As a wheelchair-user with Duchenne Muscular Dystrophy (DMD), quality of life is an extremely important aspect of my daily life. DMD will always play a huge part in your physical life but it does not alter your mental, intellectual and social life. We all want to leave our mark on the world, to meaningfully contribute to society and show the doubt or fear inside us that it was mistaken. Human beings are all born to play a unique role and need to reach our full potential as well as assisting others to achieve the same. Regardless of having a disability, isn’t it simply human nature to want to leave a worthwhile legacy? Having a disability has always made me fight harder and take responsibility of my DMD.
My legacy began when I joined Muscular Dystrophy UK (MDUK) in 2009, it helped me to finally respect and accept every aspect of myself. Many disabled people are defined by their disability but we learn to be defined by our personality or future ambitions. The first step of acceptance is never easy. I did not realise how many barriers I created which restricted my life and I am glad to discover the doors to the positive possible futures that previously had terrified me. MDUK drastically improved my quality of life by creating a social life, friends with similar interests, building confidence, providing motivation and a worthy cause.
Employment was never on my radar, many wheelchair users feel that they would not be able to hold a job or be an appealing prospect to employers. It only dawned on me recently that a major part of my life was missing: Employment. It is the necessary next stage to gaining independence and reaching adulthood, which has eluded me for so long. I was approached by MDUK to do a 3-day work experience at their Central London offices in April. It was a confidence booster to think that I had the necessary skills to work with the MDUK team.
I chose to join the wonderful Trailblazers team, as they have been the driving force behind the hard-hitting MDUK reports on improving disability access and awareness. I wanted to see the process behind the scenes of their reports; the press and media aspect especially interested me, as my future goal is to become a journalist. I was looking for a friendly place like MDUK to hone my skills in a working environment with none of the stress. If I can work in a professional setting then I will have the motivation to pursue many future goals that I never realised I wanted or could achieve.
Isabel Baylis (Work Experience Development Officer) was brilliant at easing me into the office environment. She was interested in what I wanted to gain from this experience and introduced me to the relevant contacts such as Matt Hepburn the Senior Press Officer who was extremely helpful. It was good preparation to acquire these networking skills in a professional setting, as they are vital for my future as a journalist and necessary CV evidence.
Over the 3 days, I felt myself grow, gain new skills and discover hidden talents that I never knew I had. Lauren West provided a list of jobs to carry out, such as researching upcoming TV shows featuring disability, creating questions for a travel survey and to book hotels or conference centres available for various Muscle Group meetings in Darlington, York and Liverpool. Usually phone calls are stressful tasks for me due to breathing difficulties but surprisingly I did not have any signs of shortness of breath. I also had to ring my good friend Sulaiman Khan to fill out a survey on disability representation in the media. This was a difficult task for me to carry out as it involved typing answers down quickly so I delegated the task to my PA Rachael. It was good practice to find a solution to complete any task necessary.
After work on Monday I went for drinks at the Silver Cross pub with my good friends Sulaiman Khan (Kinectricity) and Peter Duffy (co-founder of the fantastic Muscle Owl). It was enjoyable and as always we made a hilarious podcast on some a serious topic like mortality. They both guided me in using social media platforms to create a better more efficient online presence that reaches its fullest potential.
Day 2 felt like my normal routine as I felt completely comfortable like I had worked there for years, Tanvi Vyas and Victoria Wright required images to include in their new public transport report so we filmed outside Southwark tube station, a bus stop and kindly enough a bus driver lowered the ramp on to bus just for our picture. London has a much better bus service for wheelchair-users compared to Leicester but improvements are still necessary. Just for the experience I decided to use the Jubilee Line on the London Underground, which was disability accessible however I was unable to get inside the train due to a step and a gap. I did not want to get my small back wheels stuck between the carriage and the platform so unfortunately I decided not to get on. It demonstrates how disability access does vary from person to person or wheelchair to wheelchair.
The smallest details are sometimes your biggest personal achievements like having a work email, being able to log on to the MDUK system and go out for lunch. During my lunch break I had a short stroll around and found some quirky little restaurants.
I stayed in the Travelodge hotel within walking distance of the MDUK office for the 2 nights, MDUK do kindly reimburse hotel and travel expenses, which is a helpful bonus. I stay at this Travelodge regularly, the room was disabled friendly but a £90 mobile hoist rental was necessary, it would be a better idea for all hotels to have at least one room with a ceiling track hoist.
If anybody has the opportunity to do work experience at MDUK, they should definitely do it, as you will be looked after well by all the team and gain important skills and interesting experiences necessary to enhance your CV.
This sort of expansive experience provides the motivation necessary to change your mindset, wheelchair users do have to try harder mentally and physically in everyday life but through determined effort all human beings can reach our full potential.
ONWARDS & UPWARDS!