I’ve had a hard time articulating a succinct message of the book, even to myself. Carsten encourages me to not worry about it, says I’m an author with a story and I can promote different aspects of the book as I see fit and no one is looking to me for an expert opinion. I know he’s right, but it doesn’t relieve my own anxiety, or make it any easier when people ask what the book is about or what I hope readers will get from it or whom I hope to reach–and I have no satisfying answer.
The conversation on the radio helped clarify things. The resonance of the ‘fake work’ topic with listeners/readers highlighted for me that there is more to say and more to explore. I’m usually pretty good at sorting these things out in words so I’m going to give it a go. Please give me a hand and comment! I’ll be thinking out loud over the next few blog posts.
What I mean by fake work
When I say fake work, I am to referring to the endless paperwork, goal-setting, output measurement, follow-up, assessment etc, required of parents and patients, by institutions and agencies, in order to avail ourselves of their services or to prove that a service is working. Some of it masks as ‘intake’, some of it is job evaluation or monitoring of the employee, some of it is a compiling of criteria so that the institution can decide about funding, placement etc. ‘Fake work’ doesn’t necessarily refer to the therapies themselves.
The work of jumping these hurdles is ‘fake’ because most of the time, it doesn’t serve the client directly and in fact gets in the way. It is primarily there to serve the institution and ends up discriminating against all sorts of people: the non-English speaker, the inarticulate, the proud, the guileless, even the honest. Parents who are successful at obtaining services for their children know how to work the system and say what the administrators or assessors want to hear. Sure, paperwork allows agencies to sort things faster–but that is rarely in the client’s best interest.
I can’t make the call as to whether or not these things are actually useful at some level–I just know that the requirement to report and justify and prove eligibility encourages parents to bend their situations to fit the criteria, and widens the gap between those who get services and those who don’t. Parents who are good at completing the forms get the most services and resources. And parents are told that measurable outcomes are the only way to really tell if something is helping (more on this later). Hilariously ineffective and blunt instruments when trying to assess the lives of families and children with complex needs.
This over-administration of our lives is what I mean by fake work. But it’s not the only problem. Coming soon: Cheerful Pretend, and Hope as Snake-oil
(Oh and another thing! I haven’t even touched on the effects that all this monitoring and surveillance and assessment has on a patient’s relationship with the institution, or the effects on the relationship between parent and child, or the power imbalance it creates, or the adverse effects it has on our ability to manage our own healthcare… But, this is a rant for another time.)