this broken cyborg: on disability citizenship
In the quiet streets of a leafy green town, I recline in the back of an Uber to take a drive to the hospital across my street. It is a one-minute drive, but it feels like an eternity. I emerge from the backseat, thanking my driver, and with all the willpower I can summon to withstand the intense pain racking my body, I lean heavily on my walking stick, my body doubled over, contorted in an agony that only I can feel. There are approximately thirty steps between the entrance of the hospital, to the immediate waiting area inside, but I collapse onto the seats immediately. I am desperate for relief, manoeuvring my body onto its side, elongating my spine to temporarily release the chronic pressure throbbing in my back. For a moment, my eyes close, I quietly murmur under my breath for solace to come, as I feel my pain dissolving into my blood, the stabbing-like spurs in my buttocks, the searing, burning electricity travelling down the back of my legs.
Amidst the curious gaze of onlookers, I am acutely aware of their puzzled expressions; they are staring at me, probably unable to comprehend the invisible afflictions that dictate my existence. The urge to justify my presence, to elucidate the intricacies of my disability, momentarily consumes me. Yet, amidst the turmoil of my thoughts, a profound realization dawns—why should I feel compelled to explain the complexities of my condition to strangers? Is it incumbent upon me to justify my right to occupy space, to seek respite from the relentless onslaught of pain that defines my reality? My body, fractured and fragile, rebels against the constraints of societal norms, demanding acknowledgment, acceptance, and above all, compassion.
“But you don’t look disabled.” These were the words uttered to me when I politely asked a pizza delivery person to deliver pizzas directly to my flat door. The notion that a person cannot be disabled because she bears no outward signs of impairment is a fallacy steeped in antiquated stereotypes and misconceptions. “You’re too young to be disabled,” or “You’re simply too lazy to walk” or “But you’re so pretty”, are just some of the narrow-minded beliefs that not only trivialize the experiences of individuals whose disabilities are not readily apparent but also perpetuate harmful stigmas surrounding disability. What relevance does physical appearance hold in determining one's right to claim a disability? To suggest that disabled individuals must conform to a preconceived notion of what disability looks like is not only absurd but profoundly discriminatory. Disability transcends the confines of physical appearance, encompassing a vast spectrum of conditions, impairments, and challenges. The pluviosity of imposing such arbitrary standards serves only to further marginalize and exclude those whose disabilities defy conventional categorization.
In many ways, having a disability almost strips a person of their natural belonging to a certain order of society, an outcast of their imbued citizenship. Like Ghosh,[i] I posit using the social construction of citizenship as the entry point into which persons with disabilities should unequivocally possess of equal rights. Beyond the traditional definition of citizenship encompassing a person’s legal rights and duties under state governance,[ii] I view citizenship as a fluidly dynamic interaction between individual and state, citizenship being the acknowledgment of an individual willing to pursue “the common good of all members of the political community.”[iii] The reality, however, for persons with disabilities, is that whilst we are theoretically endowed with citizenship enabling us to participate in daily life, the proliferation of deep systemic and structural inequalities deny us the right to fully engage in our own citizenship.[iv] This may present in many ways, such as accessing education, healthcare, transportation, and other public services, and participating in equal employment opportunities (amongst others).[v] Of critical notability is the case of the late disability activist, Engracia Figueroa, whose activism centred on challenging societal attitudes and governmental policies that perpetuated inequality and exclusion for persons with disabilities.[vi]
In the United Kingdom (UK), for example, the lack of accessible transportation systems for persons with disabilities is a compounding factor that aggravates further access to services such as employment, education, and healthcare.[vii] Alexiou estimates that only 80 out of 270 London Underground tube stations have some form of step-free access, and certainly, only a small number of these have working lifts. The rising costs of living in the UK and Europe, particularly, point to public transportation being the most cost-effective means of travelling to work, university, clinics, and the like, with at least 65% of disabled people using public transportation at least once a week. In one fell swoop, disabled persons cannot fully exercise their citizenship – work, health, and even play. Even with international conventions such as the Convention on Rights of Persons with Disabilities, and the Equality Act 2010 in place, disabled persons continue to face unequal access to aspects of their daily life, continuously inundated with ableist-fuelled demotion.[viii]
One day, I will be able to walk again, perhaps even run, as able-bodied persons do. That day shall come, but I will be a broken cyborg, a portmanteau of organic and synthetic, of human flesh and fashioned titanium, and my surgeons will surely hope for my own body to fuse with sections of my new artificial spine. I’d rather much be, however, a cyborg much like Donna Haraway’s, where “the breaking down of the boundary between the organism and technology will represent the final conquering of the oppressed body.”[ix] And no more shall our bodies with disabilities be oppressed too.
[i] Debjyoti Ghosh, ‘Invisible Citizens’, Central European University, March 2018, 319.
[ii] Yaffa Zilbershats, ‘The Definition of Citizenship’, in The Human Right to Citizenship (Brill Nijhoff, 2002), 3–5, https://doi.org/10.1163/9789004479517_005.
[iii] Donald Morrison, ‘Aristotle’s Definition of Citizenship: A Problem and Some Solutions’, History of Philosophy Quarterly 16, no. 2 (1999): 143, https://www.jstor.org/stable/27744812.
[iv] Marie Sépulchre, Disability and Citizenship Studies (Routledge, 2020).
[v] Ashrita Saran et al., ‘Effectiveness of Interventions for Improving Social Inclusion Outcomes for People with Disabilities in Low‐ and Middle‐income Countries: A Systematic Review’, Campbell Systematic Reviews 19, no. 1 (21 March 2023): e1316, https://doi.org/10.1002/cl2.1316.
[vi] Flora Renz, ‘The Boundaries of Legal Personhood: Disability, Gender and the Cyborg’, Law and Critique, 18 July 2023, https://doi.org/10.1007/s10978-023-09350-9.
[vii] Gus Alexiou, ‘For Disabled People, Inclusive Transportation Is About Much More Than Lifts And Ramps’, Forbes, 17 February 2021, https://www.forbes.com/sites/gusalexiou/2021/02/17/for-disabled-people-inclusive-transportation-is-about-much-more-than-lifts-and-ramps/.
[viii] Catalina Devandas-Aguilar, ‘Report of the Special Rapporteur on the Rights of Persons with Disabilites: Report on the Impact of Ableism in Medical and Scientific Practice’, 17 December 2019, https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/BioethicsDisabilities.aspx.
[ix] Donna J. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’, in Posthumanism, ed. Neil Badmington (London: Macmillan Education UK, 2000), 69–84, https://doi.org/10.1007/978-1-137-05194-3_10.
