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May 25, 2018 24 mins

In the second part of our deep dive into feeling different, we sit down in the Question Booth with Atlanta artist and disability rights activist Barry Lee. 

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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
So I went to a store to just buy a lamp,
and when I went to the cash register, I greeted
the cashier asked how she was doing. I've never seen
the cashier before, and she kind of looked at me

and she said, can you explain your disfigurement? That's very Lee.
He's an artist and disability rights activist. He's our guests
in the Question both this week, but let's let him
finish his story about feeling different. I usually kind of
let those things slide in the past, but at that time,

I was feeling really tired of getting that response and
not feeling like I can own that situation and hopefully
teach somebody what was wrong with that. So I took
about five seconds to think and trying to be silent,
and I asked, excuse me. And when I asked excuse me,

that was sort of my way to maybe help this
person looking themselves and see why they asked that question
and if they felt that that was an actual appropriate question.
And so they then responded, well, you know, you're you're

not normal. Um, you're you don't look normal. And so
I explained to her, I said, well, I have this
syndrome that's very rare had caused me to have a
bunch of surgeries, and I just say to her, just
because I'm different from you doesn't mean I necessarily always

owe you're an explanation for that different. And I told
her I was like, honestly, and that was like pretty rude.
And she apologized and she said, I just wanted to know.
I was like, I understand that, I said, but I'm
also trying to live my life just like you are.

But I often do try to correct people and make
sure that they know that just because somebody looks different
doesn't necessarily mean it's our business to know why they
look different. The people in my life that are in
my life, we don't talk about my syndrome. We don't

talk about my looks, and you know, it just sort
of organically comes up in time and then how I
know them. It's never a thing where I go and
walk up to somebody and say, well, hey, I'm deaf
and I have had twenty surgeries as a kid. I
don't just have that as a line opener. And because

it's not something that I think defines me, it's just
an expression and an ass up. Mm hmmm mmmm. Welcome

to the Question Booth. I'm Dylan Fagan and I'm Kathleen Coullian.
The Question Booth is a place where strangers come in
and discuss life's big questions. We also talked to someone
who knows a lot about each week's subject to better
understand why people might feel a certain way. And this
week we're continuing our deep dive into the question when
was the last time you felt different? Last week we

heard all kinds of stories about feeling like an outsider.
This week we'll hear about ways that we can be
more understanding. Yes, So, as we mentioned at the top
of the show, we were recently joined in the Booth
by Barry Lee. Barry is dedicated to breaking down the
stigmas to exist around disability and sharing his story through art,
so let's listen in on the rest of our interview. Here,

Barry tells us about another time he felt different. Sometimes
people have approached me as doctors. People have claimed to
be experts of differences, and oh well, I don't remember.
When I was in high school and I was just graduating,
and I was preparing to go to college, and I

was in a pool with a friend and I had
my hearing aid off, and I was just enjoying my
time and this man, the stranger came up and said, hey,
I'm a doctor. What I was like, Jay? And he said,
you know, I know a really good mental retardation camp.
You should go too. And so I corrected him on

the syndrome that I did have, and I said, well,
I'm that's not really my plan. I'm going to college
in the fall. And just sat and the other and
because I didn't take his advice, he rolled his eyes
and walked away. He didn't say, well, good for you.
I'm sorry that I missed up your looks. But there

are people who, you know, claim to be doctors and
claimed to be helpful, and then when you know you
don't take their help, they then have their own ego
kind of get into the picture and just walk off.
Barry has made an illustration about this experience. It's from
a project called Home Is Where You Drown. In it,

a person stares at himself in a body of water.
He's looking down at his four arms while people surround
him in a circle and stare. It's obvious from the
expression of his face that he is feeling self conscious.
In the background, more figures pop their heads out from
behind the bushes. I understand people's intentions of helping thing.
We should listen first before we even help, because we

don't know what their lives are like. We don't know
if they naturally need that hop And as an artist,
I use a lot of my work as a way
of activism and in a way of talking about these scenarios.
But at the same time that that's maintaining ownership of that.
And I'm still selective about when I talk about that.

So when I may work about it, I talked about it,
but I don't wake up the next morning to have
breakfast with a friend and talk about it. That's completely
different things. So it again goes back to the that
is not a definition, It's only an asset. It's an expression.

When did you start to find that expression in art?
I started to recognize that expression when I was in
high school. Um, I started to really become interested in
what I had and my looks, and I was, you know, alone,
I was very lonely. I didn't have a lot of
friends in h school, and my way of communicating and

figuring out my syndrome and figuring out my relation with
it was drawing, and all of that, and you know,
I was able to go to a really great college
and because of that work, and I took a break
from making network and then now I've I've gone full
circle and making not work again and kind of talking

about being a young adult with the syndrome with creating
friends and dating and you know, these other sorts of
things where adults are approaching other adults with these questions.
And you know, I was doing with this as a
child with other children, but it's fascinating that adults end

up asking other adults these very personal questions that you know,
we may not necessarily oh that adult be answered. We'll
be right back with more from our interview with Barry
after this quick break. Yeah mm hmmmm. So you said

your work has kind of come full circle. Um, you
moved away to illustrations for a while with bright subject
matter for school and for clients, and then you've brought
it back around and now you're doing some work that
talks more about your life experiences. Can you tell us

about a recent project. Yeah, So last summer I had
a show called how Nice over in downtown Atlanta, and
the show was primarily made of photography, video installations, sound installations,
and a performance piece, And so with that show, I

had had to keep it secret when I started because
people are so used to these illustrative characters and really
fun scenarios, and I wanted to have people kind of
be shocked when they entered. I feel like when you

sort of have something shot you, you pay more attention.
The show consisted of I believe it was around eight
self portraits to video installations, and a performance piece. In
one piece from how Nice called You Finally Look Normal,
Barry sits down on a couch with a wife and child,
and the description for the photo they explains how people

have told him that they wish you could have a
normal life because his disability hasn't classified his quote unquote
normal in society. The last line of the description reads,
what if I had the kid and wife and everyone
on earth looked like me? Then would that be normal?
But before his piece was something that was really interesting
to me because it kind of became somewhat of an experiment.

Leading up to the show, I did a lot of
research on freak shows and how prominent they were in
a period of time, and I kind of felt it
was interesting that people would pay to see others with
disabilities and deformities and disfigurements, and also found it kind

of ironic that, you know, when I go out to
buy groceries or to get a cup of coffee, or
to hang out with my friends, I'll have people stare
at me, but in turn I pay for that experience.
I you know, I had to buy the cup of coffee,
I had to go buy the groceries, and I'm kind
of like paying for people to stare at me unwillingly,

and so I kind of wanted to create an experience
out a voke to that. So in the space Murmur,
which is where it was held, Murmur is kind of
like a large rectangle, and in the back of Murmur
there was a hun a large paint curtain and kind

of hunting around, kind of like a half cylinder. And
in front of the curtain, I ended up hiring a
actor to play a marine master, and the marine Master
would go and kind of yell inside the space and say,
pay five dollars if you dare to see the greatest

free show of your life, and you would try to,
you know, be the hypeman for this mysterious thing behind
the curtain. And I was really uncertain if people would
actually interact with it. But fifteen minutes of opening the show,
we already had a line kind of almost across the

gallery waiting to get in. So basically there was a
table in front of the curtain, and on the table
there was a set of rules, and a set of
rules was, um, you could only stay in for two minutes, um,
but you can leave at any time, and we had
to take your phone and we would also have to

put ear plugs in your ears. And the reason why
we had to put ear plugs in your ears was
to kind of take away of since, Um, for me
being deaf, it's really intimidating when you know, I have
people approached me and sometimes, you know, I had to
ask people what they're saying, even if they're asking me

really rude questions, because I may not understand them fully.
So it becomes a very intimidating experience. And so I
wanted to kind of recreate that as well. So you
were only able to go one person at a time.
So participants would put on earplans and they would give
us their phone and they would walk in behind the curtain.

And behind the curtain knows a stage with an audience
and the audience. All they really did was they would
stare at you, they would laugh at you, and they
would whispered to other audience members while looking at you,
so kind of getting this feeling of intimidation, of feeling judged.

And the audience members did not talk to the participants.
They did not talk to whoever was on stage or
anything like that. And so sometimes participants would stay for
the whole two minutes, and sometimes they would leave immediately.
And one way I also tried to really a vocal

sense of intimidation was with the performers who were the
audience members. We practiced for a month some months, and
we would all talk about what made us intimidated and
what kind of made us feel vulnerable, and so it
really used all of that into the performance as well. UM.
And so after the participant who was on stage would

leave the installation, there would be asked to fill out
a questionnaire basically just of how they felt um in
that piece. And it was very interesting because for me,
the feeling that I have sometimes very lonely and um,

I sometimes feel like I'm the only one experiencing this,
and come to find out that I'm not the only
one experiencing this um. There were a lot of people
who had adverse stories, really tell me their experiences and
how much it related to that piece. And then there
were people of privilege who kind of realized, like how

rodney it is to stare and and how rude it is,
and and there were some people who were pretty angry.
And that's our tad too, because you're not going to
please everybody, and not everyone's going to understand your experience
or take the time to empathize anyway. So, as someone
who is an artist and also of this film and

consumes a lot of media, what can you tell us
about representation and some maybe some of the tropes. Well,
first of all, one reason why I made myself the
subject matter of the body of work and how nice
and some of my more recent photography work, is that

I did not grow up with any sort of representation
of somebody with the figure mints or or facial differences.
And usually if I did see somebody with facial differences, um,
that would be a villain um, very much like say
Captain Hook who is missing an arm, or Darth Vader

who has a speech impediment and hides his face because
it is disfigured. And um, you would also have characters
like the Hunchback and truth Tom kind of alluding to
you know, that character never really gaining a very reputable
or meaningful romantic relationship. So there are a lot of

troops that kind of show that disability is undesirable and
or evil or disability is ron so people turn to
be evil. That's kind of what that's saying in a sense.
And um, that's pretty domeaning and it's pretty sad. And

I think the importance of proper disability representation is really
important because we are out here and we live lives
like everyone else. Um. There's also examples of characters who
are acting like they have disabilities, but they in fact

are actors who are perfectly able. Um. For example, the
recent Wonder movie that came out, Um, it was about
a child with Treacher Collin syndrome, which is actually sort
of a branch away from what I have, And the

people hired a non disabled actor and put makeup on
him to make him look like he had that syndrome.
And so at the end of the day, that actor
can take that mask claw off. But people who have
fatual just fingermnts do not have that privilege of taking

the mask off. We have a little bit more with
Barry after another quick break. Mm hmmm, mm hmmm, mm hmmmm.

So people who came into the booth, we found out
last week there were so many different ways that people
could feel different. They could feel like an outsider because
of their sexuality, or because of their their race, just
so many different forms of identity. And they talked about
feeling like they were more comfortable with themselves when they

they found a home. And I wondered, for you, knowing
that you come from a small town and you're in Atlanta, now,
I wonder what home means to you. When I was
living in a small town, I never really had the
opportunity or understanding that the way people treated me I

was wrong or rude. Um. I was used to being
stared at. I was used to kind of being belittled. Um,
people talking down at me, like how are you today?
I was like talking to me like I'm a child.
And so when I moved to Atlanta, it was a

really interesting juxtaposition because I was still getting asked these questions, um,
but I was also making really valuable relationships. And you know,
in time, what that taught me was that home is
in the relationships that you gain and and the people

that really accept you for you. Um. They don't just
talk to you about your disability or or your looks
every day. They're just people that you know, one has
been time with you and um. You know that can
be family, that can be friends, that can be partners. Um.
But for me, home is within people and the relationships

that I have outside of that is not a physical
space for me. For someone who is feeling different, I
wonder what advice you might have for them. Yeah, for me,
what has helped as an outlet of expression. And you know,
outlets of expression do not have to be published, They

don't have to be public, they can be private. They
can be a must your self if you want it
to be. But um, I've alway has found outlets of
creativity an expression to be helpful for me. And that's
why I've always turned back to creating work that talks

about my experiences because there's still work to do and
there's also times in my life where I still feel
and secure and not you know, totally happy with it
and that will always be there. And you know, outlets

of expression are really important and there's so many ways
regarding nobility and things like that. There's so many ways
of expression, whether through writing or poetry or music or
painting or anything. Um, really there's an expression if you're
you know, just kind of being honest with yourself, and

again it's okay to keep that private if you just
because you have an expression of vulnerability does not mean
that you have to share that. Sometimes it's fulfilling to
just make something for yourself and I do that sometimes
and there's sometimes where you know, it takes me a

year to share something, and that's okay. I think while
we have a lot of access to more social media
outlets and things like Facebook and Instagram, you know, right
now we're sort of an a pressure to share everything instantly. Um,
it's okay to know that, you know, if you don't

feel like sharing something, you have every right to keep
that for yourself and expressed something for you and we
want to know what you think. You can email us

at the Question Booth at house to forks dot com,
or find us on Instagram at the Question Booth. We'd
like to give us special thanks this week to our
executive producer Julie Douglas and of course to Barry for
joining us. And actually Barry did all the music this
week except for the track you're hearing right now, which
is coincidentally Barry and myself. We'd also like to thank
Pont City Market for hosting the Question Booth. We'll peek

behind the curtain. This is the first week that Kathleen
and I have recorded our voice overs in the Question Booth.
Welcome Dylan. This is my home. It's a great home,
It's cozy. The Question Booth is written and edited this
week by me, Dylan Fagan, and my co host, Kathleen Quillian.
Thank you Kathleen, Thanks Dylan, and if you're in Atlanta,

you can visit the Question Booth too. We're on the
second floor Pont City Market to five pm Friday through Sunday. Also,
if you like what you hear, we love if you
give us a quick review on iTunes helps other people
find the show. Okay, so before we go, what are
we talking talking about? Next week? We're listening to the
answers to the question what is the difference between a

human and a machine? Interesting? Until then, see you in
the Question Bruth

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Dylan Fagan

Dylan Fagan

Kathleen Quillian

Kathleen Quillian

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