Noted non-binary and autistic blogger Mel Baggs passed away April 11 in Burlington, Vt., at age 39. During their lifetime, Baggs wrote extensively about life as a person with non-verbal autism. Their eight-minute 2007 film, In My Language, later became the subject of several stories on CNN.
Baggs posted a YouTube video in 2007 that detailed their life and sought to dispel misconceptions and prejudices about people living with autism. The video went viral and helped dispel the notion that people like Baggs were living a “ballast life.”
“Ballastexistenz is a historical term that means ‘ballast existence’ or ‘ballast life,’ that was applied to disabled people in order to make us seem like useless eaters, lives unworthy of life,” Baggs wrote on their blog. “I knew when I started this blog that this was how many people perceived me, but I have since experienced levels of discrimination, particularly in the field of medical care, that would have killed me outright had I not had a strong disability community fighting for me.”
The film was a seminal moment for the autistic community. Friend and author Michael John Carley wrote on his blog about how Baggs taught “that so-called non-verbal folks were capable of having deep, internal lives full of intellect, care, sexual appetite, the ability if not potential to communicate, and most importantly, the soul that so many before denied Mel, and others like them.” At the time, Carley was managing the world’s largest membership organization for adults on the autism spectrum (GRASP) and said that Baggs regularly examined the group’s website “denouncing our decisions on what to link and what not to link, or critiqued some of the language I was using in my essays.” Carley describes the most painful part of Bagg’s criticism “was that sie (Baggs's preferred pronoun was) always right.”
Baggs was not without controversy. Several fellow students who attended college classes or a summer camp program for gifted teens with Baggs during the 1990s told Slate magazine sie “spoke, attended classes, dated, and otherwise acted in a completely typical fashion.” Baggs did not dispute the claims, but noted sie lost their ability to functionally communicate in their early 20s.
Baggs was indeed beset by medical problems throughout their life. Sie was diagnosed with autism at age 14 and received treatment for bipolar disorder, dissociative disorder, psychotic disorder, and schizophrenia, and later used a feeding tube. Baggs also used a communication device that utilized both typing and picture symbols.
Despite their myriad medical conditions, Baggs continued the fight to not just bring awareness to those living on the autism spectrum, but also understanding.
“Usually, when people assume things about me, they’re wrong,” Baggs wrote on their blog. “My life is complicated, and it does not follow the standard stories that people expect either of disabled people in general, or of people with my specific conditions.”