Kate has dedicated herself to disability advocacy after she became chronically ill with Complex Regional Pain Syndrome in 2014. While managing her own ongoing treatment Kate is focusing on accessibility issues and marriage inequality for disabled people in Canada. On her website, she actively writes about disability rights, chronic illness, pain, and life with CRPS. Kate also hosts a monthly Twitter chat #CRPSChat for people impacted by Complex Regional Pain Syndrome where people in the CRPS community connect, learn, and support one another.

Can you tell us about your work as a disability rights advocate?K: I am continually learning how to be a better advocate and still relatively new to it. I often call myself an “aspiring” advocate and I am sure that will continue as the learning and growing never stops. I have a disabling chronic illness which means I need a lot of rest and time in bed. Thankfully, the internet and social media has been a lifeline and has let me develop skills as an advocate while connecting with the disability community. Even if I am in bed for the day, there are usually a few moments of clarity where my “brain fog” lifts and I can get some work done online. My focus is on Canadian disability rights, and I write content and outline projects on my website www.kateandcrps.com. I am still learning much about policy and the community issues, and currently studying part time towards a degree specializing in (Canadian) Equity, Diversity, and Human Rights.

What kind of challenges is the disability community facing during the COVID-19 pandemic? How can these be addressed?K: The pandemic has impacted marginalized communities in greater numbers, including the disabled community. Many disabled people, especially those on disability benefits, live in poverty. The lockdowns and need for social distancing has created even bigger barriers for those trying to live on so little. Disabled people are more likely to have chronic health conditions which make them more at high risk for Covid-19 as well (although not all disabled people have chronic illness and vice versa). Mental health issues are greater as well when there is such stress and isolation. In policy, there are major reforms needed immediately to ensure the rights of disabled people to access healthcare equally, which is one of the largest barriers we face today. Every person deserves equal access to healthcare.

How do you face obstacles in life? What keeps you moving forward?K: I am proud to be disabled, but I do get pretty frustrated about the amount of chronic pain I live with. My chronic pain has definitely been the greatest obstacle I’ve faced in life, and it continues every day. I have a chronic neurological pain condition called Complex Regional Pain Syndrome (CRPS), and much of my time is spent on managing the illness.
My family is my main source of motivation. I have a picture board on my bedroom wall with pictures and objects that remind me of certain aspects of my life, mainly family, that keep me going. This was very intentional, so when I am having an especially hard day, I can look to it for hope and motivation. I am privileged to have such a wonderful family and could not cope without them.

Who is your inspiration?K: Organizers and advocates have been really inspiring to me lately, especially during the pandemic. People working day in and day out, behind the scenes, leading the conversations, organizing their communities, and educating others. They will always deserve more credit and more payment for their work, but they do it anyway because it is the right thing to do. I hope that, sooner than later, our society will treat organizers with the respect and wages they deserve for their expertise. Their contributions to advancing human rights movements and equality often go too unnoticed.

What are your other hobbies?K: I am a big reader! I love memoir and nonfiction and usually have an audiobook playing in my headphones. I also love music, have played drums since childhood and sing all the time. I’ve always turned to music (and singing) as a coping mechanism, but now I use it more than ever for coping and for fun. I can also really get into working on the perfect playlist.

What is your favorite place to visit? What do you love about that place?K: Since I have been living far away from my family for the last decade, my favorite place to visit is home. I love being able to just hang out with my loved ones and not have to rush through catching up, so ideally when I do go back for visits I go for as long as I can. Otherwise, I used to live in Switzerland and would always love to go back and have a fondue!

What is your suggestion for families of children with disabilities to empower their children?K: Disability isn’t a bad word! It isn’t a bad thing, and although we might not see it in the media, one in five people are disabled. That is a large part of the population! We may be underrepresented but we are out there. My first advice is to start to learn about the Social Model of Disability versus the Medical Model of Disability, and to speak to your children through that lens, and then to educate yourself on Disability Justice. The best way to learn about disability is from disabled people themselves.

What tips/advice do you have for those in our community who want to overcome adversity?K: Know that you are never, ever alone. No matter how unique your situation is, there are people out there who will at least understand you and be able to talk. There are many support groups available online right now for whatever you might need. Taking care of your mental health is really important, and building up your support system is needed even if you don’t feel like you need one. My favourite go to phrase when I am struggling? “I didn’t come this far to only come this far.”