Please find us at our new website.
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:
We wish her all the best!! and hope a few of us will manage to get to see her performance!
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.
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.
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:
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 firstname.lastname@example.org 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.
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.
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’
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.
A big thank you to Lisa-Marie Taylor, FIL’s organiser, for inviting us!
We did some publicity by having a stall and we ‘re grateful to Annabel, Zara, Jacqueline and Sophie for helping us with the stall!
(Click on photos to get a bigger photo)
Real Media came to do do a short video feature on it – many thanks!
Frances Ryan also wrote a piece for the Guardian on the event A Disabled Woman’s struggle is any woman’s struggle
Obi was kind enough to video the whole event – if you wish to follow it in its entirety
great additions from Nidhi Goyal and Asha Hans Part 1
with Q&A from audience
Asha Hans video
TRANSCRIPT Asha Hans (Word doc)
Nidhi Goyal’s video
TRANSCRIPT Nidhi Goyal (Word doc)
Frances Ryan’s video
TRANSCRIPT Frances Ryan (Word doc)
Becky Olaniyi s video
TRANSCRIPT Becky Olaniyi (Word doc)
Rebecca Bunce’s video
TRANSCRIPT Rebecca Bunce (Word doc)
Kirsten Hearn’s video
TRANSCRIPT Kirsten Hearn (Word doc)
Thank you all for having taken part in the event!
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.
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)
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)
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.
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.
To be continued in Part 2 . . .
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 together for change.
I’m sick and tired of having to challenge inaccessible practices within the Labour Party (an in the rest of life too). I’ve got better things to do than be tied up bashing down the doors, so I and others can participate. The discrimination spans all access issues, so all disabled people are targets.
Again, and again, and again, we give guidance on how to make docs accessible. “What part of the words “PDFs are inaccessible for people using text to speech assistive technology, so give us a word doc instead”, isn’t clear? It’s hardly any different in impact from “what part of the words, I haven’t got wings you know so how am I going to get into that riddled-with-steps venue you insist on having your meetings in?”; or “What did you say?” (when a sign language interpreter or an induction loop, isn’t present.
I’ve just opened an email from the Labour Party re the women’s conference tomorrow. Granted, it arrived yesterday evening, but I was chairing a scrutiny evidence session at that time and chose to go to bed afterwards, rather than download my emails. I chose also to do my day job today rather than read my home emails. As a consequence of this, I am only now dealing with yesterday’s backlog. Oh and I have checked, there’s nothing in today’s bunch which provides the accessible document.
Arguing for inclusion within the Labour Party is definitely one of those part time unpaid jobs that I am forced to do if I want to participate in the party. I could use that time instead building a stronger party and working to deliver a Labour Government headed by Jeremy Corbin, in 2020. I don’t care that because of the leadership election and the shadow appointments process, it’s been hard to confirm speakers etc. How difficult is it to produce a word version of a conference agenda, which was initially created in word, anyway? I mean …. !
Providing inaccessible documents is at the very least laziness, but it could hardly be argued that the Labour Party is ignorant, since they have been told. Yes, if poked,, they will deal with access requests, but we shouldn’t have to keep reminding them. It’s not like disabled people have only just been invented; or that we havn’t been campaigning for inclusion since the dawn of time. My question is, why are these mistakes still happening? I don’t know how disabled people can effectively influence party policy, raise the issues of concern to disabled people out there, in the party, if we can’t even get in the door, metaphorically or actually without kicking up a stink. So, not having enjoyed women’s conference last year in Manchester, I thought I wouldn’t go to the women’s conference this year; then when Jeremy was elected, I thought I would, in anticipation that the leader is going to address the women’s conference. Now, thanks to not getting accessible info about the women’s conference, I’ve decided I’m not going. So there will be one less stroppy disabled woman there tomorrow …. and I am sure that lack of clarity about access, belief that things won’t be accessible, feelings that disabled women are not important, are also reasons why less disabled women than perhaps who want to be there, will go to women’s conference tomorrow. And I’ve no doubt that other members of disability labour will have to spent time and energy battling away at conference, trying to fire-fight on access when we could be doing something much more important, like effecting policy, talking about why the austerity agenda, whether heavy or light is the greatest attack on disabled people in our living memory and why labour must not only defend disabled people’s rights but actively promote a disability rights based agenda. Not that I’m repeating myself, but I and others have been saying the above since exclusion first politicised us, in my case for 40 years. When will non-disabled people get it that they can remove disabling barriers if they want to.
Read the rest at Kirsten’s blog
Sisters of Frida is a member of ROFA (Reclaiming Our Futures Alliance). In times of austerity, we see disabled and older women are likely to be coerced into assisted suicide from different pressures.
If the Assisted Dying Bill is passed, some Disabled and terminally ill people’s lives will be ended without their consent, through mistakes, subtle pressure and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome which can never be undone.
If we structure society in such a way that many people have desperate, miserable lives, what sort of choice is it when people choose to kill themselves?
Maud lives round the corner from me in south London. She is 90 and on her own. She remembers a time when everyone knew everyone else, and when there was genuine community solidarity. Nowadays people come and go, she says, and young people can’t be bothered with the elderly. She is often lonely. “Even the doctor came round to see me and asked me if I wanted to commit suicide,” she says.
(photo of a NotDead Yet protest by Eleanor )
From Inclusion London
With two Assisted Dying bills currently before parliament, it is really important that Deaf and Disabled people and our organisations speak out loudly against the legalisation of assisted suicide and raise awareness of the threat this poses to disability equality.
Our message is that we want support to live not die. At a time when essential support is being taken away from us, when the challenges we face are exponentially growing as a direct result of adverse government policy, it is more dangerous than ever to introduce legislation which encourages suicide as a solution to the barriers Disabled people face.
We say: give Disabled people a right to independent living before a right to suicide.
Below are different ways that Disabled campaigners and our supporters can take action and get involved. We realise that not everyone has the time to do everything but anything you are able to contribute to the campaign would be valued.
1) Sign up the Reclaiming Our Futures statement. It’s quick and easy to do: just email your name to email@example.com with ‘AS statement’ in the subject line. We are asking organisations, campaigns and individuals to sign up before the end of August. It’s really important we can show there is wide support for the case against legalisation.
Reclaiming Our Futures Alliance Statement
We are opposed to legalisation of assisted suicide. It will remove equality and choice from disabled people and further contribute to our oppression. If the Assisted Dying Bill is passed, some Disabled and terminally ill people’s lives will be ended without their consent, through mistakes, subtle pressure and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome which can never be undone.
[Reclaiming Our Futures or ROFA is a network of grassroots Disabled people led campaigns and organisations across England. For more information see: http://www.rofa.org.uk/%5D
6) Check if your MP is one of the named supporters of Marris’ bill? DPAC is encouraging campaign groups to organise protests outside the constituency offices of those MPs who have put their name to Marris’ Assisted Dying bill. If you would like support to organise a local protest or for more information contact Mail@dpac.uk.net(See http://www.publications.parliament.uk/pa/cm201516/cmhansrd/cm150624/debtext/150624-0001.htm#15062462000011 to check if your MP is named)
Here is a good Assisted Dying Bill Information_Easy Read version explaining the Assisted Dying Bill for everybody from ROFA (MS Word document)