Get To Know Me | Interviewed by Wheelescapades

I recently collaborated with fellow disability and lifestyle blogger Gemma Orton, aka Wheelescapades, on a ‘20 Questions‘ blog post.

We initially got chatting on social media and found we had a few things in common ~ We’re both arty/crafty types, we have a mutual love for all things Disney, and we are both wheelchair users. Gemma has Spinal Muscular Atrophy Type 2 (SMA2), while I have Ullrich congenital muscular dystrophy.

To get to know each other even better, we gave each other free rein to ask 20 personal questions!

Here you can find my previous post, in which I interview Gemma.


And below are my answers to Gemma’s 20 questions…

1. What made you decide to write a blog?

I had been thinking about it for a long time, though it took me several months to begin. I wanted to do something productive and worthwhile but didn’t think anyone would care or be interested in what I have to say.
They say you should write what you know. I have been disabled since birth and so consider this my expert subject. However, disability isn’t a particularly popular or fashionable topic to blog about. I knew it would be a challenge and it has been. I do feel like I’m constantly playing catch-up and at times I wonder if it’s worth the time and effort. But when I receive positive responses from complete strangers, I am reminded why I’m doing it.

2. What do you want your blog to achieve?

I want to raise awareness of muscular dystrophy, particularly Ullrich congenital muscular dystrophy which is the rare and little-known form that I have. I want to share my thoughts and experiences, having lived my whole life as a physically disabled individual, in the hope that it may in some way help others.

3. What is the most difficult thing for you about having a disability?

Blimey, I could write a list! There are many challenges and frustrations. My condition is progressive and so the difficulties become greater with age. I think perhaps, for me, the most difficult thing about living with Ullrich congenital muscular dystrophy, is the limitations it inflicts. I am limited physically – I cannot run, dance, walk or even weight-bear. Just to be able to stand and support my own weight would make a world of difference! I am life-limited! Yes, UCMD is a life-limiting condition. I will not grow old or see my new baby nephew become an adult. Furthermore, my quality of life is limited. To put it briefly, when I am ill I’m REALLY ill. I have spent much time in hospital with respiratory related issues including repeated bouts of pneumonia, pleurisy, and a collapsed lung. I have literally lost months of my life to UCMD – housebound, unable to eat and reliant on non-invasive ventilation.

4. What is the biggest positive about having a disability?

The positives are much more light-hearted! Concessions, being able to skip to the front of the queue and designated parking (although disabled bays are often occupied by sports cars lacking a blue badge!)

5. If you could only eat one food for the rest of your life what would it be?

Hmm, tricky! I do like variety. I guess I’d have to choose… mash potato?! That way I could always mix it up by adding herbs from the garden (or is that cheating??)

6. An apocalypse is imminent, you have 30 minutes to prepare, what 3 items do you pack?

Well, I guess if the apocalypse is coming then it doesn’t really matter as we’re all doomed anyway?! But, I think I would still pack a bottle of Lucozade (I live on it! Purely for the energy boost), my dog and my family!

7. When making tea would you pour the milk or water in first?

Water!

8. What is your favourite way to relax?

I like to shut myself away, snuggle up in bed or on the sofa, and listen to music or watch a good film.

9. If you could interview any human, dead or alive, who would it be and what would you ask?

Wow, I really don’t know. God! (who I don’t believe in – what a cop-out) He has a lot to answer for.

10. What would be your dream job?

I’m one of those people who never knew what they wanted to do. I’ve never been career focused or academically ambitious. All I ever wanted was to have kids! But, if I could be absolutely anything, I think I’d be a dancer. I’ve always loved everything about dance. And yes, I’m a huge Strictly fan!

11. You’ve just won 10 million pounds (congratulations!), what 3 things would you do with the money?

Sort my family out – erase any debts and buy them homes, cars and whatever else they might need or want. Make sure my closest friends are comfortable! Buy a holiday home(s). And finally, a home for myself, FULLY adapted!

12. Where in the world would you most like to visit and why?

Australia. For as long as I can remember I have always wanted to visit Australia. The snakes are a little off-putting but still, that’s where I’d head to first. Closely followed by America. I’d absolutely love to do a road trip – Route 66!

13. What one thing would you change about yourself?

Only one?! Again, I could write a list. Buy I’d have to say my body. It doesn’t work too well and I’m flipping uncomfortable in it!

14. If you could play any part in a film, past or future, real or fiction, who would you be?

Men get all the really great roles! So, if I were male I think I’d play the Joker in The Dark Knight. How much fun would that be! Since I’m not a man, I’d play… I don’t know!! Maybe one of the sisters in A League of Their Own (1992) or Uma Thurman’s roles in either Pulp Fiction or Kill Bill.

15. If there was a pill that would freeze you at your current age and you could live forever as you are now, would you take it? And why?

Nope, definitely not. I wouldn’t want to live forever. It would get pretty boring after a while! Plus outliving all my family and friends would be hell.

16. If you could trade lives with one person for an entire day who would it be and why?

My brother. He has the life I’ve always wanted. He is physically fit, handsome, funny, charming, popular, successful and he has a lovely wife, baby and home. Of course I don’t resent him for it and I want nothing more than for him to be healthy, happy and fulfilled. But to experience his life for just one day would be bliss. I’d never ask for anything else.

17. If you could time travel, where would you go?

Good question. There are so many periods throughout history that I’d like to visit. But it would be great to go back around 50 years, when my parents were kids and my grandparents were young. I never knew my maternal granddad who died when I was a baby. So I’d especially love to meet him.

18. If you were made Queen and allowed to pass one new law, what would it be, and why?

Argh, the pressure! I have no good answer to this. So I think I’ll just say longer sentences and harsher punishments for serious crimes. There really is no deterrent in this country.

19. What personal trait has gotten you in the most trouble?

Voicing my opinion and failing to filter! Over the years I have become more outspoken and more impassioned about certain issues. I tend to over-analyse and question everything. Oh and I am rather stubborn. If I believe something in something, I won’t budge.

20. As a child, what did you wish to become when you grew up?

Just happy I guess. As I said before, I never had a particular job or career in mind. I’ve considered various options and ideas over the years. But all I ever really wanted was a home and a family of my own. That’s it. Not much to ask, eh?

I don’t think it is.


I really hope you enjoyed this collaboration with Wheelescapades. Let me know in the comments.

I’d also love to hear from you and find out how you would answer these questions!


To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

Getting to know… Wheelescapades | 20 Questions

One thing I love about being a disability blogger is the fact that I am able to interact with other like-minded bloggers.

I recently got chatting with the lovely Gemma over at Wheelescapades. We quickly realised we have a fair bit in common: we’ve both studied art, we have a mutual love for all things Disney, and we both have muscular dystrophy, albeit different forms.

So, we thought it would be fun to collaborate on a blog post. To learn even more about each other, we decided to ask 20 juicy questions. You can find my answers to Gemma’s questions over at her blog!


Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

I wouldn’t say I’m the ambitious type. There’s lots of things I’d like to see and do as you’ll find out throughout my answers. But when it comes down to it I’d just like to be content and happy. For my friends and family to be too. It’s the simple things that make life.

2. What is your dream job?

I love anything arty and creative. I’m too indecisive to give you one dream job title, but I’d like to be in an atmosphere where I am surrounded by creativity. I enjoy making things, drawing, textiles and I’m going to say I would like to work in theatre design, costumes and props.

3. What do you most regret?

I don’t think I have any major regrets. That’s no way to live.

I do often regret not ordering dessert when I’m out with friends and theirs arrives leaving me sugar craved.

4. If you could live anywhere in the world, where would it be and why?

Although there are so many places I’d love to visit, I think I’m perfectly happy living where I am. I love England, it’s history, its heritage, the traditions, and yes the weather! I know it’s something everyone moans about, I’m guilty of that too. I know it can be unpredictable and awfully grey at times, but I like the differing atmospheres. We are lucky enough to get sun, snow and thunderstorms, but nothing too extreme or scary.

On a smaller scale I like the area I live in, Norfolk. I’m in a small town, not far from the city, the sea and the countryside. Norwich is a diverse city of art, architecture and music. I can also easily get to London.

5. Dream dinner party guests: if you could invite any 5 people, alive or dead, who would you choose and why?

Alexander McQueen, Tim Burton, Andy Warhol, Stephen Hawkins, and Banksy. All creative, passionate and intelligent minds that know what they are/were and do their thing with conviction. Need I say more.

6. If you could visit any time period throughout history, when would it be and why?

Well I don’t think wheelchair access is going to be very reliable however far I travel back. As a mega Downton Abbey fan I’d love to dress 20’s style and attend one of Lady Mary’s Luncheons.

I’d also love to go back and spy on myself as a child, my Mum as a child or my grandparents.

7. If a genie were to grant you any 3 wishes, what would you wish for?

This is the one I’ve been struggling with (I take these questions seriously!). Do I go for the big things: world peace, a cure for SMA, an end to poverty?? Or the smaller stuff like a fully accessible luxurious house, enough money to help friends and family, to have a talent that can make me a living?? Basically it depends how good this genie is and what the rules are. There are always rules and consequences to these things! Maybe I shouldn’t rub the lamp…

8. What is your ideal holiday?

My dream is to visit Florence, Italy. The complications, discomfort and fear of losing or breaking my wheelchair has meant that I haven’t flown since I was a child.

I’m not a ‘by the pool girl’, although I do love a spa! My ideal holiday would involve seeing the sights, being around the locals, visiting little cafes, museums and galleries, plus a wheel along a river and cocktails on a roof – With warm but not sweltering weather. Don’t ask me where this destination is, although I’m open to suggestions.

9. If you were Prime Minister for one day, what would you do?

Cancel Brexit. Can I say that? Shouldn’t we have learned by 2017 a united world is a better world.

I think I might need longer than a day!

10. Who or what inspires you most in life?

I can be inspired by the simplest things. I wouldn’t say that one event or person has inspired me to be something. It can be a book I’ve read, a chat with a friend or a film I’ve seen. All these things can inspire thoughts, make me want to be a certain way or do a certain thing. In fact, I am often inspired just people watching. Seeing how people react can trigger a thought or idea.

11. Could you please share 3 interesting facts about yourself?

  • I won first prize in a national textile design competition. My prize was to visit Première Vision in Paris.
  • I eat almost everything with a fork, including Wotsits.
  • I haven’t seen my natural hair colour since I was 16. I’ve had almost every colour, including blue and red at the same time. I’m now 32.

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

13. If you could spend one day in someone else’s shoes, who would it be and why?

Can I say my cat even though they don’t wear shoes?

I’d lay around on the windowsill, worry free, watching the day go by. Maybe take a little nap and have some chewy treats. Get “cooed” and massaged on the head if I’m good.

14. What is your biggest fear?

Spiders! I really do hate them. And unfortunately most of my PA’s do too. I didn’t think of that question when I interviewed did I?! – Job title ‘spider catcher’!

Umm on a more serious note… everyone’s fear: losing family and friends.

Disability-wise: losing strength, the independence I have and communication.

15. What annoys you most?

Although you haven’t read question 18 yet, you can refer to it here.

I think moaners annoy me the most (yes I know I moan too, we all do). You know those people that make a big deal of nothing. I know everybody is different, we all have our issues and our weaknesses. But people, stop sweating the small stuff and appreciate what you’ve got. Enjoy the washing up! Appreciate the walk to the shop for milk to make yourself a brew. Yes you’ll get colds, and they are irritating, but the likelihood is you’ll be over it in a few days.

16. What makes you happy?

Being around friends and family, my cats, a day in the sunshine and drinking tea. Netflix days, ache-free days, a facial at the spa, a good book, Seeing the end result of my craft project, festivals and the outdoors too!

17. If your life was a novel, what would the title be?

‘Wheelescapades’ – the title of my blog, as that took me long enough to think up. I’m no good at these things.

18. What is your disability, and what frustrates you most about it?

I have SMA 2 (Spinal Muscular Atrophy Type 2).

I think it’s probably the small things that frustrate me the most. The little day-to-day things that most people take for granted. Yes I’d love to travel the world problem free and have an amazing job without limitations. But it’s not just me, and my disability that doesn’t get that.

What I’d like is to be home alone (with at least 7 cats), make myself a brew, switch on the TV, do all the crafting I want and get up for a wee when required! I’d love to fall into bed exhausted (without connecting my feed and breathing machine), sleep comfortably and uninterrupted and meet a friend for breakfast at the drop of a hat. I’d even be up for doing the washing up!

Also I’d quite like to just have a cold without wondering if/when it will put me in hospital.

19. In theory, if a magical cure were available, would you want it or not?

Okay, I know I’m probably supposed to say no here, as someone who is trying to change people’s perception of disability, blah blah… But yes, I would take that cure. I wouldn’t change my past life for anything. If I could keep the knowledge I have, the friends and family I’ve got and the experiences I’ve been through, then yes, give me that cure!

20. Why did you become a blogger?

I get into some awkward, funny and difficult situations mainly due to my disability. I also get different experiences and treatment with/from people because I am a wheelchair user. My friends and I would always joke about this; the good and the bad, as a way of coping I guess. Sometimes you have to laugh or you’ll go crazy. Often saying “if only people could hear us” or “I should write a book of all this drama”. Well I guess blogging is my book of tales.

I also wanted a serious side to the blog. Not many websites give you the gritty details of a venue’s (in)accessibility. Yes, they are starting to declare themselves ‘wheelchair accessible’ or claim to have an ‘accessible toilet’. Bbut accessible can mean so many different things. Just getting through the entrance doesn’t make a venue accessible. I wanted to chart good and bad access and to get people to look at it more.


I’d like to thank Gemma aka Wheelescapades for taking the time to answer my questions, and for being so candid!

I’d also love to hear from you! How would you answer my 20 questions?? Please leave a comment.


To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

 

Interview | Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.


Janine Shepherd: a broken body is not a broken person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person. It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics. Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.


Janine, please tell Disability Horizons readers about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.


I would like to sincerely thank the wonderful Janine Shepherd for speaking with me.

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Interview | Matt “Hambo” Hampson

Parallel London 2017

Here is my interview with Matt Hampson for Disability Horizons


With less than a month to go before the return of Parallel London (an all inclusive fun run and festival), I spoke to ambassador Matt Hampson about his involvement, and why the event is so important to him.

Matt “Hambo” Hampson is a former England Rugby Union prop who, at the age of 20, was paralysed in a near-fatal routine scrum session. Despite having severed his spinal cord in the accident (which took place twelve years ago in Northampton) Matt is now busier than ever and living life to the full as a C4/5 tetraplegic.

In 2011, Matt decided to establish a charitable foundation in his name, to inspire and support others who have suffered similar catastrophic sports injuries.

A mentor, fund-raiser, columnist, award-winning author, rugby coach, patron and ambassador; Matt truly epitomises the foundation’s ethos – ‘Get Busy Living’.

Sport, Injury & Disability

1. Hi Matt, would you please tell Disability Horizons readers a little about your sporting background and your subsequent disability?

I had my accident back in 2005 playing for the England Under 21s. I suffered a dislocated neck in a scrummaging accident, and had to be resuscitated on the pitch by the referee (and former paramedic) that day Tony Spreadbury.

My life obviously changed forever. One minute I was a young, fit sportsman and the next I was paralysed from the neck down. It was pretty tough to deal with. But it’s made me the person I am today and I think it happened for a reason. And that was to set up the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport.

2. How did you adapt to no longer being able to participate in sport as you had previously?

It was quite difficult but I think I tried to channel my energy into something productive, which was to try and focus on something that I could do rather than what I can’t. So now I do my motivational speeches, I see beneficiaries and I try to use my profile to influence and help other people in similar situations to the one I found myself in twelve years ago.

Charity

3. Can you tell us about the Matt Hampson Foundation – how and why did you set it up?

I set the foundation up because when I was in hospital I felt there wasn’t enough support out there for people in the same situation as myself. I felt quite isolated. I think the Matt Hampson Foundation aims to get individuals and families together and show them that there is life after serious injury through sport. It also tries to motivate them to ultimately ‘get busy living’ (an ethos inspired by Matt’s favourite film, The Shawshank Redemption).

4. ‘Get busy living’ is the ethos of the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport. How do you achieve this?

We try to show people there is a life beyond their injury and that you can live a great and fulfilled life even with a catastrophic injury. Everyone has X amount of time on this planet, so why not enjoy it.

So yeah, we try and use ‘Get busy living’ as the sort of ethos around the foundation.

Disabled People & Sport

5. What are your thoughts on involving disabled people in sport?

I think after the Paralympics in 2012, it changed the world of disabled sport forever. I think people started looking at disabled sports people as proper sports men and women rather than feeling sorry for them, and almost letting them participate as a sort of afterthought and a token gesture. I think the Paralympics in London really showed that and put them on a level playing field with able-bodied athletes.

Parallel London Ambassador

6. How and why did you become an ambassador for Parallel London?

It’s to put people on a level playing field, whatever their disability – whether you’re able-bodied, in a wheelchair, young or old – anyone can participate in Parallel London.

I think it’s so, so important to know that you can do things and be alongside disabled people, able-bodied people and all be on a level playing field.

7. What does Parallel London mean to you personally, and how does it promote disability and diversity within sport?

Parallel London to me means inclusivity. So basically, trying to get everybody involved whatever their background, ethnicity or disability – all can be involved with, and contribute to Parallel London. It just shows that everybody is equal, and for a day it makes people realise that.


You can find out more about Matt’s involvement with Parallel London and the Matt Hampson Foundation. ‘Engage: The Fall and Rise of Matt Hampson’, by Paul Kimmage, is available to purchase online.

Many thanks to Matt Hampson

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Interview | Samantha Renke

Actress, TV Presenter & Disability Campaigner

Here I interview actress, presenter and disability campaigner Samantha Renke. She reveals all about growing up with a disability and her dreams of becoming an actress despite brittle bone disease. She also discusses her involvement with Parallel London 2017.

Here is the link to the interview, originally posted by Disability Horizons.


Parallel London

The 3rd September sees the return of Parallel London, a mass-participation race for people of all abilities. Feature writer Carrie Aimes speaks to disabled actress Sam Renke, ambassador for Parallel London, about why the event is so important and why you should get involved.

Despite her disability, 31 year-old Samantha Renke moved to London five years ago to pursue her long-held dream of becoming an actress. Now a familiar face to many, she has since starred in an award-winning film, music videos, webisodes as well as the popular Maltesers television advert. The former teacher is also a columnist, disability campaigner and charity worker.

As if all this is not enough to keep her busy, Samantha was recently appointed ambassador for Parallel London. Here, we learn more about the rising star and her involvement with Parallel London, the world’s first fully-inclusive, fully accessible mass-participation event.

Life & Disability

1. Would you please tell us a little about yourself, your disability and how it affects you?

I was born in Germany to a German mother and British father. We moved to the UK when I was a baby. I studied French, German, Sociology and European Studies at the University of Lancaster before completing my PGCE in Secondary Education at the University of Cumbria.

Following this, I worked as a high school teacher for a number of years. I was also a trustee for the Brittle Bone Society for 6 years, supporting people with my condition, Osteogenesis Imperfecta (brittle bones).

I am a full time wheelchair user and my bones break very easily. I’ve had around 200 fractures starting in my mother’s womb! I get fatigue and have some breathing difficulties. I do have a PA to help me with day-to-day tasks, which is my saving grace and allows me to live my life to the fullest.

After moving to London in 2012, my debut role was playing Alice Gardiner, a mischievous disabled girl who absconds to London in the film Little Devil. I won best actress and the film won Best Film in the Diversity of Arts category at the LA Diversity Film Festival. From there, I got an agent at Visable People and have appeared in a number of projects since.

I still love my charity work and I am patron of Head2Head, a multi-sensory theatre group. I am also affiliated with some other well-known charities, such as SCOPE. I love writing and have a regular column in Posability magazine and write regular blogs for the Huffington Post.

Maltesers TV Advert

2. People may know you best from the popular Maltesers TV adverts, which aired during the Paralympics. Why did you want to be part of that, and what response did you receive?

I think it’s any actor’s dream to be part of a national commercial as it’s certainly great exposure. More than that, I knew the concept was revolutionary and I felt so excited about the positive impact the advert would have.

Apart from some online trolling, the response has been phenomenal. Every day, without fail, when I leave my flat in East London I am recognised. People want my autograph and selfies. The lovely thing is that my disability is not the reason people stare at me now.

Celebrity Status

3. You’re a celebrity who happens to have a disability. What does this mean to you, and what challenges have you faced?

I always loved drama at school and attended a number of after-school drama clubs. However, one of my teachers took me to one side and told me not to get my hopes up of being cast in an acting role. I suppose at that time, 15 years ago, she had a point – the representation of disability within the media was non-existent. Nevertheless, this was heart-breaking to hear and I dropped all of my classes.

But after being a teacher for a couple of years, I knew I wanted to pursue my passion again. I hope my story encourages more people who have disabilities to get involved in TV, film and presenting. I’d like to think that when I have my own family, my children will follow their dreams, no matter what anyone else says.

Parallel London Ambassador

4. You were recently made an Ambassador for Parallel London. How did you come to be involved with this event?

My amazing friend Daniel White and his daughter Emily, who run the awesome blog the Department of Ability, introduced me to the Parallel team and the rest is history. It is a total love affair!

5. Can you tell us more about what Parallel London is and what it means for disabled people?

Parallel London is a fully-inclusive and accessible fun run and free family festival held at the iconic Queen Elizabeth Olympic Park. Open to all ages and abilities, there are no cut-off times and no barriers to involvement.

Parallel’s inaugural event took place on 4 September 2016. We hosted over 3,000 participants, of which, 41% declared themselves as having a disability. 5,500 people attended our family festival showcasing all different types of inclusive and accessible attractions. This year it is being held on the 3rd September.

6. Why is it so important to you to be involved with such an event?

Being part of a team and having people around you who love and support you for you is so important. As a child I did not get involved in anything as much as I would have liked, and this left me feeling isolated a lot. Parallel is all-inclusive, no matter what your ability. I think this is just amazing.

7. Is there any insider information you, as ambassador, can exclusively reveal to Disability Horizons readers?

Expect some surprises! I’m going to be getting my burlesque on with the amazing Folly Mixtures and their all-inclusive Burlexercise master class. So get your feather bowers ready.

My good friend Stephen Dixon from Sky News will also be at the event presenting for Sky and hosting with yours truly. He has told me that, regardless of the weather, he will be wearing his short shorts!

8. How can we all get involved with Parallel London?

Parallel London is taking place at Queen Elizabeth Olympic Park on the 3rd September. There’s a 10km, 5km, 1km, 100m and the Super Sensory 1km walk, cycle, push or run – whatever you want to do. It’s for all ages and abilities and everybody can be running side-by-side. You can get sponsorship for any charity or cause that matters to you – so why not give it a go?!


For more information on Parallel London visit www.parallellondon.com. You can also find out all the latest information about the event by following Parallel London on Twitter.

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20 Questions Tag!

We Brits have endured turbulent times of late. So, in an attempt to inject a little light relief into proceedings, I’ve devised my own 20 questions tag.

I’ll kick things off and tag a few fellow bloggers who will then (hopefully) answer the same 20 questions. Not the height of excitement folks, I know. But it’s a brief respite from the continual political talk going on right now.

Ok, here goes…

1. Morning or evening person?
Evening. Always have been, even as a kid. I just don’t function in the morning.

2. Night in or night out?
These days (because I’m so old) I prefer a cosy night in with a good film and good food. The weather here in England is generally crap so I really have to force myself to leave the house when invited out on a cold, rainy evening.

3. Lots of friends or a few close friends?
A few friends. My closest circle of friends are those I have known for almost 20 years. It’s best to keep them sweet, they know too much!

4. Time to yourself or time spent with others?
As sad as it may seem, I actually love my own company, especially as I still live with my parents. It’s not as though I have a home of my own. So, I appreciate time to myself all the more. I’ve always been able to occupy myself. My folks often say I would happily play alone as a tot. Take that as you will…

5. Holiday at home or abroad?
Abroad, definitely. I rarely have the opportunity to travel so when I can, I prefer to go abroad, mainly to escape the British weather.

6. Countryside, seaside or city?
Seaside. I live in central England so I’m several hours drive from the nearest coast. It’s a rarely seen sight for me. I always wanted a house overlooking the sea. I just love everything about it.

7. Hot climate or cold climate?
Hot! I have muscular dystrophy and poor circulation. Thus I really feel the cold. I always feel so much better in every sense when in a warmer climate.

8. Books or films?
I’m a big film buff. Admittedly I watch a lot of films. Box sets seem to be the ‘in thing’ at the moment. I’ve been told I should get stuck into Game of Thrones and Stranger Things, among others. I may do at some point. I did watch Fargo season 2. That was decent. But I just don’t have the patience for TV shows. I like to settle down at night and watch a good film. 2-hours and you’re done.

9. Rice or pasta?
Rice. I like pasta but it’s much stodgier. Due to my MD, scoliosis and respiratory decline, I have limited space for food as it is. Plus I find rice more versatile.

10. Tea or coffee or..?
I like the smell of coffee but hate the taste. I’ll drink tea but I’m not a huge fan. I live on Lucozade. Bad I know. But it literally got me through Uni. Can’t believe they’ve changed the recipe! Bloody sugar tax. It really doesn’t taste the same anymore.

11. Cook, takeaway or eat out?
Ooh, I enjoy all three. Depends how I’m feeling I guess. I rarely have a takeaway so when I do it’s a treat. It’s nice to eat out with family or friends. And I do like to cook because it means I’m involved and can eat whatever I want. I’m a bit of a bish, bash, bosh type. I don’t like to be restricted by a recipe.

12. Formal or casual?
Casual, all the way. I don’t do formal!

13. Dogs or cats?
I love both and have always had cats and dogs. I’ve never known life without a pet. If I had to choose I would probably say I prefer dogs. Generally more loyal I think.

14. Play it safe or be daring?
I wish I could say I’m a spontaneous type, but unfortunately MD doesn’t lend itself to such a lifestyle. I hate routine and monotony. I’m as daring as I can be.

15. Idealist or realist?
Realist. I have to be. My whole existence requires consideration, planning and organisation. It’s nice to dream every now and then but dreaming tends to lead to disappointment.

16. Lead or follow?
I guess I’m a bit of both, depending on the context. I prefer to follow as I don’t like responsibility or being held accountable. I’d rather go with the flow. But I am an employer -reluctantly – since I hire my own PA’s. Therefore, this calls for a degree of leadership.

17. Work or play?
Play. Life’s far too short!

18. Lennon or McCartney?
Lennon. Sorry Paul.

19. Love or money?
Love, no doubt. Cliché maybe. Money helps, of course. I wouldn’t turn it down. But at the end of the day, when the shit hits the fan, all you want is your loved ones around you. All the money in the world won’t cure my MD. But love makes life worth living.

20. Share your problems or keep them to yourself?
I’m often accused of being secretive, guarded and evasive. I do bottle things up. I know “it’s good to talk”, and all that. But I just don’t find talking about my problems helps. I don’t like people to know when I’m unhappy or ill or struggling.
I’ll be honest, I find it difficult sharing so much about myself on my blog. I hold a lot back. I’m not a fan of social media and it took me months and months to finally submit. Months and months of friends pushing me to give it a go. I still require the odd kick up the ass to persist.


I hope you enjoyed this post. Let me know what you think.

I tag:

Uncanny Vivek
SimplyEmma

 

 

Guest Posts | All Articles

Since creating this blog in October 2016, I have been incredibly fortunate to write for various websites and organisations.

I am a Feature Writer for Disability Horizons, Co-Researcher with Living Life to the Fullest, and a long-time campaigner for Muscular Dystrophy Trailblazers.

Here is my entire catalogue of articles:


The first article I wrote for Disability Horizons lists my choice of ‘The Top Ten Apps for Disabled People’.

No matter what your disability, there’s an app out there that can assist you in some way. With the help of such technology, we the disabled community can make our lives that little bit easier.

New apps are being developed everyday. But for the time being, here are my recommendations.


For the past decade, I have been involved with Muscular Dystrophy Trailblazers. I wrote a piece about my life with Ullrich congenital muscular dystrophy, which you can read here.

The Channel 4 show The Undateables has proved highly controversial and divisive, particularly within the disabled community. Read my take on the debate here, which also features on the MD Trailblazers website.


 

  • For all my Muscular Dystrophy Trailblazers articles: click here

2009: My first involvement with Muscular Dystrophy Trailblazers.

 

  • For all my Disability Horizons articles: click here

  • For all my Disability Talk articles: click here

 

 

 

 

My interview with Disabled Living.

 


My interview with actor James Moore, for the March/April 2019 issue of Able Mag

Please follow me on Twitter and Facebook