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.
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.
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.
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).
Since we’re all still stuck at home, twiddling our thumbs, I thought I’d suggest some reading material for you.
The six books I have chosen focus on the themes of disability, mentalhealth, positivethinking, overcomingadversity, trauma, and recovery.
(Left – Right) ‘Defiant’ by Janine Shepherd, ‘Wheels of Motion’ by Justin Brown and Lucy Hudson, and ‘True Grit and Grace’ by Amberly Lago
A few years ago, I had the privilege of interviewing this former Olympic hopeful who beat the odds and transformed her life after suffering a horrific accident.
Janine Shepherd radiates energy, enthusiasm and an endearing wit. Her memoir is a must-read!
Some of you may know that Lucy is a good friend of mine. Like me, she is a non-ambulatory wheelchair-user with a form of muscular dystrophy.
‘Wheels of Motion’ is a poetry anthology unlike any other. If you live with a disability yourself, I highly recommend you check this out! (Available on Amazon).
Amberly Lago is another remarkable, kind and generous woman I was able to interview following the release of her memoir, ‘True Grit and Grace: Turning Tragedy into Triumph’.
Fitness fanatic, Amberly’s life was turned upside down following a debilitating motorcycle accident in 2010, leaving her with significant nerve damage and lifelong chronic pain.
She now devotes her life to helping others.
(Top Left – Right) ‘Things Get Better’, and ‘Beautiful’. (Bottom) ‘Start Your Day with Katie’. All by author, Katie Piper.
Acid attack victim, Katie Piper, is now a well-known media personality, activist, documentary maker, charity founder and mother.
She has achieved so much since her brutal assault in 2008, which left her partially blind and with full thickness burns. Katie has endured over 200 operations and invasive treatment to ensure her recovery. She really is a true inspiration!
I read Katie’s first book, ‘Beautiful’, around eight years ago. It’s a real eye opener! Yes, it is shocking and distressing, but also incredibly motivational. I highly recommend this book to anyone and everyone.
Muscular Dystrophy is an umbrella term for a group of muscle diseases.
There are nine forms (see image above), which then divide into many more sub-types.
The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.
Some are born with the condition, while others do not display symptoms until adulthood.
2. What causes it?
A faulty or mutated gene. It is therefore, a genetically inherited condition.
If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.
I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.
I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.
3. What form do you have and how does it differ from other types of muscular dystrophy?
I have a rare form of congenital (from birth) MD, called Ullrich.
But in summary, it is slowly progressive, causes joint contractures, and does not affect the heart or intelligence.
4. Can people with MD have babies?
The simple answer is YES! MD doesn’t affect fertility in any way.
My good friend Fi Anderson has a rare form of MD, and is a mother to two daughters, neither of whom have MD. Check out Fi’s blog here!
5. Can a baby be tested for it in the womb or only after birth?
Prenatal diagnosis is possible for some forms of muscular dystrophy, but not all. Non-invasive testing can be carried out from 7 weeks into a pregnancy.
If one or both parents are carriers of a particular muscle-wasting condition, there is a risk the child will be affected.
It is advisable to contact a geneticist for further information and guidance.
6. What do you wish people unfamiliar with MD knew about it?
I wish there was much more awareness of the condition, and the fact that there are many varying forms.
Sadly, many people haven’t even heard of it.
Furthermore, those who have tend to associate it with Duchenne (the most common form).
Almost every medical professional I’ve encountered throughout my life has assumed I have Duchenne, which goes to show the lack of familiarity and education.
There is a lot of information, research and charitable funding for Duchenne MD, which is fantastic. But, there is very little for other forms, which is, I have to admit, rather frustrating.
This means that people living with lesser-known forms, that are just as debilitating as Duchenne, do not receive the same support.
I became completely non-ambulant at age 10, and I now use a powered wheelchair.
I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.
UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.
For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).
I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.
Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/
I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).
8. Pros and Cons of living with UCMD?
The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.
You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.
The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.
I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.
Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!
My Motability WAV
9. Has it changed/got worse over time?
Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.
The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!
After all, if you’re a smoker you are limiting your life expectancy!
As a child, I could walk short distances wearing custom-made leg splints.
Joint contractures and the severity of my scoliosis has increased.
My lung function is significantly worse as an adult.
10. What are some of the common misconceptions?
There are many! Here are just a few assumptions…
I have family members with the same condition (I don’t).
I can’t have children.
I can’t have sex or a loving relationship (some even assume I wouldn’t want to).
Many assume I can walk, even when I try to explain I am completely non-ambulant.
People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.
For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.
I’ve read many trivial complaints on social media about the Coronaviruslockdown.
From park, pub and salon closures, postponed gigs and concerts, to cancelled botox, filler and wax appointments. Some are even moaning because they can’t race around and show off in their flashy cars. What a shame!
I appreciate we all have our own interests, outlets, coping mechanisms and methods of self-care. We all want to look and feel our best, and we all need somewhere to escape to.
But please, let’s try and keep things in perspective.
The current situation isn’t permanent. Of course, it’s tedious, stressful and frustrating, and will impact some considerably more than others. But it will pass and “normal” life will resume.
People on the frontline are literally risking their lives to help others – complete strangers. They are physically and mentally exhausted, yet keep going.
Carers continue to support the most vulnerable in society, despite the risk.
Key workers carry on working to ensure society functions and people are provided for.
On the upside, lockdown provides an opportunity for families to unite, spend quality time together and talk more.
But for others – men, women and children – being stuck in close proximity, unable to escape, can be a living hell.
The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since lockdown began!
We all have problems and we are all entitled to feel and express what we need to in order to get through these trying times. Your experiences and frustrations are valid.
But please, keep in mind the medics, carers, key workers, the elderly, disabled, those living with domestic abusers and those separated from their loved ones.
Try to appreciate what you do have – for example, your health, home, and hope for the future.
When you’re feeling low, maybe write a list of all the positive things in your life and focus on that rather than the things you are currently missing out on.
Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.
I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.
So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.
Final Thoughts
Show your thanks and appreciation for the NHS and those working in health and social care.
Illustration of NHS healthcare workers being saluted by Superman.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Print-out for those wanting to help anyone self-isolating due to Covid-19.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
This stylish food preparation board, made from sustainable Rubberwood, is a multi-purpose, top quality kitchen aid.
I was so impressed with this piece! It is really attractive and doesn’t look at all like a standard disability aid.
Easi-Grip Food Preparation Board
It is designed for those with weak hand function, including impaired grip, poor hand control and tremors.
Slicing a sweet potato using the multi-purpose Easi-Grip food prep board
Using only one hand, the Easi-Grip board allows you to grate and slice food effortlessly. The spiked area ensures food is kept in place for peeling and cutting.
Easi-Grip Food Preparation Board
Several essential items all-in-one: Stainless steelfine/coarse graters, slicers, collecting bowl, spiked area, and long-lasting wooden board.
I have muscular dystrophy ~ contractures, poor grip, and very little strength. Despite this, I found the Easi-Grip food prep board really easy to work with, and a huge asset. I no longer need to ask for any help, which is a big deal for me!
My mum, who has osteoarthritis, loves this equally as much as me! Suffering with joint pain and stiffness, she found it significantly easier to use than regular kitchen tools.
This popular trio of knives has undergone a recent design revamp – the ergonomic handles are now thicker, making them easier and more comfortable to use.
The bright lime green areas indicate the “soft-feel” non-slip areas, as well as making them a bit more modern and aesthetically appealing compared to standard kitchen knives!
Demonstration of the Easi-Grip knife being used to cut a vegetable on the Easi-Grip food prep board
I would highly recommend all of these products to anyone, regardless of (dis)ability. They are top quality items and I am so thankful to Manage At Home and PETA [UK] LTD for sending them to me. I love to cook, and these kitchen aids have made life a little easier for me.
*Disclaimer*
This post is in collaboration with Manage At Home and PETA [UK] LTD. The products were gifted to me in exchange for an honest review. Opinions expressed are entirely my own.
