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.
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.