Thursday, July 30
The Fringe is full of the weird and wacky. A puppet show about Motor Neurone Disease, you say? Could the condition killing me be entertaining? Intrigued, I sign myself up.
An email arrives: the producer says the venue “can only be accessed up one flight of stairs”. But not to worry, front-of-house staff can provide “as much assistance as is necessary to help any wheelchair users climb the stairs”.
My legs don’t work. I weigh 13 stone and my power chair weighs the same again. Unless you’ve got Hulk Hogan front of house, I’m going nowhere.
Tuesday, August 11
Up early for my quarterly trip to the MND clinic. On the agenda: tracheostomy. Do I want a hole cut in my neck and a tube inserted to help me breathe? I’m not sure I do. It means round-the-clock care, an unwavering dependence on a machine, and makes eating, drinking and talking near impossible. It is hopefully a while off, but plenty to mull.
Each clinic visit is depressingly formulaic. The facility is beautifully modern. The staff are supportive but ultimately powerless. Each time, the same conversation: “So how have you been?” — code for: “How much worse have you got?” No cure, nothing the doctors can do beyond manage my decline. It is the young people in white coats in the research laboratory next door that offer hope for the future.
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Thursday, August 13
My sister pops in with my nephew Murray. His cheeky grin always brings a smile to my face. He was born a few months before I was diagnosed last year. So for all of his life he has known me to be disabled. No judgment. No awkward stares. Uncle Gordon comes on wheels.
In the evening I head out with some mates to, this time, an accessible Fringe show. After a cracking performance — and a few pints — I head to the loo. To my delight there is a disabled toilet. Alas it is occupied. Five minutes pass. Then out come three women. I glare up at them from my chair. “Sorry, there was a queue for the ladies,” they say.
My chair blocks the way. I have a captive audience. I politely enquire which of the three is disabled. None of them can look me in the eye. As they stand looking down at their feet, I get the sense they won’t be doing it again. They sheepishly shuffle past.
Friday, August 14
I have a friend visiting from London so I call the Fringe accessibility hotline to book some shows. The first two on my list are held in inaccessible venues. The third is “fully accessible once you’re in, but there are five steps at the door”. So that’s another no. We settle for our fourth and fifth choices — both varying shades of dire.
I head to the disabled loos at George Square. Again, the toilet is occupied. This time two men stumble out looking worse for wear. The residue of vomit rather suggests the pair “disabled” themselves on a few too many beers.
Tuesday, August 18
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Carers make my life liveable. My husband, friends and family all do their bit, but they have got their own lives. I need more help.
Talking to the council today was like getting blood out of a stone: “Things are really tough — our budgets are extremely tight.” I quite believe it, but surely it is a cut too far if folk are left sitting in puddles of pee?
Having to ask for help is bad enough, never mind having to beg. I fight my corner. It is those who can’t that the system lets down most. Call it what you like – budget realignment or efficiency savings – these cuts hurt.
Gordon Aikman is an MND patient and political campaigner. For more on the One in Five campaign, visit oneinfive.scot. To donate to Gordon’s Fightback text “MNDS85 £10” to 70070 or visit gordonsfightback.com