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power relations

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.


From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.


Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’


Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.


However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).


During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.


There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.


This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.


Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.


  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information:


Dr Hannah Zeilig

University of the Arts, London




The Wolf of Dallas: Money, Stigma and HIV – Guest Review by Shehzad Kunwar

14 Feb, 14 | by BMJ

A Review of “Dallas Buyers Club” (USA 2013, directed by Jean-Marc Vallee). Released in the UK on Friday 7th February 2014



Say hello to Ron Woodroof, a ‘typical’ Texan. He loves the rodeo. He wears a white t-shirt, boots, a large belt buckle and, of course, a classic Stetson hat. He is a heterosexual aggressive man who loves drinking, drugs, gambling and women. Not the ‘typical’ person you envisage when you think someone with HIV/AIDS living in the 1980s. But after Ron is diagnosed with “HIV”, he becomes an “overnight champion” for human rights; in particular for the rights of those living with HIV to access unlicensed treatments. In an era where discrimination towards those living with HIV was rife, he is soon shunned by his friends and colleagues, gets evicted from his trailer and ends up in an apartment with a pre-op transsexual. His newest “enterprise” is selling FDA unapproved antiretroviral drugs to fellow end-of-lifers.


While acting in his new role pharmaceutical “drug dealer” Woodroof, played by Matthew McConaughey, discovers facts that elude health professionals: such as the significance of patients’ concerns and the value of achieving peace, rather than than prolonging life at all cost.


Based on the 1992, ‘Dallas Morning News’ article written by Bill Minutaglio, the script underwent multiple re-writes before funding was secured. With many actors competing for the role, it was McConaughey, who Woodroof’s sister said shared the same swagger and personality as her brother, who eventually secured the role.


Armed with a passport, and a strong sense of enterprise, Woodroof travels around the globe acquiring illegal drugs such as alpha-interferon. Ron creates his own pseudo-Big Pharma company in the form of a “Dallas Buyers Club” selling prescription-only drugs deemed illegal by the FDA


Moral ambiguity imbues the film, with the question of ethics as a recurrent theme. For example, in the representation of research, Woodroof and Big Pharma run clinical trials in parallel.  The numerous attempts made at shutting down Woodroof’s enterprise by the hospital and Internal Revenue Service, who he tries to bribe to keep his business going, is echoed by the pharmaceutical companies subsidizing the hospitals running the antiretroviral trials on their behalf.


Homophobia and ostracizing those who were ‘different’ are evident throughout the film. Director Jean-Marc Velee’s perspective of the deliberate targeting of HIV community groups, amongst the gay scene by Woodroof in selling his drugs, is paralleled by the pharmaceutical companies going straight to human trials of AZT, further exploiting and preying on the “desperate and dying”.


The character of Eve, played by Jennifer Garner, represents ethical medicine. She questions the pharmaceutical companies’ intentions in persevering with the clinical trials once the significant side effects of antiretroviral drugs became apparent. Her character also highlights the hierarchy that exists in medicine, then and now. As the film progresses, Eve’s voice as the younger, more empathetic doctor contrasts that of her boss Dr. Sevard. His desire to continue with the trial is directly juxtaposed with her disenfranchisement with it and continuing support for Woodroof’s work.


Much hype has surrounded Matthew McConaughey’s weight loss, but that is a small part of his meticulously researched performance. The subtleties and nuances of both his voice and expressions portraying a multi-dimensional figure earned him a well-deserved Oscar nomination.


In some aspects it seems that the film is made for the undiscerning viewer, in its stereotypes of corporate America and each characters role displayed clearly in their costume. As another variation of the classic David and Goliath story, nothing is ambiguous here and with the constant voice-overs, there is no doubting the identity of the protagonist. Velee’s perspective is that there is a direct comparison between Woodroof and Big Pharma, with Woodroof’s success in that battle epitomised in his prolonged life beyond the 30 days he was given by the medical profession.


This film is a timely way to revisit the HIV/AIDS crisis and continues the work of titles such as “Philadelphia” and “Angels in America”. But unlike Denzel Washington’s character, in Philadelphia, Woodroof’s personal change is guided by greed rather than compassion. Vellee, ensuring that the film’s take-home message is heard loud and clear, amplifies this journey for the mainstream viewer.


Dr Shehzad Kunwar (independent film maker, photographer and musician):

James Poskett: What to do with patients’ stories?

26 Dec, 11 | by James Poskett

Narrative is a hot topic in the medical humanities. It can also be bewildering. Over the years literary theory has helped to bring the relevance of patient’s stories to the forefront of medical practice. But, as Johanna Shapiro notes in her recent paper Illness narratives, critical approaches to such stories have also complicated the practical matter of listening and talking to patients. more…

Khalid Ali: Film Review: Asmaa: Directed by Amr Salama: Star rating ****

3 Nov, 11 | by Deborah Kirklin

With annual World AIDS Day taking place 1 December, this new Egyptian film, which was shown at the recent London Film Festival, is very topical.

The subject of HIV in European and American cinema has of course been explored in many films (such as “Savage nights” (1992), “Philadelphia” (1993), “The Hours” (2002), and “Angels in America” (2003)). However depictions of HIV positive characters in Arab cinema have been scarce, characteristically portraying HIV patients as promiscuous sinners who deserve to be ill, or else as victims of an American conspiracy to spread HIV infection amongst young people in the Arab world. more…

“A supremely worthwhile, if sometimes unbearably demanding job”: Ray Tallis on doctoring

10 Aug, 10 | by Deborah Kirklin

I’d hazard a guess that no matter how much editors like to think that readers enjoy having their ideas and prejudices challenged, theres nothing in practice that the average reader likes better than an opinion that chimes neatly with their own. Which, I’ve no doubt, is why I enjoyed reading Ray Tallis’s article in yesterday’s Times newspaper as much as I did. An erudite and amusing thinker, Ray Tallis writes about the impact of the European Working Time Directive (EWTD) on surgeons and on hospital doctors in general. In describing the unintended but, sadly, highly predictable consequences of the  EWTD on continuity of care, levels of provision, and training and mentoring opportunities, he argues that doctors are in danger of being  “reduced to cogs in a standardised service and discouraged from giving full expression to a commitment to patients for whom they feel personally responsible.” more…

Vitamin D, a Public Health Issue: listen again with the BBCiPlayer to learn more

6 Aug, 10 | by Deborah Kirklin

I’ve got a confession: I, and indeed a significant number of my fellow GPs, have got an unhealthy obsession with vitamin D. Or, to be more precise, vitamin D deficiency and the apparent inability of the NHS to make available to me, as a prescriber, the means to treat it in my patients. You see we can’t, quite literally, get the fix they need, at least not using our tried and trusted prescribing pad. more…

Clinical Ethics Conference: London 8-9th July 2010

13 Jun, 10 | by Deborah Kirklin

On the 8th and 9th of July 2010 the Faculty of Health and Social Care at London South Bank University will be hosting a pioneering conference focusing on Best Practices in Clinical Ethics Consultation and Decision Making. For the first time in the UK, this conference will bring together an international and inter-professional dialogue between different stakeholders with the aim of fostering and developing best practice in clinical ethics consultation and decision-making across all sectors of healthcare. more…

District 9 and Man’s Inhumanity to Man: a filmic guide to dehumanisation

28 Sep, 09 | by Deborah Kirklin

I am fortunate enough to count Professor Jonathan Glover, a world renowned medical ethicist, amongst my former teachers. A very modest and thoughtful man, Jonathan Glover spent a number of years writing a similarly thoughtful book in which he tries to understand what he terms man’s inhumanity to man (Humanity: a Moral History of the Twentieth Century. Pimlico, London 2001). His starting premise is that, given the wrong circumstances, we are all capable of doing evil things to other human beings. At the heart of his efforts are a desire to understand, for all our sakes, what it  has taken in the past, and by extension what it would take in the future, for people- just like you and me- to be willing to take part in our own equivalent of the Holocaust and the Rwandan genocide.


What if you haven’t got a flu friend?

17 Jul, 09 | by Deborah Kirklin

There are always, within the population, individuals who have no one to collect medicines for them when they are ill. The group predominantly affected are the elderly but, especially in a situation in which a significant proportion of the population is affected by a flu pandemic, there will be others. In normal circumstances we have a tried and trusted system of asking local pharmacies to deliver medications, including emergency medications, to people’s homes. more…

Homelessness: what’s the right response?

13 Jul, 09 | by Deborah Kirklin

Over the weekend, mixed with the harrowing coverage of the loss of soldiers’ lives in Afghanistan, and for news cycle reasons I’ve inadequate information to understand, the fate of London’s homeless population prior to the 2012 Olympics was discussed on television and in print. The organising committee of the London Games had apparently committed itself to ensuring that no one would be sleeping rough on London’s streets by the time the world’s elite athletes arrived. The question of the weekend was whether this goal would be achieved and at what price, both economic and in terms of human dignity. more…

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