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X-PLAIN THIS!

BY MARC MUHLMEISTER

My name is Marc Muhlmeister, and I have fragile X which means, by definition, I am cognitively impaired. That just goes to show how meaningless definitions are because I am most certainly not cognitively disabled. And now that I can talk by spelling, I believe that I can be a spokesman for others like me. All people who are nonspeaking are defined by that inability. It’s a wrong that must be righted. I am to be a voice for change. 


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8/26/2024 5 Comments

I Am Who I Am

We are at an interesting time in history when human rights are a major topic across the country. I feel that with the growing acceptance of people’s differences there will soon be acceptance of spelling for communication. I am labeled with a genetic disorder because I am missing a part of a chromosome. That led to a formal diagnosis of cognitive disability. And I had no real way of letting people know that wasn’t the case. 


After I could talk, there were still people who doubted. After all, someone with Fragile X must absolutely be cognitively deficient. Hard to have an open mind when everything you’ve learned tells you that. Seeing familiar people disbelieve my true abilities hurts. Can I teach them to see me as I truly am? I have decided to try, using this blog as a platform. 

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5 Comments
Annika Cioffi
8/26/2024 11:18:25 am

Incredible words in your post, Marc. You are proving beyond a shadow of a doubt that the “experts” are the people who live with the issue, that first person narrative is imperative. I am honored to read your words, to share your words and I know your words absolutely have the power to make change in how people with this Fragile X label will be seen, treated and spoken to, in the future. Job very well done…

Reply
Helena Nejman (bubby) to Marc
8/26/2024 12:10:47 pm

There are no words adequate enough to tell you how much much love and pride Saba and me feel for you &your incredible accomplishments through mouth to hand

Reply
Joanne
8/26/2024 05:39:19 pm

You are amazing Marc!! I am so proud of you! You have a lot of powerful words to say and we are all looking forward to hearing your thoughts!

Reply
Jim Cutie
8/26/2024 06:24:02 pm

Marc,

Such powerful words. Labels are meaningless, believing is everything.

Jim Cutie

Reply
Alex Gorman
9/10/2024 09:15:01 am

I am bitterly upset by these wrong thoughts and beliefs about our diagnoses. We will prevail though.

Reply



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