“My life is pretty damn awkward” – find out what is making Kelly cringe

Kelly has shared her embarrassing festival tales, is on a mission to make the UK’s most accessible football club and even let us film her when she tied the knot last year!

Now, as part of End the Awkward 2016, Kelly is back to share even more stories that will make you cringe and want to #EndtheAwkward.

Have you got an awkward story to tell? Tell us your story today.

As a generally average British girl, my life is pretty damn awkward anyway so having a disability and using a wheelchair often makes it even more so. The hilarious thing is, it’s often not me that’s feeling awkward.

So many times throughout my life, I’ve been avoided, talked down to and just plain ignored because of my disability. I can make light of it now but it’s actually a really serious and sad issue.

At all kinds of places (bars, hotel, airports, restaurants) people just plain ignore me! It’s the worst! They will do anything from talk to the person with me, blankly stare at me as if I’m speaking a different language and other times just pretend that I’m not there! This is definitely the worst kind of awkward interaction and it can really effect your confidence as a wheelchair user.

It’s hard enough to keep the confident facade going as a young adult as it is, so when throwing a wheelchair into the mix, it gets harder.

Kelly, a young disabled woman in an electric wheelchair, smiles at the camera with her friend

Avoiding the awkward

I’m ashamed to say there have definitely been times where I’ve avoided situations or asked someone else to do something for me to avoid awkward interactions (such as reaching card machines in shops, signing room check-in keys when the counter is literally higher than your head).

I’ve realised, this is simply the worst thing I could do.

I’m the kind of person who likes to challenge myself daily, to the point of painful fear and regret. You’re talking to the girl who auditioned for The Apprentice with no business plan when she was 18! Sometimes I just love being uncomfortable. However, the kind of uncomfortable that avoidance brings is a kind of deja vu uncomfortable that on bad days you just don’t want to deal with.

The good, the bad and the awkward

Sometimes, when I’m out, people will just not talk to me. They will literally avoid talking to me to talk to anyone who is with me, whether it’s my mom, my husband or a friend. They will talk to them rather than me.

There have been times that I’ve been answering back and they’ve been sending their answers back to me via other people, like they are a spirit and I am using the person I am with as a vessel to communicate!

Now I know a lot of my disabled friends have experienced this and I think it’s one of the most common awkward and annoying moments that I experience.

But don’t get me wrong, using a wheelchair definitely also has it’s upsides!

A group of young disabled people in electric wheelchairs pose for the camera at a music festival. They are all wearing rain macs
Kelly and her group of friends at a music festival

As many of you know, I love festivals and I’ve been to most of them. I was recently at a music festival (I won’t say which as I don’t want anyone to get in trouble!) where myself and two others (both wheelchair users) literally just walked into the VIP area.

We weren’t asked if we had tickets or wristbands, we weren’t checked at all. So we spent most of the afternoon enjoying the hospitality that we hadn’t paid for. Thanks to the awkward security guard for not asking any questions!

As some of you may also know, I was an overly rebellious and not always well behaved teenager. At college myself and my friends were caught by the police doing something bad and teenager-like. The police proceeded to arrest all of my friends, except me, and took them to the station. At the time, this really annoyed me! Shouldn’t all police cars be able to transport electric wheelchairs? But now I look back on this and I guess it was a good thing as I got off scot-free!

A group of festival goers (some in electric wheelchairs) pose for the camera
A sunny selfie of Kelly and friends at a music festival

End the Awkward is returning and we want to change even more attitudes around disability.

Got a really awkward story? We’d love to hear about it! Has anyone ever tried to avoid you or acted totally awkwardly around you? Tell us your story today.

Scope Role Models: we want to End the Awkward before it starts

Today (24 August) we’re launching Scope Role Models, our new education programme aimed at secondary school students aged 11 to 16. In hour-long workshops we’ll work with pupils to help them End the Awkward before it begins and to learn about disability in a friendly and engaging way. 

All of the sessions will be led by a disabled role model who’ll share their story and take part in an ‘Ask Me Anything’ question and answer session to help students tackle stereotypes and misconceptions. 

We’re launching Scope Role Models in response to research that shows that one in five young adults have actually avoided a disabled person and 67 per cent of the British public admit that they feel uncomfortable talking to disabled people.

A classroom of schoolchildren
Richard and Rosemary from Scope’s Campaigns team talk to a busy classroom

We also found that over a quarter of people say that getting advice from disabled people would make them feel more confident talking to or interacting with a disabled person. So we’ve decided to give students an opportunity to do just that – by going into schools and introducing them to a disabled role model.

Role models in the classroom

Mary Russell Great Baddow High
One of our disabled role models, Mary Russell, presenting at a session at Great Baddow High School in Chelmsford

We’ve already been into schools across the country, presenting to over 500 students and have received great feedback from students who have participated in the workshops.

At Gresham’s School in Norfolk we delivered two days of workshops to Year 8 pupils. The pupils engaged positively with the sessions and importantly, it aligned with their curriculum. Many pupils told us that it was the first time they’d learnt about disability, stereotypes and the negative attitudes that sadly still exist.

Kim Quick, Special Projects and Outreach Coordinator at the school, told us:

“We make a point of including the topic of ‘role models’ in our PSHE curriculum and, generally speaking, our pupils are pretty astute at recognising, in theory, the qualities of a role model.

Often, they identify these role models in the media or those having celebrity status, so it was our privilege to welcome Rosemary and the Scope team to our school for the day.

Rosemary is, indeed, the embodiment of a Role Model and shared her infectious capacity to educate our pupils with her openness, sense of humour and set of values. Rosemary broke down the barriers with her honesty, likeability, and respect for our pupils’ initial reluctance to ask her questions.

By the end of the sessions, many of them were quite at ease and it was so wonderful seeing them ask questions that they might not otherwise have felt able to ask. While she was talking, I was watching the faces of our pupils; they were engaged, alert, and definitely in a place of learning.

The sessions we had were worth a thousand theoretical situations in the classroom and I am so grateful to her for coming to school and helping our pupils understand how her motivation for social change has far reaching benefits for the next generation’s attitudes.”

Thank You from Gresham's
Thank you messages from Year 8 pupils at Gresham’s

How you can get involved

We’re excited to get out to other schools across England and Wales and to continue sharing our work with students- but we need your help. If you are connected to a school that would be interested in booking a session, please complete our school bookings enquiry form and we’ll be in touch.

So far we have 10 trained Role Models ready and raring to get out there and be part of the sessions but we’re always on the lookout for more!

If you’re a disabled person and feel you would make an amazing role model for students then please complete this short role models enquiry form and we’ll be in touch.

This Dad turned his disabled daughter into a comic book hero

Dan White is the author of the brilliant Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

In this blog Dan tells us how his daughter Emily was disappointed to find that she there weren’t any superheros that looked like her – so he decided to make his own!

“Born to be different. Born to save the world”

My name is Dan and I am an artist with a beautiful, talented daughter called Emily, who I adore. We are both proud to be part of an incredible community of people.

Emily was born with Spina Bifida and Hydrocephalus. This is a condition where the spine does not develop properly, leaving gaps in the spinal cord. When she was younger she was a very impressive bum-shuffler! But around five years ago, we bought Emily her first wheelchair. She loves exploring the world around her, and in her new wheelchair she could introduce herself to all sorts of new exciting things.

Like so many other incredible kids, Emily is blessed with endless amount of curiosity. She is a complete book-worm and absolutely loves learning through books, comics, films and music.

“Something had to change”

Unfortunately, this wonderful curiosity often gave way to frustration, annoyance and bewilderment. Emily always wanted to find characters, icons and images that she could relate to. However, very few made her feel accepted and included. Speaking to other kids, it became clear that they often felt the same.

Soon it became obvious to me that something had to change. I started gnawing on my pencil and, very soon, the ideas started flowing.

Just like Emily I love comics, and I have always enjoyed drawing. Before long I had sharpened my pencil and started developing a new comic that all children would enjoy. I soon realised that it had be about what all children aspire to be: Superheroes!

It is easy to underestimate children. But they are so much more imaginative, accepting and inclusive than adults. This is why I designed my comic for all kids. Because they will be responsible for a future in which people are not discriminated against or side-lined.

Meet the superheroes

With Emily’s help I created a whole world of diverse, unique and accessible heroes. All our heroes are dynamic team-players who use their impairment as their greatest superpower. After a lot of deliberation, we decided to call the comic The Department of Ability.

Several of the characters designed for Department of Ability comic strip
Meet the characters from Department of Ability comic strip

Among the first people to see the images were the charities on Facebook. Strongbones, a  relatively young charity, was the first to respond with real enthusiasm, and gave me the support and backing I needed. They are still very involved with the growth and global adventures of the Department of Ability.

Taking over the world

As soon as we started we had big hopes in the comic/cartoon world. It wasn’t long before our superheroes were taking social media by storm, with just a quick click and a paste on my PC.

Soon after designing the characters I gave up my day-job to become a full-time artist so that the Department of Ability could keep growing. The characters became more and more popular, from Australia, through India, to America. It is clear that Emily’s vision and insight have struck a chord with people all over the world.

It’s a Marvel!

At this point we knew everyone loved the characters, but we still had to design and produce the comic. I knew this would be a 24-hour job, but with the help of a literary agent (a real life wonder woman), it started taking shape.

She even showed the drawings to Stan Lee of Marvel, one of the most influential, brilliant and creative figures in the whole industry. He loved the idea, and now we are looking to work with him. I couldn’t believe it. It is one of my childhood fantasies realized.

The disabled community is a hub of amazing talent, from artists to dancers, to film makers to musicians. It is time they were all able to share and showcase their brilliance.

To infinity and beyond

Right now it couldn’t be a more exciting time for the comic. Strongbones threw an enormous party for us at Hamleys in June and The Guardian broke the news of Stan’s possible involvement. Since then Emily and I have appeared on The Saturday Show, CBBC Newsround, ITV Lunchtime News, and BBC Radio. There has even been some film interest from overseas and discussions with Merlin entertainment. I might even be working with one of the world’s leading comic book writers to finish the first adventure.

I could never have imagined our idea and vision would appeal to so many people. But it seems attitudes and prejudices are finally changing. Inclusion is coming!

Or, in the words of the Department of Ability: Born to be different, born to save the world.

Visit the Department of Ability website to read the comic strips. Alternatively, you can find out more on Facebook and on Twitter.

Want to see more characters disabled children can identify with? We would love to hear your thoughts. Leave a comment below to share your ideas.

My daughter was thrown out of a pub for being disabled

Last weekend, after celebrating Brighton Pride, Jenny’s daughter Charlie was asked to leave a pub because she is disabled. Jenny chose to share their experience in a post on Facebook and the response has been amazing, with messages of support coming from hundreds of people. The post has now been shared over 1000 times, as well as in the media.

In this blog Jenny shares her story, why she felt she needed to write it, and why raising awareness of invisible disabilities is so important to her.

My 19-year-old daughter Charlie has two chromosome abnormalities and is a bit of an enigma. On the one hand, she is very innocent, child-like and can’t read or write but, on the other hand, she has a great vocabulary and wants to be a teenager, just like other young people her age. She will never be able to do things on her own because she is vulnerable and unaware of consequences. Anyone who has met Charlie will know that she is one of the sweetest people you could ever wish to meet.

On Sunday night, Charlie was thrown out of a pub in Brighton – for being disabled. There was only one other customer in the pub as everyone else was sitting outside on the benches. As we were being served, I suddenly noticed that Charlie was crouching quietly on the floor with her hands over her ears. She said it was because a sudden burst of loud music had startled her. The barman said she would have to leave.

I was shocked and explained that she was disabled, that the music had temporarily scared her but that she was okay now. He insisted that she was not welcome no matter how calmly I tried to explain why this was wrong. We had no option but to do as they asked.

Why I chose to share our experience

This was the first time I’d written about something like this. Brighton is quite an inclusive place and Charlie and I are quite well known. We’ve never really had much experience of negativity. When we were told to leave the pub, I tried my best to explain why it wasn’t acceptable in a calm, friendly manner, but they were just completely dismissive. They said “Right you’ve had your say, now you have to leave”. I was frustrated and sad, more than angry, about the injustice of it.

It affected Charlie very badly. She was devastated. She said she wanted to die, she said that she didn’t want to be disabled. She just thought everybody hated her. And I thought people don’t hate her, people really, really like her. So I just wanted to put it out there because it was so unfair and I thought people who knew Charlie would be able to say “Well Charlie’s lovely” because she is.

Headshot of Jenny and her daughter Charlie smiling with the sea in the background
Jenny and Charlie smiling for the camera

The response has been amazing

I just thought it would be shared among my friends so it’s very strange now that it’s been shared 1000 times! Charlie’s had so many amazing comments from lots of people, those who know her and people who are feeling the indignation on her behalf.

Charlie can’t read or write and never will be able to, but I’ve been able to read out the comments that people have left. It was amazing to get those supportive messages. And what has been particularly uplifting but also sad, is to see that so many other people have had similar experiences, all over. Not just in pubs but with the general public.

I want to raise awareness of invisible disabilities

Things like this do seem to happen more with invisible disabilities than physical disabilities. As I said in my Facebook post, at the pub I asked if he’d discriminate against a wheelchair user and he said “Of course not” and I said “Well what’s the difference?”.

Life can be very difficult. For instance, this morning, although Charlie is 19 and a half, I’ve had to shower her, wash her hair, make all her food and drink. I’ve had to rescue the microwave twice. Sometimes it’s exhausting and to have to also cope with unnecessary discrimination as well, it’s so completely unfair. Why shouldn’t a disabled person be able to live their life the way they want, just like any non-disabled person?

If this is a chance to stop this happening again, I’m going to do all I can

Charlie smiling at the cameraQuite a few people have said that this might set a precedent, which would be wonderful. Hopefully invisible disabilities will be recognised and accepted in the same way that visible ones would be. I hope people like Charlie and other disabled people, don’t have to go through this again. It would be wonderful to think they can just live their lives without anyone discriminating against them.

Making people aware is a hugely positive thing. I’m not somebody who would normally go out and ‘sell ourselves’ but if this is a chance to make sure something like this doesn’t happen again, I’m going to do all I can. Because that’s the only way change is going to happen.

You can read Jenny’s full post here. If you have a story you would like to share, get in touch with Scope’s Stories team.

Update

The Mash Tun pub have investigated this incident and the staff member involved has been dismissed from their job. The Mash Tun are now working with the disability organisation Enable Me to improve the way they treat their disabled customers. Jenny has also released a new statement on Facebook about what happened. 

 

Spare Tyre Band: a group of disabled musicians making a big noise, and their own instruments

Two weeks ago Guy Llewellyn shared his experience of starring in the Big Band featured in the 2016 Paralympics Superhumans advert. Here, Amy Smith, from leading  participatory arts charity Spare Tyre, tells us about another musical ensemble: The Spare Tyre Band.

The Spare Tyre Band members do not simply play their instruments. They make them too. 

The Spare Tyre Band: “It’s Like It’s A Part Of Me!”

My name is Amy and I work as the General Manager of Spare Tyre. Spare Tyre is a leading participatory arts charity based in London. For me, meeting the Spare Tyre Band has been one of the top highlights of working here.

The Spare Tyre Band features disabled performers who have learning difficulties. Each band member plays an instrument they’ve created from recycled materials.

“The Band is loud, and proud”

Band member Paul and Spare Tyre Artistic Director
Band member Paul and Spare Tyre Artistic Director Arti Prashar at Lewisham People’s Day

I first met the Spare Tyre Band in Catford. We had arrived for Lewisham People’s Day on a warm Saturday in July and I stopped by the station to pick up Band Member Chirag on my way. Even though we had to travel there independently, we met up so we could find our way to the park together.

The Band is a loud, proud and creative way for people with learning difficulties to make their voices heard. It allows them to showcase their skills to the world, and helps challenge prejudice about disabilities and learning difficulties.

The programme is challenging and encourages performers to stretch themselves. The physical activity of the rehearsals and performances is good exercise in a supportive and fun environment.

“I feel amazing, I feel I’m reaching out. It’s like it’s part of me… Spare Tyre Band gives me a focus and a meaning” – DJ, Spare Tyre Band member

SONY DSC
DJ, Jack and Jocelyn performing at Wandsworth Arts Fringe

Meet the Instruments

We love to be as creative and inventive as possible when we make our instruments.

We are very proud of our tubular bells made of old copper pipes. We have also got four large drums made of old industrial spools. We also have dozens of smaller drums and trumpets made from plastic tanks, sweet tins, bottles and plastic piping.

We love to discover and learn about new instruments from all over the world. For example, one instrument we use is the akadinda – a wooden xylophone originating from East Africa. Usually with a xylophone you strike the tops of the pieces, but with an akadinda you strike the ends to make a more beautiful sound.

Making Music, Making Instruments

At Lewisham People’s Day, the team performed their set of 20 minutes. They played ‘Our Beat Speaks to the Heart’ and everyone’s favourite: ‘Fish and Chips’.

After a little break, they got out a huge picnic mat and everything we’d need for the drop-in Instrument Making Workshop: brightly coloured tape, ribbons, dried beans, plastic piping, bottles, and carefully taped cans and tins.

Anyone can come join in, and make a shaker or a drum out of recycled materials. We all sit down together and build and decorate the instruments. Then we have a jam session, with everyone playing together.

The workshops have a strong ethical and environmental message, as well as a creative one. They are a reminder that anything can be reused and turned into something fun.

Bigger and Better

Since March, the Band has gathered every week to build more instruments, compose new material, and rehearse. The performance schedule is ambitious and professional.

Three band members put their hands and wristbands together
Chirag, Scarlett and Amy put their wristbands together at Lewisham People’s Day

Summer 2016 has been a busy run of outdoor festivals all across London. As well as Lewisham People’s Day we hit Wandsworth Arts Fringe, Redbridge Green Fair, Fairlop Fair, Wandsworth’s ‘Get Active’ Festival, and The Streets in Ilford.

The Band’s sound is loud, rhythmic, and infectious. The beat will always get the audience up on its feet.

Members of the Band often travel together to support each other in the journeys across London. We meet at local stations and catch trains together, or just walk together to find the Festival site.

As everyone knows, London is a huge city. But travelling all over London together makes everyone feel more confident and independent.

“We are always looking for new members to join”

The Spare Tyre Band will be forming again in Spring 2017. We are always growing and looking for new members to join.

For more information about Spare Tyre and the Band visit their website.

Know of any other Bands for people with complex needs? Or ever seen the Spare Tyre Band perform? We would love to know what you thought!

Get in touch with ideas or comments on Twitter or leave a comment below!