Not long ago, I sat in the back of a classroom listening to a student lecture on Autism Spectrum Disorder (ASD). My view from the back of the classroom gave me a sort of observational vantage point in which I could take in individual reactions and notice how other students responded to the information being shared. The student speaker had obviously done a considerable amount of preparation for the lecture and shared statistics about etiology, diagnosis, treatment, and such. However, I still felt myself begin to bristle internally. This well-intending student was following a deficiency-based language to discuss Autistic individuals. Language usage in this way had a distancing effect between those carrying a diagnostic label and everyone else. As I shifted uncomfortably in my seat, I wondered why the language that was being used was so off-putting to me and how I had come to understand the strengths-based approach when considering disability.
Early on in the IL-LEND experience, we reviewed the use of language using a person-first or identity-first model when engaging in conversations with and about disabled people. There were several different ways of considering these other models. Individuals seemed to prefer one way or another depending on how it was used, for what purpose it was used, and what type of tone the language was presented in. The takeaway, however, was that different individuals had different preferences for using either a person-first or identity-first model when discussing disability.
After these early experiences in IL-LEND with the person-first or identity-first model, I called up a close friend with a disability.
“Sarah (pseudonym),” I exclaimed, “you have to tell me what you think about these models!”
After some discussion, my friend dropped some golden wisdom that has stuck with me ever since.
“Well,” she said, “I guess I prefer person-first language when other people are discussing my disability with me. It is obvious that I have a disability when you look at me, but I am not just my disability. There is so much a part of me that is not my disability.”
We discussed more details about her lived experience with a disability and the reactions and words she has had to endure over the years. When I hung up the phone, I walked away with two deep impressions. First, the use of language matters. Language is linked to identity and has the power to be positive and/or discriminatory. Second, the use of person-first or identity-first language seems to differ across disabilities and individualized preferences.
So, as I sat in the back of that classroom thinking about my IL-LEND experience, person-first or identity-first language, and the honest conversation I had with my friend about the lived experience of disability, I realized that I was upset with the lecture because the language being used lacked respect for those carrying an identity of ASD. Also, I recognized the power of language choice again.
These experiences and feelings got me thinking. Here I am, in a doctoral program in a health-related discipline, and the language choices I select influence those around me – not only my patients but also my fellow clinicians-in-training, colleagues, and community.
What would it look like to build into my clinical practice, community engagement, and/or individual conversational exchanges a purposeful language of respect and consideration of person-first or identity-first choices?
How could I shape my own use of language to understand individual preferences as I grow into a practicing clinician?
While I am still working out exactly how these questions can be answered in my daily exchanges, the point is that I am continuing to work out answers to these questions and carefully watch my own use of language to be more respectful to those with disabilities.
What would healthcare look like if we all committed to this change?
- JC
More resources:
https://psycnet.apa.org/record/2015-03427-001
https://link.springer.com/article/10.1007/s10803-020-04858-w
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371927/
