Summer, 2019 Counterpoint

Page 1

NEWS, COMMENTARY, AND ARTS BY PSYCHIATRIC SURVIVORS, MENTAL HEALTH PEERS, AND OUR FAMILIES

VOL. XXXIV NO. 1

FROM THE HILLS OF VERMONT

SINCE 1985

SUMMER 2019

Gun Debate Focuses on Suicide

MONTPELIER – The legislature passed a bill in May that requires a 24-hour waiting period for purchase of a handgun after a debate that included questions about whether there was a

Governor Phil Scott vetoed the bill in June, saying that the state should “prioritize strategies that address the underlying causes of violence and suicide” and asking the legislature to work All ages: Distribution of leading means of suicide with him “to strengthen our All ages: Distribution of leading means of suicide 2011-2015 mental health system.” (As of the All ages: Distribution of leading means of suicide 2011-2015 Counterpoint press date, he had 2011-2015 not indicated whether he would sign the bill into law; his veto 7.3% Firearmswas announced before the online 7.3% edition was revised and posted.) Firearms 7.3% Dr. Rebecca Bell, a pediatric Suffocation Firearms 18.1% Suffocation critical care physician from the 18.1% University of Vermont Medical Poisoning Suffocation Poisoning Center, told legislators that data 18.1% Falls/Other show that in 2017, Vermont’s Poisoning 54.4% Falls/Other firearm suicide rate was 1.5 times 54.4% Falls/Other higher than the national firearm 20.1% 54.4% suicide rate and nearly three 20.1% times higher than that of other 20.1% Northeastern states. Vermont Department of Health “Since 2000, nearly 1,000 Vermont residents have died by ar olds: 59% firearms deaths; 20 – 24 year olds: 50% firearms deaths to suicide, as well the year degreeolds: to which suicide, including more than 100 people s: 59% right firearms deaths; 20as– 24 50% gun firearms deaths suicide is preventable. under age 25,” she said. Bell also cited data that ds: 59% firearms deaths; 20 – 24 year olds: 50% firearms deaths The suicide death of a 23-year-old Essex man showed that suicide attempts using a gun were in December created momentum for the new law overwhelmingly more likely to result in death after his parents asked in his obituary that readers than other means. write to their legislators with the message, “In “The ‘inevitability myth’ that says a person honor of Andrew R. Black, we ask that you work with suicidal ideations will just find a way is for legislation that imposes a reasonable waiting particularly damaging,” Bell testified to the period between firearm purchase and possession Senate Judiciary Committee. “Ninety percent of to provide a cooling off period to guard against those who survive near-lethal suicide attempts impulsive acts of violence.” do not go on later to die by suicide.”

Sen. Joe Benning was quoted in news reports as saying that the Essex death was tragic but he was not convinced that a waiting period would have saved Black. He and others raised concerns about whether the constitutional protections of the right to selfdefense outweighed other considerations. During the Senate committee debate, several senators questioned “whether it’s the responsibility of state government to intervene if a person decides to end their own life,” according to a report in Seven Days. “I know this may sound, at first blush, as if it’s coming out of left field, but the fundamental right of an individual to control their bodies and make decisions about their bodies is something I’m very attuned to,” Benning was quoted as saying. “And as crazy as this may sound, if I decide to commit suicide, what right does the state of Vermont have to try to intercede because somebody around this table feels, ‘Well, that’s tragic’?” Benning also pointed out that it’s unknown how many suicides-by-firearm in Vermont took place within 24 hours of the gun’s purchase, the report said. “We have a speculative bill that might reduce suicides, and that’s the hope,” Benning said. Similar concerns were raised in discussion in the House. Rep. Patrick Brennan, a gun rights advocate, said he might have been inclined to vote for a bill that could save lives but hadn’t seen any evidence (Continued on page 5)

Budget Inches Up

MONTPELIER – The legislature approved a budget this year that increased mental health funding in two areas: additional funding for community mental health agencies and the cost of opening a new 12-bed Level 1 unit at the Brattleboro Retreat. Legislators reversed a decision by the administration to cut off support for the training and support of Wellness Recovery Action Plans, a peer-led program, and criticized the governor’s budget for failing to meet its own stated policy goals to increase communitybased supports. There were no new peer programs funded. The increases to agencies included funds to create special support for up to 12 individuals with “complex needs” to help them succeed in the community after hospitalization. Legislators approved a $1.5 million increase for those supports, almost triple the governor’s proposed increase of $535,000 for six new community program beds. Two other items were not in the (Continued on page 4)

FDA Orders Labeing For ECT Use

10 The Arts12

by Neil Muse, Burlington

Social Inequity

17


2 Peer Leadership and Advocacy Meeting Dates and Membership Information for Boards, Committees and Conferences Peer Organizations

State Committees

VERMONT PSYCHIATRIC SURVIVORS BOARD

A membership organization providing peer support, outreach, advocacy and education. Must be able to attend meetings monthly. Experience with boards preferred, but not necessary. For information call 802-775-6834 or email info@vermontpsychiatricsurvivors.org.

COUNTERPOINT EDITORIAL BOARD

The advisory board for the Vermont Psychiatric Survivors newspaper. Assists with policy and editing. Contact counterpoint@vermontpsychiatricsurvivors.org.

ALYSSUM Peer crisis respite. To serve on board, contact Gloria at 802-767-6000 or info@alyssum.org. DISABILITY RIGHTS VERMONT PAIMI COUNCIL

Protection and advocacy for individuals with mental illness. Call 1-800-834-7890 x 101.

Hospital Advisory Advisory Steering Committee, Berlin, check DMH website for dates at mentalhealth.vermont.com.

BRATTLEBORO RETREAT

Consumer Advisory Council, fourth Tuesdays, 12 - 1:30 p.m., contact Gwynn Yandow, Director of Patient Advocacy and Consumer Affairs at 802-258-6118 for meeting location.

RUTLAND REGIONAL MEDICAL CENTER

Community Advisory Committee, fourth Mondays, noon, conference room A.

UNIVERSITY OF VERMONT MEDICAL CENTER

Program Quality Committee, third Tuesdays, 9-10 a.m., McClure bldg, Rm 601A.

Facebook and Web Sites www.vcil.org/services/wellness-workforce-coalition Trainings, events and meetings of the Wellness Workforce Coalition.

MAD IN VERMONT www.facebook.com/groups/madinvermont Venue for peer support, news, and advocacy/activism organizing in Vermont. “Psychiatric survivors, ex-patients/inmates, consumers, human rights activists and non-pathologizing allies are welcome.”

Conferences ALTERNATIVES 2019

The National Coalition for Mental Health Recovery (NCMHR), which will host Alternatives 2019 on July 7-11 at The Catholic University in Washington, DC. Alternatives 2019 will feature a two-day pre-conference, including advocacy training and a “Hill Day,” when peer advocates will meet, by appointment, with the staff of their U.S. senators and congressional representatives. The theme is “Standing Together, Celebrating Our Gifts, Raising Our Voices.” More information at: www.alternatives-conference.org/

Advises the Commissioner of Mental Health on the adult mental health system. The committee is the official body for review of and recommendations for redesignation of community mental health programs (designated agencies) and monitors other aspects of the system. Members are persons with lived mental health experience, family members, and professionals. Meets monthly on 2nd Monday at the Department of Mental Health, 280 State Drive NOB 2 North, Waterbury, noon-3 p.m. For further information, contact Marla Simpson, (marla.simpson@ymail.com) or Daniel Towle (dantowle@comcast.net).

LOCAL PROGRAM STANDING COMMITTEES

Advisory groups required for every community mental health center. Contact your local agency for information about meetings and membership.

Advocacy Organizations

VERMONT PSYCHIATRIC CARE HOSPITAL

WELLNESS WORKFORCE COALITION

ADULT PROGRAM STANDING COMMITTEE

DISABILITY RIGHTS VERMONT

Advocacy in dealing with abuse, neglect or other rights violations by a hospital, care home or community mental health agency. 141 Main St, Suite 7, Montpelier VT 05602; 800-834-7890.

MENTAL HEALTH LAW PROJECT

Representation for rights when facing commitment to a psychiatric hospital. 802-241-3222.

VERMONT CENTER FOR INDEPENDENT LIVING

Peer services and advocacy for persons with disabilities. 800-639-1522.

ADULT PROTECTIVE SERVICES

Reporting of abuse, neglect or exploitation of vulnerable adults, 800-564-1612; also to report violations at hospitals/nursing homes.

HEALTH CARE ADVOCATE

To report problems with any health insurance or Medicaid/ Medicare issues in Vermont. 800-917-7787 or 802-241-1102.

Correction

Reprinted from Winter, 2018

The Weight of a Rock The child with pigtails in her hair, Dimples on both cheeks, She ran, she jumped, she laughed, With playful childhood shrieks.

She could not see their beauty, “For they were only done by me!” Alone, the rock she carried, And hoped no one could see. Then one day looking at the rock, She saw that it was cracked, It was never magic, yet it held, The life that she had lacked.

She filled her days with baby dolls, Made circles on the ground, Played marbles and jumped hopscotch squares Invisible years had passed her by, She was a little clown. Now she feared it was too late, This rock she had to bury, Too young right now for worries, She could no longer bear the weight. Her innocence was flaunting, ‘Till one day the child was given, Standing on the water’s edge, A rock to carry, not of her wanting. She threw with all her might, “This rock, it is so ugly! In my pocket it shall hide, But it really is quite heavy!” In silence the child cried. It seemed to be an enchanted rock, For blank pages her life it drew, Still everyday she carried it, And the little child grew. She wrote poems that were unfinished, Her self they might betray, Beautiful drawings and painted pictures, She carefully tucked away.

For a moment others saw her rock, ‘Till it sank out of sight. Alone she stood there crying, It was not the rock that she bereaved, But for the death of a little child, That no one else had grieved.

The Service Building, 128 Merchants Row Suite 606, Rutland, VT 05701 Phone: (802) 775-6834 email: counterpoint@ vermontpsychiatricsurvivors.org MISSION STATEMENT:

Counterpoint is a voice for news and the arts by psychiatric survivors, ex-patients, and consumers of mental health services, and our families and friends. Copyright 2019, All Rights Reserved FOUNDING EDITOR Robert Crosby Loomis (1943-1994) EDITORIAL BOARD Joanne Desany, Emma Harrigan, Calvin Moen, Sara Neller, Eleanor Newton, Sarah Simoneaux The Editorial Board reviews editorial policy and all materials in each issue of Counterpoint. Review does not necessarily imply support or agreement with any positions or opinions. PUBLISHER Vermont Psychiatric Survivors, Inc. The publisher has supervisory authority over all aspects of Counterpoint editing and publishing. EDITOR Anne B. Donahue News articles without a byline written by the editor. Opinions expressed by columnists and writers reflect the opinion of their authors and should not be taken as the position of Counterpoint.

Counterpoint is funded by the freedom-loving people of Vermont through their Department of Mental Health. Financial support does not imply support, agreement or endorsement of any of the positions or opinions in this newspaper; DMH does not interfere with editorial content.

Counterpoint is published by Vermont Psychiatric Survivors three times a year, distributed free of charge throughout Vermont, and also available by mail subscription. Vermont Psychiatric Survivors is an independent, statewide mutual support and civil rights advocacy organization run by and for psychiatric survivors. The mission of Vermont Psychiatric Survivors is to provide advocacy and mutual support that seeks to end psychiatric coercion, oppression and discrimination. Counterpoint does not use pseudonyms in its reporting without stating that a pseudonym is being used and without an explanation for why the person’s identity is not being disclosed. Counterpoint does not use anonymous sources under any circumstances.

Have News To Share? Send it to Counterpoint! The Service Building, 128 Merchants Row Suite 606, Rutland, VT 05701 Email: counterpoint@ vermontpsychiatricsurvivors.org

How to Reach The Department of Mental Health:

802-241-0090

The rock had left a mighty dent, An empty void she had to face, As an adult, those childhood years, That she could not replace.

by Judy Sayers Barre

mentalhealth.vermont.gov

For DMH meetings go to web site and choose “more” at the bottom of the “Upcoming Events” column. 280 State Drive NOB 2 North, Waterbury, VT 05671-2010

Don’t Miss Out on a Counterpoint! Mail delivery straight to your home. c Enclosed is $10 for 3 issues (1 year). c I can’t afford it right now, but please sign me up (VT only). c Please use this extra donation to help in your work. (Our thanks!) Checks or money orders should be made payable to “Vermont Psychiatric Survivors.” Send to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701

Access Counterpoint online at www.vermontpsychiatricsurvivors.org

_______________________________________________ NAME: _______________________________________________ ADDRESS: _______________________________________________ CITY • STATE • ZIP


NEWS .

SUMMER 2019

3

ROUNDUP In Commentary

In the Legislature Guns and Suicide

A contested bill in the legislature this year focused on whether a 24-hour waiting period for handgun purchases would provide a coolingoff period and prevent impulsive acts of suicide. Opponents said there was no data to show it would make a difference; supporters pointed to the lethality of a suicide attempt using a gun in contrast to other means. The bill passed. See page 1.

Mental Health Funding

state-run locked program is expected to increase in size from seven to 16 beds, but planning could take four or more years. In the interim, the state will also review the possibility of a temporary facility on the grounds of Rutland Regional Medical Center. See page 5.

Emergency Room Security A proposal to eliminate state funds for hospitals to hire sheriffs to monitor psych patients being held involuntarily was reversed by the legislature. Instead, grants will be made available for a year to help smaller hospitals transition to providing the coverage on their own. See page 4.

Hospital beds and community supports got some additional funds in this year’s state budget, but no new peer programs received money. The legislature reversed a proposed cut in the governor’s budget that would have eliminated Psych Hospital Oversight The state’s two freestanding psychiatric training for Wellness Recovery Action Plans. See hospitals – Brattleboro Retreat and the Vermont page 1. Psychiatric Care Hospital – will be included in Secure Facility Land the data that the Green Mountain Care Board The Middlesex secure residence is a step closer reviews about the state’s system of hospital to being replaced after funds were approved for care under new legislation this year. They were purchase of land and design plans. The new exempt in the past. See page 4.

In the News FDA Requires ECT Labeling

The Food and Drug Administration has approved the use of electroconvulsive therapy devices for some diagnoses but has placed them under special labeling requirements, including a list of notices to patients. The Department of Mental Health said its oversight of ECT in Vermont will add a review of the new FDA requirements. See page 10.

Cultural Oppression

A daylong conference on cultural competency this spring focused on diversity and inclusion, with a number of workshops digging into the challenges of white supremacy. Participants shared their personal experiences of exploring and attempting to reconcile with the privilege they identified in their life based on their position or status, whether that be of a white person, middle class, educated or other specific status. See page 8.

UVM Eyes 40-Bed Plan

The University of Vermont Health Network is continuing plans for a new inpatient unit at its Central Vermont Medical Center campus in

Locked Bathrooms Panned

Readers spoke overwhelmingly in opposition to locking bathrooms on inpatient psychiatric units in last issue’s Counterpoint poll. The new question for the summer issue asks, “Will a 24hour waiting period to buy a handgun reduce suicide deaths?” See page 9.

Not Being Heard

Counterpoint’s editorial questions the state’s commitment to psychiatric survivors when it presents a budget that includes minimal new funding for supports that can keep people out of the hospital. See page 16.

Social Inequity

The oppression that results from social inequities affects those with disabilities as well as other marginalized groups, Sarah Launderville told the legislature. See page 17.

Jonathan Jerome

A tribute to this longtime member includes the reprinting of his reflection on Intentional Peer Support on pages 18-19.

Peer Funding

Berlin. It is projected to combine 25 new beds with the current 15-bed capacity. Work groups have begun operations planning for three levels of care. See page 6.

New DMH Commissioner

Vicki Warfield testified to the legislature on the importance of peer supports. See page 20.

Rethinking Bipolar, Part II

Sarah Knutson shares tips for turning off “survival mode” in part two of her commentary. See page 21.

Sarah Squirrell began in January as the newest commissioner of the Department of So Many Stories Calvin Moen and Kaz DeWolfe share an Mental Health. She brings a career background in community mental health and says that interview-style dialogue on the opposing stories she enjoys taking on complex challenges. See that make up the recovery narrative. See pages 22-23. interview, page 6.

VPS Introduces Director

In the Arts

Vermont Psychiatric Survivors introduced a new executive director in December. Christophre Woods told Counterpoint he sees his job as Louise Wahl Winners Winners in poetry and prose categories of the forging connections, charting direction and tapping into the organization’s membership. annual Louise Wahl Memorial Writing Contest can be found on pages 14 and 15. See interview, page 7.

VCIL 40th Anniversary

Antidote to Suicide

The Vermont Center for Independent Artist Tahnee Rifaly shares artwork and Living, a cross-disability advocacy and support reflections on the ways in which connection is organization, celebrated its 40th anniversary the best antidote to the feelings of abandonment this year. See page 6. that lead to suicide. See page 12.

Vermont Psychiatric Survivors Recruits for Board RUTLAND -- Vermont Psychiatric Survivors is looking for new members for its board of directors. Applicants must be people who are committed to the mission of VPS. The job of the board is to oversee the finances of VPS, to develop policies for the organization, to participate in fundraising, to provide support to the executive director, Christophre Woods, and to uphold the mission of VPS. The Board meets once a month, currently the third Monday morning, at the VPS office. “We would especially welcome people who have experience with finances, fundraising and public relations, but other interested people

are also welcome to apply,” said Martha Roberts, the current board president. “We try to have some geographic diversity – current board members are from Montpelier, Burlington and Sunderland,” she commented. The process of applying is to attend two board meetings to see if the board is a good fit for that person and for the board. Then the person meets with the executive director and/or a board member for further conversation. Interested people can call the VPS office at 802-775-6834 or write to info@ vermontpsychiatricsurvivors.org to ask for more information.


4 NEWS

SUMMER 2019

BUDGET ADDS TO HOSPITAL, COMMUNITY • Continued from page 1 governor’s proposed budget at all. The legislature included $5.2 million to the base budget for the agencies, an increase of about 1%, and $1.5 million towards development of their electronic health record systems. The base rate funds were allocated for both the mental health and developmental disabilities programs run by those agencies. The funding for the Retreat’s unit, $1.1 million for 2 1/2 months of operation, assumes the new beds will not open until midRep. Mary Hooper April of 2020. The House Appropriations legislature signaled that it was concerned about the money that will be required to maintain the additional Retreat inpatient beds, asking for a report estimating “the additional needs for state funds and sources” that the administration is considering for next year’s budget. The $60,000 in WRAP support funding is a grant to the Copeland Center to train and support people who provide direct WRAP education to help their peers write their own plans for staying well. Consumer and survivor advocates lobbied the legislature to restore the funding in testimony before both the House and Senate. Although the budget only extends the funds for one year, Department of Mental Health Commissioner Sarah Squirrell said that

given the legislature’s action, next year’s budget from the administration will likely restore the funding. The budget also directed the Agency of Human Services to develop a strategy to ensure that federal money for housing vouchers was being fully used. Housing advocates have expressed concern for years that available federal money was not being accessed. Additional language in the budget addressed money made available last year to fund a three-year program to bring more people into the workforce for providing mental health and substance use disorder services at community agencies. It provided more detail on the requirements for tuition grants and loan repayment opportunities. A statement by the House Health Care Committee was critical of this year’s budget proposals from the administration, quoting a report by DMH in January that said, “The absence or limitations of a local community to respond to individual needs when inpatient care isn’t necessary compounds the difficulty in transfer from hospitals to more appropriate resources or levels of care. … Despite the existing services array that has been enhanced since 2012, there is a continuing need and opportunity to provide increased community capacity to offset unnecessary ER wait times or inpatient admissions.” The governor’s budget “does not reflect these policy goals,” the committee said, advising the legislature’s own budget committee to consider Vermont’s unmet community mental health needs as “the number one priority FY20 health care issue,” terming it an “essential part of

implementing mental health parity within the Vermont health care system.” Specific sections in the final budget included: “Supported Housing: [The funds] shall be utilized to create up to 12 supported housing arrangements for Community Rehabilitation and Treatment (CRT) individuals whose acuity and particular needs have been prohibitive to community reentry. The intent of this funding is reduced inpatient use by individuals who have limited discharge options.” “Specialized Housing Vouchers: [AHS shall] develop a strategy to fully utilize available federal rental assistance funds for vulnerable populations in Vermont. This rental assistance, in the form of specialized and rapid rehousing vouchers, serves specialized, vulnerable populations, including homeless families with children, homeless youths, chronically homeless individuals with mental illness, and families that have lost or are at risk of losing a child to state custody.” “Staff Recruitment: [Funding] to be used for loan repayment and tuition assistance to promote the recruitment and retention of highquality providers of mental health and substance use disorder treatment services ... The funds shall be made available to individuals employed by a designated or specialized service agency ... based on a three-year contractual obligation to provide mental health services or substance use disorder treatment services, or both, at a designated or specialized service agency.” Uses include loan repayment or tuition assistance for master’s-degree level clinicians, bachelor’s-level direct-service staff, and nurses.

Hospital Security Funds Restored MONTPELIER – After starting with a proposal to eliminate state funding for security in emergency rooms, the Department of Mental Health reached agreement that it had some obligations to assist when a person is being held against their will under state law. The final state budget for next year will include $375,000 for one-time grants to assist smaller hospitals in the state “to build capacity to provide supervision in their emergency departments for people under the care and custody of the Commissioner of Mental Health to ensure the safety of patients and hospital staff.” The legislature had directed in February that DMH convene a work group to discuss options and report recommendations. The group included a representative from Vermont Psychiatric Survivors. That group concluded that “hospitals should have supervisory capacity in emergency departments and that they are required to provide this capacity” and that “the state has some responsibility to help support hospitals in building this capacity.” State funding for security began after the

Vermont State Hospital in Waterbury closed in 2011 after severe flooding from Tropical Storm Irene. That marked the beginning of increasingly long waits in ERs for an inpatient bed somewhere in the state. Even after replacement beds were added in Brattleboro and Rutland, and with the opening of the Vermont Psychiatric Care Hospital in Berlin, delays of days – and sometimes weeks – have continued. Over the past year, an increasing number of hospitals were cited for serious violations of patient rights for using law enforcement to restrain psychiatric patients. Federal regulations require that “hands on” contact with patients be performed only by staff who are under the direct supervision of the hospital, unless a person is in police custody. DMH told the legislature in January that funding for sheriff supervision had to be terminated because their use violated those rules. DMH Commissioner Sarah Squirrell acknowledged later that this was not fully accurate and said it was “lost in translation”

that the rules were not actually a “ban on using sheriffs.” The working group report noted that, according to the rule, when patient care services are provided under an outside contract, it must be with staff the hospital trains “who are under the supervision of the medical professionals of the hospital.” As a result, hospitals will likely be able to use the grant funding to hire sheriffs from a specialty program developed in Lamoille County, Squirrell said. “They are such leaders” in using least restrictive and least traumatic means of helping to keep patients safe when a crisis arises, she said, and currently provide about 70% of ER supervision. Although statewide data is not kept on ER interventions, data on sheriff transportation services show that the Lamoille County sheriffs rarely use restraints. The budget passed by the legislature states that DMH will be responsible to “monitor grantees use of these funds to ensure utilization follows best practices related to patient safety and supervision.”

Psych Hospitals Placed Under Care Board Review MONTPELIER – The Brattleboro Retreat and the state-run Vermont Psychiatric Care Hospital will be included under the health system oversight role of the Green Mountain Care Board after new legislation that passed this spring. General hospitals throughout the state are regulated by the board, which has the authority to review their budgets and set caps on patient revenues. The law excludes psychiatric hospitals.

Under the new law, the board may review data from the two psychiatric hospitals about their services, volume, utilization, discharges, payer mix, quality, coordination with other aspects of the health care system, and financial condition. The board was also directed to “consider ways in which psychiatric hospitals can be integrated into systemwide payment and delivery system reform.” The new oversight does not include budget review. Both hospitals said they supported

the change. Sarah Squirrell, commissioner of the Department of Mental Health, said that it “makes sense from my perspective and will help inform the GMCB more broadly on our mental health system of care.” The law that establishes the bill of rights for hospital patients was also revised to include psychiatric hospitals. Leaders at both said they had believed they were included in that law, and already posted the list of patient rights.


NEWS .

SUMMER 2019

5

GUN DEBATE FOCUSES ON SUICIDE • Continued from page 1 that a firearm waiting period would. “I think it’s based on emotion,” he said. “It’s another little chip in gun rights.” The House Judiciary Committee member who presented the bill, Rep. Martin LaLonde, said Vermont’s entire medical community, apart from some individual physicians, believed that there was evidence that waiting periods save lives. He said that lack of data was based on efforts by the National Rep. Martin LaLonde Rifle Association to block gun violence research, but that logic pointed to a positive impact by causing a delay because suicide was often a very impulsive act. The President of the Vermont Federation of Sportsman’s Clubs said in testimony that the group saw “a problem in attempting to achieve a balance between an individual’s constitutional

right of self-defense versus the establishment of a waiting period that might delay a person from committing suicide.” “Even if there is only one victim that wishes to purchase the means to defend themselves: Is it reasonable, fair and constitutional to subject that victim to any waiting period, when any delay might well make the difference between saving their own life or preventing injury? “How do we balance the rights of a person who wishes to preserve their life versus a person who is intent on ending theirs?” he asked. Others suggested that mental health intervention would be a better approach for suicide prevention, citing data that risk factors for suicide include depression and other mental health diagnoses or a substance-abuse disorder, often in combination with a mental disorder. “More than 90% of people who die by suicide have these risk factors,” said William Moore of the Vermont Traditions Coalition, another gun rights group. A witness for Gun Sense Vermont, a lobbying group for gun restrictions, testified that waiting

periods help reduce the occurrence of suicides as well as other impulsive acts of violence. Clai Lasher-Sommers said that when compared to other means of attempting suicide, guns are by far the most lethal. “The vast majority of people who attempt suicide survive – unless they use a gun,” she said. Bell said less than 5% of non-firearm suicide attempts result in death, whereas approximately 85% of gun suicide attempts end in death. “Waiting periods may help prevent firearm suicides by delaying access to firearms,” LasherSommers told the legislature. “In delaying immediate access to a firearm, waiting periods insert a buffer between impulse and action and are essential in providing that time. Time for someone to rethink what they are about to do. Time for them to reach out to someone and get help.”

News from The Vermont State House

The current locked residential program is housed in two trailers in Middlesex.

Funds Approved for Land for Secure Facility MONTPELIER – The legislature has appropriated $4.5 million over two years for land purchase and planning for a new, 16-bed facility to replace the seven-bed locked residence currently in two trailers in Middlesex. At the same time, it directed the Department of Mental Health to do an overall needs assessment for all levels of residential care in the state, and required that the evaluation include consultation with “past or present program participants or individuals in need of residential programs, or both.” The secure residential program was a part of replacement plans for the Vermont State Hospital for individuals who were believed to no longer need state hospital inpatient care but still required a locked setting for post-hospital involuntary treatment. After the 2011 flood that closed VSH, the program was developed in two temporary trailers in Middlesex. They were supposed to be replaced within three years. Legislators who toured the Middlesex facility this spring said they felt the poor conditions created by the temporary structure must be

urgently addressed. During one visit, an emergency exit door could not be forced open. DMH administrators said that settling of the foundation was warping the structure. The state agency in charge of construction told legislators it could take four to six years to find land, design the facility, and built it – even though the replacement planning began several years ago. Because of that timeline, the legislature directed the Agency of Human Services to explore interim options, including a proposal by Rutland Regional Medical Center and Rutland Mental Health to build and run an eight-bed secure residence on the hospital grounds. Hospital administrators testified that it could be built within two years. As a part of the legislation, the legislature directed AHS to change regulations for secure residential programs so that emergency involuntary procedures – restraint, seclusion and involuntary medication – could be used. The legislation requires that the rules be “identical to the rules adopted by the Department

of Mental Health governing the use of emergency involuntary procedures in psychiatric inpatient units.” DMH Commissioner Sarah Squirrel said she was pleased that legislators will be looking at different levels of residential care as part of a future decision-making process, particularly since some were suggesting that more than 16 locked beds were needed. The question, “Do we need a higher percentage of secure beds?” should be assessed before drawing such a conclusion, she said. The legislative language said that DMH “shall evaluate and determine the mental health bed needs for residential programs across the state by geographic area and provider type, including long-term residences (group homes), intensive residential recovery facilities, and secure residential recovery facilities. “This evaluation shall include a review of needs in rural locations, current and historic occupancy rates, an analysis of admission and referral data, and an assessment of barriers to access for individuals requiring residential services.”

New ECT Program Suspended at Springfield Hospital WATERBURY – Springfield Hospital’s electroconvulsive therapy program, which started less than a year ago amid controversy over its proposed practice and informed consent standards, has been ordered suspended for new patients by the Department of Mental Health. According to DMH Commissioner Sarah Squirrell, the directive came as a result of her

overall concern in regard to some of their clinical practices. In addition, there was concern because of the hospital’s financial status, she said. The hospital is close to bankruptcy and has had to cut staff and programs, published reports have indicated. Patients already receiving maintenance ECT

there will be able to continue, Squirrell said. The fall 2018 Counterpoint reported that the department had approved the start of ECT at Springfield Hospital with procedures and informed consent information that was not in compliance with DMH’s own standards. After inquiries by Counterpoint, the materials were revised.


NEWS 6 NEWS

SUMMER 2019

Commissioner Takes On Challenges By DONNA OLSEN Counterpoint

WATERBURY – The Department of Mental Health’s newest commissioner, Sarah Squirrell, has spent most of her career in human services and most of that in community mental health. She began in January as the second commissioner under Governor Phil Scott since 2017 and the seventh commissioner in the past 10 years. The new commissioner said she has a family member experiencing a serious mental illness, which adds a personal dimension to the work. “I have always been drawn to serving the greater and grappling with complex challenges and trying to find a solution,” said Squirrell. “To me it is a very personal motivation to support Vermonters and their mental health system of care for Vermont.” Squirrell said she has seen the successes when people work together as community and state partners. She said she sees the big challenge as the overall capacity of the state’s mental health system and acknowledges the crisis related to long wait times in the emergency room. She told Counterpoint, “We don’t seem to have flow in this system.” She described “flow” as the ability to manage care “with minimal delays in stages of care.” Squirrell stated that the solutions to the flow problem are multi-faceted. She said they will require both “attention to our inpatient capacity” and “step-down programs so they don’t have to go to the emergency room.” Twelve Level 1 beds at the Brattleboro Retreat are expected to ease the inpatient problem, she said. “We want to ensure people who are experiencing a psychiatric crisis can access that bed and not have to wait for an unreasonable

amount of time to access that bed,” said Squirrell. Squirrell said that needs always outpace resources. “As a whole system, we need to be very strategic in prioritizing and assessing what the needs are across our system of care,” said Squirrell. The mental health system of care demonstrates that commitment, she said. There is a bill in the legislature for 16 locked residential recovery beds to replace the Middlesex secure residence. The Department of Mental Health will also be looking at overall residential care needs this summer, she said. Squirrell said her responsibility is to ensure the department is prioritizing strategically and to determine “where programming needs to be expanded or built upon to meet people’s needs.” The department will also look at the overall capacity for children in Vermont’s mental health system, ensuring they have the right levels of care. “We have a key opportunity to go upstream and intervene earlier because we know the impact of trauma and adverse child experience,” Squirrell said. “The earlier we intervene, the better the outcome.” The mental health workforce is another challenge that Squirrell said she will be working on. “It is going to require a collective strategic answer that will be a mix of policy actions and proactive actions so we can ensure we have the right people in the positions to support our mental health system. Our system runs on people power.” Squirrell told Counterpoint that the workforce issues are affecting multiple sectors. At the hospital level, nurses need to be hired and retrained. “It is being able to hire good folks to do our services all the way down to the lack of psychiatrists both in children and adults,” said Squirel.

Sarah Squirrell Squirrell said she is driven to help others. “I think having a family member experiencing mental illness motivates me to want to support and serve the people who are experiencing the same kind of challenges,” said Squirel. For the previous three years, Squirrell, who has a Master of Science in counseling psychology, was the executive director of Building Bright Futures, where she advised the governor on systems, policies and practice improvements for young children. Earlier, Squirrell was the founding executive director of Vermont Cooperative for Practice Improvement and Innovation, a membership organization of mental health and substance abuse providers, state agencies, hospitals, professional associations, peers and families that work to support practice improvement and workforce development in the Vermont system of care.

VCIL Celebrates 40 Years of Advocacy MONTPELIER – The Vermont Center for Independent Living is celebrating its 40th anniversary in advocacy working to promote the dignity, independence and civil rights of Vermonters with disabilities. The organization, which is directed and staffed by individuals with disabilities, was incorporated as a nonprofit in 1979. VCIL Executive Director Sarah Launderville said, “Forty years ago today, VCIL became a reality! A small group of dedicated individuals with disabilities came together and drew from the philosophy of independent living, creating a space for Vermonters with disabilities to learn to advocate for themselves and live the lives they wanted to be living. “They rejected the medical model and put

together an organization that was the first in the state to be led by people with disabilities. Forty years later we continue that legacy of hope and independence!” To mark its anniversary, the organization had a social media blitz on Facebook where dozens of current and past staffers, board members and peers shared quotes about their connection to VCIL. Former VCIL Executive Director Deborah Lisi-Baker looked back on Feb. 13, 1979, as “the day a few visionary and rebellious activists incorporated an organization to change disability experience in Vermont.” “Many of the founders and those that followed began to go without sleep, write grants, crawl up stairs to visit peers, imagine accessible streets and buildings, write legislation, celebrate Deaf

culture and Deaf rights, help people out of nursing homes, challenge psychiatric assumptions and learn how true stories can change the world.” She added, “Thanks to all who started VCIL and to all who continue the revolution today.” On Feb. 14, a resolution congratulating VCIL was read on the floor of the Vermont House. The resolution notes in part that “VCIL is dedicated to the truism that people with disabilities are full and equal citizens of this State and this nation” and that “the four decades during which VCIL has promoted remarkable strides forward for Vermonters with disabilities are an accomplishment worthy of legislative commemoration.” VCIL will celebrate its anniversary throughout 2019.

Expansion Planning for 25 New Psych Bed Unit Continues MONTPELIER – The University of Vermont Health Network is targeting 40 beds for inclusion in a new inpatient unit at the Central Vermont Medical Center, including its existing 15-bed unit, a report to the Green Mountain Care Board said. The network’s report said that the plan is to submit the project for regulatory approval by the end of the year. The 25 new beds are fewer than the projected statewide need identified

by an analysis last year, but the CVMC campus cannot exceed that number without putting federal funding at risk, the report said. Three work teams met during April and May to provide input on planning. The teams included peer advocates, and one advocate was included in a subgroup that travelled to Pennsylvania and Minnesota to look at recent new hospital designs. One work group reviewed the design for a unit

for patients with the most severe symptoms, which is being termed “Tier 1.” A second group evaluated needs for units for “Tier 2” and “Tier 3” patients. The third group worked on planning for emergency department assessment and transition space, the report said. In the next phase, architects will work from input by the work team to begin preliminary designs, the UVMHN report said.


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New Director Shares His Passions By DONNA OLSEN Counterpoint RUTLAND – Christophre Woods, the new executive director of Vermont Psychiatric Survivors, says he came on board in December with a host of new ideas. He told Counterpoint he sees his job as encompassing forging connections, charting direction and tapping into the organization’s membership. “See what they want, and then do that,” said Woods. “I am many things. I am fierce, I can be understanding, I can be confrontational. I can be many things to many people, but the most thing I am to people is I am present. I am open, and I am compassionate. I am passionate about people’s voices being heard. “So I am just a guy from the South with an idea that people should be able to help themselves but you have to give them the tools to do that,” said Woods. Woods said he believes that not everything has to cost money. “Vermont has a corporate view of how the course should be run. They also have a medicalized view on how support can be done.” In contrast, Woods points to a buddy system he created in his last job for people who were newly diagnosed as HIV positive. “They didn’t want to go to support groups where everyone knew the cars and the people who went there, and it is very hard to tell the most intimate thing of your life to people you haven’t told. But it is easier to explain to one new person in [your] life,” said Woods. A buddy couldn’t give medical advice but could talk about their experience, Woods explained, and they can help each other struggle with disclosure and how that can happen. Woods would like to build a buddy system for peers with psychiatric labels across Vermont, especially in rural areas where there are no support groups. “Not everybody wants to go to a support group and talk about their feelings. Sometimes they would like to just go to a movie or eat pizza,” said Woods. “That social interaction is every bit as important as talking about your feelings. Talking about your stuff will come in that social interaction when they establish trust with those people.” Woods is adding a Meetup function on the VPS website. “Want to go hiking on Thursday? Just show up,” said Woods. Woods said he believes that people who live with a label of mental illness and understand triggers will not abandon another person for freaking out while hiking because it is part of their own life. “They are not going to turn into social pariahs. They are going to say, ‘OK, do you want us to wait for you here or at the top of the trail? It is up to you,’” said Woods. “When you are in the creation of those social interactions, you can find peer support.” Woods said there has been some backlash about his ideas and vision. “People have told me that by doing something like that with people creating natural peer supports that I am undermining and devaluing our peer work,” said Woods. Some staff at the Department of Mental Health “come from a medical background, and

they just don’t get that not everyone is about therapy. Not everything is about what people are getting.” Woods said that if he had an “undesignated funds” budget line, he could use the funds for people who are coming off the street, an outfit for a person who has a job interview, or help with transportation. “Not everyone is sitting around waiting to get a dollar. Some are waiting for an opportunity to Christophre Woods express themselves and do what they want to do,” said Woods. board of directors, “You need to get people on Woods said he sees opportunities for groups this board that look like me – not exactly like to come together and start social networks, and me – but just not like you.” he would like to go across the state and see these He said he wants the board to understand opportunities grow and see what they need. where he is coming from being a black man with “It is important that people have voices,” said a mental health issue. Woods. Woods told Counterpoint that it is a different “Rather than always trying to represent experience being a black man in the emergency people’s voices from whatever part of the state, room with a police officer who wants to shoot sometimes we go get them and we bring them you because you may be dangerous, assumed to here to have their own voice,” said Woods. be true because you are in there in a crisis. “Then we help them organize a protest of a Another concern Woods discussed is liberal local ordinance in their area, and we support racism in Vermont. them by printing materials and get them a venue “People don’t get it when you are part of the if one is needed,” said Woods. dominant culture and you are always the one Woods told Counterpoint that he is worried deciding what’s on the agenda for those of us about the federal budget cuts under President who are the recipients of your assistance. That’s Donald Trump. not okay,” said Woods. “If you piss off the wrong person there will be “I am not going to a meeting where a bunch of no money, so that is why I am also trying to go white people are trying to decide what is best for after grants that have nothing to do with DMH black people.” or the Vermont state government,” said Woods. Woods said he wanted to make clear that he Some of the groups he meets with have similar was available to help. missions that are mutually beneficial, and having “I am always open to other people’s voices and that networks helps him not use VPS funds, he opinions. An email, a comment on the Facebook said. page or a phone call is always welcome – more “So it saves us time and helps build our than that, an invitation to come and see you and message,” said Woods, “until we create an a group of people who are in your corner of the environment where having mental challenges state. is just a part of who we are. We are fighting an “It is extremely important to know the people uphill battle.” around the state so I can accurately represent At a meeting last month, Woods told the what they want,” said Woods.

Patient Representative Introduced RUTLAND – Vermont Psychiatric Survivors has introduced Isaac Lezcano as a new patient representative. In that role, Lezcano said he strives to build mutual and productive relationships with other consumers and to illuminate and explain alternative perspectives on treatment and social definitions of illness. If an action can be taken to make his immediate world a more just and sensible place for him or his peers, he said, he will attempt to take it. Lezcano has a Bachelor of Arts in Film Production from Keene State, and freelance and corporate experience in the world of cinematography and editing. He said he describes himself as a jack of all trades and endeavors to apply the “lateral thinking and people skills” he has honed in other jobs towards achieving empathetic discourses and gains in social justice.

Isaac Lezcano


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Overcoming Cultural Oppression By AMOS MEECHAM Counterpoint

BURLINGTON – Vermont Care Partners focused this year’s annual conference, titled “Stepping Forward Together 2019: Promoting Cultural Competence and Equity in Communities,” on diversity and inclusion, with a number of workshops digging into the challenges of white supremacy. The conference was held in March at the Davis Center at the University of Vermont. Panelists in the opening presentation, “Leading the Way: Practices and Policies Promoting Cultural Competence and Advancing Equity in Vermont,” spoke to the importance of people telling their stories as a way to better understand issues. Major Ingrid R. Jonas shared information on the process that the Vermont State Police has used to assess for bias in how VSP conducts traffic stops. Jonas is from the Support Services Division of the state police. Through review of data, they discovered that they had a higher rate of searches of people of color, she said, despite a lower rate of discovery of contraband through these searches. Jonas also spoke to gender imbalance in the police force and the importance of getting women into leadership and training roles to “break down those barriers.” Martha Maksym pressed for stakeholder involvement in decision making, asking, “Who is the community you are trying to serve, and do you have that community at the table?” She is the deputy secretary at the Vermont Agency of Human Services. Max Barrows, outreach director at Green Mountain Self-Advocates, stressed that its constituents are important contributors and advocated involvement from the entire community. At GMSA, “we promote assuming competence,” he said. The presenters at several workshops focused on white supremacy as a culture developed and maintained by white people to the benefit of white people. The term “white supremacy” typically evokes images of rallies with torches or controversial statues of Confederate generals, presenters noted, but white supremacy can also be defined in a way that potentially made conference goers, most of whom were white, feel complicit and uncomfortable. One of the presenters said, “When we are talking about white supremacy culture, we are all a part of that and we are all impacted by that.” Several people referred to it as “the dominant culture,” an overarching culture within which we all exist, a system built by white peoples and nations that oppresses peoples and nations of color. In the “Cultural Competence or Cultural Hu-

mility” workshop, the presenters defined competence as something that tends to come from clinical or formal training and leads to “detached mastery” as a final outcome deemed sufficient, for instance in training staff. Humility was defined as a lifelong commitment to self-evaluation and self-critique. Many people shared their personal experience of exploring and attempting to reconcile with the privilege they identified in their life based on their position or status, whether that be of a white person, middle class, educated or other specific status.

“When we are talking about white supremacy culture, we are all a part of that and we are all impacted by that.” Participants said it was important for people in positions of privilege to educate themselves on the issue of white supremacy and not to rely on oppressed people to educate them. One person objected to “how much the people who occupy dominancy expect to be educated, expect emotional labor from people who have been oppressed.” The context of the overall conversation was largely one of privilege based on race, but there was also discussion of other ways that people can be privileged or oppressed. Another major theme of discussion was how to respond or intervene with people who make comments or take actions that are determined to be racist or reinforcing of an oppressive culture. The workshop presenters shared examples of inclusive learning community practice, such as “listen harder when you disagree” and “welcome conflict and discomfort, as they are signs of individual and institutional growth.” Participants commented on how difficult it can be to engage in constructive conversations around issues of race and oppression, how easy it is to go to anger, accusations and name calling. One participant spoke about working on “how to call in instead of call out. I’m trying to find that balance.” An afternoon workshop, “Disentangling Wellness from Whiteness,” introduced background on white supremacy, including a definition of white supremacy taken from the Colours of Resistance Archive. The archive identifies itself as “a collection of analysis and tools for liberatory organizing and movement-building.” “White supremacy is really just a religion of power worship,” commented one workshop leader. “The relationships that white people

have learned how to have are oppressor and oppressed.” There were questions from workshop participants about variations within white culture, which led to a conversation about different ways in which people can be privileged or oppressed. Intersectionality was invoked within this context, including the possibility that people may be privileged in one area but oppressed in another. This also led to a conversation about white fragility. Workshop leaders held up a book entitled “White Fragility,” which is on the New York Times bestseller list. They defined white fragility as stress experienced by white people when considering issues of race, stress which often results in defensive reactions. Workshop participants were led through some personal reflection exercises in an effort to get in touch with their own biases. This included recognizing sensations they were having in their bodies if difficult feelings arose. They were encouraged to counteract white fragility by focusing on creating a “brave space” rather than a safe space. In “Introduction to Microaggressions,” workshop leaders explained that microaggressions exist only within a context of systemic oppression. One of the workshop leaders elaborated, if it were “a level playing field, we could say whatever we want and it would just be rude,” but given that there are systems of oppression, what might otherwise be seen as rude or offensive behavior is a microaggression within the context of the given system of oppression. A microaggression can be based on race, class, gender or any other number of oppressed identities. The two presenters shared their own personal experience of microaggressions, both as victim and perpetrator. Workshop participants said it was helpful to get examples of microaggressions, especially surprising ones. One such example was saying to someone from another country, “Your accent is so cute,” which presenters said singles out the individual from another country as a minority within the dominant culture. The presenters explained how repeated trauma in the form of microaggressions can lead to allopathic load, which they defined as accumulative physiological load (or stress) that happens over a lifetime of trauma. The Vermont Care Partners is a network of agencies that includes the Designated Agencies and several Specialized Service Agencies. The lunchtime presentation included recognition of the Counseling Service of Addison County, Northwest Counseling and Support Services, and Howard Center as Centers of Excellence.

Bill Passes To Combat Bias Against Ethnic and Social Groups MONTPELIER – A working group established to make recommendations for school standards that “recognize fully the history, contributions, and perspectives of ethnic groups and social groups” will include addressing bias based upon ableism. The definition of social groups in the legislation passed this spring includes “women and girls, people with disabilities, immigrants, refugees, and individuals who are lesbian, gay, bisexual,

transgender, queer, questioning, intersex, asexual, or nonbinary.” The bill stated in its findings that “the harassment of marginalized groups, and the lack of understanding of people in power about the magnitude of the systemic impacts of harassment and bias, damage the whole community.” The goals of the law include a review of school policies to assess whether they “ensure every student is in a safe, secure, and welcoming

learning and social environment in which bias, whether implicit or explicit, toward others based on their membership in ethnic or social groups is acknowledged and addressed appropriately” and whether they “challenge racist, sexist, or ableist bias, or bias based on gender or socioeconomic status.” The bill’s findings said that according to the Department of Justice report on hate crimes in Vermont in 2017, 9% were based on a motivation involving disability bias.


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Counterpoint Telephone Poll

QUESTION: Would a 24-hour waiting period to buy a handgun reduce suicide deaths? (See news article starting on page 1.)

VOTE by calling:

888-507-0721 (Toll-free call)

>> To vote “YES” Dial Extension 12 >> To Vote “NO” Dial Extension 13 Results of the poll will be published in the next issue of Counterpoint.

Locked Bathrooms Are Panned RUTLAND – Counterpoint readers called in with some strong reactions to the winter poll question that asked, “Should bathrooms be locked on a psych ward based on safety concerns?” Of the 12 who responded by phone message, only one supported locked bathrooms. On the Vermont Psychiatric Survivors Facebook page, there were 93 responses, with 88 “no” votes and five “yes” votes for a total of 94% responding “no.” The 105 total responses were a record high. The question was based upon a practice at the Brattleboro Retreat implemented a year ago. “Most people would not kennel up a dog without giving them access to an area to do their business,” one person wrote in a Facebook post. “I was hospitalized last year [at the Retreat] and I was terrified to go back there because they did that back then, and obviously it’s not been improved,” said a caller. “I just wanted to let you know you’re right, that’s not right, and I hope they further investigate this because it’s not OK. Patients shouldn’t feel they’re on lockdown; they should feel like they’re human beings.” Another who called in to vote “no” said, “Seems to me that having access to a toilet – bathroom – is a human right. “I think the people who cut off access

to bathrooms should do something else – 15-minute checks – or find something, some other way to make sure safety is available. But not locking people out of bathrooms.” Several expressed similar sentiments about addressing safety through design: “Bathrooms on psych units should be made safe, for safety concerns.” “Why lock a bathroom that should be as safe as a [patient’s] room?” another commented. A Facebook commenter added, appearing to intend to be facetious, “I feel the safest thing would be to lock people in padded cells, naked. We’re well on our way toward that goal.” One caller said they were getting taken off a medication that made it so “if I feel the urge, I have to go right away; it’ll be too late to go get a staff member and go back.” “It feels like it’s bothersome to the staff to have to ask them to open a bathroom every time I have to go in to change a tampon, to pee, check my hair,” another caller said. “It’s really frustrating.” The one person who responded with a “yes” by phone made it apparent that they had not experienced psychiatric hospitalization: “There’s a reason that people are in the psych ward, and that’s because they’re mentally unstable, and I think that says it all,” the caller said.

“It’s for their own safety and I think for other people’s safety.” The new question for the summer Counterpoint is: “Would a 24-hour waiting period to buy a handgun reduce suicide deaths?” (See news

article on page 1.)

The winter Counterpoint poll question was: Should bathrooms be locked on a psych ward based on safety concerns? 6% “Yes.” Bathrooms should be locked

94% “No.” Bathrooms should not be locked

FROM THE KEY UPDATE Reprinted from the Key Update. The Key Update is the free monthly e-newsletter of the National Mental Health Consumers’ Self-Help Clearinghouse, affiliated with the Temple University Collaborative on Community Inclusion, and includes items reported from around the world.

A Less Hostile World

In a recent piece in Radical Abolitionist, five authors who identify as “Mad, neurodivergent, and psychiatrically disabled people” (MNPD)

suggest 28 ways to make the world less hostile to them and others like them. The authors include Kaz DeWolfe, a Brattleboro resident. Among the suggestions: “Research the impact that coercive treatments and practices have had on MNPD individuals.” “Radically reconsider what constitutes expertise. If you believe that mental health professionals know more about a person’s experiences, wants, desires, and needs than

that person themselves, examine some of the prejudices and biases that may be underlying this belief.” “Advocate for policies that increase the resources and social safety nets for MNPD people.” The article is available at https:// www.radicalabolitionist.org/radicalabolitionist/2019/2/15/ 26-ways-to-make-theworld-less-hostile-to-mad-neurodivergentand-psychiatrically-disabled-people.


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FDA Orders Labeling for ECT Use Department of Mental Health To Review State Procedures

WATERBURY – New regulations on the existing mandatory DMH consent form The FDA does not bar a Class III use, stating electroconvulsive therapy from the Food and to ensure that all the elements of the rules are that “once a product is approved or cleared, a Drug Administration will result in updated included, she said. Squirrell said that DMH healthcare professional is able to prescribe oversight standards from the does not approve of the device based on a patient’s condition. ECT Department of Mental Health, is a prescription device and according to Commissioner FDA relies on licensed Sarah Squirrell. practitioners to direct its In December, the use.” FDA ended decades of The FDA said it “is unregulated use of ECT, not permitted to limit or which had been allowed interfere with the authority because the equipment of a healthcare professional predated the establishment to administer any legally The new FDA order re quires the following of the FDA. ECT equipment (A) Relevant contraindica marketed device to a patient patient labeling: tions, warnings, prec au tio (B ns ) ; A summation of the had never been required for any condition or disease clinical testing, which includes the clinical to demonstrate safety device, and a summar y within a legitimate clinicianoutcomes associate of adverse events an d wi th th e d us co e m of (C pl th ica ) Information on how th or effectiveness and was e patient relationship,” even if tions that occurred wi e device operates an th the device; d the typical course therefore designated as (D) The potential benefit it is being used for a different of treatment; s; (E ) Alternative treatmen “Class III,” which is the condition than what was ts; (F) The following stat highest risk classification. approved for marketing. ement, prominently pl ac ed : “W Di ar so ni The new regulations rientation, confusion, ng: ECT device use m The FDA said that, in ay be associated with and memor y problem : s”; establish the use of ECT (G) Absent performance response to a proposed order data demonstrating a be ne tre fic at ial ef fect of longer te for some diagnoses as ment in excess of 3 m in 2015, it received over 3,400 rm use, generally co onths, the following nsidered statement, prominen “Class II with special intended this device prov comments from industry, tly placed: “Warning ides shor t-term relie : W he n us f of ed sy as tre m pt at oms. The long-term sa ment has not been de controls.” According professional societies, trade monstrated”; and fety and ef fectiveness of ECT organizations and individual to the FDA order, this (H) The following statemen ts on known risks of ECT, absent perform designation means the risks do not apply: consumers. ance data demonstra ting that these FDA found that there is a (1) ECT treatment may be Responding to concerns associated with diso rie nt (a at nt io erograde) and long-te n, confusion and mem “reasonable assurance of raised in some comments, rm (autobiographica or y loss, including sh l) memor y loss followi or t-term the reclassification order said safety and effectiveness” of clinical evidence, these ng treatment. Based side ef fects tend to go on the majority away within a few da of a device as long as the treatment with ECT. Althou that “labeling will be required ys to a few months af gh the incidence of pe ter the last rmanent cognitive m additional requirements clinical literature, some pa to explain the potential risks emor y loss was not su tients have reported pp or te d a by pe au rm th to e an biographical memor are included. ent loss of memories and benefits to ensure that y); of personal life even ts (i.e., The special controls (2) Patients treated with EC patients, caregivers, and T may experience man ic im sy pu m lsivity, racing though ptoms (including euph for ECT include labeling family members understand ts, distractibility, gran oria and/or irritabilit diosity, increased ac y, “to explain the potential need for sleep) or a worsen the magnitudes of the risks tivity, talkativeness, ing of the psychiatric an d de cr ea sy se m (3 d pt ) Th om e physical risks of EC risks and benefits” and s they are being treat and the benefits of ECT. FDA T may include the follo ed for; and wing (in order of frequ to “specify the clinical (i) Pain/somatic discomfort acknowledges the important role ency of occurrence): (including headache , m (ii us ) Sk cle in burns; training that is needed soreness, and nausea of patient preference and patient ); by those using the ECT (iii) Physical trauma (includi choice in selecting treatments. ng fractures, contusio ns, injury from falls, (iv) Prolonged or delay device,” the FDA said. Patient preference is important dental and oral injury ed onset seizures; ); The redesignation (v) Pulmonar y complications in balancing the individuals’ (hypoxemia, hypovent ilation, aspiration, up to Class II is “for use (vi) Cardiovascular complica assessment of risk and benefit, per-airway obstructio tions (cardiac arrhyth n); mias, hear t at tack, hi in treating catatonia stroke); and especially in the presence of gh or low blood pres su re , an d (vi i) De ath. or a severe major serious and potentially lifedepressive episode threatening disorders.” associated with major depressive disorder The order said the FDA agreed or bipolar disorder in patients age 13 years ECT for those under age 18 and with comments that there is a need and older who are treatment-resistant or who would not change this standard without more for ongoing training for healthcare professionals require a rapid response due to the severity extensive review. who administer ECT. of their psychiatric or medical condition,” the The University of Vermont Medical Center “ECT is a complex procedure that requires order said. is the only hospital under state oversight that specialty training for reasonably safe and For some diagnoses, ECT will remain in the currently provides ECT on a regular basis effective administration. FDA is requiring Class III category because there is “insufficient in Vermont. The Veteran’s Administrative device labeling to specify the clinical training scientific evidence” to support reclassification, Hospital in White River Junction provides ECT that is needed by those using the ECT device to the FDA order said. Makers of ECT devices will but is under federal control. Central Vermont ensure appropriate use and appropriate ongoing be required to submit applications with evidence Medical Center has limited services, and a new medical management of the patient,” it said. that establish safety and effectiveness prior to ECT program at Springfield Hospital has been The order said that the risks regarding marketing ECT equipment for those uses. suspended for new patients. memory impairment were addressed in the Class III medical devices “present potential The chair of psychiatry at UVMMC, Robert special controls. unreasonable risk of illness or injury,” and the Pierattini, MD, said the hospital would not “The risk of cognitive and memory impairment designation “applies to ECT devices indicated change practice based on the new classifications can be mitigated by establishing the technical for schizophrenia, bipolar manic states, but rather “continue to offer ECT to patients parameters for the device along with nonschizoaffective disorder, schizophreniform based on the specifics of the individual clinical clinical testing data to confirm the electrical disorder” and use with patients under 13 years situation.” characteristics of the output waveform,” it said. of age. “The process of informed consent for ECT “This risk is further mitigated by providing Squirrell said that DMH will add some at UVMMC is very robust,” he said, and “the information to both the user and patient, in components to the biannual reviews of hospitals distinction between Class II and Class III the form of labeling, on the potential adverse that provide ECT to ensure that practitioners indications is much less pertinent” than the effects of the device, alternative treatments, and are “informed and educated” on the standards, specifics of patient needs and preferences. a prominent warning that ECT device use may “particularly around the special controls to The clinical procedures already in use at be associated with: disorientation, confusion, mitigate risk.” UVMMC “are fairly comprehensive and did not and memory problems and is limited in its longThe informed consent requirements set out require change” to meet the new FDA special term effectiveness (greater than three months).” by the FDA will be reviewed and compared to controls, he said.


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BRATTLEBORO Saturday

July 13 12:00 PM 4:00 PM

to

Meet at Pliny Park March to the Commons Rally and speeches FREE T-SHIRT FREE FOOD Vermont Mad Pride is a march and celebration organized by psychiatric survivors, mental health consumers, mad people, and those the world has deemed “mentally ill.� Mad Pride is about challenging discrimination, advocating for rights, affirming mad identities, remembering and participating in mad history, and having fun. Our lives and contributions are valuable and need celebration!


SUMMER 2019

The Arts

A Reflection

12

by Tahnee Rifaly

The True Antidote to Suicide:

Connection

by Tahnee Rifaiy

Suicide is the forgotten and overlooked lost member of the group. It goes to the side, as it’s in the way of daily grind progress for success. The cries for help, to be known in this life by others, become a disruption to society. Because it’s easier and more convenient to use medication for silencing a human’s need to be connected with real life. To medicate is to be invisible and tolerable because that voice is desperate. That is why people are taking their own life. Medication is not the answer because it deepens the un-loved feeling, and of being an inconvenience to the community. The answer is in true friendships that support compassionate, unconditional love without the use of medication. No one wants a pill to substitute for human kindness. There’s a noose around someone’s neck who feels suicidal, and it’s often called religion. When a person slips away, the pull toward the heavens seems stronger than earth. The world has become cruel and intolerant of differences. The mean spirit is everywhere in this cold-hearted, empty realm. That is where most people exist today. Buried alive by time and the almighty dollar, sacrificing their soul to survive. Living on quick-fix, simple, addictive habits that are promoted by society in order to keep going. But people are spiritually starved for a true connection and the ability to take some time out for a healthier life. The pace is too fast, and we’re being forced forward. Medication enables us to do more by stabilizing mentally, yet at the body’s expense. The body-mind spirit-soul connection is not working naturally in today’s busy path. It is not supposed to go on this way. I am sure of that. People are now standing up and speaking out to join hands. That is the only real thing we know as human beings.

by Tahnee Rifaly


The Arts . 13

SUMMER 2019

Butterfly A Flutter I’ll be glad when summer is here and we don’t have winter and summer at the same time keep going I don’t want you to see me in my underwear I’m going to sneeze

by Carmen Beauregard Underhill

Pieces of My Life Dreams, loves torn apart and shattered, I live my life in pieces of memories of another time. Pieces of my mind of things that make no sense of many different events that are all real but no longer fit together as a whole. Deprived of a life I could have had and should have had. I deserved better than that. My Dad stood by me through it all, protected me the best he could. Loved me no matter what I did and never judged me or looked down on me. He really loves me for me no matter how crazy I may be He never gave up on me.

by Tiffany Kangas Hartford

by Thomas G. Stetson Brattleboro

Share Your Art!

Express Yourself in Drawing, Prose and Poetry... Counterpoint Is About Peers Sharing with Peers

Email to counterpoint @vermontpsychiatricsurvivors.org or mail to Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 Please include name and town


14

The Arts

SUMMER 2019

Gratitude Psychosis is not what we talk in polite company.

One on one MY one on one

That ward is gone now torn to the ground.

And yet if not now when?

That means very little to others but to me that is the person

Memories hold

Gun metal gray, over top fire red, nails click on the keyboard.

who was there for me in the dark she was one I was one

the little wooden rooms the feeing of ski camp the overwhelming trap the suffocating inescapable

Bone Black a tone fit for depression and night

Never alone But one On One

walls, washed over by the incessant screams.

Pounding rain, against trees and grass, leaves hard hit in the five a.m. mist. Laid out flat on my table sketchbook Fit to illustrate a plunge into the dark. The little pages dance in the light sway between health and well being

That is what happens to high risk patients in the mental ward we receive without break one on one care until the psychosis breaks until maybe depression lifts until with hope catatonia stops setting in. One on one is a fond memory in a ward as terrifying as the flood that ripped thru our little State.

3

They see

For Gorilla was right the ward screams day and night. Anger is met with seclusion. Save that line for later She has yet to rip The air conditioning unit off the wall!

She shouted I stood muted by sheer terror Unable to grasp why in God’s name I was there. A week my fingers dried up my bones began to show thru the skin aged and thin lost of all water unaware of the flood about to hit.

by Caroline Tavelli-Abar Rochester

Her wails will never leave me. She howled She screamed

From a place of health memories rise they flood the soul in spurts fill my mind in lilts recall that night? Why would I Venture there? Often not as often as before folks still traumatized recall Irene She ripped thru the State flooding even the mental ward. News articles Recount The patients led to the higher floors They tell about the bravery of the staff and the calm of the patients They tell – My memories sharp cut thru the mist the fog

Fragmented Hearts

by J. Abbott


SUMMER 2019

1

Atomic Bomb

Humans can be like Atoms l When we’re centered and mindfu is like the nucleus in its place. When we’re active and healthy is like the electrons moving in their grace. When we’re angry, violent, and our minds and bodies

A Secret Life

Betrayal

Second Place - $50 A Secret Life Catherine Hill, South Burlington

2

Third Place - $25 Gratitude Caroline Tavelli-Abar, Rochester

Prose Winner

$100 Betrayal Samantha Cochran, Rutland

1

I was 15 when I got left behind. My mother packed her bags without me in mind. I have a father I have never been able to find. I learned quickly that the world was unkind, but God let me feel love of some kind. I became a mother with a family and a house to run. Enjoying summer days filled with fun, watching my children's golden skin glistening in the sun. It was there I had it all, but before I could catch it I watched it all fall. Am I caught up in the devil's call or is my life pre-written like God's law. I would pray every day giving God thanks in every way until that dreadful day when God took my family away. I was left speechless with nothing to say. I don't know why God's footprints are no longer next to mine in the sand. I miss having God's presence at hand. I am tired of being exiled and banned. But the thought of rewinding time sends chills up my spine to think of reliving the crime. I was so young when I was violated, so many people I hated. Doctors put me on pills they kept me sedated, but still I felt infiltrated. My youth was taken. I felt forsaken. So I told lies just to appear normal in others' eyes, meanwhile nobody heard my cries. My body turned curvy and voluptuous. I became promiscuous, trying to find life's bliss. Instead I became powerless, followed by hopelessness. It wasn't my fault I was abused, thrown out and used. My insides left bruised. All these years later I am still afraid, living in fear, wondering if again I will be betrayed.

by Samantha Cochran Rutland

Louise Wahl Memorial Writing Contest

First Place - $100 Atomic Bomb Carol Ruzicka, Rochester

Rochester

South Burlington

15

Poetry Winners

by Carol Ruzicka

by Catherine Hill

.

2019 Winners

are slit, is like the atom Split.

My name is anonymous – I hide in the shadows of the night, Pleading to be noticed – hungry for the light. My life has no secrets wearing this disguise, no one meets my sadness – no one hears my cries. I feel like the forsaken one living all alone, crawling to desolate corners fearing the unknown. There must be others like me afraid to show themselves – taking their true feelings stashing them on shelves. We are the chosen one running in life’s race – Wanting to be winners but settling for second place. Give us courage we pray, Our chance comes and goes Well, perhaps another day.

The Arts

Enter the 2020 Contest: Deadline March 15, 2020 $250 in Total Prizes Awarded! Named for a former Vermont activist to encourage creative writing by psychiatric survivors, mental health consumers and peers. One entry per category (prose or poetry); 3,000 word preferred maximum. Repeat entrants limited to two First Place awards. Entries are judged by an independent panel.

Send submissions to:

Counterpoint The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 or by email to:

counterpoint@vermontpsychiatricsurvivors.org

Include name and address.


16 EDITORIAL PAGE Editorial

Still Not Being Heard “Despite the existing services array that has been enhanced since 2012, there is a continuing need and opportunity to provide increased community capacity to offset unnecessary emergency room wait times or inpatient admissions.” Those are words from the Department of Mental Health’s January 2019 report entitled “Evaluation of the Overarching Structure for the Delivery of Mental Health Services.” The words led to some optimism among mental health advocates. Maybe this year’s governor’s budget would make some serious investments in community support to help people stay out of hospitals. Maybe peer initiatives that had been proposed, in particular for new peer-run community centers and crisis beds, would get some startup funding. Maybe there would be new money for housing. Maybe the budget would reflect this new recognition that instead of continuing to add more hospital beds, our health care system needs to add alternatives that create hope and that have proven to be successful in preventing crisis or helping to get beyond it. Only a few weeks later, the answer came. A small increase in funding was proposed to add six MyPad-type community slots. MyPad is a supported housing program in Burlington run by the Howard Center. Six beds. There was not a cent for expanding any peer programs; in fact, it actually proposed to cut the contract for training and support for peer-supported Wellness Recovery Action Plans. Instead, the administration’s budget focused on a few long-term projects that will increase institutionalization of people in Vermont with psychiatric labels. The plan to increase the number of locked “residential recovery” beds from seven to 16 continues to stumble slowly forward. Most people agree that the current trailers in Middlesex need to be replaced, but this is the most coercive long-term mental health program that exists in Vermont, and the focus is not merely on replacement, but on expansion. The budget coming out of the legislature this year will also allocate millions of dollars to the addition of 12 new high-security hospital beds at the Brattleboro Retreat that are expected to open next year. In fact, legislators said that it was the cost of running those new beds that slurped up any money that could have been used in the community. Meanwhile, the University of Vermont Health Network is continuing plans to invest $20 million, just for starters, in building a new psychiatric center on its Central Vermont Medical Center grounds. The majority of those estimated 25 new beds will be on locked units. The UVM network deserves credit for including psychiatric survivors in recent discussions about design plans – and peer support staff plans – for the new hospital expansion. But that doesn’t change the fact that this is a “more hospital beds” solution instead of placing a priority in the state for keeping people out of hospitals and institutions. None of this equals any sign of a new recognition that there is a need to “provide increased community capacity to offset unnecessary emergency room wait times or inpatient admissions.” None of it sounds anything like the commitment in our state law “to work toward a mental health system that does not require coercion.” After words of hope at the start of the year, the reality came crushing down when the governor announced his budget. Our voices are still not being heard. .

SUMMER 2019

Opinions


COMMENTARY

SUMMER 2019

17

Social Inequity and Mental Health This session, Vermont enacted a law requiring ethnic and social equity studies in public schools which included “people with disabilities” as a marginalized social group. (See page 8 for news report.) Below is a condensed version of testimony in the House Education Committee on January 23 addressing the issue of those who face harassment and discrimination as a result of a disability of any type.

By SARAH LAUNDERVILLE

I

t is the right time to move forward on this important legislation by bringing together an advisory group to develop ethnic and social equity studies standards as well as reviewing and making recommendations to the State Board of Education. Passing this bill will make a strong statement about the commitment from political leaders in our state in addressing systematic policy issues of racism, sexism, ableism, homophobia and other systematic discrimination of social and ethnic groups. The bill goes further, as well, and is inclusive of groups most affected by these systems and who are eager and willing to work on these issues. It will allow for a statewide eye toward understanding our full history, conversations of our full cultural heritage and learning from individuals who have systematically been left out, cast aside and harmed by the current system. We support the intersectionality of this bill as well. As groups come together, we hope this will rise up and address issues of people from multiple marginalized communities. In Vermont in 2017, the prevalence of disability among working-age people (ages 21 to 64) was 11.6% among whites; 22.9% among Black/African Americans; 13.1% among Asians; 48% among Native Americans; and 18.6 percent among persons of some other race. Our state has an awful history of oppression and torture of individuals with disabilities. As a leader in the eugenics movement, Vermont sterilized and institutionalized individuals with disabilities and other ethnic, social and racial groups in hopes for “good Vermont stock.” There is a long history of warehousing individuals with developmental and psychiatric disabilities as well. These important parts of our history are largely underplayed but are the basis for policy decisions and systems set up in our state. The context of history is important in terms of what those of us who have disabilities and work on policy issues believe need to change to encourage a world that is accessible to people with disabilities. You can see it within the

education system, in which accommodations for youth with disabilities are within “special education” as if it is something different and not within the norm. Disability is a natural part of life. It can happen to anyone at any time. But we treat it in our society as something different. We appreciate that the bill goes beyond curriculum and looks to school policies and the school environment as a whole. We still have in place ways to restrain and seclude children with disabilities in school settings, and we know from the 2015 report “Kicked Out! Unfair and Unequal Student Discipline in Vermont’s Public Schools” that “students with disabilities were nearly three times more likely to be suspended than students without disabilities.” We are also very supportive of the section of the bill which lays out the advisory working group that includes stakeholders with lived experience.

“There are very few people even with the most severe disabilities who can’t take control of their own life. The problem is that people around us don’t expect us to. We built a system, a political system, and a system of public policy based on old attitudes that actually allow us off the hook, to have no expectations, that believe that we will not work or participate in our communities when in fact we’ve discovered that the reality is just the opposite.” Ed Roberts (1939-1995) The Vermont Center for Independent Living is directed and staffed by individuals with disabilities and who are Deaf. When we were founded in 1979, that was a very new concept. Up until then, it was parents of people with disabilities who typically fought for disability rights. And the people who were most revered around disabilities were medical professionals. That was a problem for those of us in the

disability community because most medical professionals saw us somehow as broken or needing to be fixed. So, a group of people with disabilities came together and, drawing upon their own lived experience with disability, created our organization. Almost 40 years later, we are still working to dismantle ableism, so we know this work takes time. Well-intending people who don’t have disabilities often set the tone in education around disability and present to young people a set of ideas that perpetuates the idea that people with disabilities are either devalued or, to another extreme, inspirational. Both extremes set the tone for young people with disabilities as well as their non-disabled peers. In terms of the language of the bill, in the section on challenging “racist, sexist, gender or ability-based bias,” we would like to see a change from “ability-based” to “ableist.” Ability refers to “possession of the mean or skill to do something” while “ableist” is “discrimination and social prejudice of people with disabilities” and aligns with the intent of the rest of the sentence. Ableism has been defined by author Leah Smith as a set of beliefs or practices that devalue and discriminate against people with physical, intellectual or psychiatric disabilities and often rests on the assumption that disabled people need to be “fixed” in one form or other. Today is the birthday of disability rights activist Ed Roberts. I wonder if children in our classrooms are studying him today. He is considered the father of the Independent Living movement. Not the co-opted language of independent living facilities, but that of disability rights. He was a man who had polio and, using his lived experiences, created with others the philosophy and world of independent living in which individuals with disabilities would be able to live as they chose and that individuals with disabilities must be part of the systematic solutions: “We’re going to develop leadership that has a fundamental difference. “That is, it’s inclusive. “It believes in people, and in our strengths together. “And, we are going to change our society.” ~ Ed Roberts Sarah Launderville is the executive director of the Vermont Center for Independent Living and the president of the Vermont Coalition for Disability Rights. The Vermont Center for Independent Living is a nonprofit organization directed and staffed by individuals with disabilities and those who are Deaf to provide support and advocacy. The Vermont Coalition for Disability Rights is a coalition made up of organizations throughout Vermont that serve and advocate for individuals with disabilities.

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COMMENTARY 18 COMMENTARY

SUMMER 2019

Jonathan Jerome – In Memorium member of Jonathan Jerome was a longtime d was on its Vermont Psychiatric Survivors an 16, most of the Board of Directors from 2014 to 20 ard. He died in bo e th of y ar et cr se as g in rv se e tim ts were shared by December of 2018. These commen ainfield. a close friend, Sara Knutson of Pl We are so sad to learn of the death of Jonathan Jerome of Winooski. Jonathan had just attended the Intentional Peer Support trainers’ refresher and had been an advocate for and supporter of IPS for many years. His enthusiasm, passion and generosity have left memorable imprints. Jonathan died after being struck by a car during conditions of poor visibility while out walking his beloved canine companion, Lordeyes, on December 20, 2018. Lordeyes survived the accident and is receiving superb attention and care from the Humane Society of Chittenden County. Jonathan was a gentle and kind man with a large heart, who loved family and his community. He was born on April 5, 1956, and grew up in White Plains, New York. He was a graduate of Curry College and obtained his Masters in Social Work from Yeshiva University in New York City. Like many of us, Jonathan had his struggles. He suffered a brain injury at birth, which resulted in a variety of gifts and challenges as he sought to navigate life, personally, professionally and relationally: “No one knew much about learning disabilities when I was growing up. Others treated me as slow. I got bullied at school. I came home and hit walls from frustration. No one ever thought I would graduate college, get a master’s degree, or hold respected community roles. But I’ve done all that and more.” While he certainly did, that is not to say that Jonathan’s life was perfect or easy. He found it difficult to maintain conventional employment, as so many of us do. That led to a hidden gift, however, as it gave Jonathan much time to involve himself in the community and participate actively in a wide variety of organizations, both local and national. Jonathan was a board member of Vermont Psychiatric Survivors, as well as a longtime VPS support group leader. He spent countless hours at the Pathways Vermont Community Center in Burlington, where he co-facilitated IPS co-reflection, a Hearing Voices group and offered informal peer support. Jonathan was recently elected to the Board of the National Association of Rights Protection and Advocacy (NARPA), which educates, mentors

and advocates for the legal and human rights of individuals with psychiatric diagnoses to make their own choices regarding treatment, with a goal of abolishing all forced treatment. NARPA board members who knew Jonathan and celebrated his friendship described him as kind, generous, loyal, dedicated, sweet, gentle, faithful, full of joie de vivre and “dedicated to causes that he believed would make the world better for him and for all of us.” An interesting facet of Jonathan’s life journey was that he was trained as a social worker and spent many years in practice with that identity. When Jonathan took the Intentional Peer Support Core Training in 2013, it was a real paradigm-changer for him! Jonathan is survived by his brothers David and Richard and loving family far and wide, biological as well as chosen. Suffice it to say, we cherish you, dear brother – with a love that’s intentional and not time bound. In an interview from 2015, Jonathan shared about IPS and how it affected his journey. Below are some excerpts of Jonathan’s reflections:

My Journey With Intentional Peer Support By JONATHAN JEROME What draws me to IPS is the relationships and the way I can connect with people on an individual and relationship level – rather than as a professional or as someone who sits in the seat and views the other person as needing help or being fixed. So I like the feeling of we each see each other as equals and we’re there to develop the relationship and learn and grow from each other. A couple things happened to draw me to IPS. One was in my private practice back in New York. What I saw was that a lot of people I was working with were projecting or blaming when something I suggested didn’t work in their lives. Like it was my fault that they felt isolated when I suggested making a phone call to a friend. So I didn’t like being set up where I was being blamed for their problems. That’s the first. Then I met a friend who had a similar perspective to what I was developing. And I was like: “Yeah that just makes so much sense. Let’s spend some time together developing a mutual relationship where we can both learn and grow together rather than my making suggestions that would be great for my life but aren’t working for your life.”

And the other thing that happened was I got really frustrated with my viewpoint that you were there and I had all the magic answers and all I had to do was convey my knowledge to you. It felt like it left my half of the sharing who I am out of the equation, if that makes sense. When I actually took the IPS training, I don’t know if you remember this but I came with “You have to change my mind about how IPS works and its benefits. I’ve been sold a bill of goods.” But each day in our working together, I began to see the idea of equality and we’re all on the same playing field and it’s about learning who we each are in relationship to each other – not in a context of “You’re broken and I am here to fix you” but “How can we learn and grow and develop the relationship together so there’s a mutual benefit?” Well, that week blew my mind. So I could see how very clearly I didn’t want to be in the position I was coming in as – as the expert, as here to fix someone else. What I began to see was, by viewing other people as broken, I was developing a dependency – a co-dependency in the relationship for our existence. They needed me to fix them, and I needed them because I had to be paid and I

needed to feel like I had something valuable to offer. What I walked away with was I need people in my life just like before, but I feel the relationship we have now is one of connection and learning and growing rather than the disharmony of fixing. Shortly after the IPS training, I got involved with my local peer organization and attended their co-supervision – co-reflection – and began to be exposed to that whole philosophy of equality and relationship. What’s really important to me about co-reflection is I get to see how the other sees me. And that’s not always how I see myself. It’s like holding a mirror up to me and “Oh that’s what I look like or sound like or that’s how I present myself.” And I’m not always good at knowing the impact that I have on others, so here I have a mirror held up to me so I can talk about what I see and how it feels, and there’s a relationship again that’s being created by our common experiences as well as the experiences that aren’t common, but there’s some connection – little piece of connection – that makes us want to stick it out and expand that a little bit. Later I got involved in an IPS support group


COMMENTARY COMMENTARY. .

SUMMER 2019 and the group started to share facilitation of that, and that was a huge learning experience for me of how to create equality in the group. I came to group facilitation from the perspective of being a trained professional who has something to offer the group – ideas, information, teaching. So there’s an unequal relationship between myself sitting on the throne and the group sitting down below in audience, if that makes sense. So in school I learned about how to create cohesiveness in the group but with me outside looking in. In learning to do the facilitation of this IPS group, I learned to be a part of it – an equal part of the group. And so there’s a buy-in that I felt I was getting that really grabbed hold of me solidly. So solidly that IPS is part of my everyday life. As I get more experience with the principles of mutuality and worldview and who I am in relationship to you and who you are in relationship to me, then what we bring to the table as far as mutuality and our worldviews have become really important because it’s in learning about who you are in relationship to me and who I am in relationship to you that I feel more connected to the world in general and more alive, more excited, and it’s where I want to spend my time and energy. I view it as an opportunity to create a level playing field – where I’m engaged in the conversation and developing the relationship. I’m putting as much into it as the other person is. I think for me right now it’s about doing it together and my offering the feedback when there’s something that’s not working for me and your offering the feedback that’s not working for you or keeping us from connecting with each other. And there’s reciprocity and a reciprocal-ness. And when I feel like there’s an imbalance there, I can then say, “This is how I’m feeling, and is there a way we can shift something so we’re both engaged in this conversation?” IPS also helped me to see the disconnects differently. I think what used to happen is there would be a situation where tension was felt and it would be written off and I would be the loser. And now there’s a flicker of hope that I can move from the beginning – from that point of disconnect – to the end where there’s connection and beyond that. I can think of several situations where I’ve walked in a room thinking there’s mutuality and the people in the room are all on an equal playing field, and what I’ve found is this unequal, uneasy dynamic where there’s a power play involved and it feels like the relationship is not mutual or equal or where everyone has a buy-in. Instead there’s discomfort, and to sit in that at times can be really difficult. For example, I walked into a meeting where I thought there was going to be discussion of potential future employment. And there was a third person in the room sitting in the corner who I knew but was not introduced to me as to what purpose they were there. And it seemed to me like all the decisions were already made and there was no opportunity for discussion. So I walked in and this is what was presented and I froze. I sat there and listened, saying “ouch” to myself, but didn’t say anything to the other person. And in the moment didn’t know how to move to unfreeze myself because I didn’t feel like there was that opening that I need to feel. It’s really hard to talk about, even now,

because part of me then goes into beating myself up for doing it wrong. So I’m going to acknowledge that and then try to move away from that. I guess the benefit in freezing was it gave the other person the opportunity to express their point of view without interruption. I would imagine they would feel good. “He doesn’t have any response, so I’m off the hook. I can move away from my own discomfort.”

Jonathan was kind, sincere, and someone with a happy go-lucky demeanor who could get right to the point of things. Sometimes he was a voice of reason. Sometimes he challenged me to be simple straight forward and serene. Sometimes our relationship was incredibly difficult but it was always somehow deeply meaningful. J could acknowledge imperfection with a chuckle and honor difficulty with truth. To see J die in such a way was difficult and very tragic. I will always remember him as a friend and an example of good peer work. - Anonymous by request I’ve given that a lot of thought since that happened. And the first thing I would have wanted to do differently is to stop, take a breath and say, “Wait a minute. I thought this was a meeting where we were going to discuss, together, between each other the future possibility of employment. It’s uncomfortable to have a third person here who seems disconnected and not part of the conversation I imagined having. “What would be helpful – what I’ve experienced as being helpful – is having someone come with me to support me and to act as a second ear to what’s being said to me. And that’s something that I would feel comfortable with. “And I’d like to start over with a clear understanding of what the goals of this meeting for you are and the goals of this meeting for me are. So that there’s mutuality and we’re on the same playing field. And I have a better understanding of where you’re coming from and hopefully you a better understanding of where I’m coming from – and where we can move forward together in developing a relationship.” So in this example, my strength is that I sat in the discomfort and was willing to

19

listen to what this person had to say and give the space to do that. And some of the other strengths are about the desire for connection [in] relationship in general. And so is the willingness to be vulnerable and put myself in those situations where connections can happen that are at times vulnerable. The learning edges for me are in feeling comfortable in the discomfort to speak up when I’m having a strong feeling – a strong negative feeling about the interaction. So rather than be the deer stuck in the headlights, recognize that, take a breath and say, “Hold on a minute. I’m uncomfortable. Let me share what I’m uncomfortable about. And then is there a way to share, to negotiate, to move forward with both our perspectives included so that it feels like there’s reciprocity?” Also, I think to keep the focus about – rather than focusing only on the other – focusing on the relationship. Particularly I’m very aware in my daily life of trying to be more focused on coming from who I am as an individual and sharing myself first, which opens the door for the other person. There’s me in that as well as the other person or persons. That’s what really was missing in my clinical relationships at work, because I had to leave me out of it. The focus was on the person who was coming to me for help, and I was there to fix them. Now I have a buy-in where before it was all about what you shared with me, but I often felt there wasn’t the reciprocity of me sharing with you. So you would often share vulnerable personal experiences, and at times it felt like I wasn’t – I didn’t have a buy-in, so I wasn’t sharing who I was. I really appreciate that now as part of my learning about IPS and the equality that we see when the relationship has both people buying in – all the people buying in. I feel like I’m more present to others because of the foundation that’s been laid with IPS. So the connection has become stronger – like a back-and-forth sharing of who we each are. I also feel like I’m more available to others because it’s not about fixing them. What I learned as a kid was I so desperately wanted love that I would do anything to get it. But what I offered – what I did to that person had that string attached: “If I do this for you, then you have to love me.” Now I see love as a gift – and it’s intentional and not time bound..


COMMENTARY 20 COMMENTARY

SUMMER 2019

Why Peer Support Funding Matters These comments are edited from a presentation to the state legislature’s House Health Care Committee hearing on the mental health budget.

By VICKI WARFIELD

T

here are many impactful programs I could speak about and so much emerging research emphasizing the importance of peer relationships. But you have given me the unique opportunity to put a face to the issue. Perhaps by explaining why peer services matter so much to me, personally, I can provide a deeper understanding of the essential value of this field of mental health care. Until recently, my life had been characterized by a lack of connection. I grew up in a home seriously affected by mental health conditions and social isolation. We moved frequently and did not interact with the communities around us. I married fairly early, only to find that my spouse’s plans involved further relocations and social disconnection. By the time the youngest of our two children was a toddler, I knew that we needed help. However, without family, friends or community connections, I was unsure of what resources were available. A crisis prompted me to get in touch with an international aid organization. I asked this organization for their opinion on the safest and most secure community in which to settle and raise my children. They directed me to central Vermont, telling me that the community supports in this area are stronger and more welcoming than any other place they’d been. Over the past couple years, I have been continually amazed by the friendliness, openness and support of Vermonters. My children settled into school and made friends. I found a job I truly loved. Yet it became evident that I had my own mental health issues. I was having flashbacks. I would often freeze, my mind slowing or going completely blank. I would sometimes become unable to move, staring straight ahead, for several hours. I experienced frequent memory gaps — sometimes unaware of conversations I’d had just moments before. I turned to designated agencies, my primary care physician and private-practice therapists. My initial experiences were of practitioners either turning me away, explaining that they did not have the expertise to treat me, or doubting that my experiences were actually occurring. My issues escalated, ultimately resulting in a dissociative fugue, during which I suddenly found myself an hour from home with no memory of having left my apartment. Alarmed, I immediately checked myself into the nearest hospital, waiting for several days in the emergency department, before being admitted and receiving a diagnosis of post-traumatic stress disorder. While there, a social worker explained dissociation and trauma to me. The next year was a flurry of intensive “treatments.” My employers were very accommodating, but escalating memory issues necessitated my resignation and commencement of disability benefits. I diligently attended twiceweekly therapy appointments for a year and

regularly saw a psychiatrist. l read everything I could about trauma recovery and tried every suggestion. Still, my mental health did not improve. I cannot describe how frustrating it is, relying on a mind that simply cannot function in the ways that you need. It’s difficult to explain to a person that you have missed an appointment because one moment, you were about to leave, and the next, it’s three hours later and you are still standing in the same spot, unaware of where the time has gone. My therapist suggested a second hospital stay. While I was in the ED waiting for a psych bed to open up, I asked if there were any community resources I hadn’t tried. I said that I wasn’t sure I needed an inpatient stay. I just needed a way to address my symptoms. The hospital staff were respectful and courteous, but they had no suggestions. So, after five days in the ED, I think I spent about nine in the psych ward. That was followed by a two-week intensive outpatient therapy program. While medication has been helpful, none of the treatments I tried caused significant improvement. Yet, today, I am in a completely different place in my life. I am no longer significantly impacted by memory gaps. I have gone several months without a flashback and without freezing in place. Better yet, I’m happy. I’m mentally present. I really engage with my children. We play and laugh. And I’m successfully settled in a job that I love. I’m also aware that my condition is not unique. Rather, it’s a fairly common response to the unusual conditions that I have experienced.

That’s what peer support means to me. It’s connection. It wasn’t the therapies, the hospital stays or the doctor visits that got me to this place. It was peers. I found other people who had similar experiences. They understood my situation so much better than even the most well-intentioned doctors. We could even laugh about it together. When these peers succeed, they offer me a sense of hope for my own success. And when they struggle, I offer my own support and feel valued. I understood my own condition when I saw it reflected in the lives of others. That’s what peer support means to me. It’s connection. We humans are wired for it. Without human connection, there can be no mental health. The majority of mental health crises do not arise overnight. Rather, they are an accumulation of unmet needs that build until they reach a crisis level. This means that there are many opportunities for us, as a society, to work together to prevent mental health emergencies. Peer support is a particularly essential part of preventative health care. Support groups and peer relationships not only helped me to feel less alone, they provided practical advice and networking around childcare, accessing services, meeting basic needs and finding employment. I’ve seen the strength and connection that supportive peer communities provide, and I think it’s clear that they are immeasurably effective at maintaining stability and preventing crises. With the current crisis of emergency

department wait times and the impact this is having on Vermonters, now is an especially important time for all mental health programs to come together, re-examine our delivery of services, and find creative and effective solutions to address the needs of our communities. Hospitals cannot face this crisis alone. I’d like to offer a reminder that much time and effort has already been invested in moving away from an institutional model for mental health care in Vermont. Yet this de-institutionalization can only succeed if we continue to invest in community-based supports. I am so proud to live in a state that places such importance on the role of community, connection and self-determination. Yet, when I was facing my own mental health crisis, I was unaware of these valuable services. When I was in the emergency department asking about community supports, I believe that, had hospital staff been aware of these services, they would gladly have shared that information. I believe I could have avoided multiple hospital stays. I know there are many others currently in a similar situation. I also know that peer services offer a perspective not currently found in the traditional medical model of mental health care. Peer workers are more likely to meet a person where they are currently at, emotionally and cognitively. Outside of an institutional atmosphere, time and attention can be given to creating a sense of safety. Realistic, positive goals are identified, and plans include resources needed to meet these goals. Social supports might be strengthened by introducing the individual to others who have had similar experiences. Each plan involves a relationship of equals — no one is considered more of an expert than the individual. This situation naturally encourages trust and de-escalation. The focus is on the positive rather than negative. Strength rather than illness. Connection rather than isolation. And autonomy rather than reliance on an institutional authority. We already have strong, peer-run organizations and trained peer workers providing support to Vermonters — diverting individuals from over-taxed inpatient facilities. Yet we are operating on shoestring budgets at a fraction of our potential, and we are not reaching all Vermonters. I would like to quote an excellent article that was recently published in Psychology Today [“The Urgent Need for Trauma-Informed Healthcare” by Sheela Raja, PhD]. The article is about the close relationship between trauma and mental health and ends in saying, “Ask your elected officials if they support efforts to create trauma-informed hospitals and communities, which involve collaborations between healthcare, behavioral health, and neighborhood resources. All it takes is one supportive, buffering relationship to change the course of someone’s life.” As peer services, we are able to offer the supportive relationships that change lives, but we need your help to reach every Vermonter in need. At the time these comments were presented, Vicki Warfield was the coordinator for the Wellness Workforce Coalition, representing 15 peer-run agencies and organizations with peer programs, supporting people with mental health, disability and substance use issues through training and advocacy.


COMMENTARY .

SUMMER 2019

21

Rethinking Bipolar Diagnoses: II By SARAH KNUTSON Part II Let’s suppose you tell me that the wreckage I create in a ‘bipolar’ state of mind is due to a genetic or disease condition that renders my brain structurally defective. If that’s the case then any hope I have of effective treatment is logically the purview of brain scientists, doctors and surgeons. My major role is to pray that they figure out a cure, and soon. On the other hand, suppose what’s really driving my so-called ‘mania’ is that my stress/ survival response is firing wildly. Then the solution is a lot more within the realm of something I can work with.Yes, I have some learning to do. I need to understand the basics of how the survival system operates. I need to learn what turns it on – and even more importantly, what turns it off. But if I have that basic knowledge, then I have a tremendous amount I can work with through my own observation and trial and error. Here are some basics that I’ve found useful for me in working with ‘mania’:

Turning Off ‘Mania’ If I want to function in this world, my body basically gives me two choices: 1. A survival (stress) response that revs me up and keeps me running and chasing. 2. A restorative system (parasympathetic) that offers less excitement but the option of real serenity and sustainability (well-being). My personal belief is this: I have to decide ‘which wolf I want to feed.’ For me, that means actively choosing which bodily system I want to live in and relate to life from a human being. Is it the body of trust and connection — of sustainability, restoration and well-being? Or is it the body of excitement, ambition and hot pursuit? Setting my mind to go for the trust and connection body is about half the battle. Here are some other tips I’ve found useful: 1. The survival (stress) system goes on for a reason. It is signalling me that something I care about feels unsafe or at risk. Once that risk is addressed, the system has no reason to stay on. It turns off naturally once I start to feel secure. As a result, I generally approach my activation with an eye to restoring a sense of safety and well-being. I ask myself what I’m scared of and try to listen honestly for the answer. Sometimes just doing this much — honestly owning that I’m scared of something and facing the truth of what that is — can help a lot.

What turns me on? The survival response turns on from fear. Predator fear and prey fear look a little different. Predators get scared of losing opportunities. Prey get scared of becoming them. But fear is still the basic trigger that activates the system.

My personal belief is this: I have to decide ‘which wolf I want to feed.’

What turns me off? I used to think there was no way to shut this thing down. It had been a part of me — and basically running my life — for as long as I could remember. I couldn’t imagine how I could work with it. I had tried so many things, none of them really seemed to work. The drugs shut me down, but killed everything I enjoyed about myself along with it. I felt stuck. Things started to change when I began to see my body as my ally, rather than my enemy. The simple fact is this: My body basically hates being in survival mode. The survival system burns up energy and resources like they’re going out of style. It’s simply not sustainable. This other option is the rest and refresh mode of the parasympathetic nervous system. You don’t hear much about this system. It’s considered boring, compared to fight or flight. It’s basically involved in repair and maintenance. But, when you think about it, there is tremendous wisdom and potential in this restorative bodily system. It’s what lets us digest food, keep a steady heartbeat, not forget to breath, replenish resources and sleep at night. It’s what allows us to grow, heal injuries, defend against infection, reproduce — and love and connect with ourselves, each other and whatever is beyond. Better yet, this restorative (parasympathetic) part of us has been with us since the womb. It knows our needs and how to meet them better than anyone else could. No cell in the body is even more than five cells away from the capillary network it manages. It literally does brain surgery on us every night while we sleep, to heal the damage of the day.

2. There’s a bit of a trick to making conscious contact with the body of well-being (restorative system). I can’t access this part of me by trying harder or forcing myself to feel something. The harder I try, the more my survival (stress) system revs up. The restorative (well-being) system turns on when I make a decision to let go and allow myself to be helped. I consciously shift my focus from trying to fix it to actively cultivating my capacity to trust and be cared for. This parallels the wisdom of many religions (and also Twelve Step programs). My personal belief is that this is not an accident, but more on that another time. 3. As someone with a boatload of social trauma, and a really bad relationship with my body historically, making this shift has not come easily. Nevertheless, I’ve found it possible with practice. Over time, the internal motor has begun to slow down. Everything is not always a crisis anymore. It doesn’t always have to get fixed right away — and sometimes not at all! There is now a frame of mind that I can access where everything really is okay just the way it is. 4. In trying to lessen the amount of time I spend in survival reactivity, it helps to learn to recognize the signs of amping up. I can then use that ‘biofeedback’ as a mindfulness bell to return to the body of well-being. Once back in that state of relative well being, I can begin to gently inquire into what is scaring me and allow possibilities for addressing it to bubble up. 5. The long and the short of it is that there’s a zillion ways to feel scared, but also a zillion resources for feeling safer. There’s also a zillion options for finding something or someone I can

potentially put my trust in. That’s where the diversity of life and experience on planet earth is a huge asset. 6. It can also help to do things that physically reassure my body and the cells in me that we are not in crisis. I try to find ways to be with myself that are totally different from how my body would act if I were running from a bear. This includes moving slowly and intentionally, activating my curiosity about small things, doing stuff that takes fine motor coordination instead of large muscle groups, making tiny gentle touching movements one finger at a time, wiggling my toes one toe at a time, doing something familiar and easy like making my bed or washing a dish, playing my guitar… the possibilities are endless. 7. It’s important to be patient. As Sapolsky points out, the transition from survival (sympathetic) activation to restorative wellbeing (parasympathetic) is a delicate one. It’s bad for the body to have both systems firing at the same time (like heart attack bad). Also, it takes a while to clear one set of hormones from the bloodstream and introduce new ones. Thus, the body needs time to make a safe transition. This takes a while — a minimum of 10-20 minutes, and more likely an hour or two. Sometimes, I even find it happening slowly over several days when I’ve been on a real emotional bender. 8. Waiting out this transition can feel really uncomfortable. The more activated I am, generally the harder it is to sit tight. But if I’m able to keep trusting in the process (instead of panicking and ratcheting myself back into stress reactivity), my body gets progressively more comfortable. My muscles relax as my cardiovascular and endocrine systems stop pumping and priming them for action. The circulatory system starts re-routing oxygen and glucose to my stomach, intestines, pancreas, kidneys and prefrontal cortex. Queasiness, cravings and gut discomfort dissolve as my digestive system reboots into a context of relative calm. Rational capacities return, and big-picture perspective and judgment radically improve as my brain has increasingly more to work with. The end result is that I become progressively interested in — and capable of enjoying — rest, relaxation, sleep, healthy food, recreation, mundane social interactions and life management tasks. My body repairs and restores. Eventually I feel human again. This article is a condensation of the second section of a longer piece by Knutson that got 6,000 hits in a week on Mad in America. The full piece can be accessed at www.madinamerica. com/ 2018/ 04/ how-the-human-stressresponse-explains-away-bipolar-disorder. The first section, introducing the rethinking of a bipolar diagnosis, was published in the winter, 2018, issue of Counterpoint, which can be found at https://www.vermontpsychiatricsurvivors. org/newspaper/counterpoint/ Sarah Knutson is an ex-lawyer, extherapist, survivor-activist from Plainfield. She is an organizer/blogger for Peerly Human (peerlyhuman.blogspot.com) and the Wellness & Recovery Human Rights Campaign. Sarah organizes free, peer-run, peer-funded opportunities for ordinary people to offer, receive, share and experience the radically transformative power of unconditional personhood and our own authentic, vulnerable humanity.


22 COMMENTARY

SUMMER 2019

So Many Narratives: By CALVIN MOEN

T

he following “interview” is actually a selection from an internet chat – or several chats over a few days – between Kaz and me. It is an example of the ways in which we explore and refine our viewpoints through ongoing dialogue, how we influence each other’s perspectives through reflection and curiosity. Learning happens in relationship. As Kaz put it, “Paradigm shifts and progression in mutual understanding can happen without shattering space and time.” Or maybe space is constantly being shattered and rebuilt, gaining flexibility and possibility. Kaz: I’ve been thinking about narratives a lot since reading Akiko’s recent publication (“The Recovery Narrative: Politics and Possibilities of a Genre.” Woods, A., Hart, A. & Spandler, H. Culture, Medicine, and Psychiatry. 2019.) and I’ve been thinking about the need for resistance narratives, not just recovery narratives. Calvin: I only read the introduction. K: I can summarize. There are two recovery narratives that essentially are the same narrative but they are sometimes presented as hugely opposing stories. A mad person in distress either learns about their condition and adheres to treatment and recovers, or a psychiatrized person in distress and sick from drugs comes off their meds and rejects their diagnoses and recovers. C: Yeah, in the intro it's posed as either recovering from mental illness via psychiatry or recovering from trauma via self-discovery and rejection of psychiatry. K: And young people with both narratives are given prominence and a platform to share their experiences and given jobs and interviewed, and then everyone forgets about them and they fade away. And no one cares if they fall back into distress and turmoil. “Recovery porn.” C: Is that their critique, then, that it gets commodified? K: Yes, and that it’s only a narrative, a genre, and not actually representative of most people’s lives. But that becomes the goal of every mental health center and peer support community: to get people to recover. C: Because it has to be highly stylized to fit the format? They give Eleanor Longden’s “The Voices in My Head” as an example, which is a literal TED talk. K: It becomes policy. C: The authors suggest it was co-opted. Does that indicate recovery stories may have had power when those stories belonged to the people telling them? K: Or maybe let’s just let go of this idea that a certain story arc is the benchmark everyone should strive for? That is my stance right now: that we have so many stories and they are beautiful. And someone’s story can be beautiful even if they never come off psych drugs or never hold a full-time job.

C: So the basic premise is that both recovery narratives are damaging in similar ways because they become tools of bootstrap ideology and ableism? K: Yes. C: We’ve all been conditioned to tell that story, right? K: And paid to do it. C: Absolutely. Rewarded in all kinds of ways. K: Social media fame, asked to do talks and workshops, move up from peer support positions into trainer positions when the peer industry has a concrete ceiling and virtually no room for advancement. I don’t think anyone is going to pay me to give trainings if I go up there and talk about killing gods and obsessing over thermodynamics and going on and off of meds repeatedly.

There are two recovery narratives that essentially are the same narrative but they are sometimes presented as hugely opposing stories. A mad person in distress either learns about their condition and adheres to treatment and recovers, or a psychiatrized person in distress and sick from drugs comes off their meds and rejects their diagnoses and recovers. C: They should, though. K: I feel like this is why I didn’t really want to do a Coming Off Psych Drugs training with you, is I can’t claim or sell that narrative. I came off psych drugs, and then my kid went to an oppressive kindergarten and I got a chronic migraine and broke down completely. I was scared of taking anything to help my head because Big Pharma is bad. Then I couldn’t justify that idea with also wanting testosterone made by Big Pharma. Then I freaked out at a few hospitals. Then I started

taking psych drugs. And nothing is resolved; there is no recovery, though I’m in less pain. Compazine and gabapentin saved my life. And I might still die. (We’re all going to die.) C: In addition to the co-opting by clinicians and peer support, have we internalized the need for the recovery narrative in our movement? K: I do think there’s something to be expressed in this need to prove our value and worth and strength because of oppressive psychiatry. Let’s just not get abusive with our show of strength. The “coming off of psych drugs/recover from effects of psych drugs” narrative – it’s an important story that is true for many people, but there are so many other stories that get lost. Stories where people stay on psych drugs and fight against coercion and force or organize mutual support networks to work towards our collective survival. There are also people who finally take drugs after years of distress with no relief and find them helpful, and maybe some of those people advocate for more access to drugs without gatekeeping. I just read a blog post about a woman who says heroin saved her life, and I was in tears. It resonated so strongly with me. I was super anti-drug there for a while, and it felt awful. C: I’ve had a much easier time hearing that heroin saved someone’s life than hearing psych drugs saved someone’s life. The latter just seems to fuel the system narrative. K: Yeah, that’s probably true. I think we lose a lot of people who could be organizing with us against coercion and sanism, though, because that has been their experience of psych drugs. When I got sort of radicalized against Big Pharma, I pissed a lot of people off. At the time, I felt like it was unfair that they were angry with me. I remember thinking that they were part of an oppressive system. But I saw those same people complain about their doctors not listening to them or about hospitals being traumatic or friends and family rejecting them due to their diagnoses. They’re all my people. The two dominant recovery narratives are basically “this drug saved my life” and “coming off these drugs saved my life.” C: How does “being locked up saved my life” or “being force-drugged saved my life” fit in? Because they seem adjacent. K: Taking a drug with informed consent (as informed as possible) isn’t violence. There were times when I totally believed I deserved violence or when I was a kid that it was for my own good, but that didn’t make that abuse OK. C: And yet those are also considered recovery narratives.


COMMENTARY COMMENTARY ..

SUMMER 2019

23

A Dialogue With Kaz DeWolfe K: Yeah, they are, and those aren’t ones I want to fuel and I want to be critical of and talk about abuse and power structures. C: I just have trouble drawing that line sometimes, on account of how little informed consent actually exists. K: I am internally critical of all recovery narratives and find them often full of coercion, but people feel hurt if I voice that. Laura Delano writes and talks about coming off drugs and then sitting with her pain, and I don’t want to do that; I don’t want to sit with all this pain. I want to smash things and burn myself and cry with this pain, not sit with it. I find assertions that I should sit with my pain feel violent. C: For the Mad Pride march this year, we’re using Phoebe Sparrow Wagner's art piece of a fist that’s in a leather restraint cuff [such as those used to restrain psych patients]. The text she paired with that image says, "I didn't recover, I just woke up." What does that suggest as a counter to recovery narratives? K: Consciousness raising, building community, forming support networks, participating in online activism, participating in advocacy. Mad pride. Advocating for accommodations. Fighting for disability benefits and supportive housing. Painting and writing our stories. Holding space for each other as a radical act of resistance. But at no point do we require each other to recover into sanity, though it can happen and that’s cool too. C: What if I want to reject notions of sanity as a construct? If I determine that I never had anything to recover from in the first place? Can that framework exist side by side with disabled identities? K: Absolutely. That’s another way out of the stigma paradox: that the framing of “likenormal” and “unlike-normal” both center something we’re deciding is “normal” and there is no such thing. C: What inspired this diagram? K: This combines the “stigma paradox” with the idea of recovery narratives, sort of graphing them on these axes. Psychiatry as a framework tends to conceptualize us as inherently different from people without psychiatric labels. We have disorders, unlike typical people. Survivors, as a reaction to that paradigm, tend to conceptualize ourselves as experiencing normal reactions to trauma or distressing circumstances: we’re just like everyone else. The problem I see is that both recovery narratives have a goal of assimilation; we’re to cast off our madness either through medication and therapy or through coming off our meds and healing our trauma. I was just recently critiquing the idea of not acting like people are fragile and saying that I think we can hold space for people when they are feeling particularly fragile and need an accommodation in the space. Demonizing fragility is tied to the drive to prove our “likeness” and for assimilation. I think there are portions of the community that are total bullshit, where saying “I’m bipolar” is profanity and asking for an accommodation makes you a snowflake. There are too many psych survivor spaces that could be really supportive and healing but are largely only accessible if you’re able to code-switch and unlearn diagnostic language, even if you need that language to access benefits and find people with shared experiences. Some people

will say that they need the space to be free of diagnostic language, that it is a trauma reminder for them. If that is the case, doesn’t that seem like we are actually fragile (which I think is fine)? It seems like we’re less accommodating when it comes to other potential trauma reminders. We as peer workers and facilitators don’t ask that people not speak about sexual assault or violence, but we ask people to use language outside of the medical model. I think the real reason for the anti-diagnostic language space is that a lot of people in our community think that diagnoses are limiting beliefs, and they want people to move past those in order to recover from them.

[T]he framing of “likenormal” and “unlikenormal” both center something we’re deciding is “normal” and there is no such thing. I just met someone with the same perceptions of space and meaning as me, and he’s into quantum mechanics and has been to prison. He literally said, “I’m afraid to use the wrong words here because of how they will resonate in the space,” and I’m like, that is my entire existence.I sat on my couch this past winter and crocheted granny squares and was visited by a vision of my dead autistic great aunt and we talked about institutional violence. My using a label for myself doesn’t stop any quests for meaning or finding community or creating culture. It’s just a word. C: I’ve been there, not wanting anyone to use diagnostic language. I’m mostly over it. K: So have I, and then I realized I was essentially just hating disabled people. C: I made a distinction between identity labels and diagnostic labels and had to realize they could use the same words. K: Exactly, and sometimes all we have is a word that’s also a medical one. C: I can identify as

depressed but not want to be diagnosed with depression. And also have to be careful where I use that word. K: Careful how? C: I don’t want to tell someone I’m depressed and then they suggest I need drugs or therapy because of it. Which happens all the time. K: Yeah, I find people do that to me no matter what language I use. And without other options, I’ve decided, “Yeah, why not?” C: True. I told someone that winter is really hard for me. I got “Have you tried antidepressants?” K: “Have you tried light therapy?” “Have you tried vitamin D?” “Have you tried yoga?” They just run down a roster of canned suggestions. And for me, winter is hard because it reminds me of a time when I was cold and scared. And the cold makes all my old injuries hurt. But I don’t get the opportunity to talk about that, it’s just “Have you tried______,” which just means “Don’t bother me with your problems.” C: So how do we make room for these conversations? How do we move up that “liberation” axis rather than trying to assimilate into expectations of “sanity”? K: I think the way out of the stigma paradox and the way out of conforming to either recovery narrative is to celebrate all of our Mad lives and our individual stories. Narratives are important to any social justice movement. We can grow and expand our movement by including more and more voices. We can highlight resistance narratives, liberation narratives, victim narratives, restorative justice narratives, acceptance narratives, inclusion narratives. Within the Mad Pride movement, the goal doesn’t have to be recovery. C: That sounds like what we do with the Mad Pride March. The signs people carry, the chants, the speakers at the rally, the open mic for personal stories, poems, and songs – it’s like a public demonstration of what we’ve been advocating for all year: more voices that don’t fit into the dominant framework. K: Yes, the Mad Pride March is one rare space where all our narratives can have a voice and a platform. I made signs and wrote chants last year, but I was feeling too drained on the day of to talk at the mic. I plan on talking this year, though. I really do just want to create space and a movement where every voice has resonance.

Calvin Moen is the training director for Vermont Psychiatric Survivors and does grassroots organizing for mutual support in Brattleboro. Kaz DeWolfe is the communications coordinator for Vermont Psychiatric Survivors and the co-editor of Radical Abolitionist, a Cognitive Liberty Blogspace.


24 Resources Directory SURVIVOR PEER SERVICES Vermont Psychiatric Survivors Peer Support Groups

SUMMER 2019

NATIONAL SUICIDE PREVENTION LIFELINE 1-800-273-TALK (8255) 24/7 confidential support

BRATTLEBORO: Changing Tides, Brattleboro Mem.

Hosp, 17 Belmont Ave., Brattleboro; every Wednesday, 7-8:30 p.m. Call John at 802-258-0782 BENNINGTON/UCS: United Counseling Service, 316 Dewey St., Bennington; Mondays and Wednesdays, noon-1 p.m. Call Barbara at 802-442-5491 NORTHWESTERN: St. Paul’s United Methodist Church, 11 Church Street, St. Albans; 1st and 3rd Tues, 4:306:30 p.m. Contact Jonathan at jerome5@yahoo.com RUTLAND: Wellness Group, VPS Office, 128 Merchants Row, Suite 606; every Wednesday, 5-7 p.m. Call Beth at 802-353-4365

VPS is a membership organization providing peer support, outreach, advocacy and education 128 Merchants Row, Suite 606, Rutland, VT 05701 802-775-6834

www.vermontpsychiatricsurvivors.org Peer Support WARM LINES

PATHWAYS VERMONT SUPPORT LINE (STATEWIDE): 833-888-2557; every day, 3 p.m.- 6 a.m. [833 - VT-TALKS]

PEER PLUS (STATEWIDE):

(802) 595-0588; 7 days/wk, 6-9 p.m.

MUTUAL SUPPORT NETWORK THE HIVE: info@hivemutualsupport.net www.hivemutualsupport.net 802-43-BUZZ-3 (802-432-8993)

CRISIS RESPITE

Alyssum, 802-767-6000; www.alyssum.org; information@alyssum.org

VERMONT PSYCHIATRIC SURVIVORS OUTREACH AND PATIENT REPRESENTATIVES 802-775-6834 F: (802) 775-6823 info@vermontpsychiatricsurvivors.org

HOSPITALIZATION ALTERNATIVE

Soteria House, information and online application at www.pathwaysvermont.org/what-we-do/our-programs/soteria/ or call Pathways Vermont Intake Line, 888-492-8212, ext. 140

Peer Centers & Employment Support ANOTHER WAY, 125 Barre St, Montpelier, 802-229-

0920; info@anotherwayvt.org; www.anotherwayvt. org; see website for events calendar. PATHWAYS VERMONT COMMUNITY CENTER, 279 North Winooski Avenue, Burlington, 888-492-8218 ext 300; www.pathwaysvermont.org/what-we-do/our-programs/pvcc; www.facebook.com/PathwaysVTCommunityCenter

Vermont Recovery Centers WWW.VTRECOVERYNETWORK.ORG BARRE, Turning Point Center of Central Vermont, 489

Vermont Federation of Families for Children’s Mental Health Statewide support for families of children, youth or young adults in transition who are experiencing or at risk to experience emotional, behavioral or mental health challenges. 800-639-6071, 802-876-7021

Vermont Family Network Services and support for families of children with special needs, including related to early childhood, health, mental health, general education, special education and transition. 800.800.4005

Pride Center of Vermont

LGBTQ Individuals with Disabilities Social and Support Groups: Connections and support around coming out, socializing, employment challenges, safe sex, self-advocacy, and anything else! Burlington, Wednesdays, 4:30 p.m. at Pride Center, 255 S. Champlain St.

Brain Injury Association

Support Group locations on web: www.biavt.org; or email: support1@biavt.org; Toll Free Line: 877-856-1772

DBT Peer Group

Peer-run skills group. Sundays, 4 p.m.; 1 Mineral St, Springfield (The Whitcomb Building). tinyurl.com/PeerDBTVT

Trans Crisis Hotline

The Trans Lifeline (dedicated to the trans population) can be reached at 1-877-565-8860.

BRATTLEBORO, Turning Point Center of Windham County, 39 Elm St.; 802-257-5600; tpwc.1@hotmail.com

BURLINGTON, Turning Point Center of Chittenden

County, 191 Bank St, 2nd floor; 802-861-3150; GaryD@ turningpointcentervt.org or www.turningpointcentervt.org

MIDDLEBURY, Turning Point Center of Addison County, 228 Maple St, Space 31B; 802-388-4249; tcacvt@ yahoo.com MORRISVILLE, North Central Vermont Recovery Center, 275 Brooklyn St., 802-851-8120; recovery@ncvrc.com

RUTLAND, Turning Point Center, 141 State St; 802-7736010; turningpointcenterrutland@yahoo.com

SPRINGFIELD, Turning Point Recovery Center of Springfield, 7 Morgan St., 802-885-4668; spfldturningpoint@ gmail.com

ST. ALBANS, Turning Point of Franklin County, 182 Lake St; 802-782-8454; tpfcdirection@gmail.com

Public Community Mental Health COUNSELING SERVICE OF ADDISON COUNTY, 89 Main St.,

Middlebury, 05753; 802-388-6751

UNITED COUNSELING SERVICE OF BENNINGTON COUNTY;

PO Box 588, Ledge Hill Dr., Bennington, 05201; 802-4425491

CHITTENDEN COUNTY: HOWARD CENTER, 300 Flynn Ave., Burlington, 05401; 802-488-6200

FRANKLIN & GRAND ISLE: NORTHWESTERN COUNSELING AND SUPPORT SERVICES, 107 Fisher Pond Road, St. Albans, 05478; 802-524-6554

LAMOILLE COUNTY MENTAL HEALTH SERVICES, 72 Harrel

Street, Morrisville, 05661; 802-888-5026

NORTHEAST KINGDOM HUMAN SERVICES, 181 Crawford

Road, Derby; 802-334-6744; 800-696-4979, 2225 Portland St., St. Johnsbury; 802-748-3181; 800-649-0118

ORANGE COUNTY: CLARA MARTIN CENTER, 11 Main St.,

Randolph, 05060-0167; 802-728-4466

RUTLAND MENTAL HEALTH SERVICES, 78 So. Main St., Rutland, 05701; 802-775-2381

WASHINGTON COUNTY MENTAL HEALTH SERVICES, 9 Heaton

St., Montpelier, 05601; 802-229-6328

WINDHAM AND WINDSOR COUNTIES: HEALTH CARE AND REHABILITATION SERVICES OF SOUTHEASTERN VERMONT,

390 River Street, Springfield, 05156; 886-4500; 51 Fairview St., Brattleboro, 05301, 802-254-6028; 49 School St., Hartford, 05047, 802-295-3031

LGBTQ Youth Crisis Hotline:

24-Hour Crisis Lines: Involuntary Custody Screening

Around-the-clock help via text: 741741 for a reply explaining the ground rules; message routed to a trained counselor.

The Trevor Lifeline now at 866-488-7386. TrevorText Available on Fridays (4-8 p.m.). Text the word “Trevor” to 1-202-304-1200. Standard text messaging rates.

ADDISON COUNTY: Counseling Services of Addison County

NAMI Connections Support Groups

BENNINGTON COUNTY: United Counseling Service, 802442-5491; (Manchester) 802-362-3950

BENNINGTON: Every Tuesday 12-1:30 pm; United Counseling Service, 316 Dewey Street, CRT Center

802-388-7641

CHITTENDEN COUNTY: Howard Center (adults) 802-4886400; First Call: (child/adolescents) 802-488-7777

BURLINGTON: Every Thursday 3-4:30 pm; St. Paul’s Epis-

FRANKLIN AND GRAND ISLE COUNTIES: Northwestern Coun-

BERLIN: Second Thursdays each month, 4-5:30 pm; Central

LAMOILLE COUNTY: Lamoille County Mental Health, Week-

copal Cathedral, 2 Cherry Street (enter from parking lot) Vermont Medical Center Board Room, 130 Fisher Road.

RUTLAND: Every Sunday 4:30-6 pm; Wellness Center (Rutland Mental Health) 78 South Main St. (enter from Engrem St.) ST. JOHNSBURY: Thursdays 6:30-8 pm; Universalist Unitarian Church, 47 Cherry St.

NATIONAL ALLIANCE ON MENTAL ILLNESS-VT (NAMI-VT)

802-876-7949 x101, 600 Blair Park Road, Suite 301, Williston, VT 05495; www.namivt.org; info@namivt.org

seling and Support Services, 802-524-6554; 800-834-7793

days 8 a.m.-4 p.m. 802-888-4914; Nights and weekends 802-888-4231

ESSEX, CALEDONIA AND ORLEANS: Northeast Kingdom

Human Services 800-696-4979

ORANGE COUNTY: Clara Martin, 800-639-6360 RUTLAND: Mental Health Services, 802-775-1000 WASHINGTON COUNTY: Mental Health Services, 802-229-0591 WINDHAM,WINDSOR COUNTIES: Health Care and Rehabili-

tation Services, 800-622-4235

Please contact us if your organization’s information changes: counterpoint@vermontpsychiatricsurvivors.org Veterans’ Services

Vermont Veterans Outreach

WWW.VERMONTVETERANSSERVICES.ORG

BENNINGTON AREA: 802-442-2980; cell: 802-310-5391 BERLIN AREA: 802-224-7108; cell: 802-399-6135 BRADFORD AREA: 802-222-4824; cell: 802-734-2282 COLCHESTER AREA: 802-338-3078; cell: 802-310-5743 ENOSBURG AREA: 802-933-2166; cell: 802-399-6068 JERICHO AREA: 802-899-5291; cell: 802-310-0631 NEWPORT AREA: 802-338-4162; cell: 802-399-6250 RUTLAND AREA: 802-775-0195; cell: 802-310-5334 VERGENNES AREA: 802-877-2356; cell: 802-881-6680 WHITE RIVER AREA: 802-295-7921; cell: 802-881-6232 WILLISTON AREA: 802-879-1385; cell: 802-734-2123 OUTREACH TEAM LEADER: 802-338-3022; cell: 802-881-5057 TOLL-FREE HOTLINE (24/7) 1-888-607-8773

HOMELESS PROGRAM COORDINATOR: 802-742-3291 BRATTLEBORO: Morningside 802-257-0066 RUTLAND: Open Door Mission 802-775-5661; Transitional Residence: Dodge House, 802-775-6772

BURLINGTON: Waystation/Wilson 802-864-7402 FREE TRANSPORTATION: Disabled American Veterans:

Toll Free: 1-866-687-8387 X5394

Homeless?

Vermont Veterans Services (VVS) program for homeless veterans with very low income, call 802-656-3232.

ST. JOHNSBURY, Kingdom Recovery Center, 297 Sum-

www.MakeTheConnection.net

WHITE RIVER JUNCTION, Upper Valley Turning Point, 200 Olcott Dr; 802-295-5206; mhelijas@secondwindfound.org; secondwindfound.org

Web site sponsored by The Department of Veterans Affairs with testimonials by veterans to help connect with the experiences of other veterans, and with information and resources to help transition from service, face health issues, or navigate daily life as a civilian.

mer St; 802-751-8520; c.boyd@stjkrc.org; j.keough@ stjkrc.org; www.kingdomrecoverycenter.com

Samaritans Hotline

A non-reporting support line (will not call police or mental health services without permission.) 800-365-4044

Crisis Text Line

N. Main St.; 479-7373; tpccvbarre@gmail.com

BENNINGTON, Turning Point Center, 465 Main St; 802442-9700; turningpointbennington@comcast.net

Counterpoint publishes this resource directory to allow readers to seek out choices for support. Counterpoint has not reviewed or evaluated the quality or biases of these resources, and makes no representation about their value for any individual.

VA Mental Health Services

VA HOSPITAL: Toll Free 1-866-687-8387 MENTAL HEALTH CLINIC: Toll Free 1-866-687-8387 Ext 6132 OUTPATIENT CLINICS: Bennington: 802-447-6913; Brattleboro: 802-251-2200; Burlington Lakeside Clinic: 802-6577000; Newport: 802-334-9777; Rutland: 802-772-2300 VET CENTERS: (Burlington) 802-862-1806; (White River Jnct) 802-295-2908