I sat down too long one day - and then something happened.

I sat down too long one day, and something happened.

Your eyes stopped connecting with mine, but I expected that. After all, I was no longer on your level. Instead of being an Amazonian five foot ten inches, I was shorter – barely half your height, on wheels and a titanium frame. I expected that.

What I did not expect was for everything else to change.

I was no longer on your physical level, but neither was I on your level as a person. Why else would you think it was okay to treat me so differently?

I finished my Christmas shopping, and my son watched me unpack my wheelchair into the car. You came up to me and wished me a Merry Christmas. I smiled and thanked you, and then you said, ‘I’m always nice to people in wheelchairs. It is because I feel sorry for you.’

Why do you feel sorry for me?

I was buying asparagus, and a delightful small child came and asked me what ‘fruit’ that was. I told him it was asparagus, and we had an endearing conversation about the origins of ‘sparrow-grass’. He was on my level, your son – and so I was confused when you came over and tried to pull him away. I tried to reassure you that he was just making conversation, but you weren’t worried that he was annoying ME. ‘No,’ you said fiercely, pulling his arm, ‘I do not let him talk to people in wheelchairs in case he catches a disease.’

Why do you think I’m contagious?

I was shopping, and you offered to unpack my scant ten items onto the conveyor belt. I refused, with a smile, but you insisted. ‘I always help people in wheelchairs,’ you said. Then, your unwanted help given, you asked why I used a wheelchair. And if I was paralysed. And a lot of other questions, sympathetically, not noticing that my monosyllabic answers were delivered between gritted teeth. My favourite question was in response to the news that I have six children. ‘Are they all yours?’ you asked, confusingly. And at the end of our conversation, you told me that you worked at the shop across the road and if I ever needed anything (a back rub? A personal loan?) I was welcome to come and see you.

Why must I be your good deed for the day?

I see it in your eyes every day, despite the fact that I know that most of you sit down, too. In office chairs with wheels, on sofas and in train carriages. Interestingly, if my leg was bandaged, you would not treat me as ‘other’. You would laugh and ask me ‘what I had done’ to myself. You’d never ask me about my sex life, or my life expectancy, or the intensely private parts of myself that you now feel entitled to ask about. My sitting-down-ness did not give you permission to answer your questions, nor to accept rudeness or charity or pity – my sitting-down-ness did not give you permission to treat me as though I am no longer on your level, as though I am lesser.

I sat down, and it was though I had sunk into a pit, or had been elevated to a pedestal. Neither true, neither real. I ceased to be a mother, a carer, an advocate who could advocate outside of my own lived experience - I ceased to be a shopper, or a driver, or an employee, or a member of the community. I became invisible - just because I sat down.

I sat down, and something changed forever.


  1. Ignorance is the Issue. People do not understand so they assume things. My daughter has 2 children with Nemaline Myopathy when the first was born and could not swallow the doctors put in a peg tub so that she could feed her. One day she went out with her daughter and fed her, someone who did not understand came up to her and called her lazy because her daughter had the tube, he thought it was easier to feed her this way. My daughter now finds a place out of view to feed them, that person made her feel angry and ashamed. IGNORANCE


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