There are plenty of despairing ‘Things not to say to a disabled person’ lists if you google them.
A couple of lead contenders appearing on the majority of these:
– ‘You look so well!’ Actually, we know we don’t by ‘normal’ standards, but I have some sympathy with this. It is meant in good faith, and to me at least as a Brit, not unlike talking about the weather. Might rain later.
– ‘Yeah, I know how you feel’. ‘Yeah, I get tired too’. These ones are tough to respond to. No, you don’t. You may, at times get the briefest of glimpses and insights into snippets of our life. But you are likely to see light at the end of the tunnel. With a chronic illness, you just don’t. It’s relentless. Even others with Multiple Sclerosis can’t fully understand: their MS experience is guaranteed to be different to mine, mine to theirs. But they get that we get it. Make sense? Probably not! Moving on.
– ‘My cousin’s friend’s brother has MS and swears by [standing on their head every Bank Holiday] [licking raw Brussel sprouts] [drinking the blood of young virgin ants]. Have you tried it?’ I don’t fight this one. I smile politely and change the subject. And get on with trying to live my life the best I can. Exercise, sleep, (mostly) healthy eating, medication for my symptoms. No eating of free-range squirrels for me thank-you, no smothering myself in ketchup.
And another classic, “You’re so inspiring”. The late Stella Young, ‘journalist, comedian, feminist and fierce disability activist’, delivered a fabulous Ted Talk on the subject: https://youtu.be/8K9Gg164Bsw
I’d love you to watch it. Laugh-out loud stuff on a serious topic. But a rough summary, also straight from Stella:“My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.”
I agree with what she says – and wish I could deliver a Ted Talk half as powerful. There’s a phrase that was coined somewhere: ‘inspiration porn’. Let’s roll out the disabled person in a nice pic to make us feel better about ourselves!
It is indeed strange being called ‘inspiring’ essentially because I still enjoy life. I love my family, I love my friends. I love the purpose that MS has given me. So I am genuinely bemused when I’m seen as an object of pity, and simultaneously ‘inspire’ people just because I still smile.
BUT BUT BUT, I do try so very hard to make others pause and think for a moment or three. And I realise that can take us smoothly into inspiration territory.
My biggest ‘target’, I think is other MSers, other disabled people. It is very easy to give in, to accept a welcoming bed. To have another nap. To retire. To hide. To accept our allotted role as second-class, weird citizens. A bit like Frodo, Bilbo and Gandalf heading into the West at the end of Lord of the Rings. I’m just not ready yet to fade away, thank-you. I accept certain limitations. I even begrudgingly realise I’ll never play rugby for England. But I’m going after my alternative reality big time!
Now not everyone has to do daft things all the time like me. They don’t *have* to do anything. But I would rather be stared at because of my funky wheelchair. Because I’m flopping out of a plane. Because I’m steering a Quadbike very very badly. Because of my embarrassing – and rather liberating – choice of clothes and hairstyles. And not because I’m a freak. Or a scrounger, as the lovely Daily Mail might have you believe.
So if I can persuade one disabled person to take up knitting, or writing, or healthier eating, or mindfulness, or Wheelchair Rugby, I’m happy. And as for you healthy people, I’m wanting to raise awareness of my own disability, Multiple Sclerosis. And of every other flavour of disability. And onwards to talking about all things diversity. There’s a lot to do and I have so much to say.
My other target is me. Being ‘out there‘ helps my brittle self-esteem too. I have just had a suprapubic catheter inserted so am feeling particularly sorry for myself this week. I’ll take all the ‘legendary’, ‘amazing’ and ‘magnificent‘ comments I can get! My CEO at Shift.ms even called me ‘cool’. Hmmm…
This final point isn’t gonna work, I know. It hardly rolls off the tongue or the keyboard. But it would be lovely to be told one day, ”You’re so thought-provoking”.