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The Stigma of Not Working

by Nancy Foley.

A man is a worker. If he is not that he is nothing.
-- Joseph Conrad

Not everyone can work.

This will be true no matter how hard we push employers to make "accommodations." It will be true no matter what types of adaptive equipment we invent.

After trying so hard and losing so much, it is frustrating to encounter people who suspect that we really could work full time.

In the fall newsletter of the American Association of People with Disabilities, President and CEO Andrew J. Imparato endorsed "a sustained social marketing campaign aimed at increasing society's expectations about the capacity of people with significant disabilities to work and otherwise participate in the mainstream." He also wrote, "If we can build stronger expectations that disability need not equate to retirement and a lifetime of subsistence-level benefits, we can improve the motivation of more working-age people with significant disabilities to participate in the workforce. At the same time, we can have an impact on the key 'influencers' in the lives of adults with disabilities so they are not allowing themselves to reinforce low expectations that many disabled people may have about their employment possibilities." The newsletter reports that the idea for this campaign came from Mark Bagshaw, a manager in IBM's global Accessibility Center.

I run an advocacy organization for injured workers, and I joined AAPD to learn from the broader disability community. Before I criticize this point of view, I must try to understand it. Some people with disabilities (particularly those with visible disabilities) have been denied employment opportunities because society underestimates their abilities. They are angry when others try to help them with tasks they can do themselves. They want the world to know how capable they are.

Many of us fall into another category. We suffer from invisible injuries, such as chronic pain, or have poorly understood diagnoses, like chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivity. Nondisabled people do not believe us when we say we cannot work. They think we are lazy. The last thing we need is a marketing campaign that stigmatizes us further.

I have been interviewing injured workers for a book about the Massachusetts workers compensation system. Our stories are so similar. We are people who loved our jobs and tried hard to hold onto them. Losing our careers was among the greatest disappointments of our lives.

I continued to work in pain for years as a newspaper reporter and copy editor until I could not make it through the day. After going out of work, I still thought I would recover and return. When that did not happen, I spent thousands of dollars to retrain to be a schoolteacher. A car accident left me in more pain, however, and when the time came to student teach, I lasted only three weeks. The college had been very accommodating, allowing me to student-teach half-days, but I still could not do it.

After trying so hard and losing so much, it is frustrating to encounter people who suspect that we really could work full time. Some people mean well. I have had friends suggest I become a lawyer or run for elected office. They intend a compliment, not understanding the difference between mental and physical ability.

When I try to explain, they look confused and mutter about "accommodations." The push for reasonable accommodations has left the impression that every barrier to full-time employment can be removed. Furthermore, we live in a society that makes it difficult to say, "I can't." We have been taught that we can do anything if we try hard enough.

Do we really need a campaign to encourage family members to push people with disabilities to work? Imagine how awful that is for the individual who cannot meet these expectations. I know one woman whose husband reminds her frequently that when they married he had expected both of them to work. Insensitive comments from family, friends and strangers hurt. When these attitudes are shared by judges who decide workers compensation or Social Security disability cases, our survival is at stake. As we lose our homes, deplete our savings, file bankruptcy and consider suicide, the slogan, "People with disabilities have lots of abilities," has little meaning. We need help.

There are valid reasons why some people are likely never to be part of the economic mainstream. These include chronic pain conditions so severe that completing daily household tasks is difficult. Some injured workers do not come to our monthly meetings because driving and sitting for two hours would be too painful.

Yet, during the years that I have been advocating for injured workers, I have learned that many people do not understand how anyone can be incapable of working. When we were interviewing to hire another advocate for injured workers, one candidate said that he would challenge anyone who claimed to be unable to work. "It's probably psychological. They are too depressed to get out of bed," he said.

A guest speaker at one of our meetings, a lawyer offering financial advice on how to avoid losing our houses, said, "Some of you might have to make some tough choices. You might have to go back to work."

A vocational rehabilitation counselor told us that the alternative to retraining is "sitting on the couch," and another reminded us that the first question people often ask each other is, "What do you do?" Imagine how embarrassed you will feel if you have no answer, he said.

Most nondisabled people equate what they do with who they are. They are proud of their professional accomplishments. Many injured workers do feel a loss of identity initially. With time, we realize that we still have value apart from our professions. Having to figure out how to survive is a far greater achievement than any professional accomplishment.

Chronic illness can also give us a new perspective. Before my chronic health problems, I was focused on status and material success. I am closer now to friends than I was when I was able-bodied.

Many injured workers interpret their disability as having a reason and a purpose. One woman told me that being out of work allowed her to help her mother who was dying of cancer. Another said it allowed her to care for her sick husband.

Clearly, we can "contribute" in ways other than work. People with disabilities share something in common with homemakers. A homemaker may feel that she is making an important contribution and living a full life, while others regard her as the lowest of the low because she is not part of the paid labor force.

The last thing we need is a marketing campaign that stigmatizes us further. Let's be honest: employment is not the only means of improving the economic status of people with disabilities.

Often, this push to employment is presented as compassion, a desire to save us from poverty. Living on "subsistence-level benefits" is not great, but it is better than the year I spent with no income.

Furthermore, living on disability benefits (plus income from part-time work) allows me to live without excruciating pain. I am never without some pain, but I can adjust my life to my body's limits. My fight to get disability benefits was largely a fight for the right not to be in terrible pain. Although I am living on much less money than when I worked full-time, I am also living with much less pain.

We make a choice as a society to give people with disabilities only subsistence-level benefits. We could give them more money. I know this would raise concern of providing an incentive not to work, but let's be honest when we discuss the issue. Employment is not the only means of improving the economic status of people with disabilities.

Of course, I favor any attempt to break down barriers to employment. We also need to make the public understand that there are indeed circumstances where not working is appropriate and justified.

Nancy Foley lives in West Springfield, Massachusetts, and is the director of the Alliance for Injured Workers, a project of the Western Massachusetts Coalition for Occupational Safety and Health. Her email is nancywrote@aol.com.


Thank you for writing this.

I have a combination of impairments that means that pretty much anything that is considered "productive employment" is beyond me.

I've seen a lot of people worried that acknowledging this would somehow render their own attempts to prove they are employable, somehow not as valid. I don't know a good answer to that, I just know that insisting that everyone could work if they really tried, is definitely not the answer.

I do think that as long as "competitive employment" stays exactly that, disabled people in general are going to be stuck in a really bad position.

I second the thanks.

Between physical stuff and neurological issues (yes I know neurology is physical but people see it differently) there's no way I can do anything that it's "safe" for me to do. I was a good gymnastics coach. Too bad that doesn't get along with immunosuppressants. Secretarial work? Ha. Neurology strikes again!

I'm currently fighting the SSI fight. But, you know, to many people it isn't a disability if they can't see it...

Dear Ms. Foley:

I am very happy to read your article.
There are many federal, state, local and private compainies that employee people.
When there is a catastrophic injury the agencies that people work for fight for them to return to work where there is workers compensation benefits being paid or other means of insurance being paid.
In this types of cases people are being harassed into returning to their duties.
In the federal government for example, you can have an army of specialist state a person is totally disabled and yet, they will find one insurance company doctor they says you can go back to work. Even if your totally disabled, you may very well be ordered back to work, despite the pain and suffering you have.
There are many horror stories as you know pertaining to this very subject.
This is yet another area that has to be addressed. People who are disabled and there is medical opinions stating their injuries should not have to endure facing going back to work or face being fired.
Yet, I know of several police officers that were in fact fired from their jobs after sustaining line of duty injuries. One such officer is from Massachusetts.
Cops, firemen and emt's are first line responders to emergency and dangerous situations, yet, we face enduring harassment from our departments when we are injured in the line of duty.
In my case, I have a motorized wheelchair that was issued to me after I was assaulted in the line of duty. Yet, the government refuses to provide a means of taking the wheelchair out of my home. They refused to provide a handicapped equipped van.
I am glad to see you address this issue.

Nicely writen story. There are also hidden disabilities. Mine can be seen in bith blood tests, and the MRI of my neck. What amazes me is those who are in denial that pain is real. they think it is something one conjures, and it is based on will power.

I tried to work for years, and couldn't. My sister recommended I "get a dog" to allay my "fears." The dog resulted in a HUGE improvement, and my boss even let me bring the dog to work. But I couldn't do anything right. I changed "careers" several times, trying to find something I could do, and things only got worse. everyone thought I was lazy and crazy.

Then I was corectly diagnosed. I started to understand what was causeing some of my symptoms. More correct diagnosis were made. I have multiple "hidden" physical disabilities. But I "look" "normal."

I was approved for SSI 3 months after I applied, right here in Mass! Why? How? One thing I had accomplished in 18 years of undiagnosed disability, was to prove all the things my disability prevented me from doing corectly!

When I read the ADA definition of "qualified disability" I say LOL, that's it..."Unable to work." For me, geting the diagnosis was like getting the diog on a leash, a big relief. It explains why there are some things I just cannot do. Not for lack of trying. Not for lack of wishing. Not for lack of accomodations. Now, if the MBTA would just allow me to bring my service dog on board without screaming at me and calling the cops, thinks would be just fine.

Again, nice article, well expressed point of view. Thanks, Kathy

Very interesting article. As a worker who went to college for a career, and then found herself being denied jobs in the field that I trained for, mainly because of my disabilities, I have grieved the loss of a potential career. I went back to school to take classes in Accounting to become an accouting clerk, again that plan failed because I had no experience. In the end, I ended up broke and filing for disability, because I couldn't keep up with the demands of the job that I had eventually got. That was in 1997, now in 2006, how am I supposed to compete in a lousy economy for jobs that went to China, India, and Taiwan, against the a-b's. Plus, how am I supposed to compete for jobs against illegal immigrants who are not only able-bodied, but will work for pittance.

What we have here, in my opinion, is, that the working world (the real world) have reason to believe that any disab ilites not shown on the outside of a disabled person is not really a disability at all. Why? Because, society teaches that what you don't see with your eyes, 9 times out of ten, don't believe. And they will not believe until we as a collective group do something about it.

That the working world is defined as the "real world" is actually one of the major problems here.

As an unemployed person, and one who is likely to remain this way indefinitely, I am often considered not really part of society, or not really giving anything to society, or not part of the "real world". Just... a drain on society. Basically. And outside of "real" society.

As someone coming at this from the other side of the equation, it's good to get this perspective.
I'm a college graduate with a minor but really visible physical disablities, and I have a consistent difficulites landing even an entry level job. I've had a number of occasions where enthusiastic phone interviews and applications lead to mysteriously vaporising job offers the moment they saw me and my crutches in person. I don't need expensive accomodations, and for most jobs I apply for, I wouldn't need any. However employers simply assume that I would be too difficult and expensive to employ.
My first reaction to the AAPD annoucement was unbridled enthusiasm, naturally enough. The main barrier to employment for me is people's belief that I can't work. But after reading your article I saw the other side of the coin. It opened my eyes to the difficulites of a blanket approach. Assuming all people with disablities should be able to work is as dangerous as assuming that all people with disablites can't. Hopefully we can come up with a system that is benificial for all.

Yes, Kassiane, exactly.

In my case, the kind of work I used to be best at (which was repetitive and usually physically intense) is now off-limits to me because my body won't do it anymore.

So people then assume that I'd be great at the kind of intellectual work that has always taxed my brain so much that it shuts down.

Then people always say, "Be a writer," and I always say, "I can't write to anything resembling a deadline and I can't work on command, even if I really really want to." This is not to mention the fact that I've got really painful tendonitis from writing as my primary mode of communication. It is assumed that the "can't write to a deadline," "can't write on demand" stuff is a matter of discipline, no, it's because of the way my particular autistic brain handles information, I can't squeeze information out without forcing a shutdown.

Not to mention throwing a literally neverending migraine into the mix, which means all bets are off for how much I'll be able to do anything but lie in bed at any given point in the day (migraines aren't just headaches, they're a whole experience, including a lot of neurological stuff like trouble thinking clearly).

And if I do too much taxing stuff, either intellectually or physically taxing (and "intellectually taxing" includes "perceiving my environment in a typical way for any length of time"), then my body will just freeze and I won't really be able to do any work of any kind, unless "giant paperweight" is a job description somewhere. And even then, I don't think I could really serve as someone's "giant paperweight" for very long without experiencing some really nasty stuff from the consequences of perceiving that environment for too long.

I've had people tell me that my problem is a lack of confidence. No, not really. My tendency is more to overconfidence in these areas, and then I pay for that.

My body, including my brain, just doesn't function in a way that the American job market considers useful. Fortunately, the American job market doesn't determine the absolute definition of "useful", but a lot of people treat it like it does.

interesting. Tony Blair and Co. put a prettier face on the same dynamics.

if having a job, let alone thirty or forty hours a week of a job is what work means, i can't work. i probably never will. that alone makes me an oddity. the last thing i'd want on top is any campaign to push the idea that i'm just lazy. or, as may yet come, to be required to demolish what health i have in proving the point.

but i do want everyone to know that a lot of disabled people can do more than anyone thinks they can. just as personally as i want them to know a lot of disabled people can do less than anyone thinks they should. because years and years of negative expectations were what most unfitted me for a lot of life. more even than what gave rise to them.

and of course, disabled people can be lazy bastards too. there's an equality slogan which won't catch on.

the question is, can the world accept those clashing realities? most people have trouble grasping complexity: a lot will never grasp both ideas at once, certainly not within the next generation or so. just people we are, but stick 'disabled' in front, in any way define us as a single group, and of course the world wants to know how to categorise us. humans categorise.

and maybe that leaves us with a choice: which stereotype would we rather see alive in the world around us? it's either that, or find a way of making the single category several, which works both for us and for others.

One thing (non disabled)people misunderstand. They take accomamidations such as provided a chair for a Professor to sit as an accomidation. Or a desk designed for someone in a wheelchair. They ignore, for example, someone who has created a home environment that is stable for them (say multiple chemical syndrome or chronic fatigue syndrome, or various illnesses and injuries that cause pain). There are few options for these individuals who could work at home, with flexible hours, and sick time as needed. Until we understand that making accomodations such as working with these individuals (who may work less than ten hours a week, and working outside the home is not realistic) to find some employment for these disabled. Certainly there are those who working will never be a part of their lives, but we need to get companies, government to extend assistance further. And to allow that there will be extended times when a person can and can not work.

"a sustained social marketing campaign aimed at increasing society's expectations about the capacity of people with significant disabilities to work and otherwise participate in the mainstream."

Amazing. With advice like this, who needs enemies. I'm simply amazed that someone, especially this person, would put out a recommendation like this that is potentially injurious to so many people who rely on disability benefits.

This explains a bit:


This article was right on as were some of the comments. My sister has severe arthritis and fibromyalgia and was terminated from Adelphia because she was on disability and the company refused to accommodate her. At her age it is difficult to find employment.

Recently she had a conversation with one of her friends who still works there and her friend accused her of being unwilling to help herself because she didn't stay at the company and because she cannot take jobs that require physical stamina.

I also have pain issues from spinal stenosis as well as hearing impairment. I am fortunate in that my job is interesting and intellectually stimulating but not being able to hear has prevented me from moving up further--not because the company I work for isn't willing to accommodate me but because of the nature of the work itself, which really does require a good set of ears.

I deal with my issues by working from home and it is a good accommodation except that I have no benefits and have to pay double taxes. I don't feel that it is fair that only blind people get the double tax exemption. All people with significant disabilities should get it.

It's important to recognize that there are all types of situations and that some of us can work a lot more than we are given credit for with accommodations but some of us cannot work and still deserve to be valued and allowed to live decent lives.

It is hard not to see this as part of the continuing campaign to cut down on social benefites. Instead of saving money by not going to war, the government tries to reduce services to its citizens. What is most troubling is where this is coming from. Justin Dart was one of the founders of AAPD, but is it now just the mouth-piece for anti-disability support sentiment? Who can you listen to anymore? NCD, NOD, DREDF, AAPD, all seem to have an agenda which ignores the disability experience, and ignores that experience within a competitive employment arena. That arena is not the only one possible, but it seems to be the only one we pay attention to. The idea that work-ethic is the key is not a new idea. When I look at the science behind that point of view I find a biased agenda is being pushed by deceptive means. One research report I read found that the main difference between states where people with severe impairments got jobs and states where they did not was the work ethic/attitude in that state among the VR counselors, and the employers, and the citizens in general. In the states where employment rates were higher for people with disabilities, the sense was "Of course they can work," and "Of course we can find a job for them." What that research report left out, even though the information had been gathered, was the low-level, dead-end nature of those jobs, and the nature of those states - cold, sparsly populated places where no-one, not even immigrants want to live, and the rates of unemployment for people with disabilities who were also members of minority groups, such as native American Indians. Of course, to get a first job, any job at all, is vital, but the right work ethic can only go so far. What I do find worth exploring is the different perspectives of people with different types or levels of impairments. We do not understand each other, but it is good to listen.

Thank you oh so much for writing this article!
The pain of "IDJ" (Invisible Disability Judgment)
often stifles any sense of "worth". I don't
know which is worse: People who think you're
"lazy" and "victim-brained" and won't say it to
your face, or those who think it and never have
the courage to discuss it; thus you never
get to really "address" it. Also, many of us
can, and do contribute in so many other ways.
But until the "value" of those things we *can* do,
and contribute, are acknowledged, either
monetarily or some other way like bartering,
then a very "narrow" definition of "work" will
be the "corporate sterilized version" offered
to us. I can't really speak for anyone else but
I sure do feel Ms. Foley did, in fact, "speak
for me".

I will keep it simple if we just had "National Health" the business sector would not be so worried about hiring the disabled because workmen's comp could be replaced. Workmen's comp I feel is a factor that just keeps on promoting the discrimination in the U.S.! The main reason business lkes it if the employee accepts it he or she can't sue! Workmen's comp I beleive was brought in under Hoover!

Our capitalistic society/economy is largely to blame for feeding us the idea that what one does for money defines who we are. It also, by corollary, says that only a very narrow set of activities are of value -- i.e., those that get you money from a job. The wide, wide range of the rest of human activity (nearly infinite, if you think about it) thus has no worth. How messed up is that?

Thank you for saying so clearly what I have not found words to say for myself. As someone who lives with pain and fatigue from years of living with effects of JRA and scoliosis, I never figured out how to do the gainful employment thing---not from lack of trying, wanting to, etc etc. I just can't do it. I do lots of things, but the majority of my ability is used up in day-to-day coping and survival. Well stated.

I'd like to respond to Janaki's comment on a national health system. This is a key issue for people with disabilities because there are a lot of different kinds of programs happening that are really not beneficial to people with disabilities. For example, the Medicare Part D is horrible because of the big gap in coverage where most of us who are on a lot of medications need coverage. The plan in Massachussetts will make a very bad impact on disabled people who work because most of us do have the low-end jobs described by John but make enough to be above that ridiculous poverty line. Those people would be forced to buy stripped down plans that cover practically nothing until a person is flat broke and they take away money that we have to spend out of pocket already. An expanded Medicare for all program such as H.R. 676 proposed by John Conyers, Jr., (D-Mich) in the House of Representatives would cover everything for everybody without raising costs because all of the administrative work would be handled by a single-payor. This would eliminate the parasitical insurance companies that take all our money and cover less and less.

A lot of companies don't want to hire disabled people because they fear that their medical premiums will rise. A single-payor system would eliminate this.

In addition, there would be the sensible price controls on pharmaceutical companies. Currently these companies claim the the money is for research and development but the money we pay for our medicines is really used to pay the companies' CEOs outrageous salaries and also to market the drugs.

I am working with a group called Healthcare-NOW! on this (www.healthcare-now.org) and we would very much like to work with more people with disabilities to ensure that we are all well-represented as our country tries to resolve the healthcare crisis.

A single-payor system would also help people with severe disabilities to not be forced to work when it is extremely difficult to do that.

I apologize for not reading this article all the way through in advance. I don't have time. What happens to the people hidden in the cracks that the government cannot see or will not accept? The people who have looked at the crappy choices that are in front of them and make the most of them? The single women who have children and families who actually depend on them and their "availability". What happens to the people who are not NORMAL? They become "reformed" that's what happens.
Everywhere is stigma and ignorance from your man on the street to your Bertha Betterthanyou through even your supposedly knowledgable Doctor who comments on how all that fat you gained will never come off now that you are over such and such age. Because, of course, taking a pill to keep you closer to sane whether it be for pain or mania, is unimaginable. Nothing changes, except the foci. No one cares accept the people who pay or pay attention.

I have a psychiatric disability. I'm not just pretending to be crazy. I really am. Right now I'm experiencing the longest remission of my life. I'm working part-time. I could work full time. But what happens when the remission ends? I've alread worked full time and used up my trial work months. Then I got sick again. What happens to me if I try to work full-time again and the remission ends? When I'm sick I'm doing good to shower regularly. The system is totally unresponsive to people with disabilities that come and go, especially if they are invisible.

Thank you so much for this well written article! I've been saying same for years and will be so happy to be able to forward it to many friends and relatives so they can see I'm not the only person who's saying these things!

My husband and I both have MCS, CFS/ME and FM --I've had it for over 25 yrs and raised 4 kids while ill. (Yes I am ILL, not just disabled which seems to imply if you just had the right device you could live a normal life) My daughter has been affected very much by adults who have told her that her parents are just lazy, or neglecting her because we can't do certain things with her. They've tried to teach her to forget about compassion and to feel sorry for herself. They judge her by what she doesn't have materially (isn't that the real reason many people are working 60 hrs a week now? To buy their kids all the latest and greatest toys etc?) That is NOT the kind of influence I have wished for my daughter! I want her to be compassionate about others and realize just how much she DOES have, to have her priorities right and value most what is most valueable in life.

I wish these people would understand that the burden (stress) they lay on those of us who are ill/disabled only makes our health that much worse. Stress does not cause these illnesses but it sure does not make them better. Most of the people I know with these illnesses end up spending so much of what little energy they have dealing with the stress others cause them and jumping through hoops to constantly prove they are disabled so someone doesn't take away the little security they have. As someone aptly said to me recently "getting and keeping disability benefits is a full time job in itself!"

Now if we could just make it required reading for everyone!

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