For all the love, living with a disability is hard
Sydney Morning Herald
Tuesday March 30, 2010
Chris Meney and the Catholic Church may say intellectual disability brings "enormous joy and happiness to families" ("Our society will be worse off if we reject Down syndrome children", March 29). Their religious views may lead them to that position, but the real world is harshly different.We profoundly love and value our daughters who are affected by Fragile X syndrome, the most common genetic cause of intellectual disability touching thousands of Australians. But even our mildly affected daughters are the first to say, "We would do anything to stop someone having to live with these problems". We are therefore working assiduously with Fragile X Association to expand genetic testing - prenatal, family testing and testing at birth - to prevent more children being born carrying Fragile X, and assist those born disabled.The association's gatherings would expose the reality the Catholic Church wishes to impose on families. Society does not embrace disability; children face discrimination and social isolation and adults lead difficult lives. The impact is lifelong and constant - doctors, therapies, searching for appropriate schools and jobs, finding friends, coping with difficult behaviour. Inevitably this affects family life, careers and very often marriages.There is great love also, but that love would prefer others not to have to endure the great difficulty, frustration and sadness that Meney's rosy picture paints over.
© 2010 Sydney Morning Herald