#motor differences

A keynote speech that Sharisa Joy Kochmeister gave at a conference in 1997.

I compare dyspraxia to inertia. Inertia, as I understand it, is inability to move unless something else makes it possible. I easily relate to this. Dyspraxia is best defined in laymen's terms as an inability to make one's muscles do what one wants without great difficulty or assistance. Sometimes, it makes me "freeze in my tracks" or "forget" how to move, walk, chew, or swallow. It makes it difficult to do something as seemingly simple as nodding my head or shaping my fingers for sign language or walking downstairs alternating feet or using my eye muscles properly or my mouth, tongue, throat and facial muscles to speak clearly.

For most of my childhood years, I was, to even the most "objective observer," a failure at being "human," as defined by societal standards and medical "norms." Unfortunately, these standards and norms were designed by and decided upon by verbalizers for verbalizers, and are not remotely applicable to 'non-verbals' who have no other method of communication available.

Given all of these injustices, failure is the only guaranteed outcome -- a failure in this case that results in a verdict of "brainless," and a completely unjust sentence for the poor person being 'tested" of life-long imprisonment in the world of the 'hopelessly retarded." There are no "pardons" or "clemency" available, but in exceedingly rare instances, even these "living-death" sentences have actually been "overturned" because "new evidence" has finally "come to light."

Let me explain in the most personal of terms. I did not immediately magically become or start getting treated as "really intelligent" when I suddenly became "able to type." I had to attain "genius level" results on a wide battery of tests and "scales" in a variety of settings with different "examiners" from different "disciplines" before most of these people "in power" were willing to give me "credit' for more than a "modicum" of intelligence and cognitive abilities.

Just because we have a disability, we are not given the same learning opportunities like our neurotypical peers. We are segregated in classrooms where we are taught the same thing repeatedly, irrespective of our age or grade. I was tired of learning the same alphabet and numbers from kindergarten to 5th grade.Just because I could not show my teachers that I could understand everything that was taught to me, they assumed that I was not capable of any intelligent work. I was wrongly diagnosed as having an intellectual disability. Also, because I am nonspeaking, it was assumed that I couldn’t understand anything that was told to me. My parents advocated for a communication device for me for many years,but I was repeatedly denied one by the school district and every time the speech therapist told my mom that I did not have the ability to use it.

I would advise students with disabilities to believe in themselves, and to never give up, and to continue working hard to succeed in their education. I would also advise them to seek a mentor who has a disability they can identify with, who can support and guide them on their educational journey.

Nonspeaking artist Jeremy Sicil-Kira on the traits he looks for when interviewing support staff.

Happy people are essential to my well being because life is greatly difficult when you dearly have a body like mine, that does not respond to your wishes. Belief in my ability to frankly realize my dreams is important. I need to feel that the support person feels I am capable.

During the interview, truly the most important aspect is the candidate’s ability to listen to what my needs are as described by me. They must be able to understand what my mom tells them that I have said I want in terms of qualities. The most important quality I look for is the ability to learn how to be a good communication partner in supporting my style of communication. I have motor differences and sensory integration challenges that make it hard for me to initiate and get nicely moving and they need the ability to understand about this.

Jordyn Pallett, a nonspeaking autistic person with apraxia, explains the role of his communication partner.

Doing anything purposeful requires a minor miracle if done independently. I need to build motor patterns for everything, always with an outside register and initiator until pathways are strongly myelinated. Lots of verbal prompting and sometimes even physically being assisted help me really build a strong brain-body connection where one didn’t exist. The end goal is autonomy, but it always starts with being taught. How do you learn a new skill? I bet much the same way, but without your body fighting to flee the whole time. Being dependent on outside initiation, feedback, and support is how we all get good at anything to the point that it becomes automatic and purposeful.

The speech and motor differences of my form of autism also influence my relationships. My sense of agency is much less individualistic, much less human-centered. I need help to do things neurotypicals take for granted—like tying my shoes and wiping my mouth.

In a wide-open space, I move constantly, conversing with the agitated air around me. I can spend hours with my environment, not in it– the categories “human” and “non-human” crumbling like a sandcastle at the beach, the white, frothy wave of my attention spreading generously over everything.

In my poem, viewers find themselves immersed in the unfamiliar swirling, swooning world of the sensory, and I remind typical people, as the doctor did, that their prized sense of normalcy comes at a cost. A cost exacted not just from them, but from every other being within our ecosystem. Such a rational distant-I cannot grasp that we are all made up of matter and so must care for each other.