Tag Archives: wheelchair user

I was told “We don’t have any jobs for people like you”

Marie is a college tutor from Milton Keynes. Although her current job is ideal, she’s experienced barriers and negative attitudes in the past, including the time she was told ‘not to bother’ working. She passionately believes that everyone should be given a chance and is supporting our Work With Me campaign to make that a reality.

I’ve got osteogenesis imperfecta, also known as brittle bones. It means my bones can break easily so I use wheelchair, I can’t stand or walk. The condition can make me very tired and there are nights when I can’t sleep at all so it would be difficult to do a typical 9 to 5 job.

My current employer is understanding of my needs and the job I have is so flexible. I’m able to work from home which suits me perfectly. If I can’t pick up work on a certain day, they’ll email it across or agree a different time for me to collect it. But it hasn’t always been so easy.

“We don’t have anything for people like you”

When I finished my degree in Health and Social Care in 2011 I didn’t have a lot of luck finding a job. I went to the Job Centre for support and their attitude was pretty much “Why do you want to work? We don’t have anything for people like you.” There was no help or aspiration.

Being told not to bother working it made me feel angry and upset. I’d spent so many years studying, I’d put everything into my degree, I’d worked in the past and I wanted to progress. It made me feel worthless, like I couldn’t contribute towards society like anyone else. It was frustrating.

I decided not to put that I was disabled on my CV because I felt like I wouldn’t get an interview. I often managed to get interviews but when I turned up I could tell by people’s reactions that I wasn’t going to get that job. I think it was largely because they didn’t understand my impairment and didn’t want to take the chance.

If you’re disabled, it can be difficult to progress in your career too. I’ve had many different jobs and at times I felt like I was being treated like a child because employers didn’t allow me to use my skills and knowledge. I ended up leaving one job. If people aren’t going to accept me for who I am and what I can do, why stay?

The things that people say to you never go away. There have been times where bad attitudes have made me feel like “What’s the point in working?” I just wanted to find an employer who would give me a chance, like anyone else would be given a chance.

A disabled woman, Marie, holds up a placard which says #WorkWithMe
Marie supports Scope and Virgin Media’s new employment campaign, Work With Me

Work With Me

Knowing that there’s a million disabled people out there who want to work but are being denied the opportunity, it makes me angry because everybody should be given an opportunity. We all want to contribute to society.

I think a lot of employers don’t want to hire a disabled person because they don’t understand disability and they just want the ‘perfect’ person. So, the way to change negative attitudes is for those of us who are disabled to prove them wrong. To show that we can do it, and it doesn’t matter if we use a wheelchair or we’re visually impaired – with the right support, it doesn’t affect your ability to work.

My advice to employers is just give someone a chance and think about what they can do, not what they can’t do. When I got my current job, the feedback was really positive. The interviewers said that I was confident, I clearly knew the subject and I had all the skills. Why can’t all employers be like this?

People shouldn’t be put into a box. Some people can’t work, but that’s not the reality for many disabled people. That’s why I’m supporting Work With Me. I think this campaign is going to open people’s eyes. Unless you see stories out there, people won’t know what’s possible.

Please join me and help change the future of employment for disabled people.

Be part of making change happen. Find out more about Work With Me and share the campaign on your social media networks using #WorkWithMe.

We’ll be publishing a series of powerful stories, videos and photography over the coming weeks to highlight the issue so that we can secure everyday equality for disabled people.

People treated me differently when I became disabled

Hannah is a 26-year-old part time student and also enjoys fundraising when she is up to it. She became disabled at 14 and, in this blog, she talks about how her experiences changed when she started using a wheelchair.

I was healthy and fine until I was 14. Then I had an ankle injury and from that I developed complex regional pain syndrome. My mobility deteriorated. I went from walking with crutches to needing a wheelchair and about a year after my injury, I was totally bed-bound. I spent 4 years in hospital and 18 months in a neurological centre. I also have hyper-mobility syndrome, dystonia, arthritis in my hip, osteoporosis and a plated femur. I came home with a 24-hour nurse and carer. I still use a wheelchair and I have an accessible car which has been good. I have more independence again. I can get to specialists and do things in the community.

People’s attitudes changed when I became disabled

In June my old school was doing a TEDx conference and they asked me to tell my story. I spoke about raising money for Starlight Children’s Foundation because they granted my wish in 2013 to go on holiday – I wanted to help them to raise money to grant other children’s wishes. I also spoke about how people changed when I became disabled.

One of my closing comments was “Next time you speak to a disabled person, try to look beyond their disability, they are just like you”. I was basically talking about how people used to see me as ‘one of them’ but now, because I’m disabled, they see me differently. I’m still the same person. It’s just that my legs and a few other things don’t work.

Some people were unsure of how to act around me. I thought if I was walking in here you wouldn’t act differently, so why are you doing that now that I use a wheelchair? It’s strange to think that people treat me differently, just because I’ve gone from standing up to sitting in a wheelchair.

Hannah smiling in her wheelchair in front of her sofa at home
Hannah sitting in her living room

Some people speak to my mum instead of me

Often people do avoid talking to me. If I’m in a supermarket and ask someone “Can you tell me where this is?” they give the answer to my mum. I don’t understand that. If a non-wheelchair user asked a question, you wouldn’t give the answer to someone else.

Whilst I was with my mum at the checkout of the supermarket helping put the groceries into the bags, it came to paying. I retrieved my debit card out of my purse and put it in the machine. I requested cashback and then typed in my pin. I took my card out and awaited my cashback. Which the checkout assistant then gave to Mum with the receipt. I paid the bill and Mum got the cashback. I’m not sure how that works?

Once when I was out with my mum, someone asked her ‘Can she speak?’ – meaning me. My mum, a bit taken aback, quickly replied “Why don’t you ask her!” I think people are afraid of saying the wrong thing but saying something is better than saying nothing.

Hannah smiling in the garden holding her TED talks programme
Hannah in the garden

People treat me like I’m just a wheelchair

Once, at a craft exhibition, it was crowded so a lady just stepped across me and held on to my armrest just to support herself. She said “oh sorry” when she realised what she was doing and I thought “don’t say sorry – just don’t do it.” That happens quite a lot. At the same exhibition a lady put her shopping bags on my feet. Which was actually really painful. I’m not some sort of stand for you to put your bags on!

People often lean over you or stand in front of you, which they wouldn’t to anyone else. Some people even switch my wheelchair off and move my wheelchair too. That’s really annoying. I wouldn’t go and switch off your car.

I often get asked personal questions

We went to go see a house to see if it would be suitable for me and the Estate Agent said to me “So what do you think of the house?” then their next question was “So what’s wrong with you?” then “Will you ever walk again?” – I’d never met her before! That’s literally your first question to me?

It’s so damaging. It’s different if people volunteer the information or if you know someone really well. I get that they might be interested but it’s very personal information. Especially someone you’ve never met before. They can walk away and just carry on with their life with no extra thought about it and you are left feeling deflated, reminded of the reality you are living in.

You look well so you must be fine

There are times when people have said “Oh you look wonderful” and I’m like “Well we’ve been up since 7 am getting ready”. I like to look smart and presentable but sometimes it gives the wrong impression.

People say “You must be fine if you’ve managed to do all that.” It makes it harder for people to understand. But we shouldn’t have to change our lives to fit into someone’s idea of what a disabled person should look like.

Everyday equality

People should think of disabled people like any other human being. We’re the same, it’s just that we have extra difficulties to face in life. Talk to them like you would anyone else and don’t make assumptions about what they can and can’t do.

You can watch Hannah’s TED talk on YouTube.

If you have a story you’d like to share, get in touch with Scope’s stories team.

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

“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.