The conference also aimed to strengthen partnerships with client countries and other international organizations to build and disseminate good practices in order to help countries achieve the goals of access, inclusion, and poverty reduction of people with disabilities.
Judith Heumann, Disability and Development Advisor at the World Bank, explained that the Global Partnership on Disability and Development (GPDD), which grew out of the 2002 disability and development conference, is a good example of an informal coalition, including the Bank and more than one hundred other organizations, that is trying to enable partnerships by focusing on economic development issues and the strengthening of human rights for disabled people. Today, a GPDD discussion group of about 25 people are considering a draft declaration of purpose, possible creation of a steering group, and next steps.
“While disabled people remain the poorest of the poor, we need to better understand and identify the economic impact of disability in poverty reduction, as we work to integrate disability into the development agenda of the Bank and other organizations,” says Heumann. “We need to recognize that if disabled people are afforded opportunities like other non-disabled people, then they can also make meaningful contributions. That’s why we are helping our global colleagues learn what the disabled community is, and how to include it into their daily work.”
For more information on the conference’s agenda and on specific regional data, please visit: www.worldbank.org/disability
DISABILITY AND JUSTICE
I feel very privileged to be here in this conference on disability and inclusion - a subject of immense importance. I am also very grateful for the kind remarks of Jim Wolfensohn. There are very few people in the world I admire as much as Jim, and it is wonderful for me to interact with him in this meeting. I also join you all in offering my warmest good wishes to the "birthday boy"!
People with physical or mental disability are not only among the most deprived human beings in the world, they are also, frequently enough, the most neglected. Even though this is a conference on practical matters, concerned with the great urgency - and also with the ways and means - of righting the wrongs that are done to the disabled people, my primary focus will be on theory, in particular the treatment of disability in theories of justice. It is important to see why the treatment of disability and the understanding of the demands of justice to the disabled should be so central to ethics in general and theories of justice in particular. It is also, I would argue, useful to understand why the main schools of thought in theories of justice have tended to neglect this central issue, and how that neglect, in its turn, has tended to bias practical policies in the direction of inaction, and has even contributed to suppressing the sense of inadequacy that can reasonably accompany the failure to take a responsible view of the social obligation to the disabled. Part of this talk will, thus, take the form of a "whodunnit" - albeit a rather philosophical whodunnit.
There can be, at one level, nothing as obvious as the predicament of the disabled and the manifest need to do something about it. When, twenty-five hundred years ago, young Gautama - later known as Buddha - left his princely home, in the foothills of the Himalayas, in search of enlightenment, he was moved, in particular, by the sight of mortality (a dead body being taken to the cremation), morbidity (he saw a person severely afflicted by illness), and disability (he watched a person disabled by old age). Gautama Buddha's concern about the deprivations and adversities of human life has served as a powerful image of caring humanity throughout the ages, and it remains deeply evocative today.
There is something immediate and poignant in the recognition of disability that calls for reflection and response. The deliberation that this leads to can be, with reason, expected to reinforce the immediacy and force of the call to action. Fairness to people in divergent circumstances is central to the subject matter of justice, and any adequate theory of justice must tell us how such fairness is to be achieved. Indeed, it is not hard to argue that any theory of justice must address this issue, in order to qualify as an acceptable doctrine, and must identify what is owed by society to the people who happen to be significantly handicapped. There can, of course, be debates on precisely how the predicament of the disabled is to be overcome or ameliorated, and what institutions, rules and conventions would be right in dealing with this grave challenge. But overlooking or ignoring the plight of the disabled is not an option that an acceptable theory of justice can have.
And yet, to a great extent, this is precisely what the theories of justice that have commanded loyalty over the centuries have tended to do, and this has profoundly affected the practical understanding of the nature of a good society and the demands of public order and social fairness. We must examine how this has happened, and why the impoverished perspectives that avoid addressing the claims of the disabled have come to occupy such central positions in political philosophy and welfare economics.
Any theory of social ethics, and particularly any theory of justice, has to choose what we may call an "informational basis," that is, it has to decide what features of the world we have to concentrate on in judging the success and failure of a society, and in assessing justice and injustice.1 In this context, it is particularly important to have a view on how an individual's advantage is to be assessed. Consider, for example, three prominent theories of social evaluation and justice.
First, utilitarianism - championed by Jeremy Bentham and others - concentrates on individual happiness or pleasure (or some other interpretation of individual "utility") as the best way of assessing whether a person is advantaged or disadvantaged.
A second approach, which can be found in many practical exercises in economics (and has had its run in theories of welfare economics), assesses a person's advantage in terms of his or her income and wealth. This is an opulence-based approach, just as utilitarianism is a utility-based approach, and its informational focus is on such data as aggregate incomes, on one hand, and income distribution, on the other.
A third theory is that presented by the greatest political philosopher of our time, John Rawls. This demands that attention be paid to liberty and its priority, but going beyond that Rawlsian theory of justice insists that in assessing distributional equity, the advantage of each person be judged in terms of the "primary goods" that each person respectively has. Primary goods constitute a general category of resources - or general-purpose means - that would help anyone to promote his or her ends. Rawls exemplifies primary goods by pointing to the need to include "rights, liberties and opportunities, income and wealth, and the social bases of self-respect."2
It can be easily shown that none of these dominant theories of ethics and justice can really pay serious attention to the issue of fairness to the disabled. I start with examining the second approach, the opulence-based theory, which is the approach economists often use in focusing on income distribution, and which tends to dominate public discussion of distributional concerns in the media and in public discussion in general. The basic problem with this approach was noted with much clarity 2300 years ago by Aristotle, in his book Nicomachean Ethics. Aristotle put the point thus: "wealth is evidently not the good we are seeking; for it is merely useful and for the sake of something else."3
Wealth or income is not something we value for its own sake. A person with severe disability need not really be judged to be more advantaged than an able-bodied person even if he or she has a higher level of income or wealth than the thoroughly fit person. We have to examine the overall capability that any person has to lead the kind of life she has reason to want to lead, and this requires that attention be paid to her personal characteristics (including her disabilities, if any) as well as to her income and other resources, since both can influence her actual capabilities. To ground a theory of justice on the informational foundation of opulence and income distribution would be a confusion of ends and means: income and opulence are things that we seek "for the sake of something else" (as Aristotle put it).
It is extremely important to distinguish between two types of handicap that tend to go with disability, which may be respectively called "earning handicap" and "conversion handicap." A disabled person may find it harder to get a job or to retain it, and may receive lower compensation for work. This earning handicap will be reflected in the opulence-based theory, since a disabled person may well be seriously disadvantaged in terms of income and wealth. But that is only a part of the problem. To do the same things as an able-bodied person, a person with physical disability may need more income than the able-bodied person. To move easily or at all, a person who happens to be, say, crippled by an accident or by illness may need assistance, or a prosthesis, or both. The conversion handicap refers to the disadvantage that a disabled person has in converting money into good living. It is not sufficient to be concerned only with earning handicap, since disabled persons tend to suffer also from conversion handicaps.
The issue is quite central to understanding the limitations of an income-based view of poverty. Poverty can be seen as an inadequacy of the basic capabilities that a person has. This links with lowness of incomes, certainly, but not just with that. With the same level of income a disabled person may be able to do far fewer things, and may be seriously deprived in terms of the capabilities that he or she has reason to value. For the same reason for which disability makes it harder to earn an income, disability also makes it harder to convert income into the freedom to live well.
Let me illustrate the influence of conversion handicap with some results from poverty rates in the United Kingdom obtained by Wiebke Kuklys, in an illuminating thesis recently completed at Cambridge University.4 Taking a poverty cut-off line at 60% of the national median income, Kuklys finds that 17.9 percent of individuals lived in families with below-poverty line income. If attention is now shifted to individuals in families with a disabled member, the percentage of such individuals living on below-poverty line income is 23.1. This gap of about 5 percentage point would largely reflect the income handicap associated with disability and the care of the disabled. If now conversion handicap is introduced, and note is taken of the need for more income to ameliorate the disadvantages of disability, the proportion of individuals in families with disabled members jumps up to 47.4 percent - a gap of nearly 20 percentage point over the share of below-poverty-line individuals (17.9%) for the population as a whole. To look at the comparative picture in another way, of the 20 extra percentage point poverty disadvantage of individuals living in families with a disabled member, about a quarter can be attributed to income handicap and three-quarters to conversion handicap.
Since the incidence of disability is relatively smaller in the United Kingdom than in many developing countries, the overall impact of taking note of the conversion handicap of disabled people for the British population as a whole is relatively moderate: it raises the average incidence of poverty for the British people as a whole, Wiebke Kuklys shows, from 17.9 percent to 19.8 percent. Even though this rise is far from negligible, the difference would tend to be much larger in countries where the incidence of disability is greater, which would apply to most developing countries. And even in Britain, even though the overall rate of poverty goes up by only 2 percentage point, the unequal suffering of families with disabled people in Britain is well reflected by the incidence of capability-adjusted poverty for this group being more than 240 percent larger than for the population as a whole. Ignoring the conversion handicap as income-based measures of poverty tend to do has the effect of vastly distorting the level of poverty in families with one or more disabled members.
Furthermore, some of the inputs of good living come not from personal income, but directly from social arrangements, such as institutions for public education and civic facilities. Many disabled children, whether deaf or in wheelchairs, are denied, in effect, reasonable access to elementary education, in many developing countries, because of a lack of arrangements for disabled people. It has been estimated that of the 100 million or more children who are out of school in the world, 40 million or so have disabilities of one kind or another. Most of the schools, particularly in the less developed countries, are built without access for children who have physical disabilities, and most teachers are not trained to deal with children who have handicaps of different kinds, including learning disability. The conversion handicap applies, thus, not only to converting personal incomes into good living, but also to converting social facilities into actually usable opportunities.
One further connection to note is that the lives of the disabled may be more challenged because of unfavourable social attitudes to physical or mental handicap. This is, by itself, a material factor in subjecting disabled people to a conversion handicap, but to these adversities has to be added the possibility of actual mistreatment to which disabled people are often subjected. There is considerable evidence that disabled people even have an increased risk, in many situations, of acquiring HIV and other infection due to physical and sexual abuse. This is conversion handicap with a vengeance. A theory of justice that confines attention to earning handicap only can hardly come to grips with the demands of fairness that are central to the foundations of justice.
I turn now the Rawlsian theory of justice. The concentration on primary goods in the Rawlsian framework relates to his view of individual advantage in terms of the opportunities they enjoy to pursue their respective objectives. Rawls saw these objectives as the pursuit of individual "conceptions of the good," which would vary from person to person. In dealing with this approach to individual advantage, we have to take note of two types of variations that different persons have. The first relates to the different objectives that different persons may have, linked to their respective "conceptions of the good." On this Rawls particularly concentrates. He tends to assume that primary goods in general are versatile enough to cater to the diverse human objectives that different persons may have, but he also discusses why having specially expensive objectives does not entitle a person to more income than others with more modest demands.
The second source of variation is the one with which I am principally concerned here, to wit, the fact that a disabled person may need more resources and primary goods to achieve the same capabilities, even if he or she has exactly the same conception of the good as others have. People with physical or mental disabilities have to incur extra costs to do the same things that others do with ease (such as walk, talk, or see), and sometimes the disabled will not reach comparable levels of activity or achievement as the able-bodied people even with incurring much expense. I have already discussed the conversion problem in the context of differential ability to convert incomes and other resources into the freedom to live well. A similar criticism can be made of the limitation of the Rawlsian focus on primary goods. Even though Rawls's list of primary goods goes well beyond incomes and wealth, conversion handicaps related to disability apply to the entire list of primary goods. This goes against the fairness of taking the holdings of primary goods to be indicators of individual advantage, in assessing distributive justice.
Indeed, the broadening of the informational focus from incomes to primary goods is not in itself adequate to deal with the relevant variations in the relationship between resources and capabilities. Physically or mentally handicapped persons can be much more deprived in terms of what they can do even with the same amounts of primary goods, including "rights, liberties and opportunities, income and wealth, and the social bases of self-respect." The basic problem arises from the fact that, like incomes, primary goods are defined independently of a person's own characteristics. They are assets and resources that are "external" to the person; they do not capture what a person can do with the assets and resources he or she has. A disabled person may have more primary goods than a second person who happens to be able-bodied, and be thus judged to be more - not less - advantaged than the second person, whereas she may be forced (precisely because of her disability) to lead a more restricted and harsher life than the second person.
What about utilitarianism? That approach to justice cannot be accused of concentrating only on external objects, like incomes or primary goods, since the focus of the utility calculus is on human pleasures or desire fulfilment. It is not alienated from human life in the way an accounting of advantage based on incomes or primary goods must be.
The problem with utilitarianism lies elsewhere. It focuses only on mental characteristics and treats those characteristics as adequate clues to the overall advantages that the different persons have. This overlooks in particular the fact that people's pleasures and desires adjust to circumstances, and adapt to adversities. Consider a person who is physically disabled, but who, through initiative and dedication, manages to lead a life of some happiness by taking pleasure from small mercies. In the scale of utility or happiness or pleasure, this person may not, thanks to her initiative and efforts, look particularly disadvantaged at all. And yet her handicap in the form of disability and a general diminution of capability would not have disappeared merely because she happened to be enterprising or happened to have a "sunny" temperament. For example, a physically crippled person would remain handicapped even if she were to take her deprivation cheerfully and adapt creatively to her disadvantage. The disabled person's claim to social help should not really go away so long as significant capability deprivations remain, no matter what level of mental pleasure or happiness the person succeeds in creating for herself despite her handicap.
The basic lesson seems clear enough. If the assessment of distributive justice requires us to take note of the individual's real opportunity to pursue his or her objectives, then it is not adequate to confine attention either to incomes, or to primary goods, or just to pleasures or desires. The actual capabilities of persons must, directly or indirectly, be brought into the accounting of individual disadvantages and predicaments. This is why some of us have thought it necessary to go beyond the older theories of justice, and to focus on capabilities themselves in evaluating distributive justice and fairness.
Since I had the privilege of giving six lectures here, on an earlier occasion, that drew on the capability perspective and its extensive implications for economic and social development (this took the form of lectures delivered at the Bank on the invitation of President Wolfensohn, which were subsequently published as a book, Development as Freedom),5 I shall not spend a lot of time going into the strategy and ramifications of that approach. But the central point is that if we are concerned with substantive freedoms, then we have to look at the actual freedoms, including the corresponding capabilities, that people have. Social attention to disability cannot really be submerged and downsized through opting for the relatively distant perspectives of incomes, primary goods, or pleasures.
The magnitude of the global problem of disability in the world is truly gigantic. The data that I was given by the Bank indicates that more than 600 million people - about one in ten of all human beings - live with some form of significant disability. More than 400 million of them live in developing countries. Furthermore, in the developing world, the disabled are quite often the poorest of the poor in terms of income, but in addition their need for income is greater than that of able-bodied people, since they need money and assistance to try to live normal lives and to attempt to alleviate their handicaps. The impairment of income-earning ability - the earning handicap - is reinforced and much magnified by the conversion handicap: the difficulty in converting incomes and resources into good living.
An understanding of the moral and political demands of disability is important not only because it is such a widespread and impairing feature of humanity, but also because the tragic consequences of disability can be substantially overcome with determined societal help and imaginative intervention. Policies to deal with disability can have a large domain, including the amelioration of the effects of handicap, on the one hand, and programmes to prevent the development of disabilities, on the other. It is extremely important to understand that most disabilities are preventable, and much can be done not only to diminish the penalty of disability but also to reduce the incidence of disability.
Indeed, only a moderate proportion of the 600 million people living with disabilities were doomed to these conditions at conception, or even at birth. For example, maternal malnutrition and childhood undernourishment can make children prone to illnesses and handicaps of health. Blindness can result from diseases linked to infection and lack of clean water. Other disabilities can originate through the effects of polio, measles or AIDS, as well as road accidents and injuries at work. A further issue is that of land mines which are scattered across the troubled territories of the world, and maim as well as kill women, men and especially children. Social intervention against disability has to include prevention as well as management and alleviation.
Given what can be achieved through intelligent and humane intervention, it is amazing how inactive and smug most societies are about the prevalence of the unshared burden of disability. In feeding this inaction, conceptual confusion plays a significant role. Even though the established theories of justice turn out to be inadequate in providing a satisfactory understanding of the handicap of disability, the entrenched hold of these traditional approaches not only affects discourses in philosophy, but also influences the reach of public discussion on this critically important subject. For example, the concentration on income distribution as the principal guide to distributional fairness prevents an understanding of the predicament of disability and its moral and political implications for social analysis. Even the constant use of income-based views of poverty (such as, repeated invoking of the numbers of people who live below $1 of income per day) can distract attention from the full rigour of social deprivation, which combines conversion handicap with earning handicap. Similarly, the rhetoric of happiness and utility also directs attention away from the real disadvantage of disability to the contingent features of mental response to adversity.
"Practical men," John Maynard Keynes has argued, "who believe themselves to be exempt from any intellectual influences, are usually the slaves of some defunct economist." While economics, particularly defunct economics, must take some of the blame for the ills of the world, economics does not have a monopoly in being majestically defunct. Philosophy too - from very high-brow deliberations in abstract treatises to the immediate reaches of everyday reflections on right and wrong - exerts a remarkably powerful influence on the ideas that affect policies, institutions and practice. The theories involved make their own contributions, but sometimes even ideas that are highly creative for some purposes (as the Rawlsian theory of justice - the most significant advance in political philosophy in the last century - certainly is) can end up blocking necessary departures at a later stage of the philosophical debate.
Alfred Tennyson's warning, uttered in a somewhat different context, has a direct bearing on the way theory can sublimate our spontaneous and candid concerns, and why ceaseless engagement is an inescapable necessity:
Hold thou the good: define it well:
For fear divine Philosophy
Should push beyond her mark, and be
Procuress to the Lords of Hell.
We have to resist the massive neglect of the needs of disabled people through conceptual confounding. There is need for clarity here as well as for commitment.
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