Tag Archives: wheelchair user

I’ve been left on trains and called ‘a wheelchair’ – train companies need to improve their treatment of disabled customers

This week, BBC Rip Off Britain highlights the experience of disabled passengers on trains. Far too often, inaccessible transport stops disabled people from enjoying the same opportunities as everyone else. In some cases, people have been through stressful and upsetting incidents – from train staff forgetting them to being treated like an object. In this blog, Steph shares her experiences. 

Every day across the UK 100s of disabled people are left stranded on train platforms. As a wheelchair user, I use trains frequently to go to work and to socialise. But, of course, the one thing that I’m constantly aware of when travelling is accessibility.

When it comes to train travel, both locally and nationally, train companies have issues with the way that they deal with disabled people.

If you’re disabled, you always have to plan ahead

I have to plan my journey before I go anywhere in ways that non-disabled people don’t need to, and I rely on the services of train companies to get me to my destination without a hitch but this isn’t always the reality.

There have been instances when a member of staff at my local station has been unable to put me on or take me off the train due to medical reasons. They said “Our staff will always do their best to assist customers, but there may be occasions when they do not have the physical ability to place ramps. In such circumstances, alternative transport will be arranged.”

While they do offer a taxi to take me to the next accessible station, this can take over an hour to arrive, or they ask me to phone them in advance to book travel, which isn’t always possible.

I feel panicked when assistance doesn’t show up

Sometimes, when you can book assistance, nobody shows up. There have been several times when I have booked assistance with a train company and a member of staff has failed to meet me at the station, leaving me panicked because I don’t know whether they will come and take me off before the train departs.

And it’s not just me. Ceri Smith, Policy Manager for the disability charity Scope, spoke on BBC Wiltshire in April and said that ‘1 in 5 disabled people who have booked assistance on a train only to find that there isn’t assistance to get off the train at their arrival station’.

This is a very simple part of the service I expect as a disabled person. But when this occurs, I am left questioning why I should book assistance in the first place if this need can’t be met.

Steph a disabled woman smiling, sitting in her wheelchair in front of a radiator and white wall

I can’t use some train stations, so journeys take a lot longer

Not being able to go to a station due to lack of physical access is also an issue. My local train company, has a policy in place to order a taxi to take me to the next available station. This sounds like a good idea in practice, but the reality I’ve found to be completely different.

I went to Port Sunlight on a trip to the theatre and I found out at Central Station that it wasn’t accessible. It really baffled me that this is the case as Port Sunlight is a prominent tourist attraction.

I needed to travel to the nearest accessible station and get a taxi from there. There weren’t any accessible taxis available, and so the suggestion was to get one from Liverpool which would take over an hour at least.

Things like this are a real inconvenience to me.

Things are improving, but there’s more to be done

Of course, this is not to say that there aren’t staff who do their jobs well and provide great service for disabled people because there are and that certainly has been the case for me.

There has been improvement. Under the Access for All programme, introduced in 2006, The Guardian stated that ‘150 stations have been upgraded to remove barriers to independent travel, including by installing signs, ramps and lifts. A further 68 are under construction or in development.’ But, at the same time, I feel that disabled people are still not being taken seriously across the board when it comes to train travel.

It would be fantastic to see train companies work with disabled people directly to ensure that the policies they offer, when it comes to an element of the journey not being accessible, are realistic. And if they aren’t, they need to find an alternative that really works.

Also, the attitudes and terminology staff use towards disabled people who travel by train are important too. I’m not an object, so don’t call me a ‘wheelchair’. Instead, use the term ‘wheelchair user’, it’s far more appropriate.

We want to feel empowered, respected and valued just like non- disabled people. There’s progress that is being made, but there is so much more that needs to be done.

Keep the conversation going on Twitter by sharing your experiences, tagging @Scope and using the hashtag #RipOffBritain.

Or join the discussion on our online community.

Meet the campaigners and storytellers making equality for disabled people a reality

Today is the International Day of Persons with Disabilities (IDPD). The theme this year is “Transformation towards a sustainable and resilient society for all” and the UN agenda pledges to “leave no one behind”. But far too often, disabled people are left behind and it doesn’t feel like our society really is working for all.

Scope’s new strategy is focused on everyday equality but we can’t do it alone – it requires a collective effort of everyone working together. On IDPD, we’re highlighting some of the amazing campaigners and storytellers we’ve been working with this year.

Shani is tackling extra costs

From expensive equipment to higher energy bills, disabled people and their families pay more for everyday essentials. Support to meet these costs, such as Personal Independent Payments, often falls short. When you face so many extra costs, it can stop you from being able to go out and do things like everyone else.

Shani smiling, stood on a cobbled street

That’s why Shani launched the Diversability Card – a discount card for disabled people. As well as helping to alleviate some of the financial pressure, it also aims to be a catalyst for change by raising awareness of the value of disabled consumers. Find out more about extra costs and the Diversability Card on the website.

Will is campaigning to make public places accessible

Last year, Will made a short film to highlight the poor disabled access found up and down our high streets. As a wheelchair user,  he wanted to demonstrate how frustrating this is from his everyday perspective. He also wanted to draw attention to the fact that businesses are losing multiple paying customers.

The film went viral and thousands of people signed his petition. Alongside his job as a games developer, Will has continued campaign on accessibility – attending events in Parliament and speaking on TV. Read more about Will’s campaigning in this blog.

Christie is raising awareness to change negative attitudes

Christie’s daughter Elise is a happy, smiley two year old girl who has cerebral palsy. Elise has a bright future ahead of her because Christie is determined to overcome any barriers they face. Barriers like negative attitudes, expensive equipment and inaccessible playgrounds.

Christie is a Scope storyteller and local campaigner and she also shares their journey through her page ‘Elise Smashed It’. She hopes that by raising awareness she will educate people, create change and help other parents and children with cerebral palsy.  Find out more about Christie and Elise’s achievements on their Facebook page.

Dan and Emily are tackling the lack of disabled characters

When Dan’s daughter Emily asked why there weren’t any wheelchair users on TV, he knew that something had to change. A wheelchair user herself, Emily always wanted to find characters and people that she could relate to, but they were so hard to find.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair

Together, they created The Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower – and Emily has a staring role! Read more about Dan and Emily’s adventures in their blog.

Carly is making sure autistic women and girls are safe and supported

Carly is an Autism advocate and speaker. She wasn’t diagnosed with autism until she was 32, after years without support, feeling “like a second class normal person” and being told that “autism only happens to boys”. When two of her daughters were diagnosed, she noticed a huge lack of understanding when it came to autism and girls, and she’s been working to change that ever since.

Carly wearing sunglasses and a top that says autistic girl power

From her own experiences, Carly knows that there are serious consequences to not being diagnosed and she has dedicated her life to making sure women and girls are protected and supported.

As well as speaking and networking, Carly has been to the UN to ensure the rights of autistic women and girls are protected and she created a free online safeguarding course. She’s also passionate about changing attitudes towards autism and runs  events for autistic children, where they can invite anyone they like. Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you want to get involved in campaigns or storytelling, get in touch with the stories team. You can also find out more about our current campaigns on our website.

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.