content notice: death, murder, filicide, death of disabled people, death of children, gun violence, Fire, suicide, ableism, ABA, murders of George Hodgins, Tracy Latimer, and Daniel Corby.
Content notice: person-first language, dehumanization, ableism, medical discrimination, academic discrimination
Content notice: institutionalization, deprival of rights, psychiatric violence, sexual harassment/assault, medical malpractice, involuntary treatment, guardianship, functioning labels, and a description of lobotomy.
you can’t tell
just from reading my posts
that i decided to stop speaking
there are circuits in my brain
stitched on a backpiece of linen mounted on steel frame
and two circuits here are important:
the one that makes language in my brain
the one that makes my mouth move
these are different but
both are needed to make my spoken words
i watched a friend recite his ASL poetry
hands flapping in rhythmic motion
in the middle of a blocked-off, art fair street in san jose
i sat with him and listened to his voice on his talker,
which he posted recently that anthem will pay for part of
(hopefully medi-cal will pay for the rest),
and wondered if i could ever be like that.
there’s a divide where someone forgot to make the stitches,
a divide where my mouth flaps endlessly
caught up in sounds that nobody else understands
where i know what i want to say
but i can’t say it
where i feel the words inside of me
but my mouth won’t make them
there are endless metaphors i could use –
if my goal was to make non-autistics more comfortable –
and that i won’t use because this isn’t about making anyone comfortable
i use the limited words i have
on the people i know don’t understand
everyone else gets the robot
(can i call myself a cyborg now?)
everyone else can still listen
i make rules
don’t look over my shoulder
don’t try to guess what i’m gonna say
i’m 20 years old
treat me like an adult
(not the one from the art fair in san jose)
told me a story about an autistic man who,
when given a letter board for the first time at 20,
spelled out F-U-C-K Y-O-U.
that’s what you get for not presuming competence
for making an adult watch PBS Kids
just because they can’t talk.
“can you talk? say something!”
yeah, how about,
go fuck yourself!
i went to a party and said hello to everyone on my phone,
and most people didn’t blink.
one guy kept asking,
“what’s wrong? are you sick?”
and i kept telling him,
it’s a long story.
because where do you start,
when a lifetime of meltdowns and overloads and social hell,
when a lifetime of sensory seeking,
when a lifetime of useless knowledge & special interests,
when a lifetime of being autistic
(on top of all the other illnesses and trauma)
begins to make sense?
and then slowly,
you begin to realize that it’s not you,
it’s the rest of the world,
and it’s not your fault for needing help,
and it’s not your fault for being different,
and it’s not your fault for being autistic.
there are no rules here
only people refusing to understand
and when there are no rules
there is only room to grow.
I wrote this from the iPad I bought specifically to use as an AAC/text-to-speech device. The exact app I use is called Speech Assistant and is available for Android and iOS for $10. It’s a great customizable app for someone who is able to type and use text phrases without pictures.
I wanted to write about being non/semi-speaking because it isn’t apparent from the way I write that I don’t speak. This is true of many people who use AAC. It’s often also a complaint in autistic circles in general: that non-autistic people don’t think we’re autistic because we look too “normal” from the way we type or write online. (The difference between online communication and in-person communication is massive, to say the least.)
I still can speak but I choose not to. It’s so draining to have to speak and if I have to choose between speaking and ending the day too tired to do much of anything and not speaking and ending the day with energy to enjoy myself, I’d rather have energy. I like communicating. People are nice to be around (some people; some of the time). But speaking is hard.
And, finally, I learned a lot about AAC and being autistic as a participant in the Autism Campus Inclusion program sponsored by the Autistic Self-Advocacy Network. I spent a week in DC with about 20 other autistic people and I was so impressed by how quickly we bonded as a group (especially since autistic people, by nature, are not very social). This poem is for everyone at ACI 2018 – you know who you are.
Content Notice: This post contains discussion of mental health treatment, ableism, saneism, mis- and maltreatment of disabled people in a medical setting, and lack of medical autonomy.
Content Notice: This post discusses transphobia, misgendering, embyphobia, binaryism, and discrimination against gender non-conforming people.
Content Notice: This post discusses ace/arophobia, bi/pan/poly/queerphobia, general anti-LGBTQ+ bigotry, and exclusionist tactics to “close off” queer communities to ace and aro people.
I’m donnie. I write things. Sometimes I write long things. Sometimes I knit. Sometimes I sell the things I knit.
I use they/them and xe/xem pronouns and I alternate them when talking about myself. I won’t, however, use both sets in the same paragraph because every time I see that, my brain decides to take the rest of the day off and I’m left high and dry. (I’m only sort of joking.)
This is all a very unimpressive introduction. I have an About page on this blog, which probably tells you more than you want to know. I also have a Contact page and a page where I list all the things I’ve written.
Here is a picture of me:
My activism centers in sexual and reproductive health care for marginalized groups; in particular, gender and sexual minorities and disabled people. One of my goals is to break down the image that only able-bodied, neurotypical, cisgender heterosexual women need reproductive health care. I also want to break down the image that reproductive health care is only about having children (or the prevention of having children) and that sexual health care is only about STIs. I also want to work towards a model of sexual and reproductive health care where the two are related but not inherently entwined. There are lots of people out there who may not need to access sexual health care if they are not sexually active but still need reproductive health care.
In short, I want to make sexual and reproductive health care more accessible, more open, and more welcoming to everyone. I believe one of the biggest factors in people not accessing health care (aside from cost and physical accessibility) is the stigma and judgment people face and the lack of understanding practitioners have around minority communities. I want a world where nobody suffers needlessly or lives with illness because they were unable to access health care.
(I’m one of those damned leftist pie-in-the-sky young people, too.)
So, yeah, that’s about it. I’m working on a much longer piece right now and just got some edits back on it so I should publish it … soon.