Termin „wysoko funkcjonujący_a” został wprowadzony w latach 80. XX wieku, i od tamtej pory był skrótem (nie diagnozą) opisującym osoby z autyzmem posiadające silne umiejętności językowe i nie mające niepełnosprawności intelektualnej. Dzisiaj ten termin stosowany jest szerzej – nie tylko w kontekście neuroróżnorodności – ale również uzależnień.
Jednak te terminy, mimo że są powszechne, nie dają nam dokładnej informacji o tym, dlaczego konkretna osoba potrzebuje wsparcia ani jakiego wsparcia potrzebuje. Nie daje nam w zasadzie, żadnych informacji, których można by było użyć w konstruktywny sposób.
Profesor Andrew Whitehouse, w przeprowadzonym w 2019 roku badaniu[i] podkreślił, że „ten termin całkowicie pomija trudności, z jakimi borykają się te osoby na co dzień”. Badania były prowadzone w kontekście autyzmu, ale ich wynik jest równie trafny we wnioskach również dla każdego innego kontekstu.
[i] https://journals.sagepub.com/doi/full/10.1177/1362361319852831
Nieadekwatność oceny funkcjonalności
Termin „wysoko funkcjonujący_a” zakłada, że osoba posiada pewne funkcjonalne umiejętności, które w rzeczywistości może nie mieć. Najczęściej klasyfikowane jako „wysoko funkcjonujące” są osoby, które mają wysoki iloraz inteligencji (IQ) lub osiągają sukcesy akademickie i/lub zawodowe. Jednak ani jedno, ani drugie nie świadczy o tym, że radzą sobie dobrze w innych aspektach życia.
Korzystanie z tej etykiety może umniejszać doświadczeniom i wyzwaniom, z jakimi może mierzyć się osoba neuroAtypowa na co dzień, prowadząc do mylnych oczekiwań wobec ich zdolności do funkcjonowania w różnych środowiskach.
Z kolei etykieta „nisko funkcjonujący_a” obarczona jest przesądem braku umiejętności czy talentów. Jednym z najbardziej szkodliwych założeń jest przekonanie, że osoby niekomunikujące się werbalnie nie mają nic do powiedzenia. W rzeczywistości wielu_e aktywistów_ek np. autyzmu komunikuje się za pomocą iPadów, laptopów czy innych urządzeń. Historia nauczyła nas, że zdolność do mówienia była mylnie utożsamiana z inteligencją. Jest to błędne założenie, które krzywdzi osoby korzystające z alternatywnych metod komunikacji. Najlepszym przykładem był Stephen Hawking!
Problem z etykietami
Etykiety funkcjonalne mogą wpływać na dostęp do usług i wsparcia. Na przykład mogą być używane jako argument przeciwko dodatkowemu wsparciu w szkole, gdy dziecko może nadal potrzebować pomocy w takich umiejętnościach jak zrozumienie instrukcji czy interakcja z rówieśnikami.
Podstawowym problemem związany z etykietami funkcjonalnymi jest jednak fakt, że zakładają one pewną ścieżkę rozwoju, schemat dla osoby neauroAtypowej. Na przykład, dzieci kierowane do szkoły specjalnej w związku z ich rzekomym „niskim funkcjonowaniem” i obawą, że nie poradzą sobie w tradycyjnym systemie edukacji. Ilu dzieciom i ich rodzicom przedstawia się błędne „ścieżki”, które mogą ograniczyć ich pełen potencjał? Etykietowanie często prowadzi do pozbawiania ludzi praw i możliwości.
Maskowanie - ukrywana rzeczywistość
Ci, którzy są postrzegani jako „wysoko funkcjonujący-e”, są po prostu bardzo dobrzy w maskowaniu. Maskowanie to umiejętność, której uczyliśmy się od dzieciństwa, najczęściej w wyniku procesu otrzymywania od świata nieustannych wiadomość, że nasze naturalne zachowania są niepożądane.
Dostosowując się do tych komunikatów, uczymy się ukrywać nasze naturalne impulsy i próbować zachowywać się w sposób, który mniej irytuje i dziwi innych.
Pete Wharmby opisuje maskowanie jako „świadome lub podświadome wysiłki osoby autystycznej, aby wydawać się neurotypowa dla ludzi wokół niej. Jest to działanie wymagające ogromnych zasobów i jest wyczerpujące do podtrzymania”.
Po co nam te etykiety?
Takie etykiety właściwie pytają: „jak bardzo jesteś normalny_a?” Darujmy je sobie.
Podaję pod rozwagę jeszcze jedno pytanie: kiedy następnym razem, ktoś ci powie o tym, że jest osobą autystyczną, ma ADHD czy zespół Tourette’a, jak będzie twoja słowna reakcja?
Napisz w komentarzu, lub na email: kontak@ponadschematami.org.
Możesz też skorzystać z listy „PYTANIA/INSPIRACJE”:
Z jakimi etykietami spotkałeś_aś się w kontekście własnego doświadczenia?
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