Between Privacy & Transparency Comes Invisibility & Visibility (Rare Disease Day 2014)

Pic of the day - A Crossbanded Sky

Today is Rare Disease Day 2014. I’ve been an enthusiastic promoter of Rare Disease Day and everything it stands for since the first one on February 29th of 2008. A friend of mine, Denise Silber, was instrumental in the activities behind its beginnings in Europe, and at that time I was intimately involved in my own work life with dentistry and facial difference, where birth defects and rare diseases are often looming concerns for clinicians and caregivers. Since then my work has often dealt with healthcare social media, where issues of privacy and transparency loom large. I’ve been spending a great deal of time in the past year or so thinking deeply about privacy and transparency issues, as part of writing my book chapter for the recent Barbara Fister volume from ALA.

My new book chapter on privacy & transparency
Finding a public voice, Barbara Fister as a case study:

This morning, catching up on email and Twitter, there were two pieces made me perceive differently the pivotal role of privacy and transparency in healthcare communities, both versions of which ultimately tie into the same foundation.

“For one, letting a website know you’re using a screen reader means running around the web waving a red flag that shouts ‘here, I’m visually impaired or blind!’ at anyone who is willing to look. It would take away the one place where we as blind people can be relatively undetected without our white cane or guide dog screaming at everybody around us that we’re blind or visually impaired, and therefore giving others a chance to treat us like true equals. Because let’s face it, the vast majority of non-disabled people are apprehensive in one way or another when encountering a person with a disability.”
Marco Zehe. Why screen reader detection on the web is a bad thing.

This highlights the issue of persons being excluded from mainstream society while they are visible, and seeking anonymity or invisibility in order to be accepted and treated “like everyone else.” There are many other examples like this — any condition related to facial difference carries stigma; any condition that makes difference visible (such as wheelchairs or service animals or assistive technology); other social situations that might be visibly connected to stigma, such as race, poverty, gender, gender identity, etc. In this context, visibility is … awkward, and sometimes painful. Or rather, it is the situation of being visible while being made to feel invisible at the same time. Alternatively, if acknowledged as visible, they may be objectified, as a token representative of the disability or stigma, or with the assumption that they are incapable or insufficient in some way. In these communities, people sometimes find that by making themselves differently visible, such as being in online communities, they are no longer put in the position of being pushed into pseudo-invisibility or are given the opportunity to succeed or fail, to contribute based on their own capabilities as an individual, not being judged by their situation or condition or disability.

It is hard not to next think of conditions or situations in which the condition, situation, or context begins with invisiblity — mental health, diabetes, chronic fatigue or chronic pain, many other chronic illnesses. For many of these (and I count myself among them), the person has genuine restrictions on what they can do, but this is not evident to others, who expect the person with the invisible disability to be able to do much more than they really can. It isn’t uncommon to hear “but you look normal.” It isn’t just invisible disabilities, of course, but also the social or cultural context. Did you grow up poor or battered or otherwise traumatized, and now feel as if you don’t ‘belong’? There are times, as a person with invisible disabilities, that I wish I had a sign to say, “Quit laughing at me because I can’t do what you take for granted! Quit expecting me to [fill in the blank]. You don’t understand how hard it is for me because it is easy for you.” Times when I want something that says, don’t expect too much because I’m not as able-bodied as I seem. But that doesn’t last long.

Pic of the day - White Pride

Somewhere in between both of these comes the idea of passing. Passing as white. Passing as straight. Passing as middle class. Passing as healthy. Passing as sane. Passing as “normal.” Those who, visible or invisible, actively seek and cultivate a specific image or identity to project, often less by choice and more by necessity, a need to have a job, health insurance, a safe neighborhood. As long as I can “fake it” as able-bodied, you can bet I will be doing so. Partly for the practical reasons just mentioned, and partly because trying to seem able-bodied makes me actually stronger and extends my endurance in real life.

There is more to the idea of visibility and invisibility in health care. With rare diseases, part of the challenge to diagnosis is the very fact that they are rare. The assumption for most diagnosticians is that the rare condition is unlikely, and that the more likely options should be ruled out first. This is strategically sound and wise, but results often in long drawn out diagnostic processes. THe idea that the diagnosis is a rare disease is almost an invisible idea. Then, after receiving the diagnosis, comes the feeling of being invisible in a health care system designed to support the more common diagnoses. Feeling invisible in the sense of seeing no one around who is “like me.” Feeling invisible because you can’t find someone else who’s life is “like mine.”

Invisible because you can’t find a way to make your life visible. Invisible because the challenges you live with aren’t taken seriously. Invisible in that people look at you and see someone different from who you believe yourself to be. Invisible in that the condition or disability is invisible, and some how you got carried along with it, fading away. Invisible in the sense that your fatigue, or pain, or lack of mobility, or other challenges keep you out of mainstream life; that you can’t afford to go to movies or shows because your meds cost so much; that the largest part of your life is hidden and unseen.

There are times when you want the privacy so you don’t need to explain. And there are times when you wish it was all visible already so you wouldn’t need to explain. Visible, invisible; private, transparent.

“In our case, privacy meant that Maureen’s health information was not visible (or transparent) to the team of oncologists and pathologists at M.D. Anderson as quickly as we needed it to be, so that a diagnosis could be rendered swiftly and a course of treatment commenced immediately. Privacy, without necessary (and user-controlled) transparency, can indeed be the difference between life and death.”
Gary L. Thompson. “A View from the CLOUD: Are Privacy and Transparency on a Collision Course or Two Sides of the Same Coin?”

Gary points out some very important issues here. Privacy, unwished for, can be deadly. Transparency, unwished for, can also be deadly, such as for victims of bullying or domestic violence. The invisibility of “rare diseases” in the diagnostic process can slow things down to a dangerous pace. Not knowing what is wrong can be dangerous, can result in ‘treatments’ that make things worse, or at best delay getting better. Not being able to get a diagnosis is isolating and frightening. Looking “normal” when you aren’t can be isolating. Being treated as “invisible” when you aren’t is isolating. Having a rare disease, any rare disease, is isolating. Transparency can do away with parts of the isolation, but then can also open the door to other possible risks.

Until the world becomes a perfect place, we will need both privacy and transparency, we will need the opportunity to choose between them, to shift between visibility and invisibility.

Rare Disease Day 2014

More about Rare Disease Day

Global Genes:
NIH: Rare Diseases:
Rare Disease Day US:
Rare Disease Day US: Map:
NORD (National Organization of Rare Diseases):

6 responses to “Between Privacy & Transparency Comes Invisibility & Visibility (Rare Disease Day 2014)

  1. Great post! This is my first year following Rare Disease Day. I didn’t find out about until about a week ago, so I was only able to share and promote the day, but I will be working towards promoting it more heavily next year and learning how I can participate and what I can do to make a difference. I have plenty of time to study and promote various causes associated with Rare Diseases until that point.

    My friend Belinda suffers from Chiari Malformation Type 1 and is not far from her Posterior Fossa Decompression Surgery. I suffer from undiagnosed pain, so I understand what it’s like to have invisible symptoms. I know something is terribly wrong with me, but I’ve been to doctor after doctor (including various specialists) and I’m still going. In my 35 years, I never had anything that a doctor couldn’t quickly diagnose and “fix”, so it’s very frustrating, especially since my family members don’t understand how much pain I’m in. I have found something that makes me feel better in the meantime, but underneath my exterior there is still something wrong.

    Sometimes I wonder if it’s simply weight and I even posted about that last night, but then I think why would my neck hurt and my shoulder hurt from weight. Why would my wrists and elbows hurt, why would my fingers be numb. It’s not like people can see “NUMBNESS WAVES” coming from my fingers and why would I have multiple vitamin deficiencies?.

    I’ve changed my diet (no processed foods, only organic produce — working on grass fed meats and poultry — a tad expensive for my budget), I cut out caffeine and I still feel that underneath my skin, even though I’m feeling better from the supplements I found there’s still something going on.

    Thank you for your post and for raising awareness!


    • Hi, Melissa! Thanks for your comment! Chronic pain is a misery, for sure. For me, I found that gluten turned out to be the problem causing most of my pain and vitamin deficiencies (celiac). Someone else had exactly the same symptoms I did, but their trigger was dairy. I hope you and/or your doctors are able to find what is causing you problems!


  2. I am so thankful that I caught your tweet in the #MedX stream last week and am blessed that the blog post I shared on privacy and transparency would fit in so neatly with your beautiful words on visibility and invisibility.

    Following your visible/invisible meme, I have commented frequently that the problem with cancer is that once you are diagnosed, its identity is allowed to substitute for the one you already have. When we get a cold, we don’t become “Gary, he has a cold.” But with cancer, like my wife’s, it is all too common to become, “Maureen, she has cancer.” The only parts of cancer Maureen and I want to be visible from her cancer are the positive things it has caused: the cherishing of life, the realization that having dinner together with our three kids is magic time; hearing her sing “good morning sunshine” to wake up our kids moves my soul; and an endless list of other beautiful things. It has also caused a transformation in my own life. I have changed everything I am and everything I do, because I love my Maureen. I will not allow her to fight cancer alone. My love is no longer invisible but is instead very, very visible.

    To make my work on CLOUD more “visible,” I will share a few links below to articles and my recent TEDx talks. The key to CLOUD’s work to “reweave the fabric of the Internet” is to make it possible for us to create “digital fabrics” that let us show only those “threads” that are contextually relevant to our interactions at the moment. In the virtual world, it should indeed be possible to show only those parts of my identity that matter. If I were to lose my sight, I would still feel my love for Maureen, because I “see her” across a multitude of dimensions, the deepest of which comes from my heart and my soul.

    I should be the one to choose which of my threads are visible and invisible, dynamically and in context and on my terms. That is the heart of CLOUD – Consortium for Local Ownership and Use of Data. Here’s a little more of the CLOUD story and my own. The world is ours to change:

    Gary Thompson on the Internet’s CLOUD-y Future | Penang Monthly | Ch’ng Chin Chin | 1.6.2014

    The Internet’s New Palette – Changing the Art of Cancer | TEDxWeldQuay | Penang, Malaysia | October 12, 2013

    The Fight With Cancer – Can a New Internet Change the Human Ecosystem? | TEDxTrastevere | Rome, Italy | October 16, 2013

    The Fight With Cancer – Can a New Internet Change the Terms of Battle? | TEDxTallaght | Dublin, Ireland | October 17, 2013


    • Gary, what you say about choice really resonates.

      “I should be the one to choose which of my threads are visible and invisible, dynamically and in context and on my terms.”

      I was thinking about that a while back, and integrated it into my model for privacy & transparency dynamics, which was based heavily on close reading of David Brin’s The Transparent Society, observing his reactions over years to various real world events, and other thought provoking pieces by other authors, all sifted and compiled through my own mind.

      Here’s a picture of the image
      PROTEI Model of Privacy & Transparency

      Choice was the “options” part of the idea, and implied in reciprocity. So good to see other folk thinking and working along the same lines!


  3. Evidently, this is a prime time for this topic. I just found Jay Lake’s post from yesterday on the topic of conversations around visible vs invisible illnesses. He had this profound insight to add: “Except suffering is not a contest. Suffering is not a race to the bottom. It’s not a competition to see who has the worst, most unspeakable affliction.”


  4. Pingback: A Culture of Blame: Stigma in the ER (Rare Disease Day 2015) | Emerging Technologies Librarian

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