LANDELA
“Inkqubo yokuphulukana nelizwi lam yayinzima kakhulu kuba yayisenzeka ngokuqhubekayo, ndisiva ukuba amandla am okunxibelelana ngamazwi alahlekileyo kwaye kwangaxeshanye nokubandezeleka kokungaqondwa ngabo bakungqongileyo. Le meko yabangela ukuqhawuka konxibelelwano kwiincoko nosapho kunye nabahlobo. Kwabanzima nayo kuba yenzeka kwangelo xesha kwavela iingxaki zokuginya. Enyanisweni, eli nyathelo lesi sifo linzima kakhulu kuba uya kuqonda ubunyani besifo, kodwa isigaba ngasinye silungiselela esilandelayo, esinzima nakakhulu: kwimeko yam, ukulahlekelwa kwamandla okuphefumula. Le yindlela uFran Vivó, oneminyaka engama-34 ubudala kwaye wafunyaniswa ukuba une-amyotrophic lateral sclerosis (ALS) iminyaka emithathu enesiqingatha, achaza enye yezona zihlandlo ezinzima kakhulu zesifo esikhohlakeleyo kwabo bagulayo.
Ukuxelela kwethu kwi-audio ye-WhatsApp erekhodiweyo ngoncedo lomfundi wamehlo, ovelisa ngelizwi lerobhothi into ayibhalayo ngamehlo akhe, intshukumo yokugqibela yemisipha elahlekelwa ngabo bachaphazelekayo.
Uyise, uFrancisco Vivó, ukhumbula ixesha awathi ngalo unyana wakhe wayeka ukuthetha: “UFran wayenelizwi elimyoli, nethoni enomtsalane gqitha. Sonke samrekhoda ngothando olukhulu kwiividiyo zosapho kunye neerekhodi zembali yobomi bakhe. Ukuphulukana nelizwi kube ngamava abuhlungu kakhulu. Ndicinga ukuba wonke umntu ohamba kuloo mava angatsho oko. Kodwa kwesi sifo, esigcina ukuqhubela phambili okungenakulungiseka ukuya kwimeko eqhubekayo, into enye eyenzekayo: ukuba imeko nganye yangaphambili ilahlekelwa ukubaluleka. Kufuneka usoloko ufuna ngazo zonke iindlela ezikhoyo kwimeko yangoku”, uyavuma.
I-ALS sisifo esonakeleyo esichaphazela ii-neuron ezihambisa i-nerve impulses ukusuka kwi-Central Nervous System ukuya kwizihlunu ezahlukeneyo zomzimba. Kuyi-enclave engapheliyo kwaye ebulalayo eyenza ubuthathaka bemisipha eqhubela phambili ngokukhawuleza. Yeyona nto ixhaphakileyo kwi-pathology kwi-lair ye-neuromuscular enclaves. Unyaka ngamnye eSpeyin, ngokweenkcukacha zeSpanish Society of Neurology (SEN), malunga nabantu abangama-700 baqala ukuphuhlisa iimpawu zesi sifo. Isiqingatha sabantu abane-ALS bafa kwiminyaka engaphantsi kwe-3 ukususela ekuqaleni kweempawu, i-80% ngaphantsi kweminyaka emi-5, kwaye uninzi (95%) ngaphantsi kweminyaka eyi-10.
Xa belahlekelwa ukukwazi ukunxibelelana, izigulane ze-ALS zinokuzibonakalisa kuphela ngokufunda kwamehlo (ukulandelwa kwamehlo) ezivelisa kwakhona oonobumba okanye amagama abawakhomba ngamehlo abo ngelizwi eliqhelekileyo lerobhothi. Sisixhobo esiyimfuneko ukuze uhlale unxibelelene nehlabathi elibangqongileyo.
Kumzamo wokwenza olu nxibelelwano lube luluntu, i-Irisbond, inkampani yaseSpain eyingcaphephe kubuchwephesha bokulandela umkhondo wamehlo kunye nebenchmark kwi-Augmentative and Alternative Communication (AAC), kunye ne-AhoLab kunye neminye imibutho ephambili ye-ELA yaseSpain efana ne-adELA, i-AgaELA. , ELA Andalucía kunye ne-conELA Confederación, ADELA-CV kunye ne-ANELA, baye bakhuthaza inyathelo le-#merEgaLAstuvez ukuba negalelo kwi-AhoMyTTS Voice Bank. Ngale ndlela, nawuphi na ummi unokuzibhala kwaye aboleke ilizwi lakhe kumntu one-ALS. Nokuba izigulana ezisanda kufunyaniswa zingabamba ilizwi labo kwirekhodi ukuze ziqhubeke nokuzisebenzisa kwizixhobo zazo ze-AAC xa zilahlekile.
“Kubalulekile ukuvelisa kwakhona iingcinga ngethoni yelizwi apho abo bachaphazelekayo banokuzazi ngcono. Ukuba nothotho lwamazwi ahlukeneyo onokukhetha kuwo kuya kuba sisixhobo esikhuthazayo. Ndingathanda ilizwi elindikhumbuza elam,” utshilo uFran Vivó.
“Size neli phulo kunye nesebe lophando le-UPV elisebenza kwimiba yokuqondwa kwelizwi. Bane-app evumela ukuba urekhode amazwi ngesixhobo sobukrelekrele bokwenziwa kwaye wenze ibhanki yamagama. Nabani na onokungena kwinkqubo, elula ", u-Eduardo Jáuregui, umsunguli we-Irisbond, wachazela i-ABC.
Kuphela yiba ne-headset ene-microphone kunye nesixhobo esinebhrawuza yewebhu ehlaziywe kwinguqulelo yamva nje. Ngobhaliso olufutshane, kwiqonga le-AhoMyTTS, unokufikelela ekurekhodweni kwamabinzana ahlukeneyo ali-100.
Abagqugquzeli beli nyathelo bayahamba ukuze amanani oluntu ajoyine kwaye anike ukubonakala, njengomdlali webhola uMikel Oyarzabal okanye umpheki u-Elena Arzak, kunye nabadlali beqonga kunye nabalingisi abanamazwi awaziwayo njengoMaría Antonia Rodríguez Baltasar obiza uKim. Basinger, uJulianne Moore okanye uMichelle Pfeiffer; umsasazi kunye nomdlali welizwi uJosé Barreiro; UClaudio Serrano, ummemezeli kunye nomdlali wentengiso we-Otto ovela kwi-Simpsons, uDkt Derek Shepherd ovela kwiGrey's Anatomy kwaye, ngokuqinisekileyo, uBatman ngokwakhe kwi-trilogy kaChristopher Nolan. Baye banikela ngelizwi labo Iñaki Crespo, umlingisi wezwi likaJason Isaacs kunye noMichael Fassbender; UJosé María del Río owabiza uKevin Spacey, uDennis Quaid, uPocoyo okanye uDavid Attenborough; I-Dove Porcelain nguSarah Jessica Parker; Concepción López Rojo, ilizwi likaBuffy iVampire Slayer, uNicole Kidman, uSalma Hayek, uJuliette Binoche okanye uJennifer López.
“Injongo kukuphumeza ibhanki ebanzi kakhulu yamabinzana kwaye abantu abafuna ukuwasebenzisa banokufikelela kuwo simahla,” utshilo uJáuregui.
U-Adriana Guevara de Bonis, umongameli we-AdELA (uMbutho waseSpain we-Amyotrophic Lateral Sclerosis) iminyaka eyi-16, ucinga ukuba "yingcamango enkulu". “Ii-synthesizer zinomatshini kakhulu, zinelizwi lentsimbi kwaye azingomntu kakhulu. Uninzi lwezigulane zethu, ukusuka kwinqanaba elithile, ziyeka ukukwazi ukunxibelelana. Ukuba nale bank of voices kuninzi kobuntu”, utshilo kwincoko yakhe no-ABC.
Umongameli we-AdELA uqinisekisa ukuba elinye lawona maxesha anzima kwizitshixo kunye nokusingqongileyo kuxa bephulukana namandla okuthetha. “Kuyavuyisa kakhulu kwizigulana ukukwazi ukuvakalisa ilizwi elilaziyo okanye lelolungu losapho,” utshilo.
Ukulandelela kwamehlo kubandakanyiwe kwipotfoliyo yeenkonzo ezisisiseko zoMphathiswa wezeMpilo kwaye ngoku kuxhomekeke kuluntu ukuba luqalise iinkqubo zokubhida ukuze kube yinyani ukuba zonke izigulane ze-ALS zineteknoloji yokuqhubeka nokunxibelelana. Nangona bevela kwi-AdELA bagxeka ukuba uMphathiswa "uxhasa kuphela i-75% yesixhobo" kwaye i-25% kufuneka ihlawulwe ngumsebenzisi. “Sinengxowa-mali yomanyano kuba kwizigulana ezininzi loo mali ayifumaneki. Sikwabolekisa ngezixhobo simahla kwaye xa begqibile ukuzisebenzisa basibuyisele kuthi”, utshilo uAdriana Guevara de Bonis.
Kodwa isigulane se-ALS asifuni kuphela iteknoloji yokunxibelelana, kodwa kunye nokuhamba, kuxhomekeke kwisigaba abakuso: ukusuka kwizitulo zombane ukuya kwiilori zokutsala, kubandakanywa neeveni ezilungelelanisiweyo. "Uphando kufuneka luxhaswe, kodwa kunye neendlela zokubanika umgangatho wobomi", uqukumbelele umongameli we-AdELA.
Yenye yezingqinisiso zikaFran: "Okokuqala bendiza kucela uphando ngakumbi kwaye, kwinqanaba letekhnoloji, ukuba inokuba nezivamvo ze-alarm ezinovelwano kakhulu kwintshukumo yamehlo xa ndilele phantsi kwaye ndingaqhagamshelwanga kumfundi wamehlo. inkqubo, kuba okwangoku sele ndilahlekelwe kuko konke ukushukuma komzimba, ngaphandle kwamehlo am,” utshilo. Ngale ndlela ebekwazi ukunxibelelana kwaye asazise xa enesidingo kwaye engabekwa phambi komfundi wamehlo, kuya kuba yimfuneko oko,” wongeza utata wakhe.
