Reasons for my trip to Bulgaria
I was invited by ENIL to go and speak at a conference in Sofia on deinstitutionalisation and community-based services, representing the European Expert Group on the Transition from Institutional to Community-based Care (EEG). This was one of a number of similar seminars, which the EEG is organising in cooperation with the national governments and the European Commission throughout a number of Central and Eastern European countries. The purpose of the conference was to help encourage and facilitate Bulgaria to further actively engage in the process of freeing disabled people from institutions, using Structural Funds. I knew this would not be an easy task, having had some prior knowledge of the situation in Bulgaria. I am still haunted by the awful vivid memories of the oppressive conditions disabled children were living under in institutions in Bulgaria after being exposed by the BBC documentary some years ago.
However, this invitation also provided me with the opportunity of arranging an independent living session with the Sofia CIL. I was excited about being able to offer and share my independent living expertise with our fellow Bulgarian disabled friends. This session, however, ended up being quite an experience for me personally. It was hard realising the enormity of the barriers which disabled people are living under in Bulgaria, so seeing it face-to-face was shocking.
The experience in Sofia was an incredible eye opener into the conditions and situation in Bulgaria. Both myself and my personal assistants Klara and Lukasz were very moved by what we witnessed in Sofia. We were indeed very shocked to discover the incredible adverse conditions disabled people are living under with the lack of appropriate community support and services, opportunities and equipment generally. I knew that the situation was bad there, but until I witnessed it directly, I couldn’t fully understand the difficulties disabled people face in getting personal assistance and community-based services developed. This experience will live on in all three of us due to its powerful impact on us. This makes the whole issue of deinstitutionalisation even more important and urgent in Bulgaria. This is where the Structural Funds (the European Social Fund and the European Regional Development Fund) can actually help to improve the conditions and quality of life of disabled people, by helping move them out of institutions and developing more community-based services and structures.
Getting from the airport to the city centre
It didn’t take me long to realise how the environmental barriers can make life difficult for somebody who is a wheelchair user. Within minutes of my arrival at Sofia airport, my two personal assistants and myself went to take the only so-called wheelchair accessible taxi in Sofia. I was astonished and alarmed, because the taxi was barely high enough for me to enter into it in my wheelchair. I had no option but to use it, as it was the only means of transport to our hotel in the city centre, as there were no other accessible bus or train services. Thanks to my two personal assistants, I was able to enter the taxi by one of them leaning me forward, whilst the other guided the wheelchair. I then spent the most undignified taxi journey of my life not being able to look out the window, as I was facing downwards and needing the support of one of my personal assistants to avoid hitting my head on the roof of the taxi! These are certainly environmental barriers which need to be seriously addressed and overcome if deinstitutionalisation is going to become successful.
The independent living session at the CIL Sofia
The day after we arrived, the CIL Sofia arranged an independent living interactive session with me. This involved a few disabled people relating their life stories about living in institutional care and also living within family supported care and asking me to compare their experiences with the situation in the UK.
The interactive session was facilitated by a Bulgarian journalist called Maria Cherneva and the two Bulgarian disabled people interviewed were Lucy Borisova and Peter Kichashki. Other people participated by either asking questions or making contributions. It was a very lively session and passions rose as people’s feelings and experiences over spilled emotionally by the difficulties they were facing.
The session was attended by approximately 35 disabled people and their friends and supporters. There were two groups of young disabled people from two different group homes who managed to get there, but unfortunately had to leave early due to the time restriction regulations of the specialised transport they came in. Their contributions were very valuable in understanding the difficulties they were living under. The rest of the participants were mainly involved with the Sofia CIL.
It was a very lively session, which first started off with Lucy being interviewed about her experiences living in four different institutions. She also spoke about her attempt to live in her own flat, which she unfortunately had to give up due to access difficulties.
Peter spoke about his life as a disabled person who had been supported by his family and was currently studying Law in Sofia University. They were both two different situations and Peter was lucky in being able to get his support from his family and hence avoid living in an institution.
What became clear was the difficulty disabled people had living independently in Sofia. There was hardly any support and all that was allowed was six hours of personal assistance per day at 1.50€ per hour if they were lucky (if you can call that kind of support lucky)! This is hardly a practical wage to fully support people’s independence.
Another issue which appalled me was to find out that the young disabled people living in a so-called small group home had to ask permission if they wanted to leave the group home and go out, by putting it into writing. This is certainly no way to treat young disabled people in 2014 and is a violation of their human rights and freedom of mobility.
The CIL in Sofia had been trying to improve the situation for many years, without much progress being made. There did not seem to be the political will by the government and authorities to change this. This trip left me and my two personal assistants with a very deep impression of the great human values that these people represent, the strength that they showed us, their determination in the endless fight they have, but most of all their important fraternity and help they provide to each other in their struggle for their human rights.
Over the last eight years, Bulgaria has been trying to change its past reputation of excluding disabled people in institutions. It is a small beginning, but they have a long way to go. They must invest in people and not buildings and involve disabled people in a co-productive way in the process. European funding can make a huge difference as the expertise is available and we’re ready to give it a go!
John Evans OBE