Opening the Door: Disability and An Inclusive Society

“Only when people with disability will really be part of the society; will be educated in every kindergarten and any school with personal assistance; live in the community and not in different institutions; work in all places and in any position with accessible means; and will have full accessibility to the public sphere, people may feel comfortable to sit next to us on the bus.”

 (Ahiya, The World Report on Disability, p. xxi)

Introduction

            The World Report on Disability, a 2011 jointly produced report by the World Health Organization (WHO) and the World Bank Group (WB) highlights the global concern towards disability. The report claims that more than a billion people across the world are now living in disability, with its various forms from temporarily impaired to mentally and physically total dysfunction (Organization & Bank, 2011). The report further states that in the years ahead, the prevalence number on disability is on the rise due to ageing population and the potentially global increase of chronic health diseases such as cancer, diabetes and mental health disorders. With the enactment of the United Nations’ Convention on the Rights of Persons with Disabilities (CPRD), disability is now understood as the issue about human rights. Therefore as those without disabilities, disabled people have the equal rights to access education, health services, employment opportunities and including access to safety and friendly public services and infrastructures, such as buildings, roads, public transportation, shops and parks. However many people living in disability today are still struggling to fully participate and function within their society, and remain continuously experiencing exclusion and disadvantage in their everyday life activities.  During the launching of the ASEAN Disability Forum 2013 earlier this month, Daniel Ruiz de Garibay, an officer of UNESCO’s Indonesia Office shared that many disabled people around the globe still face physical, social, cultural, attitudinal and economic barriers that exclude them from participating effectively as equal members of society (Yusri, 2013). He further states that social stigma has even worsened the lives of the disabled, as their own family restrict their involvement in the community and denying their access to gain better living standard and to live in dignity as human being.

            So, what is disability? Why shall this issue be brought to our concern in regards to social justice and human rights? What is the social exclusion and disadvantage that disabled people face in today’s contemporary society and how to enhance their participation to the inclusive society and sustainable development that we want to achieve? This paper discusses and examines disability and social injustice based on the theory of redistribution and recognition introduced by both Nancy Fraser and Axel Honneth. Fraser’s theory of justice is used here because it helps to understand disability in today’s modern society as it encompasses analytical framework that highlights socio-economical and cultural injustice with the parity of participation as a normative approach. Whereas Honneth’s theory of recognition offers an understanding of contemporary social development that goes beyond ideas of acknowledging identity and differences as individual and social group within society. Because disability is complex and multifaceted phenomenon in a society, which involves diverse crucial factors, this paper limits the concept to the understanding of disability by mostly using the social model of disability and not to emphasize on the use of medical model of disability. By using the social model, this paper argues that disabled people are still very much disadvantaged and excluded especially when it comes to poverty, employment and acknowledgement of their participation as an individual within society. The disabled, does not only face socioeconomic injustice in their daily lives, but suffers a cultural-valuational differentiation as well.

           

Understanding Disability and Why Does It Matters

            On the one hand, disability is accepted as part of human condition where in some point of someone’s life may be temporarily or permanently impaired functioning of the human physical and mental activities. If it is not during the productive age of a human live course, it may come during the old age where people experiencing difficulties and limitation due to physical or mental functioning. This means that disability is in everyone’s concern, disabled or non-disabled. Furthermore, sometimes in the journey of our lives, we may have to take responsibility in providing support and care for our disabled family member, relative or friend. On the other hand, disability is known as a complex, dynamic and multidimensional area. This lies on the shift of perspective in viewing disability from an individual and medical model, where seeing disabled as a person with specific problem in relation to their health condition, to a structural and social model where society play larger roles in labeling people as disabled, which sometimes this goes beyond than just their physical limitation and condition. In regards to this, Baart and Maier (2013 pp. 18-20) point out that to understand disability we must put into account the three major dimensions, which are the impairments condition, activity limitations, and social norms or restriction for the disabled to equally participate. Similarly, the United Nations CRPD interprets disability as a result of dynamic interaction between health conditions and contextual factors (environmental and personal factors). The convention, which also acknowledges disability as a human rights issue, further states that attitudinal and environmental barriers have long hindered people with disability to equally participate within society. While discrimination may not intend purposely, society and the current systems in-placed have indirectly and in some parts directly exclude and disadvantage people with disability by not taking their needs into account. Therefore, this paper would further argues that addressing and removing those barriers would be needed to ensure the social participation of persons with disability.  For example, changes need to be made in regards to creating accessible environment that can improve participation and inclusion of the disabled. Those can be in the form of establishing and implementing policies that will support and lead to the inclusive society and the improved of service delivery system and provision, such as accessible design of public buildings, transportation, better healthcare and education services for the disabled.

            With the enactment of the UN Convention and the issuance of 2011 World Disability Report, the plight of people with disability has been raised as a global concern. In both documents, there have been shown that there are significant increases on the number of people with disability across the globe. Whereas the 2010 global population estimates that about 15 percent of the population today lives with some form of disability. Furthermore about 5.1 percent of those or about 95 million people, as according to the measurement done by the Global Burden of Disease, are children at the age of 0-14. This number is predicted to be growing with the higher risk of disability at the older ages and a global increase in chronic health conditions, which affected the lives of people within the contemporary society.  In contrast to this, inadequate policies, negative attitudes such as discrimination and stigma, lack of provision of services and problems with services delivery remain a significant hindrance to the daily lives of persons with disability. Those contribute in shaping social injustice and exclusion of the disabled that will be further discussed at the following section.

Social Justice: Disability and Socioeconomic Injustice

                  In her theory of social justice, Nancy Fraser conceptualizes redistribution and recognition as two distinct paradigms of justice, which rooted in the processes and practices that systematically disadvantage some groups of people within society. (Fraser, 1995, pp. 69-70). Indeed, Fraser does not specifically address social injustice experiences by the disabled people, but rather points out more on the case of the working class, people of color, homosexual and gender, her approach highlighted on the concept of participation as a normative guiding principle. To disabled people and those concerns with disability issue, this is claimed as the major component to ensure social inclusion and justice (Gleeson, 1997, pp. 182-183; Hugemark & Roman, 2001). As also argues by this paper, that without equal parity of participation, the disabled’s voices would not be heard and acknowledged. Their involvement, into diverse aspect of lives such as socio, political, cultural and economic arenas, would not be seen nor recognized. Their role and contribution to the world may not be counted. Samantha Jenkinson (2013 ) a western Australian disability advocate nominated for the 2013 National Disability Awards and the Chairperson of Australian Federation of Disability Organization (AFDO) states that social participation for people with disability especially in decision making and capacity building must be put into a national agenda and strategy to ensure that disabled person, as well as the abled, will have similar control and ability to direct their own role and support, speak for their own interest and run the services which fit for themselves.

            Refer to Fraser’s concept; one of the social injustices occurs in today’s modern society is as what rooted in the political, social and economic structures of society. This has caused economic exploitation, marginalization and deprivation. In this type of injustice, as according to Fraser, it will require a technique of political redistribution as a form to remedy the problem. That could be in the form of income distribution, regrouping labor’s division, or restructuring economics’ structures.

Disability, as this paper argues, is affected by the general mechanism that currently structured the globalized capitalist economic model which strongly market-profit-based oriented and most importantly, commodifiying both capital and labor. In this structure only those who are productive and competitive can exist and stay longer in the market, leaving alone and exclude the less-productive worker or those considered as higher cost and unskilled labor to the side. This condition has caused the unemployment and limit access and opportunity to engage the labor market by the disabled people. Furthermore it affects the lives of the disabled into a higher rate of poverty, compare to those people without disabilities. As according to the WHO and the World Bank’s report, the disabled people have the lowest employment rates compares other groups of people. Furthermore, even if they are already in the labor market, not only that they commonly earn less but also less able to sustain to remain in the workplace (Organization & Bank, 2011, pp. 262-263). In this respect and refer back to the theory of injustice by Fraser, this paper claims that disabled people experiencing social injustice due to political-economic differentiation. They face economic marginalization as they often poorly paid whenever they are in the job and depending on their disability condition, may also deprived and “missing out” as they are being denied towards an adequate material standard of living. As following the international convention where define deprivation as an enforced lack of socially perceived essentials (Mack & Lansley, 1985, p. 39) and it focuses on what people can not afford, the study about the disadvantage and social exclusion in Australia in 2007 identified that among all vulnerable groups, people with a disability are the third highest group in the society with the high rates incidence of deprivation, after sole parent families and indigenous Australian (Saunders, Naidoo, & Griffiths, 2007, pp. 50-53). Whereas in regard to poverty, people with disability are suffered with poor living condition and lack of assets due to being marginalized from economic activities and unemployment in the longer periods. This has led them into long term problems such as malnutrition, poor housing and lack of education.  Nevertheless, lack of political and policy support have also contributes to the disadvantages and exclusion experience by the disabled persons. There is a need to ensure the wellbeing of people with disabilities, from their access to health, education, employment and accessible infrastructure that considered “design for all”. This can only be achieved with the availability of supportive policies and programmes that ensure disabled persons are included, contributed, and benefited equally from all policies and development efforts.  

            On the contrary, there are conditions where disabilities in certain level do not get affected by the socioeconomic factor as described above. For example, in the case of those having moderate and limited low vision or hearing impairment compare to those having total loss of vision or permanently hearing loss. Unlikely the second group which may not have an alternative aid devices, the first group of disabled may compensate their impairment with the availability of aid devices such as glasses, screen-reading computer and hearing devices. This will enable them to participate into the workforce and not being excluded by the society or the system. In this context, the system and environment do not differentiate between groups of people with certain impairment and those without impairment. From an economic and productivity perspective, as long as someone’s impairment does not affect and reduce productivity, they can remain in the market and included within society (Bickenbach, 1993). With the diverse group of disabled people within society, Bickenbach states that not all disabled people experience exclusion and disadvantage due to socioeconomic structures, but more depend on how severe the disability condition and whether compensation devices or other alternative are available on the market to support them. Similarly, Danermark (2002, p. 61) argues that disability should not indicated as a one specific type of social group requires specific needs, as disabled people are too complex and heterogeneous, just like the-abled group of people. Following the International Classification of Functioning, Disability and Health model developed by Tom Shakespeare, Danermark views disability as just about limitations of activities and should no longer become an issue whether its included or excluded, as disabled people are not form a separate group. Furthermore, as to improve the living condition of people with disability, a rich and integrated framework to develop an understanding and support a barrier-free environment on disability has been developed and expected that it will contribute to reduce the exclusion and discrimination towards people with disabilities in the society (Commission, 2010). The global initiative, such as disability movement, is an example on one of the outcome of the framework that will continue to fight for an equal rights and opportunities for people with disabilities.

Social Justice: Disability and Cultural Injustice

            Other than the needs for political-economic change, Fraser argues that social justice in the contemporary societies also demand for cultural turn. People in a post-socialist age as according to her and also by Axel Honneth, are struggle to be recognized and this require changes in the social patterns of representation, interpretation and communication (Fraser, 1998; Honneth, 1995). In related to disability, if there is any, then the question would be what are the cultural injustice as according to the theory of recognition that affect the live of people with disability, regardless of the different type of impairment or disability they have?

This paper argues that people with disability suffer from social discrimination and stigma that rooted in the cultural-valuational structure within society. They are not only having limited equal access to their basic needs such as healthcare, education, and employment opportunity, but also culturally devalued in contemporary society. Take an example of what happened to people with disability in Indonesia. If someone was born with disability, their families will not only restrict their involvement in the community, but also denying their rights to access education and other social aspects that needed to make them feel recognized, respected and able to live in dignity. Children with disability in Indonesia are often discriminated by the community and their own families. Their families tend to hide them away at home and reluctant to send them to school. But when the disabled children can go to school, they may have fewer friends and often bullied in school because of their disability status. In educational setting, students with disabilities are the most vulnerable and they often become the target of violence, verbal abuse and social isolation, compared with the other-abled students (Organization & Bank, 2011, p. 214). In many cases as documented, parent of a disabled child often isolate their child, as they feel embarrassed to have a family member who is born with disability. In this context, families of the disabled are also suffered from social stigma to have a child with disability in the community. People and society still associate a person with disability, as someone whom being cursed because of their previous transgressions, possessed by evil spirits, or carriers of bad fortune. Recent documentary filming an ethnographic research by Dr. Erminia Colucci has uncovered the story of Indonesian practice of “Pasung”, a form where people with mental disorder are chained and locked in the “cage” for many years (Arnott, 2013). This tradition has long been rooted in the society, where people devalued a person with disability as possessed by evil spirit and dark magic and therefore need to be isolated from their community (Ryan, 2013). The stigma face by people with mental illness or intellectually disabled are not only strongly occurred in a developing country like Indonesia. But even in the advanced western society, mental illness still misunderstood, sometimes seen as a crime and discriminated by the society (Ferrigno, 2012). Unlikely the other type of illness, people is not even dare to talk openly about mental illness, and often segregated the patient of mental illness from other physiological illness such as cancer or diabetes.  

Interestingly, dissimilar disability or impairment may also have different variation of treatment from the perspective of recognition. For example, people with a moderate vision impairment may not suffer injustice due to culturally devalued by their community as they can easily wearing glasses, contact lenses and screen-reading computer to support their daily activity and at work. Whereas on the other hand, people having a moderate hearing impairment and wearing a hearing aid may have different experience. They may run the risk by being culturally devalued as people see them differently to their appearance and often feel that it will require more time in making communication and interaction with the deaf people. From the second case here, the root of injustice is institutionalized on the cultural values that seeing some social actors as less than the other, and therefore may prevent or limit their participation from the other peers (Fraser, 2000, pp. 114-115).  

Misconceptions about disability are also playing a role in excluding persons with disability to be fully participating in the society. Some prejudices may occur in seeing disabled as less productive, unskilled and fragile compared to those without disabilities. Sadly, this misconception occurs not only among the non-disabled people, but also to the family members and the disabled themselves. Because of experiencing culturally injustice for so long, people with disabilities often have low self-esteem, self-confidence, self-respect and lower expectation about their own involvement and contribution that they can make for their community. In regards to this, Honneth (1995, pp. 162-164) highlights that as an individual and human being where we cannot live alone in the society, we all have a need to be recognized, and by being recognized it will build our self-confidence and feeling of being respected. However as a turning point to this, the convention on the Rights of Persons with Disabilities (CPRD) has opened the door of opportunity for people with disabilities to be recognized and to have an equal participation in life and in the society. Furthermore, the convention has contributed in re-shaping the new understanding on disability that it is not physical limitations of person with disabilities that hamper social inclusion and create inequalities, but rather the physical, institutional and attitudinal barriers that caused by society.

Despite all the cultural injustice as mentioned above, there are evidences to show on the recognition towards people with disability and their participation within contemporary society.  Other than the UN Convention, the rights of people with disabilities have also been recognized through various new developed legislations and policies, which anchored the needs and problems of disabled, at the national and international level across the UN countries. Using again with the case of disability in Indonesia, the Government has ratified the UN Convention of CRPD in November 2011. To-date in Indonesia, discrimination against persons with disabilities is prohibited, including the practice of “pasung” is now in progress to being eradicated from the Indonesian culture.  Even though it has just started, but more opportunities are now being given to employ people with disability in the government, public and private sector (Indonesia, 2012). Whereas in the western country such as Australia, the “Closing the Gap” Initiative has been designed as a joint effort to reduce the disadvantage experienced by the disabled Indigenous Australian. One of the identified strategy include in developing an understanding of local community and family structures to support a social integration among groups of indigenous communities and other groups within society (Government, 2011). All are aim to improve the living condition and wellbeing of disabled persons and in order to achieve an inclusive society.

Disability: Bivalent Collectivities and the Question of Remedy

            Aside from Fraser’s (1998) distinction on redistribution and recognition as two different perspectives, she further advocates that both are needed to be address as an integrative approach, as both are intertwined and mutually supportive. Similarly like Fraser’s analysis of injustices experience by both gender and race, this paper views disability is also an example of the bivalent collectivities. The reason is because disability is a complex phenomenon, where it intersects a wide variety of knowledge e.g. medical science, politics-social-economy and its practices, and cultural norms and conditions of living. Moreover, people with disabilities are also very heterogeneous and the forms of exclusion and discrimination they experience can hardly be explained by their impairment status only. Therefore in order to redressing the disability injustice, it will require transformative and affirmative changes in both political economy and cultural structures.

            In relation to the politics of redistribution, it is vital to emphasis the distribution of economic resources for the disabled. Here, transformative remedies such as restructuring the national welfare policy e.g. social security and universal healthcare system, combine with supportive law and regulation that accommodate the needs of people with disabilities, as well as the needs of people without impairment, are important to ensure social equality and participation. As an example to the previous case mentioned above is about the need for people with hearing loss.  A redistribution of economic resources would be vital to consider and provide for them such as an appropriate provision of sign-language interpreters to enable deaf people can equally participate in the community.

            Whereas in regards to recognition and remedy for cultural injustice, affirmative action such as revaluing the role and contribution of people with disability will eliminate the misrecognition and disrespect within society. Affirmative recognition can also be done by promoting group differentiation and to respect differences within society. That is no matter there are differences in abilities, still all shall be based on the value of equal rights to all human beings. As an example to be pointed out here is on the important role of the Australian National Disability Insurance Scheme (NDIS) to minimize the impacts of disability (Government, 2011). The policy does not only promote the opportunity for the disabled, but it also as an awareness raising to general community about issues on disability as a way to combat stereotypes. Furthermore, the policy promotes the advantage and potential benefit of an inclusive society to the wider community in Australia.

Conclusion

Despite an effort such as the UN Convention that has been taken to address the social injustice suffer by people with disability, still in today’s society they continuously experiencing physical, social, economic, cultural and attitudinal barriers that exclude and disadvantage them from society.  When it comes to access equal opportunity and inclusion, disabled people are amongst the most invisible and vulnerable in the world. They face not only socioeconomic injustice, but furthermore a cultural-valuational differentiation as well. Therefore a holistic approach to eradicate those barriers that affect the inclusion and involvement of disabled needed to be addressed. Transformative restructuring of socioeconomic structures and affirmative action to reshape the values and contribution of the disabled people within society shall be put into account to all inclusion and empowerment of national and international agenda and strategy. All effort that incorporate the rights and wellbeing of all groups within society, including people with disability and their needs, are must include to build a sustainable development and an inclusive knowledge societies for the times ahead.

Author:

Lia Marpaung-Abidin