Friday, December 1st, 2017
Bakita is an activist and consultant in the HIV sector and the European representative on Y+ Board (the youth arm of the Global Network of People Living with HIV).
Outside of the HIV sector, Bakita is a personal development trainer and poet – performing under the name BakitaKK. She is currently studying a masters in anthropology and community development.
I am not shy in making it known that I don’t think the UNAIDS 90-90-90 target is enough. Under this target the depression that might be triggered by ARTs or the self-stigma preventing a person with HIV believing they are deserving of a loving respectful relationship is not factored in. Under the current target diagnosed and undetectable is enough.
I would like us to move towards a target that includes quality of life. We need to think beyond pills and viral loads and towards rehumanising people living with HIV.
HIV is a health inequality and it is no surprise that certain groups are more likely to be impacted than others. These groups are also more likely to face at least one ‘ism’, ‘isms’ that limit our humanity and dehumanise us.
Equally, people living with HIV, researchers, those who lead peer-led support and charities in the sector do not exist in a vacuum. We are exposed to the same messages, systems and structures; unless we’re vigilant and make a conscious effort we run the risk of continuing to reflect the same discrimination in our advocacy.
Sometimes in our equality efforts and campaigns, we run the risk of fighting to have the same powers as those groups we consider oppressive, rather than challenging or changing the power structures. When our campaigns turn into something like that, they only end up serving those who look like us and experience life in a similar way that we do.
So if your advocacy dismisses the experiences of HIV positive people who were born in the 90s and noughties because they don’t seem as painful as the experiences as those who were adults in the 80s and 90s…
If your HIV advocacy involves young people, migrants and trans people only in conversations about their experiences as being young, migrants and trans people…
If your HIV advocacy ignores the unique journey of being born and growing up with HIV…
If your HIV advocacy leaves BAME women as an afterthought in research, representation and prevention…
If your HIV advocacy mutes the realities of AIDS-defining illnesses, because they’re not an ‘issue’ in your country…
If your HIV advocacy excludes HIV positive people who are detectable from discussions about safe and pleasurable sex…
Then I’m afraid there are a growing number of people who are just not going to put up with it. None of us should.
What may be referred to as “in-fighting” in activism, I would argue (instead) is a growing number of groups gaining a better understanding of how they are discriminated against structurally and seeing that reflected in our advocacy.
It’s time for introspection and to examine whether our HIV advocacy is actually advocacy for all HIV positive people, or for those who have similar lived experiences to ours. Let’s not sacrifice groups that are already ‘othered’ in general society.
It’s a simple idea, but the process won’t be so. Recognising others’ humanity will involve us diagnosing and unlearning the ‘isms’ we carry. Recognising our own, reclaiming our humanity will require us to challenge our internal voices that have dubbed us underserving for far too long.
I am hopeful, but it won’t be light work. We need to be in this together.
Monday, September 11th, 2017
Silvia teaches Yoga at Positively UK every Monday from 6 to 7:30 pm. In this blog, she recalls how she started practising yoga, and how yoga has benefited her physical and mental health:
When I was diagnosed with HIV, over 20 years ago, I went through a profound trauma. It was terrifying. I was physically well, but I knew that HIV was inside me. It made me feel like my body was hiding a terrible enemy. When I started on the first gruelling regimes of Anti Retro Viral (ARV) medication, I also felt quite toxic, as I had so many side effects. Luckily the medication has vastly improved.
HIV had not only invaded me at a physical level, but also mentally. I had struggled with low self-esteem and depression, through my teens and twenties. The diagnosis exasperated those problems and I went though some really dark times. I initially experienced having HIV as a confirmation of all my worst thoughts about myself. I felt, worthless, damaged, tainted.
Self-Stigma was one of the first and most painful symptoms of HIV.
Somehow one weekend in 2000, I stumbled into a local Ashtanga Yoga class, in a rundown room at the Brockwell Lido, in South London. The room seemed to breathe, and sweat, as the practitioners moved from posture to posture. The yoga teachers, two black women, Jennifer and Sabel, had supple and toned bodies. Even when they didn’t move, there was an energy about them like two beautiful wild leopards that are about to spring and run. Their eyes sparkled, as they gave instructions, and supported students into postures. I was hooked, even as I panted and sweated and struggled through the positions. I was stiff, breathless, and very weak!
Through yoga I rediscovered the joy of being in my skin, flesh and bones. As I started to go to yoga classes more frequently, something awoke within me. Pure happiness of being alive. Lifting my arms, breathing: I felt all the cells in my body rejoicing.
Almost immediately yoga helped me re-connect to something within me which is strong, happy, stable and compassionate.
Soon I started practicing yoga first thing in the morning, every day, before going to work, as it helped me feeling well, and focussed.
Through years of practice my body and mind have drastically changed. I am 51, I have lived with HIV and Hepatitis C for over two decades. I have been through years and years of powerful cocktails of drugs to keep HIV under control, and I am still often surprised that I feel stronger, healthier, and more confident in my body now, than I ever had in my twenties or thirties.
Mentally I have also changed profoundly, I just don’t get caught up in my own thoughts the way I used to. I also look at my HIV diagnosis in a different way. I can see now that HIV was my first yoga teacher. It made me face my mortality, what in Yoga we call ‘impermanence’. Realising that ultimately I had no control, I could die any moment, made me value the life I have. It made me truly realise that we really only have the present moment. The Yoga Sutra of Patanjali, one of the most important philosophical text in yoga, starts with the word Now. ‘Now, in this moment, we start the instruction of Yoga’ – atha yoga-anuśāsanam.
HIV woke me up, and made me pay attention to my life, it made me realise I cannot take what I have for granted. Each and every moment is precious, and I am grateful to be alive.
Because of the huge benefit yoga practice has offered to my mental and physical health, since 2015 I have started teaching a community class for people living with HIV at Positively UK. Yoga is very expensive, and it can also be intimidating going to a yoga class if you have never done it, or if you have lost your confidence after an HIV diagnosis.
Through this class I want to share, in a safe peer space, the transformative experience of yoga. The class is free for people with HIV and everyone is welcome. No previous experience of yoga needed. The class is every Monday from 6pm to 7:30pm, at Positively UK, 345 City Road, London EC1V 1LR.
You can just drop in and try! If you have any questions about yoga and participating, please email firstname.lastname@example.org
I have been practicing yoga since 2000, with several teachers, mainly in the Astanga yoga tradition. In 2007 I have started practicing under the guidance of Hamish Hendry, one of the few teachers certified by by Guruji – Sri K. Pattabhi Jois – in Mysore since 2001. Hamish has supported and encouraged me to teach and share yoga with others.
In 2016 I completed the 200 hour Teacher Intensive with Richard Freeman and Mary Taylor – senior Ashtanga yoga teacher, with over 40 years of experience, in Boulder Colorado.
Tuesday, May 16th, 2017
Join us in challenging local candidates to pledge their support for people living with and affected by HIV. The general election is a crucial opportunity to raise the profile of HIV; please add your voice to our campaign.
We have come a long way since the 1980s. While stigma and discrimination remain, HIV is now a long term condition and individuals are living with HIV into old age. HIV affects individuals of all ages with 95% of people living with HIV of working age. HIV treatment in the UK is excellent, but not everyone living with HIV is doing well. The number of people diagnosed with HIV each year remains high and far too many people are diagnosed late. Services which help people living with HIV manage their condition are facing continued funding cuts.
We have come so far. We cannot stop now.
We are calling on the next Government to:
*The general election is electing MPs to the House of Commons, from across the UK. The House of Commons legislates for health and social care, and education, in England only. The devolved Governments of Scotland, Wales and Northern Ireland legislate in these areas.
It’s time to pile on the pressure; will your local candidates stand with people affected by HIV?
There are some easy ways you can help put HIV on the agenda in this election.
Don’t forget to let us know how your local candidates responded. Email HIVactivist.email@example.com
Thursday, November 3rd, 2016
For the first time in 20 years, the UK AIDS Memorial Quilt will be on display to the public at St Paul’s Cathedral, and then at community venues across London, to commemorate the lives of those lost to the AIDS epidemic.
Positively UK is proud to be part of the coalition of charities that have worked to display this irreplaceable piece of international social history.
Hundreds of individuals made quilt panels in memory of loved ones who had died from AIDS in the 1980s and 1990s, inspired by a global project that started in America.
The UK quilt panels will be on display at the Cathedral on 23 November, ahead of the AIDS Quilt Trail which takes place across London on the weekend of 3 and 4 December, where people can see the quilts for free at a range of community venues.
Alongside George House Trust, Terrence Higgins Trust, Positive East, The Food Chain, and Sahir House, with support from Elton John AIDS Foundation and Gilead, we hope the exhibitions will help remember those lost, raise awareness of HIV to younger generations and help find a permanent home for the UK quilt to ensure its preservation.
The Quilts, on display to coincide with World AIDS Day, reminds us how far the UK has come in the fight against HIV.
HIV no longer stops those living with the virus leading long and healthy lives – but there is still much to be done to tackle stigma, stop transmission and diagnose the 1 in 6 who are unaware they have the virus.
To get involved on social media, use the hashtag #AIDSQuiltUK
“Collectively, the quilts are part of the largest piece of community art in the world – which shows just how important they are to our social history, and how special this event is.
“Thousands of people died from AIDS here in the UK at the start of the epidemic, and displaying this quilt coming up to World AIDS Day is a way to remember them and to reflect on how far we have come since the 1980s in the fight against HIV, thanks to incredible medical advances.
“I’m delighted to support the fantastic work the coalition of charities is doing to preserve this intensely moving piece of art and encourage everyone to witness this important moment in history.”
“The Aids epidemic and the appalling number of lives taken by it was all too often portrayed in the media as being about a faceless mass of unknown people.
“In truth, of course, it was an all too large patchwork of individual stories; of real people with names and lives, with loved ones and families and careers and talents never quite allowed to reach fruition. How better to represent that than through the Aids quilt, which gives individuality back to so many people who risked becoming mere statistics?
“It is both work of art and a vital social document, and I wholeheartedly give my support to the coalition of charities and it’s ceaseless work to make sure the quilt finds the home it so richly deserves.”
Thursday, June 23rd, 2016
The national HIV support charity have chosen this focus as public awareness of the modern face of HIV has failed to catch up with the rapid developments in HIV medication over recent years. “Many people are unaware of these advances, unaware of the fact that so many of us living with HIV now have levels of the virus that are so low they are considered ‘undetectable’ and that because of this we are unable to pass the virus on to others” says Jim Fielder of Positively UK. “Many of those who seek support from us after a recent diagnosis, not only feel better physically but feel so much better in themselves, mentally, when they become undetectable.“
The charity believes raising awareness about undetectability and the effectiveness of modern HIV treatments has a huge role to play in reducing the fear of HIV, encouraging more people to get tested and reducing transmission rates.
“Of course, there are some of us for a variety of reasons for whom it is difficult or impossible to reach an undetectable viral load. Scientists are continually working to better understand why this is the case. Positively UK will continue to challenge the fear and stigma that can affect all people living with HIV and continue to make that despite the excellent medications available, people still need support in managing HIV long-term.”
Friday, March 18th, 2016
Stop HIV Cuts is a national campaign which aims to convince local and national government of the importance of HIV support services, and the need to commission them effectively and fund them adequately.
We are joined by a group of HIV organisations, service providers and community groups committed to ensuring the needs of people with HIV across the UK are comprehensively met and that the best possible results are achieved for physical health, mental health and social inclusion. We all believe that it is essential that HIV support services remain in place and are properly funded.
Nowhere in the country should be without access to high quality HIV support services for those who need them. This campaign in not arguing in any local area for any particular contract or any particular provider. It is arguing for a set of services and the vitally important outcomes they have been demonstrated to achieve.
Public Heath England’s Positive Voices survey found that over a third of people with HIV accessed HIV support services over a 12 month period. With over 100,000 people living with HIV in the UK, HIV support services are needed now more than ever.
HIV support services, often provided by voluntary sector organisations, provide much needed care for people with HIV around, for example, coping with a new HIV diagnosis, stigma and disclosure, safer sex, adherence to HIV treatment, mental health, social isolation, and wider social needs. They prevent serious ill-health, onward HIV transmission and severe social care need, so saving public money in the long term. Funding HIV support services should not be at the expense of HIV prevention and HIV testing. HIV support, HIV prevention, HIV testing all need adequate funding if we are to respond effectively to this serious epidemic.
Yet 2015 saw the start of a worrying trend of local authorities across the country totally defunding HIV support services. In Oxfordshire, Bromley, Norfolk, Portsmouth, Slough, Bracknell Forest and Bexley, the local councils are set to scrap this essential provision. Other councils threaten to cut funding to the point where meaningful provision is impossible.
These funding cuts are short-sighted and ill-thought through as they will ultimately lead to extra pressures on health and social care as people with HIV fall into acute need and crisis, as well as significant costs to the NHS from an increase in onward HIV transmission.
We are calling on as many organisations and individuals as possible to get behind our campaign to Support People with HIV: Stop the Cuts.
Thursday, September 3rd, 2015
Women: Meet other women living with HIV and share experiences Inspire and be inspired: Learn about specific issues for women living with HIV and developing strategies to address them Support: Build a support network and learn how to find sources of support Empower: Know your rights, develop skills to be heard and influence decision making. Unleashing Positive Potential: Be yourself!
The workshop will include:
Previous WISE-UP+ attendee
Where: Luther King House, Manchester
When: 30th October to 1st November
To find out more contact us on:
020 7713 0444 | firstname.lastname@example.org
Travel, food and accommodation and some support for childcare will be provided.
Tuesday, July 21st, 2015
Am I doing it right?
How do I negotiate safer sex with my partner?
Will sex be the same after a diagnosis?
With the help of our special guests we will have a day filled with:
Saturday 19th September
11:00am – 5:30 pm
345 City Road, London EC1V 1LR
Monday, June 22nd, 2015
This Saturday, to promote awareness and show solidarity across everyone living with and affected by HIV, Positively UK will be marching at London LGBT Pride for the first time. The event will also mark the start of a new project supporting gay and bisexual men living with HIV in London.
For Jim Fielder, Positively UK’s new gay men’s support worker, this is his first Pride march and the first time he has been so public about his status since his diagnosis last year. ‘I believe it’s important to be open and to challenge some of the attitudes that still cause misery for many people living with HIV, including within the gay community’ says Jim. ‘I’ve been lucky. I had the confidence to get tested, get access to the latest medication and have a great support network around me. But this isn’t the case for everybody. In spite of the improvements in the treatment and care of HIV, a significant proportion of people living with HIV still report experiencing stigma and discrimination and this leads to poor physical and emotional health.’
The aim of Positively UK’s first Pride march is to show the face of HIV in 2015 and challenge the stigma people living with it still experience. One of these people is Steve who was diagnosed with HIV in 2014. Steve accesses support at Positively UK, but like many others wants to remain anonymous and won’t be joining in on Saturday. ‘Although I would love to be part of Pride, I will not be able to due to my social background. In my culture it is hardly acceptable to be gay, let alone to be gay and HIV+. I would be extremely worried and nervous that someone would see me marching on Pride day.’
‘We know that HIV stigma is a barrier for some people to get tested’ adds Jim ‘and as a quarter of people estimated to be living with HIV are unaware of their status, this is an ongoing problem. We may only be a small group marching on Saturday but we will be marching for all those people living in the shadows who still struggle to be more open about their HIV status and get access to the support they need.’
Positively UK will be marching under the theme of ‘We are Positive’ and encouraging people to tweet on the day using the hashtag #wearepositive. If you would like join them on the March please contact JFielder@positivelyuk.org or call 020 7713 0444
Thursday, April 9th, 2015