Monday, August 26, 2019

SLPs aren't the only choice, aren't always the best choice

I have mentioned on here before that I had abusive speech therapy as a child, though I didn't go into all of the details.

My entire life has been knowing how speech is the only option. It doesn't matter how much I communicate, it matters that I speak, and that my speech sounds right. It matters that others are comfortable with me, not my comfort. I was taught this. And no matter how much I know this is wrong when I say this, when I go to try to say something, that is what I've fallen back on, it is so deeply ingrained.

So when I got to AAC, it wasn't from SLPs. It wasn't from professionals at all. Professionals kept trying to force me into their boxes. Professionals kept trying to mold me into what they wanted. Behavioralist therapy does that. Behavioralist therapy leaves those scars. And none of that was about who I was, what I needed.

When I got to AAC, it was autistic adults sharing with me things I might need. It was AAC users helping me search and find things that might help. Professionals, every one of them, even with me explicitly saying this is something I need, would deny my need, would refuse to help, while AAC users would help me through the process of searching, evaluating, finding ways to figure out what was a good idea, finding out how to afford AAC.

Professionals are held up as all powerful, but the only thing I have gotten from professionals is pain. The only things I have gotten from the professionals is making it more difficult to communicate. The only things I have gotten is denial of my AAC needs.

And now here we are, with doctors wanting to send me to an SLP. With me using my AAC to communicate, and yet again an SLP being seen as the solution.

Nobody asks me. Nobody listens when I say I don't want to go. Nobody respects this, they just keep telling me that this is something I should do, because speech is all powerful, because lack of speech is a problem. Nobody lets this be my choice, even when they are saying it is.

SLPs are seen as how to make someone communicate, but the communication I am having isn't being listened to. The communication I had as a child, wasn't listened to, and I was abused for years, to try to make me "normal". The communication that is occurring now, saying I am not comfortable with this, isn't being listened to. SLPs are seen as too powerful, too important, too valuable, because speech is too valued, for some random disabled person's communication to be seen as meaning anything.

I have communication. I have always had communication. Respecting that communication is important, and taking power dynamics into account is necessary. The power dynamics of speech therapy is huge. The power dynamics of learning AAC doesn't have to be.

And we act like AAC is unknownable, unlearnable, impossible, without professional involvement, yet, AAC is entirely doable on your own. I never saw a professional for AAC, and I have my AAC. I have multiple AAC options. I use AAC regularly. My AAC is not somehow non existent because I never worked with a professional. My AAC is not somehow not existent because I got dedicated AAC as an adult.

Oh "but oh, what about those people who need it". Those people? Those people who "can't" use AAC otherwise. Yes, we have an ableist society where you can't afford so much assistive technology without insurance covering it (and where insurance won't cover any assistive technology for so many people), but that isn't because people can't use AAC, it's because they can't afford it.

Is there benefit? Sure. Sometimes. If you want it, its not abusive, etc, etc, etc. But it's not always the best choice. It's not necessary. It's not about people being "too disabled", some "needing it" and others being "not disabled enough" for it. It's about people having choice, even when the way they communicate is different than you first expect.

AAC is approachable without professionals. It means figuring out what people need. It means figuring out how to access what people need. It means figuring out setting up AAC. It means figuring out how to teach. It means figuring out how to learn. And that is absolutely a lot. It isn't that AAC isn't a lot of work. It is that professionals don't have some magic knowledge that isn't possible to do without.

You can evaluate what you need, what your child needs, what your friend needs, what whoever needs. Professionals don't know needs better than someone who is themself going to use AAC. A professional who watches for an hour doesn't suddenly have more information than people who care to communicate for years. Professionals have experience, if they are any good, and nothing to active abuse if they aren't. Evaluation comes from knowing, from paying attention, from looking into what this means. This isn't something only an SLP can do.

You can evaluate options. You can go through looking at what is available. You can research. You can talk to people who use different things. You can research. The internet is available. There is all sorts of options out there.

You can set things up, even with all the work that is.

You can teach, and you can learn. Even with the fact that learning AAC is hard. Even with the fact that learning AAC is a process. Even with the fact that learning AAC comes with different people needing different things to help them learn. And when help is needed, help can be accessed, even by those who aren't professionals. Sometimes this is by asking for advice, sometimes more hands on, someone else helping out more directly, but professionals aren't innately needed. Professionals can help, professionals can be useful, professionals aren't the only option.

You can use AAC without a professional. Sometimes that's the best thing to do. Sometimes that is the only option, either because there are no professionals around, all professionals around are abusive, all professionals around will only focus on speech and deny AAC, all professionals around refuse to see you because you are "too high functioning".

You can use AAC, because you can use AAC. You can help your children, your friends, your family (whatever that means to you), use AAC. You don't need to wait for a professional who might just abuse you.

And beyond that, you don't need to always try to search for the SLPs, when you have that trauma, when you know that trauma, when you live that trauma. When you have the trauma, of people trying to change you, of changing you, of forcing you into being who they want, you don't need to go back to those professionals, even if they are now supposedly good ones, you don't need to trust. Because, there are just other options.

And not only are there other options, for some of us, those other options, are reliably more effective.

The internet, autistic adults, AAC users, are how I got my AAC, are how I learned my AAC. And that is entirely fine. There is nothing wrong with that. There is all sorts of help I have gotten, that I see happening all the time. People get AAC because they are figuring out it is an option. People get AAC because they are learning how.

Communication is communication. It's not dependent on some people to get paid to tell you what is acceptable ways to communicate. Learning more ways to communicate is great, it still doesn't need pathologized, or professionals at all.

Wednesday, August 21, 2019

"but don't you wish you could speak so you could..."

I keep being asked by people who want to push me to speak is "isn't AAC so much harder than speech" or "aren't there things you can't do with AAC?"

I'm often prompted things I might want to be able to do if only I could speak, saying aren't I worried I can't speak because that means I can't do these things. Every one of these things I can do, and have done. Oftentimes more effectively with AAC than speech, because typing to communicate is just so much more effective for me.

I'm told things I can't do with AAC under their assumptions, being "don't you wish you could speak so you could do these things". And yet, I do them. Effectively.

The ideas of what I can do, aren't "I can't speak", or "I can't do something because it directly needs speech" or even "I need to find an alternate route sometimes". It is "clearly this is impossible, clearly we need to push speech"

I'm a college-educated adult, who has been at least aware of autistic advocacy circles for over 15 years, and this is everyday interactions for me currently.

Fear mongering surrounding how speech is necessary for survival is huge, everywhere, and literally the biggest challenge that I am facing at the current moment - not indirect things caused because of it (I avoid enough people and places already for other reasons, I already have enough plans on how to do things myself in place because I've been working on this for long enough) - directly the exhaustion of needing to hear it, over, and over, and over again.

Society is that overwhelming about speech, hatred of even a moment without it.

Questions I have been asked have included things like "Don't you wish you could speak so you could ask for help if you needed it"

Ignoring that I literally am asking for help more effectively than I have ever before in memory, because I ask for help more effectively using AAC, am unlikely to ask for help in the first place even if I should, and if it is a situation that I am pushed to the point where I will need help immediately, I am unlikely to have ever been able to speak, there is absolutely no reason that asking for help is associated with speech anyways.

I have asked for help from people across the world because of the internet, and it didn't matter that I wasn't speaking. When in the same location, I have a tablet, that can vocalize, with multiple apps, depending on what my current communication needs are. In the past I have done things like using my medical alert bracelet to point out to people allergic reactions in order to get treatment. I can get help, I have got help, using all sorts of manners that aren't speech, and generally find them much more effective for me.

But, speech is viewed as necessary for things as simple as asking for help. The idea of communication, of doing things at all, in other manners, even when I am actively doing so, doesn't cross people's minds. Fear, pressure, those are how people are interacting with me. Trying to scare me into how dangerous it is to not speak, this is the normal interactions I'm having.

I'm not being asked how I teach with AAC. I'm being asked don't I want to speak again, so I can teach. Or told, I clearly need to be speaking because children would be afraid of my AAC. None of this has any relation to my reality, to what I do, have done for years. Saying children will be afraid of interacting with me because I'm disabled - I'm not less disabled when I'm speaking. I always have needed plans for suddenly switching to AAC, I have used it in the past, I've taught with AAC now, its not a huge challenge, it means somewhat different planning. It means planning that I need to put into things, in order to do anything, because others don't expect for someone like me to exist at all. So, when others realize, they don't as how, they assume its not possible, they assume I don't exist. Yet again. Like always.

I'm asked, told, had it assumed, that speech is always easier. That speech would always be easier. Had it pressured upon me how much of a burden it must be to not have speech for even a moment. My truth is that I have been finding it immensely helpful. I have been finding it a time I can learn communication I have never managed in my life, no matter how much I have struggled, because speech has been so prioritized, at the cost of everything else, at the cost of whatever it does to me. I have found it is a time to not only heal from a concussion and not be so overwhelmed by the world because speech makes things so much more overwhelming, but to find ways to communicate better, long term, not in terms of new AAC apps, but in terms of, better understanding myself. Because speech isn't always better, and I've known that, but I've not known how to respond to myself, how to respond to the world, when I have had speech pushed so hard.

I'm being told now, that speech is always easier, and yet, right now, when I'm not speaking, is the first time I'm being able to even start to think about making decisions about things like what I want to eat, what I want to do in the day, what makes sense to me rather than asking others what to do, because I am not so overwhelmed by trying to figure out how to say any ideas that might come to mind that I can't get to the figuring it out. And these things, while they aren't things I am consistent at, while they are difficult, while I am able to get bits and pieces out and not everything, are things that will help me later too, because I am finding other ways to communicate, even when those other ways are ways I have already known, because they are sorting, organizing, and having it make sense, the ways that things fit together. Because speech isn't always best. And not speaking is sometimes meaning I can do more.

I'm being asked about how much I can't do because I'm not speaking, and I can't come up with anything at all I can't do, besides speak. I can communicate. I have other ways. But there are so many other things I can do better now. Because neurodivergent brains are neurodivergent, because what is expected isn't always what is best, because speech is prioritized because it is what is easy for others, not because it is necessarily good for me.

Don't I wish I could speak? Not really. My speech will come back as it does, and by the time it does, I'll hope I'll have built enough routines, practiced enough, have enough people be little enough afraid of me, that my part-time AAC use will be a larger percentage of the time than it was. Because I don't wish I could speak right now. I wish that I knew all along how to use my AAC more efficiently, and I am so hopeful that this is finally how to let me do that.

Tuesday, August 20, 2019

My AAC isn't for you

I've been a part-time AAC user, for I don't know how long (sometime around a decade using dedicated apps is my best guess), and yet many people in my life had managed to overlook, forget, or ignore this fact, because they didn't want to see me as such. To them AAC was for others, not for someone who communicated like I did (the fact I tend to spend multiple hours a day unable to use mouthwords aside, that isn't convenient for those who want to judge on the mouthwords you do produce, or how "articulate" your writing is.

This is relevant at the moment, because right now they can't ignore my AAC use. Back in May, I got a concussion, and I have had post concussion syndrome. While others around me have been stressed out, thinking about how hard it is not to speak, I haven't found there to be much of a change. I use my AAC - I have always had it with me anyways, I've used AAC regularly anyways. I use ip relay to make phone calls - I can't pick up the calls made to my cell phone unless I want to try to handle it on speakerphone and responding via typing on my tablet, but making calls is fine, and I had relay and used relay before. I have not added anything to my toolbox, using AAC full time for the past few months, I just use it more regularly. The only difference is in how people see me.

Because before, others wanted to deny that I was using AAC, and now they can't. Now when they are trying to deny, what they are trying to say is that I will be "fixed", I will go back to "normal speech", ignoring that I never had normal speech, and they are finding they can't do that. So how others around me see me keeps morphing, changing, with them realizing things that have always been true, with them trying to make me out to be what they want me to be, realizing they can't, trying to force it anyways, it failing again, over and over again. None of this is about me using my AAC, none of this is about what I need to do, or what I can do. It is all about the expectations that speech is default, the expectations that speech is preferred, the expectations that part-time AAC doesn't happen.

And these expectations of others, keep returning to trying to make me into what they want, more than anything else. They want me to speak, not only because it is easier for them, but because that makes me fit into their world view. Someone who teaches is someone who speaks, not someone who uses AAC. I shouldn't be an AAC user. Someone who they turn to for advice shouldn't be an AAC user (but who better to know about AAC than AAC users, people are the experts on themselves). I am not who they want, who they expect, who they see as who should be, an AAC user. That is too other. I am not supposed to be that visibly disabled.

The only reason I am not always that visibly disabled is because I am erased over and over and over again.

These expectations keep returning to people wanting to make me into someone who speaks for them, not for me. Not because it is easier for me. Not because it would make my life better. But because it would be easier, nicer, more pleasant, for others. They say as much. Directly.

My communication isn't there to make others comfortable. My communication is to let me communicate. My communication is how I want to communicate. My AAC is for me. And I don't care how much me having used AAC for a few months makes people uncomfortable, it has been easier to communicate in some ways than it has ever been in my life. And while I do want to speak again, and do want to be a part-time AAC user, not a full-time AAC user, my AAC use or non-use choice is not about others comfort, its about how easy things are for me. It's about how I can communicate what I want to communicate. It's about my life, my choices, what helps me. Not about being seen as disabled by people who somehow manage to pretend I am someone I am not.

Tuesday, July 23, 2019

"just bring a straw with you"

Disabled people are told all the time to just carry straws with them if they need them. To make it a burden on them. That other people can't think about accommodating. Often this includes forcing reusable straws which there is so much written about I'm not going to spend any spoons searching for and linking to anything about it. (No reusable straws aren't a feasible option for everyone. They are for some people. Okay, sure, if it is for you, then feel free to use a reusable straw. They aren't for everyone. Don't tell people to use a reusable straw because you can use one. Not everyone can.) Even when it doesn't it goes into, you can just buy one time use straws and carry them with you instead of expecting others to cater to your needs.

I mean, yes I do expect "catering to my needs" when that is basic accommodations. I'm not asking for special treatment. I am asking to be able to drink liquid and eat food.

But anyways, why I am writing this now. Today I had a scare of losing my cefaly. This is a multi-hundred dollar piece of equipment that is one of the major parts of attempting to keep me my migraines more controlled. I need to carry it with me everywhere. This is something I actually need to carry with me, unlike straws, because I need this piece of medical equipment with me everywhere I am, and its not something that is other locations can provide for me (for one thing I need it when traveling place to place, for another, I am not expecting places to have an eTNS for migraines, am expecting them to have straws). And because attempting to manage and carry so many different things that I need to carry everywhere, I lost it. If I lose this, if I don't have it, my migraines spiral out of control (not that they are in control ever, but out of what I have towards control). Because I can't take triptans or DHE, my cefaly is the only thing I can use when my migraines are severe enough I need to use something in the moment, immediately, now. Not having that is a big deal. If I'm not using it regularly, the number of falls I have dramatically increases. If I am not using it regularly, my auras get even more severe (and I am talking as someone who has gone 10 years without breaks completely leaving aura, jumping migraine to migraine with complex extended length auras.) It is a big deal for me to not have access to my cefaly always.

And I lost it. I have managed to find it before writing this, but the point still stands that I lost it, because I am required to carry so many things in order to try to exist in public. That I need to carry a backpack full of items in order to simply make up for the fact that places won't even try to accommodate me, not to mention try to be accessible, and still end up having it cost such an unreasonable amount to do anything.

And people keep telling me to add yet another thing. Yet another thing to a bag where I have lost necessary things from, because they need me to carry literally so much weight it has me in constant pain to carry. Yet another thing to a bag that I am losing things I need. Yet another thing to a bag, where my cefaly isn't even the only thing I have recently lost, and other items haven't all been found, other things just are easier to replace if it comes to that. Yet another thing that is more work, more executive functioning, and more something will fail, and who knows what.

It's not just straws. It's everything. It's needing to do everything. It's needing to fight to exist. It's not having things be accessible. It's not having anyone accommodate. It's the fight against accommodations being so strong that people won't possibly think that someone who needs a straw can have one, because of being too much of a burden, and not caring what it does to us. If it hurts us, that doesn't matter. If it is the straw that breaks us, that doesn't matter. We aren't human anyways.

You aren't asking me to carry a straw. You are asking me to carry more than I can, I'm already trying to find ways to carry too much.

Friday, March 29, 2019

Ow? What is pain I do not know, and yet I have chronic pain

"Rate your pain on a scale of 1-10"

"I don't know"

I'm always in pain. I don't know how much pain I'm in. Pain is life. Pain doesn't make sense to me. Pain is always there but how do you process it, it is nonsense.

I'm told to rate my pain. I don't know how.

I'm autistic. I also have chronic pain. I'm autistic. I also had disabling pain as a child.

I don't understand pain.

I don't know any other way to exist.

There's a lot of talk about how much autistic people process pain differently, and I can't see those conversations and not wonder, but how much would we actually be able to process pain if our pain was treated, if our pain was listened to, if our pain was taken seriously?

I'm autistic. My pain doesn't matter.

I started having disabling migraines at age 7. They weren't frequent then, but they were extreme in how painful they were. I have memories of that, even if I can't comprehend the pain now. I sprain my ankle walking on flat ground. My body doesn't listen to itself. Pain is just something that happens. I don't know if I ever had a way to explain pain and have it understood, have it listened to, have it comprehended and taken seriously, rather than just being something that wasn't a big deal to everyone around me, so it should clearly not be a big deal to me.

I'm autistic, if I can't explain then it isn't real.

I grew up pushing through pain. I don't have memories of how much pain I had at what ages. My childhood memories aren't that clear. I know that by the time I was an adult I had multiple forms of chronic pain. People talk about diagnoses and treatments and things for pain. This feels like a mystery an imaginary thing that doesn't really exist.

I'm autistic. Nobody listens.

I grew up pushing through pain. It was the only way I had available. It was how I could exist. It was how to survive. It was the only way I could get through day to day. I don't remember details, but I remember this. I don't know if others knew when I was in pain if it was anything other than the migraines that shut me down completely. I don't know if they ever knew there was a possibility of pain.

I'm autistic. Nobody thinks to ask.

I grew up pushing through pain. Now I deal with the consequences.

People talk about pushing through pain like it's a good thing. Like it's how to manage to get to do things you want to do. Like it's ways you can manage to take less meds, and like meds are awful things. People talk about pushing through pain like it's a way to make everything better. It's what I did because I didn't have any choice otherwise.

Now I deal with the consequences.

I don't understand the concept of pain.

No really. I don't understand the concept of pain.

I mean it. I don't understand the concept of pain.

This is more than not being able to rate on a scale of 1-10. This is not recognizing that dislocating a joint means maybe I should actually go to the hospital. It's not like my body is actually telling me I should. This is pushing myself past boundaries, not noticing how injured I am, forcing my body through situations it can't be in, because I don't know the difference. I don't have a warning signal.

Pain is a warning sign. Mine was taken away.

I grew up pushing through pain. Now I deal with the consequences.

I need others to watch out for me. I need to analyze. I need to watch the signs that aren't pain. Because pain means nothing. I don't know how to use pain to keep myself safe.

This is dangerous. This isn't a good thing that pushing through the pain lets me do. This is a terrifying reality of needing to survive and finding ways to survive.

But I'm autistic. So I just process pain differently.

I'm autistic so I just "have a high pain tolerance".

What if people just paid attention to my pain?

What if I didn't have to survive in a world where pain was an unrelenting reality of pushing through with no possibility of anyone even recognizing it existed?

Because dissociation is my life now. I dissociate from pain constantly. I dissociate to survive, because dissociation is survival. Dissociation means not fighting my body in more ways that I can fight it. Instead I just don't have a body. I'm just a being who lives in a meat shell that happens to exist here, that I am using to interact, because I need some way to interact.

But I'm autistic. So dissociation is pathologized into processing differently.

What if I was just given the chance of not needing to?

What if I was allowed to have a body?

What if I was allowed to survive in a way that wasn't needing to dissociate to exist in a world so hostile to me?

I'm autistic, and I have chronic pain. And I don't know how my body works with pain. I don't know and I can't know, because I can't have the option of understanding how my body interacts with things like pain. I need to separate myself, because I need to exist, and I was never allowed to do anything but find ways to exist. And this was how I could.

But, now that means instead, it's all because I'm autistic.

And not because I have pain.

And how many other autistic people is this happening to instead of anyone listening?

Thursday, March 14, 2019

Rigid Thinking

It's claimed that autistics have this rigid "black-and-white" thinking. That we aren't "flexible enough" in how we think. That we need to learn how to think how others do, because we don't understand how to think outside of our own ways.

Allistics are just as rigid in their thinking as autistics.

Oh you autistic person, you need to learn how to think how someone else does, you need to think in their way. Well, we're already doing all that work. Allistics aren't doing anything to learn to think and try to accommodate us. How's that for "black-and-white" thinking. We must be entirely like them. We must do everything their way. There cannot be accommodation. There must be assimilation. We already know that. That's not autistics being rigid.

Allistics make all sorts of claims about how rigid autistics are, and don't listen to us. They claim that we can't be listened to because we're just being "rigid" and yet they are claiming "all autistics" this and all autistics that. They claim none of us can do things, all of us must do things, none of us can be listened to. Listening to allistics speak about autistics is listening to rigid speaking in extremes.

And in general this is how things work. Sure, autistics are rigid. People are rigid. Rigid is about controlling your environment, controlling what's around you, trying to make things acceptable for you. What is "acceptable" varies, but that's what people do, whether it is requiring routines to get through the day, or refusing to listen to anyone who makes them question their view point. Being rigid isn't an autistic thing. It's a human thing. Being rigid is pathologized in autistics. That doesn't mean that only autistics are rigid. That doesn't mean that others aren't.

It means that allistics get away with being rigid, and push us aside because we're being "too rigid", we need to change, we need to do things their way, even when we're doing most things their way anyways. It's yet another reason they are listened to over us, you can't listen to someone who isn't flexible enough right? (But it's not like they're being flexible). It means that our rigidity is pathologized and theirs is ignored.

And autistics use this as an excuse too. They say rigid thinking is just how it has to be. It's "just" autistic rigid thinking. "Oh, I'm not transphobic, I just can't comprehend the existence of trans people existing." I mean, it's not like allistics don't do that to us too. It's not like we aren't screamed at repeatedly about how we simply don't exist, and how that's not 'transphobic' it's not like they hate us, they are just claiming we don't exist, they don't want to hurt us, ignoring that these statements do hurt us by denying our existence. But it's "just rigid thinking". Even though it's the same patterns. Even though in both cases it's people who are refusing to acknowledge someone who is outside the bounds of what they consider "normal", and they are claiming only "normal" people exist. It's the same rigid thinking.

It's not autistic to not know things. It's human. But when it's called autistic, it's now a symptom, it's now something which is pathologized, it's now something that is wrong about us, and it's now something that people claim is just a part of who they are so they don't have to bother thinking about whether or not other people exist.

Time and time again people are just like "oh it's just autistic rigid thinking" in order to claim it doesn't matter the abuse that people are doing, to excuse the oppression." That doesn't change what it does to us. That doesn't change what it does to everyone who this is said to. That doesn't make it somehow just an autistic thing. And it doesn't make it somehow a thing that is an immutable fact of the universe that autistics can't grow, can't learn, can't change. We are human too.

Autistics can hurt people. Autistics can abuse people. It doesn't matter how many times you say "I'm not tranphobic but" or claim some other -ism isn't happening because of "rigid thinking" excusing it.

When you say to me that I don't exist that hurts. You can't claim it doesn't. You can't claim that it shouldn't, because you're autistic.

And "but rigid thinking" will not change that.

In both cases, this is people being people, it's not autistics, it's not allistics, it's how we pathologize just a human trait. It's who gets treated how. And in both cases, I'm told I can't be listened to, I can't exist, I shouldn't exist.

Because rigid thinking makes it so.

Wednesday, March 13, 2019

ABA is always abuse.

Aversives aren't what make ABA abuse.

ABA isn't abuse because of lemon juice being sprayed in mouths (though that is abuse), because of the JRC shocking people (though that is abuse and shut down the JRC), or because of Lovaas slapping people for handflapping (though yet again, abuse).

ABA isn't abuse because of aversives existing. Remove all aversives, and ABA is still abuse. It is not abuse because of the history of aversives.

All ABA is abuse. ABA is abuse whether or not aversives are part of the program. ABA is abuse no matter how prettied up it is, no matter how much it is "but we aren't like them, we don't do those things anymore". Because ABA is about controlling people, about changing people, about not letting people be themselves. You can be pretty and manipulative. You can give people gifts over and over and over again, to make them who you want them to be, and this is still abuse. ABA isn't abuse because of aversives. ABA is abuse because of the entire base point of ABA.

All of that "but not my ABA" or "ABA isn't like that anymore". Sure, your ABA might not involve squirting lemon juice in people's mouths for not speaking "correctly", but it does include things like taking everything loved, and making it only accessible if earned.

That is abuse.

It does involve things like making things necessary for regulating your body, for regulating your mind, and making you earn them.

That is abuse.

It does do things like tell people over and over and over and over and over again how wrong wrong wrong wrong wrong wrong they are. (Even when you use checkboxes where they are seeing whether they are doing "good" or "bad" today)

That is abuse.

And beyond all this, at the base level of all this, it doesn't matter the methods. Because what ABA is doing, is taking someone, and taking control of them. These are just some methods used. And taking control of another person is. just. straight. abuse.

ABA is about saying that your body is mine, your brain is mine, you will do as I say. Stand up. Sit down. Don't move you hands. Say these words exactly. Do what I say.

ABA is about taking someone and molding them to who is wanted. Changing them to who is wanted. Not letting them be who they are.

ABA isn't about teaching. It is never about teaching. It has never been about teaching. It is about control. It is about making someone who is wanted by someone else. Sit up straight, repeat after me, earn your candy.

It doesn't matter whether you do this by spraying vinegar in someone's mouth, or whether you do this through praise. Controlling someone, changing someone, making someone into a model of who you want, is abuse always, and can only ever be abuse, because of the entire concept at it's core. You cannot mold someone into a being you want with "love" and not have it be abuse.

Abuse is not only physical. Abuse is not only getting in someone's face. Abuse is also controlling what you do, when you do it, how you do it, who you are.

This is true in all situations. This is true with ABA. ABA is abuse. It can only be abuse. It is always abuse.

There is no such thing as non-abusive ABA. There is no "but my ABA" there is no "ABA is friendlier now".

There is nothing that will ever be friendly. Nothing that will ever be acceptable. Nothing that will ever be non-abusive, that is at it's core about controlling and changing who a person is into who you want them to be. And that is what ABA is.

ABA is always abuse.

Monday, March 4, 2019

who has no empathy?

I have migraines. I get migraines all the time. I get migraines from everything. People ask me my triggers, and I laugh and reply life, because I am triggered by so many things. I'm a migrainer. My migraines are inherently part of me.

I get migraines everywhere. If I leave the house, I react to something, to everything. If I stay home, I'm still not safe, though there are fewer triggers, there are fewer things that can go wrong, there are more things I can control. My life in many ways is planned around my migraines. What can I do, where can I go? what do I need to keep myself safe? how much can I do before I cannot keep going? how many plans upon plans upon plans need to always be made? How will people react, and how do I need to plan on dealing with others?

Because people are always a wildcard. People come with triggers. People are dangerous. People don't listen. People don't understand. People won't take me seriously, won't treat me as human, won't respect me. People are terrifying and are everywhere. And yet, I am lonely and don't want to always be alone. How to I plan for people when I don't know how my body will react this time?

I can't trust them, experience has taught me that, and yet, experience has also taught me that those who treat me worst are those who's jobs claim they care for us, and those who treat me best are those who "have no social skills". Those who "work with disabled people" lead to trauma and fear of leaving the house, and the children who I hear adults all around me speaking about how much they do not know, cannot understand, will never do, show me so much love that years later it makes me less afraid to face the world.

It was a special education paraprofessional who learned that cigarette smoke was a major migraine trigger of mine, and every time she would go out for a cigarette, would return, to follow me as closely as she could, even when she was supposed to be in a different room than I was.

The number of people in different roles, with different jobs, who've claimed I was abusive for having a migraine, for having access needs at all, has been so high I cannot remember it. I've been thrown off trains, removed from buildings. I am not allowed places, not for any way I act, but because my brain reacts to the environment around me, because others threaten me when they find this out, and because this is my fault.

I must be lying about this. My disability must be made up. From medical assistants to doctors. Professionals of all sort make this clear.

My experiences are fear, knowing I'm not allowed, knowing I'm not real to others. I don't want to go into them, they're just more experiences that all disabled people know.

Because what is notable to me is instead who does care. Who does notice. Who sees me as a person.

Because without stopping, or asking, or saying I need help, there are people who automatically know and see that someone isn't okay right now, and react and respond without questioning doing so. And for me, every one of those people has been an autistic child. Every one of those has been someone who written into an IEP was things about how not empathic they are, how they don't understand social interactions, how they need to be trained. Every one of them was someone who was being abused through ABA by people who claimed they did not know the "correct" social interactions at any point in time. And yet, when they saw someone who they cared about, they immediately responded. And their teachers might not have understood. Because at times, their teachers listened to them, and at others times their teachers went on about how socially inappropriate they were being, but every time, these reactions were the meaningful ones, the helpful ones, the ones that showed me that I mattered to someone in the world, and also the ones that did anything to make it easier to get through that moment in time.

A child taking off their earmuffs he was wearing because noises were too loud, and bringing them to me, and trying to give them to me because they thought that noises would be more of a problem to me than to him. The fact that they wouldn't fit me didn't change how meaningful a moment like this was (and such an action reminded me of the sound protection I was carrying and could not remember about without a reminder. Yet another child helped me go through my backpack and find some sort of hearing protection item to make noises less overwhelming).

A child stopping doing what they was "supposed" to be doing, going through their teachers stuff, and hiding everything that might be a migraine trigger of mine so nobody could interact with it. The teacher got really annoyed with them because of them going through their stuff rather than doing their school work, but it was because the cleaning supplies and such that were easily accessible were repeatedly triggering migraines. They did not find this acceptable, and wanted me in the classroom, so fixed the problem, removing the migraine triggers, so nobody would interact with them.

A class, shutting the lights off, closing the shades, to make it a dimmed classroom, before I entered the room, when they found out I was going to try to teach despite my migraine having spiked high. In an excitable, rambunctious class, every time anyone spoke above a whisper another student reminding them that noise was bothering me and being quiet would make it easier for me.

From students finding ways to help me around a school building when I couldn't walk, to students helping me find places I'd never been before when I couldn't see, it's been the autistic children who help, and they have done it without prompting, and without forcing help upon me.

While to others, I have always been a burden, a thing to remove, it's only been to those who I must hear about how much they, how much I, cannot understand concepts like caring about others and showing empathy, who care about me.

Sunday, February 17, 2019

The spoon cost of walking

The theme of my thoughts as I try to write up something for rare disease day this year is simply just how many spoons it takes. Just how exhausting it is to have to constantly be walking the line of needing to explain but not wanting to explain. Just how overwhelming it is to navigate medical systems when even doctors don't recognize that what happens to you body can happen. The exhaustion of fighting for accommodations, and the disbelief from people that you cannot possibly need the accommodations you need, and the overall being told over and over and over that you cannot exist.

Really that, in many ways, not existing to people, and that meaning being told things over and over and over that aren't true and can't be true, and being told that your existence isn't valid and can't be real. And just, being tired. Just being out of spoons. Just, everything being so much, because it's so always. Everything is built for abled people. How much fight do you have? Because every last moment of existing while disabled can be a fight. And when your disability is something that people don't believe exists on top of that, it has it's own details of how that happens - not better, not worse, just different, and it's own sort of tired.

So I keep trying to explain, and I keep failing to explain, any of the parts of what it's like that it feels like are overlooked. People seeing some parts and missing others. And I wrote this, and shared this, and it describes some parts of how I interact with my body that I have realized that not everyone does. And at the same time, it describes absolutely nothing. It feels useful to describe, this is how my body works! Think about how much it takes, how much effort it takes, think about the spoon cost if you were to do things this way. And at the same time, it misses everything, because this is such a tiny portion. This is that are background noise to me. This is spoon cost, not things that are anxiety, not things that are daily planning, not things that are choosing what I can do, where I can go, how to do things, not the overwhelming layers upon layers of planning that go into everything. This isn't everything that isn't movement and there are so many other thing. This is such a tiny fraction that it feels like nothing.

And at the same time, it feels like it's so much, yet another place of the overwhelming exhaustion of never having spoons because abled people just take things for granted and like, how do you do that, I don't understand. So, while things are nothing, and so much at the same time, I can try to explain, any parts of what it is like to live with my disabilities. Things people take for granted that I can't. Because, really, I'm just so tired, and I have so many reasons to be tired, and people don't see any of them. So I'll try to explain, anything that is explainable in the words I have right now.

Something I've had trouble explaining to people lately is just how much Effort it takes to have body do things. How much cognitive thinking about and concentration and knowing that if you mess up any one step then it all falls apart, and that's not just your body but your thoughts, because you have to make the decision to do each part of those actions.

Apparently this isn't how people usually walk? Apparently people don't usually walk by actively deciding to pick up foot, move foot forward, remember to balance, remember to keep foot pointed forward, think about keeping ankle oriented correctly, think about how you place foot down, all of the steps of walking, split up, and thought about for each step.

And it spending all the spoons for it to take that much thought. Because you need to keep track of all those things simultaneously. You need to do all those things simultaneously. You need to concentrate, and you need to force your body through not knowing how to do things.

Apparently people don't have this, and this doesn't make sense to me, because this is how using a body works. This is how speech works, from sorting out what to say to forcing words out of mouth. This is how controlling limbs works. This is how trying to keep track of where body parts are, and what they're doing is. This is just, what my body does.

Except, I can't even just say that this is what my body does. Because that is an oversimplification. Because I know it's unusual to have migraines that come with things like sudden weakness. Where on top of this, I'm needing to through force of will manage to Move and Do Things in order to manage to get through basic daily necessities or staying safe. Where I don't know how to keep my body upright because of not having enough strength in my leg, I need to drag it behind me, but trying to force myself to do it anyways, because it's the only way to get away from places that will make the migraines worse and worse, and in doing so, have my body fall through levels of things it can and cannot do in ways that do not make sense even to me. Because people see what I "can" do, what I can push myself through, at least sometimes, when it feels like I have to. And they don't see the cost. They don't see the days after, when my body doesn't respond, no matter how much I tell it to, because it is it safe enough without. They don't see the physical pain that has been caused. They don't see how exhausted, overwhelming exhausted, everything makes me.

And what isn't seen is the failures. The times when my body says, what, you want to climb a stair, I don't understand how you lift a foot, and put it on a stair above, that concept makes no sense to me. The times where I go to put a foot down in front of me and I just put it down with my ankle sideways. The times where I try to step without lifting my foot. The times where my leg gives out because no matter how hard I try, the strength just isn't there and force of will isn't enough.

Those aren't remembered, by people who don't deal with them regularly, aren't fighting against them always. I'm just "clumsy". Not actively fighting my body to force my body to move. Not feeling like fighting through quicksand would be easier than just trying to get to where I need to be, because every step I feel like I'm going to fall on my face if I don't do it perfectly right.

The failures aren't remembered by people who aren't terrified of them, because of not knowing how bad they are at times. Random falls, because of strength leaving, not being able to control limbs, all control gone, no matter where I am. Terrified this will happen in the road again. Not having ways to prevent it, because that's just how my body works, it takes effort to do things, it can't always do them. I can't predict when it can and can't. Triggers aren't predictable. Triggers are everywhere. Always. Nothing is safe.

What is seen is someone who spins and jumps and uses body in ways to make brain feel better. And what is missed is how much work it is to do.

So I'm told how much I don't need help. How much I can't need help. How much I should be fine.

I don't need a placard. I don't need crutches. I don't need to use straws to drink out of cups that my body can't predict how they move, and in times when my strength and coordination are even more unpredictable than their baseline. I don't need people with me to help me. I don't need things. Because I could usually make due enough to survive, if survival was all that I was trying for. If I was not going to do anything else. If I did not try to do things like leaving my room, that's an option. Not an acceptable option, but an option.

Because trying to do anything, and I just can't keep up with myself. I can pretend hard enough at times, but I just fall further and further behind, burning myself out further and further the more I pretend.

Apparently people don't have to try so hard to do everything. Don't have to think about every word coming out of their mouth, don't have to plan every motion. Don't need to concentrate, focus, force everything to happen.

But this is how I have to do things. This is how I interact with the world.

And it's fine. I am happy this way. But it should be recognized, that this does take spoons, and I simply get tired.

Monday, February 4, 2019

my words are my own

Dear teacher,

You know who you are. You. All of you.

Your words aren't my words.

You can't say that I believe what you want me to believe. You can't say that I think what you want me to think. You can say that I am who you want me to be.

You know who you are. You, who thinks that you can manipulate your students through me. Who tries to make it so that the only adult they trust is said to say the things that you know exist only to control them.

You can't control my words. My words are my own.

I've heard you say "Don't you agree" to me so fast that I don't have any time to process what you've said. But no, I don't agree. And your students will hear that. Your students will be told just how much you are trying to manipulate my words.

I've heard you make claims about what I think, without asking me, knowing I will not agree. And no, this doesn't stand.

My words are my own.

My disability doesn't mean you can control me. I am not a tool for abuse.

No.

You know who you are.

And I know what you're doing.

My. Words. Are. My. Own.