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!

Carers Rights Day

Life with PAs

I have Ullrich congenital muscular dystrophy, and consequently require support from carers.

For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.

I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!

I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.

Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).


Carer’s Allowance

If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.

You don’t need to be related to, or live with, the person you care for.

My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.

This may seem like a decent sum of money, but consider ~

£64.60 = 35+ hours care work. That equates to £1.80 per hour

This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.


My Open Letter to Carers/PAs

On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.

Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.

As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)

Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.

So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!

#CarersRightsDay2018

Interview | Shane Burcaw

Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.

Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.

Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.


1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?

I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.

2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?

My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!

It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.

3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?

Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.

4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?

Both of my memoirs (Laughing at My Nightmare, 2014; Strangers Assume My Girlfriend Is My Nurse, 2019) are about funny experiences I’ve had, from my early school years into adulthood. Strangers is more about society’s flawed perceptions of disability. My children’s book (Not So Different, 2017) answers the most common questions that kids ask about my disability and my wheelchair.

5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?

Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”

I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!

6. Has your attitude to disability, your own in particular, changed over time?

Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.

7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.

Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.


I would like to thank Shane for taking the time answer my questions.

I hope you enjoyed reading this interview.


Twitter: @LAMNightmare

Website: Laughing At My Nightmare

YouTube: Squirmy and Grubs

Instagram: @shaneburcaw

Turning 30…

Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.

I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.

For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!

Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).

Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!


Muscular Dystrophy ~ A Life-limiting Condition

Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).

In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.

Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).

Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.

Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!

And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 ~ thank’ya muchly!


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Interview | Accessing University as a Disabled Student

My good friend Lucy recently graduated from Canterbury Christ Church University with a First class honours degree. Like me, 24 year-old Lucy who lives with her family in Kent, has a progressive form of muscular dystrophy.

Now that she’s free from study, I thought I’d grab her for a chat and ask a few questions about her university experience from the perspective of being a physically disabled student.

Perhaps the insight, information and advice offered here might be helpful to anyone out there with a disability who is applying to university or considering higher education.

Lucy with her carers and peers at university.

1. Hi Lucy, can you please describe your disability and how it affects you.

Hey! So, I have Congenital Muscular Dystrophy – Merosin Deficient, meaning I lack the merosin needed to knit the layers of my muscles together. Because of this, I get progressively weaker over time due to my muscles being unable to properly repair themselves.

This weakness means I can’t really do anything for myself without support from other people. It also makes daily habits difficult as I lack the strength to hold things and do things. A few examples might be that I find it difficult to feed myself as I find certain cutlery too heavy to lift, I can no longer read books unless they’re digital as I cannot hold them or turn pages, and I need regular hoisting for transfers and the bathroom.

Being a muscle defect, my organs and my lungs in particular are affected, meaning I have regular medication and ventilator intervention to aid my breathing. Lying down helps with this, as well as only being able to write/type lying down, which means I lie down most of the time.

2. Did your disability put off going to university?
And what, if any, concerns did you have prior to applying for university?

I knew it would be difficult to apply to university but I wouldn’t say my disability ever “put me off” of applying. I’ve been very lucky with my education in that my parents have always pushed for inclusion and for me to receive education befitting my abilities. I went to a mainstream primary school, a grammar school for my secondary education, and college after that. So applying for university, whilst scary, was the logical next step for me.

That’s not to say I didn’t have any concerns regarding how I would be able to access higher education with my disability. One of my main worries was that Uni is a very different environment from school in that the campus is a lot bigger! Having hoists and a portable bed so I can lie down is all well and good when it’s accessible but, what if I was timetabled for lectures in a different building to my equipment? It wouldn’t be possible to transfer every 5 minutes, so it took a while to negotiate a timetable solely in one place – it was tough but doable.

3. Could you please explain the application process and any challenges you faced?

The application process itself was exactly the same as if I were an ‘able-bodied’ student – I applied through UCAS and SFE (Student Finance England). However, perhaps most importantly for me, I also had to apply for extra DSA (Disabled Students Allowance) as well. It was the next steps that were a bit different…

After applying and being accepted, I began having regular meetings with the disability officer who would be supporting me during my time at Uni. The disability department at my university in particular was split into different fields: physical disabilities, learning disabilities, and mental health.

We discussed suitable timetabling, storage for my hoists and bed, even suitable places for my carers to chill out whilst I was in lectures. It was all sorted over the summer months before term was due to start.

I chose to live at home with my family throughout the duration of my course (2015-18) rather than on campus, so that was one less thing to organise.

4. What support did you receive and was it difficult to get this support in place?

I have my own team of personal carers, provided by an agency, who supported me whilst a student. In my case, this wasn’t something the university or disability officer organised or supported with.

The DSA I used mainly to pay for transport. I paid for a wheelchair-accessible taxi to take me to Uni or the library each day. The finance was also used to supply me with a MacBook and accompanying software such as Dragon Naturally Speaking and Claroread, as well as a printer and allowances for things like ink cartridges and paper.

I personally found the process of co-ordinating with my disability officer really straightforward at the beginning. She really listened to what my needs were and to the best of her abilities made sure everything was in place before I started my course. However, it was once I had enrolled that her involvement became less proactive. I think a major learning experience for me would be that I should have been more proactive myself in maintaining regular contact with her.

There are undoubtedly going to be a number of disabled students on the system at whichever university you attend. Therefore, I would say if you feel you need help or advice, don’t hesitate to ask! Because, when I did ask, she generally followed through. I only wish I’d asked for her help a lot more than I did.

5. How would you rate your university experience from a disability/inclusivity perspective?

Looking back on my experience as a disabled student, I’d rate my experience quite highly to be honest. There were certain things I found more difficult but generally I was included really well. I was able to lie down in lectures and participate fully, timetabling was set so I remained in one classroom for the entire day (something which my peers were VERY appreciative of, and made it known to me regularly). My equipment both on campus and at the library was easily accessible and staff were very helpful in its safe storage. All members of staff – from lecturers to security and housekeeping were continuously supportive and understanding of my needs.

6. In your opinion, what improvements need to be made to make higher education more accessible to disabled people?

As previously mentioned, I’ve been lucky in having the family support and confidence to access university, but I know how difficult it can be to have that confidence. I think one of the main reasons for this is because the process isn’t made clear or obvious. I mean, I had to work out my own process moving forward after my application. Whilst every process for establishing individual needs at Uni is going to be different, I think it’s important that the availability of such a step is highlighted.

I think UCAS and all university websites should, as a minimum, have a clear disability section outlining key contacts of enquiry. It’s far easier to make confident decisions if you’re fully informed and know that there’s going to be the support you need behind you.

I won’t rose tint – accessing higher education as a disabled student can be like having to find your own way in the dark! By no means is it a clear, easy-to-follow process.

7. What advice would you offer other disabled people considering university?

Having now completed university, I guess I’d advise others to try their best not to get anxious about the process. Yes, it’s daunting. Yes, it’s tough. But ultimately it is worth it.

As long as you’re clear and assertive about your needs, there will always be people around to support you. If you need support with campus or timetabling issues, ask the Uni. If you need help in class, ask your lecturers. If you need a pen, ask one of your peers! It all sounds really obvious and stupid but I can’t stress enough how important it is to just ask for help. But most importantly, be confident in yourself and just be yourself!

8. As a physically disabled individual, what do you consider to be the potential challenges around the social aspect of university life?

I think the social aspects of life in any context can be difficult for disabled people but at Uni it can be especially hard for some. I think one of the most important things to remember is that, actually, it’s not just you and it’s definitely not just disabled people that have this issue.

Many students relocate for university, sometimes half way across the country, sometimes half way across the world. So you’re all going to be in the same boat in that respect.
However, I’m not dismissing the fact that disabled people have it tougher than most. I think the most important thing is, once again, confidence. Many people lack the confidence to introduce themselves to disabled people for a multitude of different reasons – they don’t know what to say, they don’t know if you can respond, they don’t know if you want to be spoken to. All of these things can seriously put people off because they don’t want to embarrass themselves, or you for that matter, so it’s up to us to have the confidence that they lack.

Introduce yourself to people at Freshers’ Fayre, be an active member of your class and, if possible, join a society or two. Be the best version of yourself and people will be drawn to you.

*All images courtesy of Lucy Hudson.


I’d like to thank the lovely Lucy for putting up with my interrogation! 

She is in fact a brilliant poet, having co-authored the poetry anthology ‘Wheels of Motion’ which can be purchased here!

You can also follow Lucy on Twitter


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Ambulance Action

Improving Emergency Care for people with neuromuscular conditions

One of many campaigns fronted by Muscular Dystrophy UK is the #AmbulanceAction campaign. MDUK are working alongside health care professionals and people, like me, with neuromuscular conditions to improve emergency care in the West Midlands and Northern Ireland.

Since I am resident in the West Midlands, I was invited to be a part of this long-running campaign.

👆 See above to read my response to the latest developments in Oswestry.

To find out more about the MDUK #AmbulanceAction campaign, click here.

You might also be interested to read my previous blog post – Emergency Care: My Experience.

Going The Extra Mile for MDUK

On the weekend of 12th May, my amazing brother and his two friends took on The National Three Peaks Challenge. This involves climbing the three highest peaks of Scotland, England and Wales, within 24 hours.

The total walking distance is 23 miles (37km) and the total ascent is 3064 metres 6o(10,052ft). The total driving distance is 462 miles.

The three mountains are:


All of this is in aid of Muscular Dystrophy UK.

As you may already know, I have lived my entire life with a rare form of MD – Ullrich congenital muscular dystrophy. Having witnessed his little sister grow up with the effects of this muscle-wasting condition, my brother decided he wanted to do something – something big! – to help make a difference to the lives of others living with MD. That something is the National Three Peaks Challenge.


Report from my brother:

Friday 11th May: We drove ourselves from Worcestershire and stopped overnight at a place called Fort William in Scotland.

Saturday 12th May: The challenge began at 16:40 as we started to climb Ben Nevis, in sunny but very warm weather (a little too warm). We peaked in 2 hours 10 mins, reaching the snowy summit at 18:50. Visibility was perfect and gave us spectacular panoramic views of the other mountains in the area.

Ben Nevis, accomplished!
Ben Nevis! One peak down, two to go…

We then ran down to the car in a total of 3 hours 45 mins, before driving through the night to the hamlet of Wasdale Head in the Lake District, to start our climb up Scafell Pike.

04:19 – Peaked at Scafell Pike

Sunday 13th May: It was pitch black and rainy all the way up to the top (04:19), but the weather cleared on the way down and the Sun started to rise, making it easier to navigate. However, our descent took longer than we hoped due to extremely slippy rocks underfoot, combined with a lack of sleep.

View over Wast Water at first light during descent down Scafell Pike

Finally, we drove on to Pen-y-Pass in Snowdonia to begin our climb up Snowdon. The weather was perfect – sunny with very clear visibility. We took the Miners Track up to the summit (12:30) and then the Pyg Track back down.

The hardest part for me was the first 30 mins of our trek up Ben Nevis. It gets incredibly steep straight away and in the extreme heat I soon got jelly legs. But as we got closer to the summit, it cooled down and I was able to splash my face with cold water from the stream coming down the mountain.

Collectively, we all found the biggest challenge was to keep going despite the lack of sleep. It was hard to maintain enough energy and endurance to stay focused and not trip over!

Challenge completed at: 14:43 in 22 hours 3 mins


I would like to say a personal thank you to the best big brother anyone could ever wish for! We don’t do gushy at all, so he’s probably reading this wondering why I’m being so nice. Rob – you know how I feel. Loves you more x

The bro x

To Adam & Dan – thank you both for being such good friends and for selflessly offering your time and efforts. It means more than you realise.


To anyone reading this, please share the link and if possible, make a donation to support the great work of Muscular Dystrophy UK:

https://www.justgiving.com/fundraising/3peaksformd

The Disabled Blogger Tag

In today’s post, I answer some great questions devised by Elin, over at my blurred world, who created the #DisabledBloggerTag.

There are many blogger tags out there, though this is the only one exclusively for disability bloggers – So, my thanks go out to Elin!

I’d also like to thank my friends, Fi Anderson (Mum, disabled blogger and campaigner), Simply Emma (UK travel and disability blogger) and the lovely Claire from a journey in my wheels, for including me in the Disabled Blogger Tag.

Without further ado, let’s get going…


1. When and why did you start your blog?

‘Life on the Slow Lane’ was founded in October 2016, so I’m still relatively new to the blogging scene. I had contemplated it for many months prior, but put it off as I simply thought no one would be interested in anything I have to say. I also didn’t want to rush into it without some sort of plan and objective. But, after much encouragement from friends who told me to just “get on with it”, I finally set up my website and immersed myself in writing. I do however, regret the name of this blog! On reflection, I really wish I had given it more thought.

2. Did you intend to talk about your disability online from the beginning?

Yes, this really was my primary focus. They say, to write well you should write what you know – and having lived with my condition (Ullrich congenital muscular dystrophy) from birth, I would say this is my expert subject!

3. Have you ever been sceptical about talking about your disability online?

Yes, in all honesty I am still often sceptical. I’m actually an incredibly private person. I prefer to remain anonymous and I don’t generally talk about myself or my condition to anyone. Even my closest friends are oblivious to many aspects of how my physical disability affects me.
Having said that, I am aware of how important it is to share knowledge and experiences. By offering wisdom, advice and information via my online platform, other people living with or affected by a disability could benefit.
Furthermore, my form of muscular dystrophy is particularly rare and unheard of. I therefore feel it is my obligation to raise awareness of Ullrich CMD.

4. What kind of response have you/do you receive in terms of your disability related blog posts?

Firstly, I am surprised to receive any feedback at all! As I said previously, I always assume that no one would be interested in anything I have to say. So to read positive comments from complete strangers really is a much needed confidence boost. Knowing that something I have written has helped or provided comfort to at least one person, makes it all worthwhile.



5. Do you write/talk about other topics apart from your disability?

First and foremost, ‘Life on the Slow Lane’ is a disability blog. Not only do I share personal stories and discuss my own condition, I also cover a variety of disability-related topics and feature interviews with disabled people.
I do occasionally write about topical issues too:

  1. There’s no reason to not vote!
  2. A United Kingdom
  3. Armistice Day: Remember & Reflect

On my blog you will also find a few book and film reviews as well as seasonal posts, such as my Halloween specials.

6. What steps do you take to make your blog accessible to yourself as well as other people?

I do the majority of my blogging from my Android Smart phone. It is so much easier than struggling with a heavy laptop, plus it means I can write and edit anywhere and at any time.

Over time, I have tried to edit the design of my blog, in order to make it more accessible for disabled readers. I like to use large-scale images, clear font, larger titles and subtitles, as well as dividers for visual clarity. I have also chosen two contrasting font colours – red and green. Because of its wavelength, the colour green is generally considered to be the easiest for the human eye to see.

Needless to say, there is much more I need to do, to make my blog as accessible as possible. Until now, I haven’t given this issue a great deal of consideration (so, once again, thanks to Elin for bringing it to my attention). I would therefore be incredibly grateful for any suggestions and recommendations from you guys – please leave a comment!

7. What is your favourite thing about blogging about your disability?

Since becoming a disability blogger, I have been fortunate to get to know many of my peers within the disabled community. Some have even become great friends.
I have received a lot of support and learnt a great deal from other people affected by disability. As a result, my outlook on life has changed somewhat, and so too has my attitude towards my own disability.
I do hope that, in a small way at least, my blog is a beneficial contribution to society. The ability to positively affect and influence other individuals through my writing is incredibly rewarding.

8. What are your top three disability related blog posts that you’ve ever published?

  1. My Life with UCMD
  2. Muscular Dystrophy: A Guide for Parents
  3. My Life: Carers, Hoists & Occupational Therapists

9. Do you think that the disabled blogger/YouTube community is overlooked?

Unfortunately I do think it is very much overlooked. However, I do think things are slowly improving as more disabled bloggers are being recognised and applauded for their great work in raising awareness.

I guess essentially, disability isn’t a ‘cool’, popular or fashionable subject to blog about. A disability blogger is highly unlikely to reach an audience as sizeable as a non-disabled beauty blogger, for example. Disability, though it affects so many people (more than you might think), it is not a universal topic with mass appeal.

10. Do you find it difficult to think of new disability related content to publish?

It can be difficult to think of new ideas and original content, that is both interesting and relevant to my readers. I’ll admit, I do often feel like I’m playing catch-up to other, higher profile disability bloggers (which is ridiculous, I know, and a consequence of my own insecurities). I have to sometimes remind myself of why I’m blogging.

11. Do you think blogging about your disability helps to change people’s perceptions?

I can only hope it does! Changing people’s attitudes and perceptions is a very slow process, and one that requires disability bloggers and campaigners to unite and work together in solidarity. Thankfully, the disabled blogger community is amazing and incredibly supportive – an intimate community that I am proud to be a part of!

12. Who do you tag?

It would be great if EmmaGemmaBloo ‘n’ Stuff, Kerry, Mitch, Aidan, Ross, Lucy, Leah and Gem could join in the #DisabledBloggerTag.

I’d also love to hear from you guys! – please feel free to leave a comment and offer your answers to any of these questions.


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