Sharing

Welcome to Blog 2.

(It’s been difficult to write this week so I’m astonished that you have something interesting to read)

This week I was asked by the Muscular Dystrophy UK (MDUK) media department to write something regarding my work as an Advocacy and Peer-support Ambassador. I’ve been an Ambassador for over a year now and have different cases to handle, such as newly diagnosed MD parents, school SENCO’s wanting to provide pupils with MD as smooth as possible school experience or Occupational Therapists enquiring about wheelchairs.

Before I write more about what I do I need to emphasize how important MDUK has been in my growth as a man over the 5years I’ve been part of them. I’ve become more confident and determined to assist anyone through the faith they have had in my abilities.

Being an advocacy ambassador has grown my skills & knowledge through the wonderful support of MDUK, they hold ambassador days where you up skill to better understand the legal side of advocacy or how to create a social media presence. The best part of these days is to see fellow ambassadors and friends.

One case that stuck with me was a SENCO contacting me about a newly diagnosed primary school pupil with Duchenne Muscular Dystrophy (DMD). She was keen to give the pupil the smoothest school experience so she asked about issues I faced at school. My experiences were slightly more difficult in primary school since I was misdiagnosed until age 9; these are a few issues I had:

  • Raising my hand up was tiring so I used to shout out and was told off.
  • At break times, I used to stay inside as I felt tired running around but the good thing at my secondary school I was allowed to have friends inside too.
  • I couldn’t carry a briefcase or lunch tray.
  • Swimming lessons were difficult, as I couldn’t get changed myself so my Mum came in to help but the school liked us to be independent.

I was amazed with how much sharing my life experiences had helped her and highlighted issues that she never imagined were problems. The macro issues such as accessibility of the building are easily fixed but people with the disease only know the more important micro level, which needs exposing. It was great to see how some schools are proactive in helping school life to go smoothly when life gets difficult and how times have changed for disability awareness. I really felt lucky to be able to help this pupil to enjoy school and not let DMD affect this part of his life.

I’ve realised how sharing life experiences is important, not just for the people you help but also for yourself. Opening up to someone who is experiencing similar issues i’ve faced in the past are cathartic but initially it was difficult looking back at my past life. There has always been a disconnected view between my walking life and wheelchair life, I saw myself as 2 different people. Helping this boy was like helping myself as a child so the process of thinking back on my life has allowed me to fully accept myself and own my life walking or otherwise.

Thank you.

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Identity

Vivek is the name, 25 is my age & Duchenne Muscular Dystrophy (DMD) & Haemophilia are the diseases I have. These defining factors could describe my identity but identity is transient and changes due to evolutionary life experiences.

My identity has grown over the years, this blog is only the beginning of my journey to explore it. I have found peace and contentment with my situation, the illnesses I live with have helped me to accept what I can do. I now do not feel disabled, I’ve found that if you change your mental world your physical world changes too.

I would like to think that my faith has helped me reach this stage. I am not a religious person in the traditional sense, but I’d say I’m a spiritual person. I believe that god is just the energy around us and everything has a reason.

My identity is tied in with Muscular Dystrophy UK as I am a Trailblazer fighting for disability rights and an Advocacy Ambassador who advises cases regarding MD.

My future posts will explore certain topics in more detail or to create awareness of DMD to show the day-to-day issues we face.

Thank you for following me on my journey!