Wednesday, February 27, 2013

A thank you to my basketball coach. Or, sports inclusion for realsies.

So I am writing this in reaction to this godsawful inspiration porny video that's going around. I'm not linking to it because I will not have that filth on my blog. Basically, a high school basketball coach put in the team manager, who has an intellectual disability, and every damn person on the court-his team and not his team-passed him the ball until he made a basket.

This is not inspiring. This is not inclusion. This is patronizing and yuck.

So, I feel compelled to write about middle school basketball. Yep, I played team sports in 6th-8th grade: basketball, volleyball, and soccer. But I am going to focus on basketball because that is the sport of the day, and because that is the sport where I think the school's coach did it best.

My mom really wanted me to be good at standard sports, so in 6th grade-middle school sports were no cut-she signed me up for basketball. And. I was shit awful. I wasn't exactly afraid of the ball; it's big and orange so I can get out of the way. I couldn't really catch yet, the ball didn't always go exactly where I threw it, I had that kind of autistic quality to my movement in that I'd get where I was going but look funny doing it. I could in theory make a basket. Sometimes. Ish.

Really? The beginning of my first season? The only things I had going for me as a player were that I could get from one end of the court to the other faster than average and I had no fear of being run over by larger players.

And Coach C could have decided to not play me, or to give me some patronizing role, but he didn't. I ran all the drills. I ran suicides. I ran three person weave (a passing drill). I learned all the fancy ways to dribble. I played more games of Horse and Knockout than I can imagine. We shot freethrows. We scrimmaged.

And you know what? In 6th grade? I kind of totally sucked. I made a few baskets, but my primary role was getting rebounds and being another warm body on the court between the opponent and the basket. 

But I worked hard in practice. I was part of the team. I was weird. I needed different directions sometimes. There are things I couldn't do, and we were all aware of that; I'm really short to have been a forward and a center rather than a guard. I just don't have that particular skillset. But Coach C worked within my skillset. I was considered competent. I learned the skills. We had a really tall point guard who didn't have the plant-yourself-in-the-paint ability I did. She is able. That's what you do as a coach-you work with your athlete's abilities.

And then a funny thing happened. In 7th grade? I was a starter. Yeah, that's right, the kid who couldn't dribble a year ago was starting. Because I was competent. Because I was part of the team. The buzzer went off & my hands were over my ears, but I was part of the team. Halfway through the season I sometimes stayed to play in the 8th grade games as well-small school meant small teams & that was allowed. I scored every seventh grade game I played in, as I recall, and in one 8th grade game. I even scored a basket when half our team fouled out & we only had 3 left on the court.

Eighth grade? I started. Usually I jumped, even. As a team we sucked, honestly, what with being a combined 7th-8th team of I think 8 players. But I had improved as an individual. By the end of my basketball career, I legitimately had basketball skills. I can dribble between my legs, shot 85% on freethrows, all that jazz. No one who saw me on the court would question that I was an athlete.

And if Coach C had taken the attitude towards players with disabilities that so many people take, I wouldn't have learned any of those skills. Yes, Coach C took a chance playing me in the game. He may have "wasted" coaching resources on me-but he didn't seem to think he did. He treated me like a real person, like a real athlete. He took my differences into account, but ultimately he had the same high expectations for me as for every other athlete on that team.

And that is where my problem lies with these "heartwarming" videos. There's no dignity in them. None. I may have sucked my first year of basketball, but I knew damn well that when I scored, I scored. People played defense-they saw me as enough a person to be a legitimate contender. And that's way better than being the charity case of the night. Any day.

This leaves a bad taste in my mouth because everyone conspired to be all heartwarming and charitable and shit. It's just so dehumanizing. If his team had gotten him the ball and set the mother of all picks? That would have been kinda rad. I could have lived with that. But when the other team is passing you the ball that is an insult.

In 7th grade there was a girl who knocked me down repeatedly at one game. It's just how the sport goes, you know? And she kept helping me up. And I was angry. "She doesn't even think I can get up by myself".

If she had been handing me the ball? Oh god! That would have been the one time Coach C had to treat me differently, because I would have gone absolutely ballistic. I was not 'disabled' on the court. I was another player, and wanted to be treated as such.

I am so, so glad that I did sports in a tiny little league that had no choice but to actually play me, with a coach who had the philosophy that hard work is more important than natural ability. I don't want to be anyone's feel good story for a moment. I learned real skills, I was part of a team, and that felt way better for way longer. I won't ever look back and wonder about them passing me the ball-I know it wasn't motivated by pity or some feel good thing. It was because I was their teammate, I was open, and I had developed skills with them.

So, thanks, Coach C. I'm no one night wonder inspiration superstar. And I thank you for it. Thank you for letting me be just another player instead of a vehicle for some feel good garbage.

Saturday, February 23, 2013

Autistic people should flashblog

This post is part of today’s “Autistic People Should” flash blog where Autistic bloggers are writing about positive things that Autistic people should do. Why? Because if you type “Autistic people should” into either Google or Bing’s search engine query box, the autocomplete results–the most popular searches starting with those words–are disturbing and upsetting, especially if you’re Autistic or love someone who is. 

Autistic people should...

be heard.

We say things. Those things? They should have a platform. That platform should get equal time to the things people say about us, if not greater time.

be listened to.

Not only should the words we say be given air time, but people should give them consideration. People should take them onboard instead of dismissing them out of hand. Our communication, whatever form it takes, should be taken as valid.

be understood.

Take the time to figure out what we mean. Understand meaning, not style. You don't have to grok every facet to understand what we mean. I don't have to understand deep in my soul what it is to be a musician to understand that not all of the "same instrument" are the same. Just so, you don't need to know with every fiber of your being how I feel when I spin to accept that it does great things for me. You don't need to 100% grok to understand, I promise.

be embraced.

We are valuable members of our families and our communities. Treat us as such.

be welcomed.

When you see us in your community, be a source of welcome. Be that source of light, be that safe space. Be that warmth in the scary, cold world. Show us that the world isn't always horrible. We have a lot to offer. So do you. Bring us into communities like you know we're real people.

be able to live a life without fear. 

I have written about fear, recently. The fear we all live in. It shouldn't be that way. This flashblog is a response to yet another thing that proves we have a lot to fear. It should not be that way. Not at all. But you, and I, and everyone, we can make it better. You, yes you, can help reshape this world to how it should be.

Autistic people should live life fully, fearlessly, and wonderfully. Make it so.

Monday, February 11, 2013

Who's afraid of whom, now?

So apparently people are "afraid of me".

I might tell them uncomfortable truths, and that terrifies them to their very bones.

Never mind that people like them regularly kill people like me (and get away with it) (and write themselves as the victims of their own crimes). Never mind that people like them abuse people like me (and get away with it). Never mind that a person like them knifed me int he arm when I was 19 (and got away with it). Never mind that people like me are viewed as burdens and tragedies that happen to our families. Never mind that people like me are at astonishingly high risk of poverty, homelessness, and violence, and that the prejudice of people like them keeps it that way.

Never mind that my life literally is at risk every time I speak out, and frequently when I don't, because people like them allow being like me to be a capital crime. They don't care to see that this will hurt their children, so long as they get the martyr points now.

They're afraid I might not be nice to them.

I cannot even imagine living a life where getting snarked at by a teensy disabled blogger even pings my fear-dar. Cannot. Imagine. I am too busy dealing with the death threats (from people like them) and attending vigils for people like me (who were killed by people like them) to even wrap my head around it.

They're afraid I'll be sarcastic at them. I'm afraid they'll kill me. So why is only their fear seen as valid?

Saturday, February 2, 2013

How To Social Media Crisis: A Sort of Guide

First, what is a social media crisis? It's really just when someone or some organization's bad behavior goes viral and they have to do damage control to save face and reputation and such.

The term "going viral" is fine, or "throwing a shitfit on the internet". So why "social media crisis"? Because when I called out Autism Speaks for plagiarizing me, they sent a guy to my blog to try to do damage control, on Twitter, all of that. His real name was there, & like a good little net native I looked him up. The job title his google+ said he had? Social Media Crisis Manager. This is the height of hilarity to me. So. Social media crises, we all are.

So. Someone did something shitty, and you want to make sure the world knows it? How do you do this?

0. Build networks. You need to do this before shit goes down. Networking, autistic, not exactly synonyms. But the key here is not just that you have a decent sized network (quality counts here, folks): it's that the people in your net have different circles from you.

Having multiple friends or contacts from multiple kinds of interests? That works to your advantage here. My atheism friends and my autism friends and my dance friends do not all know the same people, who in turn do not all know the same people. So anything that I say that they care about enough to pass on? It's going to be passed to people who didn't already see it from me.

A note on this, though: If I expect people to care about my shit, I have to care about their shit too. So don't just randomly add people just to have people. A degree of mutual interaction makes it way easier to spread the signal once things go down. Someone doesn't have to understand why I am annoyed and finding something exclusionary to pass it on anyway if we've interacted enough that they care without a doctoral level understanding of all the issues at play.

Good places to build the sort of network needed for good shit stirring are internet forums, social media like facebook and twitter and tumblr (omg tumblr), listservs, and real life contacts are useful too. But we're talking internet shitstorms here. Places you can connect with people.

1. Write up what happened, what makes it wrong, anything not wrong about it (if applicable), and post that shit somewhere public, like a blog. Somewhere with a permalink and not password protected. You want people to see it.

2. Post it to social media: tumblr, facebook, twitter, google plus. If you're posting about a company, hashtag (#tag) it on tumblr and twitter. You can hashtag the name of events and individuals too.

2b. Advanced users: On twitter especially, you can get the attention of people with way bigger following than you have by sending it to them: @username will plop that where Username will see it. Not all celebrities or semicelebrities are all that discerning about what they retweet, and plenty who are will get behind good shit.

2c. You might end up with people defending their shit to you on tumblr or twitter. Be ready for this.

3. Get your friends to pass things on as well. Usually friends share things, but I cannot emphasize enough that a social media crisis is a collaborative effort. I cannot throw a big enough shitfit all on my own to make change happen, and neither can any of you. Encourage your friends to post, tweet, share, reblog, et cetera. most of these things are super easy in terms of spoons-click a button and it's done.

4. Be relentless. This is the hard part. I get annoyed with myself asking the same "soooo you find any of the at least 100 adult autistics I personally know who are interested in your subject area? You look yet?" questions of people like Orycon day after day after day. But if you shut up they think they won. Fuck that. If you annoy them enough they have to respond, and if you annoy other people following them enough, they will respond. Being annoying is my superpower and I have learned to embrace it for this.

5. Be merciless. Know what you want. Refuse to back down. Make every communication public. Every last one. Remember this Orycon post? ALL the correspondence. And without it, they would have just been "oh whatever, an annoyed little bratchild", I am pretty sure. There's much less "xe said, ze said" when it's all posted publicly on the damn internet. They can say you're as unreasonable & hostile as they want, but when you already posted exactly how unreasonable and hostile you are? The bite kinda goes out of that one.

6. Do not go quietly into that dark night. Repeat, repeat, repeat. It's exhausting.

6b. Your friends & allies should be helping you with the rinse lather repeat. If you have a strong network you can bucket brigade it, pass it on around. No one should be trying to do this shit alone.

7. If you are really loud and persistent, they will want to talk to you. Do it in a way that is accessible to you. If they want to Skype and you don't talk on phones, tough shit for them. If you need a support person, take a support person. You are doing them a favor by trying to resolve things.

8. Know what would resolve things. And go get it.

9. Enjoy your "Social Media Crisis" merit badge. And a good long nap.

Friday, February 1, 2013

Hackathon "for Autism" with no Autistics? Guest post.

This is a guest post from T in regards to the
Bing Fund autism hackathon in Seattle this March. Note that I, K, am not opposed to the apps, or the hackathon, but am greivously concerned about the attitudes expressed implicitly and explicitly in the advertising.

But T alerted me to this. And T wrote about it, so I will shush and let T speak. 

I'm an autistic adult. I'm also hearing impaired. I wear two behind-the-ear hearing aids and have rudimentary signing abilities because I chose to try to "pass" rather than go to school with other kids that were Deaf or Hard of Hearing.
No one ever calls hearing impairment a disease. No one uses the word "affliction" or "devastation" with it. The early years with a hearing impaired child can be difficult because of communication issues. It turns out that a lot of the early speech and behavior therapy I received from my mother(also hearing impaired) and professionals is nearly identical to early speech and behavior therapy for autistic children, because the two syndromes are often confused with each other. Autistic kids get diagnosed as hard of hearing, while hard of hearing kids get diagnosed as autistic.
I was never diagnosed as autistic. but I am both. I have personal experience with assistive living devices and services for my hearing impairment, that run the gamut from FM systems to hear the teacher over a noisy classroom, programmable hearing aids, TTY services, special education services, and so on. I was offered someone to take notes for me in my big classes in University, and extra accommodations for a quieter exam room if I needed it.
These things don't really exist for the autism spectrum. Instead, we have millions spent researching the causes, rather than developing similar devices and services for autistic people. If they did that with hearing impairment, I would not have hearing aids, or all the innumerable programs I benefited from. I'd be erased and forgotten. They do have special education programs for autistic people, but its all about teaching autistic kids how to pass for "normal", rather than helping them coexist.
That is the experience of autistic people today. I can't imagine an event for developing stuff for hearing impairment that wouldn't have people with hearing impairment there to speak and judge. It just isn't done.
But it is done for autistic people, because we can't be trusted to represent ourselves, or our needs. Autistic adults don't need services or assistive living devices, or any of that apparently. And an event on helping autistic kids? Definitely don't need autistic speakers!
That's what the Bing Fund has done recently. They announced the "Hack Autism" event, where programmers, designers, engineers, and so on, all come, learn about autism, and try to create new devices to help autistic people cope and adjust to society at large. However, they talk about autism as a disease, saying it "afflicts" people. It isn't communicable(except via genetics). Imagine if people talked about hearing impairment that way. "Oh, I'm so sorry your family was afflicted with Deafness." Jesus fucking christ, that's about the most dehumanizing thing they could say about autism!
And then, they have the nerve to only have neurotypical people as speakers. And not just that, parents of autistic people, rather than autistic people themselves. My mom can speak about hearing impairment, because she is hearing impaired. But she can't speak about my autism. I can. Not her. She doesn't know my experience.
The other speakers are researchers into the causes of autism. Some of them do treat and counsel autistic people, like Dr. Gary Stobbe. But he isn't autistic himself.
This would be like having only white people talking about what black people need to fight racism.
And to top it all off with a steaming shitty ableist cherry: "These prototypes will be judged by a panel of subject-matter-experts and parents." Devices made for people like me, aren't even being evaluated by people like me. Not by people who have worse issues with sensory environments than I do. Not by people who have harder issues navigating or remembering tasks than I do. Not by the actual target fucking market. We aren't being treated with any dignity or respect here, because we can't even be trusted to evaluate these devices for ourselves. No, it has to be neurotypical people, talking on our behalf, doing things for "our own good". This is so unbelievably paternalistic, that it can only happen with autism. This would almost never happen with other disabilities like hearing impairment.
Oh, and let's not even mention how autistic adults over 20 apparently don't exist or don't need devices and services. Dr. Gary Stobbe, one of the speakers, runs an adult autism clinic. He should know exactly what kind of services there are to help autistic adults transition: there aren't any.
And then, there's a distinct eau de classism here as well, with the mention of mobile/tablet. 85% of autistic adults are unemployed. So how exactly is an app on an iPad going to help them? You're damn right it doesn't.
So fuck you, Bing Fund and the Hack Autism organizers. Get some autistic activists to speak to you. Get some autistic people to judge the results. Get some autistic people involved. If you keep treating it like a disease, keep treating us like we can't represent ourselves or judge these devices ourselves, then we'll continue to have problems in society. Because its not us that are messed up; its a society that doesn't fit our needs and doesn't fit how we interact with the world. Few people would tell me I'm a burden on my family for being hard of hearing, but you're telling me I'm an affliction for being autistic. Look up the social model of disability, and oh yeah: Fuck You.

About T: I'm a Canadian software developer at a major multinational company, and I am both hard of hearing and mildly autistic. I love to DM D&D(all versions and settings), watch Star Trek, and design video games.