Posting a selfie in a cute bikini on a beach in Hawaii to Instagram or sharing protest pics on Twitter shouldn’t be grounds for being denied disability benefits, but if an expansion of social media surveillance at the Social Security Administration goes through, that’s exactly what could happen.
An Instagram story from a low-pain day or a Facebook post with an old photo might be used against an applicant for disability benefits, a change from the status quo where the agency only looks at social media in cases of suspected fraud. Thanks to a New York Times story suggesting a tiny line item in the agency’s 2019 fiscal year budget overview will turn into a real policy, the disability community is very worried.
All this for an agency with a “fraud incidence rate that is a fraction of one percent.”
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The proposed expansion of social media monitoring for the nearly 20 million Social Security Disability Insurance and Supplemental Security Income recipients would have several negative effects, among them that disability activists who organize and build community online may be hesitant to do so. It will also feed directly into myths about Social Security fraud that have been wildly overstated in media coverage, such as a 2017 Washington Post series or a 2013 NPR feature package that made it seem as though “undeserving” people were lining up for disability benefits. (The average monthly benefits are under $1,300; being on disability is hardly a profitable endeavor.)
Proposals like this one underscore the common belief that everyone applying for disability is fake until proven otherwise. “I hate the assumption that everyone’s lying just because they need help,” said Rachel Graves, a member of the chronic illness community who receives disability and private insurance coverage, and who is already very cautious about her online presence. Graves is well aware that social media is used to police disabled people online by the government and insurance companies, as well as the general public, who are all seeking out disabled people who don’t “look sick.”
In response to the news, Mila Johns, who has Ehlers-Danlos Syndrome, a connective tissue disorder, deleted her Facebook account and plans to scale back on Twitter: “It seemed like too big of a risk to take by continuing to engage in social media. Because we don’t know how it’s going to be used.” Johns relies on communities found through sites like Facebook and Twitter to connect with people who share her diagnosis. “[Social media is] a lifeline for so many people,” she said, but she’s preparing an application for disability benefits, and she’s worried about what examiners might find, and judge.
The internet is valuable for outreach and advocacy, but also activism. Online organizers have used social media to fight attacks on the Affordable Care Act, organize in defense of the Americans with Disabilities Act, and engage in solidarity actions with other marginalized communities. Disabled advocates such as Imani Barbarin, creator of hashtags such as #AbledsAreWeird and #ThingsDisabledPeopleKnow, and Alice Wong, founder of the Disability Visibility Project and one of the co-partners of #CripTheVote, rely on social media for their work.
Images of disabled protesters went viral in 2017 during the fight to preserve the Affordable Care Act. Those same protesters now get to worry about whether those pictures will be used against them to deny or revoke disability benefits; if you’re well enough to occupy the halls of Congress, surely you’re not “really disabled.”
The agency already has an entire trained investigative division that focuses on preventing fraud before it even happens, in addition to following up on complaints about current beneficiaries. It also uses predictive analytics software to flag suspicious activity among both applicants for and current recipients of disability benefits. (Like other uses of predictive algorithms, this has dangerous implications, requiring applicants and recipients to submit to the surveillance state’s collection and use of their data. Algorithmic bias is also a significant concern.)
Now, in addition, the new proposal would allow thousands of front-line “disability adjudicators” all across the country to conduct their own fraud investigations using social media data. These are the staff charged with determining whether a claimant meets the agency’s stringent criteria for disability benefits.
– Mila Johns
On average, they are not very accurate.
In 2016, disability adjudicators approved 33 percent of initial disability applications and denied the other 67 percent. Claimants whose applications are denied have the right to appeal and have their case heard by an administrative law judge. After waiting one to two years to have their appeals decided, 46 percent of claimants are ultimately found to be disabled by Social Security.
In other words, nearly half of the people whom disability adjudicators rule as not disabled are actually determined to be disabled when they have their day before a judge.
In this climate, it’s easy to understand why disabled people might be afraid, and the consequences of curtailing social media engagement can be immediate and painful. “It is so isolating being really sick, especially when you have something unusual enough that you don’t know anyone else who has it. To find someone like you can make you feel less lonely,” said Graves.
The proposal also aligns with a long history of claiming that programs like SSDI and SSI are rife with “fraud.” For those concerned about fraudulent applications, the Social Security Administration maintains a fraud hotline and encourages not only workers, but also law enforcement and members of the general public, to report suspected disability fraud, in a “see something, say something” approach that encourages people to inform on each other.
This is the dangerous crux of the proposal: It will have a silencing effect on disability advocates at a time when they have won several high-profile victories with the assistance of online organizing, such as helping to prevent the repeal of the Affordable Care Act. Expanding the use of social media in disability determinations could become punitive in nature, with poorly-trained adjudicators dealing with large caseloads making snap judgments about applicants, particularly those with outspoken political leanings. Disability activists who don’t “look disabled” or have variable experiences of disability, such as part-time wheelchair users, could pay a high price for leading public lives.
The proposal can be operationalized administratively, without Congressional action, though Sens. Sherrod Brown (D-OH) and Bob Casey (D-PA) have expressed concerns about it. But it will make the internet less safe — especially for people like Johns who are primarily or entirely homebound and use it as a vital tool for participating in society. And it will make organizing harder for a fractured community that’s currently relying on the internet to help with the fight against dangerous, disablist policy proposals on the state and federal level.