Bringing disabled women together, mobilising
and sharing through lived experiences

This is a call for Papers for the Lancaster Disability Studies Conference 2016

The foundational text, The Sexual Politics of Disability, was ‘the first book to look at the sexual politics of disability from a disability rights perspective’ (Shakespeare, Davies and Gillespie-Sells, 1996: 1). Ground-breaking in its contents and its approach, the sexual stories contained within the covers of the book – told by disabled people themselves – challenged the prevailing myth of asexuality and other tropes which render disabled people as perverse, hypersexual, or as lacking sexual agency.

Despite this scholarly activism, the sexual, intimate, gendered, and personal spaces of disabled people’s lives remain relatively under-researched and under-theorised in comparison to other spaces of their lives. Rarely are disabled people themselves authors or co-producers of this work. Where austerity policies dominate, we are unsure of how this impacts the possibilities for intimacy and relationships. Conversely, we lack evidence about the impact of the UN Convention on the Rights of Persons with Disabilities. Significant gaps remain in our knowledge of disabled people’s experiences of sex, love and relationships, then, often in marked areas.

This inaugural sexuality stream marks the 20th anniversary of The Sexual Politics of Disability (1996). In this stream, we aim to celebrate and encourage the broad bodies of work that have emerged within the ever-expanding field of disability studies, gender studies and sexuality studies. For this stream, we will prioritise papers containing original social research, as a response to the relative dearth of empirical work within the field.

We are thrilled to have Don Kulick, Distinguished University Professor of Anthropology at Uppsala University, Sweden, as keynote speaker. His books include Travesti: sex, gender and culture among Brazilian transgendered prostitutes (1998), Fat: the anthropology of an obsession (2005, edited with Anne Meneley), Language and Sexuality (2003, with Deborah Cameron) and most recently Loneliness and its Opposite: sex, disability and the ethics of engagement (2015, with Jens Rydström).

We welcome papers on the following themes:

1. Identity and imagery: masculinities, femininities, Queer and Trans* identities
2. Intersections of gender, race, sexuality, class, nationality, age, and religion/faith/spirituality.
3. Sex education and sexual health
4. HIV/AIDS
5. Pleasure, sensuality and desire
6. Sexual and bodily esteem, confidence, self-worth and self-love
7. Impairment, embodiment and corporeality
8. Psycho-emotional disablism
9. Barriers to sexual expression
10. Youth
11. Parenting
12. Learning disability and sex/uality
13. Mental health, distress and intimacy
14. Intersections of personal assistance, residential and social care, and intimacy
15. Sex work and sex industries
16. Sexual, emotional and intimate-partner violence
17. BDSM, kink, and fetish
18. Online and cyber sexuality
19. Sexual drugs, enhancements and technologies
20. Human rights law and disabled sexualities
21. Researching sex/uality: data collection, methodology and analysis
22. Theoretical contributions: Critical Disability Studies, Feminist disability studies; Queer Theory; Crip Theory; Posthuman and DisHuman studies.

Contributions that reflect on any of these themes are invited from academic and non-academic researchers, scholars, activists, and artists. These themes are indicative only, and we will consider proposals that fall outside them so long as these relate to the overall conference stream. We welcome offers of traditional academic papers (20 minutes max) and also welcome proposals and presentations in alternative and/or creative formats (e.g. film, animation, poetry). Submissions should be made through easychair and please specify you wish to be considered for this stream.

If you have any other questions, don’t hesitate to get in touch with Kirsty: k.liddiard@sheffield.ac.uk.

Please see here for the Mad Studies stream and here for the main conference call for papers.

Kirsty Liddiard is on Sisters of Frida’s Steering Group. She is currently a Postdoctoral Research Associate within the Centre for the Study of Childhood and Youth,  at the University of Sheffield, working on a transdisciplinary research project entitled Transforming Disability, Culture and Childhood: Local, Global and Transdisciplinary Responses. Prior to this post, she was the inaugural Ethel Louise Armstrong Postdoctoral Fellow at the School of Disability Studies, Ryerson University, Toronto, Canada.

Sisters of Frida CIC is an experimental collective of disabled women. We want a new way of sharing experiences, mutual support and relationships with different networks.

Sisters of Frida started at a meeting when we floated the idea of having a disabled women’s group. It took some time to come together – the co founders were Eleanor Lisney, Michelle Daley, Eleanor Firman, Maria Zedda, Svetlana Kotova, Frieda Van De Poll and Martine Miel. We became a CIC in 2014.

We are seeking to build a/or different networks of disabled women.  The barriers and multiple discrimination have not changed, we struggle to have our voices heard as disabled women in our own rights.

We would like a sisterhood, a circle of disabled women to discuss, share experiences and explore intersectional possibilities.

Facebook group (for UK residents) : https://www.facebook.com/groups/sisofrida/

Facebook page : https://www.facebook.com/sistersoffrida/

Instagram: @sisters_of_frida

Twitter: @sisofrida

We are really excited that many Sisters of Frida will be speaking at the WoW Festival 2016. At the moment we can confirm

Saturday 12th 11.30 -12.30

Coming Out as Disabled: Body Image, Labels and Denial of Disability

One in five of us is disabled – so why do so many women try to hide their disabilities?

Zara Todd, Debs Williams, Rebecca Bunce and Dyi Hudjg

Saturday afternoon with Sarah Rennie in

Toilets are a Feminist Issue

Ever been frustrated by the queue for the ladies’? Come and hear about how you can judge the gender equality of a nation by the state of its toilets. Led by the doyenne of toilet politics, Professor Clara Greed.

Sunday 13th 1.15-2.15, Pauline Latchem

‘Chore wars & domestic lives‘ –

this session is about the male/female split of domestic labour and whether or not this is one of the last frontiers of gender inequality.

Tickets can be bought online

Khairani Barokka

We met the lovely poet and disability and arts (self-)advocate Khairani Barokka who came to our AGM. We are delighted that she will be at the Bare Lit Festival 2016  Panel:

Second Generation Poets in Exile.

We wish her all the best!! and hope a few of us will manage to get to see her there at the Free Word Centre 60 Farringdon Road London, EC1R 3GB which is accessible!

Okka’s bio

Khairani Barokka (b. 1985) is a writer, poet, and interdisciplinary artist. She is also a practitioner of think/do advocacy in the arts, particularly on the ways in which innovation in storytelling can increase inclusion and access for and by disability cultures and feminisms (both of which she is happy to be a part of). Born in Jakarta, Okka works, teaches, and is published internationally, in print and online (see WRITING for recently published and forthcoming work). Her lectures, performances, workshops, and/or projects have been presented extensively, in India, the US, Australia, Malaysia, the UK, Austria, Germany, Singapore, and her native Indonesia. She has a masters from ITP at NYU’s Tisch School of the Arts, as a Tisch Departmental Fellow, working on participatory, interactive art, literature, and social issues storytelling. Her BA (High Honors, College Scholar) was from Middlebury College in Sociology/Anthropology.

Okka is the writer, performer, and producer of a hearing-impaired accessible solo show, “Eve and Mary Are Having Coffee” (with a grant from HIVOS as main sponsor), which premiered at Edinburgh Festival Fringe 2014 as Indonesia’s only representative. Previously, she pioneered the production of the first live-streamed spoken word shows in Indonesia, involving cross-national collaborations, with a focus on social justice/disability justice. As an independent scholar, she is a member of the International Federation for Theatre Research (IFTR), and has presented at international conferences, festivals, and as a two-time TEDx speaker (Jakarta and Youth@Chennai). Okka was profiled in UNFPA’s book “Investing in Young People in Indonesia: Inspirational Young Leaders Driving Social Change” (2014) for raising awareness of disability issues and perspectives through art and writing. She has also been featured widely in national and international media, among them multiple ABC Australia appearances (radio and television), RRR (Aus), The Hindu (India), The Times of India, The New Current (UK), and all major Indonesian newspapers and media including National Geographic, Esquire, and BBC Indonesia (see PRESS for complete list).

Okka was most recently Artist-In-Residence at Rimbun Dahan (Malaysia, 2014-15) for 6 months, where she worked on writing projects as well as using text in mixed media works. She has also held residencies at Vermont Studio Center (US, 2011; with a grant for poetry, as first Indonesian writer-in-residence), Tutti Arts (AUS, 2013), the EQUILIBRIUM Project at Sandarbh (India, 2014), Jatiwangi Art Factory’s Village Video Festival (Indonesia, 2012) and was Emerging Writers Festival’s (AUS) Inaugural International Writer-In-Residence for 2013.

Her first book as sole author, a poetry-Braille-art production entitled “Indigenous Species” (also to be made available in non-Braille versions), will be out in late 2016 with Tilted Axis Press (UK). “HEAT”, an anthology of Southeast Asian urban writing co-edited with Ng Yi-Sheng for Buku Fixi Publishing (Malaysia), will be launched at the London Book Fair in 2016. In September 2015, Okka began a PhD by practice in Goldsmiths’ Visual Cultures Department, on an LPDP Doctoral Scholarship. She continues her work at the intersections of writing, art, disability cultures and participatory narratives with a long-awaited project–it’s been given the enticing codename “Project A”, as lacklustre codenames are significantly underrated as a method of approaching secret missions.

Many thanks to the Crippled Bitch, Emily Wolinsky, for permission to reblog this.

I beg you to consider this analogy:

Imagine two children.

The first child is a child with a severe nut allergy. Let’s call her Lilianna. Lilianna, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she encounters a nut, nut dust, or nut oils, this child goes into convulsions and is minutes away from death. This child needs life-saving injections delivered immediately to her system so she won’t convulse and/or go into anaphylactic shock. Lilianna needs accommodations at school, so teachers and staff are aware of her allergy. Special arrangements may need to be made during the day and after school so this child can safely participate and attend in activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Lilianna will have to learn to read labels, prepare and cook food differently, and advocate for herself for the rest of her life.

In the case of Lilianna, would you say that she is:
A. Terminally ill
B. Disabled

The second child I want you to imagine is a child with a severe neuromuscular condition, like Spinal Muscular Atrophy. Let’s call her Sally. Sally, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she gets a chest cold, she has a hard time coughing due to weakened muscles. This child needs life-saving pulmonary therapies delivered immediately to her respiratory system so she won’t drown in her phlegm. Sally needs accommodations at school, so teachers and staff are aware of her condition. Special arrangements may need to be made during the day and after school so this child can safely participate and attend activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Sally also uses a wheelchair and other equipment that allows her to move and be comfortable. She will have to advocate for herself for the rest of her life.

In the case of Sally, would you say that she is:
A. Terminally ill
B. Disabled

Now consider your two answers. If your answer is B (disabled) for the first child, Lilianna, and A (terminal) for the second child, Sally, you are in the majority and I’m very sorry to say, but you are ableist. I know, it’s hard to process that, but if it’s any consolation, it’s probably not your fault. After years and years of skewed media, pity pornography, and a telethon about kids with neuromuscular disabilities (NMD) deemed terminal in order to raise money to “save” them with a cure, most people have arrived at the wrong answer to the questions above. Because of this stigma based from a foundation of medical model induced abelism, poor Sally is now facing an infinitely harder life as an adult than Lilianna is.

Fast-forward to little Sally’s first sexual relationship.

Yeah, I said sexual. Jerry’s kids grow up and have hot sex.

Sally grows up and starts attending college. She meets a guy and they hit it off so well that soon they are like most college kids these days and having horny sex. All of Sally’s friends tell her to go to Planned Parenthood to get on birth control. Oh wait, scratch that. Planned Parenthood is a dirty word for some reason, but that’s another essay for another time. All of Sally’s friends tell her to go to see her gynecologist to get on birth control. Sally doesn’t want to get pregnant and she’s embarrassed to talk to her parents about this guy she’s fooling around with, so she makes an appointment and takes one of her girlfriends with her to see the a gynecologist for the first time.

Guess what happens?

The doctor enters the room and completely looks past Sally to her friend. When her friend tells the doctor that she’s at the office to accompany Sally, the doctor looks at Sally dumbfounded. Sally explains that she has Spinal Muscular Atrophy, which is, “kind of like Muscular Dystrophy”. She claims that even though she uses a wheelchair, is 65 pounds, and can barely move, she is sexually active and trying not to get pregnant. The doctor’s mouth drops and he thinks back to all those years of watching the Muscular Dystrophy Association’s Labor Day Telethon. Wait, he thinks. Aren’t these kids supposed to be dead already? Aren’t they terminal? He figures Sally is an unusual case.

The doctor regains his composure and hands her an office dressing gown and a cup, tells her to go to the bathroom and provide him with a urine sample, return to the room, undress and get on the table. He says he’ll be back in the room in a few minutes. Sally, already incredibly nervous, feels panic take over. She looks at the doctor and explains that she needs assistance getting on the toilet and the exam table. The doctor has a terrible back, and young Sally looks fragile with a back curved into an S shape and tiny bony frame. He’d hate to try and lift her onto the table and hurt either of them. The doctor looks at her friend. The friend shrugs. Sally states that her friend cannot lift her. By this point, the doctor realizes that he’s just going to have to go by Sally’s word. He asks her when her last period was. He asks her if she has used condoms. He decides to write Sally a prescription for birth control and tells her to start taking it the Sunday after her next period ends. He tells her that they can do her pelvic exam another time and suggests that next time she bring someone who can lift her on the table.

Three years later Sally finally gathers up the nerve to return to her gynecologist. Yes, the doctor prescribed her birth control for three years without ever doing a pap smear; ignoring protocols, but figuring that sooner or later this fragile girl would probably be too sick to have any fun. But when his nurse practitioner came into his office one afternoon and told him that Sally had called to make an appointment for irregular bleeding, after checking his file and seeing zero history other than a birth control prescription, he remembered her. This time he knew she would need to be examined. He got on the computer, went to the search box and typed, “muscular dystrophy pelvic exam” – nothing. But he did see “spinal muscular atrophy cure”, “SMA angel”, and “make a muscle”. He typed in “muscular dystrophy pregnancy” – nothing. But he did see “donate to save a life” “girl with terminal muscle illness chooses heaven”, and “live unlimited.” He figured he’d wing it.

Twenty-three year-old Sally arrived at her gynecologist’s office a few days later with her boyfriend and a personal care attendant. Her doctor’s office was still on the second floor and the elevator was still rickety and small. It smelled like the 1970s. When she got off the elevator and rolled to the door at the doctor’s suite, she tried to open the door, but it was very heavy and no automatic openers were visible. Thankfully, her attendant held the door open. She drove into the office and navigated through the tight waiting area with chairs pushed so closely together that strangers’ shoulders were overlapping. Sally approached the receptionist window, which was three feet higher than she was. The receptionist started asking her attendant questions and Sally spoke louder. The receptionist handed her boyfriend a clipboard and told him to fill out Sally’s information for her. Just a few nights before Sally had celebrated her acceptance into a top law school, but the receptionist proceeded to call her “sweetie”, and spoke slowly when addressing her. Sally knew right away that no one here had ever had disability awareness training.

45-minutes later…

Sally’s boyfriend considered himself a patient guy. He loved Sally, but it was a little irritating that he had to take the afternoon off of work in order to lift her onto a table. He didn’t tell her that though because he knew she was more than worried about the bleeding. When Sally was finally called back to the exam room, he realized that the five of them couldn’t all fit in the room. First, he and Sally went in. They finally got the wheelchair angled right so he could cradle lift her out of her power wheelchair and put her on the table. Her attendant had to climb over the chair in order to move the wheelchair out of the room. Her boyfriend had to hold her still on the tall narrow table so she wouldn’t fall off. Sally was sweating and shaking from nervousness, like a bird captured in the palm of a human hand. Her attendant quickly came over and both of them managed to get her undressed. She couldn’t lie flat on her back and needed to rest on her right side facing the wall until the doctor was ready to see her. By the time she was in a resting position, Sally asked her boyfriend to leave the room. She was in tears. She said she wished she didn’t need him to lift her because she really wanted to, “handle her woman business alone.” Sally’s attendant shooed him off and he went out to wait for their call. While he waited, he secretly checked his Tinder app.

The minute the doctor began Sally’s exam he knew something was very wrong. The bleeding was bad. Her bloodwork from the lab had markers. She was in agony. Both of them were visibly uncomfortable. The doctor knew the probability of running more tests, especially after identifying a small lump in her left breast. He didn’t want to scare Sally, so after she was dressed and back in her chair, he quickly listed off a number of labs and diagnostics she would need to get immediately. He referred her to his trusty diagnostic lab that he had used for the last twenty years and said they would take good care of her. When Sally left, she had a folder full of referrals. This meant more doctors’ appointments. Her boyfriend said he couldn’t take off work again. Her attendant said she would go, but didn’t think she could lift her on the table safely. They’d work it out somehow.

Two weeks later, still bleeding, Sally exited another elevator that smelled like the 1970s. She went down another hallway decorated in dismal brown colors, which led to another heavy wooden door. Her attendant opened it. Sally recognized everything even though she had never been to this lab before. This familiarity was enough to make Sally downplay her symptoms that she listed on the form the receptionist handed to her attendant from “often” to “rare”. When she finally got into the mammogram imaging room and saw the machine that required someone to stand and lean into, she flashed back to three years before at the gynecologist’s office. The nurse handed Sally her exam robe and told her to undress. She asked her if she needed help standing. Sally looked at her attendant and looked back at the nurse. She wanted to scream with frustration, but this familiarity became the magical cure that she always needed. She said that she wouldn’t be able to do the exam because the equipment wasn’t accessible. The lab technician stared at her dumbfounded. “Well, why don’t we get you to another lab, Sweetie?” The tech told her all about this lab sixty miles away. Accessible public transportation could drop her off forty-seven miles away.

Sally smiled and took the cure instead.

Sally went home that night, shredded her documentation on the different types of cervical and breast cancers her doctor gave her, cancelled her future appointments, told her attendant that she’d be fine, told her boyfriend that the appointment went well, and bled daily until she died of cervical cancer six months later.

At her funeral, located at an inaccessible church, all the people who stood to speak about little Sally said that she was a SMA Angel who fought a brave fight against a terminal illness and lost like so many other angels. As mourners walked out of the funeral home, they wrote a donation check for a cure for Muscular Dystrophy.  One mourner, a friend Sally made in high school, made sure to avoid the bowl of nuts sitting on the table near the donation envelopes as she headed toward the door.

Group photo at the end of the AGM

We had a great turn out for the annual meeting at Blackfriars Settlement last Saturday. The venue was great, spacious for our needs and had good access. Not everybody could stay the whole time.

We have a nice lunch and the meeting proceeded well with Eleanor giving an introduction and welcoming new people, reporting on activities in the past year. Lani and Dyi spoke about the Sexuality and disability workshop before we had a short break. Sarah then gave a presentation on the Sisters of Frida’s structure and lead the discussion on how to proceed to work in the future. There was great enthusiasm on the idea of a ‘family’  – on the discussion for a name for supporters and donations. It continued on to what Sisters of Frida did and does as a collective and ended with a question and answers session before time ran out.

There was a short Steering Group meeting with old and new members before it was time to clear up and out of the venue.

The Steering Group 2016

Annabel Crowley

Armineh Soorenian

Dyi Huijg

Eleanor Lisney

Kirsty Liddiard

Lucia Bellini

Michelle Daley

Rebecca Bunce

Sarah Rennie

Sophie Partridge

Zara Todd

many thanks to Obi for livestreaming for us – some sisters could not make it to the meeting.

here are the links if you want to watch

http://bambuser.com/v/6084341

http://bambuser.com/v/6084446

Meeting Minutes Meeting minutes SoF_AGM2016