"A lot of what autism is, is trade offs between one ability and another, because of a brain flooded with information and incapable of handling all of it a once. So we handle a tiny bit and make trade offs between one skill and another. Some of us make permanent trade offs, some of us are constantly switching, and some of us go in between somewhere. Some of us also go from one set of long term tradeoffs to a different set — depending on what set is which and which skills people value, this will get seen as either progress or regression, regardless of what is actually happening. My brain once made some ultimately wonderful changes in my life, setting firm limits about what tradeoffs it was willing to accept. But because speech was one of the skills on the chopping block, other people choose to call it a regression. Because speech is that important to them, even though to me it’s a peripheral skill I barely notice in the scheme of things other than for its capacity to cause pain and wreak havoc on my other abilities."
-Mel Baggs, Don't think that we don't think
This is only a small part of what is a very excellent and nuanced post that isn't only about autism or loss of skills, and I recommend reading it as it's very important, but this particular paragraph really stood out to me. It rings very true to my own experiences, and this way of thinking of autism and skill loss/gain still feels so radical, so progressive, even today.
I’ve mentioned that I’ve had some recent apparent improvements in my speech, including what I’ve termed emergency speech. I’ve described tha
An article by Mel Baggs , about one type of unreliable speech and how dangerous it can be.
“Fluency is not the same thing as communication. You can be completely fluent, you can even sound as if what you have to say is a plausible response to a situation, and you can be saying nothing of what you intend to say.”
today, april 11th, is the anniversary of Mel Baggs' death. Mel Baggs was one of the early founders of the neurodiversity movement and believed that no one was too disabled for human rights, something that modern nd movements fail to understand to this day. sie was so instrumental to my understanding of literally everything. sie died from medical ableism and neglect during the beginning of the pandemic. we would be nowhere fucking near where we are now without hir. i've decided to make a masterlist of some of my favorite posts of hirs, organized into different categories.
(some of these are listed in more than one category because they overlap so much)
here are some of the "essentials" (what you might have already read by hir/should read first):
hir memorial site hosted by ASAN:
In My Language
the oak manifesto
There is ableism at the heart of your oppression, no matter what your oppression might be
Getting The Truth Out (many pages, parody of bad autism awareness campaign called "getting the word out")
the meaning of self-advocacy
what makes institutions bad
aspie supremacy can kill
here are some of hir beautiful writings on perceiving/communicating with hir environment as an autistic person, and on communication in general:
up in the clouds and down in the valley: my richness and yours
distance underthought
the naked mechanisms of echolalia
empty mirrors and redwoods
the fireworks are interesting
hir tumblr tag #sensing (@withasmoothroundstone)
on personhood and who has the authority to take it away:
being an unperson
what it means to be real
empty mirrors and redwoods
And understand that this is confusing. So when I write about decisions I am making, don’t take them as judgements on people who don’t or ca
on institutions and the I/DD service system:
caregiver abuse takes many forms
"i don't know that person's program"
what my home means to me
dd service system tag
god help the critic of the dawn: glamour and its fallout
what makes institutions bad
post on the JRC
outposts in our heads
on online social justice communities/their inaccessibility:
Your politics have a problem when they contradict the real-life experiences of the people they're supposed to be about.
[If this post is too long for you, try this other post, which summarizes it, but doesn't have quite as much information.]
First off, quickl
I’m autistic. Not everyone autistic sucks at pronouns, but enough autistic people suck at pronouns that it’s been remarked upon since the v
politics, ethics and mental widgets
hir tumblr tags #outside the wall and #little packages (@withasmoothroundstone)
misc:
The Bones My Family Gave Me
Please violate only one stereotype at a time
My sort of people, just as real as theirs.
Reviving the concept of cousins
gender tag
this is hir poems and creative works:
Poetry and creative writing
this is hir writing on autistics.org:
Personal non-site and FAQ by an autistic
woman who used to have a more extensive website, and where to find her
current writing on autism
I have so much shit to do and not enough bandwidth to do it.
But one of the things I really, really want to do at some point is to catalogue all of Mel's blog posts, across all of hir blogs, and other articles/publications, by date, title, first lines, and topic. Beyond, like, "autism" and "disability." Kind of like the Köchel catalogue for Mozart.
Because hir post titles and tagging system were...vague...and there is so much language of hirs buried in my brain and yet when I go to search for a specific post or specific reference, it's...hard. Especially as Google has gotten less and less useful over the years.
I'm just constantly in a battle of "Now where did Mel say this one specific thing?" when I go to try to find a link for someone else.
So there’s a saying I’ve seen go around that goes something along the lines of, “high functioning means your needs are ignored, low functioning means your assets are ignored”. It’s something Laura Tisoncik aka Muskie is credited (or usually is) credited with saying. After doing lots of digging, I couldn’t find any of her work where she says this exact quote. However…
I did find this
Autism Information Library: Conversation on Institutions
Theres one particular thing she says in this interview that is basically the same thing, though it’s much more nuanced and actually doesn’t say anything about HFAs having their needs ignored-but on a side note, people considered low functioning very much have their needs ignored too, and Muskie knows this. This is what she said:
“There is the fact that a great many of those "low-functioning" folks are being underestimated intellectually, and they're certainly not crazy (but you know even if they were...) I do suspect that a large number of folks would be saying "We're not like them." It's both, you know if you're talking about a situation where you've got your usual professional sitting there taking so-called low-functioning people, failing to offer them a reasonable assortment of possibilities for communicating, and then dismissing their ability to make decisions about themselves, I think a statement to the effect of "We're not 'r****ded'" is meaningful here. But then it's also possible to wave that around as "We're not like those people.”
So what Muskie was saying here is that the problem with functioning labels is how they harm people deemed low functioning the most. How calling certain ACs low functioning (or calling someone high functioning) is really just a way of saying that you’re “not like those people”. Is it possible that I simply haven’t found the exact quote yet but it exists somewhere I haven’t looked or can’t access? Yes. If I find it, I will amend this post. However, this particular quote makes a lot more sense given who Muskie is and her history as a survivior of institutionalization, and it also is very similar sentiment that autistic people like Mel Baggs, who is interviewing Muskie here, and Amy Sequenzia, also have about functioning labels. And they’re right.
It’s common for things people said to be distorted and shortened on the internet. Even in the modified form, I mostly agree with the quote about functioning labels-but frankly, I much prefer what Muskie really said.
[image description: a grayscale picture of Abraham Lincoln, with the quote “the problem with quoted found on the internet is thay they are often not true” -Abraham Lincoln]
Stay tuned for later this week. To commemorate what should have been Mel’s 43rd birthday, August 15th, I am publishing a blog post on how great and important of a resource Autistics.Org was. Think of this as the appetizer for that.
“Nobody is independent. Everyone is interdependent on each other. That’s important to teach your kids, too. It’s important, in general, to teach them that there are all kinds of futures, that people can live without jobs, without being able to take care of themselves, and without having to be institutionalized (including in group homes).”
Mel Baggs
“Ten Things I Wish My Parents Had Known When I Was Growing Up”
[Text of a tweet from @Cal__Montgomery, 20:18 21 Apr 21:
And in the latest round of "insurance - the gift that keeps on giving" I am now going to the emergency room due to a combination of the wounds the wheelchair that they won't replace caused getting infected and 2 lytes being critical.]
So, this is the latest round in the ongoing systemic medical fuckery Cal Montgomery has been dealing with. He's since been admitted again, and that was the last I saw.
I started following him because Mel Baggs thought so highly of him and his activism. (With lots of links and discussion of some of his older writings on hir classic WordPress blog.)
The same terrible systems are trying to kill Cal in the same basic ways that they did kill Mel. He has openly discussed this--and drawn the connections--himself.
Callousness, incompetence, and obstructions to much-needed services keep leading to totally avoidable crisis situations. Whereupon he also keeps getting his competence questioned over stubbornly and irrationally refusing to accept his "fate", and stop being the system's problem anymore.
The situation has looked critical enough for months now (at the very least 😑) that I am honestly always relieved to see his tweets.
Anyway, there is one way you can help, if you are able to. I am sure that Mel would also appreciate it, if sie were here. (And not blame you if you are struggling too hard yourself right now!)
(Cal has approved this fundraiser, but please do not contact him directly at t… Andrew Dell'Antonio needs your support for Help Cal have a
If you don't have any money to spare, sharing this fundraiser would also be a great help.
