Best advice from students with disabilities as they move through their higher education journey
Laura Power at her Wexford home. (Photo by Jake Mysliwczyk)
For students with disabilities, navigating higher education is a journey of self-advocacy and struggle
“If people came into these things with more of an idea of helping a disabled person in general, we wouldn’t have to use our energy explaining the smallest details.”
Advocating for accommodations has been a constant, but largely quiet, struggle for college students with disabilities since the Americans with Disabilities Act became law in 1990. That struggle moved out of the shadows during the past year as the ADA passed the 30-year mark of its enactment while the COVID-19 pandemic disrupted higher education and moved learning to remote settings, prompting new groups of students to request accommodations.
By Mary Niederberger
June 7, 2021
Just a few weeks into her freshman year of college, Laura Power realized the lack of accommodations for her physical disabilities caused by cerebral palsy were going to be a higher hurdle to overcome than she had anticipated.
When she entered a biology lab at Edinboro University of Pennsylvania in her power wheelchair in the fall of 2013, she quickly understood she would not be able to use the equipment.
She wouldn’t be able to see what was on the other end of a microscope lens and her unsteady hands would likely prevent using the lab equipment. Since she hadn’t planned for this, she said she approached her professor hoping to work on solutions.
Instead of thinking of ways to help her, she recalled that the professor provided a stinging response:
“Actually Laura, no one should have let you in here,” the professor said, according to Power’s recollection. “When I saw you on the first day, I knew you were going to be a problem. But I wanted to let you down easily.”
Megan Majocha, who is Deaf, also had a difficult lab experience when she showed up for a 2016 summer internship at Magee-Women’s Research Institute & Foundation after her freshman year at Gallaudet University, which was founded to serve the Deaf and hard of hearing, and realized she would not have a full-time American Sign Language interpreter.
She spent much of the internship trying to read lips and ask questions through email or by writing on sticky notes.
“I was a freshman in college at the time and really didn’t know how to advocate for myself,” Majocha said during an interview via an interpreter.
Different settings. Different students. Different disabilities.
But the same issues: How to access a college education and its related opportunities despite the obstacles posed by a lack of support or accommodations? And, how to get those around them to understand the help they needed?
Both women overcame the hurdles they faced in their early college years and are now graduate students. But those freshman-year experiences reminded them they were no longer in the K-12 school system. There, the federal Individuals With Disabilities Education Act required schools to meet all of their needs and provide them with a “free and appropriate education” equal to that offered to their peers, and where their parents acted as their advocates in attaining services.
From preschool through high school, the educational accommodations for many students with functional needs are outlined in Individualized Education Programs, formal legal documents created by their districts with input from parents. Others receive accommodations through 504 plans, named after section 504 of the federal Rehabilitation Act.
But IEPs and 504 plans don’t follow students to college.
In the postsecondary world, federal law provides some, but not necessarily all, of the accommodations students might feel they need. Furthermore, college courses, along with accompanying assignments and exams, cannot be altered as they may have been in high school.
“I love the procedures. I love the connection with the world. It’s provable. It’s right there,” Power said. “But by the time I graduated from high school I knew that hard science might not be a viable option for me — between the drawings and shaky hands.”
Power, 26, and Majocha, 24, soon learned that as college students they had to advocate for themselves.
Both women had come from supportive environments in high school: Power at North Allegheny, and Majocha at the Western Pennsylvania School for the Deaf and Plum Borough School District and then Gallaudet University.
Those supportive environments, while comfortable, made the issues they faced later more surprising.
“Spaces that provide a lot of support don’t prepare you for what you face when you are out of the bubble,” Power said.
According to the National Center for Education Statistics, 19.4 percent of undergraduate students and nearly 12 percent of graduate students reported a disability to their colleges and universities in 2015-16, the most recent year for which data is available.
Locally, percentages are lower, including about 11 percent at Carlow University, 7 percent at Community College of Allegheny County, 6 percent at the University of Pittsburgh and roughly 8 percent at Carnegie Mellon University.
It’s hard to tell if those numbers accurately reflect the population of students with disabilities enrolled in higher education nationally or locally as not all students choose to register with college disability services offices.
The list of disabilities students have reported to colleges is wide-ranging and includes physical disabilities, autism, attention-deficit/hyperactivity disorder (ADHD), learning disabilities, mental health conditions and chronic illnesses. University officials report that mental health conditions are among the most commonly reported and that the number has been growing since the onset of the pandemic.
Advocating for accommodations has been a constant, but largely quiet, struggle for college students with disabilities since the Americans with Disabilities Act became law in 1990 and paved the way for them to be welcomed onto college campuses.
That struggle moved out of the shadows during the past year as the ADA passed the 30-year mark of its enactment while the COVID-19 pandemic disrupted higher education and moved learning to remote settings. The drastic change created new obstacles, not just for students with reported disabilities, but also for some who had not previously been diagnosed or notified their university of a disability.
Suddenly students forced to learn in a new way sought accommodations such as recorded lectures, captioning and extended time for assignments as professors scrambled to learn new technology and new ways of teaching that were less rigid than their pre-pandemic experiences.
Leigh Culley, Director of the office of Disability Resources and Services at the University of Pittsburgh, and her counterparts at other universities, confirmed that moving to remote learning was a big change for students. “To suddenly shift the way you have to learn has been really challenging. It has created some new barriers that hadn’t previously come to light,” Culley said.
(We’ll explore more in-depth the accommodations process for students, including the effects of the COVID-19 pandemic, in a future story in this series.)
For students like Power, the spotlight on accommodations as a result of the pandemic provides a window for other students into the world she and her peers with disabilities live in on a daily basis in postsecondary academia.
“If people came into these things with more of an idea of helping a disabled person in general, we wouldn’t have to use our energy explaining the smallest details,” Power said.
She and other students with disabilities, including Quinn O’Connor, a junior at the University of California, Los Angeles, said they believe if students with disabilities were embraced more often as part of universities’ efforts to recruit and serve marginalized student groups, their needs would move more to the forefront. Too often, they said, inclusion efforts address such groups as minority students, those from low-income backgrounds, English language learners and undocumented students, but not the disabled.
Disability advocacy has come to the forefront on the campuses of the University of California system, where requests for accommodations spiked sharply with the switch to remote learning during the COVID-19 pandemic, said Aiden Arasasingham, president of the University of California Student Association.
O’Connor, who is a theater major and disability studies minor, has cerebral palsy. She is the co-founder of the Disability Student Union on her campus and pointed to a January UCLA press release boasting of, “significant growth in the racial, ethnic, socioeconomic and geographic diversity.” The headline said that UCLA saw a, “surge in applicants from underrepresented backgrounds.”
“They reported record numbers of Black, brown, Asian, Indigenous students. Disabled students are not included on that list,” O’Connor said. “The result is that students with disabilities can’t thrive and get that equitable education that we all apply to UCLA for.”
Megan Majocha is a research fellow at a National Institutes of Health lab.
Managing the system
Majocha and Power shared their stories of self-advocacy and struggle for access in order for others to understand the difficulties of navigating higher education for those with disabilities.
Majocha recently granted this reporter interviews via Zoom — with the use of ASL interpreters — from Washington, D.C., where she is currently enrolled in a PhD program at Georgetown University and is a research fellow at a National Institutes of Health lab working on breast cancer research. Both institutions have provided her with the interpreting services she needs.
Majocha said she has remained friends with the staff of the Magee lab where she was an intern and has shared advice on how to make it more welcoming for deaf researchers. But, she said, her experience there has remained with her as a reminder to be a determined and proactive advocate for herself.
The experience also prompted Majocha, along with three other students, to write a research paper titled: “Everyone Was Nice… But I Was Still Left Out: An Interview Study About Deaf Interns’ Research Experiences in STEM."
Majocha described the Magee experience in her recent interviews.
“I was the only deaf person there. The PI (principal investigator) was talking and I was trying to read lips for the entire meeting. That was really difficult. It was science and there was a lot of terminology and I didn’t know what it meant and that’s when I knew I was really behind,” she said of her experience without an interpreter.
She said she asked for an interpreter about three weeks before the internship started. One was available on the first day. But after that, she had an interpreter for one hour each day when a guest speaker presented. In addition, she received interpreters for an additional two hours twice a week.
It was a stark contrast to her experiences in K-12 and at Gallaudet, where she had full-time interpreters.
Majocha tried to pack a lot into those two hours by keeping a list of questions she encountered as she worked. When it wasn’t possible to cover everything during those times, she put her questions into emails or handed sticky notes with questions to others in the lab.
“I was really lucky to have a lab assistant who was good at gesturing. But it still wasn’t full access. It wasn’t easy. It really does put a lot of stress into your life,” Majocha said.
At Georgetown she was firm with school officials about the accommodations she needed.
“I was very lucky because Georgetown never pushed back on having an interpreter 9-to-5 every single day even though my classes are sometimes only two hours for that day. I requested them to be on call because last minute meetings would come up or I would have lab time and sometimes I just wanted to interact and network with other students in my program. Georgetown never questioned that. They were able to set up the services,” Majocha said.
Her field made it even more difficult to find suitable interpreters. “It was difficult to find interpreters who were available to me who also knew science.” Majocha said.
But after networking with others she found appropriate interpreters.
The NIH lab where she is a research fellow is also extraordinarily accommodating, she said.
Majocha started there as a post-baccalaureate fellow upon graduation from Gallaudet. The lab was recommended to her because the principal investigator and others knew ASL. Currently, she said, there are five deaf researchers in the lab.
“Because of this incredible lab environment, I decided to continue my PhD program in this very lab,” Majocha said.
Ups and Downs
Power’s journey through higher education has had multiple bumps in the road.
She got through her freshman biology lab the same way she worked through science labs in high school — by finding friendly lab partners who walked her vicariously through the steps of the lab procedures, making sure she knew the processes and outcomes.
“The other kids caught on that in real time I needed to understand what I was doing. It was probably the best lab group I have ever had,” Power said of her Edinboro lab partners.
She also visited the professor frequently during office hours to ask questions.
The sting of the professor’s initial response to her presence in the lab freshman year prompted her to abandon thoughts about the biology major she had hoped to use for a career in public health. She switched to sociology, where she found professors who were more accommodating, with whom she connected on a personal level, and where she felt respected. She was also drawn to sociology because it encompasses marginalized groups.
After completing the freshman biology class, Power said the remainder of her time at Edinboro was a positive experience.
Edinboro is designed as an accessible campus. She attended at a time when it provided personal aides for students with disabilities, along with a shuttle service for students to be transported around campus and to some off-campus locations.
(Two years after Power graduated a change in the way the government provided funding caused the university to end the program that provided the personal care aides)
Edniboro’s Academic Accessibility Services office (called the Office for Students with Disabilities when she attended) helped Power with her academic accommodations. “They had homework aides and peer advisors. Aides were your hands if you couldn’t write or type. Peer advisors would help you get organized,” Power said.
The van service was handy because “it snows buckets in Edinboro” making it difficult for those, like Power, who use wheelchairs.
“Edinboro was a wonderful school and I learned so much about what it would take to manage my life in the world as a person with a disability,” she said.
After graduation, Power was able to complete a three-month summer 2018 internship in Washington D.C. through the American Association of People with Disabilities. Through the internship, she worked at the United Spinal Association advocating for people with spinal cord injuries.
Following the internship, she entered graduate school at the University of Pennsylvania.
Power’s excitement about attending the Ivy League university quickly diminished as she found herself spending too much of her time and energy fighting for academic and housing accommodations. Making her way around campus, she found accessible entrances were sometimes blocked.
“For instance, I went to a meeting of an organization I joined and I couldn’t find the ramp to get into the building. I asked someone and they said, ‘Oh yeah, it’s behind that car.’ Someone had parked the university van right in front of the ramp,” Power said.
In her epidemiology class, material moved too quickly for her to process so she requested permission to record lectures, a request she said was initially met with resistance by the professor. After negotiations, she was given permission to record after signing a document saying the recordings were only for her personal use and not to be shared.
Power acknowledged that she arrived on campus fatigued from her summer internship, but she did not anticipate expending so much energy just to get the accommodations she needed.
Adding to her fatigue was the fact that she was assigned an apartment with a bathroom too small to adequately accommodate her and her wheelchair, causing some injuries to her. And, her night-time aides, who she hired through a private agency, were not always reliable.
“The thing about Penn was … it was like ‘we are more than willing to accommodate you but we don’t know how to do it,’” Power said.
“But explaining all of what you need, that’s on you, in addition to adjusting to all of the other stuff. Especially when I’m tired from working on school and then I have to save my energy to transfer from a chair to a bed. Between the physical stuff and the mental drain of the actual school and the mental drain of the accommodations, it’s very difficult.”
Power successfully finished her semester at Penn. But she took off the spring and summer to rest and rebuild her stamina.
In response to Power’s description of her experience, Penn’s University Life Division issued this statement:
“The University of Pennsylvania offers comprehensive accommodations, resources, and support for students with disabilities. Staff and faculty are committed to meeting each student’s unique needs.”
In the fall of 2019, Power started work on a master’s degree in sociology at Indiana University of Pennsylvania, where she commuted to classes from her Wexford home one night a week with a friend of the family hired as her driver.
She uses audiobooks for her texts and uses voice-to-text software to write papers. Sometimes her personal aides type for her.
Since March 2020 when COVID-19 forced all classes online, Power has missed interaction with her classmates and professors and the family friend who used to drive her to classes. But she has had no academic difficulties learning and working online.
“Most of my difficulties have been social,” she said.
She hopes to graduate in December and to work in an advocacy position.
“Ideally, I want to work at the local government level on policy development issues related to the disability community,” she said. “This type of position would allow me to use both my formal education and advocacy training to seek to enhance the lives of disabled people.” ✹
This story was made possible through a fellowship from the Education Writers Association.
Mary Niederberger covers education for the Pittsburgh Institute of Nonprofit Journalism. She can be reached at firstname.lastname@example.org.
Edited and Produced by Brittany Hailer. She can be reached at email@example.com.
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