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

What term should we use when we are talking about ourselves or the power that we feel when we speak up for the issues that are important to us and others with developmental disabilities: Self-advocate or Advocate?

This question has been raised over the last few years within the developmental disabilities community, sometimes sparking strong emotions. The term has been used since the mid ‘70s to describe people with developmental disabilities who speak up for themselves on issues that are important to their lives. Self-advocates and professionals within the community have many different ideas on the continuing use of this term. Some have taken the position that this term should not be used. It has been suggested that the term simply be replaced by the word “advocate.”

“The term is ours and is alive and well. Use it with pride!”

The Self Advocacy Resource and Training Center (SARTAC), a project of Self Advocates Becoming Empowered (SABE), was asked to weigh in on this discussion by the Administration on Community Living in January 2019. We posed this question to 26 self-advocacy leaders from the SARTAC Advisory Committee and the SABE Board of Directors.

This article describes our group discussions, the topics we explored and lessons learned, along with my thoughts as director of SARTAC. The article is the synthesis of our collective voices, our mutual respect of each other, and our contributions to the movement.

When the discussion began, it was clear that each person had a very personal self-advocacy journey. Though we do share a basic understanding that self-advocacy is “speaking up for myself,” it took a few questions to help the participants find the true beginning of their stories. Each added more to the discussion when asked, “What does self-advocacy mean to you?” That was the key to everything – telling those personal stories.

People, like movements, have many stories. Many group members talked about being or feeling separated from family and friends because of the way they looked, acted, or by how long it took them to learn. Many talked about joining groups as a way to be part of their community and be known as individuals. To change attitudes, we shared who we are and what we want. We showed how we are more the same than different. When we listen, we are open to finding the answers.

SABE board members, SARTAC advisory members, staff and allies agreed this is an emotional issue for everyone who provided comments. Our discussions revealed that the history of the use of the term self-advocate is a powerful one. It signifies the beginning of the Self-Advocacy Movement for people with intellectual disabilities. Our sisters and brothers claimed the term in the United States at the first self-advocacy conference in Oregon in 1976. The excitement and power of self-advocates claiming the term can be seen in video footage of the People First conference .

This term is about our voices. It is about speaking for ourselves and not having others speak for us. The term is about our civil rights. It is about people who wanted their freedom from the institutions. We wanted to speak for ourselves and not have others speak for us.

We are the ones who chose the term. We are the ones to decide what our movement will do and if we use the term self-advocate. Beyond speaking for ourselves, the term is about being a part of the Self-Advocacy Movement. It is like the term “foot soldiers,” used by Black leaders in the Civil Rights Movement. They used the term for their leaders who stepped up and made a difference in self-advocacy.

Some people use the term as another label for all people with a developmental disability, but this is not correct. Not all people with developmental disabilities are a part of the Self-Advocacy Movement. Some do not understand the history of the Movement. We do not think that all people with disabilities are self-advocates. To claim the term self-advocate, you must understand our history and the Self-Advocacy Movement. You must also have developed your voice to speak up for yourself.

It is our responsibility to stay active in the Movement. Otherwise, we will lose the rights we have and never gain additional rights. Self-advocates have to fight for rights that have already been won, and they are always at risk of being taken away or weakened. In the spirit of our commitment to civil and human rights for all people with disabilities, we claim our right to choose how we refer to our advocacy work. And we want everyone to recognize that our use of the term self-advocate is an inclusive and powerful one.

In the spirit of our commitment to civil and human rights for all people with disabilities, we acknowledge the right to choose how you refer to your advocacy work. We also want you to recognize that our use of the term self-advocate is an inclusive and powerful one.

The employment of many of us as professional self-advocates has also created a tension in the self-advocacy community to remove “self” from self-advocacy. This perhaps has occurred due to our need to be accepted into our workplaces and the developmental disabilities community as professionals. We do not think we must give up the term to be powerful as a professional.

The “self-advocate” term is inclusive of the personal and collective power of the Self-Advocacy Movement and the broader Disability Rights Movement. We have power when we stand together for our human and civil rights. It is a term that is personally meaningful to us as we awaken our voices and learn skills that give us power to make our lives better. The term is ours and is alive and well. Use it with Pride!