Owen as a bat. I can't find any pictures of him as a snake.

Hope is a non-activity.  Like worry–an unproductive time-filler that distracts from the moment and takes us away from what is real and happening.  The thing that is hoped for–wealth, good fortune, tides turning in a favourable direction, acceptance– is determined by factors out of our control.  We don’t hope for things we know for sure, nor do we hope we will do things we know we can decide to do.  Hope is fantasy.  Wishfulness.  Superstition.

Of course, we can use the word hopeful to just mean having a positive outlook, or holding a vision of success and moving towards it. This isn’t what I mean.  The kind of hope I’m talking about has an underlying desperation and feeds a fear that life as we know it just isn’t good enough, or not good enough in others’ eyes.  It also devastates when it inevitably doesn’t pan out the way we imagined.

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I wrote the above a few days ago and now want to change course.  Some new thoughts after a comment-conversation on a previous post.  If you want to catch up, you can follow the dialogue here.  Short summary:  My friend Louise (she really is a friend!) would like to see everyone included in society’s measures of success and value, including recognition of non-achievement or non-performance contributions, to such an extent as to redefine things like achievement so that people with disabilities aren’t left out. (L – correct me if I’m wrong!) [Louise has indeed commented below to correct me!  Thanks L...] I feel the opposite:  let the achievers have their awards, who cares anyway, do your own thing and forget the rest.  And of course advocate like crazy if people or processes are in your way.

Hope as snake-oil.  The first few words in this post were leading up to an idea I was working on, that being (desperately) hopeful, as a pursuit in and of itself, is a sign of lack of control, a feeling of powerlessness and a discomfort with the way things are.  But, this recent conversation brings to mind other culprits, other false dreams that lead us down garden paths to nowhere:

Snake-oil #1: the hope that if we push our severely disabled children hard enough to behave or perform or play more like their peers that they will be more accepted and respected.  In my experience, this simply isn’t true.  Owen was always the weirdest kid in the room and no number of Hot Wheels cars shoved into his hands changed that.  All integrated experiences were happier when I wasn’t trying to make him more like the others, or worried what the other kids were thinking.  My acceptance of Owen, and Owen’s obvious acceptance of himself, was what they needed to feel comfortable.

Snake-oil #2: the hope that, with enough education (and guilt-tripping and brow-beating), the masses will somehow shed their achievement-based conceits and embrace everyone equally, regardless of intellectual or physical abilities.  And the hope that in all facets of life people with disabilities will be proportionately represented in work, play, community.  Fabulous, but what a trap these efforts can create!  Think of the backlash of affirmative action.  Think of the soundbites of ‘success stories’ – the marathon dad, the autistic girl with the speech device, the female sprinter with prosthetic legs – and how unrepresentative these are.   The only way disability gets mainstream attention is if it’s sentimental or inspiring or sexy.  Some would like to change this (how, exactly, I don’t know);  I prefer to opt out.   (Reminds me of another therapy session in which it was suggested that the seeking of acceptance can actually be a seeking of rejection – a way to prove the stories we tell ourselves.)

Snake-oil #3: the hope that all our hard work (as parents) will some day be rewarded.  That the ends will justify the means.  Again, not my experience.   Small gains were made but nowhere near the imagined potential.  Very rarely do I hear someone say that the outcomes of therapy were what they had hoped for.   Looking back on my 12 years with Owen, 8 of them in pretty hard-core ‘improvement’ mode, my greatest achievement was that I learned to embrace my boy, and confidently engage him in the world, exactly as he was.

Snake-oil #4: the hope that, despite all the efforts that might not amount to anything, we will still die knowing we did all we could to make our children ‘better’.  A clumsy point I know, but do you know this meme?  Top 5 Regrets of the Dying.  #1: I wish I’d had the courage to live a life true to myself, not the life others expected of me.  #2. I wish I didn’t work so hard. #5:  I wish that I had let myself be happier.

• the accounts in Owen’s school communication book of achievements and interests–things he liked, friends he made, artwork he created–almost embarrassing to read when I knew that they knew these were pure folly and imaginative revisionist accounts.  To make it worse, surely they knew that I knew as well;
• a grade school assembly in which Owen is honoured with a Leadership Award; and
• Owen’s provincial report card, telling me that he learned about space and the planets, and the aboriginal peoples of Canada.

As I write this out, I see how ridiculous this all is.  I think others in my life at the time, who did not have children with disabilities, also saw the ridiculousness.

But when we’re in the thick of it, we tell ourselves these stories, attributing qualities and achievements and character to these children as though if we didn’t, there would be nothing there, nothing to marvel at. We think of these cheerful attributions as being noble somehow, or as recognizing the ‘gift’ of each child.  But it really just reveals how far we haven’t come in honouring the humanity and presence of each child.  For many of us, this kind of lefty, politically-correct interference and sloppy interpretation of what is actually real is irritating at best, infuriating and depressing at worst.  And as I write in my book, it seems like there is no one to tell, and no one who will agree.

Of course this isn’t just about teachers and therapists.  Parents can be guilty of this too.  We can fail to look upon our own children with an unflinching gaze,  unafraid of what we might see, without the judging or can-do motivational voices in our heads.

Might be interesting to see what would happen if we stopped feeding lines to each other.  And ourselves.

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.

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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.)

Since I posted the original idea for parent ‘grand rounds’, much dialogue has taken place! I’m sure no one will be surprised to learn that there is strong support from us regular folks… so I’d like to share some of the (generalized) responses I’ve received from some professionals with whom I’ve corresponded.

1. I had a twitter conversation with an old work acquaintance who shared this idea with a physician. The response was an unequivocal No. Unworkable, the doctor (via my friend) said. Risks outweigh the benefits. Limited value. Significant risks. No two cases are alike. Parents aren’t at the same level. My thoughts: Imperialist thinking that started all this power imbalance and disconnect in the first place. Equal parts fear and control. Troubling to note this mindset still exists and depressing to see it on full display. Of course twitter plays a guilty role in this reductionist dialogue, so I leave room for the possibility that there is a more fully-developed argument lurking somewhere behind these tweeted gems.
2. Several administrators/professionals offered up examples where this idea is ‘already in place’, citing examples of patient-to-patient matching and buddy/support programs. My thoughts:
   • these are well-meaning suggestions pointing to programs that are not at all like what I am suggesting, which speaks to the dearth of actual programs like the one I am suggesting,
   • responders possibly missed the point I was making (admittedly poorly) that these programs are not enough. They do nothing to equalize the power imbalance between clinicians and patients – in fact, these programs can sometimes make things worse. My partner, Carsten, gave me permission to quote him from an email exchange on this topic:
     

     Claire (see comments here) says that “parents feel powerless in medical institutions.” She’s right: it’s designed to be that way. The privacy stuff – but more importantly also the belittling, disempowering attempts at relegating the exchanges parents/patients have with one another to the realm of emotional support is a balkanization/ghetto-ization of the patient. This kind of mechanism is widely used everywhere – hospitals, medical practices, prisons, psychiatric wards, schools – to protect the knowledge of the specialists, and to ensure order and hegemony in its delivery. Institutions benefit tremendously from having only “one version of the truth” and will do almost anything to protect it. Because what they are protecting is their supremacy, their continuing ability to function – their jobs.

     What you’re suggesting is deeply subversive. The first wave of responses is the “friendly wave” – they are pretending that it already exists by pointing to their initiatives where patients/parents are relegated to the realm of emotional support structures.

     Subversive?! How intriguing. I see Carsten’s point now, although I made the suggestion quite innocently, thinking it was such a no-brainer it would be widely embraced.  I like Carsten’s calling-out of what often amounts to mollifying strategies, which can subdue and distract patients from noticing their lack of real participation.

3. Some participants in the dialogue engaged with the suggestion, gave their own feedback:
   • in fast-moving diseases like some cancers, time is of the essence and these sorts of workshops may not come around at convenient times.
   • Logistics, expense, accessibility?

   My response: Great issues/questions.  Let’s talk more.

4. A couple of participants in my email conversations responded with real interest and a spirit of exploration and curiosity. Said they would send the idea to others in their organization and see what they think, start a dialogue. My response: Where do I sign up?!

I had a thought recently, while speaking at a pediatric conference here in Toronto.  I looked around at the attendees–chatting, sharing notes, comparing stories and anecdotes, listening to presenters delivering the latest research and case studies.  Why, I thought, do parents and patients not do this?  Or rather, why do we do this only online?  Where are our conferences?

I reflected on what opportunities I had ever been given by an institution to connect with families where I would be invited to openly share and compare details of our circumstances, diagnoses, conditions, home life–with the goal of soliciting opinions, ideas, creative solutions from other patients or parents.   The answer?  Never.  Instead, I was aware of various support groups for emotional sharing, or groups formed by administrators/social workers/family resource staff to deliver how-to information sessions (or, as I experienced once, to deliver propaganda on a particular surgery.  I’m looking at you, cochlear implant.)

Truth is, institutions discourage this (sharing amongst families). I attended a symposium last month – it was about how hospitals should respond to contentious cases that go viral through social media.  The discussion was a good start but a bit depressing.  Social media is so clearly misunderstood by those who don’t participate.  And there seemed to be a conflation of the term ‘media’ and ‘social media’, as though there was some kind of agency called “The Press” who was managing all those tweets (?!).

Anyway, the most surprising statement of the afternoon was this, spoken by a well-intentioned but flustered administrator:  “We as institutions need to look at what we are doing wrong if families are turning to each other online and sharing their stories.  Obviously it means we are not doing our jobs right.”  Laughable, yes?  I almost fell out of my chair.   In this statement, the desire to own and control all aspects of a patient’s medical experience came through loud and clear.

Let me run with this idea a minute.  Imagine this:

Parents gather once a month in the Sick Kids Hollywood theater, or in Holland Bloorview’s auditorium.  Maybe cap it at 100.  Whoever wants to present their case to the group for feedback puts their ‘problem’ up on a whiteboard.  Then, the group votes on which ones get airtime.  You get 15 minutes (or whatever) to present your problems – kid not sleeping, can’t decide whether or not to get a g-tube,  surgery is recommended but you’re not sure, medications aren’t working etc etc.  With light moderation, the audience responds – with ideas, things to consider, sharing their own anecdotes, recommended ways to deal with the child, suggestions for how to negotiate with the doctor… Maybe a physician or two is in attendance, as a resource.

(I can hear the whole patient privacy argument rearing its head – I will say just two things:  I don’t have it all figured out, AND I think it’s the institutions most worried about patient privacy, not parents who are willingly sharing information.)

What do you think?  An idea worth exploring?