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VOICE OF SOUL
Back to Community: From Mental Health Institution to Chosen Community - parts a project report
The overall purpose of the reported project is to increase independence (legal and financial) of people with severe long-term psychiatric diagnoses. Thus, this is a rehabilitation project controlled by users/survivors of psychiatry. That kind of self-rehabilitation should cover a wide spectrum of learning and of work: participants need to learn basic social skills (they have forgotten during their carrier as psychiatric patients), they must learn how to survive everyday difficulties in a rapidly changing world without existential safety, how to cope with human emotional and spiritual conflicts relying upon resources existing both inside the individual and in the (narrow and broader) community.
Instead of 'they' it is much more sincere to write 'we', since the leaders of this project are also (ex-)users/survivors of psychiatry who became addicted to the medical establishment and had to learn how to develop their own responsible lives.
Our experience is that we must make up for so much what seems natural for those who have never had close encounter with psychiatry not because we are handicapped, disabled or biochemically ill. Rather we have to make up for lost time we spent with artificial and reduced lives shaped most often by psychiatry itself. Some of us had already had deficiencies in certain social or other skills contributing to our breakdown when we met the psychiatric system. Again the common experience is negative: instead of empowering us psychiatry deepened our hopelessness. Thus, we must recognise that self-rehabilitation means rehabilitation from our restricted roles forced by psychiatry.
More than a hundred fellow users living in social care homes for the mentally ill took part in this project. Many of them are young people (30-40 years old) having spent years in psychiatric wards and then in social care homes. Most of them are under guardianship. The level of their autonomy is tightly limited by legal, social, financial and cultural factors. Although almost all of them expressed their dreams on an independent living on their own (or with their own families), they are very much afraid of leaving the care homes for a few days. They wish to leave those homes and they are aware of their need in intensive support and preparation. For them the project intended to serve the very first steps backwards to the community through organising programmes outside their institutions in conjunction with the local communities.
Some of us need only a job providing reasonable income and then can begin an autonomous life, others require everyday support in human relations, in the 'simplest' activities (shopping, clothing, washing, etc.) which are not simple at all for people who has been living hospitalised lives for decades.
In our project we want to show that 'mentally ill' people can organise, run and control a 'mentally healthy' workplace for their fellows. A place where they can feel safe, they can earn more than in a sheltered workshop, where they are owners rather than 'objects', patients or clients. Where they are the most important people who are motivated to work the best. Where they can learn useful skills and get professional qualification accepted on the open labour market. Where they can find and offer help in self-help groups. Where they are free to ask for psychiatric help if they want to but where they are encouraged to look for other solutions.
Meanwhile we had to understand that we must provide help for each other in all the fields described above, otherwise we fail even in the employment plans. Having a reasonable job is not an end in itself.
More than hundred users involved in this project live in SCHMI. We have been collaborating with nine such institutions. About ninety percent of those participants are under guardianship, most of them are under full guardianship. (Up to the former years it had been a necessary condition to be eligible for admission to SCHMI.) In average they have spent decades in psychiatry. Many of them are suffering from tardive dyskinesia and other side effects of psychiatric treatments. They have no supportive families. (If they had had they could have avoided SCHMI.) Their employment histories (prior to their career in psychiatry) cover a wide range of appointments: from professorship in a university to unqualified auxiliary work. Their education, qualification and work experience do not help them find proper jobs on the labour market sufficient for a living. There is no organised way for them to learn new skills, have new qualifications.
In SCHMI they live in shared bedrooms: in each of the collaborating SCHMI there are a few double rooms, the majority are for more than two persons (up to 15). Private rooms for meeting relatives, friends or spending a night with the beloved are exceptional. Under such circumstances they cannot practise the basic human relationships. Residents' money is handled by the guardians. They buy their coffee and cigarettes in special canteens where they are much cheaper than on the open market. No wonder that residents have no sense of prices and practice in sparing their money.
Many of them work a few hours daily (in some places they are forced to do involuntary work without proper contracts and wages). That work, however, does not improve their chances to get a job outside the institution.
SCHMI are faraway villages. Usually, there is only one place in the community what residents visit regularly: the pub. This means that most residents have lost their contacts in their original communities and have never created new ones in the host villages.
For a long time advocacy had hardly been available. Recently two important reports have been published on human rights violations in SCHMI: one by the Parliamentary Ombudsman of Civil Rights, the other by Mental Disability Rights International (Washington DC). As a result, SCHMI have established Residents' Councils to promote self-advocacy. Our experience is, however, that either the staff are counter interested in a real self-government or they do not know how to empower residents to run responsible councils. Taking into consideration that those residents who are under guardianship have no right to vote either at the national nor at the local elections, most residents are fully excluded from public affairs.
In spite of all the above problems, the leaders of most SCHMI agreed
that there are several residents who could cope with a more independent
living in the community if proper support would be available.
About thirty fellow users receive regular mental health services while living in the community. Most of them joined Voice of Soul Association as members. Almost all of them are either on disability pension or unemployed. Some of them have regular sheltered jobs, either inside MH institutions or in places closely related to MH. Their jobs are unqualified and underpaid. The history of their former employment ranges from scientific researcher to unqualified worker. Many of them have never completed their studies. MH services provided none of them with training towards new qualification fitting in with both the labour market and the users' needs(capabilities.
Although only a very few members of this group are under guardianship,
the typical attitude of their families (parents) is paternalistic and over
caring. They might have difficulties with handling money, establishing
personal relationships etc.
About 15 members of Voice of Soul Association live relatively independent lives, although they also need various forms of support in finding jobs, solving everyday conflicts on their workplace etc.
Before we had applied for this grant we began negotiations with our members involved in the particualr activities in order to identify their needs. That negotiation remained an essential element throughout the project. We used our Empowerment Club for discussions of our projects and we spent a lot of time with those negotiations during our visits to SCHMI. In the latter case sometimes the needs identified by the residents were in contradiction with those of the staff. In this case we gave priority to the residents'needs and acted as a moderator to try to make the staff understood.
. Provided weekly club meetings (4 hours/week) for its members who learned on their own using the audio-visual material provided by Voice of Soul free of charge. Each member had the opportunity for a weekly individual consultation and could use our library consisting of more than 200 books, dozens of audio cassettes and multimedia CD ROMs. Since September a multimedia lab has been available for each member. In October a new local group was established by our members living in a long term hospital unit. The average number of members participating at the club meetings was 11 (and 3 in the hospital unit), all in all 25 members took part in the work of this club. Three members were responsible for the beginners, pre-intermediate and intermediate students resp. Linguistic and didactic supervision was provided by a volunteer, a professor from Calvinist University of Budapest. This activity has been contracted by the Employment Committee of the City Council.
. Provided weekly club meetings (3 hours/week) and individual consultations for its members. Since September a new multimedia Pentium PC configuration has been available. In October we installed our old computer configuration in a building of a Club for the Elderly (run by the local government, that Club served a place for our new Empowerment Club) providing an opportunity for each member to practise and extend their knowledge. That computer is available every workday from 8 am till 4 p.m. 10-15 members attended the club regularly. Total membership was 30. This club was supervised by a volunteer, a teacher of computer skills from a secondary school specialised in computer sciences. This activity has been contracted by the Employment Committee of the City Council.
Three-week intensive computer course. In the first three weeks of July 1997 Voice of Soul organised an intensive course on Windows, word processing and Microsoft Excel. Tutorials were provided between 9 am and 1 p.m. by our supervisor and by a survivor of mental health services, while from 2 p.m. till 6 p.m. participants could practise on their own. 14 members took part in this training.
10 members are preparing for the ECDL exams. A qualified member teaches 3 other members, while they train the others. We organised an Internet course in conjuction with a company since we had no Internet facility.
15-35 members visited our weekly empowerment club. Total number of users/survivors
attending this club was about 70. In October this club moved to a new place,
we signed a contract with the local government and we could use the building
of one of their Clubs for the Elderly.
. We have contacted 13 social care homes through telephone, letter and personal meetings. Social care homes for the mentally ill are in a difficult position: two important human rights reports revealed severe violations of basic personality rights in them (one of the reports was written by the Hungarian Ombudsman of Human Rights Issues, the other by Mental Disability Rights International). In that atmosphere, leaders of these institutions are rather suspicious.
. We started negotiations with the leadership of a social care home. Next year this process will be continued and the leadership of the village will also be involved. The aim is to develop a model project: some inhabitants leave the social care home and get a rent and a job in the village.
. Together with our Green Club, Voice of Soul organised a competition in literature for inhabitants of social care home. Unfortunately we announced the competition in our first circular, before telephone and personal communication. Then most social care homes were suspicious about our purpose, only one of them took part in the project. We have understood that much more personal contacts are needed to overcome the barriers.
(1998). Learning from our mistakes we prepared our second cultural competition more carefully. Nine SCHMI participated in that event between 1 May and 30 June.
. 40 residents of a SCHMI (winners of the competition) visited Budapest. Beside the sightseeing and lunch they met members of Voice of Soul and negotiated how Voice of Soul can help with empowering their Residents' Council.
. We paid about ten visits in 4 SCHMI. We met both staff and user representatives (both separately and together). We helped identify several specific problems which look solvable. During those visits we started developing local small scale employment projects together with staff and users. In two places we gave training to the members of the Residents' Councils.
. We organised a meeting with user and staff representatives from 4 SCHMI in our headquarters on 29 June 1998. The objective was to identify specific small scale projects in each of the SCHMI present. The meeting also served as an empowerment event for the user representatives.
A Commodore C+4 configuration (with printer, monitor, floppy drive and joysticks) was set up in a SCHMI with basic word processor, table editor, data base and presentation softwares and books for remote study. Our central computer club corresponds with members from SCHMI answering their questions, suggesting activities, etc.
. New green clubs have been established in SCHMI. Our experience is that this clubs are good starts for local user only activities in institutions. (Staff are not always happy with "empowerment" and "advocay" groups, being afraid of hostility etc.) On the other hand, they are much more ready to accept a user only group if they do "neutral" activities like environmental protection. At the same time, hospitalised members can learn a lot about organising and running groups, solving personal conflicts on their own.
We helped 11 members find jobs on the open labour market and prepare for the application. Occupations ranged from actor in theatre (a member who worked as a professional actor before he spent years in a hospital, and now we helped him go back to the theatre), through secretary in a foundation for mentally retarded, to public opinion poll conductor. 6 of them still works, one lost her job because of the lack of money and four of them felt after the first weeks that the job was not for them. More support is needed to survive the everyday conflicts in the workplace. We collaborated with the Awakenings Foundation, Motivation Foundation (an NGO to help employment of people with movement disabilities) and the Sun Family Support Service.
We had five theatre performances (four times Oscar Wilde's Selfish Giant, once Boguslaw Schaeffer's Awans, the latter was performed in our own translation together with fellow survivors from Krakow), one photo exhibition and we have published our drama translation in form of a booklet. All these programmes were open for the broad public and had good press coverage. Most recently we have been invited to participate in the biggest cultural event of the most populous district of Budapest.
English and Computer Clubs ran according to the plans, though the total number of their membership was slightly bigger than planned (25 and 30 respectively compared with 20 and 20). The purchase of a multimedia computer configuration (from Hamlet grant) made our work much more efficient. One more English language exam has been passed and four members sat for ECDL exams in the first three modules (of the total seven). We believe it is a great result that City Council made a contract with Voice of Soul on "Undertaking obligations of public interest".
Bookkeepers' and Mathematics Clubs were not planned, but the needs of the users of the project forced us to organise them (having a job on the open labour market is impossible without secondary school diploma; our coop needs reliable bookkeepers), and they belong to the 'no cost' activities.
The three-week intensive computer course proved a very efficient way of training and the number of participants was bigger than planned.
The ECDL computer course has resulted in a lively self-help activity: since May 5-10 members organise their learning and teaching, consultations, computer practice etc. on their own.
We planned to contact 8 social care homes for mentally ill. In fact, we made contacts with 50 such institutions. In the first half of the project only one SCHMI responded, while in the second run 13 of the contacted 50 responded and 9 of them participated in our cultural, training and empowerment project. In the beginning the barriers between the leaderships of these care homes and us were unexpectedly high (this, in part, can be a consequence of the scandals about the human rights issues in them), much more personal contacts were needed to establish working partnership. In one social care home (in Tápiógyörgye) we succeeded in starting negotiations about a joint project helping some people leave the care home for the village and have a living there. In another SCHMI we organised exhibitions in conjunction with local users, staff and authorities from the host village. We have found users as contact persons in 5 social care homes all of them are active in the local Residents' Councils.
We planned to help 10 members find non-therapeutic, real jobs on the open labour market. Actually 11 persons found jobs on the open labour market, 6 of them still works. Two members left their therapeutic work for regular job, one left his regular job in a sheltered workplace for an enterprise. All in all 6 persons were employed by Voice of Soul and its coop (partly from this grant and partly with the help of matching sponsors). Nevertheless, it is too early to draw conclusions; in our project proposal we gave a criteria of at least six months continuous work in a regular job.
We had five theatre performances. Together with Braterstwo Serc we have
translated a contemporary Polish drama published it and had a photo exhibition.
About 400 people from the 'normal' community of Budapest (and its region)
were interested in our drama performances. Several newspapers, a weekly
magazine and two radio channels broadcast about our work.
Voice of Soul Association
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