Jacquin Buchanan7 Aug 2016+3
I am new to e-nable. I will start by saying, I completely understand the issue of growing pains like this. Anyone who has been involved in a movement like this knows how expectations can greatly outpace reality. Though, what little I have seen from this group leads me to belive the problems +Jen Owen is rightly pointing out will be solved.
Having said that, when I got my test hand approved only a few weeks ago. I expected to be directed to some system like what +Joe Cross has linked to. I am guessing the ECF app that is due Sept 30, is even more of this. Awesome.
I think ECF needs to think of itself as a conduit of information more than a distributer of actual hardware. It is the only way they can scale up. ECF should be a central organization that approves makers, recipients, and designs then provides ways to pair those things up. Sending hands to ECF for them to distribute will not scale. And lacks the customized build that the recipients require. Better EDF looks to Uber as a model. Makers and Recipients can be in a system just like Drivers and Riders in Uber. Makers have ratings and history attached to their profiles, so when a match is made by the system the recipient can decide maybe they don't want to work with a 2 star maker.
Where the analogy to Uber varies is ECF needs to approve and have some sort of rating system for designs too. I would treat designs like Uber treats drivers. Allow anyone to submit designs, and the approved makers can rate the designs. Therefore bad designs pretty quickly get dropped off, and good ones get picked up.
That is my 2 cents or maybe 75 cents. You guys are doing great things. Keep going.
Jen Owen7 Aug 2016+1
+Jacquin Buchanan - thank you for your input.
I think we are going to start working on a badging system. I think it is time.
Grace Mastalli7 Aug 2016
+Jen Owen I am sorry, but as some of the comments suggest, just because you and the entire G+ community do not know disposition of all devices sent to ECF does not mean that those users, makers and sponsors involved have not been or will not be informed. It is far more important to ECF that individuals with limb differences get appropriate, high quality devices and care that meet their specific needs and that their privacy be respected. As you know, once the bulk assembly event devices are shipped to ECF they undergo rigorous evaluation and in some cases repair or reassembly. Those who submit test hands that are accepted are notified as you also know. An inventory system with barcodes (thank you +Stephan Heunis ) allows us to keep track of all devices from all sources and their disposition in order to keep everyone who needs to know appropriately informed. When appropriate and recipients are willing that information be shared, this information is publicized and can be reshared. Putting current and future recipients interests and needs first, however, is of paramount importance to ECF and
I know that while you disagree with how we are doing this, that you share that value.
Attacking ECF processes and staff, and generally generating strife, however, does a disservice to everyone. +Jen Owen you chose a different path from ECF's but there is no reason not to also chose peaceful coexistence. There are enough unmet needs and unsolved problems in the world for all of us to address. Please use your strong voice and immense creativity to spark positive attitudes and constructive efforts. Thank you.
Rich Brown7 Aug 2016+1
I Am so Glad that Grace has posted. I was composing the following on word to put into the post. As you can see Grace answered some of the questions with information that has already been in progress. Perhaps we need to openly know about the activity that goes on inside ECF & e-NABLE. It will probably assure us that we are actually in a healthy state.
Before Grace's post:
The current discussion is actually healthy in my opinion. By exploring our faults objectively, we can clear the air of any differences and create solutions. The obvious is that there are multiple points of view and uncontrolled growth in a “wild west” community, without a plan to handle all of the administrative tasks that occur in the evolution of the community. Note in being politically correct and not wanting to step on feet we all have avoided what now is the obvious…slow down and spend a majority of efforts into all of the structured organization that is needed. For each problem there is a solution. We need one place, not a forum or a Google post, where all information on administration can be posted by one individual in a manner that all of the community/chapters understand.
There seems to be division that is created by the two organizations. To membership it is not clear and only causes greater communication confusion, resentment and splits.
First there is a double standard for chapters and each having different criteria unnecessarily. Just make an Institutional or Public Chapter Category for both ECF & e-NABLE...with membership in each organization, same benefits provided to the chapters.
Individuals who are qualified members should be on a membership (contributors) roll which is renewed annually to keep counts reliable. Recipients are not members unless they are contributors. Contact information of membership should include names, address, personal email, etc. and be available through ECF or e-NABLE unless marked as private but the organization should legally have this documented.
WE need to be aware of client privacy, HIPPA type regulation and quality control standards of each product created. This is only my opinion and I am sure there are members and programmers who can create a tool to assure record keeping. There is going to come a time when accountability will come from an agency outside our community.
My contribution to the idea is that each hand and model should have a serial number on one particular segment of the hand and a logistics style way to track the hand/arm. Since it appears from the posts that everything is first delivered to ECF, Inc. that is where the recorder should start when product comes in. As a starter the following can be created in a spreadsheet:
Where do hands go? HIPPA Compliant - Matcher Check List
Chapter or Maker ID # Hand SN# / Style Recipient ID # Request Date Waiver Delivery Date Therapy Guide Trainer
My chapter, small C because we have never made application to either org. to be a formal chapter has had liability as it major concern. The cost to defend a legal action is something that none of us have wanted to face, yet according to our attorneys it is real.
I presented and idea for Crowd Funding to create a legal war chest to buy a risk policy to ECF last week and was told it is under discussion. Like many things that are pending we have no updates or time reference when a project is completed. We need from both groups a place where we can look up pending or current projects and their status. Like Jen says, manpower is the issue response so let’s get the community to be the manpower. Now mind you it is obvious there are a lot of very good, wonderful and passionate people involved so let’s get together as one mind and created a list of what you think needs to be done and then let’s do it!
Jen Owen7 Aug 2016
+Grace Mastalli - I am going to try to break this down:
1. We are not asking for recipient information. We just want to know where these hands are going and where the other hands go. Asking for a simple "Recipients. Makerfaire table. School demo. SItting in the ECF storage." spreadsheet or report to show the global community where their hard work is going - is not asking for recipient information. It is asking a basic question - one which many of us have been asking for - for over a year and always get a run around response.
Where are these 750 hands going? Where are the 50 hands that were sent from the library? Where are the other dozens and hundreds of hands being shipped to ECF Going? That is all we are asking.
2. I am not attacking the ECF. There is a huge difference between asking hard questions and demanding answers than "attacking" the ECF. Every time a community member asks a question that the ECF members do not want to answer - we are "attacking" you. In your eyes.
This is not the case. We are asking a question that should be answered by your organization and may other questions that we never get answers to. We are sharing our experiences, having a discussion and hoping for answers.
If you want the community to "peacefully co-exist" then perhaps you should start communicating with them instead of telling them that every time they ask a question of you, that they are "attacking" you and then still not answer their questions.
3. I agree. I do have a strong voice and I appear to be the one that everyone turns to when they are frustrated with the lack of communication by ECF and when their questions go unanswered as well. I will continue to speak for those who are too afraid to voice their concerns about ECF for fear of being told they are "attacking" the ECF vs asking a hard question and having their posts deleted.
My voice is for the community and as you can see on this thread, there are many who are asking the exact question I brought up and would also like to know the answer - but unfortunately - it took the STRONG voice, the one that isn't afraid to speak her thoughts and ask the questions - to start the conversation. Unfortunately, over the past few years, ECF and I have butted heads and thus anytime I ask a hard question, it is immediately taken as an "attack."
This isn't an attack on the ECF - it is exactly what it is - a QUESTION that we would like answered.
Where will these 750 hands go?
What will you do with the 100 hands that are sitting in a closet that were intended for Haiti?
How many recipients are on the wait list?
Why were 750 hands made as a corporate event/team building event when we have volunteers and makers and schools who are still waiting to be matched with a recipient? Why weren't they asked to print?
Where is the spreadsheet or monthly/bi-yearly/yearly report that shows the community where all of the hands have gone? (again - we are not asking for individual recipients - just how many are actually going to recipients vs makerfaires, demo hands and the ECF stock room?)
That is all.
Jen Owen7 Aug 2016
If any of my frustrations for lack of communication from ECF has come off as "attacking" them - I apologize. It is very frustrating to ask repeatedly for answers and never get responses and my frustration certainly shows through.
Grace Mastalli7 Aug 2016
I thought I was being responsive. We report to those involved directly, our board and funders as appropriate and provide other data publicly at least annually. Providing legally and contractually required reports is very time consuming and involves confidential information.
FYI Until these Autodesk devices --parts for which were printed by an ECF partner for an ECF Funder's global event which required consistent quality on a short time frame in the neutral and flesh colors preferred by ECF's highest need recipients - are shipped to ECF, tested, fitted and distributed everyone Just will have to be patient. While it would be ideal to have enough time and talent to respond to every single request for information, we have found attempting to address some such demands to be distracting and often counterproductive.
Sadly, in the G+ community it seems unless ECF does things your way or the old way our answers disappoint you and others and for that I am sorry. We indeed are part of the community and movement but as a responsible nonprofit can only have ECFs priorities informed by facts and funding constraints not dictated by the loudest community voices. I do hope we can proceed in a more peaceful manner. I fear that your words are indeed often perceived by many as being wielded divisively more as weapons and threats than gentle inquiries. The power of your platform to be a positive force for the good of all is great. Use it well please, and consider supporting ECFs efforts to be a force for good using systems and methods different from those you prefer. I hope we can just agree to disagree about how best to accomplish the goal of aiding underserved populations of people with upper limb differences.
Jen Owen7 Aug 2016+1
+Grace Mastalli might I suggest utilizing the dozens and hundreds of volunteers who are constantly asking to help in some way?
We have numerous folks who would be happy to compile reports for ECF so that the community can be more informed.
I have many questions that will remain unanswered. Your "answers" are never answers.
I am done here. When you decide to share where hands go, I know the community will be very excited to finally learn their fate.
Drew Murray7 Aug 2016
I have to concur with +Jen Owen the default ECF answers are along the lines of "Were working on it", "It's coming", "It's confidential" yet the ECF is happy to ride on the communities effort - as clearly seen in their annual report.
Given that only 7% of our recipients have ever asked for no publicity and the ECF never seem to publish many recipient stories at all I suspect theres more than the devices mentioned by +Jen Owen sat in boxes, but hey thats for the ECF to answer; this post is NOT an attack, but a statement of debate.
Thierry Oquidam7 Aug 2016
I wish to hereby claim NOT WILLING TO BE a g+ moderator.
I totally disavow the opaque comportment of ECF and the way that any question on what it does is so conveniently considered as a threat and not answered.
ECF has turned in some kind of money making machine that (beyond personal feelings about it) are against what the original e-Nable movement is about, and is trying to take over it.
As far as I can do, this is not going to happen.
I have built e-Nable France because I loved what Ian and Jen did, and this is what all our makers bond for. My team and I are running it on our personal money. We are locally under the same questionning as +jen owen is asking, and for our own information and future development we seek answers from more experienced chapters.
If ECF with all its past is not able or willing to provide us with helpful information, I am not willing to contribute to a g+ community they obviously want to manage, whatever can be said about it.
I began building hands in september '14, if references are needed, and never stopped since.
Jon SchullYesterday 00:31+1
+Thierry Oquidam I can say with some confidence that ECF does NOT WANT to manage the community and before I left ECF, the Board explicitly encouraged me to help the community develop a system for self-governance.
That process is well underway, and it would be a shame if people abandoned this community, and it's vast repository of shared knowledge and information, just because they disagree with some of the contributors.
We're doing a lot of good, and there is much more to do.
Joe CrossYesterday 12:02+2
+Jacquin Buchanan - just to be clear, the app coming out Sept 30 is not from the ECF. It is from e-NABLE Outreach, which has no relation to ECF.
And this is the heart of the concerns being raised by many veteran e-NABLE volunteers. The Community is not the ECF. But the posts from new volunteers (and the dozens of emails Jen and I and others receive) make it clear that they do not differentiate between the Community and ECF. And despite the platitudes, the ECF is VERY happy to benefit from that confusion. Whether it be refusing to give other groups, sites and non-profits equal voice in this G+ group, claiming credit for the work the Community does, or withholding information that would allow volunteers to make informed decisions about how to contribute - the recurring pattern is not a coincidence or growing pains or lack of resources. It is an intentional strategy to use the Community's work to generate donations that pay salaries and travel expenses. The ECF 990 and Annual Report make that clear. This is the Wounded Warrior project all over again.
Instead of taking 30 minutes to read and respond to this thread, I encourage the ECF to use that time to update the G+ sidebar with a link to enablingthefuture.org, links to other intake forms and clearly explain the relationship between the Community and the numerous non-profits supporting it. That 30 minutes would help FAR more volunteers and recipients.
Drew MurrayYesterday 13:03+2
Well said +Joe Cross
Drew MurrayYesterday 16:56+2
+Thierry Oquidam I think you should become a moderator, e-NABLE France is one of the biggest chapters, your input into the community is critical and as a moderator what a better way to do so.
Jen OwenYesterday 18:00+1
+Thierry Oquidam - I agree with +Drew Murray
The only way that this Community is going to thrive in here is if Non ECF folks help to repair it.
Having seasoned volunteers as moderators is the only way I personally see this Community making the same kind of waves we have been for the past few years up until the ECF completely took this space over.
New people are still joining every day and are under the assumption that the ECF is the COMMUNITY and that needs to change. We need people like you, who know what you are doing out there in the world - to help run this space and get the side bar back to showing that the ECF is NOT the Community - so that people can find the help they need, get resources that are available that are NON ECF resources and make donations to groups and chapters that are in need of donations simply to make more hands for people in their areas vs paying salaries.
WE NEED YOU.
Jeff ErenstoneYesterday 21:10+1
I am going to try and move through a lot quickly. I am too busy helping ECF do valuable work and don't want to waste time responding to +Joe Cross and others.
But Joe's sense of history is very warped and offensive to people who have been working for this movement much longer than he has.
Yes, ECF has decided not to lead the Google Plus community anymore and Jon Schull has started a process of self governance (see pinned post). But this doesn't mean ECF is not PART of the community and it is offensive that Joe is drawing a distinction between ECF and the community at large.
Additionally, when ECF gave up the role of governance it also gave up the "requirement" to explain and post about its activities. Like every type of community a member has a greater right to privacy than the government officials. So, ECF doesn't need to explain what they are doing to +Jen Owen
+Joe Cross you claimed that ECF is taking credit for works of the community. Yet in the same breath you criticize ECF for its management of the community. In the past ECF was managing the community, so why can't it share in the success of the community??? You may not like how they managed the community but they did the work and deserve the credit. +Melina Brown alone is directly responsible for MOST of the matches that happened in the community. Most of that work was done while she was volunteer. It was a huge amount of work, and shame on you for not acknowledging it.
The people who started the ECF started this community. Even +Jen Owen was once on the staff of ECF and her website costs were paid by ECF long after she publicly and frequently criticized them.
Who are the people who developed the Raptor, the Raptor Reloaded, the RIT arm, and helped +Jason Bryant with the Phoenix? They are some of the people who are working with ECF. +Andreas Bastian is personally responsible for hundreds (maybe thousands) of design hours on these many designs, and their earlier versions.
+Drew Murray You use the Phoenix for the terminal device in the Unlimited Arm. You use a forearm that was first developed by +christian silva. You use an elbow joint that was first developed by RIT (an ECF chapter). You use a heat forming method that was pioneered +Andreas Bastian and refined by +Skip Meetze and myself. Yet you don't give any of these people credit so it is incredibly hypocritical for you and +Joe Cross to claim that ECF is wrongly taking credit. Especially when ECF has tried to give you credit for your work before you required them to remove your reference from their site. I am having a hard time thinking of something more hypocritical.
The last thing I will say here (and possibly the last post I make in response to you) is to talk about the claim of "confusion" and how it's ECF's fault. Are you sure that ECF is making the confusion? Yes there is some of the same content on the ECF site and ETF site.... but remember ECF was paying for the ETF site until recently and Jen was on staff of ECF when some of this content was made.
Since the separation of ECF and ETF, the foundation started doing design challenges. Later ETF started doing design challenges. ECF changed the icons of their home page and now the icons on ETF look very similar these icons.... http://enablingthefuture.org/ http://www.enablecommunityfoundation.org/
Let me ask you.... who is making the confusion?
It blows my mind that +Joe Cross +Drew Murray and +Jen Owen have constantly claimed that ECF is somehow wronging the community. Even in response to this post, you will likely claim that ECF and I are wronging you. I have been accused of being the ECF bully.... yet you keep on try to draw ECF into a fight and not the other way around. So who is the bully?
Why don't you follow the advice you have given in the past and think of ECF as just another chapter of the e-NABLE community and let them focus on getting work done. We have all wasted too much time responding to your attacks.
Lastly, it is not ECF's fault that they are bigger and better funded that you. They have worked harder and longer than you have. Let them get back to work and stop writing posts designed to criticize and belittle them.
Jen OwenYesterday 22:09
Im sorry +Jeff Erenstone but you have some of your facts wrong.
1. Raptor was created by Ivan Owen, Andreas Bastian, Frankie Flood and Peter Binkley. Only Andreas is on the ECF board.
2. The design challenges on the ETF website are for children/students - they are design challenges that I proposed for over a year while working WITH the ECF and they were shot down every time. Once I was no longer on ECF payroll and free to pursue my ideas freely - I have done so and they have been very successful. As a matter of fact, the first design challenge listed on the ETF website is one that I asked to do for over a year with the ECF.
3. I left the ECF in September 2015 because I refused to sell or lease the ETF website domain to them so I was let go completely and given the ultimatum that if I didn't sell/lease it - I was fired - even though I did a whole lot more work (event planning, media communications, email answering, social media, graphic design work, etc) than writing stories about the community and yep, ECF paid for the first year of the larger website fees until I took over in early 2016. Now it is funded by Ultimaker and the generous donations of Patreon contributors. I refused to allow the ECF to take control of the website for fear it would turn into a website that didn't reflect the heart of the community and I will never regret that decision.
4. The ECF benefited GREATLY by paying a few bucks a month to have the ETF website up and running (and technically - the ECF didn't pay for the ETF website - the people who donated to ECF and assumed the money was going toward supporting the community did) and to have me sharing stories from the community - as for many months there was a "Donate" button that sent people to ECF to make donations that would not have come through for them without the work I was doing on the ETF website. They sent people and sponsors to the ETF website to show off the stories of the community that I was writing about and in turn gained more donations - they were repaid WAY more than what they put in to "paying for the ETF website." It costs about $250 a year to pay for the website - they made well above that per month through donations made through the donate button on the ETF website.
5. Instead of paying me a salary - they paid me 15% of whatever they got through the ETF Donate button - which helped a little bit to pay for my time to keep working on the website but certainly not a living wage. Eventually - I got tired of not seeing any of the donations from that button getting put back into the community they were supposed to be supporting and took the button off of my website - thus resulting in complete loss of income on my part but I continued to work on the website for 30-40 hours a week without any pay at all rather than having people donate to ECF and never seeing it used for helping the community.
6. I had already started working on making the website more functional and easier to read and easier to locate information for those seeking assistance....long before the ECF website was out. You can see my requests for help and input from the Community in a few different posts:
November 2015: https://plus.google.com/115810399850545 ... ydrcNNKPqx
December 3, 2015: https://plus.google.com/115810399850545 ... 8NxPWy8RFP
7. Yes - I do agree that the titles for the "Need a hand" "Build a hand" and "Lend a hand" match the ECF but at the time of the new websites for both of us - we were still working together - as they had a donate button on my website and they were supporting mine by shooting me 15% of whatever they got per month in donations from that button. Having both websites looking similar was a BENEFIT to the ECF so that they looked like they were working together instead of two separate entities.
I am more than happy to change the names of the boxes to something else now that we are not working together any longer.
The ICONS used on the ETF website existed before the ECF was even created. The icon with the heart in the hand - was created by and turned into a TATTOO on one of Ivan's best friends (in 2014) and he then turned it into a 3D printable file for use at makerfaires. The Icon on ETF for the Build a hand box is a graphic that was made by Frankie Floods students before the prosthetists meets printers conference in 2014. The icon used for "Lend a hand" on ETF website is the logo that was used for the community since we started in early 2013. The icon used for the "About us" box - was created by me in 2014 for the Hopkins conference.
Please tell me again that these icons were created AFTER the ECF icons?
8. I am sure many of the community members take great offense to your last statement however:
"Lastly, it is not ECF's fault that they are bigger and better funded that you. They have worked harder and longer than you have. Let them get back to work and stop writing posts designed to criticize and belittle them."
REALLY? Because last I checked, I've been working on this project since my husband created the FIRST hand, have poured my heart and soul into it, spend just as many hours working as hard as the ECF folks do and FYI the ECF got the GOOGLE+ 600,000K Grant because of MY WORK sharing the stories and documenting them for the past 4 years, the VOLUNTEERS in the COMMUNITY that are actually doing all of the work that gives me material to even write about AND the hard work that +Jon Schull and others put into getting this project into the lap of the GOOGLE people.
There are DOZENS of volunteers who are working even HARDER than the ECF staff are - every single day. Your statement is quite outrageous and FALSE.
Drew MurrayYesterday 22:19
WOW just WOW, that post by +Jeff Erenstone is by my definition is going ALL in, well never one to shy away let me join in.
GRAB YOUR POPCORN AND PULL UP A CHAIR FOLKS !!
I HOPE ONCE THE SELF MODERATING IS IN PLACE AND THE COMMUNITY / CHAPTER STATUS IS RESTORED THAT THREADS LIKE THIS WILL BE A THING OF THE PAST.
"ECF has decided not to lead the Google Plus community anymore"
I dont ever recall the ECF asking the community if it could take over the community - this always has and always will be one of the greatest mistakes when the ECF founded ITSELF.
"But this doesn't mean ECF is not PART of the community"
I totally agree the ECF is one "Chapter" amongst many more, when the ECF took over the community the ECF stripped the community links from google+ group in an attempt to "Convert" it into an ECF entity WITHOUT THE CONSENT OF THE COMMUNITY.
"when ECF gave up the role of governance it also gave up the "requirement" to explain and post about its activities"
So the ECF might as well leave the community then; after all you have nothing to explain or activity to post.
"In the past ECF was managing the community, so why can't it share in the success of the community?"
Plain simple - it NEVER ASKED THE COMMUNITY.
"Yet you don't give any of these people credit so it is incredibly hypocritical for you"
100% totally and utterly untrue, the bottom of our releases credit the sources. We have also
been in contact with and shared our work with everyone we have developed with or taken inspiration from. Also we never used anything from the RIT arm, maybe at a push it could be closer to the raptor wing.
"constantly claimed that ECF is somehow wronging the community"
Correct and they have, they offer no help despite stating they "support the community" - HOW, TELL ME HOW THEY SUPPORT THE COMMUNITY ?
"ECF has tried to give you credit for your work before you required them to remove your reference from their site"
Obviously you fail to see why this was requested, its simple, the ECF DID NOTHING TO HELP US, they did not ask permission to pass off our work without CORRECT ATTRIBUTION in the ECF report.
Instead the ECF tried to pass off our work as that of 2 individuals and not crediting us as a "Chapter" - you know as in the very thing you are now saying the ECF is ?
"Why don't you follow the advice you have given in the past and think of ECF as just another chapter of the e-NABLE community"
Glad to do so, once the COMMUNITY has been re-established, the links to Chapters made available on the community g+ page and the ECF re-images themselves as NOT the e-NABLE community but a chapter of the e-NABLE movement.
"it is not ECF's fault that they are bigger and better funded that you."
WOW, just WOW is this the level we are at "my dad's bigger than your dad ?"
Now bigger is a relative thing, in terms of money yes the ECF has won big grants, but what success have you had with that then ?
Have ECF iterated and delivered a design that has really pushed things on - NO.
Have ECF done anything with the community that created this movement - NO.
Have the ECF received HUNDEREDS of devices that are sat in boxes doing nothing - YES.
From the inception of the ECF and when they won the google grant the ECF has to perform to its sponsors and thats fine, JUST DONT DO IT OFF THE BACK OF THE COMMUNITY.
+Jeff Erenstone I know your the single recognised professional around here and that your professional advise is of massive value to the community, but replaying fiction as fact is not the way to bring value to your opinion.
+Jeff Erenstone +Jen Owen +Jon Schull +stephen davies +Joe Cross +Thierry Oquidam