Conference Agenda

It is well known that in psychiatry the relationship between medical professional and client/ patient is structurally asymmetric. In the past, psychiatrists sometimes disregarded patients’ experiences and suggestions on the grounds of their medical authority. Patients were deemed to lack understanding of their own illness or disorder. This dismissal of patients’ knowledge can be considered as an instance of epistemic injustice, that is, injustice done to someone in their capacity as knower (Fricker, 2007). With the rise of client/patient-led organizations since the 1980s (such as the Hearing Voices Network, Mind Platform and Mind Ypsilon), clients/patients, family, informal caregivers (and professionals) aim at minimizing this type of injustice. Through digitalization and internet 2.0, people with mental health problems today can increasingly assert their voices and knowledge through online platforms, which indeed may strengthen their position as knower. In addition to this communicative function, which contributes to (knowledge) community building, digitization is also increasingly used within psychiatry to design online self-monitoring platforms. For instance, an app on a smartphone that can be used by people diagnosed with schizophrenia which can help to predict a relapse and as such can help people to manage their disorder (Henson et al, 2021). These kinds of apps are based on digital phenotyping: the continuous and in situ collection of “passive” data (quality of sleep, heart rate (variation), intonation, pedometer, geolocation, activity on social media), and “active” data (surveys, questions) through personal digital devices.

Through AI a specific “digital phenotype” can be identified, which is claimed to have the potential to facilitate personalized care and cure. In our paper we will discuss how this data-driven psychiatry could impact epistemic justice in (clinical) care. Since these kinds of digital applications involve self-monitoring, they are presented as having the potential to strengthen the position of clients/patients. But on the other hand, if these apps are predominantly based on “passive” data, then we can question whether the knowledge and experience of the client/patient still matters. If the “active” experience of clients/patients is downplayed one could say that in such cases clients/patients in their capacity of knowers are wronged by the machine/algorithm. In our paper we will first briefly present a digital phenotyping project that is currently being done at the Academic Collaborative Center for Digital Health & Mental Wellbeing at Tilburg University. Through this case study we wish to explore the possible tension between the kind of self-knowledge generated by self-monitoring platforms, on the one hand, and intuitive and sensorial (self-)knowledge, on the other hand.

References

Coghlan, S., & D’Alfonso, S. (2021). Digital phenotyping: an epistemic and methodological analysis. Philosophy & Technology, 34(4), 1905-1928.

Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.

Henson, P., D’Mello, R., Vaidyam, A., Keshavan, M., & Torous, J. (2021). Anomaly detection to predict relapse risk in schizophrenia. Translational psychiatry, 11(1), 28.

Slack, S. K., & Barclay, L. (2023). First-person disavowals of digital phenotyping and epistemic injustice in psychiatry. Medicine, Health Care and Philosophy, 26(4), 605-614.

Epistemic violence, or the systematic denial of one's access to knowledge, is a noted phenomenon within technological research and design (Ymous et al. 2019). Artifacts may be designed to address specific issues, but too often technologists do not involve the intended users/beneficiaries during the design process, or only do so once a problem or approach has been determined. Professional approaches and methodologies that produce technological knowledge may also privilege technical expertise over embodied knowledge and experience. Working in tandem, these social and epistemic shortcomings contribute to the erasure of certain embodiments and knowledges – certain epistemes – in science and technology. In turn, the power to determine what counts as legitimate technological knowledge is directed away from the most marginalized.

This paper presentation focuses on epistemic violence toward disabled communities, with specific attention on developing research practices that address injustices in disability-related technological knowledge. Too often, disabled individuals are denied meaningful participation in the development of technologies that are ultimately aimed at disabled communities. Whether intentional or not, disabled expertise and experience are rarely included in the knowledge communities concerned with disability-related technologies. Once an artifact has been constructed disabled experts might be invited to participate in human subjects research or clinical trials conducted toward the end of the design process that test the efficacy of an artifact. This only strengthens the testimonial injustices toward disabled expertise, as disabled participants are treated not as experts, but as test subjects. As a result, technologies often do not actually address the needs of disabled communities since those needs are typically defined before “test subject” input.

Within these disabled communities, epistemic violence manifests as ableism, specifically technoableism in the case of disability-related technologies, which positions disability as a necessarily negative experience. The long history of disability has often set technologists and professionals as experts about disability, rather than disabled people themselves. Influenced by eugenics, technoableism positions disabled disabled people as expendable if not remediated by technology (Shew 2023). But disabled scholars argue that the embodied experience of disability affords access to technological knowledge that is crucial for addressing the needs of disabled communities (Hamraie and Fritsch 2019). In order to produce technologies that actually address these needs, disabled expertise must be included throughout knowledge production and design.

What would it look like to intentionally counter epistemic violence in disability-related technology research? This paper presentation looks at and reports on the work of one approach to better incorporating disabled people in technological research (de-identified for this abstract) in contrast to other approaches. The project partners with technology research groups to bring disabled experts into a knowledge community as meaningful contributors. During a consulting session, technologists present current research projects to a small group of disabled consultants (always with a variety of disability types) recruited from the local area. Consultants are allowed free reign to interact with the artifacts before engaging in a dynamic feedback session in community with each other, as well as technologists and the project team. Finally, the project team writes a report based on the discussion (and follow-up feedback sessions as needed) for the technology research group with a summary of the session and recommendations for future research.