Friday, 13 June 2014

Visibly disabled- one year on

I haven't really spoken about the more 'visible' side of my disability since shortly after I got Poppy, my mobility scooter, and as that was now a year ago, I thought I'd share some thoughts and observations.

It has been strange to identify myself as disabled and no longer shy away from it. I've lost a lot of mobility and my condition has a huge effect on my life. It is hugely debilitating and walking is a challenge, so yes, I am disabled. It's just my reality. Hearing other people describe me as disabled took a bit of getting used to, but it's just a truth.

Going down the street people often walk in a huge arc around me as though I'm either contagious or have no control over where I'm going. I'm actually quite adept at driving my scooter, I don't regularly run people over, so there is no need to give me quite so much leeway. Give me personal space, yes, but I won't lash out at you, you won't catch my disability and I'm unlikely to run your toes over, so giving me quite such a wide berth is unnecessary.

People stare. A lot. You get used to it to the extent where most of the time you barely notice it, but it's strange for people who aren't used to being with me, or haven't been with me for a while. I'm afraid the stares now come as a compulsory additional extra. Maybe I should give a pre-trip reassurance to friends that they aren't wearing something hideous and they don't have anything smeared across their faces.

Children find me, well.. Poppy, fascinating. They stare and ask questions and it embarrasses their parents. It's quite amusing to watch the familiar scene unfold. The parent normally looks horrified, looks at me to judge my reaction and then hurries off out of my earshot before replying. My favourite of these encounters went like this: Child "Why's she on one of those?", Parent "because it's fun" *smiles and winks at me*- it's nice when people can still show a sense of humour rather than freaking out about it being a sensitive topic! I'd hope that parents sometimes take the opportunity to explain a bit about disability/differences (and that they're normal and nothing to be put off by) to their kids though. I really don't mind children staring, they don't know better. I admit it hurts slightly when they stare at you as though you're from another planet the whole way down the street, head turned in the exact opposite direction to the direction of travel, but I know I look different sat on my scooter, although I would argue they look pretty strange walking looking the opposite direction too, so y'know...

The people that totally avoid eye contact are quite common. They're so conscious of not wanting to stare that the normal level of natural eye contact is lost. I understand. I've probably purposely looked the other way to not seem to be staring, but it's a strange experience when people glance at you and then abnormally quickly look away and don't look back even vaguely in your direction. I definitely prefer the can't-bare-to-look-people to the hard-core-stare-people who literally don't even look away when you look them straight in the eye and raise your eyebrows though. I had one of these when waiting for a train once- she spent at least 15 minutes staring intently at my scooter- it was seriously awkward; I tried the staring back, raising eyebrows, the polite cough to draw attention to the fact I was alive and had a face, but all to no avail- her eyes did not raise from my body and the scooter on which I was sat.

It's frustrating when people stop dead in front of me with no recognition of the fact that I can't stop dead on wheels like people on legs can. Poppy's brakes aren't great and even if I put my feet down, I can't stop instantaneously. It's a nightmare. If people don't realise I'm there, or someone stops suddenly in front of them, it's just one of those things, that's fine, it's when they're well aware I'm there and then they stop dead without warning that it bothers me. Oh and then you get the people who are so stunned by your presence that they stand directly in front of you, staring at you, which means you have to manoeuvre round them, or smile and say 'sorry, can I just squeeze past?'- their response is normally to shake their own head back to life (you know- when people shake their head erratically with their eyes closed and then open them wide- I assume it's like jump starting your car, who knows..?!) and then apologise emphatically. It's often a panicked 'I don't know where to go to get out the way- so I'll just freeze' situation, in which case the intentions are good at least!

People who talk to you as though you're stupid are probably the most frustrating. My legs might be rubbish, and yes at times my speech isn't 100% perfect and I have abstract challenges with thinking, but I'm far from stupid. Speak to me the same as you would any other intelligent human being, I didn't use my brain in part exchange to get my scooter. I have a medical condition affecting my mobility, not a learning disability. I had an eye test at the same time as my mum one time, and a lady came across and asked mum whether she needed to be in with me. I hadn't been using my scooter long so her ignorance came as a bit of a shock!

One piece of advice: speak to me about my access requirements, not whoever is with me. They might not even know what I feel capable of that day and I'm more than capable of speaking for myself! I don't like being referred to in the third person when I'm there: hearing 'Can she..' or 'Does she..' is maddening and frustrating. Assume the disabled person is capable of understanding and answering until proven otherwise, not the other way round.

People rush to be over-helpful, are over-polite and leap out my way. Don't get me wrong- I appreciate it when people open doors for me because they are there at the same time as me. I just find it a little odd when someone runs across a room and leaps to my rescue by opening a door for me as though I would never have been able to get in otherwise. I can open (most) doors. Maybe not as slickly as people on legs, but when I was at Uni I regularly got through multiple doorways unaided every day. Gasp! Wow. Well done me! This group of people are by far the most innocuous and least annoying- it's just that being helped by random strangers feels a bit odd. The most peculiar random offer from a stranger was at the train station once- I was sat on my scooter and a (drunk) man asked whether I wanted a 'lift' onto the train- how he was planning on carrying me + scooter up the steps, I don't know (particularly given his inebriated state), and how he had missed the fact I had station staff with ramps stood with me, I really don't know.. It gave me (and his equally drunk friends) a laugh though!

I end up saying sorry a lot. I apologise every time I have to ask someone to move because I'm too wide to fit past them. I apologise every time I end up in someone's way because my scooter is blocking the aisle. I say sorry every time I need to do something differently. I apologise every time my disability inconveniences others. Yet it's not my fault that I'm disabled. It's not my fault that I need my scooter and the floorspace it requires is greater than the average human. If I just rode over people's feet when they're in the way it would save me a lot of time and 'sorry's, but I'm not sure people would like it...

You realise a lot of places are still very inaccessible when you're on wheels! Some places I can't get into. Other places I can only get into because I can still walk a little and my scooter can be lifted. You realise how inaccessible a lot of places must be to full-time wheelchair users; I'm lucky in that I can get up and walk a few steps, they'd have to be carried. Also, lifts break far more than I previously realised.

Cobblestones.. Nightmare. Enough said.

People give me sympathetic, pitying looks. They have no idea what my reality is. I know people mean well, but it's totally out of context- they don't know my name or my condition, they've never spoken to me. It's just a bit weird.

I spend a lot of time online and I find some of the disability-related things I see strange. There's an image that goes around that says 'the only disability in life is a bad attitude'.. Hmm, tell that to a full-time wheelchair user facing a flight of stairs- no amount of positive thinking will get them up them. Tell that to someone bed-bound due to a severe chronic illness in intractable pain- are all the same opportunities and experiences available to them. Some aspects of disabilities can be overcome, but disabilities are disabling- that's the whole point- a positive good attitude won't change that. A lady called Stella mentions this in this fantastic talk: http://on.ted.com/b0F6N.
Another is an image that says 'back in my day wheelchairs were for disabled people, not fat people'. Many disabled people are overweight due to medications or mobility impairment- how do you know that person isn't disabled? I feel fortunate that I'm underweight because I face far less judgement as a result, but that's wrong.
The last one I want to mention is an image of someone standing up from a wheelchair and it's branded a 'miracle', as though the wheelchair wasn't necessary. A lot of disabled people can stand and walk a little, myself included, if doesn't mean we're not severely disabled and in need of the mobility equipment!


The strangest thing is how much things changed with a small progression in my illness. When I was desperately struggling trying to get around on my failing legs, in agony and severely lacking in energy, nobody could see that I was ill.. Strangers wouldn't have dreamt of offering help, I would never be offered a seat on public transport (in fact I used to get 'the look' suggesting I should leap up to offer my seat to very able-looking people just because I was the youngest person around), people would sigh at me and push past me because I was walking slowly, people would bump into me oblivious of the fact it caused me pain- the world seemed like a harsh place. I could have done with some sympathetic smiles and a few offers of help back then, but my plight was invisible.

Before I was visibly ill, I was primarily seen as a young person. It seemed to be a label that turned people away. People don't talk to young people. Now that I'm primarily seen as a disabled person, people seem much more keen to chat to me in situations where I would have previously been ignored.

I like it when strangers get chatting to me and my disability isn't even mentioned. I like it when people compliment my scooter- I think she's pretty cool too. I love it when people offer to help, wait for a reply, and act on said reply. I like it when people talk to me and treat me like an ordinary human being. My mobility impairment is there for you to see, but just because you know my legs aren't 100% doesn't mean you know about me- talk to me, get to know me, don't judge me by my disability.


1 comment:

  1. Very good post from you Jess (as always!) when I go out in my chair people stare SO much, it confuses me but I guess I've gotten used to it now. People see disabled people all the time, it's not uncommom and it's not like I have two heads so I don't know why people stare so much. The patrionising way of talking is the most frustrating for me. I met an elderly man recently and I was with my cane, he took such an interest in my health and wasn't afraid to ask questions, it made a nice change to meet someone who wasn't afraid to ask or offend me.
    Have a great weekend lovely :) x Hayley-Eszti

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