Medical Humanities and Anti-Ableist Healthcare By Ritika Tiwari

Healthcare proclaims to be 'for everyone', but this is not the reality for one billion people with disabilities. Disabilities present a range of obstacles ranging from access issues, paternalistic doctors and flawed research. Medical Humanities is an interdisciplinary field which works to 'make medicine more humane' by combining humanities and medicine. In medical practice Medical Humanities may 'challenge these obstructions' by taking disability studies seriously and 'addressing ableism in medicine'. This essay seeks to explore the role of ableism within medicine, the barriers which people with disabilities have to cope with, specific problems women with disabilities encounter and the impact Medical Humanities has on reforming medicine.

What are the medical humanities and why were they invented?

The concept of medical humanities arose in the second half of the twentieth century as it was believed that medicine was becoming too reliant on technology and was failing the individual. They sought to make doctors see illness not only as a biological problem but as a 'human phenomenon', and the medical humanities bring subjects from the arts, humanities, literature, philosophy and anthropology to medicine to try and influence practice and education. Rita Charon developed the concept of 'narrative medicine' at Colombia University with the belief that doctors should be trained to hear patients' narratives and see illness as 'a human experience', Arthur Frank discusses people with chronic illnesses' use of narratives to come to terms with life and discusses three types of narratives (restitution narrative, chaos narrative, quest narrative) used within Medical Humanities to talk about the experience of illness and disability, this idea has already gained scientific backing as a study in the Journal of General Internal Medicine found that narrative medicine training improved students' empathy and tolerance of uncertainty by providing more meaningful interactions with patients (Hirschfield et al., 2020).

The Medical Model: Limitations and Consequences 

To discuss the use of disability within the humanities we must first address the Medical Model of disability, which is viewed as the direct opposite of the Social Model. Disability under this model is viewed as an individual problem within a person's body which a doctor will have to either cure or manage. This model has proved to be problematic as it failed to include the role that the environment plays within disability; in 1975 disability activists stated that the causes of disability were located within societal attitudes, not within a person's body or mind. The medical model addresses participation and access for people with disabilities, and it is this that has led to the biggest changes for disabled people rather than medical intervention alone. A study published in The Lancet in 2019 confirmed this by finding that social participation, economic security and inclusion within the community were the strongest indicators of a high quality of life for people with disabilities rather than factors associated with the illness or the level of impairment (Vos et al., 2019), further, the WHO's 2011 World Report on Disability concluded that over 1 billion people are disabled and that social and environmental barriers within a persons life have the largest impact on health inequalities for disabled people.

A history of ableism within the Medical profession 

Medical ableism is historically tied with the eugenics movement, a movement that sought to improve human beings by means of selective breeding and the identification of those considered to be undesirable and who must be eradicated. The idea has been historically supported by many physicians and scientists, and has historically resulted in mandatory
sterilization laws, forced abortions and mass murder of people with disabilities. While this practice is now discredited, the ideologies associated with it still have a huge influence today and some view modern views on rehabilitation and normalization as simply 'neo-eugenics' and more recent debates on selective abortion for genetic conditions provide the clearest evidence of how such prejudice continues to impact medicine (Garland-Thomson, 2017); Longmore and Garland-Thomson document the ways that those involved with the Eugenics movement may not have entirely abandoned these ideas, and have transformed them into terms like normalization and rehabilitation. These atrocities include the 60,000 Americans forced into sterilization under laws upheld by the Supreme Court in Buck v. Bell (1927) which have never been repealed, and the 200,000 people with disabilities killed between 1939 and 1941 by physicians in Germany as part of the Aktion T4 program (Lombardo, 2008; Burleigh, 1994).

Contemporary Ableism within the Medical profession 

Modern doctors continue to practice with a system which marginalizes disabled people due to the underlying ableist prejudices within the medical profession, physicians regularly underestimate the quality of life enjoyed by disabled patients-a practice known as the disability paradox, and the study by Albrecht & Devlieger (1999) documented how most disabled people would claim their quality of life to be good or excellent and this was reflected by a large minority of non-disabled observers. A study published in the New England Journal of Medicine stated how many physicians held unconscious negative attitudes toward people with disabilities and these correlated with worse quality of care received by disabled patients (Iezzoni et al., 2021). Diagnostic overshadowing also means that patient's symptoms are automatically seen to be attributed to their disabilities and not investigated for what they actually are. A 2021 report by NHS England stated how this could be a factor in why people with learning disabilities are die at least 20 years earlier than the general population, due to their condition being missed (NHS England, 2021).

Structural, Attitudinal and Architectural Barriers 

Physical architectural and structural barriers along with health professionals’ attitudes inhibit the access of disabled people to health care facilities. Examples of such barriers include physical obstacles within medical settings, health professionals lacking adequate attitudes towards disabled people, and the system/institution procedures not being convenient for people with disabilities. Such barriers cannot be removed without the interdependence of other barriers: for example, buildings accessible to disabled people will not help if the health professional is a doctor who is not aware and/or does not know how to work with disabled people, or if attitudes are so negative that a disabled woman is not allowed to see her GP. People with disability are hindered at all levels. A study published in 2017 in the Disability and Health Journal tested a national sample of primary care practices across the US and found that fewer than half had height-adjustable examination tables, the majority did not have accessible weighing scales and most had consultation rooms that were too small to allow wheelchair access (Lagu et al., 2017). The UK NHS accessibility audits indicated similar flaws particularly regarding older GP premises, pointing out that physical inaccessibility is not an individual but a structural issue (Care Quality Commission, 2016).

A major problem disabled people face is the system, which has a lot of bureaucracy that has to be undergone when searching for aid. Such systems are rarely designed for disabled individuals. Disabled people are required to carry out many actions in order to obtain financial aid or services. Disabled people must fill out many forms and documents, perform several tasks which may pose very great difficulties, and failure at one single step leads to considerable financial loss. The average disabled person in the UK spends approximately £583 per month on extra expenses (disability charity Scope, 2019), which adds further difficulties to obtaining necessary health support as people with disabilities need health services more and they have less ability to afford additional expenses than others.

Disabled Women and Intersectional Inequality

Women with disabilities experience challenges in receiving necessary medical assistance. They are subjected to more medical intervention than women without disabilities, yet have shorter life expectancies, and this is not just a statistical fact but a severe health issue impacting millions of women globally. Data published by the Missing Billion Initiative revealed that disabled women receive inappropriate medical care at twice the rate of non-disabled women and that their life expectancies are 10–20 years shorter (The Missing Billion Initiative, 2023). Due to these barriers, women with disabilities are often deprived of any health screening such as breast cancer or their annual mammogram, usually due to equipment not fitting the woman, services not available, or staff not being trained on how to care for disabled individuals. The British Journal of Cancer reported similar findings in a study that investigated the percentage of women with physical disabilities up to date with their cervical screening tests (including adjusting for socioeconomic background). Such patients were less likely to have regular screening than their non-disabled counterparts (Ravindran et al., 2021). Problems related to women with disability’s reproduction and sexuality are also significant, with disabled women often considered "asexual", and not wanting to reproduce, which is an untrue and insulting misconception of their character. The study showed that when disabled women wished to receive help with fertility treatment, contraceptives or antenatal care, they faced much difficulty receiving support in such areas. According to a 2019 study on obstetrics and gynaecology, disabled women face much higher risks of poor perinatal results than non-disabled women and this is partly due to the inadequate antenatal care they receive (Mitra et al., 2019). The system does not recognize disabled individuals and doctors are not prepared to cater for their needs. Because of these facts, women with disabilities are often at a greater disadvantage compared to other women, and this is due to "ableism." Issues experienced by disabled women with disability’s' condition are then compounded by factors such as gender, LBGT status, socio-economic status and geographical origin (intersectional inequality) (Crenshaw, 1989; Dusenbery, 2018; Liverpool, 2022).

Moving Towards Anti-Ableist Medical Humanities

This issue can be resolved through the implementation of Medical Humanities. Medical humanities endeavours to question and improve current medical systems and institutions, and in doing so, it must take heed of what disabled people believe should happen, as they MUST be the ones leading Medical Humanities in medicine, because the health care system is not aware of the problems which individuals face, and without any involvement, there is no use trying to achieve any sort of reform. If disabled people were permitted to help with medical training and put in a position where they are respected as the experts of their bodies, disabled patients’ and individuals’ diseases, conditions, illnesses and disorders would be considered by health care providers. Supported by previous research (a systematic review published in 2020 in Academic Medicine indicated that disabled-people-inclusive disability education programes led to much more progress in attitudes of medical students to people with disabilities than pure teaching methods (Satchidanand et al., 2020), we must acknowledge the issue of post-colonialism in the field of medicine and disability, and attempt to incorporate modern Western medical practices into the Global South, which should consider disabled people's needs. The World Health Organisation suggested that 80% of the worlds' disabled people lived in low- and middle-income countries, and that the reasons for disability are linked to global structural inequalities such as lack of clean sanitation and existence of conflict (WHO, 2011).

The healthcare system is not there to serve people. It exists to serve non-disabled people, which is a problematic issue due to the high percentage of the population that is disabled. The medical humanities system is not in place to address the issues it faces; it must listen to what disabled people themselves have to say about these issues. The medical system needs to be more humanitarian and inclusive, it needs to recognize disabled people as experts of their own bodies, they must be treated with respect and consideration; Medical Humanities are able to facilitate this change if it's willing to listen to and take disabled people seriously. 

References

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Burleigh, M. (1994) Death and Deliverance: Euthanasia in Germany 1900-1945. Cambridge: Cambridge University Press.
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Crenshaw, K. (1989) 'Demarginalizing the intersection of race and sex', University of Chicago Legal Forum, 1989(1), pp. 139-167.

Dusenbery, M. (2018) Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. New York: HarperOne.

Garland-Thomson, R. (2017) Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. 20th anniversary edn. New York: Columbia University Press.

Hirschfield, L. et al. (2020) 'Narrative medicine training and empathy in medical education', Journal of General Internal Medicine, 35(3), pp. 926-931.

Iezzoni, L.I. et al. (2021) 'Physicians' perceptions of people with disability and their health care', New England Journal of Medicine, 384(12), pp. 1177-1179.

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Missing Billion Initiative (2023) Missing Billions: The Case for Better Healthcare for People with Disabilities. London: Missing Billion Initiative.

Mitra, M. et al. (2019) 'Adverse perinatal outcomes among women with disabilities', Obstetrics and Gynecology, 133(6), pp. 1139-1147. 

NHS England (2021) Learning from Deaths of People with a Learning Disability. London: NHS England.

Ravindran, S. et al. (2021) 'Cervical screening uptake among women with physical disabilities', British Journal of Cancer, 124(5), pp. 977-984. 

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