Janine Barends is eleven years old. She
was burnt as a baby, allegedly by falling into an open fire on the Western Cape
farm where her mother still lives. It is also understood that Janine had mild
foetal alcohol syndrome. Janine Barends is eleven years old. She
was burnt as a baby, allegedly by falling into an open fire on the Western Cape
farm where her mother still lives. It is also understood that Janine had mild
foetal alcohol syndrome.
Janine has had no schooling at all in 2002 because of her operations schedule.
In late August 2002, Janine was "abducted" from the farm by her own mother, who decided in a drunken stupour that she did not want to be parted from her child.
Mrs Marx, the farmer's wife, said that the mother finally agreed to bring Janine back and let her go to hospital for further treatement. Janine should be back at the Red Cross hospital in Cape Town by mid to late September 2002.
Janine's social worker Memory Roux has repeatedly tried to organise workshops or therapeutic sessions with the mother who simply doesn't pitch up.
Fortunately Janine has a network of other farm workers, her two older sisters and Mrs Marx herself, who looks after Janine when her parents become too drunk.
The problem of alcoholism on Cape farms stems from a practice of paying vineyard workers in particular with liquor. The practice is being phased out but has led to enormous and persistent social problems.
In October 2001 Janine was attending the Pioneer School for the Blind in Worcester, near Cape Town, where she has been for some years. It is alleged that Janine was placed there because of her unsightly appearance.
Children of Fire first came across Janine when she was in Cape Town undergoing surgery, in early 2000. On a follow-up visit to her at school, in Worcester in August 2000, we gave Janine a copy of the Mail & Guardian newspaper to look at, and she demonstrated that she could see well enough to read the newspaper aloud. It took a year to arrange for someone to take her for an eye test. At the time Janine was briefly in the Sarah Fox "convalescent home", near the Red Cross Hospital in Cape Town. As matron DP was away, we did not have to go into the long justification that might otherwise have been necessary to take her out for the afternoon.
We bought Janine a new "beanie" (hat) and a little toy - a wooden box with a bug inside it on a stick, so when you open the box the bug shakes. She really liked it. And she liked the ice-cream and the coke and the trip in a fancy 4x4.
The eye test showed that Janine needed an eye operation for a squint but that there is no problem with her sight that would remotely justify placing her in a school for blind children. It seems more to have been a case of social workers thinking to hide away disfigurement, rather than helping with counselling for Janine herself, her family and other pupils and teachers at a normal school. Counselling is very hard to obtain for anyone on a low income or living in a remote rural area, in South Africa.
Professor Don Hudson of the Red Cross hospital has been a great support in our endeavours to help Janine. Once we had arranged the eye test, he said he would personally take her through to the head of ophthalmology (Dr Grotte) at end-September 2001 to arrange an operation to rectify the squint. He is also using tissue expanders on Janine to help improve the shape of her barely-existent nose.
We wrote to the Pioneer School to seek assistance with moving Janine to the St Joseph's children's home in Cape Town, so that she can mix with other sighted children but will not be stared at because many of the children there are injured in different ways. We asked Rene Albertyn, who organises rehabilitation at the Red Cross Hospital, to assist with moving Janine.
Janine said at the time that she wanted to be close to her Mummy but now she only sees her in holiday times in any case, and could still travel home from St Joseph's by bus (the charity would arrange or fund this).
Janine is also anxious about being a figure of fun in "normal" society. It is not clear how many of these ideas are her own and how many have been suggested to her by people at Pioneer School. Children of Fire hopes that if Janine is placed in St Joseph's, she will stop missing six weeks or more of education each time she has an operation. Children in the Sarah Fox "home" don't go to school; children in St Joseph's, do.
St Josephs also has a psychologist, occupational therapist, physiotherapist, easy access to the rehabilitation clinic at the Red Cross Hospital and more.
Once most of Janine's surgery is complete, we would endeavour to find a good school near to her relatives and help with counselling so that she could fit in more easily. We have found that with Dorah (see elsewhere on this website) her admission to a normal school in October 2001 was eased by all the other pupils and teachers being prepared with photos and information more than a month in advance of her arrival.
Anna, our Cape Town representative introduced Janine to Azola, a girl of the same age and also almost bald from burns. Azola lives at St Joseph's home. Anna says that the rehabilitation sessions at Red Cross that St Joseph's residents can attend, help rebuild children's self-esteem. Some burned girls have a gender identity issue, especially when they have no hair, as many people think that they are boys.
Anna decided that both girls might feel better if they wore wigs. In order to take Janine for a wig-fitting session that we felt, on previous experience, might have been hindered by senior staff at Sarah Fox, we were assisted in getting Janine admitted to the Red Cross hospital for the weekend.
Then on a Saturday in September 2001, Janine and Azola met en route to Fish Hoek and the day of silky locks. Diana Erasmus, a home hairdresseer, donated a wig to each girl in her personal capacity, but will contact a wig company to see if they might assist with further donations. While it seems relatively common to consider wigs necessary for children undergoing chemotherapy, it seems almost unheard of to think about the need for hair for burned bald children in South Africa.
We approached a British hairdressing organisation to try to obtain more wigs, but had no response.
Anna wrote: "The wigs expedition was a GREAT success. The girls were speechless at first when they saw themselves with all that hair. They then sat there, just looking, not knowing what to do. But when we left Ms Erasmus' house, each one of them was holding her hat and I said - "no more hats, ah?" And they both shook their heads and said: "No, no more hats." When we got home we had another "fashion shoot" - Lydia found a dress that's too small for her and we took pictures of them posing in the dress. After half an hour Azola went to the mirror and said - "Ah, my hair is so messy!"
"The nurses and the girls at St Joseph's couldn't believe the change in Azola's appearance and just shrieked in absolute delight. Nurses at Red Cross were equally impressed with Janine.
"We bought face cream, brush, mirror, shampoo and hair clips in a toiletries bag for each girl. "They were very, very happy."
Janine subsequently had some dramas with her wig - partly because she insisted on wearing it all day every day as well as all night. It became grubby and nurses were unsympathetic about her wish to wear it. As it wore out with somewhat excessive use, the hospital however, helped with providing another one.
Updated September 2002.