The Journal of Multimodal Rhetorics

Caitlin Ray

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Keywords: disability, advocacy, immunocompromised people, anti-mask policies

Categories: Place-Making and Space-Taking on Social Media; Disability, Illness, and Survival (When the World Doesn’t Want You To)

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The following represents a year of correspondence I wrote to keep myself, and others high risk and immunocompromised, alive and safe during the pandemic. As someone who has isolated since March 2020, most of my advocacy was through emails, letters, and social media posts, where I argued for or against various policy decisions by sharing my story and experiences.

 

I.
May 2020. The university where I am a PhD candidate announces a return to in-person classes Fall 2020. The committee reviewing updated policies asks for feedback from graduate students and faculty who may be teaching.

 

Dear Professor, 

First, thank you for representing our concerns in the fall planning committee and asking us for feedback! I wanted to write to you as someone who both has a physical disability and is immunocompromised (and so very at risk of COVID-19).

Here are my concerns that I have not seen adequately addressed from the university or larger national discourse on in-person fall classes:

1. What is the process to identify potentially at-risk students/faculty/staff and provide appropriate accommodations for them? I worry that the university will be reactive rather than proactive on this, which will result in the work shifted onto the at-risk folks who are already at a disadvantage and may face additional discrimination. This work needs to start now because at-risk folks are not always older and are not always obvious.  Special consideration should be given to whom students, graduate students, and [adjuncts] disclose to, as they are more precarious and such disclosure of illnesses or other reasons they are at-risk can be used against them.  It might be most equitable to allow folks to request accommodations without disclosure or “proof” of being at-risk (i.e., let any instructor teach online who wants to).
2. Would accommodations also be extended to people who live with at-risk folks, but might not be at risk themselves?
3. I keep seeing “teaching class outside” as a possible option. This is inaccessible to many chronically ill and disabled students/instructors. Not only that, but many students who can adapt to a classroom setting (say, someone who is hard of hearing) may not realize they might need to request accommodations if class is outdoors. I also worry about rogue instructors who decide on their own to go outside with no warning for students in advance. There are countless other disabilities that are not accommodated in an outdoor classroom, too.
4. If classrooms are used in the fall, what is the process of cleaning each classroom between classes? Who provides the cleaning supplies? Who will be doing such cleaning? As someone with a physical disability and uses mobility devices, cleaning might take me much longer than someone else and certainly longer than a normal passing period.
5. If face coverings and masks are mandated, who enforces them? Unfortunately, since masks are now politicized, leaving enforcement in part to the instructor or student-facing staff could lead to possible violence and retribution against them.
6. Is there a realistic plan for if an instructor gets sick and/or dies from COVID-19? Who takes over the class? How is that new instructor compensated? Do we have enough counseling resources to support the trauma that can cause? Additionally, what if a student gets sick? Will the rest of us be notified? Will we all be required to quarantine?

Thanks so much!!

—Caitlin 

 

II.
May 5, 2021. I receive my vaccines in March and April, and I participate in a research study on vaccine antibody responses in immunocompromised people. I find out through that study that I did not develop an antibody response from the vaccine, most likely due to the immunosuppressive medication I am on.

 

 

III.
May 2021. The city I live in is planning on discontinuing its citywide mask mandate on May 25, 2021.  In addition to the end of the mask mandate, our statewide testing program ends July 31 with no replacement, and an executive order allowing data in rural counties to be publically available discontinues. This means that our state no longer publicly reports any Covid-related public health information in 76 of our 93 counties. I never hear back after sending this message.

 

Dear City Council,

I live in District 6 and am writing with concern about the upcoming end to the mask mandate. I have a rare muscle disease (dermatomyositis) that is treated with immunosuppressive medication. As a result, I am immunocompromised—as are about 10 million people in the US.

I have been vaccinated, but like many immunocompromised people, I did not create antibodies as a result (I was tested through a research study run by Johns Hopkins). That means I have to depend on herd immunity and non-pharmaceutical interventions like masking to protect me.

The end of the mask mandate seems like a foregone conclusion, especially with the CDC’s recent masking policy changes. While I would have liked the council to consider the county health director’s preference that we wait at least through June so that variants do not spread from events like the College World Series, I know that most likely would not be taken seriously.

So, I am writing to you and the council with two requests. First is to create clear metrics as to when masking might be needed again that does NOT depend entirely on hospital capacity. As a chronically ill person, I depend on being able to access hospitals for doctors’ appointments and outpatient medical treatments. These were all disrupted in the past year and as a result I am much sicker. Other factors like percent of positive cases in the community can catch Covid spikes before it taxes our hospital systems.  I also worry that the council and other elected officials do not have the political will to enact another mandate should it be necessary. Clear guidelines will make such decision-making easier to determine when masking is necessary without politics.

Second, I ask that you, and the council, include in your messaging about masking (and the pandemic more broadly) that some people may still need to mask because of health conditions and that our goal should still be herd immunity. Most of the messaging I read, from the CDC down, seems to emphasize that either you are vaccinated and protected from Covid, or you are choosing not to vaccinate and foregoing the risk. However, many people like me are vaccinated but still at high risk. We should not be harassed if we choose to continue masking, and there should still be consideration for us (especially because research shows that immunocompromised people drive Covid variants).

The only way for those of us who are immunocompromised to be able to rejoin public life fully is for others to still exercise caution, not to harass others who do choose to mask, and for herd immunity to be reached.

Thank you,

Caitlin Ray

 

IV.
July 2021. This is a MyChart message draft to my doctor asking about my risk of Covid as Delta starts to spread and most mitigation efforts end in my city. I never send this note. 

 

I had a couple of questions for you as my employer starts planning for an in-person fall semester. I am a writing center consultant, so I tutor students on writing in one- hour blocks.

I can’t get a sense of my risk at all anymore, especially with masking and social distancing being eliminated. I can personally wear a mask, but can’t require anyone else to. I work in a place where I think I can stay about 6 feet away from my client, but that makes the appointments harder. I can ask for accommodations, but I don’t know what to ask for or what makes sense.

Questions:

• Generally, is my risk high enough that I should ask for remote appointments/staff meetings as much as possible?
• If I am in a room with no one masking (but I am masked) do I need to be 6 feet apart from everyone else?
• Is there a better mask that I should use? I currently have a reusable cloth mask with a filter, and I wear a surgical mask underneath it. Should I try to get N95 or KN95s? I remember when the whole thing was that you wear your mask to protect others, so now I just feel like there is nothing protecting me even when I have a mask.
• Should I be monitoring community spread and adjusting in-person and remote appointments from there? Are those statistics even going to be updated since TestNebraska is ending soon?

Any advice would be appreciated! Thank you so much.

Caitlin Ray

 

V.
August 16, 2021. The Advisory Committee on Immunization Practices (ACIP), part of the CDC, asks for public input on a third dose of mRNA vaccines for immunocompromised people. I send this comment in for the public record.

 

Comment on Docket No. CDC-2021-0084

I am writing to encourage ACIP to recommend COVID-19 vaccine boosters for immunocompromised patients, especially those at risk due to medications like azathioprine and rituximab.

I have a rare autoimmune disease, dermatomyositis, which is treated with medications like azathioprine and rituximab. I have been on rituximab for the last 8 years and have carefully followed vaccination schedules to optimize my ability to create an immune response despite my suppressed immune system. Being young and immunocompromised during COVID-19 (I’m 34) has been difficult. I am a teacher and had to move to a different position in this past year so I could continue working. I am missing job and social opportunities because of COVID-19 and the lack of mitigation efforts by my community.

I felt so much hope when the vaccine was approved and I was able to get the shot. I quickly signed up for the Johns Hopkins Antibody Study to contribute to more research on vaccine responses in immunocompromised and chronically ill people. Through this study I found out that I did not create any antibodies to the vaccine. As a result, I have been advised to continue all the mitigation strategies from earlier in the pandemic—masking, social distancing, and avoiding indoor crowds.

This would be fine if my state and local communities opted to continue indoor masking, capacity limits, or even more robust and free testing. However, in Nebraska, all mitigation efforts are over, my place of work is requiring in-person staffing in August, our state-sponsored free testing program has ended with no replacement, and COVID data is no longer even made public in most counties. That means that it is difficult to even know an accurate positivity rate in the community.

Because of these factors, I have opted to not only continue working from home and seeing friends only remotely, but also discontinued necessary medical treatments, such as physical and aquatic therapy, to avoid risk. However, physical therapy is fundamental in the treatment of dermatomyositis, which causes muscle inflammation and damage. In fact, Gupta et al. (2021) writes that delay and discontinuation of such therapies due to COVID-19 can result in long-term poorer outcomes in myositis patients.

Being immunocompromised and the lack of mitigation efforts by the broader community have made this a very scary time to be chronically ill. I have given up job opportunities, medical treatments, and social connections in order to keep myself safe. Approving boosters for immunocompromised people would give us hope that we can start to be in public again with less risk, especially because the vaccine is safe and there is tentative research that shows that boosters can be beneficial.

While I am not giving up my mask anytime soon, the ability to work and join my peers is incredibly important.  I urge you to consider recommending boosters for people who are immunocompromised.

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Ultimately, part of the carework I engaged in this year (and continue to engage in) is my engagement with policymakers by sharing my experiences. While this often feels futile, I keep writing as I don’t know what else to do. I keep telling my story, because I know behind me are many similar stories that I know aren’t shared. So while I can, I want to make sure my story is visible even if it is not legible for those in power. In that visibility, perhaps someone, somewhere will be called to tell their own. Or—because I have told my story and am visible, others can make the choice to not share theirs and still feel represented.

 

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Bio

Caitlin Ray is a PhD Candidate in Rhetoric and Composition at the University of Louisville. She is also a Grant and Scientific Writer at the Department of Pediatrics with the University of Nebraska Medical Center. Her dissertation examines the role of narrative in rare disease representation and advocacy.

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