Forgotten publics: considering disabled perspectives in responsible research and innovation

ABSTRACT

Responsible Research and Innovation (RRI) in healthcare requires a more substantial engagement with disability theory and disabled stakeholders to counteract histories of disenfranchisement in scientific and technological innovation. Historically, disability has been configured as undesirable pathology in medicine, often assuming successes in innovation can be measured by crossing the constructed threshold between disabled and able. Employing a disability-informed perspective in RRI for healthcare innovations means dismantling passive patient roles in favor of active and meaningful engagement, contextualizing participation in histories of exclusion from public life, and creating physical, infrastructural, and social spaces that value and encourage disabled perspectives. Ultimately, this piece argues that recognizing disability as a crucial epistemic resource can aid in the production of more transparent, inclusive, and meaningful research and innovation.

KEYWORDS:

• Disability
• disability studies
• public engagement
• responsible research and innovation

Introduction

The social and political relationship between disability and science and technology has recently received increased attention in science and technology studies (e.g. Hamraie and Fritsch 2019; Shew 2020), policy recommendations (MacLachlan et al. 2018) and public dialogues (e.g. #disabilitydongle as coined by Liz Jackson). The perceptions of disabled people ¹ and questions of disabled participation in democratic deliberation around scientific and technological innovation, however, have not yet been attended to in Responsible Research and Innovation (RRI) outside of the occasional acknowledgement of ‘patients’ as a stakeholder category in healthcare innovation. Disability occupies a unique niche in the history and contemporary development of scientific and technological innovations, making it imperative to confront the ways in which both disabled bodyminds ² and disabled perspectives have been excluded, exploited, and subjugated in science and technology when considering RRI for healthcare innovations. Further, the lived experience of disability provides a unique epistemic resource for the development of healthcare innovations. The practices of RRI, specifically meaningful public engagement, present a pathway for the inclusion of these perspectives.

For the purpose of this article, disability does not refer to a list of diagnosable or clinically detectable conditions, but a contextual and contingent state of being determined by biological, social, political, and cultural conditions (Wendell 1996; Siebers 2013). Disability exists only in relation to its counterpart, ability, which itself is determined by the demands of a given social, political, and physical context (Goodley 2014). This is not to say that biological and physiological differences do not exist, but to highlight that the binary between able/disabled (healthy/unhealthy or well/unwell in the context of chronic illness or other medicalized states of being) is one that is not stable or predetermined. This is particularly salient in the development and use of healthcare innovations, where metrics for success are often reliant on crossing the constructed threshold from disabled to able.

Silva et al. (2018) argue that greater attention to RRI is necessary in healthcare due to the recent proliferation of technological innovations in health-related research and practice – growth that has been inequitably designed and deployed. They specifically number ‘people with disabilities and mental illnesses’ among communities facing discrimination, bias, and inequalities through healthcare innovation, calling attention to the socially-contingent meaning of disability, which both influences and is influenced by technological innovation. Where disability has elsewhere been explicitly considered in RRI, it is often in a framing that configures disabled participants as patients or the intended recipients of biomedical intervention (e.g. Nielsen and Boenink 2019). While patient involvement in research and development is a laudable practice, ‘patient’ is often the only available role for disabled stakeholders. This designation configures them as passive recipients of technological interventions, undermining both their expertise and agency by reifying disability as a physiological phenomenon in need only of medical treatment or cure (Shyman 2016; Monteleone 2020).

Additionally, RRI focus on innovation’s role in future-making requires specific attention to disabled bodyminds and perspectives. As Stilgoe, Owen, and Macnaghten (2013) write, responsible innovation is directly concerned with the expectations and imaginaries of innovators, which work not just to predict the future, but to ‘shape desirable futures and organise resources toward them’ (1571). The qualifier ‘desirable’ as understood by the stakeholders who have traditionally occupied the role of innovator in healthcare settings creates tensions with disabled perspectives and desires. Disabled bodyminds have been configured as problems to be solved in healthcare. Under this paradigm, ‘disability is seen as the sign of no future’ (Kafer 2013, 3). The understanding of disability as futureless takes on two distinct meaning. First, disabled people are understood as having no quality future or future worth allocating public or shared resources toward. A current example of this paradigm can be found in recent triage guidelines for the COVID-19 pandemic, which factor disability, irrespective of its relevance to treating COVID-19, in quality of life determinations (Solomon, Wynia, and Gostin 2020). Second, disability as futureless means future-planning both does not include disabled perspectives and futures are actively constructed to eliminate it. Rosemarie Garland-Thomson (2012) refers to this perspective as a ‘eugenic logic’ that ‘tells us our world would be a better place if disability could be eliminated’ (342). When disability is constructed solely as individual pathology, its undesirability is taken for granted, and the epistemic resources of disabled perspectives foreclosed on. The foreclosure on disabled futures has come sharply into focus during the COVID-19 pandemic, whether through blanket Do Not Resuscitate orders applied to people with intellectual disabilities in the UK (Hosali 2020) or healthcare systems in the US that may be structured to systematically deny care to intellectually disabled individuals (Silverman 2020). Such instances beg the question: is it possible for healthcare systems to innovate responsibly while built on a foundation that assumes disability as undesirable pathology?

The processes that characterize RRI seem poised to address many of these concerns through a commitment to transparency, dialogue, and diversity. Potential issues arise, however, when examining RRI from a critical disability studies perspective. These issues are magnified by RRI’s relative inattention to disability. The remainder of this article will first discuss how a disability-informed perspective may nuance the core principles of RRI and then specifically consider the epistemic and citizenship contestations in the construction of participating publics.

Applying a disability-informed perspective to RRI

RRI is built on a foundation of transparency, iteration, and public deliberation, but who is included in that process and the practical means for achieving that ideal have not always been so robustly articulated (Rip 2016; Delgado and Heidrun 2018). One of the cornerstones of RRI is the explicit recognition of the social and political dimensions of science and technology. When considering RRI from a disability-informed perspective, the social and political dimensions of disability must also be attended to. Under this paradigm, disability is not simply a set of physiological conditions, but a contingent and evolving social position (Shakespeare 2013). Anticipation must then include how science and technology both inform and are informed by the shifting and situated understanding of what constitutes disability. Reflexivity must include recognizing the value systems that mobilize communities, publics, and organizations. For healthcare innovations, these systems almost always include models that pathologize and individualize disability, models which undermine disabled perspectives in the deliberative process (Wendell 1996). Reflexivity must also include acknowledgement of power imbalances resulting from or in epistemic contestations, particularly those between medical and experiential knowledge of disability. These imbalances are acutely experienced by people with intellectual and cognitive disabilities, whose perspectives are often deemed nonrational, irrelevant, or non-existent. Further, reflexive practices must grapple with assumptions about the emancipatory nature of technology for disability (e.g. Shew 2020) and the deeply entrenched belief that the eventual elimination of disability is for the common good. As I have written elsewhere of the disabled experience of biomedical technologies:

Biomedical technologies … are viewed neither as wholly liberatory nor wholly subordinating, troubling a techno-determinist framework that animates much of the discourse around biomedical technologies for disability. Rather, the engagement between bodyminds and technologies is something far more plebeian. The human-technological hybridity that emerges through biomedical technologies is not, from the individual perspective, assumed to be transformative nor oppressive. (Monteleone 2020, 260)

Shew’s (2020) concept of ‘technoableism’ similarly calls attention to the deterministic narratives that drive the relationship between disabled bodyminds and technology, articulating ‘a rhetoric of disability that at once talks about empowering disabled people through technologies while at the same time reinforcing ableist tropes about what bodyminds are good to have and who counts as worthy’ (43).

Stilgoe, Owen, and Macnaghten (2013) write, ‘responsible innovation should not just welcome diversity, it should nurture it,’ but to do so requires both acknowledging the complicated histories of disability and technology and creating inclusive and accessible opportunities for knowledge exchange (1573). Simply inviting diverse and disabled people to a conventional deliberative dialogue or participatory activity fails to meaningfully engage diverse perspectives. Instead, organizations and innovators engaged in RRI must consider how stakeholders communicate, provide multiple avenues for participation, and create an environment that values and cultivates diverse perspectives and communication. Further, disabled people should not only be included as tokenized participants in downstream engagement activities, but as innovators, researchers, and planners.

Exclusion of disabled publics

How publics get constituted and which publics are included in democratic decision-making has been written about at length in the RRI literature. Disabled publics, however, require particular attention in RRI for healthcare innovations, in part due to epistemic and citizenship contestations that disenfranchise disabled perspectives and bodyminds.

Epistemic invalidation of disabled perspectives, particularly in relation to medical technologies, is well-documented (e.g. Wendell 1996; Monteleone 2020). Through the pathologization of disability, authority shifts away from disabled communities and toward medical professionals, scientific experts, and technologists. Further, disabled perspectives are more broadly excluded from civic and public participation unless able to approximate ablebodiedness and ablemindedness. Devlin and Pothier (2006) coin the term ‘dis-citizenship’ to describe this ‘system of deep structural, economic, social, political, and cultural inequality in which persons with disabilities experience unequal citizenship’ (1). This system presupposes a full citizen is fully productive in a manner that is legible to and in service of the state, a category that excludes many disabled people.

This pressure to approximate ablebodiedness and ablemindedness in pursuit of the benefits of full citizenship does not only exclude disabled people from democratic processes, but also informs how technological innovations are understood and accepted by disabled publics. As Kafer (2019) writes, ‘understanding technology as something that everyone is equally empowered to accept or reject, as something that operates within the privatized realm of individualized choice, obscures complex histories, webs, and attachments of technoscience’ (4). What Kafer refers to echoes critiques of RRI for failing to attend to the asymmetries inherent between the agents and addressees of innovation (Blok and Lemmens 2015).

Further, the enhanced focus on public and collective good in RRI may create ethical quagmires that pit the individual disabled person against a generalized able-bodied public. Again drawing on recent developments in the COVID-19 pandemic, these intractable tensions rise to the fore, from the acceptable deaths of disabled people in the pursuit of herd immunity (Shanks 2020) to propositions that personal ventilators should be reallocated from chronically disabled people to the acutely ill, formerly able-bodied (Chu et al. 2020). Disabled people are therefore both expected to utilize healthcare systems in order to approximate ablebodiedness and ablemindedness (and thus participate in social and political spheres) and to sacrifice themselves for the public good from which they are excluded. These pressures are compounded where disability intersects with other axes of oppression (Hill Collins 1990) or marginalization, such as race, class, or gender. Researchers and innovators aiming to conduct research and innovation responsibly must consider how perspectives from multiply marginalized stakeholders have or have not been solicited in public engagement. How publics get articulated in these scenarios – and how excluded communities thus become configured as disposable – requires substantial reflection.

Conclusions: disability as an epistemic resource

In a 2012 interview, René von Schomberg distinguishes RRI from its predecessors by stating ‘we no longer see the ethical aspects of new technologies as constraints, as restrictions. Instead, we look at the aims of technology development. Which positive contributions do you wish to obtain from research and innovation?’ (as cited in Zwart, Landeweerd, and van Rooij 2014, 13). This epistemic opening enabled by upstream attention to social and political dimensions of innovation dovetails with recent literature asserting the experience of disability not as a physiological problem to be solved, but a necessary epistemic resource for rethinking the terms and conditions of humanity (e.g. Garland-Thomson 2012). As Goodley (2014) writes ‘being disabled is not a tragedy, but a possibility, an affirmation’ (160). Embracing this perspective in RRI demands inclusion of disabled perspectives not only because they are impacted stakeholders, but because those perspectives offer crucial insights to innovating better.

Moving from the theoretical justification for including disabled publics to the practical work of creating inclusive deliberative dialogues and engagement means confronting histories of exclusion and tokenism. An invitation alone is not sufficient. An engagement process that is not accessible to many bodyminds and communication methods cannot be inclusive, regardless of who the invited publics are. Further, disabled communities may not have an incentive to engage in deliberative processes around technological innovations, given fraught histories with academic, medical, and scientific communities and contemporary political and social structures that fail to attend to their basic needs, desires, and perspectives. While not addressing disability specifically, Reardon’s (2013) interrogation of justice in genomic research and innovation may provide a useful call to action here. She argues that genomic researchers abdicate responsibility for the daily unmet needs of the indigenous people they seek out in their work but

if we … cede responsibility for this critical problem, questions about how we came to define and recognize lives worth supporting with our limited resources fall out of view. By assuming that genomics for all is the goal, these crucial questions remain unaddressed, and the needs, let alone the desires, of too many living beings become unrecognizable. (188)

Following this argument, it is imperative to question the universality of public and common good, to trouble the notion of consensus on ethical acceptability, and grapple with the uneasy reality of the often-intractable tension between public good and individual well-being of marginalized and disenfranchised communities. By centering disabled perspectives in healthcare innovations, these tensions rise to the fore, thus creating more transparent, meaningful, and inclusive practices in RRI.

Acknowledgements

Many thanks to Anne Hammang and Jenna Vikse for providing feedback critical for the development of this piece.

Disclosure statement

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

Notes on contributor

Rebecca Monteleone is an Assistant Professor of Disability and Technology in the Disability Studies Program at the University of Toledo.

Notes

1 The history of the language of disability has been fraught. In this article, I use identity-first language (disabled people) rather than person-first language (person with disability) in the convention of critical disability theorists and many contemporary disability activists. Disabled thinkers, activists, and public figures have written extensively on this subject, including Brown (2011) and Liebowitz (2015). Notably, person-first language is often preferred by self-advocacy groups by and for individuals with intellectual and developmental disabilities (see peoplefirst.org for more information).

2 Bodymind, a term that recognizes the body and mind as a single imbricated unit, is used here to both resist dualist discourses privileging either mind or body and to recognize cognitive and mental difference as a facet of disability and disabled experience (Price 2015).