Bringing disabled women together, mobilising
and sharing through lived experiences

Sisters of Frida would like to give huge congratulations to Zara Todd for her new post as the incoming director of ENIL.

She will be taking over from Jamie Bolling, who has been a great supporter of Sisters of Frida. We give her our best wishes for her next plans and some of us hope to see her at this years Freedom Dive in Brussels.

We’re happy that Zara will continue as one of the Sisters of Frida’s directors.

Zara (in white rainwear) with Sisters of Frida at the 2013 Freedom Drive in Strasbourg,  Eleanor with banner , Lucia behind Eleanor with black stripey umbrella and Ines (from ECCL) behind Zara. Miro (from ENIL) is also there with his PA and Kate, with black umbrella

Zara with John Evans at Freedom Drive in Brussels 2015

Photo of meeting from European Parliament Anti-Racism and Diversity Intergroup. http://www.ardi-ep.eu 

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.

with Nadia (ENIL), Eleanor (SOF), Freyja and Embla (Tabú)

It seems right that we should meet with ENIL member before the event  – Nadia Haddad and Tabú ‘s Embla Ágústsdóttir and Freyja Haraldsdóttir for drinks to talk before the event.

Embla and Freyja were giving their testimonies on behalf of  the next day on domestic violence against disabled people. Here is their speech for Tabú.

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 ‘is complicit in high levels of domestic violence’ on their appearance.

Ana Peláez, the Chair of the European Disability Forum (EDF) Women’s 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’t 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’t 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 Peláez EP  (Word doc) speech in full that she kindly send us.

It was wonderful to meet Madelen Löw from We Rise Again (Sweden) who spoke her powerful testimony

Madelen Löw with Judith Ward UK MEP

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

Hearing hosted by MEP Soraya Post S&D : Domestic violence against people with disability

Soraya Post MEP

MEP Soraya Post invited the civil society, NGO’s and Members of the Parliament to a hearing regarding domestic violence against people with disabilities, in order to raise awareness and put the issue on the political agenda

For the panel on Structural problems faced by people with disabilities, when accessing their full rights, Eleanor Lisney spoke for Sisters of Frida and ENIL (European Network of Independent Living)

(a summarised version was given due to meeting running out of time )

Thank you very much to Soraya Post MEP – for this opportunity to speak.

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

We are seeking to build a/or different networks of disabled women.
We would like a sisterhood, a circle of disabled women and allies to discuss, share our experiences and explore possibilities. So at this moment we remain strictly a female group – female includes anybody who self identify as female.

• – unfunded, we focus on issues specifically to do with disabled women –there is a gap in Women’s organisations and disabled people’s organisations
• – advocate disabled women’s rights – we went to UN CEDAW examination with other UK women NGOs to Geneva and the UN CSW (Commission on Status of Women)
• – we re part of ROFA – Reclaiming our Future Alliance for CRPD shadow report
• – we have spoken on events on social justice, on intersectionality and on domestic violence
• – we spoke for disabled women at the Global Summit to end sexual violence in conflict

The European Network on Independent Living (ENIL) is a Europe-wide network of disabled people,  Independent Living organisations and their non-disabled allies on the issues of Independent Living. ENIL represents the disability movement for human rights and social inclusion based on solidarity, peer support, deinstitutionalisation, democracy, self-representation, cross disability and self-determination

Speaking on structural problems when accessing full rights for disabled people, I would like to emphasise the importance of access –

• Access to education – this includes sex education where disabled people are often excluded, and education is a key to being able to access rights, being aware of rights need you to be literate which leads on to
• Access to information – including web accessibility, for knowing what’s happening and how, where, when to go to for help and make your voice known in consultations
• Access to the built environment – physical access and independent living so that you are not trapped in your home or a residential place, having the right assistive equipment and care ( personal assistance.)

• Access to justice – you can have the most wonderful legislation enshrining your rights but if you cannot get to them because you do not have the socio economic means, they would might as well not be there – legal aid is essential

Societal attitudes is also an impediment ie. Stigmas and societal discrimination (social model of disability)

Rashida Manjoo : UN special rapporteur on sexual violence said

• “Violence against women needs to be addressed within the broader struggles against inequality and gender-based discrimination.” Rape and domestic violence do not occur in a vacuum, but within a culture shaped and influenced by issues such as normalised harassment in public spaces and the dehumanising objectification of women in the media.

Where disabled women are concerned, there is such a low expectancy to have relationships of any kind that they internalized a low esteem, supposing that they are ‘lucky’ to be in a relationship even if it is an abusive relationship and there is a real fear of care support being withdrawn.  Disabled women see violence and abuse as “part of life” : there are high levels of violence, with very low rates of reporting. Violence and abuse happen behind closed doors: at home, in day centres, in residential homes, in supported accommodation, in special hospitals and on mental health ward. Few disabled women access mainstream support services. There is also poor access to justice and often no response

A 2014 study found that only around 15% of rapes recorded by police as crimes resulted in rape charges being brought against a suspect. The research shows that more than 80% of people reporting rape to the Metropolitan Police are vulnerable to sexual attack (women with psychosocial disabilities and women with learning disabilities) but that these same vulnerabilities mean their cases are less likely to be result in a suspect being charged.

(see https://www.thebureauinvestigates.com/2014/02/28/revealed-why-the-police-are-failing-most-rape-victims/)

Professor Stanko’s (Professor Betsy Stanko 2014) research into how the Police deal with rape victims showed that women with mental health issues are 40 per cent less likely to have their case referred to the police for prosecution than women without mental health issues. Women with learning difficulties were 67 per cent less likely to have their case referred.

“These women face almost unsurmountable obstacles to justice, their rape is highly unlikely to carry a sanction, and in that sense, it is decriminalised.”

“Victim vulnerabilities effectively protect suspects from being perceived as credible rapists”.

Lastly, there is also the intersectional ( such as race, ethnicity, sexual orientation, gender identity and immigration status) ) aspect of structural barriers – access is about more than just ramps – my needs may be about faith or culture, or about how you explain things to me, or getting the right interpreter who uses sign language that I can understand. My barriers may be compounded if I am a Indian lesbian deaf wheelchair user for example.

Sisters of Frida works with StaySafe East in London who has years of experience working with disabled survivors. I suggest asking them for advice on best practice on helping disabled people caught in domestic violence.

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.

Thank you.

Eleanor Lisney

Group photo of some of the participants after the event/hearing, Embla, Freyja, Madelen, and Eleanor in the front row. Aaron Isrealson, one of the organisers is in the back row.

When we were in NYC at the UNCSW in March earlier this year, we met Hon. Alexia Manombe-Ncube, Deputy Minister: Disability Affairs in the Republic of Namibia. She kindly agreed to be on the panel for our side event.

She said she would like to visit the UK to get some benchmarking ideas about independent living – we gave her some contacts including Inclusion London and European Network of Independent Living (ENIL) and arranged for her to visit a local Disabled People Organisation in Greenwich (GAD) and she also met with Sisters of Frida : Eleanor Lisney, Sophie Partridge, and Michelle Daley. Michelle Baharier (who was also at NYC for our panel) was able to join us later.

It was great to meet the group of people who came with her too in August and we hope they found the visit a useful one.

Sisters of Frida, Sophie and Eleanor, and Michelle Daley  joining on mobile phone, with the Hon. Alexia Manombe-Ncube and her colleagues

At the Greenwich Association of Disabled People (GAD)

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

Sisters of Frida members were in Strasbourg to join ENIL (European Network of Independent Living) Freedom Drive.

Zara Todd was there as a member of the young ENIL group,  and chaired the session Rejuvenating the Independent Living movement. It was heartening to see the leadership of young people at this meeting.

Zara chairing panel of young ENIL

We also took part in the march to the European Parliament from Place Republique even in the pouring rain. About a hundred disabled people with their supporters chanted and wound their way to the European Parliament – this is the 6th procession. It has been happening  every 2 years.

Sisters of Frida and allies!

the procession in the rain

When we got there we went into the big meeting room to meet out MEPs but it was disappointing this time because very few of the MEPs were there inspite of the fact that many of the disabled people had travelled long distances to get there. The Chair of the Disability Intergroup, Adam Kosa, did not bother to turn up, sending the excuse that he had no sign interpreter.

For the UK, Richard Howitt (Labour) and Jean Lambert (Green Party) came to address us – Richard was obviously apologetic that we were treated so shabbily. Many of the Irish MEPs came and Martin Noughton leading the meeting from the floor suggested that Adam Kosa should resign and that we should have a sit in. Adolf Kadzka said he was fed up of being patted on the head and coming there to Strasbourg every 2 years without making any progress. E mails and texts were sent out to other MEPs and more started to arrive, notably E McMillan-Scott (Lib Dem, previously Tory). He is the European Vice President, he told us he did not know we were there, even though all MEPs were informed. Interestingly enough his portfolio is human rights and democracy : ‘active involvement in the Arab Spring, as well as his leadership of the Single Seat campaign to end MEPs’ monthly trek from their base in Brussels to their official ‘seat’ in Strasbourg’ – what about our human rights? he spoke about the cost of the monthly trek and asked for some reps to be introduced to European Parliament chamber (discussing the topic of Syria at the moment).

at the big meeting with MEPs

Richard Howitt came to rejoin us after the big meeting and we spoke about the austerity effects in the UK at present time. He was questioned on Labour’s stand on welfare reforms, and was told that disabled people was not certain that there was much difference between the two parties. He was sure that Labour would not have chosen to cut welfare so drastically. He apologised again for the bad reception from the Disability intergroup. He would welcome being invited to speak at disability groups in the UK and events in London, possibly but everything dependent on his availability.

Zara, Lucia and Eleanor with Richard Howitt MEP

Jean Lambert MEP with Zara

Zara had a good talk with Jean Lambert as her MEP on disabled women issues. It was a good experience for all of us in Strasbourg.

We are very pleased that Zara is part of  the european project team for the supporting disabled young people to become future leaders of the independent living movement programme

The project will entail a weeklong study session at the Council of Europe with the purpose of encouraging and supporting disabled young people to advocate for human rights in their countries and at European level. Participants will have an opportunity to gain a better understanding of disability issues and acquire skills to promote the views of other disabled young  people from their countries. The project team consists of 5 members who have the responsibility for choosing who will  attend the study session at the Council of Europe.

Zara Todd – has a degree in psychology and a Masters in Central and Eastern European studies. She works for a Disabled Peoples Organisation called ALLFIE (the Alliance for Inclusive Education) supporting and training a group of  disabled young people to become researchers. Before that, she has worked with a number of disabled children’s organisations working on participation and involvement. Zara has worked on policy and campaign work including advising government, since the age of 11 both in the UK and internationally. Currently she is setting up a website with a friend in New Zealand to help disabled activists under 30 connect and share knowledge internationally.

Read more at the ENIL website and facebook group.