Report from Mima Ruzicic, Novi Sad, Serbia and Montenegro, About the Situation of Personal Assistance Users and Students with Disabilities

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Mima Ruzicic, 2005-04I am Milica Mima Ruzicic, born in 1978 with cerebral palsy in Novi Sad, a capital city of the north Serbian province Vojvodina, lived in a village Zabalj with my family till my 18. Then I entered high school of philology in Sremski Karlovci, about 40 km far from my village. My parents paid my old land lady for the assistance in my daily activities and pushing me to school. It lasted for 4 years. I did not know anything about the independent life philosophy, but I strongly felt what meant independent decision making about your own activities and time. In one moment it became very hard when she started to influence on my decision. Besides, she was about 50 years older than me. Fortunately, I met there three of my best friends, and it was the most careless period of my life regardless of the state decision makers were slowly putting the whole nation in the cage. I lived the freedom, read and wrote as never before and after.

Than I faced with the fact that it could not continue and had to except the situation that my 50 years old mother, who went in pension earlier because of that had to come to University as my helper and leave the rest of the family. It caused a lot of crisis and I was sleepless for 1.5 month accused my father for doing nothing to make our situation easier and move the family in Novi Sad, where I planned to study Serbian language and literature. So, I got 3rd award at the national completion at the field of linguistics and literature for secondary school pupils and directly entered University. My mother and I had lived in the student dormitory for four years. The University campus and the town itself were inaccessible without proper transportation and any service. I was a member of CPI Association in Novi Sad attending few international artistic conferences and events, translated the novel MY LEFT FOOT by Christi Brown in Serbian, but without an active participation in the PwD movement till September 2000 when was Handicap International summer camp for university students and intellectuals with disability. In September 2000 also my mother was discovered arterial sclerosis, and 2 months later I had 2 choices to stay in a village without assistance, but to support my family as much as I can, or to come back to University also without any assistance. My best friend assisted me for one week, but it did not work. I asked one more friend to be my assistant and I intended to pay for her services, but she refused money. Then I asked Ivana, my PA, you met in Sarajevo, to live and work with me in the dormitory. The only material satisfaction she had was the place to live for free and by time food costs covered. We both were in a very difficult position. No matter we made an agreement about our roles and techniques she should use, I was felt bad because of the material part of our agreement thinking that anything I gave was not enough, what was not always realistic.

Besides, in December 2000 a group of members and associates of Counseling Centre for psycho-social support to people with disabilities LIVING UPRIGHT, formed by Handicap International 3 months before (now Centre LIVING UPRIGHT - further CZU), founded Novi Sad Association of Students with Handicap (now Novi Sad Association of Students with Disability - further NSUSH) with a motion to work on improvement and eqalisation of the study condition for all students with the accent on those with disability. I was its first co-coordinator 2.5 years and then its fund raiser till October 2004. First 9 months was more than hard for we had no funds to supply the office we got from the University, so all activities were done from my room. The first campaign I Want to Go to Uni too! started in summer 2001 and during it we implemented the first project of data base collecting of secondary pupils with disability and their support to continue the education. It brought us the first furniture and the equipment I needed the assistance in the house only in the morning and in the evening for the rest of the day I was at the office, University or business trips assisted by my colleagues and other students. It was possible for people felt the need to change something.

The NSUSI built the awareness about the disability issue at University, initiated the education about accessibility, universal design, sign language, equal usage of books and literature, equality in public speech. It became responsible for students with disability, and slowly becomes a sort of service in partnership with University and with its support. We initiated the adoption of 4 rooms and toilets in the dormitory for 4 students using wheel-chairs, and curves cutting in the University campus that is ending now, but still we did not manage to provide accessibility and support service in an adequate way. 9 students with disability are living with their PAs at the student dormitory, but only in 2 cases they are not the family members or boyfriend and girlfriend.

We have organized a few local campaigns and seminars, researched the needs of blind and deaf students and published few booklets and books. My colleague Milica Bracic and I have been working at sign language and terminology standardisation, disability concept, biographies of women with disability and equality in public speech. I specialized the language standardisation in 2003 with the Dictionary of Disability. In cooperation with the Students of Psychology Club, it started sign language school for college and University students I Want to Tell You Something!, but is not the formal subject for there is no person in Serbia educated to teach sign language within academic standards.

I am satisfied of its results but a lot of work is in front of us: personal assistance, transportation, books and accessibility and conditions for exchange providing. A small number of young people with disability speak other languages or use computer. We are working now with UNICEF on Youth peer education of 20 young people with and without disability about reproductive health. Now we have 50 students with disability

In November 2004 I started to lead CZU, actually the 6-language campaign for the social distance towards people with disability in Vojvodina reduction which ends these days. The Center was founded in February 2002 for support to people with disability and advocacy for equal rights and opportunities. From September 2000 and February 2002 it offered psycho-social support to people with disabilities and their families as one of 6 counseling centers in Serbia. After that it had less capacity and started to organize educational and cultural events, research and campaigns. This campaign is the starting point for the supports service for PwD in Novi Sad creation starting with personal assistance for 10 users in September in Cooperation with Centre for Independent Living and advocacy process for proper public transportation and assistive technologies along with the individual support. The organization is small and has 10 members, 5 active and this spring should pass through strategic planning for the next 3 years.

I am now postgraduate of Linguistics working more then ever and traveling a lot. In the budget for the campaign and other smaller projects we predicted the honorarium for my personal assistant and she is also paid by my state support for other person help that is now 41 EUR, which is a forth for the salary for the person who assists 120 hours per moth, and I need more than 320 hours per month. My assistant works for about 100 Euros, place for living and food. Besides, she is going home and getting married in Autumn and in the next 2 months I have to hire another person or even two, and find funds for it and way to change my life for mutual living with the assistant in one room is pretty difficult, and privacy does not almost exist.

Life can be tough here for people who need personal assistance. I have a 52 year old colleague with multiplex scleroses who needs 24 hours of assistance per day. Her parents are older than 70, and her father has a heart condition and must not bear the burden heavier then 3 kilograms. My friend had the right to homehelp twice a week for one hour. Now, she managed to provide it for five times per week, also for an hour without weekends. She is very active and an organizer of many cultural events in our town. The financial support she receives from the state is little larger than mine and the family income is not enough to cover all the expenses and payment for a worker. I would like to ask you for the advice what to suggest or do. I do not see the possibility to start the service earlier because of funds and education we need.

Milica Mima Ruzicic
Centre "Living Upright" - Novi Sad
Ise Bajica 6
21000 Novi Sad
Serbia and Montenegro
Tel/ Fax +381 (0) 21 42 42 91
e-mail; uspravnst@EUnet.yu;
Personal e-mail: ruzicicm@EUnet.yu
Mobile: +381 (0) 63 82 93 799

The Association address is:
Faculty of Law
Trg Dositeja Obradovica 1
21000 Novi Sad
Serbia and Montenegro
Tel/ Fax +381 (0) 21 350-377 Ext. 374
The WEB SITE is under construction.

University of Novi Sad
Trg Dositeja Obradovica 5
21000 Novi Sad
Serbia and Montenegro
Tel/ Fax +381 (0) 21 350-622