Well Being

Striving for good health
in tribal communities

By John Donnelly
Photographs by Dominic Chavez

Foreword by Robert Redford

Well Being

Striving for Good Health in Tribal Communities
By John Donnelly
Photographs by Dominic Chavez
Foreword by Robert Redford
The Johns Hopkins Center for American Indian Health is honored to acknowledge and thank the
countless Native American peoples and tribes who have worked in partnership to develop health
programming. We are also thankful to the many funders and personal contributors who have made
it possible to do this work. We finally give thanks to all the people throughout the years who have
worked for the Center and have contributed their time, talent and resources to enhance the health
and well being so many.

Book design by Silvia López Chávez
Published in September 2010
Printed in the USA
Front cover photo: Jocelyn Billy-Upshaw sits on a wooden log with her four-month-old baby,
Mya Mae Upshaw, in Greer, Ariz. Billy-Upshaw helps weave Native American traditions into
the teachings for teen mothers in a program run by the Center for American Indian Health
at Johns Hopkins University.
Back cover photo: A vista south of Whiteriver, Ariz.

Well Being
Striving for good health
in tribal communities

By John Donnelly
Photographs by Dominic Chavez

Foreword by Robert Redford

TABLE OF CONTENTS
1

Foreword

41

‘This Is Who I Am’

by Robert Redford

An interview with Francene Larzelene-Hinton

4

A Relationship Built on Trust

44

Saving Teenagers, One by One

50

When the Stars Come Out

53

Reaching Fathers

Over three decades, Hopkins’ research evolved,
addressing new needs of Native Americans

16 A Tale of Determination

How one doctor helped Native Americans
– and the world

26

Finding a Balance

One family’s experience with traditional
and modern medicine

30

33

The Value of Endurance

A perspective from a leader at the
Indian Health Service

Cradling Our Future

Innovative suicide prevention program
documents great need for help
Native Vision program aims to inspire the young
Engaging men in raising their children

57 ‘I Have Learned So Much’

An interview with Dr. Jim Campbell

60 An Inner Drive

Setting high goals to promote health

62 Descendants of Warriors

Caring for young mothers – and their babies

39

A Timeline

67 Blessings of a Medicine Man

Historic milestones

An interview with Rochelle Lacapa
Blending spirituality and healing

FOREWORD
by Robert Redford

This book is a tapestry of stories –
vignettes of human lives knit together
by hope, respect and a vision for
restored well-being for Native
Americans. There is also a deeper
hope that flows beneath—a march
toward greater well-being for all
peoples—in the U.S. and worldwide.
As such, the stories in this book
are threads of a larger tapestry that
all who read it share through our
collective humanity and stewardship
of our earth.

Native Americans were, of course, the first and
best stewards of the North American continent,
living in harmony with “purple mountain
majesties” and “shining seas” long before
European colonists knew the Earth was round.
Before the arrival of the first colonists, the
traditions and lifestyles of Native Americans
honored Mother Earth and her bounty. Plants and
animals were sacred beings. Mindful hunting,
gathering and farming fed minds, bodies and
spirits. However, the European conquerers’
politics, religions and economies quickly
eroded the balance of life for Native Americans.
Imposed values of greed and gluttony resulted
in deep losses of indigenous cultures followed
by disharmony, and rampant health and social
problems for the First Americans.
As dominant society today begins to experience
the consequences of unsustainable exploitation
of the Earth, there is a quiet but rising awareness
of the urgency to help Native Americans restore
their traditional values, community health and
well-being as a necessary link to regaining
needed balance in the world’s ecosystems.
For some people, this urgency is intuitive. This
is the case for a man whose work I follow with
enormous hope and admiration – Dr. Mathuram
(“Mathu”) Santosham. More than three decades
ago, Mathu’s direct encounter with the health,
social and economic inequalities shouldered
by Native Americans paired with his inherent

1

TOP: Robert Redford. Courtesy of Kristina Loggia.

respect for all peoples—began his lifelong quest
to build a Center for American Indian Health
(Center) at Johns Hopkins School of Public
Health. True to the humility of Native peoples
and the diverse team of individuals who’ve been
drawn to Mathu and the mission of his Center,
this book avoids cataloguing the scientific
achievements realized by Native communities in
partnership with Johns Hopkins, in spite of the
fact that the work to date now saves millions of
lives a year worldwide. Nor does this book wax
romantic about Native histories and futures, but
instead follows a perennial course of sincerity
toward its “True north.”
In the end, this book presents portraits of diverse
people who strain every day against enormous
challenges and the monotony of naysayers to
set the world back in balance. Taken together,
this kalideoscope of lives reflect the light of a
common purpose — renewed well-being for all
peoples, including you and I and others who hold
this gentle book in our hands.
I am grateful to be a part of the production of
“Well Being” and hold great hope for the good
it will bring to you, I, Native Americans and our
world.

2

A Relationship
Built on Trust

Over three decades, Hopkins’ research evolved,
addressing new needs of Native Americans
BALTIMORE, Md. – On a hot, humid summer day in 1982, Raymond Reid was
walking in a parking lot outside Johns Hopkins University when a professor of
biostatistics called to him.
“Ray, I’m headed to your neck of the woods,’’
she told Reid, a Navajo tribal member who was
raised in northern New Mexico. She said she
was going to Whiteriver, Ariz., the site of a new
research project, and she was worried about the
heat. Reid told her not to worry – Whiteriver was
in the mountains and in fact, she would need a
coat for the cool evenings.
The two parted ways, but Reid couldn’t stop
thinking about the encounter. He was finishing
his residency in preventive medicine at Hopkins
and had been searching for projects with Native
American communities. He had found nothing,
until that moment.
Still, it seemed improbable anything would come
of this discovery, a project that was to study a
severe outbreak of diarrhea among children and

to look at new ways to prevent and treat it. The
project director, Dr. Bradley Sack, was out of the
country for the next several months and returning
to Hopkins for just one day. Sack’s schedule was
completely booked, and it appeared he already
had a team in place, led by site director Dr.
Mathuram Santosham.
But somehow Sack also had heard about Reid,
and soon sought him out to join the team with
Santosham. So there Reid was, a couple of
days before Thanksgiving that year, driving to
Whiteriver.
“It was cold, and snowy on the way down to
Whiteriver,’’ Reid remembered years later.
“I went through the town of Snowflake, and it
was snowing in Snowflake, snowing right into
Whiteriver. I went to the Whiteriver Hospital
LEFT: Dr. Raymond Reid, research associate at the Center for American Indian Health.

4

where they were doing the study, and I thought to
myself, ʻI would like it here.’ ”
Then someone took him to the pediatric ward.
“I opened the double doors into a wide hallway
and along both walls were cribs,’’ he said. “They
were all lined up like a train. In each one there
was a baby. I thought to myself, ʻWhat in the
world is going on?’ Each of the babies had
diarrhea. There was a diarrhea epidemic going
on. No one had told me this was happening.’’
As Reid let it sink in, a hospital worker said to
him, not unkindly, “Now, doctor, let’s get to
work.’’
Thirty years later, the work goes on.
It has grown, multiplied, veered in new and
unexpected directions on many reservations,
brought great joy, descended into great sorrow,
educated mothers to raise healthy children,
taught children how to live healthy lives, saved
countless lives in far-off lands, and saved them
here, too.

From the start, global impact
In the beginning, the relationship between Johns
Hopkins University and the White Mountain
Apache Tribe consisted solely of a research
project led on the ground by Drs. Santosham,
Reid, and a few others. They introduced oral
rehydration solution to treat diarrhea, which

5

revived nearly all the babies in the Whiteriver
cribs, and later babies in countries around the
world. Over the years, the work of what would
become the Center for American Indian Health at
Johns Hopkins – now comprised of more than 80
staff members, more than half of them Native –
blossomed across multiple reservations.
The work has tackled the prevention of lifethreatening infectious diseases, unraveling
entrenched behavioral health issues on
reservations, and teaching Native people from
dozens of tribes about public health strategies
through university courses.
The Center’s work has followed a simple set of
guiding principles: Treat everyone with respect,
and ensure that the community is fully on board
with any project. Its operations now include 11
field sites on the White Mountain Apache, San
Carlos Apache, and Navajo Nations, known by
its traditional name, “Diné Bikéyah;” ongoing
projects with tribes across the United States; and
three distinct program arms – infectious disease
control, behavorial and mental health promotion,
and training of Native peoples as researchers in
the field.
“Everything we did led to the next thing –
that’s the Center’s story,’’ said Allison Barlow,
Associate Director at the Center who directs
its growing array of behavioral health studies;
Barlow, who had recently completed a masters
degree in Aboriginal Studies at Melbourne
University, Australia, joined the organization
in 1991 as director of communications and

RIGHT: Allison Barlow, associate director of the Center for American Indian Health.

development. “We never had a script. What
we did have was the principle that we would
be responsive to the community’s needs and
desires.’’

“Their treatments and vaccines have really
helped us,’’ Lupe said. “Now children have the
opportunity to live to 100 years or beyond. What
they have achieved is unbelievable.”

But how did one thing lead to the next? How did
a Center at an elite Eastern medical institution
forge close bonds with Native people in the West
who were not immediately trustful of strangers?
What does the Hopkins experience teach other
universities and non-profit groups working in
low-income settings?

But who could have predicted this relationship
would last?

It has never been easy, for either the university
or the tribes. But tribal leaders say that what
made the projects work was that those from the
Center always kept their word, they stayed, and
they produced results that had great impact on
families and the community.

Skeptics at first
“When the Hopkins people came and said they
wanted to study Apaches, I was not sure,’’ said
Ronnie Lupe, the longtime Chairman of the
White Mountain Apache Tribe. “We have a
history of people using us as guinea pigs. But I
could not overlook the fact that so many of our
children were dying from preventable diseases.
So we finally committed to trying out an
arrangement with them. We watched them very
closely.’’
The Apaches liked what they saw.

“What’s remarkable has been this challenge
of merging two very different philosophies
and cultures,’’ said Dr. Katherine O’Brien,
Associate Director at the Center who oversees
all infectious disease work; O’Brien, born and
raised in Canada, had trained at Johns Hopkins
and worked for the Centers for Disease Control
before joining the Center. “Both sides had to find
their way. We had a number of strong leaders
who shared the same vision in the field. We did
it together. We found common guiding principles
on why we do what we do.’’
Arriving at those principles took inspired
leadership. It has come from the Center’s
founder, Santosham, a medical doctor and
researcher born in India who had a deep
understanding and sensitivity to the need to
build trust on the reservation. The leadership has
been shared by Reid, another understated and
soft-spoken doctor who also believes in doing
things the correct way and not rushing in order
to build trust. The leadership also has come from
Barlow and O’Brien, peers who use different
management styles (Barlow is more emotive,
O’Brien more exacting), but share a genuine
passion and drive to make life better, much
better, in Native communities.
Dr. Katherine O’Brien, associate director of the Center for American Indian Health.

8

And most important to the foundation of the
Center’s principles is that the leadership, too, has
come from many in the ranks of the organization,
from Native people who understand best how
things work on reservations and from Hopkins
researchers who brought experience from around
the world on how scientific research can prevent
modern-day disease and deaths. All showed the
way ahead.

teach parents proper use of ORT, which dropped
rates of diarrheal deaths among the participating
tribes (Apache and, later, Navajo) virtually to
zero. The findings became a major contributor
to World Health Organization guidelines promo
ORT to treat diarrhea in children worldwide.
After a long set of studies and trials to fight
diarrheal disease which came a completely new
challenge for the researchers.

Yet, before the first project began, diarrheal
diseases were killing American Indian infants
at rates seven times the national average. In the
late 1970s, no one knew the way ahead – not in
Whiteriver, and not anywhere else, either.

In the late 1980s, they began testing a vaccine
against Haemophilus influenzae type b, known
as Hib, a bacterium that was a dreaded disease
in the United States. It was the leading cause
of meningitis, which killed many babies and
crippled survivors. For many pediatricians
in the United States, it was the disease they
feared the most. Hib vaccine, now a routine
part of immunizations for infants, has virtually
eliminated the disease in Navajo and Apache
communities, contributing to the widespread
inclusion of the vaccine in programs around the
world.

A summer of child burials
Looking back at that time, the Rev. Alchesay
A. Guenther, the pastor at the Lutheran Apache
Mission in Whiteriver, grimaced and cast his
eyes downward.
“I buried over 20 babies one summer,’’ said
Guenther, now 86. “We made coffins at the
carpentry shop and we buried them. Then
Hopkins started its project. The next summer,
I buried two.’’
Santosham, Reid and many others had
introduced oral rehydration therapy (ORT) – a
simple electrolyte solution now commonly
known as Pedialyte – that prevented deaths and
hospitalization from dehydration. They trained
Native outreach workers to make home visits to

9

It was after this high-profile trial, which led
to requests to work with other tribes, that
Santosham founded the Center at Johns Hopkins,
formalizing a growing relationship that had
begun a decade before. The formation of the
Center in 1991 also helped him and his small
staff organize a growing roster of projects – as
well as to deepen the pool of wide-ranging
experts at the university who could work on
studies. And it ultimately opened the university
to Native students interested in taking high-level
courses on public health.

In the late 1990s, the Center ran a trial for a
vaccine against Streptococcus pneumoniae, a
leading cause of pneumonia, meningitis, and
blood stream infections in children; by this
time, O’Brien had joined the Center, and took
primary responsibility for this trial and the
infectious disease control program overall. Her
work at CDC, especially in epidemiological
investigations in Haiti, where she led teams
with members from diverse backgrounds, had
prepared her well for work with American Indian
communities.
O’Brien and the Center’s researchers learned
the vaccine protected the group most likely to
be infected with those pneumococcal strains
– babies and young children – and that in turn
helped stop the spread to everyone. The trial’s
end result: Routine vaccination has virtually
eliminated the strains of pneumococcal disease
in the vaccine across all ages in Native American
participating communities.
After the pneumococcal vaccine trial, the Center
turned its attention to tackling other causes of
serious respiratory disease in infants and children
in the communities. The infectious disease
team looked at using influenza vaccine among
pregnant mothers to lower the risk that their
newborn infants, who cannot receive flu vaccine
until they are older, would get seriously ill with
flu. The approach was startlingly successful
and could influence vaccine guidelines here and
around the world.

Every year at least one of every 10 infants in
the Whiteriver community is admitted to the
hospital with pneumonia or wheezing from a
virus called Respiratory Syncytial Virus, or
RSV. The virus is a significant contributor to an
estimated 1.7 million annual pneumonia deaths
among children around the world, and rates of
RSV disease among Navajo and Apache infants
are three times the US average. The infectious
disease team – following the Center’s principle
of responding to major health issues in Native
American communities – started a large-scale
clinical trial on preventing RSV hospitalizations
among these vulnerable infants. The preliminary
results have shown the vast majority of these
hospitalizations can be prevented. The full study
was nearing completion in 2010.

The ‘heroes’ of the trials
For Reid, the work brought many rewards.
“What has been the most meaningful to me are
words expressed by community individuals,
mainly mothers, when they say, ʻI had an older
child who had pneumonia and meningitis, and
the child died. Now we have a pneumoccocal
vaccine, and all of our younger kids have been
healthy.’ They give that expression of gratitude,’’
he said.
Reid said he thanks them, but then adds his
perspective. “I tell them, ʻIt’s not me. We could
never have had these studies done to find out
what worked against those diseases, if it wasn’t
for these babies who took part in all the research

10

we’ve been doing, and if it wasn’t for all the
parents of babies who allowed the research to
take part. These people, especially the babies, are
the heroes.’ ”
While these trials went on, the Center began
expanding in new directions – spurred by
requests from the White Mountain Apache
Tribe to begin work on some of the critical
societal issues haunting those on the reservation:
substance abuse, an upswing in teenage
parenting, and especially a rise in teen suicides.
Hedy Kelewood, then the head of the Apache
Health Authority, met with Center representatives
and in a series of meetings talked about starting
programs for young parents, substance abuse
prevention, and healthy lifestyle promotion.
In 1993, in a Center advisory board meeting in
Wisconsin, Kelewood made a particularly strong
plea. At the meeting, each participant shared
their biggest concern on their reservation. When
Kelewood began,“She burst into tears,’’ said
Barlow, who was at the meeting and had been
involved in the talks about starting new types
of health interventions in the community. “She
said that she didn’t know what to do – that the
Tribe had 11 suicides over six months. She was
imploring us to help do something.’’
In response, the Center brought together a group
of Hopkins experts from across the schools of
medicine, public health and humanities to meet
with Apache leaders. Kelewood asked several to
come to the White Mountain Apache community
to investigate the problem. Dr. John Walkup, a

11

leader at Johns Hopkins Division of Child and
Adolescent Psychiatry, became a prime ally in
the work, and with Barlow and Reid conducted a
series of interviews with teens, teachers, parents,
and elders. Walkup, Barlow, Reid and others also
conducted extensive reviews of those who had
died by suicide in order to learn about triggers
and risk factors.

Losing cultural identity
“Through the interviews, we learned that the
children felt invisible within the community,’’
Barlow said. “They were losing their positive
link to their cultural heritage and to the oncestrong Apache extended family and clan
networks. We also were told by elders that
outside media influences were very dangerous,
and supplanting traditional Apache identity.’’
The reviews of records of suicides also indicated
children at risk were dropping out of school;
engaging early in alcohol, drugs, and other high
risk behaviors; and were frequently seen in the
Emergency Department for injuries or mental
health problems. In the meantime, they had little
contact with available mental health services.
The interviews and reviews of records helped
set a new direction of work that focused on
prevention of problems through promoting the
natural strengths of Apache youth. “We don’t
want to work downstream – after the problems
happen,’’ Barlow said. “We want to find ways to
develop families and communities in a way that

will protect the majority of children and families
into the future.’’
The Center began developing curriculum for
young mothers and fathers to develop strong
parenting skills as early as possible in childrearing. They trained Native lay workers to
do home-based outreach to promote family
strengthening, child care, problem solving, and
coping skills. The Center also started a program
called Native Vision, in partnership with the
National Football League Players Association, to
promote fitness, healthy lifestyles, and cultural
pride through an annual summer camp and yearround afterschool programs. Tens of thousands of
children and families have been served through
these programs.
Over time, the Center found that local Native
outreach workers were key to filling gaps in
behavioral and mental health services on the
reservation.
“We’re committed to the paraprofessional
model of providing care,’’ Barlow said.
“Native outreach workers know the needs of
their communities better than anyone, and
deliver more than health services. They deliver
commitment to the future of their people and are
visible role models to the youth and families they
serve.”

The gifts from afar
During this entire period, the Center received
a range of grants from donors, including
foundation, corporate, federal, and individuals.
Several of private philanthropists also began
giving generously – notably three women.
One, Frances Velay, who was a native of
France and had worked as a historian for a
pharmaceutical company and had a history
of giving to programs benefiting Native
American communities. Ms. Velay, gave tens
of thousands of dollars annually to the Center
to support training and employment for Native
staff working in reservation communities. A
second, Thistle McKee Bennett, a pediatrician
and one of the first women to graduate from
Cornell Medical School, went out West with
Center researchers, fell in love with the projects,
and gave funding to support training and
outreach programs on the Navajo and Apache
communities.
The third was Ruth Thompson, a Smith College
graduate who lived alone in an old hunting cabin
with high ceilings in Greenwich, Conn. She had
been giving $20,000 to $30,000 a year, and when
she died she left a $10 million endowment to
the Center to fund a graduate training program
for Native Americans at Hopkins. Thompson’s
bequest gave birth to a Hopkins scholarship
program in which Native people enter Masters
and Doctoral programs. So far, 12 have entered
the programs, and six have graduated. The goal
of the program is to increase the number of
Native health professionals and scientists who

12

return to serve their communities. The Center
also hopes some will become future faculty and
program directors. In addition, since 2001, nearly
200 Native scholars have received graduate
training in public health science and practice at
Hopkins, many of whom were supported by the
Thompson scholarship endowment.
The Center also instituted career planning
with Native lay health workers so that they
could pursue professional training while they
maintained employment. More than 300 Native
lay workers have been trained and employed by
the Center.
But the numbers tell just part of the story.
O’Brien said that American Indian staff members
and those with advanced degrees from the
program have been able to experience the impact
of their work beyond their communities by
attending and presenting their major findings at
international meetings of scientists.
At one gathering in Alice Springs, Australia,
O’Brien watched one of the graduates,
Rochelle Lacapa, also a former Center staff
member, deliver an oral presentation before
1,000 international scientists on the results of
the pneumococcal study involving the White
Mountain Apache. Lacapa is an Apache.
“That was a really proud moment for her, and it
was a really proud moment for me personally and
for the Center,’’ O’Brien said. “I don’t think you
can find anywhere in the world another group of

13

indigenous people who have made such
a commitment to research and embraced new
knowledge as the White Mountain Apache and
Navajo have. These communities are true global
leaders.’’
Still, O’Brien said the Center has much work
yet to do in helping develop a new generation of
Native researchers. She said she hopes they can
become the principal investigators on studies
and the leaders of the Center. “We would love to
work ourselves out of a job,’’ she said.

For the future, a look at the past
Given the Center’s past, its future is likely to
unfold organically, nurtured by community
will and desire. Santosham said the Center will
always follow its guiding philosophy, and those
beliefs include supporting leaders in the Native
communities who want to restore traditional
ways.
“If we could only get young people to go back
to Apache ways, the ways of 100 years ago,
then diabetes would not exist,’’ Santosham told
a gathering in the fall of 2009 in Whiteriver
to celebrate the Center’s 30 years of working
with tribes.“You belong to a very proud Tribe.
You have a tradition of honor, of activities, and
particularly health activities. There are things you
can do today that would set an example for the
rest of the world.’’
Santosham’s message was directed at members
of the community, but the Center hasn’t been

sitting by idly. As a matter of principle, it often
incorporates cultural perspectives into its work.
On the day before the speech in Whiteriver,
Jocelyn Billy-Upshaw, holding her four-monthold baby, Mya Mae, briefly walked outside from
a Center retreat for some sunshine.
For the Center, she was weaving traditional
teachings into its program for teen mothers
promoting healthy child care and parenting
practices. Billy-Upshaw said she loved passing
on ancient knowledge, such as the celebration of
a child’s first steps.
“The young child has authority before coming
into the world, in the womb,’’ she said. “That
first step is the declaration of that authority.’’
She said she appreciated the Center’s decisions
to build Native traditions into its work, and that
teaching it to a younger generation was a gift to
them.
“It’s important to have traditional stories,’’
she said. “It gives you grounds for who you are,
and it sustains life for future generations.”

“We never had a script.
What we did have was the
principle that we would
be responsive to the
community’s needs and
desires.’’
– Allison Barlow

TOP: A vista south of Whiteriver, Ariz.

14

A tale of determination
How one doctor helped Native Americans – and the world

WHITERIVER, Ariz. – The two men sat facing each other on simple wooden
chairs. One already had a long successful career behind him. The other was 26
years old, and had not yet begun his, perhaps doubting whether he ever would; he
had not finished high school. The elder looked at his hands, took stock of the young
man, and then summoned the ghosts of his past.
“I’ve got big dreams for you,ˮ Dr. Mathuram
Santosham told him. “You can’t stop here. You’re
a smart kid. I’ve known you since you were a
baby.ˮ
The young man nodded. He had heard the stories
from his mother, how this doctor helped save
him when he was not yet a year old, when he had
horrible diarrhea, diarrhea that was draining the
life from his body. He had heard how the doctor
gave him a solution of salt and sugar, as he had
given to hundreds of others on the reservation,
and how that had worked. And he had heard
about how his mother felt so thankful that she
asked the doctor if he and his wife would be his
godparents.
“This is between you and me,’’ the doctor
told him. “You’re my godson. I want to see
you do well. The only thing that will stop

you is yourself. Guys who tell you, ʻLet’s go
get a drink,’ ignore them. They only care for
themselves. They don’t care for you. You need
to take care of yourself. You guys are the future.
And if you don’t live up to your potential, all I
have done here will be gone.’’
All I have done here. The words hung in
the trailer office belonging to the Center for
American Indian Health at Johns Hopkins
University; this was the headquarters for its
work out of Whiteriver, Ariz., the hub of the
White Mountain Apache Tribe. Santosham was a
revered leader on the reservation. His work had
not only improved the health of those here, but
also the health of children around the world.
And here he was laying it on the line with the
young man in front of him. Santosham was
talking about measuring the impact of his work
LEFT: Dr. Mathuram Santosham, founder and director of the Center for American Indian Health.

16

through the younger generation of the Apache,
and through this one person. This was between
the two of them.
If you don’t live up to your potential. And what if
the young man didn’t? What did that mean? So
much had been accomplished. But so much more
had to be done. The elder’s ghosts were in the
room. They were repeating lessons once told him
– a young man could succeed if he put his mind
and will to it. And if he didn’t?
Gone. In a corner of the room, the young man’s
mother watched the doctor and her son, quietly
weeping.
“Believe in yourself,’’ Santosham said to his
godson.
Mathuram Santosham was born in South India
in 1944, the third and last child to Flora and
John Wilfred Santosham, delivered by his
grandmother. He was a child at a time of great
promise for India. In three years, the twocentury-long British rule of India would end, and
John Wilfred was poised to reap the benefits. He
and Flora, along with many Indian Christians,
had received a good education during the time of
British control, thanks largely to schools run by
British missionaries. John Wilfred had obtained
a Master’s degree, and two years after the British
left, he had secured a prestigious job with the
Indian Foreign Service.
When the youngest Santosham, known as Mathu
(pronounced MA-too), was five years old, John

17

Wilfred received his first diplomatic assignment
to Nepal. It wasn’t a glamorous posting. In fact,
the couple wasn’t certain whether to accept. The
journey to Kathmandu was dangerous – a week’s
hike from the India-Nepal border – so the couple
prayed before deciding to go. They made the
journey without incident, and once there, John
Wilfred shone in the job, helping lead to many
more foreign assignments.
For the youngest in the family, it would be a
stable three years in Nepal, and unbeknownst to
any of them, it would also be the last time the
family would live together. His father’s next
assignments, the French colony of Pondicherry
in South India and Bonn, Germany didn’t have
good local schooling options in English that they
could afford; Santosham first lived with relatives
and later in a boarding school through the end
of high school. From age 12 to 18, he and his
older brother attended school in Scotland; for
the younger Santosham, the beginnings of his
education were extraordinarily difficult – he was
far behind classmates because he had started
school late and had not caught up.
Several months after he arrived in Scotland,
Santosham took a national exam that determined
whether he would be allowed to get at least 12
grades of education, or whether he would stop at
grade eight. It didn’t go well. His teacher, Mrs.
Grant, told him that the headmaster wanted to see
him about the exam. She accompanied him to the
office.

‘You could be an auto mechanic’
The headmaster told him that he had done very
poorly in the exams – at the bottom of the worst
students in Glasgow. It meant, the headmaster
said, that his formal schooling would likely stop
soon.
“You could become a carpenter or an auto
mechanic,ˮ the headmaster told the boy. “What
do you want to be?ˮ
“I want to be a doctor,ˮ the young Santosham
told him.
The headmaster and teacher exchanged glances.
Mrs. Grant’s face fell. The headmaster asked
Santosham to return to class. In his absence, his
teacher, he would later learn, argued forcibly
that the boy be allowed a second chance.
When she returned to class, she had regained
her composure, and afterward she told him,
“Mathuram, there is still hope.” A few days later,
he heard that the headmaster and Mrs. Grant
had appealed on his behalf to the School Board
to allow him to repeat a year and take the test
again after that. The School Board, his teacher
told him, had accepted the appeal. He would get
another chance.
In the months after Mrs. Grant’s victory on his
behalf, she worked with him during his lunch
hour and after school, encouraging him to push
ahead and keep focused on his dreams; it helped
Santosham in the national test earn a mark that
qualified him for high school. He had learned a

major lesson on the importance of a mentor, and
the value of helping out one person.

Lessons from his parents
During this time, Mrs. Grant wasn’t alone in
giving him strength. Santosham also drew
inspiration from his mother, who wrote him a
couple of times a week first from Germany and
later from Ceylon, now Sri Lanka. She told her
boys she was always praying for them, that she
missed them dearly, and that she hoped they were
going to church.
“I always felt my parents’ presence,ˮ Santosham
recalled decades later, driving in northern
Arizona, on Apache land. “Her letters meant so
much to me.ˮ
And over the next several years, through his
visits with his parents during the summers or
school breaks, it wasn’t just her words that
sustained him. He also watched how they acted
– especially with others. Because of his father’s
position, they had workers who cooked meals
and cleaned for them, and his household always
numbered more than immediate family.
“To my mother, they were family,’’ he said on the
drive on the reservation. “She always said that
you have to treat everyone as an equal. That was
basically Jesus Christ’s philosophy, which was to
treat everyone equally no matter their religion or
background. My mother would always tell me,
ʻWhat’s the point of faith if you don’t put it to
use?’ˮ

18

By the time he had reached 18, Santosham’s
foundation in life was set. He had experienced
the importance of someone believing in him.
He was committed to live as a true Christian.
He trusted God. And he trusted, too, he would
become a doctor. He was determined, and he was
grateful.
In 1970, at age 26, Santosham earned his medical
degree in India; during medical school, he had
met and fallen in love with a younger classmate,
Patricia James, whose studies would eventually
lead her to become an anesthesiologist. After
graduation, Santosham applied for an internship
at the Church Home and Hospital in Baltimore,
which had advertised that it was a “stone’s throw
away from Johns Hopkins.ˮ The implied Johns
Hopkins connection appealed to him, and he
moved to Baltimore for the job. One year later,
he returned to India to marry James just before
her graduation, and by early 1972, they were in
Baltimore, eager to start their new lives together.
Pat Santosham began her residency at Johns
Hopkins. For Mathu, the internship at Church
Home was frustrating; the hospital seemed
much farther away than the one block that
separated it from Johns Hopkins. He wanted to
be a pediatrician, and someone put him in touch
with Dr. Harold Harrison, a doctor-researcher
at Baltimore City Hospital. Harrison was an
international expert on diarrheal diseases, and
for years had used a ground-breaking sodium
and glucose solution to treat children with
severe diarrhea. Eventually, the World Health
Organization recommended its use. But by the

19

TOP: Oliver and Phoebe Nez, left and center, show family photographs to Santosham. BOTTOM: Francene Larzelere-Hinton (left), kisses her daughter, Jeona, 5, as Dr. Mathuram Santosham (right),
hugs Larzelere-Hinton’s son, Juanito, 2, at the Alchesay Beginnings Child Development Center in White River, Ariz.

late 1970s, most countries had not adopted the
recommendations for the mixture called oral
rehydration therapy (ORT). Many practitioners
were avoiding it because they believed it
contained too much sodium.

he positioned the suitcases into the truck’s open
bed, and started on the four-hour drive to the
reservation. He had never before driven a stickshift vehicle, and even his two-and-a-half yearold daughter sensed something amiss.

For the Santoshams, the end of the decade
established the frame of their lives. They started
a family (a boy, Vasanth, was born in 1976, and
Shireen, a girl, was born in 1978) and their career
paths. In 1979, Santosham decided to take a job
in Calcutta for a research project on diarrhea
conducted by Johns Hopkins. But the IndoPakistan war broke out soon after, and all USbased projects in India were asked to close down.

“All four of us were crammed together in
the front seat, and it was getting dark,’’ Pat
remembered. “It was gloomy and it started
snowing, and the suitcases were getting wet.
Everything looked stark and gray. I remember
thinking, ʻWhat am I doing here?’ˮ

From India to an Indian reservation
Santosham had to scramble for work, but he
received a break. While he was working with
Harrison, he met Bradley Sack, a well-known
scientist and teacher at the university who was
working on diarrheal diseases. Sack was starting
a five-year study on diarrheal diseases research
on the White Mountain Apache reservation in
Arizona. He asked Santosham if he would get
it going – at least for its first year. Santosham
accepted and moved there alone at the end of
1980. Pat, in India with their two young children,
flew to Baltimore (where she picked up three
suitcases) and then to Phoenix. Three decades
later, she still remembered the day she arrived,
March 1, 1981.
Santosham was waiting for her with a
government-issued, Chrysler beige pickup truck;

Santosham tried to cheer her up, pointing out
things along the way. “Look at the horses over
there, running free,’’ he said.
They finally arrived at their prefabricated house,
a trailer sitting on bare earth. Inside, the house
was empty. And, they immediately realized, it
had no heat. A neighbor came over with a heater
and blankets, and they cuddled that first night,
cold, under blankets.
It would turn worse. In a few days, Shireen
came down with pneumonia. She turned
seriously ill, and Pat, for the second time in a
few days wondered why they had come. Shireen,
recovered within a week. Furniture, beds, and
curtains, all ordered out of a Sears catalogue,
began arriving. And they began adapting to their
new life, little by little.
For Santosham, managing the clinical trial on
oral rehydration therapy was a huge job. He
needed to persuade everyone from tribal leaders
to mothers that the work was vital to saving lives

20

of children. At the time, the Apache reservation
was suffering through an epidemic of severe
diarrheal disease.

‘So many deaths’
“So many kids were dying of diarrhea,’’
Santosham said.“Those first few months, I saw
so many deaths.ˮ
Pat said the situation was extraordinarily difficult
for families. “The first summer we were there,
I wept with those families, seeing those little
beautiful Apache babies dead and buried,ˮ she
said.

21

Santosham worked in the Whiteriver hospital and
helped train Native outreach workers to include
oral rehydration solution (ORS) when they
found children with severe diarrhea. Gradually,
the practice spread from the hospitals to the
communities, and the rate of diarrheal deaths in
the Apaches who received ORT, dropped to near
zero. The Santoshams stayed past that first year
–– and ended up living in Arizona for nearly six
years, until 1986. The first two years were on the
reservation, while the remainder was just north
of the reservation, in Lakeside, in order for Pat
to be closer to her work as an anesthesiologist at
a hospital there. The studies to prevent diarrheal
deaths expanded to a series of trials, which
included use of different antibiotics, different
quantities of sodium and glucose in the ORT
mixture, and an examination of whether to feed
children after they receive the oral rehydration
mixture.

The last issue – feeding children – became
critical. Santosham and his researchers knew
that children in poor countries often had diarrhea
six to eight times in a year. At the time, doctors
and other health workers told mothers not to
feed their babies or children anything during the
diarrhea bouts. It meant, the Hopkins researchers
calculated, that these children ended up not
eating 15 to 25 percent of their early years. So
they started experimenting with feeding children
four hours after taking the ORT and found it
brought children back to health earlier. The group
published their findings on both the optimal
ORT mixture and the importance of feeding
children after taking ORT. Those findings greatly
influenced the WHO recommendations, and
became policy in poor countries around the
world. The Apache, through the trials, had made
medical history.

Changing health practices
globally
This would become the Center’s pattern:
addressing a life-threatening infectious disease
problem among Native children, introducing
a promising treatment or vaccine to try to stop
it, testing the approach in a clinical trial, and
publishing results that would change global
practice. Each intervention was fraught with
difficulties, but still, as surely as Santosham’s
belief in himself, each would advance, saving
lives again and again.

After the ORS and vaccine trials for drugs
that prevented meningitis and pneumonia, the
Apache and Navajo tribes thanked Santosham
for the work, but also asked him to look beyond
infectious diseases. They asked him about
other pressing problems – the need for mental
health services, the high rate of suicides, the
large numbers of teen mothers, to name a few.
Santosham went back to Johns Hopkins, and,
with the support of the leadership in the School
of Public Health, formed the Center for American
Indian Health in 1991.
Establishing a Center allowed Santosham to
expand the work and draw in other experts at
Johns Hopkins. It also allowed for the expansion
into training Native scholars in public health
professions; hundreds, on scholarship, have
enrolled in courses at the School of Public
Health. For the new work in behavioral issues,
the Center stuck to core principles: Win the
trust and support from the communities through
developing a strong partnership; get out into the
communities with teams of American Indian
workers; address issues that are relevant and
high priority for the community; and develop
rigorous ways of measuring whether new
interventions succeeded or failed.
No longer was the Center only rooted in
Santosham’s specialty – infectious disease
research. The staff grew to include specialists in
many fields. But the Center remained rooted in
his philosophy. He told everyone they must treat
all communities and all people, no matter their
social or economic status, as equals and with

respect. John Wilfred and Flora’s teachings were
alive and well.

An emotional evening
On the evening of Oct. 13, 2009, Santosham
gathered the Center’s staff at an inn in Greer,
Ariz., about a 75-minute drive from Whiteriver.
All that day, nearly 60 members of the Center
staff had met to discuss future directions – from
infectious diseases, to behavioral interventions,
to higher-education training for American
Indians. The discussions had gone well. New
ideas were aired and debated.
Though, that night in Greer, carried much
meaning for Santosham and his staff. The next
morning, the Center’s staff they were expected
to join hundreds of Apache tribal members for
a ceremonial walk and gathering to celebrate
Santosham’s 30 years of work on Indian
reservations.
Santosham had spent the past day in Whiteriver,
meeting old friend after old friend, and he was
looking back at three decades of his life.
“Today has been full of very emotional
experiences,“ he told the group. “The memories
just choked me up. I was talking with people
I had not interacted with for 20 or 30 years in
some cases.’’
One of those, he said, was his godson. “It
brought home the fact of what we’re not yet

22

done working with and for this community. My
godson dropped out of school in ninth grade. I
felt really badly hearing this. I felt I had dropped
the ball. But he and I are going to work together.ˮ
“I asked him if he would finish his high school
degree and he told me, ʻI will try.’ I told him
there was no such thing as trying. I told him the
story of the movie Star Wars and Yoda. Do you
remember what Yoda said when someone said he
would try?’’
Santosham looked around the room.
“Yoda said, ‘Do or do not. There is no try.’’’
Some laughed, some were quiet. “What I see on
the reservation is many people saying ʻOh, I will
try,’ not ʻI am going to do this.’ Once you decide
to do something, you must do it,’’ he said.
He told the group about being in a boarding
school in Scotland. “I had no parents there,’’ he
said. “I had nothing. But I had a teacher who
believed in me, and because of her I finished
high school. My godson needs someone like
that.’’
Someone like Mrs. Grant. Someone like himself,
or someone in the audience.
“If only we can provide hope for these kids,”
Santosham said. “There is this sense of
hopelessness with so many of them. The thing
is, we all have this responsibility, whether it be
in the inner city of Baltimore, or on the Apache
reservation.ˮ

23

TOP: Celebrating the 30th anniversary of the Center for American Indian Health in Whiteriver, Ariz. BOTTOM: Dr. Santosham was welcomed by Queenie Nashio during the celebration.

Fly like an eagle
Santosham ended with a story about a Native
runner – Billy Mills, a member of the Lakota
(Sioux) tribe, who ran on the US Olympics
team in 1964 in the 10-kilometer race. Mills,
considered a middle-of-the-pack runner, passed
through the 5-kilometer stage and remembered
something his father had told to him years earlier
before he died. “You must fly like an eagle,ˮ his
father said.
Mills took the lead, and then lost it a few laps
from the finish. Going into the final 100 meters,
Mills, in third place, with knees pumping high
and arms lunging in stride, surged to win.
“That’s what we need to do, to inspire these
kids,ˮ Santosham said. “We’ve done great things,
tremendous things. We can do more. Pick that
kid. Make a deal with that kid. Stay with that kid
until he flies like an eagle.ˮ
Santosham, at age 66, stays incredibly busy. His
work now has become more diverse than it was
as a young doctor on the reservation. He gives
speeches and attends conferences around the
world, and he is spending more time in India
trying to persuade the government to improve
health interventions for children.

in their community, but also around the United
States. They need support – financial, moral,
academic support. I want to be a mentor to these
people. I want to inspire them.’’
And that includes his godson. After their
meeting, Santosham called several times before
reaching him. He talked again to his godson
about the importance of going back to school,
and his godson agreed that he would do so – not
just try to do it, but to do it.
That was important to Santosham. “I will do
everything I can for him,’’ he said.

“My biggest ambition
is to build capacity
among the young
American Indians.”
– Dr. Mathuram Santosham

He has had success. But on the reservation, his
touchstone, he feels he has much more to do.
“My biggest ambition is to build capacity among
the young American Indians,’’ he said. “I want to
see the next generation become leaders not only

24

Finding a balance

One family’s experience with traditional and modern medicine
In the spring of 1989, Beverly Gorman had just given birth to her third child.
A field worker from the Center for American Indian Health at Johns Hopkins
University asked her and her husband, Emerson, if they would be willing to
enroll their newborn in a trial for a vaccine against Hib disease. The disease was
causing abnormally high cases of meningitis and pneumonia among babies in the
community.
Gorman’s husband Emerson, wasn’t so sure.
He is a Medicine Man, and had always relied
on traditional ceremonies and herbs to protect
his children and others from diseases. Beverly
Gorman, though, believed that the Hopkins’
trial not only could help protect their newborn,
Perry Lee, but also potentially many, many other
children if the vaccine proved effective.
On the fifth visit from the Hopkins’ outreach
worker, the Gormans decided to enroll their
son. The trial wasn’t easy. It involved four
vaccinations and drawing blood seven times over
the first two years of the boy’s life. Perry Lee, his
mother said, still remembers it to this day. “Perry
says, ‘They told me they were only putting a
butterfly on my hand, but I saw my blood come
out,’” Beverly Gorman said.

The experience was a positive one, and the
Gormans, a family that deeply respects both
traditional and Western medicine, became an
integral part of Hopkins’ work on in Native
communities over the next two decades.
Bev, as everyone calls her, was hired as a
research assistant, helping enroll other families
in trials, as well as her own family members.
“I wanted the parents and the community to
understand how Johns Hopkins’ vaccine trials
helped all of our children’s health – whether
on my home visits, or presentations, or during
chapter meetings where we can communicate to
our elder and traditional families,’’ she said.

LEFT: Beverly Gorman, who has worked for 15 years in the Center for American Indian Health’s infectious disease programs, and who enrolled five of her children in vaccine trials.

26

Enrolling one, two, three … six

Finding a balance

The Gorman’s next four children, Nathanial,
Phavion, YakaiYastai, Naiyahnikai, along with
two of their grandchildren, Nizhoni and Kahlil,
also became enrolled in several Hopkins trials
including Hib vaccine, pneumococcal vaccine,
rotavirus, and respiratory syncital virus (RSV)
among others.

Emerson Gorman, 58, grew to respect this
protection as well. Sitting in a restaurant one
night in the winter of 2010 with their eldest
daughter, YakaiYastai Nanabah – a traditional
Navajo name that means Morning Star-Waiting
For the Morning Dawn-Return from War – he
said he has grown to understand that traditional
medicine didn’t have all the answers to treating
diseases, and that childhood immunizations in
particular could save lives.

“When I put my child on the program, I saw
other moms concerned about their children. You
could see in the hospital and the community,
children who were sick from these illnesses and
diseases,” said Beverly Gorman, 51. “You want
these little ones to be healthy and you try to do
all you can to protect them. That’s what we are
doing.”
Many parents had questions about whether to
enroll their children.
“I’ve had reluctant parents,” she said, “They
want to know why this is being done on a
reservation, to Native people, whether we are
using them as a guinea pig. I tell them, if you
go to a hospital with a sick child and tell the
doctor what is wrong, the doctor will prescribe
a medicine. You take it because you trust the
person. In this case, we are giving you all the
information, how to prevent a disease, and it is
up to you to decide. It’s hard to be a mom and
dad, for you to decide what is best for your child.
The trials were one way where they didn’t have
to wonder about coming down with this illness.”

27

“The traditional side can only do so much, and
the Western side can only do so much,” he said.
“Sometimes there has to be a connection and
balance so that the person can really heal.”
In the Gorman family, this balance has been
passed from the parents to their children.

“I always wished I could have helped my
children more because there are diseases that
can be prevented,” she said. “That is what we’ve
been doing on the reservation for many years—
stopping diseases before they ever happen.”
Beverly says, “I am very happy and grateful my
children are born healthy and staying healthy,
and living their traditional values.”

“You want these little ones to be healthy
and you try to do all you can to protect
them. That’s what we are doing.”
– Beverly Gorman

YakaiYastai, 18, is an example. Starting from
the age of nine, her father noticed that she also
possessed the gift of being a traditional Healer.
She said she is trying to learn all she can from
her father. And while that continues, she also
plans to enroll in college in the fall of 2010,
where she hopes to start pre-med courses. She
wants to be a pediatrician.
For Beverly Gorman, her 15 years working for
Hopkins hold deep meaning for her, and it all
springs from trying to protect the very young,
from her eight children to all children in Native
communities.

28

THE VALUE OF ENDURANCE
A perspective from a leader at the Indian Health Service

ROCKVILLE, Md. – Dr. Phillip Smith, a Navajo Indian, remembers when he first
learned of Johns Hopkins University public health researchers’ work in Native American
communities. He was a family medicine physician in Tuba City, Ariz., and had a busy
practice of tending to the well-being of several thousand patients.

The researchers came to him with a request.
They wanted his help and blessing to start a
clinical trial for a possible Hib vaccine – which,
if it worked, would protect children under five
from Haemophilus influenzae type b, a bacterial
infection that causes meningitis and pneumonia.
Smith wasn’t so sure. He worried about potential
risk to those enrolled in the study, but he also was
intrigued because Hib disease was causing an
abnormally high number of deaths among Native
American children.
He first had questions. “We did not know what
the vaccines would do. And why did they
pick us?’’ said Smith, who is now Director of
Planning, Evaluation and Research for the Indian
Health Service. The IHS is a federal agency
with 17,000 workers responsible for health on
reservations.

The Johns Hopkins researchers explained that
they wanted to start on the reservations because
of the high incidence of the disease. That
persuaded Smith, and it became the start of a
relationship that has continued for nearly three
decades.
The researchers not only proved themselves at
that moment, Smith said, but they continued to
live up their word in subsequent studies and field
work, which was done in close collaboration with
tribal leaders and with the Indian Health Service.

Through ‘thick and thin’
“For me, the principal reason why I think the
Center for American Indian Health at Johns
Hopkins has been a success is one word: trust,’’

LEFT: Dr. Phillip Smith, Director of Planning, Evaluation and Research for the Indian Health Service.

30

he said. “The people were trustworthy. And how
they became trustworthy is that they stayed. They
stayed around through the thick and the thin of
things.’’
Smith said that from the perspective of Native
Americans living in tribal communities, “If you
know someone is from Johns Hopkins, you know
they are going to be there. They are going to be
there when times are bad and times are good.’’
For Smith, 61, whose career in Native American
health spans both hands-on field work and
experience around senior policy circles in
Washington, D.C., one of the most endearing
moments in the long partnership with Johns
Hopkins were the early days when the doctors
also lent a hand.
He worked alongside several Hopkins doctors,
including Mathuram Santosham and Ray Reid, in
children’s wards and emergency rooms.
“These physician-researchers used their expertise
in rolling up their sleeves in helping out in
clinics,’’ Smith said. “That endeared them to
people. They showed their interest was genuine.’’

31

RIGHT: Vista outside of Tuba City, Ariz.

“The people were
trustworthy. And
how they became
trustworthy is they
stayed. They stayed
around through the
thick and the thin of
things.’’
– Dr. Phillip Smith

CRADLING OUR FUTURE
Caring for young mothers – and their babies

CRYSTAL, N.M. – At first, the young woman didn’t want anything to do with
Brandii Cowboy, a family health educator at John Hopkins Center for American
Indian Health. She wouldn’t even answer the door.
But gradually, over a period of months, Shannon
Johnson began to look forward to Cowboy’s
visits – and her lessons on being a good mother.
Cowboy taught her a variety of approaches for
raising her children, and when the young mother
started seeing improvements in her relationship
with her young girl, she started feeling much
happier.

33

Family Spirit program visits and lessons improve
the lives of both mother and child, resulting in
long-term benefits to the children.
The program, which has evolved since 1998,
and is now in a final National Institutes of
Health evaluation trial ending in 2010, has been
operating out of the Center’s offices in three
Arizona reservations, including Cowboy’s base
in Fort Defiance (Navajo); Tuba City (Navajo);
and the San Carlos Apache and White Mountain
Apache reservations.

“I changed a lot,’’ said Johnson, 21, sitting in
Cowboy’s car outside her house on a winter
afternoon – nearly three years after Cowboy’s
first visit. ``I changed my attitude, and I changed
the way I raised my kids. I probably learned
more than 100 things.’’

‘A great prevention strategy’

Johnson has been one of 322 young mothers
enrolled in Johns Hopkins’ Cradling Our Future
study, testing a curriculum called “Family
Spirit,” which involves frequent home visits and
detailed lessons on child care and parenting for
Native American young mothers. The purpose
of the study is simple: to measure whether the

“We are banking on the premise that positive
parenting in early childhood is a great prevention
strategy for later problems – helping prevent
alcohol abuse, drug abuse, depression and
anxiety, even suicide prevention,’’ said Allison
Barlow, associate director of the Center for
American Indian Health. “We are working as far

RIGHT: Brandii Cowboy, a family health educator at the Center for American Indian Health.

as possible upstream, by intervening with the
youngest expectant mothers, to help them change
the trajectory of their lives, their children’s lives,
their children’s children’s lives. The goal is to
break the cycle of inter-generational behavior
challenges and despair.’’
Barlow said the local Native family health
educators, “are the fuel for this effort. We give
them tools, training and employment—and they
become the change agents in their communities
to renew positive family life as the root of
indigenous strength and well-being.’’
In a pilot study preceding the Cradling Our
Future study that also included home-based
education for mothers, Johns Hopkins’
researchers found that enrolled mothers knew
far more about raising children than mothers
who received no lessons, and exhibited
more involvement and more positive mental
health. The pilot project also found that local
paraprofessionals – basically, trained Native
community members – had a great capacity
to engage and educate local teen mothers. In
other words, a dearth of American Indian health
professionals did not appear to hinder such a
study.
The expanded study has focused on Native teen
mothers, ages 12 to 19, because they are arguably
one of the most vulnerable and forgotten groups
in a society that already suffers high rates of drug
abuse and poor health and behavioral outcomes.

35

Before launching the study, Johns Hopkins
researchers examined and drew lessons more

than 40 other home-visiting programs in the
last three decades around the world that also
had targeted young, high-risk mothers. These
programs led to improved parenting and home
environment; increased support for mothers from
other family members; increased birth spacing;
improved health of children; prevention of child
abuse and neglect; and a decrease in mothers’
drug use.

Using only Native workers
For the “Cradling Our Future” study, the Center
tailored its work to the realities on the Navajo
and Apache reservations. Some examples:
a Native Advisory Board made adjustments
to lesson plans that were based on American
Academy of Pediatrics’ guidelines to reflect
traditional values; the Center used only Native
workers for its home visits because outsiders
wouldn’t be as welcomed as home visitors;
and unlike other studies that relied on nurses
making the home visits, the Center used
paraprofessionals due to the shortage of Native
nurses.
One of them has been Cowboy, 37, a plainspeaking, single mother of two who knew well
the difficulties facing these young mothers.
Cowboy had worked continuously at the Center
since 1997 on a variety of studies, including
vaccines to fight rotavirus and pneumococcal
diseases. But the study on teen mothers hit
home for her. She is the mother of Wyatt, 13,
and Taylor, 10; she had Wyatt when she was
23. When he was born, she had often felt at loss
about what to do with him in various situations.

“Because I am a single parent, I can see and
understand their struggles,’’ she said. “We have
a lot of hardships put upon us, especially these
young moms.’’

mother’s home to complete a detailed series of
questions to measure the mother’s parenting
skills, her attitudes, and the child’s health and
development.

Operating out of the Center’s Fort Defiance
office, near the New Mexico border, Cowboy’s
clients are spread far and wide – sometimes more
than a 90-minute drive away.

One of those evaluators has been Tanya Jones,
who also works out of the Fort Defiance office.
Jones, like the other independent evaluators, does
not know whether the mother is receiving the
lessons or not. Sitting in a room at the Center’s
trailer with binders for each teen mother,
numbering 1001 to 1096, Jones said she regularly
sees the wide range of challenges facing the
mothers.

“We deal with a lot on this job – sometimes
driving an hour but the mom isn’t home,”
Cowboy said. “We get flat tires. We get lost.
We deal with dogs. We are greeted with angry
relatives.’’

After the bad comes the good
But then there are breakthroughs with the
mothers, such as the one with Johnson, and that
makes all the difference.
“What’s good about this is that it’s one-on-one,’’
Cowboy said. “We are teaching them so much
– basic infant care, parenting skills, everything
from things early in pregnancy to the child’s third
birthday.’’
The family health educators have visited weekly
or monthly, depending on how old the child is;
they have also been available to transit mothers,
who have limited transportation, to important
appointments – or even to just get them out of
the house. Every six months, independent health
evaluators, who are also from the communities
and employed by the Center, have gone to the

“They are always moving around,’’ she said.
“Sometimes they live with their grandmother,
sometimes with their mother, and some are
living on their own, trying to get their GED or
going back to school. Many want a sense of
independence.’’
Most problems, she said, revolved around
poverty.

‘Love and nurturing is there’
Despite these hardships, the majority of the
mothers have told her they were happy being a
mother – often a nine or ten on a 1-to-10 scale,
with 10 being very happy. “The way they interact
with the child shows they really love him or her,’’
Jones said. “They know how to love them even
though they don’t have all the advantages or money
in the world. That love and nurturing is there.”

36

give them honey or sweets, or junk food,’’ she
said. “I even told a friend of mine who had a oneyear-old who was fussy and crying all the time,
that she should stop giving him fried bread with
powdered sugar. She didn’t know that.’’
Beyond that, Johnson, who has three young girls
and gave birth to the first at age 15, said she
learned not to spoil her children.
But she also has seen desperate situations. “Some
mothers are just zoned out, and you can tell the
child is not getting enough attention from the
mom,’’ Jones said. “The child is more fussy,
and the mom is exhausted and tired – her hair is
not done, or she has just gotten out of bed and
doesn’t want to do anything. She is depressed.’’
Cowboy said most of her teen mothers are very
engaged – and led happy lives. As she drove to
Johnson’s house, along roads with eight-foothigh snowbanks from a near-record storm in
January 2010, Cowboy said that the process of
teaching the mothers takes time to work well.
“It’s hard in the beginning for them to trust us,
to open up to us. Some, like Shannon, wouldn’t
even open up their doors to us,’’ she said. “But
now I go to a home and sit for an hour and they
will tell you everything. Some of us are invited
to baby showers, weddings, graduations. Even
the parents who were not open to us in the
beginning, now they are calling you to come to
help.’’
Johnson said she first learned some basics about
how to feed her daughter. “I learned I shouldn’t

37

ABOVE: Rholanda Moody and daughter Kaylee Moody.

No more sweet tooth
“Ever since I got in the program, I’ve put my
foot down,’’ she said. “I used to give them candy
in the morning. Now, I don’t do that anymore.
When my oldest complains, I give her a timeout
instead of laying a hand on them. It’s working
well – she doesn’t have tantrums much.’’
Johnson’s next goal will be to get her GED, or
high school equivalency, toward a career as a
nurse. She said Cowboy has helped transform her
life.
“I can tell her anything – things I can’t tell my
mother,’’ she said.
“I used to bug you all the time,’’ Cowboy said.
“Now I’m calling you,’’ Johnson said. “I’m
saying, ʻWhere are you? Why aren’t I hearing
from you more often?’ˮ
The two laughed.
“When this ends, I can still call you, right?’’
Johnson asked her.
“You better,’’ Cowboy said.
ABOVE: Cara Sanchez and son Aiden Ethelbah outside their home.

38

A Timeline: HISTORIC MILESTONES

Early 1990s: Launch of mental
health and substance abuse
prevention work with White
Mountain Apache.

Early 1980s: Prevention of
infant deaths from diarrhea by
introducing Oral Rehydration
Therapy (ORT).

Early 1980s

Early 1990s

Early 1990s: Elimination of Hib meningitis.

Mid 1990s

Mid 1990s: Rotavirus vaccine
trial.

1995: Launch of Share Our
Strength home outreach
program with first-time mothers
to promote breast-feeding and
nutrition.

1995

1996

1996: Launch of Native Vision
youth development program,
in partnership with NFL Players
Association and the Nick
Lowery Charitable Foundation.

1998: Launch of Family
Spirit, providing parenting
education in the homes of
teen parents.

1998

Late 1990s

Late 1990s: Attacking
pneumococcal disease burden
with PCV7 trial.

2001: Training American
Indian health professionals
and scholars.

2010: Fathers Launch

2004: Launch of Celebrating
Life program to prevent youth
suicide.

2001

2004

2004: Preventing RSV
disease.

2009

2010

2009: 30th year celebration.

‘This is who I am’

Q: What has been the impact of the studies?

An interview with Francene Larzelene-Hinton
Q: What kind of work have you done
at the Center?
A: I’ve worked on a lot of different things
– a training component of NARCH, then
a research component of it, among other
projects. I first started working on a project
involving the pneumococcal vaccine, which
is interesting because my oldest daughter
had passed away when she was almost three.
The autopsy showed she had died from
Streptococcus pneumoniae. For me it was full
circle with this particular disease – first the
experience with my daughter and then one of
my first projects at Hopkins.
Q: How did you feel about that?

Francene Larzelene-Hinton, 36, a White Mountain
Apache, mother of four, is the field director for the
White Mountain Apache-Johns Hopkins Native
American Research Center for Health (NARCH)
in Whiteriver, Ariz. Here are excerpts in an
interview in early 2010 about her work.

41

ABOVE: Francene Larzelene-Hinton, director of the Native American Research Center for Health.

A: I had a sense of peace because it gave
me a better understanding – I had to read
what pneumococcal was and how it affects
the body. It just gave me new knowledge
about what she had passed away from. You
are never OK with losing your child, but I
guess I was proud to work on that particular
research project because it was personal. It is
a preventable disease, and we have worked on
creating some interventions and awareness for
the community.

A: They have had a far-ranging impact.
Novalene (Goklish, field program coordinator
of the Center’s Celebrating Life and
Empowering Our Spirits programs, which
work on prevention of suicides) and I present
all of Hopkins’ projects here on the reservation
to the Health Advisory Board and the Tribal
Council. They will ask us how this will benefit
the community and other populations. We do
our best to tell them how it will benefit not
only our community, but communities around
the world.
The Advisory Board and Tribal Council are
foremost concerned about the communities
here. But whatever we can do to help save a
life, whether it be here or another place around
the world, they know that the purpose of our
research will be a benefit in some way to
someone.
Q: Could you describe your relationship
with the board and council?
A: There is trust with that relationship.
Novalene and I are Tribal members born and
raised here. These are our people, and we only
want what is in the best interests of our people.
We are honest with them. We know they are
entrusting us to inform them, because they
don’t work on research and we do.

Q: You are fully in two worlds, how do you
balance that? Or is it natural?
A: I think it is natural. I think it falls back to
how we were raised and the morals that we
were taught and how we view our culture and
history as well as the modern culture of the
United States. I was born and raised here, but I
was also raised off the reservation. For several
years in elementary and junior high school,
I lived in Boise, Idaho, with my mom who
was going to college at the time. I interacted
with a lot of different people, a lot of different
cultures, groups. I guess I try to look at
everything from all points of view. But I know
that I am White Mountain Apache. This is
where my home is. This is who I am, part of
me, and you are taught that you always know
where you come from and know who you are.
I know the struggles our people have with
everything, whether it be health, finances, or
something else in modern-day life. I also know
the projects I work on are very important and
they will benefit our people. Looking at the
traditional side of our life, we understand how
our elders and others who are very traditional
view things. Maybe because I participate
in traditional ceremonies, I have a better
understanding of that – that the ceremonies
that go on are sacred to our people, and that’s
something we have to preserve and also take
care of. I feel that both the traditional and
modern ways can mesh in a way that can work
for everybody.

42

Saving teenagers,
one by one

Innovative suicide prevention program documents
great need for help
WHITERIVER, Ariz. – The 14-year-old girl carefully drew red magic marker lines
on her arms – 20 on each one. These were the lines she would trace with a knife.
She was going to cut herself.
She confided this to a friend over her cell phone.
That sparked a chain of events: The friend called
the girl’s mother; the mother called her son, who
knocked on his sister’s bedroom door; and the
mother rushed home – and stopped her daughter
just as she had begun. Days later, after the girl
had been treated at the Indian Health Service
Hospital in Whiteriver, the mother started a
healing process by welcoming Novalene Goklish
into her home.
Goklish is a senior field program coordinator of
the Celebrating Life and Empowering Our Spirits
programs, which were established at the Center
for American Indian Health to track teen suicide
attempts and help prevent the loss of young lives
on the White Mountain Apache reservation. She
leads a team of five people who help connect
families and teenagers to counseling services and
other assistance that they need.

Soon after the 14-year-old’s cutting episode,
Goklish spent time with the girl and understood
immediately the seriousness of what had
happened.
“It was her intent to die,’’ she said.

Tribe calls for help
The Johns Hopkins program began after the
White Mountain Apache Tribe in January 2001
became the first population in the United States
to mandate community-wide reporting of suicide
completions, attempts and ideation. The reason
was obvious: American Indian communities were
suffering from the highest rates of youth suicide
in the country.

LEFT: Two friends hug at dusk in their neighborhood in Whiteriver, Ariz.

44

But no one had fully documented and understood
the depth of the crisis on the Apache reservation
until the White Mountain Apache Tribe in
partnership with Johns Hopkins began its suicide
surveillance program that looked at all forms
of self-injury. The program wasn’t just a data
collection exercise. Its key component was to
deploy trained American Indian paraprofessionals
to homes touched by suicide, either from deaths
by suicide, attempts, or ideations to make sure
they received help.
It became clear that the youth needed help
the most. Between 2001 and 2006, the Johns
Hopkins study found, 61 percent of Apache
suicides occurred among youth younger than 25
years. Those aged 15 to 24 years had the highest
annual rates: 128.5 per 100,000, or a staggering
13 times the U.S. all-races rate and six times the
American Indian and Alaska Native rate.
In addition, the study found that in 2005, 159 of
the 235 reported cases of attempted suicide, or
68 percent, were by those under the age of 25;
in 2006, 103 of the 160 attempted suicide cases,
or 64 percent, were under the age of 25. Females
were attempting to kill themselves with the same
frequency as males, but males attempts yielded
more death, by a five to one ratio. And nearly
nine in 10 deaths came from hanging.

45

just five-foot-five inches tall but her presence
in a room is unmistakable. At times, she exudes
a quiet confidence, surveying all in front of her
and making decisions on how to proceed. Other
times, inside the Whiteriver Hopkins’ two work
trailers, she goes on the offensive by relentlessly
teasing her peers. She seems ready to take on
anything, or anyone. For a program that is on the
frontlines of hurt and trauma on her reservation,
in her community, she draws upon the depths of
her inner strength to deal with situations that tear
families apart.
It wasn’t always this way. Her family, too, was
torn apart.
In 2002, her younger sister, then a high school
senior, died. The Bureau of Indian Affairs
classified it as a suicide, but other authorities
were not so sure. Tribal Police, for one, never
determined cause of death, and Goklish herself
doesn’t believe her sister died by suicide.
Still, regardless of cause, the death threw
her family into months and years of hurt and
confusion.

A leader for the work

“I still deal with it on a regular basis,’’ she said
one late fall day, seven years after it happened,
as she drove north out of Whiteriver. “I really
struggled a lot. I went through some depression.
I could not let it get control of me. I did a lot of
praying. I really focused on my kids. I think it
really pulled my family closer together.’’

The choice of Goklish, 37, as team leader in the
program was made with great care. She stands

She is a mother of three children. She is part
of an extended Apache family, an Alchesay, a
ABOVE: Novalene Goklish sits in the Whiteriver, Ariz., home of one of her clients in a suicide prevention program.

46

descendent of the White Mountain Apache chief
who during the Apache Wars with the US Army
had tried – and ultimately failed – to persuade
Geronimo to surrender. In her work, no one has
to tell her its importance.
“We touch lives every day,’’ she said. “Our staff
go out to houses every day, Monday through
Friday, sometimes on weekends. Every morning
they go out with smiles on their faces. They work
hard.’’

‘I let out my feelings’
Goklish pulled into the Hon-Dah Resort Casino
and Conference Center and walked into the gift
shop. Behind the cash register, Tammie Ivins, 35,
greeted her warmly. A decade earlier, as part of
a separate Hopkins program supporting young
mothers, Goklish had counseled Ivins, a high
school classmate, who became depressed after
giving birth.
“I had nobody to talk to, and Novalene came
and was really helpful,’’ Ivins said. “I let out my
feelings to her.’’
Twice a week, Goklish had stopped by Ivins’
home, to check on her. “You helped me more
than just listening,’’ Ivins said. “You also drove
me to doctor’s appointments or to run some
errands.’’

47

As she did with Ivins, she does now in families
with teenagers who have tried or talked about
committing suicide.

In one neighborhood on the reservation lined
with two-bedroom homes, tall pine trees and
small, neat front yards, Goklish walked into a
home to see the family of the 14-year-old who
had drawn the red-marker lines on her arms.
The teenage girl was outside; she saw Goklish,
waved, and ran off with her friends. Inside, the
girl’s mother sat in a recliner and began rattling
off the trouble and heartbreak in their lives.
Her daughter, she said, had been sexually abused
as a child and because of that had severe selfesteem problems and harbored deep anger and
anguish. In middle school, the mother said, her
daughter had “fallen into a clique of cutters.’’
This group, she said, had urged each on to
cut themselves to express their despair about
the future. One day, the mother discovered in
between her daughter’s mattress and box spring
a poem she had written called “The Shadows,’’
which ended:
“All I do is cut and cut
So I’m bleeding way more
Because you left me in
Your shadow I guess
So thanks to you
I’m too scared to live.’’

Exposing a nightmarish world
The mother said that Goklish had helped them by
connecting them to counselors and by spending
time with her daughter – sometimes in their
home, or in school, during breaks in classes.
“I had no clue at first that this was happening to

my daughter,’’ she said. “Everything was just so
foreign. I didn’t know how to grasp it. Novalene
was nice enough to explain it to me, to let me
know what was happening in the schools.’’
It is a nightmarish world in which young people
take any sharp object – knives, razor blades,
needles, even the innards of pencil sharpeners –
and inflict cuts on all parts of their bodies, from
the privacy of their bedrooms, or bathrooms, or
in the woods.
Over the next months, the mother would
periodically force her daughter to show her arms
and legs and between her toes to make sure she
wasn’t cutting herself. When her daughter wasn’t
home, the mother searched her room for any
sharp objects, and on several occasions found
them.
After awhile, the mother admitted to feeling
so depressed that she also had had thoughts of
suicide. She told Goklish about this, too. “So
Novalene would just sit and talk with me for long
periods,’’ she said.
The girl rushed back into the house, talked to
her mother for a moment, smiled at Goklish, and
then was off again.
Later, after a quiet ride from the house, Goklish
said that home visits often quiet her. But the
program’s mission, she said, helped her and other
outreach workers stay focused on the task. The
hope here is that the work will help pioneer other
community-based models to promote mental

health interventions and services in areas that
have never had such help before.
Still, this is hard work.
“You are not talking with the same person every
day, you are not always hearing the same story.
You could be talking to someone about an
attempt made by a 10 year old, or it could be by a
70 year old,’’ she said. “All have their own story.
You have to filter out these stories by the end of
the day.’’
Many stories, though, have positive endings.
“You know in many cases, there is hope for
them,’’ Goklish said. “Even though this is a huge
problem on the reservation, we know we are a
making a big difference in someone’s life. We
see that every day.’

ABOVE: Novalene Goklish stands next to a stream on the White Mountain Apache reservation.

48

When the Stars Come Out
Native Vision program aims to inspire the young

WASHINGTON, D.C. – The stars come every year now to a reservation – 70 to 80
professional or college football, basketball, soccer, volleyball, and lacrosse players.
They are strong, agile, elite athletes. Many are famous. And for three days each
summer, they help run the Native Vision program, teaching the values of healthy
minds and healthy bodies.
Clark Gaines, assistant executive director at the
NFL Players Association and one of the founders
of Native Vision, has witnessed how the players
serve as an inspiration for Native American kids
– helping them believe they can succeed and that
education is a key to attaining that success. The
program, run by the Center for American Indian
Health at Johns Hopkins University, started in
1996 with 90 American Indian kids; it has grown
into a year-round initiative that features a camp
for 700 to 800 kids.
At first, though, said Gaines, 57, a former
running back for the New York Jets, some
didn’t believe the stars could help. The skeptics
included some of the kids themselves.
“I remember one year Derek Kennard from the
Dallas Cowboys was speaking to the group and
in the middle of his speech, a kid shouted from
the audience, ‘Why are you here? Nobody cares

about us. Have you ever been to a reservation
before?’ ”
Gaines, on the sidelines, thought to himself,
“How does he respond to that?”

Born on an ‘asphalt reservation’
The player had an answer ready, Gaines
remembered. “He said, ‘You’re asking me if I
have ever been on a reservation? I was born on
an asphalt reservation. All the problems, all the
issues, that you have here exist in the ghetto.
Everybody looks at me like I’m from the wrong
side of the tracks. But I chose to break the
chain. I chose not to be a pimp or a gangster. If
I made that choice, you can make that choice. I
challenge you not to fail, because if I can do it,
any of you can do it.’”

LEFT: Clark Gaines, assistant executive director at the NFL Players Association.

50

The audience stood and cheered.
The roots of the program began from an idea
from Allison Barlow, associate director of the
Johns Hopkins Center for American Indian
Health, and Nick Lowery, a former placekicker
for the Kansas City Chiefs. Barlow and Lowery
were graduates of Dartmouth College, and both
were sports stars – Barlow an all-American
lacrosse player, Lowery a football kicker. On
a plane ride from Hawaii to Los Angeles, as
Gaines’ wife stood to walk in the aisle to console
their crying baby, Lowery slid into her seat.
Five hours later, Gaines and Lowery were still
excitedly talking about how they could build
a camp. The idea was transformed, and soon a
camp was born.
It soon became apparent that the camp’s purpose
wasn’t just to expose Native American kids to
sports heroes, or just to give them a few days
of exercise. It was to inspire them – and to push
forward a vision for the future.

‘They need hope and opportunity’
“You know, the first day at these camps, the
kids are standoffish,’’ said Gaines, who has been
involved in every Native Vision camp since it
started. “But after a day, they loosen up and they
begin to get excited. It’s amazing. They need
hope and opportunity. We can give them hope.
We bring in an athlete and he tells them a story of
how he got to where he is.’’

51

And what about opportunity? That, Gaines said,
is a long-term issue, involving, among other
things, jobs creation and more investment in
education.
At the Native Vision sessions, Gaines also tells
his own story to the kids – he grew up in the
Civil Rights era in Elberton, Ga., where he was
one of 13 African American students to volunteer
to integrate Elbert County High School before
enrolling in Wake Forest University and earning
his bachelor’s degree. He forged a new trail. He
had access. And that’s the spirit, the vision, he
wants to give to Native American kids.
“At the end of these camps, the kids really
get close to the athletes,’’ he said. “They are
hugging, talking about issues, exchanging email
addresses.”

“These guys – and myself
as well – want to leave
something behind. What we
run is a life skills camp.
All that you learn through
sports, you apply to life.’’
– Clark Gaines
ABOVE: Some of the participants at a Native Vision camp throw balls in the air. Photo courtesy of (need credit).

52

Reaching Fathers
Engaging men in raising their children

WHITERIVER, Ariz. – In the summer following his freshman year at Piedmont
Community College in Tucson, Kirk Massey Jr., then 19, could see a career ahead
in physical education. Then everything changed. His wife became pregnant.
Massey had a choice: Continue his studies in Tucson, or stay in Whiteriver, his
hometown, and devote himself to being a father.
He stayed home. “I decided that being a parent
was the best choice,’’ he said.
Massey, now 32, became a father to Michael,
who is 13 and approaching his dad’s 6-foot-3
height. Massey and his wife, Sheree, who both
work for Johns Hopkins’ Center for American
Indian Health, went on to have three other
children – Marcus, 6, Leah, 2, and Lindsey, born
Nov. 20, 2009.
On the White Mountain Apache reservation,
where single mothers are head of households in
an astonishing 39 percent of the homes (more
than two times the national average), Massey is
a role model for fathers. Now, he and the Center
are looking to take proactive steps to help men
make choices that will be good for them and their
children.

53

Kirk and Sheree Massey, both family health
educators at the Center, spent much of the winter
and spring in 2010 interviewing fathers about
their hopes, dreams, and challenges. They are
taking reams of notes to shape them into a pilot
program that the Center plans to launch in the
fall.

An earlier attempt with fathers
It wasn’t the first time that the Center has
become involved in a project for fathers on the
reservation. In 2004, a project called Family
Spirit put together a curriculum for mothers
and fathers on better parenting and life skills.
But many fathers dropped out for a variety of
reasons, including work that took them off the
reservation as well as a reluctance to do one-onone sessions.

RIGHT: Kirk Massey Jr., a family health educator at the Center for American Indian Health.

The need to get fathers more involved in their
families didn’t go away, of course, and, with
funding from First Things First, an Arizona
initiative to improve the lives of children, and
the National Institutes on Drug Abuse (NIDA),
Hopkins started a second initiative for fathers.
“The dads are kind of getting left out of the
picture,’’ said Ranelda Hastings, a family health
educator at the Center who was involved in its
first program for fathers. “They face a bunch of
challenges on the reservation, and this time we
needed to find out what kind of help they prefer.’’
In the interviews and focus groups totaling
100 members of the community, the Hopkins
researchers found a range of needs, as well as
new approaches to teach them parenting skills.
Out went the one-on-one lessons.
In came ideas from fathers to hold get-togethers
in groups, and to do things outdoors with their
children. Massey also came to appreciate that
many fathers on the reservation were already
playing vital positive roles with their children.

‘Many have it tough’
“Some fathers who we talked to have been really
involved,’’ Kirk Massey said.“Some didn’t have
a job, but they didn’t let that disappointment get
in the way of parenting. But others have great
needs. Many have it tough. A couple of these
fathers face challenges in the court system, for
instance, and they have to try to overcome that.’’
He added, “They all have a desire to do better, be

55

a better dad, husband, partner, to be successful.
But they keep running into barriers.’’
In between interviews with men across the
reservation, Massey also sought out tribal leaders
and groups that led outdoor activities. One
morning he met with Lonnie Shane Burnette, the
Tribe’s Director of Tourism.
Burnette told Massey about his hopes in
renovating an old base camp as an outdoor
recreation spot that could offer horseback riding,
camping, and fly fishing instruction, among other
things.
“It would be really great if we could have some
sort of partnership,’’ Massey said.
“It would be,’’ Burnette agreed. “We’ve pitched
the idea of using it as a green site. There’s no
place in Arizona like this one, where kids could
go, and you could teach them how to do things in
a traditional way.’’
The two men, roughly the same age, started
reminiscing about times when they were boys,
and how the camp would be a throwback to that
era.

One father’s gifts to his son
Massey believes he has had the good fortune to
be raised by a father, Kirk Massey Sr., who spent
time with him outdoors, gave him a foundation
of faith, and strongly pushed for him to have a
good education.
“He gave everything to us,’’ Massey said. “He
helped teach me what I want to do as a dad, to be
there emotionally, spiritually, and physically to
help my children.’’
His father isn’t his only teacher. The fathers he
interviewed for the project also have profoundly
affected him.
“It has changed me,’’ he said. “It’s made me go
back and look at my parenting, my fathering
style, and to continue to try to get better as a
father. At the end of the day, I sit and reflect on
what has happened, I count my blessings, go
home and hug all my children.’’

“No cell phone coverage,’’ Massey said.
“No choice but to pay attention,’’ Burnette said,
and the two men laughed.

TOP: Kirk Massey and his two sons Michael (left) and Marcus (front) at the East Fork Lutheran School in East Fork, Ariz.
BOTTOM: Students play during recess at the school.

56

‘I HAVE LEARNED SO MUCH’
An interview with
Dr. Jim Campbell
Dr. Campbell worked for
two decades as a doctor
with the Indian Health
Service (IHS) before
retiring in 2006. Since
then, he has worked
with the Johns Hopkins
Center for American
Indian Health as a staff
doctor on infectious
disease projects, as
well acting as a liaison
with the Indian Health
Service.

Q: Can you describe the beginning of your
work with Native American communities?
A: I came out here in 1978, and I had never
met a Native American in my life. To the
Anglo person, the Native American can
represent many things. Some people say,
they represent a national treasure. We assume
they are close to the land. We talk about them
from a spiritual point of view. If you met an
elderly Navajo where we are now (outside in
Greer, Ariz.), he would say we are sitting in a
church, that we are in unity with everything
around them – the trees, the water, the rocks,
everything.
Q: How have you, as an outsider,
established a relationship of trust with
people on reservations?
A: I’ve learned so much from them. Our
Western culture goes too fast. We tear
down sacred things, thinking we can build
something better. I’ve seen what they have to
offer not just in the tribes, but also to the wider
world. If you have lived out here a long time,
it’s because you have been touched by these
folks somehow.
Q: Why have the partnerships between the
tribes and Johns Hopkins lasted so long?

57

A: The challenge out here is to do your work
respectfully. Mathu is a deeply respectful
person. With the White Mountain Apache, you
RIGHT: Dr. Jim Campbell, staff doctor and IHS liaison at the Center for American Indian Health.

have to earn their trust first. A lot of people
come out here, and they are soon gone, or they
come looking for something or running away
from something.
How you prove you care is by staying the
course. Mathu sensed that. He abided by all
the rules. People here know they can trust
him. The IHS also didn’t see him as someone
coming to write another paper. He came out
because he saw there was a need to bring
equity in health to these people. You cannot
turn your back on a situation where children
are dying of meningitis on the reservation at
10 times greater rates than children outside the
reservations.
Q: What do you see as the bulk of work
ahead for Johns Hopkins?
A: For many years, it was all about the
infectious disease work. But if you really want
to continue to bring any fairness or equity of
health care to the tribes, you have to get into
different, difficult areas. Now what you see
is the assault on a culture, new morbidity.
You see the sadness of a culture being pulled
apart, with dysfunctional families, child abuse,
drugs, alcohol abuse. So now the behavioral
health work of the Center is going to be the
big thing – the work on suicide prevention,
teen mothers, and other issues. Obesity and
diabetes could do more harm to Navajos than
TB ever did.

An Inner Drive

Setting high goals to promote health
Sky Nez is a mountain of a man, a stand-out-in-a-crowd White Mountain Apache,
but his physical presence is of secondary importance. What is extraordinary about
him is something not so easily discerned – an inner drive that seeks out challenges
and propels him to surmount obstacles that would stop almost anyone else.
Signs appeared early. In 6th grade, he won a
school award for creative writing. At age 14,
sparked by his interest in music and radio, he
started working at the local radio station, and he
stuck with it until eventually he was reporting
and then broadcasting the news.
After graduating from Northern Arizona
University, he became editor of the Fort Apache
Scout Newspaper of the White Mountain Apache
Tribe – a run that now stretches nearly a decade.
And then came the decision to take a big chance,
and a big opportunity: He started classes in
Baltimore at Johns Hopkins University to earn
a public health training certificate in American
Indian Health.
On a morning in January 2004, he found himself
on campus in Baltimore sitting in his first class
in the Anna Baetjer Room; the room was named
after a petite wiry woman who enrolled at the
School of Public Health in 1920, a time when

Hopkins had only a few female researchers,
and who then stayed over six decades in a
groundbreaking career in which she became
known for her devotion to helping others.
That day in 2004, Nez began a process that
would continue for four years, ending with the
achievement of being the first Native American
to finish the certificate degree program at
Hopkins.

Excitement in Baltimore
But he was a bundle of nerves that morning,
if incredibly happy. He had decided to start the
classes for a variety of reasons. One was because
of his personal medical issues; he wanted to gain
a better appreciation of health in general in hopes
of helping himself. Another was that he had
harbored an interest in learning more about how
to incorporate public health into journalism, and
how that could better serve his tribe.
LEFT: Sky Nez, editor of the Fort Apache Scout Newspaper.

60

“I was really excited,’’ Nez said. “I just had so
much appreciation for being in that room.’’
In that first class, An Interdisciplinary Approach
to Understanding the Health of Native American,
and in the ones that followed, Nez shared the
classroom with Native Americans from a number
of tribes, as well as other Hopkins students
studying for graduate degrees in public health.
The tribal members shared a commonality of
being an American Indian, but each came from
distinct cultural backgrounds. His circle included
a Chippewa from Minnesota, a Sioux from
the Black Hills of South Dakota, a Mescalero
Apache from New Mexico, and a Navajo from
Arizona.
“It was a way to learn from other tribes,’’ he said.
“In my own thinking, we were one people, and it
was great to be with my brothers and sisters from
other parts of the country.’’

Plowing through courses
with purpose
He also learned from a series of lecturers –
some of the giants in the world of public health,
and some of them leaders in Native American
health. Each course led to another, one season
to the next, and Nez plowed through all,
including some courses that were more than a
little difficult. He appreciated them the most,
especially two: Introduction to Quantitative and
Qualitative Research Methods and Introduction
to Data Management.

61

RIGHT: Outside Tuba City, Ariz.

“I liked those two courses because they were the
most challenging,’’ he said. “It gave me a great
insight into what health researchers do, how they
collect information, and how they analyze it. You
also had to really use all your mathematical skills
– and that’s always a challenge.’’
The courses helped him better understand Johns
Hopkins’ mission on the reservations. And it also,
he said, “gave me much more insight in how to
help the health of our people.’’
The courses also opened new opportunities.
In November 2008, he presented information
on Johns Hopkins’American Indian Health
training program at the National Institutes
of Health. And in August 2009, following a
course at the Indigenous Health Institute at
Columbia University, Nez was chosen by his
peers to present a digital story on the health of
the homeless at the United Nations Permanent
Forum on Indigenous Issues.
He’s not done. He now wants to get his Masters
in Public Health. That will create a new series
of obstacles, but no one who knows him doubts
whether he can do it. They know his drive and
his purpose.
“If I can attain my masters in public health,’’
he said, sitting in his newspaper editor office
one day early in 2010, just after another long
night in putting the paper to bed, “I will use
that background and position to help others to
promote heath. In the end, I want others to be
healthy and happy. So that’s what I’ll set out to
do.’’

Descendant of warriors
An interview with Rochelle Lacapa

Rochelle Lacapa, a member of the White Mountain Apache Tribe but
also of Hopi and Tewa descent, earned her dual Bachelor’s Degree
in business and theology at the University of Notre Dame; became a
college retention specialist with the White Mountain Apache Tribe,
Division of Education Office of Higher Education in Whiteriver, Ariz.;
worked as the training coordinator for Johns Hopkins Native American
Research Centers for Health; and then became the first White Mountain
Apache to receive a Master’s Degree in Public Health from the Johns
Hopkins Bloomberg School of Public Health in June 2007. She spoke
in early 2010 in Lakeside, Ariz., where she is regional coordinator for
First Things First, a statewide organization that seeks to improve the
lives of children up to age five.

LEFT: Rochelle Lacapa, regional coordinator for First Things First.

64

Q: Why did you enroll in the Johns Hopkins
master’s program in public health?
A: After completing my undergrad I had
always thought I would go into corporate
America and thought the higher education job
with the Tribe was just a stopping-over point.
When the Johns Hopkins’ position became
available and I ended up taking it, I really
started to see there is a much bigger need in
terms of public health and started to get a
much wider view of what public health is and
how public health shapes everything we do in
every community. If all facets of our public
health system aren’t shored up, there are a lot
of negative consequences.
After two years of being at the Center,
Mathuram (Santosham, founding director
of the Center for American Indian Health)
encouraged me to apply to the School of
Public Health. I really loved and hated the
experience – hated it only because it was so
intense. The masters program in public health
at Johns Hopkins is 11 months and 80 credits
worth of classes. It was such an amazing
experience in terms of being able to learn from
other public health professionals throughout
the world as well as learning from some of the
best public health minds in the country. They
gave me a really broad perspective on what
public health is.

65

Q: What was challenging about it?

Q: How can you help?

A: It was sink or swim. While working on my
final research project, my desk was next to one
of the Center’s Infectious Disease researchers,
Gene (Eugene) Millar. I was constantly asking
him, `Gene, how do I … ? Gene, do you
know what this word is? Gene, how can I …?’
He’d have to sit down and draw pictures and
help explain things to me. But I think that’s
another element of being successful, and
that’s something students struggle with – just
being able to ask for help. We’ve been taught
from a very young age to not ask a lot of
questions because it can be seen as a sign of
disrespect. However, in academic settings, not
asking questions can often lead to a student’s
downfall.

A: I think I can be seen as a resource in terms
of knowing how to work the channels and
knowing how to get information. Secondly,
I can be seen as an example that you can go
across the country and come home. Is it easy?
No. But you can do it. I’m an example of a
girl who grew up in the White Mountains who
went away for undergraduate and graduate
school and came back – and is trying to make
a difference.

Q: How do more Native Americans follow
your path?
A: A level of fearlessness needs to be
reclaimed by the Apache people. Historically,
we have always said that we’re a proud and
fearless people and that we’re descendants
of warriors. Somewhere along the way
we’ve become very fearful of anything
and everything. I think in order to really be
successful and to really go after what you
want – whether it’s on the reservation or not –
there has to be that element of I’m giving 100
percent to this, whether I succeed or fail.

Q: Why did you come back?
A: A couple of reasons. My family is here,
and after living in the Midwest and on the East
Coast, I just realized that I wanted to live here.
I wanted to start a family and raise a family in
Arizona. But I also feel like I have a lot to give
in terms of helping my community in any way
that I can. Whether it’s being the go-between
in terms of talking about medical research, or
even being an example of an Apache girl who
went to college and came back.

“A level of fearlessness
needs to be reclaimed by
the Apache people.”
– Rochelle Lacapa

At the end of the day, no matter where I go
in the country or in the world, I will always
be White Mountain Apache. And so I guess I
will always have a sense that this is home and
these are my people, and whatever I need to
do, I will do it to help my people.

66

Blessings of a Medicine MaN
Blending spirituality and healing

TUBA CITY, Ariz. – When Thomas Hatathli was no more than six years old, he
was herding sheep one day and came across an abandoned hogan – a traditional
Navajo home. In the grass, he found an old horse’s bridle.
“I picked it up,’’ he remembered. “After walking
about a mile, I threw it away. A day or two
after, I was running in the early dawn with my
brothers. It was pitch dark. I saw a horse running
our way. As it was getting closer, I didn’t hear the
pounding of the horse hoofs. I panicked. I yelled.
I cried. I ran away from it. I don’t remember
much after that. I was brought before one of my
grandfathers and I told him what I did.”
“He scolded me, he was mad at me. He told
me it came from a man who lived there, who
died there. It was a taboo. The family took his
favorite horse and put a bullet through its head,
and killed the horse. That’s how they do it in the
old Traditional Navajo way. You kill a horse for a
journey into the spiritual world. My grandfather
said you messed with that spirit by picking up the
bridle, that’s why the horse came back to you.
“After that, my dad kept me close. He said I had

67

been touched by the spirit and he viewed it as a
symptom of becoming a future Healer.”
The young boy had no idea what was in store for
him, to become a Medicine Man.

Drawing upon ancient lessons
Now, 46 years later, he is that and more. On
weekends, he often performs traditional allnight spiritual ceremonies for others in his tribe,
drawing upon a storehouse of knowledge from
his father and grandfather, including 400 songs
that they taught over years of nights of singing.
And during his healing ceremonies, their words
pass through him, and he asks the person in need
to repeat those same prayers. “When I pray, it’s
like 1000 words of wisdom are flowing through
my mouth,’’ he said.

RIGHT: Thomas Hatathli mental health specialist with the Indian Health Service at Tuba City Hospital.

During the work week, he is a mental health
specialist with the Indian Health Service at the
Tuba City Hospital. And whenever possible
during the year, he works with the Johns Hopkins
Center for American Indian Health. For several
years, he has taught courses on Native American
spiritual ways and traditions at Johns Hopkins’
Baltimore campus. In Arizona, he has frequently
given advice to Hopkins leaders on a variety
of issues. He also has blessed the openings of
several projects. He had participated as a running
coach in the Center’s Native Vision camps.
“We value him so much,’’ said Kristen
Speakman, training manager for the Center. “We
look to him as someone who provides wisdom
for our work. He provides a balance. When his
hand is on a project, it puts us in a good way.’’

Bridging cultures
For Hatathli, 52, a competitive marathon
runner who coaches and runs alongside high
school athletes in Tuba City, the blending of the
traditional ways of the Navajo and the ways of
an established Eastern U.S. academic institution
have come fairly easily. He sees value in both
approaches on the reservation. He sees each
working toward the same goals – better health for
all Native Americans.
“I really appreciate that they are trying to
incorporate spirituality into their healing
system,’’ he said. “… I feel comfortable with
them.’’

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A scene south of Whiteriver, Ariz.

The soft-spoken Hatathli has helped the Johns
Hopkins researchers to connect to the Navajo
culture in ways they never could on their own.
This relationship, an informal one without titles
or set responsibilities, has built bridges for each.
“I come from a family of Medicine Men, and I
always feel we live in the companionship of our
childhood days,’’ he said. “For us, to be educated,
to go out from your own land into the outside
world, is not an easy accomplishment. Many
people need help. So I appreciate that Johns
Hopkins is here and reaching out to many people
who are in great need.’’

“We look to him
as someone who
provides wisdom
for our work.’’
– Thomas Hatathli

Johns Hopkins Bloomberg
School of Public Health
Center for American
Indian Health

621 N. Washington Street
Baltimore, Maryland 21205
P: (410) 955-6931
F: (410) 955-2020
www.jhsph.edu/caih