Sunday, February 20, 2005
[From Fredric Schroeder, who served as Commissioner of the Rehabilitation Services Administration under President Clinton:]
Policy Notes by Fredric K. Schroeder, Ph.D.
Friday, February 18, 2005
Volume II, No. 4
Re: Joanne Wilson's Resignation
Issue: On Tuesday, February 8, 2005, RSA Commissioner, Joanne Wilson announced her resignation. What prompted her resignation and what does it mean for the future of the
public rehabilitation program?
Response: While her resignation does not officially take effect until the end of the month, today is Joanne Wilson's last day in the office. During her tenure as Commissioner of the Rehabilitation Services Administration (RSA), Dr. Wilson has shown herself to be an effective advocate for
the public rehabilitation program and the people it serves. She brought to the position vision and leadership, qualities far too often absent in Washington. She believes that the strength of the vocational rehabilitation (VR) program lies in its ability to change lives, one at a time. She knows this intellectually and personally. As a blind person herself, she faced the fears and insecurities common to people growing up with disabilities. She knows what it is to live in a world that, however well intended, assumes you can do very little; she knows what it is to have a
family that wants to protect you believing you cannot protect yourself; she knows what it is to face discrimination; and she knows what it is to have your confidence eroded, taking what society believes about blindness and learning to believe it yourself....
So why did she resign? On Monday, February 7, 2005, the Department of Education unveiled its plan to close the RSA regional offices. The same day, the Administration announced its intent to seek super waiver authority to allow the block granting of a number of employment related programs, including VR. The next day, Dr. Wilson resigned.
It is my view that she believed these plans, if implemented, would mean the end of comprehensive employment services for people with disabilities throughout the nation and, as a person of conscience, would not--could not--be a part of any plan that would harm people with disabilities.
The above is an exerpt from a Justice For All mailing. To view the whole article go to the Justice For All archives.
Friday, February 18, 2005
Read on by clicking John Hockenberry
Spread the news. Our Request for Distribution
Thursday, February 17, 2005
Listen to National Public Radio – Morning Edition tomorrow
Monday, February 14, 2005
We must not forget that within the last fifty years many disabled were not viewed as humans and were treated as property.
"People with Disabilities Used in U.S. Medical Research"
[The following story gets off to a slow start, but
discusses how thousands of institutionalized persons with
disabilities were subject to medical experimental research.]
A Dark Chapter In Medical History
Feb. 9, 2005
Karen Alves was just 10 when she lost her baby brother,
Mark Dal Molin, in 1961.
As the oldest of four, she says her fondest childhood
memories are of doting on her little brother. "One of the
things we looked forward to, when we came home from school,
was to play with Mark," she says.
But life would be a struggle for the Dal Molins because
Mark was born with cerebral palsy, a condition that
cripples the body, but not necessarily the mind.
"In the '50s, cerebral palsied children were considered to
be developmentally disabled, mentally retarded," says Alves
to correspondent Vicki Mabrey.
"I never believed he was mentally retarded. When you looked
into his eyes, he communicated through his eyes. ... He'd
laugh and giggle and kick, and just screech when he saw
But by 3, Mark could neither walk nor talk, which meant his
mother, Rosemarie, had to care for him.
"We know he recognized everybody," says Rosemarie. "He
would laugh or he would cry if he was unhappy."
The children's father, Bill Dal Molin, felt that Rosemarie
was neglecting their three daughters, because of Mark. "His
mother was very, very much attentive to him, and the girls,
I felt, were like troops to her," says Bill. "She was very
hard on them, the girls."
Doctors advised the Dal Molins to commit their son, so Bill
told Rosemarie they had to send Mark to an institution. It
was November 1958.
"I just remember one day coming home from school and the
house was very quiet," says Karen, who never got to say
goodbye to her brother. "I don't remember much after that.
It profoundly affected me."
Rosemarie had committed 3-year-old Mark to Sonoma State
Hospital, the largest institution for children in
California. At the time, the hospital housed 3,500 children
with diverse needs, from babies born with minor defects,
like a cleft palate or a club foot, to children with
epilepsy and Down syndrome.
While the severely disabled languished in overcrowded
rooms, the able-bodied were put to work in the
institutions dairies and orchards.
Rosemarie did something more that other parents who had
committed their children to Sonoma State did not; she
visited her son every Wednesday.
"It was just a small thing that I can still do is to go see
him," says Rosemarie. "Because most of these children, they
never see parents again."
But those visits came to an abrupt end on Memorial Day,
1961, when Mark was 6.
"I picked up the phone and I heard a voice say, 'Is Mrs.
Dal Molin in?' and I just knew," says Karen. "They didnt
even say where they were calling from. But I just, this
dread came into my heart, and I got my mom and I left. I
ran. I hid. Nobody told me. I knew he was dead."
>From that day on, Karen and her sisters, Chris and Gail,
say they never spoke Mark's name again. They buried their
grief, grew up and had families of their own. But after 40
years, they still struggle with the decision to
institutionalize their brother.
"It pretty much blew the family apart," says Gail. "I
believe that Dad did what he felt was best for the family.
In my heart, I know that is true. But the impact of it on
each one of us and the family was devastating."
In 1994, haunted by thoughts of her baby brother, Karen
decided to devote all her spare time to answering the
question that had burdened her for decades: how exactly did
"I just needed to know and, no matter what it was, I needed
to know. So I went to the recorders office," says Karen.
"There was no death certificate. One of the clerks came
over to the front desk, leaned over and said 'When did he
die?' And I said, '1961.' 'Well, when did he go into Sonoma
State?' And I said, '1958,' and she said, 'You better look
into it, because strange things happened there.'"
Things got stranger still when Karen noticed an article in
the local paper saying 16,000 people, including children,
had been used in radiation experiments. "Out of curiosity,
I started to read it, and they mentioned patients that were
in state-run hospitals being used," says Karen. "And I just
go, 'Oh my God.' This could be it."
Then, President Clinton had just ordered thousands of
secret documents on government-sponsored human radiation
experiments declassified and made available on the
Karen found a study funded by the federal government
involving 1,100 Sonoma State cerebral palsy patients from
1955-1960. One document she also found showed that her
brother had been part of the study, assigned Specimen
Karen wasn't able to find out what tests, if any, Mark was
subjected to. But some of the patients in the Sonoma State
study were put through painful procedures like the
pneumoencelphalogram, in which air is injected into the
brain before a series of X-rays.
"Imagine puncturing someones spinal cord, drawing fluid
out and putting a foreign substance in there. Gas," says
Karen. "When they trap air in your body, youre in pain,
excruciating pain, for days."
"They were the raw material of medical research," says
Susan Lederer, who teaches medical history at Yale
University. She was a member of the presidential committee
that investigated the radiation experiments, and she says
she wasnt shocked by the findings because researchers have
been using disabled children in experiments for over a
"Children in orphanages, children in homes of the mentally
retarded, these are all good populations from the sense of
medical research, because you have an easily accessible
group of people living in controlled circumstances, and you
can monitor them," says Lederer.
Lederer read the study that was conducted at Sonoma State
Hospital, and says the children underwent painful
experimentation "for which they received no direct
"It seems clear that these were intended to enlarge
knowledge about cerebral palsy," adds Lederer.
It did not produce a breakthrough, although Lederer says
studies using mentally retarded children were critical in
creating vaccines for polio and hepatitis.
Lederer says using captive populations meant big money for
medical researchers: "It would even be an advantage in
applying for grant money, because you dont have to go to
the problem of recruiting subjects."
In the case of Sonoma State, records show that when the
study began, cerebral palsy admissions there jumped by 300
"One of the ways that medical directors of such
institutions sort of connected themselves to the world of
medical research was simply to provide their patients as
commodities," says Lederer. "I mean, we can provide this
many guinea pigs for you."
Sonoma State is now known as Sonoma Developmental Center.
During her 12-year search, Karen repeatedly wrote to the
current administrator, looking for information about Mark.
She was told that there were "no records on radiation
studies at Sonoma," and that there was "no record that your
brother was involved in radiation research."
"And I'd say, 'Just go to the human radiation Web site and
put in Sonoma State Hospital in your search and documents
come up," says Karen. "Youve gotta have something there.
No. They deny it. Deny it. If I called her right now, shed
Administrator Theresa Murphy has worked at Sonoma State for
30 years. She said she didn't have any information about
the medical experimentation that was taking place at the
When asked if patients at state hospitals were used in
medical research, Murphy says, "I've read that there has
been things like using rattlesnake venom of epilepsy. But
you know, there's just nothing in our archives about the
research you are talking about."
"If these studies were being done, if there are patients
from here being sent for radiation studies, is that a stain
on the hospital record," asks Mabrey.
"I think in the history of people with developmental
disabilities, and there have been some dark times. I truly
believe that," says Murphy. "And it wouldn't surprise me
that there were things we would find -- consider
It took two years and a court order for Karen to get Sonoma
State to turn over Marks medical records. Though not
complete, records did show that Mark Dal Molin suffered
unusually high fevers the last six months of his life
before dying of a seizure.
"He ran extremely high fevers that none of us here right
now would live through," says Karen. "Swollen eyes,
seizures, those things can fit in with radiation
Mark's records contained another shock. Karen found not
one, but two autopsy reports, one for his body and another
for his brain. Karen says that Mark's brain was removed
after he died.
"They took my brothers brain without consent, and the
doctor, in his obituary it said that he had one of the
largest brain collections," says Karen. "And if theres any
way for me to find that, I would like to put him back
60 Minutes Wednesday learned that between 1955 and 1960,
the brain of every cerebral palsy child who died at Sonoma
State was removed and studied.
Rosemarie says she never gave them permission to take
Mark's brain for research purposes. "I came from Europe
after the war, where all these horrendous things happened,"
says Rosemarie. "I never dreamed that in this country, they
would do experimenting children. Handicapped children."
Unless their families claimed them, the children ended up
in a community grave with the ashes of 500 other people, or
buried in a empty field without a headstone to mark their
Theresa Murphy showed 60 Minutes Wednesday the final
resting place of 1,400 Sonoma State patients. "The folks
that remain here are undisturbed and available for family
visitation," says Murphy.
But Mark Dal Molin's family was able, at least, to spare
him that fate. They had him cremated and placed his ashes
in a private mausoleum.
(c) MMV, CBS Worldwide Inc. All Rights Reserved.
It dawned on me over the weekend that with the commercialization of Valentine's Day in all forms of media promotion I saw not one image of a person, not only having a disability, but a person man or woman with any type of difference in appearance. So just this example of this one holiday if taking to its logical conclusion means that we are all only deserving of trinkets, bobbles, and words of true love if we fit the Hallmark or other commercial marketing images. Maybe my petticoat of cynicism towards Valentine's Day is showing and many people might just shrug it off as sour grapes, and maybe quite frankly there is some of that, but I sincerely believe that there is also a more insidious issue at hand. The marketing strategy reflects public sentiment as well as influences public sentiment. So if we never see people on greeting cards or on commercials that intimate that a person is only deserving of the recognition, care, and love that a holiday like Valentine's Day communicates, then we will always remain, shall I say, naive in "matters of the heart."
I spent this weekend perusing the different companies that carry e-cards, not one had a gorgeous overweight woman or man, or even an average looking overweight person; and as for a person with disabilities well that would be completely off the commercial radar screen as far as greeting cards. So my question is if my significant other were to buy me a valentine would he have to compromise and buy one that reflected the ablest fantasy, or would he have to select one with a generic picture of a box of chocolate candy ( I don't really like candy), or a bouquet of roses ( I am allergic to flowers), so what is the poor guy to do? Well worry not all my supporters who read this post. He doesn't believe in Valentine's Day because of the capitalistic propaganda that it infiltrates into everyone's fragile psyche...at least that's what he tells me.
All kidding aside, yes it is important and even imperative to fight for transportation, decent housing, equal job opportunities, personal assistance, etc. But let us advocates and activists take a moment here or there to fight for the little ordinary pleasures of life, why? Well to begin with, so someday women and men with disabilities or other human differences could have their images accurately and attractively displayed in a card section of your local drugstore. Hope that happens before I'm too old to repay the giver with a passionate kiss!
Saturday, February 12, 2005
I have written to you before about my activities as a person with multiple disabilities, a published poet, and a "PA Partners in the Arts Project Stream Grantee" (a division of the "PA Council on the
It previously was my hope that there might be some interest generated in what I write, and under the circumstances that I do it, by Disability Studies Program. Anyway, I wanted to send you the Internet flyer that I am using to promote a multimedia CD (titled: "Poetic Visions & Animated Dreams") that is being done on my poetry/life.
I have always hoped that my poetry would lead to a better life for me, and I still firmly hold on to that dream.
My very best wishes to you.
25 Nottingham Road
Bloomsburg, PA 17815
James Magill's Home Page: http://hometown.aol.com/jwm2125
Wednesday, February 09, 2005
Tuesday, February 08, 2005
Monday, February 07, 2005
The primary goals of the site are to; 1) consolidate relevant international, regional and foreign legal sources and documents from credible web resources; 2) provide access to primary
source material according to issuing body; 3) reflect the historical development of instruments that have undergone revisions; 4) provide access to relevant foreign legislation and constitutional provisions by country, and; 5) enhance the researcher's understanding of the topic and its sources through annotations and explanatory text.
The site is currently organized under three broad divisions; international, regional and foreign disability law. The main topics are subdivided into smaller categories, under which annotations and links to individual documents may be found. The contents may be browsed or searched using keywords. The next phase in the site's development will be full-text access to primary and secondary source material not available on the Internet. (http://www.law.syr.edu/lawlibrary/electronic/humanrights.asp)
Thursday, February 03, 2005
I haven’t seen the film yet, but Lennard Davis has and wants the readers of the Chicago Tribune to know “Why
Wednesday, February 02, 2005
Talk of the Nation, February 2, 2005 · A world of silence. That's often how those of us who can hear imagine deafness. But that silence contains a multitude of voices, with a shared history and language and a controversial future.
NPR's Neal Conan and guests discuss the history of the deaf community and the complex issues it currently faces. Guests: Carol Padden and Tom Humphries, coauthors, Inside Deaf Culture. Padden and Humphries are professors of communication at the University of California, San Diego; I. King Jordan, President, Gallaudet University
From Steve Eidelman, Executive Director of The Arc of the United States
PBS Documentary Countdown! Six weeks
Debuts Tuesday, Feb. 15 nationwide
Welcome to 2005. It's going to be a breakout year! Mark Sunday, Feb. 20 at 11pm on your calendar for the PBS nationwide broadcast debut of "ON A ROLL: Family,Disability and The American Dream." Five years in the making, this award-winning documentary is an honest, insightful and sometimes brutal portrait of radio talk show host, Greg Smith, a man who refuses to allow his severe disability to keep him from living the American Dream. Greg is very excited about the film and what it can do to help people with disabilities get a bigger slice of the media pie. Read his recent article "Disability Culture: Ready for Prime Time?" Then, call your local PBS station and demand "On A Roll!"
Tuesday, February 01, 2005
The Body in the Library,
a lecture by critic & art historian
and reception with artist David Bunn
Monday, February 7, 2005 at 7 p.m.
at the Arden Theater
40 N. 2nd Street, Old City
The focus of the lecture will be artist David Bunn's Double Monster project, completed while in residence at the Mutter Museum, College of Physicians, Philadelphia, and dedicated to the memory of Gretchen Worden.
Howard Singerman has been a crucial voice in the field of contemporary art history and criticism, and in examinations of the professional education of contemporary artists. Singerman is a regular contributor to Artforum, and author of the influential Art Subjects: Making Artists in the American University (University of California Press, 1999). Singerman has also contributed essays to October, Parkett, Emergences, Art in America, La Part de L'Oeil and numerous publications including ! Mike Kelley: Catholic Tastes; Chris Burden: A Twenty-Year Survey; and A Forest of Signs: Art in the Crisis of Representation. Currently Associate Professor of Art History at the University of Virginia, he has also taught in the art history department at Barnard College and in a number of studio art departments and art schools, including UCLA, the California Institute of the Arts, and the Art Center College of Design.
For more information call 215.782.2776
Tyler School of Art
7725 Penrose Avenue
Elkins Park, PA 19027