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Beyond Humanist Formation

Understanding Ethics and Disability Justice in a Post-Human Era
by Shreyans Baid 

Course: Ethical Leadership

Instructor: Pinar Guvenc

Assignment: Understanding Ethics

October 8, 2023

“Humanist formations are predicated upon some kind of bounded, rational, autonomous and sovereign human subject, the post-human condition suggests something more expansive, relational and nomadic”. My intention with this dissertation will be to find a connection between the conceptual notions of the post-human condition and the intricate web of ethics, making it evident that the very fabric of human understanding is continuously evolving. Just as the post-human perspective explains a shift from an isolated human entity to a more intertwined, relational, and dynamic being, the essence of ethics too underscores the significance of interconnectedness and the myriad relationships we are embedded in. This helped me understand that ethics is about ‘relationships’. It revolves around the intricate web of relationships between internal moral considerations using associations with ideologies and the broader external network that encompasses us. Principally, ethics is concerned with the way individuals interact with the world around them, which includes not only their own moral beliefs and principles but also the complex social and environmental contexts in which they exist. Fundamentally, it is about how individuals navigate these relationships and associations while striving to make morally sound decisions and judgments.

''ethics is about ‘relationships’. It revolves around the intricate web of relationships between internal moral considerations using associations with ideologies and the broader external network that encompasses us.''

     First and foremost, ethics involves one's internal moral compass—a set of principles, values, and beliefs that guide behaviour and decision-making. These deeply personal internal considerations can be influenced by various factors, such as upbringing, culture, religion, and personal experiences. They serve as the foundation upon which ethical decisions are built. However, these considerations do not exist in isolation. They are inextricably linked to the external world. Our actions and choices have consequences that ripple through society, affecting others and other things. Therefore, ethics requires individuals to be mindful of their roles and responsibilities within this broader context. It also highlights the relationships and associations people form with others as presented to us in the ethics of care by Virginia Held. Considering the rights, interests, and well-being of others when making decisions, and recognizing the importance of fairness, justice, and respect in interpersonal relationships and in the wider societal context, spells out ethics.

     Ethics resides not solely in its complexity but also in its nuances and intricacies. it can be related to the historical and philosophical foundations of ethics. The historical and philosophical foundations of ethics, as represented by utilitarianism, deontology, and a more novel normative theory in Virginia Held's perspectives on the ethics of care, provide different lenses through which to view ethics in terms of relationships. Utilitarianism emphasizes the consequences of actions on overall happiness, deontology emphasizes universal moral principles, and Held's critiques stress the importance of practical validation within real-life relationships and associations. 

Transitioning from the broad philosophical frameworks discussed above, I decided to delve deeper into the real-life implications of these concepts, specifically focusing on the lived experiences of those with disabilities. The convergence of ethical theories and post-humanist thoughts in the context of social and disability justice emerges as a testament to the adaptability and depth of human interactions. Here, personal stories mix with society's set ways, showing the challenges of living in a world where our early beliefs often shape how we see and act.

     I am 6 weeks into my capstone project which touches upon parenting in the context of people with mobility disabilities and this subject takes me out of my comfort zone not because I dont have experience in it, not because I feel overwhelmed easily but because I work with one of my classmates who is a wheelchair user. We have become great friends now and he constantly keeps on joking about his experience as a paraplegic. The first thing he said to me was “hey buddy, use me as a Ginnie pig for as many questions as you want about our project” since he is considering being a parent too. But it's not that simple. I pause every time I have to ask a question regarding the topic, to frame it correctly so that I dont unintentionally say something that's wrong or makes him uncomfortable. As a matter of fact just by engaging in this act of thinking before saying I put myself on the ableist side of the spectrum. I often find myself in this moral dilemma, but it gets easier every day. Untill today I didn't realise that my brain was deeply conditioned by the way the world functions, it only surfaced when I met my new friend. Thinking about rights and the future begins from early childhood and it is crucial in the developmental understanding of how children come to recognize and understand social norms, fairness, responsibility, and their evolving conceptions of time. As children grow and interact with their environments, they form foundational ideas about these concepts. 

     John Harris in his journal article ‘One principle and three fallacies of disability studies’ characterizes disability as a condition that someone has a strong rational preference not to be in and one that is in some sense a harmed condition and situates harmed conditions relative both to one's rational preferences and to conditions which might be described as harmful, not relative to normal species functioning but relative to possible alternatives. Another lens was presented by Buchanan et al where they state that whether a typical function's impairment is deemed as a disability depends on the person's social environment which seems inconsistent because they define disability as not being able to do things that most people in the same group (like adults) can usually do.  It's critical to emphasize these perspectives because many individuals fallaciously associate disability relative to normal species functioning. Talking about fallacies in regard to disability studies and popular opinion, some understand that if you choose to fix or enhance something about a person, it means the original state was really bad or that the person was of lesser worth, But this isn't true and some believe that if you choose certain health traits for your kids (like making them healthier or more capable), you're being unfair or unequal. It is also wrongly understood that disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. From a semantics point of view, these fallacies significantly impact the ethical interpretation and understanding of disability, as it gets acquired by the masses.  From the version of the principle of equality, all persons are equal and none are less equal than others and in that sense, no disability however slight nor severe implies lesser moral, political or ethical status, worth or value.

     The history of the language around disabilities is disempowering. Anthropologist Bronislaw Malinowski posited that language and culture are inextricably intertwined, asserting that "our language embodies our cultural values, and its usage provides insight into our cultural norms." Historically, cultural narratives have often marginalized, overlooked, and devalued individuals perceived as distinct or living with disabilities.

     A society's attitude towards individuals with disabilities can be gauged by the language and terminology it employs to describe them. Labels can diminish individuals by emphasizing their disparities or limitations instead of recognizing their unique identities. Such designations can pigeonhole people into predefined categories, often overshadowing other aspects of their identity. These tags end up serving as a simplistic mental reference, such as "the disabled," "homeless," or "single parents," among others.

     Until not long ago, the dominant perspective on disability was the medical model. In this view, the individual with the disability was perceived as the issue, “We are to be adapted to fit into the world as it is”. In the late 1980s, thanks to the advocacy of individuals with disabilities, there was a paradigm shift in understanding disability. They argued that disability is shaped by societal perceptions and structures. As a result, the focus transitioned from the medical model, which viewed the medical condition as the problem, to the social model. This new perspective identified societal prejudice, discrimination, and lack of accessibility as the disabling factors rather than medical conditions. To avoid upsetting or offending, society searched for more considerate terms: physically challenged, visually impaired, differently abled, and disAbled, among others. Canadian songwriter Jane Field expressed this very sentiment in The Fishing is Free: 

No one knows just what to call us which label should befall us, And they’re some dandy terms from which to choose. My favourite’s “wheelchair-bound” ‘cause it has a bondage sound. Oh it’s fun to guess what term they’re going to use 6.

social model of disability.png

I question whether the titles "Olympians" and "Paralympians" are seen as equivalents, representing the same level of athletic skill, dedication, and perseverance. Makes me wonder, why do we differentiate between these athletes? What's the reason behind this distinction? And what beliefs or misconceptions might it perpetuate?

    As I delved deeper into disability justice, I recognized the influence of capitalism on object creation. Through my narrative enquiry, I've discovered that while disabled parents often purchase products for their intended use (mostly for kids), they frequently need to modify these products or find inventive solutions for daily life. This highlights their remarkable adaptability, showcasing their roles as bricoleurs but it majorly exposes the ableist model of parenting arising from these societal moralities and ethics that inadvertently marginalize and discriminate against those who don't fit this narrow conception of 'normal'. Sasha Costanza-Chock astutely addresses this in her book when discussing “How Does the Matrix of Domination Shape Affordance Perceptibility and Availability?”. Individuals with disabilities who contemplate becoming parents frequently encounter medical professionals advising them against having children. These professionals, who are in positions of authority, imply it might be best if they didn't have children to prevent them from potentially having similar disabilities . This arrangement is amplified by medical professionals, representing a certain set of ideas, that possesses authority and is typically trusted for guidance because ideas are embedded in social arrangements which in turn produce effects. As a design practitioner, my initial approach was to examine how these ideas, arrangements, and their resulting effects influence temporal considerations concerning disability and parenting. 

     The notion of humanist formations and the posthuman condition, as presented by Liddiard and colleagues, offers profound implications for ethics and disability justice. Traditional humanist views have often confined disability to rigid, narrow categories, emphasizing deficits and relying on a binary of able/disabled. This "bounded and rational" perspective has frequently led to exclusionary practices and policies. However, the posthuman perspective, with its emphasis on the expansive, relational, and nomadic, offers an opportunity that resonates deeply with the core tenets of disability justice.

   

    Drawing from the perspective that ethics is deeply rooted in relationships, understanding disability justice goes beyond individual conditions or challenges. It is a reflection of our collective moral fiber, woven from our inner convictions and the societal structures around us. Our ethical stance on disability should not be confined to personal beliefs but must consider the broader societal and environmental contexts. 

     People with disabilities still face challenges in achieving full recognition as equals in society. The words we choose to use, the things we teach children, the products that we design, the environments that we create, the knowledge that we absorb, and the classifications we impose,  play a significant role in fostering equality. When we categorically distinguish people based on ability, we must question the moral implications of such differentiation. What ethical rationale underpins this distinction? Does it inadvertently propagate certain stereotypes that might hinder the broader goal of achieving genuine equality and understanding? Who is making these decisions for the people who are experiencing it? The challenge, ethically, is to ensure that our interactions, decisions, and judgments regarding disability are grounded in respect, understanding, and a genuine effort to nurture an inclusive and equal world for all.

References
 

Kirsty Liddiard et al., “Working the Edges of Posthuman Disability Studies: Theorising with Disabled Young People   with Life‐limiting Impairments,” Sociology of Health and Illness 41, no. 8 (June 7, 2019): 1473–87, https://doi.org/10.1111/1467-9566.12962.

 

Sophie Savage and Tillie Curran, “Disability Rights and Robotics Co-Producing Futures,” International Journal of DISABILITY AND SOCIAL JUSTICE 3.2, August 25, 2023, 28, https://doi.org/10.13169/intljofdissocjus.3.2.0026.

 

John Harris, “One Principle and Three Fallacies of Disability Studies,” Journal of Medical Ethics 27, no. 6 (December 1, 2001): 383–87, https://doi.org/10.1136/jme.27.6.383.

 

 Allen Buchanan et al., From Chance to Choice, 2000, https://doi.org/10.1017/cbo9780511806940.

 

Glenda Hyatt and Sparc BC News, “What Is in a Word? The Evolution of Disability Language,” ., season-03 2005, https://www.amssa.org/wp-content/uploads/2016/01/watson-hyatt-what-is-in-a-word.pdf.

 

 Sasha Chock, “Design Values: Hard-Coding Liberation?,” Design Justice Community-Led Practices to Build the Worlds We Need, 2020, https://doi.org/10.7551/mitpress/12255.001.0001.

 

Eliza Hull, We’ve Got This (Black Inc., 2021).

 

Lori Lobenstine, Kenneth Bailey Bailey, and Ayako Maruyama, Ideas Arrangements Effects Systems Design and Social Justice (Minor Compositions, 2020).

01.

Embracing Discomfort

An Autoethnographic exploration of cultural identity and design.

03.

Material Cultures and Creative Praxis:

An Ethnographic Analysis of the Parsons School of Design Wood Workshop.

04.

Access as a mindset:

Challenges of Ethical Leadership in the context of accessibility.

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