Monday, August 26, 2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, August 21, 2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, August 20, 2019

My AAC isn't for you

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

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

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

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

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

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

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