Over the last five years, ENIL has been doing a lot of work to build the capacity of young disabled people so that they take an active part in the Independent Living movement. ENIL has run numerous trainings across Europe and has established an active Youth Network. These activities have produced a number of young leaders. However, the demand for young people’s input is greater than the pool of people currently available and ENIL has decided to provide more intensive capacity building to selected individuals, to be able to realise their leadership potential.
Key barriers that have emerged in supporting young disabled people into leadership opportunities include lack of confidence, lack of technical knowledge and lack of skills for working at the European level. To help tackle this, ENIL decided to pilot a small-scale tailored leadership program for a small group of young disabled people who each show the potential to be a multiplier in their community and at the European level.
Several people got the opportunity to participate in the leadership program at the end of 2016. One of them – Thomas Fadden, a 29-year-old from the UK, wrote a report on his experience in Sofia, Bulgaria. Reports by other participants in the leadership program will be published over the coming weeks.
In December of 2016, I was given the opportunity through the European Network on Independent Living (ENIL) Leadership program to visit Bulgaria and work with the Centre for Independent Living Sofia (CIL) to see how independent living works in a different country, the barriers they face, and to exchange ideas. I spent 6 days in Bulgaria. My mentor for the week was a project officer from CIL Sofia, called Mitko Nikolov, who showed me Bulgaria and what it was like to live there on a daily basis. An immediate difference I noticed was that Mitko did not have a personal assistant as we would recognise here in the UK. There is no system in place for personal assistance in Bulgaria, there are one of two options: members of your family take on the role of personal assistance, or you end up in a state run group home with up to fifteen other people.
During the week, I got to visit a small group home in Lukovit to see first-hand what it was like for disabled people living in group homes in Bulgaria. I observed tremendous barriers in both physical and attitudinal access. Up to three people sharing a room, one very small shared kitchen and two shared toilets between ten people. Although, this was a recent victory for the group home, as previously they were all sharing one toilet (the second toilet was kept exclusively for staff). CIL Sofia have worked very closely with the young people of the group home to make changes towards more independent lives. This included teaching them about independent living, what it means and how they can achieve it and giving them aspirations to strive for. One of the biggest changes in the group home I visited was that previously it was run on the traditional Bulgarian model, where they had seven staff for approximately ten residents. This is not because the staff are needed, it is more to give other Bulgarians a job, rather than the right support to disabled people living in the group home. Working with the local government, CIL Sofia got all the unnecessary staff removed and encouraged independent living for the residents.
As part of my visit to the group home, I had the opportunity to meet with government social workers and understand the government’s view of disability in Bulgaria. I had noticed that a number of the residents were not wearing footwear and I asked the government officials why this was the case. Their response was ‘it is their choice’. I was quite surprised by this, and my mentors at CIL Sofia asked the officials to clarify their answer, as it was clear from speaking to the young people that some of them did not know the importance and reasons for wearing footwear. Therefore, it was not as simple as their own choice. The discussions with the local government officials were quite difficult. This demonstrates a clear difference with the UK, as Bulgarian society sees disabled people as having little or no contribution to make and openly uses phrases such as ‘invalid’.
Having said this, I had a discussion with the young people of Lukovit about my life in the UK and how I practice independent living every day. They understood the importance of independent living, the difference between being cared for and having a personal assistant and this is testament to their resilience and the work of CIL Sofia. One of the biggest shocks for me is that a number of the young people said independent living is possible in the UK because the UK loves disabled people. But in Bulgaria, I am not sure independent living is possible. This gave me the opportunity to share some of my experience of the barriers that the UK still puts in front of disabled people, including physical access, attitude or general apathy e.g. it is someone else’s problem. One of the main messages I tried to relay to the young people was that in the UK the expectations placed upon disabled people are high e.g. there is a clear expectation of employment, education and self reliance, which is great, but we need to have the independent living environment to go with it. I hope that these discussions inspired the young people, as when I had asked at the beginning of the day, what are their dreams and goals in life, this was met with silence. At first this made me upset, and then quite angry, that there are no expectations at all for disabled people in Bulgaria.
There was one striking parallel that I was pleased to find. Sofia had its own wheelchair basketball team and I was delighted to be invited to train with them during my visit. This was a fantastic opportunity to meet some great people and shows how sport can transcend culture and disability.
Whilst in Bulgaria, I had the opportunity to see the historical sights of Sofia, including the national history museum, parliament buildings, including the former communist party headquarters and, last but by no means least, the Alexander Nevsky Cathedral, which in itself was an education in accessibility in Bulgaria. I was able to find an access ramp, however, the doors to the cathedral were locked with no sign of where to go to get help and access to the cathedral. Luckily, a local lady who understood more English than I do Bulgarian, went to ask the church to open the door. Five minutes later, a priest came out. What I found quite surprising is that he did not speak or look at me. I am unsure whether this was deliberate because of my disability, or how they interact with the public in general. This whole day of sightseeing was made possible by my mentor Mitko, organising an accessible taxi, which I later learned was the only one in Sofia and possibly Bulgaria. This taxi service was privately run and when I asked my mentor why they do not have more, he said they do not see it as economically viable, as the firm does not believe there are enough disabled people to warrant the investment. I was quite taken aback by this, as I knew there are lots of disabled people in Bulgaria, but this shows how disabled people are not seen as mainstream society by the rest of their community.
I am pleased to see the work of organisations such as CIL Sofia trying to break down these significant barriers in the face of such adversity. I got the chance to share some ideas and see innovative solutions to seemingly insurmountable challenges. I could not have done this trip without the support of my personal assistant Lewis, and I hope that together we have shown the young disabled people of Bulgaria the importance of independent living and what can be achieved.
One surprising and really important lesson I took away from my visit to Bulgaria is that disabled Bulgarians are fighting every day to establish the rights that in the UK I feel people of my generation have taken for granted and if we are not careful, these hard won rights will be slowly eroded where we lose our independent living. Thank you to everybody who made this trip happen, it has been a once in a lifetime experience and I shall never forget it.
Photo: Tom Fadden in Sofia (Bulgaria), during Christmas celebrations