Action in US

[Ma205]

Wondering if anyone knows of any coalitions that are currently working toward legislative change. I see many movements with benzo's at the state level and with the FDA. It seems that all of the sites that exist and movements for other psychotropics are aimed at withdrawal peer support and provider education, but not on a higher level of changing scope of practice. I am an NP and my medical education did not include obtaining informed consent to prescribe psychotropics, discussing possible harm, recognizing withdrawal vs relapse, and certainly did not include information regarding safe prescribing/de-prescribing. We can target providers on an educational level, but the practice scope and medical prescribing guidelines remain the same. FDA guidelines remain the same. How can we come together and work to not only increase public awareness, but to CHANGE practice at a state level? Im all ears.

[Ariel]

@Ma205

Excellent topic, great question.  I hear you on the need for change in practice. 

 

I'm not in the US and don't have knowledge or experience as to how things work in your country. However -- brainstorming here -- maybe there are state representatives you can contact to present the issues? It's my understanding that government officials have office hours and anyone is allowed to show up and talk to them. 

 

There's also Public Interest Research Group (PIRG https://pirg.org/about/ ) a.k.a. MASSPIRG in Massachusetts (seems based on your profile that's where you are). 

 

If I were you I'd compile a list of all my state representatives, local PIRG contacts, mayors and other local government officials, any liaisons from medical/psychiatric associations/organizations, etc. I'd search online very broadly both in- and out-of-state for any possible points of contact and put dozens of names on my list. Then, I'd methodically contact everyone on my list to ask them who they recommend I contact about the issue in question, soliciting recommendations from them. I'd gradually put together a short list based on the answers received, and then I'd contact everyone on the short list. The idea is to try to keep getting new and better information every time you reach out to someone. It might take a while to figure out who the relevant parties are, you just have to keep making calls and sending emails. The good thing about this process is that every time you talk to someone, whether or not they can help directly, you practice presenting your case; so you get more and more skilled at conveying the necessary information in a concise and compelling manner (a.k.a. the pitch).

 

I'd keep doing this until I got through to someone or some people who are genuinely concerned and can advise more specifically. 

You might also contact people who are already involved in on-the-ground movement for change (Adele Framer, Robert Whitaker and the folks at MIA, Laura Delano, Angie Peacock, Dr. Josef Witt-Doering, Dr. Stuart Shipko -- just to name a few off the top of my head; there are many more, I'm sure!), reach out to thank them for their work and say you want to get involved and aren't sure where to begin, ask them whether they have any recommendations for whom to contact or how to affect change. 

 

I've done my fair share of activism and here are a few key lessons learned: a) patience; b) don't expect to get credit; c) PATIENCE; d) keep going, keep calling, keep asking questions, keep asking the person you're talking to at any given time to refer you to the next person -- make sure you leave every call/interaction with what you need for the next call/interaction; e) keep records, make notes, be systematic about it; f) don't expect anyone else to do the work for you; g) PATIENCE!!!!

 

Activism takes time and a whole lotta legwork. Every little step counts. Break things down into the tiniest of steps. It doesn't matter if you only do one little thing a day, or one little thing per week. It all adds up. Just like in recovery, just like with behavioral change and healing and any process -- it takes time, it's cumulative, and just do what you can with the resources available to you right now. One foot in front of the other, again and again and again. 

 

The good news is that the process is a fantastic way to educate and empower oneself! And through this process we become the change we wish to see in the world. Any additional fruits of our labor are bonus rewards. 

Good luck, and well done for reaching out and writing your original post -- a great first step! 

Keep us posted -- 

In solidarity and support,

A. 

 

 

 

 

 

[Ariel]

By the way, @Ma205

You've previously posted in the similar topic started by @PeaceInside 

Have you seen their most recent post? 

Perhaps you two can work together and exchange info. 

Nobody's going to do this for you -- you've got to roll up your sleeves and do the work yourselves!

And then come back here to spread the word and bring other people on board! 

I'm rooting for you --

In solidarity and support,

A.

 

4 hours ago, PeaceInside said:

Hi, so the only real coalition related to changes in mental health, at large, at all in the US right now seems to be the National Coalition for Mental Health Recovery. Their ability to organize has waxed and waned since their founding in 2006 because of funding (the more they advocate for real change, the less funding they get because of the federal opposition to many of the coalitions aims it seems-for example the Murphy Bill and how that affected and changed SAMHSA's ways of operating and how that impacted advocacy around these issues). I actually met with one of this coalition's founders the other day for another job. Other than that, there does not seem to be a specific coalition related to medication withdrawal and iatrogenic harm - I think a sub committee within NCMHR on this topic would be worth suggesting or another separate coalition that works in solidarity with NCMHR on larger issues would be pertinent - there is no real, coordinated grassroots advocacy coalition building happening in the US on this issue and it is a massive public health issue.

 

[Ariel]

@Ma205

 

Have you read the recently published success story by @madinolympia ?

 

 

At the bottom of the post, @madinolympia writes: 

 

"I reported all of this incompetency and abuse to the state department of health, and there were lengthy investigations, but "no laws were broken." I am determined to fight for new informed consent laws in my state and across the country."

 

Perhaps you could get in touch with them and compare notes? 

 

[Ma205]

17 hours ago, Ariel said:

@Ma205

 

Have you read the recently published success story by @madinolympia ?

 

 

At the bottom of the post, @madinolympia writes: 

 

"I reported all of this incompetency and abuse to the state department of health, and there were lengthy investigations, but "no laws were broken." I am determined to fight for new informed consent laws in my state and across the country."

 

Perhaps you could get in touch with them and compare notes? 

 

 

Thank you so much for all of this advice! I did reach out to all of the coaches and physicians and am awaiting responses. I will look into everything you said in much detail and plan to be contacting a WHOLE lot of people. I think i just re-entered a wave so I may be off for a few day, but I will be back and certainly after 20 years of being polydrugged and my life taken from me I have the motivation to do SOMETHING about this. Stay tuned!

[Ariel]

Hi @Ma205

Sorry to hear you're in a wave. Those are never fun. May it be mild and short!

 

Just wanted to share that I've been focusing my activist efforts on contacting a variety of media outlets. I believe one of the reasons legislative and practice change are lacking is that people are simply not familiar with the issues. I find one of the best ways to raise awareness is to get the information out there via the media. We have to tell our stories!

 

Never underestimate the power of a personal story -- it gets people's attention and speaks to their emotions, incl. empathy and compassion, which is so important in helping people mobilize to support the cause. 

 

One thing I draw inspiration from is the opioid crisis saga. There were people protesting back in the '90s (maybe even earlier), and nobody would listen. It took many, many, many deaths and the widespread sharing of personal stories from all angles -- addiction survivors, victims' families, prescribers, EMTs, police, etc. -- to capture the attention of government officials, lawmakers, etc. The stories kept getting reported by journalists, filmmakers, writers, artists, who all worked and advocated tirelessly for change. They staged protests and made as much noise as possible. It took decades and eventually they got really far and change has been happening! 

 

Our own Altostrata has also been at this for at least 20 years, I think. When she started she was extremely ill in the throes of PAWS and very much alone in a brave, new world that kept trying to deny her experience and shut her down. Alto insisted and did incredible research and persevered, working harder than we can imagine. And thanks to her brilliance, courage, grit, and pioneering efforts, we not only have SA, we also witness real change happening in the world, internationally. For many years, Altostrata was relentless in sharing her personal story, an act of profound generosity and selflessness and, at the time, no doubt necessary in getting people to listen, given the dearth of data. Perhaps now that Alto has come so far with the cause, it's no longer necessary to keep re-telling her own experience for reference. Nevertheless, a staggering legacy has been built on Alto sharing the story of what she's been through. 

 

Back to the media, in addition to contacting various local channels (newspaper, radio, magazine, television, etc.) where I live, for the past few years I've been emailing my story (along with a sort of general introduction to and overview of the cause) to staff at the following American podcasts (selection based on the fact that they all regularly touch upon "mental health" as a topic in one way or another):

This American Life

Serial

Death, Sex and Money

We Can Do Hard Things

Terrible, Thanks For Asking

and more...

 

I've also contacted staff at The Daily Show, Last Week Tonight, Full Frontal with Samantha Bee, and more. 

 

Every time I send an email I feel like I'm doing something in the right direction, no matter how small. And while I don't have any realistic expectation that the story/scandal of iatrogenic harm by psych drug withdrawal syndrome will be picked up, I do believe that maybe once in a while my email will reach some human eyeballs on the other end of the world, and that one person will read through what I've written, and maybe a seed will be planted in that one person's mind, maybe even just subconsciously for a fraction of a second, and maybe that one person will think twice about going on psych drugs or maybe they know someone who's on them and they might feel curious enough to ask/tell their friend and the seed will be planted in that friend, too. I don't know. It helps me to feel like I'm doing something, anything, however ultimately insignificant or symbolic. 

 

10 hours ago, Ma205 said:

I will be back and certainly after 20 years of being polydrugged and my life taken from me I have the motivation to do SOMETHING about this. 

 

It's great to hear you're feeling motivated, and way to go contacting coaches and physicians! Keep writing to them no matter what, don't wait for a reply, just spam their socks off LOL 

Just imagine, if every single user of SA sent one email a day sharing their personal story and advocating for change, that would add up to thousands of emails in no time!

 

Wishing you to feel better soon, may this wave pass swiftly. Remember, healing is happening all the time, even when we don't consciously feel it! Same goes for change out in the world. 

We gotta hang in there and keep going!

In solidarity and support,

A.

 

 

 

 

 

[Ma205]

Hi Ariel,

Thank you for all of your responses. I have been reviewing them with a fine toothed comb. I am wondering if I may read your story that you email to people if you dont mind? I used to be a good writer, but obviously ive had a chemical brain injury so I am trying to come up with how to write this better in a more captivating, but concise way. If you are comfortable with it, I would love to read yours for some inspiration. I think contacting media outlets, podcasts, ect is a great idea. I plan to create a fb group and try to find other people who wish to get in on this with me. I plan on writing to MIA as well.

[Ariel]

Hi @Ma205

 

How are you feeling? 

I hope the recent wave has passed or is easing up for you. 

 

On 5/4/2024 at 8:29 PM, Ma205 said:

I used to be a good writer, but obviously ive had a chemical brain injury so I am trying to come up with how to write this better in a more captivating, but concise way. If you are comfortable with it, I would love to read yours for some inspiration.

 

I can relate to what you describe. I used to enjoy ease of self-expression; it didn't take discernable effort to articulate thoughts in writing. WD has been an experience of hitherto unknown complex cognitive impairment and has made me realize how much I took for granted prior. Nevertheless, I believe it's ultimately good for our brains to practice and get those reps in, it all serves to support and heal the neural pathways in question. It's helpful to keep writing in whatever capacity is available to us, with radical self-acceptance and self-compassion for where we're at in any given moment, without criticism or judgment, only love and unconditional regard. Easier said than done, perhaps, which is why it's a practice.

 

All that to say, I hear you and encourage you to let go of any lingering perfectionism or attachments to perception of how it/one used to be (who knows, anyway, whether such beliefs are accurate, anyway, they may be neuro-emotions masquerading as memory or nostalgia, thinly veiled neuro-self-recriminations, etc.; I am never more brilliant than in my recollections/mourning of past brilliance lost, haha!). Do the best you can today, in this moment, with whatever resources you've got available to you. Keep it simple, make it easy on yourself, take your time, and remember you're allowed to go at your own pace, give yourself breaks, and return when you're ready; repeat this as often as needed, indefinitely. 

 

If/when you write a draft and would like a read-through with feedback, you're welcome to post it here, and if I'm on the site I'll take a look (though I cannot promise where I'm at when the time comes; I do sometimes take breaks from the forum), or maybe another member will step up.

 

I'm not sure it's about the most "captivating", most perfectly worded message or finding the ideal turn of phrase so much as it's about being clear and persistent, sending as many emails and follow-up emails as one can manage. And as I've said before, we can always edit and tweak and improve as we move forward; the key, I think, is the moving forward bit. 

 

Thank you, Ma205, for your interest in my story. You are welcome to it:

 

In solidarity and support, sending healing vibes,

A.

 

[Ariel]

Hi @Ma205

How are you going?

 

On 5/4/2024 at 8:29 PM, Ma205 said:

I used to be a good writer, but obviously ive had a chemical brain injury so I am trying to come up with how to write this better in a more captivating, but concise way.

 

The topic below includes at least 4 different examples of template letters of evidence to doctors/psychiatrists/therapists informing them about withdrawal syndrome. 

Feel free to copy and borrow from any template to put together your own letter(s) of evidence. 

Maybe a place to start?