Few words can be so hard to say to a child as "You have HIV". Some parents cannot bear to utter them, which is one reason why Rosie Turner, assistant director of the London-based charity Body and Soul, has seen children react to them quite a lot: "When we disclose to children, sometimes they run out of the room. Sometimes they leave the building. Sometimes they are completely silent. Sometimes they laugh, because they are so nervous. It takes a long time for it to sink in. It may be months, or a year, before a child will say in a group 'I am HIV-positive'. As you tell them more, they want to know more facts. But their initial reaction is 'I am going to die'".
Body and Soul was set up 10 years ago to offer support, though not treatment, to children, women and heterosexual men with HIV (the blood-borne Human Immunodeficiency Virus). These days almost 2,000 families are on its books. They attend various self-help activity groups for adults, parents and under-fives, primary aged children, 10 to 12-year-olds and, the highest-profile group, Teen Spirit: the only group in the UK for the 13-20-plus age group who all know they carry HIV.
The teens in particular have been drawn to campaigning and outreach.
Several recently met Westminster MPs from the All-Party Parliamentary Group on Aids, to call for broader HIVAids education in schools. Some regularly speak on the radio and to groups, including school assemblies, about living with HIV: "In assemblies people gasp sometimes" says Lynn Hill, 22. "When you talk about how HIV is transmitted. Sometimes you get a clap and a cheer. Or people come up and say you are very brave, or I never knew that."
There is a lot people don't know about HIV, says Body and Soul's policy officer Rena Greifinger, not least that it is far from the death sentence it once was, that its transmission is almost impossible via social or even physical contact apart from sex and needle-sharing, and that there are more than 1,000 children in this country infected with HIV, most of whom inherited it from their mothers. (Another 10,000-plus experience HIV in their family, without having it themselves.) Families keep their HIV status a desperate secret, because of the stigma associated with the virus, and other people's fears of catching it themselves. Stories of bullying, school suspension, even of families being chased out of their communities abound. "It's hard to talk about it openly", says Lynn Hill, "because people will be afraid of us".
To make people less afraid, Body and Soul launches a high-profile campaign this month. Its deliberately up-beat advertisements on TV, radio, bus shelters and elsewhere, are titled "A Smile is a Gift", with accompanying text-donation scheme and donated "smiles" from celebrities like Thierry Henry, Emma Bunton and even Wallace and Gromit. Their youth-oriented message is that people with HIV need your smile, says Rena Greifinger.
Which is not what Body and Soul clients experience at school, she adds:
"The message they hear in school is HIV is far away in Africa and it doesn't affect us. Or that it's to do with sex and drugs. But there are people in the classroom living with it, knowing their mum or dad is living with it, and they can't put their hand up and say."
Money raised by the campaign will extend the charity's services into a new building in Islington, which includes a study support room and a media suite, but also the play and counselling space that clients and volunteers - among them teachers, nurses and social workers - currently use. Weekly after-school workshops where children and teenagers talk, play games and act out issues like prejudice, trust and sharing will continue. They will be extended into more peer mentoring work (some teens have already been trained for this by Childline counsellors) including telephone links: health professionals now refer children from as far away as Brighton, but isolated families in Wales and the West Country have also begun to request telephone support. Lynn Hill is one of these mentors; Max, 17, is another.
Both want to share what they have gained, he says: "Here everyone understands what I'm going through and doesn't judge me for it. I feel safe."
HIV is a hard subject anywhere, but particularly in schools, says Rena Greifinger: "Teachers are understandably nervous about teaching it. Talking about sex is difficult." Smiles are simpler, but they pack a powerful emotional punch: "It's easier to talk about stigma and prejudice. If young people are taught about stigma and prejudice before HIV even comes into the picture, they are more prepared for it. This is about having young people understand what acceptance is. Not just tolerance, but acceptance. Everyone is so paranoid and on guard these days."
* The Body and Soul A Smile is a Gift campaign begins on May 15. For more information see www.bodyandsoulcharity.org
* Keeping safe with HIV - what schools need to know - see May issue of TES Extra for Special Needs, the monthly subscription newsletter from The TES. To subscribe call 0870 4448627 or visit www.tes.co.uk