Speech given by Diana, Princess of Wales on "Women and Children with Aids"
Edinburgh 8th September 1993
Some sections of the media would have us believe that the dark shadow of AIDS is fading away. The predicted explosion has failed to happen and retreated back to those who've so often been condemned or ignored.
Yet common sense and the testimonies of healthcare workers, worldwide, tell us a very different story. The truth is, that most people infected by HIV are heterosexual and the disease is spreading, throughout the world, at a staggering rate.
By the year two thousand - only seven years from now - even the most conservative estimates predict there will be more than thirty million people, worldwide, with HIV - equivalent to more than half the population of the United Kingdom!
Mothers and children are being 'infected' or 'affected' by the Aids virus in greater and greater numbers, every single day.
A mother with HIV or Aids doesn't give up the responsibility of caring for her children easily. Often she is the sole parent, the wage earner, the provider of food, the organiser of daily life, the nurse to other sick members of the family, including her own children. Relentless demands continue to be placed on her, at a time when her own health and strength are falling away.
As well as the physical drain on her energy, a mother with HIV carries the grief and guilt that she probably won't see her healthy children through to independence. If she has passed on HIV to one of her children, she will have to witness their illness while trying to make something of their short life. Worrying as to what will happen to them if she dies first.
Trying to plan for her surviving children's futures won't be an easy task! At what stage should she give up her role as a parent? Who can she rely on to take care of them? Where can she find the right kind of support to decide what is best for them? How can she be sure that her family history and traditions won't be lost?
Yet the biggest fear of the mothers I've met with HIV or AIDS is not their disease. They've learnt to live with their disease, especially, as for much of the time they are feeling well! No, what terrifies them most, is other people! For despite information about Aids being available now for nearly ten years, these women still face harassment, job loss, isolation, even physical aggression, if their family secret gets out.
How then is it possible for them to decide the moment to explain to their children what is happening in their lives? Do they tell the neighbours? Do they tell their children's school? Is there anyone they can truly trust or is it safer and wiser to struggle on alone?
Yet these mothers don't ask for sympathy. Their need is for understanding. To be allowed to live a full and active life. To be given the support to love and care for their children, for as long as they can, without carrying the added burden of our ignorance and fear.
And what of the children who live with HIV every day? Not because they're necessarily ill themselves, but because their family life includes a mother, father, brother or sister who has the virus. How will we help them come to terms with the loss of the people they love? How will we help them to grieve? How will we help them to feel secure about their future?
These children need to feel the same things as other children. To play, to laugh and cry, to make friends, to enjoy the ordinary experiences of childhood. To feel loved and nurtured and included by the world they live in, without the stigma that AIDS continues to attract.
By listening to their needs, really listening, perhaps we can find the best way of helping these children to face their future with greater confidence and hope.
The effect HIV and AIDS has on mothers and children, when the disease is allowed to spread unchecked, was brought home to me on my recent visit to Zimbabwe. I saw for myself the very personal tragedies whole families were suffering.
The damage it was doing to their communities, to the country as a whole, both socially and economically, was devastating.
Yet the support these families were given by those around them was a lesson for us all. They were being treated with compassion and respect, by their friends and neighbours, for what they were having to go through. And were still accepted as an important part of their community, not as outcasts to be ignored.
Here in the United Kingdom the number of women and children known to be infected or affected by HIV or AIDS is still comparatively small. But if we continue to believe that AIDS is someone else's problem, we too, could so easily be facing the same devastating destruction of our nation's way of life that is already happening in other parts of the world.
In my daily life I've seen for myself the tremendous work being done by the many charities and government organisations who are searching for new ways of tackling the dilemma of AIDS. The importance of this conference, here in Edinburgh, cannot be underestimated. It brings together those people who represent milestones of achievement around the world in dealing with the complexities of HIV and AIDS in mothers and children. And also, those who've pushed back the boundaries of our understanding of how the infection is transmitted and how it can be treated. Your exchange of ideas and experiences will, I am sure, make a difference to the future well-being of us all.
I feel certain, we as a nation still need to develop a deeper understanding of what AIDS really is. To possibly, be just a little more aware and just a little less embarrassed about how the virus is transmitted, even when we don't really see ourselves at risk. In that way, perhaps, we may play a small part in helping to protect a person we love from becoming infected with HIV.
For those mothers and children already living under the dark shadow of AIDS we need to help them back into the light. To reassure them. To respect and support their needs. And maybe, we will learn from them, how to live our own life more fully, for however long it is.
© Peter Settelen 1993