Call to competent bodies;

For a decent life

 

Young disabled persons ward (13 rooms) operates under the auspices of Bežigrad Retirement Home in Ljubljana, which does not satisfy the necessary criteria for such a ward (care, rules of residents and other necessary services) and was never meant to differ either formally or organisationally from other wards in the home. From the vantage point of human rights, this is unacceptable and deplorable because young people with their whole lives in front of them, who are forced to live in a retirement home only because of their disability, are equated to aged people. In practice the institution's management adhered to the main purpose of founding this ward, which was independent, active, and creative living of people who need 24-hour care, throughout the thirty-five years of its existence until last December.

We are a motley crew of residents, coming from all walks of life, of various age and types of disability, however, none of us have reached the age that categorizes people as elderly. There are many creative days ahead of us, however, various problems have begun to compromise them, which threatens the very soul and nature of our ward. One can live a decent and rich life only if certain basic conditions are met. The largest role is played by the happiness of users both on a psychological and physical level, as the latter has a direct influence on one's health, preservation of which is the main mission of the healthcare system. Before the latest changes, we were able to control our lives. We were allowed to make our own schedules of when we would like to get up in the morning, go to bed at night, how we would bathe and other aspects of everyday life. We also had our say in selection of nurses, working on our ward. In other words we were able to make decisions about our lives as individuals and as a group of thirteen people. We had the option of extending our evening visits beyond the time specified in the rules of residents for other parts of the retirement home.

Last August our retirement home got new Head of Medical Care who replaced our relaxed schedule with her own that came into effect in the beginning of this year. Our ward's schedule is now completely equal to the timetable of every other nursing ward in the home. Our lives were turned upside down and became a living hell. Since the 1st January 2014 we have had no influence on any segment of our lives. Our basic living needs have been completely devalued and we have had no influence or ability to express our will on how care is provided for us. We need to get up whenever a nurse comes into our rooms in the morning. Those of us who need aid with bowel movement or urination get woken up at 5.30 a.m. without regard to our individual metabolisms. We are also forced to wait in our beds until we are finished with our physiological needs. We need to wait in our beds when we take our baths as well. According to the new schedule we bathe only from 10.25 a.m. We are supposed to be served our breakfasts in our beds as well, although most of us cannot eat lying on the bed, even if the head of the bed is raised. We all have to bathe in the same way, on a bathing table, although this does not suit most of us. Last year we were able to choose between a bathing chair and a bathing table. The time when we have to go to bed is also tightly regulated. We all have to be in our beds by 11 p. m. Also specified is the time when we are turned at night, although most of us would need to be turned more often, because we are completely motionless and often wait for help in pain. Currently we also have no influence on the choice of the nurses working on our ward. New rules dictate that we can only use a call device in case of physiological needs and worsening medical condition. In doing so

they turned us into people in vegetative state. Because to live creatively and meaningfully in any way we need someone else to help us, which the rules described above make impossible.

In short, the problems we described undermine our right to control our lives. They also point to the truth that the current management does not understand the specificity of our ward which was acknowledged by previous managements of our institution. What we are talking about here is human dimension of awareness that disabled people have a right to independent living with assistance of other people who replace our hands and legs. The current management is unable to make such a simple intellectual step. They have taken our right to make decisions for us on how we should live away from us. But our lives are not owned by any institution or manager. People have always been fighting against any kind of dominance over them, which is in essence psychical and emotional discrimination that stretches over all borders of human dignity and breaches all positive law related to disability. Although the management later revised our internal timetables on the initiative of Ministry of Labour, Family, Social Affairs and Equal Opportunities after we filed a complaint, and partially complied with our demands of individual plans, the core of the problem remains unsolved. All the changes were made within the framework of the new timetable which is unacceptable to us. Above all, it is unacceptable that our specific needs with respect to care and basic everyday chores are not even considered, with the absurd excuse that these "expert approaches" are taken for our own safety and the safety of the staff. Of course this calls into question the expertise and safety of the last 35 years in our retirement home. New head of medical department treats us as patients, which, of course, we are not. Just because we are on a wheelchair we need not be treated only through the severely limiting medical aspect, which completely dehumanizes us and demeans us into an object of treatment as if we didn't have our own will and capability of making decisions for ourselves. We have had several meetings about this issue at the home, even with the representatives of the Ministry, however, current practice continues to this day to our deep sorrow and desperation. We also sent a letter to the office of the ombudswoman but we only received a reply that the problem is being resolved. We do not see or feel that this is the case at all, what is worse, we are being exposed to ever increasing pressures.

Accordingly we demand legal reorganization of the status of our ward in such a way that we will have the option and the right to live our lives according to our own needs and wishes as it was possible informally until the 31st December last year. We also demand changes that make it impossible to enforce any kind of organisational change on our ward without our participation.

Ignoring our demands would mean that our society has turned us into patients and shut us off into a classic medical ward, which is absurd and completely unacceptable.

Composed in the name of the residents by:

Aleš Klemenčič

Valbon Siljaj