~ joint contractures, scoliosis, progressive weakness, inability to weight-bear and respiratory decline ~
Inevitably, there is an additional impact on my mental health.
For the most part, I am upbeat and stay as active as possible. But admittedly, recurrent chest infections often get the better of me. It can feel like you’re fighting a losing battle, and frankly, it is bloody hard to remain optimistic when life is completely put on hold for months at a time, during which I’m unable to leave the house.
The considerable down-time makes forward-planning almost impossible. Over the years, I’ve missed out on many events and cancelled numerous birthday celebrations due to ill health. It is difficult to commit to social arrangements and accept invitations for fear of letting people down, which then leads to guilt.
When ill, I may…
• Have to cancel plans
• Not respond to calls or messages right away
• Be unsociable
• Be impatient
• Not want to talk
• Be unable to focus or maintain attention
• Spend a considerable amount of time resting and/or sleeping
• Lack motivation
• Be unproductive
• Feel pessimistic, frustrated and emotionally exhausted
• Feel isolated yet unable to see anyone
When I’m ill, I am out of action for a month, sometimes longer. The days are long, tiring, monotonous and utterly unproductive. It is easy to succumb to despair, so for me it is essential to establish a focus and a purpose.
• Rearrange any cancelled plans
• Don’t shut people out
• Accept support from loved ones
• Pet therapy ~ a cuddle from your beloved pet can work wonders!
• If possible, go outside, look up at the sky
• Give yourself a daily reminder of at least 3 positive things in your life
• Say out loud, “I will get through this”, “I will get better”, “I won’t be defeated”
• Don’t overexert yourself. Allow yourself the time and space you need to rest and recover
Life is a gift, but it can also be a bit shit sometimes! Always remember, you are stronger than your struggles. 💪
I think most people living with a chronic illness, disability or mental health issue can relate to this quote, at least to some extent. I know I do.
I am limited by my physical disability (congenital muscular dystrophy), despite the claims by some that you can do anything if you just try hard enough. As a non-ambulatory wheelchair-user with a muscle-wasting condition, I’m afraid there are certain things I cannot do.
I am heavily reliant on others to carry out daily activities such as cooking, cleaning, locking doors, opening and closing windows and so on. I also need help with personal care tasks like getting in and out of bed, dressing and bathing. This can be undignified, thus affecting my confidence and making me feel incredibly self-conscious and utterly undesirable. After all, who wants their boyfriend to shower them?!
I HATE asking people to do things for me, as I then feel a burden, a nuisance, an annoyance. Having to ask people to simply open a bottle or a can at the grand old age of 30 is frankly embarrassing (for me).
Sometimes I refuse to speak up and request help. Call it pride or sheer stubbornness. But there are other times I have no choice. Like it or not, I have to ask, to instruct, to explain.
For the most part, I’ve managed to conceal the extent of my disability from those around me. Many people, friends included, think I am much more able and independent than I actually am. Again, put it down to pride. But there are some people I can’t hide this from. Family members, of course, but also anyone I am romantically involved with.
Due to the nature of my disability and all the added extras – care requirements, dependency, restrictions, the inability to be spontaneous – I always believed myself to be undeserving of love. I genuinely thought *think* of myself as an unnecessary burden. Why would anyone put up with me, my weak, crooked body and all of my baggage when they could choose to be with someone else?
As a result of this and a lifetime of rejection, I put up barriers and distanced myself from society; a form of self preservation. Being told repeatedly that I’m not good enough, I’m “no one’s type”, and “too much to take on” has made quite a negative impression on my self-esteem.
Now, I don’t want to ramble or get too personal. But I am slowly starting to trust and believe I am worthy of love and companionship.
They say there’s someone for everyone. The cynical part of me still questions this. But maybe, just maybe, there is.
It takes an extra special person to accept me and my care needs. To take on, without question, a pretty drastic lifestyle change. To see past the wheelchair, the crooked body, the medical equipment and the disability itself, and simply love me for me, unconditionally. To try to convince me every day that I’m not undesirable, unloveable or a burden. People like this are rare, but they are out there!
It’s fair to say that one of the biggest challenges of being born with a disability is that it can be difficult to be who you are without thinking of the physical condition that you’ve been born with. It’s not hard to understand why a disability can knock the confidence from you. Many individuals can find it difficult to adjust to life that requires a major change to their day to day routines and tasks. This can make it more difficult for an individual with a disability to feel confident in themselves. However, some useful insights may be useful in picking up your confidence and helping you for the future.
1. Don’t live up to the expectations others have of you
When people look at those with a disability or injury, they tend to have pretty low expectations of you because of how you look or the disadvantage that you may have. But their judgements are wrong about you. You may have a lot to juggle on your plate such as school or work and you’ll need to learn new skills that can help you to adapt with your disability. But in learning these it will definitely help you for the future. Essentially, don’t let your disability bring you down and don’t be afraid to try new things.
2. Don’t compare yourself to something else
Everybody has aspirations and you shouldn’t let any condition you have prevent you from reaching them. There’s nothing wrong with being ambitious but also be realistic about your future goals. You know what you’re capable of and you’re sure able to do it. Don’t let others influence this.
3. Doctors don’t necessarily know everything
Medical professionals do a fantastic job and their skills are to be admired in what they do, but there can be occasions where they don’t necessarily have all the answers that you’re looking for. You know yourself pretty well and there will be others around you who know you pretty well too. Don’t let the advice of doctors get you down and in some cases, consider doing what you think is right as it can normally be the right decision.
4. Be open to bringing in new people
Due to your circumstances, it’s likely that you’ll come across and be introduced to new people in wonderful ways. It may form some of your greatest friendships but at the same time, you may come across some people who will find it difficult to accept you. Don’t let this get you down and force yourself to get them to like you. Stick with the people who feel comfortable with you and you feel comfortable with.
5. Others may be afraid to be honest with you
People around you may have a feeling of sensitivity around you and the fear that they may hurt your feelings. A lot of positive comments is great to hear and can be great for your self-esteem, but at the same time it might not be a great help. You’d also want people around you who speak honestly with you and they’re more likely being that way to benefit you. The majority of the time, they’ll be the one that you want to go back to for further advice and perspective.
6. Don’t be too critical of yourself
Consider the situation that you’re in and how there are very few people who are in the same boat. The fact you’re continuing to enjoy life even though you have a disability already shows good character. Be confident in the fact that you’re knowledgeable on elements of life that others have no clue about. The qualities that you have as a person are the majority of what’s needed to get by in life.
7. Continue to exercise and keep hydrated
Do whatever it takes to remain active. Consider taking up sports that are adaptive to those with disabilities, and save yourself from being a couch potato. It can help to mentally improve your wellbeing.
Self-esteem and confidence is a large issue in today’s society, particularly when it comes to the impact it can have to your mental health too. When we think of other topics surrounding these issues, a big one being individuals resorting tocosmetic surgery to improve their appearance, a lot of these options are extremely unnecessary because regardless of the condition that you have or how you look, embracing who you are is always the best way to move forward and gain the confidence you deserve.
Research commissioned by the Department for Work and Pensions (DWP) found that from 2011 to 2014, the proportion of workers aged 50 and older rose from 21% to 24%. The same ONS survey estimated that, by 2030, the number of people in the UK aged 65 and older will have increased by 50%, while those aged 20 to 30 would see a 4% decline.
This figure may vary depending on a variety of circumstances including the location, industry, policies and more. One thing’s for sure though; these changes will have far-reaching consequences across society, including the workplace.
With this in mind, it’s even more important to acknowledge and invest in supporting the changing workforce. Organisations are now in competition for the best and most experienced staff.
In this article, we explore what this means for businesses. We identify areas where employers can further support their older workers and offer some tips for ensuring their wellbeing.
Older Workers and Wellbeing
Anyone that’s been in employment in the last five to ten years would no doubt have noticed the increased focus on employee wellbeing. It’s the trending buzzword relating to the health and safety of not only the physical but also the mental health of workers.
To keep your workforce happy (and by extension increase productivity), you should consider investing in both physical and mental support.
To achieve this for your older workers, you need to first consider what they need and want in the workplace. Research conducted by CIPD at the Centre for Ageing Better showed that just like younger workers, they’d also like a job that is meaningful, stimulating and sociable.
A study by Ageing Better shows employers report greater levels of loyalty, reliability and commitment from their older workers compared with younger colleagues. Their experience in life and in their sector places them in an ideal position to manage themselves and other members of staff.
According to a survey by CIPD, the number one benefit of age diversity in the workplace is knowledge-sharing. They found that 56% of HR decision-makers believe that older workers transfer vital knowledge and skills.
Having a diverse workforce, not only in age but also race, religion and (dis)ability can also help to solve complex work problems. By bringing a mix of ideas, skills, strengths, experiences and backgrounds, you’re ensuring that strengths and weaknesses are balanced.
Finally, because of the estimated increase of over 50 year-olds in the general population in the UK, age diversity in the workplace can help to match the profile of your customers which will, in turn, improve the product or services you offer.
4 Tips for Supporting Older Workers
• Be open to flexibility: This is important to workers of all ages. It helps them to create a balance between their work and social life. Specifically, for older workers, it also provides a transition period to retirement. Remember to inform your staff of their right to make flexible working requests.
• Mentoring: By allowing your older workers to mentor younger employers, they’re able to pass on their experience, work habits and attitudes towards work.
• Training: Some employers are concerned about this investment because they worry that they’re investing in someone who may soon retire. However, it’s worth noting, training these workers means as well as keeping their skills sharp, they’ll be more employable.
• Employee Assistance Programmes: As well as retirement benefits, you should also be supporting them while they’re still at your company. Offering employee assistance programmes gives workers access to support that’ll help them deal with personal problems that might impact their work performance or their health and wellbeing.
On top of all this, you should also be conducting regular one-to-one meetings to review their performance, offer feedback and keep on top of any issues.
My thanks to David Price from Health Assured for providing this guest post.
The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.
Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.
Spinal Muscular Atrophy
1. Kat, please tell us about your disability and how it affects you.
I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.
I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.
SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.
When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.
I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.
Life as a disabled Model
2. How did you become a model and what does this mean to you, as a young disabled woman?
I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.
When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.
One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.
I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!
Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.
I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.
I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.
I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.
Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.
Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.
It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.
3. Kat, could you please tell us about your Youtube channel?
I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.
I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.
I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.
I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.
I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.
Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.
I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!
4. You describe yourself as a disability activist. What are the issues that are most important to you?
I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?
I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!
I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!
I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with FixersUK, where I spoke to sponsors about my film and promoting disability awareness.
I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.
I’d like to thank Kat Pemberton for taking the time to answer my questions.
Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.
Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.
Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.
1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?
I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.
2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?
My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!
It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.
3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?
Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.
4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?
5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?
Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”
I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!
6. Has your attitude to disability, your own in particular, changed over time?
Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.
7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.
Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.
I would like to thank Shane for taking the time answer my questions.
While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.
I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.
I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.
For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?
My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.
Here are a few of my coping mechanisms:
1. Music therapy ~
Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).
(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)
There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!
Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.
He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…
3. Alone time ~
Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.
4. Get out the house ~
Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.
5. Avoid social media ~
It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.
This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.
Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.
Experiencing more joy might seem a long way off to you, or even impossible to achieve. However, you can improve your happiness simply by adapting your everyday activities, habits and way of thinking. It may sound harsh but it’s important you first choose to stop being a victim of circumstance and start being the hero of your own life!
This is your own unique journey, and you can still make it positive and fulfilling if you are determined enough. Below we have some ideas for finding joy in your everyday life, no matter what your disability, illness or condition. Take a look…
First thing’s first: you should not suppress or ignore your true feelings when you begin to feel them.
Inflicting self-judgement and criticism will only have a negative impact. However, this is not to say you should force yourself to feel positive all the time – this just isn’t realistic. We all get down and feel lost and hopeless from time-to-time. Allow yourself time to grieve for whatever or whoever you have lost throughout your life.
Healing Is Not Linear
Healing does not happen in a straight line – it isn’t linear or consistent. One day you may feel great, and the next day you might feel worse than ever.
Write Daily Gratitude Lists
It is hugely beneficial to keep a physical record of all that you are grateful for. Try to get into a regular habit of doing this everyday. It will keep your mind focused and positively proactive.
You might be grateful for your job, friends, family, your home, health and so on. These are just a few ideas to get you started. Try to be specific and review how many different things you can come up with each time you write your gratitude list.
Setting Daily Goals
When you get up each morning, try to set an intention for your day. How do you want to feel today? Is there a specific task or chore you’d like to accomplish? Setting daily goals or intentions can help your day run smoother. As a result, you should find yourself making faster progress towards improving your mood and well-being.
Appreciate At Least Three People Every Day
Whether it’s your partner or a considerate stranger – nurture the important relationships in your life.
Are you appreciative of the people who perform your home care services?
Appreciate The Small Things
You don’t have to have lots of money, possessions and exciting things going on in your life to feel good about it. Appreciating the really small things is important too. Whether you’re reading a good book, chatting with a friend, enjoying a hot cup of coffee or simply watching your favourite TV show – find the enjoyment and fulfilment. The way you frame things in your mind has a lot to do with how happy you feel each day.
Learn To Love And Accept Yourself
Most people find this tough, let alone those with limitations who maybe struggle with things that others don’t. Learning to love and accept yourself will likely be one of the toughest things you set out to do, but it’ll be one of the most worthwhile and important. Don’t compare yourself to others, and find things that you really love and appreciate about yourself every day.
If you want to meet like minded people and share stories and advice, joining a support group could be a great idea. Check out support groups in your area and visit them to see how you feel.
Accept Help If You Need It
If you need help, please don’t be afraid to ask for it – it DOES NOT make you weak. Taking care of yourself and getting other people to help take care of you, whether mentally or physically, is nothing to be ashamed of – quite the opposite. It’s natural to want to maintain as much independence as possible. However, seeking appropriate help and support will allow you to do this for much longer.
Develop New Hobbies And Find Things That Make You Truly Happy
Developing new hobbies is a wonderful way to find happiness. Perhaps you could join a book club, learn to play an instrument, write poetry, paint, draw or do something else with your time – whatever you want to do, just give it a try!
Exercise In A Way That’s Possible For You
You may not be able to exercise much, if at all, but there are likely a few things you can do. Rolling your feet in a circle or moving your head from side to side, for example. Whatever physical activity that is within your limits, do it regularly.
Eating healthily will make you feel good from the inside out. Learn how to read and understand nutritional labels and aim to get plenty of vitamins and minerals into your diet.
Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience
Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.
Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’. Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit. Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies. She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.
Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…
Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”
“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”
“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”
“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”
“Will anyone actually love me if I have a disability?”
“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”
“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”
“I think, so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”
“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”
“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”
Chance of Rain
Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.
Muscular Dystrophy UK contacted Daniel after the production team specifically set out to cast someone with the disability. He appears in the psychological thriller, alongside Brendan Coyle, best known as John Bates from Downton Abbey.
The newcomer, from Cheltenham, is one of the few men with Duchenne muscular dystrophy to reach his forties. Here, he talks openly about life with a muscle-wasting condition, tells all about his debut acting experience, and shares his views on able-bodied actors portraying disabled characters.
1. Could you please tell us a little about yourself and your disability?
I am a 43 year-old man with Duchenne muscular dystrophy. I had a fairly normal childhood until the final years of primary school, when I could no longer walk and had to start using a wheelchair. I attended mainstream schools, followed by university. After university my condition worsened and I was given a ventilator to help me breathe. Due to this and some medication which caused negative side effects such as panic attacks, I ended up being bed-bound for nearly ten years. However, I eventually managed to control my anxiety. Then, after raising the funds for a new powered wheelchair, I faced the outside world again.
Duchenne is a condition where muscles get progressively weaker over time. We usually end up in a wheelchair by our early teens and require ventilation in our twenties. Although things have progressed medically, life expectancy is still in the 20’s. Some of us are living far longer than this, but sadly it’s still rare.
I try to live as normal a life as possible, and although there are always going to be limitations, I push myself and use technology to find ways around them. I manage to get out most days to either explore my hobby of photography or just walk my dogs. The dogs have their leads attached to my wheelchair so I can actually walk them myself. I still need someone with a pooper-scooper following me though as I can’t reach to do that job!
2. You achieved a BSc(Hons) in Applied Physics from Oxford Brookes University. How was your university experience in terms of inclusivity and disability awareness?
I attended university and got a government grant to pay for everything. I also received another grant called the Snowdon Award, which paid for travelling and a carer to help me. Nowadays things look much harder for anyone wanting to attend university and I doubt I would have been able to afford it myself.
I decided to commute each day as living on campus and finding accessible accommodation would have been very difficult for me. The journey varied between an hour and two hours each way, and though this was very tiring, it gave me chance to read text books and revise while in the car.
One consequence of not living closer was that I missed out on the social aspect of university life. I wasn’t overly bothered at the time as I’ve always liked my own company and was really there just to learn. But now when I look back, I think more socialising may have done me good.
The university itself was fairly accessible. There was one lift that was tiny and would break down on occasion, necessitating me being carried down stairs in my wheelchair- not a pleasant experience!
As I studied physics, I did need help performing the experiments, though luckily most lab work was done in groups so it wasn’t a big issue. The staff were always helpful and treated me like any other student. I can’t really complain about the inclusiveness and accessibility at all. Yes, some things could have been better, like having more accessible toilets. But overall it was a good experience and I’m grateful to have had that opportunity.
3. You recently featured in 2 episodes of Requiem (congratulations!) How was this experience and what challenges did you face as a disabled actor?
Appearing in Requiem was an amazing experience! I had never acted in any fashion before, other than primary school plays where I usually hid in the background. So the whole experience was something new to me and pushed my boundaries – something I try to do as much as possible these days.
I think the casting process was likely a lot easier due to my disability. They were looking for someone with my specific condition and there aren’t that many of us around. I sent a few headshots and pictures of myself, then chatted with the production team over email. I was offered the part within a couple of days.
As for difficulties, I think they probably aren’t the things people would expect or think about. As soon as the offer of a role came up, I had to check that my personal assistant would be available and flexible to take me. I had to think about transport and did some research to find which trains had the best accessible carriages without any changes. I even did a test run the week before filming just to make sure everything would go smoothly. I had long chats with the production team to ensure the correct equipment, like a portable hoist, would be available on the day. They were very thorough and wanted to make sure I was safe and comfortable. This is something most actors wouldn’t need to even think or worry about.
I was extremely lucky to be working with a great team on Requiem. They ensured I had my own room on set, organised taxis and sent a runner to meet me at the train station. They also had a medic check my needs on set in case of emergency, and made sure the set itself was accessible.
The day itself was perfect. Everyone (cast and crew) welcomed me into their family and I felt right at home. I didn’t feel nervous at all and the scenes were all shot in one take, which I think really impressed them. I felt just like any other actor – I was treated as one of the team and not “special”.
4. As a disabled actor yourself, how do you feel about able-bodied actors portraying disabled characters on stage and on screen?
I think it depends on context and certain circumstances. Sometimes it is probably necessary, especially when the condition being portrayed is progressive, and when a good actor who has done plenty of research plays the part it can work well.
In general though, I think disabled actors playing the parts of disabled characters is a lot more authentic and should be done as much as possible. We have skills and knowledge that could be invaluable to the production team.
There is also the aspect of showing disability to society so we are more accepted and understood. This can’t really be achieved unless the actor is disabled themselves. The more we (disabled people) are on screen and included in mainstream media the better.
5. What advice would you give to others like yourself, who are living with a muscle-wasting condition?
I would use the old cliché, ‘live every day to the fullest’, because you never know what is going to happen tomorrow. I take risks everyday. For example, if my ventilator stops working while out, I’m in big trouble!
But we need to just get on with life and not worry about every possible risk, otherwise we would be stuck inside doing nothing. This can and does lead to depression, which I have experienced myself.
Having said that, I do believe that people in a similar position as me should embrace and be proud of their internal strength and determination. Yes, we face an uncertain future, most without hope for a cure and declining health. But this gives us an advantage over able-bodied people – we are used to overcoming adversity and major obstacles in life.
Life with Duchenne muscular dystrophy isn’t easy! Maintaining happiness and finding enjoyment in things is an every day struggle. It can be incredibly frustrating too.
There are days I wish I could get myself up, washed and dressed. I would drive my van to the woods, venture to where it would be impossible for a wheelchair to go, and just be alone, listening to nature.
For people like me with a muscle-wasting condition, it isn’t a simple life. There are many things we won’t experience, so I would advise you make the most of what you can do and take advantage of every opportunity.
Some things I have done, like appearing on a primetime BBC drama, most ‘normal’ people will never get to experience.
Daniel features in episodes 4 and 6 of the BBC drama Requiem. The whole series can now be found on the BBC iPlayer.