Recently, I got a letter from a consultant in neurology. The letter says, ‘Scarlett tells me that she has suffered from left-sided hemiplegia since birth.’ This line riles me. I most definitely did not tell him that I have ‘suffered’ from left-side hemiplegia since birth. I told him that I have had left-sided hemiplegia since birth.
Of course, he is paraphrasing and rewording the conversation for a formal letter. That, I don’t mind. What I mind is the word ‘suffered’.
This is not the first time I have seen a description of cerebral palsy, or any other disability, prefaced with the word ‘suffered’.
Many people can only conceive of disabilities as ‘bad’ things. A life of limping, not being able to do two-handed tasks, being more susceptible to pain and injury, sounds like, in no uncertain terms, a life of suffering. A life that is without those things is, automatically, a happier life, a life freer of suffering.
Except it is much more complicated than that.
Physically, cerebral palsy has caused me pains that none of my twenty-something friends complain about. I’ve had a reoccurring pain in my lower back, a niggling pain in my knee, an uncomfortable stretching pain in my calf. Yes, sometimes I just wish I had two fully functioning hands and could walk at average speed.
But, most of the “suffering” I have experienced under the umbrella of cerebral palsy, has not been to do with the physical symptoms themselves but how the world manages my cerebral palsy. Suffering has come from being picked-on and stared at. Suffering has come from inaccessibility. Suffering has come from my condition frequently being misunderstood by doctors. But I also think my disability has made me more sensitive, more compassionate, more contemplative. Of course, in another possible world, where Scarlett Murray was not born with cerebral palsy, I may have followed more or less the same life path. But the truth is we cannot know that. I am Scarlett. And having cerebral palsy is bound up with my identity and my personality and my interests. It cannot be isolated. It is not that my disability defines me, it is that is integrated into my sense of self and life experience. Suffering has been a part of my life – as it is everyone’s life. Suffering has been invoked or related to my cerebral palsy, but it has also had nothing to do with it. In short, my relationship with cerebral palsy is complicated, and it cannot be simply said to be one of suffering.
You may feel that I am getting carried away. After all, this is a consultant in neurology, he is talking about the medical side of things, not my life-story. But I am not just a disabled arm and leg. I am a person. And I do not need a medical professional to determine, in one line, that I have suffered.
‘Suffered’ is just an unnecessary word.
There’s a simple language change that needs to happen. ‘Scarlett has left-sided hemiplegia.’ It is neutral. It takes all the judgement, the pre-determining, the negativity out of it.
You may feel that you have suffered with cerebral palsy, or another disability. The point is that is your judgement to make. Not anyone else’s.
Me – and only me – should be the judge of whether I am suffering or not.
Now, I can open a letter like this, message my disabled friend, and say, ‘apparently I’m suffering.’ And we’ll both have an eye roll and a laugh about all our suffering.
But when I was a teenager, and much less secure in how I viewed my disability, letters like these (this is very much not the first one) didn’t make me roll my eyes, they hurt me. They set me back. Made me tearful. The negativity in them confirmed all my own loathing for my disability. They made me feel that my life was pre-determined as one of inescapable, fixed suffering. They told me that there could not be anything joyful, or even neutral, about disability.
So, I just implore you to remember that it isn’t just a disabled arm and leg that reads letters like these. Disabled arms and legs belong to people. People who think and feel. And they should be the only person to determine how much they have ‘suffered’.