On those who do not speak and those who claim their tongues
The adoption of experiences not our own must stop.
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It isn’t lost on me that those who have the most difficulty accepting the perspective that Nonspeakers are not the same as those who situationally speak or have moments where they cannot form words from their mouths, moments where it is challenging to control their body, and moments where they may not be able to communicate at all, are (mostly) those who do not have close interaction with Nonspeakers.
They are the ones who feel as though the introduction of nuance and perspectives that do not mirror the majority is somehow taking from their story. That it is the exclusion of them with the inclusion of another.
Those who do not ignore, or deny, will co-opt. They adopt a life they do not know to claim advocacy brownie points on matters that do not impact them in the way it would those who actually live the life they have attempted to take on. The one who masks does not live a life like the one who cannot. The one who speaks, even situationally, does not live a life like the one who does not (or does so minimally).
The question then becomes if they were to sit in the spaces of those whose identity they wish to claim and just listened, what would they learn?
If they sat in those spaces and let those individuals share their stories, their histories, their contexts, what would they learn? Would they even be willing to do so? Or do they think they have it figured out?
Would they learn that to be nonspeaking is a whole body experience and that the world will allow you access to what they feel you are capable of, and because of that, Nonspeakers are often denied access to far more than those who situationally speak?
Would they learn that because they offer no words, no speech from their mouths ever, that they are often denied the opportunity to learn to read and write and type? Because while many might think you being a speaker who occasionally has moments of no speech, they will still view you capable of learning. They will probably lack patience, assume you aren’t trying, deny any of the struggles you are having…but they will still perceive that you are capable of acquiring reading, writing, and typing skills. So they will teach you.
They didn’t even try with my son. They never really did. Literacy and communication skills was something that was denied to my son because he was deemed incapable of learning such skills because he spoke no words. Ever.
Because his body moved in ways they couldn’t understand and at times they didn’t comprehend, he was deemed unreachable.
Literacy is incredibly important. Language acquisition is incredibly important. It’s integral to our everyday life and the driving force behind our expression and communication.
Would they really think that someone who lacks access to language and is often denied the opportunity for language acquisition experiences this world in the same way as someone who has language but is unable to use it at certain moments?
Would they learn that language is a tool to analyze behaviors but if one lacks the access to language and is not provided an opportunity to acquire language, what would one make of their behaviors? How would they be treated because of it?
Would they learn that so many Nonspeakers are considered Intellectually Disabled (ID)? This further keeps them from accessing the education and understanding that many other disabled persons receive. My son carries an ID diagnosis that I don’t feel he deserves. And he is not alone. This number is dropping, but it’s still pretty prevalent. Do you know the harm that comes from being misdiagnosed? Do you know the consequences of supports that don’t appropriately match what you need?
Would they learn that even in those moments where they feel they lack control that Nonspeakers are living with a lack of control every single day of their lives? In themselves and the loss of autonomy ascribed to them by those who feel they know what is best for them, who don’t fully understand them, or who are fed up with them.
Would they learn that one of the main things that Nonspeakers talk about is the lack of control and autonomy they have? Their movements are not their own, and this could be their own bodies working against their minds and/or the world imposing its will on them. They go where we want them to, do what we want them to, feed them what we want them to, wear what we want them to, play with what we want them to, and on and on. Do you lack control like this in your life?
Would they learn that they are developing their own culture? Their own way of living and being? We are literally witnessing the birth of culture that started a little bit ago but is beginning its blossom. And too many are trying to state that their experience isn’t all that different from theirs. The more they tap into who they are, the more they open themselves up with spelling, typing, AAC, etc. the more we will know.
They are developing their own symbols, their own language, their own artifacts, their own beliefs, their own values. This is a culture. This is a way of being. And it’s not one many of us can claim. Language influences how we think and perceive our physical and social worlds. It is that important.
And for someone with access to language in a way that generates reciprocal interactions with the world it impresses upon, even if they occasionally can not do so…that is a vastly different experience than someone who does not carry that same access to language. And the Nonspeaker can access language, we see that every single day, but their entire being is shaped by how they access that language and what this world views of how they do so.
And who they are.
This isn’t an experience I know. Nor is it one that I can claim.
I could do this all day, and one day I might. I might write this better, I might clean it up.
But not today.
Today I am sitting with my nonspeaking son and wondering how any person could feel as though I experience this life just as he does? I do not.
Today, I am sitting with my nonspeaking son and made the promise, same one I make every single day...
"this world is going to know you. I promise you that. And it will know you…because you told them."
Behind the share:
I shared this one on IG four months back. I stumbled across the text on my Google Docs last night and it hit home…again. There were many parts that led to my absence from social media, but I wanted to focus more on Aidan, and Nonspeakers. I am but one small blip on the world wide web, but from my corner of it, I have seen Nonspeakers talked over, talked down to, and talked through. I have seen others come onto my shares where I talked about Nonspeakers, much like this post, and attempt to tell me their experiences were exactly the same. Some even attempted to claim that my son’s experiences were less harsh than theirs because he had me there with him at all times to mitigate harm.
They wanted so badly to be centered in an experience that was not theirs. Instead of noting that they didn’t need to adopt another’s life to inform the world that theirs matters as well, they chose to make an enemy out of my son’s experiences and me for sharing them.