The Medical and Societal Attempt to Identify and ‘Fix’ Physical States of Disability. Topics discussed: functionalism, normal function, being ‘hooked up wrong’, phantom martian pain, first-person authority, the body as a foreign object, and baseline populations.
Abstract
This paper will discuss what it means to be normal or disabled in functionalist terms, revealing that this philosophy of mind fails to account for the diversity of human function. Firstly, functionalism will be understood as the view that mental states are determined by physical states and the functions that they play. The functionalists’ definition of disability will be presented; the lack of full physical function in comparison to that of the baseline population (human species). The healthcare that disabled people receive is influenced by these theories; functionalism would describe the role of medicine as maintaining the normal functioning of individuals and society. It will be seen that the theory of functionalism confuses impairment and disability with the ‘sick role.’ Functionalists fail to recognize that disabled people do not necessarily have ‘something wrong with them.’ This paper will claim that there is no single or successful definition of normal functioning (functionalism included), because of its subjective nature, determined by cultural and personal values. Secondly, Lewis’s thoughts on mad pain versus martian pain will be presented showcasing that pain is relative to a given species. Phantom limb pain will be likened to that of martian pain and disability will be presented as an exception to the human species. The line of difference and other social constructivist conceptions of disability will be discussed to contextualize the need for a diverse understanding of difference. Thirdly, a personal account of my facial difference will be presented to demonstrate that the same brain state can result in different behaviors. The difference between congenital versus acquired disability will be seen as an example of a ‘normal’ state that is not perceived by the baseline as such. It will be seen that procedures that attempt to ‘fix’ congenital differences can leave the patient feeling more abnormal. Population baselines and social context help to define disability. It will then be problematized that there is no ‘right kind of population’ to draft the functional baseline from. Finally, this paper will show that functionalism reproduces failed narratives of disability, instead of considering the cultural and economic forces that perpetuate them. It will be understood that the multiplicity of difference, in mental and physical states, and the ambiguous definition of normal, that is relative to a naive baseline population, shows functionalist thought to be incapable of properly accounting for the multifariousness of disability.
Defining and Discussing Functionalism in Terms of Disability.
According to functionalism, what makes something a mental state does not depend on its internal constitution, but rather on the way it functions - the roles it plays in the system of which it is a part of. In this view, mental states are identical to physical states, which are identified by their functional roles. With this sentiment, if someone has a physical difference we can hold them to also having a mental difference. Let us further explore this mental-physical relationship. Pain is the state that is caused by bodily injury to produce the belief that something is wrong with the body. This results in desire for relief, anxiety around the state and perhaps moaning or crying (Levin, 2018). Mental states, under functionalism, are identified by the behaviors they manifest rather than what they are made of.
In this philosophy of mind, physical things have structural essences; being a thing of a certain composition, quite independently of what they do or can be used to do. It happens that diamonds can cut glass, but so can many other things that are not diamonds. If no diamond ever did or could cut glass, then they would not cease to be diamonds. Let us place this thought in terms of human difference. Identities and abilities can be constituted by relations of one individual to other beings in their species, and by what they can and cannot do in comparison to the baseline population. Medical diagnosis can help to constitute individuals in relation to other humans with similar conditions. This creates sub-populations and structural essences. If every human had the same diagnosis then the disability connected to that diagnosis would not be a disability, it would instead be a structural essence of being a human. Being a pen is not a matter of being a physical thing with a certain composition, it is a matter of being a thing that can be used to perform a certain action, namely, writing on paper. There may be pens that are thick, colorful or smelly but what makes something a pen is not its material composition rather what it does, could or is supposed to do. Its function. (I urge you to re-read that sentence, replacing ‘pen’ with ‘human’). In this view as long as disability can be compensated or ‘fixed’ the disabled can augment their senses and remain fully human, attaining their species' conceived full function (Polger, 2021). The healthcare that disabled people receive is influenced by theories and although positivist theory remains the dominant influence, others are beginning to have a significant impact on the way societal and medical fields view the ‘disabled individual.’
Functionalism emphasizes medicine’s role to cure and to maintain the “normal” functioning of individuals and society. In this medical model, the ‘sick role’ involves being compliant and wanting to get ‘fixed.’ This can make people with incurable conditions, including disabled people who are classified as sick, seem to be deviant. Those that are classified as sick are seen to be even more deviant if they do not seek medical help or attempt to be ‘fixed.’ This link between disability and social deviance that functionalists make supports the continued dominance of professionally controlled welfare services for disabled people. Normalization theory, a variant of functionalism, underlies some programmes that claim to enable ‘devalued’ people to lead culturally valued lives (Oliver, 1998). An example of this controversial approach is cosmetic surgery. “Functionalism confuses impairment and disability with the sick role. By failing to recognise that disabled people do not necessarily have ‘something wrong with them,’ it simply reproduces discriminatory norms and values - instead of addressing the cultural and economic forces that precipitate them” (Oliver, 1998). The crucial problem is that disabled people are not a homogeneous group that can be accommodated easily within a society that takes little account of their individual or collective needs. Disability is fluid and extensive in its number of physical and mental health conditions, which can fluctuate throughout an individual’s life. Each diagnosis has unique histories and idiosyncrasies, making them, I would argue, not uncommon in relation to the general population. Clearly, their situation cannot be understood or transformed by any diagnosis based on narrow theories of conventional normality or uniformity (Oliver, 1998).
“Definitions of normal functioning, however, are subjective, determined by cultural and personal values.” (Rogers, 2015). The myth of the normal brain and body attempts to simplify and standardize in an attempt to classify the human state. In Grade 9 I went on a field trip to The Royal Canadian Mint in Ottawa, our class was given a tour which ended with us getting to hold a gold bar. The tour guide explained that the exact value of this bar is defined by its density, size and distinct chemical material. This was a clear representation of the world's standard for a gold bar; 1 kilogram (32.15 troy ounces) , a width of 40mm, length of 80mm and depth of 18mm. These details can be guaranteed by the manufacturer’s stamp. All other gold bars in the world can be compared and calibrated to this prototype, it is ‘normal’, the standard. In short: humans are not gold. There is no such standard for humans and yet we still believe we are able to classify normal, disabled and different. And yet, In order for there to be a state that is disabled, defined through negation, there must be enabled or normal states (Armstrong, 2015).
An objection to functionalist thought is that of inverted and absent qualia. Presented by Ned Block, this objection maintains that there could be an individual who is in the state of satisfying the functional definition of our experience of purple, but is experiencing green instead. An individual with inhibited senses ie. color blind may not realize their difference if it is congenital, it is often through social comparison and diagnosis that disability is realized (Byrne, 2020). In this view it is possible for a mental difference to go unnoticed if the being is able to correct its physical manifestations. If someone is born with a congenital difference that manifests in ‘abnormal physical function’ they may learn to correct and distort their normal physical state in an attempt to fit others' normal. In these cases has the mental state of the physical disability changed as well? Under the functionalist view yes.
Mad Pain and Martian Pain by Lewis.
In Mad Pain and Martian Pain philosopher Lewis argues that a theory of pain must reflect the most basic intuitions of both functionalism and identity theory. He proposes two types of painl; one whose physical explanation of pain differs from ours and one whose reaction to pain differs from ours. Lewis suggests that only a complete theory of mind will be able to explain how each of these individuals is in pain (Lewis, 1983).
Firstly, Lewis presents mad pain, a human being whose brain state of pain differs from the majority. While in mad pain his mind turns to mathematics and he begins to snap his fingers and he is not inclined to inhibit or prevent the pain from occurring. Secondly, he presents martian pain, a being, which is not human at all, but when the subject is in pain it reacts in the same ways that humans do and is strongly inclined to inhibit any potential pain. The physical explanation of this martian pain is different from that of human pain as this subject has a hydraulic mind. Lewis believes martian pain lacks the bodily states that either are in pain or else accompany it in us (Lewis, 1983).
Is disability that inhibits function mental or physical? How can we explain a phantom limb under the functionalist logic? Let us liken phantom limb pain to that of martian pain. The experience of a phantom limb is the feeling of pain but nothing physical attached to that pain. Phantom limb pain (PLP) refers to ongoing painful sensations that seem to be coming from the part of the limb that is no longer there. Lewis attempts to argue that the madman and the martian (phantom limb) are both in pain. This is not the case in identity theory, the belief that mental states are brain states. Proponents of identity theory believe that the madman is in pain but the martian is not (Smart, 2007). Functionalists, in contrast, believe that the martian is in pain while the madman is not. Although combining these two theories would result in the explanation that both are in pain this is not justifiable. Lewis states instead that martians are in pain in the sense that they have a state which realizes pain, even though that state is very different from that which realizes pain in human beings. According to Lewis the madman is also in pain, in a different sense than the martian, because he is experiencing a state which typically realizes pain in human beings (Lewis, 1983).
Lewis concludes with the concept that pain is relative to a species. The man experiencing mad pain is essentially an exception to his species (the human species). May I allude to those with disabilities being an exception to their species. Lewis states that ‘he feels pain but his pain does not at all occupy the typical causal role of pain’ (Lewis, 1983). He is instead in pain because instantiated in him is the physical state, which is normally an instantiation of pain in his species (human beings). This person is a human and they are in the physical state that plays the functional role of pain for humans. Therefore they are in pain, even though their physical state doesn’t play the functional role of pain for them. We may also argue here that we have no idea what others' mental states are, we can only infer from their behavior (Meyer, 2020). How are we able to discover mental disability? Through physical manifestations of that different state. We reflect on our own behavior and infer the mental states that we attach to that behavior. We project that to others and assume that when they perform the same physical behavior they are also in the same mental state (Meyer, 2020).
“Hooked Up Wrong” (Lewis, 1983, pg. 219).
Happiness causes people to smile, when I am happy I smile, but the behavior that accompanies this brain state is physically unique. I was born with a facial difference, which results in asymmetry in my face, specifically my smile. My difference is not diagnostic and untreatable, and although I have seen many doctors in a variety of fields, they all have different theories as to how my smile came to be. My mental state of happiness results in a different physical state in comparison to the population's baseline. Am I hooked up wrong? This physical difference results in an ‘unsuccessful’ behavior in comparison to the rest of my species, but it serves the function of my smile.
Defining Disability
Definitions allow us to have a common understanding of a word or subject. There are many views on disability and how the experience of difference should be defined, often with an underlying tone of assumption from those who do not live the experience themselves. Barnes presents a social constructivist conception of disability that includes mere- difference, bad-difference and neutral simpliciter. For a disability to qualify as bad-difference it must have a strong tendency to undermine the wellbeing of the individual. The mere-difference view acknowledges that being disabled makes you a minority. The mere-difference view of disability states that disability does make you different, but it is not something that in itself leaves you worse off (Barnes, 2016, Ch.2). Barnes suggests that disability has a neutral relationship to well-being and that disability in itself neither adds to nor takes away from total well-being. Barnes sees disability as a neutral simpliciter, meaning it leads to both good and bad experiences, depending on the combination of factors it is married to. Functionalists see any physical difference that inhibits function as bad, they fail to recognise that disabled people do not necessarily have ‘something wrong with them. When a disability is neutral simpliciter it in itself, neither positive nor negatively shapes your experience (Barnes, 2016, Ch.3). Social categorization compartmentalizes people by their difference; as old (versus young), white (versus Asian), diagnosed (versus undiagnosed) or disabled (versus abled). When people are categorized by social group (or exclusion thereof), we tend to respond to those individuals as members of said group as opposed to the individual. Barnes sees social categories as a means for explanation, to work for progress and change (Barnes, 2016). It allows for understanding and thus improved response to political demands. Having a social category also helps to make sense of one's lived reality (Barnes, 2016). Carel states that an understanding of one’s body, through the diagnosis of illness or disease, can change how one perceives their capabilities (Carel, 2012). In phenomenology, disease is a physiological process(es) and illness is the experience of physiological process(es). Shift in a mental state (understanding through validation of diagnosis) can lead to different physical states. Without a diagnosis I do not know what physiological processes are causing my facial difference, but I am aware of the impact and physical experience of living with these unknown physiological processes. Disability is the experience of a physical difference that is not necessarily a disease-difference (Barnes, 2016). I am now aware of my facial asymmetry, and through social and cultural experiences, I have been able to ‘define’ my own physical difference. What is a normal difference? Mine is an exceptional difference.
There is diversity in the experience people have with disabilities, and what determines this is not necessarily the disability, but the intrinsic and extrinsic factors that affect it. There is a pervasive tendency among philosophers to dismiss self-appraisals of the disabled population as they are perceived to reflect “ignorance, self-deception, defensive exaggeration or courageous optimism” (Wasserman, 2016). Personal accounts act as strong evidence for a workable method of determining well-being. Testimony as evidence is a growing body of psychological research in the field of well-being, and personal lived experience is an important component of disability that is sometimes overlooked in or structured by the diagnosis of a disease. My physical difference has been shaped by my personal lived experience, whereas my life has simply been lived with a physical difference.
Being “Fixed” - “Acquiring” Normal.
Many individuals who are ‘hooked up wrong’ (Lewis, 1983) are eventually ‘fixed,’ undergoing procedures which make their behavior more tailored to their species’ baseline. As functionalists believe, undergoing procedures can correct disabled individuals to the ‘normal’ human state of functioning. Individuals with congenital disabilities have no mental concept of any other ‘normal’ while those that acquired disabilities know what ‘fitting’ the population's baseline feels like. Those born with congenital differences choose to undergo medical procedures can find the adjustments to be overwhelming. Dr. Oliver Sacks wrote, "for here the patient's personhood is essentially involved, and the study of disease and identity cannot be disjoined." (Doidge, 2016) In these cases, individuals seek solutions to their congenital mind and body problems that differentiate them from that which is considered normal. After seeking and finding solutions to become more normal, individuals can regret or work to reverse the procedures. It is hard to quantify the value and loss of a disability. Barnes presents that it would be seen as helpful for a doctor to perform a surgery that resulted in a disabled individual becoming nondisabled (Barnes, 2016). In contrast, it would be seen as destructive and harmful for a doctor to perform a surgery that results in an individual becoming disabled. I argue that procedures which attempt to correct an individual’s congenital difference instead create a disability.
Personal Testimony: The Body as a Foreign Object
In 2015, I underwent a procedure, which had been presented to me as an option to ‘dull’ my facial difference from a young age. In this cosmetic surgery a serum similar to Botox would be injected into the side of my smile that is fully functioning and paralyze it in an attempt to balance out the asymmetry. The serum was intended to affect my facial nerves for approximately 3 months, within a day the side of my face that once had full motion was not slightly frozen but fully paralyzed. The doctor had doubled the amount of serum that he should have injected and as a result my face was deformed for 6 months.
My difference from what is ‘normal’ is confined to one half of my face, I would argue that this procedure was intended to alter my response even further from the norm. This procedure made both sides of my face differ from the norm. The way I had always smiled, talked, and ate changed and my ability to perform things I could once do was hindered. Initially I had nothing, personally, to base my lack of movement off of (Schimmel, 2017). My normal was altered and my function was reduced in an attempt to reach the medical and societal definition of normal human behavior. The health professional had performed a procedure that resulted in me acquiring a disability and for the first time in my life my smile became something foreign to me. Not only was my physical state changed but my mental state was impacted. I now know what it is like to not have the smile I was born with. I looked in the mirror after this procedure and was suspended in between my normal and the population's baseline ‘normal’ - stuck in limbo, belonging to neither. My phenomenological experience had changed, making me question my current and one from birth. This incident was an intrusion on my way of being; perhaps I am ‘hooked up wrong’ but I underwent a procedure to ‘fix’ my behavior, one that is closer to the baseline and I immediately regretted it. While this procedure attempted to correct my physical state and manifested behavior it failed to allow for function. In an attempt to fix my difference the medical sphere created a fault.
What is the right kind of baseline population?
Discussions of well-being more often than not leave out the perspective of the disabled individual, assuming that their level of happiness is much lower than it is. Happiness is evaluated as lower mainly because of difficulties attributed to physical impairment and diverse behaviors rather than the attitudes and social barriers that impair the differently abled individual. This is one issue of first-person authority; individuals have privileged knowledge of their own mental states. This self-knowledge is a part of widespread controversy in philosophy of mind with general agreement that first-person ascriptions of mental states carry a presumption of correctness - the degree of assumption differs in accordance with the degree of normal function (Wasserman, 2016). The normal physical state of being in a certain mental state is determined by the people that are ‘hooked up right.’ All individuals hold a degree of difference, let us inquire what the line of difference is. Congenital disability is the individual's normal, but they are not perceived by others as normal. Diagnosis allows for community, solidarity and a space in which you can feel the ‘normal’ you know you are. Aboutface is a camp for people with facial differences where the output of a smile is varied in difference. There can be different populations from which 'normal' can be defined (Allen, 2020). Ultimately if I grew up at Aboutface camp where everyone had a facial difference similar to mine it would be normal. Being born with a disability is very different then acquiring one. Instead of being told your physical state is wrong by others, you know your state to be wrong by yourself. Acquired disability results in an outer body experience where something that was once yours is taken away, there is something lacking (Schimmel, 2017). Lewis proposed the appropriate population that the mental state realizer should be relativized to. This question can also be stated; which group do we plug into ‘Y’ in ‘X is in pain just in case X is in the state which realizes the causal role of pain in Y?’ Lewis believes the population to be us (humans), since we developed the concept of pain. Another option to this dilemma is if we are attempting to decide if X is in pain, it should be the group X is a member of, and/or a group where X is not exceptional (Lewis, 1983). Lewis provides the example of a sub-population of human beings that the state that plays the causal role of pain instead causes thirstiness. If this is the case, we might be tempted to think of the sub-population as a group of mad men, or of martians. There is no clear way of deciding in which sense they are in pain. Congenitally disabled individuals are a sub-population of human beings, in which they have their own causal roles of ‘pain’, ‘normal’ and ‘disabled.’