Social Security operates through a eugenic framework, dehumanizing people with disabilities and producing social death

Social Security and Social Death As Maxine suggested, disabled people often experience a negative feedback loop between how much society values disabled people and how they are treated (Cacho, 2012). Many participants brought up their perceptions of how they were viewed by society at large, and how this impacted and was influenced by the poverty conditions inherent in in their experiences of SSA policy. Cacho (2012) argues that through social and state-sanctioned processes, some groups of people - particularly poor, criminalized, and racialized communities, are rendered ineligible for personhood, their rightlessness is validated and naturalized, and thus they experience a social death. Cacho’s scholarship on social death continued to come to mind as I listened to participants grapple with their destitution, their sense of stuckness, and the contrast between the lives they lived and the stereotypes and stigmas they encountered as disabled adults receiving SSI/DI. An exchange with Reese exemplified how the concept of social death was evoked in these interviews despite the lack of any prompting questions in the interview guide: Interviewer: Do you have something you consider your biggest concern financially? Reese: Well, overwhelmed with shit I owe, but that’s still—I feel I’ve gotten to a pretty good space right now in terms of I know where to go to get the cheap food. I know where to go to get free produce. I’ve become incredibly resourceful based on a lot of things. Interviewer: Can you tell me a little about those strategies? Reese: Yeah, yeah, yeah. Well, you mean knowing where to go to get the produce, stuff like that? Interviewer: Yeah, in having a tight budget, how you manage to still survive. Reese: Good question. I don’t know if I was surviving this time. I mean, maybe I had a pulse, but I don’t think I was surviving. I don’t know. I don’t really know how to explain that descriptor, you know what I mean? Interviewer: Uh-huh. Like you weren’t dead but you weren’t alive? Reese: Yeah. Reese referenced a sense of feeling lifeless while still being technically alive, suggesting that the term “survival” ascribed more life than they actually experienced. Cacho (2012) argues that in the setting of American neoliberalism, people’s value is assessed through a capitalist and economic lens in which people who do not contribute to the labor market are devalued. This logic is affirmed by many aspects of SSA policy; including the bifurcation of disability benefit programs into SSI and SSDI, in which people who have not paid payroll taxes prior to becoming disabled are funneled into SSI, a program with even more limiting guidelines than SSDI. For people who were disabled since birth, their participation in SSI is all but destined by the time of their infancy, for the sole reason of their inevitable exclusion from the labor market. As is the case among other oppressed groups, such as undocumented immigrants, people receiving SSI/DI benefits have significant legal restrictions on their ability to work with high stakes consequences if they are caught working. Yet, since they still need to eat, this dynamic inevitably leads to working in underground economies which render them at risk of being exploited, underpaid, or abused due to lack of regulation and workers’ precarious and rightless statuses. Later in the same interview, Reese discussed the underground economies they had engaged in to make ends meet while receiving SSI and used similar language suggesting their sense of their own marginal existence: I mean, it has been more stable but still incredibly stressful because of the sort of, kind of—I feel like the world of hustling you have to do when you are at that low income is like so pushed underground that even, literally, like with statistics, it’ll be, like, you are 300 plus below the poverty line—not even below the poverty line; you’re 300 percent plus below the poverty line. It’s like you don’t exist, you know, so, like, a lot of our lives, I’d say, a lot of us are pushed underground to do a lot of different things. Reese describes a different sphere, or “world,” in which their poverty and available work opportunities are so extreme that they seem to disappear from the mainstream world, existing so far outside of social processes and laws that “it’s like you don’t exist.” In this way, the significant amount of work that people do to first access work and then engage in the actual labor meant that many participants were very hard workers. Yet, despite policy that forces them into risky and underpaid work, disabled people are often most stigmatized for their lack of work and contribution to society. Stevie voiced her concern over this dynamic and how it reinforced the devaluation of disabled working-age adults: Sometimes I feel like everybody thinks like, oh well you just like being disabled. Like I even had somebody say, oh, it must be nice to be disabled. You guys just sit at home and collect the check. Okay: One, no, it's not [laughs]. And don't act like the check we collect is like a million bucks. It's like bare necessities, dude. But the fact that society feels that way - it's maddening to me and makes me sadder too, because it's like how am I gonna get this across not only to the people that made the law, when you can't even convince mainstream society that you're worth a piece of shit, you know what I'm saying? Everybody in society is like, ‘Oh, you're disabled.’ Like they just kind of discount you. The minute they say disabled, you could just see it on their face. Stevie recounted a common stereotype of disabled adults, that they are somehow profiting off of disability checks and that they are not working and therefore lazy and worthless. She also connected the fact that the general public has this perception with the political reality that lawmakers seem to be driven by these misconceptions, showing the linkage of devaluation and poor treatment of disabled people in social policy. Several other participants discussed a similar frustration with how they are perceived, and how different it was from their actual experiences of hard work and poverty. The notion that disabled people are somehow gaining an unfair edge on society from their social position, such as in the receipt of SSI/DI benefits, is widely explored in disability studies literature on the “disability con.” First coined by Samuels (2014) and later applied to the SSI/DI application experience by Dorfman (2019), the disability con refers to fear of disability deception among fantasies that disability is a tangible, observable, feature of humanity that can be regulated, with fakers and the truly disabled clearly demarcated and classified as such. Participants in the study encountered fears of the disability con in the many benefit systems they navigated, constantly having to produce evidence, receipts, and their own deference to maintain access to benefits. As if constantly on the defensive, many participants would introduce damaging societal beliefs that they were subjected to in order to present their alternative views of reality. Victoria expressed her frustration with the perception that disabled people get something for nothing, not only harmful for their stigmatizing effects but also for the denial of her reality in the daily bureaucratic grind: I'm not somebody who's looking for a free ride. Never was. You know, there are people who have a perception of those of us on benefits as, ‘Oh, yeah, they just -- I wish I could get paid for doing nothing.’ Like, yeah, live in our world for about 30 seconds and then talk to me about that. I don't think those people would last a day. Adding an important caveat to the protestation that people on SSI/DI do in fact work, Reese reminded me that the neoliberal value of assigning worth based on work productivity was in itself reductive: Because there’s only one type of way to be productive in society and contribute, and that is by working a job that pays a paycheck into a certain thing. Plenty of people contribute work and aren’t compensated. There’s plenty of different types of work that aren’t valued and respected as work but they’re still working. Many participants were actively engaged in their communities in a number of ways from doing community organizing, to volunteering at their churches, to making art, and engaging in public education campaigns. Many were also engaged with each other in disability community spaces, as will be discussed further in Chapter 6. Reese claims a seat at the table along with other prominent critical disability studies scholars in critiquing an overemphasis on access to the workforce without questioning the currency with which neoliberal value is accrued. Yet, many SSA policies operate under the assumption that in order to promote work amongst SSI/DI beneficiaries, beneficiaries must be assessed for desire to participate in the workforce and then aided on an individual basis to rejoin it. The Ticket To Work program, analyzed in this lens, is antithetical to the national labor market and the mixed economy welfare state. Several participants spoke about their experiences on SSI/DI with a similar skepticism of the possibility of truly supporting disabled people when operating within a capitalist system. Often in these conversations, the line between biological death and social death was blurred as participants questioned the motives beyond programs as restrictive as SSI/DI. Sam discussed the slow application process and the fact that disabled people often spent years without income or health insurance while they submitted appeals to the SSA: It's like that Audre Lorde quote, ‘we were never meant to survive,’ you know? And so I felt like I was up against a system that truly benefits by me not surviving. You know, if I don't survive while I'm on Social Security, they no longer have to make a payment. If I die before I get a Social Security decision, they don't have to make a payment. Sam’s concerns about the impacts of lengthy application periods are supported by research that suggests that longer wait times are correlated with lower income, likelihood of being uninsured, and increased medical issues (Coe et al., 2013; Prenovitz, 2020). Sam, like other participants, perceived the SSA as using a ruthless and utilitarian approach to disability benefits. Their experiences with SSA involved such denial of personhood, that the leap to assuming that the system did not care if they lived or died was not a large one. Participants who brought up these concerns tended to be people who were engaged in activism of any sort and who had evidently spent time seeking to understand why SSI/DI programs operated as they did. Tili was among these participants and clearly explicated why she saw SSA in a eugenic framework: I guess I just want to say that it’s clear to me and all of the disabled people I’m friends with and who rely on Social Security as their main means of income, it’s incredibly difficult to be approved for this benefit. People die during the waiting process. They make it incredibly hard to be approved. If you do get approved, they make it incredibly hard for you to be able to live on the amount of money, poverty wages. It keeps people trapped in poverty and it’s a way of slowly killing people, and I do know disabled people who have died waiting to be approved for Social Security. I know people who have died because they needed to turn to survival work while they were receiving their benefits. The system was designed, I think, to kill people. We deserve better. Tili’s perceptions of SSI/DI reveal a complete lack of trust - not only in SSI/DI as programs, but in the motives of the SSA itself. The fact that several participants used explicit language of death or murder to describe their view of these programs, and that none of these observations were prompted by explicit questions, was striking. It suggests that the cumulative effects of navigating SSI/DI policies, interacting with street-level bureaucrats, and playing the game with multiple public bureaucracies, which are all features of the Social Security model of disability, take a significant psychic toll on beneficiaries. While there has been little research to date on the nature of psychosocial impacts of SSI/DI on beneficiaries, existing critical disability studies frameworks and theorizing on the disability experience through the perspectives of capitalism and the labor market align with participants' accounts of feeling invisible and devalued (Longmore, 2003; Puar, 2017; Russell, 2019). Conclusion The findings described in this chapter are an important empirical contribution that show how oppressive social security policy coupled with administrative burden can result in undesirable shifts in individuals’ life trajectories; sense of self; experience of stigma, role in society; and experience of social devaluation. Taken together, these experiences make up the Social Security model of disability. Through personal and community experience, knowledge of the literature base, and theorizing, participants have portrayed the “economic violence” wrought on those excluded from the labor market as a form of state-sponsored debilitation, akin to Social Darwinism (Russell, 2019). The psychosocial sequelae of living on social security disability benefits are important to consider in exploring the beneficiary experience as they characterize the quality and nature of life that people experience as they make ends meet. Participants’ experiences also highlighted out SSA policy that devalues disabled people influences negative societal perceptions of them in a process akin to Cacho’s (2012) social death. This negative feedback lops can have an iterative effect on disability policy and disabled people’s relationships and sense of themselves. Lipsky describes a segment of this process in his discussion of the moderating effect of street-level bureaucrats: In another sense, in delivering policy, street-level bureaucrats make decisions about people that affect their life chances. To designate or treat someone as a welfare recipient, a juvenile delinquent, or a higher achiever affects the relationships of others to that person and also affects the person’s self-evaluation. Thus begins (or continues) the social process that we infer accounts for so many self-fulfilling prophecies (2010, p. 9). Considering these ripple effects, it is not surprising that social policy defining disability in contradistinction to engagement in the workforce could lead to negative social- and selfevaluations of disabled people in a capitalist labor market. Still, the motivation for policy change to improve disabled people’s material lives and disrupt the “benefits trap” only grows when considering the psychosocial and societal effects sequelae of current policy that might shift, in turn.