LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\nLGMD ile ya\u015farken benim i\u00e7in ilk zorluklar sosyal ve altyap\u0131 engelleriydi. \u00d6rne\u011fin<\/p>\n
\u00dclkemizdeki eri\u015filemezlik nedeniyle e\u011fitimimi tamamlayamad\u0131m. D\u00fc\u011f\u00fcnlere, aile toplant\u0131lar\u0131na, do\u011fum g\u00fcnlerine ya da bu t\u00fcr \u015feylere gidemedim. Bu y\u00fczden \u00e7ocukluktan itibaren ba\u015fkalar\u0131yla sosyalle\u015fmeyi kestim. Daha \u00e7ok evimin d\u00f6rt duvar\u0131 aras\u0131nda b\u00fcy\u00fcd\u00fcm.<\/p>\n
Dahas\u0131, benim i\u00e7in fiziksel zorluklar, kendi ba\u015f\u0131ma hi\u00e7bir \u015fey yapamamam. El, ayak ve ba\u015f parmaklar\u0131m d\u0131\u015f\u0131nda v\u00fccudumun hi\u00e7bir yerini hareket ettiremiyorum. Neredeyse her konuda yard\u0131ma ihtiyac\u0131m var, bu y\u00fczden tamamen ba\u015fka birine g\u00fcvenmek zorunday\u0131m. G\u00fcnler ge\u00e7ti ve \u015fimdi fiziksel durumum daha kritik hale geldi. \u015eu anda benim i\u00e7in fiziksel olarak en b\u00fcy\u00fck zorluk, hayat\u0131ma tam bir tutkuyla devam etmek istememe ra\u011fmen nefes alma sorunum.<\/p>\n
En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir? <\/strong>:<\/p>\nBir g\u00fcn \u00e7ok sevdi\u011fim en k\u00fc\u00e7\u00fck k\u0131z karde\u015fimin de ayn\u0131 hastal\u0131\u011fa yakaland\u0131\u011f\u0131n\u0131 \u00f6\u011frendi\u011fimde hayat\u0131m bir gecede de\u011fi\u015fti. Benim ya\u015fad\u0131\u011f\u0131m ac\u0131 dolu gelece\u011fin ayn\u0131s\u0131n\u0131 onun i\u00e7in de hayal edebiliyordum - bu beni isyan ettirdi. D\u00fcnyan\u0131n geri kalan\u0131 ayn\u0131 tabloyu g\u00f6stermiyor - neden bizim \u00fclkemizde bu ayr\u0131mc\u0131l\u0131k durumu? Neden hayat\u0131n en ba\u015f\u0131nda her \u015fey i\u00e7in 'hay\u0131r' duymak zorundalar? Bu toplumun bir par\u00e7as\u0131 olduktan sonra bile uzakla\u015fmaya ba\u015flad\u0131lar. T\u00fcm bu sorular kafamda dola\u015f\u0131rken hayal k\u0131r\u0131kl\u0131\u011f\u0131na u\u011frad\u0131m. Sonra zihinsel \u00e7er\u00e7evemde k\u00fc\u00e7\u00fck bir de\u011fi\u015fiklik oldu ve \u015eubat 2008'de \u00fclkemin Ba\u015fbakan\u0131na bir mektup yazd\u0131m.<\/p>\n
Nisan 2009'da internet ve insanlar\u0131 bir araya getirmenin kolay bir yolu olan Facebook arac\u0131l\u0131\u011f\u0131yla d\u00fcnyayla ileti\u015fim kurma f\u0131rsat\u0131 buldum. Facebook'taki bir arkada\u015f\u0131mdan ald\u0131\u011f\u0131m ilhamla mektubu m\u00fcmk\u00fcn oldu\u011funca \u00e7ok insana ula\u015ft\u0131rmaya ve savunuculuk yoluyla Engelli Bireylerin haklar\u0131 konusunda onlar\u0131 bilin\u00e7lendirmeye \u00e7al\u0131\u015ft\u0131m. B\u00f6ylece 17 Temmuz 2009'da Banglade\u015f'te sistem de\u011fi\u015fikli\u011fi i\u00e7in savunuculuk yoluyla a\u011f olu\u015fturarak Engelli Bireylere daha iyi bir ya\u015fam sa\u011flamak amac\u0131yla g\u00f6n\u00fcll\u00fc bir kurulu\u015f olan Banglade\u015f De\u011fi\u015fim ve Savunuculuk Nexus Derne\u011fi'nin (B-SCAN) yolculu\u011fu ba\u015flad\u0131. Ayr\u0131ca fark\u0131ndal\u0131k yaratmak i\u00e7in bloglarda yazmaya ba\u015flad\u0131m. Alman haber yay\u0131nc\u0131s\u0131 Deutsche Welle'nin 2011 y\u0131l\u0131ndaki uluslararas\u0131 blog yar\u0131\u015fmas\u0131nda aday g\u00f6sterildim ve d\u00fcnyan\u0131n en iyi ikinci pozisyonunu elde ettim.<\/p>\n
B-SCAN bir b\u00fct\u00fcn olarak muazzam bir tepki ald\u0131, bir\u00e7ok ki\u015fi endi\u015felerini g\u00f6sterdi. Duvar\u0131n i\u00e7indeki hayat\u0131m\u0131z de\u011fi\u015fti. Bir g\u00fcn insanlar\u0131 bilin\u00e7lendirecek ve endi\u015felendirecek ve b\u00f6ylece engelli insanlar\u0131n haklar\u0131n\u0131 elde etmelerine yard\u0131mc\u0131 olacak \u00fclke \u00e7ap\u0131nda engelli bireyler i\u00e7in Haklar ve Fark\u0131ndal\u0131k kampanyalar\u0131 hayal etmeye ba\u015flad\u0131k.<\/p>\n
Her sabah kalkt\u0131\u011f\u0131mda g\u00f6zlerimi alan ilk manzara a\u00e7\u0131k mavi g\u00f6ky\u00fcz\u00fc oluyor. Bu d\u00fcnyan\u0131n ger\u00e7ekten g\u00fczel oldu\u011funu, hayat\u0131n g\u00fczel oldu\u011funu hissediyorum. G\u00f6ky\u00fcz\u00fcne dokunmak istiyorum. A\u00e7\u0131k g\u00f6ky\u00fcz\u00fcn\u00fcn alt\u0131nda aya\u011fa kalkmak ve derin bir nefes almak istiyorum. Bunu yapabilece\u011fimi hi\u00e7 d\u00fc\u015f\u00fcnmemi\u015ftim, sadece hayal ettim ve diledim. Bu dilek, bu irade g\u00fcc\u00fc bana g\u00fc\u00e7 veriyor, iyi bir hayat ya\u015famam i\u00e7in bana ilham veriyordu. Ve bu irade g\u00fcc\u00fc bana sadece hayat\u0131m\u0131n en b\u00fcy\u00fck ba\u015far\u0131s\u0131 oldu\u011funu d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm B-SCAN'\u0131 hayal ettirdi. B-SCAN beni a\u00e7\u0131k g\u00f6ky\u00fcz\u00fcn\u00fcn alt\u0131na \u00e7\u0131karan motivasyondur.<\/p>\n
LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? <\/strong>: <\/strong><\/p>\nBana LGMD te\u015fhisi konuldu\u011funda bunu hi\u00e7bir zaman bir sorun olarak g\u00f6rmedim. Ayn\u0131 \u015fey k\u0131z karde\u015fime de olunca hayat\u0131m de\u011fi\u015fti. Onun da ayn\u0131 \u015feyleri ya\u015fad\u0131\u011f\u0131n\u0131 g\u00f6rd\u00fc\u011f\u00fcmde benim i\u00e7in yepyeni bir resim, yepyeni bir bak\u0131\u015f a\u00e7\u0131s\u0131 oldu. Bu \u00fclkedeki t\u00fcm \"Sabrina \"lar\u0131, onlar\u0131n hayatta kalmalar\u0131n\u0131, ac\u0131lar\u0131n\u0131 ve sefaletlerini d\u00fc\u015f\u00fcnmeme neden oldu. T\u00fcm bu d\u00fc\u015f\u00fcnceler i\u00e7imde yeni bir Sabrina do\u011furdu. Bir insan olarak daha g\u00fc\u00e7l\u00fc oldum.<\/p>\n
\u0130nsanlar\u0131n bak\u0131\u015f a\u00e7\u0131lar\u0131n\u0131 de\u011fi\u015ftirmek ve buray\u0131 Engelli Bireylerin haklar\u0131n\u0131 tesis etmeleri i\u00e7in uygun bir yer haline getirmek istiyorum.<\/p>\n
D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz? <\/strong>:<\/p>\nLGMD ile ya\u015famak hayat\u0131n sonu de\u011fildir. Herkes bu konuda daha fazla \u015fey \u00f6\u011frenmelidir. Bu, ilgili her web sitesini inceleyerek yap\u0131labilir. Herkes daha \u00f6nce oldu\u011fu gibi hatta daha da fazla \u00f6zg\u00fcrce ve mutlu bir \u015fekilde ya\u015famaya devam etmelidir. Ya\u015fad\u0131\u011f\u0131n\u0131z her an\u0131n tad\u0131n\u0131 \u00e7\u0131karmaya \u00e7al\u0131\u015f\u0131n. Hala bir tedavi yoksa \u00f6nemli de\u011fil. Hayal k\u0131r\u0131kl\u0131\u011f\u0131 sadece hayat\u0131n\u0131z\u0131 kendinize bir y\u00fck haline getirir. Hayat ger\u00e7ekten g\u00fczeldir. E\u011fer bir sorun varsa, mutlaka bir \u00e7\u00f6z\u00fcm\u00fc de vard\u0131r. Sadece onu aramal\u0131y\u0131z. Her zaman pozitif kal\u0131n.<\/p>\n
LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\nMutlulu\u011fum s\u0131n\u0131r tan\u0131mayacak \u00e7\u00fcnk\u00fc sonsuza dek ilk kez ilk ya\u011fmur damlas\u0131nda kap\u0131dan d\u0131\u015far\u0131 ko\u015fabilece\u011fim. Dahas\u0131, e\u011fer iyile\u015firsem herkesin tedaviden haberdar olmas\u0131n\u0131 sa\u011flayaca\u011f\u0131m, b\u00f6ylece onlar da benim gibi iyile\u015febilecekler.<\/p>","protected":false},"excerpt":{"rendered":"
08\/27\/2015 Name:\u00a0\u00a0\u00a0 Sabrina \u00a0\u00a0\u00a0\u00a0\u00a0AGE: 32 COUNTRY:\u00a0 Bangladesh LGMD Sub-Type: \u00a0LGMD […]<\/p>","protected":false},"author":1,"featured_media":1001,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[52,29],"class_list":["post-999","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-bangladesh","tag-lgmd2d"],"acf":[],"yoast_head":"\n
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