I am not my son...even in those times speech escapes me.
"Nonspeaking" is an identity I will not claim.
I was tagged in the comments of a post that talked about being situationally speaking and having periods in which speech is no longer accessible to them in those moments.
I understand this completely as this is an experience I have often.
I do not agree with referring to this experience as “Nonspeaking”. And I was tagged in this post because my feelings on this are out there floating around.
I was bothered by the nature of the responses of the OP who did everything but listen to those who voiced their concerns on using Nonspeaking to describe an experience that doesn’t extend to the entirety of their existence.
One could pull from dictionaries. One could justify their reasoning for using whatever they feel is necessary to describe themselves. I won’t ever touch how someone perceives themselves, but I do ask that you listen to what it is I have to say/write. And I don’t want you to conflate listen with authority. I am not telling you what to do, I am asking that you take a deep consideration to the next words I share and you think more deeply about what it is that you are doing and the community that it impacts in doing so.
Language is a beautiful thing. There’s so many words that can be used to describe and articulate our individual and collective experiences. The Nonspeaking community, like many marginalized communities, have been trying to find the best way to describe their unique experiences, to have a sense of belonging and community, and to define their culture. At the present time, Nonspeaking is what is work best for them. In the future, this may change. And this single word encapsulates an entire experience. This experience in which the lack of access to speech at all times, or the overwhelming majority of time, influences every single bit of who they are, how this world perceives them, and how it responds to them.
I cannot speak at times. It is literally difficult to produce speech. But I have the privilege of accessing alternative modes of communication with ease. This is something that my son does not have. Not with his apraxia being far more challenging than mine or his brother’s. And because we can access alternatives with ease, the world perceives us differently than it does my son. They respond in ways they would not with us. They are more likely to assume there is someone within this skin while many will actively choose to see vacant eyes when they gaze upon my son.
His entire world is influenced by his inability to speak.
This experience matters. This experience is one that needs to be exalted. This is an experience that needs more visibility. It doesn’t need us taking one more thing from them. It doesn’t need us speaking over them, hiding them, pushing them aside.
It should go without saying that referring to them in such a way does not take away from the struggles you face. This isn’t about dismissing your struggle, it’s about the inclusion of theirs. It’s about drawing attention to this beautiful community and acknowledging that they exist.
For more on this, check out the following post, which also happens to the be one that the person who tagged me provided for others to reference and read. I thank them for that.
Tiffy out. Enjoy the weekend.
On those who do not speak and those who claim their tongues
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.
I use the term situationally nonspeaking for myself, because sometimes I just cannot get words out. Sometimes I can still think, write, and understand words, so I don't think nonverbal makes sense. But at times I freeze, and cannot think or understand words either.
That said, I agree it is a very different experience than being nonspeaking, and using AAC full time. I've been trying to do a lot more reading, listening, and following to continue to grow and understand better other people's experiences. I appreciate everything you share.
I’ve seen a few low support needs / level 1 autistics / neurodiversity advocates say they are “level 3” and “semi verbal” Recently. IMO they’re doing that intentionally to center themselves in discussions about level 2/3 autistics.