‘No’, said Coraline quietly. ‘I asked you not to call me Caroline. It’s Coraline’. – Neil Richard MacKinnon Gaiman
“One’s identity derives not from one’s nation or blood but from the language one uses.” – Minae Mizumura
Language and identity are so entwined that you cannot have one without the other. The language we use to describe and talk about identity has so much power but we rarely stop to consider how much impact it has on those we talk about.
I will raise my hand in shame. As a clinician, I have not always considered the effect of the words I choose. My reports were full of “impaired communication skills”, “limited ability”, “low-level skills”. And I felt quite free to use these labels because my clients would not be the ones to read my reports. If my report was directed to my client, the language would be different. So at least on some level, I recognised how negative these labels are. Yet I used them about people who as speech and language therapist I truly care for.
And then suddenly my world changed. And with my world my perception changed too.
Over the last year, my family members have all received the label of “Autistic Spectrum Disorder”. So, in the words from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM 5) we were found to show “persistent deficits in social communication and interaction”, “restricted and repetitive patterns of behaviour” and our symptoms were found to “cause significant impairment in functioning”.
These labels are really difficult to stomach when I apply them to myself and my dearest. And they feel wrong and hurtful because they are so entrenched in the medical model of disability. In the language of disorders, diseases, conditions the connotation is that if you receive treatment (e.g., medication, surgery, therapy) you might get cured.
But I am not ill. I am a fit and healthy woman in her mid-forties who has a fascinating job, a loving family and friends, and who in the middle of global pandemic does not feel that her life is lacking, restricted, impaired.
Looking at the descriptions it is easy to start to wonder.
“Am I defective?”, “Am I broken?”, “Do I need a doctor?”.
No. Definitely not.
I am not defective, broken, warped. I am different. This difference leads to my disability in a neurotypical world. I will always be Autistic. No one can change my neurology, no matter how hard I try you cannot change the way my brain operates.
I will always find difficult to follow conversations in large groups because of my monotropic brain. So, I may appear withdrawn and uninterested. But try talking to me one to one and you will find that I have got plenty to say and I am happy to listen.
I will always appear repetitive in what I do or talk about. This is because I like to do things I enjoy. Why wouldn’t I? Everyone likes to do what they enjoy. And usually, I focus on one or two things at a time. Again, it is due to this word: monotropic. Yes, it may be difficult to listen to me talking about karate all the time, but hey, at least I do know a lot about it. Unlike many people who glide from topic to topic never really reaching the essence.
Who gets to decide whether these “symptoms” cause significant impairment in someone’s functioning? The diagnosticians? The carers? Because it’s definitely not the person in the centre of care. Some of us on the surface may appear to function well but we hide a lot of trauma. Others may appear cut off from the world outside but if you spend time with them you might get this strange feeling that actually they are happier than your average Tom, Dick, or Harry.
So, this takes me back to language. Language is the essence; it shapes identity. So, think about how your words can shape the identity of the person in front of you. Think about the power of words. And please, listen to how the person in front of you wants to be spoken to and about.
Blogger bio: Autistic SLT, and Karate junkie @WbJusti
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