During an interview for a local paper about COVID-19 (Coronavirus), my mayor said: “Yes, people have died, mostly people who were in fragile condition.”
His statement was not unusual; it is messaging commonly used by public health officials, elected representatives, and media outlets when discussing public health threats; whether that threat is influenza, H1N1, COVID-19 or another infectious or viral disease.
https://twitter.com/azbrodsky/status/1233842494993031169
While the purpose of public service announcements is to quell fear, the underlying message from statements like the mayor’s is this: healthy people are considered, the threat is downplayed, and high-risk populations are left to fend on our own. If a public health threat is, by default, advertised as only causing “mild symptoms for most people,” then healthy people – who don’t see their own lives or health at risk – will not perceive the seriousness of preventing its spread to vulnerable groups.
If the central theme is that healthy people needn’t worry, that’s the message that will routinely be broadcast. And when public messaging from reputable sources is treated as fact, it can then be weaponized against anyone who suggests differently.
I see evidence of this most clearly within communities that are medically high-risk, where many people who have been absorbing the, “Don’t worry, only sick people will die,” messaging have internalized it; then taken it upon themselves to censor their own community. I have seen countless posts in private disease-specific Facebook groups where someone has posted about their fears about COVID-19 and others immediately respond: “You’ll be fine, just wash your hands,” “This is being blown out of proportion,” and “The flu kills more people, so stop.”
In addition to a lack of information about COVID-19 in general; this style of community-censoring, or gas-lighting, ultimately makes any available information harder to access for people who are medically at-risk, which leads to a lack of reliable support for people with legitimate health concerns because they don’t know where it’s safe to ask questions.
In short, messaging impacts the likelihood of disease spread to vulnerable groups. Transparency about high-risk populations built into all public messaging is critical to prevent the spread of new, dangerous diseases. I can’t stress how important it is to be aware of the privilege of healthy immune systems and the responsibility of those who have them to know: people with suppressed or compromised immune systems exist in large numbers and rely on healthy people to prevent the spread of viruses and other community health threats.
In a Facebook post about the aforementioned mayor’s problematic statement, I offered different language for public officials to consider using. His office adopted the language that same day in a video message about washing your hands.
Here is my suggested language:
And humane.
I also wrote these two powerful pieces for CreakyJoints here:
‘The Cripples Will Save You’; a Critical Coronavirus Message from a Disability Activist
Additional resources (will add additional links as released)
For immunocompromised/suppressed:
American College of Rheumatology announcement
Coronavirus Facts: What You Need to Know if You Have Chronic Illness or Are Immune-Compromised – from CreakyJoints
Coronavirus and Spondyloarthritis: Your Questions, Answered – the Spondylitis Association of America
Twitter thread by rheumatologist, Dr. Paul Sufka, MD
World Institute on Disability resources
General information:
Centers for Disease Control & Prevention
Peer-reviewed research (updated daily) from JAMA
If you’re able to make donations and you’ve appreciated this post, please consider a $3 tip via Ko-fi to support my advocacy & volunteer work. I live in poverty on SSDI, and this website is a passion project to raise awareness of the realities of living with a lifelong disease.
BeingCharis 
Guidance from UNICEF, the World Health Organization and the International Federation of Red Cross and Red Crescent Societies As of March 2020, the outbreak of coronavirus disease (COVID-19) has been declared a Public Health Emergency of International Concern, and the virus has spread to many countries and territories. While COVID-19 continues to spread, it is important that communities take action to prevent further transmission, reduce the impacts of the outbreak and support control measures.
LikeLike
Good message! Thanks.
LikeLike
Such an incredible post — great take-down of the power of language in the language of those in power. The obliviousness of the healthy is sometimes chasm-wide.If I got sick, I might not survive, but how many people am I going to infect before I kick the bucket? Protecting my health protects the health of the community. Twits.
LikeLike
Indeed, friend. I’m grateful for those of us in this chronic community for working to share information and make our lives valid.
LikeLike
I’m a new fan as of today. I just love your writing and clarity. It brings hope and new things to think about.
LikeLike
Thank you, Noelle! I appreciate you.
LikeLike
Thank You Charis. I’ve also seen several posts on fb support groups, stating exactly what you said. In fact, the Admin of my support group (I believe the one I met you on), actually stressed, not to worry…”wash hands, dont touch your face ” etc. I admire & respect what you do, your tireless effort to “educate the public ” is reassuring, to say the least. And, I agree, 100%! Those of us w A.S. or any autoimmune disorder, are already super vigilant about “hand washing ” etc, it’s the “general population ” that needs more awareness, the “healthy folks” are the one’s WE need to be careful of! Our own President doesn’t seem to acknowledge the consequences of the potential spread of this virus. As we speak, 2 people in my own town, in Sarasota/Bradenton Fl, have the virus. A 60 yr old, otherwise healthy man, (they’ve no idea how he caught it) & a woman in her 20’s! As of last night, a Mother & Son, from same school, are now quarantined, again, in Sarasota Fl. (Sarasota is a HUGE tourist destination, in fact, VP Pence just visited, & coincidentally, the Mother/Son became ill within 2 days of his visit!) I apologize, I didn’t mean to ramble. Prior to becoming disabled, I was a Social Worker, always advocating for those in need, from young children to the Elderly, to people in Hospice. Now it’s time to “self-advocate”!! (however, days like today, the pain/stiffness is severe & getting out of bed is rough). Tomorrow is a new day. Thank You again, for all you do! You’re a “shining light ” to our community of AS “Warriors “! Maura
LikeLike
Maura, indeed these are times like no other and it is vital (seriously!) that we maintain access to information and support. I wish us all the best as we consult with our doctors and make difficult decisions in the days ahead about how to protect ourselves. I am self-quarantining with the exception of a doctor appointment and possibly a speaking engagement in a couple weeks. Keep fighting for information!!
LikeLike
Chairs, Thank you for all you do. I follow you anywhere I can, you inspire me and have made me feel like life is going to be ok, on so many occasions. This post was about how I feel in my FB groups, these posts like”this is not a new post or question, stop posting about the Coronavirus, it’s no worse then the Flu”, UGH. Or the ones who post something like that, and then say but they’re not taking any meds. Ugh, again! I do not care if it’s asked a million times, people are scared and rightfully so. They should feel safe to express it without being bullied. Your sentiments about public knowledge is spot on! We NEED to know! And Healthy people need to understand, they need to try to help not spread it, if you’re sick stay home, otherwise you could literally kill me.
Again, thank you for all you do for us, and for never stopping your fight for us! 💕Kim
LikeLike
Kim, you’re so welcome! I really hope this messaging takes hold and that we who need extra support feel safe seeking it. How are you taking precautions?
LikeLike