This was published in December 2022

We are Sisters of Frida

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:

I’m supporting Sisters of Frida.

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 hello@sisofrida.org

Donate to Sisters of Frida

We will continue to focus on disabled women’s 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 – hello@sisofrida.org

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.

Gratitude to Barbara Hulme for this image. Instagram @Barbara.hulme

Disability, the Heidi Crowther case and the Decriminalisation of Abortion

This article was originally on medium.com by Rachel O’Brien July 2022

All too often, claims of “disability equality” are used to undermine the pro-choice movement. The most recent example in the UK is Heidi Crowter’s 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 — I’ll get back to those in a minute — 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 UK’s 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 it’s 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 “acceptable” 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 doesn’t mean that some people won’t choose to terminate if they find out their foetus is likely to have an impairment, but to quote the Special Rapporteur on Disability: “…while 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 women’s rights but also ineffective.”

I would add that it’s 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 people’s and pro-choice movements are the same. At the European Network on Independent Living’s Freedom Drive, one of the most popular chants is “What do we want? Choice and control!”. Independent living, one of the pillars of the disabled people’s 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 person’s body.

The disabled people’s movement can’t 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 don’t 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 — 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.

I’m in no way accusing everyone who backs this court case of being pro-forced birth — 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.

Let’s have a look at who has supported Heidi Crowter’s CrowdJustice page.

One delightful human being called Jenny commented, “Keep fighting. The reversal of Roe v Wade shows that we can win and save lives.”

Mask off there.

The Christian Poster Company donated £140, and religion seems to be very much a theme in the motivations of the people donating. Some choice comments:

“We 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.”

“Best of luck in your appeal. Prayers being offered also. Every live is precious and we are created in the image and likeness of God.”

“We 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 … every blessing in your defence of LIFE!”

“Everyone 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 apart…….”

One of my personal favourites:

“Hi Heidi, thanks for your great talk with Cambridge Students for Life! I’ll be praying for you and the upcoming appeal, that Justice would prevail!”

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 “Christian campaigner” 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 women’s 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: “For you created my inmost being: you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful.”

Spoiler: this quote is a favourite amongst Christian forced birthers, and raises questions as to what Crowter and co’s motivations really are.

In my opinion, giving talks to an anti-choice group puts you firmly on their side in debates about abortion. If you’re 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.

Crowter has herself retweeted multiple tweets from anti-abortion groups such as Both Lives Matter, Unborn Lives Matter and Galway Anti-Abortion Outreach, as well as explicitly anti-abortion messages.

Speaking of people involved in the court case, let’s take a look at Crowter’s solicitor, Paul Conrathe.

Oh boy. This guy is a real winner, and exactly who you don’t want to represent you if you want to maintain the facade of being an equality-based campaign.

His track record includes working on legal actions which were anti-LGBT, anti-trans and anti-abortion.

In 2001, Conrathe helped a client take a pregnant woman to court to try and stop her having an abortion in the name of father’s 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 woman’s right to bodily autonomy, they dragged the process out.

He also acted in the Tavistock v Bell case, as well as other anti-trans cases, which aimed to stop the prescription of puberty blockers to trans children. Had this action been upheld, it would have also had severe implications for abortion rights as it aimed to underminethe Gillick principle — the idea that children under the age of 16 can consent to treatment if they’re believed to have enough intelligence, competence and understanding to fully appreciate what’s involved in their treatment.

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.

Crowter’s 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 — 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. Let’s assume for a minute that neither of the proposers of these bills had any ulterior motivations — if either of these bills had passed they would have had devastating effects on abortion access far beyond just removing the disability discrepancies.

By arguing that a foetus has a right to equality, the advocates of these bills assumed that a foetus enjoys some form of personhood. As Abortion Rights lay out, such a claim would be inconsistent with the fundamental principles of English law, which recognises that personhood is only gained at the moment of birth. In countries where the rights of the ‘unborn child’ are enshrined in law (as was formerly the case in the Republic of Ireland), access abortion is denied. If these bills had been passed, or Crowter’s claim had been upheld, this would have been incredibly damaging to women’s ability to access reproductive healthcare.

So What Next?

Not going to lie, this one’s 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 people’s 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 people’s movement for the pro-forced birth evangelical misogynists who are supporting Crowter’s claim. They should be cast off and disavowed for what they are — pro-forced birthers using “disability equality” as a pretext to destroy abortion access in the UK.

Longer term, there needs to be greater communication between the pro-choice and disabled people’s 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 Doesn’t Mean Green, Stop Doesn’t 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.

“To 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 what’s happening calms me down and keeps me calmer. He answered that he didn’t 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.

I’m 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.

Yours sincerely,

By an Anonymous Author

Can Deaf and disabled people’s organisations help shape health and care services in the UK?

This was first published at The King’s Fund.

Between January and November 2020, six in ten of those who died from Covid-19 were disabled. Disabled people have historically experienced a range of barriers to accessing health care, for example, the lack of suitable transport and inaccessible buildings, and the Covid-19 pandemic brought additional challenges. During the lockdowns, shielding concerns, the inappropriate use of DNRs (‘do not resuscitate’) and the mismanagement of vaccine allocations, did not consider the needs of disabled people. As safety measures have been lifted and waves of Covid infection continue, ongoing concerns for shielders and the inability to access care remain unaddressed. All this has left the disabled population’s trust in the health and social care system at a low point. As safety measures have been lifted and waves of Covid infection continue, ongoing concerns for shielders and the inability to access care remain unaddressed.

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 people’s 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 people’s 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 – factors such as race, class, sexuality, gender and levels (and types) of impairments have an impact on people’s 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. DDPOs’ historical expertise on disabled people’s 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 people’s 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 People’s 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.

“Jess’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.”

This was published in May 2022

Gender, Disability, and the Environment

see transcript for discussion

On 24th March, Sisters of Frida (SOF) and the National Council of Women of Great Britain (NCW) hosted a discussion, titled ‘Gender, Disability, and the Environment’. The panel consisted of Khairani Barokka, Asha Hans, Rhine Bernardino, Harrie Larrington-Spencer, as well as Carmen Yau (who chaired the session).

In line with the 66th Commission on the Status of Women, an annual two-week global conference, SOF and NCW contributed to the priority theme of ‘Achieving gender equality and the empowerment of all women and girls in the context of climate change, environmental and disaster risk reduction policies and programmes’. Drawing on the experiences of disabled activists and researchers from various countries, this event examined crucial environmental issues in relation to disability, including eco-ableism, inclusive sustainability, accessibility and nature, as well as interconnection and disability climate justice. Surprisingly, the intersection between disabled women and the environment is a largely untouched topic of discussion. Yet, during the event, panellists provided clear examples of the significant challenges that the environmental crisis poses to a vast majority of Deaf and disabled women across the world.

Climate change policies, environmental decision-making and contingency plans have often failed to include Deaf and disabled women. With the rising sea levels, flooding and snow melting, disabled women are more likely to face serious consequences as they are likely to experience poverty. For example, disabled women in India who work as farmers are likely to be forced into migration and have their livelihoods taken away as they can no longer provide for their families in climate-affected regions. With increasing pressures to feed families, 70 per cent of food is needed but agriculture is an impossible reality for disabled women in India.

Another challenge is setting up cyclone shelters, creating infrastructures to find them and making sure that they are friendly for disabled people. Climate disasters, such as typhoons in the Philippines, also underline the expected responsibilities of disabled women to carry out domestic duties, including the burden of survival, looking after the family, and dealing with emergency situations which are caused by climate change. In addition, environmental issues place additional pressures on indigenous disabled women, who are disproportionately affected by land ownership and weapon manufacturing.

Transport justice also offers an important aspect which needs to be considered within this debate. Inclusive active travel with different forms of mobility aids and types of sustainable transport, such as cycling, can help to reduce carbon emissions and challenge traditional stereotypes associated with masculinity in the United Kingdom. Disabled people are commonly spoken over in this discussion, overlooking the additional problems that disabled women often encounter related to abuse, and protective measures.

With unexpected climate crisis challenges and issues, disabled people are faced with greater uncertainty. Disabled women, including indigenous sisters, need to be at the table when discussing environmental policy, and consulted in decision-making processes. Deaf and disabled perspectives must be included in the conversation of climate change – we need to be heard in all the invisible spaces that Deaf and disabled women live in. Grass-roots communication with disabled women in local communities and governmental recognition of these perspectives are therefore central to finding more effective, disability-inclusive solutions, and mitigating the current and future environmental challenges. Ultimately, there is no climate justice without disability justice.

Report by Kirstie Stage

We deserve more

It’s been a pretty shitty 2 years and a little bit of pandemic, and so much more. The usual cares of life as a disabled woman did not pause, but were turned up, and our support structures, escape hatches, and pressure release valves were removed.

No amount of home spa kits, emergency chocolate, meditation podcasts, journaling or posters of kittens telling us to hang in there is going to get us out of this. They might get us a brief moment of joy or motivation, and are worth doing for that alone, but that’s not enough. “In case of emergency, eat chocolate” doesn’t work when there’s a new emergency every day, or an ongoing battle to simply survive.

I’m sick of Self-Care. I know, that’s unthinkable, but I’ve said it and I’ll stick by it. I’m sick of being told to “take care” and “hope” and finding nothing better to say to others. In these times, it’s not enough. I need more words and I don’t know what they are. Netflix and a cup of tea and a snack might get me breathing right again, but it’s not enough. We need more than Self-Care – we deserve more than Self-Care.

We are told the idea that in a world that pushes you back with negative attitudes, loving yourself and showing that through acts of self-kindness is the most radical thing you can do. It has it’s uses, but it’s nowhere near the top of the list. Entire industries and billions in profit have been built from the attempts of the rightfully upset to avoid being crushed by the steamroller of life.

Radical Self-Empathy goes a step further, and may offer another level of relief: It’s OK to be sad that more than a thousand people a week are dying from Covid-19 in the UK. It’s OK to be angry about the things that have happened, and are happening, to you and around you. You feel how you feel, and you have a right to own those feelings.

You can take it a step further, and show Radical Empathy to others, and say “That’s shit” and “O fuck” when something bad happens to someone. I find it more comforting than “take care”, but some others may not find mutual swearing in any way an improvement to the situation.

Even when Radical Empathy, whether shown to ourselves or others, is performed to perfection and meant sincerely, it’s not enough. Sometimes I just don’t want to share how I feel, or put the knowledge of something terrible into someone else’s brain (though I know my friends want me to not hold anything back), or to be validated about something I already know to be true. Though sometimes I do. We need more than empathy – we deserve more than empathy.

We are told in a world that ignores your feelings and the feelings of others, taking time to understand and showing empathy is the most radical thing you can do. It has it’s uses, but it’s not a full solution. Entire industries and billions in profit have been built by the urge to show off just how much we care, flowers that die in a week and gift cards made of deforestation; and the need to have difficult conversations and confront reality, from 24/7 news channels to self-help books and tech-giant sponsored Youtube videos of how to unroot discriminatory ideas from your brain, fuelled by the worthwhile desire to not be that asshole who made things worse by denying that people are being crushed by the steamroller of life.

Restorative justice is the next level often recommended to deal with a situation that’s hurt someone. “You could write to them.” “That’s not legal.” “You can get compensation for that.” It’s powerful, and often satisfying. It can protect our futures, and those of the next generation. But it’s hard, and takes more energy and time than may be available, or healthy and sensible to give. It involves a large number of people agreeing to change, the barriers can be huge, and unjust themselves.

In some situations, there is no justice to be had. No matter what is done, no matter who apologises or changes their policy or overhauls the entire structure of what they do, what has been taken can never be returned. Restorative justice cannot restore before. You can’t fix it, not always. You can stop it from happening again, sometimes, but that’s as far as it goes. Justice isn’t enough. It could never be. We need more than justice – we deserve more than justice.

We are told the idea that in an unjust world, fighting for universal justice is the most radical thing you can do. It has its uses, but it’s not a complete solution. Entire industries and billions in profit have been built from the attempt to dismantle the steamrollers of life, but it won’t restore those who were and are being crushed by them.

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

By an Anonymous Author

Straddling Identities

I belong to a few communities, but they do not often link up. It feels like parts of my identity are not visible or ignored by the other parts. This feeling of being an outsider is exacerbated during a crisis like the pandemic, as a disabled woman of colour of East/Southeast Asian heritage. Needing to shield and self-isolate (as a disabled person ) made time to reflect and organise differently. I had started to connect with ESEA Facebook and Instagram groups and started attending events. But not all venues/community centres are wheelchair accessible, and I am saddened by that. As a disabled activist, I frequently call out on such venues because there is legislation against this but I am loathe to do this in my own community spaces. Is this a double standard on my part? I am being excluded by my own community – in a space where I can use my mother tongue.

As I write, it is Disability History Month (DHM) (18 November to 18 December). Most people know of the Black History Month (BHM) but not many know of the DHM, not even disabled people themselves. Due to COVID19 restraints, I did some online interviews of the intersection of being disabled and people of colour, including with disabled people from the ESEA community to mark DHM. There is a theme each year and last year it was on Access, this year it is Hidden Impairments and Disability, Sex and Relationships.

There has been none themed yet on intersectionality and so last year I collaborated with a few disabled friends of colour on online videos on how they perceived themselves with the interlinking identities of being disabled and people of colour. Amongst them were people from the East and Southeast Asian communities. Disabled people are found in every sector of society – we are very diverse with a cross section of impairments: physical, visible, learning disabilities, mobility, vision, hearing, neuro diverse. Some of us have our impairments from birth and some have acquired impairments from accidents, illnesses or they can be age or mental health related. One barrier, among others, we all share is the stigma from being disabled. This stigma is even more pronounced among Black and minoritised communities, we are less likely to self-identify as disabled.

Disaggregated data has been signalled as very important in UN shadow reports such as the CRPD (Convention on the Rights of Persons with Disabilities) and CEDAW (Convention on the Elimination of All Forms of Discrimination against Women) and certainly in the pandemic, to ensure that everyone is included when it comes to strategy and policy decisions. However, data as regards to gender, race, sexual orientation etc – all the protected characteristics are not always recorded. At Sisters of Frida, a Disabled women’s collective, we did a report on Disabled Women’s perspectives and how COVID19 has impacted on their independent:

Our briefing ‘The Impact of COVID 19 on Disabled Women from Sisters of Frida’ 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 women’s experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.

Data on how the pandemic has affected the ESEA community is not easy to extrapolate. There are reports such as on Filipino nurses in the UK. However, as far as I know, there is no data breakdown on ESEA disabled, let alone on how they are affected in the pandemic. We can venture a guess on the disruption of family lives because of lockdown. BIPOC/ BAME older folks and disabled tend to have a higher dependence on family members for care duties. I did a video as part of the Sisters of Frida’s report above in which I spoke about the impact of COVID19 and briefly on ESEA racism. However, I think my friend, James Lee, speaks best on this point of being both from the ESEA community and being disabled during this pandemic. James is a disabled consultant who consults for grant funding organisations. His parents are immigrants from Singapore. He remarked that as a disabled person of colour, he is hugely influenced by his parents who are also both disabled people of colour.

On my question (in my interview with him) as to whether the pandemic and the specifically discrimination and violent attacks on people of East / Southeast Asian origins, affected him or if he had any thoughts on that, he responded:

I think that clearly there was a demonstrable rise in racism and in hate crime incidents against people who were of the Southeast Asian heritage or appear to have a Southeast Asian heritage and that all started with I think some of the unhelpful rhetoric on around the world about how we talk about the virus about where you know people deemed case zero to be as it were where people felt the origins of the virus came from.

A lot of that was driven by some of the unhelpful rhetoric around that … It was frankly racist rhetoric – calling things like the China virus and so forth. … It’s horrendous that that happens, I think that if you are a disabled person of Southeast Asian heritage you feel and you have the danger of feeling an even more acute vulnerability to that, and I hate the word vulnerable, I hate to use, I know we use it so much when we talk about disabled people in the context of COVID but I’m talking about vulnerability in the context of hate crime here.

We know that hate crimes against disabled people are hugely underreported; that they are rarely followed up that they rarely end in any form of judiciary action.

To be both disabled and a person of Southeast Asian heritage, I think puts you at an even greater … it leaves you feeling so much more exposed, so much more targeted and singled out. And it may well be that the people all around me that the thought had never crossed their mind to say anything that was racist or to say anything that was ableist. But there is a level in which we talk about internalized ableism we talk about internalized racism and there is a level to which that you can’t help but have that creep into your psyche a little bit. To the extent where you know – I would go to the shops and I think all right – do I, you know – are people looking at me more?

So I’ve got what I like to think is a relatively thick skin. I’ve been a wheelchair user for a very long time I, you know, don’t bat an eyelid at the occasional lingering glance or the occasional, you know, I almost said longing stare. There the occasional, the occasional lingering glance or like if someone looks at you and you know that they’re thinking something or you project that they’re thinking something slightly unkind as disabled people may do but I think that that combination of factors – the prevailing mood of racism at a time when there was also this huge issue with disability hate crime is just – it’s not a pleasant combination.

Realising the different identities and my own specific heritage, I applied to be one of the directors of the End Violence and Racism Against East and Southeast Asian communities (EVR) and am honoured to be accepted. I hope to work for the identities I belong to with the passion I feel for justice, equity and inclusion for everyone.

– Eleanor Lisney

This article was first published by ESEA Hub.

City of Women London

This collaborative public history project ‘City of Women London’ aimed to redraw and reimagine the classic London Underground map to produce an alternative map, replacing existing station names with the names of remarkable female or non-binary Londoners who have had an impact on the city’s history.

Led by writer Reni Eddo-Lodge and actor Emma Watson, who worked with writer and activist Rebecca Solnit and partnered with Transport for London (TfL), the project – called City of Women – draws from figures in arts, sports, activism, science, media, law, medicine and beyond. The digital version, led by Dr Leah Lovett (UCL Centre for Advanced Spatial Analysis), allows people to learn more about each person and their lives. The online map launches with featured biographies and interviews from contemporary women and non-binary people.

This was published December 2021.

International Roundtable

Back at the end of September, we held an international disabled sisters roundtable with some amazing speakers – Virginia Ossana; Carmen Yau; Mali Hermans; Rachel O’Brien; and Eleanor Lisney.

The event was recorded and now available on YouTube, and is also embedded below!

P.A.s and Consent

“There was an incident. I’ve had to end someone’s contract, which was awful. For confidentiality, I can’t tell you the details.”

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 “silly”, 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 people’s 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. “I didn’t mean to”; “I don’t know how to do that”; “I forgot”. 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 PA’s 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.

Invisible

I’m 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 ‘pass’ 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 gay’. 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 John’s 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. I’ve 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 – being invisible – can result in discrimination. As I write I find myself worrying that people will read this and think I’m making a fuss about nothing! Because invisibility often means being asked what I’m 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.

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 doesn’t

have children is worth as much as a woman who does. [1]

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 wasn’t much aware of my body changing, maturing. I was transforming into a teenager, my shapes were getting rounder. I still felt like my body wasn’t really connected to my mind, to my self. It wasn’t my identity. It was a body, that was handled by others — it was transferred, moved, turned, dressed, etc. Even during medical procedures, which required undressing, I wasn’t abashed. Like my body wasn’t truly mine. It was just an object my self was attached to, probably by accident. Nowadays, I’m more attached to my body, though it’s not a fixed connection and it’s usually connected to an erotic experience. Still, it’s my body and I decide how it should be treated.

I exactly remember the moment, when I’ve heard the news about the decision [2] of the Constitutional Tribunal of Poland. It was 22nd October of 2020 and I don’t think I’ve 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. I’ve 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 didn’t 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 I’ve posted on my Facebook wall. I didn’t 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. I’ve also added that disfigured cluster of tissue is not a child, it’s just an alien growth in a woman’s body. What caused the greatest outrage, was a statement that I wouldn’t be surprised or angry if my mother had aborted me if she knew that I’ll 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. It’s 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? That’s 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 one’s 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 [3]. 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 doesn’t 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 didn’t 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, won’t 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 I’ll be still around to see it.

References

[1] Merrit Tierce, The Abortion I didn’t have, The New York Times Magazine, 02.12.2021
[2] To learn more, please read this article from the MS magazine
[3] The project to criminalise abortion was rejected by the Parliament on the 3rd of December 2021, though it doesn’t mean we are safe.

On Assisted Dying

TLDR: 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 person’s 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 “the norm”.

We can choose to say “There’s nothing more we can do”. But that’s a lie, and we deserve better.

We launched this e zine last year in October, 2021. We decided against calling it a newsletter because it’s not just about our news but the voices of disabled women and non binary people, showing opinions, reflections and creative pieces.

We had members who wanted the possibility of sharing some of individual pieces so we’ re posting here for easy retrieval later.

We need you here

From Fleur Perry
Fleur is a law student and disabled people’s activist living in the South West. Her main interests are accessible housing and Equality Act breaches.

Fighting for your needs and your rights can be draining in every way. You push and push against a sea of eyebrows slightly raised in amused disbelief, or bent into a sharp frown of “How dare you?” or receive the same flat emails carefully constructed to make “Go away” sound like good business.
If that seems familiar, you are not alone. You don’t need to fight this alone. Every member of the SoF community has met a barrier that needs smashing. As disabled women and non-binary disabled people, we know the impact it has, what it feels like, and have words for feels that non-disabled people have never had to know.
We share those experiences, the bad and the good. We share knowledge and resources and music and poetry, building context and learning from each other. Judgement and shame, intrusive questions and gossip are for somewhere else – not here. Mutual solidarity, inclusion, and making space are key principles.
We want you here. We want your opinions. We want your voice. Got something to say that no one’s ever said before? Say it here. Know something that you don’t think will make sense to anyone else? Try us! We want to understand. You will be heard. You will be believed. You will be valued.
We think this is the first step to change. If we want to try to do something to make our world a better place to live, it has to work for everyone, and that’s means we need everyone. If we don’t have you, we’re missing out.
I think the community is the most valuable part of SoF. The reports and opportunities to campaign on some of the biggest issues in the UK today are all built from the experiences of individuals, and the time and energy they each give to making sure that knowledge isn’t lost, but unleashed.
What do you want to say?

“Disability justice is the art and the practice of honouring the body” An interview with Lydia X.Z. Brown

In this interview with Lani Parker of Sideways Times, Lydia X.Z Brown talks about disability justice as a praxis which honours the body and the whole person. Disability justice is a radical framework which requires understanding the interconnected nature of oppression and that we must tackle all forms of oppression in order to change the system we live in. We also talk about differences in language, tensions within disability movements and the importance of using a variety of tactics amongst other things…

Read or listen to it at Sideways Times. Thank you, Lani and Lydia for the podcast.

We are warriors

from Sarah Rennie. 

Sarah is a former solicitor, her day-to-day work is research and governance advice. However, Sarah delivers disability equality training nationwide and acts as a consultant for select clients on internal equality working groups.

I owe a great deal to Sisters of Frida.

Years ago, I was asked me to join the steering group and I experienced a major case of imposter syndrome. Looking back – I’m not going to lie – I did have a lot to learn. I was in my late 20s and feeling pretty unsure about my identity. In fact, I would sometimes feel uncomfortable around disabled people due to what I now realise is a classic case of internalised ableism. I was a feminist, a solicitor-turned-access-consultant, a feminist and had started attending disability rights protests. Sheepishly, alone and stood at the back.

Within Sisters of Frida, I saw myself as the boring but useful person who could help with governance and report writing. In a space with such incredible and talented disabled women, I was just in awe. I listened a lot and absorbed their ideas and critiques like a sponge. Whilst I battled my insecurities, I was made nothing but welcomed and treated as one of the gang.

After helping out where I could, one of the first projects I really got my teeth into was the Serious Crime Act and the defence to the crime of coercive behaviour in an intimate or family relationship. I represented Sisters of Frida at the UN in Geneva, along with other DDPOs, to present evidence of violations on disabled people’s rights to the UN Committee on the Rights of Disabled People. This was one of the greatest honours of my life.

Over the years, my confidence grew but so did my personal self-esteem. I finally felt comfortable in my own skin and proud to be a disabled woman. Whenever anyone asks why, I always credit the experiences I had and friendships I made through Sisters of Frida.

But my newfound confidence in activism was bitter sweet. In 2019, I was about to face a pretty tough challenge: the block of flats I live in is wrapped in cladding like that of Grenfell Tower and riddled with fire safety defects. I knew that disabled people were facing additional financial and safety issues, such as lack of savings or means of escape, so I co-founded Claddag, a disability action group, with another disabled woman. Sadly for me, I knew I couldn’t run the campaign and fulfil my commitment to Sisters of Frida so I had to resign from the latter. As expected, the team understood completely and have given me loads of emotional and practical help with Claddag.

If our fight for justice in the building safety crisis is successful, then my first task will be to knock on Sisters of Frida’s door and ask if they’ll take me back to support with the work. As they are a group of compassionate, inclusive, uplifting and strong warriors and I have no reason to think they won’t welcome me home.

A unique voice: why Sisters of Frida Matters

by Bethany Young 

Bethany is actively involved in with Third Sector organisations, promoting equality and advocating for disability rights. She is a SOF steering group member.

People often ask me why I joined Sisters of Frida. Why do you need it? In the past, I have asked the same question.. For years, I had soaked up the idea that my barriers came from having Cerebral Palsy. It was my job to overcome these. My experience of being both Disabled and a girl, then a woman, led to more isolation, and more hurdles that others didn’t see. If I could not clear them or ignore them myself I was a failure. It was all my fault.

Looking back, these beliefs I was taught about myself made no sense. I was putting loads of effort and skill into every area of my life – from employment and Independent Living to family relationships and managing my CP. Nothing changed, in fact the barriers got worse. After reaching out for help, I asked myself – maybe the problem isn’t me? I realised that so many of my experiences came from the strings attached to me. My CP is mine. My body and my mind are mine. These barriers are not. I felt relieved because my struggles made sense without shame or guilt. Everything I thought I knew about Disability shattered. Such a big realisation gave me a sense of hope and freedom, but also fear. I was starting again. Now I had asked the right questions, I needed answers.

I looked for mentors in the Disabled community to get peer support and find out more. I wanted an active community working for social change. Before long, I found Sisters of Frida – a disability organisation truly led by diverse Disabled women. Their inclusive vision and values, creativity and collaborative way of working all made me want to get involved.

Since joining Sisters of Frida, I have worked on lots of wonderful opportunities. I’ve written quotes for press releases, helped plan events, write reports and advocate for Independent Living. Planning for our future is exciting. We are unique because we recognise people don’t exist in clinical, clear-cut tick boxes. Real life diversity is social, human and multi-layered. This idea drives Sisters of Frida’s work and partnerships. We build relationships to connect with other women’s organisations. We bring our lived experience, and knowledge to new audiences. I have amplified the voices of diverse Disabled women on current struggles, like Social Care or Covid-19. Our perspectives don’t need to stay in an isolated bubble. Together, as Sisters of Frida, we spark better, bolder conversations to create change.

I am proud of all I have learned and achieved so far whilst working with everyone in Sisters of Frida. I am a better communicator, collaborator and activist. Working with these women shifted how I saw myself. I know my worth. I found my voice by listening to them. I found answers by learning from them. I am not alone, because together we are Sisters of Frida.

It’s been sometime since we have had meetings – since the lockdown but as disabled people, we are still not confident about having face to face meetings and travelling on public transport.

At Sisters of Frida we decided to have a zoom meeting on Saturday 25th September at noon. It will be an event with a stimulating roundtable discussion with our international disabled sisters from around the world and then breakout sessions among you to discuss where you think SOF should be heading.

You can join using this Zoom link

Speakers

From the Sisters of Frida team

Agenda for the event

12:00 (noon) Start with introduction to Sisters of Frida and speakers

12:05 Roundtable with guest speakers

12:25 Discussion and questions for panel

12:35 Questions from participants

12:40 Conclusions and thank you to guest speakers

12:45 Break (15 minutes)

13:00 Breakout rooms

Questions

• What struck you about the roundtable discussion?
• How does this connect with your involvement (current or future) with Sisters of Frida?

13:45 Comfort break (15 minutes)

14:00 Feedback and what next?

14:30 End

BSL interpreters from Signalise and live captioning will be available.

Music in the interval from Miss Jacqui with thanks for permission.

Thank you to Campaign Bootcamp who generously provided funding that allowed us to make this event accessible.

Useful information

Sisters of Frida wants you to get involved! SoF has been working to build our capacity by working to make our processes more transparent and  to help streamlined so build up disabled women’s voices in all our magnificence. In order to do this we need to expand our steering group. Would you like to help steer the direction of Sisters of Frida? You will meet new people, learn and share new skill. If so, please send an email to  sisofrida@gmail.com and we will send you more information. 

The steering group is not the only way you can get involved. You can now join working groups and work on specific projects. If you are interested please get in touch at sisofrida@gmail.com

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

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

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

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

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

CEDAW 2019 – concluding recomendations with references to disabled women

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

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

Rachel and Eleanor with other delegates from Women NGOs

Rachel speaking to the CEDAW committee

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

Sisters of Frida celebatory event 4th May 2018 Greenwich Yacht Club. Filmed by Lucy Fyson and edited by Leonore Schick. Music from TRG Banks – Milton Milton.

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

Last night one of my new colleagues expressed surprise on  mention of my children – she said she had no idea I had children. She did not mean it to be malicious but the fact I have children prove surprising to most folks. I think, to be brutally honest, most people do not expect disabled people to be sexual beings let alone have offspring.

And for disabled women it is doubly problematic. Consider the stereotype of being a woman –as a caregiver, as a sex object, mother, housekeeper – you get the picture? Many of those roles are not seen to be within the capacity of disabled women. All the media, films of disability and sexuality are from the perspective of disabled men where they have their needs fulfilled by non-disabled women. Examples, Me Before You (even if he did not think it was enough to keep him living), The Sessions, there not many based on the needs of disabled women (excluding Children of a Lesser God).

There is not much space afforded to disabled women on sexuality and how to factor in disability in the search for companionship, romance, relationships and sex. The narratives are missing. I was made aware how much so when I joined the group of women who went to the first workshop (there are a series of four workshops) lead by Sisters of Frida steering group members, Lani Parker and Dyi Huijg, on Dis/ability and Sexuality. This workshop was titled Crip Sex, Because We Want It Our Way

As disabled women we have a wide range of experiences, positive and negative, around disability, sex and sexuality. Disabled women are sexy, sexual, passionate, loving, caring, desirable, hot, beautiful, strong and much more! Our experiences of sexuality are also affected by different kinds of oppressions such as ableism, racism, sexism, heteronormativity, classism and age.

 

In this workshop we will explore what sex means for us as disabled women, non-normative sex, positive self-image, exploring sex alone and sex with others

 

I felt we really shared our experiences as disabled women intersected by faith, culture, and sexual orientation. We examined the differences with impairments, acquired and from a young age, we spoke about chronic illnesses, the barriers and effects of medication and age. Does sex alleviate pain, do we/should we have sex when we are in pain? We compared the attitudes of social workers, medical practitioners and partners – in and out of relationships, domestic abuse from families, society and community pressures.

 

I cannot wait for the next session. I hope more people will come to visit this wonderful space where we afford each other sisterhood and non-judgemental sharing.

workshops

Themes and dates of the workshops

Workshop 1: Crip Sex, Because We Want It Our Way (finished)

In this workshop we will explore what sex means for us as disabled women, non-normative sex, positive self-image, exploring sex alone and sex with others.

Date: Sat 30 July

Time: 12-4pm

 

Workshop 2: When It Doesn’t Feel Good and It Isn’t Right

In this workshop we will discuss negative experiences and difficulties we have around sex and sexuality, our boundaries, consent, privacy and ableism in relationships.

Date: Sat 27 Aug

Time: 12-4pm

 

Workshop 3: Disabled Desire: Sexy and Sensual Possibilities

In this workshop we will discuss positive experiences we have and want to have around sex and sexuality, pleasure, and what it means to desire and be desired.

Date: Sat 17 Sept

Time: 11.30-3pm

 

Workshop 4: Sex: Getting What You Want and Need

Here we will build on the other workshops, and discuss how to develop confidence and feel empowered to do and want sex differently, challenge internalised oppression and other obstacles, and talk about how to put our desires and needs into practice.

Date: Sat 22 Oct

Time: 12-4pm

this project was funded by

 

 

 

— ——

Eleanor Lisney is a founder member and coordinator of Sisters of Frida. She is an access advisor, an NUJ member on the New Media Industrial Council and the Equality Council. She is also on the British Council Disability Advisory Panel and the web team of the International Network of Women with Disabilities.

 

Here are the videos from the day Disabled Women’s Voices from the Frontline Saturday 9th July, 11am – 4.30pm 

Introduction by Annabel Crowley

Simone Aspis

Sophie Partridge and Penny Pepper

transcript

 

Kirsten Hearn

transcript

Miss Jacqui

transcript coming soon

Pauline Latchem

transcript

Guests speakers – Jagoda and Jasmina Risteska

transcript

notes from discussion

Many thanks to for funding this event

We were asked to organise a disabled women’s panel at this year’s Feminism in London Conference in October.

A big thank you to Lisa-Marie Taylor, FIL’s organiser, for inviting us!

We did some publicity by having a stall and we ‘re grateful to Annabel, Zara, Jacqueline and Sophie for helping us with the stall!

(Click on photos to get a bigger photo)

Real Media came to do do a short video feature on it – many thanks!

transcript FIL SOF panel (Word doc)

Frances Ryan also wrote a piece for the Guardian on the event A Disabled Woman’s struggle is any woman’s struggle

Obi was kind enough to video the whole event – if you wish to follow it in its entirety

http://bambuser.com/v/5877942

great additions from Nidhi Goyal and Asha Hans Part 1

http://bambuser.com/v/5878073

with Q&A from audience

Individual videos

Asha Hans video

TRANSCRIPT Asha Hans (Word doc)

Nidhi Goyal’s video

TRANSCRIPT Nidhi Goyal (Word doc)

Frances Ryan’s video

TRANSCRIPT Frances Ryan (Word doc)

Becky Olaniyi s video

TRANSCRIPT Becky Olaniyi  (Word doc)

Rebecca Bunce’s video

TRANSCRIPT Rebecca Bunce (Word doc)

Kirsten Hearn’s video

TRANSCRIPT Kirsten Hearn (Word doc)

Thank you all for having taken part in the event!