The Problem with Inspiration

Inspiration can be a beautiful thing. It can lead to great ideas and grand works. However, there’s a downside to inspiration, especially with how it is used within the disabled community.

If you ever meet me in real life, there’s nothing particularly inspirational about me on the physical level. You wouldn’t suspect, if you haven’t read my blog or followed me on Twitter, that I might be passing for neurotypical in front of you for the sake of social niceties. If I do decide to disclose to you that I’m autistic, I’m prepared to hear that I’m an inspiration for, when you get down to it, simply existing. In that statement, I have been transformed to a person to an object that is to be looked upon with pity. Just, no.

There have been two news articles, one national and one local, that reflect that statement. Recently, there was a story that circulated about, for all intents and purposes for this post, a neurotypical who took someone who has Down syndrome to prom as part of a childhood promise. One of the problems with the article, aside from the fact that it cast the NT as someone who took it upon themselves to take a helpless disabled person to prom, was that the person with Down syndrome was never quoted. Common sense would say that it would be helpful for the article to interview all parties involved; not so in this case. Realistically, the article shouldn’t have been written because what the initial act was was called being human. I do not know the motivation behind the article, whether it be for fame or for tugging at your heart-strings, but it’s not news. I related a story of my prom experience where, if I had been more open about myself at that time, I’d bet there would be an article on it.

Locally, there was a disability expo that, for the record, I considered attending but did not. An article was printed the following day saying that a disabled horse was there that was said to inspire the people who attended, again, for the sake of existing. I brought this up on Twitter and mentioned that in one season four episode of My Little Pony: Friendship is Magic, there was a disabled pony who had the aid of wheels. Said pony had lines and was a part of the episode. Not once was his disability mentioned.* It baffles me that fictional horses did a better job of inclusion than real horses, which led to an online discussion with fellow autistic fans and followers.

What the first article is is what is called “inspiration porn” (click here for a TED talk on the subject). It’s something that I come across more often than usual, mostly from hanging out with the disabled community. I don’t wake up in the morning and tell myself that I was born to be objectified or go out in public and wish to be so. I don’t wear my disability on my sleeve in public, save for with trusted company. With said company, I’m treated just like anyone else and it’s refreshing.

As part of what I’m doing as an autistic filmmaker (no longer a film major as I have graduated) and budding advocate, I participate in dialogues about not just what we as an autistic community want and need but also with tweeting about how we wish to be treated, heard, and represented. Last night, this was a discussion as me and several others discussed the recent story about the one guy who was videotaped helping a disabled person eat and the ethics of videotaping such things (consensus states that consent from the disabled person, whose name was never given, was probably not given). It’s a work in progress, but it’s becoming part of my life goal.

I don’t have a problem if you say that I have inspired you, provided that it’s in reference to my film or writing style. However, if you pull that word out and it’s about how I simply exist, I am going to ask that you might want to reconsider. I have an article with a local art magazine, thanks to a friend. If this particular issue comes up, I’ll do my best to set the story straight. If anything, I’d prefer “influence” over “inspiration”.** In my head, “inspiration” is for objects while “influence” stems from humans and ideas. Last time I checked, I’m not an object and do not want to be treated as such.

*While I cannot say that MLP:FiM is a perfect show when it comes to this, it has done better than some long-running kid shows where the disability is given the Very Special Episode treatment. This will be covered in a future post.

**Preferred terminology stems from college art classes, especially the film classes.

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#AutismSpeaks10 Takeover

Hey there. At this time, I’d like to talk to you about something that’s been brewing over the past few days that, odds are, you haven’t heard about. It’s a social media revolution that regards A$ and those who are actually autistic.

Last week, the company announced that it would celebrate it’s tenth birthday and created the hashtag #AutismSpeaks10. The intent was for supporters and families to talk about how great the organization is. Word spread quickly through the autism community and it created a backlash. Now, I’ve talked about how the organization has affected me, so it should be no surprise how I feel about the matter.

I’ve taken to Twitter to do my part and have provided some of the tweets below. (To those who do follow me, it’s something that needs to be done.) You won’t find it in the “autism” tag on WordPress (believe me, I checked).

day 5 5

This is recent as of this morning. I’ve seen the video and it’s as one-sided as you can get.

 

day 5 2

It’s a play on words, especially within the autism community.

 

autselfadvocacy

With this tweet, I got the Autistic Self-Advocacy Network (ASAN) to favorite it. That says something.

Since I started, I’ve picked up some new followers. I’m not sure when this will end but I don’t expect it will any time soon, especially with April around the corner. The only positive news source that reported on this was BuzzFeed.

I’m still a bit new to this autism advocacy thing, but it’s something I need to do for the rest of my life. There’ll be more in April but for now, it’s a start.

Please Stop Talking

I don’t like loud noises. I’m not the first person to say this, nor will I be the last. I become mentally drained after continuous exposure to loud noises, which makes events like art openings and sporting events a problem (movies are another issue).

I’m not a loud person. I was raised in a house where silence only exists in sleep. Whatever you’re doing can be heard through the walls and floors. That said, I learned that silence can be golden. So whenever someone new shows up at our house and is louder than normal, I get agitated because it goes above the normal threshold.

This week, I have loud company staying at our place. Needless to say, I’ve been itching to seek solitude. If it was in a larger space that could accommodate the volume, like a gym or a park, then I’d be fine because it’s sometimes necessary to have a louder voice. But no, I hear each foot hit the hardwood floor like a fallen piano and screeching.

I’ve had moments where I would mutter the phrase “please stop talking” under my breath or in my head because the sound would be too much. In a futile attempt to drown out the sound, I sometimes slip on some earbuds and crank out some Pink Floyd. It’s fighting loud public sound with loud private sound; either way, both parties lose.

In large settings, like a baseball game or an art opening, I shut down entirely. I don’t become upset because I don’t want to make a scene. Instead, I retreat to my inner thoughts and plan the following week. I’ll go about and interact with people if the opportunity arises, but odds are that I’m not going to be as grounded as I’d like to be.

The obvious option would be to remove myself from the situation. That’s not always possible. I’ll step out from time to time and fiddle with some spools that a good friend of mine gave me. Other than that, I have to stay through the whole thing because I didn’t drive to the event in the first place.

I’m planning on getting some noise-canceling headphones for my birthday. At the same time, I know that I’ll need those kind of headphones for my senior project for acoustic reasons. For now, I have to grin and bear it. What doesn’t kill me will make me stronger, I guess.

Autism Is Not a Crime

Words are powerful things. Each word has a meaning that, when combined with other words, present an idea or statement that can help or hurt society. Recently, there has been another shooting and part of the speculation/fact is that the perpetrator was on the spectrum.

The problem with the speculation/fact is that it creates the idea of one equals all: because (assuming he did) he was on the spectrum, everyone else who is (like me) will behave exactly like him. This is a ridiculous and hurtful fallacy.

The saying goes that if you’ve met one person on the spectrum, you’ve met one person on the spectrum. If you met me and my brother in person (highly unlikely), you would notice that even though we were both diagnosed somewhere along the spectrum, we are two different people. We’ve had our share of successes and failures; after all, nobody’s perfect.

What I’m reading about this tragedy creates the image that ASD is cause for alarm, reaching levels of the Salem Witch Trials with equivalent “desired” punishment. NO. Like the title states, autism is not a crime. If that were the case, my brother would be serving a five-year sentence for having a meltdown in Wal-Mart because the lights drive him crazy. Screaming in church? Tack on another five. Inappropriate laughter? Ten years plus community service. Me? My sentence would be longer, probably life.

Yes, that’s an exaggeration but it’s not like living with it is easy. Each day is a challenge. I have opportunities to act on different behaviors but once I’ve made my choice, I cannot change it. There are chances to seek reconciliation and make amends if my past choices resulted in offense. They are always there; whether or not someone takes that chance is up to them.

What happened there was wrong, I won’t deny that. It’s the idea that ASD=violence that is speculated and reported as a definite fact that troubles me. Jumping to conclusions will only lead to broken feelings.

Summer Plans

Currently, it is day four of my summer vacation, very overcast with some sprinkles, and I’m spending it at school like nothing has changed. No summer classes, but more along the lines of getting a head start on my senior project. At this point, I’m drafting my proposal (due at the beginning of August) and hope to have it approved early so that I can begin shooting footage.

In short, my senior project will be a short film about how I perceive the world on the autism spectrum. I know for a fact that it will include some experimental film, one of my favorite types. At this point I’m going through all of my documents, watching experimental films as well as videos about autism, and doing some personal reflection. The cool thing is, I’ll be using some of my blog posts in conjunction with the project; by talking about how I perceive certain things and how I communicate here, I have worked on how to provide my own rationale for the proposal as well as other works. You’ll see some status updates from time to time about this project (title still pending).

I’m not seeing every single film that comes out this summer. If I’m lucky, I’ll probably see two or three. Normally, I’d go see whatever Pixar released but that’s not the case this year. I’m looking at Godzilla, Stand Clear of the Closing Doors, How to Train Your Dragon 2, and Guardians of the Galaxy. I’m working on watching all of LOTR and Harry Potter because I haven’t done that yet and I’m tired of being out of the loop.

I would also like to get back into competing at our local Putt-Putt for weekly tournaments. I started late last summer but have enjoyed it as it gave me a chance to play with non-family members. It probably won’t happen for at least another month.

Meanwhile, I’ll be up every morning before six, taking my brother to and from school. Woohoo…