"Memory Books" - Struggling against the Disappearance

The Situation of women and children affected by HIV/AIDS in Uganda

Term Paper (Advanced seminar) 2009 17 Pages

Health - Miscellaneous


Table of Contents

1. Introduction

2. Uganda
2.1 HIV/AIDS in Uganda
2.2 Uganda - Your Women and your Children

3. NACWOLA and the “Memory Books”
3.1 NACWOLA and the “Memory Project”
3.1.1 The “Memory Books”
3.1.2 The “Memory Books” – Difficulties and Possibilities

4. Conclusio


Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.

Carl Gustav Jung

Swiss psychologist (1875 - 1961)

1. Introduction

It was the 1st of december 2008 at 9 o´clock p.m. when I turned on my television and switched to ARTE, to watch a documentary I had read about. It was called “Memory Books – Damit du mich nie vergisst”. I wanted to give it a try although I expected another depressing representation of “Africa” suffering from and dying of HIV/AIDS, as it has been almost common on the World AIDS Day.

It didn´t fulfill my expectations, in no way. I was touched, I was inspired and I wanted to know more about the situation of especially women and children affected by HIV/AIDS and the “Memory Project” of Uganda.

On the basis of this experience, in this paper I will have a closer look at Uganda, at the situation of parents, in particular of women living with HIV/AIDS on the one hand, and on the other hand at the situation of the children affected by the disease and who are left behind after the death of their parents.

First I will start with an overview of HIV/AIDS in Uganda.

Then I will provide an insight into the situation of women in Uganda in association with the epidemic, also concerning the law on domenstic and gender-based violence as on of the main reason for new and disproportionate infections of females, and the impact on children.

Furthermore I will introduce the “Memory Project” and its core, the “Memory Books”, which was started in Uganda through the national NGO NACWOLA (National Community of Women Living with HIV/AIDS), and point out the importance for both of them, parents and children.

The aim of my paper will be to reflect the situation of women and children considering HIV/AIDS, and to provide an insight into NACWOLAs “Memory Project” and its “Memory Books”. I want to overview the structure and to give a review on the goals of this program, as well as on its offered possibilities and maybe inherent difficulties.

2. Uganda

Since the 1990s Uganda is known for its success in fighting the HIV/AIDS epidemic.

In this chapter I will first give a short overview about the history of responses to this challenge and present some numbers and statistics about the victims until today.

The second part of this chapter focuses on the position of women and children. I will discuss the women`s status in the ugandan society, and the problem of domestic violence as well as its crucial impact on the health of the female population concerning HIV/AIDS. And I will give a short insight into the growing Orphans and Vulnerable Children (OVC) crises.

2.1 HIV/AIDS in Uganda

“After escaping the bullets and the guns, AIDS was here. After hope, the monster.”

(Miria Matembe, Minister of Ethics and Integrity, Kampala, Jan. 13, 2003, in Human Rights Watch 2003)

In 1982 the first HIV/AIDS case was identified in Uganda. Wichcraft caracterized the initial responses of comunities admist lack of clear government statement to HIV/AIDS. But soon after, in 1986, due to a very fast reaction of policy makers, especially because of President Yoweri Museveni who spoke for a strong leadership in fighting the spread of te epidemic, the first AIDS Control Program was established. It focused on providing safe blood and the prevention of HIV infection in health care settings. In 1992, the Uganda AIDS Commission (UAC) was launched for coordinating the government response to HIV/AIDS. (Human Rights Watch 2003; Uganda AIDS Commission 2006)

In the 1990s the percentage of infected people decreased steadily from 18,3% with some centers of about 30% to an average of 6% in 2002, in regard to the favourable prevention policies. (Uganda AIDS Commission 2006)

Now the prevalence rate is rising again. Primarily women speak out against the popular ABC approach mostly due to their lack of power and possibility to discuss safer-sex, especially in their marriages. Women are looking for an alternative, for a change in the society because the risk groups have shifted. (Das 2007: 21)

Currently are about 30.884.000 people living in Uganda, aproximately 940.000 are infected with HIV. 480.000 of them are women (15+ yrs). (WHO Working Group 2008)

2.2 Uganda - Your Women and your Children

“I´m tired of keeping trying to change consciousness. We need to change the law.”

(Deborah Kaddu-Serwadda, Women´s Rights Activist, Kampala, Dec. 10, 2002, in Human Rights Watch 2003)

Ugandan women are disproportionately affected by HIV/AIDS, as well as married couples, who account for 60% of all new infections. One and maybe the most important reason is the existance of unequal power relations in their daily lives, the frequent dependency of women on men. The most dangerous outcome of this is domestic violence, from with the state is failing to protect them. (Human Rights Watch 2003, Wakabi 2008: 285)

Uganda is party to international human rights treaties and ratified the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) in 1985. (Amnesty International 2007) In the Ugandan Constitution, Article 33(6) provides that “laws, cultures, customs or traditions wich are against the dignity, welfare or interest of women or which undermine their status, are prohibited by the constitution”. (Ugandan Constitution 1995) Nevertheless there are still customary laws and practices which conflict the Constitution, as on inheritance, land ownership, widow inheritance, polygyny, forced marriage, bride price and guardianship of children. (Amnesty International 2007: 9)

The Penal Code Act of 2007 deals in Chapter XIV – Offences Against Morality - with rape and other sexual an gender-based crimes, for which is also provided a definition.[1] What is not considered or explicitely defined as rape, is forced sex in marriage, one of the most dangerous because live threatening occurences and forms of domestic violence considering HIV/AIDS.

Due to the payment of “bride price” by a man to the family of a woman he wishes to marry, perceived as purchasing his wife`s sexual favors and reproductive capacity, man mostly see themselves entitled to dictate the terms of sex and to use force to do so. Violence, or the threat of violence deprive especially married women of the opportunity to negotiate safer-sex with her husband. Besides that, abandonment from their home by doing so or by talking about HIV/AIDS often appears as more terrifying for the female majority because of their economical dependency. So they acquiesce to their husbands` demands for unprotected sex. (Human Rights Watch 2003; Leclerc-Madlala 2001: 36 Agostina 2000: 20)

Even when men know, that they are infected they often refuse to use condoms “... because he didn´t want us to leave us alive to remarry... ” or they they don´t want to admit to the truth, to the disease. Sometimes it is just the bitterness of being infected what keeps them having unprotected sex. They forbid their wives to get to know their status through testing, or tell them that it has been herself who brought the disease if the status was positive. If so, she has to fear to be beaten to death or evicted from her martial home. (Human Rights Watch 2003; Wilson 2002: 30)

Most Ugandan women secretly get to know that their husbands are infected, they attend HIV/AIDS clinics in secret, they join support groups in secret and live with the assumption of also having infected the children in secret. It is fear that prevents women from accessing live saving information, from being tested and from receiving HIV/AIDS treatment and counselling which could also have saved the lives of their children. (Human Rights Watch 2003)

In 2007 the number of children (0-14yrs) living with HIV/AIDS has been about 130.000. The estimated number of current living orphans (0-17yrs) due to the epidemic at this time was 1.200.000. (WHO Working Group 2008)

These are two of the dramatically results of the disease concerning children, partly because of the reasons discussed above.

Mother-to-child transmission (MTCT) could be prevented for one, if there would be sufficient ART for pregnant women. Unfortunately just 34% of them received ART to avert MTCT in 2007. (WHO Working Group 2008)

Then again, if the government would be able to protect women from their violent environment by changing and enforcing the law in such a way that they didn´t have to fear battery or abandonment, and to equate their social status and rights to the of the male population, they would actually be capable to seek help, to attend a hospital for HIV testing and to hopefully receive the needed medication for prevention of, at least, the transmission. (Wilson 2002: 30)

Not only the number of infected women is rising, it is also the number of Orphans and Vulnerable Children (OVCs). Considering this, the Uganda AIDS Commission (2006) stated that “...communities perceive orphan care among the greates burdens of the epidemic.”

Wilson (2002) already referes to this problem and points out that speaking of communities which will “cope” really means that women will (have to) do it. This will have consequences on the burden of reproductive work and in addition for the participation of women in politics, the economic sector, and so on. But the OVC crisis also leave children to take care of children which futher leads to less school attendence in order to work to feed themselves and their siblings. Girls will occasionally have to engage in survival sex.

The probably most devastating thing for children above all is probably the loss of their parents, their aunts and uncles, their family often without knowing what they were dying of.

Pamela Das (2007) dedicates an article to Beatrice Were, a woman who co-founded the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA). She, like a lot of women do, discovered she was HIV positive several months after her husband died of AIDS. She had to fight with her in-laws to keep her property and her children, and not to be forced into marriage with her brother-in-law. When she went public with her HIV status in 1995 she reconized she had made a grave mistake, not because of her decision to do so, but because of not telling her children first. Here she detected the importance to speak with children about the diseas, to prepare children for bereavement and document their love, memories, to give advices and to post wishes for their future. Because of that Beatrice Were felt confident to start the “Memory Book Project”, which until now remains successful and important, for parents as for their children.



123. Definition of rape.

Any person who has unlawful carnal knowledge of a woman or girl, without her consent, or with her consent, if the consent is obtained by force or by means of threats or intimidation of any kind or by fear of bodily harm, or by means of false representations as to the nature of the act, or in the case of a married woman, by personating her husband, commits the felony termed rape.

124. Punishment for rape.

A person convicted of rape is liable to suffer death.” (Ugandan Penal Code Act 2007)


ISBN (eBook)
ISBN (Book)
File size
490 KB
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Institution / College
University of Vienna – Institut der Kultur- und Sozialanthropologie an der Universität Wien
Afrika Uganda NACWOLA HIV/AIDS and women HIV/AIDS and children "Memory Project" "Memory Books"



Title: "Memory Books" - Struggling against the Disappearance