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Attending the UN Commission on the Status of women #csw60

 

 

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 had 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 can 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

Chart of the UN Sustainable Development Goals

Chart of the UN Sustainable Development Goals

 

 

At UN #CSW60

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

[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?

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

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

Rebecca and Zara at Youth Action Festival, Dec 2015

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

Sisters of Frida and CSW60

see information on CSW

Sisters of Frida will be at the CSW60 – the sixtieth session of the Commission on the Status of Women.

We are going as part of the CSW Alliance and NAWO.

See the NAWO’s Report (Pdf) on Sustainable Develpment Goals (SDGs) European Indicators (28th Jan 2016)

Here is the schedule of UN and Gov parallel events
​for sessions on disabled women –
UN Women, United Nations Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities (IASG)
Operationalising the 2030 Agenda for Sustainable Development for Women and Girls with Disabilities
18 March, 11:30 AM-12:45 PM
Conference Room B – Conference Building (max. capacity: 53)
Contact: fajerman[at]un.org
A multi-stakeholder informal discussion to discuss and elaborate key priorities for women and girls with disabilities in the context of the operationalization of the 2030 Agenda for Sustainable Development.
UNICEF Disability and Protection Sections, the Global Partnership to End Violence against Children, UNFPA, Office of the SRSG on Violence Against Children, Global Partnership on Children with Disabilities (GPcwd) and the International Disability Alliance (IDA).
#ENDviolence Against Children and Adolescents with Disabilities
21 March, 01:00 PM – 03:00 PM
UNICEF House, 3 UN Plaza
As part of the campaign to #ENDviolence against children and adolescents with disabilities (launched on 3 December 2015) and to commemorate World Down Syndrome Day, UNICEF and partners are hosting a CSW side event on ending violence against children and adolescents with disabilities (with a focus on girls with disabilities).The event consists of: 20 minute performance of the play “Apple of My Eye”, an original play written by Tathiana Piancastelli, a 31 year old Brazilian artist with Down Syndrome. High-level panel discussion on violence, neglect stigma and discrimination against girls and boys with disabilities. ​More detail will be posted on http://www.gpcwd.org/endviolence.html closer to the event.

CSW Alliance events

Every  day   
UK    NGO    briefing    meeting    9-10    BIC
UK    Gov    briefing    6-7    UK    Mission – first    week
Tuesday   15   March  10.00 –     11.30    BIC
Displaced  women and  girls  –  the price of gender  (NAWO)
6-­‐7.30  UK  Mission  Ambassador’s reception  Invitation only
 Wednesday 16 March
3-­‐4.30  Round table with parliamentarians for young people
(IPU, UK NGO CSW Alliance)
Thursday 17th March
10-­‐11.30  BIC Women and Water (NAWO)

Time: 2:30 PM Venue: CCUN Boss
Sustainable Development Goals or Sidelining Disabled Girls?: Making SDGs Stand for All Women and Girls (SoF, Women Enabled Int)
3.00-­‐4.30    UK  Mission Redefining feminism: the voice of young women  – SDGs and VAWG what is the legacy? (NAWO)

 Frida 18th March
10-11.30 BIC The real meaning of empowerment – how best to ensure implementation of the SDGs (Advance) (NAWO YWA)
12:30pm,   CCUN Drew room Training in implementation: the role of civil society in making the SDGs Work (Pacific Rim Institure for Development Education) (NAWO YWA)
16:30-­‐18:00    CCUN Second Floor  ‘Closing the Gender Gap – From the World Humanitarian Summit to implementation’ (CARE, Government of Jordan, CSW Alliance)
 Thursday   24   12.30   Chapel   CCUN  
A   Dialogue:   Survivors   in   a   disabling   environment:   what   does   empowerment   of  disabled   women  mean   globally?   (Sisters  of  Frida,   Women   Enabled   International,   NAWO)

Sisters of Frida at the WoW Festival 2016!

 

Women of the World festival logo

We are really excited that many Sisters of Frida will be speaking at the WoW Festival 2016. At the moment we can confirm

Saturday 12th 11.30 -12.30

Coming Out as Disabled: Body Image, Labels and Denial of Disability

One in five of us is disabled – so why do so many women try to hide their disabilities?

Zara Todd, Debs Williams, Rebecca Bunce and Dyi Hudjg

Saturday afternoon with Sarah Rennie in

Toilets are a Feminist Issue

Ever been frustrated by the queue for the ladies’? Come and hear about how you can judge the gender equality of a nation by the state of its toilets. Led by the doyenne of toilet politics, Professor Clara Greed.

Sunday 13th 1.15-2.15, Pauline Latchem

‘Chore wars & domestic lives‘ –

this session is about the male/female split of domestic labour and whether or not this is one of the last frontiers of gender inequality.

Tickets can be bought online

The medical consequences of being told you’re terminal when all you are is disabled

Many thanks to the Crippled Bitch, Emily Wolinsky, for permission to reblog this.

I beg you to consider this analogy:

Imagine two children.

The first child is a child with a severe nut allergy. Let’s call her Lilianna. Lilianna, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she encounters a nut, nut dust, or nut oils, this child goes into convulsions and is minutes away from death. This child needs life-saving injections delivered immediately to her system so she won’t convulse and/or go into anaphylactic shock. Lilianna needs accommodations at school, so teachers and staff are aware of her allergy. Special arrangements may need to be made during the day and after school so this child can safely participate and attend in activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Lilianna will have to learn to read labels, prepare and cook food differently, and advocate for herself for the rest of her life.

In the case of Lilianna, would you say that she is:
A. Terminally ill
B. Disabled

The second child I want you to imagine is a child with a severe neuromuscular condition, like Spinal Muscular Atrophy. Let’s call her Sally. Sally, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she gets a chest cold, she has a hard time coughing due to weakened muscles. This child needs life-saving pulmonary therapies delivered immediately to her respiratory system so she won’t drown in her phlegm. Sally needs accommodations at school, so teachers and staff are aware of her condition. Special arrangements may need to be made during the day and after school so this child can safely participate and attend activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Sally also uses a wheelchair and other equipment that allows her to move and be comfortable. She will have to advocate for herself for the rest of her life.

In the case of Sally, would you say that she is:
A. Terminally ill
B. Disabled

Now consider your two answers. If your answer is B (disabled) for the first child, Lilianna, and A (terminal) for the second child, Sally, you are in the majority and I’m very sorry to say, but you are ableist. I know, it’s hard to process that, but if it’s any consolation, it’s probably not your fault. After years and years of skewed media, pity pornography, and a telethon about kids with neuromuscular disabilities (NMD) deemed terminal in order to raise money to “save” them with a cure, most people have arrived at the wrong answer to the questions above. Because of this stigma based from a foundation of medical model induced abelism, poor Sally is now facing an infinitely harder life as an adult than Lilianna is.

Fast-forward to little Sally’s first sexual relationship.

Yeah, I said sexual. Jerry’s kids grow up and have hot sex.

Sally grows up and starts attending college. She meets a guy and they hit it off so well that soon they are like most college kids these days and having horny sex. All of Sally’s friends tell her to go to Planned Parenthood to get on birth control. Oh wait, scratch that. Planned Parenthood is a dirty word for some reason, but that’s another essay for another time. All of Sally’s friends tell her to go to see her gynecologist to get on birth control. Sally doesn’t want to get pregnant and she’s embarrassed to talk to her parents about this guy she’s fooling around with, so she makes an appointment and takes one of her girlfriends with her to see the a gynecologist for the first time.

Guess what happens?

The doctor enters the room and completely looks past Sally to her friend. When her friend tells the doctor that she’s at the office to accompany Sally, the doctor looks at Sally dumbfounded. Sally explains that she has Spinal Muscular Atrophy, which is, “kind of like Muscular Dystrophy”. She claims that even though she uses a wheelchair, is 65 pounds, and can barely move, she is sexually active and trying not to get pregnant. The doctor’s mouth drops and he thinks back to all those years of watching the Muscular Dystrophy Association’s Labor Day Telethon. Wait, he thinks. Aren’t these kids supposed to be dead already? Aren’t they terminal? He figures Sally is an unusual case.

The doctor regains his composure and hands her an office dressing gown and a cup, tells her to go to the bathroom and provide him with a urine sample, return to the room, undress and get on the table. He says he’ll be back in the room in a few minutes. Sally, already incredibly nervous, feels panic take over. She looks at the doctor and explains that she needs assistance getting on the toilet and the exam table. The doctor has a terrible back, and young Sally looks fragile with a back curved into an S shape and tiny bony frame. He’d hate to try and lift her onto the table and hurt either of them. The doctor looks at her friend. The friend shrugs. Sally states that her friend cannot lift her. By this point, the doctor realizes that he’s just going to have to go by Sally’s word. He asks her when her last period was. He asks her if she has used condoms. He decides to write Sally a prescription for birth control and tells her to start taking it the Sunday after her next period ends. He tells her that they can do her pelvic exam another time and suggests that next time she bring someone who can lift her on the table.

Three years later Sally finally gathers up the nerve to return to her gynecologist. Yes, the doctor prescribed her birth control for three years without ever doing a pap smear; ignoring protocols, but figuring that sooner or later this fragile girl would probably be too sick to have any fun. But when his nurse practitioner came into his office one afternoon and told him that Sally had called to make an appointment for irregular bleeding, after checking his file and seeing zero history other than a birth control prescription, he remembered her. This time he knew she would need to be examined. He got on the computer, went to the search box and typed, “muscular dystrophy pelvic exam” – nothing. But he did see “spinal muscular atrophy cure”, “SMA angel”, and “make a muscle”. He typed in “muscular dystrophy pregnancy” – nothing. But he did see “donate to save a life” “girl with terminal muscle illness chooses heaven”, and “live unlimited.” He figured he’d wing it.

Twenty-three year-old Sally arrived at her gynecologist’s office a few days later with her boyfriend and a personal care attendant. Her doctor’s office was still on the second floor and the elevator was still rickety and small. It smelled like the 1970s. When she got off the elevator and rolled to the door at the doctor’s suite, she tried to open the door, but it was very heavy and no automatic openers were visible. Thankfully, her attendant held the door open. She drove into the office and navigated through the tight waiting area with chairs pushed so closely together that strangers’ shoulders were overlapping. Sally approached the receptionist window, which was three feet higher than she was. The receptionist started asking her attendant questions and Sally spoke louder. The receptionist handed her boyfriend a clipboard and told him to fill out Sally’s information for her. Just a few nights before Sally had celebrated her acceptance into a top law school, but the receptionist proceeded to call her “sweetie”, and spoke slowly when addressing her. Sally knew right away that no one here had ever had disability awareness training.

45-minutes later…

Sally’s boyfriend considered himself a patient guy. He loved Sally, but it was a little irritating that he had to take the afternoon off of work in order to lift her onto a table. He didn’t tell her that though because he knew she was more than worried about the bleeding. When Sally was finally called back to the exam room, he realized that the five of them couldn’t all fit in the room. First, he and Sally went in. They finally got the wheelchair angled right so he could cradle lift her out of her power wheelchair and put her on the table. Her attendant had to climb over the chair in order to move the wheelchair out of the room. Her boyfriend had to hold her still on the tall narrow table so she wouldn’t fall off. Sally was sweating and shaking from nervousness, like a bird captured in the palm of a human hand. Her attendant quickly came over and both of them managed to get her undressed. She couldn’t lie flat on her back and needed to rest on her right side facing the wall until the doctor was ready to see her. By the time she was in a resting position, Sally asked her boyfriend to leave the room. She was in tears. She said she wished she didn’t need him to lift her because she really wanted to, “handle her woman business alone.” Sally’s attendant shooed him off and he went out to wait for their call. While he waited, he secretly checked his Tinder app.

The minute the doctor began Sally’s exam he knew something was very wrong. The bleeding was bad. Her bloodwork from the lab had markers. She was in agony. Both of them were visibly uncomfortable. The doctor knew the probability of running more tests, especially after identifying a small lump in her left breast. He didn’t want to scare Sally, so after she was dressed and back in her chair, he quickly listed off a number of labs and diagnostics she would need to get immediately. He referred her to his trusty diagnostic lab that he had used for the last twenty years and said they would take good care of her. When Sally left, she had a folder full of referrals. This meant more doctors’ appointments. Her boyfriend said he couldn’t take off work again. Her attendant said she would go, but didn’t think she could lift her on the table safely. They’d work it out somehow.

Two weeks later, still bleeding, Sally exited another elevator that smelled like the 1970s. She went down another hallway decorated in dismal brown colors, which led to another heavy wooden door. Her attendant opened it. Sally recognized everything even though she had never been to this lab before. This familiarity was enough to make Sally downplay her symptoms that she listed on the form the receptionist handed to her attendant from “often” to “rare”. When she finally got into the mammogram imaging room and saw the machine that required someone to stand and lean into, she flashed back to three years before at the gynecologist’s office. The nurse handed Sally her exam robe and told her to undress. She asked her if she needed help standing. Sally looked at her attendant and looked back at the nurse. She wanted to scream with frustration, but this familiarity became the magical cure that she always needed. She said that she wouldn’t be able to do the exam because the equipment wasn’t accessible. The lab technician stared at her dumbfounded. “Well, why don’t we get you to another lab, Sweetie?” The tech told her all about this lab sixty miles away. Accessible public transportation could drop her off forty-seven miles away.

Sally smiled and took the cure instead.

Sally went home that night, shredded her documentation on the different types of cervical and breast cancers her doctor gave her, cancelled her future appointments, told her attendant that she’d be fine, told her boyfriend that the appointment went well, and bled daily until she died of cervical cancer six months later.

At her funeral, located at an inaccessible church, all the people who stood to speak about little Sally said that she was a SMA Angel who fought a brave fight against a terminal illness and lost like so many other angels. As mourners walked out of the funeral home, they wrote a donation check for a cure for Muscular Dystrophy.  One mourner, a friend Sally made in high school, made sure to avoid the bowl of nuts sitting on the table near the donation envelopes as she headed toward the door.

Sisters of Frida AGM 6th Feb 2016

14 women in front of the Sisters of Frida banner, some in wheelchairs. and one baby held in mother's arms

Group photo at the end of the AGM

 

We had a great turn out for the annual meeting at Blackfriars Settlement last Saturday. The venue was great, spacious for our needs and had good access. Not everybody could stay the whole time.

We have a nice lunch and the meeting proceeded well with Eleanor giving an introduction and welcoming new people, reporting on activities in the past year. Lani and Dyi spoke about the Sexuality and disability workshop before we had a short break. Sarah then gave a presentation on the Sisters of Frida’s structure and lead the discussion on how to proceed to work in the future. There was great enthusiasm on the idea of a ‘family’  – on the discussion for a name for supporters and donations. It continued on to what Sisters of Frida did and does as a collective and ended with a question and answers session before time ran out.

There was a short Steering Group meeting with old and new members before it was time to clear up and out of the venue.

The Steering Group 2016

Annabel Crowley

Armineh Soorenian

Dyi Huijg

Eleanor Lisney

Kirsty Liddiard

Lucia Bellini

Michelle Daley

Rebecca Bunce

Sarah Rennie

Sophie Partridge

Zara Todd

 

many thanks to Obi for livestreaming for us – some sisters could not make it to the meeting.

here are the links if you want to watch

http://bambuser.com/v/6084341

http://bambuser.com/v/6084446

Meeting Minutes Meeting minutes SoF_AGM2016