CEMETERIES FOR THE LIV By Aneta MIRCHEVA It was the beginning of May. Following a pretty tough debate at a local county meeting, Assen* and I were sitting in a clean little cafe talking. Assen has epilepsy and a mild mental and also physical disability (due to a head injury in a car accident) which rendered him unable to walk, and he now needs to use a wheelchair. Otherwise he is an energetic young man craving to see the world a better and friendlier place, and doing his best to that end. It was nice and warm. The town was beautiful and full of life, colour, and emotion. Somehow, however, despite this beauty and charming idyll, our conversation took a strange turn. Assen had spent a long time thinking of his future, of the time when his mother who was now helping him with daily stuff would no longer be there for him. This was a difficult issue, a matter of the very near future. He had made up his mind. ”There’s no other way” he said. “I am going to have to go to an institution. I have spoken to social services and they have promised this. It will have to be a place for the mentally retarded but they will look after me and help me...” ”You don’t mean that, do you?” was my reaction. Then slowly, as I listened to Assen trying desperately to persuade me how good it is ”there”, I realised he was being serious. In his imagination, somewhere in Bulgaria there was a place as beautiful and peaceful as his hometown, where most people are friendly to him. A place where he can live without fear of losing the fragile support of his mother, and be able to go on with a life as structured and as meaningful as he’s had so far... A lot of people in Bulgaria share that fantasy. Once a friend of mine, tired of her rushed day-to-day life, wished she could live in such a place. I honestly struggle to understand these fantasies. Perhaps they only exist because these places are invisible? The invisibility of people’s suffering; mentally handicapped people. They often share the same fate. Born with serious disability or for some other reason, they are abandoned at a very early age. Some of them have severe disabilities at birth. And it is they who very rarely live to see themselves in a senior care home. The rest are transferred from one institution to the other until their death, never having known the existence of a different life. The homes for people with mental disabilities. How do people end up stuck in the timelessness of those * Name has been changed because the author was unable to get permission to use real name before the publishing deadline for this article
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places? Left to gradually become even more deficient since institutionalisation is a form of deficiency much more severe than any original diagnosis. No one ever asks why. Why is it that this person never acquired any social skills? What brought him or her to this state? Even the diagnosis is never reviewed, other than on paper. The childhood diagnosis follows the person and gradually replaces him or her, so that people stop perceiving him or her as a human being but rather as a severe and hopeless diagnosis. Doomed... These homes are cemeteries for the living; for people who have spent a lifetime without knowing kindness or love, and in many cases without ever having been treated as humans or having experienced the beauty of the world. Some of them have simply been abandoned. I cannot even start to imagine what it is like to grow up in an institution. But I do think that these people have been hidden so deeply namely because they are the living reproach to our society, to each and every one of us. And also because thinking of them causes that depressing feeling of hopelessness and helplessness that none of us wants to experience, wants to come close to, or ever witness. In the care homes for the mentally disabled it all seems hopeless. People are irreversibly lost in the darkness of their suffering. Staff around them seem deep into their own thoughts and problems. I remember one of these ”homes”. (Is it not ironic to call these institutions homes? It does seem ironic to refer to as home a place where people are being locked away to die slowly, far from the world of the living, forgotten and unseen. Is it not the home that is supposed to give us warmth and strength to find our purpose and cope with life’s challenges?). As with similar places, men were lying on their beds with empty eyes fixed on the ceiling. Somewhere someone was screaming. Someone else sat chewing a piece of dry bread. A small group sat entranced by yet another series in front of a large TV set. But what I will never forget was the most heart-rending sight - a man with a physical disability. He could not walk on his own. I do not know where it was that he wanted to go and whether he still wanted to. He was crawling on the floor, slowly and painfully, chewing at a piece of dry bread in the meantime. Maybe it wouldn’t have been that shocking had it not been for the brand new wheelchair standing right beside him. It shone polished and untouched; new and sombre. One of that institution’s greatest acquisitions, possibly present in every single report. It was late at night. Two attendants and two nurses were on duty. I enquired into the meaning of this absurdity. They shrugged. It was pointless. He did not understand.