Remembering Thembi, an advocate for youth living with AIDS

June 10, 2009 at 5:21 pm | Posted in Uncategorized | Leave a comment
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thembi radio diairies

Last year I wrote about meeting Thembi, a young woman living with AIDS in South Africa who streams a radio diary.   She died this week.

The journalist who helped her start her radio diary wrote this in remembrance:

Thembi thought about death almost every day. Yet she was the most alive person I’ve ever met. She sometimes asked me why I chose her to do an audio diary about her life. But I feel like she chose me.

Thembi had been struggling off and on with TB. A week ago she learned that she had multi-drug resistant TB. She died Thursday night in the hospital.  She was 24.

Thembi gave me, and many of us, a lesson in courage and in embracing the craziness of life – good and bad. She was brave and open about living with AIDS at a time when most South Africans were quiet about the epidemic. She thought the virus should be scared of her, rather than the other way around. She drew pictures of her virus. She talked to it in the mirror. She gave it orders.

Thembi had a short life. But it was a full one by any measure. She had a child. She found a soul mate in her longtime boyfriend, Melikhaya. Her story was heard by millions of people in a dozen countries and five languages. On her tour  of the United States, she met Bill Clinton and then-Senator Barak Obama. She traveled to Germany and India as a Unicef ambassador. She was a contestant in an African reality TV show. In South Africa, she became a role model for young people living with HIV. She experienced the hard edges of life in ways that I still find hard to fathom.
I remember when Thembi was invited to address the South African Parliament. “Accept that AIDS is here,” she told the country’s leaders. But life is a mix of cosmic and mundane. The next day, Thembi was back to her normal life: standing in line at the clinic for antiretroviral drugs, caring for her baby, and hoping for a job.

By now, we are all so familiar with the statistics. More than 5000 people die every day from AIDS. Somehow, it never seemed Thembi would be one of them.   Thembi embodied great ambition to be heard and seen. She thought it was important to speak out against stigma and  discrimination. But she was also motivated by fear: she didn’t want to be anonymous… or forgotten.

Thembi we heard you.

And we miss you.

Waiting for death, with no help from the church

March 2, 2009 at 12:45 am | Posted in Uncategorized | Leave a comment
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Fulata Moyo

Fulata Moyo

This year’s Commission on the Status of Women is discussing caregiving in the context of AIDS.  This theme is not well understood – and incredibly unequal because women are almost always the ones who care for the sick. Yesterday I heard Fulata Moyo from Malawi and the World Council of Churches talk about losing her sister to AIDS and her husband to cancer.   She focused on lack of care for the caregiver, unpredictable wait for death, and the use of sacred texts to maintain widowhood. What impresses me is that after her husbands death – she went around and told churches how to better care for the caregivers…

When people from the church came to visit me they only said that God would heal my husband.  The church told me over and over that God will heal him.   I did not want to tamper with that so I prayed day and night and did not sleep.  I was giving care to my husband but I also needed care.  Some Christian fundementalists visited the bedside and told me there were symbols on my outfit that were demonic so I burned that outfit.  I loved that outfit.

After he died the church people told me that God was my husband.  But after 6 months I had physical needs.  These are issues women face and they will not talk about it.  I asked my pastor, so God is my husband, what can I do? Our male pastors do not know what pastoral care for women is.  Most women do not talk about this but I do because I am one of the crazy ones.   If I had had daughters they would not have gone to school during this time because you also have to care for all the visitors that come to see the patient.  Praying was seen as the only way to be supportive, if the spirit was OK then the body was OK.  But I needed someone to cook the food.

After he died I went around and talked to churches in the region and shared my experience and called for a greater commitment to pastoral counseling.  My advice to people who are with someone who is dying:  ‘if you don’t have wisdom keep quiet, and don’t talk to a widow about being a husband of god.’

A Communion of Care, a sermon for World AIDS Day

December 1, 2008 at 10:13 pm | Posted in Uncategorized | Leave a comment
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bu_aids_badge2

I was asked to preach today for World AIDS Day at Advent Lutheran Church.

I woke up this morning on World AIDS Day with many emails in my inbox from around the world.   WAD is a time of social networks, and we celebrate it in many ways – we post liturgy on websites, email, worship, remember, give money, wear ribbons.  Today is the day that we do these things all at once, all over the world.  By sitting here in these pews we are part of a chain of reflection and action.

AIDS is with us in the US, but from my work at the Lutheran Office for World Community, an office representing the ELCA and LWF at the United Nations, I have seen the immense and tragic effects of AIDS’s in countries that are poorer than ours.  Having traveled to far off places, I feel I must tell you what I have seen, that among suffering I have felt awe.  This witness is what I am going to talk about today.

When I visited Kenya last year, I sat with a group of women at Jerusalem Parrish in Nairobi.  These women meet weekly for a widows support group. In Kenya, widowed women are considered outcasts, and face discrimination.  After the husband dies, it is part of the culture for his family to take his land and his house, in the worst cases forcing the woman out on the street with nothing.  One of the women told me: “As you mourn death of your husband, someone from his family is in Nairobi filing the paperwork.”  I can’t imagine, on top of such a loss, having to fight for your home at the same time as you grieve.

Continue Reading A Communion of Care, a sermon for World AIDS Day…

T-shirts and art are worth a thousand words at International AIDS Conference

August 19, 2008 at 7:12 pm | Posted in Uncategorized | Leave a comment
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lets face it, sex workers, prisoners and drug users are scary

August 6, 2008 at 5:34 pm | Posted in Uncategorized | Leave a comment
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Blogging live from the International AIDS Conference

art is from Mary Buttons blog -action to access.

What is standing out for me at the conference is the need to focus on investment and programs for and research of the most at-risk groups–, men who have sex with men (MSM), drug users, sex workers and prisoners.

Let’s be frank, this is no “save the children” kind of cause – generally people are afraid of these groups and don’t know much about them. I’ve had a lot of global experiences in my life, but I have never spoken directly with a sex worker or prisoner (to my knowledge). With so many sex workers here, I can surely change this soon.

Simple prejudices and impressions aside – the numbers tell a shocking story. Of global AIDS expenditures, only 1.2 percent is spent on specific responses to men who have sex with men. This totals $3 million out of the estimated $30 million needed according to UNAIDS.

“Less than 10% of high risk populations are receiving appropriate prevention.” Alex Coutinho, Executive Director, Infectious Disease Institute Uganda. In Uganda, a prisoner is more likely to die of AIDS than any other cause.

Outside of Africa – drug users, sex workers and men who have sex with men make up the vast majority of those contracting HIV. It’s amazing after 25 years and billions of dollars we are not able to better address these populations. There is research and success stories that document what works in these populations, especially in Mexico and Brazil.

Youth are key to this struggle actually – we need a generation of young people that can fearlessly empower and protect the human rights of sex workers, prisoners and drug users.

Thembi´s radio diary tells story of living HIV positive

August 5, 2008 at 4:16 pm | Posted in Uncategorized | 1 Comment
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On-air speaking about Living Positively

With her doll-like face, she hardly looks her 23 years, but Thembi has learned a lot about life. After she was diagnosed with HIV at age 16, she started taking a tape recorder with her everywhere. At aidsdiary.org, listeners travel with her to her first visit to the doctor, and hear when she learns about the decline of her T-cell count. The stories cover her progression to full-blown AIDS, starting ARV treatment, and finally giving birth to a daughter.

Presenting her story at the International AIDS Conference in Mexico City, she talks about how keeping a diary empowered her. “Ever since I knew my status my life has changed for the better. Ever since I started my diary I have felt more confident and comfortable and I am an inspiration to other young people.”

In a conference of thousands of experts, the most powerful presentations still come from personal testimony. In one of her entries, she reflects on the future.

I’m just imagining what a world would look like without me in it. I’m not scared of dying but of leaving my baby behind. I want to see her grow a little bigger. HIV will try to rule my life on the inside but outside I will be boss. I want to study and have a good job, I want to go on with my life.

Beyond the radio, Thembi also writes a blog. Attending a recent concert hosted by the South African government, she reflects below on how AIDS messages still don´t effectively reach young people at risk.

I felt like those images on those big screens with infected people had nothing to do with me. It reminded me of high school. When they would show pictures of thin, poor orphans that look like they are dying, and try to scare you out of having sex. But it never works because young, South African, at-risk kids do not see themselves in those images. They cannot imagine that it can happen to them.

Her shows have been used as a teaching tool all over the world and aired on National Public Radio in the U.S., and in the U.K., Australia and Canada, reaching more than 50 million people.

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