What it means to live in an institution
“I know what it’s like to belong to the state, to have no one and be buried like a hooligan. I fought, especially as I was in a world of prejudices. The foundation will integrate me into society, I will have a job. Waiting was worth it. Now I want to get employed at an auto service. ” (Silviu Tocilă, former CIA Olteni resident)
We invite you to see what life in an institution means and how we can contribute to respecting the rights of people with mental disabilities through collaboration between human rights organizations, service providers and managers of residential institutions.
Interview with Dora Calian, lawyer for the Mobile Legal Clinic
In 2007, when I was 17, I began to volunteer in orphanages for children and I am saying “orphanages”, because this is how they were formerly called, they somehow were the current family-type homes. The impact that the contact with the institutional environment had on me was huge. I then saw that an institutionalized child, without even having a medical diagnosis, is very different from a child raised in a family and I realized that the imprint of the institution will forever stay with them. The state, through its resources, services and people, has basically traced their destiny.
Then I made a commitment to myself to do everything I can for these children, and so my openness to human rights was born, deciding that no matter what the nature of my professional activity would be, I would also be involved in the field of social protection.
Last year, when I found out about their new project, the Mobile Legal Clinic, I felt, before my expert application was accepted, that it would be my first real contact with the field of human rights.
The first center I entered was the center from Jucu, Cluj County. Frankly, I can say I experienced a shock, I felt overwhelmed by everything I saw there. Of all the centers I have visited, I believe that in this center we have identified the lives of some people who really represent the definition of a total lack of autonomy. What surprised me most about this visit was the psychic disability itself, the way it manifests itself. Obviously, I’ve met other people with mental disabilities, I’ve interacted with them, but I had never seen what the life of a person with such a disability really means, and what it supposes.
It can be said that the reason why people are in the center is the same to everyone, namely the lack of alternatives, the lack of a family that can take care of them and the protection measure subsequently established under these conditions, namely support granted to them is also common, as it is represented by the Romanian state through its policy and services. As a result, it is clear that, from a common life context, social and legal situations with common elements are born, such as custodians who take over the properties of the residents they represent, residents who die under suspicious circumstances and are no longer found in medical records, residents with social benefits contracts concluded with the center, signed by nobody, and so on.
However, I think that the most impressive case for me was a lady I met in a center whose name I will not mention. Basically, this lady, about four years ago, was refused surgery by a doctor on the grounds that she had no one to sign, to express consent for her … Since then, she is only being administered medication by the center’s family physician, although the medical condition is serious and requires intervention. Employees of the center told us that the lady had to be placed in court and be appointed a legal tutor to sign for the medical act. The first things that she said to me and my colleague when I asked her what she was doing and how she felt were: “I am sick and no one wants to sign for me”, and then she gave us specific examples of potential signatories, relatives and acquaintances of herself, examples accompanied by solid reasons from her point of view, that they should not sign.
Specifically, so that the surgery could be carried out, a legal representative did not have to be appointed before, as only the psychiatrist is competent to determine whether a person has the necessary discernment or not. As long as the lady was not under judicial interdiction, she was under the legal presumption of discernment and so she could give her conscious and free consent to the surgery. The physician manifestly unlawfully refused to perform the medical act, violating the legal provisions in force by his conduct, and the center did not signal these irregularities to him. On the contrary, the center has accepted the physician’s argument, they concluded that this measure was necessary, but did not proceed further, justifying it by the fact that there is no person taking over the guardianship. Under such conditions, I wonder rhetorically, what did the center expect then, for the state of health to worsen and this legal issue to disappear basically by the disappearance of the person concerned? Because if we are to look logically at the situation, this would be the consequence.
If this person had been in a family, would the family members have adopted the same attitude, would they still have been in passivity? After all, the center should be a replacement for the family and I wonder if anyone explained to the staff of the center what the act of abuse in service is, what the responsibility for malpractice of the medical staff and even manslaughter are, would responsibility still be dismissed so easily, nonchalantly stating that there is no tutor? Another revolting issue, maybe even more revolting than the situation itself, is that we have discovered this situation when we were almost on our way out of the center, simply intrigued by the fact that, unlike other centers, there seemed to be a lack of one of the main common problems, the absence of tutors, the lack of signatories for the residents. I then asked a representative of the center if they did not really face this problem. It was only after some returns to the question that he somehow remembered that there was such an irregularity, answer given after having handed them leaflets with the Mobile Legal Clinic throughout the visit and having asked them expressly if the residents needed legal support. It was precisely the case of the lady, a person with whom one could relate and with whom the tutor could have had a communication-based relationship.
Interview with Vadim Chiriac, lawyer for the Mobile Legal Clinic
Vadim Chiriac is one of the lawyers of the Mobile Legal Clinic, who, following visits to centers and psychiatry hospitals, took on cases regarding people with disabilities. Besides the sometimes difficult communication with relatives of the people in institutions, the authorities, the management of the centers and the hospitals, there is another difficult issue: communication with the courts, which have not yet succeeded to operate a complete change of paradigm in the area of people with disabilities.
“The approach is that these people are disabled, need protection, pity, they are poor, so how can we help them, how can we protect them. We are always told by the center staff not to believe people’s sayings, as they are not trustworthy, they are lying, they steal, they have behavioral disorders, they have a disability, they have committed criminal offenses, they are always trying to belittle them, and this not just during visits.
It is more difficult to work with people with disabilities than in other areas of human rights, because there are many prejudices against these people. Nobody believes a person with disabilities. Okay, the people in the institutions do not believe them, we go on, we fight this, we try to get them to see reality. But the problem and frustration arise when you see such attitudes at the Prosecutor’s Office or at a court where you already have very few available means to make them change their minds, especially if you have a final decision, and that’s what makes our work harder from the beginning. In anti-discrimination, in general, we are talking about prejudices in many areas, but here it is at every level, even where we often have to find support.
How do you solve it? You struggle, you try to say as much as possible that it is not so, that a person with mental disabilities must have the same presumption in good faith as any other person. The law does not distinguish here, any person enjoys this presumption. We cannot make any judgments on this criterion alone, we cannot reduce everything to that, medicate everything, reduce that person to a disability, and treat them differently than we treat a person without a disability.
This lack of understanding also comes from the lack of training, that is, we speak of social professionals in the legal field, from prosecutors or judges to the legal staff in the institutions, lawyers, and here I can also speak in my name as a law graduate, because, unfortunately, one does not go through training that would prepare someone for work in this area, as it should be. They are not professionally taught to consider these people as having full rights, as equal persons, people who know their situation, who may want things for themselves and can do it.
I, as a law graduate, know that there is no emphasis on human rights, there is no emphasis on communicating with the client in general, much less when the client is a person with mental disabilities. There is no one looking from this perspective. Further, in the Constitution and the Civil Code we use terms like “alienation” and “mental debility”, and so this is how we refer to the most important laws for people with disabilities. It is a very old paradigm and, unfortunately, the lack of knowledge, the lack of interaction with these people, the lack of some awareness, create these prejudices towards people with disabilities. ”
Interview with Cerasela Predescu, ProAct Support Director
ProAct Support is one of the few organizations in Romania that provide community-based services and helps adults with intellectual disabilities who have lived much of their life in institutions, to live independently. So far, they have helped 56 people out of institutions, providing them with a home in the homes and apartments they own, helping them to have every day, but never-experienced, activities by themselves. The desire of ProAct Support and people with disabilities is that after some time spent in these services, adults, especially young people, learn enough skills to move on their own and secure their lives.
“ProAct Support develops community-based services for people with intellectual disabilities and mental health problems who have lived most of their lives in the institution and are helped to leave the institution and start a new life within the community. In other words, it promotes Article 19, the right to live in the community, of the UN Convention on the Rights of Persons with Disabilities.
Our target group are institutionalized people. There are more than 18,000 people living in institutions, under conditions which deprive them of freedom, with lives that have no meaning; they have no social role they could fulfill there and they are wasting their lives in such places.
In the institution they are in continuous sleep, they are sedated, they do nothing. Life is dull and very simple, from the moment of waking up, when they take their medication, they eat, rest, then the lunch comes, they take their medication, eat, rest. Then comes the evening, they take their medication, eat and rest. That’s not really life.
I believe that any of us, if we lived at this pace, would have mental issue. They are not stimulated, the activities in the center are not specific to their age. Or if they are more targeted, they are presented in a manner as if they were children. If we go into so-called socializing or leisure centers, we’ll see an open TV, we’ll see caricatures, colors. That’s nothing significant. We are talking about adults over 18 and up to 80 years of age.
These people are better off living in the community, that’s all that matters. Because people change their lives, they become confident. There have been people who benefited from our services, who have been here for five years and they have evolved so beautifully, that they came out of our services and the protection system altogether. Now they are in their own homes, others are in Spain, they live with their family. We have young women who work in tailoring workshops, cleaning services, computer assemblies, green spaces, they dig, they take care of the lawn. They work in warehouses, restaurant kitchens or fast food. They work in the supermarket, construction stores, tires stores, at the bread factory.
The people who come to our services – we “court” each other sometime every three months, we visit them, we invite them to us. We host events, we either serve lunch or they stay over the weekend, have a barbecue in the yard, they come and stay more and more. At first, two to three hours, then one afternoon, then they stay over the weekend. This culminates with the transfer of the person. And all the while, the person identifies where they are going to move and together with the person we go to choose photo frames, we choose posters, linen, towels, we try to choose something that the person likes and they decorate their space, so when the move is decided and when the person is officially transferred by the Commission of Assessment’s decision, they come to a place where they have already built a relationship. The fact that they have already put three pictures on their bedside, that they have already chosen a linen with their favorite colors and put it on the bed, they have put a poster with a singer or a dancer they like – the place already isn’t hostile anymore, it is familiar. Moreover, it is a place that the person, through their actions, did so and this is a part of the fluidity of the transition.
After leaving the institution, young people keep extremely visible food and food items. They have the tendency – because many did not have enough food – not knowing at first that everything in the refrigerator is theirs and that if they run out of food, they can go and buy and supplement. They tend to eat fast to ask for supplement. Moreover, sometimes they hide pieces of bread or fried cheese, something to take to their bedroom, and many put them under the pillow or under the mattress, for fear they might not have enough and so they want to have something overnight. So they eat a lot in the first period.
On the other hand, they do not understand that they are free people. The fact that we do not have a bodyguard, the fact that they can get out anytime, here they have problems because they do not understand what this thing is: Nobody asks nothing? Nobody stops them? They are allowed to leave? And then there is this process that they have to learn, that it’s like in any family. Do you want to leave? Okay, but you have to say it. I am going to buy some bread or I am seeing a friend. They just have to say it, so we know about them, where they are and that they are safe. But until they learn this, they are fearful and do not go out, they feel the need for excessive control, to be asked, be stopped. It’s paradoxical, although they want freedom, they want at the same time someone to stop them. It seems strange to them that they have so much freedom.
Then they do not know how to make choices. They go to buy clothes: anything they want. They do not really know what they want. They do not know what color they like. They do not know how to proceed, what to choose, they have to be taught to choose and have options.
Most are afraid to go alone. They want to be accompanied a lot of time. They always say that they are from the home, that they are handicapped, that people are picking on them, they have no courage. And then, until they get courage, it’s a matter of trust in them. They have to be accompanied until then, because they have the impression that they are less than the other people.”
Interview with Amy Hozer, New York Mobile Legal Clinic
Amy Hozer is a senior lawyer and manager of the Mobile Legal Help Center (MLHC), the first “wheel-based” law firm in the United States to provide legal advice and representation in court. A partnership between the New York Legal Assistance Group (NYLAG) and the Access to Justice Program of New York Courts, MLHC provides free legal services to New York residents. Find out in the video below.
Interview with Randye Retkin, Director and Founder, LegalHealth, NYLAG
For over 25 years, Randye Retkin has been developing and managing legal programs for low-income people. She is recognized at national level for building partnerships and collaborations between professionals working with the chronically ill, to help them access medical and legal services. Find out more in the video below.
“We were in a world of prejudice,” says Silviu, a 21-year-old, with an institutional path beginning as early as the age of 1. Due to his ambition and tenacity, he managed to leave the residential public system to start a new life at the ProAct Support Association, an organization that provides social inclusion services, promotes the deinstitutionalization and genuine inclusion of adults with disabilities.
Silviu was born in Turnu Magurele, Teleorman, in 1996, being abandoned by his parents at the age of one year. Thus, Silviu reached the Placement Center no. 1 in Alexandria. Subsequently, he was in the care of a nursing assistant, and would be a resident, in several residential centers within the county.
In 2015 he was transferred to the Olteni Care and Assistance Center by the Social Assistance and Child Protection Department of Teleorman.
The biggest wish of this young person is to become included within the community, become independent, and complete their studies in order to have a job later. That’s why, a few months after he arrived at Olteni, he learned about ProAct Support and he paid a visit for a few days to see what life would mean there. Since then, Silviu has taken all steps to transfer, has made requests to the head of the center, to GDSACP (General Direction for Social Assistance and Child Protection), but without any results.
Following the takeover of the case by the Center for Legal Resources in the spring of 2017, 6 more months have passed before the transfer to ProAct was approved, in November 2017, thus making Silviu free to choose his residence and live in the community, rights provided by the Convention on the Rights of Persons with Disabilities, ratified by the Romanian State by the Law no 221/2010.
Today, Silviu learns to self-manage, is honing his skills of living in the community, and is seeing one of his dreams coming true: going for a few hours a day to an auto service, to learn what to do to become a mechanic.