Rare childhood diseases (a personal and political aside)

Why I support the National Pediatric Research Network Act of 2013

When our son was 4, he developed a rare neurological condition caused by a complication from an ear infection. It was almost Christmas. He was in the hospital. His intracranial pressure was three times what it should have been. He was having severe headaches and was in danger of going blind if doctors didn’t do something soon.
The first neurosurgeon we met with said he had seen five cases like it in his career, and he was not a young surgeon. He told us he would try to answer our questions (and get Max home for Santa), but he just didn’t know all the answers because this was not a typical case or situation.
As we started bringing him to treatments and scheduled surgery to have a shunt placed, we often wished we had more information. That was seven years ago, and we’ve seen many specialists in that time for follow-up care. He is doing well, but we still find there’s not a lot of information. We still encounter occasional disagreement among his doctors even over what to label the condition. There are doctors — including one at Arkansas Children’s Hospital who have done research around this issue. but this is a rare condition, affecting 4 in a million boys in my son’s age group. It doesn’t make economic sense for the health care industry to invest in research for a condition that affects less than 1000 children a year. That’s why government needs to play a role.

The Future of the Internet? (and how it works as a learning tool)

Over the last couple of days, several items have surfaced in my social feeds about how the Internet doesn’t work and what to do about that. First came Ethan Zuckerman’s description of advertising as “the Internet’s original sin.” which was inspired to some degree by Maciek Ceglowski’s The Internet with a Human Face. Today Mike Caulfield wrote about link rot and data impermanence.

Common to Caulfield’s and Ceglowski’s critiques is the notion of decentralization as a way forward. Taking Mike’s concepts of federated note taking as a point of departure, I’m thinking a lot about what that sort of decentralization might look like in education. What sort of tool set does the digital learner need? I think of two things:

  1. A notebook/research space – somewhere to collect thoughts, ideas, sources, and evidence and connect them together. One should be able to keep things private, make them public, or in between.
  2. A portfolio – A place to present finished artifacts for evaluation by teachers, admission committees, potential employers, etc.

Smallest Federated Wiki + page level access controls + paragraph level attribution would do a bang-up job at #1. WordPress or perhaps something like Mahara is well-suited to #2. Is it desirable/necessary that they interoperate? (so that items in your portfolio would come with attribution chains already attached) What else does is a must have for the modern digital learner?

Personal Wikis – A How-To Including Better Icons

Inspired by Mike Caulfield’s tireless evangelism for personal wikis, I decided to set up an instance of Smallest Federated Wiki and not rely on someone else’s farms. Mike has been kind to set up sandboxes for us to play in, but much of the point is to have your own instance that you control.

The first and biggest hurdle is that Smallest Federated Wiki (SFW) won’t run in shared hosting, and some sort of dedicated server is required. A VPS isn’t that hard to find, but I’m thrifty, and have a computer that’s on most of the time in my house. I proceeded to download NodeJS and install a local wiki, which seemed to work fine, but it was only partly federated. I could fork pages in, but it wasn’t on the public web so nobody else could fork from it.

I had, in my explorations of the IndieWeb movement, discovered pagekite, which uses a python script to reverse tunnel from your computer to a subdomain.pagekite.me address. The service is pay what you want, but less expensive than most VPS’s. In order to do this more safely, I decided to run the SFW instance inside a debian Virtualbox VM.

Once the VM is up and running, install nodejs and npm

apt-get install npm

Then use npm to install wiki and pm2

npm install wiki -g -f
 npm install pm2 -g

. For some reason I can’t get wiki to start from the shell so I had to use pm2 to launch it. Find the wiki index.js. On my VM it was /usr/local/lib/node_modules/wiki/index.js . I then typed

pm2 start ./index.js

and a simple web connection to localhost:3000 gave me a live SFW node.

After downloading the pagekite script and establishing your account
pagekite.py --signup
 you launch with
pagekite.py 3000 http://yoursubdomain.pagekite.me
The 3000 is there because that is SFW’s default port.

I could now see my VM instance through the pagekite URL and fork from it, but there was still one problem. SFW uses Mozilla Persona to handle editing privileges. I could claim the wiki and login when I was on localhost, but trying to connect via the pagekite URL generated a login error. So my wiki was viewable from anywhere but editable only from the console. I submitted an issue to the SFW Github repository, and the helpful folk there explained that Persona expects certain ports and urls. To make my wiki editable from everywhere required:

pm2 stop [id of wiki process]
pm2 delete [id of wiki process]
pm2 start ./index.js -- -p 3000 --url http://mysubdomain.pagekite.me

You apparently have to tell SFW what URL and port you are running on for Persona to work.
Also note the — between the script path and the arguments that will be passed to the script.

One of the frustrating things about SFW is that individual instances are distinguished by a color gradient favicon,  It’s often hard to remember which gradient belongs to whom.  Once you have a local instance, you can fix this.  SFW stores your files in /home/username/.wiki . The favicon.png is stored in a status subdirectory of .wiki. Just replace that .png with a square PNG file of your choice with the same name (favicon.png). I’m not sure what the maximum size is, but 64 X 64 worked.

The problem of agency

Yesterday, John Warner responded to an Anya Kamenetz story on Purdue’s Course Signals initiative. Course Signals reported successes have been questioned, but I want to focus on something else. Warner writes:

For example, what if one of our goals for students is the development of agency, the ability to negotiate and exert control over their own lives? What if we believe this is an important goal because it is significantly correlated not only with success, but happiness and well-being?…What if we believe that failure is a productive part of learning?  What if we worry that their adult lives will not come with Course Signal warnings?

It’s at least implied here that the sort of things Course Signals does prevents students from developing their own sense of agency.  That may well be so.  I also agree that failure can be a valuable part of learning.  However, for failure to be a catalyst for learning, failing has to be low risk.  For most students, it is anything but.

Students may learn from failure that they are on financial aid probation or suspension, and thus can no longer receive funding.  Even if that isn’t the case, lifetime Pell limits and the 150% rule place strict boundaries on the amount of failure one is permitted to learn from.

Warner suggests that intrusive support doesn’t foster learner agency, but he doesn’t recommend an alternative.  Most of the time, we encourage agency by giving freedom to students and hoping they make good choices.  Unfortunately, that approach doesn’t actually do much to help a student who doesn’t know how to manage his or her life and learning figure out how to do it.  For these students, agency has to come in small doses.  You can allow them to pick their own topic for the major project, but they need a detailed road map explaining all the steps and how to do them.  You probably need to make those intermediate steps graded assignments in their own right, so you can see if a student is falling behind.  Wait a minute, that sounds a little bit like Course Signals. I suppose you could encourage agency by making students create their own plan and identify their own milestones.

More than one way to wrangle a POSSE

Within the last few weeks, Tim Owens (who was I think first among my network to manage it) David Wiley and Jim Groom have all written about using Known as a POSSE (Publish Own Site, Syndicate Elsewhere) hub.  I asked Tim as soon as I read his enthusiastic post whether a trusty WordPress install could be coaxed into doing the same thing with enough plugins.  I can now report that the answer is at least mostly yes.

To start, I installed the webmention and indieweb plugins,  This didn’t in and of itself do much, since I wasn’t using a theme that supports microformats.  However, before I got around to trying to install a microformat plugin I saw Ryan Barrett‘s comment on Mike Caulfield’s post about IndieWebCamp Portland, encourarging Mike to try brid.gy, a service which moves webmentions to and from silos like Twitter, Facebook and Google Plus. At first, I was skeptical.  Isn’t the point of IndieWeb to free yourself from third party services?  But there is a GitHub repository, so I figure If something were to happen to the site proper, I could at least try to self host,

I decided to start with just Twitter integration.  I’m a light Facebook user and tend to keep it segregated from the rest of my online identity.  I use G+ even less, On the one hand, I might use it more if I could integrate it,  On the other hand, the point of G+ was being able to easily target messages to different audiences,

Signing up was straightforward, with the usual two step of authorizing a Twitter app, and mentions began to flow in quickly.  Publishing out to Twitter wasn’t quite as easy. It involved putting a hidden link in the body of any post you want to publish.  It works, but it’s a hassle. I had considered using a plugin called Social, but this apparently overrides your blog comment settings and allows anonymous commenting.  I wasn’t quite ready for that.

After manually editing several posts to send them to Twitter, I discovered a second problem. My blog, which I think of as being at least hopefully for slightly longer form things, now had a front page full of tweets.. How could I make them less prominent?

The answer was two more plugins, both suggested by Ryan, who was very patient and helpful.These were Ultimate Category Excluder and IndieWeb Press This.  The former is a straightforward install from the plugin menu.  The latter is a manual install.  Tim helped me realize that I needed to download the ZIP archive from GitHub rather than the individual files.  There are also JavaScript bookmarklets that need to be manually edited.  D’Arcy Norman also mentioned his Ephemerator plugin, although I couldn’t get my WP install to recognize it,

There are just a few things I’m still working to improve:

  • I don’t know how well the JavaScript bookmarklets will work on my mobile device
  • You can’t reply to a tweet when you are in timeline view.  I had to click on the author’s profile link, find the tweet in their page, and then click Details to get the tweet on a webpage by itself before the Reply bookmarklet would work.
  • I’m still stuck manually inserting the HTML when I want to publish something that doesn’t refer back to some other page or post,or refers to many, as this post does.

I’d be interested in putting together a feature comparison of Known with this setup if anyone with a Known instance would like to collaborate.



More Federated Wikis

Mike Caulfield is now explaining wiki federation and its benefits by means of a movie recommendation example.  In the (surprise) federated wiki he set up to document this, Mike writes:

“Wiki is largely an architecture of collaboration. These things fall on a scale, of course, but if you go and ask people on Wikipedia what their goal is, it’s largely aligned. People are working towards a common vision, and to do that they extensively modify their behavior, and that’s lovely.


You know the common vision is important, because when people step outside that common vision they get hammered on the talk pages. That’s the price you pay for a common vision — a bureaucracy to enforce it. And for Wikipedia, that trade seems worth it.


Federation, on the other hand, is an architecture of cooperation. And again, these things are not binary. They exist on a continuum. But the idea of federation is to do what you would do anyway, but do it in a way that allows it to feed into the common good (and allows you to pull from the common good). ” 1

I think education/learning also fits the dichotomy Mike has laid out here.  Education and its economies of scale require the alignment of goal and vision.  everyone in a particular class has the same curriculum  We do the same assessments and activities at the same time, and boy do we have an bureaucracy to enforce it (writes a member of said bureaucracy).

Compare this to someone who is studying something and taking some notes. Whether or not they are in a class, there are many other people doing the same thing.  How could my Cornish grammar notes or  someone else’s notes on R syntax feed into a learning common good?  What would it look like?  What would it do for us?

Even within the constraints of formal education, imagine if my class had a fed wiki farm.  Every student has her own instance.  If I find a gap in my notes, I search the federation for someone else who has filled it.  If I, on the other hand, see something that doesn’t make sense to me, I just don’t fork it.  If the students actually managed to control their own instances/run their own SFW servers, they could keep those notes permanently rather than losing them at the end of the term.


Federated Wikis – A Use Case

Mike Caulfield has been writing up a storm on federated wikis,  a tool where users maintain their own site , then copy/fork individual pages they want to keep or edit from other sites in their federation. Today Mike, Tony Hirst, and Boll Fitzgerald had an energetic discussion about when to fork and when not to fork in a federated wiki (particularly in Ward Cunningham’s Smallest Federated Wiki , henceforth referred to as SFW, the federated wiki sandbox of the moment)

I think there’s a semantic issue here.  In a software context, you fork because you want to take the project a different direction, as opposed to submitting patches to the existing codebase.  In a SFW context, a given wiki belongs to a particular individual, and only that individual can edit pages within that wiki.  Clicking the fork button does two things

  1. Makes a copy of the page with the same name that you can edit as part of your wiki instance
  2. Starts tracking changes on the original

Even if you don’t intend to make changes, you may fork a page in order to have a local copy. As Mike points out, this is in and of itself a good thing.

Some of this concern about forking and changes stems from conceptualizing SFW as a publishing platform. Maybe this isn’t the right concept.  Instead, I imagine a sort of public notebook that it’s very easy to copy from.  Since it’s mine, I can keep any page in the state I want it, but anyone else can grab what they want while maintining at least some sourcing/changelog.  In the discussion this morning, Mike mentioned that versioning a single document pushes a group of authors towards consensus, presumably since the system requires that one ends up with one document.  Federated wikis show what can happen when that constraint is removed and people can create together individually.  We’ve never really had that kind of tool. before. what might you do with it?

Mike’s demo SFW project, The Hidden History of Online Learning has been a fascinating introduction to the platform.  The federation allows users to create and organize in whatever way makes the most sense to them and fork from others only what interests them.  What if you took it another step.

Your wiki is your central learning repository.  It allows access controls so you have public (your portfolio), restricted access (group collaboration) and private (your thesis first draft) pages,  Into these pages you can drag all sorts of content .  For that matter, you might be able to set permissions on each JSON object for very granular access control.  You might then export content to a publication platform like a blog when it’s in a final form.