Fight for real independent life


Centre for Independent Living (CIL) Bulgaria has been fighting for possibilities for disabled people in Bulgaria to live really independent since it was established in 1995. The struggle continues since people with a disability still don’t have the financial and practical means to live their life the way they want. I spoke with several members involved in CIL. This article starts with a demonstration organized by CIL on Thursday May 9th. Goal of the demonstration: a good legal arrangement with regard to personal assistance.

Chairman Kapka Panayotova talks to the press about the aim of the demonstration

Getting a proper law with regard to personal assistance for Bulgarians with a disability is the main issue of Centre for Independent Living Bulgaria. To put pressure on the government, some ten members of CIL gathered before the Ministry of Labour and Social Policy in Sofia. Several media were present to cover the demonstration. I was there too at the invitation of Kapka Panayotova, the woman being interviewed on the pic. She’s the chairman of CIL and a woman who speaks out her heart. The demonstration lasted about one hour and its result was that the empowered minister promised to have a talk with a delegation of CIL the week following the demonstration. But, he also stated that the current law about personal assistance, which is insufficient according to CIL, was not his personal choice.

Kapka is also very active in the European Network on Independent Living (ENIL). ENIL has participatory status with the Council of Europe and is represented in the Advisory Panel of the EU Fundamental Rights Agency’s Platform. The Sunday following the demonstration, she flew to Brussels for another meeting on Monday. But on Thursday, she took the time to tell me something more about CIL Bulgaria.

More than 20 years of CIL Bulgaria in action

When CIL was founded in 1995, it only had nine members, consisting of a group of disabled people who wanted to live independently from their family. In 2019, CIL has 50 members. Although this still seems a small number, CIL is very active and has influence in the Bulgarian society – regretfully, more on society though CIL members’ target is the government. CIL shows the negative aspects of the Bulgarian policy towards disabled people. Another purpose is to raise conscience with the non-disabled about the wishes and possibilities with regard to independent living. Kapka tells how they work around this theme.

‘In 2000, we started with action based research. Meaning fieldwork to gather stories and experiences of disabled people. This information was meant to show the Bulgarian policy was not well designed towards people with a disability. And it still is not, despite the fact Bulgaria ratified the UN Convention on the Rights for Persons with Disabilities. We especially work around article 19 of the Convention: disabled people do have the right to live independently. That is not the case in Bulgaria. Many disabled people still live in institutions. The environment is still not adapted to people with a disability. Children with a disability can’t visit a normal school.

‘There are many people who wish to live independently. Personal assistance is a necessity to realize this. It remains our most important action goal. Other things we work around are inclusive education, the accessibility of the environment. These action points have a connection with personal assistance too. We develop different kinds of activities. Monitoring of policy, information campaigns, direct actions that attract media attention. We remain a watchdog with regard to policy and funds for disabled people. We are one of the most active members within ENIL. For instance, we introduce petitions to the European Parliament.’

So far for the formal part about CIL. Let’s have some active members speak about what problems they experience in daily life and why they are active within CIL.

Mihail Nedkov and Vanya Pandieva

Mihail (l) and Vanya (r)
 
I interviewed both Mihail and Vanya at the same time and a part of my questions were the same for both as well. To speak with Mihail: ‘Ladies first.’
 
Vanya

‘I am 45 years old and a graduated psychologist. When I was a student, I met Kapka at a conference. There I heard for the first time about the Independent Living philosophy and I felt so happy to see that I am not alone in my struggle to live as any other person without disability. That’s how I became involved with CIL. I started working for CIL as a project manager, mostly on the field of personal assistance. Then CIL started a pilot project about personal assistance scheme with the help of international donors. I travelled a lot all around Europe to exchange experience about personal assistance. I was lucky to visit even the Scandinavian countries where PA is very well developed and people with disabilities have huge experience on the matter. For example, I will never forget the days which my fellows and I spent in ULOBA, near Oslo, where the biggest cooperative for Independent Living is located. I was so impressed by what our Norwegian friends have achieved that I was looking forward to go back to Bulgaria and to do protest actions until we change the system. All these international visits motivated me a lot. But at the same time they also made me feel depressed, because independent living in Bulgaria still looks more like a dream than reality.

‘I was born normally and functioned normally. When I was two years old, all of a sudden I started behaving anxious, something very unusual for me. My family didn’t know what was the matter. It turned out I had a benign tumour in my spine. After an operation, my hands and feet don’t function well anymore. I chose to study psychology when I noticed that fellow students liked to talk with me about their problems and thoughts. Psychology is a profession that is close to my attitudes towards people and it helps me a lot to learn more about myself as well. I succeeded to overcome my own worries and complex concerning disability and I still enjoy the feeling to discover new things about human nature. Currently, I have a private practice as a psychologist and work with any kind of people, with and without a disability.

‘I am glad to live in Sofia.Things are changing slowly concerning accessibility, transport and conditions to live independently. But the situation is much better than in the countryside. I like to travel with the subway. It gives me the feeling of freedom to move and to meet people. My dreams? To be able to live independently one day, but I’m not very optimistic. I try to live from day to day and enjoy life. I don’t have big plans. The reality turns out to be far more different from the plans most of the time. I do love travelling, meeting with friends, attending cultural events. Just simple ordinary things.’

Mihail

‘I am 42 years old and also studied psychology. I’ve worked as a psychologist for some years and that’s when I met Vanya and learned about CIL. Other things I’ve done in my working life were training seeing-eye dogs and making music in a band on a cruise ship. Currently, I work for a radio station that is run by and destined for blind people.

‘The reason to choose to study psychology was to find out about psychologist mechanisms within myself. At the university one only learns about the theory. Daily life is the real learning practice. I regard my life as a big voyage in which I surprise myself constantly by the things I do. As a psychologist one meets people who are sad, who suffer. I can’t see the expression of the clients which is an important lack. As a psychologist, I have an image of myself. That image doesn’t correspond with how other people see me. They think for instance I’m smart, which is not always the case.

‘I started to lose sight at the age of 7. I have a degenerative eye disease. I lost 90% of my sight very quickly. At the moment, only 2% is left. I was born in Sofia and love the city. I always want to return here. It’s not the most accessible place, but I know my way around. A problem is that people don’t use the environment well. Take for example a bus driver. Bus drivers don’t park their bus well to let people in.’ Vanya adds: ‘And that way one can’t use the ramp either.’ Mihail: ‘Another example are the cars on the pavement. But, let’s face it: everywhere in the world the situation is more difficult for the disabled. 

‘My plans? I’ve got two plans. The first is getting married soon and the second is I’m becoming father quickly after. I fear my family is going to plan my plans. I will have to work more seriously and will have less rest. My wife is also visually impaired, but sees better than I do.

‘I like to say one last thing. Visually impaired people can learn non-blind people one thing: if you don’t see something, it doesn’t mean it isn’t there. Blind people keep on seeing invisible things constantly.’

Mitko Nikolov  
 
 

‘I am 42 years old and still live with my parents. At the age of 16, I broke my neck when I jumped into the river. My parents live in a small town called Vidin and every boy there jumps into the river … I’m currently studying business management/entrepreneurship. I travel between Sofia and Vidin every other week. I don’t like Sofia. I’m used to life in a small place. My parents are 71 and 72. My father says I am getting too fat, but the truth is he is getting older to help me out of my wheelchair each time. I don’t have personal assistance. I fully depend on my parents. If I want to go to the café, my father must drive me. It makes me feel depressed. I want to live independently. For instance have diner or breakfast when I want it. With my pension of 150 euro/month I can’t pay personal assistance myself.

 ‘I have been working for CIL for 17 years. First in Vidin. Now I cooperate together with Kapka. We are a team. She calls herself the bad cop. I’m the good cop. Kapka doesn’t have a good relationship with the Ministry of Labour and Social Policy. She’s quite straightforward in her way of speaking and that upsets them. I’m more diplomatic. My aim is to change the attitude of the government towards us from within. First of all, the government must change its way of thinking. They do understand our situation, but they speak with different tongues. If the minister is willing to change the law, the prime-minister says no. I spoke to the minister after our demonstration about the personal assistance law. He said that the current law was not proposed by his ministry, but by parents and the ombudsman. As to the meeting with the minister one week later: we informed him about the demands of the protesters and explained to him why the needs assessment methodology is not suitable for people with extensive personal assistance needs. The minister committed to review the methodology after three months of its implementation. An expert group will assess the impact of the methodology based on its 3-months implementation. And finally, the minister promised to have CIL experts involved in this expert group. 
 
‘The problem with the current law on personal assistance is that it’s not suitable for disabled adults who need lot of assistance in their daily activities. It only allows personal assistance for 8 hours a day. I need more. My parents are not in favour of personal assistance. They wish to take care of me themselves. They think they can do it better. But, I don’t want to see my father as my personal assistant. He is my father and should stay that way!
 
‘I am an optimistic person, but I don’t see any future for myself with the current policy. When my parents die, I should have to live in an institution. It’s the last thing I want.’
 
Copyright text and pics: Johan Peters, May 2019 - ...