A Legacy of Exploitation: Intellectual disability, unpaid labor, & disability services

     While employment issues have always been an important aspect of disability policy, a focus on paid and formal employment has meant that the experience of many working-age adults with intellectual disabilities has been overlooked. Many erroneously believe the historic absence of persons with intellectual disabilities in the workplace is evidence that persons with intellectual disabilities cannot or do not work. The changing face of disability supports has at times reinforced this belief through the construction of segregated spaces that house and/or occupy unemployed and working-aged persons with intellectual disabilities. Yet a closer examination of disability services reveals a legacy of invisible labor by persons with intellectual disabilities that challenges notions of idleness and questions the sometimes-exploitive nature of disability services for persons with intellectual disabilities. Although not formally classified as labor, contributions that take place within rehabilitation and training programs offered through many disability service frameworks, illustrate a capacity to work and contribute, as well as the necessity of this labor to the administration of some disability supports and services. What I argue here is that a brief look at the everyday experience of many within rehabilitation and training programs, both inside and outside of the institution’s walls, reveals the embedded nature of this labor as a central and necessary function within the delivery of many services and supports for adults with intellectual disabilities. This reality needs to be recognized and addressed in order to achieve more equitable labor relations for persons with intellectual disabilities.

Behind the Institution Walls

Although deinstitutionalization has largely shifted the delivery of many disability services into the community, historically the institution served as an important site of unpaid labor for persons with intellectual disabilities. Despite the reality that many of those incarcerated within these sites were believed to pose a threat because of their perceived idleness, evidence that has emerged indicates a rhythm of institutional life in which unpaid labor served an important function, both in terms of individual experience and the ability of these institutions to function effectively and efficiently.

     By the 1920s most institutions had begun “prevocational” and “vocational” training for kindergarten aged inmates.[1] This training consisted of tools children were encouraged to integrate into their play, and by six years of age “young inmates were learning to how to hammer a nail, punch holes in leather, or wash rags on a miniature washboard.”[2] Work assignments were based heavily on sex and ability [3] and work was a central aspect in institutional learning for persons with intellectual disabilities. However, this labor extended beyond the learning environment as patient labor served an important function for the administrators of these sites.[4]

     Thomas F. Allan’s narrative, as illustrated throughout the book Deinstitutionalization and People with Intellectual Disabilities[5] illustrates the importance of unpaid labor in terms of the everyday experiences of patients. Institutionalized before the age of four, Thomas spent 45 years in Rome State School in New York. He would wake every morning at 5:30AM and would then wake the “working boys.”[6] The use of “working boys” and “working girls” was common practice within the institution whereby higher functioning inmates would provide unpaid care to inmates with higher needs.[7] In addition to serving as a cost saving measure, this practice enabled institutions to efficiently deal with growing populations.[8] According to Thomas, inmates would assist in feeding other inmates, sometimes being responsible for making sure as many as three to four inmates got enough to eat, and would also help with cleanup after meals and other jobs including bathing inmates, laundry services, cleaning duties, and supervising other inmates.[9] Historians have noted that in the Rome State School, chores like making the beds, mopping, and providing attendant care to other inmates were referred to as “domestic training.”[10] In addition to these tasks, agriculture programs, where many inmates labored, provided the produce that fed those within the institution.[11]

     This unpaid labor by inmates meant that the line between paid and unpaid work within the institution was often fuzzy as best, with inmates sometimes performing the very same tasks as paid attendants. As James W. Trent’s work illustrates, one inmate within an Illinois asylum labored for eight years, only to be hired back as a paid attendant after he left the institution.[12] Another inmate, who had been assigned to the laundry, in fact carried out tasks that were indistinguishable for the non-disabled paid staff; while he lost his arm in 1907 because of a workplace incident, nothing materialized from the subsequent investigation, as lawmakers were aware that this kind of labor kept down institutional costs.[13] As one historian has noted, patient labor had direct impacts on the internal economy of the site as it reduced direct costs associated with paid care and produced outputs needed to maintain daily running of the site.[14] There is also evidence to suggest “good working patients” were transferred between various institutions as they were in fact viewed as valuable resources for site administrators.[15]

     Within the framework of this unpaid labor, it seems it was also common practice for site administrators to categorize inmates by perceived ability and IQ and tailor work assignments. For example, at the Rome Asylum, there was even a nursing program for “higher grades” that led to employment for graduates in their own institution and other facilities.[16] More telling is that when Martin Barr published Mental Defectives in 1904, he thanked three “boys” for their aid in preparing the book; these “boys,” it seems, had taken pictures for the book, provided translation, and typed the entire manuscript.[17]

     The often-indistinguishable nature of inmate labor from the labor of paid staff, coupled with the necessity of this labor for the effective and efficient functioning of the institution, speaks to the reality that these labor contributions were seen as more than education and training, even to site administrators, and sheds light on the exploitive nature of inmate labor embedded within early forms of disability services.

     Although there were shifts over time with respect to how inmate labor was framed, it seems this labor remained a central function over the life course of the institution. In their brief analysis of the world of work within the institution, Kelley Johnson and Rannveig Traustadottir note that while early on work was necessary and tied to the running of the institution (laundry services, agriculture etc.), later shifts saw the role of work framed as a therapeutic activity to keep inmates occupied.[18] They note that in the final years of institutionalization,[19] the emergence of “workshops,” with some even operating outside of the institution, became prevalent as there was the belief that inmates needed to learn an occupation, and that work and home life should be physically separated.[20] These shifts in work assignment and the reframing of this labor speak to evolving policy discourses that sought to justify the unpaid labor of persons with intellectual disabilities so as to present this work as beneficial to the individual rather than a form of unpaid or exploitive work.

Sheltered Workshops: unpaid labor within the context of community

While there are important spaces within the community in which persons with intellectual disabilities labor without pay, the sheltered workshop illustrates an important site of this labor and speaks directly to a continuation, within the context of community, of the kinds of exploitive labor that were once central to the functioning of the institution. Even under the guise of inclusion and their physical location within a community setting, sheltered workshops continue to serve as an important reminder of the unpaid, and largely unrecognized, contributions of persons with intellectual disabilities. This labor also reminds us of the ways in which some disability services still rely on the labor and marginal status of persons with intellectual disabilities in order to function efficiently and effectively.

     An apparent holdout from the “therapeutic” work activities that were once based within the institution, sheltered workshops continue to ensure that many persons with intellectual disabilities labor within the “community” for little to no pay. In these segregated and non-competitive work sites participants earn significantly less than stipulated minimum wages; their pay is often classified as a “gratuity”; and workers are likely to be classified as beneficiaries, trainees, or clients rather than employees.[21] Justified through arguments around social integration, occupational integration, and rehabilitation,[22] these work sites exist to support and prepare individuals to enter or re-enter the labor force. Sheltered workshops “service” individuals who have been deemed unemployable,[23] with persons with intellectual disabilities remaining heavily represented in sheltered workshops and other segregated employment programs.[24] Within these workshops there is a clear emphasis on tedious and labor-intensive tasks that would be tied to low-wage and low-status positions within the competitive labor process (i.e. collating material, sorting, repetitive and monotonous tasks like stuffing envelopes etc.).

     Despite the continued justifications for these sites by those agencies that provide these kinds of “services,” a recent report by the National Disability Rights Network (NDRN)[25] outlines the many ways these sites continue to fail persons with intellectual disabilities. Included in their critique of sheltered workshops are the following realities: this labor contradicts existing disability policy, including protection under the Americans with Disabilities Act (ADA); these sites reinforce the segregation of persons with intellectual disabilities in much the same way institutions once did; even while their employers experience the benefits of this labor, participants receive below the minimum wage, which reinforces poverty and excludes workers from the kinds of benefits and protections non-disabled workers receive; because sheltered workshops reinforce skills that are not transferable, this “training” does not lead to better or more equitable job opportunities for persons with intellectual disabilities.[26] Furthermore, because of sub-standard wages, sizable subsidies, and their placement outside of the mainstream labor market, agencies that operate sheltered workshops have not been forced to evolve, innovate, or adapt as other businesses have.[27] These realities have meant that rather than help prepare persons with intellectual disabilities for greater and more equitable employment opportunities, many persons with intellectual disabilities instead remain segregated within a framework of service delivery where their labor is continually exploited.

     Despite evidence that these sites are not in the best interest of persons with intellectual disabilities, the value of these sites, as a part of the “disability business” is clear. The practice of sheltered workshops enables some of these programs to operate both as a human service agency and as a business.[28] With respect to their business function, sheltered workshops generate their revenue through sales and provide wages to their supervisory (and non-disabled) staff.[29] Thus, the “business” side of sheltered workshops does at times outweigh the employment interests of the clientele, and much in the same way productive inmates were seen as valuable assets to the institution, managers of sheltered workshops often retain workers who are productive rather than helping to facilitate regular employment for these individuals.[30] Indeed, according to Mark Hyde, managers of sheltered workshops are often “reluctant to lose their ‘best’ workers.”[31] This conflict appears since it is integral to their survival that a sheltered workshop gains contracts and raises capital.[32] This reality creates a clear conflict between what is in the best interest of persons with intellectual disabilities who receive disability services through these sites and what is necessary for the successful administration of a site, which relies heavily on securing and successfully delivering business contracts to clients who operate within the competitive labor market.

     While these contracts are often framed as a form of corporate goodwill (i.e. private businesses providing meaningful tasks to persons with intellectual disabilities through their “support” of programs for persons with intellectual disabilities), these contractors take advantage of the cheap labor pools provided by sheltered workshops, and thus exploit the social and economic vulnerability of those with intellectual disabilities.[33] In one comparison between sheltered work and open employment, the researchers noted that workshops have evolved to “essentially [provide] a cheap and captive pool of on-call [labor] that enables other businesses to survive and even prosper at the expense of employees with disabilities.”[34] While individuals within sheltered workshops may not themselves be counted as part of the competitive labor process, their labor and the goods and services they produce do contribute to the mainstream labor process in very tangible ways. Contractors who use these sites avoid having these tasks carried out in-house by employees who would receive the minimum wage and other related benefits of formal employment. Therefore, sheltered workshops have created a kind of parallel and unrecognized labor process where workers with intellectual disabilities remain the only party involved in the labor process not receiving tangible or equitable benefits from their labor. Disability agencies that operate sheltered workshops are able to subsidize operating and staffing costs through contracts while at the same time promoting a “training” component for their “clients.” Businesses that outsource labor to sheltered workshops are able to use these sites to tap into a cheap and captive labor pool that exists beyond labor laws, minimum wage, benefits, or unions. At the same time, these businesses are able to reinforce a positive public perception by maintaining that outsourcing labor to sheltered workshops is evidence that they support employment initiatives for persons with intellectual disabilities.

Towards Real Work and Real Opportunities for Persons with Intellectual Disabilities

Deinstitutionalization and the move towards community inclusion have not led to the inclusion of persons with intellectual disabilities in mainstream employment opportunities. Scanning the history of disability services for persons with intellectual disabilities illustrates that persons with intellectual disabilities have historically made significant contributions through their labor, even though this labor has remained largely invisible within the framework of disability services. Yet, while these bodies may not be counted among the competitive labor processes, it is clear that this labor has often been an integral part of disability services.

     Much of the research and advocacy that is critical of sheltered employment, and other therapeutic and rehabilitative programs that deny workers with intellectual disabilities from receiving at least the minimum wage, does provide alternatives to these kinds of exploitive arrangements. For example, many have advocated for supportive employment, which by definition provides individualized support in order to gain and maintain paid, socially integrated, and competitive employment.[35] Supportive employment offers individuals with intellectual disabilities more equitable and inclusive employment opportunities, which research has overwhelmingly illustrated is the clear choice for persons with intellectual disabilities. In one study of the job satisfaction for persons with disabilities in supported employment, done with individuals who had been involved in both sheltered and supported employment, findings indicated that of those previously placed in workshops, 92.8 percent stated they preferred their supported positions to workshops.[36] In yet another study to examine perceived differences in quality of life between individuals with disabilities in workshops and individuals with disabilities in supported employment, it was generally found that there was a positive relationship between supported employment and perceived quality of life as individuals in supported employment scored higher in areas such as self-esteem, number of leisure activities undertaken, use of leisure time, mobility, and job skill perceptions.[37] Not only are individuals more positive about their experiences within supported employment, but research indicates supported employment is a more effective tool in job preparation than sheltered employment, evidenced by results that indicate individuals assigned to supported employment do significantly better in competitive employment than those from sheltered workshops.[38]

     Outside of questions around the rights of persons with intellectual disabilities to be protected from exploitive labor practices, these facts call into question the relevance of sheltered workshops with respect to their usefulness in training or rehabilitation. Given the evidence that supported employment is more equitable and beneficial to persons with intellectual disabilities, it is clear that there are alternatives to sheltered work which are more in line with the kinds of inclusive policies disability services should, in theory, actively promote. The task at hand is for individuals and advocates to insist that the primary goal of disability services is to serve the needs of persons with disabilities rather than the needs of outside contractors or program administrators. Indeed, it is unacceptable that disability services exist in which nondisabled parties are profiting at the expense of persons with intellectual disabilities.