Personal Story

Feature Issue on Self-Advocacy for People with Intellectual, Developmental, and Other Disabilities

What Self-Advocacy Means to Me

Author

Eva Reed is a member of the Self-Advocacy Advisory Committee at the University of Minnesota’s Institute on Community Integration. She lives in Bloomington, Minnesota.

I get tired of staff at school saying that I need to advocate for myself. It really bugs me because I try every single day of my life to tell the people around me what I need and what I want. And so, when somebody points out to me that I need to be "my own self-advocate," I feel like they're basically saying, “You don't try hard enough to tell people what you want and need. People who ask me to advocate for myself need to work on their own listening skills! The staff at my program need to really start understanding that I try and advocate for myself each and every single day. Living in my body is a huge challenge for me because my body hurts and it gets tired from me trying to sit up straight and make it do what I want it to do. I don't think the staff I interact with really understand what it is like for me to be living with cerebral palsy. I absolutely know that they for sure don't know what my home life is like. When I'm at home with my parents or an aide, or my aunt Beth, they don't ask me to "self-advocate." Yes, they might ask me to speak up for myself when they can't hear what I'm saying or asking them. They never say to me "Eva, you need to use your words and self-advocate” because the people involved in my home life have known me forever and they know how it feels for me to be in my body. They also get that it is very hard for me to be in my body because my body hurts every single day.

Illustration of self-advocate Eva Reed, who is smiling and sitting in a wheelchair.