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Volume 1, Issue 5    •    HOLIDAY EDITION     •   Published Biweekly

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Spotlight

Photo of Phoebe Sparrow Wagner

Phoebe Sparrow Wagner


Phoebe Sparrow Wagner is an award-winning poet, author, and visual artist. Having experienced multiple hospital stays due to her label of "paranoid schizophrenia" complicated by neurological Lyme disease and narcolepsy, Wagner no longer believes in either mental illness diagnoses, psychiatry, or the efficacy of psychiatric medications, though she still takes them, having been on them for decades. She does public speaking, poetry readings and teaches art. In addition to creating life-size paper mache sculptures and her other work as a poet and artist, Phoebe enjoys botany and jewelry-making.
 
I spoke by phone with Phoebe Sparrow Wagner at her home in Vermont on December 21st.  She was warm, down-to-earth, and open, and we quickly dove directly into the interview:
 
Do you remember when you began writing poetry?  What inspired you to start?
 
I remember exactly when it happened.  Throughout my life, despite my long psychiatric history, I have had what I call five miracles.  Poetry was the second miracle...
 
Would you be willing to share all five?
 

Sure.  The first happened shortly after I left Brown [University].  I had been hospitalized and was out of school for about a year, first at the hospital and later at a halfway house.  Afterward, I decided to transfer temporarily to a small college in upstate New York. There I signed up for a natural history class.  I didn't know a maple from an oak and didn't care, but the class promised three field trips, every week.  That sounded like pretty good exercise, so I decided to try it.
 
The first day of class, I had just started off down a path with the rest of the class when the professor knelt and drew our attention to a little, blue-purple flower.  She identified it, explaining that we needed to know about it for a quiz. After the otherPhoto of the flower of heal-all, or prunella vulgaris students had all seen the flower, my professor noticed me, lagging behind.  She told me I had to take a look at that flower.  When I did, it was like lightning struck - I fell head over heels in love!  I had never seen anything as beautiful as that little flower, which is called "self-heal" or "heal-all:" prunella vulgaris. At that moment, I began my lifelong love affair with nature.  I found it surprisingly easy to learn about plants.  In fact, I learned so quickly that I thought, "How can I do this?" But it was passion, and it was love.
 
Poetry was the second miracle. I used to despise poetry, and poets were even worse because they produced the junk.  But at the time, I had a roommate who was a poet.  I really liked her, but because she was a poet, I had to listen to her poems.  They were excellent, but I just didn't like poetry.  One day, she came into my room and recited the poem, Spring and Fall: To a Young Child.  It took maybe a minute or two, but by the time she had finished reciting, the second miracle had happened: I was converted from hating poetry to absolutely having to spend my life with it.
 
I spent the next two years just reading and reading poetry.  Not in any planned way; one poem would lead me to another and one author to another.  After those years, I gave myself permission to finally write.  I guess I began publishing quite early and won some prizes, as well.
 
The third miracle is one I don't often talk about.  It had to do with a psychiatric drug that I would never want to take again.  But at the time, the effect was just amazing.  Two weeks after starting, people could clearly see a difference in me. I was reading. I was socializing.  That experience taught me that I can learn, read, and be excited about things.  It's possible that the difference was just because it wasn't as awful as the other drugs, which had been horrible.  It was still a miracle.  Yet I wouldn't take it again, because of the side effects.  It made me very sleepy, which was especially bad given that I have narcolepsy.  And it caused obesity.  But the third miracle was realizing that I have a mind that I can use.
 
The fourth miracle was art.  I've heard voices for decades, but I woke one morning with a voice in my head.  It was saying, "You have to build a human."  It was different, because it was inside my head, not outside, and it wasn't saying anything harmful.  So, I figured, "Ok, this seems harmless, and I think I can do what it's saying."  I spent the next two months building a life-size woman from paper mache.  I was hooked, the moment I started.  Since then, there hasn't been a day when I haven't done some sort of art.
 
The fifth and latest miracle was about two years ago.  A friend of mine mentioned that she was reading Proust, which led to me telling her that I used to know a little French.  Then, I opened up some text in French and that was another miracle of falling in love - again with something I'd hated.  In high school, I barely spoke in English or French.  So, to suddenly fall in love with a language, that was very unexpected.  Fortunately, my love of art hasn't lessened.  I just have another passion, now. I study, read, listen to music and news - even write poetry - all in French. 
 
It sounds as if each of these miracles was an expansion of yourself - growing suddenly into a new area.
 
Yes.  It's good that they were sequential, rather than all at one time.  It would have been too much to experience at once.  They have certainly made for a rich life.
 
Your art and poetry draw on very powerful personal experiences.  Was it difficult to publish works of such personal meaning or did the openness feel natural?
 
I think that if I knew everything my words were conveying, I might have trouble.  The subconscious does the work.  I can't write a poem, knowing too much about what's going to happen.
 
It's clear that your life has been the basis of your art, and you've explained a little of how art affects your life.  What does your art provide for you, specifically?  Does it take anything away, in return?
 
Without my art, I have no life.  There is a psychiatric drug that I still take - the only one.  Without it, I stopped doing art.  I feel suicidal when I can't do art.  So, I made that trade off.  It's a wrinkle, but until there are terrible side effects that I can't tolerate, I'm willing to take it.
 
I'd like to ask you about your memoir, Divided Minds, that you wrote in collaboration with your twin sister.  You've since said that if you were writing it today, it would be a very different book.  Would you talk a little about that?
 

Yes.  Around the same time that art changed my life, I read Mad in America by Robert Whittaker.  I was blown away.  I read Anatomy of an Epidemic, after that.  From there, I moved on to other books on the same subject, and they changed my thinking, completely.  When I moved to Vermont, about six years ago, I found someone who acted as my therapist.  She's wonderful.  We never talked about "symptoms," no matter how disordered my behavior, thoughts, or feelings.  She told me that she believes trauma is the basis of every so-called mental illness.   After working with her for about three years, I don't have anything that people would call "symptoms," anymore.  Nothing.  They went away gradually, as I started to reconceptualize them, not as something I should listen to, but something like very intense memories.  They aren't memories, of course, but the point is to ask myself "What is this trying to tell me?" instead of assuming it's always bad. Only listening to the surface wouldn't be good for me, but understanding the meanings has been very helpful.  For example, there was a time when I heard music, all the time.  Nobody asked me to write it down.  Instead, they tried to drug me out of it.  But it conveyed something that needed to be understood.
 
Doctors will talk about a "constellation of symptoms" - the constellation of schizophrenia or bipolar or whatever.  What they forget is that the stars have no objective relationship to each other. Orion is a constellation in the sky, and he doesn't exist.  It's invented.  We understand that constellations are imaginary and mythical.  So, doctors see a "constellation" of actions and emotions, and they might think it means "bipolar."  That's a construct of psychiatry.  Symptoms imply that there's something wrong with me or with you.  But nothing is wrong with us.  We're perfect, the way we are.
 
What was it like to co-author a memoir with your sister?  Did you have different perspectives?
 
As twin sisters, we were always competing.  People always compared us.  We weren't just allowed to be twins and love each other.  So, when we first began writing, we fought a lot.  But by the end of the editing, we were like, "Hey, we're really cooking here!"
 
You've mentioned authors in the Mad movement who have influenced you.  Do you know of any visual artists who explore this topic, other than you?
 
 
I don't know of a lot of artists.  I don't go to museums. I don't know a lot about art, and I don't look to others to give me ideas.  Maybe I should.  
 
One day, about ten years ago, I went to Google to see what restraints looked like.  I had been restrained so many times that I wanted to see how it looked to others.  There was nothing on Google.  So, I said, "I'm going to remedy this.  I'm going to draw pictures of what happened to me.  I'm going to put them on Google and otherwise put them out there."  I wanted to pull the veil away.  Today, if you Google "four point restraints." you'll see my art, as well as the art other people have done.
 
I there anything you wish you had known, when you first went into the mental illness system?
 
I read Thomas Szasz [psychiatrist, social critic, and author of The Myth of Mental Illness] when I was in high school.  I thought he was a genius.  So, when I was first hospitalized, during my first year of college, I saw the institutionalization that was happening in there, and I was terrified.  That was interpreted as "hysterical."  Wanting to leave only made me look crazy to the hospital workers. I eventually became institutionalized and took on that same groupthink.  It took a long time to get rid of that.  I think hospitals do terrible damage to people, especially young people.
 
What do you think about programs such as Soteria and Alyssum, which provide people with space to find meaning in subjective experiences without coercion or use of force?
 

Well, the first place I went was Alternatives  I liked the people there but, unfortunately, they are a little too medically oriented. The people at Alyssum are amazing humans, and they treat you like you're one of them!  That means a lot when you're hearing voices that tell you that you're a piece of shit. When I left, they gave the notes they'd kept.  They don't keep permanent records and there's no secrecy.  I read what they had written; there was none of the clinical nastiness of the hospital.  The only problems with Alyssum are that you can't stay long enough and there aren't enough of them.
 
Loren Mosher, who started the first Soteria House, didn't consider the people who participated to have an illness.  I like the way he treated people.  People got better without drugs or coercion.  But I think it's the case that you have to have a label of mental illness to be accepted to the Soteria here in Vermont. Also, there aren't enough of them. But I don't know, personally, as I was older when I applied to go there, and they like to take young people.
 
What do you think the difference might be, if there were enough programs like Alyssum and Soteria House to serve everyone's need?
 

It would make a huge difference!  But it's also important that kids are socialized by watching television ads that tell them to take a certain drug or by watching a movie that says depression is an illness. Kids are put on antidepressants that can make them more suicidal or hook them on drugs that don't really help.  If it's trauma that's caused the depression (and I think it always is), drugs are not going to help.  They just cover over the problem.  
 
I think the whole mental health system should be trashed, but not without putting something better in its place.  People suffer hugely.  But that system taught me to consider my natural experiences as an illness and that there's something wrong with me, rather than something to listen to and talk about.  None of those doctors ever asked the contents of what I was hearing.  They just wanted it to stop.
 
Thanks so much for your willingness to share your thoughts, experiences, and memories.  Before we close, is there anything of which you'd like people to be more aware?
   
Yes.  Permission to use restraints needs to be abolished, so that restraint isn't an option of last resort for hospital staff.   If a hospital ever uses restraints on someone, they should have to explain why to a court, the same as other people who cause injuries while trying to defend themselves.  Restraint is traumatic - it can kill someone's spirit.  And as long as hospital staff have that option for control in the back of their heads, they will use it.
 
If restraints are not permitted, hospitals will have to think about how they're going to help a person.

Related Resources




Regarding Phoebe Sparrow Wagner:
In opposition to seclusion and restraint: In opposition to forced drugging:
Non-psychiatric approaches to the experience of hearing voices:
 
News
 

National: 
 
  Under current law, medical providers may release personal medical records without a patient's consent only if doing so would mitigate an emergency with "clear and imminent" threat to safety.  A new proposal announced by the Department of Health and Human Services would broaden what qualifies an emergency under HIPAA, enabling medical providers to quickly share private medical info with families, caregivers, and hospitals, to name a few. 

If passed, this bill could be particularly harmful to psychiatric survivors, since what is considered a psychiatric "emergency" is already subjective, allowing police and psychiatric workers to forcibly detain, restrain, and drug thousands of people with mental health labels, each year. 

It is also worth noting that survivors of domestic violence may be particularly affected, as much of what psychiatry labels as disorder are attempts to adapt to trauma or social issues.  Victims of domestic violence are at significantly greater risk of receiving psychiatric labels.  For many survivors of domestic violence, medical records getting into the wrong hands could cause serious harm.
   

 
Several recent scientific studies have shown that COVID19 survivors are at high risk for long-term neurological problems.  Some issues, such as increased depression and anxiety, could be related to the trauma of experiencing a serious illness and going through isolation. However, one of the most common complaints from COVID survivors is "brain fog" - chronic and often disabling difficulties with memory, focus, and energy. 

“This is a phenomenon that is really quite real and quite extensive,” Dr Anthony Fauci stated at a conference, earlier this month.  "Maybe 20 to 25% of those people have an unexplainable symptom complex without any laboratory data to indicate why they may be feeling that way."  Dr Fauci went on to say that symptoms related to "brain fog" can last weeks to months, sometimes improving and then worsening.  The doctor noted that these issues are suggestive of encephalopathy, or physical damage to the brain.  According to one recent study, encephalopathy was present in 31% of patients assessed, and was associated with increased morbidity and mortality, independent of respiratory disease severity.

“It’s not only an acute problem. This is going to be a chronic illness,” said Wes Ely, a pulmonologist and critical care physician at Vanderbilt University Medical Center who studies delirium during intensive care stays. “The problem for these people is not over when they leave the hospital.”
   


California:
 
  A psychiatric facility in Napa, has seen three times more of its patients infected with COVID19 in the past two weeks than in the previous six months.

Between May 16th and December 19th, 24 patients tested positive for COVID19.  However, between December 10th and 24th, an additional 72 patient cases were reported.  (Source: California Department of State Hospitals)

As a result of the increase in cases, hospital staff will have mandatory daily testing, despite the recent outbreak affecting patients at a much higher rate than staff (Of 114 staff testing positive since March 20th, only 20 were reported in the last two weeks).  Current patients who have the coronavirus may be isolated in their rooms. If space is needed, the facility may group all patients who tested positive together. 
   
 
Delaware:
 
 
Naloxone (also known by its brand name, Narcan) helps to restore breathing in people during an opioid overdose. Due to an increasing number of Delawareans dying from opioid overdose, along with along with the difficulty of in-person access due to COVID, the Delaware Department of Public Health has announced that residents can now order naloxone confidentially by mail, at no cost to them.

More information can be found at this DPH site.  In Delaware and most other states, Narcan nasal spray remains available at pharmacies without a prescription.  A list of regulations by state can be found here.
   
 
Michigan:
 
 
In March, local news agency WXYZ published its investigation into patient deaths occurring either within psychiatric facilities or within 48 hours of discharge.  When such a death occurs, Michigan’s Department of Licensing and Regulatory Affairs (LARA) requires that the hospital inform the state.  However, out of more than 150 deaths reported since 2016, journalists found that the state had investigated "virtually none." The news agency then reached out to the Michigan Protection and Advocacy Service which, as a result, opened its own investigations into 71 of the deaths.

Following this report, Michigan legislature created Bill 813 to require LARA to investigate all deaths deemed suicide or "unknown cause," occurring either within a psychiatric facility or within 48 hours of discharge from such a place.  This month, the bill passed both branches unanimously and now awaits the Governor's signature.
   
 
North Carolina:
 
 
Robert Ward, an assistant public defender in North Carolina, represents clients in involuntary commitment hearings.  In recent years, he noticed his caseload increasing and asked the local court clerk for the number of involuntary commitment petitions (IVC's) that had been filed in Mecklenburg County, where Ward practices.  He learned that the number of petitions had more than doubled over the last decade, even accounting for population growth, from 6,103 a year to 14,328.

When Ward sought information on whether this trend was state-wide, he discovered that no one was tracking statewide data on involuntary commitment. So, he partnered with the Promise Resource Network, an agency in Charlotte run entirely by psychiatric survivors.  Together, they sought out and compiled the data, themselves.  They discovered that forced psychiatric treatment under involuntary commitment increased by 91 percent over a decade, far outpacing the state’s population growth.  They also discovered that although counties do track involuntary commitments, the state does not report them separately to other agencies or the public. The result: the larger problem of IVCs gets obscured.

The sharp increase in the use of involuntary commitment mirrors national trends. A recent study found that the rate of involuntary commitment is climbing three times faster than the population growth in 25 states for which IVC data is available.

Graph of Involuntary Commitment Petitions filed in North Carolina over last decade
   


Vermont:
 
EIP Review Committee Special Meeting to be Held in January 2021
   
Brattleboro Retreat’s explosive increase in restraint, seclusion and forced drugging to be topic.
 
The State of Vermont’s Department of Mental Health will convene a special meeting of the Emergency involuntary Procedures Review Committee in January 2021 to discuss the emergency involuntary procedures (EIP) data from the Brattleboro Retreat, according to DMH Commissioner Sarah Squirrel.
 
During a virtual meeting with MadFreedom founder Wilda White on December 21st, Commissioner Squirrell agreed to schedule the special meeting rather than wait until March 2021 to discuss the data at the regularly scheduled, quarterly meeting of the EIP Review Committee.
 
MadFreedom requested the special meeting following the December 11th meeting of the Emergency Involuntary Procedures Review Committee at which the Brattleboro Retreat failed to send a representative despite being legally required to do so.  The Brattleboro Retreat did not respond to Mad Media Matters’ emails and telephone messages asking why it failed to attend the December meeting.
 
The Department of Mental Health did append to the Minutes of the December 11th meeting, a note from Brattleboro Retreat CEO Louis Josephson. “We’ve had recent changes in our nursing leadership and QI department,” the note read, “and unfortunately this meeting was lost in the transition of responsibilities.” Josephson vowed that a Retreat representative would attend the next scheduled meeting.
 
The Retreat’s absence at the December meeting means that data covering the period April through June has gone undiscussed for more than six months. At the October 2020, the Retreat said it was “caught off guard,” and was unprepared to discuss the data. The meeting’s facilitator thereafter rescheduled the discussion for the December 2020 meeting. However, the Retreat was a no-show.
 
Every quarter, by law, the Vermont Department of Mental Health (DMH) issues a report about the instances of restraint, seclusion and forced drugging at psychiatric hospitals in Vermont.
 
The second quarter data revealed that the Brattleboro Retreat's use of restraint, seclusion and forced drugging increased significantly to more than five times the national average and 2.5 times higher than Rutland Regional Medical Center (RRMC) and the Vermont Psychiatric Care Hospital (VPCH).
 
Commissioner Squirrell also indicated during the meeting with MadFreedom’s founder that DMH would be using more of its Mental Health Block Grant funds to improve practices to reduce the use of emergency involuntary procedures. “So, I’m probably going to bring in Kevin Huckshorn as well,” Squirrel said, “to participate in some of those meetings.”
 
Dr. Kevin Ann Huckshorn led the development of Six Core Strategies to Reduce Seclusion and Restraint Use, an evidence-based model to prevent violence and the use of seclusion and restraint.
 
Commissioner Squirrell also reported that more comprehensive data pertaining to “voluntary” Brattleboro Retreat patients would be available by the end of January 2021. That data will also be discussed at the special meeting.

The meeting date will be announced in Mad Media Matters when it is set, as well as posted to our Facebook account.  If you are concerned about the use of physical and chemical force in Vermont hospitals, we encourage you to attend.
 
   
Hospitals shown to use force just as often on voluntary and involuntary patients
 
In the past, the State of Vermont has only published data on the frequency of forced drugging and restraint against involuntary psychiatric patients, failing to track use of force against voluntary patients.  Now, for the first time, the State has revealed how often force is used on all psychiatric patients, showing that there is no significant difference between the two populations.  (Note: AJ Ruben of Disability Rights Vermont has noted that there are significant measures missing from this data.)

Given that there are roughly twice as many voluntary as involuntary patients in Vermont, this new data on voluntary patients represents two thirds of all psychiatric patients.  Susan Stefan, a well-known expert on U.S. mental disability law, wrote a 2013 legal article in which she addressed the discrepancies in public perception and legal rights of both populations. In it, she states:

"I  have  spent  a  considerable  amount  of  time  inside  state  institutions  in  fourteen  states  and  the  District  of  Columbia,  and  in my experience, there is no difference between the loss of liberty suffered  by  civilly  committed  and  voluntary  patients  in  state  institutions.  Nor  is  there  any  difference  in  the  control  exercised  by  those  institutions  over  the  lives  of  civilly  committed  and  voluntary patients."

Vermont's current data would seem to affirm that Stefan's statement remains relevant today. 

While the current data pertains to all use of force against psychiatric patients by staff, readers wishing to find a list instances in which force has been used in confirmed violation of patients' rights (as well as other documented instances of patient rights violations) in Vermont psychiatric facilities will find that information here.
   
   
Arts
 
 
Images provided by the artist, Phoebe Sparrow Wagner

MosaicPainting by Phoebe Sparrow Wagner, depicting multiple versions of Santa Claus, with a naked figure curled inside of an ornament in the center of the image

By Phoebe Sparrow Wagner

Mosaic: a word that means from the muses, from Moses
and a work of art created from broken fragments of pottery,

stone or glass.
 
 
Even the first time, surrender was not hard,
though the grownups and mothers
with their drinks and swizzle sticks
undoubtedly thought it so when you volunteered 
your only present that 10th Christmas 
to a younger child who wouldn’t understand
being giftless at the tail end of a line to Santa,
nor your inherent sin in being born.
Such generosity should have stayed
between your concept-of-God and you,
but grownup admiration (you could not hope
to make your act unpublic) sullied the soapImage of a naked woman huddled in a corner
of any generosity’s power to cleanse you.
Other atonements followed, only one 
almost perfect, being perfectly anonymous
spoiled by an accomplice’s later telling.
Perfection? You never made that grade, 
your terrible love for God demanding all life
from your life. No one told you, “Live a lot,” 
not in words that made it matter, though
they doubtless counseled, “Live a little.”
You were always in school to be perfect, 
never knowing that life is a classroom 
where one learns to love flaws 
by throwing bad pots, to shatter 
them with careful hammer, 
assembling beauty from broken things.

Márgarét, áre you gríeving
Over Goldengrove unleaving?
Leáves like the things of man, you
With your fresh thoughts care for, can you?
Ah! ás the heart grows older
It will come to such sights colder
By and by, nor spare a sigh
Though worlds of wanwood leafmeal lie;
And yet you wíll weep and know why.
Now no matter, child, the name:
Sórrow’s spríngs áre the same.
Nor mouth had, no nor mind, expressed
What heart heard of, ghost guessed:
It ís the blight man was born for,
It is Margaret you mourn for.
 

Painting of a woman sleeping while a vulture flies above her, clutching at a dark object
"Nightmares ripping at my dreams." - PSW
 
 
Video
 
 
If you're feeling overwhelmed by current events, wishing you could do something real and practical to change things, you might want to look into mutual aid. This video by Dean Spade and Ciro Carri explains the concept and gives concrete examples of how we can draw together to have a positive impact in areas that are important to each of us. As a bonus, the video was created with some pretty cool paper animation!  (Strong language)
 
video frame showing a judge and jury with a red arrow to indicate that the image is a YouTube link

Events
 
VERMONT:
 
Wednesday, January 13 at 7pm:
Policing and Mental Health

 

The second in the League of Women Voters program series, “Policing and Mental Health” will address how police interact with people in a mental health crisis, from the perspective of law enforcement, victims, and legal advocacy. Discussion will include police training and other policing reform approaches that can help mitigate overreaction and unnecessary violence.


Moderated by League member Madeline Motta, panelists are:

Brian Peete, Chief of Police, Montpelier

A.J. Ruben, Supervising Attorney at Disability Rights Vermont

Karim Chapman, of Vermont Psychiatric Survivors


Register in advance for this Zoom program:

https://us02web.zoom.us/meeting/register/tZcpcO2qrTMvE9BSTp9l7TXtcb8pv7kRG89R

Note: If readers are interested in attending this event, they may find this recent article from vtdigger of interest: Tarnished badge: Dishonesty and ethical issues dog dozens of Vermont police officers.  It describes how the Vermont judicial system does not organize or maintain official letters from prosecutors documenting police misconduct, as well as some of the consequences that have resulted from that lack of process.
 

MadFreedom is a human and civil rights membership organization whose mission is to secure political power to end discrimination and oppression of people based on perceived mental state.
 
MadFreedom envisions a world where every person regardless of race, gender, sexuality, class, ableness and mental state has the freedom to live their life on their own terms without coercion and with equality under the law.
 

To get involved, send an email to info@MadFreedom.org, to receive updates and invitations to Zoom meetings.
 

This biweekly newsletter was curated and edited by Vicki Warfield in collaboration with MadFreedom founder Wilda L. White.
 
Let us know what you think by replying to this email. We also welcome submissions. Please send submissions to Vicki@madfreedom.org.

 

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