Over and over the last two weeks, the same words echoed. They didn’t listen to me. They didn’t see me. They didn’t think I was worth helping.
Disabled people, and those that love them, have told the latest hearing of the Disability Royal Commission about their experiences in the health system. Neglect, abuse, violence all featured, with medical people and systems often talked about, not as caring health professionals, but as callous and cruel.
The hearing opened with Commissioner Sackville, the Chair of the Disability Royal Commission, talking about the Convention on the Rights of Persons with Disabilities, which Australia signed up to in 2009, and in particular Article 25 which states that ‘persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.’
As the hearing continued, the gulf between our rights in this Article, and the reality for many people with intellectual disability was stark. People with intellectual disability die decades before their non-disabled peers, and over 400 people with intellectual disability die every year in ways that could have been prevented.
People with intellectual disability don’t get access to the same kinds of preventative screenings as non-disabled people, with a major study finding that people with intellectual disability are ‘eight times more likely to die from cancer in a 10-year period.’ People with intellectual disability have high rates of psychosocial disability, but don’t get access to treatment, and are twice as likely to be admitted to hospital.
The people giving evidence this week, opening up about the hardest parts of their lives, had clear ideas about what needs to change to make the health system work for them. The key issues that were raised during this hearing included access to health care, communication, diagnostic overshadowing, restraint, substitute and supported decision making, along with attitudes and discrimination from health practitioners and systems.
'Each story told over the last two weeks is a thread in a wider picture of a medical system that won’t change.'
Kylie Scott lives in a flat in Sydney, and is often consulted for her expertise about health care needs of people with intellectual disability, giving speeches and sitting on representative committees. She told the Disability Royal Commission how important communication from health practitioners is, such as asking short questions in plain English and being patient. She raised the importance of having ‘more psychologists for people with intellectual disability with mental health problems’ as well as people with disability knowing how to ‘find their voice and to be heard and, of course, live in the independent living as much as they can.’
Ruth Oslington gave part of her evidence in the form of a video, as did other witnesses. In the video, she spoke about being restrained, given medication against her will and subjected to multiple ECT treatments she didn’t consent to. She told the Senior Counsel, Kate Eastman, how important it is to be able to trust health practitioners. She said she needs ‘time, enough time understand complicated problems and talk to me, talk to other doctors, talk family, talk support workers if try — yes, talk when needing to say, yes, me, yes.’
Ms Oslington also spoke about what she thinks could help improve the system. ‘Education important, people — work people, mental health, medical know — yes. I think involuntary treatment problem too much, ECT against will shouldn’t — yes, yes. I think good place to live, right support to live out of hospital, people not go into hospital because need lots of support, not there.’
Erin Sheehy, and her mum Christine Regan, told the Commission about what Ms Sheehy liked to do, and about having a stroke at 25. Ms Sheehy then left the Commission hearing, because she didn’t want to hear the story about how she had been treated in hospital and beyond. Ms Regan described how hard she and her partner had had to fight to ensure that Ms Sheehy got access to the same kind of rehabilitation and therapy as any other stroke survivor would have received. When questioned, the doctor had said ‘Oh, look, she has Down syndrome. How hard are you going to try?’ Ms Regan said she ‘felt like she had been punched in the gut.’
Each story told over the last two weeks is a thread in a wider picture of a medical system that won’t change. Another witness, Professor Trollor, the UNSW Chair of Intellectual Disability Mental Health, told the hearing that these stories, these facts have been known for over 25 years.
The frustration of many giving evidence was palpable, as was the urgency. The Council on Intellectual Disability in NSW have campaigned for over 20 years for more attention to the health of people with intellectual disability. Their senior policy advocate, Jim Simpson, said ‘the fact that it has taken so long to get to that point, and the fact that there is so much more that needs to happen if we are going to address those preventable deaths, has been and continues to be a 'national disgrace'’.
For Aboriginal people with intellectual disability, the inequalities in the health system are multiplied. Dr Scott Avery, from First People’s Disability Network and Western Sydney University talked about how the language of intersectionality gave his community a vocabulary to describe something they knew all too well — ‘if you’re an Aboriginal person and you have experienced health inequalities, or a person with disability you experience health inequalities, if you bring those two things together, the inequalities that you experience are greater than either of those two larger groups if you traverse those two population groups.’
Narelle Reynolds told the Commission about the experiences of her sons, and their family, in trying to access the health care they needed. The family had experience homelessness and was trying to find support services through both the health system and the NDIS, but finding that difficult. Dr Avery’s research emphasised many of Ms Reynolds’ points — that disability isn’t separate from other parts of life, and that services for many Aboriginal people with disability are seriously deficient.
I wondered a great deal, listening to all these stories, about what it will take for the medical profession to think of us as whole humans with rights, and loves, and thoughts and wishes and hopes, instead of atomised bits and pieces they can apply their expertise to. I wondered how they can see our disabled selves as having value, when they are taught with every lesson only to see us as broken.
'The disability rights movement has long fought for a social model of disability to be at the heart of how we think about ourselves — what would a social model of health care look like?'
Saying the medical system runs on the medical model of disability seems self evident, and yet that’s at the heart of much of what has been talked about in these latest hearings. The medical model locates the ‘problem’ of disability firmly in the disabled person, and the expertise to fix that ‘problem’ within the health professional and health system. The disability rights movement has long fought for a social model of disability to be at the heart of how we think about ourselves — what would a social model of health care look like?
As the formidable advocate Robert Strike AM said to close the hearings, each time we go and seek health care, we carry the trauma of our previous experiences with us. Each occasion of harm leaves scars that can dictate how we navigate the systems that have little room for how we are. That history is important, as important as the history that medical people love to take.
Different disabled people continue to work with different parts of the medical system to try to get that system to understand that we matter. People with psychosocial disability urge change, people with chronic illness talk with medical students, people with intellectual disability meet with health ministers.
Each time, they say similar things. Listen to us. Honour the way we communicate and what we know. Slow down and take the time. Believe that we matter.
El Gibbs is a freelance writer specialising in the area of disability and social services and has over 15 years experience in the community and NFP sector, as well as politics. Find her on Twitter @bluntshovels.
Main image: A woman on a hospital bed covers her face (Getty images/ Manop Phimsit)