Fraser versus Honneth

“There’s a lot to get your head round yourself... let alone explaining it to other people” (John)

TBI was a significant, life-changing incident which resulted in transformed identity and increased challenges. The one-off event of the WCA was situated amidst an ongoing process of rehabilitation and learning about limitations. Assessors were seen as insufficiently qualified to assess functional ability within the complexity of the situation, as well as lacking the

inclination to form a connection and truly listen to participants’ experiences.

Throughout their narratives, participants focused on interactions with others and how these others understood or misunderstood their brain injury. For some participants, you needed to be an expert in order to understand the effects of TBI; this might be an expert by experience or a professional specialising in brain injury: “I think... unless you know about

brain injury I didn’t know... anything really about the- the brain” (Mark). Generally, others

were presented as having no interest or understanding regarding TBI, with assessors falling into this category: “a few things that he said... we knew then that he had no experience of head injury” (Peter). Nonetheless, exceptions to this rule appeared, as participants described unique individuals in their lives who somehow understood: “She knew that I was different... and she knew that there must be a- something fairly big going on that had caused... the difference” (Claire).

The stability of constructed identity differed depending on the stage of rehabilitation. John was living an ongoing process of gaining insight into the effects of his TBI and making sense of what that meant in terms of identity. He variably presented himself as someone with a head injury who needed support versus someone who was able and wanting to prove himself: “One of the sad things is I don’t recognise it... if I feel ok on the day”. Amidst anger

at being misunderstood, he described how he would push himself to complete tasks, and that it might be impossible for an assessor to realise the extent of his struggles: “I’ve got to hold my hand up and say it’s probably me own fault for saying ‘Oh yeh... I can do that’”.

Alternatively, there were healthcare professionals who supported him to see beyond his “good day” and consider the “cost” of pushing himself: “She [neuropsychologist] says... ‘If you do

something on one day... you’ll er hammer away at it and do it... but you’ll pay for it for the next three days... you’re tired... you’re grumpy... you’re forgetful’”. John reflected on the fact

that if assessors asked more exploratory questions, they too might gain an understanding: “‘What happens after doing that?’... that’s the important key question”. However, his relationships with known healthcare professionals were ones of trust and assessors would need to work with him to establish a real connection.

In contrast, Peter was 20 years post-injury; the lasting effects of TBI had become a fact of life and a more stable part of his identity. He was more likely to overlook his life

previously than to dismiss his brain injury: “I’ve never paid a bill in my life... well since my accident... I used to do all the bills”. For Peter, this meant there was no means of justifying the assessor’s view of his TBI, other than them lacking in knowledge and inclination to

understand: “Assumptions again... there were a lot of assumptions”. Having worked hard to incorporate compensatory strategies, he was frustrated when he was seen as being able to complete tasks with ease. Like John, he felt that assessors could resolve this by asking the right kind of questions: “I don’t even think that was asked... ‘how do you remember?’”.

Overall, participants saw assessors as neglecting the complexity of their situation, seeing TBI as an event rather than an ongoing process of rehabilitation with fluctuating presentation. The hidden effort needed to complete tasks, the sustainability of effort, and the costs of effort all needed to be considered. The role of insight was highlighted, in its potential to contribute to misunderstanding, as well as the ongoing importance of hope and maintaining a positive outlook. Assessors needed to have empathy to understand the difficulty in

acknowledging and explaining one’s difficulties: “Thinking about your worst day... if you are feeling good and stuff... that can put you down” (Mark). Superficial cognitive assessments were also criticised, particularly when in-depth assessments had been carried out by known healthcare professionals and made available: “Asking me just typical questions erm... he asked me to... repeat what he was saying and all that” (Dominik). Participants wanted assessors to abandon a generic process in favour of real dialogue: “You stick it in the machine... is it a yes or is it a no... type thing”; “Start a conversation maybe” (Michelle).

Where narratives had an overall or partially optimistic tone, it tended to be because they culminated with the person with TBI overcoming adversity and finally feeling heard: “I broke

down crying... it was- it was a relief to hear... someone at last... see what they had in front of them” (Carl). The key message here was that no amount of explanation or written evidence

would result in the right outcome, unless the receiver was prepared to genuinely open themselves up to it.