Tag: SMA

Interview | Disabled Entrepreneur Josh Wintersgill

Josh Wintersgill, 26, was diagnosed with Spinal Muscular Atrophy Type 3 at 18 months old. He has been a full-time powered wheelchair-user since the age of 10.

SMA is a progressive muscle-wasting condition. As a result, Josh requires assistance from carers, though his disability has never prevented him from achieving.

He attended university, completed a placement year, works full-time, started his own business, and is now on the Great Britain Air Rifle Talent and Development Squad. Josh is able to drive a wheelchair accessible vehicle (WAV) and has lived independently since leaving his parental home at 18.

Josh shooting an air rifle ~ Disability Shooting Great Britain

1. University ~ Can you tell us about the process of putting a care package in place and living independently as a disabled student?

During my last year of college, I expressed an interest in going to university. After research with my social worker and factoring my needs and desires, we identified appropriate universities that fit my criteria. I then had to decide on a live-in carer or a care agency. I opted for the agency route in order to be as independent as possible.

Once accepted by the university, I sorted accommodation and started looking for care agencies. My social worker provided me with a list of care agencies registered with the CQC, but it was down to me to make arrangements. The first care agency turned out to be unpleasant! So, after 4 months, I switched to another agency who I remained with for the duration of my university experience.

2. How was your overall university experience?

My overall uni experience was, let’s say, fruitful! From falling asleep in my wheelchair in front of the mirror to having university staff put me to bed within the first week because I was so drunk. It was clear that I was going to make the most of my 3 years at uni!

I got involved with numerous societies and activities to keep myself active and included with the student culture. I had a fantastic time and never experienced any discrimination or abuse. The staff made me feel at ease, allowed me to be as independent as possible, and provided access to necessary resources.

I graduated with a first class honours in IT Management and Business and, 4 years after graduating, I was invited back to receive an Honorary Masters in Technology.

3. You carried out an internship with Hewlett Packard during your studies, and then worked as a cyber security manager. What, if any, challenges did you encounter in finding employment and how does your disability affect your working life?

The general employment process with assessment days, face-to-face interviews and telephones interviews were fairly seamless. Most employers are extremely accommodating if you give them notice and make them aware of your access needs.

I do remember one assessment day with a popular car manufacturer where the activities impacted my ability to take part due to my physical requirements. This may have affected their decision to not employ me, even though I was just as capable, if not more so, than the other candidates. But apart from that, I have not had any issues finding employment.

Obviously, my disability limits me physically. However, as I work in technology it does not affect my ability to do my job. Yes, working full-time is not easy for me, but it’s also important to remember it’s not easy for able-bodied people either.

I have always been the sort of person who just gets on with it. I also believe that with technology making everything more accessible for disabled people, in most cases, our disability should not affect our ability to work. If you have any employer with an inclusive work culture, who is willing to support, understand and give you flexibility within the work place, then for sure you can work!

4. You returned to university to speak to students about entrepreneurship, and inspire them to start their own businesses. How did this make you feel and why do you think it is so important to encourage other disabled people to pursue any entrepreneurial aspirations they may have?

This gave me a sense of achievement and fulfilment. I believe that sharing experiences, whether positive or negative, helps others to follow their own passions and aspirations.

There is a general consensus that employment for disabled people is difficult to find, and arguably this could be due to the lack of inclusive employers. This is what makes the entrepreneurial world an attractive proposition for disabled people – it is flexible, offers them ability to work around their needs, and also avoids the hardship of being in a culture that is not disability confident.

5. You ventured into self-employment and founded AbleMove. Why was this so important to you?

I have always wanted to start my own business. When I realised I could create a product to make travel more assessible for disabled people, it was a no-brainer decision for me.

When you’re working on something you’ve created and can see the life-changing benefits, there is a real feeling of fulfilment.

Josh accepting his £30,000 prize from Sir Stelios (easyJet)

6. In 2018, you won the Stelios Award for Disabled Entrepreneurs from easyJet founder, Sir Stelios Haji-Ioannou. How did that make you feel and what impact has this had on you and your business?

Winning the award gave me a sense of personal achievement and recognition. It gave me a fresh perspective on developing my own business and the benefits it can provide versus working for a large company.

The prize money and a business deal with easyGroup Ltd enabled me to give up my full-time job in order to pursue my own business. This allowed me greater flexibility regarding how I manage my disability.

Award-winner Josh with Sir Stelios
Josh and his family with Sir Stelios at the Stelios Awards for Disabled Entrepreneurs
Josh with easyJet founder Sir Stelios

7. Prior to winning the award, you had to move home and rent within the private sector. What challenges did this present?

The challenges with the private rent sector (PRS) are vast, especially given almost 85-90% of PRS homes are inaccessible for wheelchairs.

After applying for the Stelios Awards, I was told I had to move out of a good sized two bed apartment due to the landlords requiring their property back. Having lived there for 3 and a half years, it was time to start the dreaded challenge of finding a needle in a haystack.

It’s purely pot luck if you can find an accessible house to move into straight away that doesn’t need any adapations.

After fighting with the council and various estate agents, we eventually managed to find a property on rightmove. Now, when moving home I need to consider carers since I rely on them throughout the day. My main PA (personal assistant) was unable to continue working for me, and so I had to re-jig and was then only able to maintain one PA.

Finding an accessible property and then having to manage your care situation around it is extremely stressful, tiring and irritating. On top of this, I was working full-time, getting the business of the ground, doing weekly exercises and training for the Great Britain Shooting Talent and Development Squad.

8. Can you tell us about your invention, the easyTravelseat. What is it and how does it benefit disabled people?

My travelling experiences involve being manhandled from wheelchair to aisle chair and then manhandled again onto the aircraft, which is highly undignified and uncomfortable. I therefore sought to create something that would help me travel in a more comfortable and dignified manner.

The easyTravelseat is a sling/seat combination that is designed to work as an in-situ piece of equipment. It is placed in your wheelchair, and you then remain seated in the easyTravelseat until you reach your destination.

For instance, when flying, you would remain comfortably and securely seated within the easyTravelseat for your entire journey through the airport, onto and during your time on the aircraft and off again.

Once I created it, I realised the many benefits it offers disabled people. It allows users to travel in a more safe, dignified and comfortable way, on all modes of transport. Furthermore, it opens up leisure opportunities such as canoeing, kayaking, skiing and so on. The easyTravelseat enables users to be transferred quickly and easily without having to be manhandled. The user is comfortably seated with their own cushion, a gel pad or foam.

9. Where did the idea for the easyTravelseat stem from, and what did the development process involve?

The development process involved researching the types of equipment already available, and the demand for such a product. I conducted market research to determine whether wheelchair-users would find the product useful. Then we identified a concept and progressed to prototyping in order to test how the seat would work. We then moved on to the point of manufacturing the seat and getting the required medical marking and approvals in place. During this process we had been working initially with airports around the lifting side of the device, including our sling manufacturer and then an airline. We started production in February 2019.

Josh Wintersgill sat outside an easyJet aircraft, ready to try the easyTravelseat

10. Does the easyTravelseat cater for disabled people of all shapes and sizes?

The easyTravelseat will cater for the majority of disabled users with the exception of very young children, bariatric passengers or people with extreme contoured seating.

11. How does the easyTravelseat compare with similar products on the market, such as the ProMove sling or the NEPPT Transfer Evacuation Sling Seat?

The difference with the easyTravelseat is the specific design and application of use for aircraft, whilst ensuring passenger comfort. It allows users to be moved around the aircraft, including during an emergency, and to then disembark the aircraft in a much safer, dignified and comfortable manner. All other slings are designed to be removed and offer no protection or comfort when in-situ.

Josh and carer demonstrating the easyTravelseat
Josh travelling by car, using the easyTravelseat

12. What other assistance do you think airlines could and should be offering to disabled passengers?

I think the most important area airlines should be focusing on in the immediate is the loading of wheelchairs, both electric and manual, to prevent damage. It also concerns me the people on the ground lifting these wheelchairs are at risk of causing serious damage to themselves. There is industry equipment to load wheelchairs onto an aircraft without having to manually lift a wheelchair. This would help the loaders and reduce the amount of damage to both the chairs and the airport staff. Also, a secure area in the hold may also be advantageous to prevent luggage damaging wheelchairs during turbulence.

I also think the UK should be pushing (as Canada has done successfully) the airlines to provide free tickets for a carer when flying with a disabled person. After all, the airlines make it a necessary requirement for WCHC passengers who cannot move without any support to fly with a personal assistant/carer.

Airlines should also be addressing the toileting situation inside the cabin too. It is currently impossible for the majority of disabled passengers to access the toilet whilst flying.

Regarding hidden disabilities, there are those who are much more calm when they are surrounded by objects which are all different colours.

Long term, all airlines should be looking to allow wheelchair-users to remain seated in their wheelchair, inside the cabin, during the flight.

13. What does the future hold for you and your business?

The future is bright for easyTravelseat! We are off to a steady start with interest across the globe. We believe in an accessible aviation world and are able to provide an immediate solution to help reduce some of the significant problems with maintaining safety, dignity and comfort when flying with a wheelchair.

We will now look to ensure easyTravelseat is easily accessible in as many countries across the globe as possible in the coming years.

easyTravelseat.com

Thanks to Josh Wintersgill for answering my questions. 

Interview | The Trailblazing Women of Muscular Dystrophy UK

5 Questions ~ 3 Influential Women

Emma Vogelmann (left) with Lauren West (right)

Lauren West, Trailblazers Manager

Michaela Hollywood, Co-Founder

Emma Vogelmann, Employability Officer

Michaela Hollywood (centre, front) campaigning with MDUK

1. What is your disability and how does it affect you?

Lauren West: I have SMA (spinal muscular atrophy) Type 2. I’ve never walked independently and got my first powered wheelchair at the age of two and a half.

Despite the severity of my SMA, I passed my driving test, went to university three hours from home, and moved to London to start my working life. I now still live in London with my partner and with support from live-in PAs who do all my personal care and domestic tasks.

Michaela Hollywood: I have SMA (spinal muscular atrophy) Type 2. I commonly say that I can do pretty much nothing without assistance except speak! Although, I have recently learned to drive using hand controls.

Possibly the biggest impact of my SMA is my breathing and the impact of chest infections, which can make me sick quite often. I’m also deaf, and have pancreatic insufficiency which affects my ability to digest food, and that can cause a lot of pain and fatigue. My motto is; I can drive a van, and boil a kettle but I can’t make a cup of tea!

Emma Vogelmann: I have SMA (spinal muscular atrophy) Type 2. I’m a full-time electric wheelchair-user and since contracting Swine flu in 2009, I also use a portable ventilator via a tracheotomy.

2. How and why did you become involved with MDUK Trailblazers, and what is your role?

Lauren West: I became involved at the very start of Trailblazers, after I left the Whizz-kidz Kids Board. I felt I had a campaigning void in my life after leaving the board, so I was really excited when I heard about Trailblazers. For a long time, I was the only Welsh Trailblazer and so I formed a great bond with the original team, Bobby and Tanvi.

I stayed involved throughout university through participating in work experience and attending events like APPGs. I was delighted after a few years in different jobs to be offered the role as Campaigns Officer, as I’d always wanted to work for Trailblazers. It was then super exciting to take up the role of Trailblazers Manager at the beginning of 2016.

Michaela Hollywood: I was involved with Trailblazers from the very beginning, before it even started!

I was at a MDUK Family Weekend when I was 16, and, because of my disability and access requirements, I couldn’t book tickets to see the band McFLY perform in my local arena. Consequently, I spoke to the then Chief Executive of the charity Phil Butcher, and said we need a “young people’s forum”. My idea at the time was that those of us with a muscle wasting condition have powerful voices that weren’t being heard, and too many non-disabled adults were making decisions that affected our lives without even thinking of consulting us. And out of that Trailblazers was born!

I volunteered for the first number of years, and directed the organisation from Northern Ireland for a year before it became official. I went to university and did my undergraduate degree in Public Relations, followed by a Masters in PR and Communications, specialising in political lobbying. I then joined the team from home in Northern Ireland a little over 3 years ago.

Emma Vogelmann: I was invited by MDUK to a Parliamentary roundtable meeting about disability employment. I really liked that a prominent charity was directly engaging with young disabled people and their lived experiences. After that, I asked if there were any opportunities to get involved with the organisation which led to a 4 month internship with the Campaigns team. I absolutely loved it, so when the role of Employability Officer was advertised I knew I had to apply. The rest, as they say, is history!

Michaela Hollywood, who has SMA Type 2

3. How do you feel about being an influential career woman with a disability? Has your disability made you more determined to pursue your career goals?

Lauren West: I don’t think I would describe myself as an influential career woman but if I am seen that way, then that’s a real honour.

I think my disability has made me much more determined in all parts of my life, not just my career. I have always been quite driven and even when I wasn’t sure what career path I wanted to follow, I knew I wanted to do something that made a difference.

But I genuinely think there’s been one driving force behind my ambition and that was a social worker who was sorting out my university care package. She made an off-the-cuff comment about how when I was done having fun at university, I’d come home and she’d help set me up on benefits in a little flat. Whilst this is needed for some, this is not how I wanted my life to go, but I knew I’d face similar beliefs and attitudes throughout my whole life. So I was determined to fight against that societal expectation.

Michaela Hollywood: For me, I think it made my education very important. And it’s made me steely and determined. It’s a good advantage to be able to use my voice as communication is so important when your impairment is so physical. I’m proud to be in the position I am, and try to keep my focus on what I can do for others.

Emma Vogelmann: I never really thought of myself as an influential career woman in all honesty. I suppose you just crack on with your day-to-day work, so you never stop to think about it.

Now I am starting to see the impact my work has on other people, such as my employment work. I’ve seen the people involved in my project access jobs, find a careers mentor and so many other meaningful changes. That’s incredibly rewarding for me.

My disability makes me more determined to do a lot of things, but definitely in my career. Someone in a meeting I ran summed it up perfectly, “disabled people feel the pressure to be exceptional just to be considered equal to their able-bodied co-workers”. While this is not the culture at MDUK, I do feel that internal pressure to prove myself constantly. I’ve learned first-hand and from others that it is unfortunately really hard to enter the working world as a disabled person, so once you’re there you feel like you need to show your employer why they made the right decision.

Lauren West, who has SMA Type 2

4. In relation to employment, what challenges have you faced due to your disability, and how have you overcome these obstacles?

Lauren West: Throughout school and university, getting a typical student job just wasn’t on the cards for me. For one thing, I just didn’t have the stamina to study and work. But also the usual student jobs just weren’t physically accessible to me. I was worried that this lack of work experience would put me at a severe disadvantage for getting a job once I’d graduated.

I was lucky that Trailblazers found me an internship at my local MP’s office, so I did one day a week there for three months in my final year of study. I also did work experience at MDUK which gave me a great taste of living and working in London.

I was incredibly fortunate to secure a job in London prior to graduating from my Master’s degree. However, when this job turned out to not be what I expected and complete with a very abusive boss, I had real trouble finding a new job. I mainly applied to charities and many claimed to be part of the ‘two ticks scheme’ which offered guaranteed interviews for disabled applicants.

However, it was rare I’d even get called for an interview and it took many unhappy months before I was offered a role as a mental health advocate. The same year, I started working for MDUK and I love being part of a charity that values diversity and inclusivity.

I think the only way I’ve overcome challenges within employment is just through stubbornness and determination. I really think there are organisations out there for everyone but it can just take a long time to find the right fit.

Michaela Hollywood: The biggest one is my health. Self-care is important to keep me ticking over. I’ve been really lucky to work for a group I wholeheartedly believe in, and where we see real help and progress happening. I try to make sure others are afforded the same opportunities I have been lucky to have.

Emma Vogelmann: I struggled to find an employer willing to give me a chance after university. Of course, this is true for most graduates. But I do feel that being a disabled graduate made it harder. I remember asking Lauren West for advice before I started working at MDUK about when, where and how to disclose my disability, because I didn’t want to be counted out too soon for jobs, but I also didn’t want to hide something I consider a strength. I decided to always disclose my disability, though this is a very personal choice that isn’t necessarily right for everyone. I work within a disability charity, so it is extremely relevant to say I’m disabled, but I know a lot of people who aren’t comfortable with this and that’s completely okay too.

Emma Vogelmann, who has SMA Type 2

5. What is your proudest achievement?

Lauren West: In terms of in my career, I think it was being in charge of the Trailblazers’ 10 year anniversary celebrations.

As someone who was part of Trailblazers from the start, being able to bring those 10 years together through an incredible event in Parliament was just the best experience. Seeing over 100 people all in one room celebrating their successes of the past 10 years will be forever one of my best moments.

Michaela Hollywood: This is a tough one! My dad, Michael, likes to tell anyone and everyone he meets to “Google” me because he is so proud of what I’ve achieved.

In 2015, I was given a Points of Light award by then Prime Minister David Cameron, and a few weeks later was named on the BBC 100 Influential Women List. I think those few weeks were a definite highlight.

Emma Vogelmann: What a tough question! I suppose it would be winning my case against a taxi driver who discriminated against me due to being a wheelchair-user. It happened on my second day of work at MDUK and it was a difficult experience to go through. But to have two courts agree that wheelchair-users cannot be overcharged was a great feeling. I really hope it will empower other wheelchair-users to not accept discriminatory treatment from taxi drivers.

Many thanks to the brilliant Emma, Lauren and Michaela for answering my questions.

Interview | Singer-Songwriter with Muscular Dystrophy

Tabi, who has SMA Type 2, on her debut album, ‘I Wrote Life’

Album cover for ‘I Wrote Life’, by singer-songwriter Tabi

Tabitha ‘Tabi‘ Haly is a 35 year-old singer-songwriter from New York City. She has Spinal Muscular Atrophy Type 2, a progressive condition, causing muscle weakness and contractures.

Tabi cannot walk and therefore uses a powered wheelchair for mobility. She is now unable to use her hands to feed herself and uses voice dictation software. With 24/7 support from “home health aides” and physiotherapy to maintain as much strength as possible, Tabi leads a highly proactive lifestyle.

I recently had the pleasure of talking with Tabi about her music career and debut album entitled, ‘I Wrote Life’, (released January 2019).

Tabi, what and who are your biggest music influences and why?

I grew up listening to classic rock, pop and R&B, but I appreciate all genres. I enjoy catchy, soulful melodies, so that has heavily influenced the songs on my album. I am most inspired by artists who write their own songs because that is what I like to do. I love timeless songs and I feel motivated to write when I hear something that I wish I had written myself. I also admire artists who write about personal experiences.

I love Mariah Carey because she writes songs that touch upon insecurities and feeling like an outcast. She writes about her faith and she has clever lines and an impeccable vocabulary. I also love singer-songwriters such as Anna Nalick, Sara Bareilles, Christina Perri, and Jason Mraz. They write about love and heartbreak, which I can relate to.

I also admire a wide vocal range because it is fun to sing songs that are vocally challenging. That is when my R&B influences come into play. It’s really enjoyable to improvise and jam along. I like to challenge myself in general, so I definitely apply that to my music in terms of the lyrics, melody, and vocal styles.

Tabi performing live in her powered wheelchair

How would you describe your debut album?

I would describe my album as real and soulful. I allowed myself to be vulnerable to reveal my struggles and hopes regarding my disability, love, and life in general. The different subjects lend to the spectrum of dark and light tones.

My album is also fun, diverse, and uplifting! There are a lot of upbeat, empowering songs. People like to dance to them, and it was definitely a blast recording them.

The album is diverse because it crosses multiple genres including R&B, pop, blues, and reggae. It was difficult to select which songs to put on this debut album. Ultimately I wanted to make sure there was something in there for everybody. The order of the tracks matters to me because it tells a story and hopefully feels like you are being taken on a memorable and moving journey.

Tabi proudly holding her framed debut album

How autobiographical is the album, and why was it important to you to write the songs yourself?

This album is my baby! I know people use that term a lot in reference to personal projects, but I intentionally released it on my 35th birthday. At this age, many women, myself included, start to worry if they have not yet had a baby.

SMA presents challenges in every part of my life, but I am highly ambitious and set out to conquer my goals. I haven’t yet had a baby, so until then, this album is my baby. As an artist, it is my portfolio.

This album epitomises all that I have accomplished thus far; buying my own home, getting through college via financial aid and scholarships, having a successful full-time career that allows me to be financially independent, owning my own wheelchair accessible van, volunteering regularly, helping implement change for people with disabilities, writing and managing my music, managing my home health aides, being a motivational speaker, and being able to perform throughout New York City at cafés, bars, church, and schools.

As great as this is, it does cause alot of stress, sweat and tears! So I hope people enjoy the album and heed the message that faith and hard work have afforded me the life I have. This allows me to remain positive and to inspire myself and others.

Tabi smiling on stage, performing songs from her debut album entitled, ‘I Wrote Life’

Is important to you to inspire other disabled people who may have musical aspirations?

It is, especially since we are now at a time where there are so many groundbreaking opportunities. A few years ago, I saw many people with disabilities acting on Broadway, which took my breath away and really inspired me to continue doing what I’m doing. I would love to inspire, or better yet, collaborate with other musicians with disabilities.

During the bridge of my song ‘keep rolling on‘ I sing, “there’s so much left to change, more than we even think. More face in media, presence in arenas”.

Tabi, dressed head-to-toe in purple, holding a card displaying the hashtag #IWroteLife to promote her debut album

Have you faced any opposition, challenges and/or stigma on your journey to becoming a musician, due to your disability?

Surprisingly, the biggest challenge is sometimes getting onto the stage to perform! Most stages are not wheelchair accessible, so I have to be prepared for that. Another major challenge is having less live music venues to choose from because not all of them are wheelchair accessible.

Tabi performing live in NYC alongside her guitarist

How do you overcome these obstacles?

In the early days, I didn’t want that to be an issue or a dealbreaker when pitching to venues to book a show. So I would have my band members and friends lift me in my wheelchair on and off the stage. I have a powered wheelchair that weighs at least 300 pounds! So that was a lot to ask, and I am thankful for the support. This still happens sometimes, but I am now more confident about asking venues to consider investing in a ramp.

There are still the same challenges surrounding the inaccessibility of venues, both for the performers and attendees. I think this is just one of many accessibility issues that exists and for which we need to implement improvements.

You were the opening performer at the first ever Annual NYC Disability Pride Parade in 2015 to celebrate the ADA’s 25th anniversary. How did that make you feel?

That was such an amazing feeling! I had just started using my wheelchair again after having been stuck in bed for a few months due to ill health. So this experience was a huge comeback and it was an honor to be a part of this event. I have to reflect on this sometimes and remember how privileged I was to perform outside, in front of so many people, during the first parade specifically for people with disabilities.

I would like to thank the lovely Tabi for taking the time to answer my questions. Her brilliant debut album, ‘I Wrote Life’ is available to purchase and download NOW!

Follow Tabi on social media:

Twitter  Facebook  Instagram  YouTube

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!

Interview | Kat Pemberton

Image description: photograph of Kat Pemberton in her powered wheelchair.

“My life is so much more than my disability!”

Kat Pemberton is a successful Vlogger, disability activist and model for Zebedee Management.

The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.

Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.

Spinal Muscular Atrophy

1. Kat, please tell us about your disability and how it affects you.

I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.

I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.

SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.

When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.

I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.

Life as a disabled Model

2. How did you become a model and what does this mean to you, as a young disabled woman?

I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.

When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.

Zebedee Management

One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.

I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!

Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.

Campaigns

I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.

Image description: campaign photography, by Sophie Mayanne, for the #BehindTheScars project.

In February 2018, I got to work with photographer Sophie Mayanne on the Behind The Scars project.

I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.

Image description: campaign photo of Kat Pemberton. #BehindTheScars

I also participated in the amazing Portraits of Pride campaign for HSBC, who sponsored London and Birmingham Pride.

Image description: a collage of images depicting Kat’s experience with the #PortraitsOfPride campaign.

I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.

Image description: a portrait of Kat Pemberton, painted for the #PortraitsOfPride campaign.

Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.

Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.

It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.

YouTube Vlogger

3. Kat, could you please tell us about your Youtube channel?

Image description: Kat’s YouTube banner.

I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.

I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.

I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.

Image description: a collage of screenshots from Kat’s YouTube videos.

I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.

I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.

Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.

I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!

Disability Activist

4. You describe yourself as a disability activist. What are the issues that are most important to you?

I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?

I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!

I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!

I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with Fixers UK, where I spoke to sponsors about my film and promoting disability awareness.

https://www.youtube.com/watch?v=A_Bp9kFNim8)

Following that, I modelled for the BooHoo ‘All Girls’ campaign to promote diversity in society.

Image description: Kat Pemberton modelling for the Boohoo #AllGirls diversity campaign.

I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.

Image description: Kat speaking at the WoW festival.
I’d like to thank Kat Pemberton for taking the time to answer my questions.
Twitter, Facebook, Instagram, YouTube

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

Interview | YouTuber Shelby Lynch

20 year-old Shelby Lynch is an up-and-coming YouTuber from England, who happens to have a muscle-wasting condition similar to myself.

She was recently kind enough to chat with me about her disability, life as a YouTuber and her involvement with the Missguided #KEEPONBEINGYOU campaign.

1. Could you please tell us about your disability and how it affects you?

My disability is called SMA (Spinal Muscular Atrophy). This causes my muscles to become weaker over time. I have a curve in my spine (scoliosis) and am unable to walk, so I use a powered wheelchair to get around. I also need to use a ventilator 24/7 to help me breathe.

2. What have you found to be the biggest challenges of living with your disability?

The biggest challenge of having a disability is having to rely on other people to do things for you. My daily life is affected – I need help with simple things like getting around, eating and personal care. I’d love to be able to do my own hair and makeup.

Also, not having as much independence as someone my age should. Independance for me is key.

3. What, if any, do you feel are the positives to having a disability?

There are a lot of perks! For me, the biggest positive that comes with having a disability is getting to skip the queue for certain things. Sometimes I can get free access to certain places too. But then others do take the piss and charge disabled people more than they would an able-bodied person.

4. Can you please explain why you decided to become a Youtuber?

I wouldn’t say I’m a successful YouTuber but if I’m helping people in a certain way then that’s cool. I started watching YouTube around four years ago. I thought it looked really fun so I decided to make a channel too. On my channel I talk about fashion, beauty, lifestyle and my disability.

Really, I just want to have fun with it to be honest. I want to show people that I’m just a regular 20 year old who enjoys doing what other people like to do. Whether it’s going to concerts or hanging out with friends.

5. Do you consider yourself to be an inspiration?

No, I don’t consider myself to be an inspiration unless I have done something to impact people. People usually call me an inspiration just because I’m disabled but to me, that’s not right.

6. Can you talk about your involvement with the Missguided campaign, and what it means to you?

I saw their campaign on Instagram and really liked the fact they were showing different types of people. So, I took a picture of myself wearing one of their jumpers, and used the hashtag #KEEPONBEINGYOU.

Only a couple of hours later they had reposted my picture. It was so overwhelming receiving so many nice comments from people I didn’t even know. Then somebody from Missguided contacted me, offering to send some clothes, and asking if I would like do a mini photo shoot and video for their campaign which felt like a dream!

Working with them was absolutely incredible! When they asked me if I would join their campaign I was over the moon. It was such a great start to the week. I was a bit nervous as I have never done anything like this before.

But Missguided is a brand that I actually love. And I feel like their clothes are different to any other fashion retailer. The clothes make me feel confident and cool, so getting to work with them was a dream come true.

In addition, it’s great that they aren’t afraid to break barriers by showing some diversity in their campaign. This is something I personally respect so much.

In my caption for my picture I spoke about how disabled people aren’t often seen as pretty or sexy because of their disability, and that’s not the case. We should feel empowered no matter what.

– “Keep On Being You means to be confident in your own skin, and not letting anyone in life tell you that you can’t do anything.”

I hope they ask me to work with them again as it was so much fun and they are certainly leading the way in showing diversity as a fashion brand.

Find out more about Shelby’s involvement with the Missguided #KEEPONBEINGYOU campaign here.

Follow Shelby:
Twitter

Instagram

Youtube channel

Pinterest

Blog

          I’d like to thank Shelby for taking the time to speak with me!

Get To Know Me | Interviewed by Wheelescapades

I recently collaborated with fellow disability and lifestyle blogger Gemma Orton, aka Wheelescapades, on a ‘20 Questions‘ blog post.

We initially got chatting on social media and found we had a few things in common ~ We’re both arty/crafty types, we have a mutual love for all things Disney, and we are both wheelchair users. Gemma has Spinal Muscular Atrophy Type 2 (SMA2), while I have Ullrich congenital muscular dystrophy.

To get to know each other even better, we gave each other free rein to ask 20 personal questions!

Here you can find my previous post, in which I interview Gemma.

And below are my answers to Gemma’s 20 questions…

1. What made you decide to write a blog?

I had been thinking about it for a long time, though it took me several months to begin. I wanted to do something productive and worthwhile but didn’t think anyone would care or be interested in what I have to say.
They say you should write what you know. I have been disabled since birth and so consider this my expert subject. However, disability isn’t a particularly popular or fashionable topic to blog about. I knew it would be a challenge and it has been. I do feel like I’m constantly playing catch-up and at times I wonder if it’s worth the time and effort. But when I receive positive responses from complete strangers, I am reminded why I’m doing it.

2. What do you want your blog to achieve?

I want to raise awareness of muscular dystrophy, particularly Ullrich congenital muscular dystrophy which is the rare and little-known form that I have. I want to share my thoughts and experiences, having lived my whole life as a physically disabled individual, in the hope that it may in some way help others.

3. What is the most difficult thing for you about having a disability?

Blimey, I could write a list! There are many challenges and frustrations. My condition is progressive and so the difficulties become greater with age. I think perhaps, for me, the most difficult thing about living with Ullrich congenital muscular dystrophy, is the limitations it inflicts. I am limited physically – I cannot run, dance, walk or even weight-bear. Just to be able to stand and support my own weight would make a world of difference! I am life-limited! Yes, UCMD is a life-limiting condition. I will not grow old or see my new baby nephew become an adult. Furthermore, my quality of life is limited. To put it briefly, when I am ill I’m REALLY ill. I have spent much time in hospital with respiratory related issues including repeated bouts of pneumonia, pleurisy, and a collapsed lung. I have literally lost months of my life to UCMD – housebound, unable to eat and reliant on non-invasive ventilation.

4. What is the biggest positive about having a disability?

The positives are much more light-hearted! Concessions, being able to skip to the front of the queue and designated parking (although disabled bays are often occupied by sports cars lacking a blue badge!)

5. If you could only eat one food for the rest of your life what would it be?

Hmm, tricky! I do like variety. I guess I’d have to choose… mash potato?! That way I could always mix it up by adding herbs from the garden (or is that cheating??)

6. An apocalypse is imminent, you have 30 minutes to prepare, what 3 items do you pack?

Well, I guess if the apocalypse is coming then it doesn’t really matter as we’re all doomed anyway?! But, I think I would still pack a bottle of Lucozade (I live on it! Purely for the energy boost), my dog and my family!

7. When making tea would you pour the milk or water in first?

Water!

8. What is your favourite way to relax?

I like to shut myself away, snuggle up in bed or on the sofa, and listen to music or watch a good film.

9. If you could interview any human, dead or alive, who would it be and what would you ask?

Wow, I really don’t know. God! (who I don’t believe in – what a cop-out) He has a lot to answer for.

10. What would be your dream job?

I’m one of those people who never knew what they wanted to do. I’ve never been career focused or academically ambitious. All I ever wanted was to have kids! But, if I could be absolutely anything, I think I’d be a dancer. I’ve always loved everything about dance. And yes, I’m a huge Strictly fan!

11. You’ve just won 10 million pounds (congratulations!), what 3 things would you do with the money?

Sort my family out – erase any debts and buy them homes, cars and whatever else they might need or want. Make sure my closest friends are comfortable! Buy a holiday home(s). And finally, a home for myself, FULLY adapted!

12. Where in the world would you most like to visit and why?

Australia. For as long as I can remember I have always wanted to visit Australia. The snakes are a little off-putting but still, that’s where I’d head to first. Closely followed by America. I’d absolutely love to do a road trip – Route 66!

13. What one thing would you change about yourself?

Only one?! Again, I could write a list. Buy I’d have to say my body. It doesn’t work too well and I’m flipping uncomfortable in it!

14. If you could play any part in a film, past or future, real or fiction, who would you be?

Men get all the really great roles! So, if I were male I think I’d play the Joker in The Dark Knight. How much fun would that be! Since I’m not a man, I’d play… I don’t know!! Maybe one of the sisters in A League of Their Own (1992) or Uma Thurman’s roles in either Pulp Fiction or Kill Bill.

15. If there was a pill that would freeze you at your current age and you could live forever as you are now, would you take it? And why?

Nope, definitely not. I wouldn’t want to live forever. It would get pretty boring after a while! Plus outliving all my family and friends would be hell.

16. If you could trade lives with one person for an entire day who would it be and why?

My brother. He has the life I’ve always wanted. He is physically fit, handsome, funny, charming, popular, successful and he has a lovely wife, baby and home. Of course I don’t resent him for it and I want nothing more than for him to be healthy, happy and fulfilled. But to experience his life for just one day would be bliss. I’d never ask for anything else.

17. If you could time travel, where would you go?

Good question. There are so many periods throughout history that I’d like to visit. But it would be great to go back around 50 years, when my parents were kids and my grandparents were young. I never knew my maternal granddad who died when I was a baby. So I’d especially love to meet him.

18. If you were made Queen and allowed to pass one new law, what would it be, and why?

Argh, the pressure! I have no good answer to this. So I think I’ll just say longer sentences and harsher punishments for serious crimes. There really is no deterrent in this country.

19. What personal trait has gotten you in the most trouble?

Voicing my opinion and failing to filter! Over the years I have become more outspoken and more impassioned about certain issues. I tend to over-analyse and question everything. Oh and I am rather stubborn. If I believe something in something, I won’t budge.

20. As a child, what did you wish to become when you grew up?

Just happy I guess. As I said before, I never had a particular job or career in mind. I’ve considered various options and ideas over the years. But all I ever really wanted was a home and a family of my own. That’s it. Not much to ask, eh?

I don’t think it is.

I really hope you enjoyed this collaboration with Wheelescapades. Let me know in the comments.

I’d also love to hear from you and find out how you would answer these questions!

To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

Getting to know… Wheelescapades | 20 Questions

One thing I love about being a disability blogger is the fact that I am able to interact with other like-minded bloggers.

I recently got chatting with the lovely Gemma over at Wheelescapades. We quickly realised we have a fair bit in common: we’ve both studied art, we have a mutual love for all things Disney, and we both have muscular dystrophy, albeit different forms.

So, we thought it would be fun to collaborate on a blog post. To learn even more about each other, we decided to ask 20 juicy questions. You can find my answers to Gemma’s questions over at her blog!

Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

I wouldn’t say I’m the ambitious type. There’s lots of things I’d like to see and do as you’ll find out throughout my answers. But when it comes down to it I’d just like to be content and happy. For my friends and family to be too. It’s the simple things that make life.

2. What is your dream job?

I love anything arty and creative. I’m too indecisive to give you one dream job title, but I’d like to be in an atmosphere where I am surrounded by creativity. I enjoy making things, drawing, textiles and I’m going to say I would like to work in theatre design, costumes and props.

3. What do you most regret?

I don’t think I have any major regrets. That’s no way to live.

I do often regret not ordering dessert when I’m out with friends and theirs arrives leaving me sugar craved.

4. If you could live anywhere in the world, where would it be and why?

Although there are so many places I’d love to visit, I think I’m perfectly happy living where I am. I love England, it’s history, its heritage, the traditions, and yes the weather! I know it’s something everyone moans about, I’m guilty of that too. I know it can be unpredictable and awfully grey at times, but I like the differing atmospheres. We are lucky enough to get sun, snow and thunderstorms, but nothing too extreme or scary.

On a smaller scale I like the area I live in, Norfolk. I’m in a small town, not far from the city, the sea and the countryside. Norwich is a diverse city of art, architecture and music. I can also easily get to London.

5. Dream dinner party guests: if you could invite any 5 people, alive or dead, who would you choose and why?

Alexander McQueen, Tim Burton, Andy Warhol, Stephen Hawkins, and Banksy. All creative, passionate and intelligent minds that know what they are/were and do their thing with conviction. Need I say more.

6. If you could visit any time period throughout history, when would it be and why?

Well I don’t think wheelchair access is going to be very reliable however far I travel back. As a mega Downton Abbey fan I’d love to dress 20’s style and attend one of Lady Mary’s Luncheons.

I’d also love to go back and spy on myself as a child, my Mum as a child or my grandparents.

7. If a genie were to grant you any 3 wishes, what would you wish for?

This is the one I’ve been struggling with (I take these questions seriously!). Do I go for the big things: world peace, a cure for SMA, an end to poverty?? Or the smaller stuff like a fully accessible luxurious house, enough money to help friends and family, to have a talent that can make me a living?? Basically it depends how good this genie is and what the rules are. There are always rules and consequences to these things! Maybe I shouldn’t rub the lamp…

8. What is your ideal holiday?

My dream is to visit Florence, Italy. The complications, discomfort and fear of losing or breaking my wheelchair has meant that I haven’t flown since I was a child.

I’m not a ‘by the pool girl’, although I do love a spa! My ideal holiday would involve seeing the sights, being around the locals, visiting little cafes, museums and galleries, plus a wheel along a river and cocktails on a roof – With warm but not sweltering weather. Don’t ask me where this destination is, although I’m open to suggestions.

9. If you were Prime Minister for one day, what would you do?

Cancel Brexit. Can I say that? Shouldn’t we have learned by 2017 a united world is a better world.

I think I might need longer than a day!

10. Who or what inspires you most in life?

I can be inspired by the simplest things. I wouldn’t say that one event or person has inspired me to be something. It can be a book I’ve read, a chat with a friend or a film I’ve seen. All these things can inspire thoughts, make me want to be a certain way or do a certain thing. In fact, I am often inspired just people watching. Seeing how people react can trigger a thought or idea.

11. Could you please share 3 interesting facts about yourself?

  • I won first prize in a national textile design competition. My prize was to visit Première Vision in Paris.
  • I eat almost everything with a fork, including Wotsits.
  • I haven’t seen my natural hair colour since I was 16. I’ve had almost every colour, including blue and red at the same time. I’m now 32.

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

13. If you could spend one day in someone else’s shoes, who would it be and why?

Can I say my cat even though they don’t wear shoes?

I’d lay around on the windowsill, worry free, watching the day go by. Maybe take a little nap and have some chewy treats. Get “cooed” and massaged on the head if I’m good.

14. What is your biggest fear?

Spiders! I really do hate them. And unfortunately most of my PA’s do too. I didn’t think of that question when I interviewed did I?! – Job title ‘spider catcher’!

Umm on a more serious note… everyone’s fear: losing family and friends.

Disability-wise: losing strength, the independence I have and communication.

15. What annoys you most?

Although you haven’t read question 18 yet, you can refer to it here.

I think moaners annoy me the most (yes I know I moan too, we all do). You know those people that make a big deal of nothing. I know everybody is different, we all have our issues and our weaknesses. But people, stop sweating the small stuff and appreciate what you’ve got. Enjoy the washing up! Appreciate the walk to the shop for milk to make yourself a brew. Yes you’ll get colds, and they are irritating, but the likelihood is you’ll be over it in a few days.

16. What makes you happy?

Being around friends and family, my cats, a day in the sunshine and drinking tea. Netflix days, ache-free days, a facial at the spa, a good book, Seeing the end result of my craft project, festivals and the outdoors too!

17. If your life was a novel, what would the title be?

‘Wheelescapades’ – the title of my blog, as that took me long enough to think up. I’m no good at these things.

18. What is your disability, and what frustrates you most about it?

I have SMA 2 (Spinal Muscular Atrophy Type 2).

I think it’s probably the small things that frustrate me the most. The little day-to-day things that most people take for granted. Yes I’d love to travel the world problem free and have an amazing job without limitations. But it’s not just me, and my disability that doesn’t get that.

What I’d like is to be home alone (with at least 7 cats), make myself a brew, switch on the TV, do all the crafting I want and get up for a wee when required! I’d love to fall into bed exhausted (without connecting my feed and breathing machine), sleep comfortably and uninterrupted and meet a friend for breakfast at the drop of a hat. I’d even be up for doing the washing up!

Also I’d quite like to just have a cold without wondering if/when it will put me in hospital.

19. In theory, if a magical cure were available, would you want it or not?

Okay, I know I’m probably supposed to say no here, as someone who is trying to change people’s perception of disability, blah blah… But yes, I would take that cure. I wouldn’t change my past life for anything. If I could keep the knowledge I have, the friends and family I’ve got and the experiences I’ve been through, then yes, give me that cure!

20. Why did you become a blogger?

I get into some awkward, funny and difficult situations mainly due to my disability. I also get different experiences and treatment with/from people because I am a wheelchair user. My friends and I would always joke about this; the good and the bad, as a way of coping I guess. Sometimes you have to laugh or you’ll go crazy. Often saying “if only people could hear us” or “I should write a book of all this drama”. Well I guess blogging is my book of tales.

I also wanted a serious side to the blog. Not many websites give you the gritty details of a venue’s (in)accessibility. Yes, they are starting to declare themselves ‘wheelchair accessible’ or claim to have an ‘accessible toilet’. Bbut accessible can mean so many different things. Just getting through the entrance doesn’t make a venue accessible. I wanted to chart good and bad access and to get people to look at it more.

I’d like to thank Gemma aka Wheelescapades for taking the time to answer my questions, and for being so candid!

I’d also love to hear from you! How would you answer my 20 questions?? Please leave a comment.

To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/