As many of you know Bring Change 2 Mind was featured on the recent Extreme Makeover: Home Edition on November 4th on ABC. Gina and Allen Hill and their sons were the recipients of a new home, built in Kansas in the hottest month they have had in many years. Glenn Close, the Bring Change 2 Mind executive director, board members and volunteers were there to give a hand and welcome home the Hill family. Gina was already part of BC2M having worked as one of the first volunteers for the organization. This episode provided a glimpse into the lives of a family who is living with the effects of PTSD. I had the honor to be on the site during the week of the build and I heard stories from so many people who were also affected directly or indirectly by a mental illness. I read the outpouring of gratitude on the BC2M Facebook site and the stories and emails that are arriving daily. The first cry is, “I am part of a community of people who understand what I am going through.” The second is, “Thank you to BC2M for being an organization with a goal to eliminate the stigma surrounding mental illness.” People write, “Maybe now my family will understand.” “I told people that I have mental illness for the first time.” “My son is living with a mental illness and maybe our friends will be more understanding.” These are just a few of the response we have received after the airing of the episode featuring the Hill family. Finding community is the first step. I invite you to take a few more steps with us.
I am a professor in the field of disability including mental health conditions. From my research and education I know that self-determination is extremely important to resiliency and stability. The definition I use is “”the ability to identify and achieve goals based on a foundation of knowing and valuing oneself”. This includes these components: know yourself, value yourself, plan, act and experience outcomes, and learn (Field & Hoffman). I thought self-determination was enough but my daughter Linea has taught me that there is much more.
When Linea was first hospitalized and finally diagnosed with bipolar disorder our lives turned upside down. Although I taught my graduate students about bipolar and had worked with adolescents diagnosed with this illness I didn’t really “get it” until we were in the middle of our own severe crisis. We almost lost our daughter to this disease and it took many traumatic turns and upsets to finally get to the point where we could move forward with Linea in the lead. Her first experience (and therefore ours) of the inequity and social injustice of mental health care came after seven hours in the psychiatric ER in Seattle’s trauma hospital. When a bed was finally found for her we left many patients behind to spend the night on gurneys in the halls because there was no place to be found for them. The majority of these patients were men; men of color, poor and mostly homeless. It was not fair. As sick as Linea was she said, “We have to do something.”
Over the next few years she moved forward to stability and she took the words of Kaye Redfield Jamison to heart. We met Kaye at a book reading in Seattle and she said, “People who are stable and doing well don’t have to tell anyone.” So the public mostly sees people who are not doing well. Those who can’t afford medications or the doctors to work with them to adjust and tinker until things are better. Those who are too exhausted and overwhelmed to make a phone call or follow-up with the next step of finding help and have no one to step in and make the call or go with them to an appointment. Linea knew that she was privileged in her care, her support system and her ability to articulate her needs. We all knew that because of our resources, advantages and simply the luck of the draw we needed to speak up for those who could not.
Linea began to speak with me at conferences and symposiums around the country and soon on her own. She had the opportunity to attend the Fountain House Symposium where Glenn Close received a humanitarian award. Linea sat with Glenn and Former First Lady Rosalynn Carter and other dignitaries while they talked about mental illness. Linea had felt that she was the “only one” and that being with these very influential and highly respected people who were speaking out about stigma and isolation as well as the need for more resources and treatment changed her. She was no longer alone but part of a larger community and one that was committed to change. Jessie Close and Calen Pick are not only inspirations but close friends. The BC2M volunteers joined her circle of support. Her advocacy work has only grown as she has gained more skills and contacts. She had the opportunity to speak on a panel with Representative Patrick Kennedy for One Mind for Research. She is now in Geneva, Switzerland, interning with the World Health Organization and learning about human rights violations around the world in mental health care and what can be done to change this.
I have traveled with her on this journey from patient to advocate and to her rapidly growing sense of empowerment as part of a larger community. I absolutely believe that this has been a crucial part to her stability. She has confidence that she can take care of herself and ask for help if needed. She is honest with the world about her illness but doesn’t let it define her. She is learning about injustice and is taking whatever small steps she can to join a human rights movement to eliminate stigma and assure treatment for people with mental illness.
Linea has taught me that we all must work together and that being part of this movement can be a part of recovery. Not everyone wants to speak on such a large stage but everyone can speak up in their own homes, neighborhoods and communities. Sign the BC2M pledge and ask people who do not have a mental illness (if you can find anyone!) to do the same. Push back at your insurance company to assure parity coverage for mental health care. Help someone else if they are too ill or discouraged to do so. Join local, state and national organizations that advocate for equity and treatment. Most are partners with BC2M and can be found on our webpage. Make a small difference. These together add up to big differences. We have over 18,000 people on BC2M’s Facebook. Let’s each do one thing this week to eliminate stigma, increase understanding and push for justice, equity and treatment for the many people who have a mental illness and are not receiving what they need. Let’s MOVE THAT BUS together.