Bringing disabled women together, mobilising
and sharing through lived experiences

Many thanks to Freyja Haraldsdóttir for allowing us to reblog this post. We met her in Leeds at the Screening AccSex meeting at the Center for Disability Studies, Leed Iniversity. So many of us could respond to the feelings she expresses here – 

I am tired of often needing to value other people’s needs more than my own.

I am tired of being anxious about small events because of the fear of being marginalized and silenced.

I am tired of people over and over again assuming my opinions on sexism and ableism are just an emotional reaction instead of opinions based on diverse knowledge and deep experience of both.

I am tired of feeling like a bad feminist when I can’t show matters of privileged women support who don’t acknowledge or understand my reality.

I am tired of people finding it okay when Hollywood presents disabled people better of dead.

I am tired of everyone but myself having more authority to decide on my abilities and strength.

I tired of my body being objectified as desexualized, weak and emotionless.

I am tired of people I love excusing ableist people.

I am tired of needing to pick out a president candidate or other people for powerful positions who I don’t identify with and will therefore have big problems understanding my reality.

I am tired of ableism being normalized on a higher level in my country then sexism and racism (not that that isn’t normalized enough).

I am tired of people not understanding multiple oppression and that I can not pick out identities like clothes to wear everyday. I am always both a woman and disabled. Not either or.

I am tired of not being able to trust that my independence is longterm because in Iceland personal assistance is still a trial project. My freedom is on trial.

I am tired of being afraid of sharing what I find hard because then I automatically become victimized.

I am tired of sometimes not being able to sleep from worries about the influence of marginalization on my future.

I am tired of people constantly asking ‘how is it going?’ in stead of ‘how are you feeling?’.

I am tired of not being allowed to be angry because it makes others uncomfortable.

I am tired of not being allowed to show difficult emotions without being stigmatized as negative and unhappy when I am most definitely not.

I am tired of not having space to talk about physical pain without my life being stigmatized as not worth living.

I am tired of many people not caring about everything mentioned above.

I am tired of not being allowed to be tired.

I am tired of being tired of being tired.

I am so tired.

At Center of Disability Studies, Leeds University, with Freyja in front. Also in the photo on far right, Anna Lawson, Sarah Woodin next to Armineh Soorenian, Embla Guðrúnar Ágústsdóttir, Kirsty Liddiard and Karin Hitselberger (in pink), Shweta Ghosh behind her and Eleanor Lisney holding banner

There is also this great speech she gave at 100 years of Women’s Civil Rights. International Conference Celebrating the Centenary of Women’s Suffrage in Iceland, October 22.-23. 2015. (speech transcript)

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.

Sam Ambreen is a blogger at Left At the Rights.

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

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.

.——————-
Eleanor 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.

Michelle 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.

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.

Poppy Hasted

Photo from her website

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).

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

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.