Alexander Hamilton once remarked, “When I have a subject in hand, I study it profoundly. Day and night it is before me. My mind becomes pervaded with it.”
I can easily relate to those words, especially when I look back over the past 25 years since I was first introduced to Borderline Personality Disorder. In the course of studying BPD as we developed a comprehensive educational video series, If Only We Had Known: A Guide To BPD, it became clear that people from minority communities have largely been excluded from BPD research and access to clinical services. Turns out that has been the case with most every other mental health disorder. But that may be changing
First, a bit of background on the issue of mental health discrepancies among people from minority communities: black, indigenous and other people of color.
In 1999 the Surgeon General of the US, David Satcher, MD, (himself a Black physician) published a landmark study: “Mental Health: A Report of the Surgeon General”. That report sharply focused on the widespread lack of services, research and support for mental health among minority populations.
In 2008, the National Alliance on Mental Illness (NAMI), one of the largest mental health advocacy groups in the US was instrumental in the passage of a bill by the U.S. House of Representatives that designated the month of July as “National Minority Mental Health Awareness Month”
In July of 2017, NAMI issued a related press release: “Eliminating Mental Health Disparities by 2020: Everyone’s Actions Matter”,
In light of the current debate on racial inequality NAMI posted a subsequent press release on July 1, 2020 to remind people about the importance of this initiative.
Unfortunately, in the 21 years since the publication of Surgeon General’s report little progress has been made. Hopefully, recent efforts to raise awareness of the gaps that define the experience of minority populations in societies rife with non-inclusive practices and priorities will be made smaller and mental health services will become more widely and affordably available.
For those of us at #BPDvideo.com the timeline of these events closely parallels the history of our work in the mental health field, particularly our focus on Borderline Personality Disorder.
In 1995 we were hired by Guilford Press, the publisher of Marsha Linehan’s groundbreaking book on treating BPD. That book describes in detail the new treatment she had developed for BPD – Dialectical Behavior Therapy, or DBT. Guilford wanted to support the book with an companion educational video. We had an existing relationship with Guilford, a series of educational videos about ADHD that was quite successful. They were hoping to duplicate that success with Linehan’s book.
The project introduced the new reality that there was now a therapy that appeared to be more effective at treating BPD than anything else available. We were also motivated by the fact that BPD has a fairly high prevalence in the U.S., with as many as 6% of the population meeting diagnostic criteria for BPD at some point in their lives. Out of a population of 350 million, that’s more than 20 million people who have or had BPD – an astounding number.
It didn’t help that BPD was also the most stigmatized of all mental illnesses; to the point of once being referred to as “the leprosy of mental illness”. The result of all this was that most people and many professionals knew very little about BPD, such as: What is BPD?, What causes it?, How is it diagnosed? And, importantly, How it can be treated? In other words, very little was known about an illness that was affecting so many people.
In time DBT became more available as did other BPD specific treatments. Admittedly, access to care was and is still limited but improving. People who were previously undiagnosed or misdiagnosed now at least had an idea of what was causing the emotional turmoil that dominated their lives. Unfortunately, that has not been the case for most people who are members of minority communities.
There are two advocacy organizations that provided us with critical support as we developed the BPD educational video series: The National Alliance on Mental Health (NAMI), and the National Education Alliance for Borderline Personality Disorder (NEA-BPD). NEA-BPD introduced us to many leading academic researchers and clinicians as well as numerous participants in their Family Connections educational program. Similarly, NAMI provided opportunities to speak at several national conferences as well as state and local meetings where we were able to show the work in progress and get critical feedback from attendees about the value of the program during its development.
That support ultimately led to us receiving a series of grants from the National Institute of Mental Health (NIMH) that financed the production and field testing of If Only We Had Known: A Guide to Borderline Personality Disorder.