Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

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.

7 thoughts on “Adventurous Folks

  1. In Germany the government and companies often support disabled people who seek work. Disabled people who have the same qualifications are prefared. Isn´t it the same in USA?

    My other question: do one – one disabled – have to do something extreme in order to prove oneself or to get respect from people or to feel one is alive? From my point of view no, not at all. Do it for yourself, enjoy it, feel strong. But do it for yourself thirst of all or do it with and for your friends. Not in order to prove something. That is why I like the point you signed up for walk because you like walking. You are worthwhile human beings. And yes do it now. And yes do find your own way to fight against disabilities. To fight for yourself. And I have to say almost each of us have to faight against some “disability” in any form.

    “People find looking at a collective of disabled people uncomfortable”. I can both understand that and find it sad. In my highschool there was a special project where we were organising disco and meetings for disabled children. Personally I find it very helpful. It was not easy to deal with that but this way we all learned to deal with something that is a little bit different than “a normal view”. That is why I do also very appreciate when disabled people do not hide at home but go out and live their life with, how to call???, “abled” people. Just one example, once a disabled girl who cannot walk “normally”, came to a dance club with their friends. I find it greate.

    • I don’t know about the USA, Ag; I live in the UK. But yes, it is, in theory, the same here. However, in practice… when you attend a job interview and are later rejected, can you say for certain why you didn’t get that job? If you ask for feedback, you may not get the whole story.

      For example: I was recently interviewed for a full time job in the field that I used to work in before having my family. There were two vacancies and five candidates. The recruitment agency liked my chances, because my experiece was very relevant. I didn’t mention Parkinson’s – this isn’t a disability story. In the end, I didn’t get either job. I was, apparently, third best; the agency told me that. They then said that the two successful candidates had “more relevant experience” (you hear that a lot if you ask for feedback; I think it’s a phrase they teach at Human Resources school). I’m not sure, but “recent” might have been added, too. When I pushed for more, the agency did say that the employers had referred to my career gap and were, apparently, concerned that I wouldn’t be able to cope with the pressures of a tight deadline because I hadn’t worked for a few years. I think it was meant to be a secondary concern, not a primary reason for my not being offered a job. But it is seriously worrying (particularly when you take into account that they knew about the career gap; it’s right there on my CV). Obviously, when I get another interview, I’m going to talk up my immense enthusiam and freshness resultant from that very career gap.

      I have been interviewed for an upcoming piece in the Parkinson’s UK magazine on the topic of recruitment, and I will be writing another blog post on the subject.

    • In response to your second question – no, I dont think that anyone has to do extreme stuff in order to get respect or to feel alive. But maybe once you start doing it, it becomes addictive. The phrase “adrenaline junkie” comes to mind. And, of course, it could be a response to depression – an attempt to lift oneself out of an emotional hollow caused by being disabled – or, indeed, to anger, as noted by Alex Flynn. Most of the people mentioned in the article were once able-bodied. It may be of interest to compare attitudes between those who have lost ability and those who were born without it.

    • And lastly – I agree entirely with your third paragraph. It is both understandable and sad that we find disabilities difficult to look at. The reason is, I think, that we fear them – the disabilities, not the people. We are scared of being like the disabled people, and – in many cases – we don’t fully understand the disabilities. Which makes the disabilities scarier. A lost limb is easy to understand, easy to emphasise with; bizarre neurological problems like Parkinson’s (I use this example because it is the one I know something of) are harder to come to terms with.

      I think that the more disabled people are integrated with society, the better. I also think that “we” (I include myself, although I do not feel as if I am truly disabled) need to talk about the issues. We need to find our voices, not just hide behind a conventional appearance and pretend to be like everybody else – but it is very hard to do so. Most conversations don’t have space for that kind of topic, and blogging away in a corner of the Internet is only going to get me so far…

      There seems to be a move to try to keep disabled children in mainstream schools more; this is, I think, good for society in general. Whether it is good for the disabled children (who will not get specialist support), the teachers (who will have additional strains) or the academic schooling of the “normal” children (which may get disrupted), is hard to say. It is a very fine balance, but one that is worth trying to reach. When I was younger, I used to help out at a riding school, and we had sessions with Riding for the Disabled (this is a charity in the UK), which was brilliant.

  2. Alex is a hero, and should be more supported by the PD Community especially Organisations. Nonetheless he will do it either way. I am glad you can truly see what he does. As for your blog, it continues to inspire me so beautifully written…. truly

  3. Alex is certainly a very remarkable person. I wasn’t aware that he lacked support. I found his Web site quite early in my journey into Parkinson’s – I was searching for references to young-onset Parkinson’s in the UK and stumbled across his story. I gather that he was previously inclined towards this sort of activity, but that he’s ramped it up since being diagnosed. And I understand that he holds down a full time job, too.

    Rereading some of Alex’s posts suggests a new reason for someone with a disability to take on extreme physical adventures: anger. Alex says that he is angry about having Parkinson’s, and that he redirects that anger into running or other activities.

    And, Boo – thank you.

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