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					Disability Today and Tomorrow

By Ms Anuradha Mohit
Special Rapporteur,
National Human Rights Commission, India

Background
It is estimated that there are about 600 million people in the world who have disability of one
form or another. Over two-thirds of them live in developing countries with a high density of their
population in Sub-Saharan Africa and the South East Asian region. There is a high correlation
between disability and poverty and their social exclusion is direct and evident throughout the
world. In order to achieve the target of “full participation and equality” for persons with
disabilities, the Asian and Pacific Decade of Disabled Persons, 1993-2002, is a unique regional
initiative undertaken by 42 governments in the Asian and Pacific region. The Decade Agenda for
Action adopted by the Commission at its forty-ninth session in 1993, serves as a blueprint for
action by all sectors in the ESCAP region that are concerned with strengthening the participation
of persons with disabilities, in the mainstream development process.


Change in Perception
The adoption of the United Nations Standard Rules and the Asian and Pacific Decade in the year
1993 is not a mere coincidence. These initiatives, in fact, signify the momentum, awareness and
aspirations generated by the preceding landmark events such as the World Programme of Action
and the United Nations Decade of Persons with Disabilities. Most importantly, they reflect a new
and collective understanding that disability is not an individual pathology but is a human rights
issue meaning that “all human beings are born free and equal in rights and dignity.” At the heart
of human rights mission lies the respect for variations in human cultures and the recognition that
people are different on several considerations such as gender, race and disability. Nevertheless,
concerning their rights and dignity, all people are the same but it does not imply that all people
should be treated in the same or similar way. The ethical principle of justice implies that people
with different needs are treated differently but the difference of treatment must not be decided on
arbitrarily selected norms. The formal equality discourse actually builds up on the idea of the
Greek philosopher, Aristotle, who said that, “things that are alike should be treated alike,
whereas things that are unalike should be treated unalike in proportion to their un-alikeness.” In
the introduction to the Standard Rules On The Equalization Of Opportunities For Persons with
Disabilities, 1993, the principle of „equal rights‟ is described as implying “that the needs of each
and every individual are of equal importance, that those needs must be made the basis for the
planning of societies and that all resources must be employed in such a way as to ensure that
every individual has equal opportunities for participation.” A coherent programme of “equality
of opportunity” entails tackling deep-rooted social attitudes to disability. Besides that, equality
entitles each person to equal membership in society. Therefore, every human being has a claim
upon his or her society and government, as a matter of right, and not as a privilege or special
favour.
Sustainable Arrangement
 In addition to gaining a human rights perspective, there is a growing realization that disability is
not a deviation, but is an inevitable and integral characteristic of every society. Therefore, the
solution does not lie in short-term alleviation of individual problems using state institutions,
voluntary organizations and bilateral and multilateral funding bodies. Instead, the need is to
integrate disability dimension in all the basic structures that are fundamental to the organization
of every society. No meaningful change can come about for persons with disabilities unless the
various social and economic processes of civil society are redefined on disability-inclusive
standards.

The policy areas prioritized in the Decade Agenda have created the required legal and policy
framework for the creation of an inclusive society. Thirteen Governments in the ESCAP region
have passed comprehensive disability legislations. In addition, nine Governments, including four
from the Pacific sub-region are in the process of enacting disability laws. Twenty-seven
Governments in all have enacted additional specific legislations and regulations. It is understood
that implementation of these laws is relatively more effective in countries that have put in place,
a) sound mechanism for the monitoring and redressal b) adequate budgetary provision for the
translation of statutory provisions and c) capacity building initiatives for better awareness of
rights and obligations. During the period of the Decade the preoccupation of the Governments
and NGOs in the enactment of special legislations on the one hand has afforded a sound legal
framework for the promotion and protection of rights of People with Disabilities but on the other
many new laws lacking disability perspective have created new barriers. Information and
Communication Technology (ICT) laws, policies and broadcasting acts are a classic example of
this trend. The whole region has witnessed an unprecedented growth and expansion of
information infrastructure but unfortunately, a majority of People with Disabilities are unable to
negotiate ICTs on account of inflexible design and high cost. The modern instruments of
communication and information processing presuppose the user‟s ability to see, hear, and use
hands. As a result, persons with visual impairment, print disabilities, and those having limitation
of motor skills generally cannot use computers and related systems. Consequently, tremendous
amount of additional resources are being channelized in R&D projects to provide a design
solution for making ICTs accessible and affordable to People with Disabilities. “ICT, of course,
is an enabling technology and if not properly planned, designed and delivered could widen the
knowledge and digital gap and would further raise the cost”. It is pertinent to recognize that the
„digital divide‟ is not merely on account of technology switchover but is largely due to lack of
disability perspective in the ICT laws, regulations and in the design of ICT products and
services. However, in the absence of a formal arrangement for review of all existing and new
laws, such problems will continue to persist. Disability rights are not so much about special laws
and entitlements as it is about the equal and effective enjoyment of whole range of citizenship
rights. Therefore, review of substantive laws, Civil and Criminal Procedures including Evidence
Acts is of paramount importance for affording equal rights and equality before law to People
with Disabilities. A permanent mechanism within the ministry of law, justice or equivalent
bodies for the review of existing laws and the new laws may augur well in creating a disability
inclusive legal framework.




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Self-help Organizations
Disability, by and large, has been regarded as a welfare issue and a subject matter of special
rights and entitlements. However, the debate on development and human rights is gradually
gaining momentum both in the disability movement as well at the UN level. “By focusing on the
person as subject the human rights model places the person centre stage in all decisions
affecting him/her” (Quinn & Degener, 2002). Since sustainable development cannot be achieved
without the active involvement of people in the process of solving problems common to their
group, many efforts have been made to ensure representation of the organizations of persons
with disabilities in the decision-making processes by national and international agencies. Rule
18 of the Standard Rules draws attention to the important role that disability organizations play
in the development of disability policy. The Decade Agenda too has emphasized the
strengthening of self-help movement of People with Disabilities in the Asian and Pacific region.
It is a widely accepted fact that persons with disabilities and their organizations are best
equipped to articulate their concerns that are vital to the reorganization of societal arrangements
and resources. The solidarity of People with Disabilities is gaining strength; today in about 24
countries in the region cross-disability organizations have been established. Another four
countries are striving to forge such alliances. This trend definitely indicates maturation of
disability-rights movement in the region. The affiliate organizations of the World Blind Union
and the World Federation of the Deaf have a strong presence in most of the countries of the
region. The national affiliates of these organizations usually maintain their single-disability
character and join umbrella organizations on a common minimum programme.

One can observe an increased involvement of self-help organizations in the provision of services,
more or less, on the lines of philanthropic NGOs. This trend poses many questions such as: a)
whether basic services like education, vocational training, rehabilitation etc. should be delivered
through an NGO mechanism or should the Government create necessary infrastructure for the
delivery of these services like it has done for the non-disabled citizens? b.) by their involvement
in the delivery of services do the NGOs advance the development or somewhat impede it? and
c.) what measures are required to enhance the capacity of self-help organizations to assume the
dual role of advocacy and service delivery? The advocacy organizations usually need
considerable time to keep pace with local, national and international developments. They have an
ongoing task of collection and dissemination of information and of consolidation of People with
Disabilities to their ranks. The rapidly changing world has new demands and expectations of the
self-help organizations. For example, the human rights institutions at the United Nations and
even at the national level have called upon disability NGOs to report human rights violations and
present shadow reports to the treaty monitoring bodies for advancing the rights of People with
Disabilities. Similarly, town planners, architects, automation engineers, ICT developers, tour
operators and media organizations are eager to gain a disability-perspective to avoid exclusion.
Involvement of disability organizations in the delivery of services needs to be examined in the
light of these ground realities. Perhaps capacity building of self-help organizations is of critical
importance for them to adequately respond to the new challenges.




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Multiple Dimensions
For far too long disability has been considered a unidimensional phenomenon requiring
intervention by specialized agencies. This understanding fails to recognize other determinants
that simultaneously operate and compound disability such as gender, age, economic status and
geographic location. Consequently, women, children, elderly persons, economically backward
and PWDs from rural and challenging topographies have a disproportionate share in the recent
developments. The National Coordination Committee is a mechanism that has brought about a
change, at least at the level of policy planning. This multi-sectoral arrangement has the potential
to effectively intervene in dealing with the multitude of factors that compound the challenge of
disability. Disability-oriented schemes today are not uncommon in the area of rural
development, women‟s empowerment, child development and urban planning.

The multi-sectoral planning and coordination is not only relevant in the context of national and
provincial planning but is equally relevant for the planning of a well coordinated agenda at the
grassroots level. The development of rural areas and poor people will depend much on the
action on ground at the village level. The lessons learnt from the experiments in macro-planning
can be safely applied to micro-planning. Within the divisions and departments of large
ministries like health, human resources, a disability-inclusive coordination mechanism is
desirable. This can ensure integration of People with Disabilities in all the programmes, schemes
and other administrative arrangements. The disability organizations can provide relevant inputs
to the in-house coordination established by large ministries and in the rural areas. Most
importantly, a multi-sectoral collaboration model can be innovatively applied in the planning of a
national plan of barrier-free infrastructure. Such a plan could be inclusive of information,
telecommunication, broadcasting and transport environments in addition to town and building
planning. Multi-sectoral thematic planning is the need of the hour, which can accelerate the
process of building a society-for-all at a much lower cost.


Minimum standards
The Decade has facilitated standardization in the area of built environments. Certain countries
have made some headway in developing minimum standards for the assistive devices and in the
training of professionals. However, much remains to be done in ensuring minimum acceptable
standards in the working of institutions imparting education, vocational training, and
rehabilitation. Most often, the selection of staff, criteria of remuneration, administrative
procedures and admission procedures are arbitrary and with no system of accountability to the
public, consumers or any authority. These conditions breed exploitation and are in violation of
the human rights of People with Disabilities. A large number of voluntary organizations under
the garb of income generation for self-sustainability engage the People with Disabilities for years
together in production activities by paying them a small stipend. The overall working conditions
in these vocational-cum-production centres are also far below stipulated standards. The
Governments in the region may undertake investigation of the working of all such institutions
and simultaneously develop standards to ensure minimum quality of services. Transparency in
the working of these organizations could be ensured by a system of accountability and regular
monitoring by a duly appointed authority.




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Regional cooperation
The model of regional cooperation that has been established during the period of 1993 -2002 in
the Asian and Pacific region has matured to an extent that it can enter into new agreements of
mutual interest. A trade agreement amongst the countries of the region can: a) generate market
interest in assistive technologies b.) reduce the cost of devices and c.) minimize the bureaucratic
hurdles in the export of assistive technologies. Each government will have to make a small
sacrifice on their revenue for a much bigger gain by facilitating free flow of enabling technology
for barrier free participation of People with Disabilities. Similarly, a structural adjustment
programme at regional and national level could be elaborated upon with an aim to ensure that all
points of entry to the world of employment, education, social, cultural, political and information
are made accessible based on standards that are universal, acceptable and affordable by all,
including People with Disabilities.


Economics of Disability
The economic impact of disability has yet to be analysed in depth. However, some case studies
suggest that disability and poverty adversely perpetuate each other. Would prevention of
disability reduce cost or the reduction of poverty would prevent disability is an unsolved riddle,
not so much because of its complexity but more due to insufficient motivation to deal with both.
Year- by- year and day -by -day the numbers of the poor and disabled are increasing or at best
are static. Opportunities like the Asian and Pacific Decade have brought this issue in sharp focus.
However, the economics of disability has not been examined beyond the logic of poverty. Being
disabled means increased cost of living on account of treatment, assistive devices and due to
barrier-ridden environment. For example, to grant freedom of movement to a citizen with
disability, cost is incurred at three levels:

   1.     Government subsidizes the cost of travel generally for one and in certain cases for two
          persons, one disabled and the escort.
   2.     The People with Disabilities incur extra expenditure to buy one additional ticket for
          the escort.
   3.     The accompanying person with a People with Disabilities normally forgoes the wage
          for the day or ignores some other work that amounts to indirect or opportunity cost.

This illustrates how exclusion from or barriers to participation increase the cost of living with
serious consequences to the Government, People with Disabilities and their families. It is not
possible to avoid the treatment cost but it is very much possible to avoid the travel cost that a
People with Disabilities has to incur for receiving treatment away from their villages provided
the health infrastructure is geared up at the rural areas and transport systems are made barrier-
free. In the new millennium, the question of poverty must be an important agenda for exploring
endurable solutions. Piecemeal approach should be substituted by lasting and sustainable
strategies. Economists, development agencies, People with Disabilities and Governments should
be provided with a forum to work on a policy document backed by authentic data relevant to the
economics of disability. Such a document may provide valuable inputs for policy planning.

In conclusion, disability in the new millennium must be seen and dealt with from a human rights
stand point which respects variation and inherent dignity, autonomy, solidarity and rights of all



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human beings including those with disabilities. In order to consolidate the gains of the Decade
and for launching an era of human rights and development, the new millennium has already
unfolded its challenges and opportunities to create and inclusive society.




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