In which I give four suggestions to build a framework for an ethics of life
Philosophically and materially, I am a compostist, not a posthumanist. Beings — human and not — become with each other, compose and decompose each other, in every scale and register of time and stuff in sympoietic tangling, in earthly worlding and unworlding. All of us must become more ontologically inventive and sensible within the bumptious holobiome that Earth turns out to be, whether called Gaia or a Thousand Other Names.
In the previous three parts, I sketched what I believe to be an acceptable ontology and epistemology for the ethics of life in all its aspects. In Part One, I gave a view of science based on a developmental view of organisms. In Part Two, I sketched what ideas from process philosophy can mean for bioethics. In Part Three, I described how such a view of life as constantly developing, finding new ways, and engaging with chance encounters, also applies to pathology. Studying and understanding life, health and pathology means leaving behind ivory towers and ‘God tricks’. It means acknowledging that knowledge is situated and evolving and that the knowledge we generate will yield different situations to think with. At the same time, large-scale events such as the COVID-19 pandemic and nuclear threats from Russia’s invasion of Ukraine urge us to reconsider our relationship with the environment and the future. Bioethics that focuses on particular experiences, on global and even existential dangers, does not have to be a contradiction.
In this chapter, I suggest the foundations on which bioethics for the future could rest. I recapitulate the basic ideas of the previous chapters and explain how they can guide the bioethicist in everyday work, using different cases. First, I discuss the necessity and challenges of a rapprochement between environmental and medical ethics. Second, I present care ethics as a moral theory to guide all ethical theories. Third, I argue the need to appreciate the context sensitivity of specific challenges and engage with existing injustices. Fourth, I point out that creative engagement with the humanities can help develop stories for a liveable future.
13. Bringing Back the Environment
© 2022 Kristien Hens, CC BY-NC-ND 4.0 https://doi.org/10.11647/OBP.0320.13
In Part Three, I advocated reassessing how traditional bioethics has dealt with disability. In thought experiments and policy decisions, disability is too often thought of as inevitably linked with burden and suffering. I have suggested an approach that incorporates, and perhaps even starts from, idiosyncratic life experience and acknowledges that all scientific and bioethic thought is built upon a foundation of pre-existing and contextual knowledge. It may appear that thinking about disability is mainly relevant to medical ethics; in thinking about health and disease. However, disability may also shed a different light on our environmental responsibility. Recall that Van Rensselaer Potter dreamed of a single discipline which integrated medical and environmental ethics. In Part One, I sketched how a developmental, epigenetic way of thinking about organisms suggests an intricate entanglement between organisms and the environment. Indeed, scholars such as Josep Santaló and María Berdasco have argued that epigenetics may provide a bridge between biomedical ethics and environmental ethics (Santaló and Berdasco, 2022). In Part Three, Canguilhem’s approach sheds a different light on how we think of pathology. ‘Life is experience’, according to Canguilhem, and understanding life and the ethics of life entails understanding experience—our own experience and that of other creatures. That health and environment are intricately linked needs no further proof.
At the time of writing this book, we are in the second year of the COVID-19 pandemic, a pandemic linked to biodiversity loss. Bioethicists are also considering the relevance of the environment for health and medical ethics. For example, Cristina Richie has pointed out that bioethicists engage with environmental policies in two ways (Richie, 2019). On the one hand, the impact of health technologies and medicine on the environment can be part of an ethical deliberation on new technologies and treatments. The pandemic has demonstrated the effects of the enormous amount of disposable mouth masks and home tests produced for all of us. Both items were probably essential to battle the pandemic, but we can only start to imagine the excessive amount of waste they generate. On the other hand, there is the impact of climate change and environmental damage, such as pollution, on our health. Since the turn of the century and the advent of genomic technologies, personalised and precision medicine have heralded a new paradigm in medicine, so it seems. This evolution has not escaped bioethicists: the vast amount of personal data has generated challenges concerning privacy and solidarity with researchers. The main goal of preventive or personalised medicine seems to be preventing rather than curing diseases. Precision medicine hopes to offer personalised recommendations based on biomarkers. With these recommendations, people can take their health into their own hands and adjust their lifestyles. In light of current and future pandemics and the nuclear threat in 2022, we may wonder whether this emphasis on personal responsibility, under the guise of personal empowerment, is not misguided. Surely the advice to eat healthier or get more physical exercise is, although sound, leading us away from the significant threats to our health related to climate change and pollution?
Potter argued for bioethics that is essentially forward-looking. Such bioethics values life and strives for the survival of life in general and humanity in particular. It encompasses personal health-related ethical questions and questions regarding the survival of humanity at large. He wrote his first book when Rachel Carson had described the devastating consequences of pesticide pollution in her book Silent Spring (Carson, 2002). At that point, it became more and more apparent that human beings are responsible for and have the power to alter their destiny — either survival or extinction. I appreciate this forward-looking aspect of his approach to bioethics. Given the times we are in, it makes sense to focus primarily on the survival of humankind and their kin, both in ethics and science. Moreover, we must make sure that this is not mere survival. Movies such as Interstellar have depicted humanity as worthy of saving no matter what, even if it means repopulating dire planets with what is left over from humanity. This is not my take. The ultimate goal is not survival per se but a livable future filled with joy and with what is valuable. It is a future that allows life in all its forms to continue creatively, seeking new possibilities based on chance encounters. Hence, imagining what kind of future we want to preserve is included within global bioethics. It means being informed by different types of living and reassessing our emphasis on cold rationality. It also means staying with the trouble of irreconcilable paradoxes and accepting failures from which we can learn. However, before we get there, I will describe what could be such a paradox with thinking about our responsibility to future generations.
I have described how thought experiments in bioethics often ask us to imagine a future without disability. Such thought experiments ask us to choose between a future with and a future without disability and then argue that everyone in their right mind would choose a future without, especially if we assume that the future is as bleak as forecasts tell us. If we look at mainstream contemporary apocalyptic fiction, both in games, films, and literature, in post-apocalyptic survival mode, it is those with disabilities that draw the shortest straw. Such an image aligns with crude interpretations of Darwin’s survival of the fittest. People often assume it corresponds to how life would have been in the early days of humanity when we were cave dwellers in a harsh world or started to become farmers, and optimal productivity became the prime directive. However, this is neither the only possible past nor the only possible future. In their monumental book The Dawn of Everything, David Graeber and David Wengrow describe Romito 2, a 10,000-year-old burial site in which the remains of a male with a rare genetic disorder were found (Graeber and Wengrow, 2021). In life, the male had acromesomelic dysplasia — a condition affecting the growth of the bones in the forearms and legs. This story offers an antidote to the perception that disability had no place in human prehistory. In the same way, post-apocalyptic and speculative fiction may depict a future in which caring for each other gives meaning to survival.
Still, there may be another paradox left to deal with when it comes to disability, the environment, and the prevention of disability. How can we consider environmental factors that cause disability as bad but disability in itself as value-neutral? Some reproductive ethicists argue in favour of termination in the case of pregnancy if the child will be born with a disability. Pregnant people are urged to refrain from smoking and alcohol to avoid disability in their future offspring. When we go to such lengths to prevent disability, why don’t we consider disability in itself as bad? How to respect the views of disabled people who want to be cured? Thomas H. Bretz tackles the point of tension between environmental justice and disability advocacy in their paper Discussing Harm without Harming: Disability and Environmental Justice. (Bretz, 2020) They write,
This tension arises from the fact that environmental justice literature and media coverage usually portray disability as an automatic harm that must be avoided. Contrariwise, most disability study’s authors and activists reject this view and suggest we ’understand… a sustainable world as a world that has disability in it’.
A similar feeling is described by Eli Clare in their book Brilliant Imperfection, Grappling with Cure (Clare, 2017). They wonder how we can appreciate bodies in all their forms, including disabled ones, and at the same time condemn the environmental pollution that has caused them:
Amidst this cacophony, you want to know how to express your hatred of military pollution without feeding the assumption that your body-mind is tragic, wrong, and unnatural. No easy answers exist. You and I talk intensely; both the emotions and the ideas are dense. We arrive at a slogan for you: ‘I hate the military and love my body.’
Undoubtedly we could have come up with a catchier or more complex slogan. Nonetheless, it lays bare an essential question: how do we witness, name, and resist the injustices that reshape and damage all kinds of body-minds — plant and animal, organic and inorganic, nonhuman and human — while not equating disability with injustice? (Clare, 2017, p. 56)
Bretz suggests a way out of the dilemma. They argue that disabled persons suffer the most from environmental insults and other health hazards. The impact of pollution on people with asthma is a case in point. The COVID-19 pandemic, which could be considered an environmental hazard, has illustrated the impact on disabled people, as they were often affected the most by an infection. Bretz refers to Elizabeth Barnes, who points out a normative difference between being disabled and becoming disabled (Barnes, 2016). Barnes considers the first a neutral state (the mere difference view, as she calls it), whereas the latter involves shifting from one form of embodiment to another. Hence, Bretz suggests, we must separate environmental injustice from persons, irrespective of how they are embodied (Barnes, 2016).
Bretz suggests an account of environmental wrongdoing that does not rely on ableist assumptions about being disabled. Instead, Bretz uses Barnes’s mere difference view to show that disability in itself is neutral. Nevertheless, that does not imply that there cannot be harm associated with disability for specific people. However, these harms are always context-dependent and go hand in hand with environmental or psychological factors. How can we then still argue in favour of environmental justice? Bretz suggests that we should still look at the change in disability rates in a particular environment as a reason for an investigation into environmental hazards. If we find these toxic environments, we can object to them because they may have problematic effects, such as the death of organisms, illnesses, or structural damage to DNA. Of course, here we hit a limitation of Bretz’s approach: we can assume that death is bad, but the dividing line between illnesses, structural DNA damage, and disability is hard to draw. When does something become harmful and not a neutral difference?
Bretz also argues that we can look at the process rather than the outcome: if your embodiment is changed against your will, either from disabled to non-disabled and vice versa, this is wrong not because the procedure is bad, per se, but because there was no consent given. Moreover, we can examine whether harmful facilities and structures have been established following democratic deliberation. Bretz argues that, at the same time, we shouldn’t deny that disability can involve harm for some in combination with other factors. A specific type of embodiment can be less optimal in certain contexts. We are reminded of Georges Canguilhem. Moreover, we can consider the particular way pollution induces these changes as harmful. Pollution interferes with people’s bodies without their consent. Hence, Bretz states that the normative evaluation is of the trespass, not the embodiment.
I appreciate Bretz’s approach, which helps us understand environmental justice and disability justice as entangled. However, it seems impossible to make an argument that is watertight in all aspects. For example, what about toxic insults on embryos? Or on the primordial stem cells of men before they become fathers? These insults will affect any offspring that are potentially conceived years later. Bretz acknowledges this and states that, in this case,
consent for environmentally-induced changes in embodiment at early developmental stages is either unreasonable to assume (foetus), impossible (the affected person) or very unlikely (the pregnant person).
Embodiment is also tightly linked to one’s identity, and we are hitting the identity problem hard here. Environmental insults that affect a person’s embodiment before or even right after they are conceived probably are identity affecting, in that the person that develops from the embryo that has experienced the insult will be different from the person that would have developed without the environmental insult. How do you object to something that has made you as you are? In this way, such prenatal events may be more identity-affecting than when a different embodiment results from an injury or surgery. Bretz gives good reasons and strategies for environmental justice that avoids ableist arguments. However, maybe, in the end, Eli Clare’s paradox, loving your body but hating the military that has caused it to be as it is, seems unresolved.
Perhaps the apparent incompatibility of these two thoughts is not as problematic as it seems at first sight. The desire to dissolve paradoxes is, I think, related to a tendency in Western ethics to want ethics to be rational and consistent at all times. To a certain extent, ethical reflections have to be rational. Nevertheless, at the same time, ethics is not a waterproof system, nor does it need to be. Maybe the example of disability and the environment teaches us two things. Fighting environmental pollution, appreciating different ways of embodiment, and fighting ableist assumptions in the fight for environmental justice are all essential moral imperatives that can stand on their own. It may be impossible to bring them together in a grand watertight scheme. That does not mean that the incompatibility of our different values should be fatalistically accepted. Nor is this an argument that strengthens the idea that environmental and biomedical ethics are worlds apart. Paradoxes and incompatibilities have significant heuristic value: they teach us something about what is important. Such issues should be confronted head-on, not because we want to dissolve them, but because staying and thinking with the trouble of these inconsistencies may shed new light on what we value and what future we should imagine. This is, for example, a future without artificial pollution but one that simultaneously celebrates different ways of being embodied in the world. The case of disability offers a good starting point for forward-looking ethics. Rosemarie Garland-Thomson calls disability ‘the transformation of flesh as it encounters the world’ (Garland-Thomson, 2012). Garland-Thomson writes that ‘we will all become disabled if we live long enough and every life, every family has disability in it at some time’ (Garland-Thomson, 2012). This acknowledgement of the omnipresence of disability is a fact that I believe many have forgotten when they have argued for specific policies during the pandemic. Thinking with disability, however, means imagining a future that can sustain all different types of embodiment. It requires an approach to bioethics beyond conventional principlist, utilitarian or deontological approaches, as these too often assume that ethics can be made watertight. In the next part, I will continue imagining what this approach could be like.
1 Beast of Burden series: practice of enhancing attunement. Bartaku Art_Research (unpublished).