Living on the edge

Living on the edge: Reflections on Rethinking LD seminar 2

Jennifer Clegg, University of Nottingham

As well as what people said there was how they were. Inform Theatre made an entrance in every sense: energy, good nature and confidence poured into the room as they found their space and occupied it. Their positivity was sustained throughout the day up to the final sketch, when all of us became caught up in their dancing and singing.

Garvald entered just as warmly though less exuberantly: making rather than performing requires a quieter approach. As we got to know each other, what became clear was that both Inform Theatre and Garvald are ethical collectives: groups oriented to the affirmative, and to ways of being that enable individuals to flourish. In one way or another, members of both groups mentioned solidarity as a shared value. It was expressed in talk about the importance of getting on with peers a well as staff, and demonstrated in their actions. For example, there was sensitivity to one person’s need for space with nobody bolstering themselves by belittling her, and friends being ready to connect when she relaxed and opened up. There was also a sketch that acknowledged difference and showed how to develop a creative response to it. This explored a range fo ways to group people until one approach left a wheelchair-using member alone. An actor noticed her isolation and invited the group to think together how they might change this unacceptable outcome. That prompted creation of a new way to organise themselves which could transcend chair and fold her back into the group.

The seminar expressed and explored an affirmative ethics that does not fall into the facile positivity often found in LD. Members of Garvald and Inform Theatre are unusual in being able to talk of solidarity and friendship: many take the risk of saying ‘I like you’ to people they meet. This embrace of joyfully connected living does not deny sadness or difficulty. Pain and loss were mentioned, but without people being overwhelmed by them. Members acknowledged the uncertainty of human relationships: the hesitations that accompany reaching towards connection.

So we saw how things can be – but this is not usually how they are. Thirty years ago hospital ‘patients’ claimed not to know the name of the person who had slept next to them for 5 years although they could, of course, name staff. This blanking of peers was attributed to institutionalisation. However, most people who moved into small group homes also claimed not to know the names of those they lived with; now few people in supported living tenancies can name others in their house. Some think stigma is responsible: members of marginal groups adopt the prevailing culture to devalue one another.

A growing number of thinkers and researchers believe that there may be something important underpinning this lack of connection between people who have LD. When emphasis is placed on each person’s right to have what they choose peers become competitors for the help that they require to live as they want, not potential friends. Thus the cultural value system that places such emphasis on rights, autonomy and choice is itself the hindrance to a more connected way of life. This value system, liberal individualism, holds a central role in Anglo-American societies.

Braidotti (2012) argues that “the dominant ethos of our conservative times idolises the new as a consumerist trend, while thundering against those who believe in social change.” (p195). Rights, choice and autonomy are such taken-for-granted values in LD that any questioning of them tends to elicit a negative judgement. When considering how to build ethical relationships Reinders (2000) turned away from liberal values, on the grounds that rights open doors but not hearts. Alternatives to liberal individualism are often depicted as the wrong ideas espoused by wrong-headed people, yet the number of writers who are convinced of the need for alternatives is growing (Deleuze, 1995;  Burton & Kagan, 2006; Cumella, 2008; Murphy, Clegg & Almack 2011). There are often fears of a return to past paternalism, or of a sink into moral relativism, butt that is not what is being said.

What struck me during Rethinking LD2 was that we were experiencing what Braidotti (2012) has called zoe: a creative, generative force that constructs new possible futures. It is an expression of Deleuzean nomadic ethics. While Scottish policy is grounded on an ethos of ‘the same as you’, nomadic ethics seeks not to recognise sameness but to make creative relationships with difference. Nomadic ethics promotes a triple shift in the assumptions we make about a good life.

  1. Away from individual achievements towards enduring relationships.
  2. Away from moral rules (for example ‘helping others is patronising, empowerment is the higher good’) to practical action (finding a way to express solidarity that honours rather than diminishes the person).
  3. Away from negative judgement towards affirmative processes and lives.

Nomadic ethics has a forward orientation: concerned not with what we should have nor who we are now, but rather with who we might become. Such creative living is by definition unstable: living on the edge. While it can be energising and joyful, too much energy and change is destructive. So the ethic of becoming is only possible when people are emotionally contained, nested within sets of relationships that are part of a well-functioning collective. Such collectives are characterised by concern to acknowledge pain and loss in order to transform it into an affirmative way of living. Interdependence rather than independence is essential, and being faithful to relationships over time is fundamental.

That is why I focussed on what people said being less important than how they were. The challenge is whether the joyful relating we observed and experienced in Rethinking LD2 can cease to be a rare achievement. Living positively on the edge needs to become available to many more people with LD, but it needs a radical rethink to get there. Are we brave enough to take that on?

References

Braidotti, R. (2012) Nomadic ethics. In D.W.Smith & H. Somers-Hall (eds). The Cambridge Companion to Deleuze, pp170-197. Cambridge University Press: Cambridge.

Burton, M. & Kagan, C. (2006). Decoding Valuing People. Disability & Society, 21, 299-313.

Cumella, S. (2008) New Public Management and public services for people with intellectual disability. Journal Policy & Practice Intellectual Disability , 5, 178-186.

Deleuze, G. (1995). Negotiations. (trans M. Joughin). New York: Columbia University Press.

Murphy, E. Clegg, J. & Almack, K. (2011). Constructing adulthood in discussions about the futures of young people with moderate-profound intellectual disabilities. Jnl Applied Research in Intellectual Disability, 24, 61-73.

Reinders, H. (2000). The Future of the Disabled in Liberal Society:  An ethical analysis.  University of Notre Dame Press, Indiana.

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