Monday Reading is my weekly recommendation of something I’ve found thought-provoking or fascinating. Sometimes it is about something I have read. Sometimes it is about television or food or music or projects I care about supporting. Sometimes I do not send it on Monday. Please share with anyone who might like the vibes!
The news that talk show host Wendy Williams has been diagnosed with aphasia and dementia reminded me of a podcast interview I heard in 2022 that helped me think about aging and disability in new ways.
I’ve been thinking about Kate Swaffer’s interview on Flash Forward ever since I heard it in 2022. Swaffer was diagnosed with dementia in her late 40s and astonished to find that she was simply supposed to accept that her life was over:
KATE:
We’re not actually told to live well when we’re diagnosed. The predominant message is to… if you’re working, younger, to give up work. And in my case, I lost my job. So, nobody told me that dementia caused disabilities. The medical community still see dementia as a death sentence. They have a fatalistic, therapeutic, nihilistic approach to dementia and mostly don’t yet even recommend rehabilitation. If I’d had a stroke, aged 49, I knew exactly what would have happened and how I would have been supported by the healthcare system.ROSE:
But that’s not what happens to people with dementia, Kate says. People with dementia are diagnosed and basically told to go home, and get their affairs in order, and wait it out until the end.KATE:
That is so wrong that we do that to people with dementia. And you know, I’ve been quoted as having said for years: dementia is the only condition I know of, as a retired health care professional, where you’re not told to fight for your life. You’re just told to go home and die. And I refuse to accept the negative, tragic narrative of dementia because that is disrespectful, and demeaning, and causes people to give up. It causes people to lose hope.
Swaffer’s interview yields a powerful question: what if we treat dementia like a disability—”something people can adapt to, that can be managed as it progresses”? This is a particularly expansive thought for a condition so often seen as age-related, because disability is a part of aging. We are all implicated in disability justice because if we live long enough, everyone becomes disabled. Yet somehow we don’t think of dementia in quite the same way as other disabilities, a condition through which we can be supported as it progresses. In depictions of dementia, for example, we’re sort of prodded into seeing the ways a person tries to support their declining memory with sadness and horror—post-it notes reminding someone to turn the stove off or to take a left turn at a certain street are framed as symbols of decline. But they’re also support technologies, aren’t they? If you can live independently for longer because you have post-it notes all over your house reminding you where you keep your keys, isn’t that … good?
Flash Forward is really cool; it combines audio fiction with reporting. The Swaffer interview is from one of several episodes on dementia, which accompany a fiction project titled “Welcome to Vanguard Estates.”
See you soon!
Thanks for this. A friend’s wife is living with aphasia and early onset dementia. They have a teenage daughter. The situation is heartbreaking, including the isolation of caregiving.
Interestingly - there's also nothing in the way of support for people with cognitive impairment that isn't even dementia and isn't progressive! I quite literally just walked in from an appointment with a neuropsychologist with my dad who has lost his ability to make short term memories due to oxygen deficiency that has now been treated. I can't even get an answer to whether there are rehab or memory therapy options that could help him exercise his memory....or if that's even a thing? I also have no options for a person to help us set up systems to help him do his daily routine without an actual person taking it over for him. The first stop for all of it is just having him be supervised by a caregiver, which is just bonkers?
At this point we have home health because my mother is significantly physically disabled due to a stroke - so I am able to not just become his mom becuase there's someone else who will be his mom. But why isn't there anyone who will come and help him determine the best ways for him to still run his own life? Or like, at least participate? I have to just google a lot to find resources for "try a to-do list," but I don't know how to adjust it for him, or what the best way to help him determine that stuff is - and also HE'S MY DAD AND HE'S SO ANNOYING AND OMG I CAN'T DO THIS PART BECAUSE ALL I DO IS YELL AT HIM. My last question at this appointment was "is there anyone who can help us like..come up with systems and infrastructure to like...tell us how life should work now?" and the answer was "no." We can only get an OT to do a safety assessment, so like...all the things I've already done because keeping someone physically safe is actually fairly simple to look up. And the neuropsych was like, I know what you're asking, like I can tell what you mean but there isn't. Um.....ok??