These are the original answers I wrote for the Spirit of Self-Advocacy Twitter chat as part of the Autistic Self-Advocacy’s annual gala. They were a little too long to fit Twitter’s character limits, so I decided to post them here instead. At the very bottom, I’ve also included the tweets I ended up posting.
Q1 What is self advocacy, and why does it matter to autistic people? #ASANGala
Self-advocacy is about taking control of our lives back from the people who would like to have that control. It matters to autistic people because our experiences, opinions, and wisdom are dismissed by neurotypical society. When this happens, we are seen as things to be controlled and exploited, rather than people with full and worthy lives.
Q2 How do you practice self-advocacy in your daily life? #ASANGala
Setting boundaries, not waiting for permission to do things other people would not need permission for, and, honestly, ignoring unjust rules. There is a set of rules for neurotypicals, and then another set of rules for Autistics and other neurodivergent people, and the rules we have to follow honestly just aren’t fair most of the time.
I have a strong moral code that doesn’t always overlap with the rules neurotypical society uses to exploit us, and when push comes to shove I’ll trust my ethics over rules designed to oppress me.
Setting boundaries and not waiting for permission to do entirely mundane things are two examples of the kinds of things neurotypicals are allowed to do without consequence but we’re punished for. I really appreciate @QueeringPsychology’s approach to setting boundaries (among plenty of other things), as well as the work of @roscialskills.
Q3 How can people learn to be self-advocates? #ASANGala
Experience. I was thrown into self-advocacy without even knowing what it was very early on — I wasn’t diagnosed until midway through high school, so I spent a lot of time as a kid advocating for myself because what I needed wasn’t inherently given to me.
Even my diagnosis was something I had to advocate for. I was doing really badly in school and couldn’t understand my friend group, and as a result I was dealing with really intense mental health consequences. Once I had my diagnosis, I was able to access services I needed, and strengthen my bond with my neurodivergent community.
Later, after my first year of college, I was lucky enough to attend ACI. ACI helped me put a name to the skills I had been using for over a decade, and showed me things I could fight for that I didn’t even know existed.
Q4 What are some examples of self-advocacy that you have learned from? #ASANGala
So many that I can’t even begin to list them. Honestly, though, the single greatest example I’ve learned from is Mel Bagg’s (may hir memory be for a blessing) essay “The Meaning of Self-Advocacy” in the Loud Hands anthology. That essay made me realize that what had been characterized as acting out or bad behavior had actually been me advocating for my needs all along.
Q5 How can self-advocacy spaces do a better job at making our work welcome to multiply-marginalized people? #ASANGala
Put those people in charge and give them/us the money & resources we need to do our work. Seriously. I’m lucky enough that my current project, the T-House (a community space for transmascs) is funded by my position at the QRC, but that’s not the norm. I’ve tried to get T-House off the ground so many times since high school, and it was only when I was being paid for my time and given a budget that I was able to make it work.
Q6 We want to take a moment to highlight the work of disabled people of color. What are some examples of anti-racist disability work? #ASANGala
Well, TL Lewis (@TalilaLewis on twitter) has changed my life for certain. TL’s work, both with HEARD and more generally, has taught me so much and made me realize how vast and expansive racism-ableism can be. On a more personal level, Noor @SnoringDoggo has been a huge influence on my life as well. When we met at ACI, I realized there was so much more to self-advocacy than I thought. This was in part because so much of what I had learned up to that point was written or spoken or done by white people. Noor helped me realize that as disabled people of color, we have a different perspective and different experiences and different barriers than white Autistics do, so sometimes we need to use different strategies or messaging to get what we need.
Q7 What are some good ways to support self-advocacy for people with intellectual and developmental disabilities? #ASANGala
Same as my answer to Q5, honestly. It’s genuinely about power and resources in the end. Pass the mic, give back to marginalized people the power and resources that were stolen from us, and you’ll see things get done that you could never even begin to imagine.
Q8 What have you been doing in advocacy this last year? #ASANGala
You want a laundry list? Joking, but there genuinely has been a lot going on this year. These are the things I’m most proud of though:
I’m a member of the Resource Centers and Programs United subcommittee of my college’s Associated Student Council, and I’ve been able to use that position to redirect resources to marginalized students. As a committee, we helped build loaner laptop and food card distribution programs, created inclusive community guidelines for on-campus programs, and now are working to make sure resource centers and programs have updated & safe/comfortable spaces for students to visit once it’s safe to come to campus again.
I also mentioned earlier my program the T-House, which is funded and run through the QRC. This is a community space & event series for transmasculine & masculine of center people (regardless of specific identity — language is colonial and words are fake). It’s still getting off the ground, but I’m really excited about the foundation we’re laying for future semesters.
Q9 Maria Town talks about her #AdvoCAT, and how she is a great example of self-advocacy. How does your pet self-advocate? #ASANGala
So, I have two dogs and an ever growing number of snails & slugs (ask me about them some time, terrestrial mollusks are a special interest), and they are all EXTREMELY good at self advocacy. My dogs are very upfront about what they need, even without access to English. Their barks and habits and behaviors are very easy to understand once you catch on, and it helps us (they live with my mom right now) take care of them.
My snails and slugs are certainly a lot quieter than my dogs, but no less effective at advocacy. When conditions in their tanks aren’t right, snails will estivate or hibernate (depending on if it’s too hot/dry or too cold/wet). When I see my snails estivate, I know that I need to adjust something about their tank conditions.
Here’s what I actually ended up responding with, due to Twitter character constraints:
#ASANGala A1: Self-advocacy is about taking control of our lives back from the people who have power over us. It matters to Autistic people because our experiences, opinions, and wisdom are dismissed by neurotypical society, which makes it easier to exploit our communities.
#ASANGala A2: Setting boundaries, not waiting for permission to do things other people would not need permission for, and ignoring unjust rules. Autistics are punished for things NTs are rewarded for. @QueeringPsych and @rsocialskills have helped me learn how!
#ASANGala A3: Experience & training. I wasn’t diagnosed until HS (& I had to fight for that), so I spent my childhood self-advocating without knowing it. In my first year of college, I was lucky to attend ACI, which gave me words for what I was doing & new ways of doing it.
#ASANGala A4: So many that I can’t even list them, but the single greatest example I’ve learned from is Mel Bagg’s (may hir memory be for a blessing) essay “The Meaning of Self-Advocacy”. That essay made me realize that what had been seen as acting out was actually self-advocacy.
#ASANGala A5: Put those people in charge and give them/us the money & resources we need to do our work. Seriously. Multiply-marginalized self advocates are just as good at advocating (and tbh usually better) than advocates who face fewer barriers. We know what works.
#ASANGala A6: @talilalewis’ work both with HEARD and more generally has shaped how I understand racism-ableism. Check out @behearddc if you haven’t. Meeting @SnoringDoggo at ACI helped me see the way racism-ableism works- we have different barriers, & need different strategies.
#ASANGala A7: Same as my answer to Q5, honestly. It’s genuinely about power and resources in the end. Pass the mic, give back to marginalized people the power and resources that were stolen from us, and you’ll see things get done that you could never even begin to imagine.
#ASANGala A8: There are a number of projects I’m proud of, but the biggest is the T-House: a transmasc-run & transmasc-centered community gathering space and event series. Still getting off the ground, but I’m excited to see where we can go with it! https://t-house.carrd.co/
#ASANGala A9: My dogs are very good at communicating without words. Their barks, scratches, and behaviors are just as effective as spoken English at communicating their needs. Same with my snails — less loud, but if they estivate that means I need to pay more attention to them.
Thank you so much to the organizers at ASAN for putting this event together (and for mentoring me through my Autistic adulthood), and my best wishes go out to you all that the rest of the Gala goes just as wonderfully!