Saturday, 8 November 2014

Bridges of Oregon

for London McCabe 

McCullough Memorial bridge
Gold Beach bridge, Big Creek bridge
Alsea Bay bridge, Cape Creek bridge
Thomas Creek bridge, Astoria bridge

Dear London, I hear
you love hats. I love
hats too. I hope you have
a tower of hats now
up to the second sky.

Reedsport bridge, Siuslaw River bridge
Newport bridge, Depot Bay bridge, Weddle/
Devaney bridge, Crabtree Creek bridge
Neal Lane bridge, Crawfordsville bridge

Today poppies pour
out of the Tower of London
for state-sanctioned mass murder
the fallen, but I see nobody
pouring red flowers
from their windows
for you. 

Gallon House bridge, Grave Creek bridge
Jordon bridge, Office bridge, Remote bridge, Short bridge
Drift Creek bridge, Hannah bridge, Oregon City bridge
Sellwood bridge, Ross Island bridge, Marquam bridge

When I open my computer
and your face falls across my dash
and Wikipedia information
overload sets in (Oregon bridges, famous
and unknown)
and there's simply no drafting
a poem, I will remember
(I hope I will, what with my awful recall)
when all I could come up with
was these historic Oregon bridges
and some lazy London-bridge
is-falling-down parallel.

Hawthorne bridge, Morrison bridge, Burnside bridge
Steel bridge, Broadway bridge, Fremont bridge, St. Johns bridge
Cape Creek bridge, Cazadero bridge, Crane-Venator bridge
High bridge, Hawthorne bridge, Shepperd´s Dell bridge

I have no idea which one
you were thrown from
nor which, in Oregon or indeed, London
fallen and raised again
throughout history
could ever have carried or contained you. And how
could I pretend to?

an autistic "cousin"
will never forget, has no reason to.

Wednesday, 29 October 2014

A new Disability Poetry anthology, anyone?

I’m massively pleased to announce that Nine Arches Press has commissioned Sandra Alland, myself, and Daniel Sluman to co-edit an anthology of UK Disability Poetry / Crip Poetics, which we think will be the very first of its kind in the UK. It has no title as of yet. Publication date is to be confirmed (we are determined to pace ourselves, given our own disability and health considerations) but we expect to be able to publish sometime in 2016.

In 2011, U.S.-based poetry editors Jennifer Bartlett, Sheila Black and Mike Northen collaborated to bring you Beauty Is A Verb, the very first anthology to draw together and showcase The New Poetry of Disability, or Crip Poetics, being developed largely in the United States. Beauty Is A Verb traced a history of Crip Poetics in America from its forefather, Larry Eigner, to a present crop of emerging and established contemporary poets with disabilities working in the fledgling but ever-expanding field.

Our cultural, political and social context in the UK is different to that which Beauty Is A Verb emerged from. As well as owing a massive debt to Mike Northen and co, and the many reputable poets who featured in that anthology, the editors plan on drawing together our backgrounds and influences in poetry, political and social activism and academia around disability, feminism, sexuality and gender fluidity/variation, with a consciously intersectional framework.

We plan to draw on the context of anti-Atos / Welfare Reform and NHS privatisation activism, whose leading lights (particularly on online social networks) have been women, including queer women and women of colour – a clear antithesis to the systemic norm. In both poetry prose we plan to explore, creatively and critically, other bodily identities and oppressions which intersect with disability to create what poet and activist Eli Clare called “marked bodies.” Racialised bodies, gender non-conforming bodies, bodies “marked” by class or religion.

As editors we are committed to the social model of disability (with an eye on other radical socio-political models), which means we are casting a wide net in our call for poets who self-identify as disabled, people with disabilities, crip, or any variation thereof, who consider their impairments and / or their disabled identity a key part of their thematic, conceptual and aesthetic practice.

We are drawing up guidelines as we speak, as well as deciding who exactly we are defining as “disabled” for the purposes of this project. For now, though, let’s just say we want to represent visible and invisible long-term and life-altering physical disabilities / mobility impairments, deafness, learning disabilities, blindness, chronic and terminal illnesses (e.g. ME/CFS/Fibromyalgia etc.), mental illness – basically, whatever non-normative bodily alignments have a place under the banner of “disabled” according to the social model.

As a whole, the anthology is likely to contain a mixture of work which is called-for / submitted, solicited / commissioned, and re-published / re-printed by permission. We also hope to make the material accessible by multiple means to guarantee as wide a readership as possible. But while we spend time thinking about that, and drawing up specific submission guidelines, please spread the word to potential writers and readers. Find me online if you know of any UK-based work that you think needs to be included. And watch this space!

Your editors,

Sandra Alland, Markie Burnhope and Daniel Sluman

Sandra Alland is a writer, performer, filmmaker and interdisciplinary artist. She co-won the 2013 bpNichol Chapbook Award for Naturally Speaking (espresso: Toronto), an examination of gender and disability poetics. Her current projects include The Queer & Trans* Deaf & Disabled Video Project, Cachín Cachán Cachunga!, SEEP, and They They Theys. Sandra has fibromyalgia, hypermobility and scoliosis. 

Markie Burnhope is a poet, editor and disability activist. Markie co-edited Catechism: Poems for Pussy Riot, and Fit to Work: Poets Against Atos. Their published poetry includes the pamphlets The Snowboy (Salt Publishing, 2011) and Lever Arch (Knives Forks and Spoons Press, 2013), and their debut full-length collection, Species (Nine Arches Press, 2014). Markie was born with Spina bifida and Hydrocephalus, and self-identifies as disabled, neurodivergent, non-binary and genderqueer.

Daniel Sluman is a young poet based in Gloucestershire. His poems have appeared widely in journals such as Cadaverine, Popshot, Shit Creek Review, & Orbis. His debut full-length collection, Absence has a weight of its own, was published in 2012 through Nine Arches Press, who will also be publishing his second collection, The Terrible, in 2015. Daniel is a through-hip amputee from childhood bone cancer and a resulting chronic back condition.

Wednesday, 15 October 2014

The Costs of No-wage Activism: 10 Reasons I Might Unfriend You on Social Media

This post began as a note on Facebook, which I've decided to reblog here as it might help others engaging in social activism online, and facing similar barriers. Recently I've had one or two conversations which have hurt, and added to years of similar conversations which have hurt (a long, frustrating cycle of triggering, upset, anger, and subsequent guilt). These conversations were emotionally, mentally and physically taxing, and they caused me to unfriend and block certain people. So in the interest of full disclosure, here are 10 people I greatly struggle to talk with, and have often blocked / will often block in the future on social media - a handy guide. As you'll notice, when I discuss certain subjects, I willingly expose myself to all of the following in order to teach people:

1. Tory / ConDem apologists: people *I* am reading as defending, supporting, making excuses for, current UK government attacks on the livelihoods of disabled and sick people. When I discuss these issues, mortality rates are at the forefront of my mind. A lot of people have died because of current UK Welfare Reforms, cuts to NHS funding, and rapid NHS privatisation. If you think any of this is debatable and choose to tell me about it, I will block you.

2. People who a) accuse me, my style or methods of activism as "the problem with the Left." b) call me "divisive", erasing any societal divisions which have already been in place centuries before I was born, which I try to push back against in my own small, individual, social media way. I did not cause, and I do not support, these divisions. c) People who say my problem is that I'm "preaching to the choir." If you think I'm preaching to the choir, and you care what I have to say, get out of the congregation and into the choir. Telling me any of these things only serves to explain to me why you're not listening.

3. People who do any of the following (which I regard as ableism if *I* judge the conversation to be pertinent to disability or related intersections of oppression): white / able / mansplaining, derailing, concern-trolling, gaslighting, victim-blaming, erasure and flattening-out of oppression struggle into "hard times" we all face (we do not all face oppression).

4. People who tell me that more people would listen if I was more polite and I shouted less. Do you think I've been in an ableist society for 32 years and never asked anyone nicely to stop being ableist? Judging by the way I conduct myself as an activist, judging by the stories I tell and the articles I link to, do you think politeness has ever worked as a tool against ableism or any other oppression? Rhetorical question. Politeness doesn't work. Politeness is not as near to Goodness or Righteousness as you think. Sometimes it is damn far, even abusive.

5. "Not All" Men / Abled People / White People / Straight People / Cis People: those who deny any personal complicity in oppressions which are caused and reinforced by entire privileged social classes on a widespread, societal basis. If I implicated you in what I said and it stung, trust that I use my words carefully and that the sting is an inevitable and good outcome. You can either use the sting to learn something, or blame me for stinging you, piling your complaints onto the collective onslaught which is my daily oppression.

6. People who "don't like labels", and therefore feel the right to proceed to police the labels *I* choose to describe my life experience and identity. You may not realise you're doing this, but if I have to spend more than one or two exchanges debating the merits and faults of self-identifying labels with you, you are doing it.

7. People who make me spend significant amounts of time personally teaching them about the issues, then forget and dismiss that effort as soon as they get cross or "offended" by anything I've said. Not once did I tell you nothing I've got to say will sting. Not once did I say you are a successful ally simply for caring. There is work to do.

8. People who refuse point-blank to respect and understand the concept of privilege, and then refuse to check their own privilege when I patiently (or impatiently) lay out the reasons they need to.

9. People who scoff at, laugh at, baulk at or undermine the entire framework I do my best to work under as an activist: intersectionality. Calling it (for example) a privileged discourse which requires a university education because it uses "long words" is a denial that it was written by those facing racial, cis/hetero/sexist, classist, economic and disability struggles (among others). Many intersectional activists, primarily Black women and Women of Colour, do their work via a home computer, and access to this assistive technology neither proves their privilege nor erases their oppression.

10. People who position themselves above me by identifying as an "ally" but demonstrably proving to be actively detrimental to my work by doing any of the above. And people who defend others who've done it.

If you have ever been unfriended or blocked by me on social media, it will almost certainly be because you did one of these, not because 1) I'm nasty, 2) had a bad day, 3) "won't let anyone disagree with me", 4) can't engage in civil discussion. I have fabulous discussions all day, every day, with those colleagues and allies who grasp what I'm about. If I'm not having fabulous discussions with you, you need to ask yourself why, instead of assuming I've just ignored how great you are.

You now have been gifted the privilege of clarification. Go and sin no more.

Thursday, 25 September 2014

The Universal "Wrong Body": My Own Non-binary Trans Narrative

Note: This post describes my own path, my own journey, my own relationship with my own disability and gender. Other disabled people will have different responses to theirs. Some will feel they’ve no choice but to embrace their assigned gender with pride. Disabled women – especially disabled Black women and Women of Colour – may feel that identifying as a cis Woman is the most crucial response to an ableist, disempowering, disgendering society that they could possibly embody. Similarly, disabled cis men who have been demasculised by an ableist society may want to exert and emphasise their masculinity as their response. My response to my own gender should not be taken as criticism or erasure of other disabled people’s choices. But it might offer a path to others who have felt like me, and see no value in being stagnant.

TW: gender dysphoria, disabled body issues, sexual dysfunction, systemic and interpersonal ableism and abuse, miscarriage

I am non-binary, genderderqueer, and trans.

I am non-binary, genderqueer, because my body, my embodiment experience, does not fit into, and has not been historically gendered as, “man” or “woman” as the non-disabled world defines and describes it to me.

I am trans because my thinking, experience, acceptance and conceptualisation of my body has had to transcend the binary of “man” / “woman.” It has had to go beyond it for social, societal, political and personal reasons. The types of embodiment, categories and boxes, handed down to me by cisnormative non-disabled culture and society are no longer useful, no longer anything I can take pride in. So I’ve abandoned them. I can’t fit. I don’t fit. And I’ve become far more confident and secure in myself since I decided I don’t need to try to fit anymore. I can build my own gendered embodiment space, and occupy it, paint the walls, put posters up, leave and come back as and when I please.

There was always something different about me. Everyone who has ever talked to me knows this. But it took me all this time to figure this much out, especially because I didn't think my life had been like other trans people's lives I had read and heard about. Did I even have gender dysphoria, what I thought was required for you to even have the right to identify as trans?

The most common trans narrative is that if you suffer bodily dysphoria and have intense, deep understanding that your innermost self doesn’t align with the gender or sex you were assigned, you are not cis. You are trans. This common narrative is described by the phrase “born in the wrong body,” and is particularly understandable in cases where people are deeply troubled that their bodies don’t match with their internal sense of their selves. They are driven to mental health problems, self-harm, phantom pain. They know, in everything that they are, that the gender they were assigned based on their genitals, and a wholly inadequate binary model of biological / physiological / scientific sex, is wrong (I won’t get into this now, but there is plenty of evidence to suggest that narrowing us down into two excludes people who are intersex, and also people who have various disabilities and conditions which present them with a body that veers from the prescribed gender “criteria”).

Anyway, this is the physical type of dysphoria that most people wanting to know what being trans "feels like" will find out about.

I now know that one doesn’t have to feel physical, bodily dysphoria to identify as trans; a mere disassociation with the gender assigned to you at birth is enough, on whatever grounds. But leaving that aside for a second, what do you do if you were born in what is universally considered “the wrong body”? Because in terms of gender alone – if you do not take into account the intersections of gender AND disability together – the “wrong” body and the “right” body are still both a non-disabled body. Gender dysphoria alone (we are told) is an uncommon, unusual experience relative to what most people feel. Disability is not. And there are no lines drawn on your body to distinguish bits that are gendered from bits that are disabled. So how would you know?

For 32 years of my life, I have had gender dysphoria, and not known it. Why? Because the world was constantly telling me “Of course you’re in the wrong body; I would hate to live in your body. If I lived in your body, I would kill myself.” This sentiment is normalised, widespread, and reaches into the lives of disabled people on every level, from personal relationships and social participation to corporate and government policy. We are in the Universal Wrong Body. If we do suffer gender dysphoria at all, how can we possibly separate and distinguish that bodily disparity from the message: your body is inconvenient, freakish, and unwelcome? The non-disabled public and politicians alike are even out in full daylight, debating whether we deserve our social security because our bodies simply aren’t necessary to our society. They are superfluous. We are being triggered and made to believe we don’t deserve to exist at every turn.

So there we are: I’ve had dysphoria. All my life. Do I call it gender dysphoria? I don’t even know. To all intents and purposes, my gender is Disabled. For as long as I can remember, I’ve felt no need to defend any identification as “man” but every need to defend my identification as “disabled person.” I am so proud of being a disabled person. It was there when I was born and will be there when I’ve gone.

“Non-binary” and “genderqueer”: words handed down to me by non-disabled society (as are so many things, until it’s unimaginably difficult to disentangle what we’ve been coercively lead to believe, and what we’ve chosen) to describe a gender which falls in between, or outside, the male / female binary; is both, or neither or all. I also have other words to describe my gender which acknowledge that it’s inseparable from my disability. Because this has been my body from birth. I don’t know where my disabled body ends and my gendered body begins. Nobody ever told me where to draw the line between them, and if they did, I’d consider it arbitrary anyway. I have lived my gender through the filter of disability. I see the world through the lens of disability.

These other words are “dis-cis” and “disgender.” Both words share the prefix “dis” found in the word “disabled.” And that prefix has the same function. Neither word necessarily means “not cis / trans.” They might mean just “less cis”, or “vaguely gendered” (even though “gendervague” exists as a term already, a fairly useful one that doesn’t incorporate disability). But crucially, they mean what society has made me, during a lifetime's exposure to oppression, whether my own in the form of ableism, or others' (my Hydrocephalus gives me a certain amount of hypersensitivity to emotionally traumatic stimuli -- I consider myself not just an individual but part of a disabled community; when it hurts, I hurt).

To explain these words for disabled gender, I need to go to the social model of disability. The social model is a reaction to the dominant medical model of disability, which everyone knows, and most people, especially non-disabled people, are perfectly familiar and comfortable with. It says that we have disabilities and conditions, and they are what’s “wrong with us.” We have afflictions, malfunctions, dysfunctions, to be cured. Our bodies are machines to be fixed.

The social model, in contrast, relocates the source and cause of our “disability” to society. We have impairments, and they are our physical and cognitive conditions, illnesses and disabilities. They cause us pain. No human being is exempt from the potential possibility of having that pain. But our Disability, our disablement, comes from the inability of those bodies to participate fully in the world. “Disablement” becomes our treatment by society, not what’s inherently our fault, our problem or our responsibility. Lack of access to buildings, jobs, relationships, independent living, adequate medication, treatment and healthcare, housing, financial security. Prejudice, discrimination, stereotyping, patronisation, sentimentality, erasure. Ableist slurs, hate speech, hate crime, government law and policy. A history of freak shows, institutional sex abuse, eugenics.

These have been our disablement. Our bodies bear the brunt of it, but they are not its inevitable cause or reason for it. Our bodies are not to be blamed or fobbed off as an inevitable reason for our disablement; otherwise we would be prejudiced against people due to all sources of pain, from a headache to a stubbed toe, and, by and large, we’re not.

We do not need to “understand how hard it is” for non-disabled society to accept us. We do not need to relent and accept that society “fears what it doesn’t understand, and that’s OK.” It’s not OK. It all accumulates and makes up what is our Disability. So under the social model, “disabled” does not mean inherently “unable.” Disabled is what we are made. Another word to describe it could be “disempowered.”

And this disempowerment, for me, has extended to gender. It includes demasculisation, or, if you like, “dis-masculisation.” (Male privilege notwithstanding, because if I am gendered as “male” by others, I can benefit from that in certain situations, even if I feel internally, negatively, misgendered. This is all about my internal understanding of myself.)

The line between “cis” and “trans” is blurred and complicated when your entire body is marked as culturally, economically, politically and physically undesirable, “wrong”, by a vast cultural standard, even by a global standard. I’ve been slowly and gradually made “dis-cis.” Over a lifetime, I’ve been “disgendered”: constructively dismissed from the non-disabled, normative gender binary.
How? What are the details? To answer that would take an entire book but here are a few:

One of my physical disabilities (apart from Hydrocephalus – I am also neurodiverse) is Spina bifida, a spinal birth defect causing (among other things) some paralysis, with loss of sensation, on the lower half of my body. That has meant what is known as sexual “dysfunction” by able-bodied standards. I find erections difficult to achieve. I very rarely ejaculate. So I've discovered that sexual activity which doesn't involve my genitals is far less stressful, and much more pleasurable (I won’t go into the kinks I prefer!). In fact, I’m at the point now where if I never saw my genitals or involved my genitals in sex again, I would be perfectly fine with my sex life.

This is queer and non-normative in a cisheteronormative society, especially in a “male” world which is obsessed with penetrative sex, and equates your proficiency in that activity with your success as a man. Cis straight men often have difficulty “figuring out” how gay women who “can’t perform penetrative sex” (hint: they can), have any pleasure at all in sex. What do they even do, and what would be great about that? I laugh when I hear them ask that question. But I don’t qualify in their worldview. When they ask “How do you have sex?” (and they do), I’m being addressed as a cripple, not as a queer.

In many ways, I’ve not qualified as a man socially. I don’t have a job. I can’t work, mostly due to Hydrocephalus, depression and anxiety. I will probably never work, and therefore I will never be a “breadwinner.” I am not the only person assigned male at birth who won’t be a breadwinner, but as a disabled person I’m in a class of people who are far less likely to have access to sustainable supported employment across the world (especially women, and most of all, disabled Black Women and Women of Colour).

Not to mention the fact that access to benefits and financial security for disabled people in the UK is being bulldozed. We are being fed the lie that entrepreneurship, ambition and aspiration towards a more empowered life is one which is achievable through personal responsibility, and the chasing after stability and freedom. David Cameron’s “Paralympic Legacy” after London 2012, just like his Big Society, was designed to project these ideas, and it failed. In fact, both the Big Society and Paralympic Legacy are national embarrassments now which nobody – if they have any cultural awareness at all, and haven’t been sleeping under a rock – mentions anymore.

Lastly, being referred to as “man” just feels wrong. A woman in the street will say to her child: “Move out the way while the man in the wheelchair gets past.” And I’ll recoil from the words. Because she is treating me with respect (or rather, refusing to patronise me) by seeing me as a “man.” But I’ve had far too many experiences, throughout my life, where people (mostly men) didn’t. In fact, I often felt they had me pegged as “boy.” They would speak down to me, then up at their male friend who was standing at the same height as them, and the difference would be clear. Shopkeepers and barbers and barmen would call me “buddy”, “pal”, “boss”, male words but ones which grate because I also heard them referring to kids that way, and in exactly the same tone of voice, using exactly the same mannerisms. People have often treated me as a “man” in a way they don’t treat a man who is, for example, “dark, tall and handsome.” Or even able-bodied, fair, short and unattractive (indeed, social cues made me feel as if I fell out of the “attractive” / “unattractive” binary completely).

If I go back into my childhood, I remember being “different.” I hated football as I thought it represented competition, one-upmanship, and (I was told even before I could understand them) racism, sexism and homophobia. I loved drawing and painting, reading poems, music. I loved activities that didn’t require me to have to perform in front of, or measure up to, my able-bodied male friends (the possible exception was playing the drums, but even then, it’s not something I felt I needed to compete at, only one or two of my friends did it as well). I remember loving different kinds of toys, gendered male and female: Teenage Mutant Ninja Turtles and Bucky O’Hare but also Glow Worms and Sylvanian Families. I once bought a rainbow cap from the Back to the Future ride at Universal Studios, whose colours moved around when you pressed the surface of the cap with your finger. I had a lime green and neon pink scooter. I had a shell suit in exactly the same colours.

I loved The X-Files, and idolised Mulder and Scully not just because they were kickass but because they were helping to form my sense of my identity. In them, I saw aspects of myself. It didn’t occur to me they were “male” and “female.” They were just… me.

None of these things necessarily equal transgender. By themselves, they probably equal “odd boy.” And some of what I was as a child could be called “disabled” rather than “gendered.” But that is entirely my point. Disability and gender: they held hands. One was contained in, not separate from, the other.

I didn’t play with dolls. I didn’t wear makeup. I didn’t wear dresses (I don’t think). But I was different. I was soft. I wanted to escape the clamour, oppression and stress of everything the non-disabled world told me I had to be to validate my humanity. I wanted to be nothing but myself.

There is one memory that will always stay with me, and it’s just a snapshot. It may even be a combination of two memories. At preschool, we all had designated coat hooks, and each one had a picture on it to help us remember it each day. My picture was of a daffodil. I remember standing by it, my mother helping me on with my coat, and saying “When I grow up to be a girl…” I don’t remember what I said after that, but I was clearly convinced for a while as a child that I would change gender.

And now? Here I am. At 32, I am still trying to grow: to unlearn, dismantle, pick apart and push against the stuff society imposed on me that didn’t feel authentic, and take up stuff that does. Stuff which makes me happy, rather than asking other people whether happiness is what I should be feeling right now. After the last several years of seemingly lurching from one existential crisis to the next, every cry of “Who am I and where is God now?” I suddenly feel as if I’m finally getting to know.

I can’t remember when but not long ago I started calling God “she”, and seeing her as predominantly conceptually feminine. That was before I began to even think about myself as having a feminine aspect. I started to address my poems to “my familiars”: Quasimodo, Pinocchio, Queequeg. A bunch of animals. An angel. Champa the Moon Bear, a female Asiatic Black Bear, and the first bear ever to have keyhole brain surgery to implant a shunt for her hydrocephalus (a disability that we share). The lizards and mantises I have as pets. These projections of myself weren’t always female, and often weren’t human. But wherever my “gender” was among them, it was clear that I had entered a new phase of exploring my identity in a way that I had never felt the freedom or confidence to do before.

Perhaps the most important of these projections was Thomas-Mark or Evie-Lyn, the son or daughter my wife and I could have had. My wife (my partner at the time) had a miscarriage three years ago, at Christmas. All my adult life I had been told by doctors that because of my disabilities, my sexual dysfunctions, I shouldn't expect to have children. So I had given up on the idea, resolved that I would never be a father. But then it happened… almost. We had considered it a miracle. I still consider it a miracle, a fleeting one in itself but one that changed me from then on.

The first poem I wrote about Thomas-Mark or Evie-Lyn was “The Snowboy.” It became the title poem of my first pamphlet. And then I wrote the others, and each one was a similar imagining and projection of what my child might be like as male or female, firstly, and then what different-gendered Others, maquettes and monuments of myself, might be like. 

This blog post isn’t really about poetry. But that poem about a small snowman, about Thomas-Mark and Evie-Lyn, turned out to be very much about me.

On Facebook I now have a profile picture that says “Don’t assume I’m female. Don’t assume I’m male. I am genderqueer. I am both, I am neither, I am all.” In my profile, under “religion”, I’ve written the Apostle Paul’s words: “I have become all things to all people.” At the moment it’s meaningful in terms of the fact that my somewhat fluid sense of gender has opened me up to a new sense of relation to the world, and others (and more others than I’ve been able to for a long time, since losing trust in many “friends” along the way).

On Facebook and Twitter I’ve changed my name to an uncommon but established gender-neutral or feminine form of my name: Markie (also used by TV actress Markie Post, if you wanted to look that up). I decided on this name in one night of Googling. I’ve asked some of the people I think will understand to call me Markie, hoping that everyone gets used to it and it just becomes… my name (it’s not much of a stretch to be fair: ultimately it’s “ie” written down but still just sounds like a nickname some people have called me by, “Marky”). My name will still be Mark on the books I’ve published so far. And well, that’s OK.

People have asked me what pronouns I prefer. I’ve asked them not to use masculine pronouns (“he”), to acknowledge that I’ve made this change / transition. I’ve said that I’m particularly drawn to the gender-neutral “they / their / them”, and the feminine “she” is also fine. But I’m not going to enforce any of this. Just call me by my name, please.

I’d be on top of the world if you did too.

Thank you for reading,


Tuesday, 22 July 2014

Species News Round-up

As my first full poetry collection, Species, has been available now for roughly a month ("How time flies" seems appropriate, given the front cover), I thought I'd do a round-up of Species-related news and events so far, in the order in which they've landed.

1. First there were these featured poems on the Nine Arches Press blog. They are: '"Am I Disabled?" - A Self-diagnosis Questionnaire', 'Water Rail, with Moses', 'To My Kreeping Krypto-faith, Krampus', 'Deliverance', and 'To My Parallel-Parked King, Richard III.'

2. There was this interview on Polyolbion, the blog belonging to poet, bird journalist and label-mate, Matt Merritt.

3. There was this short interview with Jody Porter at The Morning Star in which, as well as talking about Species, I also took the chance to soapbox about my unwavering yet fraught and precarious relationship with leaning left (in body, mind and spirit) as a disabled person living in Austerity UK (TM).

4. Also in The Morning Star, and published on the same day, was this poem from the book: 'Standing is the Apples to Sitting's Oranges', which (I didn't realise at the time of writing it) could be said to be partly about that relationship, so I was surprised and delighted that it was the poem Jody chose.

5. No reviews have come in yet. I'll let you know if and when they do. But Jane Commane, my editor at Nine Arches Press, has kindly entered the collection into the Aldeburgh First Poetry Prize, so we'll see what happens. Fingers crossed.

6. If you're one of the people who have told me they wish they could have seen me launch this book / read these poems live (and even if you're not), thank you for your patience. Various physical and mental health-related issues have meant that the prospect of appearing in front of an audience has been too daunting for what seems like an age now. Disability and mental illness often feels like one push of the wheel forward, and two pushes back. However, I have started thinking with Jane Commane about the possibility of collaboratively reading with another poet. I won't reveal who has been suggested in case I'm jinxing myself and it falls through, but fingers crossed, and you might see me at some stage soon, on some stage...

7. The other day I posted on social media that I wanted to choose two poems to write short "essays" on, and asked which poems you would like to see written about. So far a grand total of one of you has responded with 'The Clobber Shop' and 'Silky Sifaka'. I'll resist the temptation to write anything about those here and now, but suffice it to say I've started generating ideas for them, so unless anyone changes my mind (speak now or forever hold your peace), they are the "winners." Again, I'm trying to juggle my writing time with my activism (which also means prioritising relaxation and self-care). So thank you for your patience on that one, and please bear with me. Those essays will appear here as soon as I can manage it.

In the meantime, if you would have come to a Species book launch and bought a copy there, please click on the brand-spanking-new image on the sidebar to the right, which will lead you to the Nine Arches Press shop, where you can buy it online.

Wednesday, 25 June 2014

2 Fun TruFacts

1. Species, my debut poetry collection, has officially flown into Nine Arches Press headquarters! You can grab your copy here, and read my very first interview about it, at Matt Merritt's Polyolbion, here.

2. In an incredible case of synchronicity, this week (the 23rd to the 29th June) also happens to be National Insect Week.

Wednesday, 18 June 2014

"What If I Told You...?": Disability Portrayal, Representation and the Abled Gaze

You might have seen the "What if I told you...?" Internet meme in which Morpheus, Laurence Fishburne's character from The Matrix, challenges us (who play the role of Neo, Keanu Reeves' character in the original film) to reconsider everything we were ever told about the way the world (or video games, or geek TV, or just... memes themselves) works. You are in the Matrix: everything you've been told is a lie. Nothing is the absolute, unadulterated, unfiltered reality that "everyone" (those inside the Matrix) thinks they are living in.

I'm often surprised, confused, frustrated and angered by the sheer amount of ideas, narratives and assumptions vast amounts of abled people have been led to believe about disability which reflect so little of my own experience, or the experiences of disabled people around me. These discrepancies often reveal themselves online, where what starts off as a perfectly innocent and friendly conversation between me and another person can leave me with the sinking feeling that something they've said feels not quite right, or even wrong and hurtful. And then, I can confuse them simply by pointing that discrepancy out. For instance, two of us can interpret an opinion or statement that, on the surface, reads exactly the same for both of us, in totally different ways. On my last post, I gave examples of these ambiguous or superficially-positive statements which often seem like logical and good received wisdom to abled people. If they're my friends, or peers I have to try to get along with, it's often difficult for me to say "Sorry, but I didn't get the memo. I don't agree." Either the garbled explanation I'd have to give for my differing worldview doesn't seem worth the effort, or I don't want to irritate them by seeming too "pedantic." So I often just agree. Take this relatively harmless opinion:

It's offensive to me that the Paralympics begin after the Closing Ceremony. The Olympics and Paralympics should be integrated.

As far as I can tell, this statement feels obvious to most progressive, inclusive abled people I've met, and for good reasons. Integration and equality are great ideas! But while there will be disabled people who agree with this statement (and disagree with me), it's a statement which one group will often see as wholly positive while a significant portion of another group will see it as problematic or wholly negative. From my perspective (for what it's worth), the Paralympics has its own Opening and Closing Ceremonies, and its own rich history that developed quite apart from ("in parallel to", hence "para") the Olympics. Disabled people often have a pride in this particular history which makes questions of integration between the competitions complex, and potentially fraught with hurtful disagreement. Personally I would rather that the abled majority as a whole stopped looking at the Paralympics as second-rate sport, have-a-go-games to be fully-validated only when disabled athletes are finally able to compete with "normal" people, the epitome and benchmark of health, ability and power. This widespread, patronising, unspoken assumption carries a whiff of abled supremacy that I don't like, that we should aspire to be more than we are, to be "able-bodied."

How does this happen? How can an abled person, who has had plenty of contact with disability issues and disabled people before, become so entirely convinced of arguments about disabled experience that they feel sure I will agree with, only to find out... I don't? It's disconcerting for them, and inconvenient for me, especially when I'm blamed for bursting their bubble, defeating a notion which they've previously held as gospel truth, for a very long time, with all the best intentions in the world. I'm talking about nice people here. Whether they remain "nice" in my opinion will depend entirely on 1) the nature of the issue, 2) how capable the abled person is of understanding that they've come to a completely different conclusion to me, and then 3) how that has happened, and why it matters. At this point I'll think they're more than "nice" if they can then hear my view without fighting their corner to argue, aggressively, that they are right and I am wrong, because it's patently, objectively, obviously true, and always has been. The evidence points towards it! (As I've said before, there is of course more evidence available to support their opinion than mine, because most evidence is developed in the abled sphere, by and for the abled gaze).

The "Gaze" is a concept formed and explored in intersectional feminist circles (there is the male gaze, the white gaze, the abled gaze, the cis/het gaze, and probably others I haven't thought of) and simply means the collective "eye" through which people of various majorities have been able to form their ideas, worldviews and perspectives about minority people. The "abled gaze" is the often prying, fetishising and infantilising gaze of abled society upon us, with all its potential for damage. By being aware and wary of the abled gaze, disabled people can understand, and react to, what happens when the abled majority (made up of their oppressors, from casually-prejudiced acquaintances to perpetrators of violent hate crime) has been allowed to look at us with, learn about us from, other abled people representing their own majority culture who speak "their own language." The abled gaze represents the ways in which abled society has looked at me (now and historically), asked questions about me, and acted on this "knowledge" given to them by other abled people without ever consulting me on its accuracy or usefulness. The abled gaze allows abled people to be fictional universe-builders, concocting entire disability stories about us, with narrative arcs and imagined histories informed entirely by abled media sources and creators of consumer product, without our consent or cooperation.

Contrary to widespread truths owned and shared in the abled sphere to be absorbed by the abled gaze, most Paralympians are not impatiently waiting for the day when they can finally compete with their more renowned and respected abled peers. Not every disabled person wants the competitions integrated, and for good reason. Before we even entertain the idea of integration, many disabled people want to be absolutely sure that it isn't happening too fast, and for all the wrong reasons (i.e. because too many abled people don't watch the Paralympics, don't take disabled athletes as seriously as their more "athletic" counterparts, and they would be more likely to do both if it was on in the same week as the Olympics). To seek integration and assimilation on these (often unspoken and subconscious) grounds would be to roll over and cater to the abled gaze.

If you've read my feelings on "inspiration porn", you'll know I'm not a great fan of clickbait sites like Upworthy and Buzzfeed, which are often guilty of sharing inspiration porn, as well as other forms of product to titillate the abled gaze. But this great video, a TED Talk by Australian comedian Stella Young, is a great exception. Young unpacks the term "inspiration porn", then succinctly gives examples of ideas that the material itself perpetuates: at best silly, and at worst, dangerous ideas about disabled people for the enjoyment and supposed benefit of abled people. Inspiration porn caresses abled people with the message that we exist to inspire them to live better, more fulfilling lives, lives which abled people will almost invariably think are more "fortunate" than ours (and they will be made to celebrate on that basis). I hope you can see that this demeans us, makes us lesser than abled people, tools to serve their emotional well-being. As Young points out, "Inspiration porn" will teach you that disabled people "overcome" our disability by beating the trappings of our bodies to perform arbitrary tasks that would be completely unremarkable if we removed the factor of disability.

Inspiration porn is relevant to this blog post for this reason: the abled gaze is addicted to it. Abled people lap it up. I see it on Facebook nearly every day, shared by people I interact with every day. And, predictably, when I share it in order to complain (even jokingly) about its faults, someone (usually someone who has shared it unironically, and doesn't want to feel bad about that) will tell me that it's cheesy, overly-cute, but ultimately fine: my opinion is invalid because it isn't the majority one. Not only does "inspiration porn" give a superficial or false "snapshot" of our lives and impairments, it makes no comment whatsoever on society being the ultimate cause of disability as a persistent social reality. Our impairments are not our fault. We cannot be expected to "overcome" or "rise above" them. Society must be accountable for the ways it excludes us, a fact that inspiration porn (and other ableist clickbait which fixates on our bodies and the wonderful things it can or can't do) is never interested in. The contemporary abled sphere has been able to capitalize on the abled gaze, the fascination felt by abled onlookers as a collective towards disabled people, to feed them with perspectives on countless disability subjects which are at best strangely at odds, and at worst inaccurate, offensive and dangerous to disabled people as a whole. The clichéd ideas and stereotypes presented by inspiration porn are shared and distributed among abled people for the eyes of abled people, for the abled gaze, and the result is that society as a whole is slowly, carefully, covertly, detrimentally and always irreversibly altered.

The abled gaze (which inspiration porn caters to, and lives and dies by) is big business. Corporations profit from it. It feeds capitalism. Money made from its "teaching materials" is used to oppress, infantilise and abuse others. Governments and media are able to capitalise on the abled gaze to guide and control what populations allow themselves to "know" and become comfortable with regarding disability. They can use the information gleaned from what abled people find "uplifting" and "beautiful" to impose oppressive policies on us, spread oppressive misinformation about us, which we will then have to campaign and push against in order to win back our rights, social mobility and autonomy. This wealth of product and information passed around the abled sphere as indisputable "truth" by government, companies and media outlets with a vested interest in hooking the abled gaze also works against disabled people on a personal level, who will not only have to combat this propaganda on a large scale, but also enter into conversations with abled "neighbours" who have debated with, learned from, been educated by, other abled people about us. If you are abled, you have probably bought these materials (or consumed them for free). You may have thought that what they told you was right and fully-representative of disabled people's lives, or, if not, at least it was harmless. And if not, at least disabled people were oblivious to what you were seeing, and will never be forced to know that you saw it. And if not... What they don't know about what you think can't hurt them, can it?

Well, yes. While abled people are passing "inspiration porn" and other product around for the benefit of themselves and (they think) the deepening of their own experience, disabled people (having been made into commodities, product re-designed and repackaged by the abled sphere for the abled gaze) are having to expand, deepen, correct and reverse what that abled sphere has told you about our lives and experiences. Not for your sake but for ours, so that we can live alongside you in peace. We are having to become more aware, more conscious, more "paranoid", of how your ideas will make you behave around us, towards us. At best, this discrepancy between what you've been told is the plainly obvious view thanks to notions you've picked up in the abled sphere (like "equality" and "integration", words which are often left vague and ill-defined, for you at least) and what disabled people have come to know for themselves, can be tiresome. At worst, the abled gaze, through which you have been allowed to "study" disabled people's lives through an abled microscope, has contributed to serious oppressions, policies and hate crimes. More on that below.

So how do you combat, push back against, the abled gaze? 

1. You can't. Not really. Never fully, anyway.

2. Assuming you still want to try: Be aware of it. Always assume there will be some discrepancy between the disability understanding given to you by other abled people and what disabled people themselves have come to understand about their own experiences, simply because you are abled and can't possibly expect to arrive at the same understandings. Be prepared to concede that if a disabled person says "What if you I told you...?", their opinion is always valid, and probably right. Be prepared to (silently) mull over their personal opinions and convictions from every single angle you can before (silently) disagreeing, if you do. Please don't publicly dismiss or dispute a disabled person's experience or perspective on their own identity. They will have probably predicted all of the negative responses you could possibly make, anyway.

3. Still reading? OK. Do your absolute best not to indulge in "inspiration porn" and other forms of tantalising product designed to turn on the abled gaze. Learn how to spot it, to interrogate it, to laugh at it, to get angry about it, and, ultimately, to dismiss it. If you find any reason to share it at all, if you have to enjoy the message at the heart of a cute meme, try to point out to people that it only represents one view, most probably an abled one, and usually a corporate one only interested in tugging at the heart-strings of abled people to win social media "clicks", not improving the lives of disabled people. When you share it, try to point out any problematic aspects there might be as well. (You don't have to do all of this at the same time.)

4. If you see what you think might be inspiration porn (or any other type of product designed for the abled gaze) shared by others online, on TV, film or Internet, point it out to them. Question them about its use on Facebook, Twitter or fan forums. Tell them to take it down if you think harm could be done by it.

5. Most importantly, allow the words, experiences and writing of disabled people themselves to filter through into your experience and understanding. Listen to us. Read us. Bend your ears and minds towards us, and if something one of us is saying requires you to perform mental backflips in order to understand it, make the effort. Usually we've had to make a double-effort to communicate with you; we know how many lies you've probably been fed. We know that what you've been conditioned to believe about us will not be chipped away at overnight. "But I don't know any disabled people" is never an excuse. We are still diminished and damaged by your ignorance, and all because we are moving through and interacting in different spheres, with different worlds.

6. Related to point 5 but I've isolated it because it is important: NEVER let a disabled person feel that what they've learned about themselves, their identity or their experiences away from your prying eyes and away from the abled gaze, is untrue, inadequate or misleading. NEVER try to turn disabled people away from their positions and convictions, towards yours. So your vision of disabled people's lives sounds tolerant, decent, true, harmless, even good? Congratulations! But your satisfaction should never trump a disabled person's fully-formed and informed experience which is highly likely to differ from yours. Disabled women, particularly women of colour and LGBTQI women, are in particular and specific danger from the abled gaze, and what can happen when they meet an abled person with false expectations of their characters, behaviours and bodies, and they dare to subvert them. Police violence against people they've viewed as stereotypes and clichés (not citizens with their own bodily autonomy, capable of controlling their own lives, even with help, when out of earshot of an ableist system) is currently a huge problem in the UK, where a growing number of disabled people are involving themselves in public protest. This is serious, and the abled media probably won't have told you about it. It sure as hell didn't tell me; I had to learn it from other disabled people, some of whom have experienced abuse for daring to push back against the abled gaze. Realise that if you want to push back yourself, there are no dangerous consequences for you; in fact, you are more likely to garner respect for it.

7. If this was a workshop, I'd ask you to write down 5 examples of Things You Were Told about disabled people by abled people which 1) you trust, seem like obvious received wisdom, even if you may not be completely sure, 2) you're not sure about, and you could do with checking against a real experience, and 3) have been proven wrong or inadequate in your dealings with particular disabled people, changing your worldview. If you've written lists 1 or 2, please assume that you might be wrong about everything on it. This is common courtesy, everyday humility, considering that your understanding and perceptions were formed in the "information superhighway" of the abled sphere, for the supposed moral or ethical benefit of abled people, and the entertainment and seduction of the abled gaze.

8. Call for more disabled self-advocacy in activism and political campaigning. Disabled people must be given the space to take the initiative and honestly bear witness to our disabled lives by ourselves, from our own points of view, away from the ableist propaganda machine manipulating and controlling the abled gaze.

9. Call for more disabled representation in the media: on page, stage and screen (for accurate, true-to-life characters who portray disability as more than the clichés and stereotypes the abled gaze has so often loved), in art (for non-normative motifs, images, symbols and concepts that disabled people feel represent and support their worldview), in the newsroom (for more accurate, detailed, impartial and unbiased reporting so that propaganda can be challenged and fought from the inside -- a pipe dream, I know). Not because it would make your world more "colourful". Not because it would satisfy political-correctness quotas, and more abled people would be congratulated for having a diverse outlook (an inherently abled gaze concept: abled people can win awards for representing us, showing us off to the world, even if they do it in superficial, fetishistic and dangerous ways). But because our lives, the ways our histories are written and remembered, depend on it.

Points 8 and 9 can be summed up in a phrase which landed in the laps of disability activists in the 1990s, and has since been the title of at least one book, and probably countless disability events: Nothing About Us Without Us. We cannot allow the abled sphere to create, and narrate, our lives for us, for the ultimate benefit of the abled gaze. While this is happening, we are still invisible.

By the way, in response to my own calls for more representation and self-advocacy, abled people have occasionally said the following. Like the Paralympics one, this statement reads entirely differently to them than it does to me: You have no right to a platform, no right to be listened to, just because you are disabled. And they expect me to humbly wheel away with my tail between my legs. But I don't, because I can remind them of all the abled people (specifically rich and powerful abled white men) who repeatedly find themselves in positions of power for reasons other than the fact that they are blindingly great at what they do (if they do anything): celebrity-worship, association with "friends in high places", nepotism, layers of automatic social privilege. I like to remind people that if the world wants a host of perfectly redundant celebrities, that's fine, but let's have more disabled ones! Disabled people need to see themselves as active members in the community. You do not have an automatic right, just because you're an abled person. But everybody has an equal right to be represented in positions which the world views as valuable.

There was a meme shared around Facebook during the London 2012 Paralympics, which said THE ONLY DISABILITY IS A BAD ATTITUDE. This text was emblazoned across a picture of a young girl with Downs Syndrome running alongside the South African "blade-runner" Oscar Pistorius, who, we now know, turned out to be the murderer of his girlfriend Reeva Steenkamp. Note the obvious irony in this. Aside from any immediate problems with the statement the only disability is a bad attitude (explained by Stella Young), can you even begin to imagine how dangerous it is that the statement was still allowed to live on as a "true" meme to be shared around the Internet and popular culture even after Oscar Pistorius was Photoshopped out of it? (Yes, I've seen a new version of the same meme, several times, recently.) Our culture considers it right to remove and disassociate the problematic phrase from Pistorius, but not to remove the phrase altogether. Why? Because it sounds nice. The idea that this isn't good enough, that in the light of Pistorius' crime we should change our perception of the statement along with the picture just because "people like me" say so, will be ignored across social media in general. Why? Because in popular Capitalist society, the abled gaze will always be prioritised over the ways disabled people themselves interpret its brands and products, especially in an age when disabled cultural critique and opinion is being further disenfranchised, labelled "extremist," and stamped out. Because memes don't kill people, guns do.

To reiterate, this could not be more important than now. Currently in the UK, many abled people are slowly realising that they have been conditioned to absorb the widespread, "righteous" notion that they should rage against "benefit scroungers" faking disability so that "genuinely-disabled people" (a problematic concept in itself: there's no such thing as a "fake-disabled" person) can get the benefits they deserve. Abled people, "taxpayers", have been made to support the dismantlement of our social security, our safety net, on the illogical basis that (they think) it's doing us a favour, and costing them less than the "scroungers" were (it's in fact costing a great deal more). Abled people, you could not be more wrong, but as long as you are allowed to view the world through your (unchecked and unchallenged) abled gaze, disabled people will suffer the consequences of your ignorance and obliviousness.

What if I told you that your awareness of the abled gaze, and your unthinking participation in it, could change my life for the better from this moment forward? Would you care, or does that not sound right to you?