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Also read: what not to say, disability, what to say, peer relationships, DREDF, Disabilities Network of New York City
Related
Disability Awareness Month Stories:
Terminology: What Should You Call a Person With a
Disability?
Making the Workplace
Accessible
How to Manage Disability at Work
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 InvisibleIllness.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 Advocate. "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
(See also: 6 Workplace Myths About People With
Disabilities)
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:
- "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.
- "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.
- "No pain, no gain!" This cliché does
not apply when it comes to disability.
- "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."
- "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.
- "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.
- "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
This year, Sept. 10-16 is National Invisible Chronic Illness Awareness
Week. Since 2002, the 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. Read the full
study.
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
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."
Readers' Comments
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Posted: Wednesday, Jun 17, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I have Hyperacusis, which is an invisible disability. I'm treated rudely when trying to explain to people I cannot tolerate sudden loud sounds, especially when it comes to children. People don't seem to understand it's not that I hate children, it's that I cannot tolerate noise that children will tend to make. Perhaps you can consider this in a future article, it really is amazing how people are so intolerant of something as simple as, loud noise hurts my ears. Jackie Yoshi |
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Posted: Tuesday, Jun 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I had a liver transplant nearly 5 years ago after hepatitis nearly put me away. Before and after my surgery I have been told "but you look so good" by numerous friends and acquaintances. I realize they mean well, but I could scream at times. I don't want to come across as some whiner, but what people don't realize is the pain and frustration that has come with my changed condition. I now have chronic migraines (3-4 days/week) triggered by all the medications I take. I cannot be nearly as active as I was, because exercise makes me extremely tired and will likely trigger a migraine. I take medications for: migraines (which make me tired); anxiety (which make me tired); fatigue when I am worn out from exercise and medications (which can also trigger a migraine); and for sleep depredation (caused by the meds have to I take to prevent organ rejection). At times I feel I need meds just to wake up and go to sleep. To keep myself in balance is a challenge. To ad insult to injury, I frequently have to deal with my insurance company to: make sure prescriptions are "pre-approved" and I have them when I need them (the insurance company could care less about getting meds to me that make life bearable); make sure I am reimburse for medical claims; and track an overwhelming number of claims. Yea, I may look good, but I often don't feel good. Then to tell me it's better than the alternative is just too much. I don't respond to that comment. David Misenhimer |
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Posted: Sunday, May 17, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability It is so true about the comment "If you walked in my shoes". I have a disability with my shoulder that I had operated on about a year ago. I had fallen, and broke my shoulder, and I had to have a shoulder replacement surgery.I have complications from the surgery and injury that may never be repairable. People have said hurtful things to me too, but I came to realize that some people are just ignorant, and they don't really understand what I have to put up with, like the constant pain, and the limited range of motion, and restless nights sleep, as nothing will help relieve the constant pain. I've had the constant pain, since the Injury, on April 18, 2008. I had the Surgery on April 29, 2008. I don't even tell my own sister, some of the things that I cannot do because of the limitations of my shoulder. I know if I told her, that she would say that it's not that bad, and I could do it if I wanted to. The truth is that I cannot do some of the things that I used to do, before the surgery. I just try to do the best that I can with what I've got. I keep up with my 18 shoulder exercises everyday too. I feel that the people that would understand my problems with my shoulder, are the ones that have gone through the exact same thing. Other people that have not gone through it,do not and cannot understand about it. This is the same with a lot of other disabilities too. If they haven't gone through it themselves, how can they really even begin to understand how the person with the disability feels,or about all the obstacles that they have to face everyday? Virginia Detroyer |
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Posted: Wednesday, Apr 22, 2009 Gay & Catholic: Confessions of My (Former) Guilt some of my favorites - you don' t look disabled .......... ........... but you look so healthy.......... ...........your'e doing fine.......... you'll be fine ...........why don't you just get a job?.......... ........... are you sure you dont somehow want to be homeless?......... you can still walk ...... ...........but you dont look like you're in pain.......... ...........when your hungry enough you will...... you have too many medical conditions.... you're to smart to be disabled! .......but, cant you just .... well, your not in a wheelchair.... it doesn't seem like anything is wrong with you ..... what IS wrong with you? darlene matthews |
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Posted: Monday, Apr 20, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Thank you for posting this article. I have disabilities that are sometimes invisible, depending on the symptoms I am experiencing. I have heard all of these lines countless times, and sometimes they make me want to scream. These lines deny who I am as a disabled woman, and that denial is like a slap in the face. I simply want acceptance. I do not want pity or some other thing that someone thinks will make me feel good. I am happy with who I am, and, if they can't accept that, they are not worth my time and attention. Tania Morse |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Thank you. My primary HMO said so many of those things.What hurt me the most was a friend of over 40 years giving me cruel unsolicted advice boiled down to pull yourself together. She works as a shrink.Ha. A stone has more compassion. There was so much fury in her e-mail that I deleted it asap. I cried that night.I felt like a fool when told not to cry if I called her.I deleted her too. Ingrid Sacknowitz |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I loved this article. I am a Leader Against Pain trained by the National Fibromyalgia Association and PANDORA,a S. FL advocacy group. I had to think of a sound bite during my training, and it was easy: "My goal is to make an invisible illness visible." I've used it at several city council meetings in S. FL and at state pain conferences that I attended as a patient advocate. May I have permission to use parts of this article in our PANDORA newsletter? I write a humor column and will take a break from "Living With Fibro and Trying to Laugh" with a more serious column about this article. Kudos to those who write and edit this wonderfully informative e-mail newsletter! Yvette Taylor |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability My father, mother and husband all at various times have had illnesses that were long drawn out affairs during which I have heard most of those comments in various forms. I myself have used them before I was aware of the implications. When I hear people say some of those things, I think that they want to connect but don't know how and haven't been through the difficult situation an illness leads one into and lack the vocabulary. Thank you for helping bring the message to more people. It might be helpful for people to suggest alternative "things to say" What would people like to hear? I think I would like to hear "It's wonderful to see you again, I've missed you." Heidi Nelson |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability thank you for writing this ! I have encountered these and have also said some to myself. I am printing it out to help others around me and myself to better understand. joan campbell |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I have Ehlers Danlos and sarcoidosis. I have lost my teaching career, can no longer walk, swim, coach, have endured 17 surgeries with more in the horizon, yet constantly hear about how "good" I look. To this day, I really don't know how to reply. I want them to instead try to hae them understand how brave I am trying to be, how much I have to put up with, but dot ant to upset these people with good intent. I should be happy I look okay, But that constant comment goes up my spine instead! ellen smith |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability The cliche until you have walked in my shoes ..etc-is so true.No one knows the pain levels I have,or the emotinal turmoil caused from my spinal OA,Post traumatric stress syndrome,depression,lmitis on doing ADL's,the waiting for lab results,and the snotty attitudes of the people who are supposed to be serving me.I have paid my dues.I'm a RN whho was in the Army during Vietnam.I don't want special or preferential care,but I do demand common sense and manners. Elaine Cortese |
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Posted: Thursday, Apr 16, 2009 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability The cliche until you have walked in my shoes ..etc-is so true.No one knows the pain levels I have,or the emotinal turmoil caused from my spinal OA,Post traumatric stress syndrome,depression,lmitis on doing ADL's,the waiting for lab results,and the snotty attitudes of the people who are supposed to be serving me.I have paid my dues.I'm a RN whho was in the Army during Vietnam.I don't want special or preferential care,but I do demand common sense and manners. Elaine Cortese |
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Posted: Monday, Oct 20, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Thank you for this article. I am noting it and adding it to my repertoire for use in helping my friends and family understand my issues. One thing you miss though is how those of us with one or more of these conditions tell ourselves these same damaging things. I know my own scripts starts out "but it's just pain, it's not like you're actually damaged somewhere". It's hard enough to change these scripts within yourself without having others appearing to validate them, adding to the self-loathing. L W |
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Posted: Monday, Oct 06, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability It should be profoundly disturbing in a fundamental way that most people feel perfectly comfortable making a medical diagnosis based on the idea that someone must be well if they look healthy. Not all phyicians know all the facts about all illness (that is why there are different types). People with no medical education should be able to admit they are a step below that unless they need psychotherapy. It can take dozens of trips to different kinds of doctors to find the truth about anything more complicated than the flu. No doctor could reveal the truth about something like fibromyalgia triggered by workplace chemical exposure if the employer has no toxic exposure notification process. How could a doctor know the truth if the employer keeps secrets like that? Does profound ignorance mean it doesn't exist? Greg Wilson |
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Posted: Friday, Oct 03, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability My husband has a spinal cord injury, but outwardly appears mobile and "okay" ... no one can see the chronic pain, the muscle weakness, etc. I can't tell you how much it hurts him when people (quite often my coworkers who see him infrequently) say, "But you look good!" Victoria Victoria |
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Posted: Friday, Oct 03, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Thank you for writing this article, so that it may serve as a learning tool for those that make assumptions or think they are being 'kind' to the person with disabilities. As a person with multiple chronic disabilities that are not visible, it is inevitable that I get "judged" negatively because others cannot see my disabilities and make assumptions about my appearance that are false. This also makes it a very subtle form of discrimination, both in and out of the workplace. I only ask that you be open-minded based upon first-time visual cues. Just because you can't see it doesn't make it non-existent or true. Ron Fleener |
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Posted: Friday, Oct 03, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Not what you mentioned but Deaf is another non-visble disability as well! Steve Sandy |
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Posted: Friday, Oct 03, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I have fibromyalgia and if I had a dollar for everytime someone told me especially my mother that nothing was wrong with me I could help balance the budget bonita billups |
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Posted: Friday, Oct 03, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability I am often amused to be the "healthy looking one" in many circles, dishing out health and fitness advice, despite 25 brain surgeries to treat hydrocephalus in the last 28 years, plus 26 years of living with HIV. Still, comments like "but you look fabulous" do grate on my nerves. While grappling with the effects of multiple neurosurgeries as a teen, I lamented the frequent shaving of my head and wanted desperately to be "normal" and play contact sports, even if I didn't really care about them. At 43, I'm happy to keep a very short haircut and show of my topside scars with pride, and I love showing off 1000-pound-plus leg presses, even if there's no compelling purpose for the strength. David Phillips |
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Posted: Wednesday, Aug 27, 2008 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability Thank you for this article. It has everyone of the things that are said to me in it and it feels good to know that somewhere out there are people who have an open mind and are willing to help those of us whose voice is never taken seriously. I Erickson |