’Your future gets stuck’! exploring the communication disconnects in health communication By Thomas Tufte, Ph.D, Professor Roskilde University, Denmark Presented at Saint Augustine University, Mwanza, 18 March 2010

Today’s Presentation: 1. Reporting from a Media Ethnography 2. Discuss policy implications  Establishing broader contexts of analysis to understand health(HIV/AIDS) Communication (in Africa)  Methodology: Essay Study as part of overall methodology  Identifying Communication Disconnects & Communication Challenges

Cultural Studies (I)  Latin American Tradition (J.Martin- Barbero, N.García-Canclini, J.González, R.Ortiz + Paulo Freire)  (mediated) Popular Culture in Everyday Life – i.e. telenovelas  Enhancing Cultural Citizenship  A Potential for Change in Drama and Storytelling

Cultural Studies (II)  Historical formation of social and cultural practices  Historical formation of audiences  The limitations of mass media in achieving behaviour change

HIV/AIDS Communication (Health Communication)  Inherited strategies from family planning ( Diffusion, persuasion, effects, behaviour  Social marketing )  Slow development of genuine strategies  Limitations include Short-term Short-term Limited formative research Limited formative research Simplified message transmission Simplified message transmission Inadequate monitoring and evaluation Inadequate monitoring and evaluation

A Science and a Practice on the Move?  Bridging diffusion and behaviour change with empowerment and participation  Bridging mostly in words, less in action  Community based strategies using media  The Comm Discipline Challenged? Our response to development challenges Our response to development challenges How we feed theory into policy & pratice How we feed theory into policy & pratice

The need for Qualitative Audience Studies  Audience ethnography  Micro-studies of social and cultural practices  Contexts of histories & policies, institutions and discursive environments

Youth in Grahamstown  A micro-cosmos of South Africa  inhabitants  5 schools selected  124 essays written in 11th grade  10 focus-group discussions (60 students)  A close-up study of 18 youth: Photoethnography Photoethnography Participant Observation Participant Observation 3 x Individual Interviews with each 3 x Individual Interviews with each Mini KAP-study Mini KAP-study

Essay Task  124 students, year old, 5 different secondary schools  Essays written based on the following statement: HIV/AIDS affects each and every one of us, no matter how ’special’ we think we are, and is rapidly becoming a part of everyone’s reality. Drawing on own experience, to what degree do you think this statement is true, and why?’

Understanding the pandemic..  ’to understand the HIV pandemic in Africa is to understand how people who live with it explain it, or rather how they construct schemes of risk assessment in the face of it. It is by listening to the ’stories’ that we can understand the context in which the pandemic is constructed, including factors that may promote or constrain behaviour change (Rugalema 2004: 192)

Township girl (1)  HIV/ Aids is the killer in our days, especially to our youth. People of Rhini are just making fun of people who are living with HIV/AIDS, that is why we have funerals every weekend. It’s also one of the reason that people who are HIV positive don’t come forward, they end up turning to alcohol and drugs. Even in hospitals once you are told by the doctor that you are HIV positive, they told everyone that you are HIV positive, before you even tell your own family. (…) People always think that if they tell their families about their status, they would not be accepted. There is a girl that I know who is HIV positive. The first person she told was her school Principal. The principal told her teachers and the teachers told the students. No one wanted to be associated with this girl. They treated her so badly that she quite school. The way that they where talking to her as if she was not a human being (NB8-F).

Township girl (2) Close by to my house there is a little girl who is HIV positive, at her home it’s only her sister who knows about the young girl’s status. They are both scared that if they tell their parents, they will chase her away from home. Her sister told me, and asked if I could keep it a secret. In clinics people who are HIV positive are being treated badly. Even if you ask them to get you some water, they will shout at you for no reason. Even if you are still in bad condition to be discharged, they will tell you that you need to go home because there’s no place for you here.You can just go home and die there. If your family knows your status they wont take you to the doctor or hospital, only when your situation is worsened they will take you to TEMBA SANTA HOSPITAL ( TB Hospital) and say you had TB. Even at your funeral they will just say you died of TB. I think if we can learn to be more open about AIDS, we can defeat it (NB9-F). Close by to my house there is a little girl who is HIV positive, at her home it’s only her sister who knows about the young girl’s status. They are both scared that if they tell their parents, they will chase her away from home. Her sister told me, and asked if I could keep it a secret. In clinics people who are HIV positive are being treated badly. Even if you ask them to get you some water, they will shout at you for no reason. Even if you are still in bad condition to be discharged, they will tell you that you need to go home because there’s no place for you here.You can just go home and die there. If your family knows your status they wont take you to the doctor or hospital, only when your situation is worsened they will take you to TEMBA SANTA HOSPITAL ( TB Hospital) and say you had TB. Even at your funeral they will just say you died of TB. I think if we can learn to be more open about AIDS, we can defeat it (NB9-F).

Issues appearing in the texts…  Stigma – ill treatment in hospitals, silence or gossip in the community, lack of disclosure.  Fear/Identities at Risk – healthy youth with a future. Ontological insecurity. The future is getting stuck!  Stress and Denial – ’dont care’ attitude. Some are constructing an ’other’ who is more at risk. Individual and collective denial. Alcoholism, violence.  Gender Inequality – men decide, but blame women, prostitution.

Youth Perceptions  Massive recognition of HIV/AIDS being a big problem, in the community and in the country: ITS REAL!  Often spoken of as a ’killer disease’ – seen as a death sentence  A manifest expression of fear to get the virus

Modes of Transmission  They demonstrate high levels of knowledge about transmission  Very stereotype and gendered accusations (men accusing women to bear the largest responsibility for carelessness in protection and in spread of virus – most in lowest income schools)

 A clear understanding of how to prevent HIV. All key messages come through (slogan-like): ’the great thing is to talk about it’ ’the great thing is to talk about it’ ’And to the youth,they must stick to one partner and be protected, the condoms are there for safe sex’ ’And to the youth,they must stick to one partner and be protected, the condoms are there for safe sex’ ’Use a condom because HIV/AIDS is a killer disease’ ’Use a condom because HIV/AIDS is a killer disease’ ’I think the solution is to condomize’ ’I think the solution is to condomize’ ’Message: Please, ’don’t compromise, condomize, people’ ’Message: Please, ’don’t compromise, condomize, people’ ’AIDS kills our people so we must fight it’ ’AIDS kills our people so we must fight it’ ’don’t be shy, talk about it, eat good food, especially fruit and vegetables, and drink juice, not alcohol’ ’don’t be shy, talk about it, eat good food, especially fruit and vegetables, and drink juice, not alcohol’ ’Wrap it, or Zip it’ ’Wrap it, or Zip it’ Knowing your ABC..

Living with HIV & AIDS  Many (esp from low income schools) express knowing someone or know of someone having HIV, AIDS or having died of AIDS  Many of the students from low income schools have been to funerals (characterized by lack of openess about what the person died of)

The Burden of Stigma  Statements show a persistent pattern of reaction amongst community members: PLWHAs or just people suspected of being positive seem to experience social marginalization, isolation and ill treatment by other community members: If you talk about your status, you live for a long time. When you don’t talk about it, you always think about it and you suffer in the process and you die. What I don’t like is when the community treats people living with HIV/AIDS badly. Instead of welcoming them from your house you chase them away. Other families they start to dislike you when you are HIV+. Even if you where drinking with a jug, people who are not positive they won’t use it. People who are living with HIV/AIDS, we need to support them so that they wont think about their status. When someone is HIV/AIDS I urge people not to make fun of people who are HIV+ If you talk about your status, you live for a long time. When you don’t talk about it, you always think about it and you suffer in the process and you die. What I don’t like is when the community treats people living with HIV/AIDS badly. Instead of welcoming them from your house you chase them away. Other families they start to dislike you when you are HIV+. Even if you where drinking with a jug, people who are not positive they won’t use it. People who are living with HIV/AIDS, we need to support them so that they wont think about their status. When someone is HIV/AIDS I urge people not to make fun of people who are HIV+

Living in Silence  Stigma leading to no disclosure until when close to dying  Its very difficult to talk openly about HIV+ status  Many essays tell stories about strong emotional reaction and fatalistic behaviour amongst PLWHA, from deliberate intentions to spread the virus to suicide

Inclined to Action  Need for more care and support  Need for change of individual sexual practices  Only a few (high income) students seem to acknowledge a need to fight contextual aspects such as poverty

Comm.Challenges 1. To tackle issues as stigma, stigma and stigma 2.To tackle issues as fear and denial 3.To address underlying social, cultural, political, economic and spiritual contexts 4.To build trust using media language 5. To ensure joint efforts at community level

Communication Disconnect (1)  Discrepancy between immensity of HIV/AIDS problem and the thundering silence about it.  Its about stigma >>> invisibility of people  Absence of voice

Communication Challenge (1)  Rights, Representation and Public Sphere Right to Communicate: VOICE Right to Communicate: VOICE Visibility in the media and other public spheres Visibility in the media and other public spheres Understand better the mechanisms of today’s public sphere Understand better the mechanisms of today’s public sphere Create a speech environment on HIV/AIDS Create a speech environment on HIV/AIDS

Communication Disconnect (2)  A lack of connection between the media language used (genres, aesthetics, format, language) and the culturally appropriate and lived experiences of the audiences

Communication Challenge (2)  Popular Culture and Cultural Citizenship Produce culturally appropriate content Produce culturally appropriate content Enhance cultural citizenship to support citizen identity Enhance cultural citizenship to support citizen identity

Communication Disconnect (3)  The immense contradiction between solutions proposed in campaigns and the actual need for much more far-reaching solutions

Communication Challenge (3)  Power Struggles and Change Processes Address unequal power relations Address unequal power relations Broaden the problem definition from a health problem to a development problem Broaden the problem definition from a health problem to a development problem Communicate for social change…!

Implications for policy and practice  From BCC to CFSC implies increased focus on social critique and social action  Civil society driven media platforms?  Accountability: downward and upward  How can youth engage further? Participatiion, public debate..