The doors of psychoneurological institutions are usually closed for strangers. We managed to talk with several women (for ethical reasons, names are not called) to find out what they lack and what they dream to change in their lives.
Both residents of the institution are about 50 years old, they have spent most of their life in this closed institution. They are deprived of legal capacity, but they say quite reasonable things. They say that they were deprived of the right to make decisions for their lives automatically, without scrupulous research and expertise. And it is very sad, because they have their desires, interests, hobbies ...
"I remember how I was diagnosed with “mental retardation”. I never had such a thing in my medical history. I have cerebral palsy, but I'm thinking normally. When I was recognized as an “abnormal person” before settling in an institution, I immediately called my mother with a grievance, saying, how she could let this happen. Mom was also in shock, - says one of the women.
And now they are also "automatically" treated in the institution. Employees do not always respond to personal requests, considering these desires as momentary whims of "abnormal" people.
- Conditions in the institution do not suit me. I want to live a normal life. Like all of you, - she says. - You can have a drink or a smoke. And do strange things, if you want. But not me…
They say that they would like to study very much, but so far there is an opportunity only for self-education. For example, listen to audiobooks, watch movies. They can not read and write – parents tried to teach them in their childhood, but after getting into the institution those bits of knowledge have been lost ...
Women admit that today they would not refuse to study with teachers, more often go out "to people" - to a concert or theater. It does not always work. But life becomes brighter when "volunteers come", "friends come from church" or the institution is visited by celebrities. The women have as it seems very simple desires, for example, live in a room with "those with whom you can talk." There is not enough communication, because often a room is shared by people with completely different diagnoses.
They say that they are not always happy with their food - they eat without variety, that's why parcels from their relatives are very useful. The women don’t like the "regime" very much as well as life on schedule.
- We are here like in a correctional labour colony, and sometimes it seems that like in prison. We want to feel more freedom, but for now it only remains to be afraid of the authorities, - the friends say unanimously.
If there were an opportunity, the residents of the institution would return home. But it does not work out yet. One of them has nowhere to go - parents are gone long ago. Another dreams of an independent life, but her parents are against it. They are convinced: they do not have the strength to constantly look after the adult child, the social services should not be relied on, and she is not able to live alone with such a diagnosis.
Commentary of a specialist
Sergey Drozdovsky, Director of the Office for the Rights of Persons with Disabilities:
- Each of their stories is a vivid evidence that it is impossible to reduce the life of a person with a disability to surviving their days, to diagnosing and fighting the disease, to some absolutely basic things like "eat-drink-get dressed". In fact, the life of an individual is very diverse and requires the satisfaction of all needs. First of all, people need human communication. And there is a problem with this in an institution.
The second one - new information, learning new things, a new life experience. And believe me: the issue is not in books, TV or the Internet, but in experience that all we get. We do not notice and do not appreciate it, because it is natural in everyday life. As soon as barriers appear in the form of walls, in the form of impossibility to exit without someone's assistance, we start to value these little things.
When a person says that he would not mind smoking or to do something else, it may seem strange and even absurd to many people. However, this is a very clear indicator that a person in an institution remains an ordinary person with his desires and weaknesses, but we are not ready to see it in them. This is the worst thing. We, as a society, are absolutely not ready to accept and recognize the right of a person with a disability to a decent free life, as other people have, to recognize the right to make their own choice when assistance and support are provided.
There is an opinion that ideal conditions for the life of a person with a disability are created in institutions. This opinion is fixed by administrative rules, which prohibit the first, second, third ... Ultimately it turns out that this is not in interests of a person, but in interests of rules.
Meanwhile, a person has the right to live independently, make decisions about his own life, has the right to self-determination. And we do not have the right to command someone just because we help him. Our help is only assistance, but not power over a person who has certain special needs. And in this regard, institutions are a social phenomenon that shows these flaws on the personal experience of each individual person ...
* The main photo of the material is illustrative
The activities are carried out by the Office for the Rights of Persons with Disabilities as a part of the information campaign "Deinstitutionalization as an opportunity to promote human rights for people with disabilities with intellectual and / or mental disabilities in Belarus". The campaign works in support of the regional project of the Lithuanian organization Mental Health Perspectives and the European Independent Living Network (Brussels) with the financial support of the European Union (Realization of the rights and opportunities of civil society in an effort to encourage the social inclusion of people with intellectual and / or mental disabilities and their participation in decision-making processes in six regions).
