>What does living with disability teach me about working with a broken system?
This week I had the opportunity to bang into two broken systems.
First, the public health nurse who came to do my annual PCA evaluation (wherein she evaluates whether I still need the services of a personal care attendant) asked if my husband and I had discussed getting divorced so that, when I have to quit work, I will be able to continue to have a PCA. Second, I rode Metro Mobility, our local paratransit system and waited for my ride for an hour beyond the promised pickup time.
As I was bumping along in the bus, I realized I’m going to have to get better at working with broken systems. The good news is I’m not alone.
I googled “broken system” and discovered that I am surrounded by them. Our financial, immigration, education and healthcare systems have been described as broken…and that’s just the first page of results!
So, hmm, what do I know about broken systems? Oh, right! I live in this body, which some people would no doubt describe is a broken system. Can’t get much closer than that.
Learn as much as you can handle
Knowledge is power. The more I learn about how this system works, the more resourceful I will be in response.
On the other hand, there is more to know than I can take. I have to look at the big picture and make some guesses about what knowledge will be the most helpful. I have to learn a piece at a time or I get too overwhelmed.
Identify the experts
There are people who already know a lot about the system. If I can figure out who they are and talk to them, they can help me learn more quickly and efficiently.
I also need to remember that some of the experts do not have titles or letters behind their names. They are, as jargon has it, “consumers”– those folks who have wrestled with the system from the inside out.
Notice what’s working
Broken systems are so obviously broken that it’s easy to miss what’s working. I need to pay attention to what goes smoothly and easily. When I find those things, I need to:
- thank the folks who are doing a good job
- think of ways I can strengthen these pockets of righteousness. (See “advocate” below.)
About what’s not working…
What’s glaringly obvious about a broken system, of course, are all the things that are wrong with it. When I bump into those things, I can ask two questions:
- Can I make it better?
If yes, then hahloo hahlay, I should just have at it! If no, see question #2.
- Could I fix it if I had help?
If yes, then I can rally the troops and take action. If no, see question #3.
- Do I know who can make it better?
If yes, then I can contact them, let them know what I see is wrong and tell them any ideas I have about how to fix it. This is called advocacy. Unfortunately, many of the consumers of broken systems are unable to do it because of lack of knowledge and resources (including personal energy). If I can do it, I should! (Real Genius fans say it with me: “it’s a moral imperative.”)
If no, then I can do research to try to find out who can influence this system.
What if it just stinks?
Suppose I can’t–even with help–do anything, my advocacy efforts have come to naught and the system is still broken?
Sometimes, the best offense is a good defense.
I need to protect myself, body, mind and spirit.
Having learned about the system and identified the experts and influencers, I can figure out what rules (nonsensical though they may be) are in place that might help me get what I need.
I can bear in mind that broken systems often don’t make sense; it’s not necessarily that something’s wrong with me.
I can cultivate a state of mind and spirit that allow me to exist amidst the chaos. I need to put some thought, creativity and effort into creating my “bureaucratic happy place” whence, faced with the inequities and complexities of the broken system, I can retreat.
As it turns out, I have a lot of ideas about working with a broken system. Isn’t it great (sarcasm) that I will have so many opportunities to practice them!