Wednesday, June 13, 2012

The Silencing: FAQs

Edited on 6/14 to add: There is now a petition up on change.org asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. If you agree, please sign and share. Thanks!


This will be brief, as we are all sick (literally, not figuratively).  As I mentioned on the blog's Facebook page today, "I just realized that due to a) the fast-breaking nature of this news story and b) the fact that Maya is home sick (day 3), she has the rare and distinct honor of being viral in 2 ways at once." 

First, thank you to those who have tweeted, retweeted, blogged, written about, shared, and posted my last blog piece to Facebook.  Special thanks to those who have reached out to PRC, Apple, and SfY.  We appreciate the support that you are showing to Maya and the other users of Speak for Yourself.

Second, there have been many kind suggestions of alternate programs and systems of communication that we could try to use with Maya.  It's important to know that the success of AAC is highly dependent on the user's ability to embrace the system-so while I'm about to explain why a few of them as "not feasible for us" that does not mean in any way that I feel that these are inferior systems.  They just didn't work for us.  First, Proloquo2Go was the first iPad app that we attempted to use with Maya, and while it was a good introduction for us into AAC, it proved to be not a lasting solution (primarily due to the organization of the vocabulary in folders, and also because the vocabulary symbol set was not as clear for her).  Next, we looked into Dynavox devices at the same time that we looked into PRC devices (November 2011).  Again, the devices are great for some people, but were not a good match for Maya (primarily due to the folder & tab system of organizing the vocabulary).  Finally, sign language.  ASL is a beautiful and meaningful language for many people, and Maya does know a number of signs that she uses with Dave & I.  However, due to some dexterity/fine motor issues, her signs are garbled . . . even someone who speaks fluent ASL would have to do a fair amount of guessing to figure out what she might be attempting to sign.  Additionally, I am a big fan of the way that AAC lets her speak to anyone (who understands English) anywhere, without a translator.  Other four year olds can understand the talker, but they likely would not understand her signs.  That's important to me.

Finally, I've gotten a good number of suggestions as to how to protect our copy of Speak for Yourself.  We've taken the following steps: I have backed up the original app file onto 2 hard drives.  We have two iPads that carry SfY-one is Maya's designated device and one has been used for other things but carries a back-up copy of the app.  Both iPads have had the wireless disabled and airplane mode turned on.  One has an AMDi protective case, the other has a Griffin protector, so hopefully they'll both be durable enough to last for a while. (When the primary user of your device is a four year old, durability is a real concern.)  I still have concerns about the fact that if the iOS is updated in a way that makes SfY incompatible with the new operating system, we will only be two broken iPads away from being left without Maya's communication app.  Additionally, we are left hoping that the app doesn't end up needing any repairs or updates, because we are now unable to receive them.  I am unsure as to whether there are any other steps that I could take at this point to protect what we have.

We feel very fortunate to have obtained Speak for Yourself prior to its removal from the iTunes store, and we are frustrated and saddened on the behalf of the other nonverbal children and adults who could be using this app to communicate with their friends and family but are now unable to download it and determine whether it would be a good solution for them.

One more thing, we appreciate the emails, tweets, and Facebook messages, truly.  At this time, I'm receiving a good number of incoming messages and cannot respond to them all quickly.  I'll do my best to get back to everyone, but I am sick, pregnant, and have a sick child.  It's going to take a little bit of time, so thanks in advance for understanding.

Tomorrow I'll try to put up a links round-up of the news articles, etc. that have gone up about the story.  Thanks again, everyone!

16 comments:

The legend that is said...

Just a heads up. I know it is not exactly a legal way of going about things but even if Apple do update the iPad or your two break and have to be repaired and come back updated or you have to get a new one, you should be able to jailbreak it (hack it) back down to an older edition of iOS and then install the app. There are many guides online that you can find with a simple Google search. I don't exactly condone this method but in this case I think you would be completely justified to take this route if you needed too. I have spent five years working with special needs children and understand completely how hard it is to find a solution to language barriers. Every child is different and each needs a solution that they are comfortable with. There is certainly no "one size fits all" solution when it comes to these types of things. I wish you all the best of luck and hope you all get better soon!

Just the Tip said...

I have personally recommended SfY to quite a few non verbal children in the past few months. Based solely on your blog and how i've seen M use it.

I hope they can get something figured out. It really is truely sad.

Break the greed said...

"Emulation is the key", one of my last OS instructors at college told me that. Find a way to emulate an iOS filesystem on a tablet, make an image of your current device, use a tablet that CAN NOT BE UPDATED WITHOUT YOUR EXPRESS PERMISSION, and save the image on several external devices, a disk, network storage, internet storage and any other type of safe external location you can find (Try to stay away from flash memory, to spite what people tell you it does have a half life.) I would recommend using a *NIX operating system on your tablet. Quick warning, it will be pretty transparent to Maya, but it will be far more complicated for you. Prepare yourself and do a little research on SmallProc Virtualization, You'll want to use something Citrix based and a very light version of *NIX (I think NetBSD has something for the Tablet now, I installed that on a toaster once, should run your virtualization pretty smothly.)

Anonymous said...

Hello sir.

First I'm sorry to hear what has happened and I wish that you get to keep the application. I hate corporations and I hate Apple.

Second however; if you tell me how this application works I'll do my best to create a open source version for you and all the world to use :)

If you're willing I can provide my contact information.

Endre StĂžlsvik said...

Hack the iPad and crack the program, *of course*. Google "Cracked apps" and "installous" for pointers.

I would not have thought twice about it. Or, rather, I'd thought multiple times about it, and flicked an imaginary finger to those three companies every single time.

While I obviously do see the bigger problem here, YOUR problem is easy to fix. But, of course, there will be no more updates to that program.

Cathain said...

Have you considered putting up an online petition? Change.org is a good site for that. Perhaps if the companies involved hear a public outcry through the petition, they will see how important keeping this app is to Maya. Other companies have been influenced by petitions, so we can hope...

Merlin said...

As for the iPads breaking - don't worry too much about it right now. When you buy a new iPad, you'll be able to transfer the app to it. Also, if iOS6 doesn't break this app, it's 100% certain that until the end of 2013 you'll be able to buy new devices which will work with the app.

All in all - you've got 1,5 years minimum before there is a danger to an app, and more realistically - 4-5 years before there will be any problems. It's a plenty of time for other solutions to appear. Remember that the rest of the world doesn't have software patents, so there will be SfY competitors popping up in other countries for other platforms.

Having said all that, it's a shame what Apple did, and I wish you good luck.

Anonymous said...

Doesn't Medicaid cover AAC devices in your state? It does in many states. Of course, it requires that your daughter be assessed first and the specific device be recommended by a Speech Language Pathologist and maybe even prescribed by a Dr as medically necessary but, if you haven't done that, you should.

Alister Wim Macintyre said...

I hope you are aware of Google Plus, which is a social network with a high volume of geeks and professionals. There is now a #MayasVoiceApp group seeking to develop an Open Source alternative which would not run afoul of the Intellectual Property difficulties.

Kelvin Williams said...

Thanks Alister for talking about us! If she searched the #MayasVoiceApp or #TeamMAYA hashtags on Google+ she'd get one heck of a surprise wouldn't she?

We understand your reluctance to change something that works. But you don't have to. We've extended invites to you to help us build a replacement app that has every single feature/ability of your current solution plus to help us add some features we feel are important and other/alternative interfaces.

Hope you join us in a Google+ Hangout so you can see how dedicated we actually are to this project.

PS. It's not just the fact that we are Open Source developers that you don't have to worry about another Patent-Temper-Tantrum removing your use of the product, we're actually developing this application in a country that has little or no respect for Patent arguments, and on a platform that doesn't require a blood-oath to one App store. :)

recyclin' mama said...

WOW... I feel like I have been living under a rock! I just found out about all this craziness! I feel ( as I am sure you do) that I have been stabbed in the heart! Our 8 yr old non verbal son just received an ipad, sfy app, the amdi case from our school district. He immediately caught on to the Speak for Yourself app. It was been a heart warming experience to hear what our son has been thinking all this time. I am sickened by the thought that he along with others are caught up in the middle.. our children have a right to speak for themselves. I pray this will get sorted quickly for the benefit of all nonverbal people everywhere~ Julie T.

Ed Burnette said...

Dear Dana, your story has been so moving that I would like to help make sure there is no way your little girl's voice can be taken away again. I think the key is moving the app over to Android. Please email my Gmail.com address (ed.burnette@...) if you'd like to talk more about it. Good luck--Ed.

Anonymous said...

If, in fact, the SLP's have begged, borrowed, and stolen from PRC, how will ASHA's ethics committee treat this? Is it okay to steal, in the name of best practice?

Brian said...

unfortunately technologies that make technology accessible (screen readers/etc) or are used for adaptive strategies like SfY's competitor are BIG business, if you need it you will literally put yourself into the poor house to get it. why do you think suckers will pay 1100 bucks for jaws then shell out an additional 900 bucks for a screen magnifier when there are 100% free options from the open source community . when someones corporate slogan is "were here to help make your life better" chances are you'd better have deep pockets!

Dana said...

Thanks for the feedback & suggestions!

To the tech people & Google+ team: I will confess that I don't know much about Google+ and have never been on it, but I sincerely appreciate your interest and dedication to helping! The best people to reach out to are the SfY team, who know about the technical end of this stuff (whereas my knowledge basically ends with charge-the-iPad-and-turn-on-the-app).

To Anonymous 6/14 @ 2:56pm: We do not have Medicaid. If we did, a device would likely be covered, but that is a moot point, as none of the devices that we looked at are as good of a fit for Maya as this app is.

Julie T--I hope that this gets worked out, for all of us!

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