After my last visit to Sofia my lips are still cracked. Why? Because I participated in a meeting where I heard about the life stories of people confined to living in institutions. Life stories which rang a bell because I have had the same experience.
John Evans, one of the pioneers of the independent living movement was in Bulgaria for a conference on deinstitutionalization. He used the opportunity to visit CIL Sofia’s office where a meeting with independent living followers was organized.
I’d like to share with you my life story as a disabled person who has more than enough experience with institutions;
I was born on the same date as Shakespeare – 23rd April 1974. I spent my first year with my family at home. Then, due to ‘well-disposed’ doctors, my parents decided to take me to a home for children with different impairments. My biological mother (who I found many years later) has told me that the hardest moment was when they had undressed me in front of her and put other clothes on me, like they stamped me. I spent the next 4 years in this home. My parents knew where I was the whole time, but they did not try to take me back as they were convinced by authority figures this was the best place for me.
At the age of five I was moved to a place which recently became popular in a horrific way after a documentary film by a BBC journalist – Mogilino. This home was predominantly accommodating children with mental health problems but such people solely with physical disabilities (like me). By that time I was able to articulate only one word (‘aunt’) and I wasn’t able to walk but crawled instead. Either there was no time for the home’s staff to work with me, or the system was like this – I don’t know. But you can imagine the vicious practices there when I tell you that none of the teachers wanted me in their group! Only one finally accepted me as she noticed some ‘minor potential’ in me. Later she told me that when she was observing my behavior at the playground and with the other children, she understood that my delayed physical and vocal development was due to negligence by the previous home staff. And indeed, only a few months later of proper care, I caught up with the expected vocabulary from a child of my age. At the age of seven I was moved again – to another home.
When I was twenty years old I was hired by the owners of a local private company. For two years I lived in an apartment with a landlord. Of course the place was not adapted to my needs and this was a tough period as I had no personal assistant (unknown term at this time!) and had constantly to rely on my landlord’s help. All this was making my life so difficult that I fell into despair. There was nobody to provide me with any help, support or advice.
Then I had to move another time – again in an institution. But I was lucky to start a training course for computer skills (paid by a friend) and this somehow opened the way for new opportunities in my life. I finished the course and started studying in university – one subject, then another. Until then I had accepted life in an institution as normal. I did not think I could have a normal life – with my own home and even own family! My surroundings have always suggested a life in poverty and misery and it is incredible how easy you take this as normal.
After graduation I started working in the local library and this was another eye-opening event in my life. The next such event was my first meeting with CIL Sofia members. Communicating with them, participating in campaigns and trainings they organize, not only changed my life, but my self-confidence was improved, I started believing that I am capable of having a successful, normal life, I can dream and fulfill my dreams, I saw myself as a valuable being.
Today I still live in an institution as I keep on being rejected by the municipality to have my own home. This is frustrating, but I am determined to continue the fight for my rights and those of the other disabled people.