Independent Living Institute www.independentliving.org


logo of European Network on Independent Living

Third ENIL Seminar
Stockholm, Sweden
June 1991

Organizer: ENIL, European Network on Independent Living
Host: STIL, Stockholm Cooperative for Independent Living


Table of Contents

Preface
Background to the Seminar
Aims
Approach
Topics
Opening address by Kalle Könkkölä
Principles of Independent Living, by Adolf Ratzka
Disability in Bulgaria: Crisis due to the transition to a market economy, by Gallina Atanassova
Berliner Zentrum für Selbstbestimmtes Leben behinderter Menschen e.V.
Club Contacts, Moscow, by Ekaterina Kim
Alternative forms of fundraising, by Ulf Andersson
Alternative forms of fundraising, continued, by Jörn Hammarstrand
Conclusions from the ENIL Seminar
Presentation of the host organizer
List of participants


Preface


The third ENIL Seminar held in June 1991 was organized on a shoestring budget. Our guests were put up at STIL members' homes and shared food and transportation with them. At times conditions were somewhat crowded. There are definite advantages to learning about Independent Living from each other while waiting in line to get to your own toilet!

We first had other plans for the documentation of the Seminar. In the end it had to be done by volunteers who typically take their time.

The participants from Central and Eastern Europe did not seem to mind the tight budget and the makeshift organization of the whole. They seem to be quite used to improvization. I think, here is something very important for all of us in the richer countries to learn: rely on group dynamics, trust in people's ability to learn from each other, do not get uptight about timetables and programs. Keep events small and inexpensive, see a virtue and a necessity in spontaneity and improvisation.

The theme of the Seminar was to be "Alternative forms of fundraising". It soon turned out that we had severe language difficulties. I am not only referring here to the need for interpreting every sentence first to English and then back to Italian, Russian, Swedish, Czech, Bulgarian and German. Here went my first preconceived notion: I had expected everybody from Central and Eastern Europe to speak Russian.

How to explain the Independent Living philosophy to people who need just about everything that I am taking for granted in my part of the world, such as food, housing, health care ? Our critique of our system of service delivery for assistive devices or personal assistance does not carry much weight in the eyes of someone who has to wait two years or more to get a wheelchair in a society where everybody takes it for granted that the family "takes care of" you until the bitter end. It is easy for us Westerners to claim that Independent Living is a mind set, not a shopping list of material goodies.

The biggest language barrier, however, was that even when we thought we understood the words somebody used we still did not grasp the concept that was to be conveyed. Take the idea that organizations of people with disabilities should start businesses in order to create employment for members and hopefully create some profits which can be used to organize the disability community. Try to explain to somebody from Russia that profits are not the automatic result of all economic activity. Our friends from Moscow assumed that as long as you have a company and produce anything, you are bound to make plentiful profits. When you try to show them that one first has to have a good product, an efficient form of production and distribution, competitive quality and a better price than the guy next door, they probably think that you are a hopeless leftist who wants to talk them out of embracing the market economy.

The Seminar did not spend much time on alternative forms of fundraising. We found other, more immediate needs to talk about. Unfortunately, we could not record our very interesting discussions with the amazing and often enlightening misunderstandings we created for each other. We did learn a lot from each other though and I am looking forward to the next event of this kind.

Adolf Ratzka,
Editor


Planning Seminar with representatives of disability organizations
from Eastern and Central Europe in Stockholm, June 17-19, 1991

Background

In countries with severe economic problems and where disability issues have been neglected, organizations of disabled persons have great difficulties in raising the necessary funds for their activities.

Traditional fundraising methods consist of approaching charitable organizations, corporate sponsors, governments and international governmental bodies. These sources carry high costs in the form of influence by the donor on the organization's politics. Funds that can be used at the sole discretion of the respective disability organization are difficult to find.

Historically, many organizations of disabled persons started out as self-help groups geared towards creating income generating projects in order to provide both employment opportunities for their members and resources for their political work. Today, emerging disability organizations could benefit from a similar approach. Yet most people with disabilities are not encouraged to develop entrepreneurial skills. Another bottleneck to economic self-help schemes is shortage of venture capital.

Aims

Participants will start a planning process which will eventually result in a larger conference in 1992. After the planning seminar in June 1991 we will hopefully have

Approach


One of the major topics for the planned larger meeting in 1992 is suggested to be alternative financing methods. The Independent Living Movement places great value in developing projects that provide members with job and training opportunities and generate income for economic independence of our organizations. One of the major bottlenecks is usually lack of starting capital. This is also true for the conference planned for 1992.

Participants will discuss different fundraising methods. In a dialogue with potential sponsors from the Swedish technical aids industry and Swedish popular movements (such as a large consumer cooperative and a labor union) we will train ourselves in the use of alternative fundraising methods which participants can try to use in their home countries.

Topics


Opening address


Kalle Könkkölä, Threshold, Helsinki, Finland
Chair, DPI Europe


DPI is now in a strong developing phase. DPI officers made a decision in London last May to allocate resources for Europe for two years. This means that we have new possibilities to work and develop the European region under the next couple years.

In practice, this means we will have, from the beginning of August 1991 a half day development officer for Europe situated in Helsinki. We will have later this year a normal secretariat in Lisbon, Portugal.

The most important part of the developmental work in Europe is to attract new members in the central and eastern parts of the continent. Secondly, we are trying to get the organization functioning in this region. Thirdly, we have adopted different kinds of practical programmes.

One special area of these programmes i Independent Living. This means in practice that DPI/E will work in close cooperation with ENIL. ENIL can give important substance to DPI/E. We must, of course, remember that ENIL is part of the DPI Independent Living Network.

DPI is a worldwide movement with approximately 90 members around the globe. Europe is still a weak link in the chain but we have great possibilities in front of us. Political and economic changes in our region simultaneously create new challenges and new threats. Breaking physical walls is a reality but invisible economic walls is something we have to fight against.

We know from experience around the world that disabled people have to fight for themselves. Nobody else is liberating and emancipating ourselves but us. We have to support each other; we have to work together, locally, regionally and globally. That is the only way to create a better world for ourselves. And this is our duty for our sisters and brothers.

DPI has decided to create a new structure for Independent Living. This decision was made last year in Finland. It means network approach and it gives possibility to every individual group and organization to join the family. This is an important principle so that we can link all of us together in the future.

With these few words, I wish you all the best and don't hesitate to contact me as the chair of DPI/E and DPI's Independent Living Committee.


Principles of the Independent Living philosophy


Adolf Ratzka, STIL
Chair, ENIL

Introduction

Social policy is typically not made by the people who are most affected by it. Up to now, we, the users of social policies, have had to accept the decisions handed down to us by other people. Since we are often considered helpless and incapable of taking charge of our own lives, the public and often we ourselves have taken for granted that it is best for us, if others, the professionals make these decisions for us. The time has come that we, the users of services, empower ourselves and take the initiative in shaping such key services as personal assistance.

From our own experience we know that the way these services are organized can make a tremendous difference in our lives: in some services we give other people the permission to treat us like mindless vegetables who have no will of their own, no life of their own, endless patience and nothing to do. The goal is, of course, to design services which enable us to become citizen with full participation and equality. Equality is our right, but rights are not handed out, they have to be taken. The Independent Living Movement shows us how to go about this.

What is the philosophy of the Independent Living Movement and what are its aims?

Anti-discrimination

The Movement works against the discrimination of people with disabilities and for more personal and political power. Everywhere people with disabilities as a group are disadvantaged in education, work, income, housing, transportation, in family life, in the social, political and economic lives of our communities. Some of us do not even get a chance to live, because they are killed before they are born. The more assistance we need, the worse is the discrimination we are exposed to, the more limited is our life through attitudinal and physical barriers. One of our goals is to introduce legislation in all countries, that makes it illegal to discriminate against anybody on the basis of disability. Such legislation has to include the provision of services such as personal assistance for those of us who need these services for equal opportunities.

De-medicalization

One of the reasons why we are discriminated against is that we deviate from what people think is "normal". Society has a tendency to label people who are different as "sick". Sick people do not have to work, are exempted from the normal duties of life, and are marginalized. As long as we are considered sick by the general public, there will be little understanding, for example, why we want to use regular public transportation and are not satisfied to go by ambulance or para-transit.

Whether or not we think of ourselves as sick, has a great impact on personal assistance services. If we let other people treat us as if we were sick persons, we should not be surprised, if they will make up lots of rules to protect us, rules that limit our lives and give them control over us.

One of our main goals is to make clear to our communities and to ourselves the difference between being sick and being healthy, normal citizens with disabilities who have the same rights to the good life as everybody else.

De-institutionalization

Since we are often considered sick, many of us are shut away in hospitals and hospital-like 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. The only places that are still not segregated are the cemeteries! We have to shut down these special, dehumanizing and degrading Apartheid solutions and force our way into the mainstream of society.

But institutions do not have to consist of brick and mortar. There are community-based services that can turn your very own private home into an institution. I am talking about the situation when you are made dependent on people who tell you what to do, people you have not hired yourself. I am talking about the situation when you are forced to adjust your needs to the needs of other users, when you are reminded that you have to be reasonable in your demands on life, be considerate and exercise solidarity with other users of the services.

Let's take a hard look at our housing situation and the services which we need such as personal assistance or transportation. Who has come up with these solutions to our needs? Do these services enable us to live a life with the same opportunities that the general public enjoys or do these services limit us, make us appear different and give other people power over us?

De-professionalization

Many people think of us as sick people who have to be "cured" or at least "rehabilitated". Many believe that we need special, tender loving care by lots of people in white coats. The more disabled we are, the sicker we are in the eyes of our surroundings and the more professional training the people need who are charged with the task of taking care of us. In this way, society has handed over to the professionals control over our lives. Many of us have been raised in the belief that a medical doctor or a social worker is best qualified to make decisions regarding our lives. The more power we attribute to the person in the white coat, the less we believe in our own strength.

It is time that we come to a realistic assessment of what other people can do for us and what we can do for ourselves. It is time that we take back the power we have handed over to the professionals.

Control over our organizations

Do we have organizations for disabled people or of disabled people? Are non-disabled professionals in control who look upon disabled people as cases or clients? Or are people in charge who themselves know what it is like to be part of an oppressed minority, people who are fighting for their own rights as well? At the present unemployment rate among our people we need the work and training opportunities that our organizations provide for ourselves. Society looks upon us as helpless people who cannot speak for themselves. If we allow non-disabled people in our own organizations to speak on behalf of us, we are confirming these prejudices. What would the public think about a women's liberation group with mainly men in the office? We want self-determination!

In Canada like in the US an Independent Living Center has to have at least 51 per cent of people with disabilities on the board. Why is it only 51 per cent? Why not 75, 90 or 100 per cent? Aren't we the best experts on our needs? And how about staff? Is there any minimum percentage stipulated in your bylaws?

We need the coalition with non-disabled friends in our fight for equal rights. But if our friends really understand our cause, they will step down from important positions within our organizations.
Self-management of our services

One reason why we need to have staff who have first-hand experience with disability is that we are the best experts on our needs. Services, such as transportation or assistance are typically designed, controlled and run by non-disabled professionals. These people, however well-intentioned they may be, simply cannot have the insight in our needs, life-styles and aspirations which we have. As a result we see paratransit systems that run Monday through Friday, as if we had no need to leave our homes on weekends. We see personal assistance schemes that provide services only within one building complex or within the political boundaries of our communities, as if we never had the need to leave our homes or cross city limits. If we leave design and control over such services to other people, we should not be surprised, if they come up with solutions which fit the needs of their existing bureaucracies instead of our needs, services which fit their preconceived notion of "what disabled people are like" instead of services which can be vehicles of our emancipation.

We have a choice: we can go on feeling as powerless victims, as victims of other people's insensitivity, lack of understanding, conspiracy or whatever. Or we can choose to feel in control of our life and take charge of it. If we don't want to play the role of the victim, we have to take the initiative in the political and practical work of creating our own services.

Peer support

Independent Living is really basic applied psychology. The most important change we have to make is the change within ourselves. We do not need to wait until other people get around to changing their attitudes towards us. When we look at ourselves differently, other people too will see us in a different light. When we respect ourselves as citizens with equal rights, it will be easier for us to convince others that we indeed have equal rights.

To change one's perception of oneself is difficult. There are times when we need to talk with people we can identify with because they are or have been in a similar situation. The example of such a person is a much more powerful help than the best advice of a non-disabled expert. The Independent Living Movement utilizes this principle in a systematic fashion. We call it peer support. Peer support means to share the fruits of one's experience. It is our foremost educational tool to empower each other by exchanging practical information, personal experiences and insights and by raising our consciousness about our role in society and what it takes to liberate ourselves.

Our organizations will be most effective, if they make the best use of the peer counselling principle. For this reason too we need to have as many disabled people on the staff as possible.

Networking

In providing examples for each other and in sharing our experiences we need each other. We all are in the same situation, we all face oppression in our society. Once we realize this, it is only a small step to see that we have to support each other, that we must band together to fight the system and together make this a better world for all.


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