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.
We’re pleased to share a new resource on accessible venues in London, researched and explored by Sisters of Frida. It was written as a guidance for accessible venues in London as researched and explored by Sisters of Frida and funded by the GLA.
This resource brings together insights on accessibility, highlighting the importance of inclusive facilities and venue design.
In honour of Alice Wong, Sisters of Frida would like to gather in community to celebrate her life.
Sisters of Frida will be hosting a community gathering to watch the livestream of Alice Wong’s celebration of life memorial from the United States. We invite you to come together to celebrate her life, her work, and the wisdom she shared with the world. Alice Wong remains a powerful voice for Disability Justice; a comrade in struggle who through her writing, activism, and leadership fought for a world in which all beings are free. Alice cherished friendship, community and storytelling and in the days after her passing, a message she had prepared was shared widely. In her own words: “I’m honoured to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down.”
Where: Calthorpe Community Garden, London, England
Disability History Month in the UK takes place from the 20th November to the 20th December. At Sisters of Frida, we look at the experiences of disabled women and gender diverse people, as our stories are usually overlooked in disability spaces, or feminist spaces.
We discuss topics people don’t always acknowledge: isolation, relationships, sexuality, and our safety as disabled women. There’s also the emotional and practical labour we do, as many disabled women are also mothers and/or carers.
This Disability History Month, we’re celebrating the solidarity of disabled women and gender diverse people. We hope that more people pay attention to understand the issues we face, and support the work that we’re doing.
As the year draws to a close, we want to celebrate the stories and creativity of disabled women and gender diverse people. Wishing you warmth, connection, and solidarity, from Sisters of Frida.
Welcoming our new Co-Director, Svetlana Kotova
We’re excited to announce our new Co-Director, Svetlana Kotova. A founding member of Sisters of Frida, Svetlana is a Disabled lawyer who has spent many years fighting for the rights of Disabled people. She has worked in a range of advice and policy roles, supporting Disabled people to advocate for their rights locally and internationally. Svetlana is passionate about ensuring Disabled people have equal rights and can use the law effectively to challenge discrimination and social injustice. She is also a coach and looks forward to supporting others in that role.
Alice Wong a pioneering writer and disability rights activist, passed away on Friday, 14th November, in San Francisco.
Wong became a powerful voice for disability justice, challenging systemic ableism through her writing, activism, and the Disability Visibility Project. Known for her sharp humour, she authored Year of the Tiger and edited collections such as Disability Visibility, earning a MacArthur “genius grant” in 2024.
In the days after her passing, a statement she had written for social media resonated widely, celebrating friendship, community, and storytelling while sharing her journey toward self-acceptance and calling for more stories from disabled people.
In her own words, “I’m honoured to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down.” Her legacy of advocacy, courage, and wit will endure.
Why Changing Places are important for disabled people
The more we research into accessible venues, the more we realise how important it is to have Changing Places toilets in order to be inclusive.
For those who do not know what Changing Places toilets are, they are toilets with extra space and equipment such as hoists and an adult changing table for people who has less mobility and need extra help to access facilities. Standard size ‘accessible ‘ toilets are too small to accommodate helpers and do not have the equipment.
Equipment found in Changing Places includes:
A height adjustable adult-sized changing bench
A tracking hoist system, or mobile hoist
What makes Changing Places Accessible?
Enough space for a disabled person and two carers
A centrally places toilet with room both sides for a wheelchair to maneuver
A privacy screen or curtain
A wide tear-off paper roll to cover the adult changing bench
A large waste bin provided
Non-slip flooring
Without Changing Places toilets, many disabled people are restricted in being able to travel, attend events or work. When it comes to disabled people who menstruate, there is that added urgency.
At Sisters of Frida, we try to locate venues that has Changing Places toilets or have them nearby. We also need to ascertain that they are well maintained and functional.
We are delighted to share that the City Bridge Foundation has awarded Sisters of Frida a significant grant over two years through its Bridging Divides Programme. This generous support represents an important milestone for our organisation and will play a crucial role in advancing justice for disabled women and gender diverse people in London. The funding will strengthen community-based knowledge, enhance cross-sector collaboration, and ensure full participation and access support for all our members and wider contributors. It will also provide vital resources for consultancy work and the development of a pilot research project.
The Women’s Resource Centre will act as our host organisation on behalf of Sisters of Frida throughout this period. In addition, this grant enables us to expand our team. We are delighted to welcome Anahita Harding as our communications, outreach, and relationship management officer and Niku Gupta as our new administrator. They will be working on Tuesdays and Thursdays and can be contacted at admin@sisofrida.org and comms@sisofrida.org respectively.
We are deeply grateful for this invaluable support and look forward to the opportunities it will create for strengthening our work and amplifying the voices of disabled women and gender diverse people across London.
Are You Comfortable Yet? Disability Arts Online zine review
This review, written by Mike Layward for Disability Arts Online, explores Are You Comfortable Yet?, a zine created by our new comms team member, Anahita Harding. The piece examines how the zine engages with disability and performance, and how live performance can be translated into zine form.
Eleanor Lisney. Photo taken from University of Greenwich
We are delighted to announce that our director, Eleanor Lisney, has been awarded an Honorary Doctor of Art by the University of Greenwich in recognition of her outstanding contribution to disability rights and culture. A globally respected campaigner and writer, Eleanor co-founded Culture Access and Sisters of Frida, has influenced national legislation, and has represented disabled communities on international platforms, including at the European Parliament.
Since 2018, she has played a pivotal role at Greenwich, pioneering the first Disability Culture Festival, contributing significant research, and leading a UKRI-funded project at the University centred on disabled people’s lived experiences. Her dedication to disability rights, her insistence on an intersectional framework, and her commitment to amplifying marginalised voices continue to inspire.
Disabled, Queer, and Broody
We’re grateful for this piece from our anonymous contributor. Thank you for your continued support:
Anon
“I don’t want kids. I can’t afford kids. I don’t have enough energy to take care of me, sometimes. I wouldn’t be a good parent. And I really don’t want to be pregnant, ever.
And yet, I got broody. Again. Every time I’m in a good relationship, I start to want to cuddle stuff, and start crying when I see anything I find adorable that I can’t cuddle if my hormones are a bit higher than average. Fluffy animals are a particularly high cry risk.
“Get cats!” or “Get IVF!” are what some of my friends have suggested. These options are both unaffordable in money and spoons.
I know there are more options, like being a step-parent, or fostering, or adoption. I know many disabled people make it work, but I don’t think I could do it; I wouldn’t be able to be the kind of 24/7 or consistent pattern parent that I would want to be.
I could be great as an only sometimes, but I don’t have siblings who need a niblet-sitter.
But I have energy that’s going to find somewhere to go, and my younger PAs are already getting smothered.
Trying to think what I realistically want is tricky. Anything I write sounds like a cheesy advert from the 90s:
Do you need encouragement to do something scary? Having a bad day? Got something to celebrate? Perfect, I will lean my head on your head and say supportive things, if you put your head on my shoulder. I can also make comforting noises and pasta! If you’re a grown human who needs some extra warm vibes just occasionally; this Disabled, Queer, and Broody might be for you! T-rex arms and positioning hairband included!
If I had the money, I’d build a queer-safe flat block for adults who need to get away or have been kicked out of their previous home.
Everyone has their own space and everything they need to live, but also knows that there is a friendly person just down the hall who has made extra potatoes, and will tell you that your new shoes look great, and ask how you’re doing and mean it! You need to know how to plait your hair or mend something?: just ask! Your home comes with a Disabled, Queer, and Broody neighbour! (Spoon levels not guaranteed).
At the moment, I have houseplants. They’re not very cuddly – particularly the cactus – but they’re well-fed, well-watered, and having babies of their own.
Plants included!
I haven’t found the solution. I don’t know what realistically that might be. There might not be one.
But right now, I think a lot of disabled people and a lot of queer people need some hugs, so just yell if that’s you and either I or someone else who feels like this will appear in a cloud of glitter and carbs.”
Thanks.
OpenOut
Photo courtesy of OpenOut.
A warm and merry Christmas from OpenOut (formerly Open Barbers) Hair. Many of us have been welcomed into their salon over the years, and they’ve generously offered home haircuts for disabled people when needed. E-cards can be bought in store, and merchandise from their online shop. All proceeds go toward helping low-income clients access affordable haircuts
In this ezine, we have some artwork from Culture Access. They worked together as a group and individually. These have been in an exhibition and will be housed, hopefully, more permanently in an art gallery when it opens in the summer.
Culture Access
Culture Access CIC, a collective of Deaf and Disabled people, had an exhibition of their joint artwork at Woolwich Centre Library. It is a pan-disability group and Deaf, Blind and Visually impaired, neurodiverse people all worked together. Many of the group had not produced any artwork before and here are some of their graphic and tactile examples. They have an offer of a longer exhibition in a couple of months in south-east London, to be announced later.
Here are the artists’ comments on their artwork:
Anahita Harding: “this collage weaves together green fabric knots with a variety of colours and textures— inviting hands and eyes to explore.”
Eleanor Thoe: “Durian is a favourite fruit from East and South East Asia. It is a strong and pungent fruit and has a spiky exterior. But the delicious creaminess is unbeatable. It brings back memories and reminders of my heritage as an immigrant here.”
Kamila Miri: “Music has charms to soothe the savage beast and always brings people in peace and harmony.”
Sajida Shah: “I don’t need vision to see my artwork, I can feel it and it’s just as good.”
Sue Elsegood and Kate Brown: “When diverse threads weave together they become stronger & create something uniquely beautiful”
Commission on the Status of Women Parliamentary Briefing
Eleanor and Kym went to the briefing at Portcullis House for Sisters of Frida.
2025 is the 30th anniversary of the last UN World Conference on Women held in Beijing and the ‘Beijing Declaration and Platform for Action’ (BPfA) which stated commitments of participating countries. The BPfA remains a foundational document for advancing towards equality of women and men. 30 years on, the BPfA has not been fully implemented anywhere in the world.
Every year at the UN Commission on the Status of Women (CSW), the annual UN event to monitor progress on the BPfA, participants fight to hold the line against a roll-back on the rights for women and girls globally.
This March, a sizeable UK NGO delegation participated in the 69th Session of the CSW and were active in all areas of the Commission. The UK Government endorsed and helped negotiate the CSW69 Political Declaration, which improved on the Political Declaration made 5 years ago. Yet it is not the robust document that women and girls need.
In the photo are Kym Oliver, Eleanor Lisney and Zarin Hainsworth (NAWO)
Green Paper ‘Pathways to Work’
Welfare Not Warfare
We are much concerned, as are other DDPOs and Disabled people, with the government’s Pathways to Work Green Paper. Some of us took part in the marches on 26th March.
Mass Lobby on 21st May
There is much happening to fight against the cuts.
The next big event is on 21st May, when there is a mass lobby in parliament. It’s a powerful opportunity to speak with one voice.
If you can make it, please come and meet with your MP, and tell them to vote against these harmful cuts.
There will be information provided on the day to support you, as well as volunteers from many Disabled-led organisations helping attendees.
You can also get funding to travel to Westminster and stay in a hotel if needed (see image below).
Sisters of Frida is working with the Women’s Budget Group to research the impact of cuts on Disabled women.
Many thanks to the generosity of those who responded to the questionnaire – we will keep you posted on the outcome of this research.
The questionnaire was described like this:
“The Women’s Budget Group (a feminist economics think tank) and Sisters of Frida (a Disabled women and non-binary people’s collective) are conducting analysis of how the changes to disability benefits and work support announced by the Government in March 2025 will affect Disabled women specifically. We will use the findings from this research to put pressure on MPs, politicians and policymakers, to reconsider these reforms and protect Disabled women, and Disabled people in general, from poverty and socio-economic hardship.
We are using national statistics to describe the impact these reforms will have on Disabled women. We are also doing interviews with women with lived experience of disability to better understand how these reforms will affect their lives, and the effects the announcement of cuts is already having on women’s health and wellbeing.
If you agree to take part, we will ask you to share your experiences of disability and state support by answering the questions below. Your participation is voluntary, and you do not need to answer any questions you don’t want to, and you can stop completing the survey at any point if you wish to.
Your responses will be used to illustrate how disability reforms are expected to impact Disabled women. We may use excerpts of your answers in our briefing. It will be anonymised so that the information cannot be linked to you.”
Please help with this questionnaire – to contribute with data crunching against the Green Paper: Pathways to Work: Reforming Benefits and Support to Get Britain Working. This is one response to show the impact on Disabled Women and non binary folks with the cuts. We collaborated with the Women’s Budget Group on this. We know many of us will be affected – apart from online or otherwise protests, this is another way of showing what this will cost us as a community. There’s a questionnaire – please fill it and return to sara.reis@wbg.org.uk by Wednesday 7 th May. Apologies for the short time but its to fit it into the consultation timescale.
As 2024 comes to a close, many of us look forward to the chance to switch off and recharge. However, we recognise that the Steering Group has been working hard for us with training sessions and helping with fundraising efforts.
Kym Oliver represents us at Women’s Budget Group report launch
Kym Oliver is part of the Sisters of Frida Steering Group and represented us at the recent Women’s Budget Group report launch. Here is the video, with embedded captions:
“Whatever is happening to the folks who live at the most marginalised intersection, that’s a representation of where your nation is actually at.”
Kym is also a Co-Founder of Our Living Archives and a PhD Researcher at City University. Thank you to Our Living Archives for this footage.
In the meantime, Tumu Johnson, one of our directors, was at the UNECE Beijing +30 Civil Society Forum in Geneva 19-20 October 2024, organised by the NGO Committee on the Status of Women as a service to the women and girls in the UNECE region.
She was interviewed for ‘Best Practices and Vision for the Future’, as part of Sisters of Frida, alongside representatives from other specialist organisations and international organisations working on diverse issues, to share what has worked across the region.
You Are My Net – abridged, Anon
During this festive season, we hope you can take out some time, whether during a coffee break or while on annual leave, to look back on your accomplishments from 2024.
Here is an article we hope resonates with you, in the season when so many of us are alone and lonely, to enjoy the festivities associated with it:
Every time I have a hard day, a situation, or an emergency, I have friends I can go to. Recently, it struck me that this wasn’t always the case. There were times way back when I didn’t have someone I could trust and talk to, who would help or want to. This is a position a lot of disabled people experience at some point in their lives. I worry about people I meet who don’t talk about friends, because though they may be happiest in their own company, they may not have someone who will notice when something’s wrong, or to turn to for advice.
There are times when this has made a huge difference in how a situation plays out, and this safety net is incredibly valuable to me.
And yet… We are so far apart. We hope that each other are OK rather than directly observing this ourselves. The narrower the bands of communication, the fewer signs we can use to understand how each other are doing. It takes time to learn the signs for each person, and it can be very unique to the individual. Impairments can dictate which bands are available to us, and the need for privacy can reduce these options, for example if you wish to communicate without being overheard, you may choose to use a messaging platform. Neurodivergence can also change which bands work best – I personally learn what changes in people’s voices mean far faster and more reliably than their facial expressions.
There’s a lot that I learned late that would have been useful earlier. Here’s some ideas for you to use if you wish:
Open the different communication bands as wide as possible. In person can offer facial expression, tone of voice, posture and gestures, clothing and jewelry (anyone else have an “I’m sad” t-shirt?), word choice, laughter and humming and silences and signs of joy or exhaustion like dark circles or tapping feet. Messaging can be great for saving some spoons, but traveling to meet in person when practical creates a stronger net, and means you know where you’re going if they need you, or you need them.
Learn your friends care needs, or those you can, and spend time letting others know yours. Remove as many barriers to spending time alone together, making sure that there’s space for topics and communication to be private whenever you both want this. This could be as simple as giving your home phone number to a friend so that they can call a PA in the next room for you when needed, or as critical as learning how to use an emergency med like an Epipen.
Practice getting comfortable asking others to leave the room and close the door for phone and video calls. Making this a standard practice will mean that nobody finds it suspicious that you’re asking for privacy in the event that you’re asking for support or making an emergency call about yourself or someone else.
Get a headset or earbuds, and get some for your friends. This will reduce the chance of your friend’s side of the conversation being overheard, meaning that even if you are in the same room as someone else, you can still have a semi-private conversation. This will make your friends feel more comfortable to speak with you openly, and in the event of an emergency, you can safely hear the other person and answer questions with a new code.
Use a separate digital device to others around you, and have separate digital accounts from others. Do not give your passwords to anyone. This means that emails and messages can be private, meaning your friends can share things with you confidentially and you with them and beyond, including sources of help, support, and advice. Sharing devices and passwords can mean that others can check your search history, messages, emails, and files.
Set up code words with trusted friends that let them know something is wrong, and what to do. “Do you want to come over for pasta bake tonight?” as an agreed code for “I need you to come over quickly”. Creating your own codes will let trusted friends know what’s going on without the code becoming known to someone who you may need assistance to get away from, or let them reach out to you for help when they don‘t have privacy. Be creative.
Make sure your friends know what level of privacy you have on each platform and each time. This will mean that they will know when it’s OK to talk about sensitive topics with you – and not get you into avoidable awkward situations.
Get into a rhythm. Got a friend who usually calls you twice a month hasn’t called for 2 months, and keeps saying sorry but not saying why? That could be a sign that something’s not OK.
Build your net. Find people you enjoy being around and trust and can rely on. This article was written with the help of 4 other people, all of whom I would trust in an emergency.
Talk about safety with everyone you want to be safe. Add your own ideas to this list. Ask others for their tips. Put them out there for others to find.
We have to build a net. You are my net.
Seasonal Greetings from the Sisters of Frida team…
We would like to welcome the new Sisters of Frida Steering Group. We had a great first meeting last month.
The new members of Sisters of Frida Steering Group are:
Emily Reynolds
Isabel Marler
Lena Mohamed
Kym Oliver
Priscilla Eyles
Megan Belcher
And Yen Godden
We are very happy that they have joined us. We will have some onboarding sessions with them to introduce them to the collective to start with and then they will steer the future of Sisters of Frida!
The photo is of the new Steering Group with the co-directors, Rachel O’Brien, Eleanor Lisney and Tumu Johnson. We look forward to running future events and projects with you!
Song by Dennis Queen
As is appropriate to the election season, we would like to celebrate with Dennis:
The video has captions via the captions button.
Art for a Free Palestine
The red poppy is the national flower of Palestine. It is made up of the three colours of the flag red white and green. The poppy’s red petals are often seen as a symbol for the bloodshed and sacrifices made in their struggle for freedom. In the spring Palestinian fields are blanketed with these flowers.
This is an art for action exchange! Follow the lead of BDSMovement.net/get-involved a Palestinian-led Boycott, Divestment & Sanctions movement for a free Palestine & an end to this genocide. I have also included a list of ways you can take direct & indirect action with all the organisations & people tagged.
This art for me, expresses the strength of the Palestinian people and I hope is a way to encourage actions for Palestine. For those who have taken action, may download and use this artwork for free. Spread the call to action by sharing on social media or printing and sharing.
Examples of ways you can use this art:
Print as signs or flyers with call to action for rallys or events,
Post on social media with actions list,
Print as wall art/ posters for your window (will print up to A2), paste ups for your local area, stickers, digital wallpaper, social profile photos or banners, free to use!
*please don’t modify the art.
If you would like to print & sell for Palestinian fundraisers or events just contact Yen
– Yen Godden, Artist & Community Organiser (also Sisters of Frida Steering Group) @YenOutLoud
View more artwork, links and ways to take action via Yen’s Instagram post, or download all of the art here.
Video clip from the last social
We had our last of 4 socials funded by the Greater London Authority, where we shared food and talked about our experiences. We spoke about why these events are so important to us:
Lastly but not least we have a lovely article on relationships:
I grew up with the idea that I would meet a non-disabled man who would sweep me off my wheels in my late teens, have 2 children in my 20s, have a part time office job and some side projects that would make some small but important contribution to science. My husband would have a 9 to 5 doing something interesting that I enjoyed talking with him about. And that was it. No friends, no dilemmas, no travel, no PAs. An almost ordinary life.
Now in my mid-30s, I can say that’s not how it went, and I’m very glad of that. Real life relationships are messy, and unexpected, and unpredictable. My white picket fence life would have been rather dull, and a lot more lonely, and even dangerous.
My view of what I wanted and was going to get didn’t change until my early 20s. I met a man with a very similar set of impairments and needs to me. We also had the same sense of humour, taste in music, food preferences, and similar habits, and life experiences. We talked, all the time, and he understood everything I was saying (a new experience for me), and we took care of each other in all the ways care services don’t. We fell asleep watching movies together, sang duets, ate curry, and just enjoyed every moment we were together. He was a joker, making me laugh so hard I spat tea out of my nose. I was relaxed and free. He was an artist, and an activist, and quickly became the centre of my future plans. I imagined a cute little bungalow, with a couple of carers and a couple of cats. I would work in an office and he’d paint and we’d take care of each other and laugh and sing, forever. And then, due to clinical negligence, he died.
Much of what I’ve done since then is about building a world where this could have been. Arguing with medical professionals to improve standards of care based on knowledge discovered long before I was born, but somehow not yet implemented. Basic access to essentials like housing and care. I even ended up in his job role at one point. Making sure I do things that he would have been proud of, would have made him laugh, and cheer, and sing. Making sure I sing.
And so I moved out of my parents’ house on my own. I’ve done things I never thought I could, made friends (which wasn’t something that came naturally to me). He left me alone with the tools to be not alone, and to deal with the world alone with the tools to deal with it, and to find my own way alone with the tools to find my own way.
Why am I writing in a feminist newsletter about a man? Because he’s a part of my story that led me to a world not dependent on men, or anyone else, to choose my path, but myself. He had confidence in me and my skills and passions that others around me didn’t at that time, and encouraged that confidence in me. That shouldn’t be rare, and it is precious. I wish that for everyone, and have met so many women who need it. I try to pass it on.
Since then, I have met others who share in that confidence, and who have kept me afloat. I have also met people who believe the opposite, that I’m incapable and ugly and worthless and unlovable and unhappy. Sadly, many of these people have been women, pushing others down to make themselves feel lifted up.
What I’d like my future to be like now looks very different. Whether I’m single, have a partner, or am married, I want to be doing something I enjoy. Monotony, predictability, and following the fairytale are not for me. Desperately trying to keep up whilst pushing my joy down and having it crushed by others can get in the bin. I want those around me to give me confidence and to be able to do that for others. I want to be so proud of me, you, and our community that I start singing. I want to spit tea out of my nose again. And I want to build where this can be.
We’re meeting this Sunday, 23rd June, between 1-3pm, at a venue close to Kings Cross. We’re lucky enough to have Tumu Johnson speaking about Pride and disability, so be sure to join us this LGBT+ Pride month.
Let us know via email that you’re coming so we can send you the exact address: sisofrida@gmail.com
Please also tell us your access and dietary requirements. See you there!
This event is funded by Greater London Authority (GLA).
It is Easter weekend, we will celebrate together with this social. Our friends celebrating Ramadan will be able to take the food with them. We will have a discussion on what intersectionality means, led by Tumu Johnson. The venue is accessible, with level access and automatic doors.
For those who have not registered yet, please send an email to eventadmin@sisofrida.org. It will be at Greenwich Peninsula, on the Jubilee Line, North Greenwich station. We will give full address with registration. We hope to see you there.
Sisters of Frida is carrying out a survey to understand our impacts of our work. This survey will help guide the way we operate. It will also give us an insight into the needs of disabled women & non-binary people. With this, we hope to get a better idea of our demographics, your interests and needs, to help improve the way we work.
