Give Us a Chance: Supporting Families of Children with Disabilities in Bosnia and Herzegovina

Speeches Shim

USAID established the first-ever specialized service center for families of children with disabilities in Bosnia and Herzegovina in May 2014. Today there are seven. By establishing these centers and offering such support, USAID helps build stronger families, especially stronger women, and improves social inclusion of persons with disabilities. For more info on these centers, see project fact sheet.

Video Transcript 
INES (VO) Prije 17 godina sam rodila sina u šestom mjesecu trudnoće. Jedino što sam tada čula jeste da neće preživjeti. Ali nisam željela povjerovati u to i odlučila sam da se borim za njega i zajedno sa njim. Denis je rođen jako mali sa cerebralnom paralizom, epilepsijom i hidrocefalusom, tada meni potpuno nepoznatim dijagnozama. To je trenutak kad zapravo shvatiš da život nikada neće biti onakav kakav si sanjao, a da umjesto njega dolazi neki novi za koji te niko nikada nije spremio. Ali, kreneš mu u susret ne sluteći koliko te prepreka i nerazumijevanja zapravo čeka na tom putu. Dok sam se borila za život svog sina, nisam ni primijetila da oko nas postoji sistem koji jasno povlači granice, ostavljajući nas na nekoj potpuno drugoj strani. Denis ovdje ne može ući, ovamo ne pripada, treba u neku instituciju zatvorenog tipa, gdje je porodica potpuno nepoznat i nebitan pojam, gdje vrijeme stoji, život stvarno gubi smisao. Mnogo toga više nije bilo ni za mene. Postalo mi je zapravo jasno da mi je društvo namijenilo jednu jedinu ulogu. Ja na to ne pristajem. Biti majka ne znači pristati na život bez posla, bez karijere i bez sebe. Tada je rođena ideja servisnog centra, kao odgovor državi i sistemu koji nam ne daje podršku. To je mjesto gdje roditelji poput mene mogu ostaviti svoje dijete po prvi put u životu nekome za koga znaju da će se adekvatno brinuti za njega. A zauzvrat dobiju šansu. Šansu da odu doktoru, da odu u kupovinu, da izađu sa prijateljima. Da rade sve ono što vi radite bez razmišljanja svaki dan, jer vam društvo pruža podršku u tome. Nama ne. INES (u kameru) Moja borba nije uzaludna. Moja borba nije ni završena. Moja borba je borba za šansu. Moja borba su male promjene. Prvi Servis centar otvoren je 28. maja 2014. godine, uz podršku USAID-a. To je prvo udruženje ovog tipa u BiH koje objedinjuje porodice djece i osoba sa poteškoćama u razvoju, bez obzira na dob, stepen i vrstu poteškoće. sa vizijom da im osigura mjesto u društvu dostojnog čovjeka Usluge Centra su besplatne . Danas centri pružaju pomoć za preko 800 porodica koje imaju člana sa poteškoćama u razvoju. U proteklih 10 godina USAID je uložio 2,5 milion dolara u programe za unapređenje kvaliteta života ljudi sa poteškoćama u razvoju pomažući njihovu integraciju u društvo. ----- INES (VO) 17 years ago, I gave birth to my son in my sixth month of pregnancy. The only thing I could hear at the time was that he wasn’t going to survive. I chose not to believe them and decided to fight for him; to fight with him. Denis was born very small with cerebral palsy, epilepsy and hydrocephalus. Back then, all conditions completely unknown to me. That’s the moment you realize that life will never be the way you dreamt it would be, that instead of that dream, comes a different life that you could never have prepared for. You give life the benefit of the doubt, unaware of the obstacles and misunderstandings that wait for you ahead. While I fought for my son’s life, I didn’t notice that there’s an entire system around us that creates boundaries, leaving us completely deserted on the other side. Denis can not enter here, he does not belong here, he needs to be in a closed off institution, where family is completely unknown and useless, where time stands, and where life loses all meaning. A lot of it wasn’t for myself anymore. It became clear that society set for me a single role to play. But I did not accept it. Being a mother does not mean that I agree to a life without work, without a career and without myself. That was when the idea of a service center was born as a response to a state and system that does not support us. It is a place where parents like me can leave their children to someone who they know will adequately take care of them for the first time in their lives. In return, they are given a chance. A chance to become a doctor, to go shopping, to go out with friends. To do everything you do on a daily basis without a single thought because society supports your lifestyle. It doesn’t support ours. INES (to camera) My fight is not in vain. My fight is not over. My fight is to be given a chance. My fight is for small changes.

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