I am One of the Millions

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“Be kind to others. For everyone is carrying some kind of burden, you know nothing about.”

A visual society, we too often take to heart the adage, “Seeing is believing,” and sometimes make judgments not represented by facts. But, you can’t always believe what you see.

elderly-coupleCase in Point
On a recent trip to our local big box store, I found few vacant parking spaces available and ended up parking at the far end of the lot. A couple walked ahead of me. As we made our way to the store, we slowed to allow a woman to pull into one of the handicap parking spaces.

When the woman exited her car without assistance, I was struck by the couple’s reaction. Their indignation was almost palpable and the expressions on their faces, plain to read. How dare she, an able-bodied woman use a space designated for those with REAL disabilities. With heads shaking in disapproval, the couple glared and mumbled loud enough for her to hear. “You should be ashamed. What’s wrong, too lazy to walk?”

The woman’s face flushed. She turned away, sat back down in her car, and waited for them to pass. I could tell this wasn’t the first time this woman had experienced such behavior. Although the appropriate handicap placard hung from her mirror, this attractive woman bore no visible signs of disability, and therein lies the rub.

It’s possible she was taking advantage of a family members handicap placard. On the other hand, she may be one of the millions in this country who suffer from an invisible disability. And by that, I’m not implying it’s in her head. She didn’t make it up; she isn’t pretending, and she isn’t a hypochondriac.

Invisible disabilities are indiscernible to others. People with hearing or vision loss, chronic back pain and mobility issues are the tip of the iceberg. Chronic illnesses, cognitive disorders, congestive heart failure, lung disease, rheumatoid arthritis, lupus, or other autoimmune diseases are additional examples. [1]

The Americans with Disabilities Act of 1990 (ADA) defines disability, “as a person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or regarded as having such impairment.” [2]

Those who make snap judgments, as did this couple are ignorant of the facts. In the United States, 96% of people with chronic medical conditions will show no outward signs of their illness, and 10% experience symptoms considered to be disabling. [3] Yet, cars have been vandalized and people physically accosted for parking in a handicap space and all because they didn’t look disabled. [4]

The biggest reasons people react negatively to those with invisible disabilities is due to society’s expectations. Our culture was built on values of hard work, organization, and contribution to the community. We are also a compassionate people, yet individuals who can’t work or contribute are stigmatized. [5]

I don’t deny abuses of handicap placards occur; it does. In fact, abuse has become so rampant states enacted new laws. In my home state of South Carolina, a new law went into effect January of 2010 requiring every placard to have a picture of the person issued the card. In addition, all tags and placards for the disabled now have certificates to prove their authenticity. “Violations of this law are a misdemeanor punishable by fines of one to two hundred dollars or imprisoned for more than thirty days, for each offense.” [6]

The truth is; the impact of these diseases is life altering leaving many unable to work, socialize, or maintain normal day-to-day activities. The same activities taken for granted by most people. [7] But, for the those suffering from an invisible disease, the act of walking across a parking lot can leave them breathless, in pain, subjected to prejudice, unwarranted judgments and verbal or physical assaults.

A run to the local big box store for most people is just another errand, but for those with invisible disabilities it becomes an errand in emotional pain and humiliation. I should know; I am one of the disabled millions in this country. I am Sjogren’s.

Sjogren’s is an autoimmune disease in which white blood cells attack moisture-producing glands causing severe dry eyes, mouth, and dental problems. It may also cause complications to the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients with Sjogren’s experience extreme fatigue, joint pain and have a higher risk of developing lymphoma. [8]

Pain is my constant companion. Sleep eludes me and the fatigue can be so debilitating, the simple task of washing my hair becomes too taxing. Some days I don’t have the energy to move, but I force myself because I’m too afraid to stop. Allergic to most pain medications, I have no choice, but to suck it up and deal with the pain of my disease.

Invisible Disability graphicsIn the last two years, I’ve suffered hearing loss, seizures, blood clots, lung lesions, and pacemaker surgery. But, unless you’re a close family member or friend, you wouldn’t know this.

Welcome to my world.

When the more overt symptoms can’t be disguised, I stay at home. A proud, independent, and vain woman (I’ll admit it), I refuse to give in to this disease or the pain. When you see me out, you’ll find me dressed to the hilt, in full make-up, smiling, and eager to listen to your latest adventures or complaints, in spite of my pain.

I don’t primp for two hours each morning to impress the outside world; I do it for me. How I present myself is the only thing I can control these days, and even that has limitations.

Those of us who live with these invisible diseases would give anything to be independent, free of disease, without pain, or able to walk from the rear of the parking lot. We hate the looks of doubt, insults, real or implied and detest having to explain ourselves, especially to strangers.

In remission now, I no longer require a disability placard, but when the time comes again and it will, I will offer no apology. My disease, like millions, is not visible to you, and I refuse to put on a display of symptoms to make you more comfortable.

May I suggest, the next time you see someone park in a handicap space; please forgo the judgment and petty insults, regardless of how they look. They as I, would gladly trade our disease, pain, limitations, and even our convenient parking permit for your health, any day of the week.

Interested anyone? I didn’t think so.

Resources
[1] “Invisible Disabilities Information: What are Invisible Disabilities?” Disabled World. Retrieved 13 July 2012.
[2] http://www.ada.gov/ada_intro.htm
[3]  2002 US Census Bureau
[4]http://www.sun-sentinel.com/local/broward/fl-disabled-tag-20150102-story.html
[5] http://disability-studies.leeds.ac.uk/files/library/brookes-NUJ-Hidden-disabilities-Report-plus-Lena.pdf
[6] ] http://law.justia.com/codes/south-carolina/2013/title-56/chapter-3/section-56-3-1960
[7] http://en.wikipedia.org/wiki/Activities_of_daily_living
[8] http://www.sjogrens.org

I am One of the Millions was last modified: July 26th, 2016 by smgood
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14 Responses to "I am One of the Millions"

  1. George  Monday, June 1, 2015 at 21:13

    The ADA’s definition of disability has nothing to do with who does and doesn’t qualify for a disabled parking permit. Disabled parking permit qualifications are defined by state law/statue. For example, South Carolina’s first eligibility criteria is “an inability to ordinarily walk one hundred feet nonstop without aggravating an existing medical condition, including the increase of pain;”

    So under South Carolina law if you can walk over one hundred feet you don’t qualify.

    Reply
  2. tucsonmike  Monday, June 1, 2015 at 21:41

    On target. Walk a mile in the other person’s shoes and or mind your own business.

    Reply
  3. Bart  Tuesday, June 2, 2015 at 11:44

    Thank you, Sheila, for this well-written call for reason.

    Reply
  4. smgood  Thursday, June 4, 2015 at 14:46

    George,

    I appreciate the feedback, but as you noted, “an inability to ordinarily walk one hundred feet nonstop without aggravating an existing medical condition, including the increase of pain.” This is one of the conditions, if certified by the physician statement, which make a person eligible for a disability placard or tag.

    Pain is subjective, therefore, no one can presume to know the severity of the pain a person is experiencing. If a person’s pain increases with walking “a hundred feet, non-stop,” as in from a car to the store’s entrance, they will qualify as long as their Physician statement certifies it so.

    It’s up to the Physician to determine a patient’s level of disability. The DMV does not get into determining whether the patient can walk 100 or 105 feet. If the physician completes the certified application, the DMV accepts it as truth.

    I realize for some people, a hundred feet seems like nothing. For those of us who live in pain, it can seem like a football field away.

    Thank you for reading and commenting. Feedback is always welcome.

    Reply
  5. smgood  Thursday, June 4, 2015 at 14:47

    tucsonmike,

    Thank you for your succinct and accurate comment. I appreciate your feedback.

    Reply
  6. smgood  Thursday, June 4, 2015 at 14:49

    Bart,

    Thank you for reading and your comments. As you can tell, this is a subject close to my heart and all I hope for is that people will step back and consider another perspective.

    Reply
  7. Jean M. Cogdell  Thursday, June 4, 2015 at 18:15

    I wish I could covey my opinions on issues as well as this is written. As another one of the millions, I too can so relate. So many need stickers but don’t use them for dread of ignorant judgement. Well done Sheila. Thanks for speaking out on behalf of the many.@jeancogdell at Jean’s Writing

    Reply
  8. smgood  Friday, June 5, 2015 at 21:31

    You’re welcome. For all of those of us struggling, I hope this article will have a small impact.

    Reply
  9. Betty  Saturday, June 6, 2015 at 23:35

    Well said Sheila. A reminder to think before we criticize someone whose pain and disability, though not visible, are no less real.

    Reply
  10. Sheila  Sunday, June 7, 2015 at 17:50

    Absolutely Betty. We never know the burdens others carry. Thanks for reading and your comments.

    Reply
  11. Joyce White  Friday, June 12, 2015 at 16:50

    I’ve been suffering from pain for 20 years now. Couldn’t stand or walk very far. Recently I had my gall bladder removed and it was discovered scar tissue from appendicitis removal had wrapped around my gall bladder leaving me in severe pain when I stood up or tried to walk. I got many of those looks when I parked in handicapped parking space. Thank God I can walk Wal-Mart and from car to all over with no pain. I spent my prime in pain, but I feel reborn again. Thanks for your article.

    Reply
  12. smgood  Thursday, July 2, 2015 at 7:48

    Joyce,
    I’m so sorry you suffered so long in such dreadful pain. I’m glad you’re better and I as I, no longer require the placard. Those of us who suffer from things beyond our control, should never have to suffer from the ignorance of others. I’m glad you appreciate my article. I’ve always believed education goes a long way in enlightening others. Thanks for commenting.

    Reply
  13. SD Gates  Sunday, September 6, 2015 at 17:10

    Great post!!!! I have seen people behave this way, when a person in a sports car or some other flashy car parks in the Handicapped parking space. People are so quick to pass judgment without really knowing the full story. Here is my take on Handicap Parking spots. I am happy that I don’t need to use them, and I am more than glad to have the physical ability to park further down in the parking lot and I certainly don’t begrudge others for using them. I am grateful that I don’t need to and am empathetic to those that do.

    Reply
    • Sheila  Monday, September 7, 2015 at 12:37

      Thanks much SD for reading my article and commenting. My disease waxes and wanes, as do many chronic diseases. And, I shall never forget how difficult and painful it can become. There was a time I had and needed to utilize those designated parking spaces. I don’t now and have let my placard expire,but at the time, would have traded that perk for good health and the ability to walk with anyone.
      Thanks again for taking the time to visit, read and comment. Feel free to refer this article to others. I believe it’s an important message.

      Reply

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