How A Traumatic Brain Injury Shaped Emily Tarconish’s Mission for Disability Advocacy
by Tom Hanlon / Sep 11, 2023
She thought she knew where she was headed with her career. A severe accident changed all of that. Now, she's on a path to ensure that people with disabilities have advocates in the classroom and beyond.
Emily Tarconish always wanted to be a teacher. Her parents were both high school teachers. She figured she’d follow in her mother’s footsteps and teach English.
And then the car accident happened. She was a passenger in a car her dad was driving less than a mile from home.
She was 15 when the impact of the crash caused her to fly out of the car and land head-first on the road. That she survived at all was a miracle.
“I have no memory of the accident,” says Tarconish, now beginning her third year as a teaching assistant professor in the College of Education’s Special Education Department. “My memories of the next year are also vague due to post-traumatic and short-term amnesia.”
She was in a coma for nine days after the accident. She had experienced a severe traumatic brain injury.
According to the Centers for Disease Control and Prevention, 30% of people who experience a traumatic brain injury become worse within five years. Twenty-two percent die. Another 22% stay the same.
Not great odds.
Tarconish was among the lucky ones. Likely, her effervescent personality and positive attitude helped in her recovery. She’s a fighter.
Which is good because it has been a long recovery.
“When I woke up from the coma,” she says, “I was like a baby in a fifteen-year-old body. I had to relearn everything—how to walk, how to speak, how to read, how to be around people. The injury has had lifelong effects on my abilities.”
Rebuilding and Adapting
It has been 22 years since the accident turned Tarconish’s life upside down. However, "recovery” doesn’t accurately capture brain injury rehabilitation. “For other types of injuries, people aim to recover previous function. After a brain injury, of course, one has to regain basic functions. Still, much of rehabilitation is taking time to understand your new brain, recognize areas that may be permanently changed, and develop mechanisms to compensate for them.”
Tarconish experienced changes to her cognitive abilities, including short-term memory, concentration, and processing speed. “I need to plan in extra time to complete tasks, breaks to avoid cognitive or physical fatigue, and that's just what it takes,” she says. She also experiences long-term memory loss.
Long-term memory loss, or “retrograde amnesia,” involves losing access to long-term memories formed before injury. She doesn’t recall personal memories from before the accident or what she learned in the first ten years of education. “I'll find myself reading classics like Lord of the Flies or Catcher in the Rye, and it's like the first time for me,” she says. “I'll also hop on Khan Academy and watch videos to learn about the basics of world history or biology. I’m constantly doing catch-up work to fill in the background or the basics of what I’m doing.”
She hopes to model self-acceptance and the need to be flexible and adaptable for students with disabilities. “I've come to fully embrace that I'm neurodiverse and that thinking and learning take longer,” she says. Tarconish acknowledges that self-acceptance contrasts commonly upheld deficit views of disability. “Disability is often positioned as a negative, and being able-bodied or neurotypical is the positive,” she explains. “People with disabilities are pushed to learn or act in the same way as people without disabilities, and in cases of acquired disability, the purpose of rehabilitation is couched in ‘returning to normal,’ or function before the disability. My brain injury changed most aspects of my life. It took some time, but I accept my abilities and needs and realize how crucial it is for environments to be accessible and accommodating.”
Pushing on With Her Dream
Her injury didn’t derail her aspirations to become an educator. But it did shift her perspectives on education.
“The first step to creating accessible education systems and communities is to create platforms for disabled people to share where barriers exist,” Tarconish said. “This is a particular need in postsecondary education.”
This mindset was born from her own experiences in postsecondary education. She attended Penn State University to obtain a bachelor’s and master’s degree and later completed a Ph.D. in educational psychology from the University of Connecticut. For most of this education, however, she did not use disability services.
At Penn State, she says, “I didn’t know disability services existed. And I didn’t even know that a brain injury counted as a disability! Back then, I was embarrassed I wasn’t learning as fast as my peers, that I had to sleep more, that I had to see specialists on a regular basis.”
It wasn’t until her master’s program in rehabilitation counseling at Penn State that she realized brain injury was considered a disability. “My mind was blown that I could have gotten services and there were accommodations that could help people like me!” she recalls. “That’s when the drive in me to make sure that people know about disability services began.”
Many times, she says, postsecondary students with disabilities don’t realize that they have a disability because they assume services are for specific students only, such as those who use wheelchairs or have learning disabilities. Even if students are aware of their disabilities, many don’t know that services are available.
“Disability is not a dirty word!”
Tarconish’s mission is to ensure college students have spaces to discuss their experiences with disabilities and are aware of available resources.
“My goal is to expand disability awareness as well as increase knowledge of the availability of services,” she says. “Disability should be represented in DEI [diversity, equity, and inclusion] initiatives. It needs to be talked about by everybody. Students with disabilities constitute the largest minority group on college campuses. But most students with disabilities do not access services.”
The biggest reason that students don’t access services, she says, is because the stigma surrounding disability is enormous. The second reason is people don’t know disability services are available.
And that infuriates her.
“Disability is not a dirty word!” she says. “You don’t want people to be embarrassed about it. Just treat it like it is. And say the word: disability. You don’t need to say differently abled or special needs. Disability is just another piece of human variation. It needs to be treated as a piece of diversity, and when we’re not doing that, we’re creating barriers for people.”
Using Research to Remove Barriers
Tarconish is doing her part to remove those barriers, both through the classes she teaches and the research she conducts.
“Teaching future teachers about disability is a big part of every course I teach,” she says. “I also want teachers to know that post-secondary education is an option for every student, from people with ADHD to those with intellectual disabilities. All those people can attend college, and we know that doing so leads to better employment and life outcomes.”
According to the Pew Research Center, 15% of the national public school enrollment in the U.S. has at least one disability. That adds up to 7.3 million students. Research shows that approximately 55% of students with disabilities enroll in postsecondary education, compared to 61% of their peers without disabilities. Additionally, students with disabilities graduate at lower rates than their non-disabled peers.
Tarconish focuses her research on disability in post-secondary education, dividing her time among three “buckets”: undertaking qualitative research with students with disabilities that examines their lived experiences; developing research- and evidence-based practices for access specialists; and developing disability awareness and inclusive teaching and practice trainings. Tarconish’s work shares a common thread. “My research creates spaces for people with disabilities to share their stories and inform the ways we make environments more accessible,” she says.
Leveraging Key Partnerships at Illinois
Tarconish is partnering with DRES (Disability Resources and Educational Services) to study effective practices for postsecondary disability services offices.
“One study I’m running right now examines the DRES coaching programs,” she says. “The research tells us that coaching for college students with disabilities is a highly effective practice, but it doesn’t exist everywhere. DRES has Brian Siemann, an access specialist, who runs a cool program that trains graduate students to be coaches. I’m interviewing students in the program to learn how the coaching affects them and how it helps them develop skills. I’m also collecting data to determine how coaching affects grades and self-assessments of student’s academic skills.”
Tarconish is also conducting a study on how peer support for students with disabilities helps students understand themselves and complements the accommodations they receive. “Most universities have either zero or one club centering around disability; here, we have between five and ten each semester, and it changes on a semester basis, based on student needs,” she says.
A third study explores how career counseling can improve the graduation and employment rates of students with disabilities; both rates are lower than those of their non-disabled peers. DRES offers an innovative career counseling service focused on disability—one of the few schools in the country to do so, Tarconish says.
Creating Training Videos and a National Website
When Tarconish showed DRES training videos she had created at the University of Connecticut to help professors understand how to best work with and help students with disabilities—particularly those with autism, ADHD, anxiety and depression, or traumatic brain injuries—they eagerly asked her to replicate the project.
“We’re currently interviewing students with disabilities and asking them to tell us about their experiences, particularly related to learning,” Tarconish says. “We will build training videos for professors based on these narratives.”
In her previous pilot project, the videos were institution-specific. The new videos will not be.
“We plan to build a website that is available and relevant to any instructor at any institution,” she explains. “These videos will be on the site, and professors can learn about any disability they want.”
While she focused on four disabilities with her previous project, this project is not limited. “I’m going to create a video for any disability that anyone wants to tell me about,” she says. “That’s my big project now, focusing on disability awareness and inclusive teaching.”
Tarconish hopes to have the website running within a year or two and plans to update it regularly. The site will offer videos and guidance on inclusive practices—in the classroom, in the advising office, and in student affairs.
In other words, everywhere that a student with a disability goes.
Educators Need to Be Allies and Advocates
“Ableism is everywhere,” Tarconish says. “The world is inaccessible because it was built by able-bodied people for able-bodied people. This is unfortunately true of our schools, too—especially higher education institutions. Every educator needs to be an ally and an advocate. We need to challenge whenever we see inaccessibility and ableism, and we do this by partnering with people with disabilities.”
Tarconish teaches both future special educators and general educators. Her message remains the same to all students: Don’t view disability as just a “PC” topic. Talk openly about disability. Most people will experience a disability throughout their lives. Fight the stigma that disability is embarrassing and shouldn’t be talked about. Push for accessibility and inclusion.
A Dream, Reshaped
Early in her recovery from her car accident, the 15-year-old Tarconish would often think she was dreaming. After being in the hospital for months, her body had shrunk to 80 pounds, and her brain didn’t function the way it used to.
“Is this a dream, or is this real life?” she kept asking herself.
She slowly realized it was, indeed, real life.
But while her brain injury was indeed severe and traumatic, it did not squelch her dream of being an educator. It simply reshaped it. Now, instead of teaching high school English—a worthy pursuit—she is preparing future students to positively impact the 7.3 million K-12 students who have a disability and to build accessible higher education environments.
There certainly is no one more qualified than Tarconish to do so.