Bringing disabled women and gender diverse people together,
mobilising and sharing through lived experiences

Meeting the Mentees at Calthorpe Community Garden

by Anahita Harding

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. Click here for an audio recording of this paragraph

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. Click here for an audio recording of this paragraph

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. Sources Royal College of Nursing, Cervical Screening for Physically Disabled Women and Autistic Women, Clinical Professional Resource, 2024. GOV.UK, Supporting people with learning disabilities to access cervical screening. GOV.UK, Breast screening: reducing inequalities. NHS population screening: information for trans and non-binary people – GOV.UK NHS London SelfScreen Opportunistic HPV Self Sampling Pathway: Professional Guidance for Primary Care. Click here for an audio recording of this paragraph

Crip Care

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. Click here for an audio recording of this paragraph

Dys Life

Right to Thrive Poem

by Kavina Pound

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. Click here for an audio recording of this paragraph

Metal Madness by Labake Sabbath

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. Click here for an audio recording of this paragraph