All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

I wish I could just ring up an insurance company and get a quote like everybody else!

Disabled people often struggle to access affordable insurance. Our research shows that 26 per cent of disabled adults feel they have been charged more for insurance or denied cover altogether because of their impairment or condition. Actress and disability campaigner Samantha Renke, who has brittle bones, shares her experiences.

Whenever I go abroad, travel insurance is always an issue. Given the nature of my impairment, and the high cost of wheelchairs, I wouldn’t dare go on holiday without it. Unfortunately, the lengthy process and the extortionate costs are something else.

Companies ask me the most intrusive questions

When I phone up to buy insurance, I have to go through a 30 to 40 minute interview. They’re not medical professionals at the end of the line but they probe into my health: Are you suicidal? Are you on medication? Have you had operations?

It’s such a lengthy process. You feel anxious. You feel interrogated. It really infuriates me because non-disabled people don’t have to disclose their mental state. Non-disabled people don’t have to disclose how much alcohol they’re going to consume. Why should disabled people be interrogated?

With brittle bones I get asked if I have scoliosis, a condition where the spine twists and curves to the side. My spine has been straightened and there is no issue, but this isn’t taken into consideration.

Black and white profile shot of Sam Renke smiling
Samantha is supporting our campaign for better access to insurance

My travel insurance is almost as much as my flights

Then the final quote I receive is through the roof. When I went to Mexico for two weeks the quote came out at nearly £500, which was nearly as much as my flights.

I’ve always been able to find a way to pay the extortionate cost for travel insurance, but I know a lot of people wouldn’t manage.  I wouldn’t go on holiday otherwise – I just wouldn’t risk it.

Ironically, I tend to be more vigilant on holiday

The irony is, with me having brittle bones, I’m not going to get on a jet ski! Disabled people on holiday are more likely to be hyper-vigilant because you’re not in your comfort zone.

I think attitudes towards seeing disabled people as ‘high risk’ needs to stop. Anyone can have accidents on holiday, anyone could die on holiday. What’s the justification for the high prices?

Hopefully things will change and disabled people will be able to ring up any old insurance company and get a quote like everybody else!

Join us in calling for better access to insurance for disabled people. Find out more about the campaign and how you can get involved.

We want to find out more about disabled people’s experiences of purchasing insurance. Please get in touch to share your story.

A challenge that reminds us what equality is really all about

Because of her particular impairments, cycling was not an activity Emma had ever considered, until her “super-sporty” colleague and friend Paula proposed that they should ride together in their firm’s annual networking cycling event. In this blog they talk about preparing for the event and their experiences of the day.

Do you fancy coming on a bike ride – I’ll pedal!?

Paula: I enjoy being active.   I am curious to test my limits. I am not a great athlete by any stretch of the imagination – far from it. I do however wholeheartedly buy into the mind-set that anything is possible with committed training.  Over the years, I have cycled London 2 Paris in 24 hours, completed multiple Ironman Triathlons and taken part in Race Around Ireland.

The other great love of my life is friendship. I cherish my friends.  I find their company restorative, life-affirming and joyful.  Emma is my friend and my colleague. When this year’s Leigh Day (the law firm I work for) cycle ride was announced I saw an opportunity to invite my colleague Emma into what I assumed was an unexplored part of the world for her – and because I enjoy cycling so much I just assumed she would too!

I  searched the internet for adapted bikes and was heartened to see so many different varieties. It was clear to me that the means were available – all I had to do next was check whether the appetite was there. Interestingly this presented me with the most significant challenge: how to ask Emma if she fancied joining me on the ride. It sounds so daft now to read that but it is true. I had no idea if my idea would be well received, or come across as insensitive, neither  did I know if  my research into adapted bikes would be seen as patronising. The last thing I wanted to do was cause offence.

Emma wrote an excellent blog about disability and awkward conversations.  So reassured with what I knew Emma thought about starting the conversation, I decided to park my discomfort and simply asked “Do you fancy coming on a bike ride – I will pedal!?”

Paula and Emma on the bike from behind, with other cyclists on the route
Paula and Emma on a trike with cyclists on the road around them

Overcoming challenges

Emma: It actually took a while for me to take the idea seriously! The first challenge was practical – how to find a suitable bike. Leigh Day put us in touch with Wheels for Wellbeing, a fantastic charity which works to remove barriers to cycling for disabled people. On our visit to try out the bikes, the link between wheels and wellbeing was very apparent on the faces of the people riding around the hall. There were people with a variety of imapirments and on a variety of bikes. We opted for a side-by-side tricycle (think Two Fat Ladies, but without the motor). For me this had the advantage of proper seats, so no saddle to feel precarious on, and a design that allowed for only one person to pedal.

The second hurdle – increasingly challenging as the day approached – was to sit with my fear of the ride and not chicken out. A corollary of being disabled is that you have to consciously build whatever measure of independence you can achieve, constructing your comfort zone almost brick by brick. So the prospect of abandoning the freedom and safety of (in this case) my car to effectively get on someone else’s bike was daunting. This mostly manifested itself as fear of accident and catastrophic injury, not because I had any doubts about Paula’s skill as a cyclist (she recently cycle-raced round the entire coast of Ireland!) but because we would be at the mercy of other road users without any protective shell. And more fundamentally, as a passenger, I would not be in control.

Paula and Emma mid race on their adapted bike
Paula and Emma mid race on their adapted trike

I look back on it as a day like no other

The day of the ride was blessed by sunny skies and a refreshing breeze. We were joined by our friend and fellow employment lawyer Tom Brown, who took turns with Paula on the 55kg trike. As the rest of the cyclists took off on their longer routes, we turned off onto our tailor-made route, only to discover later that we had done the whole thing backwards. The beauty of the Warwickshire landscape was a revelation, as was the universally kind reaction of all the people we encountered during the ride including all the drivers that got stuck behind us (this has made me reflect on my own habitual impatience behind the wheel!).

Now, after the event and still in one piece, I look back on it as a day like no other – a day of adventure, laughter, camaraderie and experiencing the countryside in a new way (in a car you are never really ‘in’ nature). Most of all, it gave me a new sense of what real inclusion means. Because for me, the best thing about the day was that despite the lengths to which all the people involved had to go to make it possible – from sourcing the bike, planning our route, exerting unfamiliar muscle-groups, heaving the bike over turnstiles and foregoing participation in the main ride – I never felt that they were doing it to be nice to me. While my physical limitations framed the practicalities of the day, my disability didn’t feel anything more than incidental; I was encouraged and facilitated to join the event not as a disabled person but as Emma, and for me that is priceless.

As we return to our day job of representing people facing discrimination and other forms of mistreatment, we both feel that we will often return to the experience of that ride as a kind of touchstone of what equality is really all about.

Take a look at other accessible events like the Superhero triathlon and Parallel London.

Or you can tell us your story.

Why businesses need to think about disabled consumers

Will Pike is a games developer from London whose parody of Channel 4’s Superhumans advert went viral last year. Tens of thousands of people have signed his petition for better access. In this blog, he talks about how this affects disabled consumers, and what needs to change in media representation.

Back in September 2016, I made a short film to highlight the poor disabled access found up and down our high streets. As a wheelchair user, I wanted to demonstrate how frustrating these obstructions are from my everyday perspective. I also wanted to demonstrate that establishments are missing out. By not being accessible, they’re losing multiple paying customers. Regardless of the fact that I can’t walk or overcome a set of stairs without assistance, I still have money in pocket to spend.

The ‘Purple Pound’ is worth in the region of £240 billion. This spending power is exactly why society should be a more opportune place for everyone. Why are so many businesses unable to recognise this?

We need to see more disabled people in mainstream media

Whilst accessibility is fundamental, it’s no good just making a bunch of logistical improvements if attitudes to disability don’t change. I’m not simply talking about seeing disabled people as an untapped purple cash-cow. I want society to see the purple person behind the purple pound. It’s so important that disabled people are given a more prominent place in mainstream media, where they can contribute to reversing poor public perception and ignorance.

Will in his wheelchair outside a restaurant where there's a step
Man in a wheelchair unable to access a restaurant

Fundamentally, this is the reason why diversity is so important. If we only have a monosyllabic representation of society displayed upon our TV screens, then we’ll continue to limit the prospects of anybody who doesn’t conform to a notion of the perceived norm. We must challenge this. It obviously goes beyond disability to include race, sex, gender identity, sexual orientation and age. It also means evolving our perceptions of beauty and happiness. For instance, in the film ‘Me Before You’, the main character is a quadriplegic chap called Will, who ultimately concedes that life with a disability, even with love and financial stability, is so miserable that he must end it all. What kind of message does this send out to the world? For those with a disability it’s insulting and heartless. While for those without a disability it simply reaffirms the (misplaced) need for pity.

Change is happening, but we need more

But it’s not all doom and gloom. Change is happening, but society needs to do more than the bare minimum. We need to see more disabled people on telly, while ensuring that the inclusion of disability isn’t a token gesture toward equality. There also needs to be a comprehensive strategy to improve the quality of life for all disabled people, positioning us as simply part of the normal spectrum of human experience. Only then will society truly benefit from the Purple Pound.

At present only 2.5% of all characters on TV screens are disabled. It’s hardly surprising then that 81% of the 13 million disabled people in the UK do not feel they are well-represented on TV and in the media. This has to change. It’s time for businesses to recognise the value of the purple pound and put more disabled people at the heart of their campaigns.

Will supports Scope with our mission to drive everyday equality, so that disabled people have the same opportunities as everyone else. Visit our website to find out more about our work and how you can support us.

Read more blogs on the power of disabled consumers.

“We all want to be a part of society don’t we?” Addressing loneliness in disabled people

Yesterday we attended the launch of Sense’s report for the Jo Cox Commission on Loneliness. Their research found that over half of disabled people (53 per cent) say they feel lonely, which rises to 77 per cent for young disabled people. In this blog Scope storyteller and autism advocate, Carly Jones, shares her experiences and ideas for change.

I was really honoured to be invited by Scope to come to this event. As Jo Cox so eloquently put it when she was alive, you think of loneliness and you think of older people, we don’t think of children and young adults. But I know from my personal experience, and the autistic community as a whole, that we are extremely isolated.

My experiences of loneliness

I didn’t get my autism diagnosis until I was 32. You can read more about it in my last blog for Scope. I remember feeling very different at school. I was really anxious. I started realising that I never got invited to birthday parties. I was pretty aware by the time I was in my late 20s that I was autistic, but without a diagnosis it was like being in “no man’s land”.

When I finally got my diagnosis, I filmed it with the help of the National Autistic Society so that no-one else would have to go through this alone, because I felt so alone.

Getting my diagnosis changed things for the better because I could start going to autistic events without feeling like a fraud.  My advocacy work has really helped me find people who understand disability or other autistic people who just get it because they’re autistic too, and you can become friends. So my advocacy work has actually been my social life line. People say “Oh you’re so selfless” and I’m like “No, doing this helps me get out of the house and meet people too!”

Carly smiling with Mel and Juliet from Scope
Carly Jones with Scope staff

Three ideas to address loneliness in disabled people

Better representation in the media: If there’s an autistic person on TV usually it’s a boy who’s about 8-years-old and into trains! It’s really not helping. It’s isolating the thousands of autistic women and girls in the UK who are struggling to have their needs met in everyday society. We need a autistic girl in a big show like Eastenders, who has challenges but strong and sassy.

The education system needs to improve:  Schools need to be more holistic in their approach to difference and really nurture talent. You get awards for being good at maths but what about the artists, the philosophers, the big thinkers, the social entrepreneurs?

I had a really difficult time at school because I struggled with the environment, but teachers just thought I was being naughty. When your needs are not being met it can lead to mental health problems and vulnerability. A lot of the children who come to the events are home educated because they’re not “autistic enough” for a Special Educational Needs (SEN) school but they can’t get the support they need in mainstream school. That can be incredibly isolating too.

More social opportunities: I run a bi-weekly group for young autistic people.  The stereotype is that we never get invited to things so, with the events that I put on, we go to some really cool places and they can invite whoever they like – autistic, disabled, non-disabled. Hopefully their friends will then grow up not seeing autism as this stigmatised thing but thinking “I had an autistic friend in school and we did some really cool things”.

Adults need better groups too. Sometimes you’ll see events for autistic adults and it’s just basically what you would have for a child but for an older audience. You know, we are cool, quite cool and we are adults in our own right and we are responsible people. I think if there were more clubs – which are affordable – there would be more opportunities to meet people.

woman standing in front of a poster holding a magazine
Carly Jones, Autism Advocate

We all want to be a part of society don’t we?

It was fantastic to be at this event. I’ve already got so many emails in my mind that I want to send! Everybody genuinely wanted to hear other people’s stories. The fact that it’s cross party, cross charity, working together, is really fantastic. We all want to be a part of society don’t we? As someone said, it’s not a 10 year solution, it’s more like 40 year solution, but I’m hopeful that we’ll get there.

From 10 July to 13 August, Sense will be leading a coalition of disability organisations, including Scope, to shine a spotlight on the issue of loneliness for disabled people and the steps that we can all take to help tackle it. Head to the website to find out how you can get involved.

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

Why the fashion industry needs to include disabled people

Meghan is studying fashion at the University of South Wales. For her end of year show she designed a sportswear line which is specifically adapted for different impairments. In this blog she talks about the reasons behind it and her hopes for the future.

At school I was good at Product Design and Art, so I knew I wanted to go into a form of design. I wouldn’t really say I was a big fashion person in the typical sense which is why I wanted to do sportswear – it’s design for a purpose.

Discovering a gap in the market

I’m in my third year now and I have to do a final collection. I started looking into adapted clothing and I discovered a massive gap in the market. A lot of the people I spoke to said that the clothing that is out there is quite unfashionable or really expensive. There’s not enough choice for them in mainstream fashion.

I feel like the fashion industry does forget disabled people. When it comes to adaptive clothing, there are maternity sections in shops but disability is almost completely forgotten about. All the clothing is just t-shirts and trousers, there’s nothing stylish, which is what they want.

 

Molly posing on the catwalk

In some ways it sends a negative message to disabled people regarding sports and they might not feel confident enough taking part in sports or going to the gym, especially if they are wearing something they aren’t comfortable in themselves. But I think there has been a change in attitudes more recently because I have been seeing more representation, but I also don’t know if that’s because I’m involved in it, so I’m noticing it more.

Accessibility can be an issue too. The girl who I have as my visually impaired model, she’s got her own business helping websites and apps make their stuff more accessible for disabled people.

Kyron posing on the catwalk

Developing my sportswear line

After talking to various people, I decided to design pieces to suit four different impairments: visual impairments, dwarfism, amputees and down’s syndrome. I got in contact with a charity called “Follow your Dreams” which is for people with down’s syndrome and learning difficulties. I went to a few focus groups with them to meet people who have down’s syndrome and to get information about what they would want out of clothing and sportswear. I also spoke to Disability Sport Wales.

The Fashion Show

For the show, I had four outfits shown and I used the same models that I’ve worked with on my photo-shoots. I’ve got Tony, who is a world champion athlete, Kyron who is a Paralympian. Molly, who has ushers syndrome and runs her own company – Molly Watts Ltd – and finally, Emily who has down’s syndrome. The show was on 26 May and was a great success.

I really wanted to have all disabled models because otherwise it would completely take away the impact. I just hope that I raise more awareness from it and show people what’s possible.

If you have an experience you’d like to share, get in touch with the Stories team.

Photos by Michaela Harcegova.

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Paying extra to live my life

Jean has Ehlers-Danlos syndrome which means her joints dislocate easily and she is in a lot of pain. In this blog she talks about her experience of extra costs and shares her hopes for the next government to bring about everyday equality for disabled people by 2022.

I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair. I was diagnosed with Ehlers-Danlos syndrome several years ago. Since then I’ve been trying to get on and live my life, but I face a huge range of extra costs which makes things harder than they should be.

The things I need to live my life

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set. I’m supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.

I’m a careful budgeter, tracking what I spend down to the penny, but I can’t scrimp on the things I needs or it can take a big toll. I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.

We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.

I have all kinds of other costs. Some are really big. For example, I get a basic wheelchair provided for me, but I really need an ergonomic one to reduce stress on my joints, which is very expensive. You expect that any equipment you need you’d get from the NHS (you get for free), but you only get the very basics. It’s around £1,200 to £1,500 to get a wheelchair that suits my needs, and we couldn’t afford that.

Jean sitting at a desk with an open laptop in front of her
Jean struggles to pay for essential equipment that she needs to live

Everyday equality by 2022

People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.

My future vision for disability equality would be that all buildings and public spaces are built with disability in mind from the outset. Anyone can use accessible facilities but disabled people cannot use all facilities.

I would also like attitudes to change so that disability was seen in the same way as race, sex or gender – just an everyday difference rather than an inconvenience that has to be managed by companies, corporations and institutions.

I want disabled people to be involved (not represented but representing themselves) at all levels of responsibility. The old adage of “nothing about us without us” still isn’t utilised enough in my opinion.

Tell us what being financially secure means to you

Scope is calling on the next government to improve disabled people’s financial security.

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality

Taking risks and the importance of support – why I wrote a book about my recovery

After an accident, Ben was in a coma for a month and has been working on his recovery ever since. He hasn’t let things hold him back, even when others doubted him. To give others hope, he’s written a book about his experiences. In this blog, he shares a bit of his story. If you want more, you’ll have to buy the book!

I got run over in the Dominican Republic. I was on holiday with my girlfriend at the time. It was the day before we left, we went out for a meal and we were walking back, literally a road away from our hotel, and a car span off the road on to the pavement and hit us both. It killed my girlfriend instantly and I was in a coma for a month. I had private healthcare insurance and that paid for me to go to a private hospital while I was in the coma and fly me back to England when I was able to travel.

Starting to recover

I didn’t know anything when I first came out of the coma. I couldn’t recognise people. My parents were there and my family but I couldn’t recognise that they were my family. To start with I couldn’t speak but that came back quite quickly.

I’d lost so much weight and I was so weak. The physio in the hospital was really good. They got me to do lots of things and my strength started to come back really slowly. Once I was out of hospital, the care team supported me for about 5 months. They were very cautious about what I could do. They wanted to risk assess everything. Fortunately I had a carer, Andrew, who’s now become quite a good friend and we just went out and did things. I think my recovery would have been worse if I hadn’t done that.

Head and shoulders shot of Ben

Basically the brain injury that I had is that my neurons were shaken up so much that they lost lots of connections to other neurons. You brain is just a bit messed up. I think over time the brain recreates those connections so it is something that generally gets better but I’m not there yet. Recovery is still an ongoing process.

Not taking no for an answer

I wanted to go to Glastonbury that year and the care team was like “no, not for three years” but that just made me more determined to go. They said recovery would take a long time, anyway and there were leaps I took to aid my cognitive rehabilitation. Leaps I took into the unknown that did help my recovery. These were leaps that people told me I couldn’t do, however, this made me more determined to do this.

Deciding to write a book

When I was seen by Hammersmith hospital they did lots of brain scans and showed them to doctors, saying “What do you think of this guy, how he’s doing?” and from looking at the scan they guessed that I would be doing terribly and would be in a wheelchair. When he told them that wasn’t the case they were like “Really? How?” – it just shows that brain scans aren’t the best way to predict someone’s future. So he said to me afterwards, you need to write about this because it will give hope to other people going through this.

I went away and thought about it a lot. I wanted to get lots of voices in and it took a long time to find someone who could edit it all together. It’s all about me and my recovery from lots of different points of view and it all comes together as a melange of different stories. To begin with it was incredibly difficult but it was good writing the bits from my own perspective, my take on things.

Front cover of Ben's book showing a profile of a person's head pieced together out of ripped up paper

I hope it helps people going through a similar experience

My experience really shows just how much support you need and how difficult it is to find the right support, but given the opportunity you can do a lot. My best support has certainly been from my family and friends but I’ve had help from people from all different walks of life. I hope people going through something similar would get something from it and also their friends and family. This has had an impact on me and my family, massively.

I don’t know what will happen next. I want to promote the book and see how that does. It’s been difficult having to change my plans. To begin with I was trying to get back to where I was, especially in terms of the job I used to do, but I’ve started to accept that some things will have to change. It’s been good to broaden my horizons.

To read more about Ben’s experience, buy his book here.

If you have a story you want to share, get in touch with Scope’s stories team or visit our stories page to find out more.

With dance you’re free to move the way you want. You don’t think about being disabled.

It’s International Dance Day so we chatted to Jess, a 13-year-old dancer, who was born with Bilateral PFFD. In this blog she talks about how she got into dance, what she loves about it and shares a couple of her performances. 

I was born with a condition called Bilateral PFFD. It means that my thigh bones didn’t develop in the womb. I am also missing the fibula, one of the bones in the lower leg. I was born with feet but they were amputated when I was two and a half. I’ve also had a couple of other surgeries to fix a problem with the bone in my right leg.

I got into dance when I was about 11 because I’d been watching a TV show called The Next Step. I really enjoyed the concept of dance and how it impacted on people’s lives. So that was the start of everything. We have a dance hall at my school so during breaks and lunches I’d go in there. We also had dance classes in year 7 and 8, which I really enjoyed. I don’t have dance classes now that I’m in year 9 but on a Tuesday after school I go to a break dance club, then I go to a contemporary dance club. That’s really fun as well.

I don’t think about being disabled

With dance I like the way that you’re so free to move the way you want to and it’s just a really nice, free environment. I really like hip hop and break dance because that’s fun to mess around to. I like contemporary dance because you can show emotions through it and it’s easy to let your anger out or let your sadness out or whatever. I really like Candoco which is a dance company of disabled and non-disabled dancers. I’ve done a couple of things with them.

When I’m adapting my dancing, I just kind of figure it out as I go along. Like, when people are fully using their legs, I might mimic that with my hands or cancel that bit out and carry on with the arms. I’m pretty good at moving across the floor. Practice helps too. Once you’ve done it, especially when you’ve been at a club for a while and you know the choreographer’s style of dance, you can adapt the moves. A lot of my dance moves are improvised – I just move with the music.

I also do wheelchair basketball and sitting volleyball. When I find a sport that I really like or I find that I can move really well with it, I stick with it. It’s nice because you don’t think about being disabled, everyone’s just the same.

Jess Dowdeswell 2

Focus on what you can do

My school is pretty good in terms of inclusivity. They helped me get into sports and accommodated me. It might have been a little bit difficult getting involved in dance at first because I have to adapt it but all the people I dance with are really kind and nice so I’ve been quite lucky.

My advice for other disabled kids would be: focus on the stuff that you can do, not what you can’t do. I haven’t really experienced any negative attitudes but I’m sure there are people who have their doubts. A couple of years ago one of my friends from church, who’s a teacher, was having a conversation with her class about sport and the kids were saying “oh disabled people wouldn’t be able to do sports” that kind of thing. So I  went in with my mum and had a conversation with the kids. It was good to be able to give them a different perspective.

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

‘Tears were shed. Fun was had’ – What it’s like running the London Marathon as a disabled person

Jay and Nicky both ran the London marathon for Scope on Sunday. In this blog they talk about taking on the challenge and share their experiences of the day.

Jay, from Winchester

Head and shoulders shot of a man smiling with a blurred background

Jay, 36, was born without a lower left arm and he wears a prosthetic arm in public. He has just run the London Marathon for Scope without his prosthesis – something he would normally wear to help him ‘blend in’ and feel ‘normal’.

Throughout my life I have always done everything my friends have done, including playing sports – I have even mastered one-handed golf. However, I have always felt self-conscious and experienced people staring, as well as people noticing my arm and then quickly looking away, as if they were embarrassed.

My prosthetic arm is held on by a silicone liner which doesn’t allow perspiration out. If I sweat during exercise water builds up and the arm starts to lose suction, meaning I have to hold onto it while I run, so it made more sense to run without it.

Sunday’s marathon was a big personal challenge, but I hope it helped in highlighting Scope’s work and gave others the courage to be themselves in public. I wanted to show other people, especially children, that if I can do this race without my arm then they can have the confidence to go out and not feel self-conscious about their own disability.

Shot of Jay running in a Scope vest

I woke up on the morning of the marathon feeling nervous. Not only was I going to be running the longest run of my life, I was going to be doing it without wearing my safety blanket, my prosthetic arm. Even going to breakfast in the hotel without my arm felt strange and travelling on the Tube was something I would never have done before, until that moment when I had to make my way to the start line.

I felt great for the first 14-16 miles. I did the first half in 1hr 48 mins. The crowd were fantastic. I had no negativity, no one stared, all I felt was overwhelming support and encouragement. It was liberating running without my prosthetic arm — I felt much freer and the running felt easier by not having to carry the weight around. The real highlight, as for many runners, was that run over the iconic Tower Bridge. And running past familiar faces along the way and at the Scope cheering points!

The last two miles, although painful, were incredible. The ‘J’ was falling off my vest so people were calling out ‘Come on, Ay!’ or ‘Scope Runner’! and other runners on the Mall were trying to encourage me to get across the finish line. I basically collapsed at the end! But I had done it. And I was so pleased to have achieved my target time of sub 4 hours with a respectable finishing time of 3hrs 49 mins.

The marathon was one of the hardest things I have ever done but it was so rewarding. Scope’s support was fantastic – from phone calls in the build up to the race to the post-race reception (and birthday card!). They reminded me why I was doing this and I was so glad I did. I think I achieved my goal of showing the world that disability needn’t be a barrier and to raise awareness of this great charity.

Nicky, from the Netherlands

Nicky running in a Scope vest with her oxygen tank

Nicky, 29, has chronic lyme disease and persistent glandular fever. Due to her conditions Nicky wore an oxygen mask, attached to a 2 kg oxygen tank during the marathon, to allow a continuous stream of 98% oxygen to be pumped into her lungs.

Last year I decided I was just going to do it, and sign up for the marathon. I was on crutches at the time – my illness had left me barely able to walk. I’m a very determined person though and my running training progressed well.  I wanted to show others that nothing should hold them back from following their dreams.

I ran the marathon because I believe I have a choice. I ran for those who don’t have that choice, and those who aren’t yet aware they have the choice.

Photo of Nicky sat on a bench tieing her shoelace

Race day was there before I knew it. I knew I was getting sick because my body was showing symptoms the day before, but I was hoping I’d get to finish the marathon first. I was wrong. Seven miles in I spiked the highest fever I’ve ever experienced on a run. I was able to keep running for another mile, but then had to resort to walking. I threw up (sorry, spectators) and knew I should stop. Along came Jess, some stranger who was running for another charity. She walked with me for a while and got me running again. Just one foot in front of the other. The crowds were amazing. Running with oxygen is hard (I bruised two ribs) and the pain in my lungs was insane, but everyone was rooting for me. I may have cried a few times.

Two miles later it was Jess who had to stop. She was in more pain than I could imagine at the time. She kept telling me to keep going and not let her slow me down, but we were in this together and I wasn’t about to leave her behind. I managed to grab a sign saying “Go Jess” from her friends in the audience and spent a couple of miles getting the crowds to cheer her on the way they’d been cheering me on the whole time. Tears were shed. Fun was had.
She wouldn’t have finished without me. I wouldn’t have finished without her.

Whether you’re physically ill, disabled, mentally ill, or just going through a really rough time: bad days are a marathon. Just keep moving forward the best way you know how. Try not to give up on yourself. And when you encounter someone whose hope is about to slip through their fingers, try not to let them give up on themselves either. We can all do this alone, but we are all better together.

Fancy taking on a challenge yourself? Sign up for 2018 or check out some of our other challenge events.