Falling Off My Pedestal

A New (to me) Voice

2010-01-19T14:35:00.004+09:00

A post about disability and feminism that echoes what I and other WWD have spoken about, esp. those of us with CP. I haven't the energy to comment coherently at any unfamiliar blogs, but the author of this post might like to check out the link to the FWD group blog in the post above this one. FWD is making changes and giving us a space to talk about our lives as women with disabilities. I can't write at the moment, life hurts too much, but everyone who posts and comments there says something that means many things to me.

Feminists With Disabilities Unite!!!

2009-10-11T15:14:00.002+09:00

Feminists With Disabilities/Forward is a splendiferous and wonderful new group blog written by some of my favourite feminist disability bloggers. They have some beautifully written and fiercely intelligent posts up all ready. Click, read, and spread the (accessible) word.

Wot she said...

2009-01-09T00:27:00.002+09:00

"Because I Are One"

"Laying your hands on me without invitation, strangers, sure isn’t going to speed me up any, but it may well piss me right the fuck off. With some of my friends with certain disabilities, an unexpected assault may tip them completely over."

Dear ABs, please read, mark and inwardly digest this post (and everything else written about disability at Hoyden About Town). The world does NOT revolve around you.

This includes drivers who park their cars across the fucking footpath. Do I plonk my scooter in the middle of the road and wander off and leave it there? No. So stop parking illegally and putting me in danger.

(Wow, it has been a very long time since I posted here, completely forgot how to post links...)

It's been a while...

2009-01-07T20:26:00.002+09:00

Over a year since I've written anything for this blog. 2008 was hell on wheels, medically, emotionally, work-ly. I am planning to write more in 2009. More disability writing, and other writing as I'm able to. If things go as planned, I will be more pain-free, which will give me greater energy to do things other than just survive.

Having a disability is a full-time and a half job, and everything is so finely balanced that when one thing is out of wack the whole house of cards comes tumbling down. It has taken me a long time to pick those cards up, and I'm not sure if I have the whole pack. And, having a disability does not mean that you don't also have to worry about the same day-to-day things that every human being has to deal with. It just means that you have more to do with the the same, or fewer resources.

I've been `running on empty' for a very long time, and some things don't get easier as time passes.

How is it possible...

2007-12-30T19:10:00.000+09:00

...to keep going when you are told every minute of every day that you are of less value than others, that you do not deserve the same care, support and consideration as `normal' people, when the abuses against you are excused and reframed into `care'?

How do you keep going when you see more and more people like you abused, murdered, tortured, neglected, abandoned, and the world turns its back?

For Katie, Katie, Ashley, those who came before, those of us who are here now, and those who will come after

2007-12-30T16:11:00.000+09:00

And for those who fight when I can’t.

When you will not hear my pain
You cannot share my joy

When you will not acknowledge my hate
You cannot feel my love

When you will not allow my weakness
You cannot be supported by my strength

When you will not accept my difference
You cannot appreciate my beauty

When you will not hear me
That doesn’t mean I have nothing to say

When you do not value me
That does not mean I am not valuable

When you will not see me
That does not mean I don’t exist

Copyright Me, sometime prior to 2001, with lines added today.

Dear Able-bodied People....

2007-12-10T23:40:00.000+09:00

...your discomfort with me and my very obvious disability and method of getting around is not my problem. Keep it to yourself. And if you can't think of anything sensible and adult to say to me (hint - "does it [my scooter] go in reverse?", and, "Oooh, when do we get a go on that?", are neither of the above), especially when you encounter me at an event for non-profit workers when I am there as someone who has created and developed a non-profit organisation from the ground up, then you really shouldn't be working in the fields that you are. We don't exist solely for you to do good works on.

And I thought I had problems with social contact... :-/

16 Days Of Activism Against Gender Violence

2007-12-03T19:08:00.000+09:00

The 16 Days Of Activism Against Gender Violence run from November 25th to December 10th. I always mean to start writing something about this on November 25, but as always, this year I run late. I run late because this time of the year, this close to the `Holiday Season', I struggle with the reality of my life and what my family denied me and stole from me, because I was a child, a girl, with a disability.

I have written a number of posts on this blog about my family and how they treated me as a child, a teenager, a young woman. I have given presentations to various groups in real life on what I went through. I have worked on commitees and contributed to resources about domestic violence and people with disabilities. I live independently and have as much control over my day to day life as anyone in my situation can. I escaped. I got out. But I still struggle with the loneliness, isolation, and betrayal as a result of a family and a community that saw me as less valuable and less worthy of love and support because of who and what I was. The effects of child abuse and domestic violence are long lasting, and affect who we become and what we contribute to the world. Some of us lose the fight to survive, and many of us live on the edge every day, fearing that one day it will become too much and we will also no longer be able to hold on. I struggle daily to keep going in a world that reinforces and perpetuates the violence and neglect that I suffered at the hands of my family.

It should never have been like this. But it is. And some days it is just too hard. Many of us will never have the life we deserve. It is long past time for the world to stand up and say, No, no more. All women should be safe and valued, no matter our race, ability, orientation, class or age.

Please click through to The Carnival Of 16 Days Of Activism Against Gender Violence for more posts on gender violence

Other Blogs About The UK Hysterectomy Case

2007-10-09T11:55:00.000+09:00

Penny at Disability Studies Blog has compiled a list of blogs about this case.
Disability Studies, Temple U.: We do know better

Infantilising Women and Girls with Disabilities

2007-10-08T23:44:00.000+09:00

Disabled 15 year-old girl to lose womb

Doctors are preparing to remove the womb of a disabled teenager because her mother fears she will not cope with the complications of adulthood.

Keep my daughter a child, pleads mother

"Every year Alison Thorpe sees her daughter’s life getting tougher. A victim of severe cerebral palsy, the 15-year-old is too big for pastimes that used to bring her joy."

----------

OK. For those who don’t know. I am a woman with cerebral palsy. Many of the women with disabilities I have known in my life have also got cerebral palsy, ranging from mild to severe forms.

In view of this, I feel I *am* qualified to comment, despite what the parents of this girl, and of Ashley X, would like to think. Many of the activists fighting against this invasion of bodily integrity are women with disabilities, and/or people with CP. We live with the realities of disability every single day of our lives. We do know what we are talking about. There are other options. These families act like they are the first to ever deal with children with disabilities growing older. Bullshit. Thousands of families have been there before, and have not resorted to such drastic measures. They have found ways of coping. And if they are not coping, they need to be given support. Funding for assistance, for workshops on menstruation management for caregivers, noninvasive medical alternatives.

Women with disabilities, including those women with severe forms of disabilities have the right to whole bodies, bodies that are not carved into for no medical reason other than to make life convenient for caregivers, or to spare people from the awareness that PWD do grow up, and become adults.

There is also a very disturbing assumption made about the female body, that it is undignified and messy, that menstruation is something to be ashamed of. This is evident in the way society relates to female bodies in general, and then when you add the revulsion - and it is revulsion, I have lived all my life seeing the disgust in people's faces when they look at me because I have CP - society feels when confronted by severe and/or visible disability.

Oh, and just for the record - reducing someone’s external sex characteristics (ie amputating both breasts, as happened to Ashley X), does not, and never will reduce the risk of sexual abuse. For gods sake, babies, infants, toddlers, pre-pubescent children of both sexes, ablebodied and disabled, are abused in horrifying numbers. Mutilating someone’s body is never the answer - especially when it would never be countenanced for ablebodied children.

And by the way, there is no such thing as a ‘victim’ of cerebral palsy. It is not some horrible spectre deliberately stalking people. It’s just there. It’s not the worst thing in the world - more than a few aspects of it can be difficult, depending on circumstances, but practical and emotional support, and being treated with dignity and respect, can go a long way towards living a good life. And needing assistance with toileting and other personal care tasks is not inherently undignified or degrading - unless people around you behave like it is.

Parents, please remember - there are others who have gone before you, there are people with disabilities who have lived the reality of what your child is living, there are families who have brought up children with disabilities through to adulthood, seek them out, seek us out, listen to what we have to say about what has made our lives easier and what hasn't, what really constitutes dignity. There are alternatives to these mutilations.

And for those who think that people with severe disabilities - including those with cognitive disabilities - cannot have consenting sexual relationships, please read this story.

“A pioneering policy is breaking an old taboo by encouraging disabled teenagers to form sexual relationships, with help from carers if necessary”

“Jan Symes remembered every detail of the scene. A 17-year-old girl with straight brown hair pulled back into a ponytail, heavy purple boots and clothes ill-suited for her age sat opposite her in a small office at Treloar’s College, near Alton in Hampshire.

The teenager had cerebral palsy and was sitting in a wheelchair, using a machine to speak. She lifted her head, looked across at Jan and asked: ‘Do you think it is all right for me, as a very disabled person, to fancy someone?’ Symes was horrified. ‘Will society think it is disgusting?’ the girl went on.

Today the college for physically disabled teenagers over 16 goes public about a ground-breaking ‘sexuality policy’ that began to take shape that day two years ago, when a young woman shocked her counsellor by asking whether she had the right to fall in love.

A policy was designed that aimed to break down one of society’s most enduring taboos: that of disability and sex. And now, for the first time, staff are ready to speak out about the controversy, legal wrangling and heated debates involved in producing a three-page document that fundamentally changed the ethos of the college. Students, it stated, not only had the right to pursue sexual relationships, but would be assisted physically and emotionally by specially trained staff.

Now other colleges for the disabled are looking to make a similar change. Like Treloar’s, they have young people whose disabilities are so severe that even to hold hands, cuddle or kiss is impossible without help.”

Randomly Me...

2007-09-30T22:33:00.000+09:00

Back in July, Imfunnytoo at Midlife And Treachery tagged me for the 8 Random Things meme. I started this post in July and have only got back to finishing it now (in the same year, well done oh chronic procrastinator!!). I think someone else may have tagged me, as well, but I haven't a clue now who that was.

I love musicals and musical theatre from all eras and want to be reincarnated as either Cyd Charisse or Ann Miller.
Before I was diagnosed with Cerebral Palsy at age 2 the doctors thought I might have Brittle Bone Syndrome. In nearly 30 years of wobbly walking and constant falling over and knocking into things I've only ever broken two bones - my tail-bone (yes, I blanked on how to spell the technical term!) at age 18 and the small bones in the back of one hand in my late 20's/early 30's - I'm still at a loss to figure out how anyone even thought of BBS.
I'm scared of the dark - even now at age 33.
I am TERRIFIED of being buried alive.
A distant ancestor on my father's side of the family was a Lady-In-Waiting to Mary, Queen of Scots.
When I was younger, I used to have an imaginary friend that was a flea named Esmeralda.
According to my GP, I have `petite' ear canals.
I luuuuurve stationery and stationery stores. I could browse in them for hours!

I'm not going to tag anyone, I'm assuming that everyone who wants to do this has already done it by this time. ;-)

Violence And Women Of Colour

2007-09-25T23:58:00.000+09:00

I just received the following comments about an important issue for America women of colour. As I said to Fallon, I'm a white Australian (not that most people who come to my blog would know - I've not mentioned my race or where I live till now), so I'm not really someone who is qualified to comment as she requested, but I do support the efforts of all women from all backgrounds to raise awareness of violence and invisibility, so I'm reposting her comments in this post, and urge others to go to Fallon's blog and support her in this.

Hello,
My name is Fallon and I’m organizing with other women of color around the Dunbar Gang Rapes and West Virginia Torture/Rape case. Well, I was wondering if you have time to participate in a phone conference on Friday, September 28, 2007 at 9pm/central about organizing to end silences surrounding Megan Williams’ torture and rape in Logan and the gang rape of several Black women in West Palm Beach Florida as well as stories that go unheard because it involves a woman of color such as the Newark imprisonment of the four lesbians for protecting themselves from a male aggressor.
Well, I’ve been circulating a 2 minute movie entitled, “How do you keep a Social Movement Alive.”
http://www.jumpcut.com/view?id=E44BFBCE67BF11DC9030000423CF037A
This movie documents the silence surrounding Megan Williams’ torture and rape in Logan and the gang rape of several Black women in West Palm Beach Florida. The purpose of this movie is to document the silences within our relationships, within our homes, within our families, within our communities, within our jobs, within our schools, within our churches, temples, and synagogues, within our governments, and within our world.
We have a blog, but given the organizing we are trying to do, I need to reorganize the blog and use wordpress instead of blogger. This is the current blog,
http://documentthesilence.blogspot.com/
If you can’t do the phone conference would you interested in being apart of the Women of Color Bloggers Breaking the Silences Contingency on the Web which would mean inundating the web with information about Wearing Red Campaign on October 31, 2007 as well as circulating clips and other media trying to inundate the web with stories of violence committed against women of color.
I look forward to connecting with you,
Fallon
You can email me at beboldered@gmail.com.

here's the movie link,

http://www.jumpcut.com/view?id=E44BFBCE67BF11DC9030000423CF037A

Violence against any woman is unacceptable. Sadly, the more disenfranchised by society a women is (by race, ability, class, income, sexual identity, age, etc) the more likely they are to be abused and mistreated.

This must stop.

We all have a responsibility to do what we can.

I'm usually more eloquent about this topic, but I spent an hour and a half on the phone today with my best friend. She is being seriously verbally and emotionally abused by her partner, who has also been physically violent - not to her, yet, but has broken furniture and belongings. She has started to realise that she needs to get out, but she is in a foreign country where she doesn't speak the language too well. I know she'll get out, but it's so hard watching someone you love go through this. I'm exhausted. There is so much I should mention here, the violence and abuse Aboriginal women in Australia are subjected to, the continuing silence and denial of the reality of violence against women with disabilities, the way things are so much harder for women who are marginalised on more than on count..., etc, etc. And I will talk about these things and link to those who know more about certain issues than I do, just not tonight.

Until I get back to this, please have a look at the links on the sidebar, there are many others writing about these issues. Read and absorb what they have to say. And don't stay silent on violence and abuse.

I'm Still Here... Sort Of!!!!

2007-08-19T20:05:00.000+09:00

Well, I've been terribly slack, with respect to this blog, despite all good intentions.

It's been a busy few months, stabilising my mood, having a holiday with a lot of much needed rest, and finally finding my way out of a particularly horrific two year depression. I've been revelling in the fact that I can read properly again. One of the worst symptoms of depression for me is a complete inability to read, as reading=breathing for me, it really does my head in. But now I'm back to what laughingly passes for `normal' in my world. All of my recent CP-related phyiscal problems seem to have eased off as well. Yippee!!

Living with disability/ies is certainly a full-time job!

So I do intend to start posting here again very soon - I have links to new resources to share, rants to `rite', and at least one fun meme to do.

Stay tuned!

Living

2007-06-10T22:34:00.000+09:00

I found the following on an email list I lurk on. There was no link or any other reference, this is the entire speech.

------------

This was a speech made by Pulitzer Prize-winning author, Anna Quindlen at the graduation ceremony of at American university where she was awarded an Honorary PhD.

"I'm a novelist. My work is human nature. Real life is all I know. Don't ever confuse the two, your life and your work. You will walk out of here this afternoon with only one thing that no one else has. There will be hundreds of people out there with your same degree: there will be thousands of people doing what you want to do for a living. But you will be the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk or your life on a bus or in a car or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank accounts but also your soul.

People don't talk about the soul very much anymore. It's so much easier to write a resume than to craft a spirit. But a resume is cold comfort on a winter's night, or when you're sad, or broke, or lonely, or when
you've received your test results and they're not so good.

Here is my resume: I am a good mother to three children. I have tried never to let my work stand in the way of being a good parent. I no longer consider myself the centre of the universe. I show up. I listen. I try to laugh. I am a good friend to my husband. I have tried to make marriage vows mean what they say. I am a good friend to my friends and them to me. Without them, there would be nothing to say to you today, because I would be a cardboard cut out. But I call them on the phone and I meet them for lunch. I would be rotten, at best mediocre, at my job if those other things were not true.

You cannot be really first rate at your work if your work is all you are. So here's what I wanted to tell you today: Get a life. A real life, not a manic pursuit of the next promotion, the bigger pay cheque, the larger house. Do you think you'd care so very much about those things if you blew an aneurysm one afternoon or found a lump in your breast?

Get a life in which you notice the smell of salt water pushing itself on a breeze at the seaside, a life in which you stop and watch how a red-tailed hawk circles over the water, or the way a baby scowls with concentration when she tries to pick up a sweet with her thumb and first finger.

Get a life in which you are not alone. Find people you love, and who love you. And remember that love is not leisure, it is work. Pick up the phone. Send an email. Write a letter. Get a life in which you are generous. And realize that life is the best thing ever, and that you have no business taking it for granted. Care so deeply about its goodness that you want to spread it around. Take money you would have spent on beer and give it to charity. Work in a soup kitchen. Be a big brother or sister. All of you want to do well. But if you do not do good too, then doing well will never be enough.

It is so easy to waste our lives, our days, our hours, and our minutes. It is so easy to take for granted the colour of our kids' eyes, the way the melody in a symphony rises and falls and disappears and rises again. It is so easy to exist instead of to live.

I learned to live many years ago. I learned to love the journey, not the destination. I learned that it is not a dress rehearsal, and that today is the only guarantee you get. I learned to look at all the good in the world and try to give some of it back because I believed in it, completely and utterly. And I tried to do that, in part, by telling others what I had learned. By telling them this: Consider the lilies of the field. Look at the fuzz on a baby's ear. Read in the back yard with the sun on your face.

Learn to be happy. And think of life as a terminal illness, because if you do, you will live it with joy and passion as it ought to be lived".

"Disability Do's and Don't's" Or Damn I Wish I'd Written This

2007-05-20T17:30:00.000+09:00

I've fallen off the blogwagon somewhat lately, but I meant to post this a while ago. I'm in the middle of some world class procrastionation at the moment, avoiding important work-related tasks (ones that I'm being *paid* for no less), so of course I must catch up on blogging stuff!

The following is a post that the Ranter wrote at her blog, Disability Rants, a couple of months ago, and I thought it was so good and so important that I asked her if I could post the whole thing here. I can only add a resounding, "hell, yes" to all of her points. Please go and visit her blog as well, she has some fantastic posts.

"Disability Dos and Don'ts

Don't:

1. Ask us what's wrong with us.
2. Ask us what happened to us.
3. Ask us how we do what we do.
4. Tell us we're awesome for doing the ordinary.
5. Think we're awesome for doing the ordinary.
6. Assume anything.
7. EVER try to freakin' push us before asking if we need help.
8. EVER try to freakin' push us after asking if we need help and we say no.
9. Swear at us when we get pissed off when you don't respect our answer, decision, space (pushing us without asking is as invasive as me going up to you and taking your briefcase out of your hand without asking when you don't know me from Bob).
9. Rush ahead to open doors for us.
10. Apologize for not having helped us in time when it seems we're doing just fine without you.
11. Say stupid things like "I should be doing that for you" when we reach the door first and hold it open for you.
12. EVER pat us on the freakin' head!
13. Ask us what disability we have before getting to know us.
14. Ask us anything disability related before getting to know us "just because you're curious". Who the hell are you, and how important do you think your curiousity is, freak?
15. Ask us if we play basketball.
16. Try to give us money (unless it's a cheque with 6 digits).
17. Tell us how freakin' brave we are unless we just fought a bear.
18. Address our companions when asking questions meant for us.
19. Ask "are you sure?" when we tell you we don't need help.
20. Ask "do you want to go out" if we happen to be sitting by a door.
21. Assume we like to listen to your problems coz we'll "understand" since obviously our lives have been hard like yours, right?
22. Assume that a physical, visual, auditory disability, speech impediment, or other means we couldn't possibly hold a Masters degree, good paying job, own a condo, drive a car, marry, have children, make decisions for ourselves.
23. Shout at us.

Do:

1. Use your freakin' common sense.
2. Talk to us.
3. Get to know us.
4. Listen.
5. Establish some sort of relationship before you ask us anything personal.
6. Allow us to be as independent as we can be.
7. Wait for us to ask for help.
9. Let us open the door for you if we reach it first.
10. Give us a chance before you come barging in to "rescue us".
11. Think twice before you open your mouth.
12. Ask us out for coffee.
13. See us as human beings.
14. See us as women or men.
15. Consider us as wives, husbands, partners, friends, lovers, intellectual equals
16. Relax.
17. Laugh.
18. Be open.
19. Remember that we have to deal with people like you every hour of every day."

The Ranter also added a few more in the comments:

24. Don't tell us we're going to get a speeding ticket.
25. Don't tell us we're good drivers.
26. Don't tell us how well we manage our wheelchairs.
27. Don't lean on our wheelchairs.

Blogging Against Disablism Day 2007

2007-04-22T01:01:00.001+09:00

I've been out of circulation lately, had a really bad depressive episode that has resulted in going back on to anti depressants for the first time in over ten years. But if my energy levels allow I hope to participate in this year's BADD. There were some fantastic posts last year, and I highly recommend participating in/reading the sure to be even better posts this year. Click on the banner for more information.

Better late than never... International Women's Day 2007

2007-03-14T17:21:00.000+09:00

I just read this excellent post by Andrea, and realised that I had forgotten to write anything about International Women's Day a week or so ago. Then I remembered that I had written something in the last two or three weeks that would fit the bill. Over the last few years that I have been `out' as a disability activist and as a feminist, I've come across many people, online and off, who have been unable to understand that disability issues, and the lives and concerns of women with disabilities are relevant to feminist thought and action. The fact that women with disabilities are actually women is something that a lot of people have trouble grasping. And so, after a lifetime of having my gender denied, of being sexless and not quite human to too many people, I finally exploded a few weeks ago, and this is the result.

Feminism is meaningless if it doesn’t include *all* women and the issues that affect them. Just because some people don’t want to admit the existence and relevance of intersectionality in many women’s lives, that doesn’t mean that it doesn’t exist.

I can give many examples of the way sexism and ablism intersect in my own life and the lives of women with disabilities I know personally, the following are a very small sample.

The woman with Cerebral Palsy whose husband was violently abusing her and whose speech impediment meant that on the night he attempted to kill her that she wouldn’t have gotten prompt police assistance if the person on the other end hadn’t already spoken to her on other calls and realised that she wasn’t drunk, stoned or kids making prank calls. Her husband abused her physically, sexually, financially, and emotionally for years and when she tried to tell people about it, their response was, “but you’ve got a disability, he wouldn’t treat you like that”. And the custody case for their kids, where he tried to paint her as an unfit mother because of her disability. I have heard dozens of those stories, just change the disability of the woman involved and the partnership status.

A women with Muscular Dystrophy who was told by doctors that she couldn’t have children and when she and her husband tried to adopt was they couldn’t, because she’s in a wheelchair. Never mind that women in wheelchairs and with other disabilities all over the world have been successfully parenting children for years. They did eventually get pregnant, and she had to put up with personal questions and remarks from complete strangers about how she got pregnant and whether she *should* be pregnant. Again, not an uncommon story in the lives of women with disabilities

Me, at 13, whose ‘mother’ had some bee in her bonnet about the fact that I didn’t get my period on the dot of turning 13, and assumed that because I was born prematurely and had a developmental disability that this would affect the timing of my period, had me up on the local doctor’s exam table with this doctor’s hand between my legs giving me an internal examination. Neither of them told me what he was going to do, or why (no medical reason for this by the way - wildly inappropriate and unprofessional on his part - was told by female medics and women’s health nurses many years later that this was totally unwarranted). Invasive and unecessary gender related medical abuse. Not at all uncommon for women with disabilities, and my experience is one of the mild ones. There are women who’ve been sterilised, who’ve had forced abortions, had their children taken from them, all without their knowledge or informed consent and all because of society’s prejudice about women with disabilities.

And do I even need to mention women and mental health issues and the genderbased violence, neglect and dismissal of women as a result?? No, thankfully, for the sake of my overworked fingers, I don't have to, right now. The Goldfish has an excellent post up about women, sexism and mental illness that fits the bill nicely.

From the Women With Disabilities Australia website - the peak body for women with disabilities in Australia (and we have much better health and welfare policies here in Australia than the US does, based on what I hear and read from US women with disabilities):

“Women with disabilities are, from the government record, one of the most marginalised and disadvantaged groups in Australia. Analysis of data available from a variety of sources, gives us the following information about women with disabilities in Australia (Frohmader 2002).

* Women with disabilities are less likely than their male counterparts to receive a senior secondary and/or tertiary education. Only 16% of all women with disabilities are likely to have any secondary education compared to 28% of men with disabilities.
* Women with disabilities earn less than their male counterparts. 51% of women with a disability earn less than $200 per week compared to 36% of men with a disability.
* Only 16% of women with a disability earn over $400 per week, compared to 33% of men with a disability.
* Women with disabilities are less likely to be in paid work than other women, men with disabilities or the population as a whole. In fact, men with disabilities are twice as likely to be in paid employment as women with disabilities.
* The percentage of women with disabilities being assisted by Government funded open employment services continue to decline. Open employment and disability employment services assist twice as many men with disabilities as women with disabilities.
* Women with disabilities’ participation rates in the labour market are lower than men with disabilities’ participation rates across all disability levels and types.
* Women with disabilities are substantially over-represented in public housing, comprising over 40% of all persons in Australia aged 15-64 in this form of tenure. Women with disabilities are less likely to own their own houses than their male counterparts.

Low levels of education relegate women with disabilities to lower eschelons 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.”

“Overseas studies have found that women with disabilities, regardless of age, race, ethnicity, sexual orientation or class are assaulted, raped and abused at a rate of at least two times greater than non-disabled women (Sobsey, 1988, 1994; Cusitar,1994; Stimpson and Best,1991; DAWN 1988).

Sobsey (1988) suggests that 83% of women with disabilities will be sexually assaulted in their lifetime. A qualitative study by Nosek, found approximately one third of women with physical disability had experienced sexual abuse at some stage in their life (Nosek, 1996). Similarly, in Doucette’s study of Canadian women with disabilities, 40% experienced abuse and 12% had been raped (Nosek, 1996).

There are relatively few studies into the incidence of physical violence and rates vary widely. A study for the Canadian Ministry of Community and Social Services in Toronto found 33% of women with disabilities were assaulted mostly by their husbands compared with 22% of non-disabled women (Nosek, 1996). Feuestein estimates that upward of 85% of women with disabilities are victims of domestic violence in comparison with 25% to 50 % of the general population (cited in Waxman, 1991).”

Full article and cites at http://www.wwda.org.au/odds.htm

And if any of this sounds angry, yeah, I’m angry, I’m fucking furious. I’m furious that I constantly have to fight to be seen as more than just a ‘disability’, a ‘pity or charity case’. I’m sick of my very existence being put at risk, at my sanity being jepordised by having to live in a world where I am told - literally as well as figuratively, that other people, other women tell me that they think my life is meaningless, is a life that they would rather be dead than have to live, (and I have been accosted by people, women and men, in person to be told this), is something that they don’t want to concern themselves with.

I am a woman. I am a feminist. And my concerns do not fragment the movement. The inability of ablebodied women to acknowledge that my issues are also feminism’s issues fragments the movement.

My concerns belong in feminism, as do the concerns of all other women with disabilities. It is to your benefit, not just ours, that this is the case. Just because you’re not disabled now doesn’t mean that won’t change in the future, and certain concrete results of sexism - chronic illnesses resulting from poverty and poor health care, domestic violence - cause many disabilities in women.

This just keeps happening. Again and again.

2007-02-10T01:57:00.000+09:00

Couple carry out campaign of sadistic abuse

"A sadistic couple who 'tortured' their disabled toddler during a horrific campaign of sustained abuse just weeks after social services returned the youngster to them were caged for a total of 22 years. [...] When the child, who cannot be named, was taken in by foster carers they referred to her as a "sunny child" who was physically capable despite her disability.

Following the abuse she was left physically incapable of walking."

Just something else to echo in my brain when I have to listen to some dipshit tell me that "No one would ever hurt a child with a disability", or, "But their (your) parents must love them (you)". Denial like that enables horrors like this to happen. It's ironic, or just fucking infuriating, when you think about it. Able-bodied people are automatically assumed as being capable of good parenting, and the saccarhine crap that gets spouted about how `amazing' they are if they do have a child with a disability is endless, even if there is evidence to the contrary. But have a disability and have a child and you're automatically assumed to be incompetent in a parenting role, often with no evidence of incompetence. I've heard story upon story from other women with disabilities I know who've been questioned and attacked for having children, simply because people won't get past their prejudices about what people with disabilities should or shouldn't do.

It is some very small comfort to notice that nobody who is commenting on the story has so far trotted out the usual justification of abuse that many stories about the abuse and/or murder of people with disabilities get. The one where the supposed difficulty of having or taking care of a child with a disability justifies the murder or abuse. That was one I heard personally applied to my own story, too many times told, "But you don't understand, it's so difficult to have a child with a disability."

Meanwhile, the difficulty of actually being subjected to abuse is something that they will not acknowledge. Believe me, there is nothing in the world that is harder than living with the knowledge that your own parents abused you, that they didn't see you as human or worth protecting. The little girl in that story will go through hell dealing with the afteraffects of what was done to her. Living with cerebral palsy is a walk in the park, in comparison.

Disability History and Disability in the Arts

2007-02-04T21:41:00.000+09:00

The Seventh Disability Blog Carnival has been up at The Disability Studies blog for a week or two. As usual, it is full of fabulous writing on disability issues.

In the absence of any real writing from me lately, I'd like to point you toward two of my favourite new blogs, Chewing The Fat - gloriously well-written meditations and stories about disability, and Women of Colour Blog, passionate, committed and thoughtful writing about race, women, feminism, and poverty and many more topics. It is one of the few `mainstream' blogs out there that gives time and space to disability issues in a respectful and mature manner.

I seem to have lost the ability to write about anything in a coherent manner at the moment. It's very ironic that this has happened at a time when I have more opportunities to express myself. Some sort of subconscious self-censoring and silencing thing. I'm pulling back from the world more and more these days. It's not a bad thing, and I'm happy to see so many people who are able to write brilliantly and eloquently about issues that are important to me.

Some Thoughts...

2007-01-14T01:28:00.000+09:00

"Normal" is a myth.

"Independence" is a myth.

People who say they love someone aren't always telling the truth.

The world is not a just place.

There are always people who will justify terrible injustices if it helps them keep their illusions.

No one is beyond scrutiny.

Disability and Relationships

2007-01-14T00:57:00.000+09:00

The Sixth Disability Blog Carnival is up at The Life And Times of Emma. Lots of detailed, thoughtful and well written posts on disability and how it can affect friendships/relationships. Well worth a visit.

Written for a creative writing class a few years ago...

2007-01-12T21:57:00.000+09:00

[I've been going back and forth over whether or not I should post this here. At the moment, I've decided that I should. And yes, I am rather fixated on writing about invisibility - there is a reason for that, you know.]

BECOMING INVISIBLE
2002

The difficulty is knowing where to start, what to tell, what not to tell. The difficulty is knowing whether or not to tell at all. The moral responsibility I feel that makes me want to lay it all in front of the world, the pressure to tell what cannot be told, what cannot be heard, what cannot be borne continually nudges at me. But I want to forget what I know, hide it, avoid it.

And so I vacillate, bouncing back and forward nervously on my courage, trying to convince myself that it’s safer, better this way, that I’ll save myself the terror of disbelief. But I am pricked by something inside me that instinctively wants to regurgitate what I know, consequences and cowardice be damned. But where to start. If I think too long I know I’ll never start. So I stop thinking and just jump in. And start with feeling.

The feeling of fingers on flesh. The harshness of the distant clinical touch, the reciprocal revulsion. But that’s no start. It’s too distant, you have no idea what I’m talking about, do you? And so cowardice wins. This round at least. So try again.

The insistent hum of the fluorescent lights. The sharp shock to the retinas of the reflected glow off the white clinical walls, the terrified isolation. And that doesn’t work, either. The difficulty is obvious, I’m sure you’ve picked out the flaw already. And cowardice, or its better dressed sister, self preservation, wins this round too. We’ll try again, shall we?

A child stands in the middle of a room. She wears a white gown. She is surrounded by men - well, mostly men, who are also wearing white. They stare, and discuss, and scribble on pads of white paper. The child is staring too, but she is not talking, and can write nothing down. She is almost naked under the gown, wearing nothing but green cotton underpants with white spots. She stands with an unfamiliar rigidity, her body stiff, fear layered on a everyday tension. She tilts to one side slightly and there is less natural movement in that side. She stares, but she is not looking at the men, her gaze is fixed on a spot past their heads. And unlike the men in the room, her face does not hold a confident arrogance that can simultaneously take, assess, and discard its object without a second thought, it is a blind stare that turns in on itself and has no object but escape. The men talk amongst themselves, ask endless questions that are addressed to, and answered by each other, even though the child is the subject of the clinical inquisition.

Every now and then she is ordered to walk up and down the room and they throw around disconnected words and phrases like, ‘spastic movements’, ‘unnatural gait’, ‘inflexibility’. Or one of the white-coats leaves his seat to lift the child’s arms away from her body and hold them in midair for what seems like hours. Or another will ---

But no, this way doesn’t work either, it’s boring, easily ignored. We’ll go down another path. How about this?

You stand in the middle of the consulting room. The cold air from the air-conditioning lifts goose-bumps from your exposed flesh. It feels like you have been standing for hours, your left leg is starting to weaken, to wobble slightly, and it takes every bit of self control you have to keep standing up straight. The doctors stare at you, and talk about you using words you don’t understand. They call you ‘the patient’, and look through you coldly, scientifically. Although you don’t know exactly what they are saying, you know they are picking out all things about you that are wrong, that don’t work as they should. Every time one of them looks at you, they find another thing wrong.

You stand there, shivering, and you can feel yourself becoming nothing more than a collection of broken parts, legs and arms and a brain, damaged and defective. You stand there until you can’t even remember your name, or how old you are, or anything else about yourself, other than what is wrong with you. The room seems to get bigger and bigger, and the empty space around you is endless and unforgiving.

From a great distance the piercing eyes of the doctors continue staring at you, and look right through you. You can feel a series of glass shells surround you, one for every person in the room. They slide around you, one by one, slowly, smoothly, without making a sound. And at the point where the indifferent gaze of each of your observers becomes too much, you can hear a metallic twist and click, like the key in a lock, shutting you off from the world. Until at last, you are surrounded by a dozen of these glass shells. And inside the shells, deep inside yourself, you feel another empty space open up, black and cold. A space filled with the almost unbearable pain of forever being looked at, but never being seen, of always being observed, but never being known. But you will try and pretend for many years that the space does not exist, until the terror of it will cause you to spend a night trying vainly to fill the space with handfuls of little pea-green pills. But this will not work, and you will spend the rest of that night crouched over a bucket painfully vomiting into it the pills, and ---

And definitely not. I am undecided as to whether or not that works, but I have no doubt that it is possibly too painful, too manipulative of my audience, perhaps too unforgivably gratuitous. So I will try out my third and final option.

Mending the flaw in this whole drama, there needs to be an ‘I’, there is a ‘she’ and a ‘you’, but there is no ‘I’. You have been expecting it, I know. But that’s all I know. I don’t know how to put myself into this, I don’t want to put myself into this. I can’t. There is no ‘I’ here, there cannot be. I do not exist, I do not feel, I do not breathe. I am not here, I cannot breathe, I cannot feel, I cannot exist. I am invisible.

*~*~*~*~*~*~*

"In A Fit Of Rage"

2007-01-10T19:51:00.000+09:00

An excellent post at Random Reminiscing Ramblings: Dear ableist

I haven't written about Ashley yet, aside from the occasional comment on other posts. I don't know if I can. Ashley's parents remind me so much of my own parents, and that's not a good thing.

[Monograph for university course 2001] The Tragic Body

2007-01-09T12:58:00.000+09:00

I am sick to death of my disability being thought of as a major tragedy in my life and the lives of those around me. The real tragedy is society’s reaction to disability. Because it not only has a lasting and damaging effect on people with disabilities, but because it also has a lasting and damaging effect on society itself.

People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.

Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.

Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.

I believe that the real tragedy for people with disabilities is society’s inability to cope with them. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others – both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.

Ultimately, society tries to, and tragically often succeeds in denying our humanity, our right to live full lives, our very existence.

[Monograph for university course 2001] The Marginalised Body

2007-01-09T12:52:00.000+09:00

In today’s world, with the importance placed on physical ability, strength and beauty, it is easy to forget that an entire section of our society has marginalised, ignored and made invisible, by these beliefs and convictions. For too long people with a disability have been excluded from life because our bodies are not within the range of ability and appearance that is deemed acceptable by society. A society that adheres to the simplistic belief that what is beautiful on the outside must be beautiful on the inside; and therefore what is deformed, misshapen, ugly, and disturbing on the outside, must also be these things on the inside.

The body has been used for centuries as a metaphor for internal states of mind, beliefs and feelings. With literature and movies such as "Phantom of the Opera", "The Hunchback of Notre Dame", "The Tempest" and "Peter Pan", along with many others, the physical deformities of a character are used to indicate evidence of personality defects. Unfortunately people often forget that this is nothing more than a literary device, and it is not a true and accurate reflection of real life.

Being disabled is not seen as a real valid experience of life, but solely as a metaphor. A metaphor for weakness, a metaphor for eternal childishness, a metaphor for evil and depravity, but not as a real space in which to exist.

If you are disabled, you are only accepted if you martyr yourself on the altar of the world’s perfectionism. If you kill yourself, striving to overcome their prejudices. A dead, inspirational cripple is always much more acceptable than a cripple who lives by her own rules.

It is very easy for most people to look at the marginalisation and isolation of people with disabilities, and explain it away by seeing it as a natural result of having a disability. In this way, society shifts the burden of change onto people with disabilities themselves, and can avoid seeing the very real social conditions that cause our oppression.

The human body is not infallible, that is inherent in our existence. Illness, pain and death come to all of us, therefore we must learn to accept it – in others and in ourselves, or in denying it risk destroying ourselves totally in the process. When we strip away the glittering surfaces of our outsides, of our facades that we struggle to make so perfect. When we strip all that away, all we see, and all we have left is imperfect, flawed. What makes us human are our flaws and our imperfections, our disabilities, and we are no less human for them. That is what makes us human, nothing more and nothing less.

We need to change society’s abhorrence of the imperfect body, which results in an expectation of perfection and perpetual youth. Society does not seem to realise the dangers of focussing on the external as opposed to the internal; and a fixed point in time as opposed to growth, evolution and development; and our insistence on not accepting and intergrating death and disability into our lives. This naïve thinking results in the marginalisation of those of us who cannot or will not conform to these expectations, and creates a slowly decreasing noose that pulls in those standards tighter and tighter leaving the elite few, with physically perfect bodies (or the illusion of perfection – there is no such thing in reality) controlling the rest of us. This total focus on the outside obscures the fact that what is in us that makes us human are our hearts and minds and souls, and what makes us alike are our imperfections and our differences.

It is only possible for someone to be trapped in their physical body if their physical being and ability is the only thing about them that is acknowledged and valued. No matter how paralysed a person is, if they are regarded as valuable for something other than their physical abilities or lack thereof, if they are seen as something other than the sum total of what they look like, then they will never be trapped. They will always be free. Because true freedom is not dependent on physical perfection. True freedom is freedom of the heart and mind, of the spirit and soul, and that can never be taken from us.

Recognising the humanity of people with disabilities is not an act of political correctness; it is an act of emotional and social depth and maturity. It enables us to round out the myths and stories of human experience. The more we can recognise the diversity of our live, the more we can celebrate the commonalities. When we diminish others, we diminish ourselves.

[Monograph for university course 2001] The Forbidden Body

2007-01-09T12:41:00.000+09:00

[I wrote this before I had spent much time on the internet and found that there was a lot of writing by people with disabilities in cyberspace. If only the internet had existed when I was a teenager. :-) ]

My pocket Macquarie dictionary defines the word `disabled’ as “to make unable; cripple, incapacitate”. However as a person with a disability you soon learn that this definition is incomplete. You soon learn that there are definitions that are unspoken, unwritten, and it is these definitions that take precedence. You learn that being `disabled’ in the eyes of the world means more than any dictionary can define. Being disabled means being not good enough, not normal enough. Being disabled means you are too much, too dependent, `a fire hazard’. Being disabled means that you must put up with sub-standard treatment in all areas of life. It is more difficult to find a job, a place to live, friends to socialise with. You must settle for a life that is reduced to what the able-bodied community will allow you. But above all, being disabled means being silenced. In a world where every little detail of life is held up to scrutiny by the media, and there are more and more opportunities to learn about lives other than our own, the lives of disabled people as we live them are disturbingly absent.

There is plenty of information about disability available, page after page, and book after book written about people with disabilities, all written by able-bodied professionals, or able-bodied parents of children with disabilities, or able bodied ethicists, but very little of it written by people with disabilities themselves.

We are forbidden to talk about our lives as people with disabilities, yet at the same time, people expect us to talk incessantly, justifying our lives and explaining what is wrong with us, and justifying the assistance that we need, but never really wanting to know anything about who we are. They suck pieces of knowledge out of us, the facts about our disabilities, about what makes us different to them out of us, like emotional vampires, voyeuristic, never wanting to get to know us as people. We are forbidden to talk about our lives, we are too much reality.

The experience of being disabled is very rarely written about with force, and power, and passion, and with the recognition of our physical reality as being an acceptable one, and not something that needs to be `cured’. It is usually written about as a pitiful, pathetic way of living, and one that should always be exchanged for something `normal’. That is, `normal’ as it is designated by others who are looking at you from outside of your life and experience.

The most difficult thing about being disabled is not the physical pain, or the barriers to living life. The most difficult thing to deal with is other people’s perceptions, people’s barring us from existence, assuming that we are not quite human, that is what hurts the most.

Human beings fear the unknown, so that is why those of us with disabilities must tell our stories, all of our stories. The good, the bad, the painful and the difficult, so that we can know ourselves, and others will know us, and therefore there will be less fear. People’s perceptions must be changed, and they can be best changed by those of us who live on the outside, who are not allowed into the charmed circle of `normal’ people, we who see what others cannot or will not see. We can see what others’ attitude can do to us and to themselves. The usual ways of thinking about disability need to be challenged, and in being challenged, need to be changed. Human beings grow through evolving and changing, we are not meant to stagnate in one way of being. Our lives, our attitudes and our progress are not meant to stay the same.

It may be acceptable for others to define how they see us, but it is no longer acceptable for them to define who we are, or how we should see ourselves. That is a definition that only we who live with the reality of being disabled and the challenges this brings can give. It is only we who can define who we really are. And this definition must be taken as real and valid. As people with disabilities we have to demand the right to define ourselves, as WE see ourselves, and not allow who we are to be defined by how others see and react to us. We must show the world that the way they perceive us is only THEIR PERCEPTION of us, it is not who we really are, it is not what we can become.

[Monograph for university course 2001] The Invisible Body - Poem

2007-01-08T22:40:00.000+09:00

[As part of the BA in Creative Writing that I started several years ago - and haven't yet finished - we had to write a monograph on a chosen subject, mine comprised several pieces of writing on disability. I'm posting each piece in a seperate post. Rereading this, I'm not entirely happy with a couple of lines, but I do like the premise of it overall.]

When you will not hear my pain
You cannot share my joy

When you will not acknowledge my hate
You cannot feel my love

When you will not allow my weakness
You cannot be supported by my strength

When you will not accept my difference
You cannot appreciate my beauty

When you will not see me
That does not mean I don’t exist

So much for `care'

2007-01-08T22:33:00.000+09:00

Someone remind me what century we are living in. And so much for living in a supposedly civilised, first world country. This kind of thing keeps happening again and again.

New abuse allegations

PHILIPPA DUNCAN

January 03, 2007 12:00am

NEW allegations have emerged of physical, verbal and emotional abuse in a government disability home.

Police are investigating a staff member at a Hobart respite home providing short-term care for people with extreme physical and intellectual disabilities.

Staff allege the man dragged disabled clients by their hair, hit them, told them to "f--- off" and called them names including "f---ing idiot".

They say he dragged a boy across concrete, skinning his knees badly.

Staff say terrified clients would cringe when he shouted obscenities or threatened them.

He is accused of humiliating clients and taunting them.

Last year nine government disability group homes were closed because of serious systemic problems.

In the homes, maggots infested a young brain-injured man's feeding tube and a quadriplegic man's broken leg was not noticed for several days.

Disabled men on a trip were photographed in tourist stocks with a "lunatic" sign.

At the time, then Health Minister David Llewellyn apologised to families and said the standard of care had not been good enough.

Staff at the Hobart respite home at the centre of the latest allegations made their complaints about four months ago and have become frustrated at what they say is the Government's lack of action.

The Health and Human Services Department hired a private investigator to examine the allegations and received his report last month.

Staff believe they have been victimised for blowing the whistle and it is understood they have complained about losing shifts and receiving no support from management.

They have all taken stress leave.

The supervisor has been switched to another government facility.

Disability Services manager Graeme Foale confirmed the allegations had been referred to the police.

"Staff and clients will be advised when the investigation has been completed," he said.

Opposition health spokesman Brett Whiteley said the matter raised questions of process in the Health Department.

He said everyone had the right to be considered blameless in any matter, until an investigation proved otherwise.

"However, the appropriate process must be in place to deal with people expeditiously in cases such as this," he said.

"And importantly the process must not give rise to further concerns.

"It appears concerns have been raised with the process and timing in this matter.

"The minister, Ms Giddings, has the opportunity to calm the concerns of staff close to the matter and I urge her to do that."

Fonts and Colours

2007-01-03T17:11:00.000+09:00

Trying to make the blog easier to read - bigger fonts, contrasting colours, etc. Please let me know if you are finding it difficult to read for any reason, I'm still fiddling around with it all.

"Invisible Lives" - an older piece of writing

2007-01-03T15:37:00.000+09:00

[Slightly edited from its original form to reduce occasional incoherence and increase readability - I had only just started getting things down on paper about disability at that time, and was still very new to the social model of disability and to the idea that what I was feeling about my life and my disability wasn't just peculiar to me, and that the difficulties I had faced all my life weren't my fault. So, baby-activism!]

INVISIBLE LIVES
Copyright 2000

Imagine having to justify your existence every day of your life. Imagine having to prove your intelligence to every one you encounter, even your own family. And imagine that intelligence being diminished, ignored and overridden by those whose only superiority to you is their ability to control the movement of their bodies. Imagine that complete strangers feel they have the right to stop you on the street and ask for the most personal details of your life. Imagine that people who have never met you or spent even five minutes in your company think that they have the right to determine whether or not your life is worth living. Imagine that, if you try and protest against this treatment, others have the right to declare you `hysterical' or `over-emotional', and ignore you, laugh at you, or worst of all; sedate you, pronounce you insane and lock you away. Imagine that at the same time as all this is unwanted attention is being forced on you because of your supposed `defects', who you really are is being rendered invisible.

When you have finished imagining this, and have thanked whatever higher power you believe in that this treatment is not YOUR lot in life, I ask you to consider the fact that this is what those of us who are disabled have to endure every single day of our lives.

We are made invisible by the same attitude that makes us public property. By the assumption that our physical and mental disabilities make us less than human, turn us into things for people to stare at and question with impunity, with no fear of reprisal. We are exposed to the prurient gaze of the well meaning public, stripped of all of the basic rights to privacy, our dignity and pride are ripped away, leaving us with only fear and shame, the most cannibalistic of emotions. When we are seen only for our differences, and the difficulties they cause; our humanity and realities are denied, we are not seen as people to love, respect and include, but as freaks, something to be fixed or shoved out of sight.

We are invisible people, for as long as we are only seen as stereotypes and objects of pity, and not seen for who we really are, we are not being seen. We live in a world that tells us constantly we are expendable, the most expendable of any marginalized group in the world. There is not one part of life where we are accepted - with the exception of the charity industry. We are invisible. And we are only allowed to be visible when we try to be `normal', and deny our disability.

Many of us are trapped in an unending exile, and the only help we are offered is insulting and facile. The assumption is that it is somehow the disabled person's fault, that we have to get out more, be more outgoing, be willing to make the first move/break the ice/make people feel more comfortable. Our isolation is blamed on the disability, and the supposed personality defects that go with it. No consideration is given to the view that perhaps any `personality defects' are not part of the disability itself, but the logical and tragic result of being treated as something less than human, that is not worthy of the same respect as someone without disabilities. Or to the idea that it may be that people who reject us, are doing so for no other reason than that we look and act a little different to them.

We are invisible because what is done to us, is hidden, out of sight, trapped under piles of words, excuses, reasons and rationalizations. We are invisible because what is done to us is not seen, and because what is done to us is not quantified and cannot be physically proven. Because it is so easy to say that something that is the result of mistreatment, is really a symptom of the disability.
We are invisible because all the best bits of who we are, and all the things that mean most about our lives, are not the things that are obvious, that can be seen at first glance, they cannot be laid out like a resume, and cannot be properly be put into words.

We are invisible because people refuse to see us, not because we do not exist. People are scared of us because they see in us what can happen to them. They try and make us disappear, so they do not have to be aware of our realities. We are the scapegoats, we carry their fear, we absorb it for them, so they don't have to think about it, so they do not have to feel, so they do not have to be crushed by it.

The invisibility that we suffer from is far more crippling than any disability, and more infectious than any disease. But there is a solution. It requires that you have the courage to acknowledge the fact that our disabilities should not separate us from the rest of society. You need to be able to acknowledge the fact that it is your weaknesses and inability to see us as human, that causes us the greatest pain, and not our disabilities. And it requires that you develop the insight to see as who we really are and and for what we can become.

Testing Email Blogging

2007-01-01T20:12:00.000+09:00

Okay, Blogger seems to provide a way to post to one's blog via email, so
here I am, testing it out. It would be good to also have a stand alone
blogger client as well, but I'm not sure how the ones that I've come
across so far will work with the new Blogger setup. It's really hard to
find information about blogging clients on the Blogger website. Is it
possible I'm missing something obvious?

Blogger Software for Linux?

2007-01-01T18:29:00.000+09:00

Does anyone know of any software/addons for posting to Blogger for those of us using Linux?

I'm slowly adding to my blogroll on the right. There are so many great blogs out there, follow the links and you won't be disappointed. I will continue adding blogs as I find them, so keep checking back. It's all a bit hit and miss, I keep following links down the rabbit hole and forgetting or losing links to blogs that I want to link to. If you know of any blogs you think I've missed or that I should be aware of, please let me know. At this stage I'm focusing on disability, feminism, abuse and writing/literature, as these are my main interests and preferred writing topics.

Planning on getting my scooter taken in for an overhaul and battery change, so I will be stuck at home for the next week or so. I'm working on a post for the next Carnival of Feminists, and hope to get some other new things written as well.

A Whole Other Universe

2007-01-01T18:02:00.000+09:00

I'm not sure where this piece originally came from, but it does a great job in highlighting the differences between `normal' life and the lives of people with disabilities. Differences that really have nothing to do with our disabilities and everything to do with people's attitudes to our disabilities. This is what happens when people are dehumanised and have little control over their daily lives. This is what it is to be `othered'. Any `tragedy' in our lives comes from this, not from the disability itself.

“You and I”

I am a resident. You reside.
I am admitted. You move in.
I am aggressive. You are assertive.
I have behavior problems. You are rude.
I am non-compliant. You don’t like being told what to do.

When I ask you out for dinner, it’s an outing. When you ask someone out, its a date.

I don’t know how many people have read the progress notes people write about me. I don’t even know what is in there. You didn’t speak to your best friend for a month after they read your journal.

I make mistakes during my check-writing program. Someday I might get a bank account. You forgot to record some withdrawls from your account. The bank called to remind you.

I wanted to talk with the nice looking person behind us at the grocery store. I was told that it was inappropriate to talk to strangers. You met your spouse in the produce department. They couldn’t find the bean sprouts.

I celebrated my birthday yesterday with five other residents and two staff members. I hope my family sends a card. Your family threw you a surprise party. Your brother couldn’t make it from out of state. It sounded wonderful.

My case manager sends a report every month to my guardian. It says everything I did wrong and some things I did right. You are still mad at your sister for calling your mom after you got that speeding ticket.

I am on a special diet because I am five pounds over my ideal body weight. Your doctor gave up telling you. I am learning household skills. You hate housework. I am learning leisure skills. Your shirt says you are a “couch potato.”

After I do my budget program tonight, I might get to go to McDonald’s if I have enough money. You were glad the new French restaurant took your charge card.

My Case Manager, Psychologist, R.N., Occupational Therapist, Physical Therapist, Nutritionist and house staff set goals for me for the next year. You haven’t decided what you want out of life.

Someday I will be discharged - maybe. You will move onward and upward!

-- By Elaine Popovich

And this is my comment/addition to it:

Yes. Yes. Fucking damn it. And then people have the bloody nerve to assume that our depressions, our breakdowns, our bitterness is a result of our disability.

I have hydrotherapy, and can only use hospital pools. You go swimming, and can use whatever pool you want to - and can choose the one with your desired gender to admire.

I have respite care (and am someone that others need to have respite from), you have holidays, and can choose where to go, and earn enough to have that choice.

I have recreation options, you have hobbies, passions, activities you choose to do.

I have to justify my existence to every badly behaved troglodyte who thinks they have the right to ask me what is ‘wrong’ with me, you have your privacy that you can take for granted.

I have to be aware of all of this every damn day, you take your dignity for granted, and don’t have to be aware that not everyone can do so.

Staying Sane In The Silly Season

2006-12-25T16:53:00.000+09:00

Body Impolitic’s Guide to Sane Holidays has some excellent advice for those of us who find this time of the year difficult, including:

"7) If the holidays make you sad, or you just hate them, that’s fine. They’ll be over soon."

Something that I'm trying to keep in mind, just get through Christmas and New Years, and it'll all be over... until next year.

"For two women shot to death in Brookline, Massachusetts"

2006-12-25T16:34:00.000+09:00

I just came across this poem today, and found it too powerful not to share.

"For two women shot to death in Brookline, Massachusetts"
by Marge Piercy

How dare a woman choose?
Choose to be pregnant
choose to be childless
choose to be lesbian
choose to have two lovers or none
choose to abort
choose to live alone
choose to walk alone
at night
choose to come and to go
without permission
without leave
without a man.

Consider a woman's blood
spilled on a desk,
pooled on an office floor,
an ordinary morning at work,
an ordinary morning of helping
other women choose
to be or not to be
pregnant.

A woman young and smiling
sitting at a desk
trying to put other women at ease
now bleeds from five
large wounds, bleeding
from her organs bleeding out her life.

A young man is angry at women
women who say no
women who say maybe and mean no
women who won't
women who do and they shouldn't.
If they are pregnant they are bad
because that proves
they did it with someone,
they did it
and should die.

A man gets angry with a woman
who decides to leave him
who decides to walk off
who decides to walk
who decides.

Women are not real to such men.
They should behave as meat.
Such men drag them into the
woods and stab them
climb in their windows and rape them
such men shoot them in kitchens
such men strangle them in
bed such men lie in wait
and ambush them in parking lots
such men walk into a clinic
and kill the first woman they see.

In harm's way:
meaning in the way of a man
who is tasting his anger
like rare steak.
A daily ordinary courage
doing what has to be done
every morning, every afternoon
doing it over and over
because it is needed
put them in harm's way.

Two women dying
because a man chose that they die.
Two women dying
because they did their job
helping other women survive.
Two women dead
from the stupidity of an ex altar boy
who saw himself
as a fetus
who pumped his sullen fury
automatically
into the woman in front of him
twice, and intended more.

Stand up now and say No More.
Stand up now and say We will not
be ruled by crazies and killers,
by shotguns and bombs and acid.
We will not dwell in the caves of fear.
We will make each other strong.
We will make each other safe.
There is no other monument.

29th Carnival of Feminists

2006-12-21T19:20:00.000+09:00

Check out the imponderabilia of actual life: 29th Carnival of Feminists for dozens of fantastic posts on feminism and gender issues.

This is how it began...

2006-12-21T01:00:00.000+09:00

[I wish I could say that I now no longer have to live with the isolation that I described in this piece, the isolation that I felt when I wrote it, but that would be a lie.]

"THE INCUBATOR"

Copyright 2001

There is a connection between the loneliness I feel now and what I must have felt as a baby in the incubator. I realized that newborn babies have no sense of time whatsoever. Three days must have seemed like three lifetimes and then some. With no awareness of the events that break up time, that separate day from night, hour from minute. No knowledge that care continues. Each feed the first and last, each brief physical contact the only one in a lifetime. And always the desperate aloneness that stretches for eternity, the panic that there is something that I desperately need, that I cannot put into words and ask for. And now I know that because I never had it then, now I can never really have it at all. So the loneliness that I feel now echoes what I felt them, and seems to stretch beyond time, and will never end. But I don't know how it is possible that I have survived this, what I went through when I was younger, and what I am still enduring. I don't think that any human being should have to go through life feeling this fundamental lack, this emptiness.

Enclosed in a bubble like a bug caught in amber, trapped and at the mercy of those whose power far outweighed mine. They had the power over life and death, survival and ..... The only power I had was that of resistance. I could resist their insistence on my lack of value, resist their doom laden proclamations of a worthless life, nothing more than a vegetable (and I always wanted to know - what kind of a vegetable? Carrot, cauliflower, cabbage - what?), and fated to be inferior in thought, feeling, movement. I resisted their expectations that I would lie placid and accepting of whatever they did to me. Scooting endlessly up and down, up and down, testing out the confines of this plastic bubble they condemned me to. I pulled out the wires and needles attached to me, these insulting non-human things that were meant to help me live. I knew I could live without those substitutes for reality. They say that the nurses could never keep a nappy on me, I moved around so much. So I crawled up and down endlessly through my own shit, the only thing in the silence that was me, that was real and human, and didn't beep and hum and pour chemicals into me. I was the one who was in control and I showed it. The nurses nicknamed me `the little abortion'. Three months too early, and very inconvenient.

More on Touch

2006-12-17T22:25:00.000+09:00

Imfunnytoo wrote this wonderful, powerful, painful post as a response to "A Touchy Subject". This is the one context where I'm happy to be an `inspiration'. I'm not at all happy that so many of us have variations on these experiences, though. Society has a lot to answer for.

A Touchy Subject

2006-12-15T12:44:00.000+09:00

[Originally written on 10 December 2005]

A few things I've read on the internet today have reminded me of something I've been meaning to write about, but avoiding. Avoiding for years. I think it is time to write about it, but I don't know if I've got the time to go into it tonight

Touch. The lack of. Touch hunger, tactile deprivation, touch starvation.

As with anything, I write about this from my own personal experience, but I know it affects others (and of course, not just people with disabilities), too. It's another one of those subjects, the dance-around-it subjects, the if-we-ignore-it-it-will-go-away subjects.

I don't suffer from my disability - I never use that word in that context, that's something that others assume of me, but I do suffer from some things, I suffer from people's attitudes, I have suffered greatly as a result of my family's abuse of me, and their tacit approval of others who abused and assaulted me. I also suffer from touch starvation.

Living with a disability is to live a life full of contradictions, and this is one of the biggies. On one hand, you are touched a lot - especially as a child - docters and nurses poking and prodding and pulling at you, physiotherapists torturing... ahem, sorry, giving you physiotherapy, family and carers helping you walk, climb stairs, get up out of chairs, up off the ground, etc.

On the other hand - unless you are lucky enough to have family and friends who can think past the prejudices and assumption, and some people with disabilities are that lucky - you learn from an early age that you are essentially untouchable. People shy away from you, literally - I've had people physically recoil from me. We are seen as repulsive, objects of pity, asexual, less than human. Unclean. Some of us can go for months, years (years is probably an exaggeration - even in my case, but oh, it feels that long, sometimes) without affectionate touch from another human being.

OK. This appears to be all I can write at the moment. I have difficulty with this, not because I'm embarrassed about it, but because it is one of the most painful realities in my life.

Here is one of my favourite quotes relating to this whole topic, although I wasn't referring specifically to sexual touch writing the above, it is on the agenda, though. The article the quote comes from is excellent.

"Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." - Anne Finger http://www.newint.org/issue233/fruit.htm

I will write more on this, soon, eventually.

[And I did, surprisingly, on 5 February 2006]

My Skin - A Touchy Subject - Part 2

My skin has shrunk into itself
after almost 32 years of not being touched
except to remind me of how untouchable it is
and to remind me of its gaping flaws and wounds that people will fall into
if they come near me
The pain of this leaves me two seconds away from dying
every day

Years of physiotherapy - being pushedpulledstretched
into painful awareness that my body is worthless as it is
So it must be tortured into normal
It didn’t work
I never became normal (Thank God!)
but I tuned out my body
so I didn’t feel the pain

Only time my parents touched me was for exercises that hurt so much I wanted to cry and scream - but I was too scared to.
Huge adults leaning over me shoving my legs into shapes they weren’t designed for, folding up my legs and leaning on them with their full 6 foot basketball/rugby/sports playing weight
Yelling at me when I refused to do the exercises - lazy, lazy, lazy...

Cold eyes staring at me when I came home crying - pushed down steps, tripped up, punched
Sharp words slicing, blaming, condemning
All I wanted was a hug, to feel safe, wanted
Comforted (I can’t say, think or write this word without crying)

“You can’t be in pain, I can’t feel anything”, said my father, smile locked into place with mocking laughter
“Growing pains”, said the doctor - I didn’t know what muscle spasms were until I was well into my twenties
No one told me that they were a normal - but painful - part of spastic CP - not the doctors, physios.
Did they even know?

Psoriasis came when I was sixteen
My skin growing extra layers of hardness
Layers that my heart had not yet developed
Leaving me still hopeful that I would be touched
with gentleness, affection
and for no other reason than to give joy
and comfort
and pleasure

Occasional glimpses of what could be, what I could have
Relationships over before they really began
With men who I couldn’t have stayed with, even if they hadn’t left first
I am glad they left
But I learned why I had a body
And that if I could enjoy sex (and how I did!) then my body was fine, practically perfect
Unfortunately, this is one of the few things I like best when there is another person
I love sex
But I can’t be casual about it
And now only want it with someone I love
and who loves me (Woody Allen notwithstanding!)

My tears dry up before they fall
pulled back inside myself
by a heart that has become a desert
deserted

Words are the poorest substitute for a touch given with awareness
but they are all I have
And, no, a massage wouldn’t help, getting a pet wouldn’t help (I am poor, I can barely afford to feed myself)
The emptiness is too overwhelming
I want someone to look after me for once
And how do I talk about the fact that sometimes, if you have a disability, you don’t get looked after (there is this odd belief that all people with disabilities have someone to look after them - perpetuated by people who don’t know anyone with a disability) - no one ever believes me
It’s true, even if you don’t believe me
Sometimes you get nothing, not even the basics
Cruelty and neglect are equal opportunity - they do not discriminate

Nobody wants to hear any of this
I don’t want to hear any of this
But it is my life
Right now
Today
But please
Not tomorrow

This isn’t a poem, this is the only way I can write about this.

Travelling With A Disability

2006-12-15T12:32:00.000+09:00

The Fifth Disability Blog Carnival is now up at Planet Of The Blind. Lots of great posts on people's experiences of travel and disability along with some general disability posts - including one of mine! Go and have a read of what is there, it's all great stuff.

A Rant On "Help"

2006-12-11T11:04:00.000+09:00

[Originally written on 26 September 2005]

This short - and incomplete - rant was prompted by several recent encounters and discussions. This poem was also one of the prompts for this rant.

Humans helping other humans is part of the social contract we should all be participating in, but I object to people who insist on `helping' me when I clearly don't need help, simply because they assume that having cerebral palsy makes me incompetent, and because they want to feel better about themselves.

You can tell the difference, if the people offering help see you as a fellow human being, they will *ask* first, and listen to the answer, and when you say, politely "Thanks for the offer, but I'm fine, I can manage", they won't take offence. And if you say, yes, thanks I could do with some assistance, they do whatever it is calmly, maturely, and if it actually involves physical contact with me or my assistive devices they *listen* to me when I say this is the best/easiest/least painful way of doing it. And they are happy with a simple "Thanks very much, really appreciate the assistance, have a great day" or other appropriate response. Help from those people is a pleasure.

If the people offering have some idea of themselves as `ministering angel', 'helping the unfortunate cripple', then they just barrel in, grab, push, whatever without asking - which can be dangerous, and if they do ask, and you refuse - politely (I stress that - because I'm always polite the first time, unless I'm physically grabbed without warning, then I scream bloody murder with *no* apology), they get sooooo offended - how *dare* I not let them help me, never mind that sometimes I'm just sitting there, and there is literally *nothing* they can help me with, even if I *wanted* to let them help me. I was sitting in the mall one day, in my scooter, enjoying the sunshine, reading a book - guy comes up to me out of nowhere "Can I help you?", Me, very puzzled thinks, help me with what? I'm not *doing* anything, do you want to turn a page for me?. "Um, no thanks."

We have the same right of refusal of assistance than any able-bodied person does. And it's the attitude of the person offering, I'm a human being, not some mindless cipher for someone else to project their fears and assumptions onto.

I also don't much like "help" from people who cannot understand that I'm also someone who can provide others with assistance when I can. It's the one-sidedness that galls, the assumption that I am not also a contributing functioning member of society in my own way.

But I feel censored a lot of the time, about this sort of thing by both able-bodied and disabled people, and get berated and attacked (who would have though expecting people to treat you like a human being would result in such attacks!) by some as well who tell me I'm `ungrateful'.

I will not coddle or patronise able bodied adults by assuming that they can't treat people with disabilities like human beings. They need to think about how they treat `Others', and I expect them to behave like the adults they are and *think* about their attitudes. Just as I do when I'm in a new situation or around people I'm not familiar with.

It's not rocket science.

UN International Day of Elimination of Violence Against Women - White Ribbon Day

2006-12-11T10:54:00.000+09:00

[Originally put together on 25 November 2005]

"White Ribbon Day was created in 1991 on the second anniversary of one man's massacre of 14 women in Montreal, by a handful of Canadian men who began the White Ribbon campaign to urge men to speak out against violence against women.

Did you know... Worldwide, 1 in 3 women experience some form of violence.

In Australia - 57% of women have been subjected to violence during their lives.
- Domestic violence contributes to more ill-health and premature death than any other single cause for women aged 15-44.

Internationally - Women are the highest proportion of the adult civilian population killed in war, and targeted for abuse.
- Women and children make up the majority of refugees and internally displaced people forced to flee their homes due to armed conflict.
- Rape is used as a weapon of war and a method of intimidation by military and other conflict groups.

http://www.amnesty.org.au/16days

Wearing a white ribbon is a personal pledge to not commit, condone nor remain silent about violence against women and children."

[The above was taken from publicity for an event for this year's Day - there aren't any cites for the stats on the publicity and I'm still trying to load up the Amnesty International Australia page to check]

The following is a speech I made at a public event held on last year's Day.

VIOLENCE AND WOMEN WITH DISABILITIES
Talk for International Day for the Elimination of Violence Against Women – 25 November 2004

`Whether we speak or not,
The machine will crush us to bits--
and we will also be afraid

Your silence
will not
protect you'

- Audre Lourde

A 13 year old girl is repeatedly threatened by her classmates. "After school we are going to get you behind the bike sheds and you're dead, we're going to kill you." As she walks through the halls at school, boys run past her and hit her on the shoulders and back, hard. These same boys push her down high flights of steps. And it's not just the boys, the girls too have their own form of assault. They use words, silence, subtle innuendo. The teachers do nothing. She lives in a constant state of fear, not knowing when the next blow will fall, where the next insult will come from. At home there is no reprieve. She is still not safe. She tells her mother what happens at school. Her mother tells her "They pick on you because you are obnoxious." She has nightmares, several times a week she wakes up screaming, she is trapped, and no one is there to help her or protect her. There is no escape.

This is a true story. But not one hundred percent true, I've left out one thing. The girl in the story has cerebral palsy. She can walk, but with difficulty, and she often trips and falls. She cannot run away from her attackers. She is at their mercy, and they don't have much of that.

When I wrote this talk, the hardest part was not deciding what to talk about, but deciding what to leave out. I have so many stories like this one, the details are all different. But they are all true and I lived though them, barely.

I grew up in a family that verbally and emotionally abused me because they couldn't cope with my disability. I was constantly criticized and insulted. My parents bullied and intimidated me, yelling at me when I fell over or was unable to keep up with them. They refused to help me when I needed it, and didn't even give me the basic love and care that all human beings need and should have. As far as they were concerned I was defective, broken, something to be ashamed of. And I believed them. I had no choice. There was no one around to tell me any differently.

I have suffered from severe clinical depression since the age of seven and first thought of suicide at the age of 12. The pain of living with what had been done to me and the loneliness and isolation was so unbearable that 8 years ago I ended up in hospital twice in 6 months after overdosing on pills. After the first suicide attempt I went to my parents place for the weekend. My depression meant that I hadn't been eating properly for months and had lost a dangerous amount of weight and was weak and shaky, I was also suffering from severe insomnia. The first night at my parents I was unable to get to sleep until 4 am. I was woken up at 8 am, and was given a list of household chores to do, including vacuuming the whole house. Apparently, according to them, I was depressed because I didn't have enough to do. My family have always refused to see or admit that there is anything wrong with the way that they treated me. The abuse continued until I was 27 years old, when I finally cut off all contact with them. I have suffered from nightmares several times a week for twenty years. The week after I spoke to my mother for the last time, the nightmares stopped.

Violence against women with disabilities is a taboo subject, most people don't want to know that we are mistreated and abused. I can't count the amount of times people have said to me, "But your family wouldn't treat you like that, no one would abuse a child with a disability, your parents must love you." It has been very hard to argue with those responses. I didn't, and still don't, want to acknowledge that I was treated the way that I was. I want to believe that I have a family that loves me, that sees me as a valuable person and someone worth protecting. But I don't. I've only just realized in the last few weeks - that if you love someone, you don't deliberately mistreat them, and you don't stand by and let others treat them badly.

We live in a world where people with disabilities are seen as objects. Objects of pity, objects of fear. You don't have to treat an object with respect, you can do whatever you like to it and no one will stop you. One of the most difficult things to cope with as a person with a disability is the fact that many non-disabled people only see the disability when they look at you. As a result you unwittingly become public property. It is very common when you have a disability to be accosted in the street by complete strangers who demand to know "what is wrong with you", and expect you to drop whatever you are doing to give them an answer. I've been asked - with no warning at all - such questions as "So, what have you done to yourself then?", "How long have you been confined to that" - indicating my scooter, and "What's wrong with you, you don't look sick". I've had a number of people come up to me over the years and tell me "Oh, I think you are so brave, if I was like you I would kill myself". There are many stereotypes about women with disabilities. Stereotypes that paint us as weak, dependent, asexual, incompetent, unattractive, and drains on the economy. We are none of these things. Neither are we tragic heroines overcoming our disabilities, or particularly brave or inspirational. We are simply human beings, living our lives, as flawed and imperfect and as real as anyone else. Unfortunately many people still mistake the stereotypes for actual facts and this leaves us vulnerable to violence, neglect and abuse.

People often say to me that they don't know how to behave around people with disabilities, they don't know what to or how to act. This is often used as an excuse or reason for our mistreatment. There is no excuse. Any form of violence directed towards women with disabilities is unacceptable. We should not have to live in fear.

There is very little research on violence and women with disabilities. The research that has been done exposes a terrifying reality. Women with disabilities are more than four times as likely to be assaulted as other women. We are significantly more likely to experience emotional and sexual abuse than able-bodied women, with the abuse lasting for longer periods of time. As many as 83% of women with developmental disabilities have been sexually abused. At least 85% of women with disabilities have experienced domestic violence.

For the last 18 months I have been organizing monthly forums for women with disabilities. We have speakers on a wide variety of topics that are relevant to our lives. The forums are a place where we can get together and share information and experiences, meet others who have gone through the same things. Too many of us have been victims of abuse, subjected to violence at the hands of our families, our partners, our caregivers and strangers. In September our group received funding to run a self defence course specifically for women with disabilities. Every one of the women attending the course had been subjected to some form of violence or abuse, at least once in their lives, either at home or out in the community. The self defence techniques we learned have meant that we all feel more able to defend ourselves if we are attacked. It is essential that women with disabilities have the chance to learn how to protect themselves and I hope to get funding to run this course at least once a year.

Speaking up about such a controversial subject as this one is not easy, but it is the only way to stop the violence and start making changes in the way women with disabilities are treated. It is agonizing to be up here and tell you the things I have today, but I can't, and I won't, keep silent about them. I don't want anyone else to go through the hell I went through, the hell I know too many other women with disabilities have been through. It never goes away. Even when you have control over your life and are no longer in danger, the scars remain, the memories never entirely leave you. Apparently adversity and suffering develop character, or so people keep telling me. Trust me, nobody needs this much character.

There are three things that I'd like to say to anyone who recognized themselves in what I've been talking about, any woman with a disability who has experienced any kind of violence or abuse:

It is never your fault, you do NOT deserve to be treated like this.

Don't keep silent about what is happening, tell someone you trust. If they don't believe you, keep trying until you find someone who does.

You are not alone, there are people out there who do care, who will help you. They may be hard to find, but keep going until you do.

And one last thing to everyone here today, the most important thing. Please remember, we are not only our disabilities. We are more than statistics. We are your daughters, your sisters, your mothers, your wives, your friends and coworkers. We are women.

©November 2004

To be... disabled, Or not to be... disabled

2006-12-11T00:15:00.000+09:00

[Originally written on 10 September 2005]

On people saying, ”I don’t think of you/myself as disabled“ and/or ”Disability is all in your mind“

At this point in my life I have no problem in identifying myself as ‘disabled’. I have cerebral palsy and there *are* things I can’t do, or have great difficulty with. These things do need to be acknowledged, or else I’m at risk of pushing/being pushed past my limits, and causing a great deal of damage. I used to be around a lot of people who would say ‘I don’t see you as being disabled’, and would use that as a reason to deny me the very real assistance I needed, and at the same time they would contradict themselves by obviously treating me as ‘less than’ and ‘inferior’, and continually make a big deal of my disability (??!!) - the one they didn’t see me as having! As a result I was very screwed up for the first 20 or so years of my life. Felt like I was weak, not really disabled, faking it (I have *cerebral palsy*, I was *born* with it for fuck's sake! But that’s the damage those attitudes caused), and pushed myself to an insane point, damaging both my body and my psyche.

Anyway, for the last five years I’ve ‘come out’ to myself and society about being disabled - and doing so much better. Achieving much more than I thought I could, and taking care of myself better. Ironically, the able-bodied people I’m around now don’t come out with the ‘I don’t think of you as disabled’ line, they acknowledge my disability, and value me because of everything I am, including the knowledge I have from living with a disability 24/7. They will discuss things with me, and allow for my limitations, and treat me with far more respect than those who tried to pretend it wasn’t there.

For me, it’s about seeing reality, and being seen as disabled is only a bad thing for me if I buy into the bullshit that being disabled means I’m inferior. It doesn’t mean that at all. I would no sooner say I didn’t see myself as disabled, as I would say I don’t see myself as female or white, or blue eyed. It is part of my reality, and for me denying that reality is far more damaging than the disability itself or even society’s discrimination.

It’s also about fighting against the current trend for papering over the cracks - for making everything seem ‘nice’, and ‘positive’, so that people don’t have to think and feel, especially about the difficult and the painful parts of life. A colossal and ultimately dangerous form of denial. Plastic surgery for the mind, soul and heart.

A lifetime of being surrounded by this does so much damage, and I have found myself rebelling, at last.

Feminism and Women with Disabilities - Resources

2006-12-10T17:13:00.000+09:00

This is a list of resources I’ve put together on feminism and women with disabilities. The list is about a year or so old, and new books have come out since, plus I’ve run across others that should be on the list. So it’s not comprehensive by any means, but a start, at least, for anyone interested in issues relating to women and disability. Any suggestions on what else should be on the list are welcome.

Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities - Judi Rogers and Molleen Matsumura, eds.

Women with Disabilities: Essays in Psychology, Culture and Politics - Michelle Fine and Adrienne Asch, eds.

With the Power of Each Breath: A Disabled Women’s Anthology - Susan E Browne, Debra Connors, and Nanci Stern, eds.

Mustn’t Grumble: Writing by Disabled Women - Lois Keith, ed.

Encounters with Strangers: Feminism and Disability - Jenny Morris, ed.

Past Due: A Story of Disability, Pregnancy and Birth
Elegy for a Disease - Anne Finger

Voices From The Shadows: Women With Disabilities Speak Out - Gwyneth Ferguson Matthews

Claiming Disability: Knowledge and Identity
My Body Politic: A Memoir - Simi Linton

Living Outside Inside: A Disabled Women’s Experience - Susan Hannaford

Different But The Same: Young people talk about living with serious illness - Heather Cameron (Australian)

The Rejected Body: Feminist Philosophical Reflections on Disability - Susan Wendell

Women With Disabilities: Found Voices - Mary Wilmuth and Lillian Holcomb, eds.

Exile and Pride: Disability, Queerness and Liberation - Eli Clare

Restricted Access: Lesbians on Disability - Victoria A Brownworth & Susan Raffo, eds.

With Wings: An anthology of literature by women with disabilities - Marsha Saxton & Florence Howe, eds.

Carnal Acts: Essays
Remembering the Bone House: An erotics of place and space
Waist-High in the World: A Life Among the Nondisabled
Ordinary Time: Cycles in Marriage, Faith and Renewal
Voice Lessons: On Becoming a (Woman) Writer
Plaintext: Essays - Nancy Mairs

Oyster Grit: Experiences of Women With Disabilities - Victorian Women With Disabilities Network (Australian)

Pride Against Prejudice: Transforming Attitudes to Disability - Jenny Morris

Lives Worth Living: Women’s Experiences Of Chronic Illness - Veronica Marris

The Sexual Politics of Disability: Untold Desires - Tom Shakespeare, Kath Gillespie-Sells & Dominic Davies, eds.

Too Late to Die Young: Nearly True Tales from a Life - Harriet McBryde Johnson

Female Forms: Experiencing and Understanding Disability - Carol Thomas

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being - Danuta M Krotoski, Margaret A Nosek & Margaret A Turk

Webpages

Health information for girls and women with a disability

Women With Disabilities Australia

Disability Studies and Feminism Online Magazine

Disability Cool: Sexuality R Us - info on sex and relationships for
women with a disability
Disability World Magazine - Up to date info on disability issues
around the world - specific section for women’s issues

Crip Commentary - Laura Hershey’s homepage

Abuse and women with disabilities

Disability Blog Carnivals 1-4 plus 5

2006-12-10T16:24:00.000+09:00

Over the last few months several blog carnivals have been run on different topics with a disability perspective. There are a lot of fantastic disability blogs entries on many issues. Take some time to have a read.

1. Courtesy of Disability Studies, Temple U.

2. "The Cure"

3. Perspectives on Spirituality

4. Different Ways of Going about Things

The fifth disability blog carnival will be up at Planet of the Blind on 14 December. The theme for this carnival will be "Traveling with a Disability: The Good, the Bad, and the Ugly."

Talking About Women with Disabilities

2006-12-10T15:45:00.000+09:00

This is the text (identifying names deleted for my paranoia... ahem, privacy) of a talk I gave about the issues that many women with disabilities face and what I am doing about these issues via a group and forums I coordinate, to a women’s committee that I’m on. It was written in 2004 the night before the presentation - I would change a few things now.

“There are many issues and concerns that affect women with disabilities, some of the more obvious ones include; poverty, finding employment, accessible housing, health care, sexuality, domestic violence, accessing education, and dealing with a physical environment that is still largely inaccessible. I imagine that many of you already have some awareness of these issues. They are very important, and affect our lives on a daily basis. But I’m not going to talk about any of those things in great detail today. Instead, I’d like to talk about a few of the less tangible challenges we face, along with the ways I hope the forums will address and provide possible solutions to them. I’d also like to give you some idea of the many ways that women with disabilities can contribute and are contributing now to the world.

One of the most difficult things to cope with as a person with a disability is the fact that many non-disabled people only see the disability when they look at you. As a result you unwittingly become public property. It is very common when you have a disability to be accosted in the street by complete strangers who demand to know ”what is wrong with you“, and expect you to drop whatever you are doing to give them an answer. I’ve been asked - with no warning at all - such questions as ”So, what have you done to yourself then?“, ”How long have you been confined to that“ - indicating my scooter, and ”What’s wrong with you, you don’t look sick“. I’ve had a number of people come up to me over the years and tell me ”Oh, I think you are so brave, if I was like you I would kill myself“. A very disturbing thing to hear when you are simply out and about minding your own business.

Women with disabilities are not seen and valued as women. The mainstream view of beauty does not allow for spastic or amputated limbs, scarred bodies or bodies that have limited movement. It doesn’t allow for slow or slurred speech. It doesn’t allow for anything but the most limited ideas of beauty - something that as we all know affects non-disabled women as well - but it can be very difficult when you have no chance of living up to even the broadest definition of normal. And we still live in a world where a woman’s value is often defined by her looks. It is still a fight for a woman with a disability to be seen as intelligent and capable of looking after herself and others. Our sexuality is denied, and many in the community and the medical profession still doubt our ability to have and to raise children. It is harder to form relationships and friendships - we are still seen by some people as burdens and incapable of giving and receiving affection and support. However, some women with disabilities do manage to have these things in their lives. Unfortunately too many of us are unable to take these opportunities for granted. This must change.

The forums can provide us with an opportunity to acknowledge and celebrate our various roles in life and our innate value as women, not despite our disabilities, but with them, and all the other aspects of our lives.

In the forums we are sharing our experiences and learning that we are not alone. We celebrate who we are and what we can achieve, we acknowledge the painful and difficult aspects of our lives. The forums have covered and will cover many different topics relevant to women with disabilities, all of the issues I’ve already mentioned, along with many more. We will also be running the self defense course that we received funding for recently. Other plans include running more in-depth forums on things like sexuality, parenting with a disability and nutrition. I hope that we will be able to develop the forums into an sustainable organization for women with disabilities that is run by us. Women in the forums have put forward ideas that include a magazine that is run by women with disabilities and showcases all aspects of our lives, and a fashion show. These are just a couple of examples, there are and will be many more. One of my own plans for the future that is very close to my heart is to set up a mentoring program for women with disabilities to support and encourage younger women and teenage girls with disabilities. I hope in this way we can reduce the isolation that too many younger women and girls with disabilities suffer, and provide them with role models who can show them that they have the potential to become valuable and amazing women.

I’ve been asked to mention possible ways in which you all could provide assistance and support to help the forums keep running and become a sustainable and ongoing project.

Obviously, things like funding and other practical supports are necessary, but today I’d like to ask you all to go beyond that if you can. The support that all women with disabilities really need, is the awareness and acknowledgment that we are truly valued and respected as women, standing alongside all other women. Please get past the stereotypes that society and the media perpetrate, stereotypes that paint us as weak, dependent, asexual, incompetent, unattractive, and drains on the economy. We are none of these things. Neither are we tragic heroines overcoming our disabilities, or particularly brave or inspirational. We are simply human beings, living our lives, as flawed and imperfect and as real as anyone else.

Work with us in challenging and shattering these myths and prejudices that can make our lives so difficult. Come along and help out at the forums. Get to know us, learn about our lives, see the things we have in common with you. Who knows, you may even make new friends and professional connections. Like any group of people there is a variety of experiences, opinions and personalities among us. We don’t always agree with each other, but all of our viewpoints are valid, and we all deserve to be heard. Share what you learn about us with others, tell them that we are more than the sum of our disabilities, correct their misconceptions if you can.

I’m asking you to think about these things not just for our benefit, but also your own. Any of you could become disabled at some time, either through accident or disease, you may already have some form of invisible disability such as depression or joint or back problems. You may have family members or friends who are disabled. Wouldn’t it make life easier to know that having a disability is not a fate worse than death, to know that it is not something to fear, but something that can be lived with, and, with the support and knowledge of those of us who have gone before you, to know it is something that can be lived with well.”

Silences

2006-12-10T13:19:00.000+09:00

[Originally written on 24 July 2005]

I’m struggling at the moment with a few difficulties, all of which can be placed under the umbrella of not feeling able to speak out about really painful and unbearable realities that I’m faced with, and have been for most of my life. These issues are really important and I know there are so many other people faced with them who need to know that it’s not just them. I have wanted for a long time to do something to make sure that others don’t suffer in silence the pain that I went through.

It’s hard, though. I worry about not being believed, about being subjected to even more abuse from others who don’t want me to speak of what I know. It silences me - take this post for example, so fucking wishy-washy, dancing around the truth, or even definite statements.
[...]

I’ve started this post so late, so that I know I won’t have time to really write anything of substance before I have to get some sleep. Great self sabotage!!! So I will list the things I want to write about, and get back to them later.

My family couldn’t handle my disability, or any way of being that was different to their own. (Sexist, homophobic, and racist too. Real charmers.)

As a result, they neglected and abused me emotionally and physically.

When you are disabled, people don’t need to physically hit or attack you to abuse you - all they need to do is refuse to give you the necessary help and support. Ie. I have cerebral palsy, my balance is shit, walking up and down stairs and steps is fucking scary especially as I’m terrified of heights. My family refused to help me down stairs and steps (even ones without hand rails) when we were in public. Once they took pictures of me crawling backwards down a flight of steps, at age 13, in a skirt, on a very windy day, at a crowded tourist attractions. I was forced to resort to crawling because they refused to help me, they stood at the bottom, took pictures and laughed.

This is just one example from 20 years of consistant abuse, ignorance and denial of my needs - not just my needs as someone with a disability, but my needs as a human being. I cut off contact with them a few years back, and my life has improved by leaps and bounds. I had nightmares 3 or 4 times a week from age 7 to 27. The week after I told my mother that their treatment of me was unacceptable and I no longer wanted contact with them, my nightmares STOPPED, and I only have them once every couple of months.

I had to learn how to socialise with people as an adult. I had no idea that having conversations with people involved ‘back-and-forth’. I only knew how to bombard people with words as my family had done to me.

I have to live with the knowledge that, for all intents and purposes, I have no family. It is not safe, physically or emotionally for me to be around any of them.

This hurts.

To quote from one of my favourite tv shows “Sometimes my life sucks beyond the telling of it”

The CP is not the worst thing that has happened to me, not even close. Disability is a neutral thing, it is the prejudices of the rest of the world that make life hard.

I am SO FUCKING ANGRY at what has been done to me, at what has been done to others like me. There is of course more to my life and my story than what I have written here, and this is not me at my most coherent.

For many years my goal has been to write about these things, bring them out in the open - force the world to see what is being done to too many people with disabilities (note - these things do not happen to all pwd’s - I know many who have loving, supportive families. This is how I know that these other things that happened to me and many others are wrong.)

Sometimes it is hard to fight.

I just want to have a family that loves me. (Treacherous voices in my head tell me I am being whiny and self-absorbed. I know I am not, and I know there is a problem with that attitude of thinking that anyone who speaks of their pain and suffering from *their* perspective instead of hiding it neatly and tidily away is damned as whiny, self centred and many other ‘bad’ things.)

The pain does not get any easier.

The loss cuts deeper by the day, I cannot get used to this.

Who, What, Where, When...

2006-12-10T12:47:00.000+09:00

This is where I'll be reposting what I've written elsewhere in the past on disability, activism, abuse and life in general that is suitable for a more public viewing. You may have read some of these pieces before. There will hopefully be some newer writings along with links to articles, other relevant blogs and blog carnivals. Feel free to comment on and link to these posts.