It's time to move on from the Medical / Social Models of Disability
Let's examine an ethical path forward from the standpoint of Lived Experience and Place.
In preparing a recent journal article for publication, I came across a footnote in one of the references that I was using. In “The ecological-enactive model of disability: Why disability does not entail pathological embodiment,” from Toro, Kiverstein, & Rietveld (2020), the following appeared in small print at the bottom of page 3.
Work in the philosophy of psychiatry has shown that to do justice to the complexity of mental illness will require eschewing a simple reduction of mental illness to biological dysfunction, and similar arguments could be made for disability. … Murphy (2006) shows for instance how a scientific psychiatry will have to make reference to many different physical, psychological, and social factors. The explanation of the causal etiology of mental illness will have to advert to many different variables– biological, psychological, and social – to account for illness symptoms. What is distinctive about a medical approach to mental illness according to Murphy is that it aims for a causal understanding of mental illness through constructing a causal model of the illness. The medical models of mental illness and disability share a view of people with mental illness as being “worse-off” in some way as a consequence of their bodily impairment. They are disadvantaged relative to the non-disabled population as a consequence of “the failure of their physiology or psychology to perform a natural function” (Murphy, 2020). The dispute between the medical and social models is thus not about the role of social and cultural factors in causing disability. It is instead about whether disabled people are intrinsically worse off because of their bodily and functional impairments. The social model denies this and claims instead that disabled people are worse off because of how society treats them (see e.g., Barnes, 2016).
The Medical & Social Models of Disability
In a general sense, a model of disability aims to accomplish two goals. First, it attempts to account for what it means to be disabled. Then, it attempts to identify the causes of the disability (source). As such, a model should identify why it is that a person experiences the limitations associated with the particular disability. The medical and social models have returned competing and unsatisfactory answers to this fundamental question. The medical model tends to emphasize biological defects and / or dysfunctions when speaking of what disability is. On this model, the limitations disabled people experience are accounted for by reference to some biological pathology – a clinically observable impairment in bodily structure or function (source). The medical model recognizes that functional limitations are dependent on a myriad of environmental factors. In autism, it gives rise to functioning labels and the new strict diagnostic criteria. However, within the Medical Model, disability is understood as essentially a health problem that requires medical treatment aimed at enabling disabled persons to adjust to society. It also gives rise to talk of “cures,” and of a time when the condition is “eradicated” from the individual as well as from our species.
The social model, by contrast, attempts to account for the limitations disabled people experience in terms of their social isolation, oppression, and exclusion from participation in social life. Its proponents have distinguished impairment as understood in the medical model as a natural, biological fact, from disability conceived of as an artificial social classification (source). Within this Social Model, the limitations disabled people experience are caused by factors that come from outside of the person, not from their impairment or disability. In the view of those that advocate for this model, the real problems disabled people face come from the surrounding social, institutional, and physical environment with which persons with disabilities must deal (source).
I agree with the social model in one respect, that it is important to disentangle impairment from disability. A model of disability should, at minimum, account for the difference between bodily impairments that are normal, and those that are disabling. Everyone is “impaired” with respect to some functions (source). As much as I would like to, I am unable to see ultraviolet light. Neither can I swim across the Pacific Ocean. These examples of limitations in my abilities do not count as disabilities because they are not within the range of what is considered normal for human achievement.
Thus, what is the difference between an impairment that is classified as normal and one that is agreed to be disabling of a person?
The question of what it means to be normally embodied is central to understanding disability. As Davis notes in his introduction to the Disability Studies Reader: “To understand the disabled body, one must return to the concept of the norm, of the normal body” (source). According to Davis, the concept of normality as we use it today has a relatively recent history. It first emerged alongside the field of statistics in the middle of the 18th century. Notions like average and standard deviation were initially applied to astronomical observations, but they were applied to the human body in the work of Adolphe Quetelet (see The Bizarre and Racist History of the BMI) and quickly took hold within the eugenics movement. By identifying the average with the normal, the physiologist could determine objectively (i.e., quantitatively) whether a specific function or parameter such as height, weight, intelligence or strength was normal or deviant. Furthermore, based on such a statistical conception of normality, a ranking could be formed from what is normal in a population to what is above or below average. Variations from what is normal can be either good and socially desirable – better than average intelligence – or bad and undesirable – a physical defect or disease to be treated and cured. As Davis notes: “When we think of bodies, in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants.” (source).
The philosophical leap from statistical deviance within large populations to pathological embodiment fails to take into account the lived experience of the individual. The medical model understands the embodiment of the disabled person primarily in terms of physical impairment caused by some underlying pathology. One of the many problems with such an understanding of disability is that it conceptualizes the body of the disabled person from the outside in terms of clinically observable impairments or loss of function relative to some normal or pre-existing state. Such a third-person understanding of the body of the disabled person fails to recognize their lived embodiment or lived experience.
This understanding of the disabled person’s embodiment from a third-person, objectifying standpoint is shared by the social model. According to the social model, disabled people embody certain biological properties that are classified as physical impairments. The social model claims that based on such a classification disabled persons are then subjected to social forms of prejudice, exclusion, and oppression. The limitations disabled people experience are thus traced to their social circumstances whilst the lived experience disabled people have of the world through their embodiment in it is at best sidelined and ignored. But as Silvers (2010) has noted: “to ignore experiences of being weak, enervated, in pain and vulnerable in modeling disability is deceptive because these are the most salient experiences in most, or at least in many disabled people’s lives.” Everybody has such experiences from time to time. The worry Silvers is articulating is that such experiences may so permeate the lived experience of some disabled persons as to make their lived embodiment different in kind.
The problems I have just described stem from a medicalized understanding of embodiment in terms of physical impairment. Both the medical and the social model conceive of the disabled person’s physical impairment from a third-person, objectifying standpoint. What such an objectifying conception of the body misses is how the impaired body is also the medium of the disabled person’s experience of the world.
For these reasons, and many more, I ground the work in my upcoming Book, No Place for Autism?, in the Ecological-Enactive (EE) model of disability. EE offers a different perspective on the embodiment of disabled persons, one that is better placed to do justice to how the body of a disabled person situates them in the world. I also ground the work in Place Identity. Place has so much to do with disability, even more so given the changes in the DSM.
You see, to be normal is for a living body to be able to maintain a state of dynamic stability with its environment - it’s Place. This is something the organism needs to continually reestablish by regulating its engagement with the environment based on bodily normativity. The stability the organism achieves is always hard won under conditions of continuous change, which is why it is described as a “dynamic” stability. The person must therefore always be ready to act not only in familiar circumstances they have encountered regularly in the past, but also to adapt their activities to novel situations that differ from anything they have previously encountered. Indeed humans, in adapting their activities to the particularities of a given situation, cannot just repeat what they have done in the past. They must adapt what they have done in the past to the particularities of the situation that now confronts them. Think about bicycling through a busy city. You follow the same route but under unique traffic conditions that will never be repeated in exactly this form again. To maintain a state of equilibrium, you must adapt what you have done previously to these unique and often unrepeatable conditions. To respond adequately to affordances, as they take shape in this particular situation, will often require you to risk and be tolerant of potential failure. You may, for instance, almost collide with another cyclist talking on their mobile phone, or with a pedestrian that casually walks into the cycle path. Yet, most of the time you succeed in avoiding injury by spontaneously taking measures that allow you to skillfully correct for such incidents as they arise.
It is this capacity of the living body to continuously restore dynamic stability by adapting in better or worse ways to uniquely occurring conditions that we take to be a defining characteristic of a healthy living body as contrasted with one that is sick. Canguilhem (1991) associates health with the capacity to follow “new norms of life” – a capacity he associates with bodily normativity. Being healthy means being able to establish a state of dynamic stability with the environment, and not only in the present situation, but also in a near open-ended range of other situations going into the future. The bodily normativity that governs our engagement with our environment will need to be made anew on each occasion because dynamic stability is continuously achieved anew, often under uniquely occurring and unrepeatable conditions. The norms that regulated our conduct in the past are a guide to what we do in the present, and going into the future. They cannot however fully determine what we do in other possible situations we might find ourselves in. To achieve dynamic stability in these other possible situations will call for transcending the norms that have governed our activities in the past, and the following of new norms that allow us to establish dynamic stability under the new and often unique and particular circumstances we now encounter. To adapt to changing conditions, we must be ‘more than normal,’ that is, capable of adapting not only to the demands of our current situation based on what we have done in the past. We must be “normative” in the sense of being able to institute new norms that allow us to reach dynamic stability in a changing environment in which we are confronted with novel situations.
This is what is meant when incorporating Place Identity into the discussion. Our ability to successfully achieve dynamic stability will vary from place to place. It also gives rise to the important question that stems from the revisions to the DSM - can a person be autistic independent of place or task?
Back to the ecological-enactive model of disability
The originators of EE note that their model of disability combines ideas from enactive cognitive science and ecological psychology. Assuming that most won’t know what these terms mean, let’s take a quick look at these two ideas.
Enactive cognitive science takes as its starting point that cognition must not be understood as a capacity for getting an internal representation of a corresponding external reality, which in turn would provide a foundation for supporting thinking, learning, and problem solving. Instead, cognitive processes are deeply entangled in action. Cognition is thus best understood as “enactive”; that is, as a form of practice itself. From the point view of enactive cognition, cognition comes from bodily action and serves bodily action, that is, cognition is embodied action. The key postulate of Enactive Cognition is action-related and action-oriented, with the capacity to generate environmental structure by action (source).
Ecological psychology is an embodied, situated, and non-representationalist approach to cognition pioneered by J. J. Gibson (1904–1979) in the field of perception and by E. J. Gibson (1910–2002) in the field of developmental psychology. Ecological psychology, in its very origins, aimed to offer an innovative perspective for understanding perception and perceptual learning that overcomes the traditional psychological dichotomies of perception/action, organism/environment, subjective/objective, and mind/body (source).
Thus, the EE model uses an analysis of health and illness to distinguish “normal” from “pathological” modes of living embodiment. A person is normally embodied if they can adapt their activities adequately not only in response to the particularities of their current situation, but also in responding to a near open-ended range of alternative possible situations. They are able to transcend their current situation as is shown by their readiness to respond adequately to many other eventualities and possibilities. They can institute new norms in new situations (source). By contrast, when a person is unable to institute and follow new norms and instead acts exclusively on the basis of the norm of avoiding adapting to change then EE considers them as being pathologically embodied. A person is pathologically embodied when they morbidly avoid situations that could lead to catastrophic reactions by withdrawing from life, confining themselves to regimented and ordered situations which they can manage.
It’s important to note that disability doesn’t necessarily entail pathological embodiment because impairment doesn’t necessarily lead to a shrinkage in the environment, and the withdrawal from life characteristic of pathological embodiment.
I also think in terms of my own lived experience and how it contrasts markedly with the descriptions of the lives of a number of autistic people. The experiences they describe make it clear that they are able to skillfully explore for new affordances in order to establish new and better ways of doing things. This is the essence of normal embodiment as we have described it above. Others describe situations where they are completely unable to make their way in the world so skillfully. For me, I have grown into my ability to explore, yet I don’t yet consider that exploration to be skillful. The work done in my dissertation illustrated that we grow into our abilities as we age, with the optimal time / maturity coming between 45-65.
Can’t we just be autistic?
It’s clear, to borrow from the British Psychological Society (BPS), that ‘abnormal’ behaviour and experience exist on a continuum with ‘normal’ behaviour and experience and are subject to similar frameworks of understanding and interpretation. These include the assumption that, unless there is strong evidence to the contrary, our behaviour and experience can be seen as intelligible responses to our current circumstances, history, belief systems, culture, and bodily capacities, although the links amongst these may not always be obvious or straightforward (source). It’s also clear that the APA, the elephant in the room, has not created a space for autistic / neurodivergent identity in the recent evolution of the DSM.
Indeed, the BPS sees autism more in terms of surviving exclusion and competitive defeat as non-typical or non-conforming (source). They note that the narrower the range of acceptable ways of being, and the more individualistic and competitive the social norms, the harder it is for people who are non-typical in various ways to find a social role and place for themselves and the more likely they are to experience feelings of failure, inadequacy, shame and exclusion.
It has been suggested that the enormous rise in diagnoses of ‘autism spectrum disorders’ and ‘Asperger’s’ may partly reflect demands made by highly industrialized and service-oriented economies for successful employees to display emotional behaviours such as (faked) sociability, warmth, gratitude, passion and so on – skills which do not come easily to everyone (source). Given all this, it is hardly surprising that in many parts of the Global South, there may be no equivalent categories to the experiences that DSM and ICD label as ‘depression’, ‘anxiety’, borderline personality disorder, anorexia, autism, and so on. In fact, the distinction between thought and emotion may not even be recognised (source) and the very notion of an individual who exists in some sense independently from their social network may be alien.
End Infodump …
I don’t know that I have a proper ending to this infodump. I’m collecting thoughts, proposing ideas, revising whole sections multiple times over, and trying to keep things cohesive. Let me know what you think in the comments below. Maybe, we’ll just treat the infodump as a conversation starter and see where this goes. Thanks again for your support.
— December 16, 2023 Note —
Some of the materials herein have made it into my book, No Place for Autism? It was released in February 2023 from Lived Places Publishing and is available at Amazon and other major book retailers worldwide.