Lyn @ the 32nd General Assembly of the ICW 16/10/2009

In October 2009, the 32nd General Assembly of the International Council of Women was hosted by the National Council of Women in South Africa. As part of the activities, they asked Lyn to chair and help organise a full day seminar on the topic “Caring for Women and Children Living with AIDS”

 The following reports were part of NCW news, the Journal of the National Council of Women, Volume 79, Number 1, published in March 2010.

Feedback from Participants

Our Seminar on “Woman and children suffering from HIV/AIDS” chaired by Lyn van Rooyen of CARIS, the Christian AIDS Resource and information Service, was a revelation to most of us, and there were many tears. Many of those attending took a pledge to assist AIDS victims in the future.

Jeanne Luyt, SA NCW President

The excellent presentation of the numerous top speakers at the seminar touched the audience. The emotion was real when speakers mentioned personal experiences.

Cosima Schenk-Incoming President

Participants were stimulated by informative lectures and discussion of important issues for women. I congratulate NCW South Africa on the Seminar addressing issues relating to HIV/AIDS. The high standard of speakers put this important issue in perspective.

Dame Judith A Parker - a returning board member from Australia.

The day spent with well-informed speakers on HIV/AIDS was inspiring. To know that the passion and knowledge of so many must surely bring solutions, and is a large step forward.

Elizabeth Bank – New Zealand

A major seminar on the subject of HIV/AIDS, and its effects on women both as carers and victims, was arranged in South Africa as part of the Conference. 1000 people die every day in South Africa as a result of AIDS. Many informative contributions came from groups, both black and white, working in this field, together with many health experts, speaking on subjects such as “Stigma and Attitudes”, “Reality of living with HIV/AIDS”, “HIV, Gender and Violence” and “Mother to child transmission”. The need to persuade people to take the antiretroviral drugs, which can help against the disease, particularly in children, is a constant struggle, as there is some local mistrust that medicine can in fact make the disease worse. The role of women as Carers is vital, although many are also victims of the disease, and many widows and older women are left to care for orphans with little support. The related questions of domestic violence, and of women and rape were also included.

Report to ECICW members from Grace Wedekind, ECICW President.

At the Gala dinner - Janet Louis, SA NCW President; Jackie Reymann; Jeanne Luyt; Cosima Schenk, incoming president ICW, Lyn van Rooyen

Report on Seminar and presentations

By Mrs Vera Oosthuizen, Methodist Women’s Auxiliary

The venue was ideal, as the hotel is in spacious grounds away for the city. Despite the horrendous state of the roads and the volume of traffic – let alone the standard of driving – the hotel is accessible within reasonable travel time, and parking available at the conference centre.

Delegates were seated at long tables – the public address system operated well and clear laptop presentations were made. Tea was available in the foyer, served by pleasant and efficient waitresses. Excellent lunches were served in one of the many restaurants. The comfort of the ± 200 delegates was of prime importance.

The president of ICW, Dr Anamah Tan, welcomed delegates and dedicated the seminar to the late Shirley-Anne Munyan who was a loyal supporter of the Council. Several tributes were paid.

Another welcome visitor was one of our members, an Appeal Court Judge, Sharmin Ebrahim, who had driven all the way from Bloemfontein to spend an evening with us before attending the Seminar.

Ms Lyn van Rooyen, Programme Manager, CARIS (Christian AIDS Resource and Information Service), in the Chair, set the scene for the speakers, who among them have many awards and distinctions. Each speaker promised to make a difference to people affected by HIV/AIDS. It is necessary to move from head knowledge to lip knowledge and to make our voices heard. Delegates had the opportunity to join in a pledge to make a difference in their communities.

Professor Glenda Gray – Director of Perinatal HIV research unit, Associate Professor of Paediatrics.

Theme: Paediatrics and SA Aid Vaccine Initiative – the Impact of HIV on Woman and children in South Africa.

When Professor Gray started research of HIV, three women in 100 were infected. This rapidly became three in 10. Most deaths in hospitals are due to HIV/AIDS, which is no longer an exotic disease. The Government has not been good at acknowledging the disease, so woman especially, took the Government to task and managed to obtain anti-retroviral medicine.

Globally, two million children are living with HIV. There is a slow decline in the death rate because of the availability of ARV medicines. Among adults, HIV is found in al professions and walks of life. In one year, 4000 teachers died, and there is also much absenteeism. In South Africa, the psychological/economic ramifications are very serious and here the infant mortality rate is increasing. For women being tested and taking the correct medicine the tide is turning. However, TB (especially the drug-resistant type) is on the rise.

The cost to South Africa is 4 billion dollars, with 900 million dollars spent on medicines and vaccine research. It takes many years to produce the necessary vaccines for various diseases. No vaccine is 100% effective, as it must act as rapidly as the infector, which is very rapid in HIV. The vaccine must also be diverse to cover the diversity of HIV. No person is ever cleared of HIV infection. In 1999, Eskom and the Department of Health funded HIV vaccines. No animal carriers were used for testing, as this must involve adolescents, a very difficult undertaking. They form 1/5 of the world population, with 85% living in developing countries. For nursing mothers, the vaccine must be administered for the duration of breastfeeding. HIV was identified in the 1980’s and the drug AZT was widely used in 1993.

Science is very important in the control and cure of HIV. In Mother-to-Child Transmission (MTCT) the risk of transmission depends on the level of the disease, whether it is in-utero or at delivery or during breastfeeding. African mothers face the deaths of their babies through either breastfeeding or the onset of acute diarrhoea from whatever food is available. An infected woman loses her immunity and treatment therapy is too late at birth.

How can women/mothers help to minimize or eradicate HIV? Many women are already infected and also caring for HIV families. These women still need to lobby government and have political commitment. Sadly, research favours other epidemics and diseases. There is also social resistance to ARV drugs – patients fear the stigma. Research must be ongoing. Mauritius, the Seychelles and South Africa are the only African countries to contribute towards research.

Charlene Smith – Journalist and Author:

Subject: Surviving rape and HIV

The global situation for women is worsening. Charlene paid tribute to Fran Cleaton-Jones (Advisor: Child, Family and Youth) who lobbied repeatedly for DNA database, as rapists are always involved in other crimes. In this country, policing and rape care is minimal. If the world relied on politicians we would still be in skins and hunting.

There is power in each one of us. We are helpless until we act, insignificant until we step forward. No one can hear us until we speak. As Mahatma Gandhi said, “Be the change you want to see in the world” We become extraordinary when we achieve impossible goals. We must acknowledge events, try to go forward, be positive, believe in ourselves, and the human spirit and have courage. A sense of humour is important, as is humility. We must never discriminate, as that exposes insecurity. An attitude of gratitude should prevail with an awareness of the planet, which we should then protect for our children. Only then can we cope with rape. Gang rape is perpetrated 40% of the time, so immediate testing for HIV is imperative. As a rape victim, Charlene was the first person to agitate for ARV medication. Too little is done to extend treatment and care to rape victims, especially as regards the side effects. The stigma attached to rape means that women receive no support, especially from other woman. Fewer than 3% of rapists are convicted. Why is there no campaign against rape?

Concern for physical health come first, eg testing for HIV and Hepatitis B. Psychological counseling is not the immediate necessity, and can follow when the victim is ready. Local police officers are ignorant of interview techniques and often don’t visit the scene at all. Police intervention is lacking, so no arrests are made despite 6-8 rape cases each week. Very low statistics are recorded because of poor policing.

Rape may very well be the result of increased drinking by young women. Rape also results in 20% of reported HIV. In South Africa, 1 in 4 men admitted rape, some repeatedly. Fewer than 15% of reports results in arrest, fewer than 3% in conviction.

“Protecting women and girls is how we protect the world” – Sarah Brown. The first post-rape protection is ARV medication to prevent HIV, and medication to prevent pregnancy. The second is to know the symptoms of post-traumatic stress syndrome (vomiting, pain, weight loss then gain, insomnia, suicidal thoughts, addictive behavior). Then we must move on and not remain locked in the rape.

Professor Ezra Chitando – EHAIA (Ecumenical HIV/AIDS Initiative in Africa) programme Of World Council of Churches.

Subject: Stigma and Attitudes

“It is better to build boy than to repair me.” A social vaccine is needed to build better boys and men. The story is told of a little boy called Doubt, who was HIV positive and dying. His death started and initiative to turn doubt into hope. Another story, in the Bible, tells of a huge crowd being fed. It numbered 5000 not counting women and children. Even then, men had n perspective and interests apart from men. Yet HIV statistics include women and children. They are counted. They are counted too as carriers, survivors and volunteer workers. Grannies also have roles as carers though they may not know where the next meal is coming from. HIV has instigated an epidemic of stigma and condemnation. “What did she do that she now has HIV? What did she do to deserve that? The victim lives a life of silence, secrecy, shame, hopelessness and despair. Her gender is against her. It is already difficult to be a woman in an African patriarchal culture, especially if she has the “woman’s disease”. As hard as it is to be a woman, it is doubly difficult to be Black. Africa is politically and economically poor.

Life is a struggle for an orphaned child living with adults in the role of parents. Government help is slow and erratic. Politicians don’t count women and children except for voting. Ministers of the Church don’t count women and children except as bodies to fill churches, employers except to fill quotas. Where would the world, and Africa, be without women and children? They must become the part of the community that count, have a sense of responsibility and enter into strategic partnerships. The mothers must grow the boys into men that count.

There is now a fatigue about the HIV/AIDS problem. But we cannot afford to be tired. Ahead is a long winding road, but we cannot afford to give up.

DOUBT MUST BECOME HOPE AND PROMISE.

GOD BLESS AFRICA

Ms Toni Zimmerman – Individual living with HIV

Topic: Challenging assumptions of who is vulnerable

“Look at me! I’m 42 and have had HIV for 20 years. That doesn’t open up any dating possibilities.”

Toni is the eldest daughter of an Afrikaans preacher living in a small town. At the age of 22 she found herself HIV positive, not married, pregnant and without a partner. He deserted her.

The first ten years of illness were years of breakdown, with everything lost. Toni had known nothing of HIV, and indeed nothing of life.  At that time there was no treatment for the disease in South Africa. The emotional battle started with having to tell her parents, and Toni’s father just said, “What can we do?” knowing that the stigma is more killing than the virus. Toni’s mother blamed herself. Toni had no medicine through the pregnancy and birth and the little boy was diagnosed as HIV positive. In 1996, Toni became ill and prepared her family for her death. The next year her 7 year-old son died. Suffering HIV was not as bad as losing her child. Things were not good, with no work, no partner and no son. The family suffered, afraid that Toni would succumb because she wasn’t fighting for life.

Then Toni started dancing classes, Latin American and ballroom, and entered the world championship. The second ten years of living with HIV were years of recovery. An ARV drug programme was started, leading to good health and work opportunities. Women have issues – self-image, self-confidence and self-esteem. Toni couldn’t look in a mirror because of a side effect of ARV treatment – fat in the body. This caused deep depression, as her work entailed travel and overnight stays in hotel rooms lined with mirrors. A huge reality check forced Toni to make decisions. Would she remain depressed or become grateful for her health? She learned to groom herself, look in the mirror and say, “You’re OK!”

Toni is blessed with having education, her parents, her work and medical aid. So she must give hope to women who face walls and teach healthy living and the rights of women. Thanks to science she will survive another ten years.

Mrs Emily Tjale

Subject: Caring for HIV at grassroots

Emily’s family – brother, sister and nieces – has HIV. It is important to disclose the status in order to seek help and possible treatment. Child-headed families have no property rights as these are taken over by the adult family members. The women have to act as social workers and caregivers and mothers. Physical setbacks are enormous, with people having to walk ± 5km for water, which is then paid for. Local leaders scorn the caregivers, calling them names. Referrals to clinics and health professionals are not honoured.

Emily runs an academy for caregivers. Even then she was told that the cost of attending this ICW Assembly could feed 5 families. Caregivers need women (especially white women) to lobby Government, though it is essential to have relevant information and statistics. The United Nations Assembly approved a resolution to make caregivers professional workers.

Ms Carol Dyanti – Ikageng Itireleng AIDS Ministry

Topic: Practical support of children affected by HIV in Soweto

“No man stands as tall as he who stops to help a child” Greek proverb

“Nothing pays more dividends than attending to the needs of the child” Nelson Mandela

The impact on the child affected by HIV is mainly psycho-emotional. There is the loss of the family unit. There may be no schooling because he is caring for the family. Constant trauma is suffered because of the ongoing infection through the family. The child is moved from home to home as each ne family is infected. A great lack of communication exists between parents and teenagers with the result that young girls are not receiving sex education, and pregnancies occur. Grannies are bewildered, as they live by their own standards of the past.

Programmes designed to help children are facing the loss of funding, as psychological needs, are not seen as important by donors. Money is required to supply physical, education and cultural support. Children have a right to protection, spiritual upliftment, and education, health care, nutrition and family preservation. The last is the right of parents as well along with housing assistance and participation in awareness campaigns and social upliftment. In other words, the spirit and values of UBUNTU.

“Race Against Time” by Stephen Lewis is recommended reading.

Dr Adrienne Wulfsohn – Family Medicine, University of Witwatersrand

Theme: Domestic Violence – The Silent Epidemic

Domestic violence is a greater epidemic than any other. Statistics reveal that one in two children will be sexually abused, and one in three boy children. Adrienne herself survived domestic assault for twelve years. This involved rape, verbal/financial/psychological abuse. She was unable to stop it and allowed abuse to her child. She was also too embarrassed to report it.

Domestic violence occurs and can take the form of verbal, emotional and/or physical abuse, sexual intimidation and stalking. If reported, police may advise against a court case. There is now a Domestic Violence Act and a Child Care Act, also Child Justice.

Adrienne’s husband threatened the family, including children aged 7 years and 16 months respectively, and displayed a firearm. This threat occurred in 2007 and there has been no police action at all since then. Officialdom doesn’t help, as court hours are 9h00 – 12h00 and 14h00 – 15h00. The court must ensure that the Domestic violence Act fits the circumstances. The police have certain duties to fulfill – currently there are more than 95 000 reported cases, each needing compulsory HIV testing, services to the victims of trauma and enrolment on the sexual register (if appropriate). Adrienne’s case took eight months to process to the final order. The Child Care Act is not yet fully operational and a child may have to testify in front of the perpetrator. Education is needed so that police and officers of the court can carry out their duties properly.

Dr Carol Hofmeyr – Keiskamma Trust, Eastern Cape

Topic: Confrontic AIDS and poverty with Art in a small Eastern Cape Community.

The Keiskamma River mouth is in a beautiful part of the country. Sadly the harshness of life there results in 2 to 3 funerals each week. Poverty there means not knowing where the next meal is coming from, having furniture and possessions put out by the local council and a husband with no job. The only riches are cattle. Carol showed slides of a tapestry created by the local women depicting the history of the area including the conquest of the Xhosa nation by the British. This tapestry was exhibited by the National Arts Festival and now hangs in the Parliament building. All art appeals to people in a way that nothing else can.

Another tapestry is based on the Issenheim Altar triptych, which depicts the dying Christ. In the modern version, a Xhosa woman is the centre of the altarpiece – a dying AIDS victim. The Issenheim figures were victims of plague, with the 21st century deaths attributed to AIDS. Women embroidered scenes of good times and happy events in the community, also forms of worship, funerals (very important in their culture) and gravestones. This tapestry, 6m x 4.5m was exhibited on World Aids Day and also in St James Cathedral, Toronto.

Disease, especially HIV, cannot be treated if poverty is nearby. Woman want help for the men who stay at home and drink and beat their wives. There is a need to train and change men, starting with the child.

Ms Thembe Shongwe – Shiselweni Home-Based Care Programme, Swaziland

Subject: Caring for people living with HIV in low resource setting. Challenges of people living with HIV – Mother to Child transmission and stigma

Thembe told a personal story of the work being done by 500 trained carers, many infected with HIV. They ask no recognition for the work they do, sharing food and clothing and holding the hands of the sick people. Their motivation is “love thy neighbor” and they share with the have-nots. Under-resourcing is in the households and there is never a complete set of requirements. A bed-bath became a floor-bath with now towel or rags available, certainly no medicine, gloves, linen or soap. Health services are not available at all hours or even accessible – a visit to the clinic costs R100. There is no clean water, wood for fires must be fetched, and even food such as fruit is subject to the seasons. The resources are the women with their selflessness, dedication, laughter, music and sharing of everything. They have learned the lesson that the disease is for everyone, not just prostitutes. The “vision and the mission” of Shiselweni is to be the hands and feet of Christ in the community. Poor people are unselfish, giving time and knowledge, using whatever is available, begging and borrowing. Worthy care is family involvement, though political and traditional leadership must be included.

Mother to Child transmission is a major concern. Childbirth and care of the infant take part within the extended family, especially where polygamy is practiced. The mother has to accept the situation, and turn to the elderly people for counseling. However, the community needs to be educated that HIV is not the disease of witchcraft. The stigma of having HIV results in sufferers isolating themselves, being excluded by other people. Women lose their conjugal rights, are forbidden to touch food and face hostility from other wives. The only hope is treatment and encouragement to persevere.

“Women, walk on fast, you’re on the right track”

 

 

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