A/AC.265/2003/1
Issues and emerging trends related to the advancement of persons with disabilities : report of the Secretary-General
UN Document Symbol | A/AC.265/2003/1 |
---|---|
Convention | Convention on the Rights of Persons with Disabilities |
Document Type | Report of the Secretary-General |
Session | Non-Applicable |
Type | Document |
Description |
18 p., table |
Subjects | Persons with Disabilities, Disability, Equality, Equal Opportunity, Capacity Building, Affirmative Action Programmes, Environment |
Extracted Text
United Nations A/AC.265/2003/1
General Assembly Distr.: General
7 April 2003
Original: English
03-31192 (E) 130503
*0331192*
Ad Hoc Committee on a Comprehensive and Integral
International Convention on Protection and Promotion
of the Rights and Dignity of Persons with Disabilities
New York, 16-27 June 2003
Issues and emerging trends related to the advancement of
persons with disabilities
Report of the Secretary-General
Summary
The present report examines core issues and emerging trends in development
approaches to the advancement of persons with disabilities in a broad human rights
framework, and progress in furthering the goals of full participation and equality. A
principal change noted is the shift in emphasis from biomedical and social welfare
service approaches to persons with disabilities to the recognition of persons with
disabilities as agents and beneficiaries of development of the societies in which they
live. This was accompanied by the emergence of concern with environmental
variables, viz. social, economic, institutional and policy factors, which can contribute
to disability and thereby influence the participation of persons with disabilities in
social and economic life, rather than the specific events, such as accidents, birth
trauma, disease or genetic condition, or war that cause disability.
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Contents
Paragraphs Page
I. Reformulations of the concept of disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 3
A. Development approaches to the advancement of persons with disabilities 23 3
B. Accessible environments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 4
C. Reconsideration of vulnerability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 910 5
D. The new universe of disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1117 6
II. Collection and analysis of data and statistics on persons with disabilities . . . . . . . . 1822 8
III. Advances in technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2328 10
IV. Next practices: building national capacities for the equalization of opportunities
in the mainstream . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2932 12
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I. Reformulations of the concept of disability
1. Prior to the adoption of the World Programme of Action, the general approach
in policies and programmes was to associate disability with individuals. Action on
disability was event-based, and activities mainly involved medical treatment,
rehabilitation and social welfare services to enable the person with a disability to fit
better into so-called normal societal structures. A related concern was prevention of
specific causes of disability; little attention was directed to ways in which policies
and institutions might create obstacles to full and effective participation of persons
with disabilities as development agents and beneficiaries.1 The goals of the World
Programme of Action full participation and equality reflect recognition by the
international community of the development approach to the advancement of
persons with disabilities in a broad human rights context. The equalization of
opportunities objective of the World Programme provides guidance for priority
actions to translate the two Programme goals into specific outcomes. Development
approaches to the advancement of persons with disabilities obtained added policy
attention as a result of the statement by President Vicente Fox of Mexico at the
general debate of the fifty-sixth session of the General Assembly. In his remarks
President Fox called upon the international community to prioritize the fight against
poverty and social exclusion. He observed that the world could not become more
just if certain groups are excluded from this process, and stated that Mexico was
proposing the establishment of a Special Committee to study the question of an
international convention on promoting and protecting the rights and dignity of
persons with disabilities.2
A. Development approaches to the advancement of persons
with disabilities
2. Reformulated concepts of disability direct special attention to the importance
of removing barriers and promoting accessible environments, so that people with a
disability are better able to participate, on the basis of equality, in social life and
development. Participants in a United Nations interregional expert meeting on
sustainable livelihoods and persons with disabilities, hosted by the Government of
the Republic of Indonesia at Jakarta (15-17 January 2002), identified three
categories of environmental barriers to the promotion and realization of sustainable
livelihoods by persons with disabilities: (a) adapting to a disabling condition and
maximizing functional capacity, (b) interacting with the community and with
society, and (c) gaining access to social and economic activities that give meaning
and purpose to life. Addressing these barriers would involve support for
rehabilitation strategies that maximize the functional (and social) capabilities of
people with disabilities; formulation of inclusion and empowerment strategies to
facilitate the full and effective participation of persons with disabilities in their
communities, societies and economies; and promotion of architecture, engineering
and design strategies that prevent or remove unnecessary barriers and handicapping
conditions in the infrastructure, which includes the built environment, transportation
systems, the workplace, and information technologies and communication systems.
3. Research studies suggest that there is no single formulation of the
developmental approach to disability. Some studies tend to view persons with
disabilities as a minority group, more because public attitudes make them the object
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of prejudice and discrimination than because of the existence of physical barriers to
their full and effective participation.3 The minority-group model considers all facets
of the environment to be influenced by public policy, since policies reflect societal
attitudes. Existing features of the physical, social and economic environment that
have a discriminatory impact on persons with disabilities cannot be viewed merely
as happenstance or coincidence.4 Action is required to address public attitudes that
allow and reinforce prejudice and discrimination in society. Other studies argue that
human rights approaches to disability are different from those that consider
environmental factors.5 The view is expressed that human rights approaches focus
on the rights to which all people, whether disabled or non-disabled, are entitled.
Human-rights approaches analyse how society marginalizes persons with
disabilities, and how the social environment could be changed and become more
inclusive.6 The common theme in development approaches is the prevention of
exclusion or abandonment to institutional settings and the promotion of
inclusion, self-determination and full participation and equality.
B. Accessible environments
4. Accessibility was identified in General Assembly resolution 52/82, of 12
December 1997, as a priority in furthering the equalization of opportunities for
persons with disabilities. The experience suggests that a focus on accessibility is an
effective approach to reversing exclusion and to enhancing equalization of
opportunities in a positive and sustainable way. The complexity of the issue requires
that the concept of access must be addressed in a systematic way, if it is to add value
to policy processes.
5. Access is not an act or a state but refers to freedom of choice in entering,
approaching, communicating with or making use of a situation.7 The environment is
either the large whole of or parts of the situation that is being accessed. Equal
participation would be available if equalization of opportunities to participate were
provided through measures that enhance accessibility. The elements of accessibility
are attributes of environmental availability but are not environmental characteristics.
For instance, in the field of health care, Professors Pechansky and Thomas define
access as a concept representing the degree of fit between the clients and the
system.8 Five characteristics of access to health care are identified: availability,
accessibility, accommodation, affordability and acceptability.9 Research in the field
of rehabilitation of persons with a disability has identified five environmental
characteristics:
(a) Accessibility can you get to where you want to go?
(b) Accommodation can you do what you want to do?
(c) Resource Availability are your special needs met?
(d) Social Support are you accepted by those around you?
(e) Equality are you treated equally with others?10
6. Accessibility characteristics identified dont so much provide a basis for
classifying or ranking environments as represent a scheme to classify the different
ways in which people interact with environments. Accessibility is only one of the
five characteristics of accessible environments identified.
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7. Universal design also provides a basis for assessing accessibility with
reference to interactions between people and the environment. Since the value
proposition of universal design is the design of products and environments to be
usable by all people, to the greatest extent possible,11 universal dimensions of access
should: (a) recognize the social context, (b) consider the situation of the whole
person, (c) take age and cultural factors into account and (d) support analyses in
terms of the individual and the environment. Building on the handicap classification
developed by the World Health Organization,12 an expert meeting organized by the
United Nations in cooperation with York University (Toronto, 17-19 June 2002)
considered several dimensions by which to assess access:
(a) Orientation (who) do you have information you wish?
(b) Independence (what) do you choose what you wish to do?
(c) Mobility (where) do you go where you wish?
(d) Occupation of Time (when) do you engage when you wish?
(e) Social Integration (with whom) are you accepted by others?
(f) Economic Self-Sufficiency (with what) do you have the resources you
need?
(g) Transition (change) are you prepared for change?13
8. One implication of environmental appraisals based on universal dimensions of
interactions between people and their environments is that they allow review and
assessment of accessibility variables and identification of options to reduce social
exclusion and ensure the rights for all. Accessibility is not the concern of a specific
social group but is an essential prerequisite for the advancement of all.
C. Reconsideration of vulnerability
9. There is a tendency for some outcome documents of international conferences
and summits to include persons with a disability among the set of vulnerable
population groups, as in the Plan of Implementation of the World Summit for
Sustainable Development (Johannesburg, 26 August-4 September 2002).14 This
usage reflects the minority-group model of disability and the perception that
limitation of physical, sensory, motor development abilities places people at risk.
However, vulnerability is not a topic considered in the World Programme of Action.
The data suggest that disability is a normal aspect of life; all kinds of disabilities can
happen to all types of people at all stages in their normal lifecycles.15 The task for
analysis is to reconsider vulnerability as a policy variable that affects all.
10. The Commission for Social Development at its thirty-sixth session (New York,
10-20 February 1998) considered vulnerability in the context of strategies to
promote social integration. The Commission noted that vulnerability affects all,
since all are exposed to a variety of risks but that risks are not evenly distributed
among the general population. The Commission also noted it was possible to
identify three dimensions of vulnerability: (a) risk dimension, or the probability of
information and communications technologiesimization; (b) state of mind
dimension; and (c) impact dimensions. In its agreed conclusions the Commission
noted that policies to address vulnerability, inter alia, need to be based on a proper
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understanding of the risk of poverty and social exclusion; should aim to strengthen
community-based networks and institutions of civil society; need to account for
territorial aspects of vulnerability, as between rural and urban areas; and need to
direct special attention to childhood education at all levels so that equal educational
opportunities at levels for persons with disabilities can be ensured.16 The
Commission expressed the view that a major determinant of vulnerable population
groups is the extent to which policies and programmes are inclusive, are supportive
of communities and families and ensure equal opportunities to programmes and
services for all. People with a disability are vulnerable if there is loss or limitation
of opportunities to take part in the normal life of the community on an equal level
owing to physical or social barriers.17
D. The new universe of disability
11. Both the World Programme of Action and the Standard Rules define persons
with a disability with reference to terminology developed by the World Health
Organization (WHO) in its International Classification of Impairments, Disabilities
and Handicaps (ICIDH). WHO-ICIDH is based on the health experience; its aim is
to describe the consequences of disease, injury or disorder at the level of specific
body function (biomedical status), of the person (body structures and functions) or
of society (impairment, disability and handicap).18 WHO-ICIDH implies a causal
link between impairment, disability and handicap unmediated by environmental
factors, which do in fact influence the incidence of disability in society.19
12. In contrast to the health experience-based WHO-ICIDH some analysts have
elaborated a life spheres approach to disability, which represents a shift in analytical
focus from physical, sensory or development abilities to opportunities in society. As
presented in the table below, the units of analysis are the person, family, society and
the larger environment. The analysis introduces life cycle changes rather than the
static analysis of WHO-ICIDH.
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Evolution of handicap from ability focus to access to life situation
Handicap category Ability of individual definitions Access to life situation
Orientation Receive and respond to
surrounding signals
Exchange of information
Physical independence Sustain existence without
aids or assistance
Choice
Mobility Move about effectively in
surroundings
Travel
Occupation Occupy time in a
customary manner
Actual use of time
Social integration Participate in customary
social relationships
Actual relationships
Economic self-sufficiency Sustain socio-economic
activity
Economic resource
control
Transition* Preparation for life
changes
Source for handicap categories and ability of individual definitions: World Health Organization,
International Classification of Impairments, Disabilities, and Handicaps: A Manual of
Classification relating to the Consequences of Disease (Geneva, World Health Organization,
1980).
*N.B. Transition is not an original WHO-ICIDH handicap category.
13. The shift in analytical focus from individual abilities to life situation
opportunities represents a shift in focus from a particular activity to the day-to-day
results for an individual operating in his or her environment. The key issue is access
by the individual to choice in decisions about their well-being and livelihoods
without recourse to aid or assistance. In this sense, economic self-sufficiency is not
viewed in terms of an individuals ability to earn income but in terms of the
capacities of the individual to influence and control economic resources.
Opportunity variables apply not solely to individuals. Disability policies and
programmes on the families of persons with disabilities influence the range of
choice that families have in terms of travel, use of time, social relationships and
control of economic resources. Policies and programmes can be examined in terms
of outcomes from the disability perspective and not with reference to specific
population groups.
14. A second component of the new universe of disability relates to transition,
particularly population ageing. This was discussed first in the third review and
appraisal of the World Programme of Action (A/52/351) and analysed in the
Madrid International Plan of Action on Ageing, which noted that the proportion of
the worlds population of persons aged 60 and over is expected to double between
2000 to 2050 from 10 to 21 per cent; in developing countries the proportion of older
persons is expected to increase from 8 to 19 per cent by 2050 (A/CONF.197/9,
Resolution 1, annex II). Transition and preparation for life changes as a result of a
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decline in some physical and sensory capacities is a recognized fact of ageing.
However, this is not a sufficient basis for including older persons among the set of
persons with disabilities. The policy issue is that as populations age, the percentage
of the population that experiences some degree of impairment but which is not
disabled will increase. An important planning issue is the formulation and
budgeting of options to promote accessible environments and opportunities to
acquire20 assistive devices.
15. The third component of the new universe of disability relates to the need to
address population groups that include persons with mental health issues and those
with active, acute conditions.21 For instance, the Special Rapporteur on Disability
has directed special attention to the situation of persons with developmental and
psychiatric disabilities in his second monitoring report (E/CN.5/2000/3 and Corr.1).
He noted that they are often among the most marginalized in the societies in which
they live; important tasks on behalf of this group include preparations for social
integration, as well as improvements in living conditions for those who require
institutional care.
16. Similar issues are encountered with regard to persons with active, acute
conditions, for instance those who suffer HIV/AIDS. Fighting acute disease requires
resources that might otherwise be available for implementing policies and
programmes on disability. Many people who are surviving with AIDS and other
acute diseases often need services required by people with traditional disabilities. In
some countries, national disability policy or law protects persons with an active,
acute condition. Countries that have yet to adopt policy guidance or legislation are
presented with the urgent task of formulating appropriate policy options on
protecting the rights and dignity of persons with acute, active conditions. However,
including persons with active, acute conditions among the set of persons with
disabilities highlights the link between disability and health status. Traditionally
disability advocates have sought to decouple disability and health issues, urging that
society reject the notion of people with disabilities as sick. There is a growing
body of evidence that suggests that persons with disabilities are at greater risk of
acquiring what have been termed secondary conditions. Formulation of options for
prevention of secondary conditions for persons with disabilities is an important goal
of public policy and introduces the urgent need to reconsider the conceptual bases
and terminology on disability.
17. One implication of the several dimensions of the new universe of disability is
the need to reconsider and update appropriately the estimate that one person in
ten in the population had a disability, contained in the World Programme of Action
(A/37/351/Add.1 and Add.1/Corr.1, para. 37) and many other policy and programme
documents to date.
II. Collection and analysis of data and statistics on persons
with disabilities
18. As discussed in the preceding section the United Nations Statistics Division
has made important contributions to implement recommendations of the World
Programme of Action on monitoring and evaluation (A/37/351/Add.1 and
Add.1/Corr.1, para. 198) as this relates to the development of disability statistics and
the collection of data related to disability.22 These activities have been guided at the
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international level by the work of the World Health Organization on disability
terminology, in particular the International Classification of Impairments,
Disabilities and Handicaps (ICIDH)23 and its recently adopted International
Classification of Functioning, Disability and Health (ICF).24 Results of the disability
statistics work of the United Nations was published as the Disability Statistics
Compendium of the United Nations (DISTAT),25 with recent additions and
improvements to the database being published on the Internet <
http://unstats.un.org/unsd/disability/>.
19. However, 20 years after adoption of the World Programme of Action, it still is
not possible to state with precision what percentage of the population is disabled.
The reason is that there remains observed variation in the disability data collected by
the United Nations, which is the result of different definitions, concepts and
methods used in countries. Analysts cannot draw comparisons about the nature and
extent of disability within or between countries or make social and economic
comparisons between disabled and non-disabled populations. Following the WHOICIDH
logic, the 1990 Compendium found countries collecting data on the basis of a
disability-approach or an impairment-approach. Countries using impairment
approaches would collect data on the blind, deaf or mute or both, and physical
disabilities, while those collecting data on the basis of disability approaches would
group data with reference to broad disability categories, such as mobility, agility,
seeing, hearing, speaking, other (limited abilities due to learning, emotional,
psychiatric or developmental delay).26 Other countries included information on
persons with mental disabilities as well as the sick following the disease and
event-based causal logic of WHO-ICIDH. Differences in the screening used to
obtain disability data have contributed to significant biases in estimates of disability
as a proportion of the total population, in gender studies, in comparisons of social
and economic characteristics, and in economic activity.27 Inadequacies in disability
data, whether stemming from definitional problems or from collection and
measurement problems, hamper efforts to place disability issues on mainstream
policy agendas at all institutional levels. Disability issues receive limited support
because disability experts and advocates are forced by inadequate or non-existent
data to participate in policy debates in which they are unable to describe accurately
the conditions differentiating disabled from non-disabled populations.28 Accurate
data are indispensable to the development of informed disability policies and
strategies capable of increasing social and economic opportunities for people with
disabilities.
20. International efforts are under way to address pressing problems in disability
data collection, viz. lack of agreed disability definitions and lack of uniform
disability data collection protocols. For instance, in connection with preparations for
the year 2000 round of population and housing censuses, the United Nations
prepared revised census recommendations29 that for the first time recommended
coverage of the topic of disability in national censuses and surveys. To measure the
disability dimension the United Nations recommended that a person with disability
should be defined as a person who is limited in the kind or amount of activities that
he or she can undertake because of ongoing difficulties that are due to a long-term
physical condition, mental condition or health problem; only disabilities lasting
more than six months should be included.30 Owing to the limited space available in a
census, the United Nations further recommended that a disability-oriented question
could be asked (as opposed to an impairment or handicap question).
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21. Most discussions on further development of disability statistics focus on
definitions derived from the impairment and disability variables of WHO-ICIDH. In
contrast, the new universe of disability would suggest the need to consider measures
of critical life areas for equalization of opportunities. These could include measures
with regard to whether persons with disabilities are empowered to make decisions
independently in their lives, have control over their use of time, have control over
economic resources and are prepared for major changes. Results in these areas often
determine whether outcome targets for equalization of opportunities will be
achieved. Because each individuals situation is unique and influenced by many
factors, such as age, culture or location, it is important to understand the particular
factors affecting each disabled person in his or her environment. If the interactive
nature of the concept is not assessed, then an understanding of the critical aspects of
barriers to reducing disadvantage may be lost.
22. Definitions related to handicap are an emerging area of methodological
concern, since they may be confused with the target areas for equal participation of
the Standard Rules. Some analysts have argued that there are two basic approaches
to the evaluation of handicap: (a) estimation of the gap between persons with and
without disabilities, and (b) estimation of specific reductions in life roles.31 As
discussed in the preceding section, environmental variables can influence both of
these dimensions and enhance or block achievement of the goals of the World
Programme of Action so all dimensions need to be considered when measuring
progress and obstacles in the advancement of persons with disabilities. Life sphere
dimensions, measured properly not as individual abilities but as the actual
circumstances in which people find themselves and which may place them at a
disadvantage can provide critical measures for the design of policies and
programmes that target specific life areas that will have the greatest impact on
equalization of opportunities.
III. Advances in technologies
23. Progress reports of the Secretary-General on implementation of the World
Programme of Action submitted to the fifty-fourth (A/54/388 and Add.1) and fiftysixth
(A/56/169 and Corr.1) sessions of the General Assembly drew special attention
to the role of technological advances and the promotion of accessible environments
for all. The reports noted the policy guidance provided by rule 5 of the Standard
Rules on accessibility in both the physical environment and information and
communication technologies. The reports also presented a value proposition for
promotion of accessible environments, viz. best total solutions for action on
environmental accessibility by, for and with persons with disabilities
(A/54/388/Add.1, para. 2).
24. Environmental accessibility affects all. Its emergence as a major concern
reflects the shift in emphasis from medical models of disability, and their emphasis
on care, protection and assisting persons with disabilities to adapt to normal social
structures, to social and development models, with their focus on empowerment,
participation and modifications of environments to promote equalization of
opportunities for all. Technological advances in the physical environment are
reflected in the expanded range of materials that promote accessibility for all in
terms of ease of use, durability and ergometric design. Equally important
contributions were made by countries that published on the Internet guidelines for
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the planning and design of accessible environments in order to promote public
awareness and train national personnel; this included Lebanon (for Beirut)
http://www.un.org/esa/socdev/enable/designm/, Malta http://www.knpd.org/
sxsguidelines/xsgl.htm and Peru http://www.un.org/esa/socdev/enable/guiadd/.32
25. The rapid pace of development in information and communications
technologies has significant social and economic implications for countries; it can
also influence the participation of persons with disabilities in social life and
development on the basis of equality. The role of information and communications
technologies in the context of the development of a knowledge-based global
economy in the twenty-first century was the topic of the high-level segment of the
substantive session of 2000 of the Economic and Social Council, which adopted a
ministerial declaration on the role of information technology and development.33
The Declaration noted that bridging the digital divide, creating opportunities to
access information, and developing knowledge-based economies is largely
determined, inter alia, by education, national capacities to generate and use
knowledge, information connectivity and content, and policy and legal/regulatory
frameworks. The Declaration makes several references to the digital divide and
the importance of access to such technology to achieve social and economic goals,
but it makes no reference to the situation of persons with disabilities nor does it
provide normative or substantive guidance on policy options to promote accessible
information and communications technologies for all.
26. Recent national experiences suggest two points are important in the design of
disability-sensitive policy options related to accessible information and
communications technologies: first, access to such technologies is not the same as
accessible information and communications technologies for all; second, the term
digital divide refers to the continuum of digital connection capabilities in
countries and not to a particular state prevailing among countries. Access to
information and communications technologies mainly concerns hardware and
telecommunications infrastructure, while accessibility refers to the design
parameters and capacities of such technologies to accommodate the needs,
preferences and special abilities of each user. Accessibility is concerned with the
environmental setting for information and communications technologies, which
includes the policy and legal frameworks, relative level of development,
institutional arrangements and national capacities to plan and manage such
technologies and to produce content, and the state of information and
communications technologies infrastructure and associated technologies.
27. Accessibility is a priority concern identified by the first session of the Ad Hoc
Committee on a Comprehensive and Integral International Convention on Protection
and Promotion of the Rights and Dignity of Persons with Disabilities (New York, 29
July to 9 August 2002), established pursuant to General Assembly resolution
56/168. In the resolution submitted by the Ad Hoc Committee for adoption by the
fifty-seventh session of the General Assembly on its future work, the Committee
directs special attention to the role of accessible information and communications
technologies and strongly recommends the Secretary-General to implement some
measures
to facilitate accessibility to United Nations premises, technology and
documents. The Committee invited, among others, persons with disabilities and
experts, to present proposals.34
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28. In his progress report to the fifty-sixth session of the General Assembly, the
Secretary-General cited advances in medical research as an emerging issue to be
considered in his fourth review and appraisal of the World Programme of Action.
Advances in medical research, genetics and biotechnology, in particular, have
important implications for disability, privacy, ethics and human rights. Progress in
genetic research, beginning with the description of the structure of DNA
(deoxyribonucleic acid) nearly 50 years ago and recent developments in the Human
Genome Project35 has resulted in improved understanding of the genetic bases of
many diseases. This new genetic knowledge has many applications in health care,
ranging from testing and early detection of susceptibility to diseases, evaluating
drug responses, to possible cures to diseases (gene therapy). Some are of the view
that the benefits of genetic knowledge, coupled with reduced costs for genetic
screening and testing, have been exaggerated and present social and ethical
challenges. Inclusion International, a non-governmental organization advocating on
behalf of people with intellectual disabilities, has argued that genetic research can be
beneficial but that it can also undermine human rights, especially for people with
disabilities.36 Advances in biotechnology, such as stem-cell therapy, reproductive
cloning and chromosomal manipulation, are technologies of great potential, but they
also raise complex ethical and biomedical issues, which can outpace current
legislative and policy frameworks.37 Some analysts have identified a set of
principles that they believe ought to guide further work in the fields of genetic
research and biomedicine: justice, non-discrimination, diversity, and autonomy with
informed decisions. The principle of justice holds that every person has the right to
develop according to his or her potential. The principle of non-discrimination holds
that everyone has the right to respect for who he or she is and to live as an equal
citizen. The principle of diversity promotes making the world available to all and
not only to those defined by notions of perfection and normality. The principle of
autonomy affirms that people have a right to be independent and to make their own
decisions.38
IV. Next practices: building national capacities for the
equalization of opportunities in the mainstream
29. Capacity-building for the equalization of opportunities obtains support from
the United Nations system within a narrow range of sectoral concerns, mainly social
welfare and services, functional rehabilitation and social protection. Capacitybuilding
in the field of disability gained added attention as a result of findings
presented in the first monitoring report of the Special Rapporteur on Disability
(A/52/56, annex), who observed that he had found limited efforts during his first
mandate (1994-1997) to integrate disability measures into ... mainstream
activities. He noted:
There is a great risk that disability measures once again will be left out or
marginalized in those development programmes launched in response to the
[major] United Nations [conferences and summits] follow-up. ... It would, for
instance, be extremely discouraging if programmes for poverty eradication
were to be launched without measures to support persons with disabilities. To
strengthen and integrate disability measures into the mainstream of technical
cooperation, including UNDP [United Nations Development Programme], the
World Bank and other financial institutions, is one of the most urgent measures
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of all in the future implementation of the Standard Rules. (A/52/56, annex,
para. 135).
30. Efforts to address capacity-building for equalization of opportunities have
mainly proceeded with the support of special funds, such as United Nations
Voluntary Fund on Disability, whose exiguous resources have been augmented on a
project-specific basis by the intergovernmental Arab Gulf Programme for United
Nations Development Organizations (AGFUND).39 This was discussed in the report
of the Secretary-General to the fifty-fourth session of the General Assembly on the
implementation of the World Programme of Action (A/54/388/Add.1), in which he
described support to catalytic and innovative action to implement the capacitybuilding
guidance contained in General Assembly resolution 52/82 (para. 8) as a
mainstream issue and implications for the equalization of opportunities in the
priority areas of accessibility, social services and safety nets, and employment and
sustainable livelihoods. The report noted that the capacity-building strategy was
characterized by (a) its focus on constituency-driven initiatives, in cooperation with
Governments, that address a particular disability issue in a catalytic and innovative
way; (b) its cooperation with project agents to formulate and implement time-bound,
operational proposals for action in line with priorities identified to further equalize
opportunities; and (c) its documentation of lessons learned (and obstacles
encountered) for study by other interested parties, and their publication on the global
Internet to facilitate access by all. The report identified three lessons of Voluntary
Fund support for disability-sensitive capacity-building in the mainstream: (a) the
essential role of concise, strategic policy guidance by Governments on priorities and
means of execution for national capacity-building, (b) the critical contribution of
partnerships at all levels to facilitate consultation, coordination and execution, and
(c) the need for rapid and appropriate responses in terms of technical and financial
assistance, on a small-scale, to facilitate quick disbursement as venture grants.40 The
experience of the Voluntary Fund suggests that disability-sensitive policies provide
an essential enabling framework for sustainable development for all. Mainstream
investments in building national capacities and institutions of civil society for the
equalization of opportunities and for environmental accessibility form part of what
might be characterized next practices in technical cooperation by the United
Nations system, which are central to achieving the aim, identified in General
Assembly resolution 48/99, of 20 December 1993, of achieving a society for all
by 2010.
31. Policy guidance on technical cooperation activities and persons with
disabilities is provided by the World Programme of Action concerning Disabled
Persons. Technical cooperation is one of the international activities identified in the
World Programme to further its goals of the full participation of persons with
disabilities in social life and development and equality.41 Technical and economic
cooperation are also among the set of implementation measures presented in the
Standard Rules, viz. Rule 21 (Technical and economic cooperation).42 The initiative
of Mexico at the fifty-sixth session of the General Assembly concerning a
comprehensive and integral convention on the rights of persons with disabilities in
the context of development provides added emphasis to the policy basis for
capacity-building for the equalization of opportunities as a mainstream development
cooperation issue, for instance in both triennial policy reviews of operational
activities for development considered by the General Assembly43 and the
programming guidelines of United Nations funds and programmes. Persons with
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disabilities are not currently a topic elaborated in the procedures for formulating the
United Nations Development Assistance Framework (UNDAF) or the common
country assessment (CCA), which necessarily affects resource allocations to build
national capacities for the equalization of opportunities.
32. Technical cooperation activities are components of larger development efforts
designed and implemented by Governments in accordance with national policies and
priorities. Technical cooperation produces, by definition, an intermediate product
whose aims include strengthened and improved national capacities and institutions
for self-reliant development. The test of a technical cooperation activity is the extent
to which there is effective and sustained follow-up, as well as replication to other
areas, sectors and constituencies on the basis of equality. Reinforcing the disability
perspective in mainstream technical cooperation will require action at several levels:
policy-level decisions on the part of Governments; procedural decisions on
harmonization and simplification by concerned members of the United Nations
system; and the provision of opportunities for full and effective participation by
persons with disabilities as development agents and beneficiaries. A strategic
framework to reinforce the disability perspective in mainstream technical
cooperation activities would include the following considerations:
(a) Policy aspects. Objectives identified to further the disability dimension
in technical cooperation must be linked clearly with national development objectives
and priorities, including the outcomes of major United Nations conferences and
summits. Objectives formulated with specific reference to persons with disabilities
should be presented as integral and not as an adjunct to overall development
concerns and purposes. The objective statement should address the question of the
resource implications of objectives targeted to a specific social group, as opposed to
the benefits of mainstream approaches. Since sustainable technical cooperation
follow-up and replication require an unambiguous commitment on the part of
Governments, the objective statement must be consistent and supportive of
mainstream national development policies and priorities;
(b) Participation. Full participation and equality are the goals adopted by the
international community for the World Programme of Action concerning Disabled
Persons. Participation of persons with disabilities in decisions that affect their
livelihoods and well-being is an integral part of a broad human rights framework for
development. Participation in this sense pertains to involvement in developmental
decision-making, contributing to developmental efforts and equal sharing in the
results of development. Major United Nations conferences and summits have
addressed the situation of persons with disabilities with reference to a range of
substantive concerns and not solely as issues specifically related to disability. As a
result of the initiative of Mexico at the fifty-sixth session of the General Assembly
concerning a comprehensive and integral convention on the rights of persons with
disabilities the human rights of persons with disabilities is now recognized as an
essential prerequisite for advancing the rights of all;
(c) Institutions. Successful technical cooperation requires effective multilevel
institutional mechanisms to plan, organize and deliver technical cooperation
inputs and to receive these inputs and put them to use by, for and with the intended
beneficiaries. Since technical cooperation often involves the introduction of new
concepts, methods, technologies and procedures to an existing development setting,
it is important that local organizations, including organizations of persons with
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disabilities, be involved in all aspects of planning, design and implementation of
technical cooperation activities and their follow-up. Such involvement builds
stakeholders and serves to ensure that technical cooperation activities are consistent
with local needs, socio-cultural conditions, and technical, managerial and financial
capacities prevailing;
(d) Resources. While the local level can make important resource
contributions to technical cooperation activities, it should be recognized that the
majority of persons with disabilities in developing countries and countries with
economies in transition are poor and reside mainly in rural areas. Since many
persons with disabilities may have limited capacities to contribute either material or
in kind resources to technical cooperation activities, technical cooperation policies
and plans need to include explicit consideration of both the income and employment
implications for intended beneficiaries and the apportionment of the costs involved
in project implementation and follow-up;
(e) Capacity-building. For mainstream technical cooperation to contribute to
enhanced participation, on the basis of equality, of persons with disabilities as
development agents and beneficiaries, there is a need for systematic capacitybuilding
and institutional development among (1) staff of the technical cooperation
programmes and agencies concerned (planning and management level), (2) staff at
the field (implementation) level, and (3) persons with disabilities (beneficiary level);
(f) Monitoring and evaluation. Monitoring and evaluation of operational
activities for development is a major concern of the United Nations system,
particularly as this pertains to the simplification and harmonization of procedures
and to ensuring more effective and rapid dissemination of monitoring and evaluation
findings to improve performance and strengthen national capacities.44 One factor
that may enhance monitoring and evaluation procedures would be the introduction
of disability-sensitive decision points in an early revision of the United Nations
Development Assistance Framework process. Reinforcing the disability dimension
in mainstream technical cooperation would involve at least three issues in ex-post
evaluations: (1) how were persons with disabilities involved in decisions on the
planning, design and execution of mainstream technical cooperation activities;
(2) what benefits have persons with disabilities achieved from technical cooperation;
how were these distributed, and what were the costs associated with the activities
and by whom were these borne; and what are the project outcomes from the
disability perspective; (3) has there been project follow-up; and, if so, who was
involved in this decision and has the project experience been generalized to a wider
range of development constituencies, sectors or geographical areas.
Notes
1 Rodrigo Jiménez Sandoval, Eliminando Barreras, Construyendo Oportunidades (Naciones
Unidas, ILANUD, San José, Costa Rica, 1997).
2 A/56/PV.44.
3 See Hahn, Harlan, The political implications of disability definitions and data, Disability
Policy Studies, vol. 4, No. 2.
4 Ibid.
5 Rioux, Marcia H., Disability: the place of judgement in a world of fact, Journal of Intellectual
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Disability Research, vol. 41, No. 2).
6 Oliver, Michael, Changing the social relations of research production, Disability, Handicap
and Society, vol. 7, No. 2.
7 Brown, Scott Campbell, Methodological paradigms that shape disability research, in Gary L.
Albrecht, Katharine D. Seelman and Michael Bury, eds., Handbook of Disability Studies
(Thousand Oaks, Sage Publications, 2001).
8 Pechansky, R., and C. Thomas, The concept of access: definition and relation to customer
satisfaction, Medical Care, vol. 19, No. 2.
9 Ibid.
10 Whiteneck, Gale G., Patrick Fougeyrollas and Kenneth A. Gerhart, Elaborating the model of
disablement, in Marcus J. Fuher, ed., Assessing Medical Rehabilitation Practices: the Promise
of Outcomes Research (Baltimore, Paul H. Brookes Publishing, 1997).
11 Ron Mace http://www.design.ncsu.edu/cud/univ_design/ud.htm.
12 World Health Organization, International Classification of Impairments, Disabilities and
Handicaps (Geneva, 1980).
13 Report of a consultative expert meeting on critical issues and trends related to disability and
human rights: emerging issues and concepts, York University, Toronto, 17-19 June 2002.
14 Ibid., para. 46.
15 Robert L. Metts, Planning for disability; paper presented at a panel discussion on independent
living of persons with disabilities, United Nations, 3 December 1998.
16 Official Records of the Economic and Social Council, 1998, Supplement No. 6 (E/1998/26),
chap. I, paras. 38-63.
17 Proceedings of the First World Conference of Disabled Peoples International, Singapore,
30 November-4 December 1981.
18 United Nations Guidelines and principles for the development of disability statistics (2001).
19 The ICIDH causal model also fails to capture the fact that handicap can lead to the creation of
disability as well as impairment.
20 Acquire follows the usage of Professor Amartya Sen in his analysis of entitlements and
capabilities. Professor Sen has argued that Ultimately, the process of economic development
has to be concerned with what people can or cannot do, e.g. whether they can
read, write and
communicate, take part in literary and scientific pursuits. He continues, A major failing of
traditional
economics has been its tendency to concentrate on supply of goods rather than on
ownership and entitlement. Entitlement in this sense refer to the set of alternative commodity
bundles that a person can command in a society using the totality of rights and opportunities
that he or she faces. On the basis of entitlement, a person can acquire some capabilities, i.e.,
the ability to do this or that (e.g., be well nourished), and fail to acquire some other
capabilities. See, Amartya Sen, Development: which way now?, The Economic Journal, vol.
93 (1983). The focus of the developmental approach thus becomes expansion of entitlements for
all.
21 Seelman, Katherine D. Change and challenge: the integration of the new paradigm of disability
into research and practice, a vision for the 21st century: population, health care, technology and
employment, paper presented to the National Council on Rehabilitation education conference
(Vancouver, 8 March 1998).
22 Notable work has been carried out by, inter alia, the ILO on employment statistics and
indicators, UNESCO on educational statistics and indicators, WHO on health-related statistics
and indicators, and UNICEF on statistics on the children and child survival; the regional
commissions of the United Nations have major statistical programmes as well.
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23 ICIDH, op. cit.
24 ICF, op. cit.
25 Statistics on Special Population Groups (United Nations publication, Sales No. E.90.XVII.17).
26 The United Nations Statistics Division also found that disability approaches lead to higher rates
of disability in a population than do impairment approaches. A single question assessing
functional limitations associated with a disability typically embraces behaviour associated with
a broad range of impairment conditions. For instance, a question about difficulty climbing
stairs may be due to several impairment conditions. In contrast, impairment approaches
generally use more direct questions that relate to specific conditions; for instance, a question
about hearing loss can determine whether loss is profound and affects one or both ears.
27 The United Nations Statistics Division has drawn attention to the need to standardize methods
of calculating disability rates; for instance, the crude disability rate of impairment should by
definition include all disabled persons for the total population in the numerator, and the
denominator should include the number of the total population; age-specific disability rates need
to maintain standard and comparable age ranges for numerators and denominators.
28 Metts, Robert L., An overview of future research in disability and development, unpublished
paper (2002).
29 Principles and Recommendations for Population and Housing Censuses, Revision 1 (United
Nations publication, Sales No. E.98.XVII.8).
30 Ibid., para. 2.262.
31 Chamie, Mary. 1992, A perspective for considering the classification of handicap,
unpublished paper (1992); and Scott Campbell Brown, Revitalizing handicap for disability
research, Journal of Disability Studies, vol. 4, No. 2.
32 In connection with the Asian and Pacific Decade of Disabled Persons (1993-2002) goal of
promoting accessible environments for all, the Economic and Social Commission for Asia and
the Pacific (ESCAP) undertook, with financial and technical support of the Government of
Japan (the Ministry of Construction, in particular) a regional project on the promotion of nonhandicapping
environments for disabled and elderly persons. ESCAP published guidelines
(ST/ESCAP/1492) and case studies (ST/ESCAP/1510) of selected national experience in
promoting non-handicapping physical environments. ESCAP organized training workshops at
Beijing and New Delhi and field-tested trainer guidelines at Bangalore (India), Pattaya
(Thailand) and Penang (Malaysia).
33 Economic and Social Council document E/2000/L.9.
34 A/57/357, para. 16.
35 Human Genome Project Information (http://www.ornl.gov/hgmis/).
36 International League of Societies for Persons with Mental Handicaps, Just Technology? From
principles to practice in bio-ethical issues (Toronto, Roeher Institute, 1994).
37 Kass, Leon R., Life, Liberty and the Defense of Dignity (San Francisco, Encounter Books,
2002).
38 Avard, Denise, New genetics, unpublished paper (2002).
39 (http://www.agfund.org/).
40 United Nations document A/54/388/Add.1, Disability-sensitive development cooperation in the
twenty-first century: partnerships and venture grants.
41 United Nations document A/37/351/Add.1 and Add.1/Corr.1.
42 General Assembly resolution 48/96 of 20 December 1993, annex, rule 21.
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43 General Assembly resolution 56/201 of 21 December 2001, Triennial policy review of
operational activities for development of the United Nations system, directs special attention to
globalization, humanitarian assistance and gender, and to funding operational activities for
development and simplification and harmonization of procedures.
44 See E/2000/46/Add.1, paras. 128-132.