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The future of mental health social media #mhsm

Opening session of mental health social media conference

Opening Plenarary Session

More about my mental health social media business.

I just returned from the National Health Care Messaging and Media conference. I got a scholarship from SAMHSA to attend based on my mental health social media skills and work with two different states. Right now my biggest program, Poetry for Personal Power, is funded by SAMHSA, so I’m letting  you know this in the interest of full disclosure. Also so you how crazy I am by criticizing them because I might be biting the hand that feeds me. But I do feel better about it, because this afternoon Rosie Anderson-Harper from the Missouri Department of Mental Health says, “Well, that’s what we all love about you – you’re a rabble rouser. But in a good kind of way.” I need to write a blog sooner or later about how much I like being my own boss, too, because being the Creative Director of my business means I approve my own mental health social media rabble rousing.

I didn’t really know what I’d be getting into with the conference but I figured out pretty quick that what was going on is that there a lot of state and federal health organizations that put out messages like, “Don’t smoke,” “Don’t do drugs.” “Deal with obesity,” “Get your feet checked if you’re diabetic,” “Wear your seat belt,” etc. All those kind of things that have been the background noise of much of American media output for a long time. It turns out that most state and federal governments don’t have enough money or time or skill or whatever to assemble these messages, so they hire big contracting corporations. These corporations were sponsoring the conference and doing many of the presentations.

Olympic homecoming for health care social media conference

The statue in Centennial Olympic Park right at Sundown. First time I'd been back in Atlanta since competing in the 1996 Olympics.

I learned a ton at this conference about mental health social media. Here are some of my highlights. I’m going to break these down into separate blog posts to come out over time in the next few weeks or so.

What I learned about mental health social media at the #hcmmconf.

1. My Olympic Homecoming was much emotional and exciting than I expected. I fought on the 1996 Atlanta Olympic Judo team and “Because I Can,”  my Olympic poem is my most watched poem of all my You-Tube posts. I plan to re-edit it soon using all my competition highlights that I just got digitized as well, now that I’ve figured out how to edit videos. Thanks to Vaughn’s Computer Central for helping with my memory issues as well.

2. It’s possible to do a bootleg poster presentation. I saw a lot of empty poster hanging walls up and just grabbed one of them and put my materials up on the wall. I got my sign in sheet out and started talking to people and telling them about my business. I even sold five poetry CD’s. I just wish I’d brought a better banner or signs.

Bootleg poster presentation at mental health social media conference

My bootleg poster presentation - I just grabbed a blank wall and went for it.

3. SAMHSA needs to conduct a national review of the long term effectiveness of psych medications. Currently more and more research is starting to question this assumption that has gone into mental health care for the last 30 years. We need to have a national, open and honest debate about this topic. SAMHSA is ideally positioned to conduct this debate since they listen to more recovery advocates than other organizations like NIMH who try to ignore our presence. I asked during the opening plenary, “What do we do if we’ve been giving out a social media message and it turns out to be wrong?”

The answer was, “You have to be honest. When the facts change, the message has to change.” It’s time to do a serious evaluation about the honesty and efficacy of medicating every person with a psychiatric label for the rest of their lives. There is so much evidence on the side of complete recovery and more and more evidence showing serious problems with medications.   We need the mainstream mental health social media community that is totally pro-med to address the radical mental health social media community that is totally anti-med. SAMHSA is ideally positioned to forge a common ground in the middle showing that medications help SOME people but not everyone, and that many people do better off medications. This is a more evidence based mental health social media message.

4. Calling mental health behavioral health is inaccurate and insulting. I know that this is a compromise mental health social media term to include substance use as well, but I never chose to have my emotional difficulties that landed me in the psychiatric system. I never “behaved” in a way that got me sick, except that I had to learn a few behaviors to make me well, like exercising and eating well. Substance use may be a behavior, but mental health issues are not. I tell you what is behavioral health – heart disease. I tell you what is behavioral health – Type 2 diabetes. Those issues directly come from people’s behaviors.  Mental health issues do not. Susan Rogers said, “Every time they lumped substance use and mental health together, it grated on me. That’s stigmatizing to us. I’m not a substance user.”

The SAMHSA table at mental health social media conference

I found myself at the SAMHSA table during this sumptuous dinner at the Georgia Aquarium.

5. SAMHSA is really pushing screening hard.  Given the current huge use of psychiatric medications in our country, and the growing doubts about their long term effectiveness, this can be a huge problem. For every story that SAMHSA tells about people that have benefitted by being diagnosed and “treated” by the mental health system, I can give them three stories about people who learned that the diagnosis and medications themselves were the most damaging parts of all. I told Mark Weber from SAMHSA and a woman from the Carter Center, “As long as we’re not being honest that mental health treatment harms some people, we’re not going to be able to reduce stigma in this country.” Sure screening doesn’t have to be about diagnosis and labeling, but that’s the modern paradigm of care. Are problems with labeling discussed in screening tools? Here are SAMHSA’s 37 mental health screening tools, and if someone has time, tell me how many times they use the words, “overmedication,” “iatrogenic,” or “medication discontinuation syndrome.”

6. SAMHSA is really pessimistic about the long term growth of mental health disability. SAMSHA is forecasting that mental health “disorders” will be the leading cause of disability by the year 2020. This doesn’t need to happen. If we create systems that promote full recovery, we can eliminate many mental health disorders. The Open Dialogue method in Finland has almost completely emptied their mental hospitals. We can greatly reduce disability with effective treatments. If disability is increasing, then our current treatments must not be that effective.

7. In physical health care we are countering corporate marketing propaganda. In mental health social media we are spreading it. Most of the other social messaging work described in the conference was about countering tobacco marketing or marketing of syrupy drinks, or marketing of alcohol. Instead, in mental health social media, most of the governmental agencies and  the mainstream mental health advocacy organizations like NAMI, DBSA, or Mental Health America instead do their work to spread the pharma industry line that “All psychiatric medications are effective and well-tolerated.” The Child and Adolescent Bipolar Foundation, one of the mental health social media groups that heavily pushes diagnoses and labels, had a blog about how kids can get themselves diagnosed even when their parents didn’t want them to.

Entering the Georgia Aquarium

Entering the Georgia Aquarium

8. Policy change and cultural change for young people must have completely different mental health social media campaigns and participants.  One of the most well thought out and researched programs that I heard was from Jeff Jordan, who started Rescue Social Change Group when he was 17.  He said that you can either affect policy change, or cultural change. Policy change can be done by the “clean cut, preppy, ambitious” young people that are good at talking to adults, interested in volunteering for us, and want to make a difference for other young people. But these kids are not at risk.

The at risk kids are “cool kids, highly interested in what their peers think, and very involved with youth culture.” He said these kids will have nothing to do with a policy change campaign. He has designed many cultural change campaigns that are on his website, mainly where they bring “cool” people into bars to talk about anti-tobacco messaging. He said the two campaigns have to look and smell and feel totally different. He said you can either do one kind of campaign or the other kind and if you want to do both you have to do two separate campaigns. He said it’s like people who eat healthy food and people who eat fatty food. If you prepare a salad and then put a bunch of pork rinds on it, no one is going to eat it. You can’t meet in the middle with your campaign because then no one will listen.

Al Cunningham, "Dr Condom" with his poster presentation. His wasn't bootlegged at all.

9. I can get a certain amount of work done while listening to a presentation. I learned that I can bring my laptop into a presentation and do mental health social media job tasks that just require a lot of clicking and pasting. It’s fine as long as they don’t involve a lot of reading or writing. I need a better battery, though, because finding a plug in is kind of hard.

10. The Twitter side stream was good for connecting and documenting the conference. I met people via Twitter, found people recommending presentations by their friend. I saw what other people were getting out of the conference. I was able to see a link to download the entire twitter feed for the whole conference. It was the “meta-conference” going on. I still can’t figure out why so many people were up tweeting at 5 am, though. I didn’t know so many people got up at 5 am. NOT me.

11. Not too many people know what a social entrepreneur is.  Beverley Schwartz from the Ashoka foundation did this incredible inspiring presentation to sum up the conference and asked the 600 or so people left if they thought of themselves as “HealthCare communicators.” Most of the hands went up. Then she asked if they though of themselves as “Social media experts.” Only about half of the hands stayed up. Then she said, “How many of you are social entrepreneurs?” Only about ten hands went up. Then “How of you want to be social entrepreneurs?” About twenty hands went up.   Well the Unreasonable Institute has 10 characteristics of a successful social entreprenuer, and I’ve got all ten of them, especially not doing well in a beauracracy.

12. My business is on the right track. I’ve been getting some great feedback from people I’ve talked to, getting grants approved, building more collaborators, and even being selected for this scholarship shows that I’ve learned a lot about building my own business.

It was a great mental health social media revolution building conference.

 

 

 

 

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