In 2010 I met Mary (a pseudonym). She was 42 years old and had been living in a long-term care facility for 5 years. She had aggressive MS, and just 10 years earlier she had been a barrel rider in the rodeo. There was only one other person in the facility under the age of 65, and she lived in a separate wing to Mary. She spent 23 hours a day, alone, in her room. Her life was miserable.
The institution was clean with lots of activities on offer, but everything was aimed at the typical resident, who was probably 85 years old and with some form of dementia. I came away feeling scared that this might be my future, and furious that this was how younger disabled adults were treated -warehoused and forgotten in a system that did not hear them or recognize their unique needs.
I needed to know more to be able to challenge politicians and policy makers, to present them with coherent, comprehensive arguments for change.
This led me to UBC Okanagan, to Dr. Rachelle Hole and a PhD, with a dissertation title “Younger Disabled Adults in Long-Term Care: A Foucauldian Genealogy” (2025). Through this research I established what had been seen with Mary - that these younger disabled adults were not seen or heard, and that this had always been the way. Quotes from the work of Townsend (1962) and Hunt (1966), were just as true now as they had been in the 1960s. My research showed that many things had changed in long-term care over the years in the ways that it was organized and managed, but nothing had happened to change the lives of those actually living in the facilities. A lot of baggage had been accumulated but no change had been made.
Change must happen. We must induce a crisis in our long-term care institutions to make sure that change happens for our younger disabled adults.
We must ask What Younger Disabled Adults Want, and make it happen.
More details on this new research project will unfold over the rest of 2025.