Giving Voice to People with Lived Experience of Mental Health Conditions
Dr. Daniel Fisher talks about the crucial need to allow people with mental health conditions to speak for themselves.
By Maddie Walsh
The National Coalition for Mental Health Recovery (NCMHR) is a coalition of advocates and organizations representative of people with mental health diagnoses. The overarching priority of NCMHR is to advocate for a recovery-focused mental health system that prevents crisis, protects rights, and promotes social justice, wellness, economic empowerment, and social inclusion.
In an interview with Northwestern Law Center for Racial and Disability Justice’s summer intern, Maddie Walsh, Fisher discusses his journey in founding the National Coalition for Mental Health Recovery and the critical need to center and listen to the voices of people with lived mental health experience.
What led you to be a part of the National Coalition for Mental Health Recovery?
I am one of the founders of the National Coalition for Mental Health Recovery. For many years, myself and other people with lived experience of mental health conditions wanted to start a national organization, but we had conflict between two ends of the spectrum as far as the politics of mental health. Some people identified themselves as survivors and felt the whole system needed to be torn down and started over from the perspective of people with lived experience. Others identified as consumers and said we just need more of the same services, yet they were not critical of the actual content of the services. I identify more on the survivor end, but not completely, because I am both a psychiatrist as well as a person with lived experience. I try to bridge between the two groups and think they both have validity.
In 2006, the critics of our movement became so loud and powerful that I feared the gains we made in our movement would be lost. So, I called a few other leaders in our movement, specifically statewide organizations. I decided that we needed to organize organizations because we tried to organize individuals before, but that’s very difficult. That’s why we call it a coalition. At the time, I was CEO of the National Empowerment Center and received a grant from the Public Welfare Foundation to form a mental health coalition. The two-years of funding allowed us to start NCMHR to give a national voice to our movement at a political level and educate Congress and the Senate.
To form NCMHR, I contacted about 14 statewide organizations. I knew the leaders of these organizations and had worked with them for a number of years. I realized that some states had well-developed statewide consumer-run organizations, yet others were very poor or did not have a consumer-run organization at all. For instance, Maryland, and the early leaders in California, Vermont, and Ohio at the time had well organized statewide organizations, so I reached out to them. They were the first 4, and then we reached out to another 10. I said to them: “We either hang together or we hang apart.” The idea was we needed to get together and form a coalition, or we would lose. We then set up a board.
What is the National Coalition for Mental Health Recovery?
The National Coalition for Mental Health Recovery is a coalition of consumer-run mental health organizations and the national scope that we now represent is about 27 states. It is a coalition, so each organization has its own identity. Autonomy and self-determination are very central values to our movement. We try to be very respectful of each of NCMHR’s member organizations and truly listen to them. Our mission is to give voice to people with lived experience, so that we speak for ourselves.
In DC, until we had this coalition, there were other groups who said they spoke for us, people with lived experience. NAMI, for example, said they spoke for us, but truthfully, they speak for parents. Parents have a different agenda than people with lived experience. And professionals said they could speak for us, but we need to speak for ourselves.
Can you explain what your role is as a part of this organization?
Until about two years ago, my role was Chair of the National Coalition board. I was the Chair for fifteen years, but two years ago decided to turn the role over to another younger leader. Braunwynn Franklin was selected by the board and accepted. I stayed on as Vice Chairman of the board and my major role has been helping organize the Alternatives Conference. Other than that, I am a member of what we call the Executive Committee of the Coalition, which consists of myself, Braunwynn, and Anthony Fox, a member of the board.
What other organizations are you involved in and what is your role?
I am still involved with the National Empowerment Center. I started the National Empowerment Center in 1992 and its function is to provide information about how people recover. Our main mission has been to get across the point that people recover from even the most severe conditions. I was in this role for 30 years, but turned over the role about a year ago.
I remain Chair of the board of the National Empowerment Center. I am on the steering committee of an organization called the National Disability Leadership Alliance (NDLA), which is a disability alliance made up of 17 national disability organizations. The National Coalition for Mental Health Recovery is a part of NDLA. The uniqueness of this alliance is that it only consists of organizations run by people with disabilities, so it isn’t someone else speaking on behalf of people with disabilities.
According to sinsinvalid.org, at least half of people that are killed by police have psychiatric disabilities. How does this organization plan on changing that narrative?
We are still developing a more direct plan, but one thing is we try to change the narrative around violence and mental health conditions. It’s very hard to directly intervene with the police. One of the reasons I believe that police fire at people with mental health conditions is that they believe that people with mental health issues are more dangerous than the general population. And that’s just not true. So, we’re trying to educate the police about that. We have tried to reach out to the police around a program developed by a group of people with lived experience called emotional CPR. The idea came to us that there’s a need for the public to feel more comfortable interacting with people in distress. I think a lot of the perception of violence and the stigma comes because people are afraid they can’t talk to somebody who’s in another reality. They don’t realize there’s still a person there. They treat them like an object, like an animal. When I was in an altered state, I did interpret what I heard from an incorrect perception and at times I would misperceive things or take people too literally. However, I could hear and I could understand part of what was being said.
I think the police would learn a lot from emotional CPR because it keeps in mind the question of what did we most want when we were in distress. When developing emotional CPR this is the question that we kept asking ourselves and we realized that the things we wanted when we were in distress weren’t surprising. They were what everybody wants: we wanted people not to judge us and not try to fix us. Instead we wanted people to be with us, to feel our feelings, and be emphatic with us. We wanted people to believe that we have the capacity to heal.
And none of this happens right now. The usual approach to dealing with people in crisis or distress is a very dehumanizing approach. We’re seen as objects, not as subjects. We’re seen as not fully human. It’s almost purposeful. I think the system and society puts us in that position because then they can do things to us — take away our rights and freedoms — without feeling guilty because we’re judged to be not fully human.
This blog post was written by the Center for Racial and Disability Justice’s summer intern, Maddie Walsh.
The Northwestern Pritzker Law Center for Racial and Disability Justice (CRDJ) is a first-of-its-kind center dedicated to promoting justice for people of color, people with disabilities, and individuals at the intersection of race and disability.
Learn more about CRDJ by visiting the Center for Racial and Disability Justice webpage.
