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

Like other important movements in history, self-advocacy is defined by the struggles that people with intellectual and developmental disabilities (IDD) endured, and continue to endure, as we try to live, work and be part of our communities. Self-advocacy is not a program; it is a civil rights movement and it has been growing for decades. It has helped to shape how we think about people with IDD, seeing us as people first who are capable of speaking for ourselves.

There is a long history of removing people who are considered “less than” from our communities. And the more significant the disability, the further away we’ve put them. For many people with IDD, this meant being taken away from their families and sent to large institutions. These buildings were overcrowded and understaffed. They were terrible places to live. People were often referred to only by numbers or by labels, such as “retarded.” They were often not treated as humans. In our country, this happened for more than 170 years. And many people continue to be institutionalized in smaller settings.  

In the late 1960s, we finally learned that institutions are not good places to live. As people moved back into their communities, some got together and talked about what mattered to them. In the 1970s, people with IDD started organizing meetings and conferences and declared, “We are People First!” It was really important to be seen as a person first, not just a disability label. Some people, who had never been given the chance to speak in public, said they wanted to stop being called “retarded” and other offensive names that put them down. Many people said they were tired of other people making decisions for them. Speaking up is a cornerstone of the Self-Advocacy Movement.

The Self-Advocacy Movement uses ideas from other movements in history. In the 1950s, the African American Civil Rights Movement declared “I am a man!” and demanded equal rights. The Women’s Liberation Movement taught us that “the personal is political” and showed us how to speak up about people not being treated fairly because of their gender. People with physical disabilities started the Independent Living Movement, demanding greater access in their communities and speaking up for disability rights. And those in sexual orientation and gender minority communities, tired of being harassed, spoke up and demanded equal rights.

The Self-Advocacy Movement is different from other movements, however, in that it includes people who don't always communicate in the same ways others do. It also includes people who have been dismissed, spoken down to, spoken for, and have not been given the chance to speak for themselves. Not being able to speak with words does not mean you do not have something to say. Self-advocates speak up for themselves and for others with disabilities.

Self-advocacy is also different from other movements in that it relies on support staff, or advisors. These are usually people without disabilities who help us by explaining information so that we can do things on our own. Good advisors help us but do not speak for us. The best advisors give us the skills and confidence we need. Advisors should be sitting on the sideline and not talk during a self-advocacy meeting unless they're asked. This can be really hard when the support person’s paycheck is coming from an agency, and the agency doesn't believe in what the group is doing. We need allies in the Self-Advocacy Movement and good advisors are good allies.

The Dignity of Risk

Dignity of risk is central to the Self-Advocacy Movement. It means allowing us to make mistakes and learn from them, rather than overprotecting us. Respect our decisions, even if you don't agree. If it's a mistake, it's a mistake and not the end of the world. The main idea is that we need the power to make our own decisions. People without disabilities are allowed to make mistakes and learn from them. But as self-advocates, we still have to fight for that very basic right.

One example of where we struggle to make our own decisions is with money. There are a lot of people who refuse to give money to self-advocacy groups because they think we’re going to make a mistake. But there are many businesses, big corporations, even the federal government that make a lot of mistakes with money. And they don't get their checkbook taken away and never given back to them. Another example is making decisions about our bodies. Some professionals and others keep information about sexuality or medical issues from us because they think that people with IDD will harm themselves. The Self-Advocacy Movement supports people in having the information they need to make their own decisions.

Identity

What we call ourselves and how we refer to each other matters, but we can’t let it divide us.

Self-advocacy doesn’t just mean advocating for yourself. It's learning how to advocate for yourself and then pass on your skills to others to help them be able to speak up and advocate for things that are important to them. But just having IDD does not make you a self-advocate. People involved in the Self-Advocacy Movement share values around community inclusion and work to advance the rights of people with disabilities. But a lot gets labeled as self-advocacy that is not self-advocacy, such as when an agency has people with disabilities sitting around not doing much, or just doing social things and they don’t have any goals or other things they are working on. That is not a self-advocacy group. It's simply discrimination against people with disabilities under the guise of self-advocacy. And it's really important that we demonstrate that.

The self part of self-advocacy is about advocating and speaking up for the things that we want right now, but we have to move beyond that. We have to think about the we part of self-advocacy. We don't just stop when we get what we want. We need to think about others when we advocate, including the people who come after us.

The Self-Advocacy Movement has helped many people see themselves as people first, not just a disability label. Using “people-first language” is one way we can help others see this. Rather than saying “a disabled employee,” for example, which focuses on the disability, we’d say “an employee with a disability.” This is not about using politically correct language. It’s about access, and changing how we do things to be more inclusive.

Some people in the larger Disability Rights Movement don’t like people-first language and will say, “I’m disabled and proud,” in the way the African American Civil Rights Movement said “I’m Black and I’m proud.” But in self-advocacy, it’s really hard when you’ve had the label “mentally retarded” used against you, when you’ve been spit on, pushed down the stairs, told you were stupid. There is a lot of stigma there and it’s hard to find any pride in those words.

We need to address parents who say the Self-Advocacy Movement isn’t for their son or daughter because they are too disabled. Self-advocacy is about understanding that everybody has value and everybody has something to offer. We believe in accepting people for what they have to offer instead of judging them by what they can't offer. We still hear people say that self-advocacy is only for a certain kind of person, maybe someone who is “higher functioning.’’ No! It's really about how we find ways to value everybody.

We need to make more progress in working with people who communicate other than with words. Body language says a lot, and we need to understand that better. We need to learn patience, and wait and really listen to people who use communication boards and other ways to talk. We also need to practice self-care and help people feel good about themselves. That will help them be more effective self-advocacy leaders. Self-esteem is important. And we need to teach people without disabilities about respecting and knowing who people with disabilities really are.

If more people with disabilities knew about our issues— other people making decisions for us, not getting medical treatment, being separated from our peers in school—and how this affects them personally, they would get involved in the Self-Advocacy Movement. We need to find new ways to reach them and make sure they have support to help them speak up and get involved.

Conclusion

Self-advocacy isn't a program. It isn’t a club or something to check off on a to-do list. Self-advocacy is a social and civil rights movement and it’s about people's lives.

We have learned to advocate, and to ask for what we need, and we do so in large numbers. There is power in these numbers and we need to use the allies we have in providers, agencies and families to make the most of that power. But there is a lot that still separates us, even within the disability community, and there are a lot of barriers still in place that make daily living inaccessible to many, many people. Because we have to rely on support from state and federal agencies, and on people without disabilities, we haven’t come as far as we would have liked.

Some of us are getting older and we worry about the future of the movement. We all have different things going on in our lives. But there are still a lot of people fighting and who still have fire in the belly. You see it with every movement – it will peak and then drop down again. It might be time now for self-advocacy to rise up again. As people with disabilities, we can all become directly involved in making history and making our own choices about the future!

There are some people in the Self-Advocacy Movement who don't want to be called a self-advocate. They want to be called an advocate. Others of us do want to be called a self-advocate. As one leader of the movement said, “It's not a program for me. It was a movement I got involved in, like how the Civil Rights Movement helped African Americans find their voice. The self-advocacy movement helped me find my voice and get what I want and need for my life and I'm now able to pass on those skills for other people to have their own voice.” For those reasons, the self in self-advocacy is still important because the self had been taken away from people with IDD for so long. If you want to be called an advocate, then so be it. Be called an advocate. But don't try to take power away from the movement. Many people with IDD still don't believe in themselves. They don't have a voice because people have told them, even people who they love like their mom or their dad, that they are not able to do things for themselves. So, when they finally find their voice, they're proud to be called self-advocates.

Self-advocacy can be as big as protesting in a rally. But it can also be as small as speaking up for what you want for lunch. Because in the case of people who have been denied the opportunity to speak, just asserting those choices in small ways is in itself a political act. It is how people get power in their lives instead of giving others power over them.

Victories

Today, it is common to see people with IDD at the table when decisions are being made. Self-advocates and allies fight for equal access to healthcare. We speak out against rationing and demand that direct support professionals be allowed to be with us in the hospital. Self-advocates have raised expectations about the role of students with disabilities in their classrooms and in planning meetings. Many students with IDD now run their IEP (Individualized Education Plan) meetings, when 20 years ago they may not have even attended.

Self-advocates today are more often at the table when decisions are made. SABE (Self Advocates Becoming Empowered) and ASAN (the Autistic Self Advocacy Network) work with other national groups to change policy and practices. But there is still a very long way to go.

A movement needs role models

We still live in a world where people who provide support have a lot of power over us. It’s hard to advocate for yourself if you can’t even decide what you’re having for dinner. With this difference in power, it’s difficult to find new self-advocacy leaders. For this reason, it is so important to have role models. It gets people saying, “Why am I not doing this?’ Or, ‘How come you can do that? You have a disability just like I do.’ People need experiences and also chances to go to conferences and other places where self-advocacy is taught. They need to attend workshops, where people start to understand what it means to speak up and learn how they can speak up, so they can say, ‘Wow, I can do that.’

For those of us who have been leaders in self-advocacy for a long time, we have important jobs now as role models and teachers. We can help people see that they can speak up and advocate and be leaders, too. We can share our experiences and talk about the history of the movement. We can share our opinions, but we also need to let others make the decisions.

Does the Self-Advocacy Movement still matter today?

We fought to close institutions. We fought to be seen as a person first. Today, we need a new call to advocacy. Even though we've come so far, just look at what happened in the early days of the COVID-19 pandemic. People with disabilities were not being thought of in emergency legislation. And some people with disabilities were denied care. More than ever, we need to speak up for ourselves.