Zoltán, György and József live in a downtown flat in Tapolca, Hungary. A perfunctory look would reveal nothing strange about their life: they wake up early, have breakfast, prepare sandwiches for lunch, then go to work, meet friends, watch TV, and hang out on Facebook. Two of them have moderate, one mild disabilities, though the only effect it has on their everyday life is that they need more help than the average in activities such as their weekly budgeting, or filling in an official form. Two years ago they were living in a residential institution that accommodates two hundred people, like the twenty thousand other intellectually challenged people in Hungary. These three are the exception, who can live independent, ordinary lives.
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The cucumber salad is lovely. I have only one problem while eating: I cannot decide which is better, the meat or the cucumber salad. We are having lunch in the trendy downtown flat of György, Zoltán and József in Tapolca. They cooked the lunch in the morning, before work. They want to cook mushroom stew with dumplings for the weekend – that is the subject of the conversation during the meal. It is an average Thursday, with an above average lunch. There is nothing unusual in the lives of our hosts either: they get up early like us, cook something or prepare sandwiches, go to work, do the shopping in the supermarket after work, then hang out together, or with their friends or lovers, go to the gym, or just watch TV.
Two of the three have a moderate intellectual disability, one mild, but they are not different from the rest of society in any other aspect. They were living in a residential institution in Lesencetomaj two years ago in much more restricted and isolated circumstances, under a strict daily routine, together with two hundred other intellectually disabled people. (Photo by Szabolcs Barakonyi / Index)
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Replacement of institutions by community-based alternatives has been implemented during the last few decades in Europe and the Western world, where disabled people are moved from isolated residential mass institutions on the outskirts of towns into independent apartments or smaller group homes housing twenty five people at most (but nowadays rather five or six), so they can live their lives as equal members of society with as many similar rights as possible. The last time this process became the focus of public interest in Hungary was when members of the local government in Szilvásvárad decided unanimously that they would not allow the settlement of disabled people who were to move into their town from a nearby residential institution. The following scandal made them change their minds somewhat, even though they only gave permission for half the number of housings.
The key principle of the community based living solution is to provide as independent a life as possible for disabled people and to support their individual decisions. The lives of György, József and Zoltán was changed by ÉFOÉSZ (Hungarian Association for Persons with Intellectual Disability) in 2011, when they were moved to a downtown apartment in Tapolca from the nearby village of Lesencetomaj. They have been receiving continuous daily support, for example in their weekly shopping, the preparation of difficult meals, or anything else they needed. Apart from some practical lifestyle help, these men manage everything themselves in the shared apartment they received from Tapolca. (Photo by Szabolcs Barakonyi / Index)
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“Nobody in my family could use sign language, it was difficult at home. I was alone a lot, just sitting, or watching TV. After finishing school, my grandfather took me in. I liked it there a lot, he spoke slowly, and he was very patient. He loved me. We went to pick mushrooms many times” says József with the help of a sign interpreter. He is 40, and lives with deafness and mild intellectual disability. He was born into a hearing family in Ajka. He was diagnosed with deafness at the age of one year, and went to a school for deaf and hearing impaired children in Sopron until the age of 19. He became a resident in the Lesencetomaj institution in 2008, after his grandfather died. He worked in the ceramics workshop of the institution until this November, making pottery products for the market. At the end of our visit he surprises me with a beautiful ceramic rose. He is also surprised with a cake made by his flatmates, because he celebrates his birthday the next day. He has taught a few basic signs to Zoltán and György, who always speak to him slowly and with careful articulation. Once it was György who interpreted his words for a film crew visiting them, since they had no sign interpreter.
He used to live in a room for six in the institute, so he did not get used to having his own room easily. “The nights were the strangest, because though I have no hearing, I can sense movement, stamping, vibration. And while I was used to it there living with five other people in a room, I do want to stay here now. I like it here very much.” (Photo by Szabolcs Barakonyi / Index)
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György, Zoltán and József were chosen from the eleven people who applied from the two hundred residents of the institution. Their moving was preceded by several years of preparatory work. The eleven applicants had 120 hours of training, and had to pass an examination in the most basic practical activities of everyday life. They had to prove their knowledge of money handling, paying bills, opening a bank account, managing conflicts, as well as handling a washing machine or cooking. Practical training took place in the apartment in Tapolca, where the future inhabitants could plan which room they would get, and what colours the walls should be. They have been living among bright red, lemon yellow and sky-blue walls. They divide the chores each morning. The day of our visit it was György’s turn to get up at dawn, to bring fresh rolls, to prepare the sandwiches for lunch. Zoltán took out the trash, and József made coffee. (Photo by Szabolcs Barakonyi / Index)
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Zoltán is 35, and he had been living in different institutions since he was six. He has a moderate intellectual disability, and he is enthusiastic about Nohab engines. “I was a kid when we were walking in Csopak. The railway barrier was closed and a Nohab appeared. I didn’t know its name, but I asked the stationmaster, and he said it was a Nohab made in Sweden. It was nicknamed Snubby” he explains keenly. He is interested in everything related to Nohab engines, buys each issue of the railway magazine Indóház, and he is an active member of the Nohab forum of Index. He downloaded the engine pictures decorating the walls of his room from this forum. He knows the histories of all the twenty Nohab engines in Hungary, and the only thing he regrets is that thirteen of them have been withdrawn from service.
He knows Cecilía, his girlfriend for ten years, from the foster home where he grew up. He never forgets dates and appointments, and he is passionate about his work. He weaves carpets in the workshop of the Lesencetomaj institution. He commutes each morning with Tünde who attends school there, and they converse all through the 15 minute bus ride. Though he could have worked in Tapolca, he decided – unlike his flatmates – to go back to work in the institution, such is his devotion for carpet weaving. He chooses the colours, and makes tasteful pieces with unbelievable fervour. (Photo by Szabolcs Barakonyi / Index)
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The premises of the Lesencetomaj institute used to belong to different noble families. The mansion was built in 1732, and it served originally as the hunting-seat of the Nedeczky family. Later it was bought by a Czech earl, then by the Festetics-Károlyi family. In the 1950s it was turned into a social institution. At first the residents of the poorhouse and nursing home in Tapolca were moved here. Then in the 1980s it became an institution for disabled people and severe psychiatric patients. Today it is inhabited by 140 intellectually disabled people and 56 psychiatric patients. (Photo by Szabolcs Barakonyi / Index)
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The former home of György, Zoltán and József, the Lesencetomaj institution, has three buildings. The older part of the main building is in worse condition that the rest, and here live the most severe cases in rooms containing six to eight beds. However, the institution does its best to provide an open and normal life for most of its residents, within the possibilities of such a huge institution. For that purpose, a modern group home has been operating within the institution for ten years, where the residents live in rooms with two to four beds, and the interior looks more like a real home than a hospital. György and Zoltán used to live here in the same room. Disabled people live here as freely as possible, and they can make independent decisions, but they still have to keep the daily routine. This home might look like an apartment, but it is in the middle of the institution, and cooking and shopping is taken care of for them by others.
György, Zoltán and József were so used to living with others, that after moving into the apartment in Tapolca, they slept in the same room for months. They might have decided which room belongs to whom, and what colours the furniture and the walls should be in their rooms, but still they moved their beds into the largest room, and slept there for half a year. Then they decided to try living separately, and they have been living in their own rooms for the last year and a half. (Photo by Szabolcs Barakonyi / Index)
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György is 33, he is a gardener and an animal handler, with ten years of school behind him. “Once I could have worked with a groom, but the boss wanted more and more documents. All my papers were in order, and my qualifications were also good, but he still didn’t find me suitable” he says. He has four sisters, and he grew up since the age of four with Zoltán, in a foster home in Gic. He is the one in the middle, on the right side of the picture, and next to him is Henrietta, his girlfriend. They met this summer in a camp organized for disabled people in Tiszaug, and they work together in his new workplace.
He was 13 when his father wanted to take him home, but he didn’t want to go, because he thought that his family wanted him only for the nursing stipend. He is a passionate football player, and he and his flatmates are members of the local integrated theatre group. They have a rehearsal each week. Their last performance was The Attic in the Tapolca Musical Stage, produced by disabled and normal artists, which was a huge success. (Photo by Szabolcs Barakonyi / Index)
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The three men had their last workday on 30th October in Lesencetomaj. Some of the residents are employed by Fővárosi Kézműipari Kht. Some of them shred foam, some weave or sew, and some makes pottery. The residents work four hours from 8 in the morning, and earn 40 thousand forints, but 30 percent of their income goes to the institution for living costs. However, those who cannot pay have the same level of service as the paying residents. Many work around the mansion, landscaping, gardening, and helping in the kitchen or in the laundry. They used to have work outside the institution, for example picking apples in the summer, but these kinds of work opportunities are rare. The youngest resident is 20, the oldest 83. The 106-year-old mother of the latter phones regularly and her only request to the leader of the institution was that her son be called Janika, and that he should always wear a trapper hat in cold weather.
Zoltán – on the right side of the picture – is making a red and white carpet in railway barrier style. He was also offered to work at the Életlehetőség social day-care institution in Tapolca from this November, instead in Lesencetomaj. He thought it over, went to the new place on the first day, and then returned to Lesencetomaj the next day. “My favourite material is drab wool. It would be strange if I didn’t go to Tomaj, and didn’t make carpets” he says, while inserting narrow strips of rags between the warps of the loom with professional movements. Popular kitsch music roars, this is where Zoli feels at home.
Horváthné Somogyi Ildikó, leader of Veszprém County ÉFOÉSZ, accepted Zoltán’s decision; she does not want to rush anything in the three men’s lives. “Two opposite principles fight here: on the one hand, we would like the three of them to become independent of the institution, but on the other hand, we want to support their individual decisions. In Zotya’s case, the latter is the stronger goal. If he decides later to work in Tapolca, we will help him find a job” says the specialist. (Photo by Szabolcs Barakonyi / Index)
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Until this November Zoltán’s flatmates, György and József also went back to Lesencetomaj to work, but unlike Zoltán, they decided to find a job in Tapolca. For a month now they have been living and working in Tapolca, but they say that they want to play football back on the grounds of the institution. They work now with airbag springs, cutting them to size. (Photo by Szabolcs Barakonyi / Index)
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Horváthné Somogyi Ildikó, leader of the Veszprém County ÉFOÉSZ, says the reason they managed to implement the experimental moving program successfully was the receptiveness of the leadership and the residents of the town towards disabled people. The ÉFOÉSZ has organized a wide range of services for local people with disabilities for twenty years. The Életlehetőség (life opportunity) day-care institution provides meals, as well as work. “Locals have seen for years that disabled people go to work and live their lives like everyone else.” (Photo by Szabolcs Barakonyi / Index)
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In the afternoon, the three men have routine medical checkups. György has suspicious heart noises, so further examinations are prescribed. After the hospital they go to the supermarket together. (Photo by Szabolcs Barakonyi / Index)
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A 2011 survey by the Ministry of National Resources found that approximately twenty thousand disabled people live in residential mass institutes in Hungary. The majority of these people are not ill, just need more help than average in some areas of everyday life. Zoltán, for example, had to learn not to spend all his money in the first week of the month, and György realised after an accident at the hairdresser that he must bear the consequences of asking the hairdresser to shave his head.
Most of the residents of mass institutions do need some help, but it is the unanimous view of the profession that support is more effective, and independent life is more easily achieved at the level of the individual or the small group than in large mass institutions. The European Disability Strategy also supports this principle, and the European Commission also prescribes the total abandonment of mass institutions, and providing group homes or even independent living for their residents, naturally with the necessary support with regard to their situation and condition. (Photo by Szabolcs Barakonyi / Index)
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The Hungarian government allocated six billion forints in 2012 for the closing of six large institution in the framework of the New Széchenyi Plan Community Infrastructure Operative Programme, moreover, the whole amount provided by the EU can be tendered without the use of local funds. With this tender, the government aimed to move at least 1500 disabled and psychiatric patients from institutions until 31 December 2013. (Photo by Szabolcs Barakonyi / Index)
The original report was published in index.hu (03.12.2013).
Translated by György Vantulek