Who Owns Hailey's Voice?
"... advancing technology is both our savior and our doom" - Olaf the snowman
My daughter Hailey1 is minimally verbal. She has had an AAC device (Augmented and Alternative Communication) since Early Intervention (birth-3 years) times. She was about as young as any child I know of to be eligible to receive one through insurance. It was obvious from an early age that verbal communication was going to be a struggle. As such, we started the process of getting a device quickly. If you’re not familiar with an AAC device, it’s an iPad with a particular language generating app (there are many different apps) that non verbal people can use to “verbally” communicate. It’s meant to be Hailey’s voice.
Although I’m a semi educated parent, I am clueless of the in’s and out’s of special education. Little did I know that obtaining an AAC device through insurance might pose a problem for its use in school. To save you from total boredom I'll forego the details but it recently came to my attention that school staff “can’t” edit the layout or pages of Hailey’s AAC device. When I say “can’t” I don’t mean the school based Speech Therapist doesn't have the knowledge or know how to do so, but rather there are rules against their editing the buttons or pages to better fit the school setting.
Today we had a meeting to discuss using a different system provided through the school that staff are more familiar with. After talking through the differences of programs and asking some questions, it dawned on me that the problem was who is and who is not allowed to edit the device based on who bought it.
If I bought it through insurance, only I can edit it and the school “can’t”.
If the school buys a device, we are “allowed” to “borrow” the device and edit it to fit home routines. That device will need to go through some kind of transition process when Hailey goes to middle school and again for high school. Upon graduation there will be another process by which to allow the device to remain in Hailey’s possession. The school district sometimes does, and sometimes does not have a staffer to assist in these transitions. Perhaps we will be able to purchase the device upon graduation. Perhaps not.
Apologies for this technical and pedestrian story. This is all to give context to the feeling I had when I left the meeting today. That feeling is paradoxically a helpless resignation to the hope of a tech enabled voice for my daughter. It felt like a microcosm for a larger sense of disillusionment in the presence of material riches.
On the one hand, my daughter is incredibly lucky. She’s living in a time when developing a tech based voice is possible. On the other hand, seemingly pointless bureaucracy about who bought a particular iPad, defines ownership of Hailey’s voice and whether or not she will be able to keep it through life transition points.
Capitalism has powered technological advancement. Technological advancement has made life better in incalculable ways. That same advancement has made it as easy as a finger swipe to buy material goods made oceans away. It has abolished boredom and enabled constant distraction so as to not be left with one's own thoughts for longer than a few seconds. It's made life safer for humans in that they are securely holed up in their place of living staring at various screens instead of being out in the world where danger lurks.
The social architecture that made Hailey’s voice possible is the same one withholding access to that voice in a recognizably human way.
Where enabling human flourishing is possible (giving a voice to the voiceless), it's constrained by brain draining bureaucracy and financial incentives. Where decreasing human flourishing2 is possible (capturing attention forever) freedom and access abound.
Our situation is not catastrophic and we will find ways around these roadblocks. Maybe the whole thing is a simple misunderstanding. Maybe I'm likening a small experience into something larger than it is. Maybe I'm making a mountain of a molehill. Or maybe I’m at least a little bit right.
Better yet, I’m making a mountain of a molehill and I'm a little bit right.
Pseudonym
I’m sorry about your situation. You are not making a mountain out of a molehill. You are definitely right about the roadblocks to access of communication methods caused by pointless bureaucracy. And I’m someone who think bureaucracy is necessary in most cases! I have indirectly witnessed similar unfairness with the autistic families around me, even though their children are young adults.