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Congress has Supported the FDA’s Right to #StopTheShock

By Dean Strauss / 2022-12-23
Posted in

The Autistic Self Advocacy Network welcomes the passing of the omnibus bill with a provision that gives the FDA the right to ban contingent


Autism Research and the IACC: Your voice matters!

By Meredith Bartley / 2022-10-06
Posted in

It is more important than ever to make sure autism research reflects what matters to all of us. Make your voice heard by submitting


Getting to the Roots: Why Does Subminimum Wage Persist?

By Andjela H. Kaur / 2022-10-06
Posted in

In 2018, the National Council on Disabilities reported that people with disabilities in the U.S. have decreased chances of finding work. In addition, the report found that disabled workers often work for subminimum wage, low wages, and under substandard employment contracts (i.e. in part-time jobs that offer no chance for advancement or benefits). While there has been some progress towards banning subminimum wage, as several states banned the use of subminimum wages for disabled workers and others are moving in that direction, the problem remains. Job seekers with disabilities continue to struggle to find work and disabled workers’ labor remains largely devalued in the U.S. labor market. This bothers and puzzles me. 

I first learned about subminimum wages as a grad student in rehabilitation counseling. The concept was strange to me as I immigrated to the US from the former Yugoslavia, which did not have such an arrangement. Both disabled, my father and I had been employed at competitive wages all of our lives; I couldn’t help but wonder how this option was even possible.

In a lively class discussion on the value of vocational rehabilitation, we debated the “need” for subminimum wage. Most students argued that people who couldn’t meet the productivity standards of the industry should not be paid the same as those who could. Sadly, only the instructor and I argued the opposite: all workers should be paid the same minimum, if not a living wage. Both sides presented very weak arguments based on purely articulated beliefs, void of any factual or historical evidence. 

I left the class that evening determined to get to the bottom of this problem. I wanted to answer the question: why is subminimum wage justifiable in the US? The search for answers to this and other questions related to employment of disabled workers has driven my academic career since. I found that a look at the historical roots of the ideology that employers, vocational rehabilitation experts, and policy makers have used to justify exploitation of disabled workers may explain why subminimum wages are still in place and what could be done to dismantle them.

The place of disabled workers in the U.S. labor market has been determined for centuries by the belief that people with disabilities should work for something other than wages. Throughout the history of disabled workers’ participation in the labor force, employers and vocational rehabilitation experts purported that what we primarily get in exchange for our labor power is solely the opportunity to work and a chance to pay back the cost of rehabilitation to rehabilitation experts and society.

The idea that disabled workers can and should be compensated in ways other than through fair remuneration originated in the early Industrial era. With the Industrial Revolution underway in 19th century U.S., the insistence that workers adapt their labor to the demands of industrialized production denied many disabled people a chance to work in factories. Machine-centered production lines required that a worker could maneuver their body according to the needs of the machinery.

Jobs were not given to those who could not meet the expectations of fast-paced manufacturing, long working hours, and the levels of physical and mental agility necessary to run a machine. “Feeble mindedness,” “deviancy,” “crippleness,” and similar labels operated interchangeably to mark those temporarily or permanently unemployed to justify their unemployment and resultant confinement to workhouses, prisons, and asylums.

At the same time that they claimed the unemployability of its inhabitants, superintendents of asylums used inmate labor to support their operation. During national work shortages, when their admissions would substantially increase, the institutions expanded to help store surplus labor.

During the time of widespread institutionalization in the 19th and early 20th centuries, inmates worked long hours under the auspices and supervision of institutions dedicated to providing them with vocational training and rehabilitation. Inmates farmed institutional lands, bent over sewing machines to produce home goods for sale, provided nursing care for their fellow inmates, and maintained the facilities that housed them. Sometimes they were “rented out” as farm hands or domestic servants.

The disabled, poor, and “deviant” were publicly regarded as eternally indebted to the private funders and the public authorities that supported the institutions. Those who operated the institutions considered the labor of inmates to be: 1) a product of the process of rehabilitation, 2) repayment of debt to the nation, and  3) a useful contribution to the institutions themselves.

In what we might call a mission statement of Pennsylvania’s Pennhurst State School, an asylum operating from 1908 to 1987, its superintendent wrote in 1926 that the aim of the institution was “to train each and every one of the patients so that they are more useful to themselves and those in charge of them, to eliminate social and other undesirable habits and replace these habits with habits of industry and habits that are socially acceptable.” The managers and funders of asylums often spoke of the therapeutic values that labor had on the inmates and patients. They regarded inmate labor as a path to rehabilitation of the unfortunate and the “deviant.” It also provided significant cost-saving measures for the funders.

Beginning in 1840, the cost of asylum operations shifted from local governments to state governments; in the 1970s, it transferred from the state to the federal government. The argument that rehabilitated labor leads to self-sufficiency was central to the requests for funds put forth by the superintendents to their private funders, local and state authorities, and later to the federal government.

But make no mistake: while they were claiming that the purpose of these businesses was training and rehabilitation, the superintendents had long known that these exploited workers did provide valuable labor. Isaac Newton Kerlin, superintendent of Elwyn Institute, clearly recognized that the asylums were employing disabled people. In 1888, he said that “the gardening, laundering, and cobbling of our feeble-minded employés [sic] find here an exchange which will never be criticized by outside ‘labor unions,’ nor reached by ‘labor legislation.’” Kerlin, thus, recognized both the value of disabled people’s labor for the institutions and the potential for exploitation of disabled workers for the benefits of an ableist society. 

In fact, early policies regulating the use of disabled labor—workmen’s compensation and subminimum wage provisions—exempted institutional labor. Organized labor increasingly disapproved of the enterprise, but never interfered in the business of institutionalized exploitation of disabled workers. The eight-hour day provisions limited exploitation of paid staff, which resulted in the decrease of community placements for disabled workers and an increase of their labor in the institutions. Kerlin had thus correctly predicted the course of history of disabled labor.

For decades, calculations of the value of disabled workers’ labor have not been based on the usual considerations of the financial profits that paid labor provides to employers and the needs of workers. Instead, disabled people have been paid based on the imaginary benefits that the opportunity to work might provide and the costs of their rehabilitation (which is mostly paid by public funds).

Proponents of institutional exploitation of disabled workers have not only introduced the idea that the labor power of disabled workers belongs, at least in part, to institutions, but they have also paved the way for legislation to apply this to non-institutionalized disabled workers as well. During the congressional hearings regarding the Fair Labor Standards Act of 1938 (which made subminimum wage legal),  the idea that there is such a category as  “substandard workers” was endorsed by then Labor Secretary Frances Perkins. She was an influential voice in the creation of the New Deal and the first woman to serve as a cabinet secretary.

Although the phrase was not included in the Act, the idea that some workers should be paid less than minimum wage was legislated. Section 14 of the law, which allowed for sub-wages based on disability, still remains a legal scheme for remuneration of disabled workers at wages below legal minimums.

Despite ongoing advocacy from global disability rights and justice movements, multiple lawsuits addressing the exploitation of disabled workers, and the enactment of WIOA eight years ago, the discriminatory practice remains.  As the fight continues, and yet another bill to abolish subminimum wage is before Congress, the time has come to eradicate centuries-long misconceptions about the value of disabled workers’ labor.

We must finally abandon old ideology that serves as the basis for undervaluing workers with disabilities. The harmful belief that we work for opportunities and paybacks must be eradicated. The opportunity to work alone does not put bread on the table. It is the wages that workers earn that pay the bills. Talking about the past gives us the fortitude to change the future. The roots of exploitative practice are deep and have spread too far for too long. Let’s dig them out!


Andjela H. Kaur (she/they) studies political economy of disability and labor history of disabled people. She is a disabled worker currently employed by Penn State as an assistant teaching professor. When not working, they enjoy nature walks with their human and animal friends. You can reach out to her via email here.

The post Getting to the Roots: Why Does Subminimum Wage Persist? appeared first on Rooted in Rights.


ASAN Comments on Section 1557

By Dean Strauss / 2022-10-04
Posted in

These comments are available as a PDF here.

October 3, 2022
Melanie Fontes Rainer
Office of Civil Rights
Department of Health and Human Services

Re: Notice of


In the Stairwell, We Will Die

By Denarii Grace / 2022-09-16
Posted in

During my sophomore year of college, I wrote my will. That year was filled with trauma. I’d noticed a constant ache in my lower back that soon trickled down my legs and into my feet. They started to look like mountains with peaked arches and small toe pebbles that tucked beneath their surface. I skipped many classes so that I could visit neurosurgeons who eventually diagnosed me with a rare, non-fatal neurological condition called Tethered Cord Syndrome.


When my boyfriend learned that I was drafting my will with a lawyer, he panicked, thinking that my disability was the threat. I told him, “I am not afraid that my body will kill me. I am afraid that I will die at the hands of my inaccessible school.”


This fear wasn’t rooted in some anxious fantasy, but in the harsh reality faced by all disabled students. Like many institutions, my art school did not have an accessible fire escape plan. When I asked how I was supposed to carry my service dog, manual wheelchair, and my weak, wobbly legs down the concrete steps, I was told to wait patiently and they would try not to forget me. So, as instructed, I waited and watched as the able-bodied students rushed past me to safety. I spent this time contemplating my own death and the death of the one disabled professor who sat in the stairwell with me.


No one ever came to get us.


Throughout the rest of the school year, this fear was affirmed as I was persistently met with physical, cultural, and social barriers. Sometimes my wheelchair and I would get stuck in the bathroom stall. I’d pray someone would stumble upon the scene to help while also hoping no one found me stuck with my pants down and ankles pinned between the toilet and my wheelchair.


After critiques, where we spent four hours at a time giving constructive criticism about each other’s art, the Disabled and Black students would silently shuffle into my dorm room. We’d independently critique each other’s artworks because our in-class discussions were led by a white, non-disabled faculty member who bluntly said that our artwork celebrating our cultures would not make any sense to people in what they called the “real world.” When the elevator broke down, I was forced to miss classes because the school neglected to put a backup plan in place despite my pleas. As I turned to wheel out of the school, the security guard shouted, “Why don’t you just get up and walk?”


Every student experiences emotional and physical tolls in college: student debt, overbooked schedules, and fast-approaching deadlines. But everyday stress is amplified for the Disabled student who, on top of all that, also experiences hostile inaccessibility, ableism, and a lack of representation. They are expected to ignore their bodies’ needs in order to fulfill the ableist demands of their institution.


Because inaccessibility hindered my daily life, I spent most of my free time begging the administration for equal access. I felt like I was going to war with an opponent who refused to fight fair. Administration made little effort to address the inaccessibility that surged through the walls of the institution, claiming to be restricted by the school’s historic building status or lack of funding.


This forced the responsibility of accessibility and change onto the shoulders of disabled students. There were good professors who would let me leave early when they saw my health declining and others who would remove the chair from the desk before I arrived so that my wheelchair could smoothly slide in. They made the school year bearable but to settle for bearable is no way to thrive.


Occasionally, I’d win a battle like successfully getting a ramp, but it never outweighed the stark reality and overwhelming fear that consumed me: I could die here. Growing up my mother always said that I could endure pain simply by putting mind over matter. When I started to feel the emotional and physical toll of attending an inaccessible institution, I thought that maybe I wasn’t strong enough—in fact, it’s the system that’s broken.


A crucial way to fix our nation’s inaccessible school system is to share our experiences, to refuse to remain silent. We must amplify our stories because our rebellion disrupts the pattern. We must celebrate the rich values of disability art and culture and recognize that inaccessible colleges force out passionate disabled students who bring critical perspectives to an otherwise non-disabled discussion.


We must redefine our approach because the needs of disabled people are not “special,” our needs are human. At the bare minimum, disabled students deserve safe, accessible, and equal access to the education we’re guaranteed by law.


This upcoming school year I have decided to transfer to a new college. I do so begrudgingly, as I won’t be graduating from my dream school. But I try to remind myself that this dream school doesn’t even have a ramp to their stage for my graduation. They never expected me to survive there in the first place.



Oaklee Thiele (she/her) is a disability rights activist, public speaker, and protest artist whose work chronicles life from the disabled perspective and addresses systemic discrimination within academic and artistic institutions. She is the co-founder and head artist for the My Dearest Friends Project, an international art collaboration that archives, illustrates, and amplifies the stories of disabled individuals.

The post In the Stairwell, We Will Die appeared first on Rooted in Rights.


The Many Challenges of Working Disabled Women in Pakistan

By Ruqiya Anwar / 2022-09-15
Posted in

In Pakistan, disability has been overlooked and ignored in all aspects of life, including administrative, financial, and legal spheres. As a result, people with disabilities are the most disadvantaged since we are unseen, unheard, and miscounted in the country.


Notably, one billion individuals, or 15% of the world’s population, are believed to be disabled. People with disabilities are marginalized in society and face a world steeped in prejudice, pity, and humiliation. We often have limited access to decent education and meaningful jobs. The number of people with disabilities in Pakistan is estimated to be about 30 million. Disabilities are classified as physical hearing, vision, speech, and intellectual. These are further classed as mild, moderate, and severe/profound.


Understanding the specific plight of disabled women in Pakistan is critical since we are often at the lowest rung of social, economic, and cultural marginalization. Women are generally mistreated and subjugated in Pakistani society; disabled women endure the most of this discrimination. We are frequently excluded from family gatherings; people look at us with pity. People stare or ask intrusive questions—on the streets, in marketplaces, even in educational institutions—which causes or exacerbates the depression with which many of us live.


People with disabilities, as well as groups advocating for our rights, confront several challenges and restrictions. The challenges of disabled women and girls are not treated separately from those of men and boys with disabilities, which erases the specific issues we encounter at the intersection of ableism and sexism. Unfortunately, there is no data on disabled Pakistanis outside the gender binary. There is little public awareness of the issues affecting people with disabilities in general, let alone disabled people of marginalized gender; government commitment and will are also lacking. As a result, the key stakeholders are unfamiliar with the rights of disabled people of marginalized gender, as well as the laws, policies, and protocols associated with us. Consequently, there is minimal adequate implementation. We routinely get left behind.


In 1981, the government of Pakistan passed a law to provide for the employment, rehabilitation, and well-being of disabled people in the country for the first time. The original law established a 2% quota for people with disabilities in all government and non-governmental organizations; a few provinces have since seen the quota increased to between 3% and 5%. The law also states that disabled people’s working conditions cannot be less favourable than those of other employees in an establishment. People with disabilities cannot be hired at a lower wage or with fewer benefits. In addition, the Pakistani government ratified the “ILO Convention on Vocational Rehabilitation and Employment of Disabled Persons.” It has also ratified the “United Nations Convention on the Rights of Persons with Disabilities.”


I’ve confronted several challenges to employment in Pakistan, as many other disabled people face. First, employers have a negative attitude about hiring me—despite my talent, qualifications, and capabilities. In Pakistan, the stigma is exacerbated by the fact that, for many, the only image they have of a disabled person is that of an impoverished street beggar.


Even if the stigma is removed, structural hurdles to accessing employment for people with visual, hearing, speech, mental, or physical impairments remain. This includes: getting to work (road quality and transportation), moving around the workplace (ramps, accessible bathrooms, etc.), and doing the work itself, with the help of technology and other accommodations.


Most importantly, Pakistan has one of the lowest percentages of female labour force participation in South Asia; women with disabilities face even more impediments to employment. Furthermore, rehabilitative and educational programmes tailored to the needs of people with intellectual disabilities are few, making them less employable.


There are additional challenges when an economy is predominantly agricultural, as it is in Pakistan. For someone with mobility issues, for example, being a productive worker in a rural economy can be impossible when navigating terrain that is inaccessible. Moreover, as I experienced, the country has a broad pool of potential employees. Without incentives, companies are less likely to choose applicants in whom they must invest money to accommodate workers.


Another barrier I face on the job is a persistent lack of job advancement opportunities. My employer, who wishes to establish an inclusive workforce, says it is difficult to find qualified women. Nearly all people with disabilities that it has recruited so far are men. Therefore, there are few job and training options for women with disabilities. However, there are positive instances of other local and multinational companies in Pakistan that have successfully established an inclusive workforce, where the best talent acquisition and management practices are used. Foreign stakeholders actively promote diversity in industries such as telecommunications, fast-moving consumer goods, and tobacco.


Discrimination and biases make it hard for disabled workers to find work. However, there are other factors that keep people with disabilities from seeking work in the first place. Many people with disabilities face a variety of challenges when looking for work, going on interviews, and working in an office.


For example, I also face obstacles when using public transportation. It is difficult to travel by taxi or auto-rickshaw. This makes finding new or better job opportunities a challenge. Public transit is usually uncomfortable and even dangerous. Buses are neither well-regulated nor easily accessible to those with disabilities. Not only are there no ramps, bells, or braille buttons, but buses frequently do not stop for those with disabilities at all. While changes in some locales are being seen, the overall infrastructure is still unacceptably abysmal.


Discrimination against people with disabilities in Pakistan is serious and prevalent, yet I believe it is primarily motivated by ignorance rather than hatred. I don’t think that Pakistani people dislike people with disabilities; many simply do not know how to interact with us.


I am hopeful that we can work together to develop and execute initiatives to boost employment and earnings for Pakistani disabled people of marginalized gender. A critical intervention is to minimize early prejudices towards disabled girls, women, and children and adults outside the gender binary as well as their own internalized stigma. Well-established, evidence-based anti-stigma interventions should be used in education to develop students’ knowledge, understanding, and beliefs about people with disabilities.


Other initiatives include improving education-to-career transition activities to reinforce ideals of independent living, economic self-sufficiency, and increased post-secondary educational achievement among disabled people of marginalized gender. We must also try to decrease isolation through mainstreaming, mentorships, networks, and early job experience.


I strongly believe that the way forward for disability justice in Pakistan must include full participation from disabled Pakistani women, girls, and others of marginalized gender. Our contributions to policy, decision-making processes, and laws affecting us must be recognized for the true value that they hold. It is high time to make a commitment to end the exclusion of disabled women, girls, and others of marginalized gender. The crucial first step must be recognition of the untapped strength and resilience we possess, so that we can lead the way.




Ruqiya Anwar (she/her) is an independent researcher and sociopolitical analyst from Pakistan. She holds a Master’s degree in Media and Communication Studies.

The post The Many Challenges of Working Disabled Women in Pakistan appeared first on Rooted in Rights.


Autistic Self Advocacy Network Comments on Title IX Regulations

By Meredith Bartley / 2022-09-13
Posted in

These comments are available as a PDF here.

September 12, 2022 
Alejandro Reyes
U.S. Department of Education
400 Maryland Ave. SW, PCP–6125
Washington, DC 20202

Autistic Self Advocacy


Autistic Self Advocacy Network Comments Re: SAFE Initiative Call for Testimony

By Meredith Bartley / 2022-08-29
Posted in

These comments are available as a .pdf here.

The Autistic Self Advocacy Network (ASAN) appreciates the opportunity to provide recommendations on the contents of


All Kids Deserve Inclusive Classrooms

By Meredith Bartley / 2022-08-18
Posted in

In an interview with MSNBC, a representative for the group Moms for Liberty appeared to imply that LGBTQ+ children should be educated in separate


Congress Leaves Disability Community Priorities Out of Inflation Reduction Act

By Noor Pervez / 2022-08-12
Posted in

ASAN is deeply disappointed by the Inflation Reduction Act. While the bill contains some small investments that will tangentially benefit the disability community, almost