Visible and erased: the case of the ‘Alzheimer’s ballerina’

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What does the viral video of a former dancer with Alzheimer’s disease suggest about the dancer, about disease, about us?

Like! Share! Done! As the internet is being fully integrated into our lives, a technological tool which not only amplifies but also reconfigures many attributes of the public sphere, we have become accustomed to the viral effect and mass circulation of images and videos, along with the ethical complications our (sometimes automated) acts of sharing and republishing entail. A recent example, a video showing Marta González, a ballet dancer in the 1960s who suffered from Alzheimer’s and died in March 2020, flooded social media platforms and enthused thousands of users with her overwhelming ‘performance’ as her embodied memory of steps from Swan Lake awakens when she listens to Tchaikovsky’s score.

Despite the empowering message of the video – which underlined the beneficial use of arts in cases of Alzheimer’s and other dementias, offering insight into the patient’s experience and also causing our empathic engagement – it was exactly this mediated account of the patient’s story that caused some critique. According to standard guidelines by medical associations, when a patient lacks the mental capacity to consent to the possible uses of such material, whoever has the power to act on behalf of that individual has to exercise this power in the best interest of the patient. Although we do not have access to the background of the story, knowing if such guidelines were respected, nor to a consistent narrative of her life as many details proved falsified, there’s an unresolved ethical conflict at the heart of this case: is the medical gaze the only possible way to relate to that individual? Could her story be told without disregarding the ethical complications of allowing it to unrestrictedly circulate online?

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It may have helped to debunk the use of Alzheimer’s as a metaphor for the pathology of a body unable to access its own lived history

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This dilemma is not an excuse for either violating the patient’s privacy or breaching existing medical protocols designed to prevent the release of confidential, sensitive data. Although we may not agree with disclosing any of Marta González’s personal data – even if many cannot be verified (her age, for example), making her mysterious life sound like fiction – we can agree that her story emerged as a hinge between the layered experiences of Alzheimer’s disease and the dancing body, producing spontaneous responses and encouraging many other similar stories to be told. In some cases, it may have helped to debunk the use of Alzheimer’s as a metaphor for the pathology of a body unable to access its own lived history. But, most importantly, one might argue that this video refused to circumscribe Alzheimer’s as strictly medical territory by focusing further on the relation between visuality and embodiment – a nexus often neglected by medico-industrial practices.

In her story, loss and life meet, or to paraphrase Peggy Phelan, her perspective characterises (her) performance as a ‘rehearsal of loss’, honouring the very fragility of life, the caesura between letting go and regaining control. This contrast is visible in several cases during the clip: in the beginning, González moves her hand to request an increase of volume but then withdraws, seemingly unprepared for the transformative impact the music has on her. With the escalating force of the music, she opens her waving arms, like a fledgling ready to rise to the sky. Her expressions are dramatic, conveying her response to the score, her memories, her life in dance. Just as we recognise some signature gestures from the ballet, we also see her arms become a substitute for her legs, mirroring movements that otherwise would be performed on pointe shoes. Her dance is beyond a mimetic act based on the choreography; hers is a dance of embodiment accessed through the ‘lack’ of memory – a ‘syntax of loss’ that formulates her encounters with her past. Loss, here, becomes the uncovering of a ‘wound’, through which we witness the intensity of (her) living (with Alzheimer’s).

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Phrases such as ‘once a dancer, always a dancer’ fail to capture the complexity of her situation

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There’s a counter-narrative to all this that we should, clearly, investigate as well. The video is edited, probably by the association Música para Despertar (in a free translation ‘Music to awaken you’) who initially published it online. The extra, uncredited excerpts are from Ulyana Lopatkina in Fokine’s solo dance Dying Swan, which was set to music by Saint-Saëns. Though there is no direct correlation between the two dancers, the implication of these edits – that González might or should have looked like Lopatkina in the past, and that her movements suggest the elegance of a former prima ballerina – romanticises González’s story, excluding any kind of real-life suffering. If the video encourages a sense of ‘active sympathy’, defying what could otherwise be a vulgar act of voyeurism, the interpolated images of Lopatkina also displace González’s own history, denying her the right to own her experience, however fragmented that might have been.

This last detail, along with the doubts over the violation of medical protocols, attests to a common online ‘practice’, in which the other, or any representation of the other, is often deployed to suggest that arts and culture serve as a soft supplement for a more complex real-life situation. Phrases such as ‘once a dancer, always a dancer’ fail to capture the complexity of her situation, offering instead normative, stereotypical views of her life. But perhaps it is just those neglected nuances of her life and her experience of the disease that can help promote patient-centred approaches within healthcare through more critical, social and even mediated engagement. Despite all this, the video remains a good example to suggest a more affective way of knowing bodies, beyond the objectifying, sometimes cold medical gaze, and to surpass conflicting positions by bringing closer the binaries of knowing and feeling, understanding and empathising. 

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