Sisters of Frida CIC is an experimental collective of disabled women. We want a new way of sharing experiences, mutual support and relationships with different networks.
Sisters of Frida started at a meeting when we floated the idea of having a disabled women’s group. It took some time to come together – the co founders were Eleanor Lisney, Michelle Daley, Eleanor Firman, Maria Zedda, Svetlana Kotova, Frieda Van De Poll and Martine Miel. We became a CIC in 2014.
We are seeking to build a/or different networks of disabled women. The barriers and multiple discrimination have not changed, we struggle to have our voices heard as disabled women in our own rights.
We would like a sisterhood, a circle of disabled women to discuss, share experiences and explore intersectional possibilities.
It’s been sometime since we have had meetings – since the lockdown but as disabled people, we are still not confident about having face to face meetings and travelling on public transport.
At Sisters of Frida we decided to have a zoom meeting on Saturday 25th September at noon. It will be an event with a stimulating roundtable discussion with our international disabled sisters from around the world and then breakout sessions among you to discuss where you think SOF should be heading.
Virginia Ossana is disability and gender justice advocate. She is originally from Argentina and is currently based in Warwickshire, UK.
She works as a Communications and Programs Advisor at Women Enabled International, where she participates on a variety of projects to advance the rights of women and marginalized genders with disabilities around the world.
Carmen Yau won Spirit of Hong Kong in 2013 and few more awards afterwards as a recognition of her work for disabled people and the community. Carmen devotes herself to enhance social and workplace inclusion for disabled people by providing seminars and corporate training on disability confidence.
As a registered social worker, Carmenâs work varied from workplace inclusion to sexuality and LGBTQ disabled community. Besides lobbying more job opportunities for disabled people, Carmen is dedicated to enhancing professional development and leadership of disabled people. Carmen is the current Chairperson of Association of Women with Disabilities in Hong Kong.
Mali Hermans is a young Wiradjuri writer, organiser and community worker living on Ngunnawal and Ngambri land in Canberra, Australia. As a disabled woman, Mali is deeply invested in disability justice work, committed to challenging ableism and its intersections with colonialism, white supremacy, patriarchy and class. She has organising experience within grassroots community groups, feminist spaces and the union movement. Mali is a current Policy and Projects Officer at Women With Disabilities Australia (WWDA), having previously worked in gender-based violence prevention.
From the Sisters of Frida team
Rachel OâBrien is the Independent Living Campaigns Officer at Inclusion London after working at the National Union of Students as the Disabled Studentsâ Officer where she did work on movement building and political education, and campaigns around stopping the privatisation of the NHS and stopping and scrapping Universal Credit.
She is a director and a member of the SOF Steering Group.
Eleanor Lisney is a campaigner, founder member, public speaker. She is a director and a member of the SOF Steering Group.
She is an access advisor, an aspiring creative practitioner and co founder of Culture Access CIC, which is about supporting access, bringing an inclusive edge intersectionally.
Agenda for the event
12:00 (noon) Start with introduction to Sisters of Frida and speakers
12:05 Roundtable with guest speakers
12:25 Discussion and questions for panel
12:35 Questions from participants
12:40 Conclusions and thank you to guest speakers
12:45 Break (15 minutes)
13:00 Breakout rooms
What struck you about the roundtable discussion?
How does this connect with your involvement (current or future) with Sisters of Frida?
13:45 Comfort break (15 minutes)
14:00 Feedback and what next?
BSL interpreters from Signalise and live captioning will be available.
Music in the interval from Miss Jacqui with thanks for permission.
Thank you to Campaign Bootcamp who generously provided funding that allowed us to make this event accessible.
Sisters of Frida wants you to get involved! SoF has been working to build our capacity by working to make our processes more transparent and to help streamlined so build up disabled womenâs voices in all our magnificence. In order to do this we need to expand our steering group. Would you like to help steer the direction of Sisters of Frida? You will meet new people, learn and share new skill. If so, please send an email to firstname.lastname@example.org and we will send you more information.
The steering group is not the only way you can get involved. You can now join working groups and work on specific projects. If you are interested please get in touch at email@example.com
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..
The âDisabled Womenâs Perspectives on Independent Living During the Pandemicâ report provides an insight into the experiences of Disabled women during the Covid-19 pandemic. It introduces the ways in which policies pertaining to managing the pandemic by the government, local authorities and other bodies have affected Disabled womenâs ability to live independently. Our report provides Disabled women’s perspectives on a number of issues, such as: financial struggle, experiences of ableism in the employment sector, issues with local authorities and the social care system, getting the appropriate healthcare, struggles in accessing food and other household supplies, and importantly a stark deterioration in mental health.
These issues are a culmination of longstanding government policies which have been detrimental to Disabled womenâs lives from 2008 to now. For over a decade, we have witnessed the dismantling of services in the NHS and a reduction in local authority and social security provisions that have left Disabled people struggling, even prior to the pandemic. It further led to Disabled women being subjected to having our rights to independent living and dignity of life eroded. This was exacerbated during the pandemic and we received little to no support from services run by the NHS, local authorities and social security. The lack of information on basic health matters such as shielding and vaccination have caused a great deal of confusion and stress. Notwithstanding the eugenicist deaths of countless of Disabled people and people of colour, it is our view that our struggle and destitution could have been avoided.Â Â
Our briefing âThe Impact of COVID 19 on Disabled Women from Sisters of Fridaâ illustrates that most Disabled women are already on low income. We are more likely to provide domestic care, less likely to be employed, and are less financially independent. We also know that women do not all have the same life experiences and this needs to be reflected in policy making. For example, Disabled women of colour are disproportionately disadvantaged due to racism, disablism and sexism. Disabled lesbians face social exclusion from the LGBTQIA+ community and disability rights groups. While some data exists on some matters affecting Disabled women such as unemployment, intersecting identities such as race, class, sexuality and gender diversity are not taken into account. Therefore, when considering policy on disability issues, it is important that different Disabled womenâs experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.Â
Disabled people have equal rights to participate fully in all aspects of life. However, we are often obstructed by lack of access, ignorance and poor attitudes. This isnât simply an inconvenience for disabled people, it can be a matter of life or death.
Lack of access prevents us from having control over our lives and is a stark reminder to disabled people that our rights and our value as human beings can be so easily disregarded.
Accessible and inclusive environments for disabled people create a better experience for everyone. However, accessibility is rarely made standard unless non-disabled people recognise that it benefits them too â for example, dropped kerbs and step-free access that improves access for parents with prams, and the recent dramatic increase in subtitled videos online.
If disabled people are not expected and not thought about from the start, then the resulting design or format will exclude people who may wish to take part and have a right to do so.
Throughout the COVID 19 pandemic, disabled and non-disabled people alike, have increased their online communications, through a range of platforms. Accessible information and inclusive communication is important for everyone but it is especially vital for our independent living. It also makes it possible for us to chat, campaign and communicate with our peers, friends, family and colleagues, nationally and internationally.
This document provides information on disabled peopleâs rights and the action you can take to create accessible and inclusive information and events online. This is not an exhaustive guide but we have tried to add resources from around the world. There are many online platforms for events and meetings and we have not covered all these but reference some throughout.
In this toolkit, we added the importance of realising our rights as well as following the Social Model of Disability with the accessibility aspects. We hope it will be useful and do drop us a line if other information or tips can be added at firstname.lastname@example.org.
Disabled womenâs perspectives on Independent Living during the pandemic
6.30-8pm Friday 21st May 2021
We are pleased to announce the launch of our ground-breaking research into the long-term impacts of the COVID-19 pandemic on disabled women. Building on our briefing on disabled women and the pandemic, this research (funded by the Smallwood Trust and National Lottery Community Fund) will support us to create solutions and lobby for change. Through focus groups, it collects together a wide variety of intersectional disabled womenâs experiences and concerns, most of which are made invisible in policy-making and society. The aim is to support us to make independent living a reality for everyone.
Come to our webinar where we will be discussing our findings withÂ brilliant panellists : msunnia, Rachel O’Brien, Tumu Johnson, Dennis Queen and Martha Foulds. Dennis will also perform one of her songs for us.
msunnia is a queer crip feminist, with a background in campaigns and organising. msunnia is also the co-organiser of Criposium, a symposium on disability and intersectionality.
Rachel O’Brien is a member of the Sisters of Frida steering group. Her day job is doing public affairs for a Disabled People’s Organisation and campaigning to improve the rights of Disabled people. She is also a workplace rep for Unite the Union.
Martha Foulds is a disability rights activist living in Sheffield. She is currently a university student and helps co-ordinate the Sheffield Transgender Solidarity Network.
Mx Dennis Queen is a queer, disabled musician based in Manchester. She has been involved in the disabled people’s movement for 20+ years campaigning, performing and volunteering at disabled people’s organisations. As well as being a panelist, Dennis will perform a piece for us.
Tumu Johnson is a mental health worker and group facilitator with experience of working in front line support services, research and community organising. She is currently studying for a Masters in Mental Health Studies whilst working in the NHS and also provides freelance training around mental health and wellbeing.
Tumu, from the Sisters of Frida’s Steering Group, will be chairing the webinar.
This is a pilot project which was filmed / videoed pre pandemic in 2019 first presented by Culture Access at the Disabled and Proud Festival in Woolwich showcasing disability art and culture – a project in progress.
Building on the strong history of women’s activism, disabled women took taking photos of themselves/ or with help using smart phones to (re)create identities of themselves with selfies. Natasha Hirst took part and documented the women’s process and we created self-explanatory videos relating to their identities â as artists, as trade unionists, as activists, activists and journalists etc.
This is also a creative process that is inspired by Frida Kahlo’s work in her portrayal of impairment in identity.
***trigger warning*** medical and surgical trauma.
âMaking Space for Traumaâ 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 traumaâs. 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.
Charlie Fitz (she/her/they) is a sick and disabled artist, writer and medical humanities postgraduate. Her multiform projects explore experiences of illness, whilst aiming to resist and challenge the expectation that the ‘sick’ be patient or passive to medical paternalisms. She utilises photography, collage, digital and material forms in her work, exploring the boundaries between the creative, the academic and the activist. She is an exhibited artist and has had various written and visual work published in magazines, journals and zines. See and learn more about her work at:www.sickofbeingpatient.comTwitter @CharlieJLFitzInstagram @CharlieJLFitz
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 âfakingâ and âhas a friend who is writing an article about it.â
The âproofâ 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 canât always, but when we can, we post about it online because this is the life we want people to see us living. Because we canât 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 âgood daysâ 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 canât leave my bed, so Iâll have something to talk about while Iâm 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 peopleâs 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 friendsâ cars. When you take it into a mechanic, itâs never just the brake pads that need replacing, itâs always the discs. The mechanic seems a little baffled by your old-new car. Theyâre still happy to charge you, though.
You canât afford a new car, and you canât 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 donât 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 youâre a little baffled because you know how it runs, but they donât, 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 donât 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 donât have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driverâs side doors wonât 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.
Rachel Sharp is an author, activist, and lifetime member of the Somewhat Eccentric Persons Club. She lives with chronic illness, plays ukulele, and tries to save the planet