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Sophie Dilmitis
30 years old
HIV/AIDS Coordinator, World YWCA
Zimbabwe

>>Available in PDF

In 2001 Sophie Dilmitis founded Choose Life, where she delivered comprehensive presentations on HIV/AIDS to over 7500 pupils in 30 schools over a five year period. Based in Zimbabwe, she facilitated presentations on HIV awareness, positive living, and workshops to private, community, and government sectors and assisted young positive people in forming their own organizations and youth prevention programmes. In 2003 she ran a weekly column called Factor Positive, for which she won the Auxillia Chimusoro Award for excellence in media reporting. In 2004 Sophie coordinated the reporting team at the 4th European Youth Conference for HIV-positive youth. Living with HIV for 12 years, Sophie has facilitated workshops on stigma and discrimination, disclosure, self-empowerment, and capacity building, leading groups of positive youth through a process of self-examination, goal setting, and personal growth. Sophie is currently based in Geneva and working as the HIV/AIDS coordinator for the World YWCA.

Jennifer Kidwell, IWHC: How did you get involved in the struggle for women's and young people's rights?

Sophie Dilmitis: In 1999, receiving an HIV-positive diagnosis was like receiving a death sentence. The complete lack of information and knowledge available left me ready to give up. It was only with strong family support that I gathered information on HIV and AIDS. I communicated with specialists all over the world, read every publication available, and spoke to every experienced HIV-positive person I could speak to. 

Attending the 13th International AIDS Conference in Durban 2000 changed my life. The information I received from the lecturers and HIV-positive people, the positive attitudes, and the vast information which suddenly became available to me, sent me back to Zimbabwe with enthusiasm to take up this challenge, in an open and public manner, breaking the silence that surrounds HIV and AIDS.

I disclosed my HIV status with a series of newspaper articles and radio interviews. Apart from giving talks to support groups, management, and staff of many companies, I began talking to youth in schools. More and more schools requested me to address their students, class by class. In February 2002, Choose Life was registered, according to the laws in Zimbabwe, as The Choose Life Trust. Over a five year period, comprehensive sexual education and HIV and AIDS awareness was implemented to over 7500 young people in over 30 schools throughout Zimbabwe. At the beginning of 2004, I became more involved in building the capacity of other young HIV-positive people—locally, regionally and internationally.

JK: What inspired you to start Choose Life?

SD: I would love to say that helping others drove and inspired me but the truth is that I became involved in HIV and AIDS and in women's and young people's rights because I am HIV-positive and I saw the needs that existed. In the process I was not only assisting others but I think I was coming to terms with my own HIV status. Even though it is tiring and very draining to work in HIV, especially when you are HIV-positive, the support I receive and being able to connect with people on such a deep level makes it worth it!

Once I saw the yawning gap between what young people, especially young women, needed to know and what they were being given I was even more motivated to give them tools that they could access and use to protect themselves from infection. I wanted them to have comprehensive information and education that I never had about HIV and AIDS. There was absolutely no information around about HIV and AIDS when I was first diagnosed. I remember going from bookshop to bookshop in Harare trying to find reading material and there was absolutely no information available. And I thought, who better to share information with them and talk about what it would be like to live with HIV than someone who is young, HIV-positive, and not ashamed or afraid to talk about it. I wanted to give HIV a face, making it realistic and something that young people could relate to. I did not want them to think 'this will never happen to me' like I did! I also wanted other young infected people to know that being HIV-positive did not have to be a shameful thing and that there are many things that you can do to prolong your life, even without access to antiretrovirals. 

JK: How do you feel that the work of Choose Life has changed young people's lives, either in specific instances or in general?

SD: Choose Life reinforced positive change, urging young people to take responsibility for their actions and live healthy, positive lives, irrespective of their HIV status. All information was realistic, youth-friendly, and created for infected/affected youths by their peers. Choose Life created a youth-friendly space where young people felt safe enough to discuss issues around sex, sexuality and HIV and AIDS with someone who was comfortable with the discussion. 

Choose Life made a difference through education. Knowledge can be passed on, thereby conquering the fear, ignorance, and silence that surround HIV and AIDS. Knowledge, accompanied by young people individually and collectively talking about changing their behavior and receiving support from their community institutions can make a difference. 

Choose Life offered a holistic programme, addressing many issues around HIV and AIDS such as who is at risk, how HIV causes AIDS, myths and misconceptions, counselling and testing, personalised disclosure, coping with HIV and AIDS as an infected young woman, antiretrovirals, nutrition, and prevention.

The first time I heard about HIV I was a 15-year-old student. A health care worker spoke to my class about sex and AIDS. 'Don't sleep around,' she said, 'or you will contract HIV'. I left the room thinking that will never happen to me. I am not one of those people and I don't sleep around.

Young people are often told not to sleep around. In fact, the attempts at managing and controlling young people's sexuality by older people who have perhaps not examined theirs in great depth is commonly mistaken for public health education. It would have been more useful for a vulnerable 15-year-old to hear that having unprotected penetrative sex, even just once, exposes you to HIV and other sexually transmitted infections. People need factual information, not moral exhortations.

Young people are not involved in the creation and implementation of educational programs that are for them and this is a common mistake that continues to be made globally. Young voices need to be heard on issues about sex, sexuality and gender inequalities. Youth need education, knowledge on HIV and AIDS, sexual and reproductive health, skills to keep them HIV-negative, and attitudinal change to achieve behavior change.

JK: What do you see as major challenges facing young people in Zimbabwe
today? What about greatest opportunities?

SD: I am deeply concerned about young people in Zimbabwe. Due to the current instability and the economic situation, HIV and AIDS, youth awareness and youth prevention programs have not been a priority.

Our future generation is not being looked after or safeguarded. Youth are not aware of what their sexual and reproductive rights are. They are subjected to abuse and are vulnerable.

As a consequence to the economic situation there is an increase in poverty and mortality rates due to a combination of AIDS and poor diet, thus leaving young people orphaned without guidance from either parents or teachers, since they are not able to afford the school fees. These factors lead to children being prostituted, which in turn may lead to STDs and HIV infection.

Youth today, in order to effect needed behaviour changes and so much more, need

• to stay in school and receive an education that is of a high standard;
• to know how their bodies function and be treated with respect;
• to be able to access information on their sexual health and information on HIV and AIDS, including knowledge on how to prevent contracting the virus and how to prevent further infections;
• to realistically assess risks associated with sexual activity - implicit in this the right to enjoy their sexual and reproductive health and rights;
• to participate actively in all aspects of youth-orientated prevention campaigns;
• to live within a legal framework that will protect them and guarantee that they will be able to follow through with decisions that they make with regard to their sexual and reproductive health;
• the opportunity to examine difficult issues surrounding HIV and AIDS, within a caring and non-judgmental environment that will look at reality and harm reduction rather than dogma which reduce the world to simplistic right and wrong.

JK: What do you think are some of the most important issues to address in order to promote and protect the health and rights of young people –especially young girls?

SD: This is a difficult question to answer. How does one prioritize one issue over another? When it comes to issues that affect the rights of young people, especially young women, so much still needs to be done. All strategies relating to HIV prevention must be expanded to protect women and girls' sexual and reproductive rights, especially

• involving women, especially young and positive women, in interventions and programmes that directly affect them, including those which address protection against all forms of violence, stigma and discrimination, HIV infection and other STIs—from creation to implementation;
• providing access to appropriate, comprehensive, scientific ,and evidenced-based prevention information;
• promoting prevention messages that work for young women and address young women's specificities;
• ensuring that there are accountable, youth-friendly, women-friendly, and HIV-positive-friendly health care services
• supporting development of and demanding governments ensure that women have access to female-controlled preventative methods such as microbicides (when they become available) and female condoms;
• supporting access to Post-Exposure Prophylaxis (PEP) for all survivors of sexual violence; 
• taking a stand against large commercial interests on issues such as patents, privatisation, and liberalisation, in the interests of the public, especially regarding women accessing medication;
• ensuring non-judgmental training on relationships, negotiation skills, assertiveness, and communication for young women as part of life skills training programmes;
• upholding legislation which enforces women's health and human rights at all levels, including property and inheritance rights of women and girls;
• working to eradicate stigma and discrimination against women, especially HIV-positive women.

These privileges are available to just a few women on this planet today, but an injury to one is an injury to all and a privilege not shared is not worth having.

To lower our current HIV infection rate, we need to work on the individual, the society, and the environment simultaneously. If a young girl is being abused, it is important for her to know her rights. Having this knowledge is useless if her family and community don't support her in reporting the incident, and if the person responsible is not held accountable by law.

Changes must be made in response to a real need and as a result of social dialogue, which includes the voices of young women. We must design programmes and policies that give a voice to young women, and if this ruffles the feathers of the status quo, then so be it. The cost of not doing so will be far, far greater.

JK: How can activists, policymakers, different groups work together to bring
young people to the table?

SD: When I first started working in HIV I would introduce myself as a young person living with HIV, but my youth seems to have gradually been replaced by something less easily defined that comes with a growing number of grey hairs I am torn between covering up or appreciating. So now I introduce myself as an HIV-positive youth ally. I have seen the creativity and energy that young people have in playing a determining role in preventing further HIV infections, when they are given the opportunity and are properly guided and resourced. 

The truth is that it is not always easy to involve young people at decision-making tables. Some adults believe that young people do not have the credentials (in terms of PhDs, for example) to sit at policy-making tables and sometimes this is the case. But what they do bring to the table is life experience of what it is like to be young and the issues that they themselves are dealing with. I don't see how any programmes can call themselves "youth-friendly" if they do not involve young people from their inception to their implementation. My advice is that young people (and this is not specific to young people) need to be given information and education about policy-making processes, so that their capacity is built up, so that they do not feel intimidated by not knowing the jargon that is used and so that they can actively participate in decision- and policy-making. Organizations like the Youth Coalition, AWID, ICW and others are doing this work with young people and it is vital! If young people do not understand policy documents, how are they to be meaningfully involved?

JK: Do you have positive examples from your professional or personal
experience in which both dialogue and programming have achieved meaningful youth participation or leadership?  What was effective about these particular examples? 

SD: The World YWCA launched a book called "If I kept it to myself" at the 2006 International AIDS Conference (IAC) that profiles 26 young women who have displayed exceptional leadership in the response to HIV and AIDS. In it there are many examples of experiences in which both dialogue and programming have achieved meaningful youth participation and leadership.

JK: What are your dreams for the future? Can you describe your vision of an
ideal or better world?

SD: My dreams for the future? I always find this question difficult to answer, as my greatest challenge in life (at the moment anyway) is focusing on the present and enjoying or dealing with the moment in which I find myself. I really have no idea where I am going to be a year from now or who I am going to be. Life changes so quickly that planning ahead never works out quite the way I had hoped. I do however know that I would like to continue studying, as this is something that I never did. I enjoy writing so maybe I will study journalism. Writing can be a powerful medium for connecting with people and it is a wonderful way for me to take a break from talking—which is something you do a lot when you take on the role of activist. 

An ideal world for me would be one where there is no poverty, where people respect each other, where campaigns and educational interventions place the culture of their beneficiaries at the center of their conceptual core. Where the human wrongs become human rights. Where women have access to and can enjoy their sexual and reproductive health and rights, where governments and politicians serve the people and have the community's best interests at heart. Where people have access to treatment, care, and support. There will always be something that people will die of, but people should be allowed to live and die with love and dignity.

I would like to live in a world where those who have been traditionally silenced and marginalized have a voice, are listened to and taken seriously. I would like to see promises made kept. I would like to see policies and programmes implemented and important documents like UNGASS not remain just words on paper that become a mockery of all the work that is being done today. We still have a long way to go but AIDS is forcing us to address these issues and we must not give up hope.

The Reverend Martin Luther King, Junior once wrote that "the ultimate measure of humanity is not where it stands in the time of comfort but where it stands in the time of challenge, crisis, and tragedy." These are times of crisis: humankind has failed to adequately address the gross social inequities that continue to divide us and make possible the growing disharmony between the planet and its human population. I think it is in times like these that not only our kindness and compassion are on trial but our basic viability as a species.

JK: How did you first come into contact with IWHC?

SD: In 2003 the Youth Coalition (YC), in partnership with Youth Against AIDS Network (YAAN), facilitated an advocacy workshop around sexual and reproductive health and rights in Lusaka, Zambia. As a follow-up to that meeting, a group of 12 young people from across Africa were reunited in Senegal to strategize on developing an advocacy network. While developing and launching this network, we also attended the Economic Commission for Africa (ECA), taking place there simultaneously. That was where I first met Zonny Woods [Senior Advisor for International Policy, IWHC], who stepped in to brief us on specific policies so that we would be able to follow what was happening—
some of us had never taken part in a UN meeting before. This is an example of the youth education and empowerment which is so necessary.

I have become better acquainted with IWHC through the World YWCA. I joined the World YWCA in May 2006. The World YWCA is involved in many policies, programmes, and interventions from their inception to their implementation. For example, The Centre for Health and Gender Equity (CHANGE), IWHC, the World YWCA, and Action Aid Uganda, among others, recently launched the Prevention Now! Campaign, an international grassroots advocacy effort to dramatically expand access to female condoms and other existing prevention methods by demanding increased government and donor investment. The World YWCA also signed on to, and supports, the Compact initiated by IWHC.

At the IAC in Toronto, I was part of a panel of women that spoke out about human rights violations. The session was called "In Her Own Words" and was co-sponsored by IWHC, along with the International Community of Women Living with HIV and AIDS (ICW), and the Association for Women's Rights in Development (AWID).