Ways of making: Artistic practice which works co-collaboratively,ethically and which celebrates and extends the conversation of what it means to live well with HIV

To the editor,

There is an urgent need for alternative means of thinking about and expressing what it means to live with HIV, especially for women who live well with HIV, a demographic often excluded or overlooked in most cultural and performative representations. I offer this letter in the spirit of openness and celebration to extend ways of working artistically in co-collaboration to understand women’s experiences of sexual health, but specifically the concept of living well with HIV.

Within the field of arts and health, there is an ongoing and long-standing commitment in terms of theatre-making around HIV, including health promotion, education, and protest and activism. While this initiative originally began in the form of AIDS awareness programming or as a medium of protest to call attention to the AIDS crisis, as can be seen in the award winning, performative work of the US-initiated, but now international, political group, AIDS Coalition to Unleash Power (ACT UP) (in the United States, ACT UP won a Bessie award ¹ (Solomon, p. 44)), there has been little recognition of the ongoing work, especially in community arts-based work.

There has been a call for a more subtle, more diverse, and more intimate response to what it feels like to live with HIV or any other sexually transmitted infection. Fundamentally, when HIV education and theatre started working together, it was a very blunt, moralistic response and now, happily, we have moved forward, and we have come to both understand and recognise the need for intimate, specific ways of making theatre, working alongside as co-collaborators with people living with HIV so that the work created is co-produced in the spirit of accomplices rather than advocates with its inherent connotation that ‘some’ need to advocate for ‘others’.

I teach well-being, health and communication using performance and creative co-production at a university to both undergraduate and postgraduate students. I have worked in this field, predominantly based on the arts and health, since 2003 and have established and explored many different ways of working co-collaboratively ensuring spaces of equity and celebration. I practice this area, and in this way, because essentially, I believe that we need more spaces and ways in which to contextualise and understand what our health is, and to understand that health is experienced on a spectrum.

As a teacher of applied theatre and socially engaged practice, I have been much consumed with the training of individuals to work within this field, specifically in terms of performance making in response to health. I am conscious of what constitutes engaging and ethical practice specifically in the field of working co-collaboratively with women living well with HIV, and what is important to do, as well as what the basic non-negotiables are in establishing such a practice.

Being mindful of our graduates going forward and continuing work in this field, what I outline below is the essence of my ways of working both in terms of my practice as a facilitator and theatre-maker, and in my pedagogy. Essentially my approach can be distilled into holding the idea of spaces of kindness, and co-collaborative ways of working and learning.

If you are planning to engage in community-led performative, artistic and cultural responses with women living with HIV, but especially women living well with HIV, here are my suggestions for accessible, ethical, responsive, celebratory and co-created practice in terms of approaching setting up of the work, delivering and making the work and the ‘after’ the work has occurred.

Ethics: Not just having ethical clearance and Advisory Boards, but you want the Advisory Board to take part in some of the practice, to be alive to it, so they know and understand what is happening in the space.

An awareness of space:

Invitation: This is an act of invitation to participate, not a diktat. It is an intent and sensation that all are welcome.

Equity: Individuals can participate at any level they wish to; for some participants acknowledging that it is enough simply to be in a room; others to be challenged, and to direct the focus of the work. What has worked brilliantly with Positively UK in our partnership is that entering the space you would not know any individual’s HIV status (or employment or asylum/leave to remain status), so the rationale for entering the co-production is left deliberately blurred.

Openness – to whom and whatsoever is in the space: This is conveyed through choice of location, atmosphere in the space and access to the space but also in terms of how ideas are discussed and held.

Celebratory space: Providing spaces in which we can celebrate but also recognise both the shade and the light of living with HIV. The driver is to ensure that the practice does not reinforce stigma.

Ideas of kindness: Much of our practice needs to be imbued with a concept of radical kindness. ² A positionality that acknowledges the multiple and often competing needs within the room and that all layers are welcomed. The facilitator’s intentions or desires for the practice should never have primacy in these spaces.

Active listening and hearing: Being attuned to the participants, being responsive to what emerges in the space and integrate into the co-collaboration.

Practicalities:

Ensuring there is money for excellent food (no supermarket branded biscuits) and money for transport.

Being aware of the sub-layers of the space, the materials and the invitation are also symbolic, their quality sends the message: you are valued.

After the work has occurred: Ensure continuity, not solely held by you as the practitioner but also by working closely with key organisations and putting other routes into place to ensure opportunities for growth and future leadership for the participants.

This is just the start of what I hope will be an ongoing dialogue and I look forward to hearing others’ views and about ways of working that fundamentally makes space for women living well with HIV to take up space and make and engage in artistic practices that celebrate and extend the conversation of what it means to live well with HIV.

Yours sincerely,

Dr Katharine E. Low

Senior Lecturer, Applied Theatre and Community Performance

www.katharinelow.com