Activist Rhetoric in the Immunodeficient Community (Project 1)

Video

https://www.youtube.com/watch?v=ND1bPnYpdGo&t=35s

Transcription

Intro:

Hey, what’s up you guys? I’m Sierra Moore. As a disclaimer, this is not the usual content you are going to be seeing from me, but I thought it would still be appropriate to share this on my YouTube channel where I plan on posting more casual videos in the near future detailing my journey with my own health as well as some more fun content about my life as a student. For now, I’m sharing with you my first project of the semester for my online English class that my teacher has allowed me to present in the form of a YouTube video.

For a little background on why I chose this topic, as you will come to find out in my later videos if you stick around I was diagnosed with severe eczema caused by many allergies and food sensitivities. I was also screened for some other conditions, vitamin absorption levels, and interestingly enough, my immunoglobulin G count. This was technically below normal range, so this was concerning to my allergist at first. This could’ve been a characteristic of primary immunodeficiency disease, or PI, an often life-threatening condition that we’ll get into more later. We were able to rule this out, but my doctor emphasized that if my insurance got wind of this, they could opt to stop paying for some of my medications and treatments since by their definition, I was much more susceptible to becoming sick and getting infections and was an unreliable candidate for their insurance. Since I was only slightly out of range and displayed no other signs of a more serious issue, we’ve tabled this concern and we’re going to keep an eye on it. I decided to look into the world of immunodeficiencies and those who fight for their rights, the activists. Without further ado, let’s get into activist rhetoric in the immunodeficient community.

Main Component:

So, health insurance can be pretty backwards. When you need treatment the most, sometimes companies will be hesitant to approve coverage. In the case of people with PI, this scenario can be all too familiar. PI is an umbrella term for over 350 rare chronic conditions in which the body’s immune system stops functioning properly. Usually for those with PI, the body does not produce enough immunoglobulins (antibodies) to fight off infections, viruses, etc. (“About Primary Immunodeficiencies”). Immunoglobulin therapies can be expensive, as it requires a large donor pool, but are essential. For people that can’t afford these treatments or get coverage, things can look pretty bleak. On top of that, diagnosis can remain a mystery for these patients, requiring multiple tests to even reach a conclusion, delaying the process of learning about possible treatment options. That’s exactly where the Immune Deficiency Foundation (IDF) comes in, not only to be a voice of resilience, but to provide information and resources to those affected by these conditions. But, how is their rhetoric and online presence effective? How do they function as a beacon of hope in what can feel like a hopeless situation? I will be going over the functions of design choices and accessibility of the IDF’s website and Twitter. I will also touch on their content and its relationship to their respective purposes and audience appeals within this rhetorical situation.

Since the IDF’s website’s target audience is those with PI and their loved ones, its content reflects that. Visitors are greeted with the IDF’s mission statement: “Dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiencies” (“Welcome to the Immune Deficiency Foundation”). The home page also features a large photograph of two smiling women, appearing hopeful at an IDF event, perhaps saying “this could be you,” providing visual insight into the happiness one may feel if they got involved with IDF. This immediately informs readers of their purpose and establishes a connection. A home page is a user’s first interaction with a website, and the IDF’s eager mission statement and heart-warming photo is a strong start in creating a comfortable relationship with their audience. Their website is especially navigable with tabs at the top of the page, a physician locator, a donation button, and a custom search bar. An interesting thing to note about the donate button is that if the user chooses to donate, they have a dropdown option to select a specific sub-sect effort that they would like to donate to, including everything from their unrestricted Core Service Fund to more specific endeavors such as their Awareness Fund, Life Stages Initiative, Annual Appeals, etc. This ensures the user that their money will go towards a specific cause and that specific cause only, so that they may donate freely and in alignment with their own interests and values. Also featured at the top, there is another dropdown menu that says “How can we help you?” This is inviting the user to seek help if they want it, creating a very hospitable space. Below all of these features, the website links useful articles such as “Health Insurance Denial: How to Appeal,” “What You Need to Know About Health Insurance before the End of 2019,” and “Bill of Rights for Individuals with Primary Immunodeficiency Diseases” just to name a few. The amount of well-organized resources that are readily available and several distinctions as a certifiable nonprofit backed by health councils all signals to their audience that this is information that they can trust--which is important in this specific audience, as people with PI might feel vulnerable and betrayed by the healthcare system. The conventions of their website design promote easy accessibility and allow users to find information through the use of the categorical tabs. Their straightforward design is a plus, especially since at times, their users may need to find information quickly. For example, someone may desperately need to find a PI specialist using the physician locator, or promptly need guidance with the process of appealing an insurance dispute. These are all things that contribute towards ethos, or the appeal to source credibility as mentioned in our textbook (Kleinfeld).

In the same way, the IDF’s rhetoric within the website itself plays a significant role in their relationship with the audience. The word choice of some articles are attention-grabbing, such as their recent article titled “Call to Action” on the home page, urging the audience to sign a petition to improve the newborn health screening system. Quite literally, this word choice may cause the audience to feel called to action, and therefore they may be more likely to give the article their attention. Similarly, “Bill of Rights for Individuals with Primary Immunodeficiency Diseases” is a clever title, since the phrase “Bill of Rights” garners feelings of hope, independence, and strength. This article starts every bullet point with the phrase “You have the right to…” This is an appeal to pathos, or the emotions of the audience (Kleinfeld), further empowering them and facilitating their interaction with the IDF as a resource. Augmenting their resourcefulness, the IDF ePHR (electronic personal health record) is an online resource “designed specifically for the primary immunodeficiency (PI) community” (“IDF EPHR and PI CONNECT”). This is also available in the form of a free mobile app. Not only does this extend to an additional genre, and therefore provides additional accessibility and outreach, but the mere effort to put out this app designed with these specific needs in mind is another boost to their ethos and reliability as an organization. To put it plainly, this is simply a useful everyday tool to have at their fingertips. They can keep track of trends in their condition, set goals, record immunoglobulin infusions, medications, allergies, etc. Through the ePHR, users can also opt to participate in PI CONNECT, a “Patient-Powered Research Network.” With patient consent, they become a part of USIDNET (The United States Immunodeficiency Network). While patient information remains secure and anonymous to the researchers, their history and statistics still help further scientists’ understanding of PI. This mention of the app on the website could be classified as another appeal to pathos, calling people to become involved in the future of science and betterment of those like them. Knowing that everything you’ve gone through can help your community is definitely a rewarding experience that their audience would feel compelled to take part in. Involvement in research like this could be viewed as a form of activism alone apart from interest in the organization’s other activities, while still being able to benefit themselves from the mechanisms available in the app.

The IDF alters their style of content for Twitter to appropriately match the conventions within a social media platform. Where their website was more of a resourceful archive of information, their Twitter account @IDFCommunity acts as an open medium to form a connected fellowship, and promote their recent articles, events, and commentary through a feed. Users can follow to have these promotions show up in their normal feeds and can also exclusively get notifications each time the account posts to be caught up and connected. This could serve as a more instantaneous resource for those who want updates regarding certain issues, in a similar manner to the website which, too, fosters fast accessibility.

The IDF often uses hashtags when posting to encourage users to share content by using them as well. Twitter’s conventions enable those who post using the #IDFCommunity or #livingwithPI to connect to a separate page showing others who used these hashtags outside of the actual Twitter account itself. This specific convention cultivates a community that feels warm and more comforting than what can sometimes be the stark, cold, and clinical reality of living with a chronic disorder. They even have a cute zebra mascot that is featured in #TipTuesdays named TZ. In homage to him, some posts also refer to this community of individuals as #ZebraStrong. The account also often shares pictures of events to promote future ones. These can be from the fundraiser walks in which participants can be seen rejoicing and wearing wildly colorful shirts depicting their zebra mascot, or something more subdued and casual, such as the regularly held “Get Connected” groups. This attempt to champion and bring together all of these different individuals affected by PI is an effective emotional appeal. Unfortunately, PI does not discriminate, as it can be present among the very familiar faces of our beloved TV personalities. Earlier this month, @IDFCommunity tweeted, “We are deeply saddened to hear the passing of @ESPN reporter Edward Aschoff, who received a diagnosis of Hemophagocytic lymphohistiocytosis (HLH), a type of primary immunodeficiency disease…” This commentary is another example of pathos, appealing to an emotionally distressing situation but being able to turn it into an opportunity for awareness and activism.

People with chronic conditions can feel lonely and hopeless at times. It’s important that those affected by them can find support that makes them feel like there’s a light at the end of the tunnel. The Immune Deficiency Foundation will continue to play a key role in the lives of those affected by primary immunodeficiencies. The IDF’s ease of access within these two platforms is not only a means of establishing a professional connection, but a personal one as well. Providing helpful resources is one achievement, but facilitating the means to connect this community is a uniquely beautiful thing. Here’s to choosing to be #ZebraStrong in the face of many challenges. 

Reflection:

This assignment allowed me to not only look more into a topic I was interested in, but better understand the importance of accessibility to resources and community, specifically in the situation of those with a chronic condition. I know that if I was dealing with a PI, their website would be a go-to for me in the appeal process, and I might want to attend some of their events advertised by their Twitter to make friends. I’ve also been able to broaden my perspective when it comes to the why’s and how’s of certain rhetorical choices. In light of recent events with all of these fake Instagram charities claiming to donate meals to Sudanese children or money to the Amazon and Australia fires, it’s good to see the positive impacts of outreach to affected people by real nonprofits. While I’m confident in my writing ability, some parts of this assignment were challenging. Since this particular organization isn’t super popular, I had to do all of the digging myself to get the information I needed for this assignment. While I was able to meet the word count, this was difficult at times. I felt like I had covered everything I could at some points, and lost sight of what other topics I could bring up, and it was hard to get ideas since there is not a whole lot of commentary online covering the IDF. In the future, I plan to better outline and scheme out my project on the front end so I don’t run out of things to write about, as opposed to very vaguely plan things out and hoping to find more things to talk about along the way. 

Outro:

Thank you so much for watching and I hope this gave you some insight into a topic that you may not be too familiar with. While I  plan on doing different things with my channel in the future, if I didn’t talk your ear off and you’d like to see more of me, go ahead and like this video and subscribe. I’ll see you guys next time! Take good care of yourselves.

References

“About Primary Immunodeficiencies.” PrimaryImmune.org, Immune Deficiency Foundation, primaryimmune.org/about-primary-immunodeficiencies.

“Bill of Rights for Individuals with Primary Immunodeficiencies.” PrimaryImmune.org, primaryimmune.org/bill-of-rights.

“Call to Action.” PrimaryImmune.org, Immune Deficiency Foundation, 17 Jan. 2020, primaryimmune.org/news/call-action-save-nation’s-newborn-screening-advisory-committee.

“Health Insurance Denial: How to Appeal.” PrimaryImmune.org, Immune Deficiency Foundation, primaryimmune.org/health-insurance-denial-how-to-appeal.

“IDF (@IDFCommunity).” Twitter, Twitter, 27 Jan. 2020, twitter.com/idfcommunity?lang=en.

“IDF EPHR and PI CONNECT.” PrimaryImmune.org, Immune Deficiency Foundation, primaryimmune.org/living-pi/idf-ephr-and-pi-connect.

Kleinfeld, Elizabeth, editor. “Part 1: Rhetoric, Reading, and Composing.” The Bedford Book of Genres: A Guide and Reader for Florida State University, by Amy Braziller, 2nd ed., Macmillan Learning Curriculum Solutions, 2019, pp. 7–8.

“Welcome to the Immune Deficiency Foundation.” PrimaryImmune.org, Immune Deficiency Foundation, primaryimmune.org.

(For Me)