6 lessons for mental health advocacy from the Google Gigabit Challenge Finale

What Psychiatry and Mental Health Advocacy can learn from the Google Gigabit Challenge Finale in Kansas City

Our business, Wellness Wordworks, was nominated as a semifinalist for Google’s Gigabit Challenge. Our mental health advocacy business plan creates care so efficient that people in distress can pay for it themselves. Wellness Wordworks’ product/service plan will use a video call in support line employing people who have moved beyond their diagnoses to help others get unstuck. We’ll also help people increase their online presence and get online for the first time. Our video based call in line will be a favorite resource for the many people who are uncomfortable with the rapid changes in technology.

Our business wasn’t selected for the finals yesterday because we still have some details to work out about income sources and startup costs. We’ll be ready for the second round – bring it on! I spent all day at the Google Gigabit Challenge Finale Event in Kansas City yesterday. As I witnessed the diverse and exciting presentations, several key points struck me as very salient and applicable to the world of mental health advocacy, which I’ve summarized here.

What mental health advocacy could learn from high power entrepreneurs:

1. Mental health advocacy should emphasize the importance of an occupation.

Jennifer Nugent works in mental health advocacy and employment services at Truman Medical Center

Jennifer Nugent works in mental health advocacy and employment services at Truman Medical Center. Truman is one of the local leaders in providing disability employment services.

A couple of  the Google Gigabit Challenge finalists’ business plans were centered around job-building and skill-building.  One group – the 2nd prize winner, actually said, “Google is really about empowering people.  And what’s the most empowering thing for a person? A job.”

This simple statement rings powerful and true.  Yet, what happens in conventional mental health advocacy?  Speaking to my own experience, the first thing that happened during my hospitalization, after the billing department had obtained my proof of insurance, was that a social worker came out to talk to me about the process of getting on Disability Benefits.

Our founder, Corinna West, had the same experience despite having a graduate chemistry degree and a lifetime of full time work history. Her blog on 7 ways mental health advocacy could ask to cut the budget shows immediate changes that could lower costs while improving outcomes. She shows that providing people early and ambitious help in finding real jobs gets 4 times as many  to work as the psychosocial rehabilitation usually offered by mental health centers. Yet many mental health centers continue to offer these psychosocial programs because they are a cash cow. People’s Medicaid can be billed up 6 hours a day for up to $80 an hour for group activities where one professional “helps” 10-15 service recipients at a time.

2. Peer supporters doing mental health advocacy need to emphasize work as well

Even traditional “peer groups” dismiss the importance of work.  Later as I learned more about mental health advocacy, I would discover that upwards of 90% of attendees in our local support group was on Disability for either Schizophrenia or a Mood Disorder.  Many of these individuals had been collecting Disability since the early years of their diagnosis, and while no one liked collecting benefits, many had no clear plan of returning to work, nor were they helped to develop one.  There were group handouts on mental health advocacy and on how to get on Disability, but never any workshops on how to get back into the workforce, or utilize the time off from work to build a better job fit, or a business for self-employment.

Sybil Noble receives Arts KC's 2008 Volunteer of the Year Award for a lifetime in mental health advocacy. The peer support center she founded, Ark of Friends, just revamped their employment program.

Sybil Noble receives Arts KC's 2008 Volunteer of the Year Award for a lifetime in mental health advocacy. The peer support center she founded, Ark of Friends, just revamped their employment program.

Materials outside of conventional mental health advocacy do discuss the importance of work; it figures prominently in A Way Out of Madness, a book written by two mental health professionals with their own lived experiences.  Nearly every example in that book speaks of a return to occupation as key in the person’s recovery.  This is strikingly different from psychiatry’s typical literature or mental health advocacy groups like NAMI that often have low expectations for people with a diagnosis.   Work, if it is spoken of at all, usually points to “unpaid volunteer work”, while on Disability, or perhaps part-time, low-skilled labor.  But these kinds of expectations keep people in a poverty box, with no view of the horizon, both in terms of their spirit and in terms of their budget.  As Silicon Valley knows, work – especially work with a purpose –  is empowering.  

3. People aren’t “pegs”; they’re complex.  

Another group at the Google Gigabit Challenge finale pointed out that Silicon Valley is constantly trying to innovate technology so that it becomes useful in a way that people need it to be to enhance their daily lives.  Of course technology itself influences the way we live, but that should not be the starting point.  Start-up business models that have tried to change the structure of society to fit the technology that they have to offer are looking at the problem precisely backwards.  Successful Start-ups and the investors that fund them don’t ask how they can make consumers fit what they have to offer.  They start by looking honestly at what’s being done, what’s not working, what the existing need is, and then think about novel ways to innovate and solve the problem.

In many ways, this is diametrically opposed to how the current infrastructure of psychiatric care operates.  Because psychiatric drugs and other “medical” procedures are usually the only modalities psychiatrists are trained in, that is what they offer.  It is up to the patient, then, to conform to their existing system – not up to the psychiatrist to change and adapt.  The DSM-IV, and all previous editions, is a system of trying to turn people into pegs.   Patients who do not achieve success with psychiatry’s standard of care, are then labeled “treatment-resistant” – it is never that the treatment doesn’t work.  The equation goes like this:  Collection of “symptoms” = a threshold diagnosis =  a billing code and a treatment protocol.

It was from Randy Johnson, a leader in Kansas’ mental health advocacy community, that we first heard the joke: Calling someone a “treatment resistant client” means that providers are using “a client resisting treatment.”

4. It’s essential to individualize products and services

Even Silicon Valley understands that people are not programming codes.  Each person is different, each life is different, each relationship dynamic is different.  It follows then, that emotional, mental, and spiritual solutions are equally varied and complex.   Perhaps mental health advocacy would have better outcomes if we all insisted that our providers take an active interest in our lives. We have complex dynamics that require different sets of solutions than perhaps the next person with the same billing code.

That is something those of us who are seeking to change the infrastructure of care need to constantly be looking at, too.  Are we tailoring our services to what an individual needs, instead of trying to tailor the individual to fit our services?  Services that are developed without this kind of mental health advocacy won’t produce success, and they won’t empower individuals to live their best lives.

Wellness Wordworks’ current largest program is Poetry for Personal Power, where we go to universities across Missouri and listen to young people talk about what they do to get through adversity in their lives. It’s different for every person. Here’s Floetic Nette from Penn Valley Community College doing a sweet and profound one minute piece about how poetry gets her through the challenges

5. Mental health advocacy is all about Relationship  and Information-Sharing.

 This is, I think, the biggest takeaway for mental health advocacy.  Silicon Valley was successful, not because of its shiny buildings, or because wealthy people wanted to relocate to the pristine California coast.  What made Silicon Valley more successful than other places competing for prominence in the technology space was a culture of relationship and information-sharing.  Building relationship.

Outdoor couches, nurb

Who is your couch open to? This loveseat caught in front of a "Nurb" tag under the Grand Avenue viaduct leading from City Market to Berkeley Riverfront Heritage Park

I recall that during my very first conversation with Corinna, I asked her to help me organize a dinner party for a radical advocate who was passing through Kansas City on her way to California.  We were brainstorming people to invite to this event, and I thought of other local advocates.  Corinna said, “I think we need to invite bike messengers and poets and gardeners because we need to get outside of people who define themselves as being hurt (or helped) by the system”.  I was really taken aback by this.  Bike messengers, poets, gardeners?  Why would they ever care about mental health advocacy, unless they also defined themselves as survivors of the system in some way?

I now see that Corinna was thinking like a Silicon Valley entrepreneur.  Technology companies don’t tend to stop with applying their technology to one sphere.  We can now purchase anything we want on the internet within minutes, or find a pet, or look at our friend’s house, or write a letter.  Similarly, we need to bring other circles into our own mental health advocacy circle in order to build bridges, build “a way out of madness”.  We don’t do that by preaching to the choir and creating a bubble of people apart from community – in a sense, that is the same thing psychiatry does with its “diagnoses”.

What we need to do is facilitate people with a diagnosis getting back into community again.  We need to help people find a way back to their core identities prior to a psychiatric diagnosis.  Maybe they were a gardener, or maybe an artist.  We can find those people in the community who don’t view themselves or others in terms of mental health (or lack of it) – who are just creating art, going on long bike rides, throwing neighborhood block parties.  This is relationship-building, and expanding our connections beyond what seems obvious.  Something that Silicon Valley has done since the beginning.  In Silicon Valley, there is a culture of cooperation, not just one of competition.

6. And Finally:  Grandiosity is good.

 At one point, a judge remarked that he loved the presenter’s “grandiose” vision.  I had to stifle laughter at a positive use of the term. I’ve heard so many times in mental health advocacy that it’s important to scale back, to not think too big. Our board chairman, Ken Braiterman, was told by the best doctors in New York City that he wasn’t really a writer, that was a delusion, and he was really destined to be a taxi driver. Corinna West’s recovery story was recorded by the National Empowerment Center after she earned an Inspiration Award from Arts KC to ride her bicycle the 221 miles from Kansas City to Omaha, NE for the national Alternatives 2009 conference. It’s shown below in this video called, “Taking Back the Dreams.”

The investors at the Google Gigabit Challenge Finale seemed to particularly respond to business plans that thought about expansiveness. They looked for world-changing applications beyond the original scope of the project, like ours. We may be the first business to make a profit by providing a need services to people with emotional distress without relying of government or charity funding.

Leonardo Da Vinci came up with a sketch and idea for a parachute, full centuries before the first person ever used one to jump without injury.  And come to think of it, many of the technologies we now use daily, would have been written off as insanity even as recently as 20 years ago.  How would you explain to someone from even 2001, the fact that my 8-year old son was able to use his android tablet,  log into the public library wifi network connection, download skype, and use it to call me, all with the light touch of a finger on a screen?  Like the familiar with Apple Commercial goes:

“Here’s to the Crazy Ones. The misfits. The rebels. The trouble-makers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules, and they have no respect for the status-quo. You can quote them, disagree with them, glorify, or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world – are the ones who DO!”

Here’s to the crazy ones indeed. Follow us at @PeerWordworks on Twitter as we revolutionize mental health advocacy on the stage at the next Google Gigabit Challenge event finale.

Wordworks Blog Author: Adinah Caro-Greene

Adinah has advocated for disability rights for over 10 years using her background in financial planning and wealth management. She is a grantwriter and volunteer coordinator for Wellness Wordworks and her mission is empowering individuals with psychiatric labels to pursue their visions by building their own autonomous businesses and income-sources.

1 comment to 6 lessons for mental health advocacy from the Google Gigabit Challenge Finale

  • Jennifer Nugent

    Looks like you have a lot of insight. I agree that employment can be key. More important, you are right that people need to maintain or rebuild their core identity and not succumb to being identified with mental illness or the mental health system.