End-of-Year Reflections

January 24, 2021

2020 is a year that has stood out to me since I was small. I always anticipated that I would go to college right out of high school. I calculated that if I finished in four years, I would be graduating college in the year 2020. My whole life was mapped up until that point (or so I thought), and it made perfect symbolic sense to me: 2020, a symmetrical number with an alternate meaning of perfect vision. A year where I would see, with eyes unclouded by obligation, my path forward in this life. My purpose would unfurl like grass in the wind, and dance me into money, progress, success and community. What I couldn’t have anticipated was that 2020 would bring a different sort of clarity. That, through the horrors of a global pandemic, a veil would be lifted to reveal the roots of my suffering and also my comforts in a way I had only imagined before. It would magnify the scaffolding of racism, patriarchy, and compulsive heteronormative monogamy that holds global capitalism in place, that holds all of our lives in place, in hierarchy and in compulsive individualism, consumption, and violence. Through the challenges that this year brought, a different sort of path forward began to take shape.

I began the year as a fourth year undergraduate student enrolled in Dr. Jenny Reardon’s “Sociology of Health and Medicine” winter course. It had taken me almost 3 years to decide what my major was going to be. After frequently shifting between the English (creative writing), Anthropology, Sociology, and Critical Race and Ethnic Studies departments, I finally settled on Sociology and was excited to be taking a course that explored the intersections of health and society. I have had a long interest in healing practices and somatics because of my own experiences with illness and injury. I was excited to expand my awareness of how deeply social determinants of health inform our different embodiments, and how our positionality in society gives us differential exposure to disease/pollution/trauma, as well as access to healthcare. As the COVID-19 pandemic grew, and as our class tracked its impact, it was clear how its impact was unequally distributed across racial stratifications, proving much more deadly for Black and Brown communities in America than for white folks. We saw how existing disparities in health stemming from the racist foundations of our capitalist, settler colonial nation state were exacerbated in a situation of crisis. We also began to see various forms of community mobilization responding to the overlapping crises of the moment. As our own response, the Science & Justice Research Center, led by Jenny Reardon, developed a course and a fellowship program to encourage student led research about COVID-19 and its impact in real time. What follows are my reflections on this project thus far, and ideas for how we can bring it into the new year with a more capacious approach to the kinds of knowledge we are uplifting.

This project consisted of student led qualitative research, a course, interviews, a blog, and a podcast series. The majority of our content came from these interviews with scholars in the SJRC’s existing global network. I learned so much and was so excited to have the opportunity to get the perspective of experts from various fields. If one thing stood out it’s that, however devastating, this pandemic is not all that surprising, and that SARS-CoV-2 is a symptom of deeper, long standing issues.

Moving forward, we are excited to have the opportunity to talk with folks outside of academia. If we are going to look at racial disparities in COVID, then we should talk to the people who are being most affected. Therefore, if we are going to continue talking to scholars, we can prioritize non white scholars. I am also interested in talking to those in the elder care sector, either working as in-home carers or in nursing homes. My grandmother is living in an assisted living facility for older people in Colorado and it came to my attention recently that the workers there are completely overlooked in terms of the unique burdens they are facing. It may be more obvious that the elders are overlooked as well. The intense isolation of this population during this time lends itself to the already persistent abjection of older people in this country, and to the culture of ageism that upholds it. Another angle of interest would be researching the ongoing impact of COVID in communities experiencing houselessness. Part and parcel of this is looking at the extensive mutual aid networks that are functioning during this time to get people situated with the resources they need when local and federal governments fail to do so (see, for example, Dean Spade’s inspiring new book on mutual aid). This angle allows for us to open space up for us to explore the essential work of visioning, art making, and imagining towards more liveable futures, as this is integral to mutual aid.

COVID-19 Conversations with Dr. Kim TallBear and Dr. Jessica Kolopenuk

June 8, 2020

The SJRC has been conducting interviews with scholars and community members from our diverse network to try to understand and highlight some of the ways in which they are responding to COVID-19. Last week I had the opportunity to co-interview Dr. Kim TallBear and Dr. Jessica Kolopenuk, scholars and professors at the Faculty of Native Studies at the University of Alberta. They are the co-founders and principal investigators of Indigenous Science, Technology, and Society (STS), a research training program based out of the University of Alberta that seeks to “promote Indigenous self-determination” by supporting Indigenous led techno-scientific innovation and ways of inquiring and producing knowledge that support Native peoples and their communities (https://indigenoussts.com/). Among other things, we talked about what a “productive embrace of crisis” looks like, how Indigenous people are positioned well to embrace crisis in such a way, and how we might move forward and “live well together on stolen land” (TallBear & Kolopenuk, personal communication, 15 May 2020; unless otherwise noted, all quotes in this post come from this interview).

Dr. TallBear’s research focuses on the integral role that notions of race and Indigeneity have had in shaping genetic sciences, as well as the role of technoscience in both colonization and, increasingly, Indigenous governance. Her book, Native American DNA: Tribal Belonging and the False Promise of Genetic Science (2013) looks at how genetic sciences that purport to be able to genetically identify races may pose threat to Native American sovereignty and claims to land, resources, and their own history. She also writes and speaks widely on decolonial sexuality, and co-produces a project called “Tipi Confessions”, which is described on their website as a “performance laboratory” that incorporates spoken word, storytelling, music, burlesque, erotic fiction, and more into shows about gender, sex, and sexuality informed by decolonial and critical sexuality studies (http://tipiconfessions.com/). Dr. Jessica Kolopenuk’s research also centers around Indigenous people and genetic sciences, focusing on how 21st century biotechnologies are still steeped in the same, unequal colonial power dynamics that define our current political, scientific, legal, and social orders. The core of her work is Indigenous self-determination, which she seeks to foster through Indigenous STS as well as her own research (https://indigenoussts.com/principal-investigator/co-pi-dr-jessica-kolopenuk/).

When asked about the role of Indigenous STS in the context of this pandemic, Dr. TallBear noted that Indigenous people are situated in such a way that engenders a particular “productive embrace of crisis”. Dr. TallBear noted that there has been less lamentation of what is happening in the Faculty of Native Studies as compared to the rest of campus. She says, “We are spending less time lamenting the old world. We’ve been lamenting our old world for hundreds of years, this is just another major transition.” Both Dr. TallBear and Dr. Kolopenuk attributed this to the fact that, as Indigenous people, they are used to crisis: “I don’t mean to be cliché, but I think it’s true, Indigenous peoples often come from communities and families that are living in crisis half the time. This is just another crisis, it’s a big crisis, and it hurts, it’s not like it doesn’t hurt our communities, but my mom once said to me, Native people are best in crisis, we just start organizing.”

In this case, they are organizing with the Faculty of Native Studies and two other faculties on campus to create an online minicourse called “Indigenous Peoples and Pandemics” that will be open to the public this summer. Usually, Indigenous STS hosts a training internship program called SING Canada in the summer that is “designed to build Indigenous capacity and scientific literacy” (https://indigenoussts.com/sing-canada/). It is a “collaborative co-thinking project” designed to train indigenous genome scientists “in the service of Indigenous communities having governance and cultural authority over the kind of research that happens in their communities.” Because of COVID-19, this year’s SING Canada program was cancelled, and in its place the minicourse is being developed. The course will integrate public health, biology, epidemiology, history, sociology, and more for the purpose of understanding how pandemics have affected Indigenous communities throughout history and in this moment, emphasizing that “for Indigenous peoples, epidemics and pandemics have always been syndemic with colonialism and colonial settlement.” They hope to integrate it into a larger course that will be offered at University of Alberta next winter.

In her article “Caretaking Relations, Not American Dreaming” (2019) published last spring, Dr. TallBear cites “making kin” as a potential “creative alternative to nationalist assertions of inherent sovereignty” and to narratives of progress toward a “multicultural” future that neglects Indigenous people and histories of dispossession all together (TallBear, 2019). During our conversation, I asked what “making kin” might look like generally and in the context of COVID-19.  Dr. Kolopenuk, who is Cree, Peguis First Nation, commented that the history of her people is deeply intertwined with the history of Scottish settlers, who they sided with over the Métis people. Because of this, “making kin with settlers” has always felt normal to her. Dr. TallBear’s experience, as an enrolled member of the Sisseton-Wahpeton Oyate, and having been raised on the Flandreau Santee Sioux reservation in South Dakota by her mother and grandmothers, was different. She was “uncomfortable” at first when she moved to Canada and found that the history of Indigenous/settler relations was seen as a history of kin to kin, in addition to a history of treaties between sovereigns. She soon realized, however, that regarding treaties as a “desire to draw people into kinship relations” might be the “only way to live well together on stolen land,”

One of the ways to achieve this is through language revitalization. As Dr. TallBear noted, “It is hard for us to think about better ways of living together in a language that is so incredibly violent…so built around binaries and moral absolutes.” Dr. Kolopenuk gave the example of learning what the word for newcomer or foreigner is in the Indigenous language of the territory you are occupying, and figuring out what kinds of relations you are drawn into with that understanding. For example, the Tsimshian people of the pacific northwest coast’s word for strangers translates to “driftwood.” What role does driftwood serve in this particular area? How can understanding this help us to understand how we can embody our roles with grace and consideration for the people who were here before us, and who remain? Dr. Kolopenuk stressed that making kin is not about disavowing settlers and the US settler nation state of our history of genocide and land theft. It is not about charity, or the “strategic operationalization of virtue.” Rather, it is about challenging ourselves to imagine and develop ways of relating and coexisting that culminate in greater respect for and commitment to the land and First Nations.

We also talked about how we can apply this tactic of making kin in acknowledging our relations to the more than human, such as the virus, SARS-CoV-2, that causes COVID-19. Rather than using the dominant war metaphor to talk about SARS-CoV-2 as a foreign enemy we must beat, how can we recognize it as a being with whom we have co-evolved, or with whom our relatives (bats and other animals) have co-evolved? What implications does this have for shifting our responses? Dr. Kolopenuk made the point that the history of our evolution has been a history of relations, of “evolving with viruses and bacteria” and that often “one often can’t live without the other.” How can we shift the focus away from the virus as the source of pathology towards the conditions created by industrial capitalism, as an arm of the settler state, that have rendered us vulnerable to the spread of zoonotic disease in the first place? A vaccine will do no good if we don’t also take seriously the role of deforestation, industrial meat farming and agriculture, and more in boosting our vulnerability to a virus like SARS-CoV-2. Another virus will just appear. After all, there will be no ‘end’ to the COVID-19 pandemic, the virus will stay with us just as most viruses do. We must challenge ourselves instead to find ways of “living with the virus” that include reframing our relations to each other, the land, and to other beings.

TallBear, Kim. (2019) “Caretaking Relations, Not American Dreaming” Kalfou. 6:1

Re-Worlding in the time of COVID with Mesiah and Little Wind

May 13, 2020

At this point, it is clear that COVID-19 is changing our world forever. Headlines from almost every major media outlet tell us how the future of travel, education, fine dining, work spaces and more will look entirely different. Images of glass dining pods and social distance playground games overwhelm our imaginaries of how things could soon be. However, at the edge of this precipice, we must be careful of what kind of world we collectively envision and work towards. How can we avoid reproducing and reinscribing the same harmful systems and relations that rendered our world particularly vulnerable to a pandemic of this nature, and to the disproportionate effects it is having? As Naomi Klein has shown us, “in times of crisis, seemingly impossible ideas become possible” (Klein, Democracy Now, March 19 2020).

How can we go beyond focusing on glass dining pods and social distancing methods for cubicles, towards more capacious conversations about the nature of our global situation and how we got here? Is it possible to imagine and fight for a world where relations of care are central, and all lives are equally valued? Can this world exist in the context of the persistent colonial power relations, racialized hierarchies, and massive wealth inequality that characterize our current situation? Thinking about the so-called United States specifically, my work centers the importance of decolonization, as action not metaphor, as it is grounded in mutual aid organizing and long term visions of BIPOC (Black/Indigenous/ People of Color) organizers (Tuck & Yang, 2012). I believe that an equitable, liveable world is not possible within the context of a settler colonial nation state where racist vigilantes are able to murder black men for running, and Mashpee Wampanoag reservation land is able to be revoked in the midst of a pandemic. We must decolonize. Because of this, I am choosing to center the work of individuals who are doing community centered, frontline organizing with a goal of “healing the land and healing ourselves” (Mesiah, personal communication, May 4 2020)

This week, I am focusing on the work of Mesiah, 24, and Little Wind, 23, two Indigenous youths who are engaged in a vital project of providing COVID-19 crisis relief to hundreds of families on Wind River Reservation in Wyoming, all the while keeping their eyes strongly fixed on the horizon. As Mesiah noted in our conversation, COVID-19 felt like a door opening into a space where they could “implement some of their greatest ideas” to liberate their community from structures that were never built to support them (Mesiah, personal communication May 3 2020). Their work is connected to the broader legacy of mutual aid in BIPOC lifeways prior to capitalism and colonialism, and in struggles for life and liberation under the eventual racialized, colonial, capitalist world order. As Regan De Loggans writes in a zine titled “Let’s Talk Mutual Aid” this legacy is one of “Indigenous lifeways and sovereignty, Black thrivance and power” (De Loggans, 2020). Mutual aid is a long term commitment to the safety and viability of the community beyond the crisis of COVID-19 and into the crisis of capitalism in the everyday.

Born and raised between the Bay Area and New York, Mesiah identifies as Afro-Indigenous and Two-Spirit. Little Wind is Northern Arapaho and was born and raised by their mother and grandmothers on the Wind River Reservation in Wyoming. After meeting at Standing Rock in 2016, they began organizing together and are now partners, leading this essential work while deeply rooted in love. The following is based on a lengthy conversation I had with them over zoom earlier this month, where we talked about their work right now and how it will extend into the visions of future sovereignty and sustainability they have for themselves and their community.

Little Wind and Mesiah began organizing in early March when they realized that many of the people on the reservation would not have the ability to shelter in place if asked to do so because of high levels of scarcity. In Little Wind’s words, they wanted to “show up big” for the grandmothers and grandbabies who were in imminent need (Little Wind, personal communication, May 3 2020). Aware that the situation at Wind River was unique, and that there was no information specifically curated for their community to understand their predicament, they took matters into their own hands and began developing a survey to assess the situation.

Beginning around March 22nd, they began distributing a survey which included questions about pre-existing health conditions, how much food and potable water was already in the home, what was needed and in what quantity, etc. The data they collected showed that almost 70% percent of households who filled out the survey have someone with a pre-existing health condition that renders them more vulnerable to contracting the virus. Little Wind emphasized that “these diseases were introduced to us,: and that their great great grandparents had not known conditions like kidney disease or cancer to such a degree (Little Wind, personal communication, May 3 2020). Their survey also included forward facing questions such as whether they have access to running water and land to plant food, or whether they would use seeds if provided. Their survey was intentionally modeled this way to collect data that had the longer term in mind. They immediately received a flood of responses and in the following weeks provided essential resources to 300 households, doing all of the shopping, sanitizing, sorting, and delivering. They fed around 2,600 people in total with stores to last a month.

Their plans to continue their work beyond this imminent crisis and towards tackling “the challenges that keep our people dependent on the system” include developing educational centers for youths on Wind River Reservation to learn about the extraction that is going on on their land, the conditions that have rendered them vulnerable to poverty and disease, and what they might be able to do about it. These spaces are not just to foster radical education, but also sustainable forms of support. They want to encourage a more radical vision of solidarity, one that does not assume that Indigenous communities can not and do not organize for themselves, but that asks academics and organizers to orient their work toward justice as articulated by Indigenous communities themselves, not the agenda of the academy or the left wing. They want to open a water center, and continue to fight against extraction that poisons the soil, so that they might be able to provide seeds to those wishing to grow food, and be free to care for the land and each other again. Linked below is their fundraiser, where I encourage anyone who can to donate and contribute to their efforts, both right now and in the long term.

https://fundly.com/regenerationonthereservation

Works Cited

De Loggans, Regan. “Let’s Talk Mutual Aid” Online Zine. Accessed May 2020. https://dochub.com/rloggans/jo3xELpR3ZO8yz8wJBa7nr/loggans-mutual-aid-zine-pdf?dt=Ls_myQXhz6RrrzS59DVW

Tuck, Eve. Yang, Wayne K. “Decolonization is not a metaphor” Decolonization: Indigeneity, Education, & Society. vol. 15, no. 1, 1996.

An Intersectional Narrative of Two Epidemics

June 14, 2020

COVID-19 is not the only epidemic sweeping America, and it certainly is not the only public health emergency threatening the lives of millions. Accidental drug overdose is the leading cause of death in Americans under the age of 50, exceeding fatality rates of gun violence and car accidents combined. Opiates, a sedative substance for pain relief, account for the bulk of these overdose-related deaths. This social and politically neglected reality is known as the opioid epidemic. The opiate crisis derives from the nationwide misuse of and addiction to prescription painkillers, illicit opiates, and synthetic forms of opioids. Importantly, with implications for public health practice, the opioid epidemic has largely been framed as a ‘white epidemic’.The crisis has resulted in substantial rates of accidental overdose, hospitalizations, and mortality, killing an average of 130 Americans a day. The opioid epidemic is a preventable social problem that has been thrown on the back burner of legislation and public awareness for years, and its collision with COVID-19 will plague those struggling with substance abuse in the United States at an unparalleled level. 

The novel coronavirus is a life-threatening viral infection with a fast-moving fatality rate far greater than seasonal flu. Patients with serious cases of COVID-19 experience side effects that include persistent coughing, wheezing, shortness of breath, chest pain, fever, and fatigue. Little information presently exists on COVID-19 and it’s interaction with opiate users, however, it is clear that there is a dangerous link between the two. The use of opioids create unrealistic feelings of euphoria but cause very real, physical side effects such as sedation, respiratory depression, weakened immune system, and a lack of oxygen to the brain. Because the coronavirus attacks the lungs and respiratory system, high-dosage opiate users are susceptible to detrimental repercussions due to impaired lung capacity and slow levels of breathing. On average, more than two million Americans misuse opioids. With that being said, this information suggests that more than two million youth and adults in the U.S. are a high-risk group of severe illness to the virus.  

COVID-19 has universally disrupted lives amidst nationwide quarantine and the enforcement of shelter-in-place laws. Social isolation is key to slow the spread of the virus, however, social distancing is a privilege that many current drug users and reformed addicts cannot afford. Addicts and former users rely heavily on the solace of support groups, such as AA or NA, and other socially supportive environments for recovery, maintaining sobriety and preventing relapse. Social isolation, disconnection, and drastic changes in routine increase the chance of overdose and places recovering users at risk of relapse. In light of COVID-19, active users are faced with obstacles on account of the closure or restricted hours of needle exchange operations and treatment facilities. Individuals already undergoing addiction treatment that are reliant on Methadone, a replacement pain reliever used to treat opiate use disorder, are faced with similar complications. The only way to receive Methadone is through specific methadone clinics that require in-person drug testing and daily monitoring of medication. Although alternative guidelines were enabled to permit prescription fills for two to three-week intervals, these methods have been inconsistent. Witnesses from a Minneapolis methadone clinic reported waiting rooms packed with patients and long queues extending in and outside of the facility. These backward attempts not only exhibit restrictive healthcare access and broken treatment systems but also place immunodeficient users and staff members in a state of vulnerability. Efforts to contain the virus and flatten the curve are necessary, but these tragic circumstances will reinforce and spread the flame of the opioid epidemic like wildfire. 

Americans facing COVID-19 have, and still are, experiencing radical losses of income, mass and long term unemployment, fears of contracting the lethal virus, and a fundamental, bleak hope for the unprecedented future. Millions of substance abusers, former addicts, and even non-addicts might be inclined to self medicate with drugs or alcohol in order to cope with pending fear and socioeconomic unease brought upon by the pandemic. The National Institute on Drug Abuse states that “environmental and social stresses are an important predictor of many mental disorders and these stresses increase the risk for substance use and even make the brain more prone to addiction”. It is imperative to note that the opioid epidemic disproportionately and overwhelmingly attacks individuals with insecure housing, poor education, criminal charges, inadequate or lack of healthcare, and those of low socioeconomic status. An investigation conducted by The National Institute of Health found that individuals living below the poverty line represented 24.6% of opioid overdose deaths, in which only 11.7% were alive by the study’s completion. All of these socioeconomic factors contribute not only to the risk of addiction but to contracting and spreading COVID-19. Similar to the opioid epidemic, the coronavirus affects individuals from all walks of life but largely threatens low-income communities with a lack of economic mobility and medical care. Although necessary, it would be all too easy to point blame on prescribing practices and inadequate treatment and prevention without first looking at the existing social disparities. 

The coronavirus pandemic has revealed fatal flaws in our for-profit health systems, just as the opiate crisis has unveiled systemic class discrimination and social disparities of healthcare.  It remains to be seen how racial issues play out in the government and public health responses to the opioid epidemic, branded as a ‘white problem’, and the pandemic for which ample evidence exists that the novel coronavirus is hitting many communities of color in the U.S. drastically harder than majority white communities. These inconsistencies are not not a result of biological differences but are in fact due to structural racism. 

The government worked rapidly to initiate an urgently needed COVID-19 response, meanwhile, Congress and State Legislatures dawdle in addressing the opiate outbreak which has plagued the country’s disadvantaged for years. The intersectional narrative of these two epidemics is sheer proof that in the United States, financial standing and social status, and, often, racial classification, are the deciding factors of one’s quality of life or imminent death. It is of the essence that we raise the standard of care, implement strong safety nets, diversify accessibility, and provide healthy conditions for all communities and the generations to come. This is the moment to take collective action.

The Global Medical Supply Chain, Neoliberalism, and COVID-19

June 2, 2020

The coronavirus has challenged the immunity of millions worldwide, and the global medical supply chain is certainly not immune to the toll of COVID-19. In practice, the global supply chain is a worldwide network of companies that distribute, trade, and purchase goods and services transnationally in order to maximize profits and meet global demand. Universally, countries across the map are heavily dependent on the global medical supply chain for preventive supplies and affordable pharmaceutical drugs. China ultimately dominates the entire global medical supply chain with a firm grip on the world’s production and administration of raw materials, such as active pharmaceutical ingredients (API), for drug manufacturing. If this wasn’t enough cause for concern, China is also responsible for the majority of the world’s international trade of personal protective equipment (PPE), such as face masks and other hospital gear. India is, similarly, a leading force in the world of medicine and the global medical supply chain. At the head of the generic drug market, India is the world’s largest provider of affordable, effective, and unpatented pharmaceuticals. Both developed and developing countries are contingent on India’s relatively cheap exports, however, India is likewise reliant upon China’s shipments of APIs and raw materials in order to manufacture these highly-demanded generic drugs. The world depends on these cost-effective exports of drugs to combat COVID-19. The global medical supply chain has been relatively successful, however, COVID-19 proved that the dependency on a single country for medicine and supplies can result in cataclysmic events that threaten both the health and economy of every nation across the globe.

A global pandemic hand-in-hand with a faulty supply chain is a recipe for disaster, posing the risk of material shortages and limitations on the capacity to produce and distribute worldwide. On the eve of 2020, the deadly coronavirus was initially reported to have emerged from the province of Wuhan, China. In order to manage the outbreak, China prompted strict quarantine restrictions and the closure of dozens of chemical plants and factories across the country. Not only did China’s lockdown halt work for millions, but the abrupt closure of these manufacturing facilities impeded the production of APIs. Amplifying this horror, international travel bans and China’s prohibition of COVID-19 PPE exports hindered the shipment of supplies overseas. Without their safety net, India was subsequently left to scramble for other sources and traders. In preparation for potential drug shortages and preservation of domestic supply, India’s Ministry of Commerce and Industry banned the export of masks, sanitizers, and 26 pharmaceutical products. Since then, China’s manufacturing chains have returned to usual operations and India sequentially lifted their bans on overseas shipments. Despite the return to original procedures, however, moral panic due to COVID-19 has raised concern over the underlying insecurities behind our global supply chains and the driving socio-political ideologies that support them.

Neoliberalism, the leading force behind the world’s social and economic ideologies, favors free market capitalism, market deregulation, lower trade barriers, and the limitation of state power. Neoliberal ideologies that support the global medical supply chain serve with the intent to increase market sales and maximize overall profit revenue. Ironically, neoliberal approaches to commodify health and healthcare systems inevitably give rise to defective institutions and weakened global health at a substantial cost. Dr. Owain Williams, an expert on the political economy of health policy and access to medicines, elaborated in my recent interview with him that COVID-19 has exposed both neoliberalism and it’s interaction with the pandemic as well as aggressively exposing fragility in collective faith in the market as a means of distributing and allocating resources. The global supply chain is just one example of these faulty cracks of free market neoliberalism. During a pandemic, global medical market failure is imminent as high demands couple with limited supplies and stock shortages.

Dr. Williams stated that, “the neoliberal heartlands are where governments have failed the most spectacularly”, such as in Brazil, the United Kingdom, and the United States. State sovereignty is crucial for economic stabilization, however, “all of these countries have unravelled, because the role of the state has eroded . . .and our redistribution mechanisms are completely broken”, Williams disclosed. Dr. Williams’s hope for the future is that “we as people, not the government, will use power to negotiate a new settlement” for the economy, for the climate, the people, and so on. The return of a well-resourced state, reallocation of taxes, and administration of new social welfare programs are imperative. COVID-19 has shown that the global supply chain is a ticking time bomb. The only way to put out the fuse is to reexamine the systems in place and arrange a settlement that prevents PPE rationing, avoids drug shortages and eliminates transnational vulnerability. Instead of pinching pennies, figureheads and policy makers should invest patience and money toward domestic drug manufacturing and the federal office for global pandemic preparedness. The world was unprepared to deal with the novel coronavirus but, with clear evidence of preventable market failure, there is no excuse to not begin preparing for the next pandemic.

Pharmaceuticals, a Vaccine for COVID-19, and Questions of Equitable Access 

May 13, 2020

The global pandemic of COVID-19 is something that has never before been seen in recent history. CEPI, the Coalition for Epidemic Preparedness Innovations, is a company established by the Bill & Melinda Gates Foundation that finances independent research in developing vaccines for emerging diseases and centralizes on pandemic preparedness in low and middle-income countries (LMIC). In wake of the COVID-19 pandemic, CEPI has worked rapidly to raise over $924 million dollars dedicated to the development of a vaccine for the virus. CEPI has its own equitable access policy which states to ensure that LMIC’s will have equal accessibility to vaccinations and treatments created by the company just as developed countries do. Many manufacturers do not see CEPI’s equitable access policy as reliable in competitive business models without guaranteed financial gain or intellectual property rights. In December 2018, however, CEPI revised its philanthropic policy most likely in response to pharmaceutical industries’ unwillingness to collaborate on a partnership. The revised equitable access policy no longer guarantees the promise of affordable vaccine prices and takes zero accountability to investors. Because the profit returns are not large enough to warrant any investment,  pharmaceutical companies are not as open or willing to invest in drug manufacturing in developing countries.

Pharmaceutical industries do not endorse rare diseases, or orphan diseases, that affect less than 200,000 people by the US medical standards. Expanding on this definition, the title of orphan diseases is also named for common diseases in developing countries, such as tuberculosis (TB), HIV/AIDS, or malaria, which large pharmaceutical companies neglect to treat and research due to their lack of pervasiveness in developed countries. According to WHO,  “tuberculosis, HIV/AIDS, and malaria together account for nearly 18 percent of the disease burden in the poorest countries”, most of which are in Africa, South East Asia, and the Western Pacific. The disheartening fact of the matter is that all of these diseases are preventable and can be combated with existing medicines from developed countries and pharmaceutical industries, especially when granted orphan drug status to treatments and candidate vaccinations.

The emergence of the COVID-19 pandemic, however, has shown that in disaster situations, normal protocols are not being followed. In March 2020, for example, Gilead requested and was subsequently granted orphan drug status by the FDA for Remdesivir, a potential treatment for COVID-19. The Orphan Drug Act of 1983 was signed in order to combat and fund research and development for rare diseases observed by the FDA, such as Lou Gehrig’s Disease or Tourette’s Syndrome. This title would ultimately limit competing manufacturers from developing generic versions of the drug, would guarantee tax credits for development, and ultimately grant Gilead the power to name their own price. COVID-19, however, is in no such way an orphan disease seeing that it has been confirmed to have affected over one million people in the US and nearly four million people globally. After a public uproar, Gilead has since then revoked Remdesivir’s status as an orphan drug. During this emergency basis, it is clear that normal protocols are not being followed. Major pharmaceutical manufacturers may still be profit-hungry, but perhaps COVID-19 will change the status-quo direction of compulsory license options.

COVID-19 may prove whether or not CEPI will follow through with its promises of equal accessibility to deliver a non-patent vaccination, challenging the usual business approaches of Big Pharma. Medical innovation is crucial for the development of a vaccine to COVID-19, however, global accessibility to ensure aid is given to every person in need is even more critical to slow the rapid circulation of the virus that has reached every corner of the globe.

End-of-Year Reflections

January 24, 2021

The overall thread connecting the issues we discussed in the podcast was how COVID-19 is exacerbating inequalities that are a legacy of a colonial past and a present that thrives on racial capitalism. I think our future episodes should encourage people through participatory praxis in addition to providing accurate information from a scientific journalism angle and guiding questions for critical reflection. I’m confident that a longer run time will allow us to include more information with the allowance of different segments. Part of the KZSC mission statement is to serve the community. To accomplish this maybe we can include local resources in future episodes. We can more fully advertise where we can be reached so that we can get feedback on what we are doing well and what can be improved. With a longer run time we can use what we learned from scholars as a lens through which to see what organizers are doing at the present moment, creating the possibility of including two interviews per podcast. I think in terms of communities, a lot of the scholars we interviewed were white so in the future we should be more thoughtful of including more folks from the BIPOC community. I think interviewing only scholars limits us. There are many people doing important work and although they haven’t been validated by the academy, their voices should be heard.

There is no one solution in creating an agenda for social justice. That’s the beauty of this podcast: everybody is able to find their own solution in their respective fields. I think collaborators can be found through the SJRC network and through folks in the organizing scene. One question to ask future interviewees is: is there anyone else you think we should talk to? For funding we could apply for grants in science journalism or even include a donation button on the website. My goal as part of the SJRC team is to make scientific information accessible and engaging. It’s to arm people with information that makes a difference and provides tools for critical thinking. As News and Talk Director, my goal is to forge an ongoing connection with the SJRC, since it provides opportunities for students and people interested in communication to work with a team and fine tune their skills. It also provides a space for possible funding opportunities. As someone who comes from a lower income background, this is important. One of the reason’s I wasn’t able to participate in certain media groups on campus is their unrealistic time demands for someone who needed to work to afford schooling. Providing a career guiding space, especially for first gen folks is important. A new institutional practice needed is validating people’s knowledge and community knowledge even if they haven’t been in higher education. Furthermore, being ok with asking for clarification. Talking to scholars can sometimes feel intimidating and admitting lack of knowledge is hard. Yet, knowing that people listening would also have your same question may make asking for clarification easier. Also, sometimes our language can get very abstract because we have learned that this is how we get our ideas recognized as worthy. It’s important to be mindful when this is happening and bringing it back so that the information discussed is accessible to more folks. Sometimes as researchers in a certain field we get so hung up on details that we forget the why. In the All My Relations Podcast (shout out to Isa* for the listening recommendation),  Kim TallBear** said, “the goal of research is social change” and I couldn’t agree with that more.

*Isa Ansari is a core team member of our Pandemicene Project and is a recent graduate from the sociology department at UCSC.

**Dr. Kim TallBear is Associate Professor on the Faculty of Native Studies at the University of Alberta and is a co-founder and principal investigator of Indigenous STS.

Exposure Notifications, Digital Contact Tracing, and the Burden of Responsibility

June 2, 2020

Apple and Google have rolled out mockups of what they are coining “Exposure Notifications.” The goal of Exposure Notifications is similar to digital contact tracing in that their goal is to curb exposure to the public from a suspected or confirmed patient. The type of tracing proposed by Apple and Google is Proximity Tracking, which would use Bluetooth to track an individual’s exposure to cases. As noted by the CDC, bluetooth digital contact tracing needs to be widespread for it to be effective. The shift from naming the technology Digital Contact Tracing to Exposure Notification is interesting to note. The friendlier sounding “Exposure Notifications” suggests that Apple and Google understand many Americans’ feelings towards privacy and are trying to appeal to the general population to promote widespread usage of this API. Furthermore, whereas digital contact tracing is part of a multi-pronged approach and requires resources with which to follow up, Exposure Notifications can be free of these expectations.

Digital contact tracing is part of a series of steps to help curb exposure and Exposure Notifications shouldn’t be understood as a stand-alone solution. We recently conducted an interview with Professor Joan Donovan, faculty at Harvard and Director of the Technology and Social Change Research Project at the Shorenstein Center on Media, Politics and Public Policy. Prof. Donovan expressed concerns that: “Contact tracing is another one where technology isn’t going to be effective without humans who can explain to you what it means to be exposed and what your risk is, and can talk you through where it might have happened.” Here Prof. Donovan outlines the importance of human labor in the functionality of digital contact tracing. According to the CDC, in order for contact tracing to be effective it “will need to be linked with timely testing, clinical services, and agile data management systems to facilitate real-time electronic transmission of laboratory and case data for public health action.” Yet, Exposure Notifications end at alerting someone they may have been exposed to COVID-19 and includes only minimal follow up. While alerting an individual of potential COVID-19 exposure is important, the question becomes what resources will be provided for someone exposed and who will be responsible for the follow up? Exposure Notifications shift this responsibility on the individual.

Prof. Donovan went on to explain that digital contact tracing, if not done effectively, may further deteriorate public trust in experts during a pandemic. Since cell phones can detect Bluetooth signals through walls, with Exposure Notifications people may be alerted despite not having been exposed, giving rise to false positives. This may lead to further skepticism of the immediacy and danger of the virus. Prof. Donovan expressed concerns about the implementation of digital contact tracing without the proper follow up, “Without a robust infrastructure for talking to people about what you’re getting notified about, it’s going to be in a huge disaster…We also know the other part of this, which is that to have been in the same place and someone doesn’t necessarily automatically lead to infection, there’s going to be a lot of questioning. There’s going to be again another round of skepticism and inquiry that we need to be ready for and we need to be prepared for and we need to be able to answer people’s questions.” Looking over the Apple and Google’s  Exposure Notification Blueprint it becomes obvious where the limitations lie: in the follow up. Exposure Notifications place the burden of responsibility on the individual. This is a myopic fix because lowering infection rates goes beyond the individual, it requires many parts of the public health system working successfully in conjunction.

Privacy During a Pandemic: Digital Contact Tracing and Technosolutionism

May 13, 2020

Early last month Google and Apple announced a joint effort to use digital contact tracing to aid in slowing the spread of COVID-19. They’ve recently announced a mock-up of what the digital contact tracing software would look like and are optimistic about being able to roll out this new technology later this month.  According to the CDC, Contact tracing is meant to support a patient with confirmed or suspected illness through tracing the people who they’ve had contact with. The people who have been in contact with the patient are alerted, advised to maintain social distance, and track their symptoms for 14 days after last contact with the patient.

So far, the CDC has proposed two types of tracking using digital devices. The first is Case Management, which will capture data on cases and contacts. The goal is to use contact information to notify and follow-up with an individual who may have been exposed. Secondly, they’re proposing Proximity Tracking which would use Bluetooth or GPS to track an individual’s exposure to cases. It would require community wide adoption for proximity tracking to work effectively.

Yet many are weary of digital contact tracing as part of a“technosolutionsim” which places a tremendous amount of faith in technological solutions without considering repercussions on the most marginalized. “Efficient” has become a dog whistle word which allows Silicon Valley to operate without traditional checks. There are several obstacles facing the implementation of digital contact tracing.The most pressing is the effectiveness of contact tracing given the lack of testing available. The CDC has outlined contact tracing as a multi-pronged approach, and without widespread testing digital contact tracing is a meandering in the direction of a solution instead of a coordinated approach toward controlling the spread of COVID-19. Furthermore, there’s the issue of false positives. The proposed apps will be using Bluetooth, and because cell phones can detect Bluetooth signals through walls, people may be alerted despite not having been exposed. Lastly, given recent debates staking market vs lives, will contact tracing be used to provide a false sense of security providing justification to open up the economy before it is safe to do so?

In an upcoming blog post, we will take a deeper look at the app proposed by Apple and Google to understand the merits and pitfalls of adopting digital contact tracing into our daily lives. We will further explore the “why” in the creation of this app. Is digital contact tracing an effective solution, or is it Silicon Valley guilt appeasement? More information on understanding the logistics of this app, as well as the importance of balancing public safety and privacy during a pandemic will be available in forthcoming blog posts.

End-of-Year Reflections

January 24, 2021

My work with the SJRC for this year boils down to one important question: how can we implement principles and concepts of philosophy to guide us to more ethical decision making in the realm of this pandemic? Are there frameworks that can guide our decision making, or must we begin creating these frameworks ourselves? The greatest strength and weakness of this pandemic has been its propensity to reveal great systemic cracks within our institutions- not to say these cracks didn’t exist beforehand, but rather to emphasize that we can no longer use ignorance as an excuse to not address these inequities. We interviewed professors and doctors, hoping to gain insight into their imaginations of how a world should operate during these times, and raised a plethora of ethical questions that more often than not left us both in contemplative quietude.

This work is not finished- it has barely scratched the surface of what philosophy and sociology can reveal and answer for us. Perhaps the most important principle to follow is that it’s OK to not know the answers to these questions, and maybe the only framework we can use when trying to tackle solutions to institutionalized issues is simply turning to what we already know. I want to take advantage of the power of multiple and varying perspectives in that perhaps the solution to these issues lies not in the sole perspective of an ethicist, or a healthcare professional- but rather a fusion of both.

The goal of my pursuits is learning how we all must cope, adapt, and persevere. To truly break out of the constraints of our thought processes and imaginations of how this world should carry on. Too often we truncate the boundaries of our thinking and imaginations based on the perceived constraints of our world- my goal is to inspire thinking and new questions that go beyond these socially constructed limitations. Science and Justice must be communicated not as mutually exclusive entities, for it is in their very union which an abundance of enriching perspectives, new knowledge, and more opportunities to expand our thinking and understanding of the world arise. I want to employ this same principle to guide future endeavors- that perhaps the most valuable source of knowledge lies in the intersections of what was previously irreconcilable.

Reconciling the Irreconcilable Disparities in the Healthcare Industry

(June 2, 2020)

As we are now adapting to life alongside the coronavirus, it is clear this virus is not simply a one hit wonder. Governments across the world are now enacting policies anticipating the inevitable realities that this virus is far from over, policies that hope to reshape the way we organize and function within a society. Though once we looked at ethical frameworks solely within the scope of public health institutions, with a society gearing to run alongside this novel virus, we must pay attention to the various dilemmas that shall form through and around it.

Healthcare triage protocols have been outlined and framed by many reputable organizations including the CDC, the U.S Department of Health and Human Resources, and more. What we haven’t paid attention to are the various ethical ramifications that fall outside the scope of ventilator access and available ICU beds.

Rana Zoe Mungin, a 30-year-old African American middle school teacher from Brooklyn, died in late April after repeatedly being denied testing for this new virus.[1] Her month-long battle echoes similar cases in the healthcare industry that affect Black people, including the case of Mungin’s own sister who passed from an asthma attack at the same hospital fifteen years prior.

Racial disparities in the healthcare industry are certainly not new to the Black community and communities of color. We have seen statistic after statistic outlining the racial disparities between white women and women of color during childbirth for years now, so these developments are far from surprising to the communities it has affected. However, it is critical we examine ethical implications from both within the walls of our healthcare facilities to outside of them.

Decisions on who gets access to ventilators is not simply the be-all-end-all of ethical healthcare frameworks amidst this pandemic. Comprehensively, we see ethical dilemmas resulting from contact tracing, testing, to even policies that frame responses by our institutions. In areas where we see shortages in healthcare resources, we also see shortages in testing. Where we see shortages in testing, and subsequently higher cases of the coronavirus, we also see greater concentrations of essential workers.[2] And it is clear which communities are the ones forced to do our essential work. The ethical dilemma chain in this country can be traced to system after system, industry after industry.

Frameworks are indeed illustrated by academics and government organizations alike in order to assist the burden being placed upon healthcare professionals. The problem with this methodology is exactly that- the burden is being placed upon healthcare professionals rather than universal standards agreed upon and implemented comprehensively. In areas most vulnerable to bioethics and human rights violations, we have seen UNESCO (the United Nations Educational, Scientific and Cultural Organization) adopt a Universal Declaration on Bioethics and Human Rights to be implemented in Kenya and Africa. Placing universal guidelines in these areas pushing for equitable and ethical frameworks for especially vulnerable populations is something we must look into in the wake of this pandemic. The U.S is at risk for breaches of bioethical violations, as the majority of ethical framework policies and decisions lie upon the hospitals themselves rather than universally agreed upon policies implemented throughout a region.  Disparities between racial groups, hospitals, and geographic locations should simply not exist within the realm of objective medicine. And women like Rana Zoe Mungin should not have to be the collateral damage of a country grappling with the now serious consequences of healthcare inequities we have been running from for years.

It is clear this virus as a virus can affect anyone, but funneled through the policies, systems, and institutions of this country, this virus is almost being directly aimed at communities most vulnerable and least equipped with necessary resources. Taking into account how ethical frameworks extend far beyond the walls of any healthcare institution, and the need for universally agreed upon standards for bioethics and triaging techniques is where we now must pivot our discussions. This country is now being directly confronted by issues that have been overshadowed, scapegoated, and outrightly ignored for years. It is time to act- not only for the sake of those in this pandemic, but for the sake of our future generations in crises to come.

[1]  Mitropoulos, Arielle, and Mariya Moseley. “Beloved Brooklyn Teacher, 30, Dies of Coronavirus after She Was Twice Denied a COVID-19 Test.” ABC News, ABC News Network, 28 Apr. 2020, abcnews.go.com/Health/beloved-brooklyn-teacher-30-dies-coronavirus-denied-covid/story?id=70376445.

[2]  “Data Show COVID-19 Is Hitting Essential Workers and People of Color Hardest.” ACLU Massachusetts, 8 Apr. 2020, www.aclum.org/en/publications/data-show-covid-19-hitting-essential-workers-and-people-color-hardest.

Bioethics and Equity-Based Frameworks Amidst a Pandemic

(May 13, 2020)

The ethical frameworks for dealing with a national pandemic hinge on both the adequate care of patients as well as fair and accessible treatment for all. Though these standards are indeed agreed upon by both health care workers and government leaders alike, where we see discordance is perhaps the implementation of these standards in a fundamentally unethical society.

A country built upon the tenets of capitalism can never truly carry out policies that go against the very nature of its own economic system. Built upon inequities and respective profits, the system serves to only benefit its own continuance. When faced with tragedies outside the scope of Wall Street, how can we have discussions about its ethics when those making policy decisions are concerned with and only with the recuperation of the economy rather than the people within it?

It is necessary when discussing ethical frameworks of a pandemic to recognize the ways in which our policies, economic systems, and institutions simply work in the favor of those in the 1%, and by definition, simply cannot do more than what they were built to accomplish. Class, race, religion, and gender all hold significant roles in determining exactly how you will be treated by this system, in general, and especially in a pandemic.

Already we have significant data revealing the deaths by COVID-19 as disproportionately affecting Black and Brown people across the country. As reported by ProPublica, “[in] Milwaukee County, Wis…. 81 percent of the deaths were black people. Black people make up only 26 percent of that county” (Social Distancing is a Privilege, Blow). The inequities faced by marginalized communities, whether by race, gender, or socio-economic status, bleed into every facet and system of this country. Regardless of policies enacted, mutual aid funds created, or op-ed pieces written, these inequities are inescapable.

It is simply counterintuitive to truly hope for a means in which this country can reform enough to fill in the gaps of these gaping inequities. Any discussion regarding ethical frameworks for pandemics, or any natural disasters/crises, must be contingent upon the fact that we can never create a response comprehensive enough to reconcile these inequalities.

Once we are able to start conversations that include these unequal implications regarding responses, can we truly and realistically develop ethical frameworks. Inequity is woven within our systems, and it is essential that we recognize this, and allow it to guide future responses to crises such as this.

The first step in potential reconciliation starts and ends with the very communities that  are targeted by the systems that we have put in place. In order to merge this gap, we must be putting all of our efforts and resources into the communities most vulnerable. The conversations must start with how we can extend access to those at the very bottom before allocating to those at the top. We must ask ourselves, who has a privilege of social distancing, getting tested, and receiving treatment, and shift our response plans to directly target those who do not have these privileges.

The myth that this virus affects all must be dismantled, and our responses must reflect this fact. If not, we will have to live with the fact that this country has and continues to take advantage of the unequal valuation of human life.