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“The Neoliberal Assault on Disability Rights” — 10/4/2012, NYC
Video of 10/4 NYC Forum “The Neoliberal Assault on Disability Rights."
(Thanks to Beth Haller and Mark Schwartz for producing the video)
Articles based on the talks at the October 4 forum.
Nadina LaSpina
Paula Wolff
Ravi Malhotra
Jihan Abbas
INTRODUCTORY NOTE:
The October 4 2012 public forum was inspired by a special section in New Politics #53, which Ravi Malhotra edited. The section brought together four contributions: from Chris J. Ford, a New Zealander, on neoliberalism and disability rights,(1) Anne Finger on Antonio Gramsci,(2) Jihan Abbas, a Canadian, on intellectual disability and labor who is here with us today in Manhattan(3) and Rachel Garaghty on cuts to attendant services in Minnesota. (4) Malhotra and Abbas also participated in the forum.
1. Chris J. Ford, “Disability Politics in a Time of Capitalist Crisis: Could History Repeat Itself?”, (2012) 14:1 New Politics, available online at http://www.newpol.org/node/638 (last accessed October 11, 2012).
The articles below are not in the same order that the talks were presented.
Joining Forces to be Stronger
By Nadina LaSpina
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| Nadina LaSpina under arrest. Photo by Damien Crisp. |
When, shortly after the occupation of Zuccotti Park (Sep. 17, 2011), I started organizing disabled people to join in the new Occupy Wall Street movement, which seemed to be growing at the speed of light, I was criticized by leaders in the disability rights movement, including my good friend Bob Kafka, a national leader of ADAPT.
ADAPT is a grassroots organization of people with disabilities. Founded in 1983, ADAPT fought first for access to public transportation. At the time ADAPT stood for “American Disabled for Accessible Public Transit.” After passage of the Americans with Disabilities Act, the focus shifted to freeing disabled people from institutions and making it possible for those with even the most significant disabilities to live in their own homes in the community, with all the necessary services and supports. ADAPT, then, came to stand for “American Disabled for Attendant Programs Today.” Currently, ADAPT simply stands for ADAPT, it’s no longer an acronym.
The services and supports for which ADAPT has been fighting are or would be funded by Medicaid, the health care program for the poor. Since, outside of self-pay or costly private insurance, only Medicaid covers long term care, disabled people are often forced into poverty and forced to stay poor. Thus, ADAPT is fighting not for the Larry Flints and Christopher Reeves, but for the neediest and the poorest.
ADAPT makes very effective use of civil disobedience. At national actions, 100 to 200 people, most if not all disabled, get arrested. Getting arrested is proof of our commitment and is an empowering act for those who have been powerless. ADAPT activists are very proud when they get arrested, though it's always an ordeal, especially for those with significant disabilities. I've been arrested with ADAPT more times than I can remember.
Since ADAPT is known as the radical arm of the disability rights movement, I didn’t expect an ADAPT leader to disapprove of our involvement in Occupy. Yet, Bob Kafka wrote: “At a time when our people across the country are being threatened with cuts to basic services, States are slashing Medicaid budgets, workers with disabilities are being targeted [and laid off], sheltered employment pays sub-minimum wages, we need to use our scarce organizing energies and resources carefully, and not be dazzled by a movement that hardly recognizes our issues.” And he added: “Personally I'm tired of educating ‘progressives’ on our issues 38 years after 504 [the Section of the 1973 Rehabilitation Act prohibiting discrimination on the basis of disability in all programs receiving federal funding] and 21 years after the ADA [Americans with Disabilities Act].”
Bob's message exemplifies a widely held attitude in the disability rights movement, that of seeing our issues as ours and ours alone.
All of us who fight for social justice know very well that it's always the poorest and the neediest who pay for the sins of the rich. In times of plenty, poor people are thrown some crumbs. And those crumbs often are enough to pacify us and render us passive. In times of economic crisis, of course, poor people are the ones who are made to bear the heaviest burden.
Because we have always had the highest unemployment rates, even in times of economic boom, and because so many of our people have always depended on social programs, there is no question that the disability community was hit as hard as could be during the latest economic crisis. A crisis thatwas caused by Wall Street, by the big banks, by our government's commitment to the “free market,” and the idea that an unregulated market is the best way to increase economic growth, that no matter how much social damage it may cause, it will ultimately benefit everyone. That commitment was unshaken by the economic crisis. In fact, what was the remedy? The big banks that caused the crisis got bailed out. “Banks got bailed out, we got sold out.”
Though the disability community was hit very hard, others suffered as well. Nondisabled people were also hurt by those Medicaid budget cuts, as well as by unemployment, by cuts to public school budgets, to senior programs, to homeless assistance, to all social programs.
Why was Bob Kafka telling me to focus on “our” issues? Why was he accusing me of spreading myself thin, when all I was doing was joining forces in order to be stronger? Of course, I didn't follow Bob's advice and went on to start the Disability Caucus of Occupy Wall Street. On the West Coast, in Chicago, and in other cities disabled people were also organizing and joining the Occupy movement.
To try to explain the puzzling attitude of many disability rights activists, I’d like to take a closer look at the relationship our movement has had through the years with other movements fighting for social justice and in general with the “left.”
As an aside, I must confess that, being born and raised in Italy, I never thought there was much of a “left” in the United States. But I am now starting to feel more hopeful.
The disability rights movement was born out of other movements, in a time of great uprising - a time very similar to our own. We have always followed the example of other movements, certainly of the civil rights movement. For 40 years we have demanded our “civil rights.” From the very start we called ourselves “a minority.” In fact, in the US, the “minority model” is probably more recognized and better understood than the “social model.”
Disabled In Action was founded (in 1970) by Judy Heumann and others, who all had strong connections with progressive, “leftist” groups. In subsequent years, we would bring the DIA banner to every anti-war rally (too many of those to count), every women's rights’ march, anti-nuke protest, environmental demonstration, and every gay pride parade.
On the west coast, the affiliation of the budding disability movement with the left was just as strong. When, in 1977, the San Francisco disability rights activists sat-in for 25 days in the Health, Education and Welfare offices in order to get the regulations to Section 504 of the Rehab Act signed, they had the full support of the very progressive East Bay community. The Black Panthers brought them food, and the Butterfly Brigade (a gay group) provided them with walkie-talkies. The sit-in started what at the time we thought would be a tradition of solidarity between disability rights and other movements also fighting against oppression.
Yet, through the years, while individual disability rights activists have aligned themselves with various other social justice groups, on the whole, the disability rights movement has insulated itself from other movements. Those national organizations that supposedly represent us have in general put their trust in the liberal democrats, as being better than the republicans.
Why has this happened? If you ask around what you'll hear is: “They don't want us.” And, indeed, leftist groups are notorious for holding events and meetings without giving any thought to access – wheelchair accessibility, materials in alternate format, sign language interpreters. What you may also hear is: “The left doesn't get it.”
In October of 1986, ADAPT was fighting for wheelchair lifts on buses, and was in Detroit to hassle the American Public Transit Association, which was holding its convention there. Since Rosa Parks lived in Detroit, ADAPT invited her to attend their press conference and lead their march. In the fight to get on the bus, ADAPT activists had been using Rosa Parks as their icon -- often appearing at protests with name tags reading "My name is Rosa Parks" - trying to make the public connect our movement with the civil rights movement. An often-quoted sound bite from ADAPT in those days was: "A civil rights movement was born when people refused to ride at the back of the bus. We can't even get on the bus."
Rosa Parks failed to appear at the ADAPT's press conference and march. Instead, what ADAPT got was a letter from her. She cited as her reason for refusing the invitation "the traumatic manner in which you [ADAPT] choose to dramatize disabled Americans' lack of access to public transit." She said she didn't want to "embarrass the city's guests and cripple the city's present transportation system."
It was a heavy blow. I don't want to elaborate. We realized - and this would be confirmed repeatedly in the future - that while we tried to show the similarity of our movement to other social justice movements, those other movements were not so interested in our commonalities. Even when “our issues” were the same as “their issues,” they preferred to see them as “special.” And they saw us -- disabled activists -- as “special,” and “inspirational;” they kindly offered support but not true solidarity which only comes when you can “identify” with each other.
The most respected community organizers and activists treated us the same way as everyone else did. The wall of “ableism” stood between us. Ableism is the belief that an able body is the “norm” in society, and that people who have disabilities must strive to get as close as they can to that norm – something we cannot always do nor do we necessarily want to do. It’s the belief that disability is, inherently, a "bad" thing, a tragedy, rather than a simple consequence of being human and another example of human diversity, akin to race, ethnicity, and sexual orientation. Ableism is prejudice and we encounter it every day and we fight against it every day.
I must say, that in times of economic crisis, we have often managed to join forces with others fighting oppression. Certainly, Disabled In Action always has. I remember us joining the Same Boat Coalition in the early 90s. In 1993, when we organized the Disability Independence Day March, an event that drew close to 3000 people, we managed to bring together not only all the different segments of our community – people with all types of disabilities – but we had marching with us labor representatives and activists from different social justice groups.
When the occupation of Zuccotti Park began, my life partner and I, as well as some of our disabled friends, eagerly headed downtown. Was this the revolution we had been waiting for all our lives? Especially at first, the reception we got from the many people congregating around the park, whether they were organizers, “leftists” or simply curious visitors, was the same patronizing one we always get – the usual “pat on the head” and the usual comments: “How inspirational you are for coming here! How hard it must be to get here in your condition!”
Yet, when we ventured into the quickly growing encampment, we were “welcomed” by the occupiers. Of course, they were not immediately aware of our various needs for access. But I remember how readily and enthusiastically they moved cartons full of clothes and folding tables to make room for our wheelchairs, how tolerant and understanding they were when we rudely awakened them by accidentally hitting sleeping bags with our chairs, how joyfully they shared food with us. As we sat amidst the jumble of paraphernalia and listened to mic checks, we felt not only welcomed but “embraced.” Literally, hugs were freely and generously distributed.
We realized soon enough that many of the people camping in Zuccotti Park had experienced real oppression, and also that many of them were “disabled.” Some, whose disabilities were hidden, chose to “come out,” reveal their disabilities to us, and ask for advice in dealing with a hostile system. We felt not only wanted but needed.
So, though I never spent a night at Zuccotti Park, I was at home there.
Then on Nov. 15th the park was raided, what had been lovingly built was destroyed, the people were driven away, pepper sprayed, beaten, arrested.
Two days later, I was arrested in the attempt by Occupy Wall Street to block the Stock Exchange. Following my arrest, Disabled In Action and Krips Occupy Wall Street, who had been regularly lining up on the Broadway sidewalk in front of Zuccotti Park with protest signs, decided to formalize our presence in the Occupy movement. We became the “Disability Caucus of Occupy Wall Street.”
We have taken part in many OWS events and actions, and have organized our own. On Aug. 8, we protested in front of Gracie Mansion in opposition to the mayor’s 1% policies which marginalize New Yorkers of all backgrounds. Having shown nothing but contempt for the disability community, stomped on our rights and used our law against us in court, he was throwing a party for the ADA, trying “to buy us off with a hamburger and a pat on the head.” There were eight arrests. We had another four arrests on September 17, when on the anniversary of the first occupation, wheelchair users blocked Broadway in front of Zuccotti Park. The Disability Caucus has earned the respect of the whole Occupy movement in NYC.
A great deal has changed since the days of the original occupation. The media reports that the movement has dwindled. In a way that's true, since Occupy Wall Street as we knew it has fewer people. What we have today is a loose conglomeration of different groups working on different issues all using the language and ideology of Occupy; the latest initiative is Occupy Sandy Relief, which impressively sprang into action a few weeks after our October 4th forum. Some groups were in existence long before OWS, some are old left, others are new. There are protests every single day, sometimes two or three a day. And I've seen many of the same faces at different protests. This tells me the Occupy movement has evolved. It has brought various groups fighting for social justice together. I'm proud to say that we are there, too, and our presence is felt. Had Occupy allowed itself to be pressured limiting itself to one or two specific demands, this coming together of diverse groups would not be happening.
What Occupy has also done is embolden all of us. You will hear previously timid people say words out loud with pride. Words like “revolution.” You'll hear “I'm a socialist,” a democratic socialist or whatever kind of socialist, or a communist or an anarchist.
This is the time for the disability movement to be bold. For decades, the strategy of the power elite has been to throw us those crumbs and then threaten to take them away. They keep us fighting to hold on to those crumbs, so we do not demand what should be rightfully ours.
ADAPT has been fighting for years to make a small change in the Medicaid program: eliminate the institutional bias which mandates states to provide services in institutions and not in one’s home. ADAPT's work is extremely important. Our people die of neglect in nursing homes, they serve life sentences for the crime of having a disability.
It is imperative that we “free our people.” But why have we never questioned the existence of a separate program for the poor? Medicaid is inherently discriminatory. It is medical apartheid. In communities of people of color, the outcry against disparities in health care is getting louder. Statistically, people with cancer who rely on Medicaid are almost as likely to die as the uninsured. Yet, the disability community puts all its energy into preserving Medicaid as is, for fear of losing Medicaid funded long term care.
Why hasn’t the disability movement joined the movement for a national health care program? We need a strong health care program that includes long term care, so that people don't have to impoverish themselves, and be forced to stay poor in order to get services that should be ours by right.
That's just one example. It is time we move “beyond ramps” - that's the title of a book my friend Marta Russell wrote back in '97. It is even time to move beyond fighting for equality. And fight to change the system that creates and fosters inequality.
My ADAPT t-shirt says “Free Our people.” But I know “our people” will not truly be free unless we all join together and fight for all oppressed people to be free.
Nadina LaSpina is an activist for social justice and in particular for disability rights. She has been arrested countless times for civil disobedience and is an organizer for American Disabled for Attendant Programs Today (ADAPT), Not Dead Yet and the Disability Caucus of Occupy Wall Street.
Beyond the Americans with Disabilities Act
By Paula Wolff
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| Paula Wolff. |
Hi. I'm Paula Wolff. In the Summer 2012 issue of New Politics Betty Reid Mandell has an article called "Means Testing Shredding the Safety Net.” I wrote an article with a similar title called "Welfare Reform, Shredding the Safety Net" which appeared in ABLE News shortly after July 26,1996 when, under the guise of national welfare reform, immigrant workers who were ill or disabled or became ill or disabled after working here in the United States at some of the poorest paid jobs with some of the worst working conditions trying to support themselves and their families, could no longer qualify for income support and health insurance even if they met the incredibly restrictive income levels required. This was a disgrace! But the federal government did nothing and a major advocacy agency for the elderly, AARP, also did nothing. As a civil and disability rights activist and social worker I found this a disgrace!
I was asked to speak tonight about the disability rights movement, and I will try to do so. Like any movement, we've had some stars over the past 40 or so years. But the disability rights movement didn't start in a vacuum. It started as a result of other civil rights struggles and what we learned from them. We witnessed the civil rights struggles of Black people in the south to integrate schools and public facilities like restaurants, and to sit anywhere they choose on a public bus. In fact, the disability rights movement fought for many of the same things: the right to have access to public facilities like restaurants, schools, and to public transportation when we fought for the Rehabilitation Act of 1973, which banned discrimination against persons with disabilities in places that receive federal funds. And there were 28 days of sit-ins in California for this. We fought to have this right expanded and not limited to places receiving federal funds and it was when we fought for and got with the Americans with Disabilities Act (ADA) signed into law on July 26 of 1990.
Although the passage of the ADA was a huge victory, and many people think of it as a kind of Declaration of Independence for Persons with Disabilities this is actually not the case. Although it is an important civil rights law trying to end or at least diminish discrimination faced by persons with all types of disabilities and those perceived as having a disability or a record of such an impairment, the ADA falls extremely short of reaching its intended goal. Why? For one thing, it is a law without teeth and is only enforced if those who feel their rights have been violated under this law choose to sue. It is also an unfunded mandate. Also, since the ADA passed, there have been many attempts to weaken it. In addition, our rights, such as the right of a person who uses a wheelchair to enter an older building, are dependent upon the cost of making the entrance accessible and whether the building with access issues requests a waiver due to financial hardship. So, our rights to access, to accommodation in the workplace, etc. are not guaranteed as civil and human rights even with the Americans with Disabilities Act. They are still dependent upon cost and the "good will" of the particular program, building, or workplace. That is not equality!
We've also learned from the struggles of the women's movement and by the struggles of gay, lesbian and transgendered people, who share many of the issues we still fight for -- the right to work, the right to marry (since the need to qualify for government health programs forces many persons with disabilities to remain officially single, unable to marry out life partners), the right to housing, and the right to equality in healthcare access and education, and to an end to discrimination.
I've been involved in civil and disability rights for about 35 years and presently serve as president of Disabled in Action, a civil rights group for persons with disabilities and others who share our goals. DIA was started about 40 years ago by Judy Heuman. Ms. Heuman was a wheelchair user who had completed teacher training and wanted to get a license to teach in the New York City schools. Although she had completed all the requirements, at that time a person with a disability had to go for a "Special Competency Test." Basically they placed you in a school and asked you to do whatever would be difficult because of your disability.
I'm happy to say that I was the last person with a disability going for a license to teach in the New York City schools who had to take that "Special Test." I was already working as a Special Education Teacher in a private school in New Jersey, and, no, that principal writing a letter that I was doing really good work and managing all teaching duties was Not good enough. As a teacher who was legally blind (I was not yet in the wheelchair) they asked me to lead all the students in the school in an assembly, describe what was on the walls in a large room (I had asked one of the teachers what was on the walls before they came), and when they handed me a newspaper and told me to read it I read them a headline. I showed them large print recordkeeping charts and they watched me work with students. I got the teaching licenses. That was back in 1984.
There have certainly been some changes in the past 35 years. We have civil rights laws. New construction is usually required to be accessible. We fought for and now have lifts on the city buses (myself and many other wheelchair users threw ourselves onto the lifts hundreds of times waiting for a bus) and a limited number of subway stations (yes, I know the gaps are a problem.) We will soon see accessible long distance buses. We often see wheelchair access seating at public events, and assistive listening devices at many public places such as movie theaters.
Do we have an end to employment discrimination? With an unemployment rate of around 70%, of course not. Do we have equality of access to education or healthcare? No again. Do we have to fight to maintain the gains we've made, and to work for more? Of course! Occupy gives those of us in the disability community a unique opportunity to join coalitions fighting for social justice. We've been able to help Occupiers see that as victims of oppression and poverty we are part of the 99%. Thank you.
Paula Wolff is President of Disabled in Action and active in Occupy Wall Street. She has participated in the disability rights movement for more than 35 years. She is a social worker and direct services supervisor at the Center for Independence of the Disabled, New York.
Theories of Disablement
By Ravi Malhotra
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| Ravi Malhotra. |
In the United States and in other OECD countries, the majority of disabled people live in poverty. Disabled people also tend to be outside the labor market, and have attained fewer educational credentials than their non-disabled counterparts.1 The social model of disability stands for the proposition that it is structural barriers that lie at the root of most of the problems faced by disabled people: a lack of wheelchair ramps, lack of accessible technology that would enable blind people and others such as those with learning disabilities to work efficiently, a lack of sign language interpretation that would enable communication, and a lack of appropriate attendant services that would provide assistance with activities of daily living such as bathing, dressing and toileting, inflexible work schedules and rules that make many jobs impossible for disabled people.
The focus of the social model is on removing barriers.2 It is embodied in the vibrant but largely ignored social movements from below, such as militants in ADAPT who fought first for accessible public transportation and more recently for effective attendant services. The social model is also embodied to some degree in legislation such as the Americans with Disabilities Act and its equivalents in many other countries which require a duty to accommodate disabled people up to the point of undue hardship. A powerful overview of these social movements is provided in the late Frieda Zames and Doris Zames Fleischer's excellent The Disability Rights Movement. The second edition of this book is available from Temple University Press.3
The social model sharply contrasts with the medical model, which focuses almost exclusively on ameliorating impairment through a cure, medical intervention, and raising money through degrading telethons, such as the notorious Jerry Lewis telethon, that have been repeatedly protested by many in the disability rights community.4 Early work such as Erving Goffman's Stigma: Notes on the Management of Spoiled Identity drew attention to the problems faced by disabled people in social interactions, famously observing "there is only one complete unblushing male in America, a young married, white, urban, northern, heterosexual Protestant father of college education, of good complexion, weight and height and a recent record in sports"5 even as Goffman wrongly assumed that disability inevitably spoils identity.6
The focus of my presentation will be on the impact of neoliberalism on disabled people. What do I mean by neoliberalism? The drastic reduction of welfare, the expansion of workfare, and changing the nature of work away from well-paying full-time -- or what some might call Fordist -- jobs to the flexible labor market where precarious jobs are much more common: part-time or temporary post-Fordist jobs, often without decent benefits.7 There is also the expansion of overtime work without overtime pay, which is oppressive to everyone, but may be particularly challenging for many disabled people. There has been a drastic paradigm shift to the notion that a person outside the labor market should accept any job regardless of working conditions, hours or salary.8
This marks a sharp departure from the Keynesian welfare state consensus which, for what the French called les trente annees glorieux—thirty glorious years after the end of the Second World War -- one saw full employment, strong unions and the widespread availability of full-time well paid jobs, for many even if not all.9 Even then, however, the majority of disabled people across the OECD countries already tended to be outside the labor market. And, as Chris J. Ford observed in his New Politics article on neoliberalism and disability rights, as the welfare state is slashed in Britain and other countries there has been an increase in disability harassment: disabled people are increasingly being blamed as malingerers.10 Ford eloquently describes how Peter Greener, a man with multiple sclerosis in Hebburn, was falsely the subject of abuse on a benefit hotline by a neighbour.
Across Europe, as the economic crisis deepens, these incidents are likely to become more severe.11 This does not mark a disappearance of the state as in some Randian fantasy; the state is very much with us, but is focused on a different set of priorities: not regulation of wealth redistribution as in Keynesian times of progressive taxation but reregulation of labor markets to maximize profitability. The state is to act as an enabler of the capitalist class by enforcing property and contract laws.12
So how did we get here, neoliberal America in 2012? The British scholar Colin Barnes and earlier the American academic Deborah Stone have observed that with industrialization and urbanization, one saw the conflation of work with paid employment. Whereas some disabled people were able to make contributions in feudal times when labor time and the pace of work were less relevant, with the rise of commodification of labor and factories, disabled people were classified into two categories: those who were able to work and those who were not.13 Those who were not, after the passage of the English Poor Laws including the amendments in 1834, increasingly were regarded as a burden on the economy, a perception that persists to this very day.14
This was by no means a stable category; who was classified as disabled varied depending on the state of the economy, the state of the labor movement and the state of the class struggle.15 The huge growth of heavy capital industries such as iron, steel and the railways in the late nineteenth century resulted in a much higher level of physical fitness and dexterity as a prerequisite for employment and a concomitant increase in the institutionalization of those now deemed unable to work.16
Eugenics, influenced by thinkers such as Galton, sought to classify disabled people and had systemic biases against disabled people of colour and gays and lesbians in particular.17 Many disabled people were placed in institutional settings where physical and sexual abuse, including sterilization abuse, was widespread.18 Hence the notorious US Supreme Court case, Buck v. Bell in which Justice Holmes notoriously remarked "three generations of imbeciles is enough," and found that the state of Virginia did not act improperly in sterilizing the purportedly "feebleminded" woman, Carrie Buck.19 Sterilization laws were on the books in many states, in two Canadian provinces, and beyond, leading to the disgraceful sterilization of many tens of thousands of people, disproportionately working class and racialized.20
Immigration policies typically excluded people with disabilities; in fact, the disabled are prohibited from immigrating to Canada to this very day.21 Yet the classification system which became commonplace in areas such as workers compensation schemes, was entirely arbitrary. As Deborah Stone recounts, "even a defender of the idea of objective measurement of impairment as Kessler stated: "To summarize, it is important to understand that the entire pension scheme and disability rating scheme are pure fiction if we feel that the rating table expresses in a scientific way the economic, or psychological or physical effects of these express in a scientific way the economic, or psychological or physical effects of these injuries."22
The 1960s sparked many social movements that challenged the status quo including the African American civil rights movements, movements for Latinos, women, gays and lesbians, the student movement and many others. It is not surprising, then, that disability rights found the 1960s to be a congenial time and that the Rolling Quads, a group of disabled college students, emerged in Berkeley to mobilize for rights and independent living through political activism,23 a movement that grew rapidly with the return of radicalized disabled veterans from Vietnam.24
The high point of the 1970s resurgence of disability liberation politics was the remarkable San Francisco occupation that occurred in conjunction with protests aimed at forcing the release of regulations pursuant to s. 504 of the Rehabilitation Act of 1973. The regulations were to outline how it was illegal for federal agencies, contractors, or public universities to discriminate on the basis of handicap. They had been delayed by previous administrations, but there had been an expectation that the incoming Carter Administration would fulfill its promise to issue the regulations. When it became obvious that the Democratic Party policy makers were stalling and wanted to substantially modify the regulations to permit continued segregation in education and other areas of public life, disability rights activists mobilized in nine cities across the United States. In Washington, 300 demonstrators occupied the offices of the Health, Education and Welfare (HEW) Secretary for some 28 hours despite the cutting of the office's telephone lines by authorities and the refusal to permit food to get through to the protestors. While most of the demonstrations ended fairly quickly, in San Francisco, the movement took on a truly extraordinary trajectory. There, disability rights activists occupied the HEW federal building for 25 days, culminating in total victory: the issuing of the regulations without any amendments.25
Shifting to the postfordist world of today, one pressing problem, as first Karen Soldatic and Helen Meekosha have cogently noted is the fact that the state often coopts radical social movements, including disability rights movements, through funding and "partnerships," where the radicalism is thereby defused.26 This highlights the importance of autonomous disability rights movements from below are not beholden to anyone except their own members. This is particularly important for racialized disabled people and disabled women who are much more likely to face labor market barriers.
A second problem is that "individual responsibility" has become the governing morality and this mantra blames those who are marginalized for their own poverty, even though their poverty is due to structural barriers in the labor market.27 Vocational training programs or volunteering as a way of making contacts put the onus on the disabled person; moreover, there is often no position available at the end of the training.28 Vocational training only makes sense in a context where employment opportunities are tangible. This is accompanied by the monitoring of disabled people by caseworkers authorized to sanction them, which can lead to people losing their benefits for minor and technical breaches of regulations.29 This issue received considerable coverage recently during the Paralympic Games in England, where a French multinational company called Atos, which was a sponsor of the Games, sparked protests because it was also shamefully administering "fitness to work" tests to disabled people receiving benefits. Atos had a100 million pounds a year contract to complete this task. This is at a time when some 500,000 disabled people in Britain are scheduled to have their disability benefits cut.30
A third issue is how does one effectively assure accommodations in a world where many individuals are in short term contracts, and employers in the service sector and elsewhere are increasingly focused on minute by minute profitability, and turnover is high -- with a large pool of replacement labor readily available.31 A short rest break that might have once been a feasible accommodation now becomes undue hardship. In the United States, the first 18 years of Title I of the Americans with Disabilities Act, which concerns employment, was marred by an unreasonably narrow definition of disability by the courts. This meant that millions of Americans who clearly had disabilities were not covered. This did not change until Congress amended the law in 2008 to provide a broader definition of disability.32
Technical doctrines such as the "mitigating measures" doctrine prevented the coverage of disabled people who took medications for high blood pressure, epilepsy, diabetes, or severe hearing loss. They were not necessarily regarded as disabled; they had to be evaluated for eligibility after they applied mitigating measures such as assistive devices or medication. Courts in the United States have found all kinds of people with disabilities to not qualify as disabled under this narrow jurisprudence, often ignoring the EEOC guidelines in their rulings.33 Even countries such as Canada, which have always had a broad definition of disability, have not seen a big jump in labor market participation by disabled people. The vast majority of ADA employment complaints prior to 2008 failed, giving ADA Title I plaintiffs one of the least successful records in the federal courts.34
This history points to real problems in relying exclusively on law as a tool for social transformation, which is the focus of some activists. Samuel Bagenstos, the former Principal Deputy Assistant Attorney General of the United States, has pointed out that the backers of the Americans with Disabilities Act employed a kind of individualist libertarian argument in favor of the ADA, thus encouraging Republican lawmakers to frame the issue of disability rights as one of removing people from the welfare rolls through employment: "In official reports, in congressional hearings, on the floor of Congress, and in the popular press, supporters of the proposed ADA argued that the statute was necessary to reduce the high societal cost of dependency: that people with disabilities were drawing public assistance instead of working, and that a regime of "reasonable accommodations" could move people with disabilities off of the public assistance rolls and into the workforce in a way that would ultimately save the nation money. This argument was asserted by individuals with disabilities who urged passage of the ADA, by the bill's major sponsors, and by President George H.W. Bush himself.
In short, the ADA was sold to a significant extent as a means of welfare reform."35 Samuel Bagenstos correctly suggests that this lies in the fact that the notion of Independent Living which has been one of the core concepts of the disability rights movement has a libertarian tinge. Instead, we need to challenge the notion of "independence," a motif that runs very deep in US history, to argue for a more balanced conception of interdependence.
So how do we draw a balance sheet for the ADA as a tool for social transformation? It is important for those of us on the left not to sneer too much. It is evident that a rights-based approach may be able to secure gains in physical access to services. The emergence of a vibrant disability pride or what some are increasingly referring to as disability culture, speaking of the experiences and barriers faced by disabled people and usually coated with a heavy dose of postmodern philosophy, may enrich the American social fabric.36 However, for leftists, it is clear that a disability rights movement that takes a class analysis seriously must grapple with the intense unemployment and poverty experienced by a majority of disabled people. A strong case can be made that this challenge ultimately strengthens the socialist case for a radical democratization of the economy.
The full inclusion of disabled people into society would shatter the link between self-worth and full-time employment that has been predominant in capitalist societies since the Industrial Revolution. It would also open the door to the possibility of coalition-building with others such as single mothers and welfare recipients who also are punished by the arbitrary value placed on working a standard job and might ultimately permit a greater understanding of how labor is commodified under capitalism; this understanding can strengthen working class consciousness and mobilization as a whole. Others, such as Sunny Taylor, author of "The Right Not to Work," in Monthly Review in 2004, have begun to question the politics of valuing people by their work.37
Nevertheless, leftists who focus exclusively on transformation in the economic sphere would do well to remember that wheelchair access to government offices, public schools, universities and private businesses is clearly far superior in the United States than in Canada, many social democratic European countries, or Australia, despite the broadly retrograde character of U.S. economic life. Still, one can hope for far more and for that one has to look at building social movements and grassroots organizing.
On a closing note, I want to mention that one often unexplored area is the vast number of leftists who have had disabilities, but whose disabilities have been almost totally ignored. An egregious example is the Italian Marxist Antonio Gramsci, whom Anne Finger discusses in the New Politics symposium;38 it includes the anti-war American socialist Randoph Bourne of the early 20th century39 as well as E.T. Kingsley (1856-1929), a double amputee who ran twice for the House of Representatives for the DeLeonist Socialist Labor Party in California before moving permanently to Canada in 1902, where he went on to edit the Western Clarion and became a leader of the Socialist Party of Canada. I am writing, with Benjamin Isitt, a biography of Kingsley under contract for University of British Columbia Press. Attention to disabled leftists of the past can deepen our understanding of disability rights struggles today.
Ravi Malhotra is a disability rights advocate, a sponsor of New Politics, and Associate Professor at the Faculty of Law, Common Law Section, at the University of Ottawa in Ottawa, Canada. He has published widely on disability rights and serves on the human rights committee of the Council of Canadians with Disabilities.
(Endnotes)
1 See Armantine M. Smith, "Persons with Disabilities as a Social and Economic Underclass" (2002-2003) 12 Kansas Journal of Law and Public Policy 13 at 21 for a summary of the data in the 2000 NOD/Harris Survey and the 2000 CPS. More recent statistics paint a similar picture. See "Poverty in the United States: A Snapshot", available online at http://www.nclej.org/poverty-in-the-us.php, (accessed October 10, 2012).
2 For canonical accounts of the social model, see Michael Oliver, The Politics of Disablement (London: Macmillan, 1990) Colin Barnes, Mike Oliver & Len Barton, eds., Disability Studies Today (Cambridge: Polity Press, 2002); and Gary L. Albrecht, Katherine D. Seelman & Michael Bury, eds., Handbook of Disability Studies (Thousand Oaks, California: Sage, 2001).
3 Doris Z. Fleischer & Frieda Zames, The Disability Rights Movement: From Charity to Confrontation, 2nd ed. (Philadelphia: Temple University Press, 2011).
4 For a critique of telethons, see Paul K. Longmore,"Conspicuous Contribution and American Cultural Dilemmas: Telethon Rituals of Cleansing and Renewal" in David Mitchell & Sharon Snyder, eds., The Body and Physical Difference: Discourses of Disability (Ann Arbor: University of Michigan, 1997).
5 Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon & Schuster, 1963), 128.
6 See ibid., ch. 2. Disability theorists, in contrast, would see disability as having at least the potential to make a positive contribution to identity.
7 See Alan Roulstone, "Disabling Pasts, Enabling Futures? How Does the Changing Nature of Capitalism Impact on the Disabled Worker and Jobseeker?" (2002) 17 Disability & Society 627 at 629.
8 Karen Soldatic and Helen Meekosha, "Disability and Neoliberal State Formations" in Nick Watson, Alan Roulstone and Carol Thomas, eds., Routledge Handbook of Disability Studies (London: Routledge, 2012), 195 at 200.
9 For a good overview, see Luc Boltanski and Eve Chiapello, The New Spirit of Capitalism trans. Gregory Elliott (London: Verso, 2005).
10 See Ford, supra note 7.
11 Ibid.
12 Judy Fudge and Brenda Cossman, "Introduction: Privatization, Law and the Challenge to Feminism" in Brenda Cossman and Judy Fudge, eds., Privatization, Law and the Challenge to Feminism (Toronto: University of Toronto Press, 2002) 3 at 19
13 Colin Barnes, Disabled people in Britain and Discrimination: A Case for Anti-discrimination Legislation (London: Hurst & Co.) at 15; Deborah A. Stone, The Disabled State (Philadelphia: Temple University Press, 1984) at 24.
14 Soldatic and Meekosha, supra note 12 at 199.
15 Barnes, supra note 17 at 15.
16 Ibid. at 18.
17 For a good account, see Beth A. Ferri and David Connor, Reading Resistance: Discourses of Exclusion in Desegregation and Inclusion Debates (New York: Peter Lang, 2006).
18 Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Random House, 1993) at 237-39; Dick Sobsey, Violence and Abuse in the Lives of People with Disabilities: The End of Silence Acceptance? (Baltimore: Paul H. Brookes Publishing Co., 1994) at 94-96.
19 Buck v. Bell 274 U.S. 200 (1927).
20 For an American account, see Marta Russell, Beyond Ramps: Disability at the End of the Social Contract (Monroe, Maine: Common Courage Press, 1998) at 46-47, 61. For the Canadian policies on sterilization, see Timothy Caulfield and Gerald Robertson, "Eugenic Policies in Alberta: From the Systematic to the Systemic?" (1996) 35 Alberta Law Review 59; Dianne Pothier, "Appendix: Legal Developments in the Supreme Court of Canada Regarding Disability" in Dianne Pothier and Richard Devlin, eds., Critical Disability Theory: Essays in Philosophy, Politics, Policy and Law (Vancouver: University of British Columbia Press, 2006) 305 at 307.
21 See Fiona A. Miller, "Making Citizens, Banishing Immigrants: The Discipline of Deportation Investigations, 1908-1913" (2000) 7:1 Left History 62 at 67, 83
22 Stone, supra note 17 at 116.
23 James I. Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkeley: University of California Press, 1998), pp. 131-136.
24 Shapiro, supra note 22 at 57-58.
25 Ibid. at pp. 64-69.
26 Soldatic and Meekosha, supra note 12 at 197.
27 Ibid. at 198.
28 Alan Roulstone, "Disabled People, Work and Employment: A Global Perspective" in Watson, Roulstone, and Thomas, supra note 12, 211 at 213-14.
29 Soldatic and Meekosha, supra note 12 at 203.
30 Esther Addley, "Paralympic Sponsor Atos Hit by Protests" (August 31, 2012), The Guardian, available online at http://www.guardian.co.uk/society/2012/aug/31/paralympic-sponsor-atos-hit-protests (last accessed October 11, 2012); Patrick Butler, "Benefit Cuts: Atos in the Frame to Deliver New Disability Tests" (April 23, 2012), The Guardian, available online at http://www.guardian.co.uk/society/patrick-butler-cuts-blog/2012/apr/23/benfit-cuts-atos-in-frame-to-deliver-disability-tests (last accessed October 11, 2012).
31 Robert Wilton, "Working at the Margins: Disabled People and the Growth of Precarious Employment" in Pothier and Devlin, supra note 24, 129.
32 Jeannette Cox, "Crossroads and Signposts: The ADA Amendments Act of 2008" (2010) 85 Indiana Law Journal 187 at 199-202.
33 Ibid. at 200-02.
34 Ruth Colker, "The Americans with Disabilities Act: A Windfall for Defendants" (1999) 34 Harvard Civil Rights-Civil Liberties Law Review 99 at 99-100.
35 Samuel R. Bagenstos, "The Americans with Disabilities Act as Welfare Reform" (2003) 44 William and Mary Law Review 921 at 926-27.
36 See, e.g., Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press, 2010).
37 Sunny Taylor, "The Right Not to Work: Power and Disability" (2004) 55 Monthly Review 30 at 30-44.
38 Finger, supra note 8.
39 Christopher Phelps, "The Radicalism of Randolph Bourne" (2007) 21 Socialism & Democracy, available online at http://sdonline.org/43/the-radicalism-of-randolph-bourne/ (last accessed October 11, 2012).
The Unpaid Labor of Persons with Intellectual Disabilities
in Institutional and Community-based Disability Services
By Jihan Abbas
Introduction
 |
| Jihan Abbas. |
Drawing on the work of scholars, advocates, and historians, I wrote this article (based on my October 4 talk at the disability rights forum) to examine the unpaid labor of persons with intellectual disabilities in institutional and community settings. In general, my PhD research, and this piece, are aimed at contributing to the literature that examine intellectual disability and work. I am hopeful this will contribute to collective efforts to challenge the exploitation of persons with intellectual disabilities and make visible what has historically remained invisible — the tremendous capacity and contributions of persons with intellectual disabilities in the world of informal and unpaid labor.
The work experience of persons with intellectual disabilities remains overlooked in much of the literature. In part, this is because of an emphasis on paid work. As persons with intellectual disabilities have historically experienced low rates of employment, their place within labor studies and their contributions in the world of work are often overlooked. Furthermore, because of their absence from paid employment there is a misconception that persons with intellectual disabilities cannot or do not work. However, as I will illustrate, while this notion has been reinforced over time through exclusionary and exploitive social policies presented as rehabilitation and training, "work" is in fact central to the history of disability policy and programs for persons with intellectual disabilities. A closer examination of programs within institutions and the community reveal the legacy of unpaid, exploitive, and invisible labor that directly challenges these misconceptions.
While I speak about labor in institutional and community settings, I am doing so with the understanding that persons with intellectual disabilities remain institutionalized and incarcerated in some Canadian provinces and U.S. states. My goal in examining labor in these spaces is not to suggest that "deinstitutionalization" has been realized and that institutions are no more. Rather, I want to illustrate the legacy of economic exploitation, which has, and continues to thrive in both segregated and community settings, in order to illuminate the problematic nature of current disability policy where issues of "work" are concerned.
The Institution
Much of what I draw on is based on scholarly work and narratives that have emerged from the Rome State School, which was an institution located in Oneida County in central New York. Many of those incarcerated within these institutions were believed to pose a threat in large part because of their perceived "idleness." Yet, the literature and emerging narratives speak to a rhythm of institutional life that reflected anything but idleness. Indeed, within the institution, unpaid labor consisted of two important functions: education and training, both of which in fact served to alleviate administrative pressures.
By the 1920's most institutions had "prevocational" and "vocational" training for kindergarten-aged inmates whereby young children where encouraged to integrate tools into their play. 1 This mean that by the age of six, these young inmates would have been learning to hammer nails, wash rages, and punch holes in leather. 2
It is important to note the gendered nature of work and training within the institution. For example, male inmates were often tasked with more physical labor (agriculture, maintenance etc.) while female inmates tended to be assigned housekeeping and care related chores. Some patient narratives which have emerged reflect the use of "working boys" and "working girls," classifications which also reflect the role of perceived ability in work assignments.
Patients deemed as "higher-functioning" would provide care to those with greater needs.3 Working-aged inmates would assist in feeding other inmates (sometimes as many as three to four other inmates), cleanup after meals, bathing other inmates, laundry services, cleaning duties, and general supervision.4 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."5 In addition to these tasks, agriculture programs, where many inmates labored, provided produce that fed those within the institution.6
Inmate labor served a cost-saving function, and this unpaid labor enabled the institution to accommodate growing populations.7 The line between paid and unpaid work within the institution was often fuzzy at best. Indeed, it was not unusual for inmates to perform the very same tasks as paid attendants. For example, one inmate within an Illinois asylum who labored for eight years was hired back as a paid attendant after he left the institution.8 Another inmate, who had been assigned to the laundry, carried out tasks that were indistinguishable for the non-disabled paid staff. Although he lost his arm in 1907 because of a workplace incident, nothing materialized from the subsequent investigation as lawmakers appreciated the role of this labor in keeping down institutional costs.9
As one historian has noted, inmate labor had direct impact on the internal economy of institutions as it reduced direct costs associated with paid care.10 There is also evidence to suggest "good working patients" were transferred between various institutions as they were viewed as valuable resources to site administrators.11
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 these sites, reveals the exploitive nature of inmate labor embedded within early forms of disability services.
While there were some shifts in terms of the justification for this labor, the exploitation remained central. For example, early on this unpaid labor was unabashedly presented as integral to the economical running of the institution. Later shifts saw work framed as a therapeutic activity to keep inmates occupied.12 In the final years of some institutions, "workshops" emerged, with some even operating outside of the institution, as a belief emerged that inmates needed to learn an occupation, and that work and home life should be physically separated.13
The Community
While there are important spaces within the community in which persons with intellectual disabilities labor without pay, in this piece I will focus on sheltered workshops. This focus is important, as I believe the current economic climate is creating conditions in which this exploitation is being reframed not just through policy discourses, but also publicly as a form of corporate goodwill.
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 participants are likely to be classified as beneficiaries, trainees, or clients rather than as employees.14 These classification help workshops avoid existing labor laws.
In terms of policy rhetoric, workshops are often justified through arguments around social integration, occupational integration, and rehabilitation.15 While these programs theoretically exist to support and prepare individual to enter or re-enter the labor force, in reality they typically "service" individuals deemed unemployable,16 which leaves persons with intellectual disabilities heavily represented in workshops.17
Within the workshops there is a clear emphasis on tedious and labor-intensive tasks, which include shredding, collating, sorting, assembling, and repetitive and monotonous tasks like stuffing envelopes. The website of one of the workshops I researched actually advertises that persons with disabilities can reduce the employers' costs for time-consuming and tedious tasks. In those workshops included in my own research, government and corporate clients are heavily represented. Additionally, many of the tasks within workshops are actually quite intricate and reflect skilled labor that would otherwise demand higher pay (i.e. wood working, furniture building etc.).
A recent report by the National Disability Rights Network (NDRN) outlines the problematic nature of these sites, noting their violation of existing policies, including the Americans with Disabilities Act, their reinforcement of segregation, poverty that is tied to participants receiving below minimum wage, and an emphasis on non-transferable skills.18
By operating both as a human service agency and as a business,19 these sites avoid traditional labor costs because of their human service function, while at the same time fulfilling very real business purposes. This enables businesses that contract their services out to sheltered workshops to take advantage of their cheap labor, and thus exploit the social and economic vulnerability of those with intellectual disabilities.20
Conclusion
There is a wealth of research that illustrates how alternative employment models are better suited to helping individuals with intellectual disabilities find real and meaningful employment. Yet despite data that illustrate the benefits of open rather than sheltered employment, workshops remain positioned to succeed because of their access to a cheap and marginalized pool of labor. In today's economic climate, this gives clear incentives to maintaining these sites, which creates the urgent need for advocates to integrate the experience of persons with intellectual disabilities into mainstream equity and labor rights debates and movements.
Jihan Abbas is a Vanier Canada Graduate scholar and PhD candidate at Carleton University in Ottawa, Canada. Her research interests include disability and the labor market, social policy, and inclusion.
(Endnotes)
1. J.W. Trent, Inventing the Feeble Mind: A History of Mental Retardation in the United States. Berkeley: University of California Press, 1994.
2. Ibid., p. 109
3. K. Johnson & R. Traustadottir, Deinstitutionalization and People with Intellectual Disabilities: In and Out of Institutions, Part 1—Living Inside, London: Jessica Kingsley Publishers, 2005.
4. Ibid.
5. Douglass 1914 as cited in Trent 199, p. 109.
6. Trent.
7. Ibid.
8. Ibid.
9. Ibid.
10. G. Reaume, Remembrance of Patients Past, Oxford, 2000, Chapter 5 "Patients Labour," pp. 133-180.
11. Ibid.
12. Johnson &Traustadottir.
13 Ibid.
14. L. Visier, "Sheltered employment for persons with disabilities," International Labour Review, 137(3), 1998: 347-365.
15. Ibid.
16. G. Reaume, "No Profits, Just a Pittance: Work, Compensation, and People Defined as Mentally Disabled in Ontario, 1964-1990," in S. Noll & J. Trent, J. (eds.) Mental Retardation in America, New York: New York University Press, 2004, pp. 466- 493.
17. P. Thornton & N. Lunt, Employment Policies For Disabled People in Eighteen Countries: A Review, 1997.
18. National Disability Rights Network, "Segregated & Exploited: The failure of the Disability Services System to Provide Quality Work," January 2011.
19. G. Albrecht The Disability Business: Rehabilitation in America, London: Sage Publications, 1992.
20. Reaume (2004)