Sunday, May 25, 2014

Graphic: What "spectrum" really means

The term "autism spectrum" was specifically invented to help people understand what autism is. When it comes to assumptions and willful ignorance, neurotypicals never fail to disappoint. Most read "spectrum" and think of it as a:


When what it really it means is:


With this understanding, we are not talking about a spectrum in the sense that the visible light spectrum is a spectrum. We should really be calling it the autism continuum.

Sunday, May 11, 2014

Coffee With a Shot of Entitlement

The other day I went to Starbucks for lunch. I ordered a pastry and, as always, a decaf iced coffee. The decaf part is very important, and not necessarily for the taste. As far as I know I'm not allergic to anything, but caffeine does give me a weird combination of constipation and diarrhea. (Perhaps that is an allergic reaction, but I digress.) We tend to think of anything to do with butts as inherently humorous, but constipation and diarrhea are both medical conditions; if you have them, you are considered sick. People even die from them, a whole lot more than shark attacks. People also die from allergies. For example, if a person who is allergic to caffeine ingests caffeine, that person will likely have medical issues possibly requiring hospitalization or even causing death.

The barista apparently didn't think it was that important, because he didn't write anything and didn't give me decaf. Bear in mind my order was not that complex: Just the type of drink, flavor, size, and decaf. What possible excuse did he have for getting my order wrong? I didn't come at a busy time, so it's not like the server was hurried. In fact, I was the only person ordering at the time. I've heard of "decaffing" people as a bizarre and ineffective form of spite, but this is even more fucked up. Caffeine is a drug. Would you sneak vodka into someone's drink when they specifically asked for root beer?

You just want a jelly sandwich? But you can hardly taste the peanut butter.

The typical excuse in this situation is "you can't taste the difference." First of all, fuck that. Total bullshit. I can easily taste the difference and I wasn't looking for it. If people only order decaf for the taste, that premise already proves you wrong. Second, how does that make it okay? You can't taste a rufie in your drink either. That doesn't mean it has no effect.

The reasoning for intentionally ruining someone's drink seems to be that the customer is not always right, and is just being pedantic (for the sake of pedantry) if ordering anything but a standard generic drink with no qualifiers. It's only natural to think that; after all, humans are all born with identical sensory experiences and have no preferences, which is why no two people have ever argued about where they should go for food.

If you couldn't tell, that was sarcasm. No mr. barista, YOU are the one being an asshole by not giving me EXACTLY what I want. There should be no variation, because it's your fucking job to match orders exactly. This is where apathy meets ableism, because if there is a slight variation, I probably cannot consume the product.

"HELP ME MY MOUTH IS BEING CONSUMED IN RAGING FIRE BY THE DARK LORD SATAN HIMSELF" is my reaction in both cases, so yeah, I guess I can't taste the difference.
What should I have done in this situation? A blog post certainly isn't going to find its way back to its human subject. Should I have dumped the drink on the floor to give the guy a big mess to clean up? Thrown it in his face? I would probably get kicked out, but there are plenty of other Starbuckses to choose from. Or should I have respectfully asked for a replacement? Still an unnecessary inconvenience to both of us, but it would have been more "socially acceptable" than something more dramatic. I could file a complaint to the manager and hope that 1) the message reaches its destination, 2) the guy serving me isn't the manager, and 3) the manager actually gives a shit.

Unfortunately, I'm not and can't possibly be prepared for every situation that calls for confrontation. So what I really did was quietly leave and then throw the drink into the nearest trash can; $4.08 down the drain. The lesson I take away is that I need to stop being afraid of making a scene. I'm naturally conflict-averse, but I do not want to be. We do not need to tolerate intolerance, or be nice to assholes. If you're afraid of being an asshole, you're probably not the one doing it.

Saturday, May 3, 2014

Methinks I Do Protest, Part 1

One of the reasons I've chosen to start this blog on this particular week is because I have something to write about that's somewhat time-sensitive. Last weekend I went to the Autism Speaks fundraiser in Pasadena to protest against the organization. It was my first time protesting anything, and I feel I learned a lot, mostly positive things.

My story starts two weeks before the event, when I visited Pasadena city hall. I came for information on how to do things legally, and wound up armed with information on the normalcy of legal protests, how many people (10) qualify as a large group, and the private/public nature of rented space. Not every city can say this, but Pasadena was very reasonable. I also notified the police commissioner by voicemail, and it turned out that none of these people needed to be contacted on the day of the event, but it showed credibility and confidence that I was able to say I had done that, especially to this asshole. I do recommend that other protesters contact their own city hall because every event and location is different. However, the information I got may apply generally or at least give you a clue to when someone is bullshitting you.

If you're in public space, you have the right to be there as long as you are not disrupting in a way that would always be considered a disruption, such as egging people. However, if the space is being rented specifically for the event, then merely having a large group is considered a disruption. However, any group smaller than 10 people is NOT considered a large group and you have the right to be there.

3. Someone who rips up a protester's flyer without even reading it first.
I tried to organize people on social media, but only one person, whom I already knew, agreed to join me. He will hereafter be referred to as The Writer. I would have still gone alone, but it was extremely useful having two people. Unfortunately, if you're alone, people assume you're just 'that one crazy person' and dismiss you. For this reason a larger group is generally better. Even just adding a second person lends credibility because those two people had to agree with each other. I know none of this is true on principle, but it's how most people really think. Having four hands is also useful for holding signs, distributing flyers, and taking pictures. Two heads let you talk to two people at once, and take turns relaxing when it's one at a time. The Writer is not autistic, but he is an awesome ally, and did just as good a job at arguing as I did.
Mere minutes into the event, we met this asshole, executive director of the Autism Speaks LA division. Unsurprisingly, he was the biggest bullshitter of the whole event. He referred to the Pasadena Rose Bowl as private property in order to say that we had no right to be there, a tactic he quickly abandoned when I made it clear that we knew that was bullshit. He pulled numbers out of his ass and even made up blatant lies. For example, I cited the "I Am Autism" video as an example of hate speech, to which he asked "that was 7 years ago and we apologized for it, so why are you so hung up on it?" It was only 5 years ago and no you didn't. He also said "we only do this once a year", or maybe a hundred times.

What was surprising was that most of the people attending the event were pretty nice. We only met a few assholes the entire time. Some people even approached us aggressively and eased up as we explained ourselves. The first person we spoke with caught us walking in and asked "what's with the sign? Not trying to stop you, just curious." The sign said "Autism Speaks doesn't speak for me" on one side and "Autism Speaks is a hate group, not a charity" on the other.

I didn't take many pictures, but did manage to get a selfie in before meeting this asshole.
Probably the best thing we did was distribute this flyer from the ASAN which is very detailed despite being only one page, especially in breaking down Autism Speaks' budget. It also answers the question "why are you so negative?" and the rationalization "at least I'm doing something" by listing three organizations to support instead. I also made a slight alteration to the flyer because I felt that the Autism Women's Network and Ollibean deserved a mention. I printed a little over a hundred of them (at Staples, not FedEx, don't panic) and we ran out after 3 hours. Lesson learned: Print TWO hundred next time.
What makes flyers useful is that it gives people the chance to get the information in a pressure-free setting and with the ability to retread anything they missed. Also because the way I present information verbally isn't always optimal, whereas the flyer is really well written. Seriously, kudos to whoever wrote that one. The only change I would make is to update the financial part to use the 2013 numbers instead of 2010.

We asked if we could take a picture as The Writer handed out the last flyer.
The highlight of the event was meeting some of the people in charge of the Autism Society of Los Angeles, including the executive director, Caroline Wilson. They said that they had a booth not to support Autism Speaks but simply because of the volume of people at the event, and later greeted us as "our wonderful self-advocates". Autism Society is unfortunately run by parent allies, and they make a lot of mistakes because of that, but at least they're trying to do good. If they're one of the organizations on ASAN's original flyer, they must be doing something right.

As my first time protesting, there were a lot of mistakes to learn from, but I think the most important lesson is that I (we) did it, and I can do it again. I will do it again, because no matter how hard the battle, ignorance eventually loses to knowledge.

None of these people are assholes.
EDIT 05/16/2014: I mixed up some names. Caroline Wilson took the above picture. The person IN the picture is Judy Mark, ASLA's Chair of Government Relations.