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