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?

Saturday, 14 June 2014

"Not All Generalisations!": 10 Generalisations Abled People Make

If you use the Internet at all, and particularly social networks like Facebook or Twitter, you've probably heard the meme “Not All Men!” It represents a common reaction by men to what they feel are unfair generalisations made by women about the male of the species: “Men are violent. I hate men. You are PART OF THE PROBLEM!” “Not All Men” has been turned into hashtags, viral Internet memes, gifs, and T-shirts. It’s become a joke. A really, really funny joke.

I'm not going to (just) talk about feminism (even if what I have to say will be relevant to people on various intersections of oppression). I want to talk about the generalisations I am accused of making about abled people, even when I simply use the phrase "abled people" to mean abled society (which is not an abstract concept: society is filled with individual people, including you, and "abled society" represents anyone in that society without a disability). “Not All Abled People are guilty of ableism!” they reply. What's wrong with that?

Here are 10 generalisations that I hear from abled people frequently, which ring true for them in every case. They ring true because for them, there is no reason to think they would ever ring false. Until they meet me, that is, and I react negatively, and surprise them with my “wacky” (to me, obvious) interpretation of their generalisations. In writing these generalisations which all abled people make, I'm hoping to remind you that you do it too. While generalisations can be problematic, while we should be careful of, and deliberate with, the generalisations we make, there is nothing inherently or objectively wrong with their rhetorical use. They are a typical, common tool of rhetoric. They can encompass a problem, or a subject, or a truth, in very few words. We all use generalisations to save time, to have maximum impact on an audience quickly (which can then be unpacked, elucidated, elaborated on, with more discussion). Poetry is filled with generalisations. We remember generalisations. They stay with us.

So what's the problem? Often, abled people use so many harmless generalisations (or so they think) that they refuse to accept they've made any at all, even in the space of one conversation. Generally, people only recognise a generalisation when they perceive it to be aimed at them, which is very telling in all sorts of ways. So many generalisations are considered perfectly friendly, good, well-meaning, and totally true, depending on your perspective (and indeed, when abled people make generalisations towards me, I am always asked to believe they are all of those things), people can't avoid coming off as hypocrites if they tell me I'm making too many generalisations myself. My generalisations about abled people (which I hope stay with you and make you vaguely aware of general social truths, or I wouldn’t use them) are often a reaction to the inadequate, problematic, or downright offensive generalisations I'm forced to accept from abled people all the time (and I do, 9 times out of 10, out of what you call "common decency"). And the generalisations disabled people hear spoken to them are generally more harmful than the ones they make about you could ever be. If we make generalisations about you, you are unhappy. If you make generalisations about us, we are bullied, ignored, diminished, erased.

1.       “Not all abled people are ableist.”

OK, let’s get this one out the way first. This is the disability equivalent of “Not All Men”, and has exactly the same function, and the same major problem. Right off the bat, you insult my intelligence if you think I don’t already know that not all abled people want to commit prejudice, including ableism. Please assume that I’ve chosen to use the generalisation "abled people" anyway as a rhetorical device. Why? Because the situation is more complicated than what you think / don't think you do / don’t do to disabled people personally. Whenever ableism occurs, it is primarily able-bodiedness which is the overwhelmingly common cause of their ignorance and offence. Disabled people of all descriptions can agree on that, even though we must also acknowledge that intra-ableism (prejudice from one disabled person or subgroup towards another) also happens and is something to be aware of.

Secondly, if you're an abled person, and are saying “Not all abled people are ableist!”, I will assume that you know, intimately, what ableism is, what ableism looks like, sounds and feels like in all its forms and iterations. I will assume that you could recognise ableism not just when it slapped you in the face with a wet kipper (“Retard!”, “Spastic!”, "Freak!"), but when it gently kissed you on the earlobe (“We are all in this together”, a David Cameron-ism that the UK nation has rejected as being patently ridiculous, but which I hear from UK individuals every day, who expect me to take it as kind, soothing encouragement). The problem is that statistically, it is so highly unlikely that an abled person will not be more prone to being ableist as to make it not worthy of comment. And that's before we've even talked about systemic, institutionalised ableism. The abled world co-opts all of us into ableism in ways we don’t even notice. If systems, structures, institutions, organisations and services governed and staffed by abled people can show ableism time and again, people are complicit in that ableism simply by participating in them. None of us are exempt.

Finally, everyone who says “Not all abled people” is being ableist in these two ways. Firstly, they are standing up to remind me I'm wrong yet again (I already know I'm wrong by your reckoning; I expect to be considered wrong by abled people wherever I go). But consider this scenario: if a teacher has marked his 25 students’ exams and 24 of them got a D-, it does not make him wrong to say “You have disappointed me.” And if Darren, the only person in the class who got an A+, stands up out of his chair and says “Not all of us disappointed you!” he will probably get laughed at, by the class, and by the teacher, who was fully expecting that response from Darren. It wasn't needed. Secondly, you are giving visible, public permission to everyone else around us to opt out of ableism as well. On Twitter, statistically (yes, even if I've met you in real life), I don’t know you from Adam. If you (0.00001% of my Twitter timeline) are “not ableist”, that will only make you feel better about yourself (another feather in your cap of privilege, then, considering I've only taken you out of your comfort zone; I'm no real, genuine threat to you). But not only that. If 40% of my timeline is joining in with “Not me!” (and it happens), it doesn't matter that it’s patently untrue that 40% of any group of people are not ableist. Anyone reading our discussion is welcome to see your tweet, and take the (almost inevitable) majority side over mine, and then people will agree as a group that I'm wrong. Not only have I been told that a stream of people on my Twitter are not ableist; they’ve proved themselves ableist in their collective denial. You’ve proven my point about abled people as a corporate entity, by co-opting others into your ableism.

2.       “I treat everyone the same.”

This is definitely, demonstrably untrue. Always. You don’t treat your mother the same as you treat your father. You don’t treat your parents the same as you treat your best mate at the pub, your gay club crowd, your romantic / sexual partner(s), your work colleagues, or even your dog (who, let’s face it, is a person – you and I both know it). We put on different faces for different people, in different spaces. We can’t help it. We don’t always choose how our interactions will play out differently, they just will, instinctively, subconsciously. Therefore, especially when we come across people who are different from us (disabled and abled in this case), all sorts of confusions and conflicts can, and do, happen. So just because you've told me you treat everyone the same as a way of assuring me I will apparently receive equal treatment by you, I do not feel that reassurance from your words: I just don't know how you will treat me, as a disabled person, until I've experienced it. At best, I'm going to give you the proverbial side-eye. At worst, you've potentially lied to me, deceived me.

More importantly, though, even if you did live up to your gargantuan expectations, even if you did treat everyone around you equally, your equal treatment of everyone around you would not fix the general, systematic, global problem of inequality between us (disabled people) and you (abled people). I could love you more than words can say, and I would still feel the need to join my disabled brothers and sisters in raging against systemic ableism as a corrupt reality affecting us (yes, all of us) on a daily basis through all sorts of channels. Disabled people know that equality doesn't mean treating everyone the same. Equality means treating everyone with the equal amount of respect and dignity they deserve by virtue of being a human being. And this may mean treating other disabled people in all the various ways they wish to be treated, even if you have to endure several levels of culture shock to do it respectfully. Our society just does not do that yet, and won't for a very long time.

3.       “We are all just people.”

OK. We need to talk about the problem of erasure. Erasure is, in my opinion, far more pervasive, far more subtly manipulative and dangerous, and ultimately more hurtful in the long-term, than any ableist slur you could ever throw at me. Erasure makes me feel alone. At least if people are throwing slurs at me, they know I exist, and there is a certain amount of power in that. I can respond. But if you erase me, you reduce any power I have to react to your action. Here’s the thing: if you're an abled person, you have been trained to believe that it’s offensive, it’s ableist, to draw attention to my disability. To make me look like a freak by hurling slurs at me like, well, “freak”, “retard”, “spastic”, and all the others. And yes, sometimes that's true. But ableism does not stop at nasty speech, at slurs, any more than love stops at pleasant speech. Erasure means that even with the best will and intention in the world, there are ways to make me invisible. "We are all just people" is one of them. In a single sentence, you have made my uniqueness, my identity, my experience, and my pride in all of the above, melt into a puff of smoke that obscures both of us. And you think this will have the effect of making us equal, the same, blank slates. But if we are both obscured in a blanket of fog, if we both disappear, you have nothing to lose from that erasure. You can only gain. If you make us both disappear into "all people", it doesn't solve the problem of our inequality: if you are abled, you are already equal with other abled people at least. You do not need to exert your equality to anyone; it is already accepted. You do not need anyone to understand or support your comparatively minor physical or neurological differences. But if I need you to understand why my differences are important if we are going to keep talking, then saying “We are all just people” is like saying “You have no unique differences, needs, experiences or insights that I could possibly need to know or find interesting. I already know everything I need to know about you.” You have erased me.

4.       “I don’t like labels.”

Most people who have told me this were perfectly happy to tick “white / Caucasian”, “British” or “American”, “male” or (less often) “female” on a form. Some of them will include generalisation 3 and make it a double whammy of irritating: “We are all just people, I don’t like labels!” To begin with, by using this sentence, you are making it perfectly obvious that you are happy to be given the label “people." All people own and cherish labels they feel are useful, even if they do everything in their power to keep these to a minimum. But other people, even if they don’t like being labelled by others (with slurs, for example) have needed to find words to describe themselves. Disabled people have had to describe their differences from abled people. They have needed to form a vocabulary to help them understand and describe their uniqueness, and their struggles, relative to yours. Without these definitions and self-identifying labels, they couldn’t fight for their rights, their equality. They couldn't demand that their needs are met by government. If you have ever labelled me, that was bullying. But I want to define myself. I want to use my own descriptors and "labels." I want to hold onto them. And if you question them, or take them away, that is bullying. Being the kind of person I am, I will probably throw my relevant labels around like a baby throws food. I am a poet and have a pride in them. But if you're unsure, ask me.

Ultimately, if you say “I don’t like labels”, you are telling me that either 1) you are disabled, and you really would like abled people to stop labelling you as an oppressive act, or 2) you are abled, and have had the privilege of living an experience which you were made to think was entirely and utterly "normal." You have had the privilege of being able to go through life being generally thought of as "just a person." You have enjoyed an existence in which by and large, your identity was accepted as second-nature to your inner self. Your chosen self-identifiers, your labels, have been universally accepted, respected, and reciprocated. So accepted, in fact, that if you threw them away (and you really, really want to, don't you?), you would still be given the humanity you deserved by society. Those around you generally already see you as a person worthy of dignity (and not, say, a freak, part of the “underclass”, or a “scrounger”). That’s not true for disabled people, people with disabilities (PWDs), crips, spoonies, bendies, people who are deaf or blind, or have any number of impairments and health difficulties. So if they wave their chosen self-identifiers around like banners, you can be sure they need them, or they feel erased.

When you tell me you don't like labels, what you are really telling me is that your labels are the only ones we’re allowed to bring to the table in this discussion. Your identity ("just a person") needs to be respected. My identity ("yes, a person, but...") does not.

5.       “But if I was disabled, I would just want to be thought of as a person.”

That’s great. But here’s the thing: you are not disabled. So therefore, you have no idea what you’d want from other people if you became disabled. Not to mention that what you wanted from other people would vary depending on what impairment(s) you had, and what life experiences it had given you. Disability changes your outlook, your worldview, as well as your body, in ways that are impossible to predict. The chance to be seen as "a person" is a privilege that many disabled people just don't have. Historically, physically-disabled and neuro-divergent people like me have been thrown into asylums, freak-showed, demonised. More recently, we've been made to look like inspirational children, morality tales, superheroes, burdens on the State, scroungers, the cause of the financial crash. You and I can't possibly wipe that slate clean in a single conversation. Many people say to me kindly "I don't think of you as disabled," and then wonder why I find that insulting. The reason is that before you can say "I don't think of you as disabled", I want you to show me that you acknowledge my disability as part of who I am as a person. Why do you have to avoid thinking of me as disabled in order to view me as a person, especially if I've chosen the term? Is it because you associate the word with tragedy, hopelessness and shame? Because I don't. Before you call me “just a person”, I need to be perfectly sure you know (and society knows) that a person is allowed to call themselves a “disabled person” and still command your respect. Disability is not all of who I am. But neither is it none of who I am. It is not a sin that I want brushed under the carpet and forgotten.

6.       “Disabled people have so much to teach us!”

This is a genuine, unedited quote I read on Twitter a while ago, written by a person who was non-disabled and called themselves an “advocate” for disabled people. As a non-disabled, self-confessed advocate, there was always a chance that this person could fall into several traps by making a generalisation like this, and lo and behold, they did. Here's the thing: “teacher”, “motivator” and “self-help guru to abled people” are not social roles which disabled people as a homogeneous group have chosen. Their only task is to exist in the world, for themselves, which is hard enough already. If you think they exist to enrich your life (and they are aware you do think that), you are using them for your own emotional gain: to feel better about yourself by comparing your privilege to our "tragedy"; to become motivated to fulfil that dream you always wanted to (disabled people have to abandon dreams as they get older, just as you do); or to teach you life lessons that will make your able-bodied life a less ignorant one for your own sake. So that you can have an easier time trying to get along with us without putting in any extra effort.

This whole attitude might look patronising, but otherwise fairly benign. It isn't. It can be very, very dangerous. It becomes dangerous when we, as disabled people, don’t motivate you; when we don’t “tell you what you want to know" in a way that you find adequate, helpful or respectful. I have had people proverbially “ask for their money back” when they haven’t felt any number of desired feelings on reading my words. I have had abuse in the street for refusing someone's words that they felt were kind, but I felt threatened and patronised by. The fact is, you could become openly hostile if I, as a disabled person, do not act or respond in the way the abled world has taught you I should act or respond, according to a list of stereotypes it has written me into: "teacher", "motivator", "inspiration." (We have a word for Internet clickbait which does this, by the way: "Inspiration-porn.") These enforced roles and stereotypes, if we've dared to subvert them in front of you, have often been the cause of hate crime.

I am not a dispenser of feels. If you want to be made to feel better about yourself and the world, watch any number of TV shows on Netflix. Here's the thing: some disabled people do want to be teachers. And if one of them chooses to be a teacher, or an activist, or a blogger, they are reaching out to you and asking for your understanding and cooperation in a world in which they are significantly less likely than you are to be awarded a job as a teacher. (Even if you’re a bricklayer, this still holds true if you are an abled person.) If you want a disabled person to teach you, pay them, or you're assuming that something you would have to work at yourself can be freely given away by disabled people just because their unusual experiences fascinate you. Otherwise, if I do teach you something for free, it's your turn to be grateful, or you have a double standard. You're not entitled.

7.       “Abled people have their own issues to deal with.”

I’ve included this generalisation because I don't want you to go away thinking that generalisations are always wrong, or bad. This one is right, and fine. Of course abled people struggle too. Abled people can also be black, LGBTQ, women, struggling at work, at school, with families, financial situations. Life is difficult, in various ways, for everyone, right? But firstly, no: not everyone feels that life is a constant struggle; some people love every second of life. To say we're "all in the same boat" is the mother of generalisations. Secondly, no one who is abled (in the body and mind) can say they have lived, experienced or understood the struggles of disabled people on top of the struggles we all generally share in common. So you cannot imply that, while you have issues, they are related to mine in any but the most superficial of ways. So reminding me that you struggle too sounds to me like a passive-aggressive denial of the differences between us. One of those differences between us is that of choice, opportunity, privilege: your struggles, to a large extent, will be diminished when you can find other people to share them or relate to them. Disabled people will find it far more difficult to find people with shared experiences, especially in real life, especially if they are house-bound and can’t go out to meet people for moral support and friendly company (which is hard enough anyway if you have mobility problems, depression and social anxiety), and especially if they can’t afford to access online communities (besides, while online social networks can be a genuine support, they don't have exactly the same effect as face-to-face communication, eye or body-contact, and don't fully alleviate loneliness). Remember: disabled people are 70% more likely to be living in poverty. "Abled people have their own issues to deal with" sounds like a refusal to engage with us.

8.       “I support your disability rights cause. I am an ally.”

As someone who spends their time doing online activism, I know this is demonstrably untrue if: 1) you are fighting me on the Internet, 2) you are prioritising your own experience over mine (the world already does that for you, I don't need it), or 3) you are telling me that my methods (my communication, my activism, my ability to reach people, to reach a demographic, an audience, you) are not working, are "ineffective". Firstly, are you sure it's not just that you're not listening? I don't remember telling you you weren't part of the audience; you've decided that, especially if you've clicked "follow" on Twitter or Facebook. Given the amount of exclusion disabled people face from abled events, if you're not into me, that's not even a drop in the ocean. Secondly, you have no way of proving my ineffectiveness. I have edited an award-winning poetry anthology online, Fit to Work: Poets Against Atos, a collection which brought together writers of all kinds, many of them disabled themselves, in protest against the UK government's Welfare Reforms. And I currently have 730 followers on Twitter who are happy to read what I have to say, and believe what I have to tell them. Most of those followers are abled, I think. A minority of them are disabled activists themselves, and we exchange information, support one another, and find one another in our shared experiences. Activism is as much about oppressed communities mobilising and supporting one another as it is about you -- arguably more. We make ourselves visible.

If that’s not “effective” because you (an abled person) have a different definition of what “effective” means, you are getting in my way. You are being the opposite of an ally; you are being an opposition, an antagonist, part of the problem. Ultimately, if you are taking away my right to choose (and reject) my own allies based on how supportive and beneficial I find them to be, you are taking away the power and agency of another disabled person, thus doing your bit to add to the oppression of us all. Failure to realise this has caused people who in their hearts were supporters of disabled people to be hurtfully dismissive towards my points and ideas (in a few cases repeatedly, for weeks and months) then, when I say that something is wrong, defend themselves and their actions by saying "But I am an ally!" One particular person (I won't name them) once effectively told me that my activism would have gone nowhere without their ideas and encouragement. Even if they were right (they weren't), this would never have been OK. To say they were entitled to my gratitude because of something good they did once when I also faced regular push-back from them was out of order. I get to decide whether what you're doing counts as allyship. You do not.

9.       “Disabled people need to be heard.”

I’ve included this one because again, it’s relatively harmless. It is a generalisation and a truism. By that I mean that it's generally true, and I would think you were a nice person if you said it to me. So what's the problem? Well, there are disabled people I disagree with. There are disabled people who (I think) are actually talking out of the wrong orifice; and who (I think) are so detrimental to the cause of disability rights, they definitely do not need to be heard. (If you’re disabled you may know who I’m thinking of. I’m pretty sure he’s a Tory plant, and he worked for Atos at one point. I do not think this person needs to be heard or even linked to, so I'm not doing it here.)

Anyway, my point is this: a perfectly useful statement which is true in itself can still be a generalisation with exceptions. You don’t need to listen to all of us. You don’t even need to listen to me. But as someone from an under-represented minority, I know that whatever I say on the Internet, as long as I keep remaining visible and making a lot of noise, I am adding (in my own, very small way) to the volume of disabled voices that, on a wider cultural level, needs turning way the hell up. So if you’re getting in the way of my voice, regardless of your intentions, and regardless of how wrong you think I am as an abled person, you are still proving something that disabled people already know: abled people feel an automatic entitlement to get heard, which trumps the same right of disabled people. You are turning our collective volume down, even if you’re just one person. (As I've said, if “just one person” is popping up all over Twitter, “just one person” becomes a cacophony of "just one people.")

Lastly, "disabled people need to be heard" is just so obvious as a point, to read able-bodied people stating it as a generalisation all the time is just exhausting. You are reminding me that not only do you live in a world where you already get heard automatically, you will also get heard now, when you remind your able-bodied peers (who far outnumber my disabled ones) that I need to be heard. You are acting on my behalf instead of, you know, hearing me. Consider this analogy: remember those memes featuring a big butch man wearing a T-shirt that says "I NEED FEMINISM" or "Real men look after women"? These are problematic. For one, men definitely do not need feminism to get by in society. Men will get by perfectly fine without it. Women do, though. Feminism is for the benefit of women. The T-shirt that says "Real men look after women" sounds like a lie because, apart from the fact that a man has felt the need to show himself off saying it, we have no evidence that he lives by the philosophy. He needs to treat women better, not take selfies. If he does, he won't become famous on the Internet (never the point). But he will be treating women better (always the point).

For disabled people (for me, anyway), hearing good truisms like "Disabled people need to be heard" spoken by abled people is fine, but it's still them talking about me on my behalf, telling other non-disabled people to listen to me, instead of actually listening to me, and enabling others to do the same. If non-disabled people think we should be heard, I would much rather they link to our articles, recommend our blogs, or that people follow us on Twitter. Nothing About Us Without Us. Wherever possible, it is important that we are allowed to be our own mouthpieces; it's much less important that abled people get to shout about being on our side, except to one another, in real life situations, sometimes. (Note: in social situations where you need to be someone's mouthpiece, that's a very different and good thing. But the assumption that we need abled people to be our mouthpieces is so common and widespread that when somebody can speak for themselves, I would rather they were pointed to, raised up, given the opportunity to self-advocate.)

10.   “I don’t make generalisations.”

Hopefully I've proven that this is patently untrue, so that next time you say this and I laugh at you, you’ll know why: you've made a generalisation. It’s OK. We all do.

Thursday, 12 June 2014

15 Signs You Have Abled Privilege Online

As a poet and "Twitter Activist" (I tweet a lot, often angrily, about disability, ableism, and other social justice and identity issues) people ask me what I actually do (I think they mean "How many protest marches have you gone on? What was the last campaign you drove to parliament in a private vehicle?"). I write. I talk, converse, share statuses, tweet. Through interacting online, I see first-hand how prejudice plays out not just in real life, but between people who can't even see each other. I'm interested in the fact that so much of our "Self" is assumed to be visual and physical. Online, we hear the terms "privilege" and "oppression" (usually spoken in angry, "off-putting" tones) and simply can't work out why a fun pastime like the Internet would be an exhausting and demeaning experience for people who are part of historically-oppressed minorities. They're invisible. Nobody knows who they are, do they? Language is neutral, isn't it?

Wrong. "Internet activists" know that prejudice reveals itself most subtly in writing: rhetoric, tone, gesture, phrase, argument. Oppression / Privilege dynamics play out online, purely on the level of language. All the time. By accident. By good, well-meaning, self-confessed "nice" people who simply can't see themselves in the language they use. I can't speak for others' experience, only my own, which I have daily when I bring up certain subjects relevant to my own identity, both physically (I have Spina bifida, which affects the way I view the world as I move through physical space) and neurologically (I have Hydrocephalus, which affects my cognition, my perception, my memory, my mental health, and my emotions). Ultimately, disability is an impairment and a worldview. So without further ado, here are:

15 Signs You Have Abled Privilege Online

1. You can expect even your most "radical" opinions to be considered to be within a range of "normal". Even if they make you a "Loony Liberal" or "Leftie", most people around you will have heard them before. But disabled people have been labelled "extremists" for stating what to us is the obvious to others who found it unsettling.

2. Whatever the lifestyle topic du jour is, you can expect to find majority support and agreement, somewhere, before the end of the day.

3. You can expect to know where the line is drawn between "reasonable / civil debate" and "out of control argument", because:

4. You have been allowed to draw that line, so you are allowed to "politely" claim the right to redraw it if I try to scrub it out (at which point I will be accused of "moving the goalposts").

5. If I react angrily to you and "throw my toys out the pram", you have an entire history of ableist, infantilising metaphors to choose from to describe my "irrational tantrum" (I've used two in a single sentence). History has given me no insults for your cold indifference to the topic, making you the inevitable winner every time.

6. You can tell me a word like "retard" is not an insult because you found it in a medical textbook. But I can't tell you that medical textbooks aren't exempt from ableism. I can't tell you that abled people wrote your medical textbook, because that will be interpreted as an insult to abled people, an "Ad Hominem attack," which will consistently be more important than the hurtfulness of the word "retard".

7. Speaking of Ad Hominem attacks: you can expect the majority of your online peers to find the Ad Hominem attack in my words. I can't expect to be taken seriously when I interpret your words as an Ad Hominem attack against me. You have a thousand ways to keep that hidden. In real life, I could take the look in your eyes, or your body language, as an Ad Hominem attack. You just wouldn't know if I had. But if I can read it in your words, I'll make sure you know about it.

8. You can afford to believe "Politeness doesn't cost you anything", when it regularly costs me my self-esteem, my own confidence in my convictions. Having to constantly be polite to abled people opens me up to gas-lighting: I can be manipulated into questioning whether I'm wrong just because history has given you more "objective evidence" to draw from, evidence which confirms your point-of-view, and dismisses mine.

9. You can expect to be able to offer a criticism of me on the basis that you're just "concerned about me." But I can't question your "ulterior motives", because you didn't explicitly state them. I am forever destined to be "reading between the lines", thus wrong and out of line.

10. I can’t reject your concern or charity without being thrown into a historical “angry cripple” stereotype category. History has ensured that you always deserve my gratitude. No matter how threatening or forceful I find you, you may get angry if I even politely reject your concern. You may have been conditioned to feel entitled to help me. “Charity” was defined by abled people, and they win awards for being good at it.

11. You can expect your "angry" persona to be amusing, ironic, endearing. But thanks to history's portrayal of angry cripples, I can expect to sound scathing, bitter, immature, "counter-productive."

12. You can expect to find support when you call for the free speech of people who look like you. If I call for more representation of people who look like me, I will be called "politically correct," even selfish. If I say that efforts to suppress my own free speech are commonplace, I will be called a "conspiracy theorist."

13. You can expect the words “I’m not disagreeing because you’re disabled, I can't even see you” to sound reasonable. But I can’t reply “I have my opinions because I’m disabled.” You call that bringing unnecessary context to the discussion. You see that as irrelevant, even when you have your own opinion because of years of abled privileged. (That'll be another Ad Hominem attack, rather than obvious, relevant, even benign context.)

14. You can expect to be able to say “This wheelchair-user's opinion is such an interesting, new perspective to me." But you are insulted when I say that your perspective, developed through years of being an abled person, is old, counter-productive, and insulting to me. If it sounds new to you it's because you haven't had to hear it thousands of times before. (This also applies to jokes in Real Life: if I had a quid for every time someone has said it would be funny to strap a rocket pack to my wheelchair...)

15. If you tell me I've insulted you, you can expect me to understand why. You can even expect me to go away and think about what I've done. I will, sometimes for days, weeks, months. You probably won’t. Our negative interaction will affect my health.