How long have you used a wheelchair?
I have quadriplegic cerebral palsy and I’ve been using a wheelchair for 22 years.
What are your biggest challenges you must face as a wheelchair user?
My biggest challenge has to be relying on full time carers. I require support with all personal care, preparing meals, housework and traveling. The most frustrating thing is finding good, quality carers. I’ve tried hiring privately, using care agencies and care introduction services and a majority of them do not understand the complexity of my care needs. Since moving into my first home in 2017, I have had to heavily rely on family to support me because the carers I was receiving inadequate, unreliable and in some cases unsafe to work with. In addition, I feel irritated because I have full mental capacity to make decisions, communicate and have a career but without the physical support of carers, I’m would be unable to fulfill my dreams and ambitions.
I tackle this challenge with perseverance and patients. I’ve accepted I cannot work well with everyone but in time I will find a good care team.
How has being in a wheelchair changed the way you deal with your daily life?
Being a wheelchair user effects all aspects of daily life. Every trip or event has to be carefully planned out; Booking accessible tickets, finding accessible accommodation, checking the wheelchair access of a venue, organizing carers availability plus much more.
Luckily I know a tool that can help ease these difficulties. The AccessAble app provides thousands of access guides describing the availability of accessibility features in a public place. These can include level access entrances, automatic doors, ramps, lifts, accessible toilets and blue badge parking.
Did you pursue an education?
I graduated with an undergraduate degree in journalism in 2016 from the University for the Creative Arts in Farnham, Surrey. Despite completing my studies with a 2:1, I did not enjoy my university experience. In the classroom, the adaptations to complete my work took months to be put in place then halfway through my three year course, we had a new course leader who changed the syllabus, meaning I was unable to do all the modules due to accessibility issues. In terms of the student lifestyle, the university had limited accessible accommodation. Therefore I had to live at my former college 10 miles away in a one bedroom flat. Here I had to use a domiciliary care company who came in four times a day and I had to be in bed by 10pm so I had no chances to attend events at the student union or go on nights out. I had no friends, have no happy memories to share and I was lonely and isolated throughout.
What do you do for a job or career?
I currently work from home in a variety of freelance and voluntary roles:
I’ve been a writer for online magazine Disability Horizons since 2012. I have published over 20 articles for the magazine covering a range of topics including technology, travel, employment, entertainment and opinion pieces. I’ve also secured and conducted a variety of interviews with people including actress Sara Beer, playwright Kaite O’Reilly, BBC weather presenter Lucy Martin and Shadow Minister for Disability, Marsha De Cordova MP. In addition, I’ve gained paid freelance writing opportunities with partnership companies Lansyst, Lifton and Nimbus Disability. More recently, I’ve attended disability-related events as Disability Horizons’ reporter including Team BRIT’s disabled racing academy launch & Attitude Is Everything’s Outstanding Attitude Awards 2019.
I run my blog Rock For Disability, which I began in December 2017. I write two blog posts a week on lifestyle, disability, advice pieces, music news, reviews and interviews. I currently have over 1200 followers.
I’m the AccessAble Champion for Hampshire where I create blog and vlog entries promoting the use of the AccessAble app in Hampshire.
I’m a member of the Content Advisory group for the charity Muscular Dystrophy UK (MDUK). The group is a voluntary, representative body for the charity where we review, analyze and share feedback on the charity’s content projects.
I’m also actively seeking full time employment in the media industry. My ambition is to become a music journalist.
What are your hobbies?
I enjoy acting and have joined various theater companies over the past 15 years. I’m currently a member of an adult drama group at the West End Centre in Aldershot.
I’m also passionate about live music and love attending lots of concerts and festivals. Events I’ve been to include Reading Festival 3 times, Glastonbury Festival 2015, V Festival 2016 and Victorious Festival 2018.
What places have you traveled?
I’ve been abroad three times in my life; Portugal in 1997, Florida in 2004 and New York in 2012.
I have family in Scotland and Newcastle so as a child I traveled up there to visit.
Also when I was a child I had family holidays in Devon, Norfolk and Dorset where we stayed in accessible cottages.
Nowadays I mostly travel to towns and cities across south England attending concerts and festivals.
Have you had to deal with the any obstacles while traveling?
As an adult, traveling on an aircraft is now physically impossible. The last time I was on a plane was when I traveling to New York aged 18. I had to have several people carry me to my seat then throughout the seven hour flight I was constantly uncomfortable and having to rely on my parents to reposition me every 30 minutes. Furthermore, I had no access to the toilet and had to hold it in for the entire flight until I got access to a toilet at the airport. For now, I’m too anxious to board another plane until sufficient changes are made to disabled passengers needs.
Fortunately, I know someone who is campaigning to actively urge airlines to create a wheelchair space on commercial aircrafts. Christopher Wood is founder of the organization, Flying Disabled. He has a son and daughter who are both disabled and aims to encourage airline industry experts change the way wheelchair users access planes.
Another issue when traveling is the lack of accessibility in hotels. I need hoisting when carrying out my personal care but only a small proportion of hotels in the UK provide hoists in their accessible rooms. Therefore I have to bring my own portable hoist which I can only transport by my car and on some occasions the rooms are not big enough to maneuver the hoist. I believe there should be a legal requirement that all accessible hotel rooms provide a ceiling hoist. I stay in hotels 2-3 times a year for music events, visiting friends and family and attending work-related events.
Who helped you the most to become who you are today?
My former school and college played a big part in helping me become who I am today. From 2008 – 2013 I attended Treloar’s school & college for physically disabled children and young people in Alton, Hampshire. I made everlasting friendships and they encouraged me to be as independent as possible. I was inspired to attend live music events by two classmates and taught by staff how to organize trips and carers. This led me to pursue my ambition to become a music journalist. Before being a Treloar student, I always thought because of my disability, I would live with my parents forever and never be able to pursue a career, relationships or adventures. However I learnt that anything is possible and my disability can never stop me living my life to the fullest.
Were there any books, podcasts, events, or people that helped you along your journey?
As well as being a writer for Disability Horizons, I also enjoy reading articles from our other community of writers. I like finding about new assistive technology, accessible places and interviews with influential disabled people.
What else would you like us to know about you?
In addition to being a wheelchair user, I’m also registered blind. I was diagnosed with Acute Retinal Necrosis in 2005 following a virus in my retinas. I have no sight in my right eye and approximately 20% sight remaining in my left eye. This effects my daily living even more. I’m unable to drive a car and instead rely on carers to take me everywhere. At times I struggle to control my wheelchair in public places because it is too bright, dark, crowded or unfamiliar. Therefore I have to ask carers to take over controlling my wheelchair when we are out. I use several pieces of assistive technology to carry out my work and access TV, films, music, radio, books and games. One day I hope to get an assistance dog who can support me with both my physical and visual needs..
In all honesty, if I was offered a cure for my disability, I would take it but I’m also thankful for the friendships, connections and opportunities my disability has given me.
To find out more about me and my work, follow me on my blog, Facebook, Twitter, Pinterest, LinkedIn & Youtube.