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

Where are tomorrow’s self-advocacy leaders, and how should we support them? We’ve been struggling with these questions for more than a decade. Leaders who won major victories over the last few decades against abusive institutions, are growing older, and we worry about a lack of soldiers for future battles. There are encouraging signs, however. Successful leadership development programs typically have three key steps: Making an invitation, building trust, and planning early for succession. This means helping the organization do focused work to meet this need.

Historically, self-advocacy groups came from the developmental disability community, but we welcome any person with a disability who wants to join the movement. You do not have to have the DD label. The most frequent entry point into leadership is occurring in states that have formal systems for inviting young leaders to get involved. Leadership opportunities that arise through State Councils on Developmental Disabilities, for example, have been particularly effective. University Centers for Excellence in Developmental Disabilities (UCEDDs) and State Protection and Advocacy Systems (which might be called Disability Rights in your state) also partner with self-advocacy organizations to provide training and information about opportunities around the state. 

Opportunities for leadership growth have also come from Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. These programs provide training and services, typically as part of a University Center for Excellence in Developmental Disabilities. There are now 52 LEND programs across 44 U.S. states. These programs were traditionally for the professionals, like special education teachers, therapists, doctors, and family members. Self Advocates are now included in the projects so they can share experiences and so professionals get more than what is in a book.

In many high schools and independent living situations, young people with disabilities are finding support and building trust among their peers. They are finding opportunities to connect with each other, to feel safe, and to participate in activities that connect with their lives.

Some states—Vermont, Arizona, and Alabama in particular—have organized a lot of outreach through their transition fairs and in individual future planning, and funded youth community organizing efforts.

As today’s leaders, however, we must do more to nurture that enthusiasm to ensure a strong start to self-advocacy action groups. Like the community organizers of an earlier era, we must put a structure in place that encourages people to talk about issues. A few times we started self-advocacy groups, but we didn't follow through. When you start something, you've got to talk it over with the group and discuss how much time you can truly commit. Sometimes you need to spend years with them so that you can be part of their graduation, so that you can be part of their finishing plans, such as helping them look for and fill out applications. And if they don't have support for that, or if you’re not getting to know who they trust, then advocacy is not going to happen. You need to bring people to different group meetings and get permission from parents or guardians or foster parents.

Sometimes, we’ll be fortunate enough to have a newly graduated self-advocate who can call on a former teacher and say, “Hey I’m in this self-advocacy group now and I want to come and teach some of the things I’ve learned to your students.” It’s all about relationships. Who do you know? What organizations are you involved in? We’ve had the best response rate and success in working with the schools through resource classrooms. We come in as a community organization to do a training session with them and we’ll do a basic self-advocacy class. We have activities that are really fun and we make all of our activities relate to students’ lives right now because if it doesn't, they won't connect to it at all. You talk about jobs, and you talk about the basics.

You’re also going to find future leaders in trusted places in the community for people with disabilities. Independent living centers are a great place to meet people. They often allow organizations to go in and make presentations about what they do. When we do these events, I always try to stay after the presentation. I’ll say, "I'll be here after the meeting and anybody that would like to talk to me and get my card and other information and ask me questions, I'm going to be here." That is trust building. It’s community organizing. It’s taking the pulse of people and getting together with them about issues of concern.

I remember meeting a couple of young ladies once at a resource class. They were two sisters, and they were employed, but they were worried about whether they would continue to have jobs after high school. We began looking for adults who were recent graduates to mentor them. We just happened to know a young lady through the Youth Action Council of Arizona who really connected with them. She had recently graduated, and she still had that youthful vibe. It was a powerful connection that started right when they met. The sisters were worried that once they left school, there would be bullying on the job site. So, this young person became a mentor to these sisters and they are friends to this day. It’s probably been 12 years now.

These connections are critical to people’s lives. Often, young adults with disabilities need a safe place to talk because sometimes they don’t want their family to worry about them. They won’t tell their family about the bad things that are happening to them at work, like bullying or teasing. Instead, they will come back to the group, connect with peers, and work through the problem. Or they might decide to shoot a video about the problem to help other people learn some ways to stick up for themselves. Now all of a sudden, they are problem solving and looking at the whole thing in a new way. That’s what advocacy groups are all about; people looking for something. Sometimes, you don’t know exactly what you’re going to find, but all it takes is that first invitation to come to a meeting and find out more information.

They will stand for the core principles of self-advocacy. They will push for people not being … isolated from the community.

And once you build trust with a person and they see that you follow through and they see that you have other opportunities, then they begin to see themselves maybe doing more with the organization. And it may start out as fun, that's perfectly all right. Trust comes in many forms, and once you get the group’s trust, then you look for opportunities. You might say to yourself, “What could I do with this group? Wow. Look at that person who's just like me in many ways, either by a disability diagnosis or by experience or just by where they live, whatever that might be. We're connected!” It really is important that you have those people in your organization who take the time to build these kinds of relationships.

The biggest barrier to building strong self-advocacy organizations is a lack of money to pay for advisers and maintain connections with other organizations. Without a well-known name or a budget, it's harder for people to have information to hand out and talk about your group. This is the thing that helped me the most when I got involved. I would show a brochure to someone and ask if there is anything that looks interesting to them. Then we could have a conversation about what that group offers and help them feel that connection. There's so much going on in people's lives, so if you don't connect quickly, you'll lose them. You have to talk about it in a way that promotes self-advocacy as a life-changing and life-growing opportunity.

One of the first things I did when I started our People First group in my state was to say to myself, "I'm the first person. Who's going to be the next person?" After a few meetings, I had already started planning for who that next leader was going to be that would take my place. And I had to remember that they may not look and act the same as I do, but they will stand for the core principles of self-advocacy. They will push for people not being in institutions and not being isolated from the community. They need to have this opportunity to grow and to learn what self-advocacy is, and how it can help build the life that they want.

People who have worked really hard and put in the time to develop their leadership skills are hungry for the next opportunity that will give them skills and provide motion to their career. We have to keep our eyes on ways to give these people chances to lead. When you notice a shining star at an event, introduce yourself and write down their contact information. I always say, “My goal is to help you make your dreams come true. Let’s talk about that.” If you receive an opportunity to serve in some way, but it’s not right for you, recommend someone else.

Finally, don’t be discouraged if it seems the ranks of self-advocacy leaders are shrinking. We learn when our movement is small and when it is large. There is opportunity everywhere, but we must keep going and showing advocates why the work is meaningful to the community. When you build a group you can respect and are proud to be a part of, that also helps you attract newcomers.

When I started in advocacy, I had great mentors, including Tia Nelis and Nancy Ward. They put me in every training I could get into and I was a sponge. I started with short talks and three years later I did a keynote speech at a conference. I have done work I am proud of and supported the dreams of self advocates since then.

I believe in people and believe that if we support the next generation and make opportunities for them to speak up, they will see their work improving their own lives and the lives of others. They will be respected for what they say and do.

If we keep valuing their work, making opportunities, and telling people, “You’ve got this,” over time people will knock down their doubts. They will become powerful adults that change their world.