Final Report

Friday, 18 August -- Ecumenical Advocacy Alliance Video "Sophie's Story"

Previous Days

Thursday, August 10--Sophie’s thoughts before the conference begins

Friday, August 11 -- Day One: Pre-Ecumenical Conference

Saturday, August 12 -- Young Women report to the plenary

Monday, August 14 -- The day I made my presentation

Thursday, 17 August -- Ecumenical News International Reports Sophie's story

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Friday, 18 August -- Ecumenical Advocacy Alliance Video

Sophie had an interview with Ecumenical Advoacy Alliance which resulted in a video depicting her story. Listen and watch her story.

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Thursday, 17 August -- Ecumenical News International Reports Sophie's story

HIV-positive woman who did not fit stereotype, now educates

Kristine Greenaway

Toronto (ENI). Sophie Dilmitis suspected she was infected with HIV but her doctor told her that wasn't possible. "He told me not to be stupid. Young Zimbabwean women like me - white, healthy, middle class, not promiscuous - didn't get the virus." The doctor was wrong.

When she received the results of the test, she was both devastated and relieved. "Now I could do something about it. I wasn't quite sure what. But at least I knew, which was better than living in fear."

At first she hid her status. "Then I realised I had done nothing wrong, nothing that anyone else hadn't done. I realised that what other people thought had nothing to do with me."

In 2002, Dilmitis founded Choose Life, an education programme for young people about their right to have accurate information for their sexual and reproductive health. Dilmitis was worried about the stress on abstinence in HIV prevention programmes aimed at young people. It means "a lot of information is being held back about what they can do to keep themselves safe if they do decide to have a sexual relationship," she said. "Abstinence may be the way for some but it's not for everyone."

Although Dilmitis chose to reveal her HIV-positive status, she knows that not everyone is able to make the same choice. Her advice: "Know why you're doing it and don't do it without the support of family or friends." More than 7000 students in 29 schools in Zimbabwe have participated in Choose Life information sessions in the past four years.

Today Dilmitis is the HIV and AIDS coordinator for the Geneva-based World Young Women's Christian Association. Her mandate is to work with groups of women living with HIV and AIDS. That means organizing the Forum for Positive Women at the International Women's Summit on women's leadership and HIV and AIDS scheduled for Nairobi, Kenya in July 2007.

Musimbi Kanyoro, general secretary of the World YWCA (Young Women's Christian Association), recruited Dilmitis under the organization's policy of hiring HIV-positive women and ensuring their voices are heard at decision-making events where responses to the AIDS pandemic are planned. Said Kanyoro, "They can provide solutions they can live with. Young women don't want to be told what to do. They want to be part of finding the solution."

On 15 August, at the International AIDS Conference in Toronto, Canada, the World YWCA launched , a book jointly- produced with the Global Coalition on Women and AIDS, and with the support of UNAIDS. Dilmitis is co-editor of the book of stories about young women who are working to alleviate suffering from AIDS and HIV. "If I kept it to myself"

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Monday, August 14 -- The day I made my presentation

Yesterday was only the first day of the conference and already I have heavy bags under my eyes and my clothing is feeling a little less tight – that’s because I have been running from one session to another and from meeting to meeting, another reason why I have not written in the last couple of days.

I left the hotel at 6:30am yesterday morning to attend the women and girls rally, which was extremely well attended and returned back to my hotel after a long day at 9pm.

Last night I was part of a panel of women that spoke out about human rights violations that are occurring in our countries. The session was called “In Her Own Words" and was co-sponsored by the International Women's Health Coalition (IWHC), International Community of Women Living with HIV and AIDS (ICW), and Association for Women's Rights in Development (AWID).

This session made clear the rights violations that have led to the growing number of women who are now living with HIV and AIDS. Panelists from different regions, positive women activists and policy analysts identified where appropriate policy or program interventions would make a difference in terms of HIV status, treatment and community response.

The other panelists were Judith D. Auerbach from amfAR (United States) and Paulette- Nicholas from Lighthouse Counseling Center, Inc, (United States). Anjali Gopalan from The NAZ Foundation (India), Anandi Yuvaraj from India HIV and AIDS Alliance and Lynde Francis from The Centre (Zimbabwe)

My presentation went something like this….

Being a young woman from Zimbabwe, where do I begin to talk about the human rights violations that have occurred and continue to occur in my country? How many women, especially young women, are given the chance to speak in their own words, and I am not talking about sessions like this one or tables where decisions that directly affect them are made but I am talking about in their lives in general – being able to enjoy human rights and speak out openly and freely about what they need and want.

Because I live with HIV and because I saw the yawning gap between what young people need to know and what they were being told, in 2001 I began a youth prevention programme called Choose Life .

A few years into the project, I wanted to train other youth living with HIV to continue working with their peers in schools. I met with representatives from the Ministry of Education, to obtain approval for trained HIV-positive youths to enter government schools and initiate much needed discussion around HIV and AIDS.

Informed HIV-positive youths talking to their peers about what it is actually like to live with HIV can make youth relate to the situation and can break down many stigmas and correct some of the misconceptions that still exist around HIV and AIDS today.

I was told that it is against policy for anybody who is not a teacher and employed by the government to address young people in schools. It is also against policy for anyone to talk to young people about condoms, let alone show them how to use one, but rather to give them only one option to prevent HIV infections – abstinence and abstinence only. Yet for how many young women is this really an option? With the infamous Zimbabwean government operation clean up (Murambatsvina) the 2000 accessible outlets in rural areas distributing condoms were demolished along with homes and livelihoods.

One reason why abstinence is failing young women is because it does not allow them the opportunity to address issues around their sexual and reproductive health and rights.

We know that most times young Zimbabwean women marry men 5 – 7 years older than themselves. The very thing that we are telling young women to do, abstain till you are married and be faithful is the very thing that is placing them at risk of contracting HIV as many infections occur in the marital bed.

Most sexual education and HIV and AIDS awareness in schools in Zimbabwe is not youth friendly or realistic and does not address the needs of young women. And further to this they lack access to health care services.

There are very few successful educational programmes offering comprehensive information to youth on HIV, AIDS and sex in Zimbabwe. One such programme is Aunty Stella , produced by Training and Research Support Centre. This is based on an agony column and allows teenagers to talk about sex, life and relationships. The only way that TARSC have ensured that this programme is implemented is that when teachers sign onto being trained the teachers themselves finance part of the training budget. This also goes to show how unsupported teachers are to implement comprehensive information on HIV and AIDS.

It would almost be acceptable for civil society to be kept out of schools if the government supported schools and teachers and provided realistic education to young people. Instead teachers themselves have little or no understanding of the issues and are afraid of raising the subject in case they are subjected to stigma and discrimination or criticized by parents.

Heads of schools allowed me in because they do not have the information they need. Instead of trying to discuss and address issues around HIV and AIDS and sex and sexuality they are more than happy to let someone who is comfortable do the job. I was allowed into schools with the understanding that if any questions were asked the onus would fall on the heads of schools for allowing me in. They were fully prepared to take this risk.

Until tomorrow

Sophie

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Saturday 12th August 2006

Young Women report to the plenary

“The campaign "Keep the Promise" holds individuals, religious leaders, faith organizations, governments and intergovernmental organizations accountable for the commitments they have made and advocates for further efforts and resources to fight HIV and AIDS.” Ecumenical Advocacy Alliance

Yesterday evening was the closing of the Ecumenical pre-conference and as young delegates, we reported back to the entire caucus of delegates as part of the final plenary. We stood up, amongst the delegates and spoke out about the promises that have been broken. Our statement was about the promises that have been made and broken .

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Promises have been broken

But why

The issues are complex

But why

There are so many voices that are not heard

But why

Young people are left out of the discussion

But why

They are not in leadership positions

But why

They think youth are not competent

BUT

We are competent

We are capable

We are part of the discussion

We have something to say

We are part of the solution

We are committed to our promises, what about you?

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Young people have the creativity and energy to be at the forefront of preventing further HIV infections. We must be involved at a decision and policy making level. We need to have a voice, be listened to, and be taken seriously.

We are capable and governments, civil society and ecumenical organisations should include us in devising and implementing prevention messages for young people; after all, we know what messages we will be able to relate to.

Due to the stigma attached to HIV and AIDS, some adults, like parents and teachers, do not feel comfortable discussing issues relating to HIV and AIDS.

It is vital that youth today have all the facts and not just the information we think they are ‘ready’ for. Young people have sex for exactly the same reasons that adults have sex. For procreation, pleasure, income or to avoid being beaten might top some lists. How will youth know how to avoid harm if we are not even talking to them about sex? Isn’t our own embarrassed and shuffling silence blinding our youth to the risks of unsafe and uninformed sex? Are we not part of the problem when we argue for protecting the young against necessary information?

It is often said that talking to young people about sex and sexuality promotes promiscuity. Therefore the subject is avoided, perpetuating the lack of knowledge that exists among young women. Yet many different studies have proven that talking to young people about sex and issues of sexuality enables them to make informed and educated decisions. They are more likely to delay their first sexual experience or abstain. If they do decide to have sex, they will have the knowledge of how to practise safer sex.

I am not against abstinence. It is 100% risk free and you do not achieve that any other way but I believe strongly in giving youth all the facts and allowing them to make their own decisions about their lives that they will have to live with and then bear the consequences thereof. How will they know what the consequences of their actions are if they don’t have all the facts?

One of the young delegates from Zimbabwe ended the youth report back by quoting Benjamin Franklin “Tell me and I forget, teach me and I remember, involve me and I learn”

Until tomorrow

Sophie

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Friday, August 11

Day One: Pre-Ecumenical Conference

Yesterday, we young women from the World YWCA and the Ecumenical Advocacy Alliance facilitated two workshops on ABC’s – What about women ?

‘A bstain, B e faithful, use a C ondom’, has become a mainstream slogan worldwide for preventing HIV infection, but by using only this we fail thousands of young women.

Behaviour change is only one aspect needed to prevent HIV infections. Young women’s choices are limited by poverty, lack of education and information, access to services and repressive gender norms. ABC is simplistic and not a holistic approach for young women to avoid HIV infection. Understanding the challenges makes us better equipped to address them successfully.

Prior to joining the World YWCA team, I had not had much experience working with Ecumenical organisations. I have been pleasantly surprised to see many Ecumenical organisations that are very progressive and addressing the needs of communities on the ground. I found that the participants in the workshops are aware of the challenges that come with working in Ecumenical organisations and churches.

When asked the two questions of what makes young women vulnerable to HIV and then asked how we address those issues in a holistic manner, the participants were able to compile good prevention strategies. It became apparent that we do know how to protect women but the challenge arises when we try to convert this knowledge into action for protection of others.

One thing that I found interesting in the workshops is that there seemed to be a great disconnect between prevention strategies and messages and treatment care and support for people living with HIV and AIDS. The emphasis seems to be on prevention.

I like to think that every time I speak out, I am breaking the silence surrounding HIV and AIDS. In doing so, I hope to prevent further infections and tackle the stigma and misconception that surrounds HIV. Not that all the responsibility should be placed on positive people to educate people about HIV and AIDS, but who better to do this than people living with the virus? When an HIV positive person speaks out, a human face is given to HIV and AIDS. Unlike a politician or doctor talking about statistics, people with HIV can talk from the heart, making it real and powerful.

When we hear the word prevention we tend to think about investing money in protecting the HIV negative population. Have we ever thought about the power that HIV positive people have in terms of prevention, and that people living with HIV and AIDS themselves may hold the key to prevention if we invest in them? On the other hand, HIV positive people have to start investing in their own lives too, so that they may live healthier, more productive and longer lives.

What makes one infected person lead a responsible, healthy, productive life and another not? What makes a person get tested, accept their status and do something about it and another not?

Think about this : as an HIV positive person, I have the potential to infect hundreds of people every year, but I could also choose not to. My victory over HIV is in knowing that one day when I die, which is many years from now – my HIV will die with me.

Why should one know and disclose their HIV positive status if we continue to alienate HIV positive people in society, if there is no treatment, care and support, and if there is nothing for them to gain?

Research has proven that providing treatment, care and support affects the spread of this pandemic.

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A statement prepared by young women from the Ecumenical pre-conference

As young women who are part of the ecumenical community we demand that all strategies relating to HIV prevention 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--from creation to implementation, protectionagainst all forms of violence, stigma and discrimination, HIV infection and other STIs
• Providing access to appropriate, comprehensive, scientific and evidenced based prevention information as well as the faith based aspects

• Promoting prevention messages that work for young women and address young women’s specificities
• Ensuring (where possible) that there is accountable, youth-friendly, women friendly and HIV positive friendly health care services
• Supporting developments of and demanding governments ensure that women have access to female controlled preventative methods such as microbicides 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 skills-based training on relationships as well as assertiveness and communication training, including negotiation skills 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 of 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 following this, that the person responsible will not be 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.

Until tomorrow

Sophie

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Thursday, August 10

Sophie’s thoughts before the conference begins

Flight KL691

After months of preparation I am just over an hour away from landing in Toronto where I will be attending the XVI International AIDS conference. The title of this year’s conference is Time to Deliver .

I am thrilled to have this opportunity to unite with 25,000 other people from all walks of life because for whatever reason, HIV and AIDS, in some way affects us all.

In 1999, receiving an HIV-positive diagnosis was like receiving a death sentence. The complete lack of information and knowledge available left me disillusioned and ready to give up. It was only with strong family support that I gathered information on HIV and AIDS and was encouraged not to give up. A year later I attended my first international AIDS conference in Durban which 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 (my home country) with enthusiasm to take up the challenge of being HIV positive in an open and public manner, breaking the silence in my life around HIV and AIDS.

As I sit in my chair, my mind is drifting between the future – who I will meet, what I will learn and the experiences I will encounter to the past international AIDS conferences.

I remember one evening being invited to a dinner, which I attended not knowing anyone. I was accompanied by a woman from the United States of America, who was a doctor by profession. She asked me what work relating to HIV and AIDS I was involved in and I replied – “none, I actually make Japanese Zen gardens”. She looked confused and said to me “well, why are you here? and I lied saying that I was just interested in HIV and I really wanted to learn more. Half way into the dinner, I decided to tell this woman the truth, which was that I was there because I was HIV positive and I needed to know more. I leaned over and whispered in her ear and apologised for my dishonesty… I explained that I was positive but only a hand full of family members new my status and her response was “Me too… and I am in the same position as you, so please don’t tell anyone” That was the day that I realised that it was not just me with this problem – that there were other women like me, even this educated doctor was living with HIV and also afraid to talk about it.

I have been very privileged since then to have been present at many international events that unite so many different people with different experiences. For most people, airfares and conference registration fees make these events inaccessible, so I have decided to write to you daily and let you know what’s happening at the conference.

“Time to deliver ” is the conference theme this year. We now have good international policies that are inclusive of women’s issues but now we must become the watchdogs of governments and civil society to ensure that promises made are kept and that at this critical time of the pandemic we deliver what the people need. The time is NOW !

Until tomorrow

Sophie