Autistics Speaking Day is a perfect example of what the term “Nothing About Us Without Us” actually means. An Australia-based organization called the AEIOU Foundation proposed a “communication shutdown” on November 1st, 2010 to represent the supposed frustration autistic people face with communication. This meant spending an entire day off of social media. Autistic people found out about this, and found it to be very patronizing and missing the mark.
As you’ve seen, autistic people tend to find the internet to be a bastion of communication and comradery, a lifeline, even. Two autistics in particular, Corina Becker and Kat Bjørnstad, decided to take action and form a blog. They reclaimed the day to showcase the writings of autistic people. They also wanted to take a jab at Autism Speaks’s name, so it was titled “Autistics Speaking Day”. It’s now observed on November 1st every year.
Let me explain what “Nothing About Us Without Us” actually means. Many people do not seem to understand that. It was a term first used in Hungarian Labor organizing, then again in South African Apartheid protests, and eventually as part of the Disability Rights Movement. It is also ASAN’s slogan. What it does mean is that nothing about a group of people, in this case people with disabilities, should be done without their meaningful leadership. What it does not mean is that people with disabilities literally have to be involved with everything disability-related, including things where they are not in charge and are instead used as tokens.
People use “Nothing About Us Without Us” to justify working with harmful organizations, because they think the statement means they need to be at the table all the time with everything. In an ideal world, yes, this would be the case. But the reality is that many times, when we’re invited to the table, we get nothing but scraps. That is not meaningful inclusion nor leadership, and thus, it is not consistent with “Nothing About Us Without Us”. It also means when something is not done with meaningful inclusion, that the people the cause is about will speak up about it, even if they aren’t at the table. Especially if they aren’t, in fact.
In this case, Corina and Kat didn’t need to join the AEIOU Foundation’s leadership to enact the change they wanted from within. Instead, they formed their own thing where they were in charge and gave a mic to other autistic people. “Nothing About Us Without Us” is inherently a saying of protest, of revolution, and working from within is not protest. It doesn’t mean never try negotiations, just that negotiations are not required for it to be true.