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

Mike:  To me, interdependence means many things. It’s getting to know someone on a level where you trust them in life for support. In our traditional thought about support people, we see regulations come down that mandate a person to do a certain thing in a certain way. To me, interdependence is way more personal than that when it comes to interacting with people with disabilities. One thing that is lacking with our society today is the fact that there still is the idea that people with disabilities are the ones with needs. Some people think we don't give back to those that support us or that we have nothing to give to those that help us. That couldn't be further from the truth.

Sophia: When I first started working as a support person in the self-advocacy AmeriCorps project “Our Experience is the Best Teacher,” I was mentored by people with significant disabilities. I was in my 20s and needed the wisdom and practicality that my mentors offered me. We didn’t impose rules against friendship or false notions that said the person without a disability is automatically the leader. I was supported to receive the gifts offered to me. These were not insignificant gifts, nor was I looking for them. I learned practical things, like planning and thinking of details from Kim Henchen, who became my co-team leader in the project. I helped her with personal needs, from eating to transferring, and she helped me with planning and motivating our team, and “little” things like remembering to set the alarm clock when we traveled. I grew spiritually because of Deb Anderson, who somehow addressed deep wounds for me through her presence and her friendship. I found mutual love and friendship with several people with disabilities. I learned the dignity in being able to give as well as receive, for all people. Even if you don’t see what people are giving you, it doesn’t mean they aren’t giving it.

Over the years, I grew in knowledge and responsibility, became more familiar with the world of self-advocacy, and sometimes worked with people who needed my help more than I, theirs. I also grew as an advocate, learning from people who had to do it every day, how to speak up for myself. I was put in leadership positions that had me in the spotlight rather than behind the scenes supporting where I was comfortable. Navigating how to be my full self and share my talents while supporting others to do the same is quite a journey. I learned to step up, and now I find that I am needing to figure out how to better step back. How to offer what is needed only when it is needed, and not take responsibility from others. How to give people space to learn and lead, yet still make sure the details are covered. It is a difficult balance beam to walk and I fall off as much as I stay on.

My favorite part of Norman Kunc’s “A Credo for Support” is, “and when you struggle with me, let that give rise to self-reflection.”

We have struggled together sometimes: between your needs and mine, your freedom and mine, your responsibility and mine, your work and mine. Interdependence is not always easy, but it is definitely worth it. And the pressures of ableism are always at the door: The ones that suspect a person without disabilities if they are in close relationship with a person with disabilities. The ones that hold my word higher than your word, even when we are saying the same thing. The ones that favor my way or my rate of speaking or working over yours. The gross inequalities in our social lives and work opportunities. The ones that say if you need intellectual help from another person that you aren’t making the decision yourself. The ones that favor production over connection, speed over slowness, and a pretense of never showing a struggle and being able to perform the same way every moment of your life.

Mike:  For so long, the disability rights movement talked about independence. The difficulty with speaking about people with disabilities in the realm of independence is that once perceived independence is achieved, that's what the able-bodied world expects of a person. "You wanted it. Now you got it. You can do it on your own." For this reason, I now say "interdependence." This term better describes the relationship that people have in general.

Sophia: I also like the term “equity.” We may not be equal, but we do need each other. We can resist ableism by honoring the gifts we each bring.