Toward a Barrier Free World for All
presentation by Lex Frieden, President, Rehabilitation International on the occasion of the EU expert meeting: Toward a Barrier Free Europe for Citizens with Disabilities, Linkoping, Sweden, April 25, 2001
It is a great honor and a privilege for me to have the opportunity to address you here today. I am very grateful to the Swedish organizers for including me in this important program.
As I understand it, this program is part of a series of efforts to insure that the European Union appropriately addresses the concerns of people with disabilities in its organizational activities. This is, of course, a very important undertaking, and I applaud you all for the important roles which you are playing in this initiative.
I would like to speak to you today from my perspective as an American with a disability, and as one who was intimately involved with the conceptualization and codification of the Americans with Disabilities Act. Second, I would like to share some ideas from an international perspective, and finally, I will close with a few comments from a purely personal perspective.
As I visit with friends in Europe, and as I review written materials, I am struck by the earnest discussion which seems to be occurring here about the role of civil rights as they pertain to equality of people with disabilities. It is also interesting to me that frequent reference is made to the Americans with Disabilities Act as a model of forward thinking disability policy. In reality, for us, the ADA is, in some ways, only a symbol of failed policy in the past. In many respects, Europe was way ahead of the United States in regard to the treatment of people with disabilities in the early 1980s, when ADA was first conceived.
Fundamental European advancements
We regard the concepts of normalization and equalization for people with disabilities as products of Europe, specifically Scandinavia. Many of us with disabilities, who were working on policy matters in the 1970s, advocated modeling European standards for barrier free access, barrier free design, practical transportation access, para-transit services, personal assistant service programming, adapted housing for people with disabilities, technical aides, inclusive education, unemployment compensation policies, social compensation, and political inclusion. While our understanding of these standards may have been limited by our lack of detailed information about them, we envied what we knew about programs and policies affecting people with disabilities in Sweden, Norway, Denmark, Finland, the Netherlands, and to some extent Germany, France, Great Britain, and others. We thought the more mature cultures in these countries had generated philosophical underpinnings which could serve as the foundation for building policies and programs that would provide people with disabilities the support they needed in order to fully participate in and be a part of the mainstream society.
Strong resistance to new philosophies
By visiting European countries, and by reading about the experiences of people with disabilities living in European countries, we realized that these philosophical underpinnings, the concepts of normalization and equalization, were evidently not strong enough to penetrate the resistance of some social and belief systems, and they were certainly not strong enough to move issues related to access by people with disabilities forward in the context of political debates about economic priorities. While we will be forever grateful to our European mothers and fathers for giving us a strong moral foundation, a good understanding of community responsibility and democracy, and a passion for independence, those of us with disabilities in America have not found in Europe the panacea which we had hoped to find here.
Around the globe: no exemplary standards set
This is not to say that we do not value the efforts of nations in Europe to provide support and assistance for our colleagues with disabilities in your countries: Indeed, we are very respectful of these efforts, many of which exceed our own. Finally, this is not to say that we think we in the U.S. have established an exemplary standard: We most certainly have not. My point, quite simply, is to say that nowhere in the world today are people with disabilities treated with the appreciation, respect and dignity that they deserve as human beings, and nowhere in the world are they given the necessary supports and opportunities required for them to be fully participating, fully contributing citizens. No matter where we look, people with disabilities are limited by the human-built environment, we are limited by human-made rules, policies, and laws, and we are limited by the disrespect, low esteem and low expectations given to us by the society at large.
Using a civil rights framework
In the U.S., the Americans with Disabilities Act was 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, improved services and raised status 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, quite simply, 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 founder's commitment of equality.
Reality of discrimination now widely acknowledged
Despite what we in the disability community consider to be landmark legislation, the ADA is still not perfect. You have heard of the challenges to the ADA from both public and private entities, and even from some states. You have also heard that the Supreme Court of the United States 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. Nevertheless, the ADA was a giant step forward for us, and it remains a powerful and effective tool. To the extent that it might serve as a useful model to you, I recommend it; but I do so with qualifications. Personally, I think the best thing about ADA is that it has altered the mind set of policy makers and politicians, of employers and business owners, of government agencies and public officials, and of people with disabilities and the public in general. It is now widely acknowledged in the U.S. that discrimination against people with disabilities is a reality, and one that should fairly be addressed by laws and by public action.
Empowerment as an energy source
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 tell you, 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 confidence 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 will progress to an inclusive one, 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.
International perspective
You can see that I am passionate about the Americans with Disabilities Act. Now, I would like to make some comments from an international perspective. As I have said, I do not regard the American system as a particularly good model for other systems, especially when it comes to matters pertaining to people with disabilities. 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. On the other hand, as I have said, there is no country in the world today, that I know, where there is a comprehensive model for establishing and protecting the rights of people with disabilities, and for having an infrastructure capable of assuring the delivery of basic services and meeting the basic needs of 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.
Underused tools and techniques
I know there are very 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 propaganda-oriented or "education-oriented" radio networks around the world, which are sponsored by many of our countries, 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, and 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.
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.
I think that those of us who are conscious of disability issues like the ones to be discussed here today and tomorrow, 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, if I may comment from a purely personal perspective: 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.
Unnecessary, absurd and immoral
As we have discussed, even the often-abstract concept of discrimination has been addressed in some places from the perspective of people with disabilities. 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 of you, I am amazed by the rapid world-wide 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 people with disabilities. In the same modern cities where almost everyone has a cell phone, a TV, and maybe even a computer, many buildings are still inaccessible; public transit systems serve only those in the public who 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 aids, 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 you may list, are surviving with a standard of living lower than any other sector of the comparable society -- in many countries, they are barely surviving.
40 years later: many still 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.
Need to set high standards now
Ladies and gentlemen, and friends, now is the time to act and to be serious about what we do. 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. My intent, and my commitment, which I hope you share, is to work together 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 EU, and we need to do it globally, at the level of the United Nations.
I will close my comments today with one note about an effort in which Rehabilitation International, Disabled Peoples' International, Inclusion International, the European Disability Forum and others are now involved. That effort is to secure a Convention at the United Nations on the rights of people with disabilities. Unlike other U.N. instruments which presently address many of the points which I have made here and about which you are familiar, a Convention would be well known to all people in the world. It would also 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. I hope you take the opportunity to consider our proposal for a Convention and I hope you will join us in working for its early adoption.
Thank you very much for your attention and for the opportunity to share these thoughts with you here today. I am grateful to all of you for your work on my behalf and on behalf of all people with disabilities. Together we can create a new future for people with disabilities in Europe and around the world -- and it will be a better one for us all. Thank you.
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