My Letter

I just learned that Secretary Kennedy actually read my letter to him. That has me reflecting on just how far I have come in the past three and a half years. When I first met Judy I was in the clouds, paying attention to nothing. I barely remember the first 25 years of my life. Now here I am, having my words read by a member of the cabinet. The changes in me, and my life, cannot be overstated. [letter below]

Not only do I now have a voice: I have friends and am getting an education. The old me was like the living dead; I am now one of the happiest people on earth. I now look forward to my days instead of sleepwalking through them. 

I feel like things are changing for the better for we nonspeakers. I am not sure why I feel that way. Maybe it’s that more and more people are hearing about spelling for communication. Maybe it’s that every day, someone new starts to talk now. Maybe it’s the promise of new research. But whatever it is, it has me feeling really upbeat. 


__________________________
Open Letter to Secretary Kennedy:

Dear Mr. Secretary:

I feel compelled to write, to speak for those who cannot. To have nonspeaking autism is to suffer each and every day of your life. To not be able to talk is a kind of hell on earth. I am incredibly lucky to have learned to spell for communication. 


Almost all my life I was trapped inside this body. It was unutterably lonely, to exist but to be known by no one. And most nonspeakers live in that unbearable loneliness their entire lives. On top of that, we all have OCD and anxiety, which is its own kind of hell. 

There are two battles that we in the nonspeaking community must fight. You covered the first in your speech last week. I am nearing my thirtieth birthday, and we still have nothing to help me. The other battle involves the argument over the use of letter boards to allow us to communicate.  Our poor parents spend their entire lives caring and fighting for us. 

We are highly intelligent and understand only too well how the world sees (or more accurately, doesn’t see) us. But those loud voices you hear from the speaking autism community are not our voices. Ours are silent, spelled out one letter at a time. And those of us who can spell to communicate are only a tiny minority of the nonspeaking world. But we are spelling loudly now.

We want to know what happened to us and we want to be cured. 

Thank you for being our champion. 

Sincerely,
Rocco Cambareri