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Interview

“They enter as children and depart as olives”

The Zero Tolerance activist and film director speaks about what he witnessed in the Lechaina Institution, where disabled children have been reaching adulthood in cages, their deaths marked by an olive tree planted in memoriam, and calls for an end to institutionalisation.

Athens, Lechaina
Antonis Rellas in Syntagma Square, during a public intervention on deinstitutionalisation organised by Zero Tolerance, December 2019.

Antonis Rellas in Syntagma Square, during a public intervention on deinstitutionalisation organised by Zero Tolerance, December 2019.

© The Manifold

How did the decision for the Emancipation Movement for the Disabled “Zero Tolerance” to occupy the Lechaina Unit in November 2015 come about?

Zero Tolerance was formed in 2010 with a view to building a disability activist movement, a movement for the emancipation of disabled subjects, alongside the Movement of Disabled Artists. We began implementing actions, publishing articles, occupying premises, staging all kinds of interventions. And then came the time to emancipate ourselves so that we could deal with the grave issue of institutionalised life and deinstitutionalisation. Institutions are where the most vulnerable of vulnerable disabled persons are kept, unable to advocate for themselves, having no one else to advocate for their rights, neither the personnel working in that field nor their parents, should they still be present. So, we, their fellow disabled, began to advocate for their rights.

A two-day festival was held at the self-managed theatre “Embros” shortly before the occupation, a solidarity festival for the children and adults of Lechaina as well as all the other institutions. There were discussions, documentary screenings, plays. The groundwork for the occupation was laid there.

What was the aim?

To highlight the horrors at the nucleus of disabilitisation, which is none other than institutionalised living.

What was the plan?

To occupy the premises in question and invite civil society to join us in becoming many. It did not happen. The response was not there. The cameras were there, in that there was widespread media coverage at the time.  All the TV channels, both public broadcaster ERT and private broadcasters, aired reports, each in their own manner. A lot of the coverage took on an anti-government bias. We were not focusing on that aspect at all, at the time. Besides, the SYRIZA-ANEL government had only been in power for two months. Our focus was to highlight what was a chronic situation. Lechaina had not been happening for two months, it had a history of 37 years.1

We had done our research, observed what our fellow disabled had done abroad. In Great Britain, this process had been initiated by the disabled themselves. In other words, we were not doing anything new, something that had never been done before. We based our actions on this pre-existing model. We said, “Let’s go do this, same as everyone else.” We, on the outside, must make a stand for the lives of those on the inside.  

Were you afraid?

No, no, no. Not at all. We were in the right, I had nothing to fear. None of us was afraid. We had already occupied the Social Insurance Institute (IKA) in 2011. When Syntagma Square was packed with half a million people, we went and peacefully occupied the IKA headquarters for four days. We stayed in Lechaina for four days, too; apparently that is how long our bodies can withstand being exposed to these conditions…

We arrived at Lechaina during mealtime, a total of nine people, most of us disabled, in four cars. We explained who we were. The Chairman of the Board of the facility said we needed a permit to enter – the police conveyed the management’s request to us. We were prepared, ID cards in our pockets. We told the policeman that the violations taking place here were far greater than any violation our presence might give rise to, that we had no intention of hindering the staff in their work but had no intention of leaving either. We went inside knowing what awaited there, but the reality is always much harsher than anything you could have imagined.

Did you have any run-ins with the authorities after the occupation?

We are the ones who went to the Public Prosecutor. Four of us left the unit and went to the Public Prosecutor’s office in Amaliada and filed a complaint. To this day, since 2015, we have not been called to testify.2

The complaint was filed officially, not anonymously. There are specific liabilities at stake: who prescribed physical restraint? Who prescribed the medication? Specific criminal liabilities are pending, and, to date, they have not been investigated. Unless we are to accept that the disabled persons at the unit are unworthy of living, in which case no criminal liability arises.

“The fact that nobody seems to wonder about who is to blame for these people’s torture is indicative of the treatment  of disabled subjects in institutions.”

The fact that no one is held accountable for this conduct, the fact that nobody seems to wonder about who is to blame for these people’s torture–it is just not possible that no one is to blame—is indicative of the treatment  of disabled subjects in institutions. Is the psychiatrist responsible? Did she prescribe by fax? Was she contacted at two in the morning and told “so-and-so is hitting themselves,” and did she reply, “I’ll fax you a prescription”? Did she do that? If so, is it allowed? Is it a punishable offence? Are prolonged physical restraint and/or prolonged chemical suppression scientifically accepted practices? Are they torture? The UN says they are. As do we. That was what we witnessed. Torture is what we witnessed.

We met the psychiatrist, too, she came to the premises while we were inside. We wanted to speak to her. She did not.

Ideologically, we stand against doctors. Obviously, we do not refuse the intervention of medical science. At the same time, however, we are aware of the part that the medical field has played in us being disabled. By “disabled” in this instance I mean “oppressed”, I do not refer to the impairment. The initial impairment is a separate matter. But if you study the file of a person who has spent twenty years in an institution, his resulting state bears no relation to the initial impairment. Because the impairment of institutionalisation has been added on top.

Several other attempts had been made prior to your intervention and official complaint…

Are you asking why we left it for so long?

No…

I do wish to answer that, nonetheless. We have critically self-reflected on this, on why we left it for so long. Nine of us went there and did something. Why did we leave it so late, why did we not act sooner? We would have made a difference to more people. We looked away, we did not want to face it, we could not face it.

One in two people will project. One of our fellow disabled members, who has spastic quadriplegic cerebral palsy, had been confronted with the prospect of institutionalisation in the past. His mother had been told the all-too-frequent “Don’t make it harder on yourself. Send him to an institution so you can focus on raising your daughter”. It was hard. I, with my acquired disability, never felt that. I did not believe at twenty-one that my parents would lock me up in an institution. I was already a director; I was working in television. But for other members of the group, who were born disabled, that was one of the turns their life could have taken. We became wiser…

That is what our group is all about, the emancipation of the disabled. The first to become emancipated are the members themselves through this process. We did not want to face this harsh aspect of reality, this prospect that could have been ours. On the other hand, once we stepped outside this individualised perception of disability, once the personal became social, that is when we began to think about what we could do. Could our small band go inside and do something impactful? Not just take a couple of photos and then leave. Would we be taken seriously? Would there be news coverage? Would the ministry take note? Because frustration also plays a part. When you have experienced frustration so many times, over and over, you think it over and wonder, “Should I get involved or will it lead to yet more frustration?” In the end, we burst in and ultimately, some things were put in motion.

“For deinstitutionalisation to become a demand, for this monstrosity to stop being socially acceptable and normalised, we need to change the way society thinks of disability.”

Therefore, in terms of a section of society staging an intervention, it was an action worth taking. At the same time, the self-criticism for the delay still stands. We had to fight against our own taboos. That is no small thing. It was a more painful process for our members who had been confronted with the prospect of institutionalisation at some point than for us. It was harder for them to cope with it. We used to meet, days later, not out of a need to discuss politics or organisational matters, but to talk. To cry, to drink, to cry again… mainly to be there for those who had found it most painful. If you talk to the fellow disabled member I mentioned, he will tell you this: “No matter where I find myself, a cage stands beside me. I carry it with me.” It was an experience that marked people, and I don’t just mean the members of Zero Tolerance. But we are not enough. For deinstitutionalisation to become a demand, for this monstrosity to stop being socially acceptable and normalised, we need to change the way society thinks of disability. We are not interested in everyone’s personal sensibilities. We are interested in mobilising civil society.

What we say applies to all institutions. Nonetheless, Lechaina is a case study in disablism, in living bereft of human dignity in a difficult part of the country, where people perceive disability in the manner stated by Minister of Agricultural Development Makis Voridis,  namely that there are disabled people who have the capacity for understanding and disabled people who do not.3 And as a society, we still hold on to the belief that the people in Lechaina do not have the capacity for understanding.

Lechaina must be shut down, the people there must leave. Four years to the day, however, we are still discussing what must be done.

Why do you think that is the case?

It is rotten from the start. Because when a child is born, the first thing the parents, where available, will hear is the medical opinion. It is rotten from the moment the obstetrician enters the room and tells the new mother, “Your child was born faulty.” He will not tell her, “Look, there are difficulties ahead, but you can do this and that.” He will only tell her about the difficulties. He will not offer comfort but launch into the medical script of “he will not be able to think, to see, to hear” and so on. That this child will be bad for her other children, that this child will ruin her relationship with her husband, so “Do not breastfeed, I will interrupt your milk-flow and we will send it to an institution. Your responsibility ends there, you do not need to concern yourself with the course of this child’s life.” That is the classic scenario.

In this instance, we are not talking about broken families, about offenders who are imprisoned, and whose children end up in institutions. We should note here that only fourteen to fifteen per cent of the institutionalised have absolutely no point of reference, in other words, a parent who could potentially take on some responsibilities. Therefore, we are talking about abandonment; about how a couple imagines the stork bringing a blond, green-eyed “normal baby” and then receives a “faulty baby” and decides to bin it.  In those cases, it is the doctor’s intervention that causes the initial damage. Add the way society espouses those same views and the parents freak out. They suffer too, of course, but that does not change the end result.

We saw this in the case of Maria in Lechaina, when we spoke to her mother. The moment her daughter was born, the doctors began to list everything that could happen, medically speaking. But a person is not a medical diagnosis. They are a person. And the problem arises when you start listing all the medical difficulties that lie ahead instead of how they could be dealt with in an organised society.

Does that organised society exist?

Well, people who, despite all these difficulties, make a choice that goes against the medicalised belief that a person who thinks differently ought to be normalised certainly do exist. People who, for example, do not try to normalise autistic children, who do not have a neurotypical brain but an autistic one, and make them be like us. Because that is the beginning of Nazism.

According to Lev Vygotsky, there is a belief that the disabled are a priori unhappy.4 It is a racist belief, this belief that our lives are lives of suffering, that sometimes they are lives not worth living.

Adriana, who recently passed away, was nineteen years old. I think Adriana’s original diagnosis was glaucoma, meaning she was blind. When we found Adriana, she did not speak, she did not walk, because she lived in a cage. She was restrained when she was around seven years old, because they had no way of confining her and because they could not “nurse” her. So, they put her in a cage because she was active, and no personnel was available to watch over her. The most common question in there is “What are you doing standing up?”. It’s like a regular barracks. Why must they be lying down all day long? Why must they be confined to their bed? Why can they not be outside on the swings?

The standard reply is that the unit is understaffed. It’s a chicken and egg situation. Why are they understaffed? Why are all the residents in diapers? Why do none of them know how to be self-reliant, to use the toilet on their own, to feed themselves? Because they have lost their skills due to institutionalisation and the complete deprivation of every social right. Therefore, the reason the personnel does not suffice is that all these people have been rendered incapacitated.

Is there some kind of logic in what the staff are claiming? There are two people per floor in each shift.

That’s true. But the conclusion depends on your starting point. Do you begin by examining why this happens, or are you only interested in examining the outcome you are dealing with? Two people per floor in each shift are obviously not enough. But why does that happen? How can it be possible for a person with spastic quadriplegia not to be autonomous? Not to be able to eat, drink, use the toilet on their own? How can the rest of us do all those things? They were never allowed to develop.

Or their abilities were “anaesthetised”. A child enters the institution mobile and within a week stops using the toilet. Then the child gets given a bedpan…

A bedpan, really? They soil themselves and then are cleaned with a wipe. They only rarely shower. If a minister is planning to visit, they’ll be given a bath, so they don’t stink. If anyone makes the mistake of soiling themselves after the diaper change, they must wait for the next round. There is no personalised care for this. That means someone can spend hours in a soiled diaper. That is why you end up with that pervading smell in institutions that they can’t wash away.

“The persons freed by Nikolaidis’ team, unfettered, still slept at night in the same sleeping position they had been restrained in for years. Do you understand what that means? The most comfortable position was the position of torture.”

Have you seen their bodies? Have you seen how many functional deformities have resulted from the repeated adoption of certain postures? Would you like to hear something strange, which also demonstrates the oppression, the torment they have been subjected to? The persons freed by Nikolaidis’ team, unfettered, still slept at night in the same sleeping position they had been restrained in for years. Do you understand what that means? The most comfortable position was the position of torture. In other words, we made people feel comfortable being tortured. That is why, in the early days, almost no one accepted the intervention. That is why it was such an enormous, difficult task for that team.  

Another scene I will never forget is the two young girls, Ellie and Maria, who were eleven years old at the time. When the intervention team arrived at Lechaina, these two girls, being the youngest, were removed to the Rehabilitation Center for Disabled Children (PIKPA) in Voula. We used to go and visit them there. One day, they came to our home for a few hours, accompanied by PIKPA volunteers. I remember Ellie in particular, looking for a place to hide. Under the table… always a sheltered spot, away from people and animals. By the end of the day, they were crying because they did not want to leave. It was our understanding that they had never been in a house before. She lay down on our bed, she wanted us to tuck her in so she could sleep there. She saw a dog for the first time, she had never seen one before. She stared at the dog, watched it as if wondering what that strange creature was. We ate together, they had dessert, we danced… same as one would with any other child.

Except that these children had been deprived of love and care. Real love, not the care that an institution’s staff can give. I do not dispute that some of the staff may form emotional attachments with the disabled there, but the way of life in an institution is the very opposite of nurturing care. You spend your whole life being approached by someone in a laboratory coat. Why? They can’t even grasp the fundamental concept of turning up in your own clothes. The gloves, too. Wearing surgical gloves to feed the residents. Why? What are you going to catch? The whole set up of institutions is medico-centric.

You are not only an activist; you are a director too. You are currently working on a documentary about Lechaina…

The two roles are interconnected in any case.

So you enter the occupied building with a camera…

I was not the one holding it, but yes. Two cameras. We went to record what was happening. That’s how it started.

What was the initial purpose of filming? Did you take the cameras as protection?

On the one hand, it was to protect ourselves against anything that might happen, on the other hand, it was to record that moment. Film it and see what was happening there. What we encountered was beyond our worst nightmares.

Did you also take cameras to the occupation of the IKA headquarters you had previously staged?

Yes, small cameras then too, to record everything. As well as for protection, we use the cameras to film material that we can then upload on Zero Tolerance’s social media.  

After the press conference we held at the Lechaina Child Care Centre (KEPEP) on the third day and our departure on the fourth day, the first thing I did was to edit some early material, which is still available online, to accompany the press conference in Athens, to show the journalists and launch the discussion.

When did you decide that you wanted to turn this into a documentary?

I decided during the occupation. I realised that this was an issue I needed to follow up. So, I returned at various intervals, no longer as an “occupier” but first and foremost as a disabled person. And I kept filming. I stayed inside the unit for three, sometimes four days at a time, left, returned, again and again. These past four years, I have made 34 trips to Lechaina if my memory does not fail me. I keep a diary…

This allowed us…

You use the first-person plural?

Not out of politeness, but because I consider this to be a group project, not my work exclusively.

Anyway, this allowed us to observe how things evolved inside Lechaina because one year later, Nikolaidis’ team arrived to implement the interim intervention. The emergency relief intervention for the residents was introduced, and we began to see how these people changed thanks to it.

How their behaviour changed, how the residents we first met, who were uncommunicative, tied up, inside cages, chemically suppressed to the point of being unable to hold up their head, eyes unfocused, began to blossom in the year and a half that followed the start of the intervention. We watched them develop their skills, we heard them speak, utter words, we heard others express specific requests, “I want a bedside table”, “I want my own clothes”, “I want a TV set”, “I want a remote control”. That’s a huge leap for someone who has been utterly dehumanised, who has been turned into a zombie by receiving “the prescribed treatment for their own good”.

We saw them step outside. Leave the narrow confines of the bedroom and venture into the dining room, go to the floor above for an activity, and that momentous occasion when they saw the front door, stepped outdoors. We witnessed their fears and inhibitions. They did not want to break their routine. For them, normality was the bed, the cage, the straps; “bed restraint” or “mechanical restraint” as they call it. Some did indeed refuse to cooperate. But that is perfectly normal. Fear was the cause.

But we also saw people suddenly use a spoon and feed themselves, it was incredible! Because up until then they had been bottle-fed, lying down, gulping down liquidised meals in seconds. They did not know how to use their mouths to eat. That is why the teeth of nearly all the residents are in a terrible state. This change took place inside the institution – we did not go to a new space where things were different. It was inside those premises, that place of torture, that the situation changed.

What I had not anticipated in the making of this documentary was filming the dead. People we had met. Attempts were made to remove them from the institution, but they subsequently passed away. I’m not talking about elderly people, they were young.

Take Panagiotis, for example, the oldest resident at fifty years old. It is a miracle he has managed to survive like this, staring at the ceiling. The people who died were much younger: Christos and Ellie and Adriana and Maria.  Ellie was fifteen. Adriana had just turned nineteen. She was the blind girl.

We imagine you have spoken to the staff during your visits. You must have interviewed some of them…

They did not want to be interviewed. Now that they have found out I’m not filming for the sake of it, that I am creating something specific, they might change their mind. I never film with any formality; I do not shout “action!” I prefer things to be spontaneous, a recording of reality without altering the environment so that the actual circumstances remain unchanged. This means that the set up must be minimal. Small cameras to avoid creating a sense of occasion, no boom mics, no lights, no large crew wearing headphones.

So, I met them as individuals first and foremost, learned about their lives, their stories, how they ended up working at the unit since most of them had no previous background, no connection to this field. That did not surprise us, they are locals who found work. Some of them have been working there since the very first day, so we heard about how they were thrown in at the deep end when the institution opened, without any organisational setup. They brought the residents there without any idea of how to deal with them. The staff told us how they ended up organising themselves and creating these conditions, meaning the beds that they enclosed in bars, turning them into cages.

Which they refer to as cots or playpens among themselves.

 Yes. Of course, the term was coined by the former Minister of Health, Katerina Papakosta. “Playpens” then, and that “strapping them down is for their own good” so that “they cannot harm themselves”. Once again, was it the chicken or the egg? When you are enclosed in a confined space for a prolonged period, without any stimulation, no sensory stimulation, no psycho-emotional stimulation, then you begin to hit yourself, to drink your own urine, to eat your own faeces and all the other things you hear about. But this applies to every human being subjected to these conditions, you do not need to have an impairment to reach that point. The institutionalisation makes you impaired. Of course, all behaviours are attributed to their disabilities, it is the easiest narrative to adopt. They tell you, “Can’t you see what they are like?”.

We imagine you have also wondered how these people accept to subject other human beings to this abuse. Do you have an answer to that?

I know that they struggled at first, at least according to their narratives.

Morally?

Morally, I would say yes, they morally struggled with strapping people down. The system is set up in such a way as to render them responsible for some people. But given that this conversation is constantly rehashed, the issue is not whether we can hire more staff so that the torture can go on, so that there is “better monitoring” and residents can continue to be drugged up to the eyeballs. The issue is that no matter how much personnel you hire, you are still running an institution. And the concept of an institution is not that far removed from the concept of a barracks or a prison. Wake up at set times, eat at set times, sleep at set times.

Were these people convinced by scientists that this is the appropriate approach?

Scientists prescribed both “mechanical restraint” and the drug dosages. With absolutely no supervision. In fact, in some cases, they added a new medication to the mix without discontinuing the previous medication. Without anyone ever checking drug interactions or potential side effects. We saw the end result. Zombies. That’s it.

For years the personnel refused to accept the new state of affairs. They did not want to accept that there is an alternative way to provide care. 

Because it meant stepping outside their comfort zones?

I think they did not want to accept that they might be doing something wrong. The prevailing attitude was “Are you here to tell me that what I have been doing for twenty-five, thirty years is not right? How dare you?”

But you are not just telling them this is wrong, you are saying this is inhuman, this is torture.

 “We love these children very much, but there is no other way to manage them. They are monsters. They are unpredictable. If we don’t restrain them, they’ll be climbing up the walls. They could eat the plaster. They could eat their own faeces. They could swallow a large object, choke and die.” These are all actual words we have heard. That is why our position is that none of these people should continue to work in this environment. I don’t mean that they should lose their jobs. I mean that they should go and work in a different environment, certainly not in an institution.

By talking to them, showing them examples from abroad, we managed to persuade a few of them, too few. We were thinking of organising screenings of foreign documentaries on deinstitutionalisation, where the residents themselves discuss life before and after the closure of their institution once they had lived in society and developed their capabilities. The response was, “You are in the Balkans now, this is all too European. Who will fund all this? They’ll run it for half a year and then back to the same old.”

The truth is that we went there having made the conscious decision not to go down that frequent route. Blaming personnel is the easiest thing in the world. That is not to say there is no personal accountability, but the main responsibility lies with the so-called, in our view non-existent, welfare state. It lies with the politicians, who have kept us trapped in a time warp all these years.

And when the issue was all over the news, they would come out with statements. Like former Health Minister Andreas Loverdos in 2011, who stated that he would grant access to any journalist who wished to visit an institution and report on the conditions. And former Deputy Minister of Health Katerina Papakosta, who visited Lechaina following the BBC report and informed us that the situation was not what had been presented, that the “cots” were used for the children’s own protection and that they were standard practice. Then, former Minister Effie Achtsioglou and Deputy Minister Theano Fotiou announced a deinstitutionalisation scheme, and for the first time in Greece, the word “deinstitutionalisation” was pronounced by someone in power.  

What was the reaction at the Lechaina unit?

Their first reaction when deinstitutionalisation was announced and I visited Lechaina was, “It’s going to be just like ERT. They are going to shut it down and fire us all.” They needed to hear reassurances from the ministry that they would not lose their jobs. Very few said, “OK, I can understand why this needs to happen, this situation cannot continue. What will our part be going forward? How will this thing work? What’s the next step?” I told them, “It would be far better to work in a real home in the city of Lechaina or a place nearby and work in more humane conditions.”

Moreover, the professional foster care scheme had been announced, which would enable some of the workers to foster a resident in their home. Some of them had, indeed, bonded with certain residents, bonded with the “children”, everyone is called a “child” there, even when they are fifty years old, so they could opt for professional fostering and work from home.

The SYRIZA-ANEL former government announced professional foster care but did not take the necessary actions to implement it. How did your interlocutors react to the idea, nonetheless?

I discussed this with a worker who calls one of the residents her “daughter”. I told her, “Why don’t you take your daughter home under the professional foster care scheme then?” She fell silent. She just gaped at me. Being in your workplace and having formed a bond with someone there is very different to transferring that relationship into your own home. I imagine that would require discussions with her husband, her children, her social circle. Even without the implementation of professional foster care, the option to take a resident home for the weekend was still there. All it required was the permission of the Board of Directors. No one ever did that.

Or for the holidays, Christmas…

Every Christmas they host an event for “normal” children who are allowed into the lobby, they do not go further inside, and sing Christmas carols.

There are children who have been inside the unit and decorated the cages…

Yes, from the American Community Schools of Athens (ACS), to brighten up the torture of the people kept inside the cages. Of course, the residents were not physically inside the cages while the students painted them.

Small mercies…

That was one of the most vivid contrasts that struck me as I entered the centre. The dystopian landscape. The stench of excrement, fettered residents moaning and groaning and “I love you” painted on the walls, signed by ACS. I really would like to know what on earth the educator in charge had been thinking.

Returning to the subject of the personnel, I have seen the extent to which they have accepted the work they are asked to carry out and the resulting way of life for the residents. It never ceases to astound me, in all the institutions I have visited, be it Crete, the PIKPA in Voula, Thessaloniki, Komotini, Rhodes… This situation is normalised. It might shock those of us witnessing it for the first time, but that is the reality as far as they are concerned. I was also astounded by the fact that few visiting relatives seemed to be astonished by what they saw. They found it normal too.

We have also witnessed an admission being deterred. A woman came to leave her child, accompanied by her mother and a friend.  The child was around twelve years old and high functioning. The reasoning behind the decision was to save her marriage and spare her other children. She was evidently being pressured by her husband to abandon the disabled child, so they could focus on their “normal” children. Her mother was even more adamant, saying the place looked great and the child would have a wonderful time there. Nikolaidis took her into his office, shut the door and they talked. He explained that in six months, the child would no longer be in the same state. She left his office in tears.

Did she take the child with her?

Yes.

So at least one child was spared…

Maybe she split up with her husband. Who knows what kind of pressure she was under? The guilt she carried with her for giving birth to a disabled child. The belief that she was being punished by God for some previous sin… In any case, yes, we were glad that the admission was averted.  But they did admit a new resident recently. Various organisations were mobilised, we opposed the decision publicly, the ministry intervened, and the child was brought to Athens because the public prosecutor would not rescind the order. That is also a big issue. I do not know if a decision to prohibit new admissions at Lechaina has been officially made.

There is a Board of Directors decision to suspend admissions.

Only that. Theano Fotiou, Effie Achtsioglou or the General Secretary for Welfare, I do not think they ever issued a decision to ban new admissions when they decided Lechaina would eventually close. Of course, things are no better elsewhere in Greece. Lechaina differed in the use of those “cots”. But I have seen a resident fettered with ropes in another institution, I have seen those tall “cots” with high bars, allegedly to stop people from falling if they stand up on their beds. All institutions operate along the same lines. Even the smell is the same. They all smell the same.

What did you have in mind when you began working on this documentary?

Look, when you start a documentary, you are not in charge, the reality guides you. Going into Lechaina, I decided to do what the documentary title says: From Asylum to Society. In other words, we decided to take what society rejects by relegating it to an isolated building somewhere far away, record it and bring it before its eyes. I wanted to experience it, to go on this journey that I think is gradually coming to its end. I cannot sit and wait to see how the new government will act.  See if it wants to raze everything that happened before to the ground and do something entirely different. Many rumours are going around, some bordering on science fiction, but there are some others which may find us in agreement. I wanted to record this unbearable situation, which is one hundred per cent legalised and imposed by the state itself. A situation that is connected to the perceptions we all have, including the country’s politicians, about the lives of the disabled who find themselves outside the family circle for some reason, and that is the only protection we afford them.

Unfortunately, a documentary cannot communicate the smells, nor what being there does to someone like you or me. But the conditions… the conditions inside an institution. No matter how good you try to make them, an institution remains a place of torture. Torture that has been normalised using the physical impairments of the those confined there as a pretext.

You must have been hoping for something at the beginning of the documentary, however.

Yes, I was hoping that the final frame would be Lechaina closing. I did…

Do you feel frustrated?

We are used to frustration… Yes, I feel frustrated. I had hoped that Effie Achtsioglou’s announcement of the deinstitutionalisation scheme would be the turning point, that the moment was finally upon us. That it would start with Lechaina and spark the desire to do the same everywhere. That all institutions would be shut down and that no unprotected child would have to go through this again. That even the child’s hospital stay would be short-term, and it would be fast-tracked into foster care. That the conditions allowing the birth family to care for the child with the help of a welfare state would be created. That they would explain that having a disabled child is not the end of the world.

During the four days of the occupation there was tension, our interactions were formal, information would reach us, Theano Fotiou made a statement, we made a statement. In the end, we decided the pressure group must move from inside Lechaina to headquarters, we announced that we expected to be called to the Ministry to discuss everything we had recorded. At the same time, we sent all the material we had gathered abroad to spark a reaction in Europe, the bodies charged with welfare. We sent it to the UN, and they issued a recommendation that we read out during the press conference we held at Lechaina on the afternoon of the third day, inviting local press. The mayor came, along with various others.

 We broke down on the day of our departure. We broke down because we were saying goodbye to our fellow disabled, and we could not grasp that we were free to leave that place, but they would stay behind. We broke down. We wept. We sobbed. We said goodbye and gathered around a bench outside, by the olive trees and burst into tears. An olive tree is planted every time someone dies. All these people, they enter the institution as children and leave when they are adults… by dying. “Deinstitutionalisation” via movement to the great beyond, if you are a believer. We wept because we knew that we were going home and that from that day forth, we would have to find a way to change the reality we had experienced, no matter what.

I also feel great sadness. Because, for us, the residents of Lechaina have a face, a name, a history. We got to know them; we became friends. They have been ready to leave the institution for a year now. Nikolaidis rightly said from the start that you cannot just take people out of a cage and simply transfer them elsewhere, there needs to be a training and transition process. That process has taken place.

So, I feel sad because we did not get to see them live in different circumstances. At least not yet, because we hope that someday we will. But we need the help of civil society for that to happen. But, sadly, society is not mobilising.  And that is the heart of the matter. The issue of deinstitutionalisation is vast, it concerns a great number of people. In 2014, the Roots Research Centre in Greece estimated that approximately 900 disabled persons are held in institutions. They enter as children and depart as olives. That is the Greek version of deinstitutionalisation. It is a massive issue. It would be a great step forward for society as a whole if we released the disabled from institutions.

This interview has been edited from conversations that took place in December 2019, January and February 2020.