Interview | Singer-Songwriter with Muscular Dystrophy

Tabi, who has SMA Type 2, on her debut album, ‘I Wrote Life’

Album cover for ‘I Wrote Life’, by singer-songwriter Tabi

Tabitha ‘Tabi‘ Haly is a 35 year-old singer-songwriter from New York City. She has Spinal Muscular Atrophy Type 2, a progressive condition, causing muscle weakness and contractures.

Tabi cannot walk and therefore uses a powered wheelchair for mobility. She is now unable to use her hands to feed herself and uses voice dictation software. With 24/7 support from “home health aides” and physiotherapy to maintain as much strength as possible, Tabi leads a highly proactive lifestyle.

I recently had the pleasure of talking with Tabi about her music career and debut album entitled, ‘I Wrote Life’, (released January 2019).


Tabi, what and who are your biggest music influences and why?

I grew up listening to classic rock, pop and R&B, but I appreciate all genres. I enjoy catchy, soulful melodies, so that has heavily influenced the songs on my album. I am most inspired by artists who write their own songs because that is what I like to do. I love timeless songs and I feel motivated to write when I hear something that I wish I had written myself. I also admire artists who write about personal experiences.

I love Mariah Carey because she writes songs that touch upon insecurities and feeling like an outcast. She writes about her faith and she has clever lines and an impeccable vocabulary. I also love singer-songwriters such as Anna Nalick, Sara Bareilles, Christina Perri, and Jason Mraz. They write about love and heartbreak, which I can relate to.

I also admire a wide vocal range because it is fun to sing songs that are vocally challenging. That is when my R&B influences come into play. It’s really enjoyable to improvise and jam along. I like to challenge myself in general, so I definitely apply that to my music in terms of the lyrics, melody, and vocal styles.

Tabi performing live in her powered wheelchair

How would you describe your debut album?

I would describe my album as real and soulful. I allowed myself to be vulnerable to reveal my struggles and hopes regarding my disability, love, and life in general. The different subjects lend to the spectrum of dark and light tones.

My album is also fun, diverse, and uplifting! There are a lot of upbeat, empowering songs. People like to dance to them, and it was definitely a blast recording them.

The album is diverse because it crosses multiple genres including R&B, pop, blues, and reggae. It was difficult to select which songs to put on this debut album. Ultimately I wanted to make sure there was something in there for everybody. The order of the tracks matters to me because it tells a story and hopefully feels like you are being taken on a memorable and moving journey.

Tabi proudly holding her framed debut album

How autobiographical is the album, and why was it important to you to write the songs yourself?

This album is my baby! I know people use that term a lot in reference to personal projects, but I intentionally released it on my 35th birthday. At this age, many women, myself included, start to worry if they have not yet had a baby.

SMA presents challenges in every part of my life, but I am highly ambitious and set out to conquer my goals. I haven’t yet had a baby, so until then, this album is my baby. As an artist, it is my portfolio.

This album epitomises all that I have accomplished thus far; buying my own home, getting through college via financial aid and scholarships, having a successful full-time career that allows me to be financially independent, owning my own wheelchair accessible van, volunteering regularly, helping implement change for people with disabilities, writing and managing my music, managing my home health aides, being a motivational speaker, and being able to perform throughout New York City at cafés, bars, church, and schools.

As great as this is, it does cause alot of stress, sweat and tears! So I hope people enjoy the album and heed the message that faith and hard work have afforded me the life I have. This allows me to remain positive and to inspire myself and others.

Tabi smiling on stage, performing songs from her debut album entitled, ‘I Wrote Life’

Is important to you to inspire other disabled people who may have musical aspirations?

It is, especially since we are now at a time where there are so many groundbreaking opportunities. A few years ago, I saw many people with disabilities acting on Broadway, which took my breath away and really inspired me to continue doing what I’m doing. I would love to inspire, or better yet, collaborate with other musicians with disabilities.

During the bridge of my song keep rolling on I sing, “there’s so much left to change, more than we even think. More face in media, presence in arenas”.

Tabi, dressed head-to-toe in purple, holding a card displaying the hashtag #IWroteLife to promote her debut album

Have you faced any opposition, challenges and/or stigma on your journey to becoming a musician, due to your disability?

Surprisingly, the biggest challenge is sometimes getting onto the stage to perform! Most stages are not wheelchair accessible, so I have to be prepared for that. Another major challenge is having less live music venues to choose from because not all of them are wheelchair accessible.

Tabi performing live in NYC alongside her guitarist

How do you overcome these obstacles?

In the early days, I didn’t want that to be an issue or a dealbreaker when pitching to venues to book a show. So I would have my band members and friends lift me in my wheelchair on and off the stage. I have a powered wheelchair that weighs at least 300 pounds! So that was a lot to ask, and I am thankful for the support. This still happens sometimes, but I am now more confident about asking venues to consider investing in a ramp.

There are still the same challenges surrounding the inaccessibility of venues, both for the performers and attendees. I think this is just one of many accessibility issues that exists and for which we need to implement improvements.

You were the opening performer at the first ever Annual NYC Disability Pride Parade in 2015 to celebrate the ADA’s 25th anniversary. How did that make you feel?

That was such an amazing feeling! I had just started using my wheelchair again after having been stuck in bed for a few months due to ill health. So this experience was a huge comeback and it was an honor to be a part of this event. I have to reflect on this sometimes and remember how privileged I was to perform outside, in front of so many people, during the first parade specifically for people with disabilities.


I would like to thank the lovely Tabi for taking the time to answer my questions. Her brilliant debut album, ‘I Wrote Life’ is available to purchase and download NOW!

Follow Tabi on social media:

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Interview | Kat Pemberton

Image description: photograph of Kat Pemberton in her powered wheelchair.

“My life is so much more than my disability!”

Kat Pemberton is a successful Vlogger, disability activist and model for Zebedee Management.

The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.

Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.


Spinal Muscular Atrophy

1. Kat, please tell us about your disability and how it affects you.

I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.

I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.

SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.

When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.

I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.

Life as a disabled Model

2. How did you become a model and what does this mean to you, as a young disabled woman?

I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.

When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.

Zebedee Management

One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.

I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!

Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.

Campaigns

I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.

Image description: campaign photography, by Sophie Mayanne, for the #BehindTheScars project.

In February 2018, I got to work with photographer Sophie Mayanne on the Behind The Scars project.

I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.

Image description: campaign photo of Kat Pemberton. #BehindTheScars

I also participated in the amazing Portraits of Pride campaign for HSBC, who sponsored London and Birmingham Pride.

Image description: a collage of images depicting Kat’s experience with the #PortraitsOfPride campaign.

I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.

Image description: a portrait of Kat Pemberton, painted for the #PortraitsOfPride campaign.

Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.

Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.

It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.

YouTube Vlogger

3. Kat, could you please tell us about your Youtube channel?

Image description: Kat’s YouTube banner.

I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.

I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.

I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.

Image description: a collage of screenshots from Kat’s YouTube videos.

I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.

I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.

Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.

I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!

Disability Activist

4. You describe yourself as a disability activist. What are the issues that are most important to you?

I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?

I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!

I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!

I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with Fixers UK, where I spoke to sponsors about my film and promoting disability awareness.

Following that, I modelled for the BooHoo ‘All Girls’ campaign to promote diversity in society.

Image description: Kat Pemberton modelling for the Boohoo #AllGirls diversity campaign.

I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.

Image description: Kat speaking at the WoW festival.

I’d like to thank Kat Pemberton for taking the time to answer my questions.
Twitter, Facebook, Instagram, YouTube

Interview | Shane Burcaw

Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.

Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.

Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.


1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?

I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.

2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?

My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!

It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.

3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?

Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.

4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?

Both of my memoirs (Laughing at My Nightmare, 2014; Strangers Assume My Girlfriend Is My Nurse, 2019) are about funny experiences I’ve had, from my early school years into adulthood. Strangers is more about society’s flawed perceptions of disability. My children’s book (Not So Different, 2017) answers the most common questions that kids ask about my disability and my wheelchair.

5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?

Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”

I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!

6. Has your attitude to disability, your own in particular, changed over time?

Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.

7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.

Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.


I would like to thank Shane for taking the time answer my questions.

I hope you enjoyed reading this interview.


Twitter: @LAMNightmare

Website: Laughing At My Nightmare

YouTube: Squirmy and Grubs

Instagram: @shaneburcaw

Interview | Accessing University as a Disabled Student

My good friend Lucy recently graduated from Canterbury Christ Church University with a First class honours degree. Like me, 24 year-old Lucy who lives with her family in Kent, has a progressive form of muscular dystrophy.

Now that she’s free from study, I thought I’d grab her for a chat and ask a few questions about her university experience from the perspective of being a physically disabled student.

Perhaps the insight, information and advice offered here might be helpful to anyone out there with a disability who is applying to university or considering higher education.

Lucy with her carers and peers at university.

1. Hi Lucy, can you please describe your disability and how it affects you.

Hey! So, I have Congenital Muscular Dystrophy – Merosin Deficient, meaning I lack the merosin needed to knit the layers of my muscles together. Because of this, I get progressively weaker over time due to my muscles being unable to properly repair themselves.

This weakness means I can’t really do anything for myself without support from other people. It also makes daily habits difficult as I lack the strength to hold things and do things. A few examples might be that I find it difficult to feed myself as I find certain cutlery too heavy to lift, I can no longer read books unless they’re digital as I cannot hold them or turn pages, and I need regular hoisting for transfers and the bathroom.

Being a muscle defect, my organs and my lungs in particular are affected, meaning I have regular medication and ventilator intervention to aid my breathing. Lying down helps with this, as well as only being able to write/type lying down, which means I lie down most of the time.

2. Did your disability put off going to university?
And what, if any, concerns did you have prior to applying for university?

I knew it would be difficult to apply to university but I wouldn’t say my disability ever “put me off” of applying. I’ve been very lucky with my education in that my parents have always pushed for inclusion and for me to receive education befitting my abilities. I went to a mainstream primary school, a grammar school for my secondary education, and college after that. So applying for university, whilst scary, was the logical next step for me.

That’s not to say I didn’t have any concerns regarding how I would be able to access higher education with my disability. One of my main worries was that Uni is a very different environment from school in that the campus is a lot bigger! Having hoists and a portable bed so I can lie down is all well and good when it’s accessible but, what if I was timetabled for lectures in a different building to my equipment? It wouldn’t be possible to transfer every 5 minutes, so it took a while to negotiate a timetable solely in one place – it was tough but doable.

3. Could you please explain the application process and any challenges you faced?

The application process itself was exactly the same as if I were an ‘able-bodied’ student – I applied through UCAS and SFE (Student Finance England). However, perhaps most importantly for me, I also had to apply for extra DSA (Disabled Students Allowance) as well. It was the next steps that were a bit different…

After applying and being accepted, I began having regular meetings with the disability officer who would be supporting me during my time at Uni. The disability department at my university in particular was split into different fields: physical disabilities, learning disabilities, and mental health.

We discussed suitable timetabling, storage for my hoists and bed, even suitable places for my carers to chill out whilst I was in lectures. It was all sorted over the summer months before term was due to start.

I chose to live at home with my family throughout the duration of my course (2015-18) rather than on campus, so that was one less thing to organise.

4. What support did you receive and was it difficult to get this support in place?

I have my own team of personal carers, provided by an agency, who supported me whilst a student. In my case, this wasn’t something the university or disability officer organised or supported with.

The DSA I used mainly to pay for transport. I paid for a wheelchair-accessible taxi to take me to Uni or the library each day. The finance was also used to supply me with a MacBook and accompanying software such as Dragon Naturally Speaking and Claroread, as well as a printer and allowances for things like ink cartridges and paper.

I personally found the process of co-ordinating with my disability officer really straightforward at the beginning. She really listened to what my needs were and to the best of her abilities made sure everything was in place before I started my course. However, it was once I had enrolled that her involvement became less proactive. I think a major learning experience for me would be that I should have been more proactive myself in maintaining regular contact with her.

There are undoubtedly going to be a number of disabled students on the system at whichever university you attend. Therefore, I would say if you feel you need help or advice, don’t hesitate to ask! Because, when I did ask, she generally followed through. I only wish I’d asked for her help a lot more than I did.

5. How would you rate your university experience from a disability/inclusivity perspective?

Looking back on my experience as a disabled student, I’d rate my experience quite highly to be honest. There were certain things I found more difficult but generally I was included really well. I was able to lie down in lectures and participate fully, timetabling was set so I remained in one classroom for the entire day (something which my peers were VERY appreciative of, and made it known to me regularly). My equipment both on campus and at the library was easily accessible and staff were very helpful in its safe storage. All members of staff – from lecturers to security and housekeeping were continuously supportive and understanding of my needs.

6. In your opinion, what improvements need to be made to make higher education more accessible to disabled people?

As previously mentioned, I’ve been lucky in having the family support and confidence to access university, but I know how difficult it can be to have that confidence. I think one of the main reasons for this is because the process isn’t made clear or obvious. I mean, I had to work out my own process moving forward after my application. Whilst every process for establishing individual needs at Uni is going to be different, I think it’s important that the availability of such a step is highlighted.

I think UCAS and all university websites should, as a minimum, have a clear disability section outlining key contacts of enquiry. It’s far easier to make confident decisions if you’re fully informed and know that there’s going to be the support you need behind you.

I won’t rose tint – accessing higher education as a disabled student can be like having to find your own way in the dark! By no means is it a clear, easy-to-follow process.

7. What advice would you offer other disabled people considering university?

Having now completed university, I guess I’d advise others to try their best not to get anxious about the process. Yes, it’s daunting. Yes, it’s tough. But ultimately it is worth it.

As long as you’re clear and assertive about your needs, there will always be people around to support you. If you need support with campus or timetabling issues, ask the Uni. If you need help in class, ask your lecturers. If you need a pen, ask one of your peers! It all sounds really obvious and stupid but I can’t stress enough how important it is to just ask for help. But most importantly, be confident in yourself and just be yourself!

8. As a physically disabled individual, what do you consider to be the potential challenges around the social aspect of university life?

I think the social aspects of life in any context can be difficult for disabled people but at Uni it can be especially hard for some. I think one of the most important things to remember is that, actually, it’s not just you and it’s definitely not just disabled people that have this issue.

Many students relocate for university, sometimes half way across the country, sometimes half way across the world. So you’re all going to be in the same boat in that respect.
However, I’m not dismissing the fact that disabled people have it tougher than most. I think the most important thing is, once again, confidence. Many people lack the confidence to introduce themselves to disabled people for a multitude of different reasons – they don’t know what to say, they don’t know if you can respond, they don’t know if you want to be spoken to. All of these things can seriously put people off because they don’t want to embarrass themselves, or you for that matter, so it’s up to us to have the confidence that they lack.

Introduce yourself to people at Freshers’ Fayre, be an active member of your class and, if possible, join a society or two. Be the best version of yourself and people will be drawn to you.

*All images courtesy of Lucy Hudson.


I’d like to thank the lovely Lucy for putting up with my interrogation! 

She is in fact a brilliant poet, having co-authored the poetry anthology ‘Wheels of Motion’ which can be purchased here!

You can also follow Lucy on Twitter


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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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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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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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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

Disabled Actor

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.


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