Paul K. Longmore Institute on Disability - Sweden

Umeå 3: Interview with a Swedish Crip Queer Femme

Emily Beitiks — Tue, 04 Feb 2020 17:13:39 +0000

The following is an interview with Swedish crip queer femme researcher Christine Bylund who Catherine Kudlick met during her 1-month visiting professorship at Umeå University in early December 2019. Christine provides an insightful and fascinating international perspective.

Christine Bylund in a crip-femme-style-selfie

Catherine Kudlick: Tell me a little bit about you and your relationship to disability

Christine Bylund: I am currently a PhD student in ethnology at Umeå University. I identify as crip and queer femme, and was born with cerebral palsy in 1986. I grew up with my twin brother and my parents in a working class home in rural Sweden. My parents were active in the workers union and when they had two disabled children they took on the social model of disability as a model of understanding disability, power and resources, I was raised with a deeply rooted understanding that disability and marginalisation following it is not a personal flaw but a societal and political issue and that disability rights are human and civil rights.

Growing up, my family was very active in a disability rights-organisation where I met other disabled kids and adults. However, I did not think I would work with any things disability related. For many years I worked (and still do) with performance art, writing and club promoting. My decision to go into academia was based on coming in contact with a Scandinavian field of disability studies which I understood as more or less based on the medical model, there wasn't any research that I knew of which dealt with intersections of disability, ableism, gender and sexuality. I often say that I became an academic out of need, trying to fill a void of crip-theoretically driven research in a Swedish context.

My research deals with connections between the changing welfare state, desire and relationships through a crip-theoretical understanding of ableism, drawing from qualitative research material based on interviews and auto-ethnographic writing. Since 2009 a decrease in support for people with dis/abilities provided by the welfare state has taken place in Sweden. In this process, based on ableist notions, the concept of family and relationships are both overlooked and central. Cuts of support have a great impact on family lives, rendering people with dis/abilities dependent on their partners, parents or children.

However, little previous research has been produced about how the needs, wants and desires of relationships, families and kin-ships for people with dis/abilities have formed from and adapted to the changing conditions of the welfare state. Likewise, in the field of queer theory the role of dis/ability and ableism in the process of forming queer or non-normative relationships and ties of (inter)dependence has often been overlooked. My main question is: For whom has family-life and relationships been presented as a possibility in the different phases of the Swedish welfare state?

Catherine Kudlick: How did you develop an edgy disability consciousness?

Christine Bylund: I think of my crip sense of self as developing in relation to my femme and queer sense of self. Coming in to my 20s, from 2006 and onwards, I did not necessarily have a sense of a crip identity when growing up, despite an understanding disability as a political issue of power and possibilities from my upbringing. I would say that my first entrance into a queer community, mostly built up by people coming from queer disabilty contexts in the US and the UK lead me, online and in person, to people who have been integral to my understanding of gender, sexuality and disability, many of whom I have had the pleasure to work with in different ways. I often think of my coming into claiming crip as happening when I had the pleasure of meeting queer people with whom I could discuss the intersections of ableism/gender and sexuality, often with trans-identified friends and lovers. I also think of my femme eureka moment as being when I read texts on crip femme-inity which felt like coming home to a sense of femininity which I felt ableism had stripped from me, especially the pieces by Leslie Freeman and Peggy Munson in the Femme-thology volumes published by Homofactus press in 2009.

The intersections of queer and crip in my life has brought me to beautiful places with beautiful people both in a private and occupational sense, and I am so grateful for that.

Catherine Kudlick: Abroad, among progressive-thinking people, Sweden has the reputation of being good to people with disabilities. But during my recent stay in Umeå, and from our brief conversation, your research is finding some disturbing results. What do you think American readers should know?

Christine Bylund: I would say that the idea of Swedish exceptionalism is a huge part of the problem when it comes to raising awareness of the issues of oppression and discrimation that disabled people face in a Swedish context. I would like to stress for American readers that Swedish society in general and the Swedish welfare state in particular has a disturbing history of race biology and eugenics, affecting the indigenous Sámi population, ethnic minorities and disabled people in particular. Sweden has an almost 100 year long period of institutionalisation of disabled people, coming to an end only in the 1980’s. Along the same lines the right to vote was only granted people with intellectual disabilities in 1989.

Perhaps I would also like to stress the disability rights we have seen in Sweden, such as the personal assistance reform was not something graciously given by the Swedish but something constructed and lobbied for by the Swedish Independent living-movement.

However, I would say that Swedish welfare state can, when it is running as intended, safeguard both human and citizen rights in a just manner, in comparison to other countries, such as the USA. Ableism permeates any society and in a Swedish sense it shows itself in the discrepancy of how disabled children and disabled adults are treated.

Catherine Kudlick: How do you define “austerity” in the Swedish context? How does it compare with other places you know about, such as the UK and USA?

Christine Bylund: I would say one of the biggest differences lies in the sublimity of the Swedish austerity, not in its effects but in the way it has been carried out. We have seldom had direct cuts by the state and government, rather the change has been taking place in a legal and bureaucratic field where the concepts of who is and isn’t eligible for certain types of supports has altered one bureaucratic definition at a time, altering the legal spaces so that thousands of people have been kicked out of the welfare state support systems. This brings us to a truly kafkaesque situation where for example personal assistance with breathing devices was not considered a basic need (ie breathing is not understood as a basic need) granting support and service. In these situations, the government has said that nothing has been altered in the actual text of the law — which intentions still is to grant independence and equal living conditions — despite disabled people and disability rights organisations proving again and again the detrimental effects of such bureaucratic decisions . Despite massive critique from both the UN and the EU the Swedish state continues to dismantle the welfare state supports for disabled people whilst boating about its exceptionalism to other countries.

Catherine Kudlick: While in Umeå, I visited the exhibit at the Women’s Museum, which weaves disability activism into other forms of marginality and activism. I was pleased to find some playfulness such as the “Normaldemokraterna” and the mock sex education campaign. Have you been part of this? What do you think Americans could learn from it? What do you like about it, and do you think it has had an impact?

Christine Bylund: The campaigns you saw at the Women’s Museum have been produced by the Gothenburg Independent Living Cooperation (GIL). Sadly I have not taken part in any of them but enjoy their playfulness as well as their powerful ways of demasking how ableisms works in a Swedish contex. They have also done a few civil disobedience acts such as, intently breaking the one-wheel-chair-rule on the trams of the city by occupying them and turning one of Gothenburg's biggest parking lots into a disabled parking lot only by transforming a van so that it spray painted a wheelchair symbol on all the slots. The use of civil disobedience was a common tool for disability rights activist in the late 90s and early 00s as well.

However, I also know that some of the campaigns which have used the term CP, cerebral palsy (which in Swedish is a slur a par with the R-word in English) in a provocative manner has had some internal questions and the debates inside the disabled community. In the discussions following the campaign some activists with cerebral palsy have expressed feelings of having the stigma of an ableist understanding of the word being reinscribed through the use of the word in this setting. In these cases GIL has often justified their use of the term by expressing their intention of using it in a subversive sense. I am especially interested in the discussion following these campaigns as it shows both the heterogenity and the potential conflicts of interest in the Swedish disability community.

Follow Christine Bylund on Facebook or on Instagram as: @kittinvittamin

Tags:

Sweden

Queer

Femme

Crip Identity

disability studies

Umea University

Umeå 2: Automatic Assumptions

Emily Beitiks — Wed, 29 Jan 2020 00:13:22 +0000

By: Catherine Kudlick

Right up there with “handicapped” parking spots, ramps into buildings, and braille in elevators, automatic door openers are the most prominent public symbols of the Americans with Disabilities Act (ADA). In case someone happened to forget or never thought about it, every little bar to open a door even has a little wheelchair symbol.

So, when I arrived at Umeå University for my month-long visiting professorship, one of the first things I noticed was that the openers didn’t have little wheelchairs on them. Ok, it’s Sweden, so there’s no ADA. But every door had an automatic opener, and they were just part of daily life. Whether you used a wheelchair or not, you needed them because it was really cold and the doors at the modern university were all ridiculously heavy and when you’re half-frozen, stomping in with boots and thick gloves, you might appreciate being able to tap on an automatic opener.

In other words, the automatic openers weren’t labeled as “special” - they simply opened the door.

Swedish Door Opener

American Door Opener

I was fascinated by the implications. With all the talk of “universal design,” why do we need a wheelchair symbol on automatic door openers? I wondered how many people in the USA either consciously or unconsciously don’t use them because they imply stigma and needing help. Without the label, they’d be door openers for everyone, just like OXO Good Grips kitchen tools and so many other “assistive devices” that started out special and are now mainstream.

Other implications: would having a wheelchair symbol on something mechanical make it more or less likely that it would be repaired if it broke down? I imagine fears of lawsuits and/or a sense of urgency when something with a wheelchair on it needs to be fixed. But then again, when something is understood to be for “just a few of those people,” it might not seem as urgent as it does when everybody depends on something. In other words, when an automatic door opener without a wheelchair symbol on it stopped working, the urgency would be framed as “the door can’t be opened” as opposed to “the automatic door needs to be repaired.”

But then I had this other thought: if all the wheelchair symbols were removed from automatic door openers, maybe people would forget to thank disabled people for making everyone’s world a little better.

Tags:

universal design

access

Sweden

Disability Accommodations

automatic doors

Umeå 1: Hospitals and Hospitality

Emily Beitiks — Fri, 10 Jan 2020 00:43:53 +0000

By: Catherine Kudlick

On my final day of a month-long visiting professorship at Umeå University, I returned to the hospital for the fourth time.

If you’re like me, reading a sentence like this makes your body clinch up with dread and worry. Oh no! Did she get sick or have a condition she’s been hiding? Or did she slip on the ice? Should I keep reading - I want to know but I don’t want to know….

Here’s the thing: I found myself in northern Sweden’s largest and best hospital because it occupies this unusual central place in the life of the university and the world around it. The first time, it was to buy ground coffee and a small press-pot in a popular place that everyone told me sells some of the best coffee in town.

The second time it was because a colleague had invited me and some others to dinner, and we took a shortcut through the warm maze of buildings as a brief respite from the wind and ice that swirled outside; we weren’t alone as we wound through modern corridors surrounded by people, some in groups, others walking bicycles (a couple riding), a wheelchair or two, chatting with friends, just a typical Saturday night in the hospital.

The third time it was to buy a bus pass, followed by a delicious lunch buffet at the hospital hotel (one of the nicest in town I was told). I waited in real lines with real people doing real things, not stuck in that sterile hospital weirdness.

But it was the fourth time on my final day that totally blew my mind. I’d offered to accompany one of the post-docs who was anxious about a routine medical procedure that I’m familiar with. After she finished (greatly relieved to have it over with), on the way out we discovered a wonderful library with wood and plants and books and comfy chairs to read in. Since it was holiday season (and daylight lasted less than five hours), there was a class for candle-making. There were at least two actual librarians, and on their desk was a basket full of free small pins; on a rainbow background and in a dozen languages to choose from, each one said “It’s your right to be you.” If you were associated with someone who was staying in the hospital, you could check out one of the many novels or children’s books, and there was a room for watching DVDs. If art was your thing, there was a gallery attached to the library where local artists displayed work and sometimes give gallery talks. Just down the hall several people were lingering in a fascinating medical history museum.

And if you pushed through the mixed crowd of people in winter coats and hats interspersed with health professionals in scrubs and janitors tidying up, you came to store that sold mobility equipment like walkers and grabbers and specialized eating utensils alongside wheelie carts to haul groceries, yoga mats, and other everyday stuff to remind you that — like a hospital itself — healthy living isn’t just about what’s perfect and pure.

Sweden isn’t paradise. Indeed one of my take-aways during my month-long visit was the heartbreak of watching the disabled people I met discover that their country is afflicted with the disease of austerity which, while still less acute that what we have in the US and other western European countries, poses a growing danger to Sweden’s long-celebrated safety net.

Still, Umeå University Hospital set me dreaming: if hospitals and more copious definitions of health were more integrated into the large and small of everyday life, maybe the people needing care — and ideas of care itself — would make it harder to turn away from people we falsely believe have nothing to do with us.

Tags: