Right from the time of diagnosis, we are only told about all things we cannot or will not be able to do. Along with the check that is written to the doctor for the diagnosis, it often feels like our agency is written off too, especially without a reliable communication mechanism.
Time to change the paradigm with more non speaker voices. It is time that we are allowed to make our own decisions about our own lives. And those that do not have a reliable communication mechanism, to express their thoughts and feelings, get more focussed help on getting one. My thoughts on this topic through the poem below, where I also pose some important questions for reflection.
The decisions made for non speakers
Cause damage not easily repaired
Our voices might be less reliable
Going around the dizzying loops
The deafening roars of the past missteps
The confusing glances of perennial non believers
Lost in translation
Is the burning need to belong
The life long burden
Of having to carry others’ decisions
My house is a safe haven
And i get to call the shots
The world is certainly fickle
The contrast cannot be starker
Life expedition full of unexpected turns
The one that knows where this needs to go
Has the most to lose
But the odds are stacked
In favor of ones at the wheel
List of houses like mine
Are not that common
Only question to ponder
Is if a life be left to luck?
Long for non speakers to be part of decision making
For it will save years of heartbreak and pain
Plans for non-speaker future
Best left to them
Plans vital to survival
Of non speakers and the world
How to get there
You just need to know where to look
Do not be surprised
If the answer has always been in front of you
