Tag Archives: hope as snake-oil

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

What I mean by Hope as Snake-oil (3 of 3)

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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.

October 2007 071

Fake work, hope as snake oil, protecting childhood – and other inspiring topics

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I was interviewed on CBC Radio One, Ontario Today with Rita Celli today.  I don’t listen to radio all that much and wasn’t familiar with the show – but a friend’s referral to the producer of Fresh Air started a chain of connections that led me to Ontario Today.  The format is: interview for about 15 minutes, then call-in for the next half hour or so.

I was worried that I wouldn’t have enough interesting things to say, or that I would be misinterpreted, or that a caller would challenge me on something I said and I would stumble on a response.  If you tuned in, you would know that none of that happened.  A positive experience all round and I would do it again in a heartbeat.  You can download the podcast here.

I cringed only once.  It was when the host, as a lead-in, characterized my message in a way I was uncomfortable with–reducing my message to ‘everything is fake and hope is snake oil’.  I had a chance to explain myself, to say “Well, not quite…” and explain that I thought the healthcare system required us to engage in fake work and cheerful pretend and wishful thinking.   But I felt defensive.  I thought, “Oh no!  Parents are going to think I’m saying that what they’re doing is useless!”

But in the end, it was the callers, parents and therapists alike, who called to say that they also felt that there was too much work, too much pretend, too much hope that leads us down garden paths going nowhere.  I think we could have taken calls all afternoon and chatted away for many more hours–there was no shortage of stories.

I was nervous before the show and made some notes, included below.  These were the things that I absolutely wanted to say before the call ended.  I think I got most of them in.  And I think I now have my next few blog posts planned out . . . !

  • I am sharing my story for others to take from it what they will.
  • I don’t have specific advice about actions. My own learning was about self-discovery, creating intention, uncovering motivations – asking the hard questions of what really matters. The outcomes will be different for every family.
  • There are many heart-warming and inspirational stories in the media, online, other memoirs. Overcoming odds, disabilities. Even miracles. No one I know experiences life this way. Ian Brown’s book “Boy in the Moon” is a good example of an alternate voice. I wanted to do the same – add another perspective.
  • The system is a well-oiled machine with many moving parts. Parents with disabled children are, by comparison, naïve and inexperienced. It’s easy to adopt the prevailing perspectives. It’s important to maintain agency and intentional choice.
  • Efforts to support a child are certainly an expression of love, but they are not a measure of love. Parents don’t have to prove anything. We all understand the depth of love a parent has for a child.
  • No one else is better positioned to make decisions on behalf of your child. Take the responsibility seriously, make decisions with intention.
  • Be flexible, agile, become a skeptic.
  • My message is not about individual therapies or interventions or specific decisions – it’s about what perspective you bring and the way you regard your child. To honour their humanity, meet them where they are.
  • Protect childhood.
  • We are critical of parents who overschedule or over-parent their children. Why doesn’t this apply to disability as well? We are praised for overworking and it is assumed this is required.
  • No wonder parents can be distraught when they learn their child is going to have a disability. Not surprising physicians might counsel a family to consider terminating a pregnancy – it is assumed to be a grueling life full of disappointments. I suggest it doesn’t have to be.
  • Imagine being on the receiving end of this amount of effort and work. Imagine being a child with no real awareness that there is something wrong with you, and being taken to appointment after appointment, made to work, perform, take off your clothes, pushed through your tears, assessed, monitored, tracked—then experiencing the angst and tears and worry of your parents. I wonder how that must feel.