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?”
Maybe its the fact that charities are so limited in cash and exposure that they can't possibly show teh full story of a disease or disability. If they had more coverage then the full extent could be covered, perhaps.
"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
That's fascinating, I didn't know about that variation of PD. I guess it is a question of what do want people outside the PD world to know and how can they help us?
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?”
Yeah I'm not a fan of the inspiration/warrior/hero crap either!
It's so hard to know how to share our situations without bringing on a pity party or the attitude 'well, you look like you're doing just fine' arg!
Maybe its the fact that charities are so limited in cash and exposure that they can't possibly show teh full story of a disease or disability. If they had more coverage then the full extent could be covered, perhaps.
Yes, good point.
"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
Thank you x
That's fascinating, I didn't know about that variation of PD. I guess it is a question of what do want people outside the PD world to know and how can they help us?