How I Make Invisible Disabilities Visible in Conversation

I grew up diagnosed with Ehlers Danlos Syndrome. Doctors labeled me with this medical diagnosis after my fifth ambulance ride. My frequent patellar dislocations and chronic muscle pain resulted in a lot of lifestyle changes for my family and me. These adjustments forced me to grow up faster. And, while though it affected most of my childhood and adolescence negatively, it taught me about ability at an early age.

When we think of diversity, our minds often think of race, gender identity, sexual orientation, and religion. Those serve as essential pillars to diversity, but other branches fall underneath that umbrella as well. A person’s ability shapes their identity as much as those other factors previously mentioned. Throughout my childhood, I recognized all the limitations placed on me because of my health condition. I also saw a difference in how one treated me versus another person. Many adults fed me sympathy. Some kids, most of them being in my age group, were convinced I faked this condition. They looked at my knee braces, watched me walk, and decided that I did this for attention.

Quite honestly, I couldn’t blame them for their accusations.

What Does Normal Look Like?

Without my knee braces, keeping my patellas in place, I looked like another healthy girl. I knew at a young age that if I looked healthy, people were less likely to exclude me from activities. I often found myself risking joint dislocations just so I can hang out with peers outside. Unfortunately, I couldn’t keep up with this facade forever.

At a certain point, school peers knew of my many ambulance rides. I could not hide it, nor did I care to anymore once I entered high school. People continued to look at my knees, or stare at my cane that I occasionally walked with on the bad days. It served as a popular conversation starter for people who I just met. They ran through the same list of questions: “What happened to your knees?” “When did this first start?” and “Can you get surgery?”

These questions did not bother me as much as their verdict. In fact, their recycled responses forced me to relook my entire situation. What did they say? I don’t understand. You look normal.

I found it hard to give a response. I did not know what normal meant to them. Did it mean that only people in wheelchairs were considered disabled? Am I over-exaggerating my condition? Do I really have a disability?

My Invisible Disability Is A Part Of My Identity

Fast-forward to the summer before my junior year of college. I no longer wear my knee braces, and only a few know of my health condition. During my second Resident Assistant summer training, I took workshops that focused on diversity and inclusion on campus. At one of these sessions, the entire room participated in an activity. The objective: walk towards the category that you feel matches the statement. Words like race, ethnicity, religion, gender, and sexual orientation hung around different parts of the room. And, in one section of the room, ability was taped to the wall.

The activity began, and the speaker started with the low-risk statements. But as the activity progressed, the room started to respond to more reflective statements. Towards the end, the speaker said;

“The part of my identity that I believe is most misunderstood by others is…”

I found myself standing underneath the word ability.

When we debriefed with the rest of the students, people began to talk about how they felt during the activity. Many shared their own personal stories. Encouraged by others, I rose my hand to share my thoughts.

I gave the Sparknotes version of my health condition. I noted that it isn’t the type of disability that’s recognizable by looking at my body. I explained that because people don’t “see” my Ehlers Danlos Syndrome, it can be frustrating to hear them disregard my condition or claim that I use it as a convenience. My goal wasn’t to fish for sympathetic smiles. I wanted others to realize that just because you can’t see a disability, that doesn’t make it less of a disability.

How Do We Make Invisible Disabilities Visible?

One way you can bring awareness to invisible disabilities is by creating a conversation around them. Listen to people’s stories about the challenges they face with their invisible disabilities.

If you don’t have a proper understanding of a particular illness, educate yourself. Learn how a certain disorder affects the body or mind. When people confide to you about their medical situation, don’t undermine their illness. If people are talking to you about their condition, they’re most likely seeking support. The last thing they need to hear is: It’s okay. You seem normal enough.

Also, refrain from using “normal” as a compliment. A person with a disability, whether it’s visible or invisible, should be viewed in the same manner as a person without a disability. A person’s ability is just another layer of their identity. I’ve learned to embrace my ability and be proud of who I am. It took me a while, but I did it. Hopefully, others in a similar situation, learn to do the same.

Instead of erasing invisible disabilities, let’s make them visible through discussion.