Speaking Up When You Cannot Speak

I get it. I really do. I am an anomaly. When I enter a room or go anywhere in public, people are fascinated and curious, so they openly stare. Some smile, and some tell me hello. However, most just stare, or they try to look without being obvious. Normally, I am good with these interactions because I know that I am quite different.

One thing that drives me bonkers though is when people talk about me like I am not able to answer or hear them because I am paralyzed and have a trach. My body doesn’t work, but my mind is sharper than ever, so having people dismiss me this way is disrespectful and aggravating.

My friends and family are wonderful about including me in conversations and talking directly to me. Even some random strangers will say things directly to me. The place where my voice is ignored mostly is in hospitals and doctor offices. They are all well-meaning, but almost always, the people talk directly to my husband and not me. That is until they realize I can speak up for myself even though I cannot speak.

Sometimes, when they ask Daryl a question, he answers, and I answer right after. Before long they get the hint. Other times, Daryl tells them I can answer for myself. He knows how annoyed I get when people ignore me, so he makes a conscious effort to defer to me when this happens.

My favorite healthcare professionals are the ones who recognize me as their primary source of information, wait patiently while I type, and actually listen to what I say. The best ones get my sense of humor and engage in my banter. They get it. They see beyond the wheelchair, computer, and ventilator. They see and treat me like a normal person.

I have not been able to speak for 3.5 years, but by golly, I will continue to speak up for myself. If you see me (or someone else in a similar position), it is okay to stare and be curious, but if you want to speak about me, then speak to me.