By Eric Goldscheider G‘93
The Americans with Disabilities Act was a response to an appalling problem: widespread, systemic, inhumane discrimination against people with disabilities.
ROBERT L. BURGDORF, THE DISABILITY RIGHTS SCHOLAR AND LEGAL ADVOCATE WHO WAS INSTRUMENTAL IN WRITING THE LANDMARK BIPARTISAN LEGISLATION
Since its passage thirty years ago, the Americans with Disabilities Act has improved many aspects of life for people with disabilities: buildings, mass transportation, hiring practices, and telecommunications are some of the sectors that have made transformative accommodations. Yet there is still more to be done, and, as much of the world pivoted to remote living, working, and learning in 2020, familiar gaps widened. In honor of the 30th anniversary of the ADA, we turn to five voices in the community to explore the ways the Libraries work to ensure resources are available to all.
THE ADVOCATE: JOSHUA PEARSON
JOB NUMBER ONE FOR JOSHUA PEARSON ’15, G’17 IS LETTING YOU KNOW HE EXISTS.
More precisely, he gets the word out that UMass Amherst has an Assistive Technology Center (ATC) located on the Lower Level of the Du Bois Library, and that he, as its director, is available to advise, train, and coach anyone on campus, whether they think of themselves as disabled or not. Pearson’s mandate is to serve people with five categories of disability; those relating to vision, hearing, speech, mobility, and cognitive impediments. The last includes learning as well as psychological disabilities. Another way is to think of the categories as physical, mental, and sensory disabilities.
Roughly 3,000 students on campus are registered with disabilities, and about 500 employees are on record as needing accommodations in the workplace, says Pearson. He thinks there are many more who can benefit from his services, pointing to the 60 percent dropout rate for people with disabilities.
Tools, ranging from simple door openers to ever-evolving text-to-speech software and pilot classrooms that respond to voice commands, are an important part of what he offers.
Pearson is part of a Library and campus network helping build a consciousness around disabilities—an umbrella term for a wide variety of impediments to learning. His ethos includes pride while acknowledging a sense of loss.
Anybody can develop a disability at any time in their lives. It’s important to know that just because you have a disability, your life is not over, you can still access academic resources or do your job independently.You might not be performing tasks in the same way as before, but you can still live a life full of fun and purpose.
JOshua Pearson
Just as anyone can become disabled, everyone is welcome at the ATC to try technology or ask questions, regardless of whether they are registered with Disabilities Services or have ever been diagnosed. Disclosure can be a tricky thing for people with what are often called “invisible” disabilities, such as dyslexia, another broad category denoting difficulty decoding, usually of text. A person slowly losing their eyesight might be hesitant to submit themselves to the stigma that ailment can carry while at the same time struggling with a course that has not been designed to include every kind of student. “Maybe they are looking at it through the lens of an inferiority complex,” said Pearson. “Having a disability is still seen as being less than whole in our society. These access technologies can mitigate stigma and help people reach full independence in a world which has been built to serve the needs of
the non-disabled.”
By now, you may suspect that everyone, even you, could benefit from some of the devices and techniques. “Everybody talks to their phone these days, dictating texts or emails,” says Pearson. “People will have their devices read books or websites to them at the end of a long day or in the car. These are examples of how assistive technologies initially designed for the disabled have become a part of the mainstream.” Disability is more common than people think: More than sixty million Americans have a documented disability, according to Pearson.
The Assistive Technology Center has a soundproof room with work stations where people can speak to their computers without disturbing others. The other room has space for up to four people to receive training simultaneously on any of dozens of applications that Pearson has compiled on a centralized server. While the majority of learners are accessing education remotely, the Assistive Technology Center has a virtual space where copies of access technology can be utilized by distance learners.
The decentralized universal access to assistive technologies the ATC provides to the university community means that students, staff, and faculty who rely on them can work and study wherever they feel most comfortable and efficient. Josh predicts that graduation rates among people with disabilities will increase as the awareness of his services grows. He also has a lending program for hardware so that students who need to access devices beyond their financial means can borrow them from the university. “Access to technology should not be an impediment to receiving education,” he said. Much of the hardware and some licensed software is beyond the means of people living on a fixed income, as is the case for many disabled people. “I want to ensure we are doing our institutional due diligence in removing these barriers to education for students with disabilities, the same as we do for non-disabled students,” said Pearson. “Tech inequity, and the stresses it puts on people’s lives, is very real.”
THE archivist: Aaron Rubinstein
AMONG THE HOLDINGS OF THE LIBRARY’S SPECIAL COLLECTIONS AND UNIVERSITY ARCHIVES (SCUA) ARE 30 COLLECTIONS THAT CAN HELP PAINT A PICTURE OF THE BIRTH AND EVOLUTION OF THE DISABILITY RIGHTS MOVEMENT.
The Visibility for Disability Project is now on track to put about 20,000 objects online with the support of a $250,000 grant from the Council on Library and Information Resources.
Documents chosen for digitization help illustrate the struggle for full civic participation for those with physical disabilities, and the struggle for rights for people with psychiatric disabilities. The collections span the years between 1863 and 2016 and, while rooted mainly in New England, include the papers of nationally recognized activists such as the late Judi Chamberlin, a pioneer in the psychiatric survivors’ movement, and Elmer Bartels, a key figure in creating early statutes regarding civil rights for people with disabilities. There are records about facilities, too, such as the Belchertown State School and the Clarke School for the Deaf.
These collections are among approximately 200 that are accessed online through SCUA’s digital repository, Credo. During his development of the site, then-University and Digital Archivist Aaron Rubinstein ’01 (now Acting Head of SCUA) attended a workshop with assistive technologies specialist Joshua Pearson.
There were a number of “aha” moments as they visited the collections online. Pearson, who has been blind since birth and who is well-versed in sophisticated software for navigating the digital world with his keyboard (and increasingly, voice), demonstrated that after about 45 seconds, he had reached a point where he couldn’t navigate anymore.
Rubenstein moved to redesign Credo “from the bottom up,” he said. “The main design principal became accessibility, driving all the visual aspects of the site.” Funders were impressed, and this became an important talking point in securing the grant to made the digitization of the disability rights collections possible.
Building on the collection of the Library’s namesake, social justice writer and activist W. E. B. Du Bois, Special Collections has added considerably to its social justice and civil rights collections. People in the disability rights movement who saw themselves in the broad tradition of human rights movements have engaged with the archives to further their research.
THE LAWYER: LAURA QUILTER
THE INSTITUTIONAL LEARNING UMASS AMHERST IS UNDERGOING IS ALSO MAKING IT A LEADER AMONG ARCHIVISTS. “UMASS SPECIAL COLLECTIONS ARE AHEAD OF THE GAME,” NOTES LAURA QUILTER. “THAT’S GREAT FOR US, AND ALSO DISAPPOINTING WHEN YOU CONSIDER ALL THE LIBRARIES THAT ARE NOT THINKING ABOUT THIS.”
Quilter points out that innovations for accessibility end up benefiting many people. For instance, carefully crafted descriptions of visual material, intended for persons with sight impairments, enhance everyone’s access to work by making search engines more effective, and assist scholars in data-mining large collections. Similarly, technologies such as voice recognition will help people in many circumstances.
The Libraries are currently auditing our entire presence on the web, including the sites of hundreds of journals, databases, and research repositories to which we subscribe. Quilter led the Libraries’ Accessibility Task Force, which underwent an organization-wide accessibility assessment in 2017-18.
One of Quilter’s frequent partners, the Office of Disabilities Services, has a section dedicated to document conversion under the direction of Monika Schrauder ’06, G ’10, G ’14, who devotes much of her time to communicating with publishers and intermediaries to obtain digital files for textbooks and other materials that can be manipulated to meet various disability-related needs.
Her field is evolving, especially as smart phones are providing what Schrauder calls “accessibility on the go.” Students adept at technology are latching onto these innovations. “Many tools and apps are inexpensive or free of charge. This helps make access to education more equitable,” she said. The university also makes tools available to the campus community beyond people registered with Disability Services. “This is in line with universal design,” said Schrauder. At the same time, there are publishers who are not keeping up with their responsibilities, forcing people like Schrauder to find work-arounds to make sure class material is accessible to all students.
“If a student is assigned a book and it’s not accessible then the University is on the hook for that assignment,” she said. The same is true for all educational materials. The university has more control over its internal resources, but finding vendors who build accessibility into everything they produce has also become a priority.
“There is an ethical component to this, which I think is the more compelling one, but I am also happy to talk about the legal argument,” says Quilter. “If you don’t want to do it because it’s the right thing to do, maybe it would be helpful to also know that a court in Los Angeles held a whole community college district liable for the libraries providing access to things that were not accessible.” The U.S. Department of Education posted a video to YouTube last spring, highlighting accessibility requirements made more acute by the sudden shift to remote learning on a massive scale.
To help address accessibility issues, the Libraries created a User Experience and Web Services librarian position this year, to bring on board someone proficient in usability testing and principles of universal design. Therese Kaufman joined the Libraries in March, and is leading a library-wide redesign of the website, focused on accessibility. (See a related story on Kaufman in this issue.)
According to Quilter, higher education in general, including UMass Amherst, is lagging in terms of keeping up with the laws emanating from the Americans with Disabilities Act. She thinks the current transition to online education highlights the need for accessibility, as well as new challenges. “This moment—transitioning large-scale to online education—creates enormous opportunities to increase accessibility, but also new challenges to ensure that people with disabilities don’t lose their privacy.”
When Joshua Pearson leaves home in the morning, for instance, he tells his virtual helper to turn off the appliances and lock the door. Over the previous hour
it had started his coffee maker, brought him the day’s top stories, and called his rideshare. Every one of those interactions leaves a digital trace.
Tools that might be a convenience for some are a relied-upon necessity for others. Pearson foresees interactive classrooms becoming the norm. As more and more homes employ the so-called internet of things, people will expect the workplace to follow. Why shouldn’t anybody, whether they can walk and reach things or not, be able to control monitors, thermostats, lights, and teaching resources with voice commands? Or why shouldn’t listening devices automatically give a read-out of words spoken to people who can’t hear? Or cameras feed descriptive details about objects to people who can’t see?
But all this activity leaves a digital trail, which can erode people’s privacy. The process of doing research, even now heavily correlated to key strokes, will leave more and more metadata in its wake, down to details like how long someone lingered on a page and where they clicked next.
Quilter struggles with the implications of the mere existence of all this data, especially at institutions built around free inquiry and the exploration of ideas without fear of unintended consequences. She believes that much of the data created by digital interactions should be extinguished unless there is an overriding reason not to. “It would be irresponsible to keep data that could harm people without carefully evaluating and justifying the need for keeping it,” she said. “Privacy needs to be protected because intellectual freedom requires that people feel safe and in fact are safe in doing the research they want to do.”
These are complicated issues which don’t lend themselves to easy solutions. One step Quilter thinks the Libraries should take is to create a privacy task force to systematically go through and look at these kinds of concerns, much like the accessibility task force kicked off the current drive to make it a leader in reducing barriers.
Those who are enthusiastic about the possibilities of deeper and wider digitization, as well as those sounding cautionary alarms, have overlapping interests in figuring out how to safely expand inclusivity, according to Quilter. “We are constantly having to think about both issues.”
THE STUDENT: DEANNA FERRANTE
DEANNA FERRANTE, WHO GRADUATED WITH A BACHELOR OF SCIENCE IN PSYCHOLOGICAL AND BRAIN SCIENCES, A MINOR IN EDUCATION, AND A LETTER OF SPECIALIZATION IN DEVELOPMENTAL DISABILITIES AND HUMAN SERVICES, SAYS THAT WITH THE ADVENT OF COVID-19 AND THE HEADLONG LEAP INTO DISTANCE LEARNING, POSITIONS FOCUSED ON ACCESSIBILITY OF DIGITAL RESOURCES ARE MORE IMPORTANT THAN EVER.
Without comprehensive and systemic attention to digital accessibility, large swaths of students will be completely shut out of participating in courses.
Ferrante’s consumer manager at the campus’s Disabilities Services office referred her to the Assistive Technology Center in the Du Bois Library when she arrived on campus. It was a life-changing encounter. As an intern with the ATC, she put together a manual of the tools it offers. “Assistive technology for me was a transformational experience because college is a time where a million tasks are thrown at you at the same time,” said Ferrante. “Today, I couldn’t live without these extra little tools that may not seem big to anybody else.”
Ferrante is open about her disability, which involves difficulties with reading comprehension, but also understands why others with disabilities would want to shield themselves from the stigma that it still carries fairly widely, including in academia.
Screen readers, something blind people depend on, were a revelation for Ferrante. The suite of tools Pearson introduced her to and coached her on, many of which combined speech-to-text and text-to-speech applications with strategies and support for gathering, organizing, and expressing information and ideas, kept her going.
Dropout rates among students with all kinds of disabilities are alarmingly high to begin with, and the sudden shift to remote instruction poses an added danger. “In the midst of all this mayhem, professors are not being given information to make the online course content accessible to all students,” Ferrante wrote in a recent blog post.
“Documents are going to be uploaded in unreadable formats for blind students and lectures are going to be held via Zoom without transcription for deaf students.” She is calling on professors inexperienced in creating inclusive online content to “reach out to their disability services, accessibility offices, or assistive technology centers to find out what they can do to support students with disabilities.”
As a student, Ferrante got to know peers with a wide variety of disabilities, inspiring her to create a community on campus among people experiencing a variety of barriers. They started with a simple message posted around campus which read, “Are you a person with a disability or an ally? Help to make disability part of the conversation on our campus.” They soon had a mailing list of more than 100 people. “This was before we even had a name,” said Ferrante of what would become the Alliance Against Ableism, which acts as a communications node for members’ ideas and concerns.
This is the kind of spontaneous activism and organization-building that the Visibility for Disabilities exhibit showcases through the records of people and associations that helped shape the evolving consciousness as well as the social and legal frameworks around disabilities.
tHE ACTIVIST: FRED PELKA
AS A CHRONICLER OF THE DISABILITIES RIGHTS MOVEMENT IN THE UNITED STATES, FRED PELKA HAS TRACKED DOWN, AND IN MANY CASES CONDUCTED, ORAL HISTORY INTERVIEWS WITH ORGANIZERS, THINKERS, AND LEGAL AND
STREET-LEVEL ACTIVISTS WHO CONTRIBUTED IN FOUNDATIONAL WAYS TO WHAT WE SEE NOW AS A PROFOUND, IF UNFINISHED, SHIFT IN HOW PEOPLE WITH DISABILITIES ARE ABLE TO FUNCTION IN SOCIETY.
Along the way, he has experienced several moments which felt like gut punches upon learning that troves of papers with valuable insights into the movement’s defeats and victories had been cast into dumpsters.
Dennis Haggerty, a key figure in codifying equal access to education, told Pelka at the end of a long interview that he had a garage filled with documents, memorabilia, and ephemera. Pelka was horrified to learn that the lawyer, whose many achievements included overseeing the 1972 consent decree coming out of the landmark PARC v. Pennsylvania case, was about to move to assisted living and that his condo association gave him two weeks to clear out. Pelka made some frantic calls around the country and, with some cajoling, got Temple University to accession the papers of their law school alumnus. “I really had to sell them on the idea,” said Pelka recently.
An earlier encounter, when he learned that an unabridged catalogue of Valor, the monthly newsletter of the American Federation of the Physically Handicapped going back to the 1940s, had been ruined by a basement flood, is “seared into [his] brain.” Also lost were meeting minutes and complete correspondences. “I have a bunch of stories of really significant collections that got lost,” he said. “It has been an obsession of mine to identify orphan collections of important disability materials and make sure they are safe.”
When Judi Chamberlin, a leader in the psychiatric survivors movement, died ten years ago, Pelka got in touch with Robert Cox, the late head of Special Collections, and found an enthusiastic partner in preserving, indexing, and eventually digitizing a trove that could have easily vanished. “I know that one person has already written her Ph.D. based on those papers,” said Pelka of ways in which his and Cox’s instincts for preservation are paying off. They were only slightly ahead of the times, and also just in the nick of time. Recently, there has “been an explosion in disability history scholarship and disability studies,” said Pelka of the growing recognition that “disability, like race, gender, and class, is an important prism to look at all history.” You can choose any period anywhere and if you look closely enough, you’ll find evidence of physical and cognitive differences.
A turning point in that history, the passage of the Americans with Disabilities Act, happened thirty years ago. Many records from the antecedents of those who achieved that victory have been lost. What Pelka calls, “the second cohort” of activists are now at or nearing the end of their careers, increasing the urgency of ensuring papers are cared for.
“The disabilities rights movement in America,” he emphasizes, “intersects with the Labor Movement, African American civil rights, the Women’s Movement. It’s a profoundly important movement in American History.”
These materials are not only vital to scholars weaving a narrative of recent times, but also to future activists who can learn from the experiences of those who went before and look to them “as a model,” said Pelka. “What if we didn’t know who Rosa Parks was? If that history was lost, what a loss that would be for all of us.”
Pelka, together with his life partner Denise Karuth, who died in 2019, donated their papers to UMass. Karuth was an internationally recognized champion for the rights of people with disabilities in the struggle for affordable, accessible mass transit. Pelka has published several books relating to disabilities including, What We Have Done:
An Oral History of the Disability Rights Movement (UMass Press, 2012).
Pelka’s current projects include continuing to interview Massachusetts-based advocates, and recording their oral histories, with a particular focus on the history of the Boston Self Help Center.
He comes across “orphan collections” of papers with some regularity. The Libraries are an important node in his work. It is one of the few places that is systematically building a collection on this topic, he said. “I was so relieved to begin a relationship with them because up until then I was running around every time” he needed a home for pages of history about to be swallowed up by the ages.
