Nothing is more important than
empathy for another human being’s suffering.
Not a career. Not wealth. Not intelligence.
Certainly not status.
We have to feel for one another,
if we’re going to survive with dignity.”
– Audrey Hepburn
Living with an Invisible Disability
If I had a dollar for every time I’ve heard – “But, you look so good. I can’t even tell!” – I’d own my own private island in the Galapagos’. But sadly, I don’t. What I do have is a myriad of experiences, that when compiled, have ignited a personal passion to educate those around me about living with invisible disabilities. Simply put, an invisible disability is one that can’t be seen. And my disability, Multiple Sclerosis (MS), is currently invisible. While I assumed it would be relatively easy for me to straddle the line between disabled and able-bodied – it wasn’t. It still isn’t. And that’s because the rude comments, quiet judgments, awkward stares, and inappropriate questions never stop. People just can’t seem to help themselves.
The question of being disabled enough is one I’ve pondered for the last few years, and it’s a question I still don’t have an answer for. Invisible illnesses are hard. I feel like I’m either constantly defending and explaining myself, or downright proving my illness to others with my blue handicapped parking placard in-hand. Having lived with MS for almost a decade, I can tell you from personal experience that airports are the most anxiety- and imposter syndrome-inducing spaces I’ve found myself in. And that’s because I personally identify as a woman living with a disability, regardless of how I look, but no one else does.
As a former National Wheelchair Basketball Association player, and current coach for the only women’s wheelchair basketball team in California, I’ve traveled cross-country with the team on multiple occasions. On one such occasion, I walked to the disabled check-in counter and asked the attendant to check my bag containing medical equipment. It didn’t go well.
Attendant: “Hello, how may I help you today?”
Me: “Hi, I need to check my bag and it has medical equipment in it.”
Attendant: “This is only for disabled people.”
Me: “Yes, I understand. I still need to check my bag; it has medical equipment in it.”
Attendant: “Well, I can only check your bag here at this counter if you personally have a disability. Are you the coach or a
Me: “No, I'm not the coach and I'm not a caregiver. I have a disability.”
Attendant: “I’m sorry, it’s just…well, you just…ummmm…you don't look like there's anything wrong with you.”
Me: “I have Multiple Sclerosis. It’s an invisible disability. Would it be easier if I went over and got into my wheelchair
and then rolled back over here to check my baggage with medical equipment?
Attendant: “There’s no need to take that tone or get angry, ma’am. Hold on. Let me go get my manager.”
Me: “I'm sorry. I’m just trying to check my bag.”
This scenario played out in the terminal, with hundreds of onlookers, all privy to the exchange and anxiously awaiting the outcome. I was so uncomfortable. Would they believe me? Would they think I looked trustworthy enough to let me check my bag? Would all of these people stop staring and go on their way once this exchange ended? I could feel the tears welling up in my eyes and rolling down my cheeks, as the manager finally came over, apologized profusely for the attendant’s behavior, and checked my bag immediately. For just one short moment, I felt vindicated. Unfortunately, that feeling never lasted long.
If you want to learn more about living with an invisible disability, don’t miss “Am I Disabled Enough?” – the very first episode of the brand new Incluse This! podcast, launching January 6, 2020. This inaugural episode brings my own personal experiences of misunderstanding and ableism to life, as they’ve helped shape the advocate and activist I am today. I hope you’ll join the conversation!
Click here for more information about the Incluse This! Podcast.
ABOUT THE AUTHOR
Sarah Kirwan is the Founder and CEO of Eye Level Communications, a California-based company dedicated to having the critical conversations necessary to connect communities and drive positive social change for people living with disabilities. She is also the host of the Incluse This! Podcast, a movement for disability equity, that aims to amplify disabled voices, highlight shared experiences, and work alongside disability allies to unify the disability community.