This article draws attention to the fact that documentaries do not simply reproduce the reality that film and audience share but always present a particular view of this reality. This implies that organizations in Alzheimer care, education, and research that often recommend documentaries to inform people about dementia should take into account that these films might reinforce negative stereotypes inducing fear of dementia. An in-depth analysis of the Dutch short documentary Mum (2009), directed by feminist artist Adelheid Roosen, illustrates that the reasoning of the personhood movement in dementia research can be translated into an artistic form. By highlighting instead of veiling its means of production, Mum stimulates viewers to imagine people with dementia as other than lost selves.
Personhood in dementia, Performative documentary, Semiotic subject, Semiotics of poetry
Alzheimer’s advocacy organizations (e.g., Alzheimer’s Association, 2011), Alzheimer cafés (i.e., informal gatherings where people with dementia and their caretakers exchange experiences), and training programs in health care recommend, show, and discuss documentaries to inform people about dementia. Very little attention, however, is paid to the way that documentaries do not simply reproduce the reality that film and audience share but always present a particular view of this reality (Nichols, 2001). Consequently, they run the risk of—unintentionally—reinforcing negative stereotypes that induce fear of dementia (Basting, 2009). Alzheimer Nederland (2011), for instance, participated in the production and promotion of Verdwaald in het geheugenpaleis [Lost Down Memory Lane] (Van Es, 2010), advertised as the first documentary about Alzheimer’s that makes the perspective of its sufferers prevail. On the face of it, the film has the residents of Iduna—a Flemish protected living environment for eight people with early stages of dementia—tell and show what it means to lose one’s memory, as if the camera were not present. Yet, director Van Es elicited testimonies from the residents by off-camera interviewing and edited her material in such a way that the end result is a particularly tragic story. The documentary emphasizes that the residents dread the forced move to a large-scale facility if they perform poorly at the Mini Mental State Examination, and practically ends with them discussing euthanasia. Alternatively, Van Es could have focused more on the meaningful relations and sense of solidarity between the residents.
Wulff (2008) goes so far as to claim that documentaries about dementia make use of the same narrative strategies as mainstream dementia films, for example, Iris (Eyre, 2001) and The Notebook (Cassavetes, 2004; cf. Basting, 2009; Chivers, 2011). These films typically render the story of a disease in progress that reaches its nadir in the time span of the narrative and use metaphors, such as darkness, to add to the story of decline. Their overall atmosphere is nostalgia for an idealized past. The perspective of the caretaker is often predominant in the sense that he or she speaks for the beloved one—often an exceptionally gifted person, so that the impact of the disease seems especially cruel. Consequently, the tone of dementia films is melodramatic in order to raise compassion in the viewer. This article then aims to draw attention to the fact that documentaries always present some interpretation of what it means to live with dementia by offering an in-depth analysis of the Dutch short documentary Mam [Mum], directed by Roosen (2009). The film features the director’s mother who is diagnosed with Alzheimer’s disease but does so in a way that greatly differs from other dementia films. None of the characteristics listed by Wulff and others apply to Mum, which makes it especially relevant to analyze. Mum highlights the here and now of the story world; from the past of the person with dementia only her role as a mother is disclosed. The documentary does not exactly tell a story but rather gives an impression of some interactions between Roosen’s mother and her relatives in particularly staged scenes.
Ethics and Documentary
Roosen’s film travelled from one international film festival to another, where it received much praise (Female Economy, 2011) but was also widely distributed in the Netherlands itself. For instance, Mum made a tour around film houses as part of The Winter of Your Life, a program consisting of six Dutch documentaries about aging. In October 2010, the author of this article organized a panel consisting of care workers and scholars in health, ethics, and society at Cinema Lumière Maastricht to shed light on the films of The Winter of Your Life in dialogue with a diverse audience. Of all documentaries shown, Mum provoked the most discussion; especially the explicit images of the vulnerability of Roosen’s mother were reportedly hard to watch. Similar concerns were voiced in television and radio shows where Roosen repeatedly had to defend the intentions behind her film. In addition, the Internet served as platform for the exchange of viewer reactions. The blogger Van Trigt (2009), for instance, claimed that Roosen, whose task it is to take care of and protect her mother, abuses her instead for art’s sake. She wondered whether the mother, if she had been in full possession of her faculties, would have consented to being filmed wearing an incontinency nappy and talking gibberish.
Objections of the kind are somewhat understandable. Because documentaries portray social actors (people like we) instead of theatrical performers, they inevitably raise the ethical question what obligation documentarians have to their subjects (Nichols, 2001). The fact that Roosen’s mother is no longer capable of giving her consent makes this question seemingly all the more justified. Audience members protesting against the film hold on to the neuropsychiatric explanatory model for Alzheimer’s disease and related dementia that ascribes cognitive symptoms (e.g., memory loss), behavioral and psychotic signs (e.g., wandering and delusions, respectively) to neurological impairment (Downs, Clare, & Mackenzie, 2006). This model is found to imply the dissolution of the self, as in a “hypercognitive” world (Post, 1995), cognitive and intellectual capabilities are uniquely equated with the mind. Because they believe the mother has disappeared, some viewers feel compelled to speak for her. At the same time, they want to safeguard an aesthetics of personhood, which assumes dignity to be linked with a subject that can sit straight, does not wet herself and speaks coherently. Would it have made a difference if the mother of Roosen had been well enough to give informed consent? Is it possible to develop a set of guidelines for the visual representation of people with dementia? Nichols (2001) proposes to move beyond these questions—and the endless discussions resulting from it—and to look instead into the threefold interaction between the filmmaker, the subject, and the audience.
Similar to Deborah Hoffman’s (1994) Oscar-nominated Complaints of a Dutiful Daughter (Maierhofer, 2010), Mum is based on Roosen’s subjective view of her mother’s dementia. Alzheimer’s disease offers the director the opportunity to come to terms with the strained relationship she used to have with her mother and to tune into her world and language (Den Hollander, 2009). As Roosen, a vigilant feminist artist, is convinced that the personhood of her mother is showing rather than disappearing, she intended to make a documentary that would foster some sort of identity politics of Alzheimer’s. This objective resonates with the so-called personhood movement in dementia research (Leibing, 2006), which reclaims the self in dementia by redefining what personhood is and what meaningful relations are like.
Whereas Hoffman used the “participatory” documentary mode (i.e., when the interaction between filmmaker and subject is predominant) and combined the narrative with shots of family pictures and home movies to portray her development as her mother’s caretaker (O’Malley, 1995), Roosen opted for the “performative” mode (Nichols, 2001). Although the average documentary viewer might not be aware of it, performative qualities, such as elements of acting and dramatization, have always played a role in the making of documentaries. Only recently, however, they have started to serve the organization of complete films. Rather than explaining or making an argument about the factual world that film and audience share, the performative documentary addresses the viewer emotionally. It evokes a sense of subjectivity that is both personal and social by rendering the under- and misrepresented, like people with dementia, visible in unexpected ways. By highlighting rather than veiling its means of production, the performative documentary works against a straightforward identification with its main character and a simple response to its subject matter.
This brings out the role of the viewer. The hypothesis of this text is that through Roosen’s artistic reenactment of how she experienced her mother’s disease, the viewer might get a better understanding of people with dementia other than that they are lost selves as would be the case with a more conventional documentary (cf. Lost Down Memory Lane) that seemingly offers a transparent access to the reality of Alzheimer’s. The subject of analysis in the next paragraphs will, therefore, be the reality of the performative documentary—a reality that in itself can be profoundly ethical by generating responses in the viewer that might challenge negative presuppositions with regard to dementia. A such, the analysis of Mum follows on Waxman’s (2010) plea for a literary gerontology that focuses on the text’s reflection of and influence on the world in which it is produced by means of reader-response criticism. To make clear that the real cannot be represented transparently throughout the text, Mum refers to the film title, “mum” to the on-screen persona of Roosen’s mother, and “Roosen’s mother” to the actual historical person who is directly related to the on-screen persona and remains anonymous.
Mum’s Resemblance With a Play
Mum can be characterized as a play recorded on film. The documentary consists of eight scenes varying in nature and setting. Every scene consists of a single shot of approximately two and a half minutes. Six scenes are shot frontally at eye level. As a result, the viewer never looks down or up to the main character, with the exception of two shots in which mum lies on the floor that are taken from a bird’s eye view perspective. In addition, the subjects in motion are observed from a fixed point of view and presented in medium long shots. Hence, the camera position and field size of the images enhance the impression of being in a theatre. The transition between the shots is not smooth. Even though the images dissolve gradually, the insertion of blank screens and intertitles prevent the spectator from being immersed in the film. The intertitles take the form of inserted announcements about the characters in the two shots that follow, viz. mum with her youngest sister, mum with her son-in-law, mum with her elder daughter, and mum with her younger daughter.
Shortly after Mum was released, the director Boonstra (2010) incorporated Mum in a new documentary film, entitled Niemandsland [No Man’s Land], which was broadcasted on national TV in order to clarify the drift of Roosen’s argumentation. No Man’s Land starts with the director Roosen walking into her mother’s room in the home Czaar Peter Punt and explaining that she will go upstairs to discuss Mum and raise awareness for people with dementia. No Man’s Land makes it possible to compare the images of mum’s room in this documentary about Mum with the setting of Mum itself. Roosen has substituted what the viewer believes to be a realistic picture of a room in a home for the elderly—including the dated furniture and the pictures representing mum’s life—by a visualization of her mother’s rather surrealistic mental images. Consequently, the viewer is not encouraged to turn to the past to find meaning in the narrative but to focus on the here and now of the minimalist and artificial scenes. In scenes one and six, mum and her youngest sister sit in front of a Plexiglas divider that they are writing and painting on. In the second and fifth scenes, mum is lying on her son-in-law’s lap. They are both sitting on a bed that is positioned against a bright blue wall. In scenes three and eight, the elder daughter cuddles mum in an industrial-looking bathtub behind, which are aluminum foil curtains (Figure 1). In the scenes with the younger daughter, mum is stretched out on a deep red carpet.
What are the consequences of this displacement of setting? In nursing homes “the body is taken to be a […] telling surface for looming deterioration” (Gubrium & Holstein, 1999, p. 523). Yet, Alzheimer’s cannot automatically be inferred from bodily markers. When making a film, this implies that the director has to rely on a series of events inducing behavior that prompt the audience to come up with a medical diagnosis. Roosen’s film, though, contains very few events. The director reduced the narrative to its bare essentials and shifted from the conventional portrayal of the person with Alzheimer’s—confused and helpless but not visually threatening—to ignoring the taboo on the depiction of the frail body. As a result, this body has been turned into a discursive project: one of the most discussed topics of the film is the hypervisibility of mum only wearing support stockings and underwear revealing incontinency napkins.
At the same time, Roosen’s body drama, that is, the exposure of the locus where birth and death meet (Bakhtin, 1984), is strongly aestheticized. There are no naturalistic images of care routines like mum taking a shower or relieving herself. Furthermore, mum’s minimal garb consists partly of a bra made of black lace. Her face is made up and her hands are manicured. Evidently, it is not possible to deduce from the film’s images whether Roosen’s mother insists on wearing these garments and make-up. Hence, it is hard to decide whether they discipline her body or support her personhood (Twigg, 2010). Still, in combination with the particular setting, the revealing images of mum contain a sense of beauty.
Ending and Closure
Mum’s sense of reality is heightened by a selection of apparently directly recorded background noises, such as a phone ringing and footsteps, which smoothen the transition of scenes. Conversely, the seemingly last scene with mum and her elder daughter sitting together in the bathtub coincides with a sound rupture, as the mambo song “Sway” (Beltrán Ruiz, 1953) drowns the resonance of water drops. This sound cut is an example of filmic excess. Because the volume of the music is significantly louder than the preceding speech and background sounds of the auditive track, it draws attention to the boundaries of the film’s story world. It is not clear whether or not the music can be heard by the characters in the scene because it is not possible to trace the source of the song.
Although the scene seems at first alienating, there is a connection between the song and the film event. In the initial scene in the tub, we hear mum comparing the bath water with the coast: “It’s beautiful, darling … This coast … I find so lovely.” This reference to the sea recurs in the refrain of “Sway” that goes with the second scene in the tub: “When marimba rhythms start to play/Dance with me, make me sway/Like a lazy ocean hugs the shore/Hold me close, sway me more.” The text of the song is narrated in the first person. Because of the resemblance between mum’s comparison (of bath water with the “coast”) and the comparison of the song’s narrator (of swaying with “a lazy ocean hugging the shore”), the song might hint at mum’s musical taste. “Sway” could then be interpreted as completing mum’s voice that is silent in this particular film scene. Or, in line with the director’s intention behind the filmmaking, “Sway” could be the unexpected love song of the daughter to the mother with Alzheimer’s disease: “Other dancers may be on the floor/Dear, but my eyes will see only you/Only you have that magic technique/When we sway I go weak.” Moreover, the filmic excess could be read as an intimation to the viewer to consider positioning people with dementia as objects of admiration and desire instead of fear and disgust.
Even though the song “Sway” coincides with the last scene of Mum before the credit titles show, the documentary does not end with the sound rupture. The protagonist has literally and figuratively the last word in a shot inserted after what seems to be the story’s conclusion. Mum, wearing a dress with floral print, says goodbye to her son-in-law. She seems to have shared some pleasurable moments with him—similar to the ones we have witnessed in the film. She looks at her son-in-law, shakes his hand and gives him a friendly pat on the upper leg. Their dialogue goes as follows: “Thanks for the good decency, and eh, for the ease. Bye, bye.”/“Bye.”/“Thank very much.”/“Yes, s’all right.”/“I really liked it.”/“Yes, me too.”/“Bye.”/“Bye.” Because of the peculiar editing choice of this shot, a sense of closure is established. The idea behind this closure is the suggestion that mum is aware of the role that she is playing in the film and consequently, can put an end to her performance, express her gratitude to her fellow-actor, and eventually, will return to the routines of her everyday life. This contradicts the very idea that mum might be the only one of the film characters who is not consciously performing before the camera.
Characterization and Imitation
From the very beginning of the film, there is no reason to assume that mum’s family members—never referred to by their actual names, only by their social roles—conduct their lives in the same ways as they would without the camera’s presence. Two of the characters, viz. Roosen herself (as mum’s younger daughter), and her partner Titus Muizelaar (as mum’s son-in-law), are well-known theatrical performers in the Netherlands, which makes it even more difficult for Dutch viewers to equate their characters on screen with the people of the historical world they share. Like the setting, the actions in which the characters engage are profoundly staged.
Roosen’s on-screen persona wears like mum a black bra, support stockings and incontinency napkin, and mirrors her mother’s postures. On the one hand, this procedure has a leveling effect: There seems to be no difference between the caretaker and the patient. Especially the first scene portrays a symbiosis between mother and daughter who, fetus-like, lay on the red carpet (Figure 2). The dichotomy between the person who is ill and the person who is not is deconstructed. On the other hand, the unveiling of the older frailer versus the younger fitter woman’s body does not make the same kind of spectacle. The viewer knows that Roosen plays a role: She is the director–performer embodying mum’s dementia. Undeniably, mum depends on her goodwill as caretaker and director, being unable to talk back as she might have done before she suffered from Alzheimer’s disease. Consequently, the picture of sameness is impossible to hold on to, as is demonstrated in the second scene. Mum is in pain and moves on the red carpet in such a way that her head is outside the frame. The daughter enters the frame crawling towards the mother to bring her back in sight and console her.
The play with imitation is not limited to the performance of Roosen. In the two scenes of Mum in which the protagonist interacts with her son-in-law, the positioning of the family members echoes Roman Catholic Madonna and Child iconography (Verdon, 2005). In the first scene, the son-in-law cradles mum between his legs while being seated on the mattress of an institutional bed. Mum talks endlessly, inspects his feet and compares them with hers. Devotedly, the son-in-law listens to mum’s speech while smiling gently and cautiously touching her shoulders, arms and legs. Instead of the Virgin Mary holding her son, the son now holds the mother-in-law and tries to comfort her. In the second scene (Figure 3), the son-in-law holds mum in his arms, fully supporting her body in such a way that the posture seems to reverse the common representation of a grieving Virgin Mary cradling the body of Jesus. Yet, the person with Alzheimer’s is not pictured as a living dead (Behuniak, 2010) because mum nourishes the son-in-law with chocolate, thereby continuing her role as nurturer. Hence, care giving is represented as a reciprocal partnership in which both stakeholders give and receive. It is even a source of pleasure and fun: the two characters crack up when they discover that the chocolates are filled with liqueur.
Opting for a reference to Madonna and Child positioning in the scenes with mum’s son-in-law compares the person with Alzheimer’s indirectly to a child. The theme of regression recurs as well in the explicitly showing of mum in incontinency napkin and fetus position. Although widespread, this comparison between the helplessness of a person with Alzheimer’s and a newborn is questionable because it hints at a backwards movement to earlier developmental stages, with no recognition of the lifetime of experience that separates older people from children (Cayton, 2006). In suggesting that people with dementia return to an infant-like state, one runs the risk of denying them personhood and organizing care based on a deficit approach. This does not seem to be the case in Mum. Most of the images of dependency and frailty are far from gloomy and express a physical closeness that leaves room for mum’s agency. Moreover, mum’s family members fully engage in the contact that she is still able to establish and never reciprocate her speech with baby talk.
Mum as Semiotic Subject
The fact that the documentary accentuates the exposing of mum’s vulnerable body does not imply the dismissal of her voice. Mum rehabilitates the person with dementia as narrator on its auditive track. Given that people in the severe stages of Alzheimer’s have difficulties to express themselves verbally, it is remarkable that the film relies on the most conventional way of performing subjectivity, that is, the ability to index via first person pronouns (Hartung, 2009; Sabat, 2001). Mum’s fragments of speech (as well as the speech of the other characters) are put in sentences, punctuation inclusively, and represented as text on screen. The subtitles invite the viewer to read her lines carefully, as the other film characters demonstrate exemplarily. Mum’s family listens warily without interrupting, ignoring or correcting her unintelligible tongue that turns out to make sense in the discursive context in which it is produced.
Sabat (2001) states that approaching Alzheimer’s patients as semiotic subjects, based on the willingness to interpret their speech acts as meaningful, can result in successful communication. By semiotic subjects he means “individuals who can act intentionally given their interpretations of the circumstances in which they find themselves; they are people who can evaluate their own behavior and the behavior of others in accordance with socially agreed-upon standards of propriety and reason” (p. 171). In Sabat’s opinion, people with Alzheimer’s disease have the capacities to act semiotically but are often not able to realize it in speech and action. Therefore, he proposes to go beyond speech and take the context and body language of every utterance into account.
Sabat’s theory can be extended to the performance of Roosen’s mother in Mum. The first scene in which a dialogue between mum and her sister unfolds serves to explain that mum is still able to display behavior driven by the meaning that a given situation holds for her:
Doesn’t work … Look, there’s some sort of luxury-like … He has laved out beautifully but it’s … it’s … it’s … then you … mix everything … if you want … because I can’t yet … not yet can … would you? Marked on blush here, right.
You’ve got a good brush. Look, nice brush.
This one too maybe. I just can’t do it alone … I can … just fumble-dump in the milk for a … for you … then ask this gentleman or that lady … do you want it like this and this and this … for then it makes sense … but this one I can’t anymore … can’t anymore …
Oh, but it is nice if you go all around my poem.
No, I am already broken with it.” “Go ahead.” “I’ve just on the loot … Was not nice then either.
Only when linking these lines with the images of the scene, does it become clear what mum tries to communicate.
Mum finds herself in a setting that stimulates her to write on the Plexiglas divider in front of her, just like her sister does (Figure 4). She is aware of what is expected of her. Her lines are semantically clustered around “I can’t,” which is repeated several times with similar words such as “not yet can,” and connected to the first-person pronoun I. They all refer to mum’s acknowledgement of her inability to write even though she intends to do so. The first obstacle mum is confronted with is the removing of the cap of one of the chalk pens that lay before her. She does not find the proper word to refer to the pen and calls it “some sort of luxury-like.” This becomes clear through her actions: she points at the chalk pen on the table, picks it up and starts shaking (“mixing”) it. Then she catches sight of the brush and tries to open it like the marker. Meanwhile white paint covers her hands. Through her speech act, mum not only expresses her inability to write, she also articulates her frustration over the loss that she is confronted with and asks for help. Mum addresses her sister by looking at and talking to her while turning her body towards her. The last line of the dialogue makes clear that mum’s feeling of impotence is recurrent. In another context the same day (“on the loot”), she already had a bad time (“not nice”) because of her failure to perform everyday actions.
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