Despite Everything, I Still Want to Speak

As many of you know, my DynaVox has been on its last leg for over a decade. I've revitalized the thing about four or five times now. I'm embarrassed that I still choose to use it. In anticipation of wanting to keep it alive, I found a guy who works on electric scooters, and he put Tesla batteries in the DynaVox. Pretty sweet, right? Not soon after, the charging port died. I was not surprised. My beloved DynaVox is with a technician who is replacing the motherboard. Yeah, I am stubborn as heck and want to revive the DynaVox yet again. I am doing this for one reason only: comfort. I love my DynaVox. It makes sense to me. Granted, this is after 16 years of it being my voice. All the speeches, readings at weddings, toasts, and countless conversations, it’s been an extension of who I am. While this may seem like a dramatic approach to take, you have to understand that this is truly the tool I use to communicate to the world that I am intelligent. Take that away and what do I have? I have you all who understand me, but I am nothing if I cannot quickly communicate my intelligence level. I am trapped inside my body without my DynaVox.

Currently, I am using the Accent 1400. I’ve had the device for eight years. I’ve gotten a new wheelchair, four new phones, but switching out communication devices has been exhausting. I’ve had to have the Accent on my wheelchair for a week and it has frozen twice, I accidentally pushed shutdown in the middle of a Starbucks order, and it stopped speaking mid-sentence today for no reason. I was utterly infuriated. I’m exhausted and frustrated. There are no words to express my frustration.

The good news is that my speech therapist is extremely devoted to making it work. I’ve stopped counting the number of e-mails I’ve sent to this woman. It’s been figuring out how I make it work for me which is excruciatingly difficult. Yes, I remain positive even though throwing it out the window seems like a better option. I have to highlight the fact that at least fifty people told me this day would come. My therapists, my friends, and even people who also have Cerebral Palsy and dystonia and have moved on from the DynaVox have looked at me like I am crazy. Yep, even people who have the same diagnosis as myself have warned me about this. I wanted life to be easy; I wanted to communicate without being physically drained. To all the young readers who use a device to communicate: DO NOT use my story as an excuse not to change. In fact, please appreciate the fact that you have a support system at school that can work with you as needed. This whole being an adult who has a disability is amazing but at times, truly a hardship.

All I ask of everyone reading this is to understand that if I have the DynaVox on, it simply means I chose comfort over challenge for that day. If I have the Accent 1400, I’m choosing to challenge myself. With that being said, if you have a DynaVox sitting around your house or office not serving any purpose, I will take it!

I’m grateful for everyone in my life. After all, you are the reason I want to talk so much. Bring on the speaking engagements too! Despite everything, I still want to speak.

Keep Speaking,

Hannah!