14 April 2019
By Catia Malaquias
The interaction of the medical profession and people with disability has a troubled history. The medical profession was an active exponent of eugenics in the early 1900s which sowed the seeds for the forced euthanasia – murder – of hundreds of thousands of people with disability in Germany under the Nazi regime. Medical professionals then acted willingly, it would seem, as no order was ever made requiring their compliance. During the Nuremberg trials, the few of the German doctors that were prosecuted argued that they simply practiced eugenics – what medical professionals and public intellectuals in the Allied Countries had advocated for before the war.
Medical professionals were then – and still are today – among the most respected people in our communities.
With that respect, the medical profession has a disproportionate impact on how society sees disability – and people with disability.
There are too frequent stories in the media of people with disability, particularly intellectual disability, receiving poor or sub-standard medical treatment – or being denied treatment options that are offered to non disabled patients, sometimes with deadly consequences. The recent confronting story of Joe Ulleri, a 61 year old man with Down syndrome who died in a UK hospital and whose family claims that ‘catastrophic failures’ left him ‘starving’ in his hospital bed for 19 days, resonates of issues systemic to medical settings. Those systemic issues are not confined to the UK, but are also corroborated in Australian medical settings, as a landmark study by University of New South Wales Professor Julian Trollor has revealed.
A new campaign by disability organisations around Australia “Our Health Counts – End Deadly Disability Discrimination” seeks to highlight the issue of disability discrimination in health services for people with intellectual disability. Along with over 120 eminent health professionals, academics and community leaders, I am one of the signatories to an Open Letter to political parties contesting the upcoming Federal election, asking them to address the health inequalities experienced by people with intellectual disability.
The issues are complex, communication barriers can often play a significant role, but a cultural and therefore preventable aspect that undeniably has a key impact is ableism, in the medical profession itself.
While medical professionals are genuinely committed to the best outcomes for their patients, like most of people in society they are affected by ableism – that is, usually unconscious prejudice towards people with disability. However, a compounding factor at work in the medical context is the historic relationship of the medical profession to disability and the fact that it still remains heavily saddled by that history – and its legacy – the medical model of disability, that understands disability as being inherently a physical or mental deficiency of the individual, to be treated and remediated if medically justifiable.
Inherent in the medical model is the implicit devaluation of disabled bodies by reference to non-disabled bodies. The greater the degree of disability – particularly intellectual disability – the greater the devaluation and the greater the risk that a biased and prejudicial judgment will be made in relation to the quality of the patient’s life and their capacity to realise the benefit of medical treatment given that devaluation.
In essence, the medical model of disability is prone to seeing the patient as the relevant impairment or disability, rather than as an individual.
Medical ableism manifests itself in conscious – but more pervasively perhaps – in unconscious ableism.
When a medical professional assesses a patient through an ableist lens, they unconsciously adopt low expectations for, and prejudicial assumptions as to, the worth of the disabled patient – the treatment options are inevitably narrowed and the practical hurdles to their adoption increased. Those compromising effects of ableism are compounded where the medical treatment involves the consumption and prioritisation of scarce health system resources.
Further, a medical ableist response to disability not only causes downward bias as to quality and viability of treatment options, the medicalisation of disability and its propensity for medical professionals to default to (assume that) the relevant impairment must be the underlying cause of the patient’s complaint results in limitations in (including the absence of) proper diagnostic assessments. In essence, the risk of misdiagnosis is higher because of prejudicial clinical assumptions, in particular that the relevant complaint of the patient is most likely just a natural and inevitable progression or manifestation of their impairment or disability, rather than a pathologically separate and potentially treatable issue.
In addition, in the context of intellectual disability – the voice of the patient is largely unheard – and when heard, too frequently devalued, dismissed and overridden. Medical professionals – seeking some basis for “informed consent” – invariably look to the views of family members and carers – if any are available – in discussing treatment options. Those views of ‘associates’ are by their nature ‘secondary’, often under-informed, frequently themselves affected by ableism and lacking in independence, being from people that are usually trusting and willing to be guided by medical professionals.
Professor Julian Trollor’s landmark study drew some damning conclusions, including that people with intellectual disability die 27 years earlier than the general population and that 38 percent of deaths of people with intellectual disability are potentially avoidable. Many of these avoidable deaths are incorrectly attributed to an individual’s disability when they are in fact an outcome of systemic ableism and discrimination within health services.
Society has been moving progressively towards understanding and accepting the social model of disability that underlies the human rights approach to disability – that disability is the result of the interaction of a person’s impairment with their environments – that the limitations of the physical or mental impairment for the individual primarily arise from “barriers” – physical and attitudinal – present in their environments.
Many medical schools are becoming conscious of the impact of ableism in medicine and health settings – and are increasingly bringing the perspectives of people with disability into their lecture theatres – to challenge ingrained medical thinking on disability.
The recently announced Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability covers “all settings” – including medical and health settings. There is no doubt that there will be many individual cases of “neglect” of people with disability in medical and health settings put before the Royal Commission.
However, against the rising human rights framework of disability, there is increasingly an imperative for exploring the broader question:
Is ableism in the medical profession – in manifesting itself in more limited, substandard diagnosis and treatment relative to non-disabled patients – a form of systemic neglect of people with disability – particularly intellectual disability?
[Cover photo © Martin Brosy]