The first Sisters of Frida meeting after the lockdown on Saturday 23rd Sept, 1pm. We’re afraid there’s limit of only 20 places but we will have 3 meetings more. It will be at Greenwich ( Jubilee line) for the first. There is a Changing Places toilet nearby. It is at an Italian restaurant, basically pizza, penne and lasagna. There are vegetarian and vegan choices but we will go elsewhere if you need gluten free (lots of other food stalls nearby). The chef cannot guarantee gluten free when pizza is being made.
We will also have BSL interpreters, please let us know if you need or have other access needs.
If you need BSL interpreter, please let us know ASAP.
We ve been asked to add that women who need to mask can do so.
And please can you take lateral flow test before you come.
The meeting is generally to meet as disabled women, about SOF, and for us to get to know each other. We re not planning any speeches – not for this first get together anyway.
Sisters of Frida is the only disabled women’s collective in the UK. Over the years we’ve connected with many different groups and shifted conversations on intersectionality. Our work has been incremental to both the feminist and disability rights movement in the UK. We are radical, we do cross-movement solidarity work.
Some of our work include: – shifting the narrative on disabled women rights with our work on shadow reports for various UN Committees (CEDAW, CRPD for example) – helping to lobby government policy on domestic violence. – organising peer to peer support events for disabled women & gender non-confirming people- campaigning alongside other disabled-led on numerous issues eg welfare cuts – reporting on the impact on disabled women & gender non-conforming experiences during Covid-19.
We’re at a crucial stage where we need funding to develop our structure.
Can you help us?
By making a one off end of year donation to us, you can help us grow. To do so, just click on the link below:
We’re also open to receiving help in other ways. Perhaps via blogging, social media volunteering or some support. If there’s anything else you’d like to do, we’re open to it. We’re also keen to receive movement building & fundraising advice. Just drop us and email at firstname.lastname@example.org
We will continue to focus on disabled womenâs issues. We wish you a festive season. We hope you stay warm, safe and well wherever you might be. Please do not hesitate to contact us if you wish to contribute – email@example.com
from the SOF team
Art Piece by Barbara Hulme
Long description: A water colour painting of a white woman with her back to view. She is at a corner, she has her hands on each side of the walls. Her hair is in a bun and she has a visible scar on her back. She is wearing white under pants. The walls are greyish. There are leaves on the sides of the image.
Disability, the Heidi Crowther case and the Decriminalisation of Abortion
This article was originally on medium.com by Rachel OâBrien July 2022
All too often, claims of âdisability equalityâ are used to undermine the pro-choice movement. The most recent example in the UK is Heidi Crowterâs court case to make abortion law even more restrictive by removing the disability discrepancies. Ahead of the hearing at the Court of Appeal on the 13th of July, I want to talk about disability, decriminalisation and why this court case is a terrible idea for human rights.
Disability and Decriminalisation
Any claims of equality in restricting abortion access are absolute crap.
Leaving aside for one moment the motivations of the people behind the lawsuit â Iâll get back to those in a minute â they claim that they want to change the 1967 Abortion Act so that it no longer singles out foetuses with impairments and allows a longer period of time in which a termination can be obtained. Currently, section 1(1)d of the UKâs 1967 Abortion Act allows termination of a pregnancy at any time if there is a significant risk of the baby being born seriously disabled. Under other circumstances abortion has to take place during the first 6 months of the pregnancy.
Fine. I agree. There is blatant discrimination in the Act, which feeds into discourse around the lack of value disabled lives have in our society and the idea that itâs better to be dead than disabled.
But restricting the law even further is not the only way to address this discrimination. As a feminist, I believe restricting abortion access is a misguided solution to prejudice against disabled people.
Those who cite equality to argue against the right to terminate a pregnancy are committing a logical error. This argument presumes that a foetus enjoys personhood, a position which is incompatible with UK law. In countries where foetuses are granted personhood and their rights are enshrined in law, abortion access is denied.
Decriminalisation of abortion is the only way to remove the disability discrepancies which exist under the current legislation, in a way that also ensures the human rights of people that can get pregnant.
If the state decriminalised abortion, it would no longer have to provide a list of âacceptableâ reasons for a termination, and all the arbitrary timelines for when a termination can take place could be thrown out the window. The decision as to when and why to terminate a pregnancy should be exclusively down to the person who is pregnant. The only reason that should be needed is that a person no longer wishes to be pregnant.
Of course this doesnât mean that some people wonât choose to terminate if they find out their foetus is likely to have an impairment, but to quote the Special Rapporteur on Disability: ââŚwhile the issue of disability-selective abortion requires greater attention, solutions must not compromise the right of all women, including women with disabilities, to decide whether or not they want to continue with a pregnancy. As interventions against sex-selective abortions have shown, abortion bans and restrictions on the use of technologies are not only detrimental to womenâs rights but also ineffective.â
I would add that itâs none of our business why someone would choose to get a termination, and I am not interested in any proposed solution that interrogates why someone makes a personal, medical decision.
Abortion does not cause the oppression of disabled people. At worst, it is a blunt tool by which already existing oppressive social relations are reproduced. If we actually want to tackle the oppression disabled people face, a more effective way would be to eliminate poverty and ensure good public services for all. In all likelihood, that would mean a lot of foetuses with impairments would become children with impairments because their parents would actually have the means to raise them.
There is also a much broader discussion needed on the way that screening and genetic testing is used and the way information is presented to parents. Technology and medicine are not ethically neutral and both can, and have, been used in reproductive healthcare to advance eugenicist views. While that is a massive article in its own right, it would be a better starting point for a discussion on abortion and disability than proposing further restrictions on terminations. Abortion itself is not the issue, and restrictions on abortion law do nothing to tackle disability discrimination.
The core principles of the disabled peopleâs and pro-choice movements are the same. At the European Network on Independent Livingâs Freedom Drive, one of the most popular chants is âWhat do we want? Choice and control!â.Independent living, one of the pillars of the disabled peopleâs movement, requires us to be able to make decisions about our own day-to-day lives, our bodies and the policies which govern our existence. Bodily autonomy is an essential to fulfilling that principle. No person or state should be making decisions about another personâs body.
The disabled peopleâs movement canât claim to be pro-choice if we only allow reproductive decisions that we think are okay. Being pro-choice means giving individuals the power over their own body even when we donât like the decision they are making.
The Heidi Crowter Case
I have seen multiple supporters of the lawsuit claim that restricting abortion is the only way to get rid of the disability discrepancies in the law. As shown above, this is not true, and does beg the question â why would you not do a google as to your campaigning options before shitting all over the human rights of about half the population? There are long running campaigns to decriminalise abortion in the UK, which have only become more prominent since abortion was decriminalised in Northern Ireland in 2019.
I find it hard to believe that a group of people that have been very effectively campaigning and lobbying for a change to the law, and who have navigated the incredibly bureaucratic and long court system in this country, failed to use a search engine. This brings us back to their motivations.
Iâm in no way accusing everyone who backs this court case of being pro-forced birth â lots of people have been sucked into supporting this by an extremely well put-together campaign and very effective messaging. But not all of its supporters are benevolent.
Letâs have a look at who has supported Heidi Crowterâs CrowdJustice page.
One delightful human being called Jenny commented, âKeep fighting. The reversal of Roe v Wade shows that we can win and save lives.â
Mask off there.
The Christian Poster Company donated ÂŁ140, and religion seems to be very much a theme in the motivations of the people donating. Some choice comments:
âWe need to all pray the Rosary to the Immaculate Heart of Mary and Our Lady of Perpetual Help to intercede to her Son Jesus to stop this discrimination.â
âBest of luck in your appeal. Prayers being offered also. Every live is precious and we are created in the image and likeness of God.â
âWe hold these truths to be self evident: all are endowed by their creator with certain inalienable rights. Among these are LIFE, liberty and the pursuit of happiness âŚ every blessing in your defence of LIFE!â
âEveryone lucky enough to be formed in the womb of his/her Mother has a right too life. Jer ch 1 v 5 Before I formed you in the womb I knew thee, before you were born I set you apartâŚâŚ.â
One of my personal favourites:
âHi Heidi, thanks for your great talk with Cambridge Students for Life! Iâll be praying for you and the upcoming appeal, that Justice would prevail!â
Clearly, not all of the people putting money behind this campaign are purely motivated by a desire to end the oppression of disabled people. Crowter has cornered the market in getting money from every pro-forced birth Christian misogynist out there.
She has also given interviews and talks to some lovely people and, interestingly, been referred to as a âChristian campaignerâ multiple times. This is not something that is advertised on the CrowdJustice page, and does somewhat go against the narrative of the court case being about disability discrimination, rather than an attempt to chip away at womenâs rights in the name of religion.
Heidi Crowter gave a talk to Cambridge Students for Life, an organisation which is very explicit about its goals. Helpfully, Students for Life did a write-up of their event. Crowter started off with a very telling quote from the Bible: âFor you created my inmost being: you knit me together in my motherâs womb. I praise you because I am fearfully and wonderfully made; your works are wonderful.â
In my opinion, giving talks to an anti-choice group puts you firmly on their side in debates about abortion. If youâre being invited as an honoured guest, you must know your actions and opinions are appealing to those who would abolish any and all rights to bodily autonomy for people who can get pregnant. The use of that particular quote hints at the true political motivations of the campaign.
In 2001, Conrathe helped a client take a pregnant woman to court to try and stop her having an abortion in the name of fatherâs rights. After the case failed, he took her to court again to demand the father be allowed to bury the foetal remains. Not only did these actions attempt to undermine a womanâs right to bodily autonomy, they dragged the process out.
Conrathe is a former director of both the Christian Charismatic UnitedLife church and Premier Christian Media Trust, and has built his legal career on representing bigots who tried to undermine the human rights of women and LGBT people. This is not a guy you accidentally hire as a solicitor and this is not someone you should ask to represent you if your aim is equality.
Crowterâs claim should be seen in the context of legislative actions to dismantle, step by step, the rights of marginalised people to their own bodily autonomy and to make decisions about their own lives. That has been the method of choice for forced birthers to try and restrict, and ultimately end, abortion access in the UK.
The Crowter lawsuit is far from the first time someone has used claims of disability equality to try and force changes to the Abortion Act â Lord Shinkwin proposed a private members bill to that effect in the Lords in 2016 and the DUP tried to propose a similar bill in 2021 at Stormont in response to the decriminalisation of abortion in the North of Ireland. Letâs assume for a minute that neither of the proposers of these bills had any ulterior motivations â if either of these bills had passed they would have had devastating effects on abortion access far beyond just removing the disability discrepancies.
Not going to lie, this oneâs a biggie and this is not one where there are easy answers.
But I do know that a campaign which seeks to limit the rights of women is no route for the liberation of disabled people. Aside from the very obvious fact that there are disabled people who can get pregnant, the struggles for bodily autonomy and the right to live independently and on our own terms are struggles which both groups experience, and which necessarily bind our causes together.
In the short term, the disabled peopleâs movement needs to stop indulging the likes of Heidi Crowter. Just because something is led by a disabled person does not mean it is in the interests of disabled people, and frankly it is both patronising and the worst kind of identity politics to assume that, just because a disabled person is campaigning on an issue, they have a good take on it. There should be no place in the disabled peopleâs movement for the pro-forced birth evangelical misogynists who are supporting Crowterâs claim. They should be cast off and disavowed for what they are â pro-forced birthers using âdisability equalityâ as a pretext to destroy abortion access in the UK.
Longer term, there needs to be greater communication between the pro-choice and disabled peopleâs movements. There will be a lot of difficult conversations needed to confront the traps both movements have fallen into with regards to eugenicist and pro-forced birth rhetoric. It will require good faith on both sides and a willingness to admit fault. This needs to happen if we are to move forward and stand in solidarity with each other to ensure everyone is able to access their human rights.
Red Doesnât Mean Green, Stop Doesnât Mean Go
Content Note: Invasive medical procedure, consent not respected, medical trauma
Recently, I was in hospital. It went badly. Here is the complaint I wrote a week later.
âTo whom it may concern
I came to hospital on Sunday [date] with urinary retention, and I need to make a complaint about the conduct of one of the people who treated me. Please note that all other staff I met were wonderful, respectful, caring, and took the time to listen to what I needed.
It was difficult to put a catheter in, and after many unsuccessful attempts in A&E, I was moved to the surgical assessment ward.
There I met a surgeon, and at some point after midnight, he attempted to place a catheter.
As soon as I met him, I was nervous. He tried to speak to my mum about what was happening,
ignoring me completely. She and my PA directed him to speak to me, and it took a few very awkward
moments before he walked to where I could see him and I could speak to him about what was happening to me.
Later, when he returned to place the catheter, my mum had gone home, and my PA was staying with me.
After a number of attempts to locate my urethra (by repeatedly placing his finger in my vagina and feeling around) and place a catheter, which I found painful and distressing, I said I needed to take a break. I asked a question, as information about whatâs happening calms me down and keeps me calmer. He answered that he didnât know, and began to continue, placing his finger back in my vagina. I stated again that no, I need to take a break, and he stopped until I was ready.
Later, the catheter was placed after several attempts by a urologist, who followed the same procedure but was much more gentle, spoke directly to me without being prompted to do so, and allowed me to take a break when needed until I said I was ready to continue.
A few days later, I was still very sore, and on Friday, I still could not place any fabric from my pyjama top on my lower belly. I was seen by a GP who agreed that the pain was probably caused by the process of getting the catheter in, and prescribed a painkiller.
Iâm still very shook up by these events, and am terrified by the idea that I may need another catheter in future, and feel very nervous whenever any health and social care professional examines or cleans around the catheter.
Please could you feedback that in future, the surgeon needs to:
– speak to the patient first, not the person with them, unless directed otherwise, irrespective of whether the patient is a visibly disabled person
– be aware of the level of pain a procedure may be causing and the risk of damage/bruising, and the need to be as gentle as reasonably possible
– ask for consent every time a medical procedure is started or restarted, particularly if that process is invasive, painful, distressing, and/or involves a vagina.
I send this in the hope that this will mean that no one has to experience the same moments of fear, shock, panic and horror as I did, and the aftermath which follows.
By an Anonymous Author
Can Deaf and disabled peopleâs organisations help shape health and care services in the UK?
To ensure that disabled people receive the appropriate health and care services they require, trust needs to be rebuilt between disabled people and health care providers. To do this, health and care services must constructively engage with disabled people at the planning, delivery and review stages of care. This will ensure that services meet the needs of those who use them. Such engagement can be more effective and more powerful if Deaf and disabled peopleâs organisations (DDPOs), NHS leaders and care providers work collaboratively on the delivery of services
DDPOs are primarily democratic and disabled-led. They are significant in ensuring that health and care services address disabled peopleâs concerns and meet their needs. They operate in consultation with disabled people to shape services and often provide peer support and necessary advocacy. For example, when the Joint Committee on Vaccination and Immunisation failed to prioritise disabled people for vaccines, DDPOs lobbied key care and political stakeholders to ensure that disabled people who were vulnerable to Covid-19 were added to the vaccine priority list.
When disabled people report delays in receiving localised services or encounter barriers to having their health concerns addressed, DDPOs step in to ensure that disabled people receive the right services. This happens both in an advocacy capacity, and by providing services such as counselling, acupuncture and physiotherapy. The ability to grasp the complex needs of different impairments and provide a range of support comes from the historic peer-led nature of DDPOs. This uniquely comprehensive view on disability is key to ensuring that health and care systems work for disabled people.
The needs of the disabled community are not homogeneous â factors such as race, class, sexuality, gender and levels (and types) of impairments have an impact on peopleâs experiences of health and care. While decision-makers and providers recognise the impacts of health inequalities and intersectional ableism, solutions to tackling them often fall short. In contrast, DDPOs such as the Sisters of Frida and Stay Safe East not only advocate for intersectional discrimination to be addressed, they also foster community spaces where different disabled women meet to share their experiences of health inequalities. This sharing of experience between disabled people is a point where key solutions can be generated. Decision-makers and providers can embrace the wealth of knowledge and solutions that DDPOs and disabled people have on tackling health inequalities. DDPOsâ historical expertise on disabled peopleâs needs will provide crucial insight into improving health care for all.
Further, DDPOs can provide useful guidance to health and care providers on delivering services that are attuned to different disabled peopleâs needs. It is imperative for health and care services to be able to cater to different types of impairments, for example, physical disabilities, neurodivergence, chronic illness, etc. To formulate this, DDPOs are valuable allies to providers and can share know-how on the mechanisms of crafting accessible services that meet different access needs. Collaboration will provide insight into different care considerations and expand the work of providers in health and care sectors. This can result in gaining an in-depth understanding of the lived experiences of those with various disabilities thus improving health care services in the long term.
As many disabled people continue to struggle through continuing waves of Covid-19, it is crucial that DDPOs, disabled people and health and care services work in partnership to ensure fair and accessible health and care. Health and care organisations need to listen to and engage with disabled people at every step and ensure that listening to the voices of disabled people is not tokenistic, but leads to real change. This will require financial investment for research and consultation activities, and the time and skills of staff. But above all it will require openness and willingness to engage with and value all voices equally. The advantages of working with DDPOs and disabled people are clear but are health and care providers ready to listen and act to build bridges towards equitable partnership?
Written by Manishta Sunnia, researcher for SOF
SoF banner at The Peopleâs Museum, Manchester
Photo of the banner at the People’s Museum in Manchester by Katie Goldfinch
Image Description SOF banner hanging from wooden pole. Multi colours back ground light purple and dark purple. Visible a bird, leaves, flowers, 2 wheels, feathers. Text on banner – ‘Sisters of Frida Hear Our Voices’
Recommended watching over the festive holidays: Biscuitland
Wonderful video from our good friend Jess Thom.
âJess’s Tourette’s means her life is full of biscuits, cats and Alan Hansen. Worlds collide at home and work as a visit from a social worker threatens to ruin her day. Comedy Blap starring Jess Thom.â
e zine “We are Sisters of Frida” (2)
This was published December 2021.
Back at the end of September, we held an international disabled sisters roundtable with some amazing speakers – Virginia Ossana; Carmen Yau; Mali Hermans; Rachel OâBrien; and Eleanor Lisney.
The event was recorded and now available on YouTube, and is also embedded below!
P.A.s and Consent
âThere was an incident. I’ve had to end someone’s contract, which was awful. For confidentiality, I can’t tell you the details.â
That’s what I’ve been saying for days, to anyone close enough to know both people involved. This is what really happened.
I hired a PA I shouldn’t have. I saw red flags at interview, and I doubted myself. I’m aware I’m not a trusting person, and that my instincts can be wrong, and so I chose to give someone the benefit of the doubt.
Fast forward 6 months, and I’m crying and shaking behind my laptop, trying not to make a sound, desperately asking friends what to do.
All because the PA lay their arm on my breast when washing my face. This doesn’t sound like a lot, and I spent a long time telling myself to stop being âsillyâ, it’s nothing.
The reason I felt like this was because it wasn’t nothing. It wasn’t the first time, or the 20th time. It wasn’t something that could be avoided by careful explaining, because I’d done that. It wasn’t because the person didn’t know that you need to be respectful around other peopleâs bodies, and in particular the 3 Bs: Boobs, Bums, and Bits. I’d explained that, awkwardly but properly.
No, I was shaking and crying because non-consensual touching is icky.
The more it happens, the more icky it is, and if it’s any of the 3 Bs, it’s extra ick. I don’t think anyone reading this would disagree with this.
Though the PA did. âI didn’t mean toâ; âI don’t know how to do thatâ; âI forgotâ. The first several dozen times, I listened to that, and gave her another chance, and another, another. And each time it felt more ick, until just the sound of the PA’s voice made me start to feel panic.
Luckily, I have good friends, who were able to advise me and seek further advice on my behalf. They told me I didn’t have to go through that indefinitely. They told me it was OK to trust my judgement, and they would support me regardless of what decision I would make. They didn’t downplay it or ask unnecessary questions. They gave me the facts, and a bucket of empathy, and made sure I took care of myself and took that as a priority. It was gross misconduct, which means the PA has been fired. I’m safe now.
Why? Why did you do this? I kept wondering. Then someone with a similar experience asked me if they were consciously or unconsciously getting something out of it. I remembered the smile on the PAâs face when being too hands-on, and the movements of their touch. Yes, they enjoyed it. I can’t say exactly why or how, but they were getting joy out of something that made me feel uncomfortable, and continued to do this after being told many times that it wasn’t alright to do this. Icky.
I’m writing this because I hope it’ll be useful to someone else. The more trusted friends I spoke with, the more it became obvious that I was not alone.
To prove this, I asked SoF to put up a Twitter poll. The results speak for themselves. This happens. A lot more than we’re willing to talk about, and a lot more than we deserve.
I’m not upset and scared anymore. I’m angry. Angry at the PA for behaving that way. Angry that my friends have also had to deal with similar experiences, and much worse. Angry at myself for not acting faster. Angry at being angry. Angry at the silence, which needs to be shattered. Angry that there are no guides or support resources to be easily found.
This is going to change.
Iâm part of a number of communities, groups in which I gain support where we have solidarity with each other because we share common issues. Those communities exist because of need very often because our needs are not met or recognised by society in general and we experience discrimination. Strangely, I have often experienced invisibility within two of my core communities while also failing to be recognised as Queer or disabled by people outside of those communities.
As a Femme Dyke and a person with so called ‘invisible’ disabilities I often go unrecognised both in my own communities and in larger society. In the Queer world people use the flawed term ‘passing’ to mean being perceived as heterosexual or cis-gendered. As a person with so called invisible disabilities I’m often told how well I look, I âpassâ momentarily. Sometimes invisibility can shield me from verbal attacks or physical danger aimed at queer or disabled people, but invisibility does not change who I am or the impairments I live with. Invisibility can be an erasing and undermining experience.
As a Femme Dyke and a gender queer person, I’ve been told ‘Never in a million years I would have dreamed you were gayâ. Coming from another queer person that statement makes me wonder exactly what it is they expect to see? Meanwhile being invisible as queer in the ‘Straight’ world can be disorientating while providing glimpses of the casual homophobia that people engage in.
Years ago, when civil partnerships became legal for gay people, I remember going into a Newsagents; magazines were laid out on the counter one featuring a picture of Elton Johnâs big GAY wedding. As I paid for my purchases the owner of the store pointed to picture and asked ‘So what do you think of this?’ I assumed he was asking me because I was gay. My girlfriend of that time was standing next to me, the shop keeper nodded to her and said ‘Alright Geezer?’ I was wrong, he had assumed we were a straight couple! Pointing at the gay wedding picture again he said ‘I don’t think it’s right’. I replied icily ‘I’m gay and you are homophobic’.
Gay marriage beyond civil partnership did not become legal for a further nine years in 2013. When I was a teenager, in the country I grew up in it was illegal to be gay. Invisible or not I cannot forget these things.
In terms of chronic illness my invisibility has meant being denied treatment, I’ve been told by gatekeepers that there is ‘nothing wrong with me’ or that I am ‘not sick enough’, bullied and gaslit in a healthcare system where treatment is rationed. After living with Hep C for thirty years which hugely impacted my health I bought generics online, a cure I had not been able to access via the NHS.
Only recently has the publication of new NICE guidelines for ME/CFS removed graded exercise therapy and CBT as direct treatments. Perhaps now we might see a change in the attitudes of health care professionals who for decades implied that the illness was all in our minds. Those attitudes of denial lead me to doubt myself, to push beyond energy limits, to fail and think it was all my fault. Invisibility meant people in positions of power felt free to act as if I was asking for special treatment rather than reasonable adjustments. Iâve been sneered at for asking to use the lift, or asking for quieter environments so I can hear and focus on what is being said. Once when I was in a lot of pain and having difficulty finding a way to sit comfortably, I was stared at and asked if I’d ever had a real job!
My experiences as a Femme Dyke and as a person living with chronic health conditions both illustrate of how not fitting expectations â being invisible – can result in discrimination. As I write I find myself worrying that people will read this and think Iâm making a fuss about nothing! Because invisibility often means being asked what Iâm complaining about.
Fortunately, the other side of the equation is the communities of visibility I’ve found, those who share similar experiences to mine. That amazing feeling of recognition of not needing to explain feeling affirmed and as if other people really ‘get’ me. Communities of shared experience have nourished me, helped me to recognise my struggles as political and social issues. Helped me to learn skills, to value who I am, to celebrate and have fun together. The recognition and support of community has helped give me strength to fight harder in the outside world. To speak up against sexism, homophobia, transphobia, ableism, to advocate for my own care, to believe in my own voice and rights!
Finally, my complex experience as an ‘Invisible’ has given me perspective to be able to question assumptions, to think about what is recognised and validated. To consider community beyond visible categories. To feel sure that just as I’ve experienced discrimination and exclusion due to things that others don’t recognise, there must be things I too am not aware of. To ask myself what listening and patience I can practice to learn about others visible and invisible lives, and in doing so make society a richer and more accessible space.
Jet MoonÂ is a multi-disciplinary artist who writes, performs and collaborates on fierce work for radical social change, creating intimate spaces of sharing, visibility and resistance.Â They are currently assembling an Artists Book from materials gathered as part of âResilient and Resistingâ stories from people at the intersection of queerness, kink, disability, sex work and survivorship. You can find out more at theÂ Resilient and Resisting website.
Abortion is a Disability Rights Issue
Maybe that instinct is perverse, but I think of it as asking for
a world in which a woman who doesnât
have children is worth as much as a woman who does. 
I was born in the early `80s, while the World was changing its course, but it feels like life was easier, even though times were harder. You might say that life is always easier when you are a child, which is true, but disability changes the perspective. Being born with a genetic, congenital illness made me more attentive to the surrounding world since I was a kid. I was aware of my otherness, as I was taken from one specialist to another, searching for the answers about my condition. When kids were going to school, I was home-schooled. Rehabilitation has always been more important to my family, so everything had to be subordinated to this. Being surrounded by specialists, therapists and other patients, mostly adults, made me mature quicker. I was happy by myself, playing alone or with surrounding adults.
Growing up, I wasnât much aware of my body changing, maturing. I was transforming into a teenager, my shapes were getting rounder. I still felt like my body wasnât really connected to my mind, to my self. It wasnât my identity. It was a body, that was handled by others â it was transferred, moved, turned, dressed, etc. Even during medical procedures, which required undressing, I wasnât abashed. Like my body wasnât truly mine. It was just an object my self was attached to, probably by accident. Nowadays, Iâm more attached to my body, though itâs not a fixed connection and itâs usually connected to an erotic experience. Still, itâs my body and I decide how it should be treated.
I exactly remember the moment, when Iâve heard the news about the decision  of the Constitutional Tribunal of Poland. It was 22nd October of 2020 and I donât think Iâve ever been so angry and disappointed in my life. I was angry because women were stripped of their laws. I was disappointed by the government, by the country. Iâve never been a supporter of the current government, but I hoped they have some decency left. Apparently, I was wrong.
Women all over the country went ballistic. It didnât matter if they had a disability or not. That abortion ban has moved everyone. As a woman with a disability myself, I was shocked that anyone in their right mind can think that giving birth to a child with fatal defects is humane. I have never thought about having a child. I need a lot of help in my daily life, so adding a child to this equation would be too much. Adding a child to this world, where everything is falling apart, would be extremely selfish, too. My first reaction to the abortion law was a short text Iâve posted on my Facebook wall. I didnât expect it will cause a reaction it did. My general point was that we, as women, need to have a choice. We are not empty vessels, which can carry any kind of foetus. We are human beings who can feel pain and emotions. Iâve also added that disfigured cluster of tissue is not a child, itâs just an alien growth in a womanâs body. What caused the greatest outrage, was a statement that I wouldnât be surprised or angry if my mother had aborted me if she knew that Iâll be born with a genetic condition. At that time, she would be able to abort the pregnancy, even though we consider the `80s times of oppressive regime. How do we call the present government then? Not a democracy for sure.
Women with disabilities are treated as asexual beings. We have difficulty accessing medical care, especially gynaecological care. Itâs not only about architectural inaccessibility, but also lack of willingness from the medical team. How can a woman with a disability have sex or be pregnant? Thatâs not how it should be. A lot of women are also too embarrassed to visit a doctor, considering they will need someone to help them before, during and after the medical exam. After all, our intimate parts and sexual life are the most private thing. Not being able to get regular exams is an act of violence. Not many people realise how harmful it is to neglect oneâs health.
After a year of women fighting constantly with the government and pro-life activists, we get a possibility of new oppression. Proposed changes criminalise abortion and threaten both women and medical team with murder charges . What kind of absurdity is this?
Not every woman wants to be a mother. Pushing women to become mothers, no matter the circumstances is a violence of the worst kind. No one will care about the actual child, which was born with an illness, birth defect or disability. It doesnât matter its mother will be going through hell, without institutional support. Polish government cares more about the foetus, wasted sperm and eggs than a real human being. Woman with a disability can also give birth to a sick child. What if she didnât want it? A women with a disability can be raped, taken advantage of, can be left alone. Pregnancy is not a walk in the park, it can be dangerous, in can be lethal. Does anyone care? No.
Violence and oppression have many faces. Being born as a woman with a disability puts you lower than others in society. Such a person is being oppressed right from the start. You have to fight your way through everything and prove yourself better than others. Poland has nothing to offer to you. You can go rot somewhere in a corner, because you were worth more as an unwanted, defective foetus than you are now, as an educated, tax-paying adult with a disability. We, women, wonât stop our fight until this situation will turn around and actual human being will be worth more than a ball of random cells. I hope this will happen one day and Iâll be still around to see it.
Patrycja Polczyk is a social anthropologist, philosopher, researcher, woman with disability, and feminist. Patrycja is a published author of scholar papers and articles in mainstream media, with Disability Studies and Autoetnography as her main research interests. Her experience comes from studying, taking part in international Summer Schools and research projects. She is currently working in customer care, but trying to find time for personal passions – researching, traveling, reading and writing old-school paper letters.
On Assisted Dying
TLDR:Â Assisted Dying would put women, disabled women, and other marginalised groups at risk. We can do so much better, and deserve better.
In May 2021, Baroness Meacher proposed a bill that legalised assisting someone to end their life. As a feminist, and a disabled person, I oppose this.
As the law stands at the moment, doctors can’t kill people. They’d lose their right to practice medicine, and be tried through the criminal justice system. The Assisted Dying bill removes this, and creates a specific set of circumstances where doctors can take a life, if that person feels they no longer want to live.
Outside of these specific circumstances, a person who expressed that feeling to a medical professional would be offered access to appropriate mental health support. They would be listened to, and the aim would be to create a situation that allowed the person to feel that they can live the time that they can.
Some reading the above might snigger at my apparently rose-tinted view of how people are supported. Yes, I know that mental health services are under-funded and somewhat patchy in availability and quality. This on its own is an argument against Assisted Dying – we’re already failing some people who need mental health support, so offering someone that option after perhaps years of lack of access to appropriate mental health services is not kindness, but further negligence.
What are those specific circumstances described in the bill? At the moment, the person asking for assistance to die must have a terminal illness with a life expectancy of less than 6 months and must have the capacity to make that decision.
But who, in reality, would this impact?
Workers and family members
I’ve read arguments in favour of AD/AS which state that it would reduce the workload on women – female nurses, care workers, and family members who are more likely to be supporting the person with their needs, everything from fetching a glass of water to giving pain meds to organising finances.
In reality, legalising AD will not change the lives of these women, and to say that it will is to ignore what is needed.
Liveable wages and sick pay, access to training opportunities, and local solutions to the day-to-day issues faced in work are a must. Staff and families watching a loved one experience pain without access to a pain specialist will be drained by supporting someone through this situation, but the situation can be changed. Taking people’s pain seriously and making sure that availability of medication and discussion of options is smooth and consistent will change the situation.
This is just one factor we can improve by looking at what the problem is and ending it. The personâs life is not the problem.
Women and other marginalised groups, including disabled people
In places where AD is already legal, many factors interplay into what kind of treatment and services, and wider social experience, a person has access to, and what decision they will make.
A consistent factor in opting for AD is isolation. The presence of a high quality support network which does not melt away when needed is vital. (Maytal & Stern, 2006).
Unfortunately, consistent support is not automatically on tap, and women and other marginalised groups are more at risk of isolation.
A 2009 study looking at the rates of divorce for people diagnosed with MS or a brain tumour found that women were more likely to become divorced after diagnosis than men: six times more likely (Glantz et al., 2009).
The evaporation of support from family and friends is not solved by AD legislation. Making sure that the person has access to technology to keep in contact, along with access to practical and psychological support for both the person and their support network, can keep some ties from fraying. Employers can make time available through compassionate leave, or changes to working hours. The wider support network can assist with childcare, picking up essentials, and household maintenance. We can make space for people to be there.
More widely, groups that are already at higher risk of isolation need the barriers to building a reliable support network to be removed. -isms, -phobias, and hate have got to go. Respect, listening, allyship and change need to become âthe normâ.
We can choose to say âThere’s nothing more we can doâ. But that’s a lie, and we deserve better.
Fleur Perry is a disabled campaigner and law student with focuses including accessible housing, independent living, and Human Rights. She is interested in representations of disability in media, and disability data as a tool for recording and creating change.
‘Disability, Gender,Â and The EnvironmentâÂ onÂ 24 March 2022 ,Â 6pm GMT.Â
Sisters of Frida and the National Council of Women of Great Britain are delighted to invite you to an informal discussion titled ‘Disability, Gender, and The Environmentâ on 24 March 2022 at 6pm GMT. We will have BSL interpretation and captioning at the live event.
Please sign up via Eventbrite here as we would love to stay in touch. Event details and registration can be found at this link.
Deaf and Disabled women need to be at the table discussing important issues, and the environment encapsulates several areas which deserve significant attention.
Please get in touch if you have any further questions, or have difficulty with accessing the event. Contact email is firstname.lastname@example.org.
Khairani is a Minang-Javanese writer and artist from Jakarta, whose work has been presented widely internationally, and centres disability justice as anti colonial praxis. Among her honours, she has been Modern Poetry in Translation‘s Inaugural Poet-in-Residence, a UNFPA Indonesian Young Leader Driving Social Change, and Associate Artist at the National Centre for Writing (UK). Okka’s books include Indigenous Species (Tilted Axis) and Stairs and Whispers: D/deaf and Disabled Poets Write Back (as co-editor, Nine Arches). Her latest book is Ultimatum Orangutan (Nine Arches), shortlisted for the Barbellion Prize. A frequent public speaker, Okka’s most recent talk was on eco ableism, for Women of the World Festival 2022 at Royal Festival Hall.
Asha is former Professor of Political Science and Womenâs Studies at Utkal University India. She is a recent Member Board UN Womenâs Peace and Humanitarian Fund; Member Board Women Enabled International (USA). She is the founder of SMRC a disability organisation and Women with Disabilities India Network. She has worked with CEDAW and UNCRPD Committee on women with disabilities in India.
Her recent books are
2021 Engendering Climate Change Learnings from South Asia
2020 Asha Hans Disability, gender, and the trajectories of power (Japanese edition) by Asha Hans,
Forthcoming 2022 Forthcoming Disability and Climate Change
Rhine is an artist, independent curator and researcher with a background in filmmaking. They hold an MA Fine Art degree (Sculpture) from the Royal College of Art, for which they were awarded the highly-regarded Abraaj-RCA Innovation Scholarship. Rhine has curated and exhibited their artwork internationally especially in Europe and Asia. They have been invited to take part in several international art residencies and programmes most recently as part of the Australia Arts Councilâs Future Leaders Programme, Office of Contemporary Art (OCA) Norwayâs International Visitors Programme and Tokyo Arts and Space (TOKAS) research residency in Japan. They have been doing extensive field research and mapping of art collectives, alternative spaces and community-based projects across the globe. In building on this work, they have been looking at a myriad of possibilities of working with communities through art practice in driving societal change and highlighting marginalised voices.
Harrie is a researcher in Healthy Active Cities at the University of Salford and has just submitted her PhD in human geography at the University of Manchester.Â Harrieâs research and personal interests focus upon sustainability and inclusive active travel and ensuring that the needs of disabled people are centralised within environmentalism. Harrie is a disabled cyclist and (along with her dog Frida) uses social media to demonstrate how brilliant and inclusive cycling can be, as well as highlighting the specific barriers that disabled cyclists face in their everyday travels. Harrie has recently been recognised as one of the Shaw Trustâs Disability Power 100 for her work and activism.
Carmen Yau (Chair) is currently a Lecturer in Social Work at the University of Greenwich. As a multi-award-winning Disability x Gender advocate in Asia, Carmen is dedicated to enhancing equality and inclusion for people with disabilities and intersectional women. She touches a range of topics from accessibility and universal design, sexuality and LGBTQ, interpersonal violence, physical and mental health.
As a social work practitioner, Carmen is interested in narrative practice and digital storytelling. She commits to bridge social work theories and practice to the digital era. She explores potential social work practice in the information communication technology context.
Videos: Impact of Covid19 on independent living on disabled women
Recording: Disabled womenâs perspectives on Independent Living during the pandemic
The âDisabled Womenâs Perspectives on Independent Living During the Pandemicâ report provides an insight into the experiences of Disabled women during the Covid-19 pandemic. It introduces the ways in which policies pertaining to managing the pandemic by the government, local authorities and other bodies have affected Disabled womenâs ability to live independently. Our report provides Disabled women’s perspectives on a number of issues, such as: financial struggle, experiences of ableism in the employment sector, issues with local authorities and the social care system, getting the appropriate healthcare, struggles in accessing food and other household supplies, and importantly a stark deterioration in mental health.
These issues are a culmination of longstanding government policies which have been detrimental to Disabled womenâs lives from 2008 to now. For over a decade, we have witnessed the dismantling of services in the NHS and a reduction in local authority and social security provisions that have left Disabled people struggling, even prior to the pandemic. It further led to Disabled women being subjected to having our rights to independent living and dignity of life eroded. This was exacerbated during the pandemic and we received little to no support from services run by the NHS, local authorities and social security. The lack of information on basic health matters such as shielding and vaccination have caused a great deal of confusion and stress. Notwithstanding the eugenicist deaths of countless of Disabled people and people of colour, it is our view that our struggle and destitution could have been avoided.Â Â
Our briefing âThe Impact of COVID 19 on Disabled Women from Sisters of Fridaâ illustrates that most Disabled women are already on low income. We are more likely to provide domestic care, less likely to be employed, and are less financially independent. We also know that women do not all have the same life experiences and this needs to be reflected in policy making. For example, Disabled women of colour are disproportionately disadvantaged due to racism, disablism and sexism. Disabled lesbians face social exclusion from the LGBTQIA+ community and disability rights groups. While some data exists on some matters affecting Disabled women such as unemployment, intersecting identities such as race, class, sexuality and gender diversity are not taken into account. Therefore, when considering policy on disability issues, it is important that different Disabled womenâs experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.Â
Sisters of Fridaâs Guide to Accessible Online communication – a Toolkit
Disabled people have equal rights to participate fully in all aspects of life. However, we are often obstructed by lack of access, ignorance and poor attitudes. This isnât simply an inconvenience for disabled people, it can be a matter of life or death.
Lack of access prevents us from having control over our lives and is a stark reminder to disabled people that our rights and our value as human beings can be so easily disregarded.
Accessible and inclusive environments for disabled people create a better experience for everyone. However, accessibility is rarely made standard unless non-disabled people recognise that it benefits them too â for example, dropped kerbs and step-free access that improves access for parents with prams, and the recent dramatic increase in subtitled videos online.
If disabled people are not expected and not thought about from the start, then the resulting design or format will exclude people who may wish to take part and have a right to do so.
Throughout the COVID 19 pandemic, disabled and non-disabled people alike, have increased their online communications, through a range of platforms. Accessible information and inclusive communication is important for everyone but it is especially vital for our independent living. It also makes it possible for us to chat, campaign and communicate with our peers, friends, family and colleagues, nationally and internationally.
This document provides information on disabled peopleâs rights and the action you can take to create accessible and inclusive information and events online. This is not an exhaustive guide but we have tried to add resources from around the world. There are many online platforms for events and meetings and we have not covered all these but reference some throughout.
In this toolkit, we added the importance of realising our rights as well as following the Social Model of Disability with the accessibility aspects. We hope it will be useful and do drop us a line if other information or tips can be added at email@example.com.
Coming out of the lift or elevator, turn left towards Nero at the back of the station
turn left towards the back of the station
towards direction of the 02
turn right after Tescos express
follow the road
go past the Pilot pub
turn left at the nursery
coss the bridge and the GYC is on the left.
WOW Festival Sisters of Frida Panel: Power & Protest: Art, Activism and Disability Sunday 11th March, 11.30am â 12.30pm
Power & Protest: Art, Activism and Disability
Blue Bar, Level 4, Royal Festival Hall Sunday 11th March 11.30am â 12.30pm
From leadership on human rights to artwork informed by the politics of disability, disabled women are at the forefront of global grassroots activism. Come hear why any campaign for gender equality must include disabled womenâs voices.
Key note speaker – Nidhi Goyal – Comedian and activist working on diability and gender rights. Nidhi is the founder and director of âRising Flameâ a Mumbai based NGO working for disabled women and youth and is also the Sexuality and Disability Program Director at Mumbai-based non-profit Point of View. Appointed to the prestigious civil society advisory group of UN womenâs Executive Director, she sits on the advisory board of âVoiceâ and on the board of AWID (Assoc. for Womenâs Rights in Development).
Michelle Baharier is chairing this panel .
Alumni/Fellow of the Slade School of Fine Art and winner of the Julian Sullivan award, graduate of the School of Social Entrepreneurs and the University of the Arts.
She is a practicing visual/ performance Artist working with communities to make collective art works, exhibitions, public pieces and performance.
Nabihah Islam is a published poet and has worked alongside various theatres. Her short play, ‘Home is where the heart is‘ was performed at Theatre Deli and she recently brought the British Council’s Hijabi Monologues to the Bush Theatre. She is a British Council Fellow and worked alongside the Council of Europe as a human rights activist addressing gender violence in South Asian communities and advocating for gender rights.Â She co-founded two development organisations, both are recognised by the British Council as emerging organisations. Nabihah is completing her Masters in Creative Writing at Brasenose College, Oxford.
Lucy Sheenis an actor, published writer, transracial adoptee and advocate for British East Asian artists and adoptee rights. Her play Under A Blood Red Moon was recently one of eight plays written by British East Asian playwrights to have been published by Oberon Books and the first anthology ever to be published in the UK of British East Asian Playwrights.
In 2015 she was one for four BAME writer|performers who presented work created under the RePlay bursary who performed an extract of about 20mins as part of Poetry International 2015.
Jess Thom is a writer, performer and activist who co-founded Touretteshero in 2010 as a creative response to her experiences of life with Tourettes Syndrome. She has performed nationally and internationally, written a book, Welcome to Biscuit Land, and worked with museums, galleries and theatres to host large scale events for disabled and non-disabled children and young people