The other day I was excited to finally see in writing something I’ve had happen in conversation countless times.
In an article about Donna Thomson’s experience of being unable to be with her non-verbal son, who has been isolated in a group home because of covid precautions, the journalist wrote:
“Anyone who’s had an eye on the news recently is aware of the atrocities happening in some long-term care facilities, and the grief and rage of family members who stand outside the doors, unable to help their elders inside.”
Did you catch it?
“unable to help their elders inside.”
He sure looks good for an elderly gentleman.
I had been under the impression that Nick and I are about the same age. Donna confirmed that he’s 32.
The stereotype that it is the elderly who require care is so pervasive that it overrides the facts. Even when they’re right in front of us. Even when we’re talking about the care of a 32 year old.
To tell you the story of how this became a pet peeve of mine, we’re going to take a quick detour to my childhood in the olden days of MTV.
The opening credits to Daria sum up my attitude toward sports:
I showed up to elementary school not knowing how to catch or throw. It didn’t occur to my gym teacher to show me. I eventually ended up in ESL gym [English as a Second Language, now ELL] for my own safety.
The girls in ESL gym managed to teach me how to play tennis and, most importantly, didn’t get angry at me for not getting it right on the first try. I realized sports could be fun, under some rare circumstances.
It was this experience that inspired me to sign up with YouQuest. YouQuest is a day program for people with young onset dementia in Calgary. It was created by and is run in partnership with people with young onset dementia.
It was through YouQuest that I finally learned how to shoot a basketball at the age of 36.
One might assume that someone with dementia might be unaware of how many times they had already shown me how to hold the ball and aim. Let me assure you that the “dementia patients” teaching me to play basketball were entirely aware of how many times it took me to get it.
They patiently showed me, then offered encouragement and corrections. They realized there was no way we could play an actual game of basketball, so shifted into using rules where we could play something.
When I told friends about it, they kept shifting the people on my team from people in their 40s and 50s to people in their 90s.
Not everyone knows that young onset dementia refers to people diagnosed before the age of 65 or that people in their 30s can develop dementia.
Still, the word “young” in young onset dementia is a hint that they’ve got a few decades before they can play ball with the Splash Sisters.
Why’s it so hard to imagine someone with dementia can play basketball?
We’ve all encountered the phenomena that people often assume someone with physical disabilities is also impaired mentally.
Apparently people assume people with cognitive differences are also physically impaired.
The thing about this tendency to shift all care into eldercare is that it is not limited to people who lack caregiving experience.
I hadn’t given any though to it until a friend, who is younger than me and has a father who attends a day program for people with young onset dementia, started using eldercare terms while I was telling him about YouQuest.
His dad is not frail. He had to retire early, so now he spends his free time sailing, playing tennis, and hiking. All activities he loves and remains very good at, even if he requires care to do them safely.
We both know his dad could beat him on the basketball court.
These pervasive notions filter into how policies are written, how funding is allocated, and who gets support. Even when we know better.
What makes us internalize this myth so deeply?
While growing up in the US leaves me incredibly grateful to now be covered by Ontario’s provincial health coverage, it falls far short of providing adequately for people with chronic illnesses and disabilities. This Twitter thread is a great overview of the situation Canadians are facing during the pandemic. Thanks to Donna for the link!
Today is Disability Day of Mourning, to remember disabled people who were murdered by their families. Besides marking the loss of lives, it’s important to speak up against the ways media coverage of filicide and domestic violence differs when the victim is disabled.
We were discussing this in one of our groups recently, after one more murder made the news. I know it’s entirely possible to have empathy for the perpetrator of a violent act, as a person dealing with the lack of societal support, without denigrating the suffering of or denying the worth of the victim.
There is an index of names, organized by year, so you can mark this loss and hold them in your memory. You can remember them privately or join a virtual vigil.
Do you listen to Terrible, Thanks for Asking? They’re doing a series on care work right now, featuring Eve Rodsky, Sunita Puri, Ai-jen Poo, and several other family caregivers whose names you’ll recognize.
There’s a helpful overview of how access to hospice is an intersectional issue in a recent issue of Anti-Racism Daily.