May 24, 2006

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

Posted on May 24, 2006