Tuesday, November 24, 2015

Reality is more extreme than Fiction

I played a game where curing autism was a major plot point. I won't describe all the details, because spoilers, but it is pretty obvious that anything that includes this would include some pretty horrible people.

I kept getting "I hope you're okay with this game"

And I kept thinking "I'm wondering what the problem is. I can't figure it out"

Because the truth is, whenever I've seen people try to emulate horrible people around autism, around cure, around how inaccurately autism is viewed. They don't make it, it's always understated compared to the truth of the reality we live in.

I've never seen something as ridiculous as "dolphin-people" in any parody when discussing a cause of autism. And none of the emulations include a treatment as on-the-surface horrific and yet still being used as forcing children to drink bleach. The reality of normalizing behaviors through forced eye contact, stim suppression, and other methods, are removed, or hidden - speaking about how much people care about the children even in the situations where such methods would be used.

Even when the focus is cure, obsessions with cure are played down! It is played as if "we want to find one that works", rather than "we'll do anything at all, no cost is too high, in order to get a cure". Children aren't traumatized from the search, attempt after attempt, forcing "treatment" after "treatment" on them, not letting them be kids; trauma beyond the trauma of knowing they're wrong in their parents eyes.

People are seen as disposable, and that's supposed to prove a point, making it more extreme than reality. But, how is it, when it murders are played off as mercy killings; when accommodations are seen as too much work; when the ability to be autistic and accepted is based on how easily you can be seen as neurotypical.

No matter how extreme people have tried to make these, the furthest they've gotten, is displaying how reality is. They've not gone into the land of satire. Reality is too extreme for that. People are really, just that ableist in real life.

Monday, November 16, 2015

Dear Hubway

Dear Hubway,

I know that there are reasons to have rentable bicycles around Boston. It's a great concept! People should be encouraged to bike around the city instead of use cars. I also know that you talk about the importance of safety while bicycling, including providing more affordable helmets. Safety is important, and certainly overlooked by too many.

However, the bikes you provide are absolutely in no way safe.

It is not safe to cause people seizures for doing something as simple as walking down a street where someone has chosen a to ride. Your bicycles do such things. Flashing lights, your flickering lights, cause risk of death for many with photosensitive epilepsy.

It is not safe for people like me who don't have epilepsy, but have other photosensitive disabilities. If my brain stops being able to process things properly because of the flashing lights of people riding your bikes by me, I might not know where I am, what I'm doing, how to walk. It is not safe to be trapped, because you have decided that flashing lights are what to provide.

It is not safe for those riding these bikes either, as studies have shown that drivers struggle with identifying distances when the lights are flashing. Solid lights are much less disorienting even for those without disabilities. Solid lights people are capable of recognizing what they're seeing.

But even if it were fine for the riders, even if it were safer for them, it is necessary that people with disorders such as epilepsy be capable of doing things like grocery shopping. It is necessary that you take them into account for your business model, instead of doing things which are easily fixed, and known to be problems for the most famous trigger for a well known disability.

It's not reasonable to ask someone with epilepsy to not leave their house, because they might meet a flashing light if they exit. The fact that this is the approach many people take does not make it acceptable.

It'd be a lot safer, more straightforward, and more reasonable to simply have you make a small alteration. Swapping your bicycles to use safer lights, non-flashing ones, would make things safer for everyone.

Lights which let people see, know where each other are, and those of us who are walking, be capable of having our brains not backfire into whatever our disability has been triggered into today. Lights which let us be members of the community, rather than prevent us from taking part. Lights which don't cause people to know, that leaving their home is a roll of the die of what they're risking today.

Please, make the changes to make your bicycles safer. What you have isn't safe. A small change can make a big difference.

Sunday, November 1, 2015

Acknowledging Me

How my body moves determines how much I know.

I mean, I know this to be the case, because of how I interact with you. The same person, the same people, but completely different interactions. How my body moves determines if my words are worth hearing, or if they're only to be discarded, into the abyss of "we're trying to fix the autism".

If I rock, or sway, or so much as tap my fingers, then how can I make decisions? I don't know that much. How could I? You decide so. You know this about me. You know that people who move like me do not know how to do such difficult tasks.

Yet if I'm still, I can lead. I can provide new information that none of you have seen before. I can teach, and share, and you listen to me!

You. The same people. Depending on my movement that day.

Because how my body moves must determine how much I know. Not the words I speak, not the thoughts I think.

It must be how autistic I look.

Ironic, it is, that these movements regulate me. These movements organize me. These movements help my thoughts fit their pieces together into these words that you hear.

Ironic, that while they don't determine how much I know, they determine how well I can use what I know. And yet, if I am in a state where I am using this self-regulation, then I am deemed not capable of knowing this information. Not capable of knowing about autism.

Ironic, that making it easier to think, easier to share, easier to know what I'm saying, what I'm doing, how to exist in a world not meant for people like me, makes me know so much less in your eyes, that I should not be listened to, even about people such as myself.

But, how my body moves, doesn't actually determine how much I know, and you can't see that. You only see the stigma of a diagnosis, not the person in front of you. You don't see the same me every day, only that who you want to see.

I'm autistic every one of these days, moving or not moving. I'm the same person, with the same strengths and same impairments; same job and same college community; same interests and same need to teach and share and improve myself and what is around me.

I'm always Tuttle.
The same Tuttle.

I'm just actually autistic, and it's sometimes harder for you to pretend that I'm not.