Pain Drawings etc
Flying high with my flock
It came as such a shock
The engines all misfired
My vitality expired
And down I went
I tried hard to recover
as I plummeted at speed
towards a world that couldn’t quilt me
in my time of need
I wish that I could whiffle
with a lapwing’s landing flair
Manoeuvres would have saved me
in a torsion through the air
But I’m not a bird possessing skills
and wings to get me by
Just a woman trapped within one room
Wishing she could fly
looming above my bed
Poised and in position
with a blanket made of lead
One wrong move and they descend
locking into place ‚Äď
to render me immobile
with pain etched on my face
One on my diaphragm
Two on my thighs
Two on my shoulders
Two on my eyes
Paula is the author of the graphic memoir The Facts of Life (Myriad, 2017) and three children‚Äôs books. Since becoming disabled and bedridden with energy impairment and pain conditions, she keeps a bedbound diary and writes poetry with the aid of voice recording. This work explores chronic illness as well as the natural world and her exile from it.¬†¬†www.paulaknight.co.uk
This is part of the Sister Stories series.
At UN CEDAW review in Geneva
¬†On the last week of February, two Sisters of Frida, Rachel O’ Brien and Eleanor Lisney joined other women NGOs for the review of UK government on CEDAW –¬†The Convention on the Elimination of all forms of Discrimination Against Women,¬† often referred to as the ‚Äėwomen‚Äôs bill of rights‚Äô, and it spells out women‚Äôs right to equality and non-discrimination. They were funded by the EHRC to attend the examination.
They met with Ana Pel√°ez Narv√°ez, the only disabled woman on the committee and they spoke on the needs of disabled women and the importance of CEDAW.
Before the event, Eleanor was in the core group steering group in the shadow report prepared by the Women Resource Centre for England (see the shadow reports). We also did our own Shadow Report supported by Women Enabled International and met with Amanda McRae while they were in Geneva.
Ana Pel√°ez Narv√°ez meeting with Rachel and Eleanor from SOF, Janet Veitch, Viv Hayes from WRC and Amanda McRae from Women Enabled International.
Rachel and Eleanor with other delegates from Women NGOs
Rachel speaking to the CEDAW committee
Directions to Greenwich Yacht club from North Greenwich station
Venue for Sisters of Frida celebratory event is
Greenwich Yacht Club
WOW Festival Sisters of Frida Panel: Power & Protest: Art, Activism and Disability Sunday 11th March, 11.30am ‚Äď 12.30pm
Power & Protest: Art, Activism and Disability
Blue Bar, Level 4, Royal Festival Hall
Sunday 11th March 11.30am ‚Äď 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‚Äôs voices.
Key note speaker – Nidhi Goyal – Comedian and activist working on diability and gender rights. Nidhi is the founder and director of ‚ÄėRising Flame‚Äô 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‚Äôs Executive Director, she sits on the advisory board of ‚ÄúVoice‚ÄĚ and on the board of AWID (Assoc. for Women‚Äôs Rights in Development).
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.¬†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 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.
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.
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.
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.
We were outside the European Parliament the next day to join the other ENIL Freedom marchers on the streets of Brussels.
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 ‚Äėhuman catastrophe‚Äô ‚Äď New UN condemnation for UK human rights record
The UK Government‚Äôs claim to be a ‚Äėworld leader in disability issues‚Äô 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‚Äôs compliance with the Convention.
The Observations conclude last week‚Äôs public examination of the UK Government‚Äôs record on delivering disabled people‚Äôs rights. The examination was declared by the UK rapporteur Mr Stig Langvad, to be ‚Äúthe most challenging exercise in the history of the Committee‚ÄĚ. Mr Langvad raised deep concerns on the UK Government‚Äôs failure to implement the rights of disabled people. He also noted the government‚Äôs ‚Äúlack of recognition of the findings and recommendations of the (2016) Inquiry‚ÄĚ which found ‚Äėgrave and systematic violations of disabled people‚Äôs human rights‚Äô.
Deaf and Disabled People‚Äôs Organisations (DDPOs) were hailed as the genuine ‚Äúworld leaders‚ÄĚ 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‚Äôs Organisations has issued the following joint statement:
‚ÄúToday the UN(CRPD) Committee has, once again, condemned the UK Government‚Äôs record on Deaf and Disabled People‚Äôs 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‚Äôs 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 ‚Äď
‚ÄúThe 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‚Äôs 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 ‚Äėbest interests‚Äô defence for carers committing coercive and controlling abuse which the Government introduced without consulting us.‚ÄĚ
Notes to editors:
- ¬†¬†¬† The Concluding Observations are published on the Committee‚Äôs 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‚Äôs 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‚Äôs human rights. That investigation looked only at a part of the UN Convention on the Rights of Disabled People ‚Äď 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‚Äôs guide to the Review process and Examination can be found here: www.disabilitywales.org/crpd17
- ¬†¬†¬† Statistics about disabled women: http://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‚Äôs 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.
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 Rennie, Steering Group
Zara Todd: I Will Not Settle
Activist, educator, campaigner, feminist and disabled woman, all these terms are used to describe me¬† 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 a¬† 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 framed¬† 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.¬† 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 ‚Äėthat‚Äô 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.¬†¬† 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 than¬† 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 comprise¬† 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 life¬† 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!¬† 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.
Zara Todd is a Sisters of Frida’s director.
In memory of Eleanor Firman
We are very sorry to learn that Eleanor Firman, a strong activist in East London, died last weekend. She was passionate about housing, peace, benefits, but anti racism and disability rights were her biggest concerns. Her death was sudden and unexpected. She had attended a fund raising dinner on Saturday night and was reported to be on good form.
Eleanor was also a founding member of Sisters of Frida and served on the Steering Group. She attended a meeting in Strasbourg for us at a European Parliament Disability Intergroup and then to Geneva as part of the CEDAW working Group coordinated by the Women Resource Centre in 2013. A committed advocate for women‚Äôs and disability rights, she was in the Women Against the Cuts and also a Disabled People Against Cuts member. She was in Left Unity Disabled Member‚Äôs Caucus for some time. She had wanted to be a Labour councillor in her ward.
We send our utmost sympathy to her partner Gerry, and her family, brother, Richard, her father , Peter, neice Jess and all her friends.
She is a great loss to all of us. We will miss her warmth, her passion, creativity and friendship. She never failed to help and stood up for what she saw as injustice ‚Äď even when it is at a cost to herself.
written by Eleanor Lisney
Added information for the AGM 25th March Sat from 12 noon
Please note new time, although the AGM starts at 1pm as seen from previous post , you are welcomed to get there before. Blackfriars Settlement has an excellent cafe with reasonable prices for lunch or snacks.
Please register at eventbrite
Please also have a look at these documents
We are asking for your ideas, opinions as to how you want Sisters of Frida to plan a strategy for going ahead.
Here is the agenda for the day
Sisters of Frida Annual General Meeting
Venue: Blackfriars Settlement, 1 Rushworth St, London SE1 0RB
Date: Saturday, 25 March 2017
12:00noon to 1:00PM¬†¬†¬†¬†¬†¬†¬† Networking
1:00PM to1:30PM ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† What we‚Äôve done, finance & questions
1:30PPM to 2:00PM ¬†¬†¬†¬†¬†¬†¬†¬† Visionary: Sisters Of Frida in 3 Years‚Äô
2:00 PM to 2:15PM Break
2:15PM to 3:30PM ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Strategy: Road Map
3:30PM to 3:45PM¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Break
Steering Group Members Meeting
3:45PM to 3:50PM¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Thank you and welcome new SGM
3:50PM to 4:20PM¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Prioritise outcome from Strategy session. This will involve agree work plan for the future but also assigning it to the visionary statements.
4:20PM to 4:40PM¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Governance
4:40PM to 5PM¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† A.O.B