Piss On Pity, Piss On Pity, Piss On Pity

Q: When is "compassion" a bad thing?

A: When it's blatantly condescending, hostile, ugly, narrow-minded and a total hypocritical LIE.

Labor Day is coming up. Are you thinking what I'm thinking? Yep, it's time for the annual MDA telethon, hosted by none other than the perennial asshole named Jerry Lewis.

What, you think he's not an asshole? Please. The man has pointed, in person, to friends of mine who are power chair users and have MD, and said in effect, "These people are faking it. I bought them those chairs." No, Jerry, they aren't faking it and you didn't buy them their frigging chairs. They aren't dead either. Jerry has also labeled a colleague of mine, in the presence of 500 people, a "human mattress." Yes, Jerry Lewis displays saintliness in earthly form and I am the reincarnation of Thomas Jefferson (oh wait, Jack Kevorkian thinks HE'S the reincarnation of Thomas Jefferson).

The fact that Jerry Lewis has for years begged and cried crocodile tears to raise $$$$$ for the MDA is unbelievable. Year after year, a good segment of the American public throws money at the MDA under this jerk's hosting. They ignore the jerk and think their money's going to a good cause. Frankly, people, that's not really true. Would you go to a church headed by a minister who takes advantage of small children? Oh wait, that sounds a LOT like the MDA!

That's really Jerry's number one crime: exploiting and psychologically raping little kids, in the name of C*O*M*P*A*S*S*I*O*N (I'm trying to convey "compassion" before the footlights). What do I mean, he exploits little kids? Don't you just wanna throw money at those poor cute little crippled squirts who just wanna cure? What do I mean, he's a psychological rapist? It has gone down on record that kids with MD, when they watch the Telethon, think that they're gonna die! Hell, everybody dies, but I wouldn't want the messenger of the afterlife to be a fake, mean has-been named Jerry Lewis. I think it's even creepier that the same messenger could take the form of a small child.

The MDA organization itself has some serious problems, and I'm not really referring to finances or anything Enron-esque. I'm talking about the way they deal with the opposition (meaning Jerry's Orphans and friends). Jerry's Orphans has been around since 1990 and since that time, MDA staff haven't done a very good job of learning how to deal with activists (and I'm not gonna pop any secrets here, but if you think about it for ten minutes you could come up with a logical solution for dealing with activists who want you to change things for the better).

Remember when Hurricane Katrina hit? The MDA Telethon aired right in the aftermath. Jerry's Orphans wanted to stick to their guns and protest the segment of the telethon airing from Chicago. To make a long story short, we zipped into the hotel at about 11 pm at night and made our way upstairs *almost* to they were filming. They were ready for us...and they blocked us off with some tables...we're pushing at them and chanting, they're pushing at us with tables. And then, they whip out some secret weapons to sit on the tables and make sure we don't get through....high school boys. Yes. Teenagers, who don't know who the hell we are and are a little freaked out by the crips. I guess the MDA doesn't know when to stop using children, cuz that kind of practice ain't youth-friendly.

The top MDA staff absolutely refused to even negotiate with us halfway. We were there for *hours* while staff treated us like children and refused to make any moves that effectively would add up to solid change. Some folks might say, "Well, but you were scaring them; what do you expect?" The truth is this is a fight that's gone on for YEARS...and the MDA is still using pity to rake in dough. The activists have already tried the nice stuff, and nobody listened.

We're fighting pity not just because it's a feeling that makes us feel all squirmy and naked and grossed out. We're fighting pity because it hurts people. It takes away their dignity. It damages kids. It exploits people for others' gain. Pity is something that's indefinable in a way. Can't put it in a jar. But pity is a known tactic that is used by social organizations like the MDA and social personalities like Jerry Lewis. Pity is real. Pity hurts.

Jerry Lewis, as so many have said for so long, needs to go. He lies, he lies, he lies. And the MDA needs to show more respect for people with disabilities, end the practice of the telethon (come on folks, you can be CREATIVE fundraisers!), and focus on making sure we have real lives just as we are, not the lives that might happen if we are cured.

*Oh, and just for critical thinkers out there: maybe you think I'm blatantly condescending, hostile, ugly, narrow-minded. That's up to you. But I do not lie.

In memory of Janet Frame
poet, novelist, memoirist
born August 28, 1924
died January29, 2004

Janet Frame was born 28 August 1924, in Dunedin, New Zealand, and died on January 29, 2004. She spent four and a half years out of eight years in mental hospitals. Although she was given a diagnosis of schizophrenia, it was later rejected by doctors in London. Her mother had given doctors approval to do a lobotomy, but this was cancelled after her first book - The Lagoon and Other Stories - won a prestigious national award.

The story of the torment and brutalising treatment she experienced during her stays in psychciatric wards, including hundreds of electric shock treatments, is well known. Her novel Faces in The Water is a fictional account of some of those experiences.

In her lifetime, she published eleven novels, five collections of stories, a volume of poetry and a children's book. The Jane Campion film An Angel at my Table is an adaption of Frame's much celebrated autobiographical trilogy, written just before she turned sixty.

To read Penny Richard's post about Janet Frame at Disability Studies, Temple University, go here.
The Janet Frame Estate Home Page is here.

Largest International Euthanasia and Assisted Suicide Symposium

will be held in Toronto on Friday, Nov 30th, Saturday, Dec 1, 2007.

"Nearly every leader and significant speaker on the issues of euthanasia and assisted suicide will be attending the International Symposium on Euthanasia "Current Issues and Future Directions" to be held Friday, Nov 30th, Saturday, Dec 1, 2007 at the Four Points Sheraton - Toronto Airport Hotel.

Organized by the Euthanasia Prevention Coalition - Canada and co-sponsored by: Co-Sponsored by: Euthanasia Prevention Coalition - Canada, NOT DEAD YET - USA, Compassionate Healthcare Network - Canada, Physicians for Compassionate Care - USA, Vermont Alliance for Ethical Healthcare - Vermont, Care NOT Killing Alliance - UK, No Less Human, UK."

The list of speakers include:

- Margaret Somerville, the founding director of the McGill Centre for Medicine, Ethics and Law
- Dr. Peter Saunders, the director of the Care NOT Killing Alliance in the UK
- Dr William Toffler, the national director of Physicians for Compassionate Care in Portland Oregon
- Dr. Bob Orr, the director of the Vermont Alliance for Ethical Health Care
- Diane Coleman, the founder of NOT DEAD YET, a leading disability rights group in the US
- Stephen Drake, the research director for NOT DEAD YET
- Allison Davis, the national co-ordinator of No Less Human in the UK
- Hugh Scher, legal counsel for the Euthanasia Prevention Coalition and the former chair of the Council of Canadians with Disabilities Human Rights Committee
- Alex Schadenberg, Executive Director of the Euthanasia Prevention Coalition in Canada
- Rita Marker, Executive Director of the International Task Force on Euthanasia and Assisted Suicide
- Wesley J. Smith, attorney for the International Task Force on Euthanasia and Assisted Suicide
- Bobby Schindler, brother of Terri Schiavo
- Catherine Frazee, co-director of Ryerson University (RBC) Institute for Disability Studies, and the former chair of the Ontario Human Rights Commission (1990 - 95)
- Bert Dorenbos, leader of Cry for Life in the Netherlands
- Cheryl Eckstein, founder of the Compassionate Health Care Network in Canada
- Dr. Paul Byrne, Neonatologist from Ohio and a recognized expert in the area of Brain Death
- Dr Mark Mostert, an expert on the Nazi T4 - euthanasia program.

See here for more information about speakers, cost and registration.

Thanks to Ruth at Wheelie Catholic for the link.

Frida Feminist-Disability Links #2

Links to a jumble of things to peruse in the press and blogosphere:

. Legal bid to remove a feeding tube from woman is dropped :

"In a surprise move, attorneys representing a La Crosse family asked a judge for a dismissal of their motion to remove a feeding tube from a woman who is not terminally ill and not dying... "

. The New Orleans nursing home deaths trial begins Thursday, and is expected to last 3 to 4 weeks.

. See here to read about Sheila Drummond, a blind woman who has hit a historic hole-in-one. Drummond, blinded by diabetes 26 years ago, recorded an ace on the 144-yard, par-3 fourth hole at Mahoning Valley Country Club.

. A woman sentenced to life in prison for setting the fire that killed her 26-year-old disabled son still insists she is innocent.

. Via the New Times, a story by Paul Rubin about the apparent assisted suicide of mentally ill woman by members of an assisted suicide outfit called the Final Exit Network. To read Wesley-Smith's comments about the case, go here.

. North Texas Behavioral Health Authority investigates "horrific" board and care homes for people with mental illness in Dallas.

. Writhe Safely remembers psychiatrist Ronald Laing, who died 18 years ago today (Sunday 19 August).

Deafness, Disability and Frank Bowe

I wanted to add a few personal comments to Linda's postings on Frank Bowe, who passed away a week ago today. Thank you to Linda for posting the items by Cheryl Heppner and Hofstra University.

I grew up in the shadow of the 504 sit-ins (and what later became IDEA as well). Section 504 was finally signed into law in 1977. I was born in 1978. 504, like a big gray ghost, informed almost my entire public school experience, and yet I didn't know a thing about it until I was 19.

My second college job was working as a student assistant in the Bancroft archives at UC Berkeley on what is now known as the Disability Rights Movement collection. This collection includes the papers of such folks as Ed Roberts, Judy Heumann, and Patrisha Wright. One of the very first things I had to do was read about the movement in order to get a feel for what was historic in people's donations. And one of the first things I read was about the 504 sit-ins. I'd had no idea people with disabilities had pulled off this action. And, I'd had no idea that a Deaf person played a role in organizing it. That really blew my mind. I tucked away the name of Frank Bowe then and there.

It's been ten years since I worked in the archives, and I've done an awful lot of disability and non-disability related things since then, but I always thought that someday I had to bump into Dr. Bowe. I've gotten to know a bit more of his story over time (and check out Heppner's story elsewhere on this site to learn more).

Straight up, Dr. Bowe's life and work is one of my inspirations for my work in the disability rights movement. As a Deaf/hh person (those of you know know me know I have some label angst...some Deaf say I'm Deaf and others say I'm hh and still others say hh with a Deaf heart! a topic for another time), Dr. Bowe's example helps me maintain my faith in the importance of cross-disability work, and the need for it not only on a local level but on the national level as well. There ARE Deaf and hard of hearing people who support and work within the disability rights movement in vitally important ways, and yet they often go unrecognized, or held apart because of their deafness or what is perceived as cultural separateness. I strongly believe we are NOT separate and that there remains huge potential in a well-developed alliance between the Deaf community and the organized disability rights community.

In addition, Dr. Bowe's example demonstrates to me the impact that a Deaf person can have in the disability rights community. When someone who is Deaf looks at me funny and says, "Ohhh, so you don't just work with Deaf people...?", I want to shout, "I work with all people who are oppressed under the disability label!!" And then I want to point out how incredibly rich my life is for knowing and working with a tremendously diverse cross-section of society, and how thankful I am for that, and how hard we must all fight to achieve the radical revamping of society that is needed to achieve true equality. I think Dr. Bowe would have understood that.

Dr. Bowe's work also reminds us all of the power of information in advocacy work. Knowing the research, crunching the numbers, confirms what we all know by gut instinct and real-world tears: disability discrimination exists. To those in our movement who research and compile reports, I want to take a second to thank you, because your work helps us all tear down the walls.

Finally, picture this: it's 1977. Dr. Bowe is in the midst of helping to organize the Section 504 protests across the country. There is no e-mail, no text, no video relay. Just interpreters, typewritten mail, huge clonking TTYs and off-the-cuff friends to help the average deaf person get information. And still he ORGANIZED, because being Deaf was less of a barrier than not being recognized as a full human being in America, and when you are working for that, nothing is too hard, nothing is impossible.

Farewell to Frank Bowe (March 29, 1947-August 21, 2007)

By Cheryl Heppner, 8/23/07

Within minutes of arriving at the TDI conference, I learned thatDr. Frank G. Bowe had died earlier in the day at the age of 60. His death is a stunning blow for advocates of people with disabilities. Frank was at the forefront of many of our majorpieces of disability legislation.

Frank was one of my role models and I will miss his wise counsel. I always felt a connection with him because we both became deaf at a young age, had roots as journalists, and were drawn to the disability rights movement. I met him for the first time 25 years ago. He was my version of a rock star! Our paths have crossed manytimes since, and during the past two years I worked with him on several advocacy projects that included attempts to make broadband more widely available and affordable, and the successful DVD captioning lawsuit by Russ Boltz.

I searched the Internet for something that could begin to justiceto Frank, and finally settled on an entry about him in Wikipedia. Here are excerpts:

"Dr. Bowe was the Dr. Mervin Livingston Schloss DistinguishedProfessor for the Study of Disabilities at Hofstra University. As a disability rights activist, author, and teacher, he has strung together a series of firsts:

"Dr. Bowe was the first executive director (CEO) of the firstnational cross-disability consumer advocacy organization, theAmerican Coalition of Citizens with Disabilities (ACCD). TheCoalition's signature achievement was securing the long-delayedimplementation of Section 504, the world's first civil-rightsprovision for persons with disabilities. Bowe conceived and led the nationwide protest that led to issuance of landmarkregulations for Section 504 in 1977. A year later, he wrote the first full-length text on social policy and disability,Handicapping America (Harper & Row). In 1980, Dr. Bowe was the first person with a disability to represent any nation in the planning of the United Nations (UN) International Year of DisabledPersons (IYDP-1981). Today, many countries are represented in keyUN committees by persons who themselves are individuals with disabilities, including 14 who are, as Bowe is, deaf.

"In the mid-1980s, he chaired the U.S. Congress Commission on Education of the Deaf. COED made 52 recommendations for improving education and rehabilitation, many of which have had long-lasting effects. What is not well-known about that work is that he was, in1986-1988, a highly visible chairperson who was deaf and who appointed deaf persons as COED staff director and chief counsel.COED issued a public draft of its final report in January 1988. The example he and COED set was not lost on the students at Gallaudet University across town when, in March 1988, they launched their famous Deaf President Now protest.

"Section 504 led, in 1990, to the Americans with Disabilities Act. That same year, Dr. Bowe was the principal architect of theTelevision Decoder Circuitry Act, which was sponsored in theSenate by Tom Harkin (D-IA) and in the House by Ed Markey (D-MA).The act requires that TV sets receive and display closed captions.The 1996 Telecommunications Act took it a step further, mandating that broadcast and cable programs themselves be captioned. Morerecently, in 2005 and 2006, Bowe gave invited testimony before theU.S. House of Representatives Committee on Energy and Commerce and conducted demonstrations of high-speed broadband communications for both the House and the U.S. Senate.

"Dr. Bowe's textbooks are in use at colleges and universities around the country and in several other nations. Making InclusionWork (Prentice Hall) and Early Childhood Special Education(Thomson Delmar Learning) are two examples. He is also author ofUniversal Design in Education (Greenwood Publishing), of the encyclopedia entries on deafness and disabilities in Scholastic'sNew Book of Knowledge, and of several hundred articles inprofessional journals in public policy, special education,rehabilitation, and technology.

"In Disability in America 2006, a policy paper addressing healthcare, employment, and entitlements, Bowe outlined disabilitypolicy goals for 2006-2008. Disability advocates concerned abouthealth insurance coverage for individuals with disabilities whocould work are excited about the possibilities he suggests.

"Frank earned his doctorate at New York University, his master'sdegree at Gallaudet University, and bachelor's degree at Western Maryland College. He was awarded an honorary Doctor of Laws byGallaudet University and he appeared in many Who's Who publications. He was selected as an Outstanding Scholar of the20th Century and received a Distinguished Service Award fromPresident George H.W. Bush in 1992. Frank always thought big picture. He wanted to change the world.He had a vision for what it should become and the principles andwork ethic to keep pushing that vision. "America handicapsdisabled people." he wrote.

"And because that is true, we arehandicapping America itself." America has lost a lion but there ishope that the cubs inspired by his work will grow stronger.

SOURCE: Northern Virginia Resource Center for the Deaf and Hard ofHearing Persons (NVRC)
...................................................

Press Press Release: Hosfra University

Hofstra University Mourns the Loss Of Dr. Frank Bowe, LongtimeProfessor And Renowned Champion of People with Disabilities.

Hofstra University, Hempstead, NY - Frank Bowe, Ph.D, LL.D, aprofessor of counseling, research, special education andrehabilitation (CRSR) in Hofstra University's School of Educationand Allied Human Services, passed away on August 21, 2007. He was60 years old. He had served on the faculty since 1989 and held theDr. Mervin Livingston Schloss Distinguished Professorship for theStudy of Disabilities. In 2005, 2006 and during the spring of2007, he served as acting chair of Hofstra's CRSR Department.

Dr. Bowe was a nationally recognized champion for the rights of people with disabilities and a highly regarded and prolific researcher in this area. On the Hofstra campus he was celebrated for his excellent teaching skills and for being a professor whobrought warmth, humor and unwavering dedication to the classroom.

"Dr. Bowe was a prominent scholar and advocate for Americans with disabilities, as well as a caring and outstanding teacher," saidHofstra President Stuart Rabinowitz. "There are many Hofstraalumni and current students who credit Dr. Bowe with opening theireyes to the rewards of teaching and of working with special needsstudents. In 1996 he won the University's Distinguished Teaching Award, an honor based on the recommendation of graduating seniorswho regarded the opportunity to study with Dr. Bowe as atransforming experience."

"Frank Bowe will be missed very much by his students, our alumni and his colleagues. He set an example of compassion and excellenceto which we should all aspire."

Dr. Bowe received a Ph.D. in 1976 from New York University; an M.A. in 1971 from Gallaudet University; and a B.A. in 1969 fromWestern Maryland College. Before joining the faculty at Hofstra, Dr. Bowe served as a regional commissioner of the U.S. Department of Education's Rehabilitation Services Administration. From 1984to 1986 he was the chairman of the U.S. Congress Commission onEducation of the Deaf.

Dr. Bowe is perhaps best known for his leadership as executive director of the American Coalition of Citizens with Disabilities from 1976 to 1981. He was the organization's first executiveofficer, and provided crucial direction during the nationwide sit-in regarding Section 504 of the Rehabilitation Act in 1977, theworld's first civil-rights provision for persons withdisabilities, which eventually led to the American Disabilities Act, passed in 1990.

In 1980 Dr. Bowe, who was deaf, became the first person with a disability to represent any nation in the planning of the United Nations International Year of Disabled Persons. For more than two decades Dr. Bowe had been a consultant to the U.S. Congress on a variety of issues. In 1992 he received the Distinguished Service Award from the President for his lifetime achievement. In 1994 hewas inducted into the National Hall of Fame for People withDisabilities. He is also credited as one of the architects ofprovisions in the 1996 Telecommunications Act that have greatly enhanced the quality of life for Americans with disabilities.

Dr. Bowe's teaching at Hofstra focused on inclusion, technology in education and meeting K-12 special needs students. Outside theclassroom, he tirelessly researched how all of society not justschools can better accommodate people with disabilities.

His latest study, released in September 2006, revealed that Americans with disabilities the nation's third largest minorityare the least likely of any population within the country toachieve the American dream. Dr. Bowe reported that more than aquarter of this demographic live in poverty (75% earn less than$20,000 annually) and fewer than half have private healthinsurance. His research found that many adults with disabilitiessubsist on Social Security Disability Insurance (SSDI) andSupplemental Security Income (SSI), and although the monthly funds received from those programs provide barely livable wages, the benefit of Medicare and/or Medicaid is something this populationcannot do without.

Dr. Bowe also examined education in this study and found thatdespite measures to level the playing field, educational opportunity for students with disabilities and those without isnot parallel. While the typical 9-year-old would be in the 4thgrade, a 9-year-old student with disabilities is more than half likely (61%) to be in the third grade. Among high school students,the vast majority of 15-year-old students with disabilities are not with their same age peers in the 10th grade but in 9th or 8thgrades.Dr. Bowe authored another paper that was released in 2005 by Rep. Fred Upton (R, MI), chairman of the Subcommittee onTelecommunications and the Internet, Energy and CommerceCommittee, U.S. House of Representatives. The paper, titled Two-Way Technologies: A History of the Struggle to Communicate,explored how people who are deaf, who are blind, who have cerebralpalsy, or who have mental retardation have communicated over thepast 40 years and how public policy (federal laws, orders of theFederal Communication Commission, etc.) has alternately led andlagged technology.

Dr. Bowe had a deep impact on his students and maintained closeties with many of them after graduation. He was truly aninspiration to students, fellow faculty and public officials. He is survived by his wife, Phyllis, and daughters Doran and Whitney.

Ruben Navarro: important issues that must be discussed

Although coverage of the Ruben Navarro case has quitened down, at least until September 12, which is the day transplant surgeon Hootan Roorokh will be arraigned, Steven Drake from Not Dead Yet reminds us in this post that there are several key issues that must be discussed, issues that to date have been neglected by journalists and bio-ethicists.

Here is an excerpt:

Meanwhile, there are several important issues demanding discussion, but no bioethicist or journalist we can find is discussing them (thanks to Cilla Sluga as a source for more than one of these important questions):

1. Was Ruben Navarro really dying? In the wrongful death complaint brought by Navarro's mother, she claims the hospital told her that the hospital had a limit of five days for coma patients being on a ventilator? Could Ruben Navarro have experienced some level of recovery if he'd been given longer than five days? Is this claim true? How did she come to believe that? What does that mean about her "consent" to having his ventilator removed?

2. Can we trust the coroner's report? Cilla Sluga reports thata betadine solution administered into Navarro's intestines is toxic when taken internally. Navarro lived for hours after the alleged overdoses of ativan and morphine. Did the betadine kill him?

3. Why was no one else in the room charged with a crime? The medical professionals in that room all had a duty to prevent harm from being done to a patient. How did the medical review boards come to a decision that neither the attending physician nor the nurse who administered the injections did nothing wrong? Could they tell us what the heck they did right? What does this tell us about the medical profession's ability to police itself and discipline its members for misconduct?

Also, check out this archived episode of WBAI's "The Largest Minority," in which Steve and Cilla Sluga discuss the Navarro case.

And listen on-line to, or download, Disabled Los Angeles Man Put Down for Organs ?, a show that Steve did last week.

News I'd prefer not to print

Reports in the news yesterday about the beating of an autistic woman by employees of a Long Island group home. It is said that the 50-year-old woman was beaten with a wooden coat hanger and a shoe, slapped in her head, and kicked by two, possibly more, employees of the home. The attack was captured by a camera hidden in a vent.

Read the full story here .

The director of the home comments here.

Kristina Chew at Autism Vox has a post about it here, along with some comments.

In memory of Christe Reimer

On August 14, 2007, Christe Reimer, aged 47, died after her husband, it is said, kissed her, then threw her over a fourth floor balcony.

Christe, according to this report, had been seriously ill for some time. Amongst her numerous disabilities, Christe was partly blind, had uterine cancer, and weighed only 75 pounds. According to her caregiver, she could barely walk at the time she was killed. According to her sisters, nonetheless, she was "doing well."

Her husband, Stanley Reimer, who has been charged with second-degree murder, has said that he killed his wife because he was desperate. According to court documents, he was desperate because he could not afford to pay the bills for treatment for Christe's neurological problems and cancer. In other words, he seems to be saying, there was nothing else he could do.

But Cilla Sluga, an advocate for the rights of people with disabilities, does not think so. In her post about this case, Stanley's desperation, no matter how extreme, no matter what the circumstances, does not - can never, never will - justify Christe's murder. In any case, Cilla points out, there were alternatives - she wonders why, for example, he didn't declare bankruptcy or become an advocate for universal singler payer health care. And then again, he could have drawn the legislature's attention to his situation.

No, Cilla argues, there were - always will be - options. As she sees it, the death of not only Christe but of others - too many others, among them Ruben Navarro, Emilio Gonzales, Edith Rodgriguez, Katie McCarron - who have been murdered, abused, neglected by family members or medical staff, is not a story about the country's healthcare crisis, as some believe. "It is about a man who murdered his wife because she got too expensive and became too much of a burden to him," she believes.

In closing her post, Cilla argues that activists and advocates for people with disabilities must do more than document and yell about neglect and murders by medical staff and families. She proposes that we take this conversation out of our communities and into the streets, and scream out against the abuses and killings of people with disabilties "by the people they should trust the most."

But whose street do we head for, whose house - is there only one - and what do we say when we get there? At whom and what will our words be pitched at? Stanley Reimer, apparently, kissed Christe before throwing her over the balcony. He kissed her then threw her. Kiss and throw. Throwing Kristie, then, is not everything he thought. The kiss, it seems, is also significant. It marks a disruption of sorts. An alternative to the throw. A disturbing reminder, perhaps, of another way of being, in relation to Christe. A reminder that it could have been otherwise.

FYI, Cilla Sluga and Steve Drake talk about the Ruben Navarro case on WBAI: "Largest Minority."

Here's the URL:http://archive.wbai.org/files/mp3/070816_110001tlm.MP3

There are segments before Cilla and Steve come up, maybe a half hour or so. It's well worth listening to, they did a great jobs covering and raising a range of disability relevant points. I learned that one nurse *did* object to the drugs being administered to Ruben Navarro...and Cilla, a LPN who worked in an oncology unit in her previous career, points out that noone tried to reverse the effect of the drugs after Ruben did not die within the 30 minute window, raising the question of whether Ruben might still have survived with proper treatment...

Update on Martin Harnett

As of late last night, Martin Harnett was doing a lot better but needs to undergo one more surgery to remove some excess tissue in his lungs. Then hopefully he can recover a bit more and go home. Our thoughts are with you, Martin!

Martin's family thanks everyone for their good vibes and Donna says the good wishes help uplift their spirits. Many thanks to those in our community who have reached out to Martin and Donna. If you would like to e-mail a note, send it to ddeh@msn.com. It will make a difference.

FRIDA feminist/disability links #1

Links to a jumble of posts and reports in the press and blogosphere:

A CBS article about a police report that says Ruben Navarro was prepared for organ donation even though his doctor “believed he wasn’t a good candidate for donation.” According to the report, his doctor noted on Ruben's chart that weaning him off the respirator would be counterproductive because his drive to breathe and his heartbeat were still intact.

A post from Violet at Reclusive Leftist about why forced electric shock is a feminist disability issue.

ABC News report about a trial that will begin Monday 13 August for the owners of a nursing home where 35 people died in flash flooding during Hurrican Katrina. The owners of St. Rita’s Nursing Home are they only individuals charged with being responsible for deaths during the storm, and face 35 counts of negligent homicide and 24 counts of cruelty to the elderly or infirm.

Is this Love? Is this progress? Not according to this commentary by Hymes about a recent editorial in the Philadephia Inquirer that argues people with mental illness who are homeless should be forced into the modern equivalent of Workhouses and should be refused food by church groups unless they come of the street.

A review by Daniel Goldberg about a special exhibit called “Medical Ethics and the Holocaust” that is been sponsored by the Holocaust Museum Houston, September 7, 2007 – February 3, 2008.

Here is a link to a blog for the ADA Restoration Act of 2007. The Act now has a total of 181 cosponsors, which is still 37 shy of the 218 needed for a majority vote.

Thinking of Martin Harnett

Some of you may recall that at the FRIDA/ADAPT/NDY protest last January, we were accompanied by 11 year old Martin Harnett and his mom Donna. Martin has severe disabilities and but for his family circumstances, could very easily have been another Ashley X. His photo at the action was printed in papers across the US. Martin's family actually created a website called "Martin's Treatment," as an antidote to the Ashley site that called for more "Treatments" to be visited upon kids with disabilities. See http://martintreatment.spaces.live.com/. This family has a lot of guts and we really appreciate them.

This past weekend, Martin, his folks, his brothers and their dog were enjoying a picnic in a forest preserve when Martin's trach managed to rub a hole through his airway and into one of the three main arteries right above his heart that leads to his head. He essentially began bleeding to death. However, through the quick actions of his parents and a local emergency room, he was saved. He is now recovering and his family really could use some messages of support. Donna says:

"Dr. Mark Gerber is a hero. He called the helicopter transport team at Children’s’ in Chicago, convinced St. Catherine’s hospital to send him to Chicago instead of Milwaukee where they wanted to send him because it was closer, and he assembled a team of 20 in the OR which included one of the best cardiovascular surgeons in the country all within about an hour. They cracked open Martin’s chest, located the hole in his artery and airway, and put him back together again. He needs everyone’s prayers now. He had 7 units of blood, his aorta has an infection, he has a tube draining out the blood from his chest, he is swollen from receiving so much blood and on a respirator. But as far as the surgeon and the PICU staff are concerned he looks really good right now considering what he has been through.

We consider everything about this a miracle. We were told that 95% of the time this happens the child bleeds to death. If not immediately, it usually happens while everyone is trying to figure out what is going on while in the ER. We were blessed in how everything worked out but he has a lot of healing to do.

We have been informed that Martin runs the risk of the infection taking hold, a stroke, a hemorrhage, and many, many other issues. Please pray for us. Please send us love, light and blessings both for Martin to heal and have strength. Martin is fighting for his life and wants to be here, otherwise he would have died last night.

Please also pray for all of us that witnessed a very traumatic event that has affected us all."

Donna, Jeff, Nolan, William and Connor
You can e-mail them at ddeh@msn.com.

Thank you all.

AMA Journal Doc-to-Doc Exchange

Thanks to a heads up from Emi Koyama of Portland, Oregon, FRIDA has learned that the June edition of the Archives of Pediatric and Adolescent Medicine (APAM) features a letter exchange in their "Pediatric Forum" section, which is basically like letters to the editor but allows for authors of articles to respond to letters. The APAM is published by the AMA but maintains that it is editorially separate from the AMA.

The letter exchange addresses the omission of Ashley X's breast bud removal in the original APAM article on Ashley X in October of 2006 and whether the article was misleading as to the intentions of Ashley's parents and doctors. Here goes:

From the Archives of Pediatric and Adolescent Medicine Volume 161, June 2007, The Pediatric Forum:

Only Half the Story:

The authors of the article “Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma” discuss the ethics of inducing intentional growth stunting to facilitate the care of a child with developmental disabilities. However, according to TIME magazine, these authors are telling only half the story. In their article in the Archives, they discuss administrating high-dose estrogen to fuse the child’s epiphyses and limit growth. However, the TIME article also states that the child’s breast buds were surgically removed to decrease the chance of her developing fibrocystic disease or being uncomfortable with her rehabilitative equipment. She also underwent a hysterectomy to prevent problems in the future related to menses. Thus, it appears as if the child’s family did not merely wish to limit her size to facilitate taking care of her; they also wanted to infantilize her and remove any evidence of puberty and maturation. In this they were aided and abetted by their physicians. The argument that menses would be messy or that she required a prophylactic mastectomy for fibrocystic disease cannot seriously be considered as medical indications for her surgery. If so, why not also do a colostomy and urinary diversion to facilitate nursing care? Why not do a prophylactic appendectomy to prevent potential episodes of appendicitis?

I consider this article, with its emphasis only on the ethics of height reduction, to be very misleading.

Carole L. Marcus, MBBCh

Correspondence: Dr. Marcus, Pulmonary Division, Children’s Hospital of Philadelphia, 5th Floor Wood, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104 (marcus@email.chop.edu).

(***Note from FRIDA: the TIME article Marcus refers to is the January 11 article titled “Pillow Angel Ethics” by Nancy Gibbs. Gibbs published two stories on Ashley X, one from the parents’ standpoint and one from the disability community’s standpoint, essentially bisecting the dialogue and keeping both sides well away from one another.)

***

In Reply

Carole Marcus suggests that because we did not discuss the patient’s breast surgry, our article told only “half the story” and was therefore misleading. We would respectfully disagree. The purpose of reporting this case was to focus attention and debate on the practice of attenuating growth in children with severe developmental disability as a strategy for improving the quality of their lives. There are many aspects of this patient’s medical care that do not directly bear on this issue and were not reported. The hysterectomy was included in the discussion only because it was directly relaed to the complications of estrogen treatment. The medical rationale for hysterectomy is well covered in the article. Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation (as was the incidental appendectomy that was performed).

These several different medical and surgical interventions were each done for different reasons and were considered to be separate requests. Lumping them into a monolithic “Ashley Treatment” is a convention of the parents and the media, not her physicians. The exclusion of breast bud removal fro our discussion should make clear that we do not consider that procedure to be a necessary or routine part of growth attenuation therapy.

Finally, we would also disagree that the motivation of these separate medical and surgical interventions was to “infantilize: the patient and remove any “evidence of puberty and maturation.” It was certainly not a motivation of anyone involved with the decision. The motive was always improving the quality of this child’s life. While this patient will remain short (4’6” [1.4 m] is hardly infant size) and will not develop adult female breasts, she will continue to produce estrogen and mature normally.

Daniel F. Gunther, MD, MA
Douglas S. Diekema, MD, MPH

Correspondence: Dr. Gunther, Division of Pediatric Endocrinology, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way NE, Seattle, WA 98105 (dan.gunther@seattlechildrens.org).

***

What do you all think of this? Please recall that the APAM declined to print a similar letter from FRIDA, stating that they had decided to publish other articles with similar content.

In my personal opinion (not officially speaking for all of FRIDA here, though certainly speaking as a person working to see concrete social change come out of the problems brough up by the Ashley case), while I am encouraged that the APAM deems the Ashley X issue of enough importance to make the editorial decision to publish the above exchange, and that the APAM's publishing of the exchange will continue to push medical professionals to think about the rights of all human beings, I am bothered by some items in the response from Seattle.

Is health care really a simple matter of so many various small requests to fix this and that? Who is really responsible for understanding the whole picture of the care of any person (as opposed to just the care of people who are unable to communicate for themselves)? Are all of the pieces of the puzzle simply not meant to be pulled together for some greater meaning? This is a bit a la carte here.

In addition, let's remember a couple of other things. Seattle Childrens' WAS the subject of an investigation by the state Protection and Advocacy agency on the case of Ashley X. The hospital did fail to make sure that her legal rights were not protected and so the hospital is now supposed to be complying with a settlement agreement regarding sterilization and the rights of people with disabilities.

Furthermore, Seattle Childrens' pediatric bioethics center hosted a one day conference on the Ashley X issue alone, and the issue was also brought up in last month's pediatric bioethics conference. Clearly there is an effort to get the air clear on whether what was done to Ashley was the right thing to do, and to get people thinking about how to make good decisions.

I think that for Ashley's doctors to step back from the fray and essentially say, "Hey, we were only fulfilling some requests," when in reality they have been embroiled in legal and ethical clean-up, is misleading. Granted, this whole exchange may have been written quite some while back given APAM editorial and printing deadlines, but this, to me, is the big deal:

A society that says it's ok to medically alter someone's body to support what is seen as the average accepted lifestyle norm is not a society that respects people.

Some people may find that perspective hurtful and not respectful of folks (like parents and docs) who want to do the best thing possible. I fully accept that people are well-intentioned, but I firmly believe that we can all together give this whole boat of pain a U-turn and instead work towards building the kind of society that is inclusive of the people that we naturally are (not our altered selves).

In my (again, personal) opinion, I think there are effective action steps that we can take towards making things better. We as a society need better cooperation between the medical community and, well, the rest of us. We need better legal protection and oversight. We need more meaningful public dialogue about disability and medicine. We need more MONEY to protect health care and support community choice. We need meetings, forums, appointments, workshops, conferences, bill-writing, media education, disability inclusion in medical education, and most of all we need PEOPLE who are dedicated and willing to work hard to make these things happen. Some folks already are and I applaud them.

I encourage those who read this blog to post your thoughts. If you don't say them, we won't know what you're thinking. I say that with lots of of FRIDA love, but with total FRIDA seriousness.

Amber Smock

Update on the Pad Patrol

We had an anonymous request from someone to provide an update on the Pad Patrol. The latest is that yes, we are still collecting pads and getting them to women who live in nursing homes and institutions. Mainly the women that FRIDA members know of are women who are clients of the CIL where we work.

Federal Medicaid regulations mandate that those on Medicaid who live in institutions or nursing homes receiving federal dollars get what they need in the way of personal toiletries, i.e., toothrbrushes, toothpaste, shampoo...pads and tampons (usually pads, especially for those who cannot do tampons independently).

There are a few angles to this problem that need to be laid out for the public. The first is that nursing home and instition residents live under a system and climate of fear and oppression. If anyone gets out of line, they fear bureaucratic retaliation or getting kicked out. So, nobody wants to speak out publicly about not getting pads, in case they get in trouble. This issue is huge. HUGE. It is why we do not yet have an effective public spokeswoman on this problem.

Second, people have asked why this problem doesn't get reported to, for example, a state ombudsman. I'm not sure how things work in every state, but in Illinois, there is a state ombudsman to report problems to...but they work for the Department of Aging. They can only really work to resolve problems affecting senior citizens. If you think about it, most senior women aren't having their periods any more. So that leaves those who ARE havin periods out in the cold.

Third, people have asked why the women not getting pads don't just sue. Part of the problem with that is because of the two issues above. But also, part of the problem is that women are sitting in their dried, caked blood NOW and litigation takes a lot of time. So the Pad Patrol tries to alleviate the immediate problems. There are nursing homes that will do things like change someone's diaper just once or twice a day. They are understaffed or whatever. And so the person with a disability will be sitting for hours in their own pee, stool, and menstrual blood for HOURS.

If we as a society had an effective community supports system, of course we'd see a huge difference in the levels of individual care and hygiene (and states would save a BUNDLE of money). But we don't so, FRIDA fully supports groups like ADAPT that are fighting for community choice.

OK, fourthly, an issue that has been raised is that some women with disabilities who are able to wear pads are sometimes not trained on how to use them. What are people doing about this? There are also lots of women who are physically unable to change their own pads. Well, let's think about this. Just because you can't use pads or don't know how, does that mean you should just be allowed to sit in your menstrual blood and smell awful? Doesn't being unclean and unhygienic take away some of your personal dignity? Doesn't being unclean and unhygienic just shove you even further down the social ladder? Doesn't it give people further excuse to keep you away from "accepted" society? How many of us, walking in our communities, have given a wide berth to someone who is clearly unwashed? How many of us have seen others do that?

So the issue that the Pad Patrol is trying to address, in a grassroots way, is complicated and underground.

A few more details about how the Pad Patrol works: women know that there is a contact person from whom they can get pads, or can request pads for a family member. The pads have to be picked up from where we work as we do not have the resources to go out and drive pads to people. Women also learn about the pads through support groups.

FRIDA fully encourages efforts to address the pad issue in your communities. Get pads donated, find someone who is willing to be a contact person, and figure out a way to get stuff distributed. This is an effort that is about all of us and is done simply because we are trying to empower people to hopefully one day say, "Hey, it's complete bullshit that I have to beg for pads and today is the day I'm gonna report this and expose the problem." If anyone knows a woman who's willing to do that, do all you can to help her.

One final thought: when the system fails to support our having pads when we need them, and fails to empower us to use them, the system is taking away our right to manage our womanhood. The system does not see us as women. The system sees us as cash cows. Well, FRIDA does not MOO.

Disability Pride Parade Pics!

Check out http://www.uloba.no/templates/Page.aspx?id=5228 for a slideshow of Disability Pride Parade Pics by our friends from teh disability righst group ULOBA in Norway! You will see a few pics of FRIDA members marchin', and chantin', and having a lot of fun!

Hi all,
With his permission, I am forwording Stephen Drake's message (below) regarding the case of Ruben Navarro. The Cilla Sluga blog Steve recommends reading sheds a very different light on this story as compared to mainstream media reports and Steve does a nice job of summarizing the issues below.

In order to think about ways that FRIDA might respond to this case I’d like to know what others see as the feminist aspects involved. For example, and just to get started, is the effective breaking up of Rosa’s small family (just her and Ruben) after Rosa became disabled a feminist issue? Is the hospital’s treatment of Rosa Navarro (ignoring her) a feminist issue? Are there more feminist points in the case?

Nothing formal here, stream-of-consciousness thinking is fine. I’m just trying to flesh out what the uniquely feminist issues to this tragedy could be and I could use all of your thoughts on this.
Thanks in advance. Sharon

**********

Ruben Navarro, whose death was allegedly "hastened" by a
transplant physician in full view of other medical professionals,
is a disability story.

But you wouldn't know it from the press coverage.

That needs to change. Right now, the news is dominated by ethicists,
lawyers and medical advocates of all stripes, all of them coming to the front to talk about the concerns they have about how this incident will affect their respective interests.

For the fullest account of Navarro's life and death, I urge advocates and
activists to read the following blog entry by Cilla Sluga, an Illinois
disability advocate who is the mother of an adult with disabiblities and who has acquired disabilities herself as an adult:

http://mybignoise.blogspot.com/2007/08/diagnosis-murder.html

According to Cilla, whose research on the coverage and documentation
is comprehensive:

Ruben Navarro was placed in a nursing home due to his mother's
disabilities and lack of ability to find in-home support.

At the nursing home, Ruben Navarro developed bedsores due to neglect. He
also experienced harmful seizures due to staff neglect in giving him
appropriate anti-seizure medication.

The seizures are what landed him in the hospital where his health
declined. On life support, his mother was told there was a five-day limit for giving life-support.

As most reading this are aware, Ruben Navarro was given massive doses
of morphine and ativan by a transplant surgeon who wasn't supposed to
touch Navarro until he'd been declared dead. This occurred in full view of
numerous other medical professionals, none of whom have suffered legal or
professional penalties or sanctions.

In a state where assisted suicide is still a hot and popular topic, the
disability community cannot afford to be silent. This is about the lack of proper community support, abuse and neglect in institutions, the devaluing of our lives in medical settings, and the lack of accountability that exists for members of the medical profession.

As this case progresses, there will be numerous opportunities to speak out
about issues important to ADAPT, Not Dead Yet and others in the disability
community. Our voices are the best chance to affect the dialog about this
issue in a way that will prevent repeats.

Right now, the big concern in the public dialog appears to be that the
publicity surrounding this will negatively impact the rate of organ donation.

That's important, but so was the life of Ruben Navarro - and the lives of
others left similarly vulnerable.

Stephen Drake
Research Analyst
Not Dead Yet
7521 Madison St.
Forest Park, IL 60130
708-209-1500
http://www.notdeadyet.org

The disabililty community and the California assisted suicide bill (AB 374)

The role the disability community has played in defeating the assisted suicide bill recently in California is explored in this article in the Los Angeles Times. It comes via this post about the article by Penny Richards from Disability Studies at Temple University, which also provides links to biographies of Paul Longmore, Marilyn Golden of DREDF, Ann Guerra and Laura Remson Mitchell, who are against the bill, and Alan Toy and Lloyd Levine, who supported the bill.

The article presents the issues concerning assisted suicide fairly and clearly, and is written by LA Times staff writer James Ricci.

Here is a quote from the article by Paul Longmore (against the bill):

HMO's are denying access to healthcare and hastening people's deaths already ... Our concern is not just how this will affect us. Given the way the U.S. health care system is getting increasingly unjust and even savage, I don't think the system could be trusted to implement such a system equitably, or confine it to people who are immediately terminally ill.

And here is a quote by Alan Toy (for the bill):

If we're always acting out of the history of all the unjustices perpetrated against us, instead of the progress we've made, it reinforces societal notions that people with disabilities are victims ... I don't believe people will be looking for any tiny loopholes in the law so they can start exterminating us against our will. I don't know how they make the leap to thinking this is going to be the death of us."

She "wanted a life without autism" : Karen McCarron's confession can be used at her trial

The confession that Karen McCarron made to police and family members about allegedly killing her 3-year-old autistic daughter, Katie, on May 13 2006, will be admissable during her trial. In the videotaped confession, McCarron is alleged to have said that she was overwhelmed, that she "wanted a life without autism" and that she suffocated Katie with a plastic garbage bag.

Karen McCarron's attorney, Marc Wolfe, previously argued that McCarron's confession, which she made while she was on suicide watch after overdosing on Tylenol, should not be allowed, because of "her questionable emotional state." Prosecutors in the case counter that when she made the statement, she appeared "coherent and mentally stable." Marc Wolfe also argued that allowing the taped confession to be shown would be a violation of physician/patient privilege. Prosecutors argue, however, that this privilege "does not apply in homicide or child abuse cases."

Karen McCarron is charged with 2 counts of first-degree murder, two counts of obstructing justice, and one count of concealment of a homicidal death. She is free on a $1 million dollar bond, and is set to return court on September 7.

The full article is here.

Man regains speech, and in the words of his doctor, his personhood, after brain stimulation

A 38 year old man in a minimally conscious state, who has not spoken for six years as a result of a severe head injury, has regained the ability to speak, and, in the words of his doctor, his "personhood" and interests, after being treated with deep brain stimulation.

In his post about the New York Times article about this case, Steve Drake from Not Dead Yet describes it as a "mix of the disturbing and the hopeful." While on the one had, "it demonstrates that one technique tapped potential in one man with severe brain injury," on the other, Steve argues, the comment by Dr. Joseph Fins suggesting that the man had neither personhood nor interests before this intervention is an "unusually honest statement by a medical professional in regard to the way in which people with severe intellectual disabilities are viewed."

This is the comment by Dr. Fins, who is chief of medical ethics at Cornell and a coauthor of the study, that Steve is referring to:

"[the man] has regained his personhood, his personal agency ... the patient has amnesia and cannot fully represent his interests ... but now he's got interests to represent."

Certainly, as Steve Drake argues, Dr Finns comment can be understood as suggesting that prior to the intervention, the man did not have his personhood. In other words, Dr Finns comment that the man has regained his personhood and his agency after the intervention can be read as suggestsing that before the intervention, the man did not have it - that when the man became mute, unable to speak as the result of his accident, he lost his personhood along with his agency. After he began to speak again, after the intervention, he regained both his personhood and agency. This, of course, begs the question: if the man had his personhood prior to his accident, then where did it go after his accident and before the intervention that restored it?

Pushing the analysis a little further still, in Dr Fins comment, there is an implied link between personhood and verbal communication - prior to the intervention, when the man was minimally conscious and could not speak or move, he had neither personhood, nor agency. Now that he can speak and move, he has both. Morever, it is implied, personhood is something that a person can have one moment, and not the next. Prior to his accident, the man had personhood, after it, he didn't. He "regained" his personhood when he began to speak again.

It may, of course, not be the case that Dr Fin believes that the man had neither personhood, presence nor interests when he was unable to speak, prior to the intervention - this is but one way of reading his comment. But his comments nevertheless raise the important question of how people with severe brain injuries are viewed in the medical profession. Certainly, the case underscores that the notion of personhood is perspectival and changeable; Steve Drake clearly does not view speaking as an essential element of personhood. To the contrary, this understanding of personhood and its implications for understandings of people with severe intellectual disabilities disturbs him. Dr Fins comment reminds us that the notion that personhood entails the ability to speak is also linked to a masculinist understanding of the person as rational, autonomous, independent and disembodied, notions of the person that feminists have demonstrated have been used throughout history to devalue women and people with disabilities.

Here's the story and here's an excerpt:

The man described in the Nature study speaks in a breathy but audible voice, said Dr. Joseph Giacino, a co-lead author. He does not initiate conversations but can reply to others, typically with one to three words, said Giacino, of the JFK Johnson Rehabilitation Institute in Edison, N.J.
Several weeks ago he recited the first half of the Pledge of Allegiance without assistance, Giacino said.

The man also recovered some movement. He can demonstrate motions such as brushing his teeth, said study lead author Dr. Nicholas Schiff of Weill Cornell Medical College in New York. He can't actually carry out that task because the tendons in his arms contracted after years of immobility.

Advance Youth Leadership Power (AYLP) Presents:
Midsummer Fundraiser

When: Friday, August 3rd, 5 to 8 pm

Where: Access Living, 115 W. Chicago Avenue
(accessible spot!)

What: PARTY!!! We will serve food, have games, offer the first-ever AYLP Idol contest (Yes! For real! Bring your talents!), do a Prank Raffle, and lots of other fun stuff! Bring party music CDs.

Cost: $10 if you can pay it, or whatever you can pay.

We will provide personal assistants. Please let us know if you have other accommodation needs.
Please RSVP if you plan to come! Contact Jose Ocampo at (708) 656-3826 or Veronica Martinez at vmars_86@yahoo.com.

What is AYLP? AYLP is a group of young adults with disabilities ages 18 to 30 who advocate in Chicago on issues impacting youth with disabilities such as education and paratransit. Last year, we fought to win back $14 million in funding for special education in the Chicago Public Schools. Your support will empower us to keep kicking butt!

Posted on behalf of FRIDA member, Ana Mercado.