Silencing and Stigmatizing the Disabled Through Social Media Monitoring

In 2019, the United States’s Social Security program comprised 23% of the federal budget. Apart from retirement benefits, the Social Security program provides Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), which are disability benefits for disabled individuals unable to work. A multimillion-dollar disability fraud case in 2014 provoked the Social Security Administration to evaluate their controls in place to identify and prevent disability fraud. The review found that social media played a ‘critical role’ in this fraud case, “as disability claimants were seen in photos on their personal accounts, riding on jet skis, performing physical stunts in karate studios, and driving motorcycles”. Although Social Security Disability fraud is rare, the Social Security Administration has since adopted social media monitoring tools which use social media posts as a factor in determining when disability fraud is being committed by an ineligible individual. Although human rights advocates have evaluated how such digitally enabled fraud detection tools violate privacy rights, few explore other human rights violations resulting from new digital tools employed by governments in the fight against benefit fraud.

To help fill this gap, this summer I conducted research to provide a voice to disabled individuals applying for and receiving Social Security disability benefits, whose experiences are largely invisible in society. From these interviews, it became clear that automated tools such as social media monitoring perpetuate the stigmatization of disabled people. Interviewees reported that, when aware of being monitored on social media, they felt compelled to modify their behavior to fit within the stigma associated with how disabled people should look and behave. These behavior modifications prevent disabled individuals from integrating into society and accessing services necessary to their survival.

Since the creation of social benefits, disabled people have been stigmatized in society, oftentimes being viewed as either incapable or unwilling to work. Those who work are perceived as incapable employees, while those who are unable to work are viewed as lazy. Social media monitoring is the product of that stigma as it relies on assumptions about how a disabled person should look and act. One individual I interviewed recounted that when they sought advice on the application process people told them, “You can never post anything on social media of you having fun ever. Don’t post pictures of you smiling, not until after you are approved and even then, you have to make sure you’re careful and keep it on private.” Being unable to smile or outwardly express happiness ties to family and professionals underestimating a disabled individual’s quality of life. This underestimation can lead to the assumption that “real” disabled people have a poor quality of life and are unable to be happy.

The social media monitoring tool’s methodology relies on potentially inaccurate data because social media does not give a comprehensive view into a person’s life. People typically create an exaggerated, positive lens of their lives on social media which glosses over more difficult elements. Schwartz and Halegoua describe this perception as “spatial self”, which refers to how individuals “document, archive, and display their experience and/or mobility within space and place in order to represent or perform aspects of their identity to others.” Scholars on social media activity have published numerous studies on how people use images, videos, status updates, and comments on social media to present themselves in a very curated way.
Contrary to the positive spin most individuals put on their social media, disabled individuals actually feel compelled to “curate” their social media activity in a way that presents them as weak and incapable to fit the narrative of who deserves disability benefits. For them, receiving disability benefits is crucial to survive and pay for basic necessities.

The individuals I interviewed shared how such surveillance tools not only modify their behavior but also prevent them from exercising a whole range of human rights through social media. These rights are essential for all people but particularly for disabled individuals because the silencing of their voices strips away their ability to advocate for their community and form social relationships. Although social media offers avenues for socialization and political engagement to all social media users, social media significantly opens up opportunities to disabled individuals. Participants expressed that without social media they would be unable to form these relationships offline where accommodations for their disability do not exist. Disabled individuals greatly value sharing on social media as the medium enables them to highlight aspects of their identity beyond being disabled. An individual expressed to me how important social media is for socializing particularly during the Covid-19 pandemic, “I use Facebook mostly as a method of socializing especially right now with the pandemic going on, and occasionally political engagement.”Participants expressed that they feel like they need to modify their behavior on social media, with one participant saying, “I don’t think anybody feels good being monitored all the time and that’s essentially what I feel like now post-disability. I can’t have fun or it will be taken away.” This is fundamentally a human rights issue.

These human rights issues include equality in social life, and the ability to participate in the broader community online. Long-term these inequalities can harm their human rights as their voices and experiences are not taken into account by people outside of the disability community. In many reports on the disability community, the majority consensus rests on the fact that the exclusion of disabled people and their input undermines the well-being of disabled individuals. Ignoring or silencing the voices of disabled people prevents them from using their voices to advocate for themselves and participate in decisions involving their lives, making them vulnerable to disability discrimination, exclusion, violence, poverty and untreated health problems. For example, a participant I interviewed shared how the process reinforces disability discrimination through behavior modification:

There was no room for me to focus on anything I could still do. Because the disability process is exactly that, it’s finding out what you can’t do. You have to prove that your life sucks. That adds to the disability shame and stigma too. So anyways, dehumanizing.

In addition to the social and economic rights mentioned above, social media monitoring also impacts the enjoyment of civil and political rights for disabled individuals applying for and receiving Social Security disability benefits. Richards and Hartzog write, “Trust within information relationships is critical for free expression and a precursor to many kinds of political engagement.” They highlight how the Internet and social media have been used both for access to political information and political engagement, which has a large impact on politics in general. Participants revealed to me that they used social media as a primary method for engaging in activism and contributing to political thought. The individuals I interviewed shared that they use social media to engage with political representatives on disability-related legislation and to bring awareness of disability-related issues to their political representatives. Social media monitoring restricting freedom of expression can remove disabled individuals from participating in the political sphere and exercising other civil and political rights.

I am a disabled person who recently qualified for disability benefits, so I personally understand this pressure to prove I deserve the benefits and accommodations allocated to people who are “actually” disabled. Social media monitoring perpetuates this harmful narrative that disabled individuals applying for and receiving disability benefits need to prove their eligibility by modifying their behavior to fit disability stereotypes. This behavior modification restricts our access to form meaningful relationships, push against disability stigma and advocate for ourselves through political engagement. As social media monitoring pushes us out of social media platforms, our voices are silenced and this exclusion leads to further social inequalities. As disability rights activism continues to transform in the United States, I hope that this research will inspire future studies into disability rights, experiences applying for and receiving SSI and SSDI, and how they may intersect with human rights beyond privacy rights.

October 29, 2020. Sarah Tucker, Columbia University Human Rights graduate program. She uses her experiences as a disabled woman working in tech to advocate for the Disability community.