My Top 10 Disabled Celebs | The Girls

The Girls:

My latest article for Disability Horizons showcases my pick of the top 10 disabled FEMALE celebrities. Because, in the wise words of Beyonce, girls run the world!

*Last year, Disability Horizons compiled their top 10 disabled celeb’s, including both men and women. To avoid repetition, I have not included any of the women from that previous article.

There is a great deal of ongoing discussion and debate around the inclusion and representation of disabled people within the media. Put simply, there is not enough diversity. Still, in 2017, the vast majority of British ‘celebrities’ are able-bodied.

However, we are seeing the emergence of more and more disabled people on our television screens and in the public eye. But, how many can you name? When contemplating this very question, I realised that most of those who immediately came to mind were male – Stephen Hawking, Warwick Davies, Alex Brooker, Adam Hills, Ade Adepitan and Jonnie Peacock, to name a few.

So what about the ladies?…

Hannah Cockroft MBE

Hannah, who has cerebral palsy, suffered two cardiac arrests within 48 hours of birth, which affected two parts of her brain. She was left with balance, mobility and fine motor impairment.

But this has most certainly not held her back. She is a gold medal-winning Paralympic wheelchair racer and 10 times world champion. In 2012 she became the first Paralympian to break a world record in the London Olympic Stadium for the 100 metres T34.

In 2014 she won the Sport Relief edition of Strictly Come Dancing with professional dancer Pasha Kovalev. That same year she launched 17 Sports Management Limited, a company representing disabled athletes.

Hannah continued her reign of success at the 2016 Paralympics in Rio where she won three gold medals.

Katie Piper

The victim of a vicious acid attack in March 2008, Katie has endured more than 250 surgical procedures to date. She suffered full-thickness burns (where both layers of the skin are destroyed) and had to wear a face mask for 23 hours every day. She also swallowed some of the sulphuric acid, damaging her throat, and was blinded in her left eye.

In 2009, the former model shared her horrific ordeal in the Channel 4 documentary Katie: My Beautiful Face. She also established the Katie Piper Charitable Foundation, which supports those with severe burns and disfigurement injuries.

In addition, she is now a successful author, television presenter, magazine columnist and philanthropist. An inspiration to many, Katie married in 2015 and is currently expecting her second child.

Cerrie Burnell

Cerrie was born with no right forearm and is severely dyslexic. Since childhood, she has always refused to wear a prosthesis or hide her disability.

An all-round entertainer, Cerrie is an accomplished actress, singer, playwright, children’s author and TV presenter. Between 2002-2008, she appeared in Holby City, Eastenders, Grange Hill, The Bill and Comedy Lab. She then transitioned to presenting, working on The One Show, The Wright Stuff and CBeebies (Jan 2009 – April 2017).

But her first appearance on children’s television was met with controversy. Some claimed that the presence of someone with a physical disability like hers could scare young viewers. In response, Cerrie spoke candidly about her disability and how it’s important that children are exposed to differences, for which she was widely applauded.

She now regularly speaks out in favour of diversity and the inclusion of disabled people in the media. In fact, she recently took part in the Channel 4 documentary Diverse Nation. She’s since reached an even wider audience by presenting all the swimming events for the Channel 4 and the 2012 Paralympics.

Named by The Observer as one of the top 10 children’s presenters of all time, Cerrie has also been declared, by The Guardian, as one of Britain’s 100 most inspirational women.

A supporter of many charities including body-confidence organisation Body Gossip, Cerrie now wants to focus on writing more children’s books and acting.

Francesca Martinez

Critically-acclaimed stand-up comedian Francesca Martinez first became prominent playing Rachel Burns in Grange Hill (1994-8). Since, she has starred in BBC shows Holby City, Doctors and Extras.

But it’s not her acting that she’s most well known for, it’s her comedy. With a self-deprecating sense of humour, Francesca, who has cerebral palsy, describes herself as “wobbly”. In 2000 she became the first female to win the prestigious Daily Telegraph Open Mic Award at the Edinburgh Festival. She was also named one of the 50 funniest acts in British comedy by The Observer.

Also a campaigner and activist, Francesca has organised many charity shows and is a patron of several charities, including Evenbreak, which helps pair disabled people with inclusive employers. She’s also an outspoken opponent of government welfare reform, in 2012 launching the campaign War on Welfare (WOW), which called for an end to disability benefit cuts. She later secured the first parliamentary debate for disabled people by disabled people.

In 2013 she won the Public Affairs Achiever of the Year Award and the following year was named one of Britain’s most influential women.

Her recent sell-out comedy tour was followed by a best-selling book, both titled WHAT THE **** IS NORMAL?! She is currently working on a feature documentary of the same name.

Cherylee Houston

Screen and theatre actress Cherylee was diagnosed with Ehlers-Danlos Syndrome type III (EDS) at the age 23. She has appeared in Doctors, The Bill, Holby City, Emmerdale and Little Britain.

Her most recent role is that of Izzy in Coronation Street, which she has played since 2010, and is the soap’s first disabled character to be played by a disabled actor.

Aside from acting, Cherylee established the Manchester-based youth project TripleC, which aims to make drama accessible to all. She has spoken out about a number of political issues too, including the Conservative cuts to disability benefits and the representation of disability in the media. She also continues to raise awareness of EDS.

Anne Hegerty

Better known as The Governess in the award-winning ITV quiz show The Chase, Anne has a form of autism. In 2005, after watching a documentary about Asperger’s Syndrome and identifying with the symptoms, Anne told her doctors she believes she has the disability. It took two years for her to be officially diagnosed, during which time she lost her job as a proof-reader, due to her inability to multi-task.

Unable to pay her bills, Anne was confronted by bailiffs on New Year’s Day in 2008. She later sought advice and assistance and is to this day in receipt of Disability Living Allowance. Around the same time, her social worker encouraged her to audition for The Chase and even paid her travel costs to get there.

She is now a highly successful television personality and professional quizzer, have participated in Mastermind, Fifteen to One and Brain of Britain. Anne also talks candidly about her life with Asperger’s Syndrome and how it affects her.

Jess Thom

Jess, a comedian and public speaker, was diagnosed with the neurological condition Tourette Syndrome in her early twenties, and also uses a wheelchair. She’s most widely recognised for her memorable appearance on Russell Howard’s Good News in October 2015. The interview garnered much attention and has subsequently been viewed more than 600,000 times on Youtube – you can check it out in our article on 10 awesome disability-related videos.

In 2010 she co-founded Touretteshero, a blog that documents what it’s like living with Tourettes, featuring articles and videos. Its first production, Backstage in Biscuit Land (2014), met with critical acclaim. It has since toured nationally and internationally.

She has appeared on various television and radio programs including The Late Late Show, This Morning and Fry’s Planet Word. In 2013 she also delivered a TED talk about the misconceptions of Tourette’s and the creative potential of tics. While admitting her Tourette’s presents challenges and has been met with discrimination, she prefers to “celebrate [its] creativity and humour.”

Jess is an outspoken advocate and campaigner for disabled people’s rights. Her work often draws attention to the environmental and social barriers that prevent inclusion. An opponent of the medical model of disability, Jess insists her Tourette’s is a source of creativity, her wheelchair allows her freedom, and she is disabled not by her body but by the inaccessible environment.

Libby Clegg

Libby is a Scottish Paralympic champion sprinter, having won gold and broken records. She has a deteriorating condition Stargardt’s macular dystrophy, leaving her with only slight peripheral vision in her left eye. She is registered blind and is an ambassador for the Royal Blind Charity.

She has represented Great Britain in the T12 100m and 200m races at the 2008 Summer Paralympics, and the T11 100m and 200m in 2016 at the Paralympic Games in Rio. She is also the 2012 IPC European Champion and 2013 IPC World Champion.

As if she isn’t busy enough, Libby is also a course tutor and ambassador for Ability Training (ability-training.com), offering accredited disability specific awareness courses for sports coaches and fitness professionals.

Along with her beloved guide dog Hattie, she is helping to educate dog owners on the importance of nutrition and health. Libby raises awareness of the essential part guide dogs play in the lives of those with visual impairment.

She was recently honoured in the 2017 New Year’s honours service when she was appointed MBE for her contribution to sport.

Sarah Gordy

Award winner Sarah, who has Down’s Syndrome, is best known for her role as Lady Pamela Holland in the 2010 BBC TV series Upstairs Downstairs. She has also appeared in Holby City, Call the Midwife and Doctors, as well as various short films, radio dramas, commercials and many theatre productions.

She most recently portrayed Orlando Quine in the BBC series Strike: The Silkworm, based on the books by J.K. Rowling.

She is an ambassador for Mencap and patron of Circus Starr, a performance group that does shows for disabled children. When not acting, she volunteers at her local British Heart Foundation charity shop.

Genevieve Barr

Star of the latest Maltesers advert, Genevieve was born deaf. Having never learned sign language, she lip reads, and is, in fact, a professional lip-reader for different organisations.

She had a major role in the 2010 BBC drama The Silence, and the previous year played a deaf nurse in the Channel 4 comedy, The Amazing Dermot. Following her Bafta and International Emmy Award nominations for The Silence, she went on to act in the BBC3 drama series The Fades, and Shameless on Channel 4.

A freelance disability consultant and public speaker, Genevieve works with the charities Hear the World, Action on Hearing Loss and AFASIC – a charity for children with speech, language and communication difficulties. She also runs courses and workshops for disabled actors.

What do you think of my choices? Who would be in your top 10?

Please leave a comment and share this blog post if you enjoyed it.

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’.

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.

Thanks!

Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.

My Experience

Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.

Aged nine, I was offered corrective scoliosis surgery.

At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.

There was no faffing around; this guy was straight to the point!

He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.

I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.

Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.

Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.

How I Made My Decision

As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.

My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.

It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.

We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.

My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.

I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?

1 Year Old Today! | Blogiversary

It’s now been one year since my blog, Life on the Slow Lane, was created. I finally bit the bullet on 5th October, with my first (proper!) post going live on 11th October.

As you can see from that first shabby entry, back then I lacked a specific objective. I just wanted to get going after contemplating blogging for many months prior.

Over time I have (I hope) managed to focus the aims and purpose of my blog.

I now concentrate primarily on disability issues, specifically those relating to muscular dystrophy. Here I share my thoughts and experiences, having lived my entire life with Ullrich congenital muscular dystrophy.

Blogging opportunities

Over the past twelve months, I have been extremely fortunate to write for other notable publications including Muscular Dystrophy Trailblazers, Disability Horizons and Limitless Travel.

Life on the Slow Lane has enabled me to interact with many other disability bloggers. The amazing Simply Emma generously invited me to guest-blog for her, which I did in May and July. Then more recently I collaborated with the lovely Gemma over at Wheelescapades.

My blogging highlight of the year

A particular highlight for me was the overwhelming response I received for the piece I wrote about my life with UCMD. The fact that it is an especially personal and exposing piece makes the positive feedback all the more touching. To date, this, my most popular blog-post has been viewed over 11,700 times.

Final thoughts

Admittedly, it’s been challenging and time-consuming. I have so many thoughts and ideas, yet not enough time to execute them all.

I often feel like I’m playing catch-up, mistakenly comparing myself to other much more established disability bloggers.

I’m not a big fan of computers and otherwise avoid them if at all possible. Initially, I had no clue how to even set up a blog, let alone edit and customise one.

I realise many of my peers are adept with design software, graphics and managing websites. But I’m just not. Computers are in no way of any interest to me. I’m old school! So this, along with social media, is something I have had to familiarise myself with.

Blogging goals for the next year

• Continue to upload regular posts
• Reach a wider audience and increase my readership
• Raise awareness of Ullrich congenital muscular dystrophy
• Meet other like-minded disability bloggers

Thanks to you

I’d like to thank each and every person out there who has read any of my articles. I truly appreciate your feedback and support!

As long as Life on the Slow Lane attracts an audience, however small, I will continue to write.

Hoists in Hotels | MDUK Trailblazers

Last month Muscular Dystrophy Trailblazers launched their report following an investigation into the need for hoists in UK hotels.

Over 100 Trailblazers responded to the survey, sharing both positive and negative experiences.

This is an important issue that affects the lives of so many disabled people, myself included. Without the essential facility of a ceiling hoist, we are denied the opportunity to travel, whether for work or leisure purposes.

With only 18 UK hotels having installed ceiling hoists for disabled guests, this is clearly an overlooked and ill-considered feature. Who is designing these ‘accessible’ hotel rooms, anyway?!

I was one of the respondents to the Trailblazers survey. Here is my view:

“I am an infrequent traveller, not because I lack the desire but because it is so difficult to find appropriately adapted and affordable hotels. Even getting away for a single night is an almost impossible challenge, since hotel rooms are, disappointingly, not equipped with ceiling track hoists as standard.

Although some people get around this problem by hiring (at an extra cost) or taking with them a portable hoist, this is not practical for all. Portable hoists are cumbersome, difficult to store, transport and manoeuvre. Furthermore, many people simply don’t have access to a vehicle large enough to carry such large-scale equipment.

I have Ullrich congenital muscular dystrophy and am completely non-ambulant. I can’t safely transfer and so I either have to be hoisted or manually lifted. Understandably most people, excluding family, are reluctant to do the latter. So, if I want or need to get away from home, my only current option is to ask family members if they are willing to lend their time and support (far from ideal).

With less than 20 hotels in the UK equipped with ceiling track hoists, our options are severely limited. For those of us who need this facility, a premium cost is incurred, and then we are restricted to specific locations. Sadly we are not free as others are, to occupy any hotel room in a hotel of our choice, anywhere in the country.”

Click here to find out more information and from other contributors.

Get To Know Me | Interviewed by Wheelescapades

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

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

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

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

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

1. What made you decide to write a blog?

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

2. What do you want your blog to achieve?

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

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

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

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

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

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

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

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

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

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

Water!

8. What is your favourite way to relax?

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

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

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

10. What would be your dream job?

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

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

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

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

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

13. What one thing would you change about yourself?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t think it is.

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

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

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

https://wheelescapades.com/

https://twitter.com/gemmaorton

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A Welcome New Arrival 🍼

Hi folks! How is your September so far? Mine has been pretty amazing for one very important reason.

At the end of August, my big bro and his wife welcomed their first child – a bosting baby boy! This makes me an incredibly proud and immensely excited auntie.

Here I shall refer to him aptly as Mr Squidge. But don’t worry guys, the new parents have gone with a nice traditional name that’ll see him through school unscathed.

Mr Squidge is, thankfully, a healthy, happy and content little bundle. He is a super cool character – by far the most chilled out baby I have ever known.

When he’s not closely examining ceiling lights (which are hugely fascinating!) or contemplating life’s many mysteries, Mr Squidge enjoys milky time, sleepy time and lots of poopy time!

A particular highlight was when he casually peed on his granddad’s lap! Well, when you’ve got to go…

Squidge is now three weeks old and it’s amazing to see how much he has developed already. His baby blues are wide open and ever inquisitive, and he is determinedly trying to hold his own head up.

Today, my mom and I spent all afternoon with him at our house. His Mama was here too of course. He’s not quite advanced enough to drive himself over. Not yet anyway.

While I was holding him, he spent quite some time studying, and trying to grab my face, no doubt giving me the once over. Can’t blame the kid really. I’d be suspicious of me, too.

We’re a small family, fortunate to live in close proximity. Being only a 10 minute drive away from my new baby nephew means that I can see him often and be a hands-on auntie (or as hands-on as my disability will allow).

I can’t wait to watch him grow, to comfort him, read to him, get messy at meal times, to blow bubbles, paint, draw and play with Play-Doh! Come on, who doesn’t love Play-Doh?!

But equally I’m reluctant to wish away the time and fast-forward his life. Every day is so precious and so cherished. …Too gushy??

Anyone who knows me personally will tell you how much I love kids. Give me a gaggle of kids over a room full of adults any day. The play, the silliness, the cuddles; the unpredictability and informality – what’s not to love?

So, suffice to say I am on cloud nine right now. If you read my recent life update, you will know that things have been somewhat stressful of late. But, the squidgey new addition to our family has truly mitigated all other worries.

Getting to know… Wheelescapades | 20 Questions

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

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

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

Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

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

2. What is your dream job?

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

3. What do you most regret?

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

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

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

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

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

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

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

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

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

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

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

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

8. What is your ideal holiday?

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

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

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

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

I think I might need longer than a day!

10. Who or what inspires you most in life?

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

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

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

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

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

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

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

14. What is your biggest fear?

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

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

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

15. What annoys you most?

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

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

16. What makes you happy?

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

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

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

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

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

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

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

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

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

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

20. Why did you become a blogger?

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

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

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

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

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

https://wheelescapades.com/

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

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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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Life Update ~ Carers, Hoists and OT’s

Hi folks, I hope you are all healthy and happy.

I feel like it’s been a while since I blogged about the goings-on of my day-to-day life. Not a particularly exciting post, granted. But I thought it might be useful to share these ‘goings-on’ with you, as I’m sure there are some of you facing similar struggles.

I have for the past few months been occupied with life crap – specifically, disability-related life crap – which has meant that blogging has unfortunately had to take a backseat.

Righty right, I’ll try and keep it brief…

Care

As some of you may know, I live with my parents who are my primary source of support. I do have a part-time carer who I employ, but otherwise my Mom (yes, I say Mom vs Mum) is my main caregiver. Sadly she herself suffers with progressive osteoarthritis, and following exploratory surgery in October, it was decided that she needed a full knee replacement.

This in fact took place on Sunday 20th August, although it wasn’t until a couple of months ago that Mom was given a date for surgery. However, prior to this I had to put in place provision for my care needs. This involved recruiting a second carer and ensuring I have all the equipment I would need.

For the past 4 months I have searched for a second carer. I advertised everywhere and anywhere – newspapers, news agents, local shops and the post office, job sites, Facebook and so on. The response has really surprised and frustrated me – so many no-shows, let downs and people failing to read or understand the basic job specification.

I ask very little of applicants. I don’t request references, qualifications, experience or even a CRB/DBS (criminal records check). I interview informally in my own home, and with employees I am flexible, easy going and more than fair, taking into consideration their individual circumstances.

However, despite the fact I am completely non-ambulatory, I have never used a hoist. Thus far, family and carers have always preferred to lift me manually as it’s much quicker and frankly less faff! I’m only tiny – approximately 5 feet tall and 5.5 stone in weight. So until very recently, it has always suited to go without a hoist.

Understandably this is off-putting to potential applicants. But, every carer I’ve ever employed has openly admitted that working for me is a breeze compared to any other job they’ve had, and that for them the lifting is a non-issue. Nevertheless, I appreciate that most would prefer not to lift – that’s fair enough.

Hoists

With this in mind, I instigated the process of applying for a ceiling track hoist to be installed in my ground-floor bedroom/ensuite bathroom. I will need a H-frame in the bathroom and a short track from my bed to the bathroom.

Not a huge ask really, particularly as I have never received any support in the way of equipment. Everything I have – wheelchairs, bed, bath lift etc. has been self-funded. The post-code lottery is a very real and unjust thing, people! But that’s a topic for another day…

Dealing with Community Occupational Therapists

I contacted the community Occupational Therapists, explained the situation and requested a needs assessment. I was initially fobbed off with the excuse that they’re vastly understaffed and that I would need to be terminally ill in order to qualify. When I asked how they suggest I manage after Mom’s operation, the OT replied that I should “camp out” and be dressed, bathed and toileted on my bed!

Disgusted at her casual disregard, I asked how she would feel having all her personal care needs carried out on the bed she sleeps in. “Oh well, this is the situation we’re in. It can’t be helped”, was her insensitive response.

I then contacted my neuromuscular consultant who wrote a letter of support. On receipt of this letter, the OT’s suddenly found time to carry out a needs assessment in my home – shocker! (It’s not what you know, but who you know, right!?)

Following this, two reps – one from TPG, the other from Prism Medical – came and measured up in order to provide quotes for the ceiling hoist. I have since learned that the second quote is unusable, which frankly is no surprise, as he clearly had no clue what he was doing; at one point asking to see the gas meter. Even the OT who accompanied him questioned his experience.

In the meantime I have been issued with a portable hoist, though it has taken many weeks to receive a usable sling. Rather than measuring me, then visiting me in my home with a variety of slings to try, the OT’s insisted on sending one at a time. After much harassment from me, a community OT finally conceded and actually attended to properly assess me for a sling.

Honestly, they complain that they have a backlog of work and no time, and yet they waste so much. The sling issue could have been carried out in one appointment. Simple, done, move on. But instead, they chose to drag it out for weeks simply because they wouldn’t visit or listen to the patient.

And now…

Today is Sunday 10th September, and no further progress has been made with the ceiling hoist. Yet again I will have to chase the OT’s, otherwise nothing will ever happen. Sad but true.

I had taken on a second carer who began shadowing at the beginning of August. She was very enthusiastic, supportive and accommodating – said all the right things. Then whilst on my way to visit mom in the hospital, two days after her surgery, I received a message from the new carer, who was due to work that evening. She issued a stream of excuses as to why she couldn’t (translate: wouldn’t) do the job.

Until then, my current carer had always been present. Essentially it turns out she was happy to come and get paid to watch someone else do the job. She just didn’t want to have to do any work herself. Now I know why she’s had so many jobs!

So, as it stands I am managing as best I can with my one part-time PCA, though she is planning to leave in late October to train as a paramedic; thus posing yet another obstacle.

Having realised how long this post is, I think I will leave it there for today, though there is much more to tell. Suffice to say, the saga continues…

Author: claimes1