Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.
I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.
Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.
So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.
Show your thanks and appreciation for the NHS and those working in health and social care.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
I was born with a rare form of muscular dystrophy, affecting my body and physicality. I have a severe scoliosis (curvature of the spine) which, for various reasons, is not surgically corrected. This causes asymmetry and a shortened torso. Joint contractures mean I am unable to stretch out my arms or legs. Furthermore, the muscle wasting nature of my condition results in extremely thin limbs.
Now 31, I look very different from other women my age. My pixie-sized stature is emphasised by the scoliosis. In place of womanly curves, are unwanted and abnormally crooked humps and bumps. This visible contrast negatively impacts my sense of self and makes me feel odd, weird, and self-conscious.
I love fashion but fashion doesn’t love me
Over the years, I have desperately sought to hide my body with shapeless, baggy clothes. Anything resembling a potato sack is a winner. I live in leggings because jeans are a no-go and frankly, they are the next best thing to pyjamas!
Clothing manufacturers don’t cater for my body since it doesn’t meet standard criteria. Shopping is not an enjoyable experience. It is a frustrating and disappointing struggle to find anything at all to fit, let alone look flattering. Most of the clothes I buy have to be returned which makes me wonder why I bother at all – well, simply because I can’t roll about naked!
Accepting my unique body
Do I love, embrace and celebrate my unique body shape? Hell, no! BUT – I have slowly and gradually learnt to accept it. After all, there’s absolutely nothing I can do to change it. So why stress myself out over something I cannot control.
Exercise isn’t an option for me. I can’t go to the gym and buff-up. And why should I resort to cosmetic surgery? Why put myself through pain, trauma and financial strain simply to conform to societies high and unrealistic standards of beauty? Okay, it might make me feel more confident to look a little more like the average woman. Then again, it might not…
Societal standards of body beautiful
Our perception of body image and beauty is arguably increasingly influenced by social media, particularly Instagram. Heavily airbrushed, edited and filtered selfies are everywhere to be seen. With a smartphone, we can all look like a celeb from a magazine spread!
But this is misleading, unrealistic and unattainable. I can’t relate to the pouty, posers of Instagram. Honestly, can anyone?!
Diverse bodies are sadly under-represented in the media. This is starting to improve but there is still a long way to go before the presence of disabled bodies on our screens becomes mainstream.
Tabi, who has spinal muscular atrophy Type 2 and uses a powered wheelchair, is a 35 year-old musician from New York City. She began singing to exercise her weakened lungs and writes about the physical and social obstacles she faces.
She is already an established performer, having opened the first ever Annual NYC Disability Pride Parade in 2015, followed a year later by her own show, ‘A Concert on Life, Love and Being Different’. In 2017, this show sold out at the Rockwood Music Hall. Tabi has also performed at the Prudential Center and Brooklyn Dodgers stadium.
Her self-penned debut album entitled, ‘I Wrote Life’ covers numerous musical genres and is both uplifting and poignant. With soulful, catchy melodies, this impressive first outing demonstrates artistic skill and authenticity.
The album was produced at Dubway studios by Russell Castiglione, who previously recorded Trey Songz and Norah Jones.
“Producing this album was like helping her tell her story, her struggles, and her achievements to the world and that was very humbling.” ~ Russell Castiglione
It was master engineered by Dave McNair, who has worked on albums by Maroon 5, Cyndi Lauper and the legendary David Bowie !
“Tabi puts her life into her songs. It’s refreshing to hear an artist being so real in their work.” ~ Dave McNair
Tabi is a talented lyricist and storyteller with a distinctive tone and impressive vocal range. The album is a well-crafted, subtle infusion of R&B, rock, folk, jazz, blues, country, and dance, with a notable 90s pop vibe.
Each track is a candid representation of the different elements of her life. Though revealingly autobiographical, it is also highly relatable, owing to universal themes such as love and loss. The songs ‘I Won’t Hide‘ and ‘I Am Able‘ reveal deep insights about falling in love and healing after a broken heart.
The self-penned album is optimistic and motivational, with songs such as ‘Keep Rolling On‘ inspiring strength and hope in the face of adversity.
The title track ‘I Wrote Life‘ recounts a specific childhood memory, which summarises Tabi’s attitude to life…
“I remember as kids the teacher would say, write on the board a word today, so then everyone wrote their favourite thing, and there I was just imagining, how great it would be to live long and happily”
Tabi, who has SMA Type 2, on her debut album, ‘I Wrote Life’
Tabitha ‘Tabi‘ Haly is a 35 year-old singer-songwriter from New York City. She has Spinal Muscular Atrophy Type 2, a progressive condition, causing muscle weakness and contractures.
Tabi cannot walk and therefore uses a powered wheelchair for mobility. She is now unable to use her hands to feed herself and uses voice dictation software. With 24/7 support from “home health aides” and physiotherapy to maintain as much strength as possible, Tabi leads a highly proactive lifestyle.
I recently had the pleasure of talking with Tabi about her music career and debut album entitled, ‘I Wrote Life’, (released January 2019).
Tabi, what and who are your biggest music influences and why?
I grew up listening to classic rock, pop and R&B, but I appreciate all genres. I enjoy catchy, soulful melodies, so that has heavily influenced the songs on my album. I am most inspired by artists who write their own songs because that is what I like to do. I love timeless songs and I feel motivated to write when I hear something that I wish I had written myself. I also admire artists who write about personal experiences.
I love Mariah Carey because she writes songs that touch upon insecurities and feeling like an outcast. She writes about her faith and she has clever lines and an impeccable vocabulary. I also love singer-songwriters such as Anna Nalick, Sara Bareilles, Christina Perri, and Jason Mraz. They write about love and heartbreak, which I can relate to.
I also admire a wide vocal range because it is fun to sing songs that are vocally challenging. That is when my R&B influences come into play. It’s really enjoyable to improvise and jam along. I like to challenge myself in general, so I definitely apply that to my music in terms of the lyrics, melody, and vocal styles.
How would you describe your debut album?
I would describe my album as real and soulful. I allowed myself to be vulnerable to reveal my struggles and hopes regarding my disability, love, and life in general. The different subjects lend to the spectrum of dark and light tones.
My album is also fun, diverse, and uplifting! There are a lot of upbeat, empowering songs. People like to dance to them, and it was definitely a blast recording them.
The album is diverse because it crosses multiple genres including R&B, pop, blues, and reggae. It was difficult to select which songs to put on this debut album. Ultimately I wanted to make sure there was something in there for everybody. The order of the tracks matters to me because it tells a story and hopefully feels like you are being taken on a memorable and moving journey.
How autobiographical is the album, and why was it important to you to write the songs yourself?
This album is my baby! I know people use that term a lot in reference to personal projects, but I intentionally released it on my 35th birthday. At this age, many women, myself included, start to worry if they have not yet had a baby.
SMA presents challenges in every part of my life, but I am highly ambitious and set out to conquer my goals. I haven’t yet had a baby, so until then, this album is my baby. As an artist, it is my portfolio.
This album epitomises all that I have accomplished thus far; buying my own home, getting through college via financial aid and scholarships, having a successful full-time career that allows me to be financially independent, owning my own wheelchair accessible van, volunteering regularly, helping implement change for people with disabilities, writing and managing my music, managing my home health aides, being a motivational speaker, and being able to perform throughout New York City at cafés, bars, church, and schools.
As great as this is, it does cause alot of stress, sweat and tears! So I hope people enjoy the album and heed the message that faith and hard work have afforded me the life I have. This allows me to remain positive and to inspire myself and others.
Is important to you to inspire other disabled people who may have musical aspirations?
It is, especially since we are now at a time where there are so many groundbreaking opportunities. A few years ago, I saw many people with disabilities acting on Broadway, which took my breath away and really inspired me to continue doing what I’m doing. I would love to inspire, or better yet, collaborate with other musicians with disabilities.
During the bridge of my song ‘keep rolling on‘ I sing, “there’s so much left to change, more than we even think. More face in media, presence in arenas”.
Have you faced any opposition, challenges and/or stigma on your journey to becoming a musician, due to your disability?
Surprisingly, the biggest challenge is sometimes getting onto the stage to perform! Most stages are not wheelchair accessible, so I have to be prepared for that. Another major challenge is having less live music venues to choose from because not all of them are wheelchair accessible.
How do you overcome these obstacles?
In the early days, I didn’t want that to be an issue or a dealbreaker when pitching to venues to book a show. So I would have my band members and friends lift me in my wheelchair on and off the stage. I have a powered wheelchair that weighs at least 300 pounds! So that was a lot to ask, and I am thankful for the support. This still happens sometimes, but I am now more confident about asking venues to consider investing in a ramp.
There are still the same challenges surrounding the inaccessibility of venues, both for the performers and attendees. I think this is just one of many accessibility issues that exists and for which we need to implement improvements.
You were the opening performer at the first ever Annual NYC Disability Pride Parade in 2015 to celebrate the ADA’s 25th anniversary. How did that make you feel?
That was such an amazing feeling! I had just started using my wheelchair again after having been stuck in bed for a few months due to ill health. So this experience was a huge comeback and it was an honor to be a part of this event. I have to reflect on this sometimes and remember how privileged I was to perform outside, in front of so many people, during the first parade specifically for people with disabilities.
I would like to thank the lovely Tabi for taking the time to answer my questions. Her brilliant debut album, ‘I Wrote Life’ is available to purchase and download NOW!
Here, I attempt to take her down with my comeback (well, it is a wench war!) Though, I freely admit, I think she’s got this first round in the bag.
Let us know what you think…!
Top 5 Disney Villains
1. Chernabog, Fantasia (1940)
This is without doubt the darkest and most menacing sequence in Disney history. I was only three or four when I first saw Fantasia. I swear, even at that age I thought it was one hell of a trippy film!
The demonic Chernabog (funky name, right?), based on Slavic folklore, is God of the Night. He is the representation of pure evil, with fearsome wings that form the peak of Bald Mountain, which leers ominously over the village below.
As night descends, the delighful Mr Chernabog unleashes hellish realms and summons sinful spirits to watch them dance maniacally. He then throws them into the mountain’s fiery pit before a new day dawns. Well, that’s not nice at all is it!
I’m flipping glad I don’t live in that village!
How is this a kids film, seriously?!
2. Claude Frollo, The Hunchback of Notre Dame (1996)
I was eight when this was released. To this day, it’s one of my Mum’s favourite Disney films. But call me crazy, I think it’s all a bit much for kids of that age, with hard-hitting, mature themes including religion, sin, lust and genocide!
(Sorry folks, there are no happy-clappy, ‘bibbidi bobbidi boo’ moments in The Hunchback of Notre Dame!)
I’ll be honest, it still freaks me out. Not least because of the lack of magical element so typical of animated Disney features. Okay, so there are talking gargoyles, but hey, they needed something to lighten the mood a little!
Frollo, Paris’ Minister of Justice (oh, the irony), is the first Disney villain to attempt infanticide, having almost drowned a newborn, only to be stopped by the archdeacon who accuses the corrupt official of murdering the baby’s innocent gypsy mother. To atone for his sin, Frollo begrudgingly agrees to raise the child as his own. He cruelly names the baby Quasimodo, meaning ‘half-formed’. (Dave would have been a better choice, surely?!)
The manipulative Frollo hides Quasi away in the bell tower, excluding him from society, telling him he will never be accepted by the world due to his unusual physical appearance. What an ass!
Unlike other Disney Villians – often magical and mythical – Frollo the super-creep is so threatening and unnerving because he is such a realistic representation. He is, after all, just a man. A pervy old man (oi, Esmeralda, be mine or you can burn!) fuelled by power, skewed religious motives and a licentious desire for busty babe Esmeralda.
3. Evil Queen, Snow White and the Seven Dwarfs (1937)
She’s the original diva bitch, driven by vanity, and all credit to her, she’s got one hell of a pout going on!
I can’t help but be on the side of the Evil Queen who so easily outwits squeaky-voiced, simple Snowy (never trust a girl who shares a house with seven old men. Methinks she’s not quite as pure as snow!).
Yes, she’s gone to all the effort of transforming into a horrifyingly wretched old wench. But y’know, needs must!
If THAT poked it’s head through your front window and tried to tempt you with a juicy red apple, would you willingly take a bite? Or would you tell the interfering, hook-nosed, eye-bulging wrinkly to buggar off?!
I rest my case. Snowy, it’s your own bloody fault, love!
4. Professor Ratigan, Basil the Great Mouse Detective (1986)
Arch-nemesis to the famous mouse detective Basil of Baker Street, crimimal mastermind Ratigan is a comically ruthless brute. For one thing, he is voiced by horror legend Vincent Price (Michael Jackson’s Thriller, anyone?!).
A status-obsessed professional crime lord, his ultimate ambition is to overthrow the mousey monarch and proclaim himself “supreme ruler of all MOUSEDOM”. Aim high, I say!
Unflinchingly wicked, conniving and with no morals, it is revealed in his singy-songy dance number that he previously drowned widows and orphans. What a pleasant chappy!
Ratigan declares himself to be a “superior mind”, yet is angered when called a rat by intoxicated minion Bartholemew, despite the fact he is indeed a rat. The clue’s in the name, dude!
His extravagantly ostentatious appearance conceals an intimidatingly feral visciousness. Though generally maliciously cheerful, calm and composed, his manacingly savage violence is unleashed in a shocking final showdown with heroic Basil.
5. Mad Madam Mim, The Sword in the Stone (1963)
“I find delight in the gruesome and grim ‘Cause I’m the magnificent, marvelous Mad Madam Mim” ~ A bit morbid there, love!
The eccentric, shape-shifting Mim is a proper tricksy wench witch, and rival to the legendary wizard Merlin. We’re introduced to the purple-haired hag when young Arthur, in the form of a bird, mistakenly flies into her not-so-classy abode. Having declared his alliance to the all-powerful Merlin, Mad Madam Mim attempts to “destroy” the boy. Seems fairly reasonable to me!
For all her arrogance and mischievousness, I can’t help but root for the haggered old biddy. I mean, for one thing, she has purple hair! (I remember, as a young kid, being fascinated with an elderly neighbour who had a purple rinse. Super cool!)
The villainous Mim is LOUD, bat-shit crazy and pessimistic yet playful. A ditzy and deceitful game-player, she repeatedly cackles, “I win, I win” – as do I when defeating Mr twodoughnuts at ‘Blog Wars‘.
A while back, I was invited to write a guest post, by a strange young chappy named Mitch (twodoughnuts). The fool even gave me full access to his blog, including his password!
I was told I could write anything, as long as I didn’t “take the piss”.
Would I?! (Well, yes I seriously considered it for a moment).
Therein started what has been dubbed, by Mitch, ‘Blog Wars’.
I’m a bit of a music freak, and so I chose to share my ‘Top 5 Tunes’. Admittedly, some were thrown in there just to annoy Mr Twodoughnuts.
Let Battle Commence!
Mitch then tried (and failed) to win round #1 with his ‘Top 5 Tunes’ – poor attempt, man!
Now, the war continues as we present our ‘Top 5 Actors’. You can check out Mitch’s picks here.
Though it grieves me to say it, he’s set a pretty high standard on this one. It appears the boy has some taste after all.
1. Tom Hanks
‘Forrest Gump‘! Need I say more? I’ve seen it countless times but it still gets me. With universal appeal and timeless endurance, it’ll make you laugh, cry and wish you had a mate like good ol’ Forrest. Unless you’re Ross (A Life on Wheels) – Another strange boy who is not a fan of this frequently quoted classic. Sort it out, Ross!
“Mama always said, life is like a box of chocolates. You never know what you’re gonna get.” ~ Aint that the truth!
Double Oscar winner Hanks has a lifetime of much-loved films under his belt including, ‘The Green Mile‘ (if you haven’t seen it, check it out), ‘Philadelphia‘, ‘Cast Away‘, ‘Saving Private Ryan‘ (surely the best war film ever made?!), ‘Apollo 13‘, ‘A League of Their Own‘, ‘Toy Story‘, and ‘Big‘ (remember that famous piano scene?)
How can you not love the guy?!
2. Robin Williams
The LEGEND! A comedy genius, Robin Williams proved his worth as a serious actor as well as the go-to funny guy, with an insanely quick wit and animated energy to boot. This versatile entertainer lit up my childhood in cherished films such as ‘Aladdin‘, ‘Jumanji‘, ‘Hook‘ and ‘Mrs Doubtfire‘ – a role no one else could or should ever play. Pray they never try to remake it!
A true scene stealer, Williams had the rare ability to improvise like no other and appeal to any audience of any age.
His dramatic performances in ‘Dead Poets Society’, ‘Patch Adams’, ‘Good Morning, Vietnam’ and ‘Good Will Hunting’ (for which he deservedly won an Oscar – bloody great film!), mark him as an undeniable talent.
3. Matthew McConaughey
Okay, so the dude made some questionable choices throughout the early 2000s, and was somewhat typecast in crappy romantic comedies. But he’s certainly made up for it since, preferring more complex and intense roles such as protagonist ‘Killer Joe’ and troubled homicide detective Rust Cohle in the debut series of ‘True Detective’. If you’re into dark and disturbing, give these two a watch.
He then went on to play a supporting role in Scorsese’s ‘The Wolf of Wall Street’, in which he arguably stole the show from the lovely Leo with that whacky chest thumping scene.
In 2013, the charismatic Texan babe dropped 47lb (21kg) to star as defiant Aids patient Ron Woodroof in the biopic ‘Dallas Buyers Club’. For his brilliantly impressive portrayal, McConaughey won every award going as well as audience and critical acclaim.
4. Joaquin Phoenix
Have you seen ‘Walk the Line’? If not, why not? Even if you know nothing about Country music legend Johnny Cash (shame, shame!) it’s essential viewing if only for Joaquin’s dedicated, hard-knock cool performance.
Some might say method actor Phoenix is an acquired taste, having made some unconventional career choices. But you could never accuse the guy of being boring. He delves deep to create memorable, multi-layered, engaging and often quirky characters.
As Roman emperor Commodus in the epic ‘Gladiator’, Joaquin isn’t just the bad guy to Aussie Crowe’s hero. He’s vulnerable, damaged, desperate and played with sinister subtlety. Few actors his age could have pulled this off so convincingly.
Dark, brooding, intense and yes, a bit weird. I approve!!
5. Morgan Freeman
So, Barack Obama was the first black President of the USA, right? NOPE! It was Morgan Freeman who helped save the planet from being struck by a comet in ‘Deep Impact‘. Now that’s impressive!
He’s the super cool, laid-back veteran icon with a mellifluous and universally recognisable voice. The kind of dude you wouldn’t mess with, even in his latter years, and especially if you’ve seen his award-winning turn in ‘Million Dollar Baby‘, in which he whoops some ass.
For me though, Freeman will always be synonymous with ‘The Shawshank Redemption‘. Tim Robbins took the lead, but that film belongs to Morgan. It’s an effortless and understated performance. If you haven’t seen this film, where have you been? Do you live in a cave?!
So, that’s my Top 5 ~ Who would be on your list?
Most importantly, who do you think wins this round – Me or Mitch??
Following on from Paralympian Jonnie Peacock’s influential appearance on last year’s Strictly Come Dancing, the latest line-up includes Para-triathlete Lauren Steadman and acid attack victim Katie Piper. The former has no lower right arm, and the latter suffered significant facial disfigurement following a violent attack when she was only 24 years of age.
The inclusion of these two young women on such a high-profile BBC One talent show, with viewing figures in excess of 11 million, will no doubt play a big part in the promotion of positive views on disability and diversity, as well as encouraging body confidence.
Katie Piper – Acid attack victim and charity founder
35 year-old TV presenter, author, philanthropist and charity campaigner Katie Piper was left permanently scarred after a vicious acid attack in 2008. The former aspiring model has subsequently undergone over 60 necessary surgical procedures.
The industrial strength sulphuric acid that was thrown in Katie’s face has caused extreme damage and left her with sight, swallowing and breathing issues, requiring ongoing, invasive treatment.
The perpetrator was instructed to carry out the callous attack by an abusive former boyfriend whom Katie had met online.
Over the past decade, Katie has found admirable strength and persevered through the most trying of times. She bravely shared her story in two autobiographies and the 2010 BAFTA winning documentary, ‘Katie: My Beautiful Face’.
Katie has written four more self-help books, fronted several televised shows relating to body disfigurement, and most notably established The Katie Piper Foundation, to support fellow victims of acid attacks. She is also now happily married and has two young daughters.
Katie & Strictly Come Dancing
Prior to being paired with professional Strictly dance partner Gorka Marquez, Katie said, “there was a time not long ago that I wondered if I’d ever be glamorous again and now I know that is going to happen!”.
Katie Piper is all about embracing body confidence and celebrating diversity, whilst raising awareness of the consequences of acid attacks, which is a crime that is sadly on the increase. Her appearance on this hugely popular primetime BBC show will enable her to reach a wider audience and spread that message.
Piper is acknowledged to be the most anxious of this year’s celebrity contestants. Having really struggled to overcome the nerves during her first performance of a Waltz to Adele’s ‘when we were young’, Katie scored 17/40. Her confidence was knocked by negative feedback from the judges, particularly Craig Revel-Horwood who did not hold back.
Katie has since revealed, “it’s funny because like in the first week it did really affect me and it was silly because whenever I would wake up on Sunday at home it was like your 35-years-old and it’s an entertainment show, calm down.”
Katie and Gorka received their lowest score when they returned the following week with a Paso Doble. The choreography was intended to reflect the motto of the song to which they danced; ‘confident’ by Demi Lovato. However, Katie was visibly close to tears upon hearing the judges comments. While Darcy attempted to focus on the positive attitude with which Katie possessed, the others described her as “Stompy”, “plank-ish” and in need of improvement.
Nevertheless, the couple were supported by the viewing public and voted through to week three, and thankfully so, since their Foxtrot earned them 22 points – their highest score.
Katie says, “by week four I was in the groove, laughing and enjoying it and it was okay. You go in the green room afterwards and the [judges] are just normal, nice people.”
Sadly a Jive was to be Katie’s last dance on Strictly. Though disappointed to leave the competition relatively early, Piper admits though she overcame her nerves, insecurities and improved whilst on the show, she is not a natural dancer, and wouldn’t have wanted to be patronised or pitied.
Lauren Steadman – Paralympian
26 year-old Paralympian Lauren Steadman, originally from Peterborough, was born without a lower right arm. However, this has never prevented the determined sporting star from pursuing her dreams.
This Elite Para-triathlete is already a Double World Champion, Paralympic silver medallist (Rio 2016 – Women’s PT4) and six times European Champion.
Encouraged by her uncle who was himself a triathlete, she began competing in her local swimming team from age 11, representing Team GB. Two years later, Steadman took part in her first international competition in Denmark, as well as the 2008 Beijing Paralympic Games. Intent on pushing the boundaries of possibility even further, she switched sports, from swimming to the triathlon, after the London Paralympic Games in 2012.
Alongside her demanding athletics career, Lauren has pursued academics and achieved a first-class Psychology degree in 2014, followed by a Master’s in Business and Management.
Lauren recalls, “In one year I had taken all three titles – British, European and World Champion – for the first time, and graduated from university with first class honours. It really couldn’t get much better than that!”.
Lauren & Strictly Come Dancing
Lauren signed up to appear on the latest series of Strictly Come Dancing as she wanted to set herself a new challenge, learn another skill and test her “own levels of uncomfortableness”. When asked what she was most excited about she replied, “pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me”.
With no experience whatsoever, Steadman claims her friends and family would describe her amateur dancing style as that of a baby elephant!
The glitz and glamour of Strictly is indeed a stark contrast to her sporting life. Not only that, dance itself is a very different discipline to what she is used to as an athlete. Dancing requires fluidity, expression, emotion and creativity, rather than the rigidity and stern focus necessary for triathlon events.
Despite all the odds, Lauren and partner AJ Pritchard stepped out with an impressive Waltz in the opening week of the show, scoring 25/40 from the four judges. The couple dropped 3 points with their second dance; a Charleston, and were awarded 20/40 for their slightly awkward Cha Cha Cha in week three. However, they returned on top form the following Saturday with an elegant Quickstep, earning them 25 points.
Their latest performance marks a first in Strictly history – a Contemporary dance, newly categorized as the ‘couple’s choice’. It was a highly personal interpretation with choreography designed to represent Lauren’s personal journey, her defiance and disability. The emotional dance was awarded with a standing ovation from the studio audience and 24 points from the judges.
Lauren has chosen not to wear a prosthesis during her time on Strictly. Preferring that her disability remain visible, she is keen to break down barriers, challenge convention and encourage other disabled people by demonstrating how dance can be adapted to suit different bodies and abilities.
For Lauren, the rollercoaster Strictly journey continues…
Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.
Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.
Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.
1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?
I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.
2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?
My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!
It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.
3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?
Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.
4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?
5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?
Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”
I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!
6. Has your attitude to disability, your own in particular, changed over time?
Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.
7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.
Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.
I would like to thank Shane for taking the time answer my questions.