What’s [In]Visibly Disabled About?

...and who the f*ck is Stephanie Deleon?

Created by a disabled woman for disabled peoples, [In]Visibly Disabled was established in 2020 as a safe space for people as well as caregivers of our chronically ill and disabled community. [In]Visibly Disabled works together in efforts of uplifting each other and learning how to advocate for ourselves and our community.

Who are you, Steph?

My name is Stephanie, I'm 26 and proudly disabled. I began my journey with disability at 15 years old after having Atypical Mycobacterium Abcessus in my jaw, which later led to Osteomyelitis, Complex Regional Pain Syndrome, Trigeminal Neuralgia, and Hypertrophic Masseter Muscle. I eventually received my diagnoses of Pseudo Tumor Cerebri, P.O.T.S, Mitral Valve Prolapse and Endometriosis, amongst other disabilities. Since beginning my journey, I've become passionate towards our disability civil rights and learning more about how I can better advocate for my community.

I've been managing multiple disabilities since surviving Atypical Mycobacterium, yet I was no stranger to medical trauma or medical negligence, and I learned much more about the complexities of what it means to be disabled in today's society.

Dealing with such complex health complications at a young age, I began facing disparities that I would never imagine prior to becoming disabled. Medical Gaslighting, Medical Trauma, and being ignored by Doctors due to appearing "able-bodied". The healthcare system should be centered towards providing care towards all without prejudice.

Unfortunately, prejudice is a common theme in today's healthcare system.

How did you find your path towards disability activism?

In 2020, I took part in a global campaign "Ableism & Me" where we raise awareness of different areas of medical ableism, and how to best tackle it. I began my journey of educating myself on the variety of disabilities and how ableism affects us on many levels. It's been an honor to have a group of steadfast people who are ready to make a difference.

Since opening my view on different forms of ableism, I learned that trauma for disabled people can come in many different forms. I began educating myself on how to show up, advocate and learn more about disability rights.

What are your goals within [In]Visibly Disabled?

Since dealing with these experiences and now managing chronic pain & chronic illnesses, I've been working relentlessly to prove that pain does not define anyone and neither does any diagnosis. It is how we persevere to live our best lives despite how society views disabled people.

After dealing with medical trauma and neglect, I've formed the mentality of fighting to get rid of the stigmas that surround disabled people, with both visible and invisible disabilities. To de-stigmatize the belief that disabled or chronically-ill people are limited to those with visible disabilities, while also learning how to best support more people with chronic illnesses in new ways.

My ultimate goal is to work with fellow disabled people to create a community where we communicate our experiences, share our joyous moments, and learn how to advocate for each other and ourselves.

I'm excited to begin this new journey with you, thank you for joining.