[This is a very long article, you may wish to disconnect your modem
before reading it]
August 2009. Comments have been made about this section on TMI. Everything written in 2002 was true. We hope before the end of this year, to visit this facility and update this entry. We understand that is has expanded to include some 50 children with autism-related problems and some 15 young children with vision-problems, and that it has better quality staff than in the past.
August 2009. Comments made about Hope School at the time this was written, were all true. We accept that certain aspects may have changed in the interim, and we hope to update this section by the end of 2009.
Broadcast on SAfm: 12:30 1 June 2000
Producer/Presenter: Patricia Glyn
Guest: Bronwen Jones
ANNOUNCER'S VOICE: Patricia Glyn in conversation with high flyers, deep
thinkers and other fascinating people.
PATRICIA:
Hello again. Welcome to Patricia's People. My guest today
describes her situation as 'The Helen Keller story, Elephant Man, Educating
Rita and My Fair Lady' all rolled into one. She also describes it as the
hardest story to live in the middle of, because people are horribly cruel and
others astonishingly kind. Cruel and kind, in this case, to 6-year-old Dorah
Mokoena, who fell into an open fire as a toddler and who was unspeakably marred
by the accident. She lost her lips, her eyelids, her nose, hands, the bone in
her forehead. She's had 24 operations to date, funded almost entirely by
donations from the British public. Those funds were raised by Bronwen Jones,
who I chatted to here on Patricia's People before, and who has my undying
admiration for what she's done for Dorah. And that includes offering her and
her birth mother a home, trips to England to see specialists, and so on and so
on.
But, being Bronwen - and she is indefatigable - she's now gone on to
offer help to those similarly afflicted, through an organisation she started
called Children of Fire. We're going to talk about their aims, and I'm going to
give out contact details at the end of the show, so you know what they say
about pencils and paper!
Bronwen, it's lovely to see you again, and I don't know how you got
through the interceding years, let alone what's to come still, but perhaps we
should start with a little update on Dorah and her medical condition.
BRONWEN:
Okay. Dorah is now a happy little 6-year-old who looks very strange. She
acts young for her years still, because she was in hospital so long without any
stimulation or toys. She's now going to school - the TMI crêche for
visually impaired children - and she's progressing well. Medically she has a
little false nose that we stick on in the mornings; she has lips that were made
from her back, so they're not quite like normal lips but they allow her to eat
solids and to make better sounds, and some speech. She has a flexible hand
where she used to have a stump - it doesn't have fingers yet but it can hold
things. And her eyes have been saved, even if they don't see very well.
PATRICIA:
What do you mean by that? Why don't they see very well?
BRONWEN:
Well, she has eyelids across the eyes, with just little peep-holes in
the middle. She does respond to light; she waves her hands in front of her eyes
if there's a bright light, or sun, around. She had a corneal graft last
September and she unfortunately caught an infection after that and it failed.
We'll try again when she's 8 years old.
PATRICIA:
And she wears a padded red cap. Why does she need that?
BRONWEN:
There's an area on her forehead which the doctors call a 'bony deficit'.
The bone was so damaged in the heat of the fire that it got re-absorbed, and
there's only skin there.
PATRICIA:
Okay, so that's merely for other people's comfort - her hat, and the
nose?
BRONWEN:
The hat is to protect her in case she falls, though people do find it
strange to see her without the hat. The nose is not just for other people's
comfort, though they do stare a lot if she doesn't have it on. But it's also so
that Dorah can feel her own face and think she's like the rest of us.
PATRICIA:
She's just getting to the age, I would think, where it's becoming
apparent to her and to you what she feels about her condition?
BRONWEN:
Yes, if we're holding her, playing with her, she feels our faces, she
feels her own. She feels my hands a lot and I think she cannot understand why
she doesn't have fingers. And, in fact, in September we may try and give her a
very short thumb, although that's not decided yet. And when I tuck her into bed
at night, she will put her arms around me and then she will feel my nose, and
she'll push and push. I'm sure she thinks I should take my nose off, too,
because it's night-time.
PATRICIA:
[WITH A GENTLE LITTLE LAUGH] She has her own little language, it would
seem. It's very understandable to you and to your 9-year-old son, Tristan, but
it's an absolute mystery, you know, to people like me. How developed is that
language?
BRONWEN:
She had more words when she was just in an English-language environment,
but she's had very many changes in the last couple of years. The one word that
she definitely retains that you'll all understand is 'eat', which she'll say if
she's very hungry. Her 'hello' sounds a bit like 'alla'. If you listen
carefully, there are words you'll understand as well. She says 'i-down' for
'sit down'. But you have to be prepared to listen. Other sounds she makes are
in response to questions. If I ask her, Are you hungry? she'll give a little
laugh which almost sounds like, I thought you'd never ask.
PATRICIA:
And how much can she do with her little stumps at the moment?
BRONWEN:
Well, we've put a prosthesis on her right hand, the one that's like a
little paddle, and with that she can hold a spoon, and a paintbrush, and a
toothbrush, but it doesn't work particularly well. I'd like to find an
occupational therapist who would make some better-shaped devices. She can also
pick up a banana or a bread roll, and she can hold quite a surprising number of
things if she needs to.
PATRICIA:
What chance of those little peep-holes through which she absorbs light
being extended into proper eyes at some stage?
BRONWEN:
I think when we re-attempt the corneal graft, then we can look at
putting muscles into the eyelids to make them open and shut. It's very, very
complicated to do that.
PATRICIA:
But her eyes, as far as you know, are perfect inside?
BRONWEN:
Well, I was there throughout the corneal graft operation, and I've had
the privilege of seeing beneath the kind of cloudy stuff that you can see now,
but there's a beautiful brown eye on the right side. I haven't seen the left
side. But people thought I was going to be scared of the operation; I just
nearly cried when I saw how beautiful it was underneath.
PATRICIA:
Now, what is the chance… I never know how to say these things. What
is the chance of making Dorah even mildly physically acceptable? Because she is
very ugly until you spend time with her, when the personality comes out. But
she's really very ugly to look at. [SAID VERY GENTLY]
BRONWEN:
[WITH A LITTLE SIGH] I don't think she'll ever be physically acceptable.
If we put some funny little mirrored sunglasses on her, people say, Doesn't she
look cute? And especially if we put on the European rather than the African
nose, as the European one's quite pointy. She has three noses in her box at
home. But I think the emphasis has to be the other way. I take Dorah out and
about a lot now. I used to shy away from full-face pictures in the paper; now
I'm encouraging people to use those pictures. There are many severely
disfigured children - and adults - and I'd like the public to see more of them
and then they'll cope.
PATRICIA:
Yes, and as we were saying before we went on air, it's so important that
children who are similarly disfigured - although there can't be many who are as
disfigured as Dorah - that they see each other.
BRONWEN:
Yes, it is very important. But I'll give you an example. There's one
little girl I know in Cape Town who got badly burnt; she hasn't lost her nose
but it's almost flat after the burning, and the officials - for whatever reason
- have decided to send her to the school for the blind because they think other
people shouldn't have to look at her.
PATRICIA:
Tsk, tsk!! Well, we're going to get into broader issues just now, and
the Children of Fire. But, just to learn more about Dorah, what is her fate, do
you think? Will she have to go into special schools, and will she be able to
work one day?
BRONWEN:
Well [WITH A SIGH]… The school she goes to at the moment, she's
learning there to socialise with other children of a similar age. But I'm
extremely worried about her future. At the moment she's legally fostered to my
care - her mother seems to be out of the picture again - and if I make the
commitment to be in South Africa forever, and to be a surrogate mother to her
forever, I suppose her future is reasonably good that way. And especially if my
son chooses to take over. But, after Dorah reaches the age of 8 years old,
there is no school in South Africa that is at all appropriate to her needs. And
that's very shocking and very worrying. It's not the same in so-called First
World countries. They will even get special teachers sent to people's homes if
there's not a suitable school. So maybe that's my next battle with Dorah, is
not so much the physical operations but getting some appropriate education. And
I hope to bring a multi-disability specialist out from the UK, if I can find
funding - the charity can't cover that. I hope to bring him out later this year
to start training people, for her future and for the future of the other kids
who don't have any education option in the future.
PATRICIA:
And how do you feel about the day, which might surely come, when you've
got to deal with the psychological damage that's been done to her by her own
looks?
BRONWEN:
Well, she will never know quite how bad she looks unless the corneal
graft works, and even then I wonder if it would give her that clarity of
vision. I've dealt with other people who've got huge psychological problems.
There are no easy answers. But Dorah has always been loved. Even in bad
hospitals, where she didn't get stimulation, she was loved. And she is a happy
child. I think she'll cope.
PATRICIA:
So you're not at all ambivalent about your, you know, decision to help
Dorah?
BRONWEN:
Dorah's part of our life, and she must be helped. We're not going to
walk away just because it's hard.
PATRICIA:
Well, that is what's so remarkable about you [WITH A LITTLE LAUGH]
because most of us would have said, No, this is just too much. But, as I
mentioned at the beginning of the programme, it's now not only Dorah you're
helping. I gather the next person to come into your care was someone named
Evelyne. Tell Evelyne's story.
BRONWEN:
I went to Gabon to earn some money and, maybe foolishly, I asked about
burn victims, to which they told me their hospitals had been on strike for four
months, in which time no poor person got any medical treatment at all, but that
there was a young woman sitting in hospital who'd been burnt before the strike.
And the charity I set up is not empowered to help someone from outside of South
Africa, and certainly not a young adult.
But I met Evelyn - sitting there, painfully thin, terribly dejected. And
with horrible infections. And her arms were rigid, and her neck was thick. And
the doctor said, I'm going to cut her left eye out next week because we can't
do plastic surgery in Gabon. And I said, Just hold your scalpel. I don't know
what I can do, but please don't do anything for two weeks. I came back to South
Africa; I got one hospital group to agree to sponsor an initial operation, flew
her here, and she stayed in our home for 14 months.
She had 3 major operations, she went back able to stretch her arms in
the air, to play tennis, to swim, and was able to move her head. She will never
look lovely again but she went back physically and mentally able to cope. Maybe
I shouldn't have taken her on. It was also a tremendous emotional drain -
especially times when she felt suicidal. That was also very hard for my own son
but we've learnt a lot along the way and…
PATRICIA:
Why was she burnt? What happened?
BRONWEN:
She was attacked with acid. Her cousin was fooling around with a married
man. His other girlfriend sent someone to attack the cousin and they got Evelyn
by mistake.
PATRICIA: Is that common, do you think?
BRONWEN: It's fortunately not common in Africa; it's very common in
Bangladesh. And in Bangladesh there are lots of revenge attacks - from women
who won't marry men, women who don't have children, and so on. It's not common.
Though in this country many people might know of Thandi Klaasen. She was
attacked with acid by a jealous…
PATRICIA:
Yes. The pain must be unspeakable.
BRONWEN:
Unspeakable. And people just don't act sensibly. Evelyn knew, I think,
in her heart of hearts, that she should have run and got water on straight away
- but she didn't; she ran around screaming and in a panic, and pulling off what
clothes she was wearing. And people didn't help her very quickly. And that's
why the damage was so bad.
PATRICIA:
Have you come across similar attacks here, though, in South Africa, acid
attacks?
BRONWEN:
They're rare but there are a few.
PATRICIA:
All right. So, most of the burns here are still from fire, burns from
shacks?
BRONWEN:
Shack fires are the most common. Children playing with wire near
electricity - the young township boys taking wire out of tyres and maybe
throwing it up and it hits the pylon, and then they get their hands burned,
typically. And other burns, particularly down towards the Cape, from petrol
bombs. Often children get caught in the middle of that violence.
PATRICIA:
Let me tell everybody that Bronwen Jones is my guest today. She got
involved, willy-nilly, in burn victims' lives. She has now started an
organisation called Children of Fire, through which she's trying to help
prevent these fires as well as aid the victims of them. So let's talk a bit
about that. I mean, in these higgledy-piggledy townships, what hope do you have
of preventing fires?
BRONWEN:
You have to educate the people on the ground as to why it's important.
So initially I went to the government's Disaster Management Committee and I
asked for funds, and they said they had no money. And I said, Well, I'll show
you that it's cost-effective and then we'll talk about money again. And then I
looked for a squatter camp - or, to be politically correct, an 'informal
settlement' - nearby, and I found one. It has three names - Joe Slovo, Slovo
Park or Kofifi. And it suits the purpose: because it's close by I can talk to
the people regularly and check up on progress. And also it's a controlled site:
it can't grow, so it has a fixed population of about one and a half thousand
people. And I've been working there for about a year. It takes a long while to
get to know the community and how they tick.
It's desperately over-crowded, everything built far too close together,
and there have been many serious burnings there already, from shacks burning
down to drunken husbands pushing wives over burning braziers, the hot water,
and so on. And I got to know the community and we then worked with St John's
Ambulance and selected a group of people to do First Aid training. And we
trained them to Level One. We trained them, actually, at the squatter camp,
which had its own complications. I ended up having sixteen 2- and 3-year-olds
in my own front room one day because there was nowhere else for them to go, as
we used their creche building. But we educated them on site.
And the proof of the pudding, if you like, is what the people who were
trained, what they've done afterwards. One of them, within two weeks of getting
his training, helped a man with a panga wound to the head. He helped another
man who was stabbed in the chest, and he helped a child who drank paraffin.
Now, his training cost about R500. I think that's money well spent.
We went on with the people who were trained in First Aid, to train them
in fire-fighting. We worked with the people in Brixton, of Greater Johannesburg
Emergency Services, and we devised a special course of fire prevention
and fire-fighting which I did with them. I found it quite interesting, going
through man-holes under the ground, [LAUGH FROM PATRICIA] going through the
dirt in small, small holes, and getting a little bit claustrophobic. And going
round a smoke-house… You have to search for people in the smoke and the
dark, and it's very disorientating. And I have immense respect for
fire-fighters now because their job is quite awful.
But, even after the second day of training, another of the squatter camp
residents, Dan, one of his neighbours set his shack on fire. It was an
intentional fire - from an angry relative, I think - and Dan put that fire out,
and he'd only done 2 days of his 3-day training. So we know it's working.
PATRICIA:
But what about the practicalities? There can't be much water in these
townships. They share two taps between 100 000 people or something!
BRONWEN:
That's right. When we did the bucket run, we were running with buckets
to put out a shack fire - we built our own shack to practise - it became quite
clear there wasn't enough water, and if you have two taps, you cannot get to
those taps in time, and to the furthest shack. So we're now looking at, if you
like, intermediate technology: we want to put large drums at strategic points
around the squatter camp, that people can use to put out a fire close by.
When you think about putting these drums in, you have to think about
every eventuality. You have to make sure someone won't steal the drum,
you have to make sure children won't fall in and drown, and you have to make
sure that lazy people won't use it as their water supply for cooking. So we
want to put a nasty-tasting but non-toxic chemical into the water.
PATRICIA:
Have you found it?
BRONWEN:
I've got to check it out exactly but people say the stuff you paint on
fingernails to stop people from chewing them would be a good substance.
PATRICIA: Oh. All right. So you're still checking out availability and cost,
and all of that?
BRONWEN:
That's right.
PATRICIA:
Among the fairly difficult to see photographs in front of us, there's
one of a man who's clearly been burnt in a shack, trying very hard to get out,
and you point out that you've got to have a second exit in your home.
BRONWEN:
Yes. Most people don't. I mean, I'm sure you can tell from my accent
that I'm from Britain and, when I arrived in this country and saw burglar bars,
I just… My first thought was, How do I get out if there's a fire? And so I
then got some smoke-alarms, so I have something to warn me. But most people
don't seem to do that. And I say this is not just people in shacks; people in
brick-built houses have dodgy electrical appliances and they don't seem to
think it's their responsibility to make their lives safe.
So the number one thing you should do, wherever you live, is ensure that
you have two exits. There are burglar bars that can be opened. If you can't
afford to have those, then at least get a smoke-alarm. If you're in a shack,
and you cannot afford to make two doorways, then at least be careful as to
where you sleep, that you never leave a heater on at night, that you leave a
key in the padlock, or you have a bolt so that you can fumble through the dark
and get out - because those seconds count!
PATRICIA:
Let's talk a little bit about more affluent people. I said at the
beginning, and I was quoting you, that people are very kind or very cruel. It
doesn't seem to have any half-measures, people's response to things like this.
I was surprised and disappointed, when you came on the programme last time,
that only one listener came forward to help you in any way, even if it was just
a call to say, you know, Well done; keep going. How do you get the money?
Because you're not affluent, are you?
BRONWEN:
No. [BOTH LAUGHING] I'm not. The only significant sponsorship we've had
in South Africa has been, thank goodness, African Merchant Bank - that came
early on. Their chief executive read one of the first articles I wrote about
Dorah and has stayed interested and involved. I believe that their sponsorship
will carry on but we could certainly do with more because it's a massive task.
There have been a few individual donations - which are much, much
appreciated - but I don't know, any better than you, what it takes to make
people come forward. They can come forward also with things other than money.
We can use volunteers in a whole heap of different ways.
PATRICIA:
Those day trainers, or anything. But how have you managed to persuade
doctors to perform these operations on Dorah, for instance?
BRONWEN:
Well, the doctors in Britain, they agreed anyway. Where I started to get
operations in South Africa, with Evelyn for example, I did tend to just look
them straight in the eyes and say, You're not going to charge for this
operation, are you? and see if they'd say no.
PATRICIA:
And invariably they said no?
BRONWEN:
[WITH A LAUGH] Some charged - not very much - and some were free.
PATRICIA:
Okay. I was thinking about … Maybe we should charge people a tithe
- 10% on all plastic surgery they have done on themselves - because there are a
lot of women and men in the Northern Suburbs who spend an awful lot of
money on their own faces.
BRONWEN:
I think that would be a wonderful idea. I've sat in plastic surgeons'
waiting rooms - with Evelyn, for example - and thought, What is going on in
their heads? How can they look at this person who is terribly disfigured
and clearly not well off, even just by her clothes… How can they think
about having a 'nip' or a 'tuck', or getting rid of their double chin? I
mean, hey, two or three chins are quite cute!
PATRICIA:
[LAUGHING] Yes, maybe there should be photographs of these children in
every plastic surgeon's waiting room! But you mentioned earlier, and I do want
to talk a bit about it - the effect of all of this on your son, Tristan. You've
opened your home to these people. How do you think it has affected him?
BRONWEN:
I think generally it really has helped him. He's a very mature
9-year-old, he's a very kind 9-year-old. He's still got the naughty and
mischievous bits that kids should have! But I was nervous along the way - I was
nervous even when I first introduced him to Dorah. But he's very protective,
he's very aware, and he's more down-to-earth than me! He will remind me, if I
comment on someone's appearance. He'll say, Appearance doesn't matter.
When he would walk to the post office with Evelyn and people would be cruel and
stare, he'd come back and say, It's not racism, it's face-ism.
PATRICIA:
Oh, bless his heart! He's very affectionate towards Dorah. He must have
a pretty good idea, now, of how to treat burns and burn victims, doesn't he?
BRONWEN:
Yes, he's helped me with the dressings; he knows about the different
chemicals you can put on, and that you must have sterile hands before you do
anything. I would love to know… Well, maybe you can interview him in 20 or
30 years' time, and see how his career turns out! But I think it's inevitable
he does something caring with his time.
PATRICIA:
And the cost to your life, Bronwen?
BRONWEN:
There's never a day off. It would be nice if there was. I have vague
ambitions to one day have a holiday but now that Dorah's with us it'll be a
complicated holiday wherever it is, because even if we get to sit on a beach on
a tropical island, then we have to deal with people staring. And some days
we're tough and we can laugh about it, and some days we cry.
PATRICIA:
Which wins? The days you laugh or the days you cry?
BRONWEN:
The days we laugh because she's a nice kid, and Tristan's a super kid,
and stuff the people who are mean!
PATRICIA:
[LAUGHING] Is she very time-consuming, Dorah?
BRONWEN:
Yes. It's the ferrying around, it's helping her to eat - because she was
using a spoon reasonably independently with a prosthesis but she isn't now. She
had a month with her mother where she didn't get the stimulation she needed.
We're having to rebuild that and we're having to devise items that just make
day-to-day chores a bit quicker. For the first time in eight and a half years,
I'm even contemplating getting some home help. It's the tedious chores that are
a waste of, or an irritating way to spend, time. I think it's about four hours
a day that Dorah takes now and I'd rather spend four hours playing than four
hours washing dishes or whatever. But we'll find…
PATRICIA:
She doesn't seem to be very mobile. Was her lower half also affected in
the fire?
BRONWEN:
No, her legs are fine. There were initial doctors' reports saying that
she would never walk. Tristan and Thobe spent a long, long time - sorry, Thobe
is Tristan's very best friend - where they would put Dorah's arms over their
shoulders and they would shuffle along on their knees and try and get her to
take her weight on her feet. She was walking fine last August; again, when she
had this month without stimulation, things went back a bit. But what she does
now is… she's a bit scared of falling, but on a sunny day in the garden,
she'll get on her knees and she will shuffle an immense distance all around the
place, exploring. And once we can get the knees changed to feet for exploring,
she'll take off.
PATRICIA:
What is your theory on why disabled people should be out there in the
community? Because my theory is, you know, that they are eternal reminders of
one's own humanity - they bring out either the best or the worst in us, people
like Dorah, don't they?
BRONWEN:
Yes.
PATRICIA:
What's the worst that she's brought out in people?
BRONWEN:
I've had some close friends and family - well, I thought they were close
- who have invited me to stay, and said, Please leave Dorah and Evelyn
behind. Which I find very hard to deal with. Well, my son in particular,
some of his friends were not allowed to come and play once Dorah came to live
with us. I don't know what their parents think; I don't know if they think that
ugliness is catching. But their ugliness in their souls is not going to catch
us!
PATRICIA:
And when you're out and about, the kindness of strangers? I mentioned
that that had surprised you.
BRONWEN:
Some people are just sweet. They'll come up and talk, and ask
what Dorah's name is. Some people will even give her a hug. I found a lot of
response once there was a full-face picture of Dorah in the newspapers
recently, and with her very noticeable little red hat. People now know who she
is, and they want to come and say, Thanks. They may not want to take
someone disabled into their own homes, but they appreciate that we're helping
her.
PATRICIA:
Yes. We had an interesting response from a chap who was in the cafe
where we had a coffee, to say that you are really a reminder of what we all
should be doing, and what we're trying to build in this country. And, once
again, I salute you for that, and I really hope that SAfm listeners come
forward for you because maybe just the odd call to say, Well done, and keep
going is as much use to you as money!
BRONWEN:
It would be lovely. And maybe just a few of them could go and visit some
of these kids in hospital too.
PATRICIA:
Oh, they're languishing there with no visitors, are they?
BRONWEN:
Heaps of them, yes. The ones I'm actually even more worried about are
the ones that are hidden at the back of rondavels in the middle of nowhere,
because their families don't want people to see that they're ugly and injured.
And I hope, eventually… I would like to get a team of youngsters,
especially maybe people in their year between school and university, who would
help me do the research and find out the real quantity of the problem.
PATRICIA:
Okay, well, the very best of luck to you, Bronwen. Thanks for chatting
to us again today, and more strength to every part of you, not just your
elbow.
BRONWEN:
Thank you.
BRONWEN:
Thank you.
PATRICIA:
Bronwen Jones - She's now running an organisation called Children of
Fire and their e-mail address is: firechildren@icon.co.za. And
Bronwen's telephone number is Johannesburg 726-6529. I hope you'll be able to
do something to help these folk - even, as I said, if it's just a phone call to
Bronwen. And maybe if you're considering plastic surgery - and that's entirely
your right - just consider giving a little donation to the people who
really, really need that reconstruction.
