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

Life, Stress & Coping Strategies

While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.

I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.

I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.

For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?

My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.


Here are a few of my coping mechanisms:

1. Music therapy ~

Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).

(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)

There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!

Here is a recent guest blog post I wrote for Mitch Coles, listing some of my top tunes!

2. Time with loved ones ~

Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.

He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…

3. Alone time ~

Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.

4. Get out the house ~

Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.

5. Avoid social media ~

It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.

This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.

Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.


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Turning 30…

Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.

I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.

For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!

Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).

Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!


Muscular Dystrophy ~ A Life-limiting Condition

Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).

In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.

Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).

Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.

Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!

And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 ~ thank’ya muchly!


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Top 10 Wheelchair Accessible Hotels in Tenerife

Guest Post

I was recently contacted by Orange Badge, who supply mobility aids, such as wheelchairs and mobility scooters, to holiday-goers in Tenerife. With expert knowledge, they offer free accessibility advice and information to ensure a stress-free stay in Tenerife.

About Orange Badge:

Established for over 20 years, the name comes from the original Orange Badge disability parking scheme in the UK.

Since 2003, they are the largest, most respected and professional mobility supplier on the island. Orange Badge provide unique products and free advice.

The Orange Badge team, who between them speak 7 languages, have lived and worked in Tenerife for over 60 years. they offer a unique ability to help you find mobility equipment and the most suitable places to spend your holiday.


Top 10 Hotels

1. Sheraton La Caleta Resort & Spa

Sheraton La Caleta Resort & Spa is a luxurious hotel in the picturesque Costa Adeje, just 200m from the beach. The terracotta coloured hotel boasts 284 spacious rooms with private terraces, 4 restaurants, 2 bars, a spa, fitness centre, and 3 pools.

2. Iberostar Grand Hotel Salome

Iberostar Grand Hotel Salome is a luxurious 5-star hotel. With stylish and modern rooms that have been recently refurbished, the Iberostar is an adult-only hotel that offers exciting cuisine, beautiful sea views, an infinity pool and spa, and even butler service for total relaxation.

3. TUI Sensimar Arona Gran & Spa

TUI Sensimar Arona Gran & Spa is just 800m to the buzzing centre of Los Cristianos and 800m to beautiful sandy beaches. This is a luxurious hotel with stunning views of the sea and harbour, 2 relaxing pools, and lively entertainment.

4. Gran Tacande Wellness & Relax

Gran Tacande Wellness & Relax is an elegant 5* hotel on the seafront in Costa Adeje. Dedicated to making your holiday as relaxing as possible, the hotel has 4 pools, a spa, restaurants, bars, lush interiors, and beautiful grounds for relaxing in the Tenerife sunshine.

5. Adrian Hoteles Roca Nivaria

Adrian Hoteles Roca Nivaria is centred around a family atmosphere. With fantastic sea views, 2 infinity pools, 3 restaurants, a lift that takes you down to the beach, and shuttle services to Playa de Fanabe and Costa Adeje, book this hotel for a relaxing and fun family holiday.

6. Hotel Villa Cortes

Inspired by Mexican hacienda design, Hotel Villa Cortes is located on the beach in Playa de las America’s golden mile, close to many shops, bars, and restaurants. Boasting 6 restaurants, a spa, a freshwater pool with waterfall and a saltwater pool, the hotel promises a fantastic holiday.

7. H10 Conquistador

H10 Conquistador is a contemporary, modern, and stylish hotel in Playa de las Americas. It benefits from 4 restaurants, 3 tropical pools, family entertainment, and access to both a shingle and sandy beach.

8. Hotel Paradise Park

Located in Los Cristianos, Hotel Paradise Park has stunning panoramic views of the town and the coast. It offers rooftop and grotto pools, beautiful gardens, and a shuttle bus service to the beach.

9. Adrián Hoteles Jardines De Nivaria

Located in Costa Adeje, Adrián Hoteles Jardines De Nivaria is a beachfront hotel with art deco interior, tropical gardens, and 2 lagoon pools. It has direct access to Playa Fanabe beach and benefits from 3 gourmet restaurants, a spa, and evening entertainment.

10. Mar y Sol Hotel

Just 400m from the sea promenade in Southwest Tenerife, Mar y Sol Hotel promises a lively and relaxing holiday with spacious apartments, 2 pools, restaurants, bars, and a gym.

Tricia Downing | Paraplegic, Sports Woman & Novelist

Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience

Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.

Tricia Downing

Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’.
Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit.
Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies.
She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.

Visit Tricia: www.triciadowning.com


Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…

Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”

“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”

“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”

“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”

“Will anyone actually love me if I have a disability?”

“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”

“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”

“I think,  so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”

“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”

“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”


Chance of Rain

Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.

‘Chance of Rain’ by Tricia Downing is now available to buy from Amazon

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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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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Interview | Life with my Assistance Dog

“Petworth has changed my life greatly…he has given me a reason to get up every morning.”

I recently had the pleasure of chatting with the lovely Harriet Butler about life with her beloved assistance dog, Petworth.

Harriet, 26 from Worcestershire, studied media and cultural studies at University and currently volunteers at KEMP hospice. Like me, she has a form of muscular dystrophy.

Here she explains all about the application process and why she wouldn’t be without her canine partner…


1. What is your disability and how does it affect you?

I have Duchenne muscular dystrophy. This form of muscular dystrophy predominately affects boys but in rare cases females like me can have the condition. Duchenne is a progressive muscle-wasting condition that affects every muscle in the body. I was diagnosed at the age of nine. When I was younger I was able to run and jump around but over time things became more difficult and eventually impossible. When I was twenty-two, I broke my ankle and now I am unable to weight-bear and so I rely on a wheelchair to get around.

2. What made you decide to get an assistance dog and what did the process involve?

Several years ago I visited the dog show ‘Crufts’ at the Birmingham NEC. Whilst I was there, I watched an assistance dog demonstration. I was blown away by what the dogs could do.

In June 2014, I had a spectacular fall and broke my ankle. Before my accident I could still walk short distances on the flat. I had surgery in which pins and plates were inserted. I had hoped I would be able to regain my mobility but it became apparent that this would be impossible. Once home and in a difficult place in my life, I applied to Canine Partners. They are a brilliant charity that provides assistance dogs to those with physical disabilities.

Once I had applied, I was invited to an assessment day at their centre in West Sussex. I met some incredible dogs and did some task work to see how a potential assistance dog could help me. I also had an Occupational Therapist come out to visit my home. She checked that my garden and home environment were suitable. I was then added to the waiting list and Canine Partners would start the process of finding me a suitable dog. They try to find a dog that fits in with your lifestyle and the tasks you need help with. For instance I required a tall dog to pass me items because I am quite high up in my electric wheelchair.

Eventually I got the much-anticipated call from advanced trainer Chrissie to say they had found me a potential dog. I was invited to meet Petworth and it really was love at first sight. We seemed to click straight away and I really liked how unusual he looked. Petworth is a curly coated retriever Labrador cross. He has extremely long legs and a lovely curly coat. We discussed the tasks I would like him to do. The following day, Chrissie phoned to check that I wanted to go ahead with Petworth. Of course, I said yes.

The final stage involved going on a two-week training course and learning how to work with Petworth. I have now had Petworth for over two years and I couldn’t be happier.

3. How does Petworth assist you and how has he changed your life?

Petworth can assist me in so many ways, providing me with a degree of independence away from carers. He picks things up when I drop them (I do this very often due to my reduced dexterity). He gets help when I need it; he goes and finds my Mum. He brings the post to me when it arrives. He opens and closes doors around the house and also pushes automatic door buttons when I’m out. He turns on and off the lights in my room and bathroom. He assists me with taking my coat/jumper off and shoes and socks. He fetches my phone for me if I leave it in a different room. He is able to open and close cupboards so at feeding time he fetches his bowl for me. He also helps me tidy up by putting his toys away in a box. When we go shopping he can help getting items off the shelf. Once we are finished shopping, Petworth can help me pay and gives my purse to the cashier.

Having just written down the things Petworth does for me, I’m quite amazed. He really loves to help me but it isn’t all about work, he still gets time to be a normal dog. We both enjoy going to the park or going on a long walk. One of my favourite things is teaching Petworth a new task; he is a very quick learner. As my condition is progressive I can train Petworth to do more tasks that will benefit me in the future.

Petworth has changed my life greatly. In many ways he has flipped it upside down. Before I had him I was too scared to leave my house. I was always worried I would drop my phone or keys. I always felt like all eyes were on my wheelchair and me. I didn’t have a social life and I became very isolated. Now I feel like a different person as Petworth gives me so much confidence. People are more interested in Petworth than my chair. He is a fab talking point and people love to ask me questions. I don’t have to rely so heavily on carers. Most importantly he has given me a reason to get up every morning. He looks after me and I look after him.

4. What, If any, are the challenges of having an assistance dog?

This probably sounds cheesy but I don’t think it is a challenge. Petworth really has enhanced my life and opened up many doors…literally!

The main hurdle we face is good old British weather – come rain or shine Petworth needs a walk. This means wrapping up warm, getting my waterproofs on and embracing whatever Mother Nature has to throw at us.

I was initially worried that I would struggle looking after a dog due to fatigue, but in reality Petworth gives me more energy by completing his tasks. I am responsible for exercising, grooming, feeding and playing. This has helped me maintain some muscle strength and it has given me a purpose and a sense of achievement.

5. What would be your advice for others who are considering getting an assistance dog?

Go for it! Having Petworth has completely changed my life and an assistance dog could do the same for you. I know some people think I’m too disabled or I’m not disabled enough but I still recommend applying. I would try to speak to somebody who already has an assistance dog to see what is involved and if it’s for you. The best advice I can give is be patient. It is not a quick process and the charity waiting lists are long at the moment, but it really is worth the wait.

*All images courtesy of Harriet Butler


I would like to thank Harriet for taking the time to answer my questions so thoroughly.

For more information about assistance dogs, visit the Canine Partners website.

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Life Update | Hospital Admissions & Disability

Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!

Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).

Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.

I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.


A Few Tips:

Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.

Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.

Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.


I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.

Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.

However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!

On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.

I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.

After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.


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