Author Archives: elle

Khairani Barokka:poet/disability & arts advocate at Bare Lit Festival 2016!

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Okka

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 performing at the award-winning Betsey Trotwood pub to celebrate the debut of Bare Lit Festival 2016!

She will also be on the 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 performance!

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.

Destroy the Joint, sure, but feminism must include disability politics

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This is reposted from The Conversation which uses a Creative Commons Attribution NoDerivatives licence and with kind permission from Kate Ellis. We think this fits in very well with what was voiced at the panel on disabled women at Feminism in London.

The sometimes uneasy relationship between feminist groups and disability activists was highlighted last weekend, when online Australian feminist group Destroy the Joint (DTJ) blocked and banned a number of high-profile Australian disability activists, claiming the women were in breach of their rules.

DTJ had called for submissions to the hashtag #beingawoman on its Facebook page, sparked by a Buzzfeed article featuring both lighthearted and serious tweets reflecting on modern womanhood.

Several disability activists began posting their experiences, only to be deleted for being “repetitive, circular and off topic”.

The comments that were deleted included the following:

My doctor told me to get a hysterectomy or change my tampon in my office because there was no accessible toilet nearby at my workplace #beingawoman

when people deny my sexuality because they think disabled people having sex is disgusting #beingawoman

DTJ banned the commenters from its Facebook page, for “spamming this post and page with a large number of obvious half truths and distortions”.

After a number of members and disability activists encouraged the group to reconsider its stance on intersectional feminism, DTJ issued an apology yesterday afternoon:

Dear Destroyers,

Let us begin with a belated and unreserved apology about the way we have handled the comment moderation in this instance [the #beingawoman incident]. We acknowledge we can always be more inclusive.

We are constantly discussing ways we can achieve this and no woman living with disability should be excluded from this page. Anyone who has been banned as a result of this will be unbanned. Please email jointdestroyer@gmail.com so we can be thorough about this.

It has always been our mission to include everyone and Counting Dead Women includes all women who have been killed as a result of gendered violence.

While it was a disappointing weekend for those of us who identify as both disabled and feminist, the gaffe has prompted a reflection on the ways disability politics are essential to feminist politics.

Intersectional feminism

Disability is a feminist issue and the silencing of disabled voices and experiences does not further the feminist cause. While the women posting on DTJ may have experienced gendered oppression, such as domestic violence, they are simultaneously affected by ableism.

American law professor Kimberlé Crenshaw described the ways minority groups experience multiple and overlapping oppression as intersectionality in 1989.

Women with Disabilities Australia recognises that, for women with disabilities, the effects of gendered oppression are compounded. As Sue Salthouse and Carolyn Frohmader explained in a 2004 presentation for the group:

Low levels of education relegate women with disabilities to lower echelons of society, limit their access to information and their ability to interpret it, limit their life choices and limit their ability to achieve financial and living independence.

Women with disabilities are also more likely to suffer domestic violence and sexual assault.

Feminist blogger and activist Clementine Ford told me via Facebook that this is the reason why disability politics must be included in feminism:

It is vital for feminism to focus on the impact of sexual violence, but how can we do that properly if we don’t acknowledge that 90% of women with an intellectual disability have experienced sexual assault?

Reproductive rights are core to feminism, yet they cannot be discussed without also hearing from the women whose impairments have led to doctors and carers deciding – without their permission – they must be sterilised in order to prevent the physical aftermath of sexual violence becoming a “problem”.

Just today, I read an article about two parents with cerebral palsy who have been “allowed” to keep their child. The dehumanisation of women with disabilities is appalling, but even worse is the way these issues are marginalised even within feminism.

Disability politics marginalised within feminism

In Integrating Disability, Transforming Feminist Theory (2002), Rosemarie Garland Thomson explains how both women and people with disabilities are considered “deviant and inferior” within cultural discourse and subsequently excluded from participation in public and economic life.

Other disability theorists suggest the reason women with disabilities have been excluded from mainstream feminist circles is because they are a reminder of vulnerability and lack of control, identities feminists have traditionally sought to reject.

Whereas disability was once thought of as an individual’s medical problem to overcome, following the work of disability activists such as the late Stella Young we are increasingly coming to recognise disability as a problem related to inaccessibility and negative attitudes. Disability, like gender, is a social construct.

We are all women

Back in 1988, disability theorist Susan Wendell called for a “feminist theory of disability” as a way to move forward in both disability politics and feminist theory. Wendell argued the oppression of disabled people is closely linked to the cultural oppression of the body. She believed a feminist theory of disability would “[liberate] both disabled and able-bodied people”.

Disability activist Samantha Connor, who was the first to be banned on DTJ for contravening its commenting guidelines, continues to see the importance of mainstream feminism in breaking down power imbalances for people with disabilities. As Connor explained to me:

We are all women, and the issues we face are issues faced by mainstream feminism, not by individuals or minority collectives.

The incident illustrates an important truth: being aware of intersectional oppression in 2015 should not be an optional “extra”, but fundamental to any social justice movement.

Correction: a previous version of this article contained a paragraph stating that criticism had also been also been levelled at DTJ over allegedly failing to include women with disabilities in their regular count of women who have died as a result of domestic violence or abuse. While that criticism exists, it is not substantiated.

Kate Ellis

Kate Ellis

Dr Katie Ellis is a Senior Research Fellow in the Internet Studies Department at Curtin University. She holds an Australian Research Council (ARC) Discovery Early Career Researcher Award studying disability and digital television. She has worked with people with disabilities in the community, government, and in academia and has published widely in the area of disability, television, and digital and networked media, extending across both issues of representation and active possibilities for social inclusion. Her most recent book with Gerard Goggin is ‘Disability and the Media’

Zara Todd : Have you always been disabled?

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If I had a pound for every time someone asked me this question or a less polite version such as what’s wrong with you? Have you always been like this? Were you born in a wheelchair? I would be a millionaire.

Now I know people are curious about disability (even if I don’t really get why) but do we really need a superhero like origin story can’t we just exist? While I generally humour the disability questions, providing people are politely I’m not going to lie it is irritating.

However recently Ive begun to realise all of these ‘origin’ questions are intensely personal and potentially traumatic. While seemingly most of the questions have yes or no answers in reality the conversation doesn’t stop there. For the majority of disabled people it’s either unclear when we acquired our impairments or the result of a traumatic experience. Meaning the answer to ‘have you always been disabled?’ becomes no or I don’t know. These answers invariably lead to more questions or an expectation of an explanation. I was trying to think of similarly personal question and the best I could come up with was why did you get divorced? Whilst some would ask the majority would let the affected party direct the conversation.

Despite having my impairments as long as I can remember and therefore the questions about my impairment for almost as long, until recently I didn’t really feel like I had any option but to answer. In part feeling compelled to answer questions about my impairment comes from growing up in systems which depend on that information to judge my eligibility for support combined with me being the first ‘severely’ disabled person in many of the environments I’ve accessed. However I now question how that information being disclosed to all and sundry has aided me. Yes as someone with support some people need to know what support I need but is do impairment labels or my history communicate my needs… Not fully.

I suspect it has taken longer for me to take ownership of my right not to disclose my ‘origin’ story because I’m a woman as often the refusal to disclose information is often seen as being aggressive regardless of how polite the denial.

I’m not against talking about impairment or disability in fact if we talked about them more maybe the novelty factor would wear off, however I believe that disabled people should have control over their own story and who they disclose it to.

Surely there are much more interesting conversations to be had.

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Zara ToddZara Todd has been involved in young peoples and disability rights since she was 12 and has worked both in the UK and internationally trying to increase the voice of young disabled people.
Zara is currently chair of Inclusion London, a Deaf and disabled people’s organisation supporting Deaf and Disabled people’s organisation in London. She is an active member of the European Network on Independent Living running several trainings for young disabled people from across Europe.
She can be contacted at @toddles23

Disability is not our only identity: An interview with Becky Olaniyi

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Becky Olaniyi

Becky Olaniyi

In anticipation of this year’s Feminism In London conference (October 24-25), Alicen Grey talks with Becky Olaniyi about disability, feminism, and the challenges and lessons of being an activist at the intersection of identities.

See the rest of the interview at the Feminist Curent.

Becky is the youngest member of our steering group but she’s a brilliant speaker. Its not too late to get tickets for the workshop. And if you have difficulties paying, just let them know.

Disabled Women’s Panel at FIL: sunday 25th 12.30-2pm Hilton Metropole Hotel, London

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sun 25 oct  12.30 – 2pm   Feminism in London:  Sisters of Frida’s Disabled Women’s Panel  Multiple Identities: ordinary lives:  The challenges of being disabled and feminist  Disabled women’s rights are human rights! Disability can be physical, mental, neurological, hidden or visible. This panel will look at activism through the prism of disability and feminism and seek to explore further the intersection and challenges of being between the two and the capacity of the two movements to work for change.

Too often are disabled women absent from the mainstream feminist discourse. We are often invisible. Here we will be speaking on a range of topics from the views of young disabled women from Becky, on politics and advisory roles from Kirsten, on violence against women and girls (Asha will be speaking from an international level and Rebecca on a UK/European level), the impact of austerity from FrancesRyan.  And all of them will also speak from a personal level too.

venue – Hilton Metropole Hotel, 225 Edgware Rd, London W2 1JU

Asha Hans ( Shanta Memorial Rehabilitation Centre by video link)
Kirsten Hearn (Chair)
Becky Olaniyi (Sisters of Frida)
Nidhi Goyal (CREA: disability and sexuality by video link)
Rebecca Bunce (ICChange)
Frances Ryan (Guardian journalist)
http://www.feminisminlondon.co.uk/timetable/

We will also have a Sisters of Frida stall for information and merchandise.

soffil flyer MS word doc

soffil flyer PDF file

Feminism in London FIL website

Check out on accessible Tube at Transport of All

nearest tube to Hilton Metrople is Egdeware Rd station.

nearest accessible tube is at Green Park Underground station

train stations Paddington and Marylebone

The Hilton London Metropole is located to the North on the corner of Edgware Road and Harrow Road. The hotel is approximately half a mile north of Marble Arch, Oxford Street and Hyde Park and next to the A40(M), with easy access to M40, M1 and M25.

The car parking is located in Harbet Road, just at the back of the hotel. From the hotel entrance in Edgware Road continue north and turn left at the first corner into Harrow Road. Once in Harrow Road please turn left at the first corner again into Harbet Road. (parking £5/hr)

Cynthia Kim: At the Intersection of Gender and Autism – Part I

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thank you to Cynthia Kim for allowing us to repost this (posted originally on 19 Nov 2014) –

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

It wasn’t until after being diagnosed with Asperger’s last year that I learned about sensory sensitivities. Suddenly my aversion to dressy clothes, perfume and makeup made sense. A huge weight lifted. I’d spent decades wondering about my lack of femininity. Where other women seemed to revel in dressing up, I saw only itchy skin and painfully tight seams. Instead of making me feel glamorous, lipstick and eyeliner left me counting the minutes until I could wash my face.

Lacking the explanation that sensory sensitivities eventually provided, I spent decades feeling like I wasn’t a “real” woman.

Today I have four dresses hanging in my closet. Made of soft cottons and knits, they’re as comfortable as my worn hoodies and jeans. They’re not aspirational like my dresses of the past. I wear them when my husband takes me out on date nights. No makeup. No nylons. No tight pinching shoes. I’ve found a style that suits me, that makes me feel both beautiful and comfortable.

I’ve learned how to shop in a way that accommodates my sensory needs and I’ve learned that there is more than one way to be feminine.

*

There are many things I’ve had to learn or relearn over the past year. Mostly I’ve had to learn how to be autistic. That sounds like an odd thing to say. After all, I’ve been autistic all my life. But being autistic and knowing that I’m autistic are two vastly different things.

Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.

There are few role models for autistic women. There is no Rain Woman, no popular stereotype that comes to mind when you hear the phrase autistic woman. Perhaps that’s for the better. Stereotypes carry with them the burden of proving them wrong.

Still, we face hurdles when it comes to public perceptions of autistic adults. Again and again in my blog’s search terms I come across people searching for an answer to questions that surprise me.

Can aspie women marry? Can women with Asperger’s have children? Do aspies say ‘I love you”?

It seems we’re a mystery.

I hope that when people find my blog, they see that the answers to all of those things are yes. I’m married. I have a child. I tell my husband and daughter that I love them.

Sadly, that wasn’t always the case.

*

Women are expected to be intuitively skilled at social interaction. We are the nurturers, the carers. To be born without natural social instincts can leave you questioning your innate womanhood.

The first hint of what was to come arrived long before I’d given any thought to what being a woman would mean. At some point in sixth grade, many of the girls in my class became huggers. They hugged when they met each other and when they said goodbye. They hugged when they passed in the hallway. They hugged when they were happy or sad. They hugged and cried and squealed with excitement and I watched from a distance, perplexed. What did all this hugging mean? And more importantly, why wasn’t I suddenly feeling the need to hug someone every thirty seconds?

This was the first of many confusing conversations I was to have with myself.

I was a mother and wife for twenty-four years before I was diagnosed with Asperger’s. Over and over during that time, I questioned not only my womanhood, but my humanity. I questioned why I didn’t respond the way other women did to their children. I watched the other mothers tear up as the bus pulled away on the first day of kindergarten and felt guilty at my relief. Finally, a few hours alone, was all that was running through my head.

Looking back, I bet the other moms walked back to their newly quiet homes and felt a similar relief. The thing is, I never knew for sure because I didn’t talk with any of them. Beyond a friendly good morning at the bus stop, I was at a loss for how adult women socialized. I hovered around the fringes of social groups, watching as other moms made dates for coffee or shopping. They seemed so at ease, as if they’d all gotten the Mom Handbook while my copy had been lost in the mail.

I probably should have been envious but I was too busy being intimidated.

*

Unlike my difficulties with sensory sensitivities, Asperger’s provided an explanation but little solution when it came to socializing. I’ve had friends over the years, but not, it seems, in the way that other women do. Fortunately, I’ve made one friend who has been a constant in my adult life: my husband Sang.

Again and again as I was researching Asperger’s syndrome in adults, I came across bleak portraits of adult relationships. Broken marriages. Impossible-to-live-with autistic spouses.

Many of the challenges described in the literature were familiar. Our marriage certainly hasn’t been easy. But learning that I’m autistic has given us a new framework for understanding our relationship. Everything from why I find social outings exhausting to why I need to eat the same thing for breakfast every day suddenly had an explanation.

That understanding alone is a tremendous gift. People often question why someone my age would bother getting diagnosed. Especially someone who has a job, a family, a mostly settled path in life.

The explanation that comes with a diagnosis makes all the difference. For years, I knew something was wrong with me but I had no idea what. Most of the possibilities that I came up with made me feel bad about myself. Cold. Unfeeling. Immature. Selfish. Short-tempered.

Defective.

Getting a diagnosis swept all of those aside. Not only did I get an explanation for how I experience life, I got a user’s guide to my brain. It wasn’t an endpoint in my journey, but a starting place.

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To be continued in Part 2 . . .

Cynthia’s book