Bringing Back the Story: Wellbound Storytellers and Health Empowerment

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The Navajo Sugar Monster

Long ago the Holy People predicted that a monster would take over the Navajos.

Our mothers and fathers would change…No longer were man and woman together.

One after another this monster ate away their faces.

It gnawed away Navajo identity….Everything turned from light to dark….Words ceased to exist.

The Holy People begin to cry.

The Navajo language meets its end…Mouths would soon close entirely.

X marked the spot….Over the eyes and mouths of the people.

The Navajo were not human anymore.

They were beings who craved only one thing

It was not water or food…Nor prayer or traditions…Nor love or family.

The Holy People were right.

Sugar is our monster.

A killer claiming Navajo lives…With a craving that could never be satisfied

Who are these monsters?

Mom? Dad?  Where are the elders? Where is my family?  Who will save us?

It’s going to claim the next generation if things don’t change…

We must stand and make a change…Stand up and fight against this monster

For you…For your family,

Your mother, Your father, Your children

For your Nation.

by Chantelle Yazzie (A neo-traditional story published on Wellbound Storytellers.)

Stacy Braiuca is one of the Native Americans writing for Wellbound Storytellers.  “There are currently 11 ‘Wellbounders’ all over the country, all different Nations, ages, backgrounds.  We try to write about strengths and weaknesses in our journey.  Not only are we trying to be a group of leaders to start a movement of storytelling, but storytelling is a natural fit to health empowerment.”

Just a year old, The WellBound Storytellers “blog is specifically trying to use storytelling to empower people, ourselves and others, on our health journey.”  Indeed, storytelling is essential to the wellness of native people.  “We have always told stories to pass our values, lessons, and learning to the next generation,” Ms Braiuca relates.

Ms. Braiuca is a Clinical Social Worker and Public Health educator. She works full time as a Research Associate for thewpid-Photo-Mar-22-2012-941-PM Center for American Indian Community Health and Healthy Living Kansas at the University of Kansas Medical Center, working on research projects about cancer, obesity, and health literacy.  She is a member of the Citizen Potawatomi Nation (hence CPN).   According to the CPN website, “The CPN are Algonquian-speaking people who originally occupied the Great Lakes Region of the United States.  Originally the Potawatomi were part of the Three Fires Council made up of Potawatomi, Ojibwe and Odawa, collectively known as Anishnabek peoples.”

Staying connected to one’s heritage is important to health according to Ms. Braiuca.  “Citizen Potawatomi Nation has members globally. They have the first population representative legislative government of contemporary Indian Nations.  We live everywhere are all connected via …  CPN FaceBook pages and CPN website.”

“Native Peoples sharing their journey to wellness”is the tagline for the Wellbound Storytellers blog.  And the journey to wellness is definitely needed among Native People.

According to the Indian Health Service of the US HHS Fact sheets, native peoples have a lower life expectancy than all the races of the US.  The leading causes of deaths according to 2005-2007 data, are heart disease, cancer, unintentional injuries and diabetes.  Native Peoples have higher rates of death by alcoholism (552%), diabetes (182%) and unintentional injuries (138%) than other Americans.

Ms Braiuca points to history in explaining much of the health disparities that plague Native people.  “Native health is a concern in all health areas. Disparities are woven into [our] history [as a result of the] 500 years of Colonial policy debacle.”  The issue of trust in western medicine is key among native culture “for example smallpox blankets, commodity food, Indian Health Service, reservations, removal [and] because traditional healthcare [has been] taken away,” Ms. Braiuca recounts. In fact “diabetes, cancer, and loss of culture and [traditional] medicine and language are tightly woven,” she says.

Native American genetic make up was not designed for Western diet and cultural habits.  Diabetes is a major health problem among native people.  The reasons vary but include “lack of prevention, poor healthcare and commodities like flour and sugar and lard, used to make fry bread which is not a traditional food!”  Traditional foods are the “three sisters– corn, squash, beans– and wild rice, fish and wild game,” Ms Braiuca says.

Another risk factor for Native people is smoking.  “We have the highest rates of smoking of any population in the US, over 40%,” Ms. Braiuca states.  However she is clear that this problem is connected with the recreational use of commercial tobacco, not from traditional, sacred uses.

Because of the issues of mistrust, any prevention effort must be community based. It is “imperative to [have] buy in of the community… plus LONG relationship building,” she says.  Part of the problem is a lack of native specific research which is hindered by tribal sovereignty, health systems and issues of trust.  The Center for American Indian Community Health, where Ms. Braiuca works, is one of the few places in the country doing community based research with Native Americans.

The Wellbound Storytellers blog employs all kinds of technology “oral/audio, video, art,  and written” to get their message across.  Most of the stories are neo-traditional “as in tradition being born but also recalling traditional stories,” Ms. Braiuca clarifies.  This is because traditional healing stories are unique to particular nations and these stories can only be told by certain individuals, elders.  Lamsam-Teresa-1449-5x7-color-qty001

According to Teresa Lamsam, another Wellbound Storyteller, those specific  individuals have a responsibility for the story. “Most of the stories that would be relevant [to healing] are considered to have healing within the telling of them — which is what creates the responsibility for the person who carries the story.  The person who receives the story also has responsibility.  Usually, a ceremony must accompany the story.”

Bringing back the story to heal is the message of the Wellbound Storytellers.  “Storytelling is not just limited to the younger generation listening to the older one, it is perfectly appropriate to flip that script.”  And that is just what these storytellers are trying to do.

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Tomorrow Isn’t Promised

“Sadly people always believe they will have time later; trauma taught my family tomorrow isn’t promised.”  Alisa Hughley 2012

At 16, Carey Hughley excitedly showed his little sister, Alisa, 12, his brand new driver’s license.  He proudly explained all the information on the license, including the big heart.  “You’re an organ donor?” she asked.  “Yeah…I’m not gonna need ‘em when I’m dead,” he said. That answer stayed with her.

At Jordan High School, in Durham, North Carolina , Carey was an athlete, swimming on the team that set the state record in the 200-meter freestyle relay.  He was also an artist, musician, song writer and poet.

In 1997 Carey attended J. Sergeant Reynolds Community College in Richmond, Virginia and  planned to transfer to another school and study music.

At age 21, his life was cut short when he was shot at point blank range by a fellow student, someone with undiagnosed paranoid schizophrenia.  He arrived at the hospital and pronounced brain-dead.

In the hospital, his family faced a difficult decision.  Alisa remembered  her brother’s wish.

Today Alisa Hughley is a health communication specialist.  Her journey into health advocacy started with telling the “world about the lives Carey saved.”

At the Hughley’s church in Durham, a woman had shared her story of dialysis and being placed on the UNOS waiting list for kidneys.  At Carey’s aunt’s church in Virginia another woman was near death and on a waiting list.  The family directed Carey’s kidneys to each of them.  Amazingly the  kidneys were a match for both women.  The family later learned that Carey’s liver had gone to a  47 year old father of three and one of Carey’s lungs went to a woman who was able to go back to work.

There are 25,000 organ tranplants a year in the US, but every day, 16 people on transplant waiting lists die. According to the US Department of Health and Human Services Office of Minority Health, the rates of diabetes and high blood pressure, two conditions that put peoples organs at risk of failure, are higher among African Americans.  African Americans  make up 29% of the total candidates currently waiting for transplants yet they comprised 14 percent of organ donors.

Alisa ‘s advocacy focuses on increasing deceased donations among the general public but also among minorities.  “Members of the minority communities, both blacks and latinos, are particularly resistant to donation; certainly above a certain age.  Minorities don’t realize how many other minorities are in need of organ transplants. I really try to explain how they already know someone on dialysis in kidney failure.”

One of the ways Alisa advocates is by explaining how a person can come to need a transplant.   “Hypertension and diabetes can lead to kidney failure…causing a need for dialysis and finally the need for a transplant.”

There are many misconceptions around organ donation, most born of a distrust of the healthcare system.    “Many minorities believe their organs will go to Dick Cheney.”  She works to dispel myths like organ donors can be denied a funeral or that if organ donation is indicated on a  driver’s license medical professionals will be less likely to save the individual in emergency situations.

End of life planning is a difficult topic to discuss.  But as a health activist, Alisa believes that it is possible to move people to action by getting them to feel.   “Art creates emotion which motivates action.  Poetry, or a skillfully told story, can be art.   I try to elevate my family’s story to art.”

Elevating end of life planning to be a part of everyday discussion is a challenge.  She believes that when Carey shared his decision to be an organ donor, he  took the first step in his end of life planning.   “Sadly people always believe they will have time later; trauma taught my family that tomorrow isn’t promised.”

Alisa definitely feels Carey lives on through organ donation.  But she felt she needed to do more.  “Homicide robs victims of their identity.  They are obscured by the media‘s  focus on the murderer.”

Throughout high school and college Carey wrote poetry in notebooks that he saved.    In the hospital where Carey died, Alisa promised her mother that she would publish her brother’s poetry.  Grief and life interrupted her quest, but over the course of 12 years  Alisa pulled together Carey’s notebooks, his photographs and remembrances to create the book III Gifts.  

His voice was silenced before he could share it.  I became his voice.    III Gifts gives Carey his identity  back.”








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Communicating through photos: Health Advocacy meets Occupy Wall Street

Perhaps it was all started by Frank Warren’s Post Secret project in November 2004.  Whatever its beginnings, using stark note cards to tell a story in video or still photography has become an important and intense vehicle of storytelling on the Internet.

Teens have been using index cards in videos to describe their despair at bullying, their secrets and their understanding of faith.  One teenager, Ben Breedlove, just used this format in December 2011,  to describe three near-death experiences that gave him peace in facing death.  His family posted the video after his fatal heart attack on Christmas Day, 2011.

Occupy Wall Street has also been using this style, in still pictures,  to allow people to self-identify as part of the movement and to tell their stories.  Hundreds of people have added their stories.

One example of this compelling format is Stephanie Sauter’s Facebook post.   It is also an example of a message found in many other Occupy Wall Street narratives.

After conducting a random and cursory review of  200 October postings on  the Tumbler website,  160 of those postings chronicle the negative impact that health (and the health care system in the US) has on personal financial status.  These essays trend around similar themes.

Many of the 160 posts described major medical crises.  Health insurance was unavailable for  the following reasons:

1) Employers had discontinued providing health insurance, or employers didn’t provide it to begin with.

2) The individual who posted was self-employed and couldn’t  afford health insurance.

3) The individual had no health insurance due to unemployment.

4) The individual was working at “part-time” jobs which generally have no benefits.

5) Health insurance premiums kept rising and pay didn’t keep pace with the rise in premiums.

As in the case of Ms. Sautter, others experienced a worsening of their medical condition because of a delay in care, thus increasing the cost of their care in both money and health.

Care of eyes and teeth were of neglected out of necessity.

Denial of coverage due to pre-existing conditions and extremely high premiums due to rare or genetic conditions were noted.

Care for mental health, medications and therapy, were not covered by health insurance and required out of pocket expenditures.

Several veterans expressed the effect of war on their health and decried the lack of affordable mental health services.

Caring for elderly family members, to keep them out of nursing homes, has caused heavy financial burdens.

Even those with health insurance describe being overwhelmed by medical bills.  Many are using up life savings to pay for medical care or medications.

These postings create a clear and compelling picture of the enormous burden that is being placed on the citizens of the US.

Read the posts.  Then decide for yourself.  Why shouldn’t healthcare be a right for all Americans?