Perhaps due to the Nazi Germany atrocities, it is nowadays ethically and politically inappropriate to evaluate the moral value of human beings purely and openly in terms of their productivity. It is safe to say that there exists a large consensus among political theorists and the general public that economically unproductive people should be taken care of, and it is thought that they share the same moral value as the rest of humankind, and that they should be treated accordingly. Naturally, the reality is a lot more complex

26 Livestock and racehorses are undoubtedly good examples of animals that are exploited, but does this apply to guide dogs similarly? Perhaps there is a difference in that the reason for the use of guide dogs can be seen as ethically more justified than the use of livestock or racehorses. Even if this were the case, guide dogs are, in any case, trained and used non-voluntarily for the advantage of humans. In other words, they are exploited. Whether it is a morally justified form of exploitation is a separate issue.

and a lot less politically correct; it can plausibly be argued that these days neoliberalism contributes to the devaluing of disabled bodies and minds, thus resurging practices from the Industrial Revolution that dictate who are fully human (Hughes, 2012). But these kinds of cultural conceptions that place lower value on disabled people are not expressed explicitly in economic-instrumental terms, the way they indeed are expressed in relation to animals. It is generally accepted (although increasingly problematic) to view non-human animals as morally less valuable than humans, to treat them as means for profit, and nothing else (as is the case with livestock). It would not, however, be appropriate to think about disabled people in similar lines even if they were, in fact, treated instrumentally and animalised in various ways.27

So, although it is completely reasonable to argue that there are similarities in the ways animals and disabled people are being mistreated, exploited and even oppressed, the species does make a difference. Consider again the example of animal mercy killings: conceptions of human disability being tragic are projected onto animals with the result that we kill them out of mercy (Taylor, 2017, p. 23). It is true that human beings in general think that disability is something undesirable but what undesirability means in practice, and exactly how undesirable it actually is, is related to one's species. That is, it is not insignificant in the case of mobility impairment to consider its bearer's species; a broken leg (let alone a missing leg) for a deer is great disadvantage as it will not be able escape predators, whereas for humans a missing limb is a disadvantage mostly for environmental reasons, and not a deadly one, anyway. So, beings across species have different criteria for well-being and a good life. There are undoubtedly some sources of well-being or ill-being that are universally bad (e.g. excruciating pain), irrespective the subject's species. That is, causing

27 Pets are a special group of animals whose moral status is not directly related to their species but, rather, to their relationship with their owners. In in some philosophical accounts their moral status is seen somewhat similar to that of people with PIMD (see Vehmas & Curtis, 2017). But from that view there is long way to the conclusion that persons with PIMD could be put down for their own good when they suffer from incurable sickness, as is the case with pets.

excruciating pain by torture to a human being (whether he or she is disabled or not) is always wrong, as is torturing a pig, because torturing is in and of itself morally wrong. However, torturing a human would be even *more* wrong than torturing a pig (Curtis & Vehmas, 2016a; 2016b; see Appendix).

## **Animality in practice: architecture**

As the previous discussion probably made clear, it remains somewhat unclear to us whether conceptualising the lives of persons with PIMD in terms of animality would, all things considered, be useful. So, what we will do next is to unpack some elements of their lives in our data in terms of animality, and see whether such analysis is productive. We have chosen the following three factors: architecture, the warehousing mentality in care work, and the view of persons with PIMD as menace.

Considering that adults with PIMD typically do not go to work and do not study, their living conditions are perhaps the most important factor when evaluating their everyday lives. Until very recently, persons with PIMD have been placed in Western countries in dire conditions in institutions that often have been a mixture of prison and piggery. Places like Willowbrook in Staten Island, NYC, were in the 1960s and 1970s overcrowded and filthy, where children were even used as guinea pigs in medical experiments (Rothman & Rothman, 2004). Some inhumane living conditions in the past could have been partly due to the contemporary beliefs about the lack of sensory acuity of individuals with intellectual disability; that is, that they are insensitive to heat and cold. This belief was popular into the mid-1800s and often resulted in the institutions' residents being denied heat during the winter (Wolfensberger, 1972, p. 18). But often the animalisation of disabled people has manifested in more subtle ways. For example, architectural solutions in institutions speak powerful language of the animality of their residents:

putting a drain in the middle of a living room floor … interprets the person who lives in such a room as an animal who must be 'kept' and cleaned as in a zoo. A non-enclosed toilet says that its user has no human feeling of modesty. Bars on the windows, or even an isolated location of a building, suggests that the building's inhabitants are a menace to society. (Wolfensberger, 1972, p. 40)

In his analysis of the living conditions of people with intellectual disability in institutions in the 1970s and before, Wolfensberger (1972) described various other ways where architecture and design of a building creates an atmosphere where the residents are expected to act in primitive, uncontrolled ways – in subhuman ways. Examples of such design solutions are walls, floors and furniture made of indestructible materials, as well as locked areas and living units in remote locations. These kinds of solutions have the intention of minimising the risk of self-harm or harm to others. In reality, they first and foremost exclude living conditions that could in any way be depicted as cosy, and minimise the possibility of residents having any natural encounters with ordinary people. Also, since individuals with PIMD have been perceived as subhuman, they have not been believed to be capable of meaningful choices. The possibility to express control in traditional institutions over one's environment has been very limited even regarding such basic things as lighting, as well as water and room temperature, which were often controlled mechanically, or by the members of the staff. And, since the residents have been seen as lacking judgement and capacities for rational decision-making, they have had no genuine rights to things such as privacy (e.g. toilets and bedrooms had no doors), property (e.g. great limitations to space and access to one's own possessions, no entitlement for payment for one's work), communication and individuality (e.g. being managed in groups when, for example, showered and toileted) (Wolfensberger, 1972, pp. 64–66).

Currently, individuals with PIMD live mostly in group homes that are in no way comparable to institutions like Willowbrook when it comes to spaciousness, hygiene and medical care. But, when considering the living conditions of our research participants, some similarities prevail. One of them is the institutionlike aesthetics in many group homes; in those places one does not feel like entering someone's home but a reasonably pleasant hospital ward. Unlike in the UK or Australia, for example, in Finland group homes are commonly still located in purpose-built separate housing units that usually more closely resemble nursing homes than private homes. The premises are built and owned either by the local council, a private company or a third-sector care provider organisation. These units are often designed by architects who have specialised in designing care spaces rather than homes for people. This tradition is very much present in the building projects that take place as part of the ongoing deinstitutionalisation process. While these problems have been recognised in the public discussions concerning deinstitutionalisation in Finland, the tradition of building care units primarily according to the requirements set by functionality prevails (Mietola, Teittinen & Vesala, 2013). One key question is whether the new homes should be designed and built on the terms of the staff (building functional working spaces for them) or the residents (providing them with ordinary homes). The interests of the staff and residents may be seen to conflict with one another, especially in the case of houses for persons with extensive needs, who require special equipment and aids.

It was obvious in the case of some group homes in our study that they had been designed to be sites for care work rather than ordinary homes. The first appearance of these spaces was that they were functional but dull, and that looked and felt like small-scale hospitals rather than someone's home (see Clement & Bigby, 2010, pp. 73–76, 82–85, 90–92). They were often dominated by corridors and wide-open spaces, with very little furniture in the common areas. In two of the four group homes in our research, the kitchen area (the residents had no kitchen in their own apartments)28 was either closed from the residents (considered a staff-only space) or designed to be inaccessible for wheelchair users and thus made impossible for them to participate in preparation of the meals. In two of the units, there were observation cubicles (called offices) near the entrance, with windows opening to corridors that enabled the staff members to observe in- and outgoing residents.

28 Typically, group home apartments in Finland have a provision for a kitchen but they are often not built, especially in the case of persons with PIMD. Their apartments are typically 20–30 square metres (sometimes smaller), consisting of a room and a bathroom.

Alongside these obvious markers of institutional design, in some of the group homes the institutional atmosphere was amplified by the decoration (or the lack of it) in the common spaces of the group home. In one of the group homes, for example, the large living room that was connected to the dining area had a TV, a small sofa, and a beanbag placed along the walls of the wide space. The residents were usually sitting in their wheelchairs, placed in-between the TV and the furniture. The sofa was rarely used by either the residents or the care workers. All in all, the living room was not inviting or homely in any conventional meaning of the word – it was more of a lobby or entrance hall, looking and functioning better as a through-passage than as a living room. In another group home, the living room was not really a room but more of a narrow space in-between a corridor and a dining area, with a big electric box (with a sticker saying '*sähkökaappi*' ('electric box')) placed on the wall, behind the sofa. Moreover, the sofa was facing the TV, which had Plexiglas covering it.

Considering the institutional architecture and decoration devoid of beauty in many group homes, an analogy to a modern, clean cowhouse is not far-fetched; cows cannot appreciate beauty, can they? If persons with PIMD are assumed to lack aesthetic sensibilities, it would seem pointless to spend resources on attractive furniture, colours or art. If they are like cows, why bother? It needs to be pointed, however, that many group homes are different and base their living conditions on the premise that the aesthetic environment makes a difference in the lives of those with PIMD. So, alongside dull, institution-like group homes, we have witnessed group homes that are architecturally ambitious both in terms of functionality and aesthetics, and where attention has been paid to interior architecture and design, as well as seasonal decoration (e.g. Halloween, Christmas) that has been planned and implemented together with the residents.

#### **Warehousing versus caring**

The second, and perhaps the most important, similarity between notorious institutions like Willowbrook and some current institutional arrangements is the lack of programme, method and purpose. Consider the following example of a visit to a day activity centre. Reetta and Simo arrive at the centre around noon and find a group of persons with PIMD (including one of our research participants) sitting by themselves in a room with music playing while the staff were having a coffee break in the room next door.29 The staff continued their break for another 30 minutes or so, and, after that, they wheeled their 'clients' to another room and announced that now was the time for a music session.

What followed was some 45 minutes of music videos shown from YouTube. The music videos (which were mostly Finnish 'teenage pop') were picked by the care workers according to each participant's taste in music (based on the evaluations by the care workers together with the music therapist that visited the day centre once a week). The videos were projected onto a screen while the participants were held by the care workers, or sitting by themselves in their wheelchairs. Irrespective of the interaction between the care workers and the participants, the session's atmosphere felt mechanical, almost apathetical. Reetta witnessed similar music sessions where the persons with PIMD were left on their own to listen and watch videos while the care workers did paperwork. The problem with these kinds of session was that they were executed for groups without consideration of individual differences (for example, some of the participants had significant visual impairments, which made us wonder whether showing videos was the best way to engage them with music).

What was typical of this day activity centre was that, while they did have written plans and 'timetables', too often the activities were carried out mechanically and indifferently, with little consideration of the differences of the service users' capacities and preferences. Too often, it seemed that these 'activities' were completely random, just a way of killing time. Exceptions to these dull routines were the sessions provided by some external professionals like music or physical therapists, who once a week came to the centre to meet some of the clients individually. However, it needs to be remembered, once again, that the staff members

29 They were usually the same couple of records playing that could be best described as muzak or elevator music (e.g. panpipe versions of easy listening hits).

in day centres can do only as much they realistically can. They repeatedly complained about sudden changes in staff due to, for example, sick leave. Some day centres were not even allowed to hire replacement workers. Thus, even in cases where there were planned activities, they had to be cancelled or modified due to the lack of staff resources. These kinds of problems were typical of both day activity centres and group homes.

We would argue that the kind of service culture that has no clear programme or method does not provide proper care for persons with PIMD. What it does provide is what could be depicted as warehousing services. Just like some reasonably well maintained dwelling places for livestock (e.g. piggeries and cowhouses), these kinds of group home and day centre are merely expensive warehouses that provide very little activity or dignity to persons with PIMD. Also, the music sessions we witnessed reminded us of the way music is sometimes used with animals; music can be played, for example, to make cows voluntarily approach an automatic milking system (Uetake, Hurnik, & Johnson, 1997), improve the welfare of laboratory animals (Alworth & Buerkle, 2013), or mitigate stress for kennelled dogs (Kogan, Schoenfeld-Tacher, & Simon, 2012). In other words, the function of music in all the aforementioned cases was not to make people with PIMD, milking cows, laboratory rats or kennelled dogs learn something, to provide them with means of development and change. The function of music in all these cases was to keep the human and non-human animals content and docile.

When it comes to living arrangements, however, it needs to be remembered that the group homes are, as the name suggest, our research participants' homes, and, when you are at home, it is important to have the opportunity to do absolutely nothing. People usually do not want their homes to be like activity centres, with timetables and directed activities. However, the problem with many of our research participants is that they need assistance even in 'chilling out', because they need help with virtually anything that includes choices of some sort. The crucial point is to judge whether certain kinds of living or activity arrangements enable a good life, or whether their actual function is to maintain the system's conviction in its own legitimacy; are their practices merely 'good enough', like patches on a sore that would need more thorough care?

#### **PIMD as a menace**

One dimension of the animality of persons with intellectual disability is the view of them as menaces, as threats to the safety of other humans (Wolfensberger, 1972, p. 67). In the early 20th century especially, intellectual disability was not only linked with various social vices but seen as a prominent and persistent cause of those vices (Trent, 1994, p. 141). People with intellectual disability were seen sexually promiscuous, breeders of feeble-minded offspring, and victims and spreaders of poverty, degeneracy, crime and disease. In other words, they were responsible not only for the corruption of the genetic stock but also for the degeneration of common morality and, ultimately, the ruin of the whole of civilisation (Metzel, 2004, p. 425; Rothman & Rothman, 2004, p. 449). In order to prevent them from spreading 'misery, pauperism, degeneracy and crime' (Trent, 1994, p. 142), it was morally and politically pivotal to confine individuals with intellectual disability to segregated institutions, where their alleged immoral tendencies could be controlled more efficiently.

Now, the eugenic and moral hysteria of the early decades of the 20th century has calmed down, and people with PIMD live increasingly in ordinary residential areas due to deinstitutionalisation. But, still, they are often anything but welcomed by their neighbours. The view of people with intellectual disability as a menace to social order and morality is still one element of the not-in-my-backyard mentality (e.g. Dear, 1992); they are seen to lack control of their impulses, which makes them unpredictable and potentially violent (Wilkinson & McGill, 2009) – a view well presented in John Steinbeck's *Of Mice and Men*, where Lenny, a benign man with an intellectual or learning disability of some kind, unintentionally kills a young girl because he could not control his physical strength when trying in panic to prevent her from screaming. Persons with PIMD, however, have multiple impairments and often very limited mobility, which means that they do not pose a physical threat to others. Rather, they are seen and experienced as a nuisance in that they cause inconvenience to other people, like to the young care worker in a group home in our study, who once snapped loudly with frustration, 'Oh no! He's pissed himself again!' when one of the residents wet his trousers (luckily, these kinds of incidents were not common). Also, some practices were clearly based more on the interests of the care workers than those of our research participants. For example, Ella was fed at her day centre, whereas at home she was allowed to eat by herself, and make a mess and be covered in food afterwards. Because of this, she took a shower at least once a day. In some other group homes, things were different; the residents were allowed to take a shower according to a set timetable (e.g. once every three days), which undoubtedly was more convenient for the staff.

But often the menace caused by a person with PIMD to others can be a matter of emotional inconvenience, as in the case of sexuality. Wolfensberger (1972, p. 167), for example, concluded that one reason that the sexuality of those with intellectual disability makes us feel uncomfortable is that 'such individuals are not fully human, and though perhaps capable of mating like animals, they cannot "marry"'. In other words, the sexual acts and desires of people with PIMD can be perceived as animal acts and desires because allegedly they are not capable for deep emotional connection or respect towards their possible sexual partners. If human sexuality is not merely a matter of pleasures of sensation but about activities that involve intentional pleasure and thoughts pertaining to it (Primoratz, 1999, p. 22), or if it is about the mutual recognition of arousal between persons (Nagel, 1979, pp. 39–52), individuals with PIMD are not capable of experiencing *human* sexuality, let alone having *human* sex. They are exhibiting bare animal lust. Such conception would be only logical if those with PIMD are not seen as fully human, and incapable of experiencing romantic and erotic relationships in a spiritual sense of the word (whatever that may mean), or at least not suitable sexual subjects. When confronting sexual manifestations in the case of PIMD, doubt or even aversion may seem natural reactions. Just like in the case of children or animals, to regard persons with PIMD as sexual beings is socially inappropriate and prohibited. Considering this, it is hardly surprising that it feels perverted to see anything sexual in people who are widely portrayed as asexual and consequently have been desexualised (Hunt, 2018, p. 63).

## **Conclusion**

In this chapter, we have analysed profound intellectual and multiple disabilities in terms of animality. The motivation for this endeavour has been normative: to see whether such an engagement would provide helpful ways to represent the everyday lives and lived experiences of people with PIMD. Therefore, the first part of the chapter was dedicated to normative discussion on whether conceptualising PIMD in terms of animality is accurate, fruitful and ethically justified. In other words, would it be intellectually, ethically and politically useful to conceptualise disability (and especially PIMD) as an animal-like condition in terms of individuals and their characteristics, or, alternatively, in terms of cultural and societal beliefs and practices? In the latter part of the chapter, we aimed to do just this: analyse the quotidian lives of persons with PIMD as animalised lives. Was that helpful? Does such conceptualisation have any other than mere shock value? After all, to say that people with PIMD live like cows is more likely to get a reaction rather than a mere 'their living conditions are dull and institution-like'. These kinds of concerns are anything but trivial. They are examples of the research ethics discussed in Chapter 2; what kind of knowledge research produces about persons with PIMD, and what impact it potentially has on their lives.

We continue to have mixed feelings about the metaphorical use of animality when analysing the lives of persons with PIMD. Analysing the lived experiences of a group of disabled people by comparison to some other group of people is not uncommon ('people with a given impairment are like…') but when such comparison is extended to non-human animals one cannot help but ponder whether we need to compare disabled people and their lives to anything at all. Are such comparisons necessary to enlighten their lives and to help other people engage with them? We are, however, inclined to think that such comparisons, even to animals, may be helpful intellectually and, to some extent, ethically as well, as they may help us to engage with the dullness and brutality of the institutionalised everyday lives of persons with PIMD. This notion relies on the assumption that metaphors may be helpful in terms of ethical engagement despite the fact that they have force for better and for worse (e.g. Fraser, 2018). It would not be far-fetched to argue that making comparisons between disabled people and non-human animals would support the kind of understanding where disabled people are, in fact, seen to be like animals. And, if they are seen to be like animals, it would seem justified to treat them like animals, that is, as creatures that can be used as mere instruments to gain profit or as dispensable objects that can be eliminated should they have no instrumental value. Such a horror scenario may or may not be exaggerated.

But, despite these reservations, Grue and Lundblad (2020) are right to point out some common interest for animals and those people who cannot 'speak for themselves' in a culture where the ability to express one's voice is seen as a precondition for citizenship and moral standing. Even disability activism has worked on the terms of those who are articulate and has excluded individuals with PIMD and other conditions who have very limited capacities to express their own voice. If the principle 'nothing about us without us' is strictly applied, and if nobody else has the legitimacy to speak for persons with PIMD than themselves, they will have no voice, no social standing whatsoever. It would not be implausible to assume that, if one engages with the lived, personal experiences of those who cannot speak for themselves in any conventional sense of the phrase, one would become more receptive to those experiences irrespective of that being's species. Or, as Grue and Lundblad (2020, p. 125) argue, 'in seeking acceptance for one's humanity, there is little to be gained in looking beyond one's species. But if the goal is, rather, to seek acceptance of one's vulnerability, it may be inevitable.'

# **Chapter 8: Conclusion**

When we began this study, our aim was to make sense of persons with PIMD – not just to understand their everyday lives but also to understand something about their inner lives. We soon realised, however, that we needed to be methodologically humble and acknowledge that we could not provide any kind of 'objective' account of our research participants, let alone their mental states. What we could do was to take part in their lives, observe empathetically, and try to understand and report the best we can what goes on in their lives. Through such an engagement we hoped to gain some understanding of what makes a life go well for persons with PIMD, or what a good life could mean for them.

What did we see happen in the lives of persons with PIMD and in the practices of the care system? We discovered that, in the everyday lives of our research participants, a good life materialises only in a very limited sense. Key factors that have contributed to this state of affairs are the following: (1) the institutionalisation of lives of people with PIMD; (2) the social isolation experienced by some service users; (3) that the lives of our research participants are encompassed by the disability service system; and (4) that the people we came to know often lived non-individualised and non-personalised lives.

*Institutionalised lives*. The lives of the people with PIMD who participated in our study, and, we believe, the lives of people with profound intellectual and multiple disabilities more generally, were embedded in institutional practices and routines that determined what and when happened in their lives. A consequence of this is that very little, in fact, happened in their lives: the rhythm and content of their everyday living was structured by basic care tasks

#### **How to cite this book chapter:**

Vehmas, S. and Mietola, R. 2021. *Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability*. Pp. 177–184. Stockholm: Stockholm University Press. DOI: https://doi.org/10.16993/bbl.h. License: CC-BY 4.0.

like dressing, feeding and toileting. Care workers characterised the people they cared for as having narrow lives (*kapee elämä*)*.*

*Socially isolated lives*. While all the research participants were constantly surrounded by other people (in that they lived in group homes and participate in day activity centres), they had little genuine opportunities for social interaction. Social isolation is particularly pronounced in those group homes and day centres that serve only people with severe or profound intellectual disability. In these contexts, usually all service users are in need of support in interaction. But, with very limited staff resources (each care worker is in charge for several people simultaneously), chances for assisted communication and interaction are slim.

*Lives encompassed within the disability service system*. Despite the fact that all the research participants lived in ordinary neighbourhoods (their group homes were located in suburban areas), they were not included in the community in any way. They spent the overwhelming majority of their time in the group home where they lived and the day activity centre they participated in. They usually moved between their home and day centre with accessible taxis. Only seldom did they use public transportation. Their presence in the public space was very circumscribed. The research participants interacted socially almost exclusively with the staff members, other service users and sometimes their family members.

*Non-personalised, non-individualised lives*. Owing to the way services in Finland are currently structured, the research participants had virtually no say concerning their everyday lives – not even about something as basic as what and when to eat. The principle of self-determination thus played barely any role in their lives. The services, furthermore, also neglect different aspects of service users' personalities and individual needs. For example, chronological age is not taken into account when services are planned or delivered. This means that our research participants who are of different ages lived fairly similar lives. Their lives were determined by their impairments and the institutional responses to their 'impaired existence', not by their personalities.

The reality that this summary portrays is undoubtedly grim. While, as we noted in the introduction, major advancements have taken place since the early stages of Finnish intellectual disability care, the personalities of people with profound intellectual

disability continue to disappear under the PIMD label. We began this book with an anecdote related to the definition of PIMD and the significance of it. Conceptualisations of profound intellectual disability are important because, as our discussion (especially in Chapter 3) shows, conceptions of competence make a significant difference in how care work is organised and implemented. The fact that persons with PIMD are as diverse as any other group of people is acknowledged and highlighted by care workers. But this awareness among the staff had no recognised status in the care system, which was directed by a diagnostic ethos where the individuality of our research participants was often ignored. As a result, the practices and activities in group homes and day activity centres reproduced a homogenous group of people with a capacity to appreciate, generally speaking, only sensory stimuli. Care workers emphasised that many of those people who have profound intellectual disability have a capacity and desire for social interaction. However, in most group homes this desire was ignored – a circumstance that, in our view, was not only due to insufficient staff resources. Rather, it was the result of a warehousing mentality in which the threshold for an acceptable standard of care meant keeping the residents fed and clean. Everything beyond that was optional.

One challenge for us during the writing process of this book was to provide a balanced account that would analyse and represent the lives of our research participants with respect without falling into sentimentality: how do we address various ethical and practical issues that are intellectually difficult to resolve and emotionally uncomfortable to deal with, such as the grounds of moral status and issues to do with sexuality? And how do we represent the lives of persons with PIMD in a way that simultaneously acknowledges their limitations and illuminates their capabilities: the things they *can* do, and possibly *could* do, if they only were given the chance? This difficulty was expressed in care workers' accounts as well. Staff members emphasised the individuality of persons with PIMD, but at the same time they hesitated to say what they thought our research participants were in fact capable of understanding. Caution in making detailed descriptions of the individuality of persons with PIMD seems reasonable considering that one is talking on behalf of people who cannot speak for themselves. In our view, such caution implies a commitment to epistemic modesty in order to avoid romanticised, stereotypical or prejudiced portraits of people with PIMD.

This book has offered critical accounts of the Finnish disability services and the care work provided for people with PIMD. However, our analyses and descriptions are unlikely to surprise care workers, because they are in line with the views they themselves expressed to us. In this sense our study presents the critique that already exists within the contexts we have researched. It elaborates and extends that critique, and presents it to a wider audience.

Our findings show that the current practices and circumstances are not completely in line with the current Finnish policy commitments regarding equal moral worth, rights and opportunities. Despite criticising the service system, professionals in all our research contexts were, interestingly, confident that their practices were good, and that they provided appropriate living conditions for their service users. Had they not believed in their ethical and professional standards, they most likely would not have let us access their workplaces in the first place.

We did not witness any mistreatment or abuse of the service users during the fieldwork. Our general impression was that the people with PIMD we worked with were treated with respect and that they were provided with appropriate basic care. Despite the lack of social engagement in our participants' lives, which we discussed in Chapter 4, we also witnessed some care workers' affectionate attachment and responsiveness to our research participants. While the shortcomings of the care culture in many group homes and day centres were evident, some of the care workers' skill in interpreting our participants' communication, as well as their commitment to their work, was impressive. Group homes and day centres are different, and so are the people working within them.

We pointed out in the introductory chapter that humanities and social science-based disability studies has largely ignored people with PIMD. While some advancement has taken place in terms of including persons with PIMD in disability studies research (Nind & Strnadová, 2020), people with profound intellectual disability are still by and large left 'out in the cold' (Chappell, 1998). Such negligence is difficult to reconcile with the political and epistemic premises of the field. It is, after all, one of the crucial aims of disability studies to make sense of how disability materialises as an antithesis for ideological concepts such as ability, norm and normalcy and how those concepts are constructed in ways that 'create the "problem" of disabled person' (Davis, 2013b, p. 1). By unpacking the social construction of such concepts and their manifestations, we are better equipped to contemplate what it means to be disabled and what it means to be human (Goodley, 2014, p. x), and how people with impairments are 'disabled by society's failure to accommodate their needs' (Barnes, Oliver, & Barton, 2002, p. 5). Thus, disability studies has redefined physical and intellectual impairments as a political issue instead of being just a personal, medical problem, and it has insisted that disability is an issue of social justice (e.g. Abberley, 1987; Linton, 1998; Shakespeare, 2006; Watson & Vehmas, 2020).

In order to understand what it means to be a person with PIMD, one needs to engage critically with the individual and the social dimension of disablement. In other words, we need to 'recognise the profundity and complexity of what is going on within the individual, which interacts with disabling environmental and attitudinal factors' (Nind & Strnadová, 2020, p. 2). Persons with PIMD are among those people who force disability studies to reflect upon the meaning and significance of impairment, and the diversity of the disability experience (e.g. Vehmas & Watson, 2014). Such engagement combined with the theoretical tools provided by disability studies can help us to understand PIMD as an issue of ethics and social justice.

For the past few decades, disability studies scholars have argued that non-disabled people's views on disabled lives are often based on the idea that disability equals tragedy (Oliver, 1990). Anyone who has no personal relations of any kind to people like Anna or Sebastian seems likely see them only in terms of their impairments. Such a narrow – indeed, bigoted – view is evident in many philosophical accounts that present persons with PIMD only as examples, as stereotypes, who are defined entirely by what they allegedly lack: self-consciousness, the ability to experience aesthetic pleasure, the ability to perceive and enjoy deep personal relationships, and so on (e.g. McMahan, 1996 – see the discussion in the following appendix). As we saw in Chapter 3, care workers told us that it takes time and effort to learn to know people with PIMD as persons – people who have their own unique 'mixture of odd talents and personal quirks', as Ferguson & Ferguson (2001, p. 71) put it.  A faceless figure with no recognised personality does not necessarily require emotional or moral consideration, the kind of response that would acknowledge his or her equal moral worth.31 When an individual with a character 'behind the impairment' (as the care workers we worked with liked to put it) begins to emerge, it becomes difficult to dismiss that person in a moral sense. He or she needs to be treated like a person – someone who is valued for his or her own sake, whose happiness and well-being are taken as intrinsically important (Ikäheimo, 2009). In the case of persons with PIMD, such recognition requires a conception of personhood and well-being that transcends individual capacities. It is clear that, for persons with PIMD, well-being and the possibilities of a good life are, to a great degree, enabled or neglected by other people. Even their individuality, with its related wants and wishes, requires other people's recognition in order to materialise.

30 Interestingly, Eva Kittay describes her daughter Sesha in a way that is somewhat similar to how the care workers depict Ella, as being charming (e.g. Kittay, 1999, p. 151). Eva also told Simo in personal communication how her friend, the well-known psychologist Walter Mischel, once told her that Sesha has great survival skills 'because she knows how to make people love her, and that is the most important survival skill of all'.

31 People's moral consideration in this respect varies. Consider, for example, responses to the 2004 Abu Ghraib torture pictures, which mostly caused outrage but were minimized by many conservative commentators (Tétreault, 2006).

People with profound intellectual and multiple disabilities are no longer referred to as 'blockheads' or 'creatures at the lowest level' (Harjula, 1996, p. 64), nor is their dignity violated as grossly and openly as it was as recently as 50 years ago, when they were forced to live in inhuman conditions. But, despite all the practical and moral advances, some ethically problematic features remain in the lives of people with PIMD.

The first is the concern over their moral value: what kind of value is accorded to them, in both theory and in practice. Estimation of the value of people with limited cognitive capacities has changed only little in mainstream Western philosophy over the past 300 years. Since John Locke, human value has been based upon a psychological conception of personhood that posits capacities such as rationality and language as *the* property that make human beings distinctively human. The second, related concern is that people with profound intellectual and multiple disabilities are still seen as animal-like and, as we discussed in Chapter 7, perhaps even treated like animals. This materialises in a care culture that settles for warehousing. When people with PIMD are not considered to be human beings proper, they are not given the opportunity to experience and explore activities and experiences that commonly are usually valued by humans (such as aesthetic pleasures, or sex). This kind of care culture is a continuation of the long tradition of institutionalisation where disability services are run on the conditions set by the service providers rather than service users.

The general picture that we drew from our data is that persons with PIMD are not provided with possibilities to live a good life in the sense that they might flourish as individuals. Instead, the service system settles for a 'good enough' life, which means that the function of the services is to keep these individuals fed and cleaned properly. Too often, that is all. This is a kind of warehousing mentality that sees persons with PIMD as static individuals with predefined, age-independent, deindividualised needs, interests and skills.

This book has shown that this mentality has resulted in narrowed lives. But we have also argued that this is not an inevitable state of affairs, predetermined by the impairments of people like Anna, Ella, Frida, Hugo, Leo and Sebastian. Instead, their lives are to a large extent determined by disability policy, care culture and ethical engagement, or the lack of it. Thus, in order to properly understand the lives of persons with PIMD, we also need to critically engage with *our* moral values and social arrangements.

In other words, it is not just about them. It is about us, too.

# **Appendix: On Moral Status**

*By Benjamin L. Curtis and Simo Vehmas*

#### **Introduction**

As was explained in the first chapter, our research project and this book were initially motivated by philosophical debates regarding the moral status of people with profound intellectual disability. Someone unfamiliar with philosophical discourse may find these debates bizarre at best, for at least two reasons. The first is that a mere speculation about the moral status of persons with PIMD in any other way than affirmative may seem offensive. The other reason is the fact that philosophers often do not bother to communicate their ideas in an accessible manner, which may make their philosophising seem abstruse and insular. While we have tried to do our best to write on these issues as clearly as we could in earlier publications (e.g. Curtis & Vehmas, 2016a; Vehmas & Curtis, 2017), we have probably succumbed to an unnecessarily technical style of writing as well. Having said that, the issue of moral status is notoriously complicated and it is very difficult to do justice to the whole complexity of it without a degree of technicality. In this appendix, we aim to discuss the issue as clearly as we can and explain what the philosophical issues involved are. Where the material is technical, we try to spell out the concepts involved in detail. We also try to articulate where we think they go wrong, and why it is important that we do.

The philosophical analysis of this appendix has been a parallel project to ethnography. It differs from the rest of the book in that it concentrates on unpacking the strengths and weaknesses

#### **How to cite this book chapter:**

Curtis, B. L. and Vehmas, S. 2021. *Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability*. Pp. 185–212. Stockholm: Stockholm University Press. DOI: https://doi.org/10.16993/bbl.i. License: CC-BY 4.0.

of different philosophical arguments without discussing the issue in the light of our data. This is simply because we evaluate *normative arguments* and our data cannot either verify or falsify those arguments. What data can do is to provide empirical material for philosophical arguments and show whether philosophers have used empirical knowledge appropriately. But, as such, data cannot prove whether, for example, psychological or relational properties are the normative foundation of one's moral status. In other words, there is no empirical evidence that would tell us, for example, why it would be wrong to kill people for fun. Solving that kind of question requires conceptual evidence.

The fundamental ethical principle that underpins the project that led to this book is that human beings with profound intellectual disability are beings with moral status equal to, and deserving of the same respect as, human beings without them. This principle entails that the interests and well-being of people with PIMD matter as much as anybody else's, and that those of us who do not have such impairments have a duty to understand them better, in order to discover what those interests truly are and how their well-being might be facilitated.

We expect the equality principle will strike many readers of this book as blindingly obvious, or as being in some sense self-evident, or undeniable. We expect this because the equality of *all* humans, no matter what their ability, is often taken to be a foundational moral truth. Its spirit is captured in our fundamental legal documents, and is taken by many to encapsulate the very core of what it is to have civilised values at all. To give just one example, it is captured in the very first line of the Universal Declaration of Human Rights, which reads:

Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world. (UN General Assembly, 1948)

It may therefore come as a surprise to some to learn that, according to the standard view of moral status in the philosophical literature (known as moral individualism), the equality principle is false.  As a being's moral status determines how a being may be treated, one consequence of this is that to farm and eat humans with profound intellectual disability is, in and of itself, no worse (morally speaking) than farming and eating cattle. And another is that experimenting on humans with PIMD is, in and of itself, as permissible (morally speaking) as experimenting on lab rats. Moral individualists recognise that there might be *instrumental* reasons not to do these things (e.g. because it will upset non-disabled people who care about disabled individuals), but there is no non-instrumental reason not to. These consequences are endorsed by those who defend moral individualism. Here, for example, is Jeff McMahan, probably the most prominent defender of the view:

[S]uppose that a certain animal lacks any status-conferring intrinsic property that would make it impermissible to kill that animal as a means of saving several people's lives. Suppose further that there are no [instrumental] reasons that oppose killing it – for example, it is no one's pet. … According to moral individualism, if it is permissible to kill the animal, it should also be permissible – again assuming no [instrumental] reasons apply – to kill, for the same purpose, a human being who also lacks any relevant status conferring intrinsic properties. (McMahan, 2005, p. 355)

We expect many readers will find these consequences morally shocking, and may even think that anyone who endorses them thereby betrays some gross moral failing. But it is important to realise that, within the philosophical literature, it is not only a mainstream view; it is the most widely endorsed view and considered standard by many. And this matters, because philosophical views do trickle out from the academy into society, through popular books, or because philosophers sit on ethical advisory panels and are consulted on governmental policy documents with ethical implications. Indeed, McMahan himself sits on such panels, as do other moral individualists. And so it is important that we engage with their arguments in their own terms and attempt to show where they go wrong.

We expect that many readers of this book will be tempted by a very quick response to moral individualism. This is to simply stamp one's foot and declare 'We *know* all humans have an equal moral status, and that's the end of it!' But we want to urge against giving *only* this kind of response. It is not that it is a *bad* response. In fact, as we will see, it is a fundamentally sound response and one that is important to make. But the point is that we should also be interested in taking moral individualism and the arguments in favour of it seriously. We should not be content with saying *that* moral individualism goes wrong, but also attempt to say *where* it goes wrong. If we are to deepen our moral understanding of human equality itself, and our understanding of the moral value that humans with PIMD have, a close examination of these arguments is essential.

Before we begin the main discussion, we wish to include a few words of autobiography, for reasons related to what we have just said, and for other reasons that will become clear. We (Benjamin and Simo) have been working on the issue of moral status and profound intellectual disability since 2010. We began working together precisely because each of us recognised the influence of the arguments put forward by moral individualists against the equality principle, but we also shared the feeling that their conclusions are morally shocking, and that therefore those arguments *must* be wrong. But, in the spirit of intellectual modesty, we admit that since then we have struggled to say *precisely* where the arguments of the moral individualists do in fact go wrong. In a pair of early papers we developed an account according to which moral status can be grounded in relational terms (Curtis & Vehmas, 2014; Vehmas & Curtis, 2017). It is a position that we now, at least partially, reject. However, as we will explain, we do think that that position contained a kernel of truth, and we now think that we have at least the beginnings of a correct response to moral individualism. And so in this appendix we outline the point that we have arrived at. We also admit that we have no *fully*

worked out answers and that there is much work still to be done in this regard. The outlines of an alternative position are now becoming clear, but our work here is ongoing, and we still need to work out its details. At any rate, we hope that this appendix gives the reader a good sense of the philosophical debate we are engaged in, its importance, and where we now stand in that debate. We also hope it makes clear that the overall empirical project from which this book issued has serious philosophical underpinnings.

The structure of what follows, then, is this: in Section 1 we first explain and defend the idea that we can continue to accept the truth of equality without giving a detailed positive account of its truth, and reject moral individualism without being able to say where it goes wrong. Given what we have said above, we nonetheless recognise the importance of saying where moral individualism does go wrong. In Section 2 we explain the basic principle that underlies the moral individualist position: the principle that an individual's moral status must be grounded in the possession of intrinsic properties alone. In Section 3 we explain why moral individualists think that the only intrinsic properties that can do the job are psychological properties, and show why this leads to the rejection of equality. Then in Section 4 we consider what seem to be the only two possible responses to moral individualism – to maintain that all humans are psychologically equal in some important respect, or to adopt a relational account of moral status. We reject both of these responses, but then in Section 5 argue that there is in fact a further (third) response available that has been overlooked. This is to accept that intrinsic properties are important, but that their *significance* can be relational. We think that this response holds great promise. Finally, in Section 6 we finish by saying a little about how we think it might be developed.

#### **1. Equality as a Moorean moral belief**

We have already noted that we suspect many readers will be tempted by a quick response to moral individualism, i.e. to reject the view *without* saying where it goes wrong. Although we have also said we urge against giving *only* this response, we have also said that this response is fundamentally sound and one that it is important to give. Why is it important? Because moral individualists have a very well worked out, unified theoretical position, one that has been developed in a great amount of detail and that is agreed upon by many working in the field. Jeff McMahan, mentioned above, has provided what is, in effect, a book-length defence of the view in *The Ethics of Killing* (McMahan, 2002), supplemented by numerous journal articles (e.g. McMahan, 1996, 2005, 2008, 2009, 2016). And many other philosophers, including James Rachels and Peter Singer, have book-length defences of the same basic view, supplemented by numerous further journal articles of their own (e.g. Rachels, 1987, 1990, 2002, 2004; Singer, 1979, 1989, 2010, 2016). Not everything within their books and articles pertain *precisely* to the issue of moral status and profound intellectual disability. And nor is it the case that the proponents of moral individualism agree on *every* detail of the view. But everything that they have written forms a more or less coherent network of mutually supporting views that also supports moral individualism. And, even if they disagree on some of the details, they agree on the fundamentals.

In short, then, to oppose moral individualism is to oppose a large body of well-supported unified theory. By contrast, the opposition to moral individualism in the literature is largely unsystematic and often theoretically unsatisfying, for reasons we will come to. While many have written rejecting the view, the positive opposing views have been developed in a multitude of ways, in much less detail, and with little agreement on even the broad outlines of what the correct alternative view should look like (for an overview of the multitude of opposing views, see Wasserman, Asch, Blustein, & Putnam, 2017). As such, it is important to give the short answer to moral individualism to thwart the following line of argument from the moral individualists (here we summarise the general moral individualist view of the opposition):

Generally speaking, in every domain of enquiry, we should believe the best current theory. With regard to moral status, that theory is moral individualism. It is true that some have developed other views, but there is much disagreement, and they have not been developed in anything like the same detail that moral individualism has been. As such, the alternative views should be considered promissory notes at best. Until they have been worked out in the same level of detail as moral individualism, and shown to withstand criticism in the way that moral individualism does, moral individualism remains our best moral theory and we should continue to believe it. It is true that moral individualism contradicts the equality principle, and so contradicts pre-theoretical moral beliefs, but sometimes we do have to give up our pre-theoretical beliefs when our best theory entails their falsity.

The above line of argument is plausible, but it fails. It fails because, although it is *better* to have a fully worked out response, we are nonetheless entitled to reject moral individualism, at least on a personal level, without having a fully worked out alternative account available. We now turn to why this is so.

While it is true that we may sometimes have to revise our pre-existing moral beliefs in light of theory, there are limits on what revisions are acceptable. Our moral beliefs, like all beliefs, are held with varying degrees of confidence, and so some are more readily abandoned than others. Those moral beliefs that are very hard to give up are our strongly held core moral beliefs, and that a moral theory is consistent with these is more important than its consistency with our more weakly held peripheral moral beliefs. An example here might be the belief that travelling by aeroplane to go on holiday is morally blameless. Moreover, certain moral beliefs are so strongly held that they act as fixed points in our moral theorising. An example here is the belief that kicking another human to death for fun is morally wrong. This is a moral belief such that our degree of confidence in its truth is invariably stronger than the degree of confidence we might have in any proposed moral theory that contradicts it. We call beliefs of this kind our 'Moorean moral beliefs', after G.E. Moore, who argued that certain kinds of belief are immune from revision due to philosophical argument (Moore, 1939). He illustrated this by considering the belief that each of us can express in the first person using the sentence 'I know that I have hands'. There are various radical sceptical arguments that purport to show that this belief is false (the most famous being Descartes's argument that, for all we know, the external world does not exist at all, and we are being deceived into thinking that it does by a demon). But Moore's point was that none of these arguments can ever be successful, for our degree of confidence in their premises can never outweigh the degree of confidence we have in the existence of our hands. In just the same way, we think that the belief about kicking human beings to death for fun is not merely a widely held pre-existing moral belief but a Moorean moral belief – it is a belief that is so central to our moral outlook that it simply not open to revision in the light of theory. More to the point, we think that equality *also* captures a Moorean moral belief. Thus, one can be confident that moral individualism is wrong, and reject it, even if one does not have a fully worked out alternative theory to offer in its place.

Of course, moral individualists might respond to the above by pointing out that they themselves deny equality, and that, as such, it cannot be a Moorean moral belief (otherwise, they might say, they would *not be able* to deny it). Our response to this is to note that moral individualist views are formed in something of an empirical vacuum. It is easy enough to deny the Moorean nature of equality and to maintain the lower moral status of humans with profound intellectual disability only so long as such humans are thought of in the abstract, and only so long as one has little physical contact with, and little first-hand knowledge of, what such humans are really like. But we do not think that anyone who has actually spent time getting to know humans with profound intellectual disability could deny that they have the same moral status as non-disabled humans, and so deny the Moorean nature of equality.

To summarise, our basic position is this: our belief in the principle of equality is a fundamental moral belief of such importance that we are entitled to hold it to be true even without having available a theoretical justification for it. In addition, we are personally entitled to reject any moral theory that contradicts it without saying where that theory goes wrong. And so, because moral individualism does contradict equality, we are personally entitled to reject it without saying where it goes wrong. However, for the reasons given above (i.e. because moral individualism is such an influential view), it is also important that we *do* examine where moral individualism goes wrong. And so it is to this task that we now turn.

#### **2. Grounding moral status**

It is worth noting to begin with that moral individualists agree, at least to some extent, with what we have said above. Although they do not think equality captures a Moorean moral belief, they do recognise that it is a highly intuitive principle, and that rejecting it leads to accepting highly counterintuitive consequences like those we signalled in the introduction (e.g. that to farm and eat humans with PIMD is, in and of itself, no worse than farming and eating cattle). They also agree that our moral theories should cohere, in large part at least, with our intuitive moral judgements. However, they think that (in the absence of any other plausible moral theory) moral individualism is strong enough to warrant believing it true, and so strong enough to give up belief in the principle of equality, and to accept the highly counterintuitive results. The basic principle that they invoke, they think, is itself highly intuitively plausible, and allows us to explain a huge number of our pre-theoretical moral beliefs. And for this reason, they think, we should accept that it is true. What, then, is this basic principle? It is this:

Status intrinsicality: An individual's moral status must be grounded in its possession of morally relevant intrinsic properties.

Moral individualists then argue that it is only an individual's intrinsic psychological properties that are morally relevant, and that individuals with profound intellectual disability do not possess such properties sufficient to ground a high moral status. So, they think that the principle of equality cannot be maintained. Let us spell out this view in more detail.

We start off with the idea of 'grounding'. Status intrinsicality contains the notion that moral status must be 'grounded' in further properties. What does this mean? The general idea is that a property needs to be grounded when that property is not a simple unanalysable one, that is, one that cannot be defined or explained in terms of any more basic or simple property. Plausible examples of properties that are simple and unanalysable, and so do *not* need to be grounded, are the fundamental physical properties like mass and charge. For example, electrons are taken by physicists to be fundamental particles – they are not 'built up' from any more fundamental particles. They are basic carriers of charge, specifically negative charge. So, physicists say that electrons are objects that possess the property of *having a charge of −1*. The 'having of this property' is not explainable in any more basic terms. It is simply a brute fact of nature: electrons have such a charge, and that is all there is to say about the matter.

To return now to status intrinsicality, the principle states that an individual's moral status cannot be fundamental in the same way that an electron's negative charge is fundamental to it. The idea is that there must be something more we can say, some further property or properties in terms of which its possession by an object (in this case a person) can be explained. It is useful to consider some simple examples to illustrate. Consider shape properties, for example the properties of *being square* and of *being round*. These are properties of macroscopic objects – TV sets are square, and beach balls are round, for example (very roughly speaking). But, we can ask, are these simple, unanalysable properties of these things, or are they *grounded* in some more fundamental properties? And here the answer is quite clear. They are *not* simple unanalysable properties.  That is to say, being made of particles arranged squarewise *explains* why TV sets are square, and being made of particles arranged roundwise *explains* why beach balls are round. Thus, shape properties are *grounded* in the further property of being made up of particles arranged in a certain way.

However, there is more we can say about this simple example. *Being square* and *being round* are both *intrinsic* properties of objects. That is, whether an individual possesses the property of *being square* or *being round* depends *only* on the way that thing is in itself, and does not depend on the way that any *other* thing is. Roughly speaking, you can tell that something is square, for example, just by looking at *it*. You do not need to consider any *other* thing. Contrast shape properties like this with familial properties of persons like *being a sibling*. These latter properties, unlike the former, are *extrinsic* or *relational* properties. That is, whether a person possesses the property of *being a sibling* depends on that person standing in relations to *some other thing*. Roughly speaking, again, you cannot tell that someone is a sibling just by looking at *her or him alone*. Barack Obama is a sibling, for example, and this is not a simple unanalysable property of him. But in this case what grounds the fact that he is a sibling is not that he is himself a certain way, but rather that he stands in certain familial *relations* to some other things, i.e. his brothers and sisters. Thus, the property of *being a sibling* is *grounded* in the fact that things possessing them bear certain relations to other things.

The above examples, then, enable us to spell out the moral individualist position more clearly. Moral individualists hold that a person's moral status is, like a ball's roundness, not a simple unanalysable property, and so must be grounded in some further property or properties of the person.  So, they maintain, an individual's particular moral status cannot be grounded relationally, that is, in terms of what relations that individual stands in to other things, but must instead be grounded in the possession of some further intrinsic property or properties of the individual *themselves*.

Let us take stock. So far all we have done is explain the content of the basic principle held by moral individualists, i.e. status intrinsicality. According to that principle, moral status must be *grounded*, and it must be grounded by the possession of intrinsic properties. We have not, as of yet, explained *why* they think status intrinsicality is true. We will come to that in due course. But, for now, let us suppose that it is true, and consider what follows from it.

#### **3. Intrinsic properties as the grounds of moral status**

If we assume that an individual's moral status must be grounded in its possession of further intrinsic properties alone, and we wish to maintain equality, meaning that *all* human beings have an equal moral status higher than that of any non-human animal, it follows that that there must be some intrinsic difference between *all*

human beings on the one hand and *all* non-human animals on the other that explains this. But what can this difference be? It seems that there is no plausible candidate.

One obvious candidate of an intrinsic property that is shared by *all* humans and *no* non-human animal is the purely biological property of *being human* (i.e. of having the genetic constitution of a human being). But moral individualists reject this property on the grounds that a purely biological property is not a morally relevant property. On this score, they have a point. It is indeed hard to see how being made up of cells comprised of certain kinds of nucleic acid sequences could, in and of itself, explain why an individual has any kind of moral status at all. Consider asking: 'Why should I not torture this human being? Why would it be wrong to do so?' And consider the reply: 'Oh, because the adenine, guanine, cytosine and thymine in the cells that make up that person's body are ordered in a special way.' This, it is clear enough, offers no explanation whatsoever (i.e. it is entirely unilluminating).

If intrinsic biological properties cannot do the job, what other intrinsic properties can? Simply put, moral individualists maintain that none can. They think, in short, that there are no morally relevant intrinsic properties that are shared by *all* humans and *no* non-human animals. This is because they think the only kinds of intrinsic property that *can* do the job of grounding moral status are psychological properties. It is only psychological properties, they maintain, that can do any *explanatory* work.

Consider that the intrinsic psychological properties stressed by moral individualists are those such as the capacity to feel pain and emotion, to reason and reflect, to think, to plan for the future, and to regret the past. To see that they can do the explanatory work moral individualists are so impressed by, consider that human beings have the capacity to feel pain. And now consider asking the question we considered above once more: 'Why should I not torture this human being? Why would it be wrong to do so?' Unlike the previous answer we considered (i.e. the one framed in terms of genetic properties), the following answer *does* offer an explanation and *is* illuminating: 'Because it would cause her to feel extreme levels of pain.' If one recognises the badness of pain, one can appreciate that torturing a human being is wrong *because* it would give rise to pain. In other words, that it would give rise to such pain is what *explains* why it is wrong.

Both humans and non-human animals can feel pain, of course, and so the above explanation for why it is wrong to torture a human being also applies to non-human animals. In this regard, then, there is no difference between humans and non-human animals. However, moral individualists do allow that there is a difference between *some* human beings and at least some (and perhaps all) non-human animals – a difference that is grounded, it should now be clear, in a difference in intrinsic psychological properties. Specifically, they argue that the possession of high-level psychological properties (e.g. the ability to entertain propositions in thought, to reason, to form a conception of oneself and one's life as a coherent whole) give rise to reasons to treat those who possess them in a certain way, and that those reasons simply do not hold in the case of those, like some non-human animals such as sheep and cattle, who lack high-level psychological properties. For example, moral individualists argue that their view can explain why it is morally worse to farm and eat human beings possessing high-level psychological properties than it is to farm and eat cattle. What explains this, they can say, is that the former possess high-level psychological properties and the latter do not. Thus, the possession of high-level psychological properties is thought by moral individualists to be 'status-conferring': humans with high-level psychological properties have a higher moral status than non-human animals that lack them.

So, moral individualists want to explain the *general* difference in moral status between humans and non-human animals in terms of the possession of high-level intrinsic psychological properties.  Here there is some disagreement about the details among moral individualists. They disagree about the precise way to spell out *how* the possession of high-level psychological properties confer status in this way. But all are agreed that they *do* confer such a status. To give one example of how this is spelled out, though, we can consider Jeff McMahan's account. He argues that individuals who possess high-level psychological properties have available to them higher levels of well-being. Although non-human animals may lead lives containing simple exuberant joy, for example, humans who possess high-level psychological properties lead lives containing more complex psychological goods, which, he maintains, are therefore *better* lives (i.e. are lives that contain more well-being). Hence, he argues, it is morally worse to kill a human who possesses high-level psychological properties than it is to kill a dog, because the lives that humans lead are better (contain more well-being) that those that dogs lead, and so such humans lose more than dogs do by being killed:

[I]t seems that even adult human life tends to contain its share of exuberant joys that rival in intensity those experienced by dogs. They are simply not so conspicuous as they are within the lives of dogs, where they dramatically punctuate days otherwise given over to torpor and sleep. Human well-being, by contrast, is more continuous, dense, and varied, so that the ecstatic moments, which may be more diffusely spread over longer periods, are less salient. And what fills the intervals between these moments is normally altogether better than the dull vacancy of a dog at rest. … Hence, assuming that a typical person's future would be of a significantly higher quality than that of a typical animal (of whatever species), the conclusion [is]: persons typically lose considerably more good by dying than animals do. (McMahan, 2002, p. 196)

Along similar lines, Rachels (1986) presents the life of Bertrand Russell as an example of 'an extraordinarily full life' (p.   Not nearly so much of this kind could be said about a less sophisticated being. Her death is worse because there are *more reasons* [emphasis in original] for regretting it. (Rachels, 1986, p. 57)

We are now in a position to see more clearly why moral individualists hold that humans with profound intellectual disability have a lower moral status than non-disabled humans, and equal to that of some non-human animals. The reason is that, according to moral individualists, although humans with profound intellectual disability possess the capacity to feel pain (just as both humans and non-human animals do), they lack high-level psychological properties (just as non-human animals such as cattle do, but unlike non-disabled humans). And so, although humans with profound intellectual disability possess *some* status-conferring intrinsic psychological properties, they do not possess those required to confer the high moral status had by non-disabled humans. They are, in this sense, psychologically comparable to non-human animals like cattle.

#### **4. Relational accounts of moral status**

If we agree, as we think one should, that moral status properties are not simple unanalysable properties, then there is an onus upon us to explain its grounds. We do think that moral individualists have a point that purely biological intrinsic properties (like having a certain genetic constitution) cannot by themselves do this job. And we can think of no intrinsic properties other than psychological ones that can plausibly do the job by themselves either. So, how are we to respond to moral individualism? It *seems* that there are only two responses available. The first is to argue that, despite what moral individualists think, human beings with profound intellectual disability *do* possess psychological properties that set them apart from non-human animals and that explain why they have a higher moral status than them. The second is to reject the idea that *only* intrinsic properties can ground moral status, and instead adopt a relational account. We consider and reject the first response, before turning to the second, which will occupy us for the rest of this section. It comes, in fact, in two guises, both of which we will argue also fail. However, considering the second response will enable us to see that there is in fact *another* (i.e. a third) response available, and it is one that is much more promising. We then consider that response in Section 5.

With regard to the first response to moral individualism, then, the salient question to ask is this: is it really true that humans with profound intellectual disability are psychologically comparable to non-human animals? Some scholars have argued that this is not the case, and that, despite suffering from reduced psychological abilities, those with profound intellectual disability still possess a distinctive kind of *human* psychology, which explains their high moral status. Eva Feder Kittay, for example, has written in such a vein about her daughter, Sesha. She writes:

I am not going to rehearse the things that Sesha can or cannot do and what a dog can or cannot do. Such comparisons are otiose and odious as well as senseless. What Sesha can do she does as a human would do them, though frequently imperfectly, but it is humanly imperfect, not canine perfect. However, even with all that Sesha cannot do and seems not to be able to comprehend, her response to music and her sensitivity to people is remarkably intact. Perhaps her responsiveness to music is more than remarkably intact; it is quite simply remarkable.   (I will now stop calling them 'individuals' and begin to speak of those with severe cognitive impairments as the persons I believe they are.) Such unevenness is not a feature of the animals with whom McMahan equates them. (Kittay, 2005, pp. 27–28)

We agree entirely with what Kittay says here. But there is another sense in which we disagree, and it is the latter sense that is relevant to a proper assessment of moral individualism.

The sense in which we agree is this: it is entirely clear from what Kittay writes that her daughter, Sesha, does indeed possess psychological capacities of a sufficiently high level to ground a high moral status (i.e. one equal to that possessed by non-disabled humans). However, this itself is not a relevant fact in criticising moral individualism. Moral individualists are quite clear that they are not using the term 'profound intellectual disability' in any kind of diagnostic sense. That is, they are not claiming that all individuals diagnosed with profound intellectual disability have a lower moral status than non-disabled humans. Instead they explicitly use the term 'profound intellectual disability' (or some other equivalent term) by *definition* to mean 'those human beings who do, as a matter of fact, lack the relevant high-level psychological properties sufficient to ground a high moral status' (see, for example, McMahan, 2005, p. 358 for an explicit statement to this effect).32

We think that moral individualists could have chosen a different way to express themselves in order to avoid confusion on this matter (and to avoid causing undue offence), but this is not a substantive criticism of their position itself. If they are to be shown to be wrong, what needs to be shown is not that some of those diagnosed with profound intellectual disability in fact possess psychological properties of a sufficiently high level to ground a high moral status. Instead, what needs to be shown is that there do not exist *any* humans who lack such properties. And this, we submit, is not credible. Given that profound intellectual disability falls on a spectrum, it seems highly likely that there *do* exist human beings for whom it is not plausible that they possess any high-level psychological properties. Perhaps it can be maintained that such humans do still possess a distinctly human psychology, but this does not mean they are not psychologically comparable to non-human animals in a morally relevant sense. To say that such humans are psychologically *comparable* to non-human animals is not to say they have the psychology *of* a non-human animal, but only that their psychology is at an *equivalently developed* level to that of non-human animals such as cattle. It does not matter whether they have psychologies that are *different* from

32 It seems that moral individualists (at least McMahan) are not talking about people like Sesha when they use expressions such as 'severely mentally retarded'. This raises the question about the empirical relevance of their arguments, which, in our view, moral individualists overlook; in order to have any relevance, the conceptual claims in this context require empirical substantiation (Vehmas & Curtis, 2017).

the psychologies of non-human animals, only that they are comparable in this sense. And so, because it seems likely that there are humans with psychologies that are comparable in this sense, we conclude that the first response to moral individualism fails.

We turn now to the second response to moral individualism. This is the rejection of the idea that it is only *intrinsic* properties can ground moral status. To give this response is to maintain that moral status properties can be like a person's property of *being a sibling* rather than a ball's property of *being round*, and in particular that the high moral status possessed by humans with profound intellectual disability is like this. It is thus to maintain that what *explains* why humans with profound intellectual disability have a high moral status is that they stand in certain relations to other things – that is, to give a *relational account* of moral status itself.

This has been a popular response to moral individualism, and in fact it is one that we have previously defended. Before we come to this, though, first note that anyone who defends a relational account of moral status faces two challenges: (1) to give an account of *which* relations are constitutive of the high moral status possessed by humans with profound intellectual disability, and (2) to give an account of how standing in those relations *explains* why such individuals have a high moral status. The first challenge has been met in a number of different ways by different writers. Some have argued that the relevant relation is simply the biological relation of *co-membership in the human species* (e.g. Scanlon, 1998). Others, recognising that citing purely biological relations face the same kinds of difficulties that citing purely biological intrinsic properties face, have emphasised the idea that it is in fact broadly *social* relations that matter, although the kinds of social relation appealed to differs.33 In an earlier publication, we, for example, called the relevant relation 'the human community relation' and described it as follows:

It is the relation that each of us stands in to each other by being a member of the human community. It is the relation that holds

33 This is the view taken by Kittay (2005) and our previous selves (Curtis & Vehmas, 2014; Vehmas & Curtis, 2017), among others (other examples include Mullin, 2011 and Jaworska & Tannenbaum, 2015).

between a human and the rest of the human community when he or she is born of human parents, brought up and cared for by humans, and in general, treated as a human within the human community. We don't intend the brief list in the previous sentence to be taken as anything like a list of necessary conditions. The relation holds between different individuals and the rest of the community in different ways. It holds between you and the rest of the community because you participate fully within in it. For example, you vote, work, and pay taxes, as well as engage in emotional and social interactions with other humans. It holds between humans with [profound intellectual disability] and the rest of the human community in a different way. They cannot vote, work, and pay taxes, for example [but] it is not *required* that those who are related to the human community *participate* within the human community, in the sense of partaking in those activities that [statistically] normal human beings take part in. All that is required for the relation to hold is that an individual is *taken into* the human community: that he or she is treated by the community as human. (Vehmas & Curtis, 2017, p. 510)

However, we now think a relational view of this kind, no matter which relation is cited as being relevant, cannot be defended. We think this because we now do not think the second challenge can be met. It is not possible to give an adequate account of how standing in a relation of any sort can *explain* why an individual possesses a high moral status (or, indeed, any moral status at all).

To see why this is so, we want to first consider an objection from McMahan to the kind of view we previously defended. We think that the objection fails – but considering it will lead us to a more powerful objection that we think succeeds (as we will see, there is a sense in which it is in fact a *simpler* objection). McMahan's objection, then, is this:

[I]f the only factor that relevantly differentiated [those with profound intellectual disability] from animals with comparable capacities was that [those with profound intellectual disability] are specially related to us, it would follow that it would be permissible, other things being equal, for those who are *not* specially related to them to treat them in the ways in which we treat animals. … This means that, if intelligent and morally sensitive Martians were to arrive on Earth, they would be justified, other things being equal, in treating [humans with profound intellectual disability] in the ways in which we treat animals with comparable capacities. They would, of course, be required to exercise forbearance out of respect for us, for we are (or at least some of us are) specially related to [those with profound intellectual disability]; thus any harms the Martians might inflict on [those with profound intellectual disability] would constitute indirect offenses against us. But this would, it seems, be the *only* reason Martians might have not to subject [those with profound intellectual disability] to forms of treatment that we reserve for animals: for example, eating them, hunting them, experimenting on them, and so on. It is doubtful that this conclusion would be congenial to commonsense intuition. If that is right, an appeal to the special relation we bear to [those with profound intellectual disability] cannot provide a full justification for our treating animals considerably less well than we believe we are required to treat [those with profound intellectual disability]. (McMahan, 2002, pp. 222–223)

In other words, McMahan claims here that, although we might save the view that *we* (i.e. humans) ought not to farm and eat humans with profound intellectual disability by endorsing a relational account of moral status (i.e. such an account would give *us* a moral reason not to do this), such an account is still open to the objection that this would not apply to those (such as intelligent Martians) who do *not* stand in the appropriate relation to such humans (i.e. it would not provide *them* with a moral reason not to do this). If this objection were correct, we think it would show that a relational account cannot work. Our pre-theoretical view regarding the fact that humans possess the moral status that they do, we think, is the view that this is a *categorical* or *objective* fact about them – it is the view that *every possible rational agent in every possible circumstance* ought to treat them with due respect (and so, for example, must refrain from farming and eating them). It is thus not only that *we* ought not to do certain things to individuals with moral status properties that needs to be explained by an account of moral status, but that these things *ought not be done to them by any rational agent under any circumstances*. So, if an account of the moral status of humans with profound intellectual disability (or any other human, for that matter) turned out to allow that some possible moral agent could permissibly farm and eat them, or that there was some possible circumstance in which this was so, then the account must fail. Then it would not deserve to be called an account of moral status at all.34

Now, as it happens, we think that McMahan's objection does not in fact show that relational accounts cannot explain the categoricality and objectivity of moral status, for it is possible to maintain that an individual *can* gain a categorical and objective moral status by standing in a relation to other things. As we put it in our 2017 paper:

The bestowment view, then, is the view that objective [status] can be bestowed upon an individual by its standing in a relation to something else. Once bestowed, that value then functions to bind *all* evaluators, not merely those who stand in the bestowing relation to it. In a case where these values are *moral* values, their being possessed can then give rise to obligations that hold objectively. (Vehmas & Curtis, 2017, p. 508)

However, we also now think that there is an objection that *does* show that a relational account cannot explain the categoricality and objectivity of moral status. In fact, the objection is a perfectly simple one. To see what it is, first note that if any individual's moral status is entirely constituted by the holding of certain relations, then if those relations were to have failed to hold, then that individual would not have had that moral status. Next, note that the kinds of relations cited as constituting the moral status of humans with profound intellectual disability are purely *contingent* relations; they do not hold as a matter of necessity (in any sense of 'necessity'). And so there could be possible circumstances in which those relations do not hold, and humans with profound intellectual disability would fail to possess a moral status. In such circumstances, it would *then* be permissible for

34 We are, in this sense, moral realists. We think that moral reasons are objective and apply to all rational agents. We are aware that many outside of the philosophical literature hold 'constructivist' positions according to which morals are constructed by us, and thus are not binding on all rational agents. We do not have the space to evaluate this view here, but we think that adopting such a view is a grave error, for ultimately it leaves its proponents with no grounds whatsoever to rationally criticise divergent moral views, even those they themselves find most pernicious.

intelligent Martians to treat humans with profound intellectual disability as it is permissible to treat non-human animals. They would do nothing wrong by farming and eating them (or at least nothing worse than we do to non-human animals like cattle). And so, relational accounts must fail.

## **5. A further response to moral individualism is possible**

Let us briefly summarise the position we have arrived at. We have outlined the moral individualist's account of moral status, according to which the moral status of humans with profound intellectual disability must be grounded in the intrinsic psychological properties of those humans. However, such humans may not possess any intrinsic psychological properties sufficient to ground a high moral status. Accordingly, we have considered how we might respond to moral individualism. However, as we have outlined, it seems that the only alternative account available is a relational account of moral status, which fails for the reasons just given. So, we think that *both* moral individualism *and* relational accounts of moral status fail to account for the moral status of those with profound intellectual disability. Where do we go from here?

In fact, we think that we can learn from the failure of both accounts. Moral individualism fails because it fails to identify an intrinsic property possessed by humans with profound intellectual disability that explains why they have a moral status equal to non-disabled human beings. And relational accounts fail because they fail to identify relations that can do this job. But what if we combine the two accounts? What if we could find an *intrinsic* property possessed by *all* humans (with or without profound intellectual disability) that has a *relational* significance? In fact, we now think that we can do just that.

In order to explain this idea further, it is useful to reconsider the simple examples of grounding that we began with. We contrasted shape properties of objects like *being square* with familial properties of persons like *being a sibling*. The former, we said, gives an example of a property that is grounded by intrinsic properties, and the latter an example of a property that is grounded by relational properties. We then went on to say that moral individualists view moral status properties as being like *being square* and that those who defend relational accounts view moral status properties as being like *being a sibling*. However, there are properties that, in a sense, fall into a half-way house between *being square* and *being a sibling*. For these properties, it is unclear whether they should be thought of as being grounded by intrinsic properties or relations. One plausible example, in this regard, is the colour properties of objects, such as *being red*. Colour properties are certainly not simple unanalysable properties, and so must be grounded. However, there is a sense in which the possession of *being red* by an object is grounded by intrinsic properties of the object, *and* a sense in which its possession is grounded by relations. The sense in which it is grounded by intrinsic properties is the sense according to which something is red just if it has a certain intrinsic physical structure that means it reflects light only of a certain wavelength, that is, according to something like the following schema:

X is red = X possesses an intrinsic structure Y that reflects light of a certain wavelength.

And the sense in which it is grounded relationally is the sense in which something is red only if it looks red to normal observers under normal conditions, that is, according to something like the following schema (which mentions other things other than the individual itself, i.e. observers):

X is red = X would give rise to red experiences in normal observers under normal conditions.35

The salient point here can be put in the following way: if we want to explain what colour properties are, what we should do is explain their intrinsic structure, and explain how that intrinsic structure interacts with the environment to give rise to certain experiences in observers. In other words, *being red* is a matter of having a certain *intrinsic* structure that has a *relational* significance.

Our leading idea, then, is that moral status properties are just like colour properties in the above sense. What we need to do is to

35 NB The notion of a 'normal observer' and 'normal conditions' needs to be spelled out carefully. There is a large literature on how to do this, but we pass over this complication here. The intuitive notions are clear enough for our purposes.

identify certain intrinsic properties possessed by *all* humans (including those with PIMD), as moral individualists think we must. But, unlike moral individualists, we do not think that we must confine ourselves to thinking that those properties only have an *intrinsic significance*, meaning that we can explain why those properties give rise to the possession of a high moral status by considering *only* humans with profound intellectual disability. Instead, we think we must look to explain their significance *relationally*, that we must make reference to things *other* than those with profound intellectual disability to explain why they are morally relevant properties.

We need not stop there. We can draw further on the failure of moral individualism and relational accounts of moral status to learn more about what an explanation of moral status of people with profound intellectual disability must look like. We noted that any explanation of their moral status must account for its categoricality and objectivity; it must explain why any possible rational agent in any possible circumstance must treat those with profound intellectual disability with the respect we maintain they deserve. And the account we are now considering gives us a way to do this. What we must do is identify an intrinsic property possessed by those with profound intellectual disability that any rational moral agent, by virtue of being a rational moral agent, *must* respond to. It is the *relational* fact that any rational moral agent must so respond that will explain the significance of the *intrinsic* property itself. It is this that is missed by moral individualists, who think that the moral status of people with profound intellectual disability is to be explained by mention of their intrinsic properties *alone*. But there is also something here that is missed by those who defend relational accounts of moral status. If such an account is to work, there must be some *intrinsic* property possessed by all humans with profound intellectual disability for rational moral agents to respond to in the first place. If there is no such property, there is simply nothing that rational moral agents *must* respond to, and so no way to establish the necessity of the relation in question, which is precisely what is needed to establish the categoricality and objectivity of the moral status of people with profound intellectual disability.

So, to summarise the above: what we need to identify is some *intrinsic* property possessed by all humans with profound intellectual disability and lacked by non-human animals like cattle, and explain its moral significance *relationally* by explaining why any rational moral agent, by virtue of being a rational moral agent, must respond to it by treating people with profound intellectual disability with the same respect with which they treat non-disabled humans. To put things another way, what we learn from the above is that the most important questions to ask in moral theory are not *merely* questions about single individuals but those questions along with questions about pairs or groups of individuals and the relations between them.

To apply the above idea to the debate surrounding humans with profound intellectual disability, we should build our theories about what we owe such humans on an explanation of what moral value our relations with them have. In so doing, we should focus on the intrinsic properties possessed by those with profound intellectual disability, but not solely on *their* intrinsic properties. We should also consider how *our* intrinsic properties and how *we*, as rational moral agents, should respond to *their* intrinsic properties by virtue of being rational moral agents. That is to say, we should not forget to leave out the role *we* play in the story, as *responders* to the properties *they* possess.

#### **6. Possible personhood and the virtue of empathy**

We take our cue in this final section from a recent paper by the philosopher Shelly Kagan, who has tentatively argued that the intrinsic property of *possibly being a person* is a property with moral significance (Kagan, 2016). We think that this view has great promise, so long as it is worked out in line with the basic idea we have expressed above (Kagan himself frames it in moral individualist terms). Here we offer some tentative suggestions about how this might be done.

Firstly, what is the property of *possibly being a person*? To explain this, we must first explain what the property of *being a person* is, which is used in a semi-technical sense in the philosophical literature. It is used to pick out the property that is possessed by all statistically typical adult human beings by virtue of their possessing the high-level intrinsic psychological properties mentioned above in Section 3. In short, a person in the philosophical sense is an individual with reason and reflection, who is capable of entertaining propositional thoughts, planning for the future, and so on. And so *possibly being a person* is the property that is possessed by any individual who is *not* in fact a person (i.e. who does *not* in fact possess those high-level intrinsic psychological properties) but who *could have been* (i.e. who *could have possessed* those high-level intrinsic psychological properties). The idea, then, is that it is an intrinsic property of humans with profound intellectual disability that they *could have been persons* (in case they are not). This in turn is justified in terms of the metaphysical nature or essence of what it is to be a human being. Human beings, in their very nature, could have been persons, while non-human animals could not. Cows, for example, by virtue of being intrinsically cows, could not have possessed the high level of intrinsic psychological properties that statistically normal non-disabled humans possess. Thus, *no* cow could have been a person.

If the above is right, this identifies an intrinsic property, that of *possibly being a person*, that is possessed by all humans with profound intellectual disability, and lacked by non-human animals. How, then, are we to explain its relational moral significance? Our answer is to appeal to something like a virtue ethical account, according to which it is constitutive of being a good moral agent to respond to this property appropriately, by conferring greater care and concern upon those who could have been persons than those who could not. One initial line of thought is to appeal to something like the virtue ethical notion of *empathy*. We may suppose that empathy comes in different forms, and that it takes a special form with regard to humans with profound intellectual disability. Thus, we can say, one should empathise in this special way with those who could have been persons but are not. These humans have sustained something like an existential loss in that they do not possess all the attendant goods that go along with being a person. And, because of this, they are owed a great deal of empathy, in the special sense we have indicated. Any moral agent should respond to their existential loss appropriately, by

treating such individuals with utmost respect, as having a moral status equal to the rest of human beings. We suggest that properly spelled out this special notion of empathy entails acting towards such individuals with a special concern with their well-being. It involves making an attempt to understand what that wellbeing consists in, and in attempting to make their lives go as well as possible.36

Thus, the idea here is that any rational moral agent, *by virtue of being a moral agent*, should respond to this intrinsic property of people with profound intellectual disability by treating the individuals in question with the utmost respect, i.e. as having a moral status equal to that of non-disabled human beings. To be somewhat more specific, we suggest that acting empathetically in this special sense towards such individuals involves being concerned with their well-being to a higher degree than we are concerned with the well-being of non-human animals like cattle. Note, however, that this is an initial tentative account. We do not mean to hang our account here on precisely the notion of 'empathy'. Although this term seems appropriate in some respects, it seems inappropriate in other respects, and perhaps another term is better. In particular, 'empathy' may seem to suggest something like 'pity', which we do not intend. A good analogy here is perhaps with the elderly, who are no longer able to do the things youth allows because of the bodily changes that naturally occur

36 This line of thought has a resemblance to the Rawlsian idea that the undeserved inequalities resulting from natural and social lottery should be compensated for somehow (Rawls, 1971). So, persons with PIMD in this scheme have suffered from bad luck in the natural lottery by being born with less favorable biological potential than the rest of us. Often, they have been unlucky in the social lottery as well by living in a social environment that caters poorly to their various needs. To admit that PIMD as an inherent state of an individual is more or less undesirable does not necessarily imply ableism, derogatory pity or any other harmful prejudice where disabled people's subjectivity is taken away from them and where they are nothing but objects on whom non-disabled people project fears about their own vulnerability. Rather, the acknowledgement of the undesirable dimension related to PIMD is an opportunity for moral agents to pay extra attention to the well-being of those fellow human beings who possess only rudimentary capacities of their own to flourish.

as humans age, and have thereby sustained a loss. Those who are younger should empathise with them for this, and treat them in an appropriate manner because of this, but this does not amount to pity. At any rate, a proper treatment of the issue will need a thorough exploration of what the virtues consist in, and how responding to those individuals with profound intellectual disability because they could have been persons, is partly constitutive of being a virtuous agent. We are not yet sure how to spell this account out in detail. But it does have an intuitive appeal, and we are convinced that some account of this kind can be made to work.

## **Conclusion**

The above, then, is where we currently stand on these issues. Clearly, details need to be filled in, and further development is needed. But, if we are right, all the pieces of the puzzle will finally fall into place. We can allow that humans with profound intellectual disability possess an intrinsic property, that of *possibly being a person*, and maintain that it is the relational significance of this property that grounds their high moral status. Some of them could have been persons, but are not, and this is something any good moral agent should be appropriately responsive to, by displaying some virtue, perhaps one related to that of empathy. And so any good moral agent should be concerned to ensure that the well-being of humans with profound intellectual disability is fully understood, so that their lives can go well.

We finish, then, where we began, by restating the fundamental ethical principle that underpins the project that led to this book: human beings with profound intellectual disability are beings with moral status equal to, and deserving of the same respect as, any other human being. As we also stated at the beginning, this principle entails that their interests and well-being matter as much as anybody's, and that we therefore have a duty to understand them better, in order to discover what those interests truly are, and what their well-being truly consists in. As we hope to have demonstrated in this appendix, we now think that we have, at least in outline, an understanding of how this is to be justified philosophically.

# **Analysed Policy Documents**

panon arviointia ja tehostettavat toimet vuosille 2016–2020. Seurantaryhmän loppuraportti. [From intellectual disability hospitals to individualised housing. Evaluation of the housing programme for people with intellectual disabilities and the actions for years 2016–2020] Sosiaali- ja terveysministeriön raportteja ja muistioita 2016:17.

# **References**

and multiple disabilities: Relationship with age, communicative abilities and current living arrangements. *Journal of Applied Research in Intellectual Disabilities, 28*, 159–164. https://doi .org/10.1111/jar.12115

and dementia. *Disability and Rehabilitation, 24*, 175–184. https://doi.org/10.1080/09638280110074911

*Belonging for people with profound intellectual and multiple disabilities: Pushing the boundaries of inclusion* (pp. 98–112). London: Routledge.

*Intellectual Disabilities, 12*, 111–126. https://doi.org/10.1177 /1744629508090983

Current trends in the Nordic countries. *Journal of Policy and Practice in Intellectual Disabilities, 9*, 134–146. https://doi .org/10.1111/j.1741-1130.2012.00340.x

F. Felder, & B. Schmitz (Eds.), *Disability and the good human life* (pp. 139–167). New York, NY: Cambridge University Press.

# **Index**

#### **A**

ableism 161 accessibility 77, 121 accommodation *see* group homes; institutional care activities day centre *see* day activity centres and services group home 72, 102, 104, 171 youth associated with 118 adult services, compared with children's 63, 66, 123 age, (in)significance of 113 analytical perspectives 117 Hugo as a young man 114, 116, 122, 124 normalisation and ageappropriateness 114, 119, 128 service planning and delivery 178 youth, meaning of 118 youth lost in the service system;youthl 123 youth talk used to critique care system;youtht 121 alcohol 132 American Association on Intellectual and Developmental Disabilities (AAIDD) 13 American Psychiatric Association\DSM-5 13

animality, disability compared to intrinsic difference between humans and animals 195, 200 living conditions and institutional architecture 166 oppression and exploitation 157, 160 PIMD seen as a menace 172 purpose of comparison 155, 174 warehousing versus caring 170, 179, 183 Anna (participant) cognitive capacity 63 communication and interpretation 42, 63, 99, 138 discomfort at noisy activities 78, 98, 138 and physical affection;physical 139, 145 sense of humour 62 social community 95, 96 architecture, institutional 166 Aristotle's virtue ethics 130 Atkinson, Paul 32

#### **B**

Barton, Len 8 Binet, Alfred 12 Boni-Saenz, Alexander A. 144 Braidotti, Rosi 156

### **C**

capabilities approach 6, 54 care plans 67, 69 care work practices change enabled by 80 for convenience of staff 173 information systems 66 leadership 110 profound intellectual disability formed by 71 and social lives in group homes 100, 109, 120, 178 warehousing versus care 170, 179, 183 youth talk used to critique 121 care workers 'attitude' to social needs 102, 110 age-appropriateness, concern for 121 expections of people with PIMD 89, 106 interest in the project 34, 37 knowledge of people with PIMD 59, 179, 182 knowledge sharing and documenting 48, 66 researchers' relationship with 46 social interaction, role in supporting 100 understanding versus practice 53, 78, 84 *see also* care work practices change-enabling practices 80, 85 *see also* development potential children's services, adult services compared with 63, 66, 123

citizenship 5, 163, 175 cognitive capacities 62, 74 communication 40, 59, 89, 99 *see also* interaction(s); interpretation Communication and Technology Centre Tikoteekki 35 community care 19, 24, 87, 91 Condillac, Etienne Bonnot de 75 consent to research participation 36, 39 sexual 138, 142 Crary, Alice 159

#### **D**

daily records 66 Danish model of institutional care 18 day activity centres and services 73 group activity and individual needs 45, 98 history, in Finland 19, 22 information exchange with group homes 48 lack of programme and goals 124, 170 life-broadening experiences 80 multisensory activities 73 provision of 96, 123 decision-making capacity 143, 167 deinstitutionalisation 23, 34, 87, 91, 108, 122, 168 development potential 63, 99, 123, 127 developmental psychology 129 dignity of risk 154 disability studies 6, 135, 145, 152, 180 discourse analysis 54

#### **E**

economic value 162, 163 education 14, 15, 17, 79, 124, 129, 130 *see also* development potential; lifelong learning Ella (participant) accessibility of activities 77 communication and interpretion 41, 43, 49, 59, 140 eating and showering 173 enjoying a 'nothing happens' moment 52 faeces-smearing behaviour 139 interpreting as 'delighted' 49 mobility 1, 97 personal assistant (PA) for 83, 95, 110 personality 59, 182 and physical affection 145 proxy consent for 37 at a rock concert 110 rocking movement 51, 52, 110 self-harming behaviour 43 sexuality 139, 145 sociability 97, 99, 104, 105 embodied action 50 emotional involvement of care workers 109 of researchers 47 emotional needs 149 *see also* physical affection

empathy 210 Erikson, Erik 129 Esquirol, Jean Etienne Dominique 11 ethics of care workers 62, 65 research 30, 32, 38 sexual *see* sexuality *see also* moral individualism and responses to it; moral worth ethnographic practice of unforgetting 52 ethnography research practices 29 analysis of data 53 note writing 30, 49 pilot study 37, 49 recruiting participants 33 relationship development 40 research ethics 30, 32, 38 time considerations 47 eugenics 16, 17

#### **F**

facilitated communication 142 facilitated decision-making 143 faeces-smearing behaviour 139 family members and the participants 64, 70, 95 and the research 34, 36, 49 on social relationships 89, 90 *see also* parents of children with intellectual disability feeble-mindedness 21 Ferguson, Philip and Dianne 58

Finnish Association on Intellectual and Developmental Disabilities 35, 41 Finnish intellectual disability services care system practice 78, 178 deinstitutionalisation 7, 34, 87, 91, 108, 122, 168 historical overview 14 TOIMI tool 71 *see also* day activity centres and services; group homes Forster, Sheridan 119 Frida (participant) bubble-blowing activity 80, 82 changes seen after moving home 63 cognitive capacity 63 communication and interpretation 42, 50 gingerbread decorating 46 personality 61, 64 and physical affection 145 physical capacity 64, 137 picky about care workers 104 private space of 44 're-minding' knowledge 70 sociability 61, 64, 71, 98, 99, 105, 106 social community 95, 107 support person for 69 TOIMI-form not useful for 71 friendships 106

## **G**

Galton, Francis 12 Gill, Michael 150

good life 5, 31, 51, 53, 118, 122, 127, 130, 149, 157, 171, 177, 182, 183 Goodey, C. F. 10 Goodley, Dan 156 Grandin, Temple 158, 160 Greek philosophy 11, 130 group homes care practices 72, 101 deinstitutionalisation and 7, 23 as home 171 information exchange with day centres 48 institution-like aesthetics 167 kitchen in/out of bounds 98, 168 social participation 94, 95, 98, 101 as workplaces for staff 44, 168 Grue, Jan 175

## **H**

(re)habilitation 20, 72, 96, 123 Hedman, Edvin 15, 16 hobbies 72 homes *see* group homes housing services 91, 93 Hugo (participant) communication and interpretation 29, 59, 116 daily life 101, 102, 116 personality 59, 182 physical capacity 116, 137 sociability 79, 99, 117 social community 95, 96 as a young man 114, 116, 122, 124

human rights *see* rights Hume, David 182 humour, participants' sense of 62

#### **I**

idiocy 11, 15 IDSACH (Intellectual Disability Services' Advisory Committee for Housing) 91, 92, 93 imbecility 12 individual care plans 67, 69 individual needs 77, 92 information systems 66 institutional architecture 166 institutional care 7, 16, 18, 22, 163, 166, 177 intellectual disability definition 13 meaning of (historical overview) 10 *see also* PIMD intellectual disability services *see* Finnish intellectual disability services Intellectual Disability Services' Advisory Committee for Housing (IDSACH) 91, 92, 93 intelligence 12 *see also* cognitive capacities intensive interaction methods 41 interaction(s) 41, 53, 71, 99 *see also* communication; interpretation; one-to-one interaction; social participation and inclusion

interpretation 43, 49, 59, 65, 77, 138 intimacy 137, 145, 151 IQ 12 *see also* cognitive capacities Itard, Jean-Marc-Gaspard 75

#### **J**

Jennings, Bruce 69

#### **K**

Kagan, Shelly 209 KEHAS programme 87, 91 Kittay, Eva Feder 4, 40, 158, 182, 200 knowledge of people with PIMD 58 care workers' experience 59, 182 limits of 41, 65, 179 putting into practice 58, 79, 179 're-minding' of the person 69, 79, 80 sharing and documenting 66 Kulick, Don 32, 33, 40, 44, 46, 141

#### **L**

Laine, Kaisa 35 language *see* terminology Lawthom, Rebecca 156 legal capacity 143 Leo (participant) communication and interpretation 100 distress at unfamiliar care workers 103

Leo (participant) *(continued)* new skills acquired 65 and physical affection 145 self-harming behaviour 52, 100 sexuality 145 social community 95, 96 lifelong learning 125, 127 living arrangements *see* group homes; institutional care. Locke, John 11, 75, 183 Lundblad, Michael 175 Lyons, Gordon 5

#### **M**

Martikainen, Kaisa 35 masturbation 137, 145, 150, 151, 152 McMahan, Jeff 4, 146, 158, 187, 188, 190, 198, 200, 203 mental age 132 mental retardation 13, 57 mercy killing of animals 161, 165 Ministry of Social Affairs and Health 91, 93 mobility 1, 97 Moore, G.E. 191 moral individualism and responses to it 185 *introduction* 185 empirical data, need for 4 equality as a Moorean belief 189 equality principle 186 grounding of moral status 193 intrinsic properties as the grounds of moral status 193, 194, 195

intrinsic properties with relational significance 206 possible personhood and the virtue of empathy 209 relational accounts of moral status 199 moral worth 3, 17, 182 *see also* animality, disability compared to; moral individualism and responses to it multisensory activities 73 music 110, 170 mysteries, other people as 36

#### **N**

narrow lives, use of term 2, 48 Nazis 159, 164 normalisation 23, 114, 119, 128 'nothing happens' (inactive moments) 50, 52 Nussbaum, Martha 6

#### **O**

one-to-one interaction 78, 98, 106 others, speaking for 33, 40, 179

#### **P**

parents of children with intellectual disability 19, 23 *see also* family members participants (overview) 33, 41, 95 *see also* Anna; Ella; Frida; Hugo; Leo; Sebastian personal assistants 83, 96, 104, 110

personalities 59, 69, 70, 178, 182 personhood 209 Perttula Institution and Training School for the Feeble-Minded 16 philosophical devaluing of persons with PIMD 3, 157, 181, 183 *see also* moral individualism and responses to it physical affection 137, 145, 149, 151 physical capacities 64, 136 physical contact 42, 43 PIMD (profound intellectual and multiple disabilities) definition and conception 1, 35, 57, 172, 179 prevalence of 14 reconceptualising 83, 120 terminology xix, 14, 35 posthumanism 155 potential for development 63, 99, 123, 127 Priestley, Mark 129 privacy 44, 92, 94, 109, 141, 151 proxy consent 36, 39 psychological capacities 4, 11, 155, 183, 193, 196, 210 psychometric tests 12 psychosocial development 129

#### **R**

Rachels, James 190, 198 record-keeping 66

recruitment of participants 33 rehabilitation 20, 72, 96, 123 Reinisch, J. M. 145 're-minding' 69, 83 representing others 33, 40, 179 research participants (overview) 33, 41, 95 *see also* Anna; Ella; Frida; Hugo; Leo; Sebastian research practices *see* ethnography research practices rights age-appropriateness and 115, 120 disability policy guided by 20, 23 equality principle 186 housing and services 23, 92, 94, 167 legal capacity 143 sexual and emotional 21, 141, 149 Rousseau, Jean-Jacques 75 routine of life 48, 72 Runswick-Cole, Katherine 156 Rydström, Jens 44, 141

#### **S**

Saari, Erkki 17 Sanders, S. A. 145 scapegoating of people with impairments 157 schools 14, 15, 17, 79, 124, 129, 130 Sebastian (participant) activities 77, 83, 102

Sebastian (participant) *(continued)* communication and interpretation 42 evening spent 'hanging around' 107 excitement at ball throwing games 42 personality 60, 83 physical affection 145, 151 sexuality 145, 151 sociability 61, 97, 99 social community 95, 96 self-determination 60, 63, 67, 69, 72, 120, 167, 178 self-harming behaviour 43, 52, 100 Sen, Amartya 6 sensationalism 75 sexual abuse 146, 148 sexuality 135 control of 17 defining sex 145 denial and discomfort about 135, 173 disability studies research 135, 145, 152 gender differences in expression of 145, 148, 150 human rights and 21, 141, 149 ignoring versus facilitating 141, 149 interpreting communication and consent 138, 142 intimacy and physical affection 137, 145, 149, 151 masturbation 137, 145, 150, 151, 152 Shelton, David 152

Simon, Theodore 12 Singer, Peter 4, 146, 158, 159, 190 Snoezelen 76 sociability 61, 64, 97, 179 social interaction(s) 41, 53, 71, 99 *see also* communication; interpretation; one-to-one interaction; social participation and inclusion social isolation 178, 179 social participation and inclusion alcohol drinking 132 care work practices, effect of 100, 178 coding social interactions 53 Ella at a rock concert 110 in Finnish policy 89, 90 participants' sociability 97, 179 participants' social communities 95, 178 and people with PIMD 71, 88 researchers' interactions with participants 41 support for 93, 100 TOIMI tool definition of social interaction 71 speaking for others 33, 40, 179 special education 14, 79 staff *see* care workers stagnation 125 Stainton, Timothy 76 Steinbeck, John: *Of Mice and Men* 172 sterilisation 16, 18, 163

stimulants (coffee, alcohol, etc) 132 stories, listening to 73, 74 Stubblefield, Anna 142, 146 support persons 96 supported decision-making 143 surprise, participants' capacity to 82, 83 Sweden, group homes in 24

#### **T**

Taylor, Sunaura 161, 163 television watching 106, 121 terminology xix, 10, 21, 35 in Finland 14, 21, 35 historical overview 10, 14 use in this book xix time considerations 47 TOIMI-forms 71 Tøssebro, Jan 25 tragic, disability as 165, 181

#### **U**

uncertainty, in interpretation 43, 51, 59, 65, 138, 140

unforgetting, ethnographic practice of 52 United Nations Convention on the Rights of Persons with Disabilities (CRPD) 143

## **V**

victimisation 157, 160 virtue ethics 130, 209

#### **W**

walking 1, 65, 97 warehousing versus caring 170, 179, 183 well-being *see* good life William Bronston 115 witchcraft, impairments as signs of 157 Wolfensberger, Wolf 167, 173 World Health Organization (WHO) 13, 57

## **Y**

Young, Iris Marion 40 youth *see* age, (in)significance of

**What is day-to-day life like for people with profound intellectual and multiple disabilities who live in group homes? How do they express their desires and wishes? How do care workers think about them and treat them? Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and moral affirmation?**

**Narrowed Lives is an illuminating portrait of what life is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live their lives. It documents how care workers strive to guarantee individuality and dignity against a backdrop of scarce resources and misguided policies. The book is a sobering account of how the lives of people with profound intellectual and multiple disabilities are restricted, not primarily because of their impairments, but, rather because well-meaning intentions do not always work out that way in practice.**

NARROWED LIVES

NARROWED

LIVES

**Meaning, Moral Value,**

**Intellectual Disability**

**and Profound**

**Simo Vehmas**

**Reetta Mietola**

Vehmas & Mietola