Thinking through memory loss and disability
Monday reading #31
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!
Really appreciate this rec, I'm going to listen this week. My dad has a severe brain injury and (after his mom fought for guardianship of him) put him in a nursing home when he was 50. And now my partner has brain cancer that may lead to aphasia. So brains are on my mind a lot, especially the lack of care and options. Disability justice is gonna save us all.
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.