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.
Isolation and loneliness are issues affecting many people living with chronic illness. You may live in central London, surrounding by people and yet still feel completely alone and separate from the outside world. Anxiety, depression and other mental health conditions, along with physical limitations can make it incredibly challenging to leave home. However, social interaction and the opportunity to form meaningful relationships is something we all need.
Read on to find out why and how to nurture more of this in your life, no matter what physical and mental health issues you are facing.
Even those of us who enjoy our own company and identify as introverts, experience a sense of loneliness from time to time. Ultimately, we all benefit from and appreciate the bonds of friendship, family and loved ones with whom we can connect, interact and share our lives.
Life with chronic illness can be isolating for a number of reasons. It is difficult, sometimes impossible to be spontaneous and free. As a consequence, one’s social life is often impacted. You end up missing out on events, occasions and turning down invitations even though you may not want to. Furthermore, it can be hard for other people, who have no knowledge or experience with chronic illness, to understand what you are going through and why you are unable to involve yourself as fully as you’d like to.
It is therefore useful to find a real-life group or an online forum that is focused on the specific condition(s) you live with. This will help provide support and information, enabling you to better manage your issues, whilst also connecting you with others in a similar position.
Of course, it’s not just companionship that makes social connection vital to those suffering from chronic conditions. Many of us need other people in our lives to support us directly with day-to-day activities.
This takes many different forms – from employed support workers to help with personal tasks like washing, dressing and feeding, to family members who voluntarily play their part. Others in your life may take on a less direct, but still supportive role in helping out with childcare, for example. They might even assist financially, by offering to be a guarantor should you need a loan. Find out who can be a guarantor by clicking on the link. This option is worthy of consideration, especially if you are unable to work full-time because of your condition.
Finally, personal relationships and social connections are so important because they give us perspective. After all, it is often all too easy to fall into a negative thinking pattern when you have a chronic illness. But interacting with as many people as possible, both in real life and via social media, will offer comfort, companionship and the realisation that we are not alone in feeling low, frustrated and isolated.
In addition, pursuing social connections in this way can present us with the rewarding and mutually beneficial opportunity to reach out to help other people. Something that can help tip the balance from feeling like we are a passive sufferer, to someone who is making a valuable contribution to society.
Saidee Wynn discusses life with chronic illness and her candid new book
32 year-old Saidee Wynn is the author of a new book about life with disabilities and chronic illness. A product of the successful blog, Spoonie Warrior, the book is a candid first-hand account that will make you laugh, cry and shout, “me too!”
1. Saidee, could you please tell us about yourself and your experience with POTS, EDS and PTSD?
I currently live in Atlanta, Georgia with my husband and six year-old daughter. Before POTS(Postural orthostatic tachycardia syndrome) hit me hard, I was a middle and high school teacher. I taught history, literature, and drama. I now work part-time as a copywriter and do my own writing whenever I actually have the energy to do so.
When I first got sick with POTS, I couldn’t keep up with my regular work load. My boss was very accommodating and worked with me. I started working part-time on what we hoped was just a temporary basis. That was in the middle of the school year. Towards the end of the school year, I knew that I’d have to make a decision about whether or not I could continue to run the classroom as a lead teacher.
I wasn’t getting any better and my doctors said they weren’t sure I would, so I made the decision to step down as a lead teacher. I continued to work part-time for a little while, doing about 3 hours a day, but after a year of attempting to do that, it was still too much.
Since my health is so unpredictable, it was difficult to stick to any kind of set schedule or keep up with deadlines. I ended up missing the last six weeks of my final year of teaching because of an injury. That was just over a year ago, and I still miss it.
I’ve had EDS (Ehlers-Danlos syndromes) my entire life, I just never knew it. EDS causes a lot of chronic pain as well as frequent dislocations and subluxations. There are a lot of things that I used to think were normal that I now know aren’t normal. Most things have to do with how the body moves. With EDS, our collagen is faulty, and collagen makes up the tissue that holds your joints in place. Actually, collagen makes up a good portion of your body.
Anyway, I always knew I was more flexible than other people, but I didn’t always realize to what extent. Those with EDS have a habit of sitting in weird positions, especially keeping our legs up on a chair or tucked in. I didn’t realize this wasn’t a normal thing that everyone did until people started pointing out to me how weird it was that I did that. I started paying attention to others and noticed no one else did it. I also didn’t realize intense joint pain wasn’t normal. I was always told it was “growing pain” and just assumed everyone else was better at dealing with it than I was.
I still discover strange things that aren’t really ‘normal’ all the time. My husband and I have a game of sorts where I’ll do something and ask, “EDS or normal?”. It usually means moving my body in some way that I didn’t know others couldn’t do. Also, being able to zip up my own dresses or put sunblock on my own back. I thought people were just being lazy when they asked others to do that stuff for them. I didn’t realize it was because most people legitimately can’t reach.
I’ve also had PTSD (Post-traumatic stress disorder) since childhood, but never recognized the symptoms or the depth of my trauma until a few years ago. It affects how I react to the outside world and other people. My brain can perceive danger even when there isn’t any danger around.
POTS didn’t really hit me until about 2.5 years ago, but it changed my life completely. I used to be an incredibly active overachiever, and now I celebrate having the energy to take a shower! POTS is a type of dysautonomia, which is a dysfunction of the autonomic nervous system. Think about everything your body does without you thinking about it, like breathing, digesting food and circulating blood. That should give you a rough idea of what parts of my system are affected – basically all of them.
Obviously, all of these conditions have a pretty big impact on my life. I can no longer hold down a full time job. I can’t dance, act, or sing like I spent my whole life doing. I’ve had to create a totally new ‘normal’, which isn’t easy to do and definitely involves a grieving process. But, somehow, I’m making it work.
2. You are also a wife and mother to a young daughter. How does your disability impact on family life and how have you all adapted?
The biggest impact is that I can’t do everything I would like to do with my husband and daughter. I can’t go play outside, have dance parties, ride bikes, or even play in the park. I have heat intolerance and live in the south, so I’m pretty much restricted to the indoors most of the year.
When my husband and I were first dating, we used to take a lot of road trips together, even going camping on the beach, but now I can’t handle long car trips. We mostly just spend time watching Netflix and Hulu.
Matt, my husband, picks up a lot of the slack as far as doing the things I physically can’t do. He does all the driving, shopping trips, and play time duty. While I can’t do all the physical things I wish I could, I can still be there for my family, emotionally. We read together, watch movies, laugh, and play (gently, of course).
My daughter still sometimes struggles with the fact that I can’t do everything she wants me to, and will sometimes lament by saying, “I wish you weren’t sick”. Despite this, we still have a very strong relationship. It’s pretty normal for kids to wish something about their parents was different, right?
3. How do you explain your condition and limitations to your young daughter?
There’s no one way. Every day she gets older, bigger, and smarter, which changes how we can talk about my illnesses. She knows I have “chronic illness” (yes, she actually uses those words), and that it means I’m always at least a little sick. But some days I feel better than others.
She also knows that I get dizzy when I walk or stand too long, and can’t be around lots of bright lights and loud sounds. When we were getting ready to go to her kindergarten graduation she said, “Mommy, it might be loud, so you should probably bring your earmuffs”. It was sweet.
There are two great books on Amazon, written by Moms with chronic illness, that we sometimes read. This helps her understand a little better. They are Mommy Can’t Dance and Why Does Mommy Hurt?
4. When and why did you decide to blog about your life and experiences with chronic illness?
I’ve used writing as a form of self-expression and therapy my whole life. When POTS came along and I suddenly couldn’t do any of my other passions anymore, I really leaned into my writing.
One day, I got the idea to start a blog and before I knew it I had bought a domain name. I thought I’d be lucky to even get one reader, so I’ve been overwhelmed by the response to my writing.
My goal has been to keep writing as long as I enjoy it, and I’m still loving it. Although, I have had to take breaks due to health issues or because of things going on in my life, I haven’t given up on it yet.
Most popular blog posts: “Why You Should Stop Spreading Inspiration Porn,” “Disabled: Say the Word,” and “Dear Doctors, No It’s Not All In My Head.”
5. In what ways have you benefitted from blogging and how does your blog, Spoonie Warrior, helps others?
I get so much from blogging. It gives me a great outlet for my experiences and a sense of purpose. I’m able to connect with other people and feel like I’m making a difference in some small way. The greatest feedback I get from my writing is, “oh wow, you too? I thought it was just me!”
I like to tell it how it is, and give a real look at life with chronic illnesses, rather than the polished, sugar-coated version we often see. People seem to need to see that. It helps them feel less alone in their struggles, which is a big deal because life with chronic illnesses can be so isolating.
I think it’s important to remind people that everyone is affected differently by chronic illnesses. Just because I was unable to continue teaching, it doesn’t mean someone else with POTS won’t be able to, so don’t be discouraged. And just because I’ve been able to blog and publish a book, it doesn’t mean others should feel ashamed for not doing the same.
We all have different levels of ability and this can change with every passing moment. So, try not to compare yourself to others or get bogged down with what we think we should be doing. I don’t ever want to be the example someone’s doctor/parent/teacher uses to say, “well, she could do it, so why can’t you? You’re just not trying”.
Do what you can, when you can. Don’t put your health at risk in order for others to feel more comfortable with your abilities.
6. Can you tell us about your first book – a collection of short essays – entitled, ‘Tales of a Spoonie Warrior: Chronicles of the Chronically Ill’.
I wrote the book because there isn’t a lot of literature about life with chronic illness/disability, actually written by someone with a chronic illness and/or disability.
There are a lot of self-help books and novels turning the lives of disabled people into inspiration porn or tragedies, but not much about the everyday realities of our lives. That’s a book I would have loved to read when I was first diagnosed! And, they say you should write a book you would want to read, so I did.
It’s mostly aimed at other people with chronic illnesses and disability, however, there’s also some stuff in there for healthy people who just want to know more about our lives and struggles.
The tone is very conversational. Some of it is funny and sarcastic, some of it is gut-wrenchingly sad, and there is also anger. All of it is very personal. It reads like you’re sitting down to coffee with an old friend. I think readers can expect to find themselves within the pages of my book and walk away from it knowing that they are not alone.
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).