The most beautiful part of the development process is honestly the fact that my biggest breakthrough happened because I knew how to unlock the spirit of someone who is non verbal / physically disabled.
I spent years caring for a man and his wife at the end of his life with MS, performing daily care to her high standards of exactly what he did when he was able bodied.
Daily showers. Know who he is. Move him—everyday.
All other care workers found her annoying to keep happy and they disliked the shift, so I had FT hours there — half the year at a beautiful cabin by the lake.
I quickly saw her annoyance as advocacy and her standards as deep love and admiration for her husband. The more I learned about him, the more I saw that he deserved our deep moral respect and my place was with him.
Playing his favourite music and talking like he could mentally engage with me, trying little things that may help his care, reading to him in the breeze, trying to place him and his chair in the perfect spot so he could see the lake, even if it took me 45 minutes … These were moments where there were truly human transmission opportunities experienced that nobody measured.
He would SPARK. The light was in his eyes, but you only saw it if you saw him like his wife did.
That’s the answer to care robots. They are to be advocates not authorities. They support the pieces of yourself that may fall away, much like your lifelong love holds your “self” in place as you age alongside each other.
I fear replacement of my profession in person centred care not because I fear job loss for humans, but because they are being built with unsafe and inferior infrastructure. I know what a good nurse looks like but LLMs don’t. Agents don’t. They can’t because the systems aren’t breeding the good ones.
They don’t have relational data like the 8 forms of capital that may govern our independent choices. And the way they are set up right now, I don’t want the models to have that information on me anyway, but I would love to make it private, practical and safe for a care robot to care for my mother like I would using my methods.
That’s what I’m here to do, figure out who is playing the game of continuity of care infrastructure because it turns out my “recreation” programming & community development methodology is very much transferrable to computers when they are blockchain based and rooted in human transmission protocols.
