Gaby Sanchez is an independent accessible content strategist specialising in the intersectional issues of disability and other forms of structural oppression as they manifest in the South African context. Sekoetlane Phamodi is a South African activist who works at the intersections of social justice, strategic communications and the law.
November is Disability Rights Month in South Africa. Through the month until 3 December, International Day of the Disabled Persons, disabled bodies are suddenly hyper-visibilised and congratulated, as though it were a birthday, through public relations and window-dressing campaigns run by the same governments, companies, and “organised” disability rights formations that routinely neglect to centre the rights of disabled people through their passivity and industrialisation of our lives, “as a sector,” by the very leaders of the struggle against ableist structural and institutional violence and disabling societal barriers in South Africa. This contradiction was brought sharply into focus, last year, in the Life Esidimeni tragedy where 143 patients with psycho-social disabilities lost their lives as a result of preventable neglect, a failure in public health systems that are designed to serve us and the disposability of our lives.
Some of the most visible campaigns are run in November and, in many cases, adults and children (taken out of school and work programmes in some cases) are bussed to attend events to make up numbers - their bodies and dignities used as politicking tools for more influence and network-strengthening. The “shock factor”, or rather using disabled bodies as visible sites of brokenness and shame, is the go-to method of motivating charitable giving and garnering support for disability-related causes. This is so common and accepted that disabled children who are unable to attend schools, families unable to access proper medical care and disabled women burdened with being the most at risk for violence and abuse are barely being advocated for sustainably and effectively.
In the discussions that take place in the boardrooms of power, in the disability rights sector, we start to see why. “We’re not here to talk about education...people with disabilities need jobs and economic empowerment!”, roared one of the disabled cis-male heavyweights in the sector, as we were forming the programme for a significant national disability rights and development conference. A confounding statement, as most disabled children in South Africa struggle to gain at least some basic access to an education; an education that would better prepare them to make use of adult work and skills programs and jobs. “Shut up, no one needs your opinion”, barked a government disability rights coordinator at a female colleague, as she attempted to make a programme-content input.
This is not new in the sector. In fact, this unashamed misogyny and violence towards women in the movement was, itself, received from the organising cultures of the United Democratic Front movement as far back as the 1980’s at a critical turning point of anti-apartheid resistance in South Africa, and stalwart activists in the movement were establishing Disabled People South Africa. Disabled women and mothers of disabled children have been undermined and their input and radical strategies undermined because they didn’t conform with and submit to their male comrades. These stalwarts are now the sector-heavyweights in charge of the largest and most recognised disability rights organisations. They define and guide the agenda and work of national and provincial governmental departments to respond to our particular needs, and they enable us to participate fully and meaningfully in the shaping of our national socio-political, economic, and democratic development. It’s a powerful place to be in, indeed. For many of them, still, the dissenting voices of womxn and queer activists have little place in the coordination of the sector’s hard-work, and are dislocated from any clearly defined kind of political movement.
The corporate structured and donor-dependent NGO-isation of our struggles has a significant role to play in the reduction of our lives into single-issue struggles. How can we challenge the overlapping structural systems of oppression, when we adopt and actively participate in hierarchical ways of organising - the very same ways of organising that depend on and crowd out any acknowledgement of the complex ways in which patriarchy, capitalism and white-supremacy intersect with and reinforce ableism? This is well-evidenced, in the disability sector, by how many powerful organisations are governed by white men and, in some instances, non-disabled people. In a country where the majority of disabled South Africans are also Black and poor, it is astounding how the fight for funding and power has not paved the way to inclusion and accessible medical and educational opportunities, but rather to the unequal power distribution and lack of skills-sharing and development within organisations.
Because of this, we find ourselves trapped-in and regurgitating the same prejudiced and exploitative discourses about how we see and locate ourselves as political beings holding multiple subjectivities and living diverse realities. So much of the established narrative is focussed on proving our worth to ableist culture and systems, proving we are worth acknowledgment through the supercrip notion of “ability," and how we can overcome or ignore our impairments because our production, however different, in society is worth something. Rarely do we see awareness campaigns challenging the notion that we are only deemed worthy as disabled people if we can prove that we have certain non-disabled qualities. Our lives and our existence are never just enough and this has been at the core of ableist violence.
The problem is that no true and extensive transformation has taken place within ourselves first, no unlearning. We should be unashamedly confronting and celebrating the inextricable link of body and identity through experiences as a powerful tool to transform narratives and spaces, both mainstream and from within other marginalised communities. What we mean, and Eli Clare describes this so well in his lecture Stolen Bodies, Reclaimed Bodies is that the "external forces of oppression are the incredibly internal, body-centred experiences of who we are and how we live with oppression.”
What has been interesting to observe over the last decade, with the speedy rate of technological advancement and the rise of social media access, has been the use of technology to confront and celebrate, simultaneously and for personal visibility and sharing of experiences, of connecting to others. Social media has given those with varied physical and non-physical disabilities the opportunity to learn from others and to receive support and solidarity, and it has also given them tools to not only advocate for their own better quality of life, but for others too. True transformation begins with defining our bodies ourselves, and for ourselves. The mycelial network that is the internet is rapidly enabling us to find one-another, grow the movement with each other and make possible the world we dream for one another.
We see this around the globe: from the long-standing radical work of ADAPT, and #CripTheVote in North America, to disabled social justice activists in Bolivia, who have complemented their direct action with technology-driven campaigns to mobilize, educate and resist. For those of us who have been unable to stay the course in trying to find community in the ineffectual establishmentarian sector, we are now discovering and beginning to build communities that infuse our politics in our practice, and centre anti-ableism within the political discourse instead of adjacent to it. It is changing how we imagine and connect our activisms. We are Sylvia Plath’s mushrooms.
Mushrooms
Overnight, very
Whitely, discreetly,
Very quietly
Our toes, our noses
Take hold on the loam,
Acquire the air.
Nobody sees us,
Stops us, betrays us;
The small grains make room.
Soft fists insist on
Heaving the needles,
The leafy bedding,
Even the paving.
Our hammers, our rams,
Earless and eyeless,
Perfectly voiceless,
Widen the crannies,
Shoulder through holes. We
Diet on water,
On crumbs of shadow,
Bland-mannered, asking
Little or nothing.
So many of us!
So many of us!
We are shelves, we are
Tables, we are meek,
We are edible,
Nudgers and shovers
In spite of ourselves.
Our kind multiplies:
We shall by morning
Inherit the earth.
Our foot's in the door.
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