Myth: Parkinson's will ruin your life
...cue people with Parkinson's running marathon's, cycling, canoeing, pushing children on swings, boxing, doing Tai Chi...etc. With the comment
"people with Parkinson's do incredible things".
All great stuff...if you can do that.
As someone living with Parkinsonism, a form of Parkinson's , I cannot even walk let alone do any of that. Getting off my bed to go to the toilet is a mammoth task. walking out to garden to feed the fish in the pond I'm full of fear of falling.
I shuffle, I get 'stuck' in doorways, going around corners, turning around, going backwards. Getting milk out of the fridge, or opening my front door to a visitor demands skills Parkinson's prevents.
You have to open a door and step BACKWARDS to access the opening. it can mean leaving people standing at the open door whilst rooted to the floor 'frozen' as Parkinson's feet/mind don't do 'backwards'.
it can leave me swinging from the fridge door screaming 'now what?' with milk in hand, door in the other unable to move forwards, sideways or backwards! All fascinating. All 'incredible'.
I cannot hang out the washing, water the garden, take the dog for a walk...
I won't be running marathons...or doing tai chi.
So What do I think of the UK video?
The balance is all wrong.
Yes, people with Parkinson's do 'incredible' things, some trying to do the things they used to do. not 'incredible at all - merely what they always did.
inspo porn is an ableist patronising device of humiliation. Telling me I'm 'incredible' for doing the things I used to do , as if its perceived as not possible so is 'incredible' is 'inspo porn'.
I gave a lecture last week. Some might say it was an 'incredible thing to do' given my circumstances...no doubt about it, it was hard graft, ...but no-one saw the blood, sweat & tears it took to put it together. To travel to venue, to speak, to stay around afterwards.
You see the 'incredible' but you don't WANT to see the suffering.
'Incredible' protects you.
'incredible' is a whitewash' for relatives, friends, non-disabled people, doctors, carers.
'Incredible' inoculates YOU from reality. its an attempt to inoculate me too.
'Incredible' for the HSE (Irelands health service - that won't support you) is a testament that you don't NEED any support. 'incredible' overcomes needs. and being 'incredible' means no services offered.
giving that 'incredible' lecture probably had the HSE gleefully exclaiming I'm not disabled, not suffering, not in need.
so, everyone does 'incredible' things...not just those with Parkinson's. living at all, in this world of injustices, inequality, hardship is 'incredible' , many people are incredible.
don't call me 'incredible', or rather...only do so if you really accept my reality, feel the pain, are willing to join in the journey, and not live off the 'inspo porn' that diverts you from the disease I have.
inspo porn is easy
walking (excuse the pun) in my SHOES < NOT THAT EASY!
