I recently attended a talk given by Ron Coleman, from the Hearing Voices Network, an organization that is run by users, in a self-help capacity, for people who experience auditory hallucinations. This group teaches that people should explore, engage, and in some cases, negotiate with the voices they hear, as opposed to only utilizing the medical route which is to deny the voices, to label them as delusions, and to medicate which can add damaging side-effects to a person’s life. While I listened to Coleman talk about his own experience as a person with Schizophrenia who went from living in an institution to getting involved with Hearing Voices, and now being a husband, father, and speaker who travels the world, several things really resonated with my experience as a person with disability and chronic pain. This is the first of two blogs that will explore comments made by Coleman and how they really resonated with me, and, I believe, will resonate with many others who live with chronic pain and disability.
During the question and answer period Coleman told a story about watching his child play with a toy that had cut-outs of shapes; his boy was trying to fit the circle piece into the square cut-out. His son was getting very frustrated by it not fitting, and he hammered the piece until it went through. Coleman said this is what the medical system does to us. In that moment I was overtaken by a tremendous feeling of recognition, relief, and sadness. I am that circle. I don’t fit into a neat and tidy square that the medical system can put me into, and so the medical system has hammered at me, trying to get me to fit into that slot, until I am battered, bruised, and feeling broken. But I am not broken. You are not broken. We are not broken. The medical system is broken. The medical system tries to force people into the same box, no matter how individual their shapes or needs. This makes the person feel broken, when really it is the system that needs to be repaired. We have people who seek help for their disability, their chronic pain, their mental health issues, who are damaged by their experiences within the medical system, and left feeling broken.
In my seventeen years of living with chronic pain and disability I have been battered by the medical system, the government and society. I don’t fit into a neat box. I live with both a visible and invisible disability. My chronic pain does not run on a schedule. No two days are the same. My levels of pain and source of pain change on an hourly basis. I don’t fit into a neat box, and so I have been made to feel like I am the problem. And as much as, intellectually, I understand I am not the problem, emotionally I have absorbed that and I have felt battered and broken, and I have felt as if I am the one to blame. And I know I am not alone in feeling that. When Ron Coleman shared how his experience was that the medical system was keeping him ill, I understood that, and I was overcome with emotion because for so long I have tried not to think about the fact that the very system I went to for help has made me feel broken. But listening to Coleman speak, I realized with intense clarity that the people with disabilities and chronic pain are not broken, it is the system that is broken. As an advocate I know this, but as a person with disability and chronic pain, there is still an unspoken part of me that feels as if I am problem, as if I am broken. When I left the talk, I sat on a bench in a parking lot and absorbed that simple statement “we are not broken”. It had a lot of power to me in that moment. I was overcome with relief, of recognition with another’s experience, with an understanding that my experience, being battered by the medical system, was not unique, which proved that it was not on me.
In my work with Citizens for Accessible Neighbourhoods, I have come across a lot of people who feel battered and bruised, and who do believe they are the problem, that they are broken. Society doesn’t always help, either, by treating people with disabilities as broken or less than, when really who isn’t somehow a little damaged by life? No one gets through life without being tossed about and battered, but that doesn’t mean we are broken. And it doesn’t mean that we should feel as if we are the problem in a system that is not set up to deal with individuality.
We are not broken. There is power in that statement because for so long we have been told that we are; whether through words, intimations, presumptions, or spoken or unspoken messages. It is a phrase I will continue to use, to remind myself, I am not the problem, I am not broken. I do have to continue to work within the medical system and with the government, and I will most likely continue to be battered and bruised, but I will be stronger as I remind myself that the system is broken, but I am not.