“Wait, is THAT what Self-Advocacy is?”: Reflections on Self-Advocacy

The term “self-advocacy” is one I’ve seen thrown about quite a bit in regards to autism (and disabilities as a whole) and it’s one I’ve heard not just on social media, but all my life. However, it’s a term that I’ve found to have constantly changing definitions and applications, and recently, I’ve found out that there’s far more nuance behind this term than I could have possibly imagined.

Growing up, whenever I heard the term “self-advocacy” or “self-advocate”, it was always in the context of one of my parents, usually my mom, telling me that I’d have to fight for my rights, to fight to get this or that or whatever, because not only would I constantly have to struggle to get the things I need and want from a world that doesn’t understand me, but that, and she emphasized this quite a bit, “she wouldn’t be around forever”. From a young age, my mother had always been fighting with people to get me what I needed, whether they be doctors, teachers, administrators, you name it. She’d always been fighting on my behalf to give me the support I needed. But she told me that she wouldn’t be around forever, that one day she’d be gone and she wouldn’t be able to do this for me anymore, and that I’d have to learn how to fight for myself, to advocate for myself so that I can get the things I need and want out of life.  And that was where my initial, and longest-standing understanding of “self-advocacy” came from: it meant a fight, a struggle, a constant push against an endless wave of people trying to screw me over and stop me from getting what I needed.

It meant sitting in at every IEP meeting I had since I was 9 and arguing with teachers and administrators  about my own education and demanding that I be heard and treated with respect. It meant talking to therapists and medical professionals and people I didn’t even know what they did about my condition and laying out explicitly what I needed and fighting and fighting until I had my needs met and I was treated with the same respect and dignity afforded to those around me. It meant putting my foot down and going “I am not leaving until I get what I deserve”. And most of all, it meant doing this all my life, from the time I was in elementary school all the way up to college and perhaps even beyond that. Perhaps I’ll still have to advocate for myself in this way once I get into the job market and demand to have my needs met by my employer, that I get treated with the same dignity and respect afforded to all other employees.

But there was another definition that I was met with from a young age, and it came not only from my mother, but also my aunt who was a teacher. I was told that to many people, I’d be the first autistic person they ever met, that I’d have to impart on others an understanding of what autism was, and that in other cases, I’d be people’s lifelines towards understanding other autistic individuals.  In this instance, “self-advocacy” meant that I had to tell people about my condition, that I had to be a bona fide spokesperson for autism. It meant talking to parents of autistic children, coming into classrooms to talk about my condition, talking to other people my age from classmates to friends and trying to get them to understand what it was, dispelling common myths, and perhaps most of all, trying to basically browbeat those around me into understanding that while I had autism, it didn’t mean I wasn’t a person with thoughts and feelings, that I still deserved to be treated with respect and dignity the same as anyone else. In this instance, “self-advocacy” was advocating my condition and my personhood.  As a side note, perhaps doing this form of self-advocacy all my life is why I chose to do this blog: because I’d been doing this for so long and so much that it just came naturally to me.

These two forms of “self-advocacy” were, for a long time, what I assumed self-advocacy was as a whole: a fight for the self, myself to exist in the world, to get access to the things I both want and need to function in the world, and to affirm repeatedly that I was, at the end of the day, a person like everyone else who deserved to be treated with dignity, respect, and understanding.  It was this understanding of “self-advocacy” that I took with me when I founded The Tism and created those shirts and made those blogs: I thought that what I would be providing would be just another way for autistic people, in some form or another, to be heard,  to be able to advocate for themselves and make their demands known.

What I did not anticipate however, was that through attempting to expand my business and engage with the autism community at large, that I would gain an entirely new understanding of what “self-advocacy” meant.   For context, growing up, I never really engaged with the “autism community” as a whole. I never went onto forums like Forbidden Planet and I never went to many conferences (sans 1 or 2 but they were mostly hosted by parents of autistic individuals).  I say this because this engagement with the autism community would be my first serious attempt at engagement, and it is through there, through the various autism-related hashtags and accounts and movements, that I would gain a new understanding of what “self-advocacy” meant. It wasn’t just a personal, contained fight, but a community-wide movement, a struggle, a protest, a campaign to be heard, to be respected as individuals, to fight for our rights as people, disabled people at that.    It was then that I quite literally said, “Wait, that’s what self-advocacy is?!?” (hence the title).

It may sound foolish to say that such a thing was shocking to me, but even as I’m typing, I still find it quite surprising, given that I had never heard of such a widespread movement until very recently, and even now I’m attempting to do further and further research into it so as to become more informed and become more active in my community (and make more shirts but honestly I think that’s become secondary).  In fact, it is gaining this new understanding of the term that inspired me to write this blog in the first place.

In closing, the term “self-advocacy” is one that I, as an autistic person, have found to have multiple, constantly changing, and increasingly nuanced meanings at various points in my life, and I think in a way, finding these new meanings have also reflected the changes in the ways in which I perceive my condition and experience the world as an autistic individual, with the more self-centered definitions coming in at a time when my perspective on autism was very limited and selfish, and the more complicated, nuanced, community-based ones coming in as my perspective grew broader and broader and I began to engage with not just those around me more, but also the autism community at large.

I hope that makes at least some sense, and I’m curious to see if any of you reading this could relate in any way to what I’m saying. If so, feel free to send us a message on our contact page or comment on our social media!

As always, thank you all for reading and have a wonderful day! Oh, and make sure to vote, because that’s the best form of self-advocacy there is right now!