Sometime during the middle of the 1990s, a notion began to spread throughout the system of nonprofit agencies that purported to be helping workers with disabilities. Midsize and small agencies, through their boards of directors and leadership personnel, believed they needed to act more like business. This idea was accompanied by yet another round of efforts to refocus on describing what had primarily been sheltered workshops and work activity centers. More and more, the agencies used a host of alternative names: “community rehabilitation provider,” “employment services organization,” “disability nonprofit,” and “supports provider.” These two symptoms were part of a larger illness—the same one that had plagued these agencies in the past—What are we? Employer, trainer, or business?
To act like a business would be interpreted by most to mean that if only these organizations were viewed through the lens of business processes first, and human-service operations second, all would be well. This is a complaint I have heard since first starting work in the disability industrial complex thirty years ago, usually from a board member piping up at a meeting. Like other nonprofits, the agencies have volunteer board members, local business leaders, politicians, and others such as the area school superintendent, public-health director, and a few family members. In my experience it is those board members not in human services who are the most vocal. Eager to share their expertise, those folks would often say things like, “We’ve got to view this budget like I do at XYZ Inc.” The premise is that human-service leadership and the accounting personnel do not have a clue about how to run a business. In my experience, however, it is these agencies that must figure out how to fund programs and services when the economy has a downturn and the tax coffers are depleted. Still, the notion that the community rehabilitation providers (CRP) would be just fine if they applied some fiscal discipline and listened to their business-minded board members took off rapidly. The discussion about vision, mission, and values happened after the board, and the CEO or executive director, had beat the drum loudly for a fervid calling to embrace some vague business practices. The idea trickled down to middle management, which pushed the idea to the staff doing the frontline work. “You’re not in rehabilitation, you work for a business,” is how one CEO started to put it. Of course, it’s not unorthodox to approach nonprofit operations with the mindset of utilizing best-practice business tools, it’s just that the concept, like many innovations in the disability industrial complex, didn’t go much farther than slogans and jargon. “We’ve got to get serious about CQI,” and “revenue maximization is the key,” resounded throughout the late 1990s. As the 2000s began, more emphasis was put on looking to the field’s top players for emulation. The belief began circulating that if the little sheltered workshops didn’t respond, another, larger CRP would gobble them up, as in corporate mergers, buyouts, and cutthroat competition. Why and how these things were looming on the edges of the human-service system created to assist workers with disabilities was never clear, but at one point I was assigned business books to read and marketing conferences to attend, and I received what could only be called remedial Accounting and Budgeting 101. The boogeyman who would lay waste upon the little guys had a name: Goodwill.
Founded informally in 1895, Goodwill started from humble beginnings. Edgar James Helms, the man who began Goodwill, got his start through the ministry of the Morgan Chapel in Boston. The city had become a place where tenements and social vices were intricately linked together. Helms believed that instead of simply providing charity and public assistance, a man needed to find a way to contribute to his own betterment. Of course, that also included following specific religious principles, most of which had to do with resisting the temptation of known vices such as alcohol, prostitution, sloth, and gambling. Helms walked the streets, going door to door, carrying burlap bags from Thomas Wood and Company, seeking donations of anything of value. By 1902 Helms was asking the wealthy in Boston to fund his endeavors, but an economic downturn found those patrons with less money to contribute to his work with the poor. Instead, Helms began asking for on-hand donations, like clothing, used housewares, and furniture. To distribute the clothing to the poor, he would spread out the items on the church pews and invite people to take what they needed. The process proved burdensome, however, with some riots and arguing over prime pieces, so Helms came up with the idea of creating a small store at Morgan Chapel, where those same poor people could purchase clothing and other items of necessity for token prices. At the time the name of the organization was Morgan Memorial Goodwill Industries. Seven years later, in 1909, motorized trucks were first used in a more formalized fashion, replacing the burlap sacks as the mode of transporting donated items. In 1918 the Soldier’s Rehabilitation Act was passed to assist veterans returning home from World War I; it created federal funds that could be used by nonprofits. Goodwill began the process of weaning its mission and practices away from religion, since the organization was now eager to receive federal tax funds to operate some of its programs. Perhaps a prescient Helms told the leadership and board at Goodwill, “We will be out of business if Goodwill does not take over work with the handicapped people.”1
By 1938 a similar approach was being sponsored in Utah by the Church of Jesus Christ of Latter-Day Saints. Like Helm’s approach with Goodwill, the Mormons created an informal program to address the same issues, identified not so much as social inequities but rather as weaknesses of the soul. They named the program Deseret Industries and claimed the approach would solve heathenistic tendencies. “The curse of idleness would be done away with, the evils of the dole abolished, and independence, industry, thrift, and self-respect be once more established among our people.”2 Like the poorhouses before them, these two religiously oriented organizations were rooted in viewing public assistance for the individual, whether from federal or state resources, as a type of sin. It could be said that Deseret Industries was one of the first human-service agencies that tried to emulate Goodwill. Today, Goodwill represents an operating budget of $42 million annually and has become one of the most recognized nonprofit organizations in the United States, with a worldwide network of 157 entities spanning twelve countries.3 Goodwill was one of the first national organizations to obtain a 14(c) subminimum wage certificate from USDOL. It was these attributes, and the fact that most Americans know, at least topically, what Goodwill does, that instigated an expose.
The abuses and neglect in Iowa at Henry’s Turkey Service, including the financial exploitation, brought closer scrutiny from disability advocates across the country. At the National Federation of the Blind, President Marc Maurer decided to follow in the footsteps of his predecessors at NFB and make subminimum wages once again an issue that must be addressed. He didn’t need to look any further than the “Segregated and Exploited Call to Action” report from Curt Decker at NDRN. But if Maurer was going to get anyone’s attention, the focus had to be laser sharp, attached to something that the average American had at least some familiarity with. Using human-service lingo like “14(c)” or even the phrase “subminimum wages” would only create more filters to understanding the issue. Maurer opted to use a household name to get the public’s attention.
Maurer had been the president of the NFB for twenty-five years when he decided to arrange for the boycott of Goodwill over its use of subminimum wages. He was only the third president in the prestigious organization’s history since its founding by Jacobus tenBroek. Dr. tenBroek was also a constitutional law scholar, a civil-rights activist, a leader in socialwelfare reform, and a distinguished national and international humanitarian. He won the rights of blind people to apply for and be hired into federal civil-service jobs. He was a prolific and gifted writer, and Marc Maurer knew the presidency of NFB would always be measured against the impressive work of tenBroek. But Maurer was not a lightweight either. By the time he was a teenager, he ran a paper route, a lawn-care service, and had even created an enterprise producing and marketing maternity garter belts designed by his mother. This last venture was so successful that his younger brother took over the business when Maurer left home.4 He had also taught himself to disassemble and reassemble an entire car engine, quite a feat for any young person, but Maurer, like all NFB’s presidents, was blind, a condition caused by overexposure to oxygen after his premature birth. When he was just twenty, Maurer was elected vice president of the Indiana chapter of the National Federation of the Blind. He received his undergraduate degree from Notre Dame and went on to the University of Indiana School of Law, where he received his doctor of jurisprudence in 1977. By 1981 he was in private practice in Maryland, where he quickly became a subject-matter expert in legal cases where the plaintiffs’ sole condition keeping them from fair treatment was their blindness. He took on cases of discrimination, using his keen mind and powers of articulation to win cases. In short, he was a force to be reckoned with, and he was keenly aware of the history the NFB had continued to play in the debate surrounding work, pay, and labor conditions for workers with disabilities.
In the summer of 2012, Maurer was ready to implement a tactic that he hoped would get the attention of average, busy Americans, most of whom would likely recognize the name of Goodwill but who would not know much about the NFB or its advocacy history. Maurer knew the approach, a concise and inciting flyer, would ruffl e feathers, to say the least. He tapped Anil Lewis, the director of policy and research at the NFB, to ratchet up the salient points of the issue. To most Americans Goodwill’s image centered on their store fronts, where one could donate, snag vintage clothing, procure used kitchen utensils, books, and even a couch for a dorm room. While some shoppers knew Goodwill also employed some people in the stores who had disabilities, however, they weren’t aware of the 14(c) practices that supported some of the Goodwill employees. The NFB flyer read in part, “Did you know that some Goodwill workers with disabilities are being paid as little as 22 cents per hour? It may be legal, but it is not right.”
The flyers went viral, at least inside the disability industrial complex. The NFB was bombarded with phone calls and emails; some were negative, from people who believed Maurer and NFB had ambushed Goodwill. Still, the boycott of the stores that fall of 2012 was not very successful. Only a handful of people showed up, passing out flyers, while some toted protest signs with “22 cents per hour” scrawled with exclamation points at the end. Only a few local news stations decided to make the effort to cover the boycott. Maurer was undeterred and set out to broaden the appeal. He sent a young woman named Rose Sloan, also blind, to attend the 99 percent rallies used during the 2011 Occupy movement in and around the DC area. Her technique was simple: she would ask the protesters in attendance whether they were aware that some workers with disabilities were legally paid pennies on the hour for their labors. Most were stunned to find out the truth. She passed out flyers. The approach was about raising awareness: Maurer and the NFB were focusing on Goodwill, but there were thousands of nonprofit rehabilitation providers around the country doing the same thing, embracing the law that allowed demeaning pay rates; they were not big names, though, and the goal, the reason to set out on the path in the first place, was to garner enough notice that news outlets might be interested in coverage.
It had been three years since the men had finally been rescued in Iowa, and just a year after Curt Decker at the NDRN had crafted the “Segregated and Exploited Call to Action.” The window of opportunity was marginal, and the advocates and leaders working to abolish section 14(c) had seen at least some of this story before; that is, a news story of abuse is highlighted and after an initial round of outrage, not enough is done to use the exposés and coverage to effect real change (think Willowbrook, Christmas in Purgatory, the Wall Street Journal exposés, and the Jackson class-action lawsuit in New Mexico). The average citizen cares, but there’s competition for attention; acting fast is good but acting so that the information is salient and accessible is better.
Curt Decker had been working behind the scenes with the large rehabilitation and disability trade agencies, some of them well funded and powerful, located in the heart of the capital’s lobbying district. His decision to highlight the abuses of Henry’s Turkey Service was purposefully crafted, with a focus on the unintended consequences of a lawful statute like section 14(c). He said, “I went to talk with the leaders of these trade groups, and of course it was already fraught with the intensity of disagreement.” Decker had been a leader in civil rights and disability rights for decades, an attorney with a law degree from Cornell. He has been affiliated with the NDRN since its inception in 1982. As executive director of the nation’s largest nongovernmental enforcer of disability rights, he has seen abuse and neglect that would shatter most people. “I’m a mix between an incrementalist and a staunch advocate. Change is a fight in any cause, but when it comes to something as misunderstood as disability and civil rights, one has to partner where they can, and trust that persistence and passion will be a catalyst for change.” Before founding the NDRN with other like-minded activists, Curt served as director of Disability Rights of Maryland. Decker has been immersed in fighting the good fight in other human-service roles, serving as the director of an entity that served abused and neglected children. He was a VISTA worker prior to taking on the role of senior attorney for the Baltimore Legal Aid Bureau for five years. The meeting with the trade groups that were highly enmeshed in utilizing section 14(c) was intense. At first, in the blinding light of the story of the men in Iowa, there was an amendment on the table to reverse the removing of the “minimum, subminimum wage,” that the trade organizations had lobbied Congress for back in the late 1980s. It could be seen as a paltry attempt by the trade organizations to appear to solve the most abhorrent issue under 14(c). Senator Harkin from Iowa and others suggested putting it back at half the current minimum wage, but the trade groups balked. More behind-the-scenes discussions occurred, and it was resolved to present the trade organizations with a floor for section 14(c) of one-third the minimum wage. “They kind of lost it,” Decker told me. “I’d been on the record pushing for these organizations and their members to get busy with revamping their business models, but they were visibly upset at this meeting.” The DD network, of which the protection and advocacy organizations in each state are a part and are funded by Health and Human Services, is in place precisely for policy issues like this. There’s a natural push and pull between the trade organizations, which represent the desires of the providers agencies, including sheltered workshops and day activity centers, and the disability-rights organizations represented by the NDRN and Curt Decker. “They were vehemently opposed to changing the wage floor. They said they’d be out of business if they had to pay their workers a third of the minimum wage.” That hourly wage would have been $2.39. It was inevitable that the issue of CEO pay at these organizations would be considered. Once leadership of the trade organizations raised claims of bankruptcy, this was the logical next step for many interested in pushing the issue of section 14(c) abolishment. Freedom of Information Act (FOIA) requests were made, furthering the animosity of some of the agencies that felt they were being targeted unfairly. There are many excellent nonprofit agencies operating within the disability industrial complex, some of which were started by families, but numerous organizations that were small five decades ago have grown into large enterprises, dependent on cheap labor and revenue from their sheltered-workshop contracts to fund operations, while also billing state and federal funders for training. Many of these organizations, some of which I’ve worked at or consulted with, will say the profits they make from paying subminimum wages are meager, but this is not true across the board; and while it may be true at some organizations, they are also deeply attached to a business model steeped in billing to “rehabilitate” or “habilitate” the people they are also employing. It’s not surprising, then, that Decker and the NDRN encountered some conflict as the work to overhaul an outdated wage system was considered. Like a house of cards, once subminimum wages and its rationale are pulled from the foundation, all the other interventions that are billable are also at risk, and a system built upon erroneous beliefs instead of evidence-based practices is threatened.
Shortly after the exposure of Henry’s Turkey Service, Iowa senator Harkin took another run at hosting congressional hearings related to section 14(c). The trade groups were on high alert, unable to acknowledge the abuses related to subminimum wages. For the most part, the trade groups tried to make out the horrific outcomes in Iowa as isolated incidents, perpetrated by bad actors. They called for each state to do more to provide oversight, but that wasn’t exactly instructive: Wage and Hour personnel and Social Security investigators had been on site to do just that in 1979, to no avail.
ACCSES is the largest of these lobbyist trade groups, and its tagline is “the voice of disability service providers.” On its website, it justifies its position regarding 14(c): “Successfully fought efforts to eliminate worker protections under Section 14(c).” Both state and national trade organizations inside the disability industrial complex use language to their advantage in this way. By stating that the efforts of ACCSES helped to fight the elimination of worker protections, the organization doesn’t reveal that it fought to keep 14(c) exploitation legal and opposed any type of regulatory additions to provide safeguards.
ACCSES opposes the elimination or phasing out of the Section 14(c) program for all or a subset of the population of persons with the most significant disabilities. ACCSES also opposes the imposition of an arbitrary floor (e.g., 30% of minimum wage) with or without exceptions. People with disabilities must retain their right to make informed choices and exercise the right to self-determination. Individuals with the most significant disabilities must not be denied the opportunity to work in a center-based employment at a wage that reflects their productivity. Eliminating or repealing Section 14(c) or setting an arbitrary floor will simply have the effect of denying the opportunity to work for individuals with the most significant disabilities who cannot meet the productivity standards.5
This sounds like sincere advocacy efforts, and it is, but remember their tagline: The Voice of Disability Service Providers. To the public, most people don’t differentiate between what Curt Decker and NRDN is doing versus ACCSES, and that’s in part purposeful.
Senator Harkin’s hearing before the Senate Committee on Health, Education, Labor and Pensions was set up to examine the systems, policies, and loopholes that had created the detrimental elements at play at Henry’s Turkey Service, which had occurred unchecked for thirty years in his home state. Harkin was a powerful politician with connections to not only the landmark ADA legislation but to some of the leadership personnel at ACCSES, specifically Bobby Silverstein, a lawyer and behind-the-scenes player in the intergovernmental workings of creating the ADA and procuring political support for it in 1990. Bobby Silverstein was a lobbyist for organizations such as the Coalition to Preserve Rehabilitation, the American Congress of Community Supports, and the National Association of Rehabilitation Research and Training Centers. Silverstein, curiously, was against abolishing subminimum wages. In discussions off the record, several people said they believe Silverstein convinced Senator Harkin to wait, to include restrictions on subminimum wages in a larger bill, something that ACCSES had been public about in its legislative priorities. ACCSES was a staunch defender of keeping section 14(c) in place. In the end, these hearings did little more than those before. They informed the debate, brought out passions and set the groundwork for a flawed legislative solution.
The reaction of the trade groups vested in maintaining subminimum wages for workers with disabilities would also surface when the NFB pushed further on the Goodwill boycott. By the fall of 2013, there were over 220,000 petitioners signed onto an effort to get Goodwill to change its practices.6 While the boycott had gotten a slow start, average Americans were beginning to understand a disturbing fact; as in corporate America, those at the top of the disability-employment programs were paid many times more than those at the bottom. After NBC aired a piece by Harry Smith, called “Wage Wars,” regarding Goodwill and its pay practices, both the NFB and ASAN (Autistic Self-Advocacy Network) ramped up petitions at change.org. Word seemed to spread, and people responded. “A minimum wage is the absolute least a company can and should be able to pay their employees, regardless of disabilities. The minimum wage is already terribly low as it is, paying even less than that is horrible and should be criminal,” said an observer.7 Another put it bluntly: “The executives who are paid half a million per year or more enjoy their exaggerated wages through the underpaying of autistic workers who cannot defend themselves from being paid wages so minuscule that they should be outlawed. The millionaires are the parasites, not their victims of wage reduction by theft.”
The country was just starting to recover from the economic downturn caused by the CEOs of corporate banks considered too big to fail, and sentiment was strong that something needed to be done. Hundreds of thousands of signatures demanding policy changes at Goodwill were delivered to the company’s Rockville, Maryland, headquarters and to five regional offices in New York, California, Texas, Washington, and Rhode Island. On the main page of Bill Moyer’s website, a photo depicted a Goodwill storefront replete with a sign asking for donations; the prominent caption read, “Thanks to a 75-year-old loophole, nonprofits like Goodwill can pay workers with disabilities as little as 22 cents an hour.” The message the NFB set out to amplify was working, but Goodwill had lobbied behind the scenes to keep subminimum wages. Goodwill was not deterred by the coverage; Brad Turner-Little, a Goodwill spokesperson told In These Times that the NFB boycott had had no discernible impact on the company’s retail outlets.8 “We’ve actually experienced growth in retail sales.” However, Goodwill had to realize a national news piece on prime-time television, and FOIA requests highlighting the extraordinary pay of its executives would certainly shine a light on disparate pay practices. The income of CEOs of Goodwill franchises across America totals more than $30 million annually. Goodwill understood its position and acted quickly.9 Its corporate website page announced in all caps: “WE WELCOME THE CONCERN THAT MANY AMERICANS HAVE SHOWN FOR IMPROVING EMPLOYMENT OPPORTUNITIES AND QUALITY OF LIFE FOR OTHERS IN THEIR COMMUNITY, WHICH HAS BEEN A KEY ELEMENT OF GOODWILL’S MISSION FOR MORE THAN A CENTURY.” Below, the justification continued: “As North America’s leading nonprofit provider of employment training, job placement services and other local programs for people with severe barriers to employment, Goodwill takes these concerns seriously. Get the facts about Goodwill’s employment of people with disabilities and learn first-hand from the people who have benefited from Goodwill services and work opportunities.”
Perhaps it is understandable that Goodwill, its board of directors, and its leadership would feel they had been smeared; they have helped thousands of people find work, some with disabilities, others with barriers related to socioeconomic disadvantages through TANF (Temporary Assistance to Needy Families). Over the years I have met kindhearted, dedicated professionals who work at Goodwill. In the heat of the controversy, though, Goodwill could have stated for the record that it too believed that paying workers with disabilities so poorly, even if legal, was outdated. It could have said that the organization, its board, leadership, local agencies, and the corporate nonprofit in its entirety would work to design new practices, including changing their business model away from subminimum wages. Instead, like the smaller nonprofit sheltered workshops and work activity centers that looked up to Goodwill, it recruited families of the workers being paid subminimum wages to tell their story, an old practice in the disability industrial complex when a state legislature is cutting funds or asking provider agencies to show the outcome of the funds they receive. It doesn’t take much searching to find references to “disability inspiration porn,” a phrase meant to convey how we tend to place people with disabilities, and in this case, those with intellectual disabilities, at the center of our pity.10 I’m always on the lookout for these stereotypes because the insidiousness of the pity mindset is likely one of our most significant challenges.
Goodwill used a variation on this mindset. It tapped its director of advocacy and legislative affairs to create a white paper on the use of section 14(c). The cover reads: “This paper provides an overview of Section 14(c), discusses why preserving the tool is important to individuals with disabilities and Goodwill, and provides recommendations to strengthen the use of special minimum wage certificates.”
The white paper explains what the FLSA 14(c) special wage certificate is, and curiously cites the congressional hearings, which are both critical of and concerned with the way in which subminimum wages are determined and justified. The authors of the white paper tackle the history of Goodwill’s use of section 14(c) and then lay out their perceptions of the issues, which again do not line up with congressional concerns Congress had with subminimum wages. There are solutions posed by Goodwill, and recommended actions, and then a portion that perpetuates the poster-child mindset, a story about a father and son. Goodwill’s method of telling the story repeats something I’ve seen many times in many different states, usually during a legislative session proposing change or putting outcome restrictions on the use of the funds appropriated inside the disability industrial complex. In the Goodwill white paper the father and son are pictured, the grown son hugging his father—a sweet image, of course, but one that also propagates the notion of the “eternal child.”
Even before we finish the short narrative (seven brief paragraphs) of the father and son, we know there will be multiple heroes, one of which is inevitably Goodwill itself. We are told that the man with the labels of trisomy chromosome imbalance and other disabilities was abused by another human-service provider, that he was assaulted at the age of ten. We can see the small child being hurt by those who are supposed to care for him, a heart-wrenching tale. We are let in on the child becoming an adult and how the father left no stone unturned but ended up again with a provider of services that his son didn’t respond to. The father hears of Goodwill and decides to give them a chance. The son is transformed. We are to understand that subminimum wages are part of his miraculous recovery. A sentence reads in part, “Goodwill provides employment and vocational training to people with multiple and/or severe disabilities under a special minimum wage certificate.” Here, we are to accept several things: One, these are workers with lots of problems! Two, though not referenced as “subminimum,” the wage is described as “special.” The authors realize that “subminimum wage” sounds bad, but “special minimum wage” invokes the Special Olympics and all that it has come to represent. Under the lens of disability studies, the story purposely summons the old stereotypes that citizens with intellectual disabilities in the United States are made subject to.
An internet search of the phrase “eternal child” produced an advertisement from Angel Sense, a company that markets a GPS device to be attached to the ankles of children and adults. A website with many photos of people with the label of Down syndrome, Angel Sense claims that it allows people to live independent lives, but it markets the GPS device to control “wandering or running off, oppositional behavior,” and the vague and worrisome “changes in adulthood.” It is uninformed and purposefully ignorant of concepts like self-determination, dignity of risk, and civil rights. The Goodwill white paper attempts to include self-determination in its solutions. In the disability industrial complex, the same one that Burton Blatt, Marc Gold, and others first identified as problematic enough that it might indeed be creating its own self-fulfilling prophecies, practitioners frequently take the strong, well-intended concepts of systemic change and transform them into their own interpretation. For instance, the Arc, the national organization at the forefront of attempting to ensure that citizens with intellectual and developmental disabilities have civil rights, defines self-determination in a way that is incongruent with the term as used by the Goodwill authors in their white paper that advocates to keep subminimum wages. The Arc interprets this concept as: “People with intellectual and/or developmental disabilities (I/DD) have the same right to, and responsibilities that accompany, self-determination as everyone else. They are entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf.” This is an important distinction. Since the early 1990s researchers, advocates, families, and people with disabilities have worked diligently to create a standard definition and set of principles by which to guide the application and implementation of self-determination inside the disability industrial complex by those who receive the bulk of the funding to support people with intellectual and developmental disabilities.
The Arc states, “People with I/DD have the same right to self-determination as all people and are entitled to the freedom, authority, and supports to exercise control over their lives. People with I/DD must understand that they can direct and influence circumstances that are important to them. This right to self-determination exists regardless of guardianship status.”11
The principles of self-determination have been researched widely, and much of that work has been done by one man, Michael L. Wehmeyer, PhD, the Ross and Marianna Beach Distinguished Professor in Special Education and chairperson of the department of special education, as well as director and senior scientist at the Beach Center on Disability, all at the University of Kansas. Dr. Wehmeyer has received funding from multiple federal agencies to conduct research and model leadership preparation activities pertaining to the education and support of youth and adults with intellectual and developmental disabilities. He is the author or coauthor of more than 450 peer-reviewed journal articles or book chapters and has authored, coauthored, or edited 43 books on issues pertaining to self-determination, positive psychology and disability, the transition to adulthood, the education and inclusion of students with extensive support needs, and technology use by people with cognitive disabilities. Wehmeyer wrote a fascinating, but heartbreaking book on a family ravaged by the practice of eugenics, Good Blood, Bad Blood: Science, Nature, and the Myth of the Kallikaks. The book follows the true story of a woman who was given the pseudonym Deborah Kallikak and who became the poster child for the cultural fear generated by American eugenicists. Those same eugenicists provided the Nazi regime with the excuse to take the eugenic horror to its ultimate conclusion.12 Wehmeyer is coauthor of the widely used textbook Exceptional Lives: Special Education in Today’s Schools (2020), published by Merrill/Prentice Hall and now in its ninth edition. Wehm-eyer’s text Development of Self-Determination through the Life Course (2017) is a seminal look at the impact of embedding self-determination at early ages on the adult lives of people with intellectual and developmental disabilities; it has been used in creating life paths for neurodiverse youth. Not surprisingly his dedication to reform resonates, and he was awarded a Burton Blatt Humanitarian Award for his work. I asked him whether self-determination can ever include subminimum wages, segregation, and poverty. Are people with intellectual and developmental disabilities truly choosing anything if the principles of self-determination are hijacked by the very agencies that benefit from making those choices align with their funding? He responded, “It’s a misapplication of a very powerful set of principles designed to liberate youth and adults with disabilities from the systems that tend to focus on programs rather than people. The real question for these types of misnomers of best practices lies in the creation of a set of choices that reflect those that we all make. In other words, it’s not about self-determination in relation to systemic choices, but having the power to choose how to get what we all want, which includes work, family, community, connection and safe places to live.”
Like most large, bureaucratic multilayered systems, the disability industrial complex tends toward mirroring what a funder is asking for; since that requires taking strong, fidelity-based approaches like self-determination to scale, the organizations believe they must water down the original value-based concepts into easily tracked check-off lists. This tendency can be seen in special education, vocational rehabilitation, and the Medicaid waiver programs designed to support people in community settings rather than day programs, sheltered workshops, and congregate living schemes.
The fuller fleshing out of these concepts and the implementation of them in relation to personal and community lives is reflected by the national Arc, on which Wehmeyer has had a significant influence. “Family members, friends, and other allies play a critical role in promoting self-determination by providing supports and working collaboratively to achieve the individual’s goals. Families, friends, and other allies should understand, recognize, and promote the rights and responsibilities of self-determination and respect the limitations on their own authority. Service providers, educators, and substitute decision-makers must recognize and respect the individual’s right to self-determination and the limitations on their authority.”
To this end, people with I/DD must be able:
• In their personal lives to:
◦ lead in decision-making and problem-solving about all aspects of their lives and have the supports they want to make decisions;
◦ advocate for themselves with the assurance that their desires, interests, and preferences will be respected and honored;
◦ choose their own supporters, friends, and allies;
◦ direct their own supports and services and allocate available resources;
◦ hire, train, manage, and fire their own staff;
◦ acquire additional skills to assist in determining the course of their lives;
◦ use adaptive communications devices and other assistive technology; and
◦ take risks to achieve the lives they desire.
• In their community lives to:
◦ participate fully and meaningfully in the community;
◦ receive the necessary supports and assistance to vote and exercise other rights as citizens;
◦ become valued members and leaders of the community;
◦ serve as active members and leaders of community boards, advisory councils, and other organizations;
◦ take leadership roles in setting the policy direction for the selfdetermination movement; and
◦ have representation and meaningful involvement in policy-making at the federal, state, and local levels.13
This is important because the concept of self-determination reflected above is about the person, not the system, or the nonprofit agency receiving taxpayer funding. Nowhere in this specific definition or in the set of guiding principles does it state, imply, or enumerate the right or responsibility to be subjected to unequal pay, subminimum wages, or other exploitive vocational configurations unlike those of average American citizens. Goodwill’s white paper uses the concept of self-determination to rationalize keeping an unfair, outdated, and specious set of practices. That’s precisely why the example of the father and son is deployed, to give the reader a sense that adults with intellectual and developmental disabilities and their families have the right to choose to be exploited. Goodwill is not the only organization insinuating that it is acting on the choices of the people it is funded to rehabilitate, but it is the largest, most recognizable nonprofit agency to do so. Similar language exists in most of the country’s network of provider agencies. Goodwill’s white paper includes recommendations for increasing the investigations the USDOL performs on section 14(c) subminimum-wage certificate holders, the same division investigating Henry’s Turkey Service in 1979. That investigation proved useless, and it took the sister of one of the men thirty years to get both state and federal government to act. As with the congressional hearings over the decades, USDOL itself has testified that it is not equipped to do much more than a fraction of the oversight investigations of the 14(c) program. The question is not one of increased oversight; the legality of paying subminimum wages should be the issue that’s thoroughly investigated, not an unfair and exploitive loophole that should be better monitored.
I spoke with Ari Ne’eman about his role in 2013 in forcing the issue to the surface by supporting and leading the second boycott of Goodwill. Through Change.org he and the organization he cofounded, ASAN, obtained more than 200,000 petition signatures, and a piece about Goodwill and subminimum wages aired on primetime television. He told me he believed it was the right step, and that without the exposure, the general public would still be in the dark regarding subminimum wages. “It was strategic. After so many decades of nothing being done, with one congressional hearing after another, it seemed the timing was right to up the ante. People on social media responded and we’re furious with Goodwill.” Ne’eman had been a standout in the NBC piece when he asked Harry Smith whether he could stand up to the practice used in section 14(c) wage payments of using a stopwatch to rate his productivity. There with Ne’eman was a married couple, both vision impaired, who had worked at a Montana Goodwill facility hanging clothes. Harold and Sheila Leigland are the epitome of a hardworking American family. Writing for the NFB blog, Sheila provides a testimony of the harm that 14(c) created for her family. It’s reprinted here with permission.
Hello, my name is Sheila Leigland and my husband’s name is Harold. We live in Great Falls, Montana and have been married for thirty years. We both have attended college and have bachelor’s degrees. My degree is in music education, and Harold’s degree is in social science with an extended minor in psychology. We have raised one child, and my husband worked as a massage therapist for over thirty-five years. We are active in our church and are members of the National Federation of the Blind. Two years ago, we had the privilege of participating in the Rock Center piece and speaking at the National Convention of the National Federation of the Blind on the issue of subminimum wages.
We wanted to make extra money to help make ends meet, so we both tried to find work and were eventually placed in a sheltered workshop. We both started working in 2009. I was told that eventually we would make minimum wage, which turned out not to be even close to the truth. Disabled workers are forced to take timed productivity tests every six months so that wages can be reevaluated. Because of the timed-test method, wages fluctuate wildly. It is pretty hard to set up any sort of budget when you never know how much you will be making from month to month.
In February of this year, Harold was up for another timed-test evaluation. We were very concerned because a committee met to discuss changes in the format of the timed test. It turned out that Harold’s test was extremely long. In the past, the tests took thirty minutes to an hour, but this one took four hours on the first day and fifty minutes on the day of his next shift. Harold was to place five toys in a bag and divide them as objects that were alike in some way. Sounds easy, right? No, it wasn’t easy at all! Many of the items weren’t identifiable by touch, and many of the features that would help with their correct placement were exclusively visual. Harold and I are both blind. Even some people with perfect vision had difficulty with the task, so they resorted to sorting the items by color, which of course Harold could not do.
As I said, both Harold and I are college-educated adults. There are many jobs that Harold can do, but he was deliberately assigned a task that would be difficult or impossible for him and then timed on how quickly he could do it. Rather than placing Harold in a job that matched his skills and interests, the sheltered workshop appears to have set him up to fail so that he could be paid a lower wage.
When my husband came home from work, I knew that the test had not gone well because he told me that he didn’t want to talk about it. I told him that we would work through this together. When we finally talked about it, I found myself talking with a person who was demoralized and felt that he was letting me down. It wasn’t true, but it is hard to accept that you are a capable adult when you are still being treated like a child. It broke my heart to see the man I love in such pain.
I knew that the test had not gone well, but I wasn’t prepared for Harold to be set back to a wage of $2.75 per hour. His previous wage was $7.61 per hour. He is angry and humiliated. I am so angry that it is legal to discriminate against people just because of blindness, or for that matter any disability. It makes me sick that so little is expected of us, and we are treated like children. In fact, I know children that get more money as an allowance than my husband receives in his paycheck.
It is a tragedy that there are people who claim to be advocates for people with disabilities but believe that this is okay. There are people with disabilities who believe that they can do no better because the agencies who exploit them have repeatedly told them and their families that sub-minimum wages are all they can or should expect. In truth, they are victims not of their disabilities, but of the low expectations held by their employers and society.
I want to see Section 14(c) of the Fair Labor Standards Act abolished. I strongly encourage our members of Congress in the House of Representatives to support H.R. 188, which would phase out this law over a three-year period. I also want to see a similar bill introduced in the United States Senate.
We can’t do this alone.
We need your help to get this accomplished. I thank you in advance for your help in this important matter. Section 14(c) is immoral and discriminatory. All that we are asking for is fair treatment. We need and want to be awarded first class citizenship in our own country and this includes making a fair wage. Please, help us live the lives that we want to live.
When I spoke with Sheila Leigland five years after her eloquent and impassionate blog was published online, her feelings had only intensified. From their home in Great Falls, Montana, she told me how she was keeping the fight up. “We tried to get a bill to ban subminimum wages here in Montana, but it was shot down. We knew that would be the case, but you must try. When I worked at Goodwill some of the younger workers with disabilities believed if they took a day off to go to a sporting event they’d be fired. Yes, the legality of 14(c) is still there, but I just don’t know how anyone could think it’s a good practice.”
The NFB remains in the fight. From his Washington, DC, office, the new president, Mark Riccobonno is as creative and energized by advocacy efforts as his predecessor Dr. Maurer. “We’ve never taken a federal dollar because that compromises your advocacy efforts. I see it all the time. No one wants to lose their funding, even a little bit, so a threat to a budget if an organization joins a boycott can be significant.” Riccobonno understands the way the disability systems work, especially their perspective of low expectations.
The Goodwill boycotts would provide an avenue for other organizations to join the fight. The awareness that the boycotts had stirred, along with the NBC piece, created a unified protest to keep intact the legality of subminimum wages. On the twenty-first anniversary of the Americans with Disabilities Act, the groups conducted protests in opposition to the legislation. The focus was on the members of the Senate Committee on Health, Education, Labor and Pensions, where the reauthorization was to occur.
Dr. Marc Maurer, president of the National Federation of the Blind, said, “We are extremely pleased that these organizations are joining us to advocate for equal pay for equal work and an end to the outrageous practice of paying subminimum wages to workers with disabilities. We hope that other members of the disability rights community will join us in speaking out against this unfair, discriminatory, and immoral practice and opposing any legislation that authorizes and perpetuates it.”14
Serena Lowe, who was at the time the executive director of Collaboration to Promote Self-Determination, said, “We are pleased and proud to join the National Federation of the Blind to stop the exploitation of workers with disabilities. It is time for our political leaders to take a stand against exploitation and to fight for true equality for American workers with disabilities.”15
Something critical had been exposed, certainly not for the first time or even the hundredth, but there was a conscious and strategic vision behind the boycotts that had moved from the household name of Goodwill to the more abstruse congressional committee and the recondite underpinnings of sheltered workshops. The NFB had been instrumental in the fight. Anil Lewis, the director of policy and research at the NFB, who doesn’t shy away from the truth, enlightened me in an interview. “I’m a black, blind man from the South. I know racism, but the kind of insidious benevolence that these nonprofits engage in is deeply rooted in the use of segregation and subminimum wages and it’s hard to fight against. And, as I started trying to advocate for the law to be overturned, I had to convince myself that they truly believe they are doing what they think is best for people with disabilities.” Lewis is a man for whom self-reflection is a personal necessity, and he uses that mindset to make sure his actions don’t inadvertently hurt people. He’s reached out to parents of workers with disabilities being paid subminimum wages, and he’s tried not to demonize the people and organizations in the disability industrial complex who fight to keep section 14(c) legal. “When Dr. Maurer came to me and asked me to find a way to introduce a bill to ban subminimum wages, we decided to double down when I was the Director of Strategic Communications.” What Maurer and Lewis in their roles at the NFB were doing was expanding their opposition to paying blind workers with disabilities subminimum wages so that their efforts encompassed all people with disabilities, including those with intellectual and developmental disabilities. It was a powerful and inclusive decision, one that would reverberate throughout the many lobbyists, trade groups, and billions of dollars of funding. It was a statement, but for Lewis, it fit with his views of how human beings should be treated. “I told Dr. Maurer, well that’s simple, a no-brainer, it’s a law that’s still on the books because no one has gone at it directly.” But Anil Lewis was surprised at the reaction to his efforts. “Man, I could not have been more wrong. The whole other side was revealed to me. I realized there was going to be a great deal of political theatre involved.” Lewis was instrumental in pulling in the CPSD Coalition, which has in its membership the National Down Syndrome Congress, The National Rehabilitation Association, and several others. On a call with CPSD, Lewis was confounded when he heard the lead members tell him that they preferred to slow down. “These were organizations that represented, at least in part, those most adversely impacted by subminimum wages, but still they were opposed. It was the beginning of my evolution of understanding what we were up against.”
This battle was different from the congressional hearings over the decades. Sites like Change.org, and the capability to film the protests and upload to social media were ubiquitous. Regular citizens saw, heard, and in some ways, albeit vicariously, participated in the protest. A quick internet search shows people holding protest signs that read, “CEO Salary $500,000, worker pay 20 cents,” or “We need good jobs, not goodwill.”
The message had finally reached the public. By the fall of 2012 and into 2013, it had also resonated with the Department of Justice, which would institute class-action lawsuits on behalf of workers with disabilities in sheltered workshops, in one state on the East coast and another on the West coast. Once again, those battle-weary advocates, Anil Lewis, Lois Curtis, the men from Atalissa, Iowa, and reformers across the country were hopeful that the crack in the facade was widening. The end result was a mixed bag. The other side had money, lobbyists, and their insidious benevolence to fall back upon.