Tourettes Syndrome I swear its no joke
thank you very much
everybody and thank you so much for
inviting me to your annual tedx
um annual event at bath i’m delighted to
be here the topic of
my talk uh this morning tourette’s
syndrome i swear it’s no joke
draws from research that dr molina mali
from the university of oxford and i have
been doing over a number of years
and in this research we have been
exploring
people’s attitudes towards tourette’s
syndrome
and also exploring the the lives of
individuals with tourette’s and the way
that tourette’s
affects their daily living
and this topic of joke
and human uh was not something that
we had set out specifically to to look
at
however in our most recent research
where
we did some qualitative survey
uh research of 68 people
with tourette’s and then followed up by
16 in-depth interviews
the aspect of joking and humor really
came out and resonated and
it it also um it also
fitted in with some controversy that
occurred last year at edinburgh’s fringe
festival because the edinburgh fringe
funniest joke award
was presented to a comedian called olaf
falafel
and the winning joke was this
i keep randomly shouting out broccoli
and cauliflower i think i may have
to florets and this was
controversial because whilst many people
with tourette’s
syndrome didn’t think that there was
anything wrong with that joke at all
but actually it was a rather clever play
on words
there was also a sense that jokes like
that
helped to perpetuate myths about ticks
and about tourette’s syndrome yet over
the years
jokes about tourette’s have resonated
and they’ve also shaped what people
think about the condition
but in a very narrow and specific way
so this um this theme if you like
of people joking about tourettes came up
in our most
recent research and i just want to thank
all of the research participants um
and also to gerald harris and dan zarin
comedians who
have tourettes themselves for their time
and their willingness to talk to us
and i also can acknowledge anybody out
there listening this morning
and that has tourette’s syndrome
themselves
and and also to comedians now you also
know because of that introduction that
this
idea of humor and joking also is
uh close to my own heart because
although i’m a professor of
social policy i have also done stand-up
uh comedy in the past
and i can’t tell you whether i was ever
very good at it
but the fact that i’m clearly not a
well-known comedian
and the fact that i’m still a professor
of social policy
shows that it wasn’t a career move for
me
before i talk about what comedians with
tourette’s are actually doing
in relation to this topic let’s uh
briefly
look at tourette’s syndrome in more
detail
next slide please sorry i’m doing this
like myself
okay so uh it tourette’s syndrome in
terms of prevalence
in the uk around about one percent of
the uk population
has tourettes and that mirrors
global prevalence so it’s not an
insignificant
amount of people that we’re really
talking about
what we know about the condition is it’s
a neurodevelopmental condition
at childhood onset and there are more
males than females with it and it is
characterized by ticks
so for a diagnosis one would have to
have
multiple motor tics so that would
include eye blinking
eye rolling involuntary movements
of hands or head for example and at
least
one vocal or phonic tick present for a
year for the diagnosis
and vocal or phonic tics would
include maybe unusual sounds or noises
such as squeaking
or vocalizations uh such as echolalia
which means repeating words of other
people or coprolalia
which refers to swearing or
shouting out obscenities now the ticks
usually peak in adolescence but they may
diminish
in frequency and intensity by adulthood
and 80 percent of people with tourette’s
have additional conditions for example
um ocd so obsessive compulsive disorder
or adhd attention deficit
hyperactive disorder but
people with tourette’s it’s not a
homogeneous group it’s a heterogeneous
group of people everyone is individual
and so everyone
will have their own repertoire of tics
and they may
some pers people may have some
particular ticks and other people
won’t have those same ticks
and through among many
other aspects are the testimonies that
people gave us and and what they told us
about their lives
uh were that the ticks can be very
debilitating and it can be
incredibly painful and also sometimes
dangerous so
if you think about somebody um cooking
and they have uncontrollable movements
then that could actually be problematic
um
so in order to authenticate our research
we’re using quotes here so you’ll see a
lot of these quotes and these four
are quotes that we have from people with
tourette syndrome
from our participants so here’s one
about the impact on day-to-day lives
then it used to be really uncomfortable
you know some of the ticks because i
used to stretch my mouth
open so much and so often i used to get
sores
down the side of my mouth from the
constant stretching of the skin
and another one your eye and eyeball
swell because you tick that match
and then another quote my voice cracks
and squeaks every once in a while so i
get
i guess i get a number of people who
have picked on me and so
this is the reality uh for people who
have um ticks
and although there’s a general awareness
within society of tourette’s it’s
um we can say that it’s very
narrow and limited and unfortunately
this has impacted on people’s uh
lives and what people were telling us
about the stigmatization that they felt
as they were growing up
so one person saying on a saturday at a
pub and i’ll be making noises he
his father would be absolutely furious
with me because he felt i was showing
him up so
the idea that families um
don’t necessarily or haven’t in the past
necessarily known
um what tourette’s is and of course
diagnosis has
not always been forthcoming because
medicine hasn’t quite caught on
unfortunately
um with the science in terms of
tourette’s and then another person which
is maybe even more
tragic i was hidden in the cupboards and
the rooms i was never taken out into
public
i was even kept away from my own family
except from my grandparents
and then in school really
teachers again not knowing necessarily
what it was about particular children
that was different not really
understanding why
so this person saying i was just a
naughty boy in school
and then after my diagnosis i was a
naughty boy
with a label so even when they had that
diagnosis that actually schools
had not caught up and hadn’t really
understood what it meant
we also found that within employment
that there were barriers
and there were blockages in terms of
employment and that people
were discriminated against and that in
terms of employers not making
reasonable adjustments and not
necessarily
thinking they even had to for people
with tourette’s syndrome
so this person saying working in a bar
and stressful nights and you start
ticking
and people start asking questions poking
fun at you drunk
and you try and speak to your employer
about it i need to stop right now i need
to pull myself
away or go home or something because
it’s going to make me worse
and they don’t understand that and then
another exam example very big office
very open plan and obviously i started
noises and stuff
not as bad but obviously they were
audible and then after about seven days
the contract came to an abrupt end and i
was basically told
you’re not needed anymore so really
feeling that
even though um people with tourette’s
syndrome very
uh just like anyone else in the in the
general population very
gifted and very intelligent
and having you know would be really
fantastic
employees that actually uh a prejudice
and discriminated
against and then yet there were other
people who
really told us about the richness of
their lives um
that they have great relationships that
they have been able to go through those
barriers
um that have tried to uh prevent them
from self-actualizing if you like and
that they
really have great careers um and
this quote exemplifies this my wife
loves my tourette she loves it and it
has taken me a year and a half to accept
that that is fine
she thinks it is adorable and hilarious
and sweet and she encourages me and
praises me
and it makes life wonderful but it is
difficult even to accept
that people accept all my in in
idiosyncratic crusty
sorry um and here you have somebody then
who exemplifies a range of people who uh
even though life is sweet for them in
many ways
they still have this duality of where
they maybe don’t feel accepted by
society or not quite accepted by society
and one of the
common themes that came up out of this
recent research
was this myth that the mythology of
tourette’s just being a swearing disease
and the fact that people hone in on that
and they pick out on that and that’s
what they talk about but they also make
fun of that and that
diminishes people with tourette’s to a
kind of a joke
and where our participants were saying
do you know what there’s nothing
funny there’s not it’s not a joke um
having those ticks and being awake all
night and then being exhausted the next
day and trying to go to work
when i’ve been up all night you know
ticking so this person’s saying every
time you see it on tv they always pick
on the swearing and then make fun of it
and of course the the problem with all
of this
is that swearing on coprolalia is only
in about ten percent of people with
tourette’s they
don’t have a lot of people don’t have
that um tick
and this person say because i don’t
suffer it it’s not something i can link
to and identify with
swearing sells tourettes to the media so
this complete
kind of um misnomer this complete
mythology
of what tourette’s really is but
actually that’s what’s been
picked up so joking aside then
that what what we did with this was that
um finding this idea led us to begin to
talk to comedians themselves with
tourette’s and they’re
i was surprised myself that there’s a
there’s a growing number of comedians
uh other people with tourettes in
different art forms as well
um in the theater and in music but there
is this growing number of people
who are comedians and who are using
their own jokes
in their stand-up sets and they are
really acknowledging and showing us that
humor
is a powerful tool and what they say
about these kinds of jokes that just
focus
on swearing is this i just find that
typically people are very lazy about how
they write
the joke and they just continue to use a
stereotype but the only tip
is swearing and shouting out obscenities
and so this idea that it’s not a clever
joke
that it’s kind of lazy the default
position is to mock people
and then this other comedian is saying
if any
if everyone does a coprolalia joke and
everyone remembers that joke that’s why
people continue that joke
because that’s all they hear and so
again uh
let’s turn this on its head and start
thinking about
um who really has the experience to
actually say and use and write jokes
about tourettes
well it’s the comedians themselves and
they feel that they’re
on a bit of a mission um to
educate people to make people laugh but
use their own experiences
of tourette’s and write jokes about
those
and this person saying i’m normalizing
that here is a person on stage showing
who he is
i am just showing you the um that this
is what it is like to be someone like me
and it’s not that different from you
and some of these comedians have told us
that they actually find it quite
therapeutic going on stage
because they can they feel that they can
think because in other aspects of their
lives and for most of their lives
they’ve been trying to repress the ticks
and that’s very that’s very difficult
for them to do so when they’re on stage
they can just pick as much as they they
that you know
they don’t have to repress it or
suppress it
um and then secondly we’re not making
fun of the disorder so we’re not mocking
uh we’re not making fun of the disorders
or the syndromes we are doing it in a
way
of showing that we have been through we
are not laughing at people’s experiences
and then i like educating people through
comedy of what i have been through
i i kind of use it as a way of just
telling people
how it really is as opposed to the lazy
swearing jokes which
i don’t think are even that great
and their strategy does seem to be
working uh
and so people they’ve been becoming very
successful they
they doing their sets to stand out
audiences
um people are coming to see them again
and again
and they’ve had people come up to them
and say things like this i have had
people come up to me and say that they
had
no idea that tourette syndrome was the
way i describe it
they had no idea that there were more
ticks they had no idea that motor tics
even existed and then another person i
have had somebody say
my son or my daughter has it and i am
going to bring them back to your show to
see it so this um
way of using humor
now as a shield and not necessarily a
sword
to um not to mock people but to enable
people to understand and it’s in a
sense this art form is being used in a
very very positive way
well um i’m going to uh leave
the last comment and you might say the
last laugh to one of the comedians
and of course this resonates with myself
um
in terms of what i was saying about
myself at the beginning of this
presentation i have always thought that
comedy is much more educative than a
lecture
because a lecture is something that you
know if it is not entertaining enough
or interesting enough people get bored
with it whereas
with comedy we can keep it light and fun
and we can still get our point across
well i hope that you have found this
interesting um
and i’ve been willing to talk about it
with you more and if you are interested
here are the references and uh some
references to
our work that we’ve been doing on
tourettes so
thank you very much