Charity, celebrity and Parkinson’s

http://www.kickstarter.com/projects/1193179890/illuminate-parkinsons

Apparently, it’s a ‘travelling gallery show featuring photographs of parkinson’s sufferers and celebrity supporters for a cure.’

It’s very ‘American’, and, well …

What is it with this stuff? Check this out:

Hi, my name is Allan, and I’m a commercial photographer. Inspired by my best friend Becky, I’m creating a travelling gallery show and photo book documenting individuals with Parkinson’s. Becky has had Parkinson’s since she was 29, which surprised and appalled me enough to want to create this series of photos documenting young Parkinson’s sufferers. A few fancy faces I’d already counted among my clients were similarly inspired and decided to pitch in: thus far we have shot such luminaries as Terry Gilliam, Grant Morrison, Neil Gaiman and Kevin Smith, with more to come, all jumping in to help illuminate this condition through art. We are taking these photos on the road, promoting autumn shows in Los Angeles, Edinburgh and Berlin, and we need your help to make them a reality.

The words that get me are ‘create this series of photos documenting young Parkinson’s sufferers. A few fancy faces I’d already counted among my clients were similarly inspired and decided to pitch in: thus far we have shot such luminaries as …’ I see no PD sufferers. The video says that the presenters are actors, not Allan and Becky. I see nothing but PR.

I am increasingly uncomfortable with celebrity campaigns. I think that they reinforce the feeling that we can give some money and salve our consciences – and our consciences are soiled not with our guilt at not doing anything, but our guilt at being well when others are ill.

I am ill when others are well. I find it monumentally patronising, and yet, recently, was amazed that PD awareness week arrived and neither I nor anyone else seemed to notice.

Creating a gallery documenting the lives of sufferers of PD or any other condition is a legitimate and, I think, useful thing. It cannot but help to disseminate awareness of this and other conditions.

Showing lots of pictures showing celebrities holding candles to ‘Illuminate Parkinson’s’ illuminates nobody. It perpetuates the feeling that we need not bother actually thinking, actually trying to empathise.

I know that their hearts are in the right place. I merely question their choice of medium, and my question says more about public attitudes to anything remotely uncomfortable: if it’s embarrassing, then we must swaddle it in niceness.

Yes spread the word. Yes let’s have ore people realise that PD sufferers, like many others, are not always obvious. I do not have a tremor. But I have PD. Surprise followed by awkwardness is the usual response to the news. This and embarrassment, and not mine.

Let’s save people from embarrassment. Just not by celebrity.

3 thoughts on “Charity, celebrity and Parkinson’s

  1. Hi. I am the real Becky and I just wanted to clarify a few points with regards to your blog…

    Yes, I have had Parkinson’s for a number of years and was diagnosed in 2005 at the age of 29. The reason I am not in the original video is because I live in the UK and my best friend Allan lives in the USA.

    I am sorry that all you see is PR in our attempt to raise awareness of the condition with which so many of us are “living” but that is totally my intention. We need to raise awareness of this condition in order to appeal to the masses to help us to do something about it and most importantly to find a cure.

    Yes, my heart is in the right place and frankly whatever medium I chose will offend somebody, but, at least I am doing something.

    Everyone participating in this exhibition is doing so of their own free will including the celebrities who are supporting us wholeheartedly. The very nature of their celebrity means attention and attention is what we need.

    People with PD need to fight this dreadful condition together, not pull each other apart.

    I will continue to raise awareness until my dying day and sincerely apologise if you are offended by my campaigning but I will continue for the sake of the masses.

    Becky

    • Hi Becky,

      I’m sorry that you felt that my blog was negative and critical of what you are trying to do. This was not my intention, nor was it, I feel, what I wrote.

      I don’t feel offended in the least by your campaigning, I merely question its engagement with the modern obsession with celebrity endorsement.
      Yes, it raises awareness, but as with Helen Mirren and the Wii fit shambles, I think it is counterproductive. All her comments did were lead to people
      (good-heartedly) suggesting I get a Wii fit. Not helpful.

      Yes, I agree that awareness ought to be raised, with PD and many other conditions, and yes I agree that we ought not ‘pull each other apart’, but once
      more I must re-iterate that no criticism of yourself was implied in my post. If I am critical of anything, it is of the ‘masses’ (amongst whom I sometimes swim)
      who are more than happy to put their name to a petition or put money in a pot, just so that they can say to themselves they have ‘done something’.

      I am glad that you are working to raise awareness, and long may you do so. I may not be quite as proactive as you on this score, but I do try to help people to
      understand the condition better wherever I can. I do this in person, via my blog, and in other media as opportunity allows.

      Pete

  2. Hi Pete, I am a ‘face’ in this campaign … I did so because firstly because Becky asked me…. but mainly I am so crap at doing the ‘fund raising thing’ (I do none at all) I have huge admiration for those who do….. and Becky can’t be far off £100k. I don’t feel uncomfortable about being in the portfolio I just find it kinda sad…. that fund raising relies so much on the public when the amounts we raise would be paled by the action of those businesses within the Healthcare world if they would throw some at it….. (imagine how much that would be if instead of using money to buy celebrity faces for their own campaigns…) ….. Allan and Becky’s project is very American and it is that way for good reason….the $ target to set things going was reached in 3 days of launching….. it was amazing. So it works. Full stop.
    I know where you are coming from however …. its a fine line! And yeah we know deep down that we all bat on the same team… and opinions make a healthy debate…. growing us all.

    C

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