Tag Archives: wheelchair user

“I hate it when people fake” – and other things you hear as a part time wheelchair user

Chloe is a student and blogger, creator of Life as a Cerebral Palsy student and an Ambassador for CP Teens. 

She has mild cerebral palsy, seizures and sometimes uses a wheelchair. For End the Awkward, she talks about some of the awkward moments this brings and how a balance of education and humour is the way to improve attitudes.

People often think I’m drunk

I’ve had various nights out where people thought I was completely wasted. I have cerebral palsy but I can walk unaided, with my stick. On a night out I don’t tend to wear my splints. I probably look ‘normal’ when I’m sat down and when I stand up people are shocked. People assume that, because I’m on a night out with friends, I’m drunk, when actually I can’t drink a lot with the medication I’m on anyway. At most, I might be a bit tipsy but bar staff will say “Oh you’ve had one too many”.

I tend to go one of two ways – I either make a joke, like “Oh yeah I guess I am… wonder why I’ve got this stick though” or I just say “Well actually I have cerebral palsy, I’m not drunk”. To which they’re usually like “oops”.

Misconceptions about wheelchair-users

Once, I was out clothes shopping with friends and I was in my wheelchair. My friends went one way to look at something and I was looking at a dress. It was on a higher hanger so I was leaning forward, not even standing up, just reaching and this woman looked at me and said “Ugh I hate it when people fake.” I was thinking “What?!” and obviously my friends weren’t there to back me up. I said “Excuse me?” and she said “Well you know, all these people pretending” and I said “Do you know what a part time wheelchair user is?” and she still didn’t believe me. I was just a bit speechless so I just went in the opposite direction.

Should we carry you down the stairs?

I’ve been at a restaurant where there were stairs to go down and the waiter came over like “We could carry you down the stairs?” so I said “I’ve got my stick, I can get down myself if that’s okay” and he just stared at me. I was like “I can walk. I may be exhausted by the time I get to the table but then I can sit down for the meal and I’ll be fine. And he was like “Oh… okay… so do you want me to carry your chair” and I said, “Well yes, that would be very helpful”. I’m amazed by how many people still think you either use a wheelchair all the time or you don’t, or you can either walk or you can’t.

Photo of Chloe in her wheelchair, wearing her leg splints

Fear of the unknown

Because I also have seizures I get avoided quite a bit – people don’t want you to go unconscious on them! It can happen anywhere, like in the middle of busy city centres! There can be warning signs but it varies. I have three different kinds of epilepsy. It can range from “Sit me down now, I’m about to pass out” to no warning whatsoever and I’ll just fall.

I definitely think it’s more a fear of the unknown that anything else. People aren’t sure what to do if it happens so they don’t want to be in that situation. There are so many different kinds of seizures. People think about the ‘typical seizure’ but a lot of mine aren’t like that. So they don’t really know what’s going on. Their instant reaction is to call an ambulance or stare at me, neither of which is helpful. I rarely need medical intervention.

There’s no need to avoid me though. Once I collapsed on one of my friends and she wasn’t sure what to do but I came round and it was fine. She knew that I had seizures but she’d never actually seen one until then. She just joked “A warning would have been nice!” and now she’s used to it.

Ending the Awkward

I think you have to use it as an opportunity to educate people but maybe with a slightly humorous twist. You don’t want to be too serious because I think they’ll just go “Right I’m avoiding doing that again ever in my life”  but if you laugh it off too much they might not realise that what they’ve done is bad. It’s about getting that balance right.

To hear more from Chloe, visit her blog. 

Read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story. 

20 poems for 20 years: my experience as a wheelchair user

When Stephen was 16, he had a sledging accident that left him paralysed from the waist down. That was 20 years ago, so to mark the anniversary, he’s written 20 poems telling his story. They reflect on his experience as a wheelchair user, and how he finds society’s attitudes towards disabled people. 

Having worked on this project for the past couple of years I hadn’t really appreciated how intensely personal the subject matter was. For some people, colleagues, friends and even family, this was the first time I had really outwardly articulated what was in my head.

Being viewed differently by society

The poems covered everything from my accident, to recovering in hospital, getting to know my wheelchair and how I now feel 20 years on. As I started to write and the poems began to come together, I realised I was also writing about how it feels to have a disability and how that changes the way you are viewed by society.Stephen smiling wearing sunglasses as the sun sets

So I was pretty nervous when I came to post my first poem via social media. I used Lego figures to visually represent what I penned in poem form, because let’s be honest you are never too old for Lego!

My reasons for doing this were not so much about the anniversary itself but more about my reflections on spending my adult life as a wheelchair user. Not for a moment do I regret my accident. Life is simply too short. I’m very proud of who I am and what I’ve achieved but life isn’t and hasn’t been without its challenges. Naturally some of these challenges have been down to adapting to a new life with a physical disability but some have also been about my frustrations at being given a label and having to deal with the way disability is viewed in today’s society.

An emotional journey

Whilst all of my poems provoked some sort of emotion internally when I wrote them, it was the ones about discrimination that caused the strongest reaction. One of my poems is called The Acceptable Discrimination, and this is about the fact that in many situations it seems okay that there are barriers that stop disabled people from just being able to lead a normal life.

I live in London and whilst it’s a wonderful, thriving and vibrant city, it can also be incredibly frustrating. Every day things are made difficult or impossible just because it’s not set up to cope with disabled people. The easiest example of this is the sheer number of public buildings, shops and amenities that are no go areas due to steps.

Public transport is also nothing short of a national disgrace. The fact that large parts of the London underground are without lifts and level Stephen, in his wheelchair at the top of a skateboard ramp, with graffiti in the backgroundaccess to the trains is staggering to me. It’s also virtually impossible to travel on any overground train without assistance. We’re told this is because some stations are old or that trains are too high, yet in Scandinavia I’ve travelled on trains independently where every fourth carriage is lowered to the level of the platform. It really isn’t that hard.

Attitudes towards disabled people

I honestly believe that most of this is down to attitudes. We still live in a society where many people don’t think twice about using a disabled toilet, parking in a disabled parking bay or in front of a drop-down curb. Nobody would entertain using a loo for a different gender so why should a disabled toilet be any different? Just as frustratingly there isn’t a day goes by where I’m not asked if I need help, or being randomly congratulated for doing simple things such as living on my own, having a job or going on holiday.

Changing the way people see disability

The reaction to the poems has been brilliant and I’ve been overwhelmed by the comments I’ve had. What has struck me the most has been that some people have said they have challenged the way they think about disability. For me this is the biggest compliment I could receive.

I’d love nothing more than if we just looked at the person rather than seeing their physical appearance, race, age and gender first. We’re all the same really and we all have the potential to be brilliant. 

Here are two of my poems that I hope you will enjoy:

The arranged marriage

The first time we met I didn’t want you.

A lego man lying in a bed, with a wheelchair and a set of drawers next to himI didn’t want to even acknowledge your existence.

I had no choice but to take you and I resented you for that.

You were confident, brash, everything I wasn’t.

But in your own way you needed me.

There were others waiting to take you.

But you and I were brought together.

We had to make it work.

The first time was awkward,

I didn’t know where to put my hands.

Fumbled across the room.

You were patient, you made me take it gently.

And the first time we went out,

It was awful.

I cried hot, childlike tears.

I felt everyone was staring, judging us.

But you didn’t care.

You waited, patiently till I was ready.

And we haven’t looked back.

20 years

Man and chair.

The acceptable discrimination

I am denied entry because of who I am.

Hairdressers, restaurants, theatres and gyms.

A lego figure in a wheelchair, at the bottom of some stairs. At the top of the stairs is a lego waiter offering a glass of wineMany seemingly a step too far.

Unable to travel where I want on public transport.

Those special parts of the city forever out of reach.

That is until someone decides to give me a lift.

Not able to live or work where I choose.

Having to ask for help when all I want is just to blend in.

Made to feel like a second class citizen in a first class world.

This is the discrimination I face every day,

for physically being different.

But I am the same.

I commute, I work, I pay my dues.

I’m tired from the effort, this city, of it just being ok.

Tired of the fact it happens and is somehow tolerated.

Tolerated and ignored by those with the power to make a difference.

But it’s actually their indifference,

that makes it acceptable to turn the other way.

Have you got a similar experience of becoming disabled later in life? Have you found that attitudes towards you have changed?

You can read the rest of Stephen’s poems on Storify or his website, and follow him on Instagram and Twitter.