Scene from Blazing Saddles:
Waco Kid: “Look at that.” (Holds right hand out)
Bart: “Steady as a rock!”
Waco: “Yeah…but I shoot with this one!” (Holds left hand up, trembling uncontrollably)
Few people could deliver the inane dialogue of a Mel Brooks script as ably as Gene Wilder. As most film buffs know by now, Wilder passed away on Monday, due to complications of Alzheimer’s disease. In light of that, and with the onset of Dementia Awareness Month, I’ve decided to push back Part 4 of my “Hidden Restraint” blog by a few days, in order to share a few thoughts.
Many well-known people have lived with Alzheimer’s or another form of dementia, from actors (such as Wilder and Rita Hayworth) to politicians (Ronald Reagan, Margaret Thatcher, Winston Churchill), artists and musicians (Willem De Kooning, Aaron Copeland), writers, (Agatha Christie, Terry Pratchett), activists (Rosa Parks), and sports figures (Pat Summit, Sugar Ray Robinson).
There are many more, and I realize my list is limited by my own cultural sphere—add whatever names you wish. These names and others will be prominently displayed in awareness campaigns over the coming weeks; although equally important are the millions of people who have lived with the diagnosis outside of the mantle of celebrity.
But even for one as well known as Wilder, the diagnosis came as a surprise to most, as it had not been publically shared before now. In the announcement of his death, Wilder’s family included the following clarification:
“We understand for all the emotional and physical challenges this situation presented we have been among the lucky ones—this illness-pirate, unlike in so many cases, never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality. The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him ‘there’s Willy Wonka,’ would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion. He simply couldn’t bear the idea of one less smile in the world.”
While I greatly admired Wilder and respect everyone’s right to decide how to live, the concealment of his diagnosis is very troubling to me. The above statement affirms that Wilder’s family saw his enduring humanity through his years living with Alzheimer’s, but they (and he) had nevertheless bought into the stigma that any public appearance would be fraught with images of loss, disability, confusion, and ‘trouble.’ So it has been with other celebrities living with the diagnosis (e.g., Reagan, Christie), quickly removed from the public eye, so that we won’t have to endure their tragic decline.
The difficulty with this is that it feeds into the stigmas and fears surrounding the condition, and serves to dehumanize the very people our campaigns pledge to support. Anything that reinforces stigma becomes our greatest barrier—to early detection, adequate support, enlightened care, public education, and a tolerant society capable of being truly “dementia-friendly.”
And what about those children? I think that any child old enough to watch Willie Wonka without enduring horrible nightmares is also old enough to learn about aging, frailty, and mortality. There have long been children’s books about aging and death (two personal favorites are Mordecai Gerstein’s The Mountains of Tibet and Bob Munsch’s Love You Forever). There is now an emerging crop of books that explain the phenomenon of cognitive change to young children, including Barbara Schnurbush’s Striped Shirts and Flowered Pants: A Story About Alzheimer’s Disease for Young Children (recently referenced in ChangingAging).
There is a multitude of intergenerational programs in which children interact regularly with people living with dementia, which has helped to prevent the stigma and fear among children that has been instilled in most adults. The keys to a dementia-friendly community are visibility, understanding, and inclusion.
Even without knowing all of the reasoning behind Wilder’s decision to keep his illness a secret, one can infer from the above statement that stigma was a big factor. And there are countless stories of people living with dementia who have been marginalized or pushed into hiding for just those reasons. As Faith Riverstone, who lives with the diagnosis, recently posted: “I loved Gene Wilder…but there is a reason he kept his dementia a secret…that reason still exists…and absolutely no one is addressing it…”
All people have the right to privacy regarding their health information. But those who are forced to hide due to societal stigmas are deprived of the most basic human right—the right to be human.
Stories like this are the reason I am in awe of the many people living with a diagnosis of dementia who are out there publically—speaking out, educating society, and advocating for their rights. These are true profiles in courage.
As we enter Dementia Awareness Month, may we remember that the operative word in that title is “Awareness.”
Rest in peace, Kid.
Kirsty Porter says
WOW, Mr. Power – a terrific article! I found this post on the Alzheimer’s Cafe Facebook page and my goodness, I got a little overwhelmed indeed because of how closely linked our views are – especially the inclusion of children in your post! I too have written my deep concerns about Mr Wilder and his family’s decision to keep his diagnosis a secret (http://bit.ly/2ckQjJC) and I would be very humbled if you would read it and comment or give feedback.
You are right awareness is awareness and not a passive little word between Alzheimers and Month, and a collaborative effort can only make ‘Awareness’ a rock star! Its hard being courageous in the face of adversity for many caregivers and people with dementia alike, but of course this needs to change and I look forward to incorporating your articles, your work, ideals and Changingaging into my own awareness work (as I have happily just subscribed).
All the best Mr. Power and Team Changingaging!