An obituary for @myceliorum, a titan of disability advocacy.

This is going to be long.

Amelia "Mel" "Voicy" Baggs, also once known as Amanda Baggs, was angry, and insightful, and changed the world through hir videos and writing and battle for hir own survival.

Sie told the truth about nonspeakers and Alternative and Augmented Communication users like Mel as humans with insight and feeling and thought, deserving of the fullness of dignity and every right afforded to every person.

Mel told the truth about a medical system that saw hir life, with hir high support needs & hir feeding tube, as a "ballast existence". Mel told the truth about how much sie adored the life sie had, and how fiercely sie always wanted and fought to get what sie needed just to live.

Mel told the truth about hir adoration of, and connection with, the natural world.

Mel told the truth about the power dynamics between those who are designated "helpers" - the great saviours, the arbiters of what is right - and those who are the helped - obligated to be grateful, to accept whatever crumbs they got.

Mel told the truth, right near the end of hir life, about personal care assistants in hir area being designated as a "non-essential service", and about how that might destroy hir or hir peer carer through neglect, fast and soon. We do not yet know if that is why sie died.

Because of Mel, so many autistic people, so many disabled people, so many nonspeakers, so many people with high support needs, had a vision of themselves as fully human, as beloved, as experiencing a life of wonder and fullness, as worthy of every fight for every good thing.

Julia Bascom, the current head of the Autistic Self Advocacy Network, has already written that this is what Mel meant to her.

If you were moved or changed by our last production, Helping Hands, if you saw autistic people more clearly and vowed to treat disabled and neurodivergent people differently, especially nonspeakers or people with high support needs - it is in part because of Mel. Mel changed you.

Here are some of the ways that is true:

Mel didn't coin the phrase "Nice Lady Therapist" but sie made terribly sharp points about them, which became part of our key working understandings of the sometimes-terrifying aesthetic & power of the helper. You can read one of hir pieces about them here: https://cussinanddiscussin.wordpress.com/2018/05/04/nice-lady-therapists-and-their-war-against-human-emotion-class-disability-and-culture/?fbclid=IwAR3GE_7S96m5bri0LWJCAFPln5dBBTeccYnM9VpcsT5_MaOT4_OGCl76ba4

Mel made the famous-in-disability-circles video "In My Language", about which sie wrote:

"The first part is in my "native language," and then the second part provides a translation, or at least an explanation. [cont'd]

[cont'd] This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not."

This video was an enormous influence on our development of, and direction of, Donna, our nonverbal character:

In an untitled piece in the anthology "Loud Hands: Autistic People Speaking", Mel wrote of the physical, visual language of hirself and another nonspeaker, of the language below words which was a transcendent, legitimate language delegitimised by speakers.

Mel wrote of the sublime companionship of speaking it with another person who understood.

In Helping Hands, when Donna typed, "One of my friends can’t type like I type, but in our reflections and refractions off each other, there is a conversation. [cont'd]

[cont'd] Maybe you know the feeling, of stumbling into someone who does more than tolerate, who delights, and in delighting makes you free." --

we gave Donna these words because of what Mel taught us.

You can honour Mel:

- by engaging in true mutual aid rather than pitying, paternalistic, conditional charity;

- by actively looking to hear what disabled people want and then giving it to us;

- by fighting back hard against everyone who thinks they can decide the quality or worth of the life of another;

- by never forcing anyone to sign a Do Not Resuscitate order;

- by voting for people who want to fully fund disability systems designed by disabled people;

- by destroying all institutions and fighting for full community integration and full autonomy for disabled people;

- by presuming that all people have competence and will and preference, no matter how they sound or move or look;

- by learning to love and respect Alternative and Adapted Communication techniques;

- by delighting in the wonder and the privilege of being alive.

Rest in power, Amelia Baggs. You’ve already changed the world.