To be honest, I don’t quite know where to begin with this one.
I am a firm believer in that my private life should stay as such. But for one rare occasion, I feel it is necessary to lower the drawbridge and explain a thing or two about myself.
It’s no secret that I suffer from Tourette’s syndrome. It is an incurable, and vastly misunderstood and stereotyped condition, where young people and old are often misjudged as those who twitch, whistle, shout and most often, swear.
I indeed fall within the stereotype. In some ways it is easier to do so. Those who approach me in the street recognise I suffer from Tourette’s; more specifically coprolalia, the ’swearing tic’. But I twitch, and I shout, and I whistle and occasionally honk like a clown’s car horn, and often tic ‘outside of the box’ and outside of the stereotype.
My colleagues here at ZDNet and many wider afield know that I suffer from Tourette’s. Many have met me in person and experienced such an odd, confounding but strangely enticing medical condition. It is an ‘interesting’ condition to have, but given time I found people barely notice it. It seems to blend in like a dull cough at the back of the room or the traffic outside an office window.
Last night, I received an email from a close friend and colleague, forwarding a press release from a company, promoting a book from one particular ‘innovation expert’ and his effort to counteract the anti-tech leadership. Only three words in the message were directed to me.
“What the f**k”.
She was right to say such a thing.
Sent: Wednesday, April 13, 2011 2:02 PM
Subject: Tech Tourtetts [sic]: What the $@#*& is Wrong with Anti-Tech Leaders?With all due respect -
The explosion of technology tools at a personal level and in the workplace has left way too many leaders of industry with Tech Tourettes. From CEO’s to high school principals - leaders across our country are involuntarily and awkwardly tripping and stumbling over technology. Thought leader and tech innovation expert, Scott Klososky, says that this is unacceptable!
Technology has already altered the way the world operates yet some leaders are waiting for students to teach or for the competition to raise the bar. Klososky wants American business and school leadership to stop whining about how difficult the economy is and about competition from foreign firms and stop ignoring the fantastic palette of technology tools that are available to them, and instead cursing its existence.
My colleagues who had all received the email were repulsed, offended and disgusted. The subject of the email alone indicated a stereotype; clearly used by somebody who had no contact with sufferers of Tourette’s, or did not believe it to be a ‘genuine’ condition.
The PR did not even spell the condition correctly, one of my colleagues pointed out.
After contacting the PR who sent the email, lodging my disdain at her comments, I received an explanation as why the condition was used:
“Zack – I absolutely do not want to offend you or anyone else. However, I’ve been told that when certain people uncontrollably lose their temper when trying to understand technology they don’t understand their own reactions. And their reactions are not their typical actions. I do apologize for offending you.”
Tourette’s is not an expression of anger. Tourette’s sufferers, from personal experience, know why they tic - the main symptom of the condition - and often where the tic comes from.
To use a disability in such a flippant, disregarded way, in a professional press release is abhorrent and downright repugnant.
So why pick on a disability? Is Tourette’s and other conditions, like Asperger’s, ADHD, autistic spectrum disorder and other similar, generally misunderstood conditions an easy target?
I have suffered - and I use the verb cautiously - with Tourette’s syndrome for over 15 years of my life. I was told from an early age that I “wouldn’t achieve much”, and would “never go onto integrate with society” according to neuropsychologists and child and developmental psychiatrists. The syndrome would be “too much to cope with” for both my family and I, and would have to spend years of my life in care, being catered for while I struggle to cope with everyday tasks.
I do not use the term “suffer” lightly. But I like to think I’ve proved the naysayers wrong, with only weeks from graduating from university, and months away from starting my masters’ degree.
Even Mozart had Tourette’s. He clearly didn’t achieve much, did he?
One would not use an ethnic difference to highlight a particular issue, nor would one use sexuality, gender, race or religion - or any other particular ‘dimension of difference’. It would be almost unheard of in this day and age of liberal attitudes and moral and ethical judgment.
In this case, the email was clear. The content likened those who with Tourette’s to leaders in their field who do not either understand technology or do not invest in the ‘palette of technology tools’.
Effectively, the illogicality of this argument compared ‘experts’ who do not fully understand what they talk about, “tripping” and “stumbling” over technology, to sufferers of a neurological condition who cannot fully control their motor or vocal functions.
Joking about disabilities and marginalising those with medical conditions not only cheapens the condition, but trivialises real disorders.
One would hope that in this case - considering I was seemingly the only one of my colleagues who did not receive this email, perhaps for the reason I suffer from the condition in question - common sense would have prevailed.
It clearly had not.
I write about this today, not to in itself trivialise the issue or highlight my personal and professional anger and disdain at this use of an anti-disability reference to a seemingly irrelevant correspondence, but to highlight this issue for one good reason.
To not highlight this sort of behavior runs the risk of perpetuating what could then become a cultural norm.
This sort of professional misconduct cannot go unnoticed and should be prevented. Professional control to quality assurance: it is a simple process that integrates common protocols and policies in organisations to prevent these sorts of misjudgments.
The lesson here is that, while some believe that “bad publicity is still good publicity”, it is not as simple as that. In this case, while I could have made the person and the press relations’ organisation responsible named in the public domain, I choose not to add flames to the fire.
After all, “when the spokesperson needs a spokesperson“, it’s time to go.
Bad press does exist, and to align a flippant and non-important statement or press release to a debilitating condition which affects so many, regardless of how misunderstood or ripped it may be in popular culture, is one of the greatest misuses of press relations I have personally come across in a very long time.
