ChangingAging’s LinkedIn (CALI) group has sparked a passionate and “intense” debate over one artist’s attempt to explore and talk about Alzheimer’s disease. Member Chet Williams started the conversation with this post:
“Like an old abandoned house: an alzheimer’s awareness photo exhibit” to be displayed at the Dementia Education Conference in Louisville, KY, March 3
My photo exhibit which features over 40 black and white photographs of old abandoned houses will be on display during the conference. “like an old abandoned house” draws a comparison on how time destroys a once vibrant residence, destroying memories and leaving them vacant and alone. The exhibit also incorporates personal stories from individuals whose loved ones have suffered from Alzheimer’s, education materials and photographs to bring awareness to Alzheimer’s.
Many CALI members are fierce Alzheimer’s advocates — including Dr. Richard Taylor, who lives with Alzheimer’s and blogs about it at Alzheimer’s Inside Out — and some took issue with the title and description of the exhibit. Richard commented:
Hello, it makes me uncomfortable to think of myself as a soon to be old abandoned house. This resident has no plans to move out of his house until two or three minutes after I have died. i will still still be home up until that moment. It is the assumption that I am not home because I don’t cut my grass like I formerly did, or like my neighbors now cut it; the assumption that I am not home because when you knock on my door I don’t answer in ways you can easily understand or are accustomed to seeing when you knock on doors of folks not living with dementia; it is the assumption that I am empty and abandoned when in fact this was, is, and will be until I die my home; these assumptions reinforce a view of folks living with dementia who are literally fading away. We aren’t! We won’t! We can’t, even if we wanted to. It is those around us who assume this is the case and stop visiting, stop talking to us, stop enabling us; start disabling us, start putting absolute safety over every other human activity, start telling others we aren’t home – these are the realities of living with dementia in the USA. Such is not as much the case in other cultures, in other living situations. I fear that thought obviously well intended the message these pictures produce creates pity rather than empathy, sadness rather than energy to live a whole and complete life, fear rather than reassurance. Including stores of and by other residents (caregivers) rather than of and by the residents themselves leaves the impression others can best tell my story – my story can/must be told by others. Not!. ….Richard
Lori La Bey of Alzheimer’s Speaks offered a good response in defense of the artist:
• Good comments Richard…As usual you make some great points. I guess without seeing the exhibit and knowing how they are looking at educating people it is hard to predict what will happen. I do however feel Art is something to be interrupted from many angles and sometimes coming from a “common perception or misconception you could say” and then twisting it can be very powerful way to make a shift. I wish I could go to one the exhibitions!
The entire comment thread has nearly two dozen posts and ChangingAging would like to commend Chet for sharing his exhibit with the group. This was Chet’s first ever post in a social media forum and he was caught a little bit by surprise by the intensity of the discussion. Chet — you did the right thing and contributed a great conversation to help Change Aging. Start with the conversation and proceed from there! Here’s one of Chet’s comments explaining the motivation behind the exhibit:
I appreciate your comments — let me provide a brief back story on the exhibit and how it evolved. While opening an assisted living community in eastern Kentucky, I was reading a book about Alzheimer’s and the phrase ” a person’s memory fades away like the memories of an old abandoned house”. This phrase just stuck with me and as a professional who has worked many health fairs, led support groups, spoke at senior expos, who has seen people “run” from the term Alzheimer’s and didn’t want to pick up information, etc. As I travel, the pharse stayed with me – and I thought if someone could develop an exhibit of old abandoned house and incorporate Alzheimer’s information and personal stories about “going home” then perhaps a door would open to educate people.
Well that someone was me — I am not a professional photographer, I am a senior care professional who cares about seniors and their families. The exhibit has been displayed at 20 locations in three different states and it gets comment but most of all it starts a conversation about Alzheimer’s.
I currently do not have a link to photographs but am working on a website and will post that once completed.
This is my first time to post anything to any wall and I was very hesitant to do so, but like I said before — if it starts a conversation – then I have succeeded.
You can join our group on LinkedIn here to read the full thread and join the conversation. Chet, can’t wait to see your photographs and share them on ChangingAging.