Category Archives: Real life stories

“Disability is full of compromises and workarounds”

Edith was diagnosed with Multiple Sclerosis when she was 16. As her condition started worsening, it was essential that she found a social care package that met her needs.

In this blog, Edith writes about how finding the right social care package has enabled her to focus on the other important things in life.

Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.

A young woman smiles whilst sitting on a sofa, typing on a laptop
Edith sitting on a sofa with her laptop

I use a wheelchair full time, but the ‘book ends’ of my day are especially hard. Lying in bed overnight, my whole body stiffens up and takes a while to stretch out and co-operate. Come evening, fatigue has turned me to jelly.

Add in flare ups, temperature variations and colds or viruses. Each day is a surprise. My carer starts by stretching my legs in bed and helping me to a sitting position. Using a standing frame I transfer to my wheelchair, and in a subsequent set of routines I get dressed and ready for my day. The process is fairly cumbersome and long winded, but we go the fastest we can, totalling around an hour.

Night calls follow a similar set of processes, all made quicker and easier if I’m having a ‘good day’, but following a routine which we know well enough to follow without fuss.

It means I can focus on the rest of my life

My social care calls are crucial. Do I want to have company first thing in the morning? Would I love to get up and make a cup of tea then go back to bed for a few hours? What about those unexpected evenings out where one drink turns into many and you just re-adjust your 12 hour plan accordingly.

The alternative is being bed bound, in some residential home, or relying on my parents (while I can, then what?). So when it works, my social care support enables everything else.

With the essentials of personal care covered, I can focus on the rest of my life, the nights out, holidays, work, credit card bills… just life. To me social care is as necessary a part of my functioning as any of my healthcare, if not more so.

I’m frustrated by the wires I’ve had to untangle to get social care in place, the lack of transparency in funding and set up. It feels more vulnerable than the NHS and prescription meds, yet to me should be treated in the same way.

It’s all a part of my life I’d rather not have to incorporate, but fundamental for me to achieve, do, live or anything else.

Read more from Edith on her blog.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so join the campaign today to end this inequality.

Looking after working and service dogs in the extreme heat

Amit Patel is a speaker for Guide Dogs. He’s guided by Kika – who has become *very* popular on social media.

Unfortunately, Kika’s been having a few problems recently, coping with the hot weather – so Amit writes about his experiences below, and adds some tips for keeping your dog cool in the summer heat.

We can’t control the weather

As a Guide Dog owner, I know full well that the weather is one of those things that you cannot control and can really throw your routine out of the window. Extreme weather is challenging, whether it’s really hot or really cold, it will have an impact on your dog and how they work. But you can prepare for it.

In winter, there is the constant worry of grit getting in a dogs paws (the salt can burn them) and snow covering the ground means that a Guide Dog cannot tell the difference between the road and the pavement or anything hidden underneath in the snow. And let’s not even talk about the black ice!

The past few weeks however have seen the opposite extreme – with temperatures hitting over 30 degrees in the city and trains and tubes getting significantly hotter than that, I’ve had to make some tough decisions to ensure Kika’s well-being.

A Labrador with guide dog harness sitting in the aisle of a underground train
Kika the guide dog rides on public transport

It’s hard to keep cool

Kika is a beautiful white Labrador, but that comes with a very thick fur coat, which, coupled with her leather harness, means that she gets warm quickly. As if the outside temperature wasn’t hot enough, the pavements also heat up and can burn a dogs paws easily.

I rely on Kika to keep me safe, but if she’s hot and bothered, or struggling in the heat, she may find it hard to concentrate and as a consequence, won’t work as well. I’ve also found that like any of us, if she’s made to do something that she doesn’t like or doesn’t feel comfortable doing, like working when its uncomfortably hot, she’s less likely to want to do it again in the future.

I’m dependent on Kika to be able to get out and about in London but recently I’ve had to adjust my routine to avoid peak time trains. I’ve been going in extra early when its cool and coming back early before the evening peak. I’ve also taken alternative routes which have been unfamiliar and which require assistance – this makes journeys longer than usual but can also cause anxiety due to the change in routine. I’ve consciously been taking things slower with plenty of breaks for us both throughout a journey because of all this.

In our experience, extreme weather exacerbates issues on public transport too. Somehow lots of trains have been delayed or cancelled, with more last minute platform alterations than usual recently. Some days it’s been too hot to even attempt the trains during the daytime so I’ve had to take taxis home – adding extra time and expense.

Father with his guide dog and son standing outside number 10 Downing Street
Amit, his son, and Kika, outside number 10!

We still have to work

Like most people, we have to get to work regardless of the weather. I’m fortunate that my clients have been very understanding, I’ve managed to juggle meetings and work from home much more which has meant that Kika hasn’t had to work as much in the heat.

For the days that we have had to travel into London, we start our day even earlier with a good groom for Kika – this helps remove the shed hair, allowing the skin to breathe and trapping less heat in the coat. Kika has a very pink nose which is prone to sunburn, so I also apply a little sun cream (dog safe, of course) to her nose. The challenging part of this is that she always tries to lick it off! I also make sure Kika’s had plenty of cold water before leaving and I carry ice cubes in her water bottle so that it stays cool for as long as possible.

I’ve found that most restaurants and cafes are more than understanding given the extreme heat and will always provide water and ice for your dog if you ask for it. Stopping somewhere so that Kika can cool down is a great excuse for me to also take a break and have a cold drink.

Some people ask why I don’t just leave Kika at home? After all, I have a white cane and I’m trained to use it! But it’s not as simple as that. Kika isn’t a pet, she’s my Guide Dog and she’s been with me 24/7 since we qualified together almost 3 years ago. As she’s a working dog, she comes with me everywhere – to work, restaurants, the hospital and even holidays abroad. She’s never been left home alone for this very reason.

Kika - the Golden Labrador sat between seats n a train panting
Kika on public transport

Amit’s top tips for keeping your working dog cool in the heat:

  • Avoid working your dog unless you absolutely have to – can you work from home or get other assistance to help you get to work, e.g. a taxi or support worker
  • Carry plenty of water for you and your dog
  • Go early when its cooler, come back pre rush – as trains and tubes are considerably warmer
  • Groom your dog more frequently to remove shed hairs which stops heat being trapped in their coats
  • Sun cream on the dogs nose
  • Paddling pool! Great for cooling down kids as well as dogs
  • Ice cubes – both in water but they also make great treats in this heat
  • If you feel that your dog is overheating or struggling to cool down, then hose them down with cool water or apply a cold wet towel to their underbelly and paws. If in doubt, please call your vet.

You can follow Kika and Amit on Twitter – we highly recommend that you do.

Young disabled people share their hopes for equality

Regardless of who we are or where we are from, we must work together to ensure that every member of society has an equal chance to participate in our democracy and to have their say.

Carly Jones MBE hosted an EqualiTeas event at Scope, inviting young disabled people to meet, talk about equality and democracy, eat cake and decorate biscuits! An event championed by UK Parliament, aiming to bring UK communities together to explore what equality means to people.

Carly is an autism advocate who has been tirelessly campaigning for equality for years after her own battle to get a diagnosis.

Here’s Carly’s story.

I asked Scope if they could support a celebration of the “equality of voting rights”, EqualiTeas event at their new Here East offices at Queen Elizabeth Park, Stratford. Here I am talking to the Scope team about the event.

Scope team filming Carly who is sat on a sofa.
Carly being filmed.

My hope in asking Scope and I to deliver a get together, was we would be in a better position to amplify the voices of disabled people in the UK. When Scope said they would love to host this event and provide social media and PR staff, plus camera people and scope story tellers all free of charge, I was elated and so grateful!

We created our idols on gingerbread

Guests from different age ranges, genders and disability, arrived from local and not so local areas. We ate cake, and drank tea. Younger guests decorated gingerbread into whatever their idols or ambitions were, which included an astronaut, a mortician and Phil Marsh from Scope.

A younger guest sat at a table painting gingerbread
A younger guest painting (with icing) their idol onto gingerbread.

Huge EqualiTeas posters were used to sound board our needs and hopes for equality. We debated as a group our answers to such questions as “what does equality means to you?” and “have you ever stood up for equality?”.

Our passion for the subject shone through and we noted our responses on the posters themselves.

Carly sitting on the floor writing answers to questions on to the Equaliteas posters
Carly writing answers to questions on the Equaliteas poster

Why this event is important

The reason Scope and I held this event was to ensure that disabled voices were heard in democracy. To inspire a younger disabled generation to not be afraid to step forward. There are approximately 13.9 million disabled people in the UK. We are an extremely large minority group.

To ensure that no one is left behind, our voices and suggestions must be taken seriously. We must have a seat around the democratic tables to fully represent the UK appropriately.

The group sat on chairs discussing equality.
We are having an in-depth conversation about equality.

Young people would like equality to work

Many wanted shops to be more disability friendly. For some their hope was a fair chance at education. Safeguarding and sex education for Autistic girls was of high importance to many, and more representation from the Black, Asian, Minority Ethnic disabled community. Some wanted to get the job of their dreams because they were talented and they deserved it not just because they fitted a diversity box ticking exercise by an employer.

That in a way surprised me, we are often given the impression that young people of today, disabled or not, have some form of entitlement. To hear a young person not want special treatment but simple equality to work struck me as incredibly articulate.

Cakes with Equaliteas sticks in them in the foreground. Guests are in the background.
Equaliteas cakes

We all had fun

The guests seemed to really have fun. Parents of the younger guests got in touch to say how proud they were of their young person and to give thanks to Scope and myself which of course is incredibly kind and heartwarming.

Check out more of the story and photos on Instagram, watch our film of the event.

By @CarlyJonesMBE

What’s next

Next up is the Global Disability Summit 23 and 24 July again at Here East, Queen Elizabeth Park, Stratford with representatives of Include Me Too (Parmi Dheensa), the Department for International Development, British Council and UK government.

There is often an illusion that when the UK talks disability we do not include our own. This could not be further from the truth. There will be many British disabled advocates and activists participating at the Global Summit for others and our own countries benefit. It’s an absolute honour to be among them and share the voices, wants and needs of others is an absolute pleasure of a duty.

Take part in the conversation at #DisabilitySummit #NowIsTheTime.

If you have a story you’d like to share, get in touch with the stories team.

If you want to get involved in campaigns and make change happen, have a look around our campaigns page and get in touch.

How growing up with cerebral palsy helped me achieve my dream of being an author

Throughout her life, people have made Rachel feel like she couldn’t achieve as much, because she has cerebral palsy. Those negative attitudes always spurred her on and today her hard work has paid off. Not only is she realising her dream of publishing a novel, she’s done this alongside her full time job, proving that with hard work, you can achieve anything.

In this blog, she writes about determination, pursuing your goals and seeing disability as a strength. 

Having had cerebral palsy since birth, I realised when I was in primary school that I would always have to work harder than everyone else to achieve my dreams.

I worked so hard to learn to walk, to hold pens, to tie my shoelaces and to fasten buttons. Sometimes, I’d become angry and frustrated at not being able to do things my friends could but then I started to think about alternative ways of doing things, such as getting Velcro put on my shirts and shoes.

I have difficulty holding a pen, so it took me longer to write essays and do homework. Despite that, I loved writing diaries and stories as a way to understand my experiences and I dreamed of being a writer.

Having spent hours of my childhood having physio on my legs and hands to improve my co-ordination, it was ingrained in me that if I put the effort in, I would reach my goals. Which is why, when working full-time as a primary school teaching assistant, I decided to stop writing in my notebooks and actually knuckle down to take writing seriously.

My own experiences shaped my novel

When I started my novel, I wanted to use my writing as a vehicle to say something about my life. I chose to write about a young woman with a facial birthmark and relate some of my experiences and feelings growing up with cerebral palsy through her.

One theme in particular is how suffering cruel comments as a child forms her view of herself as an adult and how she finally accepts herself. The main difference between my central character and me is that Ivy can cover her disfigurement whereas my impairment is on view to everyone I meet.

People sometimes make judgements when they first see me. I’ve also had strangers ask what is wrong with me which I find intrusive. I can almost hear them breathe a sigh of relief when I say ‘cerebral palsy’ as they can compartmentalise me beneath that neat label.

A book on a table next to a mug of coffee

Not giving up

There have been some evenings after challenging days in school when I just felt like sitting in front of the T.V. instead of looking at a computer screen for three hours. But having a long-held dream in my sights of becoming an author, I stuck at it.

Early last year, I submitted my first three chapters and synopsis to half a dozen literary agents. A couple got back to me to say that they liked my writing but my novel didn’t fit their list. Although disappointed, I was heartened by their response to my novel and I wasn’t about to give up on my dream.

The theme of the book is about putting the past behind you to live every day in the best way you can, which resonates deeply with me and I felt it was a message other people should read. So, I was delighted when the Book Guild offered me a publishing deal!

Seeing disability as a strength

From an early age, having cerebral palsy has given me a different perspective on the world to most people, forcing me to question why people act the way they do towards me, aspects which I’ve incorporated into my writing.

Writing is also all about hard work, routine and perseverance. Growing up having to spend hours learning how to walk or how to pick up and use a pen gave me qualities which have enabled me to complete my novel and achieve my dream of becoming a writer.

Somehow, I’ve managed to write a novel while having a full-time job and I think it’s my sheer determination that has got me through it.

Having cerebral palsy has not only made me into the writer I am, as I touch on disability themes in my work, but it’s been a defining factor in achieving my writing dreams. 

Roses of Marrakech by Rachel Clare is out this week. We’ll be giving away two copies over the weekend via Facebook and Twitter, so get involved!

If you have a story you’d like to share, get in touch with the stories team. 

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

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

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

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

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

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

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

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

I feel panicked when assistance doesn’t show up

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

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

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

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

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

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

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

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

Things like this are a real inconvenience to me.

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

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

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

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

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

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

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

Or join the discussion on our online community.

My physical limitations are often the least of my worries – other people’s attitudes are the problem

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.

Many people have responded to this, sharing their own experiences. In this guest blog, Chloe, who has cerebral palsy, talks about her life as a young disabled woman – and why she became a Scope Role Model to change attitudes.

I like to think that my impairment is a small part of me. In theory this is true, in practice it can be a very different story. Having cerebral palsy and a visual impairment does affect my life and always will do, yet the physical limitations are often the least of my worries. It is actually everything outside of what you would think that is the most limiting, with attitudes being at the forefront of it all.

Subtle prejudice is common, and can be just as frustrating

Negative attitudes towards disabled people are not always the more extreme things that may come to mind. It would be a lie to say disabled people are not faced with hate crimes and people being aggressive towards them. However, attitudes can be much subtler than this. From my own experiences it is so common for people to talk to the person I am with, even if it is about me!

The most recent example of this was when my PA was asked if I would like a copy of the menu in Braille, I was stood right next to her. I personally would not benefit from a Braille menu, but it is amazing the one was available. If the woman would have asked myself then the whole situation would have been perfect and incredibly accessible.

On the other hand, if they are talking to me it can come across as patronising or as if they know what is best for me. I fully appreciate that some people don’t know what to say, but why treat us like we are lower than you just because we have a disability?

Chloe standing in front of students, laughing
Chloe is changing attitudes through her work as a Scope Role Model

We’re seen as not capable of certain roles

I believe that current attitudes can also stem into the roles in society which we are able to play. Sure, we can be Paralympians, motivational speakers or disability activists. In fact I am extremely proud to hold of one these roles.

However, attitudes often limit us to these roles and society forgets we are capable of being their retail assistant, accountant or hairdresser. They forget we have dreams and aspirations just like them over the career we want. I understand that some impairments may limit roles we have to a certain extent but that’s for us to figure out – not to be told by members of the public.

Negative attitudes have made me doubt myself

These types of negative attitudes can have a significant impact. Despite attitudes being the opinions of others, it can make you feel incompetent and less worthy of certain opportunities.

On the other hand, at times it can be hard to justify your own achievements beyond ‘they only gave that to me because I’m disabled’. This is reinforced by the attitudes of other people. It is hard to overcome these views when you are faced with it every day and can be extremely damaging.

It can also lead to moments of doubt, even if this is completely out of character. I clearly remember struggling to walk up a school corridor because I had a cast on which was painful. Two girls, who were several years below me, walked past and for some reason I couldn’t help but be so disappointed in myself.

I’d just become Assistant Head Girl and I was so proud of this but couldn’t help thinking “How on earth are you good enough to be Assistant Head Girl, potentially having younger students look up to you, when you can’t even successfully walk down a corridor!”.

I have learnt that this internal monologue is not true at all, and yet I thought this because of the attitudes I am surrounded by. Fighting them away would have been near enough impossible if it wasn’t for my incredible support network.

Chloe smiles at the camera, with seated students behind her
89% of students felt less awkward about disability after attending a Scope Role Models session

I became a Scope Role Model to change attitudes

So, what is the next step? We cannot go on like this and something must change. In my opinion, improving attitudes can come about by challenging stereotypes which often are deep- seated within society.

We need to open our eyes to the reality of having a disability and that we are not as far forward as we believe. This includes the fact we can play a role within society, but also that having a disability can be hard and can be extremely challenging to live with at times.

Scope Role Model programme is working on normalising disability in schools around the country and I love being part of this. I don’t mind being asked questions by the students and I will be honest with them because this is the only way progress is going to be made. Not everyone has to share their story, but I choose to do so.

Why not see a disabled person as an individual who is just as unique as yourself? A person who is just as capable and who has needs that are just as important. Treat us the same as you would a family member, friend, work colleague or professional. With respect, humanity and belief.

Chloe is a student, writer, disability activist and Assistant Coordinator at CP Teens UK. You can read more of Chloe’s work on her award-winning blog.

Scope’s 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?

People think there isn’t much prejudice towards disabled people, but this is my daily reality

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.

In this guest blog, Abbi, who has brittle bones, talks about her life as a young disabled woman – which is far from prejudice free – and why it’s vital that the public recognise this.

It’s May 2018, and my friends and I are on a university reunion weekend in Cambridge, dancing the night away in our favourite shabby student nightclub. As always, my being disabled is a practical consideration of the night – my friends are well-trained in lifting my wheelchair up steps, or dancing in a protective circle if the club is particularly crowded – but beyond that, I’m just part of the group.

Until suddenly, I’m not.

First, I notice a group of boys with a phone camera trained on me, laughing. The boy holding the phone turns the screen to his friend, who laughs too. In the centre of the screen is a video of me, dancing. I shrug it off.

Just as I’m beginning to forget the incident, a man leans down to my shoulder. If I were non-disabled, I might think he was going to offer me a drink, or warn me I’ve got my skirt tucked into my knickers, but as a young disabled woman in 2018, I know exactly what’s coming.

“I just want to say,” he shouts, “I think you’re really inspiring…”

Abbi, a young disabled woman, smiles as she sits in her wheechair

I live my life under the scrutiny of strangers

It’s been four years since Scope’s last report on public perceptions of disability, and I’ve been dancing in that Cambridge club for all of them. Perceptions have changed – but not enough. Disabled people continue to be stereotyped either scroungers, raking in benefits without contributing to society; or inspirations, overcoming all odds to bravely struggle to the shops (and maybe winning a few Paralympic medals along the way).

I’ve lost count of the number of times total strangers have unexpectedly started pushing my wheelchair along streets or across roads, apparently never considering how I would have appeared there in the first place, had I not been able to push myself. I’ve been ‘brave’ in supermarkets and ‘inspiring’ at bus stops; I’ve also been ‘faking it’ in a Blue Badge parking space, and ‘milking it’ at a train station.

I live my life under the near-constant scrutiny of strangers – yet, according to Scope’s recent study, only 22 per cent of non-disabled people still feel there is a lot of prejudice against disabled people, compared with 32 per cent of disabled people.

Until people acknowledge the persistence of prejudice, nothing will change

It’s true that, in theory at least, the UK is becoming more disability-friendly. Accessibility information is often clearly advertised on websites for theatres and events; job applications often reference the employer’s commitment to equality; high-profile court cases such as Doug Paulley’s case against FirstGroup suggest that disabled people can go anywhere, achieve anything.

In practice, even where buses and trains are accessible, wheelchair users continue to be refused access because the designated spaces are filled with luggage or pushchairs. Disabled people have to apply to an average of 60% more jobs than non-disabled people. People with invisible disabilities continue to be berated for using accessible services, or reported to fraud prevention hotlines (despite disability benefit fraud rates standing at under 1% – the lowest of any benefit). Even my own doctors are often surprised that my wheelchair is self-funded, wrongly assuming – like many non-disabled people – that the NHS provides appropriate wheelchairs for free.

It’s easy to see how non-disabled people might believe we live in a largely ‘disability-friendly’ country. The reality is starkly different – as disabled people, and their friends and families, know all too well. And until the non-disabled population recognises the persistence of prejudiced or unequal behaviours, attitudes and systems towards their disabled counterparts, it is impossible for the balance to change.

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?

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?

Why I encourage talking about mental health at work

This year, Mental Health Awareness Week (14-20 May) is focusing on stressNot only can stressful work environments impact on your mental health, if you don’t feel supported, it makes things even harder.

Richard worked for years in a high pressure environment which sometimes made his OCD symptoms worse, but he carried on working, until the attitudes of his managers  made it impossible. Now Richard has set up his own company where he promotes a supportive work environment. In this blog, he shares his story.

I’ve experienced symptoms of Obsessive Compulsive Disorder (OCD) since childhood, and was formally diagnosed at 25 whilst working as a producer at an independent production company in London.

Talking about my OCD never seemed like an option

Looking back, I think the moment to moment existence of being a freelancer, constantly having to think about your professional reputation in an environment with high staff turnover and time pressures, made talking about my OCD never seem like an option, although sometimes it could be hard to hide from colleagues.

I never took a day off sick, and if anything I think my OCD may have increased my work productivity as losing myself in work could be a distraction from my anxiety. But there is no doubt that being in high pressure work environment could make my symptoms more distressing, which impacted on my overall well being and personal happiness.

It was during this time that my symptoms intensified , I was experiencing intrusive thoughts and my obsessive behaviour escalated to point where even simple day to day tasks such as leaving the house were taking up to an hour to complete.

It felt as if I was at a point of crisis. I reached out to some close friends and with their support and encouragement  I eventually gained the confidence to visit my GP.

Throughout this, I was still going to work, I didn’t take a day off, and was doing my job.

Unless the ‘old Rich’ came back, my job would end

I lost insight into my OCD day by day and my anxiety levels continually rose.  I didn’t receive any support from my colleagues until one day when two of my senior managers asked to speak to me.

I was taken into a meeting room and told that they wanted the ‘old Rich’ back. Still terrified to admit I was unwell, I sat through the conversation not able to say a word. The conversation resulted in me being told that unless the ‘old Rich’ came back then my job would end.

There was no sense of compassion or concern, no observation that my behaviour could have been a symptom of my mental health, or that I could of been struggling and unwell. My contract shortly ended and I didn’t work at the company again, not that I wanted to.

Creating a supportive work environment

In 2010, a few years after this experience, I set up my own production company, along with a close friend. The pressure of that can sometimes exacerbate my symptoms but the reward and freedom, and having supportive colleagues that understand the realities of OCD and its impact, has been really valuable.

I think my experience with OCD may have contributed to the kind of work we now specialise in; human interest stories of challenge and triumph.

As an employer, I encourage openness, celebrate diversity and champion difference. I genuinely believe that we are all different, we all have our struggles and creating a supportive work environment not only enriches those we work with but also benefits the work we do.

Mental Health Awareness Week is a great time to talk about mental health and reduce the causes of work-related stress. If you’d like help creating a mentally healthy workplace, have a look at the resources on Mind.

If you’re experiencing problems with your mental health, or worried about someone you know, you’re not alone. There are a range of ways to get help.

“I don’t want pity, I want you to do something about it” – my experience of disability hate crime

We’re pleased to see Changing Faces’ new campaign which aims to raise awareness of disability hate crime. The campaign tells the stories of people who have experienced abuse because of their appearance and gives advice on how to get help. In this blog, Gem shares her own experiences.

I’m really happy to see the new campaign by Changing Faces on disability hate crime. Hate crime happens to disabled people all the time. People think they can get away with it because it’s not taken seriously and even if you know how to report it, it gets tiring when nothing really changes.

I hope this campaign raises some much-needed awareness and gives people the confidence and the resources they need to report a hate crime.

My own experiences of hate crime

Recently, I was at work eating lunch in the cafeteria and I noticed three men looking at me. I’m used to stares so I fobbed it off, but then I noticed one of the men had his phone out and he was clearly taking photos of me and smirking at his friends. I started to feel a bit sick.

They got up to leave and as they were walking by I shouted, “Excuse me”. The guy that was taking pictures ran off but his friends came over and I asked them “Was your friend taking pictures of me?” – they said no but I could tell that he had been.

I was really upset but I acted as if I wasn’t bothered. When I got back to work, I reported it because I would hate for it to happen to anyone else. My employer handled it really well and helped me report it as a hate crime.

They went through CCTV and tried to catch the people but they couldn’t find them. I don’t mind that they weren’t caught, the reaction of my employers was enough for me. I was grateful that they took it so seriously.

Gem smiling, in her wheelchair, with a handbag on th side

Changing Faces reports that on average there are 67,000 disability related hate crimes every year.

It’s likely to be much higher – their survey found that only 30% of  respondents who had experienced hate crime reported it to the police, and many people don’t even realise it’s a hate crime.

Hate crime really affects your life

Incidents like this might not seem like a big thing to some people but it had such an effect on me. I’m trying to get over it but I’m still nervous around people and I’m looking around me more vigilantly. It’s annoying, I’m not usually like that. It’s something I’m warier of now, especially with the rise of social media.

Someone taking photos of you is embarrassing and it’s intimidating. Those photos could have gone anywhere online. It just baffles me that people could do that to someone just because of your appearance.

There’s the classic attitude that ‘little people are funny’ and I don’t understand it. There’s not enough diverse representation in the media. If people only see little people doing comedy, it creates the attitude that it’s okay to laugh at disabled people.

People also shout at me all the time, on the street. They say, “Oi midget”, things like that, especially on nights out when people are drunk.

I’ve also had taxi drivers physically try to yank my wheelchair out of their taxi when I’ve already said to them “Please don’t touch me, please don’t touch my chair”. I’ve got brittle bones so I have to be careful. It had me in tears. He wouldn’t do that to someone not in a wheelchair. I can’t believe that people aren’t aware that things like that are a hate crime.

Gem smiles at the camera in her wheelchair in an office

I don’t want pity, I want you to do something about it

Even if people do know they’ve experienced a hate crime, they haven’t got enough support to report things. And when I reported my incident, I got sent loads of leaflets about hate crime – but it’s a bit late after it’s happened. It’s quite dangerous that it’s still happening and there’s no real acknowledgement in society that it’s wrong or a plan to tackle it.

Changing Faces’ research found that only 18% of people believed that the police would deal with a hate crime effectively if they reported it.

If I tell people about it and I’m upset, they’ll be like “Oh bless”, but I don’t want to be pitied, I want you to do something about it. People aren’t aware of how to deal with these complaints. The people we’re reporting to need educating on what it’s like and how to deal with it.

I’m not asking for special treatment, I just want to be treated like everyone else.

Read stories, support the campaign and share your own experiences on Twitter @FaceEquality.

If you’ve experienced hate crime, you can find out about reporting hate crime on Changing Faces’ website.