Friday, August 09, 2013

The Politics of Brain Injury

Summer is too nice to talk about the politics of the TTC or Harper, so let’s talk about the politics of brain injury instead.

Someone once said to me that she had never seen such fractured care as that for people with brain injury. I, myself, felt that I was straddling two worlds in seeking treatment for brain injury, which two worlds wouldn’t talk to each other, or rather one world refused to talk to the other one. I am thankful now that that seems to be changing; unfortunately, only with a few. And so, the politics are such that it guarantees that most people with brain injury will not reach their full potential as the valuable human beings that they are.

I was reminded of this when my mother called me up on the evening of August 8 and said that Toronto CTV news at six was about to have a segment on a concussion app. Later, we talked about it; after seeing it, she just knew I was mightily annoyed. The app part wasn’t what annoyed me so much as the last conclusion: the only treatment for concussion is rest. Oh really?

You see, the only treatment that the medical model can see is rest, and it bases its conclusions on the brain as a chemically-based organ. But the brain is an electrical organ, which uses chemicals as messengers between electrical signals.  True, the brain is the final frontier and is barely understood by anyone, but at least the psychological community understands this, knows it is an electrical organ, and has been working on understanding and treating that aspect of the brain. Some members of the medical model world have peeked into the psychological world and gone, hmm, that looks interesting. They’ve then stuck their whole head in, checked out the evidence, and gone: hmm, my patients could benefit from this. But they are the few. Meanwhile, tens of thousands of people go without hope for getting out of the hell of brain injury by being told that there’s essentially nothing that can be done except rest and maybe pills to manage the symptoms – not treat the injury, mind you – and manage the symptoms imperfectly at that, along with providing side effects.

To make the situation worse, people with brain injury visit a plethora of health care providers, none of whom talk to each other to coordinate care. They rely on the person’s broken brain to be their communication device. Um, smart move? No! Treatment of brain injury is essentially a political football between warring specialities.

The other political part of brain injury is that once you get one, you find that no matter how intelligent you are – and intelligence is not reflective of injury – you’re still treated like you’re a moron. Not by the lay public, but by health professionals who should know better and by homecare workers who know how to take advantage of slowness of thought, of loss of self-confidence, of loss of memory (can’t complain if can’t remember, eh?). They get this tone in their voice that makes you feel like a child and reaching out to smack them. I had this experience in one place that shall remain unnamed, and I was so outraged, I rather surprised them with the vociferousness of my objections. I don’t think the healthy ones expected a person with a brain injury to rise up and say no, we with brain injury are not children, we’re adults, and we expect to be treated like adults, not patronized as if we don’t know what civilized behaviour is. The problem isn’t knowledge, the problem is short circuiting, injured brains that are not being treated and healed so that we can actually be who we want to be. In the meantime, being patronized is not the solution; treating us as you would people with other kinds of physical injuries is the kind thing to do. But then that would require a complete change in thinking toward brain injury and incorporating the idea that it can be healed.

We need to bring disparate parts, especially the two warring worlds, together so that each can learn to respect the other and ultimately to ask themselves: how can we work as one to best serve and treat the injured so that they can reach their full potential and be functioning members of society again? Step one for me is to launch #ABIchat on Twitter.

I want #ABIchat to be a place of support for those of us with brain injury, and to have everyone who is involved in brain injury care, from professionals to friends, be a part of that, so that we can “build bonds between us as individuals and us as members of different groups, where we learn about each other, where we support each other, and where we learn more about brain injury and how to heal it and us.” And maybe, just maybe, we can overcome the divisive politics of brain injury.

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