Editorial note: The language, opinions and sentiments expressed in this article are entirely those of the featured organization reflecting the social environment in which they operate and are not necessarily supported by the Institute on Independent Living
"The most important moment of your life is the present moment, the most important person is the one you are speaking with, and the most important activity is love."
We created the Disabled Peoples' Independent Life Association in 1995 along the lines established by the American Independent Living Groups. We are forty members. All of us are wheelchair users and 70% of us live with our own families in the vicinity of Budapest. It is difficult for us to do any work together, because we can't easily get transport and we do not have funds.
The first activity of our association began with was to work to eliminate the most common obstacles to wheelchairs on the road, in public buildings, and, of course, within the public transport system. To achieve this we have made contacts with the municipalities of every district in Budapest, personally or in writing.
Another of the association's activities is to raise awareness about disability. This activity is aimed at the young; we visit schools upon appointment to talk about accidents. The children are very quick to realise how easy it is to fall out of a tree or to slip on a flight of stairs and break your back on a wet day which is how some of us got into the wheelchair for life. We tell them about our problems when facing the curbs, the stairs, and the public transport system. They are very quick to see how they should approach us wheelchair users, to accept our being different and to offer the help we need. Of course, we do need help, and of course we do not want to live a life apart. We want to study, to have a job, to raise a family, and to get around. We believe these talks help to break down the walls that separate wheelchair users from the non-disabled, and to make people understand how they can contribute to our integration into society.
Counselling is another service offered by the Disabled Peoples' Living Association in Budapest. The counselling we do is rather similar to what is know as Peer Counselling in America and Scandinavia. Peer Counselling started in America, first for pregnant women, then for black, and later for disabled people. The Peer Counsellor first listens to the counsellee's problems. He then proposes a number of alternatives which could lead to practicable solutions for the counsellee to assist him to make his own individual choice.
In our association we have a group of twelve that offers counselling. We call this counselling service the "Ferryman's service". The term 'Ferryman' is very expressive in Hungarian for what we are trying to accomplish: we want to help people to land 'on the other side of the river' rather than be stuck on 'the side' where they feel helpless and useless. All twelve counsellors are wheelchair users, and have been prepared and instructed by professionals specialised in rehabilitation.
When a person becomes disabled for life through an accident or illness and becomes a wheelchair user he finds himself in a completely new situation. He needs help on how to confront and master his new situation. We, who have gone through a similar process know through experience that it is easier to take advice from a person who has gone through a similar experience because that person, or peer, knows what that experience is like and how to suggest alternatives that can make life a workable proposition once again. We can advise him on practical things and matters of the spirit as well. He need to see how we handled our own problems which were essentially similar to his.
Our contribution does not replace that of the doctors, nurses. and physiotherapists; they have their own important roll in the rehabilitation process. A well-trained rehabilitation expert may have all the knowledge in the world but he may not be able to pass it on, to get the message home, because of an almost complete refusal at the receiving end. The best persons to offer Peer Counselling is, of course, someone who has gone through the same experience themselves.
Three of us in the Ferryman service counselling group function as liaison officers and are the contact people who are instructed by the hospital staff about who is in need of our assistance. The hospital's physiotherapists and psychotherapists know the new patients and the members of our group so they can decide which member of our group is best suited for the individual patient. From time to time we have a meeting to discuss our results and observations. Upon request we are, of course, ready to visit people in their homes when they are discharged from hospital, to try and help them to manage their new life style. We also try to talk to their parents and relatives, to make it easier for them to accept the irreversible.
This Ferryman service has been started in Budapest at the Rehabilitation Department of the Hungarian Railway's Hospital and in four wards of the National Medical Rehabilitation Institute.
Magdolna Jelli president Hegyes Ferenc