Our Head of Department and Senior Director, John Knight, is a great Winnie the Pooh fan.  I am not a great one for Pooh, to be honest;  I’m much more for Paddington Bear.  But both books are worth a read as although they are known as children’s books, they do offer some very philosophical insights into the human condition, many of which fit very nicely into Brain Injury Week.

Headway, the brain injury charity and support group for brain injured people and their families (of which John is a trustee for our local group) have as their theme this year “See The Hidden Me”.  https://www.headway.org.uk/

Brain injuries are not always obvious; many of the consequences of brain damage can be very subtle but profound, or not apparent on the surface. This can lead to confusion and mis-communication.

Brain injured people can indeed be hidden, but also we have to remember that leaving the brain injury inside, there is still a person there.   It may not be quite the same person they were before the injury, but we have to get to know the “new” person, learn how to communicate and interact with them, how to explain to others how to do the same.    This might involve literally learning a new language, such as signing if someone has hearing problems as a result of their injury.  We may have to take time and be patient with a brain injured person in communications-they may get there eventually, but can just give up if rushed.  This can lead to them feeling isolated as they feel it’s not worth trying to speak, as no-one has the time to listen.

We should also give them the time and the means to say and do things for themselves.  It can sometimes feel easiest just to fill in the words or finish sentences for a brain injured person.  Similarly with them doing things for themselves.   Yes, it might take half an hour or more to make a cup of coffee.  So-make sure you’ve got that half hour to spare!  Set tasks up to succeed.

Brain injured people can be made to feel stupid because of communication difficulties.  They’re not. They’ve been injured. Parts of their brain that control things like speech, emotion, understanding and abstract concepts have been physically damaged, so they just don’t work properly anymore.  Everyone understands that a broken leg may leave you with a limp. You can see that, it’s obvious, so you know where you are.   A damaged frontal cortex less so.

It also seems more acceptable to be open about visible physical injuries.  We ask “How’s your leg getting on?”.   We talk about it.  We offer help because we can actually see what the injury is and we can see how to help.   Brain injury is not like that-we often can’t see it, so we not only don’t know how to help, we don’t know that any help is needed in the first place.   While we wouldn’t want to appear intrusive or upset anyone,  it is possible to ask about brain injuries in order to understand them.

One of the most frustrating issues for brain injured people must be the “Does he take sugar?” element.

It is too easy to just ignore the person in the wheelchair who can’t function physically because of a brain injury which has damaged their ability to move as well.  Thus we end up addressing their carers or support workers with questions  the brain injured person could  easily deal with themselves if we know the right way to communicate. If you are meeting someone with a brain injury for the first time, you can discreetly and diplomatically ask the best way to deal with practicalities-a phone call to the support worker perhaps.  This is not “prying” – if you knew someone had a broken leg, you wouldn’t mind asking beforehand whether they have a wheelchair, so might need a ramp; whether they will need a lift or whether a room on a ground floor would be best for a meeting.  It’s accepting that there is an injury and wanting to know the best way to address it.

In fact, if you are a support worker or carer, then it may be more practical for you to telephone or email ahead and set out what is needed.

Many babies born with cerebral palsy do still have intact or very good intellects, but can be severely physically impaired.  Given the right support and environment, they can live with a very high level of independence, secure good jobs and go on to have relationships and family lives.  The physical presentation can mask this and it is too easy to assume that physical and mental/intellectual always go together.  They don’t.

Another frustrating issue is that of deafness or other hearing problems. Meningitis, a brain inflammation which can have devastating consequences, often causes deafness very early on before the actual meningitis is diagnosed.  If this happens to a young child, it can be missed and causes development delay if not addressed.

As a child or an adult, deafness can be very isolating.  You get embarrassed having to say “Sorry, I didn’t get that” or “Could you just repeat that for me?” all the time.   In the end, you give up trying to understand.  Worse, the person talking to you, even though they may know you well or be family and KNOW you have a hearing problem, will say something like “It doesn’t matter…it’s not important…”.

Well, it does matter and it is important.  It is not for others to decide what a deaf person hears or doesn’t hear, or to decide what is important to them.  Yes, you might have to repeat yourself several times, or speak more slowly, but that’s how it is.   Often deaf people can hear on a one to one basis, but find themselves lost in a “noise fog” in crowds or several people talking at once.  This can lead to feeling a bit left out in social occasions.  Hearing aids and implants can be useful and transformative, but don’t work for everyone.  So social and workplace adjustments may be necessary to make things inclusive for those with hearing problems.

Brain injured people can also become depressed and anxious in the same way non-brain injured people can be.  The brain injury will often mask this, or such symptoms are put down to the brain injury and not investigated further.  There are some brain injured people who have insight into their condition and can remember how they were before their injury; possibly not all the time, but little flashes.  This can be the cause of great sadness.

But they may want to talk about it; try and remember what they were like as goals to be achieved.  They may not be wholly the “same”, but parts of them still are.   Perhaps (like me) they loved horses and riding and can remember this.   Well, ok, the dream of a gold medal at the Olympics may be out of the window, but would it be impossible to work towards actually getting ON a horse again, just to walk around a safe school, through the Riding For The Disabled organisation? The “hidden” you coming to the fore again?

However, as a last thought, Winnie the Pooh also said:

             “You can’t stay in your corner of the forest waiting for others to come to you. You have to go to them sometimes.”

If you have a brain injury, or are a carer or support worker, make yourselves visible.  Talk about your injury and how it affects you so people understand more about it and what to do.  Campaign for adaptations in work, public spaces and social situations.  Make a “disability” a normal and visible part of everyone’s day to day life. It’s a cliché to say that some people are only disabled because they’re not enabled, but cliches are cliches for a reason.   Design and architecture should have no problem in catering for many types of disability, but there’s always more to be done. Make sure you’re out there making yourselves and your needs seen and heard.

 

 

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