Welcome to Kroppsfunktion – a choreographic festival. I’m glad to see you here. I’m honored to present Christine Bylund. Christine is a performance artist, writer, a norm critical thinker, interested in power, sexuality and functionality. She’s engaged in the Swedish independent living movement and a master student in gender studies.
Christine will talk about functionality and femininity in the making of gender: how some genders are preferred, some unwanted, and how one can reclaim or recreate a gender identity.
I’m very happy for this. Welcome!
It is a dance festival where we talk about bodies and movement. I want to begin with a circus trick. Do you like circus tricks?
Great! It would be great if I could get this kind of track runner’s applause, like at a Stadium.
Thank you. Did I inspire you?
Fantastic. So I fulfilled my role as a disabled person in the arts. So we can move on to talk about other things. As Zafire said, my name is Christine Bylund. I’m a crip and femme identified stage artist, writer, producer. I sometimes do dance and circus. Today I’m here to talk about gender identity and disability or ability. I will begin by showing a literary review. These are the texts I will be referring to. I will do my best to visually interpret the images in my presentation.
My literature is as follows:
The article “Dares to stare” by Rose-Mary Garland Thompson in “Bodies in Commotion”.
A fiction piece by Lesley Freeman in a book I highly recommend – “Femmethology”.
Another article from “Bodies in Commotion”: “Men in Motion” by Leonor Manderson.
An article in the Scandinavian gender studies journal NORA: “Turning like a Femme “by Ulrika Dahl.
A short extract from another fiction piece: “Origami Striptease” by Peggy Munson.
“Feminist, queer, crip” by Alison Kafer.
“Crip theory” by Robert McRuer.
Another article from a really great academic journal – Disability Studies Quarterly. It is available online with open access so anyone can reach it: “Threads of Communality in Transgender and Disability studies” by Ashley Mog.
But let’s begin here, in a snowy farmhouse, in the rural part of Sweden. This is where I was brought up. We’ll begin in the year 1994. It is an important year in terms of disability rights, and the implementation of the law on personal assistance. It would grant freedom to many people in Sweden. But it is yet not a year of national celebration – for freedom is still not granted for disabled people right now. It’s important to mention these historical turning points: Sweden is a nation of quality but we are still not where we would like to be.
It’s 1994 and I am 8 years old. If you were around, you know that the musical theme was Ace of Base. Maybe the song The Sign was playing. I am walking with my walker, it could have been this one because I haven’t changed it since I was ten. It has now gone out of stock in all accessibility and help centers in Sweden so if it breaks, it is perhaps the end of me walking. I’m wearing a white blouse and a blue cardigan with little balls. I have blue jeans, and laced up boots. I’m feeling the bomb. I am walking in a corridor in my parents’ house. Something revolutionary has happened to me. I am 8 years old but I feel like 15.
It is a revolutionary feeling because even though I’m 8 years old I know others see me as 5.
When I am 15 years old I know others see me as 10.
I am 29 years old but I know others see me as 15, 10, 8 or 5.
I know they see me this way because there is an understanding of what a disabled person is in our society. I’m supposed to be small, frail, sweet and cute but foremost, I am pitiful. People feel sorry for me.
Being 8 years old I know this. I’ve had many experiences to affirm this notion. But I also know that because they think that I am five when I am eight, they think that I’m the smartest five year old they ever met. I have such a vocabulary, I’m a genius with the language – it’s great, I’m really smart. And I could be a language genius. But wearing this cardigan and blouse, feeling like I’m 15, I feel like I’m dressed right. The outside of me is telling something about my inside that I feel is right. It has very little to do with gender at this moment and much more to do with my identification as a crip. I didn’t use that word at the time. I’m dressed as a trickster almost – someone who turns perspectives and notions of disabilities.
I was dressed like a femme. I will talk about my understanding of these two concepts.
But first, I would like to talk about this. We talk a lot about ableism in crip theory as a structure in our society or a cultural understanding about what ability and disability is. Ableism promotes a certain kind of physical or mental ability and hinders people who derivate from this certain standard. Ableism is good at enabling the able-bodied. If you are able-bodied in any way, it is normal that you haven’t thought about ableism. Everything is built for you. You access society smoothly. That also means that ableism is a systematic tool of power that will marginalize certain groups of people. Because society is built in a certain way that enhances living conditions for a certain group, and decrease them for another group.
It is also central to our understanding of beauty, worth, capability and profit in this system. This is represented in architecture. This stage didn’t have a ramp by default. I’m happy there is a ramp now. But when this space was built, who was intended to be in it? This is true about all spaces – the subway, my university where I study. It’s not true about my workspace because it’s a disability-oriented space.
Ableism also shows in discourse: this notion that I am frail and pitiful. It shows in media representation, laws and politics.
Let’s go on to talk about crip. It’s funny to cite someone who’s in the room. We can talk about it if you feel misinterpreted. Crip is a position and a perspective. It is the notion that ablebodiedness is a social construct used to marginalize those who don’t fit its assumptions. Crip is a personal position of resistance and awareness.
My crip role model friend, academic and dancer, Lesley Freeman writes: “Crip is a sense of power; it is a position of power and control. It is owning and rebelling against the understandings of ability and dis/ability, beauty and ugliness that society has given me”. Lesley uses writing as an act of visibility – to show the construct of dis/ability. She writes dis/slash/ability. What is “dis” and what is the “ability”? It’s always a construct.
I write: Crip is refuge. Crip is a political standpoint and the understanding that my marginalization is not my body’s fault and that it never was. To claim crip is to be politicized, to be both a threat and promise. When I enter a room, my body carries a cultural stigma. It does that even when the space is accessible, as soon as I’m around someone whose body is socially constructed as abled. It also carries a threat: You could all end up here, you could all be me. Does it bother you?
When I was eight but felt like 15 I didn’t know I was experiencing what Alison Kafer calls crip time.
To crip time is to break, reshape, elongate or halt time. It is akin to what Jack Halberstam would call queer time: that we have a certain notion about time. We are supposed to do certain things at different times. It’s related to gender, sexuality, forming relationships, getting married. Time and what it does to our understanding of ability has been overlooked but is being introduced now. Time is a gatekeeper in deciding who is disabled and who is not. How long does it take for you to do this? When did you figure out that you could do so and so? When did you acquire these certain abilities? It’s interesting when we talk about kids growing up and sharing progress and abilities with your family and friends: first steps, first words. What happens if you can never share first steps with your social group? I was seven years old when I took my first steps. That was cripped time: I was outside what was expected of me. That meant that my mother couldn’t be excited about my first steps. If she says that, that’s instantly inspirational – “how great that Christine is overcoming her disability now! Life will be so much easier!”. That is true, but an important question to ask why it would be easier.
I’ll move on and talk about the body as a stage. It is something that you almost inherently learn if you live long enough with a physical or mental disability. The body is not merely flesh and bones, it is constructed within its culture. And what a body does is physical but also environmental – it’s in relation to its environment and whether it’s accessible for me or not. It’s also cultural: what possibilities do we ascribe to certain bodies? Is there a possibility to represent gender in a certain way for a person with a disability?
Are there other possibilities that are culturally ascribed? What happen if a person who doesn’t walk wants to be a track runner? Physically, it’s maybe not possible to be the able-bodied track runner, but can you still be a track runner? Sure!
What happens if a person with a certain functionality wants to be a dancer? Is it possible or not possible? That is a cultural understanding of bodies and what they can do.
What is also central is that ability is always in creation. A crip understanding of ability and dis/ability is that they are fluctuating. We all have abilities; physical, mental and social. Only certain types are considered disabilities, medically or culturally. There is the striking example of using glasses. I wear glasses. Medically it’s considered an impairment, but culturally, it’s understood that everyone will eventually wear glasses. If your functionality isn’t one that breaks ableism, then you are not disabled. As long as it’s something everybody does it’s a common ability.
Often, ability/disability are presented a natural dichotomy. That is the medical model. It’s not true, it’s a performance.
Something that is also a performance, and much more accepted, is gender. Judith Butler writes that gender is constructed within a culture and it’s a performance. It can be altered – you can change your gender expression in various ways. But you are also repeating the cultural idea of gender in your society. That also means that some gender identities are perceived differently depending on the body of the person who performs it. It depends on gender, age, sexuality, ability, race, class and other cultural factors.
I will go on to talk about femme. Historically, femme is part of lesbian/queer relationship dynamic where a feminine-presenting person has a relationship with a masculine-presenting person. We call that butch and femme. Dr. Ulrika Dahl writes about queer femininity:
“Femme is queering the idea of what femininity is. Playing with it and taking control over it. Femme is friction against the gender matrix, against the compulsory heterosexuality and against the male gaze and desire.”
Similarly to crip, “femme is resistance and identity.”
My friend Lesley writes:
“You don’t see [me as] a dis/abled femme because /…/ these words negate each other. I am feminine and pretty. Disability means weakness sexless passivity – ugly”
The chronically ill, queer writer Peggy Munson write: “Ah, to be a girl, an A-line skirt. A lampshade, lit from broken glass”
I write about femme: “femme /../ is about contrast in many ways./…/ it’s about enhancing my crippled body and my crooked legs and tiny hands with alluring cleavages and tight fitted skirts. But foremost, it’s the only way in which I can comfortably present my gender”
Leslie writes about the inherent contradiction of being a crip femme in an ableist world. Femme is something else than the dis/ability we have been taught. Femme is surface, perfection and beauty – super-straight eyeliners, super-starch lipstick, high heels and fishnet-stockings. These ideas of what femininity and queer femininity are demands of the abled body. You have to have skin that can take all that foundation without breaking out in rashes and feet that you can walk in high heels with, unless you’re in a wheelchair and can wear any shoes you like. I’m very envious. And you need sensory settings so that you don’t feel put-off wearing lace stockings.
In this sense, when we talk about a hegemonic understanding of queer femininity, it is quite ableist. However, Ulrika Dahl says that we have been understanding femininity as excessive but it’s not the most important thing. The important is a femme intent. It is my intent to present myself in a feminine way, as a person who is straight and heterosexual, but to behave like I’m not.
What we have been taught in presenting gender for people with disabilities is shown in this picture. It’s called a “uniform of ease” and has to do with sociology of health. These are a pair of Nike sweatpants. It’s like a prescribed uniform for people with disabilities. If we say that the symbol of disability in our society is a wheelchair, then what the person in the wheelchair most likely wears is this. It has to do with what’s easiest to dress someone sitting in. It also takes away signifiers of subjectivity, autonomy, personality. When we all have sweatpants, you can treat us like a group and not individuals.
I remember when I first tried to claim a gender identity. I was never raised in the uniform of ease. Far from it. But I was always perceived as the girl and never the woman. The cute and never the sassy. The pretty but never the sexy. I remember speaking to a friend about these feelings of alienation. The images I had of my identity were so far away from me. It was all about high heels, short skirts and makeup put on in a certain way. She said that I could wear a t-shirt with high heels on it. Then people would know I’m a femme. But I don’t like t-shirts, actually.
Years later, I found a group that became my refuge in all things crip and queer, my friend Leslie added me. We speak of pajama femmes. A revolutionary group of chronically sick ladies in America who often can’t leave their homes because that’s their lives. They don’t need to wear t-shirts with high heels to present their gender the way the like.
It gets to the point where you feel it’s possible to be intentful in a crip position about my ability and to transcribe that to the gender expression you like.
If femme is tricking also the heterosexual male gaze so that I present myself as straight, or as a normative, feminine person but I’m really not, then it’s also tricking the ableist gaze.
The male gaze is closely linked to this understanding of compulsory heterosexuality but also to the ability that is ableist. However the male gazed can be said to stop at an screeching halt when confronted with a crip subject.
Rose-Marie Garland Thompson writes about staring in an ableist world in her text Dares to Stare that: “Gazing says: ‘You are mine.’ Staring says, ‘What is wrong with you?’”
You see, femme is tricky because it can make me pass like just a straight girl… That’s the trickster part. Because the average straight girl is not a crip. My dis/ability overrides any other identity that I might have, especially in the context of gender and sexuality. So that when I am in a space with queer people, and were all super femme and breaking the gender matrix and talk about free love, there is still that “WHAT’S WRONG WITH YOU?”
I pass as an able-bodied person on the phone and when I’m sitting down. So if I’m sitting down and someone looks at me from across the room, they might perceive me as able-bodied. They only see it when I get up and move around.
There is something about desire and ability. In an American or Anglo-Sacco context, we talk about un-desirability. It is very linked to able-bodiedness. Who is a sexual person? Who can be a person whom it is ok to desire?
The stigma of disability creates situations where a desiring gaze directed at a person with a disability is perverse. It also makes me perverse for having a sexuality. It is not in the understanding of what a person with a disability would do.
It also has to do with the concept of age. If you’re never fully perceived as someone who will be fully autonomous, or you can’t do things adult people do in the time adult people do it, you end up in crip time.
That also means that you end up in crip-child time. If you are not perceived as an autonomous adult, you don’t have a gender identity and you certainly don’t have a sexuality.
So, even though I within myself have managed to break the gender matrix, the ableism matrix, it’s still tricky to navigate in this ableist cultural setting.
Leslie writes about a pick-up situation in her book:
“I remember another woman, compact and muscular. /…/ She confessed she had been drawn to me by the delicacy of my small hands cupping a wine glass. You looked so helpless she said, Innocent, I wanted to bend you over.”
So if we are sexualized, this is what happens. If gendered at, all gendered as frail, and helpless.
Trying to gender myself in an ableist construct, I will to some extent have to play the gender normative game. I’ve been thinking a lot about this in my work as a critical thinker. To move out of the norms of dis/ability is to move closer to other hegemonic presentations. So if I present myself this way – neither over the top nor down-dressed, but still feminine – it is outside the box of the understanding of what a person with a disability would wear. It’s fascinating.
But is it radical to present any kind of gender with disability? Or is it just vain? Am I vain, only interested in clothes? That could also be a thing. Does it need to be a radical choice?
In their essay, Manderson and Peak write about using a masculine presentation amongst men with acquired spine injuries. I see that performing a certain act of capableness helps to de-stigmatize the disability. That is their understanding of their interviewees. By performing your gender the right way, you can be not less disabled, but more comprehendible in the ableist world. More close to the norm, more close to being abled bodied. An ableist construct is that we often think of disability as a sole identity. There is very little interest in other norms coming from living as a person in society.
So there are absolutely hetero-normative sexist men and sexist people in disability movements. Is it radical to present a gender that is oppressive to others? It might overcome your disability, you might be perceived as the average guy. But what comes with being the average guy? I think we talk very little about that.
But as a person with a disability, you are really never on the normative side. You carry that disability with you all the time. Sometimes you pass, sometime you don’t. You’re understood as “the other”.
Even for me a as a cis-gendered female person, despite having a dis/ability and being a lesbian, it is encouraged for me in this patriarchal system to be small, frail and sweet. It doesn’t have to do with my dis/ability but with my gender. Of course it is enhanced because the understanding of me as a disabled person is pretty much the same. Hence, performing a traditional female femininity, I’m considered quite safe because you can think of me as this sweet and frail person. It goes together with being a woman in a patriarchal society and being a person with a disability in an ableist society.
However, since I am intentful – and my intent is to present myself in a way that is breaking the expectations of me, whether they’d be patriarchal or ableist – I think femme is about turning a normative presentation of gender towards the norm. I can look like any other girl but still be femme. That’s what’s interesting about what Ulrika Dahl says in her article, that femininity supposedly is about excess and a dangerous kind of femininity but it can also just be an identity, a comfortable of presenting your gender.
It’s interesting also in terms of my own personal experience. Presenting myself this way enhances my disability. I wear pencil skirts a lot that slim down towards the knees. And when I walk in them, my walk is super-disabled. If I met a physiotherapist, I’m sure they would say that I walk terribly. It’s more of a disabled presentation of my gender and therefore less normative. For me, to enhance the disability in a physical sense is also to reclaim it. How I walk is no physiotherapist’s business. It is less of a medical diagnosis and more of performance in everyday-life.
This is also what makes it radical I think. The presentation of my body that enhances what I’m not supposed to enhance. In an ableist society, you should cover up your disability and not show it. If you can pass – pass all the time.
Crip femme for me is flaunting all the things that were deemed to make me undesirable, that were deemed to make me undesirable and outcaste. But it is my choice of intent and presentation.
I thought I would show you my friend Lesley. Here is a photo of Lesley by Katinka Neuhof from a dance performance in New York this spring. It is kind of small on the PowerPoint. It is in black and white. She is quite tall and blonde. She has a flowing white dress which she has lifted up so that her leg and thigh is showing. It’s quite a sexual pose. If you look closely, you can see that Lesley has a few visible scars on her face. She also has short hands, or small hands, small fingers. Her hands look like star-fish.
It’s because these understandings of femininity as perfection and disability as imperfection, that these concepts don’t go together in the general society where it becomes an enigma.
We have been talking about the hegemonic understanding of crip femininity, and playing with a sort of dangerous femininity. To be too much, too vulgar, too slutty almost. Just walking the line, or trespassing the line and being fine with it. It’s true that these feminine representations range a long way, from baby doll femme to pyjama femme. I would also like to talk about femininity as a tool of navigating in an ableist structure. If femininity is anything for me, it’s a play with respectability. Femme is a tool to gain gender identity, to gain control over my presentation, to be a subject and not an object,
Feminist sociologist Beverley Skeggs talk about respectability as capital. It’s produced through manners, the way we dress, what we consume. She especially focused on femininity.
We can have this capital of respectability. It will give us credibility. When we meet other people we will be perceived as someone who has got power, who has a say in their life and some kind of standing.
Respectability is a tool that some people, depending on resources, need and want, can choose to employ to break the infantilization of the dis/abled position. If you’re always perceived as someone who is not autonomous, who doesn’t have credibility, who doesn’t have a say in what is good or bad for you, who doesn’t understand what’s good for you – this can be a tool to do this. I’ve been thinking about it more personally. If I walk in to a room in an ableist structure wearing sweatpants, I am perceived very differently from when I’m dressed like this. You can say that I’m playing the ableist game, using their tools. But what is the choice? If I want to be in certain places and do certain things, I must present a gender identity that doesn’t make people think that I don’t know anything, or that I’m pitiful. That’s not what I want. Using respectability in this sense is linked to resources – economical, but also in terms of self-determination and independence. If I live in an institutionalized living-area – do I have the choice to choose what I’m going to wear? If it’s a really good place then maybe yes, but most often not. If I don’t have enough personal assistance hours to take off these fancy dressed that I put on – can I choose to put them on? But what respectability does is to convey competence, self-awareness, power and capability. It can be used as a tool of compensation and move between the norms. If I’m very close to the norm of a abled-bodied person is, I am instantly far away from the hegemonic understanding of what a person with a disability is, or what a gender ascribed to such a body is. This is a quote I really like. It is from a friend I met the other night when giving a talk at ABF. She said: “They’re gonna look anyway, give them something to look at.”
I think we have touched on this previously. In a marginalized position, as a person with a disability is – world-wide but also in Sweden in ways that we don’t often think about since we consider Sweden quite an equal place – power is structurally and personally exhorted over you. Power can be exhorted over me by not giving the personal assistant hours that I need. But it can also be personally exhorted, when people look at me and say “look at you, who are you?!”. More often people just give me quiet looks though.
Coming close to the able-bodied norm in an ableist structure has the danger of negating actual needs for support and service. It sounds up the walls but is true. It’s about passing as abledbodied. Mog, Krieg and Bremer have written about trans-understandings of passing. They predominantly affirm this term as a medicalized position. Being a trans-person has connotations to a diagnosis in Sweden, and you need certain medical benefits to feel safe and to be the person you want to be. You have to go through a medical system with a lot of gender norms. Passing is about performing both a physical and a cultural understanding of a certain gender or having a certain disability. You have to pass certain physical requirements but also do it culturally.
Passing in any way is privilege because it means safety and often freedom of movement, especially in a physical sense, both for people with disabilities and trans-people. For trans-people it’s connected with violence. Our culture is very violent towards people outside the gender norms. Passing can let you move safely and freely in spaces where you wouldn’t otherwise.
I as a person pass on the phone, if I make a call to make a booking, no one hangs up on me because they don’t understand me or think that I am drunk. But if I turn up somewhere and haven’t mentioned that I use a walker, there might be stares.
The need to not pass is about political visibility of course. But it’s also about service and credibility. If I present my gender a certain way, people don’t think I am disabled. “I don’t see you as disabled” means I don’t wear sweatpants. That’s what it means practically. It may mean other things as well.
If a certain way of presenting gender hinders me to be perceived as a person who is marginalized by an ableist structure – what does that say about the understanding of dis/ability in our society?
It says that it’s a natural way of being. You’re either or. If you’re disabled and need help, don’t go in to your case worker’s office with this jacket on. It will negate what the notion of disability is but on the flip side. If you go in there in your sweatpants, they will think that they can trick you. You have to perform the exact right amount of respectability and ability in order to navigate in this notion of what a person with disabilities is.
Respectability also plays a part in the notion of what is a good, tolerated and accepted trans-woman. There is a lot of great reading by trans-theorist Julia Serano. One of her most famous works is Whipping girl that talks about understandings of femininity within feminist culture.
I thought I would end with this and we could have some questions afterwards.
Alison Kafer talks about crip pasts and futures. She says that we will carry our crip pasts with us and they will be visible to some people and invisible to others. But they must influence our present and future.
What is our crip-femme past? What possibilities have been presented and rejected? What I do when I lecture is to bare witness of violations of people with disabilities in Sweden. We have been and we are in quite spectacular ways controlled. This has to do with materiality and being a medical example, research products and such. It’s also in the discourse that we are portrayed as parasites, as liers. We need to talk about it, it’s still happening.
I would like to show this picture. It’s quite grainy. This is from 1907. This house is still standing but it’s very shiny now. It’s part of the Karolinska university hospital. It was a place called Eugeniahemmet. It was an institution for children with physical disabilities from the late 19th century to late 20th century.
I think that when we talk about intent and self-determination in gender expression, we need to talk about ways of self-determination and how it has been denied. Institutionalized living conditions took place on a large scale in Sweden from the 1890s to the 1980s, and are still present right now. There are still institutionalized living conditions. There is also and idea that the institutionalized living condition takes place in your home. If you have an apartment and you get certain hours of personal assistance – what does it mean to not have the time to choose what you’re wearing? It’s not because someone say you can’t, it’s because you don’t have the time. What does it mean to not be able to get out of your house? Likewise with the problems with austerity. We talk about the health care system in Sweden cracking down. What does it mean to not have the money to sustain yourself? What kind of choices can you make about self-intent, self-representation? I would say it’s about self-preservation. To stay intact. These notions of independence, freedom of choice, subjectivity and self-expressions have been unavailable for people with disabilities. That’s why it is puzzling that we all have gender identities despite being disabled, because we have never been taken into account. You shouldn’t forget that it’s being denied today. It’s happening all the time.
This is the last slide. It is a representation of what a crip past, present and future might be.
The first picture is black and white. It is one of my role models from growing up. It’s the visual artist Gölin Folkesson. She’s sitting in an armchair and she’s wearing a nice, high-necked black dress, a pearl necklace and a 1950s hair. This is from Eugeniahemmet. Behind her is a garland where it says VFA 1939. VFA stands for Vanföreanstalten, the crippled’s institution.
The middle picture is me. I’m seven, I’m in a wheelchair and I’ve got a frilly dress with flowers and a pearl necklace. I often talk about this picture as “bad attitude since 1996”. If you look at my eyes, they are really piercing. I use this as motivation to go out in an ableist world.
The last picture is of the femme future. It’s me. I have a huge necklace that looks like rose quartz but it’s plastic. I’ve got a dress that’s hinged down so that you can see my shoulders and a bit of my breasts.
That’s that. Now we can open up for comments or questions. Zafire will be here with a mic.
Thank you very much!
Thank you Christine! Any questions for Christine?
Thanks a lot. My name is Frida. I was just wondering if you in your research or your practice think about questions about being racified, I’m not sure how to put it.
I understand. I mentioned race a little. It’s an important concept. It also hinders gender presentation and possibilities for people with disabilities. It’s part of these interlocking systems of oppression. You have a certain system of oppression where you experience racism and it’s another system of possibility hinders which is very central. I include that a lot in my work as a critical developer but I didn’t have time to talk about it now. But it’s very important.
Thank you. Any other questions? Then I would like to thank Christine and say that the next thing that will happen here is a lecture by Robert McRuer called Crip Figures – disability, austerity and exploitation at 14:30. After that we have a break and then there will be a talk with Christine, Robert and I so if you have any questions, you can save them for then. The Kroppsfunktion-festival continues and if you want to enjoy parts of the festival, there is a video room behind the second door on your left with a lot of video documentation from the project. It’s running in a loop. Further down in the foyer, there is an anthology that was released yesterday and also our newly-launched homepage where you can see some films, read some texts and learn more about this project.
Another big applause to you, thank you!