Individuality over function: the role of technology in disability identity

When designing or investigating technology use among people with disabilities, researchers often overstate the importance of functional aspects at the expenses of identity. We present three case studies that showcase how people with disabilities use, or aspire to use, technology to advertise, reframe or hide their identities

“I can do everything but see!” – How People with Vision Impairments Negotiate their Abilities in Social Contexts

This research takes an orientation to visual impairment (VI) that does not regard it as fixed or determined alone in or through the body. Instead, we consider (dis)ability as produced through interactions with the environment and configured by the people and technology within it. Specifically, we explore how abilities become negotiated through video ethnography with six VI athletes and spectators during the Rio 2016 Paralympics. We use generated in-depth examples to identify how technology can be a meaningful part of ability negotiations, emphasizing how these embed into the social interactions and lives of people with VI. In contrast to treating technology as a solution to a ‘sensory deficit’, we understand it to support the triangulation process of sense-making through provision of appropriate additional information. Further, we suggest that technology should not try and replace human assistance, but instead enable people with VI to better identify and interact with other people in-situ

Value beyond function: Analyzing the perception of wheelchair innovations in Kenya

Innovations in the field of assistive technology are usually evaluated based on practical considerations related to their ability to perform certain functions. However, social and emotional aspects play a huge role in how people with disabilities interact with assistive products and services. Over a five months period, we tested an innovative wheelchair service provision model that leverages 3D printing and Computer Aided Design to provide bespoke wheelchairs in Kenya. The study involved eight expert wheelchair users and five healthcare professionals who routinely provide wheelchair services in their community. Results from the study show that both users and providers attributed great value to both the novel service delivery model and the wheelchairs produced as part of the study. The reasons for their appreciation went far beyond the practical considerations and were rooted in the fact that the service delivery model and the wheelchairs promoted core values of agency, empowerment and self-expression

The Global Care Ecosystems of 3D Printed Assistive Devices

The popularity of 3D printed assistive technology has led to the emergence of new ecosystems of care, where multiple stakeholders (makers, clinicians, and recipients with disabilities) work toward creating new upper limb prosthetic devices. However, despite the increasing growth, we currently know little about the differences between these care ecosystems. Medical regulations and the prevailing culture have greatly impacted how ecosystems are structured and stakeholders work together, including whether clinicians and makers collaborate. To better understand these care ecosystems, we interviewed a range of stakeholders from multiple countries, including Brazil, Chile, Costa Rica, France, India, Mexico, and the U.S. Our broad analysis allowed us to uncover different working examples of how multiple stakeholders collaborate within these care ecosystems and the main challenges they face. Through our study, we were able to uncover that the ecosystems with multi-stakeholder collaborations exist (something prior work had not seen), and these ecosystems showed increased success and impact. We also identified some of the key follow-up practices to reduce device abandonment. Of particular importance are to have ecosystems put in place follow up practices that integrate formal agreements and compensations for participation (which do not need to be just monetary). We identified that these features helped to ensure multi-stakeholder involvement and ecosystem sustainability. We finished the paper with socio-technical recommendations to create vibrant care ecosystems that include multiple stakeholders in the production of 3D printed assistive devices

e-NABLE: DIY-AT Production in a Multi-Stakeholder System

The e-NABLE community is a distributed collaborative volunteer effort to make upper-limb assistive technology devices available to end users. e-NABLE represents a do-it-yourself (DIY) approach to traditional prosthetic care. In order to learn about the attitudes and challenges of stakeholders working in and around e-NABLE, we conducted interviews with 12 volunteers in the e-NABLE movement and 3 clinicians. We found that volunteers derive a rich set of benefits from this form of altruistic activity; that both volunteers and clinicians recognize that end users benefit from aesthetic customization and personal choice in device selection; and that volunteers and clinicians bring separate, but potentially complementary, skills to bear on the processes of device provision. Based on these findings, we outline potential ways for volunteers and clinicians to optimize their talents and knowledge around the end goal of increased positive patient outcomes

Exploring the composite intentionality of 3D printers and makers in digital fabrication

In this paper, we identify new relationships between technologies and people in the context of digital fabrication. Our research applies a postphenomenological lens to understand and identify such relationships by using the concept of intentionality, an idea that relates to how humans and technologies, in their corporeal sense, direct themselves at the world rather than their purpose of action. We conducted a study wherein we first modified four 3D printers that highlight technological intentionality by either reducing, redirecting, reshaping, or redistributing the CAD model and filament of a given print. Next, experienced makers were invited to print models with one of four printers and reflect upon the effects of the coupling between their intentionality and that of the 3D printer. We contribute descriptions for new ways to frame human-technology relationships within the context of digital fabrication and highlight three relationships with machines: anticipatory, itineration and resistance, and their implications

Warm Solutions: Medical Making & Collaborative Infrastructure for Care

Making, as an activity and culture, enables people to participate in technological innovation at non-traditional sites. In healthcare settings, medical makers undertake activities as a part of routine, professional care practice. Their collaborative process occurs at the intersection of centralized healthcare systems and decentralized maker technologies with reflexive opportunities for human-centered design. In my research, I propose a critical view of medical making as an opportunity to reposition the power to participate in design within traditional healthcare practice. I develop my thesis from multiple efforts in a wide ecosystem of medical makers across private and public practice, STEM institutions, academic research labs, and non-profit groups. I apply Science and Technology Studies (STS) and HCI theories to analyze stakeholder efforts in relation to long-term patient-centered care infrastructure. Embedded in practice, infrastructure becomes visible in relation to its use. In my dissertation, I develop an understanding of how stakeholders in healthcare settings and networks influence care infrastructure with maker technologies. I do this by foregrounding the norms, values, and expertise related to stakeholder participation across three sections. First, I re-locate the site where physician-led making begins from labs to the bedside – as safe, reliable, small-scale prototypes. Second, I re-frame the importance of medical making, with lessons from the COVID-19 pandemic, when grassroot- and institutional makers repaired temporary manufacturing breakdowns by creating reliable medical supplies. Third, I re-center the role of point-of-care medical makers, highlighting present-day nurse contributions as makers and contrasting their historically undocumented contributions in routine care. My research work culminates in a discussion of the human infrastructure, in addition to information systems, required to design environments for innovation based on the case study of medical making. For HCI researchers, this work first diversifies design values of novelty to include healthcare values of safety, reliability, and verifiability in collaborative systems, and second, extrapolates lessons from medical making to build fair, equitable, and sustainable infrastructure for collaboration between experts and non-experts. From these value-driven insights, I hope my work further contributes practical, methodological, and ethical implications for multiple stakeholders including policymakers and researchers.Ph.D

YouTransfer, YouDesign: A participatory approach to design assistive technology for wheelchair transfers

Transferring independently to and from their wheelchair is an essential routine task for many wheelchair users but it can be physically demanding and can lead to falls and upper limb injuries that reduce the person’s independence. New assistive technologies (ATs) that facilitate the performance of wheelchair transfers have the potential to allow wheelchair users to gain further independence. To ensure that users’ needs are addressed by ATs, the active involvement of wheelchair users in the process of design and development is critical. However, participation can be burdensome for many wheelchair users as design processes where users are directly involved often require prolonged engagement. This thesis makes two contributions to facilitate wheelchair users’ engagement in the participatory design process for ATs, while being mindful of the burden of participation. The first contribution is a framework that provides a modular structure guiding the participatory design process from initial problem identification and analysis to facilitating collaborations between wheelchair users and designers. The framework identifies four factors determining the need and adoption process for ATs: (i) People focuses on the target population, (ii) Person includes personal characteristics, (iii) Activity refers to the challenges associated with the task, and (iv) Context encompasses the effect of the environment in which the activity takes place. The second contribution constitutes a rich picture of personal and external elements influencing real world wheelchair transfers that emerged from four studies carried out to investigate the effect of the framework factors on the design process for ATs. A related outcome based on these contributions is a framing document to share knowledge between wheelchair users and designers to provide focus and promote an equal collaboration among participants

E-textiles for Self-Expression: Participatory Making with Blind and Visually Impaired People

This research explores how blind and visually impaired (VI) people can engage with e-textiles in creative and tactile ways, by making interactive e-textile art pieces to tell their own stories. Touch, gestures used to interact with textiles and e-textiles, and association of meaning with objects are central concerns of the work, in the context of how different materials can evoke and be used in self-expression. The research focuses on how VI participants can design and make their own e-textile objects, bringing in ideas of empowerment and agency, and drawing attention to what characterises an effective ‘participatory making’ environment. Three studies are reported. The first study observed practices at two schools for blind and VI children/young people to establish how ‘objects of reference’ are used within the classroom environment, and what other sensory stimulation is important. The second study involved two series of hands-on e- textile making workshops, at a charity for VI people, and at a contemporary art gallery, to explore how visually impaired participants can design and make personal e-textile objects. The third, a laboratory study, investigated what associations and gestures visually impaired participants used with e-textile sensors that had different textures and functioned in different ways. The research explored the potential of participatory making of e-textiles in terms of touch, personal association, accessibility, and creativity. The research identifies some effective practices for participatory making of e-textiles with visually impaired people, including a modular approach to circuit-making. It highlights the importance of ownership of the process for the participants. It demonstrates that, although there is ‘no common language of gesture’ for touch-based interaction with e-textiles, conventions can be established through example or consistent use. It outlines the ‘lessons learned’ in working with blind and visually impaired people, which can inform other researchers, designers, or artists interested in participatory making