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CFS Mental Health Politics

Accessibility in Activism

Telling people to stop tweeting about political causes and translate their activism into direct action may seem like a good suggestion, but you might be spreading unintentionally ableist ideas. There is a good sentiment behind calls to more physical forms of protest, but bear in mind that these are not accessible to everyone. Here is an essay I wrote for my Gender Studies class on the intersection of disability and feminism, though it applies to many other areas of social justice.

The relationship between disability and feminism is vast and multifaceted, with many intersections between the two areas of discourse. This essay will explore theoretical links between the oppression and marginalisation of both women and those with disabilities, as well as practical concerns in terms of fighting for these causes. Practical concerns regard the exclusion of less-able bodied people from social justice movements such as feminism, specifically in cases of physical protest. This forces a re-evaluation of theory in its strategizing stage: what tools can we use to make our visions for change a reality? How can we make these tools accessible?

Different contributions to disability feminist theory bridge the two topics in different ways. Garland-Thomson gives an extended account of how the combined discourse has changed and developed throughout history, with a recurring focus on how both disabled people and women are subordinated based on physical characteristics (Garland-Thompson, 1557). Both groups diverge from deeply entrenched ideal of the able-bodied, male individual and they are deemed weaker and less worthy, forcing them down the social ladder. Garland-Thomson explains that just as feminism challenges conceptions of femaleness as ‘deficiency’, ‘feminist disability studies similarly questions our assumptions that disability is a flaw, lack, or excess’ (Garland-Thompson, 1557). Furthermore,  ‘female biology and feminine ideology’ have even been presented as a form of disability, Aristotle labelling women as ‘mutilated males’ (Garland-Thompson, 1563). This demonstrates how women and disabled people are harmed by the same oppressive forces, and how important it is for feminism to acknowledge this, so that the injustices may be fought side by side. Garland-Thomson explains that ‘disability proves to be an especially useful critical category’ for improving feminist theory, drawing attention to intersectionality and conceptions of identity (p. 1558).

While Garland-Thomson’s piece provides pertinent insight into the historical oppression of both women and disabled people, it is necessary to move beyond this theoretical stage and consider current manifestations of such oppression. Sick Woman Theory by Johanna Hedva is a powerful article that combines theory with Hedva’s own lived experiences, as well as other current issues. As a member of the LGBTQ+ community, as well as a valiant supporter of other social justice movements, Hedva discusses the challenge of wanting to participate in protests while often being physically unable to do so due to their illnesses often rendering them bedbound. They compare this to other groups of people that might be excluded from public protest: those that must stay in work or risk being fired; or, especially in the case of the Black Lives Matter protests of 2014, those that may be targeted by police brutality and the threat of incarceration. While these causes of non-participation affect different groups for different reasons, they both reduce numerous individuals to ‘invisible bodies’, as they struggle to be seen or heard (Hedva). This is of great relevance to feminist theory, which has gradually become more inclusive in each new wave, but must continue to work towards greater inclusivity still.

Johanna Hedva by Pamila Payne, from http://www.maskmagazine.com/not-again/struggle/sick-woman-theory

Hedva explains their longing to participate in protests such as the Black Lives Matter protests, which peaked when Hedva was particularly unwell. They watched as people took to the streets, and ‘attached to the bed, [they] rose up [their] sick woman fist, in solidarity’. This despair of being unable to participate in activism is an issue that does not seem to command a great deal of public attention, although it is widely documented and familiar within disabled communities. For example, the group #MEAction is dedicated to improving awareness and support for people suffering with myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, who often struggle to campaign themselves. The primary symptom of this disease is ‘post-exertional malaise’, even if exertion is minimal, and though its severity can greatly vary, it renders ‘25% of patients housebound or bedbound and an estimated 75% unable to work’ (ME Action). Even for ME sufferers with higher capacities, as with the chronic illness Hedva suffers with, ‘life is reduced to a relentless rationing of energy.’ Hedva uses economic language to explain this struggle, explaining that chronically ill people have ‘limited funds’ of energy and they are confronted with heavier ‘costs’ for their activities. They refer to such people as ‘fellow spoonies’, referencing Miserandino’s Spoon Theory, an analogy for the rationing of energy. Miserandino, who suffers with Lupus, explains that each day she has a limited number of ‘spoons’, and even minor activities can cost one. The symbol of the spoon is insignificant, the point is that there is a finite number of them. As Miserandino explains, using an extra spoon one day is a spoon taken from the following day, perhaps twofold. When people struggle with daily tasks that for many do not even require a second thought, it is inevitable that this will impact secondary commitments such as political participation. This is summarised in Hedva’s simple question: ‘how do you throw a brick through the window of a bank if you can’t get out of bed?’.

Millions Missing demonstration in Washington, DC. Photo by Mary F. Calvert. From http://millionsmissing.meaction.net/

Feminists must take these considerations into account in all aspects of our movement. This includes listening to disabled people; raising their voices and better representing them. It includes making calls to action more accessible and inclusive, as well as better reflecting disabled people in our words and theory, and not excluding them inadvertently. Here we might return to Garland-Thomson’s commentary on the overlapping subordination of the female and the disabled bodies. Although the link between #MEAction and feminism might not be immediately obvious, beyond participation in feminist action for people with ME, we must recognise their shared experience of being ‘less-than’ (Hedva).  This is pertinent to Hedva’s Sick Woman Theory and the reason they call it such. Hedva explains that it is not just about women, which has ‘erased and excluded many’, but rather about the specific experience of female oppression. The words Sick Woman emphasise how both these demographics are inferiorised,  ‘it still represents the un-cared for, the secondary, the oppressed, the non-, the un-, the less-than.’ Hedva maintains that this label does not just apply to women, but ‘is an identity and body that can belong to anyone denied the privileged existence’.

In order to make the feminist movement, and indeed any social justice movement, accessible to anyone who identifies with the Sick Woman experience, we must first understand exactly how the movement is currently failing them. As Hedva and #MEAction indicate, the problem lies mainly in visibility. Just as women have historically been denied a platform and audience, disabled people continue to be side-lined, especially the invisible bodies that struggle to leave the house. This only amplifies the invisibility that many disabled people already struggle with when their condition lacks visual clues, such as ME. The #MEAction group addresses this directly in their #MillionsMissing campaign, so called after the millions of sufferers who are too ill to protest and stay hidden from the public eye.

 This calls into question the dichotomy of the public and private sphere. In the 1950s, Hannah Arendt’s claim that politics is defined by our public existence made progress in breaking down barriers to political influence. By challenging the gatekeeping nature of the formal legal system, Arendt pushed for more accessibility in politics. However, her interpretation of accessibility was insufficient. As Hedva explains, Arendt’s claims emphasised the idea of a distinct public and private sphere, which renders those who struggle to enter the public realm as inherently a-political and suggests that there is no political underscoring to issues that individuals face on a personal or private level. In fact, the opposite is true: we most likely encounter broad political problems when they manifest in daily occurrences. Furthermore, the public/private binary upholds power relations, as the public realm is somewhat guarded. As Hedva explains, ‘Arendt failed to account for who is allowed in the public space.’ This inspired the radical feminist movement of the 60s and 70s, characterised by the phrase ‘the personal is political’ (Napikoski). These feminists emphasised the political element of personal relationships, especially in instances such as domestic abuse. We must apply the same logic to disabled people, as many are unable to participate in campaigns that directly affect them.

Painting by Elizabeth McGillis Drayna.

However, when Hedva states that disabled people lack visibility ‘in any traditional capacity’, they imply that there are other, non-traditional ways to be seen, opening the question of how we can achieve this. An article by Amnesty International, How to be How to Be an Activist When You’re Unable to Attend Protests, provides a list of ideas for other forms of participation that we should emphasise in support for those excluded from marches and rallies. Their suggestions include researching and sharing information; not underestimating the influence of one-to-one conversations; volunteering based on one’s skillset where possible; being active on social media; contacting officials as an alternative form of direct action; making donations to charitable organisations; and even demanding that physical protests be made more accessible. Some of these actions have been made possible by technological advances, namely the internet and social media. Journalist Samantha Chavarria also highlights the importance of virtual protest for disabled people, explaining that ‘thanks to the convenience of the internet, activists are able to fight the good fight anywhere there is a wifi connection, as opposed to risking a journey that not all can easily make.’ The issue, though, is that we must give virtual activists the credit they deserve, and challenge criticism that they are not ‘ true freedom fighters’ (Chavarria). Phrases like ‘slacktivism’ and ‘armchair activism’ have been employed to condemn people who focus all their political energy online and not elsewhere, dismissing the effort it might take many people to even participate in virtual activism. Furthermore, it underestimates the potential influence of social media, where users can often harness a bigger audience than they would on the streets. While able-bodied people might benefit from encouragement to partake in physical protest, these calls to action must demonstrate a better awareness of the disabled community. In conclusion, disability feminism is a rich and topical area of study. Understanding how the experience of women and the disabled community relate allows us to better unpack the oppression that these groups face and strategise for fighting both simultaneously. The feminist movement must accommodate disabled individuals, because as disability activists have explained, ‘social justice movements will only be effective when they are inclusive of everyone’ (Amnesty International). To fight the power structures that impose on the Sick Woman, whatever their gender and whatever their sickness, we must work together in ‘a radical kinship, an interdependent sociality, a politics of care.’


Works cited:

Amnesty International USA, How to Be an Activist When You’re Unable to Attend Protests, Teen Vogue (2017), available at <https://www.teenvogue.com/story/how-to-be-an-activist-when-youre-unable-to-attend-protests&gt; accessed November 18, 2019

Arendt, H., The Human Condition (Chicago: University of Chicago Press, 1958)

Chavarria, S., For people with disabilities, the internet makes protest accessible (2018), available at <https://hellogiggles.com/lifestyle/people-with-disabilities-internet-protest/&gt; accessed November 18, 2019

Garland-Thomson, R., Feminist Disability Studies, Signs 30:2 (The University of Chicago Press, 2005), pp. 1557-1587

 Hedva, J., Sick Woman Theory (2015), available at <http://www.maskmagazine.com/not-again/struggle/sick-woman-theory&gt; accessed November 18, 2019

ME Action, #MillionsMissing, available at <http://millionsmissing.meaction.net&gt; accessed December 10, 2019

Miserandino, C., The Spoon Theory, But You Don’t Look Sick (2003), available at <www.butyoudontlooksick.com> accessed November 18, 2019

Napikoski, L. The Personal Is Political, ThoughtCo. (2019), available at <https://www.thoughtco.com/the-personal-is-political-slogan-origin-3528952&gt; accessed December 13, 2019

By Matilda

Hello! My name is Tilly (Matilda) and I am a 21-year-old student at the University of Sheffield, studying Politics and Philosophy. My blog is heavily influenced by these subjects, as well as by the arts in a larger sense. I enjoy making and consuming art - whether that be drawing, painting, poetry, or film.

My creations are from the perspective of a #spoonie. My invisible illness is ME/CFS, and I sometimes write about that too.

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