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Why Sisters of Frida?

Posted on Monday, February 22nd, 2016


logo: picture of a green and yellow bird with a blue background in a stamp like frame, perforated edge.

Sisters of Frida CIC is an experimental collective of disabled women. We want a new way of sharing experiences, mutual support and relationships with different networks.

Sisters of Frida started at a meeting when we floated the idea of having a disabled women’s group. It took some time to come together – the co founders were Eleanor Lisney, Michelle Daley, Eleanor Firman, Maria Zedda, Svetlana Kotova, Frieda Van De Poll and Martine Miel. We became a CIC in 2014.

We are seeking to build a/or different networks of disabled women.  The barriers and multiple discrimination have not changed, we struggle to have our voices heard as disabled women in our own rights.

We would like a sisterhood, a circle of disabled women to discuss, share experiences and explore intersectional possibilities.

Facebook: https://www.facebook.com/groups/sisofrida/

See our last AGM with the new Steering Group.

Sam Ambreen: We are, none of us, beyond hope

Posted on Sunday, May 22nd, 2016


Thank you to Sam Ambreen for allowing us to repost her blog. The article referred to in xoJane has been removed and replaced with an apology.  You can read the original at webarchive. Sam is giving an important message here, especially for disabled women, with mental health issues and internalised lack of self worth.

crazy

I didn’t read the xojane article doing the rounds, I found myself reeling from the headline as I tried to process what the author, Amanda Lauren, was saying. “My former friend’s death was a blessing – some people are so sick, they are beyond help”.

It kind of speaks for itself, the author believes there are people who are a lost cause and they should die because it will make it easier for everyone else. She feels justified in saying this, reassured enough to publish her thoughts on a global platform. I am perturbed by people who make these controversial statements, unconcerned by how they might be perceived, either possessing the hide of a rhinoceros or else feel that public opinion will sway their way (another painful reminder of the growing inhumanity we’ve normalised against anyone considered ‘other’).

I have CPTSD, a condition I am stuck with for the rest of my life because it is as the name suggests, complex. I didn’t ask to be repeatedly put in harm’s way, with no chance of escape, it’s just the life I was born into. I have explored in great detail the reasons I broke down, so that I can understand it was not my fault (when you’re mental you’re convinced you deserve it) and so that I could hope for a better future, one where I can have a fulfilling life, where I won’t be immediately at risk of a violent death.

My efforts to at least appear normal for the sake of ordinary people exhaust me, as anyone who suffers from a condition which impacts on their day to day dealings will tell you; how to not only stay alive, but to live well, to be fun and interesting and relevant. There can be no stone left unturned, no door chained and bolted in the recesses of my fragile mind, triggers must be neutralised as they arise. I frequently say things that make other people uncomfortable. I don’t do it intentionally, it’s just my experience of the world is so far removed from the norm, I come across somewhat intense and affected. When people try to cover things up, or downplay the truth, I consider that to be gaslighting because it messes with my sense of reality. When I told the truth as a child I was disbelieved and punished.

My childhood was violent, my teens isolated, my 20s split entirely from reality. Amanda Lauren would probably say my life wasn’t worth living. I believed that too, until just a year or two ago, when I suddenly remembered who I was before I became unhinged, a state I found myself in through no fault of my own. I remembered the things I was good at, the hopes I had as a pre teen, for university and beyond. This brought with it confidence and self esteem, qualities I’d mislaid following my failings as an adult in a cishet white supremacist patriarchy. When I think back to the lowest period of my life, the monotony of anhedonia and how utterly convinced I was that my time on this earth was rapidly coming to an end it frightens me to think people like Amanda believe in the legitimacy of their own bigotry.

I never thought I’d have the confidence to write my own blog, or weather a twitter storm. I didn’t dare dream of friends and lovers who hear me, even when there are no words. Even when I was a bordering on psychotic, withdrawing from SSRIs, they kept me supplied with valium and kitten pics. That’s what friends do, Amanda, they love you despite your flaws. They understand there is nothing inherently wrong with you, that you’re a product of an unjust society and that to feel depressed or disconnected from the world is a sign you’re actually (most likely) a decent sort. I don’t reject the mental ones, I welcome them with open arms, as they have me. I want to offer Amanda’s ex friend my condolences and wish for her to rest in peace. I am sorry you were stuck with people who didn’t deserve you.

“It is sometimes an appropriate response to reality to go insane.” Be wary of those who pretend they haven’t a care in the world, more so the ones who genuinely don’t.

———-

Sam Ambreen Sam Ambreen is a blogger at Left At the Rights.
She also tweets as @HamHambreen

Inclusion for all – BAMER disabled person’s perspective

Posted on Friday, May 20th, 2016


On 27 September 2012, Eleanor Lisney (and Michelle Daley) gave a presentation on BAMER (Black, Asian, Minority Ethnic and Refugee ) disabled person’s perspective at the ‘Re-thinking disability equality policy and practice in a hostile climate’ event. It  is still relevant so we are reposting it here – (first published by Inclusion London but removed since their new website redesign). 

 

This presentation was part of a series from Inclusion London ‘Re-thinking disability equality policy and practice in a hostile climate’ event

 

Stephens Rethinking Disability graphic with themes from the event

Rethinking Disability Policy and Practice in a Hostile Climate event held on 27th Sept 2012. Graphic by Stephen Hodgkins.

 

This is a presentation from Michelle Daley and myself.  Michelle is sorry she cannot be here today but we both would like to thank Inclusion London to give the BAMER disabled person’s perspective from the front line.

 In a group discussion once, we were asked what was the most important thing we’d grab in a fire or a flood and I said ‘my passport’.
Why? Because a passport defines who you are – it defines your rights. It identifies you as a citizen – and in this country, it defines whether you have rights. A refugee does not have the same rights as we do – a disabled refugee would have even less rights. In rethinking disability equality policy in a hostile climate – do we include refugees, the stateless  and migrants?

I was alerted to a tweet last year – about  Manjeet Kaur in Manchester, a woman wheelchair user seeking asylum. She was facing eviction from her accommodation and possible deportation from the UK. Her eviction was prevented by a picket outside her home and other efforts by her and RAPAR (Refugee and Asylum Seeker Participatory Action Research) in Salford,
who are campaigning together. We managed to get some disability activists to join the picket.

We have a series of questions we want you to consider –

how do we ensure that in rethinking disability equality that we include all voices – travellers, those in institutions including prisons, and those excluded groups?

How about those who are citizens but do not know they have rights as disabled people?

How do we make sure we include them? Its hard enough as a disabled person to negotiate barriers and discrimination when you are a native English speaker but for those who struggle with the language and are unfamiliar with the system and bureaucracy – how do make them aware that they have also a claim to disability equality?

 

On the frontline, where Local Authorities are cutting back, how do we ensure that BAME people are not left behind in the ‘personalisation’ process, in the maze of bewildering social welfare reforms? Resources are being cut savagely, do DPOs who are struggling for their own existence include advocacy for those for whom English is not their first language? what happens to the practice of equality for all in this hostile climate? are some disabled being abandoned because DPOs are struggling themselves with the dwindling resources in terms of staff, time, finance and energy?

The reality is that choices for disabled people are limited. Choice is an integral aspect of the principle of inclusion – it is about increasing people‟s freedom and opportunity to improve their life chances. However if we continue to have limited choices made available to us, our opportunities to achieve equality of opportunity will continue to be seriously limited. What this means is that our vision of a full inclusion is always being threatened.

 

There is a serious erosion (and the expectations) of our disability rights signed in the Convention of rights for disabled people (CRPD). When I was interviewed on radio about access for  disabled people, the  interviewer opened the discussion by asking how in times of austerity at the moment, can we afford to have disabled access, are we being realistic to ask for expensive adjustments? Our rights as citizens and as humans are seen to be expandable and that goes across board as disabled people in the ethnic minorities, women, older people, those in rural communities. As cuts slash benefits, and impact on services and wages of those who already earn a barely minimum wage (including their families) there is a scramble on what they can get to survive. Many disabled people in BAME communities depend heavily on their families  for their care needs and this recession means many of their family members are made redundant and the first people to be impacted are poor people in those communities – many of whom are  living in bad housing and maybe desperate conditions.

 

I didn’t come with shocking statistics to prove that life is harder in the BAME communities –  this is not that kind of a conference I feel. It’s more important for me to emphasise, as Michelle says, the different journeys of BAMER disabled. We are also impacted by what happens to our communities and our young people. In my local community forum, in the stop and search police procedure, I question the status of continuing discrimination against disabled BAME  because of the colour of their skin or their faith. Who advocates for them? When you get doubly discriminated who do you go to for help? What about BAME disabled women when it comes to violence against women refuges or in hospital environment when they have accessibility needs as well as dietary and other faith needs?

 

Equality Act 2010 covers some of those rights in the ‘protected characteristics’ but I do not think we know what happens when they intersect. It’s too new and I’m not a lawyer but I do know there are not that many case laws to draw upon.

 

This presentation comes from our dialogue, Michelle and I, with each other, we both care passionately about the disability movement but also as disabled people from those BAMER communities and we ask you not to have silos – As Michelle says : Positive and real change can only be achieved with the inclusion of everybody.

ROFA (Reclaiming Our Futures Alliance) was formed since this event. We urge everyone to join, have their voices included and come to the conference  on the 14th July.

.——————-
eleanorEleanor Lisney is a founder member and coordinator of Sisters of Frida. She has represented them in Geneva for CEDAW and in NYC for UNCSW. She is an access advisor, an NUJ member on the New Media Industrial Council and the Equality Council. She is also on the British Council Disability Advisory Panel and the web team of the International Network of Women with Disabilities. She enjoys being on the EVA (Electronic Visualisation & the Arts) London organising committee.

 

 

michelleMichelle Daley has over ten years experience working in the field of disability. She has worked for a number of organisations at local, national and international levels to develop, promote and implement policies on equality and diversity. She is one of the founder members of Sisters of Frida. Her work has played a major role in promoting and influencing the inclusion of disabled people in the mainstream society.
Michelle was a former member of Equality 2025, the Independent Living Scrutiny Group and currently a trustee of Independent Living Alternative. She has passionately worked at the grass root level addressing issues such as access, education, independent living and cultural diversity.

Independent Living Day with ENIL

Posted on Thursday, May 5th, 2016


5th of May is independent living day. We celebrate with European Network on Independent Living (ENIL) . 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  Disabilities (CRPD) here and with disabled people in the rest of Europe. And as disabled women.

Poppy Hasted 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 Adulting….

I had such a lovely time last week. I got to be a grown-up, which doesn’t 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 can’t walk. I can’t get dressed by myself. I can’t wash myself. I can’t make a meal. I can’t 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 don’t 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 that’s 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 ‘ladies’, 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 don’t 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 didn’t 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 I’ve 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.

Life is for living and I want to do some more.

Long live adulting.

Photo of Poppy in blue top, she wears glasses and a necklace

Poppy Hasted

Photo from her website

Attending the UN Commission on the Status of women #csw60

Posted on Tuesday, May 3rd, 2016


 

 

CSW banner with logo and texts

 

The sixtieth session of the Commission on the Status of Women took place at the United Nations Headquarters in New York from 14 to 24 March 2016.

Representatives of Member States, UN entities, and ECOSOC-accredited non-governmental organizations (NGOs) from all regions of the world attended the session.

The priority theme this year was the ‘Women’s empowerment and its link to sustainable development’ with the review theme ‘the elimination and prevention of all forms of violence against women and girls’.

Why go this year?

I have been involved in the National Association of Women’s Organisations (NAWO) for the past two years and am a core member of the UK CSW Alliance for Sisters of Frida. As an activist for gender and disability equality, I realise the impact and importance of the UN instruments in telling the state parties, and in particular, our own government of the treaties they have signed and to remind them of the legal and moral obligations. This might seem to be a quixotic task but it is evident that if we are not visible at those international spaces, our voices and concerns will definitely not be heard. Our government can also continue its façade of fulfilling its duties and pontificate about its role in global leadership where gender equality is concerned. As a disabled woman activist, the two themes of empowerment and domestic violence are of particular importance. I was asked to be in a side event on disabled women and the Sustainable Development Goals (SDGs) by Enabled Women International to speak on the first goal – poverty, and in particular the role of the UK government and the impact on disabled women of government program cuts. And since we will be there, we organized our own side event, ‘Survivors in a disabling environment, what does empowerment of disabled women mean globally’?

While we might question the expense (self-funding) and putting ourselves through the grueling schedule of the UN event, my colleague and SOF Steering Group member, Lucia Bellini (who came with me) clinched the decision by remarking that if we, from the global north could not get there (funding, access reasons) how much more difficult it would be for the disabled women in the global south? Having that in mind, we asked other disabled women whom we know from other parts of the world, Jamie Bolling (ENIL), Dr Huhanna Hickey (NZ) and Khairani Barokka (Indonesia) to record short clips (2 mins) so that they could join our voices.

What did we do there?

Here is a report with videos of the side events we spoke at on the Sisters of Frida’s, a disabled women’s collective, website.

It seems needless to note but nevertheless, my main impression of being at the UN, apart from the security, is the networking and diversity of people you meet. There was also the back to back schedule of events and discussions to attend – at the main UN building and at the Church Centre (CCUN) across the street. Even a conference junkie like myself found it difficult to negotiate and pin down the relevant ones to get to.

One of the sessions I attended which I thought would be of particular interest was a session on media and technology and the intersections with violence against women – the Safety Net Project at NNEDV (National Network to End Domestic Violence)  with sister programmes in Canada, Australia (WESNET) and Ireland. (but not in the UK, why not?) They had resources with safety tips on how to be safe online and WESNET developed Webinars for practitioners working with women experiencing technology abuse. I am also most impressed by the toolkit “Toolkit on Eliminating Violence against Women and Girls with Disabilities in Fiji”  from the Pacific region.

As part of the UK CSW Alliance, we had our own briefings every morning and evening and also worked with the Government Equalities office head of EU and international policy, Charles Ramsden. The principal output of the Commission on the Status of Women is the agreed conclusions on priority themes set for each year. This year it was on the empowerment of women. Agreed conclusions contain an analysis of the priority theme and a set of concrete recommendations for governments, intergovernmental bodies and other institutions, civil society actors and other relevant stakeholders, to be implemented at the international, national, regional and local level. The importance of this is where we can monitor and hold our government. I suggested adding ‘women with disabilities’ on an item about planning for natural disasters and emergencies – well, we always get left behind in times like those.

I met several interesting disabled women leaders, not least a commissioner for Gender Equality in South Africa, Ms Nomasonto Grace Mazibuko, with whom I had a very interesting conversation on albino-ism and the Namibian Deputy Minister of Disability Affairs, the Hon. Alexia Manombe-Ncube who wants to discuss about independent living in the UK. And of course fellow panelists Asha Hans (India), Adaobi Egboka (Nigeria)  and Andrea Parra (Columbia) with the Enabled Women International, Stephanie Ortoleva. Daniela Bas, the Director of the Division for Social Policy and Development at the United Nations Department of Economic and Social Affairs.is a wheelchair user, was most approachable and friendly as were the disabled women from Fiji (on a session on domestic violence in the Pacific), Bangladesh, and Spain. It is clear that for an assembly as big as the CSW, there were not that many of us disabled women and our voices are very muted. It seems to me that we have to concentrate on the SDGs to make sure we are definitely not left behind in the ‘leaving no one behind’ aspiration.

Photos from the event are here (they are not in any order).

 

women sitting in a seni circle with wonan in a wheelchair at the end

with Eleanor, Suzanna, Asha, Stephanie, Andrea and others before the panel session

Group photo with women standing, one wheelchair user and one man in the back row.

The UK CSW Alliance with Charles Ramsden

–written by Eleanor Lisney

 

 

Eleanor is a founder member and coordinator of Sisters of Frida. She is an access advisor, an NUJ member on the New Media Industrial Council and the Equality Council. She is also on the British Council Disability Advisory Panel and the web team of the International Network of Women with Disabilities. She enjoys being on the EVA (Electronic Visualisation & the Arts) London organising committee.

 

At UN #CSW60

Posted on Tuesday, March 29th, 2016


Two Sisters of Frida were at New York city for the ~UN  Committee for Status of Women #CSW60 – here are some of the sessions we took part there.

At Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls This side event was sponsored by Women Enabled International, Sisters of Frida & Women with Disabilities India Network

Commission on the Status of Women – CSW60 Side Event
Title: Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls
Date and Time: Thursday, March 17 2:30 PM
Location: Church Center of the United Nations – Boss Room, 770 United Nations Plaza New York, NY

The SDGs offer a valuable platform to advance dialogues with States around key areas that impact the lives of women & girls. Yet, despite accounting for almost one-fifth of all women worldwide, disabled women and girls receive scant attention. As the global community undertakes the crucial task of identifying indicators to monitor progress toward the realization of the SDGs & hold States accountable for these commitments, it is essential that this process includes the voices of disabled women  which reflects their experiences of intersecting forms of discrimination. This panel addresses four SDGs that bear on the rights of women with disabilities: Goal 1 (Poverty), Goal 3 (Health), Goal 5 (Gender Equality), & Goal 16 (Peace & Justice). Panelists will discuss barriers that disabled women  face in realizing their rights as they relate to these goals & will address how SDG indicators can better reflect the realities of disabled women  moving forward.

Eleanor Lisney (UK) – Goal 1 (Poverty) – impact on disabled women of government program cuts –

SDG goal 1. poverty transcript

At A Dialogue: Survivors in a disabling environment: what does empowerment of disabled women mean globally?

Date and Time: Thursday, March 24 12:30 PM
Location: Church Center of the United Nations – Chapel, 770 United Nations Plaza New York, NY
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.
Clip from Khairani Barokka (Indonesia)

Clip from Dr Huhanna Hickey (New Zealand)

 Clip from Jamie Bolling, European Network of Independent Living (ENIL)

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.
Speakers
Alexia Manombe-Ncube (Namibia)
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’s 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’s 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’s work.

Questions/comments

 

Dieuwertje Dyi Huijg: Coming out as disabled: Body Image, labels and denial of disability – panel speech at WOW 2016

Posted on Saturday, March 26th, 2016


[Screaming:]

 

IS THERE A​NYBODY HERE WHO IS NOT DISABLED, ILL, PREGNANT, OR FOR ANOTHER REASON NEEDS TO SIT DOWN, AND WOULDN’T MIND TO GIVE UP THEIR SEAT? THANK YOU.

By the time the train gets to my station, there are normally no seats left. Often I need to sit down to save energy to get to work and, well, work. When I go to town to work, I go to university to teach. Teaching is a profession as well as a performance: you give it your 200% in a compressed amount of time, having half of your energy simply won’t cut it.

Apart from this swollen and somewhat bruised eye right now, people assess me as a healthy, young, white, heterosexual, middle classed and generally privileged woman. True. Except that I’m not healthy (well, nor young or straight). Apart from the moments I am so utterly exhausted it looks like my eyes will pop out, puke on someone’s lap, or faint if I stand any longer on my feet, —none which normally will happen as I try to wait till I get off the train to crash or return the contents of my intestines to the world—, people feel no inclination whatsoever to stand up for me. Hell, unless someone is pregnant, looks like their eyes pop out, they faint or puke on my lap, are old and deserved their seat-stickers, walk with a cane, look like they’ve been doing some hard physical work all day, I just want to sit and read my book with Arial 20. Just because I’ve the energy levels of a snail on weed, doesn’t mean I’m a saint!

I have an invisible disability. I am invisibly disabled.

I sometimes compare the status of “being invisibly disabled” with that of having a femme identity. I identify as a femme dyke, even though I left my stiletto heels at home, because, arthritis. In your eyes, though, I’m probably the average straight chick on the panel. The queer politics, lesbian coming out hurdles and the drama of my ever-search for The Right Butch in my attempts to adhere to 2016’s dyke normativity of gay marriage aside, ultimately being a femme dyke provides me fun –whether visible to you or not. Dresses and snogging hot women and so forth.

Truth is, not so much with my health shit. Sure, having a bit of vertigo now and then gives The Butch a reason to hold me tight and protect me from an unbalanced world. I’m emancipated like that and know when to take advantage of my disabilities. But, really – not really.

According to the social model of disability, my participation in society would be equal with the priority seats and the “Look at my face, you can’t see it but I’m disabled”-pass. I don’t have a pass that proves that I’m disabled. If you can’t see it in my face, how do you know I’m disabled? If you don’t know that I’m disabled – am I disabled?

Every time that I enter the carriage, do not find an empty seat, then scream out loud in the hope that someone, always a man, stands up for me feeling gentlemanly, saving the ill and maybe even contributing to Justice, I go through an identity crisis. Yes, afraid that no one will stand up and I’ve to use spoons I don’t have in reserve, but also ashamed and guilty because, having grown up in a society where you simply man up your illness, endure your shit, because “normal is crazy enough”, somewhere in me I don’t believe I am sufficiently ill. That I am allowed to identify as disabled. That I am allowed to force others to take responsibility for their abled privilege. Coming out as disabled, I make a difference visible; where you stand up so I can sit down.

Rationally, I think that after 13ys of a variation of chronic health shit I’ve earned my stripes. But if I’m disabled, but you can’t see it, how do you know you’re abled …when you look just like me? And when you look just like me, how can I be disabled?

Because you have a bit of a headache. And your feet hurt after a day work. And you can’t remember everything. And you’re tired a bit. And without glasses you can’t see shit. And when you drink too much coffee your stomach is upset. And when you’re in a pub, your friend needs to scream for you to hear it. So, you know what it is like.

And if you know what it is like, then you know my experience. And if you know my experience, you can judge me. So if you’re not disabled, and didn’t you know what it was like?, then I’m not disabled.

Despite the promises of the social model, it is my busy relation with the NHS, the cocktail of drugs I take, the compilation of chronic illnesses, symptoms and side effects I live with, and the continuous rollercoastery adjustments to reality, desires and hopes, that contribute to what I so eloquently have categorised as Health Shit. Coming out as disabled doesn’t change much about the invisibility of my disabilities and experiences. You standing up to offer me your seat doesn’t end my identity crisis, eliminate assessing looks, or possibly solve the normativity of abledness, but, hell, it does give me a break.

DyiPresentation by Dieuwertje Dyi Huijg for the panel “Coming out as disabled: Body Image, labels and denial of disability”, Women of the World Festival 12/3/ 2016.

Dyi Huijg has coordinated, organised and facilitated networks, meetings and workshops in various social movements internationally (Latin America and Europe) and nationally (The Netherlands). In 2009 she moved from Amsterdam to the UK to do her PhD in Sociology, at the University of Manchester, about power relations and inequality, agency and social structure, and activism and social change. She also started to teach on a variety of topics, among which gender, sexuality, relationships and personal life. Currently she teaches at the University of Westminster. When she moved to London in 2013, she started to facilitate more professionally, followed train-the-trainer workshops, gained a person-centred certificate in Facilitation of Therapeutic Groups (LC&CTA), and is currently in the process of completing a Group Facilitation Certificate (Gestalt Centre). She has facilitated for London Roots Collective and is currently facilitating a lesbian, bi and trans women coming-out group in London.

 

A Dialogue: Survivors in a disabling environment: what does empowerment of disabled women mean globally?

Posted on Wednesday, March 23rd, 2016


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.
Speakers
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’s 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’s 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’s 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 hello@sisofrida.org @sisofrida

Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls

Posted on Sunday, March 13th, 2016


Please come to support us 
Commission on the Status of Women – CSW60 Side Event
Title: Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls
Date and Time: Thursday, March 17 2:30 PM
Location: Church Center of the United Nations – Boss Room, 770 United Nations Plaza New York, NY

The SDGs offer a valuable platform to advance dialogues with States around key areas that impact the lives of women & girls. Yet, despite accounting for almost one-fifth of all women worldwide, women and girls with disabilities receive scant attention. As the global community undertakes the crucial task of identifying indicators to monitor progress toward the realization of the SDGs & hold States accountable for these commitments, it is essential that this process includes the voices of women with disabilities& reflects their experiences of intersecting forms of discrimination. This panel addresses four SDGs that bear on the rights of women with disabilities: Goal 1 (Poverty), Goal 3 (Health), Goal 5 (Gender Equality), & Goal 16 (Peace & Justice). Panelists will discuss barriers that women with disabilities face in realizing their rights as they relate to these goals & will address how SDG indicators can better reflect the realities of women with disabilities moving forward.
Speakers:
Asha Hans (India) – Goal 16 (Peace & Justice) – impact of conflict on women and girls with disabilities, especially those who are refugees
Eleanor Lisney (UK) – Goal 1 (Poverty) – impact on women with disabilities of government program cuts
Andrea Parra (Colombia) – Goal 3 (Health) – sexual and reproductive health and rights, including forced sterilization and access to health care for women and girls with disabilities
Adaobi Egboka (Nigeria) – Goal 5 (Gender Equality) – Gender-based and sexual violence and access to justice for women and girls with disabilities
Stephanie Ortoleva (USA) – Welcome and Conclusion
Suzannah Phillips (USA) – Moderator ​
Sponsors:
Women Enabled International, Sisters of Frida & Women with Disabilities India Network
Logos
 

For more information: Email Info@WomenEnabled.org or hello@sisofrida.org

Sisters of Frida at #WOWLdn

Posted on Saturday, March 12th, 2016


This year is amazing! so many of us will be at the WoW festival this weekend! do go along and support -if you can get a ticket!

Coming out as disabled: Body Image, labels and denial of disability

One in five of us is disabled – so why do we try to hide it from our friends? How do we ‘come out’ as disabled women?

side profile of Zara Todd

Zara Todd

Venue Level 4 Blue Bar at Royal Festival Hall

Time 11:15am – 12:15pm

Date Saturday 12 March 2016

One in five of us is disabled – so why do we try to hide it from our friends? How do we ‘come out’ as disabled women? Four women tell their stories. Speakers include Deborah Williams, Diversity Manager BFI; Dieuwertje Dyi Huijg, Visiting Lecturer, Sociology at University of Westminster and Rebecca Bunce, human rights researcher and campaigner.

 

Chaired by Zara Todd, disability rights campaigner and activist.

In partnership with Sisters of Frida.

Others

Sexism Makes Us Sick Examining Woman’s health

Annabel

Annabel Crowley

Venue St Paul’s Roof Pavilion at Royal Festival Hall

Time3:45pm – 4:45pm

Date Saturday 12 March 2016

Examining women’s health Heart disease kills more women than men each year, fewer women than men survive a heart attack, so why do we hear so little about it? In mental health, women are more than twice likely than men to have depression and less likely to be taken seriously. How does gender affect physical and mental health care and what can we do to change the status quo? Speakers include Bridget Hargreaves, author of post natal depression memoir Fine Not Fine; Dr Victoria Showunmi, lecturer on migraines at the UCL Institute of Education.

 

Chaired by Annabel Crowley.

Toilets are a Feminist Issue

Sarah Rennie head shot

Sarah Rennie

Venue St Paul’s Roof Pavilion at Royal Festival Hall 

Time2:15pm – 3:15pm

Date Saturday 12 March 2016

Come and find out why you should give a shit about toilets. From women always having to queue, to the lack of toilet facilities in the developing world having a devastating effect on women’s safety, what can toilet provision tell us about gender equality? Come and join the grand doyenne of public toilets Prof. Clara Greed; award winning writer and feminist Beatrix Campbell; Changing Places campaigner and disabled feminist Sarah Rennie and periods activist and founder of #periodpostive Chella Quint to discuss. Beware – there may be toilet humour.

Chaired by New Statesman Deputy Editor, Helen Lewis.

Type of event
Talks and debates
Running Time
60 mins

Chores Wars and Domestic Lives

pauline with umbrella

Pauline Latchem (photo from Eleanor Lisney)

 

Venue The Clore Ballroom at Royal Festival Hall 

Time1:15pm – 2:15pm

Date Sunday 13 March 2016

Studies show that women still do twice as many chores as male partners, even when they work full-time. From housework to ‘emotional labour’, is this one of the last frontiers of normalised gender inequality? And how can we level the playing field? Speakers include counseller and lifelong feminist Pauline Latchem, and teacher and writer Lola Okolosie.

Chaired by Laura Bates, founder Everyday Sexism Project.

 

 

Black Feminisms/Black Women Pop Culture

Becky Olaniyi

Becky Olaniyi

Venue Level 3 Foyer (Green Side) at Royal Festival Hall 

Time4:00pm – 5:00pm

Date Sunday 13 March 2016

What does the portrayal of black women in popular culture tell us about race, sex and power? Join journalist and campaigner Reni Eddo Lodge, visual sociologist Emma Dabiri, activist Becky Olaniyi and playwrite Adura Onashile as they discuss the joys and challenges of being a black feminist.

Chaired by Senior Programmer, Contemporary Culture and journalist Hannah Azieb Pool

Rebecca and Zara at Youth Action Festival, Dec 2015

Posted on Wednesday, March 9th, 2016


We were asked if Sisters of Frida works with young people and yes, we do. Becky Olaniyi was very much in the picture as part of the Steering Group until she rolled into university and have too much on with university work and getting used to campus life.

And we recently had a thank you note to Zara Todd for Rebecca’s and their  workshop ‘Gender and Disability Discrimination’  at the Youth Action Festival

 

“... but I wanted to say a huge thank you for everything you did for the Youth Action Festival in December. I wanted to thank you and your colleague for giving up your Saturday and providing such a meaningful contribution to the day. We really could not have made the event the success it was without you.

 

Overall the event was a huge success. Please do have a look at the quotes from evaluation forms on the attached letter that give a flavour of what an incredible impact the day had on participants.

 

We also used the solutions that young people put forward during the day and the learning from the day to shape the policy and ideas for our Learn Without Fear UK campaign this year. You can see our campaign and policy content on our web pages and in articles in the press Daily Telegraph Wonder Women section, Metro.co.uk, Huffington Post, Good Housekeeping and the Daily Express.

Thank you Zara and Rebecca!

 

Rebecca at a table with a group

Rebecca

Zara with a reddish jumper at a table with other girls

Zara

Photo Credit: Plan International//Jessica McDermott