I get treated differently just because I’m disabled, I’m determined to change that

Michelle was born with cerebral palsy and growing up she never saw herself as different. Then she went to a mainstream college and everything changed. People treated her differently and it really knocked her confidence. Rather than let it beat her, it motivated her to change things and she’s been raising awareness ever since. For cerebral palsy awareness month, she shares her ‘dos and don’ts of disability’.

I grew up going to a specialist school so everyone around me was disabled from nursery up until I was 18. Then I went to a mainstream college and that was a big culture shock. I’d never seen myself as ‘different’ – I was just me – but college completely changed my outlook on everything. People treated me differently and it really knocked my confidence.

Until then I hadn’t realised that being disabled can make you so segregated – you could tell that certain people just didn’t want to talk to you, they didn’t want to get to know you. People would either make mean comments or be overly nice because they felt sorry for me and I felt like I was fighting a battle every day. I just wanted to be treated like everyone else.

Woman in a car smiling

I’ve never disliked anything about myself but going to college made me realise that not everyone is going to be accepting and you do need to work harder just to prove that you’re a ‘normal’ person.

I think a lot of the time it’s because people just don’t understand. If they have grown up around disability or known someone who’s disabled, it’s not surprising. Up until recently, you’ve never really seen disabled people in the media so, when someone sees someone who’s a bit different from them, they’re not going to know how to act or what to say.

A lot of the girls I went to college with said they’d never known someone who’s disabled. All they had was this made up idea that disabled people are all the same. They’ve got these preconceived ideas and then they’ve never met anyone who’s disabled to prove that idea wrong.

My experiences at college completely changed my outlook and made me determined to change things. People need to be educated, people need to see disabled people in the media more. Then being around disabled people won’t be a big deal, because it will just be what they’re used to seeing every day. It becomes the norm. In the meantime, here are a few of my dos and don’ts.

Man pushing woman in a wheelchair. Text says 'the dos and don'ts of disability'

Do talk to me

I’m perfectly capable of speaking for myself but people speak to the person I’m with instead of me – even doctors. I’m sitting right here, you should have enough respect to talk to me instead of talking about me. Then, when I answer, they still don’t speak to me and it’s so frustrating because I’ve just answered you, you can see that I’m perfectly capable of talking to you but you carry on ignoring me anyway.

Don’t talk down to me

People talk down to you or act like you’re stupid. You’ll be out somewhere and people will go “Aw are you okay?” like I’m a child. No. I’m 28. I don’t need you to speak to me like I’m stupid. When people are patronising and treating you like you’re stupid, that can be just as damaging on your self-esteem.

Do take my word for it if I say I don’t need help

People often go “Do you want help?” and I say, “No I’m alright thanks” and then they just take over and do it anyway, not listening to what I’ve said. Sometimes, they don’t even ask, they just do it.

And definitely don’t push my wheelchair without asking

Some people will just push my wheelchair. I’ll be out somewhere and someone will go “Oh I’ll push you” and I’m like “No I don’t need you to do that”. You’d never pick someone up and move them around.

Don’t assume we’re all the same

A lot of people think if they know someone with cerebral palsy, I’m going to be exactly the same. And some people are like “Well you can’t have cerebral palsy because you can do this or you don’t do that.” I know best. Not every form of cerebral palsy is the same.

Do see beyond disability

In the media, people either don’t show disabled people at all or when they do, it’s solely focused on that. Yes, I’m disabled, but I am more than that. I’m a person first. Cerebral palsy doesn’t come before me as a person.

We’re just ordinary people, we don’t want to be treated any differently.  We might do things differently or have to adapt, but we’re just human.

For more dos and don’ts, watch Michelle’s film.

Virgin Media helps ParalympicsGB go for gold

In this guest post, our partner Virgin Media, is excited to announce their partnership with the British Paralympic Association (BPA). 

Virgin Media in partnership with us and the BPA have the ambition to positively change attitudes towards disability to drive participation of disabled people in work and everyday life.

At Virgin Media, we celebrate and value differences. This includes working to change attitudes towards disability – supporting disabled people in work and everyday life. That’s why we have partnered with Scope until 2020 to support more disabled people to get into and stay in work.

But our ambitions don’t end there. We also want to change attitudes towards disability to help drive participation of disabled people in the UK.

That’s why we’re so delighted to announce our new partnership with the BPA. This means that Virgin Media is supporting ParalympicsGB in their fearless quest, both in PyeongChang and in Tokyo in 2020. We’ve watched ParalympicsGB go from strength to strength over the years and I am thrilled we have the opportunity to support these athletes so they can reach even greater heights.

Not only does this partnership sit perfectly alongside our existing work with Scope, we know that sport has the power to inspire the country.

The 2012 and 2016 Paralympics were landmark moments that saw the country rally behind our Paralympic stars. And it did more than just spur us to unprecedented successes at the games.

Research from Scope shows that these sporting successes can change attitudes right across society:

  • Three quarters (78%) of disabled people say the Paralympics improve attitudes and four in five (82%) say the Games change negative assumptions to disability.
  • The poll of 1,000 disabled adults reveals that four in five (82%) believe the Games make disabled people more visible in wider society and challenge negative assumptions about what disabled people can achieve.
  • And more than three quarters (78%) of disabled people say the Paralympics have a positive impact on attitudes to disability.

In addition, recent research we commissioned to mark the start of our partnership with the BPA showed that Paralympians are the most inspirational athletes for young children.

Of course sport can’t change everything. That is why Virgin Media, Scope and BPA will be campaigning all year round, long after ParalympicsGB leave PyeongChang.

We are partnering with incredible organisations like Scope and the BPA to transform lives of disabled people, whether it’s on the snow or ice, in the workplace, or by shifting attitudes towards disability.

Our amazing Paralympians are already achieving great things in PyeongChang everyone at Virgin Media is cheering the team on.

To keep up to date on how ParalympicsGB is performing at PyeongChang, visit the BPA’s website or follow them on Twitter @ParalympicsGB

Thanks to these mums, we’re getting closer to equality

This year for Mother’s Day we wanted to take a moment to say thank you to the mums who are campaigning and raising awareness to make everyday equality for disabled people a reality. ‘Not all heroes wear capes’ and thanks to their work, the world will be a better place, not just for their children but for your children too.

We wish we could thank you them all individually but, for now, here are the stories of just a few of the incredible mums we’ve been working with.

Christie

12340-Xmas-digital-blog_header-672x372-v1-happy
Christie and her daughter Elise

Last year, among many other things, Christie starred in a Scope video talking about inaccessible play areas. The video was picked up by someone at the local park committee and a fundraiser was started. As a result, enough money was raised to make Christie’s local park accessible not just for her daughter Elise but all disabled children in the area. Christie also does a lot of awareness raising in the media and started her own Facebook page.

“As a family, you want to be out doing things but nobody ever seems to think about disabled children. I feel like Elise misses out because the world is still not accessible. Sometimes I don’t want to go to places, which means I’ll sit in the house and get angry at the world, then get sad for Elise, and sad for my older daughter Lucy.  But instead of letting it get to me, I’ve decided to change the world instead.

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.”

Marie

Marie w flowers
Marie at the park with her son Mark

Marie has worked with us on some of our biggest campaigns including The Disability Price Tag and Work With Me. Marie’s motivation to fight for everyday equality is her son Mark. Her impairment doesn’t affect her ability to be a great mum, but she’s told us about unfair barriers that have an impact on family life.

“As a mum, I’m just like any other parent – disability doesn’t change anything – but I do face unfair barriers that have an impact on family life. I need a new wheelchair but it will cost £9,000 and we’ve been told we have to pay for that ourselves – which we can’t afford. I feel guilty as a parent because when my wheelchair breaks I haven’t been able to do things with my son Mark, like take him to the park.

Mark is always doing things and he most definitely doesn’t see me as anything other than ‘mum’, but he shouldn’t have to miss out. Something needs to change because it’s not fair. We should be able to do things like any other family.

My husband Dan and I have started making an album for Mark, for when he is much older, to show him all the times I have done things for magazines and TV, to raise awareness and create change.”

Sarah

SarahB
One of Sarah’s many ‘toilet selfies’ – to raise awareness of inaccessible toilets

Sarah is a campaigning to improve the accessibility of toilets and bathrooms in the UK. Her blog about her son Hadley has significantly raised awareness of the issue, including her toilet selfie advent calendar that went viral in December.

“Hadley was about three years old when he got too big for baby changing units. I realised my only other option was lying him on the floor, which was a bit of a shocker.

Until then I believed accessible toilets contained everything a disabled person needs. It was a huge eye opener for me. I decided there and then that I needed to get involved in campaigning.

In the long term I don’t want Hadley being an adult and having to fight his fight. If we don’t stand up for our kids who else will?”

Carly

Carly UN
Carly and her daughter ‘following in her footprints’ at the United Nations

It took 32 years for Carly to get her autism diagnosis, after years of being misunderstood and brushed off by professionals. Now Carly works tirelessly to raise awareness of autism and girls and create equality for people with autism . As a single mum to three daughters, two of whom are also autistic, she’s creating a better future for them and setting a wonderful example as a role model. This year Carly was awarded an MBE for her work, which notably includes a speech at the United Nations.

“In 2008, I was told by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to ‘he’ or ‘my son’. There was nothing for girls. I just thought why? I’ve been working to change that ever since.

It’s a really exciting time because I’m looking around and seeing so much more awareness of autism and girls. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Navigating an untrodden path is scary but it leaves established footprints for our daughters to one day follow.”

Join the conversation on Twitter and tell us about some of the amazing mothers we haven’t mentioned.

International Women’s Day – “We need to be the role models we want to see”

This International Women’s Day we’re celebrating some of the amazing women we’ve worked with already in 2018. They’re bold, uncompromising and helping to make everyday equality a reality. 

Sam Renke

Profile picture of End the Awkward star Sam Renke

Actor Sam Renke, has supported our End the Awkward campaign as well as starring in Maltesers’ hugely successful disability focused adverts. Sam constantly challenges assumptions and negative attitudes towards disability through her own work and as a Scope Role Model.

“Curiosity is a good thing, and disabled people will always come across it. I want to deal with it in a positive way. Ignorance breeds ignorance – how are people going to learn if they don’t ask questions?

It’s all about bringing the barriers down. I try and encourage people to be more open-minded.”

Carly Jones

Carly Jones has worked with us this year talking Carly Jones - woman wearing t-shirt saying "autistic girl power"about autism and challenging perceptions about what she can and can’t do.  In January Carly was awarded an MBE for her work raising awareness about autism and girls. 

“Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness.

People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.”

Rosie Jones

Rosie Jones - Woman standing again blue background in a pick top

Rosie Jones is an actor and comedian. This year she spoke to us about the need to give more opportunities to disabled actors. Rosie also starred in a groundbreaking episode of the BBC One hit series, Silent Witness that focused on attitudes towards disability.

“Media has a pivotal role to play in changing attitudes towards disability. I want to turn on my TV and see a disabled person reading the news. Although, perhaps not me…that would take far too long!”

Hannah Barham-Brown

As Woman in a wheelchair, smilinga Junior Doctor, Hannah Barham-Brown constantly challenges pre-conceptions about disability in the work place. She’s currently working with us on our Work With Me campaign to help get more disabled people into employment.

“I think, to an extent, we need to be the role models we want to see” 

You can read more from Hannah on her blog.

Pippa Stacey

Woman holding a "spoonie survival kit" smiling

Pippa Stacey is a writer and social entrepreneur. This year she became an Olivier Awards Be Inspired Champion, for her campaigning on accessible theatre. She also founded the successful Spoonie Survival Kits, to support people with chronic illness.

“The most rewarding aspect of the project in my eyes, has been developing accessible and remote volunteering opportunities, inclusive of chronically ill people. Many of the items within our kits are handmade by talented crafters living with chronic illnesses.

My new year’s resolution was to continue ‘paying it forward’, and I wholeheartedly encourage you to do the same!”

Shani Dhanda

Asian woman standing outside.Shani Dhanda is a disability rights advocate and social entrepeneur. This year Shani shared her experiences with us to highlight the Extra Costs that disabled people in England and Wales face.  Shani campaigns tirelessly for disability equality and is passionate about making sure BAME (Black, Asian and Minority Ethnic) are represented in these conversations.

“Social attitudes are a significant barrier. Many struggle to see the person beyond the impairment or condition and act awkwardly. One in four people have admitted to avoiding conversations with disabled people because they worry about causing offence or don’t know what to say. This really astonished me.

I’ve also experienced loneliness as an adult, being excluded from social situations or activities due to my condition or people making assumptions about what I am able to do, or not. It’s really frustrating, especially as I’m a very independent person who will always find an alternative way of doing things.”

Which women do you think are doing amazing things this year? Let us know on Twitter with the hashtag #InternationalWomensDay.

Great to see disability represented at the Oscars, but how far do we still have to go?

Last night, the Oscars results showed that we are moving forward when it comes to representation of disability in film. The Shape of Water – a film featuring a disabled character and uses sign language – won best film (although a disabled actor playing her would have been even better). The Silent Child – which stars a six-year-old deaf British actress and tells the story of her struggle to communicate in a hearing world, won best live action short film.

In this blog, Max Dean, a film lover and writer, reflects on the history of disability in film.

As a fan of horror films, I realise that the representation of disability in this particular genre are, largely quite negative; the most recent and controversial case being M Night Shyamalan’s Split from last year starring James McAvoy.

Before and after the release professionals with patients of dissociative identity disorder (DID) expressed understandable concern over the stigma that the film could place with those living with the condition. Yet, just like Psycho’s portrayal of a real-life mental-health condition, the portrayal of DID in Split is nonsense. People with DID are no more prone to violence than any non-DID person.

Disability in historical cinema

In contrast, one of my favourite films of all time; James Whales’s Bride of Frankenstein (1935), has arguably, perhaps one of the most touching scenes with a disabled character in the history of cinema. To me, it perfectly captures the loneliness that those in the disabled community can face due to misunderstanding across our society and its preconceived perceptions.

In this sequence our main character, Frankenstein’s ‘monster’ comes across an older man with blindness who is living on his own in the woods, shunned by the villagers we see in other scenes who chase the ‘monster’ across the countryside. He befriends our main character. They provide each other with the one thing each has wished for; a friend and companion. The ‘monster’ himself is similarly treated as a monster due to his appearance and supposedly limited and baby like intellect. It is only when villagers come into his home and confront them both that he loses his friend.

In this context, disability is rather refreshingly, seen as a virtue and played in a positive and indeed, very humane light.

Disabled people must be given a genuine voice

A more recent film which has comparable character arcs in its story to the Bride of Frankenstein is The Shape of Water. Due to Sally Hawkins’ excellent performance this has won plaudits as a breakthrough in the cinematic presentation of disabled characters. With this however, it also raises the question of non-disabled actors playing disabled characters.

To show that cinema really embraces disabled people as equals, the film industry must therefore give disabled people a genuine voice. This can be achieved by not only giving more roles to disabled actors but the directors chair itself. Yes, these roles can be sympathetic, but they also must be truly empowered characters.

That would be a truer sign than any, that, we as a society have truly changed to embrace disability and recognised the worth of everyone in it.

What are your thoughts on this year’s Oscar winners? Start a discussion on our online community.

World Book Day – “How many characters can you think of that have a disability?”

To celebrate World Book Day yesterday (1 March) , we got in touch with writer and blogger, Emily Davison to talk books. Emily recently graduated with an Masters in Children’s Literature and was keen to tell us about some of her favourite disabled characters in Children’s and Young Adult Literature. 

World Book Day one of my favourite days of the year. Many of you might be dressing up as your favourite storybook character today, but ask yourself this question; how many characters can you think of that have a disability?

Admittedly there is not a huge deal of authentic disabled characters represented in children’s literature, however that certainly doesn’t mean to say that there isn’t any at all. There are a number of authors who have created authentic, relatable and positive disabled characters in their books and today I wanted to acknowledge their efforts.

So, without further ado, let’s begin!

Charlie Ashanti from Lionboy by Zizou Corder

Book cover of LionBoy

The Lionboy trilogy is a series about a young cat-speaking boy Charlie Ashanti who embarks on a journey across the world to rescue his kidnapped scientist parents.  Charlie is an incredibly interesting character alongside being mixed raced and growing up in a bi-cultural background, he also lives with an invisible disability. Charlie has asthma and throughout the series has to deal with the task of managing his health condition, alongside being the hero of story.

The series is an example of a book that features a disabled character without pigeonholing it as the main aspect of the book. Charlie is an empathetic, clever, competent and incredibly brave character and one that no one could help but admire.  This book remains one of my absolute favourite stories.

William Trundle from The Christmasaurus by Tom Fletcher

Christmasaurus

 The Christmasaurus tells the magical story of William Trundle who forges a very special friendship with a dinosaur. As a wheelchair user, William knows what it feels like to be different but that doesn’t stop him from having the journey of a lifetime when he and the Christmasaurus embark on a journey to return to the North Pole.

Tom Fletcher doesn’t scrimp on the important details that come along with being a disabled child, like when William gets bullied for his disability and experiences feelings of isolation or when William can’t use stairs due to his wheelchair. Past all the twinkling lights, singing elves and the magical dinosaur the story tackles serious issues of bullying, loss and overcoming internal ableism.

Linh Cinder from The Lunar Chronicles by Marissa Meyer

lunar_chronicles

The Lunar Chronicles is a dystopian fairy-tale centered around the young cyborg mechanic Linh Cinder. Cinder is an amputee, having lost a hand and foot as a result of being caught in a fire accident as a child. However thanks to the advances of future technology, she becomes a cyborg fitted with computerised prosthetic limbs which enable her to regain her mobility.

Alongside her battles against the evil Lunar, Queen Cinder also battles prejudice and discrimination as a Cyborg, something that I as a disabled woman could relate to. Sometimes where disability is concerned especially in the fantasy or sci-fi genre there are more disabled characters than you might imagine, you just need to try looking at it another way.

Vanez Blane from The Saga of Darren Shan by Darren Shan

DarrenShan Saga

Now although Vanez Blane is a minor supporting character in the series, his story is certainly one worth mentioning. Vanez is the robust Games Master of Vampire Mountain, responsible for training the Vampire Generals.

He’s strong, skilled and and a highly respected Vampire in the community. Vanez is also partially sighted, having lost an eye in a fight with a mountain lion .Despite losing his sight, he continues to train the would-be Vampire Generals and can still put up a good fight in any duel!

Ms. Elwyn from Moses Goes to a Concert by Isaac Millman

Moses goes to concert

Moses Goes to a Concert is a fascinating depiction of deafness with its illustrations of sign language and its inclusion of a large cast of deaf characters, including Moses the protagonist. However, the character I want to draw your attention to the Ms. Elywn, a Percussionist who also happens to be deaf. On a visit to a concert she inspires Moses to one day become a percussionist like herself.

Her presence in the book is incredibly empowering to readers and reminds us all not to presume a disabled persons capability.

So those are a few of my favourite disabled characters that I have come across in Children’s Literature. Do you have any to add to my list? Comment below with your favourite disabled characters from literature.

You can see more of Emily’s work on her blog

“A wheelchair is just a seat you’re sitting in.” – International Wheelchair Day

Today (1 March) is the ten year anniversary of the first International Wheelchair Day (IWD). To celebrate, we spoke to the event’s founder, Steve Wilkinson, who told us how he turned it into a global event and why it’s such an important date in the calendar.

I was born with Spina Bifida back in 1953. I had a wheelchair when I was a kid, but preferred to walk, which I could do thanks to the calliper I wore and the walking sticks I used right through until about six years ago.

In 1987 I was on holiday in Florida and went to the Disney theme parks and hired one of their chairs. The freedom it instantly gave me was huge. When I got home, I got my own wheelchair and it allowed me to go much further distances and more comfortably. I couldn’t get anywhere without it now, it’s my life.

I started to campaign about wheelchairs and disability in the 90s when I saw how difficult it was to get into places and the access issues wheelchair users faced.

I worked with a lot of organisations on accessibility issues and campaigns. It made me realise that I wanted to start my own business. I’ve learnt over the years that a lot of good ideas fail because they don’t get enough mass engagement. That’s the biggest thing you need to give an idea momentum.

International Wheelchair Day was born

In February 2008, I started researching International Wheelchair Day and was surprised to find that there wasn’t one. I’m quite an adventurous person so I thought let’s just do something and see what happens.

I chose 1 March in memory of my mother because when I was a child, she was everything to me. She pushed me, both physically in my wheelchair and also as a person to take on challenges and be a positive person. She was my inspiration.

So on 1 March 2008, I put a post out on the internet about it announcing ‘Today is International Wheelchair Day, I know this because I just invented it’. However, these were the days before Facebook and Twitter were big things and nothing happened.

A year later I put another post up and again nothing happened. The third year, I discovered that a disability group in Salisbury had recognised IWD and were having a meeting about wheelchair access. I thought, ‘get in, somebody’s found it!’

It was 2011 when things actually took off. Hannah Ensor, a wheelchair user and a talented cartoonist, got in touch to say she’d heard about IWD and that she’d designed a logo for it. So that was it, out of the blue we had a logo. For every year since, Hannah has designed the official logo and every year it’s slightly different.

That was important because someone else had recognised the day and made it feel official. From there it’s just grown year on year.

Going global

In 2012 I went to Australia and met with a disability group in Adelaide and Gail Miller, the author of a book about life in a wheelchair. They were keen to recognise IWD and we held an event attended by the South Australia Disability Minister and Kelly Vincent, a member of the South Australia parliament (who was also a wheelchair user). They also helped me get some interviews on the radio in Australia and it just really took off there.

That year I also got an email from a woman in Nepal. They were having a parade of 80 wheelchair users in Kathmandu to celebrate International Wheelchair Day. For me, that’s become symbolic of what this day is. It’s all about engagement of people in a collective event. Last year they had 239 wheelchair users in their parade. They’re doing it again this year.

IWD2016 Nepal 5(Parade with close up banner)
International Wheelchair Day parade in Nepal 2016

What’s next?

Every year I wake up the day after IWD, go online and discover all these different events around the world where people are celebrating it. It’s really gone viral. If you google it now, there are thousands of mentions of it. It’s got a life of its own!

A girl got in touch with me recently and told me that she wasn’t able to get out of bed most of the time. However, the five minutes that she spent outside in her wheelchair on IWD was her celebration. I just think that’s a fantastic story.

The wonderful thing about IWD is that there’s no one way to recognise it. People celebrate it in very different ways.

There are big events happening across the world. People mark IWD here in the UK and in Australia, Nepal, Senegal, South Africa, Bangladesh, Pakistan and the United States of America. There are probably events elsewhere that I’m unaware of. It’s fantastic!

This year is the 10th anniversary of the first International Wheelchair Day, I hope it continues to grow and more people can engage with it and feel a part of something.

 Find out more about International Wheelchair Day.

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

Help us to get people talking about the extra costs. Share our report on Facebook  or Twitter using the #ExtraCosts

We also have information about support with your fuel bills

“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.

Tackling the price tag of disability

Life costs more if you’re disabled.

Our new report, The disability price tag, reveals that disabled people are forced to pay more for everyday essentials.   

From expensive items of equipment or adapted cutlery, to higher energy bills and costly insurance premiums, disabled people face extra costs across all areas of life.

Read more about our research and how we can tackle the price tag of disability. 

The financial penalty of disability

Four years ago we published research into disabled people’s extra costs and began campaigning for change.

Four years on, disabled people still face a substantial financial penalty.

Our latest research finds that disabled people face extra costs of £570 a month related to their impairment or condition. For one in five disabled people, these costs amount to over £1,000 a month.

This is on top of welfare payments such as Personal Independence Payment (PIP) designed to help meet these costs.

This disability price tag leaves disabled people with less money to spend on other things, and unable to afford the same standard of living as non-disabled people.

After housing costs have been met, almost half (49 per cent) of disabled people’s remaining income is spent on disability-related costs.

Even for disabled people in work, average monthly extra costs are £492. And across the country costs vary substantially, from an average of £482 in the East of England to an average of £632 in Scotland.

What are the types of extra costs disabled people face?

Disabled people we talk to tell us that they face extra costs across many areas of their lives. These costs broadly fall into three categories:

  • Paying for specialised goods, like a wheelchair, a hoist or adapted cutlery
  • Having to spend more on everyday things, like heating or items of clothing
  • Paying over the odds for things, like insurance or accessible taxis

Marie is just one of many disabled people faced with extra costs. She uses a specially adapted wheelchair which needs replacing, but this would cost her £9,000. Marie and her husband also recently spent around £4000 on a specially adapted kitchen.

The extra costs of disability mean disabled people are less able to build financial resilience. They make it harder for disabled people to get a job, pay into savings and pensions, and participate fully in society.

What needs to change?

We cannot afford to ignore this problem.

Government, regulators and businesses all need to play a role in tackling the extra costs of disability.

We need action to ensure disabled people have the right support to help with extra costs. PIP helps with some of the additional costs of disability – but too often the PIP assessment fails to capture the extra costs many disabled people face.

We want to see an overhaul of the assessment so that disabled people get the support they need to help meet disability-related costs.

We also need to tackle the drivers of extra costs. We know disabled people are often underserved as consumers, leading to increased costs for essential goods and services like energy and insurance.

Today we are calling on businesses and regulators to set out what they will do to ensure disabled consumers are not paying over the odds.

What will we be doing next 

We will be reporting annually on disabled people’s extra costs to assess any changes over time. We will also be publishing research later on this year into the additional costs faced by families of disabled children.

What are your experiences of #ExtraCosts. Share your experiences in our extra costs discussion on the community.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

%d bloggers like this: