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!”


Next week: 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.

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

Guest Post | Home Healthcare Adaptations

Today’s post is a guest feature from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled. 


How Seniors Can Feel More Secure At Home

It is frightening just how many older people’s homes are subjected to burglaries and break-ins. Worse still, seniors themselves are targeted by malicious criminals with no respect for human life.

Thankfully, there are measures such as alarm systems, CCTV and doorbell cameras which can improve the security of a person’s home. These could be well worth investigating for elderly relatives.

All too often, we hear about elderly citizens having their houses burgled or, even worse, being attacked in their own homes. It takes an especially cowardly individual to deliberately intrude upon an elderly person’s homestead and threaten to inflict violence on them, but sadly these types of incidents occur with regularity.

Therefore, we should advise elderly relatives living in their own houses to take no chances when it comes to home security. No matter how much a security system or other measures might cost to install, the value to be derived from the peace of mind that it’s there is 100% worthwhile.

If an elderly parent living by themselves knows that their home is as secure as it can be, they will feel far more comfortable and we will be at ease knowing that they feel safe.

Home security has been made easier with the advent of automated systems which enable homeowners to set alarms remotely, switch on lights at timed intervals and monitor the house while away.

A burglar will usually be able to tell when a house is unoccupied, so even if they feel that the opportunity is right to strike, home automation can catch them in the act and allow for corrective action to be taken straight away.

We should also check in on elderly parents or neighbours regularly and advise them on small things that they can do to improve the security of their home. Simple measures like giving a house key to a trusted friend or family member instead of leaving it under a welcome mat, or keeping any valuable items obscured from the viewpoint of anyone looking into the home, will help to make them feel more secure.

The infographic below from Home Healthcare Adaptations offers some sensible pointers on how you can make elderly parents feel more comfortable and secure in their homes.

Follow Home Healthcare Adaptations on Twitter

Carers Rights Day

Life with PAs

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

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

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

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

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

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

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

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


Carer’s Allowance

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

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

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

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

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

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


My Open Letter to Carers/PAs

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

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

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

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

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

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

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

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

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

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

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

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

#CarersRightsDay2018

Strictly Come Dancing 2018

Disability, Diversity & Representation

Following on from Paralympian Jonnie Peacock’s influential appearance on last year’s Strictly Come Dancing, the latest line-up includes Para-triathlete Lauren Steadman and acid attack victim Katie Piper. The former has no lower right arm, and the latter suffered significant facial disfigurement following a violent attack when she was only 24 years of age.

The inclusion of these two young women on such a high-profile BBC One talent show, with viewing figures in excess of 11 million, will no doubt play a big part in the promotion of positive views on disability and diversity, as well as encouraging body confidence.


Katie Piper – Acid attack victim and charity founder

35 year-old TV presenter, author, philanthropist and charity campaigner Katie Piper was left permanently scarred after a vicious acid attack in 2008. The former aspiring model has subsequently undergone over 60 necessary surgical procedures.

The industrial strength sulphuric acid that was thrown in Katie’s face has caused extreme damage and left her with sight, swallowing and breathing issues, requiring ongoing, invasive treatment.
The perpetrator was instructed to carry out the callous attack by an abusive former boyfriend whom Katie had met online.

Over the past decade, Katie has found admirable strength and persevered through the most trying of times. She bravely shared her story in two autobiographies and the 2010 BAFTA winning documentary, ‘Katie: My Beautiful Face’.
Katie has written four more self-help books, fronted several televised shows relating to body disfigurement, and most notably established The Katie Piper Foundation, to support fellow victims of acid attacks. She is also now happily married and has two young daughters.

Katie & Strictly Come Dancing

Prior to being paired with professional Strictly dance partner Gorka Marquez, Katie said, “there was a time not long ago that I wondered if I’d ever be glamorous again and now I know that is going to happen!”.

Katie Piper is all about embracing body confidence and celebrating diversity, whilst raising awareness of the consequences of acid attacks, which is a crime that is sadly on the increase. Her appearance on this hugely popular primetime BBC show will enable her to reach a wider audience and spread that message.

Piper is acknowledged to be the most anxious of this year’s celebrity contestants. Having really struggled to overcome the nerves during her first performance of a Waltz to Adele’s ‘when we were young’, Katie scored 17/40. Her confidence was knocked by negative feedback from the judges, particularly Craig Revel-Horwood who did not hold back.

Katie has since revealed, “it’s funny because like in the first week it did really affect me and it was silly because whenever I would wake up on Sunday at home it was like your 35-years-old and it’s an entertainment show, calm down.”

Katie and Gorka received their lowest score when they returned the following week with a Paso Doble. The choreography was intended to reflect the motto of the song to which they danced; ‘confident’ by Demi Lovato. However, Katie was visibly close to tears upon hearing the judges comments. While Darcy attempted to focus on the positive attitude with which Katie possessed, the others described her as “Stompy”, “plank-ish” and in need of improvement.

Nevertheless, the couple were supported by the viewing public and voted through to week three, and thankfully so, since their Foxtrot earned them 22 points – their highest score.

Katie says, “by week four I was in the groove, laughing and enjoying it and it was okay. You go in the green room afterwards and the [judges] are just normal, nice people.”

Sadly a Jive was to be Katie’s last dance on Strictly. Though disappointed to leave the competition relatively early, Piper admits though she overcame her nerves, insecurities and improved whilst on the show, she is not a natural dancer, and wouldn’t have wanted to be patronised or pitied.


Lauren Steadman – Paralympian

26 year-old Paralympian Lauren Steadman, originally from Peterborough, was born without a lower right arm. However, this has never prevented the determined sporting star from pursuing her dreams.

This Elite Para-triathlete is already a Double World Champion, Paralympic silver medallist (Rio 2016 – Women’s PT4) and six times European Champion.

Encouraged by her uncle who was himself a triathlete, she began competing in her local swimming team from age 11, representing Team GB. Two years later, Steadman took part in her first international competition in Denmark, as well as the 2008 Beijing Paralympic Games. Intent on pushing the boundaries of possibility even further, she switched sports, from swimming to the triathlon, after the London Paralympic Games in 2012.

Alongside her demanding athletics career, Lauren has pursued academics and achieved a first-class Psychology degree in 2014, followed by a Master’s in Business and Management.
Lauren recalls, “In one year I had taken all three titles – British, European and World Champion – for the first time, and graduated from university with first class honours. It really couldn’t get much better than that!”.

Lauren & Strictly Come Dancing

Lauren signed up to appear on the latest series of Strictly Come Dancing as she wanted to set herself a new challenge, learn another skill and test her “own levels of uncomfortableness”. When asked what she was most excited about she replied, “pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me”.

With no experience whatsoever, Steadman claims her friends and family would describe her amateur dancing style as that of a baby elephant!

The glitz and glamour of Strictly is indeed a stark contrast to her sporting life. Not only that, dance itself is a very different discipline to what she is used to as an athlete. Dancing requires fluidity, expression, emotion and creativity, rather than the rigidity and stern focus necessary for triathlon events.

Despite all the odds, Lauren and partner AJ Pritchard stepped out with an impressive Waltz in the opening week of the show, scoring 25/40 from the four judges. The couple dropped 3 points with their second dance; a Charleston, and were awarded 20/40 for their slightly awkward Cha Cha Cha in week three. However, they returned on top form the following Saturday with an elegant Quickstep, earning them 25 points.

Their latest performance marks a first in Strictly history – a Contemporary dance, newly categorized as the ‘couple’s choice’. It was a highly personal interpretation with choreography designed to represent Lauren’s personal journey, her defiance and disability. The emotional dance was awarded with a standing ovation from the studio audience and 24 points from the judges.

Lauren has chosen not to wear a prosthesis during her time on Strictly. Preferring that her disability remain visible, she is keen to break down barriers, challenge convention and encourage other disabled people by demonstrating how dance can be adapted to suit different bodies and abilities.
For Lauren, the rollercoaster Strictly journey continues…


This article was uploaded by Disability Horizons on 26/10/2018

World Toilet Day

19th November 2018 ~ #WorldToiletDay

I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.

#FitToBurst

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.

Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!

The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!

I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.

#incLOOsion

The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.


The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.

Each registered Changes Places toilet includes:

1. – a height adjustable adult-sized changing bench

2. – a tracking hoist system, or mobile hoist where not possible

3. – adequate space for the disabled person and up to two carers

4. – a centrally placed toilet with room either side

5. – a screen or curtain for privacy

6. – wide tear off paper roll to cover the bench

7. – a large waste bin for disposable pads

8. – a non-slip floor


Join the #RevoLOOtion!

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

Life, Stress & Coping Strategies

While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.

I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.

I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.

For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?

My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.


Here are a few of my coping mechanisms:

1. Music therapy ~

Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).

(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)

There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!

Here is a recent guest blog post I wrote for Mitch Coles, listing some of my top tunes!

2. Time with loved ones ~

Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.

He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…

3. Alone time ~

Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.

4. Get out the house ~

Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.

5. Avoid social media ~

It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.

This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.

Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.


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Turning 30…

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

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

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

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

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


Muscular Dystrophy ~ A Life-limiting Condition

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

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

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

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

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

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


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Top 10 Wheelchair Accessible Hotels in Tenerife

Guest Post

I was recently contacted by Orange Badge, who supply mobility aids, such as wheelchairs and mobility scooters, to holiday-goers in Tenerife. With expert knowledge, they offer free accessibility advice and information to ensure a stress-free stay in Tenerife.

About Orange Badge:

Established for over 20 years, the name comes from the original Orange Badge disability parking scheme in the UK.

Since 2003, they are the largest, most respected and professional mobility supplier on the island. Orange Badge provide unique products and free advice.

The Orange Badge team, who between them speak 7 languages, have lived and worked in Tenerife for over 60 years. they offer a unique ability to help you find mobility equipment and the most suitable places to spend your holiday.


Top 10 Hotels

1. Sheraton La Caleta Resort & Spa

Sheraton La Caleta Resort & Spa is a luxurious hotel in the picturesque Costa Adeje, just 200m from the beach. The terracotta coloured hotel boasts 284 spacious rooms with private terraces, 4 restaurants, 2 bars, a spa, fitness centre, and 3 pools.

2. Iberostar Grand Hotel Salome

Iberostar Grand Hotel Salome is a luxurious 5-star hotel. With stylish and modern rooms that have been recently refurbished, the Iberostar is an adult-only hotel that offers exciting cuisine, beautiful sea views, an infinity pool and spa, and even butler service for total relaxation.

3. TUI Sensimar Arona Gran & Spa

TUI Sensimar Arona Gran & Spa is just 800m to the buzzing centre of Los Cristianos and 800m to beautiful sandy beaches. This is a luxurious hotel with stunning views of the sea and harbour, 2 relaxing pools, and lively entertainment.

4. Gran Tacande Wellness & Relax

Gran Tacande Wellness & Relax is an elegant 5* hotel on the seafront in Costa Adeje. Dedicated to making your holiday as relaxing as possible, the hotel has 4 pools, a spa, restaurants, bars, lush interiors, and beautiful grounds for relaxing in the Tenerife sunshine.

5. Adrian Hoteles Roca Nivaria

Adrian Hoteles Roca Nivaria is centred around a family atmosphere. With fantastic sea views, 2 infinity pools, 3 restaurants, a lift that takes you down to the beach, and shuttle services to Playa de Fanabe and Costa Adeje, book this hotel for a relaxing and fun family holiday.

6. Hotel Villa Cortes

Inspired by Mexican hacienda design, Hotel Villa Cortes is located on the beach in Playa de las America’s golden mile, close to many shops, bars, and restaurants. Boasting 6 restaurants, a spa, a freshwater pool with waterfall and a saltwater pool, the hotel promises a fantastic holiday.

7. H10 Conquistador

H10 Conquistador is a contemporary, modern, and stylish hotel in Playa de las Americas. It benefits from 4 restaurants, 3 tropical pools, family entertainment, and access to both a shingle and sandy beach.

8. Hotel Paradise Park

Located in Los Cristianos, Hotel Paradise Park has stunning panoramic views of the town and the coast. It offers rooftop and grotto pools, beautiful gardens, and a shuttle bus service to the beach.

9. Adrián Hoteles Jardines De Nivaria

Located in Costa Adeje, Adrián Hoteles Jardines De Nivaria is a beachfront hotel with art deco interior, tropical gardens, and 2 lagoon pools. It has direct access to Playa Fanabe beach and benefits from 3 gourmet restaurants, a spa, and evening entertainment.

10. Mar y Sol Hotel

Just 400m from the sea promenade in Southwest Tenerife, Mar y Sol Hotel promises a lively and relaxing holiday with spacious apartments, 2 pools, restaurants, bars, and a gym.