After The Ban

I shall not say I hate the USA. What about Jack Kerouac, James Baldwin, Sylvia Plath? What about Sonny Rollins and James Brown? They are all ‘Americans’ after all, and the deep influences of those artists (and many others from La Yuma) are part of the weave of my soul.

Also I can’t hate the USA, because I was, for the fist time since my diagnosis, lawfully allowed to visit. They let me in with all my medication. My precious ARVs. Last time I went they were all hidden in a vitamin bottle, in the suitcase I checked in. Terrified that if the suitcase went missing I would be in a foreign country where medical care is extremely expensive. Even with an HIV friendly travel insurance the idea of running around Miami”s doctors getting a script for ARVs, and having to anticipate the costs from my pocket, was making me extremely anxious.

But this time I walked with my head high through custom. All my medications in their proper boxes in my hand luggage. Confident I had a right to visit my friends who are like my extended family. Friends who are as important to my health and well being as those pills I have to swallow everyday.

Something else made my heart warm toward the USA.
During my time in Miami the historical Health Bill was passed. The Bill is crucial on securing medical care to many people living with HIV in the US, and many other people also living with life threatening illnesses. I remember in 2008, when I was at the Mexico conference, the shock I felt learning that 18.000 people had died of AIDS that year because of the long waiting lists on Medicare. I couldn’t believe this could happen in the richest country in the world.

Regan Hoffman reports on the impact the Health Bill will have on PLHIV on her blog rightly titled: ‘Obama Cares’

Activism and Glam

Cyndi Lauper came to visit PW on the 1st of March. I waited to blog about it because I wanted a nice picture to go with it: and here we are Angelina Namiba, Cyndi and I, looking glam.

Cyndi Lauper and Lady Gaga are spoke people for Viva Glam. Viva Glam is a line of make up products by MAC that gives  all its profits to the MAC AIDS Fund,which is one of the biggest private AIDS fund in the world, I think only second to Bill Gates’.

Well, the radical activist within me can’t help making some mental cynical comments about setting up an AIDS Fund as a clever marketing strategy. I say this from personal experience: every time I have been to buy a Viva Glam lipstick I always end up with at least another couple of products.  Obviously, I also have a very vain glam compelled side, so I was very excited of having a make over by MAC make up artists and meet Cyndi Lauper.  I have also to admit  that as much as I am suspicious of capitalism,  it is brave for such an high profile company to choose to support such an unpopular cause as HIV and AIDS.

On the day many of PW volunteers and staff came to participate to the event. Many of us didn’t dare standing in front of the camera. But Angelina, Charity and I were interviewed by Cindy on the challenges we face as women living with HIV, even in a country like the UK. The interview has apparently been broadcast on CNN and Sky News, but I have not been able to see it.

MAC AIDS Fund has donated £50,000 to Positively Women to support a project providing peer support and leadership skills to  women who are HIV+ and pregnant or want to become pregnant, Angelina will be the project manager.

Many women get diagnosed HIV positive while they are pregnant, this is because when you are pregnant you are always offered a test. As much as this is a positive thing, because it will allow the future mothers  to access treatment and information which will decrease the chance of passing HIV to their babies to less then 1%, it is also the worst time of your life to receive an HIV diagnosis. Imagine having to deal with discovering you have an incurable, potentially fatal, sexually transmitted disease and at the same time preparing to give birth and welcome a new life. You will be thorn  so  deeply by very contrasting feelings: joy for the baby, fear of sickness, fear to let others know and be judged, feeling isolated etc. Even if the chances of transmission are so low- you will be filled with worry, you will have to make difficult decisions about whether to have cesarean section, not breastfeeding etc.. Meeting another woman who lives with HIV is  extremely important for those women so that they can gain strength, hope, and a vision of a fulfilled life with HIV.  At PW we  also hope that the new Sexual Health Strategy the Department of Health is developing for the next decade will include a recommendation to test women – or even better couples – who access contraception or conception services, so they can find out about their HIV status even before they get pregnant.

You can see more about policy recommendation on HIV and motherhood on ICW website

I Have Something To Tell You

I have just received Regan Hoffman’s novel  ’I Have Something To Tell You’ . It is her memoir: the personal story of  an HIV positive woman who has taken the decision to stop living with a secret. Regan is now one of the few women living openly with HIV in the USA. In the past few years she has become one of the foremost activists for the rights of people living with HIV globally. 

I would like to reproduce here a few paragraphs from the prologue of the book. Those words deeply resonate with me. I believe this is one of the most accurate depictions of internalized stigma I have read, and why ‘Speaking Up’ can be so healing and liberating.

‘I am a walking biohazard – a heated container of deadly viral particles . I don’t look sick. But I could kill you. I am part of a tribe of people bound by bad biology: misunderstood, deeply feared because of the human immunodeficiency virus I carry and bearing a crippling stigma that has long kept me silent.

Writing this is a bloodletting. My pen pierces an hematoma of shame that swelled until holding it in became too painful. This is how it had to happen: the pain of not telling became greater than the fear of what would happen if I told. When too much vital life force collects in an unnatural place it can’t be contained. It turns fetid and festers – infecting the person who holds it with a vicious disease. Eventually it explodes outwards.

The flood of relief following the sting when the secret is lanced is replaced by the awkwardness of staring at the mess the release has created. Will you look at that? Now what have you done? Who is going to clean it up? But ultimately you are healed The virus threatens death but stigma surely kills. Other people’s fear and ignorance about what is nothing more than a retrovirus deny my dignity. And there is not point in living without that.’

 You can buy Regan’s memoir here.