RISE-ing Above: Embracing Physical Disability in the Lab

This is the fourth post in a new series highlighting NIGMS’ efforts toward developing a robust, diverse and well-trained scientific workforce.

Marina Z. Nakhla
Hometown: West Los Angeles, California
Blogs For: Ottobock “Life in Motion,” a forum for the amputee community, where she’s covered topics ranging from medical insurance to dating.
Influential Book: The Catcher in the Rye by J.D. Salinger
Favorite TV Show: Grey’s Anatomy
Languages: English and Arabic
Unusual Fact: Gets a new pair of legs every year or two

Nakhla at her graduation from California State University, Northridge, where she graduated with a B.A. in psychology with honors. She is currently a second-year master’s student there studying clinical psychology. Credit: Christina Nakhla.

When Marina Z. Nakhla was just a toddler, she lost both of her legs. Now 22 and a graduate student at California State University, Northridge (CSUN), she has hurdled obstacles most of us never face.

Nakhla conducts research to better understand the decrease in mental abilities experienced by people with brain diseases. She is a scholar in CSUN’s Research Initiative for Scientific Enhancement (RISE) Program. This training program aims to enrich and diversify the pool of future biomedical researchers. Her long-term goal is to earn a Ph.D., to work as a clinical psychologist and to continue conducting research in neuropsychology. Along the way, she aspires to be a leader to her peers and an advocate for underrepresented people, particularly those with disabilities.

I first learned about Nakhla from an email message titled “CSUN RISE Student.” The acronym, pronounced “see [the] sun rise,” is an apt motto for a program that prepares students for a bright future in science. I believe it also encapsulates Nakhla’s positive, forward-looking mindset, despite the obstacles she has faced. Here’s her story:

Q: What got you interested in science?

A: Growing up, I was always drawn to science. I enjoyed learning how things work. I first became interested in psychology after reading The Catcher in the Rye in high school. I was so intrigued by Holden Caulfield’s thought processes and experiences of alienation and depression, despite the fact that he came from a wealthy family and went to a good school.

Why are some people more prone to experiencing depression? Why are some peoples’ thought processes so different than others? What factors contribute to resiliency? How can we help these people? These questions also made me think about the significant adversities that I had personally experienced. My desire to know more about the brain, as well as my personal experiences, instilled my passion to make a difference in others’ lives through science.

When I started doing research, my mentor inspired my interest on the medical side—in neuropsychology, which is a subspecialty within clinical psychology. Neuropsychology is the study of brain and behavior, which includes how damage to the brain affects cognitive, daily and psychological functioning. There’s so much we don’t know!

Q: What research are you doing now?

A: My main research at CSUN focuses on people with Alzheimer’s disease and those with mild cognitive impairment. People with mild cognitive impairment do not meet clinical diagnosis for Alzheimer’s or other dementia, but they do have trouble thinking, remembering and planning. They may also struggle to perform some routine daily activities such as shopping, managing transportation needs and handling finances. And the condition gets worse for most people over time.

We hope that our studies will add to the knowledge needed to more accurately diagnose early stages of dementia. Early diagnosis would help healthcare providers plan treatment options and work with the patient and the family.

One question we’re trying to answer is whether performance on standardized memory tests can help with early diagnosis. I’m comparing different types of memory tests on people who have mild cognitive impairment. We’re trying to see whether any of these tests can predict how well these people perform the routine activities of daily life. More specifically, we want to learn if disruption to different memory systems in these people predicts their ability to perform activities.

I’m looking at two types of memory tests—one that evaluates accumulated knowledge (semantic memory) and one that measures information learned during a particular time period (episodic memory). So far, I have found that, for the most part, episodic and semantic memory deficits reflect similar impairment in activities of daily living. This link holds true for both Alzheimer’s patients and those with mild cognitive impairment.

This summer I’m also in the Summer Training Academy for Research Success (STARS) program at the University of California, San Diego. The lab where I’m working focuses on bipolar disorder. People with bipolar disorder have unusual shifts in mood, energy levels and sleeping patterns. There’s some evidence that they are also at risk for premature and accelerated aging.

This lab is investigating whether factors such as inflammation, mood variability and sleep quality contribute to cognitive impairment in bipolar disease and possibly to accelerated aging. My specific project is investigating the relationship between inflammation and attentional performance, and whether altered sleep patterns play any role.

Q: You said you want to continue studying neuropsychology. Is there a particular topic you’d like to explore?

A: I want to take all the experiences I’ve had and apply them to my future research. Generally speaking, I would like to study the intersection of physical disability, neuropsychological disorders and mental health. I’m interested in Alzheimer’s disease, mild cognitive impairment and brain aging in general. More recently, I became interested in traumatic brain injury.

In the future, I’d like to explore the impact of these conditions on people with disabilities and compare it to the effect on people without physical disabilities. Do cognitive deficits have a greater impact on people with disabilities? Or is the impact less because such people already face restrictions in their daily activities? Or maybe there’s no difference. I’d like to find out.

Q: You’ve written openly about your own disability. Would you tell us a bit about it?

Nakhla keeps fit in the gym, where she has been told by others that she is an inspiration to them. Credit: Marina Nakhla.

A: Sure. When I was born, each of my legs was missing its tibia bone. This is the larger of the two bones that runs between the knee and the ankle. Without this bone, my feet would never be able to support my weight.

Doctors told my parents there were only two options: I could get around in a wheelchair or on artificial legs. My parents chose surgery in order to give me the chance to walk. So, at the age of 14 months, both of my legs were amputated above the knee. I’ve been wearing prosthetic legs since then. Also, I have four fingers on my left hand and three on my right hand, but both hands function normally.

Q: How has this disability affected you?

Being an amputee has impacted all aspects of my life. School, especially the early years, was very difficult. When I was in preschool, I was placed in a special education class. Apparently, some people think physically disabled people are also intellectually disabled. I had to wait an entire year before my teachers realized their mistake and moved me into a regular class.

As I progressed in school, I faced other challenges. People would make fun of me, make indirect comments or be hostile because they assumed I was receiving special privileges. I also had to miss school sometimes for doctor’s appointments, leg fittings and physical therapy sessions.

Fortunately, my teachers and the school staff were very supportive of me, both in school and outside of it. The public school system hired a personal assistant who came with me to all my classes, carried my bags and helped with activities such as cutting and gluing that I struggled with. And my family has always been extremely supportive. They attended all my school-related events, comforted me when I was sad and defended me when people bullied me.

Every day I face different obstacles. But my struggles have taught me so much—time management skills, resilience and appreciation for little things that others might take for granted. Having a disability has also taught me to be strong, hard-working and persistent. In fact, I feel that being an amputee means that I have to work twice as hard as anyone else.

Q: Do you have any advice for someone who has a disability and is interested in a career in science?

A: Yes, and I’ve written about this in various places . These lessons are valuable not only for people with disabilities, but also for people without disabilities who want to promote a culture of inclusion.

The most important take-away message is to pursue your passion. Do what you love. I really love what I do.

Second, never shy away from asking for help. You might need someone to carry something for you, or you might need a microscope or other research equipment that has been modified to make it accessible to you. More technologies and accommodations are available now than ever before. There is no shame in receiving them. They make it possible for people with disabilities to engage in work alongside their peers.

I drive a car that has been modified. I use a hand control for the accelerator and brake, and a spinner knob to make turns with one hand. I don’t have many accessibility issues in my lab because I don’t regularly use specialized research equipment. But I do struggle with reorganizing drawers and carrying heavy testing kits. When I test participants, I ask a lab partner to carry the kit. I also do my best to be a team player. When the lab needs to be organized, I make sure to do it with the others. My colleagues have made it easier for me to ask for help because they accept me as I am and don’t look down on me.

Third, choose your mentor wisely. It is extremely important to have a mentor who is willing to work with you and will support advocacy for inclusion. You will be working very closely with this person and you want to have a relationship built on mutual trust and respect. Try to get to know potential advisors before selecting a mentor. Ask about their mentorship style, their knowledge of disability services, their willingness to find and obtain accommodations, their understanding of disability culture, and anything else that will help you assess whether the advisor and his or her lab would be a good fit.

Fortunately, I have had amazing mentors who have provided me with endless support and kindness. They’ve informed me of research opportunities and scholarships available to me as an underrepresented person in science, and have advocated for my acceptance into these programs. I’d encourage students to take advantage of all the opportunities you are offered. One opportunity opens doors to others.

Finally, address discrimination head on. People with disabilities face negative stereotypes and attitudes that can limit their success. We must all work together to educate the public and conquer misconceptions about what scientists look like, how they learn and how they work. Disability, like race, gender or sexual orientation, is something that gives people a unique perspective. It shapes how people experience their lives and can play a significant role in a person’s values or career choice. Disability should be considered a part of the broader goal of diversity and inclusion that we are trying to encourage. All people should have an equal opportunity to chase their dream, even if they need assistive technology to do so.

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