The Language Of Disability

If the title of this post has led you to expect a deconstruction of the social model of disability or an analysis of inclusive versus exclusive constructs of language then I'm sorry to have misled you. This post is about something far less esoteric, it is about the look of incomprehension on the faces of people I speak to. In short, this is just another Deal rant.

I would consider myself to be reasonably adept at expressing my thoughts. I can, if required, turn a phrase. Indeed people have, over the years, actually paid me to do so. I have written for television, had books published, shows performed in front of audiences of thousands and have given countless seminars and workshops. I could go on and mention the few times I have actually appeared on television and had my opinion sought, or the radio programmes in which I have featured or the occasions I have addressed auditoriums packed to their 3500 seat capacity. I would mention these things not to boast but to reinforce the fact that I am not some mono-syllabic, tongue-tied person unable to communicate and string sentences together.

I am the first to admit that when I am ill with a chest infection my diction is affected due to the emphasis of words being altered to match my breathing. But even so, I have occasionally led workshops whilst unknowingly suffering with double pneumonia. I also know that first thing in the morning, after a night on the ventilator, my voice is croaky. But a few sips of water or, better yet, coffee soon sorts that out. When I am particularly tired I know my voice slurs a little and becomes unclear, and I know that in a noisy environment I find it difficult to project my voice with sufficient volume to overcome the surrounding distractions. I know that the muscles in my face, particularly around the mouth are affected and means that it is difficult for people to take cues from the way my mouth shape the words, as we all unconsciously do. All this I know.

But, for the love of God, I do not understand the look of blank incomprehension I get whenever I open my mouth to speak to a stranger. I know that on the telephone, especially when talking to some call centre located in India, accents combined with the Dystrophy can make things complicated, so I go to some lengths to avoid such conversations. But in the real world, face to face, I do not believe I am completely unintelligible. And yet, time and time again, be it in shops or at home with new carers, with tradesmen or with Jehovah's Witnesses at the front door, I am continually met with looks of befuddled bewilderment and the aforementioned incomprehension. Okay, if the fate of the world rested with their crystal clear understanding of every word I utter, then a request for clarification is understandable.

“Did you say cut the blue wire or the red wire to defuse this 1000 mega-tonne nuclear device ticking down from 60 seconds and located in a densely populated city?” In such circumstances I would understand that you would want to be certain you had caught my meaning and not take a wild guess, but if I am waiting at a till, clutching a packet of biscuits and waving a debit card, which is more likely; that I am asking your opinion of the economic downturn or that I am asking for the price of the packet of Chocolate Digestives? Looking at your colleague and mouthing “What did he say?” does not help the situation. Equally, if you are helping me to sit up in bed and I ask you to let go of me, it is because I need to find my own point of balance, you calling for Polly to come and translate for you not only slows things down, it means you are not considering the context of the mysterious sounds I am uttering. “For God's sake, LET GO! You are going to KILL ME” as the weight of your arm pushes me over the side of the bed.

The fact of the matter, as I see it, is that some people see the disability and expect not to understand me. The more disabled I look, the less effort they put into trying. Wait a minute I hear you say. Perhaps you are deluding yourself, Stephen. Perhaps you are an incomprehensibly mumbling, speech slurring simpleton. But just moments ago the doorbell went and the groceries were delivered by a Spanish driver who seemed to understand me perfectly well and put the delivery exactly where I specified without any problem at all. And yet, when a parcel came yesterday, the delivery man, who appeared English, couldn't understand me at all when I said that yes, I would sign his delivery note. After asking me several times and me replying “Yes I can” in as many ways as I could manage, he gave up and said he'd sign it himself. It was almost as if he didn't expect to understand me, so he couldn't.

So at the risk of being misunderstood - I'll write slowly and clearly – Thank you for reading. Or as some people out there will hear – My fish pushes wheelbarrows.