One of the best keynote addresses I have been to in a long time was Marca Bristo‘s telling of the history of the disability rights movement at the Society for Community Research and Action biennial conference in Chicago. I came into this conference kind of irritated at the psychologists because I’ve seen the research that peer provided services are very effective and often cheaper than services provided by professionals. I wasn’t looking forward to a whole conference by and for the Ph.D. type people. I wouldn’t have attended the conference at all if I it hadn’t been part of my research contract with Wichita state university to do our story project.
Then in my first workshop the presenter started talking about “severe mental illness” and “high functioning people” and “schizophrenics,” which all are outdated labels. Now we use people first language, we believe that recovery is possible for everyone, and many of us in the mental health civil rights movement try not to use “mental illness” words at all. The workshop I was in was about empowering marginalized populations. At the end, this guy in the audience got up and said, “I don’t think that people that are mentally disabled and mentally defective ought to be considered marginalized populations like we count ethnic minorities or gender minorities or other groups that have been discriminated against.”
So that’s when I let loose and said, “Well, we’ve been sold medications that often doesn’t work just so the medical establishment can make money off us, we’ve been given brain damaging shock treatments, we’ve been locked up for years and lifetimes, we’ve been sterilized, and even now we are the poorest of all people in the disability movement.” The guy was a little taken aback but he definitely stopped arguing that point. This is basically the story I have told in my disability industrial complex poem.
So I was in a fairly foul mood when it came time for the keynote, but I was cheered up a little bit by the completely stunning auditorium at Chicago’s public library. Then Marca Bristo captivated me with her story of advocates that got together and worked to pass the Americans with Disabilities act and how people with disabilities have banded together and made a difference. She said that the average American will spend 10 years with a disability as people are living longer and getting more age related disabilities. One of the ways our society can address this is with universal design, creating physical spaces and building that work for many different kinds of people.
Marca talked about how advocates banded together and formed this complete civil rights movement. She talked about Justin Dart, one of the heroes in the cross disability movement. People were trying to split out the psychiatric disabilities from the mobility, sensory, and intellectual disabilities. Some advocates thought that the ADA was less likely to pass because people wouldn’t support the psychiatric disabilities. But Justin Dart stood up and said, “This is the same kind of divide and conquer tactic that the rest of society is trying to do to us. We need to stick together. Without all of us, there is no ADA.”
Marca even mentioned that one of the key issues right now in the psychiatric disability community is that we are strongly questioning the medication only approach and finding much research now to show that other methods are much more effective. She even mentioned respite care centers, alternatives to hospitalization, and peer support. I was really excited to hear that she was interested in the cross diability movement. Many of the government funded organizations that are set up to help people with disabilities are not supporting people with mental health diagnoses. Locally, The Whole Person and Coalition for Independence have made some efforts although not without internal criticism from staffers. Nationally, American Association of People with Disabilities is working to bring the two groups together.
At the end, I was so excited that she’d brought up some of my concerns that I stood up and got the first or second question in. I asked, “How can practicing psychologists, people with Ph.D.’s do to help promote the rights for people with mental health diagnoses?”
She said, “First, always take the opportunity to use your degree as a pulpit to stand up for situations that are wrong.” She talked about her conversations with people in our advocacy movement who showed her data that shock treatment or ECT may be a highly suspect therapy. She said, “Join advocacy organizations, bring disability advocates into your organizations, and come to our conferences.” Many times the voice of people with disabilities is absent in the debates around our issues, and instead medical providers, caregivers, educators, and researchers are speaking for us. Even some of the disease based national advocacy organizers are not truly representative of people experiencing difficulties, but instead represent family or other stakeholder interests.
But the last thing she said is the most important, the title of this post. She said, “Help us get our outcomes. We know that living at home with a personal care attendant is what most people want, promotes better outcomes, is more humane, and costs 1/3 as much. But we need data to support this. Help us evaluate our programs. We all have programs that help people, but we badly need research evidence to show how well these programs are working.”
Mental health advocates have been saying for years that peer run crisis alternatives are much cheaper than mental hospitals. Peer support centers have much better outcomes than day programs run from mental health centers, which tend to simply be cash cows for the mental health centers to bill Medicaid for people to hang out all day. (I’ll get these references soon.) Warmlines are much cheaper than crisis lines because of reduced staffing costs, and up to 80% of crisis line calls are non-emergency. Also, peer services result in less referrals for crisis services because most peers have felt suicidal at one point or another and it’s not so scary for us to talk about it and to sit with it to see what happens next.
Recently Kansas decided to cut complete state funding for the statewide consumer advocacy organization, and to cut funding for their peer support centers by 3% and require each of them to competitively reapply for funding. In a meeting at the Kansas Recovery Conference, a state rep said, “There are more cuts in the future. Our economic situation is not changing in the near future. We badly need data on how effective these programs are in order to justify more funding for them.”
But the good news came in the very last day of that conference in Chicago. I had started talking to as many psychologists as possible at this conference, even though they were about half as likely to buy my poetry as mental health consumers. Five editors of five different research journals came to present about “How to publish your research.” They said, “We want more community research, more research from peers, more stakeholders and first person reports. That’s what our journals were created to publish, but we’re not getting enough of those kind of studies. Send them in.”
So, researchers, we want you!
People in funding organizations are starting to realized that peer provided services are at the cutting edge. More and more funding is becoming available for this kind of research, including SAMHSA’s Brass Tacks program, which is designed to find locally effective recovery oriented programs and help spread them into national replication. NIMH’s website, for the first time that I’ve seen, has the word “recovery” on their front page. They even have some grants available for “behavioral” and “comparative effectiveness” research. More and more people are realizing that if our society has a problem with over-reliance on medications, then just finding new medications is not the answer. We need to change our approach from an deficit and disability model to a wellness approach, where people learn how to support themselves and each other through difficulties.
And, if you want to partner with me, let me know. I have seven ideas so far of projects that would be close to publication. I want to find a collaborator who knows about statistics, informed consent, study design, and data evaluation. I’ll put in the knowledge of local advocates who will share experiences, the recovery literature, and solid understanding psych med mechanisms using my masters degree in pharmaceutical chemistry, and we can work together towards lots of publications.