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, Carmen’s 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 O’Brien is the Independent Living Campaigns Officer at Inclusion London after working at the National Union of Students as the Disabled Students’ 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
Questions
What struck you about the roundtable discussion?
How does this connect with your involvement (current or future) with Sisters of Frida?
13:45 Comfort break (15 minutes)
14:00 Feedback and what next?
14:30 End
BSL interpreters from Signalise and live captioning will be available.
Music in the interval from Miss Jacqui with thanks for permission.
Thank you to Campaign Bootcamp who generously provided funding that allowed us to make this event accessible.
Useful information
Sisters of Frida wants you to get involved! SoF has been working to build our capacity by working to make our processes more transparent and to help streamlined so build up disabled women’s voices in all our magnificence. In order to do this we need to expand our steering group. Would you like to help steer the direction of Sisters of Frida? You will meet new people, learn and share new skill. If so, please send an email to sisofrida@gmail.com and we will send you more information.
The steering group is not the only way you can get involved. You can now join working groups and work on specific projects. If you are interested please get in touch at sisofrida@gmail.com
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..
Edited video of the Impact of Covid19 on independent living : Disabled women’s voices. Edited by Leonore Schick. Featuring Jumoke, Sarah, Rebecca, Sarifa, Eleanor, Anahita, Rachel and Michelle.
Jumoke A. Young Black woman with head covering and a dark blue top
Sarah R. A white woman with short hair and a pink top with black motifs
Rebecca B. A white woman with brown rimmed glasses and white headband
Sarifa P. A South Asian woman with headwear and glasses
Eleanor L. East Asian woman with short grey and black hair with black rimmed glasses and a grey hoodie.
AnahitaH. A young woman with short hair and dark top
Michelle B. A white, blonde haired woman with headphones, round glasses with a bright psychedelic backdrop
The ‘Disabled Women’s Perspectives on Independent Living During the Pandemic’ 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 women’s 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 women’s 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.
Our briefing ‘The Impact of COVID 19 on Disabled Women from Sisters of Frida’ illustrates that most Disabled women are already on low income. We are more likely to provide domestic care, less likely to be employed, and are less financially independent. We also know that women do not all have the same life experiences and this needs to be reflected in policy making. For example, Disabled women of colour are disproportionately disadvantaged due to racism, disablism and sexism. Disabled lesbians face social exclusion from the LGBTQIA+ community and disability rights groups. While some data exists on some matters affecting Disabled women such as unemployment, intersecting identities such as race, class, sexuality and gender diversity are not taken into account. Therefore, when considering policy on disability issues, it is important that different Disabled women’s experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.
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 isn’t 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 – 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.
Screenshot of an online meeting using Google Meet by International Network of Women with Disabilities with live captioning. Participants were from Mexico, Australia, USA and UK. Description: 5 women in an online platform, text from the close caption reads Tricia Malowney ” bit. We share the load a little bit and if we can just keep chipping away so we can convince the feminist movement. That we are part of their community. We are not an add-on that everything that they do..”
This document provides information on disabled people’s 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 hello@sisofrida.org.
We thank London Community Foundation for the funding to make this possible. And Dr Natasha Hirst @HirstPhotos and Eleanor Lisney @e_lisney for researching and writing this toolkit.
Disabled women’s 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 women’s 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 with brilliant panellists : msunnia, Rachel O’Brien, Tumu Johnson, Dennis Queen and Martha Foulds. Dennis will also perform one of her songs for us.
Panelists
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 – 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.
Pilot project by Natasha Hirst and Eleanor Lisney .
***trigger warning*** medical and surgical trauma.
‘Making Space for Trauma’ is an ongoing series of digital collages and drawings, in which I use both found and personal images to re-contextualise recent medical traumas. This is a process I have found necessary to make space for and work through these trauma’s. In my experience as a young women with a chronic and rare condition and a history of medically documented trauma I have been frequently gaslight by medical professionals and having a history of trauma has often stood in the way of an accurate diagnosis and adequate care. On the flip side of this the trauma of not being believed, of being sick and of having to fight so hard for medical care has been completely overlooked by Western biomedical institutes which have not taken account of how traumatising being a patient can be.
Passive Power Description: Striking contrast of black and white picture of 6 seated women with white nurses’ caps and white uniforms , one in a darker uniform. There is one suited man seated with crossed arms. None of the faces are visible . The only colour is provided by the view from an open window displaying a vibrant sky with a twirl of colours.ICU description: Black background with a multitude of bright lights (space) with random 4 bigger white lights. A floating (female) face in shades of (milk chocolate) brown, a tube is attached to the nose. It falls down in a wide twist with 2 pennant like attached.Its a struggle sometime… description: Dark background with mauvish overtones in space, gets brighter under the curled up female form curled up with a red cloth with knees drawn up. She has a black vest and black undergarment. Her feet touch on seemingly, a blue gleaming crystal. Her head is on 2 red pillows.Mr Surgeon description: 3 figures in dark green surgical costumes. They are bending over, one with a scalpel in hand. Only the person in the middle has a face, the other 2 faces are integrated into the background – a dark mauvish space with small dots. A circle hangs like a light on the operating table but it has a white marble sheen with blood colour streaks. The person in the middle has the only face, bespectacled with a mask.Making space for trauma description: figure in a stretcher covered with white sheet, arms and face is hollowed out as space.. There are tubes attached and a breathing tube.
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 “faking” and “has a friend who is writing an article about it.”
The “proof” that my friend is faking their illness? Sometimes they stand up to take selfies. Sometimes they go to see a band. They have tattoos even though EDS affects the skin.
In short, they do things that most people with EDS do, when we can. We can’t always, but when we can, we post about it online because this is the life we want people to see us living. Because we can’t tweet about our aches and dislocations and accessibility nightmares all day. No one would want to be friends if we did that, and we know it. So we cultivate carefully, and try to show as many “good days” as possible, even if a good day only lasts three minutes.
Sometimes I save pictures and stories instead of posting them right away. I wait for a day when I can’t leave my bed, so I’ll have something to talk about while I’m applying ice packs and heating pads and medications. The pressure to seem normal and fun is enormous. I am working with fewer materials than most.
If you go around trying to poke holes in people’s stories of medical journeys, thinking that you know what life is like for them and how it should look on the outside, I want you to imagine something for me.
Imagine you got a car for your eighteenth birthday.
The car looks good, but it has some problems. Sometimes the A/C quits. Sometimes it stalls. It pretty much always shudders and knocks, but you and your friends all get used to that. You hardly notice it anymore. Over time, though, you start to think that somebody rolled back the odometer on this beast; it seems to have more frequent and serious problems than your friends’ cars. When you take it into a mechanic, it’s never just the brake pads that need replacing, it’s always the discs. The mechanic seems a little baffled by your old-new car. They’re still happy to charge you, though.
You can’t afford a new car, and you can’t really afford to keep taking this one into the shop, either, so you go through a lot of duct tape and Bondo. You learn to do some work on it yourself, even though you don’t have all the tools. You spend a lot of time washing it and touching up paint to make it look presentable. Once in a while, someone compliments you on it, and you’re a little baffled because you know how it runs, but they don’t, so you smile and thank them.
At some point, you decide that even though your car is unreliable, you want to take a trip out of town. It breaks down in the driveway. You stay home and don’t mention your disappointment to anyone.
When you take it back to the mechanic, he says things are getting worse and will be even more expensive to fix now, but you don’t have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driver’s side doors won’t lock and sometimes it breaks down for no reason.
Now imagine you can never get out of the car.
There is never a reason to interrogate a stranger about their disability.
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
