September is Dystonia Awareness Month. As a person living with Dystonia I find it difficult to exist in many of my advocacy circles on the state level in Ohio.

It seems as though my National Advocacy groups accept me as I am but in Ohio it is lot different.

I thought a blog might help raise awareness and shine light on the fact that there are people use (AAC) Augmentative Alternative Communication to communicate intermittently and how we should be more inclusive as a community.

When someone uses a communication device it takes time to communicate and people should be given time to be heard thru their communication device.

When someone speaks but also uses AAC people should just respect them regardless of if they speak or use an assisted technology to communicate.

Ohio advocacy spaces aren’t truly inclusive. I find myself in a daily struggle whether to log on an advocacy group or to just skip a group because of lack of understanding. It is a privilege to speak. Often there are things people take for granted. We often don’t wait and give people time to speak. There is a lot ableism and lack of understanding about disability challenges that people face and especially for those who have speech or language based disabilities. It is difficult to be heard when someone’s speech might be great one day and the next it isn’t great.

This past week I found that some people don’t even know what AAC is. If you don’t use your voice in normal way people just don’t hear you. It is a struggle to be included.

I believe when people have the right tools and supports they can communicate and be active in their communities. That participation sometimes is affected by the communities that exist understanding and making way for a different way to communicate.

We advocate for technology and Ohio is a technology first state in promoting independence. At the same time, how many people do you meet in your advocacy groups who are actively using technology to help them speak or be heard in an advocacy space?

In my situation, people are also used to my strong advocacy voice that they don’t even recognize my computer generated voice even though I am the same person with same message. On days where my disability affects me more I am excluded.

My disabilities aren’t obvious. I have Autism I also have Dystonia a very complicated disability and the symptoms when I am In a full blown attack look like I am having a stroke. People have actually mistaken me in those moments. I have used AAC to advocate for my needs. I have had to fight to also keep my day going. Things people don’t realize. This being my day is not cancelled when I use my AAC to communicate.

Dystonia is a neurological condition that causes involuntary, uncontrolled muscle contractions/ movements.

This can result in repetitive twisting motions, tremors, and unusual, often painful, body postures. It affects speech and sometimes choking and vision issues. These symptoms happen because of bad signals from the brain, which affects how muscles are supposed to move.

These symptoms can happen at any time and I use AAC as my back up default way to communicate.

I have been patient but often my silence is just this mindset if you don’t speak up then you must not have anything to say.

I have a lot to say. Often it gets missed. My AAC device can help me send texts or copy text and paste to a chats on zoom or teams. I sometimes type in the chat to participate when I can type. My active voice in communities is often not there unless I raise my hand and try push my self to speak. The pause sometimes makes people uncomfortable or they think I am not there or they think the connection is bad. I want to be heard when I use my AAC too. I need time to push a button takes literally seconds. I don’t raise my hand until I can generate my communication to help people. Still then that 3 seconds of silence usually makes people move on.

It would be helpful if people recognize that there are AAC users among them that the 3 second pause is necessary for communication.

Not everyday is the same. My AAC device is my voice it is way of communicating when I don’t have physical words.

September is Dystonia Awareness Month. I chose to raise awareness to change outcomes in hopes my advocacy spaces will be more inclusive and accessible to me.

If you want to read more about Dystonia check out these resources

Cleveland Clinic

Dystonia Medical Research Foundation

National Organization on Rare Diseases

This is the only plain language resource I could locate from Care Pathways on Dystonia so much information out there but not very much in plain language.

All around Dystonia is treatable and for me 40 years of symptoms and I am finally on right pathway for treatment. Finding spaces that are going to be accessible for me to be included when my symptoms are intense is problem.

We should want to be a community welcomes anyone with any disability and in anyway that anyone communicates.

Being able to speak is a privilege that many people take for granted. Losing my ability to speak with my own voice has been a lot of struggle and the need to be included is important to me.

As someone who is a national advocate, I want to be included in state wide advocacy too. #EveryoneCommunicates and as a disability community we should be willing to learn about other disabilities and ways people communicate to make space for more people to be at the table.

To the person reading this who uses AAC all the time your voice is valuable at the tables of advocacy . Just as I don’t plan to stop communicating please don’t stop. Everyone has a seat in advocacy just Ohio must be more open to being a space that makes room for anyone to communicate and speak up!