Have you ever really thought about the seemingly simple and positive term “self-advocate”?

I first felt discomfort over it a few years ago at an awards dinner. A renowned national organization was handing out “Advocate of the Year” and “Self-Advocate of the Year” awards. The recipients of both awards were doing the same work. They were all effective. So why the distinction? Why have different awards for the same honor? Initially I just brushed it off as a way to honor more people. Now I see it as a polite form of segregation within our own community.

I was brand new to the disability world at the time. Still, I wondered, did I miss something? Do other groups make this distinction? Do advocates in the LGBTQ movement have different labels for hetero and homosexual supporters?

It’s cliché, but necessary to point out the dictionary defines self-advocacy as: the practice of having mentally handicapped people speak for themselves and control their own affairs, rather than having non-handicapped people automatically assume responsibility for them See also normalization. (Perhaps we advocates should contact for their archaic terminology … but that is another story.)

I’m a parent of a budding advocate who has Down syndrome. We became a part of the disability rights movement 5 years ago when he was born. Seeing as we’re still relatively new to this work – I sought out the wisdom of some more seasoned advocates to see where they stand on the semantics.

Dana Yarbrough is the Director of the Center for Family Involvement. She’s been in the disability field for decades. “We have coined self-advocate to take the place of ‘people with disabilities’ because it is easier and shorter to say and write and because we’ve made an assumption that everyone advocates for themselves,” said Yarbrough. “There was a time in the mid to late 1990s when people with disabilities wanted to be viewed separately from parent advocates and professional advocates. They wanted their own term coined; hence the term self-advocate.” She added, “Everyone, regardless of ability, is a self-advocate. If we make our own decision, we are captains of our own ships each day.”

Angela West is the Asian Cultural Broker for CFI. She’s passionate about disability advocacy, which stems from advocating for her own rights as a young woman with cerebral palsy. She told me she feels very strongly about shifting away from the word. “I mean, it’s one thing to advocate for personal things but another to see a bigger picture,” West said.

Jack Brandt is a Disability Policy Specialist for the Partnership for People with Disabilities in Virginia. He spoke at length about the term self-advocate in a keynote address at a TASH conference in Washington, DC. (TASH advocates for human rights and inclusion for people with significant disabilities and support needs. It is an international group that also operates on the state level.)

In his speech, Brandt said, “By labeling an individual as a ‘self-advocate’ we are attempting to say that they are a person speaking out and acting out on behalf of themself. Instead, we are unintentionally separating them and putting them into a category that they really might not even attribute to themselves and perpetuating paternalism by taking away their choice for what they really want to be.” Brandt talked about how frustrating it is for him to have to label himself a “self-advocate,” “professional,” or “family member” when he is all of those things and more.

Brandt said that as a group, the disability community tends to forget about the People First Movement. And he expressed concern that by us using “self-advocate” as much as we do, we could be creating a new term for others to misuse. He said, “When I hear educators, school administrators, state agency heads, legislators and others use the term “self-advocate,” I wonder what their intentions are. Do they see the full potential of each individual, or do they see each individual as something less? ‘Self-advocate’ can be used as a substitute for the ‘r-word’ if we are not careful about our intentions. Please don’t get me wrong, the Self-advocacy Movement has been great for the disability community, but we tend to bastardize this in the Disability Rights Movement.”

David Egan prefers the term advocate. Egan is a Joseph P. Kennedy Public Policy Fellow who has served the Ways and Means Committee on Capitol Hill. He is a Special Olympics Sargent Shriver International Global Messenger. And he works for Booz-Allen Hamilton. He is a 38-year-old man with Down syndrome who has been advocating since preschool. He’s as seasoned as they come.

Egan’s mother Kathleen told me their family’s first experience with the term self-advocate was at a conference where David was a speaker. She said he wanted to attend the sessions with others and someone told them he needed to attend with the self-advocates. “But David wanted to listen and participate in general session and not be segregated out because he has a disability. David sees himself as a national and international leader as an advocate in the disability field.” When it comes to awards both Egan and his mother feel it sends the wrong message when separate awards are given to self-advocates and advocates who are doing the same work – advocating for ALL.

We know that language evolves. Perhaps it’s time to cycle the “self” out of self-advocate and usher in a new era. What do you think?

2 thoughts

  1. Wow, I have never given much thought to the term self-advocate. It really made me pause for second and reflect. Thanks for the opportunity to become even more aware of just how powerful words can be. Wonderful piece, Erin.

  2. Really thought provoking. I have never given it much thought but it is interesting how the term does indeed do what we don’t want to do and that is segregate.

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