Brain Injury Awareness Week: Survivors are already aware of difference, it’s time for everyone else to catch up

This week marks Brain Injury Awareness Week in the UK. In the neurorehabilitation service I work in we’ll be celebrating with a range of brain-related activities. We’ll be watching injury related films such as The Crash Reel, having a quiz and getting crafty with brain-themed cake decoration. We’ll be promoting the importance of looking after your brain – wearing a helmet, eating well and taking time to relax. Whilst it’s appropriate for us to throw these events, I can’t help but feel that are energy can be somewhat misplaced. Brain Injury Survivors aren’t the one’s who need their awareness raised. They live with disability and difference every day. Though some have difficulty fully understanding their injuries, they are experts in their own experience. The problem relates more to everyone else, the vast swathes of the population who have little understanding of brain injury and limit the social inclusion of survivors in their ignorance.

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Brain cake – delicious but perhaps not really raising awareness about the experience of brain injury

On the whole general knowledge about the brain isn’t high. It is after all, a highly complex organ that even expert neuroscientists don’t fully understand. Myths about the brain abound, ideas about “left and right brain thinkers” and the percentage of our brain we use haven’t been especially helpful. Understanding the brain requires looking at who we are as people, what makes us human, when makes up our identity, and how much control we truly have over our behaviour. This is what makes the brain fascinating, but it’s a difficult topic to confront. And then extrapolating from the delicate, blancmange like organ to understanding why it is that a survivor might suddenly get angry for no obviously observable reason, struggle to manage bills, become exhausted and overwhelmed, or any one of the many common consequences of brain injury.

Campaigns designed to reduce the incidence of brain injury do have their place. But what of the thousands of people already living with an injury?  Brain injury can have many physical effects that are very outwardly visible but sometimes it’s the other changes (which may relate to language, cognition and emotional expression) that seem the hardest for others to grasp. They understand a wheelchair or a walking frame, but they’ll make faces when they have to wait as an adult struggles to slowly pay for their shopping. Many of my service-users do not look ‘”disabled”. They have no visible injuries and can walk. What others don’t see is the myriad of “hidden disabilities”. The difficulties in planning and judgement that may leave them unable to sequence ordinary daily tasks such as washing and dressing. The difficulties in reading social cues and inhibition that place strain on their closest relationships and lead to exclusion and isolation. The difficulties in concentration, slowed processing speed and post-injury fatigue that can make everyday tasks like shopping and cooking completely exhausting. The difficulties in motivation and initiation that require repeated prompting and encouragement to prevent survivors from becoming completely inactive and neglecting themselves.

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Credit – Headway

I get to see the consequences of this misunderstanding. Individuals with dysarthria (slurred speech caused by changes to the control of vocal muscles) refused service on the bus because others believed them to be drunk. Those accosted and tutted at when they use disabled parking bays, having the audacity to look able-bodied. Individuals labelled “lazy” or “difficult” when they have executive functioning issues related to frontal lobe injury. One service-user with very flat affect post-injury (they show little facial expression) was turned down from a voluntary work placement because of their perceived lack of “enthusiasm”.

This kind of prejudice and lack of understanding is not unique to those with a brain injury, it applies to all other forms of “invisible disability”. This may include conditions that effect cognition, such as learning disability and dementia, as well as health conditions such as ME, Ehlers Danlos and chronic pain. The individual may “look fine” but have difficulties that severely limit their lives, restricting their ability to be fully independent or to work. As a society we seem to have a preconceived notion of what sickness of disability look like, and when we see someone who does not conform to this, is having difficulty or using support designed for those with disabilities, the tendency seems to be to draw negative assumptions. We ascribe their difficulty to personal characteristics – they’re lazy, stupid, selfish and taking advantage. We judge others as undeserving, as if we deserve “proof” of their need for assistance and are entitled to know what is wrong.

When we see someone struggling and we see no obvious evidence for their difficulty, why is it so common to judge negatively rather than to be curious and compassionate about that person’s situation? It is admirable for people with disabilities to take it on themselves to correct and educate others, but they are not required to do so. Instead it is for us to challenge our own preconceptions and seek to inform ourselves.

If you are interested in gaining a better understanding of brain injury here are a few good sources of information:

Headway

Brain and Spine Foundation

Stroke Association

Documentary – My New Brain

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