Disability Talk | My Blog Posts

I was recently contacted by Disability Talk who asked if I would be interested in contributing as a guest blogger.

Disability Talk is a website for disabled people to share thoughts, ideas and personal experiences.

There are many great guest commentators who discuss a wide range of topics – go and check them out!


Here are my articles – please take a look and let me know what you think!

My first blog post for Disability Talk

Scoliosis | Why I turned down a spinal fusion

Recruiting Personal Carers | Part 1

Recruiting Personal Carers | Part 2

My first Ceiling Hoist | A Long & Frustrating Process


If you enjoy reading my blog posts, please share and leave a comment. Thank you!

Emergency Care: My Experience

Muscular Dystrophy UK | #AmbulanceAction campaign

Throughout my 28 years, I have on many occasions had to call on the Emergency Care services.

I live with the progressive condition, Ullrich congenital muscular dystrophy. Consequently, I have contractures of the joints, a severe ‘S’ shaped scoliosis, and respiratory decline. I lost the ability to weight-bear at the age of 10, and now use an electric wheelchair to get around. I live with my parents and employ a part-time carer as I require support with daily activities including personal care.

My primary medical concern is respiratory related. Ambulances, A&E and hospital wards are all too familiar to me, having endured several bouts of acute pneumonia, a collapsed lung and pleurisy.

Although general knowledge of my disability is limited within all areas of Emergency Care, on the whole my treatment has always been thorough and adequate, if a little clueless at times!

I have found that whenever muscular dystrophy is mentioned, medics immediately assume it is the Duchenne form. This can be incredibly frustrating as it clearly indicates a lack of education and awareness.

There are many different variations of MD, the effects of which are wide ranging. I do feel that comprehension of these various forms needs to be increased throughout the Emergency Care services.

Each time I have called for an ambulance or been admitted to hospital, I need to relay every detail of my disability and how it affects me. This becomes unnecessarily repetitive and extremely tiresome.

Worryingly, there does seem to be a large gap in the most basic knowledge of muscular dystrophy.

I cannot complain about the care and conscientiousness shown towards me by paramedics, nurses and doctors. However, I am concerned about being in a position where I’m unable to answer their questions regarding my condition.

For instance, it can be dangerous to give those with Ullrich congenital muscular dystrophy supplementary oxygen as we retain carbon dioxide. It is therefore preferable to support breathing with non-invasive ventilation such as a Bi-pap machine. Failure to communicate this vital information can be literally life threatening.

Furthermore, the fact that I require the presence of a carer whilst an inpatient can be problematic. This again, has to be explained again and again, thus demonstrating a complete lack of awareness.


Find out more and join the #AmbulanceAction campaign.

Please share ~ Thank you!

ZENKA | Book Review

Synopsis:

Ruthless, stubborn and loyal.

Zenka is a Hungarian pole-dancer with a dark past.

When cranky London mob boss, Jack Murray, saves her life she vows to become his guardian angel – whether he likes it or not. Happily, she now has easy access to pistols, knuckle-dusters, and shotguns.

Jack learns he has a son, Nicholas, a community nurse with a heart of gold. Problem is, Nicholas is a wimp.

Zenka takes charge. Using her feminine wiles and gangland contacts, she aims to turn Nicholas into a son any self-respecting crime boss would be proud of. And she succeeds!

Nicholas transforms from pussycat to mad dog, falls in love with Zenka, and finds out where the bodies are buried – because he buries them. He’s learning fast that sometimes you have to kill or be killed.

As his life becomes more terrifying, questions have to be asked:

How do you tell a crime boss you don’t want to be his son?

And is Zenka really who she says she is?


My Review:

I confess, I would not ordinarily be drawn to ZENKA based on the front cover. However, I am so thankful I was offered the opportunity to read this latest offering from the brilliant Alison Brodie.

There really is something for everyone in this fast-paced, action-packed novel. It is a rollercoaster of intrigue and excitement. One minute you will be laughing hysterically at the dark comedy, which suits my sense of humour completely. In the next moment the mystery and tension will have you gripped with suspense.

The eclectic characters are fully formed, endearing and creatively written. Zenka herself, with her amusingly unique dialect, is a force to be reckoned with. Hell, I’d love to spend a day with her – it would be an adventure to remember!

With twists and turns aplenty, an unpredictable plot and even an appropriate injection of romance, ZENKA is a must read.

It is unique, cleverly crafted and refreshing, with a thoroughly entertaining blend of elements. Personally I would love to see this cinematic story adapted for the big screen!


I’d like to thank the lovely Alison Brodie for providing me with a copy of ZENKA in exchange for an honest review.

ZENKA is available to buy NOW!


Connect with Alison Brodie:

Twitter
Facebook
Website


About the author:

Alison Brodie is a Scot, with French Huguenot ancestors on her mother’s side.

She is a writer and animal rights activist.

Her books have been published in hardback and paperback by Hodder & Stoughton (UK), Heyne (Germany) and Unieboek (Holland).

Alison is now a self-publisher. Here are some editorial reviews for her recent books:

BRAKE FAILURE: “Masterpiece of humor” – Midwest Book Review

THE DOUBLE: “Proof of her genius in writing fiction” – San Francisco Book Review.

Interview | Amin Lakhani: The Dating Coach on Wheels

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Amin Lakhani before his makeover

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

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

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

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

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

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

Amin Lakhani now!

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

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

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

I have two main points:

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

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

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

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

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

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

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

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

8. Can you please explain your working methods?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Please do connect with the Dating Coach on Wheels on social media:

Website

Youtube

Instagram

Twitter

Facebook


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

Please follow me on Twitter and Facebook

The Winter Edit: Part 2

5 Tips to Stay Well through Winter

The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread.

How can we best prepare ourselves for winter?

We are 80% more likely to catch a cold during winter.

Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.

Click here for Part 1 ~ Top Tips to Keep Warm through Winter!


1. Stock up on supplies:
Medication –


• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home, should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.

Contacts –

• It’s good practice to have a list of contacts, in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. If you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water, so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.

• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!

Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.

3. Cleanliness:

• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.

5. Avoid Germs:

• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. For me, a common cold can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
Wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.


I really hope this was helpful! Please SHARE this blog post so that others may benefit.

I’d love to hear from you – what do you do to stay well throughout winter?

Breathe | Film Review

Admittedly, I was unaware of the pioneering disability advocate Robin Cavendish prior to the release of Breathe, a much anticipated biopic starring Andrew Garfield. Thankfully, this important figure’s story is sympathetically portrayed with charm, decency and humour in Andy Serkis’s directorial debut. 


The film brings to attention the life and achievements of one of Britain’s longest-lived responauts – Robin Cavendish (Garfield) who, at the age of 28, became paralysed from the neck down after contracting polio. Unable to breathe for himself, he was kept alive for almost forty years by a mechanical respirator.

The real Robin Cavendish with son Jonathan

We are first introduced to the handsome, sporty and awfully posh tea-broker in late 1950s England, where he meets and falls in love with the equally posh Diana, affectingly played by Claire Foy. The blissfully happy couple marry and relocate to Nairobi where Diana announces she is pregnant. Life was good and seemingly limitless.

Struck down only a year into their marriage, Robin and Diana are told curtly by doctors that he will survive no more than a few months. Confined to his hospital bed, Robin wished for death, mouthing to his brothers-in-law the words ‘let me die’. Depressed and resentful, he spits in the face of a hospital chaplain who suggests his suffering is part of God’s plan.

A helplessly devoted Diana asks what she can do, to which her husband responds, “Get me out of here”. Choosing to courageously risk death rather than submit to merely exist, hidden away as a patient for the remainder of his days, Robin was the first to pave the way for all other incarcerated disabled individuals. He determinedly pursued life, freedom, social integration and acceptance.

Opposing contemporary medical convention, the Cavendishes defiantly leave the hospital constraints in a blaze of glory, ignoring a disgruntled doctor who calls after them, “You’ll be dead in two weeks!”

Upon their exit they pass by two women who comment that it’s “not right” and “cruel” even, for “them” to be out and seen in public. This brief dialogue epitomizes the narrow-minded medical and social prejudice towards the severely disabled population, at the time.

The remainder of the film chronicles Robin’s fight to challenge such perceptions, whilst also pushing the boundaries of possibility. Not only does he succeed in changing attitudes, he was instrumental in making revolutionary practical advancements, thus effectively changing the lives of thousands of disabled people worldwide.

With the assistance of Oxford professor and inventor Teddy Hall (Hugh Bonneville), Robin develops a wheelchair that incorporates a ventilator, allowing him the freedom to venture beyond four walls, which he does with gusto.

A particularly funny episode involves a family holiday to Spain, during which Robin’s electrical respirator blows up, leaving him, Diana, their son and Diana’s brother stranded on a dusty layby. Not so funny, you might think. But the interaction that follows adds much needed light-relief.

While wife and son keep a jovial Robin breathing with the aid of a bag respirator, Tom Hollander’s character goes in search of a phone to call Teddy Hall back in England. The group then set up camp and attract a local crowd who party with them until Teddy makes a comical arrival on the scene.

As in life, there are moments of heart-breaking despair adding shade to the sunny optimism and whimsical jollity throughout. In one such scene, Diana presents photos of their former life in Nairobi to young son Jonathan who asks, “Can we go to Africa, Daddy?”

Unable to explain his plight to the youngster, he stifles tears of anguish as a watery-eyed Diana can say only, “I’m so sorry”. “So am I”, Robin softly replies.

Some years later, Robin teams up with Doctor Clement Aitken and together they tour Europe, demonstrating the custom made wheelchair. Particularly shocking is their visit to a German hospital where disabled patients are maintained in what looks like a futuristic, white-washed morgue. If you didn’t know this is a true story, you wouldn’t believe it.

The film, which on the whole is a little too rose-tinted, benefits from stark, impactful reminders of the ways disabled people were viewed, treated and constricted. However, it lacks detail and grit, failing to depict the daily grind of real life, the mental strain and tensions within relationships.
While the central performances are commendable, they fail to achieve the same conviction and reaction as those of Eddie Redmayne and Felicity Jones in the comparable The Theory of Everything (2014).

Nevertheless, Breathe no doubt remains an inspiring tribute to the highly influential innovator Robin Cavendish and his triumph over adversity. His story has been realised with love, affection and sincerity, quite literally since the producer, Jonathan Cavendish, is his son.

*This article can also be found on the Muscular Dystrophy Trailblazers website.*


You might also be interested to read:

My Interview with disabled actor Daniel Baker, who has Duchenne Muscular Dystrophy

My Interview with Emmerdale Actor James Moore, who has cerebral palsy

Life Update: Part 2

Carers and my first ceiling track hoist


Hey everyone, hope you’re all well.

As promised, here are the developments following on from my previous life update

Care

Having re-advertised for a part-time carer to replace my current PCA, I interviewed seven applicants, plus one who’s interested in ad-hoc cover. All were enthusiastic, though as any employer will know, things often change in the days that follow.

There was only one no-show which actually isn’t bad at all compared to my previous attempts to recruit new carers.

One of the seven ladies later asked to be a backup as she decided she couldn’t do every weekday. From the six remaining, I invited three to shadow, knowing that at least one would change their mind. I was right; they did.

The first was a no-show (yes, another)! After I contacted her to ask if she was going to attend, she simply replied, “I forgot”. Needless to say she was scrubbed from the list.

Number two messaged me a few days before shadowing, to say she had reconsidered and felt there weren’t enough hours. This left me with one applicant.

Thankfully she did show up. Seemingly reliable and keen to take on the role, I offered her the job on a trial basis from Monday 30th October.

My current PCA is leaving in December to pursue a career as a paramedic. So, fingers crossed all goes well with the newbie…

Ceiling track hoist

To my surprise, I was contacted a couple of weeks ago by Prism Medical to arrange a date for installation. Finally, after waiting for so long and constantly pushing the matter, I would get the much needed ceiling hoist on Tuesday 24th October.

In preparation, my Dad had to remove the glass intersection above my bathroom door to allow through-access.

Before:

After:


When the day arrived, we cleared the room and waited for the workmen to arrive, as expected, at 9am. An hour later and still no sign. Becoming impatient, I called Prism Medical but was told they wouldn’t be coming due to a technical issue.

What?! What technical issue?

Prism Medical claim they left a voice message, on the previous Friday, explaining they couldn’t connect the single rail going from my bed to the bathroom door, with the H-frame in the bathroom. We received no voice message. They also claim to have contacted the Community OT’s. They too have had no calls or messages from Prism.

A rep from Prism previously visited my home to take measurements, draw up plans and provide quotes. They then corresponded with a Community OT (or so I’m told) and agreed to install the ceiling track hoist. Yet despite all this, they have suddenly decided they’re unable to carry out the work. Excuse my language, but what the actual fuck?!

As you might expect, the remainder of Tuesday was spent on the phone: trying to get hold of an occupational therapist, complaining to and about Prism Medical, and negotiating with County Council Equipment Services.

I’m hoping to get funding approval for TPG to do the work, as they too had sent out a rep to provide a quote.

Naturally the County Council opted for the cheaper quote from Prism. That’s worked out really well, hasn’t it!

Final Thoughts

Today is Thursday 26th October. There has been no notable progress since Tuesday. Essentially, I am back to square one – harassing the OT’s daily to ensure my case is not ignored. Unless you constantly pursue the issue yourself, frankly nothing happens.

I am so angry and disappointed with the whole cock-up, though sadly not overly surprised. In my experience, unless you’re prepared to self-fund, this is the service (or lack thereof) you can expect!

I will be putting in a formal complaint and am seriously considering writing to my local MP. If we allow companies and organisations to get away with such failures and blatant disregard, nothing will change.

So, once again the saga continues. I will keep you updated – *Keep an eye on Twitter and my Facebook page*


Thank you so much to each and every one of you who has offered advice and support!

Halloween… 🎃🕸🍁👻🔥

With less than a fortnight until All Hallows’ Eve, here I bring you a few book and movie suggestions to get you in the spirit (you see what I did there – spirit!? Oh, never mind…)

*To check out my top picks from last year, click here.*

Film recommendation: 

IT: Chapter One (2017) Dir. Andy Muschietti

IT: Chapter One is definitely my movie choice this Halloween. If you haven’t already seen it, why not check out a late night screening at your local cinema?

I went to see it with my two older brothers and I’ll be honest, I wasn’t expecting much from this remake based on the novel by Stephen King. But, in my opinion, it’s well made and the casting is spot on. There’s just the right mix of thrills, fright, gore and even humour.

I’m not a fan of horror films in general, simply because I’ve never found one that has scared me. I must say though, this one impressed me!


Family film: 

Hotel Transylvania (2012) Dir. Genndy Tartakovsky

This animated fantasy film, along with it’s sequel, will entertain younger kids and grown-ups alike. Fast-paced and fun-filled, there’s plenty to keep a younger audience engaged, while quirky gags and more mature references will amuse adults.

Hotel Transylvania is essentially about family and the universal theme of a parent reluctantly letting go of their grown child.

Count Dracula, voiced by Adam Sandler, is throwing a 118th birthday party at his hotel, for daughter Mavis. The hotel is a place where monsters can gather and feel safe from the threat of humans, whom they fear. But, trouble starts when 21 year-old Jonathan (Andy Samberg) loses his way and finds himself at what he thinks is an extravagant fancy-dress party. Jonathan, a human, soon locks eyes with vampire Mavis – the only child of Count Dracula – and the pair fall in love.

The story is predictable, but it’s aimed at children and so this is to be expected. However, if you’re looking for a film to occupy the whole family this Halloween, I would recommend this one!


Recommended reading:

Dracula by Bram Stoker

Following on from Hotel Transylvania, it seems appropriate that I select Dracula, written in 1897, as my top pick – though obviously this one is not for the kids!

A gothic horror, the novel is written in epistolary format (a series of documents) and tells the story of Dracula who travels from Transylvania to England in order to feast on fresh blood and spread the undead curse.

He boards a Russian ship, the Demeter, which reaches the northeast shores of Whitby, (where I recently visited).

While there, Dracula becomes obsessed with a young woman named Lucy and begins to stalk her. Lucy soon begins to waste away and is diagnosed with acute blood-loss, though Dr Abraham Van Helsing cannot understand how or why. Eventually Lucy dies, but not before Van Helsing identifies the puncture wounds on her neck. Failing to prevent her from converting into a vampire, he along with three other men, kills her by staking her heart and beheading her.

A team of vampire hunters, led by Van Helsing, then pursure Dracula himself, which leads them to London. In retaliation, Dracula places a curse on Mina, the wife of one of his pursuers.

Through hypnotising Mina, the group are able to track Dracula, who has returned to his castle in Transylvania…

The Signalman by Charles Dickens

If you’re looking for a quick read, this classic short story is the perfect choice. A haunting and spooky tale, it will stay with you long after reaching the shocking conclusion.

Written in 1866, it tells the tale of a railway signalman, troubled by phantom appearances and supernatural goings-on. Over two nights, the signalman meets with the narrator, whom he invites into his gloomy cabin to share his worries and premonitions.

At first reluctant to tell his story, the signalman soon confides that these ghostly visions precede tragic and fatal events on the line. The first being a collision of two trains in the dark tunnel involving many casualties. The second incident saw a young woman lose her life on a passing train.

Convinced these premonitions are all a figment of his imagination, the narrator urges the signalman to see a doctor. However, it may already be too late…


I hope you all enjoy Halloween, whatever you get up to!

If you enjoyed this post, please let me know in the comments below, and don’t forget to share ~ Thank you!

My Top 10 Disabled Celebs | The Girls

The Girls:

My latest article for Disability Horizons showcases my pick of the top 10 disabled FEMALE celebrities. Because, in the wise words of Beyonce, girls run the world!

*Last year, Disability Horizons compiled their top 10 disabled celeb’s, including both men and women. To avoid repetition, I have not included any of the women from that previous article.


There is a great deal of ongoing discussion and debate around the inclusion and representation of disabled people within the media. Put simply, there is not enough diversity. Still, in 2017, the vast majority of British ‘celebrities’ are able-bodied.

However, we are seeing the emergence of more and more disabled people on our television screens and in the public eye. But, how many can you name? When contemplating this very question, I realised that most of those who immediately came to mind were male – Stephen Hawking, Warwick Davies, Alex Brooker, Adam Hills, Ade Adepitan and Jonnie Peacock, to name a few.

So what about the ladies?…


Hannah Cockroft MBE

Hannah, who has cerebral palsy, suffered two cardiac arrests within 48 hours of birth, which affected two parts of her brain. She was left with balance, mobility and fine motor impairment.

But this has most certainly not held her back. She is a gold medal-winning Paralympic wheelchair racer and 10 times world champion. In 2012 she became the first Paralympian to break a world record in the London Olympic Stadium for the 100 metres T34.

In 2014 she won the Sport Relief edition of Strictly Come Dancing with professional dancer Pasha Kovalev. That same year she launched 17 Sports Management Limited, a company representing disabled athletes.

Hannah continued her reign of success at the 2016 Paralympics in Rio where she won three gold medals.

Katie Piper

The victim of a vicious acid attack in March 2008, Katie has endured more than 250 surgical procedures to date. She suffered full-thickness burns (where both layers of the skin are destroyed) and had to wear a face mask for 23 hours every day. She also swallowed some of the sulphuric acid, damaging her throat, and was blinded in her left eye.

In 2009, the former model shared her horrific ordeal in the Channel 4 documentary Katie: My Beautiful Face. She also established the Katie Piper Charitable Foundation, which supports those with severe burns and disfigurement injuries.

In addition, she is now a successful author, television presenter, magazine columnist and philanthropist. An inspiration to many, Katie married in 2015 and is currently expecting her second child.

Cerrie Burnell

Cerrie was born with no right forearm and is severely dyslexic. Since childhood, she has always refused to wear a prosthesis or hide her disability.

An all-round entertainer, Cerrie is an accomplished actress, singer, playwright, children’s author and TV presenter. Between 2002-2008, she appeared in Holby City, Eastenders, Grange Hill, The Bill and Comedy Lab. She then transitioned to presenting, working on The One Show, The Wright Stuff and CBeebies (Jan 2009 – April 2017).

But her first appearance on children’s television was met with controversy. Some claimed that the presence of someone with a physical disability like hers could scare young viewers. In response, Cerrie spoke candidly about her disability and how it’s important that children are exposed to differences, for which she was widely applauded.

She now regularly speaks out in favour of diversity and the inclusion of disabled people in the media. In fact, she recently took part in the Channel 4 documentary Diverse NationShe’s since reached an even wider audience by presenting all the swimming events for the Channel 4 and the 2012 Paralympics.

Named by The Observer as one of the top 10 children’s presenters of all time, Cerrie has also been declared, by The Guardian, as one of Britain’s 100 most inspirational women.

A supporter of many charities including body-confidence organisation Body Gossip, Cerrie now wants to focus on writing more children’s books and acting.

Francesca Martinez

Critically-acclaimed stand-up comedian Francesca Martinez first became prominent playing Rachel Burns in Grange Hill (1994-8). Since, she has starred in BBC shows Holby City, Doctors and Extras.

But it’s not her acting that she’s most well known for, it’s her comedy. With a self-deprecating sense of humour, Francesca, who has cerebral palsy, describes herself as “wobbly”. In 2000 she became the first female to win the prestigious Daily Telegraph Open Mic Award at the Edinburgh Festival. She was also named one of the 50 funniest acts in British comedy by The Observer.

Also a campaigner and activist, Francesca has organised many charity shows and is a patron of several charities, including Evenbreak, which helps pair disabled people with inclusive employers. She’s also an outspoken opponent of government welfare reform, in 2012 launching the campaign War on Welfare (WOW), which called for an end to disability benefit cuts. She later secured the first parliamentary debate for disabled people by disabled people.

In 2013 she won the Public Affairs Achiever of the Year Award and the following year was named one of Britain’s most influential women.

Her recent sell-out comedy tour was followed by a best-selling book, both titled WHAT THE **** IS NORMAL?! She is currently working on a feature documentary of the same name.

Cherylee Houston

Screen and theatre actress Cherylee was diagnosed with Ehlers-Danlos Syndrome type III (EDS) at the age 23. She has appeared in Doctors, The Bill, Holby City, Emmerdale and Little Britain.

Her most recent role is that of Izzy in Coronation Street, which she has played since 2010, and is the soap’s first disabled character to be played by a disabled actor.

Aside from acting, Cherylee established the Manchester-based youth project TripleC, which aims to make drama accessible to all. She has spoken out about a number of political issues too, including the Conservative cuts to disability benefits and the representation of disability in the media. She also continues to raise awareness of EDS.

Anne Hegerty

Better known as The Governess in the award-winning ITV quiz show The ChaseAnne has a form of autism. In 2005, after watching a documentary about Asperger’s Syndrome and identifying with the symptoms, Anne told her doctors she believes she has the disability. It took two years for her to be officially diagnosed, during which time she lost her job as a proof-reader, due to her inability to multi-task.

Unable to pay her bills, Anne was confronted by bailiffs on New Year’s Day in 2008. She later sought advice and assistance and is to this day in receipt of Disability Living Allowance. Around the same time, her social worker encouraged her to audition for The Chase and even paid her travel costs to get there.

She is now a highly successful television personality and professional quizzer, have participated in Mastermind, Fifteen to One and Brain of Britain. Anne also talks candidly about her life with Asperger’s Syndrome and how it affects her.

Jess Thom

Jess, a comedian and public speaker, was diagnosed with the neurological condition Tourette Syndrome in her early twenties, and also uses a wheelchair. She’s most widely recognised for her memorable appearance on Russell Howard’s Good News in October 2015. The interview garnered much attention and has subsequently been viewed more than 600,000 times on Youtube – you can check it out in our article on 10 awesome disability-related videos.

In 2010 she co-founded Touretteshero, a blog that documents what it’s like living with Tourettes, featuring articles and videos. Its first production, Backstage in Biscuit Land (2014), met with critical acclaim. It has since toured nationally and internationally.

She has appeared on various television and radio programs including The Late Late Show, This Morning and Fry’s Planet Word. In 2013 she also delivered a TED talk about the misconceptions of Tourette’s and the creative potential of tics. While admitting her Tourette’s presents challenges and has been met with discrimination, she prefers to “celebrate [its] creativity and humour.”

Jess is an outspoken advocate and campaigner for disabled people’s rights. Her work often draws attention to the environmental and social barriers that prevent inclusion. An opponent of the medical model of disability, Jess insists her Tourette’s is a source of creativity, her wheelchair allows her freedom, and she is disabled not by her body but by the inaccessible environment.

Libby Clegg

Libby is a Scottish Paralympic champion sprinter, having won gold and broken records. She has a deteriorating condition Stargardt’s macular dystrophy, leaving her with only slight peripheral vision in her left eye. She is registered blind and is an ambassador for the Royal Blind Charity.

She has represented Great Britain in the T12 100m and 200m races at the 2008 Summer Paralympics, and the T11 100m and 200m in 2016 at the Paralympic Games in Rio. She is also the 2012 IPC European Champion and 2013 IPC World Champion.

As if she isn’t busy enough, Libby is also a course tutor and ambassador for Ability Training (ability-training.com), offering accredited disability specific awareness courses for sports coaches and fitness professionals.

Along with her beloved guide dog Hattie, she is helping to educate dog owners on the importance of nutrition and health. Libby raises awareness of the essential part guide dogs play in the lives of those with visual impairment.

She was recently honoured in the 2017 New Year’s honours service when she was appointed MBE for her contribution to sport.

Sarah Gordy

Award winner Sarah, who has Down’s Syndrome, is best known for her role as Lady Pamela Holland in the 2010 BBC TV series Upstairs Downstairs. She has also appeared in Holby City, Call the Midwife and Doctors, as well as various short films, radio dramas, commercials and many theatre productions.

She most recently portrayed Orlando Quine in the BBC series Strike: The Silkworm, based on the books by J.K. Rowling.

She is an ambassador for Mencap and patron of Circus Starr, a performance group that does shows for disabled children. When not acting, she volunteers at her local British Heart Foundation charity shop.

Genevieve Barr

Star of the latest Maltesers advert, Genevieve was born deaf. Having never learned sign language, she lip reads, and is, in fact, a professional lip-reader for different organisations.

She had a major role in the 2010 BBC drama The Silence, and the previous year played a deaf nurse in the Channel 4 comedy, The Amazing Dermot. Following her Bafta and International Emmy Award nominations for The Silence, she went on to act in the BBC3 drama series The Fades, and Shameless on Channel 4.

A freelance disability consultant and public speaker, Genevieve works with the charities Hear the WorldAction on Hearing Loss and AFASIC – a charity for children with speech, language and communication difficulties. She also runs courses and workshops for disabled actors.


What do you think of my choices? Who would be in your top 10?

Please leave a comment and share this blog post if you enjoyed it.

Jonnie Peacock and Strictly Come Dancing

Here is my latest article for Disability Horizons!


A move forward for disability representation within the media!

As a die-hard Strictly Come Dancing fan, and being disabled myself, admittedly I was pretty excited to hear that Paralympian Jonnie Peacock MBE would be competing in the 15th series.

In a landmark move forward for disability representation in the media, the 24 year-old sprinter is the first physically disabled contestant to appear on the main, primetime show.

Jonnie has taken on the ‘glitterball’ challenge in the hope that it will break down peoples’ views and “change some of the stigmas” around disability.

He added, “some people have preconceived notions of what people can and cannot do based on looking at them, but I think sometimes it’s just a case of not judging a book by its cover.”

Jonnie’s right leg was amputated below the knee after contracting meningitis, aged five. Clearly though, this has not held him back. He competed at the London 2012 and Rio 2016 Paralympics, winning gold medals in both games, and breaking a record for the fastest 100m T44 time in the process.

Partnered with professional dancer and last year’s runner-up Oti Mabuse, he quipped that if voted through to week three, he will ‘glitter up’ his prosthetic leg.

Having made a smooth debut with a charming and technically adept waltz, Jonnie opted to dance with a brand new blade in week two. A decision that paid off!

An energetic jive to Chuck Berry’s Johnny B. Goode caught the attention of the judges and public alike. Earning 29 points put him fourth on Saturday night’s leader-board. His combined score placed him sixth overall. It’s only after celebrities have danced twice: one ballroom and one Latin routine, that they face the public vote.

Since the jive is such a fast-paced dance that requires a lot of bounce action, the blade was a wise move. Despite being highly praised by all four judges for his “outstanding kicks and flicks”, Jonnie later commented that it was “tough” dancing with a blade which is much longer than his usual prosthetic limb.

In fact, the only criticism he received was for his upper body, particularly the lack of focus and refinement in his arms. Both Jonnie and his partner Oti agreed, this is something he has found particularly challenging.

The improvement from the previous week was evident, with greater enthusiasm and commitment to the complex choreography, characterisation and story-telling.

Jonnie revealed his disappointment with the waltz which he felt could have gone better. In contrast, the action-packed jive suits his fun-loving personality much more. He gave it his all, shedding the nerves and demonstrating increased confidence and showmanship.

His memorable jive rivals those of former Strictly winners Ore Oduba, Jay McGuiness and Jill Halfpenny. What makes it all the more impressive is the fact that the jive is notoriously difficult to master, and this was only his second performance. Furthermore, unlike several fellow competitors, Jonnie has no dance experience whatsoever.

The couple’s latest dance, a Paso Doble to the Indiana Jones theme tune achieved a respectable 26 points, placing them eighth for movie week. The slight down-score can be attributed to Jonnie’s dislike of the Paso which demands a stern, serious expression. It also marked a return to his usual prosthesis.

The sportsman says of his choice of prosthetic, “when [the dance] is controlled, slow and not so much jumping around it will probably be my standard leg”. So, it seems the blade will make a reappearance for at least some future Latin routines.

Having captivated the nation with such an endearing and “inspiring” start, could Jonnie be headed for Strictly glory? He has the skill, stamina, drive and discipline, with the potential to go far in the competition. So, why not!

This however, is not the first time we’ve seen an amputee dance with a blade on Strictly. Lance Corporal Cassidy Little, a Royal Marine medic, performed a winning Paso Doble with pro-dancer Natalie Lowe on a one-off edition of The People’s Strictly for Comic Relief in March 2015.

Cassidy, a former comedian and avid tap-dancer, lost his right leg below the knee in 2011, when hit by an improvised explosive device (IED) while on tour in Afghanistan.

Following the loss of his lower leg, Cassidy who in fact studied ballet at University in Canada many years prior, thought his dancing days were over. But a perfect score of 40 for the dramatic and expertly executed Paso Doble proved that his disability need not impede on his natural ability for dance.

Producers invited the war veteran to return for a Christmas special that same year, since the impression he made on the viewing public was so evident. Partnered once again with Natalie Lowe, this time the couple danced an equally impressive, festive-themed jive and competed against able-bodied celebrities.

Earlier this year, Gold medal winning Paralympic sprinter Heinrich Popow dropped out of the German version of the show, Lets Dance, because of swelling to his stump – a concern for prosthesis wearers due to fit and friction. Heinrich, who incurred an injury in week two, pushed through to the semi-final. But, in the end he was unfortunately forced to concede defeat to prevent further damage.

British amputee and former model Heather Mills wowed audiences with her daring moves on the American version, Dancing with the Stars, in 2007. She approached the experience with determination and humour, joking candidly that her prosthetic limb could well fall off mid-dance! The undefeated disability advocate later appeared on the popular ITV show, Dancing on Ice.

Back here in the UK, a Sport Relief edition in 2014 featured four Paralympians: wheelchair racer Hannah Cockroft, blind footballer David Clarke, former World Champion javelin thrower Nathan Stephens and sitting volleyball player Maxine Wright. 10-time Paralympic Gold medalist Lee Pearson took the seat of regular judge Craig Revel Horwood to help select a winner.

Strictly Come Dancing, established in 2004, is now a mainstream television programme in British popular culture. Reaching viewing figures of over 11 million, it is a perfect platform for contestants to raise their profile.

The inclusion of Jonnie Peacock in this year’s lineup has already made a huge impact on the disabled community. It represents forward-thinking, equality and disability in the mainstream. Furthermore, we are encouraged and yes, inspired to focus on ability as opposed to disability and limitation.

Widespread visibility of disabled individuals, such as Jonnie, in the media, will naturally be met with curiosity and questions. But that’s okay, that is progress. Questions result in answers which in turn leads to familiarity, recognition and ‘normalisation’.


Have you been watching Jonnie perform each week on Strictly?

Are you pleased to see a Paralympian included on the show?

Leave a comment and let me know what you think.

If you liked this article, please share so that others can join the discussion.

Thanks!


Related Blog Posts:

Strictly Come Dancing 2018

Britain’s Got Talent | Disability Representation

My Top 10 Disabled Celebs | The Girls

Breathe (Andrew Garfield, Claire Foy) | Film Review