The role of the Muscular Dystrophy Association in the creation of a barrier-free environment, by Gordana Rajkov

Report of the CIB Expert Seminar on Building Non-Handicapping Environments, Budapest 1991

The role of the Muscular Dystrophy Association in the creation of a barrier-free environment

Gordana Rajkov, Savez Distroficara Jugoslavije, Yugoslavia

This paper will present some of the experience of The Muscular Dystrophy Association in the work on accessibility, from the user's point of view. The Muscular Dystrophy Association is one of the organizations of disabled persons bringing together people with muscular dystrophy and allied neuromuscular diseases which have, as a final consequence, a severe physical disability. One of the main activities in our work is the elimination of architectural barriers. This is carried out in cooperation with other organizations of physically disabled people.

In the process of creating an accessible environment, organizations of disabled persons have one of the most important roles. Why? Imagine our organizations as a tree. The trunk represents the organization itself, the roots are the members and/or the cause we work for. Branches and leaves of the tree are the rest of the world, to whom we have to present the needs of our members in such a way that they become aware of all our problems. They must be relayed to government departments, professionals, the press, and to the public at large.

Since accessibility is a vital issue for persons with disabilities, it has to be one of the absolute priorities in the work of their associations too. The turning point in the attitudes of experts and scientists in our country concerning the problem of accessibility and the needs of disabled people was the Meeting on Architectural Barriers, organized by several associations of disabled persons in Zagreb, in 1977. The wheel was started in motion then. The proceedings of the meeting, which we published later with all presentations, conclusions, and particularly proposals for minimum standards from the point of view of disabled persons, have been of great significance.

The next step was to inform the public about the problem of barriers. A campaign was started through media and public relations, for we believe that psychological barriers caused by prejudices are in the core of all other barriers (social, physical, functional, etc.). Of course, it takes time to change social attitudes. First, people must be aware of your existence, otherwise the rest will be of no importance. Secondly, it takes time to create a picture in the minds of people about the real needs of disabled persons. Thirdly, your surrounding has to be convinced of the importance of those changes. Therefore, the process of changing attitudes consists of four steps: Awareness - Comprehension - Conviction - Action.

Continuing our action, we have addressed ourselves to the Federal Government and to the ministries of civil engineering, housing and public works of all Yugoslav republics, requesting changes in building regulations. In our requests, we explained the problems, defined our needs, provided information on positive experience from other countries, and submitted concrete proposals for new regulations. Certainly, this whole work would be impossible without the great assistance of architects, civil engineers and other experts collaborating with our organizations. As a result of all these efforts, the first legislation concerning accessibility appeared in Yugoslavia. I do not want to analyze it here, but will give offer a brief review.

Access legislation in Yugoslavia today exists on two levels: federal and republic. The Federal Bureau of Standards established a Working Group in 1985/86 with a task to make drafts of the first Yugoslav standards concerning spatial needs of disabled persons. Our Association was represented too in this Working Group. Finally, the first five Yugoslav standards on spatial needs of disabled persons in buildings and the environment were adopted, containing the following regulations for flat surface circulation areas:

JUS U.A9. 201 - Access and passing space
JUS U.A9. 202 - Pedestrian crossings zones
JUS U.A9. 203 - Slope and height of curbstones
JUS U.A9. 204 - Parking places
JUS U.A9. 205 - Wheelchair turning places.

The next eleven standards - JUS U.A9. 206 to JUS U.A9. 216 were adopted at the beginning of 1990, and they contain regulations concerning accessible elements and spaces such as ramps (shapes and size), entrance to buildings and apartment housing, lobbies, maneuvering clearance at doors, etc. All of these sixteen standards are in accordance with the International Standard Organization Document, ISO/TR 9527/1987.

On republican levels, specific access regulations are contained in laws on spatial planning and land use, which were enacted in most of the Yugoslav republics during the 1980's. These laws stipulate detailed legislation on 'urban and technical conditions and standards preventing the creation of architectural and spatial barriers'.

In our organizations, we had believed that the passing of access legislation would bring about immediate changes in building practice. Unfortunately, we were soon to realize that there is a long way from passing regulations to their implementation in practice. Therefore we have decided to start a new campaign to speed up and enforce the implementation of legal regulations.

On the proposal of organizations of disabled persons, the Federal Committee of Health and Social Welfare adopted 'The Declaration on Building Environments Accessible to All' in 1989, and proclaimed that year as the 'Year of Fighting Architectural, Technical and Transportation Barriers' in Yugoslavia. Appeals were sent to all planners, builders and constructors to contribute to this goal. For that purpose, our associations had published a special leaflet too, informing the public about the problem and offering possible solutions.

Simultaneously, our organizations in various republics have prepared plans for their activities. Rather good results have been achieved in some of them, including Slovenia, Croatia and Serbia.

I would like now, as an example, to tell you about some of the experience from the Republic of Bosnia-Herzegovina. The main idea was to concentrate our efforts on the local level. We found a very good way to get our message across is to organize meetings on various professional levels in different cities. So we organized 'Round Tables on Architectural Barriers' in five regional centers (Zenica, Bania Luka, Doboi, Sarajevo and Tuzla) during two years (1989-90). Invited participants were people engaged in the decision making process, such as:

local government,
municipal councils,
communal and housing committees,
town planning and building committees,
planning offices,
architects, town planners, constructors, designers,
mass media (press, radio and television).

These Round Tables always started with an introductory lecture defining the main problems and providing general information on the existing situation and current regulations concerning accessibility. After the introduction, a film made in that town was shown, with a person moving around in a wheelchair, and presenting the situation of accessibility in the town. (which was disastrous in all five towns.) The film is very important for it can accomplish more than a good speaker and is more convincing.

Following the film, a discussion took place on all the problems observed and how to solve them. The meetings usually ended with the establishment of a working group with the task to prepare short and long-term action plans for the elimination of barriers. The most impressive thing in all these meetings was the fact that people were absolutely surprised in watching the film, proving once again, unfortunately, that a general awareness of the problem does not exist. Of course, this is just the beginning and the activity should be continued. Nevertheless, I do hope that it can be useful as one of the examples of how organizations of disabled persons could influence, initiate and enforce the process of removing barriers.

In our country there is not an official regulatory agency which could enforce legislation concerning accessibility and particularly its implementation. This role has been taken over by organizations of disabled persons with the help of some professionals. Thus, the role of this organization in creating a barrier-free world is of the greatest significance, as it was stressed in the Resolution adopted by the CIB W84 in Prague, in 1987. Unfortunately, our organizations are not always able to accomplish all these activities for numerous reasons. To promote the efficiency of the environment improvement process we must:

be more aggressive;
establish direct contacts with various decision makers;
engage more voluntary workers and collaborators;
find more money;
put greater emphasis on tailoring our information to suit various groups that we want to reach (professionals, politicians, citizens' committees, etc.);
have our own public relations officers;
and last, but not least, secure continuous presence in media.

In spite of the present situation in our country, it is hoped our organizations will be able to fulfil some of these tasks in the future. 'Everybody is different - nobody is perfect!' Being disabled is not different from any other sort of difference. I believe that one day the world will be designed in such a way that we could prove this.

References:

"The role of Muscular Dystrophy Associations as active and influential consumer organizations", EAMDA Seminar Report, Arhus, 1985.
Rajkov G. "Mesto i uloga organizacije distroficara u resavanju aktuelnog polozaja kod neuromisicnih bolesti", Opatija, 1986.
Arsic P. "Prostorne i druge prepreke kao smetnja socijalnoj integraciji", Beograd, 1986.
Rajkov G. "Izgradnja zivotne sredine bez prepreka", Sarajevo, 1990.
Bosak S./Drzanic B. "Problematika eliminisanja arhitektonskih barijera", Malinskat 1990.
"Jugoslovenski standardi za prostorne potrebe invalida u zgradama i okolini", Sluzbeni list SFRJ 18/88, 3/90, Beograd 1988, 1990.

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