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Note: This is a slightly-edited version of a piece I originally posted to my blog, Naming the Beasts. It describes my own path, journey, and relationship with my own disability and gender. Other disabled people will have different responses to theirs. Some will feel the need 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. Disabled cis men who have been demasculised by an ableist society may want to exert and emphasise their masculinity as their response. My conclusions on my own gender should not be taken as criticism or erasure of other disabled people’s choices. But they 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, 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 experience, acceptance and conceptualisation of my body has had to transcend the ‘man / woman’ binary. It has had to go beyond that binary for societal, political, personal and private reasons. The types of embodiment, categories and boxes handed down to me by non-disabled cisnormative 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, secure and at peace with myself since I realised I don’t need to try anymore. I can carve out 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, something I thought was required for me to even have the right to identify as trans?
The most common trans narrative is that if you experience bodily dysphoria – that is, an intense, deep understanding that your innermost self does not align with the sex you were assigned at birth – you are not cis. You are trans. This narrative is summed up 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 their internal sense of self. They are driven to mental health problems, self-harm, phantom pain. In everything that they are, they know 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 cover it now, but plenty of evidence suggests that narrowing us down into two sexes excludes people who are intersex, and also people who have various disabilities and conditions which present them with bodies that veer from prescribed gender ‘criteria’).
This physical, bodily dysphoria is the one that most people wanting to know what being trans ‘feels like’ will read about.
I now know that one doesn’t have to feel bodily dysphoria to identify as trans; a mere disassociation with your assigned sex 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 – without taking into account the intersection of disability and gender together – the ‘wrong’ body and the ‘right’ body are still both a non-disabled body. Gender dysphoria (we are told) is an uncommon, unusual experience relative to most people’s experience. Disability is not. But there are no lines drawn on your body to distinguish bits that are gendered from bits that are disabled. So how would you know?
If I lived in your body
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 that bodily disparity from the message: your body is inconvenient, freakish, and unwelcome?
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. Bodily gender dysphoria? I don’t know. Mental and social dysphoria? Slightly easier to disentangle. But 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 impossible to disentangle what we were coercively led to believe, and what we chose) to describe a gender which falls in between or outside the male/female binary; a gender which is both, neither, or all.
‘Dis-cis’ and ‘disgender’
I also have other words to describe my gender which acknowledge that it’s inseparable from disability. 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. I have lived my gender through the filter of disability. I’ve seen the world through the lens of disability.
Two of these 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 just mean ‘made less cis’ or ‘made less gendered’. 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’ (hydrocephalus gives me a certain amount of hypersensitivity to emotionally traumatic stimuli – I consider myself less an individual than part of a disabled community; when that community hurts, I hurt).
To explain these disabled-gender words, 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 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.
In contrast, the social model relocates the source and cause of our ‘disability’ to society. We have impairments: our physical and mental disabilities, conditions and illnesses. They cause us pain, and none of us are exempt from the possibility of experiencing that pain. But our Disability, or disablement, comes from the inability of our bodies to participate fully in the world. Disability becomes not what’s inherently and solely our fault and responsibility, but the ways in which we are oppressed: factors such as 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.
‘Disabled’ does not mean ‘unable’
These have been our disablement. Our bodies bear the brunt of it, but they are not its inevitable cause or reason. Our bodies can’t be 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 amounts to our Disability. So under the social model, ‘disabled’ does not mean ‘unable’. Disabled is what we are made. Another word to describe it could be ‘disempowered’.
For me, this disempowerment has extended to gender. It includes demasculisation, or, if you like, ‘dis-masculisation’ (male privilege notwithstanding: if I am gendered as ‘male’ by others, I can benefit from that privilege 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 a global standard. Over a lifetime, I’ve been slowly and gradually made ‘dis-cis’ and ‘disgender’: constructively dismissed from the non-disabled, normative gender binary.
How, exactly? 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 neurodivergent) – is spina bifida, a spinal birth defect causing, among other things, some paralysis, with loss of sensation, on the lower half of my body. This has meant what is known as sexual ‘dysfunction’ by non-disabled standards. I find erections difficult to achieve. I very rarely ejaculate. Incontinence is a by-product. So I’ve discovered that sexual activity which does not 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 involved my genitals in sex again, if I never even saw my genitals again, I would be perfectly content with my sex life.
I’ve not qualified as a man
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 heterosexual men often have difficulty ‘figuring out’ how queer women who ‘can’t perform penetrative sex’ (hint: they can), have any pleasure at all in sex. What do they even do, and what’s so great about that? I laugh when I hear their question. But I don’t feature 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 (and a range of cognitive difficulties), depression and anxiety. I’ll probably never work again. 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).
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, by chasing after stability and freedom. David Cameron’s ‘Paralympic Legacy’ after London 2012, 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 haven’t been sleeping under a rock – mentions anymore. The overwhelming pressure to contribute to the economy as a moral responsibility and obligation or be condemned as a lazy ‘scrounger’, part of the Something-for-Nothing Culture, has dogged me all of my adult life. And it’s come to a head during David Cameron’s government.
They had me pegged as ‘boy’
So being called ‘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 standing at the same height, and the difference would be clear. Shopkeepers and barbers and barmen would call me ‘buddy’, ‘pal’, ‘boss’ – masculine words, but ones which grate because I also heard them referring to kids that way, and in exactly the same tone of voice. People would often treat me as a ‘man’ in a way they didn’t treat men who were ‘tall, dark 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 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 played drums as well).
I loved 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 shamelessly loved nature walks (what boy doesn’t?) but would make daisy chains on the school field, hiding them behind my hand so that the boys couldn’t see.
I was Mulder and Scully
I loved The X-Files, and idolised Mulder and Scully, not just because they were kickass but because they were helping to form my identity. In them I saw aspects of myself: the problematic, imaginative dreamer aware of a vast network of paranormal conspiracies, and the deeply spiritual sceptic with equal amounts of warmth and snark. 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 all that 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. The picture on my coat hook 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 when I grew up.
And now? Here I am. At 32, I’m 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 answer the question.
I started calling God ‘She’
Not long ago, but before I consciously thought of myself as having a feminine aspect, I started calling God ‘She’, and seeing Her as conceptually feminine. I started to address poems to ‘my familiars’: Quasimodo, Pinocchio, Queequeg. A range 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 were not always female, or even 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 I had never felt the freedom to do before.
The most pivotal 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, firstly, what my child might be like as male or female, and then what different-gendered Others, maquettes and monuments of myself, might be like. This piece 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.
All things to all people
I recently changed my Facebook profile picture to one 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 St. 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 way of relating to the world and others (and more others than I’ve been able to for a long time, having lost trust in many ‘friends’ and ‘allies’ along the way).
On social media I’ve changed my name to an uncommon but established gender-neutral or feminine form: 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: ‘ie’ written down but, to the ear, still the nickname some people, like my dad, have called me all my life). 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’), out of respect that I’ve made this change. I’ve told people 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,
Markie Burnhope is a poet, editor and activist whose work has appeared in print and online. They are the author of two chapbooks: The Snowboy (Salt Publishing, 2011) and Lever Arch (The Knives, Forks and Spoons Press, 2013). Their debut full collection, Species, was published in 2014 by Nine Arches Press.