Title: Assistant Professor
University: Albion College
Email: kprice@albion.edu
Twitter: KPrice_AgeComm
Website: N/A
Description of Work:
Symposium Submission:
“One Less Smile”: Critically Examining Gene Wilder’s Spiral into Silence Related to the Public Stigma of Alzheimer’s Disease
To say Gene Wilder’s death in August 2016, at the age of 83, was shocking is perhaps a bit overstated given the actor’s advanced age, but the cause of death was a shock because it was the first time his Alzheimer’s diagnosis was made public. This revelation was made even more shocking by its timing, coming on the heels of legendary women’s basketball coach Pat Summit’s death from younger-onset Alzheimer’s disease in June 2016, as well as singer, songwriter Glen Campbell’s public journey through the disease.
Gene Wilder’s post-death disclosure is important for study because it more closely aligns with public perception and cultural appropriateness regarding Alzheimer’s disease (AD) than do Glen Campbell’s and Pat Summit’s high profile public advocacy for the disease. Alzheimer’s disease remains a highly stigmatized illness even though more than five million people in the United States have a diagnosis and over fifteen million family members act as caregivers (Alzheimer’s Association, 2016). Indeed, the stigma associated with AD, as well as courtesy stigma for caregivers, has been well documented (Piver, Nubukpo, Faure, Dumoitier, Couratier, & Clement, 2013; Werner & Heinik, 2008; Burgener & Berger, 2008; Holston, 2005; Benbow & Reynolds, 2000).
As an artifact worthy of examination, the statement released by Gene Wilder’s nephew shortly after his passing (Appendix A) illustrates many of the same thoughts and feelings those dealing with AD experience. In Wilder’s case, specifically, his decision to remain silent regarding his diagnosis was, reportedly, made not out of “vanity” but as a conscious desire to shield “countless young children that would call out to him ‘there’s Willy Wonka’” the pain of disappointment or confusion when Wilder could not appropriately respond (Natale, 2016). Wilder “simply couldn’t bear the idea of one less smile in the world” (Natale, 2016). The decision to remain silent, although deeply personal, can also be read as a function of socio-cultural factors, including the compounding stigma attributed to AD and aging, and our cultural muteness regarding this debilitating cognitive impairment.
This paper thus proposes to examine the impact of Gene Wilder’s decision to remain silent regarding his Alzheimer’s diagnosis, as well as his decision to release this information following his death. To do so, we focus exclusively on the statement released by Wilder’s family to announce his passing. The information provided in this statement serves as the only description of Wilder’s experience to date, and as we argue, says much more than its 204 words may suggest. We propose to examine Wilder’s decisions as grounded in current literature, reviewing the powerful role stigma plays in silencing individuals with AD, discussing the spiral of silence theory (Noelle-Neumann, 1974) as it relates to Wilder’s statement and AD generally, and arguing that the larger, cultural climate of shame associated with AD works to foreclose important interventions designed to increase awareness and compassion regarding this disease and, subsequently, funding for effective treatments and a cure. Implications of our analysis, with a focus on the role counter narratives of this devastating disease may play in breaking this silence will conclude the work.
A plethora of research has consistently upheld Noelle-Neumann’s (1974, 1993) contention that individuals, fearing social isolation, pay close attention to their environments to determine whether or not their beliefs align with or contradict the majority opinion (Matthes, 2015). If their views align, individuals are more likely to express themselves, whereas if their views contradict, individuals are more likely to remain silent.
The stigma associated with AD has led to the silencing of an entire segment of our population, one that is growing exponentially, as the Baby Boomer generation continues aging. This silence extends to funding of Alzheimer’s research, leading Harry Johns, Alzheimer’s Association CEO and President to note that although “…we have seen remarkable progress in the area of public health…Alzheimer’s is not one of the areas in which we have seen that level of discovery because of the chronic underinvestment in Alzheimer’s research…” (“Policy and Advocacy”).
Given the climate of pervasive stigma which has produced a spiral of silence around AD, it is not surprising that Gene Wilder, paying attention to this environment, would choose to keep his diagnosis and subsequent decline a secret until after his death. In the language of spiral of silence, Wilder, utilizing his “quasi-statistical” sense, perceived the opinion climate as, at best, unreceptive and, at worst, hostile, leading him to expressly avoid communication regarding his disease.
Wilder’s decision to remain silent is, however, somewhat surprising considering his strong advocacy for ovarian cancer after his then-wife, Gilda Radner, died from the illness in 1989, a time when cancer was also considered a stigmatized illness (Gurnon, Aug 31, 2016). Wilder worked to establish an ovarian cancer detection center in Los Angeles, as well as Gilda’s Club, designed to serve as “support centers for people with cancer” (Lewis, 2016, para. 35).
The disturbing parallels between Radner’s cancer and Wilder’s diagnosis of Alzheimer’s become even more clear in actor Seth Rogen’s testimony before Congress (Lombardi, 2014). Rogen, speaking on behalf of his mother-in-law who was diagnosed with younger-onset Alzheimer’s at age 55, remarked:
Another thing I didn’t realize until I was personally affected was the shame and stigma associated with the disease. It was before I was born, but I’m told of a time when cancer had a stigma that people were ashamed by. Celebrities and other public figures that were stricken would hide, rather than be voices of hope for people in similar situations, and although it’s turning, this is currently where we are largely at with Alzheimer’s disease, it seems like.
Why, then, was Wilder’s response to his own illness so reticent? Many reasons were likely at play, some more personal than others, and certainly some beyond the scope of this proposal. But, no explanation of his decision can be complete without an analysis of the social-cultural factors at play regarding Alzheimer’s disease, including its associated stigma and the climate of silence apparent in public perception of the disease.
References
Alzheimer’s Association. (2016). Policy and advocacy. Retrieved from: http://www.alz.org/research/funding/alzheimers_policy_and_advocacy.asp
Benbow, S. M., & Reynolds, D. (2000). Challenging the stigma of Alzheimer’s disease. Hospital Medicine, 63(1), 174-177.
Gurnon, E. (August 31, 2016). Gene Wilder and his Alzheimer’s secret. Forbes. Retrieved from http://www.forbes.com/sites/nextavenue/2016/08/31/gene-wilder-and-his-alzheimers-secret/#2392462aa926
Holston, E. C. (2005). Stigmatization in Alzheimer’s disease research on African American elders. Issues in Mental Health Nursing, 26, 1103-1127. doi.org/10.1080/01612840500280760
Lewis, D. (2016). Gene Wilder dies at 83; Star of ‘Willy Wonka’ and ‘Young Frankenstein’. The New York Times. Retrieved from: http://www.nytimes.com/2016/08/30/movies/gene-wilder-dead.html?_r=0
Lombardi, K. (2014). Seth Rogen pleads with Congress over Alzheimer’s, slams low-Senator turnout.
CBS News Online. Retrieved from: http://www.cbsnews.com/news/seth-rogen-pleads-congress-over-alzheimers-slams-low-senator-turnout/
Martinelli, M. (2016). Gene Wilder kept his Alzheimer’s secret so kids wouldn’t know that Willy Wonka was sick. Slate. Retrieved from: http://www.slate.com/blogs/browbeat/2016/08/30/ gene_wilder_ s_family_issues_a_statement_on_his_alzheimer_s_and_circumstances.html
Matthes, J. (2015). Observing the “spiral” in the spiral of silence. International Journal of Public Opinion Research, 27, 155-176.
Natale, R. (2016). Gene Wilder, ‘Willy Wonka’ star and comedic icon, dies at 83. Variety. Retrieved from: http://variety.com/2016/film/news/gene-wilder-dead-dies-willie-wonka-young-frankenstein-1201846745/
Noelle-Neumann, E. (1974). The spiral of silence: A theory of public opinion. Journal of Communication, 24, 43–51.
Noelle-Neumann, E. (1993). The spiral of silence: Public opinion—our social skin (2nd ed.). Chicago: University of Chicago Press.
Piver, L. C., Nubukpo, P., Faure, A. Dumoitier, N., Couratier, P., & Clement, J.P. (2013). Describing perceived stigma against Alzheimer’s disease in a general population in France: The STIG-MA survey. International Journal of Geriatric Psychology, 28, 933-938.
Werner, P., & Heinik, J. (2008). Stigma by association and Alzheimer’s disease. Aging & Mental Health, 12(1), 92-99. Doi: 10.1080/13607860701616325
Appendix A
It is with indescribable sadness and blues, but with spiritual gratitude for the life lived that I announce the passing of husband, parent, and universal artist Gene Wilder, at his home in Stamford, Connecticut. It is almost unbearable for us to contemplate our life without him. The cause was complications from Alzheimer’s disease with which he co-existed for the last three years. The choice to keep this private was his choice, in talking with us and making a decision as a family. 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. It took enough, but not that. 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…. (Jordan Walker-Pearlman as cited by Martinelli, 2016)