In-admissable Grief: Part II

On grief and anger

It ripples, it shudders, it smacks high tide waves against wet sand or maybe it’s that impenetrable oil like viscose material, short but frightening silence which falls when even the dogs cease to bark and the last reveller has stumbled home from the corner shebeen on Makhuba Street Khayelitsha[1]…these are just some of the images which flit through my mind as I try to describe for myself, the various ways in which anger attempts to verbalise, find a route, a space through grief and loss.

I started writing this piece before the massacre in Garissa Kenya, before commemorations of the genocide in Rwanda began, before one year of remembering, honouring the lives of the missing girls of Chibok Nigeria and before the wave of renewed brutality against foreign nationals living in South Africa.

I found an un-feeling, numbness creeping over me as I attempted to write about another inadmissible – the right to feel, admit, acknowledge anger when grieving and experiencing loss. I chose to set this piece of writing aside, to travel to foreign parts and wait a while before returning to it and in a way, that path felt, feels the right one.

Waiting in anger. Permitting oneself the un-feeling which comes from feeling too many feelings and simply to Be. It reminds me so much of the spring tides, a time when we see so little on the surface of the sea and yet, beneath the surface immense turbulence in a continuous rolling rhythm and movement which dredges, shifts sands, birthing life giving forms even as it changes the shape of the unseen and destroys in its wake.

And my thoughts turned to how we somehow, in our desire and search for ‘happiness’ and ‘closure’ sprint away from that which is its opposite, rush towards what we call ‘healing’ and refuse to open ourselves to the vastness and complexity of living within contradiction. To accept and embrace that one loss triggers memories of another, that the pain experienced through living lives that are not valued, perceived to be less than, the daily loss of self so deeply embedded in injustice and prejudice compounds and fractures grief. And that anger is sometimes necessary just to get through a day, a time, igniting the simple act of getting up and out of bed, going to work and maybe, walking a protest march.

I am reminded of the Elder in one of the HTMO workshops who needed to return to her Life Cycle drawing again and again as she traced all of the incidents which layered the feelings of anger at the recent loss of her granddaughter and her daughter to AIDS. The ignorance and incompetence of doctors with respect to her granddaughter, the lack of provision of ARVs for her daughter through state ineptitude, the loneliness in her grief when society and the church could find no place for her anger. And the inability of one of her peers to simply listen, quietly provide her the space to articulate this anger, hurrying to appease and silence her.

And this time, I turn to the words of Sisonke Msimang, awesome intellectual, activist, writer in an almost, but not quite not, unrelated post about the reverberations of difference, change and disharmony and its place in society in South Africa.

“We have lived with choreographed unity for long enough to know that we now prefer acrimonious and robust disharmony. We see reconciliation as part of a narrative that was constructed on the basis of anxieties that are no longer relevant: Democracy has taught us that raised voices don’t have to lead to war. This may not feel good, or even comfortable. And it does not offer the peace many black South Africans imagined 20 years ago. Nonetheless our impatience for justice is a new kind of hope; a sign that green shoots may yet emerge from the ruins of the rainbow nation.”

And in her words I seek and find the wisdom to know that anger has its place. Difference, disharmony born of a seeking for something – justice, answers, resolution or even, closure is required for new growth. That raised voices in anger ‘don’t have to lead to war’. That truthfulness is the undercurrent which precludes walking a path of healing.

[1] A place I called home for a period in my life

Deirdre Prins-Solani is the Project Manager of Healing through Memory and Objects- a pilot project of the Museum of AIDS in Africa to help people overcome their grief over the loss of a loved one, through personal and collective story-telling and ‘object therapy’

The politics of representation: Narratives of HIV in Africa

Since its emergence HIV has incited fear and stigma for those who suffer from the disease and communities most affected by it. This has in part been due to the spread and devastation that has come from HIV-related deaths and the misconceptions around HIV. Numerous campaigns attempting to re-articulate the meaning of HIV have been effective in as far as making the connection between risky behaviours and the actual disease; as such, the use of condoms in most parts is seldom considered taboo.

HIVAIDSNegativeStigmaofSociety1

However positive, this is a milestone that has been reached with a lot of contestation and negotiating. Some have argued that messaging around HIV prevention and information has been imbued with cultural insensitivity and heteronormativity. Through this, stereotypes are perpetuated and regenerated about people. In doing a simple google search with the words HIV and South Africa or America the faces and narratives that come up are often quite different. Beyond the infographics that appear, faces within African settings are seen in the poorest conditions, nearing their death. This is in stark contrast to the smiling American who is “healthy and positive.” This is not to say that all images follow this pattern but simple geographical pairing with the word HIV gives very distinct messages around HIV and what it means.

This begs the question, how do we provide realistic narratives that maintain the dignity of those affected by the disease? This question delves deeper into notions of power and class which are quite intricate and political; however, they need to be asked. It is only in recent years that the ethics of representing patients on media platforms has become a topic of discussion. Although policies have been developed in order to protect the individuals on HIV campaigns and messaging, the power dynamics between the photographer and the subject are often not questioned. Most often it seems major development agencies are absolved from these ethical restrictions and one often sees the same images regenerated, the same faces representing disease.

Middle class representations through the use of celebrities like Criselda Cananda or Magic Johnson are an attempt to defuse the narrative of devastation linked with HIV, but this has further perpetuated the narrative of devastation for those that are poor and black. Dominant biomedical perspectives have also fuelled this perspective of disease whereby people are seen as “diseased people” not people with a disease, which further creates feelings of disempowerment for patients who are HIV-positive. Although some may argue that optics do not matter in dealing with epidemics, it matters when it fuels fears among people and does not help people understand the disease for what it is.

In representing various narratives we need to consider intersectionality when it comes to the subjects we are representing. As a photographer for example one would need to consider the emotional scarring and violence that comes with showing a family member dying in a society where death is a private and sacred experience. Similarly, how does one portray the realities on HIV and gender disparities without perpetuating the violent narratives of black masculinities?  Lastly, how do people telling the stories and experiences of HIV dealing with their own positionality and power?

The politics of representation of diseases and people’s experiences of disease as they stand are undoubtedly problematic and need to be interrogated as these often fuel fires around stigma and stereotypes towards certain populations.

Thoughts on In-admissable Grief: Part One

by Deirdre Prins-Solani

Deirdre is the Project Manager of Healing through Memory and Objects- a pilot project of the Museum of AIDS in Africa to help people overcome their grief over the loss of a loved one, through personal and collective story-telling and ‘object therapy’

I have been thinking much about inadmissible grief. The kind of grief which is “not allowed”. “Not allowed”; to be articulated, felt, acknowledged for the loss of a loved (or unloved) one. And the very many ways in which we regulate and have our right to loss and grief measured and deemed justified along a continuum. Black body, white body, all kinds of bodies in between, multiple losses over time, losses in one tragedy, the horror of the inexplicable or the sameness of illness followed by death, man or woman, baby or child…and in my wandering I have been thinking through what happens to the grief. Of course, I turn to poetry, this time – Langston Hughes in Harlem and for every ‘dream deferred’ I add, ‘grief’;

Harlem

BY LANGSTON HUGHES

What happens to a dream deferred?

Does it dry up

like a raisin in the sun?

Or fester like a sore—

And then run?

Does it stink like rotten meat?

Or crust and sugar over—

like a syrupy sweet?

Maybe it just sags

like a heavy load.

Or does it explode?

Langston Hughes, “Harlem” from Collected Poems. Copyright © 1994 by The Estate of Langston Hughes. Reprinted with the permission of Harold Ober Associates Incorporated.

And I think back to Participant X who was ‘not allowed’ to participate in the burial ceremony for his Beloved, nor Participant Y, who could not wrap her head around the loss of her young child as it came a week before the arrival of a new born baby and how for years, they carried in their bodies unexplained aches, inexplicable bouts of anger and a sophisticated ability to not see the ghosts which shadowed their every other joy and sadness.

And in doing so, realising that one of the gems which the ‘healing through memory and objects’ work process does catalyse, is to affirm an individual, a family or a communities right to grieve[1]. And to reiterate the need for non-judgement, particularly of self that internalised red devil and in so doing, granting oneself the permission to grieve.

[1] And to grieve without the ‘but’ or ‘maybe’, ‘should have’ or ‘could haves; which comes with rationalisation and censure

To comment or ask a question please contact Deirdre:

deirdreps [at] museumofaidsinafrica.org