Brainblogger on voluntary work
I highly recommend this excellent post from Brainblogger. In it he explains his difficulties maintaining voluntary work with a fluctuating condition and the struggles his employers seem to have understanding the nature of his disability and therefore the need for a flexible approach to tasks.Brainblogger is like so many of us who want to work rather than rely on benefits, but who's disabilities and the realities of a tough employment market mean that work remains a desire rather than a reality.
2 comments:
When Annie and I got married, it was our plan, if you will, that at some point I would retire and SHE would then take up the burden of bringing home enough bacon to keep us going. I'm 14 years older than she, and we figured that that would work out nicely.
Over time, and as her Ehlers Danlos became more and more of an issue in her day to day existence, working became more and more of an issue:
Dress codes - because she needs to wear 'runners', and many places won't allow them.
Comfortable chairs - many offices don't HAVE chairs available which are comfortable enough for her to spend 8 hours a day in.
Flexible time: Because her condition often requires Doctor visits and other things that place demands on her time that conflict with a regular work schedule.
Job concentration: Because remaining seated and in one place for long periods of time is, essentially, impossible for her - or at the very least, more difficult than it is for 'normal' people.
And you're right. No one understands all of that. She 'looks' normal - except for those times when injury (which happens often) requires her to wear finger or wrist or foot and ankle braces.
So she does not work. She gets a SMALL stipend from Social Security because she is 'Disabled'. if I die - she's fucked. Period.
One of the few things I find truly frustrating about living in England is the general public's view of work and benefits. I'm told,often by strangers on the bus, that people on benefits are not human. And that people with disabilities (physical, mental, or otherwise) shouldn't hold jobs because that is somehow inconvenient for other people. I've worked this out to mean that the disabled should stop inconveniencing people and accept that they are not human. I makes me screech. Course, given my accent, people assume that the screeching is my default position.
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