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
Sisters of Fridaâs 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 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.
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 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.
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.
A âhuman catastropheâ â New UN condemnation for UK human rights record
The UK Governmentâs claim to be a âworld leader in disability issuesâ 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 governmentâs compliance with the Convention.
The Observations conclude last weekâs public examination of the UK Governmentâs record on delivering disabled peopleâs rights. The examination was declared by the UK rapporteur Mr Stig Langvad, to be âthe most challenging exercise in the history of the Committeeâ. Mr Langvad raised deep concerns on the UK Governmentâs failure to implement the rights of disabled people. He also noted the governmentâs âlack of recognition of the findings and recommendations of the (2016) Inquiryâ which found âgrave and systematic violations of disabled peopleâs human rightsâ.
Deaf and Disabled Peopleâs Organisations (DDPOs) were hailed as the genuine âworld leadersâ 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 Peopleâs Organisations has issued the following joint statement:
âToday the UN(CRPD) Committee has, once again, condemned the UK Governmentâs record on Deaf and Disabled Peopleâs 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. Â 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 Governmentâs 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 â
âThe 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 Committeeâs 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 âbest interestsâ defence for carers committing coercive and controlling abuse which the Government introduced without consulting us.â
Â Â Â 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.
Â Â Â Contributions were also received from Innovations in Dementia, HFT and Intersex NGO Coalition.
Â Â Â The committee postponed its assessment of the UK (originally due in 2015) to investigate a complaint of the violation of disabled peopleâs 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 peopleâs human rights. That investigation looked only at a part of the UN Convention on the Rights of Disabled People â 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.
Â Â Â 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 victimâs best interests and reasonable.
We call out the UK Government at the UN
I proudly joined other Deaf and Disabled People’s Organisations today at the UN in Geneva for the formal review of the Government’s implementation of the Convention of the Rights of People with Disabilities.
Sarah meets the Chairperson of the UNCRPD, Professor Theresia Degener
After months of collaboration with the other DPOs (including the Reclaiming our Futures Alliance of which we’re a member) we delivered our presentation today. Painfully we had to prioritise only a cluster of issues. I spoke on Art 13 (Access to Justice) and managed to raise our concerns about the defence to coercive abuse offences.
In the brief Q&A, pleasingly two members asked questions about disabled women and girls: 1) what cases are there of women having their children removed from them by social services and 2) tell us about Sarah Reed case.
We will be writing to these members with full responses.
I managed to observe some of Latvia’s session later in the day to see how our UK inquiry might look later this week. It was good to see more questions asked about disabled women and girls and, a robust and direct question requiring a response, from the Chairperson herself.
At this point there was a 15 minute break and I was fortunate enough to meet the Chairperson, Professor Theresia Degener for a coffee. She is the only woman on the Committee.
We discussed s76 Serious Crime Act and she confirmed she could see why we are concerned that the defence for carers to controlling abuse disproportionately puts disabled women and people with learning disabilities at risk. Lawyer to lawyer we looked at the subjective nature of this provision – i.e. It is sufficient for the perpetrator to believe the abuse was in the victim’s “best interests”, not an objective view.
We also discussed access to medical care (including reproductive and sexual health services) and the impact of welfare reform on disabled women.
Professor Degener was keen to take my papers with her, so fingers crossed, the issues are raised in the review.
Sarah preparing to present with DPO colleagues in the session
– Sarah Rennie, Steering Group
Zara Todd: I Will Not Settle
Zara Todd speaking at an event
Activist, educator, campaigner, feminist and disabled woman, all these terms are used to describe meÂ and I have been known use them to describe myself. Of course they are only a snapshot of the many identities and labels I have and they will continue to evolve over time. However of my identities, two identities tend to dominate people’s perception of what I should expect in life: disabled and woman.
I am, with all my being political (although I am decidedly non-partisan when it comes party politics) and I pride myself on being present and active in my world. Yet every day I get aÂ question or comment normally edged with surprise or admiration at the life I lead. Society doesn’t know what to do with me because I don’t conform to the boxes that have been created by society to understand the experience for disabled people. People expect my life to be less interesting than my non disabled peers and are shocked when it is as or more interesting than others my age. I enjoy my life and try and live it to the full but I experience many barriers in doing so and face exclusion frequently.
Despite the challenge my life and my achievements present to people’s perceptions, there is still a prevailing undercurrent in many of my interactions that I should settle for less or tolerate discrimination and inequality because I’m disabled.
I remember when I graduated from university a neighbour asked when was I getting a job at the local supermarket (I presume because that was the only place they’d seen disabled people employed). I don’t know whether I should just be grateful that they thought I could work or outraged that their expectations of me were so limited. There is nothing wrong with not working or working in a supermarket but there is something wrong with making assumptions about someone’s life choices without having a conversation with them.
I feel that as a disabled woman the expectation to settle is magnified because I am expected to settle as a woman as well as a disabled person. Traditionally society has framedÂ both women and disabled people as passive, this means that disabled women are often seen as the epitome of passive. Although we are rapidly challenging this on both grounds, I often get the feeling that I’m expected to be a bystander in life and not an actor and the barriers I experience accessing society are born out of this. For example I speak at conferences quite often and it is not unusual for me to have to speak from the conference floor or be lifted on to the stage. Although people normally apologise profusely, it leaves me feeling like I don’t belong there or that I should remember my place.
Frequently there is expectation that I should be grateful to settle and it’s not unknown for people get angry or put out when disabled people ask for more wheelchair spaces on buses are a great example. It’s almost like you can be here as long as it doesn’t affect me.
This leads me to wonder if this expected gratitude is driven by the unconscious belief that I and other disabled people have been allowed/tolerated in the mainstream party and we should fit in or shut up and accept whatever access we’ve been given. However it often leaves me feeling frustrated like I’m at a concert where I’ve discover most of the audience have access all areas passes and I’ve only been allowed through the door.
I attend a lot of events and conferences and often people go to great lengths to explain to me the access adjustments, whether they relate to my needs or not. While I am grateful for the thought I often feel conference organisers expect me to praise for doing the minimum. I celebrate and praise the conferences and events that embed access features without fanfare and share the information on available adjustments with everyone rather than treating accessible features as a secret that you have to look the part to access.Â Sometimes when accessing mainstream events I feel like some kind of pioneering explorer entering the unknown and I feel like I have to over appreciate when attempts at access are made out of fear that the organisers won’t even attempt to include disabled people in future if I don’t.
Even within spaces exploring oppression or rights on grounds other than disability I often feel I’m expected settle for partial participation because I can access most of something or the bits organisers see as important. This often leaves me compromising my safety and/or dignity to access social aspects of events because they tend to be the bits seen as add ons and optional extras. Unfortunately I see the social aspects of life as valuable as the professional because they are often the spaces I can show I’m human and make connections with people beyond professional curiosity.
For a long time I would make compromises without articulating what I was sacrificing to be included because I didn’t want to be seen as âthatâ person the party pooper, the moaning disabled person or the difficult one. However I realised recently that by hiding what being in inaccessible spaces costs me I was doing a disservice to other disabled people and future me who may not be able to make the compromises I currently can.
The pesky thing about exclusion is it is rarely visible, although this is not unique to disability.Â Â If someone is not there how do you know whether they are not there by choice or because they are experiencing barriers getting in the space. The exclusion of many oppressed groups is difficult to challenge because if someone is excluded how do they access you or vice versa to work through and remove the barriers.
I get the feeling that those with hidden impairments and access needs like child care have to compromise even more often thanÂ other groups because having visible needs initiates the conversation for you whereas those whose needs are less visible have the additional burden of deciding whether disclosure is worth it. When I am running events I try and create spaces where everyone is allowed to have and articulate needs. I do this by asking everyone what do you need to feel included and able to participate.
I currently have the privilege to chose how and when I compromise my safety, wellbeing and dignity to take part. What this means is in my work life particularly when accessing non disability spaces I now strangely settle more. Why? because even in the most conscious of spaces we are yet to get to the point where disabled people’s absence from spaces is consistently worthy of comment. If I’m in the room then I can raise it. People can see and feel the effort and energy I spend just getting into the room and maybe next time the next person won’t have to compromise so much.
In my private and social life I chose to compriseÂ my needs when the benefits of being present outweighs the compromises I need to make to be there. As I’ve got older and have been able to see the consequences of settling, my willingness to settle and compromise my needs has decreased. while this unwillingness to compromise my needs has lost me friends and caused me to miss things I generally have a better time now than I had when I settled for partial participation. What’s interesting though is people generally seem to expect me to settle more in my personal lifeÂ than elsewhere and I can’t work out if it’s because I’m disabled a woman or both. Although I suspect the expectation to compromise comes from the fact that in personal spaces decisions and actions are more traceable to individuals.
Although I compromise less in personal spaces I hide the personal impact of barriers more because I know that many of the barriers I experience are out of anyone’s control. My exception to this is attitudinal barriers because I can’t hide them and they cost me a lot. For example it is often assumed that the people that I hangout with are not my friends through choice but out of charity, kindness or cash. I would like to hope that my friends are there because they enjoy my company if not being me hopefully I’ve scared off anyone there for any other reason!Â However it has taken a long time to come to terms with the fact people might actually want to be my friend even with all of additional considerations that come with that.
For relationships once people get over the shock as a disabled woman I might want one. Most strangers assume I should/can only date a disabled person or worse I should jump at any non disabled person who shows me the slightest bit of interest regardless of how unsuitable they might be. Navigating this minefield is still something I’m not very good at.
Everything I do in life I do because we only have one life and I do not want regret not living the life I want because of others expectations. Yes there are still barriers and I have to settle like everyone does but I refuse to settle just because it is expected of me as a disabled woman. I hope that by being open about the decisions I make to have control over my life that I can support others to live their lives as they wish.
Weirdly I think settling is fine if you can live with what you get as a result but no one should feel obliged to.