CommonSpace columnist and disability rights activist Michael McEwan says a recent TV documentary offered a valuable insight into Motor Neurone Disease
AS WELL AS doing my work for CommonSpace and other media outlets in Scotland, I also advocate for people with a disability, to raise awareness, and I think a good platform for disability representation is television.
At the start of August a documentary was shown on on BBC Scotland called MND and 22 Year Old Me. MND stands for Motor Neurone Disease, which describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord which tell your muscles what to do.
In the case of MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste away.
The documentary followed 22-year-old Lucy, who lives in the north east of Scotland. Lucy was diagnosed when she was 19, becoming the youngest person in Scotland to have MND.
The documentary was filmed over a six-month period, showing Lucy’s love for life, but also confronting the increasing constraints of her illness. I think it was brave of Lucy to allow this rare, and often stark, account of her daily life, but she acknowledged that making the programme was a great experience because it encouraged her to try new things and perhaps revisit doing things she had stopped doing, like going out for nights out and to gigs.
On the show, Lucy shared with viewers her news that she had regained enough confidence to go on her first date in some years, and also enjoyed a long-awaited night out with her friends.
As part of her TV journey, Lucy travelled down to Newcastle to meet stand up comedian Lee Ridley who has been successful on the comedy circuit. Even though he uses an iPad to speak, his expressions on stage and his comically awkward poses express his hilarious personality.
She also met up with quadriplegic vlogger Jordan Bone, who uses her make up vlogs to show others that disability isn’t life-limiting.
Although Lucy is confident that she will not lose her voice, it is part of MND progression, so she decided to record her voice at the Ewan Macdonald Centre in Edinburgh so that even if she, like Ridley, had to communicate over time via electronic voice, she would sound like herself, including her infectious laugh.
Meeting Ridley and Bone was insightful for her, as they know how terrifying it is to lose your speech and almost full mobility.
Lucy has been working with MND Scotland to raise awareness and she has raised more than £120,000 to date. Through this journey of discovery she realised that although she may not get to house parties, festivals, or do all the things her peers can, she can still have good and fun nights out in different ways.
On the show she did a professional photo shoot in London, and met her favourite country singer Reba McEntire, got her new voice and continues to face her MND battle head on.
Picture courtesy of the BBC
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