Thursday 5th March 2020
My good friend and fellow wheelie wench, Lucy Hudson, is a published author!
As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.
My good friend and fellow wheelie wench, Lucy Hudson, is a published author!
As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.
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.
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!
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…
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.
Lauren West: I have SMA (spinal muscular atrophy) Type 2. I’ve never walked independently and got my first powered wheelchair at the age of two and a half.
Despite the severity of my SMA, I passed my driving test, went to university three hours from home, and moved to London to start my working life. I now still live in London with my partner and with support from live-in PAs who do all my personal care and domestic tasks.
Michaela Hollywood: I have SMA (spinal muscular atrophy) Type 2. I commonly say that I can do pretty much nothing without assistance except speak! Although, I have recently learned to drive using hand controls.
Possibly the biggest impact of my SMA is my breathing and the impact of chest infections, which can make me sick quite often. I’m also deaf, and have pancreatic insufficiency which affects my ability to digest food, and that can cause a lot of pain and fatigue. My motto is; I can drive a van, and boil a kettle but I can’t make a cup of tea!
Emma Vogelmann: I have SMA (spinal muscular atrophy) Type 2. I’m a full-time electric wheelchair-user and since contracting Swine flu in 2009, I also use a portable ventilator via a tracheotomy.
Lauren West: I became involved at the very start of Trailblazers, after I left the Whizz-kidz Kids Board. I felt I had a campaigning void in my life after leaving the board, so I was really excited when I heard about Trailblazers. For a long time, I was the only Welsh Trailblazer and so I formed a great bond with the original team, Bobby and Tanvi.
I stayed involved throughout university through participating in work experience and attending events like APPGs. I was delighted after a few years in different jobs to be offered the role as Campaigns Officer, as I’d always wanted to work for Trailblazers. It was then super exciting to take up the role of Trailblazers Manager at the beginning of 2016.
Michaela Hollywood: I was involved with Trailblazers from the very beginning, before it even started!
I was at a MDUK Family Weekend when I was 16, and, because of my disability and access requirements, I couldn’t book tickets to see the band McFLY perform in my local arena. Consequently, I spoke to the then Chief Executive of the charity Phil Butcher, and said we need a “young people’s forum”. My idea at the time was that those of us with a muscle wasting condition have powerful voices that weren’t being heard, and too many non-disabled adults were making decisions that affected our lives without even thinking of consulting us. And out of that Trailblazers was born!
I volunteered for the first number of years, and directed the organisation from Northern Ireland for a year before it became official. I went to university and did my undergraduate degree in Public Relations, followed by a Masters in PR and Communications, specialising in political lobbying. I then joined the team from home in Northern Ireland a little over 3 years ago.
Emma Vogelmann: I was invited by MDUK to a Parliamentary roundtable meeting about disability employment. I really liked that a prominent charity was directly engaging with young disabled people and their lived experiences. After that, I asked if there were any opportunities to get involved with the organisation which led to a 4 month internship with the Campaigns team. I absolutely loved it, so when the role of Employability Officer was advertised I knew I had to apply. The rest, as they say, is history!
Lauren West: I don’t think I would describe myself as an influential career woman but if I am seen that way, then that’s a real honour.
I think my disability has made me much more determined in all parts of my life, not just my career. I have always been quite driven and even when I wasn’t sure what career path I wanted to follow, I knew I wanted to do something that made a difference.
But I genuinely think there’s been one driving force behind my ambition and that was a social worker who was sorting out my university care package. She made an off-the-cuff comment about how when I was done having fun at university, I’d come home and she’d help set me up on benefits in a little flat. Whilst this is needed for some, this is not how I wanted my life to go, but I knew I’d face similar beliefs and attitudes throughout my whole life. So I was determined to fight against that societal expectation.
Michaela Hollywood: For me, I think it made my education very important. And it’s made me steely and determined. It’s a good advantage to be able to use my voice as communication is so important when your impairment is so physical. I’m proud to be in the position I am, and try to keep my focus on what I can do for others.
Emma Vogelmann: I never really thought of myself as an influential career woman in all honesty. I suppose you just crack on with your day-to-day work, so you never stop to think about it.
Now I am starting to see the impact my work has on other people, such as my employment work. I’ve seen the people involved in my project access jobs, find a careers mentor and so many other meaningful changes. That’s incredibly rewarding for me.
My disability makes me more determined to do a lot of things, but definitely in my career. Someone in a meeting I ran summed it up perfectly, “disabled people feel the pressure to be exceptional just to be considered equal to their able-bodied co-workers”. While this is not the culture at MDUK, I do feel that internal pressure to prove myself constantly. I’ve learned first-hand and from others that it is unfortunately really hard to enter the working world as a disabled person, so once you’re there you feel like you need to show your employer why they made the right decision.
Lauren West: Throughout school and university, getting a typical student job just wasn’t on the cards for me. For one thing, I just didn’t have the stamina to study and work. But also the usual student jobs just weren’t physically accessible to me. I was worried that this lack of work experience would put me at a severe disadvantage for getting a job once I’d graduated.
I was lucky that Trailblazers found me an internship at my local MP’s office, so I did one day a week there for three months in my final year of study. I also did work experience at MDUK which gave me a great taste of living and working in London.
I was incredibly fortunate to secure a job in London prior to graduating from my Master’s degree. However, when this job turned out to not be what I expected and complete with a very abusive boss, I had real trouble finding a new job. I mainly applied to charities and many claimed to be part of the ‘two ticks scheme’ which offered guaranteed interviews for disabled applicants.
However, it was rare I’d even get called for an interview and it took many unhappy months before I was offered a role as a mental health advocate. The same year, I started working for MDUK and I love being part of a charity that values diversity and inclusivity.
I think the only way I’ve overcome challenges within employment is just through stubbornness and determination. I really think there are organisations out there for everyone but it can just take a long time to find the right fit.
Michaela Hollywood: The biggest one is my health. Self-care is important to keep me ticking over. I’ve been really lucky to work for a group I wholeheartedly believe in, and where we see real help and progress happening. I try to make sure others are afforded the same opportunities I have been lucky to have.
Emma Vogelmann: I struggled to find an employer willing to give me a chance after university. Of course, this is true for most graduates. But I do feel that being a disabled graduate made it harder. I remember asking Lauren West for advice before I started working at MDUK about when, where and how to disclose my disability, because I didn’t want to be counted out too soon for jobs, but I also didn’t want to hide something I consider a strength. I decided to always disclose my disability, though this is a very personal choice that isn’t necessarily right for everyone. I work within a disability charity, so it is extremely relevant to say I’m disabled, but I know a lot of people who aren’t comfortable with this and that’s completely okay too.
Lauren West: In terms of in my career, I think it was being in charge of the Trailblazers’ 10 year anniversary celebrations.
As someone who was part of Trailblazers from the start, being able to bring those 10 years together through an incredible event in Parliament was just the best experience. Seeing over 100 people all in one room celebrating their successes of the past 10 years will be forever one of my best moments.
Michaela Hollywood: This is a tough one! My dad, Michael, likes to tell anyone and everyone he meets to “Google” me because he is so proud of what I’ve achieved.
In 2015, I was given a Points of Light award by then Prime Minister David Cameron, and a few weeks later was named on the BBC 100 Influential Women List. I think those few weeks were a definite highlight.
Emma Vogelmann: What a tough question! I suppose it would be winning my case against a taxi driver who discriminated against me due to being a wheelchair-user. It happened on my second day of work at MDUK and it was a difficult experience to go through. But to have two courts agree that wheelchair-users cannot be overcharged was a great feeling. I really hope it will empower other wheelchair-users to not accept discriminatory treatment from taxi drivers.
Daily, we’re bombarded with news stories of sadness, badness and madness.
Sometimes, you just need a little escapism and light-relief to raise a smile. What better way than a Disney villains showdown with the cleverest of clever little wenches, Miss Lucy-Lu Hudson!
So far, we’ve debated our favourite songs and actors. I apologise in advance for Mr Twodoughnuts ~ he’s so very young and uncultured!
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…!
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?!
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.
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!
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.
“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‘.
Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).
Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.
Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.
Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.
These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.
The single mum’s.
Those living with debilitating conditions and struggle to get out of bed each morning.
Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.
Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.
Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!
They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.
So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!
*Names have been changed
Becky, 22, SMA Type 2: “Of course! I have fully functioning sexual organs and like anyone else, I have sexual desires. Having a physical disability, like mine, does not affect either of those.”
Amy, 30, Congenital Muscular Dystrophy: “Yes, most definitely. We all have wants and desires regardless of our physical abilities.”
Sarah, 27, SMA Type 2: “I’ve always felt like a sexual being and desired an intimate relationship. However, throughout my teenage years and thereafter, I didn’t imagine anyone would want that type of relationship with me, so I relied on myself for any sexual needs.”
Laura, 24, Limb Girdle MD: For years I actually didn’t see myself as a sexual being because I hated my body and I truly believed that no one would ever want to be with me. It wasn’t until I reached my twenties and craved intimacy that I actively searched for a sexual partner.
Becky, 22, SMA Type 2: “I would say that my lack of body confidence is the only thing that affects my sex life. From the age of 16, I’ve struggled with social anxiety which stems from the dislike of my body and the way my disability has ‘deformed’ it. I have such a fear of rejection that I have missed many opportunities to start relationships (casual and serious). Therefore, my sex life has been affected. This issue was actually one of the reasons my last relationship ended. I pushed away my partner to the point that he couldn’t deal with my constant queries and need for reassurance. I was a nightmare!”
Amy, 30, Congenital Muscular Dystrophy: “Body confidence issues and insecurities definitely held me back from experimenting sexually. I’ve only had one sexual partner and he is my fiancé of the past 7 years, despite having two previous long-term relationships beforehand.”
Sarah, 27, SMA Type 2: “I have very low body confidence and some days I really hate how I look. But it has never really affected my sex life. I always find the first encounter with someone new quite stressful and it gives me a lot of anxiety at the thought of someone seeing my wonky body. But no guy has ever said anything negative – quite the opposite!
I’m now in a long-term relationship with someone who fully understands my body hang-ups. He’s patiently trying to improve my body confidence and even if I don’t believe it, it’s pretty awesome having someone telling me I’m beautiful at least once a day.”
Becky, 22, SMA Type 2: “All my dating experience has been via online apps. Every date I’ve been on has actually been really positive and I’ve met some nice people. As most girls/guys find, it can be hard to distinguish who is genuine or not when talking to people online, and it can also be hard to figure out their intentions. This can be even harder when a disability is involved, but I choose to disclose my disability in my bio. I only write a short sentence, usually something sassy like, ‘yes, I do use a wheelchair’. I also make sure I show at least one full-body photo. This relieves the anxiety of telling someone and also means that whoever messages me already knows about my disability. However, I do sometimes receive disrespectful or patronising comments but I love challenging them.”
Amy, 30, Congenital Muscular Dystrophy: “Most of my dating experiences have been using online platforms. Coming from a sheltered upbringing, meeting people at bars and clubs just didn’t seem realistic. I actually prefer online dating as it forces potential dates to see the best of you (unlike face-to-face where they often judge you on your disability).
I did go through a rough patch with dating sites, whereby if I mentioned in my profile the fact I am a wheelchair-user, most guys would open with, “Hi, I’m not being a dick but can you still have sex?”
I do believe sex is part of a healthy relationship but when guys put so much emphasis on that and that alone, it leads me to think they all want the same thing. For this reason I stopped disclosing my disability in my profile, and told them only after chatting for some time. Some accused me of leading them on, but to me this suggested they have a major issue with dating someone with a disability.”
Sarah, 27, SMA Type 2: “I’ve been dating a long time. Excitingly, I got my first boyfriend at school (Year 7), and I thought I was winning. It lasted a whole 3 days and we didn’t even get as far as holding hands.
It wasn’t until I moved away to university that I wanted to date, so I started to try online apps. During those 4 years, I only had a handful of dates and none went anywhere – although I did eventually get my first kiss aged 18.
I really started to date when I moved to London. I met all my dates online and I was quite surprised how many people wanted to go out with me. Most didn’t progress beyond the first date, though some were a lot more successful. I did feel vulnerable but that’s normal for anyone meeting someone they’ve talked to over the internet.
I made my disability obvious on my profile. I’m not saying it should be, but it can be a big deal for potential partners, and I didn’t want to waste my time with guys who couldn’t deal with it. My most successful dates never mentioned my disability in messages, it was just accepted.”
Laura, 24, Limb Girdle MD: I never had the confidence to approach guys in a conventional way. And so all my dating experience has been initiated online. It’s somehow easier to get to know people online before meeting in person. That way, they aren’t immediately confronted with my disability (which I think tends to intimidate most able-bodied guys). However, I have always included photos of myself in my wheelchair on dating profiles.
Becky, 22, SMA Type 2: “The most frustrating thing I find is effort. That sounds terrible but when talking to someone new, it takes a while to answer questions they may have and inform them correctly. This then comes with the fear of scaring them away or being rejected because of it.”
Amy, 30, Congenital Muscular Dystrophy: “Not knowing when best to disclose my disability and the anxiety over their reaction. As for the date itself, I worried about them seeing me struggle with something physical as I don’t want to be perceived as weak.”
Laura, 24, Limb Girdle MD: Honestly, the rejection! Online dating can be brutal, particularly for girls in wheelchairs! It takes a lot of determination to pick yourself and try again. But the effort does pay off in the end.”
Becky, 22, SMA Type 2: “In a potential partner I look for someone who is open-minded and doesn’t take life too seriously. Someone who is honest, empathetic and obviously gives good cuddles! I wouldn’t say I actively seek an able-bodied person but dating somebody with a disability as severe as mine obviously adds difficulties.”
Amy, 30, Congenital Muscular Dystrophy: “I’ve always wanted a partner who has some form of disability. I have always valued and sought the emotional support and connection it would offer. It wasn’t until I stopped looking that I found someone who fit the bill completely. It was important to me that I found someone who could understand me.”
Sarah, 27, SMA Type 2: “While I have dated disabled people, my preference was always for someone without a disability. In particular, I didn’t want to date someone with care needs like myself. I think alone time with a partner is really essential and I wouldn’t want to be in a situation where a carer always had to be around.”
Becky, 22, SMA Type 2: “Apart from the typical concerns, I had additional worries. Positioning was the main one. I was worried about discomfort and being considered ‘boring’ due to my physical limitations. I was also concerned that the person I lost my virginity to wouldn’t be patient with me.
I had no idea what positions were possible and so trusting the person to be patient with me was a must. Being vulnerable was also a concern. When I’m in bed, I have no escape, meaning that anyone could easily take advantage of me.”
Amy, 30, Congenital Muscular Dystrophy: “My biggest concerns were not being able to do certain positions without my partner doing most of the work, and being unable to sexually satisfy him due to my muscle weakness.
Now several years on I’ve realised sex is more about creativity and trust, with those two things you can achieve almost all your sexual desires. Plus it isn’t all about intercourse. My only concern remaining is that my partner may one day prefer an able-bodied girl and get tired of thinking outside the box to make certain sexual activities possible.”
Sarah, 27, SMA Type 2: “I think my biggest concern was the uncertainty and not knowing my body’s limitations. I had no idea if I’d be able to get into a good position to have sex. I was also concerned whether I’d find the right person who would be patient enough to work together with me.”
Becky, 22, SMA Type 2: “I would actually say no. For anyone, having sex for the first time is awkward. It’s all new feelings and sensations that no one can prepare for and sharing something intimate and new with someone. The only challenge I had was finding an easy position, due to my lordosis, but I was prepared for that.”
Amy, 30, Congenital Muscular Dystrophy: “It was more awkward purely due to my anxiety over what their reaction would be to my limitations in the bedroom. We didn’t talk beforehand, which I regret as it may have helped me relax, but I was embarrassed by the things I thought I would struggle with regarding intercourse in particular.”
Sarah, 27, SMA Type 2: “It was definitely more challenging and awkward. Looking back, I regret it happening when it did and with who. Despite dating quite a few different people prior to losing my virginity, I didn’t think any guy would want to have sex with me. When he did, I felt like I couldn’t say no because I didn’t think I’d get the opportunity to experience it again. I was lucky though that it was his first time too.
The whole thing was awkward. In an attempt to be romantic, he picked me up off the sofa and carried me to the bedroom but the flat corridors were super tight so he whacked my head on the door a few times. Then my floppy, bendy limbs made it difficult for him to get me undressed. The awkwardness carried on until I was re-dressed and back in my wheelchair.”
Becky, 22, SMA Type 2: “The main one is that I can’t have sex, full stop. On dating apps and on nights out, I am constantly asked if I can have sex. The sad thing is, some people are genuinely shocked when they learn that I can. Another misconception is that sex with a disabled person can be boring. Or that the disabled person is fragile and can be broken. These are both totally inaccurate.”
Amy, 30, Congenital Muscular Dystrophy: “That I am asexual because I’m a wheelchair-user or I have no sensation and therefore there’s nothing in it for me. I AM sexual, I do enjoy sex in a loving relationship (never been a one night stand kind of girl) and I CAN feel!”
Sarah, 27, SMA Type 2: “While online dating, I was often asked if I could have sex. Quite a few people I dated assumed I was paralysed and so I they would question if I had any sensation.”
Becky, 22, SMA Type 2: “I overcome physical limitations by being honest with my partner. I’m always upfront with what I may need help with but also what I don’t need help with. It’s good to talk about challenges that may arise but also not to dwell on them. I sometimes just find it easier to mention things when actually getting into it. Talking and worrying too much can ruin the mood completely.”
Amy, 30, Congenital Muscular Dystrophy: “I did a lot of research into sexual positions for wheelchair-users. This coupled with knowing my own body’s limitations gives me a good sense of my capabilities in bed. In the areas I knew I’d struggle, my adaptive personality takes over and we just get creative using the ceiling track hoist. Oral, mutual masturbation, sensual massages etc are just as satisfying as intercourse.”
Sarah, 27, SMA Type 2: “I think having the right partner is key. If you’re not comfortable with them, it makes overcoming obstacles really difficult. You need to be with someone who you can be fully open with about your desires and that person needs to be willing to work within your limitations.”
Becky, 22, SMA Type 2: “There are some positions I wish I could do that are off-limits. The majority are adaptable but taking the lead would be fun. I can do that to some extent but not completely. Being spontaneous is also something I wish I could do – being able to jump into bed with someone without the whole process of hoisting and undressing. Also, having privacy and secrecy is something I’d like.”
Amy, 30, Congenital Muscular Dystrophy: “I can’t do certain positions unaided because my trunk muscles are too weak for me to be on top. I get frustrated at times with the restrictions of the ceiling hoist. But there are loads of other positions, so I don’t feel I miss out just because 1one or two are not possible.”
Sarah, 27, SMA Type 2: “There’s so much I can’t do, but the main thing I wish I could do isn’t a sexual thing. I really wish I could roll over by myself and give my boyfriend a hug and a kiss in bed without him having to help. In the past, I did feel like I was missing out on things but with the right partner, I don’t anymore. We’re in a really happy and loving relationship and even if I can’t do much in bed we still have a great time!”
Laura, 24, Limb Girdle MD: Obviously, as a full-time wheelchair-user there are things I can’t do, like doggy-style and being on top. But I find that you just have to be creative, have fun and laugh through the awkwardness! I do so wish I could masturbate but I don’t have the strength in my hands.”
Becky, 22, SMA Type 2: “Don’t over-think things. It can be easy to think about all the difficulties you may face or embarrassing moments you may have but don’t let that have a hand in you missing out on sexual relations. On the other hand, make sure you trust whoever you’re intimate with. Even if it’s a one night stand, ask some trigger questions to get an idea of how they will treat you. But honestly, just have fun. Sex is great and everyone deserves to experience it.”
Amy, 30, Congenital Muscular Dystrophy: “Communication is essential. Think outside the box, use props for support and be open-minded. Practice, practice, practice and have fun.”
Sarah, 27, SMA Type 2: “Get used to having to communicate your needs, don’t just expect your partner to guess what you can and can’t do in bed. It’s also important to communicate what your likes and dislikes are. But probably my most important piece of advice is, don’t rush into things. There’s so much pressure on people to lose their virginity that it can make you feel like a loser if you haven’t had sex. It’s not for other people to dictate when the right time is. If someone comes along who wants to have sex with you, don’t do it just because you think you should.”
Becky, 22, SMA Type 2: “My ex and I always struggled to find time alone together, due to the fact I share a room. We had to take advantage whenever possible, especially during the honeymoon period! We had a few spare minutes in my van (an advantage of having tinted windows!) and so I started giving oral as he unbuttoned my shirt. Suddenly he told me that my PA was getting closer and quickly sat in the passenger seat, making sure he was decent. He totally forgot that I couldn’t button my shirt back up until he looked back at me, his eyes wide, as my PA opened the door. He quickly moved in front of me, blocking me from her view as he buttoned me back up. We just pretended that nothing had happened and the PA still doesn’t realise!”
Amy, 30, Congenital Muscular Dystrophy: “My first time was in a hotel room in Birmingham. Little did we know the walls were paper thin and a family with young children were next-door. The following morning, I overheard the parents complain of a couple going at it so loudly the night before, it kept their kids up! I was mortified while my partner thought it was hilarious.”
Sarah, 27, SMA Type 2: “My boyfriend and I were on the sofa watching TV when my PA said she was popping out for a couple of hours. Clearly we wanted to make the most of this time alone. While he could undress me just fine, the re-dressing was slightly challenging. When my PA came back she said, ‘what the hell has happened to you clothes?!’”
Laura, 24, Limb Girdle MD: “Me and my then partner tried to use the hoist so that I could be on top. But as soon as he released the straps, I fell on top of him like a sack of potatoes and squashed him. But we laughed a lot!”
The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.
Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.
1. Kat, please tell us about your disability and how it affects you.
I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.
I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.
SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.
When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.
I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.
2. How did you become a model and what does this mean to you, as a young disabled woman?
I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.
When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.
One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.
I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!
Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.
I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.
I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.
I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.
Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.
Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.
It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.
3. Kat, could you please tell us about your Youtube channel?
I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.
I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.
I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.
I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.
I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.
Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.
I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!
4. You describe yourself as a disability activist. What are the issues that are most important to you?
I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?
I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!
I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!
I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with Fixers UK, where I spoke to sponsors about my film and promoting disability awareness.
Following that, I modelled for the BooHoo ‘All Girls’ campaign to promote diversity in society.
I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.
Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.
Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’.
Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit.
Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies.
She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.
Visit Tricia: www.triciadowning.com
Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…
Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”
“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”
“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”
“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”
“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”
“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”
“I think, so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”
“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”
“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”
Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.
‘Chance of Rain’ by Tricia Downing is now available to buy from Amazon
Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.
It is held on 8th March, every year. Here are a few quotes that resonate with me…
This post comes to you a little late, since I spent Thursday 8th March in hospital having an operation – fun, fun!
I’m now on the mend and planning future blog posts.
What topics would you like me to cover?
If you have any ideas or suggestions, I would be grateful if you would leave a comment.
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, 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.
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 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.
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.
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.
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, 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 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.
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.
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.