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Invisible Disabilities

People in wheel chairs, or on crutches, or with an oxygen tank or seeing eye dog deal with their injuries/disabilities every day. They also deal with the responses of the people with whom they interact. These responses might vary from insulting, though well-intentioned attempts to help to cold indifference. On average, most people are considerate of the needs of people with noticeable disabilities. What happens though, when that disability cannot be seen? What about the many people who suffer daily with invisible disabilities? People with severe limitations on their activities for work, play, or simply getting through the day? If you can’t see a disability, are you likely to treat it with the same regard that you would an obvious disability? Would an employer treat the two the same? Would an insurance company? A neighbor? A family member?

Millions of people suffer with invisible disabilities…fibromyalgia, migraine, renal failure, sleep disorders, diabetes, severe depression, attention deficit disorder, or any of the many other potentially debilitating psychiatric disorders. Their limitations are real. Pain. Fatigue. Dizziness. Inability to concentrate. Sensitivity to light or sound. Chained to their medication to avoid painful or even lethal setbacks. As real as these conditions and their associated limitations are however, there still exists a resistance to fully recognize or respect their truly disabling nature. If a person with an obvious disability goes to the grocery store, or out for dinner, it is unlikely that the validity of that disability will be called into question. The same cannot necessarily be said for those who suffer with invisible disabilities, however. More often than not, when a person suffering from an invisible disability exhibits “normal behavior” many people tend to judge them, and even accuse them of faking their condition, or the extent of their limitations.

Yesterday a news story broke that could potentially end Michelle Bachmann’s 2012 presidential run. Normally I would be overjoyed to hear this news. It’s no secret that I don’t exactly love this candidate. What does Michelle Bachmann’s presidential run have to do with invisible disabilities, you ask? The story is centered around the question of whether Ms. Bachmann’s debilitating migraines could potentially render her unable to perform the duties required of a U.S. President. In the wake of this breaking news, I find myself actually identifying with this woman. A woman with whom I disagree on just about everything.

Ms. Bachmann now has, and has had, a staunch group of supporters. She also has a great number of individuals and groups opposing her. I, myself, could not fathom having this woman as president. However, my personal politics aside, this question is one of huge import, and for me, great personal significance. The story was allegedly leaked by some of Ms. Bachmann’s own staffers who had become concerned in recent months that she could, in fact, be dealing with a disability so severe that she would not be able to carry out the essential duties of the presidency. How then, has someone suffering such a severe disability managed to hide her incapacitation from her constituents for so long? The answer is not only simple, but more common than most people could ever imagine. Migraines, like so many other disorders, are invisible disabilities. From the perspective of the average observer, Michelle Bachmann, like millions of other people suffering from invisible disabilities, manages her life, and her pain, behind closed doors, quietly, in secret. She deals with hand she has been dealt, and walks out into the public with a strong face, no matter what she is feeling inside. And given the nature of this latest news story…it’s no wonder why she does so.

So where does that leave her, or the voters or the rest of us who suffer from invisible disabilities? We have laws about discrimination based on disability. But there are also protections for potential employers (in this case, the American public) to ensure that any candidate for any job must be able to adequately perform the essential, core duties of the job, with or without reasonable accommodation. (“A reasonable accommodation is any change in the work environment or the way things are usually done that gives an individual with a disability an equal employment opportunity.” – http://www.ada.gov/). From personal experience I know all too well how invisible disabilities can affect both job performance, and the ability to secure or maintain a job.

I suffer from severe, debilitating migraines as well. I can say with frustration and honesty, that this condition has rendered me completely incapable of performing my job in the past. To boil down decades of medical history to just the relevant facts, suffice it to say that I began to experience migraines as a teenager. These painful events proceeded to worsen over the years until August, 2000, when what started out as a “normal” migraine turned into an intractable, daily headache that has not ceased for even the smallest moment. It is not anything that most people can see. I don’t have bandages or assistance of any kind, but this condition has limited me in many significant ways. I cannot drive at night, lie down, enjoy many foods on a long list of triggers, take any kind of hormonal birth control, use the computer for long periods of time, plan any activies when there is a storm coming or going (due to sensitivity to barometric pressure), plan a full day of activity without significant breaks, go to loud restaurants or bars or concerts without ear plugs, exercise for anything more than short intervals, have a candle-lit dinner.

Several years ago I found myself, after many years with my company, at home, unable to work, collecting disability benefits. First, short-term. Then long-term. Eventually I was laid off. I felt not only frustration and uncertainty about my future, but a loss of independence and a sense of defeat and hopelessness. Previously I had led a very successful career. I had been a subject matter expert in a highly competitive field; someone called upon for advice and important decisions. I had a great sense of accomplishment and competence. My medical condition however, seemed to rob me of those things. After several years off from work and a great deal of medical and emotional therapy, I returned to work. Not in my field of expertise, but in a position that allowed me to reenter the workforce, get my bearings, and build my confidence. When I applied for my current position I said nothing of my medical condition. I hid my disability and current physical ailments from my potential employer in the same manner that Michelle Bachmann, and a long list of U.S. presidents have done. In the few months since I have been working I have been forced to face the continued effects of my condition. I am certainly better now than I was years ago when I was forced to go on disability. But many of the ways I had learned to manage my condition are no longer options for me. I cannot take breaks when I need to. I cannot stay away from fluorescent lights. I cannot take certain medications when I need to. And what I feared most, that my migraines would again interfere with my ability to do my very best at work, has come to fruition. It is not only my own sense of inadequacy, but my superiors’ opinion of my abilities and my commitment to my job that are burdening me.

In addition to enduring this pain in silence, I am faced with uniformed judgment. I say uninformed, because my superiors do not know why I sometimes call in sick to work, or have to leave early, or forget things or fail to accomplish all of my tasks in a set amount of time. I could tell them. I could have told them when I interviewed. But I did not want to be judged the way that Michelle Bachmann is being questioned now; I chose to hide my ailment so that I could be judged on my merits and qualifications rather than my physical limitations. I do not claim that this silence is fair. To my employer or even to me. Perhaps they did have the right to know before they hired me. Perhaps I have the right to seek reasonable accommodation. But what might seem like easy answers become very complex when the far-reaching effects of invisible disabilities are considered. While employers shy away from saying no to a blind person, or a hearing impaired person, or a person in a wheel chair, invisible disabilities are treated quite differently. There is a great deal of judgment. There are accusations (spoken or unsaid) that the disabled person is either lying or exaggerating or even just trying to get out of certain responsibilities or seeking special treatment. Any normal activity is often seen as proof that the disability is not true…”Hey, I saw her at the movies the other night…she didn’t seem too disabled to me!”  While our societal sensitivity to visible disabilities adequately protects many visibly disabled people from these judgments, the same cannot be said of our sensitivity, or lack thereof, to invisible disabilities.  What the person commenting on the movie-goer might not have stopped to consider is the fact that perhaps she had had to wait to see that movie for a day when her pain was lower. She didn’t have the freedom to see it whenever she wanted. And while she watched she had used ear plugs and sun glasses to mitigate the effects of the light and sound in the theater. And when she went home she was in so much pain that she had to take medication that makes her feel terrible. But she goes to the movies anyway, not to be a martyr or to prove that she can, but because when you are faced with limitations, you do what you can to lead as normal a life as possible, even when there are negative consequences.

Returning to the dilemma facing Michelle Bachmann and her constituents, there is certainly a vast difference between my situation and hers. The well-being of our nation and the world does not rest on my ability to do my job. But if elected, it would rest on hers. Though she claims her migraines are not an issue, and while I would like to say that it is completely unfair to disqualify her based on her medical condition, I don’t believe it is, even with my own experience in mind, or perhaps even because of it. I know as well as anyone that this condition is not only real, but can at any time, under any circumstances render even the strongest individual incapable of rational thought, concentration, decision-making, even simple movement. And while those things are factors for most any job, they do not carry the same significance that they do for the president of the United States. In the past, Bachmann’s migraines have caused her to be absent from the Minnesota Senate for up to a week, miss multiple Hosue votes, and frequently retire to her congressional office with the lights out waiting for the attack to pass. Personal politics aside, the truth of the matter remains that if Ms. Bachmann’s condition is as severe as it has been reported, it is unlikely that she is physically capable of successfully carrying out the relentless and unforgiving responsibilities of being the president of the United States.

For me, it raises questions about how I will approach future job-seeking efforts. Perhaps I will be forthcoming about my medical condition and honest about the reasonable accomodations I will require. I will risk losing many opportunities, but perhaps find myself suffering less, and accomplishing more when the right opportunity, and the right employer come along. The same might be said for Michelle Bachmann. Politics aside, it could well be that this particular job just isn’t one that can offer the reasonable accommodations that her medical condition requires.

For the public at large, I hope this debate will open a dialogue about the unfair treatment of people with invisible disabilities. I hope that compassion will begin to replace criticism and distrust. I hope that everyone who suffers from disabilities, visible or invisible will be afforded the same respect and opportunities they deserve, and that they will be judged based solely on their merits, qualifications and skill. I hope I will live to see a day when those of us with invisible disabilities will not have to bury them behind lies to seek fair evaluation.

 

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