[Ryan Weber] Sometimes it feels like we’re drowning in medical information.
[Man # I] Heart disease. It’s projected that one out of every four people in the United States will die
[Man #2] Glaucoma is one of the leading causes of blindness, not the scariest.
[Woman #I] Lime disease is weird, mysterious, and can be pretty-.
[Man #3] Perhaps you’ve heard of this brain-eating amoeba that’s sweeping the-.
[Man #4] We have our diabetes busting smoothie and the whole goal is to inform you about diabetes-.
[Weber] But despite all the information that we have, many people still aren’t getting the information that they need, especially when people are dealing with sensitive situations or when they’re trying to find information about something they’d rather not address at all. Today I bring two guests to help us wade through the field of medical rhetoric, the study of how information can be given to patients in a way that’s accurate and effective and useful.
[Lisa Meloncon] My name is Lisa Meloncon. I’m an Associate Professor of Technical Communication at the University of Cincinnati and I also direct the McMicken Health Research Center out of the College of Arts and Sciences.
[Amy Reed] Hi, I’m Amy Reed. I’m an Assistant Professor of Writing Arts at Rowan University.
[Weber] Welcome to a special super-sized episode of 10-Minute Tech Comm, featuring panelists from the recent Rhetoric Society of America Conference in Atlanta. I’m Ryan Weber from the University of Alabama in Huntsville. We’ll talk with both Lisa and Amy about their research. Lisa looks at the online information available to teenage boys who are dealing with depression, while Amy looks at the pamphlets given to expectant mothers and fathers who have received a pre-natal diagnosis of Down Syndrome. Both of them will present this research at the Bi-Annual Rhetoric Society of America Conference in Atlanta in May 2016, and I wanted to bring some of their research to the podcast because it’s very informative about how technical communication can explore these questions of, “What patients need and what they’re getting?” For both Lisa and Amy, their projects started with an awareness that people just weren’t getting the information they needed in the way that they needed it.
[Meloncon] This project actually started as an offshoot of a previous one, it’s a large multi-stage project where I was looking at information, health information, for adolescents and in this case, that adolescents was defined from 15 to 22, and when I was looking at it initially we focused on girls and as we were looking at it, I was like “Where the hell is the stuff for the guys?” That became a kind of offshoot and then an interesting thing just kind of came to the floor, was that there was lots of information on some of those websites for adolescent girls about their mental health but there was no button on many of the sites for adolescent males and it’s like, “What the heck is this?” Then as weird, ironic, sad, twist of fate happened, one of my nephews committed suicide and he was 18 in the middle of that project. And it was like, “We have a problem.” And so when you look at statistics in the U.S., that one of the largest demographics of suicide are adolescent males, age 15 to 22, and so I began to wonder because teenagers, research has shown go to the web to look for sensitive topics more than they talk to anyone. So where would they go if you type in these search terms and really nothing comes up, what do you do? And so that’s how it all got started.
[Weber] Amy’s work looks at the medical information that emerge in response to federal and state legislation requiring better information for parents trying to make decisions when they’re expecting a child with Down Syndrome.
[Reed] The impetus behind this legislation was that parents were relaying these experiences of really negative experiences getting the Down Syndrome diagnosis, both in terms of you know the sensitivity of their doctors in delivering that information but also in terms of the inaccuracies and outdated information that they were getting about Down Syndrome. So, one of the, the testimonies in Maryland, for example when they were introducing their legislation, was parents spoke about how in 2006 after getting a post-natal diagnosis, she got a pamphlet from the hospital tided, “So you’ve had a mongoloid. Now what?” Which you now, is really discriminatory, derogative language and really surprising that she would be receiving that in 2006. There’s this real sort of pressing need both within the medical community and within the advocacy community to sort of educate doctors on how to deliver the diagnosis and to create materials that parents could receive that you know everyone kind of agreed was balanced, accurate, up-to-date information about Down Syndrome.
[Weber] In both these situations, adolescent males dealing with depression and parents trying to make decisions about Down Syndrome, information is arisen to try to meet these medical needs. What Lisa and Amy look at is whether this information is sufficient and how it’s shaped by the people who create it.
[Meloncon] There are these weird, interesting sites some of them are sponsored by magazines, some of them are sponsored by like sporting goods entities, others are sponsored by hospitals, and hospital systems. So, one of the most comprehensive you’ll find is sponsored out of Nemours Children’s Hospital, they’ve done some really good work in trying to put information online but you’re not going to find something similar to WebMD for adolescents.
[Weber] According to Lisa’s research the little that you do find online that’s targeted specifically at teenage boys who want more information about depression is often insufficient. In many cases, it’s too simplistic to meet their needs.
[Meloncon] Or it’s on the other side that it begins to get too complex and long and you wonder who’s reading that. You sort of look at it and go, “There’s still-this could still be improved,” from again the things that we know in tech comm about chunking information and using headings and whitespace and having visuals that you know data visualizations that may show if you do “x” over a period of time. You know so all of these sorts of things that we know quite well, you’re not seeing those on a lot of the sites and then when you might be distracted from all the colors and the ads and these other things that begins to raise these series of really interesting and thought-provoking questions that tech comm and rhetoric in health and medicine are ideally situated to answer.
[Weber] For Lisa, this case study demonstrates how technical communication can return to questions of whether online information is accurate. Not just in the sense of whether it’s factually accurate but rather the people who need it can use it to make good decisions.
[Meloncon] You know 20 years ago we really looked a readability a lot and we looked a readability online, right? Because the web is this new crazy weird thing and then we moved away from it and I would argue we need to circle back around to not necessarily readability but understanding this information about accurate comprehendible and what all of that means as far as delivery of information. So, to answer your question, in some ways it is accurate but in other ways I would question whether or not it’s truly usable and comprehendible.
[Weber] While Lisa’s research reveals that we could probably give adolescent males better information about depression, Amy’s research charts the tensions that led to two competing pamphlets about Down Syndrome.
[Reed] Following some of this legislation, the Down Syndrome Consensus Group was convened, which included members of the major medical organizations as well as members of the major national down syndrome advocacy organizations to try and come together because there were skepticism on both sides about the motives of the other. So, for the advocacy groups, many of the people involved with those groups had themselves had maybe negative reactions with medical professionals but certainly they had heard stories of other people how had. Additionally, around this time the major obstetrics professional organization, ACOG, had released new guidelines suggesting that all women, not just women who were labeled as high risk, should get pre-natal testing. And this was a big deal for the advocacy organizations because pre-natal diagnosis does not lead to pre-natal treatments, instead it’s justified on the ability to offer women the chance to terminate a pregnancy. And as you can imagine, like that’s a really contested thing within the down syndrome community, whether termination on the basis of down syndrome alone is appropriate. Especially as there’s you know new advances in education, in therapies, but also research showing that high percentage of people living with down syndrome are happy with their lives and so this sort of appropriateness of termination in that situation is debated, at least within the down syndrome community. For their part, medical professionals were skeptical that advocates maybe wanted to challenge their authority or challenge reproductive autonomy of their patients and maybe push a message that was not balanced but more positive about down syndrome. So, this consensus group convened to create some materials that everyone could agree on, that could present down syndrome in a way that what I think everyone was realizing was necessary. That was important to present down syndrome as something that was not just a medical condition because that’s not as helpful to parents as also receiving information about like, “Well what is the experience of raising a child with down syndrome? What is it like to have down syndrome? What can we expect these people to achieve beyond just a list of health?” So, that was the first pamphlets called the Letter Case Materials,” well within about a year, a-the advocacy organizations all distanced themselves from that pamphlet, took off references to it on their websites and came up with their own pamphlet called “Down Syndrome Test,” that’s at downsyndrometest.org. And the biggest difference in the pamphlets was that in the second one created just by the advocacy organizations, there’s no mention of termination at all and so at the time a medical geneticist who’s really prominent within the down syndrome community as well as within the medical genetics’ community, is recognized as an expert in down syndrome, he kind of came out with this statement saying, “The advocacy groups have,” I’m going to quote him here to get this right so, “Have replaced clarity with confusion and collaboration with competition.” And he suggested that the new template contained factual inaccuracies and that would be perceived as non-objective and not balanced by a lot of patients and so he had a lot of concerns with it.
[Weber] When I asked Amy about the differences between these pamphlets, she wanted to emphasize something else.
[Reed] The first thing I want to talk about is their similarities. Actually, in terms of how they represent down syndrome, they’re really pretty similar. Both I think achieve the goal of the legislation to create materials that go beyond a medical, strictly medical interpretation of what down syndrome is. So, you know from a medical perspective you might expect a doctor to talk about down syndrome as being a chromosomal abnormality, being associated with heart defects, low muscle-tone, moderate to mild intellectual disability, this kind of list of things, which in and of itself, while it’s factual it’s also persuasive. You know to get a long list of things is scary, can be scary and overwhelming for a new parent. Both the pamphlets, I think, do a really good job of putting that medical information in context or giving patients a way to interpret that list. So, you know they’ll say things, they’ll explicitly say things like, “While down syndrome may be associated with lots of these things, typically someone with down syndrome would only have one or two of these complications.” You know so they’ll give a framework for it or they’ll say things like-they’ll frame the entire medical discussion by saying, “The person with down syndrome is a child first. A person first and this medical condition is only part of that person.” Another thing that I think that they both do, which is really important is to include photographs of people with down syndrome. So, again if this was like strictly from a medical orientation, if you were thinking about the way that a medical textbook talks about down syndrome, you might see like a-an image, a hand drawn image of a baby with down syndrome that’s labeled like a specimen. You know like, “These are the typical facial features that we would recognize from someone with down syndrome,” but these pamphlets don’t do that. They give pictures of children with down syndrome with their parents, with their siblings, doing things like reading a book or there’s one picture that’s a very striking of a little girl sitting at a table coloring and you know she’s wearing the most adorable outfit and her hair is fixed and you know it’s-gives this image of a child who is well loved and cared for and is thriving. And so yes, those images certainly have a-an appeal to pathos but they’re presenting a whole person and so I would argue that in that sense it is more balanced than maybe what you would see in a medical textbook. So, both of the pamphlets, I think, do a good job of presenting down syndrome in a way that takes it out of strictly a medical sphere, but then I guess to answer your question about how are they different. The way that they’re different, that I’ve noticed, is mostly in the way that the pamphlet reacts to and engages medicine. Medicine in the Letter Case Materials, the original pamphlet is presented authoritatively and the medical professional is referred to as sort of the point person that a parent would coordinate with to get access to any type of information or questions that they would have about down syndrome. And even beyond that medical technology, pre-natal tests are sort of presented in this neutral objective, taken for granted back-drop way, whereas in the newer materials, the downsyndrometest.org, medicine is, from the very beginning of the pamphlet, sort of portrayed adversarial I would say. And it really doesn’t make sense unless you start to know some of the context and the research that’s going on behind the scenes. So, the second pamphlet starts out with this really bizarre sort of warning, like-and it talks about pre-natal tests and says, “You don’t have to get a pre-natal test. That should be a choice that’s presented to you. You should never feel coerced into taking it or if the test is mandatory.” So, I can see that for a new audience member that would be a really confusing way to start the pamphlet, but what I read that as is reacting to is research that shows that oftentimes women don’t feel like they have a choice when they get a pre-natal test and some mostly theoretical research that-and commentary that suggest that once women enter into the complex of getting pre-natal screening and pre-natal testing, that they might be more inclined to sort of terminate or to view down syndrome as a medical deficiency and defect. And so, again it’s like this reaction of fear towards what medicine’s ultimate aims or goals are in offering pre-natal testing and offering termination for down syndrome to begin with. And that kind of continues throughout the pamphlet, so whereas the Letter Case Materials, again represent your medical provider as the sort of benign, benevolent point person to coordinate your care, in the down syndrome pregnancy test materials, they suggest you know talking to your family and friends, consulting with a spiritual advisor, and like kind of saying, “The medicine-the medical people are one resource available to you but they’re not an expert. They don’t know your personal values. They don’t understand the support that you have in your life or what resources you might have and so maybe they’re not the best parson to facilitate your decision making.”
[Weber] Amy’s emphasis on the context, it determines what information ends up in the pamphlet is important for both of our guests. Both of them emphasize that people come to medical information not as blank slates but with anxieties and predispositions and concerns and that people producing medical information need to take these things into account. For Lisa, adolescent boys who are looking for information in depression have a very vested interest and motivation in seeking that information out.
[Meloncon] We’re trying to find out if they’re crazy, both literally and metaphorically. They’re trying to understand themselves in hopes that they can figure out the next step and so they’re just, they’re searching, is all that they’re doing. They’re just searching and they feel so bad about needing to search that that’s why their trying to hide it. It’s a little more complex than we give it credit for and when you start to throw in things around health and medicine and then people, it gets even a little more complicated, and so I rarely do research anymore that’s just text-based.
[Weber] Amy notes this same complexity and argues that people’s predispositions and biases about medical information actually need to considered in determining what information is neutral.
[Reed] So, one of the things that I would like to see become more a part of the conversation when talking about counseling parents about disability, is to acknowledge that patients aren’t coming to the table as blank slates. That they have their own experience with preconceived notions and biases about and knowledge about disability and so we’re not starting from scratch with these materials. I would like for people to raise the question of, “What does it mean to provide balanced information in a context that has a legacy of stigma towards disability and especially towards intellectual disability.”
[Weber] The research of both of our guests raises another important point, that in an Internet era people not only go online to get information from experts but discuss medical issues with one another.
[Meloncon] This is the part of research that’s just not getting started and will probably be the most beneficial, is we all know that there’s a dark Internet. We are starting to realize that adolescents particularly around very sensitive topics talk to one another mostly on the backside of the Internet and so we’re trying to locate those-.
[Weber] That’s fascinating.
[Meloncon] -and they’re not easy to find, so the initial conversations with adolescent males who have seen professional mental health specialists, we are starting to figure out where they are.
[Reed] Another strand of my research is looking at how women talk about their decisions to terminate and continue on online forums. There’s two forums that I look at: one where parents are choosing to continue, one where parents are choosing to terminate. And on the boards where people are talking about termination, one of the things that comes up a lot is that they’re very mistrustful of parents on the other board. They call that rhetoric of positive stories about down syndrome, they refer to it as the discourse of rainbows and unicorns, which like suggests that they don’t really believe it and I understand that because there is this tendency, we sort of have a lack of language for talking about disability in real depth. And so there’s a tendency to kind of revert back to that trope of like disability as a gift or disability as an inspiration, disability as something which changes “normal people” for the better, which it hasn’t itself been critiqued in disability scholarship and so I don’t necessarily fault parents for using that discourse because again there’s sort of this lack of language about it. But at the same time, I find it really odd on the termination boards that they’re so ready, many, many people there are so ready to talk about physicians as being objective experts. As somehow having more expertise than parents or even people living with down syndrome. It strikes me as really odd you know that they would say someone who has this very limited interaction with someone with down syndrome and only see that person in very specific circumstances could somehow know more about it or be more objective about it than a parent who’s raising a child with down syndrome, a sibling who’s living with a person with down syndrome, or even the person with down syndrome themselves.
[Weber] One of the reasons that I wanted to highlight the work of Lisa and Amy is that their work has such important consequences, in ways that they can so dearly articulate.
[Meloncon] When you start to see these staggering statistics, not only in the U.S. but around the world, that the second leading cause of death for male adolescents is suicide, you have a problem.
[Reed] I think that there’s a lot of work that rhetoricians could do in maybe making more visible the means we have of talking about people with disabilities as fully human and us talking about down syndrome as a difference rather than a defect.
[Weber] I want to thank both of our guests for appearing on the show today and let them know that we appreciate their time and their research. Both emphasize that their research is still underway and that there are many findings yet to be uncovered, both by them and others. So, we hope to revisit this topic in a future episode. Until then, thanks so much for listening.