I just wanted to share with you this YouTube channel, which I “discovered” the other day and look forward to seeing grow. Titled ‘Afro Dance’, it aims to bring subscribers the highest quality dance videos within the afrobeats scene. I’m using dance as pain relief these days – a way to loosen and work out the knots and tightness in my upper body that inevitably accrues with wheelchair use. So these kinds of clips are my aerobics videos.
Here are two of my favourite routines so far – published in the last few months:
Love seeing a Black Woman and Black Man working together flawlessly…
…and a dark-skinned Black Woman slaying so hard.
Another little dose of honesty here. In disability activist circles there is much talk of ‘inspiration porn‘ (the late great Stella Young had a TED talk about it that went viral) – the inspirational memes that proliferated online and in viral emails (back in the day) that feature images of disabled adults, teenagers or children doing some everyday activity or some out-of-the-ordinary thing, paired with some words that encourage the able-bodied viewer to thus believe that anything is possible, not feel sorry for themselves, and generally be inspired by the awesome attitude of the disabled individual.
Let me be clear: in an of itself, I do not think that drawing inspiration from others who clearly have some extra shit to deal with in this world, or who are amazing to us for one reason or another, is a bad thing. I really don’t. Particularly if the inspiration being taken is rooted in an understanding that this world can be a harsh and obstacle-ridden place for us disabled people.
However, there are definitely instances of ‘inspiration porn’ where the message being delivered is harmful to disabled people; they are harmful for the reason articulated perfectly in the following excerpt from this article:
“Instead of paying attention to the conditions that make disabled people’s lives difficult, inspiration porn focuses on attitudes of disabled persons as the thing that will make one’s life better or not,” Erevelles said. “[Inspiration porn] takes away from the actual issues that disabled people want folks to pay attention to – like the lack of access, like exclusion from schools and community activities, the ways in which people stare at you, the ways non-disabled people are so uncomfortable being around disabled people except for when they are a source of inspiration.”
“People are inspired by a child with disabilities coloring, but not by someone with a disability fighting for their rights, because in the former the subject is happy, while in the latter they are frustrated and angry”
So you see, the reason ‘inspiration porn’ is a problem is because it can obscure the fact that disabled people face a lot of discrimination, oppression and marginalisation in all societies on this planet, that no amount of positive thinking and attitude adjustment (although those things are useful on an individual level) will remedy. It’s perfectly okay and humane (and human) to recognise a strong spirit or the positive inner qualities of disabled people; but it is more important for people to recognise and DO SOMETHING ABOUT the systemic barriers disabled people face to participating and contributing to society, and living full lives.
I had a ball tonight delivering this little speech at Women of the World Festival Melbourne Opening (invite only). Was honoured to present alongside MzRizk, Katrina Sedgwick, Aseel Tayah, Inez Martorell, and Heather Horrocks. We were each asked to respond to this in 5 minutes: “As a woman of the world what are your top 3 priorities?” And end with “as a woman of the world, my dream for our future is…”. I love how different our responses were from each other! And that in delivering my own, I actually found a whole new group of comrades who vibed with what I said 🙂
Much thanks to Tammy Anderson for being our charismatic MC for the evening, Karen Jackson for a beautiful Acknowledgement of Country, the West Papuan Black Sistaz for bringing the music, and to Producer Alia Gabres for inviting me to share my thoughts!
SO. When I received the brief for this talk today, it sounded pretty simple … until I remembered how HUGE and complex the world is, how MANY women there are in it, and how diverse our world views and lived experiences are.
Because of this, I feel the need to preface my 3 priorities by stating clearly that I am a Black Pacific Islander, immigrant citizen of a white settler colony. THAT IS THE LENS through which I see the world.
When I think of diversity feminism, because of the hugeness of the world, I tend to focus on what I know and what I can shape – and that is the societies of white settler colonies like Australia, New Zealand, Canada, United States.
These nation-states have similar histories in terms of genocidal settler violence against indigenous peoples, slavery or coerced labour, waves of white migration, waves of persistent opposition to NON-white migration, and internal histories of struggle to extend civil and human rights to various groups within them – struggles that continue today.
Bearing this in mind, here are my 3 priorities as a woman of the world.
Priority Number One. Think Globally.
I had the good fortune this year of meeting my hero, scholar, activist and feminist Angela Davis. One of many things I admire about Angela, is her ability to see the connections between social justice and environmental struggles in different parts of the globe; and how they ALL connect to the global economic system, and the decadence of the industrialised world. Corporatism. The profit motive.
Fundamentally, I know that this is CRUCIAL to understand. So my NUMBER ONE lifelong priority is to educate myself, and then others, on these global interconnections. That understanding enables cross border solidarity, strategizing, and collective action, for the liberation of humankind including womankind.
Priority Number Two. Act intersectionally, locally.
This one is actually a little bit easier for me to get than most; mainly because my own lived experience is extremely intersectional. I’m Black. I’m a Black Woman. I’m a Black disabled woman who lives with a mental illness. And I am on a very low income.
On a weekly basis, I come up against the intersections of various types of marginalization I experience because of structural discrimination against me.
There are a range of structural -isms and phobias built into our colonies’ foundations that INTERSECT to make some people’s lives much harder than they should be. Whilst most women will face sexism and misogyny, focusing only on those issues fails to take into account those other systemic barriers that people who are not part of the power structure, also face: racism, colorism, homophobia, transphobia, heterosexism, classism, ageism, to name a few.
Then there is the fact that indigenous Australians – like indigenous peoples in other white settler colonies whose sovereignty has never been ceded – contend with pervasive and deep rooted racism, the intergenerational effects of genocidal actions taken by colonisers over centuries, and present day settler violence against indigenous communities and bodies.
Add to that the plight of the truly vulnerable stateless people, asylum seekers and refugees, who are dealt appalling carceral punishments for committing the supposed crime of seeking asylum and a future on our imperfect but safer shores.
For any woman of the world truly concerned with social justice and liberation, prioritizing the ability to think INTERSECTIONALLY and align our social justice organizing with that vision, is essential.
Priority Number Three. Make ethical consumer and political choices.
We live in a country that is one of the beneficiaries of the global capitalist system, which relies on the exploitation of whole countries and regions, people, natural resources and animals to create products that all of us who have forgotten how to live in harmony with nature, choose to consume. Those choices maintain demand for products. None of us, therefore, are untainted by the injustice built into the system that we are born into. My phone, for example, was created in part with elements exploitatively mined from the Congo and made by workers under indefensible conditions in China.
I am a writer and also a person with a disability; I need technology to work and live, so giving up the phone is not a choice I can make anytime soon. But there are myriad choices we as consumers living in the West make all the time, particularly if you have disposable income.
So my priority going forward is to make sure that my choices, as much as possible, are made consciously. By that I mean, I want to know where my stuff was made, who made it and under what conditions, and what it was made out of. As much as possible, I want to make ethical and educated choices.
And speaking of that, I haven’t yet mentioned the democratic system. Here again, choices must be made, not only at elections, but at all times between them. I want to choose to stay engaged with what is happening in politics on all levels, to remain ACTIVE and support the people and political collectives who champion the values I hold dear, and policies I know to be best for the implementation of those values. If Trump’s ascension to the presidency has taught us anything, it is to stay awake, engaged, and ACTIVE — over 90 million people eligible to vote did not do so, in the recent U.S election.
To conclude, as a woman of the world, my dream for our future is that we start recognising that DIVERSITY IS REALITY, globally and locally. And that we work hard together to create a world where diverse peoples, diverse women, can live free of structural exploitation, oppression and marginalization.
You best believe I am getting the above logo on a t-shirt! Mike Mort creates ‘SUPER ACCESSIBILITY LOGOS’, fun variations of the international accessibility logo inspired by comic book, film, television, video-game and pop-culture icons.
Here is some information on Mike from his site: “Mike Mort is a 25-year-old blogger and wheelchair-user, living with Duchenne Muscular Dystrophy. He believes deeply in intersectional social justice and ending all forms of oppression. Disabled activism is a major passion and personal cause in his everyday life. With this blog, Mike hopes to educate others about ableism and promote the equality and understanding of all disabled and chronically ill individuals.”
Click on the image above – Black Wonder-Woman (Pride) – to go to his blog. Love that he has a STELLA YOUNG quote on his masthead. I truly miss her; and am only now developing the proud ‘crip’ moxy that she departed this earth with at the tender age of 32. It has taken me a decade to truly understand this, but Stella taught me that pride is not about ego for disabled people… it is about dignity and valuing ourselves – and our bodies – in a world that affords us neither dignity nor value.
Disability pride (like Black pride and LGBTQI pride) is therefore a revolutionary tool, a paradigm shifter in a world that marginalises us physically, culturally and institutionally everyday – which can be demoralising in the extreme. As a Black Woman in a white settler colony, I can physically go into most spaces, but know I will often have to deal with misogynoir once I get in there; however, as a Disabled Black Woman, I am frequently prevented from even entering the building. Most public spaces are inaccessible to me. And when I do get in, I know – from years of experience – that I will have to deal with cultural ableism along with racist misogyny at some point (and classism, ableism related to mental illness, et cetera.)
Black Disability Pride in the face of all of this is not an indulgence, it is essential; a way of affirming our humanity and right to exist without the barriers that society erects against us, whether maliciously or not. And since disability forces an extreme and painful type of marginalisation very few of my Black friends (let alone other lighter skinned people of colour) understand, it is up to me to fight my battles alone. So I will stare at the above logo whenever I need a reminder to be my own damn hero.
Love you Stella – I know you hated the concept of being an “inspiration”, but you have inspired me to grow a pair and be unwavering when it comes to speaking up for others, and for myself (something I have hitherto been tremendously shit at doing), in the face of pervasive ableist marginalisation/discrimination. You encouraged me to do so five years ago, and I am finally doing it. I am certain you would be mighty pleased about that.
Sometimes what seems like a tragedy, or the manifestation of your idea of “the worst case scenario”, is actually a tremendous blessing in disguise. I know that seems like a glib line; but it is actually a lesson I have lived and learned, over and over again, thus far in what I feel will be an unusually and extraordinarily long life.
When I suddenly became a paraplegic in 2006, weeks after undergoing spinal cord surgery to decompress a syrinx that had crippled me over the course of two years, and at the end of a 9 year period in which everything that could go wrong in my life went painfully, irreversibly wrong, I was already an in-patient in the rehabilitation hospital where I would learn how to negotiate life in a wheelchair – and experience my first adult spiritual ‘awakening’ (there have been many, since childhood. Each one leads to a new level of awareness).
I was in a dangerously dark place psychologically before the decompression surgery, having sustained trauma upon trauma from physical degeneration, profound loss, relationships with others and a tortured and hateful relationship with myself, whilst having no outlets whatsoever – nor the emotional tools – to process the grief and trauma that filled the ocean within me like an oil spill. During that period I wrote so much and drew so many charcoal and black biro sketches; they were beautiful in the way that a sad depressing song or a dark art film might be, yet brought me no closer to the catharsis I sorely needed.
It is hard to find your way out of a dark place with no one there to guide you how to do it. People in my family, despite their deep and powerful love for me, were not equipped to guide me out of the abyss I was mired in, and barely knew how to cope with their own life aches and wounds – let alone the trauma of seeing me go through circumstances they were powerless to save me from. I needed serious, holistic psychological lifesaving – but the only experience I had had with a psychological professional – a very young, earnest, but out of her depth school psychologist I had to see as a result of truancy – had shattered my trust in them.
In lieu of the help I needed, false tough exteriors had masked for many years the inner turmoil that I feared would engulf me if I ever really acknowledged it. This went on for almost a decade; I tried on the mask of party girl, loner, stoner, freak. I suppressed my natural interests and was ashamed of the purest, most earnest, most vulnerable and most real parts of myself; taking cues from my environment, friends, boyfriends, society, I understood that these parts of me were not acceptable – they made me different in ways that I did not want to be. Ways that I feared being.
But a door to healing opened in rehab. It was a door that those vulnerable parts of me had been silently petitioning the Universe for, even as my conscious mind was clueless as to how to lift myself out of the mess I was in. I was a zombie in the days and weeks that followed losing the normal use of most of my body. And I am a stoic motherfucker; so my instinctual reaction was to focus completely on my physical routines like a factory worker might focus on an assembly line. A set of steps. A job to be done. A ‘to do’ list. Day in, day out, doing the things to make the physios and doctors and nurses all say “good job Pauline!” before retiring to my room at night and releasing a flood of tears silently into my pillow. I was a day zombie, but I was a productive zombie. I was doing what needed to be done.
That is when I learned a very important life lesson: mind and body are truly connected. The physical rehabilitation routines eventually developed into a love of the routines; the love for the routines grew into a love for training in the gym. I became a morning gym junkie, weirdly – became physically strong, kind of ripped and ironically fitter than I had ever been when I was able to walk. I experienced an unexpected unblocking of energy and rush of joyful, sensual, creative and intuitive inspiration; I made art with rainbow colours, made music, rediscovered my sense of humour and went on moonlight strolls through the patient gardens listening to alternative music and feeling, for the first time since childhood, connected to all that is.
And simultaneously, without effort or planning, I accepted my new life in a wheelchair. And kissed goodbye to the past. It was FREEDOM; my first taste of what that word truly means. I was disabled, but man, I was free.
In tandem with this physically induced clearing of psychological blocks, I also – for the first time – had free and immediate access to compatible and intuitive psychological professionals. The resident sex therapist was a beautiful intuitive named Alexa – from memory, she rocked white cowboy boots and a retro dress daily like the fucking star she was. I’d roll pass her office on the way to my weekly meditation class (another first for me, delivered into my life courtesy of my new disability) and peer into the room adorned with rainbow cushions, rainbow stationary, aglow with warm lighting – and feel supernaturally compelled to go in.
One day I did. At the end of my first two meetings with Alexa she gave me two postcards which I still have in my bedroom and meditate on today. The first one was a print of a painting – a beautiful big banyan tree with huge roots in the earth and extending into the sky; one side of the sky was day, and the other night. Throughout this scene are symbolic creatures and sacred symbols. Before rummaging through her desk to find this card for me, she rubbed her belly and told me she had an intuition this picture would somehow be important in my life. I accepted the card with a grateful heart, but sceptical mind; yet the card has been, and continues to be, a signpost of revelations.
The second postcard she gave me moved me on a level that I had forgotten I had; shattering the false social masks that had been holding me together yet imprisoning me for a decade. We had been talking very casually about my life up to that point, and some of the realisations I was having on the other side of “the thing that I feared most” (disability) happening; but she had begun to intuit that despite making serious progress in such a short space of time, there were still some toxic blocks I needed to address – once I left this womb-like centre of rehabilitation and affirmation, and went back into the world. On the card, was a simple black and white photograph of a masquerade mask-covered face in Venice.
After leaving her office that afternoon, I turned the card over. It read:
In my darkest hour silence spoke louder than words
I am lost in a floating dreamscape
I see my face behind a mask
with knowing steps I am lured closer
reflection strips my guise
in the heart of darkness
I see a light
I hear my voice and I am found.
In those words I intuited another important lesson: beyond the artifice of social masks, constructed in the darkness of the fear that who we really are is too broken, too weird, too ugly or too vulnerable to see the light of day, is who we really, truly are. A Light within.
I am learning to live openly as the Light.
The Mask Venezia by Nikita
Dr Norman Doidge is going to be on ABC’s Q&A program on Monday night – so I thought I’d re-post this piece I published here in early 2011. It’s about research into ‘neuroplasticity’ and Norman’s book, ‘The Brain That Changes Itself’. (Side note: it gave me a weird feeling to go back and read this previous post. Like reading an old letter, or a diary entry.) I’ve actually been thinking about this book a lot lately – due to a story project I am working on.
“Every man can, if he so desires, become the sculptor of his own brain”
Santiago Ramon y Cajal
One day, back in 2009, whilst trying to corral a spider into a cup for humane removal (geez, the things I remember) I was listening to a radio interview with Dr Norman Doidge. Doidge, I discovered, is a psychiatrist, psychoanalyst, medical researcher, and author of the book The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science. The interview was fascinating – so fascinating, in fact, that this laymen immediately went out and purchased Dr Doidge’s book.
The Brain That Changes Itself recounts, in lucid language, remarkable stories of healing and transformation from pioneers at the forefront of brain science, in the area called neuroplasticity.Neuroplasticity is essentially the ability of our brains to change themselves. Neuro comes from the word neuron, the nerve cells in our brains and nervous system. Plastic means changeable, malleable… modifiable. The discovery of neuroplasticity, although still not accepted by some neuroscientists, sparked a scientific revolution in the 20th century: major breakthroughs have and are being made in the treatment of various disorders and disabilities, of both the physical and psychological kind. The real value of neuroplasticity comes from the idea that everything starts in the mind. As stated in the ‘Philosophy’ section of this blog, I have a passionate interest in this idea.
To understand how revolutionary the discovery of the plasticity of the brain is, we need to consider the history that preceded it. For 400 years, since René Descartes first postulated that the brain was a complex machine, the prevailing consensus regarding the human brain in Western science was that the brain indeed operated like a machine: that it was unchanging, fixed, with different “compartments” existing to perform specific functions. This idea, still adhered to by some scientists, is calledLocalizationism.
According to this idea, if a brain “compartment” were to fail, then the function that that compartment served would be irreparably lost. It was believed that, after childhood, the brain changed only oncemore, when it began its process of decline – a process assumed to be inevitable. And it was believed that damaged brain cells in childhood could never be replaced, and that people born with mental or intellectual impairments would be burdened with the same level of impairment for life. A fatalistic attitude towards the lot of people with mental and intellectual impairments reigned for many centuries – rehabilitation was often seen as impossible, not worth pursuing. The idea that the brain (and, subsequently, the body) could be improved through exercises was considered fanciful. Neuron manipulation was the stuff of science fiction.
But the neuroplastic revolution would change all of that. In the late 1960s to early 1970s, a band of brilliant, awesomely ballsy scientists made a series of discoveries that would challenge the status quo of localizationism. What they discovered was that the brain is not machinelike, hardwired to perform in a particular manner. Rather, the human brain continuously changes and reorganises itself. It changes its structure with each activity it performs. Furthermore, it changes to perfect its circuits over time, so that it is better suited to the tasks it performs. And in some instances, if certain ‘parts’ fail, other ‘parts’ may take over to perform the ‘lost’ function – and can be trained to do so.
This discovery was so important, for what it has meant for the rehabilitation of millions of people around the world afflicted with impairments, who may have previously been institutionalized, or just not given help. Having lived with stroke victims during their rehabilitation, I have seen the benefits of “brain training” that stimulates a person’s own brains ability to change and compensate for damage. The discovery of neuroplasticity also heralded a new era of innovation that continues today – new treatments of a variety of disorders and conditions, bridging the gap between science fiction and science fact. Treatments that work with the brains own ability to adapt and change itself.
In his book, Doidge describes some of these innovations, and uses the stories of various patients and their pioneering doctors and brain scientists to explain how neuroplasticity works and is being utilized – often in conjunction with technology – to rehabilitate people with conditions previously deemed incurable. Take the first story in the book, for example. Cheryl was a woman whose vestibular apparatus (i.e. the balance system, the sensory organ that allows us all to have balance at all times) wasobliterated after a post-operative infection in 1997. For many years after, she lived with the almostunbearable sensation of falling, that, apart from being physically crippling, causing her to lose her job and prior life, destroyed her emotional health. She was unable to stand, anxious, afraid and alone, in the knowledge that the condition would be permanent.
Cheryl’s lot changed when she met Dr Bach-Y-Rita, one of those rare scientific geniuses and early pioneers of neuroplastic research. In 1969, Europe’s science journal Nature published an article about a vibrating chair Bach-Y-Rita invented that enabled people who had been blind from birth to see (I’d describe how it works here, but that would take too long. Read the book for that.) Essentially the chair was a tactile vision device. Rather than receiving visual information through their eyes, the blind people received the information through their skin. One sense was used to replace another. This is able to happen due to neuroplasticity. Dr Bach-Y-Rita had discovered that we see with our brains, not our eyes. In fact, we perceive and sense everything with our brains.
This discovery and subsequent work led many years later to Bach-Y-Rita devising the contraption that would liberate Cheryl from her nightmare condition. Cheryl’s saving grace was a helmet – a hat with an accelerometer in it, hooked up to a computer, that sent signals to a plastic strip placed on her tongue – balance signals that would replicate the balance system that Cheryl had lost. The invention was successful far beyond what they had expected. For not only was Cheryl able to balance and “be normal” when she had the helmet on, but for a period of time after it had been removed! And with each session with the helmet on (they increased the session times gradually) the length of time she was “normal” after a treatment increased also. It appeared her brain was being trained to balance itself – despite the physical balance apparatus in her inner ear still being damaged, her brain was finding and forging a new way to perform that task. Remarkably, after a year of treatment, she didn’t need to use the helmet at all – she was essentially cured.
As well as physical conditions, there is great potential for neuroplastic treatments to be used to correct and treat psychosomatic disorders, and there is a chapter on this as well. Doidge’s appendices, in which he speculates about the relationship between neuroplasticity, culture, and progress, were particular fascinating to me too. After reading the book I had a hundred more questions about the relationship between brain plasticity and perception, hypocrisy, ideolology, religion, spirituality, et cetera. I intend to explore these questions further in future posts.
(post continues here.)