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.

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.

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.

I type to communicate

I type to communicate.

Look!
Here is communication.

Or when I type directly to people on the other side of the world, that's still communication.

What's different when we're next to each other? What's different if we're in the same room, and typing - computer to computer - rather than dealing with the challenges of spoken language? What's different if some are speaking and others are typing?

I type to communicate. Sometimes, it is the only way to get ideas across.

My tongue ties, and I try to speak. Words come out, but they're not what I mean. Confusion. Maybe it's good enough? But I want to do better, and I can when I type.

My brain revolts, and I try to speak. Nothing, I do not understand how the words go to speech. The migraine has stolen the key to that part of my brain. But I type, and can get what I need.

My body overloads, and I try to speak. Words come out, but it's hard. It steals capability. I cannot see. I cannot understand. I forget what I'm doing in the middle of my sentence. I type, and it's easy, it's understandable. My fingers understand what my vocal cords do not.

I type to communicate because it makes sense. Because it gives me more power to share with the world, thoughts I want to share, ideas I think others need to know.

I type to communicate because I can get more thoughts to more people. More ideas out of my mind. More stories where they need to be.

I type to communicate because communication isn't the same as speech and speech isn't the same as communication.

When it makes sense for me to speak, I speak.
And when it makes sense for me to type, I type.
And I can be someone who does both.

I can be someone who is verbal and someone who types to communicate.

I can be someone who is verbal and keep multiple AAC apps on my phone, turning to them at appropriate times.

I can be someone who is verbal and still think better in text. Just because I am verbal doesn't mean that my speaking voice is all of my communication.
Just because I am verbal doesn't mean I need to speak at all times.

I type to communicate. My words. My methods. My way of being.

Getting used to it

"They have to get used to it"

Whether it is the touch, or being "okay" with someone doing something they don't want sometimes is hard to tell. These words are repeated; it doesn't matter how many times, or ways, a child says no, you still should put your hands on them.

"It doesn't really hurt anyone"

It doesn't matter as you grow older, you are still told, "you can't really say no", and even "your experiences are wrong. You are wrong. You don't really have a reason for thinking that, for saying that."

Both of these things are things I've been told recently. I've been told touch doesn't hurt. I've been told that people just need to get used to touch. I've been told that it doesn't matter if people say no, you should still put a hand on their arm. I've been told it doesn't matter if I say no, stop touching me.

I wonder if people are even thinking about what they're saying; if they're even aware of the implications of their words and actions, or if they are just blissfully ignorant. They must be ignorant it seems, people wouldn't take away that much autonomy, would they? Would people knowingly say "you aren't allowed to say no" or "someone touching you in case you are touched later is more important than your ability to choose what is done to your own body"?

How do people have these thoughts- where the ability to say no, the ability to choose what is happening to yourself, the ability to decide whether or not someone else is in your body's space - is less important than something someone else chooses - someone who's body it is not.

How are these things justified? "They have to get used to it"? As if someone is not capable of saying to keep hands away from their body as they get older. "It doesn't really hurt"? As if someone who is disabled is incapable of identifying their body's own sensations.

Getting used to it.

Getting used to doing what others tell us to do. Getting used to hearing "no, your experiences are a lie". Getting used to being told what to do by others, because they have power over us. Getting used to our senses not being paid attention to, even when it involves getting physically into our space, touching us, pushing us around.

Getting used to it.

Being afraid to speak up. Being afraid to say when there's a problem, because you've always been told that you're wrong, that your feelings are wrong, that your body is wrong. Getting used to it. Not knowing how to say something, or when to say something. It's always wrong you know. You're always wrong.

Getting used to it. Because it's never your choice. It's only the choice of the others.

Everyone is capable of learning

Everyone is capable of learning.

This doesn't feel like a radical statement. It doesn't feel like one that needs to be made, or one that should need to be made. It also feels like one that needs to be repeated over and over again.

Everyone is capable of learning.

This means that people need to be given that chance. They need to be given the chance to challenge themselves. They need to be given the chance to make mistakes, and the chance to recognize that the mistakes were mistakes. They need to be given new information and the chance to get an education.

If we don't give people these, we are saying is that they cannot learn. We are saying that they are not capable of doing something as basic as increase what they know and improve. We are saying, not only that they do not know something now - which is okay, nobody knows everything - but that they cannot gain knowledge and skills; cannot find ways to adapt, cannot do things different than they do things now.

People change. People grow. If we do not give people the ability to grow, if we take that away, then what are we saying about them? How many ways are we saying they are wrong, lesser, incapable?

If someone is nonspeaking, they can still learn. If someone needs a 24 hour support staff, they do still learn. If someone looks different, it doesn't take away this capability.

What takes it away, isn't themselves, it is others. It is others saying "you are not capable". It is others not teaching. It is others preventing people from ever making a mistake. It is others preventing people from recognizing when a mistake is made, not allowing them to recognize, learn, and grow.

We need to presume competence, and this isn't only when it is convenient. It isn't only when it is presuming that people can communicate. It isn't only presuming things that are easy for us. We also need to presume that people can make choices, that people can make mistakes, that people can learn from these mistakes, and people can learn in general. If we take that away, we take away far, far too much.

Everyone is capable of learning. Do not take that away.

Accessible doesn't include me

I don't have a choice of always watching, always being on alert. I don't have the choice of always making myself aware of everything going on around me, no matter how many spoons it is costing.

I don't have a choice, except to be on high alert, or to find one of few close people who will watch out for me, warn me, and take on the burden, exhausting themselves in order to make an experience easier for me. Only in those situations, can I let my guard down, letting myself down to low alert, and even then, I must pay attention always.

I don't have a choice, for things happen fast, and I need to react. If I don't, I am the one paying for what others are doing. I am the one spending days in pain, losing the ability to do things as simple as eat or sleep, see or balance enough to take a step forward. I am the one thrown into pain as my brain breaks into migraine day after day, because of what happens around me. I am the one who has to try to keep myself safe, because I cannot trust that I will be safe in the migraine, cannot trust others will help, and cannot trust that others will do a thing to prevent the migraine from setting in.

It doesn't matter how accessible a place is. Accessibility doesn't mean me. It doesn't mean someone for whom the smell of perfume will near instantly change whether or not they can be in a space. It doesn't mean someone for whom someone sitting next to them after smoking, is a way to question chance only about how bad the migraine gets based on how fast they escape, not even a question of whether it occurs.

It doesn't mean someone for whom the lighting, the sounds, every one of those things, are more ways to chance what is going to happen. More ways that already affect what is going on, how well they can speak, or recognize faces, or navigate space.

Accessibility doesn't mean including someone for whom you need to control the environment. We have to take care of ourselves. We have to watch out and protect ourselves.

I'm lucky this isn't life or death for me. Other people are not, and can literally die because of the accessibility challenges that I see every time I go anywhere. (I'm so glad I don't have seizures.) In either case, accessibility should not be limited to ramps and CART. Accessibility should include me even though it isn't life or death. It should include people for whom it IS life or death for. But in both cases, if the environment matters, it doesn't.

I wish you'd hear me

If I say these words, will you listen.
Or will you hear what you expect.
Will my words get lost in a sea of sound?

Does your selective hearing work among ideas too?
As it does the sounds in the world around us?
Do you get to hear what you choose, blocking the rest out?

I wish I could show you. Maybe then you'd understand
The ticking of the clock
The humming of the fan
They jam me up, they block my thoughts, my decisions, my ideas from traveling
Anywhere at all
While you deaden your senses to the world

I wish you'd see. The closing in. Darkness.
Or the narrowing confusion of not knowing what is around.
Not being able to rely on whether something is truly there or not.
Not knowing how far it is.
Or even knowing that there is so much more vision out there than you currently understand.

I wish you'd believe me. The pain. The blankness. The not knowing who or what you are.
The not knowing what will happen this time. Will I be able to see? Speak? Walk?
Always planning. Always ready.
Never being enough.
The struggle of someone who at any moment might Stop.
Their motor cortex having been taken over by the migraine spreading through.

I wish there was a way that would be enough
But more, I wish you'd believe
And that there might be at least one safe place.

I wish, that maybe my senses were listened to
By someone not me

Stim suppression

Why is this done?
Do you ask?
Do you know?

Do you assume
Or even not care.

Does it matter to you why someone is humming
Why someone is spinning
Why someone is flopping to the ground, and lying there

Does it matter to you,
If these are helping
If they have reasons
Does it matter if they are ways you can learn

Do you care if someone can speak more complex thoughts, if they make a few noises before?
Or if you can notice that noises are too much, when their humming begins?

Do you care if the can manage many times as long, if they flap and hum and think
Holding out the bad sensations
Pulling in the good

Do you care about the many ways of communication of hands, of rocking, of noises that aren't words
Or do you not want to bother to learn this style, while forcing us to learn yours

Do you care about the ways that people help themselves
That people manage
That people succeed
And most of all do you care about the pain that occurs when you take all this away?

Or is the only thing you care about "it looks weird?"

"Different not disabled"

One of the first phrases I heard when I was researching Asperger's (because I wasn't aware of using the word autism then), was "different not disabled". It was saying, you aren't disabled, you are only a different sort of human. It was also saying you aren't really impaired.

In many ways, what different not disabled was saying was "you're actually the same as the rest of them". In saying "you aren't really impaired", it was denying differences, suggesting if I struggle, it is only because others do too. It was saying, my struggles are all things others deal with, if they weren't, I would be disabled.

I didn't recognize my impairments then. I didn't recognize any autistic traits. I was happily claiming neurodiversity, but had no clue any way that I was neurodiverse, and didn't realize that I didn't know.

I was 13 and was thinking that everyone else had the same interests I did, even when I was being told these words associated with the autism spectrum. The reason that they grouped together in cliques, listened to the same music, went to the mall, was that they all pretended to have these other interests to fit in with each other. In truth, they all had my interests. The difference was that I didn't care about fitting in, and preferred being myself.

I was different, but at the same time we were all the same.

Every time I saw what was said around "different not disabled", it was "we're just a different sort, just like if you're gay". It was repeating to me there's no difference that should be talked about ever, and yet talking about it proclaiming neurodiversity. It was saying we didn't need any sorts of help ever, we just needed people to respect us.

My understanding of myself was held back so far hearing these words. I didn't recognize who I was. I kept being told "you're just like them", even when I wasn't. I kept being told I didn't need help, when I did. I was told I wasn't disabled, and I am.

I was told if you needed help, you couldn't have strengths, that if you had strengths, you couldn't need help. I was told that disability is to be ashamed of, and that someone who is neurodiverse is innately different than someone who might ever use an app to help them speak. I was told many things that aren't true and held me back.

This isn't just me. I've heard others say the same. That entering into the online autism world and finding those speaking about how we aren't disabled, had hurt their ability to understand themselves and the world.

Disability might be caused partially because of the society we live in, but that doesn't mean that people don't need help. It doesn't mean that people should deny the differences they do have, and try to push through trying to do everything on their own, never trying to even adapt. Disability isn't a word saying a person is lesser, that a person doesn't deserve life, doesn't deserve happiness. It's just our sort of difference - our one which does have dramatic downsides, a community, and people treating us poorly for being how we are whether or not we recognize who we are, and whether or not we are open.

Taking away the disability label only takes away self-awareness, possibility for adaptations, resources for growth, and community. It doesn't protect me, it only protects others who don't want to let me be disabled.