I Did an Activism for Autism Hell Month

Content/trigger warning: filicide, Autism $peaks mention, fucking April

I fucking hate April.

April drains the Autistic community. I keep hearing stories of burnout, depression, more frequent meltdowns and shutdowns, and completely shot executive function.

I feel that. I’ve been pretty damn useless this month.

But I did do something for April as a middle finger to Autism $peaks. I went to an open mic and sang a song in Katie McCarron’s memory, prefacing it with the story of her murder. My amazing fiancee—she proposed after my performance, and yes, I’m incandescently happy about that, and of course I said yes—filmed it. So here it is, with a transcript. Before the filming started, I introduced myself with my stage name, Valkyrja, which is Old Norse for “valkyrie”. Even before that, I asked if I could take the mic off the stand; the MC jokingly gave me a hard time and my Autistic ass thought he was being serious. Anyway, here’s the video and the transcript.

Transcript:

…and you can call me Valkyrie if you can’t flip the “r”, or if you aren’t interested in Old Norse, or whatever. And the song I have chosen to perform tonight is actually…[sigh] in memoriam, so I’d like to give a little context before I start, if that’s okay. I cannot see jack with these lights; I don’t know if I’m getting a nod, so I’m just going to go ahead.

Okay, I need you all to imagine something for me. I need you to imagine that you have a condition that causes you to perceive and interact with the world differently from most people. And yes, it’s certainly a disability, but it’s mostly so because of the way society treats you. Got that so far? Okay. Now, I need you to imagine that a MASSIVE charity—supposedly—gets the director of the third Harry Potter movie to make a short film about what it’s like to live with this condition…and they don’t get anyone with the condition to be involved. What the fuck, right? They got the director of The Prisoner of fucking Azkaban to direct the thing and couldn’t get anyone with the condition to even be interviewed? What the hell, right?

Now…this is where it starts getting fucked up. Trigger warning for ableism and murder. So, I want you to imagine that a board member on the charity who does not have the condition says in front of her daughter who does, in this film, she wishes she could kill her daughter and then herself.

[Crowd “oooh”s]

But she can’t, because she has a normal child to take care of. Stay with me.

[Someone in crowd says “all right”]

Now imagine this film premieres. A woman who doesn’t have the condition but has a child who does sees it. Three days later, this woman murders her young daughter who has the condition. You’d make some connections in your head about this series of events, wouldn’t you?

THEY HAPPENED. The “charity” is Autism Speaks. The film is Autism Every Day, which premiered in 2006, and yes, they got Alfonso Cuaron, the director of Harry Potter and the Prisoner of Azkaban to direct, and yes, his name is fucking mud in the Autistic community right now. We hate that guy. And if you couldn’t tell by the way I couldn’t tell he [indicates MC, who was being an asshole earlier] was being an asshole, I’m Autistic as fuck.

So the young woman who was unfortunately murdered. Her name was Katie McCarron, and I would like to dedicate this performance of “We Are the Others” by Delain to her, may she rest in power.

[sigh] Okay, if I’m not gonna cry, I’m ready to sing.

I’m walking with Katie tonight,
She lives in the air that I breathe;
I can’t get it out of my mind
How you were left to bleed
Was it how you stim?
Or how you act?
I can’t believe
How she could act so violently,
Without regret,
But we will not forget

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)

As simple as air in your lungs
As simple as words on your lips
And no one should take that away
No one should argue this
Now with our heads up high
We’ll carry on,
And carry out,
And we won’t let them get us down,
Wear us out,
‘Cause we are not alone

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)

Normal is not the norm,
It’s just a uniform
(We are the others)
Forget about the norm,
(We’re the outsiders)
Take off your uniform,
(We are the others)
We are all beautiful,
(We are the others)

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)
We are the others (we are the others)
We are the others

 

Many thanks to my sole patron, Karina! If you would like to be as awesome as Karina, enjoy my work, and would like to support me, please consider becoming a patron of mine on Patreon: https://www.patreon.com/ARZinzani

Disability Day of Mourning 2018

Content/trigger warning: murder of Disabled people by their caregivers, violent ableism, mention of sick pet

Today is March 1. Disability Day of Mourning. Why is it that I never have anything poignant and impactful to say on the days when I really, really should?

Oh, well. Here we go anyway.

For those who don’t know, Disability Day of Mourning is a candlelight vigil held by several disability self-advocacy groups, including ASAN (Autistic Self-Advocacy Network, which is the organization that actually keeps track of the data) and Not Dead Yet, at which the names of all the Disabled people who were murdered by their caregivers are read. Vigils are held all over the United States, and there is also a virtual vigil that happens online. Speeches are also given, and poems are read, at least during the virtual vigil. One year, I contributed a poem I wrote and a video of myself performing Delain’s song “We Are the Others”.

I can’t go. My job has shitty benefits, including not enough time off, and my pay will be docked if I miss work. I need the money for vet bills; my ESA needs surgery. (She should be okay.) It’s not that relevant, but I’m experiencing a ton of internalized ableism due to my inability to attend such an important event; I feel like I’m a bad activist. More relevant, though, is what I felt when I listened to the list of names: “There are so many”. And this year, over 100 cases of filicide of Disabled people by their caregivers were reported. That’s 550 murders since the inception of DDoM five years ago. One disabled person murdered by someone who was supposed to love and accept them every three days.

But so many abled people don’t find this as horrifying as I do. They think that the lives of Disabled people are not worth living. They pity and sympathize with our murderers. They insist that our disabilities must have made our lives so hellish that our murders are mercy killings. They wail and whinge about how hard it must be for a parent to have a child who is Disabled and they would have done the same thing. This is one of the most egregious forms of ableism I know of: our lives are seen as more tragic than our deaths.

“But Mara,” I can hear the abled fuckwads saying, “what about low-functioning Autistic people? Their lives are tragic!”

No Autistic life is tragic; abled people just don’t fucking understand us. They don’t understand that functioning labels are arbitrary and useless at best, dehumanizing at worst. I’ve played this game on this blog before, but let’s play again. It’s called A Tale of Two Autistic People.

Autistic Person Number One:
-Can’t keep a living space clean
-Can’t drive
-Doesn’t know when she’s thirsty
-Has no sense of time
-Has screaming, self-injurious meltdowns
-Can’t always speak
-Can’t handle personal finance
-Stims when distressed
-Is frightened by eye contact
-Has difficulties with executive function

Autistic Person Number Two:
-Has a master’s degree
-Is a member of MENSA
-Is able to care for a pet
-Works full-time
-Is capable of feeding themselves
-Has won awards for writing
-Has an excellent memory
-Is a skilled musician
-Holds a rank of third-degree black belt in a martial art
-Always looks put together

Which person is low-functioning and which person is high-functioning? Surprise: they’re both me. “Low-functioning” denies agency; “high-functioning” denies support. And regardless of what bullshit functioning label we get slapped with, all of our lives are worth living, even in this rancid ableist garbage fire of a society. And that doesn’t only apply to Autistic people. Disabled lives are worth living, and on Disability Day of Mourning, we honor those lives that ended too early because someone who should have accepted them for who they were didn’t understand that.

Anyway, I’m not here to debate the finer points of eugenics. I’m here to, as they say, “Mourn the dead. Fight like hell for the living.” I couldn’t go to the vigil. But I’ll try to keep fighting.

Oh, and in case anyone is interested, here’s my poem. It is specifically about how harmful messages from Autism $peaks like their go-fuck-yourself horrendous video “Autism Every Day” directly result in ableist filicide. It’s called “Anthem for April”, but I think it’s appropriate now.

Don’t reduce me to the puzzle piece you find ugly and malign
And the part of me your narrow typical mind can condone
The puzzle piece I find ugly is the ubiquitous blue design
Alex Spourdalakis’ and Katie McCarron’s mass-produced tombstone

From its azure knobs and corners drips blood only we can see
And I am not a mysterious conundrum or tragic riddle to be solved
Set fire to the bigoted texts written about children like me
And know we grow into adults with internalized bigotry unresolved

I am dismissed as if eye contact with danger didn’t fill me with dread
You think your degree gives you the right to decide my identity
Not that nor a family member nor a psych class puts you inside my head
How many letters must follow my name before you will listen to me?