Thursday, July 9, 2015

Cerebral Palsy: does it matter if it's genetic?

Here's what's been making the headlines lately: members of the Australian Cerebral Palsy Research Group, based at the University of Adelaide’s Robinson Research Institute now claim that genetics is to blame for up to 45% of Cerebral Palsy cases. Previous research suggested recently that it's the cause of at least 14% and that was controversial enough. For decades it was widely accepted that CP is the result of brain injury before, after or during birth. Doctors were accused of not putting newborns in incubators fast enough, while parents like my mother traced every moment of stress or questionable lifestyle choice during pregnancy as a reason behind it. 45% is of course an odd figure, because it splits the numbers right down the middle. It has the potential of making CP malpractice litigation virtually impossible as every case will come down to what is genetic and what is not and what we can prove. And with little research behind it I doubt we'll ever have the science to know or to build a case that's strong enough. But that's not what I wanted to focus on. As a person born with Cerebral Palsy, I'd like to talk about what these findings mean  to me personally. I can't quite explain it, but there's a certain degree of comfort in thinking of it as something  that happened to me, be it in the first minute of my post-pregnancy life rather than I was always like this. Having that one moment to trace back to gives me however short before and after. As if there was a version of me that didn't have "it" before "it" happened. Like an accident. Like being hit by a speeding car. Like getting a sports injury.

I don't know how other people with CP feel about it and I don't claim to be speaking for anyone but myself- but for me thinking of it that way allowed me to mentally separate myself from it. It was external rather than internal. We of course know that CP is an umbrella term for a host of conditions somehow involving the brain and mobility - there isn't a one size fits all model or explanation and we need to be mindful of that. Different people with CP are affected in different ways, to different extent and with different symptoms so that's why making blanket statements is potentially dangerous. You can't help to wonder though- what can these new findings mean to Cerebral Palsy therapies and research? On one end it can prompt a search for a scientific cure, better diagnostics in identifying and addressing this as a genetic problem. On other- what will happen to all the forms of rehabilitation based on exercise intended to "restore" a patient to norm, if there's no "norm" to restore to? What does it mean to methods promoting use of sheer will to "overcome it" if it's not something that happened to you, but was always part of you, always shaped you, there was never a "you" without it? Do they now turn to science for a fix?


  1. Good question, Ralph. But here's a thought: if around half of all instances of cerebral palsy can be accounted for by genetics, how do we know which half? (See

  2. This comment has been removed by the author.