Changing the medical model of disability to the normalization model of disability: clarifying the past to create a new future direction

Abstract

The medical model of disability describes a widespread approach to disability common since the 1800s that views disabilities of all sorts as abnormalities that need to be cured or eradicated. Under the medical model of disability, medical care for disabled people has focused on making the bodies and brains of disabled people conform as closely as possible to society’s idea of a normal person. This emphasis on normalization was and continues to be extremely harmful to disabled people. In this paper, I propose retroactively changing the term medical model of disability to normalization model of disability to avoid conflation with useful medical care and to highlight normalization as the quintessential harm of the model.

Points of interest

• Disability models are mental maps that shape all aspects of life for disabled people.

• The medical model of disability has dominated societies for a long time.

• The medical model sees disabilities as abnormal and tries to make disabled people conform to our idea of a normal body or brain.

• Trying to make disabled people just like so-called normal people is very harmful and hurts disabled people.

• In this article, the author suggests we change the name of the medical model of disability to the normalization model of disability so that everyone understands clearly just how harmful normalization is.

• The author also suggests we change the name because disabled people might want medical care in some circumstances. Using the term ‘medical model’ can cause confusion because the medical model was and continues to be very bad, but not all medical care is bad.

Keywords:

• Medical model of disability
• social model of disability
• medical care
• normalization of disabled people
• disability justice

In the United States and Westernized areas of the world, the medical model of disability has dominated societies since the 1800s (Mackleprang and Salsgiver, 2009; Peterson and Aguiar 2004; Williams 2001). The fundamental assumption of the medical model is that the bodies and brains of disabled people are tragically abnormal and that disabled individuals are responsible for any consequences of their presumed or actual incapacity (Barnes 2018). At great detriment to disabled people, disability policies, laws, research, education, and medical care under the medical model have focused on normalizing bodies and brains of those deemed disabled, eradicating disability traits, and segregating the disabled from non-disabled people (Bunbury 2019; Shakespeare 2006).

Important strides have been made over the last few decades to move society away from the medical model (Oliver 2018). Adoption of a social model of disability that blames barriers and inequities in society for disabling human beings has improved conditions for disabled people in some ways (Barnes 2018; Barton 2018). A strong distinction has been made between disability, a state of inability perpetuated by social factors, and impairments, features of bodies and brains that can be positive, neutral, or negative regardless of the environment (Goering, 2015; Shakespeare 2006; Thomas 2010). Internationally, the United Nations has promoted the rights of disabled citizens to fully participate in their societies (United Nations General Assembly 2006; United Nations Human Rights Council, 2020). In the United States, laws since the 1970s such as the Americans with Disabilities Act (ADA) of 1990 and Education for All Handicapped Children Act of 1975 (later changed to the Individuals with Disabilities in Education Act) were passed to enforce social model accommodations and to facilitate inclusion in community life (Hogan 2019a).

However, the medical model attempt to normalize the bodies and brains of disabled people continues, stigmatizing human variance and sustaining disability oppression (Barton 2018). In fact, social model laws such as the ADA and IDEA, originally intended to remove oppressive barriers to participation, can inadvertently reinforce the medical model by requiring disabled people to document incapacity and abnormality to qualify for services and supports (Areheart 2008; Bunbury 2019). Accommodations are sometimes provided to disabled people only when economically convenient, not simply because a human being inherently deserves to be supported and included (Anders, 2020; Thomas 2019). Some disability theorists are calling for a stronger social model that would hold society accountable for accommodating and supporting disabled people simply because they are human beings, simultaneously widening the notion of socially produced barriers to include factors such as poverty, not just the lack of ramps to get into buildings (Berghs et al. 2019; Levitt 2017).

Another social model tension has emerged. Most disabled people and some non-disabled people are against medical procedures and protocols that attempt to normalize the bodies and brains of disabled people (Hogan 2019b). However, some disabled people want medical care, treatment, or even cures for body and brain conditions they identify as painful, challenging, or limiting (Clare 2017; Gibbons 2017; Patsavas 2014). Reducing disease, impairment, and disability resulting from environmental destruction can be an important aspect of environmental, racial, and socioeconomic justice (Pellow 2016; Pulido 2016; Turner 2016). Non-Western societies have noted that people experiencing multiple axes of oppression may want medical care for disabilities caused by colonialism, war, racism, and poverty (Meekosha 2011; Meekosha and Soldatic 2011; Soldatic and Grech 2014). Even while acknowledging that experiences of impairment are social and not just biological phenomena, with ableism playing a role in the desire for society’s notion of a normal brain or body, disability scholar Paul Abberley notes that denying treatments or cures can be construed as a form of oppression in and of itself (1987). In this essay, I will explore medical care and disability in greater detail and suggest that changing the name ‘medical model of disability’ to the ‘normalization model of disability’ could assist in highlighting normalization, not medical care per se, as the problematic oppression we need to resist.

A brief overview of disability models

Disability models guide our reactions to body and brain differences and serve as maps that inform how disabled and non-disabled people interact with one another in society, with significant consequences for both groups (Bogart et al. 2022). Models of disability powerfully impact all aspects of life including treatment and legal status of disabled people; access to educational and employment opportunities; and representation of disability in media and popular imagination (Altman 2001; Durham and Ramcharan 2018; Smart 2009). The dominant model of disability also impacts a disabled person’s self-concept and powerfully reinforces or refutes stigma (Smart 2004).

Origins of the term medical model

The term ‘medical model of disability’ was coined by a psychiatrist, Dr. Szasz, in the mid-1950s to critique the emerging psychiatric practice of defining mental conditions as illnesses and treating these new ‘diseases’ with medications (Hogan 2019a). People with mental health conditions had long been considered deviant and abnormal (Lemert 1951; Parsons 1951). Szasz accused psychiatrists of pathologizing natural human emotions and behaviors and inventing diseases of the mind only as a means of enforcing social order (1956, 1960). While Szasz acknowledged that some individuals had what he called problems of living, he felt that dispensing pills did nothing to end stigma, poverty, and injustice or to foment the changes in social conditions, cultural attitudes, and relationship expectations that psychiatric patients would need to integrate into society successfully (1960, p. 114; Albee 1977; Goffman 1961).

Szasz was pilloried for speaking out against the medical model of disability in psychiatry (Weinstein 1994). Despite this derision, use of his term spread and was applied well beyond psychiatry. By the 1970s, medical model of disability had become lingua franca for pathologization of brain and body conditions (Begelman 1971; Hogan 2019a; Williams 2001). For example, people with physical disabilities started referring to their medical treatments as part of the medical model of disability because the typical goal of these treatments was normalization of their torsos and limbs (Zola 1983). Disability activists began rejecting the authority of doctors; declining treatments and surgeries; and embracing their physical variances and traits as beautiful (Frank 1986).

Residential support programs for developmentally disabled individuals were accused of following the medical model of disability too because healthy residents in these programs who were fully capable of learning, growing, and living in society were viewed as sick, incapable and childishly dependent on staff (Roos 1971; Wolfensberger 1969). Schools were criticized for following the medical model of disability by labeling and segregating disabled children instead of adjusting teaching methods and altering classroom structures (Holzberg 1975; Kavale and Hirshoren 1977; Reger 1972). Even churches were admonished to stop using the medical model of disability by anointing the disabled with oil intended for the infirm and frail because doing so was psychologically harmful and amounted to ‘…non-acceptance of the diversity of God’s creation…’ (Kennedy 1982, p. 17).

Features of the medical model of disability

How the medical model was established is a matter of debate. Some have suggested that capitalism fomented the medical model as disabled workers who could not labor successfully in industrial workspaces came to be viewed as incompetent burdens (Finkelstein 1980; Oliver 1989). Others have suggested that disability oppression is far older than industrialization and that the medical model simply has codified into policy longstanding fears regarding health, mortality, happiness, freedom, and beauty sparked by the presence of disabled people and their incongruous minds and bodies (Peters 2018; Peterson and Aguiar 2004; Shakespeare 1994). Still others have hypothesized that the medical model is a modern update of the prior moral model of disability – instead of blaming disability on sin, disability is blamed on a person’s laziness, with authority over disabled lives moving from priests to doctors (Mackelprang and Salsgiver 2009; Smart 2004; Szasz 1956). Probably many factors have contributed to the entrenchment of the medical model of disability over time (Abberley 1987; Barnes 2018).

Despite no firm start date or cause for the medical model of disability, consensus has grown regarding the fundamental features of the model. For example, scholars generally agree that a core aim of the medical model since at least the 1800s has been to sort people into abnormal and normal categories, with abnormal status denying access to societal resources, curtailing life opportunities, and stripping the individual of power and agency (Baynton 2013; Barton 2018; Drake 2018; Riddell 2018). Large-scale institutionalization of the disabled in decrepit and abusive facilities acted to remove the disabled from society and to reinforce their abnormality (Blatt and Kaplan 1966; Rivera 1972). Regard for disabled lives was so weak that institutionalized children were once fed radioactive oatmeal in a non-consensual medical experiment (Reimann 2017).

The medical model continues with segregation of the disabled in special programs, classrooms, and facilities designed to sequester them; denial of educational and employment options; and a vigorous deficits-based diagnostic and therapeutic industry – all cultural activities that continue ascription of abnormal status to those deemed disabled (Andrews 2020; Braddock and Parish 2001; Hayes and Hannold 2007). Abnormality is viewed as an inferior state best avoided at all costs (Peters 2018). Training disabled people to move, speak, think, behave, and interact in ways deemed normal became the urgent goal of therapy, rehabilitation, and medical care (Hayes and Hannold 2007; Safilios-Rothschild 1970). Normalization in therapeutic and health care settings continues despite negative consequences for a disabled person’s self-esteem and mental health (Kirkham 2017). Disability terminology still largely reflects medical model values, with disabled people referred to as afflicted or suffering, though they are often not ill (Slee 2018; Walker 2012).

Because those with abnormal status were framed as burdens on society, their lives have been deemed expendable, entwining eugenics and the medical model. Eugenic responses to disability would be difficult to promote or sustain without the medical model framing of disabled lives as abnormal, pitiable, and not worth living. For example, the medical model is frequently blamed for both the Nazi genocide of disabled people during the Holocaust and the forced sterilization of the disabled in the United States that continued into the 1970s, eugenic atrocities that were carried out by licensed and lauded medical professionals (Czech 2018; Hubbard 2013; Klein 2012; Mitchell and Snyder 2003; Stubblefield 2007). The Supreme Court of the United States upheld the legality of forced sterilization of disabled people in 1927, a decision that has never been challenged or overturned (Buck v. Bell).

Eugenics of the disabled continues via prenatal screening and selective abortion (Bryant and Shakespeare 2022; Wilson 2022). Many pro-choice disability activists claim the problem is not reproductive agency but the devaluation of disabled lives; the lack of accurate, unbiased information about disability; and systemic gaps in available support, all of which influence reproductive decision-making (Asch 1994; Hubbard 2013; Saxton 2013). Mercy killings of the disabled sustain the premise that being disabled is a fate worse than dying, with little analysis of the societal conditions – including bias and lack of support – that can make living with a disability difficult (Longmore 1987; Reinders, Stainton, and Parmenter 2019).

In summary, the assignment of some people to an abnormal and inferior category bolstered and sustained the disenfranchisement and marginalization of disabled people over time (Dahrendorf 1969; Gramsci 1947/1971). The medical model assumption of abnormality and inferiority was and continues to be so entrenched that to many people, the ascribed abnormality of disabled people seems intrinsic (Barton 2018). However, critiquing the medical model as a problem of unequal power provided a novel means for disability to be addressed as a political issue (Goffman 1961; Lukes 1974). For example, non-disabled people punishing disabled people for non-compliance; setting the agendas of disability agencies and organizations; applying resources according to non-disabled priorities; and generating and maintaining viewpoints on disability aligned with non-disabled concerns by dissemination of these views in mass media were now identified as oppressive acts sustained by a power imbalance (Drake 2018). If the problems of disabled people resulted from oppressive social arrangements, then oppressive conditions could be changed (Bunbury 2019; Oliver 1990).

The rise of the social model of disability

Paralleling the civil rights movements of other groups during the latter half of the 1900s, disabled people sought to upend disability injustice by dismantling the medical model of disability (Pelka 2012; Shapiro 1993). Society had rarely been held responsible to change; people had never tried widely to destabilize outmoded notions of normalcy; society had never concertedly attempted to provide new roles for divergent members (Zola 1975). Increasingly, blame was placed on societal conditions and notions that can thwart a disabled person’s ability to function more than possessing unique body and brain traits (Marks 1997; Zola 1983).

Members of the London-based Union of the Physically Impaired Against Segregation drafted a document in 1975 that blamed society for causing disability by erecting barriers to participation (UPIAS, 1975). Soon after, Mike Oliver, a disabled sociology professor, coined the term social model of disability to convey this new idea that inability arises from social conditions, not from having a variant body or brain (1983). The social model assumes incapacity is inflicted on people by inaccessible and socially hostile environments and by powerful non-disabled people who maintain oppressive conditions (Barnes 2018). The concept of the social model of disability spread to the United States and then eventually began changing societies around the world (Hogan 2019a).

Social constructivism: the foundational assumption of the social model of disability

The core assumption of the social model of disability is that disability is a constructed concept, not an embodied personal flaw (Barnes 1990; Oliver 1990; Shakespeare 2013). Logically, if disability was an inherent inability, we could create a menu of disabling conditions and corresponding consequences applicable in any society. Distinct cultural groups reinforce and uphold unique understandings of disability through interpersonal interactions and socialization (Berger and Luckmann 1966). Anthropological accounts document a wide range of understandings and definitions of disability across the globe, including positive statuses or special responsibilities for those with variant traits in some societies, strengthening the argument that disability is culturally produced (Fuentes et al. 2010; Ginsburg and Rapp 2013; Hanks and Hanks 1948; Kirmayer 2006; McDermott and Herve 1995; Reid-Cunningham 2009).

The construction of disability occurs in two directions. Firstly, features of a society can manufacture inability. If a society expects young adults to form and run their own households solely, someone needing daily life support is likely to be viewed as inept and a burden; yet in a society where many intergenerational members of a family remain together across the lifespan, providing one another support and care, the same person may blend seamlessly into the household (Barnes 2018). If workers are expected to energetically labor for many hours with few breaks under strenuous conditions, individuals with body and brain differences may not be able to participate, leaving them vulnerable to poverty and reinforcing the notion that they are unemployable; yet, if the same individuals can access slower-paced or less physically rigorous economic opportunities, they may participate with ease (Barnes 1992; Wendell 1996). In a country with universal healthcare and a robust welfare system, a disabled person may experience few or almost no frustrations related to being disabled; however, in a country lacking either or both, the same disabled person may inadvertently blame the limitations of their bodies and brains for their difficult life circumstances (Albrecht 2002).

Secondly, historical events can produce disabled bodies and brains. For example, advanced medical care allows many soldiers to survive horrific injuries that were previously fatal but that leave them disabled (Andrews 2020). Colonizing activities such as war, genocide and environmental destruction in Global South areas of the world have resulted in high rates of disability and disease (Meekosha 2011; Meekosha and Soldatic 2011; Soldatic and Grech 2014). Lead in water has poisoned thousands of mostly Black children in Flint, Michigan, increasing the risk of neurological damage (Pulido 2016; Turner 2016). In other words, people can be disabled by interconnected experiences of colonialism, racism, violence, environmental injustice, and other harmful and oppressive acts.

Main features of the social model of disability

If disability is produced by the conditions, assumptions, and events of a society, then disability can be deconstructed (Wendell 1989). The disability movement has been, in essence, a suite of social model activities (Oliver 2004). In addition to demanding accommodations and access and pushing for legislation to protect the rights of the disabled, disabled people hastened the switch to a social model by conveying through cultural projects that living a disabled life is not a horrible fate and that being disabled does not rob a person of freedom and happiness (Albrecht and Devlieger 1999; Barnes 2018; Charlton 2000; Hahn 1988). They shared their perspectives and experiences through art and took pride in their unique brains and bodies (Brown 2003; Linton, von Tippelskirch, and (Producers & Directors) 2014; Sutherland 1989). They launched the Independent Living Movement and opened mutual aid centers across the country (Crewe and Zola 2001; McDonald and Oxford 1995). Though these and other endeavors are in essence social model-inspired activities, sometimes these efforts are collectively referred to as the cultural model of disability because the goal is to change cultural beliefs (Conyers 2003; Devlieger 2005).

In addition to demanding legal changes and engaging in cultural pursuits to alter societal conditions, disability activists engaged in political action to end discrimination, perhaps the steepest barrier to participation (Drake 2018; Pelka 2012; Shakespeare 2013; Williams 2001).

Laws were passed obligating society to provide accommodations, but biased attitudes toward disabled people persisted, with disabled people still often viewed as inherently burdensome by dint of their ascribed abnormality and as unworthy of full access and opportunity by dint of their humanity. Despite differences among disabled people, the disabled community has come to understand itself to be a distinct identity group that can unite both to fight for rights and to counter bias that hinders bestowal of rights (Hahn 1985). The social model is occasionally referred to as the minority model of disability or the socio-political model of disability for this reason (Hahn 1988; Smart 2009).

Some argue that society has no inherent responsibility to make life less unfair or to inconvenience one group of people to assist another group (Cox-White and Boxall 2008). However, the assignment to abnormal and normal statuses through cultural processes has had dire consequences. In understanding disability as a constructed phenomenon, the social model of disability assumes that those of us concerned about social justice have an ethical and moral responsibility to question and disrupt the purposeful disenfranchisement, discrimination, and disabling of a distinct group of people (Barton 2018; Berghs et al. 2019; Marks 1997).

Limitations of the social model

Despite enthusiasm for the social model of disability, cracks in the idealist hope for a completely accessible society full of variant human beings with equal opportunities grew by the 1990s. Although several social model limitations have been raised and explored in disability scholarship, I focus only on the conundrum of medical care for disabled people in this paper. The social model’s original disruption of the inhumanity of the medical model unearthed a seemingly intractable problem: While most disabled people have spoken out against medical care that seeks to normalize variant bodies and brains, some disabled people want, need, and can benefit from medical treatments in certain situations (Shakespeare and Watson 2002). Not all the challenges a disabled person faces are due to social conditions (Shakespeare and Watson 2002; Shakespeare 2013). The role of healthcare, treatments, and cures in the lives of disabled people has become a contentious issue (Anders 2013; Gabel and Peters 2004; Oliver 2013, 2018).

The role of medical care

The desire for a body or brain free of pain, free of difference from societal ideals, and free of challenge is influenced by socialization, ableism, and enforcement of cultural norms (Abberley 1987). Notions of independence, intelligence, freedom, and worthiness impact both disabled and non-disabled responses to brain and body differences and the resulting consequences (Goble 2014; Thomas 2014). Disability and impairment are biological and social phenomena (Anastasiou and Kauffman 2013; Barnes 2012). The mix of biological and social factors impacting the experiences of disabled people are often difficult to completely untangle. What is important to wrestle with is the role of health care and medical procedures in the lives of disabled people. Historically, as I explained earlier in this essay, medical care, therapy, and treatments almost exclusively aimed to normalize the bodies and brains of disabled people, an oppressive and systematic response that led to morally abject treatment and a cascade of horrific realities for those deemed disabled. However, being disabled can cause real problems or distress for a person (Altman 2001; Boström and Ahlström 2004; Bury 1997; Williams 2001). In the 1990s, feminist scholars felt that the disability movement often overlooked the suffering of those with degenerative and painful conditions (Charmaz 1991; Crow 1996; Morris 1991; Wendell 1996). Disabled people continue to vary in their understandings of their physical and mental experiences, sometimes decrying the obstacles they face or their need to rely on others for assistance, even while acknowledging that these understandings are socially produced (Clare 2017; Hopwood and Schwaba 2018; Johnson and McRuer 2014; Simmons, Blackmore, and Bayliss 2008).

Furthermore, Global South scholars have noted that sometimes, in Global South countries, a physically fit body can be crucial for economic survival (Grech 2009). Supporting a disabled family member, financing accommodations, and embracing disability as a difference may be lofty or irrelevant goals when coping with systemic poverty (Grech 2015). Activities of colonization such as war, genocide, dumping of toxic pollution, and industrialization without regulation in Global South areas of the world has resulted in high rates of disability and disease in these countries (Connell 2011; Meekosha 2011). Positioning disability as a medical problem may be the only way for individuals and communities in the Global South to demand and receive justice, compensation, and reparation for the damaging impacts of colonization and imperialism (Meekosha and Soldatic 2011; Salmon 2007; Soldatic and Grech 2014).

While being vigilant to avoid ableist frameworks that suggest being disabled is an inferior state of being or a terrible fate, access to medical care and therapeutic supports may also be an aspect of environmental justice. For example, thousands of mostly Black and other non-white residents of Flint, Michigan were poisoned by toxic water when officials deliberately chose to prioritize profit over human life, specifically mostly non-white lives – directly entwining racism, capitalism, and environmental neglect (Pulido 2016; Turner 2016). Residents of the area are now left to cope with the long-term impacts of rashes, infections, and other significant health problems; in particular, children exposed to lead in the toxic water are vulnerable to life-long neurological damage, with 50% of Flint households reporting behavioral health concerns and requesting behavioral health support as a result of lead exposure (DeWitt 2017; Pauli 2020).

As Critical Environmental Studies scholar David Pellow notes, healing of bodies violently harmed by the globally entrenched racist, capitalist system is ‘…indispensable to building socially and environmentally just and resilient futures…’ precisely because healing in this context becomes an act of radically valuing and prioritizing Black, brown, and indigenous lives (2016, p. 224). Disability scholar Eli Clare raises the question of medical care for disabled bodies and brains eloquently, asking us how can we ‘…embrace the bodies disabled through environmental destruction…war, genocide, abysmal working conditions, hunger [and] poverty…rather than deeming them abnormal bodies to isolate, fear, hate, and dispose of…’ while simultaneously providing ‘…cure and restoration…[as one]…response among many?’ (2017, p. 255).

I carefully suggest that there may be times and circumstances when provision of medical care, healthcare, and therapeutic modalities to people with variant body and brain traits can be desired and chosen by disabled people for a variety of reasons; that this medical care can even be a form of justice; and that this does not at all lessen the importance of a strong social model of disability. However, disability scholars and activists seem to have not yet discovered a means for resolving what I will refer to as the medical care conundrum. Disability scholars and activists have tried to deal with the conundrum in three main ways: One, they have tried to fold self-determined, non-normalizing medical care back into the social model by applying social model values to body and brain challenges. Two, they have tried to create hybrid models that combine elements of both the social and medical models. Three, they have proposed new models of disability. These approaches have not succeeded in reducing tension around medical care for disabled people. In the next several sections of this paper, I more fully explore the limitations of these approaches and make the case that the term ‘medical model’ exacerbates confusion and needs to be changed. Switching to normalization model of disability would allow us to acknowledge medical care as useful in some circumstances while providing an accurate term for conveying the abuses and oppression of normalization and a means to fully reject normalization of bodies and brains.

The first approach: application of social model values

Some scholars and activists have worried that discussing negative aspects of disability might derail political action pushing for an inclusive society (Oliver 2013). So as not to lose the social model of disability entirely, social model values have been applied to a fuller range of disability experiences in an attempt to bridge together political action to remove disabling barriers and discussion of pain (Morris 1991; Wendell 1996). For example, Listening to the perspectives of disabled people is one social model value that has been championed and applied to all disabled voices, regardless of individual experiences of disability or impairment. I discuss the application of this and other social model values to embodiment of disability below.

Applying social model values

Listening to the perspectives of disabled people, a core tenet of the social model of disability, provides a net of sorts to capture complicated disability experiences. When disabled people share their experiences – even painful ones – new knowledges about being human are generated and society is pushed to reconsider what is required for a good life (Garland-Thomson 2005; Sprague and Hayes 2000). ‘Difficult’ disabled lives provoke us to remedy gaps in care systems and to advocate for telework options, virtual appointments, seats at shopping centers, and a host of other features and social structures that usually make life easier for everyone (Johnson and McRuer 2014). In summary, we become wiser by witnessing the full range of human experience and even painful, tired, frustrating bodies and brains spark new social model features.

The social model also rejects the medical model assumption that some lives are not worth living. The social model values of Respecting all human lives regardless of personal traits and Seeing life as worthy of living regardless of limitations can be applied to cases of even significant debility. An ‘ill life’ – one replete with pain and suffering – has been reconceptualized as one worthy of living in its own right (Goering, 2015). Those with seriously constraining conditions have protested pity as too narrow a response to their situations (Patsavas 2014). Harriet McBryde, a lawyer and disability activist who needed full-time attendant care for all activities of daily life, relished the company of her assistants and decried how lonely non-disabled people must feel bathing or eating all by themselves, directly challenging pity as an appropriate response to her dependency (2005). Pain and incapacity can be decoupled from sorrow (Albrecht and Devlieger 1999; Gabbard 2010).

Applying social model values to all disabled lives, even those lives that hurt or that require extensive amounts of support and medical care, has emancipatory potential worthy of continued exploration. However, we are still left with confusion regarding the appropriateness and nature of provision of medical care to disabled people. Applying social model values to painful impairments and challenges resulting from unique body and brain traits, an important activity in and of itself, is an insufficient way to resolve the confusion.

The second approach: merging the medical and social models

Some disability scholars and activists have tried to blend the social and medical models to resolve the medical care conundrum. In the mid-1970s, George Engel, a medical doctor who studied the emotional and social aspects of being sick, proposed the biopsychosocial model of disability to combine the social model and the medical model (1977, 1981). The biopsychosocial model calls on professionals and society at large to consider the disabling impacts of social conditions while still viewing mental and physical disabilities as medical conditions that can sometimes respond to treatment (Ibid; Grinker 1994). The World Health Organization incorporated the biopsychosocial model of disability into the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) in 1980, later revised and renamed the International Classification of Impairments, Disabilities, and Handicaps (ICF) in 2001. The ICF considers the interplay of body and brain features, personal factors, and social and environmental challenges such as unequal access to education to describe and determine a disabled person’s level of functioning (Andrews 2020; WHO, 1980, 2001).

The problem with the biopsychosocial model and related models such as the capacity model is that no method exists for determining all the factors impacting a disabled person, nor is there a way to measure which factors are more important at any given moment (Benning 2015; Bickenbach 2014; Mitra 2006). For example, when a wheelchair user encounters difficulty getting onto a bus, is the problem due to external factors such as poorly designed busses, the derision of non-disabled bus riders who stare and act inconvenienced, or lack of funding for adequate public transportation? Or is the problem due to internal factors in the wheelchair user, such as the inability to walk in the first place? How do we assess which aspect of this scenario should be prioritized to improve the wheelchair user’s life?

When engaging with helping professionals, the biopsychosocial model frequently reassigns responsibility for change to the disabled person (Shakespeare, Watson, and Alghaib 2017). If we truly emphasized external factors of oppression, physicians and clinicians would need to become political activists against ableism and diagnostic tests would need to measure ineffective busses and the derision of the other riders instead of measuring incapacitated muscles or frustration tolerance in the disabled person (Nassir Ghaemi 2010). Most doctors are not strict adherents to a medical model of disability, yet it is extremely difficult to mandate clinician sensitivity toward injustice; as well, professionals and healthcare systems continue to focus on providing medical care to ameliorate alleged abnormality (Benning 2015; Nassir Ghaemi 2010; Hogan 2019b). The biopsychosocial model’s attempt to bring the social and medical models under one roof leaves too many rain holes. The medical care conundrum is not resolved, leaving no framework to clarify disability policy or set priorities.

The third approach: proposing new models

Several new models of disability have been proposed to sidestep altogether the social model/medical model binary. An exhaustive overview of every single new model of disability that has been named, proposed, and described in the literature would fill volumes. Here, I highlight a few that have received wide attention or that raise special concerns. Ultimately, no alternative models have yet succeeded in seamlessly integrating beneficial or just medical care into a model of disability.

Welfare/well-being model

The welfare model or well-being model is in essence a harm reduction paradigm (Kahane and Savulescu 2012; Savulescu and Kahane 2011). Under this model, the medical model’s emphasis on normalization is rejected as ableist and unsustainable in light of human diversity, while the social model’s focus on correcting injustices and inequities is rejected as too relativistic: What may be unjust in one society may be an irrelevant concern in another (Roache and Savulescu 2018). Instead, whatever actions improve the well-being of a disabled person are permissible. For example, doctors could dispense medication to alleviate anxiety, whether the anxiety is caused by a brain condition or by an unjust world (Savulescu and Kahane 2011; Roache and Savulescu 2018). The problem with the welfare/well-being model is that some contentious actions such as chemical castration of disabled children so they do not become adult size, easing the burden on their caregivers, would be allowed in the name of reducing struggle (Savulescu and Kahane 2011). Who will arbitrate what constitutes increased well-being or reduced harm?

Human rights model

The United Nations has pushed a human rights model of disability for several decades. This model assumes that by being persons, disabled people are entitled to participate in their societies and to be protected from discrimination and abuse (United Nations General Assembly 2006). This model avoids defining what is normal or abnormal and also does not judge societies and their structures and activities per se, avoiding both the medical and social models – disabled people are simply promised full inclusion in whatever society they find themselves living in by the fact of their humanity (Degener 2017). The problem with a human rights model of disability is that disabled people are often not regarded as human beings (Bérubé 2009; Koch 2005). The human rights model may also inadvertently reinforce the stereotype that disabled people do not truly contribute to society and are granted rights out of pity (Waldschmidt and Sépulchre 2019). Lastly, Global South disability activists have pointed out that the right of a disabled person to participate in society often loses meaning in the shadow of larger problems like food insecurity and war (Meekosha 2011; Meekosha and Soldatic 2011; Soldatic and Grech 2014).

Universal model

A universal model of disability also avoids both the medical and social models of disability by positioning disability as a neutral facet of human life: Everyone has a limitation of some sort or will acquire one simply by being alive (Andrews 2020; Garland-Thomson 2012; Zola 1989). Thus, the medical model notion that impairments are abnormal is refuted. Under this model, societies use principles of Universal Design to maximize accessibility for everyone, included disabled people (Story, Mueller, and Mace 1998). In a sense, the universal model parallels the social model, but designing for universal access is not equivalent to providing specialized accommodations (McGill et al. 2020). In fact, designing for universality may decenter disability from accessibility and may reprioritize the need for a certain kind of body or brain (Gibson 2014; Hamraie 2016). Using a universal model of disability may motivate societies to design accessibility features, but this does not necessarily ensure that disabled people will participate in design decisions or that disability bias will be reduced (Imrie 2012; Jones 2014).

Additionally, anticipating and planning for body and brain differences does not necessarily make those individuals who have them feel better about the challenges they face (Anders 2013).

Dialectical model

Instead of focusing on social barriers or body and brain deficits, the dialectical model of disability locates a disabled person’s problems as resulting from ever-shifting interactions (Bøttcher and Dammeyer 2012). Even in a world free of ableism, a person with impairments will still be impacted by social moments, the quality of relationships, and the context of interpersonal exchanges. For example, a student who uses an electronic device to communicate – a social model accommodation – still must contend with the speed and nature of academic lessons that may make using a device difficult; the teacher’s possibly low expectations or frustration that thwart the disabled student’s attempts to participate; and the potential derision of peers that can make using the device emotionally fraught; however, this same student may communicate with fluency at home even without a device because the student shares meaningful and mutually rewarding rapport with family members (Bøttcher and Dammeyer 2012). In other words, relationships change how a person’s disability is experienced in the world. Though the dialectical model of disability demonstrates how the medical and social models do not fully explain disability experiences, the model does not resolve the medical care conundrum.

Affirmative model

The affirmative model of disability seeks to embrace disabling conditions as simply another dimension of human experience. Under this model, the dominant narrative that disability is horrible and that it would be better to die than to live as disabled is challenged, a clear refutation of core medical model beliefs (Cameron 2014; Swain and French 2000). The affirmative model focuses less on traditional social model reduction of barriers in society and focuses more on changing perceptions of disability (Swain and French 2000). While the model does not deny difficult aspects of being disabled, distress is not considered the only aspect of disability experience and in fact, being disabled can have distinct advantages, including the freedom to not conform to societal expectations and roles that arguably may not be good for anyone (Shakespeare 1996; Swain and French 2000).

However, how we might implement an affirmation model of disability has only been loosely articulated (Cameron 2014, 2015). Oliver, the sociologist who coined the term ‘social model’ of disability, calls on us to ‘…celebrate not cure…’ body and brain differences and refers to the affirmation model as the ‘empowerment model’ of disability (2018, para. 55; para. 61). But what are the features of an affirmation/empowerment model? How would this model take hold and operate? It seems impossible to ‘enforce’ a positive understanding of disability, especially if a person is in pain or can no longer participate in activities they deem meaningful.

Summary of alternative models

I have not included an exhaustive critique of all the models of disability that have been proposed as alternatives to the medical and social models in an attempt to resolve the medical care conundrum. However, in sharing several major ones, I have tried to demonstrate that no alternative model that I am aware of has so far succeeded in incorporating the full range of disability experience – from those disabled people who celebrate their differences and want full access to society to those who want a cure for conditions and limitations that have been inflicted on them through racist and violent colonialism and environmental injustice and to those who seek alleviation of pain and challenges arising from body and brain traits. Disability scholars admit that all the various models are too confusing and distract from the work of bettering the world for disabled people (Oliver 2004).

A new approach: changing the name of the medical model

We have tried to incorporate valuable medical care under a social model of disability umbrella by expanding social model values to apply to all impairments, but at least some confusion regarding the role of medical care persists. We have tried to create hybrid models such as the biopsychosocial model which championed medical care and even cures while simultaneously seeking equity in society, but results were muddled. We tried to create new models of disability circumventing the medical and social models altogether, but none of these has so far worked to dispel confusion around disability and medical treatment. Therefore, I propose a fourth alternative – changing the name of the medical model of disability to the normalization model of disability. This would help conceptually highlight that historically, the model of disability that dominated society sought to oppressively normalize bodies and brains; that this normalization is what harmed and continues to harm disabled people; and that this normalization is what our efforts should focus on halting.

Advantages of changing to ‘normalization model’

Firstly, switching to normalization model puts the main problem right into the title of the disability model. I am not the first to suggest changing the name of the medical model of disability. Some scholars have tried calling the medical model of disability the individual model or personal tragedy model instead to emphasize the model’s location of challenge in individual body and brain features and the model’s insistence that disabled people bear sole responsibility to comply with society’s standards of normality to count as worthy (Finkelstein 1980; Oliver 1983, 2004, 2013; Swain and French 2000). Yet these alternative names for the medical model have not been applied widely. As well, calling the medical model either the individual model or the personal tragedy model still fails to highlight normalization as the crux of the problem.

Next, switching to the normalization model will hold all of society responsible for eliminating the harmful normalization paradigm. When we lump a variety of normalization protocols and efforts into the medical model of disability, the implication – intended or not – is that normalization was and is inflicted upon disabled people only by doctors and healthcare professionals, but normalization was and is inflicted upon disabled people across society. Non-disabled people attempt to normalize disabled people in all aspects of family and community life, in classrooms, courtrooms, grocery stores, street corners, playgrounds, and even in our own homes (Bunbury 2019; Nario-Redmond et al. 2019; Riddell 2018). When the whole purpose of education, medical care, parenting, community life, and employment is to uphold and enforce notions of normalcy, each of us is absolved of the responsibility to be accommodating, to remove barriers, to rearrange understandings of disability and human difference, and to question culturally produced notions of what is normal (Slee 2018). If we switch to normalization model of disability, we signal that normalization was and continues to be inflicted on disabled people not solely by the medical profession. Switching to normalization model immediately emphasizes the injustice of the abnormal/normal binary and requires not just doctors and therapists to be accountable for the trauma of normalization.

As well, changing to normalization model of disability might actually strengthen the social model of disability. Medical care chosen by disabled people for various reasons explored earlier in this essay could be seen as a health accommodation that promotes full inclusion, fights oppression, values lives, and honors self-determination. Contrasting a normalization model of disability with a social model of disability would provide a sharp conceptual tool to, on the one hand, acknowledge the need to alleviate pain and challenges; to fight oppressive practices that harm marginalized bodies and brains; and to sometimes restore capacities as an act of justice; without minimizing, on the other hand, the urgent need to alter social conditions largely responsible for disabling people.

Lastly, if we change the name of the medical model to the normalization model, then we can destigmatize just medical care. Negative associations with all medical care, which can inadvertently occur when we protest the medical model of disability, can be avoided by renaming the model to capture the essence of the harm – normalization. We could support healthcare practices that eschew normalization and could call for a firm refutation of procedures and practices that chase a slippery normal status or that claim to reduce or eliminate an inherent and inferior abnormality. In fact, as disability scholar Stephen Bunbury notes, ‘Until society recognizes difference and accepts that the definition of ‘normal’ does not exist…social exclusion [of the disabled] will still remain’, (2019, p. 40). This powerful stigma could be reduced by providing medical care that supports disabled people in reaching their self-determined goals; that helps disabled people achieve a higher quality of life as defined by disabled people; that provides the healthcare and supports disabled people need to live as full members of their communities; and that radically values the lives of marginalized and oppressed people by offering remedy and repair for body and brain damage caused by capitalist, colonialist, racist violence.

Conclusion

As disability scholars Tom Shakespeare & Nicholas Watson suggested a while ago, letting the social model and medical model stagnate as concepts and become dull tools of analysis is insufficient for the work of disability justice (2002). Limitations of the social model need to be explored bravely (Barnes 2012). New conceptualizations of disability and human diversity may provide a refreshed way to actualize the aims of the social model of disability while acknowledging a role for medicine and medical care in the lives of disabled people. For example, recent scholarship has been exploring body and brain diversities as a creolizing flow in human systems, forever challenging us to invent new ways of living together (Cadwallader 2010; De Coster 2012; O’Connell 2017). Normalization denies the benefits of human and non-human variation and has caused differences and diversity to become problematic.

I believe it is possible to provide disabled people with medical care, therapeutic supports, and rehabilitation not to make disabled people ‘normal’ but to heal, to assist disabled people in reaching goals they set for themselves, and to radically fight against the devaluation of the lives of marginalized people. It is possible to provide medical care without stigmatizing natural variation of bodies and brains (Clare 2017). For these limited circumstances when medical procedures and access to healthcare would be acts of justice or would provide tangible benefits such as reduction of pain, switching to normalization model of disability would deliberately divorce just medicine from normalization and would locate oppression correctly in normalization procedures, policies, and cultural priorities.

Most of us want and need a society that is unambivalent about body and brain diversities (Barnes 2018). A robust social model of disability that fights for accommodations and for just medical care can only emerge if we firmly contest the manufactured desire for a socially constructed normal body and brain. Normal status, defined as conformity to societal expectations for abilities, behaviors, and means of relating, has always been conferred and rescinded subjectively on both disabled and non-disabled people as a means of oppression. Whether a disabled person is externally pressured to normalize, or the disabled person has internalized this pressure, normalization on an individual level harms the mental and physical health of disabled people, threatens dignity, and denies human diversity. On a macro level, anti-normalization may be the pathway to a new form of civilization that is not based on exploitation, denial of interdependence, and extinction of crucial diversity. Changing the medical model to normalization model would best broadcast our renunciation of normalization.

In conclusion, we need to be very careful with the language we use. If we allow ourselves to explore the benefits of changing medical model to normalization model, we may have more room to fight disability discrimination; more room to acknowledge the sometimes painful and unglamorous aspects of being disabled; more room to center medical care as, sometimes, an aspect of justice; and more room to value human differences for the dimensions of experience they bring forth. Pushing for reconceptualization is fraught with danger and instability: If we embrace different bodies and brains, and completely reject normalization, then de facto we are agreeing to destabilize norms of working, living, and loving (Cadwallader 2010; De Coster 2012; O’Connell 2017). How will disabled people fit into our vision for a good society (Durkheim 1898/1969)? Are we ready to completely rearrange our notions of labor, belonging, humanity, and dignity? I think the risk is worth it. Joining together to fight a normalization model of disability while championing a reinvigorated social model of disability can help guide our work.

Acknowledgment

The author is grateful for support from the Hussman Institute for Autism.

Disclosure statement

No potential conflict of interest was reported by the authors.