Category Archives: Inside Scope

The things that people say never go away

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

Marie is a college tutor, wife and mother whose experiences feature in the report. In this blog, she revisits some funny and not so funny moments, and talks about the impact of negative attitudes.

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. I’ve experienced negative attitudes throughout my life – some awkward moments you can’t help but laugh at, and others which have actually held me back from living my life.

Because I’m disabled I couldn’t possibly have a love interest

I can’t tell you the number of times people have bumped into lampposts or tripped over on the street because they are too busy staring at me. When I’m out with my husband Dan, it can be even worse.

Once, when we’d just started dating, we were on the way home from the pub, holding hands and we stopped to look at the stars. What could be more romantic? A kiss seemed like the natural thing to do.

After a moment, I became aware that a police car was driving past very slowly. The officer was staring out of the window and was concentrating so hard on us that he ended up mounting the pavement and crashing into a street sign. We couldn’t believe it! A few seconds later he sped off, clearly embarrassed.

We still laugh about that incident now. We have to laugh – if we took these things too seriously it could start to mess with our heads.

Marie and Dan kiss outside the church on their wedding day
Marie and Dan share a kiss on their wedding day

We often hear people making comments. People don’t blink an eyelid if they see any other couple kissing in the street but because I’m in a wheelchair and Dan’s not, we become an immediate target. I think when people see us, they can’t quite believe that a guy who isn’t disabled could have fallen in love with me.

If Dan and I aren’t being affectionate, it’s a different story. Trying to convince people he’s my husband takes some doing. One time, a hospital consultant asked me if Dan was my dad! When I said no, she presumed he was my brother, then my uncle, and finally my carer. I let her go on and on before she petered out. It’s that  assumption that because I’m disabled I couldn’t possibly have a love interest.

I was told “We don’t have any jobs 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 “Why do you want to work?” and “We don’t have any jobs for people like you.” There was no help or aspiration.

Being told not to bother working 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.

Woman wheelchair user holding a sign saying "#workwithme"
Marie features in Scope and Virgin Media’s employment campaign, Work With Me

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.

This report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

Our new report shows disabled people still face negative attitudes

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

The way other people act towards us can have a huge impact on how we view ourselves and our role in society. An occasional moment of rudeness or being ignored may be a minor inconvenience or annoyance. But the more it happens, the more the impact adds up.

For many disabled people, this will sound all too familiar. Whether it’s outright hostility, or seemingly minor incidents that add up to a hostile atmosphere, prejudice remains a common occurrence. Negative attitudes from others can be one of the biggest barrier to disabled people living life the way they want, and more needs to be done to tackle them.

The research in this report was carried out on behalf of Scope by the National Centre for Social Research as part of the annual British Social Attitudes Survey.

What is the Perception Gap

According to our new research released today, one in three disabled people still feel that there’s a lot of prejudice against disabled people. But only one in five non-disabled people think the same. This is what we’re calling the disability perception gap.

It may seem self-evident that disabled people face prejudice, but many non-disabled people do not understand the scale of the negative attitudes towards disability.

Some difference wouldn’t be surprising – disabled people have to live with this prejudice every day, whereas non-disabled people may only ever know about it second hand.

But this gap is growing. In 2000, there was only a slight difference between the views of disabled and non-disabled people when it came to disability prejudice. Over the last 20 years, however, the gap has trebled.

Illustration of the gap in perception between disabled and non-disabled people
“The gap between disabled and non-disabled people’s views of prejudice has trebled since 2000” – Disability Perception Gap

There is now a real danger that many non-disabled people think that disability prejudice has been tackled long before it has been, which could block further attempts to improve the situation. Instead of this complacency, we need to make sure that the experiences of disabled people are listened to and put at the heart of any programme designed to address negative and harmful attitudes.

Being close to disability can help

When it comes to improving understanding, it seems that nothing beats personal contact with a disabled person. Whether it’s a colleague, a friend or a family member, having a relationship with a disabled person makes a real difference to non-disabled people’s attitudes.

For example, 10 percent of people who claim not to know any disabled people think of disabled people as ‘getting in the way’ some of the time – an opinion held by only 3 percent of people with a disabled colleague.

However, a third of the population claim not to know a single disabled person. This means that their views on disability are far more likely to be based on stereotypes than any knowledge of what life is like for a disabled person.

Any attempt to improve attitudes will have to increase people’s understanding of what it means to be disabled, and the challenges that disabled people face on a daily basis.

Driving change

To do this requires a concerted effort across society to tackle prejudice and negative attitudes towards disabled people. This should include a variety of spaces; from the classroom to the boardroom, and all points in between.

This is why we are calling for efforts to get more disabled people into work to be amplified. With only 7 percent of people saying they have a disabled colleague, a million more disabled people in work could make a real difference to people’s views of disability and disabled people.

It’s why we’re calling on the media to do more to ensure that disabled people and their experiences are properly represented on screen. By supporting disabled talent, they can show what it means to be disabled in 2018.

Such efforts on their own will help, but they won’t be sufficient. We need a coherent approach to improving attitudes across all areas of life. Earlier this week the Government announced a new working group to look at the issues facing disabled people.

We’re calling on this group, and the rest of Government, to take prejudice seriously and launch a new cross-departmental disability strategy, focussed on improving attitudes and reducing prejudice towards disabled people.

What comes next?

This report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

Could you be part of the next generation of disability campaigners?

We are looking for aspiring young campaigners to join Scope for Change, our campaign training programme for disabled people aged 18 to 25. It’s a free, six-month programme, and no previous campaigning experience is needed. Find out more and apply to take part.

Disabled people face many barriers to equality – whether it’s negative attitudes, unnecessary extra costs, inaccessible environments or a lack of support in education or work. But we know that it doesn’t have to be this way, and that young disabled people have the drive and skills to help make change happen.

We first launched the Scope for Change programme in 2016 to support young disabled people gain the skills and confidence to campaign on issues they cared about . This first group of campaigners set out to tackle a variety of issues: encouraging museums to be more autism-friendly, making British Sign Language lessons at university more accessible and affordable, gaining step-free access to local transport, and raising awareness of hidden impairments.

Ellie, who took part in 2016, campaigned for greater accessibility at nature reserves. Here’s what she had to say about her campaign:

“I want to further educate those working in the conservation sector to make sites of natural interest as accessible as possible: providing ramps up to bird hides, having blue badge parking spaces, braille or audio information boards, allowing assistance dogs, and accessible toilets… Opening up the senses in particular for those with profound and multiple disabilities is so important – and where better to do that than a national park?”

It wasn’t just their campaigns that benefited – many of the group said that being part of Scope for Change gave them a sense of solidarity with other disabled people and boosted their confidence. No longer feeling like they were working alone, the campaigners could collaborate, share experiences and learn from each other.

Why get involved?

Now Scope for Change is back for a new generation, to tackle more obstacles on the road to everyday equality. We want disabled young people to be empowered to make decisions about their lives, influence change, and make real progress in their communities and wider society.

Over a six-month period, we will support the Scope for Change group to plan, launch and their own campaigns to make change on the issues that matter to them. This will be backed up with ongoing support from Scope staff and a three-day residential training event to learn all the skills needed to create a winning campaign strategy.

Does this sound like the opportunity for you? Apply for Scope for Change now – applications close on Monday 28 May.

When I became disabled no-one would hire me, but Scope helped me find a job I love

Simone never had a problem looking for jobs before she became disabled. She had good references, experience and qualifications, but when she developed repetitive strain injury, it seemed like none of that mattered. After 15 months of getting no responses, Simone had lost her confidence and her hope. In this blog, she talks about how Support to Work helped her turn things around.

I developed repetitive strain injury a few years ago, a condition which affects my arms and my hands. My employer did try to make adjustments – things like speech recognition software and an adapted keyboard – but it got to a point where being on a computer even for 20 minutes caused so much pain. So, I made the decision to change career.

I didn’t think finding another job would be too difficult. I knew I wouldn’t be able to do lots of computer work, but I had so many transferable skills. But after 15 months of applying for jobs with no response, I lost hope. It got to the point where I was just applying for anything.  It didn’t matter what it was or what the pay was, I was just desperate to work. But I still couldn’t find someone to employ me.

A woman stares into the distance, in front of a bus stop
Disabled people, on average, have to apply for 60% more jobs than non-disabled people.

It was probably the lowest point of my life

It really knocked my self-worth and my self-confidence. You start to feel like you’re not worthy of being employed despite having a great career history. I felt like all my qualifications had been for nothing.

I felt lost, and when you get to that point, you need someone who can sit down with you and go “Okay, so these are your strengths and these jobs would suit you.” But I couldn’t find anyone willing to help. One agency told me “It’s unfortunate but employers will look at you as a liability.”

Then I got in touch with Scope.

The right support turned my life around

They were really quick to get started. When the employment adviser, Zaid, looked at my CV he said, “Wow, this is brilliant. I’m confident that we can help you.”

A women holder a file with office behind her

“I felt a sigh of relief. It felt like someone finally had my back, after months of feeling so alone.”

The main thing that Support to Work helped me with was my confidence. Because my confidence had taken such a huge knock, I didn’t feel like an employer should employ me. I didn’t think I was worth it. But when Zaid made so many nice comments about my CV and gave me so many ideas for what I could do, I started to believe in myself again.

I think I’d been coming across as negative on applications, but he helped me find the right approach to tell employers about my condition and talk about what I can do with simple adaptations.

With my new-found confidence, I applied for a role as Operations Assistant and I got an interview straight away. The interview went really well and I was offered the job! I felt uplifted. I was so happy. I was smiling for days.

For a long time, I couldn’t see a future but Support to Work really turned my life around.

Two women and a man chatting in an office, holding mugs
If you’re a disabled job-seeker, Support to Work can help you build confidence and develop skills for your job search.

My advice for employers

I love my job and I feel like my employers have exactly the right attitude. At the interview, I talked about my condition and they said, “You’ve got the skills we’re looking for, it won’t be a problem”. It put me at ease straightaway. I wish all employers thought like that when it came to hiring people.

Once in work, employers should make conversations about adjustments easy. In my current role, I feel confident that I could ask for changes if I needed them. I’ve got an open communication with my manager so if I do have any problems we can find a way to work around it. I also think they should be open to doing things differently. At work, I’m not afraid to say, “Look this is a bit much, can we do it a different way?”

Another piece of advice is to take advantage of schemes like Access to Work, which paid for my adaptive equipment – things like dictation software and an adapted keyboard – it hasn’t cost my employer anything and it enables me to do my job well.

Ultimately, I want employers to look beyond someone’s impairment or condition and focus on the skills and experience that they would bring to the role. Just because someone is disabled, doesn’t mean they won’t be an asset for your organisation.

Support to Work is funded by Virgin Media as part of our three year partnership to understand and tackle the issues disabled people face getting into and staying in work.

Our ambition is to reach one million disabled people with employment information and support by the end of 2020, so they can get into work, stay in work and realise their career ambitions.

If you’re a disabled job seeker, you can sign up to Support to Work on Scope’s website.

Tell the Government about your experiences as a disabled consumer

Last week the Government published a consultation called Modernising Consumer Markets, which is looking at ways to improve how different markets work for consumers.

We know that disabled people often face challenges as consumers, which can drive up the cost of essential goods and services. Below we outline what this consultation is about and some of the changes we want to see for disabled people.

What is this consultation looking at?

This Government wants to hear about ways to improve consumers’ experiences across different markets. This includes both regulated services such as energy and insurance, as well as private sector businesses selling things like food and clothing.

Whilst the Government wants to ensure that markets are competitive, there is an acknowledgement in this consultation that no one should be exploited if they lack the time or capacity to engage, and that “vulnerable” consumers need to be protected.

Some of the proposals the Government is considering including making it easier for consumers to compare the performance of businesses, and simplifying terms and conditions when consumers enter into new contracts. The Government is also interested in the role that data could play in helping consumers get the best deals or receive targeted support and advice – recognising the need to balance this with preserving privacy for consumers.

Improving disabled people’s experiences as consumers

There are almost 14 million disabled people in the UK, whose combined household expenditure, the so-called ‘purple pound’, totals £249 billion a year.

However, we know that disabled people often face challenges as consumers, which can drive up the cost of essential goods and services. Our research shows that on average, disabled people face extra costs of £570 a month related to their impairment or condition.

In some instances, disabled people are unable to access the products or services they need. For instance, our research shows that over half (55 per cent) of disabled adults have been unable to make a purchase because of an inaccessible website. Tackling these barriers is key to ensuring consumer markets work for disabled people.

Disabled people commonly tell us about experiences of poor customer service or a lack of disability awareness from businesses. We want to see a more consistent approach from businesses to supporting disabled consumers, particularly within regulated markets.

It’s also important that consumers are able to seek redress when something goes wrong. However, disabled people say that they are often put off making a complaint because of things like the length of time it can take and a lack of trust in the process. These challenges need to be addressed as part of this consultation.

How you can get involved?

This consultation is an opportunity for you to share your consumer experiences. The deadline for responses is 11:45pm on 4 July 2018.

You can email a response to ConsumerGreenPaper@beis.gov.uk

If you’d prefer to send a written response, you can write to:

Consumer Green Paper Team
Department for Business, Energy and Industrial Strategy
1st Floor, Orchard 3
1 Victoria Street
London
SW1H 0ET

What Scope will we be doing

We will be submitting a response to this consultation, highlighting the changes needed to ensure disabled people receive a fair experience across different markets.

We want to ensure this consultation reflects the issues facing disabled people as consumers. You can share your experiences with us by completing this short survey.

For further information about the consumer green paper, please contact Ben Wealthy in the policy team on ben.wealthy@scope.org.uk.

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

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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.

“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.

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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.