printed in black and orange on our T-shirts, as we proudly returned to the yearly "Leadership Summit" at the CUNY Graduate Center recently. Last year, the Self-Advocates presented their Moth Stories, receiving a standing ovation. This year, we were invited by YAI staff who are singers and musicians, and asked to join them in performing the song Innovate: Zimbabwe by Bob Marley. We sang our part of the song proudly: "Brother our rights, our rights, It’s so right! We gon live, We gon love, we gon work, WORK FOR OUR RIGHTS! Innovate!
Afterward we joined a post-event celebration at a nearby pub, all of us sitting enjoying the foods served, saluting every person who helped and guided us, including CEO Stephen Freeman, the band, each other, and our late friend Melvin Palmer. It was a great day to be a self-advocate and a great day for all YAI staff. As Car'Melo would say proudly, "azucar!" Me, I would add "palante" English for "go forward!"
One of my earliest routines I had was getting the mail. For as long as I can remember, I would brave the heat, cold, rain and snow and walk down the path in my front yard just to see what the mailbox held. To my family, my routine of fetching the mail was a normal part of being me: Something I did because I enjoyed it or just because I could. They had no idea of the truth, of why I really got the mail six days a week. They had no idea getting the mail had become routine because I always hoped that, one day, I would open the mailbox, stick my hand inside and pull out an invitation addressed to me and not to my sister.
Almost two and a half decades later, I'm still the one getting the mail every day. Now a days though, I'm doing it because I enjoy it or just because I can, and not because I'm still hoping that SOMEONE, ANYONE will reach out to me and pull me into their circle of influence and friends.
Suffice it to say, I've changed a lot in the last 24 years, usually for the better. While some changes were made due to the natural process of growing up, others were made with the help of professionals and medications. These changes were both small and large in their impact, and they all made me who I am today. However, my most defining experience in both the past and present is with the National Institute for People with Disabilities of New Jersey's Asperger's Skill Building Network (ASBN). Thanks to the group, not only do I have friends, but I also know how to make them. Furthermore, I know how to have a conversation, how to recognize how a person is feeling and even the best way to interview for a job. It is also thanks to this group that I have a job as an intern. In fact, my internship is provided by ASBN, giving me the opportunity to work alongside the program and people that have taught me so much.
If, just three years ago, someone had told me that I would have friends, a job and the skills necessary to keep said friends and job, I wouldn't have believed them. The idea that I, the girl who was teased and excluded and thought of as weird could be a 'normal' person was ridiculous. Yes, I wanted friends, yes I would like to earn money in a job, but the problem was that friends and employers didn't want me. As great a person as I knew I was, not one person in the world could see this.
For the longest time, I was angry at the world for ignoring me. I had so much to give and no one was willing to give me a chance. They condemned me before they ever knew I who I was. At the time, I had no idea that the one I should have been angry with was myself. I was the one who couldn't adapt to the world, I was the one who was acting in a way that was far from socially appropriate. Then again, how could I know I was being socially inappropriate? I had no clue that there was a right way to act, and that if I acted that way, I would get what I wanted.
As a participant of the Asperger’s Skill Building Network, I learned all the little social cues and tricks for making and keeping friends, for maintaining a job and even just expressing myself with no more than a smile. For the first time in my life, I saw there was a way for me to fit in, for me to have friends and have fun and not like a third wheel or a pathetic loser whose only real friend was my mom and dad. ASBN completely changed my life by teaching me the skills I needed to get along in the world. And, over two years after graduating from the program, ASBN is still providing me with ways to grow.
Today, rather than be a participant of the group, I am an intern. I've been an intern for a little over a month now, and I've already learned so much. Not only am I getting real world experience on the job, but I am also getting the rare opportunity to get feedback on the job I'm doing. With this internship, if I make a mistake, I don't have to worry about getting fired or yelled at. I know that my employer will tell me what I've done wrong and allow me to fix my mistake without kicking me to the curb. Thus, I am able to work in a nearly stress free environment and, at the same time learn how to correctly implement the job skills I learned two years ago.
Perhaps more importantly than work skills and experience, the internship is providing me with a totally different way to view ASBN. As a participant, I defined my experiences in how ASBN could help me. As an intern, I hope to define my experience by how I could help others LIKE me. See, when I look at the current participants, I see a little of myself in all of them. I see their loneliness, their frustration and above all, their desire to make themselves better. Looking at them, I can see how I must have been only a few years ago. I get the chance to see just how much I've improved, and more importantly, provide others a way to improve themselves.