PERSPECTIVES ON THE STATUS OF
PEOPLE WITH DISABILITIES INTERNATIONALLY
by Lex Frieden
June 30, 2003
INTRODUCTION
Estimates of the number of disabled people in the
world today vary in range from four percent to more than 15 percent. Even using the lowest estimates, it is
apparent that there are more than half a billion people with disabilities. More
than 80 percent of these people are from developing countries which have few
material resources and which offer few services, few supports, and virtually no
protection from abuse or discrimination. Even in rich countries where services
are abundant and where rights are established in law, people with disabilities
compose the largest subset of the population who are impoverished, and their
rights are seldom fully acknowledged and fully enforced. Disability advocates
and people with an interest in civil society should be alarmed by the realities
of disability worldwide
U.S. PERSPECTIVE
In the U.S., the Americans with Disabilities Act
represented at least part of our effort to address these issues in a
comprehensive framework. In concept, the ADA was based on our constitutional
commitment to equal opportunity and equal treatment for all. In practice, we
knew this constitutional commitment was insufficient to insure a realistic
outcome consistent with the philosophical basis. We knew this by our experience
as a nation with slavery, with women's suffrage, and with discrimination in
other forms. As people with disabilities, we also had a good pattern for
reconciling our constitutional commitments with current inconsistent realities.
This pattern is perhaps best evidenced by the civil rights movement of the
1960s.
In fact, the use of civil rights methods to achieve
equal rights goals, improve services, and raise statuses is threaded throughout
the history of our nation. Therefore, when we as people with disabilities, our
families, our friends, and certain political supporters realized in the early
1980s that passing law after law and starting program after program would never
address the underlying attitudinal, political, and economic resistance to
equality for people with disabilities, it was quite obvious to us that we
should follow the pattern of other minorities and women in an effort to achieve
broad‑based commitment to equality in modern terms. Doing so within a
framework of civil rights would provide us with mechanisms for enforcement that
could never be granted by a constitution.
To us, the conceptualization of the Americans with
Disabilities Act was quite natural and quite simple. In fact, our first
iteration of the legislative proposal for the ADA was only 12 pages long. It
stated that certain rights to access the built environment, public and private
programs and services, and employment were granted by law and therefore could
be enforced through government action or by civil action on the part of a
single individual or group. The ADA now provides the framework for a
substantive set of rules, regulations, and design standards which are mandatory
throughout the United States and which must be followed by both public and
private entities. By establishing our civil rights under modern law, we have
finally given life to our founders’ commitment to equality.
I can now ride on virtually any public conveyance in
the United States, I can enter virtually any public or private building, and I
can compete on a fair basis for virtually any job that I am qualified to
perform. Furthermore, if I am frustrated by what I regard as unreasonable or
unjustified barriers to entry into facilities, participation in programs,
access to services, or employment, I have the right to lodge a formal complaint
or to have my complaint heard in court by a jury of my peers. I know this is
not likely to become a standard in many other countries around the world, but I
can say that the sense of empowerment which one receives by such a grant of
rights makes one respect the system which grants the rights, and it gives one
the emotional encouragement to go forth and explore new opportunities in places
which were once, as a practical matter, off‑limits.
As a result, it is my expectation that many more
people with disabilities in the U.S. will be employed in the future than have
been in the past, that all people with disabilities will have access to places
and programs that people without disabilities have taken for granted, that our
built environment becomes an environment of inclusion, that people with
disabilities will be more productive and productive longer than ever before,
that people with disabilities can be fully participating members of their
families, schools, churches and communities, and that people with disabilities
will have a sense of self‑respect, dignity, and personal responsibility
which they have not enjoyed before. I am passionate about the Americans with
Disabilities Act!
GLOBAL PERSPECTIVE
The ADA has achieved a lot, but it is subject to
challenges from many fronts, and it does not address many basic needs of people
with disabilities. There have been challenges to the ADA from both public and
private entities and even from some states. The Supreme Court has limited some
aspects of the law. Although the fundamental integrity of the ADA remains
intact following these challenges, people with disabilities in the United
States still face discrimination. The ADA may provide a starting point for
other countries that wish to model it, but it is not a panacea.
Unfortunately, there is no country in the world which
has a comprehensive model for protecting the rights of people with disabilities
and an infrastructure capable of assuring delivery of services needed to meet
the basic needs of all people with disabilities. Furthermore, I am aware that
people with disabilities in many countries in the world today are regarded as
useless and unnecessary. In these countries, we have heard of genocide, and we
know of extreme physical and mental abuse. I am outraged by this, and I believe
it has to end.
There are few things that one country can do to impose
right and moral thinking on another country. But there is a lot we can do that
we are not doing to help educate the people living in those countries. For
example,
• Why
aren't the international "education‑oriented" radio networks
which are sponsored by many countries and are broadcast to nations around the
world delivering information about proper treatment and services to people with
disabilities?
• Why
don't these international networks provide peer counseling to people with
disabilities who may be listening?
• Why
aren't we telling the public in the countries where the broadcasts are directed
about equal opportunity for people with disabilities as well as for the public
in general?
Foreign aid programs may also be used to influence
improvements in treatment of people with disabilities, particularly those in
developing countries.
• Why
don't we require countries which receive our foreign aid to be in full
compliance with the United Nations Standard Rules on the Equalization of
Opportunities for Persons with Disabilities? Are we afraid we might
impose a standard in another country which we are not meeting ourselves?
• Why
don't we provide assistance to aid‑recipient countries to help them be in
full compliance with the standard rules before we give them anything else? Can
we argue that other citizens must have food before people with disabilities can
have food or shelter or leave their beds in order to find a toilet?
Those of us who are conscious of disability issues and
who are at least partly aware of the implications of globalization and the new
world society must take an early stand on the matter of disability rights in
this context.
PERSONAL PERSPECTIVE
Now from a purely personal perspective of an
individual with a disability: I broke my
neck in a car accident 33 years ago. Before that, I really had not given any
thought to issues pertaining to people with disabilities. In that respect,
perhaps I was no different from most other people. After I became disabled, I
learned very quickly about such practical matters as barrier free access. A
little while later, I began to understand the concept called program access.
Finally, after many frustrating experiences and a great deal of introspection, I
began to have an appreciation for the concept of discrimination. Since I became
disabled, society has made much progress in addressing the many issues which
confront people with disabilities. Today, I have access to many places, and I
can go places that I never would have thought of going 30 years ago.
Improvements in barrier-free access and dramatic breakthroughs in technology
have made life easier for all of us, particularly those of us with
disabilities.
The often‑abstract concept of discrimination has
been addressed in some places. Nevertheless, as a person with a disability, I
continue to be frustrated by physical barriers which seem to be unnecessary, by
program barriers which I frankly regard as absurd, and by discrimination which
I believe is simply immoral.
Probably like many people, I am amazed by the rapid
worldwide adoption and spread of new programs like recycling, of new appliances
like microwave ovens and computers, and of new technologies like wireless
networks. All of this progress is fantastic. We are living in an age of
invention and rapid development. In paradox to all of this amazing development
and the improving status and quality of life for most people around the world
is the status and quality of life for disabled people. In modern cities where
almost everyone has a cell phone, a television, and maybe even a computer, many
buildings are still inaccessible; public transit systems serve only those in
the public who can walk; and communications systems are designed only for those
people who can speak and hear and grasp a small instrument.
Even in poor countries, where highways are being built
to accommodate growing numbers of automobiles, and where young people manage to
get Nike tennis shoes and designer jeans, people with disabilities don't have
wheelchairs or other technical aides, they don't have the human assistance they
need to dress and undress, they don't have readers to help them access printed
material, and they don't have sign language interpreters to help them
communicate with others. In fact, people with disabilities in any country that
can be named are surviving with a standard of living lower than any other
sector of the comparable society‑‑in many countries, they are
barely surviving.
To be quite honest about it, I cannot understand why
in the world, nearly 40 years after the concepts of barrier-free access,
normalization, and equalization were developed and more than 30 years after men
walked on the moon, my friends with disabilities in countries around the world
have no means by which to roll outside their homes, to receive information in a
manner that they can have access to it, and to have the basic assistance they
need to survive in a manner above that of sub‑human.
IMPERATIVES
I believe that there are three imperatives to which we
must commit ourselves in order to ensure that people with disabilities are able
to share in the marvelous future of human kind and even to obtain the basic
amenities of life in the present time.
First, we must work together in partnership. we must stop fighting, stop
competing, stop working at cross purposes. Groups representing different
disabilities must work together, disabled and non‑disabled people must
work together, professionals and consumers must work together, disability
leaders in developed and less developed countries must work together.
As one means of achieving the goal of partnership
among cross-disabilty groups, the leaders of six
major international disability organizations have formed the International
Disability Alliance (IDA) to advocate for equality and social justice for
people with disabilities around the world. For its part, Rehabilitation
International is working to bring together consumers, advocates, family
members, rehabilitation professionals, and government leaders to work on
policies and programs designed to empower people with disabilities. Even with
these exemplary efforts, there is a need for more work to resolve the
differences between the various interest groups in the disability movement and
to break down the barriers which prevent their coordinated and mutually
supportive achievements.
Second, we must have a United Nations Convention on
the rights of people with disabilities
which is enforceable and which extends assurances of assistance to every
disabled person in every country of the world. In U.N. parlance, the term
“convention” means “treaty,” as opposed to a convention or meeting in the usual
sense. Such a treaty will need to be supplemented and implemented by national
laws. It should be noted that there has been an encouraging trend in the recent
past toward implementation of national disability laws and policies that commit
governments to providing access to necessary services and promoting inclusion
in society. In addition, there are
disability‑specific instruments of the U.N., such as the Declaration on
the Rights of Disabled Persons and the Standard Rules on the Equalisation of Opportunities for Persons with
Disabilities. Of course, these instruments, while useful in providing
guidelines, are not legally binding.
While there is great value to such laws and
instruments from an international perspective, the lack of global standards for
the protection of these rights is problematic. Inconsistencies among regional
instruments as well as among national laws suggest that in many cases, cultural
and social perceptions regarding people with disabilities adversely affect
these policies. Furthermore, there are
countries that are not governed by any regional instrument and where national
protection mechanisms are insufficient by any standard.
A Convention at the United Nations on the rights of
people with disabilities offers these advantages: it would be well known to all
people in the world, it would serve to collate all of the provisions and rules
that address treatment of people with disabilities by member nations, and it
would provide clearly understood and organized methods for enforcement of its
provisions on behalf of people with disabilities.
Third, we must empower people with disabilities. Our governments must institute and enforce policies
and laws which protect the rights and promote opportunities for people with
disabilities, and they must assure that public services are equally accessible
for all people with disabilities. Our commercial enterprises, businesses, and
industries must implement procedures which allow their services and products to
be accessible to people with disabilities, and they must provide employment and
job development opportunities to people with disabilities. Our schools must
fully address the educational needs of people with disabilities, and they must
ensure that no one is left behind due to physical or programmatic barriers. Our
churches, synagogues, and mosques must assure full access so that people with
disabilities can find spiritual support as they wish. Our professions must
actively encourage and recruit people with disabilities. Our social service
organizations must identify, prioritize, and address the support service needs of
people with disabilities in the community to assure that people are not
prevented from reaching goals due to lack of services or other infrastructure
barriers, and they must strive to serve them in a manner which assures dignity
and promotes independence.
Today, in order to obtain the basic essentials of
survival--shelter, food, and clothing--people with disabilities throughout the
world are forced to beg in some less developed countries. In the more developed
countries, people with disabilities are forced into virtual begging. This is
untenable. People with disabilities should be empowered to make decisions which
affect our lives. People with disabilities should be empowered to engage in
independent living, as they may choose. People with disabilities must be
empowered with rights to protect them from discrimination. In fact, we people
with disabilities must be empowered socially, culturally, politically, and
economically.
ECONOMIC EMPOWERMENT
The aspect of economic empowerment in the disability
community is too often left out of the contemporary dialogue of pertinent
issues affecting the lives of people with disabilities. In 1869, at the
beginning of the movement for equality of women in the U.S., the great American
patriot Susan B. Anthony said that the movement’s goal was for every woman to
have a pocketbook, and in this, she linked equality and empowerment with
economic independence. It is clear that one of the greatest divides between
people with disabilities and the rest of society today is that of economic
parity. For people with disabilities to benefit from the opportunities which
the 21st century world has to offer, they must have the means to
survive and to prosper. There is no question that people with disabilities
around the world have the desire to be productive and to engage in competitive
employment and even despite substandard educational and training opportunities, most of them have unique skills and
knowledge. But the absence of opportunities and the resulting lack of resources
prevents them from achieving their goals, from
acquiring needed assets, challenges their dignity, and frustrates any hope
which they may have for empowerment.
Those of us who have achieved some degree of success
in our lives can espouse and advocate for the attributes of equality, and we
often do so. Most of the time, we reference equality in terms of rights to
vote, to public services, to education, and to employment. But seldom do we
discuss empowerment in terms of economic justice. Those of us who have modest incomes
and even some savings find it difficult to relate to the majority of people
with disabilities in this regard. It is my belief that we must be more
sensitive to these issues of economic empowerment as we work together to seek
equality, independence, and opportunity for our colleagues with dis around the world.
CONCLUSION
I am convinced that now is the time for the global
disability community to act in partnership to achieve full recognition of our
rights and appropriate implementation of remedies to discrimination, including
the provision of needed services and the opportunity to obtain economic and
well as social justice. I am fearful that as the world becomes a smaller place
to live in, and as we all properly begin to share in the rich benefits of our
human intellect and our planet, that we will compromise certain expectations
and standards to which those of us in richer, more developed countries have
grown accustomed. Our shared commitment should be to set a high standard and to
reach that standard so people with disabilities everywhere can enjoy their
lives; so they can have the opportunity to improve their standard of living and
that of their families; so they can be fully contributing members of their
respective families, communities and societies; and so they can contribute to
improving the quality of life and standard of living for all other people
throughout the world.
Now is the time to act by implementing that which we
know, by committing ourselves to standards like those of the U.N. Standard
Rules, to enact new laws when necessary, and to ensure appropriate treatment of
and protection for the rights of people with disabilities. We need to do this
in our individual states and nations, we need to do it in regional bodies like
the European Union and the North American Free Trade Alliance, and we need to
do it globally, at the level of the United Nations.
Now is the time for the disability community,
nationally and internationally, to act by implementing a U.N. Convention which
will ensure appropriate treatment of and protection for the rights of all
people with disabilities. I believe that we must have this convention before
the end of this first decade of the 21st Century. In order to achieve this
goal, all of us must recognize our closeness to one another in a world where we
are growing more interdependent every day, and we must work together in
partnership. Together, we can create a new future for people with disabilities
around the world‑‑and it will be a better one for us all.
# # #
ABOUT THE AUTHOR
Lex Frieden is professor in the departments of
physical medicine and rehabilitation and community medicine at Baylor College
of Medicine. He is also senior vice president of The Institution for Rehabilitation
and Research (TIRR) in Houston. He served as executive director of the National
Council on Disability from 1984 to 1988 where he was instrumental in conceiving
and drafting the Americans with Disability Act (ADA). He serves as president of
Rehabilitation International.
ACKNOWLEDGMENTS
Portions of this article were taken from speeches made at the World Congress of Rehabilitation International in Rio de Janeiro in 2000 and at a 2001 meeting of the European Union in Linkoping, Sweden. Assistance in preparing this article was provided by my colleague at the Independent Living Research Utilization (ILRU) program at TIRR, Laurel Richards. Together we are on the staff of DisabilityWorld, an Internet-based journal focusing on international disability issues. DisabilityWorld is available only on the Web at www.disabilityworld.org. It is published monthly and has a comprehensive and searchable archive.