The Unintentional Advocate
Written By: Brenda Agnew, Client Liaison
It is a term, for good or bad, that has been connected to me for the last thirteen years. In this edition of Brenda's Corner, I will explain the roots of this role I have assumed, what that means, and what's expected of me.
The black binder – where it all began
While always being someone who seems to have a deep-down desire to right wrongs, and to speak up when no else wanted to, I never considered myself an advocate. When Maclain was born, I seemed to have stepped into that informal role as his advocate, and it was very unintentional from the onset. It was not a role I wanted or aspired to, or sought out, but one that I seemed just to have organically inherited when he started his journey in the NICU. Instinctively I was drawn to reading all of his charts, asking all the questions, never missing a medical round, and researching things on the side, so I knew what was being discussed. I vividly remember very early on in our stay reaching for the "black binder" that always sat perched on the bedside table, and settling in to read it. I had just opened it when I was firmly scolded by the nurse, who told me it wasn't for my eyes and that I wouldn't understand what was written. I learned three things from that experience.
1) Don't ever scold me like a child for wanting to be involved in my son's care
2) Don't ever tell me I don't understand something
3) Don't tell me I can't have access to something that I know I have rightful access to. I promptly took the binder back from her hands, closed the curtains and read it all the way through. I may not have understood all the technical terms, but at that moment, I learned that I needed to be my son's advocate. Every morning, I made it my priority to review it along with the nursing flow sheets and made sure to bring myself up to speed on every word that had been recorded regarding Maclain and his care.
Thirteen years later
That experience was the beginning of the unintentional advocate. Thirteen years ago, I started down that path, and today I continue on that journey and advocate for my son. My family, along with other children and families face challenges and uphill battles in many situations. And honestly, it is disheartening because I know that the things I have to deal with regularly are not new issues. We are not the first family who has a child with a disability or a medical complexity. Yet we are always up against the education system, funding models, healthcare supports, accessibility issues, and the lists go on. And each time I find myself faced with another head-scratcher, I seem to be unable to move on. I immediately get caught up in trying to do something, anything, to make it better, more accessible. It always seems so simple to me, to do the right thing. To remove a barrier, to have the humility to admit a mistake, to do what I can to work towards a solution that works for everyone. It is never rocket science, never. Attitudinal barriers further complicate many of the challenges we face, refusals to accept the change or lack of insight, and when dealing with human behaviours, things always become more complicated.
The “Fight” continues
I am tired, exhausted, really, and with each passing issue I lose more of my pep, and I keep hoping that one day I won't have to be an advocate, intentionally or not, but I know that the role is not one I can walk away from anytime soon. I want so badly to scream some days, "It's not that hard to do the right thing!" "Why is this always a fight?" And truth be told, I have been known to scream things along this line, but not always so censored. But when it is all said and done, I allow myself a good cry once in a while, pour another glass of wine, and find another show to watch, I recharge, and I reset, and I get ready for the next round. Wash, Rinse, Repeat.
As a former client, Brenda acts as Gluckstein Lawyers Client Liaison to support and advise our clients and their families throughout their Medical Malpractice and Birth Injury case. She tirelessly advocates for better systems and programs for children with special needs. Thank you for joining us for this edition of Brenda’s Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at firstname.lastname@example.org.
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