Blog: Surviving traumatic brain injuries
Published: 20 Jul 2018
At the time of my Churchill Fellowship in 2009 I had been working with survivors of brain injury for five years, on a steep learning curve about the issues that affected them – from the neurological disabilities caused by their injuries, to the often equally disabling problems relating to housing, unemployment and poverty inflicted on them by an inflexible work culture and an underfunded social care system.
Travelling to the USA to visit brain injury rehabilitation programmes gave me a new perspective on what my own organisation, Headway East London, could and should do for its client group back in the UK.
I saw the distinct contrast between programmes based on the medical model and those that took a social – or radical - model of disability more seriously. The first kind, based in the hospitals of New York City, identified brain injury as a pathology and guided survivors through rigorous therapy programmes in the hope of returning them to their former roles and identities. The second, based in rented venues in the towns and suburbs of Virginia Sate, accepted disability as an outcome that might not be reversible, focussing instead on what could be gained through the pursuit of new roles and through social, cultural and creative endeavours.
Since I completed my travels, the UK has made great strides in awareness-raising about the effects of neuro-degenerative conditions such as dementia. Sadly however, in most other respects the situation remains largely unchanged for people with neurological conditions – with austerity politics and wider cultural stigma creating significant disadvantage for many of the country’s most vulnerable people and putting intolerable pressure on carers and families.
In 2016 I helped manage a life-writing project aimed at helping brain injury survivors tell their stories to a wider audience. You can read these stories on a website called Who Are You Now?
This year my book, Tell Me the Planets, was published by Penguin books. In it, I tell the stories of a handful of people I’ve known over the last fifteen years – people who’ve survived profound and life-changing injuries but lost none of their spirit or determination. My hope is that, by witnessing the lives of these extraordinary people, I can help other see the value they have to offer, and how so much can be learned from their experiences.