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For #IDPWD2020, a temporary profile pic from my most recent brain surgery in July 2016.
Considering it's the third time he's used that incision, I'd say my neurosurgeon did a bloody neat job.
What and why?
A ventriculoperitoneal shunt to drain excess cerebrospinal fluid.
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Considering it's the third time he's used that incision, I'd say my neurosurgeon did a bloody neat job.
What and why?
A ventriculoperitoneal shunt to drain excess cerebrospinal fluid.
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I have either decompensated hydrocephalus or longstanding overt ventriculomegaly of adults (LOVA): it depends who you ask.
Basically, I'm one of the lucky 10 per cent of people born with #hydrocephalus whose body and brain come to a handshake deal in utero about ...
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Basically, I'm one of the lucky 10 per cent of people born with #hydrocephalus whose body and brain come to a handshake deal in utero about ...
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... how to deal with the raised intracranial pressure.
Nowadays, it's usually picked up in infancy. Back when I was born? Not so much.
I wasn't diagnosed until my hitherto compensated hydrocephalus 'decompensated' after a head trauma in April 2014.
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Nowadays, it's usually picked up in infancy. Back when I was born? Not so much.
I wasn't diagnosed until my hitherto compensated hydrocephalus 'decompensated' after a head trauma in April 2014.
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Since then, I've had three brain surgeries, because shunts are a relatively simple piece of plumbing that have high rates of complications.
I've also developed some additional neurological issues and a post-surgical headache syndrome.
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I've also developed some additional neurological issues and a post-surgical headache syndrome.
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In line with the social model of disability, which says it's not our impairments that disable us but the social systems in which we live & work, the biggest problems have not been medical but trying to deal with systems that can't or won't adjust to meet my needs.
#IDPWD2020
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#IDPWD2020
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Sometimes, it's systems that are *supposed to be* 'accessible' but in reality are only accessible to some people with disability. (I'm looking at you, #NDISfail.)
#IDPWD2020
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#IDPWD2020
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Sometimes, it's systems that provide the same (poor) standard of service to everyone, but in ways that mean even poorer outcomes for people with disability. (*cough, #Centrelink, cough*)
#IDPWD2020
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#IDPWD2020
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Sometimes, it's systems that treat people with disability as 'risks' to be 'managed' rather than people who need a bit of extra support to flourish. (I'm looking at you, HR departments.)
#IDPWD2020
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#IDPWD2020
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And sometimes, it's not my neurological issues that are the most disabling but my PTSD, which can be triggered by people doing seemingly ordinary things in a way that causes me to recall, and in some cases re-experience, past trauma.
#IDPWD2020
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#IDPWD2020
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I'm lucky to have good support from family & friends, and from my #chronicpain & #insomnia tweeps.
Not everyone is so lucky.
But it shouldn't be a matter of luck. An inclusive society ought to embrace the diverse abilities and needs of people with disability.
#IDPWD2020
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Not everyone is so lucky.
But it shouldn't be a matter of luck. An inclusive society ought to embrace the diverse abilities and needs of people with disability.
#IDPWD2020
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Want to do something to make the world a better place for everyone?
Have a look at this thread (h/t @DeSouzaRN):
https://twitter.com/vanamalihermans/status/1334242574664548352
#IDPWD2020
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Have a look at this thread (h/t @DeSouzaRN):
https://twitter.com/vanamalihermans/status/1334242574664548352
#IDPWD2020
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Finally, be sure to check out the legendary Stella Young's #TEDx talk on why people with disability are not inspirational (or, at least, not in the way you might be used to thinking of us):
https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much
We miss you so much, Stella!
#IDPWD2020
12/12
https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much
We miss you so much, Stella!
#IDPWD2020
12/12
