Inspirational Euan showed courage to the end

One of the most remarkable men I’ve encountered lost his long and gruelling fight last week. Euan MacDonald (obituary, Aug 22) was diagnosed with motor neurone disease at 29 and given two years to live. Extraordinarily, he survived for 20.
How can you continue to be cheerful and charismatic with a neurological disease that progressively prevents you speaking, moving or breathing normally? With the kind of energy and drive, I think, and the same physical and mental courage as we saw in the former Scottish rugby star Doddie Weir. That indomitable, hard-yards optimism that says, “The beggar may beat us in the end, but we’re going to go down fighting”.
Euan had all of that. By the time he was in his early thirties he and his father, the businessman Donald MacDonald, had endowed a new MND research centre at Edinburgh University, now of global standing with 200 staff and pushing back the disease on many fronts.
Ten years ago he and his sister Kiki founded Euansguide, an accessibility rating service for venues, restaurants and hotels, to allow disabled people and their families to plan worry-free trips, experiences and events. Millions of people’s lives gained fun and freedom as a result. I frequently use it.
I met Euan several times. The first time he was still able to walk and speak, though his voice was going. Even after it went, when you met him his eyes twinkled with warmth — and then sympathy, because by then I was also in a wheelchair.
Earlier this year, to celebrate MND awareness and, I presume, his 20th milestone, his team invited me to meet him again. In advance I sent him a list of questions, because long before recent AI developments Euan launched SpeakUnique, a service that creates personalised synthetic voices for people facing the loss of their voice with illness, and I was looking forward to hearing his answers.
It was not to be. Twice the meeting had to be cancelled because of his health and other personal events. Behind the sturdiness of his legacies as a social entrepreneur and philanthropist lay the fragility and suffering of a disabled individual. The love of his devoted family, and his own sheer grit, I suspect, got him as far as 50. What a modest and admirable man.
Through a charity I am involved with, I recently underwent bias training. It was interesting but achingly right-on, as is everything about EDI — equality, diversity and inclusion — which basically means being fair. From which you can see I harbour a deeply troubling confirmation bias.
Who, I wonder, came up with the official name for the tourist tax soon to arrive in Edinburgh. Transient visitor levy, TVL, it’s called. Where do they find the civil servants whose professional life is dedicated to cultivating grandiosity, complexity and opaque acronyms?
What’s wrong with the common shorthand, tourist tax? Everyone understands that. Or visitor tax? Other options: bed tax, culture tax, city tax (but what about Skye), per diem tax (Bhutan, £78 a day, they’ve had it since 1974) , arrival tax, restaurant tax and climate crisis resilience fee (Greece).
But no, Scotland goes for legalese and self-importance. Transient, used as a noun, carries a whiff of homelessness and hopelessness. You could hear Donald Trump ranting about transients. And VL needed a defining third capital to raise it to the status of an acronym, which civil servants love most of all because acronyms are code that baffles those not in the know.
So please don’t get me started on BIDs (business improvement districts) which is tourist tax under even more convoluted cover. Oh dear, I’m displaying halo/horn bias. Shoot me now.
@Mel_ReidTimes