This post was first published on my personal blog.
So I’ve reached the 4th Parkinson’s Awareness Week since the fickle finger of fate bestowed the great misfortune of an elderly person’s disease upon me aged just 32, coming on for four years ago now. Other famous part IV’s include Rocky IV, where Rocky Balboa, at the height of the cold war, travelled to box in the Soviet Union and single handedly defeat both the protagonist Ivan Drago and indeed communism in the boxing ring. Hearts on fire, strong desire……
So I’ve decided to aim a swifty left hook at the concept of Awareness itself.
Woah! You can’t do that during Awareness week! I hear you exclaim. Oh but I can and I’m about to, well maybe not punch the concept, but certainly examine the purpose and usefulness of it.
You see a lot of what passes for awareness seems to be people with the condition sharing how it’s well……..a bit awful, especially when you’ve been ‘with’ it for a fair chunk of time. Parkinson’s UK for example, shared a video of a chap on their social media accounts who some 10 years deep, now has to wear rubber pants because of urinary incontinence. This is the whole concept of the #uniteforparkinsons campaign, share what your illness looks like by posting videos with the hashtag. I totally get that it may be cathartic for those doing so, and for that alone it’s probably worthwhile, but if the idea is to spread awareness to those who don’t have a connection to the illness, I’m not sure that this will either be achieved or have any particular impact.
The reason I question the impact is for a couple of reasons. Firstly who off the top of their head can tell me the date of another disease awareness day/week/month? You probably can if you have a direct or indirect connection to an illness but otherwise you probably don’t care, that doesn’t make you a bad person it makes you a human being, which is the second reason. Human nature. Being perfectly honest, until I got Parkinson’s I had next to no interest or knowledge of the condition. Prior to getting ill myself, my reaction to any awareness campaign for an illness, even in a more sympathetic moment, probably amounted to……
“Oh that’s a shame, glad I don’t have that” ……….back to playing / reading / watching whatever I was doing previously. If I was in a particularly generous mood, I may even have donated a cheeky fiver to whatever the campaign was…..which is another one of the drivers for Awareness, fundraising for charities….a cash grab if you will:
Again nothing wrong with that, charities need donations to fund the work they do and in the PD world there are charities which do a lot of good things which I’ve seen first hand through some of the voluntary work I’m involved in. However, and I’m happy to be corrected on this if the assumption is wrong, I would imagine most of the Awareness only reaches those impacted by PD in some way already, so thus the bulk of donations will also come from this source.
This is part of the fundamental problem with Awareness, ultimately it’s primarily inwards facing, those receiving the awareness are already impacted by the condition in some way.
A favourite expression of mine is that the definition of insanity, is trying the same thing over and over again and expecting a different result. Another common theme from PD awareness is that of the ignorant bus driver or shop assistant who may have mistaken some with PD for being drunk and thus thrown off the bus / out the shop. This is usually taken as evidence by awareness raisers that there is still work to do etc…..
The problem is that because Awareness is as I stated above, primarily inwards facing, the poor bus driver was probably totally unaware, put bluntly, whilst sad, it’s ultimately no their fault. We live in a society where as I know from driving Edinburgh city bypass each day to work, people slow down to stare at car crashes. The human race can be cruel, so just as someone with alopecia might get treated ignorantly and be called Kojak because they are bald, someone with PD might get treated ignorantly because they look drunk, no amount of awareness raising will stop that because the penetration of it beyond the community itself is minimal.
So given the ultimately inwards facing nature of awareness week, how about a change in focus and a re-brand to………….
PD EMPOWERMENT WEEK
Sharing knowledge and information that is useful to the community. Like…..
- Exercise and how it can slow disease progression
- Diet and how it can potentially contribute to wellbeing
- Progress in Research, and how to participate in and influence the research agenda
- How best to optimise medication and self care in general
To me as I first wrote two years ago, awareness without a purpose is pointless. Let’s change the whole concept of awareness so it is driven by the community for the community rather than how highlighting how awful our lives are and can or might be.