Published by Oxfam Australia for Hillcrest AIDS Centre Trust, 2008
AIDS
Acquired immunodeficiency syndrome
ARVs
Anti Retroviral (Therapy)
HIV
Human immunodeficiency virus
JOHAP
Joint Oxfam HIV and AIDS Program
STI
Sexually transmitted infection
RDP
Reconstruction and Development Programme
HACT
Hillcrest AIDS Centre Trust
AIDS
The symptomatic stage of HIV infection, in which a person succumbs to illnesses because of the body’s inability to fight infection and disease
HIV
A virus that weakens the immune system, ultimately leading to AIDS.
Integrated Touch
A physical massage therapy designed to lower
Therapy
physiological and psychological stress
Matric (Grade 12)
The final year of secondary schooling in South Africa – also referred to as matriculation.
Molweni
Molweni is a township on the outskirts of Hillcrest.
Primus Stove
The brand name of a particular portable paraffin stove
RDP houses
Low cost government supplied houses
The Respite Unit
A place where those who are ill can receive medical and psychological care and support.
The Struggle
Refers to the time of the struggle against, or challenge to, apartheid in South Africa
Woza Moya
An art and craft project at Hillcrest AIDS Centre Trust. 3
4
Hillcrest AIDS Centre Trust, also known as “the centre”, works in the Valley of a Thousand Hills, outside Durban in KwaZulu -Natal, South Africa. From its beginnings in 1991, HACT has grown to offer a range of services, and is now a haven of hope and respite for many South Africans. The organisation’s work and growth has been documented through a process of guiding selected staff and beneficiaries to write about their stories and experiences, and interviewing patients at the respite unit.1 Many of the women who work with HACT have overcome tremendous challenges through their own resolve, and through the love and support received from others at the centre. HACT’s own diverse programs have grown with emerging needs, all focusing on one important goal: giving love and practical support to those infected and affected by HIV and AIDS.
1
The respite unit is a place where those who are ill can
receive medical and psychological care and support.
The Hillcrest AIDS Centre Trust is a faith based non-profit organisation and a registered Trust. The Trust works to address the impact of the HIV and AIDS pandemic in a practical, holistic and multifaceted way. Its programs include: COUNSELLING
• Woza Moya: this project aims to
EDUCATION AND TRAINING
Counselling is offered free of charge to
empower people infected with and
HACT presents educational talks and
individuals, families and couples. It includes
affected by HIV and AIDS to become
workshops to various groups. These are
pre-test, post-test and crisis counselling
economically self-sufficient, by producing
particularly aimed at young people, to give
associated with HIV and AIDS. The centre is
crafts in their own environments.
them the knowledge they need to make
a registered Department of Health rapid HIV testing site, and offers baseline CD4 counts.
informed decisions about their health. • Izingadi Zethemba
These help people know what stage of the
(Gardens of Hope):
SCHOOL FEE FUND
disease they are at, and enable nurses to
This horticulture project aims to help
This fund assists with school fees, uniforms,
advise, treat and refer them appropriately.
people infected and affected by HIV and
stationery costs and occasional school trips
AIDS become economically self-
for the children of families that are in the care
FEEDING SCHEME
sufficient, by producing plants and food
of HACT.
Families affected by HIV and AIDS, who
in their own environments. They can
are in desperate need, receive weekly food
use the food for their own families and as
For more information on the Hillcrest AIDS
parcels until their crisis is over, or until they
a source of income.
Centre Trust, visit www.hillaids.org.za.
are either earning an income or receiving government grants.
HOME-BASED CARE Nursing care is provided in the community
INCOME GENERATION
by home-based care volunteers. These
HACT has found that many HIV positive
volunteers are trained and provided with
people develop full-blown AIDS sooner
uniforms and incentives in the form of food
because of malnutrition and poverty, and
parcels.
started various income-generating projects in response, including:
THE RESPITE UNIT The respite unit offers care and support to
• second-hand clothing: people are given
those who are ill and have no caregiver at
bags of clothes for a nominal fee, which
home. Here they will either recover from
they can sell to generate an income.
acute illness or die with dignity.
7
“I saw God in myself and I Ioved Her. I loved Her fiercely.” – Ntozake Shange KwaZulu-Natal province has the highest HIV prevalence in South Africa. People living in poverty bear the brunt of this pandemic. Women often carry a greater burden in caring for the sick, the dying, their families and themselves. The stories in this document reflect the lives of many women and men living in South Africa. They are shared by local women, in their own ordinary and special voices. These are their life experiences, their successes and their dreams.
About the process
been touched by simple acts of caring, The stories were written by a selected group
reminding us that people do create miracles.
of women who either work at the Hillcrest AIDS Centre Trust or are beneficiaries of its
We have tried to allow the voice of each
services. Instead of writing their stories for
person to come through. These are their
them, we encouraged them to do the writing
stories, their sharing, and their contributions
themselves. We guided the women through
to enriching the lives of others through
a practical, step-by-step process of learning
their openness.
writing tools, and in this way they developed their stories.
The first story, by Princess, gives the reader a backdrop. She provides insight
Women in the group shared many changes
into the daily experiences of many people
that have touched their lives. A recurring
in South Africa, particularly women from
theme was those people who had stepped
rural and semi-rural areas where poverty,
in and made a world of difference: by simply
unemployment and gender inequality come
listening, taking an interest and offering
together to fuel the impact of the
support or a connection. Again and again,
HIV pandemic.
these stories highlighted compassion, open8
may at times be bleak, but so many have
heartedness and love. People’s daily lives
w ...We have tried to allo on to the voice of each pers are come through. These ing, their stories, their shar to and their contributions hers... ot enriching the lives of Some stories, like those of Jabu and
Thembi shares the profound changes that
For women in particular – who have been
Busisiwe, are painfully honest. Two shy
led her from domestic work to running her
socialised to care more for others than for
women, both were committed enough to bare
own business designing and sewing clothes.
themselves – reflection and writing is a
their souls for the group and the reader. We
Hlengi, from the Woza Moya craft centre, tells
chance to look inward and start caring for the
owe them a big thank you; it is not easy for
us how a chance encounter with a special
self. Both women and men need a chance to
a woman in this particular context to speak
person transformed her life.
share their stories. This is therapy.
These stories weave together the lives of
Most importantly, this process reflected the
the storytellers and the positive experiences
words of M. Scott Peck: “We have been
The women from the respite unit – Sphe,
that have come from their involvement with
looking for the burning bush, the parting of
Phili, Cindy and Gugu – share why the
HACT and its programs. In their voices, the
the sea, the bellowing voice from heaven.
unit is truly a “home away from home”
far-reaching and unexpected consequences
Instead we should be looking at the ordinary
through their stories, and the interviews
of simple acts and deeds come alive.
day-to-day events in our lives for evidence of
about having an alcohol problem or being HIV positive.
they conducted with patients. The anecdote
the miraculous”.
by Gugu is a particularly poignant piece,
In allowing this group the chance to explore,
powerful in its simplicity.
share and tell their stories, JOHAP and Oxfam Australia have helped to enrich their
We are also given a glimpse of HACT
lives. They have gained new skills, and had
through the eyes of its two longest-serving
an opportunity to reflect, share their stories
staff members, Rita and Zandile.
and receive support. This is important work.
Gladys Ryan facilitator and writing mentor
9
Our stories
by Princess Mkhize Princess Mkhize (lovingly known as Mam’ Princess) is a grandmother, mother and nurse. She says that working at HACT has given her satisfaction in the later years of her life. This story gives the reader a sense of the stark reality of HIV and its impact on the most vulnerable. It provides a grim picture of the life of one person and her family, but also insight into the roles that individuals and HACT play in the lives of the many people who use their services. A person’s life is like a piece of artwork or
wouldn’t take me back to a hospital patient’s
It was on the morning of my second month
a picture. It is made up of many different
bedside. I phoned HACT and I was given an
when I received a call from one of our home-
strokes of pencil and paintbrush, of different
appointment for an interview for the following
based carers who lived in Molweni2. She
colours. It may be difficult for a person who is
day. A week later I received a call notifying
requested that the nurses come over to
not the artist to comprehend how the picture
me that I had been hired. I was to start
Molweni to see a bedridden client. We met
is going to look when it is complete.
duties on 7 January 2002. Little did I realise
with the caregivers at an arranged spot from
that my association with the HACT would
which we proceeded to the client’s home.
be so satisfying.
As we got out of the car we saw a woman
As employees we spend at least eight hours of the day at work. Colleagues,
lying forlornly on a grass mat (ucansi).
employers and those we interact with
My job entailed working in the office and in
She appeared to be very ill. The client was
become more than individuals or working
the communities of the Valley of a Thousand
trying to give instructions to a little girl who
pals. They become family.
Hills, providing counselling and treatment,
was trying to pump a primus stove3. To our
taking blood specimens, conducting home
amazement, the little girl was cooking rice.
It was in November 2001 that I received a
visits and supervising home-based carers,
The client, Joyce, was trying to supervise her
call from a friend of mine informing me of a
treating clients at home (bedridden ones),
daughter cooking the meal for her younger
nursing sister’s post at HACT. I had often
making referrals to local clinics, hospitals and
sister and her mother. The little girl was five
told her that I was tired of staying at home
hospices, providing health education, and
years old and her younger sister was three.
and that I preferred to get a part-time job that
initiating projects such as gardening
The mother was helpless. Her voice was
and support groups.
10
barely audible. She was doing the last thing that she could still do – to ensure that her children got a meal. She had crawled out of her room and was lying there in the sun, probably in a bid to attract the attention of neighbours so that she could get help. Imagine the emotions that tore our hearts at the sight of a five-year-old forced to do a task like that. When I raised my tearful eyes to look at my colleague, tears were running down her cheeks. I had never seen a child of five years having to cook a meal and care for her sick mother. The home-based carer quickly called the children away. She took over the cooking. We nurses helped the patient back into her room and put her on her bed. My colleague started with the consultation. On taking a history we established that Joyce’s spouse was staying with another woman somewhere. He had neglected her since he had learnt about her status. He had refused to have a blood test done and even worse, both parents had no identity documents. They were both from Malawi and had eloped from their home country. Both children had no birth certificates. The five-year-old had swollen neck glands and was coughing continually. On checking the medication in the house I found that the five year old was on TB (tuberculosis) treatment and was also HIV positive. She was also responsible for giving her mother treatment on her mother’s instruction. She reported that her mother sometimes said she did not want to take her medication.
2
Molweni is a township on the
outskirts of Hillcrest, KwaZulu-Natal, South Africa. 3
A primus stove is a portable
paraffin cooking stove
Joyce was emaciated and dehydrated. When
mentally and psychologically unstable. She
One day Joyce had said during one of my
we explained that we needed to take their
desperately wanted to return to Malawi to
visits: “Sister, when I eloped from my home,
mother quickly to the clinic, the older child
seek her parents’ forgiveness.
I did not think about what would happen to
cried. My colleague and the home-based
me and how my future would be. I had a
carer drove the client to the local clinic while
She was receiving a weekly food parcel as
vague idea that one day I would go back
I remained with the children. By then we
well as transport money to visit the hospital
home to my people and ask them to forgive
had been joined by the neighbour who had
for her review dates, both for her and her
me. All the other things were not important,
been helping the client and the children
daughter. The centre had tried to get her
after all I was with my lover. But from what I
when she was home. After some persuasion,
to do beadwork and to sell second-hand
see now I realise that I am destined to leave
she agreed to look after the children. She
clothing so she could make some money, but
this earth here. My parents and relatives will
was to take the children to the day care
she had not been able to cope.
never know whether I’m still alive or dead. I’m now being cared for by strangers that have
...The family was looked after by the caregiver, neighbour, nurses and social worker. The father of the children was eventually located by the social worker, but only visited the children once and never visited their mother in hospital...
become my most loved friends.” Inwardly I had answered her thinking that neither had I known that I was destined to meet and walk this distance with her. And that though the artist was about to complete His work, these were the last strokes of the paintbrush. I then remembered what my grandmother would have done in a situation
centre during the day and collect them in the
Joyce died six months later. She had learnt to
as serious as this. Yes, she used to
afternoon – and of course feed them, do their
trust her caregiver and the nurse and some
say, in the midst of suffering, illness,
washing and supervise treatment at night.
counsellors. She took us as her mothers.
helplessness and fear, and even
The social worker was phoned and the plight
She had already accepted her plight and
when a person has to make a
of the children reported. Their mother was
had made arrangements for the care of
decision to accept the inevitable
eventually transferred to hospital. When the
her children. She had also come to accept
like death, prayer is the best
five-year-old was due to go for a review at
the rejection by her spouse. Following
solution. I then did that.
King Edward Hospital, the kind neighbour
counselling sessions, she had begun to
took her there. HACT provided them with
shed her attachments. The last one was her
money for transport.
attachment with her children. She would look deep into our eyes as if to make sure that we
The family was looked after by the caregiver,
meant it when we told her that her children
neighbour, nurses and social worker.
would be well taken care of. Her spouse was
The father of the children was eventually
traced again and notified after her death. The
located by the social worker, but only visited
home-based carer reported her death to the
the children once and never visited their
community structures which, together with
mother in hospital. Joyce’s condition was
the neighbours and HACT, helped ensure
fluctuating. She would improve for a while
that Joyce’s funeral was dignified.
and then relapse again. She was emotionally,
13
by Rita Shange Rita is the counselling manager at the Hillcrest AIDS Centre Trust. She likes people and communicating. She is compassionate and believes that this is her calling. I was born in a place called St Wendolin’s.
week and made a little bit of income this way.
In 2004 I was promoted to counselling
We were a family of eight. My mother was
In addition, people were invited to attend
manager. HACT has played a very big role
a housewife and my father worked as a
courses on home-based care so that they
in my life. I am what I am today because of
weaver at a big company. Although he
could support the sick in their communities.
this family.
After I completed high school I did not go to
HACT developed us in many ways. They
My hope for the future is to open a project
university as my parents could not afford it.
sent me for different courses to equip me
similar to HACT in the community I come
I stayed at home for two years with no work
with knowledge. I completed a counselling
from, creating job opportunities and helping
and ultimately fell pregnant. Although my
course, courses on TB, STIs and home-
with the development of people.
parents were angry and disappointed, they
based care, and eventually was trained to
fell in love with my beautiful baby girl whose
be a trainer. Through these skills I am able
name is Nokuthula.
to assist clients in a meaningful way to solve
didn’t earn much, he was everything to us.
their problems. I am so grateful because I In 1996 I was employed by HACT as a
realise that I have been able to change other
counsellor and educator. At the time there
peoples’ lives. Hillcrest AIDS Centre Trust
were just the two of us and we were both
also changed my personal life because I had
placed in Molweni, on the outskirts of
never thought of doing an HIV test, yet now I
Hillcrest. Our task was to provide HIV and
know my status.
AIDS education in the community. Initially it was really difficult because people refused to come to the centre because of the stigma around HIV and AIDS. So instead, we introduced projects such as sewing, beadwork, painting and gardening. HACT paid for all training and transport. Beadwork in particular was a hit, and those who were interested were provided with beads. They submitted their work once a
15
by Zandile Shange Zandile is the coordinator of HACT’s HIV and AIDS education department. She has three sons who she loves very much. I come from a family of six – my mum, dad,
When I reached high school, they separated.
brother and two sisters. For a few years we
My dad went to stay with his family and we
were a very happy family with both parents
stayed with my mum. My mum was always
working. Then when I was about nine, things
upset, while also trying to hide it from us.
changed dramatically. My father began abusing alcohol. He lost his job and was
During my adolescence my parents finally
fired from work and my mum had to work
divorced. At the same time, I fell pregnant.
very hard for the family to survive. They were
My mum was mad about it for awhile but
always fighting — whatever my mum tried
gave me as much support as she could. At
to do for us to survive, my dad abused it. He
the same time, I had to leave school for the
would even steal her money.
baby and did not get support from my partner because he was also not working. I later had the responsibility of raising my child without a father because he was killed in a car accident. I was a single mother who, despite my efforts, was unemployed.
Employment and empowerment My mother encouraged me to go back to
violence and sexual abuse; and children
Not only have I been encouraged by my
having to head households after losing
colleagues at HACT, but so have my children.
parents to AIDS.
Everyone knows about my status and that
school for my matriculation4. I passed but
made life much better for me. Also, I was able
she did not have enough money for me
It was part of my challenge to make them
to motivate others by my disclosure and living
to do tertiary or any other training. I was
aware of these issues. I was empowered
positively. I have seen many people change
unemployed for almost eight years.
through the workshops and training
their behaviour because of this simple act
organised for us so that we in turn could
– choosing to go for tests and trying to look
help communities.
after themselves better.
abused by my partner though I thought he
I was also trained to be a trainer of
HACT has developed me a lot and I have
loved me in his doing so. There came a
counsellors on HIV and AIDS. I was able
learnt so much in these few years. I now
time where I could not take it anymore. I
to listen passionately to other people and had
know about computers, I am networking
ran away and hid at my grandmother’s
empathy for them; so many of their stories
with other organisations, meeting with high
place in Hillcrest.
reminded me of my own childhood and youth.
profile people through workshops, and
My grandmother was involved in
Then I found out I was HIV positive. This
community projects. She organised therapy
was such a shock to me. I had been trying
I am now the coordinator of the HIV and
for me (stress and training healing). I got
to do what we encouraged our clients to
AIDS education department which involves
involved and was exposed to HIV and AIDS
do and here I was positive. It wasn’t easy
so much more responsibility and I am
issues. Very soon I was employed by the
at first. Especially since I had done a test
learning every day.
Hillcrest AIDS Centre Trust as an HIV
without counselling as I thought I knew the
and AIDS counsellor.
outcome would be negative. I had no idea
My life and the lives of my children have
of the impact this would have on me. I went
improved so much since I joined the
In this organisation I was exposed to the
to counselling and finally found the courage
Hillcrest AIDS Centre Trust.
shocking environments many lived in – high
to share with HACT staff. I received so
rates of unemployment and poverty; women
much support without a question. This was
being sexually and physically abused by
amazing to me.
During this time I fell pregnant again and gave birth to my twin boys. I was physically
their partners; children exposed to domestic
developing my skills.
4
Matric/matriculation (or grade 12) is the final year of
secondary schooling in South Africa
17
za Moya A st or y fro m W o
by Hlengiwe Kwela Hlengiwe Kwela is a mother of one baby Mhle. She is an artist and works in the Woza Moya Craft Centre I am one of the lucky people who had the most loving and supportive father anyone could wish for. He is the one that recognised my talent for drawing before I did. He wished to take me to art school because he believed in me. Unfortunately he didn’t live long enough to see me fulfill my dream. When he died it was difficult for us to manage emotionally and financially. That is when I started doing community service as a volunteer at the Valley Trust. The Valley Trust is a community centre that helps unemployed matriculants. I was working there as a switchboard operator (volunteer). By the second week I was placed in a program called cadets (which involves helping unemployed youth with life skills) I did my fieldwork at Embo Craft and while I was there I attended a big craft exhibition at the Durban International Convention Centre. Many African countries were represented. I met Paula Thomson5, who was there on behalf of the HACT. I told her about my training and she said that if I ever needed a job she could provide one for me. My training came to an end and I started working at HACT in a temporary position. I got hooked again into craftwork, sewing and drawing. It felt like this was 18
where I belonged.
I started training with a group of five women, making felt flowers. They ended up earning money out of these flowers. Then I met Amanda Laird Cherry (a fashion designer). She wanted a hand stitched t-shirt made. With Paula’s encouragement I ended up making many of them. I ended up working permanently at the centre. I didn’t stop training others, but came to do other jobs as well, such as handling donated stuff like toys and clothes and books. I was very proud of myself because I shared my skills for talent with others and even created little jobs for them. Working at HACT opened my eyes. I learnt so much. Not only have I been able to empower myself, but I can see the contribution I have made to the lives of other women by sharing with them the skills I have. This gives me endless joy.
5
Paula is the manager of Woza Moya.
The death of my father became the light and miracle in my life. Wherever he is, I know he is very proud of what I’ve become.
Changing preconceptions by Sphe Gamede Sphe is the supervisor at the respite unit. She is a mother of one and loves the work she does. When I finished matric, I realised that I had to
Being a hero by Philisiwe Zondi Philisiwe Princess Zondi is a caregiver at the respite unit. She is shy but considers herself a good listener. Phili is the proud mother of four children – two boys and two girls.
do something about my life. My family was not rich, but poor. I came from a poor area and knew I had to work very hard to find a job. But the big question was where and how. I was stuck in a black tunnel without any resources. When we moved home, the new place seemed to be promising, with lots of possibilities for young people. My older sister was always on my side, encouraging me. I had always wanted to be something. I
A home away from home. This is the respite
wanted to be a nurse.
unit. Patients get love that many don’t get at home. Carers treat patients like their
I joined the Valley Trust, a non-government
brothers and sisters.
organisation, in their cadets training (this is a self- development and empowerment course
Since I began working at the respite unit, I
for young people). When we had to write
have learned so much and gained experience
about our visions and goals, I spoke to the
around HIV and AIDS. I’ve learned about
facilitator about how much I wanted to help
integrated touch therapy6 and memory box7
the sick in the community. I also shared that
work. These have made a huge difference in
I wanted to be a nurse but that I did not have
the work I do.
finances to study.
For me, working at the respite unit is a
A few days later she received a call from
labour of love. I am shy and not talkative but I
HACT who needed a person to help in their
am a good listener. And sometimes this is all
respite unit. At first when they told me I was
a person needs. Providing palliative care is
going to work at the respite unit I was very
not easy but with love and caring you
anxious as I had little knowledge of what it
can be a hero.
was all about.
I got there to find six patients who were
coming in to die, but most are working now,
Because of the HACT I can now diagnose
terminally ill with AIDS and I shook with fear.
looking after their families. And those who die
patients and give proper medication, give
I had no idea what to do. I thought about
do so in peace, with dignity and unconditional
injections, take blood, and train other people.
why I should get involved in helping with this
love. Some people who come in have been
I have also learnt to never neglect God
massive epidemic that threatened millions of
neglected by their family members and
because He is in everything that I do at home
my brothers and sisters daily.
community and some don’t even want to
and at work. They say life should be lived, not
disclose. We show them love by touching
imagined, and mine has been better since
Some said that when they were told they
them and holding their hands, which means
I began working at the “home away from
were HIV positive, they believed they were
a lot to them.
home”, the respite unit.
for them to live for. Most of them were strong
Looking back I can see that working at
6
enough to tell their family members, but
HACT has been a privilege for me. Helping
designed to lower physiological and psychological stress.
many of them did not want to say anything. I
people die in peace, with love and dignity
7
also didn’t know how you could get infected
helps you to feel good. If a patient gets
their mementoes and record their experiences and special
and was very scared to help other people.
better we rejoice but we also feel the
memories.
going to die and that there was nothing left Integrated Touch Therapy is a physical massage therapy Memory Box work involves helping people collect and keep
devastation when we are unable to help a Patients were dying with home-based
patient. The respite unit has become a
carers around them holding their hands and
home for me and I make sure that I
massaging their feet. They were welcoming
always help my brothers and sisters
and I felt as if I was home. I was briefed on
in their pain, helping them to be
work I would be doing and trained on a range
pain free.
of HIV related issues. My conscience spoke clearly but I still doubted that this was what I wanted to do. Now that I have been working at the respite unit for two years, I can proudly say that miracles happen every day. People are
21
Learning through hardship and love
She disclosed her problem to the teachers of
by Cindy Mchunu
was provided with food, shelter and better
her school, her friends and the community, and they gave her help and support. She education and she realised that there are
Cindy is a home-based carer based at the respite unit. She is the youngest in her family and lives with her grandmother.
people who care. After she passed matric, the girl started volunteering at the respite unit where she was introduced to integrated touch therapy and many other positive things.
I’ve learned that it takes time to fulfill your dreams because of good and bad experiences.
That girl was me and I am proud because I have the most precious gift – the gift
Sometimes when you are growing up you
of knowledge.
come across good and bad things and they might distract you from your journey to
I have embarrassed those who discouraged
success. Like the girl I know who lost her
me and learned the hard way. I have learned
parents in a car accident when she was two
determination and dedication.
months old. She grew up without a mother and father and was raised by her granny with her other siblings. There were many painful challenges that this girl faced. She was not allowed to continue schooling after she failed Grade 11. She struggled for her own education then was chased away from home because she went to school when she was told not to.
Being grateful for the changes
Kary is a young woman, brought up in a
beautiful she was and how much they liked
family of five, with both parents, a brother
her smile. Like any other teenager, Kary fell
and a sister. She grew up in a semi-rural area
into the trap. Before she knew it she was
by Gugu Ndlovu
and lived a normal life like other children in
pregnant, frustrated and alone with no-one
her neighbourhood, with big dreams.
by her side. She felt like the whole world was
Gugu Ndlovu is 24 years old and works at the respite unit as a caregiver. She likes to play games and do puzzles that challenge her. She is the mother of two-year-old, Lungelo, and they love to go out for milkshakes together. A young woman sits on the veranda staring at
shutting down on her. Eventually, she gave She went to school at a local primary school
up everything – her life, her hopes, her
– a regular school with broken glass and
big dreams.
old, falling desks. She managed to finish somehow, and started high school at a
But after Kary had given birth to a cute little
boarding school which was known to be of
boy she decided that nothing was going to
high class, with students who loved showing
hold her back. She attended leadership and
off. However, Kary had nothing to show off
self empowerment courses at the Valley Trust
with but her enthusiasm, drive to learn and
in Botha’s Hill, where she was introduced to
wish to do her best.
Mary Ann Carpenter9 who took her in and introduced her to the Hillcrest AIDS Centre
an old building that looks like a church. This
There were boys of course, noticing that
was the hiding place for many community
Trust. It was then that Kary’s life made a
Kary was growing up to be a fine and good-
activists during “the struggle8”.
dramatic change. She was taken to the
looking woman. They also noticed how well
respite unit where she worked as a caregiver.
she was doing and that she had so much
She was educated about HIV and AIDS and
drive and determination to be somebody in
trained in many skills, including integrated
life. So they tried to trap her, told her how
touch therapy, memory box work and how to avoid burnout. Of course there were still challenges in Kary’s life, like dealing with the death of patients and having to counsel their relatives. But all the changes in Kary’s life have made her realise her dreams and have empowered her in a big way. Kary is now skilled, sharpened and ready to conquer the world with the knowledge she’s gained from HACT. Now Kary sits outside her house reading her journal. She realises all the changes in her life. She smiles and thinks to herself: “Thanks to HACT. Who would have thought?”
8
The Struggle refers to the time of the struggle
against, or challenge to, apartheid 9
Mary-Anne is a nurse at HACT
23
Patient 1 pite unit I was living Before I came to the res e my wife ran away alone at home becaus was positive. From when she discovered I It hurt because I then, I was living alone. myself. couldn’t do anything for this hospice and One of my friends knew ause they had told me to come here bec I decided to give it helped his brother. So must be better than a try because I knew it e. how I was living at hom pite unit I was fully When I came to the res s a change in my welcomed and there wa ple and peo life. I got attention from
d care of me. I everybody here took goo rect treatment for even got good and cor de me be better HIV and that’s what ma right now. s that I’ve learned There are many lesson it comes to testing in life, especially when ing ARVs correctly early and eating, and tak e. I’ve learned and at the indicated tim ortant role in a that food plays a very imp importance of person’s body and of the people could do personal hygiene. So if homes it can the same thing in their are living with o wh help many people undiscovered HIV.
Patient 2 There has been much change since I came to the unit. I can only say I am thankful. I didn’t know my status before but now I do and I’ve even started taking ARVs. The caregivers are very nice to us, and caring, although some of them have mood swings. But that doesn’t worry me. Before I came here, things were bad. I would get sick. I had infections that would keep me in bed for a very long time. But since I came here, I haven’t had any infections. And even if I do, people here are very sharp. They give you the medication and you get better in no time at all.
Patient 3 I was at home very sick; thinking I would never be okay; thinking about my two boys who are young and really need me. I’m the type of person who likes to do things for myself. I was very ill and not able to do anything, and having to seek help all the time. My family members who used to visit me tried to encourage me to go to hosp ital, but I refused because I was afraid of how they would treat me there. They told me this one was different and so I let them take me. They took me to the Hillcrest AIDS Centre Trust respite unit where the wom en treated me well and welcomed me. It was as if they knew me. I was physically and men tally better. I know I can live longer and look after my kids. I want them to have a brighter future with me by their side. I’m goin g to start getting a grant soon because of the respite unit. They helped me get my ARVs and took me to register for a gran t. I have shared with them my story but they never treat us badly. Thank you. I will never forget you. May God bless you.
Patient 6
Patient 4 When I first came here I was
not happy
to be here. But when I saw that people actually get discharged her e, this gave me courage. The courage to believe that I can survive this. There are a lot of people surviving in this place. So I stayed and everyone
treated me as if
I was at home. It was terrifyin g to see dying people because we all got along with each other. And to see one of you die… What I like the most is that
we are pressured to eat healthy food and if you can’t eat by yourself they spo on feed you. I was afraid of the side-effe cts of ARVs but I’ve been on them for a whi le and haven’t had any other sicknesses. The lesson I’ve learnt in life is that you can live with HIV and I wish I cou ld tell the whole world to test while it’s early. Then you can get treatment early and live again.
Patient 5 I When I came to the respite unit, was it ght thou I use didn’t like it beca for dying people. I found that it was were where the love is, and people who with and dying were dying in peace of love dignity. The caregivers have lots the and they respect patients. They know unit I patients’ rights. Here at the respite care I’ve feel at home. I am grateful for the oviral -retr (anti s ARV on now received. I am t. gran bility disa a ng therapy) and am getti e”. hom from y This is truly a “home awa
An anecdote from
I feel better in terms of health. The people are so nice. They talk with you, laug h with you. Sometimes I even forget that I’m sick because they keep us occupied . We don’t even get time to stress about our sicknesses. Life was hell before I came here. I was sick. It even came to the point where I thought I was going to die. In fact, I wanted to die because I would get all sorts of infec tions all at once. I was always in pain. But now I am better.
Gugu
m e him to the bathroo I ask him if I can tak his ds no st Ju n’t answer. for a bath. He does Is all. k at me at head. He doesn’t loo see himself as he es he too shy or do k: “Can I remove the helpless? Then I as wet at me and says: “I blankets?” He looks at down and then back the bed”. He looks He it. I’m incontinent.” me. “I didn’t mean ile. sm d an nd ha ld his is weeping now. I ho He d.” be the sort out “It’s okay, David. I’ll first time since he the r Fo smiles back. help rm smile. I couldn’t came. He has a wa “I lf: se d thought to my it: I wept with joy an made him smile”. tter or do I sit and
lted today. He has defau David was admitted ng very quiet. Somethi on the ARVs. He is ated badly, maybe tells me he was tre , I don’t know. He because of his status about When you ask him doesn’t talk much. thinks d an ath a deep bre his family he takes k tal t no “I’d rather for a while and says: w”. He looks down no for about my family me e. When you next co and then to the sid if a very cold look, as to him he gives you ybe going to die?” or ma he is asking “Am I tion. it’s just my imagina
get be Do I pray for him to d? g life goes to an en watch while his youn his ars old and he has But he’s only 23 ye . en ev s am dre ; him whole life ahead of
25
by Thembi Ngcobo Thembi is a dressmaker and designer. She was unemployed when she first came to HACT and was helped through the income generating project, which involves buying and selling donated second-hand clothing. I am the mother of two lovely children who
business and I no longer work like a slave for
had been working as a domestic worker
someone else. I am my own boss.
and living in a shack for a very long time. Following on this, I worked in a factory and
Since being involved with HACT my life has
was badly affected by the chemicals and
changed completely. I’ve built a nice home
had to leave.
and expect more in my life. I plan to extend my home, register my business and buy a car
Somebody told me about the centre in
so my business can grow.
Hillcrest which gave assistance to people who were not working. I started there buying
In addition to my dressmaking and
second-hand clothes and selling them to
design, I offer catering, decoration and
people house to house. This money helped
baking wedding cakes.
me support my family. I am thankful to As time went on, HACT granted me a
HACT for their
learnership. In this way, I was
love and support
able to study fashion design
and all they have
– something I am passionate
done for me. For
about. I have now started my own
giving me a chance to simply express my feelings and find hope that I can fulfill my dreams.
by Jabu Mthembu Jabu is a mother of four and the sole breadwinner. She does beadwork at Woza Moya and assists with home based care. I am 35 years old and have four children
I was a poor women and I tried my way to
– three boys and a girl. My mum and dad
make ends meet. I would earn small bits of
passed away a long time ago. My mum and
money for gardening and other jobs in the
dad had seven children.
neighbourhood. I could earn sometimes 10 rand (AUD $1.40) or 20 rand (AUD
When I found out I was HIV positive I felt
$2.80) a day for this. It was really difficult.
very angry with myself for having unprotected sex. I felt guilty and thought that this was
Then one day I met Rita from the
punishment from God for my wrongdoing,
Hillcrest AIDS Centre Trust. I shared
having sex outside of marriage.
with her about myself and my life. She suggested I come to the centre and speak
I was also afraid of how my family would
to the counsellor, Zandile. Zandile spoke
respond and treat me. Because of this, I
to me and this made such a difference. I
made some bad choices. I began to drink
began to see things differently and began to
alcohol. I drank very much; day and night.
have hope. I was encouraged to train as a
And I smoked too. I was always drunk. If I
counsellor myself, and did this.
was drunk, I felt better. I also make money through beadwork I do But in reality, I wasn’t better. I was sick and
for Woza Moya. My wish is to have a
slept every day. I was pregnant with child
very good job and help others
number three and the father wanted me to
who are sick with this disease.
have an abortion. I refused to do so and he
This I have learnt from people
left me. I drank even more.
at the centre. The love and support I have received makes
After three years he came back and said he
me want to give love and support
was sorry. We started a new life together and
to others.
I almost immediately fell pregnant again. He told me I was stupid and that my baby would die. I didn’t sleep from crying all night. In the morning I told him to leave and to this day, I have not seen him.
27
by Busisiwe Nzama Busisiwe was a client at the centre who benefited from the incomegenerating project and from training in horticulture. She has a garden in which she grows lemongrass for sale to the public. I would like to share an interesting story
I got a room for myself and my children
about my life journey. In 1991 my husband
and I did craftwork, selling to people who
was diagnosed with HIV and that was the
sometimes paid or came up with
shock of my life. I had no choice but to
excuses. Difficult as it was, life went
accept the challenge and continue with my
on until I met a very kind man
life, especially for our children. But for my
who claimed to offer me help and
husband it was another story. He refused to
support. I thought surely this is a
accept his status.
blessing in disguise — my kids will have proper food to eat.
I prayed and hoped he was going to get better, but unfortunately he passed away in
With a guilty conscience, I did
1997. I was left alone with four very young
not tell him about my status.
children. As we were financially dependent
Life was going well, but then
on him, I struggled a lot to make ends meet. I
I realised I was doing the
kept on praying to God and believing that He
wrong thing and decided
wouldn’t give me more than I could handle.
to break up with him, not
Some days we would go to bed without any
knowing I was already
food, just water.
pregnant. I gave birth to a baby who was really not
It got worse and I was emotionally and
healthy and well.
physically drained. And then I made a major decision: to move out of his family
I tried to look for
homestead as they were not supporting us
help around me
in any way. More than anything, I told myself
and met a woman
that I still had a life to live and I was still to
offering help in the
see my children growing up. As for my own
community. I am even
family, it was another story; they didn’t even
now thankful for having
know I existed.
met her, for the support she offered me.
10
RDP houses are low cost government supplied houses
She referred me to HACT for an HIV test for
One day, the community development
me and the baby. Staff members at HACT
program at HACT offered me to do a
were amazing. When the results came, I
horticulture course and I jumped at it.
found that my child was negative. I could not believe it. I even asked for a confirmation
I now live in a government RDP house10
test. Currently my child is healthy, well and
that has a wonderful vegetable garden, I still
eight years old.
sell clothes and on top of that I am doing beadwork. The profit is amazing. I am able to
As for me, my results were positive. Although
share my skills, knowledge and support with
I was expecting it, it is always not easy to
other community members who need help,
face the truth. With the help from HACT I was
thanks to HACT support.
able to survive. HACT gave me clothes to sell and the profit was for me to keep and buy
I thank God for giving us people who are
another load from them at a very cheap rate.
highly intelligent, who are able to listen to
HACT also helped to pay for my children’s
each person and successfully solve
school fees.
their problems. Viva HACT, viva!!
29
Title
Building hopes and dreams: stories of positive change from Hillcrest AIDS Centre Trust
Facilitator and Writing Mentor
Gladys Ryan
Editor
Sarah Marlowe
Proofreader
Rebecca Summer Tse
Other contributors
The people of Hillcrest AIDS Centre Trust who so willingly shared their experiences
Published by
Oxfam Australia for Hillcrest AIDS Centre Trust, 2008
ISBN:
978-1-875870-68-4
Photographer
Matthew Willman
Designed by
Daniel and Raymond Loumeau
Printed on
Environment Wove made from 100% recycled paper
Permission is given for excerpts from this publication to be photocopied or reproduced provided that the source is properly acknowledged. The views of this publication are those of the respective authors and do not necessarily represent those of the Hillcrest AIDS Centre Trust of any funding agency.
Hillcrest AIDS Centre Trust 26 Old Main Road Hillcrest, 3610 South Africa Phone: +27 (0) 31 765 5866 info@hillaids.org.za www.hillaids.org.za 30
JOHANNESBURG
SOUTH AFRICA
KWAZULU NATAL
HILLCREST
AIDS CENTRE TRUST DURBAN
CAPE TOWN
The writing and development of this publication was supported by the Joint Oxfam HIV and AIDS program (JOHAP) - funded by