I had an appointment this morning with my primary care physician. I thought that the appointment was to request a new lab test. Little did I know that the appointment was really so that my doctor, who shall remain nameless, could wax philosophical on me.

For nearly fifteen minutes, I was subjected to a lecture about how I should look forward to heaven. As if that were not enough, he left me with a list of related reading material. And then he went on to tell me about how I should do something meaningful with my life, such as telling my story to the local paper, so that I can raise awareness of the devastating effects of ALS on one’s life.

I am not defined by this disease.

I am sorry, but I don’t need to be told how to die or how to live. I feel like I have a good handle on both. And it’s not like I don’t want to hear about others’ perspectives on life and the hereafter, it just seems rude to lay it on someone without being asked first.

I used to live with Elisabeth Kubler-Ross, who wrote “On Death and Dying.” Not that he would know that of course, although he may have if he had shut his yap for more than five seconds.

To add injustice to the whole thing, he didn’t even order the lab tests that I had requested. I had wanted a Hair Element Test, to get a count of mercury in my body. He pooh-poohed that, telling me that because different labs report different numbers, that the test is meaningless. He instead ordered a Heavy Element Blood Test, which I have already had. I thought that I was prepared for a little skepticism, but after his lecture, I walked out of that office in a dazed condition.

Needless to say, I am open to recommendations for a new family doctor.

You may know me through my work with the Media suite of modules, and before that for my work with Embedded Media Field and Views Slideshow. You may have read my book, Drupal Multimedia, which I wrote before the birth of my second daughter, or seen me speak at a Drupal Camp or DrupalCon. You might have worked with me at a code sprint. Even if you haven’t met me, you might have seen some of my handiwork through one of the many sites I’ve helped developed over the years with Advomatic. Drupal has been a central part of my life - one of my three loves.

Earlier this year, my family and I were given some devastating news. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known in the US as Lou Gehrig's Disease, which is a motor neuron disease that is slowly killing the motor neurons in my body. This is an incurable, terminal illness: 50% of patients diagnosed are dead within 2-3 years, and a further 20% in five years. Only 10% of patients are still alive after 10 years, and the majority of those are "locked in", like Stephen Hawking, unable to move any part of their body other than their eyes. The senses and cognitive functionality are spared. The disease is a progressively degenerative Motor Neuron Disease (MND), that eventually kills every voluntary muscle in the body, until the diaphragm collapses, which is generally when the patient dies, unless they are given a tracheostomy (and don't succumb to pneumonia).

This rare disease is sporadic, with no known cause. It's considered an "orphan disease", with an incidence rate of about 1 in 100,000. My neurologist is hopeful in my case, as it's limb onset (rather than bulbar, or brain-stem, onset), and I'm on the younger side of the bell-curve. Still, an early prognosis is impossible, as the disease progresses randomly. Right now, he said that based on my EMG, he expects to see clinical signs in my legs by next year, although he can't say if I'll be in a wheelchair by then.

Currently, I am unable to lift more than about 1-2 pounds. It's been hard on my wife, as she's doing everything I'm unable to do (vacuuming, dishes, etc.), on top of raising our children and pursuing her Masters. Our house is the opposite of accessible, with no first floor bathroom and being on a steep hill. Thus, we're in the meantime looking to buy a ranch house that we'll be able to modify.

Although I have some visible atrophy in my shoulders, wrists, and thumbs, I'm feeling on top of the world. I'm trying to front-load my life now, to ensure I'm doing what I'm able to at full capacity while I still can. I'm hopeful; I've been expecting a medical revolution this decade, and if I can hold on with my wits, I might be able to take advantage of that. Even if that doesn’t happen, from reading about and connecting with other PALS (Patients with ALS), I've learned, unsurprisingly, that the longer-lived people are those who manage to maintain a positive attitude in life.

I'm fortunate to be working with Advomatic, both because my job (Drupal!) is something I'm still able (and love) to do, and because I'm surrounded by such a supportive team. I plan to develop for as long as I'm able; I'm looking into voice recognition software for when my hands ultimately go. In a race against time, I'm also 'voice banking', recording my voice so that when I ultimately lose my voice, the computer will sound roughly like me. (Hawking's complaint is that he sounds "like a damn Yankee").

I know that many of you will want to know how to help me and my family. I know from experience that the first response is to want to make food. I appreciate that, as a gift of food directly helps to sustain a person, but we have a large, helpful community through our daughter’s school that is delivering meals once or twice a week. (Although if you’re local to us, we could use some occasional help with the yardwork...)

You can also send donations to the ALS Center at Penn State Milton S. Hershey Medical Center
(see http://pennstatehershey.org/web/neurology/patientcare/specialtyservices/als for more details).

Finally, Advomatic will likely be setting up a fund to help for when I’m unable to work any longer, and to provide a legacy for my family. Please contact Aaron Welch if you are interested in contributing to this.

Thanks,
Aaron Winborn

"It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." - Elisabeth Kübler-Ross

New plan of action:

1) Pull File Entity from Media and store in its own project page.
2) Have Embedded Media Field create a new widget for File Fields, that offers a textfield in addition to the upload button, allowing to paste URL's.
3) The update from d6 to d7 will create a new file field in place of the old, which will store the parsed URI's.

Most of this is already in place, making the process much easier than it would have been earlier.

What do you think? Is this a reasonable course of action? Am I missing something?

This past month I've been busy getting the Styles module ready for release. This module does the heavy lifting for display of Media objects. For those that don't know yet, Media, the File Browser to the Internet, is the future of media handling for Drupal 7. It exposes the underlying streams API of Drupal core, allowing for fieldable media entities (fields on files), mixing up images and audio, local files and YouTube.

Basically, the Styles module allows you to select a style for display with a field (or in a View or with WYSIWYG), and the field will be displayed as determined by the predetermined criteria. For instance, as shown in the above diagram, you might set the display as 'Medium', and the actual displayed file or remote stream will be selected according to the file's mime type (as an image, a video, in an mp3 player, etc).

Read about the UI...

Here is an idealized transcript of the recent Drupal Dojo session I did regarding the proposed Drupal Guilds, which you can watch here if you didn't catch it earlier:

Also, here are the slides I used during the presentation, which the headers generally refer to, if you want to follow along the text:

My name is Aaron Winborn, and through the Drupal Dojo, I will now present some ideas I’ve had brewing around a concept for a Drupal Guild system for peer-review certifications. You might know me as a developer with Advomatic and contributor to Drupal for nearly five years. You probably don’t realize that I’ve also been involved with the Sudbury model of education for about twelve years, and am currently on the Board of Trustees for my daughter’s school.

First, let’s take a trip back through history.

Feudal Europe 2
Medieval Feudal Europe was not a fun place to live. Despite the image of knights and ladies held in the collective subconscious, everyone was a slave, or serf. All of Europe was parceled up into fiefdoms, where everyone worked to their death on the land. However, by the end of the early middle ages, a few barons came up with the idea of freeing their serfs and charging rent. When others realized they were making easily four times as much by doing this, within a century nearly all serfs had been freed.

The church moved from the center of town to the outskirts, to be replaced by the marketplace, where a new mercantile class sold their wares. Wanting a better life, a large number of them began to educate themselves.

Medieval Guilds 2
Medieval Guilds, deriving from an earlier system of pooling of gold and resources by craftspeople united by craft, quickly rose in prominence throughout Europe. They fostered professionalism with its system of apprenticeship, and the post of Guild Journeymen became the goal for nearly all freemen. This system even survived and thrived in early America, well into the nineteenth century.

Medieval Universities
In the early 11th century, a new type of guild arose, a guild of students, or ‘universitas’. These people met in their homes and churches, pooling together their resources to hire teachers to provide themselves with the best possible education. This system of education became so popular that it attracted the attention of the church and state, who formed competing guilds of teachers, who worked hard to attract paying students.

Modern Universities
Of course, we all know which system survived: by the twelfth century, there were over 100 established universities in Europe. Sanctioned by the state, it became a gatekeeper for the more lucrative professions, such as lawyers and medicine.

Modern Guilds 2
Some guilds have managed to exist into the twenty-first century, particularly in creative arts such as the Screen Actor’s Guild and the Writer’s Guild. Several other systems and organizations resemble modern guilds, such as the Bar Association and many unions.

Modern Guilds 3
I read this morning a paper by a professor at MIT that advocates a return to the medieval guild system, arguing that the twentieth century system of working for the company, with pensions and whatnot, is obsolete. In fact, the modern consultant in many ways resembles the old guild journey member, traveling between clients, working for multiple companies, and sharing their expertise and knowledge with other crafts people.

Professional Certifications
Many developers seek professional certifications, which fall into three categories: Corporate, Proprietary, and Professional. Corporate certifications exist within a single corporation, and are generally non-transferable, but might look good on a resume. Proprietary certifications, or product-specific certifications, are good for a specific software or hardware product, but are also not relevant outside that product. Professional certifications are more general, serving to increase the level of practice, and are generally industry-wide, such as the IEEE Certified Software Development Professional certification. Finally, there are some government mandated and overseen certifications, known as licensures.

Professional Certifications 2
There are hundreds of available software certifications, of dubious quality, most of which are given by the software manufacturer to anyone able to pay a buck and fool the test.

Professional Peer Review
Professional Peer Review is used in place of or to augment the value of testing. It is used in many professions, such as in Health Care, Accounting, Law, Engineering, Aviation, Forest Fire Management, and even Software Development. It has roots in Scholarly Peer Review, used in academia to determine whether an article is worthy of publication. Some criticisms of Peer Review are that it’s subject to gate keeping and elitism, it’s not designed to easily detect fraud, and can be a lengthy and expensive process.

Sudbury Model Schools
Based on the original Sudbury Valley School, Sudbury model schools are democratic, age-mixed, non-coercive environments for children. Part of the model involves certification; students are free to structure their days as they wish, but if they want to use certain equipment (such as a sewing machine, computers, or a dark lab), they must demonstrate proficiency and receive certification. In many of these schools, graduation is also a reflection of this process: students wishing to graduate will create a committee of peers and advisers, who will help guide the student through a portfolio creation, culminating in a defense of their thesis to the entire school body, who will vote on whether to award a diploma.

Open Guilds
My initial idea for creating the Drupal Guilds (as a subset of Open Guilds) came about during the development of the latest incarnation of DrupalDojo.com. Part of the initial discussions for that site included “learning tracks”, where users could flag their favorite lessons and sessions, forming “playlists” to be shared with others. I realized along the way that this could serve as an excellent form of certification.

For instance, a developer interested in learning how to present multimedia in Drupal could work through all the lessons in a specific track and come out the other end able to put their new-found knowledge to work. It would simply require people putting in the the time to oversee their education and award a certification. Considering that thousands of people already donate hundreds of thousands of hours to development and documentation, it simply requires a framework to funnel some of this expertise into an Open Source University.

Rather than a corporation coming along and offering a $500 certification test, we can create this system in a grassroots fashion, bootstrapping and certifying ourselves. Certifications would be free, with reputations as strong as the developers’ due diligence.

Open Guilds 2
The structure I propose involves allowing any person to join the Open Guilds as an Apprentice. Anyone may also join any individual Guild. Each Guild itself offers its own certifications, which are overseen by Journey Members and Masters, who, after presentations by the Apprentice and discussions, vote on whether to award a certification. The Masters of a Guild are likewise elected within that Guild.

Open Guilds 3
Finally, the creation of new guilds itself follows similar tenets: anyone may propose a new guild charter, which is determined by a majority of Vested Members of the Open Guilds. The proposed charter would state the title and purpose of the guild, as well as (perhaps) its form of governance, such as by democratic vote of all members, or the representative vote of its council of Masters.

Open Guilds 4
Vested Members would be members of the entire organization who have a vested stake (most likely determined by paying dues, and/or by the length of their membership and the frequency of their involvement). However determined, Vested Members would oversee the General Business of the Drupal Guilds and Open Guilds.

(Cross-posted at groups.drupal.org/guilds.)