Feature Issue on Self Direction

My self-direction journey has been more of a self-discovery than a series of steps to make my life better. When I was first asked to try it out, I said this isn’t for me because of all the regulations that were in place, but when I think back now about what it has given me, I am grateful for the opportunity.

The author, on a recent outing.

Self-direction gave me the opportunity to expand my own self-advocacy. It is about the exploration of who you are and what your life could be. Because I have had this opportunity, I now believe in myself. I have developed a faith that has become very important in my life, and this is perhaps odd when you think about where I came from. I was abused as a child, which led to an addiction as a teenager and young adult. People thought of me as somebody who didn’t care about my future, which was about right because I didn’t think I had one. There was one school nurse, though, who saw something in me and told me she saw a sparkle in me and that she hoped I would reach for the sky. That shook me up, and I started fighting for what I wanted in life.

At one point, I started researching the marriage penalty issue for people with disabilities and wanted to write legislation to change things. I connected with the Self-Advocacy Association of New York State, but what I had in mind wasn’t in their ballpark. Even so, they hired me for a program called “Experience is the Best Teacher.” Then something serendipitous happened. I met someone at a day habilitation program who was sitting in a hallway, uncomfortable but not really knowing how to make his needs known. I sat with him and talked about how to ask for something you want or need. I realized then that this was what I wanted to do. That was 22 years ago, and I’m still here, doing advocacy work.

Today, at 54, I’m a peer specialist for the Office for People with Developmental Disabilities and am working on healthcare equity issues for people with intellectual and/or developmental disabilities. Working within the system can be hard because I still see so many problems, but my faith keeps me here. I want to do work that is about more than just billable services.

I just wish the regulations for self-direction were clear and not so confusing. I recently lost a staff member due to a paperwork mistake and that was hard to cope with because it turns lives upside down.

Even with the problems, I would not have the life that I have without the opportunity of self-direction. So, give yourself grace and understanding if you decide to do it. If you are willing to go the extra mile, to put yourself out there and say, ‘I deserve better,’ then you should do it.