Art and Health Promotion: Creativity against HIV and AIDS
Art and Health Promotion: Creativity against HIV and AIDS
Kimani Njogu & Mary Mugo- Wanjau
Geoffrey Cowley (Newsweek, 8 December, 2003) tells a story about how cartoons and soap operas are being used across the world to promote public health. A muppet, Kami, was used to tell the story of HIV positive children in South Africa and to fight stigma. The five year old HIV positive orphan is creatively utilized to highlight areas of life where children are most vulnerable. In making similar efforts in Kenya, Cowley refers to a radio soap opera, Ushikwapo Shikamana (If Assisted, Assist Yourself) in which the lives of ordinary people were creatively crafted between 1998-2004 on national radio and in comic strips to encourage community dialogue on sensitive social and cultural issues. Cowley reports that like musicians, cartoon characters and fictional detectives, muppets can change ways in which people view the world. This is because creative cultural productions target both the cognitive and affective domains. They influence what we know and what we feel.
A number of methodological approaches and behaviour change theoretical models ( such as Health Belief; Stages of Change; Social-Cognitive Learning; Reasoned Action; Diffusion of Innovation) are being used around the world in the development of health messages and to guide behavior change communication strategies – and approaches at the individual, family, community and environmental levels. With regard to sexual and reproductive health in Asia and Africa, the arts could become key for the improvement of health and well being of communities, when buttressed by consistent and correct messages provided by health professionals. The arts when given the space to flourish, can become real agents of social transformation.
The Pandemic
In order to get a grasp of how the arts can be mobilized to address issues of HIV and AIDS related stigma and discrimination, we start by situating the pandemic and its ramifications in Kenya. The first case of HIV in Kenya was described in 1984, and since then the policy environment has gone through at least four key stages. Between 1984 and 1987, there was a general feeling that HIV and AIDS did not really constitute a serious threat. Although the government did set up the National AIDS Control Council in 1985, there were no resources to develop the required awareness-raising and knowledge-increasing programs. Indeed, it was not until 1987 that NACC formally met. Engagement with HIV was peripheral and creative artists did not address it in their works, save for a few isolated cases. The second stage, 1988-1991, showed slightly more commitment to the issue and there were some educational campaigns although these were not well coordinated. A few artists, especially in civil society, started creating works in response to the disease within an atmosphere of hostility from religious leaders who openly spoke against the use of condoms as a method of preventing infections. The Ministry of Health bore the main task of campaigning against the AIDS virus without support from other Departments, as well as civil society organizations. The third stage, 1992-1996, was significant in a number of ways. In April 1993, the government hosted the first National Conference on AIDS and discussions of the socio-economic impact of AIDS were initiated. The 1994-1998 National Development Plan included a section on the economic impact of AIDS. Civil society organizations started focusing more deliberately on the pandemic. The fourth stage, 1997-2001, saw more commitment from government as well as leaders in all sectors of civil society. Faith Based Organizations (FBOs) became involved more systematically. It is also in this stage that the pandemic was declared a national disaster. Nonetheless, although a policy guideline on HIV and AIDS was issued in Sessional Paper No.4, it took another two years for the President to declare AIDS a national disaster. Structures that were put in place during this stage have continued to inform activities in the country with regard to the pandemic.
According to the 2003 Kenya Demographic and Health Survey about 7% of Kenyans aged 15 – 49 years were infected with HIV at the time of the study. Trends show that the prevalence peaked at a level of 10% in the late 1990s (AIDS in Kenya, 2005). New infections among adults have declined dramatically from over 200,000 per year in early 1990s to approximately 86,000, but deaths have continued to increase to 150,000 per year. Approximately 1.3 million adults and 100,000 children are currently infected with HIV and the rates in women are nearly double that of men (AIDS in Kenya, 2005). This is due to a number of factors including gender related power dynamics in families and communities as well as decision making processes on matters of sexual and reproductive health, low levels of literacy and access to education, poverty and cultural practices which make women more vulnerable to the AIDS virus. The difference in infection rates is more evident in young people aged 20 to 24 years where prevalence in women is three-fold that of men of the same age (9% and 2%, respectively) (Kenpop News, 2005). It is estimated that about 10 per cent of adults living in urban and peri-urban areas in Kenya are HIV positive (UNAIDS, 2004).
Creative Narratives
Many individuals in the work force, academic and the arts have succumbed to the virus and others continue to do so at an alarming rate. The mobilization of creativity to address the pandemic becomes paramount not only because people have different learning styles but also due to the interconnections between biology and art. In addition to celebrating human creativity, the visual and performance arts can be catalysts for change as well as instruments through which sensitive and complex issues can be tackled. The arts in their various forms – dance, story telling, photography, comic books, posters, poetry, film, body maps, soap operas, cartoon strips, stage performances, music and so on – are being used, globally, to deal with burning issues of gender, health, sexuality, violence and governance. They are also being utilized in the fight against HIV and AIDS in most African and Asian countries. When supported by unwavering commitment of political leaders and the enactment of facilitative policies and laws, the arts can be vital tools for community mobilization and social marketing against the AIDS pandemic. The arts resonate and are propelled by global and local events. Whether they are addressing terrorism, HIV and AIDS, corruption, dictatorships, poverty and economic deprivation, the pursuit of freedom, gender inequalities, the quality of leadership and interpersonal relationships, artists have always sought the images that capture their inner feelings about the phenomenon. Meja Mwangi (The Last Plague), Carolyne Adalla (Confessions of an AIDS Victim), Margaret Ogolla (The River and the Source) and Marjorie Mcgoye (Chira) have, among others, discussed the impact of the AIDS pandemic in households.
In Chira (1997) Otieno does not at first know how to deal with Julia’s emaciated body. He was ‘terrified of touching her with his bare hands” (p. 163). Left in the cold, Julia has nowhere to go and is eventually buried at the Lang’ata cemetery. We are told:
“ Gabriel had led the police to Mama Fulani at her place of work, but she denied any knowledge of the girl’s family or home place. She felt she had been magnanimous not to set up a hunt for Julia when she stole her family property and ran away with it. She was affronted to be any further involved. Nobody, according to the missing person reports had been looking for Julia. Nobody responded to the loudspeaker appeal to explain where she spent her last days.” (p.166).
Whereas Chira is about sexuality and morality – traditional, Christian and secular – in the context of HIV and AIDS, in The Last Plague, Meja Mwangi tells the story of Janet and her struggles to deal with culturally assigned notions of femininity and masculinity. She interrogates gender stereotypes and power relations which put women at the risk of infections because of social prohibitions against open articulation of sexuality and the practice of wife inheritance. Meja Mwangi shows that social constructs such as gender are malleable and constantly changing. They are contested and negotiated in time and space. Society is taken to task in Confessions of an AIDS Victim because of its tendency to suppress women’s voices and to provide the fodder for unequal gender relations. Patriarchy inevitably perpetuates the oppression in households and communities. In Confessions Adalla argues that women are victims of a socio-cultural system that predisposes them to sexually transmitted infections, including HIV. This theme is also addressed by Ogolla in The River and the Source (1994) through the character of Becky – an air hostess married to a Canadian pilot. Becky runs away from her rural home to escape her father’s control and acquire wealth. In the final analysis, the pursuit of materialism comes with a price – she contracts the AIDS virus. In South Africa, the novelist Sandile Memela tells the story of sixteen-year-old Zenzele and her ten-year-old sister Mpumelelo as they struggle to save their father. In the novella, Flowers of the Nation (2005), Memela shows the power of family unity as Vusi, Zenzele’s uncle, steps out to take responsibility and help the children deal with the disease in their home. Things become clear to Zenzele:
“It wasn’t just the youth who could bring the leaders and achievers closer to the community. What about establishing a nationwide network of school leavers? All those former students who had moved on in life could return to their schools and communities to make a positive contribution… growth begins in the mind and, like a garden, the flowers of a nation could be able to grow and blossom.” (pp. 87-88).
Significantly, creative writers are responding to HIV and AIDS in their works especially through a focus on prevention, stigma and social support at the family and community levels.
In the remaining part of this chapter, we discuss from an insider’s perspective, an initiative undertaken by Africa Health and Development International (AHADI), Raks Thai Foundation and other organizations in East Africa and the Mekong region, to use the arts in the fight against HIV andAIDS. Specifically, the section looks at activities leading to an Art for Action Against HIV and AIDS Festival held in Nairobi in October 2004. The Festival was an opportunity to express grief, ensure bonding between loved ones, and show hope for the future through creativity. The Festival was not an event; rather, it was a season to celebrate creativity, in which established artists worked with younger ones to put together artistic pieces in Korogocho for display at the GoDown Arts Centre, the Nairobi Bomb Blast Site, Kenya National Theatre, and the French Cultural Centre as well as other spaces in the country. In addition, established contemporary dancers trained young Shangilia Mtoto wa Afrika artists in body movement to bring to the fore issues related to sexuality and HIV and AIDS. There was also a workshop on stigma and discrimination at the GoDown Arts Centre, again reemphasizing the role of the artistic spaces and creativity in the maintenance of health and wellbeing. Some of the artistic materials produced by the organizers for the Festival are still being shown as part of the communication strategies commonly adopted by AHADI.
The arts can contribute in strategic communication for combating the AIDS pandemic by being applied to behaviour change and advocacy. They can be applied in research based interventions purposefully and consistently. Strategic communication is a necessary condition, though it may not be sufficient, for preventing HIV transmission and for augmenting care and support programs (Singhal & Rogers 2003: 206). According to Singhal and Rogers (2003: 223) communication interventions ought to go beyond the mass media of television, radio, film, video and print to include crafts, art, textiles, murals, toys and other culturally appropriate expressions. On the East African coast, the khanga, a fabric worn by women, carries proverbs and sayings and has tremendous potential as a channel for HIV and AIDS messages. Equally, stickers in public transport could be a channel for key health statements presented creatively. A poster ‘what is good sex?’ developed by Youth Exchange Network in Nairobi used cartoons and a youth slang –sheng– to link safe sex and enjoyable sex to HIV prevention.
Singhal (2003) argues:
“Communication strategists have also been guilty of viewing culture as static and mistakenly looking upon people’s health beliefs as cultural barriers. This conceptual coupling deconstructed and reconstructed so that new positive cultural linkages can be forged. Attributes of culture that are helpful for contributing AIDS should be identified and harnessed” (2003: 241).
When used as a dynamic process, culture could be a tool for social change and art can be used for the creation of awareness, behaviour modulation , advocacy, therapy and the mobilization of social support. In ‘Storytelling as Psychological Intervention for AIDS Orphans in Africa,’ Yegan Pillay (2003) shows that the oral tradition has played a key role in self-understanding and reading. Stories are portable and this makes it possible for them to be used in schools, places of worship, homes, community centres, and the mass media. The story can function as a catalyst for household or community discussion on sensitive issues related to sexuality. It could also allow the venting of emotions (Pillay 2003:113) as well as a creative call for social support, which includes comfort, assistance and information sharing. In African societies, the extensive social networks have historically provided social, psychological and material support in times of crisis – and it is common to see child lending, fosterage, sibling caretaking and adoption. The role of these networks can be revived through the arts. Equally, the arts could also be useful in fighting the phenomenon of denial, so prevalent in families.
Family and Denial
At the family level, the AIDS scourge is immensely disruptive. When a member is infected, family income and savings are used to feed, nurse and treat the infected individual. In certain cases, infected members break away from the unit due to stigma and discrimination. If parents become sick and die, the family is restructured and new social roles are assigned. Most African countries have numerous cases of child headed and elder-headed households. The pandemic is disruptive also of institutions as the lives of teachers, health workers and other adults become sick or die.
How does the refusal to accept that HIV exists play itself up in households and communities? Here we present some stories narrated during the Arts Festival held at the GoDown Arts Centre in October 2004.
Story 1: An incident of Exclusion: GM (Nairobi)
Baby Joy lay in her cot fighting desperately to stay alive, her fragile body battered by disease and each breath consuming her rapidly dwindling energy until finally the battle was over and she had, mercifully, gone to rest.
Her story though similar to several others I have witnessed shall remain deeply etched in my memory because, unlike so many others, the stigma related to HIV AND AIDS rather than poverty took away her fighting chance.
I admitted Baby Joy as an Intern at 2 years and 10 months at a mere 12kgs with multiple infections and failure to thrive. The friends and relatives were supportive and most striking was her father who would sometimes nurse her throughout the night (a rare phenomenon as this is usually a woman’s domain).
All was well as Baby Joy made remarkable progress regaining her strength and overcoming most of her opportunistic infections. The medical team was pleased; her family called it a ‘miracle’ and indeed she brought joy to us all. The sunshine did not last long with the mention of pretest counseling for HIV to rule out the virus as a cause for her failure to thrive.
I watched in disbelief as the loving family fell apart. Accusations and counter accusations flew between man and wife and between relatives from both sides of the family. I was certain one among them would remember Joy in all of this, but before long the visits, the tender nursing care she had received from the family, the teddy bears, the fruits, the cards and the drugs were no more. Sje was forgotten. Anti-retroviral therapy which was for many an affordable was for her inaccessible because her family would not accept an ‘unclean child’, an ‘omen’, a ‘cursed one’.
And so it begun: a battle fought bravely by one who had for most of her life gracefully borne the pain of disease, which in her time of need was worsened by the abandonment due to the ignorance and stigma associated with HIV and AIDS.
Baby Joy died not because her parents were poor and could not afford her treatment, but due to the stigma associated with her condition. She was born weak and was loved by all until it became evident that she had the AIDS virus, contracted through mother-to-child transmission. Although therapy was available, the family refused to be associated with an “unclean child.” The child died because her parents would not accept to provide resources for her continued treatment.
Story 2: Sexual Abuse of HIV Affected Children: UL (Bangkok)
In a rural village of Payao province, northern Thailand, two girls aged 6 and 8 years at the time, were repeatedly sexually abused by several men, including their own relatives. One of the girls is orphaned by AIDS (her father died from AIDS related complicated). The physical examinations were not conducted immediately after the abuses; therefore there was no physical evidence of the abuses. However, the local physician who examined the girls confirmed signs of violation.
The cases involved several men; one of them was a respected village elder. And because the mother of one of the girls is HIV positive and a former sex worker, the community believed that the men involved were innocent. They, instead, argued that the girls lied about the abuses, or they manipulated the accused men. A few believed that it was a fabricated scheme invented by the girl’s mother to get money from the accused men.
The girls stood by their stories, even after repeated interviews by various people including a police officer, a social worker, a public defender, and one of Raks Thai’s staff. Indeed, a few years after that the girls still maintained their stories. The stories were told in similar fashion with the same facts. Despite this circumstantial evidence, most of the community members refused to believe the girls. In addition to Raks Thai Foundation, other NGOs were also involved, but none of these were willing to take legal action. That left Raks Thai staff to file the complaints. They took temporary custody of the girls. Raks Thai’s staff took the girls to a government Half – Way Home for disadvantaged children in a nearby province to protect them from further abuses and threats. (After the initial investigation, the police wanted to send the girls back to the families where one girl had to share the house with the accused).
Meanwhile, the parents, especially the HIV positive mother, were under pressure from the community, even her own clan to drop the charges. The relatives of the HIV positive mother forced her to move out of her parent’s home where she was staying (the other mother did not face the same problem; she is not HIV positive and is still living with her husband). The relatives blamed the HIV positive mother for causing trouble and bringing shame to the family. She had to seek shelter from Raks Thai’s staff. Eventually Raks Thai Foundation gave her a small sum of money to build a temporary house on an empty plot near her parent’s home. She is still living in that house illegally. The community also prohibits the mother and her family to use the community forest. She and her family even those who do not agree with her decision to file the legal charge, are ostracized by others in the community. As a result, they are not entitled to the community revolving funds provided by the government. The HIV positive mother was distraught and showed signs of a nervous break-down. She had considered dropping the charges on several occasions but eventually changed her mind after a series of consultations with a few people including Raks Thai’s staff and a counselor of the area hospital. She is still living with anxiety and always worried about the outcome of the legal action.
The violation of children by adults is common globally and because of culture, power, economic might and so on violations are more often than not swept under the carpet. In this story the girls are violated by several men including a village elder yet the community would not listen to the children because of this family background and no legal action would be taken against the violators. Through a petition by Raks Thai’s staff, the girls were transferred from Payao to a nearby province to prevent threats and disruption of their education. The transfer also sought to give them an opportunity for psychological treatment and counselling. Because both cases involve several defendants, it is expected that the cases will take a few years to complete. In the meantime, Raks Thai Foundation is working with agencies such as the Office of the Public Prosecutor, the Social Welfare Department, the Child Rights Protection Foundation, and the Half – Way Home organization to develop a long-term solution for the two girls.
Story 3: The Pain of Grace Atieno: AR (Mombasa)
Grace Atieno is one woman among many who have experienced the painful, hurtful and devastating effects of stigma and discrimination even from within her own family. She is not only suffering stigma and discrimination from outsiders but also from her siblings whom she helped bring up. She learnt of her HIV status four years ago and has since then been unwell on and off. She lost her first-born daughter after a long illness. She died and left Grace with a grand child who is also HIV positive.
Due to poor health she and her grandson have been constantly thrown out of one house to the other by landlords. Her neighbors, fellow tenants in Swahili houses have locked toilets and bathrooms to stop her from using them and forced her out of their neighborhood. When she insists on having them opened, the other tenants threaten to move out. The landlord fearing to lose his tenants obliges to their demands and Grace is forced to leave. The neighbors also refused to let Derek, her grandson to play with their children – he had skin infections. He could only play with Grace’s children. This traumatized the boy very much.
To crown it all, her sisters told her children of Derek’s status before she was prepared to disclose it to them and as a result two of her children left home for the streets. One of her daughters moved out of home and rented a room where she has lived for the past three years. They feared getting infected staying with Derek. Grace’s mother at one time told her to take the boy to a children’s home or to a hospital so that he could die fast. This was very painful to her. She took care of the boy herself until he passed on last month.
When Derek, died her neighbors did not come to comfort her and she stayed with the dead body from 2:00 am until the next morning not knowing what to do. She had used all her savings for the boy’s food and medicine and she did not have any money for the funeral. So she sent for me and I helped her pay for the burial space and coffin. We called other SOAN members who helped dig a grave where we laid Derek to rest. At the moment only one of her children, a daughter cares for her, she tells her mother not to disclose her status to others. She is scared and her other son is also on and off the streets.
Grace is rejected by members of her family and community. She cannot even share facilities with her neighbors and her grandson has no peace of mind as he can’t play with other children. Disclosure of HIV status leads to major disruptions in families and communities, despite its obvious advantages.
What do these stories? Through stories of Baby Joy, Grace, and the Thai girls we are able to get a glimpse of the magnitude of the pandemic. Despite all efforts put against HIV and AIDS, from the start of the epidemic, stigma and discrimination have fuelled the transmission of HIV and have greatly increased the negative impact associated with the epidemic. HIV-related stigma and discrimination continue to be manifest in every country and region of the world, creating major barriers to prevention of further infection, alleviating impact and providing adequate care, support and treatment.
The stigma associated with AIDS has silenced open discussion, both of its causes and of appropriate responses. Yet visibility and openness about AIDS are prerequisites for the successful mobilization of government, communities and individuals to respond to the epidemic. Concealment encourages denial of existence of a problem and delays urgent action. It causes people living with HIV to be seen as a ‘problem’, rather than as a solution to containing and managing the epidemic. Stigmatization associated with AIDS is underpinned by many factors, including lack of understanding of the illness, misconceptions about how HIV is transmitted, lack of access to treatment, irresponsible media reporting on the epidemic, the incurability of AIDS, and prejudice, myths and fears relating to a number of socially sensitive issues including sexuality, disease and death, and drug use.
Stigma leads to discrimination and other violations of human rights and these affect the well-being of people living with HIV in fundamental ways. In countries the world over, there are well-documented cases of people living with HIV being denied the right to health-care, work, education, and freedom of movement and even life, among others. The stigma surrounding HIV and AIDS has also impacted negatively on the lives of people living with HIV (PLWHs) and created many drawbacks in the fight against HIV and AIDS. Therefore, we cannot ignore the stigma surrounding HIV and AIDS as it has made prevention, care and management of HIV and its related condition very difficult. In order to improve the lives of PLWHs through proper support, care and treatment, we have to deal with the stigma surrounding AIDS.
Discrimination and stigma at the workplace could easily force an infected person out of a job denying him/her a livelihood. This may cause a PLWH to be angry with the self, family and the world. If people who are HIV+ (or perceive to be) are frightened of the possibility of discrimination, they will probably conceal the fact, will not be able to get treatment and will spread the virus (ILO Code of Practice, 2003).
Let us listen to the voice of Omar, a man who has lived with HIV for 14 years:
“I felt the highest level of stigma when we attended a conference for PLWHs in another country. We boarded a taxi to go to the conference venue and on the way, we passionately got into discussing HIV and AIDS. The taxi driver got interested in our conversation but the minute he learnt that all his passengers were HIV+ve, he stopped and threw us out of his car! He even refused our money …. It contained the virus!”
The principle of non-discrimination, based on a recognition of the equality of all people, is enshrined in the universal declaration of human rights and other human rights instruments that prohibit discrimination based upon race, color, gender, language, religion, political or other opinion, property, birth or other status, including having HIV, and that discrimination on the basis of actual or presumed HIV and AIDS status is prohibited by existing human rights standards. Stigmatizing and discriminatory actions violate the fundamental human rights to freedom from discrimination. Being a violation of human rights in itself discrimination directed at people living with HIV and AIDS or those believed to be infected, further violates other basic rights such as the rights to health, dignity, privacy, equality before the law, and freedom from inhuman, degrading treatment or punishment. Violations of human rights may in turn validate stigma.
Protecting the dignity of persons infected and affected by the virus and sharing medical advances with less developed countries leads to critical reduction of HIV vulnerability (Population Bulletin, 2002)
The arts can be vital in dealing with HIV and AIDS related stigma and discrimination because they have the unique ability to change attitudes, initiate interpersonal, family and community dialogue and motivate people to behave in a particular way. The target the emotions and influence the way we relate with others in a non-threatening manner. The arts can also help us cope with difficult situations.
Staging the Arts Festival in Nairobi
Treatment
As mentioned earlier, the Arts Against HIV and AIDS Festival brought together East Africans and partners from the Mekong sub-region. All the partners involved use the arts to combat disease, especially HIV and AIDS.
“The Africa-Asia InterAction epitomizes the heart and the character of the human spirit. It epitomizes the ability of human spirit to transcend diversity. It epitomizes the ability of human spirit to overcome difficulties and constraints of our regular difficulties. It epitomizes the will of all of us to be able to be successful to combat this virus and be able to live our lives in accordance to our true nature and that is part of parcel of this global family, part and parcel of this global solution to fight this global problem.” (Dr. Pat Naidoo, formerly of Rockefeller Foundation during the opening ceremony).
The theme for Festival was “Acceptance in the Face of HIV and AIDS.” It was to be primarily located in public spaces in the informal settlements of Nairobi in order to encourage debate, education, greater understanding and positive behaviour change. The aim was to ignite family and community conversation on reproductive health. Art for Action on HIV and AIDS produced innovative and experimental works of art which examined HIV and AIDS through the lens of gender, the body, the urban experience, poverty, youth, health, and life. It provided opportunities for urban youth from low-income areas to actively participate in creating and exhibiting contemporary art within their communities. These art works encouraged the youth to take positive and well informed actions in order to collectively fight HIV and AIDS. They also got an opportunity to be mentored and use the arts to earn an income.
The Art for Action Festival was made possible through implementing a number of art projects to which we now turn.
i) Memory Work
Memory work was begun by a group of HIV positive mothers in Uganda in the early 1990s. They used memory books and boxes to help disclose their positive status to their children, as well as to begin the process of future planning together. Memory boxes come in all shapes and sizes and can take the form of baskets, boxes, tins and so on. When used in the fight against HIV and AIDS, they represent a narrative that HIV+ parents may wish to leave to their children: advice, key information, pleasant and life enhancing memories and the warm feeling of love and affection. They are designed to help the millions of families affected by HIV and AIDS in Africa to cope with disease, death and grief, and to plan the children’s future. Memory boxes or books go by the generic title of “memory work.” In South Africa, the South Coast Hospice in KwaZulu Natal and the Sinomlando Project, an oral history centre at the School of Theology at the University of Natal, use memory work. In addition, HOPEHIV in partnership with the University of KwaZulu Natal, uses Memory Boxes. KwaZulu Natal volunteers are being recruited to help dying parents record their life stories and to pass on their favourite things and photographs in a Memory Box to their children after their death. These will become ‘treasures’ that give a child an identity and a sense of belonging. Manuals are created in Zulu and English and distributed to staff and volunteers, who are then trained to visit the homes of the dying and to work sensitively on ‘Memory Boxes’ with families. Through learning across nations, artistic creativity can be fired and made more responsive to societal needs.
In the popular imagination, memory work is associated with preparation for death and the celebration of life. It is a legacy for orphans, a narrative about transitioning and a link between the past, present and future. It is a communicative facility between parents and children. In contexts where treatment has not been accessible, the key messages that are communicated to children by parents living with HIV revolve around disclosure of HIV status, changes in health status as the illness progresses, the possibility of the death of the caregiver, succession planning, and information about ancestral roots and family history which is important in the process of identity formation for the child who might grow up without parents. Within the context of the availability of ARVs, however, forms of memory work have evolved to assist people living with HIV and AIDS to live positively, to hold on to life, and to celebrate life.
There are various memory products with a range of tools in response to a spectrum of needs and situations facing HIV-affected adults as well as children. Anyone who wants to work creatively with his or her story can make a memory work. Indeed, memory work might be defined as the deliberate setting up of a safe space in which to contain the telling of a life story. This space might be a room, the shade under a tree, a drawing, a memory box or book or a body map. Whatever its form, memory work is a place where remembering takes center stage.
ii) The Body Map
The body map is a big outline of the body, with lots of space for one to express oneself and one’s feelings using pictures, words and symbols. It is a memory tool with different applications and is useful for sharing and receiving support. The Body Map project for the Festival took the form of a “interview, worksho and exhibition” and twelve innovative body maps were produced and exhibited.
In making the artwork possible, participants work in pairs and trace their bodies. On these “body maps” they paint representations of the AIDS virus, symbols of personal power and areas of emotional significance. A shadow outline of their partner is included in each painting to represent the importance of support and encouragement from others. It is an opportunity to explore, record and review the ways in which an individual imagines and pictures his or her body and life. Body maps can capture the marks which experiences in life leave on our bodies (laughter lines, scars, infections, bruises, beauty marks and so on), and they can also be extended to trace and plot the paths our bodies make across life (our ancestral lines, journeys and hopes). They can be used to express how an infection flared up, how a traditional remedy helped, or a feeling held in one’s heart. In another body map, one might find a story of disclosure which gets shared among friends.
With this recognition of the power of art in mind, between July and October, AHADI facilitated a team of artists at the Korogocho Redeemed Church Support Group, two artists (Bernard Otieno and Xavier Verhoest) and one psycho-therapist, Annet Shwalbe, in putting together the body maps. Significantly, the work in Korogocho involved the use of body-maps to help people process and relate their memories, as well as link their present and future.
Here is the story of one of the participants as told in ink and brush on his body map.
“I was born in Jinja, Uganda. My family moved to Busia, Kenya when I was seven years old. There my father, our sole breadwinner, worked as a businessman criss-crossing the Kenya- Busia border everyday. I attended primary school in Busia and passed well but I could not immediately join a secondary school because my father passed away the same year. I had to re-sit my primary school education for the next two years. I was the oldest in my class!
I later joined a secondary school in Western Kenya where I sat my O levels. Though I did not pass well I landed a job as a clerk in a Mombasa based company. I worked there for three years. This is where I met my beautiful wife. I was later transferred to Nairobi. Life was good then. Come 1998 my wife was pregnant with our second born. However, she miscarried at three months. I thought this was normal and did not worry much. However, there was alarm after the third miscarriage. We went to a medical doctor. I was personally confused. I was convinced it was chira or witchcraft. “Perhaps one of my ex girlfriends was jealous of my success and had bewitched my wife”, I thought.
After consulting many doctors and now with a fifth consecutive miscarriage one doctor advised my now weak wife to seek HIV testing. I sneered at the idea; after all I was fiddle fit all this time. I remember that evening in 2003 when I came home to find my wife dull. It was not normal for me to ask her what was wrong. I thought it is one of those days she was itching to pick a quarrel over food, money and my beer. But this time she was dull and calm. She welcomed me in and immediately thrust a scribbled paper unto my face.
“You infected me. I am dying,” She shouted at me.
“What!” I shouted back
“I have HIV …I am dying …” I couldn’t wait for her to finish. I beat my wife senseless and sent her back to her home. One year later I married another young girl hoping to get a child and for sure I got a baby girl. But she died before her first birthday. Later on that year, my first wife also passed on. I was devastated. I developed bad malaria and a dry cough. I felt weak, sweating at night and coughing. I went to a government clinic and was diagnosed for tuberculosis. The doctor also advised me to go for HIV testing. I obliged and the results were positive. I cried a lot. I remembered my first wife. Now I knew why she died; why she had the miscarriage. I regretted passing blame on her. I missed her!
My life was a sham. I knew I had also infected my younger wife. Why didn’t I stick by my first wife? I knew I was to blame. I was going to die! Back home I informed my drinking partners about my status. Promptly, they ran away. They feared I would infect them. I became the laughing stock of the village. They said I was cursed! They avoided my family even my first born boy who was not infected. They advised my younger wife to run away from me. My efforts to persuade her to go for testing yielded no fruits.
At work, my colleagues avoided me. I grew weak and hopeless. I was dismissed from work on medical grounds; although I could still work. I was a lonely man. I got into drinking and smoking. I lost appetite.
One day I was listening to the radio when I heard a lady talk of her life after HIV. How she had changed by joining a Support Group. Immediately I made up my mind to find out in my neighborhood church. That’s how I got to the Gospel Redeemed Church. I met a very caring lady who told me of the Support Group and how it could help. I could wait for Thursday; the day the support group meets. I went in.. Here, I met over 45 people some single, some married, young and old, all sharing and talking about their lives. I felt at home and since then I have not looked back. I made a choice, TO LIVE.
The body map concept was pioneered by an HIV-positive Ugandan Women’s Group, NACWOLA. It was part of the larger Memory Box project aimed at preparing the sick for positive death. It sought to help the process, the fears, anxieties and feelings and to leave behind memories and identities, for their children’s future. However, with the advent of ARVS and successive herbal therapies, the concept has evolved to become a vital tool for PLWHs to communicate to the world about the disease and reduce stigma related to HIV and AIDS. It is much less about mourning and creating a legacy and more about celebrating life. TICAH, an organization based in Nairobi, also uses body maps as therapy among PLWHs in Kenya and Asia. In their publication, Our Positive Bodies: Mapping our Treatment, Sharing our Choices, TICAH presents body maps from Kenya, India and Thailand. In one body map from Kenya, Amina, a 36 year old mother of three, narrates her use of images to represent her inner self.
|
“When drawing this, I felt so overwhelmed with mixed emotions of joy, happiness, strength and sorrow. I painted my head pink, to symbolize calmness and hope, changing to red to symbolize the pain. My inner body is blue to express my sense of determination, strength and inspiration. The black outline represents my black skin and my pride of being a black woman.” (Our Positive Bodies, p. 5)
The life body silhouettes in TICAH’s body mapping project is an important way of telling the stories of coping, treatment, love and hope. It brings together body maps from workshops involving Society for AIDS Orphans Network in Kenya, Karavali Positive Women’s Network in India, and Saitharn Rak PHA Club in Thailand.
“Sometimes it is difficult to explain what one feels merely by words but through these paintings one can give information in detail and in a more entertaining way. It helps us to fight for life, rather than prepare for death.” A participant.
At the exhibition, body maps emerged as a powerful tool for learning, creating space for discussion and interaction between people, especially people with low literacy levels. HIV and AIDS was examined through the lens of gender, the body, poverty, youth, health, and life. These life experiences were shared and discussed with the public to positively contribute to the fight against stigma and discrimination. The group also used the body maps to educate their fellow PLWHs on various therapies. They drew their representation before and after the disease to showcase the remarkable progress since getting into treatment and care from loved ones.
Both at the GoDown exhibition and the one-day street art display, PLWHs had a chance to express emotions, and feelings they had been hiding since they discovered they were HIV positive. As the public streamed in, silently reading through every sentence and looking at the seemingly simple drawings they reflected on the pandemic and its impact on the society, some empathized with them, some cried, others were overwhelmed by feelings of guilt for neglecting the people infected. Emotions were intense and confusing but there was only one call: It is time for action on HIV and AIDS related stigma and discrimination. It was time to turn the tide.
In order to help those who may want to use this art form for therapy, we list below the steps followed by the trainers in developing the body maps at Korogocho. These steps are a general guide and artists can bring more innovations into them. We have retained the language of the trainers.
• get into pairs of two. Colours are chosen and each of the partner will use the same colour but in reverse (e.g, main body in blue and shade in yellow and for the partner main body in yellow and shade in blue );
• draw carefully around partner’s body with a black marker pen on canvas;
• choose a colour to represent you and paint around the outline of your body;
• prepare a colour with a lot of meaning for people. Ink up your hands and feet and stamp them where your hands and feet would be. This can be a very ritualistic moment – when people are putting their hands and feet in the colour and washing them afterwards;
• choose another colour and shade your partner wherever they are; outside the outline of your body;
• close your eyes and experience where in your body you feel the best or the strongest. Mark this place on your body map with an X by pencil;
• close your eyes again and try to think or “ see” a symbol that represents the best parts of you, your strength, and your special ways. Paint or draw this symbol onto a piece of paper and then again onto your power point (the X you marked in pencil on the body map);
• You can transform this part in a magical moment with introspection and when one retreats into their inner selves. . The presence of therapist can be very helpful in creating a time-out in order for participants to feel deeper their bodies and to choose the part of the body they wanted to work with. The challenge is how to translate it into a drawing/painting on a piece of paper/canvas;
• Choose a colour and paint the background of your body map;
• On a loose blank page, draw a portrait of your partner;
• play a game: take all the drawings, put them on the floor and ask everyone to choose his/her portrait;
• with the assistance of the artist, paint these portraits on the body map or stick the original portrait on paper / canvas;
• write your name, where you were born and when on the canvas;
• think up a slogan that explains you how you would like to be in the world or what you believe in. Write this clearly on your body map;
• notice all the marks, birthmarks, beauty marks, scars, stretch marks, moles, pimples, rashes and wrinkles, wisdoms lines, on your body. Draw these marks onto your body in the correct places. Next to the mark, write something about how it came to be there;
• feel where else in your body, maybe deep down under the skin, you have strong feelings, maybe good feelings or maybe painful ones. Mark these places, using pictures or maybe just colour and words which explain a little bit about that feeling;
• outside your body, in one of the corners of the piece of paper, draw a symbol of where you came from that marks the beginning of a journey. This can be a village, a culture, a heritage, a country, an emotion. Add your date of birth;
• on the opposite corner of the piece of paper, draw a symbol that relates to where you are going – your goal, dream, vision. You are on a journey and your body is the vehicle. Join where you come from and where you are going in some way through your body;
• this is your body map so feel free to add anything else you like;
• now that your body map is complete, share your story with your partner or a friend;
• how do you feel about your body map?
Once the body map has been completed, it can be an important tool for interpersonal and community dialogue. The therapy therefore occurs at two levels – in the process of painting and introspection and also during the conversations around the completed work.
Prevention
i) Art pieces made out of condoms
Because conversations related to sex are taboo, it has become quite difficult to mobilize individuals and communities in HIV prevention efforts in many communities in Africa and Asia. But we know also that having protected sex all the time is one way in which transmission of HIV could be contained, in addition to abstinence and faithfulness to an uninfected sexual partner. The arts can be marshalled to address prevention measures. The demystification of the condom is an important way of opening discussion on sexuality in households and communities..
Art created out of condoms may play an important role in de-stigmatizing the condom and making it a facility that can contribute in the prevention of the AIDS virus.It can be both liberating for the individual artist as well as the audience. In researching sexuality and safer sex, the artist’s sensibility is aroused to address a health issue in a social context. That is what Adriana Bertini did: she broke with tradition, taboos and offered a place for the public to discuss sexuality through the image of a condom dress. That experience was relieved in Kenya during the Art for Action against HIV and AIDS. In this section, we reproduce an interview with designer Juliet Isaka, who put together the condom dresses for the Festival. The interview was conducted by Otieno Wandei, under the auspices of AHADI.
Otieno: How did you get into the fashion industry?
Juliet: In 2002 I got an opportunity to exhibit my work at the Smirnoff Awards where my clothes made it to the semi finals; it was quite a break because we had to do our creations, drawing inspirations from nature and not limited to using cloth. I later joined Kenyatta University and I have been designing for the Kenyatta University Fashion Week as I complete my Masters in Textile and Clothing Design there.
Otieno: Tell us about the condom dress
Juliet: Well, the first time I was asked by AHADI to design a condom dress I was impressed because I saw an opportunity to work with a different medium to create clothes. It was not such a big task given the fact that for the Smirnoff Awards we worked with different materials to create clothes. Personally, I did not think it was so sensitive because condoms are manufactured for people and to create clothes with them would be ideal. When I went home with the condoms and told my husband that I was designing a condom dress he was surprised and was eager to see what it will look like eventually. My family was not very offended by me making the dress and as I worked from home one of my neighbours came in and her first reaction was that they are beads or pieces of wood! When she looked closely she was surprised that condoms can actually make a dress. For me, it was just a material but of course I was aware of the negative connotation that is attached to condom use…we are coming from a conservative tradition that views sex as taboo and as such the condom is even seldom mentioned.
Otieno: How did you make the dresses?
Juliet: It was very tedious. As you are aware the latex condoms have been lubricated and scented…it was indeed very hard to remove completely the lubricant and get rid of the scent. We had to wipe, wash and dry them before we could start using them. I had done some sketches previously and my concern was to make as hybrid as possible the outcome, since we were working based on models from Brazil by Adriana Bertini, who has worked extensively with condoms as a medium for communication. While we were not able to dye the condoms and have a variety of colours we were able to create some very unique pieces. They have been inspired by fish scales and frills and I have been able to create a sundress, sleeveless blouse and a strap dress. Thus to some extent the limitation in itself was a blessing in disguise. We also used African fabric as the basis of the creation.
Otieno: Does the condom dress create an opportunity for people to discuss condoms and safer sex?
Juliet: Well, to some extent and it is as diverse as the people viewing it. I have heard people say that it’s disgusting and to them the condom dress is to take the whole condom issue too far. But one of my friends was able to even touch it and she liked the whole idea and I was able to talk to her about condoms. I think the condom dress will help us break the silence around condoms and even help demystify sex.
Otieno: What is the message you are passing with the condom dress?
Juliet: What I am trying to say through the creations is that since clothes are everyday things then we should endeavour to make condoms as basic as possible. We should not stigmatize people using condoms just like we tolerate people who wear differently from us. Just like our clothing passes a message so does the use of the condom. It passes the message of love, care and protection.
Juliet was inspired by Adriana Bertini’s creation which have been exhibited the world over. Bertini transforms expired or defective condoms into raw material to be used to make pieces of art. These frames, sculptures, and brightly colored women’s dresses are intended to raise awareness and inspire reflection about condom use. On another level, Bertini hopes that, by using the material at the centre of effort to prevent HIV and AIDS to create something new, she can inspire reflection, foster discussion, and challenge taboos.
(ii) Solidarity Dance
A professional dancer and a dance psychotherapist worked for four weeks with seven children living in the Shangilia Mtoto wa Afrika home in Kangemi. During this time, the two dancers used movement as a tool for letting the children tell their personal stories and to do a contemporary choreography. The idea behind the choreography was to endorse the values of solidarity, love and care towards PLWHs. The choreography was made of movements identified by the children. Each movement talked about their lives and their own experiences. It crossed the boundaries of choreographies and went deeper in the experiences that orphans and vulnerable children have around HIV and AIDS. Again, we present the process followed by the trainers in order to get a glimpse of what transpired between the artists.
1. First week: Team building
The choreography started with trust-building exercises, where skills and interest was shown. Trust exercise included closing eyes and being guided through touch and voice. The group started with 16 children but by the end of the week there were seven children who had been selected. Once the group was formed, the dancers and the children started getting to know each other and sharing their life stories. The life stories were translated into movement and each child picked a part and developed a movement that represented a significant moment in their lives. The seven movements formed the raw material for the first part of the choreography. The process started a dialogue between the children and the professional dancers. The dancers visited Shangilia to get to know the status of the children as well as the type of information on HIV and AIDS they may have received.
2. Second week: Knowledge of HIV and AIDS
The trainer showed a video with the objective of explaining to the children what contemporary dance is all about. Here the children learnt that contemporary dance is a mix of their own expressions, acting and doing acrobatics. The children continued practising the movements of their lives, in pairs. When they performed together, the choreography became synchronised.
The trainers visited the Shangilia Centre to learn more about the type of information the children receive on HIV and AIDS and to share the personal stories of the children. They found out that it is possible that the children have at least a parent that is currently sick and most likely HIV positive. The trainer had asked the day before for drawings that told the story of a person that has HIV. The drawings set the basis for the discussion. The following statements were made by the children:
• People can get HIV by having unprotected sex and through direct contact of blood and other bodily fluids, when you get circumcised or in an accident where there are cuts and blood;
• You cannot know, by looking, if somebody has the AIDS virus inside their body;
• The only way to find out if someone is HIV positive is when the person is very sick. People do not disclose their status. Most of the time they say they are sick from something else, like malaria or TB;
• The only safe sex is through abstinence;
• People cannot get HIV through hugging, holding hands and kissing; sharing the same clothes, plates or cups; using the same toilet; from insect bites; or witchcraft.
The children showed basic knowledge about HIV and AIDS. Asked what they would do if they discovered that someone they care for is HIV positive, they were divided: half of the children said that they would run away and the other half said they would take care of the person. After debating these decisions, all the children said that they would care for people who are sick and people who have AIDS. They would accept them and care for them. Apparently, rejection of people who are HIV positive is a consequence of lack of sufficient knowledge on mode of transmission and the power of compassion.
(iii) Community Murals
This project brought together artists, youth, PLWH, and HIV and AIDS educators to create large murals about their lives and HIV and AIDS. These murals enabled individuals to look at and represent their immediate surroundings and be exposed to messages about HIV and AIDS.
iv) Photography Project
The photographic project created a visual space that bridges poverty, youth realities and hope, while speaking about HIV and AIDS. Inspired by the Shootback project organised in 1999 by Mathare Youth Sports Association (MYSA), the project enabled leading photographers working in Kenya to conduct photographic workshops for urban youth. At the end of the project, AHADI felt that photography should be used to bring hope to the people and not to shock them about the effects of the pandemic.
v) Dance and Puppetry
There was a deliberate effort to use performing arts (dance, theatre and puppetry) with the visual arts in order to transcend constructed boundaries with regard to class, race and gender. These multidisciplinary teams used multi-media as a metaphor for the diversity of views and voices in the struggle against HIV and AIDS. Students from Starehe Boys Centre played instruments in solidarity with PLWH and led a demonstration in the streets of Nairobi. At the National Theatre, there were dances, poetry, drama and skits from high school students. All these activities were meant to address the issue of stigma and discrimination and to showcase the power of the arts in dealing with the AIDS pandemic.
Conclusion
From the above discussion, it is evident that the arts have an important role to play in ensuring health for all. They can provide advocacy tools as well as strategies for effective behaviour change communication. Because reproductive health relates to matters of emotions and inner self, it is better tackled by approaches that are both cognitive and affective, providing key information and knowledge and simultaneously allowing for emotional connection. The utilisation of art in the fight against HIV and AIDS in Africa is urgent because of the devastating effects of the pandemic on families, institutions and communities. Medical approaches to HIV and AIDS campaigns are being enhanced and deepened through deliberate incorporation of social and cultural dimensions. Awareness creation, increasing levels of knowledge and understanding and influencing behaviour are tasks that can be undertaken effectively through the arts. In order for the arts to situate themselves strategically to deal with the myriad of problems confronting the African continent, they need to be recognized by all sectors of the economy and buttressed by an elaborate national policy. The Ministry of Health, for example, needs to invest in the arts so that they can effectively help in implementing its function of promoting public health. The incorporation of the arts in health promotion should not be incidental but deliberate. Funding organizations, the public sector and the government ought to support the arts not only because they represent human creativity and our appreciation of beauty but also because of their values as tools for social transformation.
Notes
1 The East African partners included Women Fighting AIDS in Kenya (WOFAK), Kibera Community Self Help (KICOSHEP), Trust for Indigenous Culture and Health (TICAH), Shangilia Mtoto wa Afrika, Twaweza Communications, Save a Life Clinic, SOAN, Faraja Trust (Tanzania), THETA (Uganda), TAWG (Tanzania). Partners in the Mekong sub-region which were coordinated by Raks Thai Foundation and were drawn from Thailand, Cambodia, Vietnam, China, Laos. The organizations constituted themselves as an Africa-Asia InterAction on HIV and AIDS in order to share intra- and inter-regional learning experiences through workshops, visits and project interventions. They also took participated in global conferences such as ICASA 2005 in Abuja, and the 2006 AIDS Conference in Toronto.
References
Macgoye, Marjorie. Chira. Nairobi: EAEP, 1997.
Memela, Sandile. Flowers of the Nation. Scottsville: University of KwaZulu Natal Press, 2005.
Mwangi, Meja. The Last Plague. Nairobi: EAEP, 2000.
Ogude, J. & Joyce Nyairo. (eds) Urban Legends, Colonial Myths: Popular Culture and Literature in East Africa. Trenton, New Jersey: Africa World Press, 2007.
Pillay, Yegan. ‘Storytelling as Psychological intervention for AIDS orphans in Africa.’ In Singhal A. & Stephen Howard Eds. The Children of Africa Confront AIDS. Athens: Ohio University Research in International Studies Africa Series No. 80.
Singhal, Arvind & Everett Rogers. Combating AIDS: Communication Strategies in Action. London: Sage Publications,2003.
Trust for Indigenous Culture and Health (TICAH). Our Positive Bodies: Mapping our Treatment, Sharing our Choices. Nairobi, 2006.
Websites:
Morna Janine: http://www.awcfs.org
Obom-Egbulem Kingsley, Nigeria-AIDS eForum. http://www.nigeria-aids.org
ahadi_talk 