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HIV doesn't have to be taboo!
MESSAGE FROM THE EDITOR photography by Henri Blommers
As editor in chief of hello gorgeous, I’m often asked if people with HIV still experience stigma today. Sadly, the answer is a resounding “yes”. I regularly hear terrible stories from people who have had to put up with negative remarks from others who judge them for being positive. Alie, who you can read about in this second English edition, is a perfect example. Now and again I encounter stigma too, but these days I don’t let it get to me. For instance, late last year a Dutch fundraising campaign for HIV sparked outrage in the positive community by focusing so much on fear that the message got completely drowned out. Years ago a campaign like that would have hurt me deeply; nowadays I might still get mad, but I won’t lose any sleep over it. Stigmatisation requires two parties: the party doing the stigmatising and the party being stigmatised. Over the years I’ve learned not to play the latter role. The trick is to rise above it. My reputation might get hauled through the mud, but I always retain a clear idea of who I am – and who I’m not. I don’t need anyone else’s approval, or disapproval, to validate myself. So the stigma just slides off me, like water off a duck’s back. To everyone living with HIV, I would say this: the most precious gift you can give yourself is a sense of self-worth. That way, you become immune to the judgments of others. This second English edition of hello gorgeous is being published to mark our magazine’s fifth anniversary. It comprises English translations of a selection of articles that have appeared in recent issues of the Dutch print version. These are real stories, told by real people who have learned to value themselves for who they are. Enjoy! Leo Schenk Editor in chief
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CREDITS Cover photo by Henri Blommers
magazine about HIV for&&door by you voor jou
EDITOR IN CHIEF Leo Schenk
GRAPHIC DESIGN Stefan Silvestri Adrian Silvestri www.gebr.silvestri.nl SUBEDITORS ON THE DUTCH EDITION Durk Doornbos Henk Hageman
MESSAGE FROM THE EDITOR
Hannah Jansen ART EDITOR Henri Blommers
HELLO GORGEOUS TEAM
Do you worry about your medication while you are on holiday?
LETTER TO MYSELF
“Keep working on your health”
“I never want to feel ashamed or guilty again”
Déjà vu: Going back to “ground sero”
Ashton Applewhite fights ageism
Andrea Bandelli, Henri Blommers, Inês Brito, Durk Doornbos, Henk Hageman, Hannah Jansen,
Leo Schenk, Adrian Silvestri, Stefan Silvestri TRANSLATIONS Allen Gibson Tom Johnston
Karen Kraan ADVERTISING SALES Robert Witteman firstname.lastname@example.org SUBSCRIPTIONS
email@example.com WEBSITE MANAGEMENT
Twelve Trains www.twelvetrains.nl The paper version of this magazine is published in Dutch four times a year by Stichting hello gorgeous.
www.hellogorgeous.nl firstname.lastname@example.org This is a special online English edition,
comprising articles selected from recent issues of hello gorgeous. © May, 2017 No part of this publication may be reproduced in any form
SITES & SERVICES
whatsoever without the prior written consent of the publisher.
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Valentijn de Hingh 14
Kenny and Heidi 20
Barbara Kemigisa 24
Chronic pain 44
Wilford and AndrÃ© 50 hello gorgeous 3
GORGEOUS THINGS Photography by Harrie de Fotograaf Translated by Allen Gibson
Start saving now Itâ€™s always good to be prepared, certainly when it comes to money. Nowadays people can still count on a government pension, and maybe a pension from an employer too. But will that still be the case in 20 years? With this doll money box, you can start saving now. Lapin & Me Doll Money Box Available in various colours â‚Ź39.95 www.klevering.nl 4 hello gorgeous
XXL We all hope to make it to our senior years with our faculties intact. But age often brings with it limitations. Thankfully the devices we need to help us as we get older are getting more stylish by the day. This landline phone with XXL buttons combines functional with hip. Who knows, maybe weâ€™ll see a stylish walking frame next? Landline phone with XXL buttons â‚Ź349.95 www.lowvisionshop.nl hello gorgeous 5
Light as air The bats may be decorated with pouting lips and a curly moustache. But what really stands out about this table tennis set are its balls. They’re light, they can’t be crushed and they don’t make a sound. But it’s best to play indoors or the wind might blow them away. Uncrushable €29 huzidesign.com/product/ ping-pong-paddles/ 6 hello gorgeous
Bags of character
At first glance, it appears to be a brightly coloured drawing of a bag. And you have to look very carefully to tell whether or not itâ€™s actually real. Appearances can be deceptive though: you can cram quite a lot into these 2D cartoon bags. 2D cartoon bag Available in different models and sizes Prices start at â‚Ź19.95 ditverzinjeniet.nl/ 2d-cartoon-bag hello gorgeous 7
SURVEY Analysis by Andrea Bandelli Translated by Tom Johnston
It wonâ€™t be long before itâ€™s summer, a time of year when many people go away on holiday. That can be a source of stress: what should you do about your HIV pills? Will you be able to bring enough? Will you find it confusing to be in a different time zone? And once you are finally able to relax, will it be hard to remember to take your medication every day?
Do you worry about your medication while you are on holiday 8 hello gorgeous
140 35% 32% 25% 8% 42% 24%
respondents with HIV
of whom were diagnosed with HIV between 2010 and 2015
of whom were diagnosed with HIV between 2000 and 2009 of whom were diagnosed with HIV between 1990 and 1999 of whom were diagnosed with HIV before 1990 of whom had been taking medication for less than 6 years of whom had been taking medication for more than 16 years
said they worried about their medication while they’re on holiday
Most common reason* for worrying:
were afraid of losing their medication.
People who were recently diagnosed with HIV and who haven’t been taking medication so long were a bit more likely to worry about their medication while on holiday.
* Multiple answers were possible.
What else is on your mind? “I got completely stressed out in Spain when I accidently forgot to take one of my pills. Have you ever tried to get the medication you need from a pharmacy in Spain? It’s impossible, and most pharmacies won’t help you find a solution either. You can only get it through a hospital, where you might well find that no one speaks any English. It can take hours before you’ve got the pills you need.” “I usually take long holidays of at least four weeks, and I often go to the West Coast of the US. Before I leave, I make sure I’ve got the addresses of HIV clinics, pharmacies and specialists, along with a helpline number for people with HIV. I’ll almost always take the quantity of medication I’ll need and then half that amount again, just in case I get sick or don’t make it home on time. I am generally well prepared anyway, but this is something extra to think about. I also ask my pharmacist for an up-to-date list in English of all my medications with their proper doses.”
“Relax! Half the world travels with their pills and there’s not a customs service anywhere in the world that’s interested in your medication!” “Luckily the hassle of medication that needs to be kept refrigerated is a thing of the past for me. I used to get really stressed about that!” “I’d really like to go on holiday to both Russia and Iran, but I don’t dare do that on account of my medication. I’m worried those countries wouldn’t let me in.” “I think we all tend to worry too much. I used to do that too, but now I’m more relaxed about when I take my medication. Sometimes I’ll take it earlier and sometimes later, depending on the situation. I live in Hungary eight months out of the year and I just make sure I have enough medication and I consult my pharmacist about that.” “My doctor says I shouldn’t worry about different time zones. For the type of medication I use it’s more important that I take it with food. I just stick to my normal rhythm and take my pills whenever I have my evening meal.” hello gorgeous 9
COLUMN Written by Bertus Tempert Translated by Tom Johnston Illustrated by Karina Grens
Tapping beers A., a man I’d worked with as a buddy in the 80s and 90s, was cremated on a beautifully sunny morning in July. Back in 1990 he was 62 and I was 26; I was a rookie and he was a wise old man. For nearly three years we both looked after Ernst, a quiet and rather melancholic Jewish man.
Besides being a buddy, A. also did other volunteer work. He worked behind the bar at the Dutch LGBT rights organisation COC, for example, and did various things for the Dutch HIV Association (HVN). A. was HIV positive and was quite open about it. Even in the years after we stopped 10 hello gorgeous
working together, we remained friends. He and his husband worked behind the bar at my wedding reception. A. was a charming, amiable, kind and welleducated man. In the end, he died of pneumonia. During his cremation service a quick succession of speakers stood up to commemorate him: a volunteer from COC, his husband’s two daughters, and finally the widower himself. The COC volunteer spoke of tapping beers with A. behind the bar, both daughters shared memories of their father’s husband, and the widower honoured and thanked “his great love,
his everything”. It was all very moving. Yet none of them said a single word about HIV or about the work that A. had done as a buddy or for HVN. If it weren’t for his photograph on the coffin, I could easily have thought I’d turned up at the wrong funeral. The whole service was over within half an hour and suddenly we were all standing in line for a cup of coffee and a slice of cake. As I happened to be right behind the COC volunteer
who had spoken during the service, I struck up a conversation with him. He told me that the family had expressly forbidden him to talk about HIV. He was not even allowed to mention the words “HIV” or “Aids”. I couldn’t let go of the idea that A. hadn’t received the last respects that he deserved. His years of working for people with Aids and his own HIV had both been completely ignored. Even in progressive white, gay circles, HIV can clearly still be taboo.
SURVEY Written by Leo Schenk Translated by Tom Johnston Photography by Marjolein Annegarn
Tjepko (47) has been working full-time as an airline steward for the past 23 years. He’s had HIV for nine years and has been taking HIV medication for the past four years.
“I always take enough with me for an extra ten days” Twenty-three years is a long time. Don’t you ever get bored? “Those years have literally flown by. Even after all this time, I still really enjoy the work I do. It’s the best job there is.” What are your favourite routes? “I fly to all our destinations outside of Europe and I particularly like going to South America, Asia and South Africa. I prefer not to go to India as that’s just not my country: I find it dirty there, I don’t like the food and I don’t really get along with the people.” Which medications are you taking? “Kivexa and Viramune. I don’t have any sideeffects and I don’t need to take them with food.”
Do you ever worry about your medication when you travel? “No. I’ve found a good way to deal with the time difference. I always take them at around three o’clock in the afternoon Dutch time. So if I’m heading east, that means taking my pills at some point in the evening, but if I head west I’ll take them in the morning.”
Have you ever had to stay somewhere longer, for instance due to a technical failure, and run out of pills? “I always take enough with me for an extra ten days, just in case I get stuck somewhere.”
Do you have any tips for people who do worry about their medication when they’re going on holiday? “A lot of people have told me Nothing ever goes wrong? that they take their pills just “Once every so often. Esbefore they go to bed. But that pecially if I’m travelling to can be tricky if you have time Asia, and thus losing time, differences to deal with. I’d I’m often extra tired in the tell them to just stick to the evening, and sometimes time of day that you normally forget to take them.” take them at home. For one day it’s not going to make any Have you ever forgotten difference if you take your to take your pills along pills a bit later or a bit earlier. with you on a trip? You’re going to be gone for “No, because I always have two or maybe three weeks them with me in my hand and when you get back home luggage, since checked-in you’ll immediately be back in luggage can always get lost.” the same rhythm as before.” hello gorgeous 11
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LETTER TO MYSELF Written by Leo Schenk Translated by Tom Johnston Illustrated by Henk Hageman Photography by Henri Blommers
“It’s bee n been sc t wo yea rs sinc a re d to e I foun de at h o d out t h wit h t h f HI V a n a e v ir us d at firs t I had HI V. I’d . t I h at e d hav in a lways “ I e n de g to live d up ge tt ing se wa nt to v e r come a ely dep n y wh e re s s e d , a nnua l r e ne a r infor m me. Tha t hin k ing no o a t iona l e in A m s ne wou t ch a ng ven te r ld e d a f te a nd som da m. There wa t for people w r I at t e n de s s uc h a it h HI V e of t he d t he at C a r r é m h ad b v T he at r e een liv in a r iet y of peop le g wit h “In t he wit h H HI V for beginn m a n y y I V t he r e , ing I w s e c ret , a ea r s. s but one c S u nd a y a r e f u l t o ke ep on Face my HI V in Octo b o ok . T ber I w s t at u s he r e a c posit iv oke up t ions I e. I’ ve n a nd dec st r ict ly r e ceived e v I shou ld e r re g re ided t w ere a ll h t t e d do h (51) ea r t-wa o sha re it ing t ha aga in a ave done it mu t r ming a . f te r t h a O ch ea rli nd t. er, beca n t he cont ra r y u s e I re : a lly blo “I’m a b ssomed or n wo r r ier, so Since m meone y diagn who did os I live m n’t used ore con is I’m better a to let h ble to p sciously me p e a im s ut t hin . It m ay ce of m g s in per elf enjoy life. s in o u nd s t r d. I a m For t he spect iv a nge bu mu fir e, a nd t HI V h way it lo st t ime, for ins ch more able a s brou to enjo t a nc e , I ok e d , r a gh y wh a t boug ht t he r t h life br in t a ca r ju a n for a g s me . s n t y pract “In 2026 ica l rea because I li ke – wh e n d s o t he n I’ I d re a m s. ll be 61 – I am g of t rave oing to lling to qua lit y b dist a nt t ime w it h my la nds w e enjoy ing life photog fa mily it e ven m raphy. C h my a nd lov reat ing be able ed ones love, Leo, of sp ore. t hings to cont , ending of wit hou inue m to peop t a ny pr pa int ing a nd y work le who d e a oin s s a volu s u re. A n h av e x per ie nteer, o d I hope g nce how e just hea rd t f f e to r h at t he ing sup impor t y h a ve por t a nt it is H I V t o . “I hope I h a ve a to m a k listenin k now from e it at le g ea r. s ay t h a a s t to 8 t I’ ve ha 0, b d a fa nt a st ic lif ut if I died tod e. ay I cou “ T he a d ld hone v ice I’d st ly give my hea lt h f a nd on your re ut ure self is t h a ll, lea r lat ions is: keep n to app hips work in re t hings g on yo off unt il ciate t he beau wit h fr iends a ur nd f a m t if u l t h later – ju il ings in s t do t h life a nd y. A bove em now stop pu .” tt ing
How do you see your life ten years from now? What are your hopes and expectations? What advice would you give to your future self? THIS TIME: Dirk
“Keep working on your health” hello gorgeous 13
INTERVIEW Written by Anouk Benden Translated by Allen Gibson Photography by Henri Blommers
It’s perfectly possible for people with different goals to work together so that they can be more effective. Transwoman Valentijn believes that diversity and inclusivity go hand in hand on many different levels. She thinks it’s natural for contributions to come from lots of different people, even if things don’t always work out that way in practice.
VALENTIJN DE HINGH (26) and I met for this interview on a beautiful sunny evening, shortly after the wonderful photographs accompanying it here had been taken. Valentijn is a model, writer and DJ. Yet many people might actually know her from 14 hello gorgeous
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INTERVIEW the documentary that journalist Hetty Nietsch made about her between the ages of eight – when Valentine had a boy’s body – and seventeen, when Valentijn decided to undergo gender realignment surgery. For my interview, however, I’ve chosen to leave that documentary in the past and concentrate on asking about Valentijn today. What makes her tick? What are her hopes and fears? And why did she decide to be ambassador for Pride/EuroPride 2016 in Amsterdam?
AMBASSADOR It’s clear why Valentijn accepted the invitation to be the 2016 ambassador. “First of all, I knew it would be a lot of fun. But more importantly, it’s an institution. Pride is the time of year when the message of acceptance for LGBT people is at its loudest. I think it’s crucial to stress the importance of diversity and inclusivity. That’s why I’m so happy that Pride is moving from being an event focused on gay men to an event for the entire LGBT community.
“Many transgender people are far from proud of who they are” “Many transgender people are far from proud of who they are. That’s why 16 hello gorgeous
it’s so important for such a diverse community to come together and openly celebrate the freedom to be yourself. I hope that many transgender people who haven’t yet felt this sense of freedom, and perhaps feel isolated, know that it’s their party too. At the same time I think it’s important that we present a united front. Unity isn’t always a given. For instance, the interests of gay men and transgender people don’t always coincide. But we should never forget that with the 1969 Stonewall riots we started the struggle for equality together. And it would be a shame for us to get separated along the way. At the end of the day, we’re always stronger together. The fact that the Pride organisers asked me to be ambassador is a clear statement that this matters to them too.”
MAN OR WOMAN? “I’ve always been very open about my own past and experiences, in the hope that I can be a role model to other transgender people. But I also want to make a clear statement that transgender people have a place too, and that we shouldn’t be regarded as strange or disturbed. I’d like to go even further than that, though. I also think that society as a whole should be more open and more critical of itself. “The fact that people are categorised as either a man or a woman determines a lot. It tells you who you are, what you
are capable of and what our society will allow you to do. But these inflexible labels don’t work for transgender people. For example, when I was 16, I would get extremely nervous if I had to fill out a job application form that asked if I was a man or a woman. In many cases identity is not set in stone and people can’t be pigeonholed. But as long as that keeps happening, the outcome will be inequality, bullying, aggression and exclusion.
“Playing with your identity should be normal. That way, everyone can discover what feels right for them” “Playing with your identity should be normal. That way, everyone can discover what feels right for them. But we’ve got a long way to go before we get there. It’s sometimes said that community is a verb, not a noun; we need to keep engaging with one another constantly. But not everyone is willing to make the effort. If things get too complicated, we tend to give up too quickly. Thankfully, I do see progress being made in the way that transgender people are discussed. The tone has become more respectful in the past few years.”
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LOSS OF SUPPORT Living with HIV is not something that Valentijn focuses on. But her belief that everyone should be free to be themselves and choose how they live their lives is universal, so it applies to people with HIV too. “The thing that always gets me about HIV is that people often lose support as their social safety net falls away. And that undermines their unconditional sense of security and protection. You don’t just see that happening in Africa; it still happens in the Netherlands too. There’s still a great fear of infection. In this respect, too, society should make an effort to be more open minded and better informed, so that people don’t face stigma and taboos.
“You can have the biggest impact if you start a dialogue with the people around you” “HIV is a particular issue for transgender people, because all over the world a higher proportion of them are sex workers. This exposes them to a heightened risk. Transgender people are often consigned to a fetish niche, and sex work may be the only way for them to experience sex and
love. Turning to sex work can also be a financial necessity, since transgender people face discrimination in the employment market.”
ROLE MODELS Valentijn doesn’t really believe in role models. But she is convinced that it’s crucial to keep fighting to put wrongs right. “I know that role models can be important. But you need a diverse range of role models. Otherwise you just get one person’s story, opinions and vision. Everyone can be a role model: you can have the biggest impact if you start a dialogue with the people around you. That’s much more effective. “In any case, I’ll always keep striving to break taboos, to start a dialogue and to keep it going. That mustn’t stop. Pride is an extension of this. I still struggle with my own identity, but it’s not an ordeal. It’s something that I’ve always had to deal with and that will never change. I welcome the questions that I still have. I’m entitled to be who I am, including all that entails.”
The 2007 documentary Valentijn featuring Hetty Nietsch can be viewed online at npo.nl.
FIGHTING FOR EQUALITY The Dutch Transgender Network (TNN) advocates for transgender people in the Netherlands and provides support to members of the trans community and their loved ones.
CV NAME Valentijn de Hingh AGE 26 years old CAREER Model, writer, DJ MOTTO “Life isn’t straightforward. It’s complex and full of paradoxes. Anyone who tells you otherwise is mistaken.”
(Dutch website: transgendernetwerk.nl)
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COMING OUT Written by Leo Schenk Translated by Allen Gibson Photography by Henri Blommers
Kenny and Heidi Kenny (34) , from Flanders, met Heidi (37) three years ago during a day out with some neighbours. One year ago the couple had a son, Sehn, who was conceived naturally. Kenny is HIV positive; Heidi is not.
Kenny: “When we first found out you were pregnant, we were a little shocked. It had happened naturally but unexpectedly. But we quickly accepted the news with love and joy.” Heidi: “We had been planning to marry last year, but the baby made us put our plans on hold. Now we’re going to wait until he’s able to walk and carry the wedding rings to us himself.” Kenny: “Our families were stunned. ‘How can she be pregnant when you’re HIV positive?’ So you explained everything to them.” Kenny:
“Our families were stunned. ‘How can she be pregnant when you’re HIV positive?’ So you explained everything to them” Heidi: “I told them there’s no harm in having sex without a condom because you always take
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COMING OUT your meds and they keep the virus at bay. That means that you can’t pass on HIV. I promised them that I get tested regularly and that there’s no need to worry. That reassured them. But what if one day I’m told that I’ve contracted HIV too? Even then, I know that I’ll be able to see my children grow old, thanks to the drugs that are available. Things would be very different if I had cancer and only had six months to live – that would really be a death sentence.” Kenny: “Of course, you’d rather not have either of those conditions. I feel fine, but some people with HIV have a tougher time, physically or mentally.” Heidi: “It’s perfectly possible to have a great life if you’re positive. Don’t think the worst. Get out there and live your life!” Kenny: “I don’t believe that everyone needs to be as open about it as we are. But people with HIV should no longer be treated as second-class citizens – that only makes them stay in the closet. I took part in the Flemish version of Big Brother. You’re locked up in a house with 15 people. My reason for taking part was to show that nowadays you can still have a good quality of life even if you’re HIV positive.” Heidi: “There are too many people out there who don’t know enough about living with HIV. Their ideas are wrong and out of date. More people need to do what you’ve done and be open about 22 hello gorgeous
it. We’ve not had any bad responses. And even if we did get any, we wouldn’t really care.” Kenny: “It’s even harder for straight men with HIV to be open about it. Lots of people still think you can only get the virus through gay sex. But it can happen to anyone.”
“It’s perfectly possible to have a great life if you’re positive. Don’t think the worst. Get out there and live your life!” Heidi: “We’ve started running a bed and breakfast together. I hope that this campaign will attract more visitors – people with HIV in particular. I’d like this to become a place for people with HIV to meet.” Kenny: “If everyone with HIV came to stay with us, we’d have a great year!”
You can read more about Kenny and Heidi on the Dutch campaign website “Coming out of the closet with HIV”: hivuitdekast.nl
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WORLD Written by Natasja Bijl Translated by Tom Johnston Photography by Hilary Heuler, Barbara Kemigisa and Judith Leussink
Barbara Kemigisa (30), from Uganda, has not been left unscathed by a history of abuse. Her family has been of no help to her whatsoever: when they found out she had HIV, they turned their backs on her. For years, she has struggled merely to survive. Despite the very tough life that she and her daughter lead, she deliberately chooses every day to keep hope alive. By sharing her story through Life Reporters, she wants to break down taboos and inspire others.
“Keep hoping and dreaming” “AS A YOUNG GIRL I was sexually abused by my uncles. It started when I was six and went on and on for years. Each time I would lose a bit more of myself, until I became addicted to a certain sexual behaviour. Around 24 hello gorgeous
the time of my puberty I had many different sexual partners. It was never about love. These were acts of desperation to fill the void that I felt – although that never really worked, of course. I just sank deeper and deeper,
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withdrawing further into myself. My family eventually rejected me. They never believed me and thought the abuse and the illness were my own fault.”
of my lack of self-esteem. With God’s help I managed to forgive myself. Yes, in spite of it all, I can love myself again and share that love with others. That’s my message: it’s never too late to decide to start loving yourself.”
NEVER TOO LATE “When I became pregnant at the age of 22, the doctors discovered that I had HIV. I can still clearly remember the moment they told me that I had tested positive. There I was, alone, worried, and talking softly to myself. At one point I told myself: Okay, the events in your past were horrible, but the future is still yours to determine, despite your disease.
“I refused to listen to all those negative stories about Aids” “I truly believe that the moment I said those words to myself, my life started over. I took control for the very first time. That gave me a real sense of power. I refused to listen to all those negative stories about Aids. Instead I decided to follow my own path, together with my baby, and to make the best of it. “In the months that followed, I thought a lot about what had been done to me as a young girl and about the course my life had taken since then. I realised that none of it was my own fault. My sex addiction was the result
“Despite my initial confidence, things got worse after her birth. In those days I was renting a room that I often shared with other young people who, like me, had been rejected by their families and needed a place to stay. Sometimes there would be two adults and two children sleeping on my mattress. My room
“Before I gave birth I found out all I could about how to prevent passing my HIV on to my baby. Rather than breastfeed her, I would have to use a bottle. Unfortunately I couldn’t possibly afford to buy baby formula since I hardly had enough to eat myself. I had no idea of where I could get help, and I became desperate just thinking about it.
“That’s my message: it’s never too late to decide to start loving yourself” “My newborn daughter screamed with hunger. Without milk she would surely die. I knew I had to feed her, even though she might get HIV if I gave her my breast. I was torn that whole first night, but then suddenly I felt an incredible sense of calm. I felt certain that if I breastfed my daughter, she would survive and that we could deal successfully with the whole issue of HIV together. I went ahead and mixed the baby formula with my own milk.
became a place where people would come together to escape their day-to-day worries and problems. It was painful for me to do it, but sometimes I would have to turn people away because there just wasn’t enough space and food to go around.”
HELPING WHEREVER I CAN “Unfortunately I never had the chance to study. I earn my money by selling jewellery that I’ve made myself. When young people come to the clinic to pick up their medication, I show them how they can support themselves, too, by making and selling bracelets and necklaces. Sometimes I give them money so that they’ll be able to come back to the clinic the next time. hello gorgeous 27
WORLD “People here often cancel important appointments for medical check-ups just because they can’t afford the fare to get there. That’s terrible! I can’t bear to see people suffer in sadness or make the same mistakes that I made. I help wherever I can, and because God has told me that He will provide for all my needs, I give away practically everything I have. “I hope there will come a day when I have more to spend, so that I can do so much more for those who are the hardest hit and have no one else they can turn to.”
GETTING PEOPLE TALKING “In the past, our president and his wife did their best to warn the population about HIV. In radio shows and in adverts, among other things, people were told what precautions they needed to take. Healthcare institutions now generally provide medication and voluntary testing is available. “Unfortunately people still make too little use of these possibilities. It’s not only the transportation to the health facilities that is a problem, but also the stubborn Ugandans who still confuse Aids with malaria and who still have unprotected sex. “The slogan ‘Faithful to your partner’ was used for quite some in Uganda and there was also a campaign promoting condom use. The young people here are more 28 hello gorgeous
worried about not getting pregnant than they are about getting HIV. I think the government has failed by not being clear enough about the consequences of this virus and by its ongoing failure to make enough money available to change that situation. “Stigma is widespread. People with HIV are excluded. I want to get everyone talking about the disease, for example by wearing T-shirts that I’ve written slogans on. I wear them in public places, including at church, to raise awareness of HIV.
“I can’t bear to see people suffer in sadness or make the same mistakes that I made” “It’s women, in particular, who are humiliated and raped and who live with a great sense of shame. I often say to the young mothers who come into the clinic here: You are an example. There is always a child who looks up to you and admires you. Teach children to love themselves and to choose to have positive thoughts. Keep hoping and dreaming. I hope that my words are heard and we can draw on our inner strength to feel connected with others again and to conquer our fears. Our time has come.”
LIFE REPORTERS Barbara is one of the Life Reporters of STOP AIDS NOW! The Life Reporters are five young people from different African countries – Zimbabwe, Uganda and Senegal – who are all working to bring about a world without Aids. Each month they write blog posts about their lives and whatever is on their minds. Those are remarkable stories by remarkable people. Read more on www.stopaidsnow.nl/ lifereporters.
NAME Barbara Kemigisa AGE 30 years old RELATIONSHIP STATUS Married since November 2015 CHILDREN Has a six-year-old daughter INSPIRATION Oprah Winfrey: “Her childhood was comparable to mine, and everyday she inspires so many people around the world to live a meaningful life!” MOTTO “Though you have been abandoned, and hated and shunned, I will make you an eternal pride, a joy for ever and ever.” Isaiah 60:15
COLUMN Written by Mirjam Schulpen Translated by Allen Gibson Illustrated by Karina Grens
No disguises TALKING ABOUT HIV still means breaking a taboo. Not so long ago I encountered it once again. I’d been asked to give a talk to a room full of doctors and nurses at a medium-sized hospital on the subject of living with HIV. The nurse who was organising the event telephoned me beforehand to discuss what I would be saying. “Would you like to wear a wig?” he asked. “Just in case you ever regret being so open?”
No doubt he meant well and was just trying to protect my privacy. But right away I felt hurt and sad. Would he have made the same suggestion to someone coming to talk about diabetes? Standing up and saying that I have HIV may expose me to risks. The risk that I might be rejected, excluded or blamed. But if I tried to disguise myself with a wig, it would seem
like I was ashamed. I’d be sacrificing my dignity too. It wouldn’t reduce the stigma or the taboo. So that’s a “no” to the wig. On the evening of the talk, the nurse organising the event greeted me with a handshake and asked, “Are you a doctor or a nurse?” When I said, “I’m the mother with HIV who’ll be giving the talk,” he seemed confused. Apparently I didn’t conform
to his expectations of what someone with HIV looked like. At that moment I realised that it’s still absolutely crucial for us to be seen and heard. To be open about being HIV positive, without any disguises. So who wants to join me?
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INTERVIEW Written by Charlot Spoorenberg Translated by Allen Gibson Photography by Linelle Deunk
Doesn’t HIV just affect gay men and African women? This is one of the preconceptions that Alie (40) has had to face since her diagnosis. Alie is the mother of two beautiful children. Some people say that it’s her own fault that she’s HIV positive.
“TWO YEARS AGO I thought I had the flu. I was running a fever and my condition kept getting worse. My son sent me to see my doctor, and my doctor immediately referred me to the hospital. It was actually a bad case of pneumonia but the antibiotics they gave me
“I never want ashamed or didn’t work. After a series of examinations, someone suggested that I get tested for HIV. The result came back positive. I was shocked. But at least I could now get the treatment I needed.” 30 hello gorgeous
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LAST CHANCE “The pneumonia almost killed me. They tried to administer oxygen to me in a variety of ways, but it didn’t help. The final attempt was my last chance. My family had been called to say their farewells. While they were in the waiting room, a trolley was wheeled past, carrying a deceased patient covered with a sheet. They got a hell of a fright, but luckily it wasn’t me. But I nearly did end up like that.
CV NAME Alie AGE 40 RELATIONSHIP STATUS Has a boyfriend, Karel CHILDREN Two MOTTO “It is what it is.”
“When I was diagnosed with HIV, even the nursing staff in the intensive care unit didn’t have a clear idea of the consequences” “When I was diagnosed with HIV, even the nursing staff in the intensive care unit didn’t have a clear idea of the consequences. I was told that I’d have to take 30 pills a day and that I’d soon be dead. Later a specialist came to visit and told me those claims were untrue. I’d be able to live a long life, despite being positive.”
WILDFIRE “Finding out that I had HIV was a big shock, but at least it meant that something could be done 32 hello gorgeous
for me. I was so sick and short of breath that the diagnosis came as a relief. I was given the right antibiotics and finally got on top of the pneumonia. Only then could I begin to think about what had happened to me and how I could deal with this condition.
and information for the partners and children of heterosexual women with HIV. Our family had to track down too much of the information by ourselves.”
“I was so sick that I wasn’t aware of everything that was going on. My friends and family had to take care of some things, like telling my children’s school about my HIV. Once I got out of hospital, I realised a lot of people already knew about it. In a village, news like that spreads like wildfire.
“I felt myself getting stronger again and wanted to return to my job at the fruit and vegetable seller’s where I’d worked before going on sick leave. Of course, my colleagues had heard about my condition and their responses were not encouraging. They were afraid of becoming infected.
“Right away I found myself confronted with a great deal of ignorance. My son’s teacher asked whether it was okay for my son to play with the other children. It’s a shame that so few people know what being HIV positive entails. But I prefer people to ask me questions themselves rather than talk about me behind my back.
“A nurse at the hospital found out and together we organised an information meeting. Some of my co-workers had an open mind and accepted the information they were given. Others saw it differently and couldn’t believe that it was safe to work with me. That caused some horrible situations. Like the colleague who wanted me to wash my coffee cup last, so that nobody else had to use the same water.
“HIV doesn’t discriminate – anyone can get it” “I think it’s a shame that HIV awareness campaigns target gay men or African women with babies. HIV doesn’t discriminate – anyone can get it. It would be good if more people realised that and if there was greater sympathy for people with this illness. There also needs to be more help
“I was also criticised for not getting tested earlier, despite knowing that I’d had unprotected sex. Before getting pneumonia I’d been sick for a while and had undergone all sorts of tests, but neither the doctor nor I had thought to have me tested for any sexually transmitted infections. “My colleagues were also afraid that customers would stay away and that they’d lose their jobs as a result. At that time another colleague had cancer
and was getting lots of support. Unfortunately I got almost none. It was as if they thought I’d got sick on purpose.
“Once I got out of the hospital I wanted to push Karel away. I thought that he should look for a healthy partner. But Karel wouldn’t let himself be pushed aside”
He sees that I’m still the same person and he’ll always support me. Last year we moved in together and he helps make sure that I take my meds on time. My levels are all good and the HIV is undetectable [which means it can no longer be measured in the blood or passed on to others – ed.]
it was yesterday. It’s actually a miracle that I’m still here. On the invitations to my birthday party it said: ‘It is what it is’ and that’s exactly my approach to life these days. That’s what my illness has taught me. HIV has become part of who I am. I never want to feel ashamed or guilty again, like I did in my old job.
As long as I keep taking my meds and look after myself, I’ll be able to live to a ripe old age with HIV.”
“After my diagnosis, a friend asked me: ‘Are you going to die?’ Of course I’m going to die. But that needn’t happen to me any earlier than to anyone else.”
“I continued working there for a short time longer but then was sacked. The reason they gave me was that the company was doing badly. Now when I apply for a job I tell them about my HIV status right away. I don’t want to find myself in a similar situation again.”
KAREL “My children both tested negative and so did my partner, Karel. Once I got out of the hospital I wanted to push him away. I thought that he should look for a healthy partner. But Karel wouldn’t let himself be pushed aside. Thank goodness. He was shocked by the diagnosis, but started reading up on the subject right away. He is close to a number of other people who have a chronic condition, and that’s exactly what HIV is.
EMOTIONAL “I’ve just turned 40. It was quite an emotional moment, not just for me, but also for my loved ones. My family remembers that time in the hospital as if
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PHOTO STORIES Text by Leo Schenk Photography by Henri Blommers
Déjà vu Going back to “ground sero”
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Some people forget where they were when they became positive – however difficult that may seem – or can only make an educated guess. But others are able to pinpoint the exact spot.
“He was the last resident in an apartment block that was soon to be demolished. There was no furniture, just a mattress on the ground. Now there’s a mosque where that building once stood.”
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“My intuition told me to leave, but I decided to stay.”
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â€œThat evening I swapped intimacy with my boyfriend of the time for an encounter with the unknown. Even ten years later, I still regret that.â€?
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“That wonderful spot is presumably still there today. But I’ll bet that sweet guy isn’t.”
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â€œIt really knocked my socks off. But in the end it all got ironed out.â€?
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ACTIVISM Written by Anouk Benden Translated by Tom Johnston Photography by Anya Katz
Ashton Applewhite (64) is an American writer who stands on the barricades. She’s done with all the prejudices about getting older. With her manifesto This Chair Rocks, she hopes to start a revolution against ageism – a revolution that can’t come soon enough for her.
Never too old, never too late! AGEISM IS A form of discrimination since it essentially involves thinking about people differently – or acting differently towards them – based solely on how old they are. Familiar stereotypes include the notions that old people are incompetent or that wrinkles are ugly.
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ACTIVISM The consequences of ageism can be far-reaching and they are often not immediately visible. Some older people refuse to use a walker due to the stigma they associate with those – even if it means they can never leave home. Applewhite believes that ageism and the fears about the vulnerabilities of old age are deeply rooted in our society. “It’s not about how we look or what our sexual preference is. The socially constructed ideas that have emerged over time serve a social and economic purpose. They’re about how people in power assign meaning to how people look or to their preferences. That same mechanism forms the basis for homophobia and the fears and ignorance that people with people HIV are confronted with. Our capitalist society puts people who are least conventionally productive at a disadvantage; we see them as being somehow inferior.
“Ageism and the fears about the vulnerabilities of old age are deeply rooted in our society” “The consequence of marking people as ‘other’ – other skin colour, other sexual preference, other religion – is that their welfare also seems less important. That’s one of the reasons five out of six incidents of 42 hello gorgeous
elder abuse in the United States go unreported. Discrimination is the most important barrier to participating fully in society.”
SELF-STIGMA The complex problem of ageism is reinforced by the self-image that older people have. We are reluctant to admit that we are ageing. We don’t want to see ourselves as getting older – not even at some point in the future. This denial is what blinds us to ageism in ourselves and what perpetuates it in a thousand ways. “By blinding us to the benefits of ageing and heightening our fears, ageism makes growing older far harder than it has to be. I, too, put my head in the sand. People often told me that I looked so good for my age. That’s very nice, but deep down it never really felt like a compliment. Now, eight years later, I know why. As long as people thought I looked younger than I was, I didn’t have to face the fact of ageing. It’s a classic case of denial. In the end, the way you look and your age are irrelevant. It’s about what kind of person you are and what you do.
“As long as people thought I looked younger than I was, I didn’t have to face the fact of ageing”
“We really need to get rid of our negative perception of ageing, but to do that older people also need to dare to acknowledge the role they too play in keeping that alive. The strength to love ourselves as we are is essential if we are to resist the idea that we have to conform to externally constructed norms about who we should look like, sleep with, and aspire to become. This also holds for people with HIV, in terms of the stigmas they face around health and sexual orientation and ‘bad behaviour’, in addition to the stigma around ageing. Stigmas are structural problems – not personal problems – and they require collective political action.”
MORE FUN AT 88 Applewhite’s revolution against ageism began eight years ago. After a series of interviews with people in their eighties, she realised her own view of ageing was completely different from their reality. One woman told her that she was enjoying life much more at 88 than she had at 70. “That was a scenario I’d never taken into account before,” says Applewhite. “My perception of ageing had been: no longer being independent, developing dementia, having trouble with physical impairments and wasting away under a flowery duvet in a nursing home. All these people showed me that you don’t have to be afraid of growing old. Your personal growth doesn’t stop, not even if you have physical impairments or need to slow down a bit. You are never too old and it is never too late. Instead
of resisting the passage of time, they were fully conscious of it. They were not standing still but had become stronger and more effective in deciding what was important for them and what was not. “Time is to too valuable to deny; time must be cherished. The facts also support this idea: only a relatively small percentage of older people ever live in a nursing home and only a minority develop dementia. Even of those people who reach a very old age (over 85 years old), more than 50% are still capable of doing day-today things without help. And the idea that sex loses its importance after a certain age is a complete myth. The evidence for that includes a relatively high rate of STIs among people over 50.”
SEX In the US, nearly a quarter of all people with HIV are 50 or older, and their number is growing fast. In part that’s because HIV has become a chronic condition and people with HIV are living longer. Another reason is that people are now contracting HIV or other STIs at a later age. Here, too, ageism plays a role, according to Applewhite.
“Time is to too valuable to deny; time must be cherished”
“What’s really bad is that many doctors assume their older patients aren’t sexually active anymore. That is utter nonsense, of course. As if you can’t become aroused or no longer have any need for intimacy. Doctors fail to ask about their older patients’ sexual histories, let alone routinely screen them for STIs. Older people often have HIV/Aids for years without being aware of it, because they mistake symptoms like fatigue, weight loss, and confusion for normal age-related aches and pains. But also because doctors – like many older patients themselves – think of Aids as a young person’s disease.”
AGE PRIDE We all get older. Applewhite is convinced that the earlier we accept that, or even embrace it, the better. “Why on earth do we stop celebrating personal growth – the all-important ability to adapt to and learn from life – after a certain age? Because chronological age is such a lousy indicator of almost anything about someone. With my initiative I want to change the way people perceive ageing from a disease or a problem to be solved to a powerful, natural and beautiful process. Ageing is an accomplishment of which we should be proud, instead of feeling ashamed. ‘Age pride!’”
THIS CHAIR ROCKS In This Chair Rocks: A Manifesto Against Ageism, Ashton Applewhite calls for the creation of a world of age equality – one in which discrimination on the basis of age is as unacceptable as any other kind. Her manifesto should change for good the way we view the rest of our lives. ISBN number 978-0-9969347-0-1
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HEALTH Written by Joep Heldoorn Translated by Tom Johnston Photography by Jeannette Cornelisse Illustrated by Henk Hageman
CHRONIC PAIN Experiencing pain is part of life, but it’s not always easy to live with chronic pain. As someone who suffers from chronic pain himself, Joep Heldoorn (46) was curious about how others manage to deal with their pain.
LIKE MANY OTHERS with HIV, I suffer from neuropathy – pain caused by damage to nerves. Other people have problems with chronic muscle pain, pain from osteoporosis, or pain that keeps coming back but without there being any demonstrable cause. The group of people who suffer from chronic pain is very diverse, but what most of us have in common is a diminished quality of life – along with bulging medical files, compiled by innumerable doctors, specialists and other practitioners.
ALARM Without pain we would neglect wounds or leave infections untreated. Acute pain is a sort of internal alarm that sounds the moment we face immediate danger and goes silent again as soon as
An alarm that never stops sounding
the wound has been bandaged or the infection treated. Acute pain will go away, whether or not you take any paracetamol for it.
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“Chronic pain is not something you can get rid of with simple painkillers”
But for people with chronic pain, the alarm never stops sounding, even if there’s no immediate danger to speak of. Chronic pain is not something you can get rid of with simple painkillers, and in contrast to acute pain, it has no real function. The permanent, burning pain in my feet, my cramps and those recurring pain attacks are all as useless as phantom pain, and partly for that very reason they can be hard to live with.
Just two days later, I received thorough instructions for using the little TENS unit to stimulate my sensory nerves, as needed. Such stimulation, through the skin, is supposed to close the so-called pain gates in the spinal cord. That way, the brain will stop receiving pain signals, but will continue to produce endorphins, a hormone that brings pain relief. They said I’d notice the effect quickly. “Go ahead and give it a try at home.”
Chronic pain is often accompanied by sleeping problems and depression, which only worsen the pain. To complicate matters, both pain and depression are to some extent controlled by the same brain processes. Add to that the underlying medical conditions and any side effects from all the medication and you will see the complexity of chronic pain in its full glory. It’s no surprise that doctors consider chronic pain hard to treat. Pain medication, nerve blocks and psychological treatments are all available through different medical specialists. But the issues involved are complex and interrelated, so the trick is to coordinate the various different forms of treatment. This works best if the various practitioners work together in close consultation. It was with that goal that people started setting up pain clinics in the Netherlands.
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Last year my doctor referred me to a pain clinic on the assumption that “it can’t hurt to try”. Unfortunately that turned out not to be the case. Not even 20 minutes into my first appointment I was offered a comprehensive treatment plan. The words “TENS” [transcutaneous electrical nerve stimulation – ed.], “new medication” and “nerve blocks” whizzed past my ears. “We like to move quickly, ” the pain specialist told me.
“My pain specialist seemed to have no intention of contacting my neurologist” It’s true, I didn’t have to wait long to notice the effect. The following morning my right foot was red and painfully
swollen. A bit of poking around on Google taught me that with my particular pattern of symptoms, it is better to avoid TENS altogether or least to be very cautious in applying it. I began to wonder what my treatment plan was actually based on. A week or so later, my concerns were simply brushed aside. My pain specialist seemed to have no intention of contacting my neurologist. “It’s just a matter of trying it out. It’s hard for us to know in advance if something is going to work.” I wasn’t surprised in the least: I figured it would be hard to treat without a thorough diagnosis and consultation. I decided to forget about the pain clinic and the nerve blocks. I’m not going to let anyone poke around in my spine to block a nerve – especially if they don’t have a thorough treatment plan.
PAIN MANAGEMENT I’m a big fan of the holistic treatment of chronic pain offered in highly specialised pain clinics. But no matter how crucial it might be to coordinate treatment like this, even the doctors in Dutch pain clinics won’t always automatically consult with the other doctors who are treating you. That means a potential loss of valuable information that could be of importance for your treatment. In any case they should consider not just pain relief, but also pain management. Learning to live with pain will sometimes require extra training or psychotherapy.
Personally, I’m no longer game for any new experiments. What my referrer and I hadn’t fully considered was that a failed treatment can actually cause real damage. I was seriously knocked out of balance for a while. What has helped me recently is being mindful of what I am still capable of doing. Medicinal marijuana and a mountain of pills have served me well in that regard. Even now, though,
the pain is considerable, and I do have lots of problems with side effects. But at least I’ve managed to reach something of a psychological balance. For me it’s vital that I don’t allow that balance to be disturbed again. I simply can’t afford to have another treatment fail or deal with another medical idiot. And just the fact that I know that now – thanks to the pain clinic – is already a big plus.
Jutta (61), chronic pain since 2004 “You could say I’ve had a turbulent life. Once I’d managed to kick my heroin habit 30 years ago, I was told I had HIV. Since then I’ve had four slipped discs and two operations, and those have resulted in twelve years of chronic pain in my back and legs. As a result of my HIV, I also suffer from osteoporosis and neuralgia
in my toes. I’ve had a heart condition since 2010, and not long ago I actually had a heart attack. Walking more than 100 metres is too far for me these days. And all those damned cobblestones in Amsterdam make it too easy for me to tumble over, scoot mobile and all. At the moment I’m on a regime of tramadol, diazepam and amitriptyline. I’d prefer to use morphine plasters, but I’m not allowed to because I’ve just had a heart attack. Pain specialists can’t do any-
thing for me. Due to my HIV I’m dependent on Norvir, which can’t be combined with certain pain killers. I’m now at a point where I’ve had enough of it all. I get exhausted and depressed from so much pain. What does help me is continuing to do fun things with my girlfriends and not just giving up. Physical therapy also helps, but I’d rather use what little energy I still have doing fun things.”
“I get exhausted and depressed from so much pain”
Lambert (60), chronic pain since 1978 “Ever since a traffic accident I had some 35 years ago, the cartilage in my left knee has kept shrinking. As a result I’ve had more and more pain on a day-to-day basis. At first I hoped it would get better, but it just got worse. I also have problems with neuralgia as a result of my HIV or the medication I take
“At a certain point you get used to the pain”
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HEALTH Alexander technique makes you aware of your particular way of reacting and teaches you to change that. It’s just a technique; it’s not any kind of therapy.
for that. But the neuralgia might also be caused by the pain in my knee. “The increasing pain I experience has meant that I have been doing less and less in recent years. And that, in turn, has meant that my muscles are only getting weaker. By now I’ve learned to just live with it. And anyway, at a certain point you get used to the pain. Even so, it restricts me every day. I have always enjoyed working for the train service, but now I’m waiting for a disability assessment. The pain also limits me in my private life, even if it’s only when I’m going out or during a party. I always need to be able to sit down and that’s often not an option. “What I’ve found helpful is the treatment I get from a pain specialist. I’ve chosen not to have a nerve block, because I want to have something left to try if the pain becomes unbearable. The pills I’ve been prescribed have been very helpful. They help me sleep better and they help my muscles to relax better. What I also find very helpful is TENS. I can operate the unit myself and basically use it whenever I need to.”
“Many people with chronic pain start thinking of it as a catastrophe: they immediately assume the worst and are afraid of the future. I don’t want to fall into that trap. If I’m worried or sad, I tend to withdraw into myself
“The pain can make things like sex a bit tricky” Tom (63), chronic pain for half a century “As a child I already had a lot of pain due to neck and back problems. I tried everything but found nothing that helped until I discovered the Alexander technique. Your body is constantly reacting to external stimulation. The way people wince when they are startled is just one example of that. The
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have a good relationship, but the pain can make things like sex a bit tricky sometimes – unless I lie on my back, but that’s not exactly my favourite position.”
– emotionally, but also physically. The pain I experience from that is a signal that I need to be mindful of how I react and move. “Thanks to the Alexander technique I can stay standing up straight, which means I’m not turning into a modern-day Quasimodo. But to be honest, I have to admit that my pain does have an influence on my life – and on that of my partner. Fortunately we
Curious to know more about the Alexander technique? Check out Tom’s website: tomsterdam.com
COLUMN Written by Erwin Olaf Translated by Allen Gibson Photography by Erwin Olaf
ed a young Roel Coutinho [a leading figure in the subsequent fight against the epidemic – ed.]. After the meeting I brought several pages of mimeographed handouts with information home to Teun, my boyfriend at the time. He looked at me in shock and said: “I think we should be a bit more careful from now on.”
the virus at that time, wasn’t enough to save him and he chose to end his own life with dignity. I cried many thousands of tears for him. And he wasn’t the last: in the years that followed, many other beloved and remarkable men went the same way. Aids and fate struck indiscriminately, wreaking havoc.
You know, I’m the kind of gay man who’s most interested in what a guy’s got in front. An angular masculine torso and what’s hanging beneath it are much more enticing to me than those softer fleshy curves at the back. So it wasn’t hard for me to avoid doing the things that later turned out to be essential to pass on the virus.
Fortunately, drugs were eventually discovered that suppressed the virus. They were a gift from the gods for many of those dear to me. Thanks to the efforts of scientists, fundraisers and volunteers, the drugs are constantly getting better. Nevertheless, the immediate impact of an HIV diagnosis can still be enormous. Once the doctor breaks that dreadful news, it can undermine or even destroy a person’s self-esteem. There are lots and lots of tears to be cried before you can start to put the pieces back together again.
The impact of this new disease became visible very quickly. A few highprofile figures suddenly disappeared from the local scene. Like that fellow
Eye witness BACK IN 1981, when I was an unemployed photojournalist, I contacted Sek, the monthly magazine of the Dutch LGBT rights organisation COC, to offer my services as a volunteer. Soon afterwards they asked me to take photos of a meeting in the attic of their
headquarters. It turned out to be the very first meeting held in the Netherlands about a devastating new disease, which was being referred to as “gay cancer”.
who always wore laundry pegs in his hair. Or that big towering queen with the fabulous sense of humour and the world-beating body.
I listened with bated breath to each word uttered by the speakers, who includ-
One of my closest friends fell seriously ill. AZT, the “nuclear weapon” against
Needless to say, I’m glad that this deadly, destructive disease has been brought under control. Nowadays, HIV is no longer the demon that it once was. And secretly I’m very proud of the gay community. Despite deep divisions, we’ve stood shoulder to shoulder over the past few decades to fight this terrible disease. I hope that we’ll continue to stand shoulder to shoulder to fight the stigma that men and women living in some parts of our society still face. hello gorgeous 49
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DOUBLE INTERVIEW Written by Marleen Swenne Translated by Allen Gibson Photography by Henri Blommers
Wilford and André
Loving, warm and caring Wilford and André are not only brothers, but best friends too. Both are gay and were adopted from the same children’s home in Colombia. But one of them is HIV positive and the other is not.
IT’S A WARM JULY afternoon in The Hague. André Sloterwijk (32) has come here straight from work, but his brother Wilford (36) is still stuck in traffic. The coffee shop where we’d arranged to meet closes at five o’clock, just as we arrive, so André and I wait outside for Wilford. But since he didn’t say where the traffic jam was or how long he would be, we decide to start without him. I begin by asking him for some background information. Wasn’t it strange growing up in Friesland? Did the pair really feel at home there? Clearly my question betrays a typical lack of understanding, because André replies: “Of course we did. We had a great childhood. We felt welcome and safe, and Friesland is a great province to grow up in. The two of us still talk to each other in the local language, Frisian, for example when we chat on the phone,” he laughs. “That draws strange looks from some people, because obviously we don’t look at all like we come from Friesland.”
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DOUBLE INTERVIEW brothers to their hearts unconditionally. Wilford was 14 months old when he was brought to the Netherlands. André followed three years later, at around four months old.
“Despite our mother’s illness, we had a warm and safe upbringing” Wilford: “Our mother had a chronic illness. She needed a kidney transplant, so my father donated one of his. That’s quite remarkable. We saw from close by how hard it can be when your body won’t function as it should. And how important it is to be loving, warm and caring to each other. That shaped us as people. Despite our mother’s illness, we had a warm and safe upbringing. In fact, we couldn’t have grown up in a better environment.”
André: “Wilford prepared the way for me. When our parents heard that I was gay too, the only thing that bothered them was that they wouldn’t have any grandchildren. Luckily I was able to tell them that gay men can have children now too. I had been planning to adopt. I was married for seven years and my husband and I had started the adoption procedure, but we ended up getting divorced a couple of years ago. Our parents are no longer around. They died in 2005 and 2006, one after the other, and much too young. My mother died from her illness and a year-and-a-half later my father was killed in a car crash.”
CHILDREN’S HOME André: “In 2012 we travelled to Colombia to visit the children’s home that we’d come from. We spoke to people there and were offered the chance to look in our files. Wilford looked in his and is planning to track down his biological mother. I don’t feel the need to do that. I’m happy to leave things as they are.”
GRANDCHILDREN Wilford was the first to come out. “I was 18 or 19 years old. Our parents were both deeply religious, but my father said that what mattered most was my happiness. He didn’t find it all that difficult. At the start, my mother had difficulty accepting that I was gay on account of her religious beliefs. But once she had accepted it, she no longer had any problems with it.” 52 hello gorgeous
Wilford: “ My biological mother was 15 years old when she gave birth to me. That was much too young to bring up a child, certainly in her circumstances. She gave me up and that was the best thing she could have done. I’d like to tell her that, to thank her, because I think a mother in that situation must always wonder what has become of her child. Well, things couldn’t have turned out better for me.
She should know that. Unfortunately, it’s proving to be very difficult to trace her, but I hope that I succeed.”
A FRESH START Wilford: “I’ve been HIV positive since June 2011 and my husband is positive too. I get tested for STIs every three months – I think I owe that to myself and to others. And you need to do that if you have an open relationship. I knew that you could generally live a normal life if you were positive. It didn’t turn my world upside down, but it did change me. HIV gave me the chance to make a fresh start. It made me face reality. And I embarked on a new life. I had been working for a bank but never really felt at home there. Now I’m retraining to become an English teacher.”
PUTTING THINGS IN PERSPECTIVE Wilford: “My mother’s illness and my parents’ death taught me a lot about putting things in perspective. One twist of fate and it can all be over.” André: “At first my father’s car accident frightened me because it showed that life can be over, just like that. But it also taught me that sometimes you just have to get on with things and let life take its course. I had to make a fresh start too. After my divorce I moved from Friesland to
“Wilford prepared the way for me”
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DOUBLE INTERVIEW Amsterdam. I left everything behind me. Now I’m starting to build up a new life for myself.”
SOMETHING BAD Wilford: “By the time I found out I was HIV positive, my parents were no longer with us. At the time of my coming out, my mother said she was afraid of ‘something bad’ happening. I think she said it because she wanted to protect us from what to her was unknown. We never spoke specifically about HIV. I would have liked to have told my parents about my HIV, especially since my mother was always sick. Since we were always open and honest about things at home, it wouldn’t have felt right to withhold something like that. But they’re no longer alive, so it’s easy to say that now.”
FINDING OUT MORE André: “Unlike Wilford, I knew virtually nothing about HIV. That’s actually quite odd. I’m gay, but my circle of friends is very different. It includes lots of straight people and lots of people who don’t know much about HIV. They know just as little as I did when Wilford told me he was positive. So I set out to find out more about the subject and took in the information little by little – to keep from getting overwhelmed. By talking to him I also learned that ‘How did you get it?’ really isn’t the issue. It’s better to ask: ‘How are you dealing with it now?’” 54 hello gorgeous
Wilford: “If I’m asked how I contracted HIV, I don’t answer. But I’ll answer any other questions. If there’s something that somebody doesn’t know, I’d rather that they ask me than get all hung up about it.”
CHILLED OUT Wilford: “In 2011 I had quit my job and made all the arrangements to travel the world, when I found out that I was HIV positive. At first I didn’t want to tell people because I was scared that they would worry. Obviously I told my husband and a couple of good friends. They were quite chilled out about it. During my trip I found a sense of calm. It did a lot for me, helping me to understand things and reduce my stress levels.
“I knew far too little about the subject and I’ve become more cautious now” “I didn’t tell André until I returned to the Netherlands in 2013. It was shortly before my wedding, at which he was a witness and the only member of my family present. It didn’t feel right to keep him in the dark, because we are open and honest with each other. He was worried about me and probably unsettled. But
I wanted to ease his concerns by talking to him. And we still talk about it now. André is a pretty modern guy, so he’s able to put it all in perspective.” André: “We don’t treat the fact that Wilford has HIV as something extraordinary. It’s a condition you can easily live with. I knew far too little about the subject and I’ve become more cautious now. That’s why I wanted to take part in this interview.” Wilford: “I wanted to do this interview because I want to break down the taboo that surrounds HIV. And of course to make myself feel better. Keeping a secret is stressful and I don’t want that stress anymore.”
“HIV didn’t turn my world upside down, but it did change me”
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NIET OVERDRAAGBAAR BETEKENT
NIET DETECTEERBAAR 56 hello gorgeous
JOKE STRIPS Text by Joke van Soest Photography by Henri Blommers
Just like my sweetie darling Plato, I see real value in the unified ideal of goodness, beauty and truth. Especially now that I’m getting older.
Staying hydrated is vital to me. I only hydrate organically and I snort fair trade.
To be gorgeous on the outside, you've got to be gorgeous on the inside. True beauty comes from within.
Being good to yourself also means getting plenty of sleep. So I sleep around a lot, just like Mata Hari. That’s how I know that truth is fleeting.
And otherwise there’s always Photoshop!
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SITES & SERVICES
here I am hello gorgeous is produced by a group of volunteers who live with HIV or are interested in the subject in some other way. You can support us by taking out a subscription at: www.hellogorgeous. nl/abonnement. On this Dutch-language site you can also find news and information about a variety of activities for people with HIV. We have a fansite on Facebook: facebook.com/ hellogorgeousmagazine You can also follow us on Twitter: @hellogorgeousnl and Instagram: @hellogorgeous_magazine
for people with HIV The Dutch HIV Association (HVN) promotes the interests of people with HIV in the Netherlands. At www.hivnet.org you can find current information in Dutch about living with HIV, blogs written by both men and women, and an active forum.
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for questions Do you have questions about HIV, are you wondering about activities taking place near you or would you like to talk to someone? You can reach the HVN â€œServicepuntâ€? by telephone at (020) 689 2577 on Mondays, Tuesdays and Thursdays from 2pm to 10pm. You can also send an email: servicepunt@ hivnet.org. In Flanders, people with HIV who are looking for help, advice or someone to listen can call Sensoa Positief (078) 151 100 Monday through Thursday from 1pm to 4pm.
for gay men Are you looking for contact with other gay men who have HIV? Poz&Proud, the group within HVN for gay men, organises many activities where poz men can meet each other. For current information in Dutch about those activities and more, check out www.pozandproud.nl. Poz&Proud have a Facebook group with nearly 500 members. They can
also be found on Twitter, where they post things in both Dutch and English: @pozandproud. You can also reach them by email: email@example.com
in English Are you interested in reading about international research and finding information about HIV? Have a look at www.aidsmap.com and www.thebody.com. There are various English-language magazines about living with HIV, including online titles such as www.poz.com, www.hivplusmag.com and www.positivefrontiers.com. At www.patientslikeme. org, patients can meet each other online and share their experiences and knowledge. The site is a meeting place for patients with all kinds of conditions, so for instance if you have HIV, you can make contact with other people with HIV. You can also record information about your health (e.g. CD4-cell count) and compare yours with that of others.
NL/HIV/010/17, februari 2017
FIGHTING HIV TOGETHER
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hello Gorgeous is a glossy magazine about living with HIV, produced by people with HIV and others directly involved with them. Everyone who...
Published on May 30, 2017
hello Gorgeous is a glossy magazine about living with HIV, produced by people with HIV and others directly involved with them. Everyone who...