I Am the Face of Disability, Even if I Don't 'Look' Disabled

Occasionally, friends, I get tired. I’m not referring to the fatigue that is common with my diagnoses. I am referring to the kind of mind-draining tiredness that comes from fighting the same battle. I am 32 years old and fully disabled. I have a handicap placard that hangs in my car. I have no shame in either of those facts, because there is absolutely nothing I can do to change my condition. However, I’m growing tired of defending my status based solely on the fact that I don’t look quite sick enough to fit others’ mental picture of disability.

So, I’m saying this now on behalf of myself and the entire disabled community. Every disabled person is the face of disability. Whether or not a person uses a mobility aid does not determine their disabled status. An illness that physically alters appearance is not required for a disability to exist.

Sometimes the face of disability is found at the hospital or in a treatment center. Disabled people often have complex medical needs that must be addressed in those types of settings. However, there are other times that the disabled go bowling or to a zoo. Just because a person has physical limitations does not mean they have abandoned all hope of ever having fun again.

Today, my car was parked in handicapped parking. Today, it was necessary that I utilize the aid of my placard, because I could not have completed my task successfully without accessible parking. However, when I returned to my car, I felt embarrassed. A couple in the car next to me stopped and stared. I immediately wondered if I was walking slowly enough to meet their approval. I wondered if they noticed I limp on my right side. My hip has started dislocating again, and it’s making me a bit extra cautious when I bear weight on my right leg.

Then, once I was in the car – still feeling the weight of their gaze as they craned their necks to inspect my disability placard – I felt ridiculous. I do not have to prove my disability to anyone outside the medical community. I did not ask to have a chronic illness. I did not choose to have joints that frequently dislocate. I didn’t special order my aneurysms because I thought they sounded fun. Why am I acting ashamed of something I cannot help?

I’m over it. I am tired of feeling embarrassed about something over which I have no control. I refuse to apologize for not looking “sick enough” for some people. I am the face of disability when I am standing and cheering for my favorite team, and I am the face of disability when I am sitting in the hospital waiting for more tests and procedures.

The encouraging part of this proclamation is that I know I’m not alone. There are so many other faces of disability throughout our world – faces who are sick and exhausted and frustrated. But also, faces who smile and laugh until their sides hurt. Let me encourage you to show your face. The face of disability looks like all of us who were dealt a difficult hand by life and still manage to smile.

If you want, join me in sharing your selfie on Twitter and Instagram with the hashtag #iamthefaceofdisability. The world needs to see us, because staying hidden is too exhausting.

Follow this journey on Crazy Chronic Life.