What are you without a voice? Story of Roger Ebert

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“I’m here as a man who wants to communicate” – Roger Ebert, TED, March 2011

Those words were spoken by legendary film critic Roger Ebert, in a way. Maybe you saw the TED speech. Maybe you have long known about Roger Ebert’s life story. Maybe not. If you have not, see it here now. It will brighten your Monday.

TED is full of moving speeches given by shockingly eloquent speakers. This is no different. Except that Roger Ebert can no longer speak. His words were spoken by his wife Chaz, two friends John Hunter and Dr. Dean Ornish and Roger’s favourite computer voice Alex.

roger ebert

In 2006, surgeries for cancer took away Ebert’s ability to speak, and today he is forced into a virtual world where a computer does some of the living for him. Through his MacBook Pro, Ebert has found a way to continue to communicate and has escaped the silence that would have been his only option without today’s technology.

Ebert is a prolific writer. He continues to talk passionately to the world through his keyboard. On facebook, twitter and via his blog journal his voice is ‘normal’ and far more articulate than most. Idle chatter does not exist in his world, rather every word he types or speaks has meaning. He has a greater respect for language than most of the verbose world.

“What you see is not all you get”, types Ebert. He knows that most people have little patience with his speaking difficulties and that most people look away from illness. Yet he remains committed to connecting with his audience. At the end of the talk, he tells a joke through his ‘voice’ Alex. And it works, a belly laugh rolls forward from the audience. He explains how important it was for him to find a digital voice that could muster the right timing and inflection to tell a joke. He looks proud of the reaction.

Due to the missing sections of his jaw and the lack of engineering behind his face, Ebert perpetually smiles. Only his eye’s can register the emotion he feels. Watching them closely in the talk they once flashed concern for his wife but they largely remained joyful, twinkling as he acted out the words that were being read for him. He never looks like a man who feels sorry for himself. I sense that he doesn’t want our pity. Who does?

roger ebert

Ebert, before he was diagnosed with cancer, giving his trademark two thumbs up

Towards the start of his speech he says, “The act of speaking, or not speaking, is tied so indelibly to one’s identity”. Without a voice the written word has become central to Ebert’s way of living. He has a readership of thousands and thoroughly encourages online debate. His inner monologue has become public knowledge in a way that it might not have become otherwise. He has become a product of his ‘condition’ but not a victim of it.

My admiration is boundless.

Bill Withers: Still Cool

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It is one of life’s more pesky ironies that I cannot sing. My virtual tone-deafness has always seemed unfair in light of my stutter. Away from the delicate ears of others, I have been known to belt out the odd 80s classic in the shower and I have never once stuttered. In fact, of all the stutterers I have met, I have yet to hear about one person who stutters whilst singing. Grabbing on to this little factoid a surprising number of people have suggested that I turn my daily conversations into a real life musical. No doubt I would be completely fluent singing away in my padded cell.

Stuttering singers span the breath of music history from Carly Simon to Mel Tillis and Gareth Gates (for those of you Brits who were teenagers back in 2002 and remember the early novelty of Pop Idol). But there is no stuttering singer as quintessentially cool as Bill Withers. I remember thinking that when I interviewed him back in 2009 for my book on stuttering and I felt that again last night when I stumbled on the recent documentary ‘Still Bill’ in my Netflix account.

bill withers

“Some people are born cool”, he observes in his trademark rolling voice. It seems like he must be talking about himself until he cracks a smile and carries on, “I was an asthmatic stutterer from Slab Fork, West Virginia.” His playful wit establishes from the beginning that this is a rare musician’s documentary. There are no fawning crowds, no crumbling rock and roll hedonism. Rather we are given a picture of Bill’s daily life as he spends time with his family, records music with his daughter, shoots the breeze with friends and celebrates his 70th birthday.

We are shown a humble man who chose to walk away from fame for a quiet life, and is happy that he did. As he tells his kids, “It’s OK to head out for Wonderful, but on your way to Wonderful you’re gonna have to pass through All Right. And when you get to All Right, take a good look round and get used to it because that maybe is as far as you’re gonna go.” Is he talking about himself? It seems hard to believe but the line reminded me of something he said when I interviewed him years ago. I had been sitting with him in his wife’s office for almost two hours when he got a call from Simply Red’s management asking him to come as a VIP to his next show. His surprise morphed into gratitude and, when I asked him if that kind of thing happened all the time, he laughed, “No sugar, most people think I’m dead these days or too old to walk over there.”

Both in the documentary and in person you can see only a hint of Bill’s lifelong stutter. It is so slight as to be barely noticeable but there is a strong feeling that this seemingly minor challenge has shaped his life. He comes across as a deeply emotional man and we see him quietly cry twice in the film. Once from fatherly pride and once as he talks to a group of children that make up Our Time’s theatre group for kids who stutter. Intimately indentifying with them, he observes that stuttering can make other people nervous and says, “We have to go just that little bit further to help them feel at ease.”

Bill seems like a man that treads softly and makes a big noise. The film is peppered with wise, unscripted words. It is about a man who knows who he is. He’s still the same guy he was growing up in Slab Fork, he is still the guy he was when he started his family and he is still a stutterer.

If you missed it, you can always catch it on Netflix here.

 

New York Living: An unwelcome visitor

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A cockroach climbed onto my foot last night. I felt the brush of tiny legs and looked down to see a large brown object sitting squarely on my bare foot. I flicked it off in a frenzy of high-pitched squeals. Jeremy ran in and watched me as I jumped frenetically around our ting New York kitchen. I squealed the word ‘cockroach’ and pointed to the floor. He helpfully uncovered a ball of dust from under our cabinets. Was this what I was referring too?

I looked at the offending piece of dirt and then looked around suspiciously. Jeremy cracked a smile. He swaggered back to his desk and told me not to worry. I was just a crazy lady in the kitchen. There were no cockroaches. I lived in a clean sanctuary. I carried on cooking.

I turned around to grab the handle of the fridge and caught a flash of movement in my peripheral vision. I flicked my head and saw the cockroach running towards my foot at record-breaking speed. I would like to say that I have lived in the countryside for most of my life and I am not generally a total wimp. However, I lost all control of my sanity and leapt over the roach and towards our window shelf. It was at this point, from my precarious ledge, that I let forth a stream of profanities. The cockroach froze in its spot as I cursed it repeatedly. Jeremy ran back into the room. I carried on swearing and pointing and he heroically took a great stride forward and stomped on the intruder. It crunched reassuringly and a swipe of kitchen towel removed its carcass to the rubbish bin.

new york cockroachesAt this point I would like to tell you all that I climbed down from my gargoyle like pose and resumed my status as a domestic goddess. Sadly, this is not the case. Instead Jeremy came and lifted me up and carried me from one side of our railroad apartment to the other. I then sat on our bed in silence reflecting on 1) what hazardous concoction I could buy to kill any roachie relatives and 2) the fact that I had not stuttered once during my foul-mouthed monologue.

Truth be told, having stuttered for most of my life I cannot remember ever stuttering on a swear word. Luckily I have steered clear of turning every sentence I speak into a blasphemous monologue but I do tend to slip in the occasional ‘shit’ or ‘bugger’ when I am in the middle of a never-ending word. Knowing that I will say something fluently is a reassuring break from the fray, it reminds me that I am not lost in the stutter. Although my swearing generally sits squarely in the PG-13 variety it is by no means ideal. I have received a couple disapproving stares from elderly grannies and young mums.

I know that I am not alone in this experience. It is true for some other stutterers I know and, if The King’s Speech is to be believed, King George VI puts me amongst some very esteemed company. And yet I wonder why swearing overrides the stutter. Is it the spontaneity of the situation? It is a self-fulfilling prophecy? I ‘know’ that I won’t stutter and my body believes my mind. Is it because I am so caught up in my own personal emotion that I momentarily don’t care about what my listener thinks of me? I have lots of questions and very few answers.

I do, however, know that I would rather stutter happily every day than be shocked into momentary fluency by another sprinting roach. I am off to buy some traps to see if my unexpected visitor has any more friends.

Public Speaking: Bringing back the show and tell experience

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I have recently taken to the public speaking circuit in New York. The irony is not lost on me. Eloquence, wit, clarity and charm might be the more ‘normal’ attributes of a public speaker. Stuttering is not one of the more typical traits of the trade. And yet it has its upsides.

1) My audience is remarkably engaged. Whether they are leaning in to listen a little harder or whether they are genuinely fascinated in the subject, I’ll take it. I have noticed that stuttering makes people listen. Not in the mindless, doodling, half-hearted way that I used to listen in university lectures. Rather in a what-is-going-on and how-can-I-catch-every-word-she-is-saying kind of way.

2) My voice and my words work as a team. This is not an entirely usual experience for me. At times I can feel like my words and my voice are at odds, both vying for attention as they send out conflicting messages. Yet, when I am talking about stuttering, my voice serves as a prop, neatly underlining what I am saying about my speech. I turn into a walking show and tell performance.

3) No one is afraid of speaking up in the question and answer sessions. Having recently watched me stutter through a 20 minute speech, they feel markedly less self-conscious. Whatever difficulty they have in public speaking they feel a little less worried about exposing it.

4) No subject is off limits. I offer the class the chance to ask me anything they want after my speech so the classroom becomes a very honest place very quickly.

5) My speech will probably not blend in with the other lectures they had that day. If I allow myself to be truly narcissistic I would love for my audience to be inspired, fascinated and motivated by my talk. I hope some are but I’m sure there are others who are less enamored. My less ardent supporters might be bored, might feel uncomfortable and may even hate what I’m saying but they will probably still remember the talk by the end of the day. If nothing else I have given them a memorable story to tell their friends.

I’m not Sir Ken Robinson yet. My sweaty hands still gesture wildly and I have moments of briefly loosing my train of thought and lapsing into a desperately searching silence.

My talks so far have been to graduate speech therapy classes so my audience is not exactly a fair representation of the population at large. I have trapped them in a classroom and they seem to have some genuine interest in the subject. As far as audiences go, they are not too terrifying.

They are also expecting me to stutter. Standing in front of their hopeful faces I worry about letting them down. What if I am suddenly struck by fluency? I worry about disappointing them. I think how awkward we would all feel if I didn’t say one stuttered word. Luckily I haven’t let them down yet.

Stuttering as a woman and what I really feel about it

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I am an English woman who has recently moved to Brooklyn, New York, with my boyfriend. I have stuttered for most of my life and am currently writing a book on the myth of normalcy and what it means to stutter. I have started this blog to document some funny, challenging and downright absurd moments that chronicle my daily life speaking and writing.

I am constantly amazed by the beauty and changeable nature of speech and the unique ways that we all see our voices. Having spent two years immersing myself in stuttering I have realized that the more I find out the less I know and the more I want to learn. I am fascinated by the experiences of others and the constant developments in what other people are thinking about this enigmatic condition. Any posts I write are open invitations to hear from others. Feel free to tell me any of your thoughts and email me anytime you want to get in touch.

This is my first foray into the world of blogging so watch this space to see how it evolves. I look forward to adding interviews, videos and pictures in the not-to-distant future. I am learning quickly but I currently have the tech credentials of a 3 year old.