People with intellectual disability told us they often felt cut out of their own health appointments, as healthcare practitioners spoke to their support person or family instead of to them.
They don't treat you like a person. They treat you like an 'it'.
This was how Richard*, who has an intellectual disability, described his general experiences with medical professionals.
He was among 18 adults with intellectual disability and eight support people we spoke to for a study on how people with intellectual disability have experienced medical care. We were especially interested in experiences with genetic health care (where, for example, a person may get genetic testing to learn more about their disability).
This work, part of a broader body of research on intellectual disability and medical care, has revealed an urgent need to shift the deeply entrenched assumptions many health-care workers often hold about patients with intellectual disability.
Our research suggests health professionals need training to deliver more inclusive, person-centred and respectful health care.
Centring lived experience from the outset
This work demanded a different type of research.
Our team included not just genetics researchers, bioethicists and disability education researchers but also adjunct lecturer Julie Loblinzk OAM, a mother and self-advocate leader with intellectual disability (who is also a co-author on this article).
Together, we formed the inclusive research group GeneEQUAL.
We set out to involve people with lived experience of intellectual disability in the project design, implementation and interpretation.
We've now produced a number of studies revealing the startling extent to which people with intellectual disability are often excluded from discussions about their own health.
People with intellectual disability told us how they generally felt cut out of their own health-care appointments, as health-care practitioners often spoke to their support person or family member instead of to them.
Many spoke of how little effort health-care professionals often put in to use accessible language or offer easy-to-read materials. As Lillian told us:
It's very hard to read the form? Even my mum found it hard to read.
This meant people with intellectual disability were often unsure why they were having a genetic test at all.
Many felt excluded from decisions about consent for genetic tests, or even what was talked about in the appointment.
The video below shows an all-too-common experience for people with intellectual disability seeing a doctor for genetic testing.
The next video, by contrast, shows what accessible, inclusive and respectful practice would look like.
Post-diagnosis support is often lacking
Genetic counselling is often emotionally triggering. It touches on deeply personal issues of identity, health implications for children and extended family, and future health. For example, after a genetic diagnosis Katrina said:
I feel like I'm not normal now. And I've told people about it, and they're my friends and family and they don't mean to pick on me about it, but they look like, 'You're just a retard. You're not all there now'.
Three participants said they'd considered suicide after their diagnosis.
However, people with intellectual disability told us they were rarely connected with appropriate psychological supports after their diagnosis. There is also a shortage of these kinds of supports. One interviewee, Katarina, told us:
you've got to watch the way you present things to us, because we will just break down and cry and think it's other things […] we get very, like, broken-hearted about things. We dwell on it, we stew on it.
The deficit-based language of genetics is peppered with words such as mutation, risk, impairment and abnormality. This can reinforce people's lifelong experiences of bullying and stigma. As Aaron told us:
In my mind, Mum has said to me, 'You're missing a bad chromosome'. […] I knew I wasn't normal to others - I knew I was missing, some part of my brain has gone missing.
All of this means the potential benefits of a genetic diagnosis were often wasted.
Virtually none of the participants in our research knew the name or nature of their genetic condition, let alone what health checks or therapies were recommended.
Worse, their ongoing health-care teams (including their GPs) were often equally in the dark.
