‘Pity is just another form of abuse’ – a powerful and provocative statement. This is Michael J Fox, my childhood heartthrob, talking recently to The Guardian newspaper about some people’s reactions to his diagnosis of Parkinson’s at the age of 30.
He makes an interesting point though. I don’t want people to pity me either when they discover I have MS. Pity is disempowering and serves only to make the person feeling pity on my behalf more powerful and somehow superior to poor, suffering me. Just pat me on the head and ask my friend if I take sugar.
In fact, in common with many people who have experienced a life shattering event such as cancer, Michael J Fox believes that Parkinson’s has been ‘a gift, albeit one that keeps on taking’. MS seems to be unusual in that respect; I haven’t met many people with the condition who are willing to echo that sentiment, at least openly. Why not?
He also raises a subject I hadn’t previously given much thought to – ‘a lot of times, people who are in a health situation become the observed patient and other people project their own feelings on to them: ‘No, you’re too tired to go there,’ ‘No, you don’t want that.’ This very much adheres to an old-fashioned model of disability, where it was assumed that everyone else knew better than the person living with the condition themselves – perhaps a form of control disguised as benevolence.
He makes a further reflection which resonated deeply with me, ‘I talk about it (Parkinson’s) because it’s there, but it’s not my totality.’ I have had internal (and blog-based) debates about this – is MS taking up too much of my life? After much soul-searching, the answer I came to was a definite ‘No’. Sure, it’s there, but then so are many other facets of my life. My blog and campaigning are a slice of my life (and why deny MS? ) but I am a sum of all it’s parts.
I fell in love with Michael J Fox all over again when he says the best way to overturn pity is to find the humour in the otherwise doom-and-gloom situation. That’s exactly why my blog strapline is ‘….a funny old life with multiple sclerosis…’