Lynne Turner Stokes was a trainee of mine.
I think she needs to go back to being JE's trainee.
From her presentation -
Secondary gain
Disability may hold advantages for them
Financial / Environmental Benefits, equipment, accommodation
Support, care and attention From family , friends / carers
Excuse for avoidance E.g of unwanted sexual attentions
Social mystique or importance Having a ‘rare condition’
Real difficulty
To identify those patients
Who genuinely want ‘out’
Need an honourable excuse
To surrender trappings of disability
I know i shouldnt less this ignorance upset me but the cold cruelty of it cuts deep.
All that i have lost, the horror and pain of being ill & disabled, the daily griefs of being excluded and unable to live as the person i truly am, and the ongoing frustration of being forced to have others do the things for me that i want to do, having to wait for someone to 'take' me out as if i were a 5 yr old.
These modifications to my home which make it look awful & cost me a fortune, this having to try to live on 1/4 of what i was earning 20yrs ago.... oh yes, they are such 'gains'! She thinks having to have a carer is nice does she? Having to be helped out of the bath, naked & vulnerable, by a complete stranger... she thinks she'd enjoy that does she? I'd like her to try it.
And "the benefit of 'social mystique'" & ''attention from friends", which in reality is actually more the bereavement of being dumped & rejected by several people I loved, because of stigma and misunderstanding caused by people like the author.... and the ongoing & continuous distain & derision everywhere you go - being yelled abuse at in the street ....
oh yes i just love the 'attention', it's so nice! one wouldnt want to "surrender" that, would one?!
And I'm not even completely bedbound, tube fed......
Witney Defoe needs an 'honourable excuse to surrender the trappings of disability' does he?!!! And if he doesn't take it then that must mean he doesn't 'want out'.
Representing all that we have to endure as 'the trappings of disability', as if they were these lovely things, like the 'trappings of wealth', is disgusting. The contempt & cruelty of it is breath taking.
Edited - to remove something possibly identifying