Interview | Author 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 us 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 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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Holiday Season | My trip to Salou, Spain (2016)

Though I would like to be, I’m not a frequent traveller. Living with a physical disability – in my case, Ullrich congenital muscular dystrophy – can make overseas travel difficult and stressful. However, after several years without a holiday (neither at home in the UK or abroad) I decided it was about time I set off in search of sun, sea and sand – a sight unseen here in the Midlands!

Most importantly, the holiday must meet all my accessibility requirements, (I am a non-ambulant, powered wheelchair-user). Another major consideration was my parents, with whom I would be travelling. This presented me with the task of organising a holiday that would satisfy their wants and needs as well as my own.

Of course, it’s far from ideal to travel with your parents at my age (27), but it was my only option at the time. I resisted their considerate invitations to accompany them abroad for years, but I had reached the point of desperation – one way or another, I really needed to get away. There’s only so much British weather a girl can take!


Planning & Booking:

7 years earlier, I visited Tarragona, situated in the Costa Dorada region of Spain. I found it to be a great place to roam around in a powered wheelchair. Back then I booked with Enable Holidays.

Salou, situated in the Costa Dorada region of Spain

For personal reassurance regarding reliable accessibility (and frankly to make life a little easier), we decided to return to Costa Dorada. When comparing prices online, I found it significantly cheaper to book with Disabled Access Holidays (DAH) – a small business based in Glasgow, UK.

Throughout the whole booking process, I interacted with the same agent who sorted everything. Airport assistance and wheelchair accessible taxi transfers were organised. An electric wheelchair was also hired for the week, as I prefer to travel with just my manual chair for fear of damage to my Quantum 600 (I’ve heard horror stories from fellow wheelchair-users).

The only thing I had to arrange was travel insurance for myself. DAH recommended AllClear, even offering a discount code. I enquired with a few providers though they all quoted a similar price. Just one week in Spain would have cost me over £500 and so, admittedly, I chose to take the risk and travel without insurance.


Off we go…

We flew from Birmingham airport on 7th July (2016), arriving in sunny Reus after a thoroughly chaotic checking-in and boarding process. Conveyer belt malfunctions, lack of staff, delays and the absence of assistance at Birmingham established an initial sense of unease.

What really frustrated me was the fact that we boarded via the centre of the plane – my parents and I being made to wait until last. Since our seats were at the front of the plane, I had to struggle some distance in an old aisle chair, bumping elbows with strangers all the way (bear in mind, I’m pretty damn petite). I can’t stand these cronky aisle seats, mainly because they offer no postural support whatsoever and are incredibly uncomfortable. My balance is poor and consequently I always feel I’m about to fall when forced to resort to one.

Upon reaching our front row seats, my poor Dad was left to manually transfer me by himself, as no one offered to help. There was a complete lack of care and consideration from all staff at Birmingham.

A short and uneventful flight ensued. This was one of my major concerns when organising the holiday. A long haul flight was a no-go as there’s just no way I would be able to access the bathroom. With the best will in the world, in my case it really can’t be done.


Disembarking at Reus:

15-20 minute transfer from Reus Airport to Hotel Medplaya Piramide in Salou, Spain

After the disappointment at Birmingham airport I was relieved to receive a much more conscientious service when disembarking at Reus. The assistance for passengers with disabilities was swift and effective. Without question, the staff safely lifted me from my seat straight into my manual wheelchair which was brought to the front of the plane where we exited, this time without an audience. I was so thankful as I hate to have to burden my parents with the physically exhaustive task of manually transferring me.

Our pre-booked taxi transfer was at first nowhere to be found but soon arrived after being prompted by a phone call. The English speaking driver was extremely helpful and repeatedly assured us that she or another driver would collect us from our hotel at the time and date arranged.


The Hotel:

Medplaya Piramide Hotel in Salou, Spain

And so we found ourselves at the Medplaya Piramide 4 star hotel in Salou, Costa Dorada. The three of us shared one, accessible room situated on the second floor resulting in a daily battle for the lift which everyone felt the need to use, regardless of age or ability.

Aside from the presence of a grimy shower chair with one, dismembered footplate, it’s difficult to see how our room could be considered ‘accessible’. The bathroom comprised a regular bath along with a roll in shower which flooded our entire room and out into the hallway within seconds. The bathroom door veneer was all peeled away suggesting this is a long term issue which the hotel has failed to address. We had to call reception for extra towels to mop up the excess water flooding our room after every brief shower.

Furthermore, the sink was far too high and unreachable for me to use whilst sat in my chair. The toilet was lower than normal and lacked any surrounding support aside from a fairly redundant and misplaced grab rail affixed to the wall. A small lip in the patio door may cause an obstacle for some in accessing the sizeable exterior balcony but with a bit of a run up I didn’t have a problem in my hired power chair.

The hotel itself, both interior and exterior, I found to be suitable for anyone with a disability. With smooth, flat surfaces, ramp access where needed, wide open spaces to manoeuvre, and a large ground-floor disabled loo, I was able to roam around completely independently. There’s also a pool hoist – a clean, fully functioning pool hoist!

With plenty to keep you occupied including a bar, restaurant, pool room, terrace area, as well as day and night-time entertainment, this modern hotel caters for all ages and abilities. The staff too were welcoming, sociable and most accommodating.


Location:

There are some steep pavements surrounding the hotel to be aware of, but plenty of slopes and access points more than make up for this. The hotel is ideally situated, just a short stroll to the impressively accessible Levante beach, 250m from Salou town centre and 1.5km from Port Aventura theme park. The area for the most part is flat and even, making it ideal for wheelchair users.

The Beach:

I have to say the major selling point for me was the beach. Though not an experienced traveller, of all the beaches I have ever visited this one is by far the best. It’s vast, it’s flat, and there are numerous platforms which allow wheelchairs and prams to enjoy a smooth ride right down to the waters edge. I was pleased to see many others with various disabilities accessing the sands without the all too familiar struggle.

Furthermore, the individuals who hire out sun loungers could always be counted on to offer a helping hand if and when needed. Without question they would often come running to the assistance of someone. This is not part of their job, nor is it commonplace (sadly), and so I feel it worthy of mention.


On the whole my week in Salou provided much needed respite and relaxation. However, the biggest dilemma was saved for our last day. Our pre-booked taxi never arrived so we were forced to ask reception staff to telephone for a local cab asap. This took over an hour to arrive since there is only one wheelchair accessible taxi in the local area. Fortunately our return flight was delayed otherwise we would certainly have missed our flight. Despite this rather stressful conclusion to an otherwise enjoyable holiday, I would definitely recommend Disabled Access Holidays. However, it’s also important to do your own research and investigation prior to committing to any accommodation and travel arrangements.


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Guest Posts | All Articles

My first article for Disability Horizons lists the ‘The Top Ten Apps for Disabled People’.

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.


2009: My first involvement with Muscular Dystrophy Trailblazers.

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

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