PERSPECTIVES ON THE STATUS OF PEOPLE WITH DISABILITIES INTERNATIONALLY
by Lex Frieden
June 30, 2003
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
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!
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.
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.
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.
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.
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.
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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.
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.