Those who have been following my stride know that I’ve moved around a few times in the past 6 years. I left my long term nest and psychiatric survivor community in Northampton, Massachusetts 6 and a half years ago, moved to San Francisco and have been primarily on the West Coast since then.
Northampton was where I was initiated into the psychiatric survivor community movement, where I came off psych drugs, organized with the Freedom Center, was involved with the Western Mass Recovery Learning Community, and pretty much lived as a psychiatric survivor community activist, writer and yoga teacher for nearly 10 years.
To my knowledge, Massachusetts as a state and Western MA in particular can’t be rivaled (in this country) in their psychiatric survivor community support and activist efforts as well as resources for those looking to escape, criticize and/or overcome the effects of psychiatry.
Without even realizing it, for a time when I moved to California, I was a bit lost, or rather, I had lost my passionate local activist psychiatric survivor community, which, even with its drama and in fighting, had been the foundation of my work and life for my entire adult life up until then.
I did meet some activists on the West coast and even reconnected with some I had already known in San Francisco and then Portland, both of which had their own small activist/psychiatric survivor community of sorts, but they were generally (with exceptions I’m sure) less rooted, less resourced, not quite off the ground and were more like budding communities of people who mostly didn’t yet know each other very well. And perhaps it was me who was new and didn’t know these communities very well yet.
After moving between San Francisco and Portland a couple of times, back and forth, back and forth (not recommended, not for the faint of heart), I found myself longing to live in a small town again and following one friend and sublet opportunity, landed myself here in Olympia, Washington, where I’m finally in a longer term home.
It took me a few months to feel settled enough here to initiate something new. After moving over a dozen times in less than half a dozen years, I was very tired at times and needed to focus simply on the essentials of survival and maintenance.
There were a few individual psychiatric survivors and activists I knew here in Olympia, and I continued to meet more (it’s mathematical), yet it seemed there was no actual psychiatric survivor community grassroots “movement” here, and my initial intention was to start one (not because Olympia is more ripe for this than any other college town, but because it’s where I ended up).
I knew very few people here and can be shy as often as bold, so my initial impulse was to screen Daniel Mackler’s Coming Off Psych Drugs and start a discussion afterward, so the film could speak for me.
My friend and I had created a bare bones Olympia website and Facebook page, and I asked around about screening venues. A community cafe agreed to host our screening and I spread the word via a Facebook event and fliers around town, and through an enthusiastic, bright woman I met who runs the yoga collective at Evergreen College.
Even though I’ve been to and organized countless events like this before, for this one I had no idea if 3 or 50 people would show up, since I had so few connections here. It ended up being 23. I brought all of the psychiatric survivor community literature I’ve held onto after so many moves in a single car up and down the coast, each time needing to downsize further (only 2 boxes worth).
The film was well received; the crowd felt like kindred spirits. Two organizers came all the way from Mindfreedom Seattle. So, in the end I felt very supported in this effort, but throughout the planning and organizing process I felt pretty alone and had no idea if many people would even show up. Still, I knew that this topic impacts so many people that it was at least worth a try to create a psychiatric survivor community (anywhere).
It made me realize that there are so many towns and cities out there without psychiatric survivor communities with survivors who feel alone, or like the only people who “get it” are online.
Just like there are psychiatrists offices and psychiatric wards in most every town and city, and many medicated people, there must be movements of psychiatric survivor community building activists in each of these places too.
I realize now how hard it is to start a movement “alone”, but with the films and books we have available, we can feel less alone. Screening a film allows you to let the movement and other psychiatric survivor community activists in other places speak with you, and even for you, so I highly recommend that as an icebreaker and a way to initiate discussion (and am ever grateful to the film makers and their work!).
Despite my initial doubts and insecurities, I can already feel a great group of people gathering to birth a psychiatric survivor community in Olympia, and have made some good friends now by taking the risk.
There must be at least one person like me in every city and town, who feels alone in their passion, who has a story to share, who’s been connected to the psychiatric survivor community movement virtually for some time, and who can step forward to start a local psychiatric survivor community by screening a film, giving a talk or leading a discussion.
It always does help to have at least one or two collaborators, but isn’t entirely necessary. If you have supporters online and in other locations, they can help you plan your events, and before you know it you will have people in your area to help. Bringing in speakers to visit or join by video chat is another way to collaborate in an area where there isn’t a movement yet.
Most of us need local, face to face psychiatric survivor community, even while online connections can be valuable too, and of course some people are limited in their capacity to come to live events. I truly believe, though, that when we talk about a grassroots movement, we need to cover as much of the actual grass as possible. We need to sit and stand and even hold hands and hug, in person, in our local geography.
Rather than allowing big pharma to divide and conquer us, we need to create united fronts of true connection, and we need them everywhere.
This is a fantastic idea, Chaya! Thank you!
I am a survivor of the anti-depression movement which had me using them for 15 years. I fired my psychiatrist and checked into a hospital to get off effexor. After three weeks I was better and realized that they made my heart “hard”. I encourage others to learn to adapt to life’s changing circumstances by getting into action and improving your environment. I do not say some of us don’t need something to help us at times, but I am encouraged by this man for us to talk among ourselves about the impact of big pharma on our brain chemistry. I have learned that there is a genetic component which makes it hard to have good relationships in a family where it is present in one or more members. It is critical that the family be educated and informed, and not just go along with what the head shrinkers have a profit motive and don’t care one bit about you or your well-being! We don’t have lobbyists, lawyers or unlimited funds to go with each trend that emerges in the treatment of mental health. We need to encourage alternatives to drugs for our depression and other mental ills!
Here’s an alternative to psych drugs… and it actually “fixes” a lot of little physical things too…
http://www.youtube.com/watch?v=WBZy43Tyaw4
http://www.youtube.com/watch?v=TUBKeybdb6E
http://www.youtube.com/watch?v=EYp4iaQ4Kos
http://www.youtube.com/watch?v=tNwO-f23XAE
http://www.youtube.com/watch?v=2p8iiyy0RFA
Truehope: The Leaders in Brain Health
Thanks Tim. Have you tried the supplements yourself?
Thanks Deborah I definitely agree we need alternatives to drugs! And you’re definitely right we need families and communities to be informed as well as doctors.
Thank you Jyl!
Very good article, Chaya. From what little I know about Olympia, I think there is a lot of potential for movement work there. A long time ago, I lived in Bellingham, and being a liberal college town about the size of Olympia, it was a good place to organize also. Good luck with your efforts.
Thank you Ted! Did you organize anything in Bellingham?
There’s really no psychiatric survivor movement here in Olympia and I took a bit of a hiatus from creating one. But I’ve been going to ordinary networking events and there seem to be just as many psychiatric survivors of those as anywhere or at least those who have psychiatric survivors intheir family.
Finally! Thank you!
Thank you Celeste!
Chaya, no need to publish this. A friend of mine, a brilliant artist, is now under AOT and she says they are trying to get her to a state hospital. I remember you put up beautiful art done by a young person who was incarcerated. That must have been incredibly validating for her. I know you are in California and this person is in VT. But do you have ideas? I believe this is retaliation since she made a police report about a nurse who beat on her in an ER. They want to silence her and stop her from blogging. She’s done some wonderful work.
Julie
I posted a comment you should read as a professional in the field. I went to a mental hospital to get off psychiatric drugs because they were taking away my passion and sucking up my time and energy. I was beaten and injected with hard drugs to control me when I complained that they didn’t protect me from violent men in the same ward and yard. The county investigated and found no wrong-doing. I had been hit in the head by a kicked volleyball on the yard. I complained the day before that they were kicking it, then that happened. I wanted an exam. They refused, so I called 911 – that was when the guards tackled me and I heard my head crack on the linoleum floor. The tackle and shot was directed by the director of the facility which was run like a mad-dog kennel. She had her long nails dug into my arms and left marks restraining me. I was not really out of control, I was just calling 911 to get some medical attention. They finally got a woman to give me an exam. She agreed with me that that was an inhumane place. I tell you this personal story to educate you.
you can get in touch with me via julie@juliegreene.net.
Thanks!
Thanks Julie!
Thank you for your article Chaya,
I recently attended a peer training program with Oryx Cohen and Leah Harris at the MetroBoston RLC. It was my first time. I thank Leah an Oryx for their dedication to the betterment of Psychiatric Survivors.
There was a showing that evening of the healing voices movie that Oryx helped produce.
Good Luck Chaya, From Cheryl
A loner in Quincy, Mass., Peace and Bless
Thank you Cheryl! There’s a lot of great stuff happening in Massachusetts. I lived there for a long time but I guess it was my mission to cover more grass. Say hello to Massachusetts for me!
Well done, how is organizing going today in Washington State? Would like more groups to join our National Coalition for MH Recovery
Thanks Daniel. There’s not a ton going on in Washington state butthere is a group in Seattle that meets regularly called Mindfreedom Seattle. Will you send a link or more information about your coalition membership!? Thanks.
Your group can join by visiting our website. http://Www.ncmhr.org
Go to membership and there should be a form
Here is the link for organizational membership: http://www.ncmhr.org/membership-application.htm
Hi. I’m just learning about this psychiatric survivor movement. It’s interesting for me because I do see huge problems with the MH system as I think anyone would! But I have found meds over all to be extremely helpful and have connected with great individuals in the mental health system. I stumbled into this movement through connecting with Sarah Nutsin and her online community peerly human. I would encourage people on here, as it’s a popular blog with a lot of interest to check her out. Anyway I do resonate with some of what people have to say but some I disagree with. In the end, the emphasis of coming together as a community of people rather than being isolated and separated is what I and I know others believe in.
I was going to e-mail you privately about this question/ subject but saw this awesome article and what I have to say relates to it. So figured maybe people would have something to say that reads your blog.
So I’m in my twenties. I am diagnosed with, and resonate with having, major depression, generalized anxiety, and PTSD with a history of self-harm. I am also totally blind. Was born and raised in MA, acton really surbia! Went to lesley university in Cambridge got a BS in counseling. Could not emotionally live at my parents house anymore. Was on some meds and had a couple of really good therapists. Found a place all the way in Chicago IL one of two places in the whole country! for those who are blind/ visually impaired under sixty five. Like an assisted living facility, you have your own apartment with 24 hour a day security of knowing you’ll always have support, peer community, meals/ housekeeping activities ETC. And they said that they understood about psych issues.
Well they lied. A lot of residents did and do, have these issues and are in fact on a lot of meds. But the social worker had no idea what resources were available in his own city. The psychiatrist came once a month but if you weren’t put on the list he didn’t see you. So I was very disappointed and left to advocate for myself. Which I’m totally used to both in the blind and mental health realms but still was disappointing. Things just went wrong, built up. But anyway in november 2013 was first hospitalized. Esentially knew that if I stayed at friedman place the facility I would cycle in and out of the hospital forever with no treatment plan or support in that department. I could not go back to MA as my family does not get mental illness at all.
So I voluntarily asked to go to a psych rehab facility. Here in IL which I think is the only state that does this. These places are unique perhaps in a bad way as hundreds of people live here!
I had quite a fight on my hands as both the social worker calling these places and many of the admins would notget over the blindness thing. Liability, I might fall down and sue things like that! So anyway finally came to my current facility through someone who knew the director who is very outside the box, for place like this!
The place with it’s anoyances and problems did and does help me. Am on solid meds. Have solid therapy. No self harm since 2015 or hospital since 2014!
I met an amazing friend here and we’re like sisters. We’re doing well here though because we do have the support, emotional and with the day to day things like meals housekeeping routine ETC. She has worse symptoms than me at times, and physical issues and tried being on her own once and it was a health disaster. Due to my blindness, depression, and high anxiety I would be terrified to live alone we both know just the two of us under one roof would be setting up for failure.
One thing that I feel so strongly about and where I feel the peer movement needs to get directed is providing practical day to day supports in terms of peer homes. Like alternative to group homes basically. Or being left isolated with very few services that often do not come through no one cares if a provider has to cancel, someone doesn’t get food, meds, help with personal care ETC. As much as I hate things about my facility and there is a huge stigma around living in residential that I wish there weren’t, I would not trade that to be supposedly “independent” and yet not having the basics. Neither leads to a full happy life though.
So your choices are, broadly and especially with no family or friends to lean on, and honestly no money for expensive support, to be isolated and take what little the system provides. Or be stuck in a group home with questionable staff and in some states it’s unlicensed. And I know in MA they kick you out during the day!
My dream is to somehow create houses, maybe with just three or four people, similar to what is provided in the peer respite as I understand it. Would love to do more research on this front as in connect with those that work there. Anyway That kind of totally emotionally safe caring atmosphere with everyone sharing responsibility and support, and just fun or supportive activities provided with no enforcing it. Like exactly like what the respites say they are but long term. The two week/ week long ones make sense for a crisis, and I know funding determines a lot! But clearly we need way more. The movement seems to be doing well with drop in spaces, warm lines, and crisis respites ( again really need to fully investigate all these things) and I think way more can be created! I think it would be ideal to have them in citys too, like a respite in the boston area would make a lot of sense though probably very expensive!
So that’s what I and others with multiple disabilities especially feel is hugely important. I may not be as anti meds as people in this community, but I would like nothing more than to have my friend and I not be living in a building with 300 people across the country from my family, and only geting $30 out of our SSI checks. There has to be a way to do this that doesn’t envolve endless paperwork, and being put in a small and questionable home with rules and restrictions set out by people who don’t get it at all.
I feel with this as the new norm, having the respites as they are and expanding, places that might be like homeless shelters (as I know respite doesn’t allow homeless people but there’s a huge need there) short term transitional ones, and ones where people can just live their lives in a totally supportive nest of safety.
It is great to have the weekly support groups, but honestly doesn’t make a difference to the day to day life of a person who is dealing with emotional issues, and another disability. When their care providers cancel and so they can’t have a clean house, food cooked, meds and other things.
This is a huge thing for me. I am geting to know Sarah like I said. I’ve connected with a couple other people and have kept hearing again and again Western MA. I would be willing to go to any state/ area to make this happen. Well not the dessert or north pole LOL!
Oh and would not want to be in the middle of nowhere or on a farm though for many those are totally perfect options for them. I do believe variety is also very important.
I just feel like you might resonate with things I’ve said here. If you have any contacts or know of situations already in progress I really need to know!
Lastly as I’ve said before, I won’t say the only, but a huge part of people geting well comes from having a solid sense of home and the basics, which include physical needs as well as belonging, covered. I bet you if this became a reality and people had these living situations taylored for them, you’d see a big reduction in symptoms and probably med prescribing. This area is clearly where the system just totally does not care. We have to support each other through creating colaborative homes not deticated by state funding or programs. I do strongly feel that these places should be in areas that have a variety of resources, including tradditional mental health care and ideally would be allied with some people in the MH community who are open minded. If the respites, which I deffinetely need to learn more about, took off eventually I feel this could do too.
Sorry for the long comment and if you want me to make it into a guest blog post I could do that, with adding thoughts from other disabled friends.
But please any contacts or information you or your readers have I would so apreciate.
Sam, you did a good job advocating for yourself. Above all, the individual is the best assessor of what he/she needs in life, and should be the #1 resource for pinpointing gross inadequacies and inconsistencies, as you have so brilliantly done here.
I am losing my eyesight at the moment and rapidly discovering that fully sighted people fail miserably at truly understanding what we are up against.
For instance, when I was incarcerated in a hospital years ago, observers watched as I did what to them seemed illogical, but in fact were ADAPTATIONS to not seeing well. In addition, my eyeglasses prescription had been filled wrong and due to economics I was unable to purchase replacement glasses.
The untrained observers saw me organize my belongings according to color-coding, which since has become habit. This is not due to compulsive behavior, but I had learned that placing a dark object in a dark space will mean I am not likely to see it. The simple solution to “losing things” due to lacking ability to see contrast between colors is to place a black cell phone against a white background, as example. These uneducated, untrained observers had no clue and no one even asked. My actions were completely mis-labeled as “psychotic.” That’s just an example of gross inadequacy in a supposedly medical setting.
Julie
Wow Julie! That’s terrible. Yeah of course you were doing the right thing it’s called contrast LOL anyone could figure that out. There are people who can help with people with low vission for free, with organization issues, how to read braille/ large print, computer software ETC and it’s free. I can give you more information if you want
Sam, In the USA “disability” is not even considered valid without a doctor’s note. I don’t have one since the last dr. I saw wanted to operate and I refused. I am TERRIFIED of doctors because I have a very understandable fear (not a phobia) due to gross malpractice and abuse by professionals in the past.
While I do have some need, I don’t want Big Brother in my life either. The thought of anyone coming over here gives me the shivers. That, too, comes from traumatic experience, quite understandably.
My local agency demands “proof.” The way disability is defined in the USA is just shocking and demoralizing.
A lot of people are forced into low vision due to economics. I can’t get glasses the right strength unless I pay, pay, pay…..The cost is at least $100 more and the wait is a month or two longer.
Julie
Hi Sam,
That would be great for you to turn this into a blog post with the voices of others as well. I will respond more extensively, but wanted to give you a green light on that.
Thanks!
Thank you for the support.
It was a difficult process for the entire community.
Peace.