‘How do I self-advocate?’

A reader asked me several months ago on Twitter how I self-advocate — how I get people to listen to me instead of the people around me, how I navigate environments where people look down on me because of my disabilities. I didn’t really feel that I could adequately answer this question on Twitter, because it’s a huge and complex issue, though I tried to point her at some resources. That said, I have been thinking about it, because it is an important subject: one so important that entire organisations and websites are built around self-advocacy.

To begin with, when I talk about self-advocacy, it’s critically important to recognise that I do so from a position of considerable privilege. I am white, I am articulate, I am middle class, I am extremely good at passing and fronting, I am highly medically literate. These are not traits that are available to all disabled people, and thus, what works for me when I self-advocate is not going to work for everyone — a Black autistic teen seeking care at a local clinic won’t be treated like I am at Kaiser, and to pretend otherwise is deeply disingenuous.

That’s why it’s so important to read about the experiences of numerous different people with self-advocacy, to learn more about how others approach it and how others fight to be recognised. That information can be tremendously helpful for people who are trying to find a balance when it comes for speaking for themselves and making sure they are heard and respected. My words alone aren’t and can’t be a magical guide to solving access problems and patronising treatment of disabled people.

When I advocate for myself, my focus is on getting people to talk to me and relate to me as a human being. Unlike disabled people with aides, interpreters, and other assistants, I have the advantage of interacting one on one with people; people can’t avoid engaging with me directly by turning to the people who help me manage tasks of daily living. One of the recommendations I make to nondisabled people asking for advice on how to interact with people who have aides, interpreters, and so forth is, of course, to talk to the person, not the assistant; and that’s something disabled people can stress too.

There’s a great scene in The West Wing when Marlee Matlin as Joey Lucas grabs Josh and forcibly turns him towards her, showing him with body language that while her words may be coming out of Kenny’s mouth, he needs to be looking at her and paying attention to her, because she’s the one he’s talking to. While he might not know ASL, and Kenny is interpreting as a service to him, he’s conversing with Joey.

Many people, particularly nondisabled people, need to be reminded that if someone is using an interpreter, facilitated communication, or augmentative communication, the person who is speaking is the disabled person, and that is the person who should be addressed. Disabled people are also more likely to be talked about or talked over rather than talked to, and this is something I experience (though to a lesser level than with other disabled people and disabilities). It’s okay to assert yourself and say ‘please address questions and comments to me.’ Or ‘it makes me uncomfortable when you talk about me as though I am not here.’ Or ‘this question could be more quickly answered by addressing me directly rather than talking with the person standing next to me about how to get my wheelchair into the venue/accommodate my need to sit close to the bride’s table so I can hear the toasts/etc.’

Know your rights and be specific. Disability self-advocacy can be an upward slog with people determined to tell you that you don’t ‘deserve’ accommodation or that it would pose an undue burden to provide. Be ready for people to be rude to you, so that you can calmly shoot facts back at them. Rather than saying you ‘need an accessible venue,’ explain that you need, for example, a ramp so you can get in the front door, a bathroom with wheelchair clearances, and clear aisles and walkways so you can move around inside. Tell people you’re happy to wait while they check to confirm accessibility, and to provide advice on access standards if they’re not familiar with them. Yes, it is frustrating to have to educate people when all you want to do is make plans, and no, you shouldn’t have to do that, but your willingness to self-advocate is going to help other disabled people in the future.

Make it clear that you want to be included in events, meetings, and other situations, especially if they’re about you. Ask for documentation and any information that will be discussed ahead of time. Play a proactive role. Do your research — if your parents and teachers are meeting to create an IEP, take a look at sample IEPs online and ask other disabled students about their accommodations so you can have a better idea of things that might help you. If you come prepared with a list of accommodations, it’s much harder to exclude you from decisionmaking roles.

Don’t be afraid to ask people to restate, slow down, or explain things for you. You have a right to understand and follow what is going on, regardless as to what other people think about it. If you are uncomfortable with the direction a conversation is taking, you can step in to stay that you want to redirect the focus or bring up a specific issue that’s not being addressed.

As you’ve probably noted, many of these self-advocacy skills from my own experience rely heavily on being able to communicate verbally, using mainstream and ‘acceptable’ communication methods. Things get more complex for people who communicate in other ways, and many of those people write, make videos, and create other communications to provide information about how they advocate for themselves and navigate the world. I highly recommend checking them out if you want to get a broader idea of the spectrum of self-advocacy.