Being a young carer can be stressful, but Scope’s online community helped me cope.

Catherine is 16 years old, and a carer to her brother and sister. In this blog she explains how Scope’s online community helped her cope with the frustrations and stress that being a young carer can bring.

Your support can make all the difference. Please will you give a gift today so that a young carer like Catherine doesn’t have to struggle alone?

Not your average 16 year old

If you met me, you’d probably think I’m like any other teenager. But I’m not.

I’m a cleaner, a cook, a carer, a homework supervisor, a role model and a shoulder to cry on. That’s a lot to take on at 16 years of age. I’m a young carer, so I look after my brother, who has Attention Deficit Hyperactive Disorder (ADHD) and autism, my sister, who has mental health issues, and my mum, who has ADHD. Phew!

I get up at 5:30am, and then it all begins, waking up the family, getting them dressed, making breakfast, giving them medication. Life is a balancing act!

Catherine and her younger sister
Catherine and her younger sister

Sometimes it all gets a bit much, so I’m glad I heard about Scope’s online community. It’s great because you don’t have to join a waiting list, or travel miles to talk to someone.

Scope’s online community is a lifeline to people like me.

It’s there 24 hours a day and there’s a whole community of people who’ve been through the same challenges and understand and can offer support.

I’ll never forget my first visit to Scope’s online community. I loved it straightaway – I saw how open everyone was about their feelings and personal battles, and I realised I wasn’t alone.

I’ve turned to the community many times since then, and it made a huge difference when my brother started hitting out at me. It was very hard to take when I was trying my best for him. But people on the community helped me see that it was his way of expressing his frustration – it wasn’t directed at me personally. And that frustration has gone away as we’ve settled into a new routine as a family.

The support I’ve received on the community has pulled me up when I’ve been down, left me in stitches when before there were tears. It’s helped me see that it’s okay to go through rough patches, and that I don’t have to feel guilty about struggling.

Looking to the future

There are so many people out there who could benefit from this 24 hour a day peer support network which is why I’m writing this blog. I want to make sure other families don’t have to struggle like I did and you could help Scope offer a lifeline to families like mine.

Catherine typing on her phone
Catherine using the online community from her mobile phone

Catherine is now helping others

I’m doing everything I can to help Scope myself. Now I also volunteer as an online community champion, to make sure people feel welcome on the site. I want to say thank you (times a million) to all supporters of Scope. Scope’s online community has been a lifeline to my family and I know it can be to others.

Catherine’s story shows that young people’s lives can be changed for the better with a friendly and accessible community, available anytime anywhere.

Donate today to support our work with young carers like Catherine.  

You could help ensure a disabled person and their carer always has someone to turn to. 

“It’s nice knowing my hard work will make a difference” – Caroline takes on the Great South Run

Caroline is doing the Great South Run for Scope in honour of her friend, Vicky, who lost her leg in the Alton Towers Smiler crash.

For this blog, she chatted to us about her reasons for doing it, her journey so far and her determination despite her own injuries.

My friend Vicky was involved in the awful Alton Towers Smiler Crash where she lost her leg. She has had an incredibly tough time adjusting to her new life but has shown outstanding courage and bravery. She has overcome so many barriers and inspired thousands of people.

Despite her own heartbreak Vicky has helped me so much. Her courage has given me courage.

Vicky has sadly faced criticism and trolling online, which does get to her. I want to show her and other disabled people who have to deal with prejudice just how much support they have. It was after having a chat with one of my close friends, that I decided I wanted to do more for charity and for Vicky.

Why I’m supporting Scope

I chose to support Scope because they do such incredible work supporting disabled people and their families. They also campaign for equal rights which I think is amazing. I work as a teaching assistant, working with disabled students at a college in Cornwall. It’s an incredible job but sadly I see the prejudice they face every day, so the work that Scope does is very close to my heart.

caroline-2You’ve got to believe in yourself

Running or walking 10 miles doesn’t come naturally to me, but I know I can do it if I work at it. With help from my friends I have done lots of training for the run.

I have foot injuries so to run it would be very difficult. walking will be tough enough but I am determined to jog some too. I know that I can make it. You’ve just got to believe in your own abilities.

I organised a big fundraising event in my local pub

Tyacks Hotel have been so supportive and cannot thank them enough for all their help. I got so many incredible donations from so many local and national companies.

With all the amazing support from my family and friends it was a brilliant night and we raised £471 in just 3 hours. I was so pleased that I could do this for Scope and Vicky.

Some people didn’t think I’d be able to get great prizes or thought that it wouldn’t raise much. But I emailed a lot of companies, put myself out there, and got so many incredible prizes. The determination to help my friend was all I needed.

It’s nice knowing my hard work will make a difference

I get to help amazing charities and have an opportunity to do something great for myself and others. I feel like my hard work will make a real difference. Knowing it’ll be tough only makes me more determined to do it. I am very excited and just know it will be an incredible day.

My advice to anyone out there looking to take part in an event or raise money is don’t doubt yourself, we can all do things that we never expected.

If you feel inspired by Caroline and want to support Scope by taking part in one of our events, you can read more here.

“I want to make the extraordinary seem ordinary” – disability and employment

At a fringe event at the recent Labour Party Conference in Liverpool, organised by Scope and the Fabian Society, senior Labour Party parliamentarians, policy experts and disabled people shared their experiences of employment. The group considered how to ensure disabled people played a key role in the changing world of work.

The panel consisted of Shadow Secretary of State for Work and Pensions Debbie Abrahams MP, Neil Coyle MP, General Secretary of the Fabian Society Andy Harrop, Scope’s Head of Policy, Research and Public Affairs Anna Bird and Lauren Pitt.

In this blog Lauren talks about her experiences of employment and her thoughts following the panel event.

I lost my sight at the age of 13. When I graduated from university in 2015, I began what turned out to be a long and difficult job hunt. I applied for over 250 jobs but despite being qualified, I only got interviews about 5% of the time. The interviews were generally very negative about my disability. They’d ask “How are you going to be able to do this job?” and I would think “Well I can, otherwise I wouldn’t have applied” but it’s difficult if you’re not being given the chance.

“In phone interviews, when I mentioned that I was disabled their attitudes changed. Potential employers were suddenly less interested in what I had to say.” – Lauren, in her opening speech

I eventually got offered a job and I’m really enjoying it.  When Scope invited me to speak at this event, I immediately said yes. For me, none of the process of getting into work was easy. I came because I wanted to make that process easier for other people. I’m keen to change attitudes towards disability in the workplace and by sharing my story, I want to help disabled people have the confidence to get jobs.

I want to make the extraordinary seem ordinary

People think it’s extraordinary that disabled people work but I want to make the extraordinary seem ordinary. We want to contribute to our communities as much as an able-bodied person. We have no reason not to be and we shouldn’t be stopped from doing that.

Employers may see disabled people as having certain disadvantages, but those disadvantages can actually be very advantageous. We have to be problem solvers, we’re determined, resilient and we want to work.

A massive barrier is people’s attitudes. People see us in the Paralympics and think “oh look at that blind person running” but we can do so many other things. People need to see the variety of jobs that disabled people are in.

The panel sit behind a white table in front of a screen that reads "An inclusive future"

Policies and support need to be better

At the Job Centre, there was the assumption that I only wanted part-time work. Well, no. I might be disabled but I can still work full time. I want to contribute as much as anyone else and I can.

Information about the support available also needs to be better. Technology is essential in supporting me to do my job as well as anyone else can and that’s provided by Access to Work. But it took four weeks after my assessment for my equipment to arrive – four weeks where I wasn’t able to do my job. Also, research done by Scope showed that around half of people said they don’t know about Access to Work or don’t know how to get it. Well, that needs to change. Without Access to Work, there’s no way I could do my job.

Stories show people what’s possible

We need to share success stories and use them to show disabled people and employers that disability doesn’t have to be a barrier. Stories change people’s minds. Scope’s End the Awkward campaign has changed people’s minds already – people often talk to me about it. By seeing disabled people doing things, you believe that it’s possible.

It’s also important that disabled people believe in themselves. When you see others succeeding, you think “Maybe I can do that”. Commonly more negative stories are shared and people see those and think it’s not going to happen. I know towards the end of my job hunt I wanted to give up. I just didn’t think I was ever going to get a job. I knew I could do it but by the end it was like “Can I?”

A massive thing for disabled people is confidence. The world is not an easy place to live if you’re disabled – you’re faced with barriers left, right and centre. But there are also ways to overcome those barriers. And it’s about learning those ways and being given the right support. You get ground down by applying for jobs and not getting anywhere.

Lauren crouching down with her guide dog, both wearing robes at her graduation ceremony
Lauren and her guide dog at her graduation ceremony

Sharing knowledge is really important

Another thing I would love to see would be the option to have a mentor – either another people who is disabled and currently in work or an employer. Sharing experience is a massive thing because it builds up that self confidence and that knowledge. You’re not going to learn something unless you’ve got someone showing you. I want everyone to see that disabled people can work just like everyone else. My line manager went for an interview and said that she worked with someone who’s blind and they were like “How?” and she was liked “Well, like this…” and that’s the thing, it’s a transfer of knowledge.

I also think it’s important to educate people when they’re young, which is something Scope are doing at the moment, with their Role Models programme. The more people see at a younger age, the better their attitudes will be. Sometimes older people say it’s amazing that I’m working – well, it’s not really that amazing and they wouldn’t say that to my brother, who’s sighted.

Working together to change the future of employment

Today was great. Everyone on the panel spoke about the many things that can be done to help disabled people find and stay in work. We also spoke about things that aren’t being done that should be – some things that can easily be implemented and other things that may be more difficult and how funds can be better used.

I really enjoyed having this opportunity to talk to disabled people, politicians and people who worked for different charities, all of us coming together to share the knowledge and ideas that we have, to help change the future for disabled people in employment.

Scope has partnered with the Fabian Society to produce a series of essays that look at how the modern and future world of work can be inclusive for disabled people.

To read more about Lauren’s journey into work, read her previous blog.

If you have an employment story you would like to share, get in touch with the Stories team.

The hidden sex lives of disabled people – End the Awkward

Alice is a disability rights activist and journalist. As part of our End the Awkward campaign, she shares her views on the media’s portrayal of sex and disability.

Content note: this blog references offensive disablist language and contains discussions about sex.

Disabled people don’t have sex, do they? It certainly seems that way as our sex lives are so rarely represented in the media, if at all.

Have you ever seen a disabled person having sex in a film, TV program, or a mainstream porno? Me neither.

We are a generation which loves to talk about sex, so why aren’t disabled people part of the conversation? Why are our sex lives are being hidden? And why are we being desexualised? We are consistently portrayed as people who never get our leg over and this couldn’t be further from the truth.

However, things have started to change with Maltesers recent ad campaign. The brand launched three disability-themed adverts which premiered on the opening night of the Paralympic Games, and one in-particular really stood out to me.

A text description of the advert is available at the end of this blog post.

Three women are sat around chatting about sex and one (who is a wheelchair user) talks about getting frisky with her boyfriend who didn’t complain when her hand started spasming! Funnily enough Storme Toolis who plays the part is thought to be the only disabled actor to ever have had a sex scene on UK TV.

It is hard to put into words just how happy I was to see this advert, it reminded me of the conversations I have had with friends leaving them in stitches when sharing my sex stories.

Disability in the bedroom

I have spasms and seizures, and I have them when I’m in bed. This can make sex both awkward and absolutely hilarious, not too different from non-disabled sex right?

In the past I’ve had to explain to a partner that my legs weren’t shaking because I’d had an orgasm – they were going into a spasm.

I’ve also come round from seizures before and not remembered who the person on top of me was. You can’t really get much more awkward then that, especially when you’re in a long term relationship!

Disability certainly keeps sex interesting and there are also some perks. Having so many seizures during sex forces me and my partner to have regular breaks which means it usually lasts much longer then it would without them. And telling people I’m disabled early on is also a great dickhead-filter, especially when online dating. You’d be amazed at how many people have stopped talking to me once they discovered I was disabled, but this has meant I’ve only ever met up with open minded people who I know I can trust to get into bed with.

Having barriers in the bedroom also means disabled people have to be more creative and our sex lives are often far from vanilla, trust me. Look at Scope’s A to Z of sex and disability if you want to find out more!

End the awkward

Maltesers are paving the way to end the awkwardness around sex and disability, but there is a long way to go yet. This is evident from some of the online comments left on the advert such as: “Retards who have sex are disgusting.” And: “I don’t really understand how disabled ‘people’ can be sexual beings without having souls.”

These attitudes need to be challenged, and the best way to do that is for more brands and broadcasters to follow in Maltesers footsteps. The more disabled people’s sex lives are accurately represented, the better perceptions will become. I hope one day I can turn on my TV and see disabled characters (played by disabled actors) having sex and for it not be out of the ordinary.

Beyond the bedroom

But this goes beyond sex, Scope’s 2016 Disability In The Media Study found that 80 percent of disabled people felt underrepresented by TV and the media on the whole.

It seems like this is only addressed for a few weeks every four years when the Paralympics comes around and this needs to change. We are the world’s largest minority group and we need representation every day of the year.

So decision makers, please don’t stop broadcasting about disability just because the games are over, let’s keep it on the box, and while you’re at it why not start representing disabled people’s sex lives too?

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

Video description: Three women sat outside around a picnic bench. The person telling the story is a wheelchair user and she is holding a bag of Maltesers in her hand. As she tells the story she shakes the bag and chocolates spill over the table. Her friends looked shocked at first but then everyone laughs. Text reads: “Look on the light side”.

“He’s really fit but it’s a shame that he speaks like that” – End the Awkward

James Sutliff is a Personal Trainer. In 2008, he developed a rare neurological disorder known as dystonia. His speech became slurred and the feeling in his hands deteriorated.

As part of End the Awkward, James told us the awkward moments he’s found himself in and how he thinks we can avoid these cringe worthy situations.

Attitudes and awkwardness

It’s hard to comprehend because physically to look at me, my disability is quite silent. I don’t generally ‘look like a disabled person’. I’m not in a wheelchair, I don’t have a missing limb. So people are often shocked. They think I’m taking the p***.

I think a lot of people can be quite nervous, it can be embarrassing on either end, because the person who’s speaking to me wants to understand what I’m saying but can’t and I feel awkward so I don’t want to carry on talking. It happens quite a lot.

I don’t think it’s that people can’t be bothered to listen all the time. It’s just maybe a little bit of embarrassment on their part, feeling nervous around not knowing how to approach it.

Some people are great. I like it if people just say “sorry mate can you say that again?” But being polite, as people generally are, they’ll just nod their head or whatever.

James, a young disabled man, lifts weights in a gym

How people can be less awkward

I do get quite a bit of female attention, probably because I work out and stuff. When they approach me and talk to me, they soon realise that I have dystonia and there have been a few instances where people make comments that are not very nice.

I was in a nightclub with my wife and this woman approached me. She was obviously quite physically attracted to me and then I started talking. She quickly finished her conversation and rejoined her friend. She obviously cottoned on that my wife was with me in the club and said to her “He’s really fit but it’s a shame he speaks like that”. That was it, she was in trouble. My wife gave her a really bad telling off!

James, a young disabled man, lifts weights in a gym

What not to do

You do get people staring. I don’t think they realise that they’re doing it but sometimes when I clock them I feel like saying “Stop it! If you want to know what’s wrong, come and ask!”

Children are great though because they basically have no boundaries. They’ll say “Why do you speak like that?” and I love that because they’re so honest. They’re just curious. And we’ll say, “Well it’s because of this” and they just go “Oh, okay then”.

I think as a nation we’re overly polite. But what people don’t realise is they’re actually being ruder by sitting and staring or nudging and whispering with their friend next to them.

Be open, have a sense of humour and don’t ignore me. Just talk to me and remember, I’m the same person I was before.

For more tips on sex and dating, check out the films and stories on our website.

You can also read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story.

Do disabled people have enough choice and control in social care?

The NHS published its latest statistics on social care this month, which showed improvements in many areas for disabled social care users. But dig a little deeper into the data, and you’ll find that there is still room for improvement, with many people reporting they need more choice and control in their lives.

There is a general rule at the moment in social care that things are not going so well for the people who use this essential service. Research Scope undertook, for example, found more than 50 per cent of participants felt social care does not support working age disabled people to live independently, and in separate research on integrated care we found this system needs to get better at taking into account the needs of working age disabled people at the planning and delivery stages so it can work for all social care users, not primarily for those over 65.

We know that a significant proportion of young disabled people – those between ages 17 and 30 – can suffer ‘significant setbacks’ as a result of inadequate care, which includes not getting the care they need for extended periods, or finding it difficult to access employment. So with this year’s latest survey results on social care user’s perceptions of the service published two weeks ago, are things getting better? Perhaps.

What we found

Every year NHS Digital brings out its Personal Social Services Adult Social Care Survey. The survey asks around 70,000 social care users what their views are on a number of aspects of the service, of which approximately 97.5 per cent identified a condition or impairment as their prime reason for needing social care. We drew our findings from this group.

What we found from our research is that broadly speaking, many disabled social care users see the system as delivering a decent standard of care. That care supports them to have more control over their lives, as well interact with others socially (which many who don’t rely on social care support take for granted).

When asked whether care helps them to have a better quality of life, a staggering 92 per cent said yes. And over 60 per cent said they felt very good or good about their life at the moment. Few would say these aren’t top marks for social care’s score card.

Digging a little deeper

It’s only when you dig a bit deeper into the data that more still needs to be done to improve outcomes for disabled social care users. On questions about choice and control, a significant proportion (34 per cent) reported as having as much choice and control over their lives as they wanted, and 90 per cent said care and support services help disabled people to have control over their daily life. This still leaves two thirds (66 per cent) of respondents who felt they could have more control over their lives, and 6 per cent having no control over their daily life.

On social contact, levels are good but there is room for improvement. Generally respondents said that they had as much social contact as they want (45 per cent). But for 32 per cent of respondents, the amount of social contact they had was just “adequate”, meaning for some there is a need for improvement, and the remaining 22 per cent said they were not getting enough or felt socially isolated.

What next?

It is really promising to see progress is being made and satisfaction is on the up in some areas of social care. Central government and local authorities still have some work to do to drive those numbers up across the board, and we recognise this starts by increasing funding into social care in order to make the good intentions of the Care Act achievable.

Later this year, we will publish a report on young disabled people’s experiences of using support services to live independently. Read more about our work on social care on our website. 

What End the Awkward means to our supporters

End the Awkward project manager Neal Brown, who has a hearing impairment, asks some of our disabled supporters what End the Awkward means to them and how it changes attitudes around disability. 

End the Awkward is just one of a number of behaviour change campaigns that have been run in the UK, tackling a range of social issues including racism, homophobia, and drink-driving.

These campaigns use different tactics for getting people’s attention. Stonewall’s ‘Some People Are Gay. Get over it.’ campaign was confrontational; NHS Stop Smoking adverts have used shock tactics with graphic imagery.

With End the Awkward, we’ve always taken a tongue-in-cheek approach, because we know that people don’t mean to be awkward, so we don’t want to point the finger.

We spoke to some of our supporters about what the End the Awkward campaign means to them, and have shared their responses in this post.

“Humour breaks the ice”

Carly smiling for a photograph
Carly

Carly Jones, an autism advocate, filmmaker and author, told us why she thinks humour is effective:

“Humour breaks the ice, it captures interest, it relaxes people and gives them permission to be human. In return they get to hear and really listen to what makes us human too.”

Behind the light-hearted tone, there is a serious message. We know from our research that two-thirds of people feel awkward around disability, and that over a third (34%) are actively avoiding disabled people because they are worried about being patronising.

Liam wearing radio headset, smiling at the camera
Liam

How did we get here? Liam O’Dell, a student, blogger and radio show host, shares his thoughts:

“For a long time, disability has always been seen as a mystery or a taboo. Everyone worries about slipping up or saying the wrong thing to a disabled person and everything becomes awkward when it doesn’t need to be. The lack of discussion involving disabled people is a long-term issue which has led to rude, embarrassing or laughable stereotypes being created.”

Real-life experiences

But End the Awkward wouldn’t be successful if it wasn’t based on the real-life experiences of disabled people. I’ve had many awkward moments in my life where people assume that I’m being rude because my hearing impairment means I’m not engrossed in the conversation.

But I shouldn’t have to disclose my impairment when I go to the barber or the pub just to avoid being judged by strangers. When people find out about my impairment things do change. People start to feel embarrassed and become overly apologetic. I feel like I have to reassure them that it’s okay.

Layla posing for the camera
Layla

It’s not just me. Layla Harding, a Masters student, uses mobility aids and has experienced awkward situations as a result.

“End the Awkward is hugely important. When I use mobility aids I endure these awkward moments time and time again. Just yesterday I was encouraged to “get training for the 2020 Paralympics”, told that my having a disability was a “such a shame because you’re a pretty young thing”, and was congratulated for getting “out and about” on the tube.

During situations like these it’s extremely frustrating because there is so much you want to explain to people and teach them but it’s difficult to get it all across. That’s why I think End the Awkward is important because it hopefully makes people see disability in a different light.”

I don’t think that anyone wants to be awkward around disabled people, or that anyone chooses to be awkward. And disabled people can feel just as awkward as non-disabled people. End the Awkward helps by showing that we are not alone in our awkwardness, and that it doesn’t take a lot to be less awkward and make life better for all of us.

Over the last three years, End the Awkward has done more than challenge the awkwardness around disability. It has also played a role in empowering disabled people like business woman, Kelly Perks-Bevington, helping them to feel more confident and to achieve more.

Kelly, a young disabled woman in an electric wheelchair, smiles and waves at the camera
Kelly

“When I was first invited to do End the Awkward, I was skeptical. I never talked about my disability, as to me, it felt like it didn’t exist! And, although it still feels like that, I’m also proud to be disabled and I have a new confidence around the whole subject.

I think by working with Scope on End the Awkward I’ve really dealt with those confidence issues and embraced who I am! Wheelchair and all!”

People ask why we run End the Awkward when we could be lobbying government to directly improve the lives of disabled people. Well, we are still campaigning for disabled people alongside End the Awkward. But we will have more success campaigning if we have society on our side, and that starts with changing attitudes.

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

“Yes I Can, If…” – campaigning for better disability access

Will Pike is a games developer from London whose parody of Channel 4’s Superhumans advert has gone viral with over half a million views. Tens of thousands of people have signed his petition to ask the two high-street chains which feature in the film for better access.

In this blog, he shares the story behind his campaign and talks about the changes he’d like to see as a result. A text description of the video is available at the end of this blog post.

In 2008 I went to India, on the way back home we had a stop over in Mumbai and the hotel I was staying in was attacked by terrorists. 168 people died, my spine was injured I am now paralysed below the waist.

I’ve been in a wheelchair for eight years now and in that time have been through ever emotion under the sun. I have days when I just can’t be arsed with the barriers and negative attitudes. I made this film because too many shops and restaurants are effectively off limits to wheelchair users like myself.

Inspired by the Paralympics

After the London Paralympics I was expecting there to be a big shift in places becoming more accessible but it just hasn’t happened. Two weeks before this year’s games started I approached my friend Heydon Prowse about the idea and he got a team of people together to produce the film. Errol Ettiene directed  it and did an incredible job, the team turned a good idea into a slick, professional-grade commercial.

It tops and tails with Paralympic references because I wanted to show how day to day life can feel like Paralympic event for a wheelchair user. But whilst the whole thing was inspired by the Paralympics, these issues still remain for disabled people now the games have ended. This is bigger then just me having a unique experience, this is a global issue indicative of a massive absence of consideration for disabled people. My experiences aren’t isolated and sharing them makes them more powerful and potent. It turns individual struggles into a social issue.

The film isn’t in any way a criticism of the Superhumans ad, but it could only ever do so much. Channel 4 started a relay race about disability awareness and they passed the baton on. They didn’t know who they were passing it on to, but it just so happened it was me. I’m leveraging the awareness their brilliant ad created to further the message. My film couldn’t exist without theirs and whatever success we get is their success too.

Will sat on a sofa against a brick wall

The petition

I’ve been asked why I chose to focus my petition on American Apparel and Caffè Nero and the honest answer is, it was just their lucky day. We were filming on Tottenham Court Road and it just so happened they were the shops that didn’t have wheelchair access. But it was also important that we didn’t pitch this campaign at one-off shops because whilst they have a responsibility, it’s the big chains that have a major responsibility and the ones who are neglecting their civic duty. It could also have a domino effect across all their stores.

It’s not that people are fundamentally thoughtless, it’s just that it’s simply not in the social conscience to be considering these things. It’s only when someone comes along and questions access that things will change.

The people I spoke to in the film felt bad and wanted to help but they are purely innocent in this whole thing. It’s the companies they work for who are responsible for disability access and inclusivity. It’s irresponsible to expect hapless shop assistants to have to deal with that situation. I hope American Apparel and Caffè Nero can see it from that perspective too, it will protect their staff from these embarrassing and awkward situations that they shouldn’t have to go through.

Reasonable adjustments

The Equality Act states that all buildings and public places have a responsibility to make reasonable adjustments to ensure disabled people are not disadvantaged when accessing their services.

However, in terms of holding public places accountable, it’s actually down to the customers and patrons of that establishment to draw attention to their inadequacies. If that premises doesn’t then do something about their lack of access or facilities, that person is then responsible to bring them to court. Which basically means that all those people with disability – who may or may not have had their benefits cut, or are finding it difficult to gain employment, or even struggling to leave the house – are the ones who must embark on an inevitably time-consuming and costly legal case.

We really hope that this film, though aimed at Caffé Nero and American Apparel, is able to shine a light upon a flawed and, frankly, ridiculous system. It should not be the responsibility of each and every disabled person to flag up a high street chain; it should be the responsibility of the Government and Councils to assess disability access, educate businesses, and ensure funding is in place for reasonable adjustments.

People may think little things like step-free access won’t make a difference to the majority of the population, but it makes a massive difference for a selective few which in turn has a positive influence on the relationships we have with non-disabled people. In turn the whole community will be accessible and better for everyone. And that’s where the #AccessForEveryone hashtag came from.

Will in his wheelchair outside a restaurant where there's a step

What’s next?

We just have to wait and see! I haven’t been contacted by Caffè Nero or American Apparel, but I wonder whether someone is going to bring it to the big bosses. One way I’d like that conversation to go is that the big boss turns round and says: “Are you telling me we haven’t got step free access in our Tottenham Court Road branch?! Right, heads are gonna roll!” That’s far fetched but I am an optimist at heart.

Both brands have a real opportunity to turn this bad situation good by handling it well. If they acknowledge they were wrong and make changes they can come out of this smelling of roses and will get so much good publicity from this. I will be giving them every chance to handle this magnanimously, with humility, and with a real ownership. But if they don’t, we will do everything we can to highlight their ineptitude.

They really can lose a lot of business because of this. Some people have been commenting saying they will boycott these shops until they make a change and if that becomes the consensus, if that becomes the rallying cry, then together we can change a lot.

You can visit change.org to sign the petition or follow Will’s progress.

Will’s story is also a great example of disabled people being ‘bold and loud’ as consumers – something called for by the Extra Costs Commission. Led by Scope, this was an independent inquiry that looked at ways to drive down the additional costs faced by disabled people. Next month a report will be published reviewing progress with the Commission’s recommendations for tackling extra costs.

Video description: Paralympics billboard, zooms into the word “superhuman”. Alarm clock turns to 7.00am. Man laid in bed opens his eyes, sits up, and smiles. He spins around his bedroom in his wheelchair. Plays plastic toy trumpet. Dances into the bathroom. Sits in the show, miming the lyrics into the shower head. Puts a shirt on, grabs his hat with a reaching tool. Leaves his house, flipping hat onto his head. Wheels down the a busy high street. Tries to enter Caffè Nero, wheels crash into a step. Tries to enter Pizza Express and speaks to a waitress about accessible toilet facilities. Does a wheelie and dances down the street. Goes into American Apparel and talks to staff member. Wheels into a pub, stops himself at a flight of stairs. Then wheels down the ramp, sits with a friend both clinking their pint glasses. Text reads “Leaving the house can feel like a paralympic event for wheelchair users. change.org/accessforeveryone”.

“It’s nice you people are allowed to work” – End the Awkward

In this blog Scope’s Campaign Manager Rosemary Frazer talks about the reaction to our End the Awkward campaign. She tells us why she’s convinced that using humour helps to tackle negative attitudes. 

“It’s nice you people are allowed to work”

A cab driver said this to me when he was bringing me to my office recently. My non-disabled friends were stunned when I told them. My disabled friends simply give a sympathetic and knowing smile. Whether through innocent ignorance or lack of thought, some non-disabled people say and do the oddest things around disabled people.Rosemary smiling for the camera

I’m writing this blog in response to some of the comments and criticisms I’ve read about Scope’s End the Awkward campaign, which aims to challenge attitudes towards disability.

I should ‘out’ myself first. I am Campaigns Manager at Scope. I am writing this on my day off and it is very much my own thoughts and opinions. (Anyone who knows me will know I can’t and won’t be told by anyone what to think or say on disability issues or anything else!)

Some people have commented that our latest H.I.D.E content is patronising and others have said that people don’t behave that way. In my experience, nothing could be further from the truth.

Whilst no one has ever hid in a stationery cupboard or got under a table to avoid me, I have experienced very odd and sometimes very hurtful and disabling treatment as a wheelchair user in the workplace. Let me share a few of my own experiences.

“How would you feel working with a disabled person?”

  • There was the colleague whose entire tone of voice would change when speaking to me, as though I was a 7-year-old
  • There was the line manager who told me ‘It was a great privilege to work with people like you.’
  • There was the occasion where a team I was about to join was asked how they would feel about working with a disabled person
  • There was the senior manager who would ruffle my hair each time he saw me and accompany this with ‘Hello lovely young lady.’

I felt so alone and isolated. No one else in my workplace said anything or thought such behaviour odd or wrong in any way. Of if they did, they weren’t prepared to say anything.

This has had an impact on me and no doubt on my career and promotional opportunities. In the past when much younger I have left jobs as a result of such behaviour. At other times I have felt so demotivated that I felt like just giving up!

Of course I wouldn’t tolerate such nonsense now. But that has come with experience and building up my confidence to challenge such things. It also helps that I have allies that will support me should anything like this happen today.

Does humour work?

When I started working at Scope in 2013 I was a bit sceptical about End the Awkward and thought we should be focusing on other things like poor social care support, lack of access, or disability hate – rather than these tongue-in-cheek films which seemed rather silly. Of course Scope does work hard on those other areas and have done so in the past. There’s also a lot of great work being done by other organisations and by fantastic disabled activists too to address these issues.

I’ve read research findings on attitudes towards disability and it really saddens me that we have not moved on in our views towards disability in the way we have on race, sexuality or gender. End the Awkward addresses that.

It also takes the issue directly to a big section of the population who don’t engage with disability equality and too often don’t know any disabled people. We’ve found that humour is a great way to engage this audience who might not have previously paid attention to disability.

The Golden Rule

We know that from the feedback we receive. Attitude change is crucial to getting better policies and practices in place to give us the opportunity to flourish in the workplace, to play our role in communities and enjoy the same life chances as others.

When I speak with younger disabled people they tell me how much they love End the Awkward. Non-disabled campaigners tell me how impressed they are with the approach we have taken. I have seen how humour has been used successfully to address other areas of discrimination and I honestly believe it can work to address the sometimes suffocating prejudice I have had to endure throughout my life.

So H.I.D.E, don’t hide. Just don’t treat us differently than you would want to be treated yourself and if you have your own ideas on how to improve attitudes towards disability then please share them with us. We always want to hear from you!

Want to get more involved in End the Awkward? Share your awkward stories with us

“There’s not one single experience of being disabled” – creating our End the Awkward campaign

End the Awkward is back for a third year and once again we’ve based our campaign on the real life experiences of disabled people. Over the past few months we’ve gathered ideas and tested content, through focus groups and conversations with a variety of people.

In this blog, two of our End the Awkward ‘testers’, Jack and Jamie, talk about why it was so important to be involved, their thoughts on the campaign and some of their own awkward stories.

Jamie

I was excited when I was asked to participate in a focus group discussing the future of End the Awkward. The group organisers were keen to hear our opinions and clearly valued our input. We discussed not only the message and overall impression that we thought End the Awkward 2016 should convey, but individual details such as the setting, dialogue and disabilities portrayed. As the group contained people with differing impairments, the discussion highlighted many points that we may not have thought of individually. There is not one single experience of being disabled and I was pleased that our different impressions could help avoid a tired or clichéd message.

Jamie, a young man with glasses and a beard, smiles at the camera

Like many disabled people, I’ve experienced awkward moments around other people who don’t know me very well. This often means a well-meaning person saying completely the wrong thing, or polite people, scared of doing something rude, avoiding me altogether. Sometimes, this makes me feel guilty, as if I was responsible for their awkwardness. I know this is ridiculous, and that I don’t control others reactions, but this limited communication makes me look internally for an explanation. End the Awkward, for me, suggests that this tension does not have to happen. Though embarrassing situations may still occur, instead of worrying about them, we can point to them and laugh.

Several years ago, I was out for a birthday meal with friends, when the staff come over to sing Happy Birthday. Even the sight of this happening to other people makes me embarrassed, so I was already cringing when the waiter asked me to stand on the table. As my impairment includes invisible mobility problems, I couldn’t do this, but the staff mistook this as shyness and insisted that I at least stood on my chair. After some panicked looks from friends and a brief explanation about being disabled, the staff looked absolutely mortified. I told them that they had given no offence and they sang anyway, though slightly nervously. In the end though, I got a free slice of cake, which tasted like a silver-lining.

Jack

With the next phase of End the Awkward on the horizon, what better way to capture some of those life experiences from disabled people themselves, to ensure the campaign is reflective of everyday challenges we might encounter.

Jack smiles at the camera

In July, a selection of people came together to shape some of the latest developments in a focus group. Facilitated by the creative agency George & Dragon, the main purpose of the discussion revolved around new film concepts, which will be targeting young audiences in particular. As shown by past research, one fifth of 18-34 year olds have admitted to actively avoiding a disabled person in conversation. In one way or another, everyone had at least one memorable moment that felt socially complicated.

Whether it revolves around nights out, failings on public transport or people just making life harder than needed, there are still many barriers which make this a necessary campaign. We all agreed that the disabled person in each of these scenarios needed to be seen in an empowered role and not to appear as a victim in any sense.

While I’m not disabled physically, the preconceptions of people about my interests and abilities, as well as reluctance to disclose my condition in many situations means that I sometimes have to meet demands of people like there are no limitations. One day I would like to think there will be no need to always explain basic autism facts, but until then, we need campaigns like End the Awkward to start some of those tricky conversations.

Want to get more involved in End the Awkward? Share your awkward stories with us

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

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