For about five years now, I have been using a speech assistance device to help me communicate with my disabilities on and off. It has been a battle to find words and speak up for what I need and for people to listen to me when I use an alternative communication method.

A lot of people know me for my use of art to communicate and advocate. When it comes to using assistive technology or picture exchange communication cards people look at me and don’t even realize I am the same person.

I experienced some grief and heartache last year while trying to figure out how to communicate with my peers. I was in a leadership role and my disabilities were greatly impacting my speech. It made it difficult to advocate in some spaces. I fought thru a lot of ableism and almost gave up on advocacy all together.

The more I tried to force words just to be included the most my brain hurt and the most dis regulated I became .

My world was crashing and my peers other disabled advocates did not understand. The more I tried to use technology the more I found that the spaces of advocacy just did not support my use of technology to be at the table.

I went thru a very dark period of time last year , where I didn’t feel like i was welcome in the advocacy world not in Ohio at least. People did not understand what I was going thru all they saw was my slurred speech and cognitive challenges even though they themselves have disabilities. It made me feel so alone and eventually I just walked away from many of the groups I was involved in.

A friend and fellow Advocate Rosie encouraged me to go Project Stir where people accepted me as I was and I learned some advocacy skills and also my supported decision making team helped me to learn a lot as well.

My SDM team, friends and medical team supported me in pursuing alternative forms of communication to communicate. I advocated to get my alternative forms of communication in my care plan and for my staff to honor and respect the ways I communicate.

The more I have used AAC, Art and other visual tools to help me I have been able to improve my situation,

AAC has helped me to change outcomes in my emergency medical needs and also in communicating what I need, my likes, dislikes, and to advocate for my care needs.

I still have moments where people will see me speaking then they don’t think I need to use AAC. Every day my needs are different . I have days where I can speak great then I have days where I have no audible or intelligent communication. Sometimes I don’t even know my speech isn’t there or people can’t understand me.

When I become aware I switch to my AAC to help myself and also times I switch to help myself not burn out.

This week I wrestled with that idea of “I am still here even though my verbal words might not be.”

I found that my current staff were treating me differently when I went thru a verbal shutdown. Then I thought to myself my AAC is my voice. My Augmentative Alternative Communication is my voice. My words and thoughts still remain even though a computer generated device speaks them.

Think that people are teachable and we just need more awareness about how AAC helps people communicate with disabilities that affect their speech.

I face stereotypes because of my advocacy involvement as well. People see me speaking up so strongly that when I need to use my AAC, those same spaces are not available to me. The reality is that people are so use to me speaking up through my own voice they forget I am same person when I use AAC.

Sometimes people forget I am that same girl who advocates with art or who has been outspoken when my verbal communication isn’t up to my baseline.

I am still trying to be active in advocacy even as my spoken communication is struggling and inconsistent that people don’t even recognize this has caused me challenges as well.

There is grief in losing my ability to speak. People don’t see that invisible part of my life. Knowing that my disabilities impact my speech, having the struggle to speak at times has been very difficult on me. I have experienced communication struggles my whole life. Those that have read my book know the deeper story. For those who see me on surface will never understand how it is a privilege to have words to speak and to speak them with one’s own voice.

I think about how growing up if I had assisted technology my life would been different. I also appreciate my parents taught me of use art and writing to communicate too.

Being able to use AAC has been life changing. It has let me still have a voice at the table. It has let me have a voice in my care when I cannot verbally express something.

Assisted technology has helped me to overcome slurred speech and the struggles with word finding. It has given me a new voice and has empowered me to fight back for my needs and to help people understand me.

Assisted technology and AAC has helped me to take back my life and tell people what I want and don’t want and also to advocate for my needs and care.

In my health situation using AAC in the emergency room or in emergencies has allowed me to communicate my symptoms and what I need the most. It has helped me to communicate so doctors and nurses know how to help me. AAC has stopped me from going thru unnecessary medical procedures and helped me help myself .

AAC has helped me better communicate to my staff on what I need on a daily basis. It has helped me identify foods i want to eat and that I don’t to eat. My AAC helps me to communicate when I need emergency medication.

AAC has given the right to communicate and advocate for my needs . Assisted technology has opened many doors for me. I believe when people have the right tools and resources they can be part of changing outcomes and live their best lives .

I am an intermittent AAC user. I talk some and I also use AAC. My speech goes in and out because of my disabilities Dystonia and Autism. I am able to do great things because of assisted technology.

Using AAC has been life changing it’s also helped me to change perspectives to help people who support me to understand when I use my AAC device my day isn’t cancelled. We are still going out and engaging with the world. I still want to be included even when I have a difficult day to communicate with others.

My health challenges don’t stop me from being me and living my life. I believe using AAC is taking care of me it’s honoring my need to communicate and still be the table in my care needs, person centered planning and advocacy.

I want people to know AAC is my voice. I will continue to advocate for access to communication devices and the right to communicate through assisted technology because it’s changed my life and given me a voice in all facets of my care.

Every year billions of people make New Year’s resolutions. A couple years ago I decided to chose words instead of resolutions. The words I chose would be the words I wanted to see for my year. Last year I chose the word “balance” and among all odds was a balance of my year with some good and some bad.

For 2025 I chose the words Focused and Celebrate. It’s been a year of staying focused, finding the good in each day, letting go of things I cannot fix and celebrating milestones.

I believe that words can help us or they can radically change us. So much power in the words we speak and our thought processes.

For 2025 I will stay focused and I will celebrate the good things.