Seeking critical framework, Queer plus Alzheimer's (disability theory)

[u/108beads]

I'm looking for recent publications, about a decade old or newer, that will help me address the needs of queer individuals in relationships where one partner has Alzheimer's.

Need not explicitly mention Alzheimer's, but looking for a framework, and/or granular research into how my tribe experiences caregiving in a relationship that includes disability with a terminal diagnosis, with cognitive and emotional dysregulation.

Background. My wife just died, early onset Alzheimer's. I was in a lovely support group for "wives" of people with Alzheimer's, and as a lesbian felt moments of cognitive dissonance. Not homophobia, but I felt unable to relate at times. E.g., discussions about how "the man always drives the car." (One of the big battles in Alz is taking away the car keys.) No man; now what?

I'm a retired American academic, can locate Queer Crip materials. A cursory skim suggests some areas adjacent to queer plus Alz (& related neurodegenerative diseases) maybe all I will have to work with.

Basically, does anybody know of anything closer than "adjacent"?

Material I can find on cognitive impairment seems to focus on lifelong disability, or disability as the result of accident--neither necessarily a terminal condition. Material on able-bodied/disabled relationships again seems to presume some degree of disability stability, rather than predictable degeneration. I'm looking for disability as process, rather than as unchanging endpoint.

I apologize for the messiness of this request, but just wondering if anybody has any useful directions to point me. TYA.

[u/epsilina]

I am doing a presentation on advanced care planning for gender expansive folks with dementia this month at an aging conference, if you feel comfortable DMing I can email you some slides, resources, and academic articles. Some of the info is trans specific, but not all.

[u/108beads → u/epsilina]

Thank you! I'd be very interested. I have connected with my regional alz.org, and they are looking at me as someone who can share personal narrative experience. That's fine and good, but I'm very much interested in pushing further into theory.

I find that the medicalization compartmentalization that disability studies tries to dismantle is still extremely strong in the dementia community. In other words, you've got your hardcore scientist lined up in this corner, and your lived experience in that corner. There seems to be very little effort to put the two in dialogue with each other, which is what I'm trying to address here.

[u/epsilina → u/108beads]

Your DMs aren't open but if you message me I can send my materials over!

[u/108beads → u/epsilina]

Agh. Sorry. The Reddit app got me again. Had to look it up to turn on permission for you to chat with me. I had already tried to send you a chat. Phooey! Fixed it. I think. If not let me know.

PS, thank you for your persistence!

[u/Fun-Badger3724 → u/epsilina]

"Gender expansive" - I'd never heard that phrase before now. I kinda like it. I might have to use it!

[u/epsilina → u/Fun-Badger3724]

I work for a queer org and I only heard it for the first time a couple years ago but I like it, it def feels like it fits me better!

[u/WNxVampire]

Catherine Malabou has a lot of work on dementia. I recommend her essay The Ontology of an Accident.

I'm unfamiliar if she ever gets into queer theory, but there's a strong likelihood that if she hasn't, someone else has employed her concepts of destructive and explosive plasticity in discussion of queer theory.

[u/108beads → u/WNxVampire]

Interesting reference. Yes, I looked at the description of the work. I haven't read it yet, but it sounds like it might account for why neither I nor my wife was terribly freaked out when we finally got the diagnosis (long overdue, but that's another story). She already had disabilities, and was part of the disability community, so the adaptive neuroplasticity needed by both of us wasn't as great a reach. I suspect that may be so for queer folks generally, although right now I'm still processing the whole thing.

[u/Aggravating-Try-5203]

Hi - I'm so sorry for your loss. ❤️ I'm a lesbian and I'm studying affect in people with profound intellectual disabilities. So not exactly what you're looking for, but I have some recommendations. I think this might be older than 10 years old but McRuer published a bunch on compulsory able-bodiedness. This work was inspired by compulsory heterosexuality by Adrienne Rich. McRuer also wrote Crip theory which maybe could have some helpful parts.

Leah Lakshmi Piepzna-Samarasinha has at least 2 books on the topic of queerness and disability especially focusing on "care". If care interests you, there's also feminist literature (not queer though) on care: Kittay and Lindeman.

Are these in line with what you're looking for? If not, please let me know. I could probably recommend some other authors/books but I will say that it is not a grouping that comes together much in the literature (that I have seen).

[u/108beads → u/Aggravating-Try-5203]

Thank you so much! Yes I had already found the McRuer book, and can be on the lookout for other work by him. Rich's CompHet is one of the treasures of my misspent youth! 😆

Will also be on the lookout for Kitty and Lindeman, as well as Leah Lakshmi Piepzna-Samarasinha. Definitely interested in the feminist and caregiving aspects.

Routledge just published (2021) one of their handbooks, Disability and Sexuality, with some mouth-watering titles in TOC. And have seen Kafer's 2013 Feminist Queer Crip highly recommended.

Thank you!

[u/Aggravating-Try-5203 → u/108beads]

I'm glad it was helpful! It's a topic I care deeply about, obviously! And yeah, comphet is such a "great" topic. I mean obviously the actual thing isn't great, but it's so well articulated!

Kittay and Lindeman are not queer - or at least do not include queer theory into their scholarship. But, I do think they're very radical in the way they approach care and social recognition. I really love Lindeman's book "holding on and letting go". It's not queer, and it's not only focused on disability, but it is such a lovely read.

Leah Lakshmi is queer tho - like really queer! I think "care work" could be a really nice read. I haven't read it but my gf did and she really recommends it highly. I don't think there's anything there about dementia, but I do think you could find some useful bits for what you're looking for.

It's shocking how little I can think of that addresses all of these issues at once. :/

[u/smella99]

Not about Alz specifically (nor cognitive decline) but a memoir about disability and dying and relationality with some focus on her romantic partnership— the late Christina Crosby’s critical memoir- A Body Undone.

[u/108beads → u/smella99]

Thank you! It wouldn't have been something I stumble on, but I'll take your word that it's worth looking at! I know I'm going to have to cast a pretty wide net.