Amanda (Mel) Baggs ND movement advocate R.I.P.

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“may came home with a smooth round stone
as small as a world and as large as alone.”

— e.e. cummings

Mel Baggs, one of the pioneers of the neurodiversity movement, died over the weekend. Sie was 39 years old. The autistic community and wider disability community are worse without hir in them.

I learned from Mel Baggs that in some folklore, stones with naturally formed holes have mystical powers. These stones go by many names — Adder stones, hag stones, and druid’s glass are a few. Peeping through the hole in the stone can grant the viewer the ability to see through illusions. There are a lot of illusions in disability service provision — The illusion of safety. The illusion of community. The illusion of self-determination. Words in disability service and policy spaces are frequently used to describe things in a way completely counter to what they actually are. Mel called these “snake words.”

Mel wasn’t willing to put up with snake words. “It’s important to know that even if you can’t always see the truth, there is a truth to see,” sie wrote. How do we get people to see through those illusions? “I don’t know. I keep trying. I keep hold of my rocks with holes in them and I keep trying, I keep trying, I keep trying.”

Much of my career has been dedicated to helping people see through illusions, helping people see what snake words really mean, and what they really are. Being a disabled writer who writes about disability service provision and policy is, in many ways, like trying to be a hag stone. I can’t force anyone to look, but I can help them see. Mel Baggs’ writing helped shape my desire to do it. I keep trying too.

Mel wrote about death a lot. “People’s death is deeply personal and for lack of a better word, sacred. And people’s own death belongs to them.” Mel’s death does not belong to me. I will not try to imbue it with meaning. Mel’s death is hir own.

Mel Baggs is survived by hir writing, hir chosen family Laura Tisoncik, and a community of friends who loved hir very much. May hir memory be a blessing.

Mel Baggs, a disabled writer and artist who became an influential champion of a powerful idea — “that all people are valuable” — through candid blog posts and videos that brought them to the fore of the neurodiversity and self-advocacy movements, died April 11 in Burlington, Vt., at age 39

In blog entries, YouTube videos, poems and watercolors, Mel Baggs documented and explored a personal identity that eluded easy labels. “Usually, when people assume things about me, they’re wrong,” they once wrote. “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.”

Their main focus was on promoting self-advocacy for people with developmental disabilities. Mx. Baggs was autistic and nonspeaking — they used a communication device for most of their adult life — and also used a feeding tube, a cane or wheelchair, and supplemental oxygen to treat frequent lung infections. Seizures remained a lifelong challenge, and severe muscle weakness and an adrenal condition led Mx. Baggs to drop out of college and kept them in bed for months at a time.

It did not keep them from building an independent life, devoted in large part to upending what Mx. Baggs described as “the idea that there is only one kind of real language, real communication, real person.” Their writing and videos placed Mx. Baggs at the vanguard of the neurodiversity movement, which emphasizes the diversity of human experience and minds and rejects the idea of a single “normal” condition.

“Sie fought unceasingly for the principles that all people count, regardless of type or degree of disability,” said Lydia X.Z. Brown, a disability justice advocate and writer, “and that all people deserve to exercise their own agency and to receive necessary care and support, even and especially if others do not understand why. Mel also emphasized constantly that it was most important for hir, and others, to be regarded and recognized as a whole human being rather than reduced to being only the relevant labels or categories.”

Mx. Baggs spoke at conferences on developmental disabilities, worked with Massachusetts Institute of Technology scientists researching autism and — although they were not Jewish — advised Rabbi Ruti Regan, a visiting scholar at the Harvard Law School Project on Disability, on bar and bat mitzvah rituals for adolescents with language disabilities.

Mx. Baggs wrote frequently on their blog Cussin’ and Discussin’ (its tagline: “Mel being human in a world that says I’m not”), publishing poems, photos of their beloved cats Fey and Igor, analysis of their experiences in institutional care settings and reflections on the sexual abuse they said they faced as a child.

But they were perhaps best known for a 2007 video, “In My Language,” which showed them speaking in their “native language” — not through words but through actions, including waving their hands, rocking back and forth, rubbing a laptop and running their fingers through water. Mx. Baggs went on to offer a voice-over “translation,” explaining through a computer that they were in a “constant conversation” with their environment.

“The way I naturally think and respond to things,” they said, “looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all, but it is a way of thinking in its own right. … Only when the many shapes of personhood are recognized will justice and human rights be possible.”

Mx. Baggs’s nearly nine-minute video drew more than 1 million views online, as well as coverage from media organizations such as CNN and Wired. But much of the public response focused on autism and seemed to treat Mx. Baggs as an object of pity, trapped in their own world. Such viewers missed the point, Mx. Baggs said, writing in a CNN essay that the video “applies to anybody who gets written off because their communication is too unusual,” including “signing deaf people” and schoolchildren who aren’t fluent in English.

“We perceive the world differently,” Mx. Baggs had previously told NPR. “We think differently. And we respond to the world differently. And that goes for all of us, not just some of us.”

Amanda Melissa Baggs was born in Mountain View, Calif., on Aug. 15, 1980. Their mother, the former Anna Lynch, was a respiratory practitioner; their father, Ronald Baggs, was an electronics engineer who designed equipment for high-energy physics experiments.

Mel, who later adopted the name Amelia Evelyn Voicy Baggs, grew up “with a complicated relationship to speech and receptive language,” by their account. They were raised in a rural section of La Honda, Calif., surrounded by redwood trees that became a fixture of their poetry and watercolors.

Mx. Baggs studied at De Anza College in California and Bard College at Simon’s Rock in Massachusetts before continuing their education through books. They soon emerged as a fiery online activist, notably through a website they created in response to an Autism Society of America campaign, Getting the Word Out, which Mx. Baggs viewed as perpetuating stereotypes about autistic people through its black-and-white photos and dour captions.

With the release of “In My Language,” some critics questioned whether Mx. Baggs had exaggerated or faked their disabilities — accusations that Mx. Baggs, and those who knew them from conferences and other events, fiercely denied.

“Sie had a tremendous influence on the commitment in the neurodiversity community that exists today, that this is for everybody, that nobody doesn’t matter and nobody doesn’t have rights,” said Cal Montgomery, a disability rights advocate and longtime friend of Mx. Baggs. “Most of us do not live our values,” he added, “but Mel lived hir values as completely as anybody I’ve ever known.”

Mx. Baggs’s blogs included Ballastexistenz, named after a German eugenics term that was used, as Mx. Baggs put it, “to make us seem like useless eaters, lives unworthy of life.” Many physicians and nurses seemed to treat Mx. Baggs that way, family and friends said.

“For several years prior to her death, Mel was engaged in an escalating fight to convince a failing local support system that her life had value,” Anna Baggs wrote in an email. “It became more and more difficult to secure adequate assistance with necessary activities.”

Last year, Mx. Baggs moved in with a friend, autistic rights activist Laura Tisoncik, whom Anna Baggs described as Mx. Baggs’s “second mother.” Mx. Baggs had been increasingly frail after being hospitalized for the flu in March — they had tested negative for the novel coronavirus — and died at Tisoncik’s home in Burlington.

In addition to Mx. Baggs’s mother, survivors include two brothers and a grandmother.

Almost until the end, Mx. Baggs passed the time with crochet, sometimes making gloves and scarves that they put in plastic bags and left on park benches, accompanied by a note: “If you are cold please take these. I made them for you.”

The handicraft was a way to ease their mind, Mx. Baggs explained in a Ballastexistenz post, and was less physically demanding than painting and violin, their other hobbies. “It gives me something to do with my hands,” they said. “And I need things to do with my hands. I need things that are concrete, things outside the world of words, things that are useful, things that are beautiful.”

Mx. Baggs, a vigorous blogger, used the term “genderless” as a self-description. “I like that it just means lack of gender, and has no spoken or unspoken secondary meaning,” read a 2018 entry on the blog “Cussin’ and Discussin’: Mel being human in a world that says I’m not.” Many friends and admirers posting about Mx. Baggs’s death on social media used gender-neutral pronouns, while others used the traditional feminine ones.

Anna Baggs, Mx. Baggs’s mother, said the cause was believed to be respiratory failure, though numerous health problems may also have played a part.

Gender issues, though, were not Mx. Baggs’s major concern. Of more urgency was conveying that people who think and communicate in nontraditional ways are fully human, and that humanness is a spectrum, not something that can be reduced to a normal/abnormal dichotomy.

“There are many important parts of autistic culture that trace back to Mel’s writing and influence,” Ari Ne’eman, a disability rights activist and author, said by email, “but one of the most important is hir insistence that the neurodiversity and autistic self-advocacy movements include all autistic people, not just those who could talk.”

“In the early days (and sometimes still now),” he added, “there were lots of people who argued for advocacy only for certain kinds of autistic people, leaving people who couldn’t talk or who had the wrong diagnosis behind. Mel was one of the most powerful voices contradicting that.”

Mx. Baggs, who lived independently in Burlington until about a year ago, died at the home of Laura Tisoncik, an autism activist whom Anna Baggs described as Mel’s “second mother” and who had taken Mx. Baggs in as cascading health issues and problems with home health services made living independently impossible. Ms. Tisoncik (who emphatically rejected the idea that Mx. Baggs was faking anything), summed up Mx. Baggs’s core idea in a phone interview. “There are no unimportant people,” she said.

Mx. Baggs was concerned that autism awareness had become a trendy catchphrase, “whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.”

There were blog posts about hir father’s death, hir cats and the “snake words” used in the disabilities-services industry that sounded helpful to clients but, Mx. Baggs said, were actually harmful. (“Apologies to actual snakes,” one of these entries noted.)

Anne Corwin, a friend for 15 years, said one thread was that the world’s idea of normal is precarious.

“A major theme running through many of Mel’s writings (especially the ones describing harrowing experiences with abuse, institutional settings, and medical neglect) was: this could happen to any of us,” she said by email “It could happen to you, to your loved ones, and it will keep happening until we decide as a civilization to do better.”

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.