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

The Culture of Self-Advocacy
People with disabilities contribute to each other and society, and self-advocacy is a point of pride that highlights the power that people with disabilities have when they join together.


John Smith is a Coordinator at the Institute on Community Integration at the University of Minnesota. He may be reached at smith144@umn.edu.

We all know that the Self-Advocacy Movement is about power! It is about people with disabilities working together to make their voices be heard. Self-advocates want to make communities better places for everyone. I think self-advocacy is also about people feeling a little (or a lot!) more powerful in their own lives. But how does this happen? I think it is because of the culture of the Self-Advocacy Movement.

In a project titled Leaders with Developmental Disabilities in the Self-Advocacy Movement , Joe Caldwell captured the oral histories of 13 prominent self-advocacy leaders. Though I have been an ally to the Self-Advocacy Movement for several years and attended many meetings and events, listening to their life stories taught me even more about the culture of self-advocacy.

What do I mean by culture? I am talking about things that everyone agrees on, like what is most important for self-advocates to be talking about, the best way to make group decisions, and even the kind of words people use. These are all parts of a group’s culture. Other parts are the way leaders are chosen, how the work gets done, and what the members do to have fun and celebrate successes. The culture of the self-advocacy movement is hard to explain to people who are not part of it. The only way to really understand is by getting involved.

In the Self-Advocacy Movement, everyone agrees on certain things. One is that people with disabilities deserve respect. Everyone knows what the “R-word” means and gets a little angry when they hear it! Many groups call themselves People First to remind themselves and everyone else that they are more than what their disability label says. Self-advocates also understand how it feels to be left out, and want to be valued members of their communities. The Self-Advocacy Movement is about people learning what their rights are, and how to use them to get what they want and need.

The only way to really understand is by getting involved.

The Self-Advocacy Movement brings people with disabilities together. The culture makes this happen as groups of self-advocates listen and learn from each other. They find all the things they have in common. Self-advocates know it is important to have time to socialize and become friends with each other as they do their work. Meetings are not rushed and there is always time to talk. In describing her self-advocacy group, one person said, “We are family, and we tell each other the truth.” Julie Petty, a self-advocacy leader from Arkansas, remembered how good it felt to join a self-advocacy group. She said she finally got a chance to be with people who understood what it was like growing up as a person with disabilities. Too many times people are made to feel bad about having a disability. Sometimes they may want to hide their disability so they can fit in. Self-advocacy events are great places for people to change that feeling. The self-advocacy movement is about people with disabilities being proud of themselves. They see what they can do together.

The Movement is also about making sure that people with disabilities are the ones in charge, making the big decisions. Nancy Ward, a founding member of Self Advocates Becoming Empowered, recalled how important it was for her and other self-advocates to learn how to run a national organization. They needed to show others that they could do it. When self-advocates work together in groups, they know it is helpful to have leaders, like a president who can make a meeting run well, and a treasurer who understands money. These leaders are usually selected through fair elections and people take turns doing these jobs. Self-advocates do not want or need others to tell them exactly how to do things. They sometimes do want help from advisors in carrying out some of their decisions. Everybody knows a good advisor is someone who can be a friend, and does not take over the group, but who listens and makes suggestions if they see problems coming. It is also cool to have someone to share a beer or soda with after a job well done. 

The Self-Advocacy Movement is about people helping each other become leaders. Self-advocates know that everyone is able to be a leader. The culture of self-advocacy is what brings out those new leaders. We all know that being a good leader takes skills. Often the only way to learn those skills is by trying them out. In thinking about how he became a leader, Victor Robinson, a self-advocacy leader from Washington, D.C. remembered how other self-advocates helped and encouraged him. People new to self-advocacy have a chance to meet people with many types of abilities, talents, and disabilities and watch how they have become leaders. For some, that means speaking in front of the group, for others it may mean being in charge of helping new people feel welcome. Sometimes not everything goes as planned as each person finds their own way to be a leader. At self-advocacy events, everyone is usually patient and understanding. That is just part of what self-advocacy events are like.

The culture of self-advocacy shows that people with disabilities are strong. Liz Weintraub remembered learning to say “No” to her parents for the first time, with support from her self-advocacy group. Self-advocacy groups are safe places where people can get practice speaking their minds. Being part of a self-advocacy group teaches people how to ask for the things they need. Then they do not need to get frustrated and angry when others do not seem to know. People learn about strengths they did not know they had.

The culture of self-advocacy is also about the power of teamwork. When self-advocacy groups take on challenging projects, they learn ways to work together and solve problems that get in their way. Tia Nelis, a well-known national leader in the Self-Advocacy Movement, recalled the good feeling that came when their organization was asked to take on some new jobs. That usually happened when others saw how well they did their work. That is a time to celebrate! Everyone should be thanked for their part in the success.

Finally, the Movement is about building a bigger voice for issues self-advocates care about. They want to make a difference in their community and show the strengths they have to offer. Some issues require asking government systems to make big changes. That means going to state capitols or Washington D.C., where laws are made, and working together to make their voices heard. Sometimes, when self-advocates are speaking up about an issue, they team up with other groups who are having the same problem. That may be people who have different types of disabilities, parents, or some other group that is not being treated fairly. The Self-Advocacy Movement is about making sure that everyone in the community is respected, including people with disabilities. The culture of self-advocacy is what makes people gain respect for themselves, their rights, and for each other.