I’m Csaba Kiss. I was born with a brain haemorrhage. As a result, I became a person with a physical disability and high support needs. I also have a severe speech impairment.
What does that actually mean?
If someone is a disabled person with high support needs, it means they need some help, big or small, in almost every area of life. In my case this mostly means physical help. For example, when I’m thirsty, someone has to pour me a glass of water and give it to me through a straw, because I can’t do it on my own. To many people this may sound very dramatic, but I’m capable of much more than this text, or the way I look, would suggest. A lot of things can be solved with patience, willpower and a little ingenuity.
I completed primary school at the Pető Institute (the conductive education institute in Budapest); I attended it for 11 years. If someone had asked the me of those days whether I liked going there, all I would have said was: “Well, too bad.” Yet once I was there in the classroom with the others, I did like being there. I owe that school a great deal, and I think I still benefit today from what I received and learned there. Above all: perseverance and tenacity.
I continued my secondary education in a mainstream school, which at the time was quite a curiosity. The head teacher said they would admit me, but that I should know it was an experiment. I can report that the experiment was a success. I passed my school-leaving exam in 1996. I definitely wanted to keep studying, because it was clear that I could only get by in life by using my head. I completed an intermediate-level desktop publishing course, and after that I completed my studies at the Sola Scriptura Theological College, because I have always been interested in religion and faith.
After that I stayed at home for a few years and wrote articles about faith for the local village newspaper. At the same time, I never found my place in my home village. No real friendships or social ties developed, except with my immediate family. It is true that since 1993 I had been going to the camps for people with physical disabilities run by MEVISZ Bárka, where I met lots of people my age and made friends. But those friendships were mostly limited to ten days of the year. So over time the thought took shape that I wanted to move to Budapest.
I applied to the institute at Marczibányi tér, today called the Rehabilitation Institute for Physically Disabled People (MEREK). Around that time I was admitted to the technical informatics programme at the Gábor Dénes College of Information Technology. In the end I only completed the coursework and did not get the degree. I regret that now, but at that time my life was going through huge changes. Having broken free of the safe bonds of my family, I had to learn the little everyday things of life in Budapest, and then, once I left the institute’s framework, the art of independent living. It wasn’t easy. That is exactly why getting my degree slipped into the background.
After that, since I couldn’t stay at MEREK any longer – it is a rehabilitation institute, after all – a rather bold plan took shape in my mind: to live independently, like the majority of society, instead of spending my whole life in an institution. When I told one of my best friends, he said it was the kind of plan you have to believe in. So I applied to the Institute’s transitional group home, which was in Gazdagrét.
From then on, the way of life that I still live today took shape. Now I’ll briefly describe my everyday life. I have to admit that I live more or less the same way as you do, dear reader. In the morning I get up and the daily routine begins: washing, going to work, shopping, taking care of errands and paperwork. In the evening I usually get home tired, and the evening routine begins.
Except that I mentioned that peculiar expression: a person with a physical disability and high support needs. That label means I need a great deal of help in everyday life. It starts with getting up and wanting a coffee that I can’t make for myself. That’s why I need so much help. These days I try to arrange it in three ways. There is an institutional system called the Támogató szolgálat (Support Service). Its staff come to a person’s home and help with daily tasks, housekeeping and managing everyday life. That’s really good, but unfortunately the availability of this service is very limited: in practice it is only available on working days and only during office hours. But I am physically disabled every day, 24 hours a day – and not only me, but a great many people. That is why we have to find volunteer or paid assistants by various alternative means – at least those of us who can take on the existential risk. In the last year or two I have been able to get a taste of the security of personal assistance, which is still unknown in our country (I plan to write more about this).
At the beginning of 2026 I earned my degree in special needs education, specialising in intellectual disability. For almost ten years I have been working at MEOSZ (the National Federation of Organisations of People with a Physical Disability) as an expert by experience.