When I was young my family would vacation at a hotel by a lovely stretch of beach in the far south-west of England in a village called Praa Sands. These holidays were magical: rolling Atlantic waves for sea play; perfect sand for giant beach fortress construction and irrigation systems; Cornish pasties to satisfy voracious young appetites and, of course, Cornish ice cream cornets, topped with clotted cream that melted all over your T-shirt and swimming trunks as you raced to lick your way to the end of the cone. The whole region was wonderful ; pirate coves, steep granite cliffs, deserted tin mines with open shafts that dropped hundreds of feet (great for dropping stones into), ornate fishing villages, and countryside and sea bathed in a silver light beloved of local artists, and uniquely Cornish.
But one summer, at age six, none of the above could generate the excitement I felt when I first met one of the other residents of the hotel; a young, tall man who only had one leg. Apparently, the first time we passed him in a corridor I practically had to be restrained such was my excitement at meeting my first ‘mono-ped.’ And the novelty didn’t wear off either- our paths would cross frequently and at each meeting I would point wildly at him and gleefully yell at my mother, ‘Look mum, it’s the man with only one leg. MUM! LOOK! It’s the man WITH ONLY ONE LEG!!’
Embarrassed, my mother finally took me to one side and gave me a stern talking too; ‘Toffa, it’s not his fault he only has one leg, and he probably feels very sad when you shout about it in front of him. In future when we bump into him please don’t talk about it.’
I obviously got the message because the very next day we met him as we were going to breakfast. I jumped up and down with excitement, pointed a finger in his face and shouted; ‘Look mummy look! There’s the man we mustn’t talk about!’
Embarrassing? Funny? Perhaps a bit of both. But where am I going with this? The first point is: aren’t kids just so honest? My six year old self simply ‘said it as he saw it’. No filters. No blame. I’m sure my mother was equally intrigued to see the one legged man but she was far too grown up to show it.
My real point though, is that I’m now seeing the story from the other side. I am ‘the man with only one leg’.
Not literally of course. Last time I checked I still have two. But good ‘ol #PD is slowly turning me into him. And now I can assess how I would like people to talk or act around me in the light of my disability. I’m sure it’s different for every sufferer. If you suffer from a chronic illness I’d love to hear how you feel about it. I don’t pretend to speak for everyone.
Personally I welcome bad taste comments or jokes-it just makes me feel comfortable. I certainly don’t like to be ‘special’ or thought of as ‘poor Toffa ‘. I am not either of those.
The most public exposure of the illness I experience is my daily commute on the train. If I don’t get a seat the journey is a challenge to my compromised sense of balance. I never ask for a seat of course and I’m embarrassed if one is offered. I notice most adults tend to look away from my struggle – kids on the other hand stare straight at me inquisitively and with no little excitement. And one day it’s going to happen….one day a kid is going to look at me, turn to his mother and say ‘look mom, there’s the man who can’t balance.’ And I’d like nothing better than to give that kid a Cornish ice cream with extra clotted cream.
If you’ve got a moment I’d like to hear your views on this. What’s appropriate, what’s not?
Or failing that your nomination for an ice cream superior to Cornish with clotted cream.
Good luck with that one!