Social care homes in Ukraine
Opening words to a conference on May 18, 2018
I don’t think I will ever get used to it, and that is probably a good thing. Talking to a person who entered the social care home labyrinth in Ukraine because of a mishap in his or her life, who understands full well that there is no exit except after death, leaves a permanent mark in your memory. If I close my eyes I can see the hopelessness and resignation in their eyes, the sadness in their voice and the feeling they radiate, of being lost people forgotten by the outside world.
A week ago we again toured several social care homes in Ukraine. This time our trip was under the auspices of the Ministry of Social Affairs, a unique experience because this is the Ministry that bears responsibility for the social care homes and until now had been a closed institution, as closed as the social care homes themselves. However there is a new leadership, and their willingness to allow us to enter unrestrictedly is highly appreciated.
The fact that institutions knew about our arrival didn’t really make much difference. Of course, they had four or more days to clean the buildings and get rid of the worst institution smell, to remove things they did not want us to see, to shave the residents and make them look decent. But this did not make a difference. It is a layer of varnish under which it is fairly easy to detect reality. There is no differentiation, no rehabilitation as an aim. In one of the social care homes we visited the reality consisted of structured abuse, inhuman and degrading treatment, extensive use of medication, slave labor and an unusually high death rate. Run by a director who had little idea about what he was actually in charge of, but had no problem using his inmates as forced laborers in his garden and livestock.
We saw four institutions this time, two of them institutions we visited before, institutions where we intend to work to stimulate and help the transformation process that is so long overdue.
Take a woman of 31 years old. Her parents abandoned her, and as a result she wound up in a children’s home. Because she could not keep up with mathematics she was transferred to a children’s social care home as a sort of punishment. There she lived till she was 25, was given the diagnosis of schizophrenia, put under guardianship and subsequently transferred to an adult social care home. Alone against the outside world, abandoned by family, with a pension stolen by her guardian, she has no future but to live in the social care home until she dies. Thirty-one years old, the last time she was outside the walls was 22 years ago.
Another woman, in her mid-forties. Had a mental health crisis after divorce, was taken to the Pavlov psychiatric hospital, declared schizophrenic, put under guardianship and passed on to a social care home. Totally depressed, she has come to the conclusion that her life is senseless. The only reason she lives is her handicapped son of 16 years, whom she hasn’t seen for five years. Communication is a one-way street as she is not allowed to have a telephone. Her depression and sadness is reason to give her a constant changing combination of drugs – instead of offering her a brighter future.
We have so many of such stories. All people who are lonely and abandoned by families and the system, most of whom have given up the hope of ever coming out, have sunk in depression and are often given medication because of their depressed state. It is a vicious circle: a client is agitated or angry because of the hopelessness of the situation and is medicated because of this. Agitation is seen as a symptom of mental illness, not of a very human reaction to a hostile environment. Clients can’t sleep and are given excessive dosages of sleeping pills instead of doing something about the reason why they can’t sleep. One of the clients who is now out of the social care home was given such dosages of sleeping pills that she was almost permanently drowsy. She does not take any medication now and sleeps without a problem.
What we are looking at is a monstrous remnant of the Soviet past, where people wo did not fit the standard “norm” of socialist society where everybody is a productive element, was ostracized from society and locked up in institutions in order no longer to be seen. The Soviet Union disintegrated, but this system continued to exist and in a disturbing way even thrive.
The problem usually starts at a young age, when a child with conduct disorders or the product of a failed family winds up in a children’s home. From there part of them is sent on to a children’s internat, and for a wide variety of reasons – and definitely not only psychiatrically - adolescents are given a rubberstamp diagnosis, declared legally incapacitated and when reaching adulthood sent on to an adult social care home. The overwhelming majority will never make it out alive. In a male social care home in Krivoi Rog in the course of seven years 147 inmates entered the system; as the size of the social care home did not change this means that in the same period some 147 men died – a death rate of 5-6%. And looking at the ages it is not because of old age: the oldest person in the institution is from 1941, most are born in the 1960s and onwards…
“Schizophrenia” has become the magic word, the rubberstamp that keeps the social care home system going. This too is completely Soviet. Already in 1973 the World Health Organization found out in a study that this diagnosis was used much more frequently in the USSR than elsewhere in the world, and we also know that many dissidents were diagnosed with “sluggish schizophrenia” and sent to psychiatric hospitals for compulsory treatment. However, Soviet psychiatrists really believed in their Soviet diagnostic system, and isolation from the outside world created this vacuum in which such aberration became possible. Psychiatrists today are no longer isolated, have access to international literature, use international classifications such as ICD-10, and thus rubberstamping people with this diagnosis has become a meat grinder through which people are processed.
I don’t think we should hide reality: in many cases clients in social care homes have been reduced to objects, in a cynical way they have become “productive elements”, however only because they carry with them pensions and often property that is either stolen by relatives or by the guardian. Human lives don’t count; their misery is of no interest to those who have taken away all their rights.
I can go on for a long time, but I think it is better at this stage to look at the future rather than the present.
What can we do to alter the situation?
Reforming the social care home system will be a long and complex process, and will be a road with many potholes, obstacles and resistance. We will be dealing with vested interests, which corruption schemes and antiquated views on people with disabilities, with a resistant society and with families that have become accustomed to the fact that one can rid oneself of the burden of a disabled child or relative simply by dumping it in an institution. The social care homes are the garbage can of Ukrainian society and it takes a huge effort to change that Soviet perception that so-called “unproductive elements” can be easily stashed away in institutions.
For now, we will start working in two institutions, among the largest in the country: one here in Kyiv and one in Slavyansk, Donetskaya oblast. Together they hold 1,200 women and girls, many of whom should never have entered any institution and could have lived normal and fulfilling lives in the community. Our task is to develop mechanisms to try to restore what has been lost, to reorganize services, to teach them life skills that are essential for living in society, and then to see how many we can help to find their way back to freedom.
For those who are too institutionalized, for whom returning to society is a bridge too far, alternatives need to be found, enabling them to fulfill their dreams however simple they might be.
In the meantime it is crucial to close the front door, to make sure new clients do not wind up in the same situation and become the next “lost souls” of Ukrainian society. That means alternative systems need to be developed, and families need to be stimulated maximally to continue to take care of their loved ones, or their “not-so-loved ones”, by providing support mechanisms. The Soviet Union is dead politically, but should also be finished off mentally, also in mental health.
I am very grateful for the support we get from relevant governmental bodies, from people who know the system intimately and have a strong inner desire to change it fundamentally, but never had the chance to do so. I look forward to working with them, fighting with this stagnated corner of society, and rejoicing with them when we see our first clients return to society and become part of life again. That will be the day!