A role for lived experience mental health leadership in the age of Covid-19

Louise Byrne

Editorial published on May 23, 2020 in the Journal of Mental Health by Louise Byrne and Til Wykes.
(Excerpt follows.)

In 2020 an invisible assassin has swept across the world, creating chaos, confusion and uncertainty. Covid 19 has taken many people’s health, some people’s lives and the lives of loved ones. It has destroyed livelihoods and put the financial futures of billions at risk. We are helpless, there is nothing to fight back with. We are trapped, we have to stay in our homes. We are physically isolated, our usual freedoms and way of life suspended. As a result, our ability to enact fight or flight is inhibited, increasing the likelihood of lasting impacts on mental wellbeing (van der Kolk, 2014). Life as we know it, at least for a time, has changed so significantly we are reimagining our futures in a variety of ways, with no idea what’s really in store for us. We are collectively holding our breath, fearing the worst and hoping for the best. Never has there been a greater opportunity to stop pathologising the emotional experiences of human beings and start connecting over commonality, sharing stories and strategies to collectively work our way forward. As a global community, we are all engaging with personal recovery on some level and trying to create a new life, with meaning and hope, beyond the effects of Covid 19. At a time when there is a global mental health crisis, the lived experience community has answers that are highly appropriate to the trauma induced situation we’re all facing.

As the prevalence of lived experience/service user/peer/survivor/Mad perspectives have grown in recent years, so recognition of the potential benefits of lived experience roles is growing. There are examples of lived experience work being embraced by organisations and enabled to contribute to systems transformation (Jackson & Fong, 2017). However, instead of welcoming the hands-on, been-there-done-that perspective lived experience brings, the established medical paradigm largely continues to resist the involvement of lived experience, with considerable push back and unwillingness to engage still occurring (Happell et al., 2015; Jones
et al., 2020). There are a number of misconceptions or beliefs underpinning this unwillingness.

(View full article on the Journal of Mental Health)

May is Mental Health Month – Part 2

May Is For EVERYONE. (May is Mental Health Month Part Two.) by Howard Diamond

Yes, May is Mental Health Month, but is more than that. Thirty-one days in May and many other interesting events happen yearly. Does this mean I am going to mention each and every one? Can we try to imagine this, would this be a great idea?

Of course not, I have better things to do, say and write.

May I? May I? Well, let us proceed. A few days ago on the 15 May, I had my birthday. No applause or congratulations necessary. In fact, I spoke with no one and I received but one card. For me, it was another day to spend alone. Since this is a common occurrence, it makes me sad for a moment and then I replace the thought to an even happier in my thought process.

During my  years of therapy, I learned a technique called, Cognitive Behavioral Therapy (CBT). Simply put, it focuses on changing negative thoughts that can contribute to and worsen motional difficulties. CBT is one of several ideas that helped me on my road to recovery.  Although my thoughts are clearer now, I am still on the road. Who of you out there, want to join me on this road? Anyone, Anyone, I’m waiting…

This excursion is long and painful. Each and every journey begins with one step. Anyone, I’m still waiting … not for long, Okay I want to move ahead now. Remember, CBT assisted me, does not mean it will do the same for you. We all take our trip differently but our lives intersect and continue together. Look out, it might and can bite us, no pain, no gain. Chin up, (but not too much) and focus on what is up ahead, (but not too far) and accomplish this by following this one step at a time.

Right foot, left foot, right foot, left foot and repeat. Does this sound familiar? I know, I know! This is the walk used by The Armed Forces. This year on 25 May it is going to be Memorial Day which commemorates those who died in Military Service to and for THE UNITED STATES OF AMERICA.  

remembrance day

Due to COVID19, this means more than ever so for this I salute ALL individuals who serve. THANK YOU!

It appears that Mental Health Month is not the only event in May. Most importantly, like I wrote previously, Mental Health is not only in May, but during every month of every year. So take care of oneself, physically and mentally, always. It is a positive way to look ahead in our journey to recovery in our lives. See you in the newsletter.

Howard, New York State Certified Peer Specialist from Long Island.

May is Mental Health Month

May Is Here For Everyone                                               by HOWARD  DIAMOND

MAY DAY! MAY DAY! Of course, I am not abandoning ship. What I am about to say, May is Mental Health Month. Now it is our time to be together, apart. Just as The Turtles sang, “Happy Together “. Although, this concept is quite difficult, we must do this for both our Mental Health and our Physical Health.

 

In an Army Motto, it is said, “Be all that you can be”. This encompass both togetherness and individuality. Many Peer Specialists like myself, attempt to get others to empower each person one at a time. Ultimately this is helpful in obtaining the greater good for ALL people. “Day By Day”, sung in the musical Godspell, we as Peer Specialists are trying to get better and more  respect in the workforce and in society.

 

What is respect? Not only is it a song by Aretha Franklin, but one mantra by the peer movement. RESPECT is a feeling of deep admiration for someone or something. Remember, respect is earned and is never given. But, you must give  respect to receive respect. Professionals and Peers must do this together as one. Wow, is that what Ms. Franklin meant all along with her song lyrics? Let us ponder?

 

OKAY, stop pondering and read on. We as people must unite to achieve an everlasting existence.  Yes, yes, as performed my many artists, “PEACE, LOVE AND UNDERSTANDING for all. May is Mental Health Month, but this is applicable each and every month, all the years ahead and beyond. Please, no exceptions. See you in the News (Blog).

 

HOWARD,  Certified Peer Specialist from Long Island

Essential Workers – Share Your Stories

City Voices

Open Letter to “Essential Workers”

First and foremost, if you are reading this, we want you to know that your efforts have not been in vain. In our efforts to honor your work, we at City Voices would like to invite you to share your story…

From the frontlines, to the inner turmoil, we want the world to know your truth. This includes you, whether you are a nurse working strenuous hours servicing patients, someone in the social services or officers trying to uphold the law..

We at City Voices want you to know that you are not alone. We also want others to know how far you put yourself “out there” as an essential worker and how far you are willing to go in order to perform your chosen duty for the greater good.

As we all struggle to adapt to the effects of COVID-19, we must always remember those who go above and beyond to ensure that the motion of society continues to move forward with dignity, no matter the sacrifice or struggle.

This is exactly why City Voices welcomes the loved ones of essential workers to share their experiences, thoughts, and concerns for our loved ones who are selflessly pushing forward, as well.

For those not considered “essential” by the government, we here at City Voices understand what is essential is really a loose and ambiguous term requiring the individual to define it for him or herself experiencing it.

Remote workers: how are you adapting to telehealth communications? 

  • What are some of the differences in providing services in person vs remotely?
  • What are some gaps in care that may have been forced to the service due to our current pandemic?

Whether you have been tech savvy prior to COVID-19 or are now learning to adapt to tech, your story, truth, and experience are what we are seeking for the next issue of City Voices.

We truly want to know what it’s been like for you to push forward and continue the big fight to ensure the care, compassion, and treatment for those you care for or the reasons you may have chosen to step down. Your story means the world to us and can help others who may feel left out or are still unable to grasp the chaos of this pandemic.

Your story can do more than bring you praise and honor. It can save lives and restore hope.

Please consider the following questions:

  1. How have you broken free from isolation?
  2. How do you envision the process of reconnecting with society on new terms? If this is something you have already adapted to, what has it been like for you?
  3. What does life in isolation mean to you? Whether it be by choice or obligation. How has COVID-19 and your duties as an essential worker impacted your profession?
  4. How have you practiced self-care while caring for others?
  5. If you have chosen to step down as an essential worker…why?
  6. How have you balanced essential work and family care?
  7. Do you have any advice, recommendations, or warnings for other essential workers or non-essential workers?
  8. What effect has COVID-19 had on you physically & mentally?
  9. How do you practice, or promote self-care?
  10. Are you aware of just  how important, valuable, and appreciated you are?

Feel free to use these questions as a guiding point but be free to express yourself as you see fit.

City Voices asks for your help to not only reward yourself for your good deeds, but also to help others who may be losing their own internal battle. This is a time to come and stand together as we join forces, stand our ground and push back against that which wishes to destroy humanity.

All submissions can be anonymous or self-disclosed.

Article must be related to mental or behavioral health, a diagnosis, condition, experience, coping abilities or lack thereof, strategies, COVID-19, remote work or loss of belonging due to the disruption of society as we have come to know and understand it prior to COVID-19.

Any submissions for the City Voices newspaper must be free of derogatory language, political outlash, or religious assertions.

Submissions should be sent directly to CITYVOICES1995@GMAIL.COM and VAM1990@icloud.com.

We can also schedule online interviews.

City Voices writer’s guidelines are available on the website: CITYVOICESONLINE.ORG/SUBMIT

Not Fragile

Survivor-Led Mutual Aid Projects Flourish in a Time of Crisis

An article by Leah Harris (posted in MIA on March 30, 2020) / Re-posted 4/2/2020.

During the current coronavirus pandemic, the practice of mutual aid—defined broadly as the ways that people join together to meet one another’s needs for survival and relationship—has reached the mainstream. Yet often missing from major media coverage of mutual aid is any acknowledgment of its roots in movements led by marginalized people, including Black and Brown people, disabled people, mad people, and psychiatric survivors.

People relegated to the margins of society have long known that they can’t necessarily depend on systems for their survival. For example, Mutual Aid Disaster Relief emerged from New Orleans communities of color forgotten in the wake of Hurricane Katrina, when public authorities responded to demands for help with automatic rifles.

Leah Harris

As activist Reyna Crow from Duluth, Minnesota told Mad in America, “I have learned not through this, but previous crises that have affected me similarly for protracted periods of time, that it is those who have already been there I can turn to for real support. Systems aren’t effective or safe in my case. Community is the best way to try to ensure we all get our basic needs met.”

(Continue on the MIA site)

 

 

“Couch Contemplations” …By Bluebird

 

I am writing this from my “couch“ but by no means am I advocating for it to be the place for me (or you) to stay for long periods of time. I am concerned with the new every-day- now- requirements coming from all forms of government to stay put inside and to keep a safe distance—(six feet)—from others, can become a real problem especially for those of us who experience depression. Precautions narrowly defined are not considering the possibilities of secondary consequences.

 

I am not pretending to be an expert, but feel justified to recommend that we all need fresh air, to go outside for daily walks or to sit quietly in sunshine with a good book in hand, saying hello to others and stopping to talk with them at a safe distance, (not sure six feet).

 

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Point in hand, I took a walk this morning, stopping at Einstein’s Bagels for a Lox and cream cheese bagel and coffee. Few people were out but sitting at the outdoor table was friend Ella who lives in my building and her dog Lexi.  Ella has an illustrious history as a person with a Ph.D. who once raised money for wells for people in Africa. She looks like someone you could write a beautiful story about. When I sat down with her we both agreed that taking walks is important.

 

“These people who are choosing to stay in their apartments and not go out are just a bit cuckoo,” twirling her hand around her ear. (Not informed of our improved vocabulary you understand!) Later we walked to the Memorial Park across the street and met with the friendly dog walkers who meet up daily. None of them felt the need to isolate either, one of them with a story of a neighbor who is agoraphobic and never goes out stating humorously that her disorder is now the new “normal.”

 

It was fine to get out but there were differences noted: fewer people walking, fewer people in the park which will not close as there is no way to close it, thank goodness!, fewer people getting coffee, even at Starbucks. Forever available, the river remained the same; strong, reliable and calming!  I will continue writing every day with some nuggets of information for you to ponder over.

 

May I suggest that you go outside for a walk, sit somewhere enjoying watching new spring flowers and birds chirping with paper and pen for writing or markers for drawing.  Be creative.

 

What other thoughts, ideas, suggestions do you have and want to share?

About Gayle Bluebird, aka “Bluebird”

Bluebird has been a pioneer working to change the culture of the mental health system for many years in different parts of the country. She is known for “Altered States of the Arts,” and promoting the arts to heal from trauma and emotional abuse. Over the years she has formed national networks of artists, writers, and performers, networks of artists, writers, and performers who tell their mental health stories through art. She has also received many awards, including the prestigious “Voice Award” from the Substance Abuse and Mental Health Administration (SAMHSA) in 2010. In her last position, she was the Director of Peer Services in the state of Delaware, where she helped to develop and implement several peer programs, including a successful arts center, The Creative Vision Factory. Now retired, she spends much of her time writing daily poems on Facebook. She created a curriculum and soon to be launched Elective course for the Academy of Peer Services called, “Transforming Lives through the Arts.”
She has also written a book called Tootles’ Tails, that contains stories written in the voice of her dog, Tootles, soon to be published. You can find her on Facebook or email her at gaylebluebird1943@gmail.com.

Peer Support Approaches for Responding to Fear

Many in our community may be feeling extra stress with all of the talk about the Coronavirus outbreak, officially now called COVID-19. As peer supporters, we are in a position to support others around their own fears as well as the general fear in our communities.

fear

Encouraging people to discuss their fears is a great practice. Our discussions can provide accurate information, and it can help others find accurate information from appropriate sources. In this way, people can decide what they need to do to in order to minimize their risk of becoming infected, and it also can have their minds put at ease if they realize that they have already taken necessary precautions. We can respond to fear with compassion and also offer constructive support.

compassion

Fear can be a lifesaver that protects us from real danger and spurs us toward positive action, but it also has the power to deeply disturb and limit us. Worst of all, fear can erode our trust in ourselves, in the goodness of others, and the joy in living.

Constructive responses to fear:

    • Put fear into perspective – our perception of fear is often increased by what we see, hear, and read in the media. It is important for us to become knowledgeable consumers of information, and be able to differentiate between accurate news and exaggerated, scary sound bites of skewed information and wrongly-projected statistics. Staying informed and choosing reliable resources, such as the Centers for Disease Control and the World Health Organization will help.Resource link: https://www.cdc.gov/coronavirus/2019-ncov/
    • Media breaks – the key is to stay informed without being overwhelmed by a constant flow of upsetting information. Catch up on the news at a time of day you feel most rested, relaxed, and supported. Watch the news with a supportive friend.
    • Interrupt fear – interrupting fear can limit its power. When we are fearful we may also feel out of control. Doing usual tasks such as washing dishes, exercising, or talking with friends reminds us that we can be fearful but still make meaningful choices. Each task accomplished lessens fear’s grip and restores our confidence and trust that we can cope with life’s circumstances.
    • Use all of our senses – when fear takes hold of our thoughts, small concerns can grow large and take over. Awareness of all five senses can help us be in the present moment instead of losing ourselves to the “what-ifs” which can be circling around our brains. Breathing exercises, mindfulness routines, coloring, cooking, and practicing other ways of being in the “here and now” with the help of our senses is helpful.
    • Find your joy – turning to joy does not mean ignoring your own suffering or the suffering in the world. Finding your joy means being willing to remember that connection to others is one of the most important ways of restoring life’s meaning.

joy

James Baraz sums it up this way in his book, Awakening Joy, “Focusing only on the terrible things can lead us to pull back from life and fall into despair. Staying in touch with the well of joy within us enables us to be part of the solution rather than the problem.”

What helpful strategies do you have that help you to calm your fears?

Martha Barbone
Interim Director of Operations
National Association of Peer Supporters, Inc (iNAPS)
http://www.peersupportworks.org

March by Howard Diamond

March right in. Yes, March right in. If you choose, April left out. Of course, I realize that is quite a silly statement. They say in baseball, there is a position called left out, but that is not a fact but is more than having a feeling. It is way we can discount feelings.

For me,  I am trying to separate the facts from  what their insides are telling them. Maybe brain versus heart. Someone must have a better idea. Does anyone have one, I am willing to listen?

During last month, there is a day where feelings get muddled with facts. On February 14, it was Valentine’s Day. For many of us, it is a day set aside for lovers who spend special time together. When my significant other, Maureen was alive, she said February 14, was a day like another and we are supposed to love each other every day. 

Consequently,  for the years Maureen and I were together, (12 not enough), no gifts, no candy and no cards were exchanged on February 14. Also, no flowers were given to each other, it was just an ordinary day, just to be together. Think about this, no chocolate nor sweets.  So is this feelings or facts? Do you agree, or disagree? Decide what might be best for you. Remember I am not here to decide anyone’s ultimate happiness. 

Now we March from February to another exciting month. Awaiting the new season, William Shakespeare wrote , “Beware the Ides of March”. Another famous statement was, March comes in like a lion and leaves like a lamb”.

Are these truthful ramblings of writers to entice what goes on around us all? Both lines are feelings and not based in facts. Also, coming in March is the beginning of Spring. Although, .so far this winter has been devoid of snow, winter will be ending. That is a fact.

GREAT and FANTASTIC  are my feelings and what I  wish for is no snow ever, On the other side if one goes skiing, they can take snow with them for a white time. Soon, there will be, GREEN GRASS AND NEW LEAVES, REDBIRDS AND CARDINALS SINGING and hopefully, BLUE SKIES AND BLUE WATER EVERYWHERE to adorn us with their beautyDoes this sound wonderful? Share your thoughts.  Furthermore in Spring, it brings the start of the baseball and must see watching for this writer.  LETS GO YANKEES! LETS GO YANKEES!

[Ed. Note: Thank you Howard! It's great to have you writing and marching with us again!]

City Voices Asks You to Get Involved

By Dan Frey, Director, City Voices, www.cityvoicesonline.org

Anyone can get involved within their community in order to strengthen the abilities of peers in recovery from mental health, or substance use concerns. Building this type of bridge is easier with the support of a mentor.

I had a mentor named Ken Steele who was well known and effective during his time. He was the founder of City Voices, the only newspaper in New York State that provides a platform for peers to share their voice with mental health experiences. In his time, Ken took some heat for the funding he received from a pharmaceutical company and his close relationship to the National Alliance on Mental Illness (NAMI) and Mental Health America (MHA) formerly the National Mental Health Association. However, he always spent the funds on his projects and on people instead of himself.

Ken also founded the Mental Health Voter Empowerment Project, which registered 28,000 people to vote in NYS. His project would have gone national had he not passed away suddenly at the age of 52. To my knowledge no one has taken up the cause of organizing people with mental health diagnoses into a voting bloc since Ken.

Twenty years since Ken died, City Voices is still going and it is gradually working its way back to Ken Steele-levels of distribution. In every issue we include content of value for the peer workforce. We are independent of pharmaceutical companies and raise money for operations from subscriptions, advertising, and donations.

To view the current issue of City Voices newspaper, click here.

In addition to the newspaper, we facilitate, and are working to grow peer-worker support groups, increase our web and social media visibility, and to start a mentoring project.

To view the flyer for Peer Workers United, click here.

All of these projects are volunteer and require a willingness to negotiate, compromise, have empathy and respect for each individual and the collective lived experiences, and, most significantly, teamwork. We do this work because we strive for a world where we feel like we belong and have the right to achieve our bliss.

I really hope our mentoring project takes wing, as mentoring helped me to stay active and engaged. I believe it can have the same impact on someone else. This year I am celebrating 10 years free of institutionalization and I hope to help others stay clear of that too.

Please send me a message if you want to get involved with City Voices: CityVoices1995@gmail.com or visit www.cityvoicesonline.org

The web address may change in time, but the email should remain.

We are seeking volunteers with lived experience in mental health or substance use who can do any of the following: write, edit, mentor, mentee, organize, co-facilitate, sell, share, social media, web design, computer work, speak, or learn. Most work can be done virtually (anywhere), while some work depends on being near New York City.

I look forward to hearing from you.

City Voices newspaper is fiscally sponsored by Baltic Street AEH, the largest peer-run employer of people with lived experiences in NYS.

To learn more about Dan Frey, click here.

Wisdom Within Podcast

New Podcast Series!
Our Guest Blogger, Kathleen Surline, has gone “audio” with her new blog on WisdomWithin: On a mission for good! She’s got the microphone on, got the support dogs, and in a very short time she is already up to a dozen podcast episodes that we thought we would share with you, especially if you like to listen to good wellness tips and ideas. Listen and share with others!

To review an earlier posting by Guest Blogger: Kathleen Surline
Founder, Wisdom Within (https://wisdomwithinweb.wordpress.com)

Of all the profundities that have come to light in the course of my illness, recovery, and even my subsequent choice to become a NY Certified Peer Specialist, one the most perplexing has been disconnection; or perhaps, more accurately, reconnection.

I suppose it goes without saying that most of us experience some manner of disconnection before, during and/or after our mental health diagnoses.  While we are struggling with our symptoms and no one else gets us. While we are are fearing what might really be wrong. While we are sleeping less and less. While we are swimming in that initial sea of uncertainty. We may not feel able to hold a conversation with a friend or loved one; our words don’t work. We may find we are
isolating (such a common occurrence during depressive episodes, etc.); we have a hard time reading with understanding; we feel unable to explain what we are going through, so we may say nothing at all. We don’t go out. We don’t answer the phone. We stop getting online.
Slowly, slowly, through the course of recovery work, we make certain new connections that help our footing. Maybe its a medication regimen that finally seems to help, after months of trial and error and side effect surprises. Maybe it’s a therapist or doctor that we finally feel is the right fit for us. Perhaps we took up writing again, or art, or music, or (name your therapeutic endeavour of choice here). All this helps. But many of us are still very separate from the rest of the world. Some disabled by distance or finance, some by inability to leave their homes to attend support groups, workshops, conferences.

Then, lo and behold, and by whatever manner the opportunity came, we find there is now a connection, a path if you will, in peer support, that can allow us to make lemonade from lemons.

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The Offices for Mental Health and the Academy for Peer Services avail us of the possibility of becoming Certified Peer Specialists in mental health via the online
coursework they’ve so outstandingly developed! To connect with a like-minded group, even if only in spirit. To share what we’ve lived, survived, learned along the way, from our oft times lengthy dance in the darkness. To then take that forward, with shared knowledge and standardized education, in our history, in this new work, in an effort to help the next humans who find themselves at the dance; to encourage wellness, self-advocacy, and hope.  Despite perhaps some sputters and
spurts, we reconnect online to APS coursework and discussion forums, and focus on certification. The sense of accomplishment and affirmation once that certification happens, well, it’s like a rebirth of sorts. Back into the world of the functional, the valued, the accomplished!

Then, we may find, despite all best intention and enthusiasm, that peer support work itself can, at times, leave one feeling disconnected in its own right. Or at the very least, somewhat isolated.

If we are fortunate enough to gain a position in the peer support workforce, then the fellow consumer-survivors we serve may be our most frequent interactions. We are there for them (not the other way around). Its not like we have a support group for Peer Specialists. And the work is not easy; if it were, everyone would do it.

On the other hand, if we are not immediately finding positions in the peer support workforce, then we may again feel isolation and disconnect. Peer support work is evidence-based, yet old stigmas and biased perceptions still serve as roadblocks to our early success in some regions. This frustration could be enough to cause one to give in to the agony of defeat!

But, as Winston Churchill so aptly put it, “never, never, never give up.”

Now, we have APS’ new Virtual Community! What an opportunity! Might it be possible to create new connections with this as a starting point? Could this be one small step, to at least a foothold on the ladder to reconnection? Might we develop online support groups for our peer support workforce? For our new and continuing APS students? The mind boggles in wonder about ways can we look to reconnect our disconnects through this forum, and where that might … connect us to the future.


By Guest Blogger: Kathleen Surline. NY Certified Peer Specialist
Founder, Wisdom Within (https://wisdomwithinweb.wordpress.com)