Sisters of Frida Home

Bringing disabled women together, mobilising
and sharing through lived experiences

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 OssanaCarmen YauMali HermansRachel 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.

image of a twitter poll with question : Have you or another disabled person you know felt uncomfortable as a result of inappropriate touch by a care worker, PA, or carer?
81% voted yes, 19% voted no. Total 63 votes.

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 haveThe 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 is a wheelchair user. She has a ponytail, glasses, dangling. earrings and a rainbow zigzags black tee shirt.

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.

‘Disability, Gender, and The Environment’ on 24 March 2022 , 6pm GMT. 

Sisters of Frida and the National Council of Women of Great Britain are delighted to invite you to an informal discussion titled ‘Disability, Gender, and The Environment’ on 24 March 2022 at 6pm GMTWe will have BSL interpretation and captioning at the live event. 

For friends in different time zones, this converter may be of use: https://www.timezoneconverter.com/cgi-bin/tzc.tzc

Please sign up via Eventbrite here as we would love to stay in touch. Event details and registration can be found at this link.

Deaf and Disabled women need to be at the table discussing important issues, and the environment encapsulates several areas which deserve significant attention. 

Please get in touch if you have any further questions, or have difficulty with accessing the event. Contact email is hello@sisofrida.org.

blue background with light blue clouds at the top of the page. In bold font, it reads ‘Discussion’ with ’18:00 GMT (London) on Zoom’ underneath. Main title reads ‘Disability, Gender, and the Environment’ in slanted text. There is a blue and green image of the globe with an infographic in the centre of a wheelchair user in a pinstripe suit and a woman dancing. In slanted font, there is ‘24th March 2022’. Below, in bold white text, the main description reads: ‘Engaging with CSW66’s priority theme of climate change, environmental and disaster risk reduction, Sisters of Frida and the National Council of Women of Great Britain host an online discussion to consider how these matters affect Deaf and Disabled women. In this session, we welcome participants from all parts of the globe who have different lived experiences to share their perspectives and contribute to policy discussions around how Deaf and Disabled women are affected by green issues. Captioning and BSL interpretation are provided’.

Panelists

Black and white photo of an Indonesian woman with short hair, earrings, and a patterned dress, lying down on her front, pen in hand, ready to write. Picture credit: Derrick Kakembo.
Khairani Barokka

Khairani is a Minang-Javanese writer and artist from Jakarta, whose work has been presented widely internationally, and centres disability justice as anti colonial praxis. Among her honours, she has been Modern Poetry in Translation‘s Inaugural Poet-in-Residence, a UNFPA Indonesian Young Leader Driving Social Change, and Associate Artist at the National Centre for Writing (UK). Okka’s books include Indigenous Species (Tilted Axis) and Stairs and Whispers: D/deaf and Disabled Poets Write Back (as co-editor, Nine Arches). Her latest book is Ultimatum Orangutan (Nine Arches), shortlisted for the Barbellion Prize. A frequent public speaker, Okka’s most recent talk was on eco ableism, for Women of the World Festival 2022 at Royal Festival Hall.

An Asian woman with glasses, black top and a green patterned sari
Asha Hans

 Asha is former Professor of Political Science and Women’s Studies at Utkal University India. She is a recent Member Board UN Women’s Peace and Humanitarian Fund; Member Board Women Enabled International (USA). She is the founder of SMRC a disability organisation  and Women with Disabilities India Network. She has worked with CEDAW and UNCRPD Committee on women with disabilities in India.

Her recent books are 

2021  Engendering Climate Change Learnings from South Asia 

2020 Asha Hans Disability, gender, and the trajectories of power (Japanese edition) by Asha Hans, 

Forthcoming 2022 Forthcoming Disability and Climate Change 

Young Filipino woman with light top top.
Rhine Bernardino

Rhine is an artist, independent curator and researcher with a background in filmmaking. They hold an MA Fine Art degree (Sculpture) from the Royal College of Art, for which they were awarded the highly-regarded Abraaj-RCA Innovation Scholarship. Rhine has curated and exhibited their artwork internationally especially in Europe and Asia. They have been invited to take part in several international art residencies and programmes most recently as part of the Australia Arts Council’s Future Leaders Programme, Office of Contemporary Art (OCA) Norway’s International Visitors Programme and Tokyo Arts and Space (TOKAS) research residency in Japan. They have been doing extensive field research and mapping of art collectives, alternative spaces and community-based projects across the globe. In building on this work, they have been looking at a myriad of possibilities of working with communities through art practice in driving societal change and highlighting marginalised voices. 

Harrie Larrington-Spencer

Harrie is a researcher in Healthy Active Cities at the University of Salford and has just submitted her PhD in human geography at the University of Manchester. Harrie’s research and personal interests focus upon sustainability and inclusive active travel and ensuring that the needs of disabled people are centralised within environmentalism. Harrie is a disabled cyclist and (along with her dog Frida) uses social media to demonstrate how brilliant and inclusive cycling can be, as well as highlighting the specific barriers that disabled cyclists face in their everyday travels. Harrie has recently been recognised as one of the Shaw Trust’s Disability Power 100 for her work and activism.

Carmen is an East Asian woman. She has long black hair tied back in a pony tail. She is wearing glasses and a blue top.
Carmen Yau

Carmen Yau (Chair) is currently a Lecturer in Social Work at the University of Greenwich. As a multi-award-winning Disability x Gender advocate in Asia, Carmen is dedicated to enhancing equality and inclusion for people with disabilities and intersectional women. She touches a range of topics from accessibility and universal design, sexuality and LGBTQ, interpersonal violence, physical and mental health.

As a social work practitioner, Carmen is interested in narrative practice and digital storytelling. She commits to bridge social work theories and practice to the digital era. She explores potential social work practice in the information communication technology context.

NCW logo

Videos: Impact of Covid19 on independent living on disabled women

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

Recording: Disabled women’s perspectives on Independent Living during the pandemic

The recording of the webinar is here.

YouTube video of Sisters of Frida’s report launch

Here is the

transcript : webinar launch

The report is here

Report: Disabled women’s perspectives on Independent Living during the pandemic

EXECUTIVE SUMMARY

Introduction

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. 


See the full report as a Word doc or a PDF

Sisters of Frida’s Guide to Accessible Online communication – a Toolkit

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.

The toolkit is available here as a Word document

Sisters of Frida’s Guide to Accessible Online communication – a Toolkit

and as a PDF

Sisters of Frida’s Guide to Accessible Online communication – a Toolkit

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.

Directions to Greenwich Yacht club from North Greenwich station

Venue for Sisters of Frida celebratory event is

Greenwich Yacht Club

1 Peartree Way, Greenwich, London SE10 0BW
Nearest tube (accessible) North Greenwich on the Jubilee Line

map

Map from North Greenwich station to GYC

You can take buses one stop (Millenium Village/Oval Square) from the tube station to the venue
any of these buses stop outside the shops and there is a walk of about 5 mins to the venue
buses 472 (Thamesmead),
161 (Chistlehurst WM),
132 (Bexleyheath shopping Centre),
108 (Lewisham Mkt),
129 (Greenwich)
Bus 188 goes to Russell Sq and comes to North Greenwich Station.
Bus 129 from Greenwich
there is parking on site on Pear Tree way – let us know if you need parking.
or you can walk maximum 17 mins from the station
Coming out of the lift or elevator, turn left towards Nero at the back of the station

turn left towards the back of the station

towards direction of the 02

turn right

turn right after Tescos express

follow the road

go past the Pilot pub

turn left at the nursery

 

 

coss the bridge and the GYC is on the left.

coss the bridge and the GYC is on the left.

WOW Festival Sisters of Frida Panel: Power & Protest: Art, Activism and Disability Sunday 11th March, 11.30am – 12.30pm

Power & Protest: Art, Activism and Disability

Blue Bar, Level 4, Royal Festival Hall
Sunday 11th March 11.30am – 12.30pm

From leadership on human rights to artwork informed by the politics of disability, disabled women are at the forefront of global grassroots activism. Come hear why any campaign for gender equality must include disabled women’s voices.

Asian woman wearing a white top, her hands are up in mid air in gesticulation.Key note speaker – Nidhi Goyal – Comedian and activist working on diability and gender rights. Nidhi is the founder and director of ‘Rising Flame’ a Mumbai based NGO working for disabled women and youth and is also the Sexuality and Disability Program Director at Mumbai-based non-profit Point of View. Appointed to the prestigious civil society advisory group of UN women’s Executive Director, she sits on the advisory board of “Voice” and on the board of AWID (Assoc. for Women’s Rights in Development).

 

white woman with hair tied back and sun glasses. she has a colourful scarf.Michelle Baharier is chairing this panel .

Alumni/Fellow of the Slade School of Fine Art and winner of the Julian Sullivan award, graduate of the School of Social Entrepreneurs and the University of the Arts.

She is a practicing visual/ performance Artist working with communities to make collective art works, exhibitions, public pieces and performance.

 

 

smiling woman in a red hijabNabihah Islam is a published poet and has worked alongside various theatres. Her short play, ‘Home is where the heart is‘ was performed at Theatre Deli and she recently brought the British Council’s Hijabi Monologues to the Bush Theatre. She is a British Council Fellow and worked alongside the Council of Europe as a human rights activist addressing gender violence in South Asian communities and advocating for gender rights. She co-founded two development organisations, both are recognised by the British Council as emerging organisations. Nabihah is completing her Masters in Creative Writing at Brasenose College, Oxford.

black and white photograph of an East Asian women looking to her right

Lucy Sheen is an actor, published writer, transracial adoptee and advocate for British East Asian artists and adoptee rights. Her play Under A Blood Red Moon was recently one of eight plays written by British East Asian playwrights to have been published by Oberon Books and the first anthology ever to be published in the UK of British East Asian Playwrights.

In 2015 she was one for four BAME writer|performers who presented work created under the RePlay bursary who performed an extract of about 20mins as part of Poetry International 2015.

white woman with dark curly hair looking at the camera with a slight smial

Jess Thom is a writer, performer and activist who co-founded Touretteshero in 2010 as a creative response to her experiences of life with Tourettes Syndrome. She has performed nationally and internationally, written a book, Welcome to Biscuit Land, and worked with museums, galleries and theatres to host large scale events for disabled and non-disabled children and young people

Sisters of Frida at Brussels ENIL Freedom Drive

Some Sisters of Frida went to ENIL 2017 Freedom Drive,  which brought together 300 Independent Living activists from 19 countries in Brussels.

Sisters of Frida behind the banner which says Sisters of Frida, Disabled Women's Collective. They are all wearing read teeshirts. Four wheelchair users.

Zara Todd, Lani Parker, Michelle Daley and Eleanor Lisney, and Rachel O’Brien (photo by Mladen Spremo)

It brought an an end to a week of promoting independent living, peer support, protest and celebration of disability rights. The Freedom Drive has brought together around 300 independent living activists from 19 countries, from as far East as Albania, to Norway in the North.

Among the main Freedom Drive demands were the end to institutionalisation of disabled people across Europe, access to personal assistance in all countries, full implementation of the UN Convention on the Rights of Persons with Disabilities and the end to cuts to support services and benefits for disabled people.

Lani Parker and Michelle Daley said:

 

We also met some MEPs, Anthea McIntyre MEP, Keith Taylor MEP, Molly Scott-Cato MEP, Wajid Khan MEP, and Daniel Dalton MEP, among others to ask them questions on independent living, accessibility, inclusive education, disability rights after Brexit, freedom of labour as part of the EU among other issues.

with man in a squatting position, 3 women wheelchair users and one woman in front.

with Wajid Khan MEP (Labour), Rebecca Farren, Lani Parker, Tara Flood and Michelle Daley (photo by Katai)

2 wheelchair users (one  black woman and one white) at either end. 3 people on sofa, all white, one man 2 women)

Tweet from Molly Scott Cato MEP with Michelle Daley, (Green Party) Keith Taylor MEP, Molly Scott Cato MEP, Tara Flood and Lani Parker

The night before the march we met up with other British attendees for dinner, including Sarah Rennie (Sisters of Frida, Steering Group member) , who had to leave before the march.

People seated at table at restaurant

dinner with other British attendees of Freedom Drive (photo by Debbie)

people at dinner table at restaurant

dinner with other British attendees of Freedom Drive (2nd table) (photo by Debbie)

We were outside the European Parliament the next day to join the other ENIL Freedom marchers on the streets of Brussels.

Michelle (wearing the red tee ENIL teeshirt) with her hand raised up in a fist leading some of the procession

Michelle Daley leading some of the way. (photo by Katai)

Thank you all for all who came with us. Thank you for ENIL to organising this and we wish Zara Todd, as incoming director, the best for the future.

More photos at Sisters of Frida Flickr account.

A ‘human catastrophe’ – New UN condemnation for UK human rights record

The UK Government’s claim to be a ‘world leader in disability issues’ has today been crushed by the UN Committee on the Rights of Persons with Disabilities. The Committee has released damning Concluding Observations on the UK, following its first Review of the government’s compliance with the Convention.

The Observations conclude last week’s public examination of the UK Government’s record on delivering disabled people’s rights. The examination was declared by the UK rapporteur Mr Stig Langvad, to be “the most challenging exercise in the history of the Committee”. Mr Langvad raised deep concerns on the UK Government’s failure to implement the rights of disabled people. He also noted the government’s “lack of recognition of the findings and recommendations of the (2016) Inquiry” which found ‘grave and systematic violations of disabled people’s human rights’.

Deaf and Disabled People’s Organisations (DDPOs) were hailed as the genuine “world leaders” for their efforts in bringing to light the injustices and human rights violations inflicted on disabled people in the UK.

The UK Delegation of Deaf and Disabled People’s Organisations has issued the following joint statement:

“Today the UN(CRPD) Committee has, once again, condemned the UK Government’s record on Deaf and Disabled People’s human rights. They have validated the desperation, frustration and outrage experienced by Deaf and Disabled people since austerity and welfare cuts began. It is no longer acceptable for the UK Government to ignore the strong and united message of the disability community.

UK Government representatives committed during the review to rethinking the way they support Deaf and Disabled People to monitor our rights. We welcome this commitment.  However, we are clear that our involvement must be genuine and inclusive and that we cannot accept anything less than progress on delivering the human rights enshrined in the Convention, and denied us for too long.

DDPOs have established themselves as a force to be reckoned with following a long campaign of challenging the Government’s blatant disregard for the lives of Deaf and disabled people in the UK. The unity and solidarity demonstrated by the Committee and the UK Independent Mechanism in supporting our calls for justice continue to strengthen us.

Michelle Daley, a Director of Sisters of Frida, said –

“The rights of disabled women and girls have not been systematically mainstreamed in the UK. The UN is obviously recognising this.

The proper collection of disaggregated data has been repeatedly called for by UN rapporteurs. Gaps in data mask the multiple discrimination faced by disabled women.

We welcome the Committee’s recommendation that the State allocates resources to support representative organisations for disabled women and girls and secure our strategic involvement and contributions in legislation. Perhaps this would, in future, avoid abhorrent situations like the ‘best interests’ defence for carers committing coercive and controlling abuse which the Government introduced without consulting us.”

Notes to editors:

  •     The Concluding Observations are published on the Committee’s webpage (UK section) : http://tbinternet.ohchr.org/_layouts/treatybodyexternal/SessionDetails1.aspx?SessionID=1158&Lang=en
  •     DDPOs across the UK have worked in coproduction to collect evidence and compile the reports through the Review process. The delegation of DDPOs present in Geneva w/c 21st August 2017 included Disability Rights UK, Inclusion Scotland, Disability Wales, Disability Action Northern Ireland, the Reclaiming our Futures Alliance, British Deaf Association, People First Scotland, Alliance for Inclusive Education, Inclusion London, Disabled People Against Cuts, Equal Lives, Black Triangle, Sisters of Frida, Black Mental Health UK.
  •     Contributions were also received from Innovations in Dementia, HFT and Intersex NGO Coalition.
  •     On 23rd and 24th August the examination of the UK Government took place in Geneva, with the UN Committee on the Rights of Disabled People. The report of the dialogue can be found here, with links to submission documents: http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21993&LangID=E
  •     The committee postponed its assessment of the UK (originally due in 2015) to investigate a complaint of the violation of disabled people’s rights as a result of welfare reform. This was brought under the optional protocol of the Convention. The findings expressed concern of grave and systematic violations of disabled people’s human rights. That investigation looked only at a part of the UN Convention on the Rights of Disabled People – with a particular focus on the impact of austerity measures and welfare reform. The Review looked at a much wider set of issues, including our laws on mental health and mental capacity, policies on employment and education and more.

Inquiry report, 2016: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/InquiryProcedure.aspx

  •     A lay person’s guide to the Review process and Examination can be found here: www.disabilitywales.org/crpd17
  •     Statistics about disabled women: https://www.sisofrida.org/resources/disabled-women-facts-and-stats/
  •     Section 76 of the Serious Crime Act 2015 created a new offence of controlling or coercive behaviour in an intimate or family relationship. It is a defence for accused abusers to show that they believe their behaviour was in the victim’s best interests and reasonable.