National Invisible Chronic Illness Awareness Week

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Privilege & Prejudice:
disabled parking with an invisible illness

Much has been written about the difficulties of living with an invisible illness or disability. Well-meaning friends and acquaintances who say, "But you look good" can touch off a sense of isolation and the feeling that no one understands what you're going through.

The word disability is defined in the dictionary as "a disadvantage or deficiency, especially a physical or mental impairment that prevents or restricts normal achievement" or "something that hinders or incapacitates." However, our visually oriented society may not take the time to look beyond appearances. People tend to believe what they see; and if it can't be seen, it simply doesn't exist.

When our lab tests appear "normal" and people keep telling us we look good, some of us with Chronic Fatigue Syndrome or Fibromyalgia may even have doubts about our own illness. These feelings are familiar to many of us who have been sick for a significant period of time. But sometimes having an invisible disability can touch our lives in unimagined ways, triggering new hurts. I'll never forget the day it first happened to me.

It was a clear, sunny day and the weather was glorious. Yet despite the sunshine, I was struggling with excruciating fatigue. I needed to go to the bank and I dragged myself on this one errand, knowing that as soon as I finished, I could return home and lie down. I pulled my car into the parking space closest to the building, between those blue lines that indicate parking for the disabled or handicapped. One of the privileges I have come to count on in coping with my illness is my blue disabled parking permit. When doing an errand or two would be an insurmountable task if not for the ability to park close-by, the blue tag I hang from my rear-view mirror allows me to function in ways I otherwise could not.

As I got out of the car, a woman approached me. "I hope you feel good about parking there," she said sarcastically. I was caught off guard, and responded dumbly, "What?" and looked at her, not sure if I had heard her correctly. "I hope you're happy, " she said, "taking a space that's for the handicapped." My heart was beating furiously. "I do have a permit," I stammered. "Well, " she said, disdain all over her face, "you look like you can walk fine to me—you're about as handicapped as I am!"

I was stunned. I stood there mute, horrified, but unable to even defend myself. It wasn't until she walked away that the tears began to roll down my face. I started to think about all the things I could have said—should have said—how I might have made her understand. Instead, I felt ashamed—that my disability is not apparent—and I felt crushed by this woman's cruel judgment of me when she had no idea how much I was suffering.

I now know that this happens to lots of people. I've heard many stories like mine about people with invisible disabilities who are accosted by "do-gooders" intent on protecting the rights of those for whom the parking spaces are reserved. In an essay in the Los Angeles Times, Connie Kennemer—who suffers from Multiple Sclerosis (MS) and had a similar confrontation—writes, "I feel violated by a self-righteous and judgmental society that narrowly defines disability. I am not in a wheel chair. My handicap is hidden. Do these facts eliminate the possibility that I share the same limitations as those who are visibly disabled?"

For many with CFS/FMS or other invisible illnesses, that blue permit allows us to live our lives more "normally" by helping us complete seemingly easy tasks—like grocery shopping or a stop at the dry cleaners—that would otherwise be exhausting, extremely painful, or completely overwhelming. Says one writer who calls herself the Invisible Disabilities Advocate: "these spaces do not make life easy, they make it possible."

Errands like these may seem trivial to some, but they are precious and essential to those of us who struggle with illness and disability on a daily basis. Writes Kennemer, "I want to shout at the world, 'give me a break! I'll give you this handy placard if you'll take my disease! Deal?'"

While it may not be possible to make sure everyone is knowledgeable about invisible disabilities, we can take care of ourselves. Many people who sorely need a disabled parking permit hesitate to get one for fear of confronting the ignorant reactions of others. Others who do have permits hesitate to use the very privilege that was designed to assist them. Why do we feel ashamed? Wouldn't we readily give up this privilege if it meant having the health and energy we used to have? We must stop feeling guilty about our limitations, in order to do what we need to do to live the fullest lives we possibly can. If you feel you need a disabled parking permit, your doctor can usually help you with this; or contact the vehicle licensing agency in your state to find out how to apply.

In all likelihood, I'll continue to wrestle with others' perceptions of my apparent "good health." But the next time someone confronts me and my blue placard, I'll be prepared. On this site's message forum, a member posted a letter to Ann Landers written by someone who'd had back and knee surgeries, but looked to be healthy. One day when she used her parking placard in a handicapped space, a man approached her and said, "You certainly don't look handicapped to me. You should not be parking in that space." She replied, "And you, sir, look intelligent, but I guess looks can be deceiving."

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By Lisa Lorden, reprinted with permission of the National Fibromyalgia Association, 2238 Norht Glassell Street Suite D, Orange, CA 92865, 714-921-0150, fax 714-921-6920. Visit their web site!