“So, did you walk into town? Oh! I meant ‘wheel into town’ – well, you know what I mean…”

Guest post from Zoe Lloyd, a disability awareness trainer with Enhance the UK.

Disability awareness trainer Zoe LloydWell, this is awkward. As a wheelchair user, I have been in this kind of situation many times. Personally I don’t find it awkward,
but I’m pretty sure the person who says it wants the ground to swallow them up.

When trying to talk to a disabled person, lots of people feel hyper-aware about the words they are using, and worry about saying the wrong thing.

It really doesn’t have to be this way – most disabled people I know don’t have a massive chip on their shoulder about language and terminology and can laugh about things. (Obviously offensive language and derogatory remarks are another matter).

I’ve also experienced the ‘does she take sugar?’ scenario. I had been going to the same hairdresser for years. But when I became a wheelchair user, suddenly one of the workers couldn’t look at me and had to ask my mum how I liked my tea!

To think she had known me before, yet the fact I was sitting in a wheelchair made her act differently towards me, was quite hard to understand.

No wonder, then, that some strangers in the street find it hard to meet your eyes.

I am a trainer for Enhance the UK, a charity which – among other things – delivers disability awareness training to schools and workplaces.  All of our trainers are disabled, and we are successful, fun, positive people.   We make our training fun and interactive – and as honest as possible. We can give candid answers from our own personal experience and help people challenge their fears, concerns and awkwardness around disability.

Most fear is a product of ignorance, and we hope our training helps people to look past their colleagues/pupils/clients’ disability and see them for who they are as a person.

Honest, open communication with disabled colleagues is far better than making assumptions. That way we can get over any awkwardness within minutes, rather than worry about it for months.

And stumbling over those everyday phrases usually makes things more awkward rather than less. For example, people have said to us that they’ve felt bad after saying things like ‘Do you see what I mean?’ to a blind person.

Maybe over time, you might end up avoiding such phrases automatically with your blind colleague – but if you forget, it’s fine!

The greater inclusion of disabled people on TV over the past few years has helped show people that disability isn’t something to be scared of. Channel 4’s The Last Leg is a perfect example. Barriers are being broken down, and long may that continue.

Now, I’m just going to take my dog for a wheel – sorry, a walk.

Deaf Girly’s end of awkward

Guest post from Deaf Girly who lives in London. 

When I saw Scope’s End the Awkward campaign featuring the girl with hearing aids in the bar, I was transported back to my twenties when I was new to London and out every night, and single.

Now, dating in your twenties is awkward enough. But for me, deafness added another layer of awkward to the ‘flirting in bar’ scenario. Take the night of four kisses. There I was dancing away when a man started talking to my ear. He was cute. But I had no idea what he was saying. So I took his face and moved it so I could lipread. And he kissed me. Ten minutes later, it happened again, with a different guy. And again. And again. Until I had four guys in one club who all thought I was into them. Problem is, kissing guys before they know your name is not usually the best way to get a date. So I remained single, albeit with a lot of kissing experience.

After a year of this, I signed up to online dating. I chose not to put my deafness on my profile and instead tell guys when I met them. My first date was in a noisy bar with a mumbling man. The effort of trying to hear him over the background noise was exhausting. At 10pm I was asleep, head on the bar, my gin and tonic untouched. The man slunk out, never to be seen again.

This trend continued. I met guys in dark bars where I just nodded and smiled like a nutter. I went climbing with a man who kept yelling instructions at me when I was halfway up the wall – helpful. And, on one occasion, I told a guy I couldn’t hear and he made his excuses and left.

But it wasn’t all bad. One guy took me to a silent movie. Another told me he could sign before showing me the standard (and slightly rude) sign about bulls that everyone says they know.

And then last summer I met a guy at a friend’s summer party. He walked into the kitchen where I was putting the icing on a lemon drizzle cake. I was so distracted by him that I drizzled the floor and my feet, completely missing the cake.

I didn’t tell him about my deafness as he had an easy-to-hear low voice. But then as night fell in the garden, it became harder to hear so I told him. His reaction was wonderful. He asked a few questions and then paid attention to make sure I could hear him – sitting by a candle to light up his face and looking at me at all times

Nearly a year on, the wonderful man continues to be wonderful. He’s attentive without being patronising, helpful without being suffocating and accepts that my deafness is a part of me in a way I wish I could have done when I first learnt I was deaf.

With him there is no awkward. Proof along with Scope’s campaign that it really is possible – and time – to end the awkward.

Find Deaf Girly on Twitter and at deafinitelygirly.com

Ending the awkward in relationships

“My boyfriend googled ‘how to kiss a wheelchair user’!” #EndTheAwkward #ThrowbackThursday

Guest post from Emily Yates, a 23-year-old travel writer and accessibility consultant. We first published Emily’s blog in May 2014 when we first launched our End the Awkward campaign.

As we’ve been celebrating kissing this week, we thought it was a good opportunity to #ThrowbackThursday to Emily’s awkward story.

As an accessibility consultant and travel writer currently based in Rio de Janeiro, most of my awkward stories revolve around travel – especially the joys of flying. I’ve been fortunate enough to always get off the plane and see my wheelchair waiting for me, but there is one particularly poignant trip to Dubai with my twin sister that I will always remember.

We got on the plane, settled down armed with booze, chocolate and films. I was so proud of myself for going a whole seven hours without needing to go to the bathroom. Then, with a glass of wine too many, I had to concede. After calling the attendant for the in-flight wheelchair, I was told there was no such equipment onboard. I was shocked, and was offered no extra help to get to the bathroom.

So, I defiantly crawled down the length of the aisle until I got there, with an audience both smiling in pity and gawping in disgust. After emptying my bladder, getting over my wounded pride and dehydrating myself for the rest of the journey, the real smack in the face came when the plane landed and the in-flight wheelchair was brought right to my seat… Oh, and then when we arrived at Dubai airport for our return flight to the UK with a good three hours to kill, we were ushered right past all those amazing designer shops and straight to a ‘special assistance’ bay, where we had to sit and wait until our gate opened. Pretty sure my very gorgeous and fashionable sister was put off flying with me for life after that episode!

But my ‘awkward’ experiences don’t end with travel. My boyfriend and I, who have been friends since we were 16, still giggle about his confession to googling ‘how to kiss a wheelchair user’ before we got together… I have just googled it now and, not surprisingly, got results such as ‘bend down’ or ‘lean in’. My personal favourite has to be ‘say you want to tell her a secret, then go for it’ with a winky face for added bonus points. Luckily, he didn’t follow that advice…

This leads to my next point. My boyfriend probably did that research to try and prevent any awkwardness between us, and who can really blame something like that, if it’s not been experienced before? We disabled people, with the help of great campaigns such as Scope’s End the Awkward have a little duty of our own.

And that’s to speak out if we find a situation awkward, dissatisfying or downright offensive. Of course in a perfect world, there would always be a chair nearby for a tall guy to sit on when talking to someone of a shorter stature or a wheelchair user, and everyone would instinctively know how to support somebody with a visual impairment who needed extra guidance. We do not live in that perfect world.

But we do have the ability to make improvements on these things through spreading awareness. Most of all, the ability to ‘end the awkward’ by treating people with certain conditions in a way that makes them comfortable can be taught, and we all can be a part of that teaching. It is teaching like this that can ensure another wheelchair user doesn’t have to dehydrate themselves on the way to Dubai!

Read more awkward stories. If you’ve had a similar experience we would love to know about it! Submit your awkward stories, and we’ll publish our favourites on our blog and social media. 

Top tips for including your deaf friends or colleagues in conversation

Guest post from Vicki Kirwin. Development Manager for Audiology and Health at the National Deaf Children’s Society.

This week (19 – 25 May) is Deaf Awareness Week and it provides us with an extra opportunity to highlight the importance of good communication. Scope’s End The Awkward campaign is also a brilliant platform to raise awareness of the issues many disabled people face on a daily basis.

Thousands of deaf teenagers have told the National Deaf Children’s Society that improving their friends’ understanding of deafness and finding ways to communicate is really important to them.

There are 45,000 deaf children and young people in the UK and many go to a mainstream school where very often they are the only deaf person in that school. This means some of their classmates don’t know how to communicate with deaf children. More than three in four teenagers who have not met a deaf person told us they have no idea how to start a conversation with a deaf child or young person. These communication barriers can make socialising and school life tough for some deaf young people.

A couple of years ago we worked with deaf young people to produce our Look, Smile, Chat Campaign, to help deaf and hearing teenagers communicate with each other. We produced lots of great resources and you can find these at the link below. The best part is that, just as End The Awkward highlights, a small change to the way you communicate with a deaf person can make a really big difference.

Our top tips for helping to include your deaf friends or colleagues in conversation are:

  • Remember to include deaf people in your conversation
  • Make sure the person you are talking to knows what you are talking about
  • Face the person when you are talking to them and stay still so that a deaf person can lip-read you
  • Talk normally, not slowly
  • If you’re in a group, talk one at a time
  • Be creative with your communication. There are lots of ways to chat, you could write it down or text for instance

We all like to communicate and join in conversations, so this week get involved in Deaf Awareness Week and help break down the communication barriers that many deaf people experience every day. You too can End The Awkward.

Visit Look Smile Chat for further information and resources.

Find out more about Ending the awkward at work.

The Care Act is welcome, but there’s plenty of unfinished business

Post from Caroline Hawkings, Public Policy Advisor at Scope.

This week, we’ve reached a significant milestone for adult social care in England.  After many months of debate, the Care Bill has become the Care Act through Royal Assent, meaning that the primary legislation is complete.

In the words of the Minister Norman Lamb, the Act’ represents the most significant reform of care and support in more than 60 years and at least on paper, there are many things to welcome about the new Act.

  • For the first time adult social care law has been brought into a single Act, replacing disparate and sometimes outdated laws
  •  Local authorities have a duty to promote a person’s well-being, which is comprehensively described in a ‘well-being principle’ covering different aspects of life
  • The Act introduces a national minimum threshold for getting care and support, which all local authorities must adhere to, aiming to end the post-code lottery of the current system where local authorities decide their own level. Currently, eligibility for support is assessed against a framework called Prioritising Need, also referred to as the Fair Access to Care Services criteria (FACS). There are four levels ‘critical, substantial, moderate and low’, the majority being at substantial or above.

Other positive features include: an emphasis on providing personalised services, prevention, personal budgets, improvements to care planning and access to advocacy in certain circumstances

But, the key question for disabled people remains whether they will be able to get the care and support they need to as live independently as possible?  Social care is vital to promoting a person’s dignity, well-being and independence and one in three people using social care are working age disabled people. Increasing access to social care is a key part of improving disabled people’s living standards.

There are two crucial inter-linked decisions which have yet to be finalised, which will determine the success of the Government’s landmark piece of legislation.

Firstly, although the Act establishes a national minimum threshold for social care, the level at which it is set will be determined by eligibility criteria contained in regulations (secondary legislation). These criteria will decide whether a person is in or out of the formal system.  The criteria have yet to be finalised and are due for public consultation at the end of May.

The Government has stated that their intention is to maintain eligibility at ‘substantial’ under the current Fair Access to Care (FACS) criteria.  So, the worrying prospect is one of a more uniform threshold which is consistently too high, where care continues to be restricted. This means that thousands of disabled people are likely to be shut out of the benefits which the new Care Act brings.

Secondly, the Act sets out the legislative framework, but the funding allocated to actually implement and apply what it says, is largely dictated by the Treasury. The tight rationing of care is largely due to historic underfunding and budget cuts.  Due to funding pressures, research from the Care and Support Alliance shows that 97,000 fewer disabled people who would have received social care five years ago, now receive no support.

The most frustrating thing is that it needn’t be like this. A lower eligibility threshold is good for disabled and older people and has benefits for the economy. Modelling by Deloitte, in the Ending the Care Crisis report, has shown that a £1.2 billion investment in establishing a lower national eligibility threshold would lead to £700 million saving to Central Government and £570 million saving to the NHS and local government.

Scope, working with other members of the Care and Support Alliance have been consistently urging the Government to introduce a lower eligibility threshold, backed up by sufficient funding to so that local authorities can afford to implement it properly.

If the Government is to realise the bold and welcome ambition of the Care Act, it’s essential that disabled people up and down the country get the support they need to live independently and live well.

Scope Community Services turns one

Scope Community Services Birthday Cake

Recently I visited Scope’s Community Services in West Norfolk as they celebrated their first anniversary.

Sara Brown, who is the Community Organiser, matches volunteer befrienders to disabled people who would like to get more involved in their community. The service helps people to do things locally including accessing community activities, travelling independently, and making new friends.

Speaking to a number of people who had benefited from the service helped me to understand how they had gained in confidence from having a volunteer befriender. Tom, who attended the one year celebration event, having built his confidence, is now going out after school for the first time in ages.

The volunteers too said that they enjoyed making a difference to the lives of those they befriended. The age range of the volunteers was impressive with them ranging from those in their 20s to 60s.

Find out more about Scope Community Services for West Norfolk and our service in Nottingham.

He’s going to tower over me in a few months

Last year Marie and Dan became the proud parents of Mark, via a surrogate. Every parent wishes their child wouldn’t grow up so fast, but for Marie and Dan it brings greater challenges. At three foot six and with brittle bone disease, Marie must adapt quickly as Mark is likely to tower over her before his first birthday.

Marie holding her baby Mark
Marie and her baby Mark

Mark is almost six months old and he is getting bigger every day. It is so exciting to see him growing and all the things he can do now, but it also means I can’t support him on my own as much as I did before. I mean, he weighs over a stone now and I only weigh three stone nine myself!

In the first three months or so after his birth, I could pick him up by myself and give him a cuddle. Whilst I can still sit him up, wind him and dress and change him I can’t physically lift him anymore. This is where team work comes in and he is actually learning to help mummy move him already, smart little guy!

He is going to tower over me in only another three or four months. It was inevitable, but I am surprised how quickly it has happened. It’s been hard because I want to be as close to him as possible and when he’s upset (he’s teething at the moment), he wants his mummy to pick him up to comfort him.

But we are already finding ways to adapt. My Personal Assistant (PA) or Dan will put a big ‘V’ shaped bolster cushion around me so that I can support Mark while I’m comforting him or feeding him. They will also help to lift him when I am changing his clothes or giving him a bath.

I can still manage to feed him and change his nappy. He does kick me in the ribs sometimes though, which we have to look out for because of my condition. I have had a slight rib fracture since he was born. Although I don’t know for certain that was Mark, so I won’t blame him!

Nonetheless it is going to be a challenge, as he gets bigger and he starts kicking and falling about even more. But that is something we will just have to deal with and hope that, as he gets older, he will understand that there are things you can do with Daddy, but you can’t do too near mummy.

I do feel frustrated sometimes, like when Mark is in pain with his teeth he likes to be walked around and that’s something I just can’t do. I can’t get up on my own two feet, let alone hold him and walk around. But there will always be things that I won’t be able to do, so I just have to focus on the things that I can do.

I don’t think people realised I would be able to do as much as I am. Even Dan’s dad said “What are you going to do if he hurts you?” Well, if he hurts me, it’s just something that’s going to happen. I could go to the toilet and break my arm. I can’t stop helping Mark just because he might hurt me. You just get on with it and deal with it if it does happen, like any other mum.

Marie with Mark
Mark is now six months old and weighs more than a stone

I don’t feel different from other mums, and I have been accepted wonderfully at the local children’s centre where I take Mark for baby massage. All I need is a strong pair of arms, so if I drop Mark’s nappy bag, Dan or my PA will pick it up, or if I need to move Mark, they’ll lift him for me. I change Mark and feed him and sooth him and know when he needs to be burped. Dan’s mum said that I was a natural mum, which was quite nice.

I just want to be the best mum I can be for Mark because it does go too quick. It feels like only yesterday that he was born and soon he will be bigger than I am. I am treasuring every moment and just doing what I can to be the best mum I can, and it feels like I am doing a great job.

Marie is blogging about being a disabled mum for Scope and has been raising awareness by talking to That’s Life! magazine and Sunday People

I know you’re trying to be nice – #100days100stories

Amanda’s six-year-old daughter Lucia has cerebral palsy. In this guest post from May 2014, Amanda talks about how people’s attitudes can make life awkward for her family. We’re republishing Amanda’s story here as part or our 100 days, 100 stories campaign

Amanda and her husband Anthony with Lucia, Georgia and Roman
Amanda and her husband Anthony with Lucia, Georgia and Roman

The moment other parents hear that Lucia has cerebral palsy, we have to deal with their preconceptions about what disabled people are like. We get people talking loudly and slowly, and people saying ‘What’s wrong with her?’ The answer is that nothing is wrong with Lucia. She just has cerebral palsy, and sometimes uses a wheelchair to get around. ‘Lucia’s wobbly legs’, as our other two children, Roman and Georgia, describe it! You get almost pitying looks from other parents – and you know, I wouldn’t change Lucia for the world.

Support online

I joined Scope’s online forum soon after Lucia was diagnosed, and it has been brilliant. Sometimes, when Lucia is ill or tired, we do feel sorry for ourselves, and having other parents to talk to and keep us positive is a huge help. You can also pick people’s brains for practical advice on things like special needs statements, disabled badges and mobility aids. We were very unsure about getting a wheelchair for Lucia, but people on the forum said to go for it – and it has been amazing. It has really improved our quality of life.

Don’t see the wheelchair

A couple of times, people have said, ‘You know, if you didn’t tell me I’d never have guessed Lucia is disabled’. It’s really not what we want to hear. When it comes to disability, you just adapt – we don’t need to pretend Lucia isn’t disabled. Sometimes we get stopped when we’re out shopping, and people make a massive fuss of Lucia’s wheelchair – ‘Ooh, look at the little girl, look at the wheels, aren’t they pretty?’ I know people are trying to be positive when they give us extra attention, but it’s really awkward for us. We much prefer it when no one stops us, no one cares, everyone just moves on. We know you’re trying to be nice, but we would much prefer if you didn’t even see the wheelchair. Even if you’re saying something positive, I’d respect you far more if you saw the person in the chair instead.

At Scope we believe that disabled people should have the same opportunities as everyone else, so let’s end the awkward.

Find out more about 100 days, 100 stories and read the rest of our stories so far. 

Share your awkward moments

On the Scope blog we regularly hear from people about attitudes to disability. It can be serious. But more often than not it’s just a bit awkward – what you could call innocent ignorance.

We want to shine a light on the awkwardness that many people feel about disability, and want to hear from you.

Have you been in an awkward situation?

You can share your awkward stories with us in the comments section below, with the hashtag #EndTheAwkward, or email us at awkward@scope.org.uk.

We’ll share them online – so let us know if you want to be anonymous.

Some of our favourites so far

“I was talking to someone in a wheelchair with amputated legs. I was so overly conscious of not saying the wrong thing that I barely said anything at all!”

“I was in the city centre once when this guy walked past me. He was so engrossed in staring at me and my wheelchair, that he didn’t notice the lamp-post he was about to walk into…”

“I met a woman who has restricted growth at a friend’s place. She asked me if I fancied a cup of tea. I had a vague and distant memory of having been told that you should never offer a disabled person help, unless they ask for help. So I just watched her struggle with the kitchen that was literally over her head, until she gave up.  I wouldn’t have hesitated to ask someone who was say, 4’11”, if they needed a hand with things out of their reach. But for some reason I felt like it was legitimate to apply a different rule when someone’s 3’6”. Cringing now.”

“Whenever I go to an appointment, I can’t stop myself smirking and giggling when the receptionist invariably tells me to ‘take a seat’, then notices the wheelchair and gets all flustered!”

“I was in a newsagents. a guy was silently hovering behind me, when suddenly without a word he grabbed hold of my chair and wheeled me to the opposite end of the magazine rack! Turns out i was in the way of his mags, but who knew! Haha!”

Share your experiences with us in the comments section below, with the hashtag #EndTheAwkward, or email us at awkward@scope.org.uk

Let’s end the awkward

By Richard Hawkes, Scope’s Chief Executive.

In 2014, life’s still tougher than it needs to be if you’re disabled.

Across society disabled people face an extra costs penalty that must be tackled, many need better social care in order to live full and independent lives, and disabled people want to work but too often are stopped from achieving their ambitions.

Half of disabled people have experienced discrimination in shops and 4 out of 10 have often missed out on a job because of what employers think about disability.

What underpins all of this is attitudes and understanding.

Current attitudes towards disability

Today we are publishing a new report about attitudes in Britain today which shows that most of the public are uncomfortable speaking to a disabled person.

It turns out – in true British fashion – that we feel awkward and don’t know how to act.  The majority of the people we spoke to said they would worry about speaking about disability in front of a disabled person, with many worrying they would say something inappropriate or use an offensive term by mistake.

One of the big surprises for us was that younger people are more likely to have negative attitudes as older people.  It’s led to some 18-34 year olds actually avoiding talking to a disabled person because they weren’t sure how to communicate with them.  It looks as though there’s a generational issue we need to tackle and that’s a big lesson for us.

There is a positive side to this in the research we’ve carried out.  Many people said that simply getting to know someone disabled, or getting advice from disabled people, would make them feel more confident when meeting a disabled person.

We are serious about helping change attitudes – so serious we changed our name 20 years ago.  So we’ve looked hard at what more we can do, especially taking into account the evidence about younger people.

End the Awkward

Today Scope is launching a new campaign to ‘End the Awkward’ – to out the awkwardness that lots of people feel in everyday situations, and begin to shift the attitudes of a younger generation who might not have thought a lot about disability.

We’re launching a series of three adverts (watch below), which will premiere on national television this Sunday.  They’re fronted by the brilliant comedian Alex Brooker who presented “The Last Leg”.

Alex guides people through different awkward situations they might face, like “do I bend or not bend down to talk to a person who uses a wheelchair”, and helps people see what they could do in that kind of situation.

We’re also publishing some practical tips, to help people navigate a whole range of situations.  At the heart of it it’s about seeing the person not just someone’s impairment, treating someone with respect and getting to know them. Throughout, the campaign has been developed with a range of disabled people and the younger people we’re trying to reach, so it’s as true as possible to people’s real experiences and disabled people’s advice.

Comedy and seriousness

We don’t want to point fingers and we’re using humour as an approach, partly because we hope it will appeal to younger people, and because we’ve been inspired by disabled comedians like Alex, Jack Carroll and Francesca Martinez.

End the Awkward deals with the issues in a lighthearted way, but it of course touches on the other more serious issues of how we treat disabled people in Britain in 2014.

This campaign is just one part of our wider work.  We speak out against negative attitudes – like when the Mayor of Swindon recently described disabled people as “mongols” – and we continue to campaign on lots of the big issues disabled people tell us are affecting their living standards.

What do you think?

We’ve launched this campaign specifically to get a new, younger generation thinking about what we can do to include disabled people more in our lives.

If we get less hooked on the fact that someone is disabled, and instead just get to know them as people, I think we can end the awkward and make a step towards Britain being a better country.

Watch the films below, share them and find out more about the campaign.  I’d love to know what you think.