Sisters of Frida CIC is an experimental collective of disabled women and gender-diverse people. 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 (cis, trans and non-binary inclusive). 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 and gender-diverse people. The barriers and multiple discrimination have not changed, we struggle to have our voices heard as disabled women and gender-diverse people in our own rights.
We would like a community, a circle of disabled women and gender-diverse people to discuss, share experiences and explore intersectional possibilities.
On Saturday 12th September, we gathered at Calthorpe Community Garden for the first meeting with our new mentees. It was a good opportunity to meet one another in person, share ideas, and begin thinking together about what the Sisters of Frida mentorship programme could become.
In attendance was Tumu, Eleanor, Svetlana, Niku, Anahita, Grace, Labake, Kavina, Nehemiah and Francesca. We started with introductions, and got to know each other over vegan snacks and drinks.
Eleanor gave a presentation about how Sisters of Frida (SoF) began, introducing the organisation’s founders and its mission. She also talked about some of the events, campaigns and projects that SoF has been involved in over the years. These included a sex and disability event at the University of Leeds in 2014, the Women’s March in 2017, the WOW Festival at London’s Southbank, and work on a CRPD shadow report. Eleanor also spoke about SoF’s documentation of threats to social care during the height of the COVID-19 pandemic, and work with Stay Safe East. For those new to SoF, Eleanor explained some of the key frameworks that inform SoF’s work, including CEDAW (the Convention on the Elimination of All Forms of Discrimination Against Women) and the CRPD (the Convention on the Rights of Persons with Disabilities).
Tumu introduced the mentorship programme and spoke about what mentees can expect from it. We discussed some of the people and organisations that mentees might want to connect with, as well as the importance of creating a programme that can respond to individual interests.
We spoke about allowing the mentorship programme to develop around the interests and ideas of the mentees. For example, Labake spoke about feeling frustrated and angry with London’s transport system and expressed an interest in doing some work around accessible transport in London. We also had the chance to listen to Labake’s amazing music, which is linked in this issue of the e-zine. Kavina talked about disability dance and accessible training, opening up conversations about how dance and movement can become more accessible and inclusive. We also discussed Nehemiah’s artwork relating to endometriosis and the process of exhibiting the work. As a group, we also decided that the mentorship programme could be a space to explore language, terminology and the social model of disability. We spoke a bit about why we use particular terms, where those terms come from, and how language can shape the way disability is understood. These conversations will be an ongoing part of the mentorship programme, giving us an opportunity to think critically about the language we use, and why.
Image description: Kavina from the side, listening, there is a glass door behind with sunlight shining through.Image description: Eleanor, Tumu, Svetlana, Labake and Kavina are around a table with snacks, pens and paper. Tumu and Eleanor are speaking with a PowerPoint presentation behind them, they are both wheelchair users.Image description: Svetlana and Labake at a table listening to someone speaking. There are glass doors behind with sunlight shining through.
Yes, young disabled women can use walking sticks
by Anahita Harding
On Wednesday 5 August, The Times published an article by Kathleen Stock titled Why are young women using walking sticks?
I found the article upsetting because so much of what Stock describes as suspicious or questionable about young women’s use of walking sticks is familiar to me, and brought back difficult memories.
I have been a full-time, non-ambulant wheelchair user for more than twenty years. I cannot walk or stand. Before becoming non-ambulant, I used a walker but mostly a walking stick.
In the 1990s, there was less awareness of disability than there is now. I was a girl rather than a “young woman”, but the attitudes I faced when using my walking stick were similar to those in Stock’s article. I had a walker provided through the NHS, and when I didn’t use that, I used what was technically a hiking stick, bought by my parents from Decathlon. I had several as I grew taller.
Adults repeatedly told me I didn’t need my walking stick. I was told I didn’t need a seat on the bus and should stand. I was told I had more energy than they did because I was young. I was told I could walk up a flight of stairs and didn’t need to use the lift.
They were wrong because I did need my walking stick. When I became tired, I would repeatedly fall over. Other students asked what was wrong with me and with my legs. On one memorable occasion, a supply teacher shouted at me for not walking to the door quickly enough. When I went to pick up my walking stick from the ground, she realised I was disabled and said, “Oh sorry, I didn’t know.”
My walking stick wasn’t an accessory or a prop (as Kathleen Stock suggests is how young women are using their walking sticks), it wasn’t something I used to stand out or look interesting. It just helped me walk and stay upright.
The older I became, the worse my walking became. Yet adults continued to tell me to walk further and that I shouldn’t be tired because I was young. I regularly had plasters on my knees because I repeatedly fell and cut them when I was exhausted. My muscles weren’t strong enough to keep walking, despite older people repeatedly telling me that I could.
Now I cannot walk or stand at all.
This is why Stock’s article matters to me, and to many other young disabled women. She asks why there are apparently so many young women using walking sticks, describes mobility aids as “props”, and suggests that some young people may be influenced by online communities in how they understand their health.
Young disabled women already have experience of having their symptoms questioned or attributed to anxiety; it still happens to me now. Being young didn’t give me an unlimited supply of energy, and being able to walk a certain distance didn’t mean I could safely walk without falling. Being able to walk up stairs on one occasion didn’t mean I didn’t need a lift. Repeatedly falling over wasn’t evidence that I needed to “push through”. It was evidence that I needed support.
One of the most positive things I have seen in the backlash to Stock’s article is young disabled women proudly celebrating their walking sticks, wheelchairs and other mobility aids. That makes me happy. Some things have changed since I was young: disabled people are increasingly able to say publicly, this is my mobility aid, and there is nothing shameful about that.
Instead of writing this article, why not write about why young disabled people struggle to access healthcare and accessible public transport, or why a railway station lift can fail and leave a wheelchair user having to be assisted up the stairs (Kathleen Stock’s problem wasn’t with the lift being broken but the disabled person receiving help up the stairs).
Stock concludes her article writing that some young women need to “ditch the props” and “stand on their own two feet”.
Unfortunately I know what those words can mean, when you are being told that you should walk further, and try harder, when you physically can’t and no-one seems to believe you because you are young. I hope we can move forwards from this article, and provide disabled people with accessibility and respect rather than suspicion.
This is written from my personal experience and perspective, in solidarity with the work of Sisters of Frida.
Accessing cancer screening services: barriers for disabled women and gender diverse people.
by Anahita Harding
For many disabled women and gender-diverse people, accessing cancer screening services can present significant barriers. These barriers can be physical, emotional and related to communication, and they can make what should be a routine appointment much more difficult.In England, the NHS is working to improve cancer screening, but it is still inaccessible for so many disabled women and gender diverse people.
Firstly, trauma can be a significant barrier to cervical screening. People who have experienced sexual abuse, PTSD, or have had previous negative experiences of medical procedures may find cervical screening particularly difficult. This can also affect whether someone feels able to attend. This is why it is important that screening is delivered in a trauma-informed way, with healthcare professionals listening to the individual and giving them control over what happens during the appointment.
Physical accessibility can create barriers even before a screening begins. This could include a lack of step-free access, lifts or accessible toilets, but it can also involve the equipment used during the screening. Examination beds and chairs may not be suitable for every disabled person, and alternative positioning or additional support may be needed. Breast screening can also create physical barriers when someone can’t physically position themselves for a mammography.
Communication is another important part of making screening accessible. People may need information in formats such as Easy Read, large print, BSL or audio, depending on their individual communication needs. Screening services should also make sure that patients understand what will happen during an appointment. Healthcare professionals should explain each stage of the procedure clearly, check understanding, and take concerns about pain, distress or trauma seriously. People should not feel that their fears or experiences are being dismissed.
There can also be additional barriers for trans men and non-binary people. Whether someone is invited for screening can depend on the information recorded on their GP record, meaning that some people may not receive an automatic invitation. This makes clear and respectful communication particularly important. Screening services need to make sure that people understand whether they are eligible for screening and can access it without being made to feel uncomfortable or judged.
There are potential solutions that could make screening more accessible. One example is HPV self-sampling, where an eligible person collects their own vaginal sample using a swab. This could provide an alternative for some people who find clinician-led cervical screening difficult or traumatic, although it does not replace clinician-led screening in every situation.
Healthcare providers also have legal responsibilities to make reasonable adjustments for disabled people. Accessibility should not be something that is only considered once a patient arrives at an appointment. Screening services should ask people what adjustments they need, make those adjustments available, and communicate with patients beforehand wherever possible.
I don’t think accessibility should mean having to repeatedly explain your disability, ask for basic adjustments, or accept an improvised solution once you are already in the examination room. Cancer screening should be something that disabled and gender-diverse people can access with dignity, safety and choice. For me, improving screening isn’t simply about encouraging more people to attend. It is about making sure that when people do attend, the healthcare system is ready and able to meet their needs.
Where is care in what we give to and receive from one another?
Image: Jamie Hale in Quality of Life is Not a Measurable Outcome by Shona Louise Photography
by Jamie Hale
JUN 23, 2026
Content notes for discussion of care fundings and systems and the violence they enact on disabled people
Social care is described in a series of buzzwords: support, enabling independence, person-centred, and yet in practice, it can be anything from that to quite the opposite. I am lucky that most of the social care I have had has been through direct payments. With this model, I can recruit, train, and manage the people who provide my care, rather than receiving them from a care agency or another provider, though there are many challenges with this.
Needing care I didn’t expect to need care growing up, and I didn’t choose to need care. I remember when I started receiving care, I went from: eating one meal every few days (because that was all I could manage) to eating a meal daily, showering every week to showering as I needed, living in, well, a pit, to living somewhere cleaner and more organised
And yet, I felt I was giving up something very fundamental about my life and independence when I allowed someone else into it like that. Care feels like one of the most intimate relationships and simultaneously one of the most bureaucratised relationships one can have.
Systems and care Social care seems to be designed around administrative convenience rather than the needs of the person receiving it. Assessment processes reduce life to a list of tasks. Can you wash? Cook? Dress yourself? It is a list of domains (your breathing, your pain, your mobility, your continence) where they then assign or reduce hours based on those areas. It is built around what the system will fund rather than what you actually need. The person who arrives to provide care may be yet another representative of that system or someone you have been able to arrange for yourself. Regardless, they feel intimately tied to a system that exerts institutional violence on you, one that treats you like your basic needs are too expensive to meet and leaves you feeling subhuman.
Care language There are so many different words that people use to apply to the people who provide them with care. Is someone a care worker, a carer, a support worker, or a personal assistant? The language shifts depending on who is speaking and what they want to emphasise. Care is something done to you, and the word ‘care’ carries a warmth that it frequently doesn’t deliver. For me, the word care speaks to being looked after by somebody, and I am not interested in being looked after. The phrase ‘support worker’ implies a goal of some kind of independence: that they are supporting me in doing things, but that I am the one doing them. I tend to stick to the phrase ‘personal assistant’ because, fundamentally, this person is assisting me in the ways that I need. However, that is often misunderstood by people who assume that a personal assistant refers entirely to an administrative job. I hate the word ‘carer’, though. I hate it partly because I hate receiving something that is called care and yet doesn’t feel caring.
Care and independence The purpose of social care is to make the disabled person – the dependent person – into an independent person, as cheaply as possible and offering as little support as possible. But what if dependence is not a problem? Why should we lose agency, lose authorship, just because we need support in our lives? And why should we be aiming to do things on our own when that is difficult, painful, unsafe, and impossible? This system creates a dependence on it that it claims to treat. It claims to be providing support to make people independent, but by making that support conditional and precarious, and by requiring us to constantly prove incapacity, it instead creates more and more dependence. It becomes paradoxical that the system makes you more dependent the more you need it. The power imbalance of care And care comes with a very complicated set of power imbalances. I might be the employer and therefore hold the power to hire and fire in accordance with insurance and the law, but in the day-to-day, the people who provide my support hold a huge amount of power over my daily life: my body, my home, my routines, and my privacy. They can easily betray my confidence by talking about my care needs to others, or restructure my days simply because people are going about their tasks slightly more slowly than usual. There’s nothing I can do about this. When it is so difficult to recruit, there is no option but to risk making trouble. Fighting is not worth the cost. You have to just accept what’s being done to you. That power imbalance, the knowledge that they could do anything and I would have little recourse, shapes every interaction, even the positive ones. Care, privacy and intimacy Care requires such a high degree of sharing and intimacy. It involves people knowing my body in ways that would usually only be reserved for those I love. Indeed, when I am interviewing new carers, they watch me stark naked in bed having a wash, because I need to know that they are going to be comfortable doing that. All of the rhythms and parts of my life are witnessed by people – and not people I have chosen to be there, or even people who have chosen to be there themselves, but people who are there because they are paid to be. They know all of these details about me and hand them over from one to the next. There is a real loneliness that comes with that intimacy: the fact that I am close in proximity to people and yet not in relationship with them. There could be a huge amount going on in my life, and often is, that they know nothing about. I need that closeness and intimacy because my bodily needs have to be met, but I simultaneously resent it. It is something I want to spare and share only for my loved ones, not something I want to be constantly engaged in with new strangers.
Care can work Care can be good. I work with people who actually see me as a person with a personality, a history, a sense of humour, a job, preferences, and a life that isn’t just my care needs. That helps. It is not just having the practical support; it is also about the way that restores some dignity and ease, the sense that my time and comfort actually matter. However, it is also rare to have that degree of support in place, not least because it is a lot of emotional labour to ask from the person supporting me when they may well be working in a minimum wage job. Good care, I think, is in some ways a form of disability justice – something that we cannot live in a just world without. It is something that should be a standard rather than an exception.
Crisis of care The challenges I have with care are worsened by the current workforce crisis. Care work is often done at minimum wage and under poor, pressured conditions, despite a high degree of responsibility and expectation. It is frequently performed by women from the global majority, and especially migrant women. The pay and conditions the sector offers say a lot about how much we value this work, as well as how we value the people who need it and the people who provide it. Care is feminised, racialised, and undervalued; the more that happens, the more the people being cared for are also devalued. In this model, the people providing care are often failed by the system just as badly as those of us receiving it. Care and mutuality I often talk about care within disability communities and mutual aid as a response to this: finding and making those informal networks, and finding the people who understand how to support you without being told. I greatly value that in disability spaces, but I strongly feel that it cannot and will not substitute for the kinds of formal care and support that people like me require. Ultimately, there is a huge training burden and a high level of responsibility involved. While I would love to live outside transactional relationships of care and inside relational ones, I cannot find the latter when I cannot put the expectations for meeting my needs on anyone. I think I would just like to see care not as a service delivered to me, but a relationship between people with mutual obligations. It should be reliable, respectful, and responsive to both of our needs, funded adequately and valued appropriately, and structured so that the people who are providing the care are themselves properly supported
Ultimately, who is responsible for care? There is a constant political will to make the answer to that: “not us”. Not central government, not the NHS, not local government; only unpaid friends and family. But ultimately, no system takes full responsibility for providing that care. When you look at care, you can hold it up to society as a mirror. What does our social care system reveal? What does society actually believe about disabled lives? That we are too expensive, that we are a waste of resources, and that our needs cannot and should not be met. Actually, it could be different. The system could be different, and our experiences could be different. Just by embedding disabled people into the process, and disabled knowledges about solidarity and community. And by giving it the budget it needs to offer proper care, support, and in(ter)dependence.
Fancy roads that look like a path Somebody was having a laugh- but not me Glass doors and glass floors Yet another building that ignores- the needs of people like me
Sloping steps with no clear edge or a rail. Why do designers fail, to see- me Computers that have a mouse and keys -are not easy – for me And the cafes that put mugs on top of saucers – are not my cup of tea.
As I struggle through the crowd The conversations around me become Increasingly loud- so I flee Bumping into one thing then tripping over Something- that is right in front of me
Mind the gap- too late I’ve gone But there is nothing wrong- with me Dys life is the making of society.
We’re excited to share this wonderful album by one of the participants of our mentorship programme, Labake Sabbath. You can listen to her album Metal Madness online here.
Image description: an album cover with a black thick outline, with religious imagery of crucifixes in green and orange in the centre. Overlaying this it says Metal Madness in red text on a white background, and underneath it says Labake Sabbath in thick black capital letters.
We are now accepting applications for the Sisters of Frida Mentorship Programme.
This two-year programme supports Disabled women and gender-diverse people who are engaged in, or beginning, activism and organising. The programme is rooted in disability justice, intersectional feminism, and collective liberation, offering space for learning, mentorship, and collective action.
Participants will take part in shared learning sessions, practical skills-building, and one-to-one mentorship in the second year, culminating in a final symposium showcasing their work.
Click here for more information and to access the application forms:
Application forms are available in Easy Read, PDF, and Word formats.
Access support
If you have any questions, access needs, or require the application in an alternative format, please contact admin@sisofrida.org. Please also let us know any access needs for the interview process.
Deadline
The deadline for applications is 22 June.
Interviews will be held on Zoom on the evenings of 14 and 15 July, and during the daytime of 18 July.
The programme is collaborative, participant-led, and grounded in solidarity, care, and collective action.
This programme is funded by the City Bridge Foundation.
We’re pleased to share a new resource on accessible venues in London. This report was written as a guidance for accessible venues in London as researched and explored by Sisters of Frida and funded by the Mayor of London.
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).
