Disability & Self Worth | You are not unloveable

I think most people living with a chronic illness, disability or mental health issue can relate to this quote, at least to some extent. I know I do.

I am limited by my physical disability (congenital muscular dystrophy), despite the claims by some that you can do anything if you just try hard enough. As a non-ambulatory wheelchair-user with a muscle-wasting condition, I’m afraid there are certain things I cannot do.

I am heavily reliant on others to carry out daily activities such as cooking, cleaning, locking doors, opening and closing windows and so on. I also need help with personal care tasks like getting in and out of bed, dressing and bathing. This can be undignified, thus affecting my confidence and making me feel incredibly self-conscious and utterly undesirable. After all, who wants their boyfriend to shower them?!

I HATE asking people to do things for me, as I then feel a burden, a nuisance, an annoyance. Having to ask people to simply open a bottle or a can at the grand old age of 30 is frankly embarrassing (for me).

Sometimes I refuse to speak up and request help. Call it pride or sheer stubbornness. But there are other times I have no choice. Like it or not, I have to ask, to instruct, to explain.

For the most part, I’ve managed to conceal the extent of my disability from those around me. Many people, friends included, think I am much more able and independent than I actually am. Again, put it down to pride. But there are some people I can’t hide this from. Family members, of course, but also anyone I am romantically involved with.

Due to the nature of my disability and all the added extras – care requirements, dependency, restrictions, the inability to be spontaneous – I always believed myself to be undeserving of love. I genuinely thought *think* of myself as an unnecessary burden. Why would anyone put up with me, my weak, crooked body and all of my baggage when they could choose to be with someone else?

As a result of this and a lifetime of rejection, I put up barriers and distanced myself from society; a form of self preservation. Being told repeatedly that I’m not good enough, I’m “no one’s type”, and “too much to take on” has made quite a negative impression on my self-esteem.

Now, I don’t want to ramble or get too personal. But I am slowly starting to trust and believe I am worthy of love and companionship.

They say there’s someone for everyone. The cynical part of me still questions this. But maybe, just maybe, there is.

It takes an extra special person to accept me and my care needs. To take on, without question, a pretty drastic lifestyle change. To see past the wheelchair, the crooked body, the medical equipment and the disability itself, and simply love me for me, unconditionally. To try to convince me every day that I’m not undesirable, unloveable or a burden. People like this are rare, but they are out there!

Mobility Product Review: Bellavita Bath Lift

I was recently contacted by the team at ManageAtHome, an online Medequip retailer providing mobility aids and equipment.

They kindly sent me the Bellavita Recliner Bath Lift to try out and review.

The Bellavita Recliner Bath Lift ~ A side view

About Me

I’m a 30 year-old woman with Ullrich congenital muscular dystrophy. Consequently, I am a non-ambulatory wheelchair-user. I can’t use a regular bath or shower, and therefore need to make adaptations and use appropriate mobility equipment.

Bath vs Shower

Generally speaking, most disabled people, particularly wheelchair-users, prefer a level-access shower room to a bath. Personally, I’ve always loved to sit and soak in the bath. I find it relaxing and therapeutic as it helps to ease any tension in my muscles. So, for the past 20 years, I have used various bath lifts, including the Aquatec Orca Bath Lift.

Bellavita Recliner Bath Lift

The Bellavita Recliner Bath Lift in-situ

The Bellavita is quick and easy to assemble. Compared to other bath lifts, it is much lighter in weight (9.3 kg) and therefore easier to remove from the bath for cleaning and travel. This does not make it any less sturdy than other similar models, and can support users of up to 140 kg/22 stone.

I was impressed by the sleek, compact design which is both aesthetically pleasing and practical. It is certainly less bulky than other reclining bath lifts I have tried, thereby freeing up more space in the bath to stretch out.

The side guards are detachable for user preference. This does not affect the function or stability of the bath lift.

Bellavita Bath Lift

The overall length of the Bellavita is only 57 cm – much shorter than most other bath lifts. For me, this is definitely a big advantage and something I look for. The fact that it is so comparatively small, lightweight, easy to remove and install means that it can be folded up and stored away if necessary and transported in smaller vehicles.

The entire chair, including the easy-to-use hand controller is fully waterproof. The buttons are large, brightly coloured, and easy to press, even for those with very little strength.

The easy-to-use lightweight hand controller with brightly coloured press buttons

The Bellavita includes a non-slip, comfortable seat cover in either blue (as seen in my photos) or white, which is wipe clean and effortlessly removed.

The Bellavita partly lowered into the bath

It is recommended to charge the Bellavita Bath Lift after every use, though I find once a week is enough.

Back view of the Bellavita

As the name suggests, the Bellavita Recliner Bath Lift reclines! Though some other bath lifts claim to do this, the Bellavita reclines to 50°. As a result, you feel like you’re able to make full use of the bath rather than being restricted.

One of the biggest advantages of this particular bath lift is that it is the lowest available! The seat, when fully lowered, is only 6cm from the base of the bath, meaning that you feel fully submerged and ultimately use less water to fill the bath.

I would definitely recommend the Bellavita Recliner Bath Lift to anyone with impaired mobility who still wants to enjoy the luxury of a bath.

The team at ManageAtHome have been fantastic ~ extremely professional, supportive, friendly and efficient. Check out their website to view the full range of products available!

Follow ManageAtHome on Twitter


Disclaimer:

ManageAtHome provided the Bellavita Recliner Bath Lift in exchange for a fair and honest review. All opinions are my own.

Album Review | Tabi ‘I Wrote Life’

I recently had the pleasure of interviewing singer-songwriter and disability activist Tabitha “Tabi” Haly, who, like me, lives with a form of muscular dystrophy.
Tabi performing songs from her debut album
You can read my interview with Tabi here!

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

Track listing for the album ‘I Wrote Life’ by Tabi

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”

‘I Wrote Life’ is available NOW at Amazon and Spotify

Tabi with a framed album disc

www.tabinyc.com

Theatre Review | Birmingham Hippodrome

On Friday 5th April, I attended an evening performance of Les Miserables at the Birmingham Hippodrome. Over the years, I’ve seen several different shows at this theatre, and have always been impressed with their accessibility.

I am a non-ambulatory wheelchair-user, and so my primary focus is wheelchair access. However, the Birmingham Hippodrome is continually making improvements in order to be more inclusive and cater for all disabilities.

Tickets and Les Miserables theatre programme.

Accessibility at Birmingham Hippodrome

Booking & Parking

We all know how difficult it can be to book tickets for shows and concerts when you have a disability. But I can honestly say, I’ve never had a problem booking wheelchair-accessible seating at the Birmingham Hippodrome. I’ve never had to dial the booking line the minute tickets go on sale, which is often the case for other venues, and there’s even a choice of where to sit!

The Arcadian is a manned carpark situated just around the corner from the Hippodrome. It offers sufficient disabled bays and cost £7:50 for the duration of our stay (around 4 hours). This is Birmingham – parking aint cheap!

Wheelchair Access ☆☆☆☆

The Birmingham Hippodrome, refurbished in 2000, is easily accessed via the main entrance. There are multiple double doors as well as an automatic door, with security staff always on hand to assist if required.

The main front entrance of the Birmingham Hippodrome – fully accessible to all.

There is then a wide, gradual ramp to the right of the central stairway. This leads to two large glass lifts/elevators. Again, there’s always multiple members of friendly staff available to assist with doors, directions and the operating of the lifts.

The main entrance from inside the Birmingham Hippodrome.
Inside the Hipppdrome – multiple levels accessed via stairs and two glass lifts/elevators

We sat on one of two raised platform areas at the back of the Stalls (lower level), known as the Lounge. Despite being at the very back of the audience, we had a great view of the stage, and since we were elevated, we didn’t have to head-dodge!

There was also plenty of leg room and space for multiple wheelchairs, so it was very comfy.

Seating plan showing the accessible Lounge area at the rear of the Stalls (lower level).
Our view of the stage from the Lounge seating area.

There are multiple accessible toilets, all of which are clean, spacious and impressively well-maintained. They even smell good! From my point-of-view, the only thing lacking in this department is the addition of a Changing Places facility, which would no doubt be a huge asset. For this reason alone, I had to deduct a star from my rating.

In 2018, the theatre made a conscious effort to be all-inclusive by installing gender neutral toilets.

Gender neutral toilets

“The theatre offers a programme of signed, audio described and captioned performances. Touch tours have been introduced, so blind and visually impaired can familiarise themselves with the props and scenery before attending a performance and assistance dogs can be accommodated with care being provided for the dog during each act.” ~ Birmingham Hippodrome website

Click here for a full accessibility guide, provided by AccessAble

Les Miserables ~ The Show ☆☆☆☆☆

The current touring cast of Les Miserables

I had already seen the 2012 film starring Hugh Jackman and Anne Hathaway, and was therefore familiar with the songs and storyline. But honestly, there is no comparison!

Now, I’m generally a fan of Russell Crowe, but as Javert he was total crap. The guy who played the same role in the theatre production puts old Russ’ to shame! Man, what a voice.

The entire cast was brilliant, with no weak links. How they maintain such a high quality performance, night after night, demonstrates the talent and professionalism of each individual.

Warning: Spoilers..!

All credit too, to the costumers and production design. Particularly impressive were the ensemble scenes at the barricades, and the moment Javert meets his watery end.

For me the highlight was the solo performance of Bring him home by protagonist Jean Valjean (played by Hugh Jackman in the film version). NOTE PERFECT!

If musical theatre is your thing, go and check out Les Miserables!

Les Miserables balloons at the Birmingham Hippodrome

NAIDEX 2019

So, this year I managed to make it to the first day of Naidex, having last visited over a decade ago!

For those of you who aren’t familiar, Naidex is Europe’s biggest trade, professional and public exhibition for all things disability and independent living.

Fortunately for me, it is hosted fairly locally at the Birmingham NEC, which is around an hour’s drive from where I live.

First thing’s first, I was pleasantly surprised to find that disabled parking was free – winner, winner! For all other events attended at the NEC, the parking charge is a hefty £10.

I’ll be honest, my main reason for visiting Naidex 45 was to meetup with a few friends, including fellow #MDBloggersCrew member, Fi Anderson.

Fi Anderson outside the Changing Places facility, at Birmingham’s NEC
Happy to see a Changing Places facility at Birmingham’s NEC!

Together we did a few laps of the place, trying our best not to bump into people. In fact, within the first 10 minutes of arrival, some bloke cleverly decided to walk backwards and very nearly fell on top of me. Thankfully he was young and not unattractive, so I didn’t mind so much.

It was a challenge to navigate the crowds, making it difficult to approach people and stop to chat. I spotted a few familiar faces but was only able to talk to a few, unfortunately. I did manage to briefly catch up with Mr twodoughnuts, though he wasn’t overly impressed with his first experience of Naidex. I have to say, I agree with his assessment!

For those of you planning to attend Naidex in the future, I would advise pre-planning your route as it’s tricky to locate specific stalls amongst the crowds and chaos!

As disorganised as it was, I was gutted that I couldn’t be there for the second and final day, purely because my mate SimplyEmma was judging on the Changing Lives Award panel!

SimplyEmma (far right) judging on the Changing Lives Award panel at Naidex 45

Would I go again?

Honestly, it depends who’s going! It’s a good excuse to meetup with friends and fellow disability bloggers from all over the UK. And, it would be nice to represent the #MDBloggersCrew (properly) at some point. But otherwise, it wasn’t really my cuppa.

Just a few magazines, leaflets and flyers collected at Naidex 45

If you attended Naidex 45, let me know what you thought by leaving a comment! 

Ableds Are Weird!?

The recent trending Twitter hashtag #AbledsAreWeird, created by disability activist Crutches&Spice, has got me thinking about my own encounters and interactions with able-bodied society.

Uncomfortable? Awkward? Frustrating? Yup!

Here are some examples of my experiences as a non-ambulatory wheelchair-user (with Ullrich Congenital Muscular Dystrophy). I’m sure they are not unique to me!

Let me know if you can relate to any of the following scenarios…


Accessibility

Stranger: There’s only a few steps.
Me: I can’t walk, hence the chair.
Stranger: They’re only small steps.
Me: Nope, still can’t walk I’m afraid.
Stranger: Oh, not even with assistance?
Me: Not even with assistance.
Stranger: Not even a little bit?
Me: Not even a little bit.
Stranger: Not at all?
Me: Not at all.

Awkward, deafening silence…

Stranger: There are steps but we can just lift you (in a powered wheelchair).
Me: Thanks but this chair is really heavy. There’s no way you’ll lift it.

Stranger then attempts to lift me in my wheelchair, only to complain of the weight.

Stuck in a long queue of fit, young able-bods who look me up and down (in my wheelchair) but still choose to wait for the one and only lift/elevator rather than take the stairs, which would be much quicker!

A young driver in flashy sports car races into a blue badge bay and gets out without displaying a badge.
Me: Excuse me, have you got a blue badge?
Driver: No! Have YOU?!
Me: YEP! (waving my blue badge at the driver while sat in my Motability WAV).

Being unable to access public disabled toilets because they’re being used for storage!

Entering a public disabled toilet after a mother and baby have just used it. It absolutely stinks and there are used nappies on the floor!

Online Dating

Guy: okay, can I be honest?
Me: yes.
Guy: let’s be real, you’re no one’s type. Are you!
Me: erm, thanks!

Me: I can’t walk. I have something called muscular dystrophy.
Guy: oh. Right. Okay…
Me: yup…
Guy: so is that something you could change if you work on your fitness?
Me: no. Afraid not.
Guy: not even if you try really hard and actually make an effort?

Me: I’m a wheelchair-user.
Guy: oh right, what’s wrong with you? You self-propel, yeah?
Me: no I can’t do that, and there’s nothing wrong with me.
Guy: but I’ve seen some really fit girls in wheelchairs. They play basketball and all sorts!
Me: yeah, that’s never gonna be me. Sorry.

Me: I’m a wheelchair-user. I can’t walk at all.
Guy: oh, okay. What happened?
Me: nothing happened. I have something called muscular dystrophy.
Guy: I just Googled it. Wow that really is a disease isn’t it!!
Me: fear not, it isn’t contagious.

Guy: oh, so you can’t walk at all?
Me: yeah that’s right, I have muscular dystrophy so I can’t weight-bear. I use a powered wheelchair.
Guy: okay….
Me: it’s fine if you want to ask questions.
Guy: so…you don’t have sex then??
Me: why’s that?
Guy: well, I’m guessing you can’t feel anything…you know.

Woman: aww, I’m sure you’ll find a nice guy in a wheelchair to date!
Me: or just a nice guy!?

Social Worker Review

Assessor: are you able to make your own decisions?
Me: yes.
Assessor: always?
Me: yes.
Assessor: (with a sceptical expression) but…if you needed advice when making a decision, who would you ask?
Me: myself!?

Socialising

Stranger, whilst leaning over, “It’s good to see you getting out and about”

At a restaurant with a group of friends, all of whom are able-bodied. Waiter comes to our table, looks at me in my wheelchair, and starts rambling about a friend of his who lives near a Paralympian. None of us know quite how to respond.

At the pub with a friend who goes to the bar to get us drinks. When she returns, she says a guy at the bar who she knows told her he didn’t realise she’s now a carer. She had to stop and think for a moment and then replied, “I’m not her carer. I’m her friend! We’ve known each other almost 20 years!”
The guy looked absolutely dumbfounded.

Driving & Mobility

“Wow, you learned to drive? Is that safe? Did you have a special instructor and a special test?”

“Your wheelchair’s a bit battered. Looks like you could do with a new one! I suppose you just call and get a replacement through the NHS?”

“Do you have to have training and a test to drive that thing? [my powered wheelchair]”

“They [wheelchairs] cost HOW MUCH?! Why are they so expensive? Can’t you just save up?”

University

“Oh, you went to university? Good for you! It’s something for you to do, isn’t it. How did you manage though?”


You may also like Life as a Wheelchair-user | Societal Preconceptions

Wheeling Through Life | A Brief History

Highlighting the Ability in DisAbility

Wench Wars | Disney Villains

1, 2, 3, 4, I declare a WENCH WAR!!

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!

I’m already battling it out with fellow MD’er, Mitch (twodoughnuts) in a series of ‘Top 5’ blog posts. So far, we’ve debated our favourite songs and actors. I apologise in advance for Mr twodoughnuts ~ he’s so very young and uncultured!

Mitch’s Top 5 Songs (bleurgh!)

My Top 5 Songs (yay!)

Mitch’s Top 5 Actors (meh)

My Top 5 Actors (fine choices, indeed!)


So, my wise wench of a friend, Lucy, kicked things off with her pick of the Top 5 Disney villains (damn, she’s good!)

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!)

From Disney’s ‘Cinderella’

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‘.


Thanks for reading!

Valentine’s Special: Part 2

Dating & Disability ~ Q&A

Four men with different forms of muscular dystrophy answer questions on body confidence, dating, sex and relationships…

*Names have been changed

1. Do you identify as a sexual being?

Dave, 38, Duchenne MD: “I absolutely identify as a sexual being. I actually have a very high sex drive and it’s an important driver in my life.”

Brian, 51, SMA: “Absolutely. I’ve always had what would be considered relatively high sex drive.”

Tom, 27, Unspecified Neuromuscular: “I wouldn’t describe myself as asexual, but I’m not a sexual being either really. The more my condition has progressed, the less sexual I’ve felt. Procedures like catheterisation and serious illnesses have made me feel like I’m not at home in my skin.”

Steve, 28, Duchenne MD: “I believe I’m a very sexual person because I get the cravings and intense visual thoughts that consume my mind.”

2. How does your body confidence (or lack of) affect your sex life?

Dave, 38, Duchenne MD: “My body confidence is quite good. I am aware of my limitations and the ways in which I don’t conform to the normal stereotype, but it doesn’t really bother me and I don’t think it restricts my sex life. Attraction is a very strange thing and you never know what others will find attractive. I’m sure some people will be turned off by my body, but equally someone will be turned on by certain aspects.”

Brian, 51, SMA: “It affected me more when I was younger. In fact, I remember one of the very first moments I realised I was different. On a family holiday whilst in my early teens, I was getting changed in the hotel room before going out for dinner. I saw my profile in the bedroom mirror and realised my body was not ‘typical’ – the scoliosis of my back and the thinness of my legs. This led to a lot of problems with body confidence, which I covered up with layers of fashion. It probably led to overcompensation with cultivating a colourful personality.”

Tom, 27, Unspecified Neuromuscular: “My body, especially naked, looks ‘weird’, which makes me self-conscious. I then feel less comfortable having sex because I’m aware of this. I prefer to be the clothed partner in general, because I fear losing control. I worry about things like unexpected bodily fluids. This makes me unable to relax and enjoy having sex.”

Steve, 28, Duchenne MD: “My body confidence doesn’t have anything to do with my sex life but I’m not confident about my body whatsoever.”

3. Have you tried online dating? What are your biggest concerns/challenges when it comes to dating? Do you disclose your disability?

Dave, 38, Duchenne MD: “I have tried online dating on and off, with a little success but mostly rejection. Every so often I would go through a period of giving up on ever finding anyone, but now I’m in a relationship. I’ve always been very upfront and open about my disability from the very beginning. It’s either going to be a problem for people or it isn’t. I don’t see the point of waiting to find out. Yes, that means I’ve had less interest, but at least I know when the interest is there it’s genuine and not going to disappear.”

Brian, 51, SMA: “I’ve dated using online methods and people I’ve met spontaneously. Being a heterosexual man, I don’t really have a type as such. I am interested in creative, intelligent and funny people. I am on my 2nd marriage and we’ve been together for 12 years. When I was younger, dating always felt more like a job interview than an enjoyable experience. I’ve been stood up, ignored and even worse. It was when I decided to change my attitude towards dating that I began to have more success. I tried to see it as a night out and an opportunity to get to know an interesting person with no expectations.”

Tom, 27, Unspecified Neuromuscular: “My wheelchair is a bit of a giveaway! I do have the conversation with potential partners about the ways illness affects me. I’ve tried online dating apps without much success. I’ve had the best luck with finding people online, becoming friends and then dating them. I worry that people would see me and think I’m not a long-term option because of my disability.”

Steve, 28, Duchenne MD: “My dating experiences have been heartbreaking and abusive. All the women I’ve dated in the past have taken advantage and cheated on me, all from meeting online. Dating online is horrible in my opinion because of the bad experiences that I’ve had.”

4. What frustrates you most about dating?

Dave, 38, Duchenne MD: “Having to take a leap of faith and share aspects of your life that are complicated, with someone that you barely know. It’s a big issue building trust with someone and I hate having to start from the beginning and get them used to what my life is like. With a disability like mine you can’t introduce it gradually. It’s a permanent feature of my life from day one. I also don’t like having to negotiate how to manage with carers when on a date, I usually have to discuss this with the person in advance. It’s a lot to deal with at an early stage.”

Brian, 51, SMA: “I hated the Darwinian nature of dating. A lot of potential dates would say one thing but then date a guy who was 6 foot 2 with an IQ of a house brick. Dating when you are disabled takes stubborn, single-minded determination and the motivation to press on is not always easy to find.”

Tom, 27, Unspecified Neuromuscular: “People play games. If you’re not interested in me because I’m disabled that’s fine – I’m tough enough to hear that – but I find it hard when people equivocate.”

Steve, 28, Duchenne MD: “A lot of women are not genuine, sincere, or empathetic. They have ulterior motives that make them selfish and heartless. Most of them don’t have any morality.”

5. What do you look for in a potential partner? Do you actively seek an able-bodied/disabled partner/someone with a similar disability to your own?

Dave, 38, Duchenne MD: “I do place some importance on looks – I have to feel physically attracted to them, and it is important to me that we can have sex. Because of my own limitations, that means the other person needs to be ‘able’ enough to compensate (recognising that I wont know whether they are until I ask someone). I do appreciate the irony of the discrimination, but this is purely a practical consideration! Beyond that, it’s all about personality. They have to be relaxed about the complexities of life, fun, and intelligent.”

Brian, 51, SMA: “I’ve dated both disabled and able-bodied women, and I’m sad to say I have faced as much prejudice from the disabled women as the able-bodied. I seem to be largely attracted to independent, strong, creative women with a sense of humour that matches my own. Body type is almost irrelevant.”

Tom, 27, Unspecified Neuromuscular: “I don’t actively seek out disabled or abled partners. The advantage of a disabled partner is them understanding where I’m coming from and us connecting on a level where we share these experiences. The advantage of a non-disabled partner would be their potential ability to help with hoisting me, which would enable us to do a lot more together than if we were reliant on PAs (personal assistants/carers).”

Steve, 28, Duchenne MD: “I don’t really have a preference. I look for women who are positive, upbeat and have similar interests to me. Whether they are physically disabled or not doesn’t matter to me.”

6. What were/are your biggest concerns prior to losing your virginity?

Dave, 38, Duchenne MD: “My biggest concern was doing it ‘right’ and not being embarrassed.”

Brian, 51, SMA: “My concerns before losing my virginity were always physically based. I was concerned that my shortening ligaments would mean I wouldn’t be able to physically have sex. I was concerned about the emotional effect on an able-bodied partner being with someone with a shortened lifespan.”

Tom, 27, Unspecified Neuromuscular: “Pregnancy, I guess. Disability didn’t really play into it much back then, but I was still ambulant at the time. I was using crutches and needed some support, but was a lot less reliant on a partner adapting the sex to my abilities.”

Steve, 28, Duchenne MD: “I was afraid I wouldn’t be able to satisfy her and would therefore be a disappointment.”

7. Do you think your first sexual experience was more challenging/awkward purely because of your disability?

Dave, 38, Duchenne MD: “No, I think it was awkward because it was my first time and I was a teenager. I think it helps that I was with someone else with a disability, and my own limitations were not as great back then.”

Brian, 51, SMA: “My first sexual experience was with a girl who had the condition Friedreich ataxia. Therefore neither my disability or hers was of much concern from a self-confidence point of view. It was more the logistics of finding a position that worked. There were a couple of occasions where she almost ended up stuck on the floor, naked with her legs straight up in the air after to try to transfer from her chair onto my bed by herself!”

Tom, 27, Unspecified Neuromuscular: “Not really, but my condition was far less progressed then.”

Steve, 28, Duchenne MD: “I was worried about my physical limitations and that made me more nervous than I probably would have been ordinarily. It was all over very quickly. I did not have fun. She called me prick and left, never to be seen again. So I don’t think she had fun either.”

8. What are the most common misconceptions you have faced?

Dave, 38, Duchenne MD: “I don’t really encounter many because I include in my profile that everything works in that department. It’s a bit disappointing to feel I have to do that. Sometimes people ask what I can do and I tend to answer quite frankly. I don’t really leave much room for assumptions.

One issue discussed in the disability community is that of devotees. I’ve had a mixed experience. Some are only interested in getting themselves off and see the disability as a fetish. But other devotees are simply attracted to you as a disabled person, in the same way that someone might be attracted to tall people. The important thing for me is to recognise that different people are attracted to different things. It is only a problem when that attraction is the only thing that interests someone about you, or becomes an obsession. My suggestion is to be careful but open-minded, in order to open up new and amazing experiences.”

Brian, 51, SMA: “The most common misconception would be amongst able-bodied women not realising I’m a sexual animal. They would then be shocked when I started flirting outrageously with them.”

Tom, 27, Unspecified Neuromuscular: “People assume that I’m willing to be their ‘try it and see’, or that I don’t have needs, preferences, or desires in bed because (from their perspective) I’m so desperate, I’d take whatever I can get. Alternatively, it just doesn’t cross their minds that no matter how hard I flirt, they fail to realise I’m hinting at us getting together.”

Steve, 28, Duchenne MD: “People have asked if I’m able to get an erection. I think many believe disabled people are asexual and incapable of having any sexual desire. But in reality that desire for me is extremely intense. Sometimes uncontrollable.”

9. When having sex, how do you overcome the physical limitations associated with your disability?

Dave, 38, Duchenne MD: “Largely by depending on my partner to do a lot of the movement, and to assist in moving me into the position that works for us. We have had to experiment with different positions that maximise the amount of mobility I have, and try different toys to make things a bit interesting. I use a mouthpiece ventilator so I can still kiss my partner.”

Brian, 51, SMA: “Imagination, open-mindedness and being as sexually generous as I can. Occasionally, technology helps with the periodic introduction of a sex toy.”

Tom, 27, Unspecified Neuromuscular: “I tend to remain clothed, be the active partner, and do things for the person I’m having sex with. I don’t feel comfortable expressing my own needs, desires, or preferences at all. My limitations are more psychological. In terms of paralysis and joint instability, we use a LOT of pillows jammed round me to support me in the right place, then I stay still, and my partner moves around me.”

Steve, 28, Duchenne MD: “Trial and error mostly. Where there’s a will, there’s a way! It’s fun to experiment with toys and household items too.”

10. In terms of sexual intercourse, what can’t you do that you wish you could?

Dave, 38, Duchenne MD: “There is quite a bit I cannot do that I would like to, such as being able to touch my partner without having to be moved in a specific way. I’ve managed to try everything although there are certain things like anal sex that we are yet to find a good position for. We are still working on that one!”

Brian, 51, SMA: “In terms of intercourse, I wish more positions were available to me as variety is the spice of life after all. The use of my hoist helps greatly and opens up positions I otherwise wouldn’t be able to reach.”

Tom, 27, Unspecified Neuromuscular: “I wish I could have easy sex, without loads of explanation and preparation – that would allow me to have a far more normal and enjoyable sex life.”

Steve, 28, Duchenne MD: “I wish I could do the ’69’ position – that looks fun! And penetrate her when she’s in a doggy style position. I’m only missing out a little bit though.”

11. What advice would you offer to other disabled people who are sexually inexperienced?

Dave, 38, Duchenne MD: “It’s really about finding out what you can do and building trust and communication with your partner. Experiment with everything and don’t let things go stale. Keep trying new things, new methods and techniques.”

Brian, 51, SMA: “Decide what you want, don’t put too much pressure on yourself, be stubborn and tenacious. Cast your net wide and use the assets you feel you do have such as compassion intelligence humour.”

Tom, 27, Unspecified Neuromuscular: “Get to know your body first. Learn to pleasure yourself, learn what you like and how you like it. Experiment with toys if you can – they can often substitute for grip and reach. The better you know your body the more likely you are to get what you want out of sex.”

Steve, 28, Duchenne MD: “Don’t get your hopes up! sex is over-hyped. To be honest, I prefer to play video games.”

13. Are there any particularly funny sexual episodes you’d like to share?

Dave, 38, Duchenne MD: “There have been a couple of times a PA (personal assistant/carer) has walked in at a terribly unfortunate moment when I am with a partner. I think sometimes they are just a little naive as to what we might be doing and knock and enter rather than knocking and waiting.”

Brian, 51, SMA: “I once had a nasty experience when my college girlfriend tried a new shade of permanent lipstick, ‘guaranteed to stay put all night’. Whilst dressing me, the morning care staff thought I had developed a nasty rash and called in the medical staff. Everyone stood around me deciding what was to be done about this nasty deep red rash on my penis. The college nurse produced some cortisone cream and when applied, she realised the mark was merely lipstick. This would have been embarrassing with one person in the room let alone three!”

Tom, 27, Unspecified Neuromuscular: “Nope!”

Steve, 28, Duchenne MD: “I know ’69’ is off limits for me because I tried it once. I can’t move around by myself when lay on a bed. So I was flat on my back and she sat on my face and almost suffocated me! All I could do was flap my hands around like a dolphin. She thought I was loving it and so just carried on.”


Click here for the GIRLS!

International Women’s Day

8 March 2019 ~ IWD

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history. These women advocate equality, inclusion and disability awareness.

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.


What #IWD means to me

Light is often shone on independant 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 every-woman.

The women we are not aware of. The women behind the scenes who just get on with life. The single mum’s. Those living with debilitating conditions who 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, tanacity, 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 recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING.

What does International Women’s Day mean to you?

Top 5 Actors

A while back, I was invited by a strange young chappy named Mitch (twodoughnuts) to write a guest blog. 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 list 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 like ‘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?? 

Leave a comment & let us know!