When you walk down the halls of your hospital or research building, how many providers/researchers do you see using a wheelchair? Will the building even accommodate working from a wheelchair? On rounds, is there anyone with an oxygen concentrator? Have you ever had a deaf member of your laboratory team? Every disability is different, and not all are obvious, but all create hurdles. They also create opportunities for enrichment.
Both medicine and science have a disability problem. Information on the prevalence of disabilities is based on self-reported census data. Estimates for the percentage of adults under age 65 with a disability range from 13.3% (employed) to 24% (total). So, where are these individuals in hematology? The short answer is largely absent. A recent survey of 6,000 physicians found only 3.1% reporting a disability.1 Extrapolating data from the National Science Foundation, only 2.8% of the total STEM workforce and 1.1% of funded scientists and engineers self-reported at least one disability.2 Recent NIH data also show that the rate of funded investigators with disabilities decreased from 2% to 1.3% from 2008 to 2022.3
What can explain this drastic difference from the general population? Generally, barriers to studying science or medicine arise from a lack of role models/mentors and the difficulty of obtaining accommodations. Those who develop disabilities later in their careers often have their careers cut short. This brain drain is tragic for financial reasons (i.e., the cost of education and training), but the bigger impact is the loss of potential and insights. Part of this problem may inadvertently be caused by the legal framework designed to protect the rights of those with disabilities.
The Americans with Disabilities Act (ADA) of 1990 prohibits discrimination because of disability in employment, state and local government programs, public accommodations, commercial facilities, transportation, and telecommunications. Despite accomplishing many of its goals, this law has major weaknesses as it applies to employment. Title I of the ADA prohibits employers from discriminating against qualified individuals with disabilities in hiring, firing, advancement, compensation, job training, and other privileges of employment. The ADA lets employers establish standards for designating an employee or potential employee a “direct threat” (defined as a “significant risk of substantial harm to the health and safety of the individual or others if, and only if, that risk cannot be eliminated or reduced by reasonable accommodation”). Deciding that an employee is a “direct threat” must be based on an individual assessment of that employee, based on the best available medical or other objective evidence.
Furthermore, what is considered a reasonable accommodation is not clearly defined and is largely based on legally established precedents from other cases. Requesting accommodation is, at most institutions, a lengthy and complicated process often requiring legal guidance paid for by the person with the disability. NIH supplements for those with grants are available to defray the cost. Otherwise, the employer must pay for the accommodation — a significant financial disincentive for hiring or retaining a worker with a disability.
Enforcement of the law is also dependent on legal action by the person with the disability. Suing your potential or actual employer is not an ideal way of advancing your career. If discrimination because of a disability occurs, the target must first file a job discrimination complaint with the Equal Employment Opportunity Commission within 180 days of the event and then file a job discrimination lawsuit against that employer. Thus, the provisions of the ADA create an adversarial rather than collegial relationship between the employer and employee. The language used significantly contributes to a less-than-ideal relationship. Imagine that, after a severe accident or illness, you are informed that you are a “direct threat” to your patients or to your students, fellows, and technicians in your laboratory. When dealing with all the consequences of a severe accident or ongoing illness, protecting your legal rights during the 180-day time frame is frequently not your priority. Even if you do decide to file a complaint, identifying a disability lawyer may be difficult, as most disability lawyers deal with the Social Security Administration, not employers.
Some institutions have embraced the spirit of the ADA and have increased the number of students/trainees and faculty with disabilities. Making laboratories accessible, for example, removes one barrier. Universal laboratory design — a method in which the workspace is designed to be usable by most people, regardless of disability status — incorporates the most common accommodations, such as adjustable-height fume hoods and automatic doors. This proactive approach removes the burden of having to ask for accommodation. However, for many institutions, the response to the ADA is a map of buildings with wheelchair access and extra time for students to take exams. It is left up to the person with the disability to apply for and negotiate every step of their education and career.
Thus, it is not surprising that there are so few with disabilities in hematology. What can you do as a hematologist? Be aware, and be empathetic. If you know a student or trainee with a disability who is interested in hematology, help them navigate through the institutional hierarchy to get the accommodations they need. If a colleague has a health care problem, do the same thing. If they do not want your help, they will thank you and say no. You are not intruding; you are being human. They will remember and appreciate your kindness. What can ASH do? ASH has a number of initiatives (listed below) to help those with disabilities as well as those who want to learn more.
Educational Resources: The ASH Diversity, Equity, and Inclusion (DEI) toolkit highlights health care inequities and provides resources for ASH member clinicians, researchers, and educators. This toolkit includes resources on the disability community, including respectful language.
Networking Opportunities: In 2022 and 2023, ASH held a Disability Community Networking Breakfast at the ASH annual meeting with members of the disability community and representatives from the ASH DEI Programs Subcommittee to learn how ASH can be more inclusive of community members.
Visibility at the Annual Meeting: ASH has added a new ribbon for the disability community and community allies: “Accessibility for All.”
Accessibility at ASH meetings: ASH is committed to offering an inclusive meeting environment for all participants, including a focus on making in-person, annual, and virtual meeting platforms accessible for everyone. Learn more at hematology.org/meetings/annual-meeting/meeting-and-presenter-resources/resources-for-the-disability-community.
Call to Action
To continue the conversation and learn more about how ASH is working to be a champion of accessibility for all, join our email group at https://hematology.questionpro.com/disabilitycommunitysignup.
Drs. Vogelsang and Sadler indicated no relevant conflicts of interest.