Disability rights & wrongs

By Beth Haller

Horizon magazine, November 1999

Anna Slackway Lohr of Philadelphia has cerebral palsy and would like to work. But first she needs to find the right employer, someone open to innovation and able to “think outside of the box.”Anna is neither heroic nor tragic. She is a wife, sister, daughter, and friend, and she would like to be an employee, also. Anna’s cerebral palsy causes multiple disabling conditions for her. But she lives with her disabilities with a matter-of-factness, not with some kind of noble suffering.

Typically, when most people think about being disabled, they bristle at the “tragedy” of living forever with a disability. Or, they’re “inspired” by Supercrips – people who scale mountains even though they are blind or race wheelchairs in marathons.

Completely stigmatizing, both images seriously undermine efforts to build an inclusive society in which all people – the 54 million Americans with disabilities as well as the 200 million without – can thrive, set goals, and succeed. For many years, I have researched media images of people with disabilities and their issues, and found that these stereotypes – filled with messages about tragedy, pity and inspiration – are pervasive and detrimental to government policies and other vehicles aimed at expanding disability rights. The U.S. Commission on Civil Rights confirmed my research recently when it reported that poor news coverage of disability issues leads to “gross misunderstanding” among the general public and even to “increased hostility to individuals with disabilities.”

Many of the images are tied to able-bodied people’s fears of becoming disabled themselves. “This fear is based upon the incorrect belief that a disabled person’s life is inferior to, and less precious than, an able-bodied person’s life,” wrote Paul Miller recently, in Issues in Law & Medicine. The disability community is one social group that any of us might enter at some time. Disability activists call it the “fate-worse-than-death” scenario and say it provokes outright pity for people with disabilities. Frank Bowe, who wrote one of the major assessments of disability in U.S. society in his book, Handicapping America, says that the distortion of attitudes about people with disabilities can destroy their relationships with others. “One central, tragically wrong, assumption seems to pervade most of these attitudes: that disabled people are different from us more than they are like us, that their disabilities somehow set them apart from the rest of us,” he says.

Attitudes that cast disabled people as “them,” rather than “us,” have long affected the economic status of people with disabilities in this country, keeping many in poverty. Because society stigmatizes people with disabilities as “invalid,” many receive no support for living independently, finding appropriate employment, or receiving proper health care or equipment. Because society has yet to bring down the barriers to a physically inclusive society – the stairs, the curbs and the narrow doorways – many disabled people have limited access to interpersonal relationships as well. So, decisionmakers create policies for people with disabilities without even really knowing them or understanding their priorities.

Many decisions about “helping” people with disabilities also stem from false assumptions – leading to a patronizing welfare model. About one-third (34 percent) of adults with disabilities live on family incomes at or below the federal poverty level, compared with about 12 percent of non-disabled Americans, according to the National Organization on Disability (NOD).

Because the news media usually focuses on super-achievers, such as the blind mountain climber celebrated in a 1998 Today Show segment, or the one-armed guitarist profiled the same year in a Los Angeles Times story, nobody knows about all the “regular” people who have a disability. Most people with disabilities are simply everyday citizens, seeking equal access to opportunities in the United States.

As ADAPT (Americans Disabled for Attendant Programs Today) activist Mike Augberger told other activists on the steps of the U.S. Capitol, when lobbying for the 1990 Americans with Disabilities Act: “The preamble of the Constitution does not say, ‘We the able-bodied people,’ it says, ‘We the people.’ We are the people. . . . We are here to demand our civil rights – now.”

Basic civil rights are the main issue. Those familiar with the Americans with Disabilities Act believe it took care of the “problem.” The ADA is an excellent law, written by people with disabilities, rather than for them. The employment section, enforced by the U.S. Equal Employment Opportunity Commission (EEOC), prohibits employers with 15 or more employees from discriminating against qualified people who have disabilities. Employers must reasonably accommodate the disability of a qualified applicant or employee, unless it would cause an undue hardship to the business.

ADA-compliant businesses can take advantage of two tax incentives to help cover the costs of making access improvements: A tax credit can be obtained for architectural adaptations, equipment purchases, and services such as sign-language interpreters; and tax deduction can be taken for architectural or transportation adaptations.

However, enforcing the ADA has not been a smooth process. After the ADA was passed, the EEOC saw a 38 percent increase in the number of discrimination charges filed. But according to an evaluation of the ADA in 1998 by the U.S. Commission on Civil Rights, the agency did not receive additional staff, resources or funding to investigate the surge in discrimination charges. To solve the problem, the officials tried to prioritize charges to investigate, but this led to many incomplete investigations.

An even more serious finding by the commission is that employers and the general public misunderstand and are even hostile toward the costs of implementing the ADA. That’s because Americans typically focus on the short-term problem, rather than the long-term benefits. And, their concerns about the short-term costs of accommodating a person with a disability in the workplace are misplaced: Labor studies show that only 22 percent of people with disabilities need workplace accommodations; one shows that half of all accommodations cost $50 or less.

But even staunch supporters of the ADA concede that the law – no matter how well it’s implemented and enforced – can’t assure all people with disabilities a place in the workforce.

Most of society is more inclined to express pity, rather than promote civil rights for people with disabilities. That means many would be more comfortable seeing their tax dollars used to keep people with disabilities at home with a Social Security check –   instead of fulfilling their potential in the workplace. “We live in a society,” said Judy Heumann, an assistant secretary in the Office of Special Education and Rehabilitative Services at the U.S. Department of Education, “where the expectation is, disabled people can’t work.”

President Clinton and Congress are currently working on a bill that would allow people with disabilities to retain federal health-care benefits when they begin working. The Work Incentives Improvement Act passed unanimously in the U.S. Senate in June and soared through the House on a 412 to 9 vote in late October. While serious questions remain over financing issues, supporters say they are confident that lawmakers will reach an agreement on final legislation later this fall.

President Clinton has been actively lobbying for the bill since it was proposed in January, saying: “Millions (of people with disabilities) are forced to make the impossible choice between going to work and keeping their health insurance. Millions more lack the tools and services that could make a difference between dependence and independence.”

Sen. Edward M. Kennedy (D-Mass.), a key sponsor, has argued that the Work Incentives Act would remove the economic disincentives that keep recipients of federal disability payments from entering the workforce. Kennedy sent letters to several major U.S. newspapers this summer, explaining that people with disabilities “pay heavy financial penalties for taking a job, because most jobs do not provide the health insurance coverage they need.”

Although employment rates vary based on the severity of a person’s disability, only 26 percent of people with severe disabilities are employed, and only about half of those with any disability are employed, according to the NOD’s 1998 study. In contrast, 82 percent of all working-age adults (with or without disabilities) are employed.

Some 8 million working-age Americans with disabilities receive federal benefits of $50 billion annually from Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Although most want to be employed, 99.5 percent of those receiving benefits would lose this income if they earned more than $500 a month. The federal government estimates that if just 1 percent of people currently on SSDI went to work and no longer needed government benefits, $3.5 billion would be saved.

President Clinton has also formed a Task Force on Employment of Adults with Disabilities to bring together the government agencies that oversee many disability programs – the Departments of Labor, Education, Health and Human Services, the Social Security Administration, and the President’s Committee for Employment of People with Disabilities. According to Task Force spokesman Bob Brock, some government agencies have not sought to move people with disabilities into the work world because of age-old, embedded stereotypes about people with disabilities, and because of misconceptions about the time, effort and dollars needed to transition them into the workplace.

Susan Daniels, deputy commissioner in Social Security’s Office of Disability and Income Security Programs, proposes a radical way for society to rethink its attitudes toward disability: “Disability is a natural part of the human condition,” she says. “What causes problems is when society thinks certain shapes or abilities are the only way” she said. But, unfortunately, the Social Security system isn’t set up to pay “people who just have normal human variations, rather than fixing the structures of society,” she said, explaining that “there are people whose disability is a transportation problem or a health-care problem.”

The Work Incentives Improvement Act would provide a $1,000 tax credit to help people with severe disabilities cover work-related expenses. “As anyone with a disability can tell you, it takes more than a job to enter the work force,” Clinton explained earlier this year. “Often, it takes successful transportation, specialized technology or personal assistance.”

This growing awareness that society, and not people with disabilities, must be “fixed” is rooted in the ongoing civil rights movement for people with disabilities. The thinking goes this way: It is environmental structures and social attitudes that truly disable people, rather than a person’s specific physical or mental condition.

Numerous barriers arise for people with disabilities who try to enter the workforce – even for celebrities.

Cartoonist John Callahan, who has published numerous books of cartoons, as well as several memoirs, became a quadriplegic after a car accident in his 20s. Using the partial movement left in his hands, he began his own style of irreverent drawings that poke fun at everything from disabled people to the Catholic Church to feminists. Major magazines like Omni and Penthouse began publishing his characteristic cartoons, and thus began his struggle to work professionally and still retain the medical services he needs as a quadriplegic.

In his 1989 autobiography, Don’t Worry, He Won’t Get Far On Foot, Callahan explained that his insurance settlement covered a few years’ worth of expenses. When it was gone, he had to exist on Social Security Disability Insurance (SSDI), which he refers to as welfare. He received $600 monthly in SSDI, but had to return $200 each month as a partial reimbursement for the attendants he needed. His rent was $325, so he was left with $75 for a month’s worth of groceries, electric bills, drawing supplies, etc.

This poverty-level existence spurred Callahan to work hard at his cartooning. After two years of selling his cartoons in a national market, he made $5,000. He said he happily paid bills, stocked up on food, and purchased his first new clothes in long time. But with his new fame and success came a letter from the government, saying he had to turn over the money he had earned or lose his benefits.

He was so confident in his future cartooning success that he wrote back, saying he thought he could earn the money for most of his expenses, including a $5,000 wheelchair, $800 a month for attendants, and numerous medical supplies. But there was one aspect of his SSDI benefits he could not afford to give up: health insurance. “No private insurer I’m aware of will sell a policy to a quadriplegic, and no wonder, I am certain to need hospitalization from time to time,” he wrote.

Callahan said that as he began his cartooning career, he felt that “solvency and self-respect were just around the corner.” However, the government’s benefits system blocked him from moving out of poverty. He realized that the unspoken response by some people might have been to cheat, and ask for payment under the table. As a recovering alcoholic, however, he said he was committed to living his life honestly, so all his earnings were recorded and given to his caseworker. The conundrum made his success bittersweet.

When his work was selected to appear in Penthouse, which only featured one new cartoonist each year, Callahan wrote: “Absurd as it may seem, my success as a cartoonist makes me feel like a renegade, a culprit . . . . Half of me says, ‘Watch out motherfucker! You’re cheating the system. You’re cheating Welfare. You shouldn’t have this money.’ ”

Nothing much has changed for people on SSDI. Most seriously disabled persons still face the same set of unjust options: Work and lose health benefits, or stay on welfare and live in poverty.

I first met Anna Slackway Lohr in 1992, when we both participated in a nine-month, disability-issues workshop sponsored by Temple University in Philadelphia called C2P2 (Competence and Confidence: Partners in Policymaking). We became friends while rooming together during the monthly all-weekend workshops.

“From Anna Lohr I learned graciousness,” I wrote in a paper about the workshop. “I saw someone who coped with the discrimination and oppression of society without becoming bitter. The walls of prejudice must fall so society will better accept people with so much to give.”

Higher poverty rates are obviously tied to substantially lower income levels for most people with disabilities, according to a 1995 report by Katherine Seelman, director of the National Institute on Disability and Rehabilitation Research (NIDRR). The income level of the general population generally exceeds that of people with disabilities by 34 percent. In addition, disabled people who are African American or Hispanic have even lower income levels than Whites with disabilities. Compare the 1988 average household income – $34,017, with the average income level for Whites with disabilities – $18,000, and African Americans with disabilities – $8,000

Anna Slackway Lohr at her home in Philadelphia.

The National Organization on Disability reports that better education is a significant factor in raising the employment and income levels of people with disabilities. For example, as a child, Anna attended Widener Memorial School in Philadelphia, which is an accessible school for students with disabilities. On the surface, it sounds nice that there is a “special” school in Philadelphia serving children with special needs. But it has contributed to a segregated system, in which many children with disabilities may receive a lower-quality, less rigorous education than those in public schools.

A few years ago, I saw the limitations of a special school for people with disabilities when a very intelligent friend, who happened to be a teenager with cerebral palsy at Widener, had to fight to get some basic courses. A trilingual Russian immigrant, he planned to go on to college, but had to attend the “regular” high school next door to Widener to get the science courses he needed to get into college. That was a big clue that some “special” schools don’t expect – and don’t prepare – their kids for higher education.

In Anna’s case, educators in her years of “special” schooling seemed to miss the fact that she has a serious learning disability that might have been corrected had it been caught early enough. Now, at 39, she has worked diligently with a tutor to try to learn to read and write better.

Under-educating and segregating kids with disabilities often produces unemployed adults, existing on what the government gives them from SSDI and SSI because they are unprepared for the job market. Many, as Sen. Kennedy has noted, “have no access to the special job training services they need before they can even seek work.”

Anna receives about $340 monthly from her federal benefits check. She and her husband, Michael, who also has CP and is a wheelchair user, live in a tiny, subsidized apartment in Philadelphia. Although Anna and Michael are in their 30s, most of their neighbors in the complex are seniors. However, the setting provides access to services they need to live independently, such as help with cooking and other housekeeping activities.

Anna and Michael remain active and hopeful about future employment opportunities. Michael has taken classes at Temple University and is well versed in numerous computer applications. On a recent visit to their apartment, I found him spending hours on the speaker phone, trying to work out a computer problem with a technical assistance person on the line.

Both Anna and Michael have severe speech disabilities and use a device called a Liberator, a computer that vocalizes speech from keystrokes. It’s a tool that could help bring many employers into compliance with the Work Incentive Act. However, one of the Lohrs’ two Liberators is often broken, so they must share the communication device that provides them with a voice.

At one time, Anna turned her knowledge of the Liberator into a “job.” For four years, she worked at Widener Memorial School, helping the youngest children get acquainted with the device. But Anna was technically a volunteer and her only “pay” was carfare. Anna says her love of helping others has led her to “work” with children as a volunteer off and on for several years.

But her disabilities require her to carefully consider the kind of work she does. Besides her speech disability, she also lives with chronic muscle spasms and has an unsteady gait. She takes about eight different medications each day for related medical conditions such as seizures and stomach problems.

As a volunteer at Widener, Anna’s immune system couldn’t take the constant exposure to kids with colds, flu, etc. “I love kids, but I didn’t like getting sick. When a kid got sick, I got sick,” she explained.

Anna’s most recent “job” has been assisting other adults with disabilities, something she’d like to do in the future. It’s what she did for two years as an AmeriCorps volunteer at Inglis House, a rehabilitation hospital and residence for people with disabilities in Philadelphia. AmeriCorps provides each of its volunteers with an $8,730 annual living allowance plus health insurance. It also can provide a $4,725 educational award, paid at the end of service.

Now that her AmeriCorps stint is up, Anna longs for work again. This is where the Work Incentives Improvement Act could assist her. If she were employed as an aide or helper at a rehabilitation hospital, she could retain the medical coverage she receives through the federal government to manage her disabilities.

However, due to Anna’s own disabilities, she will need an employer who is flexible. Anna is part of the hidden minority of the disability community that the act is trying to assist – people who live in poverty, want to work but can’t jeopardize their federal benefits, and have serious disabilities that may only allow them to work part time. Many disabled people have not a single disability, but multiple disabling conditions that preclude a traditional 40-hour workweek.

For employers of workers with more severe disabilities, “thinking outside the box” might mean job sharing, permanent part-time employment, nontraditional shifts that would accommodate someone’s peak performance time, specialized job training, or job coaches.

Such flexible structures could give Anna the meaningful work she seeks.

When I ask Anna why she continues seek work when she knows she probably won’t be given more than carfare, she sighs and looks around her tiny kitchen and says, “I have to get out.”

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Beth Haller, a former newspaper journalist, is an assistant professor of journalism at Towson University in Maryland. She researches news-media images of disability
issues.