In December 2012, at age sixty-one, Judy received a diagnosis of early onset Alzheimer’s. The news was deeply distressing, igniting within me a burning anxiety over how I, a wheelchair user born with a spinal cord malformation and living with bunches of body parts that don’t work so well, could possibly help my able-bodied spouse as the disease robbed her of not just mental acuity but also physical strength. Thankfully, Judy was still relatively spry and lucid, and I thought it would be more productive to channel my energies into anticipating her future needs, starting with a new avenue of communication between us.
Ever since our first encounter, Judy has continuously, unobtrusively assisted me, making my life much easier and giving me the opportunity to live larger than I had thought possible. It started small.
In the hands of many able-bodied writers, our story would most likely be portrayed as yet another example of what people in the disability community often call “inspiration porn.” These superficial, supposedly feel-good vignettes usually cast the disabled person as the hero, or superhero, and the able-bodied spouse or parent as the saint or angel. Those terms, as the diplomatic editor in me would say, are perhaps poor word choices. Judy was more direct.
Poppycock, she once stated, adding, Calling me a saint or angel dehumanizes both of us. I can be crabby, judgmental, and impatient, and calling me either of those words insults you, suggesting you are so awful that no ordinary human would love you.
Read more or listen to the audio in The Walrus.
Featured image: Shutterstock: TORONTO, CANADA – JUNE 25, 2017: Street at Bloor-Yorkville district, one of Canada’s most exclusive shopping districts.