April 5, 2010

Making weird cool

Despite my past work as an IT guy, it is an undeniable fact that I am not much of a technical person. It's worth noting that I did Mac support in the past, after all, and during the scary year and a half that I had to provide support for both Macs and PCs while at the Yale Med School, I mostly brought people skills to the table. I was pretty bad at the tech side of it, but I worked with nice people who were always ready to help me. So yeah, I was awful. I needed a lot of help.

It would be silly, then, for me to pretend that I had much to add to the tremendous amount written over the past week or so about the new Apple iPad. (I will say that as an ebook reader, I thought it was brilliant, even without digital ink, and I can see now why the Amazon folks have been such babies about the whole thing.) But there's one aspect of change that the iPad presents that I haven't read much about which I do think I can comment on, and that's in the field of assistive technology, specifically alternative communication.

Week before last, Schuyler and I attended an extraordinary AAC workshop at Vanderbilt University's Peabody College in Nashville. During the discussions over the two-day period I was there, it became clear to me that even in the past few years in which I've gone from a pain-in-the-ass parent to a published author and advocate (and yeah, a pain-in-the-ass parent still), the AAC world has changed. The basic concepts and the language approaches have remained constant, but both the technology and the design philosophies have advanced dramatically since 2005, when we first came on board.

In both those areas, I think the iPad has the potential to be a game changer for AAC. More than potential, actually. I think that for ambulatory users like Schuyler (which includes the huge population of individuals with autism, too), the changes being heralded by the iPad are inevitable.

The technical reasons are clear enough. The iPad uses the same touchscreen technology as Schuyler's speech device, so it's familiar. But it also brings a multi-use advantage, it gives her easy access to internet and ebooks and, well, everything else that has been well-documented by all the iPad hype. And that leads directly into something harder to quantify but still wildly important: the social piece.

Shortly after my book came out, we travelled to the American Speech Language Hearing Association's 2008 conference in Chicago, where I had the pleasure of speaking with Richard Ellenson. Richard was a successful ad executive and designer whose own son has severe verbal limitations due to cerebral palsy. When existing speech devices didn't work out for his son, Richard developed one that focused on fast, effective communication. The resulting device, the Tango, changed the way people thought about design and social integration of AAC for young users. The Tango wasn't particularly earth-shattering as a speech device, but its innovative design made it fit seamlessly into a contemporary kid's digital world.

"If you walk around this hall, you'll see a lot of impressive and wonderful innovation," Richard said to me at the ASHA exhibit hall. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"

AAC developers have been figuring that out. Schuyler's current device, her beloved Pinkessa, is a good example of the principle, and her enthusiasm for her device usage jumped considerably when she got it. But the iPad takes that social integration piece and marries it to a leap in technology and information access and, yes, to COOL. To you and me, cool is a pleasant luxury. To kids with disabilities, cool is elusive, and a powerful motivator.

If you know anything at all about AAC, you're aware that other big thinkers are way ahead of the game. One innovator I met in Chicago on that same trip is Samuel Sennott, and we've remained friends ever since. Sam developed an AAC app for the iPhone and iPod Touch called Proloquo2Go, and even when it was first released, it was clear that when the iPad came out, this app would be a natural fit. The moment the first iPad was sold, Samuel was ready to turn it into a Big Box of Words.

Schuyler's been playing around with Proloquo2Go, and she's shown some intuitive aptitude for it. We're all about giving her different and multiple options for communication, and we have been all along, even before we found AAC. Proloquo2Go may very well become one of the tools she uses regularly. But after five years with Schuyler's Big Box of Words and then Pinkessa, we remain deeply committed to the Prentke Romich Company and to Unity, the Minspeak-based language system that their devices run and which, I believe, gave Schuyler her chance at the kind of life where her monster doesn't get to call the shots and write her story for her.

So if I woke up tomorrow and found myself suddenly running PRC, the very first thing I'd do would be to develop an app for the iPad that would run Unity. I'd sell it on iTunes, and I wouldn't sell it cheaply. I'd do this because I would know that even if I sold it for hundreds of dollars, people would buy it, gratefully. Not every user, certainly, or even most of them. PRC's devices facilitate use by just about anyone, and I suspect that many of their users, perhaps most of them, are not ambulatory enough to use a iPad. Schuyler's device is ready to be used with a wheelchair mount, a head switch, an eye gaze system, or any other number of facilitations for varying degrees of disability. Companies like PRC will continue to make and sell their amazing devices because they are changing the lives of people every day, and giving them voices.

One day, and perhaps not that long from now, those users will want integrated devices, too. PRC already makes a speech device/PC hybrid, and I suspect other manufacturers do as well. But as of now, for the users who are ambulatory and capable of using a device like the iPad, there are suddenly options, not just to communicate and to be able to afford an AAC-ready device without third party funding, but also to join the rest of the world in using some very cool technology and subsequently being, in a tangible way, part of the very cool crowd.

Trust me, that option for coolness means more to people like Schuyler than it does to you and me.

30 comments:

Leightongirl said...

Wow, yes, a reason to love the iPad and all else. Thanks for the amazing post. Evan had a Tango, briefly, and I loved it. So intuitive, so beautiful, so compact and such great thought that went into it.

Gwen said...

One of my first thoughts when the iPad was unveiled was that it could be so awesome for Schuyler and other people who rely on AAC, especially kids. I hope PRC sees things the same way.

appletreetech said...

You should check out proloquo2go. It's an iPod/iPad app that is exactly a AAC device.
You can learn more at http://www.assistiveware.com/

Rob Rummel-Hudson said...

Um, did you actually read this entry? Like, the part where I talk about Proloquo2go?

Ami said...

Hey Rob. We really liked the Proloquo2go this last fall when we got to try it out on an ipod touch...but the ipod and the ap where a bit too small for her fingers to find accurately and consistantly, so when the ipad came out I had the exact same thoughts for Proloquo2go! We're trying to get one for ourselves...wish us luck!!

Anonymous said...

You know why I am going to by an i-pad and proloquo2go?

Because as much as I love the AAC devices from the big companies, I can't afford them. My daughter's school is convinced she'll never be able to use one, so we can't get a loaner.

How will we ever know if she can use one if she doesn't have access to one?

So I will cough up the $500+ and give my daughter something cool and hopefully a way to communicate with the word.

Proloquo2go is giving the potential of affordable communication to a whole lot of us that are frustrated and stymied by the systems in place at the moment.

Communication may be within my daughter's reach at least. She may never really get it, but I will not worry that we never tried.

R.

Anonymous said...

We started being Beta testers of Proloquo2Go about 5 months before it was released.
It is an awesome program, especially for ambulatory people with good fine motor control. My daughter really likes it, but because of cerebral palsy, she can't use it independently like she can her Vantage. But, for times when we are out and about, it's so nice to have something so small and so 'normal'. An iPod or iPad with Proloquo2Go may not be our daughter's main device, but it will be a compliment to her Vantage.

I love that things like the Proloquo2Go puts the power back in the hands of the user/parent. I have read about parents who bought it for their child because they were tired of being held hostage (like you were, and us too) by an insurance company thst would not pay and a school district that did not believe. The iPod or iPad with Proloquo2Go will still be out of the reach of some people, but it's much easier to raise the money to buy that than the $$$$$ money to buy a dedicated device.
SueM

Karen said...

I've been thinking those very same thoughts over the past month myself. Have you been in touch with anyone at PRC about this? I'm sure they're all over it, and working hard as we speak, but still. Someone high profile like yourself needs to reinforce the need for it.

Niksmom said...

Rob, I have been eagerly waiting to get your take on the iPad and the apps for AAC such as Proloquo2. You didn't disappoint! :-)

My son just got his "green talker" (Vantage Lite) and it is already facilitating tremendous changes in his ability to communicate. Right now, though, he has to rely on the key guards to help guide his poorly controlled fingers (and to keep him from resting his entire hand on the screen, rendering it inactive/"confused"). He also has poor visual scanning skills so the motor planning aspect of PRC devices is great for him.

Today, he isn't aware of the social implications of his AAC device but I know the day will come and I hope that he is able to make the transition to something like the iPad technology.

For anonymous whose daughter's school thinks she'll never be able to use an AAC device? Contact PRC directly; you can find the contact info for your local rep on their site (prentrom.com). Ask them how you can do a trial to see if it would be appropriate for your daughter. That's how we ended up determining our son could use one. His old school kept pushing PECS and single switch devices which were meaningless to him. We were able to do a significant trial with a couple of devices before we settled on the Vantage Lite. Good luck!

Kasy Allen said...

My little one has mild congenital bilateral perisylvian disorder (CBPD). His fingers curl a bit, but for the most part his disability is in his speech. That's why the Proloque2Go was a perfect fit for us on the iTouch. I posted on a mother's forum that I needed something "cool" for my kid (of course not expecting to get any replies)and one mother introduced us to the Proloque2Go. It really was our solution for making weird cool. I just hope that it stays cool in middle school!

TheRextras said...

Not seeing any pretense or silliness in this post. Very helpful, Rob. Thanks.

Rob Rummel-Hudson said...

Um... Thanks, I think?

Pia said...

Hmmmm.... so the Jman is only 3 and we are starting to get a few consistent words (not intellegible to anyone but us) so AAC tech was not something I was ready to pursue as a stopgap between his current level of language use and his hoped for development (apraxia aside). The cost was a bit prohibitive at this time, especially given his age. BUT, I was thinking of getting an IPad for me anyway.... and now that I know it would run Proloquo2go.... it might be a done deal. Who knows, it might just what heeds...

Thanks Rob

Karen said...

Most of the comments left so far are about the tech, the programs, etc. I hate to interrupt that discussion, but I have to comment on the Cool factor you discussed in your post. I 100% agree with you that Coolness is a powerful factor in the lives of disabled kids. Sure, as parents we strive to teach our kids it's okay not to fit in. But being able to fit in is almost as basic a need as food and shelter for a pre-teen or a teen. At that age, it's the difference between surviving and living. So let me add my kudos to the inventors and inovators who are bringing Cool to the world of the disabled. It is so much appreciated.

Samuel Sennott said...

Rob,

Nice message!

We are so thankful to the grassroots community that has rallied behind the new Proloquo2Go AAC system for the iPhone, iPod touch and the iPad.

We are people who care, serving people who care.

One important point is that Proloquo2Go is trying to bring the story of AAC into public awareness. Being in USA Today, http://www.usatoday.com/news/health/2009-05-27-iphone-autism_N.htm and on the front page of the NY Times, http://www.nytimes.com/2009/09/15/technology/15speech.html certainly has created an explosion of interest. It is terrific to see how many people who have never heard of or could not afford AAC are now getting access to it through Proloquo2Go.

Thanks for what you do everyday to bring AAC into the light of public knowledge.

Proloquo2Go is fully running on the iPad, not just sized up 2x.

Best Regards,

Samuel Sennott
PhD Student, The Pennsylvania State University
Co-creator of Proloquo2Go

becky said...

As a parent of a 6 yr old girl who has speech apraxia and uses a Dynavox V, I totally agree with what you're saying. (love the last sentence of your blog entry)
Sade is gettting to the age where she is self consious, and the bulky and awkward looking dynavox draws attention to her and she has stopped wanting to use it in public places. Fortunatly she knows a good amount of sign language, but I really would like her to get back to using her AAC device. We are really considering getting a ipad for her. She would then once again be the "cool kid" and at that age, cool is what matters to her :-)

Jeanine said...

Cool, indeed!

Instead of trying to make the BBOW invisible, it becomes part of the normalized rectangles of technology that everyone is carrying around.

How freaking cool is that - excellent post, Rob.

Mirabai Knight said...

Awesome post. Just wanted to chime in on a subject I brought up a while back in a comment on your blog: While AAC devices are invaluable for people with fine motor control issues who prefer pictographs to words, it's also worth considering people (mostly older kids and adults) who don't use their voices to communicate but who can type in English without difficulty. I've been working on a free, open source program called Plover, which, when combined with a laptop, a $60 keyboard, and free text-to-speech software like espeak, will allow those people to type (and produce synthesized speech) as fast as people can speak -- up to 240 words per minute. It's not much more than a demo yet, but it's coming along surprisingly quickly; I'm hoping to have it more or less fully functional around this time next year. I wish I could write a version for the iPad, but it looks like it doesn't have true multitouch that can accommodate all ten fingers at a time, which is too bad. Maybe the next one that comes out, though! Being able to ditch the external keyboard entirely would be great. Anyway, I thought I should mention it here because in my post about it I cited kids like Schuyler as possible future users, depending on their communication preferences when they get into their teens and 20s.

http://plover.stenoknight.com/2010/03/how-to-speak-with-your-fingers.html

Anonymous said...

I am a teacher in uk who has been trialing proloquo2go with some kids with asd on i touch. Yes, the i touch is WAY cooler than a plastic PECs book, but it is also desirable. The multi functionality, mainly being able to watch thomas on you tube means my kids want to have the device with them. They will seek it out and remind adults to take it with them. I was worried about keeping them charged, however this problem has solved itself - they know how to connect them to a PC, and that this can get additional content, and so have taken responsibility for this. Just need a uk version of proloquo2go. Had so much fun trying to customise the symbol vocab - what do Americans call crisps? etc - trying to find correct symbol. All in all such a powerful tool, just need to drag some other teachers out of the dark ages...

Ashleas said...

Wow, I hadn't even thought about the iPad and other devices like it becoming voices and tools for those like Schuyler.
It makes perfect sense. It could combine what is essentially a laptop with her AAC device, limiting what she might carry some day. And with it's App-like technology, how hard would it be, once it (or another device) are able to run multiple apps to switch back and forth?

It already sounds like it is, but that it needs expanded on to support more systems.

Wow. This is something that I hope developers are thinking about and if not, I hope that they hear you all soon.

Samuel Sennott said...

Hi, Please not that the UK high quality voices are available as a free download to Proloquo2Go users.

Regards, Sam

Jodi said...

Just finished your book and I laughed cried and sometimes felt I was the one who wrote it! My daughter is only 11 months old and we just received her diagnosis. I can only hope she is as spunky as Schuyler! A true mentor and Superhero in my eyes! I'm also a pain in the ass parent and never plan to be anything else! Thank you for the insight!

Flygirl1 said...

My hope is that as the technology expands we will see more of a fusion between AAC concepts and other applications...I mean, how cool would it be to take some of the lessons learned in AAC and create devices for simple language translation for travellers? How cool would it be to see some of the ideas from AAC applied to smart phones/computers in general (auditory scanning, better word prediction)? How cool would it be when people who are temporarily non-verbal (intubated folks) can access a way to communicate easily because it's a readily available technology. I'm with you, weird can be very cool!

Anonymous said...

to samuel sennott
have the uk voices - its more the vocab that is an issue. also widgit have a set of symbols that are fairly standard here in uk, and these differ fairly significantly - but such a great start. am very excited about possibilities. just need to be able to work with symbol vocab that has already been learned by the kids i work with.

JTMom said...

Great post, Rob; we recently had a "cool" moment with our Dynavox. Some fellow spectators at the Sesame Street Live show thought T was controlling the lights/effects with his device.
Mr. Sennott, we all owe you a debt of gratitude; thank you, thank you! We are using your product in conjunction with other things/methods. Whatever works!

burgiboogie said...

Oh, I hope the PRC people get your message, although I am sure they are working on something. My son loves his vantage lite. So we thought the proloq2go, would be a nice alternative, when we were out an about. However, my son was not sold, it was too "touchy" for him. Given his less than willing desire to change, I am hoping PRC jumps on the band wagon soon.

Leigh said...

I am a teacher of children with Autism in NYC, and our school is doing a 2 class pilot program using iPod touches and Proloquo2go. It just started this week, and I have directed the technology coordinator to this post to include in the post-pilot reporting. For anyone leery of certain children being able to carry one of these devices without breaking (during tantruming, etc.) they have purchased AMAZING covers with lots of foam and built in speakers. We are SO excited for the future!!

Thanks for writing this post, Rob!

read2781 said...

This is such a great post! I am visually impaired and felt as a teenager that assistive technology wasn't cool. If I was a teenager, I would jump at the chance for cool assistive tech, such as the new generation Perkins Brailler that the American Printing House for the Blind (APH) released late last year. Now, though, I have a cool piece of assistive technology with 4 legs, fur, and wet kisses. Someone last week described my dog guide as assistive tech, which is an interesting way to look at her. She's a great dog, well most of the time. If every piece of AT was as cool as Julia the goldador, teenagers would be flocking to the teen with a disability. LOL People flock to me with the dog, which was not the case when I used a boring white cane.

bab006 said...

I started a blog http://babieswithipads.blogspot.com/ and a facebook page about using iPads with children with disabilities. I have been so pleased and exited at the opportunties that we have seen using it.

Leslie said...

We have a kind of unique situation with out 15 year old who has CP. She has the PRC eco and we also introduced her to Proloque 2 with her ipad but her first choice is to speak but in new situations it is difficult to understand her. So she can program both devices but isn't 'fluent" with either. I had actually thought about trying to get PASS onto the ipad because I love the idea of having Unity on the ipad/iphone. Glad someone else was thinking in those terms as well. Hard to figure out just the right combo for her.