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.
________________________
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.
Hey Jen – I haven’t had a chance to process this post, which looks very interesting.
Re our discussion — I don’t want to change how we define success so that people with disabilities ‘don’t get left out.’ That suggests that really they have no value and I want to change the definition to somehow ‘grandfather’ them in. The point is that every life has value and should be recognized as such, and I think the only way to do that is to broaden what our culture thinks about (open their eyes!) when they think of a happy, rich life. Tell our stories! I am sure that your perception of disability was vastly different before Owen was born to the real experience of it. Mine with Ben certainly was.
I don’t feel we can ‘do our own thing and forget the rest’ when it means most people in the culture will continue to stigmatize people with disabilities (and you only have to look at the studies showing that doctors and nurses rate quality of life in people with disabilities as very poor when the people themselves rate their satisfaction with life as good to excellent — and how that can play out in care — or withdrawal of care).
It would be like taking a similar approach to racism or gender bias or any other injustice in the world. Forget about it and do your own thing?
I agree about how the most crucial thing is our own acceptance — of our kids and ourselves (sorry, I read a little further). But to just be an island — I’m not sure how that will make anything better for our kids and families in the future?
Will come back to read your post properly this weekend.
Thanks for writing!
@Louise – hey again! Thanks for engaging with this… and for clarifying our conversation. I’ve added a note above to make sure your comments are highlighted.
I guess where we split from the same stem is that I’m interested in talking directly to people – parents and clinicians alike – who relate to the uneasiness I have felt, and thinking out loud about things they can do individually to move through the minefield of childhood disability. So many noises and voices and opinions and assumptions and projections – there’s no room to do what needs to be done and change the world too! How does one find their way? How do you make decisions, set priorities, listen to your inner voice if you think something is off? How does a parent figure out what really is best for their child and themselves? That’s the angle I’m interested in exploring, not in shifting how the rest of the world thinks about people with disabilities. Although that sure would be nice.
I think, Jennifer, that perhaps the most powerful force to shift how the rest of the world thinks about disabilities is for us to be secure and focussed on what is best for our children and families.
I know I have said this before, but meeting you really strengthened my convictions that I know what is best for my child. My expectation is that people who work with her will share my conviction, or leave her care. Everything else then falls into place.
Hi Jennifer,
Susan expressed to me that you were interested in knowing if people were reading
“the book”. Reading? We have inhaled it. For parts of it we laughed; for most of it we cried. “The book” has solicited a barrage of conversation, discussion and debate. Your ability to tell Owen’s story has allowed us to begin to speak the words that are secretly hidden the a corner of our hearts. For some, your words have provided an element of freedom that helps us to better understand the beautiful children and families we work with. I am sure I speak for all of us when I say we look forward to meeting you at Silver Creek.
Hi Lois – I’m really looking forward to coming and meeting everyone, and especially participating in what I’m sure will be interesting dialogue :) See you soon!
There are a few different reactions that I have consistently received for over 13 years from the dozens of physicians I’ve consulted which to my mind go back to basic issues of psychology seen in other situations as well. One is, ‘yeah whatever’, the moment I am not wagging my tail in enthusiasm at whatever it is they have in mind. Fortunately due to medical training and a firm belief in my intuition I’ve been able to prevent serious damage in a number of such cases. Other times I haven’t had the control, even to the point of a life threatening episode being the result of physician’s negligence. A child like my son, so medically fragile, invites catastrophe but vigilance is as absent as apathy is present.
In the more mundane, parental decisions must necessarily collide with professional advice for two very different reasons. One is the lack of experience on the professionals’ side, but this is understandable to some degree because of the diversity of physical and mental compromise in our children. The other is that parent’s ‘hope’ for their children will always factor in and collide with what is possible. Any time a parent approaches a school or institute for therapy they come up against a system which by definition has little flexibility since, as I see it, rehabilitative and assistive therapy, is still in its infancy.
Decisions by parents, who really are looking for reassurance that they are doing the right thing, would take a giant step forward if they were more understanding and accepting of altered expectations together with the proper forum for educating physicians and therapists about the children’s needs.
If physicians had a better understanding of severe disability of children, requiring an active interest, they could help set the tone for the health system and in a wider sense, in society as well. Merely deferring to ‘the professionals’ is not enough and that behaviour stems, I believe, from fear. The fear of appearing unknowledgeable.
Once we except that for the most part we are feeling our way in the dark, together, a wider acceptance can come and a sub culture of parents of severely disabled children will find its footing.
@Eric – glad you got through to the blog!
I agree the disconnect happens on both sides, as you’ve pointed out. Parents need more confidence and skepticism, physicians need more curiosity, wonder and understanding.
You are talking about hope in terms of outcome. I see hope in terms of process. Hope for me comes close to what Valclav Havel wrote: “Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.” This I found to be oh so true in raising and making decisions about our daughter Jessie, where we would make decisions to do something or start something (or end something, like therapy) because of a sense (grounded in our knowledge of her and committment to building community, hence a familiar home for her) that it was the “right” thing to do. Many times the immediate outcome was negative, but the long term impact was significant in ways that we could never have predicted or foreseen. This has happened so many times that I have learned to trust my gut instinct (fashioned, of course, of knowledge of my daughter and a certain committment to the golden rule or love or some such underpining value) and to leave parts of the rest to the universe. This to me is hope. Perhaps.
Nancy – thank you for this insightful comment! Definitions aside, I think the perspective you share is exactly what is needed for many of us.
A thought that just occurred to me: I imagine that Jessie herself also guides or frames much of your decision-making. She is an independent young woman with much to say and contribute. And I am guessing the two of you don’t always agree :) So moving forward with anything requires a huge amount of give and take, as in all relationships – perhaps your own personal ‘hopes’ are kept in check by the will and preferences of your daughter.
In my case, the decisions were all mine with no constructive input or feedback from Owen. If I ‘sensed’ a response from him it was all still imagined by my own brain. I think what I’m saying is that some kinds of hope, if unchecked or unchallenged or unexposed to any kind of friction, can do more damage than good.
Thank you again for your comment!
You are too right about Jessie guiding (sic! grin) us. And that does make it a whole different ballgame. And even when there is speech or some other form of communication we are often such poor listeners (or listen only to our selves, our needs, our unchecked and unquestioned assumptions and expectations) that our garbled translation may be way off the mark. You are so right about that friction and its importance in shaping hope, or in shaping anything. All is in relationship, and some relationships are much more obvious than others. I am intrigued and wonderfully challenged by the questions your raise, and are raised because of your relationship with Owen. still thinking . . .