Providing for ‘Sick Enough’ Citizens

In the fourth chapter of Petryna’s Life Exposed: Biological Citizens after Chernobyl, the author reflects on how illness from radiation began to redefine social and economic expectations of workers in the Ukraine. She brings up many topics including that of the ‘sick role,’ a sociological concept from the 1950s (pg. 89).

Petryna presents the struggles that the government has had in defining what is ‘sick enough’ for social benefits, especially after the transition to an independent democracy and the subsequent economic crisis. I found this discussion very interesting, as I think it is applicable internationally even in non-disaster affected locations. Regardless of where in the world you live, governments can only support so many people in this ‘sick role’ at a time.

Take, for example, disability benefits in the United States. While the Social Security Act has a strict definition of ‘disability,’ a growing number of cases seemed to be decided at a doctor’s discretion. In this article, Joffe-Walt spoke to a Dr. Timberlake about how he decides on disability status.

“We talk about the pain and what it’s like,” he says. “I always ask them, ‘What grade did you finish?'”
What grade did you finish, of course, is not really a medical question. But Dr. Timberlake believes he needs this information in disability cases because people who have only a high school education aren’t going to be able to get a sit-down job.
Dr. Timberlake is making a judgment call that if you have a particular back problem and a college degree, you’re not disabled. Without the degree, you are.”
 
This concept of relative disability is an interesting one and can tie back into Petryna’s ethnography, as she discusses how certain jobs are rewarded more liberally for the danger of radiation exposure. Of course, that pattern seems to be the opposite of what Dr. Timberlake suggests, with the wealthier and more skilled workers receiving the most benefit. Ukraine did face a different situation with regards to corruption and bribery in requesting and receiving medical compensation. However, the issues for a country surrounding people not being able to work due to illness – or at least saying they cannot – is the same.

The example in the NPR article of Scott Birdsall is indicative of this. Scott became unemployed and, after a while of searching for a job in vain, he went on disability for heart bypass surgery that he had had done previously. While imperfectly analogous to the Petryna reading, both the NPR article and the readings show how such programs, though necessary, are large contributors to the national debt of their respective countries.

Questions to consider:

What is a solution for these strained services – stricter guidelines on who receives benefits or something else?

What point, in this regard, did you feel Petryna was trying to make? And if you feel she was trying to be neutral, how successful do you feel she was?

8 thoughts on “Providing for ‘Sick Enough’ Citizens”

  1. Really interesting blog post, Shannon. I think you drew attention to the pervasiveness, and the international nature, of the problems that Petryna discussed in her work.

    In response to your first question, I don’t think stricter guidelines are the solution to these strained services. Increased regulation might make it more difficult for those who truly need the services to receive them. Taking an example from Petryna’s work, as I was reading I was struck by how many people “worked the system” in an effort to make financial ends meet. I felt very unsettled by that — that the the system could be so corrupt and broken that the people that truly needed help weren’t getting it, and the people that had the right connections, and the means to draw upon those connections, were the ones that benefitted the most. Do you think that stricter guidelines would create a similar situation in the United States, or is it the Ukraine’s unique economic situation that is the causative factor?

    Also, your blog post made me wonder about our previous class discussions that drew a line between an individual’s medically diagnosed disease, and an individual’s lived experience with illness. I think Dr. Timberlake’s disability diagnoses are very much in line with the illness side of things — mainly, how are these health problems affecting this person’s every day life? Would stricter guidelines discount this more holistic understanding of disease? And, if so, is it right for a government or similar power to decide which diseases qualify as “sick enough?” What would be the measure used to assess the severity of different diseases on a disability scale?

    Certainly, as it stands there are many issues associated with the safety net of disability. I can’t think of a better way to deliver these services though, without completely disconnecting from an individual’s experience with their disability, which I’m not sure is the most humanistic approach.

  2. Hi Shannon, thank you so much for your blog post. The first thing struck me when I read your post was the different perspectives we have. When I read the that chapter, “limited resources” didn’t appear to me as the major problem inflicting human suffering. Rather, I was more concerned with how the standard is so fluid, flexible, random, and arbitrary, that human lives seem so worthless. When I am always too quick to side with the subaltern, it’s always good to be reminded that it’s simplistic to view the “other side” as evil. That is tied to your second question. I don’t think Petryna remains “neutral” in this book, nor does she attempt to in my opinion. At least in the several other works by Petryna (or Biehl in that matter), she clearly has an agenda in mind as an anthropologist. One of the major themes in a lot of her works including Life Exposed, is that how multiple political, economic, and social forces render people at the lower end of the socioeconomic spectrum powerless and suffer as a consequence. In some ways, she already picked her side with the “people” and against the “state.”

    She didn’t do that as an angry activist who acts solely on compassion without reason, however. While criticizing the corruption, she also points out Ukraine is economically unstable and underdeveloped, which may lead to human suffering of the poor even when the state isn’t particularly “at fault” for anything. For instance, some victims, as Petryna says, refuse to leave contaminated zone because there is no way to get jobs or assistance if they leave. In this case, we can’t really hope the state responsible for what is actually the working of global capitalism.

    Another point I want to raise is that, true, resources are limited. Even for the wealthiest nation-state, it is still impossible to support everyone who makes a claim for social benefit. However, Petryna through her nuanced ethnographic writing shows us, what is more horrendous is not that there aren’t enough resources for the sufferers, but the process of selecting who deserves help and thus life, is highly corrupted, random, and unfair.

  3. Thank you for your post Shannon.

    I think you raise some interesting points about how people are evaluated to receive certain kinds of services and care. Indeed, this is something I have been thinking about a lot over the last few classes, and something that has been coming up in our discussion in various ways. There are decision being made about who does and does not get care. These decisions are made based on certain ways of valuing and evaluating the potential recipients of care. These ways of valuing and evaluating are shaped and informed by a number of different factors including, economic forces, national historical events, politics, systems of care, religious views among many many others. I think disability provides us with an opportunity to think about this in a different way because of how disability is so broadly conceived and can be a marker for so many different kinds of impairments or debilities. They are often divided into the categories of physical and cognitive impairments, and even as we have seen instances that do not fit neatly into that divide. There is also often spectrums of disability.

    The examples you provide us and from the readings attest to the fact that often the kinds of decisions being made on the reception of care or certain kinds of statuses, are made with ambiguous standards of evaluating. This ambiguity, to me, reflects the space where all the various factors mentioned above come to play.

    So I am not sure how to assess neutrality in this kind of case, or determine the best set of standard, but I think it is worth thinking more about whether or not neutrality is possible, or if standards could ever be discrete enough to make these determinations.

  4. Hi Shannon, thanks for the post! As we’ve established, disability status is something that must be legally assigned to an individual in order for them to receive benefits. As showcased in Petryna’s book, evidence and proof of this disability must be gathered and presented to bureaucratic authorities. Something that I think Petryna could have interrogated further in her book is: how do individuals feel about being labeled “disabled”? Do these individuals self-identify as disabled, or do they use a different terminology, a different conceptualization of their bodily state. How is “sufferer” different from or related to “disabled.” I found it noteworthy that Petryna never uses the word victim in her book. Was this intentional? Does it reflect a rejection of victimhood that perhaps her participants expressed? This also reminded me of a tension that exists in the Deaf community regarding the Americans with Disabilities Act. Many Deaf individuals reject the disability identity, yet they recognize the employment benefits available to them under the ADA. So, they begrudgingly accept the state-imposed label of disabled in order to be adequately accommodated in the workplace. I realize I didn’t answer either of your questions here, but I think it’s useful to deconstruct what disability means to different interlocutors within the state apparatus.

  5. Thanks for this interesting post. I think that this reflects a sort of interesting commentary about the social contingency of decision-making and the discretionary power of physicians. In considering the medical guidelines for disability in a strictly rational, bureaucratic sense, health professionals are meant to diagnose legal categories such as disability on a factual basis. However, as your example shows, this is never the way that decision-making happens in real life. In real life those in the authoritative position, or the gatekeepers, use their discretionary power to determine who can gain access to certain resources. Gupta’s argument in the introduction to “Red Tape,” about the ability of bureaucratic practices to become the threshold between life and death are particularly relevant here. He finds that in many countries, such as India in this care, this discretionary power of the person in authority can be the difference between making live and letting die. In the same way Petryna is making an argument about access to social and health resources and citizenship claims in the Ukraine. Those who are able to present themselves as legitimate, biological citizens, are those who are able to navigate the system of care, and thus ensure their survival. In doing so, she makes an argument that includes individual agency, as successful biological citizens are those people who are attempting to posit claims that reflect the narratives necessary to ensure recognition and care by the state.

  6. Hi Shannon. You present a very interesting but difficult question to answer.

    I do not think that Petryna is offering a solution to this dilemma. She is presenting the Chernobyl incident as an example of how the Ukraine inherited/ altered their compensation system as a way to further distance itself from the Soviet regime and outline how the new republic responded differently than the USSR. Petryna dissects how treatment of Chernobyl-related conditions is an undemocratic process. She is critical of the “corruption” or exchange relations that take place within the bureaucratic apparatus. She highlights how the “intermediaries of state assistance” which are physicians, military leaders, engineers, contractors that worked in the Zone, etc. play an important role in defining who is registered as “suffering”. With this said, people that have connections to others within the administrative process are able to tap into these resource banks that are in charge of disseminating services and they can position themselves to gain access to more incentives.

    I can imagine some reasons why it would be difficult to repeal or cut back on their compensation schemes even though it is very apparent that these are unsustainable models and something should be done (this is my ethnocentric view). The Ukraine is already having a very difficult time distinguishing who is and who is not “suffering”. Its full disclosure approach created pockets of very scientifically literate individuals that know the language to navigate the system. Defining who has legitimate membership or deserves compensation for their disabled/ damaged bodies will be further politicized and undermine the public accountability that the Ukraine initially sought to build in order to distinguish itself as separate from the USSR. In the wake of solidifying its national autonomy, the Ukraine attracted and embraced foreign assistance in the form of technologies, trade partnerships, and loans. I imagine that the state’s relationship with these money-lending organizations might change if they reduce or expand their categories of “sufferers” because they have a stake in defining what lives are expendable and what bodies are worth investing in as were noted in some of our other readings this week.

  7. Thank you for sharing the NPR article. While I could surely see the similarities between how disabilities are bureaucratized in the U.S., and how they are institutionalized in post-socialist Ukraine via the distribution of disability welfares, I also think the Ukrainian case that Petryna depicts fundamentally differs from the situation in the contemporary U.S: In the Ukrainian context, the Soviet government caused the incident that led to the massive amount of claims for disability benefits. The provision of disability benefits, thus, could almost be interpreted as a means by which the government diffuses responsibilities and deflects blames for its own wrongdoing. I wonder if this distinction contributes to the formations of different kinds of biological citizenships in the U.S. and Ukraine?

    I also think your question about whether Petryna assumed a neutral position when writing the book is interesting. As you might have already noticed, in anthropology, concepts such as neutrality are incredibly convoluted and contemporary anthropologists typically refuse to evaluate the “objectivity” of an ethnographic work. On the other hand, I often find myself judging the merits of an ethnography based on my perception of whether it offers a “fair” or “balanced” account. I think this relates to Yifeng’s comment last week about “getting it right.” Are we so fragmented as a discipline that we no longer have agreed standards upon which to evaluate ethnographies. Or do we still somehow uphold the value of “getting it right”? But, really, what does it mean by “getting it right”?

  8. Thanks Shannon. Your post reminds me of an interesting anecdote. A friend of mine who works at a big tech corporation knew of a colleague that had been fired for bad performance reviews. This colleague actually suffered from cancer and because of his inability to go to work regularly and dedicate himself to his work while receiving treatment, he was categorized as the bottom 3% of the company and summarily dismissed. In a way, we can think of the cooperation like a government. Keeping this person on board, even though he did have special circumstances, would detract from the profit of the company. However, to fire him, in my opinion, seems slightly inhumane given his circumstances.

    This example, related to the ones you posed, show us just how difficult these decisions are. In fact, they are ethical, and they really get us to question, what are our priorities. Not just as a company, but as a country, and as a people. Should we most generously reward productivity and the ability to produce? As I have heard a lot from immigrants to the US, “America is a good place to work but not die.” There seems to be a natural reaction in this country to “put people aside” when they cannot produce. The type of language we use too (and in the case of the more mobile and middle-upper class urbanites in Petryna’s book), “they are a drain on our economy,” touches on the intimate links between capitalism and understandings of disability.

    Perhaps, the way we talk about disability and illness needs to be changed. And the way we prioritize finances. Of course, as Petryna shows, such regimes that attempt to provide justice to those suffering may not always do so well. However, that doesnt mean the project isnt worthwhile.

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