“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
