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.

Again and again and again.

TW: murder, suicide, murder-suicide, ableism, and victim-blaming

It’s happened again.

Another parent has decided to murder their autistic kid.

RIP Robbie. You did not deserve what your mother did to you.

The article is fucking disgusting, too. All of the “distraught mother” tropes and all the painting the victim as the villain and his murderer as the victim.

And I’m so damn tired that every single time some parent decides that disabled kids aren’t worthy of life, we have to have a huge fucking fight over whether or not we’re people and deserve to have our murders treated as such.

I just wish that just once allistic people would STFU and let autistic people grieve for a murdered one of our own in peace without having to fight over whether or not we’re people and whether or not our murders actually count as murder-murder.

See also: Cue allistic parents whining, “But services!” as if that excuses anything in 3… 2… 1…

How disingenuous can you get?

So, not only did Autism Speaks quote Kassiane Sibley without her permission, portraying a well-known and vehemently anti-Autism Speaks autistic advocate as if she was a supporter of theirs.

They then claimed to have permission on her blog.

They then claimed they would take it down.

They instead white-texted it.

They finally took it down after being called on it…

… then they changed the URL and quietly put the white-texted version back up sometime last year.

Alyssa of Yes, That Too has a much better run-down of the whole thing here.

Their white texting makes their toolkit – in which they’re still using her words without her permission – come up on the first page of Google when you search her name. For some permutations, it comes up even before Kassiane’s own sites.

I won’t say this is a new low, because that would minimize all of the other vile shit they’ve done in the past few years (like partnering with an organization denounced at the UN for its torture of disabled people, driving their autistic members to resign in protest of their demonization of autism, and using racist dogwhistles to dismiss their critics, among many many many many others). It is, unfortunately, par for the course.

And, believe me, the irony of an organization that paints people like me and Alyssa and Kassiane as “not living” and possessed by demons finding it necessary to steal an autistic person’s work and go to such lengths to keep stealing it is not lost on me.

But this standard-operating-low hurts a friend of mine, and so it makes me angry. Tell Autism Speaks that they need to stop being disingenuous assholes and take that shit down.

Autism, Asthma, and Autism Speaks.

This is going to seem like an odd analogy, but bear with me for a bit and you’ll see what I’m getting at.

Like autism, asthma comes in a spectrum, ranging from people who cough a bit longer than usual when they get a cold and aren’t bothered otherwise to people undergoing transplant evaluation because of the severity of their asthma and everything in between. As a kid, I was on the severe end of the asthma spectrum. As an adult, I’m pretty much dead in the centre of it. Like autism, asthma often becomes evident in childhood, and like autism, asthma can cause parents trouble, heartache, and suffering on behalf of their kids. I have lost track of the number of times my parents found themselves in the ER at 3AM because I couldn’t breathe. It sucked for me, yes. But I’d by lying if I said I didn’t think it sucked for them, too.

Like autism, asthma has some stigma and prejudice to it. Not as much, to be sure (I’m unlikely, for example, to get arrested for public intoxication if I’m jittery from Ventolin, but that’s happened to autistic people for being autistic in public), but try to argue with me that there’s no stigma to asthma when I’m having a flareup at the gym and four different well-meaning condescending jerks tell me that I shouldn’t “let” myself have an asthma attack or that I need more willpower or what have you. Tell me that when someone tells me I’m using my asthma as an excuse the third time I have to go for inhalers the day after I get over a cold. Try to argue there’s no stigma when I have four chairs worth of elbow-room on all sides in a packed cafeteria because I’m daring to take my inhalers in public. Try to tell that to undergrad me when I got ejected from class because I was having a flareup and was coughing a lot (the prof refused to believe I wasn’t contagious and told me I should be home in bed. Now, I’d know to go to the accessibility centre to protest that, but I was ignorant of my rights at the time). Or try to tell that to kid-me when the teacher made her wait through an asthma attack till passing out because “If I let you go get your inhaler, everyone else will want to go, too.” There’s stigma and prejudice. That teacher nearly killed me because of it. Other kids have died from it.

But unlike autism, asthma awareness campaigns do not focus on the parents of kids with asthma to the exclusion of the kids themselves. They don’t focus on kids to the exclusion of adults (though, I admit, they do seem to forget that young adult asthmatics like me exist – it’s all children, teens and seniors in the majority of the ads). They don’t pretend that those with mild asthma aren’t asthmatic enough to need help or education, and they don’t paint asthmatic kids as a burden or a drain on society. Asthma awareness campaigns focus on lessening the stigma and removing the sense of people with asthma being somehow other or less, whilst also educating on the correct way to respond to attacks in hopes of preventing another Sam Linton. Autism Speaks, on the other hand, focuses on increasing the stigma and scaremongering for more funds.That’s not okay. ASAN and AAC have issued a joint statement, and the Autism Women’s Network has issued their own on the issue that inspired this post (short version: surprise surprise, once again Autism Speaks decided they have the authority to speak for people like me without our permission).

Leaving out my many and sundry other issues with Autism Speaks (and they are legion, including but not limited to: their support of child killers and attempted child killers, their erasure of autistic advocates, their support of abusive and harmful actions in the guise of “therapy”, their historical association with pseudoscientific movements like antivaxers and DAN, their current association and partnership with the torture-as-therapy-advocating JRC, and on and on and on it goes…), I have a Big Fucking Problem with how they collect their money. There are ways of raising awareness and funds without stigmatizing and dehumanizing those with a condition. They do it for asthma, for cerebral palsy, for Down syndrome, for cystic fibrosis, for MLD, and for dozens of other conditions, some of which, unlike autism, are progressive and terminal. Why isn’t Autism Speaks doing that for autism?

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.