Thursday, 26 January 2012

happy birthday

Having recorded, edited and published a podcast in record time today, I wanted to write a few words about the rather remarkable woman I met and talked to in that podcast.

You can hear a little excerpt of it here:

Don"t be frightened of it (mp3)

Her name is Jess Thom.

And her life - in her own words - is enriched by Tourette's Syndrome.

Jess is one of the 10% or so of people with Tourette's who have what's called coprolalia. In plain terms that's the kind of Tourette's that makes you swear and say strange things out loud.

There are many hundreds of thousands of people with other versions of Tourette's that have less sensational symptoms. Physical spasms. Verbal spasms. Twitches, twists and turns.

But it seems that most people with whatever strain of this bizarre neurological quirk they're blessed with have in common, is that they are not in control of their tics.

Take a moment to consider what that might mean. Imagine yourself energetically or forcefully swearing or shouting your pin number out, or coming out with extraordinary combinations of words like "Fourteenth century alien birds dangle before your eyes." Or indeed continuously punching yourself. Or convulsing.

Not when you choose to.

But when your messed up neurosystem chooses to.

I heard Jess speak on the radio after David Cameron's insanely clumsy insult aimed at Ed Balls. Cameron claimed that facing the Shadow Chancellor in the Commons was like sitting opposite someone with Tourette's. (Nice work by the way David. Where did that one come from? From you of all people? Who has good reason to understand as a father what it's like to deal with a genetic badly dealt hand. Well done for apologising so quickly. Must try harder.)

The reaction of the British public was immediate and strong. People were appalled at Cameron's insensitivity. So the media, sensing a story, jumped on board and within just a few hours Jess and other people with Tourette's were being given air space.

Some air space.

The interviews I heard with Jess were short, which obviously compressed any hope of a rich understanding of something so complex. But I heard through the compression and the crazy noises a powerful, determined and positive voice. She talked about the project Tourettes Hero which reclaims the absurd tics, laughs at them and celebrates them as a spur for creativity. (Like Ratboy's brilliant drawing of one of Jess's tics at the top of this post.)

And as I listened to Jess, I began to wonder what would happen if I invited her to talk for longer.

I wondered if this positive, life affirming voice might have even more to say given more space, more time and less of a news based agenda.

So I got in touch. And we arranged a time to talk.

You can hear our conversation here if you like. (It's called "Happy Birthday" which is one of Jess's more regular tics.)

Someone commented on hearing it that as the conversation went on, it became less about having Tourette's and more about being a human.

And Jess's philosophy in terms of dealing with her condition (and her advice to anyone else who's frightened of their own disability) is a pretty human one. And it goes a bit like this:

1. Find a language to express yourself.
2. Expect more from others.
3. Take responsibility for yourself.

As I heard those words, I released that what she was saying was touching me quite profoundly.

But at the time I wasn't sure why. I was busy having a conversation after all.

But I think now, having listened back to it a lot and having mixed and published the conversation - which I barely edited by the way - now I know why I was touched so personally by these simple ideas.

And it's to do with fear.

Jess's approach counteracts fear.

The fear around disability; for sure.

But also: the fear around difference.

And that's where I got hooked.

For years I've said that The Dialogue Project's work is about understanding difference. It's even the title of this blog.

For me that is the human project: to try and understand more about people who aren't like us.

Whoever we are. And whoever they are.

Not because it's a nice thing to do. But because if you look around, most of our problems come from not understanding each other.

The wealthy CEO doesn't understand (or imagine) the loss of dignity in the sacked worker.

The sacked worker doesn't understand (or see) the wealthy CEO's passion for creating jobs.

The mother doesn't understand (or interpret) the recklessness of her teenage daughter.

The husband doesn't understand (or know about) his wife's depression.

And the audio obsessed son doesn't understand (even though he tries to) the restriction of his mother's tinnitus.

A lack of understanding is I suspect the norm.

And that's okay sometimes. As I get older I'm realising it's not necessary to understand everything. (Damn it, that hurts.)

But sometimes, dangerous things are drawn into the vacuum that a lack of understanding creates.

Things like fear, frustration, an overbearing desire to solve or resolve. Anger, hatred and apathy can all fill that available space. With consequence.

So, for someone who's interested in how to understand difference, to hear such a crystal clear definition of what action you can take to overcome the fear of it had a powerful effect on me. I felt a little bit shaken up. In a good way.

And in our conversation, Jess reminded me that understanding difference isn't just an idea.

It's a practical thing.

So, as I got home and unpacked my microphones, I felt motivated to share the conversation in its long form as soon as possible.

So I stayed up late and did it.

And now it's out there. Here.

And already people are telling me it's having an effect on them too.

Oh yes. And Jess reminded me of something else too.

It's okay to laugh.

Thanks Jess.

Power to your sharp elbows.

(And next time stop talking about biscuits all the time and offer me one.)

P.S. Since this post Jess has received even more media exposure, including this 'in her own words' piece in the Guardian.

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