Readers, I have shared intricate stories to you about my life. I know for some of you the way I do things is still a little foggy. Frankly, if you feel that way, I don't blame you. I want to focus on how I communicate this month so you can understand my daily life better. Recently, I sat down with future speech therapists at Northwestern University and answered their questions about what using a DynaVox feels like. The students had some good questions.
The first question was how do you keep people engaged while you prepare your messages?
This is an interesting question only because I don’t really have to keep people engaged. In some circumstances, I do let people do other things while I type which makes it less formal and awkward. I find that this doesn’t take away from the conversation or make me feel bad. In general, my family and friends know if they are going to talk to me whether in the coffee line or a serious conversation, they’re going to have to wait and have patience. Needless to say, I need patient and understanding people in my life.
The second question from the students was what do you do if someone ignores you or acts like they don't think you understand what's going on?
If someone ignores me it’s usually not on purpose. My assistant gets their attention and we have that conversation I want to have. If someone were to ignore me on purpose, well, they are just not going to be in my life and I probably wouldn’t think of the person again. Now, if my friend is running late for class and doesn’t stop to talk, it’s different; a conversation takes a good five minutes with me, it is OK. Also, if someone treats me like I don’t understand what’s going on; that is probably one of the most infuriating things I endure due to my disability. If the person has to be in my life for example, a professor, I will have several conversations with that person to get my point across. I know people such as my caregivers will help me with that person. If it is not a person I absolutely need in my life, I get away from them as fast as I can without being rude. I am a lady but they really don’t belong in my life, I have so many people that love me unconditionally and they deserve my energy, not the other way around. Although I have many loving people in my world, I always have room for more.
The third question was do you have any tricks you learned to put new people at ease?
The one trick that came to mind first is that if they seem nervous, I let them look at my screen. It's very funny because I can totally predict reactions. I always get, "look at that", and "that is so cool", or "technology is amazing", and my personal favorite, "your screen is pink". Those reactions do help break the ice. Sometimes, with kids it’s helpful to let them type in their name and understand what I have to do to speak. I also encourage other users to have empathy for the other person. They probably have never seen a device before, give them time to adjust.
I ended the Q&A on this note:
Honestly, my advice to users starting out would be to be patient. It can be frustrating and time consuming. I love being witty and sometimes my witty comments won’t make sense two minutes later which is frustrating but I still am going to be witty because it shows who I am as a person. Even though my professors understand that my comments take a while, and I’ll end up saying something that is not relevant to the conversation anymore, that is not a feeling I like. On the flip side, people have embraced how I communicate. I meet with a chaplain every week and we have grown close. So, one day he pointed out that every time I say, "it sucks", I giggle before I press the message button. Now, it is a cute thing I do. So, you can see it either way but I find that my habits using the DynaVox show people my personality. Essentially, it gives you freedom and lets other human beings understand just how crucial communication is, that is really a treat at the end of the day.
I did have my DynaVox break yesterday and I was immensely frustrated. It felt like someone put duct tape over my mouth. It was only for about 18 hours. Thankfully, my therapy clinic has an assistive technology department and they were able to get my voice back.
I hope you had a wonderful Thanksgiving and are welcoming the holiday season with warm hearts.
Love,
Hannah!
P.S. I am relieved and joyous that my friend Julie is home. She is still very much on the mend. Unfortunately, she cannot come back to school until the fall of 2012 which saddens me but when she does come back; she will be ready to take over the school in her own way!
