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

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!

Valentine’s Special: Part 1

Disability & Dating ~ Q&A

Four women 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?

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.

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

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.”

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

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.

4. What frustrates you most about dating?

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.”

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?

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.”

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

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.”

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

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.”

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

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.”

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

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.”

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

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.”

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

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.”

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

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!”


Coming Soon: Disability & Dating ~ The Boys!

3 Great Ideas For A Stay At Home Date

The dating world is a bit of a minefield, but it can be especially difficult if you have a disability. Unfortunately, there is still a lack of awareness and much stigma around some lesser known disabilities.

Able-bodied people may be unsure about acknowledging their date’s disability, for fear of causing offence. This lack of understanding, awareness and confidence often leads able-bods to avoid dating disabled people.

Regardless of ability or circumstance, there are great dating coaches out there who can offer guidance and support.

You might feel more comfortable, confident and secure in your own home, and therefore prefer to date in this familiar setting rather than in public. Let’s not forget, going out to eat at a restaurant is expensive when you factor in drinks as well. You might not be able to afford such a social luxury, thus adding even more stress to the situation. For this reason, conducting your dates from date home is sometimes better.

Of course, it’s not sensible or advisable to first meet somebody at your home (even if you’ve spoken on the phone). But once you feel safe, reassured and familiar with each other, a date night at home could a viable and appealing option.


Here are some great ideas for a stay-at-home date:

Image Source

Themed Movie Nights

A movie night is the classic at-home date idea, but why not take it to the next level and give it a bit of a theme? Pick a movie series or genre you both love and hold an all-night movie marathon. Order a takeaway (to make life a little easier) or maybe cook your signature dish to impress your date.

Watching a French film, why not cook some French food to go with it? Make it more of an occasion!

Cooking together is another fun idea – it’s romantic and will encourage bonding, interaction and tactility.

Turn Your House Into A Wine Bar

Going to a fancy wine bar may seem great, but it’s going to cost a fair amount of money. However, if buying booze from the supermarket, you could create a mini wine bar of your own. Get a few different bottles, they don’t have to be expensive, and maybe splash out on a classic bottle of moet chandon to make the night extra special.

Games Night

This is a particularly good idea if you’re nervous about a date and want to make it a bit more casual. Invite other couples along and have a games night. This way, you’ll still be able to spend time with your date in a fun setting, minus the added pressure of being alone. Being part of a larger group will aid social interaction and enable the conversation to flow more freely and without any potential awkwardness.

So, as you can see, stay-at-home dates can be just as fun, engaging and romantic as going out, (and they’re a lot cheaper too, which is always a bonus!).

Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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Interview | ‘The Undateables’ Steve Carruthers

“It is a life-changing experience.        Embrace it!”


The Undateables is a Channel 4 TV show featuring people with a variety of disabilities, all of whom are looking for love.

Steve Carruthers, who has Crouzon syndrome (a genetic condition affecting the shape of the face and head), was a participant on series two, back in 2013. Though romance did not blossom with his date, the experience gave him much needed confidence.

Following his appearance, Steve – now 36, from Manchester – soon met the love of his life Vicky, through social media. Vicky had in fact seen Steve on the show and decided to contact him.

The Undateables screened Steve’s romantic proposal and the couple later married in 2015.

1. Steve, why did you apply to The Undateables and, what reservations did you have?

I initially applied for a different show called ‘Beauty and the Beast: The Ugly Face of Prejudice’. As a result, I was approached to appear on series one of ‘The Undateables’, but I declined as it had never been on TV and I didn’t get the gist of the show. After series one ended, I was approached again but this time it was by my good friend Adam Pearson, who worked with the team to find participants for the show. He convinced me to give it a chance as he said it would help me with my confidence and outlook as I had a negative outlook on life after the loss of two of my siblings. I was a bit reserved and concerned that after being on the show, more people would make fun of my appearance. But, in doing the show, my outlook changed to a positive one and allowed me to help other people in a similar position.

2. How were you treated throughout the production process?

The whole team was incredibly nice, supportive and understanding. Everything was treated with care and compassion.

3. What response have you received following your appearances?

Like all things with TV, there are negative people who see disability as something to mock and joke about. But the positives outweighed the negatives in a huge way. People are so kind and understanding. I found that it [the show] helped educate people about disability. It also helps with how we perceive ourselves and how society perceives us to.

4. The show has been accused of being insensitive and exploitative. The title in particular is widely criticised. What do you think?

The show itself really is everything you see (believe it or not). It is exactly how dates are in real life – you have moments of silence, awkwardness and moments of hope. The show’s titles show cupid shooting the [prefix] ‘Un’ off, leaving the word ‘dateables’. The point of this is to prove we are all dateable, and that we [disabled people] have the same experiences on dates as everyone else does.

5. What would you say to anyone who is considering applying to the show?

My advice to anyone applying for or appearing on the show is to go into it with an open mind. There will be those who will say [derogatory] things, but overall the positives more than outweigh the negatives. It is a life-changing experience. Embrace it! The positive message you’re putting out there helps others as well as yourself. The show has had a huge impact and gives so many people, like me, much needed confidence. Those who watch the show have gained so much more understanding of different disabilities too.


I’d like to thank Steve for taking the time to speak with me.

You can watch his original appearance on the show here.

Images courtesy of The Undateables and The Sun


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Interview | Amin Lakhani: The Dating Coach on Wheels

Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?

Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the ‘Dating Coach On Wheels’. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.

Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.

He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.

Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.

He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.


1. You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?

I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.

But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.

I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.

I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.

2. Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?

I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.

I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.

Amin Lakhani before his makeover

2. You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?

Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.

I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.

I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!

4. You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?

I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.

Amin Lakhani now!

5. Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?

Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.

With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.

I have two main points:

Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.

Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.

6. You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?

Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.

I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.

7. It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?

Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.

There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.

8. Can you please explain your working methods?

As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.

For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.

9. What is the one question you are asked most frequently, and what advice do you give in response?

Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.

Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.

10. What are your top dating tips for those who are particularly nervous or lacking in confidence?

It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.

I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.

In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.

Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.

Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.

11. Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?

Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.

12. Where do you see your career taking you and what more do you hope to achieve?

I’m kind of happy where I am right now. I really just want to help more people.

I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.

I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.


I’d like to thank Amin for taking the time to talk with me.

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*This article can also be found on the Disability Horizons website.

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My view on dating for MDUK Trailblazers

My latest blog piece for Muscular Dystrophy UK Trailblazers:

“I’ve learnt that life is not defined by your relationship status and you don’t need a partner to be happy. It doesn’t hurt to keep an eye out though, does it!”

On Dating Diaries Day 2, we hear from Carrie Aimes who talks about why it’s okay to be single.

Read more of her great blog here.

This blog forms part of Trailblazers Dating Diaries, which looks to lift the lid on dating and relationships when having a disability.

I’m not at present in a relationship and that’s fine, that’s okay. I’ve never actively searched for a partner – dating sites in particular just aren’t for me. In fact, dating isn’t for me if I’m honest. Pretty socially awkward at the best of times, the whole dating thing feels far too daunting a prospect. It just seems so forced and unnatural. Of course it serves its purpose and is a means to an end. But knowing myself as I do I think I would just fail miserably!

A fairly solitary character, I like my own space, I like being able to do as I please, when I please. And I most definitely couldn’t bear to share my bed, it’s my haven!

As is the case for many with muscular dystrophy, much of my time is lost to frequent and prolonged bouts of respiratory illness and fatigue, which doesn’t exactly lend itself to dating or a cohabitative relationship.

I live with my parents in their home which is not exactly the dream for a 28 year-old woman. So privacy and finding time for myself is enough of an issue without adding another person to the mix.

Yes it’s the norm for those my age to be settled in relationships or even married, as most of my friends are. Perhaps my choice to remain single for the time being (and it is a choice) is selfish. But why not be selfish. This is my life and right now I’m content with things as they are. Relationships are hard work, they require you to compromise and invest your time and energy. At present, I’m just not willing to share myself with anyone.

This isn’t to say I’m not open to the possibility of meeting someone spontaneously, as I have found tends to be the best way. But if it doesn’t, I’m totally cool with that. I’ve learnt that life is not defined by your relationship status and you don’t need a partner to be happy. It doesn’t hurt to keep an eye out though, does it!

[Un]dateables

In February 2017, I wrote a piece for Muscular Dystrophy UK about the Channel4 TV dating show, The Undateables

Here is my unedited version…

Last week Channel4 aired the final episode of its reality series The Undateables, a dating show for disabled people. For those who are unfamiliar, individuals with any disability are invited to appear on the show, now in its sixth season. With the help of dating agencies and personal introduction services, they take part in blind dates, speed dating and match-making in the hope of finding love.

Now, I’ve seen almost every episode since it premiered in 2012, and I have to say I am a fan and supporter. I appreciate and understand the controversy surrounding the show, particularly within the disabled community, although I personally disagree with much of the negative criticism. For this reason, as someone with a physical disability myself, I though it time to put forward my point of view.

Firstly, I’d like to point out that all participants have applied of their own free will. Following their appearances, all have reported a positive experience, even those who did not find love as a direct result of the show. Tammy from series 5 says, “I put myself forward for The Undateables. At no point during filming did I feel like I was being used for entertainment. It’s an entertaining show [but] we all just want to find someone who loves us for us.”

The program has been invaluable and life changing for many, leading to long term relationships, marriage and babies. Furthermore, despite the claims of some, disabled individuals have not been coupled exclusively with other disabled people. For example, Brent with tourettes married his able-bodied date Challis, and Steve with Crouzon syndrome married able-bodied Vicky whom he met on Twitter after the show gave him much needed confidence – he remains friends with his able-bodied date from the show. Then there’s Carolyne from the first series whose childhood sweetheart left her when she became paralysed following a spinal cord lesion. She later met Dean who is able-bodied. The couple had their first child together in 2014. These are just a few of the many success stories resulting from the show.

Some critics have called into question the editing, which it can be argued is an issue with any reality show. However, taking into consideration the accounts offered by the participants themselves, it would seem to me that great care has been taken to ensure fair and accurate representation. Again, personally I have no issue with the tone or editing and have never found it to be exploitative, patronising, sensationalist or insincere. Quite the opposite in fact, I feel The Undateables realistically and positively depicts a range of disabilities, thereby raising awareness and breaking down social barriers and stigma.

James, who has Asperger’s took part in the show last year. He told ITV’s This Morning, “It [the show] provides a lot of education on a wide range of things, not just conditions… The fact that people will tune in knowing they will learn a bit more, maybe take away the stigma, is a very positive thing. It paints a very positive picture of British audiences.”

The format itself is understandably a contentious issue: why is it not the norm for disabled people to participate in mainstream dating shows such as First Dates, also a product of Channel4, and ITV’s Take Me Out? Why must the disabled community be confined to a show exclusively for them? There is no definitive answer, though I would argue that it comes down to choice and demand.

As previously stated, those who partake make the choice to do so. Many have learning disabilities and are supported by family, friends and caregivers, as viewers will know. Therefore, to suggest they are being taken advantage of by producers, which some critics have, I feel implies that these people are not able to form rational decisions and make up their own minds. This is inaccurate and unjustified. Secondly, the show is now in its sixth year (as of Feb 2017), which proves there is continuing demand from both the viewing public and applicants eager to find love, friendship and companionship.

I have found that questions and accusations such as the aforementioned are often posed, more often than not by those with disabilities. This indicates to me that, in fact, it is not predominantly the able-bodied community who have issues with the show. Yes, you may hear the occasional, ‘bless them’, ‘aw, how sweet’ and ‘good for them’ from able-bodied viewers – how very dare they indeed! But to conclude that this is a form of ‘inspiration porn’ is in my opinion, vastly overstretching the mark. I take issue with the term ‘inspiration porn’, particularly in relation to The Undateables. Frankly, even if viewers are in some way inspired by the determination and go-getting attitude of those they see on the show, why is that so awful? Paralympians are equally as inspiring as Olympians. Yet there are some, particularly in the disabled community, who deem this to be ‘inspiration porn’. That is to say, people draw inspiration from disabled athletes solely due to their disability rather than their sporting achievement, as well as to feel better about their own lives. Personally, I think this is nonsense and insulting to both the able-bodied and disabled.

I cannot speak for the entire viewing public, obviously, but I have watched the show with friends and family over the years, and the feedback has always been one of support and genuine happiness for the love-seekers. Not one person I have spoken to has ever indulged in this so called ‘inspiration porn’ to, as critics say, feel better about themselves. This is the one accusation that frustrates me the most. I could go on and on with this point, but I fear I may lose you (assuming I haven’t already).

Okay, the title. Are Channel4 saying that we, the disabled are undateable? Put simply, no. Producers have themselves stated that the title is to challenge this common misconception within society. Furthermore, as viewers will know, during the opening sequence of each episode, the prefix clearly falls from the word ‘dateables’, thus indicating the contrary.

The show itself is proof that no one is undateable – an eye opener to many viewers who might have previously thought otherwise or have just never considered the fact that like them, we too want love. For one reason or another, there remains a section of society that has never encountered anyone with a disability. Through no fault of their own, they consequently may be ignorant to the needs, desires and feelings of disabled people. I think The Undateables is a great way to introduce this concept to such individuals. As James with Asperger’s says, the show is successfully removing stigma and raising awareness.

I have an older brother with complex learning disabilities, and so I’m able to draw from his perspective in addition to my own. He has expressed a keen interest to appear on The Undateablesand my family and I would be more than happy for him to do so. Neither of us feel alienated, uncomfortable, ridiculed or patronised by the show. Again, I do appreciate the criticism but for those who bother to watch it with an open mind, I believe you will find it to be well-meaning, sincere and sympathetic. Those involved have benefitted, it has given others in similar circumstances the confidence to look for love, and it has made society realise that we all have basic human needs and desires, and the right to pursue them.

It’s easy for viewers to criticise on social media, having watched only one or none of the episodes. But I implore you, ask the participants. Their response says it all, for me anyway. It seems to me the majority of negative critics haven’t actually seen the show and are therefore judging it superficially. It is certainly not a freak show and is not treated as such.

The dating agencies, often run by the parents or relatives of those with disabilities, aim to match clients based on common interests. Disabled people are not merely bundled with others with similar disabilities. To assume so says more about those who think this than anyone involved with The Undateables.

So finally, I urge the harsher critics out there to actually WATCH (preferably more than once!) before judging so narrow-mindedly.

Who knows if Channel4 will commission another series of the popular show. Based on viewing figures, I’m guessing it’s more than likely they will. If so, I’ll certainly be tuning in.