Masoyi Home Based Care
and
Hands @ Work
South Africa
Registered Charities in
South Africa
This document provides a basic outline of the
problem, the project and how we can help.
Because the story of HIV/AIDS is so often lost
in the statistics I have included brief stories of some of the people I have
met to assist the reader in understanding the reality of the situation in
individual lives.
Some of these stories may be painful to read.
Please feel free to use all or part of this
document in support of Masoyi.
More detailed information, videos and
photographs are available from:
MASOYI'S UK Contact
Penny Thompson
0121 585 6827
Please let me know of any plans for support that you might have.
Cheques should be made payable to
Hand @ Work
A UK postal address or bank details for direct payment are available on
request.
Introduction
The number of people known to be living with HIV/AIDS
today is in the region of 42million.
Whilst there is only one strain of the HIV virus the ways in which it
affects lives varies dependent upon geography and economic circumstances. In
developed countries, people living with HIV can live long and productive lives
with the help of anti-retroviral drugs, good diet and support. In developing countries, in some urban areas
drugs, food and treatment are also available. But in many rural communities
across sub-Saharan Africa, Asia and elsewhere, whilst the supply of drugs is
constantly talked of and promised, they remain
largely unavailable. The complicated nature of the drugs together with
their requirement to be taken regularly with meals make it difficult to see
how, even if made available, they could be effectively distributed and used in
the vast and largely unstructured rural areas.
As a result many thousands are today living and dying with HIV/AIDS in
quite appalling conditions.
Masoyi
Home Based Care, South Africa
In the South African region of Mpumalanga, just south
of the border with Mozambique, the story and the statistics are at their
worst. The Masoyi area within this
province is home to 250,000 black Africans most of whom live in devastating
poverty. Unemployment stands at 75%, the rate of HIV infection at around 33%
and the average life span in this area is 33 years.
Masoyi's main township Phola covers a strip of land
just 6km x 9km. It has one tar road and a warren of dusty, pitted tracks
feeding the thousands of poverty stricken homes of its150,000 people. There are
sometimes as many as 40 funerals each week most of which are AIDS related
deaths. There are several other
townships in this area, each telling the same story and their only support
comes from the Masoyi Home Based care programme which together with its sister
charity, Hands @ Work operate from the
Africa School of Missions based just a few kilometres away from the Masoyi
communities.
Care
Masoyi Home Based Care, led George and Carolyn Snyman
has in recent years trained some 200 volunteers from the community to care for
those who are sick and dying, as well as to identify vulnerable elderly people,
children and orphans who need support.
Literally teaching the community to care for each other.
Initially the project formalised and offered training
to local women already caring for the sick, but not really understanding what
the sickness was. Each community volunteer receives training in basic nursing
skills, hygiene and nutrition and once trained will undertake 20 -30 patient visits per week, all on foot, often
carrying heavy food parcels. Now each
area in the Masoyi community has a team of volunteers undertaking daily patent
visits, and a weekly visit from the centre team which includes nurses, a social
worker and an orphan co-ordinator.
In this devastatingly poor community there has been no
real education or awareness as to the risk of HIV until recently. For many aids
is inevitable, especially the women.
As one volunteer told me, 'If I refuse to sleep with my husband he will
leave. I will have no money to feed my children. If I agree to sleep with him I sign my own death certificate, but
I cannot let my children starve'. This women now has AIDS. With no welfare benefits and the high
instance of women on their own contracting aids through rape, these words are
true for thousands of women in the same situation. Their own proximity to the disease makes these volunteers
excellent carers. Many of the older
women have already nursed their own children through to their deaths,
collecting orphan grandchildren along the way. The younger women having no
'bedroom power' and dependent upon their men, care for their neighbours and
friends knowing that one day they are likely to need care themselves.
The centre team support the volunteers work by
bringing supplies of vitamins, pain relief, food parcels, blankets and medical
skill, or a referral to the associated ACTS medical clinic. ACTS is situated
opposite the Africa School of Missions, and was established solely to respond
to the communities dire lack of acute medical support. Whilst there is a large government hospital
nearby and each township area has a government established clinic, the lack of
available medicines and the continuing stigma surrounding AIDS means patients
referred for acute care frequently return untreated. ACTS has qualified nurses who undertake home visits when
required, as well as an excellent doctor. It recently opened a small 6 bed
hospice, due to expand when funds permit, which offers palliative care and
respite for the carers.
Orphans
A pressing priority are the thousands of children
orphaned by this disease, and the Masoyi team are active in seeking a variety
of solutions to prevent children being left alone and un-cared for.
Where possible the team identifies those children most
at risk before they become orphans, and with the help of their mother will try
to identify a female relative or a community 'granny' from the many hundreds of
older vulnerable women living alone who will move into the home before the
mothers death. Thus she is there to help with the children and remain after
mothers death to continue their care. This arrangement has proved highly
successful, the family remain in their own home, often the only possession they
have, and valuable continuity of care is achieved. With the added advantage that the vulnerable 'grannies' also
achieve security and purpose for their lives.
Where this preferred scenario is not achievable small
orphan homes with house parents recruited from the local church are being
built. A fully equipped home costing as little as £2000 will become home in the
centre of their own community to five or six orphans.
There are more than 900 orphans registered with the
Masoyi project and so it is inevitable that some orphans, where the oldest
child is around 13yrs or more, will remain living alone after their parents
death. They are carefully watched over by the volunteers and the social work
team as well as neighbours and other relatives.
All orphans receive regular food parcels as well as
access to the projects vegetable gardens,
where they are taught by 'garden grannies' to grow for themselves and receive the produce to eat or to sell
in return. In one township a crèche has
been established to take pre -school children, thus allowing older siblings to
return to school. School uniforms and other clothing are also provided by the
project.
Hands
@ Work
Hands @ Work has recently been established to meet the
needs of older orphan boys and vulnerable young adults. Teaching them practical
and life skills with a view to them escaping the pervading cycle of crime,
sickness and death and enable them to provide for their younger siblings. The
young men, who must all have completed school are taught building, plumbing and
carpentry skills which are put to use immediately in the construction of orphan
homes, granny houses and toilets around the community. The teams foreman is Simon, one of its first
recruits who along with his team has become a role model to other young men in
his community. The team is a place of
good natured fun, friendship and hope for a better future. Two young men have
already moved on to regular building
jobs and another has chosen to study engineering at college.
Growth
The success of both projects has brought requests from
Zambia, Mozambique and The Democratic Republic of Congo, to help their
communities to respond to their own crisis.
The teams recently travelled to Zambia where they built a community
house in Kabwe, (in 8 days), from which a home based care project can operate
and train its volunteers. They are also helping the local churches there to
establish rural schools to respond to the acute lack of education facilities in
this very poor and remote area.
Our
response
It is impossible to ignore the appalling conditions in
which this community live, but the depressing picture is truly overshadowed by
the incredible demonstration of servant hood shown by these carers. Volunteers,
nurses, doctor, all just ordinary
people who sometimes run terrible risks themselves as they care for very sick
people in what can often be an extremely volatile community. Many obstacles to a stable future remain.
The sporadic availability of drugs, the
global anti retroviral debate, the lack of education or any official
strategy to combat aids and an acute shortage of funds are all pressing. But none of this should be an obstacle to
our responding with support for them today.
We may feel that this is all too far away to affect
us. But two facts are clear; first HIV/AIDS is rising faster here in the UK
than at any other time, with some 2000 new cases every year that we know of.
Little is being done to educate us to this fact or to stem its spread. Secondly, in sub-Saharan Africa and
elsewhere in the world millions of children are growing up without fear of
death or respect for life. We may never have to deal with them or the
consequences of their situation, but one day our own children will.
The
need
Vehicles
Both projects operate with old and problematic
vehicles. Two must be replaced.
A Venture to carry the centre team into the community,
to visit more isolated patients, and to deliver food will cost app £7,500 (second hand and in good
condition).
A double cab bucky for the building team and its
materials a little less.
These may not seem like the most urgent needs but they
are. Without them patients will not seen, orphans not cared for and food not
delivered. In short the work will stop.
Orphan
care
Orphan homes cost as little as £2000, more are required.
A rural school in Zambia can be established and
operated for as little as £100 for
four months - just £300 per year.
It is also vital to achieve general donations which
will be used for food, medication, clothing and other needs as they arise.
Please note, there are few overheads to the project.
The project has rent free accommodation within Africa School of Missions. To
ensure continuity and experience some staff receive nominal salaries and the
volunteers a small incentive to cover
expenses.
Some of the People I have met
The Children
Nini
George Snyman came across an old lady caring for her 8
orphaned grandchildren in the Masoyi community, one of whom a tiny baby called Nini estimated to be
about 4 months old simply screamed and screamed all day. With Granny close to
breaking point and threatening to kill herself George took the baby home to get
her checked over by a doctor and give Granny a break.
Nini's mother had died of Aids related illnesses soon
after her birth. Nini was found to have scabies, an ear infection so bad that
her ear had begun to rot away, oral thrush, a bladder infection and severe
malnutrition, and to their great surprise was found to be a full one year
old. Nini screamed solidly for her
first two days at the Snyman house, she was sick, scared and hungry. It became
clear that a weekend stay was insufficient, so official arrangements were made
for Nini to stay long enough to treat the worst of the illnesses. Well on the way to recovery the Snymans took
her back to visit her family in preparation for a reintroduction into her own
environment. But when they arrived at
her family home Nini became inconsolably hysterical. The dilemma of what to do
was solved by Granny refusing to take the screaming baby back.
Nini is now clearly a happy and fully integrated member
of the Snyman family and due to the incredible ministrations of the whole
Snyman family, shows little sign of the terrible problems with which she
arrived or whatever traumas she had experienced before her arrival. She eats
well, sings a lot and demonstrates a liveliness not usually observed in small
children of the Masoyi community.
Whilst the Snymans believed it to be important that
Nini returned to grow up in her own culture the process of adoption back into
the community proved impossibly long, during which time Nini's attachments grew
strong. Too strong to contemplate
another traumatic change. Nini is now officially a Snyman having been adopted
into the family, quite obviously, without them Nini would not be alive today.
Xanele Sambo
Considerably less is known about Xanele, who is six
and lives in Mbonisweni, a remote community on the side of a mountain. I met
her one day at her school, a tiny, frightened, filthy child dressed in dirty
rags. She, was not an orphan (yet) and lives with her alcoholic mother. Xanele
we were told, was being raped regularly by a man living close by her home. It
being widely (and wrongly) believed that sex with a child will cure AIDS,
Xanele's story is not unusual. Indeed the neighbour was not her first rapist,
her stepfather had been imprisoned for the same offence. Xanele's second rapist
was eventually arrested and an assessment for Xanele's care was being
undertaken as I left South Africa. I await further news of her.
Florence's Children
Florence, HIV positive mother of four children,
abandoned by her husband and ostracised from her family, died from Aids related
illnesses in a barren and squalid shack she had borrowed from a friend.
The story of Florence's last few months of life is
that of a sick woman desperate for help, for herself and her children as they
moved on from one inadequate house to another.
With no money she was unable to pay rent, the houses in question being
barely worth any rent. On one occasion she was moved on because her eldest
child was caught stealing a small amount of spinach from a neighbours garden.
He admitted he stole the spinach, he
said it was to feed his brothers and sisters because there was no food and they
were hungry. Florence's final journey
to the borrowed shack, proved just too much for her weakened emaciated body she
was eventually carried there on the back of her twelve year old daughter.
When Florence died she was being cared for by
Donnalee, a young Afrikaans volunteer from the
Masoyi project. In the last moments of life, Florence begged
Donnalee to take care of her children after she had died. Florence died penniless, and with no family
willing to claim the body and organise a funeral, it was left to the Masoyi team to 'buy back' the body from the
mortuary and to organise the funeral. With the price of coffins soaring from 500 to 4000 rand in the last
year, one of its volunteers cut up the office cupboard to make a coffin for
Florence.
George
told me, "Its the children I worry most about, not just Florence's children,
all the children, all this emotion, all this trauma, they go through so much
and they have no way of dealing with it, it’s a time-bomb waiting to go off.
The Social Worker
Thuli qualified as a social worker at the University
of Cape Town with high expectations of a glamorous life with an office,
computer and secretary of her own, but
she told me "This was not in Gods plan."
Thuli is a popular and valued member of the Masoyi
team, she is no pushover and when circumstances dictate, demonstrates a determination
which rarely fails to get a result. A
real 'community person', Thuli hates office work and is never happier than
walking through the Masoyi community visiting clients in their homes, helping
them to make sense of their lives.
Many of Thuli's clients are dying from AIDS related
illnesses and she must respond to whatever is the pressing problem of the day.
Gently she must ask the questions which
mothers don’t want to hear, or have to answer: "Is there a female relative who could care for your children when you are no
longer able? Or is there a granny in the community that you trust and who we
could ask to care for them?" Her
tenderness is painful to witness, her
concern at all times being that all her clients should die reassured. She told
me, "I cannot stop them from dying, they are very sick, but care and
reassurance lessens the pain".
Thuli's duties as a social worker are many and varied,
sometimes acting as mediator between separated families to secure care for
orphaned children, at other times explaining AIDS, its related illnesses and
the reality of what it will bring.
Sometimes she is the provider of direct care, at others she is the
trainer for volunteers and family carers, helping and supporting them in
providing intensive care to dying family members in sometimes appalling
conditions.
She is also called upon to support victims of abuse on
an almost daily basis, many of them children.
Of these children Thuli says, "They are literally robbed of their
future, not only have they been raped, if the rapist was infected that child
may soon die."
Three years into her role, Thuli radiates love for her
work and for the people she serves.
Her sympathy and love for those in need is painfully evident to the
observer. Whilst most of her visits
are planned, there is always time to stop when called by a concerned neighbour
to hear how two orphaned brothers have fought and the younger has run away.
Notes taken she will spread the word to her volunteers who will make enquiries
as to his whereabouts as they move around the community. With no family and
with the police unlikely to be interested in yet another runaway boy, these
volunteers are likely to be the only ones concerned for the whereabouts of this
missing child.
Thuli and her colleagues work in constant liaison with
government social services without their co-operation many official matters
could not be resolved and much of the work undertaken by the Masoyi team could
not continue.
It's an exhausting caseload but she told me "It is a real privilege to work with
people who are dying. To enable a woman to be
involved in establishing care for her children after her death, and to
make sure that as far as is possible, in the conditions we have here, that
people are able to die a decent death".
A
personal note from the Writer
Walking in the Masoyi community with a couple of local
volunteers, and a medic from Mozambique, I realised that as I listened to the
unfamiliar cacophony of rural Africa there existed, pressed up close to edges of that noise, a devastating
silence.
Compelled to listen not to the noise but to the
silence, I found within it bewilderment, confusion, pain and fear of the people
I saw around me and of the many thousands I could not see. I had no understanding at that time, but I
did know I had a choice, I could turn my attention elsewhere or continue my
listening. I continued and still continue to listen.
On a later trip I found the courage to ask God just
what this silence meant to Him. Even as
the question was forming, I felt a pain in my heart that left me in no doubt
that it had been wrenched in two, without warning my face became a sheet of hot
coursing tears and my knees buckled as if I could stand no more. Crouched in
the dust I knew God's love for these children before me, standing patiently
waiting for their weekly food distribution. Completely alone in the world but
for this group of volunteers, some of them total strangers, bringing food,
clothing, medicine and hope that things will one day be better.
The Masoyi Home Based Care Project is a charity
operating on limited funds, find out more at www.masoyi.org
or e-mail Masoyi@global.co.za.