STOP MEDICAL BIGOTRIES & DISCRIMINATIONS! Please take a moment to email protest to Hospice of CNY (e-mail: info@hospicecny.org):

Tonight, Sept. 19, Hospice of Central New York bosses are holding their 25th-anniversary annual fund-raising bash, described as “an evening of music, dinner, dancing, cocktails and FUN!” Tickets are $125 each; tables reportedly $1,000; and corporations and banks sponsor this event.

By making my experience as a patient, and my life partner/spouse’s experience public, we have learned—to our horror, but not our surprise—that we are not the only ones to have suffered while in the “care” of Hospice of CNY. (see below)

I’m not just fighting for my own life—or for longevity at the expense of principle.

I know that bigotries and discriminations in health care—undocumented migrant workers and their families, oppressed nationalities, religions, sexes, self/gender expressions, sexualities; children, youth, elders, and dis/ablities—systematically deny care to those who are fighting for their lives.

Please take a moment to e-mail your demands to end medical bigotries and discriminations: (info@hospicecny.org)
If you feel this is important action for your friends, please repost.


Structural changes are required:
    —Medical Director Dr. Setla and Dr. Horst, who demonstrated
bigoted behaviors, must be fired
—new CNY Hospice management needs to
 publicly apologize to the LGBT and other oppressed communities
    —new CNY Hospice management must announce and make
structural remedies to explain how and why no consumers
will ever face these discriminations and bigotries again

***

Memo of Protest from Leslie Feinberg
& Minnie Bruce Pratt to Hospice of CNY
September 19, 2014

Suffering a sudden, rapid and steep health decline in late Spring 2013, I consulted with Dr. Joel Potash, Founding Director of Hospice of Central New York.

Dr. Potash recommended admission to home hospice in June 2013. I also underwent an official hours-long interview and examination by Dr. Judith Setla, current Director.

In the opening interview with Dr. Setla, the doctor told me she would “fire” me if I improved; I replied that she wouldn’t have to, I would quit and celebrate. When asked by the doctor if I were suicidal, I replied that I am incapable of hurting myself, and pointed out that I had asked to continue taking medications for infectious diseases during hospice, because my quality of life had improved with these treatments and it would feel like hurting myself to stop.

I stated emphatically during both interviews that my goal was to survive hospice, though I was gravely ill. I entered Hospice of CNY, expecting the care promised in Hospice’s own official guidelines and advertising: “Hospice Treat People 3 Ways: Comfort, Love, Respect” http://www.hospicecny.org/hospice-treats-people-3-ways

Our experience with Hospice of CNY was the opposite of “comfort, love and respect”—instead we experienced unnecessary physical agony, prejudice, and disrespect. In addition, Hospice failed to live up to its own standards of care in relation to management of pain, as listed in “Patient Information on Pain and Pain Relief.”

Here are some (though not all) of the details of the failures of Hospice of CNY:

1) Anti-LGBT+ Bigotries

Dr. Potash told Dr. Setla on the phone in our hearing that we were very concerned about LGBT discrimination, and Dr. Setla told him her agency was “the best” on this, in the initial interview Dr. Setla told me she didn’t understand “what” I am. When I said she could tell her staff that I was a butch lesbian and that we were a same-sex couple, the doctor said they were more used to “the other kind.”

During both interviews (and in a later interview with Dr. Horst), Minnie Bruce and I repeatedly emphasized that I as an individually, and we as a couple, had suffered extreme anti-lesbian and anti-trans* prejudice in my attempts to obtain health care during our more than 21 years together. For instance, Minnie Bruce recounted how in 1995, we were turned away by an emergency room doctor who stated that I had a fever of 105 degrees because I was a “troubled person.”

Though Minnie Bruce and I provided many educationals, neither Dr. Setla nor Dr. Horst seemed to have any grasp or any real understanding of the realities, difficulties, dangers, and complexities of LGBT+ lives in relation to health care.

For example, after six weeks in hospice and after hours of education from my spouse about our lesbian lives, Dr. Horst “changed my sex,” in my Hospice CNY records. Horst reveals her own prejudices and unprofessional conduct when she described me and my body in writing, using a declination of the old bigoted “he/she” epithet—a slur both anti-LGBT and anti-intersexual—to describe me, my body and my life.

I was also told that a home aide would be available who would be good for us since this particular aide had “seen everything—there’s nothing she hasn’t seen” during her many years of service. Yet the Hospice apparently never informed the aide that I am female, and that Minnie Bruce and I are a same-sex couple.

As a result, my spouse had to do all the care of my body for six weeks.

These various phrases were uttered with seemingly no understanding of how completely they dehumanized trans* lives in general, and mine in particular.

Our relationship as a lesbian couple was also accorded no serious respect or care. For instance, when we talked at various times in the intake interview of our grief, love and commitment during this difficult stage of our life together, and when I spoke of how beautiful it was to be loved by a partner who would go through hospice with me, Dr. Setla laughed inappropriately.

In the intake interview, during a discussion of late-stage hospice difficulties, Dr. Setla emphasized quite dramatically and at length the possibility of having to separate me from Minnie Bruce by sending me to hospital or to Francis House residential care run by nuns, and described quite graphically how I would be forcibly restrained. I said if I were taken from our home, then Minnie Bruce or a friend would be with me 24 hours a day if I were in an institution.

Dr. Setla expressed great surprise and skepticism at this necessity—another example of the denial of bigotries by this Hospice director.

I pointed to my own experiences of threats of rape and physical/sexual abuse.  

In later conversations with acquaintances who also had experience with Hospice of CNY, these acquaintances exclaimed in surprise at the doctor’s emphasis on how we might “have” to be separated, saying their experience with Hospice was just the opposite—that Hospice often went to extreme lengths to “keep together” members of heterosexual families that were extremely troubled and not necessarily loving.

2) Anti-Semitism

I am a secular Jew, seeking secular care, and I made clear during the initial intake interview. During the conversation above, about my potential forced removal of from the home to restraints and a hospital bed, Dr. Setla emphasized that an alternative was to send me to Francis House, a Catholic institution.

I was clear that I had specific legal instructions to my Powers of Attorney that I seek secular care and described some of the mis-treatment I have experienced over the years in religious health institutions.

Dr. Setla persisted in demanding that I consider Francis House as something I might “have” to do. I restated my own determination to stay out of institutional care, and stated that my health proxies and the people holding my powers of attorney (including Minnie Bruce) were well aware of my wishes and concurred with those wishes.

Dr. Setla grew more insistently adamant, saying, “If you truly were a scientific woman, you have to at least meet with the nuns.” I continued to politely, but equally adamantly, decline this as an option.

3) Failure to Provide Comfort and Pain Relief

The “Patient Information on Pain and Pain Relief” sheet included in the introductory packet to Hospice of CNY has statements such as
“1. You deserve to have your pain believed….” and
“2. Pain management should be a priority….” and
“3. You deserve to be treated with respect….” and
“6. You deserve to have your pain medication explained to you…” and
“7. If you have serve pain, you deserve prompt and immediate attention…”

None of these promises were fulfilled during the 6+ weeks I was in Hospice.

I had told Dr. Potash and Dr. Setla in the initial interview of my non-response to morphine-based drugs, as all my doctors and dentists are aware. I was told this would not be a problem. I was told that appropriate response would be made when I needed pain relief.

But the first time my spouse called to report an unbearable increase in my pain, the nurse handed me a cell phone. It was Dr. Setla who stated: “I’ll never give you my medicines!” She added with seeming mockery, “Why are you so afraid to get better, Leslie?”

Dr. Setla also announced—a week after admission into hospice—that she wanted to draw my blood in order to do unspecified “diagnostic work.”

I told Dr. Setla that such work should have been proposed before hospice admission. If I were going back to diagnostic work, it wouldn’t be with a doctor who demonstrated a shocking lack of knowledge of infectious diseases.

I made the decision not to ask for any more pain relief in an attempt to protect my credibility and my integrity as someone suffering from late-stage tick-borne diseases.

But that is no justification for failure to provide pain relief. I never refused help with pain. I refused to ask again.

I continued to report my pain, my spouse was interviewed for hours each week about my pain. Our neighbors and building management were all alarmed by the weeks of roaring pain from our apartment.

My spouse was told that they would give me pain medication after I was unconscious so that my spouse “wouldn’t suffer.” Why would I need pain relief then? My spouse was already suffering and was traumatized from hearing her loved one screaming in pain.

Since I had been admitted to hospice, I could not turn to any other doctors outside of hospice, no matter how the medical horrors mounted for me and for Minnie Bruce.

I was the one who ordered hospice out of our home and our lives, after more than six weeks of pain, suffering and discriminations.

I packed up all their drugs, including the emergency “Comfort Care” box from the refrigerator.

Dr. Horst told me I could keep the drugs. I told them I didn’t want their drugs.


Hospice of CNY management is caught in a contradiction of their own creation: If they thought I was not dying, they were bound by law to release me immediately. But once admitted, they are bound by their own hospice guidelines and laws.

I had been admitted on June 13, 2013. I was the one who fired hospice, on July 29, 2013.

I am not merely reporting that Hospice of CNY did not meet our needs. I am protesting the fact that Drs. Setla and Horst made our lives much, much worse—they did, and only did, great and irreparable harm.

Help deliver message to Hospice of Central New York bosses: LGBQT+ lives—all oppressed lives—matter!

{mic check, please!}
BIGOTRIES ARE BARRIERS TO HEALTH CARE!

The costs of health insurance—doctors, medicines, tests, care—are just one major barrier to health care under capitalism.

And so are white supremacy, the demand for identification papers, woman hating—particularly transmisogyny—lack of medical care for those in racist mass incarceration, lack of accessibilities, denial of care to oppressed sexualities and self/gender expressions, and other forms of institutionalized oppressions.

I would not argue that those who work in health care are more prejudiced than other workers who have been indoctrinated in this racist, sexist, anti-trans*, anti-LGBQ+ system.

But denial of health care based on prejudices can and does kill, directly and swiftly.

I am attaching my narrative about our experiences with Hospice of CNY. {see below} It was management that was cruel—not the staff.

I ask you to read it and to send an e-mail protest as well.
I ask that you post and re-post between now
and Trans* Remembrance Day,

If you had a loved one who had a good experience with Hospice of CNY management, I ask you to please add your demand to end discriminations.

I will not disrupt the vital telephone to Hospice of CNY. Instead, I will send this protest email to Hospice of CNY via the cyber address that its management uses for fundraising events: info@hospicecny.org

For example, Hospice of CNY plans to raise $100,000 at its 25th gala dinner on September 19, titled “September Song,” at Traditions at the Links at Erie Village. Tickets are $125 per person, or $1,000 for a table of ten.

Anti-oppressions activists have my permission to reproduce my narrative and distribute it to those attending the gala event.

I have notified Hospice of CNY management in writing to demand:
—that this attached narrative be appended to my records
—that I receive a full copy of my records, including intake admission evaluation
—that doctors who demonstrate bigoted behaviors,
 and refuse to relieve pain, must be fired
—that new Hospice of CNY management needs to publicly apologize
to the LGBT+ and other oppressed communities
and announce structural remedies

*****

Memo of Protest from Leslie Feinberg
& Minnie Bruce Pratt to Hospice of CNY
August 31, 2014

Suffering a sudden and catastrophic health decline, I consulted with Dr. Joel Potash, a former Director of Hospice of Central New York, who recommended admission to home hospice in June 2013. I also underwent an official hours-long interview and examination by Dr. Judith Setla, current Director. Both doctors concurred I was eligible for Hospice.

Dr. Potash was clear that he did not see me as suffering from depression in any way. In the opening interview with Dr. Setla, the doctor told me she would “fire” me if I improved; I replied that she wouldn’t have to, I would quit and celebrate. When asked by the doctor if I were suicidal, I replied that I am incapable of hurting myself, and pointed out that I had asked to continue taking medications for infectious diseases during hospice, because my quality of life had improved with these treatments and it would feel like hurting myself to stop.

I stated emphatically during both interviews that my goal was to survive hospice, though I was gravely ill. I entered Hospice of CNY, expecting the care promised in Hospice’s own official guidelines and advertising: “Hospice Treat People 3 Ways: Comfort, Love, Respect” http://www.hospicecny.org/hospice-treats-people-3-ways.

Our experience with Hospice of CNY was the opposite of “comfort, love and respect”—instead we experienced unnecessary physical agony, prejudice, and disrespect. In addition, Hospice failed to live up to its own standards of care in relation to management of pain, as listed in “Patient Information on Pain and Pain Relief.”

Here are some (though not all) of the details of the failures of Hospice of CNY:

1) Anti-LGBT+ Bigotries

Dr. Potash told Dr. Setla on the phone in our hearing that we were very concerned about LGBT discrimination, and Dr. Setla told him her agency was “the best” on this, in the initial interview Dr. Setla told me she didn’t understand “what” I am. When I said she could tell her staff that I was a butch lesbian and that we were a same-sex couple, the doctor said they were more used to “the other kind.”

During both interviews (and in a later interview with Dr. Horst), Minnie Bruce and I repeatedly emphasized that I as an individually, and we as a couple, had suffered extreme anti-lesbian and anti-trans* prejudice in my attempts to obtain health care during our more than 21 years together. For instance, Minnie Bruce recounted how in 1995, we were turned away by an emergency room doctor who stated that I had a fever of 105 degrees because I was a “troubled person.”

Though Minnie Bruce and I provided many educationals, neither Dr. Setla nor Dr. Horst seemed to have any grasp or any real understanding of the realities, difficulties, dangers, and complexities of LGBT+ lives in relation to health care.

I was also told that a home aide would be available who would be good for us since this particular aide had “seen everything—there’s nothing she hasn’t seen” during her many years of service. Yet the Hospice apparently never informed the aide that I am female, and that Minnie Bruce and I are a same-sex couple.

These various phrases were uttered with seemingly no understanding of how completely they dehumanized trans* lives in general, and mine in particular.

Our relationship as a lesbian couple was also accorded no serious respect or care. For instance, when we talked at various times in the intake interview of our grief, love and commitment during this difficult stage of our life together, and when I spoke of how beautiful it was to be loved by a partner who would go through hospice with me, Dr. Setla laughed inappropriately.

In the intake interview, during a discussion of late-stage hospice difficulties, Dr. Setla emphasized quite dramatically and at length the possibility of having to separate me from Minnie Bruce by sending me to hospital or to Francis House residential care run by nuns, and described quite graphically how I would be forcibly restrained. I said if I were taken from our home, then Minnie Bruce or a friend would be with me 24 hours a day if I were in an institution.

Dr. Setla expressed great surprise and skepticism at this necessity—another example of the denial of bigotries by this Hospice director.

I pointed to my own experiences of threats of rape and physical/sexual abuse.  

In later conversations with acquaintances who also had experience with Hospice of CNY, these acquaintances exclaimed in surprise at the doctor’s emphasis on how we might “have” to be separated, saying their experience with Hospice was just the opposite—that Hospice often went to extreme lengths to “keep together” members of heterosexual families that were extremely troubled and not necessarily loving.

2) Anti-Semitism

I am a secular Jew, seeking secular care, and I made clear during the initial intake interview. During the conversation above, about my potential forced removal of from the home to restraints and a hospital bed, Dr. Setla emphasized that an alternative was to send me to Francis House, a Catholic institution.

I was clear that I had specific legal instructions to my Powers of Attorney that I seek secular care and described some of the mis-treatment I have experienced over the years in religious health institutions.

Dr. Setla persisted in demanding that I consider Francis House as something I might “have” to do. I restated my own determination to stay out of institutional care, and stated that my health proxies and the people holding my powers of attorney (including Minnie Bruce) were well aware of my wishes and concurred with those wishes.

Dr. Setla grew more insistently adamant, saying, “If you truly were a scientific woman, you have to at least meet with the nuns.” I continued to politely, but equally adamantly, decline this as an option.

3) Failure to Provide Comfort and Pain Relief

The “Patient Information on Pain and Pain Relief” sheet included in the introductory packet to Hospice of CNY has statements such as
“1. You deserve to have your pain believed….” and
“2. Pain management should be a priority….” and
“3. You deserve to be treated with respect….” and
“6. You deserve to have your pain medication explained to you…” and
“7. If you have serve pain, you deserve prompt and immediate attention…”

None of these promises were fulfilled during the 6+ weeks I was in Hospice.

I had told Dr. Potash and Dr. Setla in the initial interview of my non-response to morphine-based drugs, as all my doctors and dentists are aware. I was told this would not be a problem. I was told that appropriate response would be made whenever I needed pain relief.

But the first time my spouse called to report an unbearable increase in my pain, the nurse handed me a cell phone. It was Dr. Setla who stated: “I’ll never give you my medicines!” She added with seeming mockery, saying, “Why are you so afraid to get better, Leslie?”

Dr. Setla also announced—a week after admission into hospice—that she wanted to draw my blood in order to do unspecified “diagnostic work.”

I told Dr. Setla that such work should have been proposed before hospice admission. If I were going back to diagnostic work, it wouldn’t be with a doctor who demonstrated a shocking lack of knowledge of infectious diseases.

I made the decision not to ask for any more pain relief in an attempt to protect my credibility and my integrity as someone suffering from late-stage tick-borne diseases.

But that is no justification for failure to provide pain relief.

I continued to report my pain, my spouse was interviewed for hours each week about my pain. Our neighbors and building management were all alarmed by the weeks of roaring pain from our apartment.

Since I had been admitted to hospice, I could not turn to any other doctors outside of hospice, no matter how the medical horrors mounted for me and for Minnie Bruce. I was the one who ordered hospice out of our home and our lives, after more than six weeks of pain, suffering and discriminations.

While I continued to suffer increasingly extreme pain, a prescription was mailed to our home for DEPRESSION. We knew, of course, that some medications used for treating depression are used “off-label” for other treatments; but in the past our medical team had always explained that to us.

We demanded and got a new doctor, Dr. Horst, but nothing changed in terms of the treatment of my pain, despite a recommendation from the nurse that gave us some hope for a break in the pain, but which the doctor overrode.

I endured the entire hospice stay in extreme pain, with no relief at all.

Hospice of CNY management is caught in a contradiction of their own creation: If they thought I was not dying, they were bound by law to release me immediately. But once admitted, they are bound by their own hospice guidelines and laws.



COMING VERY SOON!AUTHOR EDITION ofSTONE BUTCH BLUES
on lesliefeinberg.net:           FREE-READ/DOWNLOAD           AT-COST 12 point print edition
The novel should be available in print within weeks—we’re trying for my 65th birthday on Sept. 1, or as soon after as humanly possible.
I am so ill that gossip can travel around the world, while I can’t answer without health setbacks. Witness an immediate example: There’s an attempt using social media to try to crowd-source an attack on my author rights to my own novel, Stone Butch Blues.
Talk of a “casting call” for a movie of Stone Butch Blues is meant to bury the fact that I own all rights to my own novel. 
I have not and will not assign any rights to any adaptations or any movie.
The author edition of SBBs will explain why in more detail in the back matter.
I will post here when the novel is up on lesliefeinberg.net and available in print. 

COMING VERY SOON!
AUTHOR EDITION of
STONE BUTCH BLUES

on lesliefeinberg.net:
           FREE-READ/DOWNLOAD
          
AT-COST 12 point print edition

The novel should be available in print within weeks—we’re trying for my 65th birthday on Sept. 1, or as soon after as humanly possible.

I am so ill that gossip can travel around the world, while I can’t answer without health setbacks. Witness an immediate example: There’s an attempt using social media to try to crowd-source an attack on my author rights to my own novel, Stone Butch Blues.

Talk of a “casting call” for a movie of Stone Butch Blues is meant to bury the fact that I own all rights to my own novel.

I have not and will not assign any rights to any adaptations or any movie.

The author edition of SBBs will explain why in more detail in the back matter.

I will post here when the novel is up on lesliefeinberg.net and available in print. 

freececemcdonald:

Dear CeCe McDonald supporters, The rumors are true: CeCe is scheduled to be released from prison in January. She will wait and write a public statement about her release after she gets out of prison, because she wants to tell you all in her own words and own time. She would like to spend her first days out in privacy, with people she feels close to. Again, information about her release will be shared when CeCe feels it is the right time to do so. In the meantime, she and her support committee ask everyone to be patient. We are excited to throw her a party soon after her release. As soon as the venue and date are confirmed, we will announce! This party is a chance for everyone who has been supporting CeCe to come out and celebrate her release with her. Many of you are eager to send contributions of money or materials, to aid in her transition home. Keep an eye on the FreeCece Mcdonald Facebook page for specific ‘asks’ in the future. Right now, because of the incredible support of her community here in Minneapolis and around the world, she will be safe, comfortable, and cared for when she rejoins us. Please consider sending a donation to other incarcerated people or abolition movements. (Check out the Rainbow Defense Fund). CeCe has one more request: after her release, she’d like to make a scrapbook documenting the worldwide support she’s received. If you’ve organized an event, held a sign at a rally, or created art inspired by CeCe, please send it to mpls4cece@gmail.com. Thanks everyone for supporting CeCe, and for supporting her now in the way she most needs: with your patience.  ~ CeCe Support Committee

freececemcdonald:

Dear CeCe McDonald supporters,

The rumors are true: CeCe is scheduled to be released from prison in January. She will wait and write a public statement about her release after she gets out of prison, because she wants to tell you all in her own words and own time. She would like to spend her first days out in privacy, with people she feels close to. Again, information about her release will be shared when CeCe feels it is the right time to do so. In the meantime, she and her support committee ask everyone to be patient.
We are excited to throw her a party soon after her release. As soon as the venue and date are confirmed, we will announce! This party is a chance for everyone who has been supporting CeCe to come out and celebrate her release with her.
Many of you are eager to send contributions of money or materials, to aid in her transition home. Keep an eye on the FreeCece Mcdonald Facebook page for specific ‘asks’ in the future. Right now, because of the incredible support of her community here in Minneapolis and around the world, she will be safe, comfortable, and cared for when she rejoins us. Please consider sending a donation to other incarcerated people or abolition movements. (Check out the Rainbow Defense Fund).
CeCe has one more request: after her release, she’d like to make a scrapbook documenting the worldwide support she’s received. If you’ve organized an event, held a sign at a rally, or created art inspired by CeCe, please send it to mpls4cece@gmail.com.
Thanks everyone for supporting CeCe, and for supporting her now in the way she most needs: with your patience.

~ CeCe Support Committee

STONE BUTCH BLUES Author edition update: Making progress

11/25/13

I have received many, many messages from teachers, bookstore owners and publishers asking me questions about Stone Butch Blues.

Neither I, nor Minnie Bruce, are able to respond to individual requests. I am so ill that I pay for every online/communication, including this one, with my body.

I know that teachers are planning your next semester. So I am writing to update you all on the progress of the author edition of Stone Butch Blues.

Please help pass this message along to those who might need or want information!

TO TEACHERS: Until publication of the Author Edition of Stone Butch Blues, you have my permission to copy an out-of-print edition for your classes—as long as students don’t have to pay a penny above printing costs.

When the new edition is available, you and your students will be able to read it online and/or download the .pdf for non-commercial, non-profit use.

FINAL PROOF of SBBs

The final .pdf is being scoured over the early winter.

With the enormous efforts of a small team of dedicated and wonderful people, we have created an edition that can endure because it is published with collective understanding of the intent of the author, and therefore does not require any further individual communications regarding contracts or permission agreements.

This multi-media author edition will be readable online for free at lesliefeinberg.net. On that site you will also be able to find links to at-cost 12-point and 16-point print-on-demand editions of Stone Butch Blues.

SBB AUTHOR EDITION

The novel has a newly designed cover, fresh front matter and back matter for historical, social and political context.

The author edition is dedicated to the demand:
“Stop the U.S. war against (trans)women of color!
Free CeCe McDonald!”

I’ll post the slide show entitled “This is what solidarity looks like!” as part of the multi-media digital dedication to the struggle to “Free CeCe!” The slide show is hundreds of photographs of demonstrations and protest art that document the depth and breadth of the demand to “Free CeCe!”

The lesliefeinberg.net site will be home to the multi-media English-language edition that I hope will be downloadable to all digital devices. I hope the site will also be able to host donated free-read, non-profit Creative Commons translations of the author edition of Stone Butch Blues. For more information on translations, see back matter of the author edition at time of publication.

NO NEW COMMERCIAL RIGHTS!

TO PUBLISHERS/THOSE SEEKING PERMISSIONS FOR USE:
I am not, and will not be, able to communicate with individuals about any new or renewed contracts or permissions.

I MAINTAIN ALL DIGITAL RIGHTS:
As a proud member of the National Writers’ Union, Local 1981, I have maintained digital rights as a worker who writes. Beware malware sites that claim to house a free online read/download. The home for the online edition is lesliefeinberg.net.

TO BOOKSTORE OWNERS: I can’t handle distribution of my novel, so I’m creating this self-published print-on-demand edition that can be sold only for the cost of printing as set by lulu-com, not a penny more. This allows the book to be ordered from lulu.com by readers/teachers without me being involved.

TO READERS: To all those who have asked for signed copies, I appreciate you asking. I’m sorry that my health will not permit individual communications.

For now I’m battling in complex medical treatments and diagnostic work.

Check back on this page or subscribe for progress on Stone Butch Blues and for updates from the front lines of the healthcare front.

Message from Leslie Feinberg:I SURVIVED HOSPICEI’ve lived to fight another day—and to help pave new roads of science on which many people will travel.But Minnie Bruce and I were treated with cruel prejudice by the hospice agency management/physicians—not by the home aide, nurses or social workers. I ordered the agency out of our home and life. {I’ll post more on this later.}WHAT I DID WHILE I WAS IN HOSPICEI worked virtually every day I was in hospice.    I set out to finish life work that was mine to do, with the help of a group of caring and compassionate individuals—and particularly Minnie Bruce—who worked with me as a team. I’ll thank them later, each and all, in an organized and more lasting fashion. Together we were able to finish the following:1.    The front/back matter for Stone Butch Blues. The final PDF is being proofed {see post soon}2.    The slide show honoring CeCe McDonald—“This is what solidarity looks like!”—is finished, current to July 15, 2013 entries.WHY I WENT INTO HOSPICEIn late Spring 2013, day by day—sometimes hourly—I began to lose mobility, had growing difficulty swallowing, and had respiratory crises, among many other symptoms, and was living with excruciating and increasing pain.HOW I SURVIVED HOSPICEBut after 6+ weeks of being unable to swallow food, after I lost most of my body fat, something made me feel discernibly stronger.  My pain was reduced to strong sensations and discomfort. I was able to breathe more easily and to swallow.     I have been able to build greater strength with the compassionate, caring help of Minnie Bruce, friends, supporters and loved ones, and a committed medical team.
“Tick/+ borne epidemic:   IT’S NOT JUST LYME”I met with my own tick-borne diseases expert to consider a theory I had about what had happened. Protomyxzoa Rheumatica is a tick-borne protozoan infection in the malaria family. The Protomyxzoa is a biofilm that hides from the immune system in fatty tissue. protomyxzoa.org    I had been diagnosed with this protozoan infection in spring 2013 and had benefitted dramatically from treatment. But my health declined so fast I couldn’t continue treatment.Was it possible that, when  I’d lost virtually all body fat, the protozoan was pushed back?    My doctor called Dr. Stephen Fry, the physician and microbiologist who discovered Protomyxzoa Rheumatica. Dr. Fry sent me a message that my experience was a clinical confirmation of the presence of the biofilm.  “That was your diagnosis,” Dr. Fry reportedly told my doctor.    With this new information, I am treating the infection—and I still have more diagnostic work to do.SCIENCE, NOT PREJUDICE!The seriousness of the vector-borne epidemic referred to as “Lyme” is about a lot more than one dangerous disease being denied by medical officialdom in the U.S.     People who are sick and demand answers are too frequently labeled as having psychological problems, depression, eating disorders or seeking drugs/attention. When these “diagnoses” are made without medical methodology, they are not science.     Evidence-based medicine requires scientific methodology. Those who leave the path of science have nowhere to walk but in the historical ruts of prejudice.     As a lay scientist who is on the front lines of the Lyme+ wars, I’ll continue to write about my experiences as a way to bring suppressed information to those who need it. Please note carefully: Nothing written here is intended as medical advice.    I attach below an interview with Dr. Fry on his findings about Protomyxzoa Rheumatica and attempts to treat it.    Together, we are all making new health science that you and your loved ones may need. HEALTH CARE is a RIGHTNOT A PRIVILEGE!MONEY for HEALTH CARENOT FOR WARFARE!****Excerpt from interview with Dr. FryDr. Fry:  “[If] we want to talk about MS and neurodegenerative disease … there are about 75 papers dating back to the 1880‘s where physicians and laboratorians have discovered a malaria-like organism in patients withMS.“ http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdfLink to documentary film about Lyme+/“Under Our Skin”http://underourskin.com/Link to my research notes on Lyme/+ medical politics:“Casualty of an Undeclared War”http://www.transgenderwarrior.org/lymeseries.html****Photo by Alejandro Garcia, June 15, 2013 Pride/s celebration

Message from Leslie Feinberg:
I SURVIVED HOSPICE

I’ve lived to fight another day—and to help pave new roads of science on which many people will travel.
But Minnie Bruce and I were treated with cruel prejudice by the hospice agency management/physicians—not by the home aide, nurses or social workers.
I ordered the agency out of our home and life. {I’ll post more on this later.}

WHAT I DID WHILE I WAS IN HOSPICE

I worked virtually every day I was in hospice.
    I set out to finish life work that was mine to do, with the help of a group of caring and compassionate individuals—and particularly Minnie Bruce—who worked with me as a team. I’ll thank them later, each and all, in an organized and more lasting fashion. Together we were able to finish the following:

1.    The front/back matter for Stone Butch Blues.
The final PDF is being proofed {see post soon}
2.    The slide show honoring CeCe McDonald—“This is what solidarity looks like!”—is finished, current to July 15, 2013 entries.

WHY I WENT INTO HOSPICE

In late Spring 2013, day by day—sometimes hourly—I began to lose mobility, had growing difficulty swallowing, and had respiratory crises, among many other symptoms, and was living with excruciating and increasing pain.

HOW I SURVIVED HOSPICE

But after 6+ weeks of being unable to swallow food, after I lost most of my body fat, something made me feel discernibly stronger.  My pain was reduced to strong sensations and discomfort. I was able to breathe more easily and to swallow.
    I have been able to build greater strength with the compassionate, caring help of Minnie Bruce, friends, supporters and loved ones, and a committed medical team.

“Tick/+ borne epidemic:   
IT’S NOT JUST LYME”

I met with my own tick-borne diseases expert to consider a theory I had about what had happened. Protomyxzoa Rheumatica is a tick-borne protozoan infection in the malaria family. The Protomyxzoa is a biofilm that hides from the immune system in fatty tissue. protomyxzoa.org
    I had been diagnosed with this protozoan infection in spring 2013 and had benefitted dramatically from treatment. But my health declined so fast I couldn’t continue treatment.
Was it possible that, when  I’d lost virtually all body fat, the protozoan was pushed back?
    My doctor called Dr. Stephen Fry, the physician and microbiologist who discovered Protomyxzoa Rheumatica. Dr. Fry sent me a message that my experience was a clinical confirmation of the presence of the biofilm.  “That was your diagnosis,” Dr. Fry reportedly told my doctor.
    With this new information, I am treating the infection—and I still have more diagnostic work to do.

SCIENCE, NOT PREJUDICE!

The seriousness of the vector-borne epidemic referred to as “Lyme” is about a lot more than one dangerous disease being denied by medical officialdom in the U.S.
    People who are sick and demand answers are too frequently labeled as having psychological problems, depression, eating disorders or seeking drugs/attention. When these “diagnoses” are made without medical methodology, they are not science.
    Evidence-based medicine requires scientific methodology. Those who leave the path of science have nowhere to walk but in the historical ruts of prejudice.
    As a lay scientist who is on the front lines of the Lyme+ wars, I’ll continue to write about my experiences as a way to bring suppressed information to those who need it. Please note carefully: Nothing written here is intended as medical advice.
    I attach below an interview with Dr. Fry on his findings about Protomyxzoa Rheumatica and attempts to treat it.
    Together, we are all making new health science that you and your loved ones may need.

HEALTH CARE is a RIGHT
NOT A PRIVILEGE!

MONEY for HEALTH CARE
NOT FOR WARFARE!

****

Excerpt from interview with Dr. Fry

Dr. Fry:  “[If] we want to talk about MS and neurodegenerative disease … there are about 75 papers dating back to the 1880‘s where physicians and laboratorians have discovered a malaria-like organism in patients with
MS.“

http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf

Link to documentary film about Lyme+/
“Under Our Skin”
http://underourskin.com/

Link to my research notes on Lyme/+ medical politics:
“Casualty of an Undeclared War”
http://www.transgenderwarrior.org/lymeseries.html

****
Photo by Alejandro Garcia, June 15, 2013 Pride/s celebration



TODAY IS THE LAST DAY TO SUBMIT ‘FREE CECE!’ photos for Stone Butch Blues dedication

"This is what solidarity looks like!” is a slide show documenting the breadth of the peoples’ verdict: "Free CeCe "

This slide show strives to reflect the geographic, social and political scope of the demand to “Free CeCe McDonald!” and in defense of the right to fight back against white-supremacist, anti-woman, transphobic attack.

{supportcece.wordpress.com}

Related struggles are visible as demands in the context of prides and protests.

BE A PART OF THIS SBBs DEDICATION to ‘FREE CECE!’

The photographic tribute to CeCe McDonald’s struggle will be part of the digital, multi media dedication of the free/at-cost 20th-anniversary author’s edition of Stone Butch Blues.

More than 60 photographer/artist/activists have contributed
Photographer/artist permission, photograph/art information and captions.

Do you have a photo to contribute? I’m also especially looking for more Twin Cities photos!

Send photos, photo credit, your permission, the DATE THE PHOTO was made {the slides are chronological}, location, event, and any other photo information to:   transgenderwarrior@gmail.com

FREE CECE!

Stone Butch Blues: making production progress!

no-cost & at-cost
STONE BUTCH BLUES

The interior of the novel—
front matter, text & extended back matter—
went to a book designer this morning.

Teachers: We’re working hard to get the
12-pt. edition out in August for
your fall/winter semester.

Check back here
or subscribe for updates.

July 10, 2013

Central New York Pride/sSyracuse, NY6/15/13

Central New York Pride/s
Syracuse, NY
6/15/13

Photo credit: Boston branch, Workers World PartyPhoto caption: Leslie Feinberg, Boston, 1984.I had already been infected with tick-borne diseases for a decade.6/11/13Message from Leslie Feinberg:I want to be the one to tell you that I am failing to thrive very rapidly, and a local hospice expert is working to set up care in our home. In the meantime, messages of personal support are welcome, but I can’t respond. I can’t do interviews or videos. Please no commercial inquiries of any kind.Minnie Bruce and I welcome your messages of support at: minniebrucepratt@yahoo.comPlease do not send these messages to our other e-mail accounts! And—please do not ask for details or send medical advice.I suffered with tick-borne diseases for 35 years without treatment. In the five plus years since I have been in treatment, I have been diagnosed with late-stage Lyme along with serious coinfections including Babesiosis, Protomyxzoa Rheumatica, and Bartonella. My 20-year pattern of periodic immuno-suppression has become chronic for quite some time.My body is failing so fast that I can’t undergo more diagnostic and treatment attempts. It is difficult for me to swallow, walk, breathe, talk and write. This sharp decline, evidenced in labs and in life, has forced me to set up home hospice care quickly. My goal is to survive hospice. But I set out to do so with this reminder: illnesses and deaths are not personal failings. Nor is hospice a surrender. While it might not be realistic or possible, I have a fierce determination to get out in the streets with you all at the Central New York Pride March this Saturday, June 15.I will continue to work in hospice—if not now, when?—to finish the Stone Butch Blues 20th anniversary author’s edition.  {For updates on this free online-read/at cost print-on-demand, www.tumblr.com/blog/leslie-feinberg}I will continue to work on the slideshow honoring CeCe McDonald. Titled “This is what solidarity looks like,” the slideshow is part of a multi-media dedication of Stone Butch Blues to CeCe. The slide show demonstrates the breadth of the demand to “Free CeCe!” {supportcece.wordpress.com}The deadline for “Free CeCe!” photo submissions is July 1, 2013.Send solidarity photos/art, permission form, and photo information including date/location/photographer to: transgenderwarrior@gmail.comSee permission forms: www.iacenter.org/lgbt/feinberg-mcdonald100712/To subscribe for updates:Leslie’s Facebook:https://www.facebook.com/leslie.feinberg.tgwarrior?ref=tn_tnmnLeslie’s tumblr:http://www.tumblr.com/blog/leslie-feinbergLeslie’s twitter:https://twitter.com/lesliefeinbergMinnie’s Bruce’s Facebook:https://www.facebook.com/minniebruce.pratt***Health care for free—not for profits!Jobs, homes, education, recreation—not wars at home & abroad—covert & overt—that only profit the 1%!Free CeCe McDonald, B. Manning & Lynn Stewart!End police brutality & racist mass incarcerationSolidarity with immigrant workers, Muslims,oppressed peoples and workers around the world!

Photo credit: Boston branch, Workers World Party
Photo caption: Leslie Feinberg, Boston, 1984.
I had already been infected with tick-borne diseases for a decade.

6/11/13
Message from Leslie Feinberg:

I want to be the one to tell you that I am failing to thrive very rapidly,
and a local hospice expert is working to set up care in our home.

In the meantime, messages of personal support are welcome,
but I can’t respond. I can’t do interviews or videos.
Please no commercial inquiries of any kind.

Minnie Bruce and I welcome your messages of support at: minniebrucepratt@yahoo.com

Please do not send these messages to our other e-mail accounts!
And—please do not ask for details or send medical advice.

I suffered with tick-borne diseases for 35 years without treatment. In the five plus years since I have been in treatment, I have been diagnosed with late-stage Lyme along with serious coinfections including Babesiosis, Protomyxzoa Rheumatica, and Bartonella. My 20-year pattern of periodic immuno-suppression has become chronic for quite some time.

My body is failing so fast that I can’t undergo more diagnostic and treatment attempts. It is difficult for me to swallow, walk, breathe, talk and write. This sharp decline, evidenced in labs and in life, has forced me to set up home hospice care quickly.

My goal is to survive hospice. But I set out to do so with this reminder: illnesses and deaths are not personal failings.

Nor is hospice a surrender.

While it might not be realistic or possible, I have a fierce determination to get out in the streets with you all at the Central New York Pride March this Saturday, June 15.

I will continue to work in hospice—if not now, when?—to finish the Stone Butch Blues 20th anniversary author’s edition.  {For updates on this free online-read/at cost print-on-demand, www.tumblr.com/blog/leslie-feinberg}

I will continue to work on the slideshow honoring CeCe McDonald. Titled “This is what solidarity looks like,” the slideshow is part of a multi-media dedication of Stone Butch Blues to CeCe. The slide show demonstrates the breadth of the demand to “Free CeCe!” {supportcece.wordpress.com}

The deadline for “Free CeCe!” photo submissions is July 1, 2013.

Send solidarity photos/art, permission form, and photo information including date/location/photographer to: transgenderwarrior@gmail.com

See permission forms: www.iacenter.org/lgbt/feinberg-mcdonald100712/

To subscribe for updates:

Leslie’s Facebook:
https://www.facebook.com/leslie.feinberg.tgwarrior?ref=tn_tnmn

Leslie’s tumblr:
http://www.tumblr.com/blog/leslie-feinberg

Leslie’s twitter:
https://twitter.com/lesliefeinberg

Minnie’s Bruce’s Facebook:
https://www.facebook.com/minniebruce.pratt

***

Health care for free—not for profits!

Jobs, homes, education, recreation—
not wars at home & abroad—covert & overt—
that only profit the 1%!

Free CeCe McDonald, B. Manning & Lynn Stewart!
End police brutality & racist mass incarceration

Solidarity with immigrant workers, Muslims,
oppressed peoples and workers
around the world!

From Leslie:

Free/at-cost 20th anniversary

author’s edition of

Stone Butch Blues

 

Production appears to be

on schedule for July 15, 2013

 

Please check back here then

for more information.

STONE BUTCH BLUES
*** MAY DAY 2013 update***

My illness has delayed publication
of the free-read digital & at-cost print-on-demand
20th-anniversary author edition of Stone Butch Blues
—dedicated to “Free CeCe McDonald!”
{supportcece.wordpress.com}

However, thanks to the teamwork
of a small group of wonderful individuals,
the delay may only be weeks.

Teachers:
It’s realistic to expect
free-read online edition
free downloadable PDF
by July 15, 2013 {maybe sooner!}

Check back here: June 1
for progress on free-read digital
and at-cost print-on-demand editions

NEXT GOALS
1. post slide show dedicated to “Free CeCe McDonald!”
2. post personal health update

I am too ill to respond to one-on-one
messaging at this time.

LESLIE STATES “NOT GUILTY”—
JUDGE CONVICTS BUT STAYS SENTENCE

Leslie Feinberg declared she/ze was “not guilty” today (2/4/13) on a charge of 3rd degree gross misdemeanor (property damage) for spray painting “Free CeCe Now” on the walls and pillars of the courthouse/jail in Minneapolis.

Based on police reports of Leslie’s actions, which were not in dispute, the judge found Leslie “guilty,” and asked if she/ze had anything to say before sentencing.

Leslie said: “I am a revolutionary journalist and member of the National Writers Union, UAW Local 1981. I am not guilty of any wrongdoing. I delivered the people’s verdict on the jailhouse walls. The real crimes are going on behind the walls where CeCe McDonald is imprisoned.”

"By sentencing CeCe McDonald to prison, Minneapolis sent a green light to neo-fascists at a time of growing racist lynching and massacres in the U.S. CeCe was attacked and survived at a time when an increasing number of transwomen of color are being assaulted and murdered.

"Racist mass incarceration is the crime, as even a former Hennepin County prosecutor admitted in an article—that Minnesota has the greatest racist disparity in sentencing of any state in the U.S.

"The world is watching CeCe McDonald’s struggle. I’m proud to add my voice to the tens of thousands of people who demand: Free CeCe!"

The judge admitted that Leslie’s action was an act of “civil disobedience.”

Then the judge stayed the imposition of sentence for 2 years. During that time, Leslie is on informal probation. This means if Leslie is not convicted of any additional “property damage” for 24 months, the 3rd degree gross misdemeanor charge will be dismissed.

The prosecutor did not pursue court expenses or a fine. Leslie walked out of the courtroom without having to perform community service or report to a probation officer.

Leslie was ordered to pay more than $1300 for the erasure of the political demand she/ze wrote on the wall. Leslie stated after court, “I refuse to pay for the censorship of the political demand Free CeCe Now!

Local Free CeCe organizers were present in the courtroom. Many CeCe supporters in the U.S. and around the world sent tweets, e-mails, faxes, and made phone calls to help deliver the people’s verdict—Free CeCe!—to the Minneapolis mayor and prosecutor.

(Please take action & repost)
Message from Leslie Feinberg:

I am ordered to begin trial in Minneapolis today,
Feb. 4 at 9 am (Central U.S. time zone).

The jury trial is expected to last about 2 days.

I am charged with 3rd-Degree Gross Misdemeanor
for my June 4 solidarity action demandi
CeCe McDonald. The charge threatens
a maximum 1 year sentence.

Help deliver the peoples’ verdict:
‘FREE CECE!’

Send messages to Minneapolis Mayor R.T. Rybak
and the city prosecutor — a mayoral political appointee:

Minneapolis Mayor R.T. Rybak — twitter: @MayorRTRybak; email: rt@minneapolis.org; fax: (612) 673-2305;
phone: (612) 673-2100.

Minneapolis City Attorney Susan Segal —
email: Minneapolis311@ci.minneapolis.mn.us;
fax: (612) 673-2189;
phone: (612) 673-2010.

Loading

Loading

Close
×

Well this is a bit embarrassing

It appears that the requested content could not load or is not available anymore, however there's plenty more cool stuff to be found on our home page.

Close
×

Loading

Loading

Please wait while we load your content

Leslie Feinberg I am so ill at this time, that this blog--digital social media as a whole--is the only way I can communicate. More, when I can.

Close
×