6. The HUMAN Value

In Kittay’s essay, McMahan’s argument about how “profoundly retarded people” are “less than human” and become undesired liability for human society makes me speechless. In addition to segregating a child with cognitive disability from the rest of humanity based on intellectual faculty, McMahan implied that he found people with cognitive disability to be more of a nuisance than nonhuman animals because they “make moral demands on other people that nonhuman animals cannot make on any of us” (622). His argument gives me flashbacks to the COVID-19 anti-mask sentimentality. Many anti-maskers argued for the ableist superiority of their personal freedom over other’s safety, disregarding the health risks it posed for people who are disabled or immuno-compromised. They also can be self-centered about minor inconveniences caused by the global public health crisis, feeling threats of pandering censorship - echoed by McMahan believing he and Singer “engaged in a fair amount of voluntary self-censorship…trying very hard not to say anything offensive” (622). And similar to how Singer and McMahan relegate challenges faced by children with cognitive disabilities to their parents or caretakers instead of addressing them as social and political issues, anti-mask people tended to hyper-focus on masking as a personal choice rather than a collective public health effort. Juxtaposing these two different contexts together brings to light how disability identities are silenced or erased in our society. 

Thinking from a design perspective, I think one important aspect is to balance between (1) acknowledging the common needs shared by all humans as a way to de-stigmatize disability and (2) highlighting disability-specific needs or tracing ideas backed to disability-related lineage (similar to our previous discussion on universal design, super-normal design, and disability-led design). The DIY squeeze chair by Temple Gradin and the later commercialized versions are good examples. The colorful and playful design of the commercial squeeze chair makes it appealing for diverse users, but also clearly declares its target consumers as autistic people. It thereby acknowledges its lineage from pressure therapies for autistic spectrum without being exclusive. In contrast, the hug machine series by artist Lucy McRae are presented very differently (see images below):

Personally, I see McRae’s installation as a more aesthetic and themed version of Grandin’s DIY machine and the commercial squeeze chair. McRae’s narrative on her websites focuses on the sci-fi novelty and sensory exploration side of the work without any reference to the disability lineage from Grandin (and I think it’s virtually impossible that McRae does not know about Grandin’s squeeze machine considering its age and influences). Although I can understand McRae’s logics to highlight her creative effort in making multi-sensory art without diverging into a very different subject of disability design, I wonder whether this could become a gesture of over-shadowing disabled creators and indirectly barring disability-driven design from entering the public attention?

More of McRae's work:

5. What makes us HUMAN?

To the questions of what the philosophical ground for would be preserving disability experiences and what characteristics make a person, I have two incomplete answers:

The first is that understanding and preserving disability experiences foster acceptance of differences in humans so as to avoid these differences being exploited as tools of socio-political repressions. So many wars, conflicts, and genocide in human history originated from the superiority complex of a specific social group who aimed to ostracize and eliminate people different from them (i.e. differences in race, ethnicity, religion, gender, disabilities, etc.). Therefore, understanding human differences as normal allows us to acknowledge how our bodies and identities can change over a lifetime, and develop respect for others without segregating humans as the superior vs. the inferior. For example, this mode of segregation and political marginalization can be traced in American culture that considers deaf people to be “inferior races” and sign language as the most “savage” of languages. In contrast, oralism was considered “superior” and the “normal” American should be “godly, educated, civic-minded, and hearing” (Virdi 12). 

The second is that acceptance of differences can facilitate understanding of individual vulnerability, hence highlighting the importance of interdependence and flexibility to accommodate varying circumstances. This prompts us to rethink the neoliberal individualistic mindset that focuses on problem solving in the form of individual cure rather than communal support (Baumann & Murray; Virdi). The history of Deaf culture shows that while “the complete reliance on speech inevitably impaired the educational and linguistic development of many if not most deaf children”, the development of sign language and funding of supporting schools, institutions, and organization successfully “provided them with an education nd introduced them to the urban deaf community” (Baynton 50). Baynton also proposed that, “Were everyone to use ‘a language addressed not to the ear, but to the eye… the present inferiority of the deaf would entirely vanish” (Baynton 49). Similarly, the touch tours discussed by Kleege shows that accommodating haptic tourism for art exhibition creates a moment of interdependence between the blind visitor and the docent. These references demonstrate that accommodation and interdependence offers space to generate new insights that wouldn’t be possible in the visual-centric interpretation of art. Therefore, the preservation of disability experiences allows opportunities to build interdependent connections that further allow us to adapt to interface with different humans and environments.

4: Access of Multi-sensorial Architecture

Fitzsimons's analysis of the Memorial to the Murdered Jews of Europe foregrounds the question of how prioritizing vision as a sense and upright walking as a form of mobilization limits out understanding and design of architectural experience. This limitation ends up restricting our understanding of “access” as implementing compensatory measures for disabled people (i.e. wheelchair users, clutch users, blind people in the case of the Memorial) to navigate the space as equally to their non-disabled peers as possible. To propose a way of going beyond being reactionary and compensatory, Fitzsimon reads the design of the Memorial’s inaccessible pathways as turning the disorienting routes to be the sensorial embodiment of the loss and somberness caused by death. While many disabled people found the pathways difficult to navigate, the design draws attention to sensory stimuli that is commonly overlooked in spatial navigation, such as air pressure and temperature changes from direct sunlight. This exploration to interact with space without being bounded by vision and upright mobility offers new ways to understand and think about the world, as Fitzsimon elegantly puts it: “A design process nourished by the ways that bodies with different sensory and mobility capabilities develop impressions of architecture could result in environments where we see otherwise through touch, feel otherwise through sounds, hear otherwise through vision” (95). This analysis shows how our society has become hyper-focused on vision and upright mobility as necessary survival traits. This is in part driven by the industrialist capitalistic emphasis on efficiency and productivity, reducing human labor to components of a larger machine. Therefore, Fitzsimon’s proposal also brings up the needs to re-evaluate what productivity means in an accessible and inclusive workforce. 

While I do think Fitzsimon makes a valuable argument in de-constructing the binarism of accessible vs. inaccessible, I wonder to what extent proposing alternative ways to sense the environment can serve to destigmatize disability. For example, seeing through touch and feeling through sound can have different connotations for non-disabled people vs. disabled people who experience sensory or mobility loss (e.g. blind people, deaf people, amputees, people who are paralyzed, etc.). For the non-disabled, seeing through touch and feeling through sound serve as supplement or substitute to their other sensory modals for introspective or recreational purposes. Yet for the latter, these “alternative” sensory channels are what they depend on to survive. Therefore, I wonder how comprehensively does shifting sensory perspective reveal and address the disabling experience that poses barriers to people.

3: Extraordinary, Super-normal, & Chair

In Pullin’s text, the opposition of universal is the “remarkable”, while the universal corresponds to the unremarkable, familiar, extra ordinary, and super normal. Here, the “super normal” means the ability to blend into daily life and serves its users effectively without drawing attention to its meticulously designed qualities or its relationship to the surrounding environments. Furthermore, as Pullins quotes Rams in the text, “Good design is unobtrusive…they are neither decorative object nor work of art. Their design should… leave room for the user’s self-expression” (7). Therefore, Pullin and Ram’s interpretation of the super normal can be read as supplementary tools to augment the lived experience of users without overshadowing their identities. Its unremarkable quality stands in opposition to Dunne and Raby’s proposal of B-listed design that is speculative and critical, or design that uses its very existence as agency for asking questions, debate, friction, and provocation. 

In Hendren’s chapter on “Chair”, the universal also means the accessibility of the DIY process for non-design professionals (aka parents, caretakers, OTs) and the horizontal knowledge system that acknowledge their contribution. Additionally, the universal also signifies the adaptability of the design itself as the users’ body develops and changes. Different from Pullin’s focus on the role of design professionals in delivering super normal designs, Hendren and Manzini’s highlights the participatory / diffuse design process and the adaptive nature of the projects as core to universality. This participatory and adaptive nature of this approach find parallels in the history of DIY hacks by disabled people to navigate inaccessible spaces (Williamson) and the disability-led design campaigns (Halstead).  
Personally, I found the notion of “super normal” proposed by Pullin resonates with the concept of “embodiment” used in critical disability studies. As Wilkerson puts it, “Embodiment is a way of thinking about bodily experience that is not engaged solely with recovering the historical mistreatment of disabled people. Rather, it includes pleasures, pain, suffering, sensorial and sensual engagements with the world, vulnerabilities, capabilities, and constraints as they arise within specific times and places.” Namely, embodiment is rooted in the sensorial and emotional experiences of living ordinary everyday life. This emphasis on ordinary vulnerability and struggles echoes how the “super normal” acknowledges the “subtleties that can be overlooked and undervalued” (Pullin 5). Compared to heroic or triumphant narratives of the disabled experiences, the “super normal” nature of embodiment centers discussion on how disability is an inherently “normal” and ordinary elements of human life course. By critiquing the segregation between normal vs. abnormal bodies, unremarkable vs. triumphant disabled experiences, the “embodiment” of the extra ordinary bodies and the application of the “super normal” design can be integrated as a conceptual framework to guide works on de-stigmatizing and de-mystifying disability. This framework can help the design model to steer away from the hype of technological innovation that may overlook the relationship between users and their bodies.

2: Social Model, Design Model, & Medical Model of Disability

I personally interpret the design model of disability as an extension of the social model. The social model recognizes disability as the result of discrimination and exclusion perpetuated by ableist public policies, inaccessible education and infrastructure, abusive or dismissive practices of employers, legal guardians, medical-authorities, and other non-disabled people. Extending from social model’s conceptual foundation which recognizes external disabling factors, the design model zooms in on how the designed environments, objects, services, and interfaces can disable or enable someone.

While the social model critiques the structural barriers that challenge disability rights on a higher level, the design model focuses on actionable things we can do by incorporating professional knowledge and technological innovation to destigmatize disability (Williamson and Guffey 5). On that note, the design model is more pragmatic and optimistic as it emphasizes everyone’s active agency in working towards the inclusion of marginalized communities. The similarities and difference between the social model and the design model reminds me of the “critique-repair” spectrum from our class discussion. For me, the social model leans towards “critique” while the design model leans toward “repair”, a process fueled by interrogating, adapting, and innovating the relationships between bodies and materials. 

However, I do agree with Shew’s critique of how techno-ableism focusing on the restorative capability of tech-driven design can risk misleading the design model (Williamson & Guffey 6). I found the similar shortsightedness in the framing of “cyborg embodiment” when Halstead refers to the seamless integration of assistive technologies with bodies, or the “device-assisted disabled person as the ‘original cyborg’” (Halstead 18). Firstly, “cyborg embodiment” has an undertone that idolizes and sensationalizes technology as an omnipotent problem-solver, while it obviously is not. Additionally, instead of recognizing disability as inherent to human diversity, the techno-fetishist aesthetics of “cyborg embodiment” redeems and normalizes the bodies of device-assisted disabled person through the facade of progress and enhancement signified by technologies – aka, cool technologies excuse disability to be more socially and aesthetically “acceptable”. And as Shew suggested, this framing implies that disabled bodies “not properly equipped with these technologies” become inferior (Williamson & Guffey 6). I find it frustrating that the capital-driven focus on hyped cyborgian innovation can ignore the crude realities of disabled users who struggle to sustain their day-to-day routine (Halstead 19). 

1: the Crash Reel & Garland-Thomson on “Misfit”

The most memorable detail in the Crash Reel for me is that towards the end of the film, Kevin mentioned that he and his paternal family members all have severe dyslexia. Therefore, snowboarding became an escape route for him to thrive outside conventional school settings that posed barriers for children with learning disabilities. His successful pro snowboarding career thereby serves to hide his learning disabilities and to sustain the privilege of “materialistic anonymity” (Garland-Thomson 596) that allows him to pass as “normal”, as this is something that may be difficult to achieve in conventional education and career. As an athlete, not only does Kevin “fit” in, he was also idolized as “more capable” than an average human. His athletic career therefore embodies Garland-Thomson’s writing that “When we fit harmoniously and properly into the world, we forget the truth of contingency because the world sustains us” (597). 

Later, during his recovery, Kevin did not fully understand the impact of the TBI on his body, his identity, and his family until he realized he was not sustained by “the world” around him anymore. This lack of sustenance is caused by the misalignment between his athletic ambition and reputation and his physical capability to snowboard, or as Garland-Thompson suggests, a conflict between the environment and the body. It was interesting for me that while he had close contact with death, went through complex medical diagnosis and surgeries, lengthy rehabilitation, and he was aware of the emotional burden and trauma his injury caused for his family and closed ones, none of these experiences catalyzed his coming to terms with his post-injury body as much as when he realized he couldn’t snowboard well anymore despite diligent effort. When Kevin felt self-defeated about losing his snowboarding ability, he also lost his “materialistic anonymity”: he came to see himself as “misfitting” in the snowboarding community and realized his “vulnerability” due to the misalignment between the social expectation (from his corporate sponsors, supporters, and himself) and his body. This realization ended up helping Kevin better connecting with and supporting other athletes who had brain injury through empathizing on “fragility of the material body…to wounding, injury, pain, suffering, dying” (Garland-Thompson 600). Kevin’s development thus echoes Butler’s idea that the “common condition of our injurability as our bond to one another” (Garland-Thompson 599). I found it thought-provoking that Kevin’s journey from camouflaging his “misfitting” to making the “misfit” more visible allows him to both relief emotional distress and gain political agency from it (a quick Google shows that he later founded the Love Your Brain Foundation, a non-profit organization for improving life for people affected by traumatic brain injury).