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  • Mitchell Levitz's resume catalogues many pages of articles co-authored, speeches made, workshops led, boards and committees served on, and service to his community. He works as a disabilities specialist at the Westchester Institute for Human Development, where he teaches about self advocacy, coordinates a self advocacy group, and is a member of the self-determination research team. In addition to the numerous books and journal articles he has contributed to, he co-authored the book COUNT US IN: Growing Up with Down Syndrome. Born in 1971, Mitchell has Down syndrome, and I interviewed him about his experiences growing up, moving out, and pursuing a career in advocacy. In this excerpt from our interview, Mitchell talks about moving from New York, where his family lives, to work as an advocate in Cincinnati.

    I worked for many years with Essie Pederson, helping plan the self-advocate conference for the National Down Syndrome Congress convention. We were talking, and Essie mentioned that she was starting a new non-profit organization, and she wanted to try to recruit me to come out and work with her [in Cincinnati]. So we had a family discussion, looking at the pros and cons. To me the pros were one, that I would move to a whole new state, continuing to further my independence. Second of all, where I'd be working would be very near to where I would live. And I think it would further my career. I made the decision to move out there and I stayed for about six years.

    At first, my father was a little apprehensive, but I encouraged him, you know, about the good things about it, and so then he was supportive. I told him not to worry, I'll be fine. I know that it would be a big change, going to a whole different state, but we'll always be close and we'll always stay in contact with each other.

    On moving day, we did have one of those big trucks, those U-Hauls, and we moved all of my stuff, we loaded it up, we put all the stuff in it and we drove about twelve hours until we got out there.

    When [my parents] drove away, they did what any parents would do! I guess they were a little bit nervous, but I could tell that they were happy. I was happy, confidant, a little bit scared, but you know, but I felt like I was really happy about the move.

    There was a big difference [in Cincinnati] because [Westchester] is where I grew up and was born, and my entire family comes from here. In Cincinnati I didn't have any family or anyone out there. And so it was a whole new, different situation when I was out there. I was totally on my own, independent. I was in a small apartment, and everything was very nearby, so I was able to walk to the different places. The office was down the block, so it was very easy to get to.

    The organization [I worked for] was called Capabilities Unlimited, Inc.. Besides Essie, I worked with Mia, Tia and Katie. Like me, Mia Pederson is also a past Board Member of the National Down Syndrome Society, and she is on the Self-Advocacy Advisory Board.

    Tia Nelis is very involved with Self-Advocates Becoming Empowered, and she also works out in Illinois. She also does a lot of work with Steven Covey, because she and Essie are licensed trainers to train people with disabilities on the “Seven Habits of Highly Effective People.”

    I was the Editor in Chief of the Community Advocacy Press, a newsletter that we produced. We chose different topics, different issues. One issue was on health, or another issue would be on self-advocacy, or leadership, or legislative. So basically we came up with different topics, different themes for the different issues. We would send these out to the different reporters that we have and try to get articles from them on this theme, on this topic. I worked with a lot of reporters, and they submitted articles and we (myself and my co-editors_, had to put the issues together.

    We also spent a lot of time on doing leadership training, in terms of training individuals with disabilities on how to be leaders in their own communities, by serving on boards, and to train them about the different roles that they could play, serving on a committee.

    I trained them on how they can be an effective leader, in terms of what it entails, and what is involved with it, because there are a lot of steps in how to be an effective leader, and all having to do with self-advocacy. It's about speaking up for themselves, and figuring out what kind of a leader they really want to be. Part of being a leader is encouraging others to take more of a role in their own boards or committees that they want to be part of.

    The first step is in telling your own story, and you show people what your life is like. It's about encouraging people to share their own experiences of how it was like growing up with a disability. And sharing with others what kind of an impact that has had in my own life. So it's a matter of encouraging people to share their own life story. What I do, when I go around the country doing presentations, I always start off with my own personal story, my own personal experience, because like I said, that will help them to identify their own life story as compared to mine. You may find that we all have something in common. And that is why it's important to share your own story, because if you share your own story you may find that someone else will say, “Wow, this is a great person, I want to get to know this person better.” So you can probably be able to work together, and perhaps be able to serve on a board or committee with that person.

    [I really enjoyed] being able to work with everyone [at Capabilities Unlimited]. And I really got to know them really well, and I got to know their work style. We definitely worked well together.

    I think it was a wonderful experience.


    Listen to all of Mitchell’s stories here:

    This is an edited excerpt from a life history interview I conducted for my thesis in the Oral History Master of Arts program at Columbia University, in which Mitchell Levitz shared with me his life experiences and reflected on his role as an advocate for himself and others with disabilities. The full interview was conducted on August 6, 2013, in Cortlandt Manor, New York, and will be submitted to the Regional Oral History Office at the University of California, Berkeley, for inclusion in the Disability Rights and Independent Living Movement archive. I will also submit a methodological paper providing context for and analysis of my process conducting and sharing life history interviews with self-advocates with Down syndrome to the Academic Commons at Columbia University. If you would like to know more about my process, please contact me here. With gratitude to the National Down Syndrome Society for their early support for this project.
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