[Applause]
hi I’m that was intense
welcome to my world I have Tourette
syndrome a neurological disorder that
makes me have these uncontrollable
outbursts randomly throughout my daily
life and to describe the specific mental
sensation that precedes these tics as we
like to call them is practically
impossible but what I like to say to the
young people I you routinely work with
as a teaching artist or a substitute
teacher is you know when you have a
really bad mosquito bite and it’s just
itching like crazy but you know that if
you scratch it it won’t go away too long
make it worse but but you can’t take it
so you would do it anyway thinking maybe
this time it’ll be different maybe I’ll
actually scratch the itch and it won’t
come back
that’s kinda what it’s like I mean it
doesn’t actually physically itch there’s
just a way to describe how it feels in
my mind but but sometimes it does
manifest in a sort of physical way and I
just really need you to understand
exactly what I’m saying even though
you’re probably not gonna be able to but
yeah so the social disconnect and
obsession is always right there with the
tics and anxiety so that I’m always
carrying around this seafood paella of
neuroses and on top of that I live in
New York City so I’m constantly ticking
in large groups of people whether it’s
in an elevator or on the subway or in a
conversation with someone I just met
like hi nice to meet you what do you do
with your life sorry I I had to Rhett
syndrome it’s a neurological disorder
bla bla bla bla bla now I’m talking
about me again
but I realized now that I have a
responsibility to educate people
and as much as I would like to bury my
nose in a book I can’t escape the
reality that an entire subway car is
staring at me and I only have a short
window of opportunity to explain myself
before they go off into the world
there’s one time I was at the back of
the C train looking out the window and
sidenote the C train is the oldest train
line in the New York City subway system
and it’s the only one where there are
windows in the front in the back so you
can look out at the hundred-year-old
tunnels while you’re moving through them
so I’m pressed up against the glass just
looking out just like when I was a
little kid and just as giddily hopping
up and down and pointing like whoa
graffiti and whoo
rats and out of nowhere I just let out
this massive ugly tick I mean and I turn
around and everyone is looking at me now
the way I handled it is the way I wish I
always did I laughed and made a little
joke and then gave a brief explanation
to a crowd of smiling faces and nodding
heads and then they went off into their
day having learned something about
Tourette syndrome but I wasn’t always
comfortable enough to do it oh just
pretend it wasn’t happening or ignore
this elephant in the room or sort of
explain it away briefly with with barely
any explanation so that the person I was
talking to which is back away and then
go get tested for tuberculosis without
having learned anything about Tourette’s
I’d already deeply misunderstood
disorder but I have had millions of
conversations with strangers about it
some go better than others sometimes
people are friendly and open-minded and
interested
sometimes they’re rude and ignorant and
make me want to bash their faces in
sometimes they tell me they know what
Tourette’s is but they still want me to
cover my mouth fair enough
sometimes they say they know what it is
but they don’t believe that I actually
have it
sometimes they try to offer me
suggestions for treatment lecturing me
or or believing that they can swoop in
and solve my problem with with remedies
I haven’t tried hey you know what I have
an allergist I really want you to try
you know what have you ever tried
acupuncture you know what yours you
should stay away from gluten you should
stay away from sugar you should need too
much dairy you know what have you ever
tried transcranial magnetic stimulation
yeah yeah yeah no I have I have I have
please let me go I understand that
people want to help but it’s frustrating
when the suppose it help actually hurts
and how little they actually understand
that we have a tendency at least in
America we do to fix problems quickly
and to put a positive spin on things but
when there’s nothing positive about it
and for someone to just drop meaningless
platitudes like everything happens for a
reason or different strokes for
different folks it feels like they’re
ignoring me or they just don’t want to
deal with the actual complexity of the
disorder and suddenly it’s like I’m
talking to a robot and they’re not
actually talking to me that it’s sort of
like spouting meaningless drivel and I’m
like what is there someone else here I
don’t know about because this is the
weirdest thing I’ve ever seen
like does your system have to be
rebooted or something but of course you
can’t say that you have to just listen
and pick your battles I’ve learned that
as tough as it can be to hold my tongue
while someone is trying to exorcise my
demons no one benefits from hostility
and like it or not I’m in a unique
position here my wife once told me that
a friend of hers told her a story from a
friend of hers that she’s been on the
subway in New York and overheard this
man loudly clearing his throat and
sniffing and attracting lots of
hostility from strangers nearby
and apparently he explained that it was
Tourette’s syndrome and and engaged them
in a conversation about it and my wife’s
friend determined that that actually had
been me that’s honestly when I realized
that I’m in a special position to
utilize these unwanted interactions for
good I mentioned before that I work with
young people I have a colorful career as
a teacher in many different capacities
as an acting teacher as an after-school
sports coach as a substitute teacher
going into lots of scary places and
far-flung parts of New York City but
some of the most meaningful experiences
of my life have been working with kids
with disabilities as someone who
remembers elementary school as a time
when I couldn’t do anything right and I
was constantly feeling like something
was wrong with me because I just
couldn’t keep up with my classmates
it’s especially empowering to encourage
these young people to embrace the
totally bonkers way that their minds
work and because I’m an actor and I and
I teach acting I get to have this
experience building theater with kids
with disabilities I will never forget
the boy on the autism spectrum who
created his own character an original
play we were making he was a two-headed
cat named Beverly and Elliott who lived
inside of a trunk in a giant mansion in
the middle of a big desert surrounded by
a massive forest on an isolated island
Attilio la
he would rush out onstage and then yell
at his castmates hahaha you weirdos out
there I’m smart and you’re weak you
stole the show and luckily I’ve had the
opportunity to work with kids with
Tourette’s as well I serve on the board
of the New York City chapter of the
Tourette Association of America and is
amazing to meet these kids and to relate
to their KITT tics and to see how much
more comfortable they are talking about
it than I ever would have been at their
age I had the opportunity to be sent
down to Washington DC a few years ago to
take part in this massive conference for
people with Tourette’s I don’t have time
to explain all the incredible stories
from that week but one thing that really
touched me was how comfortable they all
were with who they are I mean we were
down there in this isolated environment
together ticking and just doing all the
wild stuff we do without any worry of
bullying or harassment for one week we
just got to be normal I would love to
know what the hotel staff thought of
that week and a lot of people with
Tourette’s have some sort of creative
ability that separates them from other
people and it’s not always easy to
determine to determine what that is or
how it’s useful but it’s worth it I mean
you might not be any good at all at
algebra but maybe you’re an expert at
arranging your shoelaces according to
color and size until they fill up your
entire floor and it’s hard to just to
figure out how that could be an ability
but again it’s it’s worth it there was a
very successful surgeon who had really
violent tics I mean throwing things
against walls but when he cut open a
patient he never made a mistake and then
of course Tim Howard the incredibly
popular goalkeeper for the u.s. national
soccer team has Tourette’s and when the
play is upfield the
ticking the whole time but when he’s
tending goal is completely focused and
composed now I don’t know why any of
this stuff happens they actually know
very little about what Tourette’s is but
I do know that for those of us who think
a little bit differently in
non-traditional ways there’s something
that makes us unique that we have to
find as an educator I really do try to
take the time to let those people find
their way because it’s worth it I mean
do you really want to live in a world
without a two-headed cat I know I don’t
thank you
[Applause]
hi I’m that was intense
welcome to my world I have Tourette
syndrome a neurological disorder that
makes me have these uncontrollable
outbursts randomly throughout my daily
life and to describe the specific mental
sensation that precedes these tics as we
like to call them is practically
impossible but what I like to say to the
young people I you routinely work with
as a teaching artist or a substitute
teacher is you know when you have a
really bad mosquito bite and it’s just
itching like crazy but you know that if
you scratch it it won’t go away too long
make it worse but but you can’t take it
so you would do it anyway thinking maybe
this time it’ll be different maybe I’ll
actually scratch the itch and it won’t
come back
that’s kinda what it’s like I mean it
doesn’t actually physically itch there’s
just a way to describe how it feels in
my mind but but sometimes it does
manifest in a sort of physical way and I
just really need you to understand
exactly what I’m saying even though
you’re probably not gonna be able to but
yeah so the social disconnect and
obsession is always right there with the
tics and anxiety so that I’m always
carrying around this seafood paella of
neuroses and on top of that I live in
New York City so I’m constantly ticking
in large groups of people whether it’s
in an elevator or on the subway or in a
conversation with someone I just met
like hi nice to meet you what do you do
with your life sorry I I had to Rhett
syndrome it’s a neurological disorder
bla bla bla bla bla now I’m talking
about me again
but I realized now that I have a
responsibility to educate people
and as much as I would like to bury my
nose in a book I can’t escape the
reality that an entire subway car is
staring at me and I only have a short
window of opportunity to explain myself
before they go off into the world
there’s one time I was at the back of
the C train looking out the window and
sidenote the C train is the oldest train
line in the New York City subway system
and it’s the only one where there are
windows in the front in the back so you
can look out at the hundred-year-old
tunnels while you’re moving through them
so I’m pressed up against the glass just
looking out just like when I was a
little kid and just as giddily hopping
up and down and pointing like whoa
graffiti and whoo
rats and out of nowhere I just let out
this massive ugly tick I mean and I turn
around and everyone is looking at me now
the way I handled it is the way I wish I
always did I laughed and made a little
joke and then gave a brief explanation
to a crowd of smiling faces and nodding
heads and then they went off into their
day having learned something about
Tourette syndrome but I wasn’t always
comfortable enough to do it oh just
pretend it wasn’t happening or ignore
this elephant in the room or sort of
explain it away briefly with with barely
any explanation so that the person I was
talking to which is back away and then
go get tested for tuberculosis without
having learned anything about Tourette’s
I’d already deeply misunderstood
disorder but I have had millions of
conversations with strangers about it
some go better than others sometimes
people are friendly and open-minded and
interested
sometimes they’re rude and ignorant and
make me want to bash their faces in
sometimes they tell me they know what
Tourette’s is but they still want me to
cover my mouth fair enough
sometimes they say they know what it is
but they don’t believe that I actually
have it
sometimes they try to offer me
suggestions for treatment lecturing me
or or believing that they can swoop in
and solve my problem with with remedies
I haven’t tried hey you know what I have
an allergist I really want you to try
you know what have you ever tried
acupuncture you know what yours you
should stay away from gluten you should
stay away from sugar you should need too
much dairy you know what have you ever
tried transcranial magnetic stimulation
yeah yeah yeah no I have I have I have
please let me go I understand that
people want to help but it’s frustrating
when the suppose it help actually hurts
and how little they actually understand
that we have a tendency at least in
America we do to fix problems quickly
and to put a positive spin on things but
when there’s nothing positive about it
and for someone to just drop meaningless
platitudes like everything happens for a
reason or different strokes for
different folks it feels like they’re
ignoring me or they just don’t want to
deal with the actual complexity of the
disorder and suddenly it’s like I’m
talking to a robot and they’re not
actually talking to me that it’s sort of
like spouting meaningless drivel and I’m
like what is there someone else here I
don’t know about because this is the
weirdest thing I’ve ever seen
like does your system have to be
rebooted or something but of course you
can’t say that you have to just listen
and pick your battles I’ve learned that
as tough as it can be to hold my tongue
while someone is trying to exorcise my
demons no one benefits from hostility
and like it or not I’m in a unique
position here my wife once told me that
a friend of hers told her a story from a
friend of hers that she’s been on the
subway in New York and overheard this
man loudly clearing his throat and
sniffing and attracting lots of
hostility from strangers nearby
and apparently he explained that it was
Tourette’s syndrome and and engaged them
in a conversation about it and my wife’s
friend determined that that actually had
been me that’s honestly when I realized
that I’m in a special position to
utilize these unwanted interactions for
good I mentioned before that I work with
young people I have a colorful career as
a teacher in many different capacities
as an acting teacher as an after-school
sports coach as a substitute teacher
going into lots of scary places and
far-flung parts of New York City but
some of the most meaningful experiences
of my life have been working with kids
with disabilities as someone who
remembers elementary school as a time
when I couldn’t do anything right and I
was constantly feeling like something
was wrong with me because I just
couldn’t keep up with my classmates
it’s especially empowering to encourage
these young people to embrace the
totally bonkers way that their minds
work and because I’m an actor and I and
I teach acting I get to have this
experience building theater with kids
with disabilities I will never forget
the boy on the autism spectrum who
created his own character an original
play we were making he was a two-headed
cat named Beverly and Elliott who lived
inside of a trunk in a giant mansion in
the middle of a big desert surrounded by
a massive forest on an isolated island
Attilio la
he would rush out onstage and then yell
at his castmates hahaha you weirdos out
there I’m smart and you’re weak you
stole the show and luckily I’ve had the
opportunity to work with kids with
Tourette’s as well I serve on the board
of the New York City chapter of the
Tourette Association of America and is
amazing to meet these kids and to relate
to their KITT tics and to see how much
more comfortable they are talking about
it than I ever would have been at their
age I had the opportunity to be sent
down to Washington DC a few years ago to
take part in this massive conference for
people with Tourette’s I don’t have time
to explain all the incredible stories
from that week but one thing that really
touched me was how comfortable they all
were with who they are I mean we were
down there in this isolated environment
together ticking and just doing all the
wild stuff we do without any worry of
bullying or harassment for one week we
just got to be normal I would love to
know what the hotel staff thought of
that week and a lot of people with
Tourette’s have some sort of creative
ability that separates them from other
people and it’s not always easy to
determine to determine what that is or
how it’s useful but it’s worth it I mean
you might not be any good at all at
algebra but maybe you’re an expert at
arranging your shoelaces according to
color and size until they fill up your
entire floor and it’s hard to just to
figure out how that could be an ability
but again it’s it’s worth it there was a
very successful surgeon who had really
violent tics I mean throwing things
against walls but when he cut open a
patient he never made a mistake and then
of course Tim Howard the incredibly
popular goalkeeper for the u.s. national
soccer team has Tourette’s and when the
play is upfield the
ticking the whole time but when he’s
tending goal is completely focused and
composed now I don’t know why any of
this stuff happens they actually know
very little about what Tourette’s is but
I do know that for those of us who think
a little bit differently in
non-traditional ways there’s something
that makes us unique that we have to
find as an educator I really do try to
take the time to let those people find
their way because it’s worth it I mean
do you really want to live in a world
without a two-headed cat I know I don’t
thank you
[Applause]
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