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.
36-year-old Scott Watkin, an eye care and vision development officer with the charity SeeAbility, is one of this years deserving recipients of the British Empire Medal.
Scott, who has learning disabilities and the eye condition keratoconus, is recognised for his tireless work in the learning disability community.
A dedicated ambassador, Scott began his career co-chairing the learning disability partnership board on the Isle of Wight. This led onto an influential role as co-national director for learning disabilities within the Department of Health. He also lectures at the University of Hertfordshire, focusing on eye care, vision and equal rights. However, he notes his work with SeeAbility as a major milestone.
1. Scott, could you please tell Disability Horizons readers a little about yourself and your disability?
I was born with Williams syndrome which is a learning disability. Apparently I am one in ten thousand! Some of my muscles can be quite weak and my coordination can be not great at times.
I went to a special school and teachers never really paid attention to me, and it meant I didn’t really get the grades I wanted to get. I was bullied too which made learning very hard.
It also means I am more likely to have vision problems and actually I was diagnosed with keratoconus which I’ve had two corneal graftoperations on. I have quite a difficult daily routine involving eye drops and contact lenses.
2. How does your learning disability and eye condition affect you, and how have you found working with a disability?
My learning disability only shows when I’m nervous or worried about something, otherwise I’m a very confident person. I just need a bit of support to do my job and I’ve been really lucky to be supported well at SeeAbility.
My vision varies, some days it’s ok some days really poor. But I’m always ready to work!
3. What adjustments have you and/or your employer had to make in order for you to do your job effectively?
If I don’t know a journey my manager will meet me in London and we will continue the journey together. I know my way from the IOW to London very well having made the trip many times.
If my vision is really poor, we put all my information on yellow paper in Arial 16pt font. This helps me to read it better.
When I first started working I had lots of support to make steps in my job. But for me it’s just being able to talk to someone when I need to, and that’s the case at SeeAbility. If I don’t need that then I just get on with my job and carry on!
4. How and why did you get involved with the charity SeeAbility?
I first met Paula Spinks-Chamberlain (Director of External Affairs) at the Department of Health. SeeAbility supported me through my keratoconus and then I did some work as an ambassador. After that I was offered a job!
5. Could you please explain the role you play within SeeAbility?
I’m an eye care and vision development officer and I make sure people with learning disabilities get good eye care. I travel around the country giving training sessions to people with learning disabilities and carers. I need to make sure we lobby government to make sure they understand that eye care for people with learning disabilities is really important.
People with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.
6. You are also on the board of Learning Disability England. What are your aims and objectives in this capacity?
I try and make sure people with a learning disability have a voice. People with learning disabilities need the same access to services as everybody else.
It’s about setting the direction of learning disabilities in England. Lobbying government and challenging the social care cuts. I need to make sure we do what we say we are going to do.
7. Why is it so important to you to campaign for people with learning disabilities?
Firstly, people with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.
Secondly, people with learning disabilities deserve to have their voice heard. We deserve the same opportunities as everyone else as we have so much to offer. We just need the chances to shine.
8. What do you think are the main issues that require attention and improvement?
We need to stop the social care cuts and get a good eye care pathway down for people with learning disabilities so they can get the right eye care!
We need good annual health checks.
And to make sure the government take people with learning disabilities seriously and listen to what they want. For example, most people with learning disabilities want to work, and we just need employers to give us chance so we can achieve what others can have a good life.
9. Congratulations on being awarded a British Empire Medal in the New Year 2018 Honours list. How does it make you feel to be recognised for your achievements?
I never thought I’d be recognised in this way, it’s a real big honour. I’m glad my work is being recognised nationally because it’s really important. It sends a message to all the eye care professionals that I work with, they need to know how important eye care for people with disabilities is.
10. Finally, what tips would you offer anyone like yourself with a similar disability, who is seeking employment?
Don’t stop trying to find employment. Don’t be afraid to say you have a learning disability and it’s ok to ask for reasonable adjustments. You will have so many positives to bring to any role and don’t forget that, you are actually very reliable, more than other people!
I’d like to thank Scott Watkin for taking the time to speak with me.
My interview with Scott was originally published by Disability Horizons, for whom I am a frequent contributor.
Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?
Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the Dating Coach on Wheels. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.
Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.
He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.
Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.
He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.
You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?
I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.
But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.
I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.
I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.
Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?
I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.
I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.
You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?
Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.
I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.
I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!
You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?
I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.
Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?
Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.
With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.
I have two main points:
Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.
Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.
You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?
Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.
I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.
It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?
Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.
There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.
Can you please explain your working methods to Disability Horizons readers?
As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.
For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.
What is the one question you are asked most frequently, and what advice do you give in response?
Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.
Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.
What are your top dating tips for those who are particularly nervous or lacking in confidence?
It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.
I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.
In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.
Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.
Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.
Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?
Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.
Where do you see your career taking you and what more do you hope to achieve?
I’m kind of happy where I am right now. I really just want to help more people.
I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.
I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.
I’d like to thank Amin for taking the time to talk with me.
Please do connect with the Dating Coach on Wheels on social media:
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 years 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 years 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’.
Have you been watching Jonnie perform each week on Strictly?
Are you pleased to see a Paralympian included on the show?
Leave a comment and let me know what you think.
If you liked this article, please share so that others can join the discussion.
Janine Shepherd: a broken body is not a broken person
Former elite athlete and now 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.
Disability Horizons writer, Carrie Aimes, speaks to her 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.
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. But 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 did, in fact, suffer 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 or to let go and accept not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why do you think this was an essential question to pose?
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 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 the 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 say 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.
Here is my latest interview 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’.
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.
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.
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).
‘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.
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.
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.
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.
I recently interviewed up-and-coming disabled actress Samantha Renke on behalf of Disability Horizons.
Sam told me about her life growing up, her disability and her dreams of becoming an actress despite her brittle bone condition. She also told me all about her involvement with Parallel London 2017.
Here is the link to the interview on the Disability Horizons website.
The 3rd September sees the return of Parallel London, a mass-participation race for people of all abilities. Regular 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.
Would you please tell Disability Horizons readers 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.
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.
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.
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!
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.
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.
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!
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?!
I recently wrote a review on my family holiday to Salou in Spain.
If you’re interested to find out how I decided who to book with, where to go and what I thought of the accommodation and location, check out my article for Disability Horizons.
Last year, after a prolonged holiday absence, I decided it was about time I set off in search of sun, sea and sand – a sight unseen here in the Midlands! So, the first thing on my to-do list as 2016 commenced was to organise a trip abroad that would meet all my access requirements. I would be travelling with my parents which presented me with the task of finding somewhere that would satisfy their wants and needs as well as my own.
To say it’s not ideal to holiday with your parents at the age of 27 is an understatement, but it really was my only option at the time. I had resisted their invitation to accompany them abroad for some time but I had reached the point of desperation. There’s only so much British weather a girl can take!
Having devised a short list of destinations, I compared prices online. I previously visited the Costa Dorada region of Spain, booking with www.enableholidays.com, and found it to be a great place to roam around in a wheelchair. However, this time round I found it quite significantly cheaper to book with www.disabledaccessholidays.com.
A few E-mails and phone calls later, and a week in Salou, Spain was booked through this Glasgow based company. Throughout the whole process I interacted with the same agent which was reassuring and more personal I felt. 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. For me the booking process was simple and stress-free as everything was done on my behalf by DAH.
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.
We flew from Birmingham airport on 7th July, 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 created 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, dad was left to manually transfer me as no help was offered. Nothing. Not even a passive, ‘are you okay there?’ Well no actually, I can’t weight bear at all but don’t you worry, we’re quite used to this.
A short and uneventful flight ensued. This was one of my major considerations 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.
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 again extremely helpful and assured us repeatedly that she or another driver would collect us from our hotel at the time and date arranged.
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.
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.
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 me with the 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.