'A lot of teachers still buy into the view of gaunt creatures on their deathbeds'

27th May 2011 at 01:00
It's 30 years since the HIV virus first came to our attention, but many young carriers find the attitudes they encounter in schools are driven by the doom-driven outlook of the Eighties.

When Emmanuel was born, his mother had no idea that she was HIV- positive. Emmanuel was infected during childbirth: he has been HIV- positive from the moment he drew his first breath.

Fifteen years later, Emmanuel found himself sitting in the classroom of his south London comprehensive, listening to a lesson on how HIV is passed on. "The teacher said that, if someone starts bleeding, you can't touch them, because you run the risk of catching HIV," he says.

He put up his hand and pointed out that, actually, oxygen kills the Aids virus very quickly: the chances of contracting it from spilled blood are extremely low.

"No," the teacher replied. "That's not true."

Emmanuel stood his ground. "Just because you're the teacher," he began, "doesn't mean you know everything." The teacher disagreed; he sent Emmanuel out of the classroom.

More than 11,500 children in the UK have been born to HIV-infected mothers since the disease first came to prominence in the 1980s. In London, almost four out of every 1,000 women who give birth are HIV-positive. Some will be aware of their condition; others will have absolutely no idea. It is not automatic that the child of a woman with HIV will be born with the virus: infection rates in Britain stand at just below 10 per cent. When a mother is not on medication, the chances of infection are significantly higher.

"The archetype of the teenager I work with might have been born in sub- Saharan Africa - Uganda, Zambia, Nigeria," says Katherine Cox, who works as a counsellor with HIV-positive teenagers. "Maybe their dad died in Africa under mysterious circumstances. They come over here with their mum, make friends, go to school. And then their HIV status is disclosed to them at around age 12.

"But then there are also young people who are infected through sex with someone. That can happen while they are still at school."

Babies born with HIV are usually on some form of medication from birth onwards. Often, however, children are not told the reason for all the pills: they only know that they have a condition that necessitates regular hospital check-ups.

"At that age, they are not old enough to manage it - not to disclose inappropriately," says Dr Cox, "And if HIV is in the family, they are potentially disclosing the status of other people, too."

By the time she was pregnant with his younger brother, Emmanuel's mother had been diagnosed as HIV-positive. His brother was therefore born by Caesarean-section and remained virus-free. Emmanuel insists that he is not bitter about this. "It's just the luck of the draw," he says. "I don't mind. I'm happy that I have it, and not him. It's not generous - it's love." There is a pause. "I was just unlucky. I don't mind," he says again.

Most children are told the reality of their situation during the early years of secondary school. By this age, they will be mature enough to understand that this is not a piece of news to be announced during the casual weekend updates of Monday morning form-time; it is a piece of news that requires enormous emotional adjustment. The disclosure can shake a child's entire sense of family stability. New questions arise: is that why dad died? Is mum infected, too? Is she dying? Am I?

"I found out when I was 12," says Moses. Now 23, he spent his teenage years at an east London comprehensive. "My only understanding of it was through things like EastEnders. I thought, right, I have 10 years to live. What should I do? Should I go abroad and go travelling? Or just give up?

"The feeling of giving up was mostly in my head. I broke down and cried that day. I remember thinking, `I'm going to die, I'm going to die. My life is like a ticking bomb.'"

This, according to Jo Robinson, of HIV charity the Terrence Higgins Trust, is not an uncommon reaction. "A lot of people feel suicidal when they find out they have HIV," she says. "Even though they are worried that their life is now shortened, they still feel suicidal. It's just so stigmatised. They internalise the stigma of it.

"Cancer may be difficult to talk about, but once you do, you get unconditional support from other people. With HIV, you get unconditional blame. You have to talk about why it's not your fault, why it's not your mother's fault. It's not just a simple disclosure."

However, the reality of this experience rarely features in PHSE lessons. Teachers - many of whom grew up on the doom-filled Aids-awareness campaigns of the late 1980s and early 1990s - often harbour outdated notions about HIV, unwittingly spreading misinformation and half truths.

Raised on reports of HIV's virulence, few non-experts know that contemporary medication significantly reduces its potency and, therefore, infectiousness. Others fail to realise that initial scare stories are not an accurate reflection of reality. Contact with an HIV-positive person's blood, for example, is unlikely to result in infection.

"A lot of teachers still buy into the stereotypical view of gaunt creatures absolutely sick, lying on their deathbeds," says Emmanuel. "They forget that, because of our situation, we take greater care of our health. We eat well, we exercise, have better sexual health practice. That is what people in school don't understand."

But Emmanuel was unusual in his willingness to point out his teacher's inaccuracies. "I've always been quite opinionated," he says. "I say what is on my mind. Because of that, people were, `OK, he's just being himself.' But I know people who've done that, and people have come up to them and said: `Are you HIV-positive?' Then they've been subjected to taunts and jibes."

Though most teenagers with HIV contract it passively - merely through being born - the virus carries significant stigma nonetheless. It is not only an illness, but an illness associated with sex and, often, gay sex.

None of the pupils Dr Cox works with has disclosed HIV status at school. "HIV equals you're sick, equals you're going to die," she says. "Or HIV equals you've slept around. Or HIV equals you're dirty, you're dangerous, you're risky. You don't know how people are going to react: your best friend today might not be your best friend tomorrow. Then what do you do?"

"I didn't tell anyone at school," Moses says. "I know my friends and people around me - I know their preconceptions about it. I know how I felt before I was diagnosed. I thought it was either something for gay people, or abroad, in Africa. Something that wouldn't affect me.

"I used to be part of the jokes in the playground. People said it came from monkeys. Or people make "your mum" jokes. You know: `your mum's got HIV'. So when it came to me, I knew exactly how people would be."

Christine agrees. "I've had the same best friend since I was four," she says. "And she doesn't know at all." Eighteen-year-old Christine does not have HIV, but her father did: he died when she was three years old. Like her HIV-positive contemporaries, she finds herself living a double life, anxious to hide the truth of her father's condition from classmates.

"I would be scared of them insulting my dad," she says. "Saying things like: `Oh, he must have got around.' They'd make jokes around it - `Eurgh, you've got Aids.' I thought they wouldn't want to be around me any more.

"But you can't really blame people for how they react. They're genuinely petrified. They don't have the knowledge and they don't understand."

Beyond casual classroom insults, there is the mine-filled territory of burgeoning sexuality to navigate. If telling a friend is fraught with fear of adverse reaction, telling a potential sexual partner presents an entirely new level of terror.

"Relationships become much, much more problematic," says Dr Cox. "And they're problematic enough as a teenager, anyway. Everything just becomes much more complicated."

Sex suddenly becomes actively dangerous: a means of passing on an incurable virus. HIV-positive teens cannot even contemplate sleeping with someone without first negotiating condom use. For those who contracted the virus through sex, there is the additional weight of guilt: sex becomes loaded with self-recrimination and shame. And then there is the blind panic that comes when pupils confide their status in a sexual partner, only to find that the relationship breaks down. "`Oh my God,' they think," says Dr Cox. "Who is that person going to tell?"

In fact, many HIV-positive teenagers simply believe they will never be able to have a long-term partner or a full sexual relationship: life, suddenly, slips out of their reach.

"Just like everybody else, they can fall in love, they can succeed," says Ms Robinson. "Those kinds of messages are really, really useful from teachers. There are lots of people out there who have HIV and have come to terms with it. Teachers need to subvert the doom-and-gloom view."

Unlike Emmanuel, Moses was not angered by his school's PHSE lessons. He simply found them irrelevant. "There was a small section in a book, something about killing the white blood cells," he says. "It was very vague. Next to nothing. You tend only to do it from a scientific point of view - nothing about how the people who are affected have to live a double life, because of people's preconceptions."

In fact, Dr Cox suspects that most of the teenagers she works with simply tune out completely during lessons in which HIV is mentioned. "They make themselves anonymous," she says. "They are physically there, but not mentally or emotionally. They don't want to draw attention to themselves."

"There is definite fear," says Christine of the "half an hour - something ridiculous like that" - that her Luton secondary devoted to HIV education. "But maybe it's a vicious cycle: people are afraid of what they don't know, but people with HIV don't want to say anything."

For this reason, Jo Robinson highlights the importance of positive role models: virus carriers who can come into school and talk about their jobs, their partners, their full lives. Raised on a reality of lengthy lifespans and ever-improving medication, these people no longer see HIV as teachers might.

"People think that HIV limits your choices," she says. "But these people have everything that teenagers look for."

Dr Cox, meanwhile, emphasises the importance of HIV support groups, which provide teenagers with release from the guilty secret they carry with them at school. And it is up to teachers, she says, to make pupils aware of such groups. "Just act as if there are pupils in your class with this," she says. "You won't know. But that is what I would advise teachers: act as if there are people in your class infected or affected by HIV."

* Pupils' names have been changed

www.tht.org.uk, www.bodyandsoulcharity.org.


Almost 14,000 people between the ages of 16 and 24 have been diagnosed with HIV since the Aids epidemic began.

In 2009, there were 6,630 new diagnoses of HIV in Britain. More than one in 10 of those being diagnosed was under the age of 24; 121 were aged between 16 and 19.

In 2010, 132 teenagers between the ages of 16 and 19 were newly diagnosed with the virus. The same year, 18 people under the age of 24 developed full-blown Aids. An additional 15 died of Aids-related illnesses.

In Britain, rates of HIV transmission from pregnant mothers to their babies is very low. From the start of the epidemic through to June last year, 11,429 children have been born to HIV-positive mothers. Of these, 883 - 8 per cent - became infected themselves.

In 2009, 74 British children were born with HIV: just 1.1 per cent of new HIV diagnoses that year. By contrast, in 1999, 12 per cent of diagnoses were newborn babies.


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