NEWS, COMMENTARY, AND ARTS BY PSYCHIATRIC SURVIVORS, MENTAL HEALTH PEERS, AND OUR FAMILIES
VOL. XXXVI NO. 2
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FROM THE HILLS OF VERMONT
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SINCE 1985
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FALL 2021
Improving Emergency Psychiatric Assessment, Treatment, and Healing MONTPELIER – With new attention to the increases in emergency room use for mental health crises, a national expert was brought in for a conference this summer to advise local hospitals about improving the quality of care. He proposed a model called EmPath – emergency psychiatric assessment, treatment, and healing – which creates a more welcoming space in a separate part of the hospital where treatment can begin, and average stays are less than 24 hours. The model aligns with many features proposed by psychiatric survivors except for the most basic one: that it be peer-led and communitybased as an alternative to hospital ERs. More that 100 people attended the conference by Zoom, about half from area hospitals and the rest from a broad array of providers, state administrators, other health organizations and the public, according to the Vermont Program for Quality in Health Care, which co-hosted the event with the Vermont Association for Hospitals and Health Systems. Scott Zeller, MD, asserted that it was “wishful
thinking” that community crisis centers could keep people out of ERs because their exclusion criteria limited them to help those with “mild to moderate symptoms.”
“We need to change the whole mindset” to be able to actually help people instead of leaving them to wait for days for a transfer to an inpatient bed. He said he supported such crisis centers, but people in severe crisis still end up being sent to ERs, and that it is there that “we need to change the whole mindset” to be able to actually help people instead of leaving them to wait for days for a transfer to an inpatient bed.
Zeller is Vice President for Acute Psychiatry at Vituity, a hospital consulting group, and spent years as an emergency room psychiatrist. He described the problem as an ER perspective that its role in psychiatric care is to do medical screening and “send you to a psych hospital.” That ignores the legal obligation to treat mental health emergencies “with the same level of attention” as any other health emergency. The increase in emergencies and lack of beds results in days of waiting, and people who are “often in a lot of anguish” are left suffering and sometimes escalate into aggression, he said. Those responses are then seen as criminal behavior and the response is to call security, use restraints or call the police when these are actually symptoms of an illness, he added. He likened it to telling a person, “stop having that asthma attack or I’m calling security,” instead of intervening in a way to help someone reduce their symptoms. Zeller stressed the need to listen to patients and ask, “how can we help,” even when “it might be a little more difficult to understand” a person (Continued on page 4)
Peer Operated Projects Leading the Way to Better Support Vermont Psychiatric Survivors funds several Peer Operated Projects (POP) throughout the state. The highlights of the activities of these POP projects are described in this article, with a special focus this time on Rene Rose from the Northeast Kingdom.
Art is Our Sanctuary Eryn Sheehan and Kara Greenblott, coordinate Art is our Sanctuary, a POP project throughout the greater Burlington area. With funding from VPS, the Arts Collective put on several exhibitions this year, featuring the art of more than 20 artists. Summary of Activities: Members of the Arts Collective created new artwork for the Arts So Wonderful Gallery, in the University Mall,
Mental Health Peer Engagement
for the months of April and May. Nearly all of the artists attended the reception, and there was a live jazz band courtesy of the gallery. There were approximately 75 people in attendance at the reception, and the gallery was open to the public four days per week during the two-monthlong exhibition. The artwork of three different artists was sold at this show, one of which was a first-time sale for the artist, and she was thrilled! The VPS grant paid for art supplies for the two Arts Collective studios at which many of the artists made their art during Open Studio. In addition to art supplies, the VPS grant funded the purchase of
6 The Arts11
Artwork by Stephen Tall frames, wire, and other hardware for hanging the artwork in the gallery. (Continued on page 5)
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Integration Council
2 Peer Leadership and Advocacy
Fall 2021
Meeting Dates and Membership Information for Boards, Committees and Conferences Peer Organizations 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.
State Committees ADULT PROGRAM STANDING COMMITTEE
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, noon-3 p.m. Check DMH website www.mentalhealth.vermont.gov or call-in number. For further information, contact member Daniel Towle (dantowle@comcast.net) or the DMH quality team at Eva.Dayon@vermont.gov.
LOCAL PROGRAM STANDING COMMITTEES
Advisory groups, required for every community mental health center. For membership or participation, contact your local agency for information.
Advocacy Organizations 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.
ADULT PROTECTIVE SERVICES
Reporting of abuse, neglect or exploitation of vulnerable adults, 800-564-1612; also to report violations at hospitals/nursing homes.
PEER WORKFORCE DEVELOPMENT INITIATIVE
Webpage provides an up-to-date account of statewide peer training and registration information as well as updates about its progress and efforts. www.pathwaysvermont. org/what-we-do/statewide-peer-workforce-resources/
NAMI-VT
VERMONT CENTER FOR INDEPENDENT LIVING
Family and peer support services, 802-876-7949 x101 or 800-639-6480; 600 Blair Park Road, Suite 301, Williston VT 05495; www.namitvt.org; info@namivt.org
HEALTH CARE ADVOCATE To report problems with any health insurance or Medicaid/Medicare issues in Vermont 800-917-7787 or 802-241-1102.
MadFreedom is a human and civil rights membership organization whose mission is to secure political power to end discrimination and oppression of people based on perceived mental state. See more at madfreedom.org
Peer services and advocacy for persons with disabilities. 800-639-1522.
VERMONT CLIENT ASSISTANCE PROGRAM
Rights when dealing with service organizations such as Vocational Rehabilitation. Box 1367, Burlington VT 05402; 800-747-5022.
MADFREEDOM
MENTAL HEALTH LAW PROJECT
Representation for rights when facing commitment to a psychiatric hospital. 802-241-3222.
Hospital Advisory VERMONT PSYCHIATRIC CARE HOSPITAL
RUTLAND REGIONAL MEDICAL CENTER
BRATTLEBORO RETREAT
UNIVERSITY OF VERMONT MEDICAL CENTER
Advisory Steering Committee, Berlin, check DMH website for dates at www.mentalhealth.vermont.gov
Consumer Advisory Council, fourth Tuesdays, 12-1:30 p.m., contact Director of Patient Advocacy and Consumer Affairs at 802-258-6118 for meeting information.
Community Advisory Committee, fourth Mondays, noon, call 802-747-6295 or email lcathcart@rrmc.org. Program Quality Committee, third Tuesdays, 9-10 a.m., for information call 802-847-4560.
Conferences ALTERNATIVES
The National Coalition for Mental Health Recovery is hosting the (free!) 2021 (Virtual) Alternatives Conference on July 8, 10, 15 and 17. The theme is “Connecting, Organizing, Activating!” In addition to workshops, the conference will invite attendees to join action groups to develop strategic plans. To register go to www.alternatives.org/our-mission For contact info@ncmhr.org
NATIONAL RIGHTS PROTECTION
The National Association for Rights Protection and Advocacy’s 2021 conference, to be presented
this fall, will offer six free, 90-minute webinars. Look for updates at www.narpa.org, or contact NARPA at narpa4rights@gmail.com or 256.650.6311.
WORLD HEARING VOICES
The 12th World Hearing Voices Congress, whose theme is “Solidarity in Times of Adversity: The Global Voice Hearing Community Reconnecting,” will be held September 1-3. If restrictions do not allow to have a hybrid Congress in Cork, then Congress will move fully online. For more information go to hearingvoicesnetworkireland.ie/intervoicecongress-2021/
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 2021, All Rights Reserved FOUNDING EDITOR Robert Crosby Loomis (1943-1994) EDITORIAL BOARD Joanne Desany, Kara Greenblott, Emma Harrigan, Zach Hughes, Calvin Moen, Sara Neller, Patricia Singer, Dan Towle 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. 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.
Department of Mental Health 802-241-0090 www.mentalhealth.vermont.gov For DMH meetings, go to web site and choose “more” at the bottom of the “Upcoming Events” column. ADDRESS: 280 State Drive NOB 2 North Waterbury, VT 05671-2010
Don’t Miss Out on a Counterpoint! Mail delivery straight to your home — be the first to get it, never miss an issue. 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
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NEWS .
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Agency Executive Directors Find Peer Support In this issue of Counterpoint, we take a look at a peer support group that began in 2017 when the executive directors of four peer-run organizations in Vermont decided to meet up at a Thai restaurant in Randolph, Vermont, for lunch. In the next few hours, they experienced all the benefits that only peer support can provide: the relief of no longer feeling alone, mutual learning, non-judgmental expression and reception, invaluable advice, and much more. The founders Gloria Van Den Berg (Alyssum Vermont), Wilda White (Vermont Psychiatric Survivors), Eli Martin (Another Way Vermont), and Hilary Melton (Pathways Vermont) continued to meet, and the tradition has carried on throughout the Covid-19 Pandemic (virtually), even enduring life and leadership transitions. The new group members Karim Chapman (Vermont Psychiatric Survivors), Ken Russell (Another Way), Gloria, and Hilary meet once per month and continue to provide peer support to each other.
The founders. From left to right: Wilda L White, Hilary Melton, Eli Martin, and Gloria Van Den Berg.
About the Agencies: Each director has provided a summary of their organization below. The group has come to rely on their combined expertise and solid networking skills to tackle minor issues, and one larger project is in the works. In April 2019, the group collaborated with Wilda L. White (Founder and Principal of MadFreedom) to create a white paper titled: Creating a Network of Peer Run Community Centers and Two Bed Peer Respites: Narrowing the Gap in Recovery-Oriented Community Services. White presented an analysis of the risks and challenges of Vermont’s planned investment in additional inpatient psychiatric beds. White made recommendations based on the analysis of how to mitigate the risks, address the challenges, and realize Vermont’s goal of a “recovery-oriented” system of mental health care. The group is perhaps most grateful for the mutual peer support and camaraderie over the years that helped the group get to the point of influencing legislation through this contract with Ms. White. The group wants peers and survivors to know that their top priority is the betterment of the systems of care in Vermont, and their organizations work hard to that end. Feel free to reach out to them any time.
The original Fab Four. From left to right: Wilda L White, Hilary Melton, Eli Martin, and Gloria Van Den Berg.
Peer run agency Executive Directors (current) Hilary Melton, Ken Russell, Karim Chapman, and Gloria Van Den Berg.
Alyssum Vermont
Pathways Vermont
Alyssum provides a two-bed peer-run, short-term, mental health alternative to hospitalization in a trauma-informed program which supports individuals to emerge from a crisis with wisdom, a new perspective, and the personal responsibility skills for living well. Alyssum is home-like and provides a calming and comfortable environment where people feel safe sharing and connecting with others. Guests are encouraged to focus on self-determined goals and to decide for themselves how they would like to work on these goals. Guests create their own healing program with support and guidance from staff throughout this process. Alyssum’s staff have all experienced personal mental health challenges and bring their learned experience, wellness tools, and other resources to support guests as equals. Staff members are awake and available 24/7, often with a 1:1 staff-to-guest ratio. Staff practice being non-judgmental and curious and have been trained in Intentional Peer Support, Wellness Recovery Action Planning, Non-Violent Communication, and traumainformed supports.
Pathways Vermont is the first and largest Housing First organization in Vermont, providing permanent housing without requirements or barriers. This evidence-based model has been proven to be the most successful approach to ending and preventing homelessness. Through their Housing First programs, Pathways serves people struggling with mental health and substance abuse issues, as well as veterans, families, and people coming out of correctional facilities and other institutions. Pathways Vermont uses a peer-supported alternative approach to mental health in which individuals with lived experience of mental health challenges guide and aid those experiencing similar challenges. From their Community Center that provides peer support in a friendly setting, to the Soteria House, which supports people experiencing mental health crises for the first time, to our seven days/week, non-judgmental phone Support Line, their programs have an immeasurable impact on the everyday lives of our neighbors in need.
Vermont Psychiatric Survivors Another Way Community Center Founded in 1984 in Montpelier, Vermont, Another Way Community Center provides a safe and friendly place to share community, network, and learn from one another. Another Way welcomes everyone, especially persons seeking to overcome struggles and live well. Another Way grew out of the psychiatric survivor movement to counter oppressive systems of control, and it continues to advocate for freedom and self-determination of care. Another Way plays an active role in advocating for our community’s most vulnerable individuals and is a beacon of hope and renewal for psychiatric survivors and the broader community.
Vermont Psychiatric Survivors (VPS) is an independent, statewide mutual support and civil rights advocacy organization run by and for psychiatric survivors, founded in 1983. Its mission is to provide advocacy and mutual support that seeks to end psychiatric coercion, oppression and discrimination. VPS offers mutual support, publishes a quarterly newspaper distributed throughout Vermont, offers patient representation in Vermont psychiatric hospitals and residential facilities, sponsors peer-led support groups, advocates and educates to challenge discrimination, and offers technical assistance to allied organizations. This year, VPS will expand existing programs and develop new outreach and community services initiatives aligned with pandemic recovery and stabilization.
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IMPROVING • Continued from page 1
who is unable to express themselves clearly. Patients should not be prejudged or told what to do, he added. He argued strongly against using restraints, including involuntary forced drugs, and said there needed to be more focus on avoiding coercion. The history of ER response has been for the first reaction to “lock people into psychiatric
Zeller stressed the need to listen to patients and ask, “how can we help,” even when “it might be a little more difficult to understand” a person who is unable to express themselves clearly. units” when much less restrictive options could help someone. He urged that hospitals take a traumainformed approach to “avoid things that would retrigger” the trauma already experienced by most people with mental health symptoms. Zeller added that psychiatric emergencies need to stop being put “at the back of the line” when patients are triaged. That reflects “disdain for what people are suffering,” he said. “What if you wanted to die this minute – what that must feel like,” or you hear voices directing you to hurt someone; “how agonizing is that?” He urged doctors to understand mental pain in the same way they understand physical pain: “think of the worst headache in your life.” Zeller opined that treatment should start in an ER rather than simply holding people for days using sitters and, often, restraints, including drugs. He said there are medications for addressing anxiety or other symptoms that help “chilling people down instead of knocking them out” and enable providers to engage with them. By the time the transfer is arranged for someone who was screened as needing hospitalization, the person “may be doing so much better [they] may be able to go home,” he added. All of those goals can be achieved with the EmPath model, Zeller said, by creating a calming, healing environment in a separate
area where those in a mental health crisis can move to after a quick review to ensure there is no medical cause for the symptoms. He said that no one should be excluded; even people with “super high acuity” will respond when you “take away all the things that get people angry or upset.” There is a voluntary calming room rather than seclusion, and in Empath units, there is a restraint rate of only one per one thousand patients, he added. The Empath unit features a large open area for shared support, chairs that can open up for sleeping rather than beds, and “no fishbowl” for nursing staff, who instead mingle directly with patients in the open environment, Zeller explained. That also means that the cold feeling of a “ligature free” space can be avoided because regulators accept that the risk of self-harm is addressed when staff are constantly present, Zeller told the audience. The use of EmPath units has shown up to a 75% reduction in the number of patients who would have been hospitalized because “people are having their needs met more quickly,” he said – and 75% stay less than 24 hours. Although used at hospitals of many different sizes with different types of space, “it’s the philosophy, not the particular size of shape” that makes the difference, he told the group. The model helps children, although they have different needs that must be addressed in a dedicated space, Zeller added. “They’re still kids,” he said, and a lot can be done with the environment, including a “Kids Kit” for activities and distraction and fewer institutional features. In responding to questions at the end, Zeller touched on several subjects specific to Vermont. When one hospital representative raised the question of patients who are on a “psych hold” and refuse even medical tests that are necessary, Zeller responded that he had “strong feelings about that” – that “patients have a right to treatment that can exceed their right to refuse treatment” when it is deemed a life-threatening condition. “We can’t get too hung up on, ‘well, is this legal or not?’” when it is an issue of saving lives, he said, drawing a parallel to giving Narcan without the consent of a person who has overdosed. He said the legal standards were different in an emergency room from on inpatient units. That brought a response from Jack McCullough of the Mental Health Law Project, who argued that forced medication “is a big, big deal.” “I agree,” Zeller replied. “It’s an assault” and
should not happen unless a person is “so sick, so acute” that it is necessary. He said the goal must be to “make that number as tiny as possible.” Other hospital representatives raised concerns that the small size of many Vermont hospitals meant they didn’t have the resources to create a unit like what Zeller described; they did not even have access to on-call psychiatry except by telehealth doctors who only do screening. “We need a centralized psychiatric ED,” one suggested. Zeller responded that many EmPath units became centralized response facilities serving more than one hospital; one in California takes referrals from 11 hospitals. Even without that, small hospitals can still implement some of the features and philosophy of the approach, he added. Psychiatrists who provide consultation need to take ownership for initial care and say, “here is a treatment plan” and “here is what you should be looking for” while the patient is in the ER, not just say “yes or no” to the need for hospital admission, he said. “That always breaks my heart” when he hears about such dismissive consulting physicians, he added. “We didn’t go to medical school to make people suffer. We went to medical school to make people better.” In a near-final question, workforce availability for new EmPath units was raised, and Zeller
“I love to have peer support specialists,” Zeller said. “They are so amazing. They’re 10 times their worth in gold.” responded by saying that having versatile nursing staff on-site in a hospital helped with that issue. He went on to add that EmPath units were an ideal setting for support from peer workers. “I love to have peer support specialists,” Zeller said. “They are so amazing. They’re 10 times their worth in gold.” “I have yet to hear of people saying they wish they didn’t have peers. Quite the opposite. It’s like, ‘Why can’t we have three more?’”
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PEER OPERATED PROJECTS • Continued from page 1 As was the case during the previous quarter, art supplies were also purchased and distributed directly to artist-members at their homes. The pandemic has made it difficult for many artists to attend the open studio. Even though many of our artists have now been vaccinated, there is still some hesitancy among some of them to attend an in-person open studio. The Art So Wonderful show was taken down at the end of May, with and exhibition at the Flynndog Gallery on Flynn Ave in Burlington (July and August) and quarterly rotation of the exhibitions at the Howard Center’s waiting room and main conference room at 208 and 300 Flynn Avenue. The Flynndog show is a memorial to a former (continued on page 4) Arts Collective member named Christine Pemberton, who passed in January of 2020. Summary of Feedback from Participants: While art supply purchases were very much appreciated, particularly the customized orders for each artist, our members articulated the desire to work together on an art project in the community. We, therefore, used our weekly Community Calls (on Zoom) to begin brainstorming on two public art installations that would be created by our Collective and allow the artists to work together as a community. Since the pandemic, we have not been able to be together in person since the onset of the pandemic, and our artists have expressed that they crave being involved in some kind of creative project as a community. The first of these projects is a mural project, which is now underway on the doors and walls of a local Burlington business, Brian’s North End Automotive, with seasonal scenes from Burlington featured across the space. Secondly, we are also brainstorming on developing a public art installation on the theme of Connections. Thus far, the idea is to collect used mailboxes from the community, have our artists paint them, each in their style, and then erect them in a 3-D installation on Flynn Avenue, in front of the Howard Center administrative offices where clients come go for appointments and checks. The American postal system is as old as our nation and was the first form of connecting people and communities as the country grew geographically. Today, with the advent of the Internet, ways of connecting have changed dramatically, but the need to connect with our communities remains as important as ever. We have received a second grant from VPS, which will help fund the first of these two projects.
Hot Topix Greg Burda, in Bennington, runs a Support Group, Hot Topix, often in coordination with Annette Denio (see the following summary). This group meets weekly and also helps with Annette’s group. Greg continues to do a great job and reports the members always engage in conversation over various topics.
Sunshine Social Club Organized and run by Annette Denio, the Sunshine Social Club is one of the best-attended and active Support Groups in Bennington. Summary of Activities: As things have changed, yet again, I am continuing to do a daily activity in house plus a porch visit once a week, with games, socialization, how are you doing, etc. Phone calls can still be made to me for supports, prizes, and crafts are brought once a week. Craft box is kept full, with new puzzles to
the puzzle shelf. Activity books and appropriate reading books. Snacks are individually wrapped and healthy. I find now that some restrictions have been lifted; it is a reverse effort to get peers out of the house as they have been house bound for over a year. Some have fears of going out, some still fear COVID. There is one person who became very involved in group last year. She would not even go to the CRT social club but when we came to Washington Elms, she lessened her fear and smiling, joined us. When I go, we do a game on the porch, and I have many lawn games I am working to get them onto the lawn to enjoy going out again. We will plan a cookout when things settle. I can continue to say I love helping my peers. The Facebook is still being set up there. I do like the ability to do seminars, etc on Facebook. What a blessing.
WRAP Facilitation Rene Rose and Gladys Konstantin are WRAP facilitators and run WRAP groups throughout the year, supported by a VPS POP grant. Rene is our featured guest in this issue of Counterpoint. The following are key points of how WRAP can help folks develop plans to help them move forward. Rene and Gladys report: We conducted Post Assessments with Participants on selected factors of : 1. Attitudes, (We choose Hope) 2. Knowledge (Triggers and Early Warning Signs) and 3. Skills (creating recovery-oriented crisis and post crisis plans and social support. Participants were asked to rate their attitude of Hope for their recovery and future. At the beginning of the group, the average score was 4 out of ten. At groups end, the average score
was 7. Participants were asked to rate their knowledge and use of knowledge of Triggers and Early Warning signs. At the groups beginning, the average score was about 3 and by post group 5.5. Participants rated their use of wellness tools, crisis and post crisis plans and the cultivation and use of social support. At the groups beginning, the average rating was 3.5, by groups end 6.5 During this last month, emphasis was put on WRAP Key Concepts. Participants were asked pre-group to rate their knowledge of Education, Self-Advocacy, Personal Responsibility, Hope and Social Support. The participants offered many real-life experiences and often the group problem solved together or in small groups. Summary of Feedback from Participants: ALL of the participants were eager to sign up for the next group! The social connections were really appreciated and used. Participants started to use some of the tools (e.g. Learning about triggers and creating a trigger action plan) (It’s generally a big step from learning the tools and the daily active use of them.) VPS is proud to fund the brilliant work being done by these folks who run support groups and peer operated projects. There are new projects just starting up and we will report on those later this year. VPS also has available new funding this year for these types of projects and applications are being accepted. Find the application online at https://www.vermontpsychiatricsurvivors. org/peer-operated-projects-1 or if you need an application sent to you, leave us a voice mail message at (800) 475-4907, Extension 5, with your name and complete address.
WRAP Facilitator, Rene Rose Born in Brooklyn, Rene Rose made her way to Vermont in 1978 to join a spiritual community. Despite having a formal education focused on social justice and women’s studies, she quickly learned how to farm and milk cows. . She landed a job at Waterbury State hospital in the '80s and then onto Washington County Mental Health. In 1994, Rene migrated to Northeast Kingdom Human Services and held various positions there as Employment Coordinator, Program Manager for St Johnsbury CRT, Emergency Services, and now Peer Services Coordinator. In 2014, Rene took a different path and attended WRAP training. Eventually, she trained as a WRAP Facilitator and helped to create a Peer Cadre Team to assist traditional emergency workers. COVID has since put many activities of the Peer Cadre Team on hold.
Counterpoint: How do you describe Peer Support? Rene: Peer support is a person with lived experience that understands what people are going through and what to expect or how to navigate within the processes. I believe that it starts with understanding and being able to share your story as an identifiable method. ( People who have lived experience don't operate in a space of traditional questions
but from a place of treating people as humans and understanding.)
Counterpoint: You mentioned the term VIN diagram. What does that mean? Rene: Yes, the VIN diagram explains the working relationship between traditional and non- traditional staff (Peers). Sometimes there's a fear of not knowing how to help someone that doesn't require your usual work scope. The VIN diagram connects both professions in a way that puts everyone on the same page of understanding and support from their perspective. After 26 years we are now turning into an organization that practices this well and will only grow. (Continued on page 9)
NEWS 6 NEWS
Fall 2021
New Mental Health Peer Engagement by ANNE DONAHUE BURLINGTON – Chris Nial is so excited about the prospects for new mental health peer engagement based at the Pathways Community Center, his words spill out almost faster than a reporter can take them down. With relief from the pandemic coming into focus, Nial described a vision of the Center as offering mutual support that is “moving towards something, not just catching [people] when they fall and sending them back into the world.” His excitement was palpable as he talked about shifting from a dropin center to an “intentional space with peer support” that engages and connects with people. Nial is the Center’s new Peer Support Services Team Lead and catapulted into the area of intentional peer support after receiving that level of support in his own life. Nial survived a manic crisis that would have usually landed someone in a hospital, he said. That completely shifted his work from directing an afterschool program to working with peers who have experienced mental health distress, first at Soteria House – a peer-run intensive recovery residence – and now at the Center. Pathways is a peer-directed agency that runs the Vermont Support Line, Soteria House, the Housing First program, the Peer Workforce Development Initiative, and the Center. Nial has already begun Friday “socials in the park” to help get people back together again. He has already heard “what the center meant to folks before the pandemic.” The Center’s mandate is broad, Nial explained: bringing peer support services to Chittenden County. That means a great deal of freedom in meeting needs, and “the only agenda is connection through hearing what their needs may be.” The Center recently purchased a mini-van to enable trips outside Burlington and has begun restaffing after being closed during the pandemic. New facilitator training is underway, and the Center is running some ten groups – still on Zoom for now –as diverse as a hearing voice group and laughter yoga. One-on-one in-person peer support is also beginning, Nial added. The Center also connects peers to employment support through PAVE: peer-assisted vocational exploration. He described looking forward to re-establishing events like open
mike night and art shows and perhaps showing movies that can spark community discussions. Nial added that he envisioned using the center “in as much a collaborative way” as possible, opening the space on Winooski Avenue to peers who want to host events. Nial said he has been reaching
medications to recover from the sleep prescriptions and the “trial and error [that happens] under the guise of science,” he explained. During this time, he began to connect with others in the peer support movement in Vermont. He became a peer group facilitator for NAMI-VT and started reading and learning from Mad in America
His excitement was palpable as he talked about shifting from a drop-in center to an “intentional space with peer support” that engages and connects with people. out to connect with other agencies to know what resources they can offer and is constantly raising the questions: “Where are the gaps you’re seeing? How can we fill that? What does our community want and need?” After all, he added, “If we’re not doing that, then what are we here for?” One thing Nial does know: why he is here. He explained that his graduate degree at the University of Vermont in higher education student affairs led to directing an afternoon program. Still, after attending an intense out-of-state conference with several nights without sleep, he began to feel his brain spiral out of control. That drove to more sleeplessness and exacerbation of symptoms. He was on his way to the hospital but was met in the parking lot by his father – a trained IPS facilitator who was at the hospital at the time on his regular rounds doing pet therapy. Ward Nial is a well-known advocate who has himself gone through traumatic hospitalizations, and he took his son home with him, staying by his side and awake for 72 hours, “teaching me about my brain,” his son said. Nial described a series of barriers to getting the help he needed to be able to sleep again. First Call, the Howard Center’s crisis team, referred him to a health center with a walk-in psychiatrist, but it turned out that walk-in appointments were only for existing clients; it would take three weeks to get an appointment. His regular therapist told him to go to the hospital. Finally, a local community health center “broke protocol” to allow him to take an appointment from a no-show client, and that got him the sleep medication he needed to break the cycle. However, that did lead to recommendations for new
publications, he said. Nial found Pathways, where he joined the harm reduction group that supports people who want to reduce or discontinue the use of psychiatric drugs. He explained that he was able to taper off the medications slowly. Now he occasionally uses medication “as a tool” when needed, but “it is something in my hands, my control,” he explained. At Pathways, he took Intentional Peer Support training and now leads the ongoing co-reflection groups and the same drug reduction group that had helped him a short time earlier, he said. He also got a job at Soteria House. It was “humbling to be there” knowing that he had almost been a resident there – his father had looked into a referral during his manic episode, he explained. It drove home the fact that staff and residents are “humans working together and experiencing together” in a peer-run residence. Although the mental health system, with nothing to offer but
Chris Nial, Peer Support Services Lead the emergency room or a 3-week wait for help, pushed him towards hospitalization, Intentional Peer Support meant it “ended up being an answer not needed.” However, it gave him the direct experience of living through the panic of potentially “being forced into a hospital” and the resulting trauma, he noted – events he has seen happen to others. Nial reflected that a better alternative got him through a crisis because of resources that many others do not have, beginning with a father with both IPS training and lived experience and including his partner and friends’ “invaluable” help. It was “a lot of power and privilege” involved in having access to those supports, which many peers don’t have, which “I try to acknowledge and hold.” That now helps drive his passion to make peer support available to others who are struggling to find what they need to make it through.
NEWS . NEWS
Fall 2021
7
New Guidance from WHO on Rights-based Care The World Health Organization released new guidance that endorses a recognizes the essential role of mental health in achieving health for all human-rights-based approach to mental health services in June. people and was extended to 2030 at the Seventy-second World Health The document was presented in an international webinar and features Assembly in 2019.” The US is a member of the assembly. 25 programs worldwide that it says exemplify practices that represent The guidance asserts that although some countries have taken key steps “person-centered, recovery and rights-based approaches.” to move to community-based services, it has not led to improvement in The one United States program profiled is a peer-run respite center, Afiya care because “the predominant focus of care in many contexts continues House in Holyoke, Massachusetts. Its stated aim is to “support people in to be on diagnosis, medication and symptom reduction.” distress to turn a ‘crisis’ into a learning and growth opportunity.” The Action Plan states that “Critical social determinants that impact Afiya House is part of a broader community of people working within a on people’s mental health such as violence, discrimination, poverty, peer services framework operated by the Wildflower Alliance – formerly exclusion, isolation, job insecurity or unemployment, lack of access to Western Mass Learning Community – which has existed since 2007. housing, social safety nets, and health services, are often overlooked or The World Hearing Voices Network is also listed in the guidance. This excluded from mental health concepts and practice.” organization has branches in the US, but none in Vermont. “This leads to an over-diagnosis of human distress and over-reliance One of the seven technical packages released with the guidance provides on psychotropic drugs to the detriment of psychosocial interventions specific information for setting up new peer support mental health [and] creates a situation where a person’s mental health is predominantly services. addressed within health systems, without sufficient interface with the Person-centered, holistic care requires a fundamental change away necessary social services and structures...” from the deeply entrenched biomedical model, said Michelle Funk, MD, “In addition, the stigmatizing attitudes and mindsets that exist among the WHO director for policy, rights, the general population, policy and the law. makers and others concerning There is a “dire need for change” people with psychosocial disabilities and to recognize the right of people and mental health conditions – for to make their own decisions about example, that they are at risk of • M any people with mental health conditions and psychosocial care, she said. harming themselves or others, or disabilities face poor quality care and violations of their “Good practices exist. They are that they need medical treatment human rights, which demands profound changes in mental possible,” Funk added. to keep them safe – also leads to health systems and service delivery. A shift is occurring within an over-emphasis on biomedical medicine to recognize the treatment options and a general • In many parts of the world examples exist of good practice, importance of the whole person acceptance of coercive practices community-based mental health services that are personin addressing health, said Gerard such as involuntary admission centred, recovery-oriented and adhere to human rights Quinn, the UN Special Rapporteur and treatment or seclusion and standards. on the rights of persons with restraint,” it concludes. disabilities. A fundamental shift is required • In many cases these good practice, community-based Quinn explained that a “process to move towards “more balanced, mental health services show lower costs of service provision of maturation within the medical person-centered, holistic, and than comparable mainstream services. community” is beginning to look at recovery-oriented practices that • Significant changes in the social sector are required to the “ecosystem of the person.” consider people in the context of support access to education, employment, housing and Health systems need to be “retheir whole lives, respecting their social benefits for people with mental health conditions and imagining community engagement will and preferences in treatment, psychosocial disabilities. as fundamental to health,” he implementing alternatives to suggested. coercion, and promoting people’s • It is essential to scale up networks of integrated, communityHe added that there must be a right to participation and based mental health services to accomplish the changes new framing that mental health community inclusion.” required by the CRPD. services should not look to what The guidance added that systems limits can be placed on rights, but “need to find ways to support people • The recommendations and concrete action steps in this rather, how to give life to human without resorting to coercion, guidance provide a clear roadmap for countries to achieve rights and build autonomy. and ensure that people with lived these aims. Norman Lamb, a former health experience participate and provide minister in England, said it needed insights into what a good service © World Health Organization 2021 to be “a global human rights should look like.” priority” to end coercive treatment. “Finally, mental health services Too much of mental health budgets are spent on “containment of people,” should also draw on the expertise and experience of peer workers to and this often adds to disparities. He pointed to the United Kingdom, support others in their recovery journey in a way that meets their needs, where he said those who were young and Black were much more likely to wishes, and expectations.” be detained under its involuntary hold laws. Among the specific technical documents are those addressing changes When mental health is “medicalized,” it doesn’t address underlying needed in the law, financing, and workforce development. social factors, he said. Changes in legal systems need to ensure “the rights of persons with He argued that “getting people what they want and need” had to become mental health conditions and psychosocial disabilities are realized on an the priority. equal basis with others, including the right to equal recognition before The guidance is intended to help countries “develop or transform their the law and to legal capacity, to informed consent, to hold or withhold mental health system and services to align with international human information in medical records, the right to confidentiality, access to rights standards including the UN Convention on the Rights of Persons justice, to access support in making decisions...” with Disabilities,” the document says. Laws must “require that admission and treatment are always based The United States, South Sudan, and Somalia are the only UN countries on the free and informed consent of people using services, including that have not ratified that document, which was first adopted in 2007. A medication; require support and accommodations, including supported total of 193 countries are parties to it. decision-making, safe spaces of respite and deescalation strategies, during “This guidance aims to empower governments, policy-makers, crisis or emergencies; [and] set out procedures in law and regulations for health and social care professionals, nongovernmental organizations, determining people’s will and preference or best interpretation of will and organizations of persons with disabilities and other stakeholders, to preferences if the person is not able to communicate them.” introduce and scale up mental health services that protect and promote The guidance asserted that financing affects appropriate care human rights, ultimately improving the lives of people with mental health because “insurance drives a need for diagnosis and favors simple and conditions and psychosocial disabilities everywhere,” the document discrete interventions (such as medications) rather than more complex introduction states. interventions that may be beneficial.” It notes that “In 2013 the World Health Assembly endorsed the “This has the effect of limiting treatment options and choice,” it said, Comprehensive Mental Health Action Plan 2013–2020... This action plan and when financing is “not aligned with the evidence,” it “reinforce bad
Key messages of this guidance
(Continued on page 8)
8 NEWS
Fall 2021
Alternatives, Self-advocacy Against Stigma Self-advocacy is a key to how individuals can fight the stigma that faces us when we carry labels and are subject to discrimination based upon our mental disabilities, a presenter said in an Alternatives workshop titled, “Changing Hearts, Changing Minds: Teaching Others to Treat Us Right.” Robyn Gantsweg said that our self-stigma is often a barrier, and we need to have the “internal belief that we are worth fighting for and advocating for.” She added that assertiveness is a skill to develop and translates simply to “asking for what you need and want.” Gantsweg acknowledged that it could often be discouraging but said it is possible for all of us to develop that skill and to remember that “we have one another; that’s the power of peers.” Implicit bias creates the use of force in the mental health system instead of using cooperation and collaboration, which are proven to bring better outcomes, she said. Stigma, when acted upon, becomes the discrimination that excludes us from decision-making and takes away our autonomy, she explained. This stigma develops because of the multiple biases that label people with mental disabilities as being everything from incapable of caring for themselves or knowing what is best for themselves to be unpredictable and dangerous, Gantsweg told the audience. In her presentation, Gantsweg identified a series of strategies for building self-advocacy tools. They included:
• • •
• • •
Encouraging others to explore their own beliefs and implicit biases; Asking for information in plain language; Asking for one’s choice self-identity to be respected. While this is often person-first (using language that treats diagnoses as secondary, such as “a person with a bipolar diagnosis”), some people may want their identity of disability to be primary; Asking others to listen and hear you and to ask about your feelings; Asking others to offer empathy without telling you what to do; Asking others to work to understand the negative power of labeling and of applying diagnoses.
Gantsweg is the outreach coordinator and peer advocate for peer networks in California for Disability Rights California.
NEW GUIDANCE FROM WHO • Continued from page 7 practices and limit the choices of other evidencebased interventions.” It cited a rights-based practice in Belgium where there was a challenge in reducing psychiatric hospital beds because most hospitals were private, non-profits, and the loss of revenues might force their closure. One of the key objectives for reform was the creation of mobile teams to provide care to people in their home environment. To achieve the change, Belgium used financial incentives to encourage hospitals, voluntarily, to make the required shift to reduce beds and increase community services and fully funded the beds that were to be closed. The fact that beds were closed – without any loss of funds – freed up the time of the available clinical staff so that they could serve on the mobile teams that were being established. The government also provided additional financial resources to allow the sufficient recruitment of staff for the mobile teams. In addition to the outreach teams, the same mechanism of financial incentives also strengthened other aspects of hospital services, particularly the crisis response services. Among the other examples the guidance gives for using budgets to reshape services are: - Reimbursements for social prescribing (to
enable general practitioners, nurses, and other health and care professionals to refer people to a range of local, non-clinical supports in the community); - Elimination of financial incentives for interventions and treatments which are not evidence-based or compliant with international human rights standards and introduce incentives for evidence-based community-based mental health services; - Prioritize best-practice, community-based mental health services that operate on the principles of recovery, legal capacity, community inclusion, and freedom from coercion as an alternative to or an over-reliance on specialist care. Under training and workforce development, the WHO guidance said that “significant changes to the attitudes, knowledge, competencies, and skills of service providers in health and social care services” are required. It cites “negative assumptions and false beliefs held by health professionals and service providers (as well as policy makers and the community at large) about people with mental health conditions and psychosocial disabilities” that “need to be overcome to address stigma and discrimination in the health care context.” It went on, “Educational and training
initiatives which introduce a more balanced, person-centered and recovery-based approach – as opposed to solely focusing on a biomedical model – are central to achieving transformative change.” “Such initiatives would have the added potential benefit of reducing fear and stigma and the belief that people with mental health conditions or psychosocial disabilities are potentially (or actually) dangerous.” The guidance asserted that “Human rights education is rarely provided to service providers within the health and social sectors, but is much needed given that service providers can (and do) restrict rights. Health care professionals need to be trained on human rights-based approaches that address the intersecting forms of discrimination that affect persons with mental health conditions and psychosocial disabilities.” “While focused, intensive training is needed to change attitudes and practices, any meaningful and sustainable change in the field of mental health can only happen if mindsets and practices of staff are changed on a wide scale,” it concludes. “Sporadic training events, even if intensive, often reach limited numbers of people and because of this are not able to change the status quo that exists within the community at large.”
Have News To Share? Send it to Counterpoint! The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 or by email to: counterpoint@vermontpsychiatricsurvivors.org
Deadlines:
FALL (September delivery; submission deadline July 29) SUMMER (December delivery; submission deadline October 30) SUMMER (June delivery; submission deadline April 7)
NEWS .
Fall 2021
9
Police Encounters of the Positive Kind ST. JOHNSBURY – Nicole Rivet has some clear advice for how the police can respond in ways that help calm someone instead of making a situation worse. “Watch your body language. “Build rapport. “Listen. “Believe them.” She could be taking her suggestions straight from clips from the video “Ernie & Joe” that features the work of two police officers intervening with mental health calls that is now being shown in community discussion settings around the state. But she is talking about her own experiences with Vermont state troopers who work from the local barracks and interact with her frequently and positively. She said she agreed to share her story with Counterpoint to demonstrate positive encounters, in contrast to the frequent negative news stories about police officers. Rivet explained that her challenges began about five years ago when a devastating brain injury left her frequently confused or wandering away. With her combination diagnosis of complex PTSD, she often harmed herself with cutting, overdoses, or suicide attempts, such as jumping off a bridge. She has been “in and out of psych wards and residential programs” as a result, she explained. The police response has always been “very, very caring,” she said. At various times, they have taken her to the hospital or gotten mental health services to the scene for evaluation if needed, or sometimes, “just talk me down.” Rivet said she has become known enough that the police have a plan for responding to her and do simple things to accommodate her disabilities. Knowing, for example, that her TBI sometimes causes her to forget names or faces, officers will start by identifying themselves, saying, “Hey, Nicole, it’s officer so-and-so.” They’ve also sometimes called her or taken her out for a meal.
ROSE • Continued from page 5 Counterpoint: What does the Cadre Team do? Rene: The Cadre Team is our Emergency 24/7 Support Team that's on call to support individuals while they wait for a bed or to be assessed at hospital, which sometimes can take hours even days. During this time, we're able to talk with individuals and help them better understand the process and sometimes just sit with them and be present at a time that can be very scary and uncomfortable.
Counterpoint: WOW! That sounds amazing Rene: We have an embedded Peer Team in the agency which is a little different than other organizations. I must say, we have a great team that has been WRAP trained. When people walk away from this training you can almost see how different people are, even the so-called traditional staff.
Directed and produced by Jenifer McShane (Mothers of Bedford), Ernie & Joe: Crisis Cops follows San Antonio, Texas police officers Ernie Stevens and Joe Smarro and their daily encounters with people in crisis. The film documents how their innovative approach to policing – which takes mental health into account – is having a dramatic effect on the way police respond to these challenges.
She agreed to share her story with Counterpoint to demonstrate positive encounters, in contrast to the frequent negative news stories about police officers. “They say they want to be proactive instead of reactive.” Rivet gave an example of what “believe them” means when talking to someone experiencing a crisis. She has flashbacks, particularly from severe trauma she experienced at a residential home in Florida. She sometimes experiences delusions
Counterpoint: How did the POP Grant from VPS help support your efforts? Rene: When COVID started, the VPS grant allowed us to do community groups and we were able to have a group in person. The POP grant money helped us purchase tablets to conduct groups online. It was a life saver!
Counterpoint: Was that difficult to do? Rene: We were able to adapt. I'll tell you people couldn't wait to get back in person but loved the option to be able to learn in this way. The POP grant also allowed us to do more outreach to explain what the WRAP program is.
Counterpoint: Do you think more groups are needed throughout the State? Rene: Absolutely! There should be independently run peer organizations like Pathways Vermont but also peer organizations embedded in the DA.s. Peer Organizations should be able to work within the system but not be of the system.
that staff from the facility are in Vermont to kidnap her and bring her back. If she were to be told, “no, they’re not,” it would escalate her, she explained. She needs her feelings of fear validated at those times – not to be told “yes, they’re here,” but just to be listened to. Rivet acknowledged that some of the support she receives comes from her previous relationship with the St. Johnsbury barracks. Before her head trauma, she had wanted to be in law enforcement herself and had done ridea-longs with them, helping out at times if a call involved someone she knew. “I’ve seen it from both sides,” she said. But Rivet said she believes it is more than officers helping her out because they knew her from the past because she sees how they interact with others in the community. They’re active participants,” she said. “They have a lot of rapport with a lot of different community members.”
I'll go back to the VIN diagram that says clinical staff and non-traditional staff both have a role. When both have an understanding of both roles it's a good thing. Groups also allow us to identify vibrant people who can be encouraged to join a standing committee. It'll be great to see three staff members and three peers join a committee together.
Counterpoint: If you had a million dollars or more what would you do with it? Rene: I would spend it on more small crisis beds as an alternative to the ER. I would also hire an IT genius to capture the data to support the positive impact of crisis beds.
Counterpoint: What do you want people to walk away with after they read this interview. Rene: I would love to know that people who read Counterpoint and agencies that may read this have an understanding of what Peer Support is. The Peer voice should be at every table and also heard at every table.
NEWS 10 NEWS
Fall 2021 2021 Fall
The Time for Disability Employment Reform is Now by NICOLE LEBLANC As we enter year one of the Biden Administration and year two of this nightmarish pandemic it is now more important than ever that we pass meaningful reform that focuses on moving away from segregated settings to a world where paying livable wages and ending benefit cliffs is part of the new normal for all people with disabilities. The COVID19 pandemic has shined a bright light on the dangers of segregation and discriminatory employment practices like paying sub-minimum wage. In addition it has highlighted the need to ensure that Essential Workers like Direct Support Providers, retail and so forth are paid decent wages for the work they do. Many people with disabilities who are at high risk of catching or dying from COVID often work in jobs deemed essential. The practice of paying workers with disabilities sub-minimum wage based on their productivity has been around since the 1938 Fair Labor Standards Act under Section 14C. Many people of color compare 14c subminimum wage to slavery. 14C is one clear example of the systemic ableism that exists in our society. 14C subminimum was does not promote self-determination or support people with developmental disabilities in becoming self-supporting. Lastly segregated employment is system centered not person centered. As we look towards the next 30 years of American with Disabilities Act, we need to raise expectations for all adults with disabilities and their families on the value of real jobs for real pay. The time is now for the Era of Low Expectation Syndrome to come to an end. We must move to a world of high expectations and presuming competence and employability. Disability Service system transformation can be exciting and scary at the same time, but it’s worth it. Right now the COVID19 pandemic has given us the perfect opportunity to redesign our society and systems to be more inclusive of the rights and wants of people with disabilities. There are numerous bills in congress that can support people with disabilities in achieving the American Dream of Competitive Integrated Employment often known as “Real Jobs For Real Pay”. One bill of importance is the Raise the Wage Act that would raise the federal minimum wage to $15 an hour and end the practice of paying sub-minimum wage over 5 years. Another big bill is the Transformation to Competitive Integrated Employment Act that if passed would provide money to states to support them in moving away from outdated models that pay people with disabilities subminimum wage in sheltered workshops and other segregated settings. In order for this to be successful it is vital that states invest in infrastructure to support disability provider agencies to develop person centered employment programs that help get people with developmental disabilities jobs and careers in the community at minimum wage or higher. One big piece of this is paying livable wages to Direct Support Professionals and job coaches who play a major role in our success living and working in the community. People with disabilities, especially those who self-direct their services need staff stability in order to be successful living and working in the community. In addition, we also need to create
effective training programs on successful job coaching as part of our transformation to Real Jobs for Real Pay. Other major reforms we must focus on is overhauling the Social Security Disability Insurance-SSDI, and SSI-Supplemental Security Income and other public benefit programs to eliminate work disincentives that keep people with disabilities trapped in poverty. As the minimum wage rises across the nation, we are going to see more and more people with disabilities falling off the cash cliff. In other words, for a non-blind worker with a disability who works 25-30 hours a week @ $15.00 an
As a society we must face the reality that the economic cost of living with a disability is much higher compared to those without disabilities. hour you will hit the SGA-Substantial Gainful Activity earning caps of $1310 much faster than someone who is blind. For the blind community the SGA earnings limit is $2190 for 2021. An easy way to solve this problem includes eliminating all earnings limits and just treat SSI & SSDI as Universal Basic Income. As a society we must face the reality that the economic cost of living with a disability is much higher compared to those without disabilities. A 2nd solution would be to raise the SGA limit to the same level as the blind community and adopt the $1 for $2 benefit offset above SGA. In the Supplemental Security Income program your income goes down $1 for every $2 you earn. Using the $1 for $2 offset in the Social Security Disability Insurance program would allow people with disabilities to earn more money and not worry about falling off the benefits cliff so fast. This is especially important for people with disabilities who live on their own in cities and states with very high cost of living. Getting rid of benefit cliffs will also go along ways towards reducing the stress and anxiety that comes with working part time with a disability as we move away from segregated work settings that pay people with developmental disabilities sub-minimum wage. In addition many people with disabilities face barriers to achieving full time employment ranging from stamina issues to attitudinal barriers like ableism in the business world. In the area of work incentives, we must expand what counts as an Impairment Related Work Expense-IRWE. One area that is due to an
overhaul is what counts as an IRWE in the area of transportation. Currently you can only count taxis as an IRWE if you live someplace where there is no transit. If you live in a place where there is public transit you are expected to use it unless you get something from your doctor that says you are unable to use regular public transit and need Metro Access-also known as ParaTransit. ParaTransit is often the only thing you can deduct as an IRWE. In the last 10 years transit options have evolved to include Uber and Lyft ride sharing and it is past time that our public benefit system allows taking Uber or Lyft to work as an IRWE regardless of what other options are available in our community. I say this because It is far too common for people to work in places that you can get to by car in as little as a 30-35 minute ride from home. However, when it comes to taking public transit or paratransit the commute to and from work can often be 1-2.5 hours longer than it needs to be. Many people with disabilities can’t tolerate long commutes, especially for those of us with autism and other disabilities who get car sick or nauseous from being in vehicles in the backseat for long periods of time. Other work incentive reforms we need to expand on are deductions for medical and dental services not covered by insurance. As someone with autism and anxiety being able to deduct things like massage, acupuncture, dental care cost, alternative medicine and the cost of independent direct support staff used during both work and nonwork hours. I say this because, many adults with autism without Intellectual Disability do not qualify for Medicaid HomeCommunity Based Services and having access to job coaching and home support is vital to our success in the community. For young adults the Student Earned Income Exclusion should be expanded to age 29 from 22 so that more people with disabilities can attend college and training programs that may help them achieve greater economic stability outside of the traditional jobs typically done by people with disabilities like Food, Filth Flower, Filing.
Conclusion
The silver lining of COVID19 pandemic is that it provides us with a great once and lifetime change to make the social safety net for the disability community truly person centered by ending systemic barriers that prevent us from achieving true community inclusion and selfsufficiency without the stress of benefit cliffs. The era where being disabled is like a fulltime job must end. As allies and advocates we must fight harder now more than ever to make the lives of the disability community easier. In the Long term COVID19 is going to create a larger population of people with disabilities and chronic health conditions due to the effects of Long Haul COVID. In my opinion the impact of this pandemic virus feels similar to days of the polio epidemic era. It is my hope that we can use the lessons from this nightmarish pandemic to create a world more accommodating and accepting of disability as a society. As the old saying goes, “It should not have to happen to you for it to matter to you”. If we all live long enough, we will all join the Disability Club. Climate Change and Disability are Not partisan issues nor should they be.
The Arts
Fall 2021
Ever take notice about how, when the blessing warmth of sunshine as well as either morning blanket of dew or shower of rain drops caresses and nourishes the earth, flowers and leaves slowly bud forth and eventually blossom; life in various forms then venture forth, essentially in gratitude for being provided another glorious opportunity to grow as well as to also thrive?
s s e l e m ho s r e k a e sn
Although this is something that one can easily grow accustomed to experiencing on a regular basis, this is something that never should be taken for granted.
by MORGAN W. BROWN Montpelier
truth be told however, those foul footwear are in much better shape, than the person who will be barely surviving inside them This old poem of mine, written in 2006 prior to when I was about to leave the “winter quarters” — temporary housing — I had been staying and have to pitch a tent in the woods for the summer and early autumn again (the last five years of the agonizing twelve year stint of living without permanent housing during my last go around living unhoused), is dedicated to those who are either currently living unhoused outdoors or are going to exit motels/hotels without anywhere to
whose remedy will not be found just by a new pair, but within an abode of their own, one providing a permanent roof and shelter, under which to live more restfully instead.
by MORGAN W. BROWN Montpelier
go save pitching a tent somewhere.
Peace
House Cat
Maybe peace is like a tree growing and growing can be scary and painful and growing makes us bigger and peace is like a river between, through... and all the water from the sky
fona – stock.adobe.com
is like tears helping us grow. by SARA NELLER Rutland
Tawesit – stock.adobe.com
Once again, this too, the essential growth and thriving of both individuals and all of humankind, is something never to be taken for granted for that matter either; because, absolutely, none of these happen on their own.
restless thoughts toss and turn, without end deep within mind, body and soul whether day or night, about once again becoming homeless knowing the only place to then call home 24/7, will be one pair of badly worn out sneakers, long overdue for replacement
Hope and faith are much the same; which, as such, one should never take these for granted either. Both should be carefully nourished, conscientiously, on a regular basis as well; otherwise, there could be severe drought conditions, where hope and faith could potentially languish and perish from the gentle and tender soul of humankind, which is always needing outward growth while hungrily seeking to thrive.
11
I’m looking at Topaz, impressed with his precise feline posture. A just about perfect triangle, glorying in sunlight, in his own stillness. Perched as he is on the kitchen’s wide, warm window sill. Balancing on the stillness of it all.
by D ENNIS RIVARD Windsor
asmakar – stock.adobe.com
Never Take For Granted
.
The Arts
12
Fall 2021
Book Review
Living with the Neighbors
by ANNE DONAHUE Jodi Girouard’s autobiographical book “Living with the Neighbors” will surely hit home with others who are voice hearers, as well as provide insights to those who are not. Her story draws one into the pain and desperation a person can experience when malicious voices constantly intrude on life. She also shares hope as her journey leads her not to resolution but to a stronger ability to confront her voices and affirm her worthiness to live through reaching out to others with her poetry. “The neighbors” are the name Girouard gives to her voices as a way to attempt to make them outsiders – overheard from elsewhere rather than coming from within. It is “less scary than a hallucination,” she writes. “If the noise is just people through the wall talking, then it’s not so terrifyingly real.” Girouard quotes the loud and aggressive voices as telling her, “Kill yourself, you’re no good. We’re coming to get you.” These have been “evil voices that haunted my life.” Parts of the prose sections of the book include evocative descriptions of the loss of control psychiatric survivors feel when the medical system – especially during hospitalization – takes charge of decisions. She would know. She has been hospitalized more than 30 times, and while she identifies those times that she received much-needed help, she pulls no punches on times of abuse of power or discrimination. Her diagnoses include PTSD, bipolar and depression. “So many injustices because I had a label,” she reflected at one point. “People who thought they were better would tell me what to do. Tell me how to live. Sometimes all I wanted to do was to open my mouth and scream at the stigma.” She contrasts that with the path towards healing that she says began with her stay at Alyssum, the peer-run respite in Rochester. It was the place that finally “brought me the will to fight, to keep on,” she said. The most extended section of the book – the first 13 of 30 chapters – described her experience with peer support in the farmhouse setting along the White River in great detail. But Girouard is far more a poet than a writer of prose, and it is her poems that give the structure, beauty, and strength to this book. The storyline of her efforts to reclaim her life, beginning with the stay at Alyssum and continuing for some five years through an overdose and several hospital and crisis program admissions, is interspersed with the poems that reflects on the experiences retold there. While her writing is sometimes awkward and repetitive and includes a fair amount of districting, extraneous information, the poetry is sublime. It often captures in several lines what pages of prose try to communicate. Take, for example, just several lines from the poem that opens the first chapter, titled “My Mind’s Illness”: “I yearn to understand why I have this disease, why my insides shout, why my meaning is questioned. I put down my thoughts as the buzzing continues, the angry mosquito in my ear with the noise I can’t fade from.” And then from that intense image, ending in hopefulness: “Let my mood evaporate the harsh insecurities of my illness. For I am a survivor, floating in the water, tightening lifejackets on others, while wrapped in my own.” Girouard skillfully weaves memories of her early life into the story as reflections during her time at Alyssum, sharing some of the traumas that she experienced as well as some that will bring a cheer -- like the youthful escape with two other patients from a locked hospital to dance in newfallen snow.
Girouard repeatedly tells herself, “I can do this”: fight back against the voices. Yet much of the narrative covers the painful terrain of repeated relapses. After one stay (in a very dehumanizing atmosphere) at the renowned Shepard-Pratt, she emerges with voices quieted for the first time by a new medication. It turns out to cause heart damage that nearly kills her. The thread of hope is in her emerging recognition of her talent and, in particular, her ability to bring meaning to others through her poetry: the lifejackets she provides to Jodi Girouard others. It was at Alyssum she first identified that source of strength. “There, I had discovered that I could use my gift of writing to really heal. To dispel the depression, the neighbors, the voices, the anger and humiliation that penetrated my world.” She added at another point, “I decided I was best when I helped others. I wrote more, [I] thought less of the haunting words that spun within me.” In the magnificent poem that constitutes most of the final chapter – “Resting Between Recoveries” – she reprises many of the significant elements of the book itself, including sources of solace and the value of her writing – “Pieces of my writing temper and also revive Some of the betrayal of my mind. I dwell deeply in stories I create. I separate myself from the pain, the stagnant days of unrest.” The poem describes both her pain and trauma -Forty times I have been shut off in a meditative cell, asked to control The burnt ember of my youth that was staked, lit, and enflamed in the anger of men. -- and her hope -And then perhaps I will watch the birds reap The harvest I have given out over the years. I will watch them soar into the heavenly blueness above, Stretch out their wings and glide in rest. Peaceful rest. And the happiness that flutters inside will come to settle Permanently in my mind And someday rest will resolve the battles I still wage.” The dedication includes her “four loving voices,” and, knowing that voice-hearers often experience both aggressive and supportive voices, I kept waiting for when they would appear. They never did. Her voices consistently – then and still – are full of cruelty and ridicule, telling her that she is unworthy of life and urging her to die. The loving voices she was referencing are the real ones in her life. She is blessed with a deeply supportive husband and three sons. The youngest is five when the story begins, sobbing as his Dad takes him home when they leave Girouard at Alyssum. As she reflects in “Resting Between Recoveries,”: My boys and husband gift me tranquil days that determine me to keep on.” The second to last poem honors the relationship with her husband: “I am not alone for I am blessed with a man that holds my hand, walks by my side, lifts my chin up to his when I am torn inside.” The closing poem of the book is “Natural Order.” The poem won first prize in Counterpoint’s 2018 Louise Wahl Memorial Writing Contest, an event Girouard describes as bolstering her belief in a positive future for her writing. “Living with the Neighbors” is published by DesignWise Studios. The book and cover design are by Stephen Kastner and the original art by Eleanor Workman. Girouard has two published books of poetry. A continual stream of Girouard’s poetry can be followed online at https://jodigirouard. wordpress.com
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Fall2021 2021 Fall
My garden is far from perfect, I mean I never really mulch when and where I should. I do fertilize using natural products like compost and such. Did you know blueberries love coffee grounds? Well they do! I grow strawberries and I am good at laying down some straw for the berries to ripen on and the slugs don’t get to them. I have to keep an eye on them as they ripen because the birds enjoy their yummy sweetness as much as I and my husband do. I love wild flowers and allow the milkweed to grow so the monarchs have a place to be and lay their eggs and have their babies eat the leaves to become butterflies themselves by summers’ end. I love their chrysalis, a beautiful jade green with sparks of gold along the top edge. Magnificent really.
Can’t help but think that poets have something like a duty I guess to try bringing some cheer to the low in spirit. One way or another, and also a responsibility to bring some gloom up close to those who would otherwise be missing out on the pearls of wisdom that come along attached to the very bottom of depression’s most impressive boat. And you could call it a lifeboat, maybe. I’m not sure I can say. But one could.
by D ENNIS RIVARD Windsor
by L AURA LEE SAORA SMITH Marshfield
The Brain It starts in the brain You cannot refrain It’s like a mindful cloud everything becomes so loud You get such a headache because reality is so hard to take When you get a headache It’s time for you to take a break Your brain starts to freeze Which doesn’t make you at ease The brain holds so much power as you get new thoughts hour to hour The most powerful element and you can’t get rid of it even by sellin’ it It holds so much knowledge and what will get you through college As the ideas emerge you try to put your thoughts into words Be good to your brain even if you’re feeling drained There from the time of birth It’s your job to value it for what it’s worth
by N IKITA LAFERRIERE Middlebury
Share It! Send it to us at:
jolygon– stock.adobe.com
Can’t Help But Think
I allow for lots of bee balm to grow to draw in the humming birds and find them quite delightful flitting from flower to flower. What I find most amazing about my garden is that hundreds of bees find the joy in being in my garden. It is as if I planted all my flowers to bring in the bees as they buzz around my head and body. They never sting me or at least they haven’t yet but I have to say I love my garden of bees and their lovely buzz. They share quite nicely with the other creatures so I can’t be mean to them they are one of Gods’ creatures after all. They help to pollinate the apple and pear trees so they will bear fruit and the flowers their seeds. It is all in the great plan of things and I love my garden of bees.
JoyImage – stock.adobe.com
A Garden of Bees
counterpoint @ vermontpsychiatricsurvivors.org or by mail to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 Please include name and town
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Fall Fall 2021 2021
• Louise Wahl Memorial Writing Contest •
Things I Learned at 18 1. Some people get it, some people don’t. People say that life can change in the blink of an eye and even the uninitiated can agree on an intellectual level and nod sagely, but you never really get it until it happens to you. Seriously. I can’t emphasize this enough. Until it happens to you, you just don’t get it like the rest of us do.
2. “Sudden standstill” is a good phrase to think about before it happens. I remember a fall morning that was gray and damp, and fog rose from the Connecticut River below town. Even without the sunshine the trees marking our property line glowed with bright leaves working their way towards peak. Breakfast was over. My father had gone to the barn and my mother was at an early morning ladies group at the rectory. I lagged behind for a few minutes with my brothers, Cam, who was 19 and puppyish, and Redmond, who was 20 and responsible. I loved them both and loved being with them. I was so proud of them. They were a matched set, tall, lanky and towheaded, both dressed in denim and flannel and pulling on identical brown work boots. Even that early in the day we were all wide awake and full of energy, laughing easily over little things. You know. Young. Cam carried my books to the car for me. “Study hard, Roz,” he said, grinning. “We don’t want any slackers in this family.” “Yuk, yuk, very funny,” I responded, knowing he was teasing. I was a straight A student and Cam had had to take remedial classes every summer and even then graduated a year late. I stole his feed store cap and teased him about his fashion sense. I watched my brothers walk over the grass to our old red tractor, still laughing. They were probably talking about the usual things like girls and trucks but their words were quickly sucked into the wet air, quiet and absorbent as gray cotton. I remember smiling, but it was time to go to school so I got in my little car and headed out. I drove slowly down our driveway which was perpetually greasy with wet clay. Ruts from the farm machines caught my tires and slung the rear end of the car from side to side. Where our driveway met the dirt road was a bump and a gully that never went away no matter what we or the road crew did and I crossed over that spot cautiously. I gave my brothers a little see-yalater honk of my horn and turned my thoughts to what the day might hold. No cell phones back then, of course, so it was hours before I learned what had happened. Redmond had driven the tractor slowly and carefully down the driveway like he’d done a million times before, with Cam standing behind him and holding on to the seat. Redmond did everything right but when he drove through the gully the tractor bounced the tiniest bit and Cam lost his hold, falling backwards on the ground. His head hit a little rock no bigger than a golf ball but with such force, the doctors told us later, that his brain shifted inside his head momentarily and hit against the inside of his skull. Hard. Redmond didn’t see or hear anything but he felt the difference and turned to see Cam lying still and silent in the clay. His eyes were closed and he couldn’t be roused.
by Cheryl Lawrence
Cam’s accident took some kind of myth away from me, some kind of foundational belief that we’ll all spend our days doing the things we plan to do and thinking about the things we choose to think about. Surely Redmond had never expected to be racing across the slick ground shouting for help, nor had my father expected to be calling an ambulance from the telephone in the barn. Surely not! My mother had planned to come home and make pies with fresh apples, and I had planned to go to work at the nursing home after school but all these plans had changed in the time it took a shooting star to sear across the night sky. The thing is, you never know, when something like this happens, how long it will last or how it will end. You only know that things have changed, but you don’t know how.
3. It’s wise and it’s healthy for you to stop asking questions when you know there are no answers. Suddenly, we weren’t the bosses of our lives anymore. Life itself had become the boss of us. Schedules dissolved like wet paper. Priorities were set for us by Cam’s condition and my parents made decisions based on his needs. Cam’s accident left us gasping. I understood how come people cry out “Why? Why me? Why us, why our family?” It made no sense and we didn’t deserve this. We’d always been hard workers, honest, paid our bills and tithed. My Dad was amiable and my Mom generous and we lent a hand to our neighbors whenever called upon. We were good people. I’d been taught to believe that everything that ever happened to us happened with God’s permission for reasons of His own that we were not to question. My mind couldn’t solve the puzzle of it. That a kind and loving God could have let Cam be hurt on purpose for some sort of test or learning experience was unthinkable. It was also unthinkable that God had turned away and was busy with something else right when Cam had needed him, but if God wasn’t in control and Cam’s fall from the tractor was as random as drawing a name from a hat, where would hope come from and what truths would be left to stand on?
4. Time can change. Cam’s accident took away minutes and hours and turned time into large blocks like crystal clear ice. There was the block of time we spent at our small local hospital while Cam was stabilized. Then came the block of time when he was being transported an hour away to Mary Hitchcock for more advanced care. We all raced up the highway behind the ambulance and every shriek of the siren seemed to sav, “Cam’s hurt! Cam’s hurt!” I clasped my hands so tightly together that my nails dug crescents into my own skin and I never even noticed. Redmond reached over without a word and covered my hands with his. We spent a block of time in the waiting room at the Hitchcock ER, where the too-bright lights created a snowy haze. My head was trapped inside a bubble of white noise. I head the milking-machine sound of my own blood rushing in my ears. The rustling of
1 PROSE
a newspaper was incredibly loud, as was the ticking of an analog clock and the sound of staff in crepe-soled shoes walking in the carpeted hallway outside the room. Yet when the doctor finally came to talk to my parents I could see the concerned expression on her face and I could see her mouth move but I couldn’t hear a word she was saying. My parents listened, then turned to converse with each other and then my father turned back to the doctor and nodded. She produced some mysterious, urgent papers for him to sign and then she hurried away. Oddly, the clock began to run backwards. First it said 10 a.m. but when I checked it a short time later it said 8 a.m., two hours earlier. It was dark outside when a candy striper brought us muffins and orange juice, dark again when a housekeeper came and cleared it all away. During the waiting, I couldn’t always tell if I was asleep or awake. Some moments became trapped in amber in my mind and I carry them with me today and always will. I saw my parents sitting across from me in the waiting room, my mother slumped against my father, crying and red-eyed. I saw him put his arm around her with an expression of complete incomprehension. I saw Redmond sitting beside me like a man who wakes up too tired to put on his own boots, his head hanging down, leaning forward in a plastic hospital chair with his elbows on his knees and his hands just dangling in space. Two days in and Cam still hadn’t woken up.
5. When other people feel very comfortable entering your mind and rearranging things to suit their own tastes, it becomes difficult to know which truth is The Truth. It’s best for you if you don’t let them rearrange you, and you don’t try to rearrange them. Cam was moved to another part of the hospital and we all trooped to a larger waiting room. Our extended family waited with us. All the aunts brought thermoses of coffee and brown sacks full of sandwiches and banana bread. They circled around my mother speaking words of reassurance and encouragement, sweet and sibilant. Then men sat against the wall with their legs crossed, ankle over knee as men do, talking deep and low and holding their cardboard cups of steaming coffee like props. And every once in a while people would burst out laughing and it seemed okay, normal in an abnormal situation, an echo of the everyday. Finally, after Cam had been at the hospital for almost a week, Redmond and I were allowed to go together to visit him for five minutes. There he was in bed with both side rails up. His head was wrapped in thick white bandages and he had two black eyes. Redmond drew a chair near to the bed and reached out to rest his hand on Cam’s arm but I couldn’t bring myself to touch him. I found myself wondering if the person under the dressings really was Cam. Really, you couldn’t see him so who would know? I felt indignant that holes had been punched into him and tubes that drained things in and out of his body had been inserted without (Continued on page 16)
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Fall 2021
• Louise Wahl Memorial Writing Contest •
1
The winners!
POETRY
untitled yesit rains in June leaving watermarks upon the ceiling that you travel with your eye mind fingers while your body is elsewhere elsewhere being abused.
PROSE: #1 $100 Things I learned at 18 (Cheryl Lawrence) #2 $50 Who’s Crazier (Ron Merkin) #3 $25 Walking Through Depression (Amanda Perry) POETRY: #1 $50 Untitled (Eileen Dolan) #2 $ 30 Silent Scream (Georgia Moody) #3 $10 TIE: Affirmations (Amanda Perry) Down the Years (Garret J. White)
3 POETRY
Affirmations
I just want to go home I want to think that I will be safe I just want to go I want to hope that I can do better than I was I just want to I want to remember what it is like to love I just want I want to remember what it is like to have fun I just I want to remember what it is like to be me I I want to remember: To be stronger when things get tough Laugh when I really feel happy Share my kindness with everyone I love Most of all, I want to always remember That I am equally as important to myself as I feel everyone else is to me
Silent Scream
2 POETRY
A silent wish to die The sharp object nearby To stop the pain and misery Another wound, outside the inner pain Streams a flow of blood stain Help me, the mind and body scream The torment inside Fury and despair together plied Help me, or I will die Now you see the sign of my spirit killed The body, mind and soon the heart stilled Peace and escape from torment
Never, thought I, would I make this choice As I helped another person who used their voice Help me, I don’t want to die Later my beaten down spirit desired To scream loudly in a silent wilderness required that no one could hear and think I have lost my mind Locked alone with the blade A quick slash for the red shade To empty the raging anguish STOP! My fighting spirit commanded I want to be happy, not dead Pursue life and happiness for healing Horse therapy was the beginning step Treatment and therapy weekly rep A realization of a change occurring Desire for life and not to die Happy not to have succumbed to the lie Death is better than life
TIE
Down the Years
3 POETRY
Cheers! were bayed out of the stifling air where, in the billowing smoke, we threw back another round of gun-shots riddled, in whiskey, thick. Where cigarettes hung like ripened fruit, on lips barking clear across the bass and the light-strewn, sweating basement walls. While I, brimmed up tight in the haze of remembering, rocked my head, back to those cold November nights, when I once watched my Mother’s blue-bathed hands wring the neck of another wishbone-bottle. Under the dim grey roof, her sky, she sat to rust like the railroad tracks heard knocking on our door for another swift eviction. It was there my unsleeping ears had heard child safety locks snap crackle and pop, pill caps, from the rumble of the cupboards walled, like my own stomach. “Don’t be like me,” she said. – It’s echo, deep to match the bass and the next corrosive shot-gunned bottle, that I outpour to the other silhouetted grievers, drenched in the years’ cold sweat, who swallow hard the cups of bittersleep to drown the weight of their early mourning.
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THINGS I LEARNED AT 18 • Continued from page 14 his permission. I didn’t like the sound of the oxygen and I hated all those miserable smells and felt like I was going to pass out or throw up. Redmond had to walk me out of the room with an arm around me, holding me up. Later, one of the aunts settled in beside me in the waiting room and hugged me. Her perfume fluffed around her like a feather boa. “Don’t worry, Roz,” she said. “Cam’s strong. He’s a fighter. He’ll be here in the hospital for a while but then they’ll find a medication or figure out an operation that will help him and he’ll be home before you know it, as good as new. I promise!” I knew for sure that this promise was as rock solid as her perfume. I worked in a nursing home. I knew that lots of people with head injuries didn’t just hop out of bed one day, their normal selves, returning to their usual lives. Some couldn’t walk or feed themselves, or they wet their beds. Some lost their memories or their ability to speak. Some never woke up at all. Here was another puzzle. Maybe my aunt truly believed what she was saying. I, as a teenager, didn’t feel that it was my place to share with her what I knew about head injuries. She might plummet to earth with wings of melted wax, or become angry or scared. Or maybe she was aware that the things she was saying weren’t true and she was only saying them to protect me, in which case I felt obligated to protect her back by letting her think I believed her. Oh, Lord, it was all too confusing and I could barely mange a weak “thank you” and I probably looked like a deer in the headlights because she suddenly laughed and patted my knee. “Well, Roz, between the two of us we must be able to find things to talk about that are a little more cheerful.” She began chattering brightly about everyday ridiculous things. Meaningless things. All I knew to do was just to play along, listening and smiling and bobble-heading. I didn’t realize then that it’s never a good sign when your insides don’t match your outside. Racing thoughts and heart full of grief on the inside, superficial happy conversations on the outside. Never good. A part of my mind that longed for hope based on truth gave up and was pulled away like one segment of a freshly peeled orange. Days slammed into each other. Family and friends that I used to see every day weren’t there, but the faces of strangers were. Doctors, nurses, housekeepers and hundreds of others rose into view like Thanksgiving Parade balloons and then silently floated away. Few were known and even though they were all kind and caring, few were missed. Even very good people are not interchangeable. Getting sleep was difficult and my mind and my body began to drift apart. Once I was travelling north on Interstate 91 and even when I counted exits and read signs I was convinced I was travelling south. Once I could have sworn that I’d travelled the same length of highway three times on the same trip, caught in a science fiction infinite loop. I couldn’t eat. My stomach felt like a clenched fist. I had never like coffee before but now I drank pot after pot, then slept less, then needed more coffee to stay awake. My hands trembled from the tsunami of caffeine and my penmanship was strange and spikey. I buzzed around leaving tasks incomplete and speaking rapidly, changing topics mid-sentence and losing words.
6. Your thoughts don’t run across your forehead like a neon sign. You have to do your best to share them with the people you love and trust. It never occurred to me to ask everyone else if things had gotten weird for them, too. I just assumed they were going through the same experiences and wondered why they were handling things so much better than I was.
7. Guilt bullies your mind if you let it, even if you have no reason to feel guilty. We created a family schedule. My mother pretty much stayed at the hospital 24/7. Redmond and my father were to give the farm the attention it needed and I was to return to high school, and we’d all take turns visiting Cam. By not seeing him every day, I felt that I was betraying Cam. Maybe I’d already betrayed him, I thought. Maybe if I had joked with him a little longer that morning, some cosmic change would have altered the course of events and the accident would have been avoided. Or maybe me honking my horn when I drove away had startled Cam and that’s why he had fallen. One night I dreamed that Cam had died. Even my dreams had let him down and I felt afraid and superstitious. But as I walked through our house the next day, alone and impaled on a spear of guilt, it wasn’t Cam’s ghostly presence that haunted me, but the presence of his absence. There was the empty pace by the wood stove where his boots should have been, an empty place at the table, and empty space in the air where his voice and his laughter should have been. I talked to God about these things every night, but I think it was myself I was asking forgiveness from, and I refused to grant it.
8. Secrets are meant to be shared. As a child, not many things are more exciting than being asked, “Do you want to know a secret?” Secrets were golden. Knowing secrets elevated your social standing and admitted you into an exclusive club. You learned which girl had a crush on a certain boy and what your friend was going to be given on her birthday. Secrets were fun and thrilling. But here’s a convoluted fact about guilt. You can feel guilty about feeling guilty, so you don’t talk about it and you become its hostage. You can clutch it close to your heart in an attempt to control it but it will just bore and gnaw its way right through you. I wish I had been able to share those thoughts of guilt. Secrets are one thing that you can give away to another person and when you do, neither of you own it.
9. Let God be god and let the universe unfold as it should. A woman from our church came to visit one day, bringing flowers and food from the congregation. She prayed about faith with my family. “Let your thoughts be Godly thoughts,” she urged. “Speak words of healing and faith. Don’t doubt that God can restore Cam, Don’t speak doubt or discouragement into his life!” The fringe on her shawl shook with her enthusiasm. “Help us, Lord, to make way for You to do Your supernatural work!” “Amen and amen,” said my family, but not me. I was already hiding my doubts about Cam’s recovery but now I’d have to be more careful
than ever about the things I said. Was our friend saying that just expressing a negative thought could keep Cam from getting better? Because I couldn’t be sure which things could be said and which couldn’t, I decided not to say anything at all and just to be on the safe side I wouldn’t even visit Cam any more. To my secrets I added lies. “I can’t go see him tonight. They need me to work a double and I can’t get out of it.” “I have to stay after school to catch up on my math.” “I don’t feel well.” Six weeks past.
10. Trust your inner voice. To this day I don’t know why I didn’t shout out, “Hey, I think I need some help here! I think I’m going a little crazy here! My mind is pulling itself apart. I’m full of doubts and secrets and lies and magic. I’m trying to pretzel myself into believing things I don’t really believe and I really can’t do it anymore. I really think I need to leave for a while.”
11. The ending of one thing often leads to the beginnings of other things. Seven weeks. Then, suddenly, another shooting star. My mother called, relieved and excited and almost hysterical with good news. All of the swelling in Cam’s brain had gone down. Cam had opened his eyes. Looked around the room. Spoke to my mother and the nurse. Asked, in great surprise, “Why am I in a hospital?” Wow! To celebrate, Redmond and I went out to eat at our favorite diner. We couldn’t stop talking about all of the wonderful things we’d do when Cam got home and the huge party we were going to throw him. Even the diner seemed happy with us. It was warm and smelled of bacon and toast. There was a jack-o-lantern on the center of our table and orange and black streamers were taped around the doors and windows. There was talking and laughter and the staff was dressed in Halloween costumes. I was so hungry! First, I saw my plate of breakfast being set on the table in front of me. Then I saw it was being passed to me by a green hand. I looked up and saw our waiter, dressed as Frankenstein. His face was marked with clusters of random, clumsy stitches and a jagged crack shot like a lightning bolt down his forehead. I thought I was screaming. I might have been. My self flew to the back of my mind and I found I liked it there, where it was quiet and peaceful. I saw the world from a distance, through the wrong end of a telescope, reflected in a fish-eye mirror. Redmond was shaking me and calling my name. He looked so troubled and I loved him so much but I just wanted him to leave me alone. I was too busy disappearing to worry about him, melting from the edges in. I didn’t want to rejoin everyone out there. One of the waiters on duty that day was also a volunteer EMT and he rushed over to help. He put his face very close to me and spoke slowly and clearly as though I was stupid. “Can you hear me?” he asked. “Do you hurt anywhere? Are you sick?” Of course I was sick and he was the stupid one because he couldn’t figure that out. My chest was tight and my heart was jumping. I couldn’t (Continued on page 17)
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Fall 2021
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THINGS I LEARNED AT 18 • Continued from page 16 breathe and my whole body flashed hot and cold. Then I realized that the EMT was also dressed for Halloween, with a pointy black hat and plastic spiders in his long gray beard. He was looking at me so seriously that I just had to laugh. And laugh. And laugh until I cried, choking on huge viscous sobs which turned inside out as they rose in my throat. I put my hands over my face
and felt the tears streaming down. I looked at the world between my fingers. The ambulance was summoned. I was assessed at the ER and the screeners were called. I was diagnosed with anxiety and depression. I was put on meds. And that’s how I figured out that smart, strong people from hardworking, loving, honest, tithing
families, even people who don’t deserve it, can be diagnosed with a mental illness.
12. Here is a really good bit of advice if mental illness ever happens to you. Don’t worry too much about what the uninitiated say or think. Just walk your path, and search for the people who “get it.”
• Artistic Commentary by Our Readers •
Art by: Ta Ma
Above and Right: by CP
18E EDITORIAL PAGE
Fall 2021
Opinions Looking for Answers
A Cold, Cruel World
TO THE EDITOR: When I was 26 I worked on a street paper in Madison, Wisconsin. During my commitment, authorities made the case that I lacked gainful employment when in fact I had been gainfully employed on a street paper. I was struck by the way progressives from the college and street papers viewed working, as opposed to the way I was abused and denied food until I signed in to a mental health establishment. In my life, there has been no meaningful redress of grievances, nor apology, nor addressing of trauma, leaving me with the same sense of hopelessness as when cops assault me. Then in January, I was assaulted on my own doorstep by members of the Berlin Police Department following a month-long incarceration at Newport jail. Where was Phil Scott’s sense of a person’s stability when the hotels and the voucher program can arbitrarily request police assaults of clientele? (Hilltop, Barre) Where do they figure hope is supposed to come from, and shouldn’t the governor’s office be expected to do a far better job? CASEY WALSH Berlin
TO THE EDITOR: I was born prematurely with two hernias and a learning disability that I was unaware of until I reached the middle grades in school. In the first and second grades in a one-room school, I was beaten on the head every time I answered a question wrong. That same teacher tortured other students the same way but with different methods. She had a nervous breakdown. The same teacher I had in the third grade was mean to me in the fifth grade, and she nearly flunked me because I was a little slow. My older brother refused to help me at all. Selfish! Without my mother, I would never have made it. I had an arduous struggle all through high school and two years of business college. After school, I was required to help on the farm. That reduced my homework time. On one occasion, on September 3, 1971, which was a hot late-summer day, I had a terrible falling-out with my father, who threw a calf-pail at me, but it hit the milk room door instead. Then he was going to run a pitchfork right straight through me, but I rushed back to the house, and my mother sent me to bed. RICHARD A. WILLIAMS Bennington
Funding available for support group and peer operated projects Got a great idea for a support group or project? Applications are being accepted by VPS for support groups and peer operated projects for this new fiscal year (2021-2022) You can find the application online at https://www. vermontpsychiatricsurvivors.org/ peer-operated-projects-1 or if you need an application sent to you, leave us a voice mail message at (800) 475-4907, Extension 5, with your name and complete address.
Publisher’s Commentary The VPS Board of Directors and staff want to thank everyone who contributed to this issue of Counterpoint. This issue highlights many positive developments that are happening among advocates, peers, and survivors. VPS has appointed several people to different State councils. People have been appointed to the Mental Health Forensic Council, the Mental Health Integration Council, and the Health Equity Council. These appointments represent an important step in the right direction where peer voices will be heard on many important topics that impact the care and wellbeing of individuals with lived experience. Rene Rose was interviewed for this issue. She said that sometimes there’s a fear of not knowing how to work with people from an unfamiliar work scope. When we reach out to help, we all take a risk, and kudos to all who do just that. Congratulations to the winners of the Elizabeth Wahl writing contest, the results of which are posted in this issue! The judges had to make some tough decisions but were happy to have played a role in identifying some brilliant and creative work. Look for exciting new VPS initiatives for members soon. We have been working hard planning how to bring peers closer together so we get more seats at the tables. Be well and be safe!
Send your comments or reactions to editorials or commentaries to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701, or to counterpoint@vermontpsychiatricsurvivors.org Please include name, address and email.
COMMENTARY .
Fall 2021
19
Integration Council by ANNE DONAHUE Back in the ‘70s, my grandfather was living with us while in hospice for terminal cancer. He had a fall, precipitated by a stroke, and in the hospital – though he was unconscious – they discovered from his moaning and then the swelling that he had broken his ankle. It was cast to ease pain, though he was in his final days. I was the family member keeping vigil at his bedside when the orthopedic doc stopped in. He cheerily told me that the ankle was improving, and that tomorrow, he would change him to a walking cast. Sometimes, in terms of a failure to see the whole person and integrate care, we do “know it when we see it.” And we can fix it pretty easily. While we also sometimes know it when we see it when mental health is not integrated with the rest of health care, we don’t recognize it as quickly – and we don’t fix it. We don’t actually know how: we can’t fully get our heads around what integrating mental health with health care means because it has never existed. And it is different from other health care that is not integrated – teeth and eyes, for example. It is different because it is based on the more extended embedded history of stigma and discrimination. It is important to recognize that integration is not parity, and parity is not integration, yet they are inextricably connected. We learned a long time ago that there is no such thing as separate but equal. Segregating psychiatric hospital care is both unintegrated and stigmatizing and does not achieve parity in quality or reimbursement. Segregating insurance management is a psychological and stigma barrier to integrated care; it communicates that mental health is “too different” to manage in the same way as any other health condition. Segregating how we think about responding to a crisis in emergency room care – asking While we also sometimes what the state will do know it when we see it about it while patients continue to be left when mental health is not without treatment, integrated with the rest under guard — is care we would not tolerate of health care, we don’t for any other emergency condition. recognize it as quickly – Undercompensating and we don’t fix it. the mental health workforce blocks integration. We have a workforce crisis at multiple levels of health care, yet no integrated response that would place mental health on a par in responding. You cannot integrate care if there are not enough mental health providers available to deliver it. Disproportionally under-reimbursing psychiatric care blocks integration. Why would a primary care office bring a mental health provider on board to drag the budget down? That’s a lack of parity preventing integration. Segregating community mental health centers from community health centers both denies parity – one caps mental health funding, delivered by a separate state entity —while the other does not — and neither the funding streams nor the settings can create integrated care. Allowing access to primary care by those with serious mental health challenges leads to complaints about “those people being disruptive” – casting all with one brush – and as if the health system did not have any responsibility to treat disruptive symptoms, and no one else was ever disruptive. Feeling unwanted, those folks stay away and don’t receive primary care; no surprise, their health outcomes are so poor, let alone the impact on health costs and unnecessary ER use. Some responses are to import primary care into mental health centers, which re-ghettoizes health care for those with serious mental health challenges. There is no such thing as separate but equal. We use the label “treatment non-compliant” disproportionately and more publicly in mental health care, ignoring that it happens more frequently in patient responses to recommended medical interventions. That adds to the stigma and unconscious bias. Do you know how it was applied to me? I was referred to UVMMC for a neurological emergency: my legs were spontaneously collapsing under me. The neurologist there decided it was caused by my use of Nardil, which causes orthostatic hypotension – which has very different effects from one’s legs collapsing – and which I had been using for more
than a decade. I told him that my We use the label psychiatric history, involving multiple “treatment non-compliant” hospitalizations before disproportionately and this medication was finally identified to more publicly in mental stabilize me, meant it should not be changed health care, ignoring that without first consulting with my psychiatrist it happens more frequently and primary care in patient responses to doctor. Instead, he listed recommended medical my refusal to reduce the dosage as treatment interventions. noncompliance. Do we detect a bit of diagnostic overshadowing here? That the psychiatric label was swallowing up the ability to discern appropriate diagnoses? But the best and most basic example, for me, of the failure of the health care system to understand the role of implicit bias, discrimination, failure to provide integrated care — and failure to listen to the voices of those most affected — is the persistence of the use of the term “behavioral health” as an equivalent for mental health and substance use conditions, and only for mental health and substance use conditions, despite the pleas of many of the recipients of those services. It’s an inaccurate term when used only for mental health. Obviously, mental health conditions are often addressed through behavioral therapy, and thus many such conditions come within behavioral health care, but so do many other health conditions. And many mental health conditions or symptoms have significant medical components, and some may be primarily medical in nature, just as many other health conditions are primarily medical in nature. Why does it matter? The problem is not recognizing the benefits of behavioral intervention for mental health; it is about implicitly ignoring and risking a failure to highlight the behavioral intervention needed for a person with heart disease. Likewise, either condition may benefit from pharmacological or other medical interventions. It is thus a barrier to understanding the inter-relationship between behavior and all of the health, and a barrier to fully integrated, holistic health care. I have a higher risk of osteoporosis because of the biological impacts of my history of depression. My primary care doctor needs to know that. I need to engage in behavioral change — behavioral health care — to maintain a schedule of weight-bearing exercise – to address it. It is also stigmatizing and hurtful because the message is that the cause of my condition is a behavior or being called “behavioral”. After all, the symptoms are a behavior that I am failing to control. It exacerbates the false separation between “mental” and “physical” health by re-categorizing them into “behavioral-fault” and “medical-notyour-fault,” which perpetuates the long-term stigma and discrimination towards mental health conditions. That stigma diminishes the recognition of the importance of access to mental health care — of parity — and remains the single most You cannot integrate care significant barrier to people seeking and if the patient is afraid accepting mental health care. And you to disclose the mental cannot integrate care condition that is linked to if the patient is afraid to disclose the mental the medical one. condition that is linked to the medical one. One thing we need to be clear on in embarking on this journey today: it is not just about responding to the need for the medical system to bring mental health more fully on board; it is also about the mental health system – and that of many of my peers’ — lack of trust in what is called – intended as a disparagement — the “medical model.” It is feared and perceived as a bad thing by addressing biology only, not (Continued on page 23)
20 COMMENTARY
Fall 2021
Inpatient Physical Activity by HEIDI HENKEL A friend of mine recently went into the Brattleboro Retreat because he was manic. They gave him drugs — Lithium and Abilify — and did not give him any opportunities for physical activity. He was there for three weeks, completely deprived of any opportunities for physical activity. Physical activity is a basic need, like food and water, for most people. To deny that to people in psychiatric crisis is horrible. In addition, physical activity has a hugely positive effect on mental health and can be a substantial form of treatment for every type of psychiatric issue. In my opinion, physical activity should be a primary form of treatment for mental health as it is for cardiac and orthopedic health. Obviously, for mania, one of the main things that helps is getting a lot of exercise, because then the person can sleep, which interrupts the manic episode. Despite high dosages of these two drugs in the hospital, my friend never slept more than an hour per night. That would be expected when not having any opportunities for physical activity. That is not quality mental health care. That’s garbage mental health
In addition, physical activity has a hugely positive effect on mental health and can be a substantial form of treatment for every type of psychiatric issue care. Quality mental health care would include physical activity. This is not rocket science. It would be easy for the Brattleboro Retreat to incorporate physical activity into their inpatient program. In Keene, NH, right across the river lives the founder of the In-Shape Program, Ken Jue, who is an expert on how to incorporate physical activity into inpatient programs. There’s no lack of information and support in making this happen. There’s a lack of priorities. The reason the Brattleboro Retreat doesn’t offer physical activity to inpatients is negligence, not any legitimate barrier.
That is most likely true of other psychiatric facilities in Vermont. There’s no excuse for not doing it. It’s negligent mental health care, not to. More generally, hospitals need to make serious, genuine efforts to offer treatments other than drugs in their inpatient programs. Their “need” to drug patients, sometimes involuntarily, stems from their choice to neglect to seriously pursue offering other modalities that might create less dependence on psychiatric drugs. Their small pretenses in that direction aren’t adequate. And when physical activity (which is easy to incorporate) isn’t even one of their offerings, it’s evident that there’s no real effort. This needs to change. I have been saying this to numerous legislators for numerous years, and I would like it to be taken seriously. It is a travesty. Here is my message to legislators: If a hospital ever goes to you, the legislators, saying they need forced drugging to be easier, in addition to asking them how much markup they make when they charge insurance for the forced drugs (it’s profit motivated, not care or safety motivated), you can ask them to show you their physical activity program. If they don’t have one, you can say, “talk to me when you do.” A psych hospital that doesn’t even do that doesn’t belong forcing drugs on anyone, ever. It doesn’t even belong being in business. Nutrition is the same story. It’s basic common knowledge, and it’s also been abundantly demonstrated by science that nutrition has a significant effect on mental health. Psych hospitals should be addressing this before they come running to you asking for quicker, easier forced drugging. If they’re not, you can tell them to talk to you when they’re doing it. My recommended law is that by 2024, every psych hospital in Vermont is required to have a physical activity program (which includes the opportunity to get a lot of exercise if desired, and a wide range of intensities of exercise) and a nutrition program (very healthy meals served, including adequate protein, fresh vegetables some of which are green, and omega 3s, and individualized nutrition planning and testing, ex. Vitamin D, magnesium, iron, and niacin testing, to mention a few things that cause serious psych problems if they’re deficient). If they don’t have it, licensing puts them on probation. By 2026, any psych hospital that does not have these programs gets de-licensed, and the state will do something to fix the problem, such as purging all the management, hiring new management, and instituting these programs. In the interim, there could be state money available to help fund starting these programs. Also, there needs to be a law that hospitals are not allowed to bill insurance or CMS more than their cost for drugs and that insurance and CMS contribute to the costs of the exercise and nutrition programs. Make the income tied to the needed programs, not tied to the drug profiteering. I would like to see the needle move on this issue. I am very tired of the psychiatric hospitals making no real effort to reduce drug dependency or give people other recovery paths besides drugs. At the same time, every few years, they lobby for easier and quicker forced drugging. That should be a hard no until they at least implement the basic things that are easy to implement, that are essential to giving people at least some chance of recovery other than just drugging away the “symptoms.” And, not having physical activity opportunities or a nutrition program goes beyond that – it’s a failure to meet basic needs. There is a need to do a better job meeting patients’ basic health needs while inpatient, and there is a need to offer patients other treatments besides drugs for the physiological side of mental health problems. Exercise and nutrition programs in inpatient settings are important toward both of those goals. Michelle Bos-Lun, the representative from my district, says she will co-sponsor any legislation advocates think would be effective and have a good chance of getting passed into law. State representatives: I am calling you to action to address this! Heidi Henkel lives in Brattleboro and frequently advocates with legislators on mental health issues.
Have Your Own Ideas About the System? Share with Your Peers! Send a letter or commentary to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701, or to counterpoint@vermontpsychiatricsurvivors.org.
Self-defense for Seniors
COMMENTARY .
Dance, Martial Arts—anything that will get you moving—and prepared for any possible attack from some predator that thinks the elderly are an easy mark.
by LAURA LEE SAORSA SMITH I am a fourth-degree black-belt in Taekwon-Do, and I have taught selfdefense for over twenty years, so I’m sharing some tips on self-defense for seniors: If someone tries to take you from the front and is choking you, grab their pinkies and bend them backwards as hard as you can and wear steeltoed shoes to kick the daylights out of them. That’s right, and I think there is nothing wrong with wearing steel-toed boots or shoes, of which I have both. I am now fifty-nine and realize I am not getting any younger, although that would be nice. So, knowing that we do not necessarily get any stronger, I do advocate for regular exercise; your biceps and triceps, your core muscles, and your leg muscles. I don’t care how you do it, but I care that you do it under your doctor’s supervision. Dance, Martial Arts—anything that will get you moving— and prepared for any possible attack from some predator that thinks the elderly are an easy mark. If someone puts you in an arm chokehold, use their elbow as leverage, step behind them, pull yourself backward, and get out of it. You might hurt your ears, but rather that than end up dead. Some more, you say? Well, there is always more. If someone has you in a low headlock you can dive between their legs and flip them. That is fun and effective, and your adrenaline will help you have the strength you need, though not an alternative to exercise. Always aim for the soft parts; it works on women too. Go for the side of the knee and force your foot down. Don’t be dainty! There is no room for being a wilting flower; you must muster your inner warrior – we all have one. You may be defeated; you may end up dead anyway, but isn’t it better to go out fighting? I believe so. Some of you have a weapon at your disposal, a cane. The cane can be used like a bat, or you can use the hook end to trip someone up or hook an arm, saving you from harm. Never underestimate the perpetrator but don’t underestimate yourself either. Wheelchairs can be used in self-defense using the leg supports as a weapon by ramming or turning hard into the legs of the perpetrator. Yes, an asp or telescoping baton is one of my weapons of choice. They are great and there are ways to learn how to use them, and with imagination, you can do it on your own, though I recommend classes, a DVD or a book. They are easy to carry on your belt, and they are quick and easy to use; again, go for the throat, all soft parts, and of course, the knees. I don’t necessarily advise everyone to get out there and get a weapon because
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a weapon, if not correctly used, can be used against you, so practice, practice, practice. I also encourage you to use pepper gel spray. It is pretty effective in allowing you to get out of Dodge and get help. Always report an attack or an attempted attack to your local law enforcement. It could save someone else. A stun gun can be an effective tool. As with any weapon, you must train in its use, for it can be taken away from you and used against you. Classes for self-defense are recommended highly. It gets you out so you can socialize and you learn something crucial, how to take care of yourself. The collar bone is fragile and can be broken with the downward force of your fists or open knife hand, and using your weight behind it, use speed and force together with the element of surprise. Classes are best but if you can’t do a class, then get a DVD or book, maybe even more than one. See if there is someone you can work out with. It is helpful to have a real-life person to practice on but be sure to have the right equipment. Like they use in gymnastics, mats are critical when doing flips, so no one gets hurt. The point is to get a feel for self-defense without hurting your partner. Practice punching but again, have the proper equipment, a heavy bag is great, but you still need to tape up your hands or wear boxing gloves or a martial art glove. There are also hand-held pads that your partner can use, and you can trade-off. So, exercise, get up and move to the groove, stay off the ground stay alive! And don’t forget to use those steel-toed boots. Kicking can be quite effective. Let us old farts show these young punks who they are dealing with, be the warrior, be the storm. Your confidence alone will often scare off a potential perpetrator. Be wise. If there is a weapon involved in the attack, wait for a window of opportunity, you can sometimes distract them, and as they look over their shoulder to see the cop that isn’t there or other people, then get the heck out of there. Carry your phone with you everywhere. You can call 911 while on the run. As I said, exercise is a really good idea, and you can make it fun; it doesn’t have to be a drag. Dancing is a big thing nowadays, and I think that is as good an exercise as any if it has a good beat dance to it. In closing, I want to say stay safe out there and don’t think you are helpless. There are always ways to get out of sketchy situations. So, stay strong and prepared, and you will feel better for it. Laura Lee Saorsa Smith frequently writes for the arts section of Counterpoint, and lives in Marshfield.
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COMMENTARY .
Fall 2021
Alternatives Conference Report
By DONNA OLSEN
Donna Olsen attended the virtual Alternatives Conference beginning on July 8, 2021 and she sent Counterpoint some observations from the different presentations. The Conference is hosted by The National Coalition for Mental Health Recovery.
KEYNOTE SPEAKER – CHERENE ALLLEN-CARECO
Cherene Allen-Careco had her first diagnosis when she was 13 years old. At that time, she was told she was told she was too sick to go to college and would spend her life in and out of hospitals. She believed them. They were wrong. They almost killed her in mind, body, and spirit. Cherene survived involuntary commitment during her teen years for many reasons. During that time was she read, Pioneers in Mental Health, by Robin Mckown. She also read texts by authors such as Sally Sigmaer, Dan Fisher, Sherry Mean, and countless others. “You are talking about me. I am you and you are me.” She found her voice and it changed who she was. She was inspired and made a commitment to the values and purpose of the early pioneers in mental health practices. She spent the next 27 years learning the labels of serious to severe and persistent mental illness. She learned a lot as she worked in many organizations, state governments, hospitals, and managed care organizations in various roles. Being connected with psychiatric survivors she learned a lot about healing, wellness, and recovery. In 2016, Cherene started Promise Resource Network (PRN). It is an organization led and staffed by people who are in recovery from labels of mental illness, due to challenges from complex trauma, substance abuse, incarceration, gang involvement, and domestic violence. PRN is a peer support foundation blueprint and social justice is its mission. They want to honor and reclaim justice for the mentally ill. It is based in her home state of North Carolina that is geographically very diverse. They had no coalitions for peer support. There was no leadership.
HELEN “SKIP” SKIPPER
Helen Skipper started her presentation by congratulating all here who were participating and watching this video knowing that at one time they were traumatized by the systems and were reaching out for help. “So give yourselves a round of applause”. “I am a proud black woman and a project engineer.” By that she meant she had been played and traumatized by every system that was designed to help her but did not and only led to another problem. She was played by the system. None of the systems served her. Homelessness led to incarceration led back to homelessness led to drug abuse and to the criminal justice system and back to incarceration. Self-medicating led to her drug addiction that was not addressed by any of these systems. There was no clear path to wellness. To make it out alive she realized she needed assistance. “You have to build resilience. I chose resilience and perseverance. I have a master’s degree in life, a PhD in institutions and a bachelor’s degree in addiction.” Skipper says she made a lot of bad choices, but her life is not defined by those choices. Can’t, don’t, shouldn’t, couldn’t, became do, should, will, and I am. She turned her bad choices into rehabilitation. She stressed that there will always be barriers but encouraged folks to come to the table, learn the criminal justice system, work the system, study and learn, and speak the language.
So they took to social media. They asked the question “Is there a particular passion that you would show up for?” The responses were active and covered four categories.
She is in the Honors Program at Columbia University working on her PhD in Criminology. In high school, she was cracking jokes, now she sits at the front of the class because she cannot miss a word.
The first was Criminal Justice reform. There are 166 members in this coalition. The second was crisis prevention diversion crisis peer support coalition. The third was policy legislation peer support. And the last one was legislation change for peer support coalitions.
“I live and breath life because of my life experiences. Use your voices to advocate for change. No one else has to go what I had to go through.”
PRN formed seven different coalitions with over 600 members banding together. They analyzed ten years of data about involuntary commitment and found 2100 a day over 10 years were involuntarily committed to mental health hospitals. They partnered with public defenders’ offices, emergency departments about being cavity searched and hand cuffed to beds. They introduced four bills regarding non-police response and create peer support along with police. Invest in power sharing with no oppression and more mentoring.
COMMENTARY.
Fall 2021
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CONFERENCE WORKSHOP:
Peer Support for Empowerment and Recovery from Borderline Personality Diagnosis (BPD) EMOTIONS MATTER (emotionsmatterbpd.org) Mission Statement: To support, education and advocate for people impacted by Borderline Personality Disorder (BPD). Emotions Matter strives to create a safe, judgment-free space for people with borderline personality disorder. • We accept that there is a spectrum of experiences within the BPD community. • We honor where people are on the journey, without judgment or assumptions. • We encourage people to define their own path toward recovery. • We speak as experts of our own lived experience, not as medical experts.
HANNAH’S STORY Peer Group Trainer I was 14 when my symptoms came on very intensely. I was on and off medications and in and out of hospitals. I had a hard time relating to people, so I did a lot of isolating of myself. A few of my close friends listened and really tried to understand what I was going through. In 2015 I spent 6 weeks in a treatment center listening to others whose stories were similar to mine. When I returned home, I didn’t feel so alone and isolated. I felt motivated and reached out to a friend for a support group for BPD. She didn’t know of one specifically for BPD but she had heard of a small group starting called Emotions Matter. I started going to this group a few weeks later and I learned so much and felt I found a place where I was understood and belonged.
In 2019 I was stable and a volunteer. I applied to Emotions Matter Peer Facilitator Program Training Program. I have since been a peer group trainer training other volunteers to realize there is hope for them.
RACHEL’S STORY Peer Group Facilitator It took many years of lived experiences for me to come to terms with my diagnosis. I came to Emotions Matter from St. Paul. In 2021, I wanted to train people. I sat in on a few groups and was amazed by what I saw. I was amongst people from all over the country. It was emotional for me. It validated me in knowing she wasn’t alone. There was a community of people who felt what I felt. It helped normalize my experiences. As a peer facilitator I expressed to do my best to validate others feelings and to understand and be aware of lessons learned. To feel connected and to continue to recover with optimism. I will continue to work and keep my interest in hobbies and have a general sense of relief. Above all I will show the power of positive thinking and have a safe place to share.
VPS appreciates Donna’s insightful article on some of the highlights of the Alternatives Conference. VPS board members who also attended the conference commended the virtual meeting option asserting that it allowed for a much more robust and engaging experience.
INTEGRATION COUNCIL • Continued from page 19 the whole person, when experiencing mental distress. The medical model wants to put people on psych drugs in response, they say. What is often forgotten is that this is not just as applied to mental health: it is also the way Western medicine has historically overmedicalized all illnesses. That fails whole-person health for every condition, which is why we need to join the best of both approaches, not just sweep one into the other. We also forget the primary cause: it is driven by consumer demand. Our quick fix society wants to just take a pill, not to work to achieve health – and that applies to mental health consumers and those seeking so-called physical health care. We need the synergy of both, and the timing is good, because changes are already beginning to happen on both sides. The science on the medical side is growing in understanding the social determinants of health and moving away from seeing health only in terms of medical treatment for an illness: treating diabetes is not just about insulin. And mental health recognizes medical science: new knowledge about brain plasticity means the medical model no longer rejects the science of recovery – and the science endorses psychosocial interventions. As a mental health activist once acknowledged: we are not just ephemeral spirits; we do have biology. We must also recognize the chicken and egg dilemma embedded in our task: for example, how can patients trust letting go of a higher level of privacy for their records when stigma and diagnostic overshadowing remains so prevalent, and they fear – legitimately, the research shows us – that a psychiatric label will skew the doctor’s diagnoses and responses to them? Yet, how do medical doctors accept the advocacy for equity and integration if they are blocked from some mental health records? And are we, the mental health consumers, self-stigmatizing when we demand unique accommodation to meet our distinct needs?
I’ve suggested in the past that we think of it like the Black caucus in Congress – and there are many expanded such parallels today. Is maintaining a Black caucus self-segregation? As long as there is no equity, there is a need for a Black caucus. All lives matter, but we must highlight the fact that Black lives are most in jeopardy. It is so important to understand that we are not talking here about integrating care for individual patients. We are asking how we change our systems to make integrated and equitable care the systemic norm. How do we build a shared vision and then commit to each of our roles in making it happen? How do we overcome unconscious bias and change structures to address it – and how do we know that we have done so since it is unconscious? We have to begin by examining ourselves and finding and challenging those biases – on both sides. Then we must ask: How would we create an integrated health care system if we were starting today without our centuries of baggage? Would we even have community mental health centers or a Department of Mental Health? And given that we cannot erase the current or start over, how do we create the path forward within our existing health care system. How do we change the culture that affects our decisions? Given our implicit biases, how do we even know we are heading in the right direction? We wrestle with all of those questions as we work on, and by working on, concrete steps together, here and now. Rep. Anne Donahue is a psychiatric survivor and the Vice-Chair of the House Health Care Committee. She is the former editor of Counterpoint. These comments – presented as part of the introductory of the new Mental Health Integration Council – were in her role as a legislator and not representing Counterpoint or Vermont Psychiatric Survivors.
Tell Your Story. Gain Strength from Sharing. Share your journey to healing: counterpoint@vermontpsychiatricsurvivors.org, or Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701
24 Resources Directory SURVIVOR PEER SERVICES Vermont Psychiatric Survivors Peer Support Groups VPS Peer Support Groups are temporarily suspended during the COVID-19 crisis.
Fall 2021
NATIONAL SUICIDE PREVENTION LIFELINE 800-273-TALK (8255) 24/7 confidential support
VPS is a membership organization providing peer support, outreach, advocacy and education 128 Merchants Row, Suite 606, Rutland, VT 05701 802-775-6834
877-870-HOPE (4673)
Peer Support
Vermont Federation of Families for Children’s Mental Health
www.vermontpsychiatricsurvivors.org WARM LINES VERMONT SUPPORT LINE (STATEWIDE): 833-888-2557; 24 hours, 365 days [833-VT-TALKS] By call or text
PEER PLUS (STATEWIDE):
802-595-0588; 7 days/wk, 6-9 p.m.
MUTUAL SUPPORT NETWORK THE HIVE: info@hivemutualsupport.org www.hivemutualsupport.org 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 (800) 475-4907 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
Some Peer Centers and Recovery Centers may be suspended during the COVID-19 crisis. Call to check on reopening schedules.
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.facebook.com/PathwaysVTCommunityCenter; www.pathwaysvermont.org/what-we-do/ our-programs/pvcc
Vermont Recovery Centers WWW.VTRECOVERYNETWORK.ORG BARRE, Turning Point Center of Central Vermont, 489
N. Main St.; 479-7373; tpccvbarre@gmail.com BENNINGTON, Turning Point Center, 465 Main St; 802442-9700; turningpointbennington@comcast.net
Samaritans Hotline
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
Pride Center of Vermont
LGBTQ Individuals with Disabilities Social and Support: Connections and support around coming out, socializing, employment challenges, safe sex, self-advocacy. During COVID restrictions, call (802) 860-7812
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 877-565-8860.
Crisis Text Line
Around-the-clock help via text: 741741 for a reply explaining the ground rules; message routed to a trained counselor.
LGBTQ Youth Crisis Hotline:
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.
NATIONAL ALLIANCE ON MENTAL ILLNESS-VT (NAMI-VT):
802-876-7949 x101, or 800-639-6480; 600 Blair Park Road, Suite 301, Williston, 05495; www.namivt.org; info@ namivt.org
Connections Peer Support Groups
NAMI is providing its support groups by various alternative means during the pandemic. All meetings are facilitated by trained NAMI peers — individuals with mental health conditions who are at a good place in their recovery journey and want to help other peers get to a good place in their recovery. For more specific information, including on a new Central Vermont group, go to namivt.org/support/ peer-support-groups/
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. 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
24-Hour Crisis Lines: Involuntary Custody Screening
ADDISON COUNTY: Counseling Services of Addison County 802-388-7641
BENNINGTON COUNTY: United Counseling Service, 802442-5491; (Manchester) 802-362-3950
CHITTENDEN COUNTY: Howard Center 802-488-7777 FRANKLIN AND GRAND ISLE COUNTIES: Northwestern Counseling and Support Services, 802-524-6554; 800-834-7793
LAMOILLE COUNTY: Lamoille County Mental Health, Week-
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 Rehabilitation Services, 800-622-4235
Please contact us if your organization’s information changes: counterpoint@vermontpsychiatricsurvivors.org
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; www. turningpointcentervt.org or GaryD@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 Cen-
ter, 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 Spring-
field, 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 ST. JOHNSBURY, Kingdom Recovery Center, 297 Summer St; 802-751-8520; c.boyd@stjkrc.org; j.keough@ stjkrc.org; www.kingdomrecoverycenter.com
WHITE RIVER JUNCTION, Upper Valley Turning Point, 200 Olcott Dr; 802-295-5206; secondwindfound.org; mhelijas@secondwindfound.org
Veterans’ Services 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.
www.MakeTheConnection.net 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.
Vermont Veterans Outreach 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
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