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

Strictly Come Dancing 2018

Disability, Diversity & Representation

Following on from Paralympian Jonnie Peacock’s influential appearance on last year’s Strictly Come Dancing, the latest line-up includes Para-triathlete Lauren Steadman and acid attack victim Katie Piper. The former has no lower right arm, and the latter suffered significant facial disfigurement following a violent attack when she was only 24 years of age.

The inclusion of these two young women on such a high-profile BBC One talent show, with viewing figures in excess of 11 million, will no doubt play a big part in the promotion of positive views on disability and diversity, as well as encouraging body confidence.


Katie Piper – Acid attack victim and charity founder

35 year-old TV presenter, author, philanthropist and charity campaigner Katie Piper was left permanently scarred after a vicious acid attack in 2008. The former aspiring model has subsequently undergone over 60 necessary surgical procedures.

The industrial strength sulphuric acid that was thrown in Katie’s face has caused extreme damage and left her with sight, swallowing and breathing issues, requiring ongoing, invasive treatment.
The perpetrator was instructed to carry out the callous attack by an abusive former boyfriend whom Katie had met online.

Over the past decade, Katie has found admirable strength and persevered through the most trying of times. She bravely shared her story in two autobiographies and the 2010 BAFTA winning documentary, ‘Katie: My Beautiful Face’.
Katie has written four more self-help books, fronted several televised shows relating to body disfigurement, and most notably established The Katie Piper Foundation, to support fellow victims of acid attacks. She is also now happily married and has two young daughters.

Katie & Strictly Come Dancing

Prior to being paired with professional Strictly dance partner Gorka Marquez, Katie said, “there was a time not long ago that I wondered if I’d ever be glamorous again and now I know that is going to happen!”.

Katie Piper is all about embracing body confidence and celebrating diversity, whilst raising awareness of the consequences of acid attacks, which is a crime that is sadly on the increase. Her appearance on this hugely popular primetime BBC show will enable her to reach a wider audience and spread that message.

Piper is acknowledged to be the most anxious of this year’s celebrity contestants. Having really struggled to overcome the nerves during her first performance of a Waltz to Adele’s ‘when we were young’, Katie scored 17/40. Her confidence was knocked by negative feedback from the judges, particularly Craig Revel-Horwood who did not hold back.

Katie has since revealed, “it’s funny because like in the first week it did really affect me and it was silly because whenever I would wake up on Sunday at home it was like your 35-years-old and it’s an entertainment show, calm down.”

Katie and Gorka received their lowest score when they returned the following week with a Paso Doble. The choreography was intended to reflect the motto of the song to which they danced; ‘confident’ by Demi Lovato. However, Katie was visibly close to tears upon hearing the judges comments. While Darcy attempted to focus on the positive attitude with which Katie possessed, the others described her as “Stompy”, “plank-ish” and in need of improvement.

Nevertheless, the couple were supported by the viewing public and voted through to week three, and thankfully so, since their Foxtrot earned them 22 points – their highest score.

Katie says, “by week four I was in the groove, laughing and enjoying it and it was okay. You go in the green room afterwards and the [judges] are just normal, nice people.”

Sadly a Jive was to be Katie’s last dance on Strictly. Though disappointed to leave the competition relatively early, Piper admits though she overcame her nerves, insecurities and improved whilst on the show, she is not a natural dancer, and wouldn’t have wanted to be patronised or pitied.


Lauren Steadman – Paralympian

26 year-old Paralympian Lauren Steadman, originally from Peterborough, was born without a lower right arm. However, this has never prevented the determined sporting star from pursuing her dreams.

This Elite Para-triathlete is already a Double World Champion, Paralympic silver medallist (Rio 2016 – Women’s PT4) and six times European Champion.

Encouraged by her uncle who was himself a triathlete, she began competing in her local swimming team from age 11, representing Team GB. Two years later, Steadman took part in her first international competition in Denmark, as well as the 2008 Beijing Paralympic Games. Intent on pushing the boundaries of possibility even further, she switched sports, from swimming to the triathlon, after the London Paralympic Games in 2012.

Alongside her demanding athletics career, Lauren has pursued academics and achieved a first-class Psychology degree in 2014, followed by a Master’s in Business and Management.
Lauren recalls, “In one year I had taken all three titles – British, European and World Champion – for the first time, and graduated from university with first class honours. It really couldn’t get much better than that!”.

Lauren & Strictly Come Dancing

Lauren signed up to appear on the latest series of Strictly Come Dancing as she wanted to set herself a new challenge, learn another skill and test her “own levels of uncomfortableness”. When asked what she was most excited about she replied, “pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me”.

With no experience whatsoever, Steadman claims her friends and family would describe her amateur dancing style as that of a baby elephant!

The glitz and glamour of Strictly is indeed a stark contrast to her sporting life. Not only that, dance itself is a very different discipline to what she is used to as an athlete. Dancing requires fluidity, expression, emotion and creativity, rather than the rigidity and stern focus necessary for triathlon events.

Despite all the odds, Lauren and partner AJ Pritchard stepped out with an impressive Waltz in the opening week of the show, scoring 25/40 from the four judges. The couple dropped 3 points with their second dance; a Charleston, and were awarded 20/40 for their slightly awkward Cha Cha Cha in week three. However, they returned on top form the following Saturday with an elegant Quickstep, earning them 25 points.

Their latest performance marks a first in Strictly history – a Contemporary dance, newly categorized as the ‘couple’s choice’. It was a highly personal interpretation with choreography designed to represent Lauren’s personal journey, her defiance and disability. The emotional dance was awarded with a standing ovation from the studio audience and 24 points from the judges.

Lauren has chosen not to wear a prosthesis during her time on Strictly. Preferring that her disability remain visible, she is keen to break down barriers, challenge convention and encourage other disabled people by demonstrating how dance can be adapted to suit different bodies and abilities.
For Lauren, the rollercoaster Strictly journey continues…


This article was uploaded by Disability Horizons on 26/10/2018

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

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.

Please follow me on Twitter and Facebook

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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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 | Amberly Lago

True Grit and Grace: Turning Tragedy intoTriumph

Former athlete and professional dancer Amberly Lago suffered a horrific motorcycle accident in 2010 which severed her femoral artery and shattered her right leg almost beyond repair. Despite her debilitating, life changing injuries, Amberly has transformed her life and is now a fitness trainer and motivational speaker, inspiring thousands with her resilience and ability to thrive.  

In her remarkable memoir, ‘True Grit and Grace’, this Texas girl instills hope to keep moving forward by sharing the tools and strategies that have worked for her. The determination, defiance and gratitude she demonstrates encourages readers to find resilience in their own difficulties. By refusing to give up, Amberly has admirably commited herself to regaining her active lifestyle, thereby proving it is possible to hit rock bottom and still find the strength to get back up.


1. Amberly, could you please tell Disability Horizons readers how your disability affects you and how you continue to cope with ongoing, chronic pain?

Following my motorcycle accident in 2010, I was diagnosed with Chronic Regional Pain Syndrome. CRPS is known as “the suicide disease” because it causes constant chronic pain. It’s ranked highest on the pain scale and has no known cure. When I was first diagnosed, I was told I’d be permanently disabled and wheelchair-bound.

At first I lived in denial and pretended nothing was wrong. Behind my smile, I was dying inside from physical and emotional pain. Everything I read about CRPS left me feeling hopeless. Still, I continued moving forward, despite the feeling of a vice grip on my foot and battery acid through my veins. I tried every kind of treatment for my pain, including a spinal stimulator, nerve blocks, ketamine infusions, Eastern and Western medicine, and anything that claimed it could bring me relief.

It wasn’t until I accepted the fact that I had CRPS and what I call my “new normal” that I began to show myself the self-love and self-compassion I needed to start to feel better. I wish I could tell you I found some magic pill or movement that relieves my pain, but the truth is, every day is different, and so are my pain levels. What works some days doesn’t always work the next, so I just keep trying, and doing, and praying.

When I am in pain, I go through my list of helpful tools. There is no particular order.

I practice mindfulness, meaning I do whatever I can to stop thinking about and focusing on my pain. I surround myself with positive people. No more doggy downers, only puppy uppers!

I count my blessings and practice gratitude.

I give myself permission to rest on a flare day and remember that I am doing exactly what I need to do. I am recovering.

I eat an anti-inflammatory diet.

I am on a sleep schedule (and yes, this means that I have an alert on my phone that tells me when it’s bedtime).

I am still learning to meditate.

I breathe deep breaths.

I pray.

I do everything I can to be of service to others. When you focus on the well-being of others, your self-pity disappears as you improve the quality of someone else’s life.

Then I repeat. Instead of allowing my pain to make me bitter, I do my best to appreciate everything I have, no matter how big or small. I will focus on the good in my life and let that be my medicine.

2. You endured incredibly trying times prior to your motorcycle accident, including parental divorce and sexual abuse. How has maturity and resilience helped you since your accident?

I learned from a young age to “cowgirl up” because at the time, there was no alternative. Dwelling on why reality wasn’t prettier wouldn’t have done a thing for me. It would have crippled me then, preventing me from achieving everything I wanted to and crippled me years later when I was actually crippled, preventing me from choosing nothing less than recovery. As weird as it may be to say this, I believe the pain and isolation I felt in those difficult times as a child were an ironic blessing of sorts. When you know from an early age that you’re on your own and can rely only and entirely on yourself, it’s as liberating as it is sad. But if you can take the sadness and self-pity out of it, then what you’re left with is a liberating sense of freedom—and, when trauma strikes, you don’t waste any time looking for someone to bail you out.

3. How and why did you choose to ignore and defy the doctor who abruptly told you that you would never function normally within society, not walk again?

Call it my stubbornness or my love of a good challenge or being in complete denial, but I wanted, more than anything, to chase after my daughter like a mother should and be free to do the things that make my heart sing, like hiking and exercise. Just because my body was “broken” on the outside, I was still the determined athlete on the inside. I learned to truly listen to my body and to be the healthiest I could be, despite my circumstances. We may not get to control what happens to us, but we can control how we react to it. So, getting on with my life was a series of three steps up (to the degree that I could take steps) and six steps back, both physically and emotionally. Every one of my surgeries, that totaled 34, I viewed as bumps in the road. I couldn’t think of them as anything but that. If I had, I would have given up. And nothing, not even a doctor’s advice, could get me to do that. Although I love my doctors, I had to think for myself when it came to my own health and happiness.

4. Understandably, you experienced severe depression following your accident. What was the turning point for you?  And how do you find strength and energy to turn such despair into positivity?

Somewhere in between surgeries number 28 and 34, I mentally spiraled into a deep, dark depression. I could feel myself giving up and giving in to the pain, and in that moment, I thought about my beautiful children, my family, my friends, and my clients, and realized I had better make a decision. I could go down the road of despair or down the road of peace and happiness. I immediately threw myself into a place of gratitude for all I did have in my life. Every time a negative thought crept into my mind, I replaced it with something I was grateful for. I threw myself into physical therapy and stayed active with my fitness clientele. Even though I couldn’t physically train them at first, I could still create their exercise plans and coach them over the phone. Being of service really took me out of my despair and gave me a sense of purpose and a strong feeling of connection.

5. Complex Regional Pain Syndrome (CRPS) is also often referred to as “the suicide disease” due to the fact so many sufferers take their own lives. How did you overcome the odds and move forward in order to achieve your goals and live life to the fullest?

My heart sank the first time I learned I had what is known as the suicide disease. When I found out I had an incurable disease that would leave me in constant chronic pain, I defaulted to denial; it took me years to accept that I am a woman with a disability. It wasn’t until I completely accepted my disability that I could begin to heal—not only physically, but emotionally and spiritually as well. I focus on what I can do and don’t get caught up in past accomplishments. I celebrate small victories along the way, whether being able to walk up the stairs on my own or walk on the beach with my family. I only look back to see how far I have come. I connect to my higher power every day and pray. Instead of letting my chronic pain detour me from my endeavors, I use it as a tool to connect me with others going through challenges and am reminded that I am not alone on this journey.

6. Throughout the book, you discuss the need for hope, acceptance and gratitude — to be thankful for all you have rather than looking to the past and what you have lost. Do you feel this is the key to getting the most out of life?

At first I was so caught up in my past accomplishments that I couldn’t live fully in the present moment. I went from being a dancer, athlete, and fitness trainer to fighting just to stand upright for a few seconds at a time. I was so embarrassed of my scars and tried to pretend that nothing was wrong with me. Allowing others to see my scars crushed me. Slowly, however, my perspective changed and I took ownership of my story. I then viewed my scars as battles I had won. Instead of looking down at my leg in anguish, I looked at it as a blessing. I still had my legs. Once I embraced my imperfections and learned self-acceptance, I truly began to heal and be comfortable in my own skin.

Without the traumas and heartbreaks of life I wouldn’t be able to serve the way I do now. It’s not about circumstances but about what you decide to do with them. I focus on what I am grateful for and don’t leave any room for self-pity. I make my purpose bigger than my problems.

As Albert Einstein said, “There are only two ways to live your life. One is though nothing is a miracle. The other is though everything is a miracle”. I believe in miracles.

7. Your role as a wellness coach and motivational speaker involves supporting, inspiring and advising others. Why is this so important and how does helping other people through their difficulties benefit you personally?

I wanted more than ever to get back to my passion, which is working with people, but I did wonder who would want to train with me. I felt broken. I trained fitness competitors, boxers, and CHP officers for years—and then I found myself on crutches. I now needed my clients more than they needed me. I needed to get back to work. I needed to give my life purpose above and beyond trying to walk again. Purpose was what would save me mentally, psychologically, spiritually—and, for that matter, physically. Purpose was what would get me on my feet and, someday—as I prayed—running again. I did whatever I could to get myself stronger—and then came the miracle. Business began booming, and did so quickly because people saw me in the gym, in my wheelchair or on crutches, even pushing myself from station to station in a wheelchair. I became the trainer of encouragement who told people, Yes you can! and that was how I trained them. Speaking to groups of people, whether a gathering of youth or  business professionals, about overcoming obstacles is a way of connecting, and when people connect, magic happens. I believe we need to lift others up to be better ourselves.

8. What do you hope readers will take away from reading your book?

What I have learned in life is a series of choices we make regardless of our circumstances. I could either make the choice to give up and let my life be determined by my circumstances, or fight to create something positive out of my situation. My choice is to notice the gifts life offers, which are particularly plentiful when you look for them. I believe in seeing the good in every situation and learning something from it.

I believe we can have the life we have always imagined, even if our circumstances have narrowed our possibilities. My sincere wish is that my story will help each reader claim their own power and belief in themselves and their dreams, and find their own resilience to move forward and choose a life filled with laughter and love, even when things don’t go as planned. We can’t choose what life throws our way, but we can choose to be happy and live a full life, despite our circumstances. Through our trials, we can embrace our challenges, connect to our innermost resilience, and change our perspective on life. We are all strong, but together we are unstoppable!


I’d like to thank Amberly Lago for taking the time to answer my questions so considerately.

Please visit her website to learn more about her life and work as a motivational speaker.

TRUE GRIT AND GRACE: Turning Tragedy Into Triumph by Amberly Lago (Morgan James Publishing; April 17, 2018) – Available to buy now from Amazon.

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Interview | Jackie Hagan

Disabled Poet and Performer

Award winning poet and performer Jackie Hagan’s latest show, ‘This is Not a Safe Space’, explores the impact of benefit cuts on disabled peopled and those living on the margins of society. The creative mix of poetry, puppetry, stand-up comedy and audience participation draws on first-person interviews with 80 working-class people. With an emphasis on class, mental health and disability, Hagan celebrates the weird and wonky lives of those excluded from the mainstream.

Jackie Hagan is herself a queer, bipolar amputee, raised on a council estate. Her work seeks to challenge the ways in which current society relentlessly stereotypes working-class, disabled individuals.

Following on from her previous success with the solo show ‘Some People Have Too Many Legs’ and her play ‘Cosmic Scallies’, this theatre maker once again intertwines spiky humour and quirky expression, resulting in a passionate, provocative and affecting production.


1. Jackie, could you please tell Disability Horizons readers about your disability and how it has affected you and your career?

In summer 2013 I suddenly had my leg amputated [following a series of blood clots and infections]. When I left the hospital they gave me a list of things to avoid, one of them was falling over. I toured a show that year called ‘Some People Have Too Many Legs’, which won some awards.

I had been writing and performing for some time and I had always been a disabled performer – I am partially sighted, have bipolar disorder and a life limiting autoimmune disease. But, having one leg is something people can get their heads around a lot better, people like something they can see. And so it attracted a lot of attention.

As such, when people invite me to diversity events to talk about the leg I often open with a leg gag and then go on to talk about invisible disabilities or class.

2. How and why did you become a poet and performer?

When my Mum was 16 she moved from the thrill and glitter of Liverpool to an isolated new town to have me and my brother. As such, she herself became a disco, she became thrill and glitter. How else are you meant to cope? It meant I grew up to be unafraid to speak my mind in the odd way i found natural. I wasn’t ever encouraged to toe the line or be normal.


3. How does your class, background and disability influence your work?

It means I’ve always got a cob on and I’ve got loads to say that doesn’t often get said. I’ve got council estate bones and they rattle when someone slags off a young lad for dealing or looting or having a big massive telly. I understand why this stuff happens. I’m not saying we’re saints: I’m not an idiot, but I’m closer to the action, I can talk in a measured way about the real reasons. I can give you stories and images that aren’t exaggerated or underplayed. I know what I’m on about.

Obviously it also means I come up against a tonne of prejudice and moments where people tilt their head to one side and use that sing song lilt to the voice “aw, are you in a wheelchair?” etc. It’s all total bollocks and the most satisfying way to show people is by being awesome.

4. Why did you decide to write this show, and why now?

Disabled people and those on benefits are represented in the media one dimensionally. Benefits claimants are shown as sinners: [the TV show] Benefits Street depicts us as if we’re stupid and should just try harder. Disabled people on the other hand are represented as saints, super-humans and paralympians. Real people just aren’t like that.

5. What is the meaning of the title of your new show?

I asked one of the lads I interviewed, “where do you feel the safest?”                 He thought for ages and eventually he said, “in my imagination”.

The government has messed up, massively. People are committing suicide and losing their homes. We’re obviously not safe. The new generation of kids have no security in their future, never mind jobs and homes. They’ve got climate change to worry about! Of course they are obsessed with safety, of course they need to create safe spaces.

People might be used to my old work where I would make hard topics fluffy and palatable. But in this show I need to give it to people straight. That doesn’t mean it’s unrelenting bleakness – no one can take that in, and audiences don’t deserve to have to put up with that. I know how to keep an audience with me. There’s lots of comedy and tenderness in the show, but i also know how to give an audience realities that need to be passed on. We desperately need people to empathise.

We are not safe. It is not fair. The world is not a safe space. The show is not a fairytale.

6. It celebrates and puts forth the lives and experiences of a section of society often misrepresented or ignored entirely by the mainstream. Why do you think that is?

If you [society] ‘other’ us, then you can feel less empathy and understanding. If you lack empathy, it gives people a free ride, it makes the problem go away, because it means we don’t matter.

7. Based on 80 interviews, your show intertwines poetry, DIY puppetry and stand-up comedy. That’s quite an eclectic mix! How do you begin to plan and produce such an original and engaging piece?

Humans don’t think in linear stories, we think in snippets and recurring images. It makes absolute sense to me to collect voices and stories and for me to keep on writing and writing. I then siphon it all down into central questions that I want the audience to think about, and eventually get right down into the essence which is the hour of the show.

In real talk that means A1 flipchart paper, post it notes, about a thousand gallons of tea and one amazing sound producer (Dave James who sat in a room and listened to 16 hours of interviews with me several times). I eat when I make stuff and put on about two stone. But I’d rather be a fat writer than frustrated and at my ideal weight!

8. What do you hope audiences will take away from the show?

  1. One person’s trying doesn’t look like your own.
  2. You don’t have to feel guilty for what you have. It’ll get in the way of you wanting to help.
  3. Classism is constant and as abhorrent as racism, sexism and homophobia! Learn to recognise it.


I’d like to thank Jackie Hagan for taking the time to speak with me.

My interview with Jackie was originally published by Disability Horizons, for whom I am a frequent contributor.


Connect with Jackie Hagan on Twitter and visit her website for news and more information.

Interview | YouTuber Shelby Lynch

20 year-old Shelby Lynch is an up-and-coming YouTuber from England, who happens to have a muscle-wasting condition similar to myself.

She was recently kind enough to chat with me about her disability, life as a YouTuber and her involvement with the Missguided #KEEPONBEINGYOU campaign.


1. Could you please tell us about your disability and how it affects you?

My disability is called SMA (Spinal Muscular Atrophy). This causes my muscles to become weaker over time. I have a curve in my spine (scoliosis) and am unable to walk, so I use a powered wheelchair to get around. I also need to use a ventilator 24/7 to help me breathe.

2. What have you found to be the biggest challenges of living with your disability?

The biggest challenge of having a disability is having to rely on other people to do things for you. My daily life is affected – I need help with simple things like getting around, eating and personal care. I’d love to be able to do my own hair and makeup.

Also, not having as much independence as someone my age should. Independance for me is key.

3. What, if any, do you feel are the positives to having a disability?

There are a lot of perks! For me, the biggest positive that comes with having a disability is getting to skip the queue for certain things. Sometimes I can get free access to certain places too. But then others do take the piss and charge disabled people more than they would an able-bodied person.

4. Can you please explain why you decided to become a Youtuber?

I wouldn’t say I’m a successful YouTuber but if I’m helping people in a certain way then that’s cool. I started watching YouTube around four years ago. I thought it looked really fun so I decided to make a channel too. On my channel I talk about fashion, beauty, lifestyle and my disability.

Really, I just want to have fun with it to be honest. I want to show people that I’m just a regular 20 year old who enjoys doing what other people like to do. Whether it’s going to concerts or hanging out with friends.

5. Do you consider yourself to be an inspiration?

No, I don’t consider myself to be an inspiration unless I have done something to impact people. People usually call me an inspiration just because I’m disabled but to me, that’s not right.

6. Can you talk about your involvement with the Missguided campaign, and what it means to you?

I saw their campaign on Instagram and really liked the fact they were showing different types of people. So, I took a picture of myself wearing one of their jumpers, and used the hashtag #KEEPONBEINGYOU.

Only a couple of hours later they had reposted my picture. It was so overwhelming receiving so many nice comments from people I didn’t even know. Then somebody from Missguided contacted me, offering to send some clothes, and asking if I would like do a mini photo shoot and video for their campaign which felt like a dream!

Working with them was absolutely incredible! When they asked me if I would join their campaign I was over the moon. It was such a great start to the week. I was a bit nervous as I have never done anything like this before.

But Missguided is a brand that I actually love. And I feel like their clothes are different to any other fashion retailer. The clothes make me feel confident and cool, so getting to work with them was a dream come true.

In addition, it’s great that they aren’t afraid to break barriers by showing some diversity in their campaign. This is something I personally respect so much.

In my caption for my picture I spoke about how disabled people aren’t often seen as pretty or sexy because of their disability, and that’s not the case. We should feel empowered no matter what.

– “Keep On Being You means to be confident in your own skin, and not letting anyone in life tell you that you can’t do anything.”

I hope they ask me to work with them again as it was so much fun and they are certainly leading the way in showing diversity as a fashion brand.

Find out more about Shelby’s involvement with the Missguided #KEEPONBEINGYOU campaign here.


Follow Shelby:
Twitter

Instagram

Youtube channel

Pinterest

Blog


          I’d like to thank Shelby for taking the time to speak with me!