Disability, Accessibility and Odd Attitudes.

 

Alan in his element

I don't often stray into such personal territory in my blog which tends to be about writing and publishing as well as the antique textiles and teddies that I 'rehome' and, of course, Alan's artworks. And gardening. That should be enough to be going on with, shouldn't it? But sometimes, you just have to make an exception.

Ever since I've known him - and that's a long, long time - Alan has been a seafarer. He was a trawler skipper for a while. I tapped into his knowledge when I wrote my play The Price of a Fish Supper which you can listen to in its best version with Ken O'Hara, directed by Isi Nimmo, here. Later, he became a charter yacht skipper, travelling to destinations such as the Canaries, the Azores, Norway and - on one memorable occasion - Russia. He's a well qualified and massively experienced ocean-going yacht skipper. He even taught sailing for the Scottish Watersports Centre in Largs

In the Canaries, we lived and worked aboard a big Catamaran called Simba. You can read about it on this blog, in several previous episodes, titled 'A Tale of Two Canary Island Winters.'

Unfortunately, a number of years ago, Alan's mobility gradually became worse, a condition which was eventually diagnosed as serious psoriatic arthritis coupled with osteo - i.e. wear and tear - arthritis. He has a good rheumatologist, and these days excellent treatments are available but some of them came too late to prevent damage. So, his upper body strength is fine, but his mobility is very challenged. And painful. He soldiers on. In fact last year, he managed a fundraiser for our local hospice, going round the village in his wheelchair and washing windscreens. 

There has been plenty written elsewhere about accessibility problems. The realisation of just how badly served people with disabilities are in this country only dawns on you when you're struggling with the shortcomings. 

For example, Booking.com seems disinclined to ask hotels and guest houses to clarify whether rooms have walk-in or over-bath showers. Many disabled people don't need a fully wheelchair accessible room, but they do need small adjustments. Disabled parking spaces are often (and inexplicably) situated a long way from entrances for people who struggle to walk. Hospitals are some of the worst culprits but hotels are bad too. Accessible rooms are sometimes lightless dug-outs situated down long corridors. Disability friendly rooms are usually dog friendly rooms as well, so we're faced with choosing between accessibility for my husband or asthma for me. Crossing places in the UK don't give you nearly enough time to cross.Anyone with a serious mobility problem could add to the list. People with disabilities don't expect the whole world to change to suit them, but a modicum of imagination and consideration might help.

However, that's not the point of this blog. Those were anticipated problems. What we didn't expect was a different kind of problem altogether - and that was wholly unanticipated.

Since my husband was diagnosed all those years ago, I've watched the changing attitudes of some  relatives and friends. 

Not everyone of course. Not by any means. We have some good friends and among them are a couple  who are happy to invite Alan onto their boat. With a little help, he can manage to get aboard. He sits at the helm and they let him get on with it. That's their beautiful yacht in the picture above. He hasn't lost any of those skills and he hasn't lost his mind. Just his agility. And he's instantly in his element, using all his considerable experience, because there is more to sailing than leaping about with ropes. Sadly, these willing friends live a long way away, so sailing with them is a rare treat. 

But gradually, there came the realisation that other invitations had dried up. There were friends with whom Alan had sailed for years. Friends who wanted crew. What they clearly didn't want was to accommodate somebody with a disability. Not even for a short trip now and then.

It took me quite a while to acknowledge this, and I expect it's the same for other partners of people with disabilities. You don't want to believe it. But it creeps up on you, until it becomes so obvious that you can't ignore it any longer. I'm pretty certain people will have similar stories from other areas of life and disability. People deciding for you what you can and can't do. Because they don't want the responsibility, not just of accommodating you, but of what they perceive to be the responsibility of you. Not even for a day or two, very occasionally. Just pause for a moment and think about that. Think about how infantilising and hurtful that is. Right up there with 'does he take sugar' isn't it?

Back on the water at last thanks to a local coastal rowing club!.