Monthly Archives: April 2014

Tips for Interacting with People Who are Blind or Who Have a Visual Impairment

For the audio version go to: http://youtu.be/Sgf45TscIyM —–

The following are some things to remember when interacting with a person who is blind or who has a visual impairment.

As you approach the person, announce your presence, as well as your name.

Speak directly to the person in your normal voice.

Do not touch the person without first asking for, and receiving, permission. Respect their personal space, and understand that touch may startle them.

If you think you can assist them, ask them first and wait for their reply. If they reply in the affirmative, let them guide you in how you can best assist them. Follow their instructions. Don’t make assumptions about what they need. If you are unsure, ask them. They will best know what they need.

If they accept your offer to guide them, offer them your elbow and walk at your normal pace. Tell them about upcoming changes in elevations, steps, or barriers.

If you move away from the person, tell them that you are leaving. They may continue to talk as if you were still there, so it is polite to let them know when you are finished with the conversation, needed elsewhere, or need to go.

Do not talk to, or touch, service animals. While it is hard to resist the urge to touch animals, it is necessary. Working animals must concentrate on the task at hand. They may not look busy to you but they are on the job, and as such should not be distracted. Some people do let others pet their service animals, but assume the majority do not, and try your best to ignore the service animal. If you are unable to resist, ask first whether you can touch the service animal, and, most importantly, respect the answer.

If you are offering directions be precise. Do not use terms such as “over there”; this does not mean anything to the person. Do not point. Be as clear and concise as possible. If you can, use distances (100 feet, 10 metres, etc.). Let them know if there are any barriers in the way that they should be aware of.

Don’t assume a person can or cannot see. Some people who are blind have no vision at all, others are legally blind and have very limited vision, others have visual impairments that can differ in severity, shape, texture, etc.

Be patient with yourself. While interacting with a person who is blind or has a visual impairment, you may feel uncomfortable, nervous, unsure, or confused; understand that this can be a normal reaction to interacting with someone who has a disability, especially when you have little or no experience. When in doubt ask the person with whom you are interacting, they will best know what they need, and  if, or how, you can help.

Treat the person as you would anyone else. A person with a disability is a person first and foremost. Their disability may require some alternations to how you interact, but it should not affect how you treat the person.

Your Pain is Real

For an audio version go to: http://youtu.be/-PPdEjnBhjg  —–

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, or to label them as delusions, and to go the drug-based route 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 second of two blogs that will explore comments made by Ron Coleman and how they really resonated with me, and, I believe, will resonate with many others who live with chronic pain and disability.

Ron Coleman lived in an institution for years. Then one day, one of his support workers suggested that he attend a meeting for the Hearing Voices Network. He was resistant at first, but following some negotiations, he agreed to attend. When he arrived at the meeting a man came up to him and asked “do you hear voices?”, Coleman answered “yes”, and what the man said next forever changed the direction of Ron’s life; he said “the voices are real”. This statement lifted a weight off Ron; this acknowledgement that the voices he experienced were real, and not delusions to be ignored, denied, or medicated into oblivion, was life changing. The impact of that simple statement really resonated with me. I ran a chronic pain support group for six years, and there was not one person who attended our meetings who hadn’t been told by someone in their life that their pain was not real, that is was imagined, made-up, or exaggerated. Then they attended one of our meetings, and they were believed, and you could see a weight being lifted by the acknowledgement of the reality of their experience.

It can be very lonely having chronic pain. Only you truly know what your body is feeling. You can do your best to explain that pain to loved ones and medical professionals, but they don’t feel it, it isn’t as real to them as it is to you. This is especially the case when there is no accompanying visual sign of something being wrong. There is doubt, on their part, that the pain is real, or as bad as a person is saying. That doubt can be very damaging to the person with chronic pain, as they know what they are feeling but they don’t know how to get others to understand.

For many people with chronic pain it takes years before a diagnosis is discovered. I, personally, did the doctor/specialist dance for six years before being given a diagnosis. During these years, people with chronic pain are constantly questioned, doubted, and told it is all in their head. They encounter medical professionals who can’t figure out the pain, so place the blame on the patient instead of admitting that they just don’t know what is happening, or how to help the patient. The person with chronic pain begins to wonder if it is all in their head, they begin to doubt their own pain. They begin to doubt their own perspective, their own experience. Chronic pain is complex. It does involve emotional and psychological components. How could it not? When one has chronic pain, one’s life is turned upside down. Many have to leave work, school, quit hobbies, sports, and change the way they do everything in their life. Chronic pain affects relationships, interactions, productivity, and most of all, a sense of self. There is no denying that people with chronic pain deal with more than just pain. But that does not mean that their pain is any less real.

Unfortunately there are people who pretend to have chronic pain, who exaggerate their pain, or who use pain as a way to gain attention and sympathy, but, like so many things in life, that group is a tiny fraction, like 5%, of the overall group. It does not represent everyone with chronic pain, and yet so often it is the stick by which others with chronic pain are measured. It can become quite difficult to remain steadfast in one’s own perception of their pain when faced with this kind of constant doubt and cynicism. So when someone with chronic pain, who is used to doubt, negativity, and people thinking it is all imagined, is asked “do you have chronic pain”, and they answer “yes”, and they are told “your pain is real”, they, like Ron Coleman, feel a weight being lifted. They are relieved that they are believed. They can be overwhelmed with emotions, because their pain is so very real to them, but often denied by others. This acknowledgement can give a person with chronic pain the strength to continue forward, fighting for a diagnosis and/or treatment, secure in knowing they are believed by someone. Hearing, from another, that their pain is real, also demonstrates that they are not alone. Like those who hear voices, people with chronic pain can easily become isolated, feeling as if they are the only person who is experiencing this. But that is not true. Just as those who hear voices are not alone, neither are those who have chronic pain. And just as those who hear voices should not deny the voices, those with chronic pain should not deny their pain. They should also not let others dictate what one feels. If you have chronic pain it is real to you, and therefore your pain is real.

We Are Not Broken

For an audio version go to: http://youtu.be/2nUfj3nMKCY —–

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.