Sunday, March 30, 2008
On Saturday, March 29, 2008, FRIDA hosted our first ever Sex and Disability Town Hall meeting. Overall, about 75 people attended from many different areas of our community. Thanks to everyone who attended and to those who staffed the event! Folks had such an eager spirit to learn and the whole setup was done with creative flair (yes, we had penis and vagina cakes).
The morning was devoted to workshops and the afternoon was spent on a speakout forum where community members could have their say. Workshop topics included sex resources for people with disabilities, psychiatric disabilities and relationships, an LGBTQ forum, and a showing of “Doin’ It: Sex, Video and Disability,” available at http://www.beyondmedia.org/catalogue.html and made by young women with disabilities ages 16 to 24.
Several organizations tabled at our event, including the RIC Domestic Violence Program, the Schwab Rehab AIDS and HIV Prevention Program, Early to Bed, Chicago ADAPT, the Disability Pride Parade, 3E Love, the Chicago Abortion Fund, the UIC Institute on Disability and Human Development, and of course, FRIDA. Many thanks to those who made donations, including Jimmy John’s for a steep discount on sandwiches!
Overall there was an incredible feeling of sharing and open mindedness about many ways to express sexuality. We had folks of all ages (from teens to sixties) and all colors of the rainbow too. Both disabled and nondisabled women attended. We were all excited to meet new folks from the community and make new friends.
For folks who were unable to attend, guess what? We took notes and photos! Below are general notes from the speakout forum and at this link you will see the pictures: http://www.ourfrida.org/events/so-what-happened-all-about-the-frida-sex-and-disability-town-hall/.
Keep scrolling to get the long-distance version of the FRIDA spirit!
The following notes were taken by Jenny Choi. Thank you Jenny! Please note that these comments are very brief and general notes on what was actually said at the meeting. We encourage to readers to have Sex and Disability Town Halls in their home towns.
How and where can we meet people for dating or relationships without going online?
The Internet can still be a good place to meet people.
Safety can be a concern.
We need more sites for disabled people.
Try to go out more to increase your chances of meeting someone.
Have the inner strength and self confidence to meet people. Try a phone buddy, Access Living, FRIDA (support network)
Can be wild or mellow.
From the heart, not looks.
What is a visit to the gynecologist like?
The Fe Fes discuss this.
It’s a bit intimidating the first time.
There is a pelvic/vaginal area exam.
No needles! Not anything too scary.
It’s important to have an exam once sexually active to protect your health.
Sex is not just penetration
Different levels of sex for different people
For women who date other women, it can be a hand, a finger, a sex toy etc.
Foreplay is also important.
Definition of sex could be no penetration at all (it doesn’t have to involve a penis).
“Make love to my mind” (by talking)
What is foreplay?
Making love to a woman can be the way you say “good morning.” Treat her well, etc.
Touch/intimacy is important (a hug, etc). Skin to skin contact.
Why do people choose celibacy?
Sexually transmitted diseases (STDs)
interest in sex wanes
Why do people make fun of virgins?
Jealousy by people who regret some choices they’ve made.
Very few virgins.
It’s important to respect a person’s choice not to have sex, or to wait to have sex.
Older women can want and enjoy sex.
Sex ed should be more inclusive
Lack of knowledge
Schools in general are behind in educating about the disability movement
Sometime a woman with a disability needs to be more forward, etc in approaching people.
People are tentative if they are unfamiliar with disability culture
Women with disabilities can have one-night stands
How to deal with self-disclosure on private or personal matters
You don’t have to self-disclose if you don’t want to
You can make your own choices
We should have sex because WE want to.
If a man calls you a ‘ho,’ he is insecure.
Safety issues: going out alone (and not with a man)
Our society has certain expectations on how a man or a woman is supposed to behave. Challenge those expectations.
Women need to learn to protect each other.
If you have an attitude of dominance, it might help safety issues.
You should be able to have as much sex as you want without judgment.
Be true to yourself.
It’s not anyone’s business who I have sex with, or how many times I have sex.
We should celebrate all of our choices as women.
We can disagree, but not judge
Keep negative opinions to oneself
Maybe organize a group to address these issues (by age, disability…more like a support group)
When is the right time to have sex?
Embace differences, uniqueness.
Men who take out their frustration on women have unhealthy issues (the way they grew up, cultural expectations, etc).
Avoid people who try to dominate you.
Women are sometimes afraid of being taken advantage of because of their disability
Friday, March 28, 2008
Readers might recall CNN's recent story about Debbie Shank, who is being sued by Wal-Mart for nearly $470,000 in medical expenses. If not, here is a brief overview, followed by a link to a petition that's been created by friends and supporters of the Shank family:
Shank, 52, worked as a shelf stocker at Wal-Mart when, seven years ago, she suffered severe injuries to her brain from a car accident; Shank now uses a wheelchair and lives in a nursing home.
After Shank and her husband, Jim, were awarded about $750,000 in a lawsuit against the trucking company at fault in the accident, Wal-Mart demanded reimbursement for all the money it had paid for Debbie's medical bills - plus interest and legal fees. The Shank's didn't notice in the fine print of Wal-Mart's health plan policy that the company had the right to recoup medical expenses if an employee collects damages in a lawsuit.
Last week, a Republican judge ruled in favor of Wal-Mart, and the US Supreme Court refused to hear her case. According to The Huffington Post, "the ruling will completely clean out (and then some) the trust that was set aside for Debbie Shank's long-term care. "
If you would like to support the Shank family in their efforts to persuade Wal-Mart to reverse their decision, then consider signing this petition and forwarding a link to friends.
Further details here, here and here.
03/21/08 to 03/28/08
Four months after he was declared dead and doctors were about to remove his organs for transplant, a 21-year-old man says he feels fine.
An 85-year-old woman who was hospitalized after she was found lying in her feces, died on Wednesday. Three relatives were taken into custody on suspicion of elder abuse. No charges have been filed. The case as been turned over to prosecutors.
A bill proposed to allow California women in their last three-months of pregnancy to qualify for temporary-disabled parking placards was rejected by a legislative committee. A similar bill was proposed four years ago, but was pulled after controversy. Opponents of the bill claim pregnant women need to be as active as possible, and said giving them access to disabled parking would limit the availability of placards for people with serious disabilities. Some women's groups also opposed defining pregnancy as a disability.
The safety of people with intellectual disabilities is a key concern as they move into the community in Buffalo (NY).
The Story of C.: Teaching Poetry to Children with Disabilities; Nicole Callihan, Teaching Artist for Teachers & Writers Collaborative and Language Lecturer at New York University discusses teaching poetry to students with moderate to severe cognitive and intellectual disabilities with what she and her students call the “Magic Poetry Box.”
Jack Kevorkian, the assisted-suicide advocate who served eight years in prison for second-degree murder, announced Monday he's running for Congress as an independent. Kevorkian, 79, is challenging a Republican incumbent for a district in suburban Detroit.
Under proposals from members from Begium's coalition government, teenagers should have the right to medically assisted suicide and the parents of terminally ill younger children should be able to choose euthanasia.
A councillor from Britain's Conservative Party who suggested euthanasia as a means to cut the cost of caring for children with special needs has been suspended.
Thursday, March 27, 2008
From The Associated Press
An overdose of barbiturates killed a tumor-stricken French woman just days after officials denied her request for euthanasia, a state prosecutor said in an interview published Thursday.
An autopsy on the body of Chantal Sebire found an amount of fast-acting barbiturates three times the lethal dosage, prosecutor Jean-Pierre Alacchi told Le Monde newspaper.
The sudden death on March 19 of Sebire, a 52-year-old former teacher, raised calls to re-evaluate French law to assure the right to die. Two days earlier, a Dijon court had refused her request for doctor-assisted suicide.
Sebire was diagnosed about eight years ago with esthesioneuroblastoma, a rare form of cancer. A tumor had burrowed through her sinuses and nasal cavities, causing her nose to swell to several times its original size and pushing one eyeball out of the socket.
Alacchi said the investigation was continuing, particularly to determine how Sebire obtained the barbiturate. It was of a type commonly used in veterinary circles, but never by doctors, he told Le Monde.
Repeated calls by The Associated Press to the courthouse in Dijon, in eastern France, were not answered.
Gilles Antonowicz, Sebire's former lawyer, said he did not have any information beyond press reports about Alacchi's interview, but said he feared the case would drag on.
"As I understand it, she ended her life by using barbiturates," Antonowicz said by phone.
"Unfortunately, this case is going to continue ... I don't know what it will prove if they find what they think they'll find."
The prosecutor "could just close his eyes," he added.
Sebire's family opposed the autopsy, but Alacchi maintained it was necessary.
The Denton State School (Texas) for people with disabilities is under review following dozens of allegations of abuse and neglect at the facility.
According to The Dallas Morning News, the facility, which is home to 600 people with physical and intellectual disabilities, first made headlines in 2002 when a young male resident nearly died after being beaten into a coma by an employee who was coming down from a drug-induced rage.
The investigation of the Denton State School comes two years after the US Justice Department found widespread abuse and neglect inside the Lubbock State School (Texas) for people with disabilities. A report after that investigation cited poor medical care, improperly restrained and sedated residents, and more that 17 deaths at the institution during an 18-month period. It is claimed that 66 percent of its residents had been injured by another resident.
In one cited case, employees found a woman unresponsive but did not perform CPR or call for help for half an hour. According to paramedics, the woman had been dead for hours. According to investigators, the employees falsified reports to indicate that someone had been looking in on the woman.
Last year, a review of the 13 state institutions for people with disabilities by the Dallas Morning News found thousands of allegations of abuse and neglect. Apparently, hundreds of these allegations have been confirmed.
Read the full article here.
Tuesday, March 25, 2008
From the Associated Press
A transplant surgeon accused of hastening the death of a man so his organs could be harvested has been ordered to trial on one count of felony dependent adult abuse, but two other felony charges involviing the dying man were dismissed.
The criminal case against Dr. Hootan Roozrokh of San Francisco is the first such action against a transplant doctor in the United States.
After a preliminary hearing in San Luis Obispo County, Superior Court Judge Martin J. Tangeman issued a ruling Wednesday describing an uncoordinated scene surrounding the 2006 death of Ruben Navarro at Sierra Vista Regional Medical Center, which had never handled a "Donation After Cardiac Death (DCD)" case.
Navarro, 26, had a debilitating neurological disease and was in a coma when he was admitted to the hospital after a heart attack.
Roozrokh is to be arraigned on April 2. It's not known when his trial will begin.
Read the entire article here.
Two of the people (a 46-year-old woman and a 49-year-old man) charged in connection with the kidnapping, rape and torture of Megan Williams, a 20-year-old disabled, African Amercan woman in Logan country (W.VA) last summer have received the maximum sentences possible.
Seven white Logan County residents (two women and five men) were charged with the kidnapping and assault of Williams. Two other defendants had already pleaded guilty and been sentenced. Felony charges are pending against two others. A seventh defendant was indicted on a misdemeanor battery charge.
Read more here and here.
Saturday, March 22, 2008
Earlier this week, Linda posted a link to a story about the French woman Chantal Sebire, who was found dead in her apartment a couple of days after being refused the right to euthanize herself. Sebire had a very severe tumor in her nasal cavity that caused extreme facial disfiguration. The tumor caused her to to her senses of taste and smell, and last October, her ability to see. She was a mother of three. She stated, over and over, that her condition caused her extreme pain. It ate away her jaws and stretched her eyes and nose area to a very extreme degree. At this time, her cause of death is still undetermined.
Sebire's case has caused me to spend a lot of time lately considering conditions that alter the face, and the ensuing trauma in dealing with the change to your previous outward appearance. I think this issue has strong ties to the feminist issue of bodily difference and media portrayals of the female person, and the non-gender specific issue of body change over time.
Many folks may be familiar with Autobiography of a Face by Lucy Grealy, which deals with Grealy's childhood cancer, which caused her to lose part of her jaw. She spent much of the remainder of her life dealing on different levels with surgeries and efforts to make her face appear more average. She also spends quite a bit of the book contemplating how she expressed herself as a feminine woman to men and society as a whole, which makes it a book feminists with disabilities should take a look at (in my view).
In addition, many folks may have seen shows on the TLC channel that deal with surgical intervention on extreme cases of facial disfiguration. If you have not seen these shows, they deal with cases where people not only look different but are culturally and physically disabled by their conditions. Doctors try to repair the faces to something approaching averageness, and depending on the situation, people try to work on the involved person's self esteem. This is not Extreme Makeover---the people on that show merely look different. The folks on the TLC medical shows are significantly disabled by their conditions. It definitely bothers me that this is framed as "entertainment."
Finally, in the past few years, I myself have become prone to temporary bouts of angioedema, or facial swelling. I don't know yet what causes this, because the circumstances are different each time. In each case, I have severe swelling of my lips and sometimes my cheeks and under eye area. Sometimes just one lip is affected, but each time it gets worse, so I have an Epipen in case it ever affects my throat or breathing ability. My angioedema often looks something like this: http://www.crat.org/docs/swell2.jpg. It is not permanent and definitely not as scary and serious as Chantal Sebire's case or the people showcased on TLC.
The scary part about angioedema, for me, is that I have this terrible sense of fear and anxiety over having "lost my face." The last time it happened, I kept waking up in the middle of the night for about a week with a start, thinking the swelling was coming back (it had initiated in the middle of the night). The experience definitely revealed how important my normal face is to me, how deeply I like it and do not want it to change. And, when I have the swelling, I have to go out in public to the ER to get help, so I definitely experience the stares.
All this is most certainly not to place my angioedema problems at a level on par with Sebire's case, but to say that I think that losing your face as you know it is a tremendous psychological blow. One of the top issues for women with disabilities is most certainly body image and whether one appears attractive/approachable to others. However, another significant and related problem is how the media covers cases like Sebire's. Was facial reconstruction considered? Was she physically able to commit suicide? Was her pain relievable? Was she in counseling? Would the French treat this situation in a certain way culturally? It's really not clear, and it is damaging not to know because people leap to try to imagine what it would be like to be her. Including me!
Thoughts on this issue? I'm really putting this forward as an angle on our whole discourse, for more discussion.
Friday, March 21, 2008
for the week 03/14/08 - 03/21/08
During a lecture on Tuesday at Emory University in Atlanta, feminist-disability Professor Rosemarie Garland-Thomson asked for a review of cultural images of people with disabilities. "Images of people with disabilities are out in the world ... They are made to be displayed in public, and they do a lot of important cultural work," she said.
A woman has been charged with murdering her 14-month-old adopted son, who had Down syndrome. She is also charged, along with her husband, of abusing their adopted 4-year-old son, who also has Down syndrome. Both children were adopted in Russia.
A New Zealand woman sues over disability bias in a ground-breaking case "with the potential to change the lives of thousands of New Zealanders with disabilities."
Thursday, March 20, 2008
A French woman severely disfigured by facial tumors has been been found dead just two days after a court rejected her request for an assisted suicide.
Medical examiners were Thursday looking into the death of 52-year-old Chantal Sebire -- whose case had prompted nominally Roman Catholic France to reexamine
its stance on euthanasia -- to determine whether anything illegal had taken place.
It was not immediately clear how Sebire died.
Sebire had suffered from esthesioneuroblastoma, a rare and incurable form of cancer for eight years, developing tumors in her nasal passages and sinuses that distorted her face and caused her nose and eyes to bulge.
The woman from Dijon, in eastern France, said drugs were ineffective against the excruciating pain caused by the condition and there was no reason doctors should not be permitted to hasten her death.
Assisted suicide is illegal in France, however. The law permits only passive euthanasia -- removing feeding and hydration tubes when a person is in a coma, or inducing a coma and then removing the tubes.
Sebire's lawyer had tried to convince a French court that it was "barbaric"to put her through the ordeal of dying slowly in an artificial coma, something that could take up to two weeks while her three children looked on in anguish.
The court turned down the appeal Monday.
According to the St. Louis Post-Dispatch, police now believe that Dorothy Dixon, who was found dead on January 21 as the result of injuries she sustained from being beaten, scaled and shot with a pellet gun, may have been subjected to at least two months of abuse before she died. Implicit to this report is the suggestion that her death might have been prevented; according to a neighbour, the police were told in October 2007 that Dixon was being abused, but they didn't investigate further.
As reported last week, Dixon, who was intellectually impaired and six-months pregnant, was found dead in the bedroom of her apartment in Alton, West Central Illinois. A former occupant of the apartment, along with five other tenants, three of them minors, have been charged with her murder. Each faces four counts of first-degree murder and intentional homicide of an unborn child, heinous battery, aggravated battery and unlawful restraint.
Monday, March 17, 2008
Readers might recall earlier posts about Miracletina Nanai, the disabled Samoan baby, also known as Baby Miracle, who continues to push on, to progress, despite the predictions of doctors that she would not survive:
More news. Via stuff.co.nz comes word that Baby Miracle has come through her second operation at Miami Children's Hospital (Florida, USA).
Last week, Baby Miracle, who is 6-months-old, had her first operation to remove a fluid sac from her back (a complication of spina bifida). The fluid sac (meningocele) was potentially fatal because it threatened to burst.
Last Friday (March 14), she was recovering from a second round of surgery on her cleft lip and palate, and also her eyes so as to prepare them for shells that will enable her to get prosthetic eyes in the future. She has also had a feeding tube inserted and an amniotic band placed on her leg.
There are plans to perform surgeries on her hands, her feet and her skull in the future.
Baby Miracle, along with her family, is expected to be in the USA for six months. She is under the care of John Ragheb, chief of pediatric neurosrgery at Miami Children's Hospital, and S. Anthony Wolfe, chief of the hospital's plastic surgery division, who are providing medical services for her free of charge through the Child Foundation Inc.
There is more information about Baby Miracle, and fabulous photos, here.
Friday, March 14, 2008
Jennifer T. of Chicago brought this to my attention.
Mom Gets 20 Years For Killing Disabled Daughter
ST. CHARLES (STNG) ― A west suburban woman was sentenced to 20 years in prison Friday after pleading guilty to the 2006 slaying of her disabled daughter. Betty Whitten Friday agreed to a sentence of 20 years in exchange for a guilty but mentally ill plea to second-degree murder, a Class 1 felony. Kane County Circuit Judge Philip DiMarzio accepted the plea, recommending that Whitten receive treatment for mental illness while in prison, according to a release from the Kane County State's Attorney's office. On April 3, 2006, the 59-year-old Whitten fatally stabbed her disabled daughter, Nyakiambi Whitten, 34, three times with a butcher knife about 11 a.m. She then placed her daughter's body in the family's 2002 Hyundai and drove it through a guardrail near the Prairie Street Bridge in St. Charles. The car landed on its roof in Mount St. Mary's Park along the Fox River, the release said. At age 2, Nyakiambi Whitten was diagnosed with cerebral palsy and developmental disabilities. Betty Whitten will be given day-for-day credit and credit for time served in jail since her April 3, 2006, arrest.
Linda forwarded this posting---I ran it by Jim Charlton, author of Nothing About Us Without Us and international disability rights activist, and he knows Anita Ghai. This is a reputable call to action.
It happened on 8th of March 2008, a day when some of us were busy observing International Women's Day. At Pavlov Mental Hospital, a Government run mental hospital in Kolkata, daughter of one female patient came to visit her. As her condition was serious, Doctor Ashis Acharya took the daughter to visit her mother in the ward. To their utter dismay they found that not only the mother, but also all the female patients were stark naked. According to the hospital authorities, this happened because the clothes were gone for washing.
As Dr. Acharya protested, the Class IV staff started agitating against him and asked him to apologies. Dr. Acharya refused to do so, however, Hospital Super apologized on his behalf. One of the nurses, when asked said normally second set of clothes are given to them when one set goes for washing but keeping mentally ill patients complete naked is "not a serious issue".
We have heard several stories of torture within Pavlov Mental hospital and we are also aware how in all Government hospitals in West Bengal it is the class IV staff who rules and the doctors and senior officials have so say in such serious matter. This incident, which was reported in Anandabazar Patrika on 10th of March 2008, not only reinforced our previous information but to say the least, we were very much disturbed ( In my limited knowledge of English I could not find any other word than disturbed).
Members of Sruti disability Rights centre thought we have to do something now. We got in touch with Anjali, an organization that works specifically on mental health issues and also at Pavlov Mental Hospital. With members of Anjali, we tried to get in touch with Health Department. It was my good fortune that I could talk to Dr. Surjya Kanta Mishra, Minister in Charge, Health, West Bengal over phone. He however refused to give us an appointment as assembly session is on and he is busy. He asked me to write a letter to his department. We tried to get an appointment with Dr. K.K. Bagchi, Secretary to the Health Department also. His P.A. Mr. Pradip Seal informed us that Dr. Bagchi is a very busy person and we may not be able to get his time also. Well, it seems the health department is too busy to ponder over such a non-issue of keeping female mentally ill patients naked within hospitals.
Since we can not keep quite in such a serious violation of human rights of women who are disabled, we are organizing protest march, we are also writing to our health minister, which he requested us to do.
And I would request you to also write protest letters to him in the below mentioned address.
Dr. Surjya Kanta Misra
GN 29 Sector V
Kolkata 700 091
Fax 033 23577910
Department Of Psychology
Jesus and Mary College
Resi:- J12.68 B Rajouri Garden
03/07/2008 - 03/14/2008
A Regina (Canada) woman has been awarded $6,800 for discrimination by the Saskatchewan Human Rights Tribunal on the basis of a disability after she lost her job at a fast-food outlet.
The sentencing of Karen McCarron has been delayed for three weeks. McCarron was found guilty on January 17 of using a plastic bag to suffocate her daughter Katherine ("Katie"), who had autism.
Shirley Cheng, a blind and physically disabled award-winning author and poet, has received The Avatar Award for spiritual excellence for her book Waking Spirit: Prose & Poems the Spirit Sings. It is her fourth award for this book.
Jack Kevorkian, who is an advocate of assisted suicide, says he plans to run for Congress. Kevorkian is on parole since his release from prison last year after serving the minimum of a term for second-degree murder in one man's death. He said he plans to run without party affiliation for the seat now held by Republican Joe Knollenberg, who is running for re-election, he Oakland Press reported Wednesday.
The release of the former Sumter County Disabilities director (SC, WIS), who is accused of sexually abusing three people - two of whom are disabled - over a period of 13 years, has been questioned by the Sumter chief of police.
Students at an Alberta (Canada) school for the deaf suffered sexual and physical abuse, according to a law suit. The law suit is the first of several lawsuits launched on behalf of more than 61,500 students alleging abuse of deaf students across Canada.
The parents of a girl with Down syndrome subjected their daughter to three sets of cosmetic surgery before she was five-years-old because they believe it will help her to fit in with her peers. The parents of another girl are also considering have her appearance surgically altered because they too believe it will help her become "more accepted." Their story is here.
Republican Senator Sam Brownback has teamed up with Democrat Senator Edward Kennedy on a bill that aims to reduce the number of abortions that are tied to genetic disorders.Criminal charges were dismissed this week against a Michigan man accused of raping his 15-year-old daughter. The girl, who has autism, is nonverbal, and used a facilitator to make the allegations.
Thursday, March 13, 2008
Sadly, Newsday.com and The New York Times have reported another story about the sexual assault of a young intellectually impaired woman. In this case, three teenage boys - an 18-year-old and two 16-year-olds - have been accused of forcing a 16-year-old special education student to have sex with them during school hours at one of their homes in Essex County, Montclair, NJ. Each have been charged with 18 counts of aggravated sexual assault.
The girl was treated at a local hospital on Friday and released. It has been reported that she had a "crush" on one of the suspects.
Wednesday, March 12, 2008
The struggle continues! Want to do something about it??? FRIDA has some action requests for you.
First and most importantly, contact Dr. Nancy A. Murphy in Utah to let her know that you think the medical intervention in the case of Ashley X was WRONG. Tell her that instead of Ashley's parents changing her body, they should have sought out community supports and assistive technology. People with disabilities around the world agree that society should change to us---we should not have to be "fixed" for society. Dr. Murphy is the chair of the American Academy of Pediatrics Committee on Children with Disabilities and she plans to talk about the Ashley X case with the committee at the AAP conference in October. We must help Dr. Murphy understand the disability rights position on this issue. Contact her and explain what you think---she seems to be trying to stay objective and get the issue resolved in the medical community, but it will help if she hears from us. If we do not, who will? In 2007, over 90 disability rights groups expressed opposition to what happened to Ashley! You can contact Dr. Murphy at email@example.com or 801-581-9978. You can also call her assistant, Erin Wachs at (801) 581-9978. Dr. Murphy's bio is at http://www.ped.med.utah.edu/GenPeds/biosketches/nmurphy_biosketch.html.
Please contact Art Caplan in Philadelphia and thank him for supporting community choice options in the CNN Ashley X article. His e-mail is firstname.lastname@example.org and his phone is (215) 898-7136. Philly ADAPT had to chase Dr. Caplan down in a hallway to get him to commit to supporting community choice. He is keeping that promise. He is on CNN quite often as their expert on bioethics.
Finally, please comment on the story at the CNN website at http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.angel/index.html by scrolling down to the bottom. Let CNN know what you think! We need disability rights perspectives on there! There are a LOT of comments supporting the parents' decision to intervene on their daughter's body.
Please take some time in the next couple of days to contact these people and protect all our rights to control over our own bodies. Go go go!
As many of you know, last year FRIDA waged a darn large grassroots campaign against the Ashley X case. Ashley's situation aroused an absolute wall of opposition from the disability community, spanning all kinds of disability interests. However, her parents continue to advocate that they did the right thing. We in FRIDA continue to feel that what happened to Ashley benefited the people around her and violated her bodily integrity. This is not even to mention that the law was broken when Ashley's uterus was removed without court permission. None of the intervention was medically necessary. Read on for the parents' take.
Parents of severely disabled "pillow angel" say controversial treatment is success
Girl had hysterectomy, other treatments to stunt her growth
Parents' blog about "Ashley's treatment" created firestorm of Internet debate
Expert: No consensus among doctors on whether treatment isappropriate, ethical
By Amy Burkholder
NEW YORK (CNN) -- It's been a year since the parents of a severely disabled child made public their decision to submit their daughter to a hysterectomy, breast surgery and drugs to keep the girl forever small. Today, the couple tell CNN, they believe they made the right decision -- one that could have a profound impact on the care of disabled children worldwide.
The profoundly disabled girl known as Ashley, now 10, has achieved her full height, 4 feet 5 inches.
"The 'Ashley treatment' has been successful in every expected way," Ashley's parents told CNN exclusively in a lengthy e-mail interview. "It has potential to help many others like it helped our precious daughter."
While unwavering in their belief in the treatment, Ashley's parents continue to insist on anonymity. In the year since Ashley's parents went public, not only did the hospital that sterilized Ashley admit it broke Washington state law, but also the doctor who treated Ashley committed suicide.
As scrutiny of the case deepens, so too does the chasm in the medical community: Is it mutilation, with doctors "playing God" -- or, is stunting growth a liberating option for caregivers and the disabled children who will need constant care for the rest of their lives?
Ashley is now 10 years old and, at 4 feet 5 inches tall, has achieved her full height and weight, 63 pounds. The treatment permanently closed her growth plates and took more than a foot off her anticipated height.
"Ashley did not grow in height or weight in the last year, she will always be flat-chested, and she will never suffer any menstrual pain, cramps or bleeding," say her parents, who felt it important to publicly address their decision after repeated interview requests, in the hopes of sharing their experience with other families.
They responded by e-mail only, to protect the family's identity. (Read the complete interview)
Ashley's current state -- to them -- is the definition of success.
She was born brain-damaged, with a condition described as static encephalopathy, or cerebral palsy. One of her doctors described her mental capacity as that of a 6-month-old, dependent upon her parents to meet every need. She does not walk or talk; she's fed through a tube and wears diapers. When Ashley was 6, her parents approached Children's Hospital and Regional Medical Center in Seattle, Washington, for the operations. They believed this would make it easier to cuddle and carry a child who can do little more than lie propped on a pillow.
Weight and height are the "worst enemy," they write, for children such as Ashley, for whom they've coined the term "pillow angels."
In 2004, Children's Hospital performed a hysterectomy, removed Ashley's breast buds and gave her high-dose estrogen to retard growth and sexual maturation -- a procedure that has risks, but to date has not harmed her, her parents say.
While the "Ashley treatment" was first published in the October 2006 issue of the Archives of Pediatrics & Adolescent Medicine, it wasn't until the family posted its blog last year that a firestorm erupted in the blogosphere, with responses from "inhumane" and "perverse" -- to "walk in our shoes."
"If parents of children like Ashley believe this treatment will improve their children's quality of life, then they should be diligent and tenacious in providing it for them," her parents write. "We have a sacred duty to do what we believe is right for our children."
But in Ashley's case, what her parents thought was right wasn't legal.
In May 2007, Children's Hospital admitted it broke state law by giving Ashley a hysterectomy without a proper court review. To perform any such treatment today would require a court order, as well as review by a panel of experts in medicine and ethics and people with disabilities, says Dr. Douglas Diekema of Treuman Katz Center for Pediatric Bioethics, the consulting ethicist on Ashley's case.
So, will doctors stop the growth of more children like Ashley?
Right now, no growth-attenuation therapy is being administered by other doctors anywhere in the nation, according to Diekema and confirmed by other pediatric experts. Supporters wonder whether another factor, the suicide in September of Ashley's endocrinologist, Dr. Daniel Gunther, may have slowed wider adoption of the treatment.
"We know from reliable sources his treatment of our daughter was a source of energy and motivation for him," Ashley's parents write. "He was frustrated about being blocked from providing this treatment to other children in need. He strongly believed this treatment should be available to them."
The family appears to be the lone voice with that opinion; CNN shared the family's comment with Children's Hospital, but did not get a response. In media reports, colleagues and family members were said to believe Gunther's suicide was not related to the treatment of the girl.
Another complicating factor -- some doctors remain adamant the treatment shouldn't be available.
"Adults can consent. But for a child, we're making decisions for them and hoping in our heart of hearts we are making the right decisions," says Dr. Nancy Murphy, chairman of the American Academy of Pediatrics Committee on Children with Disabilities.
Murphy will push for consensus among doctors at a pediatrics conference later this year, but acknowledges strong discord as critics continue to insist that keeping children small reduces them to a permanent infant-like condition, denying the basic human right to experience an adult body, adult feelings and adult relationships. But for Ashley, that may be moot.
"[This disability] shatters the reason we become parents: to watch kids grow, to be part of their lives and to launch into their own lives," says Murphy. "When you have a child with lifelong dependency, you don't get to launch your kid, and your caregiver options are limited."
But like many other people with disabilities, 43-year-old Anne Rader, who also has cerebral palsy but in a much less severe form than Ashley's, sees the treatment as dehumanizing -- and perhaps most significantly -- irrevocable.
"The parents are not seeing the potential of the child; they are seeing a baby," says Rader. "People with disabilities have to look at the potential of our lives: of available new technology, new equipment, medical advances. Things can change so quickly now."
Ethicists, too, remain staunch in their assessment that the "Ashley treatment" is a violation of not only human dignity, but also of a physician's oath to do no harm.
"I think mutilating surgery involving removal of breast buds is indefensible under any circumstances," says Arthur Caplan, the chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania. "Growth retardation is not a substitute for adequate home aides and home assistance."
Ashley's parents remain convinced what they did for Ashley is the most loving choice they could have made for their daughter and want that for other disabled children.
"We feel that if our time and effort ended up helping a single pillow angel... then it is
Five people have been charged with the murder of Dorothy Dixon, 29, at her Hillcrest Avenue apartment in Alton, Illinois. Dixon, who was intellectually impaired, was six-months pregnant at the time. She has been described by her landlord, Steve Atkins, as "quiet and friendly."
Her death has been characterized by Lt. David Hayes, Alton police's chief of detectives, as "torturous," and possibly motivated by money. According to Hayes, Riley, one of those accused with Dixon's murder, had been taking her monthly Social Security check. Its also been reported by a neighbour that Riley would "punish Dixon by making her run naked" and that she would "pour boiling water and use a hot glue gun" on her.
On way of thinking about this act of violence is in terms of power. What type of power is being expressed here? It might be said that Riley's primary means of achieving personal power was by domination, by gaining power over others. According to the neighbour, Riley also dominated those around her by forcing them to "run her bath water, lay out her clothes and rub her feet at night until she fell asleep."
According to the philosopher Frederick Nietzsche, higher forms of power are not defined by their willingness to hurt others but by their willingness to enhance the feeling of power in others. Hurting others, he argues, is not a sign of having power but of lacking it; it is a sign not of strength, but of weakness.
RIP Dorothy Dixon.
An excerpt from Pantagraph.com
Former occupant Judy Woods, 43, was charged by the Madison County state attorney’s office last month with first-degree murder and intentional homicide of an unborn child in the death of Dorothy Dixon, 29, and her 6-month-old fetus.
On Monday, Alton police announced that five more tenants three of them minors have been charged. They are Michelle Riley, 35; LeShelle McBride, 15; Michael Elliot, 18; Benny Lee Wilson, 14; and a 12-year-old.
Each faces four counts of first-degree murder and charges of intentional homicide of Dixon’s unborn child, heinous battery, aggravated battery and unlawful restraint. LeShelle and Wilson, who are juveniles, are being charged as adults. Each is being held on $1 million bond.
The unnamed 12-year-old will face charges in juvenile court.
Tuesday, March 11, 2008
RIP Kaye O'Bara
Kaye O'Bara, who cared for her disabled daughter, Edwarda, since she slipped into a diabetic coma in 1970, has died at the home they shared in Miami Gardens, Miami. O'Bara, 80, died in her sleep from a cardiac illness that dated back to a heart attack she suffered in the early 1980's.
Kaye O'Bara promised Edwarda as she began to lose consciousness that she would never leave her. As the Miami Herald reports:
those final words to her daughter became the blueprint for her life: turning her every two hours so her daughter wouldn't develop bedsores, feeding her a mixture of baby food and powdered milk through a tube, administering insulin, playing music, reading books to Edwarda, who was once an avid reader, and keeping a watchful vigil by her bedside in the hope that one day her daughter would come to.
"To me, she's almost awake. Sometimes I think I hear her speak," O'Bara once told the Miami Herald. "She says, 'Mom, I'm fine.' Maybe she's not saying anything at all, but I think she's speaking to me."
According to Edwarda's younger sister, Colleen O'Bara, the family will continue to care for her at home.
Rest in peace, Kaye.
Sunday, March 09, 2008
From the Edmonton Sun
The woman alleges that once in late December and once in late January a Disabled Adult Transit Service driver sexually assaulted her in a DATS minivan.
Police have charged a 44-year-old man with two counts each of sexual assault and an indecent act, and one count of sexual exploitation of a person with a disability.
Transportation systems can sometimes leave disabled women more vulnerable, says the executive director of the Alberta Committee of Citizens with Disabilities.
"We've done research papers here on women with disabilities and the incidents of abuse and one of the things that did come up was the transportation system and how it can increase the vulnerability in some cases," said Beverley Matthiessen.
Friday, March 07, 2008
for the week 02/22/08 - 03/07/08
The Winston-Salem Journal reports that the democratic candidate for Governor, Beverley Purdeu, has pledged to seek financial compensation for the victims of North Carolina's now-defunct forcible-sterlization program. More than 7,600 people were sterilized between 1929 and 1974 under a eugenics program operated by the state.
A report just published in the UK claims that adults with learning difficulties often suffer a "denial of fundamental human rights". It claims that the picture in the UK is a "harrowing" one, with adults suffering neglect and abuse, and also finds that the children of parents with difficulties were more likely to be taken into care.The adults interviewed by the committee claimed they had little confidence in the criminal system and raised concerns of disability hate crime.
A man and two youths have been jailed for life for the murder of Brent Martin in August 2007. Martin, 23, who had learning difficulties, died from a massive injury he sustained to his head during the attack. He also suffered at least 18 separate blows to his head and his neck. Brent has been described as a "gentle and caring person" who simply wanted to make friends. RIP Brent.
A British nurse, Colin Norris, has been convicted of killing four elderly women patients by giving them overdoses of the diabetes drug insulin. None of the women were diabetics. The women were Ethel Hall, 86, from Leeds; Doris Ludlam, 80, from West Yorkshire; Bridget Bourke, 88, from Leeds; and Irene Crookes, 79, from Leeds. Norris was also convicted of attempting to kill Vera Wilby, 90, also from Leeds.
Elizabeth 'Betty' Bacon, disability rights activist and former director of Disabled Student Services at San Diego State University, died on February 24 after a brief illness. She was 61. At her retirement celebration in November 2004, members of the disabled community spoke to Bacon's "unwavering commitment to the right of individuals with disabilities, both at the university and in the community."
The sexual abuse of a disabled girl on a Metro school bus in Nasville has spurred legislative action.
A San Francisco supervisor who uses a wheelchair will sue the city after her collegues rejected plans to build a wheelchair ramp to the podium used by the Board of Supervisors president. According to supervisor Michela Alioto-Pier who has used used a wheelchair since she was 13, "The chamber is the people's room ... and if there's a place in the entire city that should be accessible to everyone, it is the chamber."
Parents of children with disabilities attending the Mapaville State School in Jefferson County are pulling their children from class following allegations of abuse and neglect.Haleigh Poutre, now 14 years old, continues to recover at Franciscon Hospital for Children in New England. Haleigh was placed on life support in 2005 after she sustained a severe injury to her brain after being beaten by her stepfather, Jason Strickland. The state was given permission to remove Haleigh from life support in July 2006, but she showed signs of improvement before actions were taken. Plans to remove her from life support were halted. Its been reported that Haleigh is now eating, communicates with a keyboard, and can hold limited conversations. According to court records, she "makes statements alleging abuse" by Strickland, who goes to trial in October.
Wednesday, March 05, 2008
The BBC, with the help of the London charity Disability Action Islington, is seeking disabled women models to compete with each other in a program that will aim, they say, to "challenge the artificial boundaries that seem to exist in the beauty and fashion industry." One negative cultural stereotype that the producers are seemingly not interested in contesting, one group of women excluded from a call that claims to be inclusive, are older women with disabilities: according to the search, women with disabilities 30 years old and over are not eligible to apply!
From the Guardian
The BBC is to launch what it claims is the UK's first TV competition for disabled models with a BBC3 series that aims to find a fresh mainstream fashion face.
BBC3's series, which has working title of Britain's Missing Top Model, will see eight women with disabilities compete over three weeks to prove to a panel of industry experts they have what it takes to be a mainstream fashion model.
The BBC and the show's maker, Love Productions, whose credits include the forthcoming BBC3 series Pramface Mansion, said they hoped the series would "challenge artificial boundaries" in the fashion business and "empower" women.
"Our intention is to empower both the women featured in the project and thousands of others, who shouldn't be invisible to the fashion industry just because they are disabled people," the Love creative director, Richard McKerrow, said.
"We're also looking to challenge preconceived notions of beauty." The BBC3 controller, Danny Cohen, added: "This series aims to challenge the artificial boundaries that seem to exist in the beauty and fashion industries.
"It would be great if in the future we began to see more disabled models gracing the covers of the world's magazines."
The series, which is due to air in the summer, has signed up north London charity Disability Action Islington to act as consultants.
Disabilty Action Islington said in a statement: "Any programme which raises awareness of the barriers that society places in the path of disabled people wanting to pursue their chosen career, that has the ability to challenge negative stereotypes and encourage inclusion is a positive thing."
Producers have launched a search to find women aged between 18 and 30 who "consider themselves to have a disability and believe they have what it takes to work in the mainstream modelling industry" to take part in the programme.
The five-part series will follow the chosen women as they move into a London apartment together and are trained in every aspect of modelling from posing for photoshoots to location work and catwalks.
They will also be set challenges by the show's judges, who will eventually chose a winner who will scoop the prize of a high-fashion shoot with a top photographer in a women's glossy magazine.
The series will be supported by Ouch, the BBC's disability website, which will provide a forum for debate about the issues raised by the show, as well as offering video clips and blogs. Ouch will also host a campaign by BBC Learning on disability within the beauty and fashion industry.
Tuesday, March 04, 2008
It's been reported today that six-month-old Miracletina Nanai - known as Baby Miracle - might undergo her first operation in Miami (USA) this coming Wednesday local time (Thursday AEDT).
All the best, Baby Miracle.
From the Age:
Six-month-old Miracletina Nanai - known as Baby Miracle - was given little
chance by doctors in Samoa but has survived against the odds.
She was born with sealed eyelids, malformed fingers and toes, a severe cleft lip and palate and spina bifida, and is missing the top of her skull.
She is now in the United States, where she may undergo her first operation in Miami on Wednesday local time (Thursday AEDT), said To'oa Kristin Taylor, from Samoa's THORN Ministries, who organised the trip.
She says Miracle has a meningocele, a type of spina bifida in which the spinal cord develops normally but the meninges protrude from a spinal opening.
"The meningocele on her back is the most important one. That is the one that can save her life. If that were to burst then we would lose her. Hopefully that will be done on Wednesday. If not, then soon thereafter," Taylor said.
Doctors initially told the child's parents not to feed the child because she had no hope of survival, but after food was smuggled into the hospital Miracle survived against the odds.
Following international exposure of Miracle's plight, an attempt was made to have her taken to New Zealand for surgery.
That attempt failed when immigration authorities refused her entry, citing a doctors' report that advised Miracle would not be cured by surgery.
But about three weeks' ago Miracle was taken to the United States with her parents Sefulu and Mikaele in a final bid to have the ailments corrected.
"The surgery was scheduled for this Wednesday but she fell ill. We have been trying to nurse her back to health. The doctors will tomorrow decide whether she is able to have surgery on Wednesday," Taylor said.
Taylor said her group was in the process of setting up a MySpace webpage for people to learn about Miracletina and donate money to help the little girl
Sunday, March 02, 2008
Via BA Haller at Media Dis&Dat
A short documentary about the disabled women who attended the 4th World Conference on Women in Beijing in 1995 has become available online. Its called "Disabled Women: Visions and Voices," and it celebrates the experiences and accomplishments of disabled women at the First International Symposium on Issues of Women with Disabilities, the UN Fourth World Conference on Women and NGO Forum. It runs for 13 minutes and was produced and directed by Patricia Chadwick and Suzanne C. Levine, the founder of the National Center on Disability and Journalism.
Its the first time that women with disabilities had an organized presence at the conference.
Check it out.