Over the last few months, CIM Content Intern, Eleanor Medley, took a look at the past, present, and future of the diabetes world. She took a detailed look at the American Disability Rights Movement. We wanted to follow that up and dive a little bit deeper into how the disability rights movement has impacted Canadians, specifically, how this might impact you and your life with diabetes, and outline a few great ways to get involved in local advocacy efforts.
(We’ve also included a few of our favourite photos from the CIM archives in this post to help better paint the picture of the incredible things that a community of people living with disability can do. And continue to do.)
Let’s start out by facing this head on: We know that there is a divide in the community about the use of the term disability when we are talking about life with Type 1 diabetes. It can create tension. We get it. Just as ‘Your Diabetes May Vary’, so may the experiences that have brought you to where you are today and have helped shape your views. And your reactions. They are valid.
Lauren Salko is wearing in a long grey dress and is crouched in the middle of a dirt trail, with her arm over her chocolate lab and diabetes alert dog, Silas. The path is winding through grass and trees.
We encourage everyone to check out our friend Lauren Salko’s blog over at Beyond Type 1: IS SOMEONE WITH TYPE 1 DIABETES “DISABLED”? Something that sticks out is Lauren’s discussion of the social model of disability. The idea that, although many people (up to 14% of all Canadians, in fact) live with some form of altered physical, sensory, or cognitive function, it is often societal views about those impairments and the way our communities are built that impose the greatest disability on individuals. It’s an unfortunate reality that the word disability is often associated with the negative: weak, inability, defect, incompetent.
Two people wearing large hiking backpacks stand on a cliff overlooking Gros Morne National Park. There is a small pond to their right. A view of the ocean is far off in the distance. This photo was taken on the 2016 CIM Adventure Trek.
In a way, we, as the diabetes community, have an opportunity here. CIM has prided itself on its work to “redefine life with diabetes” through it’s programming, events, connections and conversations. The way we relate to the term disability may be another opportunity to help redefine not just life with diabetes, but also what it means to live with any altered physical, sensor, or cognitive function in general, making an impact that could be felt far outside the boundaries of our own diabetes community. It does not mean weak. It does not mean unable. It does not mean… well, you get the point. (We feel like we need to give a shout out to the team at Toronto’s Sick Kids Hospital for helping to further push this narrative. If you haven’t seen their ‘Sick Kids Vs’ campaign, stop what you’re doing and watch it now.)
A group of 12 people stand on a sandy beach with ocean waves in the background. They are all wearing large hiking backpacks. Several people hold hiking poles. They are smiling. This picture was taking on the 2017 CIM Adventure Trek.
Now that we’ve set the stage, let’s dive in a little deeper.
Let’s start off by laying out the official definition of disability, according to the Ontario Human Rights Commission. A disability is defined as:
“any degree of physical disability, infirmity, malformation or disfigurement that is caused by bodily injury, birth defect or illness and, without limiting the generality of the foregoing, includes diabetes mellitus, epilepsy, a brain injury, any degree of paralysis, amputation, lack of physical coordination, blindness or visual impediment, deafness or hearing impediment, muteness or speech impediment, or physical reliance on a guide dog or other animal or on a wheelchair or other remedial appliance or device,”
Did you catch that? They include Diabetes Mellitus right in the definition! That has led to some benefits for our community that we’ll tell you about a little later on.
Two young women with blond hair are balanced high in the trees on a high ropes course. They are wearing harnesses, gripping a rope with their right hands, and using their left arms to balance. They are looking down toward the ground. This photo was taken at CIM’s Pacific Northwest Slipstream in 2012.
Chef Siva Swaminathan stands outside, in front of a picnic table with a range of ingredients laid out in front of her. The ingredients include a watermelon, a range of spices, and some vegetables. This photo was taken as part of CIMI’s Cooking in Motion series.
Disability rights in Canada evolved much in the same way as they did in the United States. In the 19th and 20th centuries, people living with disability in Canada were segregated from the rest of society for a variety of reasons. Some of these were altruistic, being founded with the idea that bringing people with similar disabilities together would allow for more focused, structured care and support. Some of these, however, were created out of a belief that people with disability were less able to contribute and participate in society.
Interestingly, prior to the 1970s, most organizations supporting people living were run by sympathetic parents and professionals and not by people living with disability themselves. Beginning in the 1970s, things started to change. More organizations began to pop up around the country that were developed and run by and for people living with disabilities. Moving forward to 2008, although the pendulum had begun to swing, there still were very few organizations, especially in Canada, created by and for people living with Type 1 diabetes. And thus, Connected in Motion was born.
Throughout the years, there has been much advocacy for people living with diabetes across Canada, the majority of it carried out by Diabetes Canada and the Juvenile Diabetes Research Foundation. It’s worth noting, that up until 2019, an organization’s ability to influence laws, regulations, or government policies at any level was limited to no more than 10% of their annual expenditures, and all advocacy must be done with the sole purpose of advancing an organization’s charitable purposes as registered with the CRA. CIM’s charitable purposes are educational nature, which is why what you see us doing is largely… educational! We don’t carry out direct advocacy work ourselves, but you’ll often find us pointing you in the direction of the partners in our community whose work focuses on advocacy.
A woman who is dressed in black is playing trampoline dodgeball. She is poised on a court of several small trampolines holding two dodgeballs in her hands. She is preparing to throw one.
We wanted to share with you some of the important outcomes of various disability advocacy campaigns over the years. Many of these outcomes have translated into and are recognized as our rights as people with diabetes.
DISABILITY TAX CREDIT
Ongoing advocacy efforts have focused on making the Disability Tax Credit more accessible to people living with Type 1 diabetes.
The Disability Tax Credit (commonly referred to as ‘the DTC’ in the diabetes community) was created in 1988 as a way to help people who had significant out of pocket costs associated with physical or mental disabilities. In 2005, the credit evolved further and became open to individuals who were either markedly restricted in their day-to-day lives or who required life-sustaining therapy.
People with Type 1 diabetes can qualify for the DTC. In fact, the Canadian Revenue Agency (CRA) uses case studies of individuals with Type 1 diabetes and on insulin pumps in their examples when guiding people through the DTC application process.
You do not just receive the credit, however, because you have Type 1 diabetes. You need to complete a pretty time-intensive application process, working to document every activity you do through a typical week that relates to life-sustaining therapy.
To learn more:
Connected in Motion: Disability Tax Credit, Type 1 Diabetes, and a Call to Action in Canada
Diabetes Canada: https://www.diabetes.ca/learn-about-diabetes/your-rights/tax-credits
JDRF Canada: https://www.jdrf.ca/resources/learn/research-news/disability-tax-credit-and-type-1-diabetes/
REGISTERED DISABILITY SAVINGS PLAN
One of the major benefits that comes from qualifying for the Disability Tax Credit is access to a Registered Disability Savings Plan (or RDSP). The purpose of an RDSP is to help people living with disability in Canada plan for financial security in the future. As a community, we know too well that diabetes is expensive. An RDSP can help individuals to build a fund that they may use in the future to help mitigate some of these costs when income may be low (and without dipping into other retirement funds).
For more information: https://www.rdsp.com/
DIABETES, INSURANCE & COVERAGE
As someone living with Type 1 diabetes, you may have faced barriers and discrimination related to accessing insurance. We have heard many stories throughout the community about people facing immediate denial of various types of insurance or being forced to pay absurdly high premiums simply due to living with Type 1 diabetes.
In 2020, JDRF Canada worked on the #AccessforAll campaign focused on making diabetes management technology more accessible to people living with Type 1. In part through their efforts, the Yukon Government adopted a program in the summer of 2020 to reimburse CGM and Flash GM. To learn more about JDRF’s advocacy efforts around access, click here.
