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.

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.

"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.

Accommodations

"We can't do anything for you" means "We don't care"
Or "you look normal"
Or "Any effort at all we will say is too much"

How many times have I heard this?
Refusal to help
Ignoring what I need

Invisible.
But that doesn't mean that I don't need my accommodations
It just means they get away with it easier

As once again my path in life changes because of the same refusal
To let someone possibly be capable of doing what they are capable of
I wonder if it is worth asking
Because every time I'm told the same things

"We can't do anything for you"
Whether it is sitting me in a room by myself
Or putting up signs saying not to spray perfumes

Actually doing your jobs is too hard
So instead you make my life harder
Push me away
And make it so that even when I'd help you, I can't

It's not even better for you this way
It's just so much harder for me.

I am not a burden (Day of Mourning 2014)

I am not a burden. I need to repeat that, because the opposite is told to me too frequently, and digs in, and catches hold. I am not a burden.

I am autistic. I am disabled. I am not a burden. I am a person.

You were nine years old. You had a life ahead of you. Then you didn't. You were a person. Not a burden.

You were twenty-four, or ten, or fifteen, or forty. All of you, you had lives ahead of you. And all of you were PEOPLE, not burdens.

None of us are burdens. No matter what's said to us.

It's not okay that you were killed, that you were murdered. That your lives were snatched from you, just because you were disabled, just because you were different.

It's not okay, that people are saying that it is fine that this was done because you were a "burden" and that you made your family's lives too difficult.

It's not okay that people think that our LIVES are less valuable than theirs.

It's not okay that people speak ill of the dead, justifying the actions of murderers.

It's not okay.

I'm not a burden. If I were murdered, would they care? Would society just say, that she doesn't work, that she's just autistic, that she makes people take care of her, that she's not a real person?

When I'm kicked down and abused, am I the one at fault, or is the abuser? Is it because I'm autistic that I deserve it?

It's not okay.

Every time someone says that I am a burden, I need to step up and say that I am not.

Every time that someone says it was not a big deal to kill you because you couldn't speak, I need to step up an speak, because I have a voice, that you do not, because your life was prematurely ended.

Every time someone says that the parents lives are too hard, so its not unexpected for them to do these things, I need to step up and say that autism isn't about the parents, and murders are about those who's lives were taken. Because disabled people are people too.

And every day, I need to work to make autism, to make disability, to make being different in any way, something that is treated better by people around me. Whether on the bus, in a school, or at my home, I need to say, it is not scary to be around someone who is different, but it is important to treat them the way they need to be treated, rather than the way the average person is treated.

I am not a burden. You were not. The rest us of who are living are not either. I need to hope that there are no more of you, no matter how unlikely that will be at the moment, because maybe, hopefully, you were the last.

Nobody deserves to be killed by a parent. Nobody deserves to be killed because they are disabled. Nobody.

I'm sorry it had to happen to you.

Handflapping

I don't remember flapping as a child.

Of course. I also remember it being easier to communicate, and all signs point to me being one of those unusual people who as they go through adolescence and early adulthood, get more stereotypical autistic.

Either way, I don't remember flapping as a child. I might have handflapped some, but I don't remember doing so. I know that in high school and since then I've had stims, and I'd assume I did before then, but what they were wasn't necessarily hand flapping.

I hand flap now. Mostly when alone, but not only. It varies entirely on what's going on.

But, the more I read about what people have gone through, the more I read, about Quiet Hands, the more I read about people having stims taken away and them ending up self harming, the more I end up hand flapping.

The first time I remember handflapping was after spending time with someone who flapped - it was like I picked it up from her. I started using the stim that she was using. From that, it started generalizing. I started having multiple different types of flaps. I now have an excited one, a hurrying one, a wanting a communicate one, a "this person gets it" one, a "I'm proud to be autistic" one (which comes out after reading well written things by autistic self advocates).

And while I don't remember flapping as a child, its a stim that feels like I can communicate through. Of all my stims, its the best to communicate through.

It makes so much sense that people hand flap.

I'm doing it more and more. And I'm not ashamed.

Because, really. Communication is communication. Curling up in a ball because you can't speak, is communication. Typing, and making your phone speak is communication. Hand flapping excitedly is communication.

Whoever says it all has to be speech is just wrong.

I can flap and people can learn what I'm thinking from that.

Quiet Hands might mean to many that they need to stop.

But to me, it means if they got hurt, then really, there's even more no reason to not be open about who I am as this becomes more and more natural. It makes me want to hand flap. It makes me want to not only show who I am, but use my hands to do so.

Flap away.

Neurodiversity [and disability]

There was a post on wrongplanet asking about neurodiversity and disability. Are they mutually exclusive? How do they relate?

And really, looking at how people talk about it, it doesn't seem like people understand disability as part of neurodiversity.

So I responded. I responded the following:

Neurodiversity is about saying that disability doesn't mean lesser.

I am disabled. I am not a lesser person because of my disability. I cannot do everything that others can. I will never be able to. I will always have needs that others will not. I will always be disabled and not just different.

But that doesn't mean that I'm not good enough. It doesn't mean that I'm not human. It doesn't mean I'm less than someone who's not disabled. It doesn't mean that I need to be cured.

It means that I'm a disabled person.

And neurodiversity means embracing those differences. All of them. Disabled or not. It means saying that someone who needs to read to learn and someone who need to listen to learn both matter. It means someone who can't see a florescent light without getting a migraine matters. It means that someone who needs to use tools to remember what they're doing day to day matters. It means someone who doesn't know how to interact socially matters. It means that we're all people.

It means that disability isn't being broken. It means that disability isn't being wrong.

But its a concept larger than disability.

It means that being different isn't being wrong. Disabled or not.

That's what it means to me.

I'm disabled. I'm not less than someone who's not. I'm just me.

And people agreed. And people disagreed. People either said that high functioning autistic people weren't disabled, or they liked what I said.

But disability is what it comes down to. And its a scary word. And it doesn't have to be a scary word. An neurodiversity is saying its not a scary word.

I am not capable of the same things others are. I just cannot do things others can. This is not a question. This is just a statement. There are things I cannot do. There are major things I cannot do. The fact that its not a big deal doesn't matter. The fact that there's a lot I can do doesn't matter. The fact that I work around it doesn't matter. There are things I can't do.

That's what disability means - that there are things you are limited in doing or can't do. Not that you can't do anything. Not that you aren't good enough. None of that. I am disabled. I am disabled by the same stuff that calls me autistic. By the stuff that makes me deal with a sensory system most people can't imagine, and by the stuff that makes my nonverbal communication a mess.

But neurodiversity says I'm good despite that. Neurodiversity says I'm not wrong. Neurodiversity says embrace those differences because differences are good, even if it means I'm disabled. Disability isn't wrong . I might not be capable of everything. But I'm capable of enough.

I'm capable of being happy. I'm capable of enjoying life. I'm capable of making a difference. Sure, I need help. Sure I'm not capable of everything that's normal. That doesn't matter. I'm not a lesser human despite that. I don't need "fixed". I don't need pitied.

I need helped. I need accepted. I need treated like another person, and a person who's needs aren't the same as everyone else's. I need acknowledged. I need to be me not someone else.

So yes, I'm disabled. But accept me anyways. I'm not broken. I'm just disabled. And disability doesn't have to be scary.

I don't want to be cured (and that's not because of privilege)

The argument about whether autism should be cured is one that really frustrates me. People on both sides tend to talk in absolutes, about how its entirely wrong for anyone to want to be cured, or about how nobody would want to be cured. Both sides are silly and extreme. It entirely seems to be something where some people will want to be cured, and others won't, where if a cure existed and people could choose to have autism removed, without pressure from others to require it, it would be reasonable. Like the people against a cure, I'm scared of the possibilities associated with one - I'm scared that a cure would be forced on people, or that people would be even more discriminated against for choosing to not suddenly have a large part of them changed. I'm scared that people who are already treated as being incompetent wouldn't be given the chance to say what they want. I'm scared that someone who's nonverbal wouldn't be given a choice.

Really, that's what it comes down to for me, is that people should be able to choose for themselves; not people choosing to make life easier for others, not people choosing to make everyone the same - people should be able to choose what they want for themselves.

Which sets the scene for where this post came from. People were once again arguing online about whether a cure should exist or not. Generally I stay out of these discussions, but this one was getting more unreasonable, effectively claiming that its wrong to ask for people to treat a nonverbal little boy as a human instead of an empty husk, and saying that anyone who's really impaired would want to be cured.

The truth is, that there are people at all "functioning levels" (though I dislike the phrase) who don't want to be cured and who do want to be cured. There are people who can "pass" without much effort on their part who would be some of the first to jump on a cure, and there are nonverbal people who don't want a cure and who will write about this. Knowing this, I had to explain. I have issues with not responding to people online when they seem actually misinformed, especially because of wanting to make sure that others don't become misinformed. This was a situation where it didn't seem like others would, but I still had to respond.

So I responded, and then thought it'd be relevant to write about here.

There are a few different reasons why people don't want to be cured. Most, if not everything, I've read describes multiple of four main reasons why people don't want to be cured

They don't want to have to relearn how to live life without autism.

Autism is part of them, and has shaped their entire life up until this point. Removing that means they'd have to near completely have to relearn how to live as a neurotypical person. The amount that would need to be relearned is often entirely forgotten or at least underestimated.

They have a strong sense of self identity

Their self identity in this case includes their autism, and they don't want to change themselves, but instead work around their issues. They want to get better at coping with the challenges, but they explicitly want to do that without removing them, because autism is part of themselves.

They want to succeed specifically as a disabled person

They want to succeed, even in a minor way, and share their abilities, as a potentially severely disabled person. There are people who are nonverbal who want to share their stories and have people learn about their abilities, about what they can do, about what they can do for others, without speaking. Doing this while nonverbal is about more than themselves, is about more than autism, and is about more than disability as a whole; its about people and how we judge each other and how we treat people based off of that judgement. Having those disabilities can make it easier to show people weaknesses they have and strengths others have. Some people value sharing that more than removing the struggles of their life.

They are happy as they are.

This seems like something that doesn't need to be stated, yet it seems to need to be stated. People can in fact be disabled and happy.

Of course this won't include everyone on autistic spectrum, but it is a solid subset of the autistic community, even once you've limited the community to those which would be legally disabled. Not everyone wants to be cured.

So to those who argue that because they want a cure everyone who is "really disabled" does, there is nothing wrong with you for personally wanting to be cured. There is something wrong with you saying that others always have the same preferences that you do. It can be hard to learn that others have different preferences than you do. It took me until my teens to really understand this - that it wasn't that other people were pretending to not like things that I liked and pretending to like things I didn't (beyond things like food), but eventually I learned. These people, those who don't want to be cured, including some of us with Asperger's, some with speech delays, some without the ability to speak, do not have the same preferences as you do. They do not think in the same manner that you do. They are still disabled; they are still struggling with things far beyond many people's comprehension; despite this, they would choose to remain disabled when given the choice.

I personally am among that group. I have impairments with verbal communication (I remember being taught in speech therapy how to use tone of voice to ask a question along with the other speech therapy that I remember all through elementary and middle school (as well as 10th grade); I will go nonverbal for hours at a time if triggered; I don't know how to discuss emotions or how to answer questions about how I feel; I can't always communicate what I'm trying to say.) I have impairments with non-verbal communication (and often feel like I have "positive" and "negative" for what I can read on people's faces). I am socially inept, and am still finding out more and more how bad I actually am at this. My hand-eye coordination is bad enough that people have literally made a drinking game out of betting how terrible me and one other person will do at video games (they're the ones who would theoretically be drinking, we're just that bad to start, its hilarious) and have had people at times think I am actually faking. I have severe sensory issues, beyond what most people realize occurs. I cannot drive and never will be able to. I cannot take care of my one bedroom apartment on my own (and am really lucky that my boyfriend is entirely comfortable doing the parts I can't, because cleaning a bathroom isn't an option for me). I am applying for SSI for disability because every professional who's attempted to help me find a job has told me that either I should apply or that they just have no clue how to help me. I am without question disabled.

Yet, don't want to be cured. If I was given the option of removing my sensory issues, I'd almost certainly deny it (though I would ask for my migraines to be removed). If I was given the option of removing all of my ASD the question would be even simplier, there is no way that I'd make the decision to not be autistic. My reasoning personally falls into all four of the above areas.

My Asperger's doesn't make me unhappy. Certainly it makes me have to deal with things that will make me unhappy that other's don't have to, but it doesn't make me unhappy. I can't say I'm always happy. I'm human, I deal with problems that I don't want to mention on things like this forum that will make me unhappy, but overall, I know that my life isn't bad, and I know that I can get through the periods of time that I'm unhappy and get back to my default optimistic, happy, autistic self.

How I go about my daily life is absolutely dependent on my ASD, both in things I avoid, and in things I do. It would be far more difficult than people realize to have to relearn how to do things as complete as how to do dishes and those activities people take for granted.

I have an incredibly strong sense of self identity. I am Tuttle. My asperger's is part of me. I am autistic. I am me.

And something that I've only recently learned - my ASD has given me abilities because of the impairments. I don't mean despite the impairments. I don't mean that I got random gifts with it , I mean the impairments themselves are along with impairments, abilities that others don't have. The fact that I can't walk to the grocery store (a quarter mile away), and back without disassociating if its night time is not a good thing. It's not a gift. And yet, having to deal with that, knowing I deal with that, and sharing that I deal with that, has given me the ability to affect other's lives in positive ways that someone without that would be unable to do. People who disassociate for entirely other reasons have been able to learn from me. Professionals are able to tell parents things that their children are dealing with, such that the parents can change their actions to ones that aren't problematic for their child. People can learn. People can change. People can have happier lives, whether or not they are autistic, because of my impairments. How could I, personally, say that I'd take my life being easier, not necessarily any better, but easier, in exchange for not being able to continue learning, and continue sharing, and continue helping others because of these challenges? How could I say that I'd take my life being easier in exchange for other people's lives being less pleasant? It's not something I could do.

Not everyone is called to that. Not everyone has that manifestation of autism. Not everyone is called to put others before themselves to the point where it is actually likely a weakness. Not everyone has the interest in determining what they about themselves, and using that to share information with others that they didn't necessarily have. But some of us are. And the fact that we are impaired, the fact that we are disabled, the fact that some of the people I've read blogs of are nonverbal, does not change that part of us, the part that would choose a hardship for ourselves for the ability to make a difference in improving others lives.

When you really think about it, any cure would be a question of trade-offs. A majority would sacrifice some abilities that are associated with autism for those associated with being neurotypical. (There are known things that autistic individuals do better - for example processing visual data, autistic people still notice things out of place that they're not explicitly told to look for when there is more data that they're purposefully looking at while neurotypical people will not.) All except making people actually process information the same and just have better coping capabilities would lead to people needing to relearn self care skills. All would require choices of changing oneself.

It's a trade-off. It's a reasonable question for individuals to have their own answers to. In my case, I don't want to be cured, and that's not because of me not having reason that would lead others to make a different decision, its because I'm me and this is my decision.