Making Visible the Invisible

Too many times in my life I feel invisible as people can’t see the truth of who I am through their own blinding assumptions.  My blog deals with issues of power and privilege – who gets to tell stories and how those stories get to be told.

My blog attempts to make visible the invisible; hosting difficult conversations to reveal invisible identities and silenced stories. Here I draw on my lived experience as a second generation lesbian, my studies majoring in gender and sexuality theory and 10 years of living with an invisible chronic illness which the medical profession still doesn’t all believe actually exist.

I have a passion for social justice and hope to encourage broader thinking and more questions as I write about: illness & health, disability & ablism, storytelling, LGBTIQ politics parenting & partnering, queer theory, gender equality, racism & whiteness… and bunnies.

Embodied Illness: Writing from the Body

On Saturday I had the pleasure to attend a workshop on Life Writing/ Writing the Body with the amazing Dr Quinn Eades as part of Adelaide’s Intersections 2016 Conference.

Quinn talked about how he uses the wording ‘this body’ instead of ‘my body’ in his writing because ‘my’ body implies a mind that is seperate to the body and capable of claiming ownership over a body. This got me thinking about embodiment and how I perceive ‘my’ body.

Addressing Personal Failure

The phenomenon of personal failure has grown exponentially over recent decades. Never before has the sense of being a failure to be an adequate person been so freely available to people, and never before has it been so willingly and routinely dispensed.

Michael White,  Addressing Personal Failure 

ME/CFS Confessions

From the outside I appear young, fit and healthy. I have the build of an athlete and people often comment with envy on how thin I am. I look to be successful and prosperous. I’m doing a PhD on scholarship, I win awards, I present at conferences. When you see me I’m usually dressed nice and I smile and when you ask how I’m going I reply with “I’m good thanks”. But what you get to see is not the whole story of my life and my health. I want to share with you 10 confessions from a woman with me/cfs – an invisible, incurable, debilitating chronic illness (read more about me/cfs here).

1. I have a wheelchair. I don’t use it much because I need someone else to push it. I also don’t use it as much as I would like because I it changes how people treat me. By sitting in that chair and turning an invisible illness into a visible disability people suddenly assume I am weak, feeble minded, infantile and all the other false and degrading stereotypes about people with disabilities. Bystanders ask the person pushing my chair questions about me rather then directing the questions at me. I take money from my wallet when sitting in my chair and the cashier gives me a condescending smile and hands the change and the receipt to my chair pusher. Then I also worry that I’m not disabled enough to ‘legitimately’ use a wheelchair. But I like my wheelchair, it helps me live a good life. It’s a step saver and if I save the energy from all the steps I didn’t have to do as can use that energy for other things

2. I typically sleep, or at least lie in bed trying to sleep, a good 12 hours each night. I still wake up unrefreshed (and by unrefreshed I mean I feel as if I have just completed a marathon… or two). I always feel tired, its just a matter of degrees and no amount of rest or sleep will fix that.

The Burden of ME/CFS (Chronic Fatigue Syndrome)

It’s not just the pain and the exhaustion. The feeling that your muscles are filled with lead and your legs can no longer support you. Its not just the relentless fatigue. Exhaustion so complete that you wonder if its possible to die from fatigue. You no longer remember what it felt like to be free of fatigue all you know now is degrees of exhaustion. Its not just the dizziness or the nausea. Eyes that can no longer deal with light and ears that have become so sensitive. Its not just that your brain no longer works properly, that you can’t find the words and your thoughts and memories are fuzzy. Its not just screaming inside a broken shell, having to push through layers of exhaustion and brain fog to get your words out.

It’s the restrictions, the loss of activities once enjoyed. The loss of opportunities and of friends. It’s the hopelessness and despair. The grief. The isolation. The knowledge that this is most likely forever.

No Plebiscite! Not in my name.

$160 million dollars for a marriage equality plebiscite? You have to be fucking kidding me?! That is how much the Australian Liberal government has set aside for the plebiscite in this weeks budget. Such a waste of money. But it is more than a waste, it is actively doing harm to the LGBTIQ community.

$160 million dollars to provide a national platform for hate speech that is what we are going to get. I’m not exaggerating, the Australia Christian Lobby has already petitioned the federal government to suspend our hate speech laws for the duration of the plebiscite campaign so that they can freely express their views. Great. I can’t wait to hear how vile I am, how corrupt, sinful and misguided I am. How I have no place in this society and that I can change my ‘lifestyle’ if I try hard enough. Not that they hate gays oh no, they are doing this for the good of all – did they mention some of their best friends are ex-gays?

Or maybe I’ll get to hear about how great gay people are, the old “I have no problem with gay people, they are great…. I just don’t think they should be allowed to have children. Children need a mother and a father you know, but yeah gay people are great!”

Homophobia wrapped up nicely in the package of concern for children’s welfare. As if the children of LGBTIQ parents are some abstract, mythical creature at the mercy of evil and selfish LGBTIQ parents. Well you know what? We are not an abstract. We already exist all over Australia and all over the world and what’s more? We are doing just fine thank you very much. No, we are not damaged by exposure to the LGBTIQ community – in fact we are enriched by it. And don’t stress we understand societies heteronormative gender roles – they are pretty dam pervasive whoever your parents are. Whether we choose to conform to them or not is another question which every person, regardless of parentage, should ask themselves at some time.

Medical Authority & Social Control Part 1: Biomedicine

I have recently been reading and thinking about how modern medicine has come to be such a powerful institution of control. I wanted to share some of the information I gathered with you in a multi-part series on Medical Authority and Social Control.

Part 1: Biomedicine – the foundation of modern medical authority

Modern medicine has become a central systemic institution of social control and regulation. It has replaced religion as the new authority on the human condition and has become “the new repository of truth, the place were absolute and often final judgements are made by supposedly morally and neutral objects” (Zola in Wendell 1996, p.117). Medicine now has the authority to designate people as normal or abnormal and thus needing treatment or intervention. Medical discourse can transform behaviours and physical experiences into ‘problems’ and ‘symptoms’ requiring management. Medicine has positioned itself as the only knower of the body and in doing so it has claimed sole power and justification for regulating and managing all bodies. The dominance of modern medicine is sustained through discourses of biomedical models of disease and the body.

making change… do not despair

“Let’s fully face the brave new world that has emerged and put down our boulder — the energy destroying belief that we can change the world. Let us walk away from that mountain of despair-inducing failures and focus instead on people in front of us, our colleagues, communities and families. Let us work together to embody the values that we treasure, and not worry about creating successful models that will transform other people. Let us focus on transforming ourselves to be little islands of good caring people, doing right work, assisting where we can, maintaining peace and sanity, people who have learned how to be gentle, decent and brave … even as the dark ocean that has emerged continues to storm around us.”

From Margaret Wheatley  in her book So Far From Home: Lost and Found in Our Brave New World

The Myth of Control of the Body – A Poem

I found an amazing poem I want to share with you. But it needs some context for the sheer brilliance of the poem to be properly understood. It appears in Susan Wendell’s book The Rejected Body: Feminist Philosophical Reflections on Disability and she uses it to finish a chapter on the myth of control of the body.

Wendell argues that part of the reason that people with disabilities and chronic illness are so stigmitised is because our bodies stand testament to the myth that all bodies are controllable and good health is always achievable with the right attitude and management.

The desire for control of the body arose from European patriarchal attitudes that nature and the body (and women) were something that existed to be controlled (and that control was possible). The myth was further perpetrated by Western medical and scientific discourse that has claimed mastery over the human body (and the commercial health indistries which have sprung up around this). No longer do people die of ‘old age’ they die of specific and identified conditions

To realise that we actually don’t have ultimate control of our health and our bodies is to realise the fragility and vulnerability of the body.

#LetThemStay – Solidarity from the Sickbed

With all the #LetThemStay vigils for refuges and asylum seekers going on around Australia at the moment I have been thinking a lot about how to be a political force as a sick person. Or as johanna hedva delightfully puts it in Sick Woman Theory “How do you throw a brick through the window of a bank if you can’t get out of bed?”

I don’t want to throw a brick through the window of a bank – not today anyway. Today I want to stand with the thousands across Australia who have peacefully taken to the streets to protest the cruel and inhumane treatment of asylum seekers who reach our shores via boat.

Homonormativity and Equal Marriage

Equal marriage has become the epitome of LGBT rights struggles in the last decade. The debate has been reduced to the question of for-or-against with no room for critical reflection. Queer theory critiques the push for equal marriage as rather than failing to challenge the dominant normativities of sexual politics, legalising same-sex marriage will further entrench the heteronormative and homonormative discourses of respectable relationships.

Historically, since the production of a homosexual identity, homosexuality has been aligned with the perverse, the unnatural and the pathological. But Valverde (2006) argues that a new post-homosexual sexual object/subject has recently emerged; the Respectable Same-Sex Couple (RSSC). The RSSC is not simply two (deviant) homosexuals put together but a new, socially sanctioned, post-homosexual identity where the discursive links between unnatural sex and homosexuality have been erased. The RSSC is represented by middle-class, middle-aged, white, domestic, desexualised couples that are positioned as ‘just-like’ other (heterosexual) couples. Valverde does not make explicit the links between the emergence of the RSSC and the increasing dominance of neoliberal doctrine but other theorising on the new homonormativity combine the two.