The beginnings of a Framework For Policies
to Promote Sustainable Livelihoods
for People with Disabilities
By
Robert L. Metts, Ph.D.
Department of Economics, University of Nevada, Reno
Disability Policy and Planning Institute, Berkeley California
On behalf of the participating experts, I first wish to thank the Ministry of Social
Affairs of the Republic of Indonesia for graciously hosting this important Interregional
Consultative Experts Meeting on Disability Sensitive Policy Design and Evaluation for
Sustainable Livelihoods for all in the Twenty-First Century. It is certainly a
pleasure to be invited to your beautiful country. I would also like to express my
gratitude to the United Nations Division for Social Policy and Development and the Jakarta
Field Office of the United Nations Development Program for serving as implementing
agents. I am also sure that I speak on behalf of all of the participating experts in
offering my sincere thanks to the Institute for Social Development Studies, and most
particularly Dr. Sudibyo Markus, for their hard work and patience in successfully bringing
us all together on such very short notice.
Our primary purpose here is to develop recommendations to assist policymakers in the
design and implementation of appropriate and cost-effective policies and strategies to
promote sustainable livelihoods for people with disabilities. Unfortunately for this
exercise, disability issues tend to be rather complicated. The term disability
comprises such a wide variety of conditions, with each condition capable of producing such
varied outcomes depending on the social and environmental contexts in which they occur,
that disability scholars and advocates have yet to even agree upon a consistent set of
disability definitions. Consequently, I would not be at all surprised if some of
you, like me, may have found it difficult to know where to begin.
In order to get us started, therefore, I have attempted in this paper to begin the
daunting task of boiling this complex topic down to a framework that might be useful in
developing our recommendations. It is my sincere desire that, after discussing this
framework and modifying it where necessary, we can use it to develop a useful and
informative set of recommendations.
Lack of Knowledge, The Heart of the Disability Policy Problem
Disabilities occur in all populations in all regions and countries. Either
permanent or transitory in nature, they occur in all types of people at all points in
their life cycles. Temporary and lifelong disabilities regularly occur as early as
conception. They can even be predetermined long before conception through the
genetics, behaviors and environmental circumstances of the parents. After they are
born, all humans then face a wide variety of disabling possibilities throughout their
lives. Disabilities, therefore, should be conceptualized as normal phenomena with
systematic probabilities of occurrence.
Despite this fact, mainstream society tends to view disabled people as a separate, and
often inferior, class of human beings. Most people seem to be unaware of the fact
that they and their family members can become disabled at any time. Unfortunately,
most policymakers are similarly unaware of their own susceptibility to disability and,
therefore, fail to take disabilities into proper account when designing and implementing
public policy. Consequently, the world’s physical and social infrastructures
have long contained countless unnecessary access barriers that severely restrict the
activities of people with disabilities.
Sadly, policymakers responsible for the world’s institutional responses to
disability also tend to share society’s negative perceptions of people with
disabilities, and also fail to fully understand their own chances of becoming
disabled. As a result, in addition to inhospitable physical and social environments,
millions of disabled people are also forced to function within socially isolating and
demeaning institutional systems that would never have been created if people in mainstream
society realized that they might have to use them. In areas where these expensive
rehabilitation, vocational training and custodial care systems cannot be economically
supported by the state, charities have traditionally attempted to fill the gaps with what
are usually clones of the state sponsored systems. Perhaps fortunately, due to the
high costs of the institutions on which they are based, many of the charitable efforts
tend to be undercapitalized and too small-scale to impact the lives of significant numbers
of disabled people.
The Evolution Toward a Solution
In spite of society’s longstanding tendency to respond inappropriately to
disability, advances in medicine in the last half-century have worked together with
advances in rehabilitation to increase the life spans and the quality of the lives of
people with disabilities. This has in turn caused the world’s disabled
population to increase in size and in social and economic potential.
By the late 1960s (maybe earlier in some areas), disabled populations had gained
sufficient size and sophistication to successfully advocate on their own behalf. As
their concerns have expanded beyond survival and rehabilitation, the scope of disability
policy has necessarily expanded to include an ever widening array of technical and social
issues associated with increasing their productivity and further improving the quality of
their lives. This has expanded the conceptual framework of disability policy beyond
the issues associated with providing rehabilitation, social protection and custodial care
for disabled individuals, to include the much broader issues associated with reducing the
limitations imposed on disabled people by their physical, social and economic
environments. Thus, society’s responses to disability are shifting away
from segregated institutional systems of rehabilitation, social protection and custodial
care, toward strategies that reform these traditional elements of disability policy, and
employ their reformed versions in broader social and environmental strategies that include
measures to increase the accessibility of built environments and to remove and prevent
unnecessary social and economic barriers.
This evolution in thinking has both political and economic roots. Politically,
disabled populations are now growing large enough and sophisticated enough to effectively
advocate for their social and economic inclusion as a matter of basic human rights.
Meanwhile, from an economic perspective, the world’s traditional segregated systems
of rehabilitation and custodial-care are well into the process of proving to be
unnecessarily expensive due to the high costs of the institutions on which they are based,
and counterproductive due to their perverse tendency to prevent disabled people from
gaining social and economic access.[1]
Therefore, inclusionary policies and strategies are now being considered in their
place because of their potential to simultaneously increase the economic contributions of
people with disabilities, and reduce public expenditures on the expensive and increasingly
inappropriate traditional segregated systems of rehabilitation, vocational training and
custodial care.
The Mission of this Meeting on Sustainable Livelihoods
A global commitment is now in place to ensuring disabled people equal access to social
and economic opportunities. This commitment is expressed by the United Nations in,
among other things, the World Programme of Action Concerning Persons with Disabilities[2] and the Standard Rules on
the Equalization of Opportunities for Persons with Disabilities.[3] It has also been
expressed by most nations of the world in a variety of ways including policies,
constitutional provisions, legislation and regulations. This commitment has two
primary purposes:
- To affirm the basic human rights of people with disabilities to equal access to social
and economic opportunities and,
- To create environments in which people with disabilities can maximize their capacity for
making social and economic contributions.
Nations and international organizations are now attempting to develop policies and
strategies compatible and commensurate with this commitment. Unfortunately, this
process is taking place within the context of the aforementioned long history of negative
stereotypes about people with disabilities, and their associated inappropriate
institutional systems. Therefore, the resulting global disability environment tends
to be characterized by self-reinforcing combinations of social and economic
discrimination; inaccessible built environments; and expensive, socially isolating, and
counterproductive institutional systems. Furthermore, despite the recent advances in
thinking on disability issues, policymakers attempting to design and implement
inclusionary approaches to disability are doing so in a global setting characterized by
meager information, inadequate data and virtually no coordination of activities. The
result has been a thin ineffective global patchwork of disjointed and often contradictory
disability policies and strategies.
The mission of this meeting is to contribute to the solution of this problem by
developing a framework of recommendations that may be used by policymakers to begin to
develop cost-effective policies and strategies that successfully promote sustainable
livelihoods for disabled people.
The Proposed Framework
It is now recognized that, in addition to facing personal obstacles as a result of
their functional limitations, people with disabilities also face social and environmental
barriers to their social and economic participation. Therefore, to be successful,
strategies to promote sustainable livelihoods for people with disabilities must attempt to
address all of these obstacles and barriers simultaneously. This requires
coordinated and integrated policies and strategies that work in harmony to maximize the
functional capabilities of people with disabilities while simultaneously eliminating or
mitigating as many of the unnecessary social and environmental barriers as possible.
Such efforts must also take into account the fact that people can only make social and
economic contributions if they enjoy access to their families, communities and
societies. This involves passing through the following three distinct but
interrelated stages of physical and social integration:
- Adapting to the disabling condition and maximizing functional capacity;
- Interacting with the community and with society; and
- Gaining access to the types of social and economic activities that give life meaning and
purpose (e.g. contributing to one’s family and community, actively participating in
society and/or becoming productively employed).
In the first stage, a person with a disability is concerned with surviving the
disabling condition and beginning to recover. The types of institutional support
associated with this stage are primarily rehabilitative in nature and include medical
restoration, physical therapy, assistive technology, prosthetic devices and appliances,
personal assistance, information, advocacy and training in all of the activities
associated with surviving and beginning to overcome a disabling condition.
In the second stage, a person with a disability must address the needs associated with
becoming as self-reliant as possible, and with gaining social access. The types of
support associated with this stage are also rehabilitative and empowering in nature and
include occupational therapy; mobility training; assistive technology; and the provision
of access to housing, transportation, education, and recreation. Social and
institutional measures related to this stage include the removal and prevention of
architectural and design barriers and the removal of discriminatory practices, negative
stereotyping and other social barriers that restrict people with disabilities from fully
participating in their families, communities, and societies.
In the third and most advanced stage, a person with a disability is concerned with
gaining access to activities that give life meaning and purpose. For most people,
this translates into some combination of contributions to their families and communities,
productive employment, and active participation in society as a whole. The types of
institutional support associated with this stage fall most heavily in the inclusion and
empowerment categories, and include the provision of access to education, training and
recreation, and support for employment and social participation. Complementary
measures include social policies and strategies to reduce the types of discriminatory
practices that restrict the access of disabled people to all types of social and economic
opportunities; including education, training and gainful employment.
Promoting sustainable livelihoods for people with disabilities requires comprehensive
and integrated strategies that facilitate the passage of disabled people through all three
of the above stages. Piecemeal disability interventions are not very likely to be
cost-effective because their beneficial impacts cannot be fully realized unless their
beneficiaries are empowered to maximize their functional capabilities and gain access to
the fullest possible range of social and economic opportunities. Therefore,
strategies to promote sustainable livelihoods for people with disabilities should consist
of comprehensive and integrated combinations of:
- Rehabilitation strategies which maximize the functional capabilities of people with
disabilities;
- Inclusion and empowerment strategies which facilitate their active participation in
their communities, societies and economies; and
- Architecture and design strategies that remove and prevent unnecessary barriers in built
environments.
Successful and cost-effective disability strategies must also take into account the
fact that some people will incur disabilities so severe that they will be incapable of
successfully passing through all three of the stages of physical and social integration,
even within the context of the types of comprehensive approaches outlined above.
Members of this sub-group will require specialized support services throughout their lives
simply to survive. There will be others who will require various forms of lifetime
support (e.g. ongoing personal assistance services) to be consistently capable of making
social and economic contributions. Still others will require specialized support
services at various times in their lives (e.g. specialized training, rehabilitation and
modifications to homes and workplaces) to overcome specific obstacles. To be
cost-effective and commensurate with the global commitment to equalizing opportunities for
people with disabilities, these services must be,
- Designed to facilitate access to the social and economic mainstream;
- Provided in mainstream institutional settings wherever possible; and
- Provided within the context of the comprehensive inclusion and empowerment strategies
outlined above.
The Roles of Institutions
The primary institutions that must be brought into a successful global effort to
promote sustainable livelihoods for people with disabilities are:
- Local, regional and national governments,
- Multilateral and bilateral development organizations,
- Development NGOs,
- Charitable organizations,
- Local disability NGOs,
- National disability NGOs, and
- International disability NGOs.
- Commercial enterprises.
To meaningfully contribute to the development of local, national and international
inclusionary disability policies and strategies, these institutions will be required by
simple logic to adopt an integrated combination of; 1) policy commitments and
institutional mandates to include people with disabilities and a concern for their rights
and needs in all of their own activities, and 2) comprehensive strategies designed to
remove and prevent internal social and environmental barriers. Without such
commitments, an institution will be advocating for the inclusion of disabled people from a
weak, and arguably hypocritical, philosophical position.
The inclusionary agenda will also be most efficiently advanced if the participating
institutions adhere to the following fundamental principles:
- The adoption of inclusionary policies and practices.
- The removal and prevention of architectural and design barriers.
- The initiation of affirmative strategies to include people with disabilities in
mainstream political, vocational, educational and recreational activities.
- Support for, and constructive engagement with, organizations of people with
disabilities.
- Provision of cost-effective assistive technology.
Inclusionary policies and practices: Inclusionary policies and practices
are those that foster the inclusion of people with disabilities in all aspects of an
institution, community or society. At the institutional level such commitments are
expressed through mandates to recruit and employ people with disabilities and to design,
implement, and evaluate all policies, practices and activities in ways that take into
account the needs, rights, and concerns of people with disabilities.
Removal and prevention of architectural and design barriers: People with
disabilities face a multitude of unnecessary architectural and design barriers which
prevent them from achieving access to such vital aspects of society as public education,
public transportation and the physical infrastructure associated with mainstream
educational, political and civic activities. The removal of such barriers and the
prevention of new ones are critical elements of any successful inclusionary and empowering
disability strategy.
Affirmative strategies to include people with disabilities in mainstream political,
vocational, educational and recreational activities: People with disabilities
tend to be subjected to social and economic discrimination. The negative
consequences of such discrimination are particularly severe in poor countries where
resources are scarcest. Discrimination against people with disabilities results in
their being denied equal access to social and economic opportunities and benefits, and it
creates a self re-enforcing climate of low expectations and negative stereotypes
concerning people with disabilities that further limit their potential. These
handicaps can only be overcome through public education and affirmative actions aimed at
empowering people with disabilities and ensuring them a place in mainstream society.
Support for and constructive engagement with organizations of people with
disabilities: People with disabilities and their families are the most qualified and
best equipped to support, inform and advocate for other people with disabilities.
They are also the most qualified, best informed and most motivated to speak on their own
behalf concerning the proper design and implementation of strategies to allow them the
social and economic access they need to increase their contributions to their societies
and economies. Therefore, support for, and constructive engagement with,
organizations of people with disabilities are among the most cost-effective investments
available to nations and international organizations wishing to increase the social and
economic contributions of people with disabilities.
Provision of cost-effective assistive technology: Because disabilities
involve functional limitations, it is often difficult or impossible for people with
disabilities to interact with their communities and societies without special assistance
and/or assistive technology. Often, however, providing access for people with
disabilities to a mainstream technological innovation is more cost-effective than creating
a specialized technology. For example, e-mail has revolutionized the communicative
abilities of the hearing impaired at a fraction of the cost of the highly specialized
communication equipment previously developed for their use; and personal computers, the
Internet and e-mail have increased the social access of people with impaired verbal
capabilities in a similarly cost-effective way. Whether they be specially designed
to meet the needs of people with disabilities (e.g. Braille writers, prosthetic devices,
wheelchairs and hearing aids) or innovative adaptations of mainstream technological
innovations (e.g. e-mail, the Internet and personal computers), assistive technologies are
vital to the process of providing social and environmental access to many people with
disabilities.
The Long Term Implications of the Proposed Framework
The desired transformation from our present circumstances to a situation characterized
by inclusionary societies and accommodating architecture and design environments will not
be instantaneous. Environmental barriers and misguided societal perceptions take
time to change, and inappropriate institutional systems take even more time to dismantle
and transform.
This fact comes with certain implications concerning the evolution of the relationships
between investments in custodial care, investments in rehabilitation, and investments in
the removal of unnecessary social and environmental barriers. The most obvious of
these implications has to do with the pace at which access to social and economic
opportunities is increased for disabled people, and the resulting pace of their collective
transformation from economic burdens to economic assets.
Inasmuch as the current environment still contains many elements that severely restrict
the social and economic access of disabled people, more investments are currently required
in social protection and custodial care than will presumably be required in a more
accommodating future. It may be hypothesized, therefore, that, as access is
increased, the proportional investments in social protection and custodial care will fall
relative to investments in rehabilitation and inclusion. Also, assuming that there
are only a finite (albeit an extremely large) number of existing barriers to be removed, a
future reduction in real expenditures on barrier removal is also feasible.
In the future, therefore, societal expenditures on disability could ultimately comprise
a stable and manageable combination of; 1) expenditures to increase the functional
capabilities of people who experience disabilities; 2) expenditures to prevent the
occurrence of new social and economic barriers and 3) expenditures to care for people with
disabilities so severe that they cannot care for themselves. Therefore, a successful
effort to promote sustainable livelihoods for people with disabilities has it in its power
to result in a future in which; 1) real investments in disability are lower than they are
today, 2) the most severely disabled people are cost-effectively cared for with dignity
and; 3) all but the most severely disabled are efficiently assisted to enjoy the
self-esteem and quality of life associated with social and economic inclusion and
self-reliance.
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[1] S.L. Percy, Disability,
Civil Rights, and Public Policy (Tuscaloosa: The University of Alabama Press, 1989);
R.K. Scotch, From Good Will to Civil Rights (Philadelphia: Temple University Press,
1984); J.P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights
Movement (New York: Times Books, 1993); and Thornton and Lunt, Employment Policies
for Disabled People in Eighteen Countries, 298-301.
[2] United Nations, World
Program of Action Concerning People with Disabilities (New York, 1982).
[3] United Nations, The
Standard Rules on the Equalization of Opportunities for Persons with
Disabilities (New York, 1994).
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