True advocacy for people living with hydrocephalus causing brain injury, the invisible disability, is lacking and needs improvement. It’s so much more than the light touch approach of support currently being offered.
Brain injury touches EVERY aspect of a person’s life and impacts it beyond recognition.
As a society, we have a long way to go!
Personally, given my own experiences, I find it requires me to advocate more strongly for what others (simply) cannot see. While I understand from their viewpoint, I do struggle with people’s lack of empathy or, at a minimum, willingness to understand. It’s not like the information isn’t freely available to anyone who cares enough to know. Nonetheless, I find this to be the case regardless of them being told certain things, sharing facts, or doing awareness.
I do all of this whilst fostering an understanding for those, around me, who lack insight. Sadly, understanding is a sentiment which is not as reciprocal as one would hope. And, while I acknowledge that empathy does not come naturally to most people, it’s still not an excuse!
NOTE: I’m very well aware that it is physically impossible to understand something one cannot see.
Without an all-encompassing advocacy for genuine change, those of us living with an invisible condition and disability, like me, remain vulnerable to the system. Simply put, other peoples biases and ignorance are our nemesis.
It’s tiring having to constantly prove yourself to people when you have a brain injury…and borderline cruel. Discriminatory at best and a violation of one’s human rights!
We are cast aside and discarded by society; family, friends, employers and anyone who crosses our path due to their lack of understanding.
“There’s none so blind as they that won’t see.” – Jonathan Swift
Want to understand brain injury the invisible disability?
Google it! I did. I still do. And, I continue to learn. It’s a painfully slow existence!
Educate yourself. Be aware. You never know when the shoe will be on the other foot (not that I wish that on you)…regardless of whether it be you, or someone close to you.
FACT: Life happens to all of us, at any given moment. One can only hope and pray that when it does, there’s enough understanding, help and/or support available to see each of us through.
Why do I bother?
Sadly, having had firsthand experience of systemic failure I’m left to fend for myself and figure my way through the maze. It is by no means an easy task! I have no support. I have no help. The reality is; when you look fine, you must be fine. To look at me one would never know the extent of the damage beneath the surface…
Truthfully, most days I just want to give up. That’s NOT an option! Therefore, with determination and resilience as my driving force, I persevere – painfully so (at times). Intently focused on effecting change, probably as much as I am on helping myself. Because I’m worth it.
Thankfully, as I’ve said before, Cognitive Impairment is NOT the same as Intellectual Disability.
As I navigate self-rehabilitation of my brain injury, I’ll share more of my progress and journey with anyone who cares enough to know, or feel they might benefit from my experience.
Watch this space!
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