Living Positively in Zambia

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Last week I attended a conference about Positive Living for people openly living with AIDS and those working in the sector. The conference focuses on four areas: the mind, the body, the spirit and the environment. The mind track explored depression and AIDS, as well as the role drugs, stress and comedy. The body focused on Anti-Retroviral Therapy, exercise, traditional remedies, and sexual and gender based violence. In the spirit track, positive spirituality, sexuality, relationships and the creative arts were discussed. Finally in the environment track, stigma, discrimination, leadership, partnership, the electoral process and advocacy in Zambia were tackled. It was an intense two days!

It was fascinating to get a glimpse into the Zambian psyche and some of the reasons why AIDS has such a hold in this region. Although the ABC (Abstain, Be faithful and use a Condom) campaign to stop the spread of the disease is being promoted in this region, very little behavior change has occurred. Abstinence rarely occurs and few people are faithful. Although people know about condoms and how to use them, there are countless cultural reasons why they are not used. Not to mention the lack of US support for programs that endorse condoms (US funded programs endorse A and B but not C, preferring to focus on the 10% failure rate of condoms rather than the 90% success rate).

Canadians expect to be living well into their 70s but the outlook is not as positive for most people in Southern Africa where the life expectancy is generally in the 30s. Those living in poverty are thinking about their daily and weekly needs, and not planning for the next year or the next five years. There is a widespread belief that AIDS is everywhere and unavoidable. If sex is less pleasurable with a condom, then why wear a condom because one will contract the disease anyway?

For example, sex workers who know they are positive still did not feel compelled to change their behavior. They can earn twice as much for unprotected sex and all of their earnings are tax free. Furthermore, the income made through prostitution cannot be matched by any government retraining program. The fight against HIV/AIDS is fraught with complications.

But the conference left me with a lot of hope. The openness, support and strength of the people at the conference was really exciting. Two petitions were circulating, one requesting the formation of the ministry of HIV and AIDS with a positive minister and the other demanding electoral reform so that the disabled, the sick in hospitals and prisoners have a way of voting. All the conference delegates took the time to thoroughly read the petition and asked lots of questions before putting their name on paper. It was interesting to see how people considered the full importance of what they were signing, unlike in Canada where many of us glance and sign before hurrying on.

What is Positive Living?

(From the CARE brochure, to clarify the concept of Positive Living)
Positive Living suggests an attitude or belief that a Person Living with HIV and AIDS (PLWHA) who is informed and positive about their situation lives healthier and happier. Such an attitude may help a person’s immune system; slow progressions of HIV related diseases and sustain their well being. It motivates people to take control of their lives, and demand their rights to information, health care, safety, support and dignity.
The aim of the conference is to create a practical understanding of Positive Living that can be realised from grassroots to government level, and work out the best ways of coordinating everyone’s efforts involved.

Why is Positive Living important to you?

Civil Society in Zambia includes private and public sector organisations of all sizes, government agencies and ministries, the international partners that support them, and the Zambian citizens they all serve. Together they make a network of economic and social relations that depend on each other for the strength of the whole.

Therefore, as an issue that affects national development in countless ways, how Civil Society is served by and supports people living with HIV/AIDS is an urgent matter for everyone’s attention. How we choose to live and work together will decide the long-term qualities of health, well being and opportunity for us all.

This is the first gathering of its kind in this country, a ground-breaking event where the practical results will guarantee its future impact on Civil Society and all its members, not simply waste time and money so bureaucrats can discuss the same old problems between themselves.

People Living With AIDS: Telling our Stories

These are some of the testimonials of People Living with Aids (PLWA) from the conference. I wrote this up from the notes I took and tried to remain as true to their intent and delivery as possible. I takes a lot of courage and strength to stand up in front of 50 people and talk as honestly and openly as these people did. They were truly inspirational.

A few notes on acronyms:
VCT - Voluntary Counseling and Testing
ARV - Anti-Retro Viral Drugs
ART - Anti- Retroviral Treatment
CD4 count - obtained from a blood test and gives an indication of the strength of the immune system. I believe healthy CD4 counts are greater than 600 but can be as high as 1000. People who are HIV+ will have counts as low as 100.

Mr. Amadi

In 1999, Mr. Amadi heard about HIV/AIDS and went for VCT testing. He was negative at the time. In 2002, he was retested, and this time he tested positive. The counselor told him,

This is a new start.

He told his wife, and she left him a week later because she could never have children. He told his parents and his mother accepted his status, while his father did not. His father told him to stand in the pouring rain saying “maybe if you get soaked, the virus will wash away.”

Mr. Amadi moved to Lusaka, where he was advised to disclose his status so he could receive help and support from the community. However, he refuses ARVs because he is afraid of a supply cut. Instead he changes his behavior by eating nutritious foods and exercising.

By living positively, his CD4 count rose from 350 to 404 and he now weighs 72 kg. He encourages others to set their mind free by getting tested. He says there is no harm in testing and being positive. But it gives Mr. Amadi pain and grief that there is no cure. He says to civil society,

do not send us to the graves before it is our time, rather help us, and give us the care we need.

We shall fight and conquer the HIV virus.

Mr.Amadi is also responsible enough not to have girlfriends.

Wilson Zulu (another conference participant) responded to Mr. Amadi’s story by noting that we cannot depend wholly on positive living and cannot have a negative attitude towards ART. We must take the attitude that there are free ARVs and that will continue. The improvement in CD4 count is also dependent on the length of the time the virus has been in one’s body and positive living through nutrition and exercise is not enough. This was one comment of many, a healthy debate ensued.

Mr. Kunta, 45, Works in the planning department of the ministry of agriculture

Mr. Kunta was an exemplary community member - he worked as a counselor, in palliative care, and was an elder at the local church. But he never went for VCT because he assumed everything was OK. However, when he saw rich, educated and married people with the disease he got tested. He was HIV+ with a CD4 count of 140. It was very painful, like a cloud. He thought

How can I disclose this to my wife? We have a very happy life. How to tell my boss?

First he told his boss and then took courage and told his wife. She said

What else can we expect in this pandemic?

and was committed to supporting her husband and learning about the disease.

Since then he has organized a meeting for staff to talk about VCT. He has received a lot of support from his children who always ask

Are you taking your drugs on time?

His wife is HIV+ too but she is never sick. She has only been in the hospital for the birth of her children and her CD4 count is over 600.

Mr. Kunta says

Because I have been open, the so-called discrimination is not there.

Once you are open the stigma is reduced, I received lots of support.

I am contributing in the form of information, and it is information that people need.

Anonymous woman

She is the first born in a family of three and has lost her two sisters, and her mother and father. She does not know any of her father’s relatives. While she is HIV+, her husband and her two children are negative. But she asks

If I die today, and my husband also comes from a broken family, who will care for my children?

She has been open. Her husband is supportive, helpful and gives her courage. She needs someone to support her to move forward.

She says

Let’s try to be truthful to our children

The life my parents were living was not right

We are not going to fight it quietly.

Sue

Sue’s husband became sick in 1994. The University Teaching Hospital (UTH) said he had malaria, but there was no malaria. The doctor simply said there is no cure. Then Dr. Manda at UTH took a blood test. One week later, both Sue and her husband were found to be HIV+ and were scared. The husband said

If you tell anyone, I will hang myself.

So their status was kept a secret.

Sue became depressed and stressed with the burden. Dr. Manda told her to share her status with other people. She did, however, the information reached her elder sister who spread the news all over the township. The husband fell ill because people knew and died in 1996.

Sue got malaria in 1997 and 1998. In 2002 she had malaria and was anemic. UTH doctors were scared and told her to go back to the doctor who was treated her to start ARVs.

Luckily a friend in Italy could send Sue ARVs. But she told some people and one day she found the posted drugs were stolen. Her CD4 count dropped to 61 and her weight to 28 kg.

Now she has a granddaughter and is lucky to be living. She has been HIV+ without a husband for 10 years, who can blame her for asking about masturbation during the sexuality session?

Sue ended the testimonial session with a beautiful song she wrote in some of her darkest days. She has tremendous faith in God.

Others who contributed to the session said

The conference has inspired me, changed my perspectives and I am willing to go for testing

Let’s start empowering ourselves, so we can fight our own fears.

Participants also noted it is important to sensitize your families before disclosing your status.


Parting thoughts

I might add that positive living is not just for people who are HIV positive. One of the neat concepts that came out of the conference was “being negative, living positive”. I particularly like the idea because it is so inclusive. Why wait until you’re sick to change your diet and start taking care of yourself? All participants, negative or positive, were asked to sign a positive commitment form where they would make small behavioral changes over the next year in each of the four focus areas: mind, spirit, body and environment. Commitments range from forming a support network and visiting friends to advocacy work.

The last things I’d like to add was that we watched a movie called Living with AIDS by a Sierra Leonean director Sorious Samora. It’s a very powerful movie filmed in Mongu in Western Zambia. I would highly recommend it if you can find a copy. Apparently it was aired on the Passionate Eye awhile ago.

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Photos

Learning how to do Aerobics!
This was priceless. Aerobics (and excercise) is a very new concept in this part of the world and everybody was giggling throughout the demo. After about 15 mins, there were desperate calls for "Water! Water!"

The High Chieftainess
Her royal highness graced the conference with her presence. The traditional systems of government are weakening in Zambia, but conference delegates spoke very highly of the chieftainess.

Kenneth Kaunda
Former Zambian president, Kenneth Kaunda, opened the conference. He ruled Zambia from independence in 1964 until the early 1990’s and much revered to this day despite his spotty track record.

Africa Direct Theater Group
At the end of each day, the Africa Direct Theater Group offered us a creative interpretation of the day’s sessions.

Traditional Healing Panel
Traditional healing is still heavily practiced in rural areas despite the lack of standardization of dosages and treatments and the unknown interactions with ARVs. While some remedies are effective in relieving symptoms of AIDS, it can be difficult for patients to tell the difference between a traditional healer and a witchdoctor.