Thursday, February 12th, 12:00-1:30 PM in the Ehrlicher Room (411 West Hall)
Join the Library Diversity Committee (LDC) next week for a lunchtime panel discussion of transgender-related topics. We will have three panelists: Denise Brogan-Kator, Managing Attorney of the Rainbow Law Center; Andre Wilson, former lead negotiator for the GEO (Graduate Employees’ Organization); and current SI student Anand Kalra. Pizza will be provided.  For more information on this topic, visit the Spectrum Center website at: http://spectrumcenter.umich.edu/gender.html

Although I was familiar with the general terminology and had an overview of transgender-related topics and, coincidentally, also had known Andre personally by another name and another gender, years ago, I left the presentation at 1:30 knowing indescribably more about the topic than when we arrived at the Ehrlicher Room at noon.  In fact, I felt the way one feels when one has seen a heart-rending, wonderfully executed movie–as if it had entered my mind to the extent that it had become a part of my own life experience.

Andre, Anand, and Denise had all had lived completely different lives, but as each panelist skillfully narrated his/her personal tale, the common thread of gender confusion and subsequent deep unhappiness was revealed.  I doubt that there was even one person in the room who was not affected by all three stories.  And, to my way of thinking, one could almost identify with each narrative, in that but for the vagaries of biology and/or the Fate or a Deity–whichever one believes in–the situation could have been one’s own.  I think I can say without hyperbole that it was a transformative presentation for many in the audience.

Fast-forwarding to the segment that involves libraries and librarians (apart from the sponsorship and site of the panel presentation), I can report that Andre mentioned that as a much-scorned, picked-on, bullied, and generally disliked youth, he spent lots of time hiding out in the school library; in fact, he never ate lunch, fearing to enter the hostile territory of the cafeteria, but spent the time putting plastic  covers on the books and helping the librarian.  Further, this librarian first exposed him to the possibility of a girl taking a boy’s role–through a book she left out about a woman who fought in the Civil War.   Andre also lauded the web site of the San Francisco Public Library for its open display of transsexual literature.  He stated that he almost literally owes his life to two thoughtful and caring librarians.   Andre suggested that librarians should continue to distribute such sorely needed information on this still extremely stigmatized and little understood topic and should leave such books around for vulnerable youth to discover (“Be a slob–leave your books lying around”).

http://sfpl4.sfpl.org/librarylocations/main/glc/transcending.htm

The web is wonderful.  I absolutely need it almost constantly for so many purposes these days.  There are online news, videos, googled information, wikipedia, reading/writing e-mail, blogging, social networking of all kinds (especially Facebooking and Twittering); however, this morning, all this goodness and functionality that had appeared as glittering stardust temporarily turned, figuratively, into very dirty, nasty dust for me.  I discovered that we had been web-scammed!  There, on my charge card bill was an extra fee from an unfamiliar source.  Although the fee was only $12, I have the habit of leaving no figure unchecked and no unknown charge unchallenged.

Speeding to the finish line of this sordid story, I can reveal that a popup box on the web site of Continental Airlines (no less!) had led the user to inadvertent and completely unintended membership in an outfit called RESERVATION REWARDS, which charged a monthly fee automatically for the privilege of whatever it proposed to offer in the way of discounts in hotels, air travel, movies, restaurants, etc.  All the innocent user had to do was click on the link thinking he/she was going to the next part of the airline site to make a legitimate reservation.

Googling helped me locate 30 screens of customer complaints about this company, most people not having noticed the extra charge until many months had gone by.   A quick call to the credit card company revealed that now we must obtain new credit cards with different numbers, a decided annoyance in most active people’s lives, entailing numerous explanatory phone calls and follow-up calls when the new cards come.  Another quick call ensued to the actual questionable company in question, where their automatic message declared that the caller could push “1” to quit membership (they were very prepared for a multitude of such requests, apparently) and a subsequent real live (I think) operator coolly and cheerfully offered to refund all fees (closing with “and is there anything else we can do for you today?”)

To me, the fascinating feature of this web-scam is that it is not illegal–immoral and unethical perhaps, but not illegal. Oh yes, it is slithery and slimy, but the clever way this con game is perpetrated enables it to survive unscathed, despite the blogs that cover many screens condemning it.

Our e-portfolio guru Karen Dickinson, by virtue of her patient and encouraging nature, gently inspired us (several colleagues from other parts of the university, in addition to me) to tease out several of our workplace accomplishments that we could sculpt and produce in readable form online. These turned out to be our artifacts. Looking back, I think that doing this activity was a bit of an accomplishment in itself, sometimes one that was a pleasant surprise, as we realized that what we had done was more important than it seemed at the time and in effect was well worth doing.

As Karen explained, the e-portfolio can be used for a horizontal change in jobs within the University, or  when applying for a new position elsewhere. It can also be put to use by a completely different person from the one who produced it, a new employee perhaps, or even an individual seeking to find out whether the particular position in question might be desirable and suitable for him/her to apply for.

I had learned directly from Laurita Thomas, Vice President, Human Resource Officer at UM, when I was a member of the Voices of the Staff: Benefits, Health and Wellness, that the University of Michigan expects to lose an inordinate number of employees in the next few years, both through retirement and moving to take positions at other institutions; therefore, it is hoped that the e-portfolios will serve as a basis for continuity of effort in many instances.

I don’t actually SWIM at the Y.  People in other lanes do, I am happy to report: they kick their feet, stick their heads under water and up again to breathe at appropriate and necessary intervals, splash a little or a lot, frequently make wonderfully mysterious underwater turns, and usually move back and forth from one end of the pool to the other quite rapidly.

I, on the other hand, am there in the pool for quite a different purpose.  I keep my head above water at all times, the better to see and observe everything that is happening or that might potentially happen.  My eyes are sharp, my ears are clear, my senses are alert.  If, as occasionally happens, there is a pleasant lifeguard who is willing to converse while guarding, we chat a bit now and then as I do my languorous breast stroke.  If not, I sort of float along in a casual way, eventually reaching the wall and gracefully turning in a semi-circle to head back the other way.  Because there are no cell phones to ring for my attention, no little domestic tasks to nag at me, no computer nor other writing materials readily available to tempt me, and because it is so relaxing in the tepid water and I have half an hour to spend, I actually find myself thinking of  things that I might act on later on.  These ideas seem to bubble up readily only when I am in the pool and in no other place.  If I were keeping track systematically (which I am not), I would say that I have probably emerged from the water with a count of at least two ideas per swim.  I would be foolish to delude myself into thinking that each and every one of these ideas actually developed into a viable plan.  Sometimes they diminish in value or even dissipate completely by the time I have showered and dressed for the day, but somehow they all seem like epiphanies during my time in the pool.

It took me a few months, but I finally found a (fatal?) flaw in Facebook.  Up to now I have been somewhat awestricken by how smoothly and efficiently the system functions.  Earlier today, however, a member of our UM Council for Disability Concerns pointed out that the Council’s Facebook site was closed to all except UM affiliates.  We are a welcoming group, eager to have community members join us, so obviously this could not stand; consequently, I volunteered immediately to look into the situation.

Here is what I discovered:  “Facebook does not allow you to change network-specific groups into global groups. In order for a group to be open to all networks, you must specify that its network is “Global” when you first create it. Unfortunately, if you currently have a group that you would like to make global, it will have to be recreated. We apologize for any inconvenience.”

There were 32 screens full of protests about this situation, but no indication of any promise to remedy it.

So starting all over and creating a group that is global, even with our small membership of 26 does not seem like something that would be a priority right now. There should be a better way.

The strength and weakness of what we consider traditional American medicine (more accurately referred to as allopathic medicine) is that it focuses on the aggregate rather than the individual, on macro-level patterns rather than micro. The reverse is largely true for homeopathy.

If one stops to really consider the methodology of the analysis that underlies allopathic medicine the significance of this becomes more clear. The researcher first identifies a question that is relevant to a substantial community. It has to be a substantial community because it isn’t possible to gather enough data to show statistical significance (if it exists) from a small data set. Therefore one is limited to asking questions that at least provide the potential for collecting statistically significant data.

Supporting this focus on large-scale scientific inquiry is funding, which goes primarily to support finding solutions to conditions that effect large numbers of people, even mildly, rather than those that effect small communities severely. For example, in the USA, you’d have to be sleeping under a rock to not be aware of the tremendous push in the last decade for research in breast cancer. The push has paid off, and breast cancer has shifted from being something terrifying and deadly to one of those where, if you have to get cancer, better to get one you have a fair chance of surviving — it is considered more of a chronic illness than a deadly disease.

That is now, ten or twenty years ago it was a completely different story. Meanwhile, ovarian cancer has always been one of the really bad diagnoses to get, but because it is comparatively rare (affecting fewer people) it is not as well funded, not as well researched, not as well diagnosed, and has stayed pretty much the same for prevalence and mortality for the past 20 years. (NOTE: This is a drastic oversimplification, and I am aware of that.) If you look at the stats comparing breast cancer to ovarian, even with the dramatic improvements in treatment of breast cancer and little improvement in treating ovarian, breast cancer still kills over twice as many women in the US as ovarian.

 

Cancer Mortality Trends, BrCA/OvCa
SEER data: http://seer.cancer.gov/faststats/selections.php

How devastating an illness is doesn’t drive funding (which drives both quantity and quality of research) — it is how many lives it touches. As long as it is still a significant problem, even if we’ve made huge strides in treatment, it will still drive funding. At some point, this can become a self-perpetuating cycle, the funding drives itself and we keep funding the same things because we have for so long.
Another aspect of what drives research questions is being able to clearly define the question. This is why conditions such as fibromyalgia, that are defined by nonspecific symptoms — symptoms shared with many other conditions — tend to be under-researched. The nature of the condition means it is ill-defined and difficult to research.

Bottomline, you don’t want to get either a rare disease or one that is vague or ill-defined. God forbid that you be an outlier. You know the whole standard distribution curve analysis, right? Bell curve? 95% of all people fall within 2 standard distributions from the mean. What about those 5% of people who don’t fall in the main part of the curve – the outliers? Well, we don’t really know what to do with them — that is not what the research looks at.

Does this mean that rare conditions don’t exist? Of course not. Does the presence of a non-specific symptom for which there is no clearcut or inexpensive differential diagnostic process mean that the symptom doesn’t exist or that it is purely hypochondriacal or psychosomatic? Of course not. But it does mean that it is sometimes it is, sometimes it isn’t, and as a healthcare provider it is often expensive and difficult to tell the difference. Does that mean nothing is wrong? That is isn’t REAL? Or that there is no solution? No way to make life even a little easier? Heck no to all of the above. It does mean that the burden of figuring out the problem, solutions, what helps, what doesn’t, all tends to lie largely on the person with the problem and their loved ones.

Another complicating situation is when the patient has multiple symptoms. They might be related, or they might not; it might be a syndrome, or it might be a series of otherwise unrelated problems that just happen to be present in the same person. Almost a coincidence. As a general rule, the medical literature and research process don’t do well with complicated situations. That makes it hard for the doctors, and it isn’t something that it easy to address in training. It is hard to understand the various bits and pieces as part of an overall pattern. It is not unusual to break it down into bits and pieces and look at them one at a time. This to manage the pain, that to control the inflammation, this lifestyle change to build strength and combat fatigue, this dietary change to help manage fatigue at certain times of day.

Often the only difference between being told a problem is in your head and not is the trust between you and your clinician. By this I mean you have a pre-existing relationship with your clinician which has generated trust on both sides. Even then, there is a fair chance they will say, “How much stress have you been under lately?” or “Why don’t you just make sure you’re eating well, exercising, drink lots of water, and make sure you are sleeping well – none of those late nights, ok? Come back if that doesn’t work.” Luckily, vague symptoms sometimes respond to vague solutions.

My personal perspective on this dynamic is a little off-center. I am trained in evidence-based healthcare research methodologies and consult in this area. I have a fair understanding of how the evidence stacks up, or doesn’t, the significance of insufficient evidence to support an important question, the importance of being able to assess the levels of evidence available and make decisions based on the best available evidence (even if it isn’t perfect). At the same time, I have the eccentric joy of being a member of a family just stuffed chock full of outliers. I know quite well what happens when what is wrong with you or your loved one doesn’t fit under the curve.

Alright, well, so our healthcare and research systems are not designed to deal with all situations. The evidence is incomplete, and that is part of our process – it is always incomplete, and always will be until we stop learning and asking questions. That means the decisions, services and accommodations based on that research share the same flaws. As long as we understand that, we can adapt the decisions, services, and accommodations; we can include the outliers, those who don’t fit under the curve. The danger, the very real danger comes in trusting the research completely without questioning, without acknowledging the inherent flaws and limitations of the evidence base.

Dr. Kafi Kumasi, of the Library and Information Science Department at Indiana University, recently spoke to a UM SI/MIX audience in an expansion of her dissertation “Seeing White in Black,” a narrative of 10 African-American participants (14-16 years old) in the Circle of Voices Book Club at the Monroe, Indiana, Public Library. The major points of the discussion involved Whiteness Theory and Double Consciousness Theory. Tension and challenges were employed as integral, constructive components of these racially-centered book discussions to tease out social and cultural emotions and impressions.  As the library “hook”, Dr. Kumasi quoted Audre Lord (librarian/poet/activist) who believed that librarianship should be part of social and cultural perspectives.
Using Dr. Kumasi’s thoughts and presentation as a jumping off point, it occurs to me to hypothesize that the Whiteness Theory may be used as an allegory for other ethnic marginalized groups. This theory encompasses the concept that whites hold privileges automatically that they don’t even realize they have and, further, that whites are not considered a race but are defined by their not being included in one of the marginalized races that are subordinate to them. This theory, by another name, can, I think, readily be applied to other groups as well. For example, we might propose: “Seeing Christianity in Judaism.” This would work perfectly well on several levels: sociologically, psychologically, and biblically.

The theory of double-consciousness is similarly fungible. As an example, the Germans and Italians of Jewish ancestry in their own countries often did not think of themselves primarily as Jews until they were so defined dictatorially by Hitler and Mussolini, respectively. They identified themselves by their citizenship in the first place and by their culture only in the second place.   However, when the “Racial Laws” took hold, there was the sense of being both a citizen of one’s native country and a member of a subordinate special group, in effect fitting the theory of a double consciousness.  Identification with country was then superseded by designation of members of the group as a cultural subset with, as history tells us, subsequent catastrophic effects.

I think that both these two theories might also be applicable to various other populations with which I am much less familiar—the Hutus and the Tutsis, perhaps, or the Bosnians and the Serbians, as well as to most other marginalized and therefore disadvantaged ethnic groups  As is often said in the concluding lines in papers of scientific research, these theories may well bear further scrutiny.

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