Yet more counter-productive antibullying efforts.

So. Yeah. I’m sure those in the autistic community are well aware of this, but an autistic boy recently was humiliated in a very specific and degrading manner by bullies in his community. His parents then decided to compound the humiliation by going to the news and sharing the story – and the video of the incident – internationally.

Neurodivergent K already has a good take on this incident, and I direct you to her blog. The gist of her post is basically this: If you’re trying to counteract bullying, then for the love of all you hold dear in this world, don’t do what the bullies want.

In my post, I’m going to say: if you’re trying to counteract bullying, don’t amplify the bullying. By which I mean: This boy was already humiliated. He was already going to be the subject of gossip at the school for the next approximately until he graduates (judging from my experiences growing up). Then, his parents – assumably with he best intentions in the universe, wanting to raise awareness of bullying – share the video internationally.

Do you thing people in the region (they gave their region, by the way) are not going to talk? Holy flying hell in a handbasket, people. From experience in my school: I was humiliated in a very specific and very embarrassing way by some bullies as a kid. I will not detail the experience, but suffice to say it happened (in more than one way, actually – bullies are terrible people). One time, I made the mistake of telling an adult when they asked about some jokes kids were making. Then an assembly was called at school, and the principle lectured the entire school on how it’s not at all okay to do [very specific thing that happened to me] to another person.

If it was possible to melt into my seat or burst into flames on the spot, I would have. Instead, what had been an isolated incident of bullying where the bullies hadn’t told anyone because they were afraid they would get into trouble became the talk of the school. And my humiliation was compounded.

That’s what those parents did to that boy. Except, instead of it being just the school, they humiliated him in front of their entire community. People will talk. They’ll find out who and how and where and when. That’s what they do. And if his parents think he was dealing with bullying before this happened, it’s got nothing on the number of pranks that will be done to see exactly how gullible and bullyable he is in the coming months. His parents just gave the fucking green light to every single nasty prank anyone in his school thinks of, and they painted a hugeass target right on his back.

And they probably don’t realize it.

But that’s not through this being an impossible-to-anticipate consequence. Even though autistic people are supposedly the ones with empathy deficits, it’s because the parents are displaying an extraordinary lack of empathy for their son.

Parents, think of it this way: Think back to when you were a teenager. Think about something someone else did to you that you found very hurtful and humiliating. Think about that. If it’s not an incident of similar severity to what happened to this kid, amplify the humiliation accordingly. Now, ask yourself, “When I was a teenager, would I have wanted my parents to share this incident internationally?”

I am pretty much certain that the answer to that question is “No. No, no, no, no, no. Not in a million years. No.”

Parents, your kids have thoughts and emotions and feelings, and not just about what their bullies do to them. They also have thoughts and emotions and feelings about what you do to them. Think about how you would have felt as a teenager about your parents doing something to you, then decide whether you want to inflict those feelings on your kid. Think about whether or not you would’ve wanted something shared before you share it. Better yet, ask your kid’s permission before you share something concerning them. And let them have the final say. Because you’re not the one who has to live with the fallout. They are.

Why you should listen to people with disabilities over our parents

A lot of people seem to falsely equate Augmentative and Alternative Communication (ACC) with parents speaking for their kids. I’m going to discuss the difference between the two, why AAC is good, and why parents speaking for their kids is bad, followed by a bit about why “nothing about us without us” is a thing in disability rights.

AAC is an umbrella term for a variety of communication methods that exist to help people who cannot communicate well enough with speech. Stephen Hawking’s computer is a form of AAC. So is sign language. Contrary to some misconceptions, AAC does not delay speech development in kids, and actually might help speed it up.

Some who need AAC are able to independently develop a form of it – consider the various types of “home sign” that Deaf children often develop with their families when they don’t have access to schooling in a formal sign language. On a more personal note, when I was a kid, I took to carrying a notepad and pen for when my stutter became impossible to communicate through, and when I got older, I often would communicate emotional things to my parents via letter or email because I knew if I spoke to them in person, I would be unable to adequately communicate with them about it. Others who need AAC are unable to independently develop their own form of AAC, and are left without the ability to communicate complex thoughts and feelings until someone teaches them one or more formalized AAC method(s). While those learning AAC may require assistance from a parent, paraprofessional, or therapist to communicate, the eventual goal is for the person in question to be able to communicate independently. AAC, thus, exists as a tool to help those with speech and language challenges to express their own thoughts, wants, needs, and desires without interference from others. It exists to enable them to use their own voices. Furthermore, while the AAC user may need help to express their thoughts, the thoughts expressed are theirs, not what someone else thinks their thoughts might be.

By contrast, when parents speak for their kids, that is the parent using hir judgement to guess at what their kid might want. The parent might, if they are very empathic and know their kid quite well and presume competence, get very close to what their kid wants. But they might not. In many cases, even well-meaning parents who try to speak for their children with speech and language challenges presume their children to be incompetent due to ignorance. Even when the parents understand their kids’ wants, needs and thoughts adequately, bystanders, classmates and strangers are unable to attain this same level of understanding, and the disabled person is thus left in an infantilized state of forced dependence on their parents – and that is the best case scenario, when the parents genuinely understand their kid and want to help hir be understood. Worst case scenario, the parents are actually completely misunderstanding what their child is trying to communicate, and leaving their child’s needs and wants unmet. Given that people with normal communication abilities very commonly misjudge each others’ wants and needs, odds are far more likely that, when faced with a person who communicates atypically, an ordinary person will misjudge the atypical communicator’s needs and wants severely.

Furthermore, allowing parents to speak for their children is problematic as it presumes that disabled people are incompetent to do so themselves. Every NT I’ve ever spoken to can remember a time when they were a child and their parents spoke for them in something and got it wrong. They remember the frustration and the embarrassment of others talking over them and the humiliation of being chided for trying to correct someone who was speaking for your wants and getting it wrong. I ask NT people who’ve had that experience: Consider what it would feel like at 16. Or 26. Or 36. Or 76. Consider how upsetting it would be to grow up where those around you spoke for you rather than asking you what you wanted. Where they made assumptions about what you wanted rather than asking, and where your actual thoughts and feelings were doubted to even exist, when they were considered at all.

That’s how people with cognitive and developmental disabilities are treated all the time.

“Nothing about us without us” is a rallying cry of the cognitive and developmental disability communities for a reason. And that reason is this: We are excluded. When you presume to speak for us, you exclude us. We are presumed incompetent. When you assume we need you to communicate for us, you assume us incompetent. We are neglected. When you don’t bother to find out what we actually need, you neglect us.

The truth is that we are competent. Don’t ask our parents to speak for us. Ask us. Don’t push our voices aside and speak for us. We can speak for ourselves.

Person-first vs identity-first.

I haven’t put down in words my opinion on the person-first/identity-first debate, so I will.

For other people: I defer to the person speaking, if they are a person with the disorder/disability in question. I would not presume to challenge a person who prefers to call hirself a “person with visual impairment,” even if I know the broader community tends to prefer identity-first language. If the person is not currently affected by the disorder/disability in question and I happen to know the commonly-preferred option, I will correct their phrasing if the community strongly swings one way or the other – people with diabetes, for example, tend to strongly prefer person-first language, while Deaf people tend to strongly prefer identity-first.

For me: I have a simple way to decide whether to use person-first or identity first on something: Does/did the thing affect who I am as a person enough that removing it from me now or in the past would significantly change who I am? If the answer is yes, I opt for identity first – thus, I identify as asthmatic and autistic. If the answer is no, I opt for person first – thus I’m also a person with allergies, myopia, astigmatism, and a GI disorder.

Note that, for me, opting for identity first doesn’t necessarily mean I’d turn down a cure if offered: I would not turn down an asthma cure. Nor does opting for person first mean I’d take an offered cure: My parents, who are well off, have offered to pay for Lasik surgery if I want, which would cure my vision issues. I have not taken it. All it means is that I think having the disorder has affected who I am.

That’s how I think about it. I’ll respect how you want to identify – please extend me the same courtesy.

Accommodations: Not about taking care of people

There is a common and major misunderstanding among currently-able people that accommodations for mental illness, intellectual, and developmental disability are about taking care of the disabled person. This is a wrong-headed attitude to hold.

Why?

You take care of children. You take care of pets. You take care of your garden. You take care of things and people incapable of making decisions for themselves.

By contrast, you help your friend. You help your neighbour clean their driveway. You help a coworker with a project. You help people who have the agency and ability to make decisions for themselves.

Do you get the difference?

Personal living assistance, such as people to help a person with hygiene or making food or doing their taxes or what have you, isn’t about taking care of a person with a mental illness, intellectual disability or developmental disability. It’s about helping them with their living. When done properly, the PWD still have choices. They still have agency. They still have power over their own lives.

I don’t do my own taxes. I can’t. I’ve tried, and I can’t. Rather, I can but it takes a week of working on nothing else and daily meltdowns. Bureaucratic bullshitese and my brain do not get on well. In my current life, I don’t have time to take the two weeks off that getting taxes done and then recovering from taxes would entail. So I get help with it. Does that mean I’m incapable of managing my financial affairs and someone has to take care of me? No. It just means I need help with taxes. The people who help me with taxes understand that I’m a capable person who just needs accommodation in the taxes department.

And that’s the key. Living assistance isn’t having a “carer” – it’s having the necessary accommodations for your diability(ies) so that you can live your life with the greatest level of autonomy and quality possible. It’s not about having someone take care of you. It’s about enabling you to take care of your own life.

How to handle an accessibility fail.

Accessibility fails happen. A lot. Usually not out of malice, but rather out of simple ignorance and societal ableism. You might not know that your perfume makes me cough until my head and ribs ache and then cough some more. Until a few months ago, I didn’t know that certain sounds can trigger epilepsy. Most people don’t realize that a lively debate completely overwhelms my cousin (and me on a bad day) into nonverbal land. And so on, and so forth.

Access needs aren’t always pretty, or simple, or necessarily obvious. Sometimes access needs conflict (like if someone needs their cat as a service animal and I need to share the space – I need cat dander free air, but they need their service animal. How do you resolve it? I’m not really sure… I guess a compromise solution of teleconferencing to either me or the other person would work, perhaps, but I digress). Sometimes access needs are difficult to anticipate (like, for example, if someone is on an extremely rare medical diet). For whatever reason, sometimes access is messy. I get that. I get that, because access is messy sometimes, accessibility fails are pretty much inevitable, even if people have the best of intentions. Which, when I’m not immediately upset about a situation, I do recognize is often (though not always) the case.

So, because accessibility fails happen, it’s a good idea to have a rule of thumb for how to sort them out. Expecting people to be perfect is unreasonable. But I can – and do – expect a good-faith effort to avoid the common accessibility pitfalls and to rectify any accessibility fail brought to an organization’s attention.

I’ve talked about a shitstorm involving an accessibility fail before, I’ve talked about the importance of self-accommodation before, and I’ve talked about how financial barriers to diagnosis can result in being unable to access accommodations to ensure full accessibility. This current post is actually inspired by two situations going on: One is the treatment Neurodivergent K received at Autreat when they had an epilepsy accessibility fail, and the other is the treatment commenter Stella received on Chris Rodda’s blog (original content no longer available, but caches of all comments may be found here. Tl;dr version: blogger posts ableist comic to blog at the expense of Blind people, gets taken to task, shitstorm ensues, during shitstorm, commenter notes that the comic was itself inaccessible to the visually impaired as there was no alt-text, and blogger literally tells her, “screw you!” in so many words).

I might post on how to anticipate accessibility needs later (currently, it’s not what I’m in the mood to write about, so if/when I am in the mood to write about it, I’ll pingback/link appropriately). But right now, I want to talk about what to do, and what not to do, when an accessibility fail arises.

Ideally, you should avoid an accessibility fail before it happens, but if you don’t, the exchange between you and the person bringing it to your attention (who will probably be a person with a disability, considering that most people who know how to spot accessibility fails are the people affected by them), should go something like this:

Person: [content] isn’t accessible to (me / people with [disability]) because [reason]. Can you [provide accommodation]?
You: [apology]. I’ll (do that/ask someone with the know-how to teach me how and provide it) ASAP. I’ll let you know as soon as I have it. *goes and does so*
You: It’s fixed now. Is that better?
Person: (Yes, thanks/No, it needs [modification].)
You: (You’re welcome. / *does modification, repeat lines 3-end until Person says it’s accessible*)

So, that’s what to do. Fairly simple in principle, more difficult in practice because egos and learning curves. In addition, you should keep in mind the following:

  1. The person whose accessibility needs were unsatisfied is justified in being upset over an accessibility fail.
  2. If the person is curt or angry with you, you should still do your best to meet their needs.
  3. This may require you to swallow your pride if an accessibility fail happens on your watch.
  4. Remember that, however frustrated or hurt you are by the person’s anger, they’re dealing with this very often. Some deal with fails of this sort on an every-day, several times a day basis. Imagine if your basic needs weren’t met and were in fact ignored that regularly. Imagine your frustration with that situation. That’s what the person with a disability is currently going through. If their upset seems like an over-reaction to you, that’s only because you’re seeing this fail as an isolated incident, and not as an ongoing and chronic pattern of people ignoring their needs.
  5. A little apology goes a long way. If you make an accessibility fail, the second-best way to make sure the other person knows that you actually do give a darn about their access needs, is to give a sincere and real apology for your failure.
  6. The best way to make sure the person knows that you give a damn about their access needs is to set up a plan so it doesn’t happen again under your watch. If you make policy, structural, or rules changes to your event or organization for a person’s access needs, that shows you actually do give a damn about this accessibility stuff, far far better than any defensive posturing (see #2 on the What Not To Do list below for more on that).

And here is what you should not do, under any circumstances:

  1. Hold accessibility hostage to the person being nice/humble/apologetic enough for you. That’s all kinds of screwed up. You’re allowed to feel hurt if someone get’s angry with you for something you perceive as not your fault. It’s not okay to use that hurt as an excuse to compound your wrong by refusing to right it.
  2. Get defensive. “But I take care of accessibility in situations X, Y and Z!” means nothing to the fact that in this situation, you failed.
  3. Complain about people expecting “special treatment.” Equal access isn’t special treatment, it’s a human right.
  4. Guilt the person over their access needs. That a gluten-free meal might be more expensive doesn’t mean that a person with celiac can magically not get sick if they eat a sandwich on wheat bread. Someone should not be shamed, humiliated, or guilted for having needs.
  5. Take the person’s anger with the situation personally. As stated in #4 of the previous list, they’re not just angry at you, in particular. They’re angry at the fact that society as a whole routinely ignores their needs, and you are just the latest manifestation of the overall pattern.
  6. This one should go without saying, but it’s happened to me a significant number of times so apparently it doesn’t: Don’t curse at, berate, threaten violence or engage in violence against the person whose access needs were violated. The sole exception to this is if they become violent towards you. Self-defense is okay. Physical or emotional abuse intended to put that damn [ableist slur] back in their place is not under any circumstances.

When dealing with accessibility fails for my access needs, I find that the rule is: I complain, person gets defensive, I point out my need, person gets angry and refuses to accommodate, I still can’t access the thing / or if I can, I have to put up with significant and serious negative consequences (shutdown, meltdown, asthma attack, etc) later. In other words, that I can access it doesn’t mean I should or that I’m not putting myself in danger by doing so. Given the many and sundry accounts of similar access fails with similar responses available online through a bit of Googling, and given that the #EverydayAbleism hashtag and account on Twitter are things that exist, I know I’m not the only person this is the rule rather than the exception for.

If you give a shit about accessibility, and if you really believe that stuff about people with disabilities actually being people, you want to strive to be the exception to the rule. You want to strive to be the person who turns a shitty situation into a good experience for the person whose access needs were violated. You want to be head and shoulders above everyone else, not sometimes, not when it’s convenient, but every time. Not because you get cookies or praise or gratitude for it (though you may, they aren’t and shouldn’t be guarantees – see #1 of my what not to do list) but because it’s the right thing to do.

Figuring out my difference

TW: some discussion of self-injury

I remember the day I figured out I was different.

Up until that day, I’d known things happened to me that didn’t seem to happen to other kids. I knew, for example, that the teachers were harder on me than on other kids. I knew that no other kid in my class still had “temper tantrums” at ten. I knew that other kids didn’t get called “retarded” unless they had an aide or had to skip class for extra help. I knew that other kids didn’t have the kind of dangerous rages I did. I knew that other kids didn’t trip over their own feet in gym class, that they didn’t get beaten up or teased as much as me, and I knew that other kids didn’t like me much.

I knew other kids didn’t bite their cheeks bloody to keep from screaming when the room was too loud (I knew that because of the look of mingled alarm and disgust my sister gave me when I mentioned that class was too loud so I bit my cheek and would probably get a canker sore – that look, like the look of mingled mockery and disgust, is one that a bullied kid learns to recognize quickly. That’s a look that tells you to shut up because while that person won’t turn it into ammo, if it gets out, someone else will). I knew other kids didn’t have to clasp their hands so hard their bones creaked to keep from smashing their fists into their head when the sun was too bright. I knew other kids didn’t gnaw on their hands when they were trying to concentrate in a noisy room. I knew other kids didn’t beat themselves bruised in an effort to avoid beating someone else bloody. I knew other kids didn’t burst into tears for things universally derided as “little things” by the adults around them. I knew other kids weren’t “over-sensitive.” I knew that, when trying to resist the tears, other kids didn’t pinch themselves hard enough to break skin or pick their skin bloody or pull their hair out, and by then I knew enough to make sure to ask to go to the bathroom before I did it, lest I end up having other kids make fun of me for it or, worse, have an adult see me and start screaming.

I knew other kids seemed to actually enjoy each others’ company. And that they seemed to make sense to each other. I knew that they didn’t make sense to me. I knew that my parents would call me a liar if I said noise was making my ears hurt or light hurt my eyes or my tags itched. I knew to stitch the hem of shirts I’d pulled the tag out of shut enough that my parents wouldn’t notice that I’d destroyed it – because if they knew I destroyed the hem (with my teeth, since they wouldn’t let me have a seam ripper because I’d wreck my clothes with it…), they’d call me stuff like disgusting and weird and stupid in their frustration. I knew that my sister didn’t mind tags like I did.

I knew that I had to be careful where and when I started to read, because adults wouldn’t believe me when I said that I didn’t hear them. I knew that I was far more picky than my peers about how things must be done (… they must be done right because if they’re not done right, it’s worse than not doing it at all). I knew that adults got annoyed with me and how I could pull an all-nighter without intending to.

But I didn’t add it all together, until one day at recess.

I was hiding in a little hidey-hole under the porch of the school (crouching, to avoid getting mud on my pants, with a book, of course), and something caught my attention as I was about to start reading. At that point, I realized I was the only kid on the playground who was alone. For some reason, that realization was catalyst to a thought process, where I added everything I’d noticed over a decade of life and how I was always called weird and so on… and realized I was different.

I’m not like them. I’m different. They’re right. I’m weird.

It would be two years before I came across the word for that feeling, alienation. Four years before I realized that alienation was actually what I was feeling. Five years before I first came across the word autism, and first considered I was autistic. It would be fifteen years before I claimed the term for myself.

But that day was when I realized what I’d spend the next fifteen years trying to find a name for.

Revisiting labels: Why “labels are harmful” is bullshit

So, I’ve posted before on why “labels are harmful” is harmful. Now I’m going to talk about why it’s bullshit. This is a re-write of a forum post I made once, edited for typos and clarity.

One of my biggest irritations is people who tell me I shouldn’t label myself. “You trap yourself in a sick narrative,” they tell me. “It changes how you think of yourself – you’re not you, you’re a sick person once you label yourself. It’s not helpful.”

To which I say, in a very heartfelt manner: That is fucking ridiculous.

Allow me to explain: People who have problems with labelling seem to have a magical thought process that if the label isn’t there, the illness, disability, or what have you it exists to name will disappear. Don’t label yourself as sick and you won’t be!

This, quite frankly, is bullshit.

When my lung function was pooped out at 40% of my normal at max and I was having >30% peak flow variability in a day, I was really sick. Realizing that it was a relapse of my childhood asthma and applying a label to my illness didn’t make me sick. I was already sick. And not having a label for my sickness didn’t make me magically well. I was, as I said before, really sick. What applying the label did is give myself and medical professionals I was working with a handle on what was wrong. I could (and did) search journals for info about asthma and for info about comorbidities to worry about and possible conflating illnesses to rule out. It also gave us an idea of where to start with medication, and where to go for our plans B, C, D, E, F, etc. It wasn’t all sunshine and daisies after we got the right label applied to my illness (I had trouble with a doctor who didn’t believe that the first-line treatment wasn’t helping, and eventually I had to switch doctors because of it), but it gave us a place to start from.

Likewise, not having a label for my attention issues when I was a kid didn’t mean I didn’t have those problems. It didn’t mean that I magically was a well-behaved student in elementary school, that I wasn’t up till three or four in the morning every night in high school with insomnia, that I could get out the door without forgetting at least one important thing, that I could remember to eat if I was absorbed in something. It didn’t make my handwriting neat enough for me to read it (I still have a hard time reading my own writing unless I make an effort to be neat – and don’t even try my cursive), it didn’t make me coordinated enough to not trip over my own two feet in gym class, it didn’t mean that I didn’t have meltdowns where I’d hit people and break things and not know why, it didn’t mean that I could handle the school cafeteria (I often ate in the bathroom in the winter, or outside in the summer because the cafeteria just was so loud and chaotic and overwhelming even when the bullies who would ruin my lunch for shits and giggles weren’t there that I wouldn’t be able to eat), and so on.

It did mean that I knew I was different from the other kids but didn’t know why because my child psych didn’t feel that labels were helpful.

So instead of knowing I’m different because (reason), I was left with knowing I’m different but having all the adults in my life lie to me and tell me that I’m normal and that there’s no reason why this should be harder for me than it is for most kids so if I found it harder it was because I was lazy, stupid, irresponsible, and just plain unlikeable. Sometimes they said it explicitly, sometimes they just heavily implied it.

Labels do not make people sick. They do not cause people’s problems. They exist to put a name to something that the person likely already knows they have. In that way, they’re helpful, because once you have a name for something, you can unlock all of the knowledge in the world about that thing. But first you need a term for it.

Labels do not change peoples’ identities. A person forms hir identity through hir experiences. I identify as an asthmatic not because I’m labelled like one, but because I fucking well have asthma. And thus I’ve been through the hoops of poorly controlled asthma. I’ve been up at three AM unable to breathe. I’ve been blue in the ER. I’ve dealt with obtuse medical staff who are unable to recognize that cyanosis in asthmatic = breathing troubles even if there’s no wheeze. And so on. I call myself asthmatic because I am asthmatic, not because I’ve been ‘labeled’ asthmatic. Likewise with my attention problems.

By contrast, not labeling causes harm. Let’s conduct a thought exercise:

Imagine that you have a weird glitch that makes an important program for your work non-functional. And there’s no workaround. And everyone around denies that this problem exists. Your computer works fine, what are you talking about? See, this completely different program isn’t glitching at all! If you don’t know how to use that other program, you should just ask and we’ll teach you.

So you ask for training, even though you’re pretty sure you’re doing the same thing as everyone else. The training confirms your suspicions. They give you step by step instructions, except on step 3, your program shuts itself off. On the training computer, it works fine, but when you return to your computer, it shuts off again.

People at work are getting angry with you. Why isn’t your work done? What are you doing with your day? Why can’t you work like Morgan One Desk Over? Hir work is always done on time. Etc.

And you try to explain that your program isn’t working. And they don’t believe you, because when you load the program, it looks just fine. It looks normal.

After a while, you’ll collect disciplinary action. And get a reputation for laziness and being a complainer since you’re always whining about that program that works just fine for everyone else. You just use it as an excuse not to work, others will say disdainfully. You’re too dumb to figure out a simple GUI, others will sneer. There’s nothing wrong with your program, so it must be some problem with you why you’re not getting work done. You have a problem with the boss because you’re too negative and don’t get your work done. There’s nothing wrong with your program. There’s nothing wrong with your program. It looks fine. Nobody else has this problem, so what are you talking about? There’s nothing wrong with your program. You’re being lazy. Just work harder.

That’s what it’s like to have a problem others don’t recognize and not know what it is. Only it’s worse, because it’s not a computer program, it’s your mind or your body that’s got something different.

Then imagine your giddy relief when an IT person is called in to help with the printer and you ask hir to take a peek at your program. The IT person realizes that it was corrupted by a power outage a while back and reinstalls it for you. Xie teaches you how to recognize when the program is corrupted, what to do when it’s corrupted, and how to prevent it from becoming corrupted in the future.

That’s what it’s like to get a diagnosis (label) and a strategy to address your issues.