The algorithms behind our online presence are diagnosing, misdiagnosing, and disabling us on the internet without our consent. In a new article, Amy Gaeta of the University of Wisconsin Madison utilizes ‘crip autotheory’ to explore the impact of ‘diagnostic advertisements’ on our self-conceptions.
Gaeta points out that the algorithms may not be analyzing us so much as our “data doubles’–the informational profiles that each respective algorithm has created to understand our scrolling and to keep us scrolling. Indeed, as you read this article on your smartphone, tablet, or computer, you contribute to your ‘data double’s profile.
“Rather than simply a collection of a person’s data, the data double is a shadow self that is created by the capture of data,” Gaeta writes. “People are broken down into series of discrete informational flows… then transported to centralized locations to be reassembled and combined in ways that serve institutional agendas.”
Perhaps one of the most insidious institutional agendas is that of biomedical surveillance. Gaeta explains the approach:
“Rather than contribute to the robust and growing literature on how algorithms discriminate against disabled people, I consider how the phenomena of diagnostic advertisements may alter a user’s sense of self in ways that disrupt the ability/disability binary and the various identities built around it. I take a humanities-based crip technoscience approach and ask: What might the rise of diagnostic advertisements mean for the social status of disabled people and disabled users’ sense of self? In answering this question, I will focus on 1) The potential of diagnostic ads to shift the contours of disability communities and identities, 2) What the ads suggest about larger trends in medicine and surveillance, and 3) The slipperiness between the user and their data profile.”
Over three months (March 2022-May 2022), Gaeta, a disabled scholar, utilized their own Instagram feed as a case study for what they call ‘diagnostic advertisements.’ Diagnostic advertisements work to identify consumers on the internet and then sell them health and medical products. They necessarily medicalize our day-to-day life solely to profit off of it, argues Gaeta.
Diagnostic advertisements on Instagram, TikTok, and Facebook differ from the pharmaceutical advertisements we see on television because they are uniquely intimate and private and function to pull more data out of us to then sell off again.
Gaeta comments on their Instagram feed:
“Apart from some diet food products, the majority of advertised health-related products would be ones that would keep me online, including telehealth services, therapy journaling apps, nutrition trackers, etc.”
What is more, when we see a pharmaceutical ad on television, we can write it off immediately because we know that the ad is being shown on every television that is turned to the same channel. However, Gaeta argues that because diagnostic advertisements are intentionally, intimately, and repeatedly placed on our respective ‘For You’ pages, they facilitate a kind of curiosity that can be meaningful to identity creation. In turn, they can also harm how we know ourselves—forcing us to question and negotiate our identity at any moment.
Gaeta puts it this way:
“By interjecting diagnoses into my feed, a projection of power through the screen, the ads create a sense of intimacy and personalization with me, even if that intimacy is unwanted or unsettling. As a disabled person, I find a strange sense of excitement about seeing their ads that make disability public and interject disability into the feeds of millions. I recall how diagnosis and claiming disability were pivotal moments in my self-cultivation. For this exact reason, the ads that made incorrect assumptions about my body began to facilitate a curiosity about how my body worked, and eventually a sense of incoherency about myself. The more ads I saw, the more I wondered: “Could I have borderline personality disorder? What about my data says I’m pre-diabetic? Why does Instagram think I’m suicidal? Am I?”
A key takeaway is that the algorithm is making predictions based on online behaviors that have not been reliably linked to these outcomes or conditions in the real world in any empirical sense.
Over time, through their research, Gaeta began to understand these advertisements as a sign of the times for the “medicalization of everyday life.” A phrase the author uses intentionally to refer to “the commonplace practice of subjecting people to the clinical gaze in non-medical spaces.” The diagnostic advertisements are the clinical gaze on your smartphone screen, they argue.
However, rather than diagnosing your physical body, the algorithm is diagnosing your data—or, to be more precise, your data double.
“In a world centered on ability,” Gaeta claims, “subjecting even the data double to the clinical gaze implies that even the virtual body is a site of medical micromanagement and commodification.”
In an email correspondence with Mad in America, Gaeta stressed that the self-diagnosis that can occur through interactions with the diagnostic advertisements could be both helpful and harmful, depending on the circumstances:
“… it isn’t a bad thing if someone sees these ads and the ads are correct or they do resonate with their bodymind experience. There’s nothing wrong with that. But we should be critical and think carefully about our experience and consult various types of sources, including community, before self-diagnosis.”
Gaeta also points out that these diagnostic advertisements appear and affect diverse demographics differently. In particular, disabled people who rely heavily on the internet to work, connect and find community are more likely to be inundated with diagnostic advertisements. Whereas Black people, who are historically underdiagnosed and face barriers to accessing healthcare, may not receive as many diagnostic advertisements, continuing the legacy of what Gaeta calls the “cis-heterosexist criteria for diagnoses.”
“My exploration of diagnostic advertisements can support conversations about the web of influences at work in present-day personal biomedical decision-making and disability identity. My data double being disabled in ways that I am not poses questions about where our bodies begin and end in the era of mass surveillance and big data. One way to study this question is by using target health and medical advertisements to examine the slipperiness between the self and its data double. In tandem, the concept of diagnostic advertisements may benefit disability and/or technology justice activists by illuminating how these ads may compromise users’ decision-making and how platforms use algorithms to shift the norms around personal health information and privacy. With the right set of tools, examining these ads could be a way to work backward to understand how companies are identifying target audiences and if they are reproducing disability tropes and stereotypes in the process.”
Gaeta’s article highlights how Facebook, Instagram, and TikTok algorithms frequently get it wrong. Past research and reporting have demonstrated how these programs can misjudge suicide risk and send police to intervene with people who have been vulnerable on Facebook. Although these algorithms can, at times, allow us to explore different parts of ourselves, they can also be harmful. Gaeta’s work reminds us to remain vigilant when our data double is being diagnosed online.
Gaeta, A. (2023). Diagnostic advertisements: The phantom disabilities created by social media surveillance. First Monday. (Link)