This is reposted from The Conversation which uses a Creative Commons Attribution NoDerivatives licence and with kind permission from Kate Ellis. We think this fits in very well with what was voiced at the panel on disabled women at Feminism in London.
The sometimes uneasy relationship between feminist groups and disability activists was highlighted last weekend, when online Australian feminist group Destroy the Joint (DTJ) blocked and banned a number of high-profile Australian disability activists, claiming the women were in breach of their rules.
Several disability activists began posting their experiences, only to be deleted for being ârepetitive, circular and off topicâ.
The comments that were deleted included the following:
My doctor told me to get a hysterectomy or change my tampon in my office because there was no accessible toilet nearby at my workplace #beingawoman
when people deny my sexuality because they think disabled people having sex is disgusting #beingawoman
DTJ banned the commenters from its Facebook page, for âspamming this post and page with a large number of obvious half truths and distortionsâ.
After a number of members and disability activists encouraged the group to reconsider its stance on intersectional feminism, DTJ issued an apology yesterday afternoon:
Let us begin with a belated and unreserved apology about the way we have handled the comment moderation in this instance [the #beingawoman incident]. We acknowledge we can always be more inclusive.
We are constantly discussing ways we can achieve this and no woman living with disability should be excluded from this page. Anyone who has been banned as a result of this will be unbanned. Please email firstname.lastname@example.org so we can be thorough about this.
It has always been our mission to include everyone and Counting Dead Women includes all women who have been killed as a result of gendered violence.
While it was a disappointing weekend for those of us who identify as both disabled and feminist, the gaffe has prompted a reflection on the ways disability politics are essential to feminist politics.
Disability is a feminist issue and the silencing of disabled voices and experiences does not further the feminist cause. While the women posting on DTJ may have experienced gendered oppression, such as domestic violence, they are simultaneously affected by ableism.
American law professor KimberlĂŠ Crenshaw described the ways minority groups experience multiple and overlapping oppression as intersectionality in 1989.
Women with Disabilities Australia recognises that, for women with disabilities, the effects of gendered oppression are compounded. As Sue Salthouse and Carolyn Frohmader explained in a 2004 presentation for the group:
Low levels of education relegate women with disabilities to lower echelons of society, limit their access to information and their ability to interpret it, limit their life choices and limit their ability to achieve financial and living independence.
Women with disabilities are also more likely to suffer domestic violence and sexual assault.
Feminist blogger and activist Clementine Ford told me via Facebook that this is the reason why disability politics must be included in feminism:
It is vital for feminism to focus on the impact of sexual violence, but how can we do that properly if we donât acknowledge that 90% of women with an intellectual disability have experienced sexual assault?
Reproductive rights are core to feminism, yet they cannot be discussed without also hearing from the women whose impairments have led to doctors and carers deciding â without their permission â they must be sterilised in order to prevent the physical aftermath of sexual violence becoming a âproblemâ.
Just today, I read an article about two parents with cerebral palsy who have been âallowedâ to keep their child. The dehumanisation of women with disabilities is appalling, but even worse is the way these issues are marginalised even within feminism.
In Integrating Disability, Transforming Feminist Theory (2002), Rosemarie Garland Thomson explains how both women and people with disabilities are considered âdeviant and inferiorâ within cultural discourse and subsequently excluded from participation in public and economic life.
Other disability theorists suggest the reason women with disabilities have been excluded from mainstream feminist circles is because they are a reminder of vulnerability and lack of control, identities feminists have traditionally sought to reject.
Whereas disability was once thought of as an individualâs medical problem to overcome, following the work of disability activists such as the late Stella Young we are increasingly coming to recognise disability as a problem related to inaccessibility and negative attitudes. Disability, like gender, is a social construct.
Back in 1988, disability theorist Susan Wendell called for a âfeminist theory of disabilityâ as a way to move forward in both disability politics and feminist theory. Wendell argued the oppression of disabled people is closely linked to the cultural oppression of the body. She believed a feminist theory of disability would â[liberate] both disabled and able-bodied peopleâ.
Disability activist Samantha Connor, who was the first to be banned on DTJ for contravening its commenting guidelines, continues to see the importance of mainstream feminism in breaking down power imbalances for people with disabilities. As Connor explained to me:
We are all women, and the issues we face are issues faced by mainstream feminism, not by individuals or minority collectives.
The incident illustrates an important truth: being aware of intersectional oppression in 2015 should not be an optional âextraâ, but fundamental to any social justice movement.
Correction: a previous version of this article contained a paragraph stating that criticism had also been also been levelled at DTJ over allegedly failing to include women with disabilities in their regular count of women who have died as a result of domestic violence or abuse. While that criticism exists, it is not substantiated.
Dr Katie Ellis is a Senior Research Fellow in the Internet Studies Department at Curtin University. She holds an Australian Research Council (ARC) Discovery Early Career Researcher Award studying disability and digital television. She has worked with people with disabilities in the community, government, and in academia and has published widely in the area of disability, television, and digital and networked media, extending across both issues of representation and active possibilities for social inclusion. Her most recent book with Gerard Goggin is ‘Disability and the Media’
If I had a pound for every time someone asked me this question or a less polite version such as what’s wrong with you? Have you always been like this? Were you born in a wheelchair? I would be a millionaire.
Now I know people are curious about disability (even if I don’t really get why) but do we really need a superhero like origin story can’t we just exist? While I generally humour the disability questions, providing people are politely I’m not going to lie it is irritating.
However recently Ive begun to realise all of these ‘origin’ questions are intensely personal and potentially traumatic. While seemingly most of the questions have yes or no answers in reality the conversation doesn’t stop there. For the majority of disabled people it’s either unclear when we acquired our impairments or the result of a traumatic experience. Meaning the answer to ‘have you always been disabled?’ becomes no or I don’t know. These answers invariably lead to more questions or an expectation of an explanation. I was trying to think of similarly personal question and the best I could come up with was why did you get divorced? Whilst some would ask the majority would let the affected party direct the conversation.
Despite having my impairments as long as I can remember and therefore the questions about my impairment for almost as long, until recently I didn’t really feel like I had any option but to answer. In part feeling compelled to answer questions about my impairment comes from growing up in systems which depend on that information to judge my eligibility for support combined with me being the first ‘severely’ disabled person in many of the environments I’ve accessed. However I now question how that information being disclosed to all and sundry has aided me. Yes as someone with support some people need to know what support I need but is do impairment labels or my history communicate my needs… Not fully.
I suspect it has taken longer for me to take ownership of my right not to disclose my ‘origin’ story because I’m a woman as often the refusal to disclose information is often seen as being aggressive regardless of how polite the denial.
I’m not against talking about impairment or disability in fact if we talked about them more maybe the novelty factor would wear off, however I believe that disabled people should have control over their own story and who they disclose it to.
Surely there are much more interesting conversations to be had.
Sisters of Frida were invited again after last year’s participation. Some of us participated at Sparks and lead workshops.
Ciara and Dyi had a workshop: The ability in disability: questioning the idea of being healthy and well-being
This workshop asks what is ânormalâ? It explores ideas around âability in disabilityâ, ânormal healthâ or âhealthyâ. It encourages a curiosity about understanding ableism as a system that affects everyone by dictating what is ânormalâ around ability, including ideas and practices around âhealthâ and âwell-beingâ.
âCiara identifies as an activist, an academic, queer, disabled.
âDyi has been an activist in Amsterdam around issues of gender, race, reproductive rights, and age/generation and now, in London, tries to catch up on issues of disability and sex/uality while fluctuatingly ill and doing a PhD
Dyi was actually not well on the day and Ciara did it on her own with a great interactive discussion on.
The workshop after that was Equality and being inclusive and accessible
Everyone says they are aiming for equality however they do not always factor in being inclusive and accessible. Physical, hidden and logistical barriers can very often prevent people from being properly involved. Although nearly always unintentional, this exclusion has a negative impact on the campaign and access isnt always easy to add on later.
Non disabled people do not always understand what barriers disabled people face in going about day to day activities â eg. having steps to a physical meeting place mean wheelchair users are excluded, having information only available on pdfs mean that blind people who use text reader to access electronic information are left out and if you have meetings that start very early in the morning might mean that people who need personal assistance to get ready or those who have chronic issues might find it logistically challenging to make it to your meeting.
facilitated by Eleanor Lisney, an access adviser who is also a wheelchair user.
Report written by Lani Parker with additions from Eleanor Lisney
People were pleased with the turnout and it was a good opportunity to network and talk to each other.
The film generally had good feedback. There was discussion on many topics, including who the film was
aimed at, the editorial devices which were used (such as changing the subtitles in order to give a “feeling
of exclusion”), and the Indian context. It was felt that it was a good film to get discussion going. We thanked Shweta Ghosh with a little momento (Happy Potter mug) from London.
– Michelle and Charlotte had ideas for showing the film in different places and will get in touch with
Shweta to organise purchase of film and further screenings.
–Â Shweta said that she will write a booklet to go with the film so that issues which have been commonly brought up at the screenings can be discussed and contextualised.
After the film we had a presentation from Stay Safe East (Ruth Bashall and Lucia Bellini) about their work with disabled women, particularly around domestic violence (their remit is slightly bigger than this). There was discussion on the specialist nature of the work running womenâs support groups and the need for further groups like this.
Ruth would like to see the work done around the Serious Crime Bill and domestic violence taken forward to lobby the CPS around their guidance for the bill and they (as Stay Safe East) will be meeting with Women’s Aid shortly. Eleanor and others expressed a wish for Sisters of Frida to be involved with this work.
Eleanor, Ruth and Lucia to take forward work with CPS and Women’s Aid on the issue and the Bill specifically.
There was a discussion about a forum or space for disabled women to talk about sex, sexuality and intimacy. This is a big topic and there are many issues, including lack of information, intersections of identity and oppressions, types of impairments, and PAsâ involvement in relationships. Laki said that there is a need for a physical drop-in as well as information online and perhaps an online forum discussing the issues.
There are many things to consider with an online forum. Ruth said that GAD have a forum but it is by invitation. Seems like a sensible idea to explore along with online safety issues in the future if we were to take forward this idea. The idea would be to have a website and resources, perhaps a forum and an informal drop-in.
–Â Laki and Dyi to set up meeting for Sisters of Frida to start to discuss these issues amongst ourselves and to look at collating resources.
–Â Ruth to send resources she already has access to.
We discussed about funding and future strategy and future steps.
Claire Cunningham started the discussion on Disability and Feminism at the WOW Festival with her speech below. Many many thanks to her for allowing us to publish it here.
I am one of those individuals â whom perhaps some of the panel may despair of! I donât knowâŚ That doesnât really know what the identity of being a woman means for me. I think for me it has been quite eclipsed â in my dealings with others, but perhaps more so in my view of myself, with my identity of being a disabled person. And a disabled artist. And that is partly my own fault because of my fascination with what I have felt that disability that offers to my work. But that is also because I have went on a quite significant journey with that aspect of my identity, and I am not sure that I have gone on the same one yet with regard to being a woman.
Being here â and having been present at Women of the World festival in the last couple of years, definitely are part of that process for me, and of raising awareness in me that there are aspects of my being that I have quite purposely ignored and not dealt with. And like my shifting awareness around disability its a journey taken once you have found the people who shine a light on the subtle difficulties, and differences and behaviours that discrimination creates that you just have not noticed most of your life, because you didnât know any other way.Â Â I grew up just as blinkered about what it meant, or looked like, to be a woman, as I did about what it meant to be disabled.
Iâm going to talk specifically about my journey regarding my perspective on disability, but I know it is just as applicable to viewing myself as a woman. But I just donât think, if Iâm honest, that Iâve convinced myself as much yet on that front. I think there is more de-programming I need to do on myself in that regard. Being here is part of that for me. Deprogramme old and imbedded notions of womanhood and soak up the endless possibilities of what it could meanâŚ
I grew up not wanting to be disabled. I went to âmainstreamâ schools and was the only child in those schools that had a visible impairment, a physical impairment related to Osteoporosis, that meant when I turned 14 I had to start using crutches. I kept thinking I would be off them in 6 weeks, next month, a few months, next yearâŚ.its been 24 yearsâŚ.
I hated my crutches. With a passion. I became convinced â in those awful teenage years -that the crutches, and my physicality meant I was repulsive. I felt very âotherâ.
So I grew up with no role models â no disabled people to show me that it was ok to be disabled. Just the typical western media filled with images of bodies that were non-disabled. This was the ideal. This is how you are supposed to look. Portrayals I did see of disabled people â either they were objects of pity. To be helped. Or movie villains â people who had acquired an impairment and were so bitter about it they would therefore blow up the world as revenge, or alternatively kill themselves at the prospect of living as a disabled person.
So someone no-one wanted to be.
On being asked âWhats wrong with you?â I didnât think twice to tell people what my medical diagnosis was. On being offered the prayers of strangers who wanted to pray that I would be healedâŚ I didnât question this. I was imbued from all sides with the idea â not consciously â that it would be preferable to not be in my state. That of course I would want to be âfixedâ. That there was, naturally, something wrong with me. Or indeed, I was âunnaturalââŚ.
I did want to be fixed.
Then in 2005 I had an epiphany. My road to Damascus moment. I discovered dance. I didnât mean to. It was an accident, I had never intended to dance. I had always thought dance was for-as I would have referred to them at that time – the âable-bodiedâ. Superfit people. People who could move really quickly, and jump and had straight pointy legs and straight pointy armsâŚclean lines. Thatâs not my body.
But what I began to see, was that the way my body had developed and evolved â through using the crutches meant it had great strength, and very specific strength. By that time I had been using the crutches for 14 years. My body had also grown certain skills and knowledge â it understood â without me thinking about it, how the crutches were weighted, how my weight was positioned on them, how to manipulate this skillfully, how to dance with them.
I discovered that giving my crutches to young, super-fit non-disabled professional dancers â they actually couldnât do what I could do.
I began to accept that my use of crutches was offering me opportunity â as an artist, And in recognizing this I began to take on the identity of being a disabled person for myself, as opposed to being identified by others. I began to acknowledge that it shaped my work literally, but also that my lived experience of being disabled meant that I had a unique perspective on things and this was something I began to treasure.
Working in dance brought me into a world where the body is at the centre, its the tool of the artform, and it was now all about letting people see my body and how it moved. Therefore what also came with that was discussions around the aesthetics of bodies. Dance is, to me, the most body fascist of all arts and there is indeed the tradition that only young, superfit, non-disabled (and in this country still predominantly white) bodies are mostly what is seen onstage. Personally I just find this rather boring. My interest has been to push the notion that disabled bodies are not âwrongâ but rather different, therefore present more interesting, unexplored possibilities for movement. More colours on the palette you might say.
I told a leading national (non-disabled) dance company that I honestly wasnât that interested in choreographing for them -âYou all kinda look the same to meâŚâ, I told them. These young dancers were horrifiedâŚ âbut you cant say that! Thatâs discrimination!â
Yes. Yes it is discrimination. Of course I donât truly mean it, but I am not choosing that quite controversial âand loaded- phrase by accident. It is fascinating to me to see the reaction it provokes. To suddenly see people who have assumed that they are in a better position than you, who think they would not want to be you, presented with the idea that perhaps I would not want to be them. Their bodies are not my idealâŚ
Now Iâm not saying being disabled is a wonderful or easy thing. I donât in any way mean to underplay or be flippant about the experience of those who have much more limiting or debilitating medical conditions than me, and who do face huge problems in terms of discrimination or lack of opportunity. But I do know many disabled people that have said openly to me that they would not want to be otherwise. Of course that is not true of everyone, but I feel that if we can start to shift the way disability is viewed, to a more acceptable, positive and valid experience, part of the diversity of humanity rather than a mistake, then it will only help everyone.
The natural progress of the human body as it ages is to develop impairments. Its a loss and therefore people grieve itâŚ.but it is natural. And as long as we treat disability as being something inferior, or shameful, we make it harder for everyone. This may seem a little flippant to some but -who doesnât know a grandparent or ageing parent who is losing their hearing or developing difficulty walking but refuses to get a hearing aid, to get a walking stickâŚ? I believe that the shame around disability is very much linked to this. The idea that the state of disability is inferior and undesirable reinforces this.
Disability, for me, is a state of existence, a way of being in the world. It is related to having a medical condition, and to how I am treated in the world, and the perspective that gives me- but it is not everything that defines me. I have and can have many identities -Iâm a human being. Iâm Scottish. Iâm short. Iâm white. Iâm an artist. Iâm a European. Iâm an aunt. Iâm single. Iâm a homeowner. Iâm a daughter. Iâm a thirty-something. Iâm a sisterâŚ. Iâm a womanâŚ.
And Iâm disabled. I would not want to not be disabled. I would not be the person I am. No offence to any of you out there whoâs not disabled, Iâm sure youâre great, I really wouldnât want to be youâŚ.
Iâm doing fine nowâŚ.
Frances Ryan wrote a great article – âIt’s not only steps that keep us outâ: mainstream feminism must stop ignoring disabled women’ where she states that in matters of sex, sexuality and political campaigning, the resurgence of mainstream feminism overlooks disabled women.
Feminist and disability rights are born from a similar cloth. They are battles to acknowledge that oppression doesnât come from a biological reality but a socially constructed inequality. They are concerned with idealised human bodies. They fight the structures and power that wish to control them; in sex, in work, in reproduction.
Non-disabled feminists continue to treat disability as aside issue, an optional extra and in no way part of the so-called mainstream academic or political debates. The disabled people’s movement – while many and sometimes the majority of its activists are women – is still informed by political and theoretical debates which strangely sidelinewomen’s experiences and issues.
SoÂ mainstream disability do not often recognise women’s issues neither. I spoke on intersectionality and disability at the Sisters of Frida’s gathering/party at WoW Festival at the South Bank
Disabled women who are discriminated against â from feminist communities, LGBT, faith communities because they insist on congregating in non accessible venues. And the segregation is also from the disabled peopleâs communities because they do not understand nor interested in other identities. Where do disabled women go to discuss about the roles of being disabled lovers, mothers if they were given the opportunity of being girlfriend, wife or mother. And there are those whose sexuality were being denied or even sterilised (often presumed to be for their Â own good). And who knows how to support them when they are raped? A report by Professor Betsy Stanko,Â stated that the ârape of vulnerable women, especially those with learning difficulties, has effectively been âdecriminalisedâ.
I guess I am speaking about the need for intersectionality also when we talk about disability â that we have more than one identity and we ought to acknowledge that â and that we should acknowledge we need a space for disabled women as disabled women, we need to listen to the different identities. And feminism needs to accommodate intersectionality too â speaking as a disabled woman of colour when I can be the only non white disabled at the table I feel a double disconnect. I m sure some of you here know what I m saying where you stop wanting to engage as a form of self protection.
Just this week we pointed to an event about campaigning black women that they had not included black disabled women in their program and offered to fill that gap. And they are responding positively so we might be the first to explore disability, gender and ethnicity/race in a workshop!
As Sisters of Frida, we went to meet the Special Rapporteur at Leicester. She has given her report –
‘Special Rapporteur on violence against women,Â finalizes country mission to the United Kingdom and Northern Ireland and calls for urgent action to address the accountability deficit and also the adverse impacts of changes in funding and services’
Rashida Manjoo wrote
It is important to recognize that the reduction in the number and quality of specialized services for women does impact health and safety needs of women and children, and further restricts them when considering leaving an abusive home, thus putting them at a heightened risk of re-victimization. Access to trauma services, financial support and housing are crucial, yet current reforms to the funding and benefits system continue to adversely impact womenâs ability to address safety and other relevant issues.
Many of the front-line service providers that I met in all parts of the UK have told me that they face increasing demands for providing more services â including for men, while there are fewer funding opportunities. I was also informed of how additional duties undertaken by third sector organizations, such as in their involvement in Multi Agency Risk Assessment Conferences (MARACâs) is not accompanied by more government funding, and is thus being undertaken at their own cost.
Furthermore, it was made clear to me how women from black and minority ethnic communities, women belonging to the LGBTI community, and women with disabilities, are further affected by these cutbacks. These women are, for many reasons, often linked to entrenched discriminatory practices in the political, social and economic spheres, and are more likely to depend on benefits and on support from an increasingly under-resourced non-profit sector. Unfortunately, it is precisely the specialized services catering for these women, which are being mostly affected, even more so than the mainstream violence against women and girls services, in many instances.
Much of the report touched on issues that affect disabled women on an intersectional level especially when you consider that many incarcerated women have also serious mental health issues.
It is crucial to recognize that violence against women is rooted in multiple and intersecting forms of discrimination and inequalities, and strongly linked to the social and economic situation of women. Therefore, the intersections between gender-based discrimination and other forms of discrimination that contributes to and exacerbates violence against women should also be taken into consideration when designing and implementing the Stateâs response.
Considering their higher rates of victimization, the specific experiences and needs of black and minority ethnic women and girls who have experienced violence, need to be acknowledged. Specific taskforces or working groups, with representation from these communities, should be set up to ensure effective policy and programming around violence against them.
Ms. Rashida Manjoo (South Africa) was appointed Special Rapporteur on Violence against women, its causes and consequences in June 2009 by the UN Human Rights Council. As Special Rapporteur, she is independent from any government or organization and serves in her individual capacity. Ms. Manjoo is a Professor in the Department of Public Law of the University of Cape Town.
Learn more, visit: http://www.ohchr.org/EN/Issues/Women/SRWomen/Pages/SRWomenIndex.aspx
This article by Kirsty Liddiard was first published on the Shameless Mag.Â
Kirsty will be coming back back to the UK summer 2015 – we look forward to hearing more from her.
In the dis/ableist cultures in which we live, disabled peopleâs(1) sexual selves are seldom acknowledged. We are, almost routinely, ascribed an asexual identity(2), where we are assumed to lack any sense of sexual feeling and desire. We are also deemed sexually inadequate because of the ways in which our distinctive sexual pleasures and practices, and Othered bodies and minds, contradict deep-seated sexual norms. Rather confusingly, some disabled people, typically those with the label of cognitive impairment, are considered to have sexualities that they canât understand â a âhypersexualityâ that they canât control; and sexual desires that are somehow âdeviantâ or dangerous to others. Further, where we are avowed a sexual identity, it is usually only within the realms of heterosexuality, leaving LGBTQQI2-S(3) disabled people further marginalized.
Within this, the sexual and intimate lives, selves and bodies of disabled women are further marked by patriarchy, sexism and misogyny (the hatred or dislike of women or girls). For clarity, I use the term patriarchy to refer the social hierarchy through which (cisgendered) males hold the greatest privileges in terms of social and sexual power. Intersecting with disability, patriarchy, sexism and misogyny mark disabled womenâs lives in particular ways. For example, through our forced sterilization (taking away our ability to give birth); through our higher rates of sexual and intimate partner violence; through the broad denial of our sexual selves; through the chastising and punishing of our sexual desires within institutional spaces (like group homes) (particularly LGBTQQI2-S disabled people); through inhibiting our rights to love and be loved; through denying our rightful access to sexual support, information and education; through barriers within sexual and reproductive healthcare; and through the typical shaming of our sexual bodies, desires, and pleasures.
In this article, I write as both a disabled woman and a researcher. I discuss the sexual and intimate stories told by disabled women through my doctoral research which sought to explore the relationships between disability, sex, intimacy, and love. Crucially, I bring forward the voices of these women, applying their own words to embody the issues discussed. I do this not only because, politically, itâs important that my voice isnât the only one (re)telling peopleâs stories, but because it offers the opportunity to identify, or relate to, the stories and words of others â regardless of disability status. Far from being âdegenderedâ or stripped of gender, as disabled women often are in our culture, disabled women in my research told their stories first and foremost as women. While the women in my research identified as cis-women, I use the words âwomanâ and âwomenâ in this article with a broad, inclusive and diverse understanding of âwomanhoodâ; one which is inclusive of all cis, trans, and gender-queer women. While this is my personal anti-oppressive definition of woman and women, this study does not provide a trans-inclusive analysis of experiences with sex and disability, since participants identified as cis-gendered women. Therefore, my aim here is to (re)tell these intricate and intimate stories, drawing attention to the pleasures, fears, loves and uncertainties most prominent within disabled womenâs stories about their own lives.
Secret Loves, Hidden Lives While the individual stories of both disabled men and women were marked in different ways by gender, race, class, nationality, age, religion, impairment type (e.g. sensory/physical) and the origins of impairment (whether acquired or congenital/from birth), disabled womenâs collective sexual story was distinctly molded by heteronormativity, heterosexuality, and patriarchy. While heterosexuality is a sexual orientation, heteronormativity is the idea that heterosexuality â as a sexual preference, lifestyle, and societal institution â is the set norm from which all other sexual orientations and identities deviate. Noticeably, most women in the research tended to speak through a veil of (sexual) shame, embarrassed to articulate their pleasures and desires. It also wasnât uncommon for whole chapters of womenâs stories to be dedicated to their self-hatred and lack of body and sexual confidence, and there was an identifiable collective feeling of not embodying ableist and sexist ideals of womanhood âproperlyâ or âappropriatelyâ enough, for both themselves and their partners.
Sally(4): âWho would want to have sex with me when there are plenty of normal girls more than willing?â
Lucille: âI felt so bad about not wanting sex [after injury] that I kept telling him to have an affairâ.
Jenny: [After a date] âHis father came out to my car and told me to fuck off. He [boyfriend] didnât have any disabilityâŚ He said âfuck off you cripple and leave my son aloneââ.
This lack of confidence was further emphasised through womenâs descriptions of their roles within their sexual and intimate relationships with others, and their own experiences of sexual pleasure and desire. While both men and women expressed great frustration at typically ableist (hetero)sexual norms â norms which dictate a fully-functioning, autonomous, mobile, âsexyâ, strong and supple body for physical, penetrative, goal-orientated and genitally-focused activity â disabled men, for the most part, could negotiate a more empowering sexual role within their sexual lives and build a positive sexual identity.
For example, most men could often successfully negotiate dis/ableism(5), bodily impairment and constructions of masculinity (many of which are deeply oppressive for disabled men) to claim a gendered sexual self with which they were happy; one underpinned by body confidence and self-love, and through which they could experience sexual pleasure and desire without shame. Disabled menâs greater social and sexual power (afforded to them through patriarchy) also ensured greater practical sexual support from attendants, carers, and parents, which enabled better access to sex and sexuality than disabled women. In contrast, the majority of disabled women didnât have the esteem or confidence to negotiate a desired role in sex; nor could they find a route to body confidence and self-love. Many women reported receiving little support within their sexual lives, saying that their desires were often overlooked by the people who provided their care. Most felt unfulfilled, inadequate and frustrated. All of these issues are compounded for LGBTQQI2-S disabled people (particularly disabled Trans people) whose identities often remain unrecognizable and Othered in the context of care and caring.
Rhona: âAlthough I knew that he adored me, I also always felt slightly as though I didnât deserve him. I am a logical person, and I know that disability puts you further down the relationship league table.â
Jane: âI am unhappy [in the relationship] a lot. But Iâm scared no one else would accept me. I just think people donât accept people who are different.â
For some, a lack of self-love was compounded by experiences of violence. Disabled women experience higher rates of sexual violence than both disabled men and non-disabled (âable-bodiedâ) women (Canadian Womenâs Foundation, 2011). These experiences of violence are heightened by the lack of privacy which is endemic to the disabled experience, but also by the fact that there is very little service provision for disabled women to report or escape sexual, physical and emotional violence. For disabled women of colour, aboriginal women, immigrant and refugee women and Trans women this can be further exacerbated by racism, ethnocentrism, xenophobia and transphobia. Therefore, a lack of violence support services which are accessible, culturally-appropriate and knowledgeable about LGBTQQI2-S issues adds to the problem.
Grace : âHe wanted (and got) sex at least twice a day every day. Sometimes we had sex more than twice a day â even up to five times a day. It didnât matter if I had my period or if I felt unwell or was pregnant. He wanted sex. If I refused, he made my life a misery, sulking and getting angry and taunting me. It was easier to do as he wanted. I seldom ever enjoyed it. And there was my deafness. I had left school with no qualifications, no career [her education was inaccessible]. A dead end job and an early marriage and children meant I had hardly any skills outside the home. He isolated me from my friends. He could not cope with me being deaf; as my deafness increased, he found it harder. He did not want a deaf wife. He hit me a few times.â
For other women, the difficulty in claiming positive sexual selfhood was further ground in the loud silences which surround the (sexual) lives of heterosexual and LGBTQQI2-S disabled women in mainstream culture. Representations of our sexual lives, selves and bodies seldom feature anywhere within popular culture. Where they do â for example, in films and on television â we are usually depicted as sexless, burdensome and pitiful. Interestingly, disabled peopleâs own (rights) movements have historically echoed this silence; it is only relatively recently that sex and sexuality â disabled peopleâs sexual politics â have been loudly and proudly placed on disability rights and justice agendas.
Gemma: âAnd, he [doctor] was just totally embarrassed. I thought âhow bizarreâ, he just didnât want to tackle it at all. He was totallyâŚaghastâŚdidnât comment and carried on [laughs]âŚ I think having a couple of lesbians discussing their orgasms was not what he had in mind [âŚ] I just think thatâs quite telling, really.â
Helen: âWhen I was younger I remember this one guy at school said âCan you have sex?â I was like âYeah!ââŚ Getting people to see past the chairâŚ itâs difficult.â
Cripping Sex: What is a sexy body? While many seldom recognised it â or had the resources to claim it â the stories of some women explicitly showed the sheer and utter sexiness of difference and disability. Bodies which are both classified and labeled as impaired, ânon-normativeâ, or different can truly challenge societyâs prescriptive ideas of what constitutes a sexy body. These unique bodies can also radically crip(6) â or disrupt â sexual norms, opening up new possibilities and potentialities for pleasure. For example, some people spoke of experiencing many different types of pleasure outside of the quantified, measured, and charted key stages within the human sexual experience of arousal, climax and orgasm â aspects of sexuality which are aggressively positioned as necessary, even compulsory, within sex. I quickly realised that our cripped and queered bodies can subvert and expand sex in spaces where, for non-impaired (âableâ) bodies, the scope for transformation may be limited.
Rhona: âSex was brilliant, and we both enjoyed each other immensely: Intimacy, proximity, sensations, comedy, lack of control, feeling desired, being treated roughly and not as though I might break. It is also one of the few examples of when my body allows me a âtime-outâ, and I feel liberated. Done right, it is all pleasure and no pain.â
To go a little further, it is our beautifully complex bodies and minds which offer a glimmer of how conventional bodily pleasures, only ever physical and bodily, can be cripped and queered, in order to expand âsexâ to include our minds, senses, imagination and spirituality. For example, the imagination was a central form of eroticism for many of those who took part in the research. Many women said that their imagined erotic experiences were the times when they felt the sexiest and most turned on. Others, who had displaced erogenous zones (which can result from spinal injury), could orgasm through stroking arms or feet. For example, one disabled man who had found it difficult to orgasm in the conventional way discovered that he could orgasm through his partner stroking his shoulders. This inevitably led to many nights of shoulder strokingâŚ and shows how disabled bodies can expand and envelope pleasure in new, exciting ways.
Hannah: âSo that was an eye opener, that wow, an orgasm through touching above the injuryâŚ itâs amazing reallyâŚâ
Others de-centred the orgasm or traditional gendered roles within their intimate practices all together, usually on the grounds that these rigid sexual norms just didnât fit their embodiment (their experiences of their bodies). One couple decentered the orgasm because, they said, relentlessly âchasingâ it was becoming overwhelming. As such, they found that their closeness, intimacy and affection grew immeasurably once they had learned how to have a great sex life together without orgasm. Others explored how the spasticity of muscles (which can occur within any number of conditions, such as Cerebral Palsy and Spina Bifida) could enhance and their orgasms and enrich their experiences of pleasure.
Lucille: âI canât feel any sensation that one would normally have but the way I feel does change in a way I canât describe. Teamed with my imagination it can be very pleasant, makes me feel sexy.â
Others got great pleasure from being treated roughly, as a departure from the ways in which their bodies were (routinely) treated as though they were inherently breakable or fragile. Further, while many found that disability could mean a lack of spontaneity in sex (spontaneity, I add, which is depicted in every Hollywood sex scene âcos, apparently, sex needs zero discussion), they also said that planning made sex more enjoyable, and that it enabled the development of more elaborate and imaginative sex play.
For some, the presence of disability and bodily difference were a means to reject what disability scholar Tom Shakespeare (2000: 164) calls the âCosmo conspiracy of great sexâ. This is the (false) idea that all people are having incredible sex, all of the time â which just isnât true. The sexual stories collected in my research showed that enjoyable sex isnât natural, but takes work: open discussion with partners; understanding a partnerâs likes and dislikes; lots of experimentation with sex and pleasure; and lots of work on the intimacy which can precede sex. While disability was the impetus for many of these intimate labours, these alternative sexual ways of being suggest that there is much to learn from disability when it comes to sex and intimacy.
To sum up a little, these experiences emphasize how crucial it is for disabled women â and all women and girls â to reclaim âsexyâ from the deeply oppressive ways in which it is proliferated and maintained in our cultures: a mode of sexuality that is considered ânaturalâ but is, in reality, anything but, being routinely learned and relearned; taught, policed, and regulated throughout our lives.
ConclusionsâŚ I finish by asking, then, how can all of us strive to become shameless in our sexual lives? How can we rid ourselves of the shame that is often endemic to our experiences, lives and bodies, regardless of whether we â as women â live with disability, or not? The storied lives of disabled women in my research have shown this can only happen by sharing our stories, lives and experiences. Stories can â if voiced and heard â be productive, useful, and valuable. Stories can define a place and people. They offer a sense of collective experience; a means to claim space, foster a positive identities and experiences, and demand social and sexual justice. Collectively, telling and sharing our stories is how we can build sexual cultures and communities as we want them; ones which fit all of our bodies, pleasures and desires; ones which empower rather than oppress. So, whatâs your sexual story?
Kirsty Liddiard PhD. is currently the Ethel Louise Armstrong Postdoctoral Fellow within the School of Disability Studies, Ryerson University, where she lectures and teaches on a range of disability issues. Kirsty considers herself a proud disabled woman and activist, critical disability theorist, and feminist. You can read her at email@example.com.
â˘ Canadian Womenâs Foundation (2011) The Facts About Violence Against Women. Online. [Accessed 09.11.2013]. Available online here.
â˘ Shakespeare, T. (2000) âDisabled Sexuality: Toward Rights and Recognitionâ, Sexuality and Disability, 18: 3, 159-166
We are very proud that one of the Sisters of Frida, Michelle Daley, was interviewed on STM (SHoot the Messenger) Vox Africa.
She spoke on being a disabled black woman in her community.
We apologise for the lack of a transcript. If anybody can help with that please let us know.
It is a great resource – sexualityanddisability.orgÂ is brought to you by (CREA ) and Point of View . Based in Delhi and New York, CREA is a feminist human rights organisation that promotes, protects and advances the sexual rights of all people; as part of its programs, it runs an online course on disability, gender and sexuality. Based in Mumbai, Point of View is a non-profit platform that brings the points of view of women into mutliple domains through media, art and culture.
We would recommend browsing the website.
sexualityanddisability.orgÂ is constructed as a bunch of questions a woman with a disability might have – about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, about unvoiced fears or experiences of encountering abuse in some form.
sexualityanddisability.orgÂ discusses a wide range of topics related to sexuality without shying away from them – parts of it are explicit. People have different views of what is and isn’t appropriate and we’ve included them all.
sexualityanddisability.orgÂ is accessible to people with disabilities; special features have been included to ensure this.
sexualityanddisability.orgÂ has been created with the active support of women with disabilities, disability rights activists, counselling professionals, and organizations working on disability.Â More and more women with disabilities are reclaiming their sexual selves, speaking out throughÂ blogsÂ ,Â filmsÂ ,Â booksÂ ,Â performancesÂ ,Â websitesÂ Â and offline activism.
sexualityanddisability.orgÂ aims to provide women with disabilities and related constellations – partners, families, health workers, counsellors, organisations – a platform to explore this further.