News – Johns Hopkins University Disability Health Research Center
Using data-driven approaches to shift the paradigm from ‘living with a disability’ to ‘thriving with a disability.
News
CDT Report Recognized by the 2025 Anthem Awards
To Reduce Disability Bias in Technology, Start With Disability Data — coauthored by Ariana Aboulafia, Miranda Bogen, and Bonnielin Swenor— was awarded a Silver Anthem Award in the Responsible Technology // Research Projects or Publications Awareness category.
The report illustrates how building less discriminatory algorithmic tools and AI systems requires more inclusive datasets, and unpacks the structural factors that contribute to poor disability data collection. The authors outline the importance of respectful privacy practices and inclusive methods for defining and collecting disability data using a “disability data justice” framework.
This recognition highlights the growing need for stronger disability representation in data used across employment, healthcare, benefits systems, and other high-stakes technologies — and affirms the report’s contribution to shaping disability-inclusive technology policy.
Past news
2025
Dr. Varshini Varadaraj served as a co-organizer for the 2025 Sense Network Consensus Conference on Sensory Aging, Cognition & Wellbeing. This Conference was a two-day event designed to build consensus of research priorities, address current knowledge gaps, and identify actionable next steps in the field of sensory aging, cognition, and well-being.
Dr. Franz Castro participated as a panelist at the Public Responsibility in Medicine and Research Conference. The session “Inclusive Informed Consent: Engaging People with Disabilities in Research Participation” explored the challenges to including people with disabilities in research and offered approaches to foster participation.
Feels Like Home” is a moving documentary that follows three families raising children with disabilities and complex medical needs, showing the daily challenges of making their homes truly supportive.
The project was led by Dr. Rebecca Seltzer (Johns Hopkins University School of Medicine) and Dr. Lauren Arora Hutchison (iDeas Lab, Johns Hopkins Berman Institute of Bioethics), with contributions from Dr. Bonnie Swenor at the Disability Health Research Center (DHRC).
You can learn more about the families, host a screening, or support home modifications on the Feels Like Home website
Research Study to Improve the Experiences and Accessibility of Making Healthcare Appointments Online
Posted on by lshahba1
We are seeking study participants for virtual interviews who:
- Have a disability or chronic illness; and
- 18+ years old
Complete the screening survey: tinyurl.com/RAMPScreen
Principal Investigator: Theodore J. Iwashyna
Questions? Email [email protected]
JHM IRB00463432 Bonnielin Swenor
2024
Posted on by ccerill1
Join us for the Johns Hopkins Disability Health Research Center Seminar Series in Disability Health Research!
Seminars are hosted on Zoom every Thursday from April 4 to May 9 from 3:30pm-4:30pm ET. Registration is required. CART and ASL interpretation will be provided.
We are excited to host disability health experts each week!
- April 4, Maria Town, President and CEO, American Association of People with Disabilities
- April 11, Alison Cernich, PhD, Deputy Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
- April 18, Anjali Forber-Pratt, PhD, Director, National Institute on Disability, Independent Living, and Rehabilitation Research, Invited Guest
- April 25, Scott Landes, PhD, Associate Professor, Syracuse University
- May 2, Lydia X. Z. Brown, Director, Public Policy at the National Disability Institute
- May 9, Rupa Valdez, PhD, Professor, University of Virginia
Please email [email protected] for accessibility accommodations or questions. View the 2023 Seminar Series here.
2023
Posted on July 18, 2023 by ccerill1
Register here to join the Johns Hopkins Congressional Briefing on Disability held on Thursday, July 20th at noon ET, moderated by the Disability Health Research Center Founder and Director, Dr. Bonnie Swenor. Johns Hopkins is hosting a series of congressional briefings, and you can learn more here. This event features a panel including:
- Judy Bass, PhD, MPH, Professor, Johns Hopkins Bloomberg School of Public Health
- Linda Carling, EdD, Associate Research Professor, Johns Hopkins School of Education
- Jack Iwashyna, MD, PhD, Bloomberg Distinguished Professor of Social Science and Justice in Medicine, Professor, Johns Hopkins School of Medicine
- Jennifer Deal, PhD, Associate Professor, Johns Hopkins Bloomberg School of Public Health
- Janiece Taylor, PhD, MSN, RN, Assistant Professor, Johns Hopkins School of Nursing
Discussion topics include: mental health, long COVID, accessibility within education, individuals with disabilities in clinical trials and research studies, and the needs of caregivers with disabilities.
Posted on July 18, 2023 by ccerill1
Next Thursday, July 27th from 1:00 to 1:00 PM ET, The Social Security Administration (SSA) is hosting a virtual roundtable discussion about how the disability determination process could be improved.
The session will be opened by the SSA Commissioner, followed by a panel discussion and Q&A.
An invitation from the SSA is below.
——–
Dear Colleague,
We cordially invite you to our Quarterly Roundtable Discussion with SSA and the Advocacy Community. The next meeting will be held on Thursday, July 27, 2023, from 1:00 p.m. to 3:00 p.m. ET via Microsoft (MS) Teams.
To participate, please register by Monday, July 24, 2023. After we receive your registration, you will receive an email with the MS Teams information. You may submit topics for consideration during registration. Topics submitted during registration may be addressed during the call by our presenters or considered for future discussions.
We hope you can join us, and we look forward to your participation. For questions or comments about this event, please contact us at [email protected].
Sincerely,
Dawn Bystry
Acting Associate Commissioner
Office of Strategic and Digital Communications
Posted on June 26, 2023 by ccerill1
Beginning June 5th, 2023, the Disrupting Ableism and Advancing STEM Summit, led by the National Academies of Science, Engineering, and Medicine, addressed disability inclusion and access in the sciences.
Five videos are available, including the initial in-person event, Creating Disability-Inclusive Workforces and Workplaces, Fostering Effective Mentorship in the STEM Ecosystem, Cultivating Accessible Educational Pathways and Spaces, and Rooting out Bias and Barriers.
Posted on April 19, 2023 by ccerill1
Announcing the Johns Hopkins Disability Health Research Center Public Transit #DisabilityDashboard
Public transit websites can help ensure people with disabilities have equitable access to transportation. Online information about transit accessibility features and rider accommodation options is necessary for many people with disabilities to plan and prepare for transit travel. But too often, this information is not available or is not accessible.
The Public Transit #DisabilityDashboard evaluates information available on public transit system websites that people with disabilities may need to plan transit travel. This includes assessing if transit system websites have information on facility and vehicle accessibility features, policy and planning procedures, rider accommodation processes, and paratransit services. Although these data do not represent individual experiences, such as real-time elevator outages, this dashboard provides insight into the barriers people with disabilities face when planning transit trips.
This dashboard includes data from the top 26 U.S. transit systems receiving the most federal funding.We found that information and accessibility varied widely across these transit system websites. These data intend to highlight areas for improvement and help identify best practices. This dashboard also outlines a need for real-time and standardized data on the accessibility of transit systems.
Details about the scoring methodology and resources can be found on the dashboard.
Follow us @JHUDisability or via the Disability Health Research Center website for updates on this project and our work.
Many thanks to our partners at WebAIM and the dedicated Johns Hopkins Disability Health Research Center team, led by Dr. Erica Twardzik, behind this effort!
Posted on March 27, 2023 by ccerill1
Toolkit Flyer
Alt text: Flyer for the Toolkit for Developing Accessible Scientific Meetings and Conferences by the Disability Health Research Center and the International Network of Visually Impaired Scientists and their Allies. Includes tips for as you plan, at the event, and what to require from presenters.