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

Advocacy is as individualized as people with disabilities. We are all different from one another. Some are autistic, like me. Some are deaf, like my great-grandparents and my cousin, Ian. Some are blind, like my fellow Uniting for Change board member, Destiny. Or, have cerebral palsy like my friend June. But we are all important members of our communities. Too often society separates us from others based on our disabilities. We’re seen as “other,” as having less value as human beings. During this pandemic, some have indicated that we are expendable, not worthy of a ventilator. We must change this perception.

There is only one real way to do that. Simply put: Show up acting and looking like you belong alongside everyone, with or without a disability, in the community. I’m talking about creating or strengthening valued social roles. We have to speak out and act out in order to really be part of our communities. This is a process that starts within each of us.

Social Role Valorization is a complex area of study. It means our lives show their value through the roles we have. It means we need to take on positive roles so people will take us seriously as thinkers and self-advocates. We need to take these roles seriously. Examine them, define them, and learn how we should perform them. If it makes you feel good, it’s a positive thing. Advocate is a role, and all our other roles feed that.

Many of our roles start with our relationships. We all have meaningful and positive family roles. Brother or sister. Son or daughter. Mother or father. Grandson or granddaughter. Aunt or Uncle. We also have connections to people unrelated to us. We are friends and confidants and mentors. In order to be a good friend and family member, you could do various things like emailing the people you care about. You can stick up for your friends when they are bullied. You can participate in family game nights and watching movies and TV shows with family and friends. You can send packages to friends and bake for them. It can be anything, large or small, that shows you care.

Next, consider what you do where you live. Some of us live with our families and others, independently. Some others might live in a group home or supported, with friends. Regardless of your living situation, there are positive roles related to home life that show us as capable. Doing chores makes you an essential part of the fabric of home life. If you are not already responsible for any chores at home, doing just one thing to help around the house can be empowering. You can load or empty the dishwasher. You can make and clean up some of your meals. You can do weekly cleaning. You can fold and put away your laundry. You can plant and maintain a garden. You can take out the garbage for weekly collection.

Champion, supporter, proponent, promoter, campaigner, crusader. Synonyms are a way to help you focus if you think of yourself as a champion, you can take a prominent role on the front lines of any issue.

Community and neighborhood membership push our roles into a public light. Here’s where the rubber meets the road. The more people who see you as capable and doing age-appropriate stuff, the more normalized and accepted disability becomes in the broader community. Get out and walk. It’s the best way to own your neighborhood. Participate in your neighborhood cleanup. Shop regularly in the same local stores and eat regularly in the same local restaurants. People need to know who you are and miss you when you’re not there. Listen to the news. You’re going to want to be an informed voter. If you haven’t already, you need to register to vote. Vote in every election and email your legislators and council members about the issues that are important to you. Volunteering at any community organization that meets your interest is a good way to meet new people as well as showcasing your abilities. The same is true of taking classes at the local college or community center.

Many people have valued social roles as participants in athletic or fitness activities or even as fans or spectators for local sports teams. Think about the areas that interest you. Start small where the barriers to getting started are low. If you like basketball, start following it more closely and share with those around you. Loop people in with your enthusiasm. If you have a bike, join a riding group. Interested in yoga? Every community has yoga studios.

I think one way to consider your advocacy is to think in terms of synonyms for advocate: champion, supporter, proponent, promoter, campaigner, crusader. Synonyms are a way to help you focus your priorities and plan the areas to get started. If you think of yourself as a champion, you can take a prominent role on the front lines of any issue.

Take me, and my experience, for example. I chose the synonyms of spokesman, fighter and upholder. As a spokesman, I speak up in all of my roles in all areas of my life. As a fighter, I stand up in any way I can so that people see me, and others like me, as capable. As an upholder, I am seeking like-minded people to join forces with me.

Because I had various social roles that were all meaningful and positive, I was asked to present to various groups, starting with the Boy Scouts at my church. Over time the presentations got more sophisticated and the audiences, more professional. Because I was doing these presentations, I was asked to volunteer on the Georgia Advocacy Office Supported Decision- Making Advisory Council. It was through the work of the council that I discovered my true passion: self-determination. That led to my SARTAC Fellowship.

I didn’t just come up with self-determination and Supported Decision-Making as issues that I was passionate about. I followed a path that began opening up because I had meaningful roles. I was out in my community testing the waters. I was doing things that all people my age were doing: I was taking classes on the campuses of the local community college and the local technical college; I was confirmed in my church, was attending regular services and was volunteering; I was doing the weekly grocery shopping; and I was walking daily through my neighborhood.

Your path to active self-advocacy will be different than mine because your roles are different than mine. And as your path opens up, the choices you make will also be different than mine. Follow that path, embracing every role and your passion will become clear to you.