Tag Archives: Wheelchair

“I hate it when people fake” – and other things you hear as a part time wheelchair user

Chloe is a student and blogger, creator of Life as a Cerebral Palsy student and an Ambassador for CP Teens. 

She has mild cerebral palsy, seizures and sometimes uses a wheelchair. For End the Awkward, she talks about some of the awkward moments this brings and how a balance of education and humour is the way to improve attitudes.

People often think I’m drunk

I’ve had various nights out where people thought I was completely wasted. I have cerebral palsy but I can walk unaided, with my stick. On a night out I don’t tend to wear my splints. I probably look ‘normal’ when I’m sat down and when I stand up people are shocked. People assume that, because I’m on a night out with friends, I’m drunk, when actually I can’t drink a lot with the medication I’m on anyway. At most, I might be a bit tipsy but bar staff will say “Oh you’ve had one too many”.

I tend to go one of two ways – I either make a joke, like “Oh yeah I guess I am… wonder why I’ve got this stick though” or I just say “Well actually I have cerebral palsy, I’m not drunk”. To which they’re usually like “oops”.

Misconceptions about wheelchair-users

Once, I was out clothes shopping with friends and I was in my wheelchair. My friends went one way to look at something and I was looking at a dress. It was on a higher hanger so I was leaning forward, not even standing up, just reaching and this woman looked at me and said “Ugh I hate it when people fake.” I was thinking “What?!” and obviously my friends weren’t there to back me up. I said “Excuse me?” and she said “Well you know, all these people pretending” and I said “Do you know what a part time wheelchair user is?” and she still didn’t believe me. I was just a bit speechless so I just went in the opposite direction.

Should we carry you down the stairs?

I’ve been at a restaurant where there were stairs to go down and the waiter came over like “We could carry you down the stairs?” so I said “I’ve got my stick, I can get down myself if that’s okay” and he just stared at me. I was like “I can walk. I may be exhausted by the time I get to the table but then I can sit down for the meal and I’ll be fine. And he was like “Oh… okay… so do you want me to carry your chair” and I said, “Well yes, that would be very helpful”. I’m amazed by how many people still think you either use a wheelchair all the time or you don’t, or you can either walk or you can’t.

Photo of Chloe in her wheelchair, wearing her leg splints

Fear of the unknown

Because I also have seizures I get avoided quite a bit – people don’t want you to go unconscious on them! It can happen anywhere, like in the middle of busy city centres! There can be warning signs but it varies. I have three different kinds of epilepsy. It can range from “Sit me down now, I’m about to pass out” to no warning whatsoever and I’ll just fall.

I definitely think it’s more a fear of the unknown that anything else. People aren’t sure what to do if it happens so they don’t want to be in that situation. There are so many different kinds of seizures. People think about the ‘typical seizure’ but a lot of mine aren’t like that. So they don’t really know what’s going on. Their instant reaction is to call an ambulance or stare at me, neither of which is helpful. I rarely need medical intervention.

There’s no need to avoid me though. Once I collapsed on one of my friends and she wasn’t sure what to do but I came round and it was fine. She knew that I had seizures but she’d never actually seen one until then. She just joked “A warning would have been nice!” and now she’s used to it.

Ending the Awkward

I think you have to use it as an opportunity to educate people but maybe with a slightly humorous twist. You don’t want to be too serious because I think they’ll just go “Right I’m avoiding doing that again ever in my life”  but if you laugh it off too much they might not realise that what they’ve done is bad. It’s about getting that balance right.

To hear more from Chloe, visit her blog. 

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

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

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

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

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

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

Inspired by the Paralympics

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

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

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

Will sat on a sofa against a brick wall

The petition

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

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

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

Reasonable adjustments

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

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

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

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

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

What’s next?

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

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

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

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

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

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

I broke my spine, but became a wheelchair racer

Lizzie Williams is a full time student studying Sport, Health and Exercise Science. She has osteogenesis imperfecta (brittle bone disease) and is also a wheelchair racer and a T54 British Athlete.

She talked to us about her long journey to wheelchair racing and the expectations she has exceeded along the way.

The hydropool is sort of where my sporting journey began. Swimming in a pool was the only really physical activity I could do. As you are weightless in water, there’s obviously no pressure on your bones. I started that when I was really little.

I came back home and started training with a local group, got scouted for the ParalympicsGB team and was heading in the right direction for the London games but in 2012 I discovered that I had broken my back. Everything just sort of ground to a halt. I couldn’t do anything physical at all. My fracture wasn’t stable so I didn’t want to risk anything.

In 2013 I had the surgery on my back. After my surgery I was supposed to be in hospital for five days and they said I’d be walking out of there in a couple of weeks. I woke up from my surgery and I could barely move from the waist down. It went a bit tits-up I suppose you could say!

Having to learn everything again

I was in hospital for three and a half months learning to walk again. I couldn’t eat, I couldn’t drink, I couldn’t even go to the toilet. I had to learn all those things again. I had to learn how to sit up in bed, how to transfer to chairs, how to take steps. That moment was the lowest in my life.

I was in my second year in college at the time and it just put a spanner in the works for everything. As I’d spend so much time in a hospital environment, I’d always wanted to work as a nurse because I really appreciated everything that they’d done for me. I wanted to make a difference. It sounds really cliche but I wanted to give back.

After my surgery I realised I couldn’t do that. There was no way. I’d been at college studying things like sciences and health and social care. I wasn’t going to be able to do that anymore.

When I came out of hospital my sister was applying to university and I didn’t know what I was going to do or what options were available to me. At this point, I couldn’t get back into sport because I had to wait 12 months for the metal work in my spine to fuse to my bones. I decided that I was going to start the process again, go to a different college, do a different course and get the grades that I knew I could.

Lizzie Williams, a young disabled woman, races an adapted wheelchair on a race track
Photo courtesy of Peter Milsom

The journey to wheelchair racing

After the metal work fused I started getting back in the gym and doing physical activity again. I was volunteering at an event that had Steve Brown, who is a GB wheelchair rugby player. We were talking to some of the kids and he said he used to train down in Worthing for wheelchair racing and suggested I check it out.

I did the 100m in 25 seconds and the coach who was there was like ‘okay that’s pretty good’. Three weeks later I was entered into the London Westminster Mile and I came second. It’s just gone on from there really.

I don’t just want to be a great athlete, I want to be someone that people can look up to and I want to encourage people to get into sport because it is really great!

I can’t imagine what I would be doing without sport. I just love life. Every opportunity is a good one. It’s another chance to show the world that there may be wheels there but there are some pretty good things alongside them.

Lizzie Williams, a young disabled woman, races in an adapted wheelchair on a race track

We’ve published the findings of a new poll which asked disabled people whether the Paralympics can change attitudes to disability and asked what life is like if you’re disabled in 2016. Read more about these findings.

Visit the ParalympicsGB website for more information.

 

Featured image courtesy of Peter Milsom Photography

Jordanne Whiley: going for double-gold at the Paralympics

Jordanne Whiley is a Paralympian, eight time Grand Slam champion and Britain’s most decorated female tennis player of all time. She was born with osteogenesis, more commonly know as brittle bone disease.

In this blog she talks about her hopes for Rio and why she wants to show young people that no matter what your background, or how you look, you can achieve anything.

My love for tennis started when I was three

I had my first leg break when I was three months-old and I had my last one at 12 years-old. In between that I had about 26 breaks. When I was three, my dad took me out to Israel because he was competing in a tennis tournament. I was in a wheelchair with my legs in plaster at the time. I didn’t think I’d be able to play but my dad’s friend gave me a racket and ball and I just started hitting it. Then it was all over Israeli news! I got a trophy from the tournament too. It all just kicked off after that.

I became professional around the time I was 16. Before that, I was part of the Tennis Foundation performance programme and I’d won national championships but not at a professional level. I was at school and I wasn’t sure if I was going to carry on with tennis or go into further academic studies. Then I qualified for the Beijing Paralympics on my sixteenth birthday, which was a nice surprise! So I went to Beijing and when I came back I quit academic studies and became a professional tennis player.

People care about the Paralympics a lot more now

In Beijing tickets weren’t sold and people were told to come and watch the Paralympics and told when to clap. Four years later, in London, there was an arena with 17,000 people who turned up to watch my bronze medal match. In just four years, that’s pretty incredible! I’m hoping that Rio will do just as well.

The sport has changed massively too. I’d say that wheelchair tennis is up there as one of the most successful Paralympic sports. The top ten men and women in the world are just a ridiculous standard. It’s actually world class tennis not just “disabled people playing tennis”. Some wheelchair tennis players have got fantastic profiles for themselves.  My own profile has shot up since London 2012.

Jordanne on the court, about to hit the ball

I want to be a role model for young people

When I was growing up, I didn’t really have any role models to look up to. I don’t like looking up to celebrities because I don’t know them. If I looked up to anyone, I’d want them to be a real person. I had my dad for a lot of it. He was my coach until I was 12 and both my parents were very supportive of my career. But it was just me and them for a very long time.

I want to be a real role model to people. I don’t own Bentleys and live in an 80 room mansion – I’m just a real person. I’m very successful in what I do but I’ve been through struggles. Paralympians have a good opportunity to become those kinds of role models. And I do look up to other Paralympians myself.

The bigger my profile gets, the more chance that people will listen to me. So when I’m trying to influence young girls to stop worrying about their body and get on with their lives, I’m more likely to have more impact. That’s what really drives me. I’m not interested in becoming famous, I just want to influence young people.

It doesn’t matter who you are, what background you’re from, what shape and size you are, you can still be successful. You don’t have to look a certain way to fit into society.  And if people think badly of you, you don’t need them in your life.  I know the people around me will always support me and accept me for who I am.

The Paralympics can change attitudes towards disability

The Paralympics definitely have the ability to change attitudes towards disability. You do have the group of people who think the Paralympics is just a load of disabled people playing sports, “Aww, let’s give them a chance!” but then there are other people who have seen it who are like “Actually, these people are world class athletes. Their disability doesn’t mean anything.” People making judgements should just watch some of it. They will be amazed at what they see.

It’s difficult because a lot of people don’t know what wheelchair tennis is. It’s really sad because it’s such a brilliant sport.  As well as that, you have fun, the social life is great and you meet so many different people. It really helps you become comfortable with your impairment as you meet loads of different disabled people. It can really help you accept yourself.

My hopes for Rio

Training is going really well. I’m definitely in a good position for Rio. A lot of people, including myself, know that I can go for double gold. I don’t want to let anyone down. I know I’ve got it in me to win two golds which is exciting. I just need to go out and play my best. I’ve trained for this for four years!

Visit the ParalympicsGB website to find out more.

Jordanne was one of our #30toWatch in our 30 Under 30 campaign. Find out more about Jordanne’s life and career

Photo credits: Header image courtesy of RKGsecond image courtesy of The Tennis Foundation.

Meet Britain’s most decorated female tennis player of all time – Jordanne Whiley

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This story is part of 30 Under 30.

 

Jordanne Whiley is a Paralympian, eight time Grand Slam champion and Britain’s most decorated female tennis player of all time. She was born with osteogenesis, more commonly know as brittle bone disease.

With Rio 2016 fast approaching, Jordanne is training hard in the hopes of getting double gold. As part of 30 Under 30, she talks about how she got into tennis, role models and her other passion in life, singing.

When I was three years old, my dad took me out to Israel because he was competing in a tennis tournament. I was just going out with my mum and he was playing a match one day and I just wanted to play tennis but obviously I couldn’t. My dad’s friend gave me a racket and ball and I just started hitting it. Then it was all over Israeli news and newspapers. Basically, it all just kicked off  because I was three, in a wheelchair with my legs in plaster playing tennis.

I became professional around the time I was 16. I’d just qualified for Beijing Paralympics and I wasn’t expected to but I got the wild card. I actually qualified on my sixteenth birthday so that was a nice surprise! When I came back I quit academic studies and became a professional tennis player.

Tennis is such a great game. You have fun and the social life is great. It really helps you become comfortable with your impairment as you meet loads of different disabled people. It can really help you accept yourself.

Role Models

When I was growing up, I didn’t really have any role models to look up to. I don’t really like looking up to celebrities and people like that because I don’t know them. They could turn out to be something they’re not.

If I looked up to anyone, I’d want them to be a real person, not a celebrity. For example, I had my dad for a lot of it, he was my coach until I was 12 and both of my parents were very supportive of my career. It was kind of like just me and them for a very long time.

Some people say I’m contradicting myself because they think I’m a celebrity role model. But I don’t see myself as that. I don’t own 300 Bentleys and live in an 80 room mansion, I’m a real person. What I say and what I do is always from a real person’s point of view. I’m not interested in becoming famous, I just want to influence, help and inspire people.

Jordanne, a young disabled woman, looks determined whilst holding a tennis racket
Photo courtesy of RGK

Being comfortable in your own skin

I’m disabled and don’t look like Paris Hilton but I’m successful. It doesn’t matter who you are, what background you’re from, what shape and size you are, you can still be successful. You don’t have to look a certain way to fit into society.

Don’t dwell on things you can’t change and focus on the things you can change, like your success in your field or your attitude towards other people or yourself. I would like to help people see that.

If you listen to my story, I was bullied in school quite badly, I never grew to five foot and I don’t have nice legs. But I don’t worry about any of that because I can’t change that. When you do put that to one side and just focus on the things that matter, it’s so much better. Just focus on doing something you love. You might want to dance but you don’t think you’ve got the body to dance. If that’s what makes you happy, just go and dance. Who cares what people think?

Life outside of tennis

Monday to Friday, I train from about 10am-4pm. I get home late evening and then I’m pretty knackered to be honest! I do cook and bake a lot and if I have the time, I do grow my own vegetables. I just like doing normal, domestic stuff.

I’ve sung my whole life. There’s videos of me as a kid singing Spice Girls when I was five or six. When I was in my teens, I was obsessed with Shakira so I only used to sing her songs. As I grew up and my voice developed, it developed like Shakira’s voice! I’d really like to get into singing a bit more as I love it.

I wrote my own song about my boyfriend. For Christmas he bought me a package to go and record it professionally and put it on iTunes. It turned out a lot better than I thought it would. The song is actually really good. It’s kind of similar to Lukas Graham’s “Seven Years”. It’s not mushy, it’s about a real life relationship.

Keep a look out for Jordanne’s track on iTunes.

Jordanne is sharing her story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Read other stories from 30 Under 30.

To find out more about stories and how they are at the heart of everything we do at Scope, visit our new Stories hub.

Featured image courtesy of The Tennis Foundation.

The football player who is representing England in the World Cup – Chris

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This story is part of 30 Under 30.

 

Chris has spinal muscular atrophy and from a young age has been playing powerchair football. With the sport constantly changing, Chris is gearing up to represent England in the Powerchair Football World Cup next year.

As part of 30 Under 30, he tells us how the sport has changed and why people should get involved.

I’ve always been football mad.

At school I was playing on my knees in goal, driving around on the floor until my muscles deteriorated. Then I got involved in wheelchair football. I was at secondary school and my P.E. teacher heard about trials that were going on at Aston Villa at the time. I’d never heard of the sport, never seen the sport played. So I got the afternoon off school, went down and had a look. I used to play by perching on the end of my seat and kicking a ball around in the garden with my brother so it was a bit of a shock when I arrived.

Back then it was a great big football and half a car tyre strapped onto the front of the wheelchairs. I actually burst out in tears. I was like “This isn’t football. I don’t want to play this.” It was more like bumper cars than football. But my dad was there and he encouraged me to give it a go. I fell in love with it and I’ve not stopped playing since.

Chris, a young disabled man in an electric wheelchair, smiles at the camera

The sport has massively changed since I started playing

There’s a national programme, there’s two national leagues with 12 teams in each and there’s regional leagues. Back when I started there was no real backing, we played in everyday wheelchairs so it was just whatever you could ‘bodge job’ up to play. It wasn’t very professional. But now we’ve got specific chairs for the sport, specific equipment and a national league structure behind it.

Rather than the car tyre on the front of the chair, we’ve got a clip on attachment that’s a solid metal structure that you use to knock the ball around. The ball itself has gone down to half the size.

It’s given the sport a whole new lease of life. It’s quicker, it’s more enjoyable to watch. The ball gets kicked around with a lot more power so a lot of people that are watching are pretty gobsmacked when we’re smashing the ball around the court.

The game has been taken to a different level.

Representing England

My first involvement with the England team was in 2011. It’s all performance based. The coaching staff are all involved in the league so they’re just scouting the team, scouting the players. Then you get invited across for trials. And you’re just hoping to keep receiving an email saying “we’re inviting you back for the next one” and I’ve been in the squad ever since.

There’s been three World Cups now and 10 competing teams in each so far, from other counties world-wide. There’s been a qualification process to getting in the World Cup whereas before it was if you wanted to and if you’ve got the finances to do it. So now, fingers crossed, next year will be the most competitive World Cup to date. We had to qualify through a European qualifier.

It’s not a Paralympic sport yet but in 10 years’ time, I hope it will be. That will give it the bit of extra profile it needs and the professionalism it needs. It will allow people to view it as an elite sport rather than just an opportunity. Lots of people around it just see it as “oh great my son or daughter gets to play”, instead of “my son or daughter could be a gold medallist”. Fingers crossed that happens.

Two disabled men in electric wheelchairs play a wheelchair football match

I would recommend it to anyone

At matches people can expect a lot of excitement. You get plenty of action. It’s kind of one of those sports that you have to see it to understand what it’s all about.

Fingers crossed, as it grows and we can open it up more to the general public, people will take a genuine interest and, fingers crossed, watch England win a World Cup.

I’ve always been quite a competitive person, so it gives me that opportunity to compete on a level playing field. Having the opportunity to grow as an athlete, being able to play in the World Cup and travel the world playing football, it’s been great. I would recommend it to anyone.

Chris is sharing his story as part of our 30 Under 30 campaign. We’ll be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To find out more about powerchair football, visit the Wheelchair Football Association’s website.

“YouTube is really great for talking about disability” Landie, vlogger and entrepreneur

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This story is part of 30 Under 30.

 

Joe Land AKA Landie is a 19 year-old video blogger (vlogger) who also owns a business called Social Land. Joe has hypotonia which affects his muscles.

As part of our 30 Under 30 campaign, Joe talks about his passion for making and editing YouTube videos, starting a business, attitudes online and gives some tips for anyone who wants to start vlogging.

My interests and hobbies involve spending a lot of time making and editing YouTube videos. I especially enjoy the editing side of it. When you edit a video and it looks good and you’re proud of it, it’s a nice feeling.

Attitudes to disability on YouTube

When I first started making YouTube videos, people didn’t know I was a wheelchair-user at that point. The reason I didn’t say anything was because it didn’t really matter. But then, when I started to vlog, you could quite blatantly see that I use a wheelchair.

My followers’ attitudes didn’t really change. If they do bring it up, that’s fine, they’re just curious. If someone asks what’s wrong with me or asks questions – I see that as a good thing. The worst thing is when I’m out or something and there are just some people you can just tell are a little bit awkward. They obviously want to ask a question but they don’t. I just hate that. That’s the one thing that really annoys me because I don’t want people to feel awkward.

Landie, a young disabled man in a wheelchair, sits in front of two computer screens and is editing a movie in advanced software

The reactions to the videos I’ve made about disability have actually been the best I’ve got. The videos have around 200 views but 40 comments which is a lot in comparison. People respond to it really well and it makes people ask questions.

I think the videos are quite good at making people be honest with you and interact with you because I’m making the video about it and I’m clearly not trying to hide anything. People quite like personal videos and that’s about as personal as it gets isn’t it really?

My tips for vlogging

The advice I would give to someone who is thinking about vlogging is don’t make it false. There’s nothing worse than when you watch peoples’ videos and you can quite clearly tell that that’s not who they actually are and that they’re trying to copy someone. Getting inspiration from someone is good but when people try to flat out copy, it’s just really cringey.

I use a Canon DSLR which is perfect for filming vlogs where I’m sitting still. But to be honest, you can definitely just vlog using your smartphone. If you are out and about, vlogging on your phone camera is ideal, especially with something like an iPhone 6 onwards.

People really worry about being awkward in front of a camera but, as long as you just act normal, it’s not going to seem awkward for the people watching it. If you worry too much about how you’re coming across, you can give the wrong impression. Don’t do it if you just want to get the subscribers because it doesn’t work like that. You’ve got to enjoy it to get the subscribers!

Landie, a young disabled man in a wheelchair, films himself using a digital camera

Joe is sharing his story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Catch up on all the stories so far on our 30 under 30 page.

To see and hear more from Joe visit his YouTube channel.

‘You can walk, it’s a miracle!’ Umm, no I can’t. #EndtheAwkward

Lucy is an award-winning charity campaigner, blogger, and dog trainer. For our End the Awkward campaign, she describes the day she was told she could walk again… by a physiotherapist who failed to spot her wheelchair in the corner of a room.

I have Ehlers-Danlos syndrome. Instead of my collagen being like glue it’s like over-chewed chewing gum, or at worst wet tissue paper. It stretches, gets thinner and sometimes tears, but never resumes its normal shape.

As a result, my gut has failed, my bladder has failed and I can’t eat or drink anything at all. I’m attached to a pump 24 hours a day which pumps all my nutrition, fluid and medicines straight into a line in my heart.

In most cases, people with Ehlers-Danlos can lead fairly normal lives. I have a really severe form which has led to organ failure and life-limiting complications. Nobody knows why. It’s just how it is.

My life philosophy

I had health problems growing up but I became disabled and very poorly when I was 14. In months, I went from being healthy to completely wheelchair bound, and then a year later bed bound.

Lucy and her mum smiling at the camera. Lucy is holding a certificate stating she is now an ambassador for a children's palliative care network.
Lucy and her mum. Lucy is a youth ambassador for the International Children’s Palliative Care Network

I’m 21 now and my health is up and down. Sometimes I can get out and about, at other times I’m stuck in bed for up to a year at a time.

My philosophy is simple. You have to make the most of what you’ve got and not dwell on the things you haven’t, especially when your time is limited like mine is. To get by you also have to laugh, and find humour in even the most difficult situations.

Seriously, I can walk now?

Last year, I was in hospital recovering from a major hip operation. A physiotherapist breezed over and told me I’ll be walking again in no time. Hallelujah – a miracle!

I explained, patiently, that I haven’t walked for six years but she wasn’t listening. Apparently, I was going to make a full recovery. Five minutes went by before the penny dropped and she spotted my wheelchair. I watched her face turn as red as a beetroot. She must have felt seriously awkward, because that was the last time I saw her.

Molly, my assistance dog

Lucy coddles her dog Molly
Lucy and her ‘rock’, assistance dog, Molly

Molly is my assistance dog in training. She picks up things I have dropped, puts clothes in the washing machine, takes my jacket, trousers, shoes and socks off, gets my mobile, fetches my medicine pouch and lets people know if I need help or alerts them if I’m poorly.

When I’m out with Molly, people will say to me: ‘Is she pulling you along then?’ or ‘You don’t need to worry if you break down do you?’ I try to smile, but when it’s most people I encounter saying it, it gets old.

Joy rides

I use an electric wheelchair. For some reason, people love to lean on, or next to, my joystick, so I am always sure to switch my chair off unless they fancy going for an unexpected ride!

Molly has driven me a few times as she likes to lay her head next to the joystick. I have to be careful when people hug me too. When I do leave my wheelchair switched on, the look of horror on people’s faces is priceless – you’d think they had committed a crime.

Why is disability so awkward?

When you’re in a wheelchair, most people don’t talk to you or even look at you – except the ones who stare. But when I got Molly, people started talking to me. She became the perfect icebreaker! Now, rather than being “that girl in the wheelchair” I’m the girl with the amazing dog.

Lucy in her wheelchair outside, walking her assistance dog Molly
Lucy and Molly on a training walk.

Awkwardness comes from unfamiliarity. People are too scared to talk to me for fear of saying the wrong thing. So some cover their nerves with silly jokes and others just totally ignore me. When people are scared of saying the wrong thing to disabled people, they end up excluding us.

How to end the awkward

I wish people would treat disabled people like they would anyone else they meet. Our bodies may mobilise and/or communicate in a different way, but we’re still human beings with wants, needs, hopes, dreams, desires, hobbies, passions, outlooks and attitudes.

We’re as unique as the rest of you, and we all want to live the best life we can. I wish people knew how to talk to us, which of course, they literally do, but when they see a disabled person everything goes out the window.

I can guarantee that you can make a disabled person feel 100 per cent better if you walked up and talked to them about ‘normal’ things, rather than entering straight into deep, intrusive and personal questions.

I’m quite open. I don’t mind telling people about my disabilities. But it would be nice if one person just started a conversation with me for the sake of it. I’d love that.

Through her blog, and social media, Lucy shares her life with Ehlers-Danlos Syndrome and describes how her charity work is helping to change perceptions of disabled people.

Lucy is raising money for a custom-made electric wheelchair to help her regain some independence.

Have you got an awkward tale to tell? Share your story with us.

 

Disabled people aren’t delicate! Why we’re getting fit this #Steptember

Guest post from Kris Saunders-Stowe of Wheely Good Fitness, who runs exercise classes for both disabled and non-disabled people in Herefordshire. He’s helping us promote Steptember, the fun fitness challenge where you can raise money for Scope.DSC_0153

For some people exercise is a dirty word, conjuring up images of sweaty, unfriendly gyms, intimidating perfect physiques and lots of hard work, sweat and tears. This can be true! However, it’s just one side of the fitness world, and not at all reflective of what it’s all about.

Every movement we perform in daily life, from carrying shopping and lifting a wheelchair into the car to opening a door or cleaning our teeth, is exercise.

And the definition of success is different for every person – one person’s desire to lift a 40kg dumb-bell is just as valid as another person’s desire to lift and hold their cup of morning coffee.

Step away from the stereotyped image of exercise, and you see that it’s about looking after your body to ensure that it is healthy and able to support you in your daily life.

Disability and fitness

Disability and exercise aren’t usually seen as going hand in hand. Yet for disabled people, getting the right exercise is all-important – otherwise, you’ll lose strength and flexibility and become less and less active.Wheelchair fitness class taking place

Another reason for the negativity around exercise and disability is one forced upon us by society. Disabled people are delicate, we should be careful, we’re not allowed to do this and that. Health and safety!

We only have to look at Paralympics to see that that’s not true. But lots of disabled people can relate to being turned away from a gym. Or they’re only allowed to take part in an over-70s class or similar (which is silly in itself – older people resent being pigeon-holed by their years rather than their abilities!).

At Wheely Good Fitness, we like to challenge these preconceptions by running modern, proactive and high energy classes for people of varying abilities.

We do this because there’s a severe lack of suitable multi-ability classes out there – classes where disabled people actively take part with the group and have the same experience as the rest. There is a huge need for leisure facilities to start making disability fitness an integral part of their programmes.

Get involved

Whether you’re disabled or not, we’re all the same – our muscles need maintaining, our hearts need looking after, our minds need challenging and our weight managing. I want to encourage more people to take part in exercise on any level, and that’s why I and some of my clients are supporting Steptember.

Man lifting weights while sitting in a wheelchair, another man with a prosthetic leg behind him
Kris with disabled model Jack Eyres, who’s also supporting Steptember

This month of activity is about increasing the amount of physical activity you do, in whatever way you prefer, whilst also raising money for Scope. You might want to take 10,000 steps a day, or the equivalent using a wheelchair, but there are dozens of other activities that also count.

We’re also releasing our first ever Wheel-Fit home exercise DVD for Steptember, with £1 from every copy sold going to Scope.

Remember, we all have something we can do to get fit – and we can all improve our abilities, mood, energy levels and fitness through exercise. Whether you’re lifting dumbbells or tins of beans, doing a marathon or wheeling to your front door and back, it all makes a difference!

Sign up for Steptember to get fit this autumn – and raise money for Scope! You can do it alone or with friends or colleagues.

Don’t worry, the treadmill isn’t for me – #EndTheAwkward

Guest post by Emily Yates, a travel writer, disability awareness trainer and consultant – she’s currently working on accessibility in Rio de Janeiro ahead of the 2016 Olympics. Emily is sharing some of her awkward moments as part of our End the Awkward campaign.

My boyfriend is really into his mountaineering and is currently training for an ultra-marathon. He recently ordered a treadmill to help him on his way, and arranged for it to be delivered to the house during the day. Portrait of Emily, a young woman with pink hairHe was at work when the delivery man turned up and rang the bell, but I was home and opened the door to let the guy in.

When he saw me sat there in my wheelchair smiling at him, he almost dropped the treadmill and ran for the hills! He was so visibly shocked and worried he’d got the wrong house number – how could I, a girl with cerebral palsy, use this running machine?!

After apologising and assuring him this was the right house and my boyfriend had actually placed the order, we were able to giggle about it. And of course, I texted Rob straight after to tell him of my awkward, but hilarious, ten minutes

A magnet for awkwardness

For some reason, my disability and the fact I always have bright clothes and hair seem to reduce the need for people to give me personal space. Maybe I’m just a magnet for awkwardness!

Emily sitting in her wheelchair, a beach behind her
Emily on a trip to Australia

Guys seem to think it’s totally acceptable to come up to me in a bar and ask whether or not I can have sex. My response? Yeah, I can mate, but I won’t be having it with you!

I’ve been on planes where I’ve had to crawl down the length of the aisle to get to the toilet after being told that the plane’s in-flight wheelchair has been ‘forgotten’.Emily sitting in her wheelchair, smiling at the camera

I’ve let go of my wheelchair whilst transferring into my car, and watched it roll across the car park at ridiculous speed before smashing into someone else’s vehicle (oops!).

And the other day, I was in Starbucks and struggling to open a ketchup sachet for my sausage sandwich. After not succeeding with my hands, I put the sachet between my teeth and pulled. No luck. I must’ve been quite obviously struggling as a man came over to me, took it out of my mouth, battled with it himself then handed it to me, a victorious look on his face (and probably a reasonable amount of my spit on his fingers).

In one respect, this guy made my day with his problem solving, but really… Who does that?

So, tips to help us all be less awkward: If you want to get your leg over, try and build up the atmosphere just a little bit first. Don’t be surprised when the product you’re delivering to a house isn’t fit for a wheelchair user. And absolutely allow everyone to keep their ketchup to themselves.

We’ve partnered with Channel 4 to produce six short films on awkwardness and disability.