Meet Jelena Milosevic, from Belgrade (Serbia)

 

Jelena Milosevic

Jelena Milosevic

I am 30 years old and I graduated from the University of Belgrade (the Faculty of Philology, the Department for English language and literature) in 2002. I live with my parents in Belgrade, my home-town. As a freelance translator I have worked for many companies and organizations, including organizations of persons with disabilities. In addition to this, I am the Vice-President of the Muscular Dystrophy Association of Belgrade. I am proud of being an activist with a few other organizations, including the Centre for Independent Living of Serbia, and the representative for Serbia on the IFOPA International Presidents Council. .

What is your personal experience of disability?

I have an extremely rare disease, called Fibrodysplasia Ossificans Progressive (FOP), and I was registered as the first and only person with this condition in former Yugoslavia in 1990. There are two of us with this diagnosis in Serbia today. One of the consequences of FOP is the fact that I am a wheelchair-user and that I cannot spend more than about four hours in my wheelchair due to the very specific position of my body. In spite of this, a long time ago, I decided not to let FOP prevent me from doing the things I love, such as graduating from University, being an active citizen, going to theatres, concerts etc. all with great support, mostly my Mother.

Is there an area of Independent Living that you are especially interested in?

I am especially interested in the Personal Assistance Service. I participated in a few projects realized by CIL Serbia for the duration of which I had personal assistants. Unfortunately, I don’t have a personal assistant anymore and it prevents me from being as active as I would like to be. These projects have made me realize how important it is to have this service, which still does not exist in Serbia as part of the system.

Who has influenced you the most, and how?

My Mother, with her stamina, energy and determination; Jeannie Peeper, the founder and President of the International FOP Association (IFOPA). When it was formed, it had only 2 members and today it has about 400 members from all over the world; Dr Frederick Kaplan from the University of Pennsylvania who helped me a lot of times with his not only medical but friendly advice, too; many disability activists from Serbia, as well as from Europe and USA, with their persistence, skills and resourcefulness.

What personal achievement are you most proud of?

I am most proud of graduating from the University of Belgrade, of my work as a translator and a disability activist in these turbulent times, as well as of staying positive in spite of numerous challenges I have had to face.

What motivates you to get up in the morning?

People I love and respect and work that inspires me.

What makes you laugh?

My two cousins, children’s comments on everyday life situations, a witty book or movie and theatre shows.

What makes you angry?

Hypocrisy, arrogance, impudence, uneducated and primitive people who believe they are the smartest people in the world.

What do you do to relax?

Read books, go to the theatre and concerts, listen to good music, spend time with people I enjoy being with

Where were you and what were you doing 10 years ago?

I was a young and naive University student who believed that all people were nice and sincere and that I would be a full-time employee translator in 10 years.

Do you think anything has changed for people with disabilities in the last 10 years?

I know that a lot of things have changed but I am also certain that many more things could and should have been changed. The fact is that in today’s Serbia there are several important disability laws, a few more adapted vans, many more ramps and persons with disabilities on the streets but there are too many leftovers from the past regime in general and from the time when persons with disabilities were thought to be only passive and mute people in need of somebody else’s help

 

 

1 Comment

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