How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
I’m autistic — and to be honest, I’m tired of parents of autistic kids dominating the conversation about autism advocacy.
Don’t get me wrong. I’m incredibly grateful that I grew up with two parents who simultaneously advocated for me and taught me self-advocacy.
What’s frustrating is when people just like my parents — who are raising autistic and disabled children, but who aren’t disabled themselves — are always the only go-to experts, over people who’ve actually lived with a disability.
When I’m reading about issues that impact the autism community, I want to hear from autistic people
I want an autistic person’s perspective on how to bring up accommodations in the workplace, or what it looks like navigating college classes as a student.
If I were reading a story on how autistic people can create accessible class schedules, I’d want to hear first and foremost from current or former college autistics students. What did they struggle with? What resources did they use? What was the outcome?
I’d be okay if the story also included sources like a college admissions counselor, someone working in a college disability services office, or a professor. They could round out the story by offering an insider’s perspective on what autistic students can expect and how we can best advocate for our needs.
But it’s rare to see a story like that. Disabled people’s expertise on our own lives is often overlooked and undervalued, even though we’ve spent years — and in some cases our entire lives — with our disabilities.
We are the ones who understand our community, our access needs, our accommodations, and our culture the best — but we’re often an afterthought in conversations about disability.
When I wrote about being highly empathetic as an autistic person, I interviewed autistic adults who wanted to dispel the myth that autistic people can’t be empathetic. I used my lived experience, and the experience of other autistic adults, to break down why many autistic people are mistaken as unemotional and lacking empathy.
It was an incredible experience.
Autistic people in their 30s and 40s have reached out to me to say that this was the first time they read anything about autism and empathy that took this approach, or was written by an autistic person instead of a parent or researcher.
This shouldn’t be out of the ordinary. Yet too often, autistic people aren’t invited to share their expertise.
Parents of disabled kids are important, too, and I do understand the need for resources specific to them
It can be really helpful to read about the best ways to help your kid navigate through the world with their disability. I just wish those resources also included disabled voices.
But wouldn’t it be incredible if a guide to working on chores with your child who has ADHD had advice specifically from adults with ADHD, who know and understand what it was like to be a kid struggling to remember that they have to wash the dishes twice a week?
Adults with ADHD have tips — from a lifetime of lived experience and treatment with their clinicians — and they know what may or may not work in ways that a parent who doesn’t have ADHD wouldn’t.
At the end of the day, when we empower people to share their voices and experiences, everyone wins.
Using disabled people as the experts on our lives and experiences also reframes the way we view disability
Instead of positioning disabled people as people who need help, and parents as experts who can help us, it positions us as advocates who understand our disabilities and needs best.
It frames us as people who can make active decisions rather than whose decisions are being made for us. It gives us an engaged role in our lives and the way narratives about disability (and about our specific condition) are portrayed.
Whether we’ve lived with our disabilities for our entire lives or newly acquired them, disabled people know what it’s like to live in our minds and bodies.
We have a deep understanding of what it looks like to navigate the world, to advocate for ourselves, to demand access, to create inclusion.
That’s what makes us experts — and it’s about time our expertise is valued.
Alaina Leary is an editor, social media manager, and writer from Boston, Massachusetts. She's currently the assistant editor of Equally Wed Magazine and a social media editor for the nonprofit We Need Diverse Books.