There has to be more to Radical DisABILITY than just Hi-Tech and Bio-Tech


Even I, a dumb scientist, am beginning to realise what I suspect is blindingly obvious to those who have spent more time with ALS: If we’re going to take full advantage of 21st-century technology and medicine for everyone with ALS, if we’re going to take the terrifying horror out of the diagnosis so that people don’t spiral into denial or depression and often tacitly refuse the options to maximize their prognosis, in other words if we’re really going to make a difference, then we need to reconfigure some key parts of The System – at all levels, everywhere from lack of cross-fertilisation across the healthcare bureaucracy all the way up to counterproductive global attitudes concerning ALS.

If all the wonderfully-motivated people that are going out of their way to help me are to change anything more than just my life, then there are some unfair and unnecessary barriers that have been around so long they’re just taken for granted – like being declined for Travel Insurance – that now need to be swept away. There are some campaigns that people don’t even realise need to be run – like breaking free of the One Size Fits All dogma of many neurologists when it comes to Clinical Care – that crucially now have to be won. There are some minor skirmishes that people hardly even recognise as battles – like the automatic categorisation of ALS as a Terminal Disease rather than a (currently-untreatable) Chronic Disease – that now need to be escalated into war.

I have never campaigned for anything in my life. But, there’s a first time for everything…