“This is the largest gathering of people with psychiatric disabilities I have ever seen in one room – voluntarily.” Judi Chamberlin, paraphrased from the closing session of Alternatives 1985
I decided to write this giant monolith of a blog post for my community members in Pittsburgh who were not able to attend Alternatives this year. I’ve stuffed as much information in this piece as I could muster, so I hope anyone reading this can imagine themselves in attendance and potentially benefit from all these amazing resources.
This is currently part one of this blog post – I’m still working on the second half (hopefully to be completed later this week).
Please email any corrections to me here. Also, if you attended Alternatives 2018, feel free to talk about your experience in the comments section below!
First off, what exactly is the Alternatives conference? As described on the the Alternatives 2018 website:
“The Alternatives conference is the oldest and largest conference of its kind, organized and hosted for more than three decades by peers for peers (people with lived experience of the behavioral health system, emotional distress/crisis, trauma, substance use, and/or addiction). Alternatives is renowned for offering the latest and best information in the peer recovery movement, and provides an invaluable opportunity for peers to network with and learn from one another. This conference is funded entirely through registration fees and donations.”
For me, Alternatives is a space where I know my identity and “radical” views on mental health will be (mostly) accepted. It’s an event where I know the keynote speakers will be people with lived experience who are regarded as experts (rather than tokenized or included as a diversity afterthought). It’s a space that accepts me as I want to be identified, and that’s so important (and sadly, so rare in mental health). It was so exciting to finally be able to attend.
Monday, July 30th (Day One: Advocacy Preconference)
For the first real day of the pre-conference (technically I arrived Sunday night for a quick dinner), I got up bright and early (breakfast starts at 7am) for an entire day of advocacy prep for Hill Day – when conference attendees schedule and attend congressional visits with their local and state legislators on Capitol Hill. To prepare for Hill Day, the advocacy preconference included an advocacy panel, role playing activities, and small group work. We heard from advocates like Bruce Darling of ADAPT and Teena Brooks.
We reviewed our group policy priorities (decided upon before the conference through an online survey):
- Ensure significant peer participation in the development of national and state mental health policies.
- Develop and sustain alternatives to involuntary treatment by increasing the availability of peer-run respites and other peer-run crisis supports.
- Protect the human rights of persons labeled with mental health conditions.
In the afternoon, we broke into state groups to practice talking to our legislators about the policies. I was happy to discover the huge representation of people from Pennsylvania at this conference! (Note for non-PA residents: PA is much larger than anyone expects or can imagine, it’s not weird to have no idea who is coming from the opposite end of the state). I met Susan Rogers, Director of the National Mental Health Consumers’ Self-Help Clearinghouse. Her, myself, and CPS Sammy Albert (featured in our recap video) had an hour long conversation after the day ended about everything radical mental health, Mad Pride, the C/S/X movement… The dedication to the movement was very tangible at this conference, and it was amazing to witness how many open conversations were going on, even though it was only the first day.
Favorite Quote: “Lose your voice, lose your rights.”
Inside Our Minds Day 1 Recap Video: https://www.facebook.com/insidemindspgh/videos/661282214232542/
Tuesday, July 31st (Day Two: Hill Day and Conference Welcome)
Another long day ahead! After breakfast, our team from Pennsylvania met around 8:30am to head out (aka Uber) to Capitol Hill. We had four scheduled meetings for the day: Rep. Doyle, Rep. Lamb, Sen. Toomey, and Sen. Casey. We met with staffers from each office, discussing our policy priorities and providing handouts.
The highlight of our morning was meeting with Kate Werley from Sen. Doyle’s office. This was our first meeting of the day, and many of the people in our group had never visited their representatives before. Kate was engaged and interested in our materials, and she knew a lot about disability policy. She left us with some important advice: don’t make your advocacy only a yearly event. Go several times each year, at the local, state, and federal levels, whenever you can. Build relationships with your representatives.
Conference Welcome and Keynotes
“Conference Welcome: A History of Alternatives” presented by Susan Rogers and Dan Fisher
I must admit, I was a bit geeked to meet people at this conference who personally knew and were friends with Judi Chamberlin. Reading her book, On Our Own: Patient Controlled Alternatives to the Mental Health System, was one of the first experiences I had with the C/S/X movement. It was also amazing to learn about Pittsburgh’s history in the movement – where Alternatives was held in 1990 (also the year I was born).
“Crazy Lives Matter Too: Imagining a World Where Everyone is Valued” presented by Wilda L. White
The first keynote presentation of the conference was given by Wilda L. White, the outgoing executive director of Vermont Psychiatric Survivors, a statewide mutual support and civil rights advocacy organization whose mission is to end psychiatric coercion, discrimination, and oppression. She tried a case in the San Francisco Superior Court against her former psychiatrist for psychiatric injuries, representing herself (Wilda is a graduate of Berkeley Law School and is licensed to practice in several states). She recently lost the case; however, the fact that she challenged the system and made it to court is a huge accomplishment.
Wilda’s talk was a powerful, three-part challenge to the Mad Pride movement: 1) What is our end goal? 2) How are we going to address how others perceive us as “crazy”? and 3) How are we going to address intersectionality in our movement, especially as it has to do with racism? Wilda discussed how our society is moving from mass incarceration to mass medicalization – a more covert approach to coercion and control… and going off of this, how the conflation of mental illness and violence disproportionately affects the black and brown people in our movement.
A concept that really resonated with me was how psychiatry and the mental health system have institutionalized not believing us. As people labeled with a “mental illness,” we are not even considered credible reporters or witnesses of our own experience (see “epistemic injustice”).
Favorite Quote: “I vowed to become better, not bitter.”
“Reclaiming the Terms of Engagement: A Vision for User/Survivor Leadership in Research” presented by Nev Jones
Nev Jones is an assistant professor of mental health law and policy at the University of South Florida, affiliate faculty of the Louis de la Parte Florida Mental Health Services Institute, and affiliate faculty at the Yale University Program for Recovery and Community Health. Nev has done significant research in first-episode psychosis, predicting psychosis, and the experience of voice hearing. At this conference, she also ran a workshop, in conjunction with Emily Sheera Cutler, called “Mad Studies and Survivor-Controlled Research in the US.”
Nev’s talk focused on (the lack of) user/survivor research in the US – how people with lived experience are excluded from academic research and literature. She asked, when professionals dismiss our community as having a “lack of knowledge,” how can we make them listen? How can we reclaim academic conceptualizations of “mental health” and “mental illness,” as has been happening in Canada and the UK? Nev previously worked to address these questions with the Lived Experience Research Network (LERN), a funded service user involvement and leadership project that operated between 2013 and 2014. Currently, Nev and Emily are running at study to help better understand how experiences of mental difference and behavioral health treatment impact activist involvement. You can participate in the survey here.
Personal Note: Nev talked about the lack of Mad student associations at US universities. The only university I know that’s doing Mad Pride is the University of Washington – they just had their first-ever Mad Pride Month. Thinking locally, could a Mad student association be a possibility for the University of Pittsburgh? Can alumni help start student groups, because as a double Pitt alumna, I would totally be on that.
Inside Our Minds Day 2 Recap Video: https://www.facebook.com/insidemindspgh/videos/662302457463851/
Wednesday, August 1st (Day Three: Conference Part 1)
“How My Experiences as a Mental Health Client Shaped My Later Work as a Therapist” presented by Daniel Mackler
Daniel Mackler is the director of four documentary films on recovery from psychosis and schizophrenia without medication (referenced below). He is also the co-author of two books: A Way Out of Madness: Dealing with Your Family After You Have Been Diagnosed with a Psychiatric Disorder and Beyond Medication: Therapeutic Engagement and the Recovery from Psychosis. Daniel previously worked as a psychotherapist for 10 years.
Daniel discussed how his childhood experiences with therapists (he describes as confusing and painful) informed his own work as a therapist later in life. Daniel’s talk focused a lot on power – and how some therapists don’t want to acknowledge how much power they are given over their clients (and how much they enjoy it). As a therapist, Daniel had one major aim: “My goal was to listen to people.”
Favorite Story: Daniel told a story about how he would bring his AOT clients into a conference room and put their therapists on speaker (without letting the therapists know). It’s terrifying to learn how some mental health professionals talk about their clients behind their backs.
More About Daniel: All of his films are available for free on YouTube (!!!)
“Creating Alternatives to Hospitalization” presented by Shery Mead, Chris Hansen, and Sera Davidow
This keynote featured the work of three well-known activists: Shery Mead, Chris Hansen, and Sera Davidow. The talk began with Chris Hansen speaking on behalf of herself and Shery on Intentional Peer Support (IPS) and the importance of peer-run respites and other alternatives (Shery cannot speak publicly due to the effects of Parkinson’s on her voice, but she is still active in the movement and attended the conference). Chris argued that in our current mental health system, “we give up our power, assume we are broken and in need of fixing…” We are given treatment in the form of “toxic, one-way relationships” with mental health professionals, rather than peer support from someone on the same level.
Favorite Story: Chris talked about how the smoking room at an inpatient facility became a type of foundation for peer support in her experience. The smoking room was an excuse to get together and talk to other peers. Chris cites those conversations as more helpful than the actual treatment.
The second part of this keynote featured Sera Davidow discussing the current climate of peer support within the mental health system, drawing from the Peer Respite Handbook and her personal experience. She began by talking about her own experience, being given a laundry list of diagnoses that she didn’t agree with or relate to (as she stated, she wanted to just say “fuck you” to the whole ordeal). She argued that psychiatry has always been used as a tool of oppression, giving the example of black men being given the diagnosis of schizophrenia for being “paranoid about the police.”
One thing she said really stuck with me – Sera’s quote: “I see people in peer roles go and do the same things that were done to them.”
Workshop: “Beyond Disorder: Plural Pride in the Multiples Movement” presented by The Redwoods
The first workshop I attended was one I was looking forward to – a conversation on Plural Pride, a movement that goes beyond the medical diagnosis of dissociative identity disorder (DID) or “multiple personalities.” While the medicalized therapy for DID involves integration, or getting rid of “multiple personalities,” many find that they want to live as systems or multiples – as more than one person in one body. Before this workshop, I didn’t know much about this movement other than watching a few videos on YouTube, so I was excited to learn more and be more inclusive in my community work.
The workshop was presented by several of The Redwoods (mostly J, Z, and Alli) and gave attendees a broad overview of Plural Pride through The Redwoods’ personal experiences. I wouldn’t do their story justice by attempting to repeat it, so if you can, try to attend a workshop they hold in the future. A major takeaway I got from the workshop is to acknowledge the singlet normativity that dominates our society and take steps to make community spaces welcoming to multiples, systems, and people who identify as having DID: e.g. don’t freak out when multiples talk amongst themselves, don’t assume multiples want to integrate, etc.
The Redwoods’ Resources Page: https://redwoodscircle.com/resources/
Resources from The Crisses (also in attendance): http://kinhost.org/
Workshop: “Grounding Peer Work in Human Rights and Independent Living” presented by Sarah Knutson
I also attended Sarah Knutson’s workshop on human rights. Sarah runs Peerly Human, a web page that houses weekly virtual peer respite meetups: “Deadly Serious: Talking Openly About Suicide” (Wednesdays 8:30-10 pm EDT) and “Intentional Peer Support Practice Series” (Saturdays 5-6:30pm EDT).
Sarah’s workshop delved into a wide variety of topics: an introduction to human rights, the social determinants of health, the fight/flight/freeze response. I love that Sarah mentioned the Power Threat Meaning Framework, an alternative to more traditional framework that rely on the medical model and psychiatric diagnosis, rather than a more psychosocial perspective, considering the influence of trauma, threats, and the power dynamics operating in our lives. I recently read the published PTM Framework guide after learning about it through the Mad Studies Facebook group, and I find that it is much more validating and helpful in processing my own experiences.
Inside Our Minds Day 3 Recap Video: https://www.facebook.com/insidemindspgh/videos/663390530688377/
Thursday, August 2nd (Day Four: Conference Part 2)
“The Power of the Local: Building a Future Beyond the Mental Health System, One Grassroots Community at a Time” presented by Laura Delano
The last full day of the conference began with a keynote from Laura Delano, an ex-psychiatric patient and co-founder/creator of Inner Compass Initiative (ICI), a website that shares information and resources on mental health and supports people who want to leave, bypass, or build community beyond the mental health system. ICI also includes The Withdrawal Project (TWP), a resource for people who want to safely reduce or withdraw from psychiatric medication. Both ICI and TWP include a community platform for people to connect with others in their area that have similar views and experiences.
I greatly admire and respect the work Laura is doing for the mental health community, especially because I know how much hate can be directed your way for speaking out against psychiatric medication. However, the reality is that some people do not want to use psychiatric drugs, and we need to have comprehensive resources to help prevent or reduce harmful (and sometimes fatal) withdrawal effects. TWP has an extensive list of resources (I haven’t even come close to reviewing it all) that can provide that much needed education.
Workshop: “Reducing Hospitalization by Using eCPR in Communicating with People in Altered States” presented by Dan Fisher and Oryx Cohen
Later in the day, I attended a workshop by Dan Fisher and Oryx Cohen on Emotional CPR (eCPR), an educational program designed to teach people to assist others through an emotional crisis and avoid hospitalization. Our large group sat in a circle of chairs in the cafeteria and learned about the core guiding principles of eCPR – a focus on connection, empowerment, and revitalization to assist others through an emotional crisis or extreme/altered state. The focus of eCPR is being in the present moment and sharing feelings and emotions, rather than making assumptions about a person’s mental state and bombarding them with questions. Rather than othering a person going through a crisis, the training focuses on how emotional crises are a universal experience that anyone can go through (not just “crazy” people), at any time.
More on eCPR: Emotional CPR as a Way of Life
My Workshop: “Anonymous Open Mic: Building Community Narratives Through Storytelling and Performance”
Naturally, I have to include my own workshop in here! I was overjoyed and honored to be able to present at Alternatives 2018 on our most popular Inside Our Minds program – Anonymous Open Mic (AOM). The workshop consisted of a brief overview of AOM – the foundations and development of the program, core tenets of each AOM, and public reception. We ended with around 15 minutes of a “mini” AOM, giving the attendees a chance to perform past anonymous submissions. This was a huge hit. I was worried that attendees without prior knowledge of AOM would be confused after only 25 minutes of presentation on the program, but everyone seemed to relate to the concept and asked interesting questions about the process. Needless to say, I left the workshop with a huge smile on my face.
Mad Pride and Neurodiversity Caucus lead by Emily Cutler and Kaz DeWolfe
Finally, the second full day of the conference ended with the caucus sessions – informal discussion groups on a variety of topics, lead by facilitators. I chose to attend the Mad Pride and Neurodiversity Caucus to meet more people who identify with the movement. This caucus was facilitated by Emily Cutler and Kaz DeWolfe, two activists in the Mad Pride and Neurodiversity communities and creators of Radical Abolitionist, a cognitive liberty blogspace.
Inside Our Minds Day 4 Recap Video: https://www.facebook.com/insidemindspgh/videos/664553083905455/