We Are Not Broken

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.

Abilities Tab Introduction

The Living with Disability and Chronic Pain blog has added a new section. The author of this blog once wrote a monthly column for the Maple Ridge-Pitt Meadows Times. It was requested by several readers of this blog that we include a section with all the articles from my column. We have now done so. There is an Abilities tab on the top menu bar where readers can access all thirty columns.

Currently we do not have audio versions of the columns, but please check back as we hope to have them added by the end of June.

Here is the story of the Abilities column:

In 2005, I was running a chronic pain support group in Maple Ridge-Pitt Meadows. We had a great group of people who came out on a monthly basis to share their stories, laugh together, and learn to live with chronic pain and disability. One of the topics that came up the most was the fact that the members did not feel understood. They did not see themselves reflected within their community. They did not feel there was a voice speaking for them, for their lives, their experiences, their struggles. They saw occasional stories about people with chronic pain and/or disability in the media, but usually the stories placed the person in a victim or hero role. They wanted to see more stories about the everyday people with chronic pain and/or disability who weren’t victims, but who weren’t completing amazing feats either. As a person who lives with chronic pain and disability, I agreed that we were not well represented to the community, through the media, or in general. So the question remained, who was going to tell our stories? I decided I would.

During this period I had grown to know the editor of the Maple Ridge-Pitt Meadows Times, the local newspaper. I used the newspaper to advertise the meeting dates of the chronic pain support group, as well as to promote the power soccer team I was coaching at the time. I decided to approach the editor about my idea for a column. I explained that there were a lot of people in our community with health issues; I said that oftentimes people did not talk about their own chronic pain or disability, but once the topic was raised there was a relief in their ability to share their story. I asked to be given the opportunity to choose a story on a monthly basis regarding a local resident with health issues, chronic pain and/or disability, and tie their story to a local event such as a fundraiser, support group or walk/run. The editor agreed to give me an opportunity to share those stories, and I remain thankful to him.

My column ran between 2005 to 2006. I then moved out of the community and stopped writing the column. Then, in 2008, when Maple Ridge-Pitt Meadows was chosen to be the host of the 2009 B.C. Disability Games, of which I was involved, I once again started my column, this time with a focus on the athletes that would be competing in the 2009 games.

During the run of the Abilities column, I continually heard from people who were happy to see themselves, and their experiences, reflected in the local media. I heard from readers who used the column as a way to initiate conversation within their own relationships about chronic pain and disability. And I heard from people who had a loved one with chronic pain and/or disability who had began to better understand the challenges their loved one faced. I was very happy to know that my column sparked conversation, understanding, and awareness. I was also gratified to know that people clipped out the articles as a reminder that they were not alone in their experiences with chronic pain and/or disability. I hope that some of the same conversations, awareness, and understanding will stem from this Living with Disability and Chronic Pain blog.

When I started this blog I had several people ask for me to include my columns. I am so happy to know that years later people remember the stories that I shared, and that they want me to continue to share them with a wider audience.
I have chosen to show the articles unedited. Many of these stories were written for specific events, so I have crossed out information in the articles if the information is no longer valid. In the audio versions I have chosen to simply skip this information. Some of the articles are about groups or organizations and the information is still valid; in these cases I have left the information as is.

Improving the Lives of People with Communication Disabilities

Communication is essential to everyday life. Most of us communicate on autopilot – not consciously aware of all that goes into our daily communications. We talk and gesture, we use body language and facial expressions, we change our tone and pitch of voice. As we go about our day we utilize verbal and written skills, and we use pictures, symbols, and images to enhance our communication. We listen to others, trying our best to comprehend and truly understand what is being said. We use our communication skills on the telephone, by way of our keyboard, in meetings, on a one-to-one basis, at work, at school, during hobbies, with friends, families, strangers, co-workers, and even in conversations with ourselves. For close to half a million Canadians, communication is not on auto-pilot, it is a daily struggle to be heard, to be understood, to be taken seriously, to connect, and to be treated with respect. People with communications disabilities (also known as speech and language disabilities) struggle to have the broader population work with their alternative forms of communication, ensuring that they, too, are able to go about their daily lives.

A communication disability is an impairment that affects one’s ability to communicate. This may include the inability to talk, to articulate their words, or to receive, process, and/or comprehend concepts. Communication disabilities can be from birth or acquired later in life. Communications disabilities can be a result of ALS (Amyotrophic Lateral Sclerosis), cerebral palsy, autism, traumatic brain injury, stroke, side-effects of medication, multiple sclerosis, Parkinson’s Disease, dementia, cognitive disabilities, tumors, and aging.  Communication disabilities range in severity from person to person.

People with communication disabilities still communicate but they may use alternative formats, such as: letter boards, speech generating devices, a communication board or book (which usually has symbols and/or pictures), gestures and/or a communication assistant.

When there are discussions regarding accessibility, there is often a lack of conversation regarding communication disabilities. This needs to change. There are far too many instances where people with communication disabilities are being adversely affected by people’s inability, unwillingness, and/or disinterest, in communicating with someone who relies on alternative formats. This is a serious matter that greatly impacts a person’s overall quality of life. The loss of one’s ability to communicate can happen to any one of us, at any time; and most likely will happen to us as we age.

The inaccessibility of daily life for people with communication disabilities is widespread. The inaccessibility is experienced across service lines, whether it be governmental services, financial services, healthcare, emergency services, retail, employment, voting, legal services, justice services and/or police services. The inaccessibility of services is not a minor inconvenience but rather an extremely serious and important issue that needs to be addressed. The current inability of the system or services to properly interact with people with communication disabilities is leading to instances that put people with communication disabilities in dangerous situations. In several instances, across Canada, people with communication disabilities have been thrown in the drunk tank by police who didn’t understand that the person was not intoxicated but rather had a disability.  There are sometimes mental health issues, such as depression, associated with communication disabilities as people with communication disabilities are often socially isolated. There is an increased risk of abuse, as they may not be able to report incidents, or notify people of what is happening to them, or they may not be taken seriously. There have been several cases where people with communication disabilities have been told by police and justice professionals that they could not bring charges against those abusing them because they wouldn’t “make a credible witness”. There are high rates of unemployment and poverty amongst people with communication disabilities because workplaces are not open to alternative formats of communication.

Many people assume that those with communication disabilities are incapable of understanding what is being said but that is not always the case. We, as a society, have to work to ensure we don’t discriminate against people with communication disabilities. Interacting with a person with a communication disability does take more time, energy, and patience, but they, like those without communication disabilities, deserve to have an opportunity to interact, and to speak for themselves. There are ways to improve communication, such as: talking directly to the person, not assuming the person with them speaks for them, ask if there is anything that can be done to improve the interaction, be patient, don’t assume they don’t know what you are saying, don’t underestimate the person’s abilities, tell the person if you don’t understand, ask them to repeat what they are communicating, use everyday language, speak clearly, don’t yell, be prepared to communicate through gestures, pointing, pictures, or other alternative formats.

We all have a role in improving the lives of those with communication disabilities. Advocates can work together to ensure that those with communication disabilities are part of the conversation regarding accessibility issues. Service providers can make services accessible by ensuring that they are prepared to interact with people with communication disabilities. Individuals can work to ensure they don’t turn away from interacting with someone who relies on an alternative format of communication. Individuals can also work to ensure they don’t assume things about a person based on their ability to speak in conventional or non-conventional formats; and they can work to be patient, respectful, and communicate in a way in which they, themselves, would like to have others communicate with them. Together we can work to improve the lives of those with communication disabilities.

If you would like more information on how you can improve access to people with communication disabilities visit the website of Communication Access Now, a national campaign to promote accessibility for people who have speech and language disabilities. http://www.communication-access.org/can/about-can/