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.)
Jen, I love the way you point this out. I am not sure, but maybe your anxiety in saying this out loud, is that no many people are saying it, even if they feel it. I know as a community worker, I sometimes deal with parents who are going through many ups and downs. They may have an unrealistic view of something pertaining to their child, they may be stressed out because they are trying to reach some goal or they don’t understand my methods, because the outcome is not obvious to the naked eye (other people not in the child’s life) or there is no concrete ending to the task.
What is always meaningful for me, is the smile on a child’s face, or when they are proud of themselves or if a parent tells me how happy they are with somethings new their child did, even if it is small. These things may not mean much in the write up of a child’s success and goals when I produce them to a colleague who may be following the child, but I always include them because they mean enough to individual themselves!
The goal setting always made me laugh. The therapists found it odd when I would ask why we were setting goals like ‘sitting’ rather than ‘will be supported in x way to try to sit’
As soon as you starting talking on Ontario Today, I froze by my kitchen sink and didn’t move until you were finished. I have a son with multiple special needs (respiratory, anatomical weirdness, deaf, sensory issues) who has kept me chronically exhausted since he was born over four years ago. I am brimming with love for him, but also with rage for institutional incompetency and unfulfilled expectations. I am trying to do my best to give him every opportunity to achieve, and perhaps this will someday translate into Doing Less. For now, my son is a pretty happy little guy, but when do I get to be Just A Mom?!! I suspect your book will offer me some of the insight that I need. Waiting for my copy in the mail and will read it voraciously the day it arrives . . .
@Rebecca – so glad you were able to tune in that day! Hope you could see (hear) that you’re not alone with your frustrations… The book will illustrate this even more. It was so hard to articulate the hows and whys while I was in the thick of things but I knew something was off, or at least deeply unsatisfying. Writing the book gave me a chance to put some words to it.
Mind if I use my own platform to digress? Owen’s dad hated that Owen slept with us. Was vigorously against it for all kinds of reasons. He actually launched a campaign to correct this grievous wrong, naming it after a then-current college campus initiative called ‘Take Back the Night’. Every morning and every night he would state his case, set up a separate bed for Owen, work on schedules that would gradually ease him out of our bedroom, bargain like hell to negotiate a deal everyone could live with. Sometimes I could hear him in the bedroom, rearranging furniture or fluffing pillows, calling out ‘Take back the night!!” Funny in hindsight, but he was that serious about it! Mostly because he knew that if he didn’t agitate on his own behalf, no one else would.
I guess this is my roundabout way of saying: unfortunately it’s no one else’s priority for you to be ‘just a mom’! You might have to defend your rights like crazy.
Thanks for writing,
I had not considered this aspect of bureaucracy before. the idea of fake work resonates so clearly. I fear I might indulge in it a little myself sometimes. The obsessional need to put certain things in place unnecessarily before feeling able to take the next step. Is it possible? Can institutions. like people, become obsessive compulsive. I fear so.
By the way, Elizabeth Aquino sent me here . I’m very pleased to meet you and your wonderful writing here.
Fake work! You are so right. Thank you for this concept.
Our daughter is tech dependent. We do the assesments and forms in part so that she is eligible for care. In one case, when we were pressing for speech and language help, the report came back saying that we had never before expressed a particular concern (with language development). Well, we had been concerned, but there were too many other things to work on in the time we had with her regular therapist to focus on it. And in fact we had expressed concern, but had subordinated it in favour of other priorities (feeding, gross motor development, physio). We know now that we have to make a fuss about everything.
Sometimes we would like to stop the assessments so that we can shift out of the evaluative thinking that positions our daughter as a medical case and just enjoy what she does. But we won’t actually stop the assessments because that would limit her access to services later on.
It’s not only the fake work either, it’s also the reports that are sent back to us. I am glad for the communication, but there is one part that I really don’t like. Often the therapist writes about what I have said during an assessment, and repositions it so that things that are bothering me are listed as positives. Or, where her dad and I say what is going on, they say it is what we perceive (fair enough, but it’s often also the truth).I feel like someone is speaking for me and that it often doesn’t reflect what I have to say. I would prefer to have a report that went: “we talked about this” or “we agreed to try this”, etc. Hmm.
And you are exactly right about the connection between reports and criteria, parents learning to work the system, and about privilege versus institutional disadvantage if you aren’t educated/articulate/confident or if you have very little time for other reasons.
At one point we desperately needed some overnight help. We knew that if we used the real reason for this need it would go unfilled. Our nurse supported the request, knowing the real reason, and saying to our case manager that it would save resources later on to provide the service now. But to actually get the service we had to redescribe the situation and focus only on a physical complication, rather than on our own exhaustion and psychological breakdowns at that point in time. Our daughter’s well-being is affected by ours, but the care offered wasn’t, from a bureocratic point of view (the nurses were great), about her well-being. It was strictly about whether the need fit a small list of possible physical situations (not even all the ways in which our daughter’s own physicality might be risky to her). Her situation changed radically a few days after our nurse went to bat for us, so we didn’t end up using the respite, but the lesson remains.
@Jenn – thank you so much for this comment! So many things to relate to here, but one in particular stands out: you have reminded me of my own discomfort I have felt, relying on others to record our meetings and then filing their notes as the ‘official document’. Mostly, the mistakes or inconsistencies were innocuous and not worth mentioning, but I wonder–what if we had to look something up? Or refer to them in court?
Wouldn’t it be great if parents could submit their own notes as well? Or ‘sign-off’ on anything that gets added to the healthcare record? Nothing to stop us from keeping our own notes, of course.
Thank you again Jenn – really appreciated hearing your story.