Featured

An Introduction

First and foremost, welcome to Life on the Slow Lane, a disability and lifetyle blog.

Here I share personal experiences, advice, reviews, interviews and more.

I also write for Disability Horizons, Muscular Dystrophy Trailblazers and Limitless Travel.

Please take a look around my blog and let me know what you think!


My Disability:

I have lived my entire life with a condition called Ullrich Congenital Muscular Dystrophy. It is rare, progressive and sadly widely unrecognised. There is currently no cure for UCMD.

Interview | Emmerdale Actor James Moore

Award-winning ITV Soap Emmerdale recently cast a disabled actor in a pivotal role, placing him at the forefront of a major, developing storyline. Newcomer, 25 year-old James Moore from Cheltenham, Gloucestershire has cerebral palsy. His debut as Ryan Stocks, the long-lost son of Charity Dingle, has been met with universal praise and applause.

The scene-stealer instantly endeared viewers with glimpses of a multi-dimensional character and an attitude to match his onscreen mother’s. Some even say there is a convincing physical resemblance between the two.

Ryan (James Moore) and on-screen mother Charity Dingle (Emma Atkins)

Engaging opening scenes indicate that Ryan is set to be a strong presence; witty, outspoken and unfiltered. Furthermore, his connection with the prominent Dingle family suggests that he is not destined to become a background, token disabled character. On the contrary, Ryan Stocks will be a regular and crucial feature in future episodes.

Like many avid Emmerdale viewers, I was anxious to see who would be revealed as Charity Dingle’s son. To see a disabled actor playing the role is unexpected but as a disabled person myself, I am more than pleasantly surprised.

The casting of disabled actor James Moore is an exciting, encouraging and essential step forward in the inclusion and representation of disability within the media.


1. Hi James, could you please tell Disability Horizons readers about yourself?

So firstly, I have cerebral palsy, but it’s Ataxic CP which basically means that I struggle with movement and coordination. I struggle to walk long distances and there are certain things I know I can’t do, but I’ve adapted to these challenges in my day to day life.
I got into acting because even from a young age, I’ve always been interested in film and the theatre. I struggled with this for a long time because I didn’t know whether I would be able to make a career and earn a living from acting, considering that when I was growing up, there wasn’t many disabled people being represented on film or television.

2. As an actor with a disability, how does this lack of representation make you feel?

I think, in terms of the here and now, societies attitude to non-disabled actors playing disabled characters is too lenient. I mean, we wouldn’t let the blackface caricature continue to happen – this is deemed unacceptable. So why let able-bodied people take the roles of disabled characters?
In order to ‘normalise’ disability on screen, we first have to find disabled actors and give them opportunities rather than taking roles and opportunities away from them. I think that is the biggest and most important step.
This is why I love being a part of Emmerdale – they are showing disability in a new light and letting viewers know that we (disabled people) can be independent and have full, healthy lives. Together we’re proving that disability isn’t a defining factor.

3. What, if any, challenges have you faced in your career due to your disability?

I have faced some challenges but it comes with the territory. At the end of the day, I would most likely have to play a disabled character and they are not easy to come by.
I guess my challenges a lot of the time stem from self doubt, as well as lack of opportunity. There aren’t really a lot of roles for disabled people and so it can sometimes be hard to foresee a lengthy career in the industry.

4. How did the role at Emmerdale come about? Was it always intended that a disabled actor would play the role?

After I got my agent the role came up almost straight away and I really put my all into it. It was always intended for a disabled actor, but not specifically my disability (cerebral palsy). It was incredible how they wrote that in later and they asked me in great depth about my disability and my experiences with it.

5. Your opening scenes with Emma Atkins, who plays Charity, were incredibly impactful. What feedback have you received so far?

The feedback I’ve had so far has been amazing – everyone is so nice! My Twitter is blowing up and all of the feedback I received has been overwhelmingly positive. In that sense I’ve been really lucky.
Some people who have seen me on TV have asked for my advice. To them and any other aspiring disabled actors out there, I would say don’t give up! Take every opportunity you can; do street plays, student films and whatever else it takes. Also take the time to find the right agent – one who you think will be an asset to your career.

6. What does the future hold for your character, Ryan Stocks?

I can’t go into great detail on the future of Ryan, but there’s great humour, unlikely friendships, and gripping drama yet to come. The script is fantastic and so well written and I’m so glad that I can provide an adequate voice for this brilliant character.


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A New Wheelchair

The Waiting Game

*Update* As you may (or may not) know, I am in need of a new powered wheelchair since my ageing Quantum 600 is rapidly falling to pieces (slight problem!) and no longer meets my needs.

The very long process of acquiring a new wheelchair began several months ago. I previously wrote two blog posts outlining my situation, requirements and the plan of action:

Part 1: My Search for a New Wheelchair

Part 2: Wheelchair Services

I received a NHS voucher from wheelchair services at a value of £1700. I’ll be honest, I was amazed to receive this much from them as I was expecting no more than a few hundred quid (if that), based on previous experiences.

£1700 is a lot of money for which I am grateful, but it’s only a fraction towards the cost of the Sunrise YOU-Q Luca wheelchair I now need. Even with basic seating, I have been quoted in excess of £7,000.

I applied to the Joseph Patrick Trust for a grant to help out – this could be (here’s hoping!) as much as £2,500. They are holding a review panel on 1st August and I will be notified of their decision within the next ten days.

So this is currently the stage I’m at in this looooong, slooooow process. There’s nothing more I can do until the JPT have held their review in August. The waiting continues…

You never know, I might get my new chair in time for Christmas! (Don’t mention Christmas. Yes, I know, I know – sorry folks).


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Interview | Steel Bones Charity

On 30th May, a determined group of individuals set off on a truly inspirational challenge to become the first amputees to conquer Mount Snowdon. The team, consisting of 18 amputees from around the UK, were led by Paul Clark, who lost his leg as a result of a bone infection following surgery in 2014. Accompanying him was Leigh Joy-Staines, Co-Founder of the voluntary charity STEEL BONES, which works to connect, support and inspire amputee families across the UK to overcome the trauma of amputation.

I was fortunate to interview both Paul and Leigh, prior to their challenge. Here is what they had to say…


1. Leigh, can you please tell Disability Horizons readers a little about yourself and your disability?

I was born with clubfoot (talipes) and had about 30 operations before the age of 5 to try to rectify them. The Doctors did the best they could at the time. I managed to get through school with just a few more operations, and lived a relatively ‘normal’ life. I was always in quite a lot of pain but this didn’t stop me, as I just loved playing sports and so I didn’t care about the pain.

I was bullied a lot but luckily had fantastic, grandparents, parents, cousins and friends who stuck by me and gave me the strength I needed inside to keep going. It impacted massively on my anxiety but I hung onto those people around me. Looking back, I was actually quite a popular kid. I just let the nasty name calling go over my head.

I left school early and started working immediately. I always worked hard and partied hard at weekends. But at the age of 23, after working a job with a long commute which involved a lot of walking, I couldn’t take the pain any longer. I then went to see my GP who referred me to an orthopaedic surgeon at Guys Hospital (London).

The surgeon seemed to think it would be a simple operation to put things right. Unfortunately, he hadn’t completed the proper pre-operative checks and didn’t have my notes in the operation. [As a result] he severed my last remaining artery and the nurses didn’t realise the foot’s blood supply was cut off until it was too late. All I remember is my girlfriend (now wife) turning up with my mates to take me home, and I was rushed into an ambulance.

The team at St Thomas’ Hospital were amazing. It became a second home for me since I was there for 5 months whilst they tried to save the leg, and then whilst I learnt to walk again. Since the amputation, I’ve had lots of problems with my stump (which I call JOYBOY) such as neuromas, spurs and infections. My other leg is also now disintegrating as it has taken a lot of pressure since the amputation. I’m now working with some excellent surgeons and physiotherapists to hopefully rebuild it, otherwise I will have to lose that leg too.

Emma and Leigh Joy-Staines

2. You are one of the founders of STEEL BONES. Why did you decide to establish the charity?

We had no proactive support at the time of amputation. My girlfriend (now wife) and I just tried to pretend everything was fine and ‘normal’. We didn’t take stock of what had actually happened. I’m still dealing with the trauma and am only just really accepting what happened – It was such a huge shock. When you still want to be the lad about town but your body fails, it breaks you. But, I’ve held on tightly to my family.

We phoned several amputee charities asking for support, but none came through. We felt so lonely and isolated, particularly once our children arrived. Our son Teddy was being asked lots of questions: ‘Why isn’t your daddy strong?’ and, ‘Why does he wear a boot?’

This really hit us hard as we didn’t know how to deal with the outside world, only our little unit. So, we decided to start meeting other amputee families.

It all started with a Facebook group and it’s gone from strength-to-strength.

We have met so many amazing people and it gives us great motivation to know that we are not alone. The charity focuses on the entire family, and not solely the amputee, because an amputation affects the entire family unit including friends too.

We provide support packs and create friendships with families to ensure they have the tools and advice they need to achieve their goals. We also run a weekly fitness club and an amputee football club with Cambridge United Trust and Cambridge FA. Furthermore, we are launching a series of children’s books based on amputee family stories. We also run a schools workshop programme with ‘If Not Me Inclusion Coaching’, which focuses on inclusive sports and raising awareness of amputees.

These projects are very close to our hearts as we know the impact they make. We hope to avoid what our son endured in his first couple years at school, and to ensure no amputee family feels isolated. We also have an events programme that all amputee families are welcome to join.

Our biggest event of the year takes place on 29th July 2018 in Cambridgeshire. To find out more join our Facebook group: STEEL BONES or sign up to our mailing list http://steelbone.co.uk

3. Can you tell us exactly what this particular challenge involves?

The challenge involves a group of amazing amputee families climbing

Mount Snowdon. We have been training for the past 6 months and have endured falls, knocks, sores, blisters, aches and pains. Despite this, the hugely inspirational group has kept on going. It is just so exciting to see them achieve this incredible goal.

STEEL BONES is entirely voluntary so the funds raised by this go directly to amputee families in the UK. It provides a lifeline by putting on more clubs, events and proactively supporting the amputee community.

4. Paul Clark, you’re heading the challenge to climb Mount Snowdon in May. How and why did you first become involved with STEEL BONES?

After my amputation on 30th May 2016, it was a very hard and lonely time for myself and my family. We didn’t know who to turn to for help and support and we felt very isolated. We didn’t know what support we could get or where to even start looking. We found there to be a big lack of understanding in the public and government as to what amputation means for an individual and their family.

We came across the STEEL BONES Facebook group and realised they were local, and had been in a very similar situation to us when Leigh lost his leg. They were offering free help and support to amputees and their families, so we contacted them for some advice.

Their support from day one was fantastic. Not only did they give us advice on who to contact regarding different matters, they also helped from with forms, letters and so on until we were sorted. Their support didn’t stop after this – they continue to support myself and my family with information and advice. They have also introduced us to many new friends in the same situation. It has become one big happy amputee family!

Paul Clark, who led the team of amputees in their challenge to climb Mount Snowdon

5. Where did the idea come from?

My wife and I have always wanted to climb Mount Snowdon, so we said let’s still do it and raise money for STEEL BONES to thank them. The money raised will allow them to continue supporting other amputees and their families throughout the UK.

6. What are you hoping to achieve as a result of the challenge you have set for yourselves?

Not only is this a personal goal of ours, and a massive challenge, we also hope to promote amputee awareness throughout the UK. We want people to be aware that just because I have lost a limb, it doesn’t make me any different, and I can still overcome challenges like anyone else.

I have managed to get a great team to join me on this amazing adventure, and it’s great that I have managed to pull together a group of amputees from around the UK. Not only will this bond us as a group, it will challenge us all and show that amputees can do anything, whilst also raising a fantastic amount of money for STEEL BONES.

Show your support for the team and make a donation by clicking here.


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Ambulance Action

Improving Emergency Care for people with neuromuscular conditions

One of many campaigns fronted by Muscular Dystrophy UK is the #AmbulanceAction campaign. MDUK are working alongside health care professionals and people, like me, with neuromuscular conditions to improve emergency care in the West Midlands and Northern Ireland.

Since I am resident in the West Midlands, I was invited to be a part of this long-running campaign.

👆 See above to read my response to the latest developments in Oswestry.

To find out more about the MDUK #AmbulanceAction campaign, click here.

You might also be interested to read my previous blog post – Emergency Care: My Experience.

Britain’s Got Talent | Disability Representation

Are you a Britain’s Got Talent viewer? If like me, you have tuned in this year, you too may have noticed that the semi-final line-up features a number of diversely disabled acts – more so than previous years.

As a wheelchair-user myself, I am thrilled to see disability increasingly represented and celebrated on such a high-profile primetime TV talent show.

Lee Ridley AKA Lost Voice Guy

Lee Ridley, also known as Lost Voice Guy, is the first act through to the live final, having won the audience vote on Monday night. Hotly tipped to win the competition, Lee 37 from Newcastle, has Cerebral Palsy and is unable to speak. This uniquely speechless comedian uses a Lightwriter – a voice synthesiser, and as he says, “walks with a limp”. He is a BBC New Comedy Award Winner who wears slogan T-shirts depicting his self-deprecating and inclusive sense of humour – his audition shirt read, ‘I’m only in it for the parking’.

Lee Ridley AKA Lost Voice Guy

Lost Voice Guy wowed audiences and judges alike with his witty routines that draw attention to and highlight the humour in disability, thereby breaking down barriers and removing social stigma. The “struggling comedian who also struggles to stand up” joked that he “really is disabled. It’s not just really good acting”.

Robert White

Fellow comedian Robert White who has dyslexia, autism and Asperger syndrome, also made it through to Sunday night’s final with his hilariously quirky musical comedy act. The 41 year-old music teacher from West Sussex describes himself as “the only gay, Aspergic, quarter-Welsh comic on the British comedy circuit”.

Though his audition proved impressive, White really upped his game for Wednesday’s live semi-final, in which he employed natural comedy timing to mock the four judges. Accompanied by a keyboard, Robert White flirted with his “next boyfriend” David Walliams and quipped that Amanda Holden dresses far too young for her age, while Alesha Dixon dresses like a hooker! This was met with unanimous rapturous applause and laughter.

Comedian Robert White

Most notably, Robert directly referenced the sensitivity surrounding his condition during his live act: “I am aware that if you mention autism on stage sometimes audiences can go awkward and silent”. This effectively challenges viewers to consider how they receive and react to those of us with a disability, thus initiating the conversation.

Calum Courtney

This year’s youngest finalist is 10 year-old singer Calum Courtney who has a mild form of autism. Calum sailed through to the final after melting hearts with his reworked rendition of Stevie Wonder’s ‘Isn’t She Lovely’, in tribute to his Mum. He didn’t win the overall public vote, but having made it into the top three, was put through by the judges.

Calum Courtney

Calum was part of the line-up at the NSPCC Winter Charity Ball in aid of the National Autistic Society. His endearing and confident audition performance of Michael Jackson’s ‘Who’s Loving You’ caught the crowd’s attention and earned a standing ovation. It just goes to show that even at such a tender age, autism need not be a barrier to success.

RISE Unbroken

Semi-finalists RISE, a group of young dancers from Manchester, presented two moving performances, though they did not make it through to the grand final. Group member 13 year-old Hollie Booth was caught up in the Manchester Arena bombing at an Ariana Grande concert in May 2017. Hollie’s aunt Kellie was one of 22 people who died as a result of the terror attack.

Manchester dance group RISE

Hollie broke her knee, left foot and was left with nerve damage. She has so far had 11 operations and now has to wear an orthotic and use a wheelchair. She was keen to return to the group and continue dancing despite her trauma and the injuries she suffered. As a mark of solidarity and inclusivity in the face of adversity, all RISE dancers incorporate wheelchairs into their routines. The tearful judges hailed the girls as “inspirational”. In this case, I think the term is justified!

B-Positive Choir

Final mention goes to B-Positive – the official NHS Blood and Transplant choir. The choir consists of 60 singers all of whom suffer from, or are directly affected by, sickle cell disease. Their aim is to raise awareness of the urgent need for blood donation. They sang the “powerful” anthemic hit ‘This is Me’ (a true statement of the importance of diversity). They are hoping for a wild card pass through to Sunday night’s final.

B-Positive Choir

The inclusion of so many disabled acts in this year’s line-up will, I believe, have a positive impact on the disabled community. It suggests and promotes forward-thinking, equality and disability in the mainstream. Furthermore, it inspires open discussion of diversity in all its forms whilst also encouraging society to focus on ability as opposed to inability.

Widespread visibility of disabled talent within the media will naturally be met with questions and curiosity. But that’s okay because it signifies progressive inclusivity.

Many people are talking about the acts they have seen on Britain’s Got Talent. Audiences are realising that it’s acceptable to celebrate disability and to laugh about it! It is okay to ask questions since this educates and informs, thereby resulting in familiarity, recognition and ‘normalisation’.


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Interview | Becky Dann

Art & Disability

24 year-old Becky Dann has kyphoscoliosis – a severe curvature of the spine. She was diagnosed at the age of four and became a wheelchair-user from the age of nine. She was subsequently bullied at school for her physical appearance.

You may recognise Becky as one of the participants from series 8 of the hit Channel 4 television show, The Undateables. But what you may not know is that she is also an accomplised artist.

As someone who has studied art throughout school and at undergraduate level myself, I thought it would be interesting to chat with Becky about her striking photography series, ‘I’m Fine’, and her work with Shape Arts, London.


1. Can you tell us about your photography project entitled, ‘I’m Fine’?

‘I’m Fine’ is a project that started in my second year of university. For most of my childhood, I was told I was different (due to my disability) and I didn’t understand it because I felt just like everyone else. University was when I really started to accept myself and how I looked. It was also the time when I started to realise that it wasn’t okay that I was constantly treated differently instead of an equal.

The project originally started with a research and development period, which looked at dating with a disability. As someone who started out very much hiding my disability online, I then explored why I did this and what the outcome was once I told someone. I then looked at the difference in dating online when my disability was put out there publicly from the outset.

As time went on I started to realise that looking deeper into things, I wanted to use this project as a ‘self-exploration’ project as well as a ‘challenging perceptions’ project. I was okay with how I looked – I wanted others to know that I’m okay and that people shouldn’t see me differently.

I decided to take some self-portraits in the studio as I wanted to show myself with my scoliosis on show as if to say, ‘this is me, I’m fine’.

Over the second and third year of university, I really explored this concept deeper and decided to develop the self-portraits into a live art piece. I wanted an audience and I wanted to challenge how comfortable they were around someone with a ‘different’ body. So, I advertised around my university – it was explained to audience members that the piece was a participatory piece whereby they were invited to paint a handprint and place it somewhere on my body, wherever they felt comfortable. Of course I kept my modest areas covered so people couldn’t take advantage, but I left my back clear.

It was really interesting because I was effectively a ‘statue’ and couldn’t talk. People were told to put the handprint anywhere on my body, but they continued to try and ask me where was acceptable. At one point I heard someone say, “There’s nowhere left”, though I knew full well that my back had not been touched. It wasn’t until one confident person put a handprint on my back that suddenly everyone realised it was okay.

© Copyright Rebecca Dann
© Copyright Rebecca Dann
© Copyright Rebecca Dann
© Copyright Rebecca Dann
© Copyright Rebecca Dann
© Copyright Rebecca Dann

2. How was your university experience (in terms of inclusivity and being a student with a physical disability)?

When I first started university (the University for the Creative Arts in Farnham, Surrey) I was a full time wheelchair user with no clue what I was entitled to and I didn’t even know I was dyslexic. I remember first viewing my accommodation and quickly picking up on the fact that they seemed to put all disabled people together in one building, which was incredibly segratory.

I struggled to start with because I started to realise that a lot of my curriculum involved doing outdoor photography shoots, and I wasn’t sure how to do this without help – I couldn’t physically carry everything. I eventually asked for help and was pointed to our student services, where I was soon set up with a support worker which became really helpful to me.

In school, I had always struggled to retain information and although this was passed off without concern or investigation, I knew something wasn’t right. It wasn’t until I reached university that one of my tutors hinted that some students may want to go to student services for dyslexia support. I decided to seek help and see if that was the problem, and low and behold it turns out that I am in fact dyslexic! This meant I was given support with essays which became so useful since it really helped me to work to my full potential. I went from being a C/D grade student in my first year, to an A/B student in second and third year, eventually graduating with a First Class Honors degree.

I also gained enough movement in my legs during my second year, enabling me to start walking more with a crutch. Thankfully, my campus was so small and so going from campus to class was simple for me. It was great to finally feel independent.

Admittedly, I was really lucky at university as I had very supportive tutors around me, and I was there when DSA (Disabled Students’ Allowance) was in full force. But it was in my final year at university that I really started to notice how things needed to change for disabled students. Consequently, I ran for Disabled Students’ Officer in my Students’ Union elections, so that I could help represent my peers on campus. I won the election and helped make changes which was great. This then spurred me on to run for Campus President at my Students’ Union, where I was able to continue representing disabled students. I got to sit on boards within the university such as the Equality and Diversity board and the Inclusion board. I was able to speak out on behalf of disabled students, and help the university to become more inclusive. Furthermore, I was asked to speak at conferences with university staff about the importance of an inclusive education, and I was told by tutors who worked there that I’d made a real impact which meant a lot to me.

I was incredibly sad to say goodbye to my university, but I had the best years of my life there and I still speak to some of the staff!

3. What does your job at Shape Arts involve?

I work for an arts commissioning programme called Unlimited, which is run by Shape Arts and Artsadmin, two arts organisations in London. I am based at Shape Arts, an organisation working in the arts sector to improve access for and representation of disabled people, part of which is providing and sharing opportunities for disabled artists.

Unlimited commissions disabled artists to create their work. We have had some amazing artists such as Jess Thom from Touretteshero and Jackie Hagan too.

I am a trainee and have been working there just over a year. I am a key contact for a few of our artists, which means I am their point of call with anything regarding their commissions. When our current commissions are ready to tour, Southbank Centre has a festival at which some of our artists get to show their work. The next festival is 5 – 9 September 2018.

My role allows me the opportunity to do a lot of great things such as travelling to see different artworks, which I love. I recently went to Bristol and saw ‘The Nature of Why’ by Paraorchestra, another Unlimited commission at The Bristol Old Vic. I had already heard about Paraorchestra through working here, though I hadn’t seen any of their work and so I wasn’t entirely sure what to expect.

As someone who isn’t usually good with immersive art, I was kind of nervous when I found out that the performance was around the audience and that dancers could come up to you. But as soon as the musicians started singing and the music started, there was a sudden wave of emotion that came over me. I listened to the whole piece so intensely and I felt so much emotion that I ended up crying! It was amazing and made me feel incredibly happy. I really love my job!


🌟 All images courtesy of Becky Dann.

Follow Becky on social media:
Twitter: @BeckyDann
Instagram: BeckyDann
Website: rebeccadann.wixsite.com/photography


I’d like to thank Becky for taking the time to speak with me and answer my questions.

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Going The Extra Mile for MDUK

On the weekend of 12th May, my amazing brother and his two friends took on The National Three Peaks Challenge. This involves climbing the three highest peaks of Scotland, England and Wales, within 24 hours.

The total walking distance is 23 miles (37km) and the total ascent is 3064 metres 6o(10,052ft). The total driving distance is 462 miles.

The three mountains are:


All of this is in aid of Muscular Dystrophy UK.

As you may already know, I have lived my entire life with a rare form of MD – Ullrich congenital muscular dystrophy. Having witnessed his little sister grow up with the effects of this muscle-wasting condition, my brother decided he wanted to do something – something big! – to help make a difference to the lives of others living with MD. That something is the National Three Peaks Challenge.


Report from my brother:

Friday 11th May: We drove ourselves from Worcestershire and stopped overnight at a place called Fort William in Scotland.

Saturday 12th May: The challenge began at 16:40 as we started to climb Ben Nevis, in sunny but very warm weather (a little too warm). We peaked in 2 hours 10 mins, reaching the snowy summit at 18:50. Visibility was perfect and gave us spectacular panoramic views of the other mountains in the area.

Ben Nevis, accomplished!
Ben Nevis! One peak down, two to go…

We then ran down to the car in a total of 3 hours 45 mins, before driving through the night to the hamlet of Wasdale Head in the Lake District, to start our climb up Scafell Pike.

04:19 – Peaked at Scafell Pike

Sunday 13th May: It was pitch black and rainy all the way up to the top (04:19), but the weather cleared on the way down and the Sun started to rise, making it easier to navigate. However, our descent took longer than we hoped due to extremely slippy rocks underfoot, combined with a lack of sleep.

View over Wast Water at first light during descent down Scafell Pike

Finally, we drove on to Pen-y-Pass in Snowdonia to begin our climb up Snowdon. The weather was perfect – sunny with very clear visibility. We took the Miners Track up to the summit (12:30) and then the Pyg Track back down.

The hardest part for me was the first 30 mins of our trek up Ben Nevis. It gets incredibly steep straight away and in the extreme heat I soon got jelly legs. But as we got closer to the summit, it cooled down and I was able to splash my face with cold water from the stream coming down the mountain.

Collectively, we all found the biggest challenge was to keep going despite the lack of sleep. It was hard to maintain enough energy and endurance to stay focused and not trip over!

Challenge completed at: 14:43 in 22 hours 3 mins


I would like to say a personal thank you to the best big brother anyone could ever wish for! We don’t do gushy at all, so he’s probably reading this wondering why I’m being so nice. Rob – you know how I feel. Loves you more x

The bro x

To Adam & Dan – thank you both for being such good friends and for selflessly offering your time and efforts. It means more than you realise.


To anyone reading this, please share the link and if possible, make a donation to support the great work of Muscular Dystrophy UK:

https://www.justgiving.com/fundraising/3peaksformd

The Disabled Blogger Tag

In today’s post, I answer some great questions devised by Elin, over at my blurred world, who created the #DisabledBloggerTag.

There are many blogger tags out there, though this is the only one exclusively for disability bloggers – So, my thanks go out to Elin!

I’d also like to thank my friends, Fi Anderson (Mum, disabled blogger and campaigner), Simply Emma (UK travel and disability blogger) and the lovely Claire from a journey in my wheels, for including me in the Disabled Blogger Tag.

Without further ado, let’s get going…


1. When and why did you start your blog?

‘Life on the Slow Lane’ was founded in October 2016, so I’m still relatively new to the blogging scene. I had contemplated it for many months prior, but put it off as I simply thought no one would be interested in anything I have to say. I also didn’t want to rush into it without some sort of plan and objective. But, after much encouragement from friends who told me to just “get on with it”, I finally set up my website and immersed myself in writing. I do however, regret the name of this blog! On reflection, I really wish I had given it more thought.

2. Did you intend to talk about your disability online from the beginning?

Yes, this really was my primary focus. They say, to write well you should write what you know – and having lived with my condition (Ullrich congenital muscular dystrophy) from birth, I would say this is my expert subject!

3. Have you ever been sceptical about talking about your disability online?

Yes, in all honesty I am still often sceptical. I’m actually an incredibly private person. I prefer to remain anonymous and I don’t generally talk about myself or my condition to anyone. Even my closest friends are oblivious to many aspects of how my physical disability affects me.
Having said that, I am aware of how important it is to share knowledge and experiences. By offering wisdom, advice and information via my online platform, other people living with or affected by a disability could benefit.
Furthermore, my form of muscular dystrophy is particularly rare and unheard of. I therefore feel it is my obligation to raise awareness of Ullrich CMD.

4. What kind of response have you/do you receive in terms of your disability related blog posts?

Firstly, I am surprised to receive any feedback at all! As I said previously, I always assume that no one would be interested in anything I have to say. So to read positive comments from complete strangers really is a much needed confidence boost. Knowing that something I have written has helped or provided comfort to at least one person, makes it all worthwhile.



5. Do you write/talk about other topics apart from your disability?

First and foremost, ‘Life on the Slow Lane’ is a disability blog. Not only do I share personal stories and discuss my own condition, I also cover a variety of disability-related topics and feature interviews with disabled people.
I do occasionally write about topical issues too:

  1. There’s no reason to not vote!
  2. A United Kingdom
  3. Armistice Day: Remember & Reflect

On my blog you will also find a few book and film reviews as well as seasonal posts, such as my Halloween specials.

6. What steps do you take to make your blog accessible to yourself as well as other people?

I do the majority of my blogging from my Android Smart phone. It is so much easier than struggling with a heavy laptop, plus it means I can write and edit anywhere and at any time.

Over time, I have tried to edit the design of my blog, in order to make it more accessible for disabled readers. I like to use large-scale images, clear font, larger titles and subtitles, as well as dividers for visual clarity. I have also chosen two contrasting font colours – red and green. Because of its wavelength, the colour green is generally considered to be the easiest for the human eye to see.

Needless to say, there is much more I need to do, to make my blog as accessible as possible. Until now, I haven’t given this issue a great deal of consideration (so, once again, thanks to Elin for bringing it to my attention). I would therefore be incredibly grateful for any suggestions and recommendations from you guys – please leave a comment!

7. What is your favourite thing about blogging about your disability?

Since becoming a disability blogger, I have been fortunate to get to know many of my peers within the disabled community. Some have even become great friends.
I have received a lot of support and learnt a great deal from other people affected by disability. As a result, my outlook on life has changed somewhat, and so too has my attitude towards my own disability.
I do hope that, in a small way at least, my blog is a beneficial contribution to society. The ability to positively affect and influence other individuals through my writing is incredibly rewarding.

8. What are your top three disability related blog posts that you’ve ever published?

  1. My Life with UCMD
  2. Muscular Dystrophy: A Guide for Parents
  3. My Life: Carers, Hoists & Occupational Therapists

9. Do you think that the disabled blogger/YouTube community is overlooked?

Unfortunately I do think it is very much overlooked. However, I do think things are slowly improving as more disabled bloggers are being recognised and applauded for their great work in raising awareness.

I guess essentially, disability isn’t a ‘cool’, popular or fashionable subject to blog about. A disability blogger is highly unlikely to reach an audience as sizeable as a non-disabled beauty blogger, for example. Disability, though it affects so many people (more than you might think), it is not a universal topic with mass appeal.

10. Do you find it difficult to think of new disability related content to publish?

It can be difficult to think of new ideas and original content, that is both interesting and relevant to my readers. I’ll admit, I do often feel like I’m playing catch-up to other, higher profile disability bloggers (which is ridiculous, I know, and a consequence of my own insecurities). I have to sometimes remind myself of why I’m blogging.

11. Do you think blogging about your disability helps to change people’s perceptions?

I can only hope it does! Changing people’s attitudes and perceptions is a very slow process, and one that requires disability bloggers and campaigners to unite and work together in solidarity. Thankfully, the disabled blogger community is amazing and incredibly supportive – an intimate community that I am proud to be a part of!

12. Who do you tag?

It would be great if EmmaGemmaBloo ‘n’ Stuff, Kerry, Mitch, Aidan, Ross, Lucy, Leah and Gem could join in the #DisabledBloggerTag.

I’d also love to hear from you guys! – please feel free to leave a comment and offer your answers to any of these questions.


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Interview | Daniel Baker

Daniel Baker is a first time actor who landed the role of a man with Duchenne muscular dystrophy, in the primetime BBC1 drama, Requiem. Most notably, Daniel himself has the condition.

Muscular Dystrophy UK contacted Daniel after the production team specifically set out to cast someone with the disability. He appears in the psychological thriller, alongside Brendan Coyle, best known as John Bates from Downton Abbey.

The newcomer, from Cheltenham, is one of the few men with Duchenne muscular dystrophy to reach his forties. Here, he talks openly about life with a muscle-wasting condition, tells all about his debut acting experience, and shares his views on able-bodied actors portraying disabled characters.


1. Could you please tell us a little about yourself and your disability?

I am a 43 year-old man with Duchenne muscular dystrophy. I had a fairly normal childhood until the final years of primary school, when I could no longer walk and had to start using a wheelchair. I attended mainstream schools, followed by university. After university my condition worsened and I was given a ventilator to help me breathe. Due to this and some medication which caused negative side effects such as panic attacks, I ended up being bed bound for nearly ten years. However, I eventually managed to control my anxiety. Then, after raising the funds for a new powered wheelchair, I faced the outside world again.

Duchenne is a condition where muscles get progressively weaker over time. We usually end up in a wheelchair by our early teens and require ventilation in our twenties. Although things have progressed medically, life expectancy is still in the 20’s. Some of us are living far longer than this, but sadly it’s still rare.

I try to live as normal a life as possible, and although there are always going to be limitations, I push myself and use technology to find ways around them. I manage to get out most days to either explore my hobby of photography or just walk my dogs. The dogs have their leads attached to my wheelchair so I can actually walk them myself. I still need someone with a pooper-scooper following me though as I can’t reach to do that job!

2. You achieved a BSc(Hons) in Applied Physics from Oxford Brookes University. How was your university experience in terms of inclusivity and disability awareness?

I attended university and got a government grant to pay for everything. I also received another grant called the Snowdon Award, which paid for travelling and a carer to help me. Nowadays things look much harder for anyone wanting to attend university and I doubt I would have been able to afford it myself.

I decided to commute each day as living on campus and finding accessible accommodation would have been very difficult for me. The journey varied between an hour and two hours each way, and though this was very tiring, it gave me chance to read text books and revise while in the car.

One consequence of not living closer was that I missed out on the social aspect of university life. I wasn’t overly bothered at the time as I’ve always liked my own company and was really there just to learn. But now when I look back, I think more socialising may have done me good.

The university itself was fairly accessible. There was one lift that was tiny and would break down on occasion, necessitating me being carried down stairs in my wheelchair- not a pleasant experience!

As I studied physics, I did need help performing the experiments, though luckily most lab work was done in groups so it wasn’t a big issue. The staff were always helpful and treated me like any other student. I can’t really complain about the inclusiveness and accessibility at all. Yes, some things could have been better, like having more accessible toilets. But overall it was a good experience and I’m grateful to have had that opportunity.

3. You recently featured in 2 episodes of Requiem (congratulations!) How was this experience and what challenges did you face as a disabled actor?

Daniel with actor and co-star, Brendan Coyle

Appearing in Requiem was an amazing experience! I had never acted in any fashion before, other than primary school plays where I usually hid in the background. So the whole experience was something new to me and pushed my boundaries – something I try to do as much as possible these days.

I think the casting process was likely a lot easier due to my disability. They were looking for someone with my specific condition and there aren’t that many of us around. I sent a few headshots and pictures of myself, then chatted with the production team over email. I was offered the part within a couple of days.

Daniel at Aston Hall in Birmingham

As for difficulties, I think they probably aren’t the things people would expect or think about. As soon as the offer of a role came up, I had to check that my personal assistant would be available and flexible to take me. I had to think about transport and did some research to find which trains had the best accessible carriages without any changes. I even did a test run the week before filming just to make sure everything would go smoothly. I had long chats with the production team to ensure the correct equipment, like a portable hoist, would be available on the day. They were very thorough and wanted to make sure I was safe and comfortable. This is something most actors wouldn’t need to even think or worry about.

I was extremely lucky to be working with a great team on Requiem. They ensured I had my own room on set, organised taxis and sent a runner to meet me at the train station. They also had a medic check my needs on set in case of emergency, and made sure the set itself was accessible.

The day itself was perfect. Everyone (cast and crew) welcomed me into their family and I felt right at home. I didn’t feel nervous at all and the scenes were all shot in one take, which I think really impressed them. I felt just like any other actor – I was treated as one of the team and not “special”.

4. As a disabled actor yourself, how do you feel about able-bodied actors portraying disabled characters on stage and on screen?

I think it depends on context and certain circumstances. Sometimes it is probably necessary, especially when the condition being portrayed is progressive, and when a good actor who has done plenty of research plays the part it can work well.

In general though, I think disabled actors playing the parts of disabled characters is a lot more authentic and should be done as much as possible. We have skills and knowledge that could be invaluable to the production team.

There is also the aspect of showing disability to society so we are more accepted and understood. This can’t really be achieved unless the actor is disabled themselves. The more we (disabled people) are on screen and included in mainstream media the better.

5. What advice would you give to others like yourself, who are living with a muscle-wasting condition?

I would use the old cliché, ‘live every day to the fullest’, because you never know what is going to happen tomorrow. I take risks everyday. For example, if my ventilator stops working while out, I’m in big trouble!

But we need to just get on with life and not worry about every possible risk, otherwise we would be stuck inside doing nothing. This can and does lead to depression, which I have experienced myself.

Having said that, I do believe that people in a similar position as me should embrace and be proud of their internal strength and determination. Yes, we face an uncertain future, most without hope for a cure and declining health. But this gives us an advantage over able-bodied people – we are used to overcoming adversity and major obstacles in life.

Life with Duchenne muscular dystrophy isn’t easy! Maintaining happiness and finding enjoyment in things is an every day struggle. It can be incredibly frustrating too.

There are days I wish I could get myself up, washed and dressed. I would drive my van to the woods, venture to where it would be impossible for a wheelchair to go, and just be alone, listening to nature.

For people like me with a muscle-wasting condition, it isn’t a simple life. There are many things we won’t experience, so I would advise you make the most of what you can do and take advantage of every opportunity.

Some things I have done, like appearing on a primetime BBC drama, most ‘normal’ people will never get to experience.


Daniel features in episodes 4 and 6 of the BBC drama Requiem. The whole series can now be found on the BBC iPlayer.

Daniel is also a trustee for the charity DMD Pathfinders. View his IMDB page here, and find out more from the man himself by visiting his personal blog.


I’d like to thank Daniel for taking the time to speak with me and answer my questions.

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Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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