Comments by Lucinda Jewell

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  • Because some western applications of meditation are done without creating the appropriate “container” for the experience, it does not surprise me that some people experience subjective ‘negative’ sensations. The purpose of meditation practices within the context of spiritual evolution is to transcend the ego (the perceiver of negative interpretations, discomfort, fear, etc.) to experience the Eternal/Infinite Oneness that is the true Self or Source. This is far from “emptying the brain” or mind though both are involved in initializing access to Cosmic Consciousness. If the ego is unprepared for the intensity of energies meditation can create, it’s breaking up can be unnecessarily painful. Too late in the article is this addressed. Subjects are like the unfortunate student of magic in the Sorcerer’s apprentice, conjuring forces s/he has not learned sequentially to master.

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  • Hi Sera–apologies for not being clear. I think we are aligned here.

    Within the peer-led support community of DBSA, the support group model is like AA (without the 12-steps) and purely voluntary, thus unpaid. No curriculum. Discussion in any support group is determined by the needs or interests of the group in the moment. Our national umbrella organization has paid staff to create/maintain the website, develop and deliver programming (like leading Peer Specialist trainings to the public and VA, ostensibly for graduates to be hired and get paid) as well as provide resources, information, etc. We do not support any single system for wellness, though the medical model, alternatives, lifestyle practices, work and career, various therapies, etc are all discussed. Our focus is on self-determination, and that people who have experienced symptoms live a life they love however they define it and however they achieve it.

    Like life, our community is diverse and complex and there is room for everybody who wants to or declares to be a part of it.

    Speaking for myself, I don’t like labels because of the assumptions in the listening of others it can promote. And yet, we do need to have/develop language that captures our lived experience. Personally, my commitment is to create a context and language that transforms how mental health and wellness are viewed, and by example removes the pathologizing of the human condition that seems to be the expanding direction of the medical model. I take meds–in small amounts they work for me, and I know for others, meds are problematic if not detrimental. And, I have strengths and resiliencies that people who have not experienced depression or mania do not have. Focusing on these, and having lifestyle practices and work that I love makes the label of “bipolar” an aside to who I am in the world.

    As for peers being paid or unpaid–organizations like M-Power (and yours?) have paid employess, most of whom have experienced brain symptoms that interfered with their quality of life as they define it. They are putting their lived experience and personal skills (education, work skills, etc.) in service to our community in a variety of ways. I don’t believe that paying someone to be a Peer Specialist necessarily interferes in the “peer to peer” relationship. It all depends on how an individual peer specialist relates to him/herself professionally and in relationship to their clients. It’s no different in any pay-for-service situation. So, as a client, shop around for a person who provides the service you are looking for, and make sure s/he is a fit for you. Sometimes, the relationship may work well at first, but then not. So, keep looking. And Peer Specialists themselves need to know what they are for, and stand for what they provide in the clinical or non-clinical setting. This is new territory and it will take awhile for employers of Peer Specialists to deploy them in a way that makes a difference for clients and the larger therapeutic team in which the peer specialist works.

    Peer Specialists will benefit from forming a professional organization to begin to establish who they are and what they provide in this business setting. Helping profession or not, clinics, hospitals, etc. are still operating within a capitalist model (no judgement, just what is so) and Peer Specialists will need to prove they add value to the business of mental health care as it is set up now. And how Peer Specialists grow in their professional development will not only make a difference in how mental healthcare is practiced, but transform the view of people who have had mental health issues.

    So much more to wrestle with, discuss and ponder. Thank you for your inspiration!

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  • Hear, Hear, Sera–I’m aligned with much of what you say. One issue is that the terminology is muddy and inaccurately used.

    As Chair of the Depression and Bipolar Support Alliance, and director/member of our local DBSA chapter, I beliebe “peer support” should only refer to group support, freely given, without remuneration or coercion, between people of like experiences. Like AA or Al-Anon, this is purely voluntary, and we seem to find relief, sympathy, empathy, friendship and laughter among our fellows.

    As for Peer Specialists, your description of what other mental health workers deem as the peer specialists job made me cringe. DBSA offers one of the few PS training programs recognized by the VA, but we also have issues with the lack of rigor, ongoing CMEs or educational pre-requisites for taking the training at all. We are working on that, but it will take time. Until that rigor is in place, PS will continue to face demeaning conditions in the workplace and the larger culture will continue to devalue and be dismissive of what PS could provide, not only to individuals in crisis or early stages of procovery, but to improving the medical model in general.

    So, it becomes important for us who have experienced mental health symptoms that have diminished our quality of life to take back the conversation for mental health and drive both the conversation and the terminology. Hooray for neurodiversity!–what doesn’t kill us, creates us, and we must be accountable for our lives. If we experience debilitating symptoms often, a WRAP or other such self-planning could be in order. We need to demand that providers/insurers, etc. have wellness as the goal. No one would expect a person who has experienced cancer to settle for a little cancer! Also, to promote a focus on wellness instead of illness–the research coming out of Positive Psychology is helpful here. And we have to demand protocols and practices that put us in charge, from lifestyle choiceslike meditation, yoga, movement and nutrition to Open Dialogue, DBT, CBT and newer therapies that harness the power of our brains to change themselves.

    Personally, I don’t find the labels very useful. They are descriptors that tend to pathologize the human condition, more so–it seems–every time an new issue of the DSM is published. So again, “peers” (for lack of a better term–I too can’t stand consumer… prosumer? client?) must lead the conversation for mental health wellness, define or redefine or invent the terminology so that the contribution of the whole human being erases the limitations others would put upon us. Thank you for your passion and fire!

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  • Thank you, Paul. My beliefs exactly. Though I have fortunately not been abused by the psychiatric system, neurodiversity is all about spiritual awakening. How else is Consciousness/the Oversoul/Brahman/God going to wake us up?

    All the great spiritual teachings share that we are One; Love is what we’re here for (and what we’re here to remember), and that our mind/thoughts are not who we are. Clearly mania is direct access to that experience and it’s a bumpy ride to integrate Cosmic Consciousness into our mortal bodies, but once perceived can never be forgotten.

    Meditation is absolutely one of the best practices for grounding and expanding our spiritual selves so we don’t appear “crazy,”and now has longitudinal scientific studies to prove its efficacy. There are psychiatrists and therapists out there who get the spiritual dimension, but they are not yet the norm.

    Only we can validate ourselves and our experience–inner peace and cosmic joy are not dependent on outer circumstances. The more of us who speak up, the more influence we have to depathologize the invented labels that others would use to box us in, and claim our spiritual inheritance of freedom and Light for the world. As my Teacher says, there are two energies on our planet, fear (contraction) and love (expansive) and we have free will in any moment to choose. Finally, there is no “us” and “them”–we are all “we” as catalysts for one another’s awakening. It is fear that separates us from Ourselves and has us feel alone.

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  • Thank you, Stanley. Tom is a friend, and I admire his work greatly.

    Personally, I don’t think much of mental health care for those who are often or chronically debilitated by their symptoms. HMOs and insurance are not set up for wellness since most have caps/limits on talk therapy, and doctors who don’t bill insurance directly require payment by the client first who must wait for reimbursement. Many people cannot afford to pay $150-$250 upfront, let alone wait for reimbursement so people are effectively priced out of getting the care they need. Mandated healthcare does nothing to address this situation. More later.

    Cheers,
    Lucinda

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  • Labels are what the culture at large understands, though as I use them I am transforming either how we relate to them or relanguaging altogether. I don’t identify with the illness or patient mindset AND I’ve been fortunate never to be hospitalized. Neurodiversity, which the autistic community has promoted, is one I subscribe to for those who have experienced mental health symptoms.

    Thanks for asking,
    Cheers,
    Lucinda

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  • Yes, DBSA has never hidden the fact that it does accept pharma money AND we in no way endorse medication or specific medications for everyone or anyone. Our organization, including staff and board, is required to have 50% of personnel self-identify as having experienced depression and bipolar. We encourage mental health research of all kinds, including alternative and non-medical treatments/management structures.

    Medication is a personal choice, and as any enlightened psychiatrist will tell you, often an imperfect one. For some it doesn’t work at all, or makes matters worse. DBSA uses money from investors, including from individuals, pharma and government contracts, to provide peer-led support groups nationwide, education and resources about mental health, advocate for mental wellness and put peers first in the mental health conversation.

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  • I’m not for or against medication. As all the enlightened psychiatrists I have met concur, they are not optimal. Side effects can be as bad or worse than the conditions; and finding ones that work, if any at all, is more art than science. My reference to Obama was not about universal healthcare–it is still almost useless for people with serious mental health symptoms since too often people have to pay out of pocket first which they cannot afford, let alone wait for the partial reimbursement…–but about Obama’s point of view. Personally, I don’t believe in pathologizing neurological differences, and clearly, when people are in pain or in danger of hurting themselves or others we need effective ways to help them. Lots of work to do! Thanks for writing.

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