Dancing in the living room has its risks

Dancing in the living room has its risks

What I learned lately about… dancing

It was 1979 when the 2-Tone bands appeared on the UK music scene and reinvented skanking; a lost art of bouncing around to ska music looking like a complete dork.

I passed many a happy hour at Madness, The Specials, The Beat and The Selecter gigs catching the energy and sympathising with the anti-racism messages to Rudi.

So no surprise at joy remembered when ‘On my radio’ by the Selecter came up on iTunes radio after 30 odd years.

Blasting the sound in the living room and attempts at basic skanking dance moves ended in a busted Achilles tendon and six months of healing and rehab.

Funny enough it was almost worth it.

Joel

Joel

 

Joel has been in a wheelchair all his life. He is 32 years old and his parents have looked after him since he was born. They are worn out.

It is impossible to know how they feel about Joel.

He is their son who requires their attention for just about everything he does. They have been there for 11,680 days of dressing, showering and bowel movements. Between these days they didn’t sleep through on half the nights.

This is not a normal life.

Joel not only has physical disabilities he has mental issues too.

He couldn’t learn to speak and, according to numerous psych analyses, is not aware of where or who he is. Yet he seems to know what he likes and he gets scared and upset, even if very few people can tell the difference. The best care can see Joel comfortable and safe but no one knows if he is content.

Who speaks for Joel?

He is of legal age with an identity yet he cannot sign or speak his own name. He thinks for there are responses to likes and dislikes but no obvious capacity to discern. His smiles and cries and shouts are unfathomable to all but his parents and his sister. Often even they are not sure what he wants or what he means.

Those with a normal life cannot know how Joel feels or thinks.

His parents want to speak for Joel. They have provided his care, sacrificed much to be there for him and know him better than anyone, perhaps more than Joel knows himself. In the world of the rational they could, perhaps should, be his voice and decide what is best.

It just happens that Joel is aware of his sexuality. Whatever wiring his brain missed it developed the signals for procreation. He cannot speak his desires but   Joel obviously likes girls, especially the good-looking ones.

His parents see this. On occasion, it embarrasses them.

Only they believe sex is reserved for marriage and they cannot see Joel being married to anyone. It is silly to even think of it.

They do not even consider that Joel might want to have sex. Nor do they see that this fundamental human experience is what Joel the person might desire and even deserve.

However kind and dedicated they are, on the matter of sex Joel’s parents are clouded by their own preconceptions. They cannot truly speak for him.

It is likely that Joel will be denied any sexual encounters his whole life. His parents have a right to their worldview and are unlikely to change what they think about sex before marriage. They are also unlikely to change their devotion to Joel and his care.

There is an inevitable compromise in meeting Joel’s dependency. At some level, the caregiver decides and Joel must lose his voice.

It is a truly wicked conundrum.