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The Fringe Benefits of Failure, and the Importance of Imagination | Harvard Magazine

March 23rd, 2011 (02:45 pm)

The Fringe Benefits of Failure, and the Importance of Imagination | Harvard Magazine

Commencement address by JK Rowling.  From the transcript:

"Unlike any other creature on this planet, humans can learn and understand, without having experienced. They can think themselves into other people’s places.

Of course, this is a power, like my brand of fictional magic, that is morally neutral. One might use such an ability to manipulate, or control, just as much as to understand or sympathise.

And many prefer not to exercise their imaginations at all. They choose to remain comfortably within the bounds of their own experience, never troubling to wonder how it would feel to have been born other than they are. They can refuse to hear screams or to peer inside cages; they can close their minds and hearts to any suffering that does not touch them personally; they can refuse to know.

I might be tempted to envy people who can live that way, except that I do not think they have any fewer nightmares than I do. Choosing to live in narrow spaces leads to a form of mental agoraphobia, and that brings its own terrors. I think the wilfully unimaginative see more monsters. They are often more afraid.

What is more, those who choose not to empathise enable real monsters. For without ever committing an act of outright evil ourselves, we collude with it, through our own apathy."

Read or watch the whole thing - full transcript and video are at the link.

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Happy International Women's Day!

March 8th, 2011 (10:18 pm)

If you're not singing or dancing a little bit at the end of this - well, maybe check your pulse... ;-)

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Yummy New Book - karenhealey is fabulous!!!

April 1st, 2010 (06:39 am)

Picked up my copy of karenhealey‘s debut YA novel “Guardian Of The Dead” from the PO yesterday (hardback edition from The Book Depository $20). Am halfway through it, and I should be catching up on sleep from the last few weeks, but I don’t think I’ll be doing that till I’ve finished reading it.

It is very very very good. If this is what she can do with a first novel, I can’t wait for the next one. Like me, Karen is a Kiwi/mid/south Cantabrian expat living in Australia and a huge fan of Margaret Mahy, one of the best writers to come out of NZ, and one of the best kids/YA writers in the world full stop. There are homages to one of Mahy’s most famous YA novels, “The Changeover” (if you love “Guardian Of The Dead” and haven’t read “The Changeover” remedy that ASAP.), but “Guardian” is not an imitation. It is original and beautiful, and if I were Margaret Mahy (oh, I wish), I would be thrilled to bits to have influenced someone who writes as well as this. I am grinning like a loon at all the familiar NZ/Canterbury references in “Guardian”, and having random attacks of nostalgia. Her characters are wonderful, and I would have LOVED to have read this as a teen - Ellie would have been an instant literary friend.

Here is a link to a short story by Karen “Queen Of The Kitchen”, and info on her novel is at the same website. Buy, read, enjoy!

Karen, I was in Borders today, and there were half a dozen or so copies of the paperback displayed prominently in the YA section - face out. Very exciting!

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Divorcing Your Parents - Well Blog -

October 21st, 2009 (06:15 pm)

Divorcing Your Parents - Well Blog -

I could have really used reading something like this a few years back, so thought I'd post it for the benefit of anyone struggling with poisonous parents now.

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Both parents should have gotten life for this...

October 4th, 2009 (03:46 pm)

current mood: angry

... fathers are no less responsible for the care of their children than mothers.

Couple get life in jail for murder of daughter | The Australian

THE murder of the seven-year-old girl was prolonged and excruciating.

Starved by her drug-addicted parents over a period of 20 months, little Ebony deteriorated from a chubby 20kg girl in March 2006 to an emaciated wreck of a child who weighed just 9kg when she died in November 2007.

Yesterday, almost two years after Ebony’s lifeless body was found on her squalid, urine-soaked mattress, her killers -- her own mother and father -- were brought to account.

Her mother, 36, who earlier this year was found guilty of Ebony’s murder at Hawks Nest on NSW’s north coast, was sentenced to life in prison, with no chance of release on parole.

Ebony’s father, 48, who was convicted of his daughter’s manslaughter, was sentenced to 16 years behind bars. He will be eligible for parole after serving 12 years.

Before the couple’s sentences were handed down in the NSW Supreme Court yesterday, Justice Robert Hulme recounted the gruesome details of the crime.

When Ebony, who was autistic, died on November 3, 2007, aged seven years and seven months, she was so malnourished that forensic pathologist Kasinathan Nadesan described her body as “wasted and dehydrated. It looked almost like a mummy to me.”

Her face was distorted, her eyes sunken. There was just a thin layer of skin stretched over her skull. Rigor mortis did not set in because Ebony had virtually no muscles.

The girl’s clothing and bedding were covered with urine and vomit stains; her hair was matted, with faecal remnants trapped in it. And Ebony’s lungs were pink and clean -- consistent with someone who had rarely ventured outdoors. Indeed, the girl was kept a virtual prisoner in her room which, the judge noted, contained not a single toy or decoration, other than a picture of a “sad-looking little girl”.

Justice Hulme said that in the latter part of Ebony’s life, both parents were “so absorbed in their own lives that they did not care about her”.

Ebony, who had three siblings, was excluded from every family celebration and was absent in every family photo taken from July 2006 onwards because, according to her mother, the girl “would make a nuisance of herself on such occasions”.

The judge said the couple’s reckless indifference towards Ebony was “morally reprehensible”.

“The lack of parental love and concern is further confirmed by the fact that in the fortnight between her death and their arrest they made no inquiry whatsoever about when her body would be released from the morgue and they gave no thought to a funeral”.

Justice Hulme said Ebony’s mother had been “unimaginably heartless and cruel”.

“She witnessed her suffering over an extended period and chose not to lift a finger to help her,” he said.

And he said the girl’s father, who was placing internet bets on horse races in the hours after his daughter’s death, “could show no less love to his child”.

Throughout Ebony’s life, she was sporadically taken to see medical specialists for her various ailments, including her speech problems, and her impaired mental development.

But her parents rarely followed up on therapies and recommended programs.

Seven months before Ebony’s death, officers from the NSW Department of Community Services attended the family’s home in relation to the girl’s two older sisters.

The officers asked the mother about Ebony, but she did not allow them to see her daughter because “she was sleeping and would be too distressed to know that the department is involved”.

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Essential Reading

August 5th, 2009 (01:00 pm)

If there is only one post of mine that you ever read, if there is only one link that I post that you click on, please let it be this one:

Another post about rape « Fugitivus

From this post:

“If women are raised being told by parents, teachers, media, peers, and all surrounding social strata that:

* it is not okay to set solid and distinct boundaries and reinforce them immediately and dramatically when crossed (”mean bitch“)
* it is not okay to appear distraught or emotional (”crazy bitch“)
* it is not okay to make personal decisions that the adults or other peers in your life do not agree with, and it is not okay to refuse to explain those decisions to others (”stuck-up bitch“)
* it is not okay to refuse to agree with somebody, over and over and over again (”angry bitch“)
* it is not okay to have (or express) conflicted, fluid, or experimental feelings about yourself, your body, your sexuality, your desires, and your needs (”bitch got daddy issues“)
* it is not okay to use your physical strength (if you have it) to set physical boundaries (”dyke bitch“)
* it is not okay to raise your voice (”shrill bitch“)
* it is not okay to completely and utterly shut down somebody who obviously likes you (”mean dyke/frigid bitch“)

If we teach women that there are only certain ways they may acceptably behave, we should not be surprised when they behave in those ways.

And we should not be surprised when they behave these ways during attempted or completed rapes.

Women who are taught not to speak up too loudly or too forcefully or too adamantly or too demandingly are not going to shout ”NO“ at the top of their goddamn lungs just because some guy is getting uncomfortably close.

Women who are taught not to keep arguing are not going to keep saying ”NO.“

Women who are taught that their needs and desires are not to be trusted, are fickle and wrong and are not to be interpreted by the woman herself, are not going to know how to argue with ”but you liked kissing, I just thought…“

Women who are taught that physical confrontations make them look crazy will not start hitting, kicking, and screaming until it’s too late, if they do at all.

Women who are taught that a display of their emotional state will have them labeled hysterical and crazy (which is how their perception of events will be discounted) will not be willing to run from a room disheveled and screaming and crying.

Women who are taught that certain established boundaries are frowned upon as too rigid and unnecessary are going to find themselves in situations that move further faster before they realize that their first impression was right, and they are in a dangerous room with a dangerous person.”

The whole post is very important, please click and read and pass on.

My response: This is so spot-on, so right, and so beautifully and strongly written. I remember as a child and teenager thinking about these things, how was I going to use the self-defence classes my parents sent me to, what use was it them (parents) telling me how to protect myself against attackers, when they were forever telling me not to talk so loudly, so much, be so opinionated. When they expected me just to let doctors and physios do painful things to my body without crying or saying no, how was I supposed to stop strangers from hurting me?

No wonder I know so many women with disabilities who have been raped. Not only are we at higher risk from predators and abusers, we also have a double dose of social brainwashing to silence and disempower us. If you have a disability you are not supposed to talk about how you are treated, how you are abused and neglected. It is “too depressing” for the rest of the world to hear about. We are supposed to go along with the myths and misconceptions that “no one would abuse a person with a disability”, that everyone looks after us, that rape is all about sex, not power, and who would want to rape a woman with a disability, after all, we are not sexually desirable. Always forgetting that rape and abuse is about POWER, not sex, not desire.

I am lucky. I have not been raped. I have been in several nearly-not-quite situations and many outright abusive medical situations, but I have not been raped. I am lucky. That is all it is, luck. Nothing to do with what I did or didn’t do. I am not better or smarter or stronger than anyone I know who has been raped. I am just luckier.

This post is public, and can be linked to.

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Victorian Bushfires Help Information

February 10th, 2009 (01:15 pm)

This is a really good one-stop-shop link of ways to help the victims of the Victorian bushfires

Bushfire - Other Ways to Give -

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To the people who say "Why didn't they leave?"....

February 8th, 2009 (10:49 pm)

*This* is why.

The man up the road is on fire | Herald Sun

CAROL Kane desperately searched evacuation centres in Bendigo for her husband, confident he had been rescued.

But Kevin “Mick” Kane, ill and housebound, did not make it out of his home alive.

Ms Kane began looking for Mick after fire ripped through the suburb of Long Gully, obliterating their home.

Neighbour Jenny Carolan said she spoke to Ms Kane on Saturday night at the Eaglehawk Leisure Centre, one of Bendigo’s evacuation points.

Ms Kane believed someone had saved her ill husband, who relied on a walking stick and a motorised scooter.

“I said, ‘Where is Mick?’ and Carol said, ‘We can’t find him’. She was pretty calm, she thought he’d been evacuated,” Ms Carolan said.

Mr Kane died alone in his Daniel St home as fire ripped through Long Gully after 5.30pm Saturday.

And, yes, there are ‘people’ who are asking that question. From the comfort of their safe homes.

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Make A Difference

February 8th, 2009 (08:36 pm)

current mood: angry

ETA - Crap, the link from Karen’s post to the Red Cross hasn’t copied - please click through to her post.

ETA again - it takes a while to get through to the Red Cross via phone, but be patient.

For anyone who doesn’t already know, Victoria is in the grips of one of the worst bush fire tragedies in Australia’s history. One of the most appalling things about this is that many of these fires WERE DELIBERATELY LIT. The rest of this post is from karenhealey she says it better than I could and has a fantastic way for people to help from all over the world. I’m about to donate money now.

As predicted, yesterday’s horrific heat, at the end of a 34 day dry spell, resulted in fires all over south-eastern Australia.

But the fires were very fast, and very furious, and in addition to widespread devastation have utterly destroyed at least two towns: Marysville and Kinglake. At least 84 people are reported dead, and that number is expected to rise.

I have been through Kinglake several times. I’ve stayed at a home near there (at last check the inhabitants were fine), walked through the beautiful bush, helped clear the scrub. That’s land I’ve worked, and now it’s a sooty wasteland.

All those people; all those homes; all that life. It’s one of the worst natural disasters in Australia’s colonial recorded history.

Except that it’s not entirely natural. Criminologists estimate that about half of Australia’s fires are set by humans. Arsonists have been spotted helping the fires spread or relighting fires that have been controlled or extinguished. I would cheerfully strangle each one of those murderous assholes, but, you know, I can’t, so rather than restrict myself to black curses, I thought I would do something more productive.

I’m hereby announcing the Fuck You Firebugs Donation Drive. I’m supposed to be getting an advance cheque in the very near future, so I’m in a position to do this: I’ll match, dollar for dollar (up to five hundred dollars) every donation to the Australian Red Cross Victorian Bushfires Appeal that you make.

Because, seriously, fuck those guys.

How it works:

1) You go to the Victorian Bushfires Appeal website and make a donation.

2) You come back to this post ( and tell me how much you donated. (All comments are screened; I’m the only one who’ll see your name and the donation amount, unless you request otherwise).

3) I announce donation totals as we go, and make my contribution.

4) BAM! Your donation just doubled.

5) Fuck you, firebugs!

Feel free to spread the word, even if you can’t afford to make a contribution yourself. I have great faith in the power of dispersed communities to make a real difference. It’s my view that the only answer to people being evil is people being good - compassionate, generous, and supportive in the face of atrocity beyond comprehension.

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O M G....

May 26th, 2008 (05:15 pm)

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.

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New Book on Women and Chronic Illness

May 26th, 2008 (04:20 am)

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

—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

Circle of Care: Transitioning through One Woman’s Experience of Breast
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

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!

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The Sunday Salon - Starting Off

March 16th, 2008 (11:53 am)

current mood: busy

This is the number one of at least two posts today for my first The Sunday 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. Review of “Good Wives?”

“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 of “The Morning Gift”

“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.

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

December 30th, 2007 (04:00 pm)

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.

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December 12th, 2007 (08:39 pm)

For 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:

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Writer's Block: Warning:

November 27th, 2007 (09:48 pm)

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

View 509 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]


October 24th, 2007 (07:51 pm)

"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"

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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.


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::)

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Speaking Out

October 15th, 2007 (01:05 am)

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),,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)

current mood: absolutely fucking furious

The Sunday Times October 7, 2007

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

The Sunday Times October 7, 2007

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

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)


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]


June 10th, 2007 (09:24 pm)

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
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)

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)

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.

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