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Long-time Bay Area mental health organization confronts stigma of hoarding, calls for advocacy at UC Berkeley conference

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MARCH 11, 2018

For most people, interaction with individuals that exhibit hoarding behaviors has been limited to the extreme cases shown on documentary television series such as TLC’s “Hoarding: Buried Alive” or A&E’s “Hoarders.” “Dr. Phil” and “The Oprah Winfrey Show,” series that are enjoyed for their melodrama, have also featured similar cases of hoarding behavior.

Beyond this popular culture sensationalism, however, is a new and emerging field of science surrounding this little-researched condition. One of the key players on the forefront of this previously untouched frontier is the Mental Health Association of San Francisco, or MHASF, which has been providing services in the Bay Area for 70 years.

“The mission of the (MHASF) is to cultivate peer leadership, build community and advance social justice in mental health,” said Rachel Del Rossi, the executive director of MHASF.

One of the association’s most revolutionary projects has been the creation of the International Conference on Compulsive Hoarding and Cluttering. The 18th annual conference will take place on the weekend of March 22-23, hosted for the first time at UC Berkeley’s very own ASUC Student Union.

According to Mark Salazar, the associate director of MHASF, the association’s work with hoarding behaviors began in the ‘90s and was started by individuals who attended a MHASF support group for residents of cramped urban housing such as single room occupancies, or SROs.

Since hoarding behaviors are interlinked with housing issues — especially the possibility of eviction when a landlord begins to have a problem with the behavior — hoarding was brought up within this support group. In 1997, this ongoing conversation lead to the creation of what was then called a “consortium,” which eventually became the conference that it is now.

“One of the goals of the conference is to educate … (and) give people hope so that they can they can make a change and so that they understand, ‘I’m not a slob, this is a medical condition and therefore I need to seek help’ ” — David Bain

This year, the conference will be taking on a completely different format than in previous years, offering a more interactive experience. Attendees will be split into groups on the first day of the conference and asked to brainstorm what they think are the major issues surrounding hoarding behaviors. The second day will then be dedicated to brainstorming solutions.

David Bain, co-coordinator and program specialist for the conference, discussed the aim of the conference.

“One of the goals of the conference is to educate … (and) give people hope so that they can they can make a change and so that they understand, ‘I’m not a slob, this is a medical condition and therefore I need to seek help,’ ” Bain said. “Researchers have expertise, but they don’t necessarily have the perspective of the people dealing with the disorder.”

That is the one of the most important aspects of the conference: its insistence on including those with lived experience, thus straying away from relying solely on what Del Rossi identified as “the more academic and clinical perspective.”

Salazar further elaborated on the anticipated outcomes of this new and relatively uncommon conference format, expressing hope that the conversation stimulated by bringing community members, researchers, mental health professionals and housing workers would create a “road map” that MHASF can then look to for possible initiatives and paths to further innovation.

“That peer group perspective is something we’re always trying to engage with, particularly with these co-learning opportunities,” Del Rossi said. “Having people with learned expertise in the room does significantly change the conversation.”

Stepping away from stigma

Given the lack of research and awareness that has defined popular culture’s understanding of hoarding behaviors, the conference is an indicator of future advancements in research and social understanding for those who have personal experiences with the disorder.

Until 2013, hoarding behaviors were considered a symptom of obsessive-compulsive disorder. However, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders now lists the official diagnosis for people who exhibit these behaviors as “hoarding disorder.”

The importance of language and how it can affect the public’s understanding of this condition has been one of the association’s focuses in its efforts to advocate for people who exhibit hoarding behaviors.

“One thing you don’t want to do is use the word ‘hoarder,’ ” Bain explained. “ ‘Hoarder’ is a label and is stigmatized. Hoarding (on the other hand) is a behavior that can be modified and changed.”

Even the term “hoarding disorder” is not widely accepted aside from within professional and research circles; it is, according to Del Rossi, found “extremely stigmatizing” to many people. Bain added that those who actually exhibit these behaviors do not necessarily agree on terminology, with preferred descriptors ranging from “collecting behavior” to “finders and keepers” and even “too much stuff.”

Making an impact in the Bay Area

San Francisco has definitely had its trials and tribulations when it comes to hoarding behaviors. Salazar brought up the importance of the San Francisco Task Force on Compulsive Hoarding, which was started in 2007. He later served as co-chair of the task force from 2013-15. In 2009, the task force released its first official report. It has since had an immense impact on city policies concerning hoarding.

According to the report, an estimated “12,000-25,000 adults in San Francisco have hoarding behaviors.” The reason for the wide estimate has to do with underreporting – more often than not, those who have this condition do not seek help because of the stigma surrounding their behavior.

Until recently, “cleanouts” were the most common type of intervention prescribed upon the discovery of hoarding in someone’s home. This intervention involves a professional, or multiple professionals, forcing the tenant out of their home without engagement and then ridding it of everything deemed “unnecessary” or simply “taking up space.”

However, cleanouts are now seen as ineffective.

“The attachments to these things — that’s what professionals forget,” Salazar said. “There are sentimental emotional attachments to the objects in their home. They can be very strong attachments.”

Bain commented on the brutal nature of cleanouts and their traumatic impact on those who are subjected to them. For some, they are comparable to assault. Overall, cleanouts that do not involve proper treatment of the individual fail to help address hoarding behaviors.

With all of these distinct populations being brought together, the innovative new conference format will hopefully lead to some alleviation of the societal stigma against hoarding behaviors.

Luckily, the task force report recommendations have been effectively implemented by San Francisco. Cleanouts used to cost the city more than $1 million a year, and they are now recognized as ineffective.

Instead, long-term case management is implemented if an individual is willing to cooperate with the city. While discussing the role of the city in cases of hoarding, Bain acknowledged that San Francisco works in a “supportive position” and the courts “bend over backwards trying to help the individual and avoid eviction.”

According to Salazar, the engaged support by the city was modeled after that of a similar task force in Boston. It was proven effective there, motivating the San Francisco task force to work closely with them to develop their own initiatives for helping residents with hoarding behaviors.

Del Rossi affirmed that San Francisco has had unique issues regarding hoarding, as these behaviors have been documented “in the aging LGBT population who lived through the AIDS crisis and have collected the belongings of their loved ones.”

Furthermore, hoarding behaviors have been a significant issue for service providers working towards eliminating homelessness in the city. After a history of not having enough, there is the opposite risk of accumulating too much after individuals are provided housing such as SROs.

However, the assumption that this condition only exists among low-income, marginalized populations is still far from the truth.

“There are doctors and lawyers who have hoarding disorder,” Del Rossi said. “How you present to the outside world doesn’t necessarily correlate to what is inside your home.”

In general, public perceptions of people with hoarding behaviors are incorrect. Words such as “lazy” and “dirty” are often attached to the stereotypes of this condition, and that simply isn’t the case.

“This is an ‘equal opportunity disorder.’ Income does not change it, education does not change it, sex does not change it, race does not change it,” Bain noted. “One of the things for (the general public) to know is we compare this to an addiction, just the substance is different.”

‘Thinking outside the boxes’ in Berkeley

By bringing this innovative conference focused on an emerging field to Berkeley, the association hopes to attract students and professors who are interested in pursuing research and joining a conversation that will further elucidate the nature of hoarding behaviors.

“One of the reasons we all thought Berkeley was such a good fit (for the conference) is that we are very much into social justice and mental health,” Del Rossi said. “Knowing the kind of reputation Berkeley has as progressive leaders and innovators themselves, I think Berkeley students would find this conference very interesting.”

Bain expressed a desire to make this conference more accessible to both undergraduate and graduate students. Those who devote about one hour of volunteer time sometime during the two days will be granted full access to the rest of the conference. Volunteer work will entail a task such as monitoring a room or directing attendees to the ASUC Student Union after they arrive at the Downtown Berkeley BART station.

With all of these distinct populations being brought together, the innovative new conference format will hopefully lead to some alleviation of the societal stigma against hoarding behaviors.

“It’s human to have a relationship with your belongings. That’s not necessarily a strange thing in and of itself,” Del Rossi said. “There’s a spectrum. It’s not binary. It’s not us and them — we’re all in there somewhere, but there are people who for them this has become an issue and impacts the way they live their lives.”

There will be a one-hour training for volunteers at the MHASF office at 870 Market St #928 on March 21. Interested students are encouraged to contact Bain at [email protected].


Contact Alex Jiménez at [email protected] and follow her on Twitter at @alexluceli.

MARCH 11, 2018