What advice would you give to aspiring scientists and/or scientists with disabilities?
“Pursue your dream and be very prepared to advocate for yourself. Someday, I hope my answer is to just pursue your dream, but at this point, disabled scientists especially, are going to need a strong network of support. I would be happy to be that person for anyone who needs it.”
Climbing up the side of an Arizona desert hillside, Sally Joey Ramp discovered a dilapidated adobe building overlooking a ravine. After crawling in with the aid of her service dog, Sampson, they both sat in an open window for hours, “just feeling the breeze and smelling the desert,” she says. She thought about the serendipity of her life and the paths she never would have imagined she’d trek. Sampson’s tail wagged as he sat beside her. She thought about her horsing accident in 2006 in her mid-forties: a brief flash, and suddenly, fractured vertebrae and facial bones, a traumatic brain injury (TBI), the loss of cognitive and language skills, and a diagnosis of post-traumatic stress disorder (PTSD). She thought, too, about how many people she has helped since then as a leader of her consulting firm Empower Ability Consulting, LLC, and a neuroscience research affiliate in Dr. Justin S. Rhodes’ laboratory at the University of Illinois studying the neurobiology of PTSD and TBI. But, boy, was getting here not easy, she thought to herself, chuckling into the desert breeze.
Growing up, Joey did not have a clear path into science. In fact, she wasn’t even looking in that direction. She grew up in Florida and Texas surrounded by polo horses that she trained. When wondering what to do with her life, she knew her strongest skill sets were in negotiation and leading, so she decided to go into business. She rose the corporate ladder and for years was the Chief Executive of Research and Development for a multi-million-dollar company. She thrived in that fast-paced environment. After her accident, however, all was put to a halt. Faced with a long, difficult recovery, she was forced to reconsider her entire life. She decided at that point, because she wasn’t receiving any clear answers from the medical community about her brain injury, to “study neuroscience and figure out what was happening in my own brain,” she says. In recovery from a TBI in her mid-forties, Joey decided to go back to college to get her degree in neuroscience.
“[I decided to] study neuroscience and figure out what was happening in my own brain.”
With her service dog in tow, however, she received a great deal of push-back from the undergraduate community at the University of Illinois when she declared she was going into science. Nobody wanted a dog in their research lab. And people, faculty and colleagues included, kept telling her that because she was disabled, she wouldn’t make it in science. “I was really pushed to leave STEM,” she says. “No one was looking at what I wanted to do, why I wanted to do it, what my passion was, or why I was going to school in the first place.” Meetings would happen behind closed doors about how to deal with her disability, but because she was an undergraduate student at the time, she was not allowed in those meetings to advocate for herself. From the very beginning, she had to figure out how to fight for her place.
“They [STEM faculty and administrators] put their own limitations on people with disabilities, without understanding what they were capable of, looking beyond the stigma, or beyond what their own implicit bias was.”
When asked why she thought she was denied access to a lab with her service dog so staunchly, she replied that the current culture of “STEM faculty and administrators is that they put their own limitations on people with disabilities, without understanding what they were capable of, looking beyond the stigma, or beyond what their own implicit bias was.” She notes that she was told directly by administrators: “people with disabilities can’t compete.” Even if a complaint is filed with the Office of Civil Rights (OCR), an entity of the U.S. Department of Education, administrators often deny students their requests for accommodations and deny their access to labs, saying that no one yet understands the science of whether these students can truly thrive in these lab environments. “Scientists are the ones presenting the discrimination and the barriers,” she says. “But they are also the ones being deferred to by the OCR to make the decision that they’ve already made.” This becomes a circuitous pattern that systemically excludes the individuals trying to advocate for themselves.
To ensure that future students with disabilities would not go through the same experiences, she started her own consulting company in 2018 called Empower Ability Consulting, LLC. Her main goal is to provide equal opportunities for students with disabilities, and develop solutions for the students and institutions so that they can work together. In practice, this means that she is starting the conversation. She takes what it is the students say they need as a disabled scientist and meets with administrators to get policies in place to accommodate that student. She outlines clearly how exactly the institution can support the student. She speaks of her personal experience and gives these students a voice. Instead of being excluded from spaces now, students can get what they need to succeed, and Joey ensures that future individuals will not confront the same barriers. Now, she gets to lead meetings from which she was previously excluded. Her main approach is top-down, as she knows that changing the minds of scientists and faculty will trickle down to students coming into these programs. “I get feedback from faculty members saying that this touched them on a visceral level,” she says. “When you can touch science academics on a visceral level, you know you’ve made a change.”
She credits many people in helping her navigate the difficulties of college up to when she graduated in 2019, including her very first science professor, Dr. Andrew Holmes of Parkland Community College, during her undergraduate career who worked with her to ensure her service dog would be safe in the lab. Her disability access director at the University of Illinois attended every single one of her meetings with professors each semester to discuss her accommodations. “I met with him twice a week and he was there with me through the whole process,” she says. But the strongest supporter was and still is her current mentor, Dr. Justin Rhodes, an Associate Professor at the University of Illinois.
Dr. Rhodes was pivotal in guiding Joey when no one wanted to work with her because of their fears of having a service dog in the lab. Joey’s previous professors felt strongly that Sampson would affect the behavior of the laboratory rats, and absolutely would not allow him in the lab. But, she realized, there was no scientific study to prove this theory. Joey decided to submit a protocol to systematically test whether service dogs changed a rodent’s physiology and behavior. She got $50,000 from Disability Services to conduct this study, and Dr. Rhodes was the only professor who wanted to work with her to uncover the truth. However, the Institutional Animal Care and Use Committee (IACUC) denied her protocol time and time again for 2 years. Dismayed, she never got to conduct that study, and needed to give back the research funding. “To this day, our lab is contacted by others asking for that data because they have students, and we unfortunately cannot provide them with it because we were unable to run that research,” she says. Dr. Rhodes was a loud voice advocating for it, even putting his career on the line to fight for it. Now, with a neuroscience degree under her belt, Joey studies early-life adversity and how a brain injury contributes to PTSD symptoms. Ultimately, she plans to eventually take a more managerial role in the lab.
“[My service dog] keeps me working, able to be social, and stable, just by those tiny little things that he does.”
As Joey describes the rodent and service dog research projects, two of her son’s Dachshunds bark raucously outside her door. Something in her shifts. Though focusing on her words, she starts rubbing her hands; suddenly, a wagging tail comes into view. It was Sampson, doing his job. He was performing what Joey describes as one of Sampson’s main tasks: medical alert. Joey’s nervous system can go into overdrive, and environmental stimuli that are loud or distracting can upset her nervous system without her being aware of it, which can potentially lead to a medical emergency and up to 10 days of recovery. Sampson, when not in lab, nudges her to be aware and take stock of her environment, and she is able to recalibrate. In lab, because he is in his personal protective equipment, instead of nudging, he sits up straight and grabs a ribbon located on his collar. Sampson’s other main job is balance and brace, or being a support when Joey needs to bend down, a task that could cause her to pass out. “He keeps me working, able to be social, and stable, just by those tiny little things that he does,” she says. “He is absolutely amazing.” Sampson also manages a social media account as the well-known Sampson the Service Dog. Above all, he is a good boy.
While Joey stresses the importance of ensuring that both the handler and the dog are safe in the lab environment. This includes being prepared for emergencies and being fully trained not to be disruptive, in which case faculty are allowed to ask them to leave. Any bad experience, too, can contribute to the stigma against service dogs that can cause problems for well-trained service dogs in the future. “With the rise of service dogs being placed for disabilities, the likelihood that we’ll see them in our communities, on campuses, and in STEM, is high,” she says. “So, to get guidelines in place is going to be very important.”
“With the rise of service dogs being placed for disabilities, the likelihood that we’ll see them in our communities, on campuses, and in STEM, is high.”
When asked to describe her identity, Joey at first pauses. “I am a disabled person,” she says. It is confident. Her view on her identity is different from the current conversation surrounding persons with disabilities. People have corrected her in the past for saying “disabled person” and not “person with a disability.” She says it is in fact her own decision on what to call herself. “I am a disabled person, scientist, and company owner, because the disability makes me better at what I do, makes me a stronger, better person, and has changed the way I see the world,” she says. “I see the world with more compassion and empathy, more kindness… It’s become a part of me that I’m actually very proud of.” To Joey, this translates to how she views diversity in science. “People from all different backgrounds can bring… different perspectives, unique ideas, and more creativity in different challenges in research,” she says.
“I am a disabled person, scientist, and company owner… I see the world with more compassion and empathy… It’s become a part of me that I’m actually very proud of.”
What ultimately keeps Joey motivated in her life are the many lives she’s touched along her journey. “I had one combat veteran who was so defeated and was going to quit [school], and I worked with them extensively,” she says. “The last time I saw them was when they graduated, and from across the room, they held up their diploma and smiled.” She told many such stories, each filled with resistance and frustration, transformation and success. Though a self-described workaholic, she knows how to take time off and have adventures. “I love life,” she enthusiastically proclaims. Her verve for life is palpable. In her time off, she paints, hangs out with her paramedic / firefighter son, and goes hiking, climbing, or canyoneering to stay active. Yet, even when relaxing, she spends a lot of time reflecting on how to make the biggest impact on budding scientists. “Even if I’m on a trail, I’m thinking about that. Where the gaps are, what needs to be filled, how education… and awareness needs to happen,” she says. “I hope to make a difference to make [science] more inclusive, accessible, and welcoming.” And she will do that; with, of course, Sampson faithfully advocating by her side.
by Josephine McGowan