As a high functioning brain injury survivor, I often get told by new people I meet, “I would never have known, you must have come such a long way.” This is meant as a compliment, and I take it as such, but it also reminds me how it’s difficult to convey to people how living with an invisible disability affects my daily life. I believe society does try to understand people better now. Take dyslexia, for example. In years gone by, people with dyslexia were written off as slow and weren’t expected to achieve much as a result. However, now we understand that it does not affect their intelligence and with a little extra time and support, they can realise their full potential. We know that reading and writing might be more challenging for them, but they still have excellent skills to take them on to great things. I really wish there were a way that we could instigate this kind of change for brain injury survivors.
Are labels our friend or foe?
I’ve never been a fan of labels as they tend to encourage us to pigeonhole people. Nevertheless, they do help the public have more of an insight into a subject, even if it’s only in a generalised way. Perhaps the term “brain injury” is just too vast and encompassing for us to be able to educate the public as to what they can reasonably expect of us and the adjustments that can help us. Even when you break it down to some of the common symptoms, such as aphasia, these aren’t phrases that most people properly understand. There are people in the chronic illness community, like me, who are trying to shine a light on this type of vocabulary, but in reality, the only people who read what we are saying are those who have an invested interest in the subject; other patients, their families and the medical professionals who deal with us. That’s not to say the public don’t care; I think that they do. But everyone has busy lives full of other responsibilities which they need to focus on. There are umpteen subjects out there that I don’t understand or even know exist, so I’m unlikely to be able to educate myself on them. But if there is a label that summarises the issue, I am more likely to be able to digest and retain its message.
The term concussion is out of vogue, but should we be making new terms to help the public understand?
As concussions have been downplayed for so long, the brain injury community doesn’t like to use it as it conjures up the outdated idea that everything will be fine in a day or two. But people did understand that a person with a concussion can be confused, not recognise people and places, and suffer from amnesia. Of course, I know it’s much more than that, but at least that’s a starting point. I agree that we probably do need to move away from concussion because the idea that it’s so short term is too deeply ingrained, but instead of just putting everything under “brain injury”, maybe we should be breaking it down more in order to raise awareness.
Using dyslexia as an example again, did you know the term has been around for 130 years? But it wasn’t until 1987 that the UK government formally acknowledged the condition. As a child of the ’80s, I heard the term a lot and accepted how it affected my peers better than the previous generation. Young people are more open to new ideas and don’t have the prejudices that older adults have. Perhaps that’s what we need to put more of our efforts into, engaging young people to bring change for us through better understanding. I’m not sure what terms to break brain injury down to focus on and make it easier to grasp, but perhaps as a community, we can brainstorm some ideas and together create the building blocks for a better future for brain injury survivors.
What do you think of this idea? Do you have any suggestions?
Nothing in this blog should be taken as providing medical advice or recommendations. Please always consult your doctor for medical advice and before taking any medication or supplement. Any opinions expressed in this article are of the author and not CFG Law Limited.