Abstract: In this essay I refer to the way disability is currently approached in legal and policy texts, and then turn to the underlying philosophical controversies. Drawing on Eva Kittay's pioneering work on the philosophy of disability I resume a classical perspective that sheds light not just on the blurring frontiers of functional approaches to disability, but on the general human condition. In this context, I contend that reflection on human aging constitutes an occasion to highlight other, specifically human abilities that often get lost when we are too focused on sheer functionality.
Social systems depend on abstract categorizations. Refining and enriching those categories can help us dealing with a variety of situations real people face, even if, in absence of a broader cultural framework, using those categories can eventually reinforce cultural prejudice and damage your self-conception.
Indeed: although words are useful, they also can be two-edged swords. If you fall under the category “unemployed”, you can have access to certain benefits. Yet, being categorized as unemployed is not considered something desirable; in a productive society it carries a certain stigma. But of course, you are never only “an unemployed person”, because your life is never exhausted in that or any other aspect of your social identity.
Individual people always exceed or transcend social categorizations. Hence, in order to create more inclusive societies, we should not merely aim at refining those categories. Rather, we need to enlarge our cultural vision of the human being, move beyond the categories entrenched in the social system and make room in society for the variegated contribution of people with unique life trajectories, subject to all sorts of contingencies.
1. Current policy and legal approaches to disability
During the last few decades we have witnessed important changes in the way legislation approaches disability. The Optional Protocol to the Convention on the Rights of Persons with Disabilities, issued in 24 January 2007, explicitly states that “disability is an evolving concept”; it further notes that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.[1]
Thus, instead of approaching disability in medical terms, as it was common in the past, current legal texts have adopted a mixed approach, which conceptualizes disability in terms of interaction between persons with impairments and their social environment. Accordingly, overcoming disabilities is not just a matter of medical interventions, but also a matter of social interventions.
The mixed model of disability advanced in those legislative texts tries to mediate between the medical and the social model. In Kittay’s words,
“Proponents of what has become known as the social model of disability claim that the difference that exists in the body or mind of a disabled person is disadvantageous only when there is a lack of fit between the body and the environment. They claim that disability, as opposed to the impairment in the body, is a social factor often caused by built physical environments that can, if the political will is there, be built differently. Sometimes ‘the environment’ needs to be understood more broadly. The obstacles that disable people face may be social: discrimination, neglect of needs and important services, social stigma and an intentional exclusion from participation in normal life. These result from social technologies that fail to accommodate disabled people.” (Kittay, 2020b: 294-5).
While the social model certainly captures an important aspect that affects the lives of many disabled people, one could discuss whether everything in the experience of disability can be captured merely in social terms. In this presentation I will address this concern.
In the meantime, however, it is the mixed model what has gained its place in legislation and policy. It was used in the World Report on Disability (2011)[2] and represented the basis for both the World Health Assembly resolution WHA66 on “Disability” (2013)[3] and WHA74.8 on “The highest attainable standard of health for persons with disabilities” (2021),[4] which also considered the Disability and Development Report issued in 2018.[5] In an article entitled “Rethinking disability” (2018), some contributors to the 2018 Report stated that
“The important lesson learned from WHO’s activities conceptualizing and measuring disability is that disability is a universal human experience, in the sense that everyone can be placed on a continuum of functioning and either currently experiences or is vulnerable to experiencing disability over the course of their lives. This understanding of disability is the key to mainstreaming disability within the public discourse. Truly, disability is about all of us, and as disability advocates rightly say, disability must be mainstreamed in society and throughout health and social policy such that it indeed becomes everyone’s business” (Cieza & Sabariego & Bickenbach, 2018).
By placing disability in a continuum of functioning, the concept has certainly been expanded and virtually made universal, so that almost everybody can recall an experience that gives a personal insight in its meaning, even if not everybody can identify himself or herself as disabled. For the latter, malfunctioning must be permanent. Interestingly, that malfunctioning needs not to be placed on the individual alone, but in the interaction between the individual and his or her environment.
Thus, the Spanish law directly approaches disability as a situation resulting from interaction of people with foreseeably permanent deficiencies, physical, mental, intellectual or sensory, and certain barriers that hinder their participation in society in equal conditions to others.[6] Accordingly, the situation of disability could disappear if those barriers were removed, even if the permanent deficiencies on the side of the individual were not. This obviously makes room for treating disability as a social problem to be tackled with appropriate social policies.
2. The cultural challenge
Yet, precisely because of its socially relative dimension, the universal scope of WHO’s resolutions on disability remains open to cultural interpretation, in ways that can hinder the implementation of certain social policies. Thus, in a webpage devoted to the topic of disability, the German Federal Ministry for economy and development explicitly states that “There is no universal, legally binding definition of disability. Social and cultural norms have a significant impact on what is considered a disability in a society”.[7] The explanation provided in the same webpage is enlightened:
"Official statistics from developing countries often underestimate the number of people with disabilities. On the one hand, because there is often a lack of funds for scientifically correct surveys, but on the other hand, because people with disabilities remain virtually invisible due to stigmatization and exclusion in their societies.
In international politics – and thus also in development cooperation – a ‘social’ definition of disability is increasingly becoming established. Accordingly, disability is characterized less by individual characteristics such as physical impairments, but rather by barriers in the environment and negative attitudes among other people. These prevent people with disabilities from being able to participate equally in social life”.[8]
In other words: while the social approach to disability is gaining ground in the realm of public policies, we still need to consider that there is not a simple way of counting disabled people, not just for economic or technical reasons, but also for cultural ones. This means that the determination to extend universal human rights to all people, including all disabled persons, and thus walking towards more inclusive societies cannot materialize itself unless we consider specific cultural contexts. As Faye Ginsburg and Rayna Rapp (2013) note,
“In the Global South, where an estimated 80% of people with disabilities reside, cross-cultural work in anthropology and disability studies shows that what counts as a disability in different cultural settings cannot be taken for granted (Devlieger et al. 2003, Addlakha et al. 2009). Ingstad & Whyte’s landmark coedited volume, Disability and Culture, early on highlighted non-Western social circumstances to understand how people with impairments survive and are integrated into or segregated from local social worlds. As Africanists, Ingstad & Whyte point out the complexity of the very category of disability when working in cross-cultural settings: “In many cultures, one cannot be ‘disabled’ for the simple reason that ‘disability’ as a recognized category does not exist. There are blind people, lame people, and ‘slow’ people, but ‘the disabled’ as a general term does not translate easily into many languages” (Ingstad & Whyte 1995, p. 7).
In this process, we should be careful not to approach cultural differences simply in terms of “barriers”. For, very often, those differences are embedded in culturally meaningful lifestyles. This makes cultural anthropologists’ approach to disability all the more relevant. In their introduction to Disability and culture, “[Ingstand & Whyte] point out the danger of imposing a Western individualizing model onto the heterogeneity of cultural worlds. At the same time, they caution against cultural essentialism: While they characterize societies as on a continuum that ranges from individualistic to sociocentric, they are quick to point out that either framework might be called into play as individuals negotiate kinship and opportunity structures (pp. 11, 36)” (Ginsburg & Rapp, 2013).
I take the reference to negotiation as a relevant indication of how to proceed in practice. While humanity is embodied differently in different traditions and cultures, the human inclination for what is good and true remains a practical way to articulate universal moral requirements within particular cultures, if only we take the time necessary to reflect on all the aspects involved in the human experience of disability.
3. Recent contributions to the philosophy of disability
In The Minority Body (2016), Elisabeth Barnes tried to develop a metaphysical approach that “does not build normative assumptions into the definition of disability”, i.e. that treats disability as just one difference and not necessarily a bad difference. She “proposes that disabled bodies are minority bodies of a certain sort, the sort for which the disability movement strives to achieve justice” (Kittay, 2020a: 226). In this way, she tries to overcome the incoherence incurred by this movement, insofar as it embraces a celebratory attitude of disability while aspiring to get rid of “ableism”. Accordingly, she insists that disability is “neutral with respect to a person’s well-being”, even if, when combined with other factors can be experienced negatively, just like “lacking an ability or enduring a hardship is not always a disadvantage, even if it is a disadvantage for certain purposes and for some people” (Kittay, 2020a: 229).
Despite being voiced by a disabled person, which in this way tries to create a “hermeneutical space” for naming certain experiences that lack appropriate designation (Kittay, 2020a: 225), Barnes’ approach has proved a controversial one. In a recent article that “reports the results of a philosophically-informed literature review of the relevant empirical research concerning the relationship between disability and wellbeing”, Avram Hiller has summarized his critique to Barnes in the following terms:
“(1) on average, those with disabilities have a significantly lower level of wellbeing than those without disabilities; (2) this lowered level of wellbeing endures across time; (3) this lowered level of wellbeing is probably not fully due to ableism or to society’s lack of accommodation of disabled people; (4) disabled people in wealthy countries nevertheless typically do lead good lives; and (5) individuals with some congenital disabilities do not experience as much of a lower level of wellbeing than those without disabilities” (Hiller, 2023).
Interestingly, however, Hiller shares the view that “the lives of disabled people are typically good lives, and there should be more of a focus on the positive aspects of being disabled, which in some cases are not possessed by those who are non-disabled” (Hiller, 2023). Yet, how can this possibly become a general outlook in absence of adequate social policies, or in cultural context that values achievement and productivity above everything else?
Eva Kittay’s pioneering philosophical work on disability was inspired by her experience as a mother of Sesha, born with a severe cognitive disability. While praising Barnes’ contribution to the field, she objects that her focus on physical disabilities assumes “an unwarranted dualistic conception” (Kittay, 2020a, 228), which results in a marginalization of other forms of disability. In an interesting interview, following the publication of her book Learning from my daughter (2019), Kittay reflected on how little conventional philosophical approaches had helped her to confront this situation:
“If I were to approach Sesha from a philosophical standpoint, a traditional philosophical standpoint – she wrote – I’d have to approach her as a kind of non-person and that would be exactly the opposite of how any decent mother would relate to her child. I wouldn’t say that my theoretical and philosophical life had influence on my approach to Sesha as a mother. But, rather, my life with Sesha has had a profound influence on my philosophical and theoretical work” (Gesser & Fietz & Kittay, 2021: 2).
Kittay’s philosophical reflection on disability was prompted by her experience as a mother of a disabled child, and her own sense of what a decent mother would do. At first, her philosophical training was even experienced as problematic in this regard:
“For me philosophy occupied that space where I was nobody’s mother for a long time. But even from the start it was clear that Sesha’s life with intellectual disabilities was a challenge to me as someone who invested so much importance to a life of the mind, to thinking, to rational discourse… but I didn’t take up that challenge for quite a while… There was really no acceptable place in philosophy to write about these matters. There was no field of Philosophy of Disability when I started out” (Gesser & Fietz & Kittay, 2021: 2).
In that context, feminist philosophy, “and the ways in which being a woman impacted on both the subject matter of philosophy and the way one did philosophy”, opened an epistemological space for her to deal philosophically with the issue of disability. Specifically, she recalls the challenge she experienced as she was invited to participate in a conference on prenatal diagnosis and selective abortion:
“Thinking about the issue from that vantage point was something I didn’t relish. Nonetheless, these were the two instances where I first started to think about my life with Sesha and how Sesha poses a challenge to conceptions of the primacy of rationality, the role language plays in how we think about being human, the notions of what justice involves, and so forth. If you start thinking about these questions from the perspective of disability and especially cognitive disability (because you could work people with physical disabilities into the theories more easily than you could include people with mental disabilities), you have to question prominent theories” (Gesser & Fietz & Kittay, 2021: 2).
Thus, confronted with Singer’s reduction of personhood to a set of properties, she argued that a human being cannot be captured in a set of properties (Kittay, 2019b), for it simply consists in being born to human parents (Kittay, 2021). “By a living human being – she writes – I mean all those born humans who are in a condition that is compatible with life”. This she takes to represent a “sufficiency condition” to be accorded full moral status,[9] against MacMahan and Singer’s criticisms, which consider that principle as the reason why we would have neglected our moral obligations towards the non-human world. As she writes,
“Philosophers may be the only people who think that being human isn’t sufficient for being morally significant or morally equal. But I do believe that being human is sufficient for being a moral equal. And in fact, when you are mistreated in certain important ways, what do you say? You say “how can you treat me this way. I’m a human being”. Not I’m a person. You can say that but most of the time what we say is “I’m a human being” (Gesser & Fietz & Kittay, 2021: 6).
While Eva Kittay has developed her philosophy of disability in connection with the ethics of care (Kittay, 2020b: 293), she acknowledges that many theorists of disability are hostile to this approach (Gesser & Fietz & Kittay, 2021: 4); they think that it diminishes the autonomy of disabled people, and thus their equal moral standing with other citizens, for it somehow sanctions their dependence on interpersonal relationships. Yet, in Kittay’s view, dependence is a feature of every human life, this being a reason for care to go beyond interpersonal relationships and inform a theory of justice. A defining feature of such theory would be the balance between the idea of rights and that of responsibilities toward dependents, given that dependence is often an unavoidable situation.
Accordingly, she proposes to place the idea of dependence, rather than that of independence, at the center of our institutions and public policy. To those critics that claim that the notion of “dependency is construed” she has a powerful argument on the contrary:
“No, the dependency of my daughter is not constructed. She would perish if there was not someone there tending to her needs. And there’s nothing constructed about that. But independency is constructed.” It’s a construct that is an abstraction from all the various dependencies that we decide to make invisible. Like other constructs, it has its use. And certainly, there are many times when we say things like, “don’t help me, I want to do it myself”. Fine. I think of this impulse less in terms of independency, and more as an expression of a desire to be efficacious, to make an imprint on the world. We all want that to some extent or another” (Gesser & Fietz & Kittay, 2021: 7).
Of course, this is not to deny the existence of pernicious dependencies that are socially constructed. Distinguishing between genuine, normal dependencies and pernicious ones requires some conceptual work.
It should be clear that some sort of dependency belongs to the human condition: we all depend on one another, and there is nothing humiliating in this; we all accept the other’s help in many occasions and contexts, simply to save efforts for other purposes. For this reason, rather than resorting to the notion of “independence”, which emphasizes “self-determination” (autonomy) and “self-reliance”, Kittay signifies the human condition through the notion of “managed dependency” to signify the general human condition.
For similar reasons, rather than speaking of autonomy, Kittay draws on the feminist notion of “relational autonomy” to say that “who we have become as individuals has always been influenced by the relationships we’ve been in and is always affected by the relationships we currently have. That is, who we are is both a consequence of, and is constituted by, those with whom we have been and are in relationship” (Gesser & Fietz & Kittay, 2021: 8).
The point of drawing those distinctions is that some human beings lack the kind of “self-determination” and “self-reliance” that make up the usual notion of “independence”, even if they retain a clear sense of themselves that makes them able to lead good lives in their situation. The fact that their lives are affected by a special precariousness is, again, an accentuation of something that is proper to every human life: nobody has a good life fully secured. In Kittay’s view, such precariousness “need not affect our quality of life – again, as long as we have reason to feel relatively secure that we can get what we need. Precariousness reduces well-being when that precariousness is not countered with a security that we can either procure or receive from another what we need” (Kittay, 2020b: 296).
The latter, however, requires entrenching the idea of dependency in our social system: “Until we have a system of justice that is designed to take dependency seriously”, she writes, “the already precarious well-being of disabled people will be made that much more precarious by the precarity that caregivers face” (Kittay, 2020b: 293)
This explains her ambivalent position towards the disability rights movement: while she supports their fight against pernicious dependencies, deriving from lack of societal resources to remove constraints that hinder quality of life of disabled people, she does not share the focus of disability rights movement on autonomy. For sure,
“When people are made dependent by built environments that are not suitable to them, when people are made dependent because they’re not given the kinds of services or equipment they need, when they are left to sit in their house and be dependent on whomsoever happens to come in to give them an assist, these are awful constraints that impede having a flourishing life. The removal of those kinds of constraints are certainly worth fighting for” (Gesser & Fietz & Kittay, 2021: 8).
Yet, in her view, fighting for those causes is different to put the concept of autonomy at the center of the movement. Indeed: although “self-governance” certainly represents a good, not every human being has the rational capacities required to act in that way; not everybody can even aspire to be independent and productive (Kittay, 2020b); surely, not people in the situation of her daughter, who nevertheless retains a sense of her agency, for which she demands respect: “I do think that I have to respect her sense of agency, and I do think I have to respect her sense of what feels right and doesn’t feel right” (Gesser & Fietz & Kittay, 2021: 8). Hence, a valid way to argue for the rights and well-being of disabled people, would be to stress the need of removing constraints, but also exploring “ways that disabled people can be empowered by the appropriate assistance”, for “dependencies can at times be a good thing, something that can make life rich” (Gesser & Fietz & Kittay, 2021: 9).
Kittay is well aware that the concepts and approaches to disability that she has developed within the framework of an ethics of care are difficult to transfer to the institutional level, for the institutional level focuses on the generalized other,[10] while care for care is primarily focused on the particular other. In addition, the concept of autonomy is so embedded in the legislation that “where people don’t see any manifest autonomy, they assume a lack of agency and competency, which in turn, gives them license to ignore what that person may want” (Gesser & Fietz & Kittay, 2021: 10). This, however, would be a sad mistake, and actually an injustice. For those people do have a sense of their agency that need to be respected, even if that agency does not achieve the level of full autonomy.
From this perspective, Kittay is even ready to take part of Barnes’ argument. For, as she rightly notes, “Much of Barnes’s discussion is directed to showing us how the difficulties and disadvantages of a life with disability has analogies in most of human life”. Along these lines, but moving beyond Barnes’ focus on physical disabilities, Kittay adds that “the precariousness of a good life lived by a person with mental disabilities directs us to see the analogous precariousness in all of our lives”. This she takes to be “one of the most urgent reasons for bringing awareness of disability into philosophical thought”, namely, “to provide a fuller understanding of the human condition” (Kittay, 2020a: 231).
This is what I would like to consider more closely in the following section.
4. The human condition reconsidered
Even if language can often be vehicle of cultural prejudice, it is also a repository of basic understandings that might be helpful to make sense of human experience. All we need is a philosophical critique of language. Thus, while the very word “disability” directs our attention to the thought of one or some abilities that are defective or lacking, nothing is initially said as to the place where those disabilities are to be placed, whether in individual bodies or in their environment. Furthermore, one could argue that, insofar as we are social animals, there exists a certain continuum between the two, especially when we adopt a practical approach, i.e. if we focus on the ability to perform “the basic activities of life”, as suggested in the definition above.
Indeed, from a philosophical point of view the basic problem to arrive at an operational definition of disability seems to be the loose meaning of the “basic activities of life” as well as the kind of assistance we might need to carry them out. For, while the basic activities of life are fundamentally similar across societies, the assistance required to perform them in a functional way may vary from some societies to others, depending on the kind of social relationships or the technological means one has access to on an ordinary basis. As Aristotle puts it,
“If people meet with an impossibility, they give up… But if it seems possible they will try to do it. What is possible is what can be accomplished by our own efforts; what can be brought about through our friends is in a sense accomplished by our own efforts, in that the first principle is in us. The question is sometimes what tools to use, sometimes what use to make of them. The same goes for other cases: sometimes the question is the means, sometimes how they are to be used or the means to that use”. (NE, III, 3, 1112b 25-32)
These words could provide some ground to the view that aims to overcome decontextualized approaches to disability, insofar as, assuming that each human being is principle of his or her own actions, directs our attention to the available tools and the use he or she can make of them, which depends on a variety of factors. Interestingly, however, Aristotle establishes a significant difference between what we can attain through our own efforts, and what can be attained only through other means; and, even more interestingly, he expands the meaning of our own efforts to include our friends, arguing that, in this case, the first principle is still in us. The argument is intriguing, because, at first sight, one could object that in all cases the action’s principle is in us, and all the more so in case we use technical means, which, unlike friends, will not present any opposition to our own will. Yet, Aristotle takes friends to be closer to the action’s principle than whatever technical means, perhaps because we invest more efforts in identifying with our friends than in using external tools.
Considering what could count as “socially normal” in a given society, both in terms of relationships and available technological means, Aristotle’s words could partially support the invitation to frame disability in social terms. Thus, to the extent that having a cell phone has become a must in our societies, lacking this device already represents a clear impairment to perform many routine activities.
Certainly, we would not say that someone lacking a cell phone suffers a disability, for we still make a meaningful distinction between bodily based disabilities and externally based disabilities, between our organism, as a natural part of our own selves, and external instruments that we use to pursue our ends. I think this distinction cannot be dispensed with, not just for ontological reasons but for pragmatic ones, to differentiate enabling technologies, which restore organic functionality to normal parameters, and enhancing technologies, which go beyond what is normal organic functionality, exponentially increasing differences among humans depending on their different access to those technologies, ultimately depending on their wealth.
I am fully aware that speaking both of what counts as “socially normal” and of “normal parameters” is likely to arise objections, to the extent that it can easily acquire normative connotations that bypass individual circumstances and features. In this context, I cannot but recall my mother’s anguish as the pediatrician told her that my brother’s weight and stature was “below the canon”. Yet, speaking of the “socially normal” and “normal parameters” represents a guidance both for social policies and medical diagnosis, which does not replace judgment on the particular relevant circumstances. If the purpose of social policies is to help people to make the most of their lives in an equitable way, we cannot dispense with that reflection.
Of course, at this point we should be discussing what we mean by “making the most of our lives”. Current discussions rarely consider the difference between good life, wellbeing and quality of life. When they do, they often consider Aristotle’s approach to happiness in terms of virtuous actions and works. Yet, in normal circumstances, virtuous actions not only require good prohairesis but also organic functionality and some external tool. The fact that human affairs are subject to many contingencies and misfortunes only speaks of the fragility of this sort of happiness.[11] Aquinas also seems to subscribe this view,[12] even if, as a Christian, he is more prepared than Aristotle to deal with misfortune and anticipate another kind of happiness, which he calls perfect happiness, thus nourishing a principle of hope.
Interestingly, it is only when Aquinas discusses the requirements for that perfect happiness, which he places in seeing God, when the basic distinction between a functional body and external instruments emerges. In that context, he asserts that the perfection of the body will be part of perfect happiness, for “it is natural to the soul to be united to the body” (Sth. I-II, q. 4, a. 6); external goods, by contrast, “are not necessary for perfect Happiness”. Indeed, external goods are only requisite “for the support of the animal body; or for certain operations which belong to human life, which we perform by means of the animal body: whereas that perfect Happiness which consists in seeing God, will be either in the soul separated from the body, or in the soul united to the body then no longer animal but spiritual” (Sth. I-II, q. 4, a 7).
The talk of “animal body” in this fragment is a way of referring to our present body, in contrast with the “spiritual body” that, according to St. Paul, the blessed would have after the resurrection. The important point, for our purposes here, is that in this world there is a practical equation between having a functional body and having access to the external goods necessary for sustaining it and operating through it.
This practical approach, then, would support a relative blurring of the frontiers between disability and social context. Only relative, because, as stated above, there is still a difference between the ways we relate to our body and to external instruments. Indeed, our body is not only meant to be a silent instrument of our soul, but also a natural expression of ourselves, which, in principle, only calls attention upon itself when it fails in its normal operations. When we speak of remedying disability, we refer primarily to remedying that kind of failing. In practice, however, the remedies can involve both medical and social interventions. Thus, current research in the US has shown that the situation of disabled people in rural areas in significantly worse than in urban ones (Zhao & Okoro & Hsia & Garvin &Town, 2019), which should have consequences at the level of public health intervention. More generally, as Kittay has emphasized, the precarity suffered by many caregivers has an impact on the precariousness suffered by many disabled people (Kittay, 2020b).
Indeed, as soon as we consider the social context in which we carry on our ordinary lives, the concept of disability becomes blurred with that of poverty and social inequality. After all, two people with similar physical and psychological conditions can be impaired or not to carry on their ordinary lives depending on their different access to health care and other kinds of medical services that are common in that society, such as a wearing a pair of glasses. Presently, “to be considered legally blind, a person must have visual acuity ten times less than normal even when wearing glasses or contact lenses. On the other hand, a person who does not have a visual field greater than 10 degrees is also considered legally blind”. Yet, what if you don’t have access to those glasses in the first place?
Another option, of course, is that you have someone to read to you aloud, as Jorge Luis Borges had Alberto Manguel. As Aristotle noted, “what can be brought about through our friends is in a sense accomplished by our own efforts, in that the first principle is in us”. More generally, friends can certainly compensate some deficiencies and be useful for many purposes, even if they are never mere instrument. Thus, following Aristotle, Aquinas says that the good man needs friends,
“Not, indeed, to make use of them, since he suffices himself; nor to delight in them, since he possesses perfect delight in the operation of virtue; but for the purpose of a good operation, viz. that he may do good to them; that he may delight in seeing them do good; and again, that he may be helped by them in his good work. For in order that man may do well, whether in the works of the active life, or in those of the contemplative life, he needs the fellowship of friends” (Sth. I-II, q. 4, a. 8)
And, in meaningful contrast with other kinds of “external goods”, which are required in this world for functional reasons, but are not necessary for the vision of God, Aquinas quotes Augustine to say that the presence of friends does contribute even to that perfect happiness, in that “they see one another and rejoice in God at their fellowship” (Sth I-II, q. 4, a. 8).
As a matter of fact, already in this world, friendly and trusting relationships provide the context for human development in fundamental ways, which are also relevant for adequately addressing and remedying certain disabilities. Thus, a distinctive basic human response to the disabilities affecting people is care. This is perhaps particularly obvious in the case of families who take care of a disabled relative, but also in many other human communities. As cultural anthropologists Ginsburg and Rapp (2013) note, “Discoveries of burials of individuals who survived for years with disabilities have opened up work on the ‘bioarchaeology of care’, showing the relevance of this category across time”. This is not to say that human beings have always responded to disability with care; other times they have responded with eugenic and dehumanizing policies. The way disability is approached in a given society, as well as the readiness to accept the label of “disabled” upon oneself certainly varies (Ginsburg & Rapp, 2013: 59) across societies, depending on the relative value that this society ascribes not only to independence or solidarity, but more generally to the very fact of being human, independently of whether one is functional or not in certain situations are contexts. As we have seen, in the last decades, the efforts to change cultural perceptions on disability have been prominent. Only lately a similar effort is being made with aging.[13]
5. Disability and aging
It is noteworthy that, despite of the increasing view of disability as a “universal human experience”, we still tend to view it as an alien phenomenon, as something that happens to others, not to ourselves. As we daily engage in different activities, we easily give physical and psychical functionality for granted. To the extent we feel our strength we tend to forget our own fragility and vulnerability. This obliviousness, however, has consequences in the way we relate to others who suffer from any impairment; specifically, it makes difficult for us to imagine how it feels like to live with disabilities, and hence needing an extra help to perform routine activities.
From this perspective, being reminded our own fragility can also have a positive impact on the way we relate to others. Interestingly, we need not going very far to experience that fragility, for we carry a living reminder within ourselves. As a matter of fact, disability represents a possibility embedded in our very human nature, lurking silently within us, not merely as the collateral effect of unfortunate accidents, or unexpected diseases, but rather as something implicit in the uneventful and ordinary passing of time that brings the gradual decline of certain abilities, physical as well as mental. As Ginsburg and Rapp note
“Unlike the categories of race and gender from which one can only enter or exit very rarely and with enormous and conscious effort – “passing” or “transgendering”, for example – disability has a distinctive quality: It is a category anyone might enter through aging or in a heartbeat, challenging lifelong presumptions of stable identities and normativity. Of course, some will be more vulnerable than others owing to poverty, war, disaster, and the vagaries of health and health care, but no social category is exempt from disabling experiences, however they are defined (Block et al. 2001, Boyce & Weera 2001, Fjord & Manderson 2009, Eide & Ingstad 201 1, MacMakin 201 1)” (Ginsburg & Rapp, 2013: 55).
Aging can certainly be experienced as a slow evolving, diachronic disability, as a disability in progress. Why should be like this? Isn’t it funny that we spend half of our life trying to acquire the skills necessary to perform certain activities, and then spend the second half losing part of those hard-earned skills? Yet, does this observation do full justice to the phenomenon of human aging? Definitely not. Things are not so simple. Considering human aging merely from the perspective of disability represents a limited and partial view of it, for the passing of time also unveils for us new dimensions of experience which enrich human life both at the individual and the societal level.
At the individual level, nobody conveyed this experience in a more passionate way as St Paul in one of his letters to the Corinthians: “Indeed, though this outer human nature of ours may be falling into decay at the same time our inner human nature is renewed day by day” (2 Co, 4, 16).
These words by St Paul show that human aging cannot simply be equated to natural decay. There are other, spiritual dimensions that need to be considered in order to give full account of human experience of aging. In human beings, natural decay can actually be accompanied by spiritual growth – a spiritual growth that, beyond any phenomenology of human experience, for Paul could even remain hidden to our own conscience.
From a philosophical perspective, we probably cannot go that far. However, we can retain the fact that human aging is not a one-sided phenomenon. Only a callous naturalism, blind to the richness of human experience, would allow aging to be valued only through individual physical or intellectual performance, deprived of any social context. For human aging, too, is not just a matter of being physically and psychically functional but also a matter of social context and cultural perceptions: very often, the problem is not be so much aging per se as rather the way in which aging is perceived in a given society, because of the sort of abilities that are deemed necessary to be entirely functional in that society (Edgerton, 1967). Accordingly, if what a society values most is sheer productivity, it will tend to cast a negative light upon those who are less productive, leaving them at the margins. In the meantime, however, society runs the risk of losing sight of other kinds of values that enrich social life and lend meaning to productivity itself.
While there is an increasing conscience that disabled persons should be given the opportunity to contribute with their specific talents, no less than any other person, a similar conscience is still in the making in the case of aged people: it is only in recent times that the term “ageism” is gaining traction, to signal a specific form of discrimination that systematically ignores the specific contributions that aged people could make to society. In part, this movement is caused by reflecting on how demographic transition to older populations is going to change our societies. Thus, drawing on the World Report on aging and health of 2015,[14] which explored the different ways in which the demographic shift is going to impact on our lives, and health care systems, the 69th World Health Assembly, held in 2016, clearly stated that
“Longer lives are an incredibly valuable resource, both for each of us as individuals and for society more broadly. Older people participate in, and contribute to, society in many ways, including as mentors, caregivers, artists, consumers, innovators, entrepreneurs and members of the workforce. This social engagement may in turn reinforce the health and well-being of older people themselves”.[15]
It further noted that most of the health problems of older age are linked to chronic conditions, and “can be prevented or delayed by healthy behaviors and by the environments that support them”, so that “for people with significant declines in capacity, supportive environments can promote dignity, autonomy, functioning and continued personal growth”, even if “the world is very far from this ideal, particularly for poor older people and those from disadvantaged social groups”.[16] Indeed, while, “ageing societies are a triumph of economic growth, health care, public health and social policy (…) population ageing is still viewed as creating an unsustainable fiscal burden, particularly due to increased demand for social security and health care provision” (2023: 1). Viewing them as a burden, however, does not constitute any supportive environment. Yet, as Sarah Harper notes,
“it is not the changing demographics per se which are the challenge, rather the policies and institutions which frame the outcomes. Nearly 25 years after the Millennium many of our institutions are still defined by 20th century structures which are no longer effective for 21st century Dynamics. And these institutions and public perceptions influence the behaviour of individuals within ageing societies” (Harper 2023: 2).
Thus, considering the French opposition to enlarge the age of retirement, and based on her own previous research in the UK, Harper further suggested that “growing awareness of age discriminatory practices by employers and fellow employees over a 20-year period was one of the main drivers of men moving out of full-time employment from age 50 onwards, while lack of training and development opportunities also figured highly as a driver of early retirement. Similarly, French research has suggested that older people’s working conditions have deteriorated over recent decades” (Harper, 2023: 2) as it is “the importance of older adults being able to give un-paid care and support to family members through elder care and grand-parenting” (Harper, 2023: 3), thus contributing both to economic support and family well-being.
From this perspective, walking towards more inclusive societies involves paying attention to all people in all moments of their life trajectories, including the late phase of their lives, and make room to the unique contribution that each person can make to social life, not just in terms of productive goods, but also, as Donati would put it, in terms of “relational goods”. Importantly, while in some ways those relational goods can be measured in monetary terms – at least in the sense that they provide un-paid care and support family members in their professional careers – their specific contribution to human flourishing cannot be measured in those terms.
Accordingly, while we certainly need structural changes to tackle the societal challenges derived from demographic change, we also need to pay attention to the “relational goods” involved in intergenerational relationships. From this perspective, besides considering the societal resources needed to sustain the demographic change, we also need to spark cultural change regarding the value of later life, especially in those cases in which all productivity fades, a change that can aptly be described in terms of “humanization”.
This is particularly to be seen especially in the case of people affected by severe disabilities or senility. Precisely in those cases, when all functional values have disappeared, and there is only room for recognizing and asserting the presence of the other, we are confronted with our bare humanity. This is clearly the experience Kittay describes in her last book, Learning from My Daughter (2019), as she speaks of “the ability to just being able to be. Just being able to appreciate the gifts of being”, and “coming up with this as one component of a good life”. Far from being a philosopher’s privilege, this is a current human experience, which invites reflection on both our consideration of disability and aging. To this effect, she refers an anecdote:
“Recently I met an advocate for disabled and abused children who works in a hospital. She told me of a woman who would come in frequently because the child she had adopted had very significant disabilities and many serious medical conditions that needed constant monitoring. The mother, she said, was not an educated woman, but she was someone who acted as a foster mother for many and had adopted several of the children who had disabilities. The child in question was the most seriously affected of her children. The adoptive mother took beautiful care of him. In speaking to the advocate, she said: “People always ask me, ‘What he do?’ Why people always ask me ‘What he do?’ He be! He be!” She understood what I take to be an extremely profound point about the value of another human being: It’s not what he does. He just is. He’s just here. And in his case, that is sufficient” (Gesser & Fietz & Kittay, 2021: 9).
No doubt, it is.
References
Americans with Disabilities Act, https://www.ada.gov/law-and-regs/title-ii-2010-regulations/
Aquinas, St. Thomas, Summa theologiae, Lander, Wyo.: Aquinas Institute for the Study of Sacred Doctrine, 2012.
Aristotle, Nicomachean Ethics, Cambridge: Cambridge University Press, ed. Roger Crisp, 2014.
Barnes, J. The Minority Body. A Theory of Disability. New York: Oxford University Press, 2016.
Cieza, A., Sabariego, C., Bickenbach, J. et al. “Rethinking Disability”. BMC Med 16, 14 (2018). https://doi.org/10.1186/s12916-017-1002-6
Convention on the Rights of Persons with Disabilities, A/RES/61/106 (24 January 2007), available from http://www.un.org/esa/socdev/enable/rights/convtexte.htm
Disability and Development Report issued in 2018, https://social.un.org/publications/UN-Flagship-Report-Disability-Final.pdf
German definition of disability, https://www.bmz.de/de/themen/rechte-menschen-mit-behinderungen/definition-behinderung-20364
Gesser, M. Helena Fietz and Eva Feder Kittay, “Ethics of Care and the Experience of Disability”, Estudos Feministas, 2021, Vol. 29, No. 2 (2021), pp. 1-11. DOI: 10.1590/1806-9584-2021v29n264987
Ginsburg, F. & Rapp, R. “Disability Worlds”. In Annual Review of Anthropology, 2013, Vol. 42 (2013), pp. 53-68.
Harper, S. (2019). “Living Longer within Ageing Societies”. Journal of Population Ageing (2019) 12:133-136. https://doi.org/10.1007/s12062-019-09248-4
Harper, S. (2023) “Ageing Societies are a Triumph”. In Journal of Population Ageing 16:1-4 https://doi.org/10.1007/s12062-023-09417-6
Kittay, E. (2019a) Learning from my Daughter, Oxford: Oxford University Press.
Kittay, E. (2019b) Comments on Alice Crary’s The Horrific History of Comparisons between Cognitive Disability and Animality (and How to Move Past It) and Peter Singer’s Response to Crary. ZEMO 2, 127-133 (2019). https://doi.org/10.1007/s42048-018-0022-z
Kittay, E. (2020a). “Where is the ‘Dis’ in Disability? A Review of The Minority Body: A Theory of Disability by Elizabeth Barnes”. In: Philosophy and phenomenological research, 2020, Vol.100 (1), p. 225-231. DOI: 10.1111/phpr.12667
Kittay, E. (2020b). Kittay EF. Precarity, precariousness, and disability. J Soc Philos. 2021;52: 292-309. https://doi.org/10.1111/josp.12391
Kittay, E. (2021) “Why Human Difference is Critical to a Conception of Moral Standing: An Argument for the Sufficiency of Being Human for Full Moral Status”, The Journal of Philosophy of Disability, vol. 1, pp. 79-103, doi: 10.5840/jpd20211199
Spanish law on disability, https://www.boe.es/boe/dias/2013/12/03/pdfs/BOE-A-2013-12632.pdf
United Nations, General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106 (24 January 2007), available from http://www.un.org/esa/socdev/enable/rights/convtexte.htm
World Report on Disability (2011), https://www.refworld.org/pdfid/50854a322.pdf
World Health Assembly resolution WHA66 on “Disability” (2013), https://iris.who.int/bitstream/handle/10665/150160/A66_R9-en.pdf?sequence=1&isAllowed=y
World Health Assembly resolution WHA74.8 on “The highest attainable standard of health for persons with disabilities” (2021), https://apps.who.int/gb/ebwha/pdf_files/WHA74/A74_R8-en.pdf
Zhao, Guixiang & Catherine A. Okoro, Jason Hsia, William S. Garvin, Machell Town, “Prevalence of Disability and Disability Types by Urban-Rural County Classification – U.S., 2016”, American Journal of Preventive Medicine, Vol. 57, Issue 6, 2019, pp. 749-756. https://doi-org.ezproxy.unav.es/10.1016/j.amepre.2019.07.022
[1] United Nations, General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106 (24 January 2007), available from http://www.un.org/esa/socdev/enable/rights/convtexte.htm
[2] https://www.refworld.org/pdfid/50854a322.pdf
[3] https://iris.who.int/bitstream/handle/10665/150160/A66_R9-en.pdf?sequence=1&isAllowed=y
[4] https://apps.who.int/gb/ebwha/pdf_files/WHA74/A74_R8-en.pdf
[5] https://social.un.org/publications/UN-Flagship-Report-Disability-Final.pdf
[6] https://www.boe.es/boe/dias/2013/12/03/pdfs/BOE-A-2013-12632.pdf
[7] https://www.bmz.de/de/themen/rechte-menschen-mit-behinderungen/definition-behinderung-20364
[8] https://www.bmz.de/de/themen/rechte-menschen-mit-behinderungen/definition-behinderung-20364
[9] Controversially, she holds that this condition leaves the moral status of the fetus undecided: “The fetus is not yet a human being in this sense. It exists, even in later stages, because another human being houses it and makes its existence possible. This intricate relationship complicates determining its moral status relative to the human being to whom it is tethered. But we need not resolve the vexing question of the moral status of the fetus, nor need we reject or accept abortion rights, to accept the sufficiency condition”. (Kittay, 2021: 80) By contrast, “Individuals who enter end-stage Alzheimers or other forms of fatal dementia are still in a condition that is compatible with life – though barely so. At the very end of end-stage Alzheimer’s, for example, once the brain is so damaged that the condition ceases to be compatible with life, the individual dies” (Kittay, 2021: 81). In my view, Kittay’s own insistence on “dependency” as a feature of all human beings does not fit well with the restriction she places on the moral status of the fetus because of its being dependent on its mother.
[10] “Rawls’ [Theory of Justice] is based on the Kantian Ethics. The point of the state is to allow people to develop self- respect, which from a Kantian point of view is the most essential thing: to be able to act as a self-respecting person, acting out of goodwill. In a Kantian ethics, right action, which leads to self-respect, takes priority over happiness. What does a theory of justice look like if you take an ethics of care as the central ethical perspective? Rights that we can claim for ourselves or that others insist upon would not have quite the importance that they have in the theory of justice. Instead, the importance of acting in accordance with our own or another’s rights needs to be reconciled with the need to honor our responsibilities – especially responsibilities that we have toward dependents. Such a theory of justice would need to take dependence rather than (or along with) independence as central to our thinking about the sorts of social institutions we want to have”. (Gesser & Kittay, 2021: 5).
[11] Aristotle, NE, I, 10, 1100 b 23 ff.
[12] In fact, although in his discussion of the means required for happiness Aquinas clearly distinguishes between the good disposition of the body and the external goods, he also notes that both are necessary for the soul to exercise itself in perfect works: “If we speak of that happiness which man can acquire in this life, it is evident that a well-disposed body is of necessity required for it. For this happiness consists, according to the Philosopher (Ethic. i, 13) in "an operation according to perfect virtue"; and it is clear that man can be hindered, by indisposition of the body, from every operation of virtue…” (Sth. I-II, q. 4, a. 6). “For imperfect happiness, such as can be had in this life, external goods are necessary, not as belonging to the essence of happiness, but by serving as instruments to happiness, which consists in an operation of virtue, as stated in Ethic. i, 13. For man needs in this life, the necessaries of the body, both for the operation of contemplative virtue, and for the operation of active virtue, for which latter he needs also many other things by means of which to perform its operations…” (Sth. I-II, q. 4, a. 7).
[13] “Iwakuma and Breitenbach demonstrate that people with lifelong disabilities often transition with relative ease to the changed pacing of old age when compared with their typical peers (Breitenbach 200 1, Iwakuma 2001) … Similarly, Cohen's (1998) book, No Aging in India, situates and contrasts South Asian and American assumptions about cultural understandings of senility, as does the edited collection Thinking About Dementia (Leibing & Cohen 2006)” (Ginsburg & Rapp, 2013: 61).
[15] https://apps.who.int/gb/ebwha/pdf_files/WHA69/A69_17-en.pdf, n. 10.
[16] https://apps.who.int/gb/ebwha/pdf_files/WHA69/A69_17-en.pdf, n. 13.