All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

I’m not a hipster, I’m epileptic! – End the Awkward

Bekki is 21 and an intern in Scope’s Campaigns team. She studied History at Oxford University, exploring disability and discrimination.

For End the Awkward, Bekki shares her own experiences of awkwardness and explains why there’s no need to hide from disability.

Awkwardness is a natural part of human interaction. However, when it comes to disability, awkward encounters often take on a slightly more negative tone.

Some conditions fall into a grey area between visible and invisible. Like mine, I have photosensitive epilepsy which you might not know just by looking at me. But I do have to use aids, such as specialised sunglasses, in order to go about my everyday life.

On top of this, there’s the stereotypical view that an epileptic seizure is always a convulsive seizure. In fact, there are over 40 different types of seizure which all look very different. This can be alarming and confusing if you aren’t familiar with them.

People often overreact when I have seizures

I have three different types of seizures; convulsive, prolonged partial and partial. Partial seizures happen most often and these are the ones I often encounter problems with.. They occur between ten and twenty times a day and can range from blank staring, to violent head shaking, or my eyes rolling back into my head.

During my more ‘alarming’ seizures, I’ve had people yell “WTF, are you the possessed or something?!” followed by that person rapidly removing themselves from my presence to avoiding assisting me because “I must have done something to deserve it”. I’ve even had religious officials telling me they’ll pray for me or making the sign of the cross at me, so I don’t go to hell.

Rebekka smiles at the camera

I’m not hungover, I’m epileptic!

The more typical responses I get are based on assumptions about why I’m wearing my sunglasses or using a Mac computer. They’re not what traditionally spring to mind when someone thinks of accessibility aids.

Because I wear my sunglasses on overcast days, during the winter months or inside, and can only use Mac computers (due to different pixel technology), I can no longer count the number of times I’ve had to say “I’m not a hipster or hungover, I’m epileptic”.

I’ve even had to avoid wearing hats because of the comments I get and the ease at which people can remove them from my head.

Avoidance really isn’t the answer

There is a reason why priority seating signs on transport and in bathrooms have been changing their disability signs. In the twenty first century we have begun to recognise that there are a range of different access needs and we shouldn’t make assumptions based on traditional representations of disability.

Some people may have never seen a seizure before, but street harassment and avoidance isn’t the answer. This only isolates disabled people further and makes everyone feel awkward about something that can’t be changed. It may look weird to you, but it’s part of my everyday life. And that’s okay. I came to terms with it a long time ago and often laugh about it with family and friends.

Engage with the awkwardness – it’s a fact of life, not a fact of disability. Maybe next time, talk to me instead of comparing me to a demonic entity?

 You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

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. 

 

Attitudes held me back but with the right support I finally found a job

Lauren is 23 and recently began her first job as an administrator for a social enterprise. At the age of 13 Lauren lost the vast majority of her sight to a rare genetic disorder and is now registered blind. In this guest post she talks about the long and difficult journey to find a job, the difficulties disabled people can face and how she found success at last.

Looking for work

I graduated last year with a 2.1 degree in theology and began a long and difficult job hunt. I was under the illusion that with a good degree, a strong CV due to all of the volunteering that I’d done, and a lot of determination, I would find a job with minimal difficulties. This couldn’t have been further from the truth.

I applied for over 250 jobs in a variety of roles but I had no response from about half of them. I had some interviews but I didn’t get any further despite them giving me positive feedback and saying that they hoped I found a job soon.

Disclosing my visual impairment

I made the decision to disclose the fact that I was visually impaired on almost all of my applications and on my CV. My impairment nothing to be ashamed of so I wanted to be honest and open from the start.

I’m almost certain that some of the reason for not hearing from a lot of the jobs that I applied for was due to the fact that they underestimated what I could do because they knew that I was blind. In interviews I often spent most of my time explaining that, although I was blind, I could do the job just as well as anyone else who had applied.

Finally finding a job

I applied for my current job through the CharityJob website. After uploading my CV and a cover letter, I heard back from them the next day. Their email was extremely positive, asking how they could help make the interview best for me, if my guide dog would need any water and what they were to be like around her.

I went to the interview on a Monday and was told that I would hear back from the company on the Friday, but I heard back from them the same afternoon! They invited me for a taster session the following Thursday so I could see how they worked and for them to see how I worked.

The taster session was extremely positive, the team were lovely and I immediately felt like I fitted in. I heard from the team the same day offering me a job and I was delighted to accept!

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

 The right support is essential

Access to Work have helped with my transportation and getting me the equipment I need to do my job. On my first day I had an assessment to understand what I needed and then we were given the go ahead to order the equipment.

For example, Jaws for Windows which is a screen reader, a braille labelling system and a splitter box which means I can simultaneously listen to my screen reader and the telephone. Having this equipment will ensure that I can do my job as well as my sighted colleagues and that my visual impairment doesn’t mean I’m at a disadvantage.

It’s a really good scheme but the process is slow and has too many stages to it. It would be far better if it didn’t take so long to sort out because for the first month at work I was unable to do my job and had to sit with other people to listen to what they were doing and this was at times frustrating. I just wanted to be able to get on with my job.

I also have very supportive friends and family who were there for me through the no’s and celebrated with me when I eventually got the yes that I had been so desperately waiting to hear.

My employer has been incredible

It’s a varied job and I’m really enjoying what I am doing. They have never had a disabled employee before but they supported me from the beginning and asked me what I needed. They were very supportive and fully participated throughout all of the Access to Work stages.

Now I have everything that I need, I am settling in with my team and getting to grips with the work that I need to do.

Feeling disabled by society

I feel that society’s view of my disability disables me far more than my actual disability, which I find incredibly difficult.

The unfortunate statistic is that two thirds of people with a visual impairment are unemployed and I was determined not to be. I was unemployed for 8 months and I remember feeling at times that I was never going to get a job and feeling pretty useless. I’m very glad to have a job and I’m keen to use my experiences to help others.

How attitudes can improve

I feel that people in many cases don’t look beyond a person’s disability and look at their limitations rather than the unique advantages that employing someone with a disability brings. People with disabilities in many cases are resourceful, determined, outgoing and want to work.

It’s time that there was more awareness about people with disabilities in the work place. We shouldn’t be overlooked just because we’re disabled.

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

 

Recruiting personal assistants means I can live my life how I want to – Nadia

Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.

She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.

I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.

With support from my team, I can enjoy a busy life

I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.

I like to recruit personal assistants myself

I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.

I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.

I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.

Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.

Nadia on a night out with a group of female friends all smiling

I’ve had moments I will always remember

In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.

Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.

I was so proud to win an award

This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.

If you have a story you would like to share, get in touch with Scope’s Stories team.

 

I’ve had many run ins with trolls and bullies – Harvey Price has scored a victory for now

Vicky Kuhn is a disability rights campaigner, journalist and blogger. In this guest blog she talks about Harvey Price’s recent TV appearance as a victory against cyber-bullies, her own experiences and why she’s supporting the campaign to tackle it.

This week Harvey, son of former glamour model Katie Price, spoke out on live television about the bullying he has endured online. Harvey is blind, autistic and has condition called Prader Willi Syndrome.

In his latest television appearance, it was easy to see just how vulnerable Harvey is. His Mum Katie insisted that he appear live, rather than in a pre-recorded segment, so that viewers could see just how hurt he has been by the attacks. When asked what he would say to someone being horrible to him, he blurted out “Hello you c**t”!

Despite the propriety of live television, support for Harvey has been immense, and he has received hundreds of tweets in support of what he said. This is a victory against Harvey’s bullies for now, but the internet is crawling with cyber-bullies and trolls who prey on anyone they see as an easy target. It is now expected that if you have any kind of online presence, you will have to deal with abuse from these sorts of people. I myself have had many run ins with trolls and bullies.

Wheeling the catwalk for ‘Catwalk of Diversity’

In April of 2015 I had the privilege of wheeling the catwalk with some amazing girls. Headed by Katie Piper, the ‘Catwalk of Diversity’ saw myself and my now very dear friends, strutting our stuff on the catwalk wearing some stunning fashion.

Vicky smiling and striking a pose in her wheelchair at the Catwalk of Diversity fashion show
Vicky striking a pose at Catwalk of Diversity

The twist on this particular event, hosted at the Ideal Home Show in front of huge crowds, was that each of us had something that makes us special and different. Two of the team, Tulsi and Raiche, are burns survivors and have visible scars. Brenda has alopecia and Lynn is missing an arm. Olivia has a large scar on her chest from multiple heart surgeries, and Jess and Kerri have visible differences too. I was the only wheelchair warrior that day.

The experience was magical and liberating, and being the social media butterfly that I am, I posted constant photos and updates during our run on the catwalk. All of the feedback I got in person was super positive, and at each show the audience was packed. People clapped and cheered and we felt amazing.

Then the trolling started

Never having any idea that the event would have so much coverage, I personally was stunned when I went in for make-up on day two and saw newspapers with our pictures and online glossy mags like Cosmo featuring us too. It was pretty overwhelming but nice that what we were doing was being well received.

This, for me anyway, was when the trolling started. There was a segment of the show where we wore t-shirts saying ‘what do you see’? The idea was to challenge people’s perceptions and get them thinking about how the world perceives disabled people and people with visible differences.

Vicky, a young woman, sits in an electric wheelchair wearing a Tshirt that says "what do you see?"
Vicky wearing the T-shirt that sparked her troll experience

I posted a picture of myself across my various social media platforms, and as you can imagine it was perfect troll bait. Answers to the question on my t-shirt ranged from ‘a fat b****’ to ‘an ugly cripple’ and everything in between.

I did get similar comments on other photos from the show, but I just shrugged them off. I am extremely proud of what we achieved in that show, and of the photos that I posted online.

I won’t let it hold me back

I still post lots of photos on my various social media platforms, and of course I get mean comments. A plus size girl in a wheelchair is always going to make an easy target for people who get a kick out of trying to tear others down. It’s no different to the playground.

People try to build themselves up by knocking others down. But I can take it. I’m an adult with healthy self esteem and a good sense of who I am. I put myself out there online on a daily basis, and anyone who doesn’t like it or doesn’t like me will be ignored.

We need to tackle cyber-bullying and trolling

When I remember how I felt at 13 when I was bullied in school for being different, I know how Harvey must feel. My bullies said things to my face and that was bad enough. Cyber-bullies are faceless and don’t have to account for their actions. They hide behind a screen and a username and the bullying is merciless.

For kids like Harvey, and others his age, it doesn’t stop when they leave school. I hope Katie’s campaign to tackle cyber-bullying gets a huge amount of support so we can stop vulnerable people from being targeted.

If you’ve been affected by cyber-bullying and trolling and want to share your story, you can get in touch with the stories team.

If you’d like to read more from Vicky, visit her blog Around and Upside Down.

 

Learning to run again as an amputee – Chris’ story

In 2008, keen runner Chris and his wife Denise both lost their left legs in a motorbike accident. Together they recovered and Chris was determined to keep running. He’s since taken part in long-distance runs and triathlons, and in January 2016 he climbed Kilimanjaro to celebrate his 60th birthday. Chris is running the Royal Parks Half Marathon for Scope in October. In this blog he talks about learning to run again and why you shouldn’t let anything hold you back.

Getting back into running

There aren’t many amputee runners so a lot of it you just have to figure out for yourself. One of the first books I read after the amputation was Chris Moon’s autobiography. I got somebody to bring it to the hospital. I knew I needed it for inspiration, to get me excited about the possibility of running again!

We met with three prosthetic companies. When I asked about running, one of the prosthetists said he’d never had anyone wanting to run before but agreed it would be possible and his company would find a way. He actually got Oscar Pistorius’ prosthetist to come over and get me fitted up with a running leg that had an articulated knee. He got me running very quickly but it took a year until I could run 5km continuously with it.

The right prosthetic makes all the difference

After a while he suggested I try a pylon leg, which is one without an articulated knee. I really wasn’t keen because the movement is different. With an articulated knee the leg comes straight through, but you have to swing a pylon leg out to the side for ground clearance which looks awkward. But he said “Believe me Chris think it would make a big difference”. So we went to the running track, fitted the leg and I broke my 400m record within about 10 minutes!

We were told this statistic: if you’re a below the knee amputee you use about 15-25% more effort. If you’re above the knee, which I am, it’s 60%. It’s a lot of work! But with the pylon leg I can bounce along quite comfortably. Now when I’m running I’m not thinking about the leg. It’s just heart, lungs and the clock – just like it used to be.

Chris running the half marathon in Qatar
Chris running the half marathon in Qatar

How training has changed

Where we live is a fantastic place to run. There’s a National Trust property 500 metres up the road. You can run for miles on beautiful trails.

I’m slower now so the training takes longer; I have to plan it a bit more. I used to be able to run around six minutes a mile, now anything under 10 is good! Training for a half marathon now is a bit like training for a full marathon before the accident. I have done a full marathon with my pylon leg but it was a massive undertaking.

You have to take care of the stump, making sure you have Vaseline in all the right places! If you do get a rub it can stop you from training for about a week. You’ve also got to find a way to control sweating because the liner will start to slip. A friend suggested I try a car cloth because it absorbs a lot of moisture and it doesn’t slip. So I tried that, put the liner over the top and I’ve never looked back! It’s made a huge difference.

Advice for others

Get in contact with other people with a similar disability and find out what’s possible.

When I was training for my first triathlon I had no idea where to begin, particularly with cycling. I found para-athlete Sarah Reinertsen’s website and sent her an email. Within a couple of days she came back with a four page response with all the information I needed! I just used that as a guide book. The reason I can cycle is because of that email.

When we were still in Houston I spent some time chatting to a depressed young man who was just amazed that I was racing with an above the knee amputation. He’s racing now – and that proved to me that it’s not just about being physically able to do it but psychologically able too. So if I can inspire others, that’s what I’d like to do.

Chris running the half marathon in Houston, Texas.
Chris running the half marathon in Houston, Texas.

Don’t let anything hold you back

Despite our injuries we haven’t changed inside. We’re the same people, life goes on and it can be as enjoyable. It’s just a new normal.

Some of the runners I used to train and race with aren’t able to compete any more because of various injuries or health issues. Whereas I’m still thinking “what can I take on next?” – so I’m really not complaining!

I did my first triathlon in 2011 and it was just fantastic to learn a new endurance sport, something I’d never done before and with only one leg – it’s just incredible. And I climbed Kilimanjaro this year with my son – it was a treat for my 60th birthday!

Why I wanted to fundraise for Scope

In 2012 I joined my daughter in her first half marathon, ‘Run to the Beat’. We decided to raise funds for charity and, as a para-athlete, Scope was the obvious choice. Recently, Scope emailed me about Royal Parks and I thought “I would love to do that”. I love those parks and used to train in them when I worked in Central London. It’s also a chance to raise money again for Scope – it’s perfect!

Join Chris and the rest of Team Scope by running the Royal Parks Half Marathon this year. Sign up for £25 today and take on the challenge!

To read more of Chris and Denise’s story visit their website. You can also sponsor Chris here.

“Autism doesn’t stop me from enjoying life” – National Siblings Day

It’s National Siblings Day on Sunday so we chatted to Joe, who has autism, and his sisters Charlie and Lauren. In this blog they talk about growing up together, their achievements and how their lives have been shaped by autism.

Joe

I live in Much Hadham with my parents and my sister Lauren. My hobbies are computers and reading. I also like hiking and indoor climbing. At the moment I’m working for East Herts District Council as a BSU Officer for Environmental Health. It’s basically filing, scanning, taking messages. I like that I get on with everybody, it boosts my confidence and I like keeping busy. People don’t treat me differently. My colleagues just treat me like anyone else, as a friend.

Autism doesn’t stop me from enjoying life

I found out about my autism diagnosis from my doctor and my mum when we arranged for me to have a personal tutor at college. Until then I just thought that’s how being a teenager was. But it doesn’t stop me from enjoying life at all.

Autism might affect me at first when it comes to social situations but I’ve found that it helps me too. I’ll admit, when I started taking phone calls at work it was daunting but I thought I should overcome that problem just by practicing using the phone. Holding back from situations like this wouldn’t do me any good.

My family

My family have supported me and made me feel positive about my life. Like most families we have our ups and downs but most of the time we get on great. We go on trips to the cinema or somewhere to eat, to the theatre or just shopping. Mind you, when it comes to clothes shopping, I do like my sisters but I find the way they shop a bit boring. But I suppose other guys who have sisters are the same.

Joe’s advice for other people

I’m settled at the moment and grateful for everything that has happened to me so far. Where I’m working is the best employment as far as I know. I love living here and I’m not planning to move anywhere else, not for a long time anyway.

From my experience, my advice is to be positive about autism; don’t think of it as a negative thing. If I feel positive about autism and I’m not letting it affect my life too much, other people can do the same too.

Lauren and Joe young
Joe and his sister Lauren when they were young

Lauren and Charlie

Joe is just Joe

Charlie: Joe can be a very sweet, thoughtful, nice guy. He loves computer games and pop music, and he has quite a silly sense of humour.

Lauren: One of the things I like is that he gets my sense of humour. I’m quite sarcastic and they say you’re never meant to be sarcastic to someone with autism because they will take you literally, but he gets me.

Charlie: He once told someone to ‘eat his shorts’ when she told him off, because we used to all watch The Simpsons together when we were little. That always tickles me.

Lauren: Everybody loves him, from his colleagues to his tutors at college. I remember at his student of the year event, people turning round to us and saying ‘Oh you’re Joe’s family! You’re so lucky; he’s such a lovely boy.’

Charlie: He’s painfully honest though. He’d say things like ‘no offense Charlie but shouldn’t you have moved out by now?’

Lauren: One my favourite stories was when he went for his DLA assessment. He’s never really been a drinker, but we’ll have a glass of champagne at New Year’s. At his DLA interview they asked him ‘What do you drink?’ and he said ‘Coke, but occasionally champagne.’ And obviously DLA is a benefit so we had to back track and be like ‘very very very very rarely!’

The flip side

Lauren: You can get jealous of the amount of attention that is paid to them and when they’re allowed to do certain things. When you’re younger you don’t understand why, it’s just “why is he allowed to do that if I’m not?” but as you get older you realise it’s ‘anything for an easy life’ – they’re just simple things that will make him happy.

Charlie: We sometimes felt protective, like any sister would. If anyone said anything about Joe I wanted to rip their head off. Kids can be horrible but they don’t mean anything by it. They just see someone doing something that’s not ‘the norm’ and they comment on it. Lauren has always been better at dealing with it than I have.

Understanding autism

Lauren: When I found out that he had autism I think I was about 7. I remember mum explaining it to me and being like ‘oh yeah, of course’. It just all made sense. I used to spend a lot of time researching autism. I didn’t really know how to talk about it, I didn’t want to talk about it and there wasn’t like a school guidance counsellor or anything. So I just used to read about it a lot.

At school I found out there was a boy who had an autistic sister and I remember being excited to talk to him. But then he told me that she has really high support needs and I was a bit taken aback, because that’s not something I could relate to.

Charlie: I’m the only person I know who’s got an autistic brother, other than Lauren obviously. Some people act like they know about autism in a very patronising way. They don’t mean to be.

Lauren: It’s that innocent ignorance that Scope talks about in End the Awkward.

Lauren and Joe older
Joe and his sister Lauren last year

Sharing success

Charlie: When Joe was in college he won ‘Student of the Year’ two years running. I was head girl at my sixth form and so was Lauren. I love that we’ve all shared the same sort of accolades. That was really nice.

Lauren: I credit a lot of who I am to Joe. I think I’m a nice person and I have empathy for people. For my dissertation at university I did a political research report for an MP. Joe was looking for jobs and I was getting incredibly frustrated because he had all these skills, he was diligent and hard-working – so why wasn’t he getting a job? That’s what I chose to look into. It’s always shaped what I’ve done, including my job today.