Advocacy Tips from Two Superstars

Graciela was invited by her friend, Mark Utter, to co-present with him at the AutCom conference in November. This is the transcript of their presentation.

The story of our lives before we had access to communication.

Graciela: It is a hard thing to learn to be your own advocate without having the ability to speak loudly. Advocacy can be so many different things to different people. A lot of my advocacy is related to my needs because many years went by without a way for me to advocate for myself because all of my words were getting too stuck in my mind. 

My need to be in more control of my life went unmet for a long time. Many lives are still stuck in this horrible abyss of silence. Life is a struggle when it is covered in a blanket of loneliness and lost words that have no way out. I was living in this abyss of silence for ten years. 

During this time many of the lovely people in my life were trying to have the great feeling in their hearts that I was not as bad off as the doctors said I was, but it is hard to listen to the experts while believing in the potential of your child who cannot speak much and is having a lot of other struggles. 

Many parents get so starstruck by all of the experts and their assertions of incompetence and lifetime illness. A life cannot ever be what it is meant to be when it is seen through this lens of ignorance. Letting go of these ludicrous assumptions can be so hard for many parents. 

Luckily my parents never stopped being open to my potential. Getting my freedom back from the hard ideas that I was not competent was the most amazing thing that has ever happened to me. 

Mark: I have a body and mind connection disorder.

Before I had access to facilitated communication my living felt like I was on my own. Yet much attention was given to my body. If you can imagine being a glorified pet, that is what it was like.

I was in the world but experiencing it in my own way. People didn’t know I knew everything that was going on around me. I found it frustrating that people found me stupid, and I was not.

I am wondering if any one has questions for Graciela and me before we move on to talking about developing our communication skills.

The Joy of Accessing Communication

Graciela: My first lesson in learning how to work with a letter board went so well and almost had me in tears because I knew that it would make my life better. The hardest part was being great at it. I had many moments of despair when I was learning the ways of the letterboard. However, I was determined to persevere in order to be able to show my intelligence to everyone. It is what I had been wishing for and hoping for for so many years.

It is because of the time and intense practice that I have committed to my way of communicating that I am now able to be here doing this presentation. The many hours of hard work have been worth it. 

Sometimes communication can still be a challenge. My body often acts one way while my mind has a totally different thought. Can you imagine this being your reality? It can be really difficult to get out my thoughts with my uncooperative body.

I need to get the people in my life to understand the difference between my loops that are just impulsive responses to stimuli in my environment versus the things I want to do or say. It is so hard for the people in my life to really easily learn the difference. Therefore, it is my responsibility to educate them and encourage them to think before they react or respond. 

It is important for me to make my situation better if I can. It is not always easy to advocate for myself, but it is often necessary and makes me so much happier with my life.  

Mark: Finding a form of communication has been a life saver.

It was, and still is, hard to work with new people.

It has happened that I have created a film about the importance of Facilitated Communication in my life that you can see at Vermont PBS’ ‘Made Here’ web site or get one of my copies from my laptop bag.

I am wondering if you all have questions for Graciela and me about learning how to use our forms of  communication.

How Our Lives Have Changed Now That We Have Access to Communication

Graciela: It is awesome to do the things that I really want to do in my life now that I can communicate about these things. Many things in my life have changed for the better. The things that I have access to now have changed the trajectory of my life and have the potential to do the same for so many others. 

Now that I am free from the steel bars of the prison of silence my days are full of education and social interaction that was not happening much before I had access to communication. 

Mark: My work now is focused on young people who type to communicate and other people with disabilities.

Before I made the movie I thought it would liberate me. Oh I didn’t want to be someone with a disability but I am.

We have so much work to get done together to keep shifting the tides of society so we can be seen as important members.

Advocacy Tips and Reflections from the Superstars

Graciela: Because I am in the know about hard times that many like me have without access to communication, I make it one of my life’s goals to do whatever I can to help more people get access to great communication. 

I think that without this lives will never be changed to help other prisoners inside their walls of silence have an opportunity to make their real selves shine.  

Being in the limelight while advocating can be difficult because people like to criticize the many individuals who have it in them to do things that give the gift of life and freedom. Life is too short to listen to these naysayers. Instead it is necessary to listen to your heart. What is it telling you? What are you going to do with this information? Will you heed the call or ignore it?  

My advocacy is just getting started but it is going to be much more than I can handle by myself. This is why it is important to have friends and a lot of really amazing allies on your side who are making a commitment to working together with you. It is also important to educate as many as you can when you can along the way. 

Mark: It is essential for people to know how to say what they need and also to make changes that are hard but will make them stronger.

Let’s hear from you! What advocacy experiences and tips would you like to share?