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Why Sisters of Frida?

Posted on Monday, February 22nd, 2016


logo: picture of a green and yellow bird with a blue background in a stamp like frame, perforated edge.

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/

See our last AGM with the new Steering Group.

Crowd

Posted on Friday, June 26th, 2020


Alex had never liked crowds. This probably stemmed back to being briefly separated from their mother during the Christmas rush as young child. They had been jostled by a throng of passers-by, unable to see through the densely packed crowd, who barely seemed to notice the child they were shoving past. For a brief moment Alex wondered with utter horror if they had become invisible, but then mum had appeared with her arms open and calling their name, cutting through the people like Moses through the Red Sea. It would appear that in the twenty years gone by nothing much had changed, except for the fact that this time Alex was alone.

Alex gripped the joystick and gently maneuvered themselves into the stream of pedestrians making their way towards the train station on the way to work. Their perspective from the wheelchair wasn’t that much different from that of a young child; Alex still had to duck out of the way of bags and cigarettes, dodge the self-righteous business moguls who only ever seemed to travel at hyper-caffeinated speeds, and the view was rarely something to write home about. Fortunately, Alex knew the route well, including where to dodge pot holes and jutted paving slabs, and managed to avoid getting caught in a rut, which would not only have been painful, but would have also resulted in “helpful” saints coming to their rescue (and inadvertently making things worse).

The crowd slowed as Alex approached the train station, which bottle-necked the throng of people all moving in one direction, and they had to pull the joystick back rapidly to avoid giving the man in front of them sore ankles. A rucksack swung through their field of vision, and Alex felt the breeze as it sped by, close to their face. If the owner noticed, there was certainly no apology.

Alex drifted to the edge of the crowd, digging their tickets out of their bag with their left hand while steering with their right. They were well-practiced at undoing and redoing the zip one-handed while on the move. A man in high-vis was arguing about something with a member of staff, and his bike was blocking the only gate wide enough to accommodate a wheelchair. When Alex politely asked them to let her past, they were met with grumbles advising them to be patient, and Alex had to bite their tongue not to retaliate that their boss probably wouldn’t like them being late into the office either.

Alex parked themselves in the usual spot on the platform and switched off their wheelchair, to prevent someone accidentally knocking it, or even “playing” with it while they waited for the train. A few minutes later it pulled into the station, and of course the attendant who should have provided the ramp was nowhere in sight. By the time the ramp arrived, the train was packed tighter than a tin of sardines, and Alex was told that they would just have to be patient and wait for the next train. This was precisely the reason Alex always left far more time on her commute than necessary; this was hardly an exceptional circumstance. As the train Alex should have been on pulled away, it, of course, began to rain.

The rain quickly became torrential and was pouring off of Alex’s hair in streams that soaked their back. Water dripped over their face making it hard to breathe properly, and their trousers were plastered to their legs. By the time the next train arrived, Alex was soaked to the skin.

Fortunately, this time the attendant was already waiting with the ramp and Alex was one of the first to enter the train. They gently kicked someone’s bags out of the lone wheelchair spot and reversed in, ignoring the discontent grumbles as whoever owned the bag was forced to use the luggage rack instead.

As they started moving, the packed carriage was already becoming warm and humid as rain-soaked passengers began to dry off. Alex had a few stops before their destination, so dug their phone out of their bag, plugged in headphones, and began scrolling. A few minutes in there was a muffled noise.

“Um, emscoose me, ey, ello.”

Alex looked up and begrudgingly removed an ear piece as a stranger leant uncomfortably close to them.

“Hi, I think it’s very brave getting on a train in your condition. Don’t you need someone to look after you?”

“I’m fine, thanks,” Alex managed sharply before starting to re-insert their earphone.

“No need to be rude, just looking out for vulnerable members of our society.”

Alex turned the volume up.

Eventually the train began to slow down for what would be Alex’s stop, and they had to loudly and clearly announce their presence as they inched forward, people stumbling clumsily into the way in their panic at seeing someone disabled using a train.

The doors slid open and a ramp appeared almost immediately, much to Alex’s relief. Once it was securely in place commuters immediately began to barge past, grumbling at how difficult it was to walk down the steep ramp, or quite literally just stepping over it as they moved down the platform. Eventually there was a brief window of opportunity, and Alex managed to make it down onto the platform without breaking any ankles, however much they would have liked that.

They thanked the attendant and started making their way towards the single gate they could use, ticket in hand. This time it was a suitcase blocking the access, but this time Alex didn’t ask, and just shoved the case to one side. The station clock, when it became visible to them through the masses, showed that they would only just make it to the office on time. They pressed the joystick forward, and darted out into the city.

Emma Steer

Emma is a gender-fluid bisexual who just so happens to use a powered wheelchair, and lives in Leeds, England with their husband. They work as a data handler in medical research, and outside of work like to play video games and attend local wrestling shows. They are the author of Diary of
Disabled Person (diaryofadisabledperson.blog), an award-winning blog documenting their life with Myalgic Encephalomyelitis and endometriosis. You can follow them @diaryofadisabledperson on Facebook and Instagram, and @WheelsofSteer on their very sweary Twitter.

This is part of the Sister Stories series.

In solidarity: Black Disabled Lives Matter

Posted on Friday, June 12th, 2020


image of a black fist with a loop in a figure 8 joining fist with an orange background.  Text on wrist 'Black Disabled Lives Matter' with @jtknoxroxs in the right hand bottom corner
Black Disabled Lives Matter with thanks to @jtknoxroxs for the imag

Sisters of Frida stands in solidarity with the Black Lives Matter movement globally and in the UK. We cannot do that without including Disabled Black Lives.

Racism and ableism are intertwined.

From deaths in custody to the hostile environment, from the school
exclusions to austerity policies, Black lives and, in particular, Black Disabled lives are devalued by systemic and structural racism and ableism. The coronavirus pandemic has laid bare health inequalities in the UK: Black people are four times more likely to die of Covid-19 than white people
and deaths of people learning difficulties have gone up by 134% during the pandemic.

We fight for a world where Black Disabled women are valued, cherished and can thrive in our communities.

Cripple is my safe word: sex inclusion for the narrow-minded

Posted on Monday, May 25th, 2020



Let me start by setting the scene: I’m using the curvature of the sofa arm to
rest across, the cushions are being pulverised into the crook of the chair as
my elbows press down, my hair is pulled back, and for a brief second, I no
longer remember which way is up. The lack of perspective adds layers of
pleasure and sweetness only misdirection can give. It is bliss. The bath I had earlier keeps my hips flexible to my partner and the painkillers prevent the pleasure subsiding into pain. All this in the name of sex. Brilliant, amazing sex with somebody I love.

In the background is a not so distant memory of a charity advert. At first
watch, it brought me tears. The message: arthritis has stolen intimacy from
someone you know. Originally, I couldn’t get my head around the idea of it.
Was it supposed to be saying I was too disabled to have sex? Or was it simply saying that sex wasn’t natural for somebody like me? I understand that everybody experiences arthritis differently. It’s the one thing I find most beautiful about living with a chronic illness within a disabled community. Every day comes with a multitude of differences, and no two are experienced the same. Diversity and adaptability are superpowers in the face of all the you can nots we are told.

So why did they see this advert as fitting? Intimacy is not a privilege reserved for some, nor is it stripped away completely by chronic illness. Sex is not a three-step recipe of getting it up, getting it in and getting it off. There are so many more nuances and experiences to be had in sex than just those three.
There is touch and sensitivity, blindfolds and descriptive play, toys and cotton buds. We have hoists that double up as swings, and hand grabbers that pinch. There is a realm of imaginative play that belongs to every one of us if we choose to express ourselves in that way.

The first time I saw this advert I was furious at the implications it made. The second time it came on I was prepared to prove it wrong. I’m not saying sex is the answer, but it sure as hell made me feel better. Collapsed on the sofa after recovering with my partner I realised something important: closeness isn’t defined by somebody else, nor a pity-seeking advert. It was the way we melted together, and how we laughed at the silliness of it all. It’s in the shared state of vulnerability and trust that makes it intimate, not in the way others seek pleasure. So, to my sisters out there, let me say this; when the world tells you that you are too different to be human, remember that sex is revolutionary. Be proud of who you are in all your difference because, in the face of ableism, orgasms are activism.

Heather Lyall
Heather Lyall

Heather splits her time writing YA novels and studying a BSc in Nursing at Canterbury Christ Church University. Diagnosed with Rheumatoid arthritis at the age of 13, writing has become a vital component of pain management
and expression in her life. Her debut novel, Murder the March Hare, will be published later on this year. Find her on twitter @HevJaneLyall or on
Instagram: heather_jane22

this is part of the Sister Stories series.

Sister Stories: Sisters of Frida submission call-out

Posted on Tuesday, May 19th, 2020


We’re excited to announce a call-out for the new Sisters of Frida blog series, and we need your help!

This ongoing blog project is for you and will be shaped by you, the Sisters of Frida community. It will be an online space to share your experiences, stories and creativity, and help us to create a digital sisterhood and archive of disabled women’s voices.


We want to showcase work by writers and artists living with chronic illness, mental illness, and disability. Your work doesn’t need to be about those experiences exclusively, but we welcome and encourage submissions along those lines.

We’re looking for contributions of things that inspire you, this can include non-fiction, fiction, poems, illustrations, photographs, essays, reviews, etc.

Here are some quotes we like:

“At the end of the day, we can endure much more than we think we can.” – Frida Kahlo

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” – Audre Lorde

“Hard things are put in our way, not to stop us, but to call out our courage and strength.” – Unknown



If you’d like to contribute: 
  • Send all submissions with the subject SISTER STORIES: *TITLE OF PIECE* to [email protected]
  • Please include a short third-person bio and your pronouns, but if you’d like to remain anonymous, that’s fine! Just let us know. If you also want to include a brief background about the piece, please feel free to do so.
  • Attach submissions to your email in an accessible format.

  • Non-fiction, essays, reviews should be no longer than 1,000 words.
  • Poetry/Artwork – Please submit no more than 5 individual pieces.
  • Languages: We welcome submissions in any language but please provide a translation if possible.

The blog will be updated monthly, so expect a calendar’s worth of stories! The frequency may increase depending on the number of submissions.

If you have an idea but need a bit of direction, let us know! We can work through it together, and help to guide whatever it is you’re creating. Just email [email protected]

* Sisters of Frida is an inclusive safe space for all self-identifying and non-binary disabled women. We do not tolerate sexism, homophobia, racism, transphobia or other forms of discrimination based on sexuality, age, gender expression, religion, education or socio-economic status.

Jennifer Brough is the curator of this set of stories/blog.

youngish looking white woman with long hair smiling into the camera
Jennifer Brough @Jennifer_Brough

Jennifer is a writer and editor who lives with fibromyalgia and endometriosis. She is involved in projects at the Feminist Library and seeks to amplify the voices and experiences of self-identifying women.
She is learning Spanish and dreaming of visiting Frida’s house in Mexico, so is very happy to be part of the Sisters of Frida commu
nity.

The Impact of COVID 19 on Disabled Women from Sisters of Frida

Posted on Tuesday, May 12th, 2020


Voices of Disabled women in the pandemic

About this paper

This paper started as a brief but we sent the first version in response to the Women and Equalities Unequal impact: Coronavirus (Covid-19) and the impact on people with protected characteristics. We know that the experiences of Disabled women are not visible in the wider response to COVID-19.

The need to add the narratives focused on Disabled women is the reason for this paper. We feel that the narrative about Disabled women, when available, is very one dimensional. There is no consideration that Disabled women occupy multiple roles, we are diverse and any considerations have to be viewed through an intersectional lens.  We are strongly aware that new measures under the Coronavirus COVID-19 2020 Act threaten rights-based protections and reduce our independent living and in some cases our lives.[2]

We were asked to join a coalition of women’s organisations[ calling on the government to take on certain actions, and to contribute evidence from the perspectives from disabled women under the impact of COVID-19. We put out a call for evidence, asking disabled women to share their experiences of COVID-19 and its specific impact for intersecting identities. We want to ensure the voices of Disabled women are visible as they are often omitted as examples of multiple protected characteristics.

We are working with Inclusion London and ROFA (Reclaiming Our Future Alliance) on the rights of disabled people under the Care Act 2014 where these are being eroded, the urgency of access to food and services for disabled people, and access to PPE (Personal Protective Equipment) for their Personal Assistants (PAs) and themselves.

Disabled women’s needs under COVID-19 measures are no less significant than those of the rest of the disabled community, but disabled women face specific issues.

We are looking in particular at those issues that are impacting rights at the intersection of gender and disability during this crisis.

Please access the paper in (PDF) and/or in Word

A Blog and article start

Posted on Friday, February 21st, 2020


We are starting on a new series of blogs from sisters on topics that focus on disabled women.

37 seconds: A review of the realest film you will see this year

This is a perspective instigated by the current (2020) Japanese film, 37 Seconds, written by a young disabled woman. She wishes to remain anonymous. F writes about similar parallels in her life as a young disabled woman.

At UN CEDAW review in Geneva

Posted on Sunday, April 7th, 2019


4 women, one black and 3 white women standing behind East Asian in a raised power wheelchair holding a Sisters ofFrida banner. Behind them are many flag poles.
NAWO trustees, Justina Mutale and Margaret Clark, Viviene Hayes from the Women Resource Centre joined Rachel O’Brien Eleanor Lisney from Sisters of Frida outside the Palais de Nations with the SOF banner

 On the last week of February, two Sisters of Frida, Rachel O’ Brien and Eleanor Lisney joined other women NGOs for the review of UK government on CEDAW – The Convention on the Elimination of all forms of Discrimination Against Women,  often referred to as the ‘women’s bill of rights’, and it spells out women’s right to equality and non-discrimination. They were funded by the EHRC to attend the examination.

They met with Ana Peláez Narváez, the only disabled woman on the committee and they spoke on the needs of disabled women and the importance of CEDAW.

Before the event, Eleanor was in the core group steering group in the shadow report prepared by the Women Resource Centre for England (see the shadow reports). We also did our own Shadow Report supported by Women Enabled International and met with Amanda McRae while they were in Geneva.

Here is a podcast by Eleanor about the CEDAW review and the transcript 

Concluding observations on the eighth periodic report of the United Kingdom of Great Britain and Northern Ireland – Advance unedited version

CEDAW 2019 – concluding recomendations with references to disabled women

Government is failing on disabled women’s rights, UN is told report from Disability New Service

5 women in a circle, one in a wheelchair.

Ana Peláez Narváez meeting with Rachel and Eleanor from SOF, Janet Veitch, Viv Hayes from WRC and Amanda McRae from Women Enabled International.

Rachel and Eleanor with other delegates from Women NGOs

Rachel speaking to the CEDAW committee

Sisters of Frida displayed at Rawthmells, RSA’s new coffeehouse

Posted on Wednesday, October 31st, 2018


We are proud to be one of the first to be displayed at the new Rawthmells, the RSA’s 21st century enlightenment coffeehouse. it is an honour!
The Royal Society for the Encouragement of Arts, Manufactures and Commerce is a London-based, British organisation committed to finding practical solutions to social challenges, with a Fellowship that is a global network of 29,000 people supporting the RSA’s mission to enrich society through ideas and action.

Rawthmells, the RSA’s 21st century enlightenment coffeehouse, is a place where Fellows and members of the public can encounter new and inspiring ideas.

Address for the RSA House 8 John Adam Street, London WC2N 6EZ.

(There is a separate entrance for level access entry – ring the doorbell to gain entry.)

Through a system of changing displays, coffeehouse guests will be exposed to the best new ideas from our Fellowship, stories from the archive, briefs and designs from the Student Design Awards, and the work of the Royal Designers for Industry appointed each year.

Changing displays in the Gerard Room, the first room as you enter the coffeehouse, place a spotlight on the innovative and interesting work of Fellows around the world including that of Sisters of Frida’s.

Sisters of Frida were awarded a Catalyst Grant by the RSA in 2016 to run a series of workshops which focused on neglected conversations about disabled women and sexuality. Read more in the blog written by co founder Eleanor Lisney

Do drop in to have a look if you are a RSA Fellow and let us know what you think by commenting below or writing to [email protected]

https://www.thersa.org/fellowship/coffeehouse/displays

https://www.thersa.org/fellowship/coffeehouse/displays/sisters-of-frida

Group of women, 2 wheelchair users, with a colourful textile banner saying 'Sisters of Frida' Hear the voices

With the SOF Banner outside no 10 downing street for Processions 10th June celebration for women getting the vote (photo with the display)

Blogs and articles

Posted on Thursday, October 25th, 2018


We are starting on a new series of blogs from sisters on topics that focus on disabled women.

37 seconds: A review of the realest film you will see this year

First photos and some videos from the celebratory event on 4th May

Posted on Tuesday, May 22nd, 2018


Our celebratory event was a great success – thank you very much for those who did make it and thank you too for those who sent messages / videos because they couldn’t make it.

 

photos taken by Wasi Daniju at the event are at the SOF flickr account but to give you an idea….

 

People seated in a very well lit room with full length windows with tent like white canopies overhead. lots of wooden floor space

At Greenwich Yacht Club photo by Ruth Gardiner, Chocolate Films

Watch this space, more videos coming later …and of the Eleanor and Sophie Memorial launch