That is a formulation that fits well with the social model of disability which many of you now know. Furthermore, in ethnography, those who specialize in violence argue that imagination must precede action; that actors first imagine what they will do and why, in order to legitimize and plan their act(s) (Schmidt & Schroeder 2001).

In the field of disability & genetic screening, parents not surprisingly report that deep moral and religious reflection is needed to clarify their beliefs and outcomes in their imaginations prior to deciding whether to act on amniocentesis results (Rapp & Ginsburg 1991).

There is further implication of some eventual action in another definition of imagination as “the ability to create and rehearse possible situations … different approaches to a problem” (Blackburn 1996).

Imagination is part of how we undertake world-making, and as such, it mediates between our goals, actions and the meanings that we come up with. Some suggest that liberal society does not the have the moral or religious framework to protect people with developmental disability from emerging medical interventions that threaten to prevent their birth.

What I find most concerning about this, is that it is my impression that there are few disability-positive cultural narratives in play that the non-disabled public could draw on to rebuild such a framework to appreciate the value of a disabled presence, even if they had the incentive or desire to do so.

If the public lacks these affirmative lenses through which to imagine or act, it seems naive to expect them to genuinely engage with people with disabilities in public settings, much less be prepared to welcome them into their family upon prenatal diagnosis.

A final point about the imagination addresses its origins – what does it source from?

The imagination is endowed through examples as well as the lenses through which we interpret those examples. The examples can be personal experiences or they can come from stories and images that we take in. Imagination is not merely made-up fiction; it is rooted in your life experiences. Imagination draws on the landscape of your habits, awareness and relations – influenced by the things you learn, do, or undergo, and populated by people you know.

Applied philosophers came up with six steps in the moral imagination process in thinking about character development. The steps move from creative thinking about problems and goals to developing and assessing alternative strategies and planning how to realize a solution (Lipman et al. 1980). Clearly if you are aware of alternative interpretations, this enhances your capacity to imagine disability in new ways and ideally leads towards transformed practices. You might compare this to progress made by feminists or civil rights activists in relation to transforming people’s ability to imagine blacks and women in entirely new ways.

For Assistants in L’Arche, your experience is illustrative because you do get this chance to enact the alternatives they learn about in L’Arche training or in Jean’s books. Through life-sharing you also have ample exposure to diverse people with disability and you can observe experienced assistants’ interactions, you can make mistakes, and you can grow and adjust accordingly.

But where does the general public get its stories for understanding disability?

The general public has a limited pool of positive stories or experiences to draw on to fund their imaginations, and that is why they need you and your stories and imagination and action so much.

The community living movement was based on the assumption that if you returned people with developmental impairments to ‘the community’, the mere fact of their contact with other, non-disabled people, would transform the public’s negative attitudes towards them.

However, the literature based on this principle for race relations in the US and that on disability, both demonstrate the importance of the extent and quality of the contact: the hypothesis only holds when the contact is significant and positive (Makas 1993).

Apparently this is not often the case: in a major US study, fully 58% of non-disabled Americans said they are ‘often’ or ‘occasionally’ ‘awkward or embarrassed’ upon encountering people with disabilities, and 47% experienced ‘fear’ while 74% felt ‘pity’ (Harris 1991, Makas 1993). What this means for you, is that there is a clear opportunity for you to influence the nature of these contact moments for the better with your stories.

Examples of the Moral Imagination & Disability

I’ll briefly outline a few examples of how people’s moral imaginations have set inspiring examples that you could look to. These are brief and I’d be happy to provide further information as requested.

Kenzaburo Oe is a Japanese novelist and Nobel peace prize winner. He is also the father of a son, Hikari, born with a profound brain injury and permanent developmental impairment. His life-long work has been preoccupied with many compelling themes that he works out through two main subject areas: Hiroshima and the anti-nuclear movement in Japan, and the personal and fantasized experience of being a father of such a son. He finds intriguing intersections between these two.

His personal narratives in particular are neither romantic nor martyr like, nor are they overly frank or overly preachy. He has a gift like Jean to share a story in a way that allows a lot of room for the reader to bring their own selves into the space as well.

In a very genuine way, he seems to have found a path around the ‘problem of language’ that so many of us struggle with in talking about our friends with developmental disabilities to people who do not know them and do not especially want to know them.

His honesty about his own failings is reminiscent of the L’Arche acknowledgement of human fragility. I think in Oe’s work you would find an interesting prototype for sharing your own experiences.

Ian Brown is a Toronto based journalist and father of a son, Walker, with a rare and serious developmental impairment. In a recent series in the Globe and Mail, Ian manages to recount the ups and downs, the exhausting frustrations and the personal joys that Walker has occasioned on him and their family.

In a recent series in the Globe and Mail, Ian manages to recount the ups and downs, the exhausting frustrations and the personal joys that Walker has occasioned on him and their family.

Again, Ian comes across in a very human way –as just like us - alongside his obvious literary talent. He appears to be as sarcastic and confused as he is hopeful, loving and patient and it is precisely because of this full self that he shares with us, that we the readers afford him such credibility to tell us this story.

He confesses to feeling selfish for not wanting to be a 24 caregiver for his son indefinitely… he writes that it is physically impossible to continue to care for Walker at home, but emotionally impossible for he and his wife to imagine allowing him to live anywhere else.

To me this succinctly and eloquently captures the inherent paradox in trying to tell these stories – how do you admit the hardship that makes you want to scream, without canceling out the love and genuine mutuality? I encourage all of you to go to the Globe and Mail to review his engaging series of articles and videos.

He writes of many themes that Jean and you all try to live; for instance in how relieved he and his wife were the first time someone just accepted Walker as he was – didn’t try to suggest ways to ‘fix him’. I know that in collaboration with your fellow community members, you could write this kind of story too. But your version would be different: a parent is allowed a certain language of love that is not necessarily accessible to caregivers for their stories, even if they feel it, so this needs to be take into account.

Another option is to think about inviting talented and sympathetic writers like Ian Brown or film-makers into your fold: to find people to assist you and the core members to tell these stories.

Un dernier exemple est celui d’Alia et son récent décès. Je ne connaissais pas très bien Alia mais on m’a beauccoup parlé de comment elle a influencé et enseigné à plusieurs d’entre vous et à quel point ses funérailles et son deuil furent émouvants.

A final example is that of Alia and her recent passing. I did not know Alia very well but I have heard so much about the ways in which she influenced and taught many of you and about how moving her funeral and wake have been for you. So one exercise that you might undertake together is to consider: What really caught your imagination through her life or her funeral? What bits of human insight or knowledge did you take away from knowing her or listening to others’ stories. Then ask how you might articulate that in a form that people outside of L’Arche could appreciate.