Volume: IV, Issue: II, July-December 2013
BLINDNESS AND SOCIAL EXCLUSION: LOCATING THE DISCOURSE WITHIN THE SOLIDARITY PARADIGM
There is a multitude of variation regarding what people understand by disability. This may owe to the different ways in which people (individuals, community and society) experience and/or perceive disability. Scholars have been attempting to define disability within frameworks like that of the medical model and the social model. Over the last several years, disability studies has also formed a vibrant new field of inquiry within the critical genre of identity studies. Another perspective on disability, blindness in particular, may be to consider it in the light of ‘social exclusion’. Both the frameworks have entirely different policy ramifications, and the paper argues for the usefulness of the social exclusion approach from the point of view of making an effective policy framework for blindness. Finally, it raises a plea to move towards the solidarity paradigm within a more communitarian conception of society for dealing with blindness as disability. Argument in favour of this hypothesis may be built around an illustration of locating the discourse of corneal blindness within the ‘solidarity paradigm’.
Disability: Concept and Models
Disability has no settled meaning. In other words, there is a multitude of variation regarding what people understand by this single term. This may owe to the different ways in which people (individuals, community and society) experience and/or perceive disability. Further, the same ‘disability’ from the medical point of view, may be experienced as differentially disabling by individuals placed in different contexts, and perceived differently in societies with different institutions and structures in place. Scholars have been attempting to define disability within some frameworks—the three most influential of these being the two WHO frameworks [WHO 1980, 1994, 2001], and the various versions of Nagi’s scheme [Nagi, 1965, 1991].
Nagi distinguishes and delineates four different levels- active pathology, impairment, functional limitation and disability [1965: 101-103]. While the first two are phenomena at the level of tissues, organs, or body systems, functional limitations are at the personal level and disability at the social level [1991: 322]. Again, functional limitation and disability are both performance measures, but of “organismic” and “social” performance, respectively [Boorse 2010: 58]. Because of the social nature of disability, it is a “relational” concept, whereas the other three categories are pure “attributes” of the individual [Nagi 1991:317]. A similar claim is made by the WHO’s International Classification of Impairments, Disabilities and Handicaps; the ICIDH [1980:31].
As would be later discussed, since social exclusion is an approach to discover the relational roots of (any form of) deprivation [Sen, 2000], and if we consider disability to have linkages with deprivation, then, perhaps, the approach of social exclusion may methodologically better equip us in understanding disability in general and blindness in particular as exclusionary, and further developing a more inclusionary framework.
ICIDH further describes impairment, disability, and handicap as disturbances at the organ level, personal level, and social levels, respectively [1980: 14, 29]. Criticisms of the ICIDH model by the disability activists, particularly those using the ‘social model’, led the WHO to adopt a new conceptual scheme to define disability, encapsulated in WHO’s revised document, International Classification of Functioning, Disability and Health [ICF, 2001]. The ICIDH was criticized for being representative of the ‘individual or medical model’ of disability, a criticism which the ICF (also referred to as ICIDH-2) tried to meet.
The medical model considers the disabled as the subject, locating the problem or deficiency within the disabled, which needs to be corrected. The medical model posits that disability is purely a biological phenomenon, a physical or mental impairment that makes the individual unable to participate in mainstream social activities, including work [Stapleton, 2006: 706].
The social model perceives disability as a relationship between the individual and the society. This approach traces disability as a discourse that discriminates, marginalizes and excludes the ‘disabled’. In this perception, disability lies not within the individual but the societal perceptions and responses which are ‘disabling’. The disabling structures and mechanisms place barriers to fuller participation of the ‘disabled’ in the society. That disability is caused by society, not by biomedical features of the individual, is the basic thesis of the “social model” of disability [Boorse, 2010: 58]. This approach locates firmly the issue of disability in the realm of social exclusion. As WHO itself makes it explicit, “The ICF is based on an integration of these two opposing models” [WHO, 2001: 20]. Barnes and Mercer have termed it as a new ‘biopsychosocial’ approach [2003: 9].
Over the last several years, disability studies has moved out of the applied fields of medicine, social work and rehabilitation to become a vibrant new field of inquiry within the critical genre of identity studies [Garland-Thomson 2002: 1]. This has enriched the discourse of disability with fresh inquiry on issues of social justice, subject formation, subjugated knowledge and collective action with regard to the ‘disabled’. The implication is bringing to the mandate the study of disability as a category of analysis, thereby bringing to the centre stage of discourse questions of ‘the status of the lived body, the medicalization of the body, the politics of appearance, the privilege of normalcy, the social construction of identity, and the commitment to integration’ [Garland-Thomson, 2002: 4]. The perceptions about disability are in dynamic interaction with policy framework, both influencing each other in significant ways.
Blindness as Disability
The range of blind experience, like the range of visual experience, is infinitely diverse [Rodas, 2009: 119]. What further complicates the matter is that just as the previous discussion on disability makes it clear, that blindness has varying meanings and implications from the medical, social and economic points of view. Blindness is defined as vision loss which severely interferes with daily functioning and usually requires the use of alternative methods to accomplish routine as well as work related tasks [Zaborowski, 1997: 216]. Blindness in India is medically defined as Best Corrected Visual Acuity of less than 6/60. As per the latest NPCB data, 14 million people in India are blind [www.npcb.nic.in/index 1]. The total number of blind in the world is 39 million [WHO, 2012: 3]. As per WHO data (derived), only about 15% of the total blindness in the world is incurable and unavoidable [WHO, 2004: 849]. This shows that a major part of the blind population in the world is Indian. Also, the majority of blind people are suffering from avoidable and/ or curable blindness. This questions the status of public health in the world, specially developing world, and even more so in India. An analysis of public policy with regard to blindness is necessary to assess the reasons for this.
Seen from the perspective of Nagi’s framework, blindness entails active pathology and impairment, at the level of the body. Blindness also manifests as functional limitation and disability at the personal social levels respectively. The WHO framework also establishes blindness as a disability.
Blindness and Social Exclusion
In a society with institutions and structures designed in accordance with the needs of the ‘sighted’ and not the ‘sightless’, blindness is associated with physical, psychological, emotional, social and economic disadvantage. As every disadvantage interacts with other disadvantages, it leads to what may be called ‘exclusion’. The exclusion may manifest across a wide spectrum ranging from passive or active exclusion to unfavourable inclusion [Sen, 2000]. Complete inclusion of the blind in the mainstream of society is still a dream sought after. Exclusion emanating out of blindness may get coupled with other exclusions, like being a girl (gender based exclusion), a dalit (caste based exclusion), or poor (class based exclusion), or being a child etc. Exclusion at every individual site multiplies, and not only adds to, exclusions on other sites. Thus being a blind girl may not only be doubly excluded but several times more than that. At a time in human history when girls with sight have deeply internalized fears regarding their security and safety, the enormity of the vulnerability of a blind girl/woman can be only incompletely imagined. Coupled with poverty can make it hundreds of times more vulnerable situation for them.
While ‘study of groups’ is central to any conceptualization based on the social exclusion approach, it is not only the study of the blind people. For the effects of disadvantages and exclusions faced by certain groups radiate to other groups of the society as well. Also, associated with this is the discourse of social responsibility. While all of us may remain content with the assumption that we have not contributed to anybody’s blindness, the social model of disability posits disability in the societal perceptions, institutions and structures, and thus calls off all attempts at absolving us of our contribution to such a process of ‘disabling’.
Another perspective on disability, blindness in particular, may be to consider it in the light of ‘social exclusion’. As a concept, the trajectory of ‘social exclusion’, may be traced back from the French corridors of policy making grappling with the issue of ‘social cohesion’, and solidarity, to discourses on poverty and social exclusion within a more liberal and individualist framework in the UK. The invention of the term social exclusion is usually attributed to Rene Lenoir, then Secrétaire d’Etàt a l’Action Sociale in the Chirac government, who used the term for the first time in 1974. Lenoir’s excluded included a wide variety of people: not only the poor, but also handicapped, suicidal and aged people, abused children, substance abusers, etc.–about 10 per cent of the French population. In France, Social exclusion was defined as a rupture of the social fabric, and attributed to a failure of the state. However, the way in which the concept has been used across Europe differs significantly. The British use of the term seems strongly rooted in liberal individualism. While the French approach premised on solidarity included the ‘handicapped’ (another term for the disabled), among the list of the ‘excluded’, within the liberal individualist paradigm, disability would be seen more as ‘individual’s lack of efficiency- as a deficiency rendering him/her incapable of competing in the market. Thus, within the liberal individualist framework, disability/blindness would be considered to be individual’s failure resulting in labour market exclusion. Also, according to the former paradigm, social exclusion refers to processes which restrict full participation of an individual or groups into the mainstream of activities in the society. Seen from this perspective, blindness may be termed as social exclusion, in so far as it restricts the participation of the disabled seen from both-the medical and the social model. Both the frameworks have entirely different policy ramifications, and the paper argues for the usefulness of the social exclusion approach from the point of view of making an effective policy framework for blindness. Finally, it raises a plea to move towards the solidarity paradigm within a more communitarian conception of society for dealing with blindness as disability. Argument in favour of this hypothesis may be built around an illustration of locating the discourse of corneal blindness within the ‘solidarity paradigm’.
Magnitude of Corneal Blindness in India
As per the latest report of NPCB there are approximately 4.9 million people with corneal blindness in our country. Every year approximately 50 thousand more people are added to the existing list. Almost one third of them are children. Every minute a person loses his vision in India due to various reasons. However, this form of blindness falls within the broader spectrum of ‘curable blindness’. The solution to cure the corneally blind people is corneal transplantation which may be made possible if someone donates his/her eyes after death.
Corneal Donation in India: Issues and Concerns
Figures regarding corneal donations speak volumes about the deplorable state with respect to the possibilities in this direction, potential to realize these possibilities, and what is the reality on ground. Although around 10 million deaths take place every year in our country, only 20 thousand people donate their eyes. We require at least 2 lac corneas every year to clear the backlog. The figures may go higher once we set on the way to achieve targets. A small neighboring country, Sri Lanka has a higher rate of eye donation compared to our country. Sri Lanka, moreover, distributes cornea to around 80 countries around the world. What inhibits the path of such success stories to be written in our country, much bigger in size to Sri Lanka, and much more resourceful in terms of a huge human resource, who may assume different roles ranging from being not only the potential donors, but also volunteers as planners, implementers, motivators, educators or just informants, championing the noble cause? Perhaps it is high time for all of us to realize that eye donation is not only a personal action, but much more than that, a social act, wherein a conscientious and aware society itself becomes both, a participant giver, as well as a participant recipient. So much so, as the issue of eye donation is closely connected with the discourses on social disadvantage and social exclusion.
Organ/ Corneal donation: Beliefs and practices as potent inhibitors or prime motivators
The shortage of organs including the cornea for transplantation is persistent and chronic. Perhaps it is explained in the following extract [Childress, 2001: 1]:
Organ transplantation is a very complex area, because the human body evokes various beliefs, symbols, sentiments, and emotions as well as various rituals and social practices. From a rationalistic standpoint, some policies to increase the supply of transplantable organs may appear to be quite defensible but then turn out to be ineffective and perhaps even counterproductive because of inadequate attention to these rich and complex features of human body parts. Excessively rationalistic policies neglect deep beliefs, symbols, sentiments, and emotions and the like, and that deficiency marks many actual and proposed policies. In addition, policies are often too individualistic and too legalistic.
While the beliefs and practices may be potent inhibitors for the task of cornea procurement, this drives towards the appeal to rationality for promoting organ donation. However, this may act as further deterrent, as it may neglect deep-seated faith systems and emotionality. Also, such a ‘resource model’ which sees human body as a resource, goes against the age-old beliefs persistent within all faith systems regarding the human body to be the ‘temple’, an embodiment of the divine. “In the Western faith traditions (primarily Judaism, Christianity, and Islam), theological holism takes as its starting point an assessment about the body in its organic totality and in its fundamental integration with the person’s sense of self. This assessment perhaps is characterized best as an expression of "awe" or "reverence" toward the person, who is portrayed theologically as an embodied self in the "image of God" (imago Dei)” [Campbell 1998: 277]. ‘Theological holism is thus posed in fundamental conflict with scientific reductionism’, so far as the ‘body is invested with an aura of sacrality’ [Campbell 1998: 277].
The answer perhaps lies not with the rejection of beliefs and practices with a rationalistic approach within a more scientific reductionist paradigm, but to locate niches within this cultural framework where the plea for organ donation may be grounded. While this may form the subject matter for another detailed paper, for the purpose of illustration, we may bring in few examples. A difference in the conception of the body is found in Hinduism. The body here is not as intrinsic to the sense of self—“Aham Brahmasmi”. The body is only the material ‘clothing’ of the soul which may be changed. Such a conception makes it easier to be less possessive about the body. This presents a model which is contrary to the ‘property’ model of body within a more liberal individualistic paradigm. This is carried further in the Hindu conception, where man is not considered to be a separate identity or isolated unit; but is a part of a greater whole, the cosmic integrity. The maintenance of harmony within this cosmic integrity- ṛta, demands the individual to be conscious of his/ her identity as part of an integrated whole and not atomistic self. Accordingly, the individual acquires certain debts with his/her birth itself- ṛṇa, from the cosmic integrity, which have to be paid back by the performance of yajña. Accordingly the theory of five debts—Pitṛṛṇa, Ṛshiṛṇa, Devaṛṇa, Nṛrna, and Bhūtaṛṇa, is complemented by a theory of five yajñas—the pancamahāyajñas—Pitṛyajña, Brhmayajña, Devayajña, Manuṣyayajña, Bhūtayajña. In this conception the giver gains by giving itself, for giving/ offering is an opportunity to pay off the debts; while the recipient acquires a debt, not towards the giver, but towards the cosmic integrity, which has to be paid off. This breaks the hierarchy between the giver and the recipient very much characteristic of the ‘donation paradigm’. This may also provide a ground for moving away from the donation paradigm to ‘offering’ paradigm.
Similar foundations strengthening the solidarity paradigm based on ‘offering’ and not ‘donation based on charity’ may be traced in other religions and faith-systems too. In Buddhism, the path of practice suggested for the laypeople entails dāna, śīla and bhavana. The dāna here differs from charity as it represents almsgiving to the spiritually evolved in humility, and hence, it is the means for making merit (Pāli-punna). The higher rate of cornea donation in Sri Lanka may perhaps be explained on the basis of prevalence of Buddhism there.
In Islam, one of the most important principles is that all things belong to God, and therefore, wealth is held by human beings in trust. The giving of alms—zakat—is the third of the five pillars of Islam. The literal meaning of Zakat is ‘to purify’, and according to Sharia, this is an act of worship. Christianity also places premium on giving.
Recommendations for Policy Framework
Two assumptions foreground any discussion regarding recommendations for policy framework on corneal blindness: 1) That something needs to be done for increasing the supply of cornea for enhancing social welfare; 2) That the societal and policy level efforts for increasing the supply of cornea need to be contained within the diffuse ethical boundaries.
Placing blindness within the solidarity paradigm, where disability is seen as social exclusion- ‘a rupture in the social fabric’, for which the responsibility lies with the State, emphasizes the role of public policy in dealing with blindness as exclusionary. However, within a liberal-individualist paradigm, blindness is individual ‘deficiency’ or incompetence, which rather has a social cost, disabling the atomistic individual to compete in the market resulting in exclusion from labour market. Labour being defined in terms of efficiency rather than deficiency, ability rather than disability, perfection of the body and mind rather than imperfection implicit within blindness; the exclusion of the blind from the labour market becomes complete and irreversible, without correctives to the deficiency, disability or imperfection. Further, since the liberal-individualist paradigm emphasizes upon the individual’s responsibility rather than the responsibility of the state, the role of public policy in such ‘correction’ is minimal. The only viable option within this paradigm remains marketization of organ donation.
Organ/Corneal procurement Policy in India is currently predicated upon the assumption that the altruistic system is the most appropriate and acceptable model. This model conceptualizes donated organs as ‘gifts’ freely given by the donor to the person in need. Payment to donor or donor-family is in fact, prohibited and punishable. The truly altruistic model precludes the use of financial incentives completely. However, the altruistic model is constrained in the sense that it has failed in meeting the demand for cornea in the country.
This has lead to questioning regarding the adequacy of altruism as the value to suggest appropriate model for organ donation. Should altruism be valued at the expense of other values such as justice? Alternatively, should the notion of altruism as an absolute value be given up in favour of modest incentives for donation? Such questions seem to go in favour of applying the logic of the market to organ donation with a largely social purpose. However, scholars have pointed towards the moral and ethical issues involved in introducing financial incentives for organ donation [Evans 2003, Murray 1996]. The negative potential of such a policy became evident with the steep rise in human organ trafficking in India, making it rampant by the 1990s. In 1990 itself, 2000 kidneys were sold in India [Fox and Swazey, 1992: 68]. The central argument that goes against marketization of human organs/ tissues is that it shall result in commodification of the parts of human body, and also therefore, imply a relation of ‘commodity-exchange’ between the donor and the recipient, leaving ample scope for self-interest to prevail and corrupt the scenario.
This brings us to the question of reconsidering the prioritization of social responsibilities vis-à-vis the procurement and distribution of organs for transplantation, within the context of a society where multiple moral systems co-exist. Perhaps another model may be to extricate eye donation from the realm of private/ individual choice (premised on either of the two- the altruistic model or the rational choice model based on the logic of the market) to the realm of community choice; considering eyes as neither personal possessions to be gifted in an altruistic vein, nor as commodities to be exchanged for financial incentives, but as ‘community or social good’, to be protected and preserved from being destroyed in individual interest and as individual choice. This further warrants an examination of the existing policy framework guiding organ procurement system from the viewpoint of its adequacy to address existing concerns within the Indian community. Such a contextualization seems to suggest that the answer lies not with the appeal to reason, or making rational choice; but rather building upon cultural notions instead of their reason-based rejection. This implies locating cultural niches as opportunities within the challenges posed by faith-systems, beliefs and practices. The communitarian model would also reconceptualize the donor- recipient relationship in the context of redefining the need for supply of cornea/eyes as ‘social need’ instead of ‘need of the disabled as an individual or as a group’.
Considering eyes or human organs as ‘social or community goods’, also resolves the inherent tension between the medical, social and critical models of disability, and pushes the solidarity paradigm further with renewed vigour by blurring the divide between the ‘able-bodied’ and the ‘disabled’, as the self and the other. It thus marks a step towards a more inclusive conception of society sustained by a more inclusive public policy.
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