Newsletters – Johns Hopkins University Disability Health Research Center

Johns Hopkins Disability Health Research Center
October 2025 Newsletter

Learn more at the Disability Health Research Center website.

If you are interested in supporting the Disability Health Research Center (DHRC), please contact us at [email protected].

Relaunch of DHRC Open Meetings for the JHU Community!

We are excited to announce the relaunch of our bi-monthly virtual meetings beginning in January 2026! These gatherings are designed to share knowledge, build connections, and strengthen collaboration across Johns Hopkins. 

We are putting out a call for presenters!If you are a JHU student, staff member, or faculty conducting work related to disability health, we encourage you to sign up to present at a future meeting. Submit your interest to this Google Form. We hope you will join us in shaping this forum for research exchange, shared learning, and meaningful conversations across the Hopkins community! 

Register for the open meeting series now! A JHU ID is require to register. Real time captioning will be provided. Please email [email protected] for access and accommodation requests.

News

• Happy National Disability Employment Awareness Month (NDEAM) from the DHRC!
• We are excited to share that the DHRC has been awarded funding from the WITH Foundation! We are grateful to the WITH Foundation for their support in helping advance our ongoing efforts to promote disability health equity.
• Congratulations to Victoria Green for successfully defending her dissertation, examining the impact of psychiatric rehabilitation programs among adults with serious mental illness in Maryland: a multi-method study. Congratulation Dr. Green!

Recent Research

• Bonnie Swenor, Henry Claypool, Ariana Aboulafia, Urvish Jain, Rushabh Doshi, Bhav Jain, and Pankaj Jain highlighted how digital health can advance equity for people with disabilities, emphasizing universal design, standardized disability data collection, accessibility as a civil right, and funding incentives that prioritize disability inclusion.
• Bonnie Swenor, Scott Landes, Jean Hall, Anjali Forber-Pratt, Nastassia Vairsiakhovich, Kate Caldwell, Mihir Kakara, Deborah Lefkowitz, Andrew Myers, Susan Popkin, Nicholas Reed, Emily Rothman, and Maggie Salinger examined the “disability mismatch” in U.S. federal surveys, showing how widely used functional limitation questions exclude many disabled people, and demonstrated how a single comprehensive disability status question can provide a more inclusive and accurate measure.
• Research co-authored by DHRC faculty evaluated a SNAP outreach and enrollment assistance program in Michigan, testing whether information alone or information plus support improves enrollment and health outcomes for low-income adults with disabilities.

Events and Recordings

• The 2025 Disability Health Equity Research Network (DHERN) Annual Conference, Global Perspectives on Disability Equity, highlighted global perspectives on disability health equity across research, policy, and practice. This event was supported by the WITH Foundation, Center for Aging and Policy Studies, and the Aging Studies Institute at Syracuse University. Conference recordings are now available on the DHERN website!
• The Buffalo Toronto Public Media featured Drs. Bonnie Swenor and Scott Landes ahead of the 2025 DHERN Annual Conference, spotlighting their leadership in advancing disability data equity. The article emphasized how accurate disability data can shape policy, rights, and health outcomes, and highlighted the importance of centering disabled researchers in data equity efforts.
• Dr. Swenor was appointed to the newly launched Independent Census Scientific Advisory Committee (I-CSAC), which recently held its first public meeting.  This committee, comprised of scientific experts, will provide independent guidance on Census data collection, methodology, and equity.
• The DHRC was designated a member of the WHO Disability Health Equity Network, a World Health Organization (WHO) network for stakeholders promoting collective and coordinated action towards health equity for people with disabilities worldwide. This WHO Network is part of a broader WHO Disability Health Equity Initiative, which is advancing WHO’s goal to close the avoidable health inequities impacting people with disabilities.
• Dr. Bonnie Swenor presented “Measuring What Matters: Why accessibility data is essential to closing the digital divide for people with disabilities” at the 2025 IEEE Connecting the Unconnected North America Regional Summit. The summit brought together leading experts from technology, government, and non-profit sectors to collectively address the multifaceted challenges of the digital divide.
• Anjali Forber-Pratt, Scott Landes, Jean Hall, Jacob Ditsch, and Bonnie Swenor presented at the 2025 American Psychological Association conference on “Advancing Disability Data in the U.S.”.
• The DHRC and Ariana Aboulafia, from the Center for Democracy and Technology, presented “Democracy, Data, and Disability Rights: How Inclusion of People with Disabilities in Technology Benefits Democracy” at the Johns Hopkins Democracy Day 2025. The JHU Democracy Day is an orientation event introducing incoming Hopkins students to the practice and responsibilities of citizenships, highlighting how democratic participation connects Hopkins to the wider world.

Johns Hopkins Disability Health Research Center
July 2025 Newsletter

If you are interested in supporting the DHRC, please contact us at [email protected]

Recent Research

• Drs. Franz Castro, Varshini Varadaraj, Bonnie Swenor, and Jennifer Choi examined healthcare access by disability and race among U.S. adults using national survey data. They found that individuals with disabilities—particularly those identifying as Hispanic—face significant barriers to care, especially due to cost.
• Drs. Erica Twardzik, Bonnie Swenor, and colleagues, examined how systemic racism and ableism intersect to create transportation barriers for Black individuals and people with disabilities, highlighting the need for an intersectional mobility justice framework to advance health equity.
• Caroline Cerilli, Bonnie Swenor, Winnie Liu, Lourdes Carhuapoma,  and Susanne Muehlschlegel examined the presence of ableist language in goals-of-care discussions within a Neurocritical Care Unit, identifying five distinct types of ableist language frequently used by both clinicians and families during these conversations. Their findings underscore the potential for bias in treatment decisions when disability is framed through a limited or negative lens.
• Nastassia Vaitsiakhovich, Scott Landes, Jean Hall, and Bonnie Swenor found that widely used federal disability measures, including the ACS-6 and WGSS, fail to fully capture individuals with intellectual, developmental, mental health, and physical health disabilities—highlighting the need to expand current question sets for more inclusive data.
• Drs. Hanna Barton, Rupa Valdez, Ashley Shew, Bonnie Swenor, and colleagues explored how digital technology design can better serve both disabled people and older adults by centering inclusion, community engagement, and the intersection of aging and disability.
• Dr. Bonnie Swenor, along with an international team of researchers, issued a global call to action to improve disability inclusion in health research. The article emphasizes the need for multi-level strategies to address ongoing exclusion and advance equity in research systems worldwide.
• Drs. Scott Landes, Bonnie Swenor, Jean Hall, and.Anjali Forber-Pratt highlight the risks of abandoning established U.S. standards for measuring disability in federal data collection, underscoring how proposed international methods severely undercount the disabled population and overlook key lived experiences.
• Drs. Bonnie Swenor and Anjali Forber-Pratt contributed to a National Academies workshop that examined how current federal disability measures fail to capture the full spectrum of disability, calling for more inclusive, equity-centered data collection approaches.

Events and Recordings

• Dr. Franz Castro participated in the 2025 Society for Epidemiologic Research Annual Conference, a national conference bringing together researchers and professionals to advance scientific collaboration and innovation in epidemiology.  
• Dr. Varshini Varadaraj presented “Vision Impairment and Healthcare Access Gaps in Older Americans: The Unique Role of Contrast Sensitivity” as a poster at The Association for Research in Vision and Ophthalmology Annual Conference.
• Dr. Bonnie Swenor delivered the keynote lecture for Georgia State University UCEDD’s Endowed Public Health Lecture Series, highlighting the role of data equity in advancing health for people with disabilities.
• The World Health Organization launched the Disability Health Equity Initiative at the 18th session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities at the UN Headquarters. Dr. Bonnie Swenor joined global leaders to highlight the role of academia in advancing disability health equity through research, education, and community engagement.
• Dr. Bonnie Swenor was named a commissioner on the newly launched Lancet Commission on Disability and Health, the first-ever Lancet Commission focused on disability. The Commission aims to close the 14-year life expectancy gap for people with disabilities by generating action-driven evidence and elevating disability as a global health priority.
• The Disability Health Research Center was represented at the UN’s Forum on Science, Technology, and Innovation, as part of ‘Reformingthe Culture of Inclusion in Science for Sustainable Development’ panel. The panel highlighted the role of professionals with disabilities in advancing the SDGs, with a focus on access, employment, and global health equity.

Johns Hopkins Disability Health Research Center
March 2025 Newsletter

We are recruiting participants for a new study!

We are seeking volunteers for a research study to improve the experience and accessibility of making healthcare appointments online. Individuals with one or more disabilities or chronic illness and are 18+ years old may be eligible. If you are interested, complete our short screening survey.

For questions, contact [email protected]. The Principal Investigators for this project are Dr. Theodore J. Iwashyna and Dr. Bonnielin Swenor. The Johns Hopkins Medicine Institutional Review Board has approved of this project under IRB#00463432.

Recent Research

• Grace Jo led the development of Promising Practices for State and Territory Disability Data Collection and Usage in collaboration from the National Governors Association.
• Dr. Franz Castro, Dr. Swenor, and Dr. Javier Robles of Rutgers University outline ways for state-level disability data to be improved and leveraged to improve health for all.
• Our team found that many U.S. nationally representative surveys lack a public plan to collect data in accessible ways, and this leads to barriers for disability data.
• Dr. Swenor, Dr. Varadaraj, and Dr. Castro explored how epidemiology can include disabled people and combat ableism with high quality data.
• Dr. Denis Newman-Griffis, Dr. Swenor, Dr. Valdez, and Gillian Mason reflected on how AI can be used to further disability justice.
• Our research associate Dr. Varshini Varadaraj, along with Jonathan Thomas, Louay Almidani, Pradeep Ramulu, found that older adults with a vision impairment are more likely to fall than those without vision impairment.
• Drs. Amber Davis, Gyasi Burks-Abbott, Octaviano Merecias, and Bonnie Swenor conducted a systematic review on autism interventions adapted or designed for Black children and found a need for more culturally responsive interventions.
• Nastassia Vaitsiakhovich, Scott Landes, Jean Hall, and Bonnie Swenor found that disability status is significantly underreported in U.S. federal surveys.
• Caroline Cerilli led a paper with our team that found universities score poorly for metrics of accessibility and disability inclusion across a range of characteristics.

Updates

• Congratulations to our collaborator Rebecca Rosenberg for appearing on Forbes 30 Under 30 List! We are proud to partner with her to develop a new web app for low vision users.

Events and Recordings

• Tune into an Eye on Vision podcast episode featuring Dr. Varshini Varadaraj and other scholars titled, “Need For Better Predictive Glaucoma Models For Those Of African Extraction and The Association Between Visual Impairment and Glaucoma.”
• Access Dr. Amber Davis’ talk at the Autism Research Institute, “The Intersection of Race and Disability,” today!
• Dr. Varshini Varadaraj spoke at the annual University of Maryland School of Law Journal of Health Care Law & Policy Symposium, “Navigating Healthcare with a Disability.” She joined the panel, “Barriers to Access to Healthcare.”
• The DHRC was excited to support the Docs With Disabilities DREAM Research Rounds events, “Negotiating Legitimacy and Belonging: Disabled Students’ and Practitioners’ Experiences” and “Core Competencies for Students Entering Medical School: A Pan-Canadian Approach to Re-envisioning Technical Standards and Addressing Ableism in Undergraduate Medical Educationr.
• Dr. Varshini Varadaraj participated in the Alzheimer’s Association panel, “Sensory Health and Cognition PIA: The Basics of Vision and its Relationship with Cognition and Dementia,” along with colleagues Walter Wittich, Kathy Pichora-Fuller, Willa D. Brenowitz and Marianne Coleman.
• Dr. Franz Castro moderated the Consortium of Universities for Global Health panel, “Advancing Health Equity for People with Disabilities in Global Health.”
• Dr. Varshini Varadaraj participated in the panel, “Review of Standards for Visual Field Perimetry Devices and Their Use in Disability Evaluations” hosted by National Academies of Science, Engineering, and Medicine, recorded here!
• Dr. Bonnie Swenor participated in a panel for the AAAS Annual Meeting titled, “Disability Inclusion, Accessibility, and Anti-Ableism in STEMM.”
• View the recording to the Disability Health Equity Research Network 2024 Paper Award Winner Presentations!
  • The winning papers are. “Repeal of Subminimum Wages and Social Determinants of Health Among People With Disabilities.” by Kakara, Mihir, Elizabeth F. Bair, and Atheendar S. Venkataramani and “Inequities in Medicaid home-and community-based services waiver enrollment among people with intellectual and/or developmental disabilities: A nationwide claims-based analysis.” by Levine, A. Alex, Megan B. Cole, Amy Lynn Michals, Na Wang, and Eric Rubenstein.

Johns Hopkins Disability Health Research Center
October 2024 Newsletter

Updates

• Luanjiao (Aggie) Hu, who completed a postdoctoral fellowship at the DHRC, has published her first book, “Inclusion, Exclusion, Agency, and Advocacy: Experiences of Women With Physical Disabilities in China, With Worldwide Implications”! She goes in depth with six women, including herself, about their lives. Congratulations, Luanjiao!

Opportunities

• The National Academies of Sciences, Engineering, and Medicine (NASEM) is accepting nominations for a consensus study, Workplace Barriers, Solutions and Policies for STEM and STEM Education Professionals and Postsecondary Students with Disabilities, through November 15^th.
• The National Institutes of Health (NIH) will be hosting a series of discussions to gather feedback on a new cross-agency disability research strategic plan. The virtual roundtables and townhalls are open to the public.
• The Government Accountability Office has developed a survey to obtain the lived experiences of people with disabilities regarding the barriers they’ve faced trying to access healthcare. Caretakers can also answer the survey on behalf of the person they care for. Stories will be incorporated in a report. The survey will be open until November 30, 2024.

Events and Recordings

• October 30^th: Join the upcoming committee meeting of a study reviewing standards for visual field perimetry tests and their use in disability evaluations, and tune in at 9:15am for a panel with Dr. Varshini Varadaraj focused on disparities and opportunities in access to vision testing!
• You can tune in now to IFA Global Café’s podcast featuring Dr. Varshini Varadaraj, focused on aging with vision loss and improving access to care!
• The Disability Health Equity Research Network, co-led by Drs. Scott Landes and Bonnie Swenor, hosted its second annual virtual conference on “Moving Disability Measurement Forward.” Tune in to the recordings now!
• Our director, Dr. Bonnie Swenor, spoke at a White House Office of Science and Technology Policy (OSTP) convening Advancing Digital Accessibility for Scientific and Technical Publications.
• Dr. Bonnie Swenor participated in the September 30^th Convening on Disability Measurement hosted by the US Census Bureau, OMB, NCHS, NCD, The Leadership Conference Education Fund, and the Consortium for Constituents with Disabilities’ Health Task Force. Check out the recorded meeting and blog from the Census Bureau Director, which gives a recap and next steps.
• The National Academies of Sciences, Engineering, and Medicine (NASEM) hosted a workshop, Health and Disability Among Working-Age Adults, featuring presentations from Dr. Bonnie Swenor and DHRC collaborators.

Our Research

• A new scoping review led by Dr. Amber Davis explores resilience and strengths in the Black autism community.  
• Review the past 12 months of advancements made for disability health equity research and how we can continue pushing forward in this new commentary from Drs. Scott Landes and Bonnie Swenor.
• A new article lead by Dr. Lisa Meeks gives an overview of the history of disability representation in STEM, present day barriers, and how we can make science more inclusive for all.
• Analysis of one-on-one interviews highlights systematic barriers researchers with disabilities face and how we may create more inclusive environments. The authors include Franz Castro, Caroline Cerilli, Luanjiao (Aggie) Hu, Lisa Iezzoni, and Bonnie Swenor.
• The Washington Group Short Set questions to measure disability has been found to significantly undercount both blind and deaf adults as disabled in a new paper by Drs. Landes, Hall and Swenor.
• New research supports considering vision health in dementia prevention strategies, and authors include Dr. Varadaraj, Deal, and Swenor.