The System is Killing Us

Ryan Prout explores the harsh realities of care provision in Bulgaria

Ryan Prout

In The Palace is a peripatetic international festival of short films founded in 2003. The venue for the event moves between Bulgarian cities and its name comes from the fact that the annual festival takes place in the palaces of culture that are a legacy of communism’s construction of grand buildings designed to house popular culture rather than the aristocracy. In 2022 the event was hosted by Pernik’s Palace of Culture, a building that dates from 1957. Its classical columns sit alongside friezes of rigorous and robust Stakhanovites, partially hidden by cobwebs and roosting pigeons.
With an invitation from the festival to contribute to the event’s academic panel, I went as a delegate to speak about The Dress, Polish director Tadeusz Łysiak’s thoughtful and provocative short film about disability and sexual citizenship. Another of the contributors to the event’s academic strand, Bulgarian scholar Stefan Goncharov, asked me what I knew about the protests by mothers of disabled children in Bulgaria. That conversation came back to mind when I saw a semi-permanent reminder of these protests outside the former Central Committee building in Sofia – a large tent daubed with slogans and ringed by abandoned low-tech wheel chairs.
I contacted Polina Stoyanova, a graphic artist who also drew the cartoon map of Sofia. Polina put me in touch with fellow artist Teodora Doncheva, who in turn put me in touch with Alina Dancheva, a disability activist whose son has cerebral palsy. Alina very generously spent a couple of hours with me on Zoom, filling in some of the gaps in my knowledge of disability activism in Bulgaria.

This interview and the forthcoming comic strip drawn by Teodora are the result of those conversations. If the Q+A does what I hoped it would do it should outline some of the issues that have driven parents – mostly mothers – of children with disabilities to protest the slow pace of progress with regard to disability rights and environmental accessibility in Bulgaria. The idea here is not to depict Bulgaria in a bad light but to do something to amplify the voices of children with disabilities and their care givers.
The conversation with Alina is informative, I think, about the frustrations faced by parents in Bulgaria who are as knowledgeable as anyone else anywhere in Europe about the state of the art structures and technologies available to support those living with physical impairments and who are, at the same time, confronted by a social infrastructure that has not yet caught up with standards in Western Europe and in which attitudes toward disability that date from the communist era persist.
An important slogan originating in the disability rights movement in the UK is ‘Nothing about us without us’. With the import of that slogan in mind, the comic strip will include the words of a youngster on the cusp of childhood and teenage years who tells us, in his own words, about current limitations, and about his aspirations. Parents need respite. Children need hope for a future with a degree of independence and the opportunity to make friends and enjoy companionship.

Q + A With Alina Dancheva about the origins of the disability protest movement in Bulgaria, and the everyday challenges for families bringing up a child with a disability.

RP: Your son, Boris, is 12 now and attends a mainstream school in Plovdiv. What does this mean in practical terms for you?
AD: In effect, I’m my son’s assistant during the school day. The building isn’t adapted in any way for children with physical impairments. There isn’t a lift and there are no ramps. On a typical day Boris will have lessons in class rooms on different levels of the building and so I need to carry him between floors. Disabled children can attend mainstream schools but parents are given the responsibility for arranging any assistance the child may need.
RP: What makes it difficult to find someone suitable to work as an assistant for a child with a disability?
AD: The main obstacle is that the amount that the authorities allocate to cover care giving or assistant costs isn’t enough to provide someone a living wage. Being enthusiastic about care giving work and well qualified doesn’t cover the gap between the equivalent of 200 Euros a month, which is what is allowed, and what someone needs to get by. When families advertise for assistants or care givers they are mostly older women and grandmothers who respond to the ads and they wouldn’t be able to carry or lift a twelve year old boy and a 12 kg wheelchair. That’s why parents and family members often have to take on the role of full time assistant themselves.
RP: And what happens, then, in the case of an adult with a disability, who needs a care giver and doesn’t have an immediate family member who can act in that capacity?
AD: It’s very difficult. I have a dear friend in his fifties who’s physically disabled and who needs support in order to leave the house and get out and about. His mother was his primary care giver. Since she died, my friend has been living alone with his father, who can’t act as a care giver. I’ve been trying for four years to find someone my friend could engage as an assistant and we just can’t get anyone to take up that role for him. And that means that this very bright man, who loves interacting with people, hasn’t left the house in four years. He’s stuck indoors because there isn’t the social infrastructure that would allow him to lead the more fulfilled life that he is very capable of living
RP: The social infrastructure isn’t there, but the government does have a system for grading different types of disability, doesn’t it?
AD: Yes. For example, Boris has cerebral palsy. The government’s ranking system rates cerebral palsy as 100 percent disabled and so we receive the maximum amount of financial support. But let’s say you have a child with Down syndrome, or autism. The grading system may rate these disabilities at 90 percent. That means the amount of financial support is significantly reduced. And this is nonsensical since a child with autism or Down syndrome may need just as much support and assistance as a child with cerebral palsy.
RP: The ‘maximum amount’ – that sounds like a lot. Is it?
AD: No! For example, my son needs rehabilitation every day. It’s important for it to be regular because that’s what prevents development of scoliosis and other conditions connected with posture and impaired movement. So – that’s what we do: Boris has rehabilitation sessions every day. But, the allowance we receive from the government is only enough to cover 10 sessions in a month. What should we do the other 20 days? We have to find a way of covering this ourselves. It’s relatively easy for someone from outside to contribute to care giving and support for a child with cerebral palsy. Other conditions, epilepsy, for example, really require specialist knowledge.
The people who work in rehabilitation are poorly paid and earn the equivalent of about 650 euros a month They can be very committed and that sort of salary scale downgrades the work that they do, as does the fact that these are areas of specialism for which there is very little continuing professional development in Bulgaria. What incentive is there for people to go into this line of work, when, unlike in other European countries, there are so few opportunities to develop a career from it?
Students in Bulgaria who enroll for a degree in social work do a three month internship as part of their course. However, this is usually at an institution and so they don’t get any experience of people receiving care and support at home.
RP: What about equipment and mobility devices?
AD: In Bulgaria, what’s available is limited and of a standard issue variety. There is only one outlet in the entire country for customized wheelchairs. But each child with a disability is different and a one size fits all approach doesn’t work for wheelchairs. For someone like Boris, being able to use a chair that has extra support for his back makes a huge difference. People in Bulgaria look to Turkey for specialized equipment and wheelchairs. What’s available there is far more advanced. They even use the latest technology, and even robots, for physiotherapy sessions. There are only a few facilities like this in Bulgaria. There’s an enormous amount of bureaucracy involved in trying to access them, with no guarantee that at the end of it an application will be approved. In Turkey it’s standard for three people to be working at the same time with an older child in a rehabilitation session. In Bulgaria it’s never more than one person per child.
RP: I saw for myself that Sofia is a city that can be quite difficult to get around when you don’t have a physical impairment. What’s it like for someone who does?
AD: It’s not easy. The urban infrastructure, a lot of which dates from the communist period, wasn’t designed with accessibility in mind. Adaptations that would make this older infrastructure more accessible are few and far between. The effect of this is to make physically disabled people invisible. It’s a vicious circle: the urban environment is almost entirely inaccessible for disabled people, so they’re absent from it, and since nobody sees them, they assume they don’t exist, and therefore there’s no need for anything to change!
In the latest versions of school text books they have started to include representation of people with disabilities. Children see disabled people in their school books, but where are they going to see them in the outside world unless it becomes more accessible? The lack of accessibility extends, ironically, to the buildings where we need to go to do all the paperwork and bureaucracy connected with social and disability care. We live in Plovdiv now. Some of the buses here are accessible. On the other hand, the bus drivers are impatient and are not keen to stop and help. That’s very different from what we experienced on visits to France and Switzerland.
RP: Is this lack of accessibility something that extends elsewhere in the country?
AD: Yes, it is. For example, on the Black Sea coast you’ll come across resorts that have been equipped with ramps. That looks good. But they only go half way towards the sea front. And then they just stop. It’s a sort of set dressing. The authorities can turn round to the EU and say ‘Look! We’ve made this place accessible and used the money from Brussels in the way it was intended. Aren’t we good!’ But that sort of gesture politics doesn’t mean much if you’re a wheelchair user and a ramp comes to an end in the middle of nowhere! Half-baked accessibility doesn’t work.
RP: How did you become involved in the movement to protest the lack of support and facilities for children with disabilities and their assistants/care-givers
AD: I became aware of the protest movement in 2010 when I saw a brief report about it on TV. Back then, it was just a few mothers taking part. As more people connected through social media, the movement grew. There was a large demonstration in 2018 when we marched though the streets in Sofia and stopped in front of Parliament. Some politicians came out then and spoke to the protestors and a few of the activists went inside the building. The politicians made lots of positive noises: the rhetoric was good but nothing much happened afterwards. Journalists covered the story and it was forgotten within three days. Some public figures and artists were at the 2018 protest and the question is, ‘What did they do afterwards?’
The slogan we used for that protest was ‘The system is killing us’. We wore this on printed T-shirts and carried black balloons. We left toys and a symbolic coffin outside the Prime Minister’s office, as well as some of the generic orthopedic equipment that has damaged our children.
Many of us are too tired now to keep on staging demonstrations like the one that took place in 2018. People are running out of energy. There were very few people from outside the community of parents with disabled children who attended the protests. And politically Bulgaria has been unstable in the last several years with repeated general elections, and yet another round in 2022. There’s no effective government at the moment.
RP: What has campaigning been like for you, and for other disability activists in Bulgaria?
AD: We have done a lot in terms of outreach, to the EU, and to foreign embassies. To be honest, there hasn’t been much feedback. Parents of children with autism are a very strong community and are well organized. They may do more than the government does to highlight these issues. We have to ask questions. Of government and EU bodies, and of individuals. Yes: the EU provides funds to update and improve support for people with disabilities in Bulgaria and what happens to this money? Where does it go? And, on an individual basis, how are people in receipt of support for rehabilitation costs actually using that money? And we need to change attitudes so that when someone for once, as they go about their daily life, actually sees a child with a disability, they don’t think it’s appropriate to remark to a family member that his must be the work of a malign force or the evil eye. And we have to ask why, more than thirty years after the communist structures were broken up, we still don’t have a proper social care system in Bulgaria to replace what there was before, however inadequate and faulty that may have been.
RP: What were protestors demanding in 2018, and have there been any positive developments more recently?
AD: What we were saying to the government was that the social system needs to be changed, totally, if it’s going to respond effectively to the individual needs and potential of disabled children. An example of the absurdity of the system at the moment is that very little of the bureaucracy can be done online. It has to be done in person, at offices that are very often inaccessible.
The system we have is very inflexible. Social workers have a list of facilities that can be supported and if what your child happens to need isn’t on that list —an adapted bicycle, for instance, or an adapted chair to use at home so that a child can sit at a table and eat by himself,— they can’t help you.
There is a huge amount of red tape and hoops to jump through before you can access support. Every three years we must attend a Doctors’ Commission and its determinations decide what we can and can’t access. But they just make an assessment. They don’t recommend particular therapies or any sort of program of support.
In other EU countries social workers make home visits and arrange measurements for personalized wheelchairs. When Boris needs a new wheelchair, it’s down to me to figure out from where we’re going to get it. Some doctors, specialists, and orthopedists here look on families with a disabled child as a money-box. They say they can make the personalized support device that you need and what they’re most interested in is how much they can charge you for it.
A recent positive development is the government’s new assistant program and a scheme for care givers. This is some sort of progress. I keep an account of what I am doing every day and turn this in to the authorities. It has to be in person and on paper, though. I can’t do it online. So, for the time we are on holiday, I have to step out of the program.
There are one or two politicians who are doing something but progress is slow and we need someone to make rapid changes to the system
RP: What does being Boris’s full time care giver and assistant mean for you in practical terms?
AD: It means that for the last twelve years I haven’t been able to do any other sort of work. I am a full time care giver. In Holland and some other EU countries, support for parents who are full time care-givers includes the opportunity for respite and parents can relax for a period of time in the knowledge that their children are being well looked after in their absence. We don’t have that in Bulgaria. And neither do we have access to the psychological support that parents in a similar position can access in some other EU countries. I mentioned to you before that I need to be at Boris’s school to assist him in moving between classes and I also have to lug the equipment he uses, like the chair that enables him to sit upright in class, between home and school.
RP: How is it that some children with disabilities continue to be institutionalized in Bulgaria?
AD: Some parents allow their disabled children to be institutionalized simply because they do not have the resources—economic, psychological, or both—to cope. There is also quite a strong bias in the medical structures toward institutionalization. To give you an example, when Boris was nine months old a neurologist told me that he would be a vegetable and that we should put him in an institution. Medical professionals here tend to look at children with disabilities as objects
RP: A connected question, I think has to do with gender and the strain on families created by a social support system that is far from ideal. Would you agree?
AD: Yes. I would estimate that something like fifty percent of fathers in families where there is a disabled child quit the family. And those who stay are more likely to use alcohol as a coping mechanism. Child support for divorced women can be very low, perhaps the equivalent of 75 euros a month. How can a woman who suddenly finds herself a single mother with a disabled child survive on this? She can’t go out to work because if her child is going to a mainstream school she has to go with him or her every day.

August 9, 2022