Siblings. Non tutti sanno che, quando si parla di fratelli e sorelle dei bambini con disabilità, fragilità o malattia, si usa questo termine anglosassone.
È così da trent’anni ed è entrato nella pratica comune, ma le parole hanno un valore e io mi sono sempre chiesta il perché di questa scelta. Personalmente, preferisco “fratelli” che, invece di sottolineare la differenza di questi rapporti, restituisce un senso di normalità e l’idea che non sia la malattia a definirci ma il modo di attraversarla come singoli e come famiglia. Certo, l’arrivo di una disabilità o di una malattia funziona sempre come l’uragano del Mago di Oz: ribalta una casa, la mette sotto sopra, sposta gli equilibri e costringe tutti a trovare appigli nuovi per restare ancorati a terra. È un viaggio che si fa insieme e che, inevitabilmente, porta a ridefinire i ruoli. Così succede che ci si stringa attorno a chi è più fragile, lasciando temporaneamente gli altri sullo sfondo.
Purtroppo, però, spesso gli “altri” sono bambini, i fratelli appunto. Che rivendicano il diritto a essere protagonisti e invece si sentono non visti, trasparenti. Per quanto ci si sforzi, capita quasi sempre. E l’aiuto deve arrivare anche dall’esterno.
In questo CasaOz cerca di fare la sua parte. Non a caso, tra le tante anime che la compongono c’è anche questa: essere un luogo dedicato anche ai fratelli, per riportarli in primo piano, aiutandoli a trovare una dimensione più giusta e ridando loro il senso di sicurezza che la malattia compromette. Il nostro focus sono le famiglie e tutti gli elementi che ne fanno parte, specialmente quelli meno robusti e strutturati. Le mamme, i papà, ma soprattutto i bambini. Ognuno ha le sue esigenze e se nella Quotidianità che Cura ne trascuriamo una, la normalità non siamo in grado di restituirla.
Per questo, serve investire in progetti mirati e specifici: continuare su questa strada e diventare ancora più bravi.
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