雷納德・戴維斯 (伊利諾大學芝加哥分校)
健全主義在平和時期戴著同情心的面具，如今對著失能者揭開它殘忍的面目。雖然有《美國身心障礙者法案》（Americans with Disabilities Act）這樣的法律認可身心障礙者的權利和主體性，但流行病的爆發帶來了一場規則更簡單、更致命的生存戰爭。有限的資源和急迫的檢傷分流，使得醫事人員必須迅速且近乎反射性地做出決策。要做出如此急迫的判斷，他們必須仰賴戰時本能，並且同時考量公衛倫理規範和成本效益分析，以評估誰的性命值得拯救，誰的比較不值得救。
任何用來分配有限資源的測量指標，都一定會落入優生學的陷阱。生命政治（biopolitics）和死亡政治（thanatopolitics）在此展現了他們乍看對立的一致性。置死與讓生的動力精巧地合而為一。為了救命，醫生必須放生。艱難的抉擇出現在每個國家、每間醫院裡的每個糾結時刻。蔓生的生死抉擇，使我們對於可以視為制度殺人——或甚至說制度屠殺——的情況，不再有情緒波瀾。
像舞台上的主角一樣，昏迷的病患和集中營囚犯吸引著生命政治和死亡政治的目光，而平凡的龍套角色，亦即有行動障礙或認知障礙的人，則幾乎得不到關注。就算失能障礙的研究者很清楚，這種龍套角色是由多數人指派給少數群體的，但是，現實生活中，失能者或聽障者還是每天承受共群與防疫的效應，而且無人知曉。
裸命（bare life）可以轉譯為各種身體或心理的狀態，但它很少包含，也不該包含一個族群，我稱其為常態失能者（routine disabilities）。排除牲人（homo sacer）這樣的行為，即使沒有歷史根據，至少有戲劇性；但社會性地和政治性地隔離失能者，這樣的行為則毫無看頭，卻更廣泛地在發生；即使是投身多元身份認同和解放的人，也會做出這種事。
全球流行病像一個熟練的剝製師掀開了歧視的表皮，尋找使之成形的不義骨架。現在，呼吸器似乎更容易取得（但只限於已開發的富有國家），也確認某些生命維持裝置可以發揮作用。在自由市場有限供給和擴大需求的觀點下，不僅是這類設備的價格攀升，每個人的文化資本（說到底就是這個意思）也決定他們能否獲得儀器、專業照護和技術人員。我說「每個人」，但實際上，尚在制定的規範正在將某些人劃為風險族群。我們可以看見年紀偏大的、有身體或認知障礙的人，沒有足夠購買力來獲得治療。那些有潛在狀況的（說明白點就是：失能），較不健康（意思是：和正常人相比）的人，也被分類了。
誰比誰更值得被拯救？醫學倫理學家（我故意用這個詞）試圖量化這個價值。世界衛生組織有個指標，叫做「失能調整生命年」（disability adjusted life year [DALY]）。這指標計算失能者損失的年歲，並和那些「理想」的健康民眾相比較。如此一來，你就可以計算你和我「失能調整生命年」之間的差距，然後看看誰的生命在這表上更有價值。目前計算出來美國一條人命值一千萬美元。在比較貧窮的國家，這金額可能跌到不值一提。
因為防疫等同戰場，所以檢傷分類一定要做，這成了合理甚至不證自明的事情。許多州採取這樣效益主義的準則，比如華盛頓州的官方準則就建議將資源分配給年輕、健康的民眾而非年老病人，因而引發失能團體抗議。阿拉巴馬州政府明示，智能障礙者「不大可能是呼吸器的提供對象」，而田納西州則把日常生活需要協助的脊柱肌萎縮症患者從重症照護中排除。如同對效益主義的社會和政治批判，有人可能會對「多數人的最大福祉」這論點感到懷疑。儘管效益主義哲學家的原典通常以經濟學原理為基礎，但現在的應用只是使用簡單的類比。疾病被轉換成關於健康的討論。大家都知道健康難以定義，但比較健康的病人優先。「健康」的意識形態充斥著健全主義所謂正常和不正常的概念。
失能者權利和教育保衛基金會（Disability Rights and Education Defense Fund [DREDF]）建議一種和效益主義不同的方法：「當病患的危急程度相當，提供醫療服務者應維持他們原有的『先到先得』原則，而不是將需要最少資源的病患排優先。」艾奇基爾．伊曼紐（Ezekiel Emmanuel）等人則在一篇刊載於《新英格蘭醫學期刊》（New England Journal of Medicine）的論文中表示，檢傷分類的事項中有陳舊的面向，而「危急時刻裡時間和資訊有限，不建議將病患未來的生活品質，和生活品質調整後的生命年（quality-adjusted life-years），放入利益最大化的考量。」有些人則建議抽籤，其中健康與否不影響機會。
在救命和放生的對決之間，只有一個輸家——有一種或以上失能的人，可以是老人、過重的人、有色人種、窮人。對，他們確實存在，但醫院高牆內的盤算基本是針對失能而言。種族是個重大要素，它和失能湊在一起， 加速優生學式的決策過程。當關乎誰能得救的議價最終選擇了看起來「正常」，而非那些弱勢的、不正常的、無力的、沒有資格的群體時，一切善良風俗、慈善活動、宗教關懷都要在此危急存亡的妥協之前土崩瓦解。有個詞描述這種人口統計方式，納粹狂熱地使用它：不值得活的生命（lives unworthy of living; lebensunwertes Leben）。T4計畫將失能者集中在設施中，以毒氣殺死他們然後焚屍，這成為位於波蘭的滅絕營屠殺猶太人和少數族群的樣版。將這些震驚世人、難以想像的死亡歸咎給納粹很簡單，但目前，衡量哪種生命比較值得活下去的演算法提供了一種平行對照，若這計算方式不是一種低調的屠殺，至少也讓人警覺其中的相似性。
某種意義上來說，討論健康的人就是在討論現代公民是如何形成的。就如傅柯（Michel Foucault）和其他人所指出，醫療系統的發展當然也是控制系統的發展。若系統運作良好，那就沒人會察覺它的存在——自我意志會讓系統運作無礙，毋需強制的規範。而這個醫療系統先前一直運作得很好，但現在「健康」這詞突然明確演變為一種談論權力和將一個群體置於另個群體之上的方式。如今，在必要時刻，法律的實施變得跟醫療指標攸關。簡單的思想實驗可以展現這點：選一個身份——性別、收入、種族——然後放進這個句子：「在大流行病期間沒辦法給（這種身份的人）住進加護病房」。雖然現在明顯的性別歧視、恐同、種族歧視，以及新自由主義的資本主義依然存在，但沒人會公開說這種話。但把「失能／身心障礙」放進這句子看看，在美國或世界上其他地方，這都不會有什麼尷尬或嚴重的後果。
隨著流行病來來去去，它的間歇起伏會持續影響人口和政策。雖然呼吸器的供應量可能正在改善，但若確診數量出現新高峰，這優勢就會消失。在我寫這篇文章的期間，德州正面臨醫院床位不夠的問題。南亞、拉丁美洲和部分非洲國家甚至無法確保和提供最基本的治療，包括呼吸器和氧氣瓶。要施打有效的疫苗的時候，為了盡快給全世界這麼多人免疫能力，我們會再一次看到短缺，以及決定施打分配的指標。如果群體免疫需要八成人口接受疫苗施打，那光是美國就要兩億六千萬劑（假設一人一劑），全世界的話就是六十億劑。一些問題像是成本（或說：藥廠的利潤）、階級（或說：全球北方對全球南方）和少數族群的位置，會變得很重要。我們將要面臨更多誰先誰後的生死決定。在這情況下，遲來的疫苗可能和沒資格打疫苗一樣意思。
如今，我們在諸如護理之家這樣的機構中看見，對健康狀況的歧視仍然存在。這些營利機構特別擅長做誰生誰死的決定。最近，護理之家開始趕走失能老年人，這樣他們才可以容納更多利潤較高的新冠病患。認知失能的病患染上新冠病毒後死亡率比其他病患高百分之2.5。運行其中的社會和醫療力量明顯將這些生命擺放在最低順位。在批判理論和社會正義擁護者認識到，人命的價值可能以這種形式被消滅之前，解放的方法都不會是完備的，也不可能公正。
流行病在全世界肆虐之際，我們可以看見，當醫院的工作量超載，「失能者的生命儀器和服務使用權」這個原先就存在的議題，已經升高到危機的等級。但有一個新的因素正在影響疫苗的取得權。雖然脆弱的族群，例如老年人，有慢性疾病，和免疫能力低下的人，通常有優先權，取得疫苗的機制卻深陷在網際網路的人造環境中，人們必須註冊以獲得疫苗。近來的報告顯示，在弱勢團體中也有特權階級，他們懂得使用政府和醫療官僚匆忙建立、不太好連上去的網站。由於美國至少有半數老年人沒有網路，還有許多窮人和有色人種只有有限的網路，大多數的疫苗都流向中產階級和富有的白人。因此，一種由科技啟發的優生學限制模型已經就位。時間或許可以消弭這個差別待遇，但根據現階段的趨勢——若我們可以修正埃斯波西托（Roberto Esposito）的公式——看來免疫（immunization）並不帶來共群（communitas）。
（註：本文前一版本曾於2020年6月26日發表於《批判探究》〔Critical Inquiry〕的部落格《此刻》〔In the Moment〕上。）
雷納德・戴維斯（Lennard Davis）
任職於伊利諾大學芝加哥分校，是英語系、失能研究與人類發展，以及醫學教育學系的特聘教授。他最近出版的是《賦能法案：關於美國身心障礙者法案如何讓美國最大的少數團體享有權利，你所不知道的故事》（Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights, 2016），也是《失能研究讀本》（Disability Studies Reader, 2013）和《失能研究入門》（Beginning with Disability: A Primer, 2017）的主編。
翻譯：黃冠維
校對：陳定甫
編輯：黃山耘
In the Time of Pandemic, the Deep Structure of Biopower Is Laid Bare
Lennard Davis
In regard to disability, the ableism that puts on a compassionate mask in milder times now reveals its brutal face. While laws like the Americans with Disabilities Act acknowledge human rights and subjectivities involved in disabled identity, a pandemic brings into play a war of survival whose rules are simpler and deadlier. Limited resources and pressured levels of triage create a situation in which medical decisions have to be made quickly and almost reflexively. When those kinds of pressured judgments occur, health practitioners must rely on a wartime gut reaction as well as a combination of health ethics templates and cost-benefit analyses assessing whose life is worth saving and whose is less so.
Any metric used for determining who should get limited resources will inevitably be drawn into a eugenics sinkhole. It is here that biopolitics and thanatopolitics display a unity which might have seemed to have been oppositions. The urge to let live and the urge to let die morph nicely into each other. In order to let live, doctors must let die. An unenviable choice arises at every tension point in every hospital in every country. This proliferation of life/death decisions blunts the emotional response to what might be seen as programmed executions or even annihilations.
While biopolitics and thanatopolitics have been drawn to dramatic personae like the comatose patient and the concentration camp prisoner, the more mundane bit players—the person with mobility impairments or the cognitively disabled person—barely get attention. Those in disability studies are well aware of this minor role assigned by the majority to the minority. Yet the actuality is that the disabled or Deaf person experiences the effects of communitas and immunity on a rather consistent and, to others, undetectable basis.
Bare life can be translated to equate with various physical and mental states, but it rarely includes, nor should it, people with what I might call routine disabilities. The driving out of the homo sacer seems dramatically if not historically sound; but the social and political sequestering of disabled people, while far less dramatic, is far more widely practiced, even by people whose goal is to be intersectional and liberatory.
Enter the pandemic which, like a skilled taxidermist, lifts off the skin of this kind of discrimination to find the invidious structural armature that gives it shape and form. Now there seems to be a greater availability of ventilators (but only in richer countries in the global north) and a realization that some other life-saving techniques might work as well. With a free market vision of limited supply and expansive demand, not only did the price of such equipment skyrocket, but the cultural capital, one must ultimately call it, of each individual determined their power to secure a machine, skilled nursing, and trained technicians. I say individual, but in reality, protocols were being developed to group individuals into risk groups. Those who were older, disabled both physically and cognitively, were seen to have reduced buying power to claim treatment. Those with underlying conditions (read: disability) who were less healthy (read: normal) were also to be triaged.
Who is worth more than whom? Medical ethicists, and I use the word advisedly, have tried to quantify this worth. There is a WHO metric called “disability adjusted life years.{DALY].” This measures years lost to disability and compares those years to those of someone in “ideal” health. One can calculate the difference between your and my DALY and see, in effect, whose life has more value. Currently in the US a human life is calculated to be worth ten million dollars. In poorer countries that worth could plummet to colonial chump change.
It may seem logical and even obvious that in pandemic settings, as on the battlefield, there must be triaging. Many states have adopted such utilitarian guidelines, including the state of Washington, cited in a complaint by disability groups because Washington’s official guidelines recommended giving limited resources only to younger, healthier people, not to older patients. Alabama has specified that people with intellectual disabilities “are unlikely candidates for ventilator support,” while Tennessee has excluded from critical care people with spinal muscular atrophy who need assistance with activities of daily living. As with the social and political critiques of utilitarianism, one might want to be skeptical of any “greatest good for the greatest number” argument. While founding texts of utilitarian philosophers usually grounded their arguments on economic principles, current applications fall prey to simple analogies. Disease is translated to discussions about health. Health is notoriously hard to define, but healthier patients become the priority. The ideology of health is deeply imbued with ableist notions of the normal and the abnormal.
In contrast to the utilitarian approach, the Disability Rights and Education Defense Fund [DREDF] suggests “When dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of ‘first come, first serve,’ rather than prioritizing people who would require the fewest resources.” Ezekiel Emmanuel and others, while recognizing certain well-worn aspects of triage note in the New England Journal of Medicine “Limited time and information during an emergency also counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.” Some have suggested a lottery system in which the health identity of the person is not a factor.
In the battle between letting live and letting die, there really is only one grand loser—the person with a disability or two. You can throw in old people, people who are overweight, people of color, poor people. Yes, they are there, but the calculus within the hospital walls is basically over disability. Race will factor in dramatically, and its combination with disability is an accelerant to any eugenic decision-making process. Social politesse, charitable involvement, religious concern all crumble in the face of the grand bargain of choosing those who appear “normal”—not those who are seen as weakened, abnormal, debilitated, less-than. There is a term for this demographic, and the Nazi’s used it with abandon Lives Unworthy of Living. The T4 Project, which gathered disabled people into institutions and then gassed and cremated them, provided the template for the death camps in Poland for Jews and other minorities. It is easy for us to blame the Nazis for these egregious and unimaginable deaths, but the current calculus about which lives are worth living provides a sobering if less overtly dramatic parallel.
In some sense, the discussion over the healthy person is a discussion about the formation of the modern citizen. As Michel Foucault and others have noted, the development of a medical system is of course also a system of control. If it works well, it is hidden and undetectable—powered by self-will rather than heavy-handed regulation. And the system has worked very well, until now when the evolution of the word “health” suddenly becomes more clearly a way of talking about power and setting one group over another. Enforcement now becomes a matter of medical metrics in a time of necessity. This can be shown through a simple thought-experiment. Choose any identity—gender-based, income based, race-based—and put it into the sentence “[People with this identity] won’t be given ICU beds during a time of pandemic shortage.” While there is still clearly sexism, homophobia, racism, and neoliberalist capitalism, no one can publicly make that statement. But include the term disability and the statement is being made without much embarrassment or consequence around the US and the world.
As the pandemic waxes and wanes, its tidal undulations will continue to affect populations and policies. While ventilators may be in better supply, a new spike in cases could counteract that advantage. Even now, as I write, Texas is facing a shortage of hospital beds. Countries in South Asia, Latin America and parts of Africa are unable to secure and provide even the basics for treatment, including ventilators, and oxygen tanks. When the time comes for an effective vaccine to be distributed, again we will see shortages—and metrics to determine distribution—in the push to provide immunity to a staggering number of people worldwide. If herd immunity requires 80 percent of the population to be vaccinated, in the US alone that would be somewhere around 260 million doses (if only one dose per person is required) and worldwide that would be six billion doses. Issues around cost (read: profit for the pharmaceutical industry), class (read: global north versus global south) and minority status will be crucial. There will more life and death decisions about who is first in line. In this case vaccine delayed could be vaccine denied.
And now we are seeing remnants of discrimination based on health status in institutions like nursing homes. These for-profit institutions are uniquely suited to make decisions about who lives and who dies. Recently nursing homes have begun evicting elderly people with disabilities so that they can bring in more lucrative patients with COVID-19. When cognitively disabled people contract COVID-19, they die at a rate 2.5 higher than other patients. The social and medical forces at work clearly have placed these lives at the bottom of lives worth living. Until critical theory and social justice advocacy recognize this form of devaluing human life, a liberatory approach will only be partial–and far from impartial.
As the pandemic develops throughout the world, we can see that the original issues of access by people with disabilities to vital equipment and services has risen to crisis levels whenever hospitals are overrun. But a new element is developing about access to vaccinations. While vulnerable populations like the elderly and those who have chronic conditions and are immune-compromised are often prioritized, the mechanisms by which access is granted are mired in the built-environment of the Internet through which people must register to be vaccinated. Recent reports have shown that within the group of vulnerables, there are the privileged with skills to use the often inaccessible websites hastily employed by government and health officials. Since at least half of the elderly in the US do not have Internet access, and many poor and people of color also have limited access, the vast majority of vaccines are currently in the US going to middle-class and wealthy white people. Thus the paradigm of a new technologically inspired form of eugenic restriction is in place. It may be that time will even out this discrimination, but based on current trends it seems that immunization does not lead to communitas, if one may reform Esposito's algorithm.
(Note: An earlier version of this essay was published on 26 June 2020 in Critical Inquiry's blog, In the Moment. )
Lennard J. Davis is Distinguished Professor of Liberal Arts and Sciences at the University of Illinois at Chicago in the departments of English, Disability Studies and Human Development, and Medical Education. His most recent book is Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights (2016) and he is the editor of the Disability Studies Reader (2013) and Beginning with Disability: A Primer (2017).