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Involvement of Disabled Women: Nothing about us without us

The UN Committee on the Convention of the Rights of Persons with Disabilities (CRPD) published its concluding observations following its first review of the UK government’s compliance with the Convention. We contributed to the report and went to Geneva, as volunteers, to ensure that violations of disabled women’s rights were given attention. The Committee highlighted many areas of concerns which explicitly or indirectly affect disabled women, but we’ve highlighted three key themes below.

 

1) Involvement of Disabled Women: Nothing about us without us

 

We share the Committee’s concern that disabled women and girls’ rights “have not been systematically mainstreamed into both the gender equality and disability agenda” and support its specific recommendation to “adopt inclusive and targeted measures, including disaggregated data” to prevent the multiple and intersectional discrimination we face.

 

Mainstreaming our rights, requires our involvement. We therefore also welcome the Committee’s recommendation to allocate “financial resources to support organisations representing [disabled women]” and develop mechanisms to ensure our involvement in planning and implementing law which affects our lives. For example, we were not consulted on the drafting of the coercive abuse offence in the Serious Crime Act. If we had, we would have been able to show how the ‘best interests’ defence for carers dangerously undermines the rights and safety of disabled women and people with learning disabilities.

 

Strategies need to be measured, financed and monitored. We therefore welcome the Committee’s recommendation for mechanisms to support our involvement in the design of strategies to implement the Convention through “measurable, financed and monitored strategic plans of action”. Measurability requires the collection of disaggregated data and this has been repeatedly called for by UN rapporteurs. Gaps in data mask the multiple discrimination faced by disabled women.

 

2) Multiple and Intersectional Discrimination

 

Disabled women experience sexism and dis/ableism in our everyday lives, along with many other forms of oppression (eg. based on age, sexual orientation, economic status and migrant status). Here’s an example to illustrate. A visually impaired woman cannot access information on an NHS website due to inaccessibility. This is disability discrimination, but is gender-neutral. However, lack of access to family planning services is clearly gender and disability discrimination. If she is actually a teenage girl living in a remote indigenous community, clearly intersections of multiple aspects of her identity operate to exacerbate the disadvantages she faces.

 

This is why the Convention specifically addresses the rights of disabled women in Article 6. It requires the Government to recognize that disabled women and girls face multiple discrimination. It’s therefore crucial that the Government implement the Committee’s recommendation to explicitly incorporate protection from “multiple and intersectional discrimination” in national legislation. Whether it’s routine GP appointments, cervical testing or maternity care, disabled women constantly struggle to access medical services, so we strongly support the Committee’s recommendation to develop “targeted measurable and financed” strategies to eliminate barriers in access to health care and services and to measure their progress.”

 

3) Access to Justice

Our rights are worthless if they are unenforceable or ignored. The barriers with the justice system are procedural, financial and accessibility-related and stop us from bringing claims to enforce our civil rights, count against us in proceedings (eg divorce and family matters) and prevent us from reporting criminal abuse against us.

 

We therefore strongly support the Committee’s recommendations:

  • to develop training for the judiciary and law enforcement personnel. The UN Special Rapporteur on violence against women has already noted concerns about “women being deemed unfit mothers for having ‘failed to protect’ their children from an abusive parent”. Ignorant, counterproductive and damaging comments and actions by judges and police must end.
  • to provide “free or affordable legal aid” for disabled people in all areas of law. The UN Special Rapporteur on violence against women has specifically noted concern about the evidential requirements to apply for legal aid and the consequences for family law problems.

 

The many other areas of concern noted by the Committee can be read here

 

Next Steps

 

We were disappointed by the lack of media attention given to the 17-page catalogue of shame but the disabled community, including the DPOs, continue to valiantly highlight the UN’s findings.

 

Whilst we welcome the Committee’s recommendation for the UK Government to produce annual reports on its progress, we fear it will be another exercise of denial and lack data, evidence or understanding of intersectional discrimination.

 

We, Sisters of Frida, are preparing for CEDAW (Convention on the Elimination of all Forms of Discrimination Against Women) and working with other women’s organisations on this. In the meantime, we are joining the ENIL Freedom March in Brussels and will raise it with our MEPs as to how they will be responding to protecting disabled women on VAWG as the Istanbul Convention is being ratified by the UK government.

 

Vivienne Hayes MBE, CEO of the Women Resource Centre says:

“The last time Sisters of Frida went with the UK CEDAW Working Group to Geneva, we noted in our oral statement that women of all ages and backgrounds in the UK are facing threats to their rights but this does not have to be the case if government policies are created in partnership with women’s NGOs and include a gendered perspective. This will ensure that there is not a long-term legacy of discrimination against women, and will also impact on the future economy.

 

In 2017, Sisters of Frida note that disabled women are acknowledged as still facing the same level of discrimination in the UNCRPD Concluding Observations. We call upon the UK government to honour its commitment to women’s rights and work with us to establish a clear and inclusive mechanism in order to bring women’s voices into the heart of government.”

 

Dr Mary-Ann Stephenson, Co-Director of the Women’s Budget Group said:

 

‘We know that disabled women have been hit particularly badly by austerity policies over the last seven years. Disabled women have lost income through cuts to both specific disability benefits but also to housing benefit, tax credits and benefits for children. Cuts to public services including social care, health, education and transport budgets have all disproportionately affected disabled women.

The Public Sector Equality Duty, contained in the 2010 Equality Act, places a positive obligation on all public authorities to have due regard to the impact of their policies and practices on equality. Despite this the government have failed to publish meaningful assessments of the cumulative impact of austerity on equality.

We call on the government to meet both their obligations under both domestic and international law to ensure that their policies meet the needs of disabled women’

 

Sarah Green, Co-Director, End Violence Against Women Coalition said:

 

“It is known that disabled women are disproportionately subjected to sexual and domestic violence by perpetrators of these crimes, and that disabled women face additional barriers to escaping and staying safe, and even in being believed.

 

“International human rights treaties require our Government to ensure that disabled women’s needs are specifically considered and addressed when implementing policy on policing and preventing violence. Following the UN CRDP inquiry into the UK’s performance in this area, we need to hear assurances from the UK Government that disabled women’s needs are known and are made part of policy and practice in relation to ending and preventing abuse.”

 

Pragna Patel, Director, Southall Black Sisters said:

 

‘Leave no woman behind’ is an important development and human rights goal that is central to achieving gender equality and one to which the UK government claims to be committed. But in the UK this goal remains largely rhetorical as the most vulnerable women – those with disabilities and multiple needs – are rendered marginalised and invisible by increasingly harsh economic and social welfare measures. Disabled women’s needs and rights are being gravely and systematically violated by the UK government. Why else do we see such an appalling lack of access to emergency shelters, secure housing and welfare rights, education, work, health and counselling facilities for disabled women who are also fleeing domestic violence? If the UK wants to be recognised as a leader in disability and human rights, it must develop laws, policies and strategies that enhance the rights of all women. This means understanding and addressing the overlapping and intersecting forms of discrimination such as race, gender and disability that create additional vulnerabilities and barriers for women. Sadly this government is unlikely to turn its rhetoric on achieving a ‘fairer’ society into reality but we are ready to stand with our disabled sisters to shame the government into action.

 

Lee Eggleston on behalf of Rape Crisis England and Wales said:

 

‘Disabled women who have experienced sexual violence make up a quarter of Rape Crisis service users – which is an indication of how disproportionately disabled women are impacted by sexual violence, often by their own carers. The voice and engagement of specialist organisations run by and for disabled women, like Sisters of Frida and Stay Safe East, is essential to the CEDAW process in raising awareness of sexual violence to the Committee.’

We would be happy to hear from others, individuals and/or organisations, who would like to join us in our campaign for disabled women’s rights in issues mentioned here. Please comment below or write to hello@sisofrida.org, tweet @sisofrida

 

Note: Stay Safe East is a unique user-led organisation run by disabled people, providing specialist and holistic advocacy and support services to disabled people from diverse communities in East London (currently Waltham Forest and Newham) who are victims/survivors of domestic or sexual violence, hate crime, harassment and other forms of abuse.

 

A few places left on peer led skills development course

women in groups - one at a table bsuy conversing with each other

At a Sisters of Frida event

 

We have a couple of places left for the peer led skills development course for disabled women
We are amazed by the women that have applied to be on the course. Glad that there are a couple of spaces left if anybody else wants to apply.
Please see the link above for information about the project. More information will be given when a place has been confirmed. Please write to hello@sisofrida.org if you would like to attend or for any questions. Please let us know your access needs too.

The facilitators for these sessions are:

Lani Parker has worked on disability issues in various capacities including taking part in many campaigns, facilitating training, and working within disabled people’s organisations in the areas of advice, information and advocacy. She has a particular passion for doing the work of connecting social justice issues.
Lani is the Community and Legal Service coordinator for Enfield Advice Plus Partnership Project  at Enfield Disability Action. She is involved in a number of disabled people’s groups and has taken part in many sctions She was co facilitator for the Sisters of Frida’s Disability Sexuality workshop last year.

Nim Ralph - person of colour with short black hairNim Ralph  has over 10 years’ experience as a trainer and facilitator, with specialisms in equalities and diversity work/anti-oppression and campaigning. They are Lead Trainer at Campaign Bootcamp and have facilitated for a wide range of groups and organisations ranging from the Girl Guides to Transgender Europe. Nim worked for Drake Music for the last 3 years, which focuses on Disability, music and technology.

Sisters of Frida calls out UK Government on human rights violations of disabled women

PRESS RELEASE

Sisters of Frida joins Deaf and Disabled People’s Organisations (DDPOs) from across the UK in Geneva this week to present evidence of violations on disabled people’s rights to the UN Committee on the Rights of Disabled People (UNCRPD)

In a closed session on Monday 21st August, DDPOs will highlight the UK Government’s failure to respond to many of the questions put to it by the Committee throughout this process. They will tell the Committee of the systemic failure to support disabled people to live independently and to have access to social, educational, and employment opportunities.

This is the first time the UN Disability Committee is reviewing the UK’s progress in implementing the UN Convention on the Rights of Persons with Disabilities since the UK government ratified the Convention in 2009. DDPOs will tell the Committee that the government has ignored many of the questions put to it earlier this year as part of the review process. The Committee will consider the government’s response to its questions and the DDPOs’ observations before questioning representatives from the UK and devolved governments in Geneva later this week (23 and 24 August).

Eleanor Lisney, Director of Sisters of Frida says,

‘We have been calling out on the failure of the UK Government to fulfil obligations to disabled women since 2013 when we joined the UK CEDAW (Convention on the Elimination of all Forms of Discrimination Against Women) Workgroup and delegation in 2013 going to Geneva). We did the same when we went to UN in New York city for CSW (UN Commission on the Status of Women) the UKNGOCSW delegation and held a side event. It is vital that disabled women are represented in processes like CRPD reporting as too often our experience as disabled women is invisible.This is an opportunity to change this and show how the cuts and legal changes are affecting us.’

Sarah Rennie, who will be representing Sisters of Frida in Geneva says,

‘The UK Government’s response does not address how gender-specific policies incorporate the social model of disability to break down barriers, meet the needs of Disabled women, or require an intersectional approach. We urge the Government to immediately remove the “best interests” defence in the Serious Crime Act 2015 which restricts Disabled women from seeing their perpetrators of emotional abuse brought to justice, and to improve access to medical care for Disabled women including pre-natal and reproductive health services.’

The DDPOs’ submission was co-produced by Reclaiming our Futures Alliance (including Sisters of Frida ), Inclusion Scotland, People First Scotland, DRUK, Disability Wales, Disability Action Northern Ireland, British Deaf Association, and Black Triangle.

 

 

Defend our Rights, Rights of Disabled Women, #intersectionality #CRPD17, #DDPOSGeneva

ENDS

Notes to editors:

1) The UN Committee on the Rights of Persons with Disabilities investigation is assessing what steps the UK has taken to implement the UN Convention on the Rights of Disabled People. The committee is a body of experts, nominated and elected by governments. The majority of committee members are disabled people.

2) The committee postponed its scheduled assessment of the UK (originally due in 2015) to hold a special inquiry into complaints by DPPOs that the government’s welfare reform policies had violated disabled people’s rights. The current assessment looks at a much wider set of issues, including our laws on mental health and mental capacity, employment policies and education.

3) Before examining UK and devolved government representatives on Wednesday and Thursday the committee will meet with representatives of DDPOs to discuss their views on the formal written response already tabled by the UK government. The DDPOs have prepared their own submission as highlighted above.

4) Previous UN shadow reports from Sisters of Frida can be found at http://www.sisofrida.org/resources/

5) ROFA is an alliance of Disabled People and their organisations in England including Inclusion London, Equal Lives, Alliance for Inclusive Education, Sisters of Frida, National People First and Disabled People Against Cuts. For more information see: www.rofa.org.uk

6) more information about Sisters of Frida to be found at http://www.sisofrida.org

7) information on the status of disabled women in the Serious Crime Art 2015 can be found at http://www.sisofrida.org/resources/violence-against-women/

Press queries to

Eleanor Lisney, Director, mobile 07737480378

Email: hello@sisofrida.org T: @sisofrida http://www.sisofrida.org

Join our steering group!

We’re looking for passionate and enthusiastic disabled women to join our steering group. The steering group is comprised of disabled women with different experiences, knowledge and skills who together lead Sisters of Frida. You will be in an influential position to amplify the voices of disabled women.

If you’re a young disabled woman with limited work or activism experience we want to hear from you too!

We have monthly skype calls and try to meet every 3 months. For more information, click here.

Steering Group strategy workshop – May 2017

Disabled Women: Facts and Stats

We often get asked why we campaign for the rights of disabled women. Here are a few reasons.

 

Employment and Pay

  • 35% of disabled women (and 30% of disabled men) are paid below the National Living Wage in the UK.[1]
  • Disabled men face a pay gap of 11%, while disabled women faced a gap twice as large at 22%.[2]
  • Despite qualifications, disabled women have lower participation rates in higher skilled jobs and work fewer hours than both non-disabled women and disabled men.[3]
  • 27% of disabled women are economically inactive compared with 16% disabled men.[4]
  • Lone parenthood reduces female employment generally by 15%. However, disabled female lone parents are more than half as likely to work than non-disabled female lone parents.[5]

 

Violence and Abuse

  • Disabled people experience more domestic abuse than non-disabled people. Disabled women are significantly more likely to experience domestic abuse than disabled men.[6] In fact, one in ten experienced domestic abuse in 2012-13.[7]
  • Abuse is also more severe, more frequent and more enduring.[8][9][10]
  • Deaf women are twice as likely as hearing women to suffer domestic abuse.[11]
  • The Serious Crime Act 2015 made ‘coercive and controlling behaviour in an intimate or family relationship’ a criminal offence (s.76). The Act provides that it is a defence for a perpetrator to show that they believed themselves to be acting in the victim’s ‘best interests’. This was intended to cover carers. We believe this defence risks preventing disabled women and people with learning disabilities from seeing their abusers brought to justice.

 

Health and Medical Care

  • UK maternity care does not meet the needs of disabled women. A 2016 study revealed that only “19% of disabled women said reasonable adjustments had been made for them.”[12]
  • The CEDAW Committee is concerned that “Disabled, older, asylum seeking and Traveller women face obstacles in accessing medical health care and that Disabled women have limited access to pre-natal care and reproductive health services”.[13]
  • Disabled women, particularly with learning difficulties, are at risk of forced sterilisation in the UK or are encouraged to consent to sterilisation as a form of ‘menstruation management’ rather than be presented with a range of options available to other women.

 

Mental Health

  • Disabled women with a mental health problem die on average 13 years earlier than the general UK population.[14]
  • Nearly half of female prisoners in the UK have been identified as having anxiety and depression. This is double the rate of male prisoners. What’s more, nearly half female prisoners (more than double the rate for men) report attempting suicide.[15]

 

Public Life

  • The CEDAW Committee is concerned that ethnic minority and disabled women are particularly poorly represented in Parliament, the legal system and on public sector.[16]

 

You download this as a factsheet here: Disabled women – Facts and Stats 2017

[1] Equality and Human Rights Commission. 2017. Being Disabled in Britain. https://www.equalityhumanrights.com/sites/default/files/being-disabled-in-britain.pdf

[2] Papworth Trust. 2016. Disability in UK 2016 Facts and Figures. http://www.papworthtrust.org.uk/sites/default/files/Disability%20Facts%20and%20Figures%202016.pdf

[3] All Party Parliamentary Group for Women and Work. 2016. Women Returns Annual Report 2016. https://connectpa.co.uk/wp-content/uploads/2016/03/Women-and-work-Annual-report-low-res.pdf

[4] TUC. 2015. Disability and employment. https://www.tuc.org.uk/sites/default/files/DisabilityandEmploymentReport.pdf

[5] The Poverty Site, 2011 http://www.poverty.org.uk/45/index.shtml

[6] Adding insult to injury: intimate partner violence among women and men reporting activity limitations. Cohen, M. et al. 8, 2006, Annals of Epidemiology, Vol. 16, pp. 644-651

[7] Public Health England. 2015. Disability and domestic abuse: Risk, impacts and response. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/480942/Disability_and_domestic_abuse_topic_overview_FINAL.pdf

[8] Adding insult to injury: intimate partner violence among women and men reporting activity limitations. Cohen, M. et al. 8, 2006, Annals of Epidemiology, Vol. 16, pp. 644-651

[9] Prevalence of abuse of women with physical disabilities. Young, M. et al. 1997, Archives of Physical Medicine and Rehabilitation, Vol. 78, pp. 34-38.

[10] Partner violence against women with disabilities: prevalence, risk and explanations. Brownridge, D. 2006, Violence against women, Vol. 12, pp. 805-822.

[11] Women’s Aid. 2015. https://www.womensaid.org.uk/16-days-deaf-survivors-and-domestic-abuse/

[12] Hall J, Collins B, Ireland J, and Hundley V. (2016) Interim report: The Human Rights & Dignity Experience of Disabled Women during Pregnancy, Childbirth and Early Parenting. Centre for Midwifery Maternal and Perinatal Health, Bournemouth University: Bournemouth. http://www.birthrights.org.uk/2016/09/maternity-care-failing-some-disabled-women/

[13] UN Committee on the Elimination of Discrimination Against Women (CEDAW), Concluding observations of the Committee on the Elimination of Discrimination against Women : Great Britain, November 2014, available at: https://nawo.org.uk/wp-content/uploads/2015/09/CEDAW-concluding-observations-EHRC-and-NAWO.pdf

[14] Equality and Human Rights Commission. 2017. Being Disabled in Britain. https://www.equalityhumanrights.com/sites/default/files/being-disabled-in-britain.pdf

[15] Light, M., Grant, E. and Hopkins, K. (2013), ‘Gender differences in substance misuse and mental health amongst prisoners: Results from the Surveying Prisoner Crime Reduction (SPCR) longitudinal cohort study of prisoners’. https://www.gov.uk/government/collections/surveying-prisoner-crime-reduction-spcr

[16] UN Committee on the Elimination of Discrimination Against Women (CEDAW), Concluding observations of the Committee on the Elimination of Discrimination against Women : Great Britain, November 2014, available at: https://nawo.org.uk/wp-content/uploads/2015/09/CEDAW-concluding-observations-EHRC-and-NAWO.pdf

Other resources

Sexuality and Dis/ability

 

READING LIST: intersectional disability & disabled women

 

More articles/blogs/podcasts

 

Daley, Michelle

Intersectionality and its relevance in social care for Disabled Women

Rise Up Against The Harm And Killing Of Disabled Women Through Myths (Huffington Post)

Parker, Lani

Sideways Times is a UK-based platform for conversations which in different ways link together struggles against ableism, white supremacy, capitalism and heteropatriarchy.

Join Our Steering Group

We’re looking for enthusiastic disabled women to join our steering group.

 

About Us

Sisters of Frida CIC is an experimental collective 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 want a new way of sharing experiences, mutual support and relationships with different networks. We are a sisterhood: a circle of disabled women to discuss, share experiences and explore intersectional possibilities.

 

Our Activities

We are often invited to speak on panels at conferences locally, nationally and internationally. We work hard to amplify disabled women’s voices through political channels and advancing our legal rights. We also arrange events and safe spaces for disabled women to meet, share experiences and develop networks.  

 

The Steering Group

The steering group consists of three directors and three other co-opted disabled women. We have different experiences, skills and perspectives to share and contribute. You can see the current steering group here. The group drives Sisters of Frida’s strategy and priorities. You don’t have to be on the steering group to contribute to Sisters of Frida. We have a monthly meeting via Skype, a quarterly meeting in person and correspond in between these meetings.

 

What we’re look for

It’s important to us to be led by a team of disabled women who can contribute through experience or skills or enthusiasm. We’re open-minded. Perhaps you have one or some of the following skills

  • Website or social media management
  • Presentation and public speaking
  • Event facilitation
  • Governance
  • Marketing
  • Fundraising

 

Or you may be knowledgeable in any of the following:

  • Finance and accounts
  • Disability theory and research
  • Disability grass roots activism
  • Women’s rights and feminism
  • UN Convention on the Rights of People with Disability
  • UN Convention on the Elimination of all Forms of Discrimination Against Women

 

What we ask of you

To join our steering group you must:

  • Identify as a disabled woman ((trans, intersex and cis) non-binary and gender non-conforming people but not people who identify solely or primarily as men. )
  • Committed to the social model of disability and our intersectional approach
  • Be reliable and committed

 

What we will offer you

Sisters of Frida is recognised on an international scale and you will be in an influential position. You will have the opportunity (if you wish) to speak or present on disabled women’s matters on a local, national and international level. You will be in the perfect position to hear about research, funding and networking opportunities. Participating in the steering group’s activities, adhering to governance guidelines and being in the political spotlight represents an excellent personal and professional development opportunity.

Young People – Mentoring!


Developing and supporting young disabled women is one of our key values. Don’t be put off if you haven’t got experience of activism, politics or work. We all start somewhere! We would still like to hear from you if you are enthusiastic and reliable. If we can, we will match you with a buddy to help you get involved in our steering group and learn the ropes.

 

Express your interest

  1. Let us know that you’re interested by emailing us on hello@sisofrida.org. In your email tell us why you want to join and tell us something about you. If you want to send a CV, that’s great.
  2. If shortlisted, we will arrange a skype call (or accessible alternative) with you.

There is no closing date but places on the steering group are limited. Steering group membership is a voluntary position.

 

Sarah on why join Sisters of Frida Steering Group

 

Peer led skills development course for disabled women

women in groups - one at a table bsuy conversing with each other

At a Sisters of Frida event

Following our successful projects ‘Disabled women’s voices from the frontline’ and ‘Disability and Sexuality’, Sisters of Frida are excited to launch a new peer-led skills development course for disabled women, led by disabled women. This course is supported by a grant from Rosa, The UK Fund for Women and Girls.

 

The project will run from September 2017 until May 2018 and will give participants opportunities to

 

  • develop facilitation, presentation and research skills
  • gain and share knowledge in an area of interest
  • put this knowledge into practice
  • meet and work with new people

 

The project will be split into two parts. The first part will consist of three sessions aimed at building facilitation skills and confidence for the participants. We will then go on to design a number of further sessions tailored specifically to the needs of individuals within the group. You will have a mentor who will support you in gaining skills in the area of work which you are interested in. This could include building campaigns, arts and self-expression, challenging interpersonal violence – the possibilities are endless! You will then share the skills and knowledge through a workshop designed and led by you.

 

Where and when

The first part of the course will take place on the weekend of the 16-17th September at the YHA in Kings Cross, Central London. This will be a facilitation skills course.

 

The structure and timings of the following workshops will be agreed by the group following this initial training.

 

Who is it for?

The course is for any self-identified disabled women (trans, intersex and cis) non-binary and gender non-conforming people but not people who identify solely or primarily as men. Sisters of Frida follows the social model. We especially encourage people who do not have much previous experience in facilitation, public speaking and events-organising, and if interest exceeds spaces, we will prioritise those with less experience.

 

There are limited spaces on this program. If you think you may be interested, please get in touch by the 1st of September. Please tell us a little bit (just a few words) about what you’re interested in and why you would like to participate.

If you need a BSL interpreter or other access needs, please let us know asap.

Contact: hello@sisofrida.org / 07876 742600

Empty Room with a long rounded end table with 12 black chairs. There are pictures on the light walls.

Meeting room at the YHA, 79-81 Euston Rd, Kings Cross, London NW1 2QE

Zara Todd to Brussels as new ENIL Director!

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  Eleanor with banner , Lucia behind Eleanor with stipey umbrella and Ines (from ECCL) behind Zara. Miro is also there with PA and Kate, with black umbrella

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 . Shes wearing the Freedom Drive tee shirt under her coat

Zara with John Evans at Freedom Drive in Brussels 2015

 

Zara Todd: I Will Not Settle

young white woman wheelchair user holding a microphone. She has long brown hair and the flooring is brilliant red while the other people are in a blur.

Zara Todd speaking at an event

Activist, educator, campaigner, feminist and disabled woman, all these terms are used to describe me  and I have been known use them to describe myself. Of course they are only a snapshot of the many identities and labels I have and they will continue to evolve over time. However of my identities, two identities tend to dominate people’s perception of what I should expect in life: disabled and woman.

 

I am, with all my being political (although I am decidedly non-partisan when it comes party politics) and I pride myself on being present and active in my world. Yet every day I get a  question or comment normally edged with surprise or admiration at the life I lead. Society doesn’t know what to do with me because I don’t conform to the boxes that have been created by society to understand the experience for disabled people. People expect my life to be less interesting than my non disabled peers and are shocked when it is as or more interesting than others my age. I enjoy my life and try and live it to the full but I experience many barriers in doing so and face exclusion frequently.

 

Despite the challenge my life and my achievements present to people’s perceptions, there is still a prevailing undercurrent in many of my interactions that I should settle for less or tolerate discrimination and inequality because I’m disabled.

 

I remember when I graduated from university a neighbour asked when was I getting a job at the local supermarket (I presume because that was the only place they’d seen disabled people employed). I don’t know whether I should just be grateful that they thought I could work or outraged that their expectations of me were so limited. There is nothing wrong with not working or working in a supermarket but there is something wrong with making assumptions about someone’s life choices without having a conversation with them.

 

I feel that as a disabled woman the expectation to settle is magnified because I am expected to settle as a woman as well as a disabled person. Traditionally society has framed  both women and disabled people as passive, this means that disabled women are often seen as the epitome of passive. Although we are rapidly challenging this on both grounds, I often get the feeling that I’m expected to be a bystander in life and not an actor and the barriers I experience accessing society are born out of this. For example I speak at conferences quite often and it is not unusual for me to have to speak from the conference floor or be lifted on to the stage. Although people normally apologise profusely, it leaves me feeling like I don’t belong there or that I should remember my place.

 

Frequently there is expectation that I should be grateful to settle and it’s not unknown for people get angry or put out when disabled people ask for more wheelchair spaces on buses are a great example. It’s almost like you can be here as long as it doesn’t affect me.

 

This leads me to wonder if this expected gratitude is driven by the unconscious belief that I and other disabled people have been allowed/tolerated in the mainstream party and we should fit in or shut up and accept whatever access we’ve been given. However it often leaves me feeling frustrated like I’m at a concert where I’ve discover most of the audience have access all areas passes and I’ve only been allowed through the door.

 

I attend a lot of events and conferences and often people go to great lengths to explain to me the access adjustments, whether they relate to my needs or not. While I am grateful for the thought I often feel conference organisers expect me to praise for doing the minimum. I celebrate and praise the conferences and events that embed access features without fanfare and share the information on available adjustments with everyone rather than treating accessible features as a secret that you have to look the part to access.  Sometimes when accessing mainstream events I feel like some kind of pioneering explorer entering the unknown and I feel like I have to over appreciate when attempts at access are made out of fear that the organisers won’t even attempt to include disabled people in future if I don’t.

 

Even within spaces exploring oppression or rights on grounds other than disability I often feel I’m expected settle for partial participation because I can access most of something or the bits organisers see as important. This often leaves me compromising my safety and/or dignity to access social aspects of events because they tend to be the bits seen as add ons and optional extras. Unfortunately I see the social aspects of life as valuable as the professional because they are often the spaces I can show I’m human and make connections with people beyond professional curiosity.

 

For a long time I would make compromises without articulating what I was sacrificing to be included because I didn’t want to be seen as ‘that’ person the party pooper, the moaning disabled person or the difficult one. However I realised recently that by hiding what being in inaccessible spaces costs me I was doing a disservice to other disabled people and future me who may not be able to make the compromises I currently can.

 

The pesky thing about exclusion is it is rarely visible, although this is not unique to disability.   If someone is not there how do you know whether they are not there by choice or because they are experiencing barriers getting in the space. The exclusion of many oppressed groups is difficult to challenge because if someone is excluded how do they access you or vice versa to work through and remove the barriers.

 

I get the feeling that those with hidden impairments and access needs like child care have to compromise even more often than  other groups because having visible needs initiates the conversation for you whereas those whose needs are less visible have the additional burden of deciding whether disclosure is worth it. When I am running events I try and create spaces where everyone is allowed to have and articulate needs. I do this by asking everyone what do you need to feel included and able to participate.

 

I currently have the privilege to chose how and when I compromise my safety, wellbeing and dignity to take part. What this means is in my work life particularly when accessing non disability spaces I now strangely settle more. Why? because even in the most conscious of spaces we are yet to get to the point where disabled people’s absence from spaces is consistently worthy of comment. If I’m in the room then I can raise it. People can see and feel the effort and energy I spend just getting into the room and maybe next time the next person won’t have to compromise so much.

 

In my private and social life I chose to comprise  my needs when the benefits of being present outweighs the compromises I need to make to be there. As I’ve got older and have been able to see the consequences of settling, my willingness to settle and compromise my needs has decreased. while this unwillingness to compromise my needs has lost me friends and caused me to miss things I generally have a better time now than I had when I settled for partial participation. What’s interesting though is people generally seem to expect me to settle more in my personal life  than elsewhere and I can’t work out if it’s because I’m disabled a woman or both. Although I suspect the expectation to compromise comes from the fact that in personal spaces decisions and actions are more traceable to individuals.

 

Although I compromise less in personal spaces I hide the personal impact of barriers more because I know that many of the barriers I experience are out of anyone’s control. My exception to this is attitudinal barriers because I can’t hide them and they cost me a lot. For example it is often assumed that the people that I hangout with are not my friends through choice but out of charity, kindness or cash. I would like to hope that my friends are there because they enjoy my company if not being me hopefully I’ve scared off anyone there for any other reason!  However it has taken a long time to come to terms with the fact people might actually want to be my friend even with all of additional considerations that come with that.

 

For relationships once people get over the shock as a disabled woman I might want one. Most strangers assume I should/can only date a disabled person or worse I should jump at any non disabled person who shows me the slightest bit of interest regardless of how unsuitable they might be. Navigating this minefield is still something I’m not very good at.

 

Everything I do in life I do because we only have one life and I do not want regret not living the life I want because of others expectations. Yes there are still barriers and I have to settle like everyone does but I refuse to settle just because it is expected of me as a disabled woman. I hope that by being open about the decisions I make to have control over my life that I can support others to live their lives as they wish.

 

Weirdly I think settling is fine if you can live with what you get as a result but no one should feel obliged to.

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Zara, a white woman, is smiling at the camera. she has black rimmed glasses on Zara Todd is a Sisters of Frida’s director.

Twitter @toddles23