Ceebee
Hi! I'm Ceebee, an activist for Tourette Syndrome and disability rights.
January 9, 2022
About me
Ceebee (or CB)
He/Him or She/Her
Proud to be a butch lesbian
Tourette Syndrome Activist
Blind-friendly blog, images tagged with #described or #undescribed
Epilepsy safe, photosensitive posts all tagged with #seizure warning
My Disabilities
I was diagnosed with Tourette Syndrome in 2018 and developed coprolalia shortly after. Tourette Syndrome is something that I am forced to think about every day, because it impacts every area of my life. I started my blog originally to bring awareness and understanding to people not affected by Tourette Syndrome, and later to share experiences and build community with fellow Tourettics.In 2015 I was diagnosed with Facioscapulohumeral muscular dystrophy, a neuromuscular disorder that causes chronic pain and progressive muscle weakness. I am much less comfortable discussing my experience with FSHMD because of both the physical and emotional pain it causes me daily. It has taken away countless opportunities and made it physically impossible for me to do things I once enjoyed. My blog is dedicated above all to positivity while living life with a disability. But I admit that FSHMD has caused me nothing but pain.
My Activism
Online ActivismCoined term TicPunk in 2020
Featured on Instagram account @FacesofFSHD for muscular dystrophyReal Life ActivismMultiple speeches given to state and local government about the importance of accessibility and inclusivity
Multiple speeches given to local schools, educating staff and students on Tourette Syndrome
Volunteer at local support group for TS
Ambassador for Tourette Association of America
Fundraised over $2,000 for Muscular Dystrophy research
Why do I do image descriptions?
I decided to start describing (almost) all images on my blog in October 2022. Simply put, image descriptions make the internet more accessible to everyone.I have a close relative who also has Tourette Syndrome. Due to severe dyslexia (a comorbidity with TS), she cannot read and uses text-to-speech services. As well as this, I have many friends who are blind or visually impaired and rely completely on text-to-speech services. Image descriptions are an important part of allowing these people to experience my blog in the best possible way.