How to Tackle the Stigma of Living with HIV | Gareth Thomas | TED

My life is reflected in my tattoos,

and you're going to have to trust me when I say that I've got a lot of them.

My body art tells a story.

Now, my HIV tattoo is on one of my kneecaps,

which is the joint that,

through a career of playing professional rugby,

was shot to pieces,

but somehow managed to get me through one of the world's toughest Ironmen.

And also, more recently,

a half-marathon.

Now, I did these to show what living with HIV is like now,

and also to illustrate that HIV doesn't restrict what I'm capable of doing

physically or mentally.

The skull is dark, ghoulish, threatening.

It represents the imminent death that I felt awaited me

when I first had my diagnosis.

The wings underneath the skull of my tattoo

signify the freedom I felt when I finally found my voice.

It was almost like the dead man coming back to life.

The crown that adorns the skull's head

shows me as someone willing to lead from the front,

who wanted to take the campaign against discrimination and misinformation forward,

who wanted to celebrate and highlight people's truth,

never asking people to do something I wouldn't.

Now, I haven't always been like this.

In 2019, I was blackmailed

by somebody who wanted money for their silence.

Also, in that year, a journalist went to my parents' house,

knocked on their door,

and asked my parents to make comment on my HIV status.

Now at this point, I hadn't even told my parents myself.

That forced me into telling the world about my HIV diagnosis

way before I was ready.

I was still reeling from the stigma of the diagnosis.

Now stigma is when people are seen in a negative way

due to a certain characteristic,

such as race, disability, sexuality or health challenges.

And it ends up with them making a moral judgment about people,

and it affects the way they treat them.

Now, I have spent my entire adult life in the public eye.

I'm an ex-professional Rugby Union player,

I played 100 times for my country, Wales,

captained the British and Irish Lions.

I always felt like I had the crowds cheering me on from the grandstands.

Since then, I've presented and appeared on many TV shows.

I've had an amazing life.

I felt loved by those around me and by my country.

I was this strong, tough rugby player

who came from a simple working-class background

to be one of the very best at this sport.

I was married to a woman, but I was living a lie.

So in 2009,

when I became the first openly gay male professional Rugby Union player,

it was a defining moment for me,

for sport and for society.

And even though it felt like a breakthrough moment,

sadly, very few followed my path since.

I am now living with HIV.

It took me a long while to process it at first,

because I'd gone from a man who had won every trophy that he had ever dreamt of

to someone who, all of a sudden, was living a lie,

who was ashamed, embarrassed, isolated,

afraid I was going to die,

afraid to tell anyone,

afraid to tell my family,

afraid I was going to lose everything and everyone

that I'd worked so hard for and I loved so much.

I was afraid that from now on, I would be defined by a virus.

Now, I've felt the devastating impact of stigma and shame,

and that is why I am determined to change the way people perceive HIV

and other stigmatized conditions.

And here's why.

The stigma and shame that I felt was medically unfounded.

Science and medicine has come such a long way in the last 20 years,

especially around HIV,

that it should be celebrated way more than it is.

But people's attitudes lag way behind.

The fact is, I take one tablet a day.

Modern medicine prevents my HIV progressing into AIDS.

It suppresses the virus in my body,

which means it becomes undetectable,

which means I cannot transmit it to my husband.

And I live a normal, happy, healthy life.

I really do. Trust me, I have never been happier.

(Cheers and applause)

Now, in the 1980s,

HIV was positioned as a death sentence.

It was reported as "the gay plague."

And those myths and misunderstandings still exist today.

And levels of awareness of what it is to live with HIV

remain way too low.

Now I can tell you I still experience stigma today,

whether it's people moving away from me in a restaurant

or people not wanting to shake my hand.

Now people act like that out of a sense of fear,

out of a sense of wanting to keep themselves safe.

But what it does, it creates a sense of shame.

And that shame means more people acquire the virus

and fewer people get early treatment,

because most people think that HIV doesn't affect them,

that it only affects gay and bisexual men,

when globally, 54 percent of the people living with HIV are female.

And in England, in 2020,

for the first time in a decade,

there was more new cases of HIV among heterosexual people

than there were amongst gay and bisexual men.

The truth is anyone can get the virus,

and the only way to know your status is to get tested,

but stigma acts as a barrier to testing, so new cases continue.

In the US,

eight out of 10 new cases come from people who are undiagnosed

or who are not on medication.

Now UNAIDS has set a goal

that by 2030, they will end this epidemic,

but it's going to be really hard to reach

if stigma continues to act as a barrier against testing and seeking care.

Now, when I was pushed into a corner by the blackmailer and by the media,

I was going to come out fighting.

I wanted to take control of my life.

I wanted to know what it was like to feel free.

I wanted to know, and I had the right to be able to live again.

And I wanted anyone else who was in the same position as me

to have that right as well.

Now tackling stigma is an ongoing challenge.

It's going to take a collective effort from policymakers,

health care officials, advocacy organizations

and, more importantly, all of us in the general public.

Education is key.

The more people who know the facts, the more the truth spreads.

Even simple conversations between two people

can change minds.

Now we need to normalize talking about HIV

and other stigmatized conditions,

and I encourage you all to challenge any stigma you encounter,

whether that be mental health, race, disability, sexuality.

We also need to address legal inequality and discrimination.

Now I feel relatively lucky,

given the strides being made in this regard, living in the UK,

as I'm aware of people around the world, who are living with HIV,

that, through discrimination,

have limitations placed on what they can and cannot do,

or even on where they can and cannot live.

Now, recently, in the UK, changes have finally been made

that means that people living with HIV

can join the armed forces and be deployed,

or can train as commercial airline pilots.

Now these changes have only happened

thanks to the determination and advocacy of those involved --

people with a dogged determination

to create safe, stigma-free environments.

Stigma also exists in unexpected places, like within health care.

You know, we’d all expect health care professionals to know the facts,

but this isn't always the case,

especially outside of HIV specialists,

and this absolutely needs to change,

as this can have a devastating impact on people living with the virus,

discouraging them from accessing care.

Now --

I am very, very, very proud

to lead the Tackle HIV campaign.

And we focus on that first point,

education.

And along with our charity partners,

the Terrence Higgins Trust

and ViiV Healthcare,

which is an organization fully focused on eradicating HIV and AIDS,

we are using the power of science, advocacy and sport

to change people's attitudes.

We draw on the ability of sport to effect change,

the love of celebrity

and the compelling stories of those living with HIV

can bring to change people's behavior and understanding,

whether that be through media engagements,

a podcast with others who have experienced stigma,

or live, on-the-ground initiatives.

I am passionate,

passionate about demonstrating that HIV is not a barrier to anything,

whether that be through me running an Ironman,

a half-marathon

or just through my daily gym workouts.

Vecause when people can get beyond the fact

that HIV is no longer a death sentence,

and that on effective medication, it can become undetectable in your body,

which means it's untransmissible through sexual contact,

then people living with HIV

can live without fear of rejection or alienation.

And so the fight continues,

because in some countries around the world,

new cases of HIV are rising,

and in all of these countries, stigma continues to exist.

I guarantee you, one day, we'll reach our goal.

So when anyone encounters stigma,

regardless of what the source of that stigma is,

we can all play a part in combating it.

We all have a part to play.

When you see or hear any cases of stigmatization,

find the strength to challenge and correct it,

whether that be at home with your family,

out with your friends or even in the wider community.

Now, the wings underneath my tattoo ...

give me the strength to move beyond HIV stigma and HIV shame.

And trust me, all of you, please trust me --

if I can do it, then anyone can do it.

And then, and only then,

do we have a real chance of ending HIV forever.

So please,

please, please help me,

because together, we can tackle stigma.

Thank you so much.

(Cheers and applause)