[NYAPRS Enews] HCO: Peer-Support Approach Challenges Long-Held Views Of 'Mental Illness'

[Harvey Rosenthal]

Inner Voices, Inner Strengths

Peer-Support Approach Challenges Long-Held Views Of Mental Illness

By Tracy Frisch  Contributing Writer  Hill Country Observer 

 

Brad Morrow had his first encounter with the mental health system when
he was in his late 30s. 
In the space of 15 minutes, a psychiatrist he'd never met before told
him he had bipolar disorder, gave him some prescriptions and told him to
come back in a month. 
The diagnosis, so quickly pronounced, became "like a death sentence,"
more shattering than the psychic pain for which he was seeking help,
Morrow recalled. He'd previously considered himself a "really creative
person," but the diagnosis changed that. Now he had a label -- and a
stigma.
"I felt like my life was a complete fraud, and everything I did and all
my accomplishments were based on an illness," Morrow said.
A major life change precipitated Morrow's initial difficulties. In
moving upstate from the New York City suburbs to give his daughter, then
in second grade, the kind of small town childhood that meant so much to
him, Morrow left behind his successful career as a chef. He'd owned a
restaurant that had absorbed his energy and imagination, and without the
identity that came from that, he found himself lost and depressed.
"I just hid inside myself, and I am a very social being," he recalled.
"It got to the point that I was drooling in my living room." 
The downward spiral slowly ended after five years, when Morrow emerged
from his self-imposed isolation to take a job for which a psychiatric
diagnosis was a primary qualification. He went to work for Voices of the
Heart, a local mental health organization that's based on the principle
of mutual support, rather than interventions and treatment by people
with professional credentials.
The job got Morrow out of the house and involved him in helping others
struggling with their own emotional turmoil. In this new environment, he
talked with other people who had gone through similar situations.
Hearing their stories and what helped them (and what didn't), he
regained his confidence and started to heal. He has since moved on to
another job in the mental-health field.

 

Planting seeds of change
Voices of the Heart, a nonprofit organization based just outside Glens
Falls in Queensbury, is in the vanguard of a growing peer support
movement for people in mental or emotional distress. The local group and
others like it, linked through the international Hearing Voices Network,
are challenging some longstanding assumptions about mental illness. 
Daniel Hazen, the local group's executive director, said the concept of
peer support grew out of the struggles of psychiatric patients for their
human rights.
"Consumers, survivors, ex-patients have been pushing for changes in the
traditional mental health model for over 30 years," Hazen said.
He got involved in the movement about 12 years ago and took his current
job in January 2010. 
This summer, Voices of the Heart hosted a three-day training session for
people from around the state interested in starting Hearing Voices
groups in their own areas. The training program, held at the Queensbury
Hotel in Glens Falls, was quickly booked to its capacity of 20
participants; those who signed up were among only 75 people in the
United States who'd received this type of training at that point.
The Hearing Voices movement originated in Europe and has spread as far
as South Africa, Malaysia and New Zealand. It is especially strong in
England, which has more than 160 chartered groups. 
But until recently, the approach had no momentum in the United States,
where the biochemical model of mental illness has maintained a strong
grip on the psychiatric establishment. Critics say that's partly because
of the large sums big pharmaceutical companies spend promoting their
products to doctors and psychiatrists. 
Gail Hornstein, a Mount Holyoke College psychology professor, has been
introducing the Hearing Voices approach to an American audience through
her book, "Agnes's Jacket," and an active lecture schedule. In an
interview, she called the "skepticism that people who have been labeled
'mentally ill' can get better ... one of the great tragedies of
psychiatry." 
Buoyed by the positive response to the idea that such peer support
groups can provide a path to recovery, Hornstein is spearheading Hearing
Voices training sessions in the United States. She led the Glens Falls
training program along with Hazen and Jacqui Dillon, a "voice hearer" at
the forefront of the British network.

 

Nonjudgmental forum
In October, Voices of the Heart started its first weekly Hearing Voices
group in Glens Falls.
"It's a place for people to come who have voices and visions and extreme
states," Hazen said. "The idea is simply for them to share and learn
from each other in a mutually supportive way."
Although working with voices may be considered a taboo subject in
conventional mental health settings, Voices of the Heart is respected in
the field. Some of its funding comes from the state Office of Mental
Health. This fall, the group held a collaborative training session for
15 mental health providers and 15 voice hearers on working with voices
one on one. The workshop was so well received that another one is in the
works for January. 
As in other peer support groups, participation is Hearing Voices groups
is voluntary. Participants decide for themselves whether the groups are
beneficial. Taking part in a group is compatible with other treatment
modalities, including medications.
Hearing Voices support groups differ from group therapy in many ways.
First, they are not a vehicle for psychologists, social workers,
psychiatrists or other professionals to bring therapy to patients with a
mental health diagnosis. Instead, the groups are non-hierarchical; one
or two facilitators, at least one being a voice hearer, convene each
group, but they are not leaders in the conventional sense.
Typically in psychiatry, hearing voices and other unusual perceptions
are condemned as signs of pathology. In Hearing Voices groups, however,
members explore one another's experiences with curiosity and openness.
Besides listening, they may offer suggestions and encouragement.
These groups also don't promote social norms or a particular worldview.
They provide a space for peer communication that is free of the usual
expectations of conformity often found in regular mental health
settings. No one polices whether one is taking one's meds or demands
that one make an effort to contribute to the group or show progress
toward some therapeutic goal.

 

Managing inner voices 
Melanie Adkins, a graduate student and home-schooling parent who used to
have her own business, traveled to Glens Falls from Watertown, nearly
four hours to the northwest, to take the three-day Hearing Voices
training. Her $500 workshop and lodging fee was paid by her area mental
health agency. In exchange, she is expected to start a Hearing Voices
group in the Watertown area. 
Adkins said she has lived her entire life hearing voices, but until five
or six years ago she was too afraid to tell anyone about them. 
"My husband just thought I was eccentric," she recalled. "I was 45 years
old when I finally came out and said, 'I hear voices.'" 
"I had some very aggressive voices," she added. 
As they had become more intrusive and destructive, even suicidal, she
said she couldn't keep them secret any longer. At the time, she was
already seeing a therapist to help her deal with issues from a horrific
childhood. 
With a supportive family and care that worked for her, Adkins said she
has been blessed. 
"I was sent to one of the best hospitals in the country - Sheppard Pratt
in Towson, Maryland," she said. "They used a lot of the same approaches
that Hearing Voices uses. ... They gave me the tools I needed to be able
to work with my voices, to accept them and be able to manage them."
Adkins said she still has many different voices, but now the majority
help her in positive ways. 
"I had to bring them up to date and not live in the past," she
explained. 
She keeps journals and has conversations with them. Sometimes she
negotiates. 
"A couple years ago I told two friends I had Dissociative Identity
Disorder," she said. "They were dumbfounded. They said, 'How do you hide
it?' I don't hide it. I was high-functioning enough to pass."
Adkins has had her share of troubles with the psychiatric establishment.

Her first psychiatrist, she said, overmedicated her. She would take her
husband with her as an advocate. But when he went overseas, her
disagreements with the psychiatrist escalated, and the psychiatrist
threatened to take away her driver's license. 
After one harrowing appointment, she checked herself into a hospital.
When her husband returned, they found another psychiatrist. 
"I think it's important to find a supportive therapist that works for
your whole wellness," Adkins said. "But you have to search for that."

 

Providing a different path
Zach, a Hearing Voices training participant who didn't want his last
name used because he feared the disclosure could jeopardize his new job,
said he welcomes "the possibility of providing another alternative
besides going to the doctor, the hospital or a therapist." 
Citing what he called a "glaring lack of choices in the mental health
system," he said one solution is these peer groups because they "are all
about empowerment, not pointing a finger."
Breanna Ayer-Senser, who also attended the training, said she has found
"wellness tools" - creative expression and exercise -- that enable her
to control depression and anxiety early. The 23-year-old writes poetry
and songs, dances and swims. She also has spiritual guide visions, which
she associates with her Native American and Jewish heritage. 
"I don't take medications because of bad experiences," she said.
She started doing clinical mental health work at 16. Since completing
college, she has been working at Voices of the Heart as a peer advocate.

"Voices of the Heart is helping me get the whole core of who I am," she
said. 
Associate director Theresa Doherty-Schwartz, who has been on the Voices
of the Heart staff since 2007, said she feels society needs to allow and
respect diversity in human beings, and not "cast a stone" at someone
"for living in their own reality," though it may be different from the
prevailing one.
Most people don't question that a janitor deserves the same human rights
as a physician, she said. 
"So does a person who hears voices that no one else hears or someone who
gets depressed or sees visions," Doherty-Schwartz added.
Instead, "we label them -- that they have a deficit -- and either offer
drugs or lock them up," she said. 
But psychiatric drugs aren't always what people want in their lives, she
said. 
"We are taking away people's rights to be individuals," she said.
"When I first joined Voices of the Heart, everyone would introduce
themselves to me by saying, 'Hi, I am bipolar' or 'I suffer from
depression' or 'I am schizophrenic,' and then follow with their actual
names," she said. 
Since then, she said, the culture has shifted away these stigmatizing
labels.

 

A haven at times of crisis
Voices of the Heart got started 13 years ago. The organization serves
Warren and Washington counties with multiple programs, all without any
out-of-pocket charge. Its trained peer advocates help people navigate
the courts and the mental health and social service systems. 
The organization also offer intentional peer support groups weekly in
different communities as well as one-on-one peer assistance, and it
gives people access to alternative stress reduction modalities such as
acupuncture, reiki, meditation and yoga. It even holds a monthly
drumming circle in a park.
In addition, Voices of the Heart runs one of the only nine peer respite
houses in the nation. The respite house, an apartment in Hudson Falls
staffed with peer advocates, gives people in crisis an emotionally and
physically safe place to get away from a stressful situation while they
figure out their options. Often, clients use this haven to avoid landing
in a psychiatric ward or jail, staying for a several days to a couple
weeks. 
Though it has only two bedrooms, the respite program can potentially
save taxpayers hundreds of thousands of dollars annually in Medicaid
costs. Hazen testified at a state hearing earlier this year that his
agency's respite house provides services for about $250 per person per
day, compared with more than $1,200 per day if a person were admitted to
a hospital mental health ward. 
For many people in crisis, the respite house is also a much better
option than hospitalization. Going to a hospital can be extremely
frightening for someone in need of comfort and reassurance, according to
Hearing Voices training participants who have themselves spent time
confined in psychiatric wards. 
At a hospital, the staff takes your clothes, gives you a hospital gown,
and may put you in a room until they can see you, hours later, because
they're so busy, participants said. Sometimes a hospital will post
security guards outside the room. 
"I've been waiting in that room with someone for eight hours," said
Morrow, who often accompanies people being admitted to hospitals in an
effort to lessen their distress.

 

Shunning drug therapies
Part of the attraction of programs like Voices of the Heart is patients'
distaste for the limitations and side effects of psychiatric drugs. 
When Morrow was in treatment, for example, he said his psychiatrist put
him on many different medications to find a regimen that would work for
him. 
"I'd go back every three weeks," he recalled. "He'd say, 'How are you
doing?' I would say, 'Terrible.'"
Psychotropic drugs come with a range of unpleasant and potentially
dangerous side effects. These drugs often numb the senses and dull the
emotions. They may also cause excessive salivation, dry mouth, weight
gain, organ damage, involuntary movements like shaking, tics and
shuffling, suicidal or violent thoughts, as well as various other
undesirable neurological, physiological and behavioral changes.
By suppressing extreme emotions, several participants in the Hearing
Voices training session said, psychiatric drugs can keep people stuck. 
"In my experience, people have to go through these emotions to get
through them," Morrow said. "It's harder for people who have been in the
system for awhile. Nobody has really listened to them or asked what
happened."
Morrow insists he is not opposed to psychiatry.
"There is not one way that works for everyone," he explained. "When I
look back to what they were doing in medicine and psychiatry a hundred
years ago, it was barbaric. I believe a hundred years from now, they'll
be saying the same about our current practices."
But like Hazen, he suggested that at a time of tight government budgets,
more of the mental health establishment will begin to embrace the peer
approach because of its cost-effectiveness.
Hazen was honored earlier this year with the Frances Olivero Advocacy
Award, given by the New York Association for Psychiatric Rehabilitation
Services. Hazen said he was stunned by the unanticipated recognition,
but he calls it as a "telltale sign that we're on the forefront of
changing the public perception about hearing voices and other extreme
states."
Hazen, a voice hearer himself, said the Hearing Voices approach has been
an inspiration to him. 
"A lot of the things I've experienced through this have saved -- and
changed -- my life," Hazen said. "It's been a powerful experience."
Similarly, Morrow recalled how the problems that originally brought him
into the mental health system ultimately helped him to grow and change.
"I thought they were just the worst things that could happen to me," he
recalled. "But now I am using my life experience to assist others who
are looking for a way out. The negatives have turned into positives."

 

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