Living with Tourette's syndrome - Marc Elliot at TEDxYouth@Hewitt

In his presentation, "What Makes You Tic?," Marc Elliot took his experiences of not fitting in, of not feeling comfortable with others, to discuss fundamental lessons about tolerance.

Before I begin I just want to say

a humongous thank you to TEDxYouth@Hewitt.

This is an incredible privilege to be here.

So who here has heard that I have Tourette syndrome?

OK, can't see. OK.

It is true, I do have Tourettes.

I've had Tourette's for about 20 years of my life.

Something cool has happened to me though recently.

And as of about 5 months ago

I have learned how to control my Tourette's.

And so because I'm not gonna be ticcing on stage

I'm going to bring you back into my life

of what it's been like me for the past 20 years.

So we can watch this short clip.

WHAT MAKES YOU TIC?

(Tourette's ticcs)

(Involuntary jaw movements)

I have Tourette's by the way, just wanna
throw that out there. OK?

Fuck! Fuck!

Faggot! Faggot!

Nigger! Nigger! Nigger! Nigger!

Boston Public Library

What's the matter? Sir!

No, no. I have Tourette's syndrome.

Okay, well.

You know, can you find a way to --

because you're scaring people.

You can't control it?

No, it's called Tourette's syndrome.

Have you ever heard of it before?

I have, but --

It's a medical disorder.

And it's involuntary noises, so --

I'm not trying to bother.

(Chomps)

I won't tic.

I do have the world's strongest jaw. Yes.

My friends and I last year tried to estimate.

We think that I've ticced somewhere between

20 to 30 million times in my life.

Which is a good amount of times of ticcing.

And as you can imagine I've learned a lot

of different lessons from ticcing that many times.

One of them being about tolerance.

And for the past three years

I've had the incredible privilege and opportunity

to travel all around the United States

speaking with my presentation "What makes you tic?"

And I just try to teach people

how to become more tolerant individuals.

And I do that by sharing a lot of my personal stories

and by being really open about my challenges.

And I do this because when I do,

I find that people in the audience are simply reminded

of how little we know about each other's lives.

And it's my hope that when you remember that

that you have a little bit more compassion for yourself

and also for people who are different than you.

So let's start talking about Tourette syndrome.

Now who has heard of Tourette's before?

Wonderful.

Anyone who never heard of it? Never?

There's a couple. OK. Not bad.

So since most of you have heard of it,

where have you seen it in TV shows and movies?

If you can raise your hand really quickly.

Anyone?

Yes, in the way back.

(Audience) ABC News Special.

ABC News Special. Cool.

(Audience) Deuce Bigalow.

Deuce Bigalow: Male Gigolo. Classic movie, of course.

Anyone else?

Yes.

(Audience) South Park.

Do you think it's funny to bring up South Park?

Because it is, it was hilarious.

It is OK, so -- (Laughter)

I was crying with friends, it was so funny.

And has anyone seen the Tourette's Guy on youtube?

Tourette's Gut on youtube?

So he is my first cousin.

No, that's not true. (Laughter)

That's not -- (Laughter)

We're not all related. (Laughter)

(Laughter)

So I'm glad you've seen a lot of places,

but let me be very clear about something.

As you saw in the video, Tourette's is absolutely insane.

It is totally crazy.

And what's happening is that Tourette's creates

these itch like sensations inside of my body.

So right now I want you to try

to actually imagine having an itch.

Right now.

In my mouth I have this Tourette itch.

I wanna make clear.

It doesn't feel like the kind of itch
that might be in your arm,

but it's the same idea that

I didn't choose for it to be there.

It's completely involuntary.

And it's also very uncomfortable.

And when you see me go -- (Chomps)

or I say a word or do something with my body,

that's a tic.

That's actually me trying to scratch that itch.

Does that make sense?

So I have no control over that itch

but I do have some voluntary control, scratching it.

And people would always ask, of course:

"Why do you just not scratch it?"

And the reason it was so hard not to,

is 'cause imagine that itch that you have,

multiply that by 10 or 15.

And that's what it was like for the past 20 years.

And I've had all kinds of tics as you saw:

blinking, sniffing, chomping, words,

everything you can imagine.

And when I was in middle school,

then I started to say bad words.

Now who here has heard,

"If you have Tourette's you say bad words"?

Very big stereotype and rightfully so.

Funny thing is most people don't.

Less than 10% I think.

Unfortunately, I like to do things a little bit differently,

and I said all sorts of things.

As you heard on the video, I said some curse words,

I said body parts including the word penis,

maybe you've heard of it.

(Laughter)

And I also was a substitute teacher in life.

And one day I was subbing for a fourth grade class.

OK. Haven't said the joke. (Laughter)

So I'm in this class that I was ticcing "penis" a lot

and this one fourth grader yelled out.

He goes: "Mr Elliot, what are you saying?" (Laughter)

I'm like oh my God, what am I gonna tell this kid?

And another fourth grader yelled out:

"He's saying pizza!"

(Laughter)

Pizza. OK.

So as I also said tough,

some really offensive things as well.

Imagine saying the most offensive
things that you can imagine

to the people that you love the most.

Imagine saying the riskiest thing to your black friends.

I did that. Thousands of times.

My older brother is gay.

I said the most offensive things

that you can ever imagine to him.

This was by far the worst part about my Tourette's.

By far the worst.

And two summers ago I was in a Mc Donald's

and a guy came out to me and he goes:

"Oh, my god, dude, do you have Tourette's?"

I said, "Yes, as a matter of fact I do"

He goes, "That is so awesome!"

I was like, "Not exactly."

And so, he said to me, "Well do you say curse words?"

I said "Yeah."

He goes, "Well do you say the f word?"

I go, "Yeah". He goes,

"Dude, that's so cool because you have an excuse".

(Laughter)

And I thought about it for just a moment, I thought --

How can I try to convey to the stranger

what's it really like to have Tourette's?

So in the middle of Mc Donald's,

it was totally packed, and I said to this man,

"So do me a favor, I want you to say the N word

as loud as you can right now."

And he didn't say a word after that.

Because I think he got the point really quickly.

That even though it might be funny to say penis one time,

when you're saying such offensive words,

like I was doing over the past 20 years,

it's not very fun at all.

And as I always used to tell people,

"I am sorry if it bothers you, it bothers me more."

So you guys, that's my Tourette's in a nutshell.

But anytime that I talk I always wanna try to give people

the chance to see what is it like to have Tourette's.

So can everybody stand up very quickly?

Momentarily I'm gonna be giving you all
permission to have Tourette's.

This is your one chance in life to yell

"fire in a room" where there is no fire,

you can do a physical or a vocal tic,

I just ask that you don't say something

that could potentially offend someone else.

You have 10 seconds starting right now.

(People yelling)

OK. We can chill. We can chill.

Do you wanna know it's --

Do you wanna know what's messed up?

I was joking.

No I'm just kidding. No. I'm just kidding.

I do this though not because I think

it's really funny to see you all have Tourette's,

but this is just a cool social experiment.

Because, even though I gave you all permission

to have Tourette's and you knew everyone else did,

a lot of you still chose not to tic.

And I hope this was just a co-opportunity to see

what is it really like to have Tourette syndrome.

How uncomfortable it can be on a day to day basis.

So thanks for participating in that Tourettic experience.

Give yourselves a round of applause. Will you?

So, you guys can imagine, as some of you just experienced,

I've just had a different perspective in life.

I got to see on a day to day basis

how do people treat and react to someone

who is so different from everyone else.

I mean for 20 years, doing weird things like this,

chomping, saying offensive things,

doing weird things with my body, scaring people.

And I just had the chance to see what is it like

to be so different than everyone else?

And from that different perspective,

one of the most important lessons I learned

was about tolerance.

And I want to make something really clear:

I only talk about tolerance,

the lowest level in my opinion.

I only talk about tolerance.

And some people, including some of you,

maybe have a serious problem with that.

'Cause you might be thinking

"Mark, why aren't you talking about acceptance?"

"Isn't that so much more powerful?"

And I couldn't agree more.

However, in my life over the past 20 years, in my opinion,

I have just found that there are so many people

that don't even meet that basic threshold of tolerance.

So that's why I talk about tolerance.

And instead of using the word "tolerance"
I use a different word.

In fact a different phrase. And that is:

"Live and let live."

Have you ever heard that phrase before?

I did not invent that. Just so we're clear on that.

But to me that is what tolerance is all about.

Can I ask you your name?

(Woman in audience) Tammy.

Hey Tammy, don't worry, I won't call you up here.

If I'm gonna say I'm gonna tolerante Tammy,

this is what I think I'm really saying:

"I'm gonna live my life

and I'm gonna let Tammy live her life"

I'm gonna live and let live.

And I've learned so much about "live and let live"

not from reading it in a textbook

but just because I've been in so many
intolerant situations.

And after they happened

I came out with the most simple conclusion.

That when a person is being intolerant, usually,

he or she is making so many assumptions
about someone else,

and I think we all can agree
assumptions are totally OK to make.

But then they decide to turn those assumptions
into an action.

And I'll share a story with you.

Who likes Wendy's fast food restaurant?

Spice your crispy chicken sandwich every time.

So -- Standing in line at Wendy's.

And there's a woman next to me,

and I'm barking like a dog doing my think.

And she had no idea what was happening right next to [her]

and I can totally understand why.

So I looked at her, I said

"Hey m'am my name is Mark. I have Tourette syndrome.

I just wanna give you a heads up.

Not trying to bother you."

She sort of looked at me, dismissed what I had to say.

It was no big deal.

And then about 10 seconds went by,

and all of a sudden, this woman made an announcement

to all the workers that were facing us,

and she said out loud,

"Don't worry everyone, he is retarded."

And I took a deep breath and -- Headbutt!

No, I did not do that. No. (Laughter)

(Laughter)

It was the Tourette's. No, just kidding. So --

(Laughter)

I said, Mam I'm not retarded,
I just have Tourette's syndrome.

And I wanna say something on a very serious note.

She actually might have said that to try to help me.

She might have been trying to protect me.

But the point is that she only met me for 10 or 15 seconds.

Made so many assumptions about
who I was and what I was doing.

Which again, totally understandable.

But then she believed that whatever she thought

was true and turned those assumptions into an action.

And she chose not to live and let live.

And I've been in a lot of situations like this.

I've even been kicked out of a bus before.

I've had doctors tell me that

they don't think I have Tourette syndrome.

I've been laughed at. Everything you can imagine.

And I tell you this not because I want you to feel

bad about me or bad for me,

it's just that it illustrates so well how

there were these people who made

so many assumptions about someone else,

and believed that whatever they thought was true.

And in my opinion they really just let their ignorance --

and I don't mean ignorance in a negative way --

they just let their lack of understanding

of someone else's life dictate their own actions.

And so this is what "live and let live" is all about.

When we go about our own life,

and we see someone that is so different than us,

maybe they just look weird, they look funny,

a different skin color, different sexual orientation,

they have Tourette syndrome,

maybe they're just the annoying stranger.

Have you met the annoying stranger?

OK.

When we encounter those people in life

we can think whatever we want about that person.

We can make whatever assumptions we want,

we can make whatever judgements we want,

because, hey, we are human. That's what we do.

We make assumptions about people that are different than us.

But I say, why not just let it be that?

An assumption and only an assumption.

And, why turn it into an action?

That may negatively impact that person's life.

If at the end of the day we really do know so little

about each others lives and what we're going through.

And when you remember that, I hope that

that triggers something in you that says,

"Hey, I'm gonna live my life, I'm gonna let them live their life.

I'm gonna live and let live."

And I met someone two years ago

when I moved to Manhattan, of course in Manhattan,

that was the total epidemy of live and let live.

And this happened on 23rd and 7th.

I was walking down on the Ave.

I was walking down, I had my headphones on.

And I don't know about you guys,

but if I'm alone and my headphones are on, I'm dancing.

Great job, by the way, before.

So I'm dancing on the platform,

and I was ticcing a bunch,

and after about 30 seconds I noticed that

there was a guy about 6 feet away from me.

Now he had not looked at me one time yet.

But I was barking so loudly that

I just wanted to give him a heads up.

So I look over to this guy, I said,

"Hey Sir, my name is Mark, I have Tourette's.

Not trying to bother you.

I just wanted to give you a heads up."

And he slowly turned to me and he goes,

"Dude, no worries at all".

And then he went back to what he was doing.

And because of the way that he responded to me

I just, for some reason, felt so inclined

to go back and ask this man a question.

And I kid you not, I've never done this in my entire life.

So after about 2 minutes I muster up the courage.

I walk over to this guy. I go, "Sir,

I know this is really bizarre but

what were you thinking about me

before I told you I had Tourette's?"

"What was going to your head?" He goes,

"Honestly? I just thought you were having
a really good time."

(Laughter)

OK. I'm barking, I'm dancing,

I don't know what kind of party that is.

I said, "Well, what about when I started to chomp my teeth?"

He goes, "Oh yeah, that was weird."

(Laughter)

OK. Good. We have some honesty here. And I go,

"Sir, the reason I ask you is 'cause it was so cool what you did.

No matter what you thought about me,

no matter what assumptions you made about me,

no matter what judgments you had about me,

before and after I told you I had Tourette's,

you just totally let me live my life. You just let live."

And I told him about my speaking and my message.

And I finally asked him straight up.

I go, "Sir why are you like this?"

He goes "That's really funny that you ask that Mark"

And I should note, his name was Jay, first name basis,

long conversation. (Laughter)

And he goes "Mark, when I was 16 years old,

I was in the back of a city bus in New York City,

and in the front of this bus there was

this screaming, annoying kid."

You know the screaming annoying kid.

He said, "This kid was absolutely out of control,

and to make matters even worse,

it looked like he was sitting next to his dad."

So Jay was in the back of this bus thinking,

"Oh my God, why won't this kid just shut up?"

And Jay told me, there was a woman sitting next to him.

And that woman said to Jay:

"If that was my kid, I would really show him up."

And while they were talking about how annoying this kid was,

another stranger on the bus got up,

and walked up to this kid and to the dad.

And the stranger said to the dad,

"Will you please control your kid?",

as we all might have been thinking on the back of that bus.

And Jay told me, the dad turned to the stranger and said,

"His mother just died, we came from her funeral".

And Jay said, "Mark, at that moment in life

I realized I don't know anything about anybody.

I don't know what people are thinking,

I don't know what people are doing,

I just want to let people be."

In other words, I wanna live and let live.

And guys I want you to go back to this morning,

when you woke up and you were getting out of bed,

and I want you to think about a challenge

that you knew that you were going to be dealing with today.

Some kind of challenge, a struggle, an insecurity.

Something that you were dealing with.

And I should note, this could be really small,

it could be really big,

it might be as noticeable as my Tourette's,

or maybe, no one in this entire world

knows that you're dealing with this.

Everyone got something?

And now I want you to think about

how does that challenge affect your behavior?

Here's what I mean:

How does that challenge and dealing with it

influence the way that you behave and act,

that potentially alters the way that people perceive you.

For example, I've zits on my back.

I've had them my whole life. I hate them.

And sometimes when I'm in a room with friends

and my shirt is off, and I have to walk by them,

I will literally change directions when I walk by them,

so they don't have to see my back

because I'm so embarrassed.

How does your challenge influence your behavior?

I want you to take a quick glance at someone

in this room that you do not know. A quick glance.

This also might get awkward.

(Laughter)

And now I want you to take a quick glance

at someone in this room that you do know.

And if you don't know someone you can look at me.

You know me pretty well at this point.

(Laughter)

So I asked you to do this because --

Have you ever seriously just slowed down life,

enough for just one moment to think about

that stranger in the grocery store,

your friend in your classroom,

or maybe even your best friend.

Have you ever thought about

what challenges are they dealing with

that are potentially influencing their behavior,

and altering the way that you perceive them.

And when you think about your life

whether here at the Hewitt School,

or your life at work, wherever you are.

Have you thought about that maybe someone

is overweight actually because they're on

medication that's causing them to gain weight.

Or someone is really rude to you,

not because it has anything to do with you at all.

It's just because the night before their parents got divorced,

or the person is dealing with anxiety,

an eating disorder, their sexuality, or maybe

you just happened to experience that person

have one bad moment out of a really good day.

So the next time that you're about to turn

your assumptions into an action

that might negatively impact someone else's life,

gossiping about someone,

deciding to put someone down,

choosing to not be someone's friend.

Before you do that I encourage you to stop

and just think about this:

Do you really know what's going on in that person's life?

Do you really know what makes that person tic?

I think the answer is no.

And I hope that inspires something in all of us that says,

"I'm gonna live my life, I'm gonna let them live their life.

I'm gonna live and let live."

And I'll end with a quote that's an iteration from Plato.

I think it captures the essence of what my speech is all about.

And it goes just like this:

"Be kinder than necessary.

Everyone is fighting their own battles

that you know nothing about."

Thank you so much TEDx@Hewitt!

(Cheers) (Applause)