What stories can a photography workshop tell us?

Recent times have brought us a global pandemic and political, societal and cultural movements. What might feel like a time of turbulence and change has also revealed itself as a time of creativity and opportunities to pause and rethink from new perspectives. Against that backdrop, I would like to share my experience of working with artist, gallery and a paediatric medical team to offer a culturally acceptable therapeutic space for young people living and growing up with a HIV diagnosis.

This project focused on engaging young people in reflections on self and identity in the context of having grown up facing multiple levels of stigma and discrimination related to their health, ethnicity and social identities.  

Setting the scene

This project was developed in the context of an NHS paediatric and young person HIV clinic, which offered multidisciplinary care for children born with HIV, and their families. These families were predominately of black African or mixed black heritage (over 95 per cent). As a clinical team we had long heard stories of families experiencing multiple levels of discrimination related to their ethnicity, migrant identity, and health and learning abilities. The stigmatised HIV diagnosis label was often held in a societal and family discourse of 'never tell the HIV secret'. For many of the young people in our services, this had meant growing up having never said 'HIV' aloud. Family centred care, and integrated psychology and specialist nursing support in HIV services has focused on enabling children and families to gain positive narratives around HIV and taking treatment. 

The young people using our clinic had told us that meeting others with the same diagnosis had helped in de-stigmatising HIV. However, many families told us they were too fearful of their diagnosis being known to join. In response, we introduced our own therapeutic groups that offered a peer support opportunity for children and young people. 

Based on the Looking Forward Day (LFD) (Campbell et al., 2010), this group took place outside the hospital but hosted by the clinic team. It allowed those families who would not ordinarily attend groups to join in a 'safe space'. The program was deemed a success, and we were able develop the program to focus on opportunities for the young people to co-facilitate. This included young people with HIV diagnosis facilitating 'rap and spoken word' and physical strength workshops, making presentations and providing peer support roles. Others participated in a focus group that included an opportunity for the young people to work with graphic designers to develop an illustration to brand the LFD. 

Psychology as culturally and health relevant

As clinicians we often reflected on how our services and partner organisations could inadvertently reinforce these 'secrecy and stigma' hidden stories, in the lengths we would go to 'protect' confidentiality for the children and families using our services. We were also aware of the NHS context of our service, and the cultural relevance of this to young people and families. 

Any NHS service, however culturally sensitive and responsive, will at some point defer to a restitution narrative as the premise of care:

The restitution narrative is perhaps the most preferred illness story form in Western cultures, and thus perhaps the easiest of the three types to listen to well, if not deeply. In the restitution illness narrative, the person tells about the details of the illness from the perspective of the diagnosis and treatment: all that has been done, is being done, and will be done if treatment fails. It is a story in which modern medicine is the subject and the star, the ill person merely the habitus on which the practice of providers is inscribed (Weingarten, 2001)

The fact was, we as the clinical team could also identify opportunities to promote and elevate the young people's alternative stories alongside the restitution and family stories of health and HIV. Our challenge was to bring this into different formats where young people were enabled to explore, communicate and witness those stories in the company of others. 

One forum to do this was in the context of the arts and creative expression, not relying on words alone. We drew on inspiration from narrative therapy approaches such as 'world in a suitcase' (Clacherty, 2006) and the 'Tree of life' (Ncube, 2006) to allow a safe space for young people to develop and share their independent stories of growing up with HIV. This offered opportunities to acknowledge stories of growing up within the interdependence of family and health service HIV stories, whilst also holding a unique 'independent' story from those around them. 

The crucial setting…

Our priority was to provide a culturally relevant and safe space for young people that could enable them to share and witness their HIV stories free from stigma and potential dominant health, societal and family narratives. The venue and collaborative partners were key to achieving this. With the help of our arts charity we identified as a partner a gallery that was formed as an advocate for black art photography, and as a facilitator a female Eritrean photography artist, Aida Silvestri. 

The focus of the workshop we developed was portrait photography to represent individual stories of strength and resilience to counter the 'illness story'. It was a look to the future, with an emphasis on the often-neglected stories of skills, hopes and dreams.

We sought to invite young people preparing for or recently transitioned from paediatric to young person clinics. The invitation did not set an expectation to talk about HIV, but instead focused on photography workshop and self-portraits to tell past, present and future. 

The two-day workshop started with the artist leading an exploration of use of photographs to tell a story, with an opportunity for the group to share their own and reflect on hearing other's stories. One participant described it as 

'nice to do something different, something more creative where I can like share or like use photography or something to portray like my experiences growing up with the virus and stuff'.

The young people were in control of the process, supported by gallery and artist for creative direction. The young people were invited to play with the materials and share ideas and stories during the process. We came together as a whole group at the end of each day to review and jointly support individuals to make a selection of their final three images.

Eight young people joined, six were of Black African heritage, with one of mixed black heritage and one from a mixed north Asian heritage. Half had never accessed HIV peer support groups previously and three of the eight had an additional diagnosed disability (diplegia, global learning disability or visual impairment).

The experience of workshop was captured through post-workshop interview.  

'it was eye opening… I have never been to a group with, where I can openly talk about it, this is my first workshop actually … it is good to get out whatever you are feeling, and any concerns you have.'

'I took away acceptance. So not just accepting other people but also like accepting myself as a person and essentially, I guess, having an understanding that HIV is not like, it's not an identity, if that makes sense – it's not… it doesn't make up who you are as a person.' 

Witnessing through exhibition

Many of the participants referred to the significance of sharing experiences of having a HIV diagnosis in relation to their identity growing up. Creating a safe and culturally relevant context to have these discussions, and the activity of completing a photography-based project that would be publicly displayed, appeared to be significant. For some this was their first experience of talking about their HIV diagnosis. For many the workshop experience gave them an opportunity to make friends, and for the majority the experience facilitated a greater confidence in talking about HIV and a positive outlook for their future. 

'I think I feel more confident in what I have [HIV] because I know that you know I'm not alone and I am still healthy you know I have, I am grateful for the medication I have and you know it could be a lot worse and it's not and I think it made me realise that you know, it doesn't have to be something so bad, you know like people might talk about it as something really bad and in a disgusting way, you know but we have all come together, you know we all shared what we feel and how we feel about it [HIV] and I think it's just a god way to open up really'.

All the young people decided to include their portraits in a public gallery exhibition event. This allowed an opportunity for the young people to reconnect and share their experience with their family and medical team. This exhibition became a critical part of the therapeutic process, as a way to integrate the young people's stories with outsider witnesses and encourage them to be proud of their past, present and future cultural and illness stories (Clacherty, 2006). 

The young people later decided to donate their portraits for permanent exhibition in the clinic waiting areas.

Trying something new

Collaborating with the arts partners highlighted to me the value in holding a psychological position whilst also looking outside the psychology and health service frameworks. The inspiration for doing so came from the multi-disciplinary team, the young people and our arts charity. I am certain that this workshop would not have been possible without the clinic team, our patients and our partner's total commitment and good faith in letting us try something new. 

-       Dr Anita Freeman is a Clinical Psychologist with Great Ormond Street Hospital for Children NHS Trust London [email protected]

'I would like to share thanks and give equal credit to all involved in the project: the young people, Kate Plydell from Imperial Health Charity, the HIV clinical nurse specialist; Paula Seerey, Natalie Kirkhope, and Sophie Raghunanan, Ali Eisa, from ABP Autography gallery and artist, Aida Silvestri.' 

Photo above: 'Behind us'

References

Campbell, T., Beer, H. & Wilkins, R. (2010). The Lookig forward day: an evaluation of group work with HIV+ young people in london. Clinical Psychology Forum, 205, 28-32

Clacherty, G. (2006). The world in a suitcase: Psychosocial support using artwork with refugee children in South Africa. Participatory Learning and Action, 54, 121–127.

Ncube, N. (2006). The tree of life project: Using narrative ideas in work with vulnerable children in Southern Africa. International Journal of Narrative Therapy and Community Work, 1, 3–16.

Weingarten, K (2001) Making sense of illness narratives: Braiding theory, practice and the embodied life 'is published in the book. Dulwich Centre Publications.