Inclusion & Universal Cooperation

By Rosangela Berman Bieler, Inter-American Institute on Disability (IID) (iidisab@aol.com)
 

Rosangela Berman-Bieler, IID's President, and James D. Wolfensohn, World Bank President, during the Development Marketplace Competition, in March, 2000, at the World Bank Headquarters, in Washington, D.C., USA.

(This article was first presented to the 1999 TASH International Conference, held in Chicago).

In nature, all living creatures have the same structure of genetic code - the DNA. At a certain point of the process, the codes start to differentiate, bringing specific identity to each species, each creature.  One of the beauties of life is that this same DNA that generates so many similarities among living being is what also makes them so different and individual.

While generating her family Mother Nature made sure that life would contain, at the very same time, simplicity and complexity. Each piece of the puzzle, even the tiniest part of it, has a role, in the way - and the only way - that the puzzle can be assembled and kept in balance. From the perspective of Humankind, this requires humility and pride, to understand and accept that we are really, really small in the whole context of the universe but each one of us has a role that must be played to accomplish its balance. We should learn how to live in diversity, how to accept the individual differences and how to make them benefit us all.

It seems that we, disabled people, have that vision. We can feel and understand such concepts. This vision makes us responsible and makes us into good role models, spokespersons for the transformations that society must begin to go through. Are we ready for it?

In Brazil, we tell a story of a hummingbird that, during a very big fire in the forest, was seen coming back and forth, carrying water in his beak and dropping it over the fire. The other animals, most of them bigger and stronger than the hummingbird, were all running away as fast as they could, thinking only to save their own lives. While running, a lion watching the hummingbird, asked him if he had not yet realized that he would not extinguish the fire with such drops of water, but instead, he would get himself killed. Without stopping work, the tired hummingbird then told the lion: "I'm just doing my part".

In our daily lives, when we make decisions, most of the time we have to choose between the lion's and the hummingbird's vision of the world, of life and of ourselves. Do we normally think or truly care about the ones around us?

Poverty & Disability

Poverty is a deprivation of the essential assets and opportunities to which every human is entitled. Everyone should have access to basic education and primary health services. Beyond income and basic services, individuals and societies are also poor - and then tend to remain so - if they are not empowered to participate in making the decisions that shape their lives.

Approximately four-fifths of the world's disabled people live in developing countries. Poverty creates the conditions for disability and disability reinforces poverty. Exclusion and marginalization of disabled people reduce their opportunities to contribute productively to the household and the community, and thus increase poverty.

Disability is expected to increase in the future, if global economic growth remains unbalanced and does not accommodate equity, environment and social concerns. Disability will also increase as society becomes older. The proportion of disabled children in developing countries is also higher compared to developed countries. Many types of disabilities that are no longer or rarely seen in wealthy countries such as polio, iodine deficiency, landmine injuries, leprosy sequelae are still common in poor countries.

Disability colors and sharpens all aspects and conditions of humankind. It accentuates and aggravates situations of discrimination, prejudice and exclusion faced by women, by minorities, by poor and all other underprivileged groups. It also clearly highlights and illustrates the diverse physical, mental, sensory aspects of being human, obliging society to react, interact and reflect about it.

Inclusion and Full Participation

The process of reaching empowerment and full participation as citizens is long and on going. It obliges us to forge our history, personal and collective, on a daily basis. In fact, full participation can only be truly achieved in an inclusive society, where each and all of us is considered to be an integral part of the whole, of the community, which in turn is a responsibility of all its members.

But to achieve this "ideal society", constant vigil is required.

Our existence and our lives, our constant fights for acceptance and recognition are a testimony of our resistance against exclusion.  We are still here, after millennia of discrimination, marginalization and even in some cases elimination of disabled people from the face of the earth through racist and eugenic initiatives. But, the human being resists and survives because it is a form of life meant to do so...

Because we, people with disabilities, have historically and still face discrimination and exclusion in our daily life, the disability community, our families and our allies, all over the world, we are - no doubt - the group of human beings that has discussed and analyzed in greatest depth the concept of diversity and inclusion.

It is our role, our turn to offer our testimony, our knowledge, our wisdom to society, at this very same moment when, although not yet recognized by many, it's time to move ahead. We already have the feeling, the concept, the understanding, the words to explain what an inclusive society means. Now it's time to incorporate these concepts into our own lives, attitudes and actions. Only in this way we can truly help to open minds and hearts toward a society for all. We have this huge responsibility and we don't have the right to fail.

Part of the Whole

For the last 20 years or more, it has been claimed we represent 10% of the world's population, with specific rights that would give us equal opportunity to survive and join our communities.  We continue requesting that society accept us and recognize our rights. We are still outsiders knocking at the door for shelter.

Now we have a new challenge: instead of proving we are 10%, we must convince society we are an irreplaceable part of the 100%. It may seem pure rhetoric but it would signify a very crucial switch in the disability movement's approach. Now that we are beginning to achieve recognition as a group within the many excluded groups that are navigating around society, it's time to mix ourselves again, with everybody else, and get in. We want to be identified within the regular 100%, mixed with the other children, the other elders, the ones who are too tall or too fat, the blacks, the indians, the foreign, the poor, the different - all these different parts of the same body, the same society.

We should not fear that this means we will lose our identity or the advances that we've already achieved. This will mean expansion of possibilities, establishment of new partnerships, mutual support and solidarity - universal cooperation.

For 15-20 years we testified among strong social minority groups defining themselves as excluded. On another "stream" we have seen ecology groups bringing to discussion the concept of diversity. But, following human nature, each one of these groups was not really getting the whole picture, but only their specific interests. It was once said that the history of the world is the history of exclusion. This is an approach that is not acceptable anymore.

We, the whole society, have to start seeing each other as one, with many faces and ways of expression. We have to start practicing what we request others to do. We have to think inclusively and to live inclusively.

Time for Cooperation

We, as people with disabilities tend to only represent and protect our own agendas. But we want everybody else to include us on their agendas, as a priority. We have the right. Society is in debt to us. But who is "society"? In our own lives, don't we also exclude, discriminate, hate?

Adults with disabilities have rarely advocated for the rights of children with disabilities. This mission was led almost exclusively by parents, as their cause was different from ours.  Still in many countries, psychiatric survivors are not accepted as part of the disability community. In 1999 we are still creating international forums to gather some disability organizations, with the hidden purpose of excluding others from participation.  We still see the different areas of disability fighting against each other, professionals and families being treated as enemies by organizations of people with disabilities and vice-versa. Of course there are historic reasons for all of these attitudes but we cannot be using this excuse anymore.

In other spheres, we see women's movements excluding the disabled women's cause from their battles.  We see total lack of solidarity and collaboration within the social movement, as if we could solve the problems of one group without solving the problems of society as a whole.

We see the United Nations excluding people who speak languages other than English from participation in the discussions. Far too many of the UN and its agencies' documents are still only available in English, when not translated through an isolated initiative from a country member organization. Even now, in the Globalization Era, communication and information is meant to be a luxury of just a few.

With the Era of Globalization, information circulates instantly. The notion of time and space is modified and today we participate in a faster world, more global, more technological, more interactive... but, still not INCLUSIVE.

International programs to assist economic and social development should require minimum accessibility standards in all infrastructure projects, including technology and communications, to ensure that all people are fully included in the life of their communities.

Some of us have the luxury of living in countries that provide a high quality of life for the majority for their inhabitants. My country, Brazil, unfortunately suffers from one of the worst distributions of wealth of the world. But if we put it in perspective, the U.S., for instance, has one twentieth of the world population and accumulates one third of all the wealth in the world. Universal cooperation is urgently needed.

A Future for All

Today, the issue of INCLUSION permeates our political speech, not just in the area of disability. And this HAS to be coherent with our practice, both internally within the movement as well as in relationships with the public in general.

As Justin Dart, a powerful leader and humanist of the disability movement in the US says:

"We must change a value system that defines winning as gaining symbols of prestige that make one person feel superior to other people. Winning is when you fulfill your personal potential to create a life of quality and dignity for yourself and for all." And he concludes: "Life is not a toy store game that requires losers. Let us declare the 21st Century as the Century of victory for all."

Prejudice and discrimination are the basis of exclusion. The concept of Inclusion is holistic and it can only successfully exist if absorbed and worked out by the whole society, together.

Notice the major shift in approach, for instance, within the area of Disability over the last century: Among the "old paradigms", was initially institutionalization, where all who were "different", were segregated, treated in isolation of the social context. Later came patterns of "normalization" and "integration", through which society intended "to adapt" those considered "different" to the existent status quo; a society that excludes everything that does not quite fit within its framework.

Human beings have not been intrinsically inclusive but, on the contrary, discriminatory by nature, fearing and rejecting everything that is different, everything that it does not know or understand. We built a society planned and projected for a man's pattern close to "normality " that, accordingly to international statistics, doesn't correspond the real condition of over 80% of the population.

Now we are talking about re-construction; a new concept of society, inclusive, to be planned for all.  It means we will no longer plan our physical spaces and our services just for the mythical average man anymore, but for the real population, including older people, children, pregnant women, obese, people who are temporarily impaired, wheelchair users, blind or visually impaired, deaf or hearing impaired and so on...

We are talking about DIVERSITY: a NEW society, from and for men and women of all the ages and physical conditions, of all origins, races, cultures, religions, sexual and ideological options, social conditions... The only kind of society that can be sustainable and allow true and full human development.

This future requires the growth of human and personal development, tolerance, acceptance, solidarity and cooperation.

Our generation of the disability community has had the privilege of helping to generate new paradigms for the future, within the universe of diversity. Now we have the chance and the challenge to contribute to their actual implementation. We will only be able to do this if, serving as individuals and institutions, we apply these new paradigms of this still utopian inclusive society as the basis for our daily decisions and personal and professional actions.

Values such as tolerance, solidarity and cooperation should lose their almost religious stigma and become part of our daily lives - concepts to be truly practiced, with mind and heart.

Here, now, day-by-day, we have the responsibility to help build the magic moment of transformation -- when we will sit down to the same table, councils representing human groups of every kind; a "Council of Jedi " celebrating the force, wisdom and fortune of DIVERSITY.