Potentially disabled?

ABSTRACT

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis. Myasthenia Gravis is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness. Currently, I have only minor symptoms, I am not seriously impaired, and I do not suffer from any social disadvantage because of my illness. Yet, my life and my body since my diagnosis feel different than before. In this paper I aim to make this feeling intelligible and propose that it is a state of what I call ‘latent impairment’. Latent impairment is a state of being ‘in between’, different from being actually impaired and also different from being abled-bodied. The theory takes its cues both from social constructionist theories of disability as well as theories of (chronic) illness and their focus on the importance of subjectivity. Furthermore, I suggest that a phenomenological understanding of latent impairment can show possible ways of becoming an ally to the DRM.

KEYWORDS:

• Disability
• chronic illness
• latent impairment
• social construction

1. Introduction: being in-between

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis (MG). MG is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness; in most patients first symptoms involve the eyes, resulting in drooping eyelids and double vision. But other muscles can be affected as well, resulting in speech, swallowing, walking and, most extremely, breathing problems. Patients can have crises that are triggered by various biological stressors such as infection, fever, an adverse reaction to medication, or emotional stress and that result in paralysis of the respiratory muscles, necessitating assisted ventilation to sustain life. Nevertheless, nowadays most patients with MG lead relatively normal lives and have a normal life expectancy when undergoing treatment for their symptoms. MG affects 50–200 per million people and is hard to diagnose because of its rarity. However, diagnosis is becoming more common due to increased awareness.

I live in a major city. Just in the last two years two people have lost their lives in traffic on the intersection in front of my apartment. Forty five persons have been killed in traffic in 2018 and 36 in 2017 in my city, 89 in 2000. Hence, the chance to be killed on the street in front of my apartment is a real possibility. For most of us, there is a risk to be overrun by a car or to be injured in a car accident one day. In other words, there always is and always was a danger of being physically impaired and in need of long-term treatment or other forms of help – even apart from the high risk of impairment due to old age. Yet, very few spend more than a fleeting second on this possibility; it is simply not something that grips our attention unless someone close to us has had an accident. I am not in need of medication or help because of my disease at this moment, however, since the diagnosis ten years ago, this disease has a grip on me – it became my constant travel companion. It is different than the possibility of being overrun by a car. More real. More threatening. Yet, this disease – my travel companion – and the possibility of impairment are clearly different than being disabled. I am not disabled at the moment. I do not identify as disabled at the moment. I do not suffer from any discrimination due to my disease or the possibility of impairment in the near future. But it also feels different than being abled bodied – although, technically speaking, I am right now. My life and my body since my diagnosis feel different than before. This paper’s task is to make this feeling intelligible, to understand the in-between state.¹ This is a deeply personal investigation and not one that necessitates public acknowledgement. Yet, I am convinced that the conclusion to this personal investigation might be philosophically fruitful. It shows that there is a possibly large group of people that live in the in-between state (more about it in what follows); due to medical diagnosis or other physical or psychological impairments they have reasons to seriously consider and maybe worry about a future in which they are disabled or seriously impaired. And, I contend that acknowledging this in-between state can give those like me important tools to make sense of their experiences and might yield more allies for the disability rights movement (DRM).

The goal of this paper is to develop a phenomenological understanding of what I call ‘latent impairment’ that can show ways to ally with the DRM. The account of latent impairment² that I bring forward roughly reads as follows: A person P, who has a chronic illness (or some other specific state) that carries a high probability of (physical or other) impairment is latently impaired in so far as a significant part of their mind is taken over or blocked by concerns about their illness and tasks related to this. I’ll proceed as follows: I begin with a brief discussion of why it is important to understand one’s ontological status and proceed to discuss three theories of disability that speak to this; first, the social model of disability (Section 2), then Tremain’s social constructionist model (Section 3), and, finally, Barnes’s moderate social constructionist account (Section 4). According to all of them, someone with more severe symptoms of MG would clearly count as disabled and all of them acknowledge that there are invisible disabilities or impairments that are only experienced some of the times yet not always and so make room for counting even pre-symptomatic cases or minor symptoms of MG (for ease of reference, call these ‘MG*’) as a disability.³ Yet, while important for political reasons, this can hardly accommodate the personal experience of feeling ‘in between’. In fact, according to most theories of disability someone with MG* either does or does not count as disabled, thus, failing to track the particular feeling of neither belonging to the group of disabled nor the group of abled bodied persons.⁴ However, all three accounts provide important insights for the theory of latent impairment that I seek to advance in this paper. In Section 5, I discuss Susan Wendell’s ideas about the relationship between disability and (chronic) illness and use the insights of the theories of disability discussed beforehand and Liz Crow’s arguments on the relationship between disability and impairment to argue for a phenomenological account of latent impairment that sheds some light on my so-called in-between state. Finally, I conclude, in Section 6, that acknowledging this in-between state can give those like me important tools to make sense of their experiences and might yield more allies for the DRM.⁵

2. The social model of disability

Disability is often thought of as a medical or otherwise natural condition. According to these naturalistic accounts of disability, disability is either contrasted with normal functioning or regarded as a lack of a physical ability. That is, (a) a disabled person is a person that does not function normally or does not function in the same way as most others do, or (b) a disabled person is a person who lacks a (significant) physical ability that most others have. Disabilities are here explained in terms of natural or objective features that disabled bodies have or lack. However, it is far from obvious what normal functioning is and which physical abilities most people have. Many people depart from such normal functioning or from these significant physical abilities without, intuitively, counting as disabled (cf. Barnes 2016, 13ff). Furthermore, besides it being far from obvious what such abilities amount to, these accounts situate abilities solely in individuals and, hence, obscure the many ways in which abilities are relational (cf. Reynolds 2019). Finally, appealing to normal functioning or individual abilities can come with the deeply problematic assumption that bodies that function normally or have all the significant abilities are necessarily worth more and that not functioning normally or not having all the significant abilities is bad or harmful for the disabled person (cf. Reynolds 2019; Campbell and Stramondo 2017; Kittay 2005, and many more).⁶ It is for these reasons that philosophers of disability have vehemently critiqued naturalistic accounts and instead have brought forward a range of views best described as social constructionist accounts.⁷ Social constructionist accounts attempt to explain disability not via medical or natural facts but via social facts; i.e. the general idea is that the set of instances that we (want to) categorize as disabilities are unified due to social features.

Before I proceed with a discussion of social constructionist accounts of disability, let me briefly speak to the question of why it is important to understand one’s ontological status and how these theories can help to do so. In her work on mental disorders, Nomy Arpaly discusses the implications of medical diagnoses and writes that ‘humans, it seems, fare amazingly poorly when it comes to acknowledging the reality of mental states the likes of which they have not experienced’ (2005, 295). A medical diagnosis can function as a reassurance that something is actually going on with one’s body or mind, that we are not just imagining things, and it can help to convince others that we are not just imagining things.⁸ Similarly, with other labels or descriptions; they can give meaning to our experiences and our identities. Miranda Fricker draws attention to this aspect when discussing the notion of hermeneutical injustice as ‘the injustice of having some significant area of one’s social experience obscured from collective understanding owing to hermeneutical marginalization’ (Fricker 2007, 158). Being unable to understand a significant experience is problematic whether or not this is due to hermeneutical marginalization. Hence, for the sake of our own well-being – including the possibility of understanding one’s experiences and identity as well as articulating what we experience and who we are to others – it can be important to find adequate ways of describing our ontological status.⁹ In a paper on illness and bodily doubt, Havi Carel (2013) argues that a disruption of bodily certainty – of what our body can and will do – can lead to loss of continuity, loss of transparency, and loss of faith in one’s body. Part of who we are is about how we think of our bodies and the actions we can do with them, hence, loss of faith in one’s body can seriously damage our understanding of who we are. A diagnosis of MG even if pre-symptomatic changes our perception of our experiences, our bodies, and of who we are in some ways. Yet, as long as MG is pre-symptomatic or results in only minor and not salient symptoms (here MG*), it is questionable that it really does alter our identity – in most ways we are still exactly who we were before the diagnosis. It can, thus, be valuable for us and, as I argue at the end of the paper, in general, to understand our ontological status of being in-between. And I propose that insights from social constructionist accounts of disability can aid in this task.¹⁰

The social model of disability, probably the most widely endorsed model in philosophy of disability at the time of writing this paper, distinguishes between disabilities as being completely socially constructed and impairments as the biological or physical entity that corresponds to it.¹¹ Although clearly not all advocates of the social model agree about what disability is precisely and in what way it is socially constructed, they share the underlying idea that disability describes the social disadvantage due to ableism that disabled people suffer from. For example, the British social model of disability (BSM) defines disability as ‘the form of social disadvantage imposed upon “people with impairments” by a social system that discriminates against them and excludes them from full participation in social life’ (Tremain 2018, 37). That is, according to the social model, disability is understood relationally; it describes the relation between the disabled person and their social environment. In comparison, according to medical accounts, the limitations that a disabled person experiences are the result of their impairment. Importantly, these two drastically different models – the social model and the medical accounts – suggest different underlying assumptions concerning the well-being of disabled persons.¹² According to the social model of disability, the well-being of disabled persons is reduced due to the social stigma and discrimination that these people face. Advocates of the other view often claim that disabled persons are worse off necessarily; that is, their well-being is diminished even in a world without discrimination and injustices. In other words, the first think of disability as one way – among many – of being different. Here, disability is similar to gender or race. The latter think of disability as a feature that makes a disabled person worse off than a non-disabled person. Hence, which model we choose has important consequences for disabled people.

Whether a person counts as disabled or not according to the social model, hinges on whether a person experiences social prejudice due to their impairment.¹³ Let us entangle this idea. A natural impairment turns into a disability if the person having the impairment suffers from or experiences social prejudice or other social disadvantages. A comparison might help. Many feminists draw a distinction between sex and gender. A person’s biological sex (their reproductive system and secondary sex characteristics) is different from a person’s gender, which describes either the learned social role a person has or their personal self-identification. The idea behind this distinction is to question claims that ascribe women certain (subordinate) roles or (devalued) characteristics because of their female nature, instead, the social role that women have is socially constructed within a binary and hierarchical gender system. This is why some feminist philosophers, prominently Sally Haslanger (2012), call for elimination of hierarchical gender roles and, thus, in effect for the elimination of women and men. Similarly with disability: If there is no ableism – no social prejudices and social disadvantages –, then there are no disabled persons (although, clearly, there are still persons with impairments).¹⁴ According to the social model then, impairment is necessary for saying that a person is disabled but not sufficient. Hence, mere impairment is not enough to be disabled. And, disability ‘is neither equal to nor a necessary consequence of people’s impairment’ (Tremain 2018, 37). Instead, the disabled person also experiences social prejudice and other disadvantages due to the impairment. Thus, according to the social model, biological impairment and social disadvantages are closely related. According to the social model, I am most likely not disabled. Although someone with (more) severe symptoms of MG counts as impaired and might – if experiencing social prejudice and discrimination due to this impairment – count as disabled. For example, under the Americans with Disability Act (ADA) an impairment is understood as a malfunction of a bodily system and counts as a disability when it significantly affects a major life activity, which is determined by what the person’s situation would be like if the disease was not treated or in remission.¹⁵ But as I noted before, MG* does not necessarily affect a major life activity nor does it result in social prejudice or social disadvantages due to any biological impairment. Yet, living with MG* feels significantly different than living an abled bodied life.

A good account of disability – one that accounts for its social dimension as well as others – is necessarily more complex. For example, Elizabeth Barnes argues that in many cases disability is not mere social construction; someone with chronic pain does not stop suffering once ableism is gone from the world.¹⁶ Instead, Barnes proposes an account of disability that ‘allows us to maintain both that disability is just another way of being different […] and that disability can, in and of itself and even in ideal social conditions, be a harm’ (Barnes 2009, 338). Roughly, the idea is that a specific feature such as a physical impairment can indeed make life harder even in the absence of ableism by negatively affecting local quality of life, but, at the same time, the same feature can ‘positively impact other local areas of quality of life, to the extent that overall quality of life can be enhanced by the feature in question’ (Barnes 2009, 340). The important distinction here is one between local quality of life and overall quality of life, where only the latter is indicative of a person’s general well-being. However, overall quality of life cannot be distracted from the sum of local qualities of life due to, for example, the complexity of life in general. Disability can result in harms but only local harms and, hence, is not necessarily a feature that makes a person worse off. Instead, disability is just another way of being different (cf. Barnes 2009, 2016).¹⁷ Let me pause here and take the following insight into account: Local harms can obviously stem from an impairment but they might also be due to other aspects of a person’s life; in my case, MG* results in a loss of certainty regarding my identity as well as anxiety about my future plans. Let us now turn to other social constructionist accounts of disability to see what they have to say about my state of being and these particular aspects.

3. A radical social constructionist model of disability

As we have seen, the social model of disability is based on a relation between disability and impairment, where the former is socially constructed and the latter is biologically innate. Others have proposed more radical social constructionist accounts. Shelley Tremain brings forward an account of disability that is based on social power and draws on Foucault. Here, importantly, disability as well as impairment are socially constructed. She argues that disability is ‘an “apparatus” (dispositif) of relatively recent force relations’ and impairment ‘is an element of this apparatus produced as its naturalized and naturalizing foundation’ (Tremain 2018, 40f.); impairment, thus, becomes ‘both an effect of and a mechanism of the apparatus of disability’ (Tremain 2018, 41). In other words, disability here is different to naturalistic accounts or the social model. Let us have a look at this idea in more detail.

The notion of an apparatus is borrowed from Foucault. According to him, apparatuses are sets of heterogeneous and interdependent ‘discourses, institutions, architectural forms, regulatory decisions, laws, scientific statements, administrative measures, and philosophical, moral, and philanthropic propositions that responds to an “urgent need” in a certain historical moment’ (Tremain 2017, 21). Hence, apparatuses produce historically specific social practices to meet strategic and political ends. Using the insight that social power is not merely prohibitive and repressive but rather productive and constitutive, Tremain writes

as an apparatus, disability is a historically specific aggregate that comprises, constitutes, and is constituted by and through a complex and complicated set of discourses, technologies, identities, and practices that emerge from medical and scientific research, government policies and administrative decisions, academic initiatives, activism, art and literature, mainstream popular culture, and so on. (2018, 42)

According to Tremain, neither disability nor impairment are natural or biological categories. Rather, they are both historically contingent constructs, the elements of which mutually reinforce and co-constitute themselves and, thus, the full apparatus. Disability here is a network of power relations, in which all persons are entangled and occupy specific social positions. Impairment is one part of this network. A different example might help to understand this. According to Kate Manne, the patriarchal order has at least two branches: misogyny and sexism. Misogyny is ‘the “law enforcement” branch of a patriarchal order, which has the overall function of policing and enforcing its governing norms and expectations’, sexism, on the other hand, is ‘the “justificatory” branch […], which consists in ideology that has the overall function of rationalizing and justifying patriarchal social relations’ (Manne 2018, 78f., emphasis in original). Sexism, according to Manne, rationalizes and justifies the patriarchal order by naturalizing sex differences. Impairment is to disability what sexism is to patriarchy. Impairment functions to rationalize and justify the apparatus of disability by naturalizing it; it does so with the help of assumptions, beliefs, theories, research, and other cultural narratives that present disability as deviant from the ableist norm and disabled people as worse-off via a natural theory of impairment as can be seen by the way mainstream philosophy has thought and, unfortunately, still often thinks about disability (cf. Tremain 2017, 2).

Instead of relying upon any natural explanation of impairment that forms the underlying point of reference for disability, Tremain treats the phenomena that constitute disability as contextually specific performative relations of social power (cf. 2017, 23).

Not only are both disability and impairment socially constructed as opposed to the widely accepted social model of disability, Tremain also explicitly shows how disability cannot be a politically neutral or value-neutral object of inquiry because it is necessarily part of the relations of power. And the same holds for impairment as the naturalizing element of disability. Impairment, according to Tremain, was made an object of inquiry only because of its function to justify and rationalize disability as something that makes a person worse off (or, in Tremain’s words, because of its function as a ‘diagnostic style of reasoning’ (2017, 204)).

Where does this leave myself? According to Tremain’s work, I am part of the apparatus of disability. Let me explain. I am not oppressed or marginalized within the historically and culturally specific apparatus of power relations and none of my physical features are interpreted as impairments in the process of naturalizing disability. Nevertheless, as much as everyone, I am part of the apparatus of power relations; at this particular moment, as someone non-disabled. Disability governs all our social practices and, at the same time, is governed by all of our practices. Furthermore, living with MG* could be taken as one of many shifting contexts in which disabilities as diagnosed, thus, counting as a disability itself. We can draw two insightful conclusions from this: The apparatus of disability is not a stable and unchanging construct, rather our perceptions of disability can change depending on the historical contexts and our own position within the apparatus is also subject to change. What we perceive as disability hinges on which impairments we pick out as naturalistic features. The question thus becomes which impairments count as salient when assessing someone’s ontological status; a question that is – although differently – tackled by Elizabeth Barnes. Let us dig further.

4. A modest social constructionist model of disability

Elizabeth Barnes argues that many social constructionist accounts – such as the social model of disability – face the following problem. To provide a fruitful account of disability, they shift the burden of proof to impairment; while they give a useful description of the social conditions from which disabled people suffer, they rely on a natural account of impairment. However, a satisfactory account of impairment is likely to face all the problems that a naturalistic account of disability suffers from. What do which physical features have in common such that we can group them as impairments? (cf. Barnes 2016, 25f.) Furthermore, according to the social model, a world without ableism, is a world without disability. But it is not a world without impairments. Rather, those impairments would not constitute disabilities, would not be disabling. But this is questionable. Clearly, some impairments are still disabling – not because of any social prejudice, but because of the impairment itself. Susan Wendell, for example, remarks that

Social constructionist analyses of disability, in which oppressive institutions and policies, prejudiced attitudes, discrimination, cultural misrepresentation, and other social injustices are seen as the primary causes of disability, can reduce attention to those disabled people whose bodies are highly medicalized because of their suffering, their deteriorating health, or the threat of death. Moreover, some unhealthy disabled people, as well as some healthy people with disabilities, experience physical or psychological burdens that no amount of social justice can eliminate. (2001, 18)

There are physical and psychological burdens brought about by impairments that persist even in the absence of ableism and, hence, in the absence of disability. The social model of disability is not alone in facing these problems, according to Barnes, Tremain’s social constructionist account of impairment raises similar worries. Which physical features do we stigmatize as defects or lacks and, thus, as impairments? Are female sex organs and blindness similarly impairments? (cf. Barnes 2016, 26)

Barnes argues that there are no objective features that all and only disabled bodies share, but that, on the other hand, the social constructionist accounts lose track of the challenges and difficulties that some bodies pose even in a world without ableism: ‘some bodies come with unique challenges and difficulties, regardless of what the social norms are’ (Barnes 2016, 37, my emphasis). In short, while many disadvantages that disabled people face are clearly social in character and imposed by an ideological system of ableism, ‘what your body is like matters to whether you are disabled’ (Barnes 2016, 37, emphasis in original). In light of this, Barnes favors an account that does not reduce disability to what a person’s body is like, but allows that disability is partly about a person’s body.

Barnes’s moderate social constructionist account of disability takes its cue from Charles Mills’ argument about the social reality of race. According to Mills, some objective features are necessary and sufficient for racial classification because they were given cultural importance by society. In other words, it is because of the specific society that some objective features become important and others are not in regard to race. Nevertheless, we can always ask whether a particular individual has the features that society marks as important for racial classification. Similarly with disability, whether someone has a disability is a question of whether the person has the particular objective features; yet, that it is these features and not others that we are looking for has to do with the particular society we are in. But which features count according to Barnes’ theory? Here she passes the buck to social movements. The idea is: A person P counts as physically disabled in a particular context if P has a specific bodily state and that bodily state in the particular context is classified (based on the rules for making judgements about solidarity) by the DRM as part of the physical conditions they are fighting for justice for (Barnes 2016, 46). In other words, ‘[d]isability is all and only the things that the DRM ought to consider as things they are promoting justice for’ (Barnes 2016, 46). Thus, what a person’s body is like matters in so far as the judgements about solidarity that the DRM makes are based on which physical conditions they promote justice for.

Does the DRM promote justice for the hardly visible, minor bodily features that MG* currently causes in my body? On the one hand, the answer is not yet, not until these features become more distinct. If the features were both salient enough to be stigmatized and recognized as symptoms of a chronic condition, the DRM would step in, seeking to expose and reduce stigmatization and demand accommodation for the expected course of the condition. On the other hand, the answer is yes. In so far as they advance justice for more salient features of MG and a pre-symptomatic MG* is one phase of that condition, the DRM does step in.¹⁸ Furthermore, since Barnes’ account is centered around cluster reasoning, it could be argued that MG* is sufficiently close to MG to be counted as a disability. Yet, MG is a difficult case in so far as it is likely that the pre-symptomatic level reaches a level in which more severe features are developing but it is not a necessary conclusion. Some patients with MG stay pre-symptomatic or have only minor and hardly salient features their whole life. Either way it seems that according to Barnes’ theory a person with MG* either is or is not disabled. And, since on her account disability and impairment fall together, a person either is or is not impaired. Yet again, this does not speak to the complicated feeling of being ‘in between’. However, Barnes provides an important insight: We do not need to ‘neatly classify types of physical conditions as disabilities’ (2016, 47) to make solidarity judgements. Rather, often these physical conditions are a matter of degree. Mild asthma, Barnes writes, is no disability, but severe asthma might be. Similarly, mild symptoms of MG are no disability, severe symptoms might be. This thought is plausible also in regard to the current example of the novel Coronavirus and the Covid-19 disease that it causes. While MG* does not place me in the high risk group for a serious progression of the disease, MG with severe symptoms especially when they come with medication do. Nevertheless, even mild symptoms place me at higher risk than someone with no autoimmune illness at all when it comes to Covid-19 and many other diseases. So, we are back where we started: I am not disabled, but somehow I am closer to being disabled than someone without MG or a similar illness. Maybe, the attentive reader might wonder, this is no question of disability or impairment but one of chronic illness. I consider this idea in the next section before I attempt an answer to my personal puzzle and draw some modest conclusions about a theory of disability.

5. Latent impairment

The DRM has had good reasons for questioning and resisting a conflation of disability with illness; any such conflation risks treating disability as merely a medical phenomenon without any consequences from the ways in which we treat each other or the structural social obstacles existing in an ableist world. In fact, thinking of disability in terms of illness and, thus, as individual misfortunes is precisely what the social model aims to refute. Susan Wendell, however, highlights the ways in which disability and illness intersect and in which discussion of illness should not be erased from discussion of disability:

[T]here are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability politics and feminism, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and so-called ‘cure' of disabilities. (Wendell 2001, 19)

She here distinguishes between healthy disabled and unhealthy disabled people, yet acknowledging that many of the particular problems of unhealthy disabled people, due to chronic or recurrent health problems ‘have been or will be problems of people who are now healthy disabled’ (2001, 20). But what does it mean to have a chronic illness? According to Wendell, these are illnesses that do not disappear by themselves or cannot be reliably cured, but will also not kill the patient immediately. Furthermore, any fruitful account of chronic illness has to be patient-centered due to the unreliability of many illnesses into chronic or non-chronic and, we should add, due to the general unreliability of many diagnoses and medical classifications (cf. Wendell 2001, 20). For example, many illnesses come in waves and, thus, behave like recurring acute illnesses ‘with periods of extreme debility and periods of normal (or nearly normal) health’ (Wendell 2001, 20). However, even during the periods of nearly ‘normal’ health, these patients are left with the knowledge that a period of extreme debility is just around the corner. According to this, my specific illness is chronic; it does not disappear by itself, it cannot be cured, and the possibility of deterioration is always lurking behind the next corner. Yet, so far, I have never experienced any serious symptoms; making it questionable whether MG* really counts as a chronic illness. Is this all there is to say? I think not.

In fact, Wendell goes on to describe the ways in which these chronic illnesses pose problems of identity. When we ask questions about how long an illness will last and whether or not a certain impairment is temporary, medicine can often give only insufficient answers. This is difficult for anyone’s identity: Am I disabled or just sick? What exactly is the status of those with chronic illnesses? (cf. Wendell 2001, 21) In fact, this is precisely what Barnes discussed, when she argues that sometimes there is no strict line that we can draw. Severe asthma might be a disability but mild asthma might not be. But what then about those people who alternate between severe and mild stages? Are they sometimes disabled and sometimes not? And what about those, like me, who have a significant risk to move from the mild stage to a severe stage one day (soon)?¹⁹

Let me go back to my illness here. Some people with MG have very severe complications, from being unable to use the muscles in their legs or arms adequately to being unable to swallow or breath without help, and while nowadays many of the symptoms can be treated with either medication or surgery or both, people with severe symptoms have to make changes in their lives. Others have only minor symptoms, like me. Although, even for those with minor symptoms, it is likely that they get worse over time. Nearly fifteen years ago, I found that one of my eyelids was drooping. I spend some months consulting various doctors; who checked my eyes, muscles, nerves, and, finally, my brain but could not find anything that was wrong. And then I gave up. My drooping eyelid never recovered and I hated to look at myself in the mirror, but got used to it after a while and many people never noticed apart from those who knew me well. Five years later, I went to a specialized eye doctor for something completely unrelated and by chance this doctor had spent his last years working in a special MG clinic and upon seeing my drooping eyelid suggested some tests. There was my diagnosis. I was lucky that I was diagnosed at all. So many with only minor symptoms are not.

Now, I have to go to that clinic once a year to check in. Many of the other patients that I meet in the halls are older and have severe symptoms; they are often stunned to see someone as young as me. Many of the health workers are stunned that I still have not developed more symptoms. Many of the clinic’s assistants are stunned that I need an appointment only once a year. So far so good. A visit once a year is hardly life changing. But then comes the advice of the doctors and the constant small incidents in my life that remind me of my illness. I should not stress myself. (Helpful advice when you are an early career scholar with full teaching load and a small child at home!) I should do my exercises regularly. I should avoid major life changes. I should not take any drugs. Or do anything else that could trigger more symptoms, including taking some medical drugs such as aspirin, paracetamol, and other very common cures for headaches and fever and stomachache. This is hard. It is hard to remember, but it is even harder in hospital or doctor situations when you have to remind the practitioners that you are not allowed to take certain drugs and then find on the chart later that they gave them to you anyway. I also spend many hours trying to decide whether I should do a surgery. Seventy percent of patients develop a thymitis; i.e. a mutation or enlargement of the thymus. Ten percent of people with MG have a thymoma, a tumor originating from the epithelial cells of the thymus that may be benign or malignant. So in some cases, surgery is necessary to remove the thymona. Furthermore, a 2016 study showed that some patients benefitted from the removal of the thymus – even if not necessary – and showed fewer symptoms afterwards. In my case, the thymus is significantly bigger than it should be but I have not developed a thymona. Removal might still help my case. Or it might not. This is not the only hard decision. Three years ago my partner and I decided to have a child. But pregnancy can trigger symptoms. And birth can trigger symptoms. And breastfeeding can trigger symptoms. And we needed to find a hospital that was equipped with a neonatal intensive care unit, because not only could birth trigger symptoms in me – including the malfunction of muscles during birth and the possibility of needing immediate intensive care – but also symptoms in the newly born baby including breathing problems due to the hormones the baby received through the umbilical cord. And every time that my muscles feel weaker than usual, I am scared that my life is going to change again. Significantly this time.²⁰

Talking about my disease at length here makes it possible to draw two important distinctions. Having MG* is significantly different to (a) invisible disabilities, and (b) chronic illnesses. Invisible disabilities are disabilities with (severe) symptoms that are invisible to outsiders; for example, depression, chronic pain, posttraumatic stress disorder, severe allergies, seizure disorder, chronic fatigue syndrome, and many more (cf. Davis 2005; Wendell 1996). MG comes with severe and quite visible disabilities, MG* is mostly pre-symptomatic or exhibits only mild symptoms that may or may not be visible to outsiders. Chronic illnesses are conditions that last longer than one year and require ongoing medical attention and/or limit activities of daily living; such as arthritis, multiple sclerosis, fibromyalgia, chronic pain, cancer, or long Covid. Although MG* necessarily lasts longer than one year it does not require medical attention or limits activities of daily living – although MG clearly does. Yet, MG* shares some interesting aspects both with invisible disabilities and chronic illnesses; especially the fact that chronic illnesses make it uncertain what one’s abilities will be like in the future and both chronic illness and many invisible disabilities hinder one’s ability to plan for the future.

Disability activist and feminist Liz Crow has urged us to consider impairment within the disability right movement. She argues that the disability right movement shares many aspects with other civil rights movements, yet it has one significant difference from other movements: ‘There is nothing inherently unpleasant or difficult about other groups’ embodiment: sexuality, sex and skin color are neutral facts. In contrast, impairment means our experiences of our bodies can be unpleasant or difficult’ (Crow 1996, 4). And this implies, that even in a world without disability – that is, a world without ableism – some personal struggles for some people remain that are related to their impairment. For reasons well known, problematic and personal aspects of impairment often remain silenced in the disability right movement; too often are they used in arguments against a social dimension of disability and instead function to make disability into a personal tragedy that should be cured or prevented if possible. But, Crow writes:

[t]his silence prevents us from dealing effectively with the difficult aspects of impairment. Many of us remain frustrated and disheartened by pain, fatigue, depression and chronic illness, including the way they prevent us from realising our potential or railing fully against disability (our experience of exclusion and discrimination); many of us fear for our futures with progressive or additional impairments; we mourn past activities that are no longer possible for us; we are afraid we may die early or that suicide may seem our only option; we desperately seek some effective medical intervention; we feel ambivalent about the possibilities of our children having impairments; and we are motivated to work for the prevention of impairments. Yet our silence about impairment has made many of these things taboo and created a whole new series of constraints on our self-expression. (Crow 1996, 4)

Even if the world changes and ableism becomes a phenomenon of the past, many impairments do not cease to exist nor would they cease to bring pain, suffering, or frustration. Hence, while we should keep working towards building a world in which external disabling barriers and, thus, social disadvantages are a thing of the past, we should at the same time acknowledge that impairment plays a role in many people’s lives. Crow asks us to find a way to include impairment and ‘our subjective experience of our bodies’ (1996, 4) into our social theories and into our struggles against ableism.

In light of these ideas, Crow proposes to add a personal and subjective layer to the objective concept of impairment.²¹ This yields a theory of impairment with three deeply related elements: (1) the objective concept of impairment defined, for example, by the Union of Physically Impaired Against Segregation (UPIAS) and the Disabled People’s International (DPI) as ‘lacking all or part of a limb, of having a defective limb, organism or mechanism of the body’ (UPIAS 1976); (2) ‘the individual interpretation of the subjective experience of impairment in which an individual binds their own meaning to the definition of impairment’ (Crow 1996, 5); and (3) the social context of social exclusion, prejudice, discrimination, and misrepresentation (aka ableism) which turns mere impairments into disabilities. While the first is the basic underlying definition of impairment, the third is the focus of the social model of disability; i.e. mere impairments are turned into disabilities by an ableist society. Let us here focus on Crow’s novel idea expressed in (2). The idea is that people have their own experiences of impairment and attach their own meanings to their experiences such that personal and subjective self-interpretations provide further content to the objective concept of impairment. What is meant by self-interpretation? Crow writes that the ‘personal interpretation incorporates any meaning that impairment holds for an individual (i.e. any effects it has on their activities), the feelings it produces (e.g. pain) and any concerns the individual might have (e.g. how their impairment might progress)’ (Crow 1996, 6). This is not to say that impairment turns necessarily negative; some might regard their impairments as neutral or as positive, but whatever they think about their impairment, this thought becomes a part of their lives. Furthermore, this model does not negate the need to confront ableism and remove disability.

Crow’s model adds the layer of self-interpretation to the social model of disability, which so far has considered only impairment and disability.²² Nevertheless, both self-interpretation and disability are based on impairment. Impairments turn into disabilities due to social disadvantages in ableist societies and self-interpretation is self-interpretation of one’s impairment. In Wendell’s words, it adds a ‘phenomenology of impairment’ (2001, 23); i.e. it adds ‘our experiences of our bodies/minds over time and in variable circumstances, the effects they have on our activities, the feelings they produce, and any concerns about them that impaired individuals might have’ (Wendell 2001, 23). This is not about any bodily or mental experience, but about the specific experiences of their impairment that persons have. Wendell and Crow track an idea here that can explain why my current state does not feel like it did before my diagnosis.

Both, Wendell and Crow, advance the idea that a person’s personal experience and interpretation of their impairment should be taken into account; ‘the meaning that impairment holds for an individual’, ‘the feelings it produces’, the ‘concerns the individual might have’ (Crow 1996, 6). While these experiences are experiences of one’s impairment, we could take this thought a step further. Any bodily or mental changes that we have result in distinctive experiences that give meaning and produce feelings as well as concerns. It is not far fletched to assume that even mild symptoms – especially when they come with a specific diagnosis – can bring drastically new experiences.²³ Consider a bodily change that many if not most people regard as a positive change as long as it was brought about consensually: the changes a pregnant body undergoes. The transformation of the body changes our experiences, our feelings, and our concerns; e.g. we experience more love or more disgust towards our own body, we feel more or less secure, we might be happy or start panicking with every small change that our body undergoes. And some of these feelings and concerns are not merely about the current state our body is in, but about the future states our body will likely develop into. Another example is that of ageing; the transformation of the body in the process of ageing changes our experiences and our concerns about what it means to age. Similar, according to Crow, with the experiences of one’s impairment: Not all of the feelings and concerns are just about the state a body is currently in, rather, ‘many of us fear for our futures with progressive or additional impairments; we mourn past activities that are no longer possible for us; we are afraid we may die early or that suicide may seem our only option’ (Crow 1996, 4) and so on. Fearing one’s future has very much to do with our experience of our current impairment in so far as our fear comes from this particular bodily state but it transcends this current state. Could we say that – even with merely mild symptoms – my illness changes my phenomenological experience in so far as it is because of these symptoms that I start to be concerned and scared about what the future will bring?

Nomy Arpaly adds another piece to this puzzle. According to Arpaly, a medical diagnosis can be positively life changing, it can give us personal reassurance as well as other’s recognition about our bodies and minds; even if this often comes with giving up recognition or being taken serious in regard to other aspects due to the stigma that one’s diagnosis can bring. If a medical diagnosis can be positively life changing, then this implies that it changes our experiences about ourselves, our relation to others, our futures, and so on. Thus, we can say that both, the mild symptoms of my illness as well as the medical diagnosis, affects my experiences, my feelings, and my concerns. While this is nowhere close to being physically impaired and/or being disabled, it sheds some light on the in-between-stage. While I am still abled-bodied, the experiences of my body have changed due to the mild symptoms and the medical diagnosis in a way that a person’s experiences do not change due to the fact that they might be involved in a tragic car accident one day.

But what is the answer to the question posed at the beginning of the paper? What is the in-between-state? As I have shown above, the given medical diagnosis and the mild symptoms of my chronic illness have an impact on my everyday life that is different to physical impairment (or any other impairment) but also different to life without such an illness. Let us try to carve this out terminologically by saying that a person P, such as myself, who has a chronic illness (or some other specific state) that carries a high probability of (physical or other) impairment is latently impaired in so far as a significant part of their mind is taken over or blocked by concerns about their illness and tasks related to this. Similar to physical impairment, impairment here is not necessarily negative. Rather, it is meant to describe the ways in which a person has to plan their illness into their everyday life; for example, by scheduling doctor’s appointments, making specific plans for the future and canceling other plans, explaining the illness to others, and making room for emotional self-care. Furthermore, similar to physical impairment, latent impairment is a matter of degrees and is not a fixed state.²⁴ In fact, many latently impaired people will one day be impaired and there might not be a clear line between latent impairment and impairment proper, hence, we might not be able to point to a particular moment in time in which person P stops being latently impaired and starts being impaired. In other words, I am here not interested in people who have an impairment to a small degree, but rather in people who are not yet experiencing any (severe) symptoms but accurately perceive a high probability that they will have symptoms and impairments in the future and are impacted by this perception. To have a latent impairment is to have some condition such that one has no symptoms or minimal symptoms but, in virtue of the condition, is likely to eventually have enough symptoms to qualify as impaired and, thus likely, disabled proper.²⁵

Two other examples of being latently impaired but unrelated to any medical diagnosis are the following: (a) Most older persons are experiencing some loss of their physical or cognitive capacities; for example the loss of hearing or seeing well. In fact, most older persons have a high probability of being disabled in the near future and many of them have some level of worry about this or engage in preventative tasks such as routine doctor check-ups, exercise, taking vitamins, etc., especially if they already experience a change in their mobile or cognitive functions. While in the case of MG*, patients have a specific idea about the kind of illness and the impairments that come with it, in the case of ageing this is not necessarily the case. Yet, at least when an older person starts experiencing small changes of mobile or cognitive functions, the possible future impairment becomes more concrete. Notably, we can see here that abled bodied experiences, latent impairment, and disability or chronic illness are questions of degree. (b) Another example is that of people facing environmentally mediated risks of impairment. Latent impairment includes people who are aware of having a high probability of developing impairments due to environmental conditions; for example, a miner who is at risk of black lung disease or who is exposed to toxic waste. Again, becoming latently impaired is a question of degrees and might not be fully notable until the person develops some small conditions that make the probability of developing more severe symptoms more likely.

I have started this paper by saying that there is a difference between the possibility of having a car accident and possible impairment and the possibility of impairment due to a chronic illness. And I have then argued that this difference can be explained by taking a phenomenological perspective on impairment; people can be latently impaired such that they have particular experiences due to these specific states of latent impairment. Someone might want to respond by saying that a person’s experiences might actually be changed similarly due to the possibility of having a car accident one day. That is, a person might develop strong fears that they will die in a car accident and, therefore, might stop leaving the house. Such a person would have drastic self-imposed changes in their life and part of their mind is likely to be taken over by this fear and the resulting new organization of their life; e.g. inviting people over instead of seeing them outside, ordering food online, and so on. If someone develops such strong fears that they change their whole life because of this, then this should count as latently impaired and I am willing to bite the bullet and say that someone whose life is taking over by the fear of being impaired in a car accident is in fact latently impaired. This is different to the fleeting example above of being pregnant: Unless the pregnant person is faced with some serious physical conditions due to the pregnancy, the state of their body – not their life though – is likely to turn back to what it was before the pregnancy or at least so a state that is sufficiently close to pre-pregnancy. Different in the case of a latent impairment. While I might learn to live with my illness, it does not disappear. While I might learn to live with my worries and fears, the reasons for these do not disappear.²⁶ Hence, in the first case, a person might be able to leave the state of latent impairment, in the second case, they can only leave that state when they become fully impaired. I have here argued for an account of latent impairment and have been taken my cues from social constructionist theories of disability as well as theories of chronic illness.

Finally, there are physical or embodied experiences that we might want to call ‘transitional experiences’ for they give us insight into some of the experiences described above but do not yet qualify as latent impairment. Take the example of having twins and being in need of a twin-stroller. Suddenly, we find ourselves unable to get on buses or trains or through normal size doors, have a hard time navigating grocery stores or walking on the sidewalk with its many obstacles such as parked cars and bikes, trash bins, other people.²⁷ Literally, our radius and our activities outside of the house shrink to a minimum. Yet, our twins grow older and soon we find our radius to get bigger. The experience of having to navigate a world that is not made for stroller – or wheelchairs for that matter – stays with us and gives us insight into a world and its respective experiences different from ours. However, they do not have the characteristic of undermining our diachronic agency. Similarly, with having the knowledge of a potential illness without (yet) having a diagnosis. Consider the following example: Imagine that someone’s maternal grandmother and both of their sisters developed severe dementia by their late 80s. That person does not know whether they will as well, but they suspects that they might. That suspicion has given rise to certain behaviors and some stress and once they are experiencing some mild signs of memory loss it might actually count as a latent impairment.

6. Concluding words

This paper starts out and concludes with the discussion of my largely pre-symptomatic MG, which is far from being a paradigm disability and yet affects my life in profound ways. Furthermore, its impact is qualitatively different and more pervasive than that from a similar risk of bodily harm from external sources, such as the risk of a traffic accident at the intersection in front of my apartment. Part of the motivation to write this paper was to make sense of my own ontological in-between-state. However, I want to end on a speculative note; namely, that the notion of latent impairment that I have developed as an answer to my own ontological state can contribute in the aim to advance justice for disabled people. The idea is that there are many different ways in which individuals are in such in-between-states of latent impairments – whether due to chronic illnesses or ageing –, where they are treated by society as abled-bodied, but have experiences that give them insights and change their identity beyond the abled-bodied; they are anxious and concerned about the implications of chronic diseases, impairments, and disability. That is, theorizing the in-between state as a state of latent impairment can provide tools for some people to make intelligible their experiences. Furthermore, it addresses the many ways in which some people can become allies to the DRM because of their latent impairments and the personal reflections resulting from it. One can only hope that this has important consequences for wider solidarity with the DRM; the more the non-disabled acknowledge the in-between-states of others, the more allies the DRM hopefully gains. Of course, this is not to say that the DRM needs the help from non-disabled people or that non-disabled people have anything important to contribute (and I include myself here – maybe this paper is nothing more but a way to think through and make sense of my own autobiographical narrative). Yet, the more allies there are to listen, to shout, and to share some of the many exhausting tasks of social justice fights, the better disabled people can concentrate on their own personal well-being and the most important tasks at hand. This might be especially important if we take into account that impairment sometimes comes with fatigue, depression, or anxiety and that the daily struggle against social disadvantage and prejudice is exhausting and often takes more energy than we are willing to give (or have).²⁸

Acknowledgements

I am thankful to the participants of WOGAP for helpful comments and their encouragement, especially Sally Haslanger for the invitation and Samia Hesni for detailed comments. I am also extremely grateful to Jacob Blumenfeld for comments and to two anonymous reviewers for suggestions on an earlier draft as well as the reviewers of this journal.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 I should note that there is a small but significant literature on invisible disabilities, which are less exposed to stigma and whose impact on daily life may be variable and context dependent. Davis (2005), for example, discusses the ways in which invisible disabilities can profoundly impact a person’s quality of life even if they appear ‘normal’ to others; e.g. people who suffer from PTSD, severe depression or chronic pain. However, in many respects, pre-symptomatic MG is not like any of these disabilities for the simple reason that its impact on a person’s life is mostly related to plans or worries about the future but not the present.

2 I am very grateful to an anonymous reviewer for suggesting the term ‘latent’ and for many other insightful comments on an earlier draft.

3 For example, according to the DRM, features that are salient enough to be stigmatized and recognized as a symptom of a chronic condition are covered under DRM’s advocacy. MG* does not include any such salient features. However, the DRM does recognize even MG* not as a distinct condition but as a phase of a chronic illness and, hence, as a disability. Yet, even if this is the case, there is – and rightly should be – a difference between MG* and a disability with salient features. While MG* produces anxiety, uncertainty, and disruption, it does neither imply coping with any symptoms nor with discrimination. I say more about this in what follows. In this paper, I am mostly interested in (chronic) illnesses such as MG* that have no salient features and the way we can make them intelligible in relation to disability – but not necessarily as a disability.

4 An exception to this is the work by Susan Wendell, especially her 1996. Although even here, Wendell is mostly concerned with invisible disabilities; that is, persons with (severe) symptoms that are invisible to outsiders.

5 These conclusions are in no way final and more needs to be said about the topic. However, what more needs to be said is not up to me, but necessarily has to include different epistemic standpoints and experiences – first and foremost, the standpoints of disabled persons. I can only hope that I have made a few points that might contribute to such a discussion.

6 Not all proponents of a ‘normal function’-accounts of health share this argument. For example, Boorse (2014) denies that normal function is valuable in any way but having contributed historically to survival and reproduction, hence, it need not be advantageous in the current environment, let alone be worth more than abnormally functioning bodies.

7 Some have proposed a middle ground between naturalistic and social constructionist accounts; e.g. Shakespeare (2006) argues that disability is limitation due to impairment, where impairment is a failure to function normally because of either physical and intrinsic features or the interaction between impairment and social environment. Similar ideas are brought forward by the revised WHO account.

8 For the purpose of this paper, I will focus on the way in which diagnosis can lead to a latent impairment. For lack of space, I will leave it to another paper to investigate in which way other moments in life can have a similar impact; think of lived experiences such as pregnancy or ageing. However, please note that medical diagnoses are far from unproblematic; in fact, focusing on medical diagnosis could be taken to imply that the state of latent impairment is both embodied and due to innate characteristics of the body; this excludes feelings of latent impairment due to caring responsibilities or other external factors. I will leave it to another paper to investigate the possibility of these possibly counting as latent impairment as well.

9 For a discussion of epistemic injustice and illness see Kidd and Carel (2016).

10 One might want to say that most (if not all) social constructionist accounts of disability are not concerned with a person’s ontological status or with what disability ‘is’, but rather with the impetus of where to focus efforts of change. Yet, part of the task of figuring out where to focus efforts of change is also to understand the underlying social phenomena that are in need of change. In this paper, I am not aiming to provide a theory of disability that includes or excludes MG*, rather I aim at drawing some insights from theories of disability that can help to understand the experience of MG* – and other such experiences – and to draw conclusions from it that could ultimately help in changing the problematic ableist structure of our social world.

11 Instead of speaking of the social model, it would be more accurate to speak of social models as there is a variety of details in these accounts not all of which work together well. Here, I pick out the basic commitments that all of the models take on board.

12 I use the wording ‘disabled person’ instead of ‘person with disability’ because it mirrors other socially constructed phenomena such as gay person or trans* person.

13 This does not mean that the social model locates all disadvantages associated with impairment with those resulting from social stigma and discrimination. Some theorists have argued that the social model is compatible with costs or disadvantages that flow more directly from certain impairments; in these cases, the social model identifies disability as those disadvantages springing from ableist ideology and is silent about the other costs (See, for example, Barnes 2009; Crow 1996 as well as Oliver 2009, 48; Thomas 2004, 29).

14 I should note that this is a simplification of the social model(s) and the analogy to gender (or race for that matter) is problematic in some ways; i.e. many impairments would cause pain and discomfort even if we lived in a non-ableist world and are thus very different to gender or race. For example, Barnes (2016) rejects part of the idea of the social model precisely because it recognizes that ways in which physical features can be sources of frustration and harm inadequately. I say more about this in what follows.

15 See Fauconier v. Clarke (2020) WL 4046025 (4th Cir. July 20, 2020) and Furgess v. Pennsulvania Department of Corrections, 933 F.3d 285 (3rd Cir. 2019).

16 Wendell explicitly looks at the relation between chronic pain and disability, see Wendell (2001). I say more about this in Section 5.

17 Note that in her book The Minority Body (2016), Barnes indicates that her use of the notion of disability is closer to the notion of impairment than disability according to the social model of disability. I will say more about the possibility that not merely disability is socially constructed but also impairment in what follows.

18 None of this is to say that the disability rights movement advocacy would be effective. Anne Cohen, a board member of DREDF, one of the largest and most active disability rights organizations in the U.S., has a more symptomatic case of MG and forcefully exposes the inadequate legal protection for people, especially women and parents, with MG; see, for example, https://disabledparenting.com/ada-turning-26-rights-parent-not-protected/.

19 The relation between chronic illness and disability poses other highly important questions such as when is a chronic illness not a disability? What is the role of self-perceptions of impairment? And whether someone can be wrong about whether their chronic illness is a disability? Unfortunately, for lack of space, I will only draw on the second of these questions in the following and postpone further questions for now.

20 Carel, Kidd, and Pettigrew (2016) as well as Carel and Kidd (2020) argue that we can think about illness as a transformative experience in line with Paul’s framework (2014); illness is epistemically transformative as well as existentially transformative in so far as it teaches us something new we could not have known without becoming ill and this experience will change us. Compare also to Carel (2015) where she discusses in detail ‘the change in one’s attitude towards the future’ when diagnosed with a serious illness (2015, 53).

21 Such a subjective layer is also discussed in many of Havi Carel’s texts on illness and, more precisely breathlessness. She writes that there is a deep gap between objective (medical) knowledge and the subjective experience of physiological dysfunctions; in other words, a gap between the disease and how it is lived by people (See, for example, Carel 2010, 2016, 2018).

22 One might wonder whether Crow’s account seeks to isolate an individual’s self-interpretation with regard to their impairment alone, independently of their disability. If so, it remains questionable if such neat separation is really possible as it seems that the phenomenology of one’s impairment and disability aren’t easily disentangled and that this would have ramifications for self-interpretation of impairment.

23 In fact, it could be argued that illness or disability is a transformative experience both with regard to our epistemic as well as existential experiences; cf. Kidd and Carel (2016).

24 This could be spelled out also for other forms of impairment. Unfortunately, I lack the space and expertise to do so in this paper.

25 The way in which I have set up the account of latent impairment requires that a person is aware of their state of being and likely even self-identifies with it as they worry about what the impairment might bring in the future. Whether such a self-identification or even awareness is necessary is a question for a future paper as are some other questions for which I lack the space here; for example, how much probability of impairment is required, before we deem it a high probability? How significant a part of people’s minds must be taken over or blocked by concerns about their illness for them to count as minimally impaired?

26 Interestingly, Alasdair MacIntyre argues that we are all potentially disabled as we all start out as absolutely dependent on others and are likely to end up that way in the end. Yet, this is different as to what I am trying to argue as most of us are not concerned with these states of dependency throughout their whole life.

27 Thank you to Kerri Woods for this example.

28 I want to acknowledge that there is a flipside to this argument. Bringing more people into or close to the social group of impaired or disabled people can serve to weaken the meaningfulness or significance of that category or identity of being disabled. I have so far not found a solution to this problem and would be grateful to continue this conversation.