| Disability Studies Quarterly Summer 2005, Volume 25, No. 3 <www.dsq-sds.org> Copyright 2005 by the Society for Disability Studies |
Technology, dementia, and ethics: Rethinking the issues Clive Baldwin
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Abstract Although there has been a marked increase in interest in using and developing technology in dementia care, discussion regarding the ethical issues of that development and application is severely limited. Discussion is limited both in scope — the issues that are deemed suitable for ethical reflection — and in the paradigm within which those limited issues are discussed, namely the dominance of the principlist approach to bioethics. This paper offers a series of reflections on technology, dementia and ethics in an attempt to widen the debate and generate new ways of thinking about the issues involved in the development and application of technology in the field of disability generally. Keywords: Dementia, ethics, philosophy of technology Introduction There has been a marked change over the last decade or so in our understandings and perceptions of dementia and persons with dementia (see for example, Kitwood, 1997; Sabat, 2001 and Martin & Bartlett, 2003). The history of our perceptions of dementia has, in many ways, followed the same trajectory as that of disability: from medicalization through the social model towards its reframing in terms of citizenship. This process is not complete but has brought in its train a host of studies and projects that have aimed to alleviate or remove the socially constructed barriers to participation historically faced by people with dementia. Dementia as disability is firmly on the agenda. Dementia as disability Although things are changing, the medical model is still the prevalent one in dementia. This model defines dementia primarily as a neurological condition and focuses on deficit and impairment. In this model persons with dementia are first and foremost ill, the prognosis poor and management consists of the observation of decline. This view has been exacerbated by the lack, until relatively recently, of any effective treatment and even now the possibility of treatment is uncertain. Kitwood (1997) challenged this model, arguing that dementia was not solely a medical condition but a composite of bio-social-psychological factors, uniquely constellated in an individual's life. In re-conceptualizing dementia in this way Kitwood was implicitly acknowledging the distinction made by the disability movement between impairment and disability, impairment being the result of neurological changes and disability "the disadvantage or restriction of activity caused by contemporary social organisation" (UPIAS 1976, p.3, cited in Oliver, 1999, p.11). For Kitwood (1997) people with dementia were not only disadvantaged by the environment but also by the attitudes and actions of those around them, disadvantages well understood in the field of disability (see, for example, Oliver, 1990; Barnes, 1996). Examples of such disabling social environments in relation to dementia would be the lack of adequate or appropriate signage contributing to the confusion of persons with dementia, or the lack of meaningful activity in some residential homes in which persons with dementia are essentially warehoused until death. Some authors have directly addressed this issue of dementia as disability (Gwilliam & Gilliard, 1996; Marshall, 1998; Pollock & Bonner, 2000; Downs, 2002; Adams & Bartlett, 2003). It is, however, apparent that while the social model of dementia has gained considerable ground, dementia as disability is under-theorized in the literature. There is, however, an increasing, albeit implicit, acceptance of dementia as disability among many involved in the field of dementia. Indeed, there has been an identifiable move from seeing persons with dementia as passive recipients of services and objects of research to developing ways of generating participation in such things as service evaluation (for example, Allan, 2001) and an increasing number of studies focusing on ways to engage persons with dementia in research (see, for example, Martin & Bartlett, 2003 for a summary of these). Furthermore, there has been a growth in interest in how the physical environment may adversely affect persons with dementia and a number of projects have explored how the environment might be adapted to enable rather than disable persons with dementia (see, for example, Marshall, 2003; Burton & Mitchell, 2003; Alzheimer's Australia, 2004). Technology, dementia and ethics Given the above re-conceptualization of dementia it is not surprising that there has been a marked increase in interest in using and developing technology to the (alleged) advantage of persons with dementia (see Cash, 2003). The failing capacities of individuals would seem to lend themselves to a technological solution, be that solution devices to enhance safety in the home (for example, Woolham & Frisby, 2002; Woolham et al, 2002), dementia-friendly Smart Houses (Bjorneby, 2000; Chapman & Orpwood, 2001; Rice, 2003), tagging (Wrigglesworth, 1996; Miskelly, 2004) and computer monitoring and surveillance equipment (for example, Kinney et al, 2004) and artificial intelligence and ubiquitous computing (Mihailidis & Fernie, 2002) to facilitate everyday activities such as handwashing (for example, Mihailidis et al, 2000; Mihailidis et al, 2001) and compensate for memory loss (LoPresti et al, 2004). Technology, however, is not without its cost, not only in financial terms, but also in terms of our relationships, our physical environment and our sense of self but also our ethical thinking and environment. There has, for many years, been an interest in the ethical issues raised in the design and application of technology in the field of dementia (for example, Marshall, 1995, 2003; Bjorneby & van Berlo, 1997; ASTRID, 2000; Bjorneby et al, 2004) In this paper, however, I am less interested in discussing specific applications of technology but rather some of the underlying philosophical and ethical issues regarding technology per se and its application in the field of dementia care. In so doing I hope to draw attention to ethical matters that do not yet seem to have found a place in the literature on technology, ethics, and dementia. Before doing so, however, it is important to note that this paper is not a review of the literature, nor do I claim that it is comprehensive in its coverage. My aims are far more humble. Furthermore, some of the issues raised may seem to conflict with each other. That is as it should be, for I am not attempting to produce a cohesive ethics of technology in dementia care but simply to draw attention and generate debate. It must also be remembered that there is, and always will be, conflict (or at least disagreement) when ethical issues are discussed. For example, even well-established theories such as Beauchamp and Childress' principles of bioethics may generate disagreement with the principles of autonomy, beneficence, non-maleficence, and justice not always sitting comfortably together (Beauchamp & Childress, 2001). Definitions and scope Definitions of technology vary. For some, the term is used synonymously with tool or machine; for others, the term refers to "the application of organized knowledge to practical tasks by ordered systems of people and machines" (Barbour, 1992, p.3) and is thus applied to a far wider field (see especially, Ellul, 1964). Because of this divergence of view it is, perhaps, better to talk of technologies in the plural rather than technology in the singular. Martin et al (1988) identify four major types of technology:
The boundaries between these four types of technology are, of course, permeable and individual technologies can cut across classification types. Three examples will suffice: the physical technology of information and communication systems, for example, also permits the production and transformation of signs, meanings, and symbols, which in turn help individuals to effect operations on their Selves and others; the Mini-Mental State Examination is at once a technology of a particular sign system and a technology of power embedded within a medical discourse; the Dementia Care Mapping tool (Bradford Dementia Group, 1997) is both a technology of a sign system and a technology of the self. The relationships between and dynamics of these types of technology are often both subtle and complex and any detailed analysis is outside the proposed remit of this paper. Here I will focus primarily on the ethical issues arising from the development and application of physical technology, drawing illustrations from three broad areas:
Where appropriate I will touch upon how these particular technologies transgress the boundaries of the ideal-typical types outlined by Martin et al (1988), indicating how physical technologies affect our relationships with others and our sense of self and being in the world. Philosophy and technology There has been considerable interest shown in the development of technology with regard to cognitive decline and/or dementia (ASTRID, 2000; Bjorneby et al, 1999; Morris & Lundell, 2003). Some of this interest has also concerned itself explicitly with the ethical issues that arise through the development and application of that technology. While this is as it should be, the current literature is limited in a number of ways by its failure to address the questions raised by the philosophy of technology, that is, the wider issues of what effect technology has on our ways of perceiving and being in the world. In particular, the literature on technology and dementia fails to address four key issues in the philosophy of technology:
I will deal with each of these, in turn, in relation to dementia care. 1. The relationship between technology and society The relationship between technology and society is complex and dynamic and while we may influence and channel technological development according to our values, aims and desires, technology also influences and contributes to the development and realization of those values, aims and desires. According to Skolimowski (1983) thinking technologically is to think in terms of accuracy, durability, and efficiency. Other writers, such as Jarvie (1983) and Mitcham (1994), comment on technology and the structure of knowledge. We live in a technology-saturated world and how we think about technology and the relationship between technology and society is partly determined, or at least heavily influenced by that technological environment (see Araya 1995 for a discussion of this with regard to ubiquitous computing). The danger here is that if we do not reflect upon the nature of that environment we are more likely to take it for granted as a modern certainty and therefore be unconsciously influenced by it. We must, therefore, reflect upon the nature and effects of technology in order to make informed decisions as to the path we want to follow and the values that we want to promote. For some, there are values more important than those inherent in technological thinking. For example, Berry (1997) reports that although a computer would enable him to write faster, (and presumably more accurately) his concern is to write better, a quality that the computer cannot help him in developing. Transferring this idea to dementia care, we may want to reflect upon whether accuracy, durability, and efficiency are of paramount importance when thinking about using and developing technology. It may, for example, be preferable to have less efficient technology that allows people to do things together even if a more technologically efficient design were possible. 2. Technology, technological thinking and the person In discussing the impact of technology and technological thinking on the person, Cooper (1995) raises a second strand of philosophical reflection concerning technology. Citing Roszak (1983), Cooper argues that because technology promotes some human capacities over others, what it is to be a person comes to be defined in terms of those capacities — for example, the narrowing of knowledge to the acquisition and processing of information. In part, this "technologizing" of the self can help explain the hypercognitive society that Post identifies as devaluing people with dementia (Post 1995). That is, because we view ourselves as knowledge acquiring and processing beings, those who perform this function less well are viewed at best as lesser persons, at worst, less than persons:
Furthermore, in promoting one particular view of what it is to be human, technology can push other views and other aspects of being human to the sidelines:
In this view of the relationship between technology and the Self, the richness of being human is replaced by a far narrower conception of what it means to be a person, a conception that pushes people with dementia to the sidelines. The concept of the self is a subject of great debate within the field of dementia (see, for example, Herskowits, 1995; Post, 1995; Hughes, 2001) yet there is little, if anything, in the literature addressing the impact of technology on the sense of self of people with dementia or their carers. Such discussions as there are (for example, Quebec Alzheimer Movement, 2000) may mention such things as the need to design technology that is not deficit-focused in order to preserve the self-esteem of the person with dementia, but there is, as yet, nothing on how the person with dementia is redefined or reconstructed in his or her relationship to technology. For example, to what extent is the Self reconstituted through living with ubiquitous computing where technology is attributed "the right to drive by itself the way in which certain aspects of everyday life are lived", a way of thinking that "exhibits a highly unreflective submission to the powers of technology" (Araya, 1995, p.236). 3. Technology and our form of life A further strand in the philosophy of technology that has implications for dementia care is the influence of technology and its contribution to our form of life or life as a whole. Cooper (1995) makes two points in relation to this. First, the rate of technological change impairs the capacity to see life as a whole, that is, seeing life as having a predictable shape and structure; and, second, that technology erodes intimate human relationships. With regard to dementia care, these potential dangers perhaps need even more attention. The onset and progression of dementia has a devastating impact upon one's capacities to engage in the world. Forgetfulness may fragment the shape and structure of one's world and the introduction of technology, however well-intended, may exacerbate the problem. On the other hand, technology may be designed to restore or enhance one's sense of predictability and structure. For example, it is possible to maintain a sense of one's life through reminiscence therapy and there have been attempts to develop technology that enables people's reminiscences (Gowans et al, 2004). There are two aspects to the danger of the erosion of intimate human relationships:
The first of these — the reduction of human contact through the safety and surveillance provided by the application of technological solutions - is perhaps the most discussed though probably the less dangerous. If, the reasoning goes, the person is safe and can be monitored via a range of technological devices, then there is less reason for her or him to be checked on in person. The lessened opportunities for human contact are seen as resulting in further isolation on the part of the person with dementia. This argument, however, may romanticize the quality of the contact between people with dementia and others. Social care services, under pressure of resource scarcity and budget restraints often allow a minimum of time for service provision and contact is task-oriented (the provision of meals, cleaning, bathing and so on). Furthermore, often such tasks are the responsibility of different people, and so people with dementia may be faced with a constant stream of people with whom they have no significantly meaningful relationship. In such cases, it may make more sent to focus technology on easing the task so that more time can be spent in simply being with the person with dementia. The second danger of the erosion of human intimacy - that the contact between the person with dementia and the carer will focus on and be mediated by technology - is one that, as far as I am aware, has never been addressed in the literature on technology and dementia. The question here is, does a technological solution move the relationship away from person cared for/person caring towards user of technology/technology support worker? Technology is deeply insinuated into people's perceptions, thoughts, and behaviors yet there is no discussion in the literature of the role of dementia care technology in creating, maintaining and influencing these. My concern here is that the I-Thou relationship (see, for example, Kitwood, 1997) is displaced by an I-It-Thou relationship. This displacement may take two forms. Firstly, that interactions between the carer-technician and the person with dementia focus on the technology — for example, in the exchange, "How are you getting on with the automated pill dispenser? Is it working properly? May I look to see if it is set correctly?" and so on. Second, the person with dementia may become known solely or primarily through the technology: for example, equipment that monitors patterns of behavior may produce a picture of opening and shutting doors that appears erratic and thus the person is typified as someone who erratically opens and shuts doors. The monitoring equipment cannot identify meaning and purpose behind such behaviors. In both these examples, the technology has mediated the direct relationship between the person with dementia and the carer. 4. Technology and the lived environment In addition to reflecting on how the development and application of technology might impact upon human relationships, we also need to consider how it might impact upon the environment we live in. It is not always possible to simply insert a specific technology into a situation without adapting, sometimes quite significantly, the environment in order that the technology becomes usable. A clear example of this process of adapting the environment to technology is seen in the history of the automobile where:
Just as the automobile penetrated public space, assistive technology may penetrate the private space of the home, changing not only the physical environment but also one's relationship to it. The environment we live in, particularly our personal space, is ridden with history, meaning, sentiment, and memory, all of which may be affected by the introduction of technology, however well-intentioned. In these circumstances we need to ask ourselves, "To what extent do we adapt the environment so as to facilitate the use of technology?" In answering that question, we must also remember that in applying assistive technology, it is usually somebody else's environment that we are adapting and we should therefore proceed with caution, especially in the case of persons with dementia who may not be able to apprehend the proposed changes in the abstract or the physical and psychosocial complexities of technological innovation. Values and technology Technology is not, as some would claim and as is widely assumed, value neutral and that value judgments only enter into the debate when discussing the application of technology. Far from it:
This is easily demonstrated: electronic tagging devices reflect the value placed on surveillance regardless of to whom they are applied, guns reflect the value placed on the capacity to kill regardless of the circumstances in which they are employed and Smart Houses reflect the value placed on autonomy and safety regardless of how they are used. There is no one best way to design a technology — different stakeholders may have different perceptions of what is needed, how it is to be realized and what the criteria for success might be. The design that finally emerges as the "best" will be the one that best reflects the values and interests of those involved in that design. For example, there was nothing logical or necessary about the final design of the bicycle, the development of which involved diverse technical specifications, aimed at diverse users with diverse criteria for success (Barbour, 1992). Technological design for dementia is no different — the question is, however, what are the values that we want to build into that technology? This, in essence, is an ethical question and our answer will determine our ethical stance. It is here that the principles of "Design for All" would seem to be highly relevant for technological development in dementia care. The seven principles of "Design for All" are intended to guide the design process so that products and environments are inclusive and accessible. These principles are:
A recent European Union funded research project — ENABLE — tested and evaluated a number of technological products for use with people with dementia (see www.enableproject.org). Items were selected or designed for the project on the basis of the above principles. The ENABLE project developed and evaluated the following products:
While the numbers or participants involved in the evaluation of the use and usefulness of the products was somewhat small, the ENABLE project has gone some way to raising an awareness of the potential of technology to enhance the quality of dementia care and clearly indicates that values can be consciously embedded into the design and application of technological devices. It is important to remember, however, that, as with any technology, even the seemingly benevolent and benign products of the ENABLE project have the potential for negatively impacting upon the lived environment and unintended consequences. Ethics, ethical frameworks and dementia Ethics, too, is about values, whether these values stem from a sense of what it means to be a person, our sense of duties, or rights or our relationships (to ourselves, each other and the world). The reasons we hold to such values - tradition, religion, philosophical reflection, family loyalty, or simply habit - are outside the purview of this article. It is important, however, to note that the values we stand by and our reasons for doing so are multiple and varied. In ethical theory as well as in everyday life there are competing views as to what are (and what should be) our values and what constitute good foundations for those values. Over the last five years, a number of authors have focused on the ethics of the use and development of technology in dementia care (ASTRID, 2000; Bjorneby et al, 1999). For these authors the main challenges confronting the use of technology in dementia care have been those posed by challenging behavior and much technology has been geared towards the surveillance and control of people who "wander" or other safety issues. While other applications of technology are acknowledged — such as assistance in the planning and co-ordination of care or providing memory aids or stimulus for people with dementia until recently these have been the subject of less attention. The ENABLE project, funded by the European Commission under the programme "Quality of Life and Management of Living Resources", recently explored and evaluated the use of technical devices to support memory, facilitate communication, and provide pleasure and activity. In so doing it has gone some way to addressing the under-explored potential of technology. Whatever the aim of the technology, however, most of the discussion in the literature on ethics, technology and dementia focuses on how technology may impinge, enhance or fit with the bioethical principles (see Downs, 1997; Bjorneby et al, 1999; ASTRID, 2000; Bjorneby et al, 2004) of autonomy, beneficence, non-maleficence and justice. In this, the literature is probably simply reflecting the dominance of the bio-ethical principlist approach in health care generally but might also be explained in part by the nature of the technology already being developed: the links between surveillance technology and civil liberties and technology designed to protect the person with dementia and beneficence being obvious. It must be remembered, however, that the principlist framework, while providing some guidance in the application of technology, is not the only ethical framework that can be drawn upon in discussing technology and dementia. Other frameworks, such as the ethics of care (see Noddings, 1984), might prompt us to ask different questions of technology. For example, while bioethical discussion tends to focus on the individual the ethics of care focuses more on relationships and communication. A principlist approach to a particular item of technology might then ask the question, "Does this technology enhance the autonomy of the individual?" An alternative approach — that of the ethics of care — might ask, "Does this technology bring people together in interdependence?" or, "Does this technology enhance the focal practice of caring?" (Michelfelder, 2004). One example of a technological innovation that can be seen as potentially enhancing inter-dependence is the development of help and support lines for carers of people with dementia. One such project was reported at a recent international conference, (ENABLE, Oslo, Norway June 2004). This project, under the auspices of Vestfold University College, Norway involves providing a system and the technology for carers to be able to support each other (and seek specialized nursing advice) via video-phone link and to access information regarding dementia via an intranet. This project is, at the time of writing, in its early stages but its potential for bringing people together in mutually supportive ways is clear. The ethical framework we use to evaluate and analyze technology will determine the sorts of questions that can be asked of that technology and the boundaries within which ethical reflection can legitimately take place. Much work is required to explore the differing landscapes carved out by bioethics, feminist ethics, narrative ethics, and virtue ethics, to name but a few of the potential frameworks for ethical analysis. Ethics and technology Ethics and technology relate to each other in complex and dynamic ways. It is not a case of simply applying ethical standards upon the design and application of technology (although this, of course, is vital) but also reflecting upon how the technological environment we live in influences and contributes to the nature of ethical reflection itself. Jonas (2004) argues that the development of technology has rendered the presumptions of traditional ethical theories obsolete and that human nature has changed with the development of technology. For writers such as Illich, ethics is impossible under a regime of scarcity where ethical action is determined by utility (1996). Others, such as Jacques Ellul, argue that rather than negating ethics:
Each of these views poses a challenge to those who argue that ethics applies only to the design and application of technology — for each of these raise questions as to the structure and scope of ethical action. In a technological society moral action is that which is permitted or determined by the requirements of technology. For example, what is technologically possible may become morally acceptable or desirable: be it stem cell research, cloning, genetic modification of crops or the development of ubiquitous computing. In order to properly assess the role that technology has to play in dementia care we need, somehow, to be able to step back and understand how technology has helped to frame the ethical questions as well as how it might be ethically applied as a solution. This ethical reflection in no mere distraction or a luxury that can await less pressing times. Without clarity and agreement on what the ethical questions to be addressed by technology are, we run the risk of having those questions posed for us by the autonomous development of technology (see Ellul, 1964). Ethics, in these circumstances, becomes reactive rather than proactive. Unintended consequences With any solution to any problem, and with any application of technology, there is the possibility of unintended consequences (Winner, 2004). Merton (1976) identified potential sources of unintended consequences including ignorance, error and the "imperious immediacy of interest," that is, people want the intended consequences so much that they choose to ignore any unintended effect. Two examples will suffice to illustrate this: the first, the case of automatic doors; the second, central heating. It is my contention that nobody really challenges the usefulness and desirability of either of these inventions. Each of these, however, have had unintended consequences. Automatic doors, for instance, while providing access to all, have also removed the opportunity to hold open doors for people and thus lessened the opportunity for making convivial contact (however brief) with other human beings. The human interaction of "please," "thank you," "may I help you?," "after you," the smiles, the eye contact and the feelings of having helped and been helped basically all disappear in the presence of automatic doors. I have no doubt that the intentions behind the development of automatic doors were benevolent and I do not dispute the benefit of the technology - but benevolence and benefit come at a cost and we should be aware of that. While automatic doors displace human contact, central heating replaces both meaning and meaningful activity. The stove, which central heating replaces, was more than just a means of heating a room, it was
One would be hard pressed to argue that, whatever its advantages, central heating embodies or represents anything like the stove. The question that arises in this context is whether the proposed technology enhances or maintains such focal things and practices or whether it denudes or destroys them. Technological development can, of course, reduce the burden of caring. Help-lines and video-phones can provide personal (if not geographically proximate) contact and support; automatic shut-off devices may provide safety and electronic tags may alleviate carer anxiety where people with dementia may go for a walk and get lost. What these devices cannot do, however, is provide a sense of place or meaning in the care-giving relationship. The danger inherent with the development of technology is that sense of place and meaning is displaced by a technological solution to a technologically determined problem. To be truly person-centered technology in dementia care needs to give priority to the roles, relationships and meanings experienced by people with dementia and their carers in their own, unique situations. Similarly, it is not beyond the bounds of imagination that some of the products of the ENABLE project discussed above might negatively impact upon the lived environment of people with dementia — for example, bath water temperature being set according to health and safety guidance rather than personal preference — and have unintended consequences such as the scheduled use of a picture gramaphone supplanting spontaneous singing. While it is impossible to foresee everything that might happen as a result of developing technology (however well-designed and however well it embeds the values that we have deliberately designed into it), it is important to think about such potential consequences and, if possible, address these at the design stage. One way of doing this may be to include the widest range of people in the design of such technology. Bringing together different perspectives, especially those of the end-users of technology, may go some way to forestalling some of the unintended consequences of developing technology for use in dementia care. In this way, different priorities and foci may be built into the technology and thus prevent the loss of contact, meaning and meaningful activity. Concluding remarks In conclusion I want to make a number of suggestions regarding how we might approach the question of technological development in dementia care. This is by no means a comprehensive program, merely some indications of the things that we should perhaps think about along the way. The first, and perhaps most obvious, question is whether the situation calls for a technological solution. The problem of "wandering" for example does not necessarily call for greater technological surveillance but could be addressed through the availability of walking companions. In my own research into the ethical issues for family carers of people with dementia, one carer was very clear that wandering was not a problem because he simply went with his wife wherever she wanted to go. This forestalled any conflict between the couple because the wife did not feel constrained by her husband and it also maintained the continuity of their relationship in which they had always done things together. Of course, this may not be a practical solution in every case but the point is well made — that human rather than technological solutions may be more beneficial or appropriate. In thinking about the application of technology, therefore, it may be worth thinking first about whether the problem can be addressed in non-technological ways. The second general point I want to make is that perhaps the ethical issues involved in the use and development of technology in dementia care are only different in degree rather than nature from the ethical issues that are raised for us all by advancing technology. Technology designed for safety, control, and surveillance surrounds us all — from seat-belts and airbags to car tracking devices and the worst excesses of the intelligence services. We also make use of a far greater range of technology than previous generations and adapt ourselves to it more or less willingly — for example, the now near necessity to be computer literate if one is to find employment. One concern with regard to technology and dementia is that the person with dementia will not be in control of, nor understand the workings of the technology being used. This concern is, of course, real, but in this people with dementia are not really any different from the rest of us. Much of the technology that surrounds us is not of our making, is beyond our understanding and is in the control of others - from CCTVs in the parking lot to the financial monitoring systems of credit houses, from air traffic control to identity cards. Who we are, how we relate and what values we wish to embed in our technology are questions for us all, not just for those working in dementia care. As such those involved in dementia care should seriously engage with the philosophy of technology. A third point is that the use and development of technology is morally ambiguous. Even when ethical values are consciously embedded within the design of a technological device, there is always a cost involved, something is lost or displaced. Of course, the benefits gained by deploying the technology may far outweigh the losses — but these losses, be they social and/or psychological should form part of the equation in evaluating technology. 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Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)
