Blog by Arlene Jackson
The family of actor Bruce Willis first shared his diagnosis of aphasia and frontotemporal degeneration (FTD) via social media in 2022, stating: “Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities. As a result of this and with much consideration Bruce is stepping away from the career that has meant so much to him.”1 Despite their assertion on Mr. Willis’s behalf that he has retired from the media’s gaze, the family continue to utilise social media to, “share updates and glimpses of the action star.”2 It is unclear whether Mr. Willis has given his consent for any of this publicity. Shouldn’t the chronicling of Willis’s illness on social media by third parties provoke ethical considerations? For example, relevant stakeholders, including the FTD community, have not discussed the issue from the perspective of informed consent. This absence should concern anyone who cares about patient rights.
In Coping with Illness Digitally, Stephen Rains offers seven potential benefits users may gain when employing social media as a mode of communication in response to illness: “anonymity, availability, control, diversity, documentation, reach and visibility.”3 If we consider Mr. Willis’s position by examining two of these benefits—anonymity and control—he has neither. First, as an internationally recognised actor, Mr. Willis relinquished his anonymity a long time ago. Second, control as a benefit relates to the sharing of information by an individual. Yet Mr. Willis is promoted through social media platforms curated both individually and collectively by his wife, Emma Heming Willis, his former wife, Demi Moore, and his three adult daughters.
The family members present themselves as enjoying a close bond with Mr. Willis, which may imply that they have secured his consent, perhaps nonverbally. However, when Heming Willis spoke of Willis’s condition on The Today Show in November 2023, she confirmed that it is “hard to know”4 if he has cognitive capacity. Earlier accounts of Mr. Willis’s cognitive decline, reported by his former colleagues as early as 2018, are less opaque. Director Jessie V. Johnston voiced concern for the actor’s welfare on set, recalling, “Willis questioned where he was: [saying] I know why you’re here, and I know why you’re here, but why am I here?”5
To date, the Willis family, mainstream media, and scholars in the field of neurodegenerative diseases have represented Mr. Willis’s exposure within the field of public health as an “opportunity for the public to learn more about what aphasia is, and—maybe even more importantly—what it isn’t.”6 However, it is again unclear if Mr. Willis has provided his informed consent to be the public face of FTD. Instead, the spotlight is given to his wife and daughters, who are praised as “courageous”7 for sharing the details of his diagnosis with the public.
Normalising a lack of explicit consent in this context carries implications, including the suppression of Mr. Willis’s first-person narrative. Videos and photographs posted to the Willis family’s individual accounts are accompanied by a commentary on how they feel about his condition. It could be argued that Willis’s family engages in a victim/caregiver dynamic. Sociology professor Arthur W. Frank writes about illness experience, narrative, and ethics of care, and he describes this relationship dynamic as “the dominant cultural conception of illness […] the ill person as ‘victim of’ disease and then recipient of care.”8 Heming Willis’s book documenting her experience as a caregiver may give support to this view.9 It may be further argued that there is a lack of dignity afforded to Mr Willis. After a video recorded on his sixty-eighth birthday was shared by Demi Moore on her Instagram page, her followers expressed concerns for Mr. Willis, questioning whether the family ought to have shared such images. Rather than examine such concerns, the media responded by facilitating sentimentalist ideas about illness and disability: “what they shared was not just a video, but it was an unforgettable moment, next to a person they admire, love, and care for.”10
For many people living with illness/disability, social media has proven empowering, connecting them with a wide audience to both offer and gain information and support. Nevertheless, as Professor of Practice in Global Data Analytics, Max Roser, writes, “Despite their brief history, computers and AI have fundamentally changed what we see, what we know, and what we do. Little is as important for the world’s future and our own lives as how this history continues.”11 His cautionary tone implies that regulation of the internet trails the technology’s development. Furthermore, where consent is ambiguous, public discourse and scholarship on the impact of an unregulated internet on individuals living with illness/disability remains scarce.
I invite further discussion of the issue presented here. The humanities aim to critically “analyse the drivers and implications of a changing world”12 and to do so through a consideration of our responsibilities to others and to the self. The management of Mr. Willis’s public profile by his family, particularly with reference to his illness, certainly provokes such reflection. In the meantime, we may suppose that his family is acting with intentions that are faithful to his desires. Nonetheless, in an age when the majority of the population carries an internet-enabled phone in their pocket and users of social media are invited to scroll through the personal lives of others, holding faith that people will aways behave in an ethical manner is insufficient. Rather, we should consider the impact of social media exposure on any individual who is unable to express consent due to impairment and who, like Mr. Willis, may be at risk of being cast into a role they cannot decline.
Arlene Jackson is a postgraduate researcher at Manchester Metropolitan University, where she explores the meaning and value of fiction in audio format for individuals living with sensory impairments. As a former nurse who presently lives with chronic illness, Arlene utilises her perspective from the other side of the medical fence to support subjective illness narratives. She may be contacted here and welcomes discussion on this issue via the comments feature available below.
References
[1] Demi G. Moore, (@demimoore), “To Bruce’s amazing supporters, as a family we wanted to share that our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia,” Instagram, March 30, 2022, https://www.instagram.com/p/Cbu-mD7LMPg/.
[2] Lara Spencer, “Bruce Willis’ Wife Opens Up About ‘Desperately’ Needing Support After His Dementia Diagnosis,” ABC News, May 8, 2024, https://abc11.com/post/bruce-willis-wife-opens-up-about-desperately-needing-support-after-dementia-diagnosis/14784503/.
[3] Stephen A. Rains, Coping with Illness Gigitally (MIT Press, 2018), 15.
[4] Martin Holmes, “Bruce Willis Update as Demi Moore Shares Touching New Photo,” TV Insider, March 20, 2024, https://www.tvinsider.com/1127550/bruce-willis-health-update-dementia-demi-moore-photo/
[5] Meg James and Amy Kaufman, “Concerns about Bruce Willis’ Declining Cognitive State Swirled Around Sets in Recent Years,” Los Angeles Times, March 30, 2022, https://www.latimes.com/entertainment-arts/movies/story/2022-03-30/bruce-willis-aphasia-memory-loss-cognitive-disorder.
[6] Robert S. Hurley et al., “The Media Coverage of Bruce Willis Reveals Unfamiliarity with Frontotemporal Degeneration,” Innovation in Aging 7, no. 9 (2023): igad125, https://doi.org/10.1093/geroni/igad125.
[7] Hurley et al., “The Media Coverage of Bruce Willis.”
[8] Arthur W. Frank, The Wounded Storyteller: Body, illness & Ethics, 2nd ed. (University of Chicago Press, 2013) 5.
[9] Sian Cain, “Bruce Willis’ Wife Writing Book About Being His Caregiver After Dementia Diagnosis,” The Guardian, February 5, 2024, https://www.theguardian.com/film/2024/feb/06/bruce-willis-wife-emma-heming-new-book-dementia-diagnosis-caregiving-release-information.
[10] Isabel Carrasco, “Bruce Willis Mocked on Social Media Proves People Can Be Truly Heartless,” Cultura Colectiva, March 21, 2023, https://culturacolectiva.com/en/lifestyle/bruce-willis-mocked-on-social/.
[11] Max Roser, “The Brief History of Artificial Intelligence: The World Has Changed Fast—What Might Be Next?” Our World in Data, December 6, 2022, https://ourworldindata.org/brief-history-of-ai.
[12] Qualified for the Future: Quantifying Demand for Arts, Humanities and Social Science Skills (British Academy, 2020), https://www.thebritishacademy.ac.uk/documents/1888/Qualified-for-the-Future-Quantifying-demand-for-arts-humanities-social-science-skills.pdf.