Waarom we liever het woord 'handicap' dan 'beperking' gebruiken, legt Johan Van Holderbeke uit in dit 10 jaar oude, maar nog steeds relevante, opiniestuk.
Imbeciel. Idioot. Debiel! Zwakzinnige oligofreen!
Excuseer beste lezer... ik wil u geen verwijten maken. Want bovenstaande woorden klinken ons in eerste instantie als scheldwoorden in de oren. Nochtans zijn deze woorden ooit, door meestal goedmenende mensen, ontworpen om onze doelgroep te benoemen. Ze hadden ook alle hun eigen betekenissen. Deze benamingen waren bedoeld om hen te kunnen onderscheiden van ander groepen die in de 'asielen' waren ondergebracht: landlopers, 'krankzinnigen', 'schizofrenen'...Tegen dit laatste bijvoorbeeld, waar men mensen met een 'gespleten geest' mee benoemde (mensen met zware psychische problemen), wou men zeggen dat er ook mensen waren met 'weinig' (oligo) geest. Tegenover de 'krankzinnigen', die krank of ziek waren in hun zinnen of geest wou men de 'zwakzinnigen' zetten, de mensen die een zwakke geest. Men wou hen apart benoemen om hen ook als aparte doelgroep te kunnen benaderen, behandelen en hun situatie te verbeteren. Meestal begon men er mee vol goede bedoelingen.
Maar helaas, dat was buiten de volksmond gerekend. Slechtwillende mensen maakten van deze woorden alras scheldwoorden om hun medeburgers te kleineren. Dit werd vorig jaar (in 2011 - red.) nog eens duidelijk. In een filmpje voor de opvoedingslijn werd de term 'rosse mongool' echt wel bedoeld als scheldwoord tussen een boel andere. Ook die term is in de loop der jaren meer een scheldwoord geworden dan een term om een groep mensen aan te duiden met een .... tja... wat moeten we nu weer zeggen.... mensen met een handicap of een beperking... Heel lang was de omschrijving personen met een verstandelijke 'handicap' een heel algemeen aanvaarde omschrijving. Maar nu moeten we het woord 'beperking' gebruiken om de nieuwste ontwikkelingen te volgen. Is dat zo vanzelfsprekend? Hierover wil ik met jullie enkele overwegingen delen.
Laat ik maar met de deur in huis vallen en met het risico de hele goegemeente op m'n dak te krijgen. Persoonlijk heb ik nog steeds de voorkeur om de uitdrukking 'personen met een verstandelijke handicap' te gebruiken. Ik heb daarvoor een aantal negatieve redenen t.a.v. het woord beperking, en een aantal positieve t.a.v. het woord handicap.
Wat is een beperking?
Een bepreking is een limiet, een afbakening. In 'Van Dale online' staat 'beknotting, begrenzing' als uitleg. Nog ander verklaringen spreken over 'het iets niet mogen of kunnen'. Hoe je het ook draait of keert, dit woord duidt op iets wat niet kan, op iets negatief. Sommige mensen willen dit woord gebruiken omdat het woord 'handicap en gehandicapte' zo'n negatieve connotaties hebben gekregen. Net zoals al die oudere termen scheldwoorden geworden zijn is 'gehandicapte' dat voor sommige mensen ook geworden. Eén van de omschrijvingen die ik vond zegt dat 'beperkingen' verwijzen naar vaardigheden die niet of niet meer optimaal gebruikt kunnen worden ten gevolge van een onderliggende stoornis of stoornissen. Deze omschrijving komt uit het model van de wereldgezondheidsorganisatie (WHO). Daarop kom ik straks nog terug. Wanneer iemand mij een goede uitleg kan geven waarom het woord beperking beter zou zijn ben ik zeker bereid te luisteren, maar ik hoorde nog geen uitleg die mij kan overtuigen. Het woord handicap daarentegen...
Hand in cap
Wanneer we naar de oorsprong van het woord handicap gaan kijken, komen we in Engeland terecht. Daar bestond een soort loterij waarbij mensen hun handen in een hoed moesten stoppen om een briefje te trekken (hand in cap). Dat was om iedereen gelijke kansen te geven in de loterij (denk ook aan het uitloten voor de militaire dienstplicht zoals het in België bestond - zie het boek en de film 'De Loteling'). Later is de term overgegaan naar de paardensport. Daar bestaat hij trouwens nu nog. Om alle paarden gelijke kansen te geven, gaf men de zwakkere paarden een voorgift. Essentieel heeft het woord dus een achtergrond van het geven van gelijke kansen. Merkwaardig is wel dat men in het hedendaagse taalgebruik spreekt over paarden die met een handicap starten, en dat dit de beste paarden zijn.
De WHO maakt in haar definitie een reeks van termen: disease, impairment, disability, handicap. We zouden dit kunnen vertalen als: een ziekte geeft aanleiding tot een stoornis, die geeft aanleiding tot een beperking en die kan aanleiding geven tot een handicap. Ziekte of stoornis is een medisch-biologisch gegeven. Deze kunnen aanleiding geven tot een beperking in het materieel-dagelijks functioneren. Ze kunnen mij beletten bepaalde dingen vlot te doen. Handicap daarentegen is een sociaal gegeven. Je wordt pas gehandicapt door de manier waarop je omgeving naar je kijkt, of door de manier waarop je jezelf voelt in heel die situatie, doordat je (als gevolg van de beperking) niet meer op gelijke voet kunt deelnemen aan het maatschappelijk leven.
Nemen we bvb. iemand met trisomie 21. Medisch-biologisch gezien is er een afwijking in het chromosomenaantal. Dat geeft aanleiding tot een stoornis gekend als trisomie 21. Die stoornis heeft/geeft een aantal (mogelijke) beperkingen en/of speciale kenmerken: mogelijk hartfalen, grote lichamelijke soepelheid, gezichts- en gehoorsproblemen, minder verstandelijk functioneren.Vele mensen nu kijken naar deze groep mensen als 'sukkelaars', met woorden als 'och here toch', 'het is toch erg'... op die manier worden deze mensen apart gezet en krijgen ze een 'handicap'. En doordat de omgeving hen als dusdanig behandelt gaan ze zich ook vaak 'gehandicapt' voelen.
Ik probeer dit te verduidelijken met een voorbeeldje.
Kijken we naar iemand die een bril draagt zoals ikzelf. Biologisch-medisch gezien is er een afwijking aan de ogen. De spieren van de oogbol zijn niet meer in staat om voldoende kromming van de lens te verzorgen zodat we alles scherp zouden zien. Dat geeft een beperking. Ik kan binnen mijn omgeving niet meer alles doen wat ik zou willen. Ik kan geen auto meer rijden, want ik zie de verkeersborden niet meer, ik kan geen boeken meer lezen want de lettertjes zijn te klein. Gelukkig kan die beperking redelijk makkelijk verholpen worden. Je zet een bril op je neus. Ben ik nu gehandicapt? Ik voel me niet zo. Het dragen van een bril is zo’n gewone zaak geworden. Het belet me niet om op voet van gelijkheid deel te nemen aan het maatschappelijk leven. Niemand ziet dit nog als een handicap.Maar het zou wel kunnen dat iemand zich gehandicapt voelt. (Wanneer we hierbij daarentegen denken aan een hoorapparaatje... Iemand die een hoorapparaat draagt is in de ogen van meer mensen gehandicapt dan iemand die een bril draagt.)
Ooit werd ik geconfronteerd met een discussie tussen een moeder en haar ± twaalfjarige dochter. Blijkbaar moest de dochter voor het eerst een bril dragen. En dat zinde haar overduidelijk niet. Wat wil je ook (en nu interpreteer ik misschien wel een beetje), in de ogen van al haar leeftijdgenoten kon ze nu veel moeilijker meedingen om de mooiste te zijn, want zo’n bril op je neus staat toch helemaal niet. Ze zou niet kunnen deelnemen aan het normale maatschappelijke verkeer in haar leefwereld. Ze voelde zich heel duidelijk gehandicapt(1). Het onbegrip van haar moeder vergrootte het verdriet er om alleen nog maar.
Hiermee is ook meteen aangegeven dat handicap een duidelijke sociale dimensie heeft. Of iemand zich gehandicapt voelt, heeft veel te maken met de wijze waarop anderen naar hem of haar kijken. Dat beïnvloedt ook de manier waarop iemand naar zichzelf kijkt.
Dit is niet zomaar een academische discussie. Aan veel stoornissen of syndromen die oorzaak zijn van een verstandelijke handicap kunnen we heel vaak weinig doen. Bij een persoon met trisomie 21 kunnen we het overtollige chromosoom niet wegnemen. Ook aan de beperkingen kunnen we vaak slechts in beperkte mate iets doen. Personen met trisomie 21 zullen altijd een lager niveau van algemeen functioneren hebben dan hun leeftijdsgenoten. Dit niettegenstaande hun niveau ook wel heel veel onderling verschil kan vertonen. Maar aan de handicap kunnen we wel iets doen. We kunnen wel werken aan de manier waarop de maatschappij omgaat met, kijkt naar deze personen. Op die manier kunnen we werken aan een inclusieve maatschappij, een maatschappij waar elke persoon een eigen en gewaardeerde plaats heeft.
En dat is waar we met STAN, Trefpunt VerSTANdelijke handicap, willen voor ijveren. Of die plaats nu in het BuSO is dan wel in het gewoon onderwijs, of die plaats nu thuis is den wel in een leefgroep, of die plaats nu in een gewoon arbeidsmilieu is dan wel in een beschutte werkplaats (inmiddels omgedoopt tot maatwerkbedrijf), of die plaats nu in een G-sportclub is dan wel in een reguliere sportclub.... dat doet er niet toe. Personen met een verstandelijke handicap moeten een eigen en gewaardeerde plaats krijgen daar waar zij zich zelf het best bij voelen. Dan kunnen we er misschien voor zorgen dat zij zich niet meer gehandicapt voelen, dat zij niet meer gehandicapt zijn.
Johan Van Holderbeke
Voorzitter van de afdeling Gent-Eeklo van STAN – Trefpunt VerSTANdelijke Handicap
[1] Ten tijde van de Harry Potter-rage echter, waren er jongeren die een brilletje wilden dragen zoals hij, ook al hadden ze dat eigenlijk helemaal niet nodig. Hier speelde het omgekeerde effect.
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