Standing at just 5 foot 6, diminutive, 22-year old London College of Fashion, UAL student, Jacob Alexander moved audiences to tears at this year’s TEDxUAL talk.
Stepping out on stage, in front of whirring cameras, he announced:
“I was diagnosed with HIV on my 22nd birthday. My mum was sat next to me when I received the call. I thought of all the people who don’t have support. How can we make the lives of those living with the virus better? HIV needs to make the headlines again.”
The Positive Project
Determined to Stop the Stigma, Jacob announced the launch of ‘The Positive Project’.
An App designed to build awareness around the causes and symptoms of HIV – The Positive Project provides HIV facts, health information and helps users locate the closest treatment centres to them. There they can connect with centres, ask questions anonymously and book appointments.
Users are also encouraged to show their support by purchasing a specially designed ‘Positive Project’ T-shirt, designed by Jacob, and upload a ‘selfie’ snap to the App. The aim is to inspire fellow users to share their own selfies, creating a sense of community and “spreading a little bit more of the right kind of positivity across the globe” says Jacob.
A percentage from each T-shirt sale go to the St Stephen’s Aids Trust – which helps fund research and support for those living with HIV, as well as leading sexual health clinics, 56 Dean Street & Dean Street Express.
“I hope my App can make people feel connected and feel a little safer having access to sexual health information provided in my App. I’ve designated a special section of the ‘Where To Get Checked’ feature to the Transgender community too. My aim was to target those people who have been at risk of turning to sex work to fund their transition and thereby expose themselves to the HIV virus – known to be higher with sex workers. Everyone deserves the right to access to information.”
Diagnosed on his birthday on 9 September 2015, Jacob has spent the last six months grappling with the truth of his diagnosis.
“It feels like a twisted joke. I proposed my final year London College of Fashion project on a Spring Summer collection designed to raise awareness and to de-stigmatise HIV. It was to be named after my own blood type, O+. I thought it was an important cause, but it was something that happened to other people. Little did I know that three months later, I would be diagnosed with the virus myself.”
Already a survivor, Jacob had thought he was done with battling his body. Born with Van der Woude syndrome – an extremely rare genetic disorder that causes mid-line defects in the body – Jacob has endured more than nine operations and procedures that have seen his entire face reconstructed. As a result of the surgeries, he has seven metal plates, 27 wire hooks and 14 screws in his face.
“I took a picture of my face every-day for three months because there was nothing for me to look at before my surgery. The doctors sent me in blind and so I asked them to take photographs of the transformation of my face so patients would know what to expect when they walked into the operating room.”
He bravely shared the photographs online and thousands of people began to follow his journey on social media. Songstress, Rita Ora got behind him and liked one of his photographs on Instagram, quickly amassing over 50,000 likes.
Intent on moving forward and forging a career as a menswear designer, Jacob has struggled with the onset of this new battle.
“My HIV symptoms came around eight weeks after my body contracted the virus. Then came hell. I could literally feel the virus spreading through my body. I developed rashes, sores, aching joints and ensured drenching night sweats for months. Even freckles fell off from my skin. I don’t feel like it’s my skin anymore or my hair or my body. In fact, I don’t feel like me anymore. In place has come a new-but-tainted me.
Since my diagnosis, I’ve struggled with depression and have felt my life unravel. I feel I have seen the true value of my worth as I have witnessed the stigma of HIV first-hand. My best friend rejected me, sharing jokes with his friends about my HIV status. I was shocked the day he bought his own fridge for his room, scared that I would “infect” his food. It showed just how deep the ignorance runs around HIV – you can’t transmit a live virus like HIV through touch.
But in a positive moment, my cousin Elizabeth hugged me and told me I was strong. ‘You can turn this curse into a blessing and help others,’ she told me. My parents and family and friends rallied around me and showed me unconditional support.
From the moment I came out when I was 12 years old, my parents have supported me. My mum was there with me when I received the call telling me I was HIV Positive and has been there, along with my Dad, through every hurdle. I don’t think I could have more amazing parents. When I told my boyfriend, Gary, he promised he would be there for me every step of the way and nine months later he stands proudly by my side. I’ve never been in love like this before. It was because of them that I knew I had to do something to help other people living with HIV.”
These days, Jacob is open about his diagnosis and talks freely about his condition. At the outward mention of HIV, he is greeted with onlooker’s stares and visible looks of discomfort.
“You can’t imagine the level of discrimination I have felt on daily basis,” he says. “People protect their children. There is a stigma to HIV and a fear that runs deep. Education and support is key. I wanted to use my passion for design to inspire people to show their support and know they are not alone. Just like we’ve changed our attitudes to gender and sexuality and mental health– it’s now time for people to get educated about HIV.
I want to invite everyone to join ranks in my #ALXNDRARMY to Stop the Stigma and support The Positive Project.”
JACOB ALXNDR’s debut collection O+ show and presentation will be on 9 June 2016 at the London College of Fashion Menswear takeover. Afterwards Jacob will be giving a talk about his menswear label and The Positive Project.