This link will download the power point I presented at the British Association for the Study and Prevention of Child Abuse on April 16, 2012 as referenced below in the post The Tragedy of Icebergs.
The Tragedy of Icebergs
30 Apr 2012 Leave a comment
Sunday, April 15, 2012, was the 100th anniversary of the sinking of the Titanic, the disaster that caused more than 1500 deaths and resulted in myriads of books, songs, and movies. The current re-release of the James Cameron 1997 Titanic in 3-D is the highest grossing film in history.
Coincidentally (or maybe not so coincidentally) on April 15, 2012, I was in Belfast, Ireland where Titanic was built. I was there for the British Association for the Study of Child Abuse and Neglect (BASPCAN) Congress to present on a project I have developed called Moving Mountains. All over Belfast were reminders that this was the original home of the ship that was built to be unsinkable. There was a model made of balloons in the Victoria Mall, pictures of the ship on feather banners hanging from lamp posts, various menu items (unsinkable baked potatoes and Titanic ale,) and signs that read, “She was all right when she left here!” implying that the workers of Belfast had done a fine job building her and someone else was responsible for wrecking her. Then there was the Titanic Experience, with ads touting, “inside, the state-of-the-art exhibits make you think you’re part of the maiden voyage. Don’t panic. You aren’t.”
I must say I found the museum quite interesting with even an amusement park-like ride that takes you through the construction process in the belly of the ship. One oddity, however, that my daughter. Alex (who came along to the conference and then subsequent jaunt out to the west coast to Doolin with it’s fine pubs, music and ever flowing Guinness) and I discovered was that in the digital reenactment of the sinking, the ship tips up, stern to the sky, slightly twists and then slips silently under. I think we all know that the ship actually sank about three quarters under and then split between stack 3 and 4 with the two pieces, bow and stern sinking separately. Asking staff at the museum why this was not depicted correctly we were told, as if no one else had noticed, that seeing the ship break apart might be too upsetting for people. Hmmmmmmm 1,500 people dead, but a digital reproduction of the ship breaking apart might be too upsetting?
This then is the story of a ship, but what is the story of the iceberg? The exterior of the museum actually looks like it could be either the Titanic or the iceberg.
This makes me wonder about the iceberg that was just a piece of nature, beautiful glittering ice floating like a moving mountain on the sea, and like the ship, a massive traveler in the north Atlantic. Icebergs are composed of freshwater and therefore are slightly less dense, 8/9s the density of seawater so only 1/9th of the ice is above the water surface. After breaking away from a glacier, bergs flow along, most of their mass and importance unseen as they are carried by the Gulf Stream into warmer and warmer waters to slowly melt and disappear entirely. Unless there is a tragic meeting with a ship, they are doomed to be 90% unnoticed, unrecognized, undetermined. So the phrase “tip of the iceberg” has flowed into our vocabulary, meaning there is ever so much more than meets the eye.
So meanwhile back at the conference, along with many other professionals including two of my dear friends/colleagues, Linda Burnside, founder of Avocation in Winnipeg, Canada, and Theresa Covington, Director of the National Center for Child Death Review, I was a workshop presenter. My presentation titled Moving Mountains: Enabling Children, Disabling Child Abuse was based on several years of research and project development to provide child abuse identification and treatment for children with disabilities. Early research in the field of child abuse prevalence determined that children with disabilities were abused at approximately twice the rate of typical children. Later studies reported that the rate was much higher, at least 4 to 10 times the rate of typical children, very difficult to identify and determine. Working in the field of child abuse treatment I found that often referrals of children who had been abused did not include information about their disabilities and often children with disabilities were not referred for child abuse evaluations. Children with disabilities who were abused were so often not identified, not treated, not believed, not listened to, not recognized; they were submerged deep in that unseen iceberg, only the tip noticed and helped. Reaching children with disabilities is challenging. Like typical children they are usually abused by people they know and who care for them; kids with disabilities just have so many more caregivers and people they have to depend on for their day to day activities. The challenges of identification of abuse of children with disabilities and their ability to disclose are myriad. In addition, the justice system discounts the testimony of children particularly with cognitive disabilities; like children under the age of 5 they are usually not considered credible and swearable and cases can only proceed if there is a witness or corroborating evidence. So the abuse and deaths go unnoticed, unrecognized, undetermined.
After the Titanic sank and the International Ice Patrol was formed in 1914. several pieces of legislation were passed to assure that passengers on ships were safe: a requirement for ships to check the Ice Patrol’s iceberg sightings, carry enough life boats, avoid ice fields. Since the deaths of 1,500 people of the Titanic, there have been no other sinkings of ships and loss of life due to collisions with icebergs. In the U.S alone more than 1,500 children a year die from abuse; 90% of these are children under the age of 3. The number of children with disabilities who die from abuse is undetermined. Year after year the tragedy continues.
So those of us across the spectrum of health providers must be vigilant observers…and listeners. Children of differing abilities based on their age and on their abilities have different ways of communicating with us and we need to be paying attention to any indicators that a child is at risk or is being treated abusively. We all need to remember that what is obvious, the glowing brilliant tower above the water is not our only concern. Children, especially those who cannot always speak for themselves, who go unnoticed beneath the surface are the most vulnerable. We all need to be committed to assuring their care, safety and well-being. We are all called to be look-outs to save the lives entrusted to us.
Resources:
www.nlm.nih.gov/medlineplus/news/fullstory_121601.html
www.disabled-world.com/disability/…/child–abuse–disabilities.php
Child Abuse and Children with Disabilities
childabuse.tc.columbia.edu
Violence against Disabled Children
www.unicef.org/…/UNICEF_Violence_Against_Disabled_Children_.
7. Sexual abuse of children with disabilities
http://www.coe.int/t/dg3/children/1in5/Source/…/Brown.pdf
Conversations of the Stars
09 Apr 2012 1 Comment
This past weekend in New York both Passover and Easter were celebrated. Passover being a commemoration of the passing over of the angel of death thereby sparing the lives of Jewish firstborn children. Easter is the celebration of Jesus rising from the dead after being crucified. Whether you participate in these religious rituals and believe in the miracles of lives saved/a life rekindled, or if you just enjoy the family and friendship of a Passover dinner or revel in the fun of an Easter egg hunt, or have no personal connection with either of these religions or these holidays, it is evident that they are both about life and death being inextricably bound together.
Those of us who work in public health frame much of what we do in terms of health problems that increase morbidity and mortality rates, interventions that yield outcomes of lowered rates of mortality and morbidity, measuring the outcomes in lives saved/lives lost, quality of life, costs/benefits, basing evaluations of determinants and distributions of health. There are experimental studies, quasi-experimental studies, ecologic studies, observational studies, cross-sectional studies and case/control studies. This all sounds very boring and very academic, but actually it is all about life and death. A flip through the most recent issue of the American Journal of Public Health reveals: Genetic Physiological, and Lifestyle Predictors of Mortality in the General Population; Effect of Intensity and Type of Physical Activity on Mortality: the Whitehall II Cohort Study; US Cultural Involvement and Its Associations With Suicidal Behavior Among Youths in The Dominican Republic; Worrying About Terrorism and Other Acute Environmental Health Hazard Events; The Role of Health Systems and Policies in Promoting Safe Delivery in Low- and Middle-Income Countries.. To those of you outside the public health world and even to some of us in the public health world, these studies may seem esoteric and abstract, but they are really about lives lost, lives that can be saved, lives that can be rekindled.
I participate in a few Linked In forums: Global Health Public Health, Water Sustainability, my New York Medical College group. The conversations in these groups also are about life and death and pretty much everything in between. I have met some amazing people in these conversations as we talk about research and programs and we share our own personal thoughts, feelings and ideas. I have met Kato and David and Mebra and Cornelia and Gordon and Mary and Keith and so many others who experience life and death on a very personal level. There has been a long-running Global Health discussion on why maternal mortality remains so high in Sub-Saharan Africa which was started by the question raised by Jane on March 4. A couple of weeks ago I consolidated responses into several broad categories: resources, education for girls and women, poverty, tradition and culture, funding, empowerment and the topic that keeps surfacing, political will. I’ll add this to the end of this post. There have been comments that cite statistics and data, programs, outcomes, but mostly there have been the comments about hurt and frustration and challenges and through the conversations incredible commitment to save lives and increase health and well-being. And what I think often is not communicated in the research and the peer reviewed articles, is PASSION.
There has been another conversation about why public health is so often unrecognized as the powerful agent of change and life-saving interventions. Think about the media, films, songs, TV shows. Where are the public health professionals? There are sexy doctors, there are romantic lawyers, there is Nurse Jackie, definitely detectives and police officers and crime lab specialists. Public Health?
The passion of public health, the commitment to saving lives, the miracles that are perhaps sometimes lost in the data need to shine through like stars. I invite all of my colleagues in public health to tell the stories of life and death and anyone who will listen, who must listen, to hear. When I think about the challenges of saving lives, especially in maternal health and birthing, I think about the last verse of W.H. Auden’s poem September 1, 1939:
Defenseless under the night
Our world in stupor lies;
Yet dotted everywhere,
Ironic points of light
Flash out wherever the Just
Exchange their messages:
May I composed like them
Of Eros and of dust,
Beleaguered by the same
Negation and despair
Show and affirming flame.
To my dear colleagues around the world who continue to teach me about your work and commitment, I thank you for being the stars continuing to shine and show the way to life.
Why is maternal death still high in Sub Sahara Africa despite all the effort being made globally? Posted by Jane on March 4, 2012
Literature referenced:
http://www.who.int/hpr/NPH/docs/declaration_almaata.pdf
Annie Feighery http://participatoryapi.posterous.com/three-years-of-the-bright-conference-on-brandi
Hogan, M.C., Foreman, K. J., Naghavi, M., Ahn, S.Y., Wang, W., Makela, S.M., Lopez, A.D., Lozano, R., Murray, C. J. L. (2010). Maternal mortality for 181 countries, 1980-2008: a systematic analysis of progress towards Millennium Development Goal 5. www.thelancet.com/journals/lancet/article/PIIS0140
Unger, J.P., Ven Dessel, P., Sen, K., & De Paepe, P. (2009). International health policy and stagnating maternal mortality: is there a causal link? Reproductive Health Matters. 17(33), 91-104.
Karel Amaranth, MPH, MA. MPH Thesis: Safe Motherhood By Design: A Public Health Program Planning and Evaluation Project: Empowering Women to Prevent Maternal Mortality Contact: roguewaverose@gmail.com
Cornelia Osim Ndifon: Determinants of Maternal Mortality Amongst Unbooked Patients in Calabar Teaching Hospital Nigeria: A Four Year Study. Contact: lovecornel2002@yahoo.com
Riders for Health www.riders.org
Holistic care, Inter-relationship of resources, workforce, education, poverty reduction, nutrition
Trends in responses:
EMPOWERMENT: Social injustice/human rights issue/gender equity
Women’s empowerment as a determinant of higher education, reduction of poverty, social status and ability to make informed health choices including spacing of pregnancies, contraception, healthy birthing practices, prevention of HIV
Women’s health as holistic including empowerment: Inter-relationship of MDGs: maternal/child health, water, nutrition, sanitation, transport, education, agriculture
Community empowerment: Programs that Ask women what they want and need
TRADITION/RELIGION/CULTURE
Early marriage and child bearing
Religions that do not allow contraception
Women believe it is their fate or Allah’s/God’s will for them to suffer and die.
Cultural implications of having many children, i.e., virility of the father
Male dominated society (suggestions to engage men, rather than condemn them)
Female circumcision, violence against women
Very high fertility rates and multiple births (related to cultural and socio economic pressures)
EDUCATION OF WOMEN AND GIRLS
Specific to health/child bearing/reproductive health
General education of women and girls; reducing illiteracy
Developing women’s leadership
POVERTY
Association of poverty with low social status, poor nutrition*, no or limited access to healthcare,
Impact particularly on pregnant teenaged girls and unmarried women
Impact on low birth weight and infant mortality
*Nutrition: Importance of reducing anemia, building strong bones and resistance to infections.
HEALTH RESOURCES
Supplies:
clean birthing kits, misoprostol, oxitocin, equipment in hospitals (often inadequate)
Healthcare facilities/interventions:
Inadequately staffed and equipped.
Not accessible by rural women
Services like EmOC not available to all women
Distance from healthcare facilities/transportation
Effectiveness of focus on home deliveries to reduce MMR/home birthing as a positive choice with clean supplies and birth attendant
Skilled attendance at births:
Traditional birth attendants
Negative: interfere with safe birthing
Positive: need to be recognized, trained and engaged since many women continue to use them
Midwives
Community Health Workers: part of a decentralized health delivery system; performance based financing
Physicians (very little mention of physicians)
Limited resources for training any of the above health providers.
Lack of healthcare infrastructure to deliver services to women
GOVERNMENT/POLITICAL WILL
Leadership not committed to healthcare infrastructure
Government policies that do not favor women
Inefficiencies in government, corrupt use of funding and cumbersome bureaucracies
Governmental should encourage economic development to support healthcare delivery infrastructure that supports community in a decentralized health system; grass roots empowerment rather than out of touch corrupt government programs
Improvement in MMR even in low income countries if there is political will is focused on health
FUNDING (Government and Private Sector)
Funding channeled to women’s health, education and empowerment
Informed donor base to ally funding for poverty reduction with funding to reduce maternal mortality
Performance based financing
SCIENCE
Evidence based practices: what evidence is used to support programs and interventions?
Quality assurance in programs.
Research and successful interventions: sharing the knowledge and replicating successes
Liberty, Death and a Profound Connection
02 Apr 2012 2 Comments
April 2, 2012
I am wondering as I wade through the massive amount of articles and arguments and political posturing, how my colleagues around the world viewed last week’s discourse back and forth about the United States’ Health Care Reform. Those of you who live in countries where universal health care is the standard and those of you who live in countries where there is a dearth of health care services, please comment.
All Americans are quite familiar with the quote, “Give me liberty or give me death.” It was Patrick Henry addressing the Virginia Convention on March 23, 1775, at St. John’s Church in Richmond, Virginia. Apparently the phrase swung the balance in convincing the Virginia House of Burgesses to pass a resolution for the Virginia troops to join the Revolutionary War. Reportedly, those in attendance, upon hearing the speech, followed Henry’s cry of “give me liberty or give me death!” Maybe March is the time for talk of liberty because it is spring, a time to be footloose and fancy free, we are unbound by the cold and snow and everything seems to be growing wild and unfettered. As in March 1775, the word liberty has been prominent in the news this week, not in reference to a war but in reference to the Affordable Care Act AKA Obamacare. An article in The New York Times, “Appealing to a Justice’s Notion of Liberty” notes that Justice Anthony M. Kennedy will most likely be the swing vote in the decision on whether the Affordable Care Act survives intact or not. Arguments on both sides are compelling and of course those presenting the arguments are well versed in Justice Kennedy’s penchant for liberty. The following statements from the opposing sides both focus on individual freedoms:
Pro-Health Accountable Care Act:
“There will be millions of people with chronic conditions like diabetes and heart disease,” he said, “and as a result of the health care that they will get, they will be unshackled from the disabilities that those diseases put on them and have the opportunity to enjoy the blessings of liberty.”
Anti-Accountable Care Act:
Paul Clement, representing 26 states challenging the law, had a comeback.
“I would respectfully suggest,” he said, “that it’s a very funny conception of liberty that forces somebody to purchase an insurance policy whether they want it or not.”
The choice it seems to me is between freedom from disease and freedom from having to purchase health insurance. It’s a choice of health or money. Maybe I am oversimplifying this but if it’s an argument about liberty I think that’s pretty much it. Even Mitt Romney when he was Governor of Massachusetts saw the mandate for individuals to purchase health insurance not as a loss of liberty but as a “personal responsibility” which is, along with liberty, a very American ideal.
My question is, where are the children in all of this? If kids were wearing the black justice gowns would they decide that they should have the liberty of good health or that the grown-ups should have the liberty to spend money on whatever they want. There are some organizations that do speak for children, that have advocated for kids: the Children’s Defense Fund, the Children’s Health Fund, the American Academy of Pediatrics. (You can Google any of these groups and see their comments about the Affordable Care Act; I’ll give you some links below.) So here is what the “profound connection” between health care and liberty, as referenced by Solicitor Donald B. Verilli, Jr, really means.
For too long, too many American children have gone without the treatments, medicines and checkups they need, whether it’s the boy with asthma who couldn’t get insurance and ends up in an intensive care unit, or the young girl with diabetes who misses checkups and needs weeks to get her sugars readjusted, or the kids who fall behind on their vaccines and screenings and suffer devastating illnesses that could have been prevented.
When I think about children I have met when I traveled to India or Nepal or the favelas of Rio or in the South Bronx or in a homeless shelter in Chicago, or tragically resting in their graves in Reno, Nevada, I wonder, what would they answer? I think they would answer that they just want to be free to go out and play, and run and jump and be silly and have fun. And they just can’t do these things if they are sick.
Liberty or death? The question is irrelevant. There is only a relevant answer and that is life, liberty and the pursuit of happiness, and none of these is possible without health.
Justice Kennedy and all the other eight justices, take off your black gowns, go out and play with some kids and you’ll know how to vote.
http://www.childrenshealthfund.org/sites/default/files/children-and-new-health-law-white-paper.pdf
http://www.youtube.com/watch?v=cebrxLvzVik
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