e-NABLE’s Emerging Infrastructure
Jon Schull, May 2018

Last August, the essay “e-NABLE at 4 and 10,000: Now what do we do?” summarized our history and hinted at our future:

The traditional organizational response to growth is to develop hierarchical authority structures…and become a traditional organization.  We tried that once; we might try it again. But maybe…and this is what I am most excited about…maybe we can thrive by embracing the fact that we are not a traditional organization.

e-NABLE is now a network, not just of passionate individuals, but of “chapters” in over 80 countries.  Chapters are large enough to make a real difference, but small enough to empower individual members, cultivate mentors and leaders, and organize themselves as they see fit.  Because they are localized and diverse, chapters can develop locally appropriate solutions and specialties. And with the right infrastructure of “internet communications, 3D printing, and good will,”  chapters can complement each other and share stories, solutions and values.

So what kind of infrastructure do we need?  One that supports and develops autonomous chapters unified by shared values and shared designs while supporting collaboration,  innovation, sustainability, and collective intelligence among individuals and chapters.  

That infrastructure is emerging.  In this article, I want to document and highlight components of our infrastructure that are visible and active, albeit incomplete. Because we’ve learned that false expectations can be toxic, I’m putting “Anticipated Developments” in a postscript until they are visible on the web and functional. 

Matching Makers to Recipients.  

There are two dominant patterns these days.  

The mostly local, individual pattern.

  • An individual or a chapter develops a reputation.
  • A recipient contacts them
  • The individual or chapter members develop a solution
  • The recipient receives the device, (and the equally important goodwill)
  • Chapters and local media celebrate the event, further building the chapter’s and e-NABLE’s reputation.

The mostly global (and emerging) pattern.

  • Prospective recipients and volunteers register with e-NABLE Web Central, identifying their needs and offerings.
  • Recipients use the site to find volunteers eager to help.
  • Volunteers use the site to join  to find recipients and teams in need of their skills.
  • A team of volunteers plus recipient coalesces.
  • They use the site to select, customize, fabricate, and track a device.
  • They get the job done and (soon, I believe), make pictures and follow-up data visible through the site.

These two patterns reinforce and complement each other.  The creators of e-NABLE Web Central (long time e-NABLE volunteer Jeremy Simon and Aleks Jones, partners at 3D Universe) are adding chapter and case-management features to EWC on a near-weekly basis, as well as a, “In-person” mode  so a volunteer/chapter can setup a recipient/device request and enter all necessary information without the recipient needing to login to EWC

These features are  turning EWC into a valuable repository ot case data for followup research.

Which brings us to another emerging piece of Infrastructure.

Research

The e-NABLE Research Group and the Human Subjects Pool

There are dozens of academic articles written about e-NABLE and 3D printed prosthetics, but there is a serious lack of aggregate data on e-NABLE activity, and information about experience with e-NABLE devices after delivery.  

An e-NABLE Research Group led by Jen Mankoff of the University of Washington has now established an e-NABLE Human Subjects Research Pool, with approval from the UW Institutional Review Board. A months ago ago, EWC began inviting registered device recipients to make themselves available for researchers, and the pool has begun to grow. The e-NABLE Research Group wwe page at http://e-nable.org/spc/e-nable-research/ has links to information about the poo,l and guidance on developing and getting funding for research proposals (whether undertaken by academics or by citizen-scientist e-NABLErs).  

Research-relevant programs the of ABPLS, e-NABLE Alliance

The Alliance for Project Based Learning Solutions, Inc., (APBLS, aka “Enable Alliance”), designated a 501(c)(3) in June 2017, was founded by Maria Esquela, Ivan Owen, Peter Binkley and others to support and grow resources for the global e-NABLE community, promote use of e-NABLE’s innovation methods to address individual and community problems local to volunteers, advocate for citizen science and scientific practices that would highlight the integrity and quality of work in the community.  

Its major public contribution to date was the Enable Alliance Retreat, workshops and conference at the University of Maryland College Park December 14-17, 2017, where 5 new devices were unveiled and their fabrication and testing data discussed at the conference: the improved Gripper Hand (Skip Meetze), three versions of the Promimetic Arm (Christian Silva), the Kwawu Arm (Jacquin Buchanan) the Frog Exoskeleton model (Peter Binkley), and an experimental leg (Christian Silva). We also had an outstanding demonstration of a myoelectric hand design (Marymount University).  

The Enable Alliance has other research-relevant plans going forward, including the formation of an Institutional Review Board for Human Subjects research and a Citizen Science Journal.

Projects and Project Support

Support for projects is in fact available.   Thanks to a gift of $50,000 from Google.org (as well as donations from Rochester Enable Limited and a few generous individual donors) the Enable Fund still has around $10,000 in funding above and beyond money the community earmarked to support EnablingTheFuture.org.  

As shown below,

decision-making is done by the community using eNABLio, a Loomio forum where e-NABLE members propose, develop, review, critique, and vote on proposals.  https://www.loomio.org/g/z6anwdt7/e-nablio   Then, we use the Open Collective Platform (a spinoff from the same group that developed Loomio) to process, and document  invoices and receipts for approved projects. The Enable Fund resides at http://https://opencollective.com/enablefund; at the top of that page is displayed the estimated annual budget (based on the previous year’s expenditures); near the bottom of that page is the total amount available.  Below that is an enumeration of every donation and expense processed through the Fund, as well as (a) a form for submitting invoices or receipts for reimbursement of approved projects and (b) a form for making additional donations.  (Feel free!)

Around a dozen proposals have been put up for votes and about half approved.  

 As explained on E-nablio, the current threshold for approval of a proposal is “at least 15 votes with at least 80% of the votes in support of the project.   This number of required votes may increase in the future, as participation in this process grows stronger.”  And how will such changes be instituted? Using e-NABLio (check it out!). (To propose or vote, you need to join Loomio and the e-NABLEio forum.  All e-NABLErs are welcome. )

This system (e-NABLio, and the Rochester Enable Limited Open Collective Platform) is a project of Rochester Enable Limited, a newly-approved 501(c)3 founded by Jon Schull and Skip Meetze.  We currently host the e-NABLE fund, the Rochester e-NABLE Lab, and the Honduran Chapter Guala–Manos en Accion.  We are working to make the platform available to other e-NABLE chapters to encourage donations by external funders like Google.org, and by chapters with discretionary funding.  

A related system for funding and fiscal sponsorship of e-NABLE chapters is also being developed by Enable Alliance (see Anticipated Developments). Whether these systems should, or will converge, remains to be seen.

Strategic Planning Committee
(and governance, or the lack thereof)

It’s interesting to note that these new utilities (Enable Web Central, the e-NABLio/OpenCollective System, the projects of the Enable Alliance) have all emerged as contributed initiatives, developed independently for the good of the community by 3DUniverse, Rochester Enable Limited, and Alliance for Project Based Learning, respectively.   How does this happen?

The Strategic Planning Committee has been around since the early days of e-NABLE.  The SPC (a self-selected small group of committed e-NABLErs) meets once a week and reviews current projects and issues, and publishes notes a recording of the entire meeting to the Google plus community.   Occasionally the SPC also puts proposals up for voting on Enablio. We’d welcome additional “committed regulars.”

In my view, the SPC is more like an oversight committee than a governance body.  If substantive decisions need to be made, we put them before Loomio. If work needs to happen, one of us may  take it on, invite someone else to take it on, or suggest that someone propose a funded project.

On “do-ocracy”

There’s a word for this kind of thing:  “do-ocracy“: ” an organizational structure in which individuals choose roles and tasks for themselves and execute them. Responsibilities attach to people who do the work, rather than elected or selected officials.”  Do-ocracy can arguably maximize independent initiative and belonginginess without incurring the administrative burdens of full democracy.  This seems to be e-NABLE’s modus operandi.  To quote  Meatball wiki,  people are often happy “to let someone make the final decision provided they understand why that decision was made and that it was the best decision for the best reason.”    

A potential pitfall of do-ocracy  is “Tyranny of the Proactive“–the tendency for dominant do-ers to overshadow others potential leaders.  The counterbalance to this is transparency, communication and open-ness to new participants.  If you think more of that is needed, please speak up! (or submit a proposal to E-nablio)!

Online Venues

Our community is both blessed and plagued by a diversity of online meeting places.  Here is a guide.

EnablingTheFuture.org

EnablingTheFuture.org is the pre-eminent e-NABLE website.  Owned and operated by Jen Owen, it (and she) is editorially independent, with support from the the EnableFund.

Enable Web Central

Enable Web Central “matching system” was created in the last year by Aleks Jones and Jeremy Simon of 3DUniverse.com.  It currently boasts about 1700 participants.

There is a detailed and evolving road map at https://www.enablewebcentral.com/Pages/WhatsNew

e-NABLE.org

A nexus of the e-NABLE community with web pages dedicated to e-NABLE’s Strategic Planning Commitee,  the e-NABLE Fund, the e-NABLE Newsletter,  and e-NABLE Research Groups, e-NABLE.org, aspires to aggregate and information from all of these sites.  (see Social Stream, and Media Map), in beta.  Maintained by Rochester Enable Limited.

Re-NABLE.org

Website for Rochester Enable Lab at Vertus school, maintained by Rochester Enable Limited

Countless Facebook Groups

There are close to 100 facebook groups and pages affiliated with e-NABLE Chapters and such.  http://www.facebook.com/enable.all attempts is intended to aggregate them all and serve as the feeder to the e-NABLE Social Stream, which aggregates public-facing posts from facebook, twitter, etc..

Real-World Conferences.

Democracy and do-ocracy depends upon trust.  Trust, in turn, depends upon personal relationships and interactions.  This one reason why people meet.   

So offline (that is, real-world) meetings are part of our emerging infrastructure, as well. There is no substitute for face to face gatherings, especially for a hands-on community that is so  grounded in human connection.

e-NABLE’s “Prosthetists Meet Printers” conference at Johns Hopkins in 2014 was a critical event in forging our relationships and community.  I suspect that our failure to meet in 2015 and 2016 contributed to strife experienced in 2016.

Dec 13-17, 2017 APBLS hosted EnableCon2017 at the University of Maryland College Park from Dec. 13 – 17.  This marked the 5th anniversary of the day when the the first Open Source prosthetic hand was gifted to a small boy in South Africa. The confernce theme was “State of the Science, Technology and Our Community.” Leadership and skills development allowed participants to reflect on the strengths, resources and needs in the community. The conference began with the opening of a gallery of images from the past, and a map of nearly 700 chapters and volunteers in the community. Attendees experienced demonstrations of Web Central, bionics work at the Marymound University student chapter, and the perspectives from one of the founders of eNABLE Sierra Leone.A full day of presentations and workshops identified bedrock skills and structure for the community. It included a review of the 12/17 release of FDA guidelines for 3D printing medical devices by FDA representatives, a review of IP and printing prosthetics by Shapeways, discussion of field opportunities and partnerships, and the introduction of 5 new devices to the community. Planning on 12/17 identified key dates for 2018 goals and launched several working groups, including Recipient and Family Advocacy, Youth Volunteer Advocacy, and Devices R & D.

Organizations (Legal Entities)

A key point of this document is that e-NABLE is a diverse global movement and an ecosystem, rather than a unitary organization.  But that ecosystem does include several registered non-profit corporations whose key purpose is to advance e-NABLE’s mission.

Rochester Enable Limited.

A 501(c)3 non-profit created to support the Rochester e-NABLE Lab at Vertus High School and to advance the global movement.  Maintains the e-NABLE.org website and adminsiters the EnableFund. Founded by Jon Schull and Skip Meetze. See http://re-nable.org/about-re-nable/

Enable Alliance

The Enable Alliance is the trade name for The Alliance for Project Based Learning Solutions (APBLS). It is a Maryland-based nonprofit with 501(c)(3) designation founded by Maria Esquela, Ivan Owen and others in the summer of 2016. We started the Enable Alliance to develop and maintain and share resources in the global e-NABLE community, promote scientific practices and lifelong learning that would make it easier for one person to help another and make the community more sustainable and resilient.

See http://enablealliance.org/

Conclusion:

e-NABLE is a movement, not an organization.  Whereas Organizations are  coordinated by rules and policies set by a central authority, movements are held together by shared values, ideas and practices.

Conclusion

e-NABLE’s values, ideas, and practices were apparent in the banner on the first, supposedly self-organizing e-NABLE map, and in the practice urged upon its viewers: “put yourself on the map!”

Our challenge- and maybe we are rising to meet it–is to develop a voluntary, multi-faceted, multiply-administered, voluntary infrastructure that reinforces and preserves what makes e-NABLE special.