Yale COPE Project

Yale University is conducting a study to understand perceptual experiences like hearing voices, seeing visions, or smelling, tasting, or feeling things that other people don’t, and what makes some people more able to control their experiences. They are currently looking for participants to complete a series of online surveys. You can find out more about the project by visiting the COPE Project website, or reading the FAQ page. From the COPE Project website:

People everywhere have experiences like hearing voices and seeing things other people don’t. Sometimes, these are part of mental illness. Often, however, they occur in healthy individuals. There are usually a few differences between the experiences of people who seek psychiatric care and people who don’t. One difference is the ability to regain empowerment in the distressing life experiences that aren’t working for them–specifically with perceptual experiences. For example, many people say they can schedule times for when their voices (whether they consider them voices, aspects, guides, spirits, etc.) can talk to them. 

Influence over our experiences is complex. It involves neurological, psychological, and social factors. Today, there is no way to measure the ability to influence perceptual experiences. 

We have made the first tool to study these experiences. It will help us design new treatments for individuals to gain empowerment in voice-hearing and other perceptual experiences. But we need your help! 

Participants can be people with experiences of seeing, hearing, or feeling things others might not be who have influence (or control) or people who do not have influence (or control) over these experiences.

Behind the COPE Project is a team of individuals from all different communities–neuroscientists, therapists, mental health professionals, mental health advocates, individuals with lived experiences, and individuals who view their experiences as spiritually oriented. Our group is called the SPIRIT Alliance (SPIRIT meaning the multitude of characteristics that make up an individual). 

Our goal: to understand clinically the extraordinary experiences of real people. 

Share your experiences with us! Understanding how you can influence your perceptual experiences can help those who can’t do it themselves. This can inform new treatments for people who struggle with distressing experiences.

Our goals are:

 To learn from those who hear, see, and feel things others can’t/don’t
• To understand the ways people can control these experiences and their lives
• To create new treatments for those who need them.

Participation:

•  Is online, from the comfort of your own home. 
•  Is paid.
•  Involves taking surveys, playing games, and sharing your story.

Submission: “Hearing Voices: What I Experience,” by Tom

Today I have been hearing voices, and my mind is still, even after all my research and self-reflection, coming up with theories as to where the voices may be coming from and who may be causing them, in a desperate attempt to find the source of the voices and make them stop. No matter how unrealistic or ridiculous I think the theories I come up with are I still believe them to be true. I have to remind myself that there is no evidence or logical reasoning to back these theories up, and that I am just hearing voices again; that there will eventually be an answer as to why I hear them. This whole cycle of becoming distracted and feeling harassed by voices, then having to reject my mind’s theories as to where they are coming from and just accept that I hear them, every single day, becomes exhausting. I find that sharing my experiences with others, whether it be online on a voice hearing website or with people close to me I can trust, helps me both emotionally and psychologically. I hope that writing this essay, and sharing how I hear voices, helps someone who is going through a similar situation.

–“Hearing Voices: What I Experience,” by Tom (excerpt)

Those of us who hear voices often struggle to make sense of the experience. Beyond the fear and confusion we may feel from the voices themselves, it can be difficult to figure out the “right” way of thinking about the experience. Sometimes, we feel torn between competing explanations – or unable to find any satisfactory explanation at all. In this submission, Tom describes his own process of reflection and how he’s forged an understanding of his voices. Tom considers (and dismisses) many different possibilities with care and curiosity, ultimately building a tentative case for the root causes of his experiences. As Tom reminds us in this thorough and insightful essay, having the space to fully explore the personal significance of our experiences is invaluable.

Continue reading “Submission: “Hearing Voices: What I Experience,” by Tom”

Webinar: An Overview of Positive Change and Post-traumatic Growth Following an Episode of Psychosis

Here is a free recorded webinar from the Mental Health Technology Transfer Center Network discussing ways in which people may change in positive ways after experiencing psychosis. The webinar also discusses other, non-medical ways of understanding experiences like voices and visions and touches on the Hearing Voices Movement, as well as the psychiatric survivor movement. The presenters emphasize the diversity of experiences and the importance of making space for positive as well as negative feelings about them.

Statement on the BCCDC’s findings on mortality during the 2021 heat dome

Content warning: discussion of ableism and health inequality

The Tyee recently published a summary of a BC Centre for Disease Control Environmental Health Services presentation (viewable here) analyzing deaths that occurred this summer during the catastrophic heat dome. The presentation concluded that “people with schizophrenia were at four times higher risk [of death] during the heat dome” – above and beyond people living with cardiovascular conditions, Alzheimer’s, or dementia. This finding is tragic, infuriating, and unacceptable. Unfortunately, for some of us who have been diagnosed with schizophrenia, it may not be surprising. People diagnosed with schizophrenia experience high rates of poverty, social isolation, lack of access to medical care, chronic physical illness, interpersonal violence, and other factors that can lead to worse health outcomes, including shorter life expectancy. This is not a result of the individual experiences (e.g. hearing voices) leading to diagnosis. It is a social problem resulting from discrimination and deep inequality. This is a failure of access: to social support, to safe and trustworthy medical care, to proper housing to rest in, to green spaces to cool off. It doesn’t have to be this way.

As the climate crisis progresses, the impacts will be felt disproportionately by the most marginalized in society, including people with psychosocial disabilities, Mad people, voice-hearers, and others. Responding to the challenges posed by extreme weather is a mental health and disability justice issue, and will require building strong communities. Together, we’re resilient. Please look out for one another.

During the heat dome, one volunteer-run project that helped to distribute water and cold drinks to those in need around the Lower Mainland was the Vancouver Community Fridge Project. If you’re interested in learning more about the project or getting involved, click here.

Submission: Three artworks by Joan

Abstract Painting, n.d.
Acrylic

Today’s blog post features three artworks by Joan, who has lived in the Comox Valley for the past two years and finds creative practice to be a key part of mental health. For Joan, self-expression through art is valuable – but so is the way it connects us to others through a sense of recognition and mutual understanding. Joan writes, “To me altered states, hearing voices, visions… have much more purpose than a diagnostic label.”

These three works evoke a stark and powerful sense of place. As the viewer (or listener), you are transported for a moment to another world: one that is abstracted, shattered, or out on the open sea. At the same time, Joan delivers a message of hope: “I am up. I am breathing. The sun isn’t up yet, but I’m sure it will rise also.”

Continue reading “Submission: Three artworks by Joan”

Submission: “Experiences Hearing Voices,” by Tom

In this submission, Tom writes in to share some of his personal experiences with hearing voices, as well as the strategies that help him to cope with and challenge the voices. Knowing that others have gone through similar things – and found ways to live well with their experiences – can be a powerful source of hope. As Tom puts it,

I hope what I shared about my experience hearing voices will help someone, as it helps me to share my experience with others, and hopefully someone else who is struggling with hearing voices everyday can relate to what I’m going through.

Read on for Tom’s personal story of living with voices, the struggles he’s encountered, and techniques that have helped him to take back control.

Continue reading “Submission: “Experiences Hearing Voices,” by Tom”

National Day for Truth and Reconciliation

I’d like to acknowledge today as a day of reflection and mourning, while also recognizing that, because National Day for Truth and Reconciliation is not a statutory holiday in BC, many people haven’t been able to take the time off work today to grieve for their families and communities.

The ongoing legacies of colonization, occupation, cultural genocide, and intergenerational trauma are deeply intertwined with health and wellbeing – emotional, physical, and spiritual. Understanding the histories and present day realities of the land we live on and the communities we live in is an important part of understanding ourselves, including, for many people, our experiences with voices and visions.

If, like me, you’re a settler on the land where you currently live, I’d like to extend a few opportunities for learning and giving today. One place to start is by making a financial contribution to an Indigenous-led charitable organization: https://www.onedayspay.ca/

You can also view the ODP guide to deeper engagement, which has a list of questions to ask yourself as a starting point to learn more about the land you’re on, the communities around you, the histories you share, and your relationship to settlement.

If you’re not sure whose territory you’re on, some websites that might help as a starting point include:

If you haven’t read the Truth and Reconciliation Commission of Canada’s Calls to Action, you can find them here: https://www2.gov.bc.ca/assets/gov/british-columbians-our-governments/indigenous-people/aboriginal-peoples-documents/calls_to_action_english2.pdf

If you aren’t familiar with the United Nation’s Declaration on the Rights of Indigenous Peoples, you can find a guide to understanding it here: https://www.indigenousbar.ca/pdf/undrip_handbook.pdf

You can watch (live or recorded) video events streamed by the National Centre for Truth and Reconciliation here: https://nctr.ca/education/trw/general-public-schedule/

I hope everyone is able to reflect and/or act in whatever ways feel right, and I hope the rest of today is as gentle as possible for everyone who’s struggling. If you’re Indigenous and in need of support, you can call the following crisis line numbers 24/7:

New Intervoice website and BC Hearing Voices Network updates

Intervoice website and World Hearing Voices Congress

Exciting news! Intervoice, the umbrella organization which connects local Hearing Voices networks around the globe, has launched its new website. You can check it out here: https://www.intervoiceonline.org/ The Intervoice website compiles news, resources, and research on the topic of hearing voices in an accessible, open-ended format, as well as a directory of Hearing Voices networks around the world. Intervoice also recently hosted the (virtual) 12th annual World Hearing Voices Congress in Cork, Ireland, where myself (Rory Higgs) and Anne Liao of the BC Hearing Voices Network were grateful to have the opportunity to speak about our vision for community- and rights-based approaches to voice hearing. Recordings from the Congress should be available online shortly.

BC Hearing Voices Network updates

We are hoping to restart the Hearing Voices Study Club, a discussion group focused on articles, research, and personal stories related to the topic of hearing voices (potentially in a virtual, province-wide format). If you’re interested in receiving Study Club updates, please contact admin@bchvn.ca. We will also be introducing regular province-wide virtual meetings to support group facilitators and organizers. If you’re considering starting a group locally and are interested in attending an upcoming meeting, please contact admin@bchvn.ca for more information!

Upcoming webinar: Hearing Voices: The Value of “Experts-by-Experience”

Upcoming webinar with lived experience expert Dmitriy Gutkovich taking place Thursday, July 22nd:

“In this webinar, Dmitriy Gutkovich will present on how lived experience is reshaping support and strategy in the hearing voices community.

Major topics will include a brief history of the hearing voices movement, including its struggles from a social justice perspective. Dmitriy will address frequent voice-hearing challenges including belief structures, attention, hostility, isolation, and relationships; and how community solutions have helped impact what is a fundamentally individual experience. He will then discuss more recent research, and how social and individual perspectives on hearing voices can impact quality-of-life. Finally, he will conclude with a conversation on the challenges for building a knowledge base for lived experience solutions, unifying a hearing voices community, and changing the public narrative of stigma and discrimination on the experience.

In addition to 11 years of personal lived experience, Dmitriy has earned leadership roles in nonprofits including Hearing Voices Network NYC, Hearing Voices Network USA, ISPS-US, and the New York City Peer Workforce Coalition. He is the recently published author of “Life with Voices: A Guide for Harmony” and collaborates as a project partner for Yale’s Cope Project. He has also frequently appeared on podcasts and webinars, championing the role for lived experience in the national conversation.”

Admission is by donation, and you can register for free using the discount code “Freebie”. Register here: https://www.eventbrite.com/e/hearing-voices-the-value-of-experts-by-experience-tickets-161228339303

 

July 8th North Shore Group Cancellation

Hi everyone, apologies to those who were hoping to attend the North Vancouver Voices & Visions support group today (July 8th). The group has been cancelled for this evening. The next session will take place on the 4th Thursday of the month as usual, on July 22nd. We apologize for the inconvenience and look forward to seeing you at the next session!

2021 World Hearing Voices Congress: Update and Call for Submissions

The 2021 World Hearing Voices Congress will be taking place September 1st-3rd in Cork, Ireland, with a hybrid virtual/in-person format. The theme of this year’s Congress is “Solidarity in Times of Adversity: The Global Voice Hearing Community Reconnecting”. The conference organizers write:

This year’s Congress will create spaces for voice hearers, family members, carers, practitioners, academics, and all those interested in the principles and values of the International Hearing Voices Movement, to connect and/or reconnect with one another in a post-pandemic world, either in person in Cork, Ireland or online across the globe. Drawing on two ancient Irish traditions, the Congress organisers aim to provide a platform (ardán) to focus on the ways in which many voices can work together, supporting each other in difficult times (meitheal).

*Ardán (pronounced ar-dawn) is an Irish word meaning platform, stage, but it is also used in the context of ‘raising one spirits’!

*Meitheal (pronounced meh-hill) is the Irish expression of the ancient and universal appliance of cooperation to social need, referring to the co-operative labour system in Ireland where neighbours help each other in turn with farming work, such as harvesting crops. It establishes community unity through cooperative work and mutually reciprocal support.

Online registration for both in-person and virtual tickets is now open: click here.

The call for papers, presentations, workshops, and performances is also now open (deadline for submissions is July 30th): click here.

To learn more, visit the conference information page on the Intervoice website, or check out Hearing Voices Network Ireland!

Statement on the detection of unmarked graves at former residential school sites

Content warning: discussion of anti-Indigenous racism, genocide

If you are in need of support, please call:

  • The National Indian Residential School Crisis Line: 1-866-925-4419
  • KUU-US Crisis Line: 1-800-588-8717
  • Tsow-Tun-Le-Lum Society toll-free line: 1-888-403-3123; main office 250-390-3123
  • Indian Residential Schools Survivors Society main office 604-985-4464; toll-free 1-800-721-0066

Over the last several weeks, following the detection of 215 unmarked graves at the site of the former Kamloops Indian Residential School, over 1300 unmarked graves have been located at 6 residential school sites across Canada. Today, Cowessess First Nation announced the detection of 751 unmarked graves near the former Marieval Indian Residential School. It is important to note that the knowledge that Indigenous children were killed at residential schools – by neglect and abuse, and as an act of cultural genocide – is not new. Indigenous survivors and their communities have testified for years about the violence of residential schools, and the Truth and Reconciliation Commission of Canada’s final 2015 report estimated thousands of deaths of Indigenous children at residential schools, many of them whose names were not recorded. Nevertheless, the grief and horror of having these and other deaths confirmed is immense.

The BCHVN recognizes this is an enormously difficult time for many. We recognize that words alone cannot ease the suffering of the past or the present. We recognize that distress is rational response to the violence of colonization – including not only the traumatic legacy of the residential school system, but the ongoing occupation of Indigenous lands and disenfranchisement and criminalization of Indigenous communities. As a grassroots network supporting people who hear voices, see visions, experience extreme states, or who have other unusual sensory experiences, we believe in the importance of understanding mental and emotional health within the context of people’s lives. This includes reckoning with Canada’s colonial past and present.

We encourage non-Indigenous readers to review the findings of the Truth and Reconciliation Commission of Canada’s final report, linked above. We also encourage you to review the TRC’s Calls to Action report to learn more about what steps you can take towards justice. If you are able, we also encourage you to donate directly to Indigenous-led organizations and initiatives. You can donate to the Indian Residential School Survivors Society here. You can browse a list of Indigenous organizations in BC here.

Call for proposals: ISPS-US Virtual Conference

The call for proposals for the International Society for Psychological and Social Approaches to Psychosis US Chapter’s upcoming virtual conference is now open! The conference will take place November 5-7 and the theme will be “Moving Toward Shared Understandings in Psychosis and Extreme States: Professional, Individual, and Family Perspectives.” Proposals are due by July 5th. For more information, visit the ISPS-US website.

From the ISPS-US website:

Psychosis and extreme states are complex, multifaceted phenomena. Mainstream mental health care in the United States has historically presented a narrow view of both root causes and treatments for the distressing symptoms associated with psychosis, viewing these experiences from a purely bio-medical framework. However, scientific advances over the past decades, and greater awareness of social, cultural, and societal influences on mental health have opened up opportunities to shift the conversation toward more humanistic, person-centered understandings. Thanks to the contributions of people with lived experience, family members, and enlightened practitioners, many of the experiences associated with psychosis are now understood as ways in which the human mind and spirit respond to confusing, challenging, and often difficult environments and relationships. While much progress has been made, much work remains to be done.

Join ISPS-US at our 2021 Conference and Annual Meeting as we consider the progress that can be made when multiple perspectives are honored in the treatment and understanding of psychosis.

We welcome presentations that examine and build upon rich collaborations between people with lived experience, family members, researchers, and clinicians across theory, practice, and innovation. We especially encourage presentations that acknowledge and address the additional burdens faced by people of color whose efforts simply to live in an increasingly hostile world can lead to psychosis and extreme states. Join us as we seek to reimagine a future that offers greater hope, understanding, and possibility for all people who experience and struggle with extreme states.

This year we plan to include an interactive Creative Healing Space to present an array of therapeutic and creative arts modalities used for treatment, and as forms of self-expression that provide connection, comfort, joy, and healing. These can include origami, visual art, poetry, photography, music, dance, spoken word, and more. This Creative Healing Space was inspired by the ISPS International Congress, to be held in Perugia, Italy in September 2022. With permission, we will take these submissions with us to Perugia next year.

Chilliwack group update

The Chilliwack Hearing Voices group will now be hosted by Communitas Peer Support and will be held over Zoom every Monday at 6 pm. Anyone in BC is welcome to attend, but people in the Fraser Valley region are particularly encouraged to check out the group! For more information, please visit the Communitas website here: https://peersupportcsc.com/service/hearing-voices/

As a reminder, if you’re unsure of what to expect at Hearing Voices support groups or whether they’re right for you, an information session and community roundtable will be taking place over Zoom tomorrow, May 6th, from 5-6 pm (PST).

We hope to see you there!