Category Archives: disabled feminism

Zara Todd: Disability rights campaigner in today’s Guardian!

Zara Todd: Disability rights campaigner in today’s Guardian!

Zara, one of our steering group and director, had an article My biggest act of rebellion as a disabled person is living as I wish’. But somehow that fact of being in Sisters of Frida got missed out in her impressive CV!

“What you fundamentally want when you are growing up is to fit in, and when you are constantly being told that you don’t fit, there are two ways you can react,” says Todd. “One is to take it all on board and end up hating yourself, and the other one is to fight it.”

For Todd, who has been a committed activist since the age of 11 when she began “all sorts of campaigning” with a local charity focused on young people, it is quite clear which approach she took. While legal landmarks such as the Disability Discrimination Act 1995 (DDA) and the Equality Act 2010 have undoubtedly heralded improvements in the lives of younger disabled people, numerous obstacles remain to full inclusion, she says.

“There have been massive strides, but one of the things that saddens me most about hearing children and young people’s experiences today is that a lot of the things that I experienced are still happening. I hear stories of young people who aren’t even allowed out [during break times] because there are fears that they might be bullied or that something might happen to them and there aren’t enough staff to facilitate it safely, so the only option is to keep them all in a room together.”

read the rest of the article at the Guardian.

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Zara Todd

Zara Todd @toddles23

 

 

Julia Daniels: On the Subject of Voice

Julia Daniels: On the Subject of Voice

Thank you to Julia Daniels for allowing us to reblog this.

For lots of other people, this ‘blog writing’ malarkey seems to come so easily… and writing as a way to express my emotions has become a very precious process…so why is it that the words; ‘developing an on-line presence’ seem to invoke such terror in me?

Maybe it’s because I’m a bit of an introvert, naturally seeking enjoyment out of quieter pastimes like reading, yoga and, to be honest, blissfully day-dreaming about anything and everything. And maybe (I think this is the crux of it) it is due to the tangled mess of emotions that prevent me from speaking – the fear that I will have nothing of value to contribute to the world. Fear, also, of being exposed as the worthless waste that I know myself to be, or that living in this ableist world has taught me that I am. Fear of exposing myself to public ridicule by using the last remaining method I know to express my thoughts to a select few of my fellow academics.

For I do use writing to express myself, but always under the cloak and relative protection of academia, twisting and cultivating glimpses of my private, personal life into theoretical and political concepts in order to fool people into thinking that I do indeed have the flair and proficiency to be a successful PhD researcher. I fear that by writing a blog like this, I will be caught out, recognised as an imposter. Nevertheless, I feel the time has come for me to ‘speak out’, as it were.

Maybe for you to understand where I’m coming from, I first need to tell you a little bit about my life. 15 years ago, I was involved in a car accident which left me with an assortment of broken bones to my upper body, a paralysed right arm, a severe head injury and damage to my vocal cords from incubation. 6 operations later, I still have a peculiar, breathy-sounding, very quiet voice. This compounds with the damage to the language and memory sections of my brain to make communication quite difficult for me. I have trouble processing auditory information, so it takes a while for me to fully comprehend what is being said in a conversation. Teamed with my natural tendency towards inhibition, this leads towards a potentially isolated existence. Whilst I do enjoy meeting new people, the dread of the, ‘what’s wrong with you, then?’ questions, or even worse, the grabbing of the throat and trying to mimic my voice makes me want to SCREAM (but, ironically, I can’t physically do that. Bugger). This makes me silently shrink away, back into the close circle of friends that I know and love.

It is taken for granted that the spoken voice is an accurate depiction of who you are as a person. If you are articulate, reasoned and comprehensible, this is taken as evidence that you are well-educated (whatever that means). This presupposition leaves no room for the disfluent speakers who stutter and stumble over their words, or for people like me who’s words push and shove together in a maddening array to get out, leaving me so confused that none end up getting expressed. Is it possible to imagine a world where disfluent speakers are equally validated? Where the non-disabled population appreciates and respects that the answer to those, ‘what happened to you, then?’ questions is something a disabled person might not actually want to go into on first meeting? We can hope, that’s for sure.

By increasing the voices – however they are expressed – of disabled people, we can hope to destabilise hegemonic practices and move together towards a better world. I hope to contribute towards this move with my research.  To be continued…

 Julia Daniels is a PhD researcher at the University of Sheffield. 15 years ago she was in a car accident which resulted in a head injury and paralysed right arm, but it was years before she got involved with critical disability studies. Now her research interests involve feminist approaches to disability, Voice Relational Methodology and the biopolitics of disability.

Karin Hitselberger writes Why We Need to Talk About Kylie Jenner

Karin Hitselberger writes Why We Need to Talk About Kylie Jenner

Many thanks to  Karin Hitselberger  for permission to reblog this – first posted on Karin’s own blog Claiming Crip.
Photo of Kylie Jenner on the cover of Interview .magazine siting in a gold wheelchair with her arms resting on the wheels, wearing black heels, and a black corset)

I never thought I would say this, but we need to talk about Kylie Jenner.

We need to talk about Kylie Jenner posing on the cover of Interview Magazine in a wheelchair. We need to realize that this is not a simple conversation. I cannot talk about Kylie Jenner posing in a wheelchair in a simple way, because this conversation is anything but simple. This is not just about whether it is okay for able-bodied people to use mobility aids and disability as edgy props to shock people. No, this is about so much more.

Kylie Jenner’s photo and the conversation around it made me uncomfortable as a disabled person, but not just because she was using a wheelchair as a prop. I was uncomfortable when I read Tweets that suggested that the wheelchair was used as a prop to symbolize the “limitations” Kylie Jenner experienced through being famous. That made my skin crawl. A wheelchair being symbolic of limitations, because the reality is that couldn’t be further from the truth. We need to talk about what a wheelchair really is.

For me, a full-time wheelchair user, my wheelchair does not represent limitations and restrictions; it represents freedom. Without my wheelchair I wouldn’t be able to leave my house, or even my bedroom. Without my wheelchair, I never would’ve been able to go to school or study abroad in England. Simply put, without my wheelchair, I would not have a life. My wheelchair is not restricting; it is the thing that allows me to have some determination about the way in which I move through the world. I am limited by inaccessible environments, ableism, discrimination, and inadequate access to things like personal care, accessible housing, employment, and accessible, adequate medical care. I am limited by a world that does not see disabled people as being fully equal to non-disabled people. We need to talk about the limitations and restrictions that exist in the world for disabled people, in this case, wheelchair users in particular, but we also need to realize that it Is society and social structures that cause these limitations, not the wheelchair in and of itself.

We need to talk about Kylie Jenner. We need to talk about privilege. We need to talk about the fact that for Kylie Jenner a wheelchair was nothing more than an edgy, sexy prop. We need to talk about why I cringe every time I see an able-bodied person use a wheelchair in this way. I promise you it’s not because I don’t think wheelchairs, and the people in them,can be beautiful and sexy, I know they can. Trust me when I say that I know that being in a wheelchair does not make you any less beautiful, sexy, or awesome than anybody else, but I also know that we live in a society that often times has a hard time seeing it. We need to talk about the fact that Kylie Jenner, a conventionally beautiful able-bodied woman who fits societal standards of beauty in almost every way is allowed to be sexy and edgy in a wheelchair, when that reality is so often denied to many wheelchair using women. We need to talk about the fact that disabled people, real disabled people, are still largely missing in media representation, especially media representation around beauty and sexuality.

We need to talk about the fact that Kylie Jenner is allowed to look edgy and sexy in a wheelchair but she has never had her ability to consent to sexual activity questioned because she was disabled. She has never had her sexuality interrogated by random strangers and put on display simply because she was sitting in a wheelchair. That wheelchair has never made her an item on a sexual bucket list that people want to try just to see what it would be like. Kylie Jenner has never heard the words, “You’re so pretty… For someone in a wheelchair.” She’s never experienced unwanted fetishization that seems to be so common for disabled women. She’s never had to balance feeling beautiful,  and sexual and being sexually attractive in a world that sees you as anything but that.

I’m not saying that Kylie Jenner has never experienced anything difficult in her life, but she is not experience what it is like to live and love as a disabled woman. Kylie Jenner has so many different privileges that I cannot list them all, and because of that she has a responsibility to realize that not all stories belong to her to use as edgy, provocative props. There is nothing wrong with realizing that wheelchairs can be beautiful, but one must also realize that they are not simple chairs.

Experiencing life in a wheelchair comes with a unique set of challenges that cannot be ignored. Being a wheelchair user means that you live in a world that is not set up for you. Being a wheelchair user means you experienced spaces on a daily basis where you are not meant to fit. Being a wheelchair user means learning to be proud of who you are in a world that tells you that you would be better off being almost anybody else. For most people, being a wheelchair user means learning to accept the scars or the spasms and the parts of your body that don’t work the way everyone else thinks they should. For me, being a wheelchair user means learning to see beauty, strength, and yes, even sexiness, where most people see brokenness. It means learning to define myself outside of societal standards of beauty, and being comfortable with who I am regardless of what everyone else thinks.

We need to talk about Kylie Jenner because this is not really about her. It is about how disability can be considered cool when used as a prop, but so often the lives of actually disabled people are seen as a terrible fate. It’s about the fact that so often disabled women are not given the opportunity to be seen as sexy and beautiful outside of the realm of fetishization. It’s about the fact that it is difficult to see a wheelchair as nothing more than a prop when it is so intertwined with the way that many people experience and move through the world.

I am not ashamed to be in a wheelchair. Being a wheelchair user is a complicated and beautiful experience filled with challenges, beauty, and a unique perspective on life. I know beyond a shadow of a doubt that wheelchair users can be beautiful, strong, sassy, and sexy just like anybody else, and I don’t need Kylie Jenner, or any other able-bodied person to show me that.

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Karin Karin Hitselberger is an American currently getting doing her Masters degree in disability studies from the University of Leeds in England. She firmly believe in disability rights, and that disability is not simply something that needs to be cured, but rather a valid life experience.

Feminists dye fountains red in anti-austerity protest

Feminists dye fountains red in anti-austerity protest
Feminists dye fountains red in anti-austerity protest

We joined Sisters Uncut for their Day of Mass Action Funeral March to protest the drastic, devastating cuts to domestic violence services. ‘We march in remembrance of all the services that have already been cut as a result of the government’s austerity measures, and all those we will lose if funding isn’t restored and ring-fenced.’

“Sisters Uncut held a funeral-themed protest in Soho Square at 12.00pm, to mourn domestic violence services that have had to close as a result of Osborne’s austerity measures. Members of the group wore funeral attire and black veils as they read out the names of all the women who have been killed as a result of domestic violence.

The protest was called in response to the government’s spending review, delivered this Wednesday. Further cuts to local council budgets were announced, which are set to prompt further closures of local domestic violence support services. In a statement released this week, the group describe Osborne’s “tampon tax” proposals as a “sticking plaster on a haemorrhage”.

After bringing traffic to a standstill on Charing Cross road, the march ended with a rally by the Trafalgar Square fountains, where hundreds of onlookers watched as the group shouted “They cut, we bleed” and listed their demands, including: no further cuts to domestic violence support services, and guaranteed funding for specialist support services that help black and minority ethnic (BME) women.

Since Osborne’s austerity measures in 2010, over 30 domestic violence support services have been forced to close. (1) The group are concerned that, as more services shut down, more women risk death at the hands of violent partners or ex-partners.

The event was attended by over 500 women, many of whom are domestic violence survivors and support workers. Their chants included “two women a week murdered” and “they cut, we bleed”. The march was timed in response to the government’s spending review on Wednesday 25th November, which coincided with the UN-sponsored International Day to End Violence Against Women.

Domestic violence support services are a lifeline for women fleeing domestic violence. Specialist services bear the brunt of these cuts, especially those that help black and minority ethnic (BME) women, LGBTQ+ people and disabled women.  Disabled women are twice as likely to experience domestic violence. “

We wrote a blog for them on disabled women and our experience of domestic violence. And decided that some of us would join them on the march at Soho Square – here are some of the photos.

 

 

 

More photos at the Sisters of Frida Flickr 

Austerity puts disabled women at greater risk of domestic violence

Austerity puts disabled women at greater risk of domestic violence

This is first posted on the  Sisters Uncut  blog.

Disabled women are 2-3 times more likely to experience domestic violence, but have greater barriers to accessing services. Often they are not believed or their experiences as disabled women are not understood. Perpetrators exploit disabled women by financially abusing them, isolating them from friends and family, withholding vital care or medication, and using​ their​ impairments ​to apply the form of ​​abuse

Austerity has robbed disabled women of independ​ent living​ in a number of ways. The closure of the independent living fund, the introduction of ESA and the inappropriate work capability assessment, the change to PIP and​ Motability (for adapted vehicles) as there is an arbitrary change to mobility eligibility.

This is a systematic erosion of disabled people’s rights. An erosion so grave the UN is investigating.

Women are told they ​have to use nappies inspite of not being incontinent. Never mind the indignity. Never mind the health risk from sores, a risk that is not needed. Children are removed from disabled mothers as social services deem them not to be capable of parenthood. Disabled ​w​omen wait in fear of the arbitrary sanctions from job centre and DWP letters informing them they no longer meet criteria for benefits.

This all feeds into vulnerability, isolation and dependency on​ possibly​ abusive partners.

The decimation of disabled people’s rights and independence, through the systematic removal of social security has had one particularly significant effect: disabled women are left at greater risk of domestic violence.

When it comes to state support for disabled women, social security is no ‘benefit’. In a world which denies disabled people access to education, employment, family life and public spaces this money is a small recognition of the barriers faced.

Disabled women experience a compound oppression. As at the same time their risk of violence increases, funding to domestic violence​ aid​ services is falling. This is despite an evidence need for MORE funding to ensure they are accessible and responsive to all disabled women . We need more specialist services and accessible helplines and information.

Without this ​support​ and funding, disabled women lose their​ ​independentt living​, their social circles, ​civil rights, choice and control. Isolation, dependence and vulnerability are ​exacerbated​ by austerity.

Austerity sets up the conditions where disabled women are ​more than ​2-3 time​s likely to experience domestic violence.

 

 

Destroy the Joint, sure, but feminism must include disability politics

Destroy the Joint, sure, but feminism must include disability politics

This is reposted from The Conversation which uses a Creative Commons Attribution NoDerivatives licence and with kind permission from Kate Ellis. We think this fits in very well with what was voiced at the panel on disabled women at Feminism in London.

The sometimes uneasy relationship between feminist groups and disability activists was highlighted last weekend, when online Australian feminist group Destroy the Joint (DTJ) blocked and banned a number of high-profile Australian disability activists, claiming the women were in breach of their rules.

DTJ had called for submissions to the hashtag #beingawoman on its Facebook page, sparked by a Buzzfeed article featuring both lighthearted and serious tweets reflecting on modern womanhood.

Several disability activists began posting their experiences, only to be deleted for being “repetitive, circular and off topic”.

The comments that were deleted included the following:

My doctor told me to get a hysterectomy or change my tampon in my office because there was no accessible toilet nearby at my workplace #beingawoman

when people deny my sexuality because they think disabled people having sex is disgusting #beingawoman

DTJ banned the commenters from its Facebook page, for “spamming this post and page with a large number of obvious half truths and distortions”.

After a number of members and disability activists encouraged the group to reconsider its stance on intersectional feminism, DTJ issued an apology yesterday afternoon:

Dear Destroyers,

Let us begin with a belated and unreserved apology about the way we have handled the comment moderation in this instance [the #beingawoman incident]. We acknowledge we can always be more inclusive.

We are constantly discussing ways we can achieve this and no woman living with disability should be excluded from this page. Anyone who has been banned as a result of this will be unbanned. Please email jointdestroyer@gmail.com so we can be thorough about this.

It has always been our mission to include everyone and Counting Dead Women includes all women who have been killed as a result of gendered violence.

While it was a disappointing weekend for those of us who identify as both disabled and feminist, the gaffe has prompted a reflection on the ways disability politics are essential to feminist politics.

Intersectional feminism

Disability is a feminist issue and the silencing of disabled voices and experiences does not further the feminist cause. While the women posting on DTJ may have experienced gendered oppression, such as domestic violence, they are simultaneously affected by ableism.

American law professor Kimberlé Crenshaw described the ways minority groups experience multiple and overlapping oppression as intersectionality in 1989.

Women with Disabilities Australia recognises that, for women with disabilities, the effects of gendered oppression are compounded. As Sue Salthouse and Carolyn Frohmader explained in a 2004 presentation for the group:

Low levels of education relegate women with disabilities to lower echelons of society, limit their access to information and their ability to interpret it, limit their life choices and limit their ability to achieve financial and living independence.

Women with disabilities are also more likely to suffer domestic violence and sexual assault.

Feminist blogger and activist Clementine Ford told me via Facebook that this is the reason why disability politics must be included in feminism:

It is vital for feminism to focus on the impact of sexual violence, but how can we do that properly if we don’t acknowledge that 90% of women with an intellectual disability have experienced sexual assault?

Reproductive rights are core to feminism, yet they cannot be discussed without also hearing from the women whose impairments have led to doctors and carers deciding – without their permission – they must be sterilised in order to prevent the physical aftermath of sexual violence becoming a “problem”.

Just today, I read an article about two parents with cerebral palsy who have been “allowed” to keep their child. The dehumanisation of women with disabilities is appalling, but even worse is the way these issues are marginalised even within feminism.

Disability politics marginalised within feminism

In Integrating Disability, Transforming Feminist Theory (2002), Rosemarie Garland Thomson explains how both women and people with disabilities are considered “deviant and inferior” within cultural discourse and subsequently excluded from participation in public and economic life.

Other disability theorists suggest the reason women with disabilities have been excluded from mainstream feminist circles is because they are a reminder of vulnerability and lack of control, identities feminists have traditionally sought to reject.

Whereas disability was once thought of as an individual’s medical problem to overcome, following the work of disability activists such as the late Stella Young we are increasingly coming to recognise disability as a problem related to inaccessibility and negative attitudes. Disability, like gender, is a social construct.

We are all women

Back in 1988, disability theorist Susan Wendell called for a “feminist theory of disability” as a way to move forward in both disability politics and feminist theory. Wendell argued the oppression of disabled people is closely linked to the cultural oppression of the body. She believed a feminist theory of disability would “[liberate] both disabled and able-bodied people”.

Disability activist Samantha Connor, who was the first to be banned on DTJ for contravening its commenting guidelines, continues to see the importance of mainstream feminism in breaking down power imbalances for people with disabilities. As Connor explained to me:

We are all women, and the issues we face are issues faced by mainstream feminism, not by individuals or minority collectives.

The incident illustrates an important truth: being aware of intersectional oppression in 2015 should not be an optional “extra”, but fundamental to any social justice movement.

Correction: a previous version of this article contained a paragraph stating that criticism had also been also been levelled at DTJ over allegedly failing to include women with disabilities in their regular count of women who have died as a result of domestic violence or abuse. While that criticism exists, it is not substantiated.

Kate Ellis

Kate Ellis

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’

Disabled women at Feminism in London 2015

Disabled women at Feminism in London 2015

We were asked to organise a disabled women’s panel at this year’s Feminism in London Conference in October.

A big thank you to Lisa-Marie Taylor, FIL’s organiser, for inviting us!

We did some publicity by having a stall and we ‘re grateful to Annabel, Zara, Jacqueline and Sophie for helping us with the stall!

(Click on photos to get a bigger photo)

Real Media came to do do a short video feature on it – many thanks!

transcript FIL SOF panel (Word doc)

Frances Ryan also wrote a piece for the Guardian on the event A Disabled Woman’s struggle is any woman’s struggle

Obi was kind enough to video the whole event – if you wish to follow it in its entirety

http://bambuser.com/v/5877942

great additions from Nidhi Goyal and Asha Hans Part 1

http://bambuser.com/v/5878073

with Q&A from audience

Individual videos

Asha Hans video

TRANSCRIPT Asha Hans (Word doc)

Nidhi Goyal’s video

TRANSCRIPT Nidhi Goyal (Word doc)

Frances Ryan’s video

TRANSCRIPT Frances Ryan (Word doc)

Becky Olaniyi s video

TRANSCRIPT Becky Olaniyi  (Word doc)

Rebecca Bunce’s video

TRANSCRIPT Rebecca Bunce (Word doc)

Kirsten Hearn’s video

TRANSCRIPT Kirsten Hearn (Word doc)

Thank you all for having taken part in the event!

Disability is not our only identity: An interview with Becky Olaniyi

Disability is not our only identity: An interview with Becky Olaniyi
Becky Olaniyi

Becky Olaniyi

In anticipation of this year’s Feminism In London conference (October 24-25), Alicen Grey talks with Becky Olaniyi about disability, feminism, and the challenges and lessons of being an activist at the intersection of identities.

See the rest of the interview at the Feminist Curent.

Becky is the youngest member of our steering group but she’s a brilliant speaker. Its not too late to get tickets for the workshop. And if you have difficulties paying, just let them know.

Cynthia Kim: At the Intersection of Gender and Autism – Part I

Cynthia Kim: At the Intersection of Gender and Autism – Part I

thank you to Cynthia Kim for allowing us to repost this (posted originally on 19 Nov 2014) –

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

It wasn’t until after being diagnosed with Asperger’s last year that I learned about sensory sensitivities. Suddenly my aversion to dressy clothes, perfume and makeup made sense. A huge weight lifted. I’d spent decades wondering about my lack of femininity. Where other women seemed to revel in dressing up, I saw only itchy skin and painfully tight seams. Instead of making me feel glamorous, lipstick and eyeliner left me counting the minutes until I could wash my face.

Lacking the explanation that sensory sensitivities eventually provided, I spent decades feeling like I wasn’t a “real” woman.

Today I have four dresses hanging in my closet. Made of soft cottons and knits, they’re as comfortable as my worn hoodies and jeans. They’re not aspirational like my dresses of the past. I wear them when my husband takes me out on date nights. No makeup. No nylons. No tight pinching shoes. I’ve found a style that suits me, that makes me feel both beautiful and comfortable.

I’ve learned how to shop in a way that accommodates my sensory needs and I’ve learned that there is more than one way to be feminine.

*

There are many things I’ve had to learn or relearn over the past year. Mostly I’ve had to learn how to be autistic. That sounds like an odd thing to say. After all, I’ve been autistic all my life. But being autistic and knowing that I’m autistic are two vastly different things.

Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.

There are few role models for autistic women. There is no Rain Woman, no popular stereotype that comes to mind when you hear the phrase autistic woman. Perhaps that’s for the better. Stereotypes carry with them the burden of proving them wrong.

Still, we face hurdles when it comes to public perceptions of autistic adults. Again and again in my blog’s search terms I come across people searching for an answer to questions that surprise me.

Can aspie women marry? Can women with Asperger’s have children? Do aspies say ‘I love you”?

It seems we’re a mystery.

I hope that when people find my blog, they see that the answers to all of those things are yes. I’m married. I have a child. I tell my husband and daughter that I love them.

Sadly, that wasn’t always the case.

*

Women are expected to be intuitively skilled at social interaction. We are the nurturers, the carers. To be born without natural social instincts can leave you questioning your innate womanhood.

The first hint of what was to come arrived long before I’d given any thought to what being a woman would mean. At some point in sixth grade, many of the girls in my class became huggers. They hugged when they met each other and when they said goodbye. They hugged when they passed in the hallway. They hugged when they were happy or sad. They hugged and cried and squealed with excitement and I watched from a distance, perplexed. What did all this hugging mean? And more importantly, why wasn’t I suddenly feeling the need to hug someone every thirty seconds?

This was the first of many confusing conversations I was to have with myself.

I was a mother and wife for twenty-four years before I was diagnosed with Asperger’s. Over and over during that time, I questioned not only my womanhood, but my humanity. I questioned why I didn’t respond the way other women did to their children. I watched the other mothers tear up as the bus pulled away on the first day of kindergarten and felt guilty at my relief. Finally, a few hours alone, was all that was running through my head.

Looking back, I bet the other moms walked back to their newly quiet homes and felt a similar relief. The thing is, I never knew for sure because I didn’t talk with any of them. Beyond a friendly good morning at the bus stop, I was at a loss for how adult women socialized. I hovered around the fringes of social groups, watching as other moms made dates for coffee or shopping. They seemed so at ease, as if they’d all gotten the Mom Handbook while my copy had been lost in the mail.

I probably should have been envious but I was too busy being intimidated.

*

Unlike my difficulties with sensory sensitivities, Asperger’s provided an explanation but little solution when it came to socializing. I’ve had friends over the years, but not, it seems, in the way that other women do. Fortunately, I’ve made one friend who has been a constant in my adult life: my husband Sang.

Again and again as I was researching Asperger’s syndrome in adults, I came across bleak portraits of adult relationships. Broken marriages. Impossible-to-live-with autistic spouses.

Many of the challenges described in the literature were familiar. Our marriage certainly hasn’t been easy. But learning that I’m autistic has given us a new framework for understanding our relationship. Everything from why I find social outings exhausting to why I need to eat the same thing for breakfast every day suddenly had an explanation.

That understanding alone is a tremendous gift. People often question why someone my age would bother getting diagnosed. Especially someone who has a job, a family, a mostly settled path in life.

The explanation that comes with a diagnosis makes all the difference. For years, I knew something was wrong with me but I had no idea what. Most of the possibilities that I came up with made me feel bad about myself. Cold. Unfeeling. Immature. Selfish. Short-tempered.

Defective.

Getting a diagnosis swept all of those aside. Not only did I get an explanation for how I experience life, I got a user’s guide to my brain. It wasn’t an endpoint in my journey, but a starting place.

*

To be continued in Part 2 . . .

Cynthia’s book

http://ecx.images-amazon.com/images/I/51lW94xhLrL._SX329_BO1,204,203,200_.jpg

Kirsten Hearn writes: Sick of Exclusion

Kirsten Hearn writes: Sick of Exclusion

Kirsten Hearn will be at Feminism in London Sunday 25th 12 30 -2pm

Multiple identities: Ordinary Lives – the challenges of being disabled and feminist

Disabled women’s rights are human rights! Disability can be physical, mental, neurological; hidden or visible. This panel will look at activism through the prism of disability and feminism and seek to explore further the intersection and challenges of being between the two and the capacity of the two movements to work together for change.

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Kirsten Hearn

Kirsten Hearn

I’m sick and tired of having to challenge inaccessible practices within the Labour Party (an in the rest of life too). I’ve got better things to do than be tied up bashing down the doors, so I and others can participate. The discrimination spans all access issues, so all disabled people are targets.

Again, and again, and again, we give guidance on how to make docs accessible. “What part of the words “PDFs are inaccessible for people using text to speech assistive technology, so give us a word doc instead”, isn’t clear? It’s hardly any different in impact from “what part of the words, I haven’t got wings you know so how am I going to get into that riddled-with-steps venue you insist on having your meetings in?”; or “What did you say?” (when a sign language interpreter or an induction loop, isn’t present.
I’ve just opened an email from the Labour Party re the women’s conference tomorrow. Granted, it arrived yesterday evening, but I was chairing a scrutiny evidence session at that time and chose to go to bed afterwards, rather than download my emails. I chose also to do my day job today rather than read my home emails. As a consequence of this, I am only now dealing with yesterday’s backlog. Oh and I have checked, there’s nothing in today’s bunch which provides the accessible document.
Arguing for inclusion within the Labour Party is definitely one of those part time unpaid jobs that I am forced to do if I want to participate in the party. I could use that time instead building a stronger party and working to deliver a Labour Government headed by Jeremy Corbin, in 2020. I don’t care that because of the leadership election and the shadow appointments process, it’s been hard to confirm speakers etc. How difficult is it to produce a word version of a conference agenda, which was initially created in word, anyway? I mean …. !
Providing inaccessible documents is at the very least laziness, but it could hardly be argued that the Labour Party is ignorant, since they have been told. Yes, if poked,, they will deal with access requests, but we shouldn’t have to keep reminding them. It’s not like disabled people have only just been invented; or that we havn’t been campaigning for inclusion since the dawn of time. My question is, why are these mistakes still happening? I don’t know how disabled people can effectively influence party policy, raise the issues of concern to disabled people out there, in the party, if we can’t even get in the door, metaphorically or actually without kicking up a stink. So, not having enjoyed women’s conference last year in Manchester, I thought I wouldn’t go to the women’s conference this year; then when Jeremy was elected, I thought I would, in anticipation that the leader is going to address the women’s conference. Now, thanks to not getting accessible info about the women’s conference, I’ve decided I’m not going. So there will be one less stroppy disabled woman there tomorrow …. and I am sure that lack of clarity about access, belief that things won’t be accessible, feelings that disabled women are not important, are also reasons why less disabled women than perhaps who want to be there, will go to women’s conference tomorrow. And I’ve no doubt that other members of disability labour will have to spent time and energy battling away at conference, trying to fire-fight on access when we could be doing something much more important, like effecting policy, talking about why the austerity agenda, whether heavy or light is the greatest attack on disabled people in our living memory and why labour must not only defend disabled people’s rights but actively promote a disability rights based agenda. Not that I’m repeating myself, but I and others have been saying the above since exclusion first politicised us, in my case for 40 years. When will non-disabled people get it that they can remove disabling barriers if they want to.

Read the rest at Kirsten’s blog