“They don’t treat you like a person. They treat you like an ‘it’.”
That’s how one man with an intellectual disability described his encounters with medical professionals.
He was one of 18 adults with intellectual disability, and eight support people, interviewed for a study on their experiences –particularly in genetic healthcare.
The findings reveal consistent exclusion, confusion, and distress –urging a shift toward more inclusive, respectful care.
The research team, GeneEQUAL, included experts in genetics, ethics and education, and self-advocate Julie Loblinzk – the project involved people with intellectual disability as equal partners.
Participants described how health professionals often spoke to their support people instead of them. Medical information was rarely shared in accessible formats like plain language or Easy Read documents, leaving patients unsure about testing, diagnoses or follow-up care.
“It’s very hard to read the form,” said Lillian.
“Even my mum found it hard.” Others reported never being told their diagnosis or recommended check-ups.
Consent was often unclear – or skipped altogether.
Genetic counselling can raise difficult questions about identity and future health. For some, a diagnosis brought deep emotional distress.
“I feel like I’m not normal now,” said Katrina. “My friends and family don’t mean to be mean, but they act like, ‘You’re not all there now.’ ”
Several participants reported suicidal thoughts following their diagnosis.
The language used in genetics – words like “abnormality” and “mutation” – can reinforce stigma.
“I knew I wasn’t normal to others,” said Aaron. “I knew some part of my brain was missing.”
National bodies like the Disability Royal Commission have acknowledged the systemic neglect people with intellectual disability face in healthcare, contributing to poorer health outcomes and shorter life expectancy.
In response, NSW Health funded the GeneEQUAL Educational Toolkit, co-developed with self-advocates.
It promotes three key principles: making reasonable adjustments (like longer appointments), providing person-centred communication (such as Easy Read reports), and offering trauma-informed, strengths-based care.
The toolkit is gaining international attention – not just for its content, but for its inclusive co-design.
It’s a step toward a healthcare system where people with intellectual disability are treated not as “its”, but as individuals deserving of dignity and understanding.
*Names changed.
Extracts for this article sourced from theconversation.com.au. Authors: Elizabeth Emma Palmer, Iva Strnadová, Jackie Leach Scully, Julie Loblinzk, all from UNSW Sydney (October 2024)
