Self-advocacy for intellectual disabled big issue in Bulgaria

The interviews below were written in 2019 and just a snapshot. I have no idea how the interviewees are doing now.

People with an intellectual disability in Bulgaria don’t have the legal right to choose themselves the way they want to live. BAPID, the Bulgarian Association for Persons with Intellectual Disabilities, strives to improve the lives of these people by acquiring this right. I was invited at their office where I spoke to Donika Koleva and Alexander Kenanov. Together with Donika, I also visited a day centre in Sofia, Maria’s World Foundation, where I spoke to Iva and social worker Ivo.

Donika (l) and Alexander (r)

BAPID was established 25 years ago by parents of intellectual disabled people and professionals who work with them. Its aim is to improve the situation of the intellectual disabled people in Bulgaria. BAPID is a network of 41 local member organizations of which parents, professionals and adults with an intellectual disability can become member. It covers 110 municipalities. BAPID has a national representation and is recognized by the government as an official interlocutor.

Donika works as a project manager at BAPID and is mainly occupied with the subject of advocacy. According to Donika, BAPID succeeded in making significant improvements for the target group. However not all achievements are visible yet and there always remain points to work on. ‘The government adopted documents stating that people with an intellectual disability should not live in special institutions. They must get the chance to live on their own with the help of community support. That’s the general direction. However, in practice there are a lot of difficulties to realize this in Bulgaria. People without an intellectual disability must get more information about the target group, so they get along with them well. People with an intellectual disability have become more visible over the years. Not all non-disabled accept people with an intellectual disability totally. With the transition from institutions to community living this has already improved. More services must become available for the target group and general services must become more accessible. The main obstacle for the target group is the fact they are not entitled to take their own decisions. They stand under guardianship which means they have nothing to say with regard to their finances and they are for example not entitled to vote. This directly effects their quality of life. BAPID strives for more legal rights for the intellectual disabled. At the moment, there is no governmental support to realize this. We made proposals to the parliament and they spoke about it. After that, the government fell and a new parliament came which had to start the discussion again.

‘People with an intellectual disability are being supported to stand up for their rights and to tell themselves what they need to have a good life. In 2015 we created the national platform of self-advocates. This network has 30 members at the moment. It must grow and the members have to be instructed more thoroughly how to fight for their rights. Each year, a seminar is being organized at which the members discuss with each other about the path to follow. Besides self-advocacy BAPID works on establishing services like early intervention. A methodology that helps parents to stimulate the development of small children who have a learning disability or a lack in their development.’

Article 12 of the UN Convention on the Rights of Persons with Disabilities states that persons with a disability enjoy legal capacity in all aspects of life just like non-disabled. It’s especially this article BAPID uses in her work for supporting self-advocacy. BAPID is a member of the National Council for people with disabilities as well as a full member of Inclusion Europe, Inclusion International and the European Association of Service Providers for Persons with Disabilities. BAPID actively participates in national, European and international events for protecting the rights of people with intellectual disabilities.

Donika works from a small office in the centre of Sofia. Besides Donika there’s one other employee who works from there and the Executive Director, Sonya Vladimirova. I did not meet her that Friday. She was giving a training on Supported decision making for people with an intellectual disability. And there is Alexander. Alexander has an intellectual disability and cleans the office. I also spoke to Alexander about his life in Sofia and his big dream: becoming a sports trainer for intellectual disabled children.

‘I am 43 years old. Before I started to work for BAPID, eight years ago, I did a lot of sports: swimming, table tennis, badminton, judo, skiing, swimming. Nowadays, I only swim. I joined the Special Olympics as a Bulgarian sportsman several times. The first time was in LA, 1994, which was my best experience too. I made a lot of friends then.

‘I live with my parents who are still able to take care of me. I have one brother who lives in Singapore. I like living in Sofia. I can travel by public transport on my own. I think the city should become easier for people with an intellectual disability. Some years ago, I went to the European Parliament to give a speech about children with an intellectual disability. I think the members of the Parliament liked it.

‘I like my work at BAPID, but my dream is to become a sports trainer for children with an intellectual disability. I have no concrete plans to realize this yet. I will need support. I wish to become an example for children, to be able to motivate them to do sports. In order to develop their skills. And it would be nice to get paid as a trainer. Now, I get a small salary of BAPID and a small pension.’

Like mentioned in the introduction people with an intellectual disability have very limited opportunities to get a normal salary when they work. The pension is far too less to be able to live on their own, should they be able to. That’s why they live at home with, most of the time, aging parents. One can foresee this is going to give problems when these parents are not able to care for their children anymore or die. This is something that should be tackled by the Bulgarian government.

It is not that the intellectual disabled are not willing or not able to work and become more independent. Of course, it most of all depends on the level of intelligence. When that is high enough, they are eager to learn, to work and build their own life. Like Iva whom I met at Maria’s World Foundation, a day care centre in another part of Sofia.

Maria’s World Foundation

Ivo (l) and Iva (r)

Ivo is working as a social worker in Maria’s World Foundation and sees Iva daily. He shortly tells about the foundation: ‘The foundation was established in 2012. The day care centre exists since 2013. We have around 35 clients who are working in ateliers. They learn to make arts, acquire working skills about cleaning or how to cook. Our aim is to improve the quality of life of our clients and their families by making our clients more independent, to stand up for their rights. We are a member of BAPID The day centre gives the participants the feeling they are useful. It makes them visible in society. In summer, we sometimes invite the direct neighbours into our sheltered café.'

Iva is 33 years old and still lives with her parents. From Tuesday until Friday she is present in the day care centre about which she tells enthusiastically. ‘I acquire working skills in the day care centre. I work in the arts atelier where we make several souvenirs and postcards. Besides working we sometimes go to cinemas where they have special adapted screenings for us with a simple voice over that makes it easier for us to understand the movie. I would like to become a paid shop assistant. I already have experience in this. I assisted at bazars.’ Ivo: ‘She’s our most important person for this work and does it very well.’ Iva continues: ‘I feel useful in the day care centre. I also participated in self-advocacy activities, for example with regard to decision taking. We collected signatures for our demand with petitions. I would like to take my own decisions. Go on my own to work and to authorities to get my documents. It should be easier to get access to social activities. At the moment, there are only a few possibilities for intellectual disabled people in Bulgaria. We are not accepted on normal schools. When we have grown-up there also are few opportunities to live independently. I can already cook, I go shopping myself and dream to live on my own one day. I used to be much more dependent on other people.’ Ivo confirms: ‘Iva is one of our smartest clients.'

After the interview Iva proudly showed me the several working places of Maria’s World foundation and the products they make. Here are some pics (publication with permission of Maria’s World Foundation and copyright: Johan Peters).

The creativity atelier where Iva normally works

Example of products they make. As one can see, these are products for all kinds
of seasons

The ironing and washing room. Left: the working clothes