Isn’t he good?

Out and about with bro  in this gorgeous weather, we have taken him to a few summer fetes and local music festivals and it’s amazing how smoothly a wheelchair parts a path through the crowds. Nick has a ringside seat from the top of a hill or near the side of the stage and people are unfailingly smiley and kind as we push our way over the grass to a good spot. I remember something like this reaction when I used to push a pram in public places with a young baby, that sudden benign gaze from total strangers and a willingness to accommodate. 

It really wasn’t like that when Nick was still walking, because that was scary and unpredictable; I was always afraid that he would fall over, and of course with the classic HD lurch, most people assumed he was drunk and to be avoided.

Now somehow he is safe. If anyone assumes anything now, it’s usually that he has cerebral palsy; it looks pretty similar if you’re not in the know. There are a few stares, but mostly it’s a friendly nod and a smile as we pass by.

He even gets a few women talking to him, which always makes me grin when I think of the lady-killer reputation he used to have.

“You’ve still got it, bro!”

Actually, I’m quite disarmed by the kindness we see around us. It’s good to think that strangers might look at Nick and see a person enjoying a summer afternoon in the park watching a band like anyone else, not just an invalid being pushed about in a wheelchair.

But it can make me uneasy too. There’s nearly always a drunk bloke who wants to come over and shake his hand – why? Because they think they were at school together? Because he looks like a good egg? Or because he’s in a wheelchair and obviously impaired and has actually had the balls to come out and show himself in the outside world? Do they think it’s their good deed for the day or what? 
Or in their cups do they recognise another fragile soul who they can connect with? I wonder.

These encounters are pretty one-sided too, as Nick is so deaf that he can’t usually hear a word the other person is saying so he just tends to nod blankly, eyes not quite focussed, and that adds to the weirdness of them being so keen to talk to him.

I have had a few people asking me what’s wrong with him, and surprisingly many of them have heard of Huntington’s Disease, and that has to be a good thing.

But I don’t ever want him to feel like an exhibit or the cripple in the corner and I guess I am protective in these situations. Watchful.

Today I was approached by a woman who said she'd seen us before, and wasn't it a shame,

"Ahh - the poor thing." 

Nick was drinking a glass of wine in a plastic cup, in his best shirt, with the sun on his face. He looked happy. "He's so quiet," she continued, "isn't he good?"

What can you possibly say to that? Well, a lot, as you can imagine, but I was a bit gobsmacked. Again it reminded me of people from an older generation when my son was little who would ask if he was a good baby. I came to realise they meant did he sleep through the night. 

"No, he doesn't sleep a wink" I'd say, "but he's the best baby in the world!"

I don't think the woman is even listening as she clucks on, but I turn back to her and say, "He's gooder than you can possibly imagine. He's had an amazing life and it's not over yet. He's the best brother in the world."