Disabled an Important Part of Who I Am

“My brother is a person with a disability. Not a disabled person,” this was the opening line of my 7th grade public speech. My parents taught me person first language with the explanation that we need to see that everyone is a person first before we talk about their disability. Today, twenty years later, I identify as a dyslexic woman, NOT a woman with dyslexia and I try my best to ask people about their language preference. I must credit the autistic community for this change. 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

Jim Sinclair, an autistic self advocate, was the first person to write about identity first language in, Why I Dislike “Person First” Language 1999. He gave three reasons for using identity first language. First, that person first language implies that a person can be separate from their brain, Sinclair argued that this is not possible. The way our brains work impacts everything we experience, learn, and understand from the moment that we are born. Dyslexia has shaped the way that I understand the world, the way I process information, the way I connect ideas, and much, much more. Since Sinclair’s first proposition, autistic people have discussed how autism is an essential part of who they are. 

Second, Sinclair discussed how we describe important parts of who someone is as adjectives. S2C, Spelling to Communicate, I-ASC, Autism, nonspeakersFor example, I am a Dutch-Flemish, white, woman. I wouldn’t say that I am a person with womanness, Dutchness, or whiteness. These characteristics are described as adjectives because they are important parts of who I am and what has shaped me. Sinclair argued that autism goes deeper than culture because it impacts how a person relates to themselves, their bodies, and society at large. For this reason, Sinclair argued that using autism as an adjective to describe himself was more important than a cultural identifier. Finally, and perhaps most important to me, Sinclair suggested that saying “person with autism,” implies that autism is a bad thing. In language, we only separate ourselves from negative things. Therefore, if we encourage people to separate themselves from their disability, we are sending the message that disability is so stigmatizing that we should be ashamed, hide and try to distance ourselves from it. Like many neurodivergent people however, I want to be proud of who I am, including my dyslexia. There are many things around me that try to make me believe that dyslexia is a negative thing, such as the way in which reading and writing are prioritized within our school system, the expectation to read in public settings, and the lack of understanding of dyslexia by most people. By continuing to identify as dyslexic however, I’m challenging the people around me to see dyslexia as part of who I am, a positive thing, S2C, Spelling to Communicate, I-ASC, Autism, nonspeakerssomething that I don’t want to distance myself from.

Autistic people continue to support this shift towards identity first language and autism pride. In fact, some people have started to use a capital A in Autistic to identify that autism is a socially and culturally created group of people with whom they identify. This is similar to the Deaf community who refer to themselves with a capital to spotlight that Deafness is a cultural identity and not a disabled identity. In many polls that ask autistic people how they prefer to identify, the majority consistently state that they prefer identity first language.  For this reason, I-ASC’s default way of referring to nonspeaking, minimally speaking, unreliably speaking, autistic, and neurodivergent people is with identity first language. 

Although I-ASC’s default may be identity first language, I-ASC also believes strongly in agency and autonomy of nonspeaking people. In line with this ethic, whenever possible, S2C practitioners will ask their students what their preference is and make every effort to use the language that individuals prefer. We are not here to tell nonspeakers what to think or do; we are here to empower their voices, support their mission, and create opportunities for them to develop communication, agency, autonomy, and access. 

 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakersWritten by Monica van Schaik

Monica van Schaik (member of the I-ASC Leadership Cadre and coordinator of Spellers & Allies Advocacy Network) is an S2C Practitioner living in Kitchener, Canada. 

 

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