Many people with disabilities rely on assistive technology—tools like crutches, wheelchairs, and software—to help them with everyday tasks, said guest speaker Amy Hurst, Ph.D., associate professor of human-computer interaction at New York University and director of the NYU Ability Project. 

‘There’s Another Way’ 

The problem is that 30% of assistive technology is abandoned by users, said Hurst at the April 10 event, held at the Lincoln Center campus and livestreamed. These devices, occasionally created without user input, can be designed poorly. It can be difficult to obtain the devices themselves. Sometimes, they just don’t work well. 

“The system is broken,” Hurst said. “[But] maybe there’s another way.” 

What if you could create your own device—in a fast, customizable, affordable, and reproducible way? 

Today’s technology makes it possible for people without special training to obtain free designs and generate their own tools. As long as you—or someone you trust—can access a computer, you can send a design file to a machine that builds a physical tool for you. The final cost? Potentially under $300.

Empowering People with Disabilities 

To figure out how to make this more accessible to clinicians and users, Hurst conducted several projects, including partnering with a physical therapy program to create 3-D printed assistive technology for both simulated and actual clients. 

Two of the biggest roadblocks to accessibility are limited time to work on these devices and the occasional fickleness of the technology itself, said Hurst. But 3-D printing assistive technology also provides an opportunity—the creation of jobs, especially for those who identify as neurodivergent. 

Hurst recalled teaching 3-D printing to young adults with intellectual disabilities, who successfully created models of their own. 

“How can we provide these experiences that can empower people?” she said. “Many people with intellectual disabilities have a really high unemployment rate around 60%. … What else can we do here to show them some different potential?” 

The eighth Distinguished Lecture on Disability was organized by Fordham’s Disability Studies Program and Research Consortium on Disability. The event was co-sponsored by the Office of the Chief Diversity Officer, Graduate School of Education, Graduate School of Social Service, Communication and Media Studies Department, and Computer and Information Science Department.

That was the message of the “Disabled Freedom Portals,” Fordham’s 2022-2023 Distinguished Lecture on Disability delivered online last month by Leah Lakshmi Piepzna-Samarasinha, a disability and transformative justice movement worker and author.

“As a disabled person, you are needed. If you’re not disabled, you are also needed to learn from, support, and lift up disabled leadership and organizing in these times. Imagining disabled futures that are free is always an act of resistance,” she said, noting that in the minds of some, “we are not even supposed to survive to a future. We are not supposed to be free, and we are not supposed to have a right to decide what that freedom consists of.”

She acknowledged the activism she has seen from many in the community.

“I’m here to tell you that I know so many of you are already fighting like hell and we have to keep fighting like hell. Everything’s possible to win.”

For the April 12 talk,  Piepzna-Samarasinha defined disability as “encompassing anyone who is disabled, chronically ill, neurodivergent, mad, deaf, or more than one. And that’s been 33% of the United States for a while,” she said, noting that some experts say disabled people are now close to being a majority of the population, given how many people now exhibit symptoms of long COVID and PTSD brought on by the pandemic.

She talked about the many ways disabled people have been discriminated against and outright attacked in modern history, from the Nazis demanding that parents surrender their disabled children to be killed, to violence against the trans community, to CDC director Rochelle Walensky calling it “encouraging news” in 2022 that most COVID deaths were attributed to people with co-occurring conditions, to New York City Mayor Eric Adams planning to institutionalize severely mentally ill people against their will.

“It’s so important for us to remember that none of these attacks are separate,” she said. “The connections between fascism, ableism, trans hatred, racism, and all forms of oppression are crystal clear.”

Piepzna-Samarasinha also shared how she came to be involved in disability justice.

“I’ve been autistic since I was born, even though I only figured it out when I was 41,” she said. “I got chronically ill and disabled when I was 21. And as a young neurodivergent survivor of violence, I was so lucky that I found communities of other young disabled survivors who are involved in punk, anti-Giuliani, queer, and anti-police brutality organizing in New York, and later in the psychiatric survivor movement in Toronto.

“None of us were experts, but we all know that we are experts on each other, our own lives, and we have so much to learn from each other.”

The annual Fordham Distinguished Lecture on Disability is organized by the Disability Studies Program and the Research Consortium on Disability. It is sponsored by the Office of the Chief Diversity Officer and co-sponsored by the Center for Community Engaged Learning, English Department, Graduate School of Religion and Religion Studies, Office of Multicultural Affairs, Office of Disability Services, Peace and Justice Studies, the Graduate School of Social Service, and Women, Gender and Sexuality Studies.

Watch the entire lecture below:

“It still gives me chills to think about what a moment that was. It was … taking ownership of this term, rather than it being used to demean or marginalize her, that gave people a framework to understand her. And so she shifted from being somebody that was enigmatic or strange to somebody who was a person with autism who wasn’t ashamed of having autism,” he said on April 4 in an online lecture.

Grinker, an award-winning professor of anthropology and international affairs at George Washington University and an expert on autism and mental illness, was the main speaker at the 2021/2022 Fordham Distinguished Lecture on Disability. His book Unstrange Minds: Remapping the World of Autism (Basic Books, 2008), inspired by Isabel, won the 2008 National Alliance on Mental Illness KEN award. 

In his speech, he shared the most critical findings from his newest book, Nobody’s Normal: How Culture Created the Stigma of Mental Illness (W.W. Norton, 2021). He argues that the main cause of stigmatization against those with mental illnesses and disabilities is something that we don’t often consider—the social, cultural, and historical contexts in which we live. 

‘The Ideal Person’: How American Society Became Divided

Over the past two decades, disabilities have been increasingly embraced as part of being human, rather than something shameful and frightening, said Grinker. He said he witnessed this transformation in Isabel, who is now 30, as well as his students. On the first day of class in front of nearly 300 peers, a student announced that he had Tourette syndrome, Grinker recalled, because he wanted his peers to understand the reason behind his unusual behavior. 

Grinker said that society is becoming less judgmental. Increasing education and public awareness have contributed to this, he said, but what primarily shapes our stigmas against those who are “different” are the social, cultural, and historical contexts in which we live.

Capitalism, for example, created conditions that led to stigmatization. The ideal American possessed two traits that were central to capitalism: independence and autonomy. Those who lacked those traits—or were unable to possess them—were viewed as “abnormal,” he said.  

“Our judgments about mental illnesses come from our definitions of what, at different times and places, people consider the ideal society—the ideal person,” Grinker said, adding that we are now moving away from the definition of an ideal person as defined by capitalism. 

He also drew attention to a phenomenon that helped to destigmatize mental illness and disabilities: war.

During World War II, an unprecedented number of people suffered from mental illness. In response, U.S. President Harry Truman established the National Institute of Mental Health and ordered the military to create a manual used for the diagnosis of mental disorders.

To Be Normal Is To Be ‘Boring’ 

Many people aspire to be “normal,” but this mindset is actually a damaging illusion, said Grinker. He recalled a 1951 research study conducted by his father and grandfather, who were both psychiatrists. They studied a group of men who they divided into two groups: those who screened positive for mental illness and those who were “normal.” They found that the latter lacked ambition and creativity. As Grinker put it, they were “boring.”

“What my grandfather and my father were suggesting was that normality was crippling—that some degree of mental illness, some degree of mental difference might be necessary for humanity to remain vibrant, creative, and diverse,” Grinker said. 

Humanity’s stigmas can never be completely eradicated—but that doesn’t mean we can’t resist them, he said. 

“We only need to look at the kinds of examples that I gave you earlier, whether it’s my daughter, Isabel, or my students, to give us hope,” Grinker said. 

The sixth Fordham Distinguished Lecture on Disability was co-organized by the Disability Studies Program and the Research Consortium on Disability and co-sponsored by the Conference of Arts & Science Deans and the Office of Research. The Q&A following the lecture was co-moderated by Sarah Macy, FCLC ’22, a psychology major and disability studies minor who identifies as an autistic woman, and Micki McGee, Ph.D., associate professor of sociology at Fordham and the parent of a neurologically divergent young adult.

Watch a full recording of the lecture below: 

“We wanted to get into quality education, the ability to move around the city in our communities, the ability to get jobs, get paid, live in the community, get married, have children. And I think … we realized we could make a difference if we did it ourselves.”

These words come from Judith “Judy” Heumann, a 72-year-old pioneer of the disability rights movement recently featured in TIME’s list of the most influential women of the past century. Heumann reflected on her life of activism at Fordham’s fifth annual Distinguished Lecture on Disability, “The Disability Rights Movement: Where We’ve Been, Where We Are, and Where We Need to Go,” in a Zoom webinar on Oct. 14. 

A Five-Year-Old ‘Fire Hazard’ Girl

Heumann became New York City public schools’ first teacher in a wheelchair after winning a landmark court case. She helped spearhead the passage and implementation of federal civil rights legislation for disabled people, including the Americans with Disabilities Act and Section 504, a federal law that prevents discrimination against individuals with disabilities. She also served in various leadership roles, including the World Bank’s first adviser on disability and development and the first special adviser for international disability rights under the Obama administration. In recent years, she has been working to change the portrayals of disabled people in the media as a senior fellow for the Ford Foundation. 

At the beginning of the webinar, she recalled that when she was a five-year-old girl with polio, the principal of a local school told her she couldn’t attend classes because she was a “fire hazard.”

“As I was getting older and meeting other disabled people, in my special ed classes and then at camp, it was becoming very apparent that we were facing discrimination without any real group of people speaking up against discrimination,” said Heumann, who had joined students earlier that day for a Q&A about the recent film Crip Camp, which featured the stories of disabled teens—including Heumann—at camp in the 1970s and their role in igniting the disabilities civil rights movement.

In that same period, she said, she also saw scores of people on TV standing up for civil and women’s rights across the country. They inspired her to lead demonstrations, start new organizations, and use legislation to fight discrimination directed toward the disability community, all while working closely with the community, religious leaders, and labor unions.

“All [these]types of activities were what enabled congressional representatives and U.S. senators to understand that the discrimination that disabled people were facing was not something that happened once in a while,” Heumann said. “It happened in every community, in every state—and it happened regularly.” 

Ongoing Obstacles for the Disability Community

In the wake of much progress, the disability community continues to struggle, said Heumann. Many Americans don’t realize they have a disability protected by law; others face stigmas and repercussions related to their disability, she said. There is a disproportionate number of disabled individuals in juvenile and adult facilities—people who may not have ended up in prison if they’d received “appropriate services along the way.” There isn’t enough money being dedicated to education for both nondisabled children and disabled children on local, state, and countrywide levels, she said, and many teachers-in-training at colleges and universities are not taught how to teach students in inclusive settings. 

Toward the end of the evening, the moderator of the event, Navena Chaitoo, FCRH ’13, a research manager at New York City mayor’s office of criminal justice, asked Heumann how people could take specific steps to help the disability community. 

“We’re talking about stronger parent training programs. We’re talking about better programs in universities for teachers, principals, and superintendents,” Heumann said. “We’re talking about our local school boards. Who are the people that you’re electing? … Are they fighting for you and your kids with disabilities?” 

“It all gets, to me, back to voting and knowing the people who are running for office and being more demanding and working collaboratively together.”

‘We Need to Normalize This’

In a Q&A, an audience member asked Heumann how society could lower stigmas around “invisible disabilities” like mental illness. 

“You look at Covid right now, and we’re talking about people having increased anxiety, increased depression, other mental health disabilities, and our inability to speak about this is both harmful to the individual person, to the family, and to the community at large. And so I think like with each category of disabled people, we need to normalize this,” Heumann said. She added that that specific movement needs to be led by people who have psychosocial disabilities themselves, like Andrew Imparato, executive director at Disability Rights California, who has openly spoken about his experience with bipolar disorder. She emphasized that we need to listen to people’s experiences and try our best to understand them. Lastly, she noted the importance of advocacy across generations and for youths, including students, to stand up for themselves. 

“Most importantly is allowing people the space and giving people the protections that they need,” Heumann said. “We have 61 million disabled people in the United States. If 5 million of us on a regular basis were speaking up and speaking out, it would have an amazing impact.” 

The live Zoom lecture, which featured two American Sign Language interpreters and live captioning, comes under two key initiatives on disability at Fordham: the disability studies minor and the research consortium on disability. The event was organized by the Faculty Working Group on Disability and co-sponsored by the offices of the provost and chief diversity officer, the Graduate School of Education, the School of Law, the Gabelli School of Business, the Graduate School of Social Service, and the departments of economics and English. 

Watch the full webinar in the video below: 

“Disabilities are often perceived as a small minority issue—something that affects a mere 1%. That’s not the case,” said Sophie Mitra, Ph.D., co-director of the minor program, founding director of the Research Consortium on Disability, and professor of economics.”

Around one billion people worldwide live with a disability, according to the United Nations, including one in four adults in the U.S. alone, according to the Centers for Disease Control and Prevention. 

Since the minor started in January 2019, students in the program have learned how disability and normality are understood and represented in different contexts, from literature to architecture to fashion. The curriculum also helps bring awareness to issues of access on Fordham’s campus and beyond.

“Our minor program gets students to think about what it means to have a disability and what the consequences of having a disability might be in society,” Mitra said. “It’s an essential part of thinking about inclusion and what it means to be an inclusive society—and yet, it’s a dimension of inclusion that we sometimes forget about.” 

The program is designed to show undergraduates how to create more accessible physical and social environments and help them pursue careers in a range of fields, including human rights, medicine and allied health, psychology, public policy, education, social work, and law. 

Among these students is Sophia Pirozzi, an English major and disability studies minor at Fordham College at Rose Hill. 

“The biggest thing that I’ve taken away is that when minority rights are compromised, so are the majority … And I think when we elevate that voice and that experience, we come a little bit closer to taking into consideration that the only way to help ourselves is to help other people,” said Pirozzi, who has supervised teenagers with intellectual and physical disabilities as head counselor at a summer camp in Rockville, Maryland. After she graduates from Fordham in 2021, she said she wants to become a writer who helps build access for the disability community.

Now, in addition to the minor program, Fordham has a Research Consortium on Disability, a growing team of faculty and graduate students across six schools—the Graduate School of Arts and Sciences, the Graduate School of Education, the Graduate School of Social Service, the Gabelli School of Business, the Law School, and the Graduate School of Religion and Religious Education—who conduct and coordinate disability-related research at at the University.  

Since this past October, the consortium has created new opportunities to connect faculty and graduate students working on disability-related research across the University and in the broader New York City area, including lunch meetings and new research studies. This month, it launched its new website. The consortium is planning its first symposium on social policy this November and another symposium on disability and spirituality in April 2021. 

The consortium is a “central portal” for interdisciplinary research that can help scholars beyond Fordham, said Falguni Sen, Ph.D., professor and area chair in strategy and statistics, who co-directs the consortium with Rebecca Sanchez, Ph.D., an associate professor in English. That includes research on how accessible New York City hospitals are for people with disabilities, particularly in the COVID-19 pandemic.  

“What has come to light very acutely is the whole notion of how vulnerable populations have been differentially affected in this COVID-19 [pandemic],” Sen said. “The emergency responses to that population have not necessarily been as sensitive or as broad in terms of access as we would like it to be … And we were already thinking about issues of crisis because of what happened in 9/11.” 

The minor and the Research Consortium on Disability build upon the work of the Faculty Working Group on Disability: a university-wide interdisciplinary faculty group that has organized activities and initiatives around disability on campus over the past five years. The group has hosted the annual Fordham Distinguished Lecture on Disability and several events, including a 2017 talk by the commissioner for the Mayor’s Office for People with Disabilities.

“Fordham is known for community-engaged learning and how its work, both the research that we do and others, have relevance directly in people’s lives,” said Sen. “And that’s what we are trying to do.”

Eli Clare acknowledged during his 2019 Fordham Distinguished Lecture on Disability that these and other difficult questions he raised in his talk come without easy answers.

During his wide-ranging lecture, Claire analyzed what it means to restore something to its natural state. He also identified examples in which the paradigm of restoration falls short—as in instances of disability at birth when there never was a “before” that could be restored.

A writer, activist, and teacher, Clare wrestled with the notion of cure. Not entirely against it nor entirely for it, he embraced the ambiguities and contradictions of this “messy middle,” yielding no tidy solutions, but rather providing attendees with a starting point for vital, challenging conversations about disability and environmental destruction.

His talk, titled “Notes on Cure, Disability & Natural Worlds,” explored the meanings of words like restoration, natural, and normal, contextualizing the ideologies and assumptions that underlie their use, and considering what this language reveals about our culture and thinking.

The lecture built upon concepts explored in Clare’s latest book, Brilliant Imperfection: Grappling with Cure.

Clare’s writings “challenge us to think deeply about the ways that racism, ableism, homophobia, and transphobia shape our perceptions of what constitutes a ‘normal’ body-mind or a valuable life,” Interim Provost Jonathan Crystal said while introducing the lecture.

(Clare utilizes the term body-mind “to resist the white, Western impulse” to conceive of the body and mind as distinct systems. “They are one tangled, complicated, complex, ambiguous, contradictory entity,” he said.)

In his lecture, Clare called for a “broad-based grappling” with “the ideology of cure”—a way of thinking that has subtly permeated our culture. Cure, by its very definition, Clare explained, carries with it the notion of restoration—of something damaged in need of fixing.

Clare reflected on his own interactions with strangers, who often respond to his cerebral palsy by offering unsolicited platitudes, prayers, crystals, or vitamins. “Even if there were a cure for brain cells that died at birth, I’d refuse,” he said. “I have no idea who I’d be without my tremoring and tense muscles, slurring tongue. They assume me unnatural, want to make me normal, take for granted the need and desire for cure.”

“How would I, or the medical-industrial complex, go about restoring my body-mind?” Clare continued.

“The vision of me without tremoring hands and slurred speech, with more balance and coordination, doesn’t originate from my visceral history,” he said. “Rather it arises from an imagination of what I should be like, from some definition of normal and natural.”

By engaging with topics ranging from the pernicious assumptions about disability embedded in a Sierra Club antipollution advertising campaign to the work of environmentalists striving to transform a former agribusiness cornfield back to tallgrass prairie, Clare also explored connections between environmental loss and body-mind loss.

Through his interrogation of the concept of restoration, as applied to both people and ecological systems, Clare ultimately laid bare an essential question: “How do we witness, name, and resist the injustices that reshape and damage all kinds of body-minds—plant and animal, organic and inorganic, non-human and human—while not equating disability with injustice?”

Bella Eitner, a sophomore at the Rose Hill campus who is pursuing a minor in disability studies, said she found valuable lessons in Clare’s writing and activism. “I think getting into advocacy is really important, and a lot of the things that he says about it are very useful, especially coming from someone with a disability himself,” Eitner said.

The annual Fordham Distinguished Lecture on Disability, now in its fourth year, is organized by the Faculty Working Group on Disability and co-sponsored by the Provost’s Office and the Office of the Chief Diversity Officer.

–Michael Garofalo

This year’s speaker, Haben Girma, is a lawyer and an advocate for equal opportunities for people with disabilities. She is also the first deafblind person to graduate from Harvard Law School.

During her talk, titled “Disability & Innovation: The Universal Benefits of Inclusion,” Girma was able to gauge audience response with the help of interpreters in the audience who sent messages from wireless keyboards that output to a braille display on Girma’s keyboard, which she used throughout the evening.

In this way, Girma knew when the audience failed to respond to her opening greeting—which she joked about and then was able to register the ensuing laughter. Audience members were able to use the same system to ask her questions at the end of the lecture. Because Girma has some hearing in high frequencies, she is able to speak and pronounce clearly in a high range.

Throughout her talk, which took place on April 11 on the Rose Hill campus, Girma stressed the importance of using innovation to create unique solutions to eliminate barriers for people with disabilities.

“There are alternative ways of doing things, and alternative techniques are equal in value to mainstream techniques,” she said.

She noted that today there are many tools for making the world and its information more accessible, including screen readers for computer displays, captioning and transcripts for videos and podcasts, and text image descriptions for photos and other visual material.

But while technology is important for enabling inclusion, Girma added that it’s people who must initiate change.

“Access is all about communities, and communities choosing to be inclusive,” she said.

For Girma, whose father is from Ethiopia and whose mother fled from war in Eritrea, creating more positive stories around the concept of disability is key.

“As the daughter of refugees, a black woman, disabled—lots of stories say my life doesn’t matter. I choose to create my own stories. I choose to define what disability means,” she said.

“To me, disability is a powerful word. I associate it with civil rights, with the Americans with Disabilities Act (ADA). I’m proud to be part of the community that advocated for and obtained a powerful civil rights law.”

Girma was spurred into advocacy as an undergraduate when the cafeteria at her small college in Portland, Oregon, refused her request to convert their printed menu into a version accessible to blind people.

After trying to tolerate the situation for several months—and facing several unwelcome surprises in food selections—she spoke to friends who reminded her she could choose to take action.

“It’s our choice to accept unfairness or advocate for justice,” she said.

She reapproached the cafeteria manager, framing her request as a civil rights issue, and citing that the ADA prohibits discrimination against people with disabilities.

This time, the cafeteria agreed to make the change, and when a new blind student entered the school the following year, he didn’t have to fight for an accessible menu.

“That made me realize that when I advocate, it benefits our whole community, and I wanted to make that into a career,” Girma said.

Traveling the world as a consultant and public speaker, she now encourages others to look around their communities, identify barriers, and make a commitment to doing at least one thing to create more accessibility for people with disabilities.

To kick-start these efforts at Fordham, attendees were given small slips of paper and Girma asked everyone to write down one specific change needed on campus to foster more inclusion. The event organizers then collected their ideas.

“When you choose inclusion, you role model inclusion for people and encourage others to do the same,” she said.

Girma’s lecture was organized by the Faculty Working Group on Disability and co-sponsored by the Office of the Provost, the Office of the Chief Diversity Officer, the Global Healthcare Innovation Management Center, the Office of the Dean of the Law School, the English Department, and the Graduate School of Arts and Sciences.

–Nina Heidig

A video of the lecture, with captioning available, is below.