Who? What? When?
Where Emma discusses awareness and charity
Hello! Thank you for all the lovely supportive messages and love from last week. You are all my favourites! No issue next week as I’m taking a break…see you on the 21st April.
It’s Parkinson’s Month/Day/Week (M/D/W) I have no idea which. Either one, it’s utter bollox. OK. Great start, Emma, alienate your readers from the off 😬
Hear me out, darlings. I have opinions! And I’m not the only one:
International Parkinson’s day is the 11th of April. In the UK we have a week from 10th April - 16th April. In the USA it’s the whole of April.
Confused yet? And therein lies the fundamental problem of ‘awareness’ campaigns. They tend to be scattered. In the case of Parkinson’s especially so. Ironically echoing the myriad of symptoms associated with the disease.
To add to that our visual representations are inconsistent. The whole world knows that Pink Ribbons mean breast cancer. But do they know a red tulip is the symbol of Parkinson’s? The Dr James Parkinson Tulip, pictured below, isn’t universally used in Parkinson’s ‘branding’. And there is also a silver-grey ribbon, again not widely used.
In researching the million other awareness days that litter April, I found that in some of our charities and more worryingly, some of our NHS calendars, Parkinson’s M/D/W doesn’t even get a mention.
Add to that our image problem and the visible vs the invisible symptoms. Hell, I wouldn’t want to market us!
J.W.S. Van der Wereld, a Dutch horticulturist who had Parkinson’s disease.
The other major stumbling block is what is it we are raising awareness about?
What are the ‘calls-to-action’? Studies show that successful public awareness campaigns need a narrow, clearly defined audience and purpose. The overarching concept of curing Parkinson’s is admirable but the public (and sufferers) feel that is something best left to scientists. However much I know about a disease or disorder I lack the capacity to cure it. Yes, the charities raise money to help research. Butttt…
What sort of world do we live in that depends on charity to ensure its population can function at a basic needs level? This is utterly insane. I am writing this at a time when the food charity Sustain UK says 8.4 million people are in food poverty. If governments are unwilling even to feed us - what hope wellness?
Ok, so if not a cure then what? Meds On Time is another big area of campaign. Important, but applicable mainly within the medical profession. A tough one for your average soul to get behind to create change. I don’t dispute we need to improve health provider services; waiting times, access to services, and greater empathy. I do feel this is an inside job. Are we, the patients, petitioning the right people?
Then there is the raising awareness of how balls achingly crap it is having Parkinson’s. In the parky community we know…we live with this shit. I’m interested in how it helps when non-PD folk learn about this disease. Certainly, in my own narrow experience, people get frustrated when they find out about how awful it all is and then the cherry on the top? You mention there’s no cure. It leads to a sense of helplessness.
David Sangster asked a brilliant question of the community for his upcoming film - How does Parkinson’s feel?
I write this newsletter and other articles to support my own journey and hopefully bring some love to other people. Many of you who read this don’t actually have Parkinson’s. You have a wide range of disability, illnessness, some of you are carers, some family and friends.
Is that what we mean by Parkinson’s awarenss? Love, support and community with all who feel outside the door of perfect health?
I would love to hear your thoughts on awareness days and charity work - drop a reply!
P.S No issue next week as I’m taking a break…see you on the 21st April.