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.