I won't #LightItUpBlue, I will #WalkInRed for Autism Acceptance

Tomorrow, April 2nd, Autism Speaks has declared to be "Autism Awareness Day", and that we should #LightItUpBlue.

Please allow me to explain why this is very problematic. And because my momma taught me good, I will present a solution with each problem.

ONE:

INSTEAD:

Awareness is not needed anymore. We all know autism exists. Sadly, the organization big business (Autism Speaks) which made the world more aware of autism did it in a mean, hateful way. Case in point, THIS video they put out in the late 2000s. (copyright says 2008, content says 1300) The past couple years AS has become more subtle and two-faced about this. Some of the things they actually say and post online seem to be loving, but actions speak louder than words. See below.

TWO:

INSTEAD:

Take a look at Autism Speaks' budget. It's a mess. Did you know they spend more annually on catering than they do on services for autistic people/their families? Yuck. But hey! 38% towards research! Except the research they do is things like prenatal testing (similar to Downs syndrome) so you can abort your autistic child before they are born. Yay eugenics! Oh wait... That also means they think an autistic life is a life not worth living.

The most infamous research AS does is to "find a cure". But that's a load of heart-warming pseudoscience. Autism itself is not a thing. Autism is a collection of things. Look at the DSM 5 if you don't believe me (though the diagnostic criteria therein is also problematic...based exclusively on young white males). Anyways, autism is a collection of things. Think of it like a froyo bar. There are dozens of toppings available, you need at least five to qualify. Sensory processing issues, executive functioning disorder, face blindness, social phobia....lots of things. Collect enough of these, THEN that is autism. "Curing" autism is a really fluffy, vague idea. In order to do so you would have to resolve a large number of other smaller things. Saying you want to cure autism is like saying you want to cure "sicknesses". Okay...which one? There are a lot and you have to treat each one differently. As advanced as science is now, it's still not up to the task of "curing autism".

ALSO...many/most adult autistic self-advocates don't want a cure. Autistic adults want to be accepted and loved, not tolerated and cured or "normalized". Enter neurodiversity movement. Citizen Autistic is a great documentary on neurodiversity. (I think you can find the full thing on Hulu?)

Across the US, Autism Speaks has huge fundraising walks. They raise enormous amounts of money with each walk. And yet, it takes several of those walks just to fund the salaries of several of their top-most leaders. In 2012, the president of Autism Speaks made $436,314.00. (For comparison, ASAN President made $65,000 that same year.)

THREE:

INSTEAD: Well, the answers are in the same graphic up there...

Once upon a time, Autism Speaks did have ONE autistic member of their science advisory committee . John Elder Robison joined the committee hoping to steer them in a more positive direction. After several years of trying, he finally had to cut his losses, so he quit. Here is the blog post he wrote about leaving AS.

Autism Self Advocacy Network was founded by and is totally run by autistic adults. Even by some people who are nonverbal (commonly called "low functioning". More here on why functioning labels aren't helpful: article by wonderful (nonverbal) autistic self advocate, Amy Sequenzia).

See this Logo to the left? It's ironic. Autism Speaks, it's time to listen! But they don't. AS flatly refuses to listen to autistic people. Example: for AS tenth anniversary several weeks ago, they started a new hashtag #AutismSpeaks10. They asked people to fill this hashtag with examples of how AS had touched them. Autistic self advocates saw an opportunity and ran with it. 

After a couple days of this hashtag being hijacked, AS quietly switched to #AutismChampions. They did not respond to or acknowledge the thousands of tweets from upset #ActuallyAutistic people. Within hours this hashtag was also hijacked. (Note: AS has since scrubbed their website of it, but for years they supported research linking vaccines to autism.)

So I could go on and on, but I won't. I guess what I am trying to say is, be careful when you donate money to charities! They are NOT all created equal. 4 cents of every dollar going to help autistic people and their families is not a responsible use of donations.

Also, do a little research when you see things like" #LightItUpBlue for autism awareness!" Or the Ice Bucket Challenge last summer...I recall their being some doubt about that organizations spending habits too...

As for me, I will #WalkInRed2015 tomorrow and donate to Autism Self Advocacy Network, because I can trust them to be financially responsible and actually work on making this world a better place.

Synesthesia

I have synesthesia. Don't worry, it's not harmful (and sadly) not contagious. Synesthesia has been defined and explained over and over again, so I will not (also not the point of this post so). Here is the wiki about synesthesia. Also, if you suspect you may be a fellow synnie, go here for a nifty test!

I will give you a few minutes to go read those, mmkay?

SO. I have grapheme synesthesia. This means letters and numbers each have a unique and SPECIFIC color for me. I am not a projecting synnie, but rather a "mind's eye" synnie. I don't literally see text in rainbow colors, but when I look at words/numbers/etc my brain attaches that extra color information to the characters I see. (Note: some mind's-eye synnies, when inebriated become projecting, so they actually see printed text in color! I wouldn't know though.)

This chart will give a a rough idea of my colors. The colors are not even close to the exact shades I want them to be, but hey, technology...amiright? I did not randomly make up these color associations, and I cannot change them. I don't even like some of these colors, but again, I have no control over them.

It cracks me up in TV shows when a character has synesthesia (Heroes) because their colors are always beautiful and coordinate nicely. Reality is not so kind. Pull out your crayons/colored pencils/markers and write your name in my colors. Probably not very pretty. I get excited when I meet someone who has a name where all the letters look good together. Spelling is also critical to me. Kathryn=/=Catherine=/=Katherin. I always want to know how someone spells their name so I can see the colors in my mind properly. I feel let down when I get to know someone named Sean, and then find out weeks later he spells it Shawn or Shaun. Gak! It's like I don't even know them.

These color/character associations are incredibly strong. Trying to tell me the number 4 is green is like trying to convince any non-colorblind person that the sky is yellow with neon pink polka dots. Not going to happen anytime soon...

Synesthesia can be both helpful and annoying. In an 8am college math course, it was a nuisance. I would wake up as late as possible and slide into my seat just as class started. Having only been out of my bed maybe twenty minutes, I was still rather sleepy. Tiredness has a similar effect on synesthesia as alcohol. Before I totally woke up my colors would project and I wouldn't be thinking straight, so my class warm ups looked something like this:

Which totally doesn't make sense because magenta plus medium purple equals sort of a light maroon, definitely NOT bright green. Ten minutes into class or so I would be more awake and my colors would be less pronounced.

One summer I worked as a painter. Oddly enough, one of my coworkers was also a music education major with grapheme synesthesia. We had interesting arguments.

Musical notation also has colors for me. The note colors correspond to the letter name colors. (G, any octave or clef is pumpkin orange. Accidentals do not change the color. Enharmonics are a NIGHTMARE.)

While fabric and scrapbook paper that look like this is cute, the colors are ALWAYS WRONG!!!1!

Synesthesia is vastly more common in children, but adults tend to ignore preschoolers who say things like, "Look daddy! The purple crayon is the mommy and the gold and blue ones are her twin babies!" This demonstrates yet another variety of synesthesia (there are anywhere from dozens to hundreds of types, depending on where you get your info.) I have experienced a few other types. (I'll save it for another post.) As a child I experienced a type where colors/letters/numbers/something has fixed and diverse personality/sex/gender/physical attributes. Mine was color --> personality/sex. My strongest memory of this flavor of synesthesia is from the four crayons and coloring page from restaurants.

In my next post about synesthesia I will try to illustrate the one time I experienced pain-->color. I will also try to draw some of the cooler/possibly more useful types (ticker tape, spatial calendar).

Reasons Why I am Like a Cat, Part 1

Wobbly Boundary Lines in the Performing Arts

Performing artists (more specifically addressed in this post, instrumentalists) have, um, "different" boundaries than other (normal?) people. The following are three such instances from my time in college.

#1. The Showers of Wiebking Hall

          My freshman year of college I lived in Wiebking Hall, on the second floor. This floor is reserved for performing arts majors.

*Actual scene from finals week. Each day during finals week we got one hour to make noise in the dorms. The rest of the time we had to be silent so people could study. Cue jam session in the hallway.

My first days living here were during marching band camp. Each day it was between 95* and 105* with a decent amount of humidity. Ew.

As soon as we finished practice each day, it was off to the showers!

I found out that dorm showers are a lot like campground showers.

-Glorified bathroom stall

-One hook for your towel/clothes/etc

-In need of bleach and a good scrubbing

-Low water pressure

A few weeks into the semester someone told me the water pressure was better up on the third floor. Lucky for me I'm female, because the third floor had been dubbed, "The Nunnery". It was an all-girls floor.

Soon the guys found out about the awesome water pressure upstairs, too.

       Looking back, I think the ladies of Wiebking should have been more concerned about this, but we just...weren't.

#2. PotR Goes to Utah

        In 2006, Pride of the Rockies marching band became friends with the marching band from Weber State University. They invited us to come out to Utah and perform with them during a football game where our two teams duked it out. (We lost, as usual.)

Right before the game, the director of the Weber band told us they had separate changing rooms for us to get into our uniforms. We assumed Weber got one room, and PotR got another.

When we got to the changing rooms, this is what we found instead.

        For home games, everyone got changed in a big gym filled with instruments and uniform racks. The racks were organized by instrument, so it was normal for us to help each other zip up our jackets and such.

BESIDES, who the heck wears a band uniform without at least a t-shirt and shorts underneath? (Seriously *twitch* yuck.) Not like we were getting nekkid or anything...geez.

#3. Reed Sharing

Double reeds...my fellow bassoonists and oboists...I'm calling us out. We share reeds. It's nasty, but most of us do it. Some people sanitize the reed with mouthwash first, but I dare say that is the exception, not the rule.

(Clarinets and saxophones...you too, or no?)

        In the case of this illustration, contrabassoon reeds are very expensive and must be ordered weeks in advance. For the part-time contrabassoonist, it is common to only have one or two reeds at a time.

Double reedists are always in search of better reed making techniques. It is difficult to tell if you will like a new technique unless you try a reed that has been made that way for yourself. As such, it is in our best interest to *share, share, share. 

*Except during cold season.

        Soooo....our boundaries can be a little wobbly...

        Whatever.

       You're welcome for all the music!

Shopping: Scary salt+pepper shakers

Tony and I went into town to do some shopping today. The first two pictures are from Wal Mart....of course, hence, 'Murica! The last picture is from one of our favorite antique stores. Yeaaaaahhhhhhhhh.......he has some weird stuff in his shop.

Running, So Far

About a month ago I decided to start running.

Actually it's more like jogging...

...with lots of walking.

I currently do not have any goals for distance, speed, or weight loss.

I do though! Consistency. I am good at obsessing over something for a while, then totally dropping it. I don't want to do that with running. I want this to be a steady habit for the rest of my life. SO, my first goal is just to do the thing consistently. Once it becomes a strong habit, then I will make new goals.

Here are some benefits I have seen from my running so far:

My Best Fitting Gender Pronoun: Human

*The following post is MY opinion for myself. I'm not saying it has to apply to you if you don't like it. Aka, no flame throwers.