The Immortal Life of Henrietta Lacks

               I must admit, I enjoyed this week’s reading of Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” very much.  With my busy schedule I was thinking “Oh no, not another 300 page book,” yet this one went quick and I found it entertaining.  I had heard of this book from my sister-in-law who had suggested reading it this summer.   I feel like I could write pages and pages in response to this book, with inquires, criticisms, and intrigues… so I will try to keep my thoughts here brief and concise. 

                While reading this book, I just couldn’t help but feeling “bad” about what happened.  Of course I felt “bad” for the Lacks family, and all the suffering that the scientific experimentation caused.  I felt “bad” for the doctors; for I feel that it was not their intention to cause problems.  I even felt “bad” for Skloot as she tried to help the Lacks Family and piece this puzzle together.  It is one of those situations where I can see both sides… and anyway you look at it, the outcomes are unfortunate.  I can’t imagine being part of the Lacks Family, not knowing what is going on, confused by doctors, dealing with their own grief, and spiraling downward.  The portion of the book where Dr. Hsu went back to Henrietta’s descendents to draw blood for further testing really stuck with me.  Can you imagine being Deborah, never knowing your mother- but knowing that a disease killed her; not knowing if you have the same disease and being contacted by doctors after all of these years.  Then to think the family thought that the blood tests were to see if they had cancer!  Talk about a miscommunication.  And then, waiting, and waiting, and not hearing from the doctors… Basically, that seems like torture. 

                Yes, the HeLa cells have helped many, many people through cancer research, but at what cost?  It seems that Henrietta’s “immortality” caused huge strain on the family.  The members of the Lacks family fell apart, and really never recovered.  You can’t put weighted measure on someone’s life- but in some respect I can’t help but think- was it worth it?  Perhaps some of my hesitation comes from my position in life.  I am not a doctor, not a cancer patient, not a member of the Lacks family.  It is obvious that Henrietta’s immediate family was deeply affected by the situation.  But will her grandchildren be as affected?  Her great grandchildren?  At some point, will the direct familial connection to Henrietta Lacks be lost?  After reading the book, I would have really enjoyed seeing Rebecca Skloot when she came to campus.  The amount of trust that was needed from the family to write this book is incredible.  I feel that Skloot did an excellent job of portraying both sides of the situation and including history, emotion, family dynamic, and science discovery.  I would be curious to hear her answer to the question- was it worth it?  There is no going back now and what’s done is done.  And at the time, it didn’t seem like such a big deal.  Kudos to Skloot for her afterward… I thought it summed up the book nicely and brought the issue into a bigger context.  I’m very interested to hear our class discussion concerning the book!

Building Collections, providing services, mediating consumption

              Right away in Elmborg’s article, “Teaching at the Desk: Toward a Reference Pedagogy,” the author relates teaching at a reference desk to teaching writing—it is more teaching the process, not the end product.  Obviously, being a teacher myself, I completely agree with this conclusion.  While students in academic libraries may want librarians to search and find materials for them, it does not help the student learn how to do this for the future.  As I was reading the article and the comparisons to the teaching of writing, I kept thinking of quotes that I have learned in my professional development by Lucy Calkins about the teaching of writing.  Our district has made a push as of late to use her methods to teach writing.  Then- imagine my surprise when I am reading along in this article and the author actually QUOTES Lucy Calkins!  I was shocked, excited, and a little amazed at myself that I made the same connection as the author.  I thought this article was well thought out, to the point, and made a valid point for the need of “teaching” at a reference desk in academic libraries.

                Morris’s “Toward a User-Centered Information Service” took me back a little bit to the overwhelmed-edness I felt last week concerning information.  I started reading this article and all I could think was, “Oh no, more thinking about information.”  I don’t think I have ever  thought so much about information. Yet, as I read along, I found this article easier to grasp.  The constructivist model makes sense to me: “information is not something objective and external, but as something constructed by the user.  Information does not exist in the abstract- it needs to be interpreted.”   I liked Delvin’s “situation-gap-use” metaphor.  That is very much the same mentality we have in teaching.  If someone is not learning, there is a gap in their knowledge- and it is our job to then work to fill that gap.  It makes sense that this metaphor for information also works with learning.  I think ideas in this article also relate to Elmborg’s article, with respect that information needs to be used by the user-not just the librarian.  I did question Morris’ point when she said “one reason why users seem to be generally satisfied with what they find is that, based on cumulative experience with research and with libraries, they have come to expect relatively little.”  Is she referencing “expecting little” from the information?  Or from the librarian?  It seems unclear, and each scenario is suggesting completely different things.  

                Two positive thoughts on Wiegand’s “Mom and Me: A Difference in Information Values…”  (1) Loved that the article was short, to the point, and used an excellent, relatable example to make his point.  People do have different personal information economies that influence the way they look at information and make decisions (2) His mom reminded me a lot of my own grandmother and her decision making antics.  Again, great example that made me smile.

                Opposed to the previous article we read concerning archives, I found Yakel’s article “Museuems, Management, Media, and Memory: Lessons from the Enola Gay Exhibition” quite informative and interesting.  I immediately saw the controversy concerning the exhibition, and I do not know which side I necessarily agree with.  I began to think of museums in general, and realized that I never thought there could be controversy concerning them.  In my mind, museum exhibits are an informative representation of history, science, literature, or a combination of the three.  I think back to the Milwaukee Public Museum (where I spent a lot of time during my youth) and the exhibits they offered.   The huge T-Rex, the Streets of Old Milwaukee, the Native American Pow-Wow, the shrunken heads, the howler monkey in the rainforest… they all seem pretty cut and dry.  However, after reading this article, it makes me wonder—how subjective were the curators when they made these exhibits?  Now granted, these exhibits do not pose the same history/memory relevance as the Enola Gay, but still, they are a representation that a person put together.  To quote Yakel- “Who has the authority to interpret history to the public- indeed who “owns” history?”  I also liked her point that “artifacts do not speak for themselves.”  I feel some artifacts can stand alone and have meaning to patrons, but only if they have prior background knowledge on the topics.  Also she mentions that museums, like libraries, are not meant to represent inclusiveness.   That is very important to remember when you are viewing an exhibition.  One lasting thought – after reading this article, I have more appreciation for museums and their curators.  I love museums—I mean, really love them.  But never before did I actually stop and think about all of the work that goes into making meaningful exhibits for the public.  Next time I am back in Milwaukee, I am going to stop in the museum and revisit the memories of my youth and work my way through the museum with a more appreciative and critical eye.

Oh no... everything is miscellaneous

               I don’t think this was a good week for me to read “Everything Is Miscellaneous.”  I consider myself a pretty organized person and like order and structure in my life.  I would like to say both my classroom and my apartment are organized with some logic behind them.  In fact, I would even go as far as to say that in some aspects, I pride myself on my organization.  So, in my hectic, busy schedule (full time teaching, carnival planning, grad school attending, paper writing, grant writing, cleaning for family coming into town next weekend) I did not need a jolt in the organization of the way my brain functions.  But alas, that is what happened when I read this book.

                I began to second guess all different types of organization in my life, and began to wonder, “Why is this organized this way?”  “Is this the best way to do it, or is it just because it has always been done this way?”  I looked at my files at school.  I looked at the books in my classroom.  I looked at the “organized” piles of mail and stuff on my kitchen table.  I looked in the refrigerator.  I even looked at my files on my computer, and the clothes hanging in my closet.  I feel like this book sort of drove me nuts.  It brought up interesting points, and had many interesting examples… but as I read, I couldn’t help but relate it to my own life (which I guess means I thought it was a good book, right?). 

                I suppose I just can’t grasp the fact that ‘everything is miscellaneous.’  I want there to be a right way to do things, and I want to do it that way.  While reading this book, it became quite clear that information is lumped, classified, split, grouped many different ways… some more popular than others.  Maybe if I would have read this book during the summer I wouldn’t feel so overwhelmed and defeated.  I might have read it and thought, “Interesting… to an extent, everything is miscellaneous.”  But I didn’t leisurely read it during the summer.  I powered through it during one of the busiest times of the school year.   Instead of a quizitive response to the book, I was left with more of a “WHAT???  Everything is miscellaneous??  If this is true… then what is the point in even trying to straighten it up?  It’s a lost cause!”   I’ll be interested to hear what other people have to say about the book tonight in class.  Maybe I just completely over analyzed it and added undue stress to myself.  Or maybe this is just a realization that I might be a tad anal retentive…

Thinking about and Organizing Information

             When I finished reading Buckland’s “Information as a Thing,”  I really only had one thought: What was the point of that article?  In my opinion the article did nothing but state the obvious (information is meant to be informative, anything can be viewed as information, information is situational, copies of information are never as good as the original).  I didn’t disagree with anything in the article, but moreover thought: why does this need to be stated?  In fact, I feel like Buckland even got at that point himself when he said: “If anything is, or might be, informative, then everything is, or might well be, informational.  Calling something information does little or nothing to define it.   If everything is information, then being information is nothing special.”  Then why write an article about it??  Was the purpose of the article to prove that information is nothing special?  From the abstract at the beginning, I do not think that is Buckland’s main point; however, when I read this paragraph on the sixth page, a large part of me wanted to put the article down and not pick it up.  Even the summary is ambiguous and does not offer the reader too much new information.

                Opposed to the previous article, I found Olson’s “The Power to Name: Representation in Library Catalogs” to be surprisingly interesting and informative.  I am currently taking LIS 551: Organization of Information and found the first portion of the article very similar to class.  These topics may be boring or hard to understand to some, but  being in that class helped me understand the differences between Cutter’s classification, Library of Congress Subject Headings, and the Dewey Decimal System.  (Although I admit, if I was not in 551, this article would have been overwhelming, confusing, hard to follow and most likely unenjoyable to read).  I thought that the article was just going to describe these different methods of classification, and give an objective view of all of them by discussing positives and negatives with each system.   Imagine my surprise when all of a sudden a feminist and culturalist viewpoint comes forth in the article.  I thought the examples given were perfect examples of the problems that can happen with classification (over generalizations, random classifications, important facets of the works being left out).  Even more interesting to read, was Olson’s interpretation of potential solutions to these organizational issues.  In 551 we often discuss the oddities (yet norms) of classification systems.  Olson’s closing remarks claim that although it would be time consuming and monetarily costly- a change in classification systems needs to be made to address issues of inequality.   It is a known fact that libraries are designed to provide information to the patrons, and catalogs should be constructed for the “convenience of the public it serves.”  However, I feel like this is easier said than done.  What is convenient to one, is not necessarily convenient to another… which I suppose leads back to the general categorization, and the problems that come along with it. 

Yours, Mine, Ours

After reading Byrne’s article, “Access to Online Local Government Public Records,”  I had only one major thought running through my mind… why are these public records online in the first place?  If there is this concern about the information, then why is it made public in the first place?  Yes, the public records need to be stored, and it makes sense to store them electronically- but why do they have to make their way to the internet?  Who makes these decisions?   It seems apparent from the article that different states have different ways of publishing the public records, but why are these methods not standardized amongst the country?  And another thought… how are public records deleted?  If I am living in Wisconsin, and my public record shows my address and phone number, what would happen if I would move to California?  Who is overseeing the public records to know that my Wisconsin public record who need to be deleted and a new California public record created?  Is there a chance that the public records could be wrong?  Lots of questions I know, but something about the “public record paradox” just doesn’t add up for me.  Is there any beneficial reason for making these public records public via the Internet?

In comparing Byrne’s article with Charo’s “Body of Research- Ownership and Use of Human Tissue,”  I realized that it seems that “property”, whether it be information, tissues, cells, bodies… does not necessarily belong to us as people.  It seems like a simple concept: my phone number is my phone number.  I can give it to whomever I want… but then others can get it if they really want it to.  My bodily tissue is my bodily tissue.  I can give it to whomever I want… but then others can get it if they really want it.  I found it interesting in the article that it stated that there did not need to be consent for research that would pose minimal risks to subjects.  Who gets to decide what “minimal risk to subjects” is?  Again, this just seems a little fishy- and it shouldn’t!  We are talking about our own bodies here!  Apparently “property,” even if we own it- is not entirely ours.

I will admit that I am not up to date on issues of Stem Cell Research.  I know the basis, and that it can be a widely debated hot topic.  Streiffer’s article, “Informed Consent and Federal Funding for Stem Cell Research” made me slightly concerned.  Why are these consent forms so sneaky and cryptic?  Maybe I am wrong, but I feel as though researchers would still be able to get the cells they need if they offered a price for them.  People will do some pretty outrageous things for money… think about the amount of people that cell blood, plasma, or sperm!  Is the reason that researchers want to “trick” people so they will have a diverse cross section of cells to work with?  Again, I just don’t see the benefit of taking cells in this fashion.  These consent forms remind me of the agreements you agree to when you are uploading photos to photo services, or when you buy music online.  The agreements are very long and rarely do I read them all the way through and through.  But, I guess that is what the consent forms are playing on.  I would be interested to see if the donation of cells was clearly stated on the consent form- would people allow their cells to be used?  My guess would be yes.

Market Models and The Middle Layer

I am glad that we are going to be discussing Pawley’s article, “Beyond Market Models and Resistance: Organizations as a Middle Layer in the History of Reading,” because I am not sure I fully understand it.  I understand the distinction between the two models and what each is suggesting… but I feel there is a disconnect between the first descriptions of the models and the rest of the article.  Which is why I purpose -- I don’t understand it.  I think I am missing the relation between the two models and the “organization” that Pawley describes as a middle layer.  Is the “organization” the library?  Pawley discusses that we want to bridge the gap between individual and society… but what is the “organization” that is bridging it?  Then, I think I understand the final section concerning reading, writing, and control.  Many of these topics seem to be ones we have discussed through previous articles.  Somewhere in the midsection of the article, I feel like I lose focus of what Pawley is describing.  As I was reading the last section, I couldn’t help but wonder… do we still have literary elite?  Is there a group that feels they are better than other literate people that decide what constitutes quality literature? I guess some could argue that the literary elite would be educated individuals- perhaps at the collegiate level… but I don’t really know. 

        Another area of slight confusion for me was the metaphor of the “reader as a poacher.”  Is this metaphor suggesting that readers are stealing the ideas of others who wrote them (writers) and filling their heads with this information, opposed to creating their own?  If so, then why would a writer ever write anything down?  Isn’t the point of writing to share your ideas with others?  If that is seen as “poaching,” then I suppose I don’t see why anyone would publish anything.  Again… am I missing the metaphor?  I will be interested to hear others opinions on these issues in hopes of understanding them a little better.

The Company of Readers

                So much to talk about regarding “The Company of Readers,” so little time!  I am not even joking here.  I think we could easily spend 4 or 5 class periods discussing aspects of this chapter.   There was a lot of information, and specifically, a lot of information that I found extremely relevant to my own life.   One of the most important aspects of my job is to teach children how to read.  In fact, that is one of the main reasons I love teaching first grade.  When students enter the school year, they do not know how to read (or at least fluently and proficiently); when they leave most of them are little reading machines.  Yes, it is a long process, and yes, it can be quite frustrating.  But this aspect of teaching may be one of the most rewarding. 

                The chapter discussed how importantly it is for children to enjoy reading.  Every day at school I try to make reading that much more enjoyable for students.  I read aloud to students, they read books, they look at books, we watch animated versions of books, we act out puppets with books, we write our own books using well known characters.  That is exactly what kindergarten and first grade is: exposing children to books and making them want to read.  Not to toot my own horn, but I am pretty much a master at read-alouds.  It is fun to see that when students go to library hour, they often choose books that I have read to the class.  But getting kids excited about reading is really only half the battle, teaching them the nuts and bolts of how to read is another whole beast.

                In this chapter, in section 1.6 “Reading as a Transaction,” they discuss the different models of reading—the “outside-in” model and the “inside-out” model.  To become proficient readers in school, students need a mix of both of these two models.  As in the “outside-in” model, readers do need to be able to decode the physical words on the page.  They need to understand sounds, blends, general phonemic awareness, and quick recall of high frequency words.  However, this alone does not make a proficient reader.  A large part of reading comes from the “inside-out” model where readers make connections to their everyday life or to books they have already read.  The words on the page need to make sense in a context for beginning readers, or they are not going to retain the message of the print.  This is the comprehension piece of reading.  The chapter does not necessarily state that these models do not co-exist, but I am here to tell you that they NEED to co-exist, if they don’t-  the beginning reader is going to have major gaps in their learning.  

                Perhaps the reason I found this chapter so enjoyable to read is because most of it deals specifically with my daily profession (which I happen to love as well).  But oodles of other topics of discussion caught my attention as well.  This entry is getting long enough, but I wanted to point out just a few other tidbits from the chapter that I found intriguing:

·         Can you imagine a time when libraries were trying to curb the amount of fiction being circulated among patrons?  Not ordering new books until 6 months after their publication?  Isn’t this pretty much the basis of an anti-library?  Comparing reading fiction to cholera?  A little extreme to anyone else?

·         94% of Canadians read for pleasure on a daily basis?  I am all for pleasure reading, but this statistic seems rather high.  I LOVE pleasure reading, yet I am also a pretty busy person and would not say I do it on a daily basis.  Is this suggesting Canadians have no life?  (Just kidding… but seriously, doesn’t this seem high to anyone else?)

·         With the stereotype of readers being a “bookworm” I did find it interesting how they characterized readers as highly social people.  It makes sense when you think about all reading leads to… but then where did the “bookworm” image originate?

·         Reflections on reading: what was the first book you remember reading as a child?  I remember reading “Some things Go Together” with my mom, having my older brother read “Treasure Island” to me, and “Pat the Bunny.”  My dad used to make up bedtime stories and I can remember writing them in school.  I also remember my brother and I used to pretend to read the encyclopedia.  We used to make up what the entries were about based on the pictures.  Looking back… that is slightly bizarre.