As a chronic illness patient, I’m not immune to unsolicited advice. People love to share their opinions on how I should live my life as someone with rheumatoid arthritis or as a single mom. They eagerly weigh in on my tattoos or choice to rarely wear colorful clothing.
Normally I just shake off these differences of opinion because they really don’t mean much nor or have a significant impact on my well-being. We are all different. We are all allowed to speak our opinions. Water off a duck’s back, right?
But when our differences make us more vulnerable than the rest of society — and your chosen actions harm people like me or my community — I’m going to have a problem with your opposing opinions. I will need to create boundaries to protect myself and others in my chronic illness patient community.
My Take on the Freedom Convoy
Canada created boundaries with vaccines passports and masks during the COVID-19 pandemic. They did this so that others won’t get hurt from a disease — and to protect us from those who have made the choice to not get vaccinated or wear a mask in public.
The Freedom Convey have been getting upset with people who are complying with or setting in place those boundaries. This has been getting worse and worse in Canada as they parade in front of hospitals and schools, blocks border crossings and bridges, and takes cities hostage — while claiming to be fighting for “freedom.” (The “Freedom Convoy” is a series of protests and blockades in Canada against COVID-19 vaccine mandates and restrictions upon Canadian truckers crossing the U.S.-Canadian border.)
What I see are bullies gaslighting the rest of the country to get their way.
You have the freedom to make your choice, but you are not free from consequences or responsibilities. I have the freedom to point out that your choices harm my community, whether you like that truth or not. None of us are free from the grasp of disease.
Bringing Ableism to the Table
I have noticed that others are constantly pointing out the blatant racist messages and imagery that some (but not all) members of the Freedom Convoy are portraying. I have also noticed members of the Freedom Convoy defending they are not racist and are all about love. One slogan is “Hugs Over Masks” — yet hugs to some are risky if you’re at high risk for complications from COVID-19.
However, not many people are pointing out the Freedom Convoy are clearly ableists. Not many are fighting back about this blatant form of discrimination. Why?
Sexism, racism, ageism, homophobia, are all often brought up as wrong when discussing discrimination but I rarely ever hear anyone outside of the disabled community speak up about ableism or speak up for those with disabilities.
Ableism is the mindset that being nondisabled is normal, while everything else is defined around that in varying degrees of less-than.
This needs to change. Those of us with disabilities and chronic diseases need allies too. Ableism causes people to prioritize the health and independence of nondisabled people at the expense of those with disabilities.
What about our freedom? Why is it okay to discriminate and marginalize us? Health equals privilege. What happened to me — developing an immunocompromising chronic medical condition that causes severe pain and fatigue — can happen to anyone else when they wake up tomorrow.
Sometimes you just don’t understand illness until you have experienced it yourself
It is also a privilege to live in a country that has the medical system that Canada does, compared to other countries who really are under a communist regime, or even our neighbors downstairs, the U.S.
British Columbia, where I live, is privileged to have Public Health Minister Adrian Dix, who lives with chronic illness and understands what happens when we get sick a lot more than someone who’s been privileged to never experience chronic illness. Our Premier John Horgan has gone through cancer treatments before and now is going through them again during the pandemic.
Public health mandates protect the disabled, elderly, and immunocompromised. Our freedom and lives matter, too. If you were walking in our shoes, you would be fighting for these mandates to stay in place and slowly dissipate so we can continue to get the medical care we need without our medications going into shortage or doctors tied up with an overflow of unvaccinated COVID-19 patients.
If you think that the coronavirus doesn’t affect you, you should listen to those who it does affect.
You should also know that even with the pandemic becoming our new normal and as provinces open up again, those with a compromised immune system are forever having to take steps to keep themselves safe. In a sense, the pandemic never fully ends for us because we remain immunocompromised and at risk for more than just covid.
Why I Got Loud: I Am Sick and Tired
This girl with rheumatoid arthritis went down to counter protest the Freedom Convoy last month in Vancouver. I created a sign and wore my Fiercely Fighting Rheumatoid Arthritis shirt, ready to ask them what their messages say to my community, and to the loved ones of those who have died from COVID.
I did this mostly because I am sick and tired. I am sick and tired of the discrimination against disabled people that has been highlighted in the pandemic. I wanted to get loud — and I got loud.
Stop telling me to stay home if I am “afraid” of the virus or how it is not your duty to keep others like me safe, especially since you say you are fighting for the freedom of all Canadians.
It is already hard enough fighting an invisible battle like rheumatoid arthritis; now I have to fight for my very safety and well-being. I am not afraid. I am well-informed about COVID-19 and have ample lived experience with chronic illness.
Even if COVID-19 may not kill or hospitalize me, infections worsen my RA and are harder for me to fight off. Certain infections require me to pause my RA treatments, which can cause a painful rheumatoid arthritis flare up.
So let me point out the problem. Is it okay for me to go through worse disease activity because you can’t handle keeping others safe by wearing a mask for 15 minutes when you grocery shop?
You may want to re-think avoiding those few moments of discomfort if you knew that an illness like COVID-19 can not only trigger long-COVID but other serious illnesses. Would you like a lifetime of needles, medications, tests, and doctors? You might be setting yourself up for that.
I am sick and tired of…
- Being told to stay home if I am at high-risk because someone doesn’t want to take steps to consider my well-being.
- Hearing from my community how fearful they are to go out into public because these people are aggressively bullying others who wear a mask or ask them to be considerate of others.
- People leaving comments on my social media about how I am killing myself and my child because I protected us against the virus with vaccines and wear a mask.
Guess what, the vaccine did its job and protected me — plus it reduced my child’s illness when he was exposed to Omicron.
To me, it is not freedom you are fighting for. To me, you are fighting for your choice against helping out your neighbor who have a hard time fighting off the virus.
What I Witnessed at the Protest
I saw bullying
They claim their protest is not a hateful protest, but now that I have witnessed it with my very own eyes, I can tell the message isn’t about freedom, love, or being Canadian. The media isn’t spreading lies about the virus. During the pandemic, I have been featured in the media many times trying to get my message out, but some are not listening. That’s been their choice.
I saw freedom protesters who were trying to antagonize counter-protesters by getting physical and in their faces, especially news reporters who were just there to document and share both sides. I also experienced this, as one refused to respect that I asked him to stay six feet away but instead got inches from my face, yelling and name calling.
What kind of man threatens a five-foot nothing disabled woman? A bully.
I heard misinformation and witnessed anti-science aggression
As a patient advocate and partner in research I have worked with scientists and doctors on research studies. For the past three years, I have been attending arthritis and rheumatology conferences during which a main topic of discussion was COVID-19.
To hear the misinformation being spread by the Freedom Convoy is utterly alarming.
I heard protestors shout that zinc will cure my illness — my illness they couldn’t even repeat or pronounce it back to me. I saw parents bringing their children to the convoy who have probably never been told what chronic illness or having a compromised immune system means. I may have told the children to ask their parents what immunocompromised means.
I got loud
I am sick and tired and at high risk for infections. I will not shut up. Someone had to stick up for the immunocompromised, elderly, chronically ill, and disabled community.
During the counter-protest I was fueled with adrenaline — pain and fatigue were not a thing in my world for a few short hours — as I used up a lot of my pent-up frustration and energy to relay my message as loud and clear as I could.
I yelled. I shouted. I danced. I jumped around. I got emotional. I got angry. I got out what I needed to get out. I didn’t always behave well, but you know the saying, “well-behaved women seldom make history.”
And I would do it again.
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