Attention Hopkins Community! Please vote for EASM’s Diversity Innovation Grant for an Alumni Network Here!

Project Description :

2% of students in the School of Medicine (SOM) register with Student Disability Services, yet 25% of graduate students in the SOM who completed a recent Graduate Student Association survey identify as having a disability, mental health disorder, or chronic illness. Students with disabilities may be inherently less able to advocate for themselves than other types of underrepresented groups due to the nature of their disability. They may experience tremendous fatigue or face a power imbalance when superiors finance their accommodations. These students also juggle extra obligations, like scheduling doctor’s appointments and managing health insurance. Additionally, students with disabilities may fear disclosure because of concerns about judgment, bias, discrimination, future career prospects, licensing, clinical privileges, and skewed perception of ability. As a result, some students with disabilities suffer in silence instead of seeking help.

Lack of disclosure places Hopkins in a difficult position – students can’t be forced to reveal their conditions, but they also can’t be offered support if they don’t ask for help. Disability is infrequently included in diversity and inclusion initiatives, and students with disabilities may feel like they are invisible. We believe that Hopkins must prioritize creating an environment that welcomes people of all identities and abilities and celebrates disability as a valuable type of diversity. This may help students feel safe to disclose their conditions.

We propose the establishment of the Equal Access in Science and Medicine Student-Alumni Network to address these inequities and provide resources and support for students with disabilities. The depth and breadth of expertises and the diversity of perspectives among Hopkins students and alumni makes us uniquely poised to establish innovative and interdisciplinary approaches that could reduce inequities for persons with disabilities both within and outside of the University.

In alignment with the principles outlined in the Roadmap for Diversity, Equity, and Inclusion, the Equal Access in Science and Medicine Student-Alumni Network will create opportunities for robust engagement between individuals with diverse viewpoints and promote deep consideration of challenges faced by scientists and medical professionals with disabilities. We will first work with Student Disability Services and the Johns Hopkins Disability Health Research Center to identify and contact Hopkins students and alumni with disabilities from the SOM, School of Public Health (SPH) and School of Nursing (SON).

Alumni and students with disabilities will be invited to:

Join a Slack channel that will serve as a hub for students and alumni interactions: We will establish a Slack channel to connect students and alumni and enable the exchange of information and ideas about ongoing disability initiatives and research. We will also promote sharing of perspectives on disability from across Johns Hopkins and the biomedical workforce.

Complete a survey that will be used to match students with an alumni mentor: We will send a survey to students and alumni with disabilities that will be used to match mentor-mentee pairs based on career interest and disability characteristics. Alumni mentors and student mentees will be introduced via email with suggested starting points for conversation. Students and alumni mentors will be expected to maintain the relationship independently, however, if a student is not satisfied with their mentor, we will work with them to identify a new, more suitable one.

Participate in two alumni career panels: We will feature alumni with diverse career and disability experiences from the SOM, SPH, and SON in two, 1.5 hour alumni career panels. These events will focus on the disability-related experiences of Hopkins alumni in their careers, as well as strategies to remove barriers to access and promote inclusion of individuals with disabilities in science and medicine. We will spend the first hour of the panel asking both prepared questions and questions that we invite students to submit in advance. Specific points of discussion will include each panelist’s unique career experience with disclosure, accommodations, disability-related challenges, and self-advocacy. The last 30 minutes of the panels will focus on discussions between alumni panelists and student attendees. Students will have the opportunity to ask panel members follow-up questions and share their own experiences.

This network will advance four priority areas for funding:

Faculty diversity and success: Many students with disabilities may consider careers in academia and pursue employment at Johns Hopkins. Furthermore, alumni with disabilities may be faculty members. We hope that the Student-Alumni Network will promote help-seeking behavior among students and faculty and encourage disclosure, which will generate more accurate reports of disability frequency, improve culturally competent care of patients with disabilities, and improve inclusion of faculty with disabilities in decision-making spaces.

Student success: The Student-Alumni Network will provide successful role models to students with disabilities, who may feel isolated or alone in navigating graduate or medical school with a disability. Students will be provided with opportunities to network and form relationships with alumni and other students with disabilities, which may lead to future career opportunities. Additionally, these discourses and events will help reduce stigma around disability and promote students with disabilities as a valuable component of the Hopkins community.

Alumni engagement: Alumni will engage with students through discourse in the Slack channel, one-on-one mentorship, and participation in the career panels. This will provide multiple opportunities for alumni to share their perspectives, form relationships with students, and promote student and alumni success by learning from each other’s experiences.

Training and professional development: Students will hear perspectives and receive mentorship from alumni with diverse career interests and disabilities. This will provide students with information about navigating disclosure, accomodations, and other disability-related challenges when entering the workforce. Additionally, students will be more knowledgeable about resources available to them and strategies that can be utilized to self-advocate throughout their careers.

We are excited to see how this network will unite students and alumni to take on complex issues related to disability, disclosure, and removing institutional barriers to access for scientists and medical professionals with these conditions.

Using The Matrix to explain my chronic pain

Characters from The Matrix franchise dressed in all black and sunglasses

“What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”

-Morpheus, The Matrix

In rewatching the original Matrix trilogy in preparation for the new movie, I was struck by the allegory the first movie made for the experience of disability. The premise of the franchise is that humanity is unknowingly trapped inside a simulated reality created by machines, like being plugged into a computer. I first realized this allegory when the main character Neo, meets with his mentor Morpheus for the first time.

Neo, in the first 45 minutes of the first Matrix movie, has 80 lines, 44 of which are questions. This is exactly what it feels like with the onset of a disability. Your whole life is changed, everything you thought you once knew about your experience of your body and what’s happening to you isn’t true anymore, and you’re confused and overwhelmed, exposed to a whole new reality that you didn’t know could exist.

When Neo meets Morpheus, dumbfounded by the sequence of events unfolding, he asks, “Is this real?” and Morepheus responds, “What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”

“Thank you!” I shouted at the screen. It was a lightbulb moment. Perhaps the biggest stigma and misconception I hear about having an invisible illness like fibromyalgia syndrome is that it’s “not real” or “all in your head.” Not only is this objectively false in addition to invalidating and ableist, but I found Morpheus’s words to be a thought-provoking response– what is real anyway? You might not be able to look at me and see my struggle, but my neurons are sure sending signals that my brain is interpreting as all different kinds of pain and fatigue among many other symptoms, so doesn’t that make it real no matter what? I’m sure feeling it in my body, so that should be enough for others to know that it’s real for me, even if it’s not written all over me. I don’t use a cane, have rashes, have congenital defects, etc but that doesn’t mean there isn’t a pathology going on underneath.

Many people see me having an active Raynaud’s episode, where my fingers go blue or white, and panic about how unsettling it is and if I need medical help when truthfully, it’s superficial, and I go in and out of having Raynaud’s all day long sometimes. It’s annoying at best because the extent of my worst fibromyalgia symptoms is probably just so much worse that my tolerance for things like Raynaud’s is high. What I need people to really be concerned about, my neuropathy, muscular dysfunction, joint problems, cognitive and sleep problems, are not so obvious.

Chronic pain and fatigue seem to be the most widely misunderstood part about this disease. But why? Acute pain and tiredness are something everyone feels in life so they assume they must have some authority on diseases like mine. That couldn’t be farther from the truth. In general, chronic pain and fatigue is not an experience people can understand if they don’t have it. Moreover, in a disease where 90% of patients are female and we already know women’s pain is taken less seriously– the misogyny adds to the stigma. It is literally physically impossible for others to ever experience the depth of what this pain and fatigue feels like unless they have my pathology– unless their neurons are firing improperly like mine.

Before being diagnosed, I thought fibromyalgia was aches and pains here and there, not unyielding, constant severe neuropathic nociception in my hips, in my arms, in my back, in my neck, in my shoulders, in my jaw, in my bladder, in my GI tract, in my esophagus, in my scalp– you forget how many muscles you have that can experience dysfunction until you need them and they’re not working right. I haven’t lived a day without nerve pain since 2012. After many frustrating conversations with people who lack empathy, I learned they don’t understand because it’s not for them to understand. They never will and they never can, unless it happens to them.

Many times over the course of this chronic illness I’ve asked myself things like “Am I crazy?” or “Am I making this up?” just like Neo. All these moments I’ve doubted my experience was the result of conditioning from endless gaslighting by society due to ableism– the same way The Matrix lies to people and presents a false reality. We don’t want to seem like the person who’s always complaining or blame everything on our illness. It’s confusing for even me, a fibromyalgia veteran of 10 years, sometimes to tease apart what’s happening to me in the moment and why. But the truth is, a chronic illness is called chronic for a reason– it never goes away, never rests, and doesn’t care what plans you have, work deadlines are coming up, or what holiday it is. I am dealing with it 24/7/365.

In the franchise, they say that whatever happens to you in the Matrix, your body makes real. People diminish fibromyalgia as “all in your head” because “you’re just depressed” and that’s causing fibromyalgia symptoms. Sure, my anxiety or depression worsens my experience of my chronic pain and fatigue, but that doesn’t make it any less valid– in fact, just like the Matrix, my body is making it “real”. I’d also be more concerned that there are so many triggers for symptoms all the way down to stress and mood instead of using that as a reason to dismiss it.

So the next time you doubt your own experience of your body, a doctor questions how serious your pain is (especially as a woman), or your symptoms go ignored, forgotten, or gaslit by coworkers and family members, remember this lesson from Morpheus: what your brain is telling you you’re feeling, is the only thing that matters, and it should be taken seriously.

We held a disability-themed Wikipedia Edit-a-thon on International Day of People with Disabilities, Dec. 3, 2021

A flyer for the Wikipedia Edit-a-thon event for disabled scientists that took place Dec. 3, 2021 held to increase inclusion and representation of people with disabilities in science and medicine

This past Dec. 3, 2021 EASM held its first annual Wikipedia Edit-a-thon in conjunction with 500 Women Scientists and sponsored by the Disability Health Research Center. Read more about it HERE in the Hopkins News-Letter and read some quote excerpts below about the event (and be sure to be on the lookout for the return of this event next year).

“The thing that a lot of people with disabilities generally in academia struggle with is having a sense of community. Almost everyone that I talk to, that’s like their number one complaint, and I think that this [event] is something where we can show all of the people that exist in our field who we can feel connected to and have that sense of belonging that everyone feels is missing right now.” -Erica Avery, co-organizer

“Working together, creating these pages, doing these action-oriented things to help increase representation of disabled scientists and clinicians in STEM — I want to see that bring our community closer together.” -Nicole Pannullo, co-organizer

“The edit-a-thon showing us that there are role models in the field and bringing that into Hopkins as a workshop may make more staff and faculty willing to be more communicative about their own struggles and their own disability.” -Nicole Vigiano, co-organizer.

“This [event] is a really great way for us to celebrate people with disabilities and to create these Wikipedias to show that there are a lot of successful scientists and clinicians out there with disabilities and that these people can serve as positive role models and inspirations for people with disabilities who may not be sure if they belong in science or medicine when they do.” -Nicole Pannullo, co-organizer.

“I hope that when a little kid who has some kind of disability and their parent google ‘disabilities’ or ‘someone in STEM with disabilities,’ we can make something pop up.” -Nicole Vigiano, co-organizer

“We want to normalize having a disability in the workforce and really reiterate that we’re everywhere; we’re all around you and you just don’t know it. So when you go to read that book or look up this famous person, that you can see that in addition to having all of the success they’ve had, they also have a disability,” she said. “Hopefully the people participating and writing can take solace in knowing that they are providing that for a greater community than just ourselves.”-Erica Avery, co-organizer

Erica Avery wins National Disability Employment Awareness Month Achiever’s Award!

Click Here to read about Erica’s award announcement

Erica Avery maintains a leadership position in Equal Access in Science and Medicine Committee, an organization dedicated to students with disabilities at the schools on the
East Baltimore campus. The group has held book clubs, documentary watch parties, social events, a celebration for the 30th Anniversary of the Americans with Disabilities Act, and seminar series given by disabled researchers. In addition, they were recently awarded a “JH Needs U” COVID-19 Well-Being Grant from University Health Services Wellness, allowing them to hold a two-day panel discussion event with a variety of students who are disabled to discuss with the Johns Hopkins community how their education, research, and everyday lives have been impacted by COVID-19. Subsequently, Erica was asked by the dean of biomedical graduate education to present the summary and conclusions from this event to the masters/Ph.D. committee to discuss improvements in accessibility and accommodations for students. The committee is established under the Graduate Student Association, and as such Erica is responsible for working closely with the association, speaking to the student community at meetings and listening to questions and concerns. She works closely in collaboration with disability coordinators and Homewood’s Students Disability Justice Club to make improvements to student disability services as well as enriching student life according to the Diversity Innovation Grant EASM.

As an advocate for the disability community, Erica has published essays and op-eds in publications such as ASBMB Today and Scientific American discussing her chronic illness and the needs of the community to spread awareness and reduce stigma. These publications included discussions on the lack of health care options and research into
misunderstood chronic illnesses and what living with a chronic illness is really like. Erica also wrote two essays for the American Chemical Society about focusing on improving
mental health struggles due to the pandemic. Additionally, she’s written for Johns Hopkins Technology ventures to highlight Johns Hopkins students and physicians working on health care and medical tech ventures such as devices for portable oxygen, dialysis, asthma, mental health apps, etc. Erica works closely on projects in collaboration with Johns Hopkins Disability Health Research Center, a center established to address health care disparities, representation in academia, and inclusion in medical and public health research. As one of the main student leaders in the disability community, Erica has often advocated for the health care needs of students to the university administration in meetings and listening sessions. She’s expressed the
feedback from many students that their disability has made them reconsider if they can financially afford graduate education or balance the unreasonable demands and expectations of their degree and not exacerbate their health struggles.

Lessons from the effects of the pandemic on disabled trainees

On behalf of the “JH Needs U” campaign we present “Lessons from the effects of the pandemic on disabled trainees” a listening session and panel event hosted by the EASM committee’s Erica Avery and Nicole Pannullo and moderated by Dr. Bonnielin Swenor, Director of Johns Hopkins Disability Health Research Center. This event was originally held April 13 & 14, 2021, but we chose to only record the first portion. Summary slides of the event presented to the Masters/PhD committee are available above. Thank you to the COVID-19 Wellbeing grant for funding this project. A recording of the event is available here: Attachments – OneDrive (sharepoint.com)

Expanding Accessibility in Neuroscience Through Speech-to-Text Technologies

Dr. Tilak Ratnanather, associate research professor in the Department of Biomedical Engineering at Johns Hopkins University, discusses how speech-to-text technology benefits people with hearing loss in this Society for Neuroscience article.

Disability Health Research Center Webinar: COVID-19 and Disability

Webinar about COVID-19 and Disability featuring Justine “Justice” Shorter, Monica Schoch-Spana, Valerie Novack, and Dr. Bonnielin Swenor. View full video here.

Disability Health Research Center Webinar: 30 Years of ADA

Webinar celebrating the 30th anniversary of the Americans with Disabilities Act featuring Catherine Axe, Gloria Ramsey, Sabrina Epstein, Aaron Hodukavich, and Bonnielin Swenor. View full video here.