Disability Justice, Race, and Rethinking Ableism - by Dr Khairani Barokka

Picture description: Black and white photo of an Indonesian woman with short hair, earrings, and a patterned dress, lying down on her front, pen in hand, ready to write. Picture credit: Derrick Kakembo.

Khairani Barokka is a Minang-Javanese writer, artist, and editor from Jakarta, based in London, whose work is presented widely internationally. She is Editor of Modern Poetry in Translation, co-editor of Stairs and Whispers (Nine Arches), and her latest book is Ultimatum Orangutan (Nine Arches), shortlisted for the Barbellion Prize.

“As a disabled migrant who is not allowed access to any UK public funds, ‘disability rights’ has never applied to me here, and when UK citizens call for disability rights, very rarely is thought or advocacy given to those many of us who are migrants and barred from those rights.”

The term ‘disability justice’ was coined by Sins Invalid, a artist collective of queer crips of colour, as a term that reflects paradigms beyond ‘disability rights’. The latter is something I associate with what neoliberal nation-states bestow upon their citizens, rather than recognising the interconnectedness of all peoples under colonial capitalist cisheteropatriarchal ableism. As a disabled migrant who is not allowed access to any UK public funds, ‘disability rights’ has never applied to me here, and when UK citizens call for disability rights, very rarely is thought or advocacy given to those many of us who are migrants and barred from those rights.

As Sins Invalid conceived it, disability justice contains understandings of disability and ableism that are distinct from white, male understandings of it. The ten principles of disability justice include anti-capitalism, and are tied to a definition of ableism that is more aligned with my colleague Talila Lewis’ working definition of it (last updated January 2021, as follows, ‘*developed in community with Disabled Black and other negatively racialized people, especially Dustin Gibson’):

‘A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion and/or their ability to satisfactorily [re]produce, excel and "behave." You do not have to be disabled to experience ableism.’

 “Our understandings of what ableism is, as people from what I prefer to call the majority world (not the white minority), are intertwined with our ongoing communal histories of surviving violence. Justice, and reparative work, are thus crucial to our conception of disability.”

Before I read Talila’s astute writing on this, I was already well aware of ableism’s ties to colonialism, imperialism and capitalism—being Javanese, I come from a culture that has disabled gods. My colleague Slamet Amex Thohari’s work shows how our former status as closer to the divine and cared for was brutally eliminated by Dutch missionary hospitals, that instituted the colonial ableist model, and determined all ‘difference’ should be eliminated. This systemic ableism that continues to devastate millions of lives in modern-day Indonesia, has colonial roots. The slavery and violence wrought by the Dutch East India Company (the world’s first megacorporation, run by the Dutch state), with this ableism as a key tenet, was all done in the name of capitalism and profit.

Thus our understandings of what ableism is, as people from what I prefer to call the majority world (not the white minority), are intertwined with our ongoing communal histories of surviving violence. Justice, and reparative work, are thus crucial to our conception of disability from this standpoint.

Jasbir Puar’s book The Right to Maim highlights how Western neoliberal societies’ moves towards ‘inclusion’ go alongside imperialist violence in places like Palestine and Ferguson, which creates more disabled people in societies lacking the infrastructure to support them. This is a key example of how disability justice as a concept encompasses such contemporary realities.

 As disabled people of the majority world, we are also well aware of how race, sexuality, gender, and disability are all socially fluid categories—in terms of how hegemonic culture defines them, and in terms of how the people applied various labels by white supremacist colonial capitalism work within them. It was not so long ago in the UK that homosexuality was deemed a psychological disorder, and subsumed under disability categories, as a difference to be eliminated. The homophobia that remains as colonial legacy, in societies around the world, is intertwined with how ‘disability’ is determined by the state—and ‘race’ as a concept that has also been colonially imposed is inextricable from that.

“Conceptions of race and disability are always intertwined, and work such as Subini Annamma’s The pedagogy of pathologization: Dis/abled girls of color in the school-prison nexus show the devastating effects of this interconnections under white supremacy.”

Increasingly, incredible work is being done by scholars of colour around the world that examines the construction of ‘disability’ as affected by white supremacist imperialism. In the US alone, books by Black scholars such as Theri Pickens’ Black Madness :: Mad Blackness, Sami Schalks’ Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women's Speculative Fiction, and LaMarr Jurelle Bruce’s How to Go Mad without Losing Your Mind: Madness and Black Radical Creativity highlight how conceptions of race and disability are always intertwined, and work such as Subini Annamma’s The pedagogy of pathologization: Dis/abled girls of color in the school-prison nexus show the devastating effects of this interconnections under white supremacy.

            In the UK, according to a 2016 Papworth Trust report, white adults are most likely to report impairments, even though there is ‘evidence that Indian Asian people are significantly more likely to experience higher rates of disability than Europeans’, and their 2018 report shows Black adults ‘with an impairment […] report the highest number of life areas (for example, education or leisure) in which participation is restricted, while adults from white ethnic backgrounds report the lowest.’ Further, they’re ‘more likely than other people to have difficulty finding and using appropriate services, and are more likely to experience poor outcomes’.

            Underreporting of disability by Black and other majority world disabled people is likely due, in my estimation and lived experience, from multiple overlapping violences with regards to colonial capitalist cisheteropatriarchal ableism. In this ongoing Covid-19 pandemic, we are the most vulnerable and continue to be the most impacted.

“Disabled people of the majority world need to be platformed, centered, and given leadership positions.”

            In literature as an industry, such intertwinings manifest in innumerable specific ways, ways that are too often imperceptible to white disabled people—a key reason why disabled people of the majority world need to be platformed, centered, and given leadership positions.

            For literature endeavours involving people from various backgrounds, including nationality, it is important to note that ‘disability’ and ‘D/deafness’ are translated very differently from language to language, from culture to culture, and these pluriversal definitions are intertwined with paradigms for ‘race’ and ‘ethnicity’ that may well be different from that of Western countries. Elements such as casteism, racial hierarchies and configurations such as the Chinese-Indian-Malay triangulation in Malaysia, and different colonial histories all contribute to this. This diversity of contexts for disability above means one can never be truly 'comprehensive' when it comes to disability terminology, in terms of international and multilingual events and indeed in terms of cripnormativity itself.

“Citationality and true care, with regards to disabled people of colour and our ideas, is vital, particularly in an extremely white-dominant literary industry.”

            All of the above is why I love researching disability from a disability justice perspective, to contextualise my own experiences with violence. To understand that I am not alone, that around the world are disabled people of the majority world striving for the same goal of justice. It is why citationality and true care, with regards to disabled people of colour and our ideas, is vital, particularly in an extremely white-dominant literary industry. 

Sources: 

•    Annamma, S. A. The pedagogy of pathologization: Dis/abled girls of color in the school-prison nexus. Routledge, 2017.

•    Bruce L. M. J. How to Go Mad without Losing Your Mind: Madness and Black Radical Creativity. Duke University Press, 2020.

•    Lewis, T. ‘January 2021 Working Definition of Ableism’. January 1, 2021. https://www.talilalewis.com/blog/january-2021-working-definition-of-ableism.

•    Papworth Trust, Facts and Figures 2016: Disability in the United Kingdom. Papworth Trust, 2016.

•    Papworth Trust, Facts and Figures 2018: Disability in the United Kingdom. Papworth Trust, 2018.

•    Pickens, T. A. Black Madness :: Mad Blackness. Duke University Press, 2019.

•    Puar, J. K. The right to maim: Debility, capacity, disability. Duke University Press, 2017.

•    Schalk, S. Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women's Speculative Fiction. Duke University Press, 2018.

•    Thohari, S. A. Disability in Java: Contesting conceptions of disability in Javanese society after the Suharto regime. LAP, Lambert Academic Publishing, 2013.