I’m a huge fan of Erich Fromm. I geek out over his books, lectures, and letters as he dives into identity. Growing up Marxist, I understand his humanist approach to the subject. It’s comfortable. His work lends important context to the discussion on such topics of interest to the autistic community like Universal Basic Income, as well as questions about who will care for our autistic loved ones once we’re gone.
Into this space comes another author and researcher, Monique Botha. I found her through her primary authorship of a very interesting article. Here’s the citation:
Botha, M., Hanlon, J. & Williams, G.L. Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti. J Autism Dev Disord (2021). https://doi.org/10.1007/s10803-020-04858-w
Here’s the abstract:
In response to Vivanti’s ‘Ask The Editor…’ paper [Journal of Autism and Developmental Disorders, 50(2), 691–693], we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.
As I was reading the piece, I kept going back to Fromm and the essential question of what will become of our autistic loved ones when we die? Do we have agency and dignity simply because we’re human? Or must we, as the eugenicists believe, justify our existence at every turn?
As I process the eventual death of an influential elder in my life, I keep coming back to this topic. As an undergrad, I used to spend summers with my grandmother whilst working in the big city. One summer, I had trouble finding a job and was very short of cash. This elder came to me for the rent. Rent he was charging me for the room and board for the time in my grandmother’s house. When I didn’t have enough, he quoted 2 Thessalonians 3:10, “If anyone is not willing to work, let him not eat.” He was family, but completely unable to be charitable. Thus, I sold all of my available possessions to pay him.
Now, the elder is in his last years and in need of care. He has since moved far away and I’m not in a place to be able to provide for his myriad needs. Unlike the Apostle Paul, I don’t hold the view that the unable should be cast aside. I fell out from my Marxist upbringing when I saw how the disabled are treated in Marxism. Hint: Paul and Lenin are in total agreement, and my elder’s opinion was more informed by Lenin and eugenics than by a desire to follow Paul’s advice.
The State, in it’s many forms, has told the people that there exists a safety net. Yet so few can find it in times of need. Thus, what becomes of the most vulnerable? What will become of us when we can no longer produce and earn a wage? As inflation skyrockets, I think that the plans that I made to provide for myself will prove inadequate. I may have to leave America to a more affordable place, like Malaysia or Vietnam.
What does all of this have to do with the journal article? Language matters. How we frame discussions matter. How we treat people over which we have power or authority matters. That … and autistic people have very long memories of trauma.
— December 16, 2023 Note —
Some of the materials herein have made it into my books, No Place for Autism? and Holistic Language Instruction. No Place for Autism was released in February 2023 from Lived Places Publishing and is available at Amazon and other major book retailers worldwide. Holistic Language Instruction will be out in 2024.