Disability and Healthcare: Some Philosophical Questions

Chapter 7
Disability and Healthcare: Some Philosophical Questions


Robin Downie


Introduction


I have been privileged to be a member of several national committees chaired by Sheila McLean. She was unfailingly able to identify the key issues in any topic and to involve all members in discussion and in writing papers to assist in the final committee report. This was always done with good humour. Committee meetings were never my forte but I always looked forward to the ones chaired by Sheila because I knew that time would not be wasted and that she would steer us all to reach helpful conclusions. I also benefited from sharing some teaching with her in the Glasgow University MPhil in Law and Ethics in Medicine. Again, this was a course enormously enjoyed by the doctors and other healthcare professionals who took part.


Sheila’s interests are wide and one of them concerns the rights of the disabled.1 This is the topic that I shall discuss, as a philosopher rather than a lawyer. Sheila always claims that she is no philosopher, but she has a sharp mind for conceptual issues, and the topic of disability and its relationship to healthcare certainly raises conceptual issues.


Definitions


Any discussion of the relationship between disability and healthcare must begin by attempting to make it clear what is meant by ‘disability’. But we must first face the objection that there is no such condition. For example, it might be said that people can be ‘differently abled’. That might mean that if you are blind you will develop other senses, such as hearing, to a higher degree than the sighted population. This is common among blind musicians. Some associations for the deaf have taken a different line and argued that the difference between those who can hear and those who are deaf is a cultural one, that there is a ‘deaf culture’.2 They point to their sign language and the shared experiences which go with a shared language and take this as evidence that they are simply culturally different rather than disabled.3 Other groups again use terms such as ‘challenged’ – visually challenged, intellectually challenged and so on, or they might speak of ‘learning difficulties’. Others again might argue that if the groups in question encounter problems in their daily lives the problems are created by society and social arrangements which do not facilitate their lives, for example by providing adequate ramps and other appropriate provisions. This kind of argument can be developed and made more plausible if a distinction is drawn between ‘impairment’ and ‘disability’, as Sheila McLean and Laura Williamson do in their book.4 It can be argued that people might be physically impaired but are disabled only if society fails to offer facilities and services which will counteract the disability. In terms of this approach ‘impairment’ is an individual concern but ‘disability’ is a social concern.


It is easy to understand and sympathise with what lies behind all such attempts. They show a laudable desire to get away from the harsh terminology of the past, and to stress that the groups in question are human beings with human dignity. Nevertheless, disability is real and re-description will not change its reality. This bedrock must be agreed if government agencies are to be persuaded to create arrangements and the public to pay taxes to enable disabled groups to have worthwhile lives.


But to claim that disability is real is not to say what it is, and there are formidable problems in deciding what it is. It might be said that an easy way round the problem is to say that disability is any condition which entitles someone to a government disability allowance. But this is not a convincing approach. Allowances or benefits are variable depending on a given government’s welfare policy and the state of the economy in the country. The fact that Disability Discrimination Acts in the UK have developed in 1995 and 2005 and been superseded by the Equality Act 2010 seems to suggest that there is not one timeless correct Platonic Form of a definition, but rather that definitions have changed as a result of changes in public attitudes and political policies. To bring this out I shall examine the most recent definition offered in the Equality Act 2010.


A person is disabled according to this Act if he or she has ‘a physical or mental impairment’ that has a ‘substantial’ and ‘long-term’ negative effect on the person’s ability to ‘carry out normal day-to-day activities’.5 The Act defines ‘substantial’ as ‘more than minor or trivial’6 and guidance produced by the UK Government’s Office for Disability Issues gives the example of taking much longer than it usually does to complete daily tasks like getting dressed.7 By ‘long-term’ it means 12 months or more,8 and the Guidance gives the example of a breathing condition that develops as a result of a lung infection.9 ‘Progressive conditions’, or those which get worse over time, count as disablement, and there are special rules about recurring or fluctuating conditions such as arthritis. Some conditions are not covered by the definition. We are told by the Guidance that these include addiction to non-prescribed drugs or alcohol (see further below). This definition and the covering explanations raise some interesting questions. The definition uses the word ‘normal’, a weasel word if ever there was one. It glosses ‘normal’ in terms of ‘completing daily tasks like getting dressed’, but for many people their daily tasks include much more than that. We might therefore ask: Normal for whom and according to whose standards? We are told that a ‘progressive condition’ or ‘one that gets worse over time’ can be classed as a disability. Old age seems to fit this kind of progression, and of course ‘age discrimination’ is often condemned alongside disability discrimination. Again, colour blindness might be thought by some to be a disability; it would make impossible some kinds of ‘normal’ life. But it is excluded as a disability by the Act, according to the Guidance.


Surprisingly, HIV infection, cancer and multiple sclerosis are ‘automatically’ covered by the Act.10 It is easy to see why multiple sclerosis is included, but someone with HIV infection or some cancers may well be able to carry out normal daily activities, but they are ‘automatically’ included. On the other hand, the Guidance makes clear that addiction to non-prescribed drugs or alcoholism is excluded. But some addicts and alcoholics are likely to have extreme cravings which have a substantial and long-term effect on a ‘normal’ life. The Act stresses that disability concerns ‘effects’, such as difficulty in performing daily tasks, rather than underlying causes. But alcoholism and drug addiction may have serious effects on a ‘normal’ life, and cancer is not an ‘effect’ but an underlying condition. The main difficulty with the 2010 Act is that it tries to give a definition, or a set of necessary and sufficient conditions for disability, but is then obliged for political, financial or other reasons to include certain conditions which do not seem to fit the definition and to exclude others which do seem to fit.


But we need not yet give up the attempt to find a definition. Wittgenstein has argued that it is not possible to find necessary and sufficient conditions for many words. His example is of the idea of a ‘game’; there is no set of conditions which can cover, for example, both football and the card game ‘patience’. Nevertheless, we can recognise both as games because they have the sort of resemblance to each other that members of the same family might have. Similarly it might be said that there are ‘family resemblances’ among the members of the different groups who see themselves as in different ways disabled.11 This approach is certainly less prescriptive than a definition which stipulates that to be disabled a person must possess a given set of features. But when we begin to consider what the family resemblances are we hit difficulties. Compare the problems of someone who has Down’s Syndrome with those of a person in a wheelchair, or who is blind, or who has HIV infection. Are there any features they have in common, or even family resemblances among their characteristics? With a small amount of assistance from the social services, or indeed friends, families or partners, they could lead ‘normal’ or indeed distinguished lives, whether as cabinet ministers, pianists or poets. It is this that encourages many to say that disability is a misleading category.


It might be helpful to compare the concept of disability with that of disease, because the problems of defining disease have similarities to those of defining disability. Since the time of Aristotle there have been attempts to classify diseases in terms of the features they may have in common. This biological approach is the dominant one at the moment and its popularity has been increased by the spectacular rise of genetics. Thus the search in medical science is to isolate the gene or the faulty gene ‘for’ a given disease. Diseases thereby become objective occurrences independent of the experiences of those who have the disease. As distinct from this there is a view that diseases are cultural phenomena – what counts as a disease in one culture – obesity, say – may be seen as a sign of success in another. Again, some kinds of sexual behaviour may be seen in some cultures as conditions appropriately treated by psychiatrists, and in others simply as morally bad behaviour. The misleading assumption in this controversy is that there is one correct definition of disease. But perhaps different definitions are useful for different purposes. A definition which is useful for, say, evolutionary biology, may not be of interest to a clinician. The Equality Act 2010 is less about defining disability for its own sake, and more about discouraging discrimination.


Taking this pragmatic approach we might suggest that if someone has a physical or mental condition such that the person would benefit from some assistance then the assistance should be provided. But what sort of assistance? There are two answers often given to this question. One is to the effect that what is needed is medical assistance, that disability is a clinical problem affecting some individuals. This is often called the ‘medical model’ of disability. The other answer is that disability may not be a problem at all, or if it is, it is a social problem requiring social rather than medical solutions. This is known as the ‘social model’ of disability.12 There would certainly be legal and financial implications – involving rights and responsibilities – depending on which model is adopted, but I shall not investigate these. Rather I shall suggest some considerations which do or might influence supporters of the social model when they minimise the importance of medical interventions in the management of disability.


Medical and Social Models of Disability


One argument might be that nature should be left to take its course, that to try to alter by medical means what we are born with is to act like God. People should simply play the hand they are dealt by nature, and society should make that optimally possible. In other words, it is up to society to create the conditions that will enable someone to have a fulfilling life no matter what their physical or mental condition. In its extreme form this argument is highly unpersuasive – it would rule out medical treatments for diseases of any kind. But a slightly different and modified version of the argument criticises the desire which parents might have for a perfect child. I shall deal with this argument later in the section on genetics, but note here that using medical means to minimise disability must be distinguished from genetic manipulation aimed at perfection.


A second argument might be that medicine is increasingly inclined to colonise all areas of human life. Some conditions are such that either they should not be treated at all, or if they are to be treated it should be by other professions.13 Now there is some force in the claim that healthcare has adopted too wide a remit and it is relevant to consider how this has come about. The central point is that medicine has adopted the very broad role of promoting the ‘best interests’ of patients.14 This aim is at such a high level of generality that it is impossible to disagree with it, and it does not distinguish the practices of medicine from many other activities, such as education, or the making of social policy. Can the aim be made more precise?


An obvious first move in the direction of precision is to expand ‘interests’ or ‘benefit’ to ‘health’ interests and benefit. But this move requires some clarification of the concept of health. Traditionally doctors understood health, or their role in preserving it, in a negative way – they attempted to remove impediments to health. Today that is still the major aim that guides decision making in medicine, and I shall suggest that it should remain so. But aims and decision making in medicine have been made more complex since the World Health Organization (WHO) in 1946 put forward the notorious definition of health as: ‘[a] state of complete physical, social and mental well-being, and not merely the absence of disease or infirmity’.15 How far can this idealistic account of health be grafted on to the traditional aim of medicine, and what is its relevance to disability? Put another way, this is the question of whether medicine should be confined to the removal of impediments to health or whether, more ambitiously, its role should be extended to promote health as defined by the WHO – what is called ‘positive health’ or well-being.


Two arguments can be used to suggest that medicine should be confined to the removal of impediments to health. The first is that there is more than a hint of paternalism about the suggestion that we need medicine to guide us to a state of physical and mental well-being, or that doctors are experts in happiness. Happiness or well-being is such an individual thing that there cannot be experts on it. Health – often thought to be the area of medical expertise – is not always a necessary condition of well-being. Someone may be in a terminal condition in a hospice but be surrounded by friends and at peace with the world. The second argument for limiting the remit of medicine is that, to be economically realistic, the aims of medicine should be confined to treating disease and infirmity to the extent that that can be done by medicine. Other professions can concern themselves with offering advice and training to promote physical fitness and overall well-being. It should be noted of course that the view that doctors should be concerned only with ‘best interests’ in the sense of removing impediments to health is quite compatible with the view that they should be positive in their approach to patients. Honest but sensitive communication is required with a frank and courteous manner, coupled with the realisation that medicine cannot solve every problem.16


What implications does a narrow view of the aims of medicine have on disability? Certainly the narrow view of medicine can still include the treatment of such disorders as HIV infections, cancers, multiple sclerosis and clinical depression. All these problems are recognised by the 2010 Act as ‘disabilities’. Medicine can also be involved in the amelioration of other disabling conditions with devices such as hip or knee replacements. These conditions are what we might term ‘internal’ to the person and medicine here has a primary role. But supporters of the social model of disability are correct in arguing that there are limits to what medicine can do, or should try to do, in the treatment of disability; many forms of disability give rise to social or ‘external’ problems and require ‘external’ or social solutions.


The conclusion of this section then is that setting up the medical and the social models of disability as if they were exclusive alternatives is misleading. It is easy to select conditions which would support either point of view. Some conditions may require or benefit from constant medical attention, medication for clinical depression or the like, while others, say a person in a wheelchair, require ramps and good equipment for getting around. This suggests that a joined-up approach will work best. Indeed, there are large and developing industries of bioengineering or biotechnology which sit midway between what is medical and what is infrastructure improvement, such as electronic devices which assist communication. McLean and Williamson neatly sum up the false either/or when they say ‘… the medical model tends to overlook the role of bias and discrimination and the social model exhibits a tendency to deny that disability has any roots in physical and mental impairment’.17


Equality, Equity and Utility


Disability groups assert their rights to equal access to healthcare, public buildings, educational institutions, eligibility for employment and availability of support and carer services. These rights are widely accepted in principle by the Disability Discrimination Acts of 1995 and 2005. The Equality Act 2010 was a further attempt to meet some of the criticisms of disability groups.18 But underlying the full implementation of at least some of the rights there is a tension that is present in all public policies: between the respective claims of social utility and individual rights. This tension is particularly acute when agencies deal with the rights of disability groups since they can reasonably claim that they start off with a double disadvantage. I shall explore this tension as a way of highlighting the issues in disabled groups’ claims for more equality of treatment.


An important principle which ought to guide, if not wholly determine, government policy in any field is utility, or the maximising of benefit for the majority of a population. This general principle turns into specific economic tools such as cost/benefit analysis or quality-adjusted life years and is presented to the public as ‘value for money’. But it is obvious that this ought not to be the only guiding principle. For example, suppose a doctor or a social worker is faced with a disabled client who might benefit from an expensive drug, and/or requires hours of social work time. In terms of maximising benefit to the community at large it might be better to ignore the needs of such people and spend the resources on those whose need is less severe but who might benefit more. But this policy seems wrong in that it ignores the rights of individuals to equal consideration. No one ought to be regarded simply as expendable for the sake of the good of others.


This notion of ‘equal consideration’, however, needs more examination. In some contexts the demand for equal consideration is simply a demand for consistency of treatment between one person and another. In other words, it is a demand that people be treated in accordance with a rule which can be formulated. But the demand for consistency seems to clash with the more personalised side to casework. Professionals involved in casework stress the inapplicability of general rules because of the uniqueness of individual situations. On the other hand, where benefits are being distributed clients and patients in disabled groups are keen to demand consistency, using terms such as ‘post code lottery’, where that means that allocation of assistance seems based on arbitrary geographical distinctions. Consistency seems to be a necessary condition for the distribution of medical or social benefits to disabled groups if such distribution is to be seen as fair. But consistency is certainly not sufficient for fairness. After all, a principle such as ‘Never spend time with anyone who is disabled’ could be applied consistently. To get nearer the moral principle of equal consideration we need some way of ruling out such possibilities.


It is tempting to try to do this by saying that what is required is not consistency but an actual equality of treatment. But this is not satisfactory either. As pointed out above, caseworkers and clinicians stress that some people need much more help than others within patient and disability groups, and no one thinks it reasonable to spend the same amount of time and money whatever the problem. What is required is that all differences of treatment be based on a criterion which will group like cases together, and distinguish unlike cases, for morally appropriate reasons. This principle of justified differences in treatment is usually called a principle of equity. Equity is not the same as equality, since it requires not only that like cases should be treated equally but also that unlike cases should be treated unequally.19