Unsurprisingly, I was completely enthralled by the Immortal Life of Henrietta Lacks. With my background in social work and interest in how libraries and information agencies can be improved as a resource for disadvantaged members of society, this was right up my alley. Side note: I can be a very emotional reader, so if anyone spotted me reading this with a box of Kleenex by my side, that wasn’t because I had a cold. This book had me sobbing many times!
My favorite part though was actually a happier section, Chapter 32, where Christoph Langauer has Rebecca, Deborah and Zakariyya come visit his lab at Johns Hopkins’ so they can see Henrietta’s cells. He is so patient and kind to them, he even spends half an hour drawing diagrams of cells and explaining them. It s also there that Deborah finds out that although she inherited many things from her mother, such as her hair color, she didn’t inherit the cancer, because that was caused by an outside agent (HPV). She is so relieved to find this out, but it got me kind of mad too. I mean, how easy would it have been to have told her that a long time ago, so she didn’t have to worry all the years?
I also think the issue of trust is important. It took Deborah a long time to even take Rebecca’s phone calls, but thankfully Rebecca was persistent. I think it helped that Rebecca wasn’t trying to get anything out of them, besides information, and that only when they felt ready to give it. It really helped that she gave them so much of her time and came to family events and church. I think that helped them get to know her and see she wasn’t one of the bad guys trying to scam them. It will be really good for so many people to read this book and see these people’s backgrounds. I hope it helps us do less “judging a book by its cover” so to speak… for example, getting the background on how abusive and chaotic the Lacks’ children’s childhoods was, I really hope that will increase people’s empathy. Otherwise, people are often liable to see others who are in prison or on Social Security as just bad people or lazy people, but they don’t get the full story. The thing is, I think there is a lack of trust in many communities, especially between the haves and the have-nots. The haves might see the have-nots as being leeches or “working the system” and the have-nots may view the haves as begrudging or looking for ways to stop services. It makes me think how can libraries and information help bridge this gap. This is part of what I was trying to do in my Collection Development Exercise (sorry to keep bringing it up, but I must not have explained it very well considering the grade I got). Since I was including music and literature from different backgrounds, I was hoping patrons would see it as they looked at the materials they were already interested in and then check it out as well.
Another issue that the book raised was of access: although Henrietta’s cells have helped create wonderful advances in science and health, not everyone has access to these advances, because we do not have universal health care. As is stated several times in the book and on the book’s website, many of the Lacks’ children and family do not have any health insurance. That is crazy considering how they could be billionaires if they got payment for Henrietta’s cells. I’m someone who believes certain things is a right for everyone, including safety, nutrition and healthcare. But unfortunately this is not reality, and instead, millions of Americans have no health care. As the book also points out, whether or not someone has health care, they don’t usually even know all their rights or what’s being done with parts of their body that is sliced or sucked out of them. I wonder how can we get more basic information passed on to the general public? It seems most people would not want to know all the details, but at least have some more information. It would be nice if Doctors could spend more time with each of their patients to explain things better to them. As it stands now, it seems it is often up to the patients to seek out information on their own, which obviously some are much more capable of doing than others. It seems like some patients needs their own personal Rebecca Skloot and Christoph Langauer to help them understand the process and navigate the system. And maybe that’s not too much to ask. Perhaps if we a society put more emphasis on treating every human being with respect and dignity, our society would be less messed up and we wouldn’t have to be building so many prisons…instead we could use that money to build more libraries!
There is so much more I could say about this great piece of work but I’ll just end it with saying I’m glad the author also included background in to a lot of the scientists’ lives to help give us a well-rounded view. I think in general there is not necessarily clear-cut “good guys” and “bad guys”, and usually people are just doing the best they can at the time. So many of these scientists weren’t trying to take something from the Lacks’ on purpose, but through circumstance they ended up doing just that. The thing is, now that all this has come to light, it would be nice if Johns Hopkins could apologize (which in their letter they said they would not do) and give some money back to the Lacks. Even if that doesn’t happen though, hopefully this book will enlighten people for the future and help others see how valuable information and education are!
Monday, October 25, 2010
Wednesday, October 20, 2010
Week 7 Response
“Mom and me: A Difference in Information Values” reinforced many of my beliefs about information. The author had an idea about what was “right” for his mother, and I think he overstepped his bounds a little bit by trying to get her to see information in his way. I understand that it came from a “good place”, in that he thought he was helping his mom, but the reality is we might not know what is best for others. Sometimes we say something was done in the name of being good for the person but it is really causing them harm. One thing it made me think of is my cousin who is a student at the University of Chicago. He does tutoring for some low-income kids in the area. He told me that he was frustrated because he thought the kids’ manner of speaking was “bad”, and he was even more frustrated because the tutoring advisor also spoke in the same way. He thought she should set a “better example” by using “proper English”. I don’t agree. I think if she wants to speak like a middle-class white person that’s fine, or if she wants to speak in the manner in which she was raised, that is fine too. None of them is better than the other, but I fear that some people who are unfamiliar with certain modes of speech, in particular African American “slang”, see it as ignorant and uneducated. For some people, speaking in slang is going to be necessary and inevitable in their lives, and we shouldn’t be trying to erase that.
This belief that we need to set a “good example” pervades the institution of librarianship as well. For example, librarians may choose to purchase less “urban lit” (like Donald Goines) because they don’t think it’s “real” literature. But they don’t know. Maybe it’s not their experience, but that does not mean it is wrong.
Going back to the article, I was glad that his mom ultimately picked the car that was right for her and I was even more happy that the author saw that and learned from it. He doesn’t inhabit his mom’s world. He can definitely offer things to her from his world, but like he says on the last page “the concept of a personal information economy does not prioritize one human being’s value system over another”. This is part of the reason that I put those hip-hop CDs in to my economics collection development. The music is about a side of economics that some people may never see and not understand, but for other people, that’s a newscast from their world. Actually, I wish I had included the movie “Hustle and Flow” in the collection too, for the same reasons. If any of you haven’t seen it, I would highly recommend it.
I really like how he puts a call to action to his colleagues at the Association for Library and Information Studies Education and the ALA at the end of the article to expand their horizons and out the concept of a personal information economy in to practice. Of course, my sense is many people who have read this article already had an interest in this. What is more difficult is reaching the librarians who don’t care that much and “just want to do their job”. Its always hard to break through to the people who are fine with the status quo. But hopefully the passion from the librarians who have it will rub off on the ones who don’t.
I just want to comment briefly on the article “Teaching at the Desk”. When I first got hired at the public library my supervisor explained to me how we can turn patron questions in to “teachable moments” so they can have more autonomy navigating our resources. For example, if someone comes up asking me if we have a certain book in, depending on if its busy or not, I might take that moment to show them how to do a quick search, while at the same time stressing that I (or the reference librarian) is always happy to do the search for them too. Many patrons are pleasantly surprised upon learning a few simple tools to help them find what their looking for. I think it’s a bit different in an academic library, because there the students should be learning how to use the system for themselves more.
I appreciated that this article talked about the reference’s desk need to be familiar with different learning styles. I think this is in a similar vein as the “Mom and Me” article in that they both acknowledge when it comes to information seeking “one-size-fits-all” is not the best model. I especially liked the different types of questions the reference librarian can use to help patrons “move intellectually through the challenge of thinking through a problem” (460). It reminds me of some of the questions I’ve heard asked at the reference desk, including “I’m looking for this book with an orange cover” (that turned out to be “Girl with the Dragon Tattoo”).
In closing, I want to give a shout-out to the reference librarians and all the staff at the Sequoya public library, as they always handle patron questions with grace and kindness. It's great to get to work with people who I want to emulate!
This belief that we need to set a “good example” pervades the institution of librarianship as well. For example, librarians may choose to purchase less “urban lit” (like Donald Goines) because they don’t think it’s “real” literature. But they don’t know. Maybe it’s not their experience, but that does not mean it is wrong.
Going back to the article, I was glad that his mom ultimately picked the car that was right for her and I was even more happy that the author saw that and learned from it. He doesn’t inhabit his mom’s world. He can definitely offer things to her from his world, but like he says on the last page “the concept of a personal information economy does not prioritize one human being’s value system over another”. This is part of the reason that I put those hip-hop CDs in to my economics collection development. The music is about a side of economics that some people may never see and not understand, but for other people, that’s a newscast from their world. Actually, I wish I had included the movie “Hustle and Flow” in the collection too, for the same reasons. If any of you haven’t seen it, I would highly recommend it.
I really like how he puts a call to action to his colleagues at the Association for Library and Information Studies Education and the ALA at the end of the article to expand their horizons and out the concept of a personal information economy in to practice. Of course, my sense is many people who have read this article already had an interest in this. What is more difficult is reaching the librarians who don’t care that much and “just want to do their job”. Its always hard to break through to the people who are fine with the status quo. But hopefully the passion from the librarians who have it will rub off on the ones who don’t.
I just want to comment briefly on the article “Teaching at the Desk”. When I first got hired at the public library my supervisor explained to me how we can turn patron questions in to “teachable moments” so they can have more autonomy navigating our resources. For example, if someone comes up asking me if we have a certain book in, depending on if its busy or not, I might take that moment to show them how to do a quick search, while at the same time stressing that I (or the reference librarian) is always happy to do the search for them too. Many patrons are pleasantly surprised upon learning a few simple tools to help them find what their looking for. I think it’s a bit different in an academic library, because there the students should be learning how to use the system for themselves more.
I appreciated that this article talked about the reference’s desk need to be familiar with different learning styles. I think this is in a similar vein as the “Mom and Me” article in that they both acknowledge when it comes to information seeking “one-size-fits-all” is not the best model. I especially liked the different types of questions the reference librarian can use to help patrons “move intellectually through the challenge of thinking through a problem” (460). It reminds me of some of the questions I’ve heard asked at the reference desk, including “I’m looking for this book with an orange cover” (that turned out to be “Girl with the Dragon Tattoo”).
In closing, I want to give a shout-out to the reference librarians and all the staff at the Sequoya public library, as they always handle patron questions with grace and kindness. It's great to get to work with people who I want to emulate!
Tuesday, October 12, 2010
week 6 reading response
I'm just going to respond to "The Power to Name" for this week. It had a lot in it and I don't think I will even get to cover all my thoughts on it. First of all, I can see how a certain amount of controlled vocabulary would be necessary in order to streamline searches. However, I think the problem is that too few people think “outside the box” and don’t think to add additional tags, subjects or names to pieces of information. I agree with the article when it talked about how our labels only appeared neutral; this also reminded me of our class discussion on racial neutrality. We don’t live in a gender/racial/etc neutral society, so we shouldn’t pretend that our labels are such. Although Cutter created his cataloging system almost 150 years ago, his “presumption of universality” (5) is still relevant today. We can easily see how even 50 years ago many groups were being excluded from participation in mainstream society- racial minorities, GLBT, people with disabilities. In fact, because these groups have made such visible progress in gains such as civil rights, I think we have suffer from a tendency to see issues of exclusion and discrimination as no longer significant.
As librarians, I think we need to keep examining our self-censorship, i.e. continue to question ourselves as to why we are referring to something or searching for something in that particular way. I liked some of the author’s suggestions on ways to make the catalogue more accessible, especially typing in one word and having the search engine automatically look at alternate spellings as well (23). The idea for having users create their own links is also good, but I fear that many marginalized users would not be able to make use of this.
The article also brought to mind the displays libraries choose to have. At the public library where I work, we have several displays that change every month. I have been asking the reference librarians how they choose their subject material. Some of it is seasonal (like books on camping during August) but overall there is a wide subject range. The librarians said that their main focus was to put up displays that would appeal to patrons that we have visiting our location. I asked if they were ever worried about offending any patrons with display subjects. They said no, because this is Madison, and it’s hard to offend people here. On the flip side, they also said that they feel it is a part of their job to make patrons question their own assumptions. So it seems like that it is a delicate balance: providing materials you believe the patron would already want, while also providing or displaying other materials that might make them uncomfortable. Hmmm… I also discuss this a bit more in my Collection Development assignment.
I think a good cataloging system will be self-critical, and also have input from the widest selection of people/groups possible. Catalogers should definietly be hitting the streets and asking people "how would you like to be referred to? What issues, attributes and problems do you believe are most connected with your identity?" That would keep it real and accessible for a lot more of us.
As librarians, I think we need to keep examining our self-censorship, i.e. continue to question ourselves as to why we are referring to something or searching for something in that particular way. I liked some of the author’s suggestions on ways to make the catalogue more accessible, especially typing in one word and having the search engine automatically look at alternate spellings as well (23). The idea for having users create their own links is also good, but I fear that many marginalized users would not be able to make use of this.
The article also brought to mind the displays libraries choose to have. At the public library where I work, we have several displays that change every month. I have been asking the reference librarians how they choose their subject material. Some of it is seasonal (like books on camping during August) but overall there is a wide subject range. The librarians said that their main focus was to put up displays that would appeal to patrons that we have visiting our location. I asked if they were ever worried about offending any patrons with display subjects. They said no, because this is Madison, and it’s hard to offend people here. On the flip side, they also said that they feel it is a part of their job to make patrons question their own assumptions. So it seems like that it is a delicate balance: providing materials you believe the patron would already want, while also providing or displaying other materials that might make them uncomfortable. Hmmm… I also discuss this a bit more in my Collection Development assignment.
I think a good cataloging system will be self-critical, and also have input from the widest selection of people/groups possible. Catalogers should definietly be hitting the streets and asking people "how would you like to be referred to? What issues, attributes and problems do you believe are most connected with your identity?" That would keep it real and accessible for a lot more of us.
Tuesday, October 5, 2010
Week 5 reading response
Byrne’s piece on public records brought up several things for me. First, it reminded me I have varied experience helping patrons access public records in my job at a public library. Several times a patron has tried to find an old classmate or teacher, and we have usually had limited success at locating them. The web page usually wants to start charging them to view personal details. I have never found all that info he was describing, their marriage certificates and so on. I feel good if I can pull up a phone number that isn’t disconnected!
I also have a concern about public records visibility, because I don’t think many are aware of how limited their scope is. For example, court records and offender registries do not capture all people who have ever committed such crimes, instead they are just the ones that have been caught, prosecuted and convicted. Byrne mentions how convicted criminals have lost some of their privacy rights (3). It is important to realize that the people convicted of crimes in the US are much more likely to be poor and minorities. So when we start to CCAP all future employees, and exclude those that have felony convictions, for instance, let’s not fool ourselves that we are now left with a pool of people who have never committed a felony. Nope, it simply means we are left with a group of people, some which never have committed felonies, but others that have but have never been caught or got their charges dropped. The problem is many people don’t realize this or don’t care. This is one reason why it’s so hard for convicted felons to get back on their feet’ they keep getting excluded from being put in to housing and getting hired from jobs because the people making the decisions think they are doing something to keep their community safe. They need to realize there is plenty of people who have committed crimes who just never been caught. I don’t know what the total solution is to this problem, but I would definitely like to see awareness raised on this issue. As a librarian, I would have no problem sharing this with patrons. It’s just another example of how limited information we can get using the web and/or public records. They do not tell the whole story.
I disagree with Byrne when he says convicted criminals are the ones ultimately responsible for having their information public (3). I suppose he means that in breaking the law, they forfeited those rights. As above, I fear this is a very narrow view. There are some people who have been wrongly convicted. And many who are never convicted because of wealth, status, race or luck- how does he reconcile this?
Byrne’s article demonstrates that there is a lot of personal information about us “out there”. It also shows how disorganized our country’s approach is to protecting personal information. I got nervous when I read about the type of redaction that only happens if individuals request it be done. I believe this is putting too much of the burden on the individual. As Byrne listed all the things that may be accessed about us, from home address to social security number, I kept thinking that only certain people will know that this information is out there and have the time and money to track it down. It is another example to me of the gulf between those who know how to navigate the information superhighway and those who don’t.
The two articles addressing informed consent and using our body parts also made it clear that even the people donating their stem cells, organs, etc often don’t understand exactly what they are used for. Streiffer’s article in particular drilled this point home, by pointing out how confusing, misleading and even downright untruthful the consent forms for stem cells can be. As librarians, we can point out ambiguous wording to both our patrons and those writing things like consent forms. Reading these articles is important too because they should remind us that there are many forms and documents that patrons will be accessing that they don’t completely understand or are worded unclearly. By us being aware of that, we will be better able to help our patrons make good decisions.
I also have a concern about public records visibility, because I don’t think many are aware of how limited their scope is. For example, court records and offender registries do not capture all people who have ever committed such crimes, instead they are just the ones that have been caught, prosecuted and convicted. Byrne mentions how convicted criminals have lost some of their privacy rights (3). It is important to realize that the people convicted of crimes in the US are much more likely to be poor and minorities. So when we start to CCAP all future employees, and exclude those that have felony convictions, for instance, let’s not fool ourselves that we are now left with a pool of people who have never committed a felony. Nope, it simply means we are left with a group of people, some which never have committed felonies, but others that have but have never been caught or got their charges dropped. The problem is many people don’t realize this or don’t care. This is one reason why it’s so hard for convicted felons to get back on their feet’ they keep getting excluded from being put in to housing and getting hired from jobs because the people making the decisions think they are doing something to keep their community safe. They need to realize there is plenty of people who have committed crimes who just never been caught. I don’t know what the total solution is to this problem, but I would definitely like to see awareness raised on this issue. As a librarian, I would have no problem sharing this with patrons. It’s just another example of how limited information we can get using the web and/or public records. They do not tell the whole story.
I disagree with Byrne when he says convicted criminals are the ones ultimately responsible for having their information public (3). I suppose he means that in breaking the law, they forfeited those rights. As above, I fear this is a very narrow view. There are some people who have been wrongly convicted. And many who are never convicted because of wealth, status, race or luck- how does he reconcile this?
Byrne’s article demonstrates that there is a lot of personal information about us “out there”. It also shows how disorganized our country’s approach is to protecting personal information. I got nervous when I read about the type of redaction that only happens if individuals request it be done. I believe this is putting too much of the burden on the individual. As Byrne listed all the things that may be accessed about us, from home address to social security number, I kept thinking that only certain people will know that this information is out there and have the time and money to track it down. It is another example to me of the gulf between those who know how to navigate the information superhighway and those who don’t.
The two articles addressing informed consent and using our body parts also made it clear that even the people donating their stem cells, organs, etc often don’t understand exactly what they are used for. Streiffer’s article in particular drilled this point home, by pointing out how confusing, misleading and even downright untruthful the consent forms for stem cells can be. As librarians, we can point out ambiguous wording to both our patrons and those writing things like consent forms. Reading these articles is important too because they should remind us that there are many forms and documents that patrons will be accessing that they don’t completely understand or are worded unclearly. By us being aware of that, we will be better able to help our patrons make good decisions.
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