ActALIVE: Addressing HIV/AIDS-Related Grief and Healing Through Art

"The Hands Project," developed at the Life Home Center in Phuket, Thailand. Women and children affected by HIV/AIDS make a mural by pressing their painted hands on a white canvas and signing their names. The technique has been shared as far away as Kenya, at a home for children orphaned by HIV/AIDS. Photo by Jose Luis Gay Cano

The HIV/AIDS pandemic has, during the past twenty years, left more than 40 million people worldwide infected and many more millions affected by it in one way or another, from widows left to support their families to orphans who have no family left at all.

In this context, grief is ever-present, and healing seems a challenge almost beyond measure. The good news is that the human spirit, ever undaunted, is alive and well and living in the artistry and creativity that has been applied to address HIV/AIDS, not only in terms of prevention and education, but also with regard to grief and healing, struggle and transcendence.

This essay appears in a slightly different form in “The Art of Grief: The Use of Expressive Arts in a Grief Support Group,” edited by J. Earl Rogers (Routledge, June 2007), part of the publisher’s series on “Death, Dying and Bereavement.” The book examines the increasing use of art and expressive therapies in grief counseling. It includes an eight-session curriculum for use with grief support groups as well as alternative modalities of grief-related art therapy. This article is a chapter by Janet Feldman, detailing the activities of ActALIVE ("Arts for Creative Transformation: Activism, Lifeline, Inspiration, Vision, Education"), an arts coalition with 300 members in 35 countries.

The international arts coalition, ActALIVE, is composed of 300 members in 35 countries, both individuals and organizations, who use the arts for educational and healing purposes. One of the most compelling motivators for creative solutions to addressing the myriad challenges HIV/AIDS presents is that grief and loss are endured so regularly, especially among the very young and those of the first generation, whose adult children have died from HIV/AIDS-related complications, leaving behind their parents and descendents.

Visual Arts: Education, Expression and Empowerment

There are a number of empowering, educational, and enjoyable activities that have been developed to enhance coping skills, encourage a sense of hope for the future and improve the chances of healing. One of them, called "The Hands Project," has been developed at the Life Home Center in Phuket, Thailand. Groups of women and youth are brought together to make a mural, on paper or cloth, using their own brightly painted hands, which they press into the material, signing their names underneath their handprints. These murals have been created as far afield as Kenya, where the technique was brought to a home for children orphaned by HIV/AIDS.

This activity is simple and fun, but also profound in its ability to help people feel visible, to encourage a sense of well-being and community, to allow for the expression of emotion when words and other forms of active engagement are not possible or do not in themselves convey what is in people's hearts and minds.

Another activity that has proven to be both uplifting and educational is the making of "peace tiles," so-called because this project began as a creative gift for children affected by war in Northern Uganda. Conceived by artist and educator Lars Hasselblad Torres, the process involves making collages on small wood tiles (eight inches square) — using a wide variety of materials, from found objects to newspaper clippings, to personal mementos of significance — and gluing the design to fix it to the tile. The results are displayed in murals of 30 tiles each.

A Peace Tile made in India for World AIDS Day 2005, as one activity of the International Peace Tiles Project, which began as a creative gift for children affected by war in Northern Uganda. Conceived by artist/educator Lars Hasselblad Torres, the process involves making collages on small wood tiles (8 inches square)--using a wide variety of materials, from found objects to newspaper clippings, to personal mementos of significance--and gluing the design so as to fix it to the tile. The results are displayed in murals of 30 tiles each. Photo by Bhawani Kusum

The International Peace Tiles Project began as a single exercise, meant to provide uplift to youth struggling to cope with the loss of families and of childhood itself, and has since branched out to encompass other themes and subjects, such as HIV/AIDS, sustainable development and urban visions for healthier cities in the future.

For World AIDS Day (December 1),2005, ActALIVE members (of which Lars is one) and others in 12 countries organized tile-making workshops, which involved 1,000 or more youth in the production of hundreds of tiles. These were developed into murals that were shown in eight countries, including Nigeria, Senegal, Kenya, The Gambia, South Africa, the United States, India and Switzerland. Three international murals composed of mixed tiles from different countries were shown: one in South Africa, one in Switzerland (at the headquarters of the Global Fund for AIDS, TB, and Malaria), and one in India. An Indian mural was shown at the Marquette Children's Museum in Marquette, Michigan, and youth there interviewed their Indian peers about this art project and about the challenges HIV/AIDS presents to their families, communities, and country.

In Jaipur , India, the nonprofit Gram Bharati Samiti involved 40 schools and assorted organizations in their World AIDS Day project, and hosted a conference on that day at which the murals were exhibited and awareness about HIV/AIDS was raised. Murals in India and a number of the participating countries were then donated to schools, children's homes, hospices and the youth wings of hospitals.

The beauty of this project is that it can be done on both an intimate and a massive scale: an individual can make one tile, small groups can gather to make tiles on specific themes, and coalitions of people and organizations can come together — as they did in India and around the world — to create art that is accessible both locally and globally, to the individual and to the collective. Regardless of the size or numbers involved, educational messages can be conveyed, health enhanced and a sense of hope and well-being increased. An added bonus is that the resulting product can be donated to help youth who are coping with illness, loss and grief.

An HIV/AIDS lesson component is often included as part of the workshop program, an important adjunct to the creative activity. Research and anecdotal evidence suggests that HIV/AIDS education is often more effective when paired with "entertainment" in some artistic form, and the testimonies received from those who have hosted workshops and created murals speak eloquently to this point.

Theater and Music: Poetry in the Note of Life

Poster for “Tsha Tsha,” drama series produced for TV that focuses on young people living in a world affected by the realities of HIV/AIDS. Using the Narrow Cast concept, facilitated viewing sessions are organized in school settings, guided by peer educators. Developed by Richie Adewusi and YouthAid Projects in Nigeria

Theater arts have proven to be equally powerful and compelling in terms of addressing the educational, psychological, emotional and spiritual dimensions of the HIV/AIDS pandemic. Many members of ActALIVE use theater for educational purposes (so-called "edutainment"), from a peer counselor in Nigeria (Richie Adewusi of YouthAid Projects) who has written a family drama now being serialized for television audiences there, to an accountant and part-time playwright in Kenya (Stan Tuvako, a volunteer for KAIPPG International, and co-founder of the ANFORD youth group) who has created a multimedia performance piece for youth, called "Poetry in the Note of Life." This play contains poetry, spoken word, music, dance and song — some composed by youth themselves — and is performed for and by youth.

One nonprofit administrator in Kenya (Ron Odhiambo of the St. Egidio Community) has written a play about the Peace Tiles — both the concept and mission, as well as how to make them — and taken it on the road, performing not only in Kenya but also in Uganda and Tanzania. This play has also been filmed in Kenya by Kenyan and American youth who took part in a joint storytelling project called JUMP (Juveniles Using Media Power) during the summer of 2006 — and plans are being made to distribute it more widely as an educational resource.

JUMP uses film, photography and audio (podcasting) to help youth create stories about their lives, with the goal of instilling a sense of pride and confidence, building bridges of understanding between youth of various countries and cultures, and changing the world for the better, one youth interchange at a time. All of the Kenyan youth who took part in 2006 have been in some way affected by HIV/AIDS — including loss of parents and other family members — so the project for them, and for the American youth as well, proved cathartic as well as educational and creative. JUMP, conceived by educator Robin Worley (Hawaii), will continue to address similar subjects in future, providing an outlet for grief and loss, and an uplifting way to express and convey to others the challenges so many youth face today.

Jacky, a young AIDS activist in Kenya, whose audio podcast tells the story of what happened when HIV came to her family. Jacky’s podcast was facilitated by JUMP (Juveniles Using Media Power), a project linking high-school students in the U.S. with youth partners in developing countries for the creation of joint media projects that tell stories about their lives. JUMP was conceived by Hawaiian educator Robin Worley. Click here to listen to Jacky’s story: http://www.jump.libsyn.com/

In a compelling book on this subject, "Playing for Life: Performance in Africa in the Age of AIDS," author and communications professor Louise Bourgault (Northern Michigan University) discusses theater, song, poetry and dance as avenues for expression, education and empowerment around the pandemic. "One Life To Live," a South African play combining drama and dance, tells the story of a domestic servant who struggles to become a professional singer. HIV/AIDS prevention messages, as well as the gender inequality faced by women (itself a risk factor for HIV infection), are subjects conveyed to audiences via visual and auditory entertainment. This method is especially effective for those with limited literacy (who cannot read written texts), or those who know and use a local language only.

The South African song, "Come On," contains the exhortation to provide care and support for people living with HIV/AIDS: "Brothers and Sisters...come on, come on, let's take initiatives, let's all be involved, let's care for these people with HIV/AIDS, let's keep them strong and looked after." Music is one of the most frequently used and popular methods to convey HIV/AIDS information. Often, new lyrics are added to older and easily recognized tunes, thus linking something traditional and familiar with the unfamiliar concepts and issues being addressed. "If You Don't Know AIDS By Now" ("...you will never, never know...") uses the chorus of a well-known American song to convey its prevention message ("...don't get too excited, and do unplanned things, because one mistake you make, can ruin your life forever.")

One project working at both the local/personal and global levels is One World Beat, which yearly organizes concerts, drumming, and other activities worldwide. During the past four years, thousands of people in 45 countries have taken part in events ranging from an informal living-room get-together in Switzerland to a stadium in South Africa during Festival 2006, where 4,000 participants gathered for an hour of drumming, linked to others in 16 countries who were doing the same thing, at the very same hour.

Poster for One World Beat, uniting musicians, nonprofits and music lovers around the world in concerts and related activities meant to make a difference through music. Their Global Music Festival in 2004 focused on HIV/AIDS, bringing thousands of musicians, fans, volunteers, nonprofits, sponsors, organizations and people from all walks of life together for 200 events in 46 countries during one spring weekend. Funds raised were donated to Keep A Child Alive, which provides life-saving treatment for children and families affected by HIV/AIDS. OWB was founded in 2003 by Andy Aidan Treichler.

One World Beat has had a consistent focus on making a difference through music, which it seeks to do by encouraging activism and caring on the part of individuals and groups, and by linking people in such a way that they feel a sense of global unity, sharing and purpose. HIV/AIDS and health concerns — for people and for the planet — are a primary focus for this organization, as are peace and healing. Everyone is welcome to take part, whether a professional musician or music lover who drums out a tune on a tabletop.

This kind of broad appeal and involvement of both professionals and amateurs alike can also be found in the work of Playback Theater, an international organization with chapters worldwide. The Playback method takes as its raw material the true stories of people's lives, converting them into drama that is accessible, highly charged and deeply moving. Themes include HIV/ AIDS, healing, and coping with grief and loss. One recent project, in New Orleans, works to help people address the enormous sense of helplessness, fear, anger and sadness felt in the devastating wake of Hurricane Katrina, which destroyed large parts of the city in August of 2005.

Writing for Your Life

The written word has proven equally compelling as a medium for expression of longing, grief, struggle, hope, insight, compassion, rage and joy, in addition to its ability to motivate action and bring about change. Author, journalist and yoga expert Michael McColly has for many years been writing about HIV/AIDS and health, subjects brought closer to home by his own HIV-positive status. Michael's new book, "The After-Death Room: Journey into Spiritual Activism," is a memoir that examines HIV/AIDS from numerous perspectives — including the individual and the global, the physical and spiritual, the intellectual and emotional — and through a cross- cultural lens, following the author as he travels the world meeting a wide range of activists, from Zulu healers in South Africa to Buddhist monks in Thailand, sex workers in India to mullahs in Senegal, African-American ministers to artists in Vietnam.

"The After-Death Room: Journey into Spiritual Activism" by Michael McColly (Soft Skull Press, 2003), a memoir examining HIV/AIDS from numerous perspectives, following the author as he travels the world meeting a wide range of activists: Zulu healers in South Africa, Buddhist monks in Thailand, sex workers in India, mullahs in Senegal, African-American ministers, artists in Vietnam. Cover photo by Jide Adeniyi Jones

Writing becomes part of what the author does to address the effects of HIV/AIDS in his own life, in addition to whatever his work can do to help others both survive and thrive, despite or even because of this disease. The personal links to the political and reportage blends with autobiography in such a way that insight, understanding and a feeling of connectedness emerge, which can aid personal and planetary growth and healing. Yoga is an integral part of this work as well: Michael teaches simple Yoga exercises wherever he goes, believing this to be as effective and necessary as writing or any other form of activism to address HIV/AIDS.

In the epilogue to the book, he makes a compelling case for the role and power of individuals to help themselves, others and the world, no matter who we are, where we are, what our circumstances or health condition. For those struggling with illness, loss and grief, as well as those trying to provide comfort and give needed support, his insights are especially pertinent and valuable:

We tend to believe that the solutions to complex social problems require great leaders, technological feats, enormous sums of money, and reams of think-tank experts. But the causes of injustice and suffering are never- ending. They demand another kind of intelligence, one that does not always follow reason, the correct political ideology, or religious doctrine. In fact, suffering confounds us precisely because we believe we have the will to eliminate it. Every religious tradition reminds us that our only choice is to embrace and learn from suffering. Almost everywhere I went around the world, activists asked me to stay and help them. Their pleas revealed to me a simple truth about political and social change: it begins and is sustained by individuals taking action.

Community Actions and Personal Expressions

In Canada, a large-scale event called "Time To Deliver: Community Action on AIDS" is a public-engagement installation that brings the urgency of HIV/AIDS home in a potent, visual way: a field of 8,000 flags, arranged in the shape of a red HIV/AIDS ribbon surrounded by white crosses, confronts visitors with the dramatic and tragic scale of the pandemic. There is one flag for every person who currently dies each day from HIV/AIDS-related causes. This moving tribute is a powerful way to connect communities in the fight against HIV/AIDS and to mobilize support for initiatives that address health issues and poverty. Currently installed in eight communities across Canada, "Time to Deliver" is proving to be a focal point, bringing awareness and spurring action on issues surrounding the disease. Through this public art piece, the nonprofit SOLID (Salt Spring Organization for Life Improvement and Development) is calling on community groups worldwide to make their own "Day of AIDS" installations. Organizations with a focus on global issues, health, poverty and gender equality are invited to participate in the campaign to mobilize communities, awaken the public and step up action on the part of governments, groups and individuals.

A Peace Tile by SOLID. a Canadian nonprofit supporting communities in sub-Saharan Africa contending with HIV/AIDS. Made by the Global Awareness Club at Gulf Islands Secondary School, SaltSpring Island, B.C., on World AIDS Day 2005, for their sister school, Pitseng High School, in Lesotho, Africa. Photo by John Martin-McNab

This type of action makes a potent and unforgettable statement about the issues and urgencies brought on by HIV/AIDS, which has consequences at the individual and interpersonal levels, and at the community, national and global levels. The exhibit encourages viewers to get informed and involved, to take action, donate and volunteer. It provides an opportunity for community-based groups to become involved in an international public education campaign through public art, linking these grassroots organizations together into a network of like-minded and determined activists who can share skills and resources, community-to-community, across the planet.

One additional aspect of this project contains an important element related to grief, support and healing: In the spirit of engaging people to act meaningfully, the flag project takes on another life when the flags are taken down. Artists, teachers, grandparents or anyone handy with a needle and thread is invited to transform flags into squares for quilts, which will be assembled by SOLID and sent to Lesotho to serve as warm blankets for orphans who live in the mountains.

On a smaller scale in terms of size, but hopefully equally effective, is a project in the works — organized by ActALIVE and Arts for Global Development — that will ask people to decorate postcards, using HIV/AIDS as a theme. These will be displayed both in physical settings and online. The goal is similar to that of the Peace Tiles: to encourage expression and hopefully aid in education, healing, connection and communication around the effects of the pandemic.

Puppets Perform, People Are Persuaded!

Puppets are playing a vital role in HIV/AIDS education and prevention, and addressing related human-development challenges and issues: domestic abuse, prison life, cultural diversity, political and social freedoms. Gary Friedman Productions makes use of puppets to address all of these subjects, working in diverse communities around the world, from Australia to South Africa to Fiji in the South Pacific.

Writing eloquently (on his Web site) about his artistic medium of choice, Friedman says:

“Puppets Against AIDS,” a production designed by artist Gary Friedman that began in South Africa in 1987, and toured the world for nine years from Reunion Island to the remote eastern Arctic, working mainly with indigenous people.

Puppetry has a unique ability to bring people together to examine community social issues. Our productions combine both music and humor, two proven ingredients for crossing cultural and language barriers and reaching people internationally. The puppet is a visual metaphor, representing “real life,” but is also one step removed from the real world. It can inform and educate at the same time. Puppetry holds up a mirror to society and gives people a chance to look objectively at themselves. It especially enables people to laugh at themselves, and is less threatening than the human performer.

Puppetry can be used to challenge social and political barriers as well as stereotypes, because it represents a “neutral” [observer]. Puppets do not necessarily have to belong to any particular culture or language group or social class, so they can be adapted to the target audience. They can also say more than the “live” actor, especially [effective] when tackling taboo issues like sex, dying and racism. It can deliver the strongest possible message in a light-hearted manner, without offending or frightening the audience.

While Friedman does puppetry for a living, many who use puppets do so on a more informal basis. In rural Western Kenya, giant puppets in the shape of a person stroll through the streets on World AIDS Day and other occasions, dispensing educational materials as they move through crowds excited by their imposing visual presence. Puppetry is becoming an important component of many community health programs, from India to Japan to the United Kingdom.

Memories and Maps: Books, Boxes, and Bodies* In Uganda, the National Community of Women Living with AIDS (NACWOLA) and the international development nonprofit, Save the Children, have developed the "Memory Project" as a way of helping children and families cope with the effects of HIV/AIDS, including the loss of parents, the resulting stress and grief, and the need to move beyond sorrow to focus on survival as well as healing.

Ugandans training for the Memory Project, which trains HIV-positive parents to communicate with their children about the difficult issues of HIV status, death and dying, and estate planning. Families construct Memory Books to document family history. The training has spread the project throughout Uganda, Kenya, Zimbabwe, Ethiopia, Tanzania and South Africa. Created by the National Community of Women Living with AIDS (NACWOLA) in Uganda and the international development nonprofit, Save the Children.

The making of a Memory Book can improve family communication about the difficult issues of HIV status, death and dying and estate planning. These books also serve as a precious reminder of family history and traditions, and are sometimes the only possession parents can leave for their children. Many people express gratitude for this kind of project, which can increase a sense of empowerment, hope and purpose, because one is doing something constructive and meaningful. A participant writes: "I am very optimistic now; I have been taught and I teach others, I enjoy talking about good nutrition and having a positive attitude." Another says: "I am not worried about the future. The Memory Book and training have helped me explain to my children that I am positive and that one day I will die, so I have been able to prepare them. But I also explain that everyone dies one day, and I am just the same."

A training program has spread the project throughout Uganda, and partnerships have helped to extend its use to other African countries, including Kenya, Zimbabwe, Ethiopia, Tanzania and South Africa.

In South Africa, writer and therapist Jonathan Morgan has established the Memory Box Project, which first debuted at the July 2000 International AIDS conference in Durban. Made from recycled cardboard boxes, Memory Boxes are similar to Memory Books, telling stories that range from loss and despair to hope and healing. Morgan has most recently developed the "Ten Million Memory Project," which aims to reach ten million African children with memory-work activities by 2010.

And in conjunction with a group of HIV-positive women, Morgan and others have developed a project called "Body Maps," in which human figures are drawn on life-size panels of butcher paper. Each one is unique, expressing a gamut of emotions and varying in style and complexity, though all reflect each woman's thoughts and feelings, fears and aspirations and views about the virus residing within her. The process is described in this way: "Body maps are made by tracing two bodies, of the artist and a partner. The artist then goes about filling in the traced body with images, words, patterns, designs and scars. A type of art therapy, the maps are used in conjunction with group therapy, photography and writing in order to help each woman deal with her HIV-positive status."

The Art(s) of Acting ALIVE

This chapter has attempted to give a brief overview of the variety of artistic responses, media and tools that are being used to address the many dimensions, issues, challenges and effects of HIV/AIDS. The essential and invaluable role of art, artists and the creative spirit that resides in every individual is daily being tried, tested, utilized and called upon to take up the vital and urgent work of prevention, education, support, comfort, growth and inspiration, with ever-increasing regularity, effectiveness and success. From personal wellness to social healing, art helps us to truly "feel" and also "act" more alive, which in turn increases our willingness to continue living — despite life's struggles and inevitable sorrows — and links us at the same time to something more transcendent. It is this "larger view" — and the spiritual dimension that is tapped and nurtured by rising to meet our daily challenges in fresh and creative ways — that places human suffering within a more "workable" frame of reference, allowing us to move beyond grief, loss, and pain into spaces of joy, hope, compassion and activism.

“Time To Deliver: Community Action on AIDS,” installation of 8,000 flags arranged in the shape of a red AIDS ribbon surrounded by a field of white, one flag for every person who currently dies each day from HIV/AIDS-related causes. Installed in nine Canadian communities by SOLID. Photo by John Martin-McNab

On the eve of the recent International HIV/AIDS Conference in Toronto, convened every two years in a different location around the world, I was asked — as an artist and community activist — to answer this question: “How can we bring about an end to AIDS, as world citizens fighting the pandemic, making it our individual and combined mission over the next two years?” I include my response in closing, with the hope that together we can “act” to keep the world “alive,” and each of us within it!

I approach this question as an activist, artist, and founder/director of two HIV/AIDS and development nonprofits.

As an individual, I think it is important to educate oneself, to keep updated on HIV/AIDS-related issues and challenges, both locally and globally. This is one form of activism, and there are many others: writing letters to news media and politicians, talking with friends (and complete strangers!) about what we learn, engaging in creative projects, linking with others in collective activities on a range of issues, from lack of treatment access to more funding for programs. Working with people affected by or living with HIV/AIDS, volunteering with a local nonprofit (or starting one!), reaching out to support efforts halfway around the world, becoming a member of a discussion group, marching in demonstrations.

As collective entities — whether that be organizations, networks, coalitions, dynamic duos or in whatever form — we can also do so much to address and reverse this pandemic. ActALIVE is a good example: The coalition is composed of 300-plus members in 35 countries, all of whom are activists in their own right. As an organization, we have engaged in endeavors such as the co-production of an edutainment music CD in Sierra Leone, co-creation of an African Youth HIV/AIDS Best Practices Handbook — with 95 creative projects from 25 countries — and in Peace Tiles, which involved 1,000-plus youth from 12 countries in tile-making workshops and mural displays on HIV/AIDS themes, for World AIDS Day 2005.

As artists, activists and world citizens, we have a powerful role to play in bringing about an end to HIV/AIDS. Art — and creativity in all forms — is already saving lives, instilling hope and offering new solutions to a disease that has sometimes been seen as unstoppable. The acronym, ActALIVE — which stands for “Arts for Creative Transformation: Activism, Lifeline, Inspiration, Vision, Education” — reflects the multifaceted role that arts and the creative spirit within each of us can play in stopping this pandemic for good. The slogan of one prevention and education campaign says it all: Make Art, Stop AIDS!

Janet Feldman is founder/director of an international arts coalition, ActALIVE, whose members use the arts and media to address HIV/AIDS and development. She is also founder/director of the international branch of KAIPPG, a Kenyan HIV/AIDS and development organization. In addition, Feldman is an editor of an arts-and-development e-journal, art'ishake; co-founder and adult ally of the Global Youth Coalition on HIV/AIDS; board member of JUMP; news director for One World Beat; co-creator of development projects focusing on ICTs/ODL, nutrition and food security, empowerment of women and youth, health and education and poverty alleviation. She is a trained mediator, collage artist and social-change activist.

*Note on ActALIVE affiliations: ActALIVE has members who belong to organizations mentioned in this article — SOLID, Playback Theater, Memory Book Project, Memory Box Project (and creator Jonathan Morgan), Body Maps, NACWOLA, Save the Children — that to date are not themselves members of ActALIVE. These organizations and projects have been included in the article by name because of their long-standing work related to art, health, grief, and healing, and because ActALIVE has members either affiliated directly with these entities, or who do HIV/AIDS-related prevention and education activities based on the artforms developed by them, such as "memory work".

Original CAN/API publication: August 2007