Ongehoord: Vlaamse Gebarentaal (VGT) in de afasiediagnostiek
Stel je voor: van de ene op de andere dag verlies je het vermogen om jezelf uit te drukken en de wereld om je heen te begrijpen. Afasie, zoals we deze verworven taalstoornis noemen, ontstaat meestal na een beroerte en tast de verbindingen tussen taalgebieden in de hersenen aan. Voor iemand die de Vlaamse Gebarentaal als meest toegankelijke taal gebruikt, ontstaat er een extra problematiek: hoe stel je vast welke taalvaardigheden zijn aangetast wanneer de beschikbare afasietesten niet zijn ontwikkeld voor een visueel-gestuele taal? Onderzoek van Nina Driesmans (Vrije Universiteit Brussel) toont aan dat gebruikers van de Vlaamse Gebarentaal met afasie in een diagnostische blinde vlek terechtkomen.
VGT: een taal tussen vele gebarentalen
Met “gebarentaal” denk je misschien aan één universele taal die iedereen gebruikt om met elkaar te communiceren, maar dat is een groot misverstand. Net zoals gesproken talen bestaan er verschillende gebarentalen, elk met een eigen geschiedenis, woordenschat en grammatica. In tegenstelling tot gesproken talen, die geluid en gehoor gebruiken, maken alle gebarentalen gebruik van bepaalde parameters, zoals handvorm, de plaats waar een gebaar wordt uitgevoerd, beweging, handoriëntatie en niet-manuele kenmerken, zoals bewegingen van het gezicht, hoofd of lichaam. Veel gebarentaligen schakelen ook dagelijks tussen verschillende talen en manieren van communiceren. Ze moeten zich daarbij vaak aanpassen aan de dominante gesproken taal in hun omgeving.
Sinds 2006 wordt de Vlaamse Gebarentaal (VGT) officieel erkend als taal van de Dovengemeenschap in Vlaanderen en Brussel. Het is de eerste taal van 6.000 inwoners in dat gebied. Ook horende mensen kunnen VGT leren, bijvoorbeeld om te communiceren met dove familieleden of vrienden, of om professionele redenen, zoals in het onderwijs of als tolk. Niet iedereen die VGT gebruikt, beheerst het Nederlands even goed. Voor sommigen blijft dit beperkt tot de geschreven variant. Dat is eigenlijk zo gek nog niet, want een tweede taal beheers je zelden even goed als je eerste taal .
Wat gebarentalige hersenen ons kunnen vertellen
De systematische review in het onderzoek van Nina Driesmans laat zien dat gebarentaal in de hersenen grotendeels hetzelfde taalnetwerk gebruikt als gesproken taal, vooral in de taaldominante linkerhersenhelft. Toch zijn er verschillen. Omdat gebarentaal via zicht, beweging en ruimte wordt verwerkt, spelen ook gebieden die betrokken zijn bij visuele en ruimtelijke informatie een grotere rol. Bij een hersenletsel kan schade aan de linkerhersenhelft leiden tot een klassieke vorm van afasie, terwijl schade aan de rechterhersenhelft ruimtelijke aspecten van gebarentaal kan verstoren. Dat vraagt om een aangepaste aanpak bij de diagnostiek, aldus Nina Driesmans.
Wanneer woorden én gebaren tekortschieten
Het is in de acute fase, ongeveer de eerste zes weken na het ontstaan van de taalproblematiek, dat een correcte en snelle diagnose het verschil kan maken. In Vlaamse ziekenhuizen maakt men vooral gebruik van de ScreeLing en de Nederlandse Benoemtest om afasie in kaart te brengen, aangezien het merendeel van hun patiënten Nederlandstalig is. Maar wat gebeurt er met de VGT-gebruiker? Hoe diagnosticeer je dan afasie bij iemand wiens eerste taal een gebarentaal is? Hoe kan je alsnog communiceren met deze persoon? En hoe bepaal je vervolgens welke revalidatie nodig is?
Een vicieuze cirkel
Resultaten van een survey uit hetzelfde onderzoek, afgenomen bij twintig Vlaamse medische professionals, tonen hoe (neuro)logopedisten en neurologen in de praktijk een VGT-gebruiker zouden diagnosticeren. Op moment van afname bestond er geen gevalideerde, gestandaardiseerde test voor de Vlaamse Gebarentaal, en die is er nog steeds niet. Diagnostici zijn daardoor vaak aangewezen op alternatieve methodes. Zo kan een familielid of vriend van de patiënt helpen vertalen, een VGT-tolk kan worden ingeschakeld, of men kan op schriftelijke wijze trachten te communiceren.
Maar ook die oplossingen hebben hun beperkingen. Een familielid is geen getrainde tolk en geen expert in afasiediagnostiek. Een professionele tolk kan de communicatie tussen patiënt en hulpverlener wel ondersteunen, maar kan een medische professional niet vervangen. Bovendien zijn professionele VGT-tolken, net als eerste taalgebruikers, schaars. Ook schrijven in het Nederlands is geen vanzelfsprekend alternatief, want een taal die voordien al niet vloeiend werd verworven, was al gebrekkig voor het ontstaan van de taalproblematiek.
Het onderzoek van Nina Driesmans legt nog een ander probleem bloot: een gebrek aan ervaring leidt tot een gebrek aan vraag, en dat gebrek aan vraag houdt het gebrek aan kennis in stand. De ondervraagde diagnostici geven aan dat ze weinig training hebben gekregen over gebarentalen en afasie bij gebarentaligen. Omdat ze in hun dagelijkse praktijk relatief weinig VGT-gebruikers met afasie tegenkomen, ervaren ze ook minder nood aan bijkomende opleiding. Daardoor blijft de kennis beperkt.
Het resultaat is een vicieuze cirkel waarin een kleine en ondervertegenwoordigde groep patiënten, namelijk de VGT-gebruikers, nog moeilijker zichtbaar wordt. Dat heeft niet alleen repercussies voor de diagnose. Als een taalstoornis zoals afasie niet correct wordt herkend, kan ook de behandeling minder goed aansluiten op wat een patiënt nodig heeft.
Niet wachten tot de patiënt er is
Volgens Nina Driesmans ligt de oplossing niet in het vertalen van een bestaande Nederlandstalige afasietest. Een VGT-test moet rekening houden met de structuur van een visueel-gestuele taal. Hiervan bestaan al voorbeelden in andere landen (bv. de BSL-ALIAB test voor Britse Gebarentaal). Een aangepaste afasiediagnostiek voor VGT-gebruikers begint bij kennis. Diagnostici zouden minstens een basisopleiding moeten krijgen in gebarentalen en afasie. Ook zijn gevalideerde diagnostische instrumenten nodig die rekening houden met de unieke eigenschappen van de visueel-gestuele modaliteit. Vooral samenwerking met experts, universiteiten en hogescholen, VGT-gebruikers en de dovengemeenschap is daarbij belangrijk.
Want wanneer iemand na hersenletsel zijn of haar taal verliest, moeten diagnostici kunnen vaststellen wat er precies beschadigd is. Voor VGT-gebruikers betekent dat: niet alleen testen op wat iemand kan zeggen of opschrijven, maar op een taal die beweegt, ruimte gebruikt en ook zonder geluid volledig taal is. Zolang VGT, en bij uitbreiding gebarentalen wereldwijd, in de afasiediagnostiek nauwelijks wordt meegenomen, bestaat het risico dat patiënten niet alleen hun taal verliezen, maar ook de juiste toegang tot zorg.
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