I'm becoming obsessed with the word "dignity." Look up the terms "Alzheimer's and dignity" on amazon.com and you get three pages of publications on the subject, many with a more euphonious use of "dementia" with "dignity." Google the terms and you get more pages about dignity. Talk to a social worker about dementia and the word dignity is bound to appear. Talk in our new class (with me and Prof. Lori Yancura of Family Resources) at UHM about dementia and--lo and behold!--that word enters the room again. To have dementia with dignity is, of course, the state of being before you finally "die with dignity." That's probably another kettle of fish.
My earliest memories of the word come out of the 1960s, I suspect, when "dignity," like "articulate," was often used to praise African Americans who, if they carried themselves well (as it were) and spoke with ease, were both dignified and articulate. So my suspicion of the word "dignity" may come from the association I have been the word and a paternalistic (Joe Bidenesque) expression of approval. Dignity means you're "clean"--more on that soon.
As I tell my students to do, I go to the Oxford English Dictionary for assistance. There I find definition "1.a. The quality of being worthy or honourable; worthiness, worth, nobleness, excellence," and "1.b. the quality of being worthy of something; desert, merit. Obs. rare." I can see the corridor get longer: what then is "worth," is "excellence"? Does "being worthy" come from within, without, or is it a combination of the two? Must we earn our worth, or is it inherent, as Jefferson wrote? And why is it crucial to preserve it in the face of dementia and death?
When I click on an article entitled, "Preserving the Dignity of a Person with Alzheimer's Disease," by Kim Warchol, I find another version of this definition, this one from Merriam-Webster, followed by a neat section on "sense of self," used to explain the term further. The author posits that having a "strong sense of self" provides one with dignity, whereas losing that "sense of self" (as one inevitably does in dementia) leads to a loss of dignity; dignity based on one's own sense of self yields to dignity based on another's sense of oneself. "Therefore, if the quality of the interactions between this person and their family, care partners and community members are all negative, the person will not feel worthy of esteem or respect, thereby losing dignity." But whose dignity is lost? Is it the dignity of the person with dementia, or the dignity offered by the person without? And whose dignity might that be?
In the introduction to the special feature of EOAGH on dementia, I wrote (by way of Fred Wah) on the desire expressed by Alzheimer's patients to "go home." Home is the spatial equivalent of the time one felt at home, or one was young, or one still remembers. When she first entered the Alzheimer's home, my mother considered her home to be Wooster, Ohio, where her mother had lived out the end of her life, though I'd never heard her speak of Wooster as home before the onset of her dementia. Canton, maybe, or Meadville. This article on dignity in Alzheimer's joins the notion of "dignity" with that of "home" in an intriguing, if not exactly believable, way. Under the subtitle, "Elopement," Warchol writes: "If the person with ADRD [dementia, in short] feels unimportant, lost and misplaced they may 'seek to go home'. Remember the person is often not seeking the bricks and mortar of home but the feeling of home. Home is a place of dignity and respect." Never once did my speak of her relationship with her mother as one of "dignity and respect," so already I'm wondering at this neat bringing together of notions. The writer also attributes swearing to this lack of dignity, though contact with dementia patients makes it seem more likely that loss of inhibition in language sometimes comes with the disease, rather than a perceived "lack of dignity."
I'm hardly opposed to the proposed solutions to the lack of dignity this author writers about. Showing respect, loving the person with Alzheimer's, positive feedback, learning the person's life story, all of these are "worthy" and serve to create better care-giving (a double positive, that word). But it seems to me that the emphasis on "dignity" belongs more to the family-member than to the person with the illness, more to the outside than to the inside. I think suddenly of Allen Ginsberg jumping up and down to the screams of The Clash, how it occurred to me that I was witnessing the act of a man who had completely forsaken "shame," how liberating that can seem. So, while the solutions are noble, nay dignified, they also strike me as based on a concept that becomes more dubious, or at least less necessary, the harder we look. Dignity covers a lot of ground, from a good carriage to a lack of poop in the pants, from strong self-regard to all those bodily functions we consider to be private. Dignity and privacy might well be put in contact with each other. Or dignity and secrecy. I will not show you how I feel and I will not show you how I poop, and that will lend me dignity.
Or will it?
Cambodia, 12/12: this man, who works in computers, got his shirt from a member of an NGO.
The Game (4)
1 week ago