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

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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

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Kirsten Hearn writes: Sick of Exclusion

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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

Against the legalisation of Assisted Suicide: a right to independent living before a right to suicide

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Sisters of Frida is a member of ROFA (Reclaiming Our Futures Alliance). In times of austerity, we see disabled and older women are likely to be coerced into assisted suicide from different pressures.

If the Assisted Dying Bill is passed, some Disabled and terminally ill people’s lives will be ended without their consent, through mistakes, subtle pressure and abuse.  No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome which can never be undone.

Read the story of Maud in the Guardian

If we structure society in such a way that many people have desperate, miserable lives, what sort of choice is it when people choose to kill themselves?
Maud lives round the corner from me in south London. She is 90 and on her own. She remembers a time when everyone knew everyone else, and when there was genuine community solidarity. Nowadays people come and go, she says, and young people can’t be bothered with the elderly. She is often lonely. “Even the doctor came round to see me and asked me if I wanted to commit suicide,” she says.

#notdeadyetuk

(photo of a NotDead Yet protest by Eleanor )

From Inclusion London

With two Assisted Dying bills currently before parliament, it is really important that Deaf and Disabled people and our organisations speak out loudly against the legalisation of assisted suicide and raise awareness of the threat this poses to disability equality.

Our message is that we want support to live not die. At a time when essential support is being taken away from us, when the challenges we face are exponentially growing as a direct result of adverse government policy, it is more dangerous than ever to introduce legislation which encourages suicide as a solution to the barriers Disabled people face.

We say: give Disabled people a right to independent living before a right to suicide.

Below are different ways that Disabled campaigners and our supporters can take action and get involved. We realise that not everyone has the time to do everything but anything you are able to contribute to the campaign would be valued.

1) Sign up the Reclaiming Our Futures statement. It’s quick and easy to do: just email your name to ellen.clifford@inclusionlondon.org.uk with ‘AS statement’ in the subject line. We are asking organisations, campaigns and individuals to sign up before the end of August. It’s really important we can show there is wide support for the case against legalisation.

Reclaiming Our Futures Alliance Statement

We are opposed to legalisation of assisted suicide. It will remove equality and choice from disabled people and further contribute to our oppression. If the Assisted Dying Bill is passed, some Disabled and terminally ill people’s lives will be ended without their consent, through mistakes, subtle pressure and abuse.  No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome which can never be undone.

[Reclaiming Our Futures or ROFA is a network of grassroots Disabled people led campaigns and organisations across England. For more information see: http://www.rofa.org.uk/%5D

2) Write to or arrange to meet your local MP (even over the Summer they will be receiving and responding to mail). You can download a template letter here.  Some MPs are organising public meetings to canvass the views of their constituents – check their websites to see if your MP is one of these. Please send us copies of any responses you receive.
3) Help publicise the facts about assisted suicide, for example send a letter to your local paper. Download the Assisted Suicide Open Template Letter for Media here.
4) If you have a personal story about this subject which informs your view on it and which you are willing to share please let us know. We are also looking for Disabled people who are happy to speak to the media about why we oppose legalisation of assisted suicide.
5) Join us at the Not Dead Yet UK/DPAC Protest on 11th September. Gather outside Parliament to show our opposition to Marris’ bill while it is being debated inside. Meet Old Palace Yard (opposite the House of Lord’s) from 9am. Further details to be confirmed.
6) Check if your MP is one of the named supporters of Marris’ bill? DPAC is encouraging campaign groups to organise protests outside the constituency offices of those MPs who have put their name to Marris’ Assisted Dying bill. If you would like support to organise a local protest or for more information contact Mail@dpac.uk.net(See http://www.publications.parliament.uk/pa/cm201516/cmhansrd/cm150624/debtext/150624-0001.htm#15062462000011 to check if your MP is named)

Here is a good Assisted Dying Bill Information_Easy Read version explaining the Assisted Dying Bill for everybody from ROFA (MS Word document)

empty wheelchairs and shoes with notes on them

photo from Not Dead Yet campaign

Feminism in London: Disabled Women’s panel, London 25th October

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flyerFeminism in London panel on 25th Oct sunday 12.30 Hilton Metropole London

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 for change.

speakers
Kirsten Hearn (Chair)
Becky Olaniyi (Sisters of Frida)
Rebecca Bunce (ICChange)
Asha Hans ( Shanta Memorial Rehabilitation Centre. &. Women with Disabilities India by video link)
Frances Ryan (Guardian journalist)
Nidhi Goyal (CREA: disability and sexuality by video link)

Tickets available now

The conference address: Hilton Metropole conference suite at the Hilton Metropole Hotel, 225 Edgware Road, London W2 1JU. It is very close to Edgware Road tube station. It’s fully accessible.
it is on Sunday 25th at 12:30-2pm, except for speakers – you need to buy a ticket.
http://www.feminisminlondon.co.uk/timetable/

Sisters of Frida at : Woman Up! London, in association with Conway Hall Ethical Society (Saturday 29th Auguest)

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Eleanor, Rebecca and Zara

Eleanor, Rebecca and Zara

Sisters of Frida were at the Woman Up event August bank holiday weekend. 29th/30th August
Conway Hall
25 Red Lion Square
WC1R 4RL London
United Kingdom

Saturday

Panel: The politics of women’s bodies: sexuality, porn and nudity
Collette Nolan – Doodle Your Down There
Jane Fae – Journalist and campaigner
Zara Todd – Sisters of Frida
Rebecca Ryce – Sexpression
Chella Quint – Period Positive
Pandora Blake – feminist porn maker

(see transcript below)

Sunday
Panel – Preventing violence against women and girls, and supporting survivors
Rebecca Bunce – ICchange
Chris Green – White Ribbon campaign
Tamara-Jade Kaz – feminist campaigner

Full progamme at From Woman Up eventbrite

transcript of video clip

Zara:

….seen as innocent vessels (?) that are then corrupted by the world.. And yes, there are some horrific stats about disabled womens’ experience.

We are 4 times more likely to be the victims of domestic abuse and violence. The sexual exploitation of disabled children is massive.

But for me I can’t help but question whether those stats in part, are partly because we de-sexualise disabled women.

Because if by de-sexualising them it means that if they do go to the police and say that they’ve had an experience they can be disbelieved because disabled people don’t have sex.

What is really strange to me is that, despite the de-sexualisation of disabled people and disabled women, it is seen as perfectly acceptable for a stranger to approach me and ask how I have sex, or do I have sex. And they are questions that non-disabled women don’t get asked very often.

And I think that to me is where disabled women need to be represented in discussions in Feminism, about sexuality, about porn because a lot of disabled women have hidden impairments and actually a lot of the women that are being exploited and are experiencing sexual violence are probably disabled women. They might not realise it, you might not realise it, but that doesn’t mean that they aren’t experiencing those kinds of barriers. So it’s really important that we’re being open and honest about disabled women and how they fit into this kind of environment.

Now I’ve been a Disability rights activist for quite a long time, probably longer than some of the panel members have been alive! – in that I started being involved in Disability rights at the age of 10.

I didn’t get involved in the Feminist movement until my mid-20s. The reason for that was that I didn’t feel like I belonged in the feminist movement. I have spent a large proportion of my life trying to be seen as a sexual entity, as a sexual being, whereas a lot of the messages that I’ve received from the Feminist movement over that same period of time have been telling me that I don’t want to be ‘objectified. Actually, as a disabled woman who is told that I don’t have a sexuality, repeatedly by society, the idea of being sexualised and objectified – sounds pretty good to me!

Anyway, on that note I’ll hand over…

END 3:07

Sisters of Frida: Disability & Sex/uality Workshop, Part 1

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Disability & Sex/uality

Workshop, Part 1  

Sisters of Frida invites you to the first Disability and Sex/uality workshop on 19 September 2015 at Unity Church Hall, 1-5pm. This workshop is for self-identified disabled women who want to create a space to talk about disability, sex and sexuality.

The workshop

As disabled women we have a wide range of experiences, positive and negative, around disability, sex and sexuality. Disabled women are sexy, sexual, passionate, loving, caring, desirable, hot, beautiful, strong and much more! Our experiences of sexuality are also affected by different kinds of oppressions as ableism, racism, sexism, heteronormativity, classism and age.

This workshop is the first meeting of the project Disability and Sex/uality we are developing. In this workshop we will explore the different themes around sex and sexuality that arise from our experiences. We will also look at what we want to explore more and what work needs to happen to develop this project.

The project

The idea for this project arose from a screening of the documentary AccSex, which showed how a group of disabled women in India experience their sexuality. This project is part of Sisters of Frida. We are setting up this project out of a need to create a space where we can safely discuss our sexuality in a supportive and empowering environment.

Registration

The topics we will discuss can be sensitive, for this reason, please contact us directly to register and discuss participation as this will be a closed meeting: sof.disabilitysexuality@gmail.com. Note that places are limited, please get in touch as soon as possible. Deadline for registration is 6 September.

Accessibility and needs

The venue is wheelchair accessible. There is an accessible toilet, but without a hoist. There is a small room that people can use for quiet-time. Please get in touch as soon as possible if you need BSL, transcription or if you have other access needs. If you have any concerns or queries about the nature of what might be discussed in the workshop and how it could relate to your experiences, please get in touch. This is a peer-support group, we cannot offer professional support.

We look forward to hearing from you!

Date: 19 September 2015

Time: 1pm – 5pm

Where: New Unity Unitarians

Address: 277A Upper Street, Islington, London N1 2TZ

Contactsof.disabilitysexuality@gmail.com

Deadline for registration: 6 September 2015

Accessibility: Please get in touch to discuss your needs

At Sparks London

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At Sparks London
the spark banner

the spark banner

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.

Ciara Doyle leading the workshop

Ciara Doyle leading the workshop

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’.

Facilitated by:

–Ciara identifies as an activist, an academic, queer, disabled.

–Dyi has been an activist in Amsterdam around issues of gender, race, reproductive rights, and age/generation and now, in London, tries to catch up on issues of disability and sex/uality while fluctuatingly ill and doing a PhD

Dyi was actually not well on the day and Ciara did it on her own with a great interactive discussion on.

The workshop after that was Equality and being inclusive and accessible

Everyone says they are aiming for equality however they do not always factor in being inclusive and accessible. Physical, hidden and logistical barriers can very often prevent people from being properly involved. Although nearly always unintentional, this exclusion has a negative impact on the campaign and access isnt always easy to add on later.

Non disabled people do not always understand what barriers disabled people face in going about day to day activities – eg. having steps to a physical meeting place mean wheelchair users are excluded, having information only available on pdfs mean that blind people who use text reader to access electronic information are left out and if you have meetings that start very early in the morning might mean that people who need personal assistance to get ready or those who have chronic issues might find it logistically challenging to make it to your meeting.

facilitated by Eleanor Lisney, an access adviser who is also a wheelchair user.