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Advocating for Change

Over the past three years, I have become more involved in advocacy efforts, both as part of my job, and on my own time.

It first started at work, where I was brought in to help some of my co-workers with advocacy projects affecting our clients with sight loss in our community. Later, I applied to join the city of Calgary’s Advisory Committee on Accessibility, and was chosen to serve a one-year term. In late 2020, my term was renewed for two more years. And then, a little over a year ago, at the request of my boss, I joined the Calgary Ability Network (CAN), and soon after, I was asked to co-chair the Transportation sub-group of CAN.

The more of this work I do, the more I discover how much I enjoy it. I like being part of a group of like-minded people trying to make life better and more accessible for people with disabilities in our city and the province of Alberta.

If there is a down side, it would be that the more advocacy work I get involved in, the more I find out how much more needs to be done. The work is slow and takes a lot of time and effort, nothing happens over night. The thing that keeps me going is the energy from the other people in the groups I’ve joined, and seeing our plans take shape.

Recently, I was part of a group from CAN who spoke to Alberta’s Minister of Community and Social Services about the need for accessibility legislation in Alberta, similar to what has already been done in the provinces of Ontario, Manitoba, and Nova Scotia. Accessibility legislation is also in progress in British Columbia and Saskatchewan, so our group spoke to the Minister about the need for our province to enact similar legislation. She was receptive to the idea, which gave us all a boost.

I was also recently invited to be a panelist at a forum put on by another of Alberta’s political parties to talk about life in Alberta as a person with a disability. Each of the panelists had their own disability and each brought a different perspective to the discussion, but the underlying theme that I felt came out of the discussion was that Alberta needs to do more to level the playing field for people with disabilities in the areas of housing, employment, and access to services, to name a few. After the forum, I was asked if I would like to help the party develop its policy around disability. I said I would, and now I’m eager to see where it goes from here.

Something else I am finding through all of this advocacy work is that there just aren’t enough hours In the day to get it all done, which is probably why I felt compelled to write this post late at night when I found I wasn’t sleeping because my mind simply wouldn’t shut off.

In addition to everything else, I am still trying to gain support within my own workplace to raise awareness of Cortical Visual Impairment (CVI). As mentioned in a previous post, I joined a CVI focused group on Facebook in August 2020, and since then, I have ramped up my efforts to get people on board who can help me raise awareness of the condition and get eye care professionals, along with others in the medical community, to stand up and take notice of CVI so children with the condition can get the help and support they need.

Not long ago, I read a book called Eyeless Mind, by Stephanie Duesing, in which she shares her experience of discovering her son has CVI, but she didn’t realize it until he was in his teen years. In the book, Stephanie shares her frustrations of trying to get her son the help he needed, particularly with orientation and mobility, so he could navigate the world around him safely. Stephanie and her son encountered many professionals who simply refused to believe her son lived with sight loss.

I felt many emotions reading Eyeless Mind, from the shock Stephanie felt when she discovered her son’s sight loss, through every frustrating appointment, some of which made me wonder how those doctors could make anyone believe they were there to help.

Stories like that of Stephanie and her son, along with others I’ve learned from the CVI group, inspire me to want to do more, not only for kids with CVI, but also for people in my home city and province who live with other conditions. There’s a lot to do and I know I can’t do it alone. For now though, it’s after midnight, and my colleagues who join me in these efforts are probably all asleep, so I’m going to try and get some rest too. The efforts can continue tomorrow.

Presenting During a Pandemic

Mid November 2020 marks eight months since I started working from home because of the global coronavirus pandemic, and due to lockdowns and restrictions, a major part of my day job doing community education for CNIB, the Canadian National Institute for the Blind, basically stopped.

In the early days of the pandemic, I approached schools and seniors’ homes about moving presentations I would normally do in-person, to a virtual format, but there was no uptake. A few teachers told me their focus was on teaching core subjects like Math, English and Science. They didn’t have time for presentations on sight loss.

Spring turned to summer, a time when requests for presentations typically slow down in a normal year, but 2020 has been anything but normal. In the summer months, I started getting requests to speak to groups on telephone conference calls and video conferences. Shifting from my usual presentations about sight loss, instead I was being asked to talk with groups of both adults and teens about my experience with writing and self-publishing, having just released my second book at the end of April this year.

In September, schools were back in session and I think many other places were starting to adapt to our current reality balanced with a need to get things done. One of my regular contacts, an instructor of nursing students at one of the universities in Calgary called and asked if I could do a session for her latest group of students. I told her we could do a session but that we’d have to forgo the tour of our office we normally did, plus we’d all be physically distanced in our multi-purpose room and wearing face coverings.

Chatting with the instructor beforehand, I told her I wasn’t sure how the presentation would go with me wearing a face covering because I tend to use a lot of facial expressions during my talks, which might not come across the same way. I was eager to give it a try though because I was excited to be doing an in-person presentation again.

Schools are starting to call again too. I did a presentation by video conference for two classes of elementary students and the teacher told me some of her colleagues will be calling me as well.

One of the really cool things that has come out of being able to do presentations virtually is the reach we can have to audiences all over without leaving home. This past week I did a talk for a group of teens with sight loss and on that call were kids from different parts of Alberta and as far away as Halifax, Nova Scotia. The next day, I gave a presentation for a group of health care students in Edmonton, Alberta, from the comfort of my home office in Calgary. Had I been booked for both of those sessions in person, that would’ve meant a lot of travel and rushing around. With places getting more accustomed to having virtual sessions, it’s making it easier to communicate with people in different places from the comfort of home.

Presenting virtually comes with challenges though, like the need for good internet connections, and the need for the various platforms to cooperate with us, because after all, technology is only good when it works.

I have found that presenting virtually comes with one other challenge, which took some getting used to, and that’s not being able to feel the energy of the audience. Very often, all participants on a video or phone conference call are muted, so for me as a speaker, I can’t hear their reactions to my stories, and if the connection is lost, it may not be obvious right away.

During the Q&A sessions of last week’s calls my concerns about not connecting with the audience were put to rest by some of the participants. On the call with the teens, one of the kids came on and told me that she knew I wasn’t able to hear the audience reaction and assured me that she was getting good laughs from my stories (which was good because they were meant to be funny). On the call with the health care students, many of them thanked me for sharing my stories of living with sight loss and when we concluded the session, just before I pressed the button to disconnect, I heard one of the students tell her instructor I was the best guest speaker she’d seen in her two semesters at the school.

I’m sure many speakers would agree that moving to virtual presentations took some adaptation. I’ve known for years, particularly after my sight loss, that I am able to adapt to whatever comes my way and the pandemic is just one more thing the universe has thrown our way, but adjustments have been made and I’m still moving forward, so bring on the next  thing, because I’m ready.

Having Fun and Helping Others All at Once

If you’ve been reading my previous posts, you likely know that two of my favourite things are helping people to learn and having fun. Recently, I found a new way to do both

A few weeks ago, I joined a Facebook group called Cortical Visual Impairment, CVI Awareness and shared a couple of posts about my experience of being an adult with CVI. The posts were well received and some of the parents and teachers in the group told me it was nice to get my input because kids with CVI cannot always articulate their experience or tell their parents and teachers how the world looks through their eyes.

Reading those comments gave me a new idea to record videos about my experience with the ten characteristics of Cortical Visual Impairment, which I shared on my Life’s Not Over Instagram and Facebook accounts. I also shared a couple of the videos with the members of the CVI Facebook group and many of the members asked if the videos could be shared.

Being that the CVI Awareness group is private, it meant the videos could not be shared from there, which prompted about a dozen members to send me friend requests so they could see the videos on my own Facebook pages.

While it was nice to have so many new friend requests, they didn’t have to take that step because the Facebook page for my book, Life’s Not Over, It Just Looks Different, is not a private page, anyone can like the page and read any posts I put up there. So, if you’re reading this and feeling so inclined, feel free to give the page a like on Facebook, I’d be delighted to have you join us.

Seeing the great response from the members of the CVI group, and knowing there would probably be others who would find the information about my CVI experience useful, I decided the best way to make the videos easy to find and share, plus able to reach a broader audience, I started my own YouTube channel which, in keeping with the theme from the book, is called, Life’s Not Over, It Just Looks Different. As of this writing there are four videos posted on the channel, with many more to come. The videos I had originally posted for each of the ten CVI characteristics were not long enough, so I will be re-shooting each of those videos, going into more detail than I was able to share in a one-minute Instagram post.

 When the idea came up to start this channel, I had a flash back to a conversation I had with a friend many years ago. We had been discussing a photo shoot that had been done at her house and I asked her how much the photographer re-positioned and staged things in her house for the photos. She laughed and said my broadcast background was showing. I told her, “You can take the boy out of broadcasting, but you can’t take broadcasting out of the boy.” Apparently it’s true because I’m excited to be shooting and sharing the videos for my new channel.

Doing the videos for this YouTube channel has been fun so far, and the members of the CVI group tell me they’re learning things from my experience that might help them with their own children and students. That brings two of my favourite things together. I get to teach people new things based on my experience and have fun doing it. That sounds like a win-win to me.

Inspiring Others to Write

Since releasing my children’s book, Tommy Wants a Guide Dog, on April 29, I’ve had a few invitations to speak with groups about my experience with writing. All of the invitations have been to do phone or video conferences, thanks to the restrictions imposed by the world-wide pandemic.

One of the first ones I did was talking to a group of adults, most of whom have some level of sight loss. It was a great conversation, and because of the pandemic, the organizer of the call opened it up to people from across the country, so there were people from Toronto, Vancouver, Edmonton, Medicine Hat, and more. It was fun to be able to talk to people from so many different places all at once. I think I’ll chalk that up as one of the good things to come from the stay-at-home lifestyle many of us have been thrown into.

On three different occasions, I’ve been asked to speak with groups of kids, and specifically, kids with sight loss about my experience with writing and publishing my own books. I love talking to kids because I remember how great it was when Gordon Sinclair Jr., a columnist from the Winnipeg Free Press, came to talk at my junior high school when I was a teenager. I can’t say that he inspired me to be a writer on that day, but I do think he played a role in my love for media, which turned into a great career for me. I also don’t know if I inspired any of the kids I spoke with to start writing, but I might have planted a seed. Only time will tell.

Whether speaking to groups of adults or kids, or talking to people at book stores when I’m doing signing events, I’m often asked about how I started writing. I tell people very honestly that I didn’t start out writing a book. My first book started as a journal of my sight loss journey and only about four or five years into it did the idea of making it a book come to mind.

My message is always the same, just start writing. I have many half-written ideas in my computer that will never make it into a book. Some didn’t even go longer than one or two pages before the idea ran out of steam. I rarely delete them though, because I never know when I might come back to one or more of those ideas.

A question I was asked during one of the kids group calls was, “Did I ever feel like my sight loss held me back from writing or even publishing my books?”  My answer to that was a heart-felt, “No.” Quite honestly, I have read more books and done more writing after losing my sight than I ever did when I had my full vision.

That’s one of the reasons I have often said I really like the life path I’m on since losing my sight. I have done some very cool things, accomplished things I had never dreamed of before, and met many people I never would have crossed paths with if I hadn’t lost my sight.

Mr. Sinclair may not remember speaking at my junior high school all those years ago, and there was nothing special about our conversation that would make me memorable to him, and I’m okay with that. Years from now if one of the people from the groups I’ve spoken with writes a book, I hope I’ll learn about it, but whether I do or don’t, I wish them great success and I hope they enjoy it as much as I have.

What Motivates You?

Have you ever been asked, “What inspires you? Or maybe, “What motivates you? I’ve been asked those questions on occasion, and the answers might change from one day to another, but at the root of my answers will always be the word fun.

I’ve written about it before, and if you’ve read previous posts or my first book, then you likely already know my primary motivation is the pursuit of fun. Even when I look back on my younger years, dating back as far as age 12, one of my first reasons for wanting to work in broadcasting was because it looked – or more specifically at that time – it sounded like fun. I was living in a small rural community in northwestern Ontario. There wasn’t a playground nearby, the school wasn’t exactly close, and because it was primarily a farming community, none of my school friends lived within a reasonable distance. So instead, I became a big fan of the radio. Sure, I liked listening to the music being played, but there was something more to it for me, the people on the radio seemed to be having a good time..

When I got into high school, and enrolled in a broadcasting program for those three years of my life, that was the greatest thing that could’ve happened to teenaged me. Even in my off-school hours, I was doing broadcast related things, recording high school football games, practicing my radio skills on my lunch hours, and volunteering with the local cable access channel whenever I could. It’s been said that if you can make a living doing something you like you’ll never work a day in your life. I whole-heartedly agree with that statement because for the nearly 20 years I worked in broadcasting, there were very few days when it felt like work.

I read an article once that said the fear of public speaking takes the top spot on many people’s list of their greatest fears. The article said it even ranks higher than spiders and being mauled by a bear. I’ve thought about that, and in my case, I can say with 100 percent certainty that is not the case for me.

I would rather be in front of a group of people than be in the same room as a tarantula any day of the week. I live in Alberta, only about a 90-minute drive from the Rocky Mountains, and I visit the mountains as often as I can. I would still rather be on a stage with a deadly quiet, uninterested audience of people, than come face to face with a grizzly bear, or even a black bear for that matter.

I do a lot of public speaking for my job and around my books, and I want to make one point clear, even though I’d rather do that than come face to face with any of Alberta’s mountain wildlife, I still get nervous at times when I’m on a stage. From the time I joined Toastmasters back in 2008, I’ve always believed that you have to be at least a little nervous otherwise somebody needs to take your pulse because you might be dead!

On the subject of fears, I will happily admit that one of my biggest fears is heights, or as one person said to me, it’s not the fear of heights, but the fear of falling from the height that scares people. I think that’s actually a more accurate statement because I like flying in airplanes and I’ve stood on the glass floor at both the Calgary Tower and the CN Tower in Toronto. Those things don’t bother me because there isn’t a chance of falling.

I get nervous about things like ladders, because the ladder could shift or I might lose my footing or my grip. Despite my fear of heights, I like to challenge it. I did a bungee jump once, and I remember being terrified, but did it anyway. I’ve been on two zip lines, and those were a blast. I’ve even hung off the edge of the CN Tower in Toronto as part of the Edge Walk, and while I was a little nervous, I loved it and would do it again in a heartbeat. I don’t think I qualify as an adrenaline junkie, I look upon those things as something I needed to do because I thought it would be fun.

I read a book recently that said life is not supposed to be about fun and happiness all the time. The author maintained that fear and sadness are part of a full, well-balanced life. I believe he’s correct. I’ve felt fear and experienced sadness, and those things make me enjoy the fun experiences even more. I live by the mantra that I am on this planet for fun, because it leads me to try new things. It excites me, and it motivates me.

Now that you’ve had a moment to think about it, what motivates you?

Dreaming of a Post-Virus World

As provinces across Canada make plans to loosen restrictions and open up the economy again, I find myself wondering what this will look like, and what permanent changes will come out of this experience.

One thing that I think is pretty clear is that it will take a while for us to return to what was normal before the virus changed our daily lives. On a recent conference call with my co-workers, our company CEO said it will take longer to ramp up our operations again than it did to close everything down.

He’s right about that. Back on March 17, 2020, I had been out of the office for most of the day and when I went back about 4:30 p.m., I met one of my teammates outside the building who told me we were all supposed to start working from home the next day. We were advised to take our laptop computers, work cell phones, and anything else we needed to facilitate working from home and not to go to the office the next day.

Getting us back into the office, with whatever new measures are taken to ensure the safety of our clients and teammates, will take time to implement.

As a person with sight loss who relies on public transit to get to work, I anticipate there being problems with that too.

It was announced just last week that Calgary Transit is laying off 30% of its staff and cutting some routes because of decreased ridership because of the virus and the vast number of commuters working from home. When the ridership begins to increase again, it’s going to take time for transit to get its employees back to work and restore service to the levels we had back in February.

Depending on how quickly the public in general begins using transit again, I also expect there will be a hesitation on the part of many passengers to ride on crowded buses or LRT cars. In a way, I am hoping that is one positive change to comes out of this time in our lives. My hope is people will be less inclined to try and cram themselves into already crowded trains and buses.

I believe that at least in the short run, many places we visit in our daily lives like offices, shopping malls, public restrooms, and food courts will be kept cleaner than ever before. I think we’ll all be a little more aware of maintaining personal space and distance from those around us. And to that end, I also hope people who are not feeling well will stay home rather than being out in public infecting others.

It’s sad that it took this pandemic to remind many people about the importance of proper hand hygiene, and to cover their mouth and nose when coughing or sneezing. If we all remember those habits, that is some definite good that can come out of this.

When our lives return to normal, however different it might be from a few months ago, I will also be watching how our political leaders of all stripes act, and if this time in our history triggers any changes in thinking or perspective. Issues like having health care aides who work at more than one facility to pay their bills, and potentially spreading illness unknowingly. Companies who were reluctant to have staff work from home because they didn’t think it would work, but when forced into it, discovered that it is possible.

There is no doubt that all levels of government spent money they really didn’t have to keep our country moving forward as well as possible, and at some point, that money will have to be paid back, through tax measures or service cuts, but I hope politicians will think very carefully about where and how to make cuts. If a single nurse, health care aide, or member of the cleaning staff loses their job just because the government sees it as an easy way to save money, in my opinion they will not have learned a thing.

I don’t think there is any doubt that when Canada gets back to business after this period of isolation and physical distancing, life will look different, and my hope is we will have learned lessons and re-focused our priorities.

Ready to Launch

When I was younger, there was a commercial for a car company that had a jingle with the tag line, “Oh, oh, oh, what a feeling.”

Owning your first car, and driving a car are both very cool feelings, I won’t dispute that, but I have never had a car give me the same feeling I get from holding one of my published books in my hands.

In October 2016, when I held the proof copy of my memoir in my hands, it was an amazing feeling that nearly brought me to tears. It was the product of many years of work, and being able to hold it in my hands, and see my name on the cover, was incredible.

Writing a book is not easy. Maybe easier for some than others, but it takes a lot of time, effort, and commitment. That’s why many first-time authors receive praise for getting it done, for sticking with it, and seeing the project through to completion.

When I finished my first book, people asked when my next book would come out. In those early days of releasing my memoir, I didn’t know if I would have another book in me. I was fairly certain I was a one trick pony, and yet, as time went on and I moved into the next phases with my book, like promoting and trying to sell it, I realized I was really enjoying the whole process and began to get the sense I wanted to do it again. What I needed though, was the right idea for a project. I didn’t want to try and make a book out of any old idea in my head, I needed to find something I believed in. Fast forward one year later, and a new idea did come to light. I talked to some friends about the idea and received positive feedback, so I set to work.

But then I had a squirrel moment.

You know, one of those moments when you’re focused on one idea and another idea comes along which takes you almost completely off course. That moment happened after giving a presentation about sight loss to a group of elementary school students.

One of the kids asked me about guide dogs, and out of that discussion, another asked me why there aren’t any guide cats. I told them it was because cats get startled pretty easily and if a guide cat went up a tree, the person being guided would be taken up the tree too!

Later, when I was back in the office, I was talking with a co-worker and telling him about the presentation, including the conversation about guide cats. He burst out laughing and asked if I had ever thought of writing a children’s book. I said I hadn’t, but his question caused an even brighter spark to go off in my head. Over the next few days and weeks, I began thinking of other animals that would make for funny stories as guide animals. I let the idea simmer in my head awhile longer, and eventually sat down to write the story.

Once the story was written, I had to find an artist who could bring my ideas to life because I don’t draw. I’ve always maintained that I have trouble drawing stick people. I didn’t have to look far, because my friend Cerridwen, who had done the cover design for my memoir, loved the idea and said she’d always wanted to illustrate a children’s book, so we got to work.

It’s been about a year and a half since then and not only is the book done and printed, it will be launching in less than two weeks. International Guide Dog day is coming up, and what better day to launch a book about a little boy who wants a guide dog?

And there you have it, my next book, Tommy Wants a Guide Dog, will be launched on April 29, 2020, and I could not be happier. I picked up the first run of books from the printer this past week and opened one of the boxes to take a look. It’s still true. Holding that first copy in my hands felt amazing.

There was a plan for an in-person book launch, but that has been cancelled due to the current pandemic. So instead, a plan is in the works to go virtual with the launch.

I want to thank artist Cerridwen Sage Hicks for all of her effort illustrating the book, Shannon Simpson from CNIB Guide Dogs for helping organize the launch, Kevin Lanuke and the team at Calgary based, Blitz Print, for printing the books, and my friend and former colleague Brian Vey for the spark that led to the writing of the book.

For more information on the launch, visit https://www.facebook.com/lifesnotover/

Isolation Amplified

Depending on where you are in the world, we are more than two months into the COVID-19 pandemic, and into the most heightened state of physical distancing the world has experienced since SARS, back in 2003.

Personally, I am on week four of working from home and for the most part, I don’t like it. I am a people person by nature, an extrovert, so being home alone with only the cats for company most days is not my ideal work situation. There are still conference calls to join, lots of emails being shared, and occasional individual chats with clients or co-workers, but outside of those things, the level of human interaction I’ve grown accustomed to is greatly reduced.

However, being someone who likes to find the positives in nearly every situation, I have found a few upsides to working from home. For one thing, my commute is very short. Each day I pick up my laptop computer from a spare bedroom where it’s kept when I’m not working, and set it up on our dining room table, which serves as my office for the day. Working from home also allows me to wear casual clothing, which is a nice treat. I’m often more comfortable in a sweatshirt than a dress shirt, and as an added bonus, not wearing dress shirts to work each day has cut down on my dry-cleaning bill for a while.

In an effort to keep some form of structure in my day, I set up at the table at my usual start time, and when my day is done, I pack up my laptop and move it back to the spare room until the pattern repeats on the next work day.

Despite finding some positives in the situation, they are still outweighed most days by the feeling of being isolated from the rest of the world.

At work, my teammates and I often cite the feeling of being isolated from the world as one of the main things we are trying to help our clients combat. Statistics have shown that people who are blind or partially sighted are two to three times more likely to feel isolated than the population at large. That’s under normal, day to day living conditions. Add the need for social distancing to the mix, and it introduces a whole new level of isolation for people living with sight loss, especially if they have underlying conditions that could put them at higher risk if they were to catch the novel coronavirus.

For many people with sight loss, this period of social distancing brings with it an extra layer of challenge because ours is a very tactile world. Depending on the level of sight a person has, he or she might have to feel around to find a button on an elevator or to open a door. At grocery stores, while I can see many products on the shelves, to find a specific product, I either have to get really close to read it with a magnifier, or pick it up and bring it very close to me to read. And when it comes to the two-metre rule, a person with sight loss might not realize how close they are to others. For instance, a person with retinitis pigmentosa or glaucoma, both conditions which cause the loss of peripheral vision, might not be aware of someone standing right next to them. In my own case, it’s my upper field of view that I’ve lost, so if I’m sitting on a park bench, and my head is down, I may not see someone standing in front of me, or walking up to me.

My hope is all the efforts being made to flatten the curve of the COVID-19 virus will pay off and eventually it will pass so we can get back to life as we knew it before, although perhaps we’ll all be a little wiser for the experience and conscious of the world around us. My hope is the virus fades away before summer arrives, because it will be much harder for us to stay inside once the weather warms up.