As 2024 comes to a close, many of us look forward to the chance to switch off and recharge. However, we recognise that the Steering Group has been working hard for us with training sessions and helping with fundraising efforts.

Kym Oliver represents us at Women’s Budget Group report launch

Kym Oliver is part of the Sisters of Frida Steering Group and represented us at the recent Women’s Budget Group report launch. Here is the video, with embedded captions:

“Whatever is happening to the folks who live at the most marginalised intersection, that’s a representation of where your nation is actually at.”

Kym is also a Co-Founder of Our Living Archives and a PhD Researcher at City University. Thank you to Our Living Archives for this footage.

The Women’s Budget Group report is ‘Where do we go from here? An intersectional analysis of women’s living standards since 2010‘.

Tumu Johnson speaks to UNECE

In the meantime, Tumu Johnson, one of our directors, was at the UNECE Beijing +30 Civil Society Forum in Geneva 19-20 October 2024, organised by the NGO Committee on the Status of Women as a service to the women and girls in the UNECE region.

She was interviewed for ‘Best Practices and Vision for the Future’, as part of Sisters of Frida, alongside representatives from other specialist organisations and international organisations working on diverse issues, to share what has worked across the region.

You Are My Net – abridged, Anon

During this festive season, we hope you can take out some time, whether during a coffee break or while on annual leave, to look back on your accomplishments from 2024. 

Here is an article we hope resonates with you, in the season when so many of us are alone and lonely, to enjoy the festivities associated with it:

Every time I have a hard day, a situation, or an emergency, I have friends I can go to. Recently, it struck me that this wasn’t always the case. There were times way back when I didn’t have someone I could trust and talk to, who would help or want to. This is a position a lot of disabled people experience at some point in their lives. I worry about people I meet who don’t talk about friends, because though they may be happiest in their own company, they may not have someone who will notice when something’s wrong, or to turn to for advice.

There are times when this has made a huge difference in how a situation plays out, and this safety net is incredibly valuable to me.

And yet… We are so far apart. We hope that each other are OK rather than directly observing this ourselves. The narrower the bands of communication, the fewer signs we can use to understand how each other are doing. It takes time to learn the signs for each person, and it can be very unique to the individual. Impairments can dictate which bands are available to us, and the need for privacy can reduce these options, for example if you wish to communicate without being overheard, you may choose to use a messaging platform. Neurodivergence can also change which bands work best – I personally learn what changes in people’s voices mean far faster and more reliably than their facial expressions.

There’s a lot that I learned late that would have been useful earlier. Here’s some ideas for you to use if you wish:

1. Open the different communication bands as wide as possible. In person can offer facial expression, tone of voice, posture and gestures, clothing and jewelry (anyone else have an “I’m sad” t-shirt?), word choice, laughter and humming and silences and signs of joy or exhaustion like dark circles or tapping feet. Messaging can be great for saving some spoons, but traveling to meet in person when practical creates a stronger net, and means you know where you’re going if they need you, or you need them.
2. Learn your friends care needs, or those you can, and spend time letting others know yours. Remove as many barriers to spending time alone together, making sure that there’s space for topics and communication to be private whenever you both want this. This could be as simple as giving your home phone number to a friend so that they can call a PA in the next room for you when needed, or as critical as learning how to use an emergency med like an Epipen.
3. Practice getting comfortable asking others to leave the room and close the door for phone and video calls. Making this a standard practice will mean that nobody finds it suspicious that you’re asking for privacy in the event that you’re asking for support or making an emergency call about yourself or someone else.
4. Get a headset or earbuds, and get some for your friends. This will reduce the chance of your friend’s side of the conversation being overheard, meaning that even if you are in the same room as someone else, you can still have a semi-private conversation. This will make your friends feel more comfortable to speak with you openly, and in the event of an emergency, you can safely hear the other person and answer questions with a new code.
5. Use a separate digital device to others around you, and have separate digital accounts from others. Do not give your passwords to anyone. This means that emails and messages can be private, meaning your friends can share things with you confidentially and you with them and beyond, including sources of help, support, and advice. Sharing devices and passwords can mean that others can check your search history, messages, emails, and files.
6. Set up code words with trusted friends that let them know something is wrong, and what to do. “Do you want to come over for pasta bake tonight?” as an agreed code for “I need you to come over quickly”. Creating your own codes will let trusted friends know what’s going on without the code becoming known to someone who you may need assistance to get away from, or let them reach out to you for help when they don‘t have privacy. Be creative.
7. Make sure your friends know what level of privacy you have on each platform and each time. This will mean that they will know when it’s OK to talk about sensitive topics with you – and not get you into avoidable awkward
   situations.
8. Get into a rhythm. Got a friend who usually calls you twice a month hasn’t called for 2 months, and keeps saying sorry but not saying why? That could be a sign that something’s not OK.
9. Build your net. Find people you enjoy being around and trust and can rely on. This article was written with the help of 4 other people, all of whom I would trust in an emergency.
10. Talk about safety with everyone you want to be safe. Add your own ideas to this list. Ask others for their tips. Put them out there for others to find.

We have to build a net. You are my net.

Seasonal Greetings from the Sisters of Frida team…

New Steering Group

We would like to welcome the new Sisters of Frida Steering Group. We had a great first meeting last month.

The new members of Sisters of Frida Steering Group are:

• Emily Reynolds
• Isabel Marler
• Lena Mohamed
• Kym Oliver
• Priscilla Eyles
• Megan Belcher
• And Yen Godden

We are very happy that they have joined us. We will have some onboarding sessions with them to introduce them to the collective to start with and then they will steer the future of Sisters of Frida!

The photo is of the new Steering Group with the co-directors, Rachel O’Brien, Eleanor Lisney and Tumu Johnson. We look forward to running future events and projects with you!

Song by Dennis Queen

As is appropriate to the election season, we would like to celebrate with Dennis:

Art for a Free Palestine

The red poppy is the national flower of Palestine. It is made up of the three colours of the flag red white and green. The poppy’s red petals are often seen as a symbol for the bloodshed and sacrifices made in their struggle for freedom. In the spring Palestinian fields are blanketed with these flowers.

This is an art for action exchange! Follow the lead of BDSMovement.net/get-involved a Palestinian-led Boycott, Divestment & Sanctions movement for a free Palestine & an end to this genocide. I have also included a list of ways you can take direct & indirect action with all the organisations & people tagged.

This art for me, expresses the strength of the Palestinian people and I hope is a way to encourage actions for Palestine. For those who have taken action, may download and use this artwork for free. Spread the call to action by sharing on social media or printing and sharing.

Examples of ways you can use this art: 

– Yen Godden, Artist & Community Organiser (also Sisters of Frida Steering Group) @YenOutLoud

View more artwork, links and ways to take action via Yen’s Instagram post, or download all of the art here.

Video clip from the last social

We had our last of 4 socials funded by the Greater London Authority, where we shared food and talked about our experiences. We spoke about why these events are so important to us:

View this post on Instagram

A post shared by sisters of frida (@sisters_of_frida)

Relationships are messy (Part 1)

Lastly but not least we have a lovely article on relationships:

I grew up with the idea that I would meet a non-disabled man who would sweep me off my wheels in my late teens, have 2 children in my 20s, have a part time office job and some side projects that would make some small but important contribution to science. My husband would have a 9 to 5 doing something interesting that I enjoyed talking with him about. And that was it. No friends, no dilemmas, no travel, no PAs. An almost ordinary life.

Now in my mid-30s, I can say that’s not how it went, and I’m very glad of that. Real life relationships are messy, and unexpected, and unpredictable. My white picket fence life would have been rather dull, and a lot more lonely, and even dangerous.

My view of what I wanted and was going to get didn’t change until my early 20s. I met a man with a very similar set of impairments and needs to me. We also had the same sense of humour, taste in music, food preferences, and similar habits, and life experiences. We talked, all the time, and he understood everything I was saying (a new experience for me), and we took care of each other in all the ways care services don’t. We fell asleep watching movies together, sang duets, ate curry, and just enjoyed every moment we were together. He was a joker, making me laugh so hard I spat tea out of my nose. I was relaxed and free. He was an artist, and an activist, and quickly became the centre of my future plans. I imagined a cute little bungalow, with a couple of carers and a couple of cats. I would work in an office and he’d paint and we’d take care of each other and laugh and sing, forever. And then, due to clinical negligence, he died.

Much of what I’ve done since then is about building a world where this could have been. Arguing with medical professionals to improve standards of care based on knowledge discovered long before I was born, but somehow not yet implemented. Basic access to essentials like housing and care. I even ended up in his job role at one point. Making sure I do things that he would have been proud of, would have
made him laugh, and cheer, and sing. Making sure I sing.

And so I moved out of my parents’ house on my own. I’ve done things I never thought I could, made friends (which wasn’t something that came naturally to me). He left me alone with the tools to be not alone, and to deal with the world alone with the tools to deal with it, and to find my own way alone with the tools to find my own way.

Why am I writing in a feminist newsletter about a man? Because he’s a part of my story that led me to a world not dependent on men, or anyone else, to choose my path, but myself. He had confidence in me and my skills and passions that others around me didn’t at that time, and encouraged that confidence in me. That shouldn’t be rare, and it is precious. I wish that for everyone, and have met so many women who need it. I try to pass it on.

Since then, I have met others who share in that confidence, and who have kept me afloat. I have also met people who believe the opposite, that I’m incapable and ugly and worthless and unlovable and unhappy. Sadly, many of these people have been women, pushing others down to make themselves feel lifted up.

What I’d like my future to be like now looks very different. Whether I’m single, have a partner, or am married, I want to be doing something I enjoy. Monotony, predictability, and following the fairytale are not for me. Desperately trying to keep up whilst pushing my joy down and having it crushed by others can get in the bin. I want those around me to give me confidence and to be able to do that for others. I want to be so proud of me, you, and our community that I start singing. I want to spit tea out of my nose again. And I want to build where this can be.

– Anonymous

Sisters of Frida is carrying out a survey to understand our impacts of our work. This survey will help guide the way we operate. It will also give us an insight into the needs of disabled women & non-binary people. With this, we hope to get a better idea of our demographics, your interests and needs, to help improve the way we work.

Fill out the survey below or via Google Forms.

Can You Help Shape the Future of Sisters of Frida?

We need a new steering group to decide where we go next

Sisters of Frida is unique. We are the only collective of disabled women and non-binary people in the country. We create a space for disabled women and non-binary people that DDPOs don’t provide – in fact, nowhere else provides it.

Sisters of Frida formed from a need for disabled women to have a voice within the wider women’s and disabled people’s movements. We are led by ideals and strong principles.

We build community, a space where we want to lift ourselves and each other up, to centre us in thought and action, to celebrate ourselves with pride, to amplify our voices, to share our skills, to challenge power and privilege, and to pursue avenues of change for disabled women and non-binary people. We are a diverse movement committed to an intersectional approach to our work and collective liberation. We’ve impacted national and international conversations about disabled women within both the feminist and disability rights movements. We are committed to radical politics and cross-movement solidarity work.

Like many communities and organisations, the pandemic (and life, more generally) has stretched the capacity of the current directors to its limit. But more importantly, movements can’t flourish without change and evolution. Sisters of Frida needs new energies, directions, ideas, drive, and most importantly, people.

Our new steering group will decide where we go next. We want you to be a part of it.

Previous priority areas have included combating violence against disabled women and girls, and disability and sexuality. Most recently, we’ve conducted research on the impact of the pandemic on disabled women and gender non-conforming people. In all these areas, we’ve shaped conversations nationally and internationally to centre the rights and experiences of disabled women and non-binary people. We’ve often been one of the very few groups speaking from and for these perspectives.

Our future priorities will be up to you.

We’re proud of what we’ve achieved, but we know there are voices that have been missing from the conversations we’ve been part of that we haven’t been able to represent. Similarly, we as a community have mutually built and shared skills and knowledge necessary to sustain our efforts but we’ve also learnt that there are other strengths needed to take Sisters of Frida even further.

We are looking for up to 8 people to form Sisters of Frida’s new steering group, to decide our next directions and develop our new organisational strategy. We’re looking to ensure Sisters of Frida can continue and is sustainable.

To do that, we need people with a diverse array of experience, formal or informal, including around fundraising, finance, strategic planning and organisational development.

If you think you can help shape the future of Sisters of Frida we’d love to hear from you.

To find out more about applying to be part of our new steering group, you can find our application documents linked below. They’re available in plain text and easy read format.

What can you expect from the Application process?

• We will close submissions at 5:00pm on 3rd March 2024.
• If you have any questions at any point in the application process, you can get in contact via sisofrida@gmail.com.
• Responses from one of our part-time workers will come as soon as possible, on Wednesdays and Fridays.
• After submissions are closed, we will be in contact shortly afterwards to arrange access for interviews.

More information and to apply

Background to Sisters of Frida

• In standard read (Word document)
• In Easy Read (Word document)
• In Easy Read (PDF)

Steering group call out

• In standard read (Word document)
• In Easy Read (Word document)
• In Easy Read (PDF)

Application information

• In standard read (Word document)
• In Easy Read (Word document)
• In Easy Read (PDF)

Art piece by Eleanor Parkes

She can be found on Instagram @e.j.parkes

With gratitude for sharing with us

Article by Simone Aspis

I will just begin by introducing myself before setting out my position on Heidi Crowter’s court case, the legal challenge to the Abortion Act on disability discrimination and human rights grounds. Heidi Crowter is currently applying to have her case heard by the European Court of Human Rights after the Supreme Court have refused permission to appeal during May 2023.

I am firstly a disabled feminist who identifies herself as a member of the LBGTQAI+ community. And yes I am Jewish and Yes I am a paid up member of a progressive synagogue and Queer Yeshiva. Nope I am not a pro-lifer or anti-abortion either. I have spent the past 25 years fighting for disabled peoples’ rights across a whole range of issues, anti-disability discrimination, human rights, inclusive education, independent living and medical ethics at the beginning and end of life whilst working for various disabled peoples led organisations and campaigns. I have also been involved in developing the BCODP’s bioethics training pack as well. If you would like to know more about myself click https://www.simoneaspis.co.uk/.

Whilst I no longer support Heidi herself because disability equality has been used to peddle anti-abortion agenda, nevertheless the principle of promoting non-disability discrimination or more broadly non-trait discrimination throughout reproductive decision making is one that needs further debate, and it should not be simply argued away by a woman’s pro-choice rights to abortion. Heidi’s court case raises a bigger question, which is to what extent is it a pregnant woman’s right to choose the traits of her child to be born.

For me there are two very distinct questions that arises from Heidi Crowter’s court case.

The first one is, should a woman have a right to an abortion if she/they do not want children per sue for whatever reason? My answer is a definite Yes.

My second question is, do individual women have the right to decide the human traits of a future child to be born? My answer is No.

Human traits selection of a future child covers disability, race, sex and other traits viewed generally as being desirable or undesirable by our society. Male, white and non-disabled are valued traits of children society generally values. On the other hand female, colour and disabled are not valued traits of children society generally values.

I do not think it should be for pregnant women to make the decisions about the type of future child they want to give birth to. Such decisions have an impact upon the future of our society and the constitution and diversity of any subsequent populations.

States have tried to strengthen the position of women that includes access to education alongside providing financial incentives to positively encourage women to give births to female children who otherwise would had been aborted. In the global South, states have offered financial inducements to encourage the birth of more female babies as they are considered as a drain on family finances. Whilst, feminists have contested the status of girls and religious traditions (including financial customs), such challenges are insufficient to deal with the in-trenched view of women within patriarchal societies that
continue to favour males. One of the unintended consequences is that individual women who decide to give birth to a male baby, think through what would be best for themselves and their individual family unit. I do not expect individual women to consider the cumulative impact of individual women making similar decisions elsewhere in choosing the sex of their child. I have the expectation that the state may well need to intervene to ensure that there is a sufficient diversity reflected within our population. So, the state does have a role in ensuring there is no skewing of male births by making sex-selection abortion unlawful with the aim of maintaining appropriate sex ratios that allows for population replacement and growth. Whatever reproductive technologies are used, there is no getting away from the need to have both male and female births to ensure that the human population exists.

So where does this leave disability because one can argue that there is no need to have disabled people, like you need women and men to guarantee the continuation of the humankind. Not only do we need a society to reflect biological sex diversity, but also one that encompasses individuals with a diversity of human traits including those with physical, sensory and intellectual abilities. After all, we need a population consisting of individuals with a whole range of human traits to have a functioning society. Society is not going to function if we do not have those with all sorts of traits that encourages caring,
artistry, paying attention to detail when it comes to health and safety alongside the accountants, lawyers and all the other roles that are needed and where some of those human traits are commonly (not exclusively) associated with a disability diagnosis.

Despite disabled people having all sorts of human traits needed to create a healthy diverse society, we know there is a very high rate of disability-related abortions because women are too aware of the disablist environment that makes bringing up disabled children a big challenge when there is minimal support systems in place and where everything is deemed to be a struggle. Even if we have all the incentives and a brilliant inclusive systems in place I do not believe that alone would encourage the birth of disabled babies. Just like with the incentives for raising female birth rates, such incentives do not
necessarily encourage women to raise and give birth to disabled babies. Just like with women who opt for sex-selection abortion, they are thinking what is best for themselves and their families. Like with sex selection I do not expect women to consider the cumulative impact of individual women who are making the same decision to terminate disabled babies. So, if we accept individual women’s right to select the human traits of their child is a private matter, then that removes society’s response to our population skewing towards a future without disabled children such as Downs Syndrome or Autism with associated types of human traits. If we view that abortion is simply a woman’s right and nothing else, then we move eugenics from the public to the private sphere that goes beyond public debate and state intervention to ensure we have diverse future population. A population reflecting individuals with diversity of human traits would require state intervention, hence making human trait selection abortion unlawful. If I remember rightly, one of the arguments used by the Conservative Party for not needing anti-disability discrimination laws back in the early 1990s is that we can rely on education, persuasion and good will to ensure disabled peoples inclusion is promoted, even during the time when services were better funded than they are currently. It took the introduction of anti-discrimination legislation, the Disability Discrimination Act, now the Equality Act to bring about change that viewing disabled people and disability equality as a rights based issue.

My position is supported by the UN Convention Rights Of Persons with Disabilities (UNCRPD and Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW) committees that do not support human trait selection abortion, in this case sex and disability.

There are a number of ethical questions that we need to debate by disabled women.

• What type of society do we want to live in?

• Who should decide on the type of society we will have, which will impact upon the present and future populations.

• Should any section of our population become sole decision makers about the kind of future society? I.E. Pregnant women in this case?

By Simone Aspis (Changing Perspectives)

Treasure

A wheat pillow. Chocolate. A cuddly toy. Jewellery. Homemade dinner. Artwork. Clothes. Books. Mugs.

These are some of the material gifts I have received from other disabled people over the past few years. Having pre-made dinner ready to go when you don’t feel well is brilliant, and wearing clothes and jewellery from someone you might not have been able to see in a while feels like being closer to them, somehow.

Good jokes. Bad jokes. Listening. Laughing. Sitting silently side by side. Heckling politicians side by side. Motivation. Backup. Interesting challenges. Opportunities. Protection. Genuine caring. Harsh truths. Acceptance. Understanding. The quest for knowledge, and the relay between those who know and those who need to know. Pockets of peace.

These are some of the non-material gifts I have received from other disabled people over the past few years. These are more important. Knowing that you won’t be ridiculed or punished for who you are allows you to figure it out, if you’ve not had that opportunity. Joining in the fight for legal rights to be upheld and extended is much easier when you’re not fighting alone.

Last year, I had a health issue which required use of a new device for a few weeks. I didn’t have much knowledge, and it had been attached to my body in a way that did not work. Another disabled person sent me a video of how it should work and what they thought had happened. I was sleep-deprived, in pain, feeling awful, and not able to concentrate. They explained everything step by step, patiently, in clear language with a calm and caring voice, without judgement or shame for me not knowing something so simple. It felt like a hug. If I could download how to do that into the brains of every NHS professional, it’d be wonderful. It’s easier to get used to something new when someone with lived experience can talk you through.

A friend made me cry last night. We don’t speak often, as one or the other of us might have a last-minute disaster or just not have the energy. WhatsApp and Messenger just have to do in between. We laughed about recent news, and talked about something personal. She remembered the context that I’d told her a long time before, and spoke of it in a caring tone. To hear something understood and cared about that I’ve had to defend against people who don’t believe it was wonderful.

These things are more valuable, and I treasure these memories.

Take care of each other. You will be treasured.

by Anonymous

Social meetings after lockdown

Sisters of Frida had 2 social meetings this year. We will be having 2 more next year. The meetings are generally to meet as disabled women in London, about SOF, and for us to get to know each other. Please send an email to Eventadmin@sisofrida.org to register an interest.

Photo below of the first meeting in North Greenwich

A Tribute to Lisa Ellwood

Lisa passed away on May 11, 2023. She was only 57. I was shocked and saddened by the news. Though we had never physically met, we had many long conversations on the phone. I was hoping to meet her one day in Edinburgh when she moved there from rural Wales. She gave me encouragement and solidarity on being a disabled woman of colour and gave me lessons on intersectionality. She told me of the discrimination she faced from some disabled people here not because she was a Native American but because she was also autistic, with mental health issues and not afraid to speak out about suicide or domestic violence. She inspired me with her passion for disability rights and taught me to embrace my different identities. She was strong – a feminist warrior – in spite of being hampered by her disability and impairments.

She was also a strong supporter of Sisters of Frida and was in the Steering Group for a short while. She helped in getting news about us at the UN CRPD and CEDAW in Geneva. She believed strongly in having a voice/platform for disabled women and helped us in every capacity. This is her profile in LinkedIn:

A strong communicator with a distinctive voice, Lisa J. Ellwood is an Autistic Lenape and Nanticoke Native American currently resident in the UK.

Ms. Ellwood is a Freelance Journalist & Writer and an active member of the Native American Journalists Association, Investigative Reporters & Editors, Society of Professional Journalists, and the National Union of Journalists (UK). She has a B.A. Degree from Temple University with a major in Journalism and Advertising and minors in Marketing & French. Her specializations include Data Journalism & Visualization, NDN Country, Disability Rights, Mental Illness and Autism.

Lisa’s Disability Rights & UK Politics blog, The Creative Crip, has been featured in Society Guardian many times. She was a freelance Correspondent for Indian Country Today Media Network from September 2015 until its hiatus from active operations September 2017 as well as a Contributing Editor and Features Writer for The Promota Africa Magazine. In September 2011 the Left Foot Forward Political Blog cited her effective use of social media and blogging in its “Nomination for most influential left-wing thinker: The disabled rights community”​ feature. She has also been interviewed for Grazia Magazine (Australia) & appeared on radio shows internationally including Native Trailblazers.

We miss her.

Here are tributes from her colleagues:

written by Eleanor Lisney

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.

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.

Sisters of Frida wish to offer our deepest condolences to everyone who knew and loved Nila Gupta, we know their loss will be heart felt. 

How do we even begin to tribute the vibrant and radical being of Nila, our friend? Nila was talented, radical, unique in their insight and was amazing at connecting with people. Nila was also a great activist and has been involved in many networks and projects, as well as the recent ones below. 

We can share some of Nila’s recent work in the disabled people’s movement, as Nila speaks best for themselves..

• An article by Nila on Disability Arts Online – Life Drawing and Body Work
• Video interview Sisters of Frida and Culture Access – Disability History Month: The intersection of being Disabled and a person of Colour

Part of Nila’s legacy will be that they co-founded Onyx, and we encourage other BiPOC disabled artists to get involved. 

We are saddened that Nila will no longer be able to join us in future projects, and Nila’s fire will burn on in our hearts and Nila’s legacies. 

Written by Dennis Queen for Sisters of Frida

***trigger warning*** medical and surgical trauma.

‘Making Space for Trauma’ is an ongoing series of digital collages and drawings, in which I use both found and personal images to re-contextualise recent medical traumas. This is a process I have found necessary to make space for and work through these trauma’s. In my experience as a young women with a chronic and rare condition and a history of medically documented trauma I have been frequently gaslight by medical professionals and having a history of trauma has often stood in the way of an accurate diagnosis and adequate care. On the flip side of this the trauma of not being believed, of being sick and of having to fight so hard for medical care has been completely overlooked by Western biomedical institutes which have not taken account of how traumatising being a patient can be. 

This is part of the Sister Stories series.

Recently, I found out that a friend who shares my illness (Ehlers Danlos Syndrome (EDS)), a friend who was instrumental in my pursuit of diagnosis and proper treatment and who is a publicly visible advocate for disabled people, was being stalked by someone who accused them of “faking” and “has a friend who is writing an article about it.”

The “proof” that my friend is faking their illness? Sometimes they stand up to take selfies. Sometimes they go to see a band. They have tattoos even though EDS affects the skin.

In short, they do things that most people with EDS do, when we can. We can’t always, but when we can, we post about it online because this is the life we want people to see us living. Because we can’t tweet about our aches and dislocations and accessibility nightmares all day. No one would want to be friends if we did that, and we know it. So we cultivate carefully, and try to show as many “good days” as possible, even if a good day only lasts three minutes.

Sometimes I save pictures and stories instead of posting them right away. I wait for a day when I can’t leave my bed, so I’ll have something to talk about while I’m applying ice packs and heating pads and medications. The pressure to seem normal and fun is enormous. I am working with fewer materials than most.

If you go around trying to poke holes in people’s stories of medical journeys, thinking that you know
what life is like for them and how it should look on the outside, I want you to imagine something for me.

Imagine you got a car for your eighteenth birthday.

The car looks good, but it has some problems. Sometimes the A/C quits. Sometimes it stalls. It pretty much always shudders and knocks, but you and your friends all get used to that. You hardly notice it anymore. Over time, though, you start to think that somebody rolled back the odometer on this beast; it seems to have more frequent and serious problems than your friends’ cars. When you take it into a mechanic, it’s never just the brake pads that need replacing, it’s always the discs. The mechanic seems
a little baffled by your old-new car. They’re still happy to charge you, though.

You can’t afford a new car, and you can’t really afford to keep taking this one into the shop, either, so you go through a lot of duct tape and Bondo. You learn to do some work on it yourself, even though you don’t have all the tools. You spend a lot of time washing it and touching up paint to make it look presentable. Once in a while, someone compliments you on it, and you’re a little baffled because you know how it runs, but they don’t, so you smile and thank them.

At some point, you decide that even though your car is unreliable, you want to take a trip out of town. It breaks down in the driveway. You stay home and don’t mention your disappointment to anyone.

When you take it back to the mechanic, he says things are getting worse and will be even more expensive to fix now, but you don’t have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driver’s side doors won’t lock and sometimes it breaks down for no reason.

Now imagine you can never get out of the car.

---

There is never a reason to interrogate a stranger about their disability.

This is part of the Sister Stories series.