‘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…’
good stuff – i wrote something about the different models of disability on my blog last year – might be interesting?
Brilliant blog post Steve – everyone should read it!!
that is a great post 🙂
Michael J Fox = yummy and funny! perfect guy xx
When I found out about his diagnosis I cried. I was sad that someone who had given me pleasure through his work had been diagnosed with a disease. I didn’t pity him and I fully understand why now through my own diagnosis. I don’t want pity because I feel it goes hand in hand with someone giving up on me.
Hope that makes sense!
Totally agree Samantha. It is about giving up and putting you in a passive, recipient role. And I really, really don’t like that!! I’m still me, I’m still capable of most things.
Michael J Fox (swoon)
I wouldn’t go as far to call MS a gift, but it has taught me a lot about myself and really opened my eyes on how badly the world as a whole is set up (or not :/) for disabled people
Very true. I think ‘gift’ is the wrong word perhaps – more of a chance to see the world through different eyes. Or to appreciate everything we have?
Well said! Yes, I think it is less a gift and more an awakening, even though the fatigue makes me want to sleep, lol. Like…right now.
p.s. Agree on the MJF comments: SO cute.
Awakening is a fabulous word!! Very Zen-like. I love that.
p.s. MJF is fab, but have now transferred my undying love to Cillian Murphy, who’s just appeared in a UK series, Peaky Blinders. Swoon.
The Walking Dead has just started; am back to being in love with…OMG…Andrew??…Gah! MS brain! Lincoln? What kind of a stalker am I if I can’t remember his name??
Yup, the divine Andrew Lincoln. Enjoy!!
a lot of people are so shocked when the hear his real accent :p
Andrew Lincoln? He’s got a lovely British accent, lol. But I do think he sounds rather sweet as an American 🙂
That dreamy English accent adds several Attractive Points. Not that he needed any!
Yup, he certainly wasn’t hit with the ugly stick, lol.
You share my feelings ,I hate pity …although sometimes I am my worst enemy …being stoic and proud at times does me no favours especially at work ,when I feel I cannot say no and feel I have to work harder to prove I’m as good as others
I’m really glad you brought that point up – I too am sometimes my worst enemy and I should really accept more help when offered!