Disabled film-maker hopes to “rewrite boundaries” for severely disabled young people

A press release from the Muscular Dystrophy Campaign.

A disabled film-maker who travelled the length of the country to interview men living with the same muscle-wasting condition he was born with tells how he hopes the resulting documentary will “rewrite boundaries” for severely disabled young people.

Dr Jon Hastie (32) from Shoreham-by-Sea, West Sussex set out in 2011 to meet with productive, creative and fulfilled men living with Duchenne muscular dystrophy, including a poet, an author, a graphic designer, an artist, two campaigners and a concert organiser. He captured his experiences for his first documentary, A Life Worth Living, released on DVD this week.

Jon himself has been left with little mobility, using a ventilator at night and requiring around the clock care owing to Duchenne muscular dystrophy, which causes muscles throughout the body to weaken and waste over time. He resolved to undertake the project, which he describes as the most “intense challenge” of his life, to encourage the ambitions of children and teenagers with Duchenne and other severe disabilities.

The film sees Jon travel to locations including Manchester, Edinburgh and Abercynonto interview each man in person, discussing life-style, overcoming difficulties, aspirations and personal attitudes to disability. Amongst those Jon met were 43-year-old JohnLinde, who now lives in Holland and has made a career organising pop concerts, and 42-year-old Mark Chapman, a graphic designer from Edinburgh, whose severe disability has not prevented him from living independently. Jon tells how his meeting with Mark challenged his own views on what was achievable, and was responsible for him taking the decision to move out of his family home last year.

The film also includes, the hardest, most poignant encounter during the project, as Jon meets with the parents of a young boy recently diagnosed with Duchenne muscular dystrophy, who were struggling to come to terms with the future impact of the condition on their son’s life.

DVD copies of a Life Worth Living are now being stocked by muscular dystrophy charities, the Muscular Dystrophy Campaign and Action Duchenne, which contributed funding for the making of the film. All sales made through the Muscular Dystrophy Campaign will help fund its award-winning 450-strong Trailblazers young disabled campaigners group, of which Jon is a member. Trailblazers was set up to empower young disabled people to challenge social issues that affect them.

Of making the film, Jon said:

“This project has been all about demonstrating just what can be achieved by people living with Duchenne Muscular Dystrophy – and other severely disabling and life-limiting conditions. There are so many remarkable, spirited people out there who have so much to offer. Disability presents both physical and mental barriers. We need to be showing the younger generation what can be done with tenacity and encouraging them to aim high.

“At 32, making this film has forced me to rewrite my own boundaries, from fulfilling a dream of becoming a film-maker, to making such an intense journey, and ultimately, to having my own home for the first time. It has always been my hope that it will do the same for others, and assure them that theirs is a life worth living to the full.”

Tanvi Vyas, Campaigns Officer for the Muscular Dystrophy Campaign Trailblazers, said:

“The representation of disability in the media and in film so often focuses on the barriers it creates, with young disabled people constantly reminded of the challenges that stand in the way of our ambitions. A Life Worth Living offers something quite different. It is a snapshot of people who have excelled in doing the things that they love, crucially, caught by a film-maker who is going through this same process himself. We are proud that Jon has decided to use sales of this film to help Trailblazers, which also sets out to encourage young people to challenge themselves and to remind them what is possible with determination.”

“We sincerely hope that people will support this powerful film and help it reach the many young disabled people for who it is intended.”