Microaggressions have big impacts for disabled users online

Originally published by Cornell University Cornell Ann S. Bowers College of Computing and Information Science

By Patricia Waldron

In person, people with disabilities often experience microaggressions – comments or subtle insults based on stereotypes – but similar interactions, as well as new types of microaggressions, play out online as well.

A new study by researchers at Cornell and Michigan State University finds that those constant online slights add up. Interviews revealed that microaggressions affect their self-esteem and change how people with disabilities use social media. Ideally, digital tools will one day reduce the burden for marginalized users, but due to their subtlety, microaggressions can be hard for algorithms to detect.

“This paper brings a new perspective on how social interactions shape what equitable access means online and in the digital world,” said Sharon Heung, a doctoral student in information science. Heung presented the study, “Nothing Micro About It: Examining Ableist Microaggressions on Social Media,” Oct. 26 at ASSETS 2022, the Association for Computing Machinery SIGACCESS Conference on Computers and Accessibility.

Previously, little was known about online microaggressions. “If you look at the discourse around harms emanating from social media use by communities that are vulnerable, there is almost no work that focuses on people with disabilities,” said co-author Aditya Vashistha, assistant professor of information science in the Cornell Ann S. Bowers College of Computing and Information Science. “It’s surprising because about one in seven people in the world has a disability.”

When microaggressions occur in live settings, they are often ephemeral, with few bystanders. In contrast, “when they happen on social media platforms, it’s happening in front of a large audience – the scale is completely different,” said Vashistha, “and then they live on, for people to see forever.”

Additionally, social media platforms can amplify microaggressions, potentially spreading misinformation. “Online microaggressions have the ability to shape the understandings of disability for a lot of people who are not even involved in the situation,” said co-author Megh Marathe, assistant professor of media, information, bioethics, and social justice at Michigan State. “We’re very concerned about how it’s shaping the way the broader audience thinks about disability and disabled people.”

Heung and co-author Mahika Phutane, a doctoral student in computer science, interviewed 20 volunteers who self-identified as having various disabilities, and who were active on social media platforms. They asked the participants to describe subtle discrimination and microaggressions they had experienced, and the impact on their lives.

Patronizing comments like, “You’re so inspiring,” were the most common, along with infantilizing posts, like “Oh, you live by yourself?” People also asked inappropriate questions about users’ personal lives and made assumptions about what the person could do or wear based on their disability. Some users were told they were lying about their disability, or that they didn’t have one, especially if that disability was invisible, such as a mental health condition.

The researchers categorized the responses into 12 types of microaggressions. Most fit into categories previously recognized in offline interactions, but two were unique to social media. The first was “ghosting,” or ignored posts. The second was ways that the platform was inaccessible for people with various disabilities. For example, some users said they felt unwelcome when people did not add alt text to photos or used text colors they couldn’t discern. One person with dwarfism said her posts were continually removed because she kept getting flagged as a minor.

After experiencing a microaggression, users had to make the tough choice of how to respond. Regardless of whether they ignored the comment, reported it, or used the opportunity to educate the other person, participants said it took an emotional toll and damaged their self esteem. Many took breaks from social media or limited the information they shared online to protect themselves.

“Addressing this problem is really hard,” said Phutane. “Social media is driven to promote engagement, right? If they educate the perpetrator, then that original post will just get more and more promoted.”

Most social media platforms already have moderation tools, but reporting systems are sometimes flawed, lack transparency, and can misidentify harassment. The participants proposed that platforms should automatically detect and delete microaggressions, or a bot could pop up with information about disabilities. 

However, microaggressions can be hard for automated systems to detect. Unlike hate speech, where algorithms can search for specific words, microaggressions are more nuanced and context-dependent.

Once the scope and types of microaggressions experienced by people from various marginalized groups are better understood, the researchers think tools can be developed to limit the burden of dealing with them. These issues are important to address, especially with the potential expansion of virtual reality and the “metaverse.”

“We need to be especially vigilant and conscious of how these real-world interactions get transferred over to online settings,” said co-author Shiri Azenkot, associate professor of information science at the Jacobs Technion-Cornell Institute at Cornell Tech and Cornell Bowers CIS. “It’s not just social media interactions – we’re also going to see more interactions in virtual spaces.”

This work was partially supported by the National Science Foundation Graduate Research Fellowship and the University of California President’s Postdoctoral Fellowship.

Patricia Waldron is a writer for the Cornell Ann S. Bowers College of Computing and Information Science.

Does YouTube widen health literacy disparities?

Bioethics Public Seminar Series purple and teal icon

The 2020-2021 Bioethics Public Seminar Series (formerly the Bioethics Brownbag & Webinar Series) continues next month. You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Is Seeking Information on Social Media Harmful to Your Health?

Anjana Susarla photo
Anjana Susarla, PhD

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Zoom registration: bit.ly/bioethics-susarla

Studies of health literacy in the United States, such as the National Assessment of Adult Literacy conducted in 2003, estimated that only 12% of adults had proficient health literacy skills. This talk will examine how social media platforms such as YouTube widen such health literacy disparities by steering users toward questionable content. Extracting thousands of videos purporting to be about diabetes, I verified whether the information shown conforms to valid medical guidelines. Using methods from computer science called deep learning, I identify medical terms in these videos and then classify videos based on whether they encode a high or low degree of medical information. Using data from aggregate engagement with these videos, I discover that videos that are popular are less likely to contain validated medical information. A study on the most popular videos on COVID-19 likewise found that a quarter of videos did not contain medically valid information.

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Join us for Dr. Susarla’s online lecture on Wednesday, November 18, 2020 from noon until 1 pm ET.

Anjana Susarla is a Professor of Information Systems at the Eli Broad College of Business. Her work has appeared in several academic journals and peer-reviewed conferences such as Academy of Management Conference, Information Systems Research, International Conference in Information Systems, Journal of Management Information Systems, Management Science and MIS Quarterly. Her op-eds and research have been quoted and published in several media outlets such as the Associated Press, Business Insider, Chicago Tribune, The Conversation, Fast Company, Houston Chronicle, Huffington Post, Michigan Public Radio, Marketplace Morning Report, Nasdaq, National Public Radio, Newsweek, Nieman Lab, the Nikkei, Pew Research, Quartz, Salon, the Week, Wired and the World Economic Forum.

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

Would you ever consent to have your medical procedure broadcast on social media?

No Easy Answers in Bioethics logoEpisode 10 of No Easy Answers in Bioethics is now available! This episode features Dr. Devan Stahl, Assistant Professor in the Center for Ethics and the Department of Pediatrics and Human Development, and Dr. Christian Vercler, Clinical Associate Professor of Plastic Surgery in the Department of Surgery at the University of Michigan and Co-Chief of the Clinical Ethics Service in the Center for Bioethics and Social Sciences in Medicine. Drs. Stahl and Vercler address a trend known as Snapchat surgeons – plastic surgeons who amass sometimes millions of followers on the social media platform Snapchat by posting uncensored videos of operations they are performing. Together they offer their insight and expertise on the issue, and discuss whether these Snapchat performances are ethical. They also delve into the societal norms and power dynamics at play, and address how to move forward within the profession of plastic surgery in a world where social media seems to be here to stay.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.

About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

“Ask your doctor” – or just check Instagram?

This post is a part of our Bioethics in the News seriesBioethics in the News logo

By Robyn Bluhm, PhD

A couple of months ago, Kim Kardashian posted – and then quickly deleted – and then reposted – an Instagram advertisement promoting a morning sickness drug.

If this story sounds familiar, it may be because she did the same thing, for a different drug by the same manufacturer, in 2015. For the first post, the FDA issued a warning to the drug’s manufacturer, saying that the drug did not include information, e.g., about risks, required for pharmaceutical advertisements. Kardashian then posted a revised version that included the information missing in her initial post.

Direct-to-consumer (DTC) marketing of pharmaceuticals is not new. DTC marketing has been permitted in the U.S. by the FDA since the early 1980s, though it became much more common after 1997, when a number of restrictions on ad content were lifted. Since then, the use of these ads has greatly increased; in 2016 pharmaceutical companies spent $5.6 billion on ads, a 9% increase from the previous year.

Kim Kardashian Instagram post
Image description: Kim Kardashian’s Instagram post from June 20, 2018, showing a photograph of Kardashian holding a bottle of Bonjesta. Image source: @kimkardashian/Instagram.

Celebrity endorsements are also not new; they date back to the 18th century when Josiah Wedgwood used the patronage of the British royal family and other aristocrats to distinguish his china from competitors’. According to Megan Smith-Mady, one of the earliest uses of celebrity endorsement for pharmaceuticals had Mickey Mantel promoting an arthritis drug on TV talk shows. (YouTube actually shows him doing a commercial about athlete’s foot in 1976, though it’s best not to click on that link.) Smith-Mady also notes that the FDA responded quickly to this campaign, worried that viewers might not recognize that he was getting paid to promote the drug.

Since then, the relationship between celebrities and health care marketing has become more common – and more complicated. There have been many instances of celebrities appearing in commercials for medications (prescription or otherwise), and also of endorsing various medical devices and services related to health care.

Given all of this, Kardashian’s Instagram post is nothing new. Or is it? There is also reason to think that the use of social media in advertising for medical products may raise new ethical issues. For one thing, most countries do not permit DTC marketing of pharmaceuticals; in fact, Kardashian’s post includes a note saying that it is “for U.S. residents only.” Using social media is a way of getting around advertising bans.

Another thing to consider is the potential to target a younger market than can be reached with, for example, television or magazine ads. Not only do popular TV and film celebrities tend to have a strong social media presence and lots of followers, but celebrities whose fame is built entirely on social media platforms are becoming more common. One study found that respondents aged 13-24 were more likely to say that they would buy a brand or a product recommended by a YouTube star than by a traditional star. And while digital stars don’t (yet?) have the fame of “traditional” celebrities, top YouTube stars have Q scores (a rating of the familiarity and appeal of a celebrity) that are comparable to some traditional stars. Another study suggests that more children and teens consider social media celebrities to be role models more than they are influenced by musicians and actors.

Finally, I want to go back to the concern raised about Mickey Mantel’s talk show appearances – that it wasn’t clear that he was getting paid for his comments. In one sense, that worry now seems quaint; I think we are much more skeptical now about celebrity endorsements. And, in fact, some of Kardashian’s followers were less than impressed by her advertisement.

In another sense, though, new forms of online media do seem to complicate the relationships among information, marketing, medicine, and entertainment. Consider this: I first learned about the Instagram post via Bioethics.net, a site run by an academic bioethics journal. It linked to an article by Art Caplan, a well-known bioethicist (and one whose relationship with the media has been subject to attention). Caplan’s article appeared in LeapsMag, a new online publication focusing on news in the life sciences. On its “about” page, the publication hastens to describe itself as “an editorially-independent online magazine,” though you have to scroll down to find out that the reason it seems to be protesting its independence too much is that it was created by Bayer and is “the first magazine for mainstream readers created by a pharmaceutical company.”

But wait – there’s more. In looking online for information about Bayer and Leaps, I also found out that the company is currently feuding online with the makers of a new Netflix documentary, The Bleeding Edge. The movie documents problems in the medical device industry, and Bayer’s Essure contraceptive device is one of the central cases discussed (Bayer actually decided, for purely business reasons, to stop marketing the device the week before the documentary premiered. It’s worth noting, too, that Bayer released a “fact check” on the movie the day The Bleeding Edge premiered on Netflix, based on its April screening at a film festival.) And this feud is being covered by Variety, which started as a trade magazine for the entertainment industry, but now has a website and a Twitter following that vastly outstrips its print circulation.

What do I make of all this? I’m honestly not sure. I recognize that there are important differences between a documentary film and an Instagram post, even if both are reaching audiences through new online media. And I also recognize that there are arguments both for and against DTC marketing of pharmaceuticals. But it seems clear that the way that we get information about health and medicine is changing. Pharmaceutical companies are definitely paying attention to online media, so bioethicists should be, too.

Robyn Bluhm photoRobyn Bluhm, PhD, is an Associate Professor in the Department of Philosophy and Lyman Briggs College at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 6, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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More Bioethics in the News from Dr. Bluhm: Antibiotics: No Clear CourseTo Floss or Not to Floss? That’s not the question

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Article from Dr. Stahl in April ‘AMA Journal of Ethics’

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl and co-author Christian J. Vercler (University of Michigan) have an article in the April 2018 issue of the AMA Journal of Ethics. Their article, “What Should Be the Surgeon’s Role in Defining “Normal” Genital Appearance?,” appears in the journal’s issue on ethical considerations in plastic and reconstructive surgery.

Abstract: The recent rise in women seeking cosmetic surgery of their genitalia (labiaplasty) coincides with the increasing number of surgeons posting videos of these operations on social media accounts and websites. Sociocultural influences significantly contribute to our ideas of what constitutes healthy and pathologic, and surgeons have historically played a role in defining “normal” and “abnormal” anatomy. In the nineteenth century, Saartjie Baartman—a woman with a large posterior and unusually long labia minora—was used by physicians to “educate” the public about these differences. We examine the parallels with the twenty-first century practice of surgeons using social media to educate patients about the operations they perform and discuss ethical and professional hazards associated with this practice.

The full article text is available online via the American Medical Association.

Dr. Eijkholt and co-authors published in ‘Narrative Inquiry in Bioethics’ winter issue

Marleen Eijkholt photoCenter Assistant Professor Dr. Marleen Eijkholt has a new article in the Winter 2017 issue of Narrative Inquiry in Bioethics. Authored by Dr. Eijkholt, Jane Jankowski, and Marilyn Fisher, the article is titled “Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.”

Abstract: Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

The full text is available online through Project MUSE/Johns Hopkins University Press (MSU Library or other institutional access may be required to view this article).