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The Immortal Life of Henrietta Lacks: A Story Worth Telling and a Model for Storytelling
Reading Time: 3 minutes
I just read the New York Times best-seller “The Immortal Life of Henrietta Lacks.” Henrietta Lacks was a black woman treated for cervical cancer at John Hopkins in the early 1950s. It was during this treatment that her cancer cells were taken without her knowledge, grown in a laboratory, and sold to scientists around the globe. Henrietta died in 1951 at the age of 31, but her cells, known to scientists as HeLa, live on in laboratories and medical schools around the globe. HeLa was vital to the development of the polio vaccine, cloning, gene mapping, in vitro fertilization, and much more. In 1996, Roland H. Pattillo, M.D., a professor in the Department of Obstetrics and Gynecology of Morehouse School of Medicine, began the annual HeLa Women’s Health Conference, and the BBC filmed part of its documentary “The Way of All Flesh” at the event. Yet, before this book, her family was virtually unknown to the general public and could not afford health care that would give them access to the medical advances their own mother made possible.
While the book could have easily been couched as a “historical” account, white, female author Rebecca Skloot carefully demonstrated the very real, very contemporary significance of the story. As noted on the author’s website: “The Immortal Life of Henrietta Lacks tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew. It’s a story inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we’re made of.” In fact, the last chapter of the book describes the yet unsettled legal context in which these debates continue. I hope we can expect the same treatment by the Oprah Winfrey/Alan Ball HBO movie being made.
I was especially impressed with the author’s continuing commitment to Henrietta Lacks’ family and to others like them. The author founded the Henrietta Lacks Foundation. According to the foundation website: “The Henrietta Lacks Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent. The Foundation gives those who have benefited from those contributions — including scientists, universities, corporations, and the general public — a way to show their appreciation to such research subjects and their families. The Foundation has already awarded 19 grants, including grants covering tuition and book expenses, health care expenses and emergency needs of multiple members of her immediate family. The Foundation’s goal is to continue to help the Lacks family as well as others with similar needs who may qualify, such as descendants of research subjects used in the famous Tuskegee Syphilis Studies, those injected with sexually transmitted diseases without their knowledge by the US Government, and others. To be eligible for a grant, an applicant must prove financial need and have made, or be the descendant of someone who has made, a significant contribution to scientific research as a research subject, including those who have unwillingly or unknowingly been used in research or contributed biological materials for research.”
This book will change how you think about race, medicine, science, and your own control of your body. Not only it is a must read, but I believe it is an example of responsible and ethical storytelling with and for the people whose stories are being told.
The Myth of Meritocracy
Reading Time: 5 minutes
People who know me know that I have a healthy National Public Radio (NPR) addiction. As of late, it has become a habit to tune in at work. On Tuesday as I sat at my desk, On Point, a daily opinion call-in show, aired a segment, “Jobless in America” (http://onpoint.wbur.org/2011/08/16/jobless-today-in-america). Two of the guests, both white and unemployed, talked about their experiences with unemployment and their sense of betrayal for “having done everything right,” yet finding themselves unemployed: a situation they never anticipated.
Although I empathize with those who have lost their jobs during the ongoing recession and are experiencing economic hardships, I must admit that I’m also partially annoyed by the notion that White middle class workers should expect a guaranteed job and a certain lifestyle. As the introduction to the show states:
…There are not enough jobs, by a long shot. It’s crushing individuals and families right now. We’ll hear from some today.
And it’s putting a huge dent in our national future. Changing things we love most about this country.
As I listened to the show and even now as I read these words, what I hear is the collective anxiety and loss of identity that middle class White Americans are experiencing. This is not the first NPR or other media outlet show that has broadcast the woes of our society as being the conundrum of those who ordinarily would expect to never have this problem.
From my position as an African American woman, people of color have historically experienced unemployment and underemployment without questioning whether or not we should believe in the American Dream. In fact my favorite poem, Langston Hughes’, “Harlem” or “A Dream Deferred” (depending on the publication source) as well as the Lorraine Hansberry’s play, “A Raisin in the Sun” speak to the frustrations that people of color, in this case African Americans, have suffered historically when they have tried to assert their right to life, liberty, and the pursuit of happiness. Rather than the NPR story continuing to promulgate the notion that our current joblessness threatens the fabric of our society, I posit that this is an opportunity to really question the notion of meritocracy.
We live in a society that promotes the idea that as individuals we all have the right and ability to realize our dreams through our own hard work and effort. But when you peel back the layers of that notion, you find that we are a nation of individuals who stand on the shoulders of those who have come before us. David Horwitt (2008) reminds us that every society employs myths in order to explain how those who are privileged are more deserving that those who are not. In his essay, “This Hard-Earned Money Comes Stuffed in Their Genes,” Horwitt discusses the multiple ways in which people gain advantage through no effort of their own. A primary means of unearned gains is inheritance. Though he cites a Forbes article about the wealthiest 400 people who largely inherited their wealth, consider the more typical types of inheritance: a house that is passed down, or jewelry, stocks and bonds, property, vehicles, and so on. These are all units of wealth that lessen the burden upon the individual who now has a commodity simply because the parent left it to the child. Another form of this is a business. Lucrative or not, it is collateral that can be negotiated for personal profit and gain. Other, less obvious advances are college admissions. Many colleges and universities (particularly those top-ranked colleges and university) admit just as many legacy applicants as they do non-legacy applicants. Today, getting into a college or university has become increasingly important. Even with our current downturn, those who have a college education have lower rates of unemployment[1] 5.4% in comparison to 10.3% for those who only have a high school diploma
We are suffering from an unprecedented economic shift. We are no longer alone, but are competing for jobs in a global economy where no one is safe. However, for me the great concern is the jobless rate among people of color. According to the BLS Monthly Labor Review (2011), although the fourth-quarter unemployment rate for Whites fell by .05% to 8.7% it remained in the double digits for African Americans and Hispanics at 15.8% and 12.9%. Prevailing myths may try to convince us that the disproportionate rates among people of color is due to their lack of educational attainment and experience, but as the recent settlement of a 1995 lawsuit against the Chicago firefighter’s entrance exam demonstrates, African American applicants who otherwise qualified[2] were not hired or denied promotions. As a result, the Chicago Fire Department will have to hire 111 firefighters between now and March 2012 as well as pay the remaining 6000 candidates $5000.[3]
A final example is a recent article in Science which investigated the National Institutes of Health reveals that Asians were 4% and African Americans were 13% less likely to win NIH funding. Even when controlled for education, training, previous research rewards and publication record, African Americans were still 10% less likely to receive funding.
These examples represent a need for our society to turn and face ourselves. In order to actually have a meritocracy, we have to be able to guarantee equal access and compensation for equal talent and skill which will require the reformation of policies, procedures, and frameworks that continue to marginalize people of color.
Works Cited
“City to Hire, Pay Back Black Firefighters as Part of Settlement.” Chicago Fox News: Chicago. 17 August 2011. Web. 18 August 2011.
“Education Pays…” The Bureau of Labor & Statistics. 4 May 2011. Web. 18 August 2011. http://www.bls.gov/emp/ep_data_occupational_data.htm
Ginther, Donna K.; Schaffer, Walter T.; Schnell, Joshua ; Masimore, Beth; Liu, Faye; Haak, Laurel L.; Kington, Raynard. “Race, Ethnicity, and NIH Research Rewards. Science 333. 19 August 2011. 1015-1019.
Horwitt, David. “This Hard-Earned Money Comes Stuffed in Their Genes.” Eds. Karen E. Rosenblum & Toni-Michelle C. Travis. 5th Edition. New York: McGraw-Hill, 2008. Print.
“Jobless in America.” On Point. NPR: WBUR, Boston. August 16, 2011. Radio.
Theodossiou, E & Hipple, S. “Unemployment Remains High in 2010” Monthly Labor Review March 2011. Web. August 18, 2011. http://www.bls.gov/opub/mlr/2011/03/art1full.pdf
Vedantam, Shankar. “In the Boardrooms and in Courtrooms Diversity Makes a Difference.” Washington Post . 17 January 2007. Web. 18 August 2011. http://www.washingtonpost.com/wp-dyn/content/article/2007/01/14/AR2007011400720.html
“White Fire Fighters to Share $6M Settlement.” NBCUniversial, Chicago. 11 March 2009 Web. 18 August 2011. http://www.nbcchicago.com/news/local/White-Firefighters-to-Share-6M-Settlement.html
Comic © Gary Varvel (http://blogs.indystar.com/varvelblog/)
[1] For more specific information see the Bureau of Labor & Statistics May 4, 2011 graphic showing that in 2010 those who have less than a college education the unemployment rate was 14.9% compared to 10.3% for high school graduates and 9.2% for those who have some college compared 5.4% for college graduates. The graph includes rates of unemployment up to those who have a doctorate degree as well as gives the median weekly earnings for each of the educational attainment levels from less than high school up to the doctorate level.
[2] According to the Associated Press article (2011), “Before being hired, they must pass the physical abilities test, background check, drug test and medical exam” (online, http://www.myfoxchicago.com/dpp/news/metro/chicago-black-firefighters-lawsuit-settlement-city-hire-pay-candidates-20110817)
[3] It’s interesting to note that in 2009 the same fire department settled a lawsuit in which 75 White firefighters alleged that because the 1986 lieutenants’ exam were “race normed” they suffered from reverse discrimination. They received $6 million to distribute amongst the group of 75, with a separate 100 firefighters receiving “tens of millions” with benefits for the same lawsuit. Even in settling litigation disputes, it seems, those who already had the advantage of gaining employment and moving through the ranks still received more compensation for discrimination which was not as economically and socially impactful. For more information see: http://www.nbcchicago.com/news/local/White-Firefighters-to-Share-6M-Settlement.html. Again the notion of a meritocracy where Whiteness should be rewarded for “doing my part” plays a role in the argument.
Back to School
Reading Time: < 1 minute
Teachers everywhere are preparing lessons to teach our children. In the minute it takes you to read this, teachers all over the world are investing their time and often investing their own money for your child’s literacy, prosperity and future. Thanks to teachers everywhere for all you do. We appreciate and respect you.
OUR BACK-TO-SCHOOL BUNCH
Bonnie: Doesn’t matter how old you are in my house, you can’t escape the First-Day-of-School photo or the mom and dad send off full of pride and hopes for the future. Pictured top left: BMac, a junior at Tate High School, Iowa City, IA.
Deanna: And they’re off…A picture of the boys on their first day of school—2nd and 5th grade already! Pictured top center.
Valerie: First there were three, now there is one. JMAN on his first solo day at elementary school since big brother is off to jr. high. and bigger brother is off to high school. Pictured top right.
Circe: My baby (ahem, son) off to high school, my daughter off to junior high, our new family member from France who was staying with us off to first day of school too! Pictured bottom left.
Mandi: My oldest off to first grade – and this year he made me stop one block from the school to kiss him good bye. Pictured bottom right.
West Wind’s 10th Anniversary: A Time to Give Back
Reading Time: 2 minutes
This year West Wind Education Policy, Inc. is celebrating its 10th anniversary. To honor the goals and purposes of West Wind, staff chose to celebrate by completing service projects in our community to support local K-12 education. In June, the West Wind team assisted the Mayor’s Youth Empowerment (MYEP) and Fast Trac Program as they transitioned into a new building. MYEP provides day-habilitation, respite, residential, after school and summer care opportunities for youth and adults with disabilities. The Fast Trac Program provides support for youth in grades 4 through 12, bringing together teachers, community leaders, families and students to provide activities, events, mentoring and academic guidance to students. The Fast Trac program offers the following as a statement of purpose:
“Our goal is change. Giving students a reason to change has always been the missing piece in motivating students to focus on their education. Since the FasTrac Program began, these students have exceeded all expectations set by themselves and by their parents. This program has grown from six original African-American students to currently over 100 students of all ethnic backgrounds. Additionally, the program assists students in 4th through 12th grade, now with a program for elementary school students, FasTrac-E, which follows each student in the program beginning in 4th grade, all the way through their high school career.”
MYEP and Fast Trac are amazing organizations, getting wonderful results for students. When we arrived, the staff was busy preparing materials for students and moving equipment through the rooms. Donated art work had been hung on the wall; games, books, and toys filled the rooms; foosball tables and televisions were available as well as school and art supplies. We spent the morning wiping out bins, locating missing puzzle pieces, dusting furniture, arranging books, and even moving a very heavy foosball table.
On the morning of August 3 the West Wind team joined other volunteers and organizers from To Gather Together, a local organization that gathers donations to buy school supplies from churches, individuals, businesses, and social services agencies. To Gather Together provides school supplies to over 3,000 children in Johnson County, Iowa. West Wind staff assisted by counting out supplies such as crayons, markers, folders, and paper. We sorted the supplies into stacks for specific schools and teams of volunteers delivered these the next day.
West Wind wants to offer our thanks to both the Mayor’s Youth Empowerment/Fast Trac Programs and To Gather Together for providing us the opportunity to support them in their work. Both of these programs are an amazing asset to our community and the staff and volunteers who make these programs function deserve a round of applause for their hard work and dedication to education for all children. Thank you on behalf of the West Wind team. It is heartening to work with individuals on the ground dedicated to educational opportunities for each and every child.
Best Practices for Organizing Online Communities of Practice
Reading Time: < 1 minute
[box class=”grey_box”]Written by Mandi Bozarth, Alyssa Rodriguez, and Circe Stumbo[/box]
This document discusses the “Best Practices” for managing an online collaboration site in support of professional communities of practice. Collaboration sites can provide professionals the space to work together across great distances in real time, allowing for work to be shared with immediacy, critiques to be offered in a timely way, and professional networks to be enhanced meaningfully across organizations.
How Adults Learn: What Do Reformers Need to Know?
Reading Time: 3 minutes
The West Wind Education Policy web site describes our work in the area of knowledge building and professional development as being based on theories of andragogy–or adult learning. The study of adult learning theory and experience in designing and supporting professional development for educators has taught us a lot about the way teachers and school leaders learn when engaging in professional growth experiences. Andragogy theories suggest that adults need to learn experientially and to be actively involved in the planning and evaluation of their instruction. We know that adults learn best when the topic is of immediate value. We know that experience (including mistakes) provides the basis for effective learning activities and that problem-centered learning rather than content-oriented learning is more meaningful to the adult. Educators, like all other adult learners bring with them a reservoir of experiences, but they also bring extensive doubts and fears to the educational process. Well-designed learning establishes an environment where each learner feels safe and supported, where the individual’s needs and uniqueness are honored, and where the participant’s abilities and life achievements are acknowledged and respected. A productive learning environment encourages experimentation and creativity, while fostering intellectual freedom.
Carrie Leana, a researcher from the University of Pittsburgh studied the influence of human and social capital in school settings. Her research suggests that social capital thrives in an atmosphere of mutual trust and collective practice. According to Leana, a school climate that is characterized by trust provides an environment where teachers routinely talk to each other, share the same norms, and hold strong agreement in their descriptions of their school’s culture. Her findings suggest that a trusting climate is more important than the teacher education level, teacher certification, or other human capital measures in predicting student achievement scores.
As federal, state, and local district leaders establish policies that seek to improve educator effectiveness, they are advancing requirements that are intended to change practices in human capital management. Reforms being considered aim at raising standards, ensuring that mentoring and induction supports are in place, offering quality professional development, and improving teacher preparation and performance evaluation systems. If these reforms are going to make a difference, the designers and implementers should consider how the intended and unintended consequences will impact the learning environment for educators. Those responsible for leading reforms should ask questions such as:
• Will reforms provide the infrastructure and the necessary funding to provide intensive professional development?
• Are there policies in place that allocate adequate time for professional growth and collaboration?
• Will performance review processes offer meaningful, accurate, and timely feedback in a way that enhances reflection and supports continuous growth in a safe culture?
• Are educator effectiveness systems designed to contribute to a culture of inquiry, trust, and professional collaboration or is there a risk they will contribute to learning environments that are characterized by competition and norms that create distrust?
• Are teachers full partners in discussions and decision making about changes to the educator effectiveness systems?
• Once changes are implemented, are they evaluated to determine whether the intended outcomes are accomplished? Have any unintended consequences occurred?
For those of us involved in the work of knowledge building and supporting policy developers it is key that we keep asking ourselves this question: What can we do to help policy leaders learn about andragogy, as well as human and social capital so they can make thoughtful decisions about how to build the capacity of educators?
Knowles, M. S. et al (1984) Andragogy in Action. Applying modern principles of adult education, San Francisco: Jossey Bass. Web reference site of Nan B. Adams, PhD . Southeastern Louisiana University.
Retrieved from:
www2.selu.edu/Academics/Faculty/nadams/etec630&665/Knowles.html
Smith, M. K. (2002) ‘Malcolm Knowles, informal adult education, self-direction and andragogy’, the encyclopedia of informal education, Retrieved from www.infed.org/thinkers/et-knowl.htm.
Leana.C. (2010) Social Capital: The Collective Component of Teaching Quality Annenberg Institute for School Reform | Voices in Urban Education p 16-23. Retrieved from www.annenberginstitute.org/VUE/wp-content/pdf/VUE27_Leana.pdf
Eight Elements of High School Improvement
Reading Time: 2 minutes
[box class=”grey_box”]Developed by the National High School Center at AIR, with contributions from Circe Stumbo[/box]
Research on comprehensive school reform suggests that improvement strategies have the best opportunity for success and sustainability when they take into account the broad array of elements that make up the system being improved. Yet, many current high school improvement initiatives are focused only on specific priority topics (e.g., dropout prevention), specific intervention strategies (e.g., advisories, small schools), or program initiatives (e.g., Check and Connect). Although such approaches can have an important impact, their reach is too frequently limited to a subset of systemic reform elements. Implementing such initiatives may lead to success in addressing specific needs, but the probability of widespread improvement is small when initiatives are implemented in isolation from the broader education systems within which they operate.
The National High School Center’s goal is to encourage researchers, policymakers, and practitioners at all levels to engage in comprehensive, systemic efforts to maximize attainment for all high school students, with a focus on those students who have been historically underserved. To this end, we have developed a framework that consists of eight core elements and provides a lens for mapping school, district, and state high school improvement efforts. The exercise of mapping should inform strategic planning and implementation efforts by illuminating the connections among elements, revealing strengths and gaps in current state and district policies, and highlighting the stakeholders who should be aware of and involved in future improvement efforts.
This document offers descriptions of the eight elements of high school improvement:
- Rigorous Curriculum and Instruction
- Teacher Effectiveness and Professional Growth
- Stakeholder Engagement
- Organization and Structure
- Assessment and Accountability
- Student and Family Involvement
- Effective Leadership
- Sustainability
Four points are important to note. First, the particular combination or separation of the elements is less significant than an understanding that these elements, which are often treated as discrete, actually are inter-related parts of a single system. Each element has an impact on the others, so understanding their interconnectivity is a critical task. Second, a major challenge of using this framework is the risk of overwhelming those involved in the work. Every high school improvement initiative does not need to have some activity in each of the elements at every moment. Rather, mapping the implications of an improvement initiative among all affected elements at the outset will lead to more strategic decisions initially and over time. Third, every high school and related high school improvement initiative is situated in a unique geographic, cultural, demographic, political, and societal context, which influences the school’s vision, mission, structure, culture, and outcomes. Any efforts at high school improvement must take into account these particular school- and system-level contexts. These considerations affect each element and must be explicitly addressed when improvement strategies are devised. Fourth, if scalable and sustainable improvement is the ultimate goal, it is likely that the implementation of improvement efforts will require organizational change. No strategy can be complete without attention to the challenges of leading change within the respective organizational cultures.
Interview with Dr. Cynthia Osborne, University of Texas
Reading Time: < 1 minute
Reform strategies give opportunities and voice to students
Reading Time: < 1 minute
The National High School Center this summer is modeling two strategies that are central to education reform efforts: first by providing community-based education opportunities for local youth and second by giving voice to that student experience.
NHSC’s parent organization American Institutes for Research is sponsoring a student employee through Washington DC’s Mayor’s Youth Leadership Institute (MYLI), a community program that provides learning and growth opportunities to DC youth. Daisha Hale, a 2011 graduate from Benjamin Banneker Academic Senior High School in Washington, DC, is working at AIR and last week published a post for the National High School Center’s High School Matters blog describing her experience with the MYLI.
West Wind is serving on the High School Matters blog editorial team and we are looking for high school students to contribute to the blog. West Wind also has been including local students and youth in our own programming, as well, such as our employment of students with disabilities through the local schools’ Transitions Service Center, serving as a mentor and Bronze Sponsor for Iowa City’s Fast Trac program, showcasing artwork by Tate High School students in our office gallery, and by inviting student contributors to our blog.
Can your organization provide community-based programs for students? Do you have structures—publications, meetings, etc.—where student voice should be present?