Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Adventurous Folks

I recently came across an article in the BBC’s online news magazine that pondered the question “Why do so many disabled people embark on dangerous feats?

It reminded me of a chap called Alex Flynn, who was diagnosed with Parkinson’s in 2008 when he was 36. He’s set himself a series of challenges that include adventure trekking, triathlons, long distance running and all sorts of outrageously excessive physical challenges, all of which are undertaken with the intention of raising money for a Parkinson’s charity. He wasn’t mentioned in the BBC article – nobody with Parkinson’s was – but Parkinson’s is, after all, a recognised disability. And I am seriously impressed by Alex’s drive.

The BBC article started with a number of wounded servicemen (notably the four who will accompany Prince Harry to the North Pole – this will be featured in a current documentary series), and moves on to look at other disabled adventurers. Perhaps not surprisingly, all of the featured adventurers and other daring types are men. Most – but not all – seem to have been daring, adventurous types before acquiring their disability (I don’t think it’s unreasonable to assume that someone who joins the armed forces is the daring type).

The article doesn’t come to any definite conclusions in answer to its own question. It suggests that

… taking on adventures [might be] a substitute for lack of success in life against ordinary measurements …

One of these ‘ordinary measurements’ is employment. It can be difficult to gain employment if you are disabled, despite the Equality Act (2010, UK). Rather shockingly, 70% of blind people of working age are unemployed. The blind adventurer, Myles Hilton-Barber, uses his feats as publicity for his new role as a “motivational speaker”. He also seems to appreciate media attention for its own sake:

“[…] Disability robs you of your confidence. I lost my dignity, my independence, but I can jump out of a plane and people will have respect for me.”

As noted in the article, the media seem to relish tales of plucky disabled adventurers doing things that the able-bodied might balk at.

Disability activist and campaigner Barbara Lisicki points out that this is effectively the easy option:

“The press is always happy to focus on the old tragic but brave stereotype. Earlier this year, 5,000 disabled people marched against government cuts. This got very little media coverage, because people find looking at a collective of disabled people uncomfortable.

“It’s much easier for them to focus on one individual and say ‘aren’t they marvellous?'”

I can’t help but think that the BBC article itself comes very close to falling into this trap. There is an unfortunate tendency to lump all “disabled people” together, when really the loose grouping of people with disabilities is incredibly diverse, and naturally includes some people who are more adventurous than others – not to mention the fact that some are more capable than others.

Lisicki also talks about what she calls ‘supercrip syndrome’ and notes that not everybody “feel[s] the need to prove [them]selves”. Of those who do, however, the BBC article posits that some of the motivational factors may be

[…] the love of adventure, to prove that disability is no barrier or, as Jaco from Harry’s Arctic Heroes says, “to bring back the feeling of being able to do something again” […]

I would add to that list a few extra possibilities:

  • The desire to do something while you still can. Many disabilities are progressive (like Parkinson’s, or Arthritis), or may come with a reduced life expectancy.

When I was at university, many years ago, I knew someone with multiple sclerosis (MS). She had quit her job and was doing a degree simply because she wanted to do it.

One of the reasons that I am making a point of taking my painting equipment out on recent walks is that I want to do the landscape painting now that I had always fondly imagined that I would do later, possibly in retirement. I suppose that doing it now makes it more likely that I might be taken seriously, though…

  • Because, not having a job (possibly due, in part, to the disability), you have the time to do it! And, of course, doing something significant means that when you do get a job interview, you can talk about it and you don’t sound like someone who sits around on their backside all day.
  • The desire to raise funds, often for a relevant charity. This was a large part of my motivation in signing up for the Just Walk event. That and the fact that I like walking.
  • Anger may be another motivator. In a recent news post, Alex Flynn wrote:

I freely admit that I am bloody angry about having Parkinson’s and frank about the fact that I channel that anger to more positive and constructive outcomes. It often pulls me through the toughest races and, certainly, assisted me in running 20 marathons in 10 days when injured.

  • I also wonder whether some people acquire a “don’t care” attitude along with their disability, a sort of semi-suicidal impulse that overrides the standard sense of self-preservation. I can understand how this might work; you feel as if your life is worth less now – perhaps it is bound up with the fact that you know that your life will be curtailed or restricted by your disability or illness – and you decide to take risks.