I spent some time this week getting ready for a training I’m giving at a conference next month. This conference will be disabled-run and largely disabled-attended. One thing I’ve been contemplating gratefully as I prepare is the amount of usual, obnoxious disability event stuff that will just not happen this time around, like people trying to push me into the ill-fitting self-advocate label. The word that people usually want to use to describe disabled-identified people working on I/DD issues is ‘self-advocate.’ When people call me that, I cringe.
Self-advocates, people with I/DD who know their rights and feel comfortable asserting them, are a crucial part of disability advocacy. Given a venue and the right supports, self-advocates can spread that knowledge and assertiveness through their communities, empowering peers to protect themselves from abuse and neglect and demand greater independence. Certain connotations have seeped into the idea of self-advocacy, though, connotations of advocacy initiated by people without disabilities, informal, advisory roles, and speaking from personal experience rather than expertise. All that means that the input of people who are labeled ‘self-advocates’ work on a particular project or with a given organization, their involvement is often treated as a luxury and is sometimes very quickly pushed aside when self-advocates’ voices become inconvenient for decision-makers without disabilities. None of those things fit my circumstances as a disabled law student, organizer, and occasional social media contractor and volunteer.
I initiated my own advocacy and connection to disability community. I decided to seek out Autistic community on the internet and help build it in Atlanta before law school. Along the way, I picked up skills and decided to make the significant investment of getting a J.D. I’m seeking out roles where the expertise I’m developing will carry weight. As my career progresses, I will want to move in the direction that most people do: into positions of increasing authority. These days, I have far more occasion use my skills than to speak from personal experience. I talk to talk about how to get eyes on Facebook posts for disability-related organizations or whatever the case law says about the matter at hand than my own life. The more I obtain skills, the more just talking about my personal experiences seems like an inefficient use of the time and effort I can devote to advocacy as compared to the other things I could be doing.
Still, that doesn’t make my identity unimportant. If we care about self-determination for disabled people, and peoples, we need to place more authority over disability issues in disabled hands. More of the decision-makers and problem-solvers have to come from within disability communities. We need strong self-advocates, but we also need terminology that accurately describes the Autistic person who successfully founds and manages a local advocacy organization or the person with Down Syndrome on staff who devises and runs trainings for members of the community. People like that aren’t especially rare these days. The term ‘self-advocate’ doesn’t fully capture what they are and do as experts, workers, organic rather than externally-selected community leaders, and potential role models for younger people with disabilities in their communities. We may need a new term to fit people like many I already know, like the one I want to become.
I wish I had one to propose, but, after turning it over in my mind for a while, I haven’t come up with a good answer. If you have one that you think might work, I would love to hear about it in the comments. Until then, I’ll keep wincing when well-intentioned people without disabilities call me a self-advocate at meetings at conferences. It will be difficult for me to say that I want to be called something else until I can offer up another term, a suitable and more accurate replacement.