Living by numbers

Roel 29 I’ve worked for 932 days as a research physician focusing on HIV. 759 days ago I had to tell someone for the first time that he was HIV-positive. Since then 11 men from the group of 500 men that I’m studying have been diagnosed with HIV. 376 of the men in this group have now started taking Pre-exposure prophylaxis (PrEP) and no longer need to be afraid of getting HIV/AIDS. I’ve dated 1 person who is HIV-positive. Despite the taboo surrounding HIV, he felt able to tell me about it on the 3rd date.

Marja 53, I was diagnosed with AIDS when I was 24. I was given 6 months to live. I caught it from my boyfriend in San Francisco. He died 13 years ago. At first I refused therapy. That’s probably why I’m still alive. I was in hospital on the critical list 3 times, and 1 time I actually said goodbye to all my loved ones. When I started therapy, I was on 32 pills a day. I’m now on my 9th regime and only taking 5 pills a day. I’ve been with my present partner for 13 years, and we’ve been married for 5 years. I’ve now lived for 28 years with the pressure of wondering who to tell about my HIV status. At first I wanted to be unrecognisable in pictures, but this photo project made me realise that I’m ready to start cautiously coming out of the shadows.

Riet 79, I was born in 1939 and I’m the mother of 2 sons: Eric (1963) and Bob (1961). Eric died from AIDS in 1992 at the age of 29. He tested HIV-positive in 1988, when he was 25. He became ill quite quickly and 2 years later he was diagnosed with AIDS. In 1989 he was one of the founders of ActUp Amsterdam. Eric was very active, going to demonstrations and chaining himself to a fence with a group of others. I often used to drive the 38 km from Lisse to Amsterdam to help him. Eric would have been 54 this year. Losing a child is like an amputation. It’s horrible. But while I lost Eric, I also gained at least 12 new friends, with lots of affection and love. The deep pain never goes, though I no longer spend every day feeling sad.

ELIANE 41, I was born in 1976 in Burundi. In October 2003, I was almost 26 years, my doctor in Angola told me that I was hiv positive. Hiv was found during a routine control for my diabetes. The doctor said that I was going to die and I was never allowed to become pregnant. I went to South Africa for treatment. I started medication on 2 january 2004 until today. I have switched 4 times because of the combination with my other medication. I have been always fit. After waiting 3 years to die I decided in 2006 to get a baby. I was happy to see that it was possible to have a hiv negative baby. So in 2008 I got a second baby. I am now hiv positive for 14 years. Last year my CD4 count was 640 and my viral load below 40. In 2005 the virus became undetectable. In 2016 my viral load became 0. In 2014 I told my story to the media for the 1st time!

JEFFREY 27, Ik weet sinds juli 2010 dat ik HIV+ ben. Ik was toen 20. Ik heb 6 dagen in coma gelegen door acute aids- diagnose (viral load boven de 4 miljoen, CD4 op zijn laagst 19). Ik heb 9 maanden moeten revalideren voor ik weer een redelijk normaal leven kreeg. Ik ben 2 keer van medicijnen gewisseld, momenteel dus aan mijn 3e combinatie. Mijn viral load is undetectable en de CD4 cellen boven de 900. In 2012 ben ik voor het eerst in de media verschenen. Sinds die tijd heb ik voor het verspreiden van een positief geluid zeker 15 interviews gegeven en mediaoptredens gedaan.

Oscar 63, I was 34 when I was told I was HIV- positive, on 28 June 1988. My doctor said I would probably live to see 35, but that I wouldn’t make it to 40. I’m now 63. In 1994 I had only 25 CD4 cells. I flew to New York on flight KL541 and became one of the first Dutch people to receive the cocktail. That meant taking 36 pills every day. I’ve taken more than 100,000 pills since 1994, been to the doctor more than 250 times and buried more than 50 friends. I’ve been a lawyer for 36 years now, been HIV+ for 29 years, been treated by Sven Danner for 25 years, take 1 (big) pill per day that combines 3 drugs; my viral load is undetectable, I have 1,200 CD4 cells and have another 37 years to go before I reach 100.

Orlando 63, I was infected on my 39th birthday, on Queen’s Day, 30 April 2004. I became ill on 13 May and tested HIV-positive on 2 July. I only started taking medication 2 years after becoming infected, 3 pills a day. I’ve only changed medication 1 time – 10 years ago, since when I’ve been taking 3 pills a day. The virus is now undetectable, but the drugs have made me shrink, from 1.80 m to 1.77 m. I have a son and a daughter from before I became infected. I work as a counsellor for the AIDS Healthcare Foundation. Numbers are a big part of what we do there: we want to test at least 3,000 people a year and help ensure that 20 million people worldwide are on medication by 2020. It’s around 15 million today, so we’ve got a long way to go

Anne 27, I’ve known since 2006 that I have HIV. I was 16 at the time. I was infected by my first boyfriend. My first HIV test was negative, but my boyfriend tested positive. Because of the incubation period I had to keep going back to be tested for 3 months. It was only the 3rd test that showed I was HIV- positive. I’ve lived with the virus for more than 10 years now, with no drugs. I’m the mother of 2 healthy children. Even though I’m not on medication, my CD4 cells have never been below 800, and they’re usually above 1,000. I started sharing my story with others in 2009.

'Living by numbers' Portraits HIV/Aidsmonument Amsterdam

In 2016 the HIV/Aids monument by Jean-Michel Othoniel was unveiled in Amsterdam. A sculpture in the form of an abacus named ‘Living by Numbers’. This series of photos of the same name is part of that event and will be exhibited next to the HIV/Aids monument until 01/10/2018

At the moment there are about 22,100people diagnosed with Aids or HIV living in the Netherlands. A further 18 people are found HIV positive every week. Worldwide, every 20 seconds someone dies because of an Aids related condition. Keeping the focus on HIV and Aids alive is therefore of vital importance.

These portraits are about the impact of living with HIV. The portrayed people tell their personal story relative to numbers, while at the same time literally and figuratively ’exposing’ themselves.

In 2016 werd in Amsterdam het Hiv/Aids monument 'living by numbers’ een kunstwerk van Jean-Michel Othoniel in de vorm van een telraam onthuld. Deze foto-serie is daar onderdeel van en wordt tot 1-10-2018 tentoongesteld naast het HIV/Aidsmonument te Amsterdam.

Op dit moment leven er in Nederland zo'n 22.100 mensen met aids en hiv en iedere week krijgen gemiddeld in Nederland nog 18 mensen de diagnose hiv. En wereldwijd overlijdt er nog elke 20 seconden iemand aan de gevolgen van aids. Het levend houden van de aandacht voor hiv en aids is daarom letterlijk van levensbelang.

Deze portretten gaan over de impact van leven met hiv, de geportretteerden vertellen hun persoonlijke verhaal (in relatie tot getallen) waarbij ze zich letterlijk maar ook figuurlijk 'bloot’ geven.