Why Can't the Disabled Find Work?
By Jim Knipfel
"I saw this ad that said 'Work for JBL.' Well, I like JBL. I like audio things, so I applied and ten minutes later they called and offered me a job. Basically I'm working at fucking Best Buy as a JBL consultant on this new headphone line. I start tomorrow. They have no idea that I'm visually impaired at all.
Andy Slater is forty years old, lives in Chicago, and for roughly the past decade he's fronted the Velcro Lewis Group, which he's described as a demonical funk rock band. He also has retinitis pigmentosa, a degenerative eye disease that has left him blind. A short theater piece he wrote not long ago, How Many Fingers Am I holding Up?, has recently been turned into a comic book designed to help the sighted better understand his condition and experience.
Most of Slater's income comes from his monthly disability check. The new job promoting JBL headphones was a blessing, not only because he's had such a nightmarish time finding work, but because the JBL job pays $17 an hour for twenty hours a week, so he'll be bringing in just under the $1800 monthly cap allowed by Social Security. That means he'll be able to continue receiving his benefits while working a part-time job. If he earned anything over that $1800, he runs the risk of losing his disability and Medicare coverage. Within the disability community, it's known as the Social Security Cliff.
Slater's situation is a common and familiar one. After losing my job in 2006 and quickly learning what sort of employment prospects were awaiting a middle-aged blind man who'd done one thing for the past 20 years, I was reluctantly forced to both go on disability and turn to the myriad federal, state and local blind assistance agencies to see what sort of job placement help they might be able to offer. Although each agency stated up front that their goal was to help the disabled achieve economic independence and self-sufficiency, here's what they actually offered:
The New York State Commission for the Blind sent me an encouraging pamphlet about finding that first job. At least that's what I was told it was, given I was no longer in a position to read pamphlets.
The American Federation for the Blind offered to show me how to put together a resume, which they would then post on their website. (It's unclear how many potential employers regularly scan the AFB listings when looking to fill a position.)
Helen Keller Services for the Blind offered actual job listings, but only for sighted people who wanted to work at Helen Keller.
The New York branch of The Lighthouse, the nonprofit organization for the blind, offered musical training and had an incredibly expensive gift shop, but I could find no mention of employment services.
Visions held annual seminars and workshops, but those seemed to focus primarily on computer training and the best ways to navigate the State Commission's byzantine bureaucracy.
For all the blather and platitudes about self-sufficiency and gainful employment, nobody really seemed to be doing anything toward that end. Nevertheless, I contacted all of them, but only heard back from New York Industries for the Blind, which seemed to be the only agency in the city with job placement counselors on staff. I explained my situation and background, then forwarded my resume. It all sounded very encouraging.
Over the next three years, I was sent on a total of two job interviews. The first was at a mop factory in a fairly desolate section of eastern Brooklyn. The factory prided itself on hiring the disabled, particularly the blind, a point driven home when I noted all the streets leading to the sprawling factory building were lined with talking stoplights. When I was ushered into the conference room by the young and frighteningly energetic job placement specialist, my impending employment seemed all but a certainty. The interview that followed lasted five minutes. Despite the mop factory's well-publicized reputation, I was informed I was, in fact, too blind to work there. I was also informed (and this was a first) that I was not retarded enough to work there.
The second interview a few months later was for a position at a sweatshop that produced uniforms for the U.S. Postal Service. In a massive windowless basement filled with what sounded to be a thousand pounding and whirring sewing machines, I was placed in front of a silent sewing machine to be interviewed by a middle-aged Asian woman. That interview, likewise, lasted five minutes or less. I was not told I was too blind, or that I wasn't retarded enough. She simply changed the subject after a few preliminary questions, then walked me to the door.
Shortly after the sweatshop interview, I was told by my contacts at NYCIB there was nothing more the agency could do for me, and my file was closed. Later I would learn that my stories, like Slater's, were hardly unique among disabled Americans looking for work.
When first proposed by Senator Tom Harkin (D-IA) in 1988, what was originally titled "An Act to Establish a Clear and Comprehensive Prohibition of Discrimination on the Basis of Disability" was touted as merely an extension of the Civil Rights Act of 1964. It would prohibit discrimination against people on the basis of any of a long list of physical or mental deficiencies. It would also require that public services from government office buildings to transportation be made accessible to paraplegics, the deaf, the blind, and the developmentally disabled. Furthermore, businesses which hired the disabled would be required to provide any tools and make any necessary adjustments to allow disabled employees to do their jobs. The latter might involve accessibility software, wheelchair ramps, or more time to complete a certain task. Initially and on the surface it seemed like a logical, decent, and simply human means of protecting the rights of the disabled, as well as allowing them to live and work as self-sufficiently as possible. In short, it would assure them the same rights and protections afforded any other citizen.
When the Senate debate began in 1988, what had come to be known as the Americans with Disabilities Act (ADA) faced fierce opposition from two primary and powerful lobbies. The first represented small business owners, who feared the implementation of the ADA would saddle them with an immediate and serious added financial burden, given it meant they'd suddenly be forced to remodel their buildings in order to make them wheelchair accessible. Beyond that, the fear was they'd also be required by law to hire a certain number of cripples, each of whom would arrive loaded with a bagful of special needs and requirements, which the employer would be forced to satisfy out of his own pocket.
The other major opposition came from the Church. Perhaps feeling the disabled were clearly being punished by God for some deep, undisclosed sin, Christian groups argued the federal government had no right to compel them to make their houses of worship wheelchair accessible, nor compel them to hire the obviously misbegotten. By the time the ADA was signed into law in 1990 by President George H. W. bush, churches had been added to the list of those businesses (like social clubs) that were exempt from compliance.
Over the next twenty-five years it's undeniable the ADA accomplished a great deal of good on behalf of the disabled community, from textured curb cuts at crosswalks to wheelchair lifts on city buses to the widespread availability of TTY systems for the hearing impaired. At the same time, however, certain other fundamental issues, like healthcare costs, remained all but unaffected. The biggest bugaboo of the ADA remains the economic status of the disabled, for whom the unemployment and poverty statistics continue to climb.
It’s reported that following the 1991 enactment of the ADA, the employment rate among disabled males reached a high of 45 percent in 2005. A decade later, however, those numbers had dropped to 34 percent, compared with an employment rate of 74.6 percent among non-disabled Americans.
But the numbers, disturbing as they are, remain questionable. The Bureau of Labor Statistics, for instance, did not begin keeping specific numbers on disability employment until 2008, the same year an amendment to the ADA broadened the definition of what constitutes a disability. Prior to that, the numbers are mostly apocryphal. The reigning question, and the source of much political debate over the past quarter-century, has centered around whether or not the ADA has in fact had a negative effect on disabled employment despite all its good intentions. Those numbers may be a place to begin looking for answers.
"This whole issue is very complicated," says William Erickson, a statistician and researcher at The K. Lisa Yang and Hock E. Tan Institute on Employment and Disability, a division of Cornell University's School of Industrial and Labor Relations. "First there is no official definition of disability, and as you change the definitions the population identified changes and those changes affect the employment rates as well. The Current Population Survey (CPS) data available on our site uses the very basic 'work limitation' definition of disability: 'Persons who have a "health problem or disability which prevents them from working or which limits the kind or amount of work they can do."' This is not the greatest definition but it is the only one that has been consistently used over a long period of time... There hasn't been a consistent, good, officially recognized disability question that could be coupled with employment until about 2003. But then they also changed how they were defining disability in 2008, and from that point forward it's been much more consistent."
On the whole, he describes the existing numbers situation as "a bit of a mess." Although DisabilityStatistics.org has been tracking the numbers since before the implementation of the ADA, the changing definition has since made it impossible to viably compare numbers from pre- and post-ADA years.
Even now, though the numbers have been consistent since 2008, there are problems.
"One thing to be careful of when you're looking at Bureau of Labor Statistics numbers," Erickson warns, "when they're talking about employment the number you tend to focus on, the employment-population ratio, they present it as 'the population 16 years old and older.' Sixteen is a bit early, but okay. But 'over' means your including all the retirees in the United States. When you're talking about people with a disability, over half the individuals with disabilities are 65 or older, so you wouldn't expect them to work."
Erickson is presently looking into how that fact, coupled with an aging workforce overall, may be having an impact on the unemployment statistics. He does admit, though, that the numbers continue to slide.
Although its origins within Cornell's ILR can be traced back to the 1940s, the Yang-Tan Institute, as it's known today, was founded in the 1960s as a center for tracking and researching public policy concerned with disability employment issues. At that particular point in history, the disability paradigm in the U.S. was changing. Prior to that, most people with disabilities found themselves warehoused in institutions. But after the bad publicity and intense media scrutiny that followed the investigation into the deplorable conditions at a number of state institutions (most notably Staten Island's Willowbrook State School), there was a move on the part of both federal and state agencies to move the disabled back into homes and communities.
"At that time our Institute was very much focused on helping to establish these types of community-based organizations," explains the Institute's associate director Thomas Golden. "At that time they focused pretty heavily on sheltered employment, but through the 70s and 80s that model began to shift as well toward independent living and then toward supported employment. It was much more of a focus on 'Let's not take people with disabilities out of the local labor market, let's not put them in sheltered workshops and train them in the hopes that one day we'll place them in community employment.' The model really shifted to a place and train approach -- that is, put them in a place of employment, provide them the support they need, so that the skills that they're learning are much more transferrable."
Regardless of that shift in focus, the sheltered employment he describes, in which a small but exclusively disabled workforce is paid sub-minimum wages to perform menial tasks, often in an assembly line setting, remains fairly widespread to this day. Section 14-C of the Fair Labor Standards Act allows for the payment of sub-minimum wage under certain circumstances, despite being in direct violation of not only the ADA itself, but the 1999 Olmstead Decision as well.
Interestingly, many of the current sheltered work operations exist thanks to federal contracts. The Brooklyn mop factory provides the mops, sponges, and dustpans for federal office building maintenance crews, and the sweatshop where I interviewed provides uniforms not only for the USPS, but the US military as well. An assembly line at the Illinois branch of The Lighthouse manufactures the wall clocks found in all federal office buildings. The workers are by and large blind or developmentally disabled, and they are paid on average between $5 and $7 an hour. It's become the point of some heated debate within the disabled community, especially after it was revealed other charitable organizations like Goodwill and even some box stores were likewise offering disabled employees similar wages. While certain factions argue it's an antiquated system that promotes segregation and therefore needs to be abolished, another argues that such facilities represent their right to work, and in many cases the sheltered operations are the only places that will hire them. What's more, the sub-minimum wage allows the disabled workers (who could never otherwise afford insurance) to maintain their government benefits.
"When I worked at The Lighthouse," Slater says, "the guys on the clock line apparently chose to have a lower wage so they wouldn't lose their Social Security. At the time the cap was sixteen hundred a month. I don't know how they negotiated that, but when I was there I was saying, 'Man, I make more than you do and I don't do half the fucking work.'" It's his belief that the government contracts secured by Lighthouse Industries are what fund the entire operation. "That was my first experience with people working for less just to keep their benefits. I made nine bucks an hour and I worked thirty-eight hours a week, and I lost my Social Security and my insurance."
Thinking back on the clock line while considering his new job for JBL, he adds, "I don't think I'll ever understand that. I could work forty hours a week for six bucks an hour and keep my benefits, or I could make fifteen bucks an hour two days a week and make the same money and be happy. It boggles my mind, but I know it's an old school way of looking at it."
At the heart of the question of the declining disability employment rate, two solid and persistent myths seem to be in operation, one held by employers, the other by prospective employees.
Among employers, there is not only the fear of the added financial burden that comes with hiring a disabled worker, but also the presumed necessity of retaining an attorney (a common practice) to guard against the inevitable ADA lawsuits. But that ignores the laundry list of state and federal tax breaks and other benefits afforded businesses that hire the disabled. It also ignores the fact that since 1991, an estimated eighty-five percent of all discrimination suits filed under the ADA have been dismissed for lack of evidence. Finally, the assumed endless list of expensive accommodations demanded by disabled employees was debunked in a 2014 study undertaken by Sarah von Schrader and Susanne Bruyère, whose research found that 95 percent of workplace accommodation requests were submitted by non-disabled workers.
"If an employer stops looking at us as some kind of walking liability, then it's a no-brainer. Of course you'll accommodate."
In the early 2000s, Ollie Cantos was an associate White House advisor on disability issues under the Bush administration. Before and since he's held a number of posts throughout the federal government. Blind since childhood, Cantos has spent much of his life as a tireless and outspoken advocate for the rights of the disabled.
"But then again you don't just accommodate people with disabilities -- you accommodate everybody." If an employer is willing to accommodate working mothers who need to pick their kids up from school, he says, or employees who need to telecommute for whatever reason, they should have no trouble accommodating the disabled.
"In terms of saying 'my gosh another expense,' well, they don't say that when it comes to the lights. If they really want to talk about accommodations, what about this? Gosh, sighted people are such a burden. Imagine all the electricity they waste by having to turn on lights all the time. If you were to take away windows, all that sun that comes in messes with your air conditioning and heating costs. Plus people have to have chairs. You have to buy lots and lots of chairs. People who need wheelchairs bring their own, and blind people don't need the lights. Nobody thinks of any of that. If you really want to save costs, then turn off all the lights and we'll show you how to use a cane. The whole point is it's just how businesses think about this. If they want to look at costs, fact is it costs far more for their own needs than for ours... It sounds preposterous, but the point is if you look at us differently, yes we have special needs but so do they. What matters is the attitude behind it. If you think that persons with disabilities are fundamentally persons with inferior abilities, that's not gonna make me hire that person."
The second, and perhaps even more damning, myth is the one the disabled themselves cling to. Even more than employer reluctance, fear of the Social Security Cliff prevents disabled workers from more actively seeking full-time employment for more than sub-minimum wage. Slater admits it's a motivating factor in his case, given he's lost his benefits in the past, and it's something that has been pounded into my own head repeatedly by the Social Security Administration from the moment I reluctantly agreed to sign up for disability payments. If you make even a dollar more than the stated monthly cap, even though that additional income wouldn't quite bring you up to the poverty level when added to your SSD payments, you'll lose not only that base income, but your health insurance as well. It's a risk few are willing to gamble.
"That's a widespread urban myth that's out there," Thomas Golden insists. "The challenge we currently have in the disability policy framework in the United States is that since the ADA passed we've had a myriad of policies that promoted employment and community citizenship, but unfortunately we never took any of the old policies off the books. The old medical model policies like our social insurance program -- which is very much based on a permanent, full-time disability that precludes you from being able to work -- were never changed. Even though in the 70s and 80s the Social Security Administration implemented a series of new regulatory work incentives that essentially allowed people to receive supplemental security income, to work and still retain a portion of their benefits, they would always make more by working."
But even if the Social Security Cliff is a myth in technical terms, the problem is that nobody has bothered to explain this to the SSA. That's why Slater lost his benefits while working for The Lighthouse as the broadcast assistant and news editor at their radio-based reading service. It's also why every rare instance my freelance income inches over the monthly cap I am besieged by reams of paperwork from SSA asking that I justify every penny of income earned over the previous six years. So perhaps it's no surprise the disabled are reluctant to look for work, and the employment numbers continue to slip.
Cantos, however, is having none of that negativity. "I think we as people with disabilities need to step it up more," he says. "Many people who are part of the community, who don't necessarily associate with those of us who are in advocacy, don't have the belief in themselves they could otherwise have." Far too many, he says, especially those who acquire disabilities later in life, become isolated and lose faith in their own abilities and worth. "They may have the willingness, but they may not believe they'll be treated the same way. Because they don't believe they'll be treated the same way, they end up not being treated the same way."
As for the Cliff, Cantos doesn't deny it's there, but claims there are ways around it. Again, it's a matter of attitude.
"People don't understand the work incentives. I challenge anyone who says, 'Well, there's this cliff, and I have this cap and I can't make more.' Well if you take advantage of the SSI work incentive rules then you end up making more along with your SSI than you would just sitting there. There are incentives where you can keep your SSI and your Medicare if you know how to use the work rules. It can pay above that limit. This is what people don't realize. Even if you make over that limit, you can deduct work expenses off the top of that gross top income calculation. Any costs associated with the disability you can deduct off the top. You can make what the annual limit is, even make a little more than that, if you have the deductions that lower the threshold. It takes out of the box thinking like that. The goal shouldn't be to make just under that, the goal should be to optimize. Utilize the rules. We people with disabilities need to exercise greater personal responsibility. That's not to say they're a bunch of whining, no responsibility people. That's not what I mean. We can't blame the world outside the disability community for all our unemployment issues."
Even if you dismiss all the myths and fears, however, at street level it still remains nearly impossible for people with noticeable, inescapable disabilities to find regular work. The trick whenever possible seems to be simply not mentioning to a would-be employer that you're disabled. But that's not always possible. Which brings us to the job placement services offered by city, state and federal agencies.
"I don't know who they actually help in the long run," Slater says of the career placement counselors he dealt with at The Lighthouse. "They were able to get jobs for people whose vision was far worse than mine, but I think that's because they were getting them into low-paying, shitty jobs, like busing tables. You know, things a blind person can do. No challenge or anything like that." Worse, he described instances where the counselors would accompany him to interviews and do much of the talking, which only emphasized the general impression the disabled were helpless, useless, and would need to be led around by the hand. The counselors' involvement, he believes, may well have prevented him from getting a few jobs.
"I was kinda hoping to get a career, not work at McDonald's," he says. "I don't need your help to get a job at fucking McDonald's. They weren't able to place me in anything I wanted to do. I was saying, 'Well, I have this career path, this is the sort of thing I'd like to be doing,' and they were saying, 'We could send you to this crappy job. What you want is beyond our resources.'"
Within the world of vocational rehabilitation counselors, they're known as "26 and Closers," which those in the know described to me as indecipherable bureaucratic jargon. If you can place someone in a job, any job, and they remain employed there for 90 days, then you can put it down in the file as a success. The goal is to rack up as many "26 and Closers" as possible, which looks very good on a VR counselor's record. It doesn't matter if the jobs in fact end after 95 days; so long as you hit the three-month mark your work is done. It leads, by its nature, to a revolving-door policy. Once one crappy job ends after, say, four months, then you return to the counselor to get placed in another crappy job.
Frustrated with his job counselors, Slater returned to school in 2009 and received a BFA in audio engineering. Then he returned to The Lighthouse in 2013 with his new degree in hand to see if that might help matters.
"At this point the Lighthouse had these contracts with the Indiana Tollway. They wanted me to work the phone center for people who had complaints. So people would call in to complain and I'd have to type in all the information. Anything else I wanted to do was beyond their means. They couldn't help me get a job in my field. 'We're gonna get you whatever the fuck kind of job we can.' But I guess it works for some people."
All of the job placement counselors I contacted told me they'd been informed by their supervisors they were not allowed to talk with me, at least not as representatives of their assorted agencies. To be fair, however, job placement counselors for the disabled have been saddled with a nearly impossible task, finding work for tens of thousands of often untrained and inexperienced disabled people within an American workforce structure that sees them at best as a burden, and at worst is scared to death of them. In the midst of my own dealings with the agencies in New York, I often found myself wondering just what I was expecting these poor slobs to do. Finding me a job in my chosen field was out of the question, as my chosen field no longer existed. What they could do, considering the rest of their caseload, is point me toward some low-rent job with an employer (like the mop factory) with whom they had a contract. Apart from grunt work and those few businesses that make a political point of being do-gooders, precious few American employers were willing to consider hiring the disabled, which is not the fault of the counselors.
In the end, recognizing the well-meaning futility of their efforts, I was more than a little embarrassed at having asked them for help in the first place. I had been working in one form or another since I was nine. So now that I was 50 and blind, what made me think I was suddenly entitled to ask a social services agency to help me find a job? But my situation was unique. I could find my own job, same as I always had, but not everyone in the disabled community has that freedom.
At times it can seem (if you're the paranoid type) the whole system is a fiendishly insidious plot designed to prevent the disabled from working, to keep them veritable slaves on the SS rosters and well out of the public eye. Feeding that impression is the lack of coherence among the state and federal programs supposedly set up to help them.
"What you have are all these residual programs but no real cohesive return to work agenda in the United States," Golden says. "We have over 250 programs at the federal level that intersect the lives of people with disabilities, but there's never been an effort to try and align them."
As with the Civil Rights Act, it seems any substantial change would require a fundamental and revolutionary overhaul of the collective perception of the disabled, both on the part of the non-disabled and the disabled community alike. At least half the existing government programs are based on a medical model -- that is, a focus on fixing the individual instead of revamping the overarching social atmosphere to encourage a wider sense of inclusion. But before any such thing can happen, both Golden and Cantos agree, the disabled community is going to have to figure out a way to present a unified front. It's trickier than it might sound, given the levels of resentment and distrust within what is in fact a deeply splintered community. The fight over sheltered work and sub-minimum wage is just one battlefront. More contentions arise when you realize over time a form of caste system seems to have developed within the disability community. For some reason, the blind get treated far better under federal programs than the deaf, the developmentally disabled, or paraplegics. The blind tend to receive higher disability payments, more widespread benefits, and the subconscious urge to warehouse them seems less pronounced. It's led to some deep and bad feelings within the larger community.
Golden, who has been forced to explain the disparity at any number of disabled workshops, argues simply that the blind have a better lobby.
"I think the more difficult part of that becomes how do you take very institutionalized programs and practices, and there is a marginal population out there that values them, and make those changes in a democratic society?" he wonders. "There are people who are going to lobby to keep what they've always had, cause better the devil you know than the devil you don't know... So when you can't even get the disability community together as to how we can fix the problem so that we can move ahead, it's not going to get attention from congress or any administration in the White House.
Revamping and streamlining government assistance programs aside, the real solution to the question of disability employment seems to require both that the stratified disability community set aside its overwhelming sense of victimhood, and that society at large stop looking at the disabled as victims. It's unclear what could possibly bring either of those about, but if the legacy of the Civil Rights Act is any measure, it's entirely likely, as Cantos points out, that we will still be asking the same questions thirty years down the line.
Published February 16th, 2016
Jim Knipfel is the author of Slackjaw, The Blow-Off, These Children Who Come at You With Knives, and several other books.