HIV: the story behind the stigma | Paige Zhang | TEDxTerryTalks

This talk was given at a local TEDx event, produced independently of the TED Conferences.

Paige Zhang talks about HIV and stigma. Although HIV has only been around for 30 years, this stigma is heavily prominent and important to address and correct. Part of this process is to educate the public on the need to undergo routine HIV testing.

Paige has had experience working with the S.T.O.P. HIV/AIDS project and doing HIV outreach. Here, she has encountered a lot of misconceptions around HIV -- a lot of which is hurtful and disruptive to public health outreach. She hopes that her talk will not only explain origins and causes of stigma, but also inspire others to look past misconceptions as an important way of fighting the HIV epidemic.

So, let me tell you a story.

It's not a fiction as much as you and I
may sometimes hope it to be,

but HIV is a story that affects
33.4 million people around the world.

33.4 million people are HIV positive.

In BC, with a population
of 4.5 million people,

13,000 of us are HIV positive.

There are about 300 people here today,

and in BC, one in every
303 people is HIV positive.

I don't mean to stress
that the virus is so prevalent,

or that we should all start to panic
or be very concerned,

but I just mean to stress the impact
that HIV has on the human population.

And we can't simply think that we can
just gloss over the statistics,

and that we can just hear about it
on the world report

during the evening news broadcast.

But no, HIV affects people we know.

It could be your neighbors. It could be
the person sitting right beside you.

It could be me.

I work with the STOP HIV/AIDS Project,

which stands for "Seek and Treat
for Optimal Prevention of HIV/AIDS."

And it's a three-year pilot program
here in BC,

dedicated to providing access to medicines
in vulnerable populations

in the Downtown Eastside
and in Prince George.

I have a really neat job
where I get to be responsible

for the education outreach
surrounding rapid HIV testing clinics

right here at UBC.

And we had our first one just last week,
the rapid-testing clinic. (Laughter)

And the response was tremendous.

We had students who came up to testing
and students who talked to us,

and it was just so inspiring
to get so much good discussion going on,

about why talking about HIV
is so important.

But before I get into that, I'm going
to go back to the introduction,

and to how HIV started,

because in 1981,
a virus was first discovered

and two scientists,
Robert Gallo and Luc Montagnier,

both published
in the same issue of Science

that they had discovered a new retrovirus
that was prevalent

amongst the gay male community.

Now, 1981. That's only thirty years ago.

And in these meager thirty years,
HIV has really risen

to the forefront of public health.

And we hear about AIDS a lot.

As a science student -
I'm studying physiology -

I learn a lot about it
in my microbiology classes.

And I learned that HIV is a virus
that lives within our own cells,

and it turns our immune systems
against us.

And what it does
is that it spreads and replicates

until we're somehow defeated almost,
and then we get AIDS,

and that makes us susceptible
to other illnesses.

But AIDS does not equal death,
and HIV does not equal death.

When I first started my outreach training,
one of the first things we learned about

was the importance of language.

You may have noticed that already
in how I speak,

but I'm very careful
in how I talk about HIV,

because when language developed,
it developed along the lines of:

"Well, HIV is really unfortunate,
but I don't have it."

And that's why we might
be used to saying things

like "those people who have HIV,"

as if somehow suggesting that the fact
that we may have this disease

somehow makes us subhuman or different.

And I don't believe in this othering.

I feel like it's primitive
to separate people this way.

And instead, when I talk about HIV,

I like to express it as "those of us
who are HIV positive,"

because each and every one of us
has an HIV status.

And the story of HIV
is a collaborative one.

We sometimes think
that it's only about the narratives

of those who live with HIV.

But no, each and every one of us
contributes to this overall story,

and how we talk about HIV,
and how we react to HIV.

And it's not just those living with HIV.

But did you notice how I said that?

Once again, the language defines
how we think about HIV.

"Living with HIV."
"Living with AIDS."

We say things like, "She has the flu,"
or, "He has allergies,"

but with AIDS, it's almost
as if you're living, ball and chain,

to this virus that's with you
for the rest of your life.

And I don't think that's fair.

Let's talk about diabetes.

Diabetes is an illness.
There is no cure for diabetes.

Diabetics constantly monitor
their blood sugar levels.

Yet, I would say
that there's a lot less stigma

associated with going to the drugstore
and buying our blood sugar monitors

than there is being seen taking
our daily antiretroviral medications.

And what causes this difference
in how we perceive

these two very similar illnesses?

I've been doing outreach at UBC
for about 6 months now,

and I get asked some common questions
here by UBC students,

some of the smartest young people
in the world.

But they will ask me questions like,
"Can I get HIV from toilet seats?"

Or: "I don't need to get tested.
I'm not gay."

Or they will say things like: "Oh, I'm not
promiscuous, I don't need to use a condom.

I don't need to get tested.
Everything's going to be OK."

And I understand that sometimes
it's hard to talk about sensitive issues,

like HIV, like sex.

And I don't mean to insinuate
that UBC students

are not as smart as this establishment
repeatedly proves,

but that, instead, these are some
of the many misconceptions

that surround HIV.

It's really important to identify them
and to move past them,

because no, you cannot get HIV
from a toilet seat,

or holding hands, or kissing, or even
breathing the same air as somebody else.

And no, HIV is absolutely
not just a gay problem.

And no, HIV has no specific symptoms.

So, the only way to know for sure
is to get an HIV test.

And yes, if you are sexually active,

you should be getting a regular HIV test
yearly, or more often.

But one of the most common questions
I get asked, and often not directly,

is about what it's like to live with HIV.

And people are terrified of this thought,
they're terrified about that idea

that, one day, they're going
to walk into a clinic,

and sitting across from them will be
a nurse, a clinician, a doctor,

somebody that tells them that they are
preliminarily positive for HIV.

Can you imagine what it would be like
in that moment?

All these thoughts must be racing
through your head:

"What does this mean? What do I do?

Can I tell my parents?
Can I tell my friends? Should I tell them?

Am I going to die?"

And you know what, those are the questions
that I don't have the answers to,

but what I can do is go a bit deeper
into this story.

I have a friend. Let's call him Steve.
And Steve is HIV positive.

And I asked him once about that moment,
sitting in that empty room,

and finding out that he was HIV positive.

And I asked him, "What did you think?"

And Steve said:
"It was the scariest moment of my life."

And if you knew Steve
and how seriously he takes his words,

you would really feel the force of them.

But he continued, and he explained,
and he said:

"I was terrified. At that one moment,
I didn't know what to think.

I felt like I was two separate people:

one person, a dead person;

and one person was alive, but struggling.

And all I could think about
as this nurse was talking to me was:

'How do I tell my parents? How do I tell
my friends? How do I tell my partner?'"

But Steve did tell his parents,
and he did tell his friends,

and he did tell his partner.

And now, he tells others about how
he lives as an HIV-positive individual,

but he lives a full and healthy life,

and he explains how he's gone so far
past that initial moment,

infused with all of these misconceptions
and all of these fears.

And he explains that that moment
wasn't life-changing for him.

What was life-changing for him was
when Steve finally married his partner.

So, we're so used to this idea of HIV

being this terrible,
all-encompassing disease.

But I'm going to argue that while HIV
is life-changing, it is not life-defining.

HIV is a chronic, manageable illness.

And, can we just say that all together,
for full effect? (Laughter)

Yeah, let's do it!

Everybody in the room:
HIV is a chronic, manageable illness.

Paige Zhang: And wow,
that is so refreshing to hear,

because sometimes we hear the opposite,

and it has a really damaging effect
not only for those who live with HIV,

but for all of us;
it prevents us from getting tested,

it prevents us from finding the truth
behind HIV, and the real stories,

and the real experiences
of those who are HIV positive.

So, in 1985, antiretroviral medications
were discovered,

and they created a new sort of way
of dealing with HIV,

because what they do is they prevent
the virus from spreading within our bodies

and, while it's not a cure,
it's a huge step forward.

But even in a world where HIV
is so prevalent, and we have medication,

and we have so much support,
this idea that HIV is equal to death,

and that you are going to die
if you get HIV, that it's the worse thing

that could possibly happen,
and that you are subhuman if you get HIV,

how is it that this stigma
is so misunderstood?

Well, I'm going to have
to go back to the story again,

for before human immunodeficiency virus
was even called HIV, it was called GRID,

which stands for
"gay related immune deficiency."

And it was partly because HIV
was so prevalent amongst the MSM,

or "men who have sex with men" population,
when it first came into the public sphere,

but people so readily associated it
with the gay community,

and they did it because they were scared,

they were terrified of this new virus
that was spreading,

and they were terrified
about what it would mean to get HIV.

And so, they held it separate,
they associated it with certain people,

and they played the blame game,
and they would say things like,

"Well, you got HIV because you're gay."

Or they would say things like: "You got
HIV because you cheated on your husband."

And they would cope with it by saying:

"Well, me? I only have sex
with my husband, I'm completely loyal,

and nothing bad will ever happen.
I will not get HIV."

And they used it as a coping mechanism,

but it also distances ourselves
from the truth.

Then, in 1985, a serious dent
was put in this view,

and Rock Hudson,
a popular Hollywood actor at the time,

died from AIDS-related causes and it also
came out that he was homosexual.

And suddenly, this idea
that we were so separate from HIV,

and that we were so distant
suddenly shattered, because we're not.

HIV can affect anyone.

Other celebrities
have been affected by HIV/AIDS.

Freddie Mercury died
from AIDS-related causes,

as did Isaac Asimov,
although he contracted HIV

through a botched blood transfusion,

before more stringent laws
were put into place.

And one of the most prolific
HIV/AIDS activists is Magic Johnson.

And when he came out in 1991,
there was a huge uproar

about suddenly this American hero,
this basketball player,

one of the most popular Americans
at the time, being HIV positive.

And he retired.

But what gives me hope is that, in 1992,
he was asked, I mean demanded,

to go and play for the all-star team
where he led the west side to victory

and he was named the most valuable player.

How is it that HIV has only been around
for thirty years

and there's been so much stigma,
and so many misconceptions,

and so much truth that's been lost?

It has to do with fear:
fear of HIV meaning death,

fear of what it's like to live with HIV,

and it's also a fear
of what we can do to help it.

I know it's something that's frightened me
for a really long time.

I mean, HIV is a devastating disease.

You, I, we really feel for those
who have HIV,

but while it's easy to invoke compassion,
it's a lot harder to invoke action,

because 33.4 million people
are HIV positive.

What can I, as one person, do?

And we feel overwhelmed, and we feel
that it's up to the doctors, the nurses,

the clinicians, and the leading
scientists to do something.

But I'm here to tell you that we
can change the face of the illness,

and it's up to us;
each and every one of us can fight HIV.

And one of the most important ways
I think we can do this is to get tested.

Testing! Is it scary? Yes.
It could mean that we're HIV positive.

It could mean
that we would have to find out.

It could mean that we would have to think
about HIV and how it affects us.

But testing is so important,
because if you get tested,

it gets you on essential medications
earlier, it stops transmission,

and it breaks the stigma
about getting tested.

I once asked a nurse why she thought
it was so important to get HIV testing,

and she said, "Why not?"

And if you think about it,
it really is that simple.

I get my eyes checked every year;
I get my teeth cleaned every six months;

I do my laundry, often enough;

(Laughter)

and I get an HIV testing yearly.
It's as simple as that!

Just another part of my medical routine.

Because we should break past
this stigma behind testing,

and we should just go and do it,

because, well, the story of HIV
has been written by fear, stigma,

and terror for the past thirty years.

We can replace it with one
of understanding, compassion, and hope.

So go, get tested, and know your status,

because your status will not defeat you,
it will not destroy us,

and it will nor define us.

Thank you.

(Applause)