I've been thinking a lot about gatekeepers lately. Maybe it's because my son is graduating in a few weeks and I'm looking at a future free of IEP meetings, those annual rituals of begging, hat in hand, for my kids to please have some of that free and appropriate public education they're entitled to. There's something kind of liberating about going to a community college and just registering him for classes, you know? The folks there may look at his placement test scores and have their doubts as to whether he can hack even a remedial course of study, but they'll happily take our money and give him a seat if he wants to try. Don't need to get ten people in a room to sign off.
Gatekeeping came to mind, too, when I read about the American Academy of Pediatrics harumphing about Sensory Processing Disorder, advising doctors not to diagnose it and parents not to worry their pretty heads about any newfangled therapies that haven't been doctor tested and approved. Now, I agree that parents pursue some whackadoodle remedies when left to their own devices. Science is good, and useful, and important. But when your child won't go to school or put on shoes or really stop screaming because his sock seams are driving him crazy, it doesn't do too much good to say, "Honey, there have been insufficient double-blind trials for me to believe that you have a legitimate complaint about your sock seam. Give me another ten years and two or three rounds of funding, and I'll get right back to you." You buy the pricey seamless socks and the surgical scrub brush and you grab the first OT you can find with a net swing and a ball pit and say, "Help me." And if it gets the shoes on and the kid to school and the screaming to stop, the American Academy of Pediatrics can kiss your behind.
Over the past couple of days, I've been reading about the latest twist in the case between Speak for Yourself, an AAC app, and Prentke Romich Company and Semantic Compaction Systems. Prentke Romich and Semantic claim that Speak for Yourself infringes on their patents, and have sued the speech therapists who created it. Dana Nieder, whose blog Uncommon Sense was a finalist for the 2012 Readers' Choice Awards here for Favorite Special-Needs Parenting Blog, spoke out when the lawsuit first arose about how Speak for Yourself has allowed her four-year-old daughter to communicate for the first time, and how it just clicked for this little girl in a way that other apps and devices like the ones Prentke Romich produces did not.
Companies have a right to protect their patents, of course, but given that Prentke Romich has no app of its own, it's hard to avoid the conclusion that they're protecting their gatekeeping privileges, too. It's not like you can just pop down to Best Buy and pick up one of the company's communication devices if you have the bucks for it. There are layers of consultation and bureaucracy, and whether that's a good thing because it makes sure experts devise a solution that is exactly right for each individual user, or a bad thing because it puts people who don't live with a child every day in charge of deciding what he or she can and cannot do, it's certainly a powerful position for a company to be in. It must be worrisome to see parents downloading things they used to have to apply for.
The court case over Speak for Yourself is still pending, but this week another gatekeeper stepped forward to keep kids away from an app that might let them speak: Apple. The company that has prided itself on the way the iPad has transformed the lives of kids with special needs, that just this week announced many accessibility improvements for users with disabilities, yanked Speak for Yourself from the iTunes store -- making it impossible for new users to find it and current users to receive updates, and raising the concern that future operating-system changes might render it unusable (or erase it altogether). According to an announcement on the Speak for Yourself website, "Apple removed our App from the App Store under pressure from Semantic and Prentke Romich. Now our sadness and disappointment have turned to indignation. Speak For Yourself will continue to fight this baseless lawsuit and the obvious, and blatant interference with your fundamental right to a VOICE which is motivated solely by their desire to drive SFY out of existence."
Now, Apple yanks apps from the iTunes store all the time for the possibility of infringement, and this may be a perfectly prudent move on the company's part, but as Dana Nieder wrote in a post entitled "The Silencing of Maya," "This app is not a game, it's a necessary, irreplaceable voice for people with disabilities. Why would Apple decide to pull it so arbitrarily?" She also wonders, as I do, whether Prentke Romich (whose response to the app-yanking you can read on its Facebook page) has really thought through all the PR ramifications of a company whose motto is "We Believe Everyone Deserves a Voice" doing everything possible to deny a voice to kids like Maya who depend on Speak for Yourself. All the measured tones and lawyer-approved language and calls for responsible and time-intensive development sound unbelievably cold when set against a little girl who will no longer be able to say "Daddy, I love you." There's got to be a way to settle this without making a company with a long tradition of helping kids with special needs look like heartless moneygrubbers. Find it, folks.
If you'd like to express your opinion on this issue and help move things along, Dana Nieder has links on her blog post to court papers and Facebook pages and other avenues of protest or support. (It will surprise me if there's not a Change.org petition up very soon as well ... and indeed, here it is.) Time and Huffington Post have picked up the story, and given the appeal of putting Maya's cute face on a boring post about patent law and technology, it's likely that other mainstream outlets will as well, as they did the first time through. Share any posts you've seen or written on the story in the comments.