Save the Date for DiversityInc's 2016 Top 50 Event

April 19, Cipriani Wall Street

 

Register Now

‘But You Look So Good!’ and 7 Other Things NOT to Say to a Person With a Non-Visible Disability

If you have a friend, relative or coworker with an illness or disability that isn’t obvious, you may think you’re doing the right thing by saying he or she “looks so good.” You can’t even tell the person has a disability, and that’s a good thing, right? Wrong.

Why do people with disabilities take offense to this comment and others like it? Ninety-six percent of illnesses are invisible to the average person, according to invisibleIllnessweek.com. To comment on a person’s outward appearance dictates, intentionally or otherwise, that they should feel the way they look: just fine.

However, non-visible or chronic illnesses, such as diabetes, mental illness, lupus, multiple sclerosis and fibromyalgia, can be debilitating.

“The term ‘invisible disabilities’ refers to a person’s symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc., that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury … and are not always obvious to the onlooker,” according to The Invisible Disabilities Association. “A person can have an invisible disability whether or not they have a ‘visible’ impairment or use an assistive device like a wheelchair, walker, [or] cane.”

 

Keeping a good game face is required in corporate America, as it is considered unprofessional to bring personal problems into the workplace. But looking good and feeling good are two very different things–and the impact of a disability or illness is as much psychological as it is physical. From the glares people with non-visible disabilities get after parking in a handicapped spot to the “You’re so lucky you get to stay in bed all day” comments, the ignorance of the limitations of life with a chronic illness or disability can hurt as much as the actual pain.

Open Mouth, Remove Foot

“Comments that compare the appearance or ability of a person with a disability to a person without a disability have the same underlying message as saying to a woman, ‘Your report was well done, for a girl,'” says Susan Henderson, managing director of the Disability Rights Education and Defense Fund (DREDF). “We understand the impact of that statement on our daughters and our culture–the same is true for comparative comments about disability.”

Josie Byzek, managing editor of New Mobility magazine, has multiple sclerosis. Over the course of her disease, she has heard more than that she “looks so good.”

“I also get the ‘Well, everyone has memory problems as they age,’ and ‘That happens to everyone,’ and lots of other stuff that’s supposed to be comforting but is actually awfully minimizing,” she says.

Other real-life hurtful comments that should not be uttered to a person with a disability, and why:

  1. “It’s probably just stress.” This undermines a diagnosis given by a qualified medical professional and makes it seem as though the person with a disability is exaggerating.
  2. “My [insert relative] had that, and she manages just fine.” The effects of a disease can and often do manifest themselves differently from one person to the next. Measuring the extent of a person’s disability against the condition of another person is insulting.
  3. “No pain, no gain!” This cliché does not apply when it comes to disability.
  4. “It’s all in your head.” This is especially infuriating for people who struggled to get a diagnosis for their symptoms. Just because symptoms are not visible to others doesn’t mean a person doesn’t have an illness or disability. Leave the medical interpretations to the experts. This occurs frequently for those with mental illnesses. According to the Mayo Clinic, “To some, the word ‘mental’ suggests that the illness is not a legitimate medical condition but rather a problem caused by your own choices and actions.”
  5. “You’re just looking for attention/pity.” Hardly. Many people think that those with disabilities are helpless, broken and weak. The stigma is one that newly diagnosed people often have to grapple with in their own minds, which makes it even more hurtful to hear this from other people. But the stigma is wrong.
  6. “You’re here! You must finally be better.” This fallacy can be maddening. For those with chronic illness, there is no cure, and hearing a comment such as this one proves that the illness is not understood–and that no effort was made to understand it. Becoming accustomed to an illness or disability is a personal journey that everyone makes at his or her own pace.
  7. “I really admire your courage/how you pretend nothing’s wrong.” People with disabilities learn to adapt their lives around their disability. It is not a show of courage or denial to carry on, and to insinuate such is offensive.

Mobilization

Since 2002, National Invisible Chronic Illness Awareness Week has been recognized nationally each year to unite and mobilize people with non-visible disabilities and illnesses and their allies to educate government, healthcare companies, and the general public about the 133 million people living with a chronic condition. That number is expected to increase by more than one percent a year to 150 million by 2030, according to a study for The Robert Wood Johnson Foundation, and 42 million of those will be limited in their ability to go to school, to work, or to live independently.

 

This Means You

If you think this won’t be a concern until old age, take note: 75 percent of people with chronic conditions are younger than 65.

One of the biggest obstacles in the disability community is the attitude of the temporarily able-bodied. When Lawrence Carter-Long, director of advocacy for the Disabilities Network of New York City, gives lectures to college students, he asks, “What is the difference between a person with disability and a person without?” After getting the usual answers–having a wheelchair, using a cane or a hearing aid–Carter-Long reveals the real answer: “About five seconds.”

“Most of the problems regarding access have more to do with proximity than with malice. If it’s not you, it could be your brother coming back from Iraq, it could be your aging parents, it could be your niece being born with a disability,” he says.

Carter-Long and other disability-rights advocates urge action by those who think “it’s not going to happen to me” so that when disability does affect you, access to basic needs–such as housing, employment, healthcare, assistance–won’t be a problem.

Byzek says, “The greatest gift the independent-living and disability-rights movements can give our society is the freedom to just be people. We’ve created a society that wants people to adjust to systems. This is backwards. SYSTEMS should adjust to PEOPLE. We come along with our limps, our canes, our wheelchairs, our dodgy eyesight, our brilliant minds wrapped in fatigued bodies and say, ‘Hey, can you just wiggle this rule?’ and are becoming adept at pointing out how this is actually civil rights.”

She continues, “We have the right, as citizens, to participate fully in our own society. What would happen if everybody had the ability to wiggle their environment, our systems, to make their lives easier? We’d be a happier, more relaxed society. We’d have fewer stress diseases, we’d live longer, we’d be more productive.”

10 Comments

  • I agree with most of this article, but wanted to add that I appreciate when someone says they admire my courage. It IS an act or courage to carry on! It shows they recognize that it hasn’t been easy and they admire my determination.

    • Courage implies a choice to continue or stop, to stay or to go. I’m not aware of being offered a choice.

      • Cherokee Nation

        Death is an option

        • Luke Visconti

          I cut your other comments, I want to post this one because it’s the least offensive and I wanted to call you a jackass in public. Go back to reading conservative50plus.com, where one of your other comments was lifted from. Nothing you post here will end up on this website. Luke Visconti, CEO, DiversityInc

  • Going off of #4 and #5- As an individual with a mental illness, please acknowledge that toughening up or “getting over it” is not something we can just do, or it wouldn’t be considered an illness. You wouldn’t tell someone in a wheelchair that if they just stop letting their disease control them, they could walk just fine.

    The hardest part of having a mental illness is trying to explain what is happening to you so that other people understand the depth and breadth of what is happening to you. Depression is not like being a bit weepy, anxiety and paranoia aren’t like being worried. Mania isn’t like being really happy.

  • Danielle Gauthier

    “I really admire your courage/how you pretend nothing’s wrong.” People with disabilities learn to adapt their lives around their disability. It is not a show of courage or denial to carry on, and to insinuate such is offensive.

    I so agree with this, as the intonation used and the look on strangers’ faces always seriously smack of PITY when they make such statements. Store employees do the same thing each time I shop in their establishments. It’s unfortunately the closest shopping center to my home, otherwise you can bet I’d do my shopping elsewhere if I could. Quite frankly, my fondest wish would be for everyone to just mind their own business and pretend I’m not there, so I can enjoy my shopping trip.

    • Luke Visconti

      In general, I agree with your comments. I don’t feel particularly brave, I just want to enjoy my life as much as I possibly can.

      I do think, sometimes, that people want me to be brave and say everything’s OK, mainly because they’re afraid that what happened to me is going to happen to them, and if it does, that they wouldn’t have the strength to go on. It also occurs to me that with 600,000 people a year having a stroke in the United States, that I see precious few obvious stroke victims out in public. I’ve been approached by a couple of people who asked, “When did you have your CVA?” I have no problem discussing strokes and rehab.

      On the other hand, I’ve had several confrontations with people I know are standing in my way purposefully. One woman looked me in the eye as I was awkwardly trying to walk past her without bumping into her (I’m partially paralyzed on my left side and walk with a cane); as soon as I was going to say “Excuse me,” she made a point of ignoring me by looking the other way and launching into a discussion of her frosted tips with another woman. So instead of being polite, I quietly asked, “Would you please get the f*** out of the way?” Her mouth hung open, but she did move. I didn’t add that the frosted tips made her look like Guy Fieri—which isn’t a good look on anybody. Luke Visconti, CEO, DiversityInc

  • Danielle Gauthier

    Firstly, I’m happy to see that you are recovering from your stroke. You are in my thoughts and prayers.

    I agree with your comments. Most people are indeed afraid that it will happen to them and that they won’t know what to do. I personally tell them that if they have no choice, they are going to do what needs to be done, otherwise their life is going to be a miserable one. We have two choices in life, either to be happy, or to be miserable. Yes, it’s scary, and it takes work and especially determination. As Darryl Patridge, a young man who had six operations to his damaged ankle and left him in horrible pain, and who recently decided to have his lower leg amputated, stated that the best thing you can do is accept your situation as soon as possible. He was so right. That was the very first thing that I did and it was the best gift that I could have given myself. I left no room for self-pity to poison my life. I have since found numerous tricks to get things done which have given me my self-esteem back. As I was taught in my Dale Carnegie course, you need lemons to make lemonaide. I think it has to do with how much you want to regain control of your life. As for being tripped up in parking lots, it happens to me a lot as well. No matter how much I try to avoid people who are headed straight for me, they want to impose themselves on me to such an extent that I have to get downright angry to make them understand that they are in my way and causing me problems instead of being helpful. Educating people in my neck of the woods is like dealing with a tsunami using a soup spoon. But, it has to be done. I guess this has become my newest purpose in life.

    Take good care of yourself. I am sending good thoughts, prayers and good vibrations your way.

    • Luke Visconti

      Back at you, Danielle. Please let me know if you’re ever in my neck of the woods; I’d love to have a cup of coffee with you. Luke Visconti, CEO, DiversityInc

  • I’d like to add one to this list: “You’re so lucky to have that scooter/power chair. It must be so nice to not have to walk everywhere.” My mom has MS, and she gets this ALL THE TIME. While I understand that people are trying to find a humorous way to start a conversation, it pisses us all off. My mom would trade her mobility devices with an able-bodied person in an instant if she could walk. She doesn’t have them so she can zip around for fun and games (except for that one time we were scooter racing down the street…)or because she’s lazy. She can’t walk short distances without a walker, and long distances are out of the question. Those comments are thoughtless and hurtful.

    Luke, so glad to hear that you continue to recover from your stroke! I won’t say stay positive (as my mom has told me, everyone is entitled to a pity party sometimes, and there may be days you can’t help being angry or depressed) but I will say stay determined, stay committed, and continue to embrace all of the support you get. :)

Leave a Reply