ADAPT activists win meeting with HHS Sec. Leavitt to work on Medicaid reform

For Immediate Release:

April 28, 2008

For information contact:
Bob Kafka 512-431-4085
Marsha Katz 406-544-9504

http://www.adapt.org

ADAPT Activists Win Meeting with HHS Sec. Leavitt to Work on Medicaid Reform

HHS Staff Affirms that Access to Community is a Civil Right

Washington, D.C.--- 500 ADAPT activists closed off all access to the Hubert H. Humphrey Building, headquarters for the U.S. Department of Health and Human Services (HHS), and kept it closed until HHS Sec. Michael Leavitt agreed to meet with ADAPT on the multiple policies that force people into nursing homes and other institutions, and prevent them from moving back to their own homes and communities.

75 ADAPT members entered the HHS building before security locked all the doors, and presented the ADAPT demands in the initial negotiations with HHS staff.

The demands included:

Meet with leaders of ADAPT within 30 days, with the understanding that access to the community is a civil right that can be improved by the following measures. The meeting can clarify any of the following and identify other barriers to home and community based services in all 50 states;

Improve the implementation of the Money Follows the Person Demonstration Projects by increasing the flexibility states have;

IMMEDIATELY eliminate any rules that cause undue burdens regarding case management;

Eliminate any rules that discourage small grassroots providers, like Centers for Independent Living and other non-profits, from meeting the needs of the consumers they serve;

Eliminate any regulations and interpretations of spousal impoverishment and risks that promote institutionalization of persons with disabilities;

Work with ADAPT to pass the Community Choice Act (S 799 and HR 1621).

People need to be able to choose to live in their own homes, near their families and friends, said Dawn Russell of Texas ADAPT. Families shouldn't be torn apart by mean-spirited Medicaid policies and regulations that force some people into nursing homes or even to leave their homestate in order to get the community-based services and supports they need.

After a six hour standoff, Philo Hall, Counselor to Sec. Leavitt, committed to Leavitt meeting with ADAPT within 30 days as he addressed the crowd in the pouring rain. He began by acknowledging that access to the community is definitely a civil right. Then Hall admitted that HHS has fallen behind in its former regular communication with ADAPT, and acknowledged that the lack of communication has contributed to HHS making some not-well-thought-out decisions that have hurt the disability community. Renewed communication will begin immediately with another meeting between ADAPT and HHS staff on Wednesday, April 30.

You know, President Bush's first Executive Order was the New Freedom Initiative, which ordered all federal departments to remove barriers to full community participation for people with disabilities," said Bob Kafka, National ADAPT Organizer. "We've been making slow but steady progress until the past couple of years when it seemed like the Medicaid folks forgot the President's order and started reinstituting policies that will push people back into institutions. We're hoping that after today HHS will work with us to reverse the current trend, and assure older and disabled Americans can live full lives in their community.

"If you add the number of unreported cases of elder abuse it could be staggering"

A mother and a son charged with leaving their 86-year-old grandmother "covered in filfth and sores" appeared before a Clark County (Nevada) judge on Monday. But according to this article, this case is "just part of an overwhelming problem, one that has Clark County investigating about a thousand cases" of elder abuse and exploitation each year.

Experts claim that elder abuse "is a hidden problem that may be more prevalent and under-reported than spousal abuse

That's according to this disturbing story in the Times Union (Albany, NY).

It reports on the "death by neglect" of Beth Adams, 78, by her daughter, Carol Adams, 47. Beth Adams was found inside her Albany home on January 16, 2008. She was "frightfully emaciated and dead from profound malnutrition," it is reported. Carol Adams has been charged with second-degree manslaughter, criminally negligent homicide and an endangering the welfare of a vulnerable elderly person.

It's been claimed that the abuse of the elderly may be more prevalent and more under-reported than spousal abuse because victims "are fearful of retribution, in denial, embarrassed or too disabled to speak up." For every one report of elder abuse, an estimated five go unreported.

ADAPT Takes over HHS Building in DC with List of Demands

Click here to read Justice for All's coverage of the ADAPT direct action in DC today, and use the link for JFA updates on the action during the week.

The action is to call attention to the need for radical change at the Department of Health and Human Services HHS, particularly as it pertains to the institutional bias in the administration of Medicaid benefits and the result of thousands of people with disabilities being forced into and kept in nursing homes and other institutions against their expressed wishes to live in their homes and communities.

"How do You Keep a Social Movement Alive: Why We Can't Wait"

That is the title of a post at Document the Silence, which suggests wearing red on April 30, 2008, partly in observation of Sexual Assault Awareness Month (SAAM).

Here is an excerpt:

In Defense of Ourselves: Be Bold Be Brave Wear Red on April 30, 2008.

We understand that April is Sexual Assault Awareness’ Month. In conjunction with the wearing red to end sexual assault, we will also wear red to represent the many types of violence that women of color endure and how these various types of violence are interconnected.

Similarly, as well as wearing read on April 30 to draw attention to the ongoing reality of sexual abuse and assault, women with disabilities might also wear red to represent the many forms that violence against women with disabilities takes. And wear red also in memoriam of those, such as Dorothy Dixon, who have died because of it.

To read more about the objectives, history and themes of Sexual Assault Awareness Month, go here.

ADAPT's 25th Anniversary of Activism

For Immediate Release April 27, 2008

For information contact: Bob Kafka 512-431-4085
Marsha Katz 406-544-9504
http://www.adapt25.org/

ADAPT is in the House! 25th Anniversary of Activism Starts with Fundraising Run; Press Conference on Tuesday.

Washington, D.C.--- 500 bright orange vests lit the drizzly, grey Washington, DC, day as ADAPT members from nearly every state in the Union did fundraising laps around Upper Senate Park warming up for a week of activism and the celebration of ADAPT's 25th anniversary. The funds raised will support activists living on fixed disability and retirement incomes to participate at ADAPT actions confronting the people in power who makepolicy and law about their lives.

The national honorary runner for the fundraiser was Marca Bristo, award winning President and CEO of Access Living in Chicago, IL; a founder and former President of the National Council on Independent Living; and a former Chairperson of the National Council on Disability, appointed by President Bill Clinton. Donors interested in sponsoring Bristo's laps can still do so at http://www.adaptfunrun.org/.

ADAPT is in D.C. to advance the Community Choice Act (CCA), legislation that would allow older and disabled people to stay in their own homes with the supports and services they need instead of being forced into nursing homes and other institutions. The CCA (S. 799, H.R. 1621) is bipartisan legislation introduced simultaneously in the United States Senate and House of Representatives. ADAPT activities this week will target people and organizations that continue to create barriers preventing people with disabilities from living full, rich lives in their own homes and communities, near their families and friends.

On Tuesday, April 29, ADAPT will also hold a press conference announcing the country's "Ten Worst" and "Ten Best" states for community-based services. There will be an additional five "honorable" mentions for the best states and five dishonorable" mentions for the worst states. ADAPT's"Ten Worst" and "Ten Best" are announced every few years and represent a"snapshot" of how the states compare with one another in that year. All selections are made using easily available data from trusted public sources of information and one national survey.

ADAPT will conclude a week of activism with a 25th anniversary celebration on Thursday, May 1. Several rooms of historical displays will be open to the public at the Holiday Inn Capitol, 550 C Street, starting at 10 a.m.

Frida feminist-disability links

for the week o4/18/2008 to o4/25/2008

A Suffolk (NY) special education teacher has been charged with sexually abusing a 5-year-old boy with autism and his 7-year-old brother in their home, Newsday reports. The man, who has pleaded not guilty, is charged with six counts of first-degree sexual abuse, two counts of endangering the welfare of a child, two counts of second-degree aggravated harassment and one count of first-degree harassment.

Toronto taxi companies are charging passengers who use wheelchairs more to ride in accessible cabs than is legally allowed, according to the CBC.

Wakako Tsuchida, Japan, has won the women's wheelchair division in the Boston Marathon, and Ernst Van Dyk, South Africa, has won the men's. It is the second time in a row that Tsuchida has won the race, finishing nearly 5 minutes better that her time last year. It was Van Dyk's seventh victory.

Linda Pickle, who worked at the Center for Research on Women with Disabilities at Baylor College of Medicine, has died in Houston. Pickle, who was 71, was left almost completely paralyzed following a severe case of polio at age 16. Amongst other things, Pickle is remembered as an outgoing, cheerful person who worked hard for the disability rights movement. RIP, Linda Pickle.

The rights of people with intellectual disabilities in Australia are being ignored "through abuse, the lack of individual plans, and the lack of individual care," according to this report from the Age.

In Moscow, people with disabilities "simply live in a world apart."

Police are investigating the alleged rape of a female patient by a male patient inside the Delaware Psychiatric Center

Hymes over at Charlottesville Prejudice raises some important questions about this case, where it is alleged that a female patient at the Delaware Psychiatric Center has been raped by a male patient who also had consensual sex with another female patient; all three patients are being screened for HIV and other sexually-transmitted diseases.

This also happens to female patients in state hospitals in Virginia, but, according to Hymes, it doesn't get covered by the media. What female patients in Virginia's state hospitals need, she argues, is the option to choose a single sex ward. To read Hymes post in full, go here.

"Looks like an interesting subversion of the traditional beauty pageant, and there are further plans for a similar project in Cambodia"

This is Feminist Philosopher's take on the recent beauty pageant in Angola for survivors of exploding landmines left after decades of civil war. To read the post in full, which includes a link to a BBC report about the pageant, and to alternative viewpoints about it, see here.

More on the KEJ Case

From an e-mail to the Disability Rights Consortium, by Equip for Equality's Legal Advocacy Director, Barry Taylor:

As you may recall, Equip for Equality has been representing a woman with a traumatic brain injury and other disabilities to oppose her guardian's petition to have her involuntarily sterilized. Yesterday, the Illinois appellate court upheld the lower court's decision that our client should not be sterilized. This is the first appellate court in Illinois to rule on this issue, establishing an important precedent...

The court first identified two fundamental rights at issue in this case - the right to bear children and the right to bodily integrity. As you'll see, the court characterized sterilization as a "severe restriction of fundamental rights" that "deserves careful scrutiny by the courts." The court also adopted procedural due process safeguards that judges must undergo in sterilization cases. Unlike other states, Illinois has not addressed this issue legislatively, so these safeguards provide important guidance to judges on how future involuntary sterilization cases should be handled and make it clear that guardians cannot pursue sterilization of their wards privately, but instead require judicial oversight.

The court also upheld our request that the guardian's attorney not be paid fees for the appeal that would have come out of our client's estate. The appellate court also ordered the lower court to re-examine the over $100,000 in attorneys fees paid out of our client's estate to the guardian's attorney. In doing so, the appellate court adopted a cost benefit analysis that future judges will have to perform, which we believe will significantly reduce the possibility that a ward's estate will be depleted.

Thank you to Equip for Equality and to KEJ!

Walking the Line: Guardians Ad Litem and Disability Rights

Disclaimer for all readers: I am not a lawyer and the following is not legal advice. We at FRIDA do not provide legal services, though we are lucky to have lots of friends with JDs. If you have questions about guardians ad litem for a court proceeding concerning a person with a disability, please contact your state's Protection and Advocacy Agency (see http://www.ndrn.org/) or your state's Office of the State Guardian (for Illinois see http://gac.state.il.us/osg/). That being said...

Over the past couple of years of watching the KEJ case go through the throes of resolution, I find that a key player in protecting the rights of people with disabilities who are under guardianship is the guardian ad litem (GAL for short). A GAL is not the same as a guardian. Some folks will be familiar with a GAL as the person who is appointed by the court to represent the interests of minor children during a divorce case. A GAL (see http://en.wikipedia.org/wiki/Legal_guardian) is a person the court appoints to represent the interests of an involved party in a particular proceeding. A GAL for a person with a disability who has a legal guardian is someone that the judge appoints to represent the disabled person's interests at court. A GAL is supposed to be someone who is independent and not influenced by the desires of the court or the legal guardian.

Lawyers, if I am wrong, feel free to step in here on the definition.

Anyway, my point in bringing this up is that the GAL is not often discussed in the general disability rights/independent living movement as a player who can help us achieve equality and access. In the KEJ case, I see a lot of blog discussion about the rights of the ward and the rights of the guardian and how to deal with disabled parents and who should do the work of parenting and so on, but I see nothing to tell me that society at large understands the role of the GAL. All of these issues are valid and of great concern, but who is the GAL, anyway? Who trains them? How do they end up with access to our adults with the greatest legal dependency? How do courts select them? What are their caseloads like (how many clients, how many hours each)? Are probate judges aware of the types of knowledge that we in the disability rights and independent living movement take for granted? In Illinois, are GALs aware that our state is number one for institutionalizing people with developmental disabilities and dead last in funding home and community based services? What's up?

Striving to understand GALs across disabilities is extremely important because one simply never knows when one may be considered legally "incompetent" enough to need a legal guardian...and who knows if the legal guardian will actually work towards your best interests? Granted, I would think most legal guardians take their roles seriously and honestly strive to make good decisions, hopefully with their ward when possible. However, the fact is that some guardians do not act in the best interest, and sometimes that is because they are not aware of some of their ward's basic human rights, or they do not see honoring those rights as feasible for their realities.

The Convention on the Rights of People with Disabilities (CRPD) was recently ratified by 20 member countries of the UN. Among the tenets of the CRPD is the right to bodily integrity. I am happy that KEJ's right to bodily integrity will be preserved, but I am angry that it had to be contested and that generally a lot of people feel that that issue should stay in the doctor's office. For the sake of human people's lives, it cannot. We must discuss it. And we must have a more visible dialogue about the roles of the legal players in our civil rights struggle.

Finally, why should the issue of the GAL concern those working for women's rights and those who are feminists? The GAL certainly challenges parental prerogative. I think what is critical is to provide all possible training to GALs on all possible support options and all perspectives on peole with disabilities. The GAL, in my view, needs to be someone who is prepared to recommend meaningful choices to/for the ward---and choice, as we know, is of key concern for feminists. It is also paramount for disability rights folks. Doesn't that show that we are, after all, the same?

More on the KEJ Case

The KEJ case (described below in Linda's post) has been of significant concern to FRIDA members since it was first reported in 2005. I wanted to add some details that were not included in the story so as to round out the picture.

First, KEJ's cognitive disabilities stem from a traumatic brain injury she sustained as a child in a car accident, in case this has not been clear.

Second, although Equip for Equality is named only as a "disability rights group" in the Tribune story, it is the Illinois state protection and advocacy agency, with a federal mandate to safeguard the rights of people with disabilities. In winning the appeal on behalf of KEJ, EFE is basically doing its job in protecting KEJ's civil rights. That alone deserves recognition. As a society, we do not recognize the victories of P&As as much as we should.

Third, a really big question still hangs in the balance: who pays for the guardian's legal fees in this case? Does the guardian have to pay, or does the money for these proceedings have to come completely out of KEJ's trust? Believe it or not, apparently the guardian is reportedly within her rights to have brought the original petition for sterilization before the court, and at least partly because of that, the money appears to have to come out of KEJ's trust, never mind that right now the cost is reportedly over $100,000. The decision on the final amount has gone back to the trial judge. I feel that in having had her intentions/will contested by her guardian, KEJ has been victimized and will be forced to pay for a proceeding that was never her idea to begin with. This is ridiculous.

The problem is: can legal processes be regulated so that guardians seeking to take care of their ward's health can be able to complete the necessary legal proceedings, but should their actions contradict the stated wishes of the ward, can the ward not be financially penalized? Can legal regulations be posed in such a way as to absolutely ensure that only sterilizations that are medically necessary are performed? This last question has consumed the thought and energies of a number of disability rights and guardianship advocates in Illinois.

So, the decision regarding payment of legal fees will be interesting to learn.

Hopefully within about a week, the appellate court opinion will be made available online so that the public can review the details. I think it will be well worth reading.

In my view, the most valuable aspect of this case is that it has been made at all public. This is a significant issue affecting many people with disabilities and their guardians, especially women but also many men. Dealing with the sexual and reproductive lives of people with disabilities is something that society must discuss out loud WITH independent people with disabilities, wards, AND guardians.

Relegating the issue to the confines of the doctor's office covers up how significant the issue really is and how many people are affected. The secrecy also fuels stereotypes, for example: that people with disabilities are burdensome and must be "managed," that people with disabilities are too vulnerable for sex, that people with disabilities can be sexual monsters, and that people with disabilities cannot be parents.

I realize that there are folks with very severe disabilities whose guardians will emphasize that their wards are not capable of any kind of judgment. However, a) humankind's ability to judge lies on a vast spectrum of apprehension and b) I don't think American society's ability to deal with folks of many different disabilities is very sophisticated. We're first graders, at best. Remember first grade?

An Illinois judge has denied a petition to sterilize a woman with intellectual disabilities

From the ChicagoTribune

Disability rights advocates and medical ethicists praised a precendent-setting ruling Friday by the Illinois Appellate Court denying a bid to sterilize a mentally disabled women against her will.

The woman, identified only as K.E.J. in court records, isn't capable of raising a child on her own, but her guardian failed to prove that sterilization would be in her best interests, a three-judge panel in Chicago ruled.

.... The ruling was the first appellate opinion on the issue in Illinois.

"Its extraordinarily significant" because it guarantees the disabled a court hearing, said Katie Watson, a Northwestern University professor who wrote a friend-of-the-court brief in the case on behalf of two dozen medical ethicists.

"In the past, this was a decision that could be made between a guardian and a doctor," she said. "The decision must be moved into the light."

The ruling means a guardian must go through some "significant legal hoops" before a court will order sterilization, said the woman attorney, John Whitcomb of Equip for Equality, a disability rights group.

Read the article in full here.

FRIDA feminist disability links

for the week 4/11/2008 to 4/18/2008

In a disturbing story from Virginia, two women with disabilities, both of whom use a wheelchair, have testified that they were sexually abused by their van driver. Their male driver, who transported one of the women to adult daycare and the other to work, has been accused of sexually abusing each of the women on several ocassions.

A Scottish (UK) woman with learning difficulties living in council care, who was sexually assaulted over a period of years, was "failed by the justice system" according to a damning report released by the Mental Welfare Commission in Scotland.

Two Westport educators who face charges stemming from the alleged abuse of a 6-year-old special needs child are scheduled to return to court June 6. Ms Lind Liberty, 46, a teacher's assistant, is charged with two counts of assault and battery on a intellectually impaired child, and Ms. Renee Rego, 47, a special needs teacher, is charged with being a caretaker who wantonly commits or permits the abuse, neglect or mistreatment of a person with a disability. Their lawyers have described the accusations as baseless.

Police and the commonwealth attorney's office are investigating multiple cases of reported elder abuse at Ruxton Health of Williamsburg, Virginia.

Quebec MP Francine Lalonde, 67, is pushing ahead with plans to force the House of Commons to relaunch the debate on assisted suicide. Her bill would amend the Criminal Code to allow, under specific conditions, seriously ill people to end their lives.

The 12-member women's wheelchair basketball team that will represent the United States at the 2008 Paralympic Games in Beijing, China, this fall was announced last Saturday. Twenty-one wheelchair athletes from all over the country took part in the week-long selection camp, held at the U.S. Olympic and Paralympic Training Site at the Lakeshore Foundation.

Here is a link to information and a review about the new TV movie about the deaf, hearing divide called "Sweet Nothing in My Ear." It airs April 20, 2008, 9-11pm ET/PT on CBS.

"It is my hope and desire for all people who struggle with reading to get to know their favorite author too."

For readers interested in educational adaptive devices and assistive technologies and optimising their integration into the curriculum for children with disabilities, you might want to read Cilla Sluga's thoughtful post called "Reading Wonders" at her blog Big Noise. Cilla identifies a number of problems with how educators and rehabilitation professionals presently deliver assistive technologies to children with disabilities and argues they need to transform the way they teach so as to keep pace with the technology revolution.

Here is an excerpt:

I talk to parents almost daily in my work with a state assistive technology program. The stories are all frustratingly similar. They have a child failing all subjects; he/she reading level is years behind their peers. They receive no support other than a resource room teacher that helps them read words, asks the child questions about the materials, and then they send homework home, where parents and the child spend the evening in frustration and tears. As the child falls further behind, he/she gets labeled as lazy, unmotivated or a bad kid.

That little binder of colored overlays hits very close to my own home. When one of my daughters graduated from high school, she read at a 7.5 grade reading level. A 6th grade reading level is functionally illiterate. Despite that, she wanted to go away to college like her peers and sisters. With a little research and luck we found a community college that focused on student supports and assistive technology services for students with disabilities. In one semester, with a purple overlay, they raised her reading level from grade level 7.5 to 11.5. She still uses it; and it has dramatically changed her life.

What was once painful is now pleasurable. It increased her ability to study and improved her quality of life. In short, she became a reader. What is most remarkable about her story, for me her mama, is she has read enough to know she has a favorite author.

Whether it is a colored overlay, or a book on tape or other technology adaptation, it is my hope and desire for all people who struggle with reading to get to know their favorite author too.

Hundred of employees have mistreated residents of Texas facilities

From the Associated Press article in the Houston Chronicle

More than 800 employees at Texas’ 13 large facilities for the mentally and developmentally disabled have been suspended or fired for abusing residents since fiscal year 2004, state officials said Tuesday in response to an open records request from the Associated Press.

......... The revelations come a month after Gov. Rick Perry’s office confirmed that the civil rights department at the U.S. Department of Justice is investigating allegations of abuse and neglect at the Denton State School, the state’s largest with about 650 residents. It’s at least the second such investigation into state facilities, including one at the Lubbock State School in 2006 that revealed widespread abuse.

An advocate for people with disabilities called the number of employees disciplined “stunning.”

“It indicates to me that there is clearly a culture of abuse or neglect in these facilities,” said Jeff Garrison-Tate, president of San Antonio-based Community Now. “The bottom line is people are getting really injured, and they are not safe,” he said.

"Strong Love" is Bonnie Burt's new documentary about the lives of lovers, Holly and Jon, both of whom have Down syndrome

The filmaker Bonnie Burt has asked me to pass on some information to readers about her new documentary film called "Strong Love."

This is how Bonnie describes the film:

Strong Love is the story of world-class weight lifter Jon Shapiro and his childhood sweetheart Holly James, both of whom were born with Down syndrome. This documentary follows the couple over the course of three years, starting with their decision to get married. Their challenges, their triumphs and their complex, sometimes suprising relationships with family and friends are at the heart of this inspiring film."

The film highlights how much things have changed since the 1970's ... and also shows what happens to developmental delays over time.

The film runs for 56 minutes. According to a recent review from Down Syndrome News, "some scenes will make you cry, others will make you laugh. All in all, it's a picture of life full of suprises, challenges and joy."

There is also a study guide being developed.

More information about the documentary, and a trailer you can watch, is available here.

FRIDA feminist-disability links

04/04-2008 to 04/11/2008

This story about Juliana Cumbo, who has just applied, for the second time, to get an acupuncture license, comes via Cilla Sluga at Big Noise. Cumbo, who is 31 and has been blind since she was 10-years-old, was rejected in October 2007 by a committee of the Texas State Board of Acupuncture Examiners after earning a master's degree in acupuncture and Oriental medicine and passing the national board exams.

San-Francisco supervisor Michela Alioto-Pier, will launch a law-suit against City Hall if it does not resurrect plans to install a wheelchair ramp to the board president's elevated speaking dias. Alioto-Pier, 39, is the first supervisor to use a wheelchair. Critics of the plan argue that it is too expensive. However Alioto-Pier and disability rights groups argue that wheelchair users should have access to the elevated perch 'just like everyone else has throughout the city's history."

According to the San Francisco Chronicle, California is closing the Agnews Developmental Center in San Jose, a state institution that has housed thousands of people with developmental disabilities for more than a century. The closing marks part of a philosophical and legal shift away from institutional care, and is said to be one of the most complex and costly mass moves every undertaken. Its residents are being moved into homes scatttered in neighborhoods around the region.

A British woman who convinced her son and his doctor that he needed to use a wheelchair, and got a doctor to prescribe unnecessary medication, has been sentenced to four years in prison for child abuse, the United Press International reports.

Advocates are worried about the growth of the population of people with intellectual impairments in Texas, according to the Lubbock Avalanche Journal.

A 31-year-old woman, who lost part of her leg when she stepped on a landmine, has won the title of Miss Landmine Angola 2008. The aim of the pageant, according to organizers, is to portray disabled women with dignity and to raise awareness about the prevalence of landmines left in Angola following its 30 year civil war.

Sex and Disability Video Clip Link

GO SEE THIS.

OK, so our favorite girls with disabilities group has a promo clip on YouTube for their film Doin It: Sex, Disability and Videotape. Go check it out at: http://www.youtube.com/watch?v=Vwlwe9Juo6E. It's captioned and you'll enjoy yourself.

Those Darn Doors...

Earlier this week I wrote about wanting to see more women with disabilities knocking at the front door of power. I wanted to clarify that in fact what I would like to see is more women with disabilities engaging in direct action, and a recognition of the women doing this kind of work in a united sense. I would like to see women with disabilities in more positions where we are the ones setting the context of the power game, not just playing by established rules.

The question seems to be: why is direct action important, and what do we want, anyway? Also, what context am I talking about?

In reverse order:

The context I want is for in all situations, our concerns to be taken seriously. We are not to be dismissed, and in fact FRIDA and our friends have a tremendous pool of knowledge about issues affecting women with disabilities. I want people to know that they can tap into this knowledge by working with FRIDA. I want a context of respect and I don't think we're going to settle for anything less.

This leads to what we want---we want solid evidence of change (in my opinion anyway). I want to be able to go to the emergency room and have an interpreter available so I can understand what is happening to my body. I want the laws in my state amended so that the reproductive rights of people under guardianship are protected and their persons preserved without undue harm. I want meaningful sex education provided to every kid with a disability (you'd be surprised how many don't know what "clit" means. I want Congress to pass the Commuity Choice Act, and fund it! and regulate it! Oh, to hell with "want"---we NEED these things!

So how do we get them? Why is direct action important? There are people working on policy change through legal venues. There are support and information networks. Folks write to their elected officials and such. However, I think that until WE are at the table sitting down with decisionmakers, we will always be treated like pigs or cows being herded around from pen to pen. Direct action is whatever it takes to get to that place---if lobbying and collaboration works, fine, but if needed we can and WILL get the attention of power brokers through obstruction of their daily business and influencing their attitudes. In doing this, bias and discrimination will expose themselves---just as Martin Luther King noted--and we as righteous human beings will prevail.

So my challenge to those of you reading this post is this: go and look at the concerns that folks brought up at the Sex and Disability Town Hall. What do we need to DO? The issues that people brought up affect their daily quality of life. What do we need to have good lives? What do we need to change or create? And...what are you willing to do to make sure we get it?

"The Memory Keeper's Daughter" airs on TV this weekend

From the Washington Post:

For readers interested in disability films and representation: the best-selling Kim Edwards novel, "The Memory Keeper's Daughter," has been adapted as a movie and will air on the Lifetime Channel on Saturday, April 11, at 9.00pm. If you miss it, you can catch it again on Sunday evening at 8pm.

In keeping with the book, the film is about the birth of twins, one of whom has Down syndrome, and the father's rejection of the baby with Down syndrome. Following her birth, he tells his wife the baby has died and instructs a nurse to take the baby to an institution. However, the nurse impulsively decides to raise the child as her own, and moves to another city so as to build a life for herself and the girl, whom she names Phoebe. Although the father is emotionally destroyed by his decision, it inadvertently gives his daughter with Down syndrome a good life, because Caroline, the nurse who raises her, becomes a disability advocate for the rights of her child.

The movie, which was filmed in Halifax, Nova Scotia, includes actors with Down syndrome, and is getting strong reviews from critics. For more details about the film and links to a trailer and interviews, check out BA Haller's post over at her blogspot Media dis&dat. You can read the full review in the Washington Post here. To go to the "Memory Keeper's Daughter' official web-site, click here.

THIS FRIDAY...
get pampered and get informed as you support the biggest Empowered Fe Fes event ever!
The Empowered Fe Fes are a support/action group for young women with disabilities up to age 24. Check us out at www.myspace.com/empoweredfefes

Friday, April 11
open from 4:00-8:00pm
At Access Living
2nd Floor conf. room
115 W. Chicago Ave
Chicago, IL

$5-$15 at the door

services available from the fefes themselves:

manicures
foot soaks
massages
facials

make your own bathsalts
chat it up with the amazing fefes
learn about valuable resources in the community

see you there!

The Doorbell is Ringing! Who's at the Door?

Stuff I found out (where has this info been?!?!):

The Women With Disabilities Educational Program (see www.womenwithdisabilities.org) is designed to improve healthcare access and to educate medical professionals about women with disabilities. Right on! Better bookmark it.

The policy agenda of the National Council of Women's Organizations is kinda...well, I don't see disability in it much. Check it out at http://www.womensorganizations.org/index.php?option=com_content&task=view&id=16&Itemid=45. What's up over there?

NOW (National Organization of Women) has dropped the ball on women with disabilities. See http://www.now.org/issues/disability/index.html. All the stuff is cool...but is at least three years old. There's a fantastic quote from Stephanie Thomas of ADAPT though:

"Who lives in a nursing home? She is over 60 with disabilities. Who is paid to provide long-term care? She works for minimum wages with no benefits. Who performs this work unpaid? She is young — she cares for her mother, her father, an older family member. Or she is old herself and cares for a spouse, a sibling, a child, perhaps still for a parent. One of these women will be you."

We looooooooooooove you Stephanie. A lot. And I didn't know you had a quote on NOW!

I visited the Feminist Majority website (see http://feminist.org) and saw an action alert for "affordable, accessible birth control." Naturally, I was all oooooh oohh ohhh!!! But yeah, they didn't mean accessible like we mean accessible...there's over-the-counter accessible and there's crip-accessible, OK? They have a thing about sports and women with disabilities, and while that's fine, there really isn't much else that's disability specific. You'd have to dig.

Oh, and I looked at the National Women's Law Center. Nothing really disability specific there either. See www.nwlc.org. Hmm. Nothing about sterilization isses for women with disabilities, even. Wonder why...

What I want is not to shoot down women's orgs for being disability-exclusive, but rather, to point out that a lot of the bigger women's organizations, RIGHT NOW, just don't have disability issues on their radar (especially as opposed to a few years ago!)...and that's a problem because there's stuff happening that's affecting 28 million of us women with disabilities in the US. I mean, what's going on? What do we need to do here? We have lots and lots of talented women with disabilities working to make things right, and that's good...I know some people prefer working back door channels, the quiet way. But while everybody's at the back door, WHO IS RINGING THE DOORBELL AT THE FRONT?

(I hope you're thinking of yourselves!!)

Ecuador ratifies UN Disability Rights Treaty, triggering entry into force as a legally binding international treaty

From the United Nations News Service

Ecuador has become the 20th country to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and Optional Protocol, thereby triggering the treaty's entry into force.

In 30 days, the UN Convention will be binding international law for all states that have ratified and will give persons with disabilities in these countries a powerful legal instrument to defend their rights.

"It is a historic moment in our quest for the realization of the universal human rights for ALL persons, creating a fully inclusive society for all," said UN Secretary General Ban Ki-moon.

Read the full report here.

FRIDA feminist-disability news links

03/28/2008 - 04/04/2008

The Tennessee Department of Human Services is investigating allegations of abuse at a Johnson City home for intellectually impaired adults.

A British Conservative councillor has resigned after suggesting euthanasia as a way to cut the cost of caring for special needs children. He was already suspended over the remark made last week.

A nursing assistant was charged with abusing two intellectually impaired adults at the Gulf Coast Center of Fort Myers. It is alleged that she kicked the residents for not complying with her directions.

Seven Florida nursing home residents have filed a class-action lawsuit against the state of Florida under the Americans with Disabilities Act. They say the state’s Medicaid program is biased toward institutional placements, and want the right to determine where they live.

Police have charged an Edmontan man with assaulting a woman with cerebral palsy. The woman, a city playwright and scholar, who uses a wheelchair, underwent surgery for stab wounds to her shoulder and also suffered broken bones.

Women's shelters in Ottawa (Canada) are so full they are turning women away. Women with disabilities are having a particularly hard time finding a shelter that can accommodate their needs.

An employee of Patton State Hospital has been arrested on suspicion of sexually assaulting a mentally ill female patient in late January. Hospital officials declined to place the man on leave pending the outcome, opting instead to move him where he can't interact with patients.

Jemma Leech, a ten-year-old student at Mark Twain Elementary School in Houston, has won first place in the 16-and-under category of the prestigious "Write Up Your Street" competition. Jemma, who has cerebral palsy, beat more than 1,600 entrants in the essay writing contest.

From the Chicago Tribune, a major profile of the violin prodigy Rachel Barton Pine. Pine, who is acclaimed as "one of the most accomplished violinists of her generation,” is performing regularly again following an accident in 1995 that severed one of her legs and shattered the other.

Karen McCarron sentenced to 36 years in prison

Karen McCarron has been sentenced to 36 years in prison for killing, on May 13, 2006, her daughter, Katherine "Katie" McCarron, the Peoria Journal Star reports.

McCarron was convicted of two counts of first-degree murder for suffocating Katie, one count of obstructing justice and one count of concealment of a homicidal death. A request for a new trial was denied, and she will have to serve all of her sentence. According to her attorney, McCarron has not yet decided whether to appeal.

Katie McCarron was autistic and three-years-old when she died.

In a videotaped confession to police, McCarron told them she could no longer deal with the difficulties of her daughter's illness.

Before being sentenced, McCarron read from a handwritten statment, saying "I have no words for the loss of Katie. I am compelled to say I am sorry to my friends, family and to the State of Illinois,” the Pekin Times reports.

There is more about Katie McCarron's life here (at Autism Vox).

Additional details about Karen McCarron's sentencing are here and here.

Walmart drops effort to seek reimbursement for the cost of caring for a former employee

Wonderful news for the family of Deborah Shank: Wal-Mart is dropping its controversial effort to collect the moneys they paid for her medical care and treatment following a car accident in 2000.

According to the The Wall Street Journal, the retailer said in a letter to the Shank family on Tuesday that "Ms Shank's extraordinary situation had made the company re-examine it's stance" and that the case had made Wal-Mart revise its rules to "allow for flexibility in individual cases."

Wal-Mart had been widely criticized in newspaper editorials and on cable news programs for its claim to the funds, which it made in a lawsuit that was upheld by a federal appeals court.

As noted in an eariler post, Shank, 52, who paid her health insurance through Wal-Mart where she worked stocking shelves, lost much of her memory and her ability to communicate and walk following an accident between her minvan and a tractor trailer in May 2000, and now lives in a nursing home. Walmart was seeking reimbursement for the moneys they paid for her care after she received a settlement from the trucking company involved in the accident.

"I would just like to let them know that they did the right thing. I just wish it hadn't taken so long." Debbie Shank's husband, Jim, said, upon hearing of Wal-Mart's reversal.

Yep, Wal-Mart, it was a good thing thing to do.

Read more here and here.

Remembering Terri Schiavo

From The Tampa Tribune Herald

Three years ago yesterday, Monday March 31, Terri Schiavo, age 41, died in Pinellas Park, Florida, almost two weeks after doctors removed her feeding tube.

Family members and friends of Schiavo are calling for a day of remembrance to mark the anniversary of her death, and have declared March 31 "Terri's Day."

"We want Terri's day to remind us that persons with disabilities are never burdens and should be treated with nothing by our unconditional love and compassion," said Schiavo's sister, Suzanne Vitadamo, in a statement.