(TL;DR summary at end.) I’ve said this before but I want to be very clear:
In My Language was a statement of solidarity with a young girl with a developmental disability. It was based on the principles of the developmental disability self-advocacy movement, and informed by both other people with developmental disabilities and people who have written about developmental disability from an outside perspective.
The girl is known only as Ashley X. She had severe cerebral palsy and no formal communication system. Her parents chose to have a series of radical surgeries and medical procedures performed on her, many of which were specifically designed to keep her child-sized for life. This included hormones to stop her growth, removal of her breast buds and uterus, and an appendectomy. They called her their ‘pillow angel’ and treated her like she was gonna be a child forever anyway. And it only got worse.
I was reading things by feminists who said that it was okay what was happening to Ashley. Some said that because she had a (presumed) severe intellectual disability, arguing for her rights would be like arguing for the rights of a fetus, and therefore could interfere with abortion rights. I wish I was exaggerating. Other feminists said that because she ‘had no language’, it was totally fine that her parents decided to do whatever they wanted with her. A girl had been sterilized against her will and feminists were saying it was okay!!!!
I remembered Dave Hingsburger describing people with profound intellectual disabilities as ‘a linguistic minority of one’ in his book First Contact: Charting Inner Space.
I remembered the fact that I have only been taken seriously as a full human being when I type or speak, and sometimes not even then. But that I have an entire language of my own, always have, that’s my first language, and when I speak that and can’t speak anything else, people treat me like there is no language, is no communication, is no personhood.
I have had a number of developmental disability labels over my lifetime – I’d say three or four depending on how you slice it up. I have spent my entire adult life in the developmental disability system. I am part of the developmental disability self-advocacy movement. One principle of that movement is our shared experience of the way DD people are treated, and our shared humanity, is more important than our specific diagnostic categories.
I drew on those values and on Dave Hingsburger’s ideas (and credited him) in making a video called In My Language. Which I explicitly dedicated to Ashley X. I showed myself going about many things that I would normally do, that unless I also use English in some form, are treated as totally meaningless when they have absolute meaning to me. It was meant to be applicable. In the Tolkien sense. Meaning – it may be about my specific life, but the experiences and principles apply widely to a variety of situations.
Also – to be clear – nothing in my video was specific to being nonspeaking. I am nonspeaking at this point in my life and that affects my life and how I am treated. But I have been speaking at other points in my life (not usually communicatively), and extremely rarely (like 5 times in 20 years and not under my control) have at least some useful speech, and at any rate nothing in the video was meant to be any different based on speech status. Like if I’d spoken the video out loud the message would’ve been identical.
Anyway, my video went viral. I didn’t know what a viral video was. I was terrified.
Media people started calling for interviews. I was even more terrified. I didn’t want to do it.
Someone explained to me that there’s two bad responses you can have to publicity. One is to love it so much it gives you a big ego and you do stuff just to get in the news. The other is to hate it so much that you run away from it even when it could be getting an important message out there. She told me I was doing the second, and that it was just as bad as the first. I agreed to an interview with CNN, among others that came later.
CNN interviewed me.
I didn’t know they were trying to do a human interest piece on autism.
At any rate, they asked me why I made the video.
I explained that Ashley X was a little girl with cerebral palsy whose parents had mutilated her and people said it was okay because she ‘had no language’ so I made the video.
They cut my entire answer. To the question about the video that was the only reason I was being interviewed in the first place.
They replaced it with a voiceover.
It was something like that I’d made it “to bring people into my world of autism”.
That is suspiciously similar to the words of Sue Rubin about why she made her movie Autism Is A World. A movie well worth seeing in its own right. Anyway, CNN had interviewed her in the past and I wondered if they got those words from her intentionally or unconsciously.
Later other places I got publicity ended up spinning the video and my self-advocacy work into the idea that “autistic people don’t really have intellectual disabilities”. That also is not and has never been a message I am interested in conveying to the world.
Unfortunately for the sacrifices I made for publicity, very little of the messages of any self-advocacy movement of any kind made it out into the media coverage of In My Language. Spreading those messages, and the message that there were entire large communities involved in self-advocacy of various kinds, was the only reason I ever agreed to a single interview with anyone.
But just to be really fucking clear:
In My Language is not and never was about autism.
In My Language is not and never was about autism.
In My Language is not and never was about autism.
In My Language is not and never was about autism.
In My Language is not and never was about autism.
Yeah, autism is one of many labels I have. It was not the focus of In My Language. And the video was explicitly dedicated to a nonautistic child with developmental disabilities. It was an act of solidarity with her. It was not about a particular diagnosis. And I have had multiple developmental disability labels when it comes to that. (Autism, childhood temporal lobe epilepsy, developmental disability NOS, and various long descriptions of a ‘severe and complex’ developmental disability.)
If you’re interested in the response of someone with a similar disability to Ashley X who actually experienced (unintentional) growth attenuation, read Anne McDonald’s excellent article in the Seattle Post-Intelligencer, The Other Story from a ‘Pillow Angel’: Been There, Done That, Preferred To Grow. She grew up in an institution presumed to have no capacity for language or communication, and had restricted growth because of the severe deprivation she experienced. She was allowed out after she won a court case proving that she was able to type (and that she was able to type messages not heard by the person helping her type). She began growing at age sixteen, after experiencing normal living conditions.
My favorite responses to In My Language when it went viral:
1. A stroke survivor with aphasia who described to me the way his rehab treated people who would not or could not communicate using words but had other means of communicating. And the effect this had on them.
2. A group of feminists of color who talked about how the things I described could be applied to growing up a Spanish-speaking child in the American school system.
Because they understood I was talking about something that could be applied broadly to a large number of people. They understood I wasn’t talking about me and my specific situation to call attention to me and one particular label I’d had. THEY GOT THE IDEA.
My other favorite responses were from musicians and artists, some with disabilities and some without, who could relate to the way I naturally interacted with the world. I loved that they got it so readily about there being other languages, other ways of communicating. When linguists would be sitting there arguing semantics over the precise definition of ‘language’ and why what I was talking about didn’t apply. (sigh) The musicians and artists were a breath of fresh air after that particular variety of bullshit. Especially since I’m also a musician and artist.
Anyway.
I don’t know how I could’ve been clearer in interviews what the video was actually about.
I don’t think the media liked my answer very much, because nobody used it.
TL;DR: In My Languagewas made for and dedicated to Ashley X, a young girl with cerebral palsy or ‘static encepalopathy’ (which just means ‘brain damage that doesn’t go away’) whose parents mutilated her without her consent and then publicized it. It was made based on the principles of the developmental disability self-advocacy movement and informed by the perspectives of Dave Hingsburger. It would have meant the same exact thing if I’d been able to speak as if I hadn’t. And it was never about one specific diagnosis. Ever. The media didn’t like it when I said this, apparently, because they never aired my answer to “Why did you make this?” and instead substituted their own answers, which were always about autism. It was never about autism.If it was, it wouldn’t have been explicitly dedicated to a young girl with completely different developmental disabilities.If you ever liked that video, learn about Ashley X and why so many disability rights activists think what happened to her was horrible and indefensible. Because that’s why I made it: People were saying she ‘had no language’ and therefore apparently should have no human rights. She was fucking sterilized, as a child, without her consent, and people thought this was okay!
I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn’t yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.
I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him?
I know everyone is different, and I’m learning to read things like his body language, but I wondered if you/any of your followers who don’t speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn’t have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.
Realsocialskills answered:
For the sake of readability, I’m going to call your cousin Anthony in this post.
The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.
Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having.
Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent.
All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.
It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest. )
Some specific things you can try:
Say explicitly that you’re trying to understand, eg:
“I don’t understand you yet, but I’m listening”.
“I’m not sure what you mean, but I do care”.
It doesn’t go without saying — and sometimes saying it makes a big difference!
Look for actions that might be intended as communication:
Does he point at things? Lead you to things? Flap differently under some circumstances?
Make a guess about what you think he might mean, and act on it.
It can be worth using words to describe what you’re doing, eg:
“I think you want the book because you’re looking at the book. I am getting the book”.
“I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!
Name feelings you think he might be having, eg:
“Susan took your truck. You are mad.”
“You like the marbles. You are happy.”
“Jumping is so fun!”
“You don’t like that texture.”
(Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)
Ask questions, and offer choices, eg:
“Do you want the red shirt or the blue shirt?”
“Should we read the princess book or the truck book?”
“Should we go to the swings or the sandbox?”
Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.
It can help to make the options more concrete, eg:
He might be more able to tell you which shirt he wants if you’re holding both of them.
Or if you’re holding one in one hand and one in the other.
Or if you put them down in front of him.
If he responds to your question in a way that you think might be communication, respond to it as communication:
Eg: “You pointed to the dragon book, so we’ll read the dragon book”.
Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words.
Eg: “Ok, we’ll go to the park”.
You can also try yes-or-no questions:
“Do you want to go to the park? Yes or no?”
“Do you want to read the dragon book? Yes or no?”
“Is the dragon scary? Yes or no?”
“Is the king silly? Yes or no?”
Again, even if he can’t respond in a way you understand, trying matters.
You also might be able to teach him to point to things:
Pointing doesn’t require motor skills on the same level that writing and drawing do.
Again, in the two book example, you can ask him to point to the one he wants.
You can also show him pointing by doing it yourself, eg:
Take two books, and say “I choose the dragon book”, point to it, then read it.
Take two books and ask him “Which book do you choose?”
(Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)
If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:
“I think you said park. Am I right?”
“Did you say park, or something else?”
“Are you trying to tell me something, or are you playing?”
The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process.
So give him time to respond — and be aware that autistic people often need longer to process and respond.
If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.
Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
(That app also builds an association between interacting with a touch screen and making meaningful sounds)
You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
Or help them out when they get stuck, without taking over.
Or say things like “which color should we pick? How about purple?” and see how they react.
Don’t expect AAC to fix everything:
Everything in this post still applies once he gets a device or a system.
An AAC device is just a tool. It’s one mode of communication, which might be useful for him under some circumstances.
Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
While some people learn to use an AAC device fluently very quickly, that is rare.
Most people who use AAC because of a childhood speech delay take a long time to learn it.
And in any case, giving someone a tool doesn’t cure their disability.
An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language.
Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
(And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication.
For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.
Remember that disability isn’t bad behavior, and don’t be mean:
Don’t ignore his communication in order to force him to talk or use a system.
The best way to encourage communication is to listen!
He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.
Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old?
Tl;dr If you’re babysitting a kid who has trouble with communication, the most important thing you can do is listen to them. Scroll up for some specific options.
As many of you may or may not know, I’ve been struggling a lot these past few months and I have been trying very desperately to sort out my Universal Credit benefit, because due to my mental illnesses and my inability to do daily tasks without support I had to attend a WCA/Health Assessment(evidence) and my benefit has been sanctioned and reassessed due to it, causing me to struggle with my bill payments and to get groceries/household supplies with absolutely no income. *my previous post*
I was due to receive government aid a few days ago on May 28th, but my WCA case has not yet been looked at by the DWP (it was meant to be reviewed in April) and now won’t be until early June and my sanction is still ongoing which means that I now won’t receive any financial aid until mid-June(roughly 25th).
I have set my goal to £300 to try and get groceries and pay my outstanding bills but I also understand that everyone is struggling, but even just £1/$1/€1 makes such a difference and sharing definitely helps just as much a donations and nobody has to donate if they can’t or don’t want to, thank you.💖
That pasta order finally showed up. Or, I’m assuming it’s the pasta since that’s the only thing I was expecting via UPS.
Definitely not the quickest shipping, and the last time I checked they still had the order marked as “processing” 🤔 But, hopefully it’s finally here.
…As soon as I probably take a cab to the UPS pickup place, that is. Because of course I missed the attempted delivery today, and they didn’t leave it with a neighbor or anything.
Frustrated again at being in such lousy health now, because the pickup place listed is close enough that a few years ago I would have just biked over there and strapped the package on the rear rack. Easy enough. Now, I can’t do that, and lugging a 20+ lb box home without a car isn’t really an option in general. But, there are cabs, and I will be glad to get that pasta 🙄
@ppl who get embarrassed bc they responded “you too” to a server who told them to enjoy their meal: if your first instinct is to be polite & friendly even when you’re not necessarily paying attention you have nothing to b embarrassed about
I love how the search function on this site is absolute garbage. I can look up a post word for word and I will NEVER find it
Pro tip:
Wanna find a post?
Write out what you remember into a Google search.
After you write that out, end with site:tumblr.com
Google will search for your text on just tumblr
In my experience, it’s way more effective than searching through Tumblr
(you can use site:SITENAME.com to search any site btws)
This usually works but for some reason a lot of posts get indexed on google from a person’s URL based on the posts that were recently reblogged on page 1, meaning that this is only a tiny bit more reliable.
I HAVE a solution to this, you have to write down site:tumblr.com/post “ “
and then write a direct quote (could be a fraction of a sentence) into the quotations, I’ve been doing this for years, and it’s so useful, it works like 99% of the time
(the more popular a post is the more likely you’ll find it)
you’re a genius holy shit
Only works if the blog settings lets it show up on google though
I promise I’m not trying to be rude with this very brisk response. I haven’t eaten yet, and I’m quite tired as a result, and then I just spent basically all my energy for the morning being delighted by the existence of flags.
For further research, the keyword you’ll want to look for is “leather culture.” Generally, research tagged with BDSM will be about the psychological impacts of BDSM, the difficulties it can present to relationship therapists, etc. Leather culture will tend to be specifically about the historic interrelation of queer and kinky identities.
* Sorry about this one, it’s a pay-to-access article that I read in college years ago, and I haven’t the slightest idea where to get it for free today. But if you have a student email, you might be able to log into your databases and find it there.
A couple of quick things to add to this, if I might?
First: transgressive. It’s something I’m finding myself coming back to more and more when I have to give talks that deal with anything historical. It often has slipped people’s minds that at one point holding the hand of your boyfriend (as a guy) in public was transgressive. It was often akin, and I mean this sincerely, and in fact I recall people treating it as if we were – having full on sex in the street. It’s often important to remind myself that there was no differentiation. We had sex with people of our own gender and thatwas kinky. So we were fair game to speculate. A looot of people did the whole thing of “but… how do you… you know.” And from that came a lot of “well, I bet they screw sheep, too!” and kids and we had whips and everyone was into watersports and…
Anything outside the missionary and we probably were all doing it, and like rabbits. And my, Betty, wasn’t that just horrid?
Part of the power move a lot of people I know used (and still do) is to use the thing people don’t dare talk about and secretly spend all their time thinking about against them. We showed up in leather. We made out in public. We were raunchy as hell at protests because it set people off.
We weren’t ashamed of liking sex. If y’all were, well then… watch this.
There were always people who have felt that who they are in bed with makes them no different than anyone else. We were not loved by our own community during the heavy protest days because we were different. And some felt, feel, that kink, leather, drag and so on was too in your face, too visible. That it did too much away from assimilation into society.
Kink is a sliding spot on a spectrum that is changed by where you stand. When I first came out kink was This Thing that was ritual and dark corners and not talked about and a club I wanted to join without knowing what it was. After some time I still thought… well, I’m not that kinky. But then I realized to some straight people screwing around with a guy was kinky. And then to some gay guys my leather made me kinky. And then to some guys my D/s relationship made me kinky. But to others it was just barely kinky.
It often seems less that there is a specific group in our community that came forward as much as the label slowly wore off the bulk of it as assimilation / acceptance (rough though it may be) progressed.
But that’s mainly personal opinion and should not be seen as “This is historical fact”.
This is what my experiences with the kink scene were like as well.
I remain troubled by the weird idea on here that transgression is bad, that shocking or startling other people sometimes is evil, etc.
I think it’s also very important to talk about the MASSIVE cultural shift that took place when kink changed from mainly a queer thing united around the word ‘leather’ to a predominantly cisgender heterosexual culture united around the term ‘BDSM’.
Because the young LGBT people that don’t feel safe around BDSM? They’re not all just conservative sex-negative people. That discomfort is there with some pretty good reasons. Young people that go to a BDSM event these days get into a completely different culture from what existed in leather culture.
The leather culture was a very broad sex-positive space that embraced things like anal sex, watersports, anonymous hookups in darkrooms, bondage, pet play, masochism, diapers, rubber, etc, etc, etc. But none of these sex acts defined leather culture. You could do none of the things that currently make up the BDSM acronym, and still be a part of leather culture.
And more importantly, leather culture was shaped by queer people, often the most marganilized queer people, and as such it was about subversive living. Redefining beauty standards, fucking over gender roles, queering everything. Leather culture was a big ‘fuck you’ to everything ‘respectable’ and as such it went hand in hand with all the movements that wanted to bring down the oppressive systems of our society. .
BDSM only became a popular term in the mid-1990s and it is defined specifically by the sex acts of the BDSM acronym. So here you have a subculture that is all about power and control and full of mostly cisgender heterosexual dominant white men forming the most important leaders and culture definers. When I look around an average BDSM space now, I see shit like:
a blatantly sexist overlap between what is considered masculine and feminine and what is considered dominant and submissive
a false ‘BDSM vs. vanilla’ binary as if all the other kinks no longer matter
a pretty strong ‘more intense BDSM is better because vanilla is boring’ culture that encourages people to ‘push their boundaries’ (jikes)
a lot of unquestioning reproductions of rape culture and an obvious assumption that everyone gets off on these same images
a complete denial that maybe some of this attracts people who really aren’t into this whole consent thing
(the old ‘no true scotsman’ thing: “Yes, Danny over there is creepy and pushy but he’s a Dom so we let him and all the subs just warn each other about him behind his back)
a tendency to hide rapists and silence victims because talking openly about rape in BDSM communities might damage the reputation of BDSM
a looooot of racism (white folks having slave auctions for fun? hello…)
a lot of commercialisation (owning all the right toys, going to all the right clubs, getting that premium membership on that dating site)
Homophobia, transphobia, classism, you name it
So, ya know, BDSM culture right now feels extremely unsafe to many andthe important part is that is not because it’s kinky, it’s because it’s a culture build by and still mostly run by cisgender heterosexual white men who get off on dominating women. Which is, ya know, not the most subversive demographic out there. Bringing down the oppressive systems of our society? Not on the agenda.
BDSM culture is either apolitical or focussed on assimilation and absolutely celebrates the dominant paradigism in society.
Leather culture
wasn’t perfect by far, but it was about breaking down
standards of what beauty and sexuality looked like,
rejecting dominant paradigism in society and that united it with all the struggles against oppression.
Which is why I’d loooooove for queer spaces to become more sex-positive and kink-positive again but I’d haaaaate for them to ‘ally with the BDSM movement’ or reproduce the shitty culture that BDSM has cooked up in the last 20+ years.
BDSM culture right now feels extremely unsafe to many andthe important part is that is not because it’s kinky, it’s because it’s a culture build by and still mostly run by cisgender heterosexual white men who get off on dominating women.
i’ve seen this post a couple of times and probably reblogged it before without this last bit of commentary but that last addition is so so fucking important so please have it again.
(also, this post is a super good articulation of why I feel deeply uncomfortable in kink spaces that are run by and/or focused on cisgender heterosexuals, especially those who fall into the dominant man/submissive woman dynamic. especially in nyc, where those are the places that get you all the attention and backpats. i can’t do it. i’ve tried and i feel sick and frightened and anxious and deeply unwelcome the whole time, and i don’t think i’ll ever again engage in a kink space that isn’t by and for LGBTQ people. in fact, the only spaces in which i personally consistently feel safe are, surprise coincidence, those which have explicitly stated that cisgender heterosexual people are not allowed.)
Urocyon's Jaunts 2.0 
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