The dark side of advocacy

TW*/CW*: possible mentions of abuse, language.

When I first started with advocacy, I thought it was a great thing to do. I advocated for myself and I got results. As I got deeper (connecting with autistic people online and do online advocacy), I realized that it wasn’t all sunshine and rainbow. I realize now that advocacy has a dark side too. Too many times I see the voices of autistic people being silenced. And I can’t stand that. Too many times I see people deciding for autistic people how they should identify themselves (Person with autism, Person First Language vs. Autistic person, Identity First Language). When autistic people talk or just voice an opinion, it gets invalidated. In other words, they don’t want autistic people to talk at all. “People with autism don’t understand what TRUE autism is”, they say. “You’re too high-functioning or low-functioning”, they say. “You’re not like my child”, they say. “You don’t speak for my child”, they say. “You have no empathy”, they say. What should autistic people do then? Sit on the sidelines forever and just be grateful for people spreading misinformation on autism? Or mobilize and fight against ableism and abuse?

I joined advocacy to talk about the positive AND the negative sides of autism. But it feels like my voice and every voice of autistic people get drowned by Autism Martyr Parents™, experts and anti-vaxxers. Recently there was a local foundation that want to start an ABA (Applied Behavior Analysis, please Google it) therapy center. I am against ABA. I want to protest about that, but I can’t find anybody who can help me with the protesting. It’s very frustrating. It feels like my voice means nothing. Even my parents tell me to stop with the advocacy, because of the effect it brings within the family. I get mad when I see my autistic friends online get bullied and trolled. I get mad, because of injustices against autistic people. It feels like I’m in an echo chamber. Nobody is hearing me. I admit it, I am isolated, voluntarily and involuntarily. Advocacy was one of my passions, but it sucks. It doesn’t spark joy (as Marie Kondo from the Netflix show Tidying up would say). I’m left wondering: what else can I do?

*TW=Trigger Warning
*CW=Content Warning


2 thoughts on “The dark side of advocacy

  1. You’ve had a very rough time pushing for acceptance and I applaud you for that. From one autistic advocate to another all I can say is keep up the fight no matter what the pain you feel. I am a political party member and I advocate alongside people who have through mental and physical fights with authority to get heard. Being a real advocate isn’t like defying a bully and pretending that your not being hurt, you to physically push yourself and challenge them. Sometimes to extreme ways that can result in destruction. When the suffragettes fought for womans votes they risked their lives and were prepared to die to make their mission succeed.

    Liked by 2 people

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