Today I want to talk about how people talk to me like I’m an idiot. They want to acknowledge me, but they don’t know how. Obviously, they think I’m like a child, not sure if I understand or, at the very least, they are observably uncomfortable. I don’t even think they like me sometimes, but it must be they are just afraid or they don’t think I can hear them, or they need to talk louder, or in simple sentences.
It isn’t their fault, they just don’t know how to act. I just want to tell them I’d love to talk with them sometime with the letter board. I guess I should find a way to engage them. I’m hoping that the people in my life, or at parties, will just relax and not be afraid. I wish they would come and ask my mom or dad to facilitate conversations.
I’m reminded about the story of my mom. After doing keynote speeches at a disability conference in Massachusetts, my mom and dad were leaving there to come home, and going downstairs with suitcases when my mom missed a step and fell, breaking her ankle. By the time the taxi pulled up to the airport, her ankle was so swollen she couldn’t walk. They brought her a wheelchair and my mom said, "I wonder how long it will take for people to devalue me in a chair like this."
It wasn’t even five minutes before that devaluation occurred. When they went through the gate the guard asked my dad if my mom had any keys or metal on her, as if my mom suddenly couldn’t think or talk or answer for herself because she was in a wheelchair. My dad snarked back, "She just broke her ankle. It doesn’t mean she can’t talk or answer for herself!" My mom saw that one coming after her years as a relative to a mother and big sis with M.S. She had been answering questions like that for a long time.
I’m not mad at all these people who don’t know how to approach me. I love most of them anyway. It’s not their fault. It’s a natural reaction. Even animals approach each differently-abled animal in annoying ways. I’m lucky not to be shunned or destroyed as a breach of nature or something.
I think my parents are more likely now to move forward and train other people. For the first thirty years, they were just happy if I could be allowed to attend events. Now they are upping the requirements of others we know to include me more. It has to be helped by the facilitator. It’s uncomfortable, but we need to break through these barriers. My dad calls this problem a spectrum of devaluation. We’re going to change this and you could do the same, everyone. Please, can’t we just be friends with one another? I love my distant friends and family. I want to converse with all of you.
illustration by Carolyn Reed and Photofunia