‘Guest House’ by Edward Gordon (1940 – )
Dear Readers, I spotted this rather wonderful painting on Facebook today, and when I shared it, my friend A said that it seemed to be very calm, but somewhat lacking in liveliness. Well, how a fortnight can change one’s perceptions, because I find myself looking at the rug and thinking ‘trip hazard’, while I doubt that the shiny floor would provide much purchase for my crutches. All in all, it’s a reminder that we see the world through our own eyes, and that that view can be skewed by our current situation.
This isn’t the first time this has happened, of course – as my mother and father became older and more infirm, their little bungalow seemed to become more and more like a house of horrors. Dad had a stroke, and so his spatial perception was not as good on his left hand side. He was able to walk around, but was forever bashing his left arm into door knobs and hinges and the corners of tables. As he was also on Warfarin, he regularly looked as if he’d been savaged by a werewolf, but usually didn’t notice. As I rushed over with the usual lint and bandage, he’d make little of the blood running down his fingers.
“Only a flesh wound!” he’d say. He remembered Monty Python and The Goon Show long after he’d forgotten who I and Mum were.
Mum became less and less able to walk, so even the tiny difference in height between the carpeted living room and the kitchen lino could prove to be a problem. I remember her making me a cup of tea whenever I arrived to stay with them, and then using her walker-with-a-tray to transport it over the little ‘bump’ and across the living room. It was the last little bit of hospitality that she was able to offer, before I took over all the cooking/cleaning/domestic duties for the rest of my visit. I can still see her brow furrowed with concentration as she manoeuvred her domestic chariot towards me, a small tsunami of tea heading in my direction with every step.
But the real challenges were when they came to visit us here in East Finchley, and I wanted to take them to the High Street in their wheelchairs. First there was the question of wriggling past the wheelie bins, over the tree roots and around the worst potholes in the pavement. Then there was the camber on the paths that seemed intent on dumping both of my parents into the kerb. Dropped pavements weren’t always dropped enough, cars didn’t always stop at the zebra crossing, shops and cafes aren’t always accessible. Why had I never realised this before? I felt like an idiot for not realising sooner how hard it was for people with any kind of mobility problem.
I went to see a talk by a remarkable woman called Sinéad Burke. She is a Little Person who also has a passion for fashion, and was the first Little Person to be on the cover of Vogue magazine. Many of the things that she said in her talk have remained with me, but one was that, although when we think of a ‘person with disabilities’ we usually think of a relatively young person in a wheelchair, there was a strong possibility that, if we live long enough, all of us will end up with a variety of disabilities. Then there are all the disabilities that are invisible to the observer, but very real to the people who have them. Plus, as I know, you can go from able-bodied to disabled (at least temporarily) in a matter of seconds.
I can’t help but wonder how much richer all our lives would be if everyone was able to play a full part in our communities, rather than being stuck in their homes because they can’t get outside. At East Finchley Station, no one in a wheelchair could possibly get a tube train because they’d have to go up two steep flights of stairs (and I know how steep they are because I fell down them only a fortnight ago 🙂 ). It’s even worse at Dorchester Station, where there’s a railway bridge from the westbound platform to get to Dorchester town centre. I have no idea what people are meant to do if they can’t get up all those iron stairs. And this is the tip of an iceberg of hazards and problems that face someone who simply wants to go out. As usual, if you have money for taxis or carers or other aids life is easier, so it’s the poorest who usually suffer the most.
I do think that some things have improved, but there’s still a long way to go. It’s so important to the health and vibrancy of a community that everyone who wants to be included is included, that everyone who wants to be heard is heard. Let’s hope that it will get easier and easier for people to play their part, regardless of their disabilities. We need everyone, after all.
When I was about 15, in the late 1970s, a teacher I had gave an optional assignment: Go out into public and pretend to have a disability. I realize this would be frowned upon now, and it is problematic in some ways.
But the idea was to put yourself in the shoes of someone who struggles to get around or communicate.
I opted to rent a wheel chair at the the mall, which was ostensibly a place that would be “easy” for a wheelchair user. Not so! While I could get into the shops, most of them had racks that were far too close together for me to navigate. Once I was in, I had difficulty turning around and so often had to awkwardly back out. I was rarely offered help. It was eye opening. Part of the time, I had a friend pushing me, and people would ignore me and ask her questions that should have been asked of me. That was my first experience that people see a disability and often assume other disabilities, like deafness or the inability to understand speech.
Another person when to several shops and asked for help in finding items, taking on a speech impediment (which I think was cleft palate, if I remember). He found that people got super frustrated with him when they couldn’t understand him and he had to repeat himself. Their embarrassment came out as snappishness or outright anger. We discussed how a person with a speech impediment might not want to risk asking for help.
As you say, if we live long enough, we will all experience physical and mental challenges. I dread finding out how lacking in compassion and patience people can be.
What an extraordinary assignment! I’m sure you’re right, it wouldn’t be allowed now. But what a way to actually understand, even briefly, what life is like if you can’t walk/have a speech impediment.
I do remember an experiment a while back where fourteen/fifteen year olds of both sexes(again voluntarily) wore a kind of ‘sack’ that mimicked being pregnant (though presumably without the morning sickness/swollen ankles/constant need to pee etc etc), and that really made the young people think about birth control.
Very true well said. I am sorry about your unfortunate injury, very hard for you not to be active but very good words. I do hope you recover well in the near future.
Having worked supporting people in wheelchairs and with disabilities it is quite true what you say. Even our local Post Office is not accessible! Once I took someone to what was said to be newly accessible beachside area and cafe, couldn’t get through the thick gravel from the car park! I was always told how to include and talk to/with a person, not about and over them, even if those who can’t communicate have feelings and may understand perfectly, you don’t know what is inside a persons mind. Best wishes to you regards Japh x
Thick gravel is my particular bugbear, not just for people in wheelchairs but also because it’s a very uneven surface for anyone with mobility problems – Mum had peripheral neuropathy in her feet, and was unable to visit one of her best friends after the friend had a gravel path laid down because Mum was too terrified of falling. And yes, talking to the person in the wheelchair, as opposed to their carer all the time, is something that really makes a difference.
A lovely post. But it’s not just people with disabilities who suffer… A mother (or grandad in my case) with a baby in a pushchair also have difficulties navigating their way along (sloping and blocked) pavements and into and out of shops and cafés etc. Bin men should be told!
You’re absolutely right, Mike, people with prams also have a terrible time, and it’s often complicated by having shopping/other children to ‘wrangle’ at the same time. I particularly dislike the way that disabled people and people with prams are often forced to contest the same space in buses – in theory people in wheelchairs have priority (which to my mind is fair), but for a mother who’s had to let several buses go by because there wasn’t room, and who now has to find a way to fold up her pram and manage a baby and a toddler on a moving, crowded bus. The whole thing needs to be rethought, surely it’s not rocket-science.
A very thoughtful post indeed. Take care!
25 years ago my wife and I visited an old friend of mine, G, who suffered from a terminal neuro-degenerative syndrome. G, in Brisbane, Australia, was by this time very frail and we took him out and about in his wheelchair which I had no previous experience of managing. My wife, meanwhile, was on crutches having almost lost a toe the previous day when a shower door collapsed in our Sydney hotel.
We visited a popular viewpoint opposite a busy cafe and there was a very steep slope to the main path from the car park. It was relatively easy to push G to the top and seat him on the bench (with a good view over some nesting ospreys) but my wife clearly wasn’t going to make it on crutches. She also took to the wheelchair but required a little more heft. I decided to take a run up and had built up quite a bit of speed by the time we reached the bottom of the slope, whereupon the two small front wheels stopped dead in the sandy deposits there and my wife was propelled straight out like a mis-fired rocket, face-planting in a dramatic sprawl in front of the cafe crowd.
The unintended audience fell about laughing and G clung to the bench in stitches, tears streaming down his face. For what remained of his life, G would always advise people never to get in a wheelchair when I was driving it, and to this day the incident still makes me laugh out loud – and brings a tear to my own eye when I remember my lovely friend.
Oh, what a lovely story – wheelchair ‘driving’ certainly requires a bit of training/experience. I was nearly propelled out of my wheelchair this morning, though in nothing like as dramatic circumstances as your poor wife. And so sorry about your friend, but what a great memory to have…
Going out and about with my Mum when she needed a wheelchair gave me an insight into the everyday hazards faced by people with mobility issues which I certainly didn’t have before. Like you, I remember the uneven pavements and the cafes with no wheelchair access. But I hadn’t really thought much about the challenges of train travel – I used to drive Mum to wherever she wanted to go – until I saw the new step-free footbridge under construction at our local station, St Erth. Just as you said about Dorchester Station, I’m now wondering how disabled people cope with the existing Victorian bridge. (This bridge is going to be moved to a heritage steam railway station in Somerset – it’s good to hear that it won’t be demolished, as I do like Victorian railway architecture.).
We’ve inherited so much Victorian architecture which is completely inaccessible – I wonder what used to happen to people who had mobility issues? I guess the richer people had servants and bathchairs and carriages, and the poorer people just didn’t get out and about much. I’m thinking of Tiny Tim and his crutches. But like you, I love the ambition and scale and sheer exuberance of a lot of Victorian architecture. It’s always a bit of a puzzle.