Monthly Archives: March 2014

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.

How to Properly Prepare for and Participate In Medical Appointments

Going to see a doctor, for any health issue, can be stressful. For people who live with chronic pain, they often spend years of their lives doing the doctor dance; going from doctor to doctor, specialist to specialist, bloodwork to x-rays, CT scans, MRIs, etc., and then doing it all again. Going from one doctor to another, desperately seeking a cure, a fix, a solution, a way to manage the pain, can heighten the stress and often leave one in an emotional state not conducive to working with the medical professional to find, and understand, the next step. I, personally, have experienced many an appointment where I was so stressed, so anxious, so high strung, that I practically vibrated through the appointment, missing key words and phrases, misunderstanding what was being said because I had played the appointment out in my head numerous times before even setting foot in the office, and being too emotional to share my symptoms and experiences. I could have saved myself a lot of frustration had I been a better prepared participant in this dance. The following are tips on how to cut down the stress, frustration, fear, anxiety, and confusion that can accompany a medical appointment or the doctor dance.

Before your appointment it is vital to know exactly what you want to get out of the appointment. Make a list of what you want to discuss. List what questions you have. Be as concise as possible. Prioritize your list; what is the most important issue or question? You may not have time to address everything on your list, so be sure you know what is most important. Write a brief description of your symptoms and their frequency, as well as duration and if they have changed over time. Some people keep a journal of their symptoms. As you prepare for the appointment be ready to share this personal information with the medical professional. If you have found information online, which you wish to discuss during the appointment, bring copies of the information, and include links and website names.It is a good idea to bring a notebook and writing utensil, or device you can type on, so that you can take notes on what is being said, if anything doesn’t make sense, if there is something with which you need clarification, if there are words you need to look up, and a general summary of the appointment.

It is also wise to bring someone you trust to the appointment. Having an extra set of ears during an appointment can be vital to understanding what was discussed. Oftentimes people with chronic pain are emotional during appointments which can blur their ability to retain and remember what was said. Having support, encouragement, and company, by way of a trusted friend or family member, can ensure the appointment goes smoothly, and that the information is retained. It can also be useful as there are times when medical professionals act in an unethical or unprofessional manner, and having a witness to this can be beneficial.

Checklists can be a helpful tool for medical appointments. Examples of checklists include: medications and dosages (including supplements, vitamins, herbs, oils, etc.), diagnosis, allergies, specialists visited, tests done, surgeries, hospital visits, alternative therapies, herbal remedies, and anything else that may be pertinent. Include dates where you can.

Be aware that you have the right to request copies your medical records. This can assist in creating checklists, keeping records, and understanding what, and who, you have already tried and visited. If you are seeing a specialist, request that all copies of records be sent to your general physician.

During your visit, it is best to mention paperwork (such as disability forms, disability placard applications, etc.) and prescriptions towards the beginning of the appointment as these can be time consuming.

During the medical appointment, utilize your list but be flexible with its use. Questions, not previously thought of, can naturally arise during medical appointments, so don’t rigidly stick to your prepared list if other questions seem more important. If you are given new medications, ensure that you know how to take it, the frequency, whether there are food or drink restrictions, and how long you can be expected to use the medication. Don’t leave the appointment until you understand the next steps. It is useful to repeat what you have heard from your doctor to understand if your perception meets theirs, and if any clarification is necessary.

It took me six years of the doctor dance before I was given a diagnosis that fit. In the beginning, it took me several years before I realized that I had a responsibility, as a patient, to be prepared, to understand the purpose of the appointment, and to do my best to keep emotions in check as much as possible during appointments so we could discuss what was happening and what the next steps were. Being an active participant in this process helped to create more effective, less stressful, and more productive appointments. The process was not easy. It was often emotional. And it could be, in turns, frustrating, hopeful, confusing, maddening, stressful, and tiring, but the more prepared I was, the better I felt about my role as an active participant in the doctor dance, and in my search for a way to live with my chronic pain.