I can't quite put on my finger on why it's felt so uncomfortable to post this, but surprised and of course relieved that a few days ago
@LeahJacobsPhD
and I were awarded tenure & promotion to associate professor
@PittSocialwork
. Why uncomfortable...? 🧵 1/x
This is a thread about what it’s like to collaborate on numerous psychosis research projects, global & local in scope, as a researcher with (long term) psychosis. I think most of this is often completely missed by even the most well-intentioned collaborators. 1
1. Survivor's guilt. Success in academia is wildly arbitrary, often cruel, and underwritten by ableist, classist, racist thinking and policy. In particular, I think of my many many disabled friends & comrades who have never had any fair shot at any of it... 2/x
Tomorrow get to do one of the things I personally find most meaningful: a workshop for front-line clinicians/staff on alternative approaches to thinking about & working with psychosis
On a personal note, very pleased to announce I’ve accepted a faculty position
@PittSocialwork
(& hence will be moving to Pittsburgh!) this summer! Grateful to be joining a dept w a deep commitment to racial equity, social justice & community engaged research. 1
Finally get to officially announce our new
@NIMHgov
R01 (MPIs =
@lisabdixon
, the unparalleled Twitterless Howard Goldman & me). Massive mixed methods project designed to understand/improve school/work & disability income trajectories & outcomes in early psychosis
Another piece of ours I care deeply about out today: Lived Experience, Research Leadership, & the Transformation of Mental Health Services: Building a Researcher Pipeline
#PsychServices
(thread).
The very first Director of Disability Services I met with: "schizophrenia? We don't have any students w that here. You should reconsider whether a graduate program is even appropriate for u given a diagnosis this severe..." Left crying, never finished the paperwork. 4/x
There are these times when I hit a certain milestone of "success" (grant award in this case), and some part of me ardently wishes I could email former professors/supervisors. Not the supportive ones, the one's who said really damaging stuff. Like.. Thread.
#TheBarriersWeFace
Psychosis Outside the Box: A User-Led Project to Amplify the Diversity and Richness of Experiences Described as Psychosis | Psychiatric Services. So proud of
@SPagdon
(1st first-authored paper)!
An initial booklet of our (
@SPagdon
&
@BrownMarieC
) Rethink Negative Symptoms project is now posted! Still a relatively small number of contributions, but they're powerful. Check them out and if you want to contribute, please still do!! ()
Post-PhD, there are too many allies & supporters to name, including my anonymous tenure-letter-writers & the many incredible colleagues here
@PittSocialwork
who have reassured me *constantly* over the past year 🙏♥️ 17/end
Really excited to see this team effort out! “Investigating the impact of involuntary hospitalization on youth/young adult trust & help-seeking in pathways to care (thread)
2. Disbelief. For such a long time I've believed I would never get tenure. As I recently posted, a long list of former professors, mentors & supervisors told me just that. The next dozen Tweets bear witness to resulting wounds 3/x
One week into teaching MH policy to some amazing
@PittSocialwork
MSW students, thoughts on pedagogy: (1) disability scholars have said it before but we should assume that all the experiences we’re lecturing on-homelessness, incarceration, ‘SMI’-*are* present in the classroom 1
First, the degree to which expertise over psychosis—what it is, what it means, even what it “feels” like—has been collectively captured by researchers w no direct experience, is staggering. The weight of it all can feel suffocating. 2
Until having personally been made aware of legal threats to a journal in order to force the retraction of work by a disabled scholar I deeply admire, I might not have believed this. The use of legal threats to silence critics should be seen as unacceptable, full stop.
Since some express doubt, to be clear, I wrote this Tweet after personally witnessing the distressing effect of a threat of potential legal action concerning a publication including criticism of some ideas in PTM, made to a female, disabled, long term mental health service user🧵
Curious who all is concerned by the growing use of predictive analytics in mental health services, particularly in the context of risk assessment & triage? (Genuine question.)
Our (
@SPagdon
and my) initial Psychosis Outside the Box (visions, felt presences, alterations of time & space) first person accounts compilation is now available! Download the full report at
Whether the claim is that delusions are “cognitive beliefs”, that psychosis *is* deficit, that there are exactly 12 categories of delusion(s) across the globe: no hint that in & through this capture is enacted a very profound form of violence, of colonization 4
By “weight” I mean the sheer volume of scholarship, the number of experts, the unblinking certainty w/ which clinical trainers explain what psychosis is, the endless recitations of DSM & ICD constructs (I think I hear these in conferences & trainings easily a 100 times a year) 2
Exciting Psychiatric Services news! Keris Myrick
@KerisWithaK
and I will be co-editing a new column on Lived Experience Inclusion & Leadership. Description in thread. Deepest thanks to
@lisabdixon
and the PS team.
Delighted to announce open applications for the
@PittSocialwork
Lived Experience Research Academy (LERA). Summer research devt program for current/recent undergrads & MSW students with lived experience. Details below & key info in 🧵 & huge 🙏 to Dean
@BetsyPitt
1/x
That 1st year my assigned faculty mentor said "It's not that I don't believe people with schizophrenia can be successful [in academia], it's that I don't believe *you* can." Again, so much more implied than said, so definitive, so final 11/x
Really looking forward to this! Upcoming
@philosopher1923
panel webinar
“What is Mental Illness?”
Justin Garson, Nev Jones, and Marco Ramos in conversation with Kendall Atterbury. For more info or to register navigate to
They are real in the sense that they fundamentally re-write people’s lives, spin them off into poverty, incarceration, alienation. They are real in the degree to which they actually disenfranchise & subjugate. But this is not seen or said. 10
I swear this is not a “sub-tweet” or criticism of anyone in particular but rather a general observation of something particularly alienating about
#SIRS
conference tweets featuring almost no one with direct experience, especially when we’re talking phenomenology 🧵
Let me stress how painful this is—unless we seal ourselves off from it. If we allow ourselves to experience it for what is it is, it is deeply wounding. Alienation & estrangement from the self, self-knowledge, collective knowledge & identity 7
I’ve gotta say that I find myself rather dismayed that, in 2022, a special edition like this, 40 articles, includes only a single essay written by anyone w direct experience (Elyn Saks in this case) & minimal interdisciplinary A 🧵
Our special edition, "Re-Inventing Schizophrenia: Updating the Construct", is 100% free right now, with 40+ articles from leaders and experts across the world.
It took my 3 years to speak up about this. I did so as a GSA rep in a faculty meeting. As a punishment, the grad committee "failed" me on professionalism in my annual review. I then finally filed Title IX & OCR complaints. 12/x
Honored & humbled to receive the National Coalition's Judi Chamberlin Joy in Advocacy Award this week (). Special thanks to
@SusanRogersMH
; we all stand on the shoulders of giants. 🙏
Title IX also chastised me for never having filed formal accommodations paperwork. I couldn't even bring myself to explain why ("because I ran out sobbing, overwhelmed by shame and not for the last time")... 9/x
Outsiders --
@MonaShattell
(nursing) &
@Robyn_LB
(sociology) -- saved me in that final year. Heckuva lot of people said that filing federal grievances about the senior faculty in my program, in & of itself, would "destroy my career." 13/x
And—finally out!—our paper on youth experiences of police interactions in the context of involuntary psychiatric hold initiation & transport w ace collaborators
@MMunsonPhD
@MorganCShields
@KellyLGreenPhD
& others not on Twitter. 🧵 w some reflections 1
By unblinking certainty I mean the reality that even when known ppl/researchers w direct experience are in the room—as is true for clients of course—little or nothing changes. There is rarely even a moment of hesitation, an averted glance. This is also the weight of certainty 3
Another real concern of mine: and something journalists need to stop doing! Interviewing experts about complex issues and then reducing them only to their own personal experience. This is a form of epistemic injustice, & it’s pervasive. The field can do better. 1
My latest
@NewStatesman
#longread
is on the end of mental illness: Should we stop medicalising mental distress? What would happen if we dropped all labels?
& this is just a selection--judgments so deeply internalized over the years.. But gonna end w love & thanks for true allies, incl from those early days:
@Robyn_LB
,
@MonaShattell
, Steve Marcus (who apparently lurks here on X!),
@CRosenPhD
,
@neilthomaspsy
16/x
Because they were not earned -- any success in these ways was simply a byproduct of Disability-DEI; undeserved, unwarranted, divorced from merit... 15/x
The object (‘psychotic’) is not only any object, but, this logic requires, an object that does not know/recognize itself; in other words, premised on near total erasure of any “right” or capacity for collective self-definition; & the heterogeneity, depth, ineffability w/in this 5
I did go to Title IX. Predictably (?) they suggested I do nothing. "Surely you don't want to be in a program that none of the faculty want you in..? Reinstatment is the most you could achieve & if you don't feel comfortable there, there's no point filing a grievance." 8/x
In grad prog 1, surrounded by 10 senior faculty, a solitary ally asked why other profs wanted to terminate me. Sr philosopher who I had worshipped up until that day turned to Ally-Prof and said: 5/x
This is nothing visible on Twitter, but reflecting today on the profound failures of the ADA to protect the rights of students w psych disabilities, and the “everyday evil” that universities can come to embody. Thread. 1/x
Such a deep honor to have written this with one of the mentors I have learned absolutely the most from:
@BritzBerta
. Open access in SSM-MH "Experiencing and treating ‘madness’ in the United States circa 1967–2022: Critical counter-histories" Thread 1/x
Then we come to the clinical sequelae—the way researchers talk about insight, adherence/compliance, side effects, for example. Again, almost never with hesitation, doubt, sheepish glances; with cool, collected professional certainty 8
We sit there, on Zoom, in a meeting, in a conference, & have no choice but to listen; & often, just by being there, realize em we have tacitly endorsed what is said and the unspoken claims that undergird it. 6
Kicked out of grad program
#1
: “it would be unethical to allow someone with no hope of ever being able to pay back loans to take out loans for a degree”; second grad program : “it’s not that I don’t think ppl w/ schizophrenia can’t succeed, it’s that I don’t believe you can”
I want to hear some underdog stories. Tell me about your 12th grade advisor who said you wouldn’t get into college, your premed advisor who said you wouldn’t get into med school, etc. tell me all the ways you’ve turned their doubt into fuel 💪
Psychosis researchers, activists, stakeholders: the Lancet Psychiatry Commission on Psychosis now has an open call for blogposts (responding to, critiquing or commenting on Commission methods and aims). We also have a new lived experience listserv. See
"If you'd read her recent writing, you would know. You would *know*." The trailing off not motivated by kindness, I think, but a testament to finality -- absolutely, definitively, no future, no possibility of a future even. 6/x
Great thread. I think about this often. In many ways, outcomes for schizophrenia are unchanged decade on decade; societal stigma & reliance on coercion have demonstrably worsened. We need real change.
After doing some recent talks for/with mental health professionals involved in psychosis care, I was painfully reminded about how little of our so-called research ‘breakthroughs’ & ‘key findings’ actually have a meaningful impact on improving care for psychosis patients. (1)
'Psychosis Beyond the Box': Shannon Pagdon & I recently kicked off a *non-research* project focused on less attention-getting experiences under the 'psychosis' umbrella ((quasi-)visions, felt presences, perception of time). Please consider participating!
What do I mean by ‘certainty’ this time? No intimation that the political & epistemic hierarchies bound up in these terms, the scaffolding of coercion/violence, the layers of complexity are there. & not just there, but absolutely, viscerally real 9
“My hope is that this account raises serious questions in our community about how we talk about and treat survivors of psychiatric trauma—because nobody should be dehumanized in the very place they seek care…”
After my first year in grad program
#2
(psych phd) I was told by the assoc chair that requesting greater flexibility in my RA lab hours was "unreasonable" & that with all my psych appts, I should give up my assistantship. I did. Subsequently racking up $100Ks in loans. 10/x
"From the sounds of it she would be quite a burden on faculty" said senior Hegelian; Grad Director: "it would be unethical to allow her [you] to take out loans given her [your] near certain inability to repay them" 7/x
Feel very discouraged—whether I’m interviewing youth who were involuntarily hospitalized or students denied accommodations—by how normative it is to assign moral & personal blame for psych disabilities. Folks just aren’t “trying hard enough”; aren’t “following the rules” 1
Thinking about graduate mental health courses (& course titles & descriptions) & wondering what folks’ thoughts are on language (especially “serious mental illness” & “serious and persistent mental illness”) and preferred alternatives...
#DisabilityTwitter
#DisabledinSTEM
“If the priorities of people with lived-experience of mental ill-health… were driving research…quality of care, improvements in MH service delivery attending to social issues & social determinants, peer models of care & improving experiences of care would be funded”
Our paper reviewing mental health research priorities since 2011 was published today. Have a read for more reasons to ensure the priorities of people most impacted are addressed in mental health, suicide prevention and well-being initiatives.
And simultaneously all the talk about recovery, identity, meaning, honoring “subjective experience”, reducing force—as if the deeper processes of capture & erasure were not already in play. As if they could just be brushed aside. 11
It’s sad but perhaps telling that almost none of the “critical” texts/publications suggested in this thread are/were written by ppl with direct experience of psychosis. Clearly we’ve got a long way to go….
For those psychiatrists who are interested in learning about critical perspectives on 'schizophrenia' what sources would you recommend (books, articles etc)?
Skipping ahead to jr faculty years, one of my early supervisors 'warned' me that grants I was a co-I on and keynote/plenary invitations/talks would not "count" for me the same way they would for other people. Why? 14/x
Excited to be starting this new R01 with Josh Breslau (vanished from Twitter?!) , brilliant RAND co-I Sapna Mendon-Plasek & collaborators Harvey Rosenthal & Len Statham
@Alliance4RR
Nev Jones
@viscidula
receives $3.48 million dollar
@NIMHgov
grant to study Certified Community Behavioral Health Centers! Dr. Jones has been awarded a R01 as multiple-primary-investigator in collaboration w/ Dr. Josh Breslau (
@RANDCorporation
). Read more:
How might we move forward—that seems the elusive question. Certainly “involvement” in the usual sense is not only not a solution, but arguably only bolsters the logic in play. Strengthens it, reseals the cracks. 12
These all of course end up deeply inscribed in one's memory; burned, branded. So yes, there's part of me that wishes so badly that I could just email them & say "you were so wrong. Never say this to any student/supervisee ever again." Tweeting instead; thanks for reading! 7/7
Really dismaying to see this & a second recent
@people
spin job on psychosis & ‘insight’. Obviously there are a range of views in play, the actual issues are complex & fraught—these articles entirely lack balance, oversimplify, medicalize & help no one in the process.
Anosognosia is the No. 1 barrier to treatment for people with
#schizophrenia
; this article is critical to raising awareness of the cruel symptom that affects 57%-98% of those with the brain disease. Public policies that ignore anosognosia are failing us.
Got some really nice texts & emails on this from PhD students w psychosis in the audience. Reflecting on differences betw this talk & similar ones I gave a decade ago this is one big shift: There is power in collective legitimization, power in numbers, power in solidarity.
Psychosocial Intervention With or Without Antipsychotic Medication for First-Episode Psychosis: A Randomized Noninferiority Clinical Trial | Schizophrenia Bulletin Open | Oxford Academic
Adding here that if we want change—& many of us surely do—it’s going to come from a next generation of philosophers, not one but the many, who have actually been there, in institutions as patients; involuntarily hospitalized; epistemically & phenomenological invisible. 1
Brilliant talk by
@viscidula
on dehumanisation and epistemic injustice that people with psychiatric diagnoses are subjected to within philosophy of psychiatry debates
If you have experienced or been labeled with “negative symptoms” in the context of
#psychosis
, please consider contributing an anonymous account of your views & experiences here: 1/x
Somewhat predictably, once a journalist learns I have “lived experience” that’s all I’m quoted on. Perpetuated all the worst kinds of epistemic hierarchies. Actually, I’ve studied & traced the uptake & impact of diagnoses for years & years. 2
I keep seeing great threads about health disparities/racial equity pubs & authorship: all-white authors, ask why & how that/you can change. But also then reflect on schizophrenia & ‘SMI’ research and how extremely rare it is to see lived exp co-authors 1
New publication alert! Trauma practices & trauma informed care in Early Psychosis Intervention programs, nationally & internationally. Analyses led by the phenomenal Helen Wood. Link here: 1/x
A little late posting, but surprised and happy to report that Bevin Croft, the team at HSRI & I were awarded the New York Office of Mental Health’s contract to evaluate AOT (CTOs in UK terminology) in NY. Notified a couple weeks ago. Surprising…? Brief 🧵1/x
Important
#PsychServices
editorial statement from
@lisabdixon
on lived experience inclusion in the journal & call for interest in a new LX advisory group. The times they are a changing’.
Thank you
@viscidula
this was by far the most powerful talk I’ve ever attended on psychosis. I’m guilty of being influenced by Laing, Foucault and to some extent Sass - esp in grad school - but I strive to give voice to lived experiences first and foremost.💛
“Development and early testing of SPIRIT: (Schizophrenia Prediction of Resistance to Treatment) - a clinical tool to predict treatment resistance to anti-psychotics treatment in First Episode Schizophrenia. “ A concerned 🧵
Today is apparently
@Rethink_
‘s UK
#NationalSchizophreniaAwarenessDay
. What would I want to inject here? Appreciation for the extent to which society & social institutions are okay w ppl w sz who look & act “normal” while continuing to marginalize & exclude those who do not 1
Honestly frustrating to see (1) no service user involvement in any article; (2) no mention of the importance of value of involvement in research, design etc (3) no articles on innovations in person centered psychosocial or clinical approaches (beyond mHealth)
“The Humane Asylum”: well-intentioned essay that unfortunately, as for its recent predecessors, makes some important points only to conclude that “new” asylums are the answer. And why is this fantasy so very flawed? Thread.
Out today! New
@APAPubJournals
#PsychServices
paper from folks involved w the Advancing user/survivor involvement in research coalition = Strengthening Review & Publication of Participatory MH Research to Promote Empowerment & Prevent Co-optation led by
@peacefulbeingol
1/x
ICYMI flyer for our upcoming dialogue about navigating research roles as individuals with the direct experiences/conditions studied (specifically psychosis)
I admit to mixed feelings seeing all the SIRS symposia tweets. On the one hand, yay, lots of cool stuff; on the other: what a stark epistemic wall; What a reminder of the exclusivity of academic knowledge production about the psychotic other 1
I frequently reflect on cooptation, tokenism, extractivism & exploitation in the lived exp involvement space. Reflecting especially much on this today... 🧵1/
Maybe this counts as a variant of the
#subtweet
? Researchers/scholars who claim to be anti-oppressive: keep it real. Don't write about exclusion & your efforts to include marginalized folks, etc, & then fail to carve out even a few moments of time to be kind & supportive. 🧵 1/x
Nice to see two of our pieces listed on the hardcopy front cover of
#PsychServices
,
@awaisaftab
et al “A diversity of beliefs…” &
@peacefulbeingol
et al “Strengthening review…of participatory MH research”
Folks invested in advancing user/survivor/mad/psychosocial disability leadership in research: periodic reminder that there’s a fairly large listserv anyone interested can join. Just DM or email me to be added.
#UserSurvivorResearch
#MadintheAcademy
Thread: one of these “early career researcher” lessons learned tales. 1.5 years ago I submit a manuscript that gets rejected after review, described by an authoritative sounding review as “fatally flawed.” We all know we’re not supposed to take these things to heart but I did. 1
Searching the
@SIRSGlobal
conference for sessions/posters on poverty & “no results found.” Probably the single biggest sociostructural problem folks w schizophrenia face…
So grateful for the beauty—and forest creatures—on my daily pedestrian commute to
@PittSocialwork
. We’ll be posting a faculty search for this year very soon! (Focus : race & social determinants)
Do not let the idiosyncrasies of review get to you! No matter how scary and authoritative and damning any given review might seem. Swiftly resubmit. Especially important for those of us ECRs w multiple additional ‘risk factors’ for low confidence -gender, disability, race, etc
Conceptualization and Study of Antipsychotic Medication Use: From Adherence to Patterns of Use | David Roe, myself & colleagues proposing a shift from research on antipsychotic “adherence” to diversified real-world usage patterns
A webinar I am very excited about! Please join us (
@liminal67
@climateshlock
aerik woodams) for a critical dialogue on exclusionary sanism in and outside activism, social media, academia. We're going to be asking & discussing the hard questions! Register:
Folks invested in mental health research: Josh Gordon’s departure from NIMH represents a critical opportunity to make recommendations to the NIH Director regarding her next appointment. I urge all colleagues to consider writing individual or group letters. I’ve drafted one. A 🧵
Keynote on Friday! What I’ll cover: the growing divide between phenomenological psychiatry and political/social philosophy over the 20th/21st centuries 1/x
While I realize this is the New York Post, the images & text here seem more an exaggeration than departure from other reporting on Simon Martial. The whole situation is a tragedy, including (not excluding) him. Thread.