Storying Disabled Women’s Sexual and Intimacy

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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.

Storifying disabled women's sexual and intimate livesIllustration: 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

Meeting Rashida Manjoo, UN rapporteur on Violence against

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Eleanor Lisney with Rashida Manjoo

Eleanor Lisney with Rashida Manjoo

Sisters of Frida was invited by Eiman to join other Muslim women NGOs to attend  the consultative meeting and  meet with the UN Special Rapporteur on Violence against Women, Rashida Manjoo, at the Central Mosque in Leicester. We had prepared a pack and briefing paper with a short oral presentation.

There were about 20 different NGOs and we presented our concerns to her.

It was good to meet her and the other women, some of whom wanted to collaborate with us in the future!

Listen to Rashida Manjoo, UN Special Rapporteur speak on violence against women, its causes and consequences at the public part of the first Joint Committee on Human Rights this morning at the House of Commons. (http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15260)

A useful resource in connection would be the Rights of Women which have produced a number of information sheets on legal issues affecting women.

 

Opening the doors: Debt, domestic violence, power relations and an eviction notice

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elle:

“Sarah (not her real name) must have thought her life was on a more even keel when she finally worked up the courage to escape the violence in her family home. She had moved back in again in 2008 when she struggled to find a job after leaving university. It wasn’t a good time to be graduating. The economy had just tanked. She was also battling a serious mental health issue – borderline personality disorder (BPD). Once home, she says she found herself ‘scapegoated’ for not having a job and once again the target of a relative’s abuse and violence.

Now she faces the reality of being evicted (see letter below) from the shared house run by a housing trust in Greenwich – the borough she came to for help.”

Originally posted on London food bank:

Sarah, a single woman of 28 and a law graduate, came in on Friday and kindly shared her account of why she needed help. Before I pass on her story I’d like to remind readers that I don’t speak for those who run this London food bank, although they’ve allowed me to interview their clients. Any opinions expressed on this site from time to time are my own. I don’t represent the food banks in the borough of Greenwich. Neither do I represent the views of the Trussell Trust , which partners with churches in this area to run the food banks.

Sarah (not her real name) must have thought her life was on a more even keel when she finally worked up the courage to escape the violence in her family home. She had moved back in again in 2008 when she struggled to find a job after leaving…

View original 1,505 more words

Disabled women in discussion

Video


(subtitles to come later)

(from right) Rahel Gaffen, Michelle Daley, Zara Todd, Lucia Bellini, Kirsten Hearn, Eleanor Lisney and Ciara Doyle.

Filmed with thanks to Disability Action in Islington by Felix Gonzalez for the WOW party installation at the Southbank, London

Disabled and Proud Women

Video

speakers : Michelle Daley, Zara Todd, Lucia Bellini, Kirsten Hearn, Eleanor Lisney and Ciara Doyle.

Filmed with thanks to Disability Action in Islington by Felix Gonzalez for the WOW party installation at the Southbank, London

Transcript

Michelle Daley

Ok my names Michelle Daley and I’m a member of Sisters of Frida and I’ve been involved in the Disabled People’s movement since early 2000

I think it’s important for us to kind of think about why is it as disabled women we have to keep justifying our existence

Why do we have to justify who we are?

Why do we have to say make a statement about yes I’m attractive?

I can be err attracted to others

I’m a woman and I’m the same as any other woman

I also think it’s important that we recognise the people that came before us err who fought for women rights

But also there are many important disabled women who fought for our rights as well

and I think that’s what makes me proud of who I am as a disabled woman knowing that there was someone before me who started that journey

And I think it’s for me to continue that and to say yes I am proud to be a disabled black woman

Thank you!

Zara Todd

So I’m Zara, I’m 28 and a proud disabled young woman um yeah that’s me!

Is that all you’d like to say about today?

Err my brains a bit frazzled!

I think that it’s really interesting bringing together a group of disabled women

because yes we have a lot of shared experiences but we also have a lot of things

that are very unique to us

And I think often it’s easy to get caught up in labels

And while we need spaces to explore our identity we don’t necessarily need to come

to the same conclusions

And what I think today’s been quite good at

What I think the event will be quite good at is getting a space where we can

acknowledge who we are

All of who we are and just go yeah fine

Thanks!

Lucia Bellini

My name’s Lucia Bellini and I’m part of Sisters of Frida

I’m really happy to be able to say that I’m a disabled woman

That I’m very proud to be a disabled woman

I’m independent, I work, I am able to challenge stereotypes

Um and I’m able to fight for equality of opportunity in society for disabled people in

general

I’m um I think that there needs to be a lot more publicity or disabled women need to be portrayed in a much more positive light in the media

Um we were talking earlier about disabled women doing the catwalk but made to look non disabled

And I think we should be proud of our identities, we should be proud to look different if we choose to

Err if we want to conform and wear make-up and err and we should also be allowed to choose to do that too

Err err I’m a bit fed up of people telling me asking me why I want to wear make-up

Why I’m interested in how I look if I’m blind

Err I also think that it’s time disabled women are seen as women and not different err

you know we heard about the fact that err women don’t understand that we want to go out on dates just like everybody else

That we can also have children if we choose to

That we can be in a relationship if we choose to

That we’re no different because we’re disabled

That we just have the extra challenges that we have to overcome

You have to overcome extra discrimination, discrimination because we’re female and

discrimination because we’re disabled as well as all the additional barriers we have and in physical access

So I think that um more that it would be really good if more women, disabled women, would be proud of being who they are

Of coming out as a disabled woman and um being angry enough to challenge the discrimination that they receive in our society

Kirsten Hearn

My name’s Kirsten

Um I wrote a song about the plight of disabled women and I’d like to share the lyrics

with you

“Think of a mag, yes any old mag

What’s on the cover?

What do you see?

Pretty young women posing and grinning

Slender and sexy but nothing like me

Indoctrination, objectification

Is this the way it’s supposed to be?

No one with blubber gets on the cover

No one who hasn’t got symmetry

SAS Sisters against Symmetry

SAS Sisters against Body Bigotry

They say that prosthetics don’t make good aesthetics

Our surgical corset should never be seen

With bits of us missing there’s no good us wishing

To grace the front cover of Vogue magazine

Indoctrination, objectification this is the way it has always been

You’ve got to be bold break out of the mould

We shape our image let’s learn to be mean

SAS Sisters against Symmetry

SAS Sisters against Body Bigotry

Cherish those humps, those nodules and bumps

Those wrinkles and bulges and bubbly bits

Nurture your spots, your baggy old bots, your stretch marks and scars and saggy old

Indoctrination, objectification

Symmetricality is the pits

Take it or leave it we don’t care one bit

Our bodies are ours including our clits!

SAS Sisters against Body Bigotry

SAS Sisters against Symmetry”

Ok right that’s better!

Um the key thing that I need to say about being a disabled woman and my

experience in the world is it’s a joyous thing

It’s an absolutely joyous thing to be a disabled woman

I am different in many ways

I have different ways of appreciating the world

And I’m not being Polyandrous about it

It actually is true that we live in a world that assumes that everybody is non-disabled

That everybody can hear, see, speak, walk, talk all the whole lot

And our world is designed in such a way just to allow those to be members of that

privileged club

And I feel really strongly that if we want a diverse community we have to embrace

and celebrate, support and glorify all those people who are different in that kind of

way

And so I do a lot of writing, a lot of speaking about the difference that is me as a disabled woman

And by celebrating those things that other people might find ugly or frightening and at the end of the day that’s where I want us to be as disabled women

But I don’t want us to lose the feeling of anger

We can embrace our pride

We can embrace our anger

And send it outwards to make changes in the world and at the end of the day

I believe that sanity comes to us in terms of being able to cope with the world if we

can also hope that what we do makes a difference

And I really hope that what we’re doing today is making that difference

Eleanor Lisney

I’m Eleanor Lisney

I’m a disabled woman and I’m proud of it

It took me a long time err to come out as a disabled woman even though I’ve had my impairment for a long time

I think for most of my youth I was in denial err about it and I wanted to be a normal person just like everybody else

However I am very happy to be with other women who

I find joy in having found other disabled women

Err it’s a sort of relief and a joy and um celebration to be able to talk with other

women about things that I’ve thought of for a long time and have been quiet about

And now it’s no longer time, it’s no longer time to be quiet

It’s time to um have a voice

Ciara Doyle

I’m Ciara, I am an academic and err a mother, a career woman and a disabled woman

Err I think today was really really powerful and important

Err the err the reason sorry I’m completely frazzled!

Ok err I think that today was extremely important err

I think that it doesn’t happen nearly enough

And needs to happen much more

That the feminist agenda comes to disability politics

And that disability politics is brought to the feminist agenda

Because I really think they need to work far more closely together

And I think that there are areas within feminism or disability where disabled women need to be in the lead

I think that we as women in particular in this society

We are judged very very much within our bodies and how our bodies function

Err within quite strictly set gender norms

And I think that disabled women in particular are living on the knife edge of this

because it’s not just men the Patriarchal system in general

But the Patriarchal system through the medical profession as its Police Force

That chooses to pathologies or identify when women’s bodies, emotions or minds

are working within what are perceived to be acceptable levels of normality

Or outside of those acceptable levels of normality which are then pathologised

Which then creates disability because women are told that they are abnormal

And must either accept a victimhood status

Or work hard to normalise themselves

Instead of being able to celebrate who we are and what we are

And so this why I believe these are very much gender issues as well as being very very much disabled issues

And it is of no surprise that the majority of people who develop disabilities are women

Err and that it is two issues that need to come together and spend far more time and

dialogue with each other

Which is exactly what we were doing today

Making a start on that

Thank you!

Nancy Maguire: Perspective from pioneer to advocate for inclusion

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Nancy Maguire was one of the speakers at the WOW party. She agreed to share her journey here with us.

Nancy

Nancy Maquire

I was born in London in 1986 and have a condition called osteogenesis  imperfecta, commonly  known as brittle  bones. Many children with brittle bones grow up protected – overprotected, some might say – from any possibility of hurting themselves. My parents wanted me to be safe, but they also wanted me to have the opportunity to play, make friends and lead as normal a childhood as possible.

In the 1980s, inclusive education was still a fairly new concept. Like most parents of a disabled child, mine were advised to send me to a special school. My mother is a teacher, and after visiting the recommended school she was convinced that it would provide a substandard education.  My parents have always used my older sister Katy, who did not have a disability, to gauge what is acceptable for me: If they thought something wasn’t good enough for Katy, then it wasn’t good enough for me.

I was the first child with a disability to attend my primary school, and in many ways I felt like a guinea pig for inclusion. For example, despite having a positive attitude towards including me in all aspects of school life, my teachers lacked experience in how to adapt physical education so that I could get involved in a meaningful way.

Like most childhoods, mine wasn’t always easy. I spent a lot of time in hospital, and even within an ‘inclusive’ mainstream education system, there were times when I was excluded. For example, I wasn’t allowed to go to my nursery Christmas party because the teachers were worried I would break a bone.

Also, at high school they had a separate table in the canteen for children with disabilities and the teachers could not understand why I refused to sit at it. Despite setbacks and obstacles, however, I managed to flourish both educationally and socially.

I was always encouraged to try new things. My extracurricular activities included swimming, ballet, wheelchair tennis, drama and singing.  In many of these, I was also the only child with a disability. Interestingly, I often found these groups more inclusive than school in terms of how much I could participate and contribute. I felt wanted and people found creative ways for me to get involved. Nonetheless, there were many things I found difficult to do because of my limited mobility. I would sometimes feel upset because I couldn’t do things as well as the other children, and as I grew older and more self-conscious, I became reluctant to put myself in situations where my difficulties were on show.

In my teenage years a lot of my friends went through phases of being a ‘goth’ or a ‘rude girl’, which involved dressing or behaving in ways designed to attract attention. Whilst they were doing everything they could to stand out and be different, I was desperate to be ‘normal’ and fit in. Growing up with a disability, I received a lot of attention. People in the street would often stare at me, make comments and ask my parents, “What’s wrong with her?” I had days when I was able to brush it off, but no amount of resilience or family support can stop that from affecting you.

I developed extremely low self- esteem and poor body image, made worse because I was significantly overweight. I found exercise difficult, and like many girls my age, I ate to comfort myself. I had also internalized the medical terminology that was used to describe me – in particular the word ‘deformed’ (I had a curvature of the spine, since corrected). When I was 14, I developed  an eating disorder, partly  because I wanted to lose weight  – but also because my weight  felt like one aspect of my physical appearance that I could actually  control.

Although I had incredibly supportive family and friends, being disabled were never something I viewed as a positive thing. I thought I had to overcome it, like adversity.  I became obsessed with being as ‘undisabled’ as possible, and I was convinced that if I could walk, my life would be a lot better. Ironically, although I no longer use a wheelchair, in many ways I feel more aware of my disability than ever. People still make comments about me because I have small stature, and make assumptions about my life and ability; I always have to prove myself, particularly in the workplace. Though I am not defined by my disability, it has been pivotal in shaping who I am and what I have achieved. Having a disability is now something I embrace: I no longer see it as a negative thing or something I should be embarrassed about. In many ways being disabled has worked to my advantage and created opportunities that might never have been available to me – like writing this article.

Every child’s experience is different. I come from a lower- middle-class family in the United Kingdom, where I had access to free health care and a good education.  But I strongly believe that the issues of belonging, self-esteem and aspiration transcend such distinctions as gender, class and nationality. To develop a greater sense of self-worth, children with disabilities need the opportunity to participate and contribute in all aspects of their lives.

People with disabilities are becoming more visible in many walks of life – in politics and the media, for example. This is instrumental in improving children’s perceptions of what they can achieve. When I was growing up, the only role model I had was Stevie Wonder. I admired him because he was a successful and respected musician despite being blind. However, it would have helped me to see people with disabilities doing everyday jobs – as teachers, doctors or shopkeepers. I think that would also have helped my parents. My mum said that when I was a child, she tried not to think about my future because it made her scared. She knew that I was capable but feared that my options would be limited.

As it turns out, my disability has not prevented me from achieving any of the important things. I am a qualified social worker, passed my driving test when I was 16, left home when I was 19 and have lived and worked in Asia and Africa. In the future I hope to be an advocate for children with disabilities on an international level, as I passionately believe in the inalienable human rights and untapped potential of these children.

First published at UNICEF

No to allowing sterilization of disabled minors in Columbia

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Sisters of Frida has signed in support.

Press Release

Organizations in several countries reject decision of the Colombian Constitutional Court allowing for sterilization of minors with disabilities without their consent.
Bogota, Colombia, March 18, 2014.

On March 11th, the Colombian Constitutional Court validated the practice of surgical sterilization of minors with intellectual and psychosocial disabilities after considering a constitutional challenge to article 7 of Law 1412 of 2010, which prohibited the practice of surgical sterilization for contraceptive purposes on minors in all cases. (Decision C-133/14 – Press Release No. 08)

Although the Constitutional Court declared article 7 constitutional, it stated that “when it comes to minors with disabilities for whom there is a proven impossibility to give consent in the future to undergo sterilization procedures, the parents, or in any case, the legal guardian, must request judicial authorization to allow surgical sterilization. In that sense, previous case law has considered that a person that does not have the capacity to understand what sterilization is or its consequences, as it is the case of mental disabilities, she or he will hardly be in a place to understand the responsibility attached to the exercise of maternity or paternity and therefore, the implications of being able to or not to procreate”. The Court added: “The decision to undergo surgical sterilization ensures more dignified living conditions for those who cannot make decisions related to the exercise of their reproductive freedom and that may be exposed to forced pregnancies in detriment of their dignity and personal integrity.” Justices Luis Guillermo Guerrero and Luis Ernesto Vargas will draft concurring opinions because they consider that such interpretation goes against applicable international human rights standards.

Various national and international organizations firmly rejected the statements of the Constitutional Court. “Sterilization does not protect anybody from sexual violence and in fact it is a risk factor. With this decision the Court disregarded its obligations under the Convention on the Rights of People with Disabilities, ratified by Colombia. The Convention requires that States recognize people with disabilities’ full legal capacity to make their own decisions and that they provide the necessary supports to do so”, said Andrea Parra, Director of the Action Program for Equality and Social Inclusion (PAIIS) of the Universidad de los Andes in Colombia. “The Convention specifically protects people with disabilities’ right to maintain their fertility, which historically has been controlled and denied.The Convention recognizes that all the people, regardless of their disability, have will and preferences and the State must recognize and respect them. Validating a third party signature of the consent form to the procedure is forced sterilization”, Parra added.

Organizations from Australia, Argentina, Canada, the United States, India, Mexico, Peru and the United Kingdom, as well as international organizations rejected the decision. According to the report

“Sterilization of Women and Girls with Disabilities” by the Campaign to Stop Torture in Health Care, “Systemic prejudice and discrimination against women and girls with
disabilities continues to result in widespread denial of their right to experience their sexuality, to have sexual relationships, and to found and maintain families. Forced sterilization is an act of violence, a form of social control, and a violation of the right to be free from torture and other cruel, inhuman, or degrading treatment or punishment.”

The International Federation of Gynechology and Obstretics (FIGO) in its guidelines on female sterilization states that

“Only women themselves can give ethically valid consent to their own sterilization. Family members including husbands, parents, legal guardians, medical practitioners and, for instance, government or other public officers, cannot consent on any woman’s or girl’s behalf.”

Doctor Claudia Malacrida, sociologist and professor at the University of Lethbridge in Canada, expert in eugenic practices said:

“Involuntary sterilization is not the solution for disabled people’s sexuality. Rather, education, support and opportunities to engage and learn, facilitate disabled people’s emotional, sexual and reproductive lives. Involuntary sterilization can also often have the effect of hiding the outcomes of sexual abuse; it is NOT a way of protecting disabled people from abuse or unwanted sexual contact, but in fact can make them more vulnerable”.

Stephanie Ortoleva, from international NGO Women Enabled, Inc. states:

“Forced non-consensual sterilization of women and girls with disabilities cannot be tolerated as it not only violates our core human rights, but also our physical and mental health. Empowering others to make such decisions for women and girls with disabilities is an unacceptable form of violence and control”.

Erich Kofmel from Autistic Minority International added:

“What is particularly troubling to us is the uncertain scope of the court’s decision. Many persons with so-called mental disabilities, for example those on the autism spectrum, may be falsely thought of as incapable of exercising their sexual and reproductive rights, now or in the future, and unjustly judged due to a lack of knowledge about their condition.”

The decision not only disregards the UN Disability Convention, it also ignores the recommendations made to Colombia by the Committee to Eliminate all Forms of Discrimination Against Women (CEDAW), which specifically told Colombia to amend its regulatory framework to guarantee that sterilization is conducted with the free and informed consent of women with disabilities.

This and other aspects related to violations of sexual and reproductive rights of people with disabilities in Colombia will be presented to the Inter-American Commission on Human rights during the upcoming thematic hearing on the issue, which will take place on March 24th in Washington, D.C., United States.

Colombia has the international obligation to adjust its laws, judicial decisions, policies and practices to the mandates of the UN Convention on Disability and to guarantee the autonomy and legal capacity of all people with disabilities as recognized by Law 1618 of 2013.

Signatory Organizations:

Colombia:

Action Program for Equality and Social Inclusion (PAIIS), Universidad de los Andes
Asociación Colombiana de Síndrome de Down (ASDOWN)
Liga Colombiana de Autismo (LICA)
Fundamental Colombia
Corporación Transición es Crecer

Other countries:

ARROW – Asian Pacific Resource and Research Center for Women (Regional)
Autistic Minority International (International)
Burton Blatt Institute, Syracuse University (United States)
Canadian Association of the Deaf (Canada)
Eugenics and Newgenics Research Project, Universidad de Lethbridge (Canada)
Center for Reproductive Rights (International)
Centro Estratégico de Impacto Social – CEIS (Mexico)
Centro de Estudios Legales y Sociales – CELS (Argentina)
Clínica Jurídica de Acciones de Interés Público, sección Discapacidad de la Pontificia
Universidad Católica del Peru. (Peru)
Clínica Jurídica del Programa Universitario de Derechos Humanos de la UNAM (Mexico)
Disability Rights International –DRI (International)
Documenta, análisis y acción para la justicia social a.c. (Mexico)
Impact Litigation Project, American University (United States)
International Disability Alliance (International)
International Network of Women with Disabilities (International)
Open Society Foundations (International)
Proyecto de Litigio de Alto Impacto, American University (Estados Unidos)
Respectful Interfaces (Estados Unidos)
School of Health, Policy and Management, Critical Disability Studies, York University (Canada)
Sisters of Frida (United Kingdom)
Sociedad y Discapacidad (Peru)
Women Enabled, Inc. (International)
Women’s Link Worldwide (International)
Women with Disabilities Australia (Australia)
Women with Disabilities India Network (India)

For more information contact:
Andrea Parra
Programa de Acción por la Igualdad y la Inclusión Social (PAIIS) Universidad de los Andes.

Ph: +5713394949 ext 3157 – +573136726231

paiis@uniandes.edu.co

Sources:

Constitutional Court of Colombia – Press Release No. 08 – March 11, 2014: http://goo.gl/pTKohf

UN Convention on the Rights of People with Disabilities: http://goo.gl/P72C2s

Recommendations to Colombia by the CEDAW Committee, October 2013, par. 30(e): http://goo.gl/94Yjpz

International Federation on Gynechology and Obstetrics. Guidelines on Female Sterilization, 2011: http://goo.gl/Y8xTPn

Campain to Stop Torture in Health Care. Briefing Paper: http://goo.gl/0ZX0Bi

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Comunicado de Prensa esterilización Colombia VERSION FINAL 20140319(Spanish version Word doc)

Press Release Sterilization Colombia FINAL VERSION 20140319 (Word doc)
Press Release Sterilization Colombia FINAL VERSION 20140319-2 (pdf version)