My Disabled Body | Muscular Dystrophy

Anyone who knows me will tell you I’m incredibly self-conscious of my disabled body.

I’m much more of a behind-the-scenes presence, and I hate being photographed!

My insecurities have deepened over the years, as my condition (Ullrich congenital muscular dystrophy) has progressed.

My spine is curved significantly in a ‘S’ shape, shortening my torso and causing asymmetry. I am underweight with muscle degeneration, and contractures in all of my joints.

Oh, and I am a ghostly shade of pale!

Being so very slight of stature and a non-ambulatory powered wheelchair-user, clothes are ill-fitting, often uncomfortable and don’t drape well.

Most of the time I feel like a bag of crap!

As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.

Me, wearing school uniform, aged 4
Me (right) with a primary school friend (left)
Aged 8, sat in my manual wheelchair at school
Me (second from left), aged 9, with primary school friends
Me, aged 9, with primary school friends
On holiday, in my manual wheelchair. Aged approx 12

But, of course, kids (and adults) can be blunt, and, sometimes cruel with their words and observations. As time went on, I was subjected more and more to stares, pointing, judgement and exclusion.

I became a full-time wheelchair-user at the age of 10.

Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’.

Looking back, I guess it affected me more than I realised.

My teens were hard. I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.

Me, aged approx 15
Me, aged approx 17, trying to avoid the camera

Then came the dating years…

Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.

Somewhere along the way, I lost myself and my sense of identity.

Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!

I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.

But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.

If others don’t like it, that’s absolutely fine, but they can kindly fuck off!

In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…

…Excuse the Listerine in the background, haha!

The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.

Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?

Dating with a Disability | Q&A

In part one, I shared my personal experiences with dating as a non-ambulatory wheelchair-user, as well as some motivational advice.

Part two is a little more light-hearted, giving an insight into some amusing dating disasters!

In this third and final offering, I answer ALL of your burning questions…

Instagram Q&A

(Above): Thanks to my mate, Ross Lannon for this delightful contribution!

Twitter/Facebook Questions

Q: What tips do you have for disabled people who don’t understand why someone would want to date them?

A: I think it’s natural to lack confidence and feel insecure, regardless of (dis)ability. I’m sure we have all felt this way to some extent. This comes down to how we perceive ourselves and self-worth. I do think we need to find happiness and contentment within ourselves before entering into a potential relationship. Believe me, I know how difficult this is! Also, there comes a point where you just have to take a leap of faith and trust that what this person says is sincere. If they tell you they like you and enjoy your company, trust them! Don’t question it – you will drive yourself mad and eventually irritate them too. Yes, it might go nowhere, but at least you will have allowed yourself that opportunity. Dating is all about confidence, self belief, taking risks and having fun. I hope this helps!

Q: What is the biggest challenge you have faced?

A: Again, for me, it’s all about realising my worth. I am very self-critical and have, at times, convinced myself that no one could ever want me. I thought I was too much to take on; an unnecessary burden. Why would anyone date me when they could go out with an able-bodied girl? But I have been proven wrong. Initially, I was very sceptical and found it hard to believe guys when they told me they liked me. But I soon realised I was doing myself no favours; this was self-destructive behaviour.

Q: What are your biggest insecurities?

A: My body and physical limitations. I am non-ambulant, incredibly petite and have a significant scoliosis (curvature of the spine). I don’t look “normal” and I don’t have a curvy, womanly physique. I would try desperately to disguise this with baggy clothes, and felt embarrassed by my child-sized stature. However, I now make a point of celebrating my tiny, “pixie” frame. After all, being small has it’s advantages! I’m easy to carry and throw around! I am what I am. There’s nothing I can do to change my body. If people don’t like it, that’s absolutely fine – it’s their problem, not mine!

Q: How and when do you reveal your disability and limitations when dating?

A: This can be difficult! For me, it isn’t as simple as, “I can’t walk”. My disability comes with many challenges and health implications. It’s hard trying to explain this to someone who has no knowledge or familiarity with my condition, without overwhelming them with information. I think it’s important that you are willing to answer questions, however silly they might seem. Personally, I don’t take offence when guys ask if I can feel and if I’m able to have sex. It’s natural curiosity! It doesn’t mean that’s all they’re interested in.

Dating Disasters

Following my last post, I was encouraged to write more on the subject of dating with a disability. Not that I’m much of a dater. I don’t do the apps (other than a brief stint on Hinge) or actively chat up blokes. If it happens, it happens.

A mate told me to share some dating disaster stories. I’m not sure there have been any disasters, as such. Rather, a few funny anecdotes.

One took place on a freezing cold day in January – not ideal. He wrapped his coat around me, which was quite sweet. He wouldn’t let me keep it (less sweet, methinks) but I did steal his hat!

Another date (if you can call it that) was with a 34 year-old guy from dating app, Hinge. Though stereotypically attractive – clean cut with washboard abs – he really wasn’t my type at all.

Still, I was encouraged to go for it, mainly because he’s older and, in theory, more mature. So, on a whim, after months of chatting on/off, I agreed to meetup.

This lead to possibly the most awkward and stale encounter I’ve ever experienced. I’m not sure if he was going for the brooding, ‘treat them mean, keep them keen’ thing, but it translated as pure arrogance. Plus, he had zero sense of humour and was somewhat full of shit.

He claimed to have dated Ellie Goulding and that one of her songs was written about him. Google disagrees!

The only thing he seemed interested in was his car (which, I may have inadvertently insulted. I amused myself, anyway), and getting a hotel room there and then.

Now, each to their own, but I’ve never been into meaningless one night stands. Plus, let’s be real for a second, I’m a girl. A “vulnerable” girl. So if a guy can’t appreciate why I don’t want to hook-up within 10 minutes of meeting, well, sod off mate!

So, in the end I told him I was off home for my tea (yes, I really said that).

I took the long route and nagged a mate on the phone on my way. As I rolled along the riverside in my chair, a little kid waved enthusiastically at me. That made me smile and was most definitely the highlight of my evening. Kids are so much easier than men!

Prior to this, I met up with a lad I went to school with. He’s a bit quirky with long, dark, wavy hair and piercing blue eyes – ding, ding!!

Somehow, we got chatting after some 15 years, and I went to his place. There was no plan or agenda on my part. Yes, I fancied him – a little – but I’m terrible at the whole flirty thing.

Now, I’m completely non-ambulant and haven’t been up a flight of stairs in many years. So, despite worrying that I’d be dropped on the floor in a heap, I trusted him to carry me up to his room where he plonked me on his bed.

After a fair amount of kissing and rolling around, the boy got a bit excited and, well, released his manly juices over my lovely top! Mmm, crusty!

You may be surprised to learn this beautiful union developed no further.

Dating with a Disability

Honestly, I hate dating. It’s generally pretty nerve-wracking. But, add a disability into the mix and the whole thing becomes even more challenging.

Disability aside, I am an acquired taste. I have a very dry, dark, and somewhat sarcastic sense of humour. I’m not a natural people person, and I can’t do small-talk to save my life. Yes, I’m a bit of a weirdo.

And then there’s the chair

Many seem to assume disabled people only date those with a similar disability. I never understood that.

Personally, I’ve only ever dated able-bodied guys. This isn’t necessarily a conscious decision, though in all honesty, it does make life easier!

Dating with a physical disability like mine can be awkward, embarrassing and frustrating. There are certain things I cannot do that I REALLY wish I could. So, you need to be willing to answer questions, explain your limitations and ask for help.

I don’t think I’ve dated anyone who hasn’t asked the following:

– Can you move?
– Can you feel?
– Do you hurt?

If and when you’re hit with the 20 questions, my advice would be to try and keep it light-hearted and good-humoured. Remember that many people have no knowledge or familiarity with your disability. They are simply curious and showing an interest in YOU.

You may be reluctant to date because of your disability. Maybe you lack confidence or think that no one would want you. Trust me, that’s bullshit!

Yes, you might make an arse of yourself and roll home feeling like a bag of shit. I know I have. But hey, if a date goes badly, you never have to see them again!

Bad experiences will knock your confidence. But you’ve just got to dust yourself off and try again.

One guy once told me that I’m no one’s type (referring to my disability). What a lovely chappy! Well, he kissed like some kinda mutant slug! So, no great loss there. Cheerio, bye-bye…

Dating Apps

This seems to be the go-to method these days. It works for many, but I’m not a dating app type at all. I can tell you now, you’ll never see my face on Tinder or PoF. And if you do, it ain’t me!

The only app I ever used – reluctantly – is Hinge (dubbed “Cringe”), recommended by a good friend.

Much to my surprise, it made quite an impact on me and effectively changed my whole perspective on love…

For a long while, I was referred to, by some, as “the ice queen”. I had my guard up and always kept people at arms length, due to low self-esteem and a fear of judgement and rejection.

I was totally cynical about love and never showed any interest in marriage – I wasn’t the little girl who fantasised about a big white wedding.

Despite a few dates, I wasn’t taking Hinge seriously and never thought I’d meet anyone or fall in love. That just wasn’t me. Then, most unexpectedly, I did.

Quite early on, my mum said she could see me falling for this guy. She told me if it didn’t work out, it would break my heart.

“Nah, we’re just keeping it casual and having fun. Nothing and no one will break my heart”.

Or so I thought. But damn it, mama was right. I really did fall for him. I fell hard and fast (not on the floor, although that has happened)! And my heart really did break when it ended.

But that’s life. Shit happens. You live and learn.

The point is, you have to be willing to take risks, open up, allow yourself to trust, and yes, to get hurt.

It sounds cliché, but it’s essential you realise your worth. Never allow anyone or anything to make you feel you are not good enough or undeserving of love and affection!

And, if anyone does make you doubt your worth, well, fuck ’em! (Not literally).

Guest Post | 7 Tips to Live a Confident Life Through Your Disability

Author: Jamie Costello

It’s fair to say that one of the biggest challenges of being born with a disability is that it can be difficult to be who you are without thinking of the physical condition that you’ve been born with. It’s not hard to understand why a disability can knock the confidence from you. Many individuals can find it difficult to adjust to life that requires a major change to their day to day routines and tasks. This can make it more difficult for an individual with a disability to feel confident in themselves. However, some useful insights may be useful in picking up your confidence and helping you for the future.

1. Don’t live up to the expectations others have of you

When people look at those with a disability or injury, they tend to have pretty low expectations of you because of how you look or the disadvantage that you may have. But their judgements are wrong about you. You may have a lot to juggle on your plate such as school or work and you’ll need to learn new skills that can help you to adapt with your disability. But in learning these it will definitely help you for the future. Essentially, don’t let your disability bring you down and don’t be afraid to try new things.

2. Don’t compare yourself to something else

Everybody has aspirations and you shouldn’t let any condition you have prevent you from reaching them. There’s nothing wrong with being ambitious but also be realistic about your future goals. You know what you’re capable of and you’re sure able to do it. Don’t let others influence this.

3. Doctors don’t necessarily know everything

Medical professionals do a fantastic job and their skills are to be admired in what they do, but there can be occasions where they don’t necessarily have all the answers that you’re looking for. You know yourself pretty well and there will be others around you who know you pretty well too. Don’t let the advice of doctors get you down and in some cases, consider doing what you think is right as it can normally be the right decision.

4. Be open to bringing in new people

Due to your circumstances, it’s likely that you’ll come across and be introduced to new people in wonderful ways. It may form some of your greatest friendships but at the same time, you may come across some people who will find it difficult to accept you. Don’t let this get you down and force yourself to get them to like you. Stick with the people who feel comfortable with you and you feel comfortable with.

5. Others may be afraid to be honest with you

People around you may have a feeling of sensitivity around you and the fear that they may hurt your feelings. A lot of positive comments is great to hear and can be great for your self-esteem, but at the same time it might not be a great help. You’d also want people around you who speak honestly with you and they’re more likely being that way to benefit you. The majority of the time, they’ll be the one that you want to go back to for further advice and perspective.

6. Don’t be too critical of yourself

Consider the situation that you’re in and how there are very few people who are in the same boat. The fact you’re continuing to enjoy life even though you have a disability already shows good character. Be confident in the fact that you’re knowledgeable on elements of life that others have no clue about. The qualities that you have as a person are the majority of what’s needed to get by in life.

7. Continue to exercise and keep hydrated

Do whatever it takes to remain active. Consider taking up sports that are adaptive to those with disabilities, and save yourself from being a couch potato. It can help to mentally improve your wellbeing.

Self-esteem and confidence is a large issue in today’s society, particularly when it comes to the impact it can have to your mental health too. When we think of other topics surrounding these issues, a big one being individuals resorting to cosmetic surgery to improve their appearance, a lot of these options are extremely unnecessary because regardless of the condition that you have or how you look, embracing who you are is always the best way to move forward and gain the confidence you deserve.