Here are some notes and thoughts from the session.
Human Rights are part of what it means to be human. They belong to each and every one of us, and they cannot be taken away. They were firstly written down following the second world war as a response to the horrors of the holocaust . The 1948 Universal Declaration of Human Rights has been signed up by every country in the world. However the declaration is not a legally binding document, so many countries developed other treaties and laws to enshrine Human Rights in their legal systems and make them effective. Here in the UK we have the Human Rights Act.
The values that underpin Human Rights are: Dignity, Autonomy, Participation and Equality.
The Human Rights Act mainly regulates the relationship between the states and the individual, and aims to ensure that all services provided by government funded bodies follow Human Rights.
For people with HIV in the UK the articles that have been most used are Article 3 (right not to be treated in an inhumane or degrading way) and Article 8 (right to respect for private and family life); sometimes also Article 14 (right not to be discriminated) has been used. Moreover people living with HIV in the UK have also used other pieces of legislation, such as the Disability Discrimination Act, and the Equality Act to defend our rights.
In UK based HIV advocacy Human Rights law has been used mainly to stop deportation of very sick HIV positive people to countries were they had not access to medication, and where they would have died in an inhumane way. Human Rights law has also been used towards local authorities who had withdrawn vital benefits or services to people with HIV who were terminally ill.
What stroke me during the training is that Human Rights law in the UK seems to kick in only in very extreme, life or death kind of situations.
However I ask myself: are we using Human Rights to their real extent? The endemic stigma so many of us who live with HIV in the UK continue to endure is a Human Rights violation. It dehumanizes us, it pushes us in lives which are so much less or what they could be. I have met many people living with HIV who haven’t told a soul about their conditions ( some , only a few weeks ago…) and live crushed under the weight of secrecy.
I often speak to people who have stopped dating, who have never started a family, who have been so depressed that they haven’t been able to keep up a job, or plan any provisions for their old age.
The experience of negative judgments, rejection and violence in our communities has denied many of us of love, respect and dignity. And without those we cannot be fully human.
Obviously thanks to ARVs we are not under the threat of physical death, but many of us live lives not worth living. Isn’t this an human rights issue? Shouldn’t’ ‘The State’ and our health and social care providers be doing more about this.? It seems to me that upholding Human Rights should be more than just reactively persecuting violations
I know at the moment that the British HIV Association in collaboration with Public Health England is developing Patient Reported Experience Measures (PREM) so that the well being of people living with HIV can be measured not only in terms of medical tests, such as CD4 count and Viral Load, but also by what is important to us. I hope that there will be something to measure people experiences of social connection. It would be important to detect when people have never told anybody of their HIV status, and that people can be referred more effectively to adequate support, such as peer support. I hope that hospitals that don’t address isolation could be seen as failing, like hospitals who have large numbers of people with a detectable viral load.