In Memory of the Muscular Dystrophy Legends.

I was profoundly affected to hear that the founder of Muscular Dystrophy UK charity (MDUK) Lord John Walton had passed away aged 93. Not so long ago (August 2014) we also lost another dedicated member of the MDUK hierarchy Sir Richard Attenborough, our now Honorary Life President of Muscular Dystrophy UK. He tirelessly fundraised and brought many celebrity patrons such as Sue Barker. Both of their incredible, unyielding support for over 52 years was instrumental in getting us to where we are today.

Muscular Dystrophy UK is the charity for the 70,000 people living with 60 different types of progressive muscle-weakening and wasting conditions.

“Life’s most persistent and urgent question is, ‘What are you doing for others?” 

– Martin Luther King, Jr

Lord John Walton founded Muscular Dystrophy UK in 1959 to fought to find a cure for muscular dystrophy. Untiringly he was determined to improve society’s understanding and awareness of the disease, pioneered revolutionary clinical muscle research and brought the Walton Report to the House of Lords which was a detailed inquiry identifying the many failings in neuromuscular specialist care. Lord Walton was always involved in and supported proposals to improve healthcare for people with muscle-wasting conditions  by forming multidisciplinary teams. He was the driving force behind the creation of an All Party Parliamentary Group for Muscular Dystrophy which has made significant changes to Government policy over the decades.

“A life is not important except in the impact it has on other lives.”                                                               

– Jackie Robinson

I have only briefly met Lord John Walton at the launch of the Walton Report in 2009; he spoke a few words but had such a powerful presence with a brilliant sense of humour. His  determination and contribution for more than 5o years to Muscular Dystrophy UK is rather incredible, it displays the amount of love Lord Walton had for humanity. Without his efforts over the decades to improve awareness of Muscular Dystrophy and increase specialist care. I do not think I would be writing this blog or even be alive. The biggest impact MDUK has had on my life is staggering, it rediscovered the confidence that I had lost along with my ability to walk. It expanded my mind to accept my Duchenne Muscular Dystrophy, to voice the problems you face constructively and to enjoy life without disability stopping you. To the whole Muscular Dystrophy UK family Lord Walton’s legacy has given us all a better longer future.

“In the end, it’s not the years in your life that count. It’s the life in your years.”                                        

Abraham Lincoln

Thank you Lord Walton and Richard Attenborough for your wonderful service and your legacy will always live on in us.

RIP Lord John Walton (16 Sept 1922 – 21 April 2016)

 

 

 

 

 

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The Next Level: Working at MDUK

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!

Leicester Review: Taxi Service

I am proud to announce that on Monday, April 11th I begin 2-½ days work experience at the Muscular Dystrophy UK headquarters in London. I am honoured to join the wonderful Trailblazers team and learn the huge amount of effort that goes on behind the scenes of all they’re amazing reports.

I thought it would be a great idea to share my recent experiences using Leicester‘s public transport with you.

Initially I will only review the quality of the taxi service in Leicester; this information will benefit Trailblazers’ new public transport report as previously they only focused on reviewing and improving public transport methods in London.

In the past, I only used taxis when going to school after spinal surgery and had a pleasant experience. However, after I had a new wheelchair that had a taller backrest I could not fit into a regular black cab so I required a larger wheelchair adapted taxi with a tail-lift. I did feel safer in a wheelchair-adapted taxi due to the ability of being securely strapped in.

Previously I used the company Swift taxis but I have had problems with the attitudes of their taxi drivers to my disabled friend, the driver was annoyed at having to get out of the cab to operate the taxi ramps. It was quite a stressful situation and very unnecessary.

This time I used the company ABC Taxis to take a short 5-mile journey from my house in Oadby to the Highcross shopping centre in Leicester being dropped off at Charles Street. The receptionist was friendly when pre-booking the taxi; a standard black cab arrived at my door with a built in ramp that opened out and a friendly driver that treated me with respect. The only issue I found with the actual cab was not being strapped in securely however due to the limited space inside I did not move about as much. The ramp was adequate but the ramp surface was quite smooth and with wet tyres, there were some grip and traction issues.

The taxi journey took 19 minutes both ways and cost £13.50, I am told that compared to prices in London (via Uber) this taxi journey was expensive.

Next stop: Buses!

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