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
At the European Parliament: Domestic violence against people with disability
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.
Embla and Freyja were giving their testimonies on behalf of¬† the next day on domestic violence against disabled people. Here is their speech for Tab√ļ.
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 and¬† Bekki Smiddy. Here is their blog of the day with a audio recording and transcript. There was much appreciation of their testimonies.
John Pring of Disability News Service wrote the article¬† ‘Cuts mean government ‚Äėis complicit in high levels of domestic violence‚Äô on their appearance.
Ana Pel√°ez, the Chair of the European Disability Forum (EDF) Women‚Äôs 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 don‚Äôt 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 don‚Äôt 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.
Here is the Ana Pel√°ez EP¬† (Word doc) speech in full that she kindly send us.
It was wonderful to meet Madelen L√∂w from We Rise Again (Sweden) who spoke her powerful testimony
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.
More photos from the event at Flickr account
Joining the Women’s March London Saturday 21st January
Sisters of Frida are happy to march with the¬† Women Equality Party on Saturday. they are supporting us including helping with access needs so that we are able to march together.
They will have volunteers ready to support people with access needs on the day. If you need to contact us here is the mobile number you can contact 07453528706 – it might be better to text.
you can also contact us through twitter @sisofrida
see the access information provided by the organisers
And from the WEP
Getting there and getting away
- Roads will be closed from noon to 17:00, so we suggest that you plan for delays if you are expecting to rely on buses or taxis
- If you are traveling by tube please be advised that Green Park is the only nearby station that is fully accessible. ¬†If buses are off this may mean you need to make your own way to Green Park tube station, which is slightly under a mile from Trafalgar Square
- Please note that the Jubilee line will be closed on the day.
Buses (likely to be disrupted between 12noon and 5pm)
- To reach Grosvenor Square (stops along Oxford Street near Bond Street Station): 6,7,10,13,23,73,94,98,137,139,159,189,390
- To reach Park Lane: 2,10,16,36,73,74,82,137,148,414,436
- To reach Green Park (stops along Piccadilly): C2,9,14,19,22,38
At the start
WE volunteers will be located at both drop-off points and can help guide you to the starting points, and we will also have a volunteer who can accompany you on the shorter march route if you wish
If you think you might need support, please make yourself known to a WE volunteer before the start. ¬†We will be wearing a WE logo card on a lanyard so that you can identify us
During the march
Our volunteers on hand to help if you need any support and people at the back of our block looking out for anyone who needs some help
If you would like someone to buddy you on the march, just let us know.
And if you’re unable to march on Saturday?¬†
Not sure you can get into the Houses of Parliament on a Saturday to use the toilet.
Marchers taking the shorter route from Pall Mall
There is a shorter route joining the march from Pall Mall, and you are welcome to join the WE/Sisters of Frida block from this point. There will be a WE/Sisters of Frida point person at Pall Mall with a banner. The organisers have let us know that there are drop off points for people joining the march on¬†Pall Mall¬†from the north, at the bottom of Regent Street; from the south,¬†Waterloo Place. There will be access stewards with green placards here. It is recommended that you arrive by 1.20pm to join the procession.
We hope you will join us – bring your family, childen, pets,¬† friends, PAs, support workers. We might not be many but we will be seen. But please self care is important, we totally understand if you cannot join the march.
Send us your photo – a very short message and we will tweet it during the march! on twitter or to firstname.lastname@example.org
Submission to the Human Rights Council‚Äôs Universal Periodic Review (UPR)
Sisters of Frida with the Women Enabled International provided evidence to the United Nations Universal Periodic Review of Human Rights of the United Kingdom. We focused on disabled women and specifically on violence against disabled women and domestic abuse.
A Dialogue: Survivors in a disabling environment: what does empowerment of disabled women mean globally?
Venue CCUN Chapel 12.30-2pm (ground floor) Enter by the far door not the side with elevators. The shape of the room (chapel) might prove a challenge for a formal set up.
This panel will be discussing what would empowerment of disabled women mean locally, nationally and globally. We will try to include voices of disabled women (short video clips) from different parts of the world stating what it means to them if its possible with the venue. We will post the clips online for later viewing if not. We will use the Social Model of Disability; that is to say it is systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently), that disable us. We will also look at the different nuances of violence against disabled women, the different forms of abuse and how disabled women in particular are affected. How they survive inspite of having to face numerous challenges/barriers wherever they are in the world.
Alexia Manombe-Ncube (Naimbia)
Alexia is the Deputy Minister of Disability Affairs in the office of Vice President, Namibia. Recently appointed by President Hage Geingob to handle the affairs of physically challenged people, Manombe-Ncube has appealed to stakeholders to highlight the plight of the country‚Äôs disabled people in order for her to realise her ministerial declaration of intent. She also urged stakeholders to apply all their energy towards the empowerment and development of the disabled and specifically to close the gender equality gap.
She champions those in the rural areas saying disabled are have less resources and left to crawl because they do not have wheelchairs like people in the cities. Alexia will be speaking on the status of disabled in Naimbia and her own empowerment as a minister.
Lucia Bellini (UK)
Lucia currently works as an advocate for disabled people who are victims of domestic violence. She is also a Disability Rights Advocate where she assists people to access care packages, to be re-housed, to apply for benefits and to appeal against decisions they are not happy with. She has a masters in Global Citizenship, Identity and Human Rights from the University of Nottingham. In 2008 to 2010, she worked with disabled people‚Äôs organisations in Guyana where she provided disability equality and project management training to many disabled people throughout the country. She is particularly passionate about ensuring disabled women feel empowered and equipped to make their own choices. Lucia will be speaking about disabled women caught up in domestic violence in the UK.
Michelle Baharier (UK)
Michelle (UK) is a visual artist and disabled activist with lived experience of mental-distress for over three decades. She set up and ran a disabled lead arts organisation changing the way disabled people were perceived in the main stream.
She has worked with women’s organisations and on a telephone help line for women affected by violence, and with women from a variety of cultures including the Poppy Project which supports women who have been trafficked to the UK, the Diane project for Iranian women who need a safe place to be due to violence. Michelle will speak about her work with mental health survivors and their struggle for empowerment.
Suzannah Phillips (USA)
Suzannah is the Legal Advisor for Women Enabled International. Her work focuses on legal advocacy with the United Nations and other international and regional forums to strengthen human rights standards on the rights of women and girls with disabilities. Prior to joining WEI, Suzannah was the International Women’s Human Rights Clinical Fellow at CUNY School of Law, Legal Adviser for International Advocacy at the Center for Reproductive Rights (CRR), and a Human Rights Fellow with VIVO POSITIVO in Santiago, Chile. She is currently a member of the International Human Rights Committee at the New York City Bar Association. Suzannah received her J.D. from Columbia Law School and her B.A. in Social Anthropology from Harvard University. Suzannah will be speaking on how different legal instruments can be used to support empowerment of disabled women especially with Women Enabled International‚Äôs work.
Eleanor Lisney (UK)
Eleanor is born Malaysian Chinese of immigrant parents who moved to UK herself for graduate study. She is a founding member of Sisters of Frida will facilitate the meeting.
We will have time to discuss some action points that could lead us to unite across the world in solidarity and in sisterhood.
http://www.sisofrida.org/ email email@example.com @sisofrida
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Last updated: 2 March 16
Sisters of Frida at the WoW Festival 2016!
We are really excited that many Sisters of Frida will be speaking at the WoW Festival 2016. At the moment we can confirm
Saturday 12th 11.30 -12.30
Coming Out as Disabled: Body Image, Labels and Denial of Disability
One in five of us is disabled ‚Äď so why do so many women try to hide their disabilities?
Zara Todd, Debs Williams, Rebecca Bunce and Dyi Hudjg
Saturday afternoon with Sarah Rennie in
Toilets are a Feminist Issue
Ever been frustrated by the queue for the ladies‚Äô? Come and hear about how you can judge the gender equality of a nation by the state of its toilets. Led by the doyenne of toilet politics, Professor Clara Greed.
Sunday 13th 1.15-2.15, Pauline Latchem
‘Chore wars & domestic lives‘ –
this session is about the male/female split of domestic labour and whether or not this is one of the last frontiers of gender inequality.
Tickets can be bought online
Khairani Barokka:poet/disability & arts advocate at Bare Lit Festival 2016!
We wish her all the best!! and hope a few of us will manage to get to see her there at the Free Word Centre¬†!
Khairani Barokka (b. 1985) is a writer, poet, and interdisciplinary artist. She is also a practitioner of think/do advocacy in the arts, particularly on the ways in which innovation in storytelling can increase inclusion and access for and by disability cultures and feminisms (both of which she is happy to be a part of). Born in Jakarta, Okka works, teaches, and is published internationally, in print and online (see WRITING for recently published and forthcoming work). Her lectures, performances, workshops, and/or projects have been presented extensively, in India, the US, Australia, Malaysia, the UK, Austria, Germany, Singapore, and her native Indonesia. She has a masters from ITP at NYU‚Äôs Tisch School of the Arts, as a Tisch Departmental Fellow, working on participatory, interactive art, literature, and social issues storytelling. Her BA (High Honors, College Scholar) was from Middlebury College in Sociology/Anthropology.
Okka is the writer, performer, and producer of a hearing-impaired accessible solo show, ‚ÄúEve and Mary Are Having Coffee‚ÄĚ (with a grant from HIVOS as main sponsor), which premiered at Edinburgh Festival Fringe 2014 as Indonesia‚Äôs only representative. Previously, she pioneered the production of the first live-streamed spoken word shows in Indonesia, involving cross-national collaborations, with a focus on social justice/disability justice. As an independent scholar, she is a member of the International Federation for Theatre Research (IFTR), and has presented at international conferences, festivals, and as a two-time TEDx speaker (Jakarta and Youth@Chennai). Okka was profiled in UNFPA‚Äôs book ‚ÄúInvesting in Young People in Indonesia: Inspirational Young Leaders Driving Social Change‚ÄĚ (2014) for raising awareness of disability issues and perspectives through art and writing. She has also been featured widely in national and international media, among them multiple ABC Australia appearances (radio and television), RRR (Aus), The Hindu (India), The Times of India, The New Current (UK), and all major Indonesian newspapers and media including National Geographic, Esquire, and BBC Indonesia (see PRESS for complete list).
Okka was most recently Artist-In-Residence at Rimbun Dahan (Malaysia, 2014-15) for 6 months, where she worked on writing projects as well as using text in mixed media works. She has also held residencies at Vermont Studio Center (US, 2011; with a grant for poetry, as first Indonesian writer-in-residence), Tutti Arts (AUS, 2013), the EQUILIBRIUM Project at Sandarbh (India, 2014), Jatiwangi Art Factory‚Äôs Village Video Festival (Indonesia, 2012) and was Emerging Writers Festival‚Äôs (AUS) Inaugural International Writer-In-Residence for 2013.
Her first book as sole author, a poetry-Braille-art production entitled “Indigenous Species” (also to be made available in non-Braille versions), will be out in late 2016 with Tilted Axis Press (UK). “HEAT”, an anthology of Southeast Asian urban writing co-edited with Ng Yi-Sheng for Buku Fixi Publishing (Malaysia), will be launched at the London Book Fair in 2016. In September 2015, Okka began a PhD by practice in Goldsmiths’ Visual Cultures Department, on an LPDP Doctoral Scholarship. She continues her work at the intersections of writing, art, disability cultures and participatory narratives with a long-awaited project–it’s been given the enticing codename “Project A”, as lacklustre codenames are significantly underrated as a method of approaching secret missions.