Gordon Aikman is an MND patient and political campaigner.
“When your legs don’t work like they used to before. And I can’t sweep you off of your feet.” Ed Sheeran’s Thinking Out Loud must be a rare choice for the first dance at a wedding. Yet for my partner and I, it struck a chord. The lyrics are about two people growing old together, something we know sadly we will never do.
“Why bother with a first dance? Save yourself the indignity,” was the advice. But at the last minute, we did it. Crutch in one hand, I clung to my husband with the other. It was more of an awkward shuffle than dancing, but we did it. It was our first dance.
Disability now affects every aspect of my life. That is what motor neurone disease (MND) does. The progressive nature of the condition means challenges keep on coming, but I take comfort in knowing that today is my best day, my healthiest day. It is that mindset that gets me out of bed in the morning. As my body gets weaker, I have to develop workarounds. Instead of standing to recite our wedding vows, we sat on stools.
Hidden under my black woolly kilt socks were my Forrest Gump leg splints to keep me vertical. Disability inspires innovation. Life with a disability means I have to plan and think about the inane. Where is the nearest dropped kerb? Are there stairs? Will I be able to open the door? Is the toilet accessible? Life is harder, physically and psychologically, but it is rarely impossible. Faced with a choice between stares as I am wheeled into a pub with friends or not having a drink at all, make mine a double.
Until last year, disability was other people. Call me naive but I assumed it was something people were born with, or the result of a terrible accident. It was nothing I had ever properly considered. How times change.
I am living proof that disability can affect any one of us, in any number of ways, at any time. Last year I would run to the gym with ease. Last week I hobbled down the aisle with a walking stick. One in five working-age people in Scotland is disabled. My disability is now obvious, but many are invisible.
Yet disability doesn’t mean inability — quite the contrary. As someone with an ever-evolving physical disability, I have an insight into the challenges faced by disabled people. It is the barriers, attitudes and exclusion — whether deliberate or inadvertent — that disable people like me. It is the taxi ramp that fails to work; the stairs to the restaurant door; the glare of the pedestrian trying to get past; and the sigh of the shop worker.
As we look to the general election, I feel a healthy democracy means a parliament that reflects all those it seeks to serve. And yet there is evidence that disabled people face significant barriers to selection as parliamentary candidates and are generally less likely to say that they can influence local decisions.
I asked the Scottish and UK parliaments historically how many disabled elected members we have had. The answer: “Sorry, we don’t collect this information.” I don’t know about you, but as election candidates troop in front of the TV cameras, I see the same old male, stale and pale faces. It is time our parliament and politics truly reflected our people: one in five elected representatives should be disabled people.
How do we get there? A good first step would be for political parties to ensure meetings and materials are accessible. A beefed-up Democracy Diversity Fund to support disabled parliamentary candidates would also help. And I ask, is there even a case for all-disabled candidate shortlists?
More disabled people in politics means more who understand our challenges. That in turn means policies that work for everyone. Surely that is something all parties can agree on.
To donate to Gordon’s Fightback text “MNDS85 £10” to 70070 or visit GordonsFightback.com