Disability History Month in the UK takes place from the 20th November to the 20th December. At Sisters of Frida, we look at the experiences of disabled women and gender diverse people, as our stories are usually overlooked in disability spaces, or feminist spaces.
We discuss topics people don’t always acknowledge: isolation, relationships, sexuality, and our safety as disabled women. There’s also the emotional and practical labour we do, as many disabled women are also mothers and/or carers.
This Disability History Month, we’re celebrating the solidarity of disabled women and gender diverse people. We hope that more people pay attention to understand the issues we face, and support the work that we’re doing.
As the year draws to a close, we want to celebrate the stories and creativity of disabled women and gender diverse people. Wishing you warmth, connection, and solidarity, from Sisters of Frida.
Welcoming our new Co-Director, Svetlana Kotova
We’re excited to announce our new Co-Director, Svetlana Kotova. A founding member of Sisters of Frida, Svetlana is a Disabled lawyer who has spent many years fighting for the rights of Disabled people. She has worked in a range of advice and policy roles, supporting Disabled people to advocate for their rights locally and internationally. Svetlana is passionate about ensuring Disabled people have equal rights and can use the law effectively to challenge discrimination and social injustice. She is also a coach and looks forward to supporting others in that role.
Alice Wong a pioneering writer and disability rights activist, passed away on Friday, 14th November, in San Francisco.
Wong became a powerful voice for disability justice, challenging systemic ableism through her writing, activism, and the Disability Visibility Project. Known for her sharp humour, she authored Year of the Tiger and edited collections such as Disability Visibility, earning a MacArthur “genius grant” in 2024.
In the days after her passing, a statement she had written for social media resonated widely, celebrating friendship, community, and storytelling while sharing her journey toward self-acceptance and calling for more stories from disabled people.
In her own words, “I’m honoured to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down.” Her legacy of advocacy, courage, and wit will endure.
Why Changing Places are important for disabled people
The more we research into accessible venues, the more we realise how important it is to have Changing Places toilets in order to be inclusive.
For those who do not know what Changing Places toilets are, they are toilets with extra space and equipment such as hoists and an adult changing table for people who has less mobility and need extra help to access facilities. Standard size ‘accessible ‘ toilets are too small to accommodate helpers and do not have the equipment.
Equipment found in Changing Places includes:
A height adjustable adult-sized changing bench
A tracking hoist system, or mobile hoist
What makes Changing Places Accessible?
Enough space for a disabled person and two carers
A centrally places toilet with room both sides for a wheelchair to maneuver
A privacy screen or curtain
A wide tear-off paper roll to cover the adult changing bench
A large waste bin provided
Non-slip flooring
Without Changing Places toilets, many disabled people are restricted in being able to travel, attend events or work. When it comes to disabled people who menstruate, there is that added urgency.
At Sisters of Frida, we try to locate venues that has Changing Places toilets or have them nearby. We also need to ascertain that they are well maintained and functional.
We are delighted to share that the City Bridge Foundation has awarded Sisters of Frida a significant grant over two years through its Bridging Divides Programme. This generous support represents an important milestone for our organisation and will play a crucial role in advancing justice for disabled women and gender diverse people in London. The funding will strengthen community-based knowledge, enhance cross-sector collaboration, and ensure full participation and access support for all our members and wider contributors. It will also provide vital resources for consultancy work and the development of a pilot research project.
The Women’s Resource Centre will act as our host organisation on behalf of Sisters of Frida throughout this period. In addition, this grant enables us to expand our team. We are delighted to welcome Anahita Harding as our communications, outreach, and relationship management officer and Niku Gupta as our new administrator. They will be working on Tuesdays and Thursdays and can be contacted at admin@sisofrida.org and comms@sisofrida.org respectively.
We are deeply grateful for this invaluable support and look forward to the opportunities it will create for strengthening our work and amplifying the voices of disabled women and gender diverse people across London.
Are You Comfortable Yet? Disability Arts Online zine review
This review, written by Mike Layward for Disability Arts Online, explores Are You Comfortable Yet?, a zine created by our new comms team member, Anahita Harding. The piece examines how the zine engages with disability and performance, and how live performance can be translated into zine form.
Eleanor Lisney. Photo taken from University of Greenwich
We are delighted to announce that our director, Eleanor Lisney, has been awarded an Honorary Doctor of Art by the University of Greenwich in recognition of her outstanding contribution to disability rights and culture. A globally respected campaigner and writer, Eleanor co-founded Culture Access and Sisters of Frida, has influenced national legislation, and has represented disabled communities on international platforms, including at the European Parliament.
Since 2018, she has played a pivotal role at Greenwich, pioneering the first Disability Culture Festival, contributing significant research, and leading a UKRI-funded project at the University centred on disabled people’s lived experiences. Her dedication to disability rights, her insistence on an intersectional framework, and her commitment to amplifying marginalised voices continue to inspire.
Disabled, Queer, and Broody
We’re grateful for this piece from our anonymous contributor. Thank you for your continued support:
Anon
“I don’t want kids. I can’t afford kids. I don’t have enough energy to take care of me, sometimes. I wouldn’t be a good parent. And I really don’t want to be pregnant, ever.
And yet, I got broody. Again. Every time I’m in a good relationship, I start to want to cuddle stuff, and start crying when I see anything I find adorable that I can’t cuddle if my hormones are a bit higher than average. Fluffy animals are a particularly high cry risk.
“Get cats!” or “Get IVF!” are what some of my friends have suggested. These options are both unaffordable in money and spoons.
I know there are more options, like being a step-parent, or fostering, or adoption. I know many disabled people make it work, but I don’t think I could do it; I wouldn’t be able to be the kind of 24/7 or consistent pattern parent that I would want to be.
I could be great as an only sometimes, but I don’t have siblings who need a niblet-sitter.
But I have energy that’s going to find somewhere to go, and my younger PAs are already getting smothered.
Trying to think what I realistically want is tricky. Anything I write sounds like a cheesy advert from the 90s:
Do you need encouragement to do something scary? Having a bad day? Got something to celebrate? Perfect, I will lean my head on your head and say supportive things, if you put your head on my shoulder. I can also make comforting noises and pasta! If you’re a grown human who needs some extra warm vibes just occasionally; this Disabled, Queer, and Broody might be for you! T-rex arms and positioning hairband included!
If I had the money, I’d build a queer-safe flat block for adults who need to get away or have been kicked out of their previous home.
Everyone has their own space and everything they need to live, but also knows that there is a friendly person just down the hall who has made extra potatoes, and will tell you that your new shoes look great, and ask how you’re doing and mean it! You need to know how to plait your hair or mend something?: just ask! Your home comes with a Disabled, Queer, and Broody neighbour! (Spoon levels not guaranteed).
At the moment, I have houseplants. They’re not very cuddly – particularly the cactus – but they’re well-fed, well-watered, and having babies of their own.
Plants included!
I haven’t found the solution. I don’t know what realistically that might be. There might not be one.
But right now, I think a lot of disabled people and a lot of queer people need some hugs, so just yell if that’s you and either I or someone else who feels like this will appear in a cloud of glitter and carbs.”
Thanks.
OpenOut
Photo courtesy of OpenOut.
A warm and merry Christmas from OpenOut (formerly Open Barbers) Hair. Many of us have been welcomed into their salon over the years, and they’ve generously offered home haircuts for disabled people when needed. E-cards can be bought in store, and merchandise from their online shop. All proceeds go toward helping low-income clients access affordable haircuts
ezine “We are Sisters of Frida” (8)
In this ezine, we have some artwork from Culture Access. They worked together as a group and individually. These have been in an exhibition and will be housed, hopefully, more permanently in an art gallery when it opens in the summer.
Culture Access
Culture Access CIC, a collective of Deaf and Disabled people, had an exhibition of their joint artwork at Woolwich Centre Library. It is a pan-disability group and Deaf, Blind and Visually impaired, neurodiverse people all worked together. Many of the group had not produced any artwork before and here are some of their graphic and tactile examples. They have an offer of a longer exhibition in a couple of months in south-east London, to be announced later.
Here are the artists’ comments on their artwork:
Anahita Harding: “this collage weaves together green fabric knots with a variety of colours and textures— inviting hands and eyes to explore.”
Eleanor Thoe: “Durian is a favourite fruit from East and South East Asia. It is a strong and pungent fruit and has a spiky exterior. But the delicious creaminess is unbeatable. It brings back memories and reminders of my heritage as an immigrant here.”
Kamila Miri: “Music has charms to soothe the savage beast and always brings people in peace and harmony.”
Sajida Shah: “I don’t need vision to see my artwork, I can feel it and it’s just as good.”
Sue Elsegood and Kate Brown: “When diverse threads weave together they become stronger & create something uniquely beautiful”
Commission on the Status of Women Parliamentary Briefing
Eleanor and Kym went to the briefing at Portcullis House for Sisters of Frida.
2025 is the 30th anniversary of the last UN World Conference on Women held in Beijing and the ‘Beijing Declaration and Platform for Action’ (BPfA) which stated commitments of participating countries. The BPfA remains a foundational document for advancing towards equality of women and men. 30 years on, the BPfA has not been fully implemented anywhere in the world.
Every year at the UN Commission on the Status of Women (CSW), the annual UN event to monitor progress on the BPfA, participants fight to hold the line against a roll-back on the rights for women and girls globally.
This March, a sizeable UK NGO delegation participated in the 69th Session of the CSW and were active in all areas of the Commission. The UK Government endorsed and helped negotiate the CSW69 Political Declaration, which improved on the Political Declaration made 5 years ago. Yet it is not the robust document that women and girls need.
In the photo are Kym Oliver, Eleanor Lisney and Zarin Hainsworth (NAWO)
Green Paper ‘Pathways to Work’
Welfare Not Warfare
We are much concerned, as are other DDPOs and Disabled people, with the government’s Pathways to Work Green Paper. Some of us took part in the marches on 26th March.
Mass Lobby on 21st May
There is much happening to fight against the cuts.
The next big event is on 21st May, when there is a mass lobby in parliament. It’s a powerful opportunity to speak with one voice.
If you can make it, please come and meet with your MP, and tell them to vote against these harmful cuts.
There will be information provided on the day to support you, as well as volunteers from many Disabled-led organisations helping attendees.
You can also get funding to travel to Westminster and stay in a hotel if needed (see image below).
Sisters of Frida is working with the Women’s Budget Group to research the impact of cuts on Disabled women.
Many thanks to the generosity of those who responded to the questionnaire – we will keep you posted on the outcome of this research.
The questionnaire was described like this:
“The Women’s Budget Group (a feminist economics think tank) and Sisters of Frida (a Disabled women and non-binary people’s collective) are conducting analysis of how the changes to disability benefits and work support announced by the Government in March 2025 will affect Disabled women specifically. We will use the findings from this research to put pressure on MPs, politicians and policymakers, to reconsider these reforms and protect Disabled women, and Disabled people in general, from poverty and socio-economic hardship.
We are using national statistics to describe the impact these reforms will have on Disabled women. We are also doing interviews with women with lived experience of disability to better understand how these reforms will affect their lives, and the effects the announcement of cuts is already having on women’s health and wellbeing.
If you agree to take part, we will ask you to share your experiences of disability and state support by answering the questions below. Your participation is voluntary, and you do not need to answer any questions you don’t want to, and you can stop completing the survey at any point if you wish to.
Your responses will be used to illustrate how disability reforms are expected to impact Disabled women. We may use excerpts of your answers in our briefing. It will be anonymised so that the information cannot be linked to you.”
QUESTIONNAIRE: The impact of the Government’s proposed reforms to disability benefits announced in March 2025
Please help with this questionnaire – to contribute with data crunching against the Green Paper: Pathways to Work: Reforming Benefits and Support to Get Britain Working. This is one response to show the impact on Disabled Women and non binary folks with the cuts. We collaborated with the Women’s Budget Group on this. We know many of us will be affected – apart from online or otherwise protests, this is another way of showing what this will cost us as a community. There’s a questionnaire – please fill it and return to sara.reis@wbg.org.uk by Wednesday 7 th May. Apologies for the short time but its to fit it into the consultation timescale.
Join us for the third SoF social, 30th March, 2 – 4pm.
It is Easter weekend, we will celebrate together with this social. Our friends celebrating Ramadan will be able to take the food with them. We will have a discussion on what intersectionality means, led by Tumu Johnson. The venue is accessible, with level access and automatic doors.
For those who have not registered yet, please send an email to eventadmin@sisofrida.org. It will be at Greenwich Peninsula, on the Jubilee Line, North Greenwich station. We will give full address with registration. We hope to see you there.
Help us improve how we work
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.
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.
a white lace piece, of an insecta white lace piece, selfie
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
Photograph of Lisa
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.
The second SOF meeting 29th Oct will be in Islington
At the first social.
The next Sisters of Frida social meeting is on 29th Oct. It is at 1pm and will be in Islington. Please let us know if you re coming to eventadmin@sisofrida.org if you’re coming. Please let us know your access needs ( soft chair etc) and BSL interpreter if needed as soon as possible. Please include your dietary restrictions eg. vegan, vegetarian, gluten free.
We will give the exact address closer the date.
First SOF meeting after the lockdown
The first Sisters of Frida meeting after the lockdown on Saturday 23rd Sept, 1pm. We’re afraid there’s limit of only 20 places but we will have 3 meetings more. It will be at Greenwich ( Jubilee line) for the first. There is a Changing Places toilet nearby. It is at an Italian restaurant, basically pizza, penne and lasagna. There are vegetarian and vegan choices but we will go elsewhere if you need gluten free (lots of other food stalls nearby). The chef cannot guarantee gluten free when pizza is being made.
We will also have BSL interpreters, please let us know if you need or have other access needs.
If you need BSL interpreter, please let us know ASAP.
We ve been asked to add that women who need to mask can do so.
And please can you take lateral flow test before you come.
The meeting is generally to meet as disabled women, about SOF, and for us to get to know each other. We re not planning any speeches – not for this first get together anyway.
Sisters of Frida is the only disabled women’s collective in the UK. Over the years we’ve connected with many different groups and shifted conversations on intersectionality. Our work has been incremental to both the feminist and disability rights movement in the UK. We are radical, we do cross-movement solidarity work.
Some of our work include: – shifting the narrative on disabled women rights with our work on shadow reports for various UN Committees (CEDAW, CRPD for example) – helping to lobby government policy on domestic violence. – organising peer to peer support events for disabled women & gender non-confirming people- campaigning alongside other disabled-led on numerous issues eg welfare cuts – reporting on the impact on disabled women & gender non-conforming experiences during Covid-19.
We’re at a crucial stage where we need funding to develop our structure.
Can you help us?
By making a one off end of year donation to us, you can help us grow. To do so, just click on the link below:
We’re also open to receiving help in other ways. Perhaps via blogging, social media volunteering or some support. If there’s anything else you’d like to do, we’re open to it. We’re also keen to receive movement building & fundraising advice. Just drop us and email at hello@sisofrida.org
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.
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.”
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.
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.”
e zine “We are Sisters of Frida” (2)
This was published December 2021.
A still and digital print from Aminder Virdee’s series ‘KaleidoSkeleton Ti: The Desi Cyborg (2020-21)’. Virdee’s work was included as one of the best avant-garde audiovisual works of the year for BFI’s International Film Magazine, Sight & Sound, in their annual special.
You can visit Aminder’s website to learn more about the artist and visit the full project webpage for the full background, exhibition information, and the project itself.
International Roundtable
Back at the end of September, we held an international disabled sisters roundtable with some amazing speakers – Virginia Ossana; Carmen Yau; Mali Hermans; Rachel O’Brien; and Eleanor Lisney.
The event was recorded and now available on YouTube, and is also embedded below!
P.A.s and Consent
“There was an incident. I’ve had to end someone’s contract, which was awful. For confidentiality, I can’t tell you the details.”
That’s what I’ve been saying for days, to anyone close enough to know both people involved. This is what really happened.
I hired a PA I shouldn’t have. I saw red flags at interview, and I doubted myself. I’m aware I’m not a trusting person, and that my instincts can be wrong, and so I chose to give someone the benefit of the doubt.
Fast forward 6 months, and I’m crying and shaking behind my laptop, trying not to make a sound, desperately asking friends what to do.
All because the PA lay their arm on my breast when washing my face. This doesn’t sound like a lot, and I spent a long time telling myself to stop being “silly”, it’s nothing.
The reason I felt like this was because it wasn’t nothing. It wasn’t the first time, or the 20th time. It wasn’t something that could be avoided by careful explaining, because I’d done that. It wasn’t because the person didn’t know that you need to be respectful around other people’s bodies, and in particular the 3 Bs: Boobs, Bums, and Bits. I’d explained that, awkwardly but properly.
No, I was shaking and crying because non-consensual touching is icky.
The more it happens, the more icky it is, and if it’s any of the 3 Bs, it’s extra ick. I don’t think anyone reading this would disagree with this.
Though the PA did. “I didn’t mean to”; “I don’t know how to do that”; “I forgot”. The first several dozen times, I listened to that, and gave her another chance, and another, another. And each time it felt more ick, until just the sound of the PA’s voice made me start to feel panic.
Luckily, I have good friends, who were able to advise me and seek further advice on my behalf. They told me I didn’t have to go through that indefinitely. They told me it was OK to trust my judgement, and they would support me regardless of what decision I would make. They didn’t downplay it or ask unnecessary questions. They gave me the facts, and a bucket of empathy, and made sure I took care of myself and took that as a priority. It was gross misconduct, which means the PA has been fired. I’m safe now.
Why? Why did you do this? I kept wondering. Then someone with a similar experience asked me if they were consciously or unconsciously getting something out of it. I remembered the smile on the PA’s face when being too hands-on, and the movements of their touch. Yes, they enjoyed it. I can’t say exactly why or how, but they were getting joy out of something that made me feel uncomfortable, and continued to do this after being told many times that it wasn’t alright to do this. Icky.
I’m writing this because I hope it’ll be useful to someone else. The more trusted friends I spoke with, the more it became obvious that I was not alone.
To prove this, I asked SoF to put up a Twitter poll. The results speak for themselves. This happens. A lot more than we’re willing to talk about, and a lot more than we deserve.
I’m not upset and scared anymore. I’m angry. Angry at the PA for behaving that way. Angry that my friends have also had to deal with similar experiences, and much worse. Angry at myself for not acting faster. Angry at being angry. Angry at the silence, which needs to be shattered. Angry that there are no guides or support resources to be easily found.
This is going to change.
Invisible
I’m part of a number of communities, groups in which I gain support where we have solidarity with each other because we share common issues. Those communities exist because of need very often because our needs are not met or recognised by society in general and we experience discrimination. Strangely, I have often experienced invisibility within two of my core communities while also failing to be recognised as Queer or disabled by people outside of those communities.
As a Femme Dyke and a person with so called ‘invisible’ disabilities I often go unrecognised both in my own communities and in larger society. In the Queer world people use the flawed term ‘passing’ to mean being perceived as heterosexual or cis-gendered. As a person with so called invisible disabilities I’m often told how well I look, I ‘pass’ momentarily. Sometimes invisibility can shield me from verbal attacks or physical danger aimed at queer or disabled people, but invisibility does not change who I am or the impairments I live with. Invisibility can be an erasing and undermining experience.
As a Femme Dyke and a gender queer person, I’ve been told ‘Never in a million years I would have dreamed you were gay’. Coming from another queer person that statement makes me wonder exactly what it is they expect to see? Meanwhile being invisible as queer in the ‘Straight’ world can be disorientating while providing glimpses of the casual homophobia that people engage in.
Years ago, when civil partnerships became legal for gay people, I remember going into a Newsagents; magazines were laid out on the counter one featuring a picture of Elton John’s big GAY wedding. As I paid for my purchases the owner of the store pointed to picture and asked ‘So what do you think of this?’ I assumed he was asking me because I was gay. My girlfriend of that time was standing next to me, the shop keeper nodded to her and said ‘Alright Geezer?’ I was wrong, he had assumed we were a straight couple! Pointing at the gay wedding picture again he said ‘I don’t think it’s right’. I replied icily ‘I’m gay and you are homophobic’.
Gay marriage beyond civil partnership did not become legal for a further nine years in 2013. When I was a teenager, in the country I grew up in it was illegal to be gay. Invisible or not I cannot forget these things.
In terms of chronic illness my invisibility has meant being denied treatment, I’ve been told by gatekeepers that there is ‘nothing wrong with me’ or that I am ‘not sick enough’, bullied and gaslit in a healthcare system where treatment is rationed. After living with Hep C for thirty years which hugely impacted my health I bought generics online, a cure I had not been able to access via the NHS.
Only recently has the publication of new NICE guidelines for ME/CFS removed graded exercise therapy and CBT as direct treatments. Perhaps now we might see a change in the attitudes of health care professionals who for decades implied that the illness was all in our minds. Those attitudes of denial lead me to doubt myself, to push beyond energy limits, to fail and think it was all my fault. Invisibility meant people in positions of power felt free to act as if I was asking for special treatment rather than reasonable adjustments. I’ve been sneered at for asking to use the lift, or asking for quieter environments so I can hear and focus on what is being said. Once when I was in a lot of pain and having difficulty finding a way to sit comfortably, I was stared at and asked if I’d ever had a real job!
My experiences as a Femme Dyke and as a person living with chronic health conditions both illustrate of how not fitting expectations – being invisible – can result in discrimination. As I write I find myself worrying that people will read this and think I’m making a fuss about nothing! Because invisibility often means being asked what I’m complaining about.
Fortunately, the other side of the equation is the communities of visibility I’ve found, those who share similar experiences to mine. That amazing feeling of recognition of not needing to explain feeling affirmed and as if other people really ‘get’ me. Communities of shared experience have nourished me, helped me to recognise my struggles as political and social issues. Helped me to learn skills, to value who I am, to celebrate and have fun together. The recognition and support of community has helped give me strength to fight harder in the outside world. To speak up against sexism, homophobia, transphobia, ableism, to advocate for my own care, to believe in my own voice and rights!
Finally, my complex experience as an ‘Invisible’ has given me perspective to be able to question assumptions, to think about what is recognised and validated. To consider community beyond visible categories. To feel sure that just as I’ve experienced discrimination and exclusion due to things that others don’t recognise, there must be things I too am not aware of. To ask myself what listening and patience I can practice to learn about others visible and invisible lives, and in doing so make society a richer and more accessible space.
Jet Moon is a multi-disciplinary artist who writes, performs and collaborates on fierce work for radical social change, creating intimate spaces of sharing, visibility and resistance. They are currently assembling an Artists Book from materials gathered as part of ‘Resilient and Resisting’ stories from people at the intersection of queerness, kink, disability, sex work and survivorship. You can find out more at the Resilient and Resisting website.
Abortion is a Disability Rights Issue
Maybe that instinct is perverse, but I think of it as asking for
a world in which a woman who doesn’t
have children is worth as much as a woman who does. [1]
I was born in the early `80s, while the World was changing its course, but it feels like life was easier, even though times were harder. You might say that life is always easier when you are a child, which is true, but disability changes the perspective. Being born with a genetic, congenital illness made me more attentive to the surrounding world since I was a kid. I was aware of my otherness, as I was taken from one specialist to another, searching for the answers about my condition. When kids were going to school, I was home-schooled. Rehabilitation has always been more important to my family, so everything had to be subordinated to this. Being surrounded by specialists, therapists and other patients, mostly adults, made me mature quicker. I was happy by myself, playing alone or with surrounding adults.
Growing up, I wasn’t much aware of my body changing, maturing. I was transforming into a teenager, my shapes were getting rounder. I still felt like my body wasn’t really connected to my mind, to my self. It wasn’t my identity. It was a body, that was handled by others — it was transferred, moved, turned, dressed, etc. Even during medical procedures, which required undressing, I wasn’t abashed. Like my body wasn’t truly mine. It was just an object my self was attached to, probably by accident. Nowadays, I’m more attached to my body, though it’s not a fixed connection and it’s usually connected to an erotic experience. Still, it’s my body and I decide how it should be treated.
I exactly remember the moment, when I’ve heard the news about the decision [2] of the Constitutional Tribunal of Poland. It was 22nd October of 2020 and I don’t think I’ve ever been so angry and disappointed in my life. I was angry because women were stripped of their laws. I was disappointed by the government, by the country. I’ve never been a supporter of the current government, but I hoped they have some decency left. Apparently, I was wrong.
Women all over the country went ballistic. It didn’t matter if they had a disability or not. That abortion ban has moved everyone. As a woman with a disability myself, I was shocked that anyone in their right mind can think that giving birth to a child with fatal defects is humane. I have never thought about having a child. I need a lot of help in my daily life, so adding a child to this equation would be too much. Adding a child to this world, where everything is falling apart, would be extremely selfish, too. My first reaction to the abortion law was a short text I’ve posted on my Facebook wall. I didn’t expect it will cause a reaction it did. My general point was that we, as women, need to have a choice. We are not empty vessels, which can carry any kind of foetus. We are human beings who can feel pain and emotions. I’ve also added that disfigured cluster of tissue is not a child, it’s just an alien growth in a woman’s body. What caused the greatest outrage, was a statement that I wouldn’t be surprised or angry if my mother had aborted me if she knew that I’ll be born with a genetic condition. At that time, she would be able to abort the pregnancy, even though we consider the `80s times of oppressive regime. How do we call the present government then? Not a democracy for sure.
Women with disabilities are treated as asexual beings. We have difficulty accessing medical care, especially gynaecological care. It’s not only about architectural inaccessibility, but also lack of willingness from the medical team. How can a woman with a disability have sex or be pregnant? That’s not how it should be. A lot of women are also too embarrassed to visit a doctor, considering they will need someone to help them before, during and after the medical exam. After all, our intimate parts and sexual life are the most private thing. Not being able to get regular exams is an act of violence. Not many people realise how harmful it is to neglect one’s health.
After a year of women fighting constantly with the government and pro-life activists, we get a possibility of new oppression. Proposed changes criminalise abortion and threaten both women and medical team with murder charges [3]. What kind of absurdity is this?
Not every woman wants to be a mother. Pushing women to become mothers, no matter the circumstances is a violence of the worst kind. No one will care about the actual child, which was born with an illness, birth defect or disability. It doesn’t matter its mother will be going through hell, without institutional support. Polish government cares more about the foetus, wasted sperm and eggs than a real human being. Woman with a disability can also give birth to a sick child. What if she didn’t want it? A women with a disability can be raped, taken advantage of, can be left alone. Pregnancy is not a walk in the park, it can be dangerous, in can be lethal. Does anyone care? No.
Violence and oppression have many faces. Being born as a woman with a disability puts you lower than others in society. Such a person is being oppressed right from the start. You have to fight your way through everything and prove yourself better than others. Poland has nothing to offer to you. You can go rot somewhere in a corner, because you were worth more as an unwanted, defective foetus than you are now, as an educated, tax-paying adult with a disability. We, women, won’t stop our fight until this situation will turn around and actual human being will be worth more than a ball of random cells. I hope this will happen one day and I’ll be still around to see it.
References
[1] Merrit Tierce, The Abortion I didn’t have, The New York Times Magazine, 02.12.2021 [2] To learn more, please read this article from the MS magazine [3] The project to criminalise abortion was rejected by the Parliament on the 3rd of December 2021, though it doesn’t mean we are safe.
Patrycja Polczyk is a social anthropologist, philosopher, researcher, woman with disability, and feminist. Patrycja is a published author of scholar papers and articles in mainstream media, with Disability Studies and Autoetnography as her main research interests. Her experience comes from studying, taking part in international Summer Schools and research projects. She is currently working in customer care, but trying to find time for personal passions – researching, traveling, reading and writing old-school paper letters.
On Assisted Dying
TLDR: Assisted Dying would put women, disabled women, and other marginalised groups at risk. We can do so much better, and deserve better.
In May 2021, Baroness Meacher proposed a bill that legalised assisting someone to end their life. As a feminist, and a disabled person, I oppose this.
As the law stands at the moment, doctors can’t kill people. They’d lose their right to practice medicine, and be tried through the criminal justice system. The Assisted Dying bill removes this, and creates a specific set of circumstances where doctors can take a life, if that person feels they no longer want to live.
Outside of these specific circumstances, a person who expressed that feeling to a medical professional would be offered access to appropriate mental health support. They would be listened to, and the aim would be to create a situation that allowed the person to feel that they can live the time that they can.
Some reading the above might snigger at my apparently rose-tinted view of how people are supported. Yes, I know that mental health services are under-funded and somewhat patchy in availability and quality. This on its own is an argument against Assisted Dying – we’re already failing some people who need mental health support, so offering someone that option after perhaps years of lack of access to appropriate mental health services is not kindness, but further negligence.
What are those specific circumstances described in the bill? At the moment, the person asking for assistance to die must have a terminal illness with a life expectancy of less than 6 months and must have the capacity to make that decision.
But who, in reality, would this impact?
Workers and family members
I’ve read arguments in favour of AD/AS which state that it would reduce the workload on women – female nurses, care workers, and family members who are more likely to be supporting the person with their needs, everything from fetching a glass of water to giving pain meds to organising finances.
In reality, legalising AD will not change the lives of these women, and to say that it will is to ignore what is needed.
Liveable wages and sick pay, access to training opportunities, and local solutions to the day-to-day issues faced in work are a must. Staff and families watching a loved one experience pain without access to a pain specialist will be drained by supporting someone through this situation, but the situation can be changed. Taking people’s pain seriously and making sure that availability of medication and discussion of options is smooth and consistent will change the situation.
This is just one factor we can improve by looking at what the problem is and ending it. The person’s life is not the problem.
Women and other marginalised groups, including disabled people
In places where AD is already legal, many factors interplay into what kind of treatment and services, and wider social experience, a person has access to, and what decision they will make.
A consistent factor in opting for AD is isolation. The presence of a high quality support network which does not melt away when needed is vital. (Maytal & Stern, 2006).
Unfortunately, consistent support is not automatically on tap, and women and other marginalised groups are more at risk of isolation.
A 2009 study looking at the rates of divorce for people diagnosed with MS or a brain tumour found that women were more likely to become divorced after diagnosis than men: six times more likely (Glantz et al., 2009).
The evaporation of support from family and friends is not solved by AD legislation. Making sure that the person has access to technology to keep in contact, along with access to practical and psychological support for both the person and their support network, can keep some ties from fraying. Employers can make time available through compassionate leave, or changes to working hours. The wider support network can assist with childcare, picking up essentials, and household maintenance. We can make space for people to be there.
More widely, groups that are already at higher risk of isolation need the barriers to building a reliable support network to be removed. -isms, -phobias, and hate have got to go. Respect, listening, allyship and change need to become “the norm”.
We can choose to say “There’s nothing more we can do”. But that’s a lie, and we deserve better.
Fleur Perry is a disabled campaigner and law student with focuses including accessible housing, independent living, and Human Rights. She is interested in representations of disability in media, and disability data as a tool for recording and creating change.
