Bringing disabled women together, mobilising
and sharing through lived experiences

This was published in May 2022

Gender, Disability, and the Environment

see transcript for discussion

On 24th March, Sisters of Frida (SOF) and the National Council of Women of Great Britain (NCW) hosted a discussion, titled ‘Gender, Disability, and the Environment’. The panel consisted of Khairani Barokka, Asha Hans, Rhine Bernardino, Harrie Larrington-Spencer, as well as Carmen Yau (who chaired the session).

In line with the 66th Commission on the Status of Women, an annual two-week global conference, SOF and NCW contributed to the priority theme of ‘Achieving gender equality and the empowerment of all women and girls in the context of climate change, environmental and disaster risk reduction policies and programmes’. Drawing on the experiences of disabled activists and researchers from various countries, this event examined crucial environmental issues in relation to disability, including eco-ableism, inclusive sustainability, accessibility and nature, as well as interconnection and disability climate justice. Surprisingly, the intersection between disabled women and the environment is a largely untouched topic of discussion. Yet, during the event, panellists provided clear examples of the significant challenges that the environmental crisis poses to a vast majority of Deaf and disabled women across the world.

Climate change policies, environmental decision-making and contingency plans have often failed to include Deaf and disabled women. With the rising sea levels, flooding and snow melting, disabled women are more likely to face serious consequences as they are likely to experience poverty. For example, disabled women in India who work as farmers are likely to be forced into migration and have their livelihoods taken away as they can no longer provide for their families in climate-affected regions. With increasing pressures to feed families, 70 per cent of food is needed but agriculture is an impossible reality for disabled women in India.

Another challenge is setting up cyclone shelters, creating infrastructures to find them and making sure that they are friendly for disabled people. Climate disasters, such as typhoons in the Philippines, also underline the expected responsibilities of disabled women to carry out domestic duties, including the burden of survival, looking after the family, and dealing with emergency situations which are caused by climate change. In addition, environmental issues place additional pressures on indigenous disabled women, who are disproportionately affected by land ownership and weapon manufacturing.

Transport justice also offers an important aspect which needs to be considered within this debate. Inclusive active travel with different forms of mobility aids and types of sustainable transport, such as cycling, can help to reduce carbon emissions and challenge traditional stereotypes associated with masculinity in the United Kingdom. Disabled people are commonly spoken over in this discussion, overlooking the additional problems that disabled women often encounter related to abuse, and protective measures.

With unexpected climate crisis challenges and issues, disabled people are faced with greater uncertainty. Disabled women, including indigenous sisters, need to be at the table when discussing environmental policy, and consulted in decision-making processes. Deaf and disabled perspectives must be included in the conversation of climate change – we need to be heard in all the invisible spaces that Deaf and disabled women live in. Grass-roots communication with disabled women in local communities and governmental recognition of these perspectives are therefore central to finding more effective, disability-inclusive solutions, and mitigating the current and future environmental challenges. Ultimately, there is no climate justice without disability justice.

Report by Kirstie Stage

We deserve more

It’s been a pretty shitty 2 years and a little bit of pandemic, and so much more. The usual cares of life as a disabled woman did not pause, but were turned up, and our support structures, escape hatches, and pressure release valves were removed.

No amount of home spa kits, emergency chocolate, meditation podcasts, journaling or posters of kittens telling us to hang in there is going to get us out of this. They might get us a brief moment of joy or motivation, and are worth doing for that alone, but that’s not enough. “In case of emergency, eat chocolate” doesn’t work when there’s a new emergency every day, or an ongoing battle to simply survive.

I’m sick of Self-Care. I know, that’s unthinkable, but I’ve said it and I’ll stick by it. I’m sick of being told to “take care” and “hope” and finding nothing better to say to others. In these times, it’s not enough. I need more words and I don’t know what they are. Netflix and a cup of tea and a snack might get me breathing right again, but it’s not enough. We need more than Self-Care – we deserve more than Self-Care.

We are told the idea that in a world that pushes you back with negative attitudes, loving yourself and showing that through acts of self-kindness is the most radical thing you can do. It has it’s uses, but it’s nowhere near the top of the list. Entire industries and billions in profit have been built from the attempts of the rightfully upset to avoid being crushed by the steamroller of life.

Radical Self-Empathy goes a step further, and may offer another level of relief: It’s OK to be sad that more than a thousand people a week are dying from Covid-19 in the UK. It’s OK to be angry about the things that have happened, and are happening, to you and around you. You feel how you feel, and you have a right to own those feelings.

You can take it a step further, and show Radical Empathy to others, and say “That’s shit” and “O fuck” when something bad happens to someone. I find it more comforting than “take care”, but some others may not find mutual swearing in any way an improvement to the situation.

Even when Radical Empathy, whether shown to ourselves or others, is performed to perfection and meant sincerely, it’s not enough. Sometimes I just don’t want to share how I feel, or put the knowledge of something terrible into someone else’s brain (though I know my friends want me to not hold anything back), or to be validated about something I already know to be true. Though sometimes I do. We need more than empathy – we deserve more than empathy.

We are told in a world that ignores your feelings and the feelings of others, taking time to understand and showing empathy is the most radical thing you can do. It has it’s uses, but it’s not a full solution. Entire industries and billions in profit have been built by the urge to show off just how much we care, flowers that die in a week and gift cards made of deforestation; and the need to have difficult conversations and confront reality, from 24/7 news channels to self-help books and tech-giant sponsored Youtube videos of how to unroot discriminatory ideas from your brain, fuelled by the worthwhile desire to not be that asshole who made things worse by denying that people are being crushed by the steamroller of life.

Restorative justice is the next level often recommended to deal with a situation that’s hurt someone. “You could write to them.” “That’s not legal.” “You can get compensation for that.” It’s powerful, and often satisfying. It can protect our futures, and those of the next generation. But it’s hard, and takes more energy and time than may be available, or healthy and sensible to give. It involves a large number of people agreeing to change, the barriers can be huge, and unjust themselves.

In some situations, there is no justice to be had. No matter what is done, no matter who apologises or changes their policy or overhauls the entire structure of what they do, what has been taken can never be returned. Restorative justice cannot restore before. You can’t fix it, not always. You can stop it from happening again, sometimes, but that’s as far as it goes. Justice isn’t enough. It could never be. We need more than justice – we deserve more than justice.

We are told the idea that in an unjust world, fighting for universal justice is the most radical thing you can do. It has its uses, but it’s not a complete solution. Entire industries and billions in profit have been built from the attempt to dismantle the steamrollers of life, but it won’t restore those who were and are being crushed by them.

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

By an Anonymous Author

Straddling Identities

I belong to a few communities, but they do not often link up. It feels like parts of my identity are not visible or ignored by the other parts. This feeling of being an outsider is exacerbated during a crisis like the pandemic, as a disabled woman of colour of East/Southeast Asian heritage. Needing to shield and self-isolate (as a disabled person ) made time to reflect and organise differently. I had started to connect with ESEA Facebook and Instagram groups and started attending events. But not all venues/community centres are wheelchair accessible, and I am saddened by that. As a disabled activist, I frequently call out on such venues because there is legislation against this but I am loathe to do this in my own community spaces. Is this a double standard on my part? I am being excluded by my own community – in a space where I can use my mother tongue.

As I write, it is Disability History Month (DHM) (18 November to 18 December). Most people know of the Black History Month (BHM) but not many know of the DHM, not even disabled people themselves. Due to COVID19 restraints, I did some online interviews of the intersection of being disabled and people of colour, including with disabled people from the ESEA community to mark DHM. There is a theme each year and last year it was on Access, this year it is Hidden Impairments and Disability, Sex and Relationships.

There has been none themed yet on intersectionality and so last year I collaborated with a few disabled friends of colour on online videos on how they perceived themselves with the interlinking identities of being disabled and people of colour. Amongst them were people from the East and Southeast Asian communities. Disabled people are found in every sector of society – we are very diverse with a cross section of impairments: physical, visible, learning disabilities, mobility, vision, hearing, neuro diverse. Some of us have our impairments from birth and some have acquired impairments from accidents, illnesses or they can be age or mental health related. One barrier, among others, we all share is the stigma from being disabled. This stigma is even more pronounced among Black and minoritised communities, we are less likely to self-identify as disabled.

Disaggregated data has been signalled as very important in UN shadow reports such as the CRPD (Convention on the Rights of Persons with Disabilities) and CEDAW (Convention on the Elimination of All Forms of Discrimination against Women) and certainly in the pandemic, to ensure that everyone is included when it comes to strategy and policy decisions. However, data as regards to gender, race, sexual orientation etc – all the protected characteristics are not always recorded. At Sisters of Frida, a Disabled women’s collective, we did a report on Disabled Women’s perspectives and how COVID19 has impacted on their independent:

Our briefing ‘The Impact of COVID 19 on Disabled Women from Sisters of Frida’ illustrates that most Disabled women are already on low income. We are more likely to provide domestic care, less likely to be employed, and are less financially independent. We also know that women do not all have the same life experiences and this needs to be reflected in policy making. For example, Disabled women of colour are disproportionately disadvantaged due to racism, disablism and sexism. Disabled lesbians face social exclusion from the LGBTQIA+ community and disability rights groups. While some data exists on some matters affecting Disabled women such as unemployment, intersecting identities such as race, class, sexuality and gender diversity are not taken into account. Therefore, when considering policy on disability issues, it is important that different Disabled women’s experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.

Data on how the pandemic has affected the ESEA community is not easy to extrapolate. There are reports such as on Filipino nurses in the UK. However, as far as I know, there is no data breakdown on ESEA disabled, let alone on how they are affected in the pandemic. We can venture a guess on the disruption of family lives because of lockdown. BIPOC/ BAME older folks and disabled tend to have a higher dependence on family members for care duties. I did a video as part of the Sisters of Frida’s report above in which I spoke about the impact of COVID19 and briefly on ESEA racism. However, I think my friend, James Lee, speaks best on this point of being both from the ESEA community and being disabled during this pandemic. James is a disabled consultant who consults for grant funding organisations. His parents are immigrants from Singapore. He remarked that as a disabled person of colour, he is hugely influenced by his parents who are also both disabled people of colour.

On my question (in my interview with him) as to whether the pandemic and the specifically discrimination and violent attacks on people of East / Southeast Asian origins, affected him or if he had any thoughts on that, he responded:

I think that clearly there was a demonstrable rise in racism and in hate crime incidents against people who were of the Southeast Asian heritage or appear to have a Southeast Asian heritage and that all started with I think some of the unhelpful rhetoric on around the world about how we talk about the virus about where you know people deemed case zero to be as it were where people felt the origins of the virus came from.

A lot of that was driven by some of the unhelpful rhetoric around that … It was frankly racist rhetoric – calling things like the China virus and so forth. … It’s horrendous that that happens, I think that if you are a disabled person of Southeast Asian heritage you feel and you have the danger of feeling an even more acute vulnerability to that, and I hate the word vulnerable, I hate to use, I know we use it so much when we talk about disabled people in the context of COVID but I’m talking about vulnerability in the context of hate crime here.

We know that hate crimes against disabled people are hugely underreported; that they are rarely followed up that they rarely end in any form of judiciary action.

To be both disabled and a person of Southeast Asian heritage, I think puts you at an even greater … it leaves you feeling so much more exposed, so much more targeted and singled out. And it may well be that the people all around me that the thought had never crossed their mind to say anything that was racist or to say anything that was ableist. But there is a level in which we talk about internalized ableism we talk about internalized racism and there is a level to which that you can’t help but have that creep into your psyche a little bit. To the extent where you know – I would go to the shops and I think all right – do I, you know – are people looking at me more?

So I’ve got what I like to think is a relatively thick skin. I’ve been a wheelchair user for a very long time I, you know, don’t bat an eyelid at the occasional lingering glance or the occasional, you know, I almost said longing stare. There the occasional, the occasional lingering glance or like if someone looks at you and you know that they’re thinking something or you project that they’re thinking something slightly unkind as disabled people may do but I think that that combination of factors – the prevailing mood of racism at a time when there was also this huge issue with disability hate crime is just – it’s not a pleasant combination.

Realising the different identities and my own specific heritage, I applied to be one of the directors of the End Violence and Racism Against East and Southeast Asian communities (EVR) and am honoured to be accepted. I hope to work for the identities I belong to with the passion I feel for justice, equity and inclusion for everyone.

– Eleanor Lisney

This article was first published by ESEA Hub.

City of Women London

This collaborative public history project ‘City of Women London’ aimed to redraw and reimagine the classic London Underground map to produce an alternative map, replacing existing station names with the names of remarkable female or non-binary Londoners who have had an impact on the city’s history.

Led by writer Reni Eddo-Lodge and actor Emma Watson, who worked with writer and activist Rebecca Solnit and partnered with Transport for London (TfL), the project – called City of Women – draws from figures in arts, sports, activism, science, media, law, medicine and beyond. The digital version, led by Dr Leah Lovett (UCL Centre for Advanced Spatial Analysis), allows people to learn more about each person and their lives. The online map launches with featured biographies and interviews from contemporary women and non-binary people.

Let me start by setting the scene: I’m using the curvature of the sofa arm to
rest across, the cushions are being pulverised into the crook of the chair as
my elbows press down, my hair is pulled back, and for a brief second, I no
longer remember which way is up. The lack of perspective adds layers of
pleasure and sweetness only misdirection can give. It is bliss. The bath I had earlier keeps my hips flexible to my partner and the painkillers prevent the pleasure subsiding into pain. All this in the name of sex. Brilliant, amazing sex with somebody I love.

In the background is a not so distant memory of a charity advert. At first
watch, it brought me tears. The message: arthritis has stolen intimacy from
someone you know. Originally, I couldn’t get my head around the idea of it.
Was it supposed to be saying I was too disabled to have sex? Or was it simply saying that sex wasn’t natural for somebody like me? I understand that everybody experiences arthritis differently. It’s the one thing I find most beautiful about living with a chronic illness within a disabled community. Every day comes with a multitude of differences, and no two are experienced the same. Diversity and adaptability are superpowers in the face of all the you can nots we are told.

So why did they see this advert as fitting? Intimacy is not a privilege reserved for some, nor is it stripped away completely by chronic illness. Sex is not a three-step recipe of getting it up, getting it in and getting it off. There are so many more nuances and experiences to be had in sex than just those three.
There is touch and sensitivity, blindfolds and descriptive play, toys and cotton buds. We have hoists that double up as swings, and hand grabbers that pinch. There is a realm of imaginative play that belongs to every one of us if we choose to express ourselves in that way.

The first time I saw this advert I was furious at the implications it made. The second time it came on I was prepared to prove it wrong. I’m not saying sex is the answer, but it sure as hell made me feel better. Collapsed on the sofa after recovering with my partner I realised something important: closeness isn’t defined by somebody else, nor a pity-seeking advert. It was the way we melted together, and how we laughed at the silliness of it all. It’s in the shared state of vulnerability and trust that makes it intimate, not in the way others seek pleasure. So, to my sisters out there, let me say this; when the world tells you that you are too different to be human, remember that sex is revolutionary. Be proud of who you are in all your difference because, in the face of ableism, orgasms are activism.

Heather splits her time writing YA novels and studying a BSc in Nursing at Canterbury Christ Church University. Diagnosed with Rheumatoid arthritis at the age of 13, writing has become a vital component of pain management
and expression in her life. Her debut novel, Murder the March Hare, will be published later on this year. Find her on twitter @HevJaneLyall or on
Instagram: heather_jane22

this is part of the Sister Stories series.

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.

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.

——————————————————————————–

The Spark is a completely free festival of ideas, discussion, art, performance and more looking at how we can bring about positive change here in the UK and around the world 20 – 26 July 2015.

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 ‘normal’? It explores ideas around ‘ability in disability’, ‘normal health’ or ‘healthy’. It encourages a curiosity about understanding ableism as a system that affects everyone by dictating what is ‘normal’ around ability, including ideas and practices around ‘health’ and ‘well-being’.

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.

Next steps

– 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.
–  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 women’s 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 PAs’ 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.

–  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.

–  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 – whom perhaps some of the panel may despair of! I don’t know… That doesn’t really know what the identity of being a woman means for me. I think for me it has been quite eclipsed – 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 – 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 didn’t know any other way.   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.

I’m 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 don’t think, if I’m honest, that I’ve 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 mean…

I grew up not wanting to be disabled. I went to ‘mainstream’ 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 year….its been 24 years….

I hated my crutches. With a passion. I became convinced – in those awful teenage years -that the crutches, and my physicality meant I was repulsive. I felt very ‘other’.

So I grew up with no role models – 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 – either they were objects of pity. To be helped. Or movie villains – 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 “Whats wrong with you?” I didn’t 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 healed… I didn’t question this. I was imbued from all sides with the idea – not consciously – that it would be preferable to not be in my state. That of course I would want to be ‘fixed’. That there was, naturally, something wrong with me. Or indeed, I was ‘unnatural’….

I did want to be fixed.

Then in 2005 I had an epiphany. My road to Damascus moment. I discovered dance. I didn’t 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 ‘able-bodied’. Superfit people. People who could move really quickly, and jump and had straight pointy legs and straight pointy arms…clean lines. That’s not my body.

But what I began to see, was that the way my body had developed and evolved – 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 – it understood – 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 – they actually couldn’t do what I could do.

I began to accept that my use of crutches was offering me opportunity – 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 ‘wrong’ 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 wasn’t that interested in choreographing for them -‘You all kinda look the same to me…”, I told them. These young dancers were horrified… “but you cant say that! That’s discrimination!”

Yes. Yes it is discrimination. Of course I don’t truly mean it, but I am not choosing that quite controversial –and 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 ideal…

Now I’m not saying being disabled is a wonderful or easy thing. I don’t 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 it….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 doesn’t 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 stick…? 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 -I’m a human being. I’m Scottish. I’m short. I’m white. I’m an artist. I’m a European. I’m an aunt. I’m single. I’m a homeowner. I’m a daughter. I’m a thirty-something. I’m a sister…. I’m a woman….

And I’m 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 who’s not disabled, I’m sure you’re great, I really wouldn’t want to be you….

I’m doing fine now….

 

Frances Ryan wrote a great article – “It’s not only steps that keep us out”: 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 doesn’t 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.

Its true that mainstream feminism do not often consider disabled women but we knew that – Jenny Morris has been writing and speaking about Feminism, Gender and Disability since the 1990’s.

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.

So  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 – from feminist communities, LGBT, faith communities because they insist on congregating in non accessible venues. And the segregation is also from the disabled people’s 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  own good). And who knows how to support them when they are raped? A report by Professor Betsy Stanko, stated that the ‘rape of vulnerable women, especially those with learning difficulties, has effectively been “decriminalised”.

I guess I am speaking about the need for intersectionality also when we talk about disability – that we have more than one identity and we ought to acknowledge that – 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 – 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,  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’

Read the report at the  UN Human Rights website (http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=14514&LangID=E)

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 women’s 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 – 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 (MARAC’s) 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 State’s 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. 

Kirsty will be coming back back to the UK summer 2015 – we look forward to hearing more from her.

Illustration: Erin McPhee

In the dis/ableist cultures in which we live, disabled people’s(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 can’t understand – a “hypersexuality” that they can’t control; and sexual desires that are somehow ‘deviant’ 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 women’s 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, it’s important that my voice isn’t the only one (re)telling people’s stories, but because it offers the opportunity to identify, or relate to, the stories and words of others – regardless of disability status. Far from being “degendered” 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 ‘woman’ and ‘women’ in this article with a broad, inclusive and diverse understanding of “womanhood”; 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 women’s 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 women’s collective sexual story was distinctly molded by heteronormativity, heterosexuality, and patriarchy. While heterosexuality is a sexual orientation, heteronormativity is the idea that heterosexuality – as a sexual preference, lifestyle, and societal institution – 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 wasn’t uncommon for whole chapters of women’s 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 “properly” or “appropriately” enough, for both themselves and their partners.

Sally(4): “Who would want to have sex with me when there are plenty of normal girls more than willing?”

Lucille: “I felt so bad about not wanting sex [after injury] that I kept telling him to have an affair”.

Jenny: [After a date] “His father came out to my car and told me to fuck off. He [boyfriend] didn’t have any disability… He said “fuck off you cripple and leave my son alone””.

This lack of confidence was further emphasised through women’s 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 – norms which dictate a fully-functioning, autonomous, mobile, “sexy”, strong and supple body for physical, penetrative, goal-orientated and genitally-focused activity – 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 men’s 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 didn’t 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: “Although I knew that he adored me, I also always felt slightly as though I didn’t deserve him. I am a logical person, and I know that disability puts you further down the relationship league table.”

Jane: “I am unhappy [in the relationship] a lot. But I’m scared no one else would accept me. I just think people don’t accept people who are different.”

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 (“able-bodied”) women (Canadian Women’s 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 : “He wanted (and got) sex at least twice a day every day. Sometimes we had sex more than twice a day – even up to five times a day. It didn’t 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.”

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 – for example, in films and on television – we are usually depicted as sexless, burdensome and pitiful. Interestingly, disabled people’s own (rights) movements have historically echoed this silence; it is only relatively recently that sex and sexuality – disabled people’s sexual politics – have been loudly and proudly placed on disability rights and justice agendas.

Gemma: “And, he [doctor] was just totally embarrassed. I thought ‘how bizarre’, he just didn’t want to tackle it at all. He was totally…aghast…didn’t comment and carried on [laughs]… I think having a couple of lesbians discussing their orgasms was not what he had in mind […] I just think that’s quite telling, really.”

Helen: “When I was younger I remember this one guy at school said “Can you have sex?” I was like “Yeah!”… Getting people to see past the chair… it’s difficult.”

Cripping Sex: What is a sexy body? While many seldom recognised it – or had the resources to claim it – 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, “non-normative”, or different can truly challenge society’s prescriptive ideas of what constitutes a sexy body. These unique bodies can also radically crip(6) – or disrupt – 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 – 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 (“able”) bodies, the scope for transformation may be limited.

Rhona: “Sex 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 ‘time-out’, and I feel liberated. Done right, it is all pleasure and no pain.”

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 “sex” 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 stroking… and shows how disabled bodies can expand and envelope pleasure in new, exciting ways.

Hannah: “So that was an eye opener, that wow, an orgasm through touching above the injury… it’s amazing really…”

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 didn’t fit their embodiment (their experiences of their bodies). One couple decentered the orgasm because, they said, relentlessly ‘chasing’ 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: “I can’t feel any sensation that one would normally have but the way I feel does change in a way I can’t describe. Teamed with my imagination it can be very pleasant, makes me feel sexy.”

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 ‘cos, 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 ‘Cosmo conspiracy of great sex’. This is the (false) idea that all people are having incredible sex, all of the time – which just isn’t true. The sexual stories collected in my research showed that enjoyable sex isn’t natural, but takes work: open discussion with partners; understanding a partner’s 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 – and all women and girls – to reclaim ‘sexy’ from the deeply oppressive ways in which it is proliferated and maintained in our cultures: a mode of sexuality that is considered “natural” but is, in reality, anything but, being routinely learned and relearned; taught, policed, and regulated throughout our lives.

Conclusions… 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 – as women – 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 – if voiced and heard – 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, what’s 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 kirsty.liddiard@ryerson.ca.

1. This article uses the terms ‘disabled people’ and ‘disabled person’ rather than ‘people first’ terminology (‘people with disabilities’ or ‘person with a disability’). This reflects the position that disability, while part of identity, is not intrinsically embodied within the person, and is not individual or medical. Instead, disability is the sum of systemic, attitudinal, environmental, political, economic and cultural barriers within society.
2. The asexual identity ascribed to disabled people is situated outside of the proud asexual identity chosen by the asexual community.
3. LGBTQQI2-S: Lesbian, Gay, Bisexual, Transgender, Questioning, Queer, Intersex and 2-Spirit (LGBTQQI2-S) communities.
4. All names have been changed.
5. The term “dis/ableism” refers to the dual processes of disablism and ableism. Disablism is a form of direct discrimination or prejudice on the grounds of disability; ableism is a broader network of cultural beliefs whereby the non-disabled/”able” body and mind are the norm against which the value of all other bodies and minds are determined.
6. The term crip has been reclaimed by many disabled people from the derogatory term “cripple”. Through Crip theory and Crip politics, the meaning of crip has become synonymous with resistance, pride, and non-normativity as a means of strength. I use crip as a verb, to refer to the process by which disability can fundamentally undermine the oppressive ideology of the norm, as well as to expose how “able-bodiedness” is naturalized (considered natural) and established.

References

• Canadian Women’s Foundation (2011) The Facts About Violence Against Women. Online. [Accessed 09.11.2013]. Available online here.

• Shakespeare, T. (2000) ‘Disabled Sexuality: Toward Rights and Recognition’, Sexuality and Disability, 18: 3, 159-166