Disabled healthcare professionals’ experiences of altruism: identity, professionalism, competence, and disclosure

Abstract

In the health professions, altruism is a foundational value upon which professional privilege is built. This imperative towards self-sacrifice for the benefit of others is a key component of what it means to be professional. This paper explores how altruism operates as a coded mechanism of exclusion and oppression for disabled health professionals. Analysis is based on interviews with fifteen Canadian disabled healthcare professionals in medicine, nursing, occupational therapy, and social work about their experiences of inclusion and exclusion. Themes including the disproportionate sacrifice of time, resources, and income emerged, as did the need to manage political disclosure, often embodying the role of the ‘super-crip’ with patients/clients and colleagues so as to maintain others’ faith in their professional competence and their professional privilege. Further discussion includes questions of how to ‘crip’ altruism as a professional value and the role of altruism as an ableist force within the health professions.

Points of interest

• Altruism, the idea of helping others even at cost to oneself, is an important value for health professionals.

• Disabled health professionals sacrifice more than non-disabled healthcare professionals to meet this obligation.

• Disabled healthcare professionals may work without accommodations, putting in extra time and effort to prove their altruism.

• Disabled healthcare professionals experience that disclosing disability may mean their colleagues will treat them as patients.

Keywords:

• Healthcare
• professions
• altruism
• ableism
• super-crip

Introduction

Altruism concerns helping others, even at considerable cost to oneself. It is, to varying degrees, understood as a normative expectation that enables social cooperation (Bykov 2016). Within the health professions, altruism is positioned as a hallmark characteristic, one of the attributes that sets professions apart from ‘mere jobs’ (Durkheim 2003; Parsons 1991). This entails professionals putting themselves last, always prioritizing the needs and interests of their patients or clients, selflessly carrying responsibility for the lives and wellbeing of others. This (mythical) notion of the selfless superhuman (Jain 2020) constructs the health professional who has and acknowledges their own needs as embodying compromised professionalism, at best. Drawing on interviews with 15 Canadian health professionals who self-identified as disabled, this paper examines how notions of professional altruism work to delegitimize them as professionals, requiring sacrifices of time, energy and resources, plus effort to re-establish or maintain professional identity.

Theories of altruism and its relation to healthcare

While theories concerning altruism permeated pre-modern and modern philosophical and sociological thought, in recent decades it has been relegated more to the domain of psychological and economic inquiry (Ferguson 2018; Wuthnow 1993). Questions about whether true altruism is possible, and the conditions under which it can be invoked emerge in behavioural sciences (Wuthnow 1993), whereas questions regarding how this trait can best be harnessed are typically posed to serve institutional needs (Ferguson 2018).

Contemporary sociology has granted relatively little attention to altruism, and though calls have emerged for its renewed inclusion in on-going discussions, there is little theory beyond the modern era to lend support (Bykov 2016; Chamberlain 2013; Wuthnow 1993). In Western contexts, the concept of altruism dates back to Ancient Greece and plays a key role in early Christian thought. When the human will was understood to be driven towards the desires of the flesh, or contrastingly, the divine will of God, altruism was understood to align with that which was sublime: a higher state of existence, transformation beyond the body, impartiality, and truth in thought and action (Wuthnow 1993). In the contemporary Western world, where there have been sustained arguments about healthcare replacing religion as the institution governing people’s bodies and actions (Conrad 1992; Turner 1984, 1987), the transmutation of this idea and its constructed value to the domain of healthcare emerges. In the work of Talcott Parsons (1939, 1991), William Goode (1957) and others, a key characteristic of what constituted a profession was that practitioners had a ‘service orientation’ centered on serving the public good, always putting the interests of a client or patient ahead of their own. Medicine was considered the exemplar of a profession in virtually all sociology of the professions in this era (e.g. Freidson 1970).

Critiques of the very idea of altruism typically follow the lines of the argument put forth by Neitzsche, that acts of altruism are, in fact, self-serving (Nietzsche 1998), designed to constitute the actor as morally good. While the existence of altruism in its truest form is undoubtedly a question of interest to some scholars, here the idea put forth by Robert Wuthnow (1993) is taken up: ‘So long as people think they are acting altruistically, and so long as the culture pre-supposes the possibility of selfless behaviour, that possibility is an empirical reality to be taken into account by sociological theories’ (p. 352). Wuthnow emphasizes that altruism as a concept serves a social purpose, defining a moral ground wherein behavior is seen as “rare and pure, exemplifying the best in human nature” (p. 355), thus “stand[ing] over and against the norms governing ordinary behavior” (p. 355). The notion of altruism, especially as embedded in the defining characteristics of the health professions, performs and accomplishes cultural work. As such, it is important to ask how it operates in relation to the experience of disabled healthcare providers.

Altruism and defining the professional

Emile Durkheim’s (2003) functionalist perspective is a cornerstone when exploring altruism in the context of professionalization (Chamberlain 2013; Bykov 2016). His argument is that altruism is needed to produce social solidarity in an industrialized world plagued by a potential lack of moral and social order. Professions, as integrated social communities, forge social solidarity, inculcating the need and desire to act not only for oneself, but for the collective. Indeed, other functionalists such as Parsons (1939; 1991) and Barber (1963) also include the criteria of acting in the interest of others, rather than oneself, as a foundational component of achieving the status of a professional group. As Chamberlain (2013) argues, medicine’s claim to be an altruistic discipline using science to benefit the health of humankind is a key feature that allows for its professional status and self-regulation as a profession. Professional autonomy – self-governance – is predicated upon this notion of service orientation, or commitment to the public good.

With the emergence of the post-functionalist era, questions surrounding the professions shifted from questioning what their defining characteristics were, to concerns regarding the legitimacy of professional autonomy and privilege (Freidson 1970), the development of professional knowledge (Larson 1977), and how professionals are socialized into their professions (Becker 1961). With this shift came a focus on professional self-interest, rather than a focus on professional altruism (Chamberlain 2013). Yet, altruism is still touted as a key component of moral and ethical practice among healthcare professionals, stemming beyond the duty to ‘do no harm’, as the Hippocratic Oath suggests in medicine, to claims of promoting justice, equity, and putting others interests above one’s own.

In the Canadian context, physicians, occupational therapists, nurses and social workers have the value of altruism written into their core competencies and professional obligations. The national competency framework for physicians names professionalism as a core competency, defining it as ‘[being] dedicated to the health and care of others’ (Frank et al. 2015, 26). Physician’s competencies reflects contemporary society’s expectations of physicians, which include clinical competence, a commitment to ongoing professional development, promotion of the public good, adherence to ethical standards, and values such as integrity, honesty, altruism, humility, respect for diversity, and transparency with respect to potential conflicts of interest. (p. 26 emphasis added)In medicine, since the early 1980s, this professional commitment has largely been spoken of as medicine’s ‘social contract’ (Cruess and Cruess 2004, 2008). Other health professions have established similar commitments in their professional competencies. Occupational therapists in Canada are ‘expected to put the [client’s] interest above their own’ (Canadian Association of Occupational Therapists (CAOT) 2013, 1), noting that ‘one cannot legislate altruism, commitment, or independent professional judgment; they must come from within individual [occupational therapists]’ (p. 2). The American Occupational Therapy Association states even more explicitly that altruism is one of the seven core values of the profession, defining it as ‘the individual’s ability to place the needs of others before their own’ (AOTA 2010, S17). The Canadian Nurses Association (2015) names Service to the Public as a core competency expected of practitioners (p. 11), stating that ‘the primary purpose of the RN is to practise in the best interest of the public and to protect the public from harm’ (p. 29). The Canadian Council of Registered Nurse Regulators names as an overarching principle that, ‘The client is the central focus of RN practice’ (2018). The Canadian Association of Social Workers (2020) Code of Ethics and Scope of Practice includes, ‘The delivery of services and interventions that support community development and enrich individual, family, and collective well-being.’ Service to Humanity is one of five guiding principles, including, ‘Social workers place the needs of others above self-interest when acting in a professional capacity’ (p. 6). In one Australian study, nurses and social workers argued that ‘selfless caring,’ particularly caring work in the context of typically poor pay, defined their professions as altruistic and therefore deserving respect (Huppatz 2010). Not surprisingly, professed altruism and the desire to help others emerge as key reasons students enter the health professions (Miers, Rickaby, and Pollard 2007).

Understanding altruism and power

A notable critique of unreflexively tethering altruism to professionalism is the lack of acknowledgement of how professionals (as social communities, to use Durkheim’s conceptualization) use their cognitive and altruistic resources to exercise power (Chamberlain 2013). While the nature of altruism may vary over time and place, what is shared commonly among diverse conceptualizations of altruism is its relationship with power, whether connection with the power of God (Wuthnow 1993), professional status (Chamberlain 2013), personal gain (Nietzsche 1998), moral order (Bykov 2016), or legitimating privilege (Freidson 1970).

Where these critiques have emerged in relation to healthcare is in the charity model of disability. Indeed, as Wuthnow (1993) writes, the words ‘charity’ and ‘altruism’ have the same root and may be understood synonymously. Using this model as a foundation from which to perform critical analysis leads to questions that include: how acting charitably towards those constructed as disadvantaged elevates the status of those who are deemed charitable, how individuals receiving charity are problematized or pathologized while the economic system that disadvantages them remains unquestioned (Withers 2012). Physiotherapist Stephanie Nixon (2019) has argued that within the charity model, people with privilege are cast as experts, who generously use their expertise to ‘rescue’ the needy, a framing that maintains structured power differences. Critically applying this model to disability invokes themes including how the construction of the ‘super-crip’ and its infantilized antithesis form the binary within which those at a disadvantage come to view themselves, how the ‘normal order’ is reproduced through discourses of power, and how certain characteristics become problematized while others become normalized. Indeed, to be critical of how altruism functions in the professional context when this value is embedded in its foundation requires a post-structural approach to explore how power is asserted at both the micro and macro levels.

While the ‘patient’, ‘client’, or ‘service user’ is often the one seen at the mercy of the generous altruist – the ‘doctor’, ‘charity donor’, ‘self-sacrificing healthcare provider’ – these roles are not always enacted by different bodies; this binary perspective neglects key insights that can be illuminated through those in one body inhabiting seemingly antithetical roles, disabled healthcare professionals. Thus, this paper seeks to explore how power flows through the professional value of altruism to maintain normalized ableist attitudes in the professions. Specifically, it seeks to explore how altruism operates as a coded mechanism of exclusion and oppression for disabled providers within the health professions.

Research process

This paper draws on a subset of data from two larger studies examining the experiences of health professionals (physicians, nurses, occupational therapists, and social workers) who self-identify as disabled, working-class origin, racialized, Indigenous, ethnic minority, and/or minority sexual/gender identity in Canada. The team composition enhances the quality of the analysis as among the members of the larger team; we represent all social identity categories and professional groups included in the study, except for physicians. We do include two scholars with expertise in medical education. Thus, the work is informed by lived experience.

Process

Grounded in critical phenomenology, in-depth interviews were conducted with 49 participants from across Canada, recruited through snowball sampling starting from team members’ professional networks. Participants had to have five years in practice in Canada, and self-identify with one or more of the marginalized groups we were recruiting. We did not ask people to specify disabilities, they simply had to say that was one of the groups with whom they self-identified. Interviews explored belonging and marginality, the toll of oppression, as well as coping and resistance. With consent, interviews were conducted by three researchers, all of whom identify with the study population groups. Interviews were conducted by telephone or in person, were recorded and transcribed verbatim, then coded using ATLAS.ti software. Iterative analysis moved between compiling coded data (quotations) and re-reading full transcripts, focusing on codes such as disclosure, habitus, and professional and unprofessional behaviour. Weekly meetings of the research assistants and PI throughout the study, plus occasional meetings with the whole team, enabled reflexive analysis. We were able to challenge and build on each others’ interpretations as they emerged. We did not employ member-checking, as previous experience has shown professionals rarely respond to preliminary analyses circulated.

Repeated analysis and team discussions identified the conceptual framework above as best-suited to the data, providing an overarching thematic structure. Quotations were organized and reorganized as sub-themes emerged, then ‘cleaned’ by removing false starts and filler words like ‘um’ and ‘ah’. The study was approved by three university research ethics boards.

Participants

For this analysis, 15 of the 49 professionals were included, those who self-identified as disabled. While we report demographics (Table 1), we deliberately keep details vague to reduce identifiability. Self-identified disabilities included sensory, neurological, musculoskeletal, and mental health. We chose not to use pseudonyms to avoid the violation of mis-naming, and reduce the likelihood of ‘tracking’ individuals through the paper, increasing identifiability.

Table 1. Participant demographics.

ID Code	Profession	Geographical Area	Approximate Years in Practice
N1	Nursing	Rural, Eastern Canada	>30
N2	Nursing	Urban, Western Canada	10 to 20
N3	Nursing	Urban, Central Canada	10 to 20
N4	Nursing	Urban, Eastern Canada	5 to 9
OT1	Occupational Therapy	Urban/Rural Eastern Canada	10 to 20
OT2	Occupational Therapy	Urban, Eastern Canada	10 to 20
OT3	Occupational Therapy	Rural, Eastern Canada	10 to 20
OT4	Occupational Therapy	Urban, Central Canada	10 to 20
OT5	Occupational Therapy	Urban, Western Canada	10 to 20
P1	Medicine	Urban, Eastern Canada	20 to 30
P2	Medicine	Urban, Eastern Canada	10 to 20
P3	Medicine	Urban, Western Canada	5 to 9
P4	Medicine	Urban, Western Canada	5 to 9
SW1	Social Work	Urban, Central Canada	5 to 9
SW2	Social Work	Urban, Central Canada	5 to 9

The study is limited by having a relatively small sample that is also heterogenous, including participants with a wide range of disability experiences. At the same time, of course, not relying on diagnostic categories of disability helps to shift the focus to disabling social conditions. Recruitment was discontinued when health professionals became overwhelmed with the COVID-19 pandemic. Nonetheless saturation was deemed to have been reached on most themes.

Results

Demographics

The 15 included participants were from the medical, occupational therapy, nursing, and social work professions and reported a variety of different disabilities, including visible and invisible disabilities. Some participants’ disabilities emerged after entry to their professions, others prior to entry. Participants worked and resided in a variety of geographical zones of Canada, including urban and rural areas of Eastern, Central, and Western provinces, with many describing having worked in multiple locations and areas of their respective practice fields. They also reported belonging to racialized, working class, and LGBTQ + identity categories. Specific demographic data by participant are not reported to maintain participant anonymity. We move between identity-first and person-first language deliberately, in recognition of ongoing debates within disability communities (e.g. Dunn and Andrews 2015).

Overview of results and analysis

Disabled health professionals reported sacrificing time, energy, income, and aspects of their personal identity to help maintain their professional identity and others’ perceptions of their competence. Participants described covering their disability by rendering invisible the extra sacrifices required of them to maintain their professional role and disclosing only enough to avoid perceptions of incompetence. By keeping secret the extra sacrifices they are required to make, disabled healthcare professionals ensured the illusion of the able-bodyminded super-human professional granted to them by their professional status overshadowed the stigma associated with disability.

Sacrificing time, energy, and leisure to meet professional expectations

Participants frequently mentioned the extra work they were required to complete to display competence, appear able-bodied, and complete tasks designed for abled professionals. This extra work often required extra time and energy, which detracted from their ability to participate in other valued aspects of their life. For example, one participant compared her work realities to running a marathon wearing weights:

It’s almost like running in a marathon, and having people attach weights to your legs. You can run your absolute hardest, stick it out, but you’re always lagging, just a tiny– like you’re never really going to win the race. You can come close, but you have to put so much more energy just to run beyond the weight of the weights. But you can’t, like, go too too high up, because that extra energy is needed, and you don’t have it. You pull, as much as you can, but otherwise, you’re always sort of lagging, just a bit. So it’s like the leadership that I’d love to do is a bit affected, because of those weights and those weights were put on all those years ago, and they’re kind of still there. And I can’t obviously, work as fast as everyone (HP40).

Because of the extra energy and time required to complete tasks, additional valued work activities including leadership roles, teaching, administration, and seeing additional patients/clients often had to be sacrificed to complete tasks with the limited resources available. In the professional context, these sacrifices also emerged as negatively affecting income, by paying out-of-pocket for assistants to help with work tasks, working additional unpaid hours, and losing the potential for higher-status higher-remunerated positions.

Participants perceived taking on the extra work needed to complete work-related tasks as ‘voluntary’, since it allowed them to keep secret the challenges they experience completing tasks designed with certain abilities assumed. Many participants reported experiencing overt and vicarious ableism when they or others disclosed challenges meeting able-bodied norms, thus participants most often chose not to disclose. They opted to sacrifice the potential for assistance or accommodations, rather than sacrifice the perception of competence they could enjoy when read by others as able-bodied. As one participant described, after experiencing overt ableism during professional school, disability disclosure became something to avoid at all costs:

It made me determined to not share that information with employers or people in positions of authority over me, or to ask for anything, even though there may be accommodations, or there may be times when flexibility for me would be advantageous. I basically just kept it to myself. And worked my way through it. (HP41)

As professional competence was framed as at odds with the extra work required to meet able-bodied norms, the extra work and subsequent sacrifice of additional valued activities was chosen over sacrificing perceived professional competence. As another participant described it: ‘I don’t have a lot of room or time left for anything else’ (HP40). The professional value of altruism is extended here to include increased sacrifice from disabled healthcare providers, meeting patient/client needs selflessly, while literally subsuming or rendering invisible personal needs. Accomplishing this professional normative expectation simultaneously functions to maintain the perception of able-bodiedness/able-mindedness central to the construct of professional superhuman.

Refusing to sacrifice professional competence through disclosure

In practice, refusing to sacrifice perceived professional competence by disclosing disability often translated into extra effort required to hide or cover symptoms, and sacrificing support for personal needs. Many participants described the extra effort that went into hiding symptoms or needs from both patients/clients and colleagues. They mentioned selecting workplaces, adapting their schedules, excusing themselves from meetings, maintaining memory aids, and so on: ‘You know, I find ways to make it work, sort of, for myself’ (HP26). Hiding or minimizing symptoms was often done out of fear of being judged, particularly being judged as unprofessional, if symptoms were to become visible: ‘That’s not something that I would ever sort of formally or publicly identify with, just because it’s not safe to do so within medicine’ (HP48).

One participant described becoming adept at hiding symptoms (‘I hid it really well. I faked it really well’), but also at finding moments to ‘release’ symptoms:

The invisible hours, the hiding of the symptoms, which is really hard to do, but you get to become a master at it. If you’re sitting with a client and you’re face to face in their home, and you’re exhausted, you know if they turn to show you something out the window, then you can sneak your yawn in (HP40)

These strategies were needed in order to maintain others’ perceptions of their competence, because having needs was framed as in conflict with professional identity:

If most of my identity is more professional, as far as an OT, then I have to suck it up a little and fake it a little bit more. Just so that, for the sake of clients, that they have, confidence that their OT knows what she’s doing. (HP40)

For some, disability was seen to be so at odds with their professional status that disclosure was perceived as a total threat to professional competence:

The idea of a physician and a healer as being sort of, calm, stable, steady person, you know, being like, ‘And by the way, my brain is different and kind of broken, if I don’t manage it’ kind of destroys that illusion of the rational Other. (HP47)

Healthcare professionals expressed that they are ‘supposed to be this healthy person’ (HP2) and are required to sacrifice whatever is needed to maintain the perception that they are ‘this idealized person, with this perfect life’ (HP2). That perception of selfless superhuman is granted to them along with their professional status. Disability disclosure compromises that perception, and thus potentially the perception of professional competence.

Using selective disclosure to elevate professional status

In contrast, however, some professionals used limited or partial disclosure in order to elevate perceptions of their professional competence. Participants described how, when working with clients experiencing similar challenges, drawing on their experience of navigating the able-bodied world as a disabled person to inform their recommendations to clients helped elevate their professional credibility. This was a technique used both with clients and other professionals. For example, one occupational therapist drew on experience when working with clients facing similar challenges:

To be able to work with people and give them, you know, examples of things and strategies and tools I’ve used in my own life, like, I just have this huge pool of information that a typical OT wouldn’t have, right? So, that’s been a really huge asset, I think, in certain situations. (HP25)

In these cases, personal experience of disability is employed as an asset, used to frame the professional as someone who can understand the experience of the patient/client, has overcome adversity, and been able to attain typical (able-bodied) professional competence. Similarly, disclosure to colleagues was mainly used to educate, to help other health professionals see what surmounting disability to lead a productive, professional life looked like:

It might be a good idea, especially at least at the hospital, where people should understand, and relate and so forth, to sort of say ‘Hey, I have got this. And look at me. I’m working … I’m managing.’ … So, very, very slowly, I would start to disclose to maybe one or two people at the time, who I was really friendly with. (HP2)

While using disability as an asset when working with clients and advocating for change, professionals still felt they needed to hide the aspects of their condition that may continue to pose physical, cognitive, or emotional challenges, ‘There’s a lot of trying to just gain comfort with myself, at this point still. Like, doing the stuff that I know is going to benefit everybody on the large scale, but then stuff for making myself visible and comfortable, ah, not so much. (laugh)’ (HP47). While their wisdom developed from lived experience was allowed visibility, indicators of disability such as pain, fatigue, inattention, different movement patterns, were kept hidden. In these cases, disabled professionals were required to sacrifice the parts of their identity and validation of their lived experience that are perceived to conflict with professional expertise, in favour of elevating the components that increased how patients or clients perceive their competence. Such selective disclosure functions to increase the value of professional status and decrease the negative impact of disability stigma on their social identities. At the same time it solidifies the notion of professional and disabled as incommensurable, implying competent professionals must have surmounted disability.

The relationship between sacrifice, altruism, and perceived professionalism

Because of the professional value placed on altruism, it is seen as morally good for disabled healthcare providers to sacrifice themselves in order to enact professionalism. Professional expectations and values postulate the selfless superhuman, able to sacrifice themselves to the profession and to their patients/clients: ‘Even if I’m [role] modelling and all of that stuff, like, we’re here about them, not me’ (HP2). So personal sacrifice is normalized, yet the extent and types of sacrifices made by disabled health professionals must be kept secret because if other people knew how difficult it was for them to fit with ableist ideals, and how much they were sacrificing to do so, it would disrupt the illusion of the perfect, ideal, healthy self behind the expected sacrifices.

The professional value of altruism helps to construct the healthcare professional as more than human, with enough self leftover to sacrifice to others. While this value underpins the actions and choices of professionals of all abilities, those with disabilities are expected to bear disproportionate sacrifices in comparison to their able-bodied counterparts in order to be perceived as professional. These sacrifices include personal time, income, and leisure, denying bodily needs, minimizing the impact of cognitive or emotional needs, and withholding and navigating disclosure around parts of their identities. Paradoxically, revealing the sacrifice required by disabled healthcare providers to display professionalism threatens to undermine their professional status by calling into question their professionalism and therefore their right to the privileges that accompany their professional status – including the privilege of being in the power position in charity/altruistic relationships. As such, professionals cover disability and its subsequent threat to their professional status by rendering invisible the extra sacrifices required of them to maintain their professional role and disclosing only enough about their disabilities to decrease perceptions of incompetence.

There’s still so much hiding. Sitting there, exhausted, after you’ve driven two hours to see someone, who desperately needs a community support, and you’re pretty much falling asleep by the time you’ve arrived, and all your day’s energy is spent just getting there. And then, you have to find a way to perk up and be the very best professional you can be, for their sake, without them knowing that you’re exhausted… I wouldn’t dare mention [any limitations]. I just take it. And then, I feel like afterwards, I pay. And I think it’s the right thing to do, but, difficult sometimes. (HP40)

By keeping secret the extra sacrifices they are required to make, disabled healthcare professionals allow the illusion of able-bodiedness and superhuman prowess granted to them by their professional status to overshadow the stigma associated with disability. Again, at the same time this maintains the notion that professional competence is incompatible with disability.

Discussion

The hidden agenda of altruism?

In its Christian form, altruism involves denying the desires of the flesh to align one’s actions with the will of God to perform acts for the good of humanity (Wuthnow 1993). While current healthcare professions may tout more secularized views, the origins, practices, and epistemologies of many health professions are grounded in religious traditions and affiliations (Grenier 2020). The perception of altruism in the health professions still involves denying the desires of the flesh, which for disabled healthcare providers often means the needs of their disabled bodies/minds, in favour of increasing case loads and productivity. Thus, the valorization of altruism has disproportionately negative consequences for disabled healthcare professionals, who are required to incur more personal sacrifice than their able-bodied colleagues, including working extra hours, paying out of pocket for support, disguising embodied characteristics of their lived experience, and navigating disclosures strategically.

Furthermore, the association between professionalism and altruism means that choosing not to make such sacrifices threatens professional status and accompanying professional privilege. Participants repeatedly discussed how disclosing their needs to others – colleagues, superiors, or patients – would undermine their credibility as a professional, and for some, mean the end of their career. As such, disabled healthcare professionals are acutely aware of the self-serving nature of altruism and its ability to maintain and reinforce their privileged position as professionals. As Wuthnow (1993) describes, ‘When benevolence of morality of any kind becomes a mere appendage to the atomistic pursuit of the individual’s own needs and gratifications, then it becomes, as Nietzsche demonstrates, a negative obligation performed out of duty, or, if not performed, a source of guilt and self-loathing’ (Wuthnow 1993, p.352). Thus, for disabled healthcare professionals, the altruistic imperative creates a catch-22, a double-bind scenario where either option results in negative consequences.

Crucially important here is considering the needs of disabled bodies as valid and essential; for some, denying these needs results in significant personal danger and even risk of death. As such, disabled healthcare professionals incur greater burden of risk by being implored towards altruism, and for some, this risk is greater than it is worth. Participants in this study alluded to their inability to keep up with the increasing demands being placed on them and the exponential effect this had on the amount of sacrifice required of them in terms of their health, social life, and family life; some anticipated a premature end to their professional careers. In this way, the professional value of altruism functions to exclude disabled professionals from practicing by requiring disproportionate levels of self-sacrifice. The result is covert obstruction that uses both the embodiment of professional values and explicit moral codes to withhold full professional status from disabled healthcare professionals, particularly if they fail to hide the full effects of disability, or choose not to.

Navigating power: the tug-of-war and acts of resistance

While altruism may function to impose an ableist norm among health professionals, it is important to also consider how disabled professionals assert their agency to navigate within these oppressive expectations. With the magnitude of sacrifice required of disabled healthcare professionals, it is reasonable to question why they choose to accept these sacrifices rather than advocating for and using accommodations that might mitigate this requirement. Indeed, this is the very purpose of laws requiring disability accommodations in the workplace (Withers 2012). Why, then, might disabled health professionals willingly choose such a sacrifice when there is another option?

Here, it is important to consider how the constructions of disability, charity, and altruism interact to again place disabled healthcare professionals in a double-bind, a consistent feature of oppression (Frye 1983). The majority of participants described how their disability was invisible to others at first glance, meaning their status as healthcare professional along with their visual presentation allowed them to pass as able-bodied in many circumstances. In circumstances where this was not possible, participants described being caught in bodies that clashed with the expected performance of professional competence and that required justification by disclosing disability to ensure the continuity of their ability to access professional privileges, or in which their unruly bodies required taming to meet professional expectations. Those who chose the latter could defend their choice using the socially acceptable altruism narrative which grounds their profession and cast themselves as the virtuous healthcare provider sacrificing themselves for their patients/clients. Those who chose the former instead experienced disrupted clinical narratives in which their competence was questioned, their patients/clients felt sorry for them, and they felt like they were being treated as a charity case, which conflicted with both their personal and professional identity. This was especially true when accommodations and alternative arrangements are framed as charity rather than equity.

Our results echo those of others who have found disabled healthcare professionals and students risk tainted identities if they disclose, preferring to forego needed accommodations to maintain the portrayal of professional capability (Easterbrook et al. 2015; Jain 2020). Those studies also found that, in the health professions, people may disclose only what they must disclose, after doing everything possible to self-manage. Even then they risk appearing needy, costly, incapable or disruptive. Jain (2020) calls the types of strategic disclosure we also found in our study ‘political disclosure’, employing disclosure to disrupt ableist assumptions, challenge the status quo, and resist disability stigma. In particular, disclosure may resist the equation of disability with inability, which renders incommensurable disability and professional competence. At the same time, the strategic use of disclosure – only when all else fails and disclosure is necessary – upholds the illusion of the superhuman, super-capable health professional, often at great personal cost. Foregoing accommodations, minimizing needs, pulling off normative performances at great (invisible) cost in terms of time, energy, and pain maintains the imperative of capability, a framework wherein disability accommodations or alternatives become a matter of charity, generosity.

As Withers (2012) describes, when the charity model is used to explain disability, disabled people are limited to two options by which their life is interpreted: either they are the object of pity, or a ‘super-crip’, where they are seen as valid and valuable when orienting themselves towards serving the normal order. As such, when disabled healthcare providers disclose their needs, they are cast as the object of pity. When they maintain the normalized and valued altruism narrative embedded in the construction of health professional by denying their needs and accepting the resulting sacrifice, they are cast as a super-crip, a valid and valued human being. Further, valuing the super-crip narrative is problematic because it leaves unquestioned taken-for-granted oppressive norms which many healthcare providers are simultaneously actively working to challenge, and which contradict their professional values. Healthcare providers describe how buying in to the supercrip narrative is what allows them to maintain their professional status which grants them access to being able to help others, and yet, it can be framed as putting themselves and their needs ahead of their work by not personally challenging oppressive norms, resulting in guilt and shame (Jain 2020).

The most common allusion to the super-crip narrative is in disabled healthcare professionals use of political disclosure with patients, whereby they disclose just enough information to present themselves as an expert with knowledge of the lived experience of disability, but not enough to suggest potential incompetence. Even going so far as to describe themselves as ‘super-heroes’, disabled healthcare providers take pride in the breadth of knowledge they can use to assist their patients or clients. In these cases, healthcare providers describe how only a fraction of their professional status is sacrificed – the piece that casts them as an unrelatable, post-human ‘other’ to the client – and can lead to greater connection, trust, and sense of commonality between the client and themselves. Participants described how this can be very beneficial to the client, but also create a personal sense of belonging and self-worth for the healthcare provider, which they may otherwise be denied. The mutual benefit accrued may challenge a traditional ableist understanding of altruism and make space for this concept to be cripped in how it is used, evoked, and challenged, by disabled healthcare providers in practice.

Limitations and additional questions

While the diversity of participants and breadth of professions included in this study undoubtedly strengthens the described interpretation of altruism’s oppressing power within health professions as a whole, there are undoubtedly unique aspects of each profession which may call for a more nuanced approach. For example, some professions have a strong commitment to social justice, while others are more oriented towards a medical approach. While many health professions originated and are grounded in similar ethical frameworks, whether and how altruism is enacted differently in professions with different orientations is worth exploring.

Additionally, participants in this study were not only from a variety of professions, but also had experience in different practice areas and settings within their profession. Again, the construction and system of healthcare in Canada may have allowed similarities to permeate experiences, it is likely that the unique culture and team composition of different practice settings also influences experiences. For example, it is reasonable to assume that the value of altruism may be held and enacted differently on a multidisciplinary team where what is common among team members is their membership in a health profession, in comparison to on a hospital floor where one is working mainly with other professionals of the same discipline. Further study is needed to gain a more nuanced understanding of these questions.

Conclusion

Among healthcare professionals, altruism is a shared value that creates the foundation upon which professional privilege is built. The imperative towards self-sacrifice for the benefit of others is a key component of what it means to be professional. It also functions to disproportionately burden disabled healthcare professionals, requiring them to ignore their embodied needs and sacrifice more time, income, energy, and choice than their able-bodied peers. The magnitude of the sacrifice required serves not only to exclude disabled people from the healthcare professions, but also tangles them in a series of double-binds where any action can be viewed as not fulfilling their professional capability imperative (Jain 2020), resulting in guilt, self-loathing, and feelings of not belonging. However, disabled healthcare professionals also describe how at times, they are able to harness this sacrifice to fuse a stronger connection with and provide better service to clients and patients who have similar needs and experiences. The self-and-other serving orientation of these actions may crip our understanding of altruism in healthcare and open space for different ways of understanding how professionalism is enacted by disabled healthcare providers.

Acknowledgements

We are grateful to the participants for sharing their expertise, and to the rest of the research team: Michelle Owen, Josephine Etowa, Debbie Martin, Anna MacLeod, Stephanie Bizzeth, Tara Pride, and Doris Kakuru.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Funding was provided by the Canadian Institutes of Health Research Grant # PJT-159664.