Lucy’s story – ‘it has created an anxious negative association with crowds and strangers’

I’m a powerchair user (electric wheelchair user) and used to use mobility scooters before that as I can’t walk far. I have fibromyalgia and chronic pain amongst other issues since 2008. One of my symptoms is allodynia – which means that my nervous system is faulty and will send a pain signal instead of a “touch” signal – so even the lightest touch can feel like I’ve been punched, hit with a sledgehammer, tazered or shot. The pain is like a lightning bolt and can make my muscles go into agonising spasms. If I’m standing it can drop me to the ground.

For some reason when you are in a mobility scooter or wheelchair, complete strangers feel compelled to touch you all the time – constantly patting me EVEN when I’ve told them not to, such as saying “please don’t touch, it HURTS”, they’ll then reach out to pat me AGAIN in response, either in apology or as if I’m being silly. I often wear a badge by stick man communications that says “don’t touch me without asking. Thanks”, but it doesn’t always work. When people get too close I try to back away if possible, and if I can’t move my powerchair away I will visibly flinch away from them if they look like they are about to try and touch me, but often they just reach further to pat me even when it’s plainly obvious that I’m cringing away from it and raising my hands in defence.

I’m fortunate that it’s not really possbile to push a powerchair as the engaged motors also act as brakes – unless I’m moving the joystick, the wheels won’t turn, but it could lead to someone tipping me out if they were to suddenly try with enough force. Up until now I’ve managed to verbally stop people before they have managed to grab my wheelchair and told them “DON’T PUSH!”, such as when getting on a bus, or through a doorway. I have also had a sticker made up for the back of my powerchair which reads “DO NOT PUSH” accompanied by a stickman drawing of a wheelchair user being pushed by another person, in a red circle with red diagonal slash across it in a universal “do not” sign, for people who may not read English, especially useful if I’m on holiday.

It is the touching issue that is the worst though, when I’m out in a busy place with my partner, such as at a concert or other busy area, I’ll get him to walk directly behind me to protect me from people bumping into me or touching me from the back. It makes me incredibly nervous about being out and about because physical contact in the wrong place (like my back or upper arms) is so painful, it has created an anxious negative association with crowds and strangers – if every time you were in that situation someone poked you with a cattle prod, you would no doubt develop the same anxiety over contact by repeated negative reinforcement.


Hannah Mason-Bish View All →

Criminologist and Co-Director of Centre for Gender Studies at University of Sussex

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