We are excited to announce we are starting a independent living project – on what it means to disabled women – with thanks to the Smallwood Trust and the National Lottery Community Fund
From January to March 2021, we will be focusing on asking disabled women on how they regard independent living, how they access it to help them achieve resilience through the pandemic and beyond. Are there solutions – how do we connect with each other for peer support and influence policy in bringing our voices together and forging a different future for ourselves.
We will have a webinar and focus groups using online platforms while there are constraints of COVID19 and using other accessible means of communication. We hope to have videos and will explore possibilities together.
Alice Armstrong (coordinator) and msunnia (researcher) will be working with us on this project.
Please do take part in this project as independent living is important to all of us as disabled women, whatever our impairment.
WOW Festival Sisters of Frida Panel: Power & Protest: Art, Activism and Disability Sunday 11th March, 11.30am â 12.30pm
Power & Protest: Art, Activism and Disability
Blue Bar, Level 4, Royal Festival Hall Sunday 11th March 11.30am â 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 womenâs voices.
Key note speaker – Nidhi Goyal – Comedian and activist working on diability and gender rights. Nidhi is the founder and director of âRising Flameâ 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 womenâs Executive Director, she sits on the advisory board of âVoiceâ and on the board of AWID (Assoc. for Womenâs Rights in Development).
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.
Nabihah 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.Â 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.
Lucy Sheenis 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.
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,Â which brought together 300 Independent Living activists from 19 countries in Brussels.
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,Â Anthea McIntyre MEP,Â Keith Taylor MEP,Â Molly Scott-Cato MEP,Â Wajid Khan MEP, andÂ 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 Wajid Khan MEP (Labour), Rebecca Farren, Lani Parker, Tara Flood and Michelle Daley (photo by Katai)
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.
dinner with other British attendees of Freedom Drive (photo by Debbie)
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 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.
Sophie Partridge left us last Monday – June 5th – it was unexpected and a shock to many of us who know her as friend, colleague, writer, performer and campaigner. In the video for Women Speak out, (as part of Sisters of Frida’s contribution to the Women Resource Centre’s ‘stories about everyday inequality’), she said she was a creative practitioner and she worked in the arts and that kind of ‘arty farty things’. But anyone who knows her know that she was being very unassuming there because she had achieved much in her career. Not to mention her campaign work for the Independent Living Fund before it closed.
Meeting with Alexia Manombe-Ncube, Deputy Minister of Disability Affairs, from Namibia
She was also one of Sisters of Frida’s Steering Group members. We will never forget how she was willing to pitch in and do whatever she can to help – even to the extent of hosting a steering group committee meeting in her home. She took part in the Disabled Women’s Voices from the Frontline reading her poem on LondonÂ (with Penny Pepper) and brought her mother with her because she was also due for a family event that day.
She shared her interests with intersectional issues with us by active participation in various events on gender, disability and sexuality, meeting with Lydia X.Z. Brown who came for the Women in the World Festival. She met with Alexia Manombe-Ncube Deputy Minister of Disability Affairs from Namibia, to talk about Independent Living in the UK and discuss best practice to follow.
Sophie was smart, articulateÂ andÂ superb at engaging and connecting with people from across differnt backgrounds. She contributed hugely to the work of Sisters of Frida and the Independent Living movement. Her legacy will be that she will continue to shape and influence the work of Sisters of Frida. Our condolences to her family and friends.
Some tributes from Sisters of Frida:
â”Sophie was a true campaigner and advocate for equality issues for Disabled People. She had a huge character which was well loved. She was one of the few campaigners that spoke out about intersectionality and it’s the relevance to disabled women particularly around the issues to achieve independent living. Her dedication and commitment to the work of Sisters of Frida will be missed.”
“Sophie was a powerhouse whose spirit and enthusiasm for life was infectious. I will miss her humour and her ability to make everyone feel at ease”
“So so sad to lose a amazing amazing talented funny caring and passionate colleague and someone I was just getting to know as a friend.”
“I cannot believe that we have lost a comrade, friend and fellow campaigner. I shall never forget the spark that is her and how she lit up the room when she joined us.”â
Sisters of Frida was asked to speak at an event hosted by Soraya Post MEP on Domestic violence against disabled people by the European Network of Independent Living (ENIL) on the 31st January 2017. Here is the speech from Eleanor Lisney ( a summarised version was given as the meeting ran out of time)
Having support for independent living is one of the fundamental needs of disabled people and the structural barriers of being able to exercise our rights is in our battles with social services, schools, higher education, housing, stigmas and discrimination and ableism.
with Nadia (ENIL), Eleanor (SOF), Freyja and Embla (TabĂș)
It seems right that we should meet with ENIL member before the eventÂ – Nadia Haddad and TabĂș ‘sÂ Embla ĂgĂșstsdĂłttir andÂ Freyja HaraldsdĂłttir for drinks to talk before the event.
Embla and Freyja were giving their testimonies on behalf ofÂ the next day on domestic violence against disabled people. Here is their speech for TabĂș.
It is clear that a new definition of domestic violence in itself will not solve the social situation of disabled women and end domestic violence against us. That does not change the fact that by redefining domestic violence legally and in policy can change, for the better, the practices of the police, legal system, social services and violence support networks. Changing the definition does not have to shadow the gender-based approach, it should enrich it. This should not have to exclude tackling of other forms of violence, e.g. institutional violence and hate crime. More so it could draw upon the multiple and concurrent forms of violence that should be beneficial to disabled women and service systems. It could deepen the understanding of which kind of violence affects or actuate other kinds of violence as well as offering a better ground to analyse how structures and cultures encourage and minimize abuse in the lives of disabled women.”
We also met up with all four of the Disabled Survivors Unite co-founders from the UK – Alice Kirkby, Ashley Stephens, Holly Scott-Gardner andÂ Bekki Smiddy. Here is their blog of the day with a audio recording and transcript. There was much appreciation of their testimonies.
Ana PelĂĄez, the Chair of the European Disability Forum (EDF) Womenâs Committee and a member of its Executive Committee spoke on the structual problems faced by disabled women and girls
So the first thing we need to say is that violence against women and girls with disabilities is structural violence that arises from the mere fact that when we talk about their specific situation they are not recognised as women or girls. This non-recognition means they are excluded from policies aimed at providing assistance and recovery for women victims of violence. (Another related topic is the accessibility of these services, but today we donât have time to go into this.)
A second structural aspect of violence against women and girls with disabilities is that in many cases they are victims of legal incapacitation which takes place due to their gender. This incapacitation is part of the process to enable these women to be subjected to forced sterilisation without their consent, or without their realising what is being done to them. This practise is another type of domestic violence in some ways, because it is the families who, in violation of the CRPD and even article 39 of the Istanbul Convention, choose to sterilise their daughters to protect them against unwanted pregnancies. I donât mean to blame the families; they are also victims of the healthcare system, which very often suggests this type of practise. Sterilising a woman means mutilating not only her reproductive capacity, but also her civil, political and economic rights. In addition, the only thing sterilisation achieves is to leave girls and women with disabilities even more exposed to sexual abuse and rape. Even worse, they are also unable to access justice to report the perpetrators or seek remedies, because they have been deprived of their legal capacity.
It was wonderful to meet Madelen LĂ¶w from We Rise Again (Sweden) who spoke her powerful testimony
Madelen LĂ¶w with Judith Ward UK MEP
People who were involved with the event spoke of their willingness to have further collaboration on the topic – we hope so! We will continue to follow the discussions. There was much mention of the Istanbul Convention that we hope will be ratified soon by the UK.
5th of May is independent living day. We celebrate with European Network on Independent Living (ENIL)Â . Some people would say to celebrate is difficult when we consider all the savage cuts, the decimation of services in the name of austerity and the closure of the Independent Living Fund here in the UK. But let’s celebrate because we continue to advocate for independent living as a right, Article 19 of the UN Convention of People with Â Disabilities (CRPD) here and with disabled people in the rest of Europe. And as disabled women.
Poppy HastedÂ has kindly agreed to let us reblog her, what she calls ‘adulting’ , we would say independent living and we share her enthusiasm for it.
Long Live AdultingâŠ.
I had such a lovely time last week. I got to be a grown-up, which doesnât happen very often, and it was so wonderful!
Confused? Let me explain.
As a severely disabled person there are many things I cannot do for myself. I canât walk. I canât get dressed by myself. I canât wash myself. I canât make a meal. I canât even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.
Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend, attended social events as and when I wanted to, did my own shopping, stayed up late if I felt like it, had a lie-in at the weekend and got to go away on short breaks if I fancied it. In other words, I had a lifestyle that was comparable with the lifestyles of my peers and the majority of the adult population of this country and most of the rest of the world. I was an adult who got to pick and choose what I wanted to do and I did adult things. In my family we call that adulting. I spent my life adulting.
Then I got sicker and things changed. The Multiple Sclerosis which has been part of my life for the past thirty years decided it was going to throw a spanner in the works and deteriorate. I wound up in hospital and, although I am a lot better than I was, things have had to change. For the last eighteen months, this has meant that I have had to have carers, or, as many disabled people prefer to call them, Personal Assistants. PAs. PAs coming into my home to attend to just about everything I need, every single day. Quite hard to come to terms with for an independent woman such as myself but I donât have an option. It is either PAs in my own house or live in residential accommodation away from my family with no independence whatsoever. No choice really, so PAs it has to be.
And thatâs the issue. For most of those eighteen months my PAs have come through an agency, paid for by Social Services. I have had little or no control over the care that I receive. I have not been able to say what I wanted done, when I wanted it done or how I wanted it done. I have had no choice at all. My âladiesâ, as we call them, show up every morning at 9am to wash me and get me ready for the day, make me breakfast and do a small amount of simple housework if they have the time. I have two ladies, for forty-five minutes each, to do everything. At lunchtime I get thirty minutes care from two more ladies when they make me something to eat and get me another cuppa and then, in the evening, another two ladies come at the horrifyingly late hour of 7pm, for forty five minutes each, to get me ready for the night and, if my children are out, warm up a ready meal for my supper. And that, until recently, was it. With a little careful negotiation I was able to make bedtime as late as, shock, horror, 8.30pm but only once a month, if I was lucky, as a special treat. Then about two months ago, I managed to get onto something called Direct Payments whereby Social Services give the money they are prepared to spend on my care package to me and I get to employ my own PAs to come when I want, and do what I want, and everything I feel is necessary, at a time that suits me.
And I am loving it!
I have got my life back! I get to choose who comes, when they come and what they do when they are here. I donât get to choose how long they are here for, Social Services still dictate how much time I get, but not when that time has to be. And this means that, if I want to stay out past around six-thirty in the evening, I can!
So, last Thursday, I did! I went out with some friends, to the pub, for food, alcohol, conversation and fun and I didnât have to get home for my evening care visit until the startlingly late hour, for me anyway, of ten-thirty. No watch-checking, no worrying, no rushing, no leaving the party long before the end, no having to act like a small child or a teenager with a curfew. I got to do some adulting again and I loved it. I have not enjoyed myself quite so much in a very long time.
And, now that I have discovered that life can be fun again, I want more. Adulting, in future, will have to have a much greater role in my life. I already have my next night out planned and Iâve only got a couple of weeks to go. After eighteen months of being treated like a very small child I can wait. But not for long.