A couple of weeks ago I saw the most remarkable film at an All Party Group for young disabled people in Portcullis House. It was called “A Life Worth Living” made by Dr.Jon Hastie, who has Duchenne muscular dystrophy and needs 24 hour care. He and his carer travelled the length and breadth of Britain last year , visiting other young men with the disease and having frank discussions with them about all aspects of their lives. Nothing was off limits – they talked about sex, relationships, independent living, the need for privacy, how they coped with life – and the prospect of early death. At one point in the film, the action was speeded up and showed Jon being turned through the night ,altogether about six times. It also showed how Jon’s carer got him up. Jon, who is 31, ended up in the Netherlands talking to two brothers with the disease – one who ran pop concerts. His brother was 48 – the oldest person many of us had ever heard of with Duchenne. The saddest part of the film was when Jon talked to the distraught father of a newly-diagnosed young boy of 3 or 4.
At present the film is being shown at international film festivals and maybe shown here later on, possibly on Channel Four.
The really encouraging news is that research is under way into Duchenne called exon skipping which is yielding promising results.
In the meantime, we must not go backwards as a country in enabling people like Jon Hastie to lead independent lives.