Posted on 13 September 2010.
Amena Zaman, Education and Outreach Manager at CWAC
THANKS to Carla Bruni-Sarkozy and Annie Lennox, we have recently learned much about the heart-breaking plight of children born with HIV on the African subcontinent.
But what of the children born with HIV living in the UK? You might be surprising to hear that there are around 1500 children and young people known to be living with HIV in the UK.
Mercifully these days, rates of mother-to-child transmission in the UK are less than one per cent, thanks to use of antiretroviral therapy in pregnancy and protocols for managing mum and baby during pregnancy, labour and in the early months.
But there was a time, not so long ago, when UK mother-to-child transmission rates were as high as 50 per cent. Back then, many more babies were born HIV positive. Many died but some survived and against the odds have now made the transition to adolescence and adulthood.
I wanted to get an insight into these young people and find out what it was like to live with the virus for all your life, perhaps only becoming gradually aware of you status during their teen years. How do these youngsters cope with everyday teenage life – having to keep such a big secret at such a precious age? How do they deal with going to school, having a crush on someone or going to college and getting a job?
To get answers, I turned to Children with Aids Charity (CWAC), one of the leading organisations working with HIV-positive children and young people in the UK, offering support, guidance and advice.
On my way to meet their Education and Outreach Manager Amena Zaman at their Old Street offices, I felt nervous about intruding. This closely-protected group rarely courts attention for obvious reasons. I knew that even my HIV status would not guarantee me preferential access to this vulnerable group.
As I was guided over to Amena’s desk I was struck by the many pictures of young smiling faces covering the walls. As we made our way up to the attic to do the interview I noticed a dilapidated office server (its side panel removed) was being cooled by a fan to prevent it overheating.
Clearly this was a charity that prioritised its work before its infrastructure unlike many in the third sector today.
As we settle into the interview I notice a duck suit to one side and asked what it was for?
It turns out that Amena is not shy at coming forward when it comes to fundraising: ”I was standing outside Finsbury Park Station in that suit shaking a bucket not so long ago, actually I wore it for walk for life as well,” replies Amena we a laugh and a grin. Unaware I was hatching a plan for a photo opportunity.
DISCRIMINATION AT SCHOOL
Discrimination at school is still a big problem for HIV positive youngsters, says Amena. A young person might be advised to keep their status a secret at school for fear of recrimination and some who may not know their status are reliant on the adults around them to protect their confidentiality.
In 2008, The National Aids Trust carried out piece of work that eventually saw the Department of Children Schools and Families change its guidance and approaches to HIV in schools for both HIV positive children and HIV positive teachers. Yet stigma and discrimination persist.
“I have had various phone calls since 2008 from school teachers saying ‘It’s not fair it’s wrong, we should know a child’s status, just in case another child catches anything,’ says Amena.
“Schools often can’t cope with a child who is HIV-positive. We still get calls about children being withdrawn from schools. I got a phone call from a primary school two weeks ago saying that two children had been moved out of their school because a teacher had disclosed their status.”
“Local authorities will always save teachers that make these breaches by pleading ignorance, they say ‘we are NEW to this’ even though they have the guidelines. They will then turn round and say that the organisations that have done the guidelines have not made them clear enough.” The NAT guidelines are crystal clear.
Amena is a trained teacher with a background working in exclusion, youth work and pupil referral units. This proved useful when CWAC started getting referrals from families with complex problems
“I found quite a few teenagers had dropped out of mainstream schools as young as 14. Many were excluded for being labelled badly behaved or having challenging behaviour, but I could see that the young people presenting at the office wanted to make something of themselves and achieve something.”
“These young people living with HIV were struggling to re-enter education or to go and find work because they didn’t have the basic skills. The first thing we ask a young person when they arrive is ‘what do you enjoy doing?’ and we find a suitable course that they like, say drama, music, IT or swimming and help them to achieve.
CWAC’s education and outreach programme works with many voluntary organisations to provide work experience in safe and supported environments and has become an integral and successful part of the organisations remit.
“Outreach is something that the government needs to take note of and produce more people like Amena.”
GOING THE EXTRA MILE
On the previous day, Amena had rushed to an East End court to sit with a young HIV-positive man being sentenced.
“I attended the earlier court case and had written a letter of support for the young man’s defence lawyer. On this occasion the outcome was a good, the boy received a suspended sentence and community order.
“He gave me a big hug and said thank you. I told him it was my pleasure, urged him to stay out of trouble and gave him a tenner because I knew he didn’t have any money and needed to eat.”
Christmas is another time when Amena and her colleagues go the extra mile. One 16 year old young woman referred to CWAC after losing both parents had been moved into a council flat on her own.
“On my first visit I found her sitting in the dark eating digestive biscuit’s . Here was a girl who has just lost her mother and was completely traumatised having to deal with bereavement and loneliness. She had a real sense of loneliness and was struggling to deal with issues that even an adult would have found hard to cope with.”
Amena ended up inviting girl, now in her second year at university, to share Christmas day with her family.
This approach is important for the young people who often come from one-parent families or who have no living parents at all. Many or have a fractured sense of family or lack strong foundations.
“One thing about Amena is that I can communicate with her when I need to as she does not cut off at 5pm like most workers,” said one of the young people at CWAC.
The notorious CWAC duck costume makes an appearence.
CWAC ‘success stories’ are encouraged on to become role models for their younger counterparts. Amena will link older children with younger ones and pay them for providing peer support.
“A lot of the young people referred to CWAC find it difficult to open up and talk. In time they do begin to talk to their peer groups and those they trust most, such as doctors that they have built up strong relationships with.”
HOW WORK EXPERIENCE CAN REALLY WORK
Amena told me about a 17 year old girl who was viciously attacked in the playground after a lecturer disclosed her status to fellow students.
The girl came to CWAC three weeks later saying she wanted to produce a booklet to educate others and was offered the chance to update the charity’s Voices of Children booklet. The girl learned about publishing and design software and the young people got a chance to talk about being HIV-positive.
Amena then proudly showed me another leaflet written and designed by another young person who did work experience at CWAC.
“This young lady came back to see us six weeks ago she is now 24 yrs old and she has finished a degree in marketing with a 2.1. When she first arrived as a teenager at CWAC she was very troubled and had been abandoned.”
“One of the things we insist on here is that the children take full credit for their work. The young people own the work and take ownership over it,” Amena added.
Outreach has been good, because it gives me confident in things I would be afraid to do,” said one of the young people that CWAC help.
POVERTY AND DEBT
Amena spends a lot of her time worrying if her charges have eaten or if they are taking their meds. Many struggle with poverty and debt.
“It can be simple things like not having enough money to buy decent food or travel that reinforces your sense of isolation. Some can’t afford to put money on the electricity or gas key so they can’t cook it, “Amena explains.
CWAC’s hardships fund is a core part of their remit. They award small grants for essentials like washing machines, baby start-up grants, children’s clothes, shoes, winter coats etc until the age of 18.
“One young person was recently re-housed recently into permanent accommodation and she is trying to do a university course. The council have repeatedly fined her for not paying her rent. How is a 20-year-old at full time student supposed to pay £80 on rent when she has waited six months for her student loan grant to come through? “
“Financially without CWAC I would be dead. I had no money to live: food, gas electric, no doubt about it, outreach has always helped,” another of Amena’s charges told Positive Pulse.
NOT A 9 to 5 JOB
Amena’s job might be paid 9-5, but children often call her out of hours and some needs won’t wait and making an evening hospital visit to a 22 year old in hospital who has a CD4 count below 5, is sad reality.
“I have been in hospital 3 times this year alone and each time, Amena has been there for me throughout. I have never met any other professionals that would go out of their way to do what she has done for me. It’s all about quality not quantity, that’s why Outreach is something that cannot be ignored,” said another young person.
When I asked Amena what was the most important thing these young people needed, without hesitation she leaned forward and replied: “Love, acceptance, not to be judged, the basic human right to love and receive love from people. They need to be listened to. I think we all forget we have two ears and mouth for a reason and that’s because you’re meant to listen more and talk less.”
I would like to personally thank the young people who allowed Amena to reveal some of your personal stories. I hope that this article will go some way in helping others to understand what it may be like to be born HIV-positive. JW
- There are approximately 1500 HIV-positive children/young persons in the UK.
- Since the beginning of the epidemic 847 children have were born HIV-positive in the UK .
- HIV is not passed on by spitting, biting, small cuts or grazes, sharing utensils or toilets seats.
- There has been no known case of HIV transmission in a school.
- According to figures compiled by the CWAC it is estimated that there are approximately 19,000 HIV-affected children living in the UK today.
To find out more about the work of CWAC or to make a donation go to www.cwac.org
You can make a direct difference on how much the UK donates to The Global Fund’s ‘Born HIV Free’ by signing the petition found at: www.bornhivfree.org
To learn more about NAT guidelines for head teachers go to www.nat.org.uk