"It's a disability blindness. People see one disability and they don't see anything else ... It's an error of thinking, and it can be a fatal error of thinking."
Michele, Maia's mother
Maia and her girlfriends from high school get together as often as they can for afternoon tea. Sometimes there’s a party. Last time the theme was pink and Maia put a pink rinse in her hair and went together with her twin sister Ariella.
Maia enjoys listening to books on her iPod and she likes to receive a hand massage from her young carers, who take her shopping or to the park.
It’s a good life, says her mother, Michele. Maia, who uses a wheelchair because of her cerebral palsy and has a mild intellectual disability, is valued in her community and adored in her family, which also includes her father and younger brother.
She is usually a happy, engaging person with a mischievous sense of humour and an enthusiastic take on life.
That changed suddenly during two prolonged episodes of delirium in Maia’s early 20s, which also revealed some entrenched prejudices in the health system towards people with challenges like Maia’s.
“The first time it was completely out of the blue,” says Michele. “She didn’t know her own name and she didn’t recognise family members. She was saying things that were really distressing.” Maia was also screaming, obviously in pain.
But Michele struggled to be heard when she tried to convey to the hospital how unusual the behaviour was for her daughter. “Instantly, from the first day, we came up against an attitude of, ‘Isn’t she always like that?’” Michele recalls.
She found it “profoundly insulting” that Maia's whole lifestyle, personality, and network of relationships were disbelieved, and her distress disregarded amid the low expectations that the doctors and nurses had for someone with a disability.
The family’s dissatisfaction provoked conflict with the treating team, particularly after the hospital identified and treated some physical problems and wished to discharge Maia, while her psychological distress and confusion continued. “I said, ‘You can’t just send her home like this’,” says Michele. “They told us to put her in a nursing home. We were scandalised by that … They were devaluing her out of existence.”
Michele, who is herself a doctor, eventually found a specialist clinic that looks holistically at the mental health and other needs of people with an intellectual disability. It was not a panacea but it provided a strong starting point to identify the physical problems behind much of Maia’s distress.
But Michele, who would like to see knowledge about disabilities embedded more clearly within medical and nursing curriculums, believes that without her professional experience she may never have been able to navigate a health system that insists on viewing people through the lens of their principal diagnosis.
“I work in a public mental health service and when [clients] are physically unwell and they go into hospital they get the same nonsense,” Michele says. “It’s a disability blindness. People see one disability and they don’t see anything else. If it was Maia’s twin sister, people would go to the ends of the earth to help her, as they should. It’s an error of thinking, and it can be a fatal error of thinking.”