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.”