Invisible Disabilities: 90% of Disabilities are not Visible

sara at school

By Alexis Snyder | We have all heard the expression, “Never judge a book by its cover.” In other words, don’t form an opinion of something or someone by first sight. But do we really understand what this means, or how this principal applies to our judgement of people? Our parents and teachers teach us to look beyond appearances when accessing someone’s character. Society tells us to be open minded and think before we pass judgment. So most of us try to be an upstanding citizen and not judge without the whole picture. But what crosses your mind when you see a person park in an accessible parking space and then walk to the front door of the building without a wheelchair or cane?

What does a person with a disability look like? We are visual learners by nature, looking for clues that help us make sense of the world. We believe what we see and are cautious about believing something we cannot see. We like order and definition to organize our lives. We are not born learning to “think outside the box.” It’s only logical then, that we associate disability with visual clues like a wheelchair, a cane or crutches or perhaps a seeing eye dog or hearing aid. Even more logical that we equate physical disability and mobility issues with the use of a wheelchair or other apparatus when the universal and international symbol for disability is a logo of person in a wheelchair. Most often “handicapped” spaces in a parking lot are marked with this universal symbol leaving many people to deduce that these spaces are intended only for people in wheelchairs. In actuality this logo signifies an accessible space and that there is “accessibility” to ramps and shortened distances to accessible entrances without obstacles. So I ask you again, what crosses your mind when you see a person or persons, park in a spot marked with this logo and get out of the vehicle and walk? Do you think surely this person must at least start limping or show difficulty in walking if they do not use a wheelchair? What if the person(s) look seemingly healthy? Do you assume they surely must be violating this space?

90% of all disabilities are not visible. Millions of Americans are living with chronic illnesses and physical limitations. But despite these alarming numbers many people living with these invisible disabilities are continually judged because they “look so healthy.” Such is the case for my 12 year old daughter. She lives with an invisible disorder that causes fatigue, muscle pain and weakness, and problems with regulating her body temperature with exposure to heat and cold, to name a few. On the outside most days she looks happy and healthy. You see her on good day at school, walking short distances between classes, smiling and laughing with her friends and even playing tag at recess. What you don’t see is that my child can’t keep up with yours. She takes lots of breaks and is skilled adapting the way she plays to conserve energy. You don’t see that she can’t climb stairs without pain and uses the elevator or that a simple fall can mean months of recovering from a muscle injury. You don’t see that a field trip or an outing to the mall or museum is an adventure…. You don’t see the days where all she can do is lay around or sleep, where talking with her friends takes too much energy, where eating just isn’t worth the energy required. In many ways I’m glad that you do not see my child’s illness, but just because you can’t see it doesn’t mean it’s not there.

So what about those good days…why do you see us occupying an accessible parking spot for my daughter if she is having a “good day.” Well, quite frankly having a “good day” is a very complicated day of planning and organizing ways to conserve energy and avoid climbing stairs and other obstacles. It also means limiting exposure to hot and cold temperatures. The difference between a “good” and a “bad” day can mean as little as one extra block of walking, or a couple of minutes in the direct sun. There are a slew of other disorders causing folks inflicted with them to utilize accessible parking-folks with breathing problems, heart conditions, bone and joint issues and chronic pain. Could you pick these people out of crowd? Would you judge them using accessible parking or assume the placard they have for parking there must be fraudulent?

Our family has come accustom to hearing parents at school, who thought they were making harmless comments, say thing like, “You’re so lucky to get the best parking spots.” We are not lucky and the “best” parking would be home in our driveway with our child walking back and forth to school independently. Until recently these were the only seemingly “harmless comments” we had dealt with. On a routine to trip to pick my daughter up from school I was literally stopped in my tracks by another parent on my way into the building. He accused me of handicapped parking abuse. He wanted to know how many people in our family had a disability, because as he went on the say, he has seen me as well as my husband and his parents, use a handicapped placard. Now of course there is no way for him to know if any or all of us have a disability that may not be readily apparent and seeing multiple users he assumed something fraudulent was taking place. But he also never stopped to think that the person with the disability was the one being picked up from school and not the driver. Not having time to give a lecture on invisible disabilities, I simply asked him to think about what someone with a disability looks like and also informed him that my family should be of no concern of his. He went on to tell me it was his business as a “concerned citizen.” A concerned citizen should also be an educated citizen who thinks before he speaks and never judges a book by its cover.

8 responses to “Invisible Disabilities: 90% of Disabilities are not Visible

  1. Thank you for sharing this article, Milena. As an African woman and polio survivor married to a U.S. citizen, and living in my own country most of the time. I really appreciate all the access given to people with disabilities in the U.S.. We have never been in the States long enough at one time to go through the process of getting a handicap placard, so are not able to take advantage of the closer parking. But all the other access helps are wonderful. I know many people have worked very hard for decades to raise awareness and get the access granted all over the U.S. And it is wonderful that the awareness campaign continues. This article makes a great point – you can’t always discern a person’s disability by what you are able to deduce in a moment of time. I have a dear U.S. friend, a young woman, who suffers from a chronic fatigue condition. She lived with me in Africa for 3 months and so I learned a lot about how she manages her daily activities to be as strong as possible for the things she is determined to accomplish. Some days she was unable to leave our apartment, but many days she went to the office with me and worked her mission to help strengthen women’s associations here. No one she met with would have guessed what a struggle it was for her to do all that she was doing. They could see my handicap, but had no idea what she was dealing with each day. We both have dramatic physical limitations, but unless someone were to come visit us on one of her really bad days, when she was in her room resting to gain strength, no one would have guessed this beautiful, extremely capable young woman had any physical challenges.

    Again, thank you for continuing to raise awareness about people with disabilities. Your campaign is reaching much further than you might imagine.

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    • Thank you, Neema! The work you do to make the world a better place is worthy of Nobel Prize. All at Convaid wish you continuing healthy, strength and happiness. If you have an initiative that requires donation of wheelchairs, please reach back to me. The best to you always!!!

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      • Thank YOU for your work! I would love to put together an initiative that includes wheelchairs for my sisters and brothers in east Congo! May we talk about that?! I have been invited to speak at UNESCO in Paris on Dec. 3 for International Person’s with Disabilities Day. I feel honored. Please, let’s be in touch! In Love, Neema

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