Psychedelic Conferences: "Nothing About Us Without Us!"

None of the many psychedelic conferences in 2023 have slots for patients to speak. The disability rights movement declares, "Nothing about us without us!" but instead of valuing patients' lived experiences or practicing trauma-informed medicine, the field of psychedelic medicine is excluding us from the rooms (and zooms) where policies are debated and best practices established.

In this episode, Molly gives an update on season two (coming soon!) and provides some perspective on the marginalization of patient voices. Spoiler: she argues that the field of psychedelic medicine is building structures of violence against the patients it hopes to serve. One swear word appears in this episode.

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Transcript

Hi Everyone! 

It's Molly from Ketamine Insights coming to you with a short episode between seasons one and two to provide you with an update and also a little editorial about patient voices. 

I'm super excited to report that our listenership is continuing to grow even as we take a break to prepare for season two. So far, all of that growth is coming from listener enthusiasm and word of mouth, which is really exciting for us because that's the best kind of marketing… basically cuz I don't have to do anything except make a good podcast!

If you've enjoyed the podcast, please do take a second and think of someone who might like it and let them know.

As we work on season two, I wanted to share some thoughts about the importance of patient voices. In 2023 there will be a bunch of conferences on psychedelics, both online and in person. And these conferences will feature lots of different perspectives on psychedelic medicine. They're going to have researchers, physicians, therapists, and people called "recreational enthusiasts." There'll be entrepreneurs speaking as well as their investors and - I'm not kidding - attendees will get a chance to hear from investors' investors in the form of special funds created to fund and profit from this growing field. 

But I haven't been able to find any conferences with slots for patients to speak. Not only are we not invited to speak, but there are usually no tickets cheap enough for someone like me to attend and no discounts available to patients.

These conferences are not frivolous. They shape the culture. They inform the best practices and the codes of ethics the people like me will be subject to. So what we've got is a fledgling but growing medical industry where patients, caretakers, and allies are not only not being heard, it often feels like we're not even welcome to listen. It's really messed up. 

Mentally ill people (many of us prefer the term Mad) should be leading the conversations about the most promising treatments and instead we're not even at the table. 

The disability rights movement declares, "Nothing about us without us." It's not just unethical to exclude people like us from psychedelic conferences, it's dangerous and it's most dangerous for the people who are most vulnerable. 

I'll give you an example of what can happen when we're not at the table. Last year, New York Mayor Eric Adams started a new campaign to deal with houselessness by rounding up poor and mentally ill New Yorkers. He has instructed mental health workers, paramedics, and police that people can be forcibly institutionalized "even when there is no recent dangerous act." And that's a quote: "even when there is no recent dangerous act." 

This kind of forced hospitalization and warehousing is on the rise around the US. In pushing this approach, Mayor Adams is following in a long tradition of criminalizing poverty, forcibly detaining the mentally ill, and using psychiatric diagnoses to incarcerate specific groups. In the past, these supposedly "insane" (with air quotes) supposedly dangerous groups have included Black activists, unwed mothers, indigenous people, and houseless people. Then, once you are in, you are at the mercy of an unaccountable bureaucracy, a bureaucracy that's not just opaque, but also profoundly powerful and often inept. 

This last part - about the bureaucracy and being in - is something I know from personal experience. When I was voluntarily institutionalized a few years ago, I had no idea that, once I checked myself in, I would lose my bodily autonomy. I was simply informed that I had no legal right to leave. Once inside, I quickly understood the new rules. Everything about the place was disempowering. Everything said, "What you think is best for you is not important. We decide what meds you take. We decide what activities you do and whether you can walk away."

This is how hospitals treat everyone who feels they need 24-hour care to stay safe. 

Vilifying people with mental health challenges is a big part of the justification for this kind of incarceration. The vilification and dehumanization is necessary to sell the public on rounding up people who quote "have no recent violent acts."

I'm not exaggerating or being dramatic to get my point across. I'm trying to paint a picture of the violence that's enacted upon people with serious mental illness when we're ignored and excluded. Whether we're talking about psychedelic medicine, medicine as a whole, or countless other areas of public life, in any conversation, when you exclude the most vulnerable stakeholders you are as Tenacious D would say, "You're f****** it up for the people that's in the streets."

It's unethical and it's dangerous. The field of psychedelic medicine is setting itself up to build and perpetuate structures of violence against people like me.

And it's sad. And it's scary. And it's completely avoidable.

But here at Ketamine Insights, we try to have a lighter tone. That's so we can be approachable and because, for me personally, I can't spend a lot of time in that angry and sad place. I got to live in a lighter place - informed by all that stuff - but intentionally constructive and optimistic.

So here's the good news: I'm super excited about what we're putting together for season two. We're going to keep providing information designed to be accessible and actionable for patients and for those who love us (and hopefully a few psych professional types are listening in as well).

Season two will include some really cool stuff. We've we've got interviews with family members. We're talking about trauma. We're talking about community. We're talking about what a trip feels like and we'll discuss that old adage, "there's no such thing as a bad trip." 

But to make season two of this little show, we need your help! Please email us or DM us on instagram with topic suggestions. We're also eager to hear about something you're proud of from the past week or something you like about yourself.

If you're doubting whether you should write us; If you're unsure whether your input is interesting or helpful… it is! Please reach out! You're exactly who we want to hear from.

Also please check out our Patreon page where you can pledge some money to help us out, and where you can fill out a short survey. Go to patreon.com and search for Ketamine Insights. Our email address is ketamineinsights@gmail.com or Instagram is @ketamineinsights.

Thank you for listening, and for spreading the word, and for being as kind to yourself as you can be. Remember to advocate for yourself and never ration your joy.

See you soon!