tag:blogger.com,1999:blog-73305145650407085822024-03-12T19:39:23.753-04:00Turtle Is A Verb<b> Turtle, <i>verb:</i></b> To withdraw and and shrink, like a turtle hiding in its shell.
<a rel="me" href="https://mathstodon.xyz/@tuttleturtle"></a>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.comBlogger157125tag:blogger.com,1999:blog-7330514565040708582.post-27342403184634066142023-11-12T21:42:00.002-05:002023-11-12T21:46:07.120-05:00I'm echolalic. I'm not a gestalt language processor. <p>I am echolalic. I am not a gestalt language processor.</p>
<p>The ways I communicate, are, not tied to the descriptions of professionals. They're too wobbly. They move. They aren't stages where I move from one to another. If I'm scripting more today than yesterday that's not better or worse. If I don't have words at all that's not failure. </p>
<p>I'm echolalic and the way I commnicate is so specifically necessarily echolalia and not any other word. As I once again echo the the words of autistic advocates who came before me. The echolalia of describing my echolalia with the words echolalia used by others because this is <i>ours</i> and that matters. </p>
<p>It matters that I am able to say things the way I do. Because the way I built communication out of mixing sentence structure from here and phrases from there and smoosh my words in there and out come a thing. The way I did this online away from the professionals and with others like me. </p>
<p>I am that echolalic person who was thought when I was a teenager, that I came from England, becase the places I learned language from were British Fantasy books. </p>
<p>And I'm that echolalic person who still will squish a word from here and a sentence structure from there, to the point where people won't even notice. </p>
<p>If you don't understand the meaning that does not mean it is not there. If you misundestand me that does not mean I am not saying the things I am saying. My communication is not about needing to learn to "break down" things even as I have smooshed things together. </p>
<p>Even as I did that I'll echo entire phrases as I choose. It's my choice. I just find this the current least energy cost manner to get across the ideas I want. (Or truthfully, repeating my own from a decade or two ago, when they first were formed in this manner and have been used since.)</p>
<p>Tunes and songs don't talk about me. I wasn't a kid who was all about learning things by intonation. But give me a book and I would learn the phrases from those characters more than the people around me. </p>
<p>I'm echolalic. I'm echolalic because I do this echoing. I'm echolalic because it makes communication so much more efficient. I'm echolalic becase when I'm out of energy I can get things across. I'm echolalic because when I know what I want to say and not how to say it I can probably get something close enough you can follow. </p>
<p>Collecting up scripts and scripts and scripts to the point of not even remembering them until they come out is effective for being able to grab something at a moment's notice. </p>
<p>But I'm not a gestalt language processor. I'm not one because you always leave out people like me. You forget we can exist. I'm not one because I don't want you to claim me when my commnication is not defined by somoene like you. I'm not one because my communication is so far more powerful than a definition. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-4677681840092192502023-06-27T00:44:00.000-04:002023-06-27T00:44:33.851-04:00ethylene gas <p><i>Content Warnings: compliance training, working in systems which knowingly oppress, refrences to ABA and suicide ideations in children</i></p>
<p>I keep seeing professionals talk about how they are a good [professional] in a broken system! The people who are willing to admit that maybe there is smething wrong with how others do their job, keep talking as if they can be the exception. And always, they are talking as if they can be the savior.</p>
<p>These people aren't admitting or recognizing their compliance in the system. These people aren't truly even recognizing the broken system.</p>
<p>So, people. I'll tell you something you don't want to hear, but need to. If you actually want to help disabled people you need to actually recognize: what you were taught is abusive.</p>
<p>Those classes you took to get the degree and license, they taught you to do things that are abusive. That professional development you take, it teaches you more ways to abuse us.</p>
<p>The entire larger system of how we are "helped" from education to support staff, from medical fields to early intervention is built upon the idea of us being less human and others being saviors who come in and save us, frequently by fixing us, without asking us what we want or need.</p>
<p>If you are working, in special education, as a therapist, somewhere with disabled people, you are complicit by working in this system.</p>
<p>And sometimes its the best option, yes. But you are still, complicit, and you were still trained in abusive methods, and you still need to know the ways your field is built to break us in the name of "fixing" us.</p>
<p>I am not saying that currently, while we don't have any other options, nobody who wants to do good should work in this system. I am saying, you need to recognize the system, and you can't just go and say you're an exception, because as much as you want to be, and as much good as you do, you're still working in the system. And - this both will cost you, if you are truly going to actually care - and it can be so very worth it, because while it is only mitigation, mitigation is also a very huge deal.</p>
<p> When I am there in the room while someone <a href=https://turtleisaverb.blogspot.com/2016/04/they-dont-need-to-touch-you.html>once again has their body taken from them</a> I am complicit. I have to be in a broken system, I cannot be in that room and not be complicit, as much as I successfully reduced the frequency that these students would have control of their bodies snatched out from under them. It was worth it to me, being able to throw myself in the way, knowing ways to distract, knowing ways to redirect the actions of the BCBA onto myself, and I never, never, never, could prevent it all. I was complicit, by being in that room and not pushing the therapist out of the way. I was complicit, by not screaming and making a scene. I was complicit, because I knew what was happening, and I let it, and helped the student afterwards once there was a moment, where I could let them process and breathe and have an adult who would let them make a mistake. Because every last analysis said it was better to do what I could, and I couldn't do that if I was gone. </p>
<p>But that didn't make me not complicit. </p>
<p>It is pain to know that sometimes. I can cry from the nightmares of what happened to me in that school, and I will absolutely always, be aware that there were times that I made mistakes and if I moved a different way, if I said a different thing, maybe they'd have been hurt less, because I didn't stop it, I only mitigated, and reduced, so that I could keep preventing the majority I could prevent, and keep being there for the students who needed an autistic adult in their life. I hurt people, even though I didn't want to. And the fact that I didn't want to, and that it was a mistake, and that it was hurting them by doing the wrong thing to try to mitigate harm, does not change that. I was still complicit. I still did harm, as every one of us did, and will do. </p>
<p>You cannot work in the system and not harm. You cannot work in the system and care and not make mistakes that will hurt someone you care about. We all are part of the system, it does not matter how much we choose to be there in order to protect.</p>
<p>And it is so easy for that compilance to turn into being about you, what is protecting you. It's what's keeping you employed. You need a job, you need to be here. It's so easy for compliance to become a habit. You need to do these things they're the right thing to do, they're what you always are doing. With regular professional development teaching more and more abusive techniques and coworkers treating them as normal the pressure does not stop as soon as you get a job. Even if you meant to support and started there supporting, now you're continuinually being trained into the necessity of fixing. It's so easy to lose yourself into the system that you were trying to bend to protection, as it breaks you and tears you down, depending the way the cracks form.</p>
<p>I will never regret working in the school system. It broke me in ways that nothing else did, and I will still never regret it. Because I absolutely think it was worth it even knowing the day to day triggers I struggle with, the PTSD that I do not know how to explain. It can be worth it to do things are the best we can in the moment, fighting in the imperfections of the world, while others are working on improving it. It can change people's lives and it can save people's lives.</p>
<p> But it's not being a savior. No number of people who's lives you can say you've changed make you a savior. You still are in the system, and that system is still broken. The system still requires compliance with it to be there, and that compliance still is compliance about humanity and personhood and our compliance for into indistuishability leading to maybe almost human but not really. </p>
<p> None of us are saviors, even when we're both the one who was forced through the therapies and the one who's the adult with power. We're still the adult with power who is choosing to comply for the hope to do what we can. We might choose to fight through mitigation and saving one single person's life, and that life is worth so very much. We all deserve someone who tells us we can live. </p>
<p> But the cost is still there. You have to recognize the cost or how can you save that life. Because if you don't that cost is weight that is there still whether or not you believe it acknoweldge it it still <i>does</i> things it still <i>hurts</i> it still causes pain. </p>
<p>I have the names of students who told me they didn't think they'd be alive if it weren't for me in my head. They're names I always remember. They're things I have to hold on to because of that pain that I went through. Those lives are worth every moment of being there. And it cost. It cost me and it cost them. Because I was working in a system that demands compliance to exist and as much as I had abnormally strong power to bend that, it was bending, not breaking.</p>
<p> I was able to make most of that pain go onto myself and what that did to me is long term trauma. The cost is immense. That cost exists. I was not able to mke it all go onto me. I know the names of the students who hurt because of things I didn't do. Some of those same students were people who I don't think I could have done life changing things for them without waiting there, and that hurts too. It still is a cost that both them and I will have to live with. </p>
<p> It's power and hurt and pain and trauma and the best option that existed in the moment and trauma of those students still exists. The system is a system that we live in and we work in and we aren't more powerful than that system, we can't break out and be that "good one". We are not that all powerful one who is able to somehow <i>fix</i> everyone and everything despite the system. We <i>do not need to be fixed.</i> It's power and hurt and pain and trauma and trying to survive the best we can. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-51865811215960198882023-06-24T22:01:00.002-04:002023-06-24T22:01:49.515-04:00Words? This is words, but not everything is<p>Whether I'm seeing old friends or meeting new people for the first time, when I do this with my AAC the question of time is always there. </p>
<p>Talking moves fast. People are so quick to just say things and move on. They don't realize the time it takes to type this sentence. They don't realize the time it takes to realize what I might be wanting to type.</p>
<p>Time is relevant time is important time is everything and always something that will be part of whether or not I'm able to be involved and included. </p>
<p>But time and choice and communication is complex.</p>
<p>People will ask me how to keep up with a conversation with AAC because of how much slower it is. Most frequently, my answer is, am I even gonna type anything?</p>
<p>Because is that the right way to communicate. It's great and important, and its slow and takes effort. </p>
<p>What about the handflaps and the excitement. What about the pointing. What about the making noises that aren't words but don't have to be. What about any of things. </p>
<p>Because yeah, I type. And I type fast. And I will write up responses for a conversation ahead of time that wil mean that people will end up complimenting me because why did nobody else think of that it made it so much easier for us to move along with someone writing up their ideas ahead of time. </p>
<p>(Sometimes we have the advantage of actually thinking to take the time when we need it. Sometimes we have the advantage of knowing to stop and think when we can, because we have to, when others aren't used to it. Sometimes we have the advantage of knowing how to prepare because we've done it before and we're the ones sharing that this can be done and will make this easier to people who we've not realized hadn't recognized this. It is complicated. It is always complicated.)</p>
<p>I type. And I don't need to always type. I don't need to type when something else is faster. I don't need to type when I have another option. I don't need to type when something else is more natural. I don't need to type if I don't want to. I don't need to always do the same thing. </p>
<p>Sometimes people will start learning to use an AAC method and focus on it, get stuck on it, rather than the more general communication. How do you have people listen, and communicate, and pay attenion, and include you? The focus doesn't need to be one app, one device, one method. There is the question, the idea - how works for you and them and your relationship and getting ideas across and being understood to each other. What's comfortable here, now, with these people, in this situation, in this moment. It's not about an AAC app, its about your communication. </p>
<p>So sometimes, its just what is your natural instinctual reply? When will you be handflapping or bouncing or pointing or running over and picking something up? When will you be trying to get something across without words. When will words be what you want to use? When is what you want and think and do, automatically, the thing that makes sense? Does it? Is it actually what is working for you? Because you don't need to just throw out all the other communication methods that work with these people in this time in this place.</p>
<p>Not everything is words, not everything needs to be words, not everything should be words. Our words are powerful, and our words are ones we use when we want to, and our words are ones we use how we want to. But our words aren't the only communication method that exists. </p>
<p>And truthfully, when it comes to how people listen. They listen better to me, when its not only using my high tech AAC, as much as I will have it with me literally always, and as much as it is part of me. Me bouncing and squeaking and pointing and handflapping and then being oh let me type this out so you can understand my thoughts, is the me that is there and their friend, not a person who is behind a screen without emotions. The me who when you give an answer signs SAME very strongly will get a stronger reply than the me who tries to type any typed words explaining why I agree, because there is no way to explain the importance of agreement it that can explain the intensity of importance. The me who uses words when I need them gets listened to more, when I don't always use them, because I'm faster in other ways, but more so because I'm naturally me and all of the me and a variety of the communication methods are there. I just let myself be, and be fast, when fast is appropriate, and slow when slow is what makes sense. </p>
<p>My words are the words I use when I choose, and how I choose. I don't have to use them always. I can use them when I want and how I want. </p>
<p>Everyone else is fast, and I can't keep up, I never can keep up. No matter how much they try to pause and give me time, its helpful, its relevant, it makes me feel valued, and I'll still recognize the ways I'm feeling slow. </p>
<p>But what speed I'm moving at when I'm responding and how I'm responding can vary and I can be there as I can when I can how I can. I can sometimes be silent and sometimes only be able to reply to a few people and sometimes react quickly in way that aren't words. It can vary. I don't have to make myself try to always do the same thing. I can vary my speed as my speed varies, I can vary my communication as my communication varies, I can do what makes sense in the moment, I can just be me and let myself choose to put the effort where I want in the ways I want. And I can choose to be around people who listen to someone who can sometimes speak with their voice for hours nonstop about the importance of respecting children or proving correctness of programs and at other times can't formulate even their own name typing on their preferred keyboad. I can choose to be around people who let me have the time when processing words is so hard it can take an extended time to formulate even a single word reply with all the supports I have And if I choose that isn't worth the effort, and the best I can do is use signals that I am overwhelmed and cannot, will do what they can to support me as I want.</p>
<p>Because yeah I can use my AAC when I want and how I want, and its still not for anyone but me. It does not matter how much of the time I cannot speak coherently, I don't have to do that for any one at all, except as I want and as I need - it is not about them and it is not their choice and if I wanted to just turn and walk away and have that be the statement of nope not now, then great, that's allowed too. Because its not about allowed its not this is allowed and this isn't. </p>
<p>It's I can do what is right for me, whatever that is, because I am a person. <br/>
And I can have relationships with people who treat me as a person. <br/>
And its not about one method of communcation, its about communicating, as a person, with other people. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-54875180433053420422023-04-09T12:27:00.002-04:002023-04-09T12:39:28.747-04:00I'm nonbinary like my gender both is my disabilities and it isn'tI'm nonbinary. My gender is nowhere in the galaxy of male or female. It is still my gender. <div><br /></div><div>I'm gendervague and neuroqueer, my gender cannot be entirely explained because of my neurodivergences but the part that can be explained is the act of queering my neurodivergences. My gender is a noun and a verb at the same time and there is nothing contradictory about that because we are all contradictory and being forced into a society which hates us. <br /><br />My gender is what it is, and it is never going to make sense to me, not to mention other people.</div><div><br /></div><div>My AAC is part of my gender presentation. My AAC is also part of my gender - as I take this communication which actually works for me and claim it. As I am forceful this is me and how I am and you need to listen. That is part of my <i>gender </i>not only my gender presentation. </div><div><br /></div><div>My AAC is part of my gender presentation but my communication and not denying it, making it my own, being me and communicating as myself, and <i>being</i> in ways that are shifting norms about no this is how I do in fact communicate it is my choice, that is absolutely more deeply gender in a way I don't have words for.</div><div><br /></div><div>The first time I felt gender euphoria and could identify it as such it was from getting ankle braces that actually helped. My disabled gender was euphoric about finally being closer to the me I knew I was but nobody would believe. </div><div><br /></div><div>Sometimes things are complicated. It's not just disability or gender. It's not just assistive tech or working on getting a gender presentation where you might dissociate slightly less. Or really gender is always complicated and sometimes that's in this manner. </div><div><br /></div><div>Voice is part of my gender presentation of my AAC. But so is visibly using AAC at all. Choices about cases is part of my gender presentation. So is the choice of low tech or high tech. </div><div><br /></div><div>I am nonbinary. </div><div>I am nonbinary like sometimes I choose high tech and sometimes I choose low tech and often I use high tech and no tech in the same conversation. Sometimes I use iOS and sometimes I use android and having both set up is more beneficial and it is more <i>me. </i></div><div><i><br /></i></div><div>I'm nonbinary like typing or symbols doesn't make sense. I do both and. Or neither. Or one or the other. I most often am using typing with symbol prediction and that most likely is thrown out so frequently you can't depend on that assumption being true. It's never this kind of communication or that. That's pinning us into boxes yet again where we should not be pinned. </div><div><br /></div><div>We're cats after all and boxes are for jumping into when you want to but when someone else holds you there it's never gonna be friendly. </div><div><br /></div><div>And yes this is <i>gender</i> it's not only gender but having and using assistive tech that I need without shame is intertwined with gender and gender presentation. And when you're claiming that symbol based AAC is only for kids and I'm handflapping sharing moments where I can show a child that I communicate like they do they <i>can</i> be an adult with such communication that's all of me. </div><div><i><br /></i></div><div>I am nonbinary like I when writing this I used multiple different AAC apps alongside other tools for writing. I don't have to assume my choices are limited to writing tools and tools for speaking aloud. I don't have to stick with one when it's no longer the best. </div><div><br /></div><div>We can do what is best in the moment even though it might be different 5 minutes from now. We can use both or neither or make up something you never would have considered we can do what fits. </div><div><br /></div><div>I am nonbinary like all of me is nonbinary. And that includes how I don't have to fit into other boxes either. </div><div><br /></div><div>My assistive tech gives me gender euphoria, and my assistive tech let's me interact in manners which fit me, and my assistive tech is part of me. And when it's part of me it has to be intertwined with my gender, part of it and separate - both can be true and both have to be, because I have a gender and my body is part of that and separate, both true. </div><div><br /></div><div>I can be the person who is nonbinary like sometimes I walk without aid and sometimes I use a wheelchair, sometimes I use crutches and sometimes braces are enough. And importantly sometimes I am surprised and now unexpectedly need more human assistance because I can't do it on my own. </div><div><br /></div><div>I can be someone who needs help and that doesn't make me not trans. </div><div>I am someone who is who I am with varying needs and varying disability presentation and this isn't my gender presentation but absolutely helps define it. </div><div>And how I react beyond survival is absolutely interconnected with self and gender. </div><div><br /></div><div>My AAC is part of my gender presentation. My AAC is part of my gender identity. </div><div><br /></div><div>The first time I wrote the latter it was a mistake. Something I didn't notice for quite a while and by that point I thought it felt like it fit. It fits because it's true. </div><div><br /></div><div>In many ways my gender is a presentation and that presentation is telling you that you can be you and you deserve the tools necessary to be yourself. </div><div>In other ways it's so far from that I don't have the words and I need to tell myself the same thing. It's okay to be me.</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-30221521337570426202023-03-27T11:28:00.000-04:002023-03-27T11:28:02.627-04:00no primary diagnosis<p>Open another survey for another study. In the demographics it once again asks "what is your primary disability". </p>
<p>And once again, I don't have an answer. I can't click one of those check boxes as "primary". I can't type in one word, one diagnosis and say this is the most relevant diagnosis to my life. I've seen it argued that this is for simplicity, for ease of data collection and data analysis. But it doesn't reflect our realities, and this is not just these studies. </p>
<p>I know I'm far from the only person who can't explain myself in terms of a primary disability and secondary disabilities. My bodymind doesn't work like that. I have multiple disabilities. They interconnect they intertwine they interreact and interrelate with each other. It's not only that all of them are important and affecting me. It's that I can't find boundaries. They affect each other. Things can be applied to multiple different labels. Why is my bodymind doing this way this day? Because it is, it doesn't matter a label, it matters how I support myself. </p>
<p>But again, as I apply for the supports I need I am asked my primary disability. And again. I don't have an answer. I guess I choose what they are most likely to understand matches those supports. But again because that doesn't <i>describe</i> me I I am denied supports</p>
<p>It's taken years to get where I am, between people not wanting to actually diagnose me, people not bothering to look at someone who looks like me, and being told I don't qualify for supports I do qualify for because someone with That Disability (which yes is a disability I have) doesn't qualify (but actually I do have needs with That Disability that could qualify me. It's not that simple). I've been both told I have to be only one disability and that if I am multiple in this manner it doesn't make sense.</p>
<p>This has happened repeatedly. This keeps happening repeatedly. This pattern of but you don't look like that. But you can't be that. But you don't need supports because of that. Because you need to be stereotypes of single diagnoses or you don't get any support.</p>
<p>I'm asked my primary diagnosis, and I refuse to answer. I list multiple diagnoses and say this is the list that is the minimal list you need to know to understand me. The nurse says to the occupational therapist, these all interconnect I don't even know what to write down as primary but we're required to write one down. It's the best care I've gotten of the sort. And they're still required to list a primary diagnosis that doesn't fit me.</p>
<p>How many people have had diagnoses denied because of the refusal to recognize that maybe when you have multiple disabilities your presentation might look different. How many times have I had doctors tell me they don't know how to deal with me. It's not just the surveys. It's always the you need to only be one thing when that's just not, accurate. </p>
tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-17970177819723679862023-03-14T23:32:00.000-04:002023-03-14T23:32:03.982-04:00You are a good reason to use your AAC<p>AAC isn't about need.</p>
<p>How we communicate isn't about how needs and wants and only this exactly that.</p>
<p>It's about people and its about <i>you</i></p>
<p>You're a person here. You don't have to communicate how others tell you to. You don't have to communicate in some way that society says is the only way. You don't have to somehow "earn" the use of AAC.</p>
<p>AAC isn't about need. It's not about only one option is best only one option is acceptable only one option only one way.</p>
<p>Because you get to choose your own life. You are in control of your own self. </p>
<p>If <i>you</i> choose it, for any reason. If you want it, if it helps you feel better but you don't feel you "need" it, if you do feel you need it, if you just want to practice and you're feeling like you're practicing, if its fun, if its because why not, any reason you choose, you should use AAC. Because it is <i>your choice</i> how you communicate. </p>
<p>And you get to choose when you speak and you get to choose when you use AAC. And you get to choose whatever combination of this and that and something else entirely: its not wrong, it won't be and can't be if it is you choosing and not you being coerced by others. It might not be the ideal set that makes life easiest for you, but its still <i>your</i> choice and if you're choosing something that makes some things easier or some things harder or some things take more time or some things more stressful in exchange for speed, then that's fine because you get to make that decision for yourself. </p>
<p>You don't need a reason to justify it. You just need to want to use it for whatever reason why ever why ever why ever. It all is a good reason. </p>
<p>You are a good reason.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-68921906224015710522023-02-13T15:42:00.001-05:002023-02-13T15:49:59.475-05:00My hands let me walk<p>As a community, us autistic people talk a lot about how stimming is productive. It doesn't <i>matter</i> that it is, if it was just fun, if it was just something we did because it felt good, that would be important and good and something that we should do and nobody should stop us from doing. But it <i>also</i> does other things. Stimming is ways we explore and understand the world. Stimming is ways we interact with things that are too much or too little or not what we expect or exactly what we expect, in order to make sense of it. Stimming is ways we process, ways we communicate, ways we express emotion, ways we make it so that everything is not too much. Stimming is productive. Stimming is necessary. Stimming is good. Everybody stims.</p>
<p>I do a lot of hand stimming. My hands are always moving. They run along walls, bounce off of other textures, have my fingers in motion, stereotypically flap, or do whatever that I need in the moment. It is ways that my body can understand what is going on aroud me. I don't process information well in vision, give me touch and the world makes more sense. I have really poor propioception in generally, but my fingers have learned how to move and understand where they are, because that is how I communicate. My hands move. It makes things make sense, it makes me able to make sense of it.</p>
<p>I have EDS. My hands are hypermobile, I might make sense of the world with my hands, but I can never make sense of my hands with themselves. When once again, they bounce off the wall to realize there's a wall there it comes with my joint sliding out of place. I need to move my hands. And, I once again hyperextend or sublux something or other, because my hands just do that too.</p>
<p>When my hands get too irritated and inflammed, it is hard to move them at all. The inflammation physically prevents movement. My body keeps being told this is not supposed to be like this, something is wrong, something is wrong, something is wrong, constantly. I need to move, it is the only way to get rid of the wrongness. I can't move, because my hands won't move.</p>
<p>Movement, whether hands or otherwise, repetitive movement, nice, organizing patterns which can put my brain in order, can help with the overwhelming wrongness of being unable to use my hands. But the same time my hands are flaring I find myself struggling to do what is otherwise simple combinations of motions. Step in pattern. Stand on one foot. Can't do can't do can't do. Even standing up from sitting am more likely to need someone to help pull me up because coordinating my body to do the steps to stand doesn't work.</p>
<p>How do I put my self in order when I can't move? Why can I not move I don't have any injuries to my ankles or hips this time. My body should work shouldn't it?</p>
<p>Go to stand, hand flutters by my side. Thinking how to do the motion, get it right. Stand up.</p>
<p>Eventually notice that every time I try to move, I am trying to move my hands. My hands move to understand the world. My hands move to understand my space in it.</p>
<p>We talk about stimming as productive. We talk about how it is used to process and understand. </p>
<p>For me, I move my hands, to understand how to move. I get confused, my sensory system can't coordinate with each other, I nearly fall, until my hands take their part in the motion of a step.</p>
<p>My hands are how I make sense of the world. That can be always true. I don't have to skip parts of it. And I can have that be part of my physical therapy. If my hands are flaring today, we need to do single muscle exercises, because I can't do anything that combines multiple muscles. My hands moving alongside is how I know how to do that. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-38845591006110505762022-11-20T18:33:00.002-05:002022-11-20T18:33:51.887-05:00There's no one best app<p>I see people frequently asking what the best AAC app is, and this is a hard question, because explaiing that there isn't one best app, its a question of the best app for a given person is not a single sentence reply. </p>
<p>It's easy to give a suggestion that is the app that works best for you or whoever your support. It's easy to give the suggestion of whatever you know the best. </p>
<p>And that app, is the best app for <i>you</i>! And not the best app for everyone. Because <i>there's not one best app. </i></p>
<p>What works best for different people, is different, because we're different people, because we have different needs and different experiences and different lives. What works best is different, because we aren't all the same person. And that's a good thing. </p>
<p>For example, Proloquo2go is an app that is very popular for good reason. I have many friends who use this app. I can easily turn to people for whom this is the best app. And I trialed it, and it was complete nonsense to me. It didn't matter how much I tried, I could not make sense of it. </p>
<p>Others talk about how they really like it because of how intuitive it is. It was so confusing to me that after months I still hadn't figured out basics. People talk about this symbol set (symbolstix) being one that works well for many people. I cannot tell the difference between different symbols as a general rule - they are just, visual nonsense that only make the text more complicated, nothing that helps sort out what is what, or help me keep track of what is where. I never was able to figure out the editing, or many of the setting options. I got lost in the words to the point where I was able to confirm that I'd never be able to, no matter how much practice I had, use the vast majority of the built in vocabulary, with the layout they choose not to mention any I would add. </p>
<p>And this app is absolutely the best app for multiple of my friends. </p>
<p>The fact that <i>I</i> cannot use this, that it is not something that works for me, does not make it something that does not work well for many people. It does not mean it is not the first one I would recommend to people in some cases. Because we're all our own people with our own needs.</p>
<p>But it does mean, this is not the best for everyone.</p>
<p>None of them are. When some of us need symbolstix and others need PCS, when some of us need words in multiple places and others needs words in one place, we have different needs.</p>
<p>But also, what is considered easy to edit, is different person to person.</p>
<p>What is considered an intuitive settings menu, is different person to person.</p>
<p>How you swap between typing and symbols, how you use search, how you save what you're saying to say something else, how you speak aloud something while you're in the middle of typing, these all vary app to app and your preferences and needs and what is easy and intuitive varies. </p>
<p>And sure, a lot of this you can learn, you don't need to go out of your way to be perfect, and be afraid you're going to get something wrong because you haven't gotten to try everything. It's worth getting AAC even if you're not positive this is the optimal app it's worth getting <i>a method of communication</i> that is more likely a better one. But, how we talk and suggest things and help people find their way also is relevant. </p>
<p>(also, if you try something, and its not the best, and you find another app that looks better, then no matter how much there is talk of how hard it is to swap apps, that doesn't mean its not sometimes <i>worth</i> it when new apps are created or something else becomes financially available. Change is hard and also, communication methods becoming added to a system of options is not a bad thing if you can afford it)</p>
<p>But, there is no one feature that you can add, one change you can make, one option, that makes an app the best app for all of us (whether you're designing a new app or otherwise). Because we just, don't all need the same things. Because what is going to be the best for you, is still going to be confusing to someone else.</p>
<p>Choice is good. Different people using different apps is good. The same person using different apps at different times, because different apps are the best in different moments is good!</p>
<p>Because setting up for our own needs, rather than the expectation of meeting what others expect we should be, is good. Because actually doing what we need for ourselves, and having what works for us is good.</p>
<p>And because we're all our own people and actually recognizing this when we discuss technology and assistive tech is good. Actually <i>recognizing</i> and talking about our humanity and personhood is something we need to do more of. </p>
<p>But we also need to do more of recognizing that maybe we actually have individual preferences rather than you say you need AAC so lets recommend the one app that is the one that I personally know most about because it's obviously going to be the best when there is literally no reason to assume that it would be.</p>
<p>When I say I'm an AAC user that doesn't mean I'm the same as any other AAC user.</p>
<p>It means I'm me. And I'm an AAC user. And I don't know literally any other person who has the needs I have or the set up I have or the specific apps that works and don't work for the reasons that they do, that I do.</p>
<p>We don't all communicate the same way, we don't all use the same assistive tech to communicate either. Lets have there be more options. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-2661633564419930292022-11-17T14:45:00.000-05:002022-11-17T14:45:06.527-05:00and math was our common language (or thoughts on working in a school)<p>You ask what my job was and that's simple enough. <br />
I was a math tutor. </p>
<p>But if you ask what I did, <br />
that's another matter entirely</p>
<p>I cared for so many students the schools chewed up<br />
And spat out<br />
And tried to funnel into institutions <br />
<span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>or prison<br />
<span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>or subminimum wage<br />
<span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>or death on the street<br />
And math was the common language we had</p>
<p>is that more simple or more complicated or both to say?</p>
<p>i'd say both</p>
<p>the complexity of saying your job is being human <br />
that's not really a job?<br />
is it?</p>
<p>i cared for so many students who needed someone<br />
someone<br />
anyone<br />
while they were being torn to shreds<br />
by a system that knew what it was doing<br />
and just.<br />
didn't.<br />
care.</p>
<p>because maybe if one adult was there and giving a hand, that might be enough to grab onto</p>
<p>and math was our common language</p>
<p>sure what i did <br />
you can talk about<br />
you do talk about<br />
the helping people find accomodations they need for math<br />
or the helping someone who is being left behind and expected to fail, <br /> not graduate, <br /> who cares <br /> who cares <br /> who cares, <br />
to pass<br />
because all they needed was someone to walk through methods together one on one until they had the patterns sorted out rather than mixed together<br />
or the catching someone up, so they could leave "life skills" like they wanted<br />
or the showing someone proofs because they were just so so bored and needed something fun<br />
or the various other academic things<br />
which certainly all mattered</p>
<p>you can talk<br />
you do talk<br />
about the fact that i could easily personally change standardized test scores<br />
by looking at people as people and as their needs as personal<br />
by helping each person<br />
each person<br />
people people people we're people<br />
not numbers on a test</p>
<p>but you forget<br />
so often<br />
of the person drowning of depression from the abuse of school who needed a hand<br />
someone to just say i see you<br />
i care<br />
you matter<br />
i am one of us too<br />
i am one of me<br />
me<br />
i am a me<br />
not what others are building me into</p>
<p>you forget<br />
the pain and the pain and the pain<br />
and the comfort<br />
and the maybe someone actually showing you that there are ways to exist<br />
that maybe you can be an adult<br />
that maybe adulthood exists at all
</p>
<p>you forget<br />
the trying<br />
flailing<br />
failing<br />
pain<br />
of existing</p><p>
</p><p>and that being okay to hurt sometimes<br />
because others are doing that too<br />
because you are surviving<br />
in a world that hates you</p>
<p>you forget</p>
<p>the necessity to not be alone<br />
the necessity to have someone just simply care</p>
<p>the necessity<br />
to have someone see you as human</p><p></p><p></p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-31477402547412427052022-06-04T13:36:00.000-04:002022-06-04T13:36:38.652-04:00My mask is pain, not neurotypicality <p>When I can't figure out how to follow directions, I look disabled. I know I do.</p>
<p>When I use the walls to help me keep track of where I am, I look disabled. </p>
<p>When I can't figure out what has happened if things have moved from where I expect them. When I can't keep my body still no matter how hard I try. <i>When I use an electronic voice to talk</i> I look disabled.</p>
<p>And I mask.</p>
<p>Some of my doctors assume I only use AAC because of autism. Others, assume it is only because of my migraines. I can show up in the emergency room with people I've never met before, and have them assume the reason I'm using AAC is due to chronic pain, because they notice my pain before my autism <i>even when I am using AAC</i></p>
<p>So yes, I mask. I mask for my safety. I mask for the safety of others I care about. And nobody will ever assume I am neurotypical. Nobody will ever assume I am abled. But they will overlook autism, because they choose to, because I can make it so that people notice other disabilities first (and because others will similarly do this to me, applying a mask to me when I am not masking because they don't <i>want</i> to see me as autistic even if I am handflapping and otherwise stereotypical).</p>
<p>I mask, because I need to. And no descriptions of masking that I see will describe me. Because they assume you try to look neurotypical, that you can try to look neurotypical, that you want to try to look neurotypical, that you can look neurotypical enough to get away with existing and survive in that manner.</p>
<p>And I can't. I look disabled and I look neurodivergent. I know that. So I mask my way. My mask is pain, not neurotypicality. My mask is not pretending I am someone I am not, but being open and loud, and overshadowing myself.</p>
<p>I've found that so many people don't want to think about the idea of people being multiply disabled, to the point of if they notice one disability, they erase all others. If you are autistic, you are only autistic. But if you are otherwise disabled, that is similarly the only disabilty. Changing what disability aides I use, people instantly change the ways they dehumanize me. I can't <i>be</i> the person who needs all of these. I can only be what is there in that moment, and dehumanized as such.</p>
<p>And as such masking, can involve this choice of how you are seen, which is that one and single disability that anyone will acknowledge. Choosing to be actively visibly disabled, forcefully so. And in ways that are going to be less stigmatized than being autistic is.</p>
<p>It is dehumanizing to be unable to be me. But it is also safety, to be seen as using AAC because of migraines, to walk into walls using crutches, or to be unable to find anything because my brain doesn't understand how to visual process anything that's changed and have tinted lenses mean I'm treated better. </p>
<p>It's dehumanizing to be erased, but it's also safety to hide, even when that hiding is hiding in plain sight, doing <i>exactly the same things</i>, acting exactly the same ways, and only having the assumptions other people make change.</p>
<p>And that, safety, that can be lifesaving.</p>
<p>I mask. And my mask is most often chronic migraines.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-58823066209733478552022-02-21T17:58:00.000-05:002022-02-21T17:58:16.009-05:00Support is Support, not Force<p>I'm disabled. I need support. I needed support when I was a child. I need support now.</p>
<p>I have supported people. I support people now. I have supported children. I have supported other adults. </p>
<p>And this matters. Because there are all of these assumptions that if you are Disabled you Can't Do Things. You Need Help. You need things done for you. You need things decided for you.</p>
<p>There are these decisions, that we need Supported. Where by this they mean other people come in and do what they think we need. Other people come in and move our bodies without our consent. Other people come in and change our homes without our consent. Other people come in and make decisions about what we're doing moment to moment. Other people come in and choose and choose and choose and do and do and do. </p>
<p>And we can't choose. Because we're disabled. We need Support. </p>
<p>But that isn't support. None of that is. </p>
<p>Someone coming and moving things around my home around so that I can't find any of it doesn't help me no matter how much they said this is cleaner and better organized. Someone telling me what I need to do in the day doesn't help me even if they say this means I'll get through more things, because it doesn't <i>matter</i> if they're more things if its not what I want. Someone coming and moving my body doesn't help. </p>
<p>It is traumatizing to Need Support and be given the "support" of having all autonomy taken away from you. It is traumatizing to not be allowed to decide the own words you speak, how you move your own body, how to exist, in a world. But that's what happens. Because we need Support. And it is what is deemed Correct To Do to us. </p>
<p>I am disabled. I need support. That is true, even as much as I say that none of this helps, and that all of this is traumatizing. I can't suddenly choose to not need support, because what people give to me under the name of support is controlling me, rather than helping me. </p>
<p>I am disabled. I was a disabled child. I needed more support then in many ways. I didn't know the language I know now; and yet I needed to communicate with people who treated me as lesser. My body was growing, with all of the unpredictabilities of trying to learn how a body moves. I needed support, and was so often given no choice. </p>
<p>Because, really, if you can't <b>choose</b> whether someone is helping you, are they supporting you, or are they deciding you obviously need something done? If you can't <i>choose</i>, who and how and when, and the details of what someone is doing and what someone isn't, then are they supporting you, or are they deciding for you what they think you are incapable of? </p>
<p>Because sure, maybe I can't do that, but I can try if I want to. And I can do that with you giving me a place to fall when I fail, because I can try and try again, and figure out what it is I want to do and how I want to do it. Or maybe I can't do that, but I can decide I do it anyways, because I don't see a choice, so instead I say I need you to do this which people say isn't going to be an option, that's not how support works, but it is how it works for me. </p>
<p>Or maybe, I say please, I need help, do this for me right now.</p>
<p>Becaues you know what,
</br>
it is my choice. </p>
<p>And someone Supporting me, by never asking, and never listening, and never letting me decide what is done and how? that isn't support. </p>
<p>Me being able to decide to do the impossible, or say I can't, and in either case, having someone do what <i>I say I need</i></p>
<p><b>That</b> is supporting me. </p>
<p>And I need support.
</br>
And I can get support.
</br>
And I can support others.
</br>
And I can be both and do both at the same times.</p>
<p>Because we live in this wonderful horrible interdependent world, of trying to survive. </p>
<p>And that takes support. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-5040172623007524522022-02-07T14:56:00.000-05:002022-02-07T14:56:08.644-05:00My name is typed, not spoken<p>My childhood is filled with I must speak this way. I must speak the right way. I must speak properly. I must speak the way I am told.</p>
<p>My childhood is also a childhood of teaching myself to type, by playing on on my mom's computer, before we ever had typing lessons in school. My childhood is getting the internet, and of finding forums.</p>
<p>Like many millenials I grew up both offline and online. We got the internet at home when I was 10. I was told I couldn't let anyone know who I was. By the time I was 13 I had a screenname that I was regularly using.</p>
<p>But, it was <a href=http://turtleisaverb.blogspot.com/2020/02/aim-and-aac-for-everyone.html> growing up on aim, that let me communicate</a>. It was the internet that gave me my voice. It was the internet that was where I was able to say things that weren't being deterimed by other people. It was the internet that was my freedom.</p>
<p>And this was the very simple reason. I could type.</p>
<p>I grew up being taught that my speech needed to work in certain ways. I grew up with speech being the priority the goal the most important thing. And at the same time, not being about me.</p>
<p>The internet was where I could type.</p>
<p>The internet was where rather than focusing on did I say this the right way no I didn't I was wrong I am messing up, I need to try to fix that, I can't get it right. And literally never getting to any content, I could find forums and spend hours typing about lord of the rings and getting to have it be about <i>something</i> and something of my choosing. It was where I could learn to <i>interact</i>, by getting a chance to do so.</p>.
<p>So, it's no wonder that my name is typed.</p>
<p>Because my name has always been typed.</p>
<p>By which I mean, I was in college when I realized that I would sometimes just not notice when people used my legal name, but would reliably notice if people used my screenname, and over the years as I first became more out as nonbinary, and evaluated my mental name, my screename is what always comes to mind first.</p>
<p>And yet, I always think of it as typed.</p>
<p>My name is typed. Not spoken.</p>
<p>It isn't that you can't speak my name aloud, it is that, it is typing, that is the primary interaction. Typing, that is the first place to go. Speech is secondary if that, and if not lower on the list.</p>
<p>Because it always has been, and because that is me and this is me. My name is typed. It is typed because it always has been growing up finding my own way to type. It is typed because that feels right. It is typed becaues I can neuroqueer my name and have done so throw away your centering of speech and say my name is <b>typed</b>. It is typed because I want it to be.</p>
<p>We might live in a world which prioritizes speech and thinks of speech as the first and formost.</p>
<p>but that isn't the world of my gender</p>
<p>my name belongs to the keyboard</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-73684193542384390412022-02-01T23:17:00.002-05:002022-02-01T23:17:42.626-05:00my speech is still not behavior<div>There is a pain in the comfort</div><div><br /></div><div>of silence</div><div>of forced waiting</div><div>of being able to think clearly</div><div>of being able to know who I am</div><div><br /></div><div>because I know it never can last</div><div><br /></div><div>There is a pain in the comfort of trying and failing and that being okay</div><div>because I never can try </div><div>never</div><div>never</div><div>never</div><div>it's always just a lie</div><div><br /></div><div>there is a pain</div><div>a pain</div><div>a pain</div><div>a pain</div><div>a true literal migraine</div><div><br /></div><div>in the exhaustion </div><div>no</div><div>the lack of exhaustion</div><div><br /></div><div>of being able to say this</div><div><br /></div><div>because usually I can't</div><div>because usually you are too worried about what I say and how I say it and if I say the right words</div><div>and it doesn't matter how much anyone says</div><div><br /></div><div>i </div><div>can't</div><div>fight</div><div>that</div><div><br /></div><div>because there is a child in me who doesn't know anything else</div><div><br /></div><div>there is me not knowing if i want to cry</div><div>or if there's me having so much less overwhelm that i can manage without a meltdown</div><div><br /></div><div>because it doesn't matter that people aren't understanding my body</div><div>when they don't listen to my words anyways</div><div><br /></div><div>so maybe let words at least be something i can control</div><div>rather than something so out of control that i don't understand that either</div><div>in a spiraling cacophony that is the world</div><div>and my body</div><div>and my mind</div><div>and everything in it</div><div>and nobody bothering to care</div><div><br /></div><div>when you aren't going to listen why does it bother how i say the words</div><div><br /></div><div>shouldn't i at least get to say the words i want</div><div><br /></div><div>oh, no</div><div>sorry</div><div>it only matters how i say them not what i say</div><div><br /></div><div>there is a pain</div><div>because</div><div>no matter</div><div>how</div><div>many </div><div>times</div><div>i know</div><div>that i can live like this</div><div>and understand myself</div><div><br /></div><div>it will never last</div><div><br /></div><div>it only takes one little drop</div><div><br /></div><div>because even now, years later</div><div><br /></div><div>i will never</div><div>actually</div><div>truly have control</div><div>of my own words</div>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-58369621570782552022021-06-26T16:29:00.000-04:002021-06-26T16:29:37.988-04:00Can vs Should<p>CN: anaphylaxis and not taking anaphylaxis seriously, abuse, talking about disabiliy and risk of death</p>
<p>If you ask me if I can teach, it doesn't matter how sick I am, it doesn't matter how symptomatic I am, it doesn't matter how much I <i>can't</i>, I will say yes. And I will do so.</p>
<p>And this is one of the reasons I can't teach.</p>
<p>So yes, I've gone to classrooms with migraines where I couldn't see, speak, or stand. Yes, I've signed up for a summer job while I still had significant enough post concussion syndrome that my doctors were regularly seeing me to monitor how my brain was doing. And yes, I've gone and taught in the middle of anaphylaxis. </p>
<p>Whether or not I "can" do this doesn't mean I <i>should</i> teach when I can't breathe enough to not have my vision go black if I try to walk 5 feet. Whether or not I can pretend, doesn't mean it is safe. </p>
<p>I don't think it is a huge controversional statement that I should not teach a class in the middle of anaphylaxis, while my throat is closing, while I'm producing enough phlegm that I'm emptying tissue boxes, while lying on the ground I'm not sure I'm staying still enough and in a position that keeps me from presyncope but sure that if I rise I'm into it, and yet I have been asked when in that state, if I could teach or if I needed someone to cover. </p>
<p>I said I could teach. And I did it. I got to the room before anyone was there, still not sure how I safely managed it, half sat half laid across pillows with them holding me up, and yet it managed to make it look like it was me being casual - it was a casual situation after all. And had my AAC to explain what was going on, and let people do what I told them to do. Nobody knows you can barely breathe if you're using AAC anyways. </p>
<p>So yeah, under some definitions I can teach in the middle of anaphylaxis. I have. And what should I have been doing? I should have been in the emergency room. I've had plenty of mild anaphyalaxis situations where emergency room wasn't necessary, but when for all I know my blood pressure is crashing given the presyncope feeling, and whether or not it is, sitting not to mention standing, is a question because of the struggle to breathe, that's not a situation to be messing around in. </p>
<p>Except, what I can force myself to do, and what I should do are different. And when the question in my mind, is teach, or leave those children with an adult who is abusive - and even asking me to do this was abusive, there's not a question in my mind that I am protecting those I can protect. It was dangerous and risking my life and truthfully, I couldn't think of any of that in the moment, what I could think was I can find a way do these things for these children. I'll find a way, at the cost of my own health and a risk of my life. </p>
<p>The things we can do, and the things we should do are not the same.</p>
<p>And so often, we're told because we can do things we don't need help. </p>
<p>But no, I can do things, because if I don't children are abused, not because I'm actually capable of it. </p>
<p>And that, can. <br>
That's killing us.</p>
<p>I am just lucky I got away, I was dragged away, I had people who could get me some kind of help I needed, and I wasn't forced into I "can" do this, even at the cost of my life.</p>
<p>Techincalities don't make can't into can. </p>
<p>And no, I can't do this, no matter what you say, and no matter how many times you ask. <br>(and no, don't ask me)</p>
<p>We can say we can't.</p>
<p>Even when our can't doesn't agree with your idea of can and can't. Even when you'd rather say if we can force ourself at any cost, then we can, even when under every definition we <i>shouldn't</i> spend that much of our own being, because we can't do it, even while forcing ourselves, we can just pretend enough that people who don't care don't notice.</p>
<p>Our lives are worth too much to pretend otherwise</p>
<p>Our lives are worth too much for you decide what we can and can't do.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-18845063822592302972021-04-29T19:34:00.002-04:002021-04-29T19:34:28.182-04:00Growing up on AIM, I could communicate<p>I'm an autistic millenial. Like other people my age, I grew up in the internet of the late 90s and the early 2000s. I grew up on forums and reading blogs. I grew up with it being a big deal who had dial up and who didn't. I grew up around y2k. And I grew up with AIM. </p>
<p>I grew up in the time of AIM. And sure, AIM wasn't the only messanging program around, or the only messanger I used. I had AIM and MSN messanger and skype's text chat, and chatrooms associated with forums, and found my way to IRC. But I grew up with AIM; I grew up on AIM.</p>
<p>Because AIM was what everyone had, and in many ways AIM defined this time. If you didn't have an AIM account you were ostrocized, whether it was by people who'd bully you for everything, or friends still being why are you so weird. It was <i>expected</i>. And it was text chat.</p>
<p>I grew up in a time where a text chat was was the cool thing to do, it was the expected thing to do for completely everyone, as everyone moved online, and was finding ways to keep contact with friends. It was easy, it was convinient, and it was something that didn't make you stand out. Typing, text, things that <i>weren't speaking</i> weren't disability things, they were everyone.</p>
<p>And me? Who didn't get IM accounts for the longest time because I didn't understand why you'd want to have real time conversations if you weren't forced. Because I didn't want to deal with needing to process all of those things even more. What it did for me when I was dragged into this socializing, was being, this is <i>something I can do</i> when I didn't realize anything would be doable. </p>
<p>But I grew up in the time of AIM. And that meant that my learning and discovering how to communicate in text, and that I could communicate in text, and that it was possible to do things I didn't know was possible, was socially acceptable. It was expected, it was something you were supposed to do to have conversations in these instant messaging programs. If you did otherwise you were the weird one. I was able to figure out what I needed - but without social stigma of this discovery process. I was able to figure out what I needed - and with things being provided to me to search and try, and explore. I <i>wasn't</i> stigmatized for the discovery process of maybe I can actually communicate if you give me the ability to type.</p>
<p>I grew up on AIM, so this was what everyone was doing, whether they needed it for disability or not. In those early years it wasn't the slightest bit out of place, when it would have been seen more strange for not having an instant messaging account than for typing to friends when we were next to each other. </p>
<p>And yes, these times, where we talk about older generations calling and younger generations texting. Where we talk about the first generations of people growing up online and teens living on social media rather than on the phone as teens. They're talked about a lot in terms of differences in communication in general, but it's also worth thinking about these in terms of progress in terms of non-speech communication, in terms of what is normalized. </p>
<p>In some ways, the first AAC I used was AIM. I would send messages to people sitting next to me becuase I needed some way to speak when I couldn't. I pieced what I could do together using the internet. And in other ways, nobody thought this was weird, I wasn't some odd disabled person. My communication wasn't stigmatized. They didn't notice I couldn't speak. They were choosing to type too. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-55630741359930322432021-03-12T23:58:00.001-05:002021-03-12T23:58:45.514-05:00I like turtles (or AAC is really hard)<p><strike>I like turtles</strike></p>
<p>I first started seriously looking at symbol based AAC in my mid 20s. I was working and needed more support than I had in order to be able to do my job - this was something that seemed like it would mean I could work when I otherwise couldn't. Vocational rehab was supposed to get me a setup, but avoided doing so until I needed to quit with my brain and body being unable to keep up with the demands of work. </p>
<p>This meant I first got the symbol AAC I use in my late 20s, when I was able to afford it for myself. I'd graduated from college. I'd worked in the field of education. I'd started typing when I was young, and was regularly using typing based AAC. I was able to communicate using speech at least some of the time. And while none of what people do, or don't do is important to their worth, I'm making this clear, entirely for the next point.</p>
<p>It took months for me to be able to say anything besides "I like turtles" on my symbol based AAC.</p>
<p>AAC is hard. It is really hard. Communicating is hard. Language is hard. Learning these things is so many different things you need to do, you need to know, you need to learn and put together, and piece together. But - even for someone who had been regularly using English in multiple other forms - I could not say more than a single sentence - the same sentence always - on my system, for literal months.</p>
<p>And think about the expectations put on toddlers? To within a week or two be using this to communicate?</p>
<p>I could never have done that - and I had the advantage of choosing the app I wanted, so I knew it was one that the organization worked better for my brain. I had the advantage of being able to organize and reorganize and continue to reorganize my app to make it work better for me (and in the process learn how it was set up!) I had the advantage of decades of learning how my body coordinated, because as dyspraxic as I am now, I'm not 3 years old and trying to learn my same dyspraxic body. </p>
<p>I had the advantage that I had the choice and control, and that when I was practicing, I could look through other folders, trying to figure out anything else to say, and get overly confused and go back to just saying "I like turtles" yet again, and nobody would tell me I had the mind of a toddler, when I was 28, because I had gotten lucky enough to have control of who was around me as I was practicing. I had the advantage that I could lead the way, completely.</p>
<p>And still, it took months, where all I could say was "I like turtles". And months of practicing, in ways other people did not see, and would need to trust me that it was worth having this app and having paid for this app. And months, of figuring out things in my own very personal way. And returning and telling people that "I like turtles"</p>
<p>These expectations of children figuring out AAC in weeks, or even in months, are unrealistic. We are asking people to do incredibly difficult tasks of figuring out how to communicate in new ways. And it can be worth immnense effort to learn to communicate in new ways, and add these to the set of methods of communication. But that doesn't make it not, really, really hard. (I will note, that whether or not something that is difficult is worth it is going to vary, sometimes something will be worth it, sometimes it won't be and something else would be, everything is personal. I know for me, what is worth using for communication and effort and how immensely hard it is when multiple things are really hard, is going to vary moment to moment - that's okay. Communication is complex.)</p>
<p>We're asking people to learn to communicate in ways that abled adults can't, as they talk about how hard it is to model, and not being able to do the modeling for their children, and yet, there's this expectation that children can pick it up within a month, despite that difficulty</p>
<p>And beyond all of these expectations, there is the simple experience. This is hard. This is really hard. And that's okay for me to say that this is really hard for me still and was really hard, and even though it's sometimes the best I have, that doesn't change that it's hard.</p>
<p>And, the simple description of, figuring out AAC by repetition of even the same thing is something I needed to do and that's okay too. And if you haven't guessed, I like turtles.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-20736730351442402052021-02-13T00:56:00.001-05:002021-02-19T13:00:24.505-05:00My AAC is my normal voice<p>CN: abusive speech therapy</p>
<p>When I was a child I was put in speech therapy because I didn't speak properly.</p>
<p>Sounds don't work that way. They don't combine those ways. They are more predictable than that. Don't you know, don't you know, don't you know. </p>
<p>Just do this. (But how?)</p>
<p>Just do what I say. (I know I'm wrong. I'm trying, it's not good enough)</p>
<p>Say these again. You need to repeat until you do it right. (But, why does saying cat like you do matter? people already know what I say)</p>
<p>You aren't trying hard enough, nobody will ever understand you. (I can't make sounds go right order in words you don't make me say over and over again anyways. I'm not saying anything. I don't want more words to say over and over.)</p>
<p>You don't need anymore speech therapy. [You speak properly now] </p>
<p>Don't you know, that the people coming up to me and making fun of my voice is something that doesn't happen enough I don't know how to talk about it. I know my voice is uncanny valley. But none of this bullying that has lasted into adulthood happens. My speech is normal now. They said so.</p>
<p>Don't you know, I don't need any sorts of support, I can't just speak. My speech is normal you see. What I actually need for supports isn't what matters. It's what people deem as normal. It's what people deem as close enough to normal.</p>
<p>Don't you know, it's do I try hard enough, when anyone notices my speech isn't like theirs its because I'm not trying hard enough. Don't you know if I can't read aloud its because I'm not trying hard enough. Don't you know if I get overly fatigued and my mouth stops moving in anything like word positions its because I'm not trying hard enough. Don't you know I just need to try, with more energy than any person, non-disabled, or disabled has. Because I need to look like others want.</p>
<p>Or that's what I'm told. That's what I have been told. That's what I was told for much of my life.<p>
<p>I talk about not using AAC until I was an adult. I was told my speech was normal. I just needed to make it sound normal. It was just needing to try.</p>
<p>I wasn't directly told AAC was failing, but they didn't have to.</p>
<p>I was told I was normal I was told I was normal I was told I was normal. I was told I had to be normal.</p>
<p>If you don't speak like this nobody will understand you</p>
<p>There's no alternative. I wasn't told AAC was a failure, but they don't need to say that when you're told there's no alternative.</p>
<p>My AAC is my normal voice.</p>
<p>Do people have to be normal to be understood and important and relevant and <i>people</i>? No.</p>
<p>But if my speech is normal, then my AAC is my normal voice.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-48101460146332901582021-02-13T00:03:00.002-05:002021-02-13T00:03:47.172-05:00Why is saying nothing preferred? AAC at the doctors office<p>I do not need to ask why is it that I've had multiple doctors ask me why not everyone does this typing to them, but why?</p>
<p> Why are we so focused on speech as society, that even when you cannot speak because of illness you try, and won't turn to the phone you are already caring?</p>
<p>Why is speech so prioritized that typing is so much a failure, subhuman, thing to do, that saying nothing is preferred?</p>
<p>Why are these doctors, where it makes their lives easier, because I am the first patient in these scenerios, that they can easily get a picture of the situation, that treat me as something even close to human?</p>
<p>I know these answers. Or, at least I am not surprised by any of this. I was one of the people taught from birth how much I was a broken child because my speech wasn't like everyone else's. I am someone who has been told too many times to count how much my words don't exist, because I am typing. I am someone, with the trauma of forcing speech. I am someone with this in my body at all moments, as my body needs to remember how to respond to people, to communication.</p>
<p>But, at the same time. I cannot understand. I can't understand why someone would choose to be trying to talk through coughing so hard it is making you black out - and I've been directly told by a doctor I was the first patient they've ever seen that didn't try to do such a thing. It is so much easier, to not rely on the unreliable body parts which aren't working in these moments of illness.</p>
<p>I want to tell people, this is an option. I want to tell people, it's okay, you aren't taking it from some other people, if that's what they're afraid of. Or, if you are afraid of being like "those people" then get though this doctors appointment you need to get through and then read the words of <i>those people</i>. <a href="https://communicationfirst.org/LISTEN/">Listen</a>. You have so much to learn. </p>
<p>I want to tell people that this is an option. That, they don't need to speak at all moments of time, even if they do usually. Even if they do all the time, except for illnesses like bronchitis, such as I am referencing as an example here.</p>
<p>You aren't wrong if you use AAC because of laringytis or bronchitis or anything of this sort. It's great! It's for everyone. Use it.</p>
<p>I want to tell people this is an option. And society is wrong, in saying that you need to try to speak. You don't need to force yourself. You don't need to spend energy, or oxygen, or physical pain. You don't need to try to speak when you physically can't. You simply don't need to. And there are options. You can do what works.</p>
<p> I want to question how people using AAC in these moments is normalized, rather than if anyone else will see these doctors with AAC. I want to question what is being done now, rather than why I was the first. I want to know, what are we doing, so that people can communicate, however they can, whenever they can.</p>
<p>And I want that to mean everyone.<p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-4651220075694417302020-12-08T13:58:00.003-05:002020-12-08T14:13:01.503-05:00Not all languages look the same; our AAC needs to recognize that<p>I've been working on learning Finnish, and in order to do that, I've been trying to set up a Finnish AAC setup. If I am going to be actually learning a language, I need my AAC to support that language.</p>
<p>What I have found is that it doesn't support it. I can get a voice (and voice engines have a single voice choice, and there are so many languages that don't have any voices), but as I am trying to set up a symbol-based AAC, something I need, and use, it doesn't work.</p>
<p>I have spent an unreasonable amount of time searching, and yet, for all of my searching, all AAC starts from the assumption that languages work like English; that languages grammar work like English, or sure you might change word order between Subject Verb Object, Subject Object Verb, or so on but that can be just chosen with a different order of button presses. They come with assumptions that they can start with English, and order of button presses is all that might vary.</p>
<p>And yet it feels wrong, to not be able to label words as postpositions, with preposition as an option, but not postposition, for types of words. It is a challenge to make AAC work for me when I can add 8 inflections for a word and no more, like words never have more than 8 inflections, when working in a language with more than 8 inflections for the same word. Conguation works differently in different languages - we need to recognize this. Inflections for nouns, adjectives, and other parts of speech are work differently for different languages - we need to recognize this.</p>
<p>We need to, because currently everything is built around English. And not everytihng looks like English. And that means not all languages are supported. Because not all languages are English. And not all languages have the same structure as English.
</p>
<p>And all languages need AAC.</p>
<!--number of button presses to get to a word-->
<p>There is so much talk of how many button presses to get to words, but when additional folders need to be created, then the number of button presses has to go up - sometimes dramatically. Every test sentence I tried was at least double the number of button presses of what it'd take to say in English to say an equivalent in my current attempt of building a board set in Finnish because of trying to force it to work despite lack of support. This large number of button presses is in large part because of differences in inflections - I don't have the number of noun cases supported and need additional folders for every noun and adjective. I don't have the idea of a language that looks like this supported at all. </p>
<!--more examples-->
<p>But, there are many areas in which languages vary beyond this one example of noun cases - as well as many in which English is unusual. Tenses, questions, there's a lot of things that are just, we need to be able to support how it works in other languages as well. </p>
<!--agglunative languages-->
<p>I cannot find <i>any</i> symbol based AAC that looks comfortable to use with an agglunative language. And agglunative lanaguges exist.</p>
<p>People speak different languages. People have different native languages. People learn different languages. English is not the only language that exists. And limiting people to English because of their disability is a problem. Limiting people to only certain limited languages, because of their disabilities, is a problem. People speak different languages, not all languages look the same, our AAC needs to recognize that. And our AAC needs to support that.</p>
tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-37397422915938284962020-10-10T20:27:00.003-04:002020-10-10T20:31:43.120-04:00Being wrong<p> When I was a kid, I didn't know I was different than others.</p>
<p> Oh, I knew they hated me. I knew everything about me was wrong. But I didn't know I was different than them. I just thought I was hated. I just thought it was me. </p>
<p> When I was a kid, I didn't know I was different than others. </p>
<p> I knew people didn't take me seriously. I knew people didn't believe me. I knew people didn't treat me like what I was saying was true, when I was just saying basic things about myself. But I thought that was just how it was. </p>
<p>When I was a kid, I didn't know I was disabled.</p>
<p>I grew up around disability. I grew up being told about disability. I grew up writing stories about disability every time I was expected to write any sort of creative writing in school. And I didn't know I was disabled. Nobody told me.</p>
<p>I would be being pulled from class for speech therapy. More and more time trying to fix my speech into what others wanted. Me not understanding why I was there. But I didn't know I was disabled. Nobody told me.</p>
<p>I can't say I wasn't treated like I was disabled though, because I was. Adults talked to each other, around me, about not knowing my labels but knowing there was something wrong with me. I found out about this as an adult. I was forced into multiple forms of therapy. People treated me like I was wrong for being me. </p>
<p>But I didn't know why. And I didn't have words for any of this. And all I had was that people hated me.</p>
<p> I didn't know I was disabled. I didn't even know I was different. All I knew was that I was hated.</p>
<p> If I tell people I didn't know I was different there's assumptions that it didn't hurt me for me to not know. </p>
<p> The people around me knew. The treated me like they knew. I didn't know why they were doing so. Me not knowing didn't protect me from others knowing. </p>
<p> Often when people talk about when do you tell your child about their diagnosis people end up talking about your child already knows they just don't have the words for it. But, there's also, other people know. Not knowing isn't protection from others knowing. Not knowing doesn't keep your child out of abusive therapy. Not knowing doesn't mean your child is treated like everyone else. Not knowing doesn't keep your child safe.</p>
<p>I didn't know I was disabled. I wish others didn't know.</p>
<p>Because other's knew. And that meant I was still treated like I was disabled, even though I didn't have these words for my existance. Even though I wasn't able to find other pepole like me. Even though I didn't know there was any community. Even though I didn't know what there was that could help me.</p>
<p>I still was wrong in the eyes of others, and they still knew that, even if I didn't know why they thought I was wrong.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-26165768996154018542020-06-24T12:28:00.000-04:002020-06-24T13:13:14.789-04:00Why don't you ask them?<p> I interact with a lot of parents of disabled children, in a variety of settings. I think the most common question I am asked is approximately "so you have this same disability as my kid, what does my kid need?"<p>
<p>Why don't you ask them?</p>
<p>I don't know what your kid needs. I am glad! So glad you are asking me, looking for adults like me, who have similar disabilities to your child, to learn from. I think that can help so much with learning. But I don't know. I don't know the things that your child loves, the passions your child has, the thoughts your child thinks. I can't know them. I'm not your child.</p>
<p> I can give advice. I can tell you <a href=http://wearelikeyourchild.blogspot.com/>We Are Like Your Child</a>. I can tell you patterns exist, and that you should pay attention to patterns. I can talk to you. I can tell you things to read. I can help you find ways to learn how to listen to your child, and help you find ways to communicate with your child.</p>
<p>But I am not your child, and I cannot know what your child is thinking.</p>
<p>And similarly, you are not your child, and you cannot know what your child is thinking. You cannot know what your child can understand. Have you asked? These questions you are bringing to me, have you brought them to your child, and heard their thoughts, instead of just hearing mine, as useful as hearing the thoughts of a disabled adult is? Because the decisions of your child are what matter here. Your child has autonomy. Your child needs autonomy.</p>
<p> Sometimes, that's the things I need to say, is <a href=http://turtleisaverb.blogspot.com/2019/01/your-child-is-child.html>your child is a child</a> and that means your child will grow up. Sometimes that's the things I need to say, is that you are being told disability is scary, and not, look, your child is a <i>person</i> we need the ability to make decisions over what we want to do, how we want to do it. We need to be able to rebel. We need to be able to enjoy things.</p>
<p>Sometimes that's the things I need to say, is simply. Have you asked? Because of being told, over and over, that you need to turn to professionals, and eventually that meaning you are learning you can ask me instead. But not realizing you can simply ask your child, when it's your child's life that you are controlling.</p>
<p>So have you?</p>
<p> Have you asked? Why don't you? </p>
<p> <i>"But they don't understand"</i></p>
<p> You. Don't. Know.</p>
<p> You don't know what your child is thinking. You don't know what your child knows. You don't know what your child <i>can</i> do and what your child <i>wants</i> to do and what your child has never been given a way to do, because of people never saying it is available, and what people have been making therapy therapy therapy therapy and never letting there be a way to <i>live</i> instead of try to have us get <i>fixed</i>. You don't know.</p>
<p> Do you know they understand? No. Do you know they don't? No. You have absolutely no reason to know they don't. So find a way that communicates with them. Pay attention. Provide options. Try things.</p>
<p> Do they need more time to process? Do they need pictures? Do they need things provided in multiple ways at once? Do they need reduction of sensory input? Do they need things the same, or different, or anything, when being asked questions? How works? I know what works for me, I don't know what works for others. But assuming it works for you, doesn't mean it works for your child, and because what works for you doesn't work for your child, doesn't mean your child doesn't understand. It means that particular option doesn't work. </p>
<p> Or you might tell me they can't answer you. But answering doesn't need to be in words.</p>
<p> Have you provided any sort of AAC system that isn't their body language anyways though? Have you looked into what works, and given time to learn, and treated it as communication and not as behavior to be learned?</p>
<p>Have you recognized body language as communication?</p>
<p>You're telling me echolalia and stims aren't communication. Bah. Are you paying attention? Sure, communication is multi-level and not always direct and when you're expecting the words to mean what they say, you aren't getting that. But are you paying attention to when they're said, why they're said, how they're said? Are you paying attention? </p>
<p>Are you listening to the communication that is your child's instead of expecting your child to match your communication to make it easier for you?</p>
<p>You ask me, what you need to do for your child, but are you asking your child, are you asking your child in your child's language, are you listening to your child's language in response, are you realizing not everyone needs to say your language always, in the first place?</p>
<p> I can help.</p>
<p>You should be asking questions. Your child should meet us. Your should read things written. Things by disabled adults are so so helpful, and <a href=https://30daysofautism.blog/2016/06/21/you-yes-you-need-autistic-friends/>you, yes you, need autistic friends</a>. But your child needs asked too.</p>
<p>Ask. Listen.</p>
<p>To us. And to your child.</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-25671869300737020032020-03-19T17:51:00.000-04:002020-03-19T17:51:49.388-04:00a case against modeling<p> But modeling is the Best Practice for teaching AAC you say. It's how you do it. It's the best way we know to help people learn to communicate. </p>
<p> I say no. Modeling isn't the best way to teach AAC. The best way to teach AAC is simply communicating. </p>
<p> There's a whole bunch out there about modeling, what is modeling, how you should model, what are the best ways to model, how to be more efficient with modeling, but what it comes down to is that it always is being unnatural. You aren't naturally communicating. You aren't using words like you usually do. You aren't putting together sounds, putting together words, playing with language, using language, using sentences, the way you usually do. It's not talking about things you talk about, the world around you, what people like, reading books together. It's not how we talk. </p>
<p> How people model, how people talk about modeling, is like you can only show one button at a time. We don't learn only one word at a time, we learn relationships between words, we learn words and how they interact with each other. We learn words that pile upon another, playing with each other. We learn how some words fit with each other, and others don't, at the same time as learning words. We learn language. Because, we hear these things. We have them offered to us. They are used around us. They are used. </p>
<p> How people model is like you have to go out of your way to find ways to use these words. The important words. The core words. The words you need to make sure people know. Like it matters what people learn first. The words we learn can be the words we learn. We can communicate in multiple ways. Pay attention to the communication. But, going out of the way, isn't natural, it doesn't make those words make sense, they don't fit.</p>
<p> How people model is like, you need to think, and plan, and use numbers, and it these numbers and counting, and looking at the data just about makes it into trials. It makes communication into behavior.</p>
<p> My communication isn't behavior. My AAC use isn't behavior. My life isnt a series of behaviors.</p>
<p> You want to teach AAC? </p>
<p> What about just talking? </p>
<p> What about simply, using AAC?</p>
<p> What about simply, communication being, having AAC, and using AAC, and that being your default method of communication. Type, buttons, learn them, know them. You want to ask for food, use it. You want to talk about the baby bird, use them. You want to read a book, use it. You want to play with sounds together, joyfully playing with the fact that noises are noises and you can make specific noises with specific letters? Use it. Just, use AAC, however it gets used. Whether that's talking about dogs and cats, or about advanced mathematics, or both. </p>
<p> This exposes AAC. This shows language. This shows buttons. This is natural, you using it when and how you would be. This interaction. This is interactive. This isn't sitting there using AAC like it is some thing you would never want to use, but I guess you need to push these buttons to show that they exist (because seriously "I need to say all the words and press one" WOW that is saying speech is better, and like there is something wrong with me for using AAC for all of them, not like I'd want to interact with someone doing that to me. I would <i> choose</i> not to interact with someone doing that to me.) This is communication.</p>
<p> Modeling isn't communication.</p>
<p> Using AAC. Communicating with AAC, is letting someone communicate back, however they choose, is listening, is responding, is paying attention and learning someone else's language, as well as learning and communicating with an AAC app, but the important central part of this is that it's communicating. It's an interaction between multiple people. It's an interaction.</p>
<p> You want to teach AAC?</p>
<p> Use it</p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-4333410133685143852020-02-18T16:00:00.003-05:002020-02-18T16:00:32.873-05:00you wouldn't claim I don't know the words<p>You don't say I don't know words, that I don't know meaning, when I drop them. When my natural speech patterns (typing patterns really, we shouldn't call all word patterns, all word choice, speech patterns). When my natural word choice doesn't include pronouns in many situations, because they are just unnecessary. You know what I mean.</p>
<p>You don't say I don't know words, when I talk to people, about pro-drop and aux-drop. I know the terms. That makes it acceptable.</p>
<p>(That makes it acceptable because I was taught the words. Because I'm an adult. Who was treated like I could learn.)</p>
<p>You don't say I only know nouns, because my choice of how to say "I am hungry" is "food?" </p>
<p>but I mean, why would you say anything else? It says all you need to. </p>
<p>And meaningfully. You don't say you. <i><b>Yourself.</b></i> Don't know these words, when you do it yourself. I pretty much guarantee, you yourself, are dropping words from so called "proper english" what you <i>claim</i> is proper, and what you are trying to force upon people, because "they don't don't know the words" or "how do I know they know the words" or any other thing claiming people <i>don't know</i> something because they <i>choose not to use it</i>, just because they are disabled. Because what you use isn't what we are supposed to use. </p>
<p>it's okay for me. Because I know how to talk about what I'm doing. Because I was given the <i>chance</i> to <i> learn</i> which is being denied from others. </p>
<p>You don't claim I don't know the words.</p>
<p>Except, if you met me, and I was using my symbol based AAC, would you claim it then? </p>
<p>(I mean no, because when I'm using it I feel forced to use them all. I feel forced to not use natural language. I don't feel like it is truly a representation of how thoughts flow. It is helpful to me, but with how I have been treated with picture cards and with how picture cards and symbol based AAC is treated in general, I don't know how to make it natural language. I simply don't know.)</p>
<p>Would you claim it though? If I were to use my symbols like I do my typing? Or even, if you saw my typing AAC, would then, it be me not knowing words. Would I be instead of someone on the other side of a keyboard, someone who doesn't know things, because I would be now <i>supposed to</i> speak however you want, to prove myself, rather than to communicate.</p>
<p>Because language is meant to communicate. But treating it like this, it's not communication. </p>
<p>"How do I know if they know core words"</p>
<p>Do you know what they are saying? Are they successfully communicating? Is that the goal?</p>
<p>Or is proving their knowledge of core words the goal?</p>
<p>Is the goal getting across an idea?</p>
<p>Or the goal pretending to be normal</p>
<p>Except.</br>
Normal.</br>
Isn't.</br>
Even.</br>
Like.</br>
That.</p>
<p>You are trying to make us into robots. Claiming it is the only way speech works. And it has taken effort to learn that I don't have to do that. But still, you wouldn't claim that I don't know these words, when I'm choosing now not to use them. And others, who have never been given the opportunities I have, you are claiming do not understand. </p>
</p>There is no one way to speak. </p>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-52615424329210314322019-10-27T20:31:00.000-04:002019-10-27T20:31:49.074-04:00just because (some of) my stimming is socially acceptable doesn't mean its not stimming<p> My diagnostic report claimed that I didn't stim at all.</p>
<p> People who know me know how hilariously inaccurate a statement this is. Stimming is my default state of being.</p>
<p> I handflap. I climb on things. I jump. I clap. I make noises. My hands move. My fingers move. When stopping and thinking while writing I'll just as often tried to have turned upside somehow.</p>
<p> I have never been able to exist without the input of pressure, of things wrapping around me. Blankets, compression, outside things. I extend this to wearing cloaks because I need the input of blankets. </p>
<p> I have stim toys, but I don't need them. I didn't have them before I was diagnosed. I fiddle with things. I fidget. From my medical alert bracelet to the pins on my tablet, through what walls exist around me, I understand the world through stimming with my hands. And am always doing so.</p>
<p> I have self-injurious stims. I control my overload, my dissociation, my ability to keep track of the world with stims of all sorts.</p>
<p> And people see this. And people know this about me.</p>
<p> And I am claimed to not stim by professionals. Not just the diagnostic report, by others I've seen. I'm claimed to not stim by others who go you aren't like my child.</p>
<p> Because they don't pay attention to those. They don't see what they don't pay attention to.</p>
<p> They do see the socially acceptable stims. And they say those aren't stims. And then I don't stim at all in their minds.</p>
<p> I do yarn-crafts. I nalbind. I crochet. Repetitive motions. Hands doing things. Feeling the yarn and how it moves. It makes things. It's also a stim. I make things with yarn because I need my hands moving. Because without my hands moving I don't know what is going on in the word. Because when I'm not I get so much more overwhelmed, so much more overloaded, so much more confused. I make things with yarn because it helps me make sense in the world, and in the end I have things with yarn. That's a bonus. </p>
<p> But that can't be a stim. It's something neurotypicals do. It's a craft. It's for fun.</p>
<p> My understanding is dependent on my motions. But my motions don't count if its anything someone else does. </p>
<p> Even when I've found its easier to just pick up my yarn and have it there than to get so overwhelmed I. just. stop.</p>
<p> I get less overwhelmed this way. I get less overloaded.</p>
<p> But its a socially acceptable stim, so you don't see it.</p>
<p> You don't see my typing, how I need to type, because I need my hands to keep moving. The ways that I multitask and type things completely unrelated in conversations because it makes me remember better, makes me understand better. That's just me not paying attention. That's me being a lazy millennial. Not so socially acceptable, but denied still. </p>
<p> You don't see that petting animals, that having them with me, isn't just emotional, that without the feel of the fur, without the beat of the heart, I can't regulate myself. That I am going to go to them first always, because I mean of course I will, but that something as simple as resting my hand on the side of a dog lying next to me will give me necessary sensory feedback. Not just I like dogs. </p>
<p> You don't see these things, because everyone does. Because its not stimming when everyone does. Because everyone stims. But you call it abnormal for me, because I'm autistic.</p>
<p> And also, you deny it for me, because you want to deny I'm autistic, because I'm not like those people. Because I'm an adult. Because I'm typing this. Because anything you can find to deny me is a thing to deny me.</p>
<p> And I'm autistic, and I have my stims and I love my stims. And I know they're there. And I also know I have stims that are seen as so completely normal that they are overlooked, from things I do with tools, like my yarn, to with just my body - pacing, so many ways of showing excitement (seriously how often do you see neurotypicals handflap when excited, its so often, its just pathologized for us), bodies move because they move, in ways they move.</p>
<p>I know I have my stims. Things you want to remove and things you don't, things you call autistic and things you don't, things you deny from me and things you don't. Admitting them makes it harder to "not like my child". Seeing me flap and climb and jump off of chairs in the middle of the college campus lounge while I was going to school there, makes it harder to say that I'm just someone going to college, not someone who doesn't move like that - because I'm both, because we can be both. </p>
<p> So its denied, its picking the moments I use socially acceptable stims and saying that's all.</p>
<p> The reality is you stim too.</p>
<p> And stimming is a wonderful thing.</p>
tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0tag:blogger.com,1999:blog-7330514565040708582.post-18184229204428701562019-10-18T00:07:00.000-04:002019-10-18T00:07:35.633-04:00you claim those existAccommodations<br>
<br>
Yeah, you claim those ever exist.<br>
<br>
I'm told they're for "people like me", given as reasons you don't need to make spaces accessible, yelled at for taking too much.<br>
<br>
You claim they exist.<br>
<br>
Or I mean, I can get accommodated, sometimes, rarely. But only for some labels, only if I talk the right way, only if you see me the right way, and even then I'm more likely to have things promised and never appear. I can get someone to recognize my disability, to not immediately treat me as it's a personal failing, if I make it entirely about them and not about me.<br>
<br>
I'm autistic.<br>
<br>
What, you think I could have someone care?<br>
<br>
You tell people so often you need to accommodate us, you show all the inspo porn of people going out of their way to pretend to treat us like human for half a moment. You think anyone would care so much as to do something I say I need directly?<br>
<br>
Because it doesn't happen.<br>
<br>
It never does.<br>
<br>
Well, unless I instead say "I have severe migraines" because I'm struggling with sensory overload but holding it together enough to say something. And I don't want to deal with the migraines that come from sensory overload either.<br>
<br>
But if they hear the label autistic they don't care. You don't care.<br>
<br>
I'm just supposed to do better. I'm supposed to act like you want. I'm supposed to be fixed. It's behavioral don't I know.<br>
<br>
Even when I'm using my AAC, it's a choice if it's autism that you think, and if it's concussion if it's migraine, if it's some legitimate neurological reason I might be listened to.<br>
<br>
Probably not, but maybe.<br>
<br>
Probably it's too hard. Probably it's too much to think about. Probably it's but how could I expect that much.<br>
<br>
Even when it's tell me how to get away. Or when to. Even when I'm saying I'll do everything I just need to know what to do.<br>
<br>
It's too hard to try.<br>
<br>
It's too hard to listen.<br>
<br>
Its too hard to care about me.<div><br></div><div>I'm told about accommodations, have it made into blaming me, why am I not trying hard enough to make people do what I need, I just need to ask. </div><div><br></div><div>No matter what I do they don't listen, but why should I need to spend more energy on trying to go anywhere than anything I would get to do.</div><div><br></div><div>I'm told this is for everyone.</div><div><br></div><div>Which just means I get to know who they think everyone is.</div><div>
<br></div>tuttleturtle42http://www.blogger.com/profile/10200741889496874805noreply@blogger.com0