amputee – Disability & Lifestyle Blog

Tricia Downing | Paraplegic, Sports Woman & Novelist

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

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

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

Visit Tricia: www.triciadowning.com

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

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

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

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

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

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

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

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

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

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

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

Chance of Rain

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

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

Interview | Steel Bones Charity

On 30^th May, a determined group of individuals set off on a truly inspirational challenge to become the first amputees to conquer Mount Snowdon. The team, consisting of 18 amputees from around the UK, were led by Paul Clark, who lost his leg as a result of a bone infection following surgery in 2014. Accompanying him was Leigh Joy-Staines, Co-Founder of the voluntary charity STEEL BONES, which works to connect, support and inspire amputee families across the UK to overcome the trauma of amputation.

I was fortunate to interview both Paul and Leigh, prior to their challenge. Here is what they had to say…

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

I was born with clubfoot (talipes) and had about 30 operations before the age of 5 to try to rectify them. The Doctors did the best they could at the time. I managed to get through school with just a few more operations, and lived a relatively ‘normal’ life. I was always in quite a lot of pain but this didn’t stop me, as I just loved playing sports and so I didn’t care about the pain.

I was bullied a lot but luckily had fantastic, grandparents, parents, cousins and friends who stuck by me and gave me the strength I needed inside to keep going. It impacted massively on my anxiety but I hung onto those people around me. Looking back, I was actually quite a popular kid. I just let the nasty name calling go over my head.

I left school early and started working immediately. I always worked hard and partied hard at weekends. But at the age of 23, after working a job with a long commute which involved a lot of walking, I couldn’t take the pain any longer. I then went to see my GP who referred me to an orthopaedic surgeon at Guys Hospital (London).

The surgeon seemed to think it would be a simple operation to put things right. Unfortunately, he hadn’t completed the proper pre-operative checks and didn’t have my notes in the operation. [As a result] he severed my last remaining artery and the nurses didn’t realise the foot’s blood supply was cut off until it was too late. All I remember is my girlfriend (now wife) turning up with my mates to take me home, and I was rushed into an ambulance.

The team at St Thomas’ Hospital were amazing. It became a second home for me since I was there for 5 months whilst they tried to save the leg, and then whilst I learnt to walk again. Since the amputation, I’ve had lots of problems with my stump (which I call JOYBOY) such as neuromas, spurs and infections. My other leg is also now disintegrating as it has taken a lot of pressure since the amputation. I’m now working with some excellent surgeons and physiotherapists to hopefully rebuild it, otherwise I will have to lose that leg too.

2. You are one of the founders of STEEL BONES. Why did you decide to establish the charity?

We had no proactive support at the time of amputation. My girlfriend (now wife) and I just tried to pretend everything was fine and ‘normal’. We didn’t take stock of what had actually happened. I’m still dealing with the trauma and am only just really accepting what happened – It was such a huge shock. When you still want to be the lad about town but your body fails, it breaks you. But, I’ve held on tightly to my family.

We phoned several amputee charities asking for support, but none came through. We felt so lonely and isolated, particularly once our children arrived. Our son Teddy was being asked lots of questions: ‘Why isn’t your daddy strong?’ and, ‘Why does he wear a boot?’

This really hit us hard as we didn’t know how to deal with the outside world, only our little unit. So, we decided to start meeting other amputee families.

It all started with a Facebook group and it’s gone from strength-to-strength.

We have met so many amazing people and it gives us great motivation to know that we are not alone. The charity focuses on the entire family, and not solely the amputee, because an amputation affects the entire family unit including friends too.

We provide support packs and create friendships with families to ensure they have the tools and advice they need to achieve their goals. We also run a weekly fitness club and an amputee football club with Cambridge United Trust and Cambridge FA. Furthermore, we are launching a series of children’s books based on amputee family stories. We also run a schools workshop programme with ‘If Not Me Inclusion Coaching’, which focuses on inclusive sports and raising awareness of amputees.

These projects are very close to our hearts as we know the impact they make. We hope to avoid what our son endured in his first couple years at school, and to ensure no amputee family feels isolated. We also have an events programme that all amputee families are welcome to join.

Our biggest event of the year takes place on 29th July 2018 in Cambridgeshire. To find out more join our Facebook group: STEEL BONES or sign up to our mailing list http://steelbone.co.uk

3. Can you tell us exactly what this particular challenge involves?

The challenge involves a group of amazing amputee families climbing

Mount Snowdon. We have been training for the past 6 months and have endured falls, knocks, sores, blisters, aches and pains. Despite this, the hugely inspirational group has kept on going. It is just so exciting to see them achieve this incredible goal.

STEEL BONES is entirely voluntary so the funds raised by this go directly to amputee families in the UK. It provides a lifeline by putting on more clubs, events and proactively supporting the amputee community.

4. Paul Clark, you’re heading the challenge to climb Mount Snowdon in May. How and why did you first become involved with STEEL BONES?

After my amputation on 30th May 2016, it was a very hard and lonely time for myself and my family. We didn’t know who to turn to for help and support and we felt very isolated. We didn’t know what support we could get or where to even start looking. We found there to be a big lack of understanding in the public and government as to what amputation means for an individual and their family.

We came across the STEEL BONES Facebook group and realised they were local, and had been in a very similar situation to us when Leigh lost his leg. They were offering free help and support to amputees and their families, so we contacted them for some advice.

Their support from day one was fantastic. Not only did they give us advice on who to contact regarding different matters, they also helped from with forms, letters and so on until we were sorted. Their support didn’t stop after this – they continue to support myself and my family with information and advice. They have also introduced us to many new friends in the same situation. It has become one big happy amputee family!

Paul Clark, who led the team of amputees in their challenge to climb Mount Snowdon

5. Where did the idea come from?

My wife and I have always wanted to climb Mount Snowdon, so we said let’s still do it and raise money for STEEL BONES to thank them. The money raised will allow them to continue supporting other amputees and their families throughout the UK.

6. What are you hoping to achieve as a result of the challenge you have set for yourselves?

Not only is this a personal goal of ours, and a massive challenge, we also hope to promote amputee awareness throughout the UK. We want people to be aware that just because I have lost a limb, it doesn’t make me any different, and I can still overcome challenges like anyone else.

I have managed to get a great team to join me on this amazing adventure, and it’s great that I have managed to pull together a group of amputees from around the UK. Not only will this bond us as a group, it will challenge us all and show that amputees can do anything, whilst also raising a fantastic amount of money for STEEL BONES.

Show your support for the team and make a donation by clicking here.

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Interview | Jackie Hagan

Disabled Poet and Performer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One person’s trying doesn’t look like your own.
You don’t have to feel guilty for what you have. It’ll get in the way of you wanting to help.
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.

Jonnie Peacock and Strictly Come Dancing

Here is my latest article for Disability Horizons!

A move forward for disability representation within the media!

As a die-hard Strictly Come Dancing fan, and being disabled myself, admittedly I was pretty excited to hear that Paralympian Jonnie Peacock MBE would be competing in the 15th series.

In a landmark move forward for disability representation in the media, the 24 year-old sprinter is the first physically disabled contestant to appear on the main, primetime show.

Jonnie has taken on the ‘glitterball’ challenge in the hope that it will break down peoples’ views and “change some of the stigmas” around disability.

He added, “some people have preconceived notions of what people can and cannot do based on looking at them, but I think sometimes it’s just a case of not judging a book by its cover.”

Jonnie’s right leg was amputated below the knee after contracting meningitis, aged five. Clearly though, this has not held him back. He competed at the London 2012 and Rio 2016 Paralympics, winning gold medals in both games, and breaking a record for the fastest 100m T44 time in the process.

Partnered with professional dancer and last year’s runner-up Oti Mabuse, he quipped that if voted through to week three, he will ‘glitter up’ his prosthetic leg.

Having made a smooth debut with a charming and technically adept waltz, Jonnie opted to dance with a brand new blade in week two. A decision that paid off!

An energetic jive to Chuck Berry’s Johnny B. Goode caught the attention of the judges and public alike. Earning 29 points put him fourth on Saturday night’s leader-board. His combined score placed him sixth overall. It’s only after celebrities have danced twice: one ballroom and one Latin routine, that they face the public vote.

Since the jive is such a fast-paced dance that requires a lot of bounce action, the blade was a wise move. Despite being highly praised by all four judges for his “outstanding kicks and flicks”, Jonnie later commented that it was “tough” dancing with a blade which is much longer than his usual prosthetic limb.

In fact, the only criticism he received was for his upper body, particularly the lack of focus and refinement in his arms. Both Jonnie and his partner Oti agreed, this is something he has found particularly challenging.

The improvement from the previous week was evident, with greater enthusiasm and commitment to the complex choreography, characterisation and story-telling.

Jonnie revealed his disappointment with the waltz which he felt could have gone better. In contrast, the action-packed jive suits his fun-loving personality much more. He gave it his all, shedding the nerves and demonstrating increased confidence and showmanship.

His memorable jive rivals those of former Strictly winners Ore Oduba, Jay McGuiness and Jill Halfpenny. What makes it all the more impressive is the fact that the jive is notoriously difficult to master, and this was only his second performance. Furthermore, unlike several fellow competitors, Jonnie has no dance experience whatsoever.

The couple’s latest dance, a Paso Doble to the Indiana Jones theme tune achieved a respectable 26 points, placing them eighth for movie week. The slight down-score can be attributed to Jonnie’s dislike of the Paso which demands a stern, serious expression. It also marked a return to his usual prosthesis.

The sportsman says of his choice of prosthetic, “when [the dance] is controlled, slow and not so much jumping around it will probably be my standard leg”. So, it seems the blade will make a reappearance for at least some future Latin routines.

Having captivated the nation with such an endearing and “inspiring” start, could Jonnie be headed for Strictly glory? He has the skill, stamina, drive and discipline, with the potential to go far in the competition. So, why not!

This however, is not the first time we’ve seen an amputee dance with a blade on Strictly. Lance Corporal Cassidy Little, a Royal Marine medic, performed a winning Paso Doble with pro-dancer Natalie Lowe on a one-off edition of The People’s Strictly for Comic Relief in March 2015.

Cassidy, a former comedian and avid tap-dancer, lost his right leg below the knee in 2011, when hit by an improvised explosive device (IED) while on tour in Afghanistan.

Following the loss of his lower leg, Cassidy who in fact studied ballet at University in Canada many years prior, thought his dancing days were over. But a perfect score of 40 for the dramatic and expertly executed Paso Doble proved that his disability need not impede on his natural ability for dance.

Producers invited the war veteran to return for a Christmas special that same year, since the impression he made on the viewing public was so evident. Partnered once again with Natalie Lowe, this time the couple danced an equally impressive, festive-themed jive and competed against able-bodied celebrities.

Earlier this year, Gold medal winning Paralympic sprinter Heinrich Popow dropped out of the German version of the show, Lets Dance, because of swelling to his stump – a concern for prosthesis wearers due to fit and friction. Heinrich, who incurred an injury in week two, pushed through to the semi-final. But, in the end he was unfortunately forced to concede defeat to prevent further damage.

British amputee and former model Heather Mills wowed audiences with her daring moves on the American version, Dancing with the Stars, in 2007. She approached the experience with determination and humour, joking candidly that her prosthetic limb could well fall off mid-dance! The undefeated disability advocate later appeared on the popular ITV show, Dancing on Ice.

Back here in the UK, a Sport Relief edition in 2014 featured four Paralympians: wheelchair racer Hannah Cockroft, blind footballer David Clarke, former World Champion javelin thrower Nathan Stephens and sitting volleyball player Maxine Wright. 10-time Paralympic Gold medalist Lee Pearson took the seat of regular judge Craig Revel Horwood to help select a winner.

Strictly Come Dancing, established in 2004, is now a mainstream television programme in British popular culture. Reaching viewing figures of over 11 million, it is a perfect platform for contestants to raise their profile.

The inclusion of Jonnie Peacock in this year’s lineup has already made a huge impact on the disabled community. It represents forward-thinking, equality and disability in the mainstream. Furthermore, we are encouraged and yes, inspired to focus on ability as opposed to disability and limitation.

Widespread visibility of disabled individuals, such as Jonnie, in the media, will naturally be met with curiosity and questions. But that’s okay, that is progress. Questions result in answers which in turn leads to familiarity, recognition and ‘normalisation’.

Tag: amputee