In so many ways, disabled people are damned-if-we-do, damned-if-we-don’t. Survival, or existence, is damnation by a deeply ableist society.
The Disability Double-bind — [janet gunter]
This Kafkaesque, absurd story about a blind woman denied benefits because her mother helped her get to an in-person assessment on public transport seems to illustrate the point quite well. “Well if you can get to this assessment…” was the logic of the private company that denied her benefits.
The disability benefits system is by design hostile to disabled people, and specifically hostile to disabled people who are unable to work, mostly because society has been designed to exclude them. These folks get trapped in the cruelest double-bind.
I argue that in neoliberal societies, two distinct and largely incompatible pathways to social legitimacy depend, respectively, on (a) a version of the classical sick role and (b) a more recently constituted able-disabled role. Of these, the first pathway has mainly been explored and critiqued in the sociology of health and illness, while the second features mainly in disability studies. However, both pathways can be understood (1) as ableist mechanisms for maintaining adherence to values of productivity and by (2) imposing on disabled people an unequal burden of invisible work—a key feature of ableism, driving inequality both within the group of disabled people and for the group as a whole.
Both the classical sick role, predicated on acute, temporary illness followed by a return to work and the able-disabled role, framed by the ideal of full participation and productivity regardless of embodied disadvantage, depend on and reinforce universalistic achievement values while eliding the socioeconomic conditions that systematically exclude disabled people. For the sick role as well as for the able-disabled role, performative effort is required in order to live up to the normative constraints of these universalistic achievement values. For the sick role, health-seeking behaviour must be balanced against proper illness behaviour, that is, a demonstration that the illness is sufficiently serious to merit privileges of exemption. The same applies to disability privileges, that is, rights-based access to compensatory accommodation. In each case, the role becomes a balancing act, and a double bind is created, one that can be framed in terms of unacknowledged or invisible work.
The double bind of social legitimacy: On disability, the sick role, and invisible work – Grue – 2024 – Sociology of Health & Illness – Wiley Online Library
To explore the ubiquity of invisible work is therefore an analytical strategy for clarifying the Catch-22 that structures the predicament of disability and long-term illness under ableist conditions. On the one hand, disabled people and people who are ill may face a cultural expectation of passivity, withdrawal and debility. On the other, they may face expectations of proper health behaviour and optimisation for productivity, of being warriors and of being totems of inclusion. The resultant double bind creates a burden for individuals that can only be shifted onto institutions if it is first made visible and anatomised.
The ‘Able-Disabled Role’
Both the medical model and personal tragedy theory were constructs of disability studies, developed as objects of critique. Part of the point for disability activists, as for many academics working in disability studies, has been to show that other ‘disability roles’ are possible and that they are compatible with full societal participation. These efforts have met with considerable success—as only one example, disabled people are routinely included among the minority groups whose inclusion in various societal arenas constitute ‘diversity’. Representations of disabled people and public understanding of what it is to be disabled has changed dramatically in many countries, and stigma has lessened considerably. Arguably, however, the new, socially legitimised disabled role that has emerged in recent decades regularly represented in global discourse by multinational companies’ diversity campaigns and in quadrennial advertisements for the Paralympic Games, derives from the requirements of neoliberal capitalism and is just as tightly bound to ableist values as the older disabled role.
This new role can be understood, in keeping with Tanya Titchkosky’s definition of the ‘able-disabled’ (Titchkosky, 2003, 2007) as centred on the subset of disabled people who are most likely to be able to adapt to existing social structures, particularly in terms of productivity—those who can survive employer’s tendencies to compare disabled job seekers with ‘ideal’, non-disabled workers in terms of productivity (Østerud, 2022). This is the group whose combination of resources (embodied, social and economic) is sufficient for them to compete in work life and other societal fields. This minority within the minority may benefit disproportionately from the lowering of formal barriers to participation, for example, from anti-discrimination policies in hiring and from broader implementation of universal design. But it requires them to fit narrowly into the ideals of ‘productive citizen’, that is, someone who is unburdened by familial or care obligations and who can adapt to existing structures in most respects.
It should be remembered, of course, that the able-disabled role may be problematic even for disabled people with a relatively greater amount of resources. Mitchell and Snyder (2015) discuss the way in which ableist norms remain in force through mechanism of inclusion. Playing the able-disabled role is partly a matter of acting as a guarantor of the goodwill of the existing social system—of performatively demonstrating that the ‘full and equal participation’ envisioned by the UN Convention on the Rights of Persons with Disabilities is eminently achievable.
The performative aspect of the able-disabled role is particularly striking in working life and sports, where disabled people are regularly represented as inspirational figures or super-crips (Grue, 2015; Howe, 2011). Where the older disabled role was predicated on enacting debility in order to stave of accusations of malingering and the classical sick role predicated on demonstrating health-seeking behaviour, the able-disabled role requires a direct demonstration of universalistic achievement values, aimed at undercutting suspicions of diminished productivity. Again, ableism imposes a binary. The traditional disabled role confers the ‘privilege’ of a permanent exemption from the obligation to work, but at the cost of full citizenship. The able-disabled role provides a greater degree of social legitimacy, but on ableist terms, and with the added requirement of performative concealment of structural deficits. In particular, it imposes a burden of invisible work.
