Your alarm goes off at 5 a.m. – a rude awakening, as usual. You’ve got a three-hour morning routine to contend with, and you’re never sure if your attendant will arrive on time. You’ll have just enough time to grab a bit of breakfast before loading yourself into a van (or public transit, so you’d better be punctual), and your dodgy commute to the office is rarely predictable, so you need some buffer-time to ensure a timely arrival. You roll into work a little before 9 a.m., just to show the boss you’re a conscientious and reliable employee. Your workday has just begun, and you’re nearly exhausted.
Now, really, is this any way to make a living?
The preceding scenario may not apply to all of us, but it’s a realistic one for a lot of people who’ve been disabled by spinal cord injury, multiple sclerosis, cerebral palsy, or any condition that demands a lifetime of extra effort just to be “normal.” If you’re going to enter the workforce at all, you’re virtually guaranteed a daunting array of additional challenges which prompt the very reasonable question, why bother? When quality of life becomes a major concern, it’s tempting to avoid working altogether.
Understandably, a lot of people with disabilities simply choose not to work. Taking all factors into account, including attendant care expenses, eligibility for benefits, family support, etc., sometimes it simply makes more sense to preserve whatever quality of life you’ve managed to maintain, even if it means a lifetime of lower income. The great irony for many disabled people is that employment is a luxury they can’t afford.
Of course, many healthy paraplegics can meld into the workforce with relative ease and, in some cases, considerable success — just look at John Hockenberry — Emmy-winning journalist, author and married father of two sets of twins — for the most conspicuously admirable example. But some with more severe disabilities — and more desperate social and financial circumstances — face daily challenges so intimidating that the mere possibility of maintaining satisfying employment seems elusive or out of reach altogether.
Statistics regarding employment of disabled people reflect this: We’re now facing a downward trend of disabled people in the workforce. The reasons for this are as varied as the reasons for not working, but they ultimately lead to the same general conclusion: For many disabled people, employment is either not a viable option or fraught with so many complications that many choose to avoid it. And yet, if you dig beneath the statistics seeking answers to the question — “do you really want to work?” — you’ll discover that the employment status of disabled people is largely determined by each individual’s personal circumstances, abilities, and desires. Those willing and able to face the challenges may discover that employment is not as elusive or unattainable as they thought. Or, by choosing not to work, they may simply have found the balance of lifestyle that works best for them.
For starters, let’s debunk the statistic we’re all familiar with: 70 percent of disabled people are unemployed. It’s complete hogwash — a false figure based on erroneous assumptions regarding the number of disabled people who are actually engaged in the workforce.
Because the employment rate of disabled people hovered around 30 percent for much of the past 20 years, it was largely assumed (and casually repeated in news and policy reports) that the unemployment rate of disabled people must therefore be 70 percent. This assumption does not account for those who are retired, those who are not looking for work, and those who are unable to work for reasons related to disability, chronic illness, or other conditions that prevent them from working.
If you are a healthy disabled person who is employed or actively seeking employment, you’re a statistically recognized member of the workforce. Whereas “less disabled” people sidelined by disabling conditions like chronic pain who declare themselves “unable to work” are classified as outside the workforce.
These distinctions, along with potentially misleading broad-spectrum definitions of disability and the myriad factors affecting the validity of statistical surveys, all play a role in the Byzantine mass of information from which researchers draw their conclusions. And since those conclusions ultimately determine national policy regarding the employment of disabled people, it’s in everyone’s best interest to ensure that definitions of disability, and their effect on statistical surveys, are constantly improved and made more specific in order to yield more accurate and effectively targeted national policy.
The Numbers Game
According to Stephen H. Kaye, a principal researcher at the Disability Statistics Center at the University of California, San Francisco, the most current figure, from 2005, for disabled people between the ages of 18 and 64 who are employed is 19 percent — down from 25 percent in 1994. The latest figure, also from 2005, of working-age disabled people who voluntarily claim they are unable to work is 54 percent, up from 42 percent in 1994. Taking these figures a step further, 4 percent of disabled people are actively looking for work, 10 percent are retired, and the remaining percentage are not in the labor force for unspecified reasons or simply do not wish to work.
Different researchers draw different and sometimes politically competitive conclusions regarding this downward trend in the employment of disabled people, and Kaye is quick to point out that there are reasons to distrust the narrow definitions of disability based on “inability to work,” because there are many alternative disability-related explanations why people choose to work or not.
Another factor influencing figures related to employment of disabled people is even the most trusted statistical surveys lack the ability to focus on more specific results related to different kinds of disabilities. State-by-state employment figures are particularly limited in their statistical reliability — for instance, there are currently no regional surveys of growth industries that may lead to increased employment of disabled people — and even the most comprehensive studies tend to address disability in broad terms that are skewed by inconsistencies.
“It’s frustrating to deal with inconsistent data that’s limited by factors beyond our control,” says Kaye, “and we still don’t have decent measures of the population of people with disabilities.”
Currently, the surveys most useful to statistical researchers are the Current Population Survey, a nationally representative survey of approximately 50,000 households each month that includes figures on the disabled population, and the American Community Survey, a new, frequently conducted nationwide survey by the U.S. Census Bureau designed to provide communities with fresh information about how they are changing. While these surveys are essential to statistical research, along with other reports like the Census Bureau’s National Health Interview Survey, Kaye and other researchers readily admit that statistics drawn from these surveys can never be 100 percent accurate or reliable.
What most researchers now recognize is that eligibility for benefits like Supplemental Security Income and Social Security Disability Insurance is a primary cause of the downturn in the percentage of disabled people in the workforce. With no financial incentive to join or re-enter the workforce, many disabled people fall into the trap of dependency on poverty-level income. Even though many beneficiaries of SSI and SSDI may actually be able to re-enter the workforce, they’ve chosen not to for a variety of reasons related to quality of life, personal initiative, legitimate reasons related to disability, or any number of individual factors that determine one’s choice to remain dependent on benefits.
This much is certain: Once you’ve stepped into the trap of benefits, it’s difficult and frequently impossible to escape. And while new programs are being proposed and tested to facilitate the entry or return of disabled people into the workforce, the downward trend is likely to continue before improving conditions arise.
To better understand the diversity of factors that go into one’s decision to work or not to work, a few simple case studies may prove enlightening. At the very least, looking at how different people with various disabilities have chosen to live should provide a fascinating peek behind the statistics.
Bob Spencer will never fit anyone’s stereotype of “the helpless cripple.” A C4-5 quad since a Florida diving accident in 1981, the 49-year-old former Ohioan now lives in Fredericksburg, Va., and has been an active member of the workforce for almost 16 years. Not only has Bob avoided dependence on SSI and SSDI, but he’s a contact representative in a branch office of the Social Security Administration, so he’s got a front-row view of a lot of people, disabled or not, who are seeking benefits for conditions that are almost always less disabling than his own.
“Sometimes I really have to bite my tongue when I’m interviewing people,” Spencer says, “and sometimes I just tell them to get off their butts and get a job. I had one lady come in for benefits because she was pregnant and wanted to file for disability. I told her that pregnancy was a choice, not a disability. That kind of thing can be infuriating, but you have to stay objective.”
Despite two dangerous episodes of blood clots in his legs and a recent heart attack, Spencer continues to work full-time. He lives with a roommate but doesn’t require attendant care — a truly astonishing case of hard-earned independence, but Spencer is characteristically modest about his achievements. He’s got nothing but praise for his accommodating colleagues, who regularly help him with routine office chores. Otherwise, this divorced father is on his own, beating the odds and growing closer to his young son, who lives nearby with his mother, with every passing day.
“Being disabled in the work force,” Spencer writes via e-mail, “I know and accept the fact that many people will be watching how I handle myself and [wondering] if things are being handed to me because of my disability. I try to show my co-workers and the public that I’m able to do my job well and have a good life despite the daily obstacles. I’ve always tried to be a positive role model to the disabled by showing them you’re still able to have a good life after a disabling event. I also want to show my son that you need to work hard and, if possible, deal with the curve balls that life throws at you.”
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Given his enviable reasons for choosing not to work, many would consider 47-year-old Greg Jacobs one of the “lucky ones,” with a disability-related legal settlement that afforded him a substantial degree of financial independence. And yet, the C5 incomplete quad has his own set of challenges outside the workforce. A former professional windsurfer and avid skier, Greg was injured while skiing on Crystal Mountain, Wash., in 1981. On a ski run that wasn’t properly signed with hazard warnings, Jacobs suddenly found himself flying into a 12-foot ditch that normally would have been filled with snow, and the combination of speed and momentum caused him to tumble forward, crashing into the ditch with paralyzing force.
During the first three years after his injury, Jacobs briefly attended college before re-entering the workforce in a variety of jobs that proved unsatisfying or impractical in terms of commuting, accommodations, or relevance to his goals. Meanwhile, his legal case with Crystal Mountain gained momentum when he secured the services of the same legal firm that represented the granddaughter of former San Francisco mayor Joseph Alioto when she was paralyzed in a ski-lift accident, also in 1981. Jacobs was eventually awarded $612,000, a full third of which went to his lawyers. With careful planning and wise investments, including a $4,000 purchase of Microsoft stock in 1987 that has since paid off handsomely, Jacobs secured a comfortable future for himself and his family.
Still, there have been struggles. Jacobs’ wife, a rehab physiatrist with a small rural practice, is undergoing treatment for breast cancer, and they share the challenge of raising two young daughters. Jacobs works as an unpaid employee of his wife’s office, providing bookkeeping, computer support, billing, and employee interviews when necessary. Add in his ongoing support for spinal cord injury cure research, and free time is a luxury.
“When people ask me ‘what do you do?’” Jacobs says, “it’s tempting to tell them ‘Well, I take care of an ungrateful quadriplegic for four hours a day’ — namely myself. What they never tell you in rehab is that, on top of looking for work, you’ve got several hours a day just dealing with the reality of being a quad.”
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With a very disabling form of cerebral palsy, Yvonne Singer faces all the challenges shared by many people, and then some. Now 37, she endured verbal and physical abuse during institutional care, and currently lives with her parents in Matawan, N.J. Determined to complete her education and find a job, she graduated from New Jersey’s Monmouth University as a part-time psychology major in 1999, making the dean’s list twice while pursuing her degree.
Singer then earned a master’s degree through online courses from Walden University, an Indiana-based graduate institution that pioneered online education. Singer is now a fully accredited online professor of psychology with Middlesex County College in New Jersey, the result of an exhaustive campaign of hundreds of resumŽ submissions, e-mails, and diligent self-promotion. A prolific amateur writer and passionate crusader for employment of the disabled, Singer also designs and maintains a number of personal Web sites where her writings are archived.
Via e-mail, Singer writes, “It is my intention to promote self-advocacy, positive thinking, and hope. From my perspective, many people with disabilities give up pursuing their goals and dreams due to the ‘no expectation’ attitudes of others. It is very hard to go against the grain, [but] my education and employment gave me self worth and satisfaction.”
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Now in his late 40s, Randy Langton is a T5 para from Oregon who has spent most of the last 20 years as an artist and woodworker, selling his creations with his wife, also an artist, at various arts and crafts festivals throughout the Pacific Northwest. They’ll never get rich, and they experience all the financial ups and downs to be expected from a creative career, but it’s a satisfying lifestyle that suits them well.
The Langtons recently purchased an expensive laser-etching machine that greatly improves the diversity of their creations and the speed at which they’re produced. The cost of the high-tech machine was financially stressful but improved sales of products such as Langton’s decorative boxes, and will eventually pay for their investment.
“I never really considered doing anything else,” says Langton, who thrives beyond the boundaries of the conventional workforce. “We earn too much to qualify for any kind of benefits, but we rarely take any vacations and you can never tell how you’re going to do from month to month. But we’re hoping to take a vacation soon, and we enjoy what we’re doing, so there’s no reason to change it.”
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At 59, Linda Riegel faces the daily challenge of MS, one of the most insidious and unpredictable of disabling conditions. A resident of Enola, Pa., Riegel suspected the onset of MS in 1976, but her condition came and went so subtly that it wasn’t officially diagnosed until 1983. Since then, Riegel’s MS has proven particularly susceptible to stress, growing more severe when her living conditions are more challenging, subsiding when she finds a more suitable balance of rest and activity.
A self-described “upbeat person,” Riegel worked for 11 years as a disability advocate at the Center for Independent Living of Central Pennsylvania, but was eventually forced to stop working by flare-ups of MS, including severe headaches, stomach irritation, and cramping muscles. When she limited or avoided her stressful activities, her condition would stabilize. She had surgery to sever some of the painful nerves in her head, only to discover later that Topamax — a prescription drug for Migraine headaches — was more effective in controlling her pain.
“I wish I were working, and when the MS is stable I feel like I could,” says Riegel, “but when I try to go back to work, everything flares up again. The CIL keeps inviting me to come back any time, but if I do, I’ll end up in the same situation again. It isn’t that I didn’t try, but I just kept going downhill, and one of these times I might not bounce back.”
Ironically, Riegel’s boss at the CIL was a quad who failed to understand the nature of MS, assuming that returning to work would solve her chronic fatigue.
“In some ways I wish I were a quad,” Riegel says, “because at least then I’d have a stable situation. It may be worse in some ways — for instance, I can still get myself out of bed with no problem — but [as a quad] you know what to expect from day to day.”
Still, Riegel’s not complaining. She attends church activities, enjoys the companionship of a new puppy, regularly visits shut-ins in nursing homes, and will soon move into an adapted-garage apartment at her son’s house, to be closer to her grandchildren.
“You’ve got to take life with laughter,” she says, knowing all too well that some things are simply not a laughing matter.
Determination is Key
To the extent that these and other personal histories can be considered representative, they reflect a diverse range of disability lifestyles that aren’t necessarily revealed through surveys and statistics. They also suggest that employment for disabled people is readily attainable for those who can diligently seek it, and that many unemployed disabled people are actually engaged in active, productive lives outside the workforce.
On the other hand, statistics don’t lie, and increasing enrollment in Social Security benefit programs must be considered as a major cause in the downturn in employment for disabled people. It’s equally important to determine when other factors are in play, and many of the current surveys and statistics are ill-equipped to recognize those factors.
As director of the Rehabilitation Research and Training Center on Disability Demographics and Statistics at Cornell University, Andrew Houtenville is well aware that current surveys are ill-equipped to reflect the influence of individual circumstances on statistical outcomes.
“The number one challenge in statistics,” says Houtenville, “is the fact that disability is a complex interaction of personal characteristics and environment, and it’s very difficult to fit those parameters into statistics. People with disabilities are very diverse, and a person’s reaction to disability is very closely connected to the environment in which they live.”
Houtenville and his colleagues — whose study approach is more politically conservative than that of Stephen Kaye and the Disability Statistics Center — believe that the gap between employment of the disabled and the nondisabled population is generally related to the overall health of the economy. In other words, the gap increases when the economy is worse. Factor in poverty with disability, Houtenville says, and it’s difficult or impossible to move forward.
“The decline in employment of people with disabilities has sparked a lot of debate,” Houtenville acknowledges. “My belief is that one of the primary reasons is that ‘sticky programs’ like SSI and SSDI make it harder to return to the workforce. Once you get into those programs, after waiting two years to go through the enrollment process, there’s little incentive to get out.”
Houtenville cites two plans that are being tested to solve this problem. One is the Early Intervention Program, which allows disabled people who’ve lost jobs to get benefits quickly, enabling a smoother transition back into the workforce. Similarly, the Benefit Offset Program would encourage beneficiaries to return to work with a simple formula: For every $2 you earn, you would lose only $1 of benefits, instead of losing all benefits once you’re considered “gainfully employed.”
A proposed Disability Earned Income Tax Credit — modeled after President Clinton’s tax credit for the working poor — has yet to be tested, but would essentially function as a wage subsidy for disabled workers who enter or re-enter the workforce.
Debate will continue as to which programs and policies will improve the employment outlook for disabled people, but this much seems clear: If you really want to work, and if you are able to work despite the additional effort involved, people like Bob Spencer, Yvonne Singer, and Randy Langton are living proof that opportunities exist.
The Internet has been a positive boon to finding employment leads, assistive resources, and materials for self-education toward entering the workforce. As surveys and statistics are continually refined and made more specific to arrive at more accurate conclusions and policy-making, working with a disability remains largely a matter of personal determination.
It still comes down to, do you really want to work?