As a part of the Autistic Self Advocacy Network’s 2024 gala, we have the honor to share and uplift our remarkable awardees’ words and their service to the self-advocacy and disability community. We will be sharing their remarks for the first few months of 2025.
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When I was a child, I was supposed to be a success story. I was good at learning, good at writing, and I loved science. I would go to college, and then I would become a scientist.
But that’s not how it turned out. Barely able to take care of myself, I crashed, hard, and had to be hospitalized twice. I couldn’t drive safely, couldn’t deal with workplace politics, couldn’t survive in a neurotypical world. I repeatedly tried to work, and repeatedly failed, until I had to apply for Social Security.
As far as society was concerned, I had grown up to be one of those disabled people. The ones you pity. The non-inspirational ones.
But Mel Baggs taught me that life with a disability is not second-best or inferior; it’s merely different. We weren’t meant to pretend to be non-disabled; we were meant to be ourselves. We shouldn’t be ashamed of needing help any more than a nondisabled person is ashamed that someone else has to do their plumbing or grow their food. Mel’s writing brought me much-needed perspective; if it weren’t for hir, I might still be trying to do what my mind and body were never designed for.
It was 2014. I had just begun to fully join the autism community, and I was simultaneously fascinated by the beautiful diversity of the autism spectrum and saddened by the extent of the damage done to us by the ableist world we live in. I knew that autistic people were routinely denied opportunities, targeted for harassment and abuse, and treated as second-class citizens. I knew there were people I would never meet because, in one way or another, that prejudice led to their premature deaths. Our community would be forever incomplete.
I wanted to remember these lost ones, so I decided to create a memorial website. I started gathering cases and writing a profile for each person. I still maintain that website—a blog called Autism Memorial.
One of the first things I found during my research was the list of people memorialized on Disability Day of Mourning. It was a much shorter list back then, but it painted the picture it still does today: disabled people often die because the people who are supposed to care for them—their family members—instead abuse, neglect, or deliberately murder them.
At first, I just helped add to the list of names; but after I had done that a while, I thought of offering to help ASAN create a second memorial site, this one for the Disability Day of Mourning filicide victims. They agreed, and we started work.
Now, every day, I check the news for new names and updates on old ones. For each new death, I create a post that gives basic information: Name, age, location; a photo, if I can find one. Sometimes that’s all there is, and the news doesn’t say much about who the victim was. But sometimes, there are little glimpses into the lives of our lost ones: she made her own jewelry; he liked remote-controlled cars; they liked SpongeBob; he had a notorious sweet tooth; her favorite color was blue. I gather these details about people I will never meet. I keep a database of information, cross-check, double-check, and line them up in neat rows. It’s work my autistic brain is well-suited for.
I have been told that it’s a sad task, and that not many people could do it because of the emotional impact of all those deaths. But I think it would be worse not to do it—to know that our lost ones were fading into the past, their names unremembered. This way, I’m not helpless. I get to make a difference; I get to use my mind to help others, which is what I wanted to do to begin with. Thanks to Mel and the autism community, I realized I never needed traditional success in the first place.
If you, like me, are saddened by the many disabled people we lose to early deaths, please know that you are not helpless. The very act of remembering them, as we do each year, serves to teach us that they mattered—that we matter—that our rights are worth protecting and our lives are worth living. Keep watching for opportunities to use the skills you have—the unique mind and body that belong only to you, and to no one else—to make your own difference. Together, we are an amazing, messed-up, confused, sad, angry, and absolutely wonderful community; and if we hold on to that defiant love we have for one another, each generation will make the world a better, more welcoming place for the next one.