I hope in a relatively short period of time I won’t have to think or write about chair repairs. Today isn’t that day. My batteries have been ordered. I was hopeful the battery place would have them in stock, but because this process has been anything but easy, smooth, and simple: my chair batteries are special order. Sigh. I am waiting for the battery place to call and tell me they are here. I have an appointment for motor replacement on Thursday that will get pushed back a bit due to the battery order. Is anybody besides me tired of this nonsense, yet?
It feels like I’m on a roller coaster I can’t get off of. Working chairs and providers that actually care about the clients they serve isn’t too much to ask is it? During this, over six month, process I’ve discovered even that basic expectation is too much. I have thought over and over during this process about the people, with CP, who can’t advocate for themselves. What are they supposed to do? Are they just out of luck until their suppliers and providers get them the parts they so desperately need? That is unacceptable to me.
There has to be a better way to get quality functioning equipment to people. I’ve been thinking about how I can help. I think the way is through letting my elected officials know what I’ve been going through since going directly to my chair manufacturer didn’t do any good. Maybe by writing down my experience for those in charge of laws and regulations I can impact change. As a political scientist by training: I want to try. I have CP for a reason and it’s to help as many people as I can. I’ll keep y’all updated as I try to fix a broken system.