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O M G....

May 26th, 2008 (05:15 pm)

http://news.ninemsn.com.au/article.aspx?id=569510

Beijing guide labels disabled ‘unsocial’

17:01 AEST Mon May 26 2008

1 hour 20 minutes ago


Disabled people can be unsocial, stubborn, controlling, defensive and have a strong sense of inferiority, according to an official Beijing Olympics guide set to spark outrage in the disabled community.

The Olympic manual for volunteers in Beijing is peppered with patronising comments, noting for example that physically disabled people are “often” mentally healthy.

Volunteers at the Olympics and Paralympics are instructed not to call Paralympians or disabled spectators “crippled” or “lame”, even if they are “just joking”.

The document, which indicates the Chinese hosts could use a swift education in political correctness, says the optically disabled “seldom show strong emotions”.

“Physically disabled people are often mentally healthy,” adds a copy of the guide, obtained by AAP.

“They show no differences in sensation, reaction, memorisation and thinking mechanism from other people, but they might have unusual personalities because of disfigurement and disability.

”For example, some physically disabled are isolated, unsocial, and introspective; they usually do not volunteer to contact people.

“They can be stubborn and controlling; they may be sensitive and struggle with trust issues.

”Sometimes they are overly protective of themselves, especially when they are called crippled or paralysed.“

Volunteers are instructed never to ”stare at their disfigurement“.

”A patronising or condescending attitude will be easily sensed by them, even for a brain damaged patient (though he cannot control his limbs, he is able to see and understand like other people).

“Like most, he can read your body language,” says the 2008 volunteer guide.

“Show respect when you talk with them.

”Do not use cripple or lame, even if you are just joking.

“Though life has handed many difficulties to them, disabled people are often independent and self-reliant.

”Volunteers should offer assistance on a basis of equality and mutual respect...

“Disabled people can be defensive and have a strong sense of inferiority.”

China’s treatment of the disabled has in the past angered swimming great Dawn Fraser, who cited it as one reason she won’t be going to Beijing.

She said in April she had seen disabled athletes spat on in the streets in Beijing during university games in the mid-1990s.

Volunteers at the Beijing Games are also given some very specific instructions on how to sit, stand, walk and talk properly.

A handshake should last from three to five seconds, the manual states, and the body and arm should form a 60 degree angle.

An “appropriate” personal space on social occasions is from 1.2 to 3.6 metres, but for work colleagues it is 1.2 to 2.1 metres, and 2.1 to 3.6 metres is good for strangers.

When sitting, volunteers are told to avoid hooking the chair with one foot (“low-class and boorish”), stretching out their legs (“rough”), crossing the legs in a “4” shape (“cocky and impolite”) and continually changing positions (“underbred”).

When standing, the guide warns against shaking any part of the body (“careless”), putting two hands in pockets (“frivolous”), crossing both arms (“defensive”), standing with two arms or one arm akimbo (“offensive”) and standing with two legs crossed (“too easygoing”).

It says taking steps too large or too small looks “strained”, though it does not specify how large the step should be.

The Olympics run from August 8-24, while the Paralympics follow from September 6-17.

...brain the size of a planet... [userpic]

New Book on Women and Chronic Illness

May 26th, 2008 (04:20 am)
awake

current mood: awake

[This came through on an email list and I meant to post it ages ago - buuuut, you know.... It’s a bit pricey, $36 US, but looks worth it if the budget allows. According to the info on the website, it looks like it may also be available in other formats as well.]

Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives
Edited by Diane Driedger & Michelle Owen

Spring 2008 9780889614642

This much-needed collection of original articles invites the reader to
examine the key issues in the lives of women with chronic illnesses. The
authors explore how society reacts to women with chronic illness and how
women living with chronic illness cope with the uncertainty of their bodies
in a society that desires certainty. Additionally, issues surrounding women
with chronic illness in the workplace and the impact of chronic illness on
women’s relationships are sensitively considered.


Distinctive Features:

§ Presents incisive research on the subject from the perspective of women
who themselves live with chronic illness both physical and mental.

§ Discusses the shame, blame, and power imbalances in the family, work,
and educational lives of women with chronic illness.

§ Provides an important dimension of personal experience that demonstrates
that barriers in the women’s lives are primarily socially constructed.



“This collection addresses an under-researched and under-theorized academic
topic, combining the perspectives of critical disability studies and
feminist studies. Most importantly, it does so from the perspective of
women who themselves live with chronic illness. The scholarship is sound
and well researched, but also adds an important dimension of personal
experience that underlines the value of critical identity politics.”

—Pauline Greenhill, Women’s and Gender Studies, University of Winnipeg

“This is a strong and much-needed collection about issues that are
significant in the lives of women living with chronic illnesses. I like the
inclusion of physical, cognitive, visible, invisible, and contested
illnesses.”

—Sharon Dale Stone, Department of Sociology, Lakehead University



Diane Driedger is a PhD candidate in the faculty of education, University
of Manitoba. She is author of The Last Civil Rights Movement: Disabled
Peoples’ International and co-editor of two anthologies by women with
disabilities; she is also a published poet. Since 1980, Diane has been an
activist, researcher, administrator and author on the topic of people with
disabilities with a specific interest in the empowerment of disabled women.



Michelle Owen is Associate Professor of Sociology at the University of
Winnipeg. Her primary teaching, research interests and publications are
focused on gender, sexuality, family and disability. Most recently,
Michelle worked on two projects involving women with disabilities: a
longitudinal study of intimate partner violence, and a participatory action
research initiative investigating intersecting sites of violence in the
lives of girls and young women.

Table of Contents

Part One: Clashing Expectations

Water Wearing on a Stone: The Role of Shame in the Social Construction of
Chronic Illnesses
Charlotte Caron

The Complexities of Negotiating Power under Conditions of Chronic Illness
Mary Delaney and Sandra Bell

Crazy Talk: Dialogue between Two Young Women about Depression
Mandy Fraser and Jennifer Matwee

The Social Construction of Doubt: Women’s Accounts of Uncertainty and
Chronic Illness
Sheilagh Grills and Scott Grills



Part Two: Unpredictable Bodies

The Emergence of Body Image Dissatisfaction among Women in Singapore
Maho Isono

What’s Eating You? A Feminist’s Chronic Struggle with Anorexic Identity
Morgan Gresham

Listening to the Body: Women with Chronic Fatigue Syndrome, Fibromyalgia,
and Multiple Chemical Sensitivities Talk about Illness and the Body
Debra A. Swoboda

This Is Not Going to Control My Life: Young and Living with Fibromyalgia
Amy Chow


Part Three: Disturbing Work

The Personal Is Pedagogical/The Pedagogical Is Personal
Ruth Roach Pierson

There Always Seems to Be Excuses: A Grad Student’s Narrative of Autoimmunity
Julie Devaney

A Delicate Balance: Chronic Conditions and Workspace
Nancy E. Hansen

Part Four: Shifting Relationships

Chronic Non-malignant Pain: A Queer Woman’s Journey through Relationships
and Healing
Corinne Stevens

Working Together: Women with Musculoskeletal Illnesses Interacting with
Health Care Providers
S. Michelle Driedger, Carrie Sanders, Cindy Gallois, Maree Boyle, and Nancy
Santesso

Circle of Care: Transitioning through One Woman’s Experience of Breast
Cancer
Barbara A. Brown


Part Five: Traversing Dissonance

Recovery and Power: Living with Bipolar Disorder
J. Karen Reynolds

Living Well (with Cancer): Lessons Learned from Dragon-Boat Racers
Terry L. Mitchell, Franci Finkelstein, Eleanor Nielsen, and Christine
Yakiwchuk

Signalling Invisibility, Risking Careers? Caucusing as an SOS
Katherine Teghtsoonian and Pamela Moss

Notes from Bed: Learning from Chronic Illness
Susan Wendell


Visit our website! www.womenspress.ca

...brain the size of a planet... [userpic]

The Sunday Salon - Starting Off

March 16th, 2008 (11:53 am)
busy

current mood: busy

This is the number one of at least two posts today for my first The Sunday Salon.com contribution. Contrary to my usual Sunday activities (sleep, read, fiddle around on computer, do as little as possible), I have to go out for a few hours this afternoon, but I thought I would post some information about the two books I will be reading this week, just to whet your literary whistles. Actually reading and posting my thoughts will happen later on tonight.

I’m currently reading “Good Wives?” by Margaret Forster and “The Morning Gift” by Eva Ibbotson.

Amazon.co.uk Review of “Good Wives?”
http://www.amazon.co.uk/Good-Wives-Fanny-Jennie-1845-2001/dp/0099283778

“The question mark in the title of Margaret Forster’s triple biography and memoir, Good Wives?, betrays something of her ambivalence on the subject of matrimony. To deconstruct what a ”good“ wife might be, she explores the lives of a ”wife-of“ trio who were all married to prominent men (as is Forster, to writer and journalist Hunter Davies), making them good subjects, if hardly representative. Mary Livingstone proved a determinedly submissive wife to her missionary explorer husband, constantly uprooting and following him over Africa on an ox wagon. For Forster there are only cursory overlaps with her own experience; she dismisses Mary quite harshly, while pitying the grimness of her existence. Fanny, married to Robert Louis Stevenson, was a more determined soul. Together they sailed to the South Seas in the search for hospitable climates for his frail constitution, where she nursed him, kept house, and wrote a little herself. When he finally died in 1894, though, so did much of Fanny. Forster has more time and sympathy for a woman who had seen something of the world on her own terms, even if the vow ”in sickness and in health“ was to hold undue pertinence. Lastly, the purposeful, militant Jennie Lee, who eventually married politician Nye Bevan, provokes only admiring connection in Forster. Lee, an MP herself, saw marriage as a practical contract, though she loved and protected Bevan dearly. Children were out of the question: not only did she refuse to play mother, she disdained playing housekeeper or moll, and refused to sacrifice her own career.

The ”Reflections“ from Forster that follow each wifely portrait are easily the most interesting sections of this bracing, unindulgent book. In comparing her own marriage to those of her subjects, she reflects insightfully on universal themes of marital union, such as in-laws, (in)dependence, entertaining, careers, money, home and children, and concludes that if she were considering it today as a young woman, she would marry for children, but not for a husband. Perhaps Hunter Davies might consider writing Good Husbands?, as a companion partner to this relentlessly thoughtful, stimulating work of scholarship and experience. --David Vincent --This text refers to an out of print or unavailable edition of this title.”

Synopsis from Amazon.co.uk of “The Morning Gift”
http://www.amazon.co.uk/Morning-Gift-Eva-Ibbotson/dp/0330444999/ref=sr_1_1?ie=UTF8&s=books&qid=1205636351&sr=1-1

“Ruth lives in the beautiful city of Vienna and is wildly in love with Heini Radik, a brilliant young pianist. But her world is about to change forever. When Hitler’s forces invade Ruth’s family flees to London, but she is unable to get a passport. Quin, a young professor and friend of the family, visits Ruth and in an effort to bring her back to London, he offers a marriage of convenience. As Ruth throws herself into her London life, Quin begins to fall desperately in love with her. Things are further complicated by the arrival of Heini ...”

Click on the Sunday Salon image for more information about this project and other contributors.

...brain the size of a planet... [userpic]

For Katie, Katie, Ashley, those who came before, those of us who are here now,

December 30th, 2007 (04:00 pm)
enraged

current mood: enraged

and those who will come after.

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.

...brain the size of a planet... [userpic]

OMG!

December 12th, 2007 (08:39 pm)

For [info]vassilisa and all my other fellow Linux-ers, check this out!

ETA: Just poked around to find out what distro it runs on - Xandros, which is apparently built on Debian. Looks nifty: http://www.xandros.com/products/home/home_edition.html

...brain the size of a planet... [userpic]

Writer's Block: Warning:

November 27th, 2007 (09:48 pm)

If you came with a warning label, what would it say?


View other answers

Is the human version of a cockroach - can and have survived under the most difficult conditions.  If those who once had ultimate power and control over me couldn't break me, no one else has the ghost of a chance.  The more difficult the situation, the more likely I am to survive it - just out of sheer bloody minded stubborness and spite.

...brain the size of a planet... [userpic]

Indeed...

October 24th, 2007 (07:51 pm)
Tags:

"Of all tyrannies a tyranny sincerely exercised for the good of its victims may be the most oppressive... but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience...

Their very kindness stings with intolerable insult...

To be 'cured' against one's will and cured of states which we may not regard as disease is to be put on a level with those who have not yet reached the age of reason or those who never will; to be classed with infants, imbeciles, and domestic animals. But to be punished, however severely, because we have deserved it, because we 'ought to have known better', is to be treated as a human person made in God's image...

And when they are wicked the Humanitarian theory of punishment will put in their hands a finer instrument of tyranny than wickedness ever had before...

The new Nero will approach us with the silky manners of a doctor, and though all will be in fact as compulsory as the tunica molesta or Smithfield or Tyburn, all will go on within the unemotional therapeutic sphere where words like 'right' and 'wrong' or 'freedom' and 'slavery' are never heard...

Even if the treatment is painful, even if it is life-long, even if it is fatal, that will be only a regrettable accident; the intention was purely therapeutic...

But because they are 'treatment, not punishment, they can be criticized only by fellow-experts and on technical grounds, never by men as men and on grounds of justice...

But we ought long ago to have learned our lesson. We should be too old now to be deceived by those humane pretensions which have served to usher in every cruelty of the revolutionary period in which we live. These are the 'precious balms' which will 'break our heads'."
C. S. Lewis, "The Humanitarian Theory of Punishment"

...brain the size of a planet... [userpic]

How To Work With Personal Assistants/Home Helps - Internet Resources?

October 19th, 2007 (10:50 am)

I’m looking for internet resources on how PWDs can best work with PAs/Home Helps to make sure they get the support they need in a respectful and dignified manner. I really want resources on how to manage the relationship itself rather than specifics on hiring/firing as these are different depending on where one lives, and the info on that aspect isn’t as hard to find. Something I can pass onto other PWDs so they have some ideas/suggestions on paper to refer to, specifically for the organisation for WWD that I run.

Thanks!

X-posting a number of places

(And no, I haven't left tracking this info down till the last possible moment, what on earth makes you think I would do something like that, hmmm?... Aside from my well-known tendency to procrasinate... and the fact the forum on this issue is on FUCKING SUNDAY WHAT THE HELL ARE YOU PLAYING AT WOMAN!!!! ::ahem::)

...brain the size of a planet... [userpic]

Speaking Out

October 15th, 2007 (01:05 am)
busy

current mood: busy

I’m working on being less of a coward and starting to speak out more on controversial issues affecting PWDs. So I commented on this article, it’s just an edited down version of my earlier post on the subject, but it’s the first time I’ve commented about this sort of thing on a public forum that is read by a lot of ABs.

...brain the size of a planet... [userpic]

Funny Things

October 14th, 2007 (10:27 pm)

Because I am still trying to avoid actual work (although, thank god, all of the things that don’t involve actually talking to people can be done any time of the day or night - so I am of course doing them at night), including the newsletter that should have been done two weeks ago, here are some fabulous and/or funny links I have come across recently:

Teh Holiez Bibul: LOLCat Bible Translation Project

The Human Clock

50 Worst Songs Ever
Click the link at the bottom of the page for the worst album covers ever. Including two nauseating inthpirational cripple albums that are wonderful in their awfulness. One is for a singing group called “The Braillettes” with an album titled, “Our Hearts Keep Singing”. Betcha can’t figure out what at least two of the singers have in common... Fairly mild compared to: ::duh, duh, duuuuuuuuh!!!:: “The Handless Organist, Truly A Miracle Of God”. Yup, she is a double arm amputee, how *did* you guess? The one that gets my vote for BEST album title of all time is “All My Friends Are Dead”, with a picture of a man crouched in front of a grave with a bible in his hands. And my personal favourite - an album by The Minister’s Quartet, four middle-aged, badly dressed men, with the title “Let Me Touch Him”. I nearly inhaled my tongue laughing!

I quite like the one with all of the naked young men - well half naked at least - with their arms cozily around each other, they look very relaxed and happy.

...brain the size of a planet... [userpic]

An excellent counter to my earlier post...

October 8th, 2007 (06:45 am)

http://observer.guardian.co.uk/uk_news/story/0,,2185322,00.html?gusrc=rss&feed=11

“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.”

...brain the size of a planet... [userpic]

Is this a slippery slope I see before me...

October 8th, 2007 (03:23 am)
absolutely fucking furious

current mood: absolutely fucking furious

The Sunday Times October 7, 2007
http://www.timesonline.co.uk/tol/news/uk/health/article2603965.ece

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.

====================================================
The Sunday Times October 7, 2007
http://www.timesonline.co.uk/tol/news/uk/health/article2604771.ece

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 on my friendslist have cerebral palsy, ranging from mild to severe forms. 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.

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.

...brain the size of a planet... [userpic]

Tonight's Dinner

September 1st, 2007 (10:59 pm)





One night all I had in the kitchen that was appetising was some smoked salmon, an avocado and some eggs, so I Googled to find out what I could do with those ingredients. This was the recipe I found:

Soft Scrambled Eggs with Smoked Salmon and Avocado

Ingredients:
8 eggs
3 Tbsp. heavy cream
2 Tbsp. unsalted butter
Freshly ground black pepper and sea salt
2 avocados, peeled and cut in slices
8 slices smoked salmon
Chopped chives (optional)

Preparation:

Crack the eggs into a bowl. Add the cream and whisk until the eggs look foamy and light.

Heat a 10-inch nonstick skillet over medium heat. Melt the butter until it foams; then turn the heat down to low and slowly pour in the eggs. Using a heat-resistant rubber spatula, slowly stir the eggs from the outside of the pan to the center. Once the eggs begin to set, stirring slowly will create large, cloudlike curds. This process takes about 10 minutes. It sounds easy, but perfect scrambled eggs that are soft and custardlike with no brown color are the sign of a really good cook. Season the eggs with a few cranks of black pepper and good salt, like fleur de sel. Serve with a few slices of avocado and smoked salmon, maybe a little chopped fresh chives.

---------

It’s more of a breakfast meal - but I’m not a morning person and really shouldn’t be around sharp knives and hot stoves when I’ve just woken up, so I usually have it as a light dinner. It’s very delicious. I don’t usually like scrambled eggs, grew up with the ‘stir the shit out of a couple of eggs, chuck them in a pan and stir until they are hard and crumbly’ method, and also had mass-produced powdered egg scrambled eggs at school camps and holiday camps. Gag.

...brain the size of a planet... [userpic]

Living

June 10th, 2007 (09:24 pm)
groggy

current mood: groggy

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".
 

...brain the size of a planet... [userpic]

Me and life in a nutshell

May 25th, 2007 (10:14 pm)
sore
Tags:

current mood: sore

"Books say: she did this because. Life says: she did this. Books are where things are explained to you; life is where things aren't. I'm not surprised some people prefer books. Books make sense of life. The only problem is that the lives they make sense of are other peoples' lives, never your own."

Gustave Flaubert

...brain the size of a planet... [userpic]

Do I Have A Sign Stuck On Me???

March 24th, 2007 (01:44 pm)
exhausted

current mood: exhausted

It's Saturday, and some head banana of a large non-profit umbrella org that my group is a member of thinks it's acceptable to ring me at home on a fucking Saturday to insist that I call him back so he can ask my opinion on changes to the membership structure. (I gather they are ringing around all members) He called this past Wednesday and instructed me to call him at home in the evening.  No.  Night time, not work time.  Tired.  Do not give a shit.  Not giving a shit on Saturday either.  It's not life and death.  (New membership fees are shit - too high for small orgs.)  Call during business hours on fucking week days, and I will answer or call you back.  If you stop reminding me of my batshit insane workaholic father.  It's Saturday!!!!!  You twerp!!!!   I have the forum tomorrow and I am exhausted.  It has been a very long week.  People suck.  My life sucks.

...brain the size of a planet... [userpic]

Fuck. Fuck. Fuck. Again and again.

February 10th, 2007 (12:54 am)
enraged

current mood: enraged

Couple carry out campaign of sadistic abuse

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. 

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.

...brain the size of a planet... [userpic]

Finally - HP 7!

February 2nd, 2007 (01:24 am)
Tags:

For my fellow Harry Potter fanatics...

http://news.yahoo.com/s/ap/20070201/ap_en_ot/people_rowling

"LONDON - "Harry Potter and the Deathly Hallows," the last of seven installments of the boy wizard's adventures, will be published July 21, author J.K. Rowling said Thursday.

Rowling announced the publication date on her Web site."

Counting down!

...brain the size of a planet... [userpic]

Australians please read and follow this link...

January 29th, 2007 (11:23 pm)

[info]splodgenoodles has details about a petition to put a vital medication for people with Crohns disease on the Pharmaceutical Benefits Scheme that will make it more affordable. Splodge talks about the benefits for Crohns sufferers in general and herself specifically, please read her post (if only for her nostalgic introduction - ah, memories! ;-) ) and sign the petition. http://splodgenoodles.livejournal.com/414515.html

Thanks!

I think most of the Aussies on my FList are also on Splodge’s and have seen this, but if you’re not, please pop over there for this. (Just read/friend her anyway if you haven’t, she’s very smart and very cool!)

-----------
Just won another Antonio Banderas DVD on Ebay - $0.99 plus postage - wacko!!! My early birthday pressie to me!

It’s cooled down here now, thank god. Question, does excessive heat affect the performance of one’s refrigerater? I’ve had mine turned right up for the last few days, it’s not as cold in there as it usually is.

...brain the size of a planet... [userpic]

Purple Caaaaaaaaaaaaaaane!!!!!!!!!

December 12th, 2006 (02:53 pm)
hot

current mood: hot

I'm going to get my purple cane!!! Yepyepyepyep! After all my storming around last week I remembered Technical Aid for the Disabled, a non-profit that adapts and creates assitive technology for PWDs that doesn't already exist. Contacted them, and even though it's just a cosmetic thing rather than a functional necessity, they've agreed to do it. Spoke to the volunteer who will do the painting, just now, and he should be able to do it next week! Wheeeeeeeeeeeeeeeeeeeeee! Purplepurplepurplepurple!!!!!!!!!

For other Australian gimps on my FL, there is a branch of this organisation in nearly every state, if you need something to make your life easier that can't be found in the usual ways, or if you need adaptions to equipment you already have - they are the ones to go to - and they usually only charge for materials, and depending on your situation, that may be funded through Home and Community Care (HACC) services, so you may not have to pay anything. Linky - http://www.technicalaidnsw.org.au/about/tadAu.html They also have cheap computers and internet - probably not needed by anyone reading this, but if you know anyone in Aus with a disability who would benefit from being online, but can't afford it - pass on the info.

As they are a non-profit, they are always needing funding, so if anyone wants to donate to a good cause at any point, I'm sure they wouldn't turn you down!

Purple!!!!!

It's 35 degrees celcius today, so I'm going to lie down on my bed and try not to melt into a puddle...

...brain the size of a planet... [userpic]

A New Blog

December 10th, 2006 (04:13 pm)

I’ve just created a new blog at Blogspot. Just because. :-)

This is where I’ll be reposting what I’ve written here and elsewhere in the past on disability, activism, abuse, books and life in general that is more polished than my “woe is me” posts here and is suitable for a more public viewing. 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.

I’ll still be using this blog as much as ever, of course, but the new one will be my more ‘public’ image.

...brain the size of a planet... [userpic]

Meme Me!

December 8th, 2006 (09:29 am)
awake

current mood: awake

By way of [info]azhure

Holiday Love Meme, Secret Santa Style! My entry is here Click back to the link to the original post for an explanation.

...brain the size of a planet... [userpic]

Stupid People, Stupider Questions, Another Day, Another Nervous Tic, Tic, Tic

December 4th, 2006 (03:09 am)
exhausted

current mood: exhausted

Scene:

Me, in my scooter on the train going into the city today. As the train nears the station I manoeuvre (?? sp??) out of the wheelchair bay that is parallel to the side of the train, so I’m facing the door that opens onto the platform

Man Standing Next To Me: It’s (the train) pulling up on the opposite side today. [this means I have to reverse out of the doors rather than just drive forward, as I planned - I don’t like reversing through the mob that is too thoughtless to wait for people to get off before they get on. Fuckwits]

Me: Ah. Thanks. ::mutters:: fucking Transperth....

Woman Standing Near The Other Door: How fast does that (the scooter) get up to?

Me: ::sighs inwardly - oh goody, Self Narrating Zoo Exhibit [1] Time (I get variations on this at least once a week):: About ten kilometres an hour.

WSNTOD: Does it go in reverse? [Note: this is not the first time I’ve been asked this - I get it from people I’m in lifts with, lifts with only *one* exit]

Me: ????????!!!!! ::WTF?????!!!!::

Me: ::very rapid internal dialogue:: What the hell do you *think* you fool! Of course it goes in reverse, what do you think I just keep going around in really big circles to get anywhere??? Your *brain* is clearly going in reverse!!! Stand behind me and find out!!!!

Me: ::maintaining my insanely polite public demeanour under extraordinary pressure:: Yes, it reverses, otherwise I’d just have to keep going forwards all the time. ::Duh!!! Remind me how able bodied people are supposed to be superior to us crips again?::

Next time some twit asks me this, I’ll just smile sweetly, say No, of course it doesn’t reverse - just before I reverse out of the train or lift...

And it’s Sunday, the bottleshop that I buy my alcoholic ribena from was closed. I also had to fight my way through my suburb’s Christmas street party to get home - all the while dying to go to the toilet, but the water retention in my feet had meant I couldn’t wear shoes, so I couldn’t use a public toilet. I did get into my bathroom - but not the toilet itself unfortunately - at home before I wet myself. :-(

This is just *one* of many examples of what people with obvious disabilities deal with in public. I’ll write about the men who think it’s funny to threaten, intimidate and scare me into ongoing panic attacks another time. Not to mention the people who get terribly offended when I refuse to answer their rude and intrusive questions or when I object to their attempts to suggest a ‘cure’ for me. See what I mean when I say that the disability isn’t the stressful part of my life?

Please pass the valium. ;-)

[1] (http://www.everything2.com/index.pl?node_id=1404508 Written about the experiences of people with autism, but applies to other disability categories as well)

...brain the size of a planet... [userpic]

Opera Virgin

November 28th, 2006 (02:01 am)

I’m going to see a performance of “The Magic Flute” on Saturday. This will be the first opera I’ve ever seen - I’m more of a musical theatre buff. I don’t know anything about “The Magic Flute”, except that it was written by Mozart, so I think I will do some reading up on it. I haven’t been up to theatre or movie-going in the last few months, which is very unlike me.

...brain the size of a planet... [userpic]

NaNo Word Count

November 12th, 2006 (11:04 pm)

Zokutou word meterZokutou word meter
8,018 / 50,000
(16.0%)


Ouchouchouch. That's all in one week. More than I've every written at one time in my whole life. And I have *no* idea what I am writing about. :-)

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