How The Self Advocacy Movement Is Integral to the Success of the Neurodiversity Movement
|Ivanova Smith. Photo courtesy author.
[image: A Latvian-American person with short dark hair and glasses.
They are smiling and posing near a house on a shoreline, at dusk.]
With all the anti-neurodiversity stuff going around right now, I’m going say this: Intellectually disabled (ID) Autistics have been left out, that is true. But how? When people want to take away forms of communication like Facilitated Communication (FC) and Rapid Prompting Method (RPM), which is what anti-neurodiversity people want, that is is a form of silencing. That is how autistics with ID have been left, out because their form of communication has not been respected!
Saying AAC users’ communication is not real and is fake is what is really silencing people. By not supporting behavior as communication, that is how people are being silenced. By saying autistic people with ID can’t handle being at the table with the other advocates, that how they are being silenced.
By saying you have to use academic words and not use plain language materials, that is how Autistics with intellectual disabilities are silenced! By saying they can’t have thoughts ands feelings, and ignoring that they don’t like being treated like kids, that is how they are silenced!
By saying they need to be institutionalized and segregated and their labor is not worth the same as non-disabled people’s labor, that is how they are silenced! Being denied an education is how people are silenced! Yes, of many my peers have not gotten the education I had, and that is why I am now demanding they get the same! My mother should not have had to teach me to read to get me a better education! That is what wrong, that many are denied a good education based on not having support at home. It is wrong and it needs to end!
People who can’t read ever should also not be denied an education, that is how they are silenced. If you were never taught about your rights, you’re never going to know them and then eventually you won’t press to learn them. It sickens me that our education system is doing that, and only allowing some, not all, to learn about their rights! I hate this, and it never should been that way once we had IDEA, the Individuals With Disabilities Education Act! Nobody should have been segregated!
Another way ID autistics are left out is when we are mocked and laughed at for not knowing something, or are not using the right words. Getting made fun of is no fun and lots of people with ID and developmental disabilities like being positive, not negative.
It seems like big fish eating smaller fish is the history of the disability rights movement! They didn’t stop IDEA from segregating students, and they didn’t stop the isolation and restraints. All they did was pit disabled students against fellow disabled students. Just like in institutions.
Segregated special schools and neo-institutions are not the answer, but that is what anti-neurodiversity organizations like NCSA wants. They don’t advocate for communication, but instead ABA and restraints and institutions. That is awful and it is not going to help anyone. These orgs and people don’t speak for Autistics with intellectual disabilities!
These organizations want to focus on people with intellectual disabilities, but they ignore the self advocacy movement and autistic people with ID like me. We don’t want institutions! We don’t want segregation, we want freedom and autonomy and support in the community! They just need to see what the ID community has been asking for!
Another thing I would add is there are areas the ND movement can improve on! I don’t like idea of creating more rules. Conferences that make it so everyone is quiet are not accessible for intellectually disabled autistics who may need to repeat words to themselves, and use vocal stims. We may ask lots of questions, and may need to clap as a stim. By making all these rules they are leaving the more impacted autistics out! My friends who play in the Special Olympics with me and who are non-verbal are very loud and they clap. I fear they would not be welcome in many ND spaces.
And that is a problem. Autism accommodations are not just about keeping everything quiet. That leaves lots of people out and I am going be honest and say that is something ND activists that support those rules need to think about! That maybe a hard pill to swallow for my ND friends, but the rules about noise in conference can make a barrier with those who have more high support needs. Many autistics that need more support needs can’t sit still and be quiet, they will need to make noise or clap as stims.
I tried to talk to a prof who is a big ND activist that has a autism program at their college, and they wanted to enforce a no clapping rule and I tried bringing up the concern of autistics with intellectual disabilities who have clapping as a stim, and I got my head chewed off. That is a problem. It is one of the biggest reasons I am not going to that conference! Intellectually disabled autistics that clap and make noises and run around should be welcome too, not just quiet Autistics.
I am tired of vocal Autistics that use vocal stims being shamed and treated as less-than by ND conferences, and this needs to be called out! I am tired of it! I hope those who have more influence and power try to educate them, because they won’t listen to me.
Non-speaking autistic people with intellectual disabilities lots of time make vocal stims or clap as a stim, and that need be celebrated and accepted too: not just quiet autistic but all autistics. Even those who jump and hum in middle of a meeting! They all need be accepted!
This post is based on a Twitter thread by Ivanova.