When my life started to change because of my illness I was 30 years old, in a rock&roll relationship and with a small child. I was just preparing to start to plan my new life goals, new insane ideas and a new peace. At that time nothing was going my way or the way I have planned on the contrary my life turned upside down, the new condition frequently pushed me into depressions at the beginning. How am I supposed to hang out with persons that are used to seeing me healthy, which play or show should I visit, that doesn’t have a lot of stairs? Where should I park so that I wouldn’t have to walk long distances to the supermarket or office for example? Which hour of the day should I attend an event so that my walk would be as less visible as possible and so on and on.
Now I don’t really want to remember those days. What also hit me hard at that time was the fact that less and less friends were contacting me and even my mobile phone went silent. I don’t judge my friends for that because I know that everybody wants to live its life with as little problems as possible, I even believe that I would react the same way myself, if I would be healthy. My disability slowly grew and each year that went by I needed more help and my independent life has shrunken scarily. Those that began to take care of me were my family, my husband, my mother and I, at least for the things that I stubbornly still could do alone. Then there was a series of horrible events, but looking to them from today’s point of view they seem absurdly funny and even today me and my assistant laugh over them.
It was just before the New Year day. After a couple of hours of writing in my studio I decided to drove back home, at that time I was still able to drive by myself, and I notice it again the gas light was blinking so I had to go to the gas station. I was able to open the little hatch, grab the gas fuse I stumbled around a bit and then fell to the ground along my car. I was immediately able to see that the boys who came to help me what were they thinking of me ‘so fancy with her fancy coat she must of have been drinking with her friends or even at work on this sinful morning’. In my mind the distress without any help, my painful hips and the look of the boys to which it was completely irrelevant to explain that I am not drunk I am just in need of assistance.
I wanted an assistant, who I could have beside me to provide me with the help needed and when I need it, all that would be done during assistants work time and that he would be appropriately paid for his work as an assistant. Assistant will provide me help when I need to get dressed up, help with putting my shoes on also when I go shopping, will escort me to the doctors, hospital and physiotherapy, who would drive me to a mountain called Toško čelo, where I can do my daily exercise and stretching and after that to my studio where I can work on my poetry, to cook coffee in between, take me to the bathroom or on a visit to the city center, the film show, exhibition, an assistant with whom I can establish good business relationship and mutual trust, and last but not least to help me to go to the gas station when necessary.
If I put it shortly to enable me with the possibility of an Independent life the way I want to live it and to feel safe when assistant is around.
For the Programme Independent living of disabled I have heard from a friend, who has the same condition as I do, after that I have applied to YHD. The association is comprised and run by disabled individuals, who believe and act in accordance to the philosophy of Independent Living. Members and non members as well are united on accordance of their differences with the aim to be more effective in achieving our goals. We understand our disability as a social status, which is automatically written to anybody that doesn’t fit into definition and norms of a society. Disabled individual is therefore trapped within social relations that keep them in a deprivileged position. That is why we must and can overcome.
Now it’s been two years since I have personal assistance. My health condition is deteriorating rapidly, but on the other hand my creativity is growing everyday also thanks to my assistant. One of YHD founders is also Miss Elena Pečarič whit whom I have been able to establish an honest friendship in the mean time. She has also presented me with the basic facts of the Law on Personal Assistance, which is still being held in the Parliamentary process. As far as I know YHD was included in the preparation of the new Law although the association had quite a few critical comments to the proposed text, which were not accepted during the preparation of the Law. The Law itself is unnecessarily bound to the Law on Long-term care, for which it is known that it will be very expensive and the implementation of the Law is therefore questionable. Personal Assistance could be defined as a separate service in a separate Law;
Personal assistance could be completely detached service in a special law because the resources available are already sufficient enough, especially if some funds would be taken from the FIHO assets (Foundation for the financing of disability and humanitarian organizations), but the Ministry of Labor, Family and Social Affairs is not willing to do that. Without any justification, why not, despite the fact that we know that this are dedicated public funds that are now being spent on a lot of unnecessary things.
In any case the Ministry for labour, family and social affairs has planned that the Law on Personal Assistance comes into action only in 2013. How we will survive until then, nobody knows.
My Personal assistant is employed by YHD and his salary is partly covered from the office for employment, partly from YHD and partly from the donations of the users. I wish that in the future the profession of Personal Assistant would be firmly codified and well-paid I also wish to live in a relaxed society, which enables individuals for a open minded society and human relations with fresh, warm tones, which are actually all very dear to us all.
The article is written by Barbara Pešut, published on 15.05.2011 in the daily newspaper Delo