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Tuesday, June 27, 2023

ethylene gas

Content Warnings: compliance training, working in systems which knowingly oppress, refrences to ABA and suicide ideations in children

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.

These people aren't admitting or recognizing their compliance in the system. These people aren't truly even recognizing the broken system.

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.

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.

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.

If you are working, in special education, as a therapist, somewhere with disabled people, you are complicit by working in this system.

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.

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.

When I am there in the room while someone once again has their body taken from them 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.

But that didn't make me not complicit.

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.

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.

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.

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.

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.

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.

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 does things it still hurts it still causes pain.

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.

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.

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 fix everyone and everything despite the system. We do not need to be fixed. It's power and hurt and pain and trauma and trying to survive the best we can.

Saturday, June 24, 2023

Words? This is words, but not everything is

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.

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.

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.

But time and choice and communication is complex.

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?

Because is that the right way to communicate. It's great and important, and its slow and takes effort.

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.

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.

(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.)

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.

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.

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.

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.

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.

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.

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.

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.

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.

It's I can do what is right for me, whatever that is, because I am a person.
And I can have relationships with people who treat me as a person.
And its not about one method of communcation, its about communicating, as a person, with other people.