For this session we read:
- Audre Lorde, ‘A Burst of Light’ (1988), pp.40-41, pp. 94-98, and pp.110-133 in A Burst of Light and Other Essays (New York: Ixia Press, 2017)
- Joanna Hedva, ‘Sick Woman Theory’, Mask Magazine (2016)
- Robert McRuer, Crip Times: Disability, Globalization, and Resistance (New York: NYU Press, 2018), pp.1 – 24.
Eleanor Lisney from Sisters of Frida joined us for this session on Disability + Resistance. Eleanor is a co-founder of Disabled People Against Cuts (DPAC), a group that formed in 2010 to fight austerity cuts and their disproportionate impact on disabled people. She also co-founded Sisters of Frida, an experimental collective of disabled women, in 2014. The group campaigns for disability and women’s rights, and is also a space for discussion and sharing experiences – Sisters of Frida seeks to build network(s) of disabled women.
Eleanor sees two ways of performing political resistance: one is grassroots action – going out onto the streets and causing disruption. The other, she says, is by influencing policy through NGOs, by going to UN conventions and shaming the UK government. It’s important to think about the accessibility of different kinds of protest, particularly the kinds of actions that involve physical presence on the streets and that risk violence from the police and as hate crime from bystanders. One of DPAC’s 2015 protests against the rolling out of Universal Credit, for example, saw disabled protesters and their PAs and allies punched and violently restrained by the Metropolitan Police.
Johanna Hedva’s ‘Sick Woman Theory’ starts from a question around presence and political action. Writing the article during the Black Lives Matter protests in late 2014, they describe hearing the action from their room, unable to attend because of a chronic condition, endometriosis, that intermittently renders them unable to walk, drive, or do their job, for five months at a time. Hedva asks what modes of protest are afforded to sick people, and talks about ‘invisible bodies’ during protests and direct actions, who may not be there in presence but whose fists are up along with those physically present at the march or demo.
It’s important to think about other ways of being present. Eleanor explained to us that DPAC were the first group to set up online protests, which allowed disabled people to send a message to those physically present at a march, and a pin with the message would be dropped on a map at the place and time it was sent. While this isn’t infallible – lots of disabled people can’t easily access computers and social media – it still offers new ways of thinking about protest and presence. Access is a part of resistance; you can’t fight back if you are not included. Eleanor asked us to think about whether we notice who isn’t in the room, which touches on Hedva’s notion of invisible bodies. As Eleanor reminded us, for some people, just surviving each day is resistance.
As a group we discussed the impossibility of clearly dividing racism, sexism, and ableism. Eleanor described how she is ‘invited to many tables’ because of her various identities as disabled, as a woman, and as a person of colour – and yet she says she never sits properly at any of those tables, she is still an outsider. There are different cultural responses to disability and often you can feel like you don’t belong to any of the activist communities you are a part of. In Audre Lorde’s ‘A Burst of Light’, Lorde weaves her experiences of resisting cancer into other forms of political resistance – as she says, ‘[b]attling racism and battling heterosexism and battling apartheid share the same urgency inside me as battling cancer.’ For Lorde, her ‘cancer is as political as if some CIA agent brushed past me in the A train on March 15, and air-injected me with a long-fused cancer virus. Or even if it is only that I stood in their wind to do my work and their billows flayed me. What possible choices to most of us have in the air we breathe and the water we must drink?’ Lorde emphasises the disproportionate impact that cancer has on people of colour and poor communities in the US, and critiques the political ideologies underpinning decisions around, for example, access to healthcare.
My cancer is as political as if some CIA agent brushed past me in the A train on March 15, and air-injected me with a long-fused cancer virus. Or even if it is only that I stood in their wind to do my work and their billows flayed me. What possible choices to most of us have in the air we breathe and the water we must drink? (Audre Lorde)
Sisters of Frida was started out of a recognition of the intersecting oppressions that disabled women experience. Disabled women have specific experiences and needs that are often not addressed in women’s or disability activism. The group is a peer support group as well as a campaign group – it aims to educate around but also act as a discussion group for disabled women. The NHS, for example, is often not prepared for the health needs of disabled women (for example, of conducting smear tests). There is also a common view that disabled women are asexual, which is untrue and infantilising. It is also a dangerous stereotype that enables the perpetuation of abuse. Disabled women are twice as likely to experience gender-based violence as non-disabled women, yet they’re less likely to seek help. Something that Sisters of Frida work on, for example, is sex education for disabled girls to increase young people’s chances of recognising abusive behaviour, and of ways to deal with it.
In previous sessions, we have discussed the relationship between disability and mental health – Margaret Price’s concept of the ‘bodymind’ counters the Cartesian divide of mind and body expresses instead their interrelation, and physical and cognitive disabilities – and the ways society treats those with them – can have a harmful impact on mental health. Hedva argues that the ‘most anti-capitalist protest is to care for another and to care for yourself’ and this refashioning of Lorde’s insistence that ‘caring for myself is not self-indulgence, it is self-preservation, and that is political warfare’ refocuses on the radical potential of selfcare – a term and deflect responsibility for mental and physical wellbeing onto the individual rather than institutions and the state. Hedva says that we must ‘take seriously each other’s vulnerability and fragility and precarity’. Capitalism is about production but Hedva’s article is all about survival and care. These ideas counteract common and dangerous stigmas and conceptions around disability. In the UK, for example, people who receive benefits are often perceived as a ‘drain on the state’, which enforces a sense that if you are not going to ‘pay it back’ then it’s not worth supporting you. When your worth in the eyes of the state is reliant on your productivity and conformity to particular norms, is the act of survival as a disabled person an act of resistance?
The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community. A radical kinship, an interdependent sociality, a politics of care. (Johanna Hedva)
Talking about the difficulty of getting seen and heard, we discussed how Brexit is distracting all attention in the media and making it even harder for disabled people to get noticed. The media are so obsessed with Brexit and Trump, they are ignoring all of the people who are in need. Discussing the role of social media in activism, we thought about how thinking that social media is somehow ‘ruining’ activism, which is a belief held in some activist circles, is a privileged position – for lots of people, online is the first place you can be heard or visible. For lots of disabled people, social media can be the only means of connection with other people and an important place to get peer support. However, there is a danger that social media erases the real suffering people are experiencing, and bullying is a problem online too.
There are also contradictions in lots of activist campaigns. For
example, there is a huge emphasis on going plastic-free within climate change
activism, without a recognition of the ways that this invalidates disabled
people’s ability to do things for themselves. There is a neoliberal idea that
everyone should be responsible for themselves and yet disabled people can’t be
responsible for themselves. They expose the myth of independence and the
impossibility of truly individual lives. Lots of climate change activism is
very masculinist and aggressive. With, for example, the anti-fracking campaign,
lots of people at the camps on the frontline have severe mental health issues
and the impact of the stress of protesting on their mental health is often not
taken into account. Lots of activist spaces are not themselves reflective of
the ideologies they espouse. Unity is promoted without a real, critical
understanding of what that means.
 Lorde p. 115.
 Lorde pp. 118 – 119.
 Lorde p.130.