JointHealth™ express   December 22, 2020

Seasons Greetings

Reflections on 2020

When I reflect back on the past 12 months, specific words immediately come to mind: Challenge, fear, science, pain, suffering, death, inequity, and bravery, among others. Every person on the planet has been touched by two things: A virus known as COVID-19, and a global awakening that gross inequities exist in all aspects of life for people of colour and Indigenous Peoples.

For some communities – like our arthritis community – the virus has had an even more profound impact than it has in the general public. Already living with the daily challenge of wide ranging medical and health care issues, immunosuppression and pre-existing disability, people with arthritis became further isolated by the public health measures put in place because they were at much higher risk of getting COVID-19.

But as bad as its been for our community, some unintended consequences gave us reason for optimism. The start or increased use of “virtual care” saw how quickly health care provider and arthritis patient could adapt and adopt new ways of delivering and receiving some aspects of health care. We saw our community skillfully navigating how to safely get groceries, how to do their banking and pay bills, and how to stay connected with their social networks. In a nutshell, COVID–19 became just one more thing people with arthritis had to deal with in their lives with chronic disease and disability.

What I didn’t see coming during the COVID-19 outbreak was how the pandemic would force this understanding of what it is like to be immunocompromised, disabled or mobility challenged upon many healthy people who have never had to think about it. It’s one of the “silver linings” of the pandemic: Greater understanding on the part of able-bodied people about how brave, resourceful and resilient the arthritis community is.

As we head into the holiday season, we find ourselves in the second wave of the pandemic and facing heightened public health measures across Canada; rightly so. Many medical experts feel this is the most virulent virus in history. And even though our community is strong, the ACE team worries about its members and their families and friends and want to urge them to stay safe by following the public health guidelines in their communities and province. With the arrival of COVID-19 vaccines, our hope is for a much brighter, more “normal”, 2021, but until the majority of Canadians are inoculated, we must remain vigilant through continued masking, practicing physical distancing and good hand hygiene throughout the coming months.

When I think about our own ACE work environment and what we’ve had to do to keep operating as close to full capacity as possible, I’ve watched what other workplaces across Canada have had to do to rapidly adapt to help curb the spread of the COVID-19 virus. In doing so, it has become clear that society and employers large and small must be able to address the inequities disabled people, Indigenous Peoples and people of colour face in the workplace, otherwise, those inequities will grow deeper. That’s why ACE is placing addressing inequity at the heart of each of its five 2021 Work Plan activity areas: Self-advocacy, Models of Care, Reimbursement Access to Medications, Virtual Care and National Patient Surveys.

Key to meeting the goals we’ve set out in these work areas is the need to deepen the arthritis community’s own awareness and knowledge of existing health inequities in Canada. Whether you are abled or disabled, as we get closer to vaccine deployment and thoughts of a return to “normal” life, we must use our voices and advocate to government and employers to make positive changes around accessibility and disability inequity. That means putting disability inclusion on top of leadership agendas around government Cabinet tables and in corporate board rooms, specifically focussing on existing inequities faced by Indigenous Peoples and people of colour.

Thanks largely to the Black Lives Matter movement and discussions in Canada around racial discrimination, nothing less than system change is going to contribute to solving the disability inequalities that exist today.

One necessary part of changing the system is listening to more voices. That’s a great new year’s resolution for all of us. One of the ways to ensure Canada can become more accessible is by integrating the voices of disabled people, Indigenous Peoples and people of colour in the design and development of policy, technology and infrastructure.

It’s so hard to find any positives coming out of the past year, but in the pandemic, we have come closer to understanding the challenges our disabled colleagues, friends and family members currently face and how important it is to including disabled voices at the policy making table. In June 2020, the United Nations Secretary-General António Guterres released a policy brief1 about the need for a disability-inclusive COVID-19 response and recovery plan, urging governments “to place people with disabilities at the centre of COVID-19 response and recovery efforts and to consult and engage people with disabilities”.2

With that as a blueprint, let’s make a difference for the disabled in 2021. The disabled are not “poor weak” or “poor sick” citizens. We may have a disability, but we’ve got ability, potential, resources, brains and incredible spirit to contribute. Listen not just to our needs. Listen to our solutions that could help all of us be more responsive and better for everyone in times of a pandemic and when we return to a “new normal”.

In closing, I want to share how proud I am of the ACE team and all they’ve been able to accomplish in their disrupted work and personal lives to continue delivering timely, science-based, quality information, education and support for our members, subscribers, followers and friends. Their dedication to the arthritis community is so deeply appreciated by me and our board of expert scientific, medical and consumer-patient advisors. To give them time to reconnect with their loved ones at home, hopefully curled up with a good book, or working a puzzle, walking their dog or doing other COVID-19 safe activity, our office will be closed from December 23, 2020 to January 3, 2021.

Wishing you and your families a safe, healthy, peaceful holiday season,

Cheryl Koehn

Person with rheumatoid arthritis
Founder and President
Arthritis Consumer Experts
1 United Nations: A Disability-Inclusive Response to COVID-19
1 United Nations: COVID-19 Response