J, a Member of Headway East London was telling me about the strains of the run up to Christmas at home. My wife said, “You’re not the same person!”

I said, “I know I’m not the same person! I wish I was, but I’m not.”

Headway East London was lucky enough to have been visited a few years ago by the late American academic, Mark Ylvisaker. He had a long-term interest in identity after brain injury, and a brain injury himself, adding a more personal edge.

He, and colleagues, Jacobs and Feeney, commented that personality changes were “common after brain injury”, and “have often been judged by family, friends, employers and others to be the most problematic consequences of the injury” (2003).

They acknowledged the complexity of this, identifying contributors to such change as due to “deficits specifically due to the injury”, (e.g.fronto-limbic behaviour syndromes, affecting motivation, causing disinhibition), “issues with adaptation”, and “post injury reactions”.

They acknowledge that each individual is different, making “long-term prediction of psycho-social adjustment difficult to predict.” Many people with brain injury are recognised by them as “achieving social integration” – through “their effort and natural resilience”, and from “the understanding and accommodation of everyday people in their social environment.”

In contrast, Ylvisaker and colleagues describe others as experiencing a “systematic downward social spiral”, as “social, academic and vocational failures create negative reactions, which, in turn, exacerbate the challenges tied directly to the injury and intensify their social, academic and vocational failures.”

As well as identifying what can happen for people post brain injury, they have researched into ways of maximising positive adjustment through “positive supports”. These include models of ‘apprenticeship’, and ‘collaboration’, where people are supported to contribute whatever they can; taking part in meaningful projects in everyday contexts (work, leisure, interaction).

These ideas reflect Headway East London’s fundamental belief in peer support, community and coproduction: everyone’s skills recognised, valued and used. Headway projects allow people to contribute as much as they can, with the support of others, and to share the successes. This might mean chopping carrots for soup-making in Lunch Club, or taking responsibility for taking orders and distributing it round the community, building a pizza oven, or making cards and necklaces to be sold by other Members at Spitalfields Market.

Expertise - Members' experiences of how to cope with brain injury, are shared with the wider community: through training workshops for professionals run at Headway House, through film-making with the Cognitive Motive project and through a new oral history project collating these experiences and exploring themes such as urban survival.

At the ‘Who Are You Now?’ Conference in February, Headway Members will be talking about issues of identity, and about using their skills and developing roles. You can read more about what Ylvisaker and his colleagues have to say about identity after brain injury in the following article:

Ylvisaker M, Jacobs H, and Feeney T (2003), Positive Supports for People Who Experience Behavioural and Cognitive Disability After Brain Injury. Journal of Head Trauma Rehabilitation 2003 Vol. 18, No.1, pp7-32.

Amanda D'Souza, Headway East London