Living with an Invisible Disability 101: Effing Ableism!

(This was a personal social media post but the response from disabled friends has prompted me to share it more widely. Thanks to all who commented.)

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I had a really awful experience of Ableism recently.
I went to a new exercise class to try it out. Told the instructor I have Rheumatoid Arthritis (because that’s what you do in these circumstances, they need to know).
She immediately launched into a long rave about some other person who’d had RA since age 5, and who was ‘in a wheelchair!’ And ‘could hardly walk!’ and ‘went to doctor X and now is walking!, and how I ‘really should check Dr X out’.

This was without asking me a single damned thing about myself, what treatments I am on, what joint damage I’ve sustained, how I am actually doing right now – just a long boring tirade of unsolicited advice.

I said, ‘I don’t mean to be rude, but I’ve had this for 38 years, I think I know what I’m doing, thanks’.
Her: ‘Oh but YOUR hands aren’t like hers!’ (Implying I don’t have as serious a case of RA as her example)
Me: ‘That’s because I was a nurse when I was diagnosed and knew to strap my hands so they wouldn’t get deformed. And also, I exercise. Back in the day, doctors would tell you to go home and rest, now they tell you to keep moving. Which is why I’m here.’
Her: ‘Oh well, I really think you should check out Dr D, he’s a GP, you know! And has 2 and a half million clients!’
Me: ‘I already have a doctor I’m quite happy with. And a specialist.’
Her: ‘But THEY don’t have 2 and a half million clients!’
Me: ‘Look, I don’t mean to be rude, but when you have a disability, every time you meet someone new they start giving you advice you never asked for. It drives me batty.’
Her: ‘But this person is now out of the wheelchair, she’s amazing!’
Me: ‘If you knew what I’ve lived through, you’d probably call ME amazing too.’

During this conversation I could see her getting more and more agitated, and I felt as though I was somehow at fault, or perceived as being unfriendly or ‘difficult’ for not just accepting her advice.
TO be honest, I was very close to just walking out.
But I stayed, and did the class.

So, she introduced me to the class, then asked me in front of everyone ‘So you’re retired, right?’
Me: ‘No, I’ve had a disability for 38 years. But I do work a bit.’
Her: ‘Oh’.

Later in the class. Her: ‘This exercise is for the TA’s, the transverse abdominals. But you’d know that Liz because you were a nurse.’
Me: ‘Yes’
I didn’t tell her all the other things I’ve done in life (such as: tour Australia and the US as a poet, 6 books in print, two decades onstage as a muso/singer, 35 years experience as a writer and performer; a long history in community arts teaching writing and performance in schools, prisons, etc …)
Because (a) she didn’t ask and (b) it’s really none of her damn business!

I’ll say it again for those at the back.

As soon as people know you have something physically wrong with you they put THEMSELVES in a position superior to you, in which THEY know better than you what you should do. They have no problem speaking to you as though you’re a clueless idiot who would be well if you JUST DID WHAT THEY TOLD YOU TO DO.

I’m sure in her mind, she was just being ‘helpful’, ‘concerned’ or ‘nice’. But I went there to do a one hour exercise class, not to be harangued and belittled by a complete stranger.

It was stressful and upsetting, and I had to debrief and let off the steam with my partner when I got home.
So, although I liked the content of the class I don’t think I’ll feel comfortable about going back. I know her refusal to hear what I was telling her means there’ll just be more of the same in future. And I am OVER IT.

Here are some other examples of ABLEISM:
– ANY unsolicited health advice;
– pushing someone’s wheelchair without asking them first; – patting wheelchair users on the head;
– saying ‘Oh you poor thing, I’m so sorry’ as if your life is meaningless and essentially over and couldn’t possibly be happy and productive;
– talking about instead of TO the disabled person;
– talking AT the disabled person;
– Asking ‘what happened to YOU’ as an opener when meeting someone who uses a mobility aid (as if you have a right to demand to know their personal health informations despite not even knowing them);
– making assumptions about the disabled person’s diet, lifestyle, education, intelligence, and capabilities before you even know anything about them except their condition.

Honestly, would you walk up to a person of colour you’ve just met and say, ‘I knew a black person once and this is how THEY did life? So YOU should blah blah’,

Or approach a woman, and start telling them how you know what they should be doing/how they should act-speak-write-live because you’re a man with vast life experience and know better?
(Actually this last one happens to me all the time, especially online.)
And then get mean and nasty when she doesn’t smile and thank you for your unsolicited, unwanted advice?

Please … Just … Fuck Off!

This stuff is just horrible to be on the receiving end of. Especially over a lifetime. I’ve spent years and years sucking it up, and heard hundreds of random people’s opinions on my health issues, but since I’ve got into the disability activism space I’ve found from others the words to express the discomfort.

‘Ableism’ is a really good word for it. Please learn it, and stop doing it!

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