This is the final segment of my interview with Mary Giliberti, the new executive director of the National Alliance on Mental Illness. As explained in parts one and two, I submitted my questions in writing and she replied in emails because of a personal scheduling problem that prevented me from meeting with her during her first week in office. I want to publicly thank Director Giliberti for taking time to answer my questions and I want to wish her the best, as a NAMI member, as she leads our organization forward.
Question: What do you see as the most important issue facing NAMI today?
Giliberti: We currently have systems that fail people with mental illness in healthcare, mental healthcare, education, housing, employment and criminal justice. We have too many people that are experiencing terrible outcomes and no one is held accountable. In fact, the incentives are often completely the opposite of what they should be.
Within our community, we have to come together to make progress towards our broader, shared mission. We must work together to fight the real battle—a society that by-and-large does not understand mental illness and has neglected to identify it as the priority it should be. We have to be strong to be able to change this and make mental illness a priority. There is much more that unites us than divides us.
In the short run, I will strive to help NAMI move forward with a clearly articulated vision and a strategic plan with specific goals to guide our work. As part of that process, I will engage with NAMI members, our state and local NAMI Affiliate leaders, our national staff, thought leaders in the area of serious mental illness, major supporters and others touched by mental illness with the goal of introducing myself, learning from them and developing a common understanding of the path ahead.
In the longer term, I will know that we have been successful when NAMI becomes identified not just as an organization, but also as a movement.
Q: As executive director, what do you see as the national NAMI office’s role in relation to overseeing and governing local NAMI groups?
G: From my previous tenure at NAMI, I know some of the best practices and innovations emerge from the grassroots. We must allow the spirit of this innovation to continue and support NAMI State Organizations and NAMI Affiliates in the important work they do. For this to happen well, we need some standards in place that are not overbearing.
We have a role as a national organization and we charter NAMI State Organizations and grant affiliation to local NAMI Affiliates. We have a process to move us to a healthier place that will ensure that we are able to meet the needs of individuals and families while maintaining our unique grassroots traditions. We are all in this together.
Q: When incidents such as the mass shootings in Va. Tech, Tucson, Aurora, Newtown and the Navy Shipyard happen, will you respond quickly as NAMI’s voice or cautiously?
G: NAMI has always responded quickly to tragedies such as these and will continue to do so. We respond to ensure that the public’s understanding of mental illness is expanded, that reporting is reasonable and complete, and that it includes the compassionate perspective of the lived experience.
It’s not easy to see over time, but there have been some changes in how the news media reports tragedies. The media now also discusses the relationship between violence and mental illness more responsibly, emphasizing that while a small subset of individuals may become violent, the great majority of people living with mental illness are not violent.
Q: How do you intend to bring younger people into NAMI and expand its membership?
G: We will bring younger people into NAMI and expand membership by meeting and speaking to their unique needs. We have seen tremendous growth in our NAMI on Campus program, which represent and serve hundreds of young adults. We are also using social media and thinking very carefully about how a younger generation communicates, responding in ways that meet their unique needs.
Q: Are there specific ways that you think your leadership will differ from Mike Fitzpatrick’s?
G: During my previous tenure at NAMI, I worked for Mike Fitzpatrick and appreciate his strong leadership. Mike came on at a time when we needed him. He did wonders to foster growth and strengthen and stabilize the organization. I want to continue progress and am beginning my work by listening and learning so I can do that effectively as we move forward.
Q: Please tell us a bit more about you personally so that we can know more about you as an individual than what has been published in your resume.
G: I have a passion for NAMI and an ingrained belief in our mission. Several personal experiences have shaped this belief.
When I was in college, one of my roommates attempted suicide. She died by suicide shortly after I graduated. This was my first experience with mental illness and I learned that these were matters of life and death. I also saw the stigma around mental illness and the change in the way she was perceived. It seems naive now, but I was shocked when she was referred to as one of those “crazy students.”
When I went to law school, I began representing people with mental illness in our disability law clinic. I represented individuals in psychiatric facilities, people seeking social security benefits and children who needed special education services. In each of these experiences, I saw that my clients were not given the same respect as others because of their illnesses and systems did not respond well to their needs. This set me on the path to advocacy.
As the years went on, I continued to hear stories from individuals and families. There are few things as heartbreaking as talking to a mom who has given up custody of her child because she could not get the services and supports she needed in her home. And there are few things as life affirming as attending an art gallery opening for clients of an ACT program who had created beautiful photographs. Often the difference between the calls of despair and the moments of triumph could best be explained by whether the individual and family had access to services, supports and guidance and that is what NAMI is all about.
All of us as NAMI—NAMI, NAMI State Organizations and NAMI Affiliates and members—work together in support of our shared mission. This dedication and collaboration, whether it is in policy, education, awareness or support, is what makes NAMI so strong.
Q: What do you think the biggest challenge facing NAMI is today?
G: America needs NAMI now more than ever and we are poised to provide common-sense solutions to the challenges we face as individuals, families and communities. As NAMI, we must unite around our mission. We have a long way to go to ensuring America’s recognition of the need to address mental illness and respond to people with the compassion, care and help that is needed.
Q: What innovative and fresh ideas do you want to introduce as our new director?
G: I think it is important to start by listening and asking questions, rather than coming to the job with preconceived answers. I have lots of ideas I am exploring, and I intend to listen and engage to inform and shape these ideas more fully. There is no doubt that we are in the midst of a changing health care environment. It is clear the mental health care system, as we know it, will look different. How do we position NAMI in a way that is beneficial to helping ensure that individuals and families have the help they need, and recovery is a reality?
Q: Are there any issues that you would like to address that I have not asked?
G: I am surprised that you did not mention research. For example, it is a sad reality that we seem to be no closer to identifying the causes for schizophrenia than we were years ago. And for all we know about psychosis and the fact that individuals with mental illness report symptoms years in advance of a diagnosis, access to early identification and intervention are, along with our understanding, limited. I would like to see NAMI recommit to a focus on ensuring more funding for research and an agenda that promotes new understanding, treatments, and technologies for improving outcomes.
And in support of all that we do at NAMI, including our public policy advocacy, education programs and support groups, we must continue to raise public awareness so that social and political will are enhanced. NAMI has a unique role in ensuring that America embraces an understanding of the importance of mental illness. This includes raising awareness of and addressing the disparities of health and mental health for people of color. As we say, mental illness affects everyone. It is time that our nation unites behind this as a priority, and NAMI is poised to lead the way.