30 June 2012

Can You See Me: Invisible Disabilities and Discrimination

Margaret* is a kind woman. She is creative, loves animals and helps raise awareness of the diseases that affect her and the people she loves. In addition to sharing my diagnosis of fibromuscular dysplasia, Margaret also has pulmonary hypertension and diabetes. Her pulmonary hypertension specialist worked with her to file — and have approved — the state's official paperwork so that she could obtain a permanent handicap parking permit. 

But when Margaret went to the post office on Thursday, she experienced something that those with invisible disabilities unfortunately are all to accustomed to — discrimination. At the post office, an employee remarked that if Margaret was handicapped, she needed to use a cane. 

"I felt a mixture of emotions," Margaret said. "I was sad that someone would say that to me and make me question getting the permit in the first place. It was a hard thing for me to do to come to the decision that I needed to apply."

In Margaret's state, the qualification for obtaining a handicap parking permit fall under definition of a disabled individual. A person who has a cardiac condition with functional limitations according to American Heart Association standards is the very first item on the list of qualifications followed by those with respiratory conditions. Neither cardiac conditions nor respiratory conditions are visible — however they are no less real.

"I was sad that in some peoples' minds, one can only be be disabled if it is seen," Margaret said.

Only two of six of the state's qualifications for a handicap parking permit are those that can be readily seen and most commonly associated with disability — a person who has lost an arm or leg and does not have or cannot use an artificial limb; a person who cannot walk without the aid of another person, a walker, cane, crutches, braces, prosthetic device or a wheelchair because of the disability.

What are those with invisible disabilities to do?

Bringing about more awareness of the term invisible disability is a start, and doing this must address the public's habit of making sweeping assumptions. A person looks at another person and, based on outward appearances alone, makes a judgement. Chronic illness patients are all too familiar with variations on the frustration refrain, "But you don't look sick." Perhaps we don't. Perhaps our outside has not deteriorated like our inside. Perhaps we're out and about because it is a good day and we don't look or feel as sick as we are. The fact of the matter is that no one knows another person's full story, and no one can ascertain the full story based on appearances alone. 

When I was 25, I had triple bypass surgery. To explain the need for the surgery was enough of an endeavor — no, it wasn't heart surgery... no, it wasn't gastric bypass... yes, the doctors think I have a vascular disease... no, it's not due to a bad diet... no, it's not contagious. Even in the hospital, I was an anomaly in the vascular ward. Outside the hospital, when I finally was recovered enough to leave the house, my gauntness, slowness and bruised arms drew concerned and suspicious looks. Out to a restaurant for dinner one evening, my parents ensured I got a seat while we waited, which I did not give up when an elderly lady came in — an action that mortified my own sense of decency and, I'm sure, the others around me. But I felt as if had no choice. My need, though invisible, was great. 

I found myself in similar situations after having a stroke at age 28. I'd come home from the hospital with a walker. My foolish pride led me to leave the walker behind and instead cling to my husband's arm for balance when I had to go out in public. I was slow as molasses getting from one place to another. I went out of my way for ramps and railings to sturdy myself. It was the first time that I ever truly contemplated the Americans with Disabilities Act and realized how much more needs to be done to provide adequate accommodations. 

The vast majority of my stroke's effects were invisible, save for the drooping of my left eyelid — a physical feature those who are unfamiliar with stroke would fail to associate with its cause. My dogged persistence to appear "normal" made things harder than they had to be. Expending so much effort trying to keep up and keep my disability not only invisible but a non-issue was exhausting to the point of tears. 

That exhaustion is the risk that those with invisible disabilities face. If others do not see our disabilities as real, there is a tendency to play into the illusion. We don't want to seem a burden. We push ourselves too hard. We feel embarrassed to make use of our accommodations. And all our effort pretending — for others' benefit — that our invisible disability really isn't even there leaves us alone and suffering later when the job is done or the party is over and we overdid it because no one sees how we feel. 

Those of us with invisible disabilities must stand up for ourselves. If we can not be seen, we must at least be heard. We must speak out against discrimination and educate the public about the damage done by assumptions based on how we look. It's not about how we look. It's about who we are. And we are in this together. 


(* Indicates name has been changed.)

8 comments:

  1. i dunno, seems like when I speak up for myself it just makes it worse, I'm considered more of a lair than people think I am. I confess, there are times I've thought it would be nice to have at least something visible so people would believe me and I could get help

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  2. I feel the same way....

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  3. I wish that everyone could read this! I'm so tired of the stereotypical garbage. I keep fighting insurance companies because they look through my records, and there isn't anything that should be disabling. I have a progressive neurological pain disease! Believe me it's disabling. You just can't see my problem. I hide it well, always a wearing mask. I understand exactly was she is saying in this blog. I've been told, you should be glad you don't have something that can kill you. What kind of a remark is that. There are so many days when I wish it would. I have a handicapped placard, I wonder when the day will come when someone confronts me. I do my best to not use a cane, I push myself too hard. And I pay for it in the end, not them. Why? Why do we have to do this! I for one, am so tired of it. We need help to get the word out.

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  4. I was qualified for a permanent handicap permit a few months ago and have yet to move forward with obtaining it because I know it will look odd when I get out of the car with kids in tow in the handicap parking spot.
    It is as if its easier for me to go through a tachycardia, possibly Vtach, episode than to deal with possibility of people thinking I am abusing the legal right to such considerations.

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  5. My sister, tiny, pretty, even showy in her looks and style was dying of a lung disease, and the only hope was to get a lung transplant. To get the lung transplant, she had to be healthy. (I know...but so do you.) She also had to show the transplant committee that she was dedicated in her quest for health, that she was maximizing the capacity of her failing lungs, and that she was capable of after care, should the lungs ever appear from the tragedy of the death of a healthy person, Thus, she went to the gym everyday, dressed smartly for the weather, but never with clothing too weighty to throw her careful balance of protection and strain. Anytime she got out of the handicapped space to walk into the gym, she inevitably got "the look." She would simply say, "I have an invisible disability. Walk with me and let me explain." A chance to tell her story, and the story of many others ensued.

    She did get her lungs, protected and used them for 11 years, ever an example of power and self-advocacy. Use your story with pride and accomplishment; the people who matter will care and appreciate it.

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  6. Many if not most disabilities are invisible when one is sitting at rest. However, walking itself is a very visible function. It is this very visible function that is being judged when one parks in a handicap parking space. What disability/illness/disease/etc. one may have is not being judged, in fact, it's not even important information. What's important is that the function of walking is severely and permanently limited. There are many visible signs of severely limited walking: limping, shuffling, waddling, leg swing, stooping, dropped foot, stiff legged, dragging foot, toe walking, slow gait, heavy breathing, pain grimace, stopping/going, panting, etc. Everyone's gait will be abnormal if their walking ability is severely limited.

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  7. My son has a list of genetic problems, and health insurances & the state just see a paper with a name on it, and say he isn't sick enough to get more help, he hasn't been sick long enough for us to help you.. Instead they wait till he gets worse, or older.. I fight for him since he cannot do so himself.. It makes me sick that the people that are/was long time drug users get more medical help because of there bad choices and they do little as possible for my special needs child..

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"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha