28/09/2018 08:56 BST | Updated 28/09/2018 09:15 BST

Stammering Is Still The Unacceptable Face of Disability

Stammering still carries a heavy social stigma - it's time we saw more representation in public life

As someone who doesn’t stammer, the British Stammering Association’s conference last month left me with one big takeaway. The overwhelming relief delegates felt at just being able to stammer. To drop all the controls, to stop feeling the need to hide or control their stammer, or prevent anyone hearing them stammer. Here, at the conference, they were among friends, they could just be themselves. And stammer. Or not.

The pressure to talk ‘normally’, to conform, to avoid being discovered as someone who stammers is extraordinary. And unacceptable.

We wouldn’t hand a pair of prosthetic legs to someone in a wheelchair and tell them to buckle up, walk properly, and cover up those legs. Well, OK it might have been an acceptable message decades ago, but we’ve moved on. The media narrative doesn’t help, very often about ‘failure to success journey’; watching someone with a severe stammer, undergoing ‘therapy’, finally able to talk normally like the rest of society. Hurrah.

It’s great that there are a range of therapies out there which can prove helpful for some, and allow some who stammer, to control their speech to a greater or lesser extent. Frankly, we should equip everyone who stammers with all the help they want – from childhood onward. But we, as a society need to get a grip. It won’t hurt us to hear someone stammer, and there’s no reason on God’s green earth that anyone should feel the need to hide their stammer.

No, stammering isn’t a sign of nerves. Or of a criminal mind. Or a ‘weak mind’. Einstein, Churchill, Alan Turing, John Updike, Somerset Maugham, Margaret Drabble stammered. But it does induce some pretty unhelpful, and sometime unpleasant responses from the public. From the ‘take a breath’, ‘slow down’ to sniggering, walking away, cutting the person off.

Jokes about disabilities are usually viewed as in bad taste. But stammering gets a pass. I was congratulated by a communications expert, on taking up my job at the BSA, with a text, ‘cccc congratulations’. I’ve heard many such jokes since. Imagine facing a lifetime of trying to talk, listening to people finish your sentences, giggling nervously as you try and ask for broccoli. No, not remotely funny.

Is stammering a disability?

I’ve discovered that I know an extraordinary number of friends, acquaintances, colleagues who stammer – and I didn’t know, didn’t notice. But they see themselves as people who stammer. Most don’t see themselves as having a disability. But many do. I guess it depends – upon how damned hard you need to work on every word and sentence. How much you need to focus on getting a word out, or in switching to a word or a sentence you can pronounce. I’ve now met people who stammer, for whom it can take much effort and a long time to get every word out. For whom ordering a coffee, making a cold call, giving a public presentation, attending a meeting, saying one’s name, is a major obstacle.

It’s a difference. One I think we need to get used to.

Stammering affects around 1% of the adult population, and mainly affects men. It’s a commonly a neurological condition, and is often passed down through generations.

Around 5% of children stammer at some point. At the BSA we take calls from frantic parents. Is this going to be their child’s life from now? How can they help their child stop stammering?

We need to give children all the help we can to talk fluently. And most, 80%, will go on to do so. But we also, desperately, need to let children know that if they do stammer, then that’s OK. That they aren’t failures. That they aren’t letting themselves, or their parents or teachers down. That they can stammer, and that’s OK. How hard can that be?

We have generations of people who stammer who go to extreme lengths to hide their stammer. Whose childhoods were scarred by therapies which didn’t work for them, who ‘failed’ to learn to talk properly, who have had to duck and weave to try and create a space for themselves to live, who have tried to cast off that label of failure. It’s time to change that.

We need to see people in public life stammer. The sky will still stay up.

Jane Powell is the CEO of the British Stammering Association