Tourette’s syndrome — why it doesn’t define me | TEDxAlbertopolis

Tourette’s syndrome — why it doesn’t define me | TEDxAlbertopolis


Translator: Bob Prottas
Reviewer: Chryssa R. Takahashi Hello (biscuit) I’m Jess Thom,
(biscuit) I’m an artist (biscuit) and part-time superhero.
(biscuit, biscuit) I have Tourette’s syndrome (biscuit) a neurological condition (biscuit)
that causes involuntary (biscuit) movements and noises called tics.
(biscuit, hedgehog, biscuit) There are three things (biscuit)
you need to know straight away. (biscuit) Firstly, (biscuit)
you’re going to hear the words “biscuit” and “hedgehog”
a lot in the next few minutes. (Laughter)
(biscuit, biscuit, hedgehog, biscuit) Secondly, (biscuit)
several times a day, (biscuit) my ticks suddenly intensify (biscuit) to a point where I completely lose control
(biscuit) of my body and speech. These episodes, which I call
ticcing fits (biscuit) look seizure like,
and need similar management. If this happens while I’m speaking,
(biscuit) my support worker will come
and help me (biscuit) and Daniel will take over.
(biscuit, hedgehog) Finally, (biscuit, biscuit)
if I tic something funny (biscuit) you’re absolutely allowed to laugh.
(biscuit) In fact, it’ll be a bit odd if you don’t.
(biscuit, hedgehog) I’m going to start by giving you a brief
introduction to Tourette’s, (biscuit) one of the most misunderstood
conditions on the planet. (biscuit, hedgehog, biscuit) Lot’s of people have heard
of Tourette’s (biscuit) but most of what they know
is based on myths and stereotypes. Let’s get some of these
out of the way now. (biscuit) Swearing. Tourette’s is often characterized
as the swearing disease. But in fact, coprolalia
(biscuit) the (biscuit) the technical name (biscuit)
for ticced, for ticced, for obscene tics (biscuit) affects only 10% of people
with the condition. (biscuit) I’m one of them
(biscuit) but (biscuit) but for me tic swearing makes
up only a tiny fraction of what I say involuntarily.
(hedgehog, biscuit) Tourette’s isn’t a rare condition.
(biscuit, hedgehog) It’s estimated to effect (biscuit)
300,000 people in the UK alone. (biscuit) It impacts each person differently. (biscuit, hedgehog, biscuit,
cat sex pajamas, biscuit) So (biscuit)
(Laughter) (Aladdin, biscuit, Aladdin died)
He doesn’t really, don’t worry. (biscuit, biscuit)
(Laughter) (hedgehog, biscuit) Some people’s tics (biscuit, biscuit)
will be barely noticeable, (biscuit) while others will behave in a way
that makes them stand out. (biscuit) Everyone with Tourette’s (biscuit) will have multiple motor tics,
and at least one vocal tic. (biscuit) These (biscuit) these can be
as simple as blinking. or as complex as jumping,
or saying things like: “The history of Iguanas
can be written in a tea pot.” (biscuit, hedgehog, biscuit) Tourette’s isn’t saying
what’s on your mind. (biscuit) I don’t think about biscuits
nearly as much as I talk about them. (Laughter)
(biscuit, hedgehog) (Aladdin, biscuit, hedgehog) (Applause)
(biscuit) Anything (biscuit)
I’ve ever known or experienced has the potential to become a tic.
(biscuit, hedgehog) Search (biscuit)
search for Tourette’s online (biscuit) and you’ll get simplistic definitions
(biscuit) that never really convey (biscuit)
the experience of having it. (biscuit) My sister found a description in
the Oxford Handbook of Clinical Medicine. (biscuit) It says: “Tourette’s is
(biscuit, hedgehog, biscuit, biscuit) expl (biscuit, biscuit, biscuit, biscuit)
explo (biscuit) Explosive, occasionally obscene
verbal ejaculations and gestures.” It goes on:
“There may be a witty, innovatory, phantasmagorical picture with mimicry,
antics (biscuit) and playfulness.” That’s the Tourette’s I recognize.
(hedgehog, biscuit) I’ve had tics since I was six.
(biscuit, hey, biscuit) As a child (biscuit) they were milder
and less noticeable. (biscuit) Then in my early twenties,
(biscuit) they began to intensify, and have a bigger impact on my life. In 2010 I co-founded
(biscuit) Touretteshero. (biscuit, hey, biscuit)
An organization (biscuit) that celebrates the humor
and creativity of Tourette’s. (biscuit)
Before starting Touretteshero, (biscuit) I found it hard to talk
about Tourette’s without tears. A single phrase shifted my thinking.
(biscuit) My friend Matthew
(biscuit, hedgehog, biscuit) described my tics (biscuit) as a crazy language-generating machine.
(biscuit) He told me (biscuit) not doing something creative with them
(biscuit) would be wasteful. This ide (biscuit)
this idea took root and it helped me to see
my tics as my power rather than my problem. (biscuit) Through Touretteshero, (biscuit)
I can recast the symptoms of my condition (biscuit)
as springboards for creativity. (biscuit, hedgehog) On the website (biscuit) I invite (biscuit, biscuit, biscuit)
on the website (biscuit) I share over 5,000 of my vocal tics
(biscuit) and invite anyone to make art in response.
(biscuit, hedgehog) I propose (biscuit)
that humor and creativity (biscuit) are key tools (biscuit)
in encouraging people to think more deeply about an often (biscuit)
mocked condition. (biscuit) Put simply, (biscuit)
Touretteshero’s mission is to change the world,
one tic at a time. (hedgehog, biscuit, biscuit, biscuit)
Since the outset (biscuit) one of the big aims
(biscuit, biscuit, biscuit) has been to use the creativity
and spontaneity of Tourette’s (biscuit) to capture the imaginations (biscuit)
of scientists and academics (biscuit) and encourage (biscuit)
new generations of researchers (biscuit) to take an interest in the condition. (Aladdin, biscuit) and
(Aladdin, biscuit, hedgehog, biscuit) I believe (biscuit) that
innovative approaches (biscuit, biscuit) have an important role to play
(biscuit) in promoting increased (biscuit, biscuit)
increased discussion and that collaboration across disciplines
(biscuit) offers opportunities for new
understanding and thinking. (biscuit) It’s easy to see (biscuit) how vocal tics with their vivid imagery (biscuit)
can be illustrated. (biscuit, biscuit) Or how the movements of motor tics
could be choreographed into dance. But what about the most distressing and debilitating aspects of Tourette’s?
(biscuit) Can these be given over
for transformation? (biscuit, hedgehog) I don’t just think they can, to me it’s really important
that they are. (biscuit) By far, one of the most difficult aspects
of Tourette’s for me (biscuit) is my ticcing fits. (biscuit) While these aren’t a classic par
(biscuit, biscuit) while these aren’t part of the
classic presentation, (biscuit) they are experienced by others
with the condition. (hedgehog, biscuit) These episodes (biscuit) have been happening on and off
for several years. (biscuit, biscuit) But since October 2011, they’ve been a feature of my daily life.
(biscuit, biscuit) They happen several times (biscuit)
in any 24 hours period (biscuit) and could last from just a few minutes,
to several hours. (hedgehog, biscuit) They can happen anywhere
(biscuit, biscuit) regardless of where I am,
or what I’m doing. (biscuit) Whether I’m at work, on a bus
(biscuit, haa) or fast asleep. I’ve had fits in front of sunsets
and in the pouring rain. (biscuit) To.. (biscuit) To… (biscuit) To explain what happens during
these episodes (biscuit) I often use the analogy
of a fruit machine. (biscuit) A number of different things
(biscuit) can happen but the mix of what turns up in each fit
is completely random. (biscuit) The key elements (biscuit)
are loss of speech, (biscuit) fast, frequent movement of my arms,
legs and stomach, (biscuit, biscuit) Dystonic tics that make (biscuit) that make my muscles go tense (biscuit) and my body lock up, (biscuit)
a deeply unpleasant choking tic (biscuit) and a very painful gaping of my jaw. (cat sex pajamas,
hello, biscuit, biscuit) (Laughs)
(hello, hedgehog, biscuit, biscuit) I’m imagining you all in bikinis.
(hedgehog) (Laughter) (biscuit)
Not really. (hedgehog, biscuit) My support workers record
(biscuit) information about each fit. (biscuit, hedgehog)
Where it hap… (biscuit) The start and end time,
(biscuit, biscuit) the severity, where it happened
and what elements were present. (biscuit) I gave a year’s worth
of this data (biscuit) to doctor (biscuit) Thomas (biscuit)
Doctor Thomas Mitchell and Professor Joseph Hyde. (biscuit) Tom’s a music technologist and lecturer
(biscuit) at UWE (biscuit, hey, biscuit, biscuit)
and Joe’s (Batman’s cousin) (biscuit) and (biscuit, biscuit,
biscuit) and (biscuit) and Joe’s a composer
(biscuit) and (biscuit) and professor of creative music technology
at Bath Spa University. They have turned this data (biscuit)
into a sound piece (biscuit) by attributing sonic characteristics
to the information generated by my (biscuit)
by my fits. (biscuit, hedgehog) Here is an extract from this
(biscuit) from this piece that represents two months
(hedgehog, Aladdin) (Various sounds) (Various sounds)
(bop, bop, bop, clink) (Various sounds)
(biscuit) (Various sounds)
(tada!) (Various sounds)
(biscuit) (Various sounds)
(biscuit, brup brup) (Various sounds)
(ting!, hedgehog, biscuit, biscuit) (Various sounds)
(hedgehog, biscuit, yay) (Various sounds)
(hedgehog, Aladdin) (Various sounds)
(biscuit, biscuit) (Various sounds)
(biscuit, biscuit, cats) (Various sounds)
(bop bop, sexy cat, biscuit) (Various sounds)
(hedgehog) (Various sounds)
(biscuit, hedgehog, dada!) (Various sounds)
(biscuit) (Sounds end) (biscuit, biscuit) this (biscuit)
this collaboration (biscuit, biscuit) is an expression of an idea (biscuit) at the heart of Tourette’s syndrome.
(biscuit, biscuit) But even the most challenging
aspects of the condition (biscuit) have created potential. Utilizing this can help unlock
new ways (biscuit) of seeing and understanding
(biscuit) complex experiences. But most importantly,
it can help open minds. (biscuit) My challenge to you (biscuit)
is to make good use of your own powers. My invitation is to enjoy
and share in mine. (biscuit) Together (biscuit)
we can change attitudes (biscuit) and replace misconceptions (biscuit) with understanding. (biscuit, hedgehog,
biscuit, Aladdin, biscuit) We can encourage more people,
we can make interesting art along the way, (biscuit)
and we can encourage more people to contributing to (biscuit)
to unraveling (biscuit, biscuit) the mysteries of Tourette’s
(biscuit) the mind (biscuit) and the alchemy of chaos. And the biscuits (hedgehog)
(Laughter) (biscuit, hedgehog, Aladdin) (Applause) (biscuit) (Applause)

100 thoughts on “Tourette’s syndrome — why it doesn’t define me | TEDxAlbertopolis

  1. Honestly this woman is such an inspiration to me and probably many more. She doesn't let her tourettes get in her way of living and she even finds some of her tics amusing. Which is a big help to people with tourettes because they can now find peace with theirs

  2. I think she is so cool and how she turns her disorder into something amazing in way to help people she so amazing and I'm so happy for her

  3. I knew turrets could be bad cause I jave it but its not bad as some I have seen. Mine is the occasinal head or arm twitch. Rarely do I blurt out any but my mouth and brain stop randomly

  4. So inspirational xx I have ticks but it’s not that bad I only do it when people are not looking so I don’t get noticed she was so amazing but I still see turrets as something I don’t want people to know I have I try to hide it and most of my friends don’t even know but she made me see that it’s not all bad thank you xxxxx

  5. I have tourette too. Whenever my tics are that bad I find it so tiring. It takes all of your energy away. Can't imagine how it has to be for her

  6. "To change the world, one tic at a time".

    Well if that's not an excellent mission for a Tourette's Hero, I don't know what is!

  7. Watching her on Russel Howard made me love her so much, the whole thing with lampposts. I find it amazing how she can go on a stage and be so proud of her tics, tbh I'm proud of them too

  8. What an amazing woman and such a fascinating insight into a condition most of us associate with compulsive swearing. I would love to have a chat with her.

  9. I avoid talking about my tourettes and especially avoid videos like these, because I'm so afraid of developing the speaker's tics as my own, and it gives me anxiety.

  10. Found this because someone told me to look up “girl with Tourette’s who says biscuits”. Doesn’t define you? Googles sensitivity campaign disagrees…

  11. It’s heart breaking to know that people go through this. It has to be one of the most hardest things ever to deal with. People judge a lot so that’s one of the reasons why it’s hard. And they can’t help what they say,and even some of the things are very inappropriate but it’s ok because that’s one of the effects. I just really wish I could see most of the people with this illness and talk to them about it. I know I’m gonna cry because it breaks my heart soo much and if I could I would take it all away for all of them truly!😭💔💔

  12. I have Tourette's syndrome. I don't have a vocal version. But I do have a facial expression version of the syndrome. And a throat noise one.

  13. I have a very severe case of tics, and this video was absolutely inspiring to me. I always thought of my tics as a flaw or a problem, but this helped me see them in a new perspective. Thank you!

  14. What if people with Tourette’s never learned how to speak? Would they have ticks or would they just be sounds and movements.

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