The Never Trending Story
Where Emma talks media.
Thank you for the lovely messages and photos of yourselves! It’s so nice to get to know many of you better.
I’m building a directory of bloggers, newsletter-ers, articles etc all about Parkinson’s if you have anything you want to share drop me an email:emma@whostolemydopamine.com or reply to this letter ❤️
Time to get the popcorn 🍿out…controversy, delight and TV ahead.
This week the charity Parkinson’s UK released a new advert:
It doesn’t take a lot of research to realise the Parkinson’s community is divided about the advert. The reactions range from trauma, frustration and confusion to positivity, empowerment and progress.
There are a lot of comments regarding the language: “it doesn’t have me” and “it doesn’t define me”. Sadly, given the complexity of the disease with 40+ symptoms, it does have most of us in its shit-grip. When you are affected in every area of your existence it can only define you and your actions.
But the other aspect of this is hope. We don’t have to be ‘had’ or ‘defined’ if there is better care, medications or cures. I would suggest the advert needs to be clearer if that is the intention it wishes to convey. I’m not even completely sure if we are sick or not sick 🤷🏼♀️
It is good to see younger folks, genders and minorities represented, after all, Parkinson’s ‘doesn’t care who you are, how old you are or what you’ve done in your life’.
At the end of the day I’m not quite sure what the advert wants me to do…isn’t that what we are conditioned to with advertising, to DO something? ‘Information and support’ feel...diaphanous.
This is in contrast to their previous advert (warning: You may need a small lie down to recover.)
This one is certainly more controversial. I find this to be a bombastic ‘flies in their eyes’ style ad, which considering I’m the one with the thing they are highlighting I feel like shit. The horror of the initial blow obscures the positive CAN stuff.
One of the issues is that it tends to be people with Parkinson’s who view these or at least seek them out but they aren’t meant for us. But they are intended for the non-Parky folks. I wonder how they feel about these? I only know people who know me and are affected by Parkinson’s via our relationship.
Compassion fatigue is a big problem for charities, we are all overwhelmed with…well everything! That in turn leads to cynism about charity overall. Understandably there is a sense that the money gets swallowed up in admin, advertising and wages as opposed to directly helping the people it was designed to.
I know most charities can only afford to air a TV ad a few times but I would love to see how much is raised as a direct result and if it is worth the effort! (If you are interested in Parkinson’s UK general expenditure you can find it here)
I don’t know about you but when ads come on I mute and pick up my phone, make a cuppa or take the dog out…This makes me wonder about ‘actual’ viewing figures.
Here is a piss-take charity video created to highlight how the messages of charity can get obscured:
Parkinson’s is popular at the moment with a new TV series where the main character has PD. Great to see this fastest-growing neurological disease getting some coverage. It may or may not go far enough but it is a start. (Here’s a link to the book)
It has lead to press articles and social media sharing. Certainly, in my tiny corner of Twitter, the adverts specifically are being widely discussed.
All highlights a wider issue of contradiction. On one hand, I want disability and chronic illness ‘normalised’ and on the other, I definitely want a cure and end to illness!
Wider awareness certainly can make my daily life easier, if people understand I can’t leap around the same as other folks my age. If I get cut some slack for being slow and knackered, then it is good. But I don’t want to be seen as a victim. Just kindness and gentleness knowing that everyone has something going on and being patient is the key to a functioning society - regardless of your illness, wellness or status.
What do you think of these adverts & TV show portrayals? Pop in a comment below.
with love
Emma x
Wow, that older ad was…something! I know we all have to try to stay positive, not let our conditions define us, blah blah - but ads like the new one run two risks. One, they don’t show the reality enough, and two, they tip far too easily into inspiration porn, one of my biggest bugbears. Look at me, living my life, furiously ignoring my Parkinson’s/ME/COPD! Aren’t I inspiring to you? And that leads to being told you’re lazy/not trying hard enough/“giving in” if you’re not relentlessly cheerful and pushing past your limits, two things which are not endlessly sustainable.
As for not showing the reality enough, I can only quote my friend Val, who died of MS. Once, when we were in respite together, there was a local news item on MS awareness, and they interviewed a woman who was still fairly mobile, could walk to the shops, etc. I could feel the steam coming off Val in her recliner next to me - she used a wheelchair which she couldn’t push herself in, had some difficulties talking and swallowing, and was legally blind. Finally she exploded. “If they’re gonna put MS people on TV, why the fuck do they never choose people like me?”
"Just kindness and gentleness knowing that everyone has something going on and being patient is the key to a functioning society - regardless of your illness, wellness or status." This is key. Thanks, Emma