Working full time is the goal for most of us – to earn our own money, pay the bills, put our skills and knowledge to good use, in addition to contributing to society. But for those who deal with chronic pain each and every day, this is not so easy to achieve.
Living with chronic pain can be debilitating, difficult to manage, incredibly stressful and for some it is sadly all-consuming. It is hard to focus on anything other than how you feel, thereby potentially affecting your personal and professional life, as well as your mental health and wellbeing.
No one wants to be out of work due to ill health. Aside from the obvious financial gain; work provides a purpose, opportunities to socialise, integrate with peers and further your own personal development.
Whether you commute or work from home, it’s important to find the method of pain management that suits you. Chronic pain can manifest in many ways, and as such there are several forms of treatment including medication, heat pads and even CBD oil.
Begin your day with strength and positivity: Try listening to motivational podcasts before bed or first thing in the morning. This will aid your mental health and encourage determination and perseverance to help you make it through the day.
Set the alarm: Seems obvious, right? But in all seriousness, this is an important step. An alarm will provide that extra nudge to get you out of bed. Position the alarm out of reach so that you’re unable to hit the snooze button or knock it over in frustration.
The earlier you start the day, the more time you have to prepare yourself physically and mentally. Rushing around will only add extra stress and inevitably exacerbate your chronic condition.
Learn to stretch: You might stretching is a bad idea for anyone living with chronic pain. However, in consultation with doctors and specialists, it can be of great benefit to devise a plan to stretch and exercise each day.
Stay as mobile and active as possible, but be sure to reserve energy and rest when necessary. Don’t force yourself to work through unbearable pain. This is counter-productive.
Comfort: Pay attention to your working environment – introduce furnishings and features for optimum comfort. Think about seating, cushions, footrests/stools and massagers.
Consider consulting an occupational therapist who will help to make your working life as easy as possible. If that means adding eight cushions of varying
firmness to your office chair, then do it!
Planning and preparation will result in good performance at work, despite constant chronic pain. Of course, it is sadly the case that many sufferers will never be completely rid of pain. But in order to work, and to work to the best of your ability, you need to formulate an individually tailored method of management. There is no ‘one fits all’ solution.
It’s fair to say that most of us dream of buying our own home, right? That first step on the property ladder is an exciting milestone in our lives. It is representative of independence, responsibility and yes, becoming a ‘real’ adult!
However, for many it can be a lengthy and stressful process. Finding a suitable property in the right location, and at an affordable price is not easy, particularly for today’s generation.
For those of us with a disability, the task is far greater. To some, being able to live independently in your own home, whether renting or buying, feels like an unreachable goal. If and when you’re able to find a property to suit your requirements, you then face the inevitable task of adapting it to ensure it’s fully accessible.
While this can be daunting and even off-putting, if you choose to take a positive perspective, it could be considered a fun, and thoroughly rewarding project. Remember, you don’t necessarily need to wait for an accessible property to become available. Alternatively, why not find the home you love and adapt it so that it’s perfect for you.
1. Taking Your Time
Perhaps most importantly, don’t rush the process (tempting though this may be). Of course, we’re all impatient to leave the family nest and move into our own place. This is major undertaking (particularly for disabled people) and a great expense, therefore it needs to be done right. It may take months, it may take years! Believe me, I know how disheartening the waiting game can be. But is really is essential to take your time.
2. Consulting A Contractor
Once you have found a suitable property, where applicable, the next step is to consult contractors (ie. builders). If structural work is necessary, seek advice and obtain quotes from at least three builders. I would also advise checking out a range of accessible homes. This will provide information and inspiration, thereby enabling you to plan your new home effectively.
3. Estimating The Budget
Obviously, there is no point obtaining quotes and making calculations if you are unaware of your overall personal budget. It is imperative, from the start, that you establish an estimated budget, and that you stick to it. You could fund the adaptations using savings, your original house buying budget, or you may choose to investigate the option of long term loans. Either way, ensure you have a genuine estimated budget.
4. Making It Your Own
When modifications are required to make a home accessible, it will affect the physicality and aesthetic of the property. For example; ramps, wider doors, level access, hand rails, lifts, lowered units and ceiling track hoists – these are all very visible features. You may feel like you are having to forego style and character in favour of practicality – and it’s okay to feel that way. But regardless of the extent of the adaptations, you can always make your mark. With a little planning and creativity, you really can make an accessible property your own. Have fun with furnishing and decorating your new home.
5. Making Room For Your Things
Whilst working with professionals (occupational therapists, builders etc) who will help to adapt the property to your specific needs, you’ll also want to make sure there is room for your personal items and equipment. Make a list of everything you will need to store – from wheelchairs to hoists.
At the end of the day, thorough planning is key! Prepare, plan and be patient…
While some progress is being made to accommodate disabled employees, there is still much more that could be done to help us to feel comfortable, confident and able to perform most effectively, at work.
This post highlights three crucial changes that need to take place to promote inclusivity within the workplace.
1. Better help for those with hidden disabilities:
It is evident that wheelchair-users, like myself, need physical modifications such as accessible desks, ramps at entrances and exits, and lifts. But, due to a lack of information and awareness, those with hidden disabilities are still being denied access to the minor adaptations required to enable their working day.
For example, some people with debilitating anxiety conditions can find it incredibly difficult to work in an open-plan environment. Providing a private space or even desk screening can resolve this issue, thereby enabling optimum productivity. However, some businesses would rather maintain their open plan aesthetic than implement these simple adaptations in order to assist disabled employees.
2. Inclusive bonding activity and rewards:
There is currently a lot of focus on workforce team bonding activities, since this has been found to be a successful method of encouraging inclusion. However, many of these activities are physically demanding ie. assault courses and river rafting – totally unsuitable for wheelchair-users and those with physical disabilities.
Of course, there are many more inclusive bonding activities, accessible to everyone regardless of ability. For instance, hosting a Weekly Quiz would unite team members whilst also providing a stimulating, competetive challenge. Then there are shared, adrenaline-fuelled experiences like skydiving, indoor skydiving and sailing. All of these sports cater for people with a diverse range of disabilities.
Believe it or not, bonding activities can be tailored to the needs of the individual, and made more inclusive through various adaptations.
So-called ‘escape rooms’ are increasing in popularity. Players are locked in and must work together as a team, solving puzzles and riddles in order to escape before their allotted time is up! These ‘escape rooms’ are fun, exciting and can be easily adapted for those with disabilities.
If you are feeling particularly creative, you can following the guidance here and devise your own unique, inclusive bonding experience. This way, you can ensure it will be perfect for all involved.
3. The opportunity to prove ourselves, just like everyone else:
Though it should really go without saying; as disabled people, we want the opportunity to prove ourselves, just like everyone else.
We don’t want token gestures from employers. Disabled people are skilled, talented, capable and willing to work hard. We can offer a unique perspective and want to prove our value as employees. We want to be there because we have a genuine contribution to make, and we want to be taken seriously in what we say and do professionally.
The important issue of workplace inclusion is something that requires immediate attention. Both employers and employees need clear access to information and education. Knowledge will promote confidence, which is essential for disabled people to access employment and for career progression.
Not all disabilities are visible. Right now, you could be sitting next to someone who is living with a form of significant impairment, and you would never know by appearances alone. Alternatively, you yourself may be one of many people with an invisible disability, trying to navigate the challenges of daily life.
Either way, it is both advisable and beneficial to gain an understanding of the coping mechanisms, and the ways in which people living with invisible disabilities overcome the obstacles of daily life.
It is often the case that those with a hidden disability, disease or disorder do not seek the help and support they so desperately need.
If, for example, no one sees your need to repeatedly check the front door before leaving (OCD), or that you have to sleep for an entire day after a brief shopping trip (Chronic fatigue), or that you need a glass of vodka before leaving home (Alcoholism); a genuine disability can be easily dismissed as nothing important/serious. Thus you endure, often alone, and continue with life and the issues associated with invisible disabilities/disorders.
Though your condition is not visible, it will inevitably impact and affect your quality of life and, to an extent, the lives of those around you. Sadly, it isn’t something that will just go away on its own accord either. Therefore, it is vital to seek help and advice. Whether that is finding somewhere like the Ana Treatment Centres, visiting the doctor to be screened for a particular condition, or even contacting a charity to assist with acquiring an official diagnosis.
Telling friends and family:
Informing friends and family of your hidden disability/disorder/illness can be another major challenge to overcome. You may worry that you won’t be believed, or that your nearest and dearest think you are just being lazy or making it up. Furthermore, you may not wish to bother or burden them. Perhaps you feel too embarrassed or self-conscious to share and openly discuss such a vulnerable part of your identity with others.
Of course, the decision to let people in your life know about your condition needs to come from you. It is important to remember that it’s completely fine if you don’t want certain people to know. You will find though, as a general rule, those who truly care will take the time to find out more about your disability/disorder/illness, and support you in any way they can.
Boundaries and limits:
When it comes to invisible disabilities, the expectations of the outside world, and even your demands on yourself, can often be in direct contrast to what you are able to do. This isn’t to say you should self-impose limitations and restrictions.
There are many, many disabled people out there pushing boundaries and living exciting, adventurous and fulfilling lives!
Unfortunately, it is not uncommon for people to react with confusion or frustration when your hidden condition dictates that you cancel/change your plans at the last minute. In this situation, it is advisable to draw on all your self-confidence and establish personal boundaries rather than adapting to the demands of other people. Finally, try to avoid conforming to pressure and societal expectations.
My good friend Lucy recently graduated from Canterbury Christ Church University with a First class honours degree. Like me, 24 year-old Lucy who lives with her family in Kent, has a progressive form of muscular dystrophy.
Now that she’s free from study, I thought I’d grab her for a chat and ask a few questions about her university experience from the perspective of being a physically disabled student.
Perhaps the insight, information and advice offered here might be helpful to anyone out there with a disability who is applying to university or considering higher education.
1. Hi Lucy, can you please describe your disability and how it affects you.
Hey! Right, so…I have Congenital Muscular Dystrophy – Merosin Deficient, meaning I lack the merosin needed to knit the layers of my muscles together. Because of this, I get progressively weaker over time due to my muscles being unable to properly repair themselves.
This weakness means I can’t really do anything for myself without support from other people. It also makes daily habits difficult as I lack the strength to hold things and do things. A few examples might be that I find it difficult to feed myself as I find certain cutlery too heavy to lift, I can no longer read books unless they’re digital as I cannot hold them or turn pages, and I need regular hoisting for transfers and the bathroom.
Being a muscle defect, my organs and my lungs in particular are affected, meaning I have regular medication and ventilator intervention to aid my breathing. Lying down helps with this, as well as only being able to write/type lying down, which means I lie down most of the time.
2. Did your disability put off going to university? And what, if any, concerns did you have prior to applying for university?
I knew it would be difficult to apply to university but I wouldn’t say my disability ever “put me off” of applying. I’ve been very lucky with my education in that my parents have always pushed for inclusion and for me to receive education befitting my abilities. I went to a mainstream primary school, a grammar school for my secondary education, and college after that. So applying for university, whilst scary, was the logical next step for me.
That’s not to say I didn’t have any concerns regarding how I would be able to access higher education with my disability. One of my main worries was that Uni is a very different environment from school in that the campus is a lot bigger! Having hoists and a portable bed so I can lie down is all well and good when it’s accessible but, what if I was timetabled for lectures in a different building to my equipment? It wouldn’t be possible to transfer every 5 minutes, so it took a while to negotiate a timetable solely in one place – it was tough but doable.
3. Could you please explain the application process and any challenges you faced?
After applying and being accepted, I began having regular meetings with the disability officer who would be supporting me during my time at Uni. The disability department at my university in particular was split into different fields: physical disabilities, learning disabilities, and mental health.
We discussed suitable timetabling, storage for my hoists and bed, even suitable places for my carers to chill out whilst I was in lectures. It was all sorted over the summer months before term was due to start.
I chose to live at home with my family throughout the duration of my course (2015-18) rather than on campus, so that was one less thing to organise.
4. What support did you receive and was it difficult to get this support in place?
I have my own team of personal carers, provided by an agency, who supported me whilst a student. In my case, this wasn’t something the university or disability officer organised or supported with.
The DSA I used mainly to pay for transport. I paid for a wheelchair-accessible taxi to take me to Uni or the library each day. The finance was also used to supply me with a MacBook and accompanying software such as Dragon Naturally Speaking and Claroread, as well as a printer and allowances for things like ink cartridges and paper.
I personally found the process of co-ordinating with my disability officer really straightforward at the beginning. She really listened to what my needs were and to the best of her abilities made sure everything was in place before I started my course. However, it was once I had enrolled that her involvement became less proactive. I think a major learning experience for me would be that I should have been more proactive myself in maintaining regular contact with her.
There are undoubtedly going to be a number of disabled students on the system at whichever university you attend. Therefore, I would say if you feel you need help or advice, don’t hesitate to ask! Because, when I did ask, she generally followed through. I only wish I’d asked for her help a lot more than I did.
5. How would you rate your university experience from a disability/inclusivity perspective?
Looking back on my experience as a disabled student, I’d rate my experience quite highly to be honest. There were certain things I found more difficult but generally I was included really well. I was able to lie down in lectures and participate fully, timetabling was set so I remained in one classroom for the entire day (something which my peers were VERY appreciative of, and made it known to me regularly). My equipment both on campus and at the library was easily accessible and staff were very helpful in its safe storage. All members of staff – from lecturers to security and housekeeping were continuously supportive and understanding of my needs.
6. In your opinion, what improvements need to be made to make higher education more accessible to disabled people?
As previously mentioned, I’ve been lucky in having the family support and confidence to access university, but I know how difficult it can be to have that confidence. I think one of the main reasons for this is because the process isn’t made clear or obvious. I mean, I had to work out my own process moving forward after my application. Whilst every process for establishing individual needs at Uni is going to be different, I think it’s important that the availability of such a step is highlighted.
I think UCAS and all university websites should, as a minimum, have a clear disability section outlining key contacts of enquiry. It’s far easier to make confident decisions if you’re fully informed and know that there’s going to be the support you need behind you.
I won’t rose tint – accessing higher education as a disabled student can be like having to find your own way in the dark! By no means is it a clear, easy-to-follow process.
7. What advice would you offer other disabled people considering university?
Having now completed university, I guess I’d advise others to try their best not to get anxious about the process. Yes, it’s daunting. Yes, it’s tough. But ultimately it is worth it.
As long as you’re clear and assertive about your needs, there will always be people around to support you. If you need support with campus or timetabling issues, ask the Uni. If you need help in class, ask your lecturers. If you need a pen, ask one of your peers! It all sounds really obvious and stupid but I can’t stress enough how important it is to just ask for help. But most importantly, be confident in yourself and just be yourself!
8. As a physically disabled individual, what do you consider to be the potential challenges around the social aspect of university life?
I think the social aspects of life in any context can be difficult for disabled people but at Uni it can be especially hard for some. I think one of the most important things to remember is that, actually, it’s not just you and it’s definitely not just disabled people that have this issue.
Many students relocate for university, sometimes half way across the country, sometimes half way across the world. So you’re all going to be in the same boat in that respect.
However, I’m not dismissing the fact that disabled people have it tougher than most. I think the most important thing is, once again, confidence. Many people lack the confidence to introduce themselves to disabled people for a multitude of different reasons – they don’t know what to say, they don’t know if you can respond, they don’t know if you want to be spoken to. All of these things can seriously put people off because they don’t want to embarrass themselves, or you for that matter, so it’s up to us to have the confidence that they lack.
Introduce yourself to people at Freshers’ Fayre, be an active member of your class and, if possible, join a society or two. Be the best version of yourself and people will be drawn to you.
*All images courtesy of Lucy Hudson.
I’d like to thank the lovely Lucy for putting up with my interrogation!
She is in fact a brilliant poet, having co-authored the poetry anthology ‘Wheels of Motion’ which can be purchased here!
Award-winning ITV Soap Emmerdale recently cast a disabled actor in a pivotal role, placing him at the forefront of a major, developing storyline. Newcomer, 25 year-old James Moore from Cheltenham, Gloucestershire has cerebral palsy. His debut as Ryan Stocks, the long-lost son of Charity Dingle, has been met with universal praise and applause.
The scene-stealer instantly endeared viewers with glimpses of a multi-dimensional character and an attitude to match his onscreen mother’s. Some even say there is a convincing physical resemblance between the two.
Engaging opening scenes indicate that Ryan is set to be a strong presence; witty, outspoken and unfiltered. Furthermore, his connection with the prominent Dingle family suggests that he is not destined to become a background, token disabled character. On the contrary, Ryan Stocks will be a regular and crucial feature in future episodes.
Like many avid Emmerdale viewers, I was anxious to see who would be revealed as Charity Dingle’s son. To see a disabled actor playing the role is unexpected but as a disabled person myself, I am more than pleasantly surprised.
The casting of disabled actor James Moore is an exciting, encouraging and essential step forward in the inclusion and representation of disability within the media.
1. Hi James, could you please tell Disability Horizons readers about yourself?
So firstly, I have cerebral palsy, but it’s Ataxic CP which basically means that I struggle with movement and coordination. I struggle to walk long distances and there are certain things I know I can’t do, but I’ve adapted to these challenges in my day to day life.
I got into acting because even from a young age, I’ve always been interested in film and the theatre. I struggled with this for a long time because I didn’t know whether I would be able to make a career and earn a living from acting, considering that when I was growing up, there wasn’t many disabled people being represented on film or television.
2. As an actor with a disability, how does this lack of representation make you feel?
I think, in terms of the here and now, societies attitude to non-disabled actors playing disabled characters is too lenient. I mean, we wouldn’t let the blackface caricature continue to happen – this is deemed unacceptable. So why let able-bodied people take the roles of disabled characters?
In order to ‘normalise’ disability on screen, we first have to find disabled actors and give them opportunities rather than taking roles and opportunities away from them. I think that is the biggest and most important step.
This is why I love being a part of Emmerdale – they are showing disability in a new light and letting viewers know that we (disabled people) can be independent and have full, healthy lives. Together we’re proving that disability isn’t a defining factor.
3. What, if any, challenges have you faced in your career due to your disability?
I have faced some challenges but it comes with the territory. At the end of the day, I would most likely have to play a disabled character and they are not easy to come by.
I guess my challenges a lot of the time stem from self doubt, as well as lack of opportunity. There aren’t really a lot of roles for disabled people and so it can sometimes be hard to foresee a lengthy career in the industry.
4. How did the role at Emmerdale come about? Was it always intended that a disabled actor would play the role?
After I got my agent the role came up almost straight away and I really put my all into it. It was always intended for a disabled actor, but not specifically my disability (cerebral palsy). It was incredible how they wrote that in later and they asked me in great depth about my disability and my experiences with it.
5. Your opening scenes with Emma Atkins, who plays Charity, were incredibly impactful. What feedback have you received so far?
The feedback I’ve had so far has been amazing – everyone is so nice! My Twitter is blowing up and all of the feedback I received has been overwhelmingly positive. In that sense I’ve been really lucky.
Some people who have seen me on TV have asked for my advice. To them and any other aspiring disabled actors out there, I would say don’t give up! Take every opportunity you can; do street plays, student films and whatever else it takes. Also take the time to find the right agent – one who you think will be an asset to your career.
6. What does the future hold for your character, Ryan Stocks?
I can’t go into great detail on the future of Ryan, but there’s great humour, unlikely friendships, and gripping drama yet to come. The script is fantastic and so well written and I’m so glad that I can provide an adequate voice for this brilliant character.
I received a NHS voucher from wheelchair services at a value of £1700. I’ll be honest, I was amazed to receive this much from them as I was expecting no more than a few hundred quid (if that), based on previous experiences.
£1700 is a lot of money for which I am grateful, but it’s only a fraction towards the cost of the Sunrise YOU-Q Luca wheelchair I now need. Even with basic seating, I have been quoted in excess of £7,000.
I applied to the Joseph Patrick Trust for a grant to help out – this could be (here’s hoping!) as much as £2,500. They are holding a review panel on 1st August and I will be notified of their decision within the next ten days.
So this is currently the stage I’m at in this looooong, slooooow process. There’s nothing more I can do until the JPT have held their review in August. The waiting continues…
You never know, I might get my new chair in time for Christmas! (Don’t mention Christmas. Yes, I know, I know – sorry folks).
On 30thMay, a determined group of individuals set off on a truly inspirational challenge to become the first amputees to conquer Mount Snowdon. The team, consisting of 18 amputees from around the UK, were led by Paul Clark, who lost his leg as a result of a bone infection following surgery in 2014. Accompanying him was Leigh Joy-Staines, Co-Founder of the voluntary charity STEEL BONES, which works to connect, support and inspire amputee families across the UK to overcome the trauma of amputation.
I was fortunate to interview both Paul and Leigh, prior to their challenge. Here is what they had to say…
1.Leigh, can you please tell Disability Horizons readers a little about yourself and your disability?
I was born with clubfoot (talipes) and had about 30 operations before the age of 5 to try to rectify them. The Doctors did the best they could at the time. I managed to get through school with just a few more operations, and lived a relatively ‘normal’ life. I was always in quite a lot of pain but this didn’t stop me, as I just loved playing sports and so I didn’t care about the pain.
I was bullied a lot but luckily had fantastic, grandparents, parents, cousins and friends who stuck by me and gave me the strength I needed inside to keep going. It impacted massively on my anxiety but I hung onto those people around me. Looking back, I was actually quite a popular kid. I just let the nasty name calling go over my head.
I left school early and started working immediately. I always worked hard and partied hard at weekends. But at the age of 23, after working a job with a long commute which involved a lot of walking, I couldn’t take the pain any longer. I then went to see my GP who referred me to an orthopaedic surgeon at Guys Hospital (London).
The surgeon seemed to think it would be a simple operation to put things right. Unfortunately, he hadn’t completed the proper pre-operative checks and didn’t have my notes in the operation. [As a result] he severed my last remaining artery and the nurses didn’t realise the foot’s blood supply was cut off until it was too late. All I remember is my girlfriend (now wife) turning up with my mates to take me home, and I was rushed into an ambulance.
The team at St Thomas’ Hospital were amazing. It became a second home for me since I was there for 5 months whilst they tried to save the leg, and then whilst I learnt to walk again. Since the amputation, I’ve had lots of problems with my stump (which I call JOYBOY) such as neuromas, spurs and infections. My other leg is also now disintegrating as it has taken a lot of pressure since the amputation. I’m now working with some excellent surgeons and physiotherapists to hopefully rebuild it, otherwise I will have to lose that leg too.
2. You are one of the founders of STEEL BONES. Why did you decide to establish the charity?
We had no proactive support at the time of amputation. My girlfriend (now wife) and I just tried to pretend everything was fine and ‘normal’. We didn’t take stock of what had actually happened. I’m still dealing with the trauma and am only just really accepting what happened – It was such a huge shock. When you still want to be the lad about town but your body fails, it breaks you. But, I’ve held on tightly to my family.
We phoned several amputee charities asking for support, but none came through. We felt so lonely and isolated, particularly once our children arrived. Our son Teddy was being asked lots of questions: ‘Why isn’t your daddy strong?’ and, ‘Why does he wear a boot?’
This really hit us hard as we didn’t know how to deal with the outside world, only our little unit. So, we decided to start meeting other amputee families.
It all started with a Facebook group and it’s gone from strength-to-strength.
We have met so many amazing people and it gives us great motivation to know that we are not alone. The charity focuses on the entire family, and not solely the amputee, because an amputation affects the entire family unit including friends too.
We provide support packs and create friendships with families to ensure they have the tools and advice they need to achieve their goals. We also run a weekly fitness club and an amputee football club with Cambridge United Trust and Cambridge FA. Furthermore, we are launching a series of children’s books based on amputee family stories. We also run a schools workshop programme with ‘If Not Me Inclusion Coaching’, which focuses on inclusive sports and raising awareness of amputees.
These projects are very close to our hearts as we know the impact they make. We hope to avoid what our son endured in his first couple years at school, and to ensure no amputee family feels isolated. We also have an events programme that all amputee families are welcome to join.
Our biggest event of the year takes place on 29th July 2018 in Cambridgeshire. To find out more join our Facebook group: STEEL BONES or sign up to our mailing list http://steelbone.co.uk
3. Can you tell us exactly what this particular challenge involves?
The challenge involves a group of amazing amputee families climbing
Mount Snowdon. We have been training for the past 6 months and have endured falls, knocks, sores, blisters, aches and pains. Despite this, the hugely inspirational group has kept on going. It is just so exciting to see them achieve this incredible goal.
STEEL BONES is entirely voluntary so the funds raised by this go directly to amputee families in the UK. It provides a lifeline by putting on more clubs, events and proactively supporting the amputee community.
4. Paul Clark, you’re heading the challenge to climb Mount Snowdon in May. How and why did you first become involved with STEEL BONES?
After my amputation on 30th May 2016, it was a very hard and lonely time for myself and my family. We didn’t know who to turn to for help and support and we felt very isolated. We didn’t know what support we could get or where to even start looking. We found there to be a big lack of understanding in the public and government as to what amputation means for an individual and their family.
We came across the STEEL BONES Facebook group and realised they were local, and had been in a very similar situation to us when Leigh lost his leg. They were offering free help and support to amputees and their families, so we contacted them for some advice.
Their support from day one was fantastic. Not only did they give us advice on who to contact regarding different matters, they also helped from with forms, letters and so on until we were sorted. Their support didn’t stop after this – they continue to support myself and my family with information and advice. They have also introduced us to many new friends in the same situation. It has become one big happy amputee family!
5. Where did the idea come from?
My wife and I have always wanted to climb Mount Snowdon, so we said let’s still do it and raise money for STEEL BONES to thank them. The money raised will allow them to continue supporting other amputees and their families throughout the UK.
6. What are you hoping to achieve as a result of the challenge you have set for yourselves?
Not only is this a personal goal of ours, and a massive challenge, we also hope to promote amputee awareness throughout the UK. We want people to be aware that just because I have lost a limb, it doesn’t make me any different, and I can still overcome challenges like anyone else.
I have managed to get a great team to join me on this amazing adventure, and it’s great that I have managed to pull together a group of amputees from around the UK. Not only will this bond us as a group, it will challenge us all and show that amputees can do anything, whilst also raising a fantastic amount of money for STEEL BONES.
Show your support for the team and make a donation by clicking here.
Improving Emergency Care for people with neuromuscular conditions
One of many campaigns fronted by Muscular Dystrophy UK is the #AmbulanceAction campaign. MDUK are working alongside health care professionals and people, like me, with neuromuscular conditions to improve emergency care in the West Midlands and Northern Ireland.
Since I am resident in the West Midlands, I was invited to be a part of this long-running campaign.
👆 See above to read my response to the latest developments in Oswestry.
To find out more about the MDUK #AmbulanceAction campaign, click here.
Are you a Britain’s Got Talent viewer? If like me, you have tuned in this year, you too may have noticed that the semi-final line-up features a number of diversely disabled acts – more so than previous years.
As a wheelchair-user myself, I am thrilled to see disability increasingly represented and celebrated on such a high-profile primetime TV talent show.
Lee Ridley AKA Lost Voice Guy
Lee Ridley, also known as Lost Voice Guy, is the first act through to the live final, having won the audience vote on Monday night. Hotly tipped to win the competition, Lee 37 from Newcastle, has Cerebral Palsy and is unable to speak. This uniquely speechless comedian uses a Lightwriter – a voice synthesiser, and as he says, “walks with a limp”. He is a BBC New Comedy Award Winner who wears slogan T-shirts depicting his self-deprecating and inclusive sense of humour – his audition shirt read, ‘I’m only in it for the parking’.
Lost Voice Guy wowed audiences and judges alike with his witty routines that draw attention to and highlight the humour in disability, thereby breaking down barriers and removing social stigma. The “struggling comedian who also struggles to stand up” joked that he “really is disabled. It’s not just really good acting”.
Fellow comedian Robert White who has dyslexia, autism and Asperger syndrome, also made it through to Sunday night’s final with his hilariously quirky musical comedy act. The 41 year-old music teacher from West Sussex describes himself as “the only gay, Aspergic, quarter-Welsh comic on the British comedy circuit”.
Though his audition proved impressive, White really upped his game for Wednesday’s live semi-final, in which he employed natural comedy timing to mock the four judges. Accompanied by a keyboard, Robert White flirted with his “next boyfriend” David Walliams and quipped that Amanda Holden dresses far too young for her age, while Alesha Dixon dresses like a hooker! This was met with unanimous rapturous applause and laughter.
Most notably, Robert directly referenced the sensitivity surrounding his condition during his live act: “I am aware that if you mention autism on stage sometimes audiences can go awkward and silent”. This effectively challenges viewers to consider how they receive and react to those of us with a disability, thus initiating the conversation.
This year’s youngest finalist is 10 year-old singer Calum Courtney who has a mild form of autism. Calum sailed through to the final after melting hearts with his reworked rendition of Stevie Wonder’s ‘Isn’t She Lovely’, in tribute to his Mum. He didn’t win the overall public vote, but having made it into the top three, was put through by the judges.
Calum was part of the line-up at the NSPCC Winter Charity Ball in aid of the National Autistic Society. His endearing and confident audition performance of Michael Jackson’s ‘Who’s Loving You’ caught the crowd’s attention and earned a standing ovation. It just goes to show that even at such a tender age, autism need not be a barrier to success.
Semi-finalists RISE, a group of young dancers from Manchester, presented two moving performances, though they did not make it through to the grand final. Group member 13 year-old Hollie Booth was caught up in the Manchester Arena bombing at an Ariana Grande concert in May 2017. Hollie’s aunt Kellie was one of 22 people who died as a result of the terror attack.
Hollie broke her knee, left foot and was left with nerve damage. She has so far had 11 operations and now has to wear an orthotic and use a wheelchair. She was keen to return to the group and continue dancing despite her trauma and the injuries she suffered. As a mark of solidarity and inclusivity in the face of adversity, all RISE dancers incorporate wheelchairs into their routines. The tearful judges hailed the girls as “inspirational”. In this case, I think the term is justified!
Final mention goes to B-Positive – the official NHS Blood and Transplant choir. The choir consists of 60 singers all of whom suffer from, or are directly affected by, sickle cell disease. Their aim is to raise awareness of the urgent need for blood donation. They sang the “powerful” anthemic hit ‘This is Me’ (a true statement of the importance of diversity). They are hoping for a wild card pass through to Sunday night’s final.
The inclusion of so many disabled acts in this year’s line-up will, I believe, have a positive impact on the disabled community. It suggests and promotes forward-thinking, equality and disability in the mainstream. Furthermore, it inspires open discussion of diversity in all its forms whilst also encouraging society to focus on ability as opposed to inability.
Widespread visibility of disabled talent within the media will naturally be met with questions and curiosity. But that’s okay because it signifies progressive inclusivity.
Many people are talking about the acts they have seen on Britain’s Got Talent. Audiences are realising that it’s acceptable to celebrate disability and to laugh about it! It is okay to ask questions since this educates and informs, thereby resulting in familiarity, recognition and ‘normalisation’.