Independent Living and Our Organizations: A Definition
by Dr. Adolf D. Ratzka
Independent Living Institute, Stockholm, Sweden
Presentation at the conference "Our Common World" organized by Disability Rights Advocates Hungary in Siofok, Hungary, May 9-11, 1997
Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.
Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves. To this end we need to support and learn from each other, organize ourselves and work for political changes that lead to legal protection of our human and civil rights.
Statistics show that disabled people have less education than the rest of the population, have worse housing, are more often unemployed; fewer of us get married and have children. We have been told that we are different and that our lives are worthless. In many countries babies with disabilities are not even given the chance to live, they are killed before they are born.
One of the most important causes of our second class citizenship is the way society looks at persons with disabilities. There is a tendency to label people who are different as "sick". Sick people do not have to work and are exempted from the normal duties of life. As long as we are considered sick by the general public, there will be little understanding, for example, why we need to use regular public transportation, why we demand real jobs and not just therapy.
If we let other people treat us as if we were sick persons, we should not be surprised, if they try to protect us and in the process control and limit our lives. If we consider ourselves sick and in constant need of a "cure", it will be difficult for us to accept our disability as a normal part of life and to carry on with our lives.
The medical model of disability sees the problem in the individual. I cannot use public transportation in most countries. Is it because I had polio some 30 years ago or is it because the busses are constructed without consideration for the needs of all users, including people like me who use electric wheelchairs? As long as society believes that the problem lies within me, there will be no accessible busses.
The medical model uses diagnostic labels which tend to divide disabled people into many different groups. Diagnoses make us feel different when, in fact, we share many of the same problems. In the Independent Living philosophy it does not matter for what reasons we have a disability. What matters is the recognition that all people regardless of type or extent of their disability can learn to take on more responsibility, to make more decisions concerning their lives and to contribute more to their families and the community.
Rehabilitation is an intervention that is limited in time and scope. We need to have access to the best medical and rehabilitation services including assistive devices. But real life starts after rehabilitation, only then we find out whether society is ready to accept us. Unfortunately, most often we find that society needs to be rehabilitated more than we do.
Many of us are shut away in institutions. There, it is claimed, we can be better "cared for". With this argument we are put into special kindergartens, special schools, special workshops, special housing and special transportation. Special schools or special workshops make us feel different and prepare us poorly for the competition in the real world. Our movement is fighting to shut down institutions and to force our way into the mainstream of society.
In many countries there are charity organizations, headed by non-disabled individuals, which raise funds by depicting us as helpless, pitiful and miserable beings. Often these organizations speak out on behalf of disabled people and advise governments on disability policy. Disabled people themselves are seldom asked about what they need.
How can we improve our situation? How can we empower ourselves?
We must break the monopoly of non-disabled professionals who speak on behalf of us, define our problems and suggest solutions to our needs. We must build effective organizations that represent the views of disabled people themselves. Governments have to recognize our organizations as partners in shaping disability policy.
Disabled people have to utilize the political process and run for office. In most countries, about 10% of the population have a disability. The world would look different, if in each country 10% of the politicians had a disability.
By the same statistics, with only 10% of the population we are a minority. In a democratic system we cannot expect to get legal reforms and support systems approved by parliament unless we are able to convince other voters. We need political allies, we need to build up alliances among the various organizations of persons with disabilities. We also need to look for allies among the non-disabled. There are many non-disabled persons who support our fight for equal opportunities, for human and civil rights. And we have to reach out and convince more people of our just cause. But one thing has to be made very clear: We are the experts. Disabled people have to run, represent and control their own organizations. We have to be at the forefront of this struggle. Non-disabled people can support us from behind.
In fighting for our rights we can be more effective when we help each other in changing our attitudes towards ourselves. To see yourself as a profoundly ordinary person is difficult when you have always been told that you are different, that you can not do this and can not do that. In this struggle we need to talk with somebody we can identify with, with people who are in a similar situation. We call it peer support. Peer support means to share the fruits of one's experience.
In a number of countries, disabled people are helping each other in Independent Living Centers by sharing information, advice, legal aid and peer support and by organizing the disability community. The people who work in Centers for Independent Living are themselves disabled and know what they are talking about from first-hand experience. The centers work for changes in the communitiy, such as improved access in housing and transportation. In several countries, Centers for Independent Living receive regular government funding, because it is recognized that disabled people are the best experts on matters concerning disability.
Any society that claims to be a democracy and respects human rights has to extend these rights to all its citizens. In order to guarantee our rights there has to be proper legislation including monitoring, periodic revisions and effective sanctions. The organizations of disabled people have to be decisively involved in all these stages. Legislation must protect us from discrimination in all areas of public and private life. The United States have set an example with its Americans with Disabilities Act that was highly influenced by the Independent Living philosophy. Such legislation is now in place or is being worked on in a growing number of countries. But we disabled people must realize that no piece of legislation by itself will automatically guarantee our equal rights unless each of us in his or her everyday life actively claims and uses these rights.
Throughout history there has been the attitude that disability is a catastrophe for the individual and the family, that we depend on the mercy or solidarity of other members of society, that we can not contribute, that we are a burden. This brainwashing has distracted us from the realization that disability is a political problem, a question of unequal distribution of power, not a medical or technical problem.
Because we have been told we cannot do much for ourselves, we have relied on other people to fight for our cause.
Because we have been ashamed of our disability, we have stayed in the background.
We are the last minority to fight for our rights and we will not go away. Even with the most sophisticated prevention, early detection and rehabilitation services there will always be people with disabilities and we have to build our societies in such a way that everybody can live in them with dignity and self-respect. And we have to start now.
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