Featured

An Introduction

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

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

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

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


My Disability:

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

Interview | 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.

Please follow me on Twitter and Facebook

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.

Please follow me on Twitter and Facebook

Guest Blog | NewCaregiver

This guest blog comes to you courtesy of Harry Cline, who is the creator of NewCaregiver.org and author of the upcoming book, The A-Z Home Care Handbook: Health Management How-Tos for Senior Caregivers.

As a retired nursing home administrator, father of three, and caregiver to his ninety-year-old uncle, Harry knows how challenging and rewarding caregiving can be. He also understands that caregiving is often overwhelming for those just starting out.

He created his website and is writing his new book to offer new caregivers everywhere help and support.


The Best Technology For The Visually Impaired

Photo via Pixabay by Hans

With all the technological advances these days, it’s easier than ever to find ways to make everyday life run a little more smoothly when you’re living with a vision impairment. From various products that support braille to low-vision magnifiers, there are companies that provide several items that will help you be as comfortable as possible in your home.

Here are some of the best pieces of technology to aid you in everyday life:


Braille notetakers

Work in Word, Excel, and PowerPoint and view PDF documents using a notetaking application that utilizes braille.

Reading machines*

Scan printed material and have one of these machines read it to you. You control the speed of the speech and the volume, and have your choice of different models that have CD options and the ability to read through text by word, sentence, paragraph, or page and change the reading voice. The Poet Compact2 is a popular solution. It doesn’t even require a computer.

Braille label maker

If you have a vision impairment, it’s important to organize your home in a way that both makes sense to you and will help you stay safe and comfortable. One of the best ways to do this is to use a braille label maker to keep areas like the kitchen and pantry neat and easy to navigate. Label shelves, drawers, or individual items in several different areas of the home.

Magnification products

If you have issues with low vision, consider investing in a magnification product that will make it easier for you to read, watch television, and work on the computer. There are several different models and magnification strengths depending on your specific needs.

Braille money identifier

It can be difficult to handle paper money when you have a visual impairment, but there are several products on the market now to help sort bills and keep your cash safe, such as this braille model.

Braille compass

Getting around is made much easier by the use of canes and a braille compass, which can be of use when you’re out for a long walk or simply want to find your way around the city easily.

Special eyewear

According to the American Foundation for the Blind, there are now special eyeglasses for those living with low vision that digitally enhance the viewing field using a high-definition camera. This technology is mobile and hands-free, and works for both near and far vision.

While it never hurts to get some outside help for living comfortably with a visual impairment, technology has made it much easier to do so on your own.


Source material: organize your home and braille model


I would like to thank Harry Cline for taking the time to write this guest blog.

Interview | Jackie Hagan

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 | Scott Watkin: SeeAbility

36-year-old Scott Watkin, an eye care and vision development officer with the charity SeeAbility, is one of this years deserving recipients of the British Empire Medal.

Scott, who has learning disabilities and the eye condition keratoconus, is recognised for his tireless work in the learning disability community.

A dedicated ambassador, Scott began his career co-chairing the learning disability partnership board on the Isle of Wight. This led onto an influential role as co-national director for learning disabilities within the Department of Health. He also lectures at the University of Hertfordshire, focusing on eye care, vision and equal rights. However, he notes his work with SeeAbility as a major milestone.


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

I was born with Williams syndrome which is a learning disability. Apparently I am one in ten thousand! Some of my muscles can be quite weak and my coordination can be not great at times.

I went to a special school and teachers never really paid attention to me, and it meant I didn’t really get the grades I wanted to get. I was bullied too which made learning very hard.

It also means I am more likely to have vision problems and actually I was diagnosed with keratoconus which I’ve had two corneal graftoperations on. I have quite a difficult daily routine involving eye drops and contact lenses.

2. How does your learning disability and eye condition affect you, and how have you found working with a disability?

My learning disability only shows when I’m nervous or worried about something, otherwise I’m a very confident person. I just need a bit of support to do my job and I’ve been really lucky to be supported well at SeeAbility.

My vision varies, some days it’s ok some days really poor. But I’m always ready to work!

3. What adjustments have you and/or your employer had to make in order for you to do your job effectively?

If I don’t know a journey my manager will meet me in London and we will continue the journey together. I know my way from the IOW to London very well having made the trip many times.

If my vision is really poor, we put all my information on yellow paper in Arial 16pt font. This helps me to read it better.

When I first started working I had lots of support to make steps in my job. But for me it’s just being able to talk to someone when I need to, and that’s the case at SeeAbility. If I don’t need that then I just get on with my job and carry on!

4. How and why did you get involved with the charity SeeAbility?

I first met Paula Spinks-Chamberlain (Director of External Affairs) at the Department of Health. SeeAbility supported me through my keratoconus and then I did some work as an ambassador. After that I was offered a job!

5. Could you please explain the role you play within SeeAbility?

I’m an eye care and vision development officer and I make sure people with learning disabilities get good eye care. I travel around the country giving training sessions to people with learning disabilities and carers. I need to make sure we lobby government to make sure they understand that eye care for people with learning disabilities is really important.

People with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

6. You are also on the board of Learning Disability England. What are your aims and objectives in this capacity?

I try and make sure people with a learning disability have a voice. People with learning disabilities need the same access to services as everybody else.

It’s about setting the direction of learning disabilities in England. Lobbying government and challenging the social care cuts. I need to make sure we do what we say we are going to do.

7. Why is it so important to you to campaign for people with learning disabilities?

Firstly, people with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

Secondly, people with learning disabilities deserve to have their voice heard. We deserve the same opportunities as everyone else as we have so much to offer. We just need the chances to shine.

8. What do you think are the main issues that require attention and improvement?

We need to stop the social care cuts and get a good eye care pathway down for people with learning disabilities so they can get the right eye care!

We need good annual health checks.

And to make sure the government take people with learning disabilities seriously and listen to what they want. For example, most people with learning disabilities want to work, and we just need employers to give us chance so we can achieve what others can have a good life.

9. Congratulations on being awarded a British Empire Medal in the New Year 2018 Honours list. How does it make you feel to be recognised for your achievements?

I never thought I’d be recognised in this way, it’s a real big honour. I’m glad my work is being recognised nationally because it’s really important. It sends a message to all the eye care professionals that I work with, they need to know how important eye care for people with disabilities is.

10. Finally, what tips would you offer anyone like yourself with a similar disability, who is seeking employment?

Don’t stop trying to find employment. Don’t be afraid to say you have a learning disability and it’s ok to ask for reasonable adjustments. You will have so many positives to bring to any role and don’t forget that, you are actually very reliable, more than other people!


I’d like to thank Scott Watkin for taking the time to speak with me.

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

International Women’s Day 2018 (Belated)

Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.

It is held on 8th March, every year. Here are a few quotes that resonate with me…

What does International Women’s Day mean to you?


This post comes to you a little late since I spent Thursday 8th March in hospital having an operation – fun, fun!

I’m now on the mend and planning future blog posts. What topics would you like me to cover? If you have any ideas or suggestions, I would be grateful if you would leave a comment.


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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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Interview | ‘The Undateables’ Steve Carruthers

“It is a life-changing experience.        Embrace it!”


The Undateables is a Channel 4 TV show featuring people with a variety of disabilities, all of whom are looking to find love.

Steve Carruthers, who has Crouzon syndrome (a genetic condition affecting the shape of the face and head), was a participant on series two, back in 2013. Though romance did not blossom with his date, the experience gave him much needed confidence.

Following his appearance, Steve – now 36, from Manchester – soon met the love of his life Vicky, through social media. Vicky had in fact seen Steve on the show and decided to contact him.

The Undateables screened Steve’s romantic proposal and the couple later married in 2015.

1. Steve, why did you apply to The Undateables and, what reservations did you have?

I initially applied for a different show called ‘Beauty and the Beast: The Ugly Face of Prejudice’. As a result, I was approached to appear on series one of ‘The Undateables’, but declined as it had never been on and I didn’t get the gist of the show. After series one ended, I was approached again but this time it was by my good friend Adam Pearson, who worked with the team to find participants for the show. He convinced me to give it a chance as he said it would help me with my confidence and outlook as I had a negative outlook on life after the loss of two of my siblings. I was a bit reserved and concerned that after being on the show, more people would make fun of my appearance. But, in doing the show, my outlook changed to a positive one and allowed me to helped people.

2. How were you treated throughout the production process?

The team were incredibly nice and understanding. Everything was treated with care and compassion.

3. What response have you received following your appearances?

Like all things with TV, there are negative people who see disability as something to mock and joke about. But the positives outweighed the negatives in a huge way. People are so kind and understanding. I found that it [the show] helped educate people about disability. It also helps with how we perceive ourselves and how society perceives us to.

4. The show has been accused of being insensitive and exploitative. The title in particular is widely criticised. What do you think?

The show itself everything you see. It is exactly how dates are – you have moments of silence, awkwardness and moments of hope. The shows titles show cupid shooting the [prefix] ‘Un’ off, leaving the word ‘dateables’. The point is to prove we are all dateable, and that we [disabled people] have the same experiences on dates as everyone else does.

5. What would you say to anyone who is considering applying to the show?

My advice to anyone going on or applying for the show is go into it with an open mind. There will be those who will say [derogatory] things, but overall the positives more than outweigh the negatives. It is a life-changing experience. Embrace it! The positive message you’re putting out helps others as well as yourself. The impact the show’s had has given so many people confidence. Those who watch the show have gained so much more understanding of different disabilities too.


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

You can watch his original appearance on the show here.

Images courtesy of The Undateables and The Sun


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Wheelchair Services ♿

Following on from my last blog post, I’m happy to report that Friday’s appointment with wheelchair services (Wychbold, Droitwich) was surprisingly beneficial.

Admittedly, I had low expectations based on previous experiences. But the occupational therapist (OT) I met with was extremely helpful and conscientious.

I now have a long list of information and various options to consider.


I went prepared with some notes, outlining my needs.

Thus far, I have looked at various wheelchairs online and test drove the Quickie Salsa M2 Mini and the Quickie Jive M (both by Sunrise Medical). Sadly, neither of these chairs met my requirements.

The Salsa M2 Mini is an ideal size but not so great outdoors (compared to my current Quantum 600). The Jive M was just too big for my home.


Me in my current Quantum 600 powered wheelchair

Whilst at the appointment, I was shown the Invacare TDX. Before it was even measured, I could see it is far too big, more so than my current chair, and wouldn’t fit around my home.

So that’s one more crossed off the list!


Voucher vs NHS wheelchair?

The last time I approached wheelchair services was 10+ years ago. That appointment was brief and frankly a waste of time!

I was offered a voucher with a value of no more than a few hundred pounds. A lot of money you may think. But when you consider powered wheelchairs cost from £5000 upwards, (between £10-20k is more accurate), a few hundred quid doesn’t go far.

The only alternative to this was one, very basic, very inadequate NHS wheelchair – I suspect unsuitable for most people.

Thankfully since then, things seem to have improved greatly (around here, anyway).

My current options are:

– A voucher with a prescriptive value of approx £2000

– Accept one of the approved NHS chairs (none of which feature the rise function that I need)

– Accept a more compact mid-wheel drive (MWD) NHS chair for indoor use, and privately purchase a second wheelchair specifically for outdoor use (worth considering as I live rurally)

Right now I think my best bet is to take the voucher and choose my own wheelchair. Mainly because I do require both the rise and tilt functions. The NHS will only approve the latter.


What now?

– Attend NAIDEX (April 25-26th). I will be able to see many different wheelchairs and discuss my options with specialists. Trust me you need to see and try them before committing to anything. You can’t base a decision on images and information on a computer screen.

– Investigate options I had not previously heard of, including: Ottobock and the YOU-Q Luca by Sunrise Medical.

– Contact Sunrise Medical directly and ask them to visit my home with demo wheelchairs to view and test-drive.

– Ask Sunrise Medical for a list of reputable dealers.


Once again, I will keep you updated of any developments.

Thanks for reading!

Wheeling Through Life | A Brief History

From birth, I have lived with the rare condition Ullrich congenital muscular dystrophy.

It is a progressive, muscle-wasting condition caused by mutations in the COL6A1, COL6A2 and COL6A3 genes.

It is typically inherited in an autosomal recessive pattern (both parents are carriers of the mutated gene). However, in rare cases it can also be inherited in an autosomal dominant pattern (where only one parent has the affected mutated gene).



It frustrates me that so few people, medical professionals included, have heard of Ullrich congenital muscular dystrophy. In my experience, those who are familiar with muscular dystrophy tend to associate it with it Duchenne (the most well-known form).

Many people look at me now – a non-ambulant wheelchair user – and assume that I have always been this way (ie. unable to walk). This is not the case.

In order to raise awareness and familiarity of UCMD, here are a few photos of me growing up with this sadly unrecognised condition.


Above and below: My first wheelchair (manual). Prior to this I used what we, as a family, referred to a “buggy”. At this stage, I was able to walk short distances whilst wearing leg ‘splints’.

Below: In this photo I am around 11 years old. I loved this wheelchair (a manual, Quickie) as it was a sleek, black and purple design.

At age 10, I became unable to weight-bear. My muscles were simply unable to support my growing frame. It was therefore important to find a wheelchair that was comfortable enough to use all day long, whilst also looking half decent!

As you can see, the push handles on this chair were higher than average as all members of my family are tall. You wouldn’t think so, looking at me would you!

I always disliked the unusually high push handles (see above) as they stuck out above my head and were an aesthetic distraction.

Below: My next wheelchair – again a manual. I was unable to self-propel due to elbow contractures and muscle weakness.

Throughout my school years, I always used a manual wheelchair. This is one of the main reasons I hated school so much, since I was reliant on others to push me around. Wherever I was put, I stayed. It was incredibly frustrating.

Below: My Quantum F45 powered wheelchair (this model is no longer in production).

A relatively light-weight, rear-wheel drive with a narrow base, this chair served me well for many years.

This was in fact my second power chair. My first was a Jazzy Pride (front-wheel drive), which was great outdoors. Unfortunately I can’t find any photos to show you.

My Jazzy Pride wheelchair was purchased through public fundraising when I was 10-11 years old. At that time, there was just no way my parents could afford the cost of a powered wheelchair. Our local wheelchair services could not (or rather, would not) provide me with one.

Below: This is my current wheelchair – a Quantum 600, which I have had for almost 8 years. It is mid-wheel drive and VERY heavy!

I have to say – though it is a solid, sturdy chair – I wouldn’t replace it with the same make/model. Unlike my previous powered wheelchairs, it has let me down unexpectedly on various occasions and required quite a few pricey repairs!

It is rapidly falling to bits (literally) and most concerningly, the electrics are now failing. For this reason, I am currently on the lookout for a new chair.

These days, I primarily use a powered wheelchair rather than a manual chair, as it allows me greater independance and freedom of mobility. However, I do also own a Küschall Ultra-Light manual chair, mainly as a backup.

Me in my current Quantum 600 powered wheelchair

If you have found this blog post useful, I would be grateful if you could share to help spread awareness of Ullrich congenital muscular dystrophy.

Thank you!