Month: March 2019

Graciela’s reflections on the second chapter of Life in Letters.

The thing that I think is my most interesting thing to make the people that engage with me really work to understand is the trapped mind that is in my totally out-to-take-control body.

The thing that works against me the most is my speech. What is making the many wrong words tumble out of my mouth is what is often referred to as apraxia but it is easily mistaken for what most would refer to as speech. This means that words that I did not intend to say are often thought to be intentional. This is usually the toughest thing to have to explain to people about me. When the words I say are interpreted wrongly there are so many words I think to say but I have such a hard time getting them out.

It is helpful when people ignore my nonsense words and try to listen to my communicative intent. I want to talk to you and am trying to say this! Learning to see past the surface that is often saying the words that make no sense takes interest and patience. It is worth it though. Try not to overthink it and try to look past the surface.

Graciela and I just started reading Life in Letters by Lia Asssimakopoulos. Graciela was interviewed for the chapter on sibling relationships and she knows many of the other self advocates who participated in this project. Contributions made to the first chapter titled “Don’t Judge A Book By Its Cover” were made by a young boy named Calvin. Here are Graciela’s reflections….

The things that I experience without the really magnificent understanding that I need from others have had the most devastating impact on me. It is hard to make the world think differently about having the awesome mind that I have with a hard to handle body in control. I think that many people should see through the facade of the crazy body to the thinking, intelligent, interesting to know girl that lies inside. I need to see that we think of the really important need that each one of us has which is the need for human connection.

Hopefully she will choose to share more of her reflections as we continue to make our way through the book!