Story-Telling
There is a second thing that you do which I applaud, and that is that you tell interesting stories about people with disability.
You tell stories informally at the dinner table, on walks, formally in meetings and in your prayer services, and I know that many of you also tell stories to your family and friends outside of L’Arche in letters and emails home, or when you talk to them about how your experience is changing you. Your stories are especially potent because they are about particular people and they tell both sides.
You tell a story about Peter Helleiner, not about people with Down’s. L’Arche is not about commanding people to like ‘the disabled’ – it is about creating fertile ground for individual hearts to meet and learn to recognize each other’s beauty amidst the detritus of all-too-common human judgements.
Rabbi Jonathan Sacks’ reflections on unity and peace echo this emphasis on particular people:
there is no road to general human solidarity that does not begin with moral particularity and loving specific human beings … there is no short-cut.
But here’s my concern … I fear that most of you limit your story-telling to a tight circle – primarily with your friends in L’Arche and maybe a select few outside. This is not surprising – no doubt everyone in this room has experienced the look of bafflement or worse, disinterest from outsiders when you have tried to explain a special moment you had with one of the core members.
It is very difficult to find the language or metaphors to share these stories with people who do not have much experience with people with developmental impairments. Scholars like Wittgenstein and Rorty have bemoaned the inadequacy of language to capture the fullness of experience for a very long time so this problem is neither new nor unique to L’Arche.
But the problem is perhaps exacerbated for you in that due to segregation of people with impairments in our society, many people in the public literally have no reference point, or no direct experiences that would help them to relate to your story. Hortense is even developing a mini-dictionary of L’Arche vocabulary and alternatives to it for use in outside communications!
Let me be very clear why this concerns me: The public NEEDS your stories. People with developmental impairments who can not represent themselves in words NEED you to tell your stories about living with them.
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| Antoine Favreau - L'Arche à Pari |
There is a dishearteningly small pool of positive cultural scripts out there about people with disabilities.
If there are not good stories out there, how can we be surprised that the public imagination is so negative? Stories that do exist often idealize or romanticize the person so they are not seen as credible.
By ‘positive’ stories, I do not mean to imply that your stories should be all happy and upbeat – that kind of one-dimensional representation is not helpful. Your stories can have a powerful influence on the public imagination precisely because they are polyvalent – they have many sides and range across diverse emotions.
I have heard assistants tell stories that bring people to tears because they are so genuine - they blend acknowledging the hardships that the impairment entails with other elements like the hope that can still show forth, or the way that others can aggravate those hardships through exclusionary acts, or with humour at life’s complexity.
Assistants often told me that their most powerful moments of personal growth came with a core member with whom their only connection was mutual frustration! But almost all of your stories convey an image of core members as real, complex people just like everyone else.
There are people in this room who are doing this and who you can draw on for assistance – Sue M’s books have always portrayed people in both hopeful and practical terms. Beth’s book on social inclusion best practices has been incredibly popular in and outside of L’Arche. Clara, Nathan, Joe E. and others have worked hard at outreach to outside audiences or schools. Carl’s personal Christmas letters to friends even do this. So you have great role models here.
The world really does need you to share these stories, because not everyone believes that the lives of the disable have value. Louis Harris has done surveys of public attitudes several times in the last 2 decades and the findings are sad if not surprising: æ of the public said that they feel “pity” or “charitable” towards people with disabilities and almost half said they feel “fear” and “discomfort,” and that is not occasionally … that is something they feel “all or most of the time!” There are many other figures in their reports you could read that highlight the pervasive nature of the problem of attitudes (see also Makas).
I’ll share two other examples of what I call the failure of imagination in relation to disability.
In the early 20th century asylums in Canada, we find reports saying that in order to cut costs, the asylums could suspend heating to a minimum and not bother with any decoration at all; no visits to or from an ‘inmate’s’ family as that too was costly and bothersome for staff; involuntary sterilization because others deemed that ‘they should not breed’.
One of the most striking things I’ve learned is that in an asylum in Orillia, just north of Richmond Hill, hundreds of ‘inmates’ were buried with no gravestone. Stop to think about what went through the imagination of these staff … or perhaps what did not enter their imagination. They seemed to be unable to imagine their wards as fellow humans – as deserving of the basic dignity of a named gravestone, however simple. This is a clear example of the failure of imagination.
Today we have an emerging trend towards what some have called neo-eugenics. I know you had Dr. Hall here recently to speak about these matters so I will be brief.
Eugenics developed around the turn of the century in conjunction with the invention of statistics, the idea of ‘normalcy’ and the standardization of labour in industrialization (see Lennard Davis for more). The aim ofEugenics was to have the ‘best’ population possible – it was an interventionist model that was state-designed and used coercion and control over reproduction through things like involuntary sterilization of those deemed unfit to breed.
Today genetic screening and selective abortion accomplish virtually the same kinds of aims, but the means is quite different – not just technologically (now we have genetics and amniocentesis) but also in terms of the decision-maker … the decision of whether to have tests or to abort is entirely up to parents now.
While some research shows that the medical professionals tend to paint a very negative picture of the effects of fetal anomalies, it is ultimately the parents who decide not the state or doctors. And the outcomes of this freedom are frighteningly consistent … in all developed countries, selective abortion (due to fetal anomalies) is rising dramatically and the birth of babies with detectable developmental impairments is plummeting. The medical profession is mandated to ‘decrease suffering’ and there seems to be broad, if tacit consensus among them that preventing disabled babies from coming to term, that is a step forward in reducing suffering.
Given the research that shows the large extent to which disabled people’s suffering comes from socio-cultural discrimination however, is this an appropriate solution? Or is it another failure of imagination – on the part of the doctors and genetic counselors, or the parents who are confused, disappointed and scared? At the very least, it seems like more could be done to create a balanced picture for parents facing such a decision. Again, this is where your stories could play a role.
This week-end I want to talk about imagination because it is a strong suit for L’Arche assistants and the general public seems to seriously lack imaginative ability when it comes to developmental impairments.
 The lived experience and socio-cultural context of L’Arche communities has always been effective in expanding the way that assistants are able to imagine disability. Some might argue that this is a biased ‘sample’ since you have chosen to come to live here.
You may be an unusual sample in some ways, but my research showed that less than a quarter of assistants who came had prior experience or relationships with people with disabilities, and only about a third indicated that disability was of particular interest to them.
To me, this suggests that the positive transformation in how you imagine disability in all its complexity, is effective regardless of initial motives.
It is is a more important finding that it might seem at first blush. Some might say – well of course they were able to see disability in more positive ways – they got to meet individuals one on one. In sociology, this is what is known as the ‘contact hypothesis’… It was popularized in the US during the period of desegregation of whites and blacks. The hypothesis was that if you could just get people of different races to interact – to come into contact, then racism would diminish. After years of studying many such ‘integrated’ settings, researchers concluded that, not surprisingly, things are not that simple.
In fact they found that if no new information or positive representation or understanding was provided, such contacts were most likely to simply reconfirm a person’s prejudices and could even increase racism.
With appropriate intervention, education and supports however, they argued that you could see some improvement. I think that this is part of what you do in L’Arche – you have built up an alternative philosophy and spirituality that provides those shifting resources.
Many assistants talked to me about how they experienced this kind of blossoming of their imaginations about disability but what is exciting is that it does not stop here … many of you seem to carry this imaginative toolbox with you in your lives outside or beyond L’Arche as well.
In the next talk, we’ll continue to explore how L’Arche has helped you develop beyond your imaginations.
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