Allison Nguyen, PharmD | Clinical Advisor
Health care workers with disabilities face significant challenges, such as employment discrimination, lack of accessibility, and ableism.
Nurses constitute the largest group of health care professionals in the US, and the demand for nurses to join the workforce has consistently increased.1,2 While the nursing profession promotes health and well-being, health care systems frequently neglect the needs of its workers, especially those with disabilities.
Health care workers with disabilities face significant challenges, such as employment discrimination, lack of accessibility, and interpersonal ableism. According to the 2024 US census, approximately 13.4% of the US population lives with a disability, underscoring the importance of raising awareness to reduce barriers.3 These perspectives were further examined at the “We Belong Here—Disability Advocacy in Nursing” Equity Panel hosted at the DNPs of Color annual conference, held in Philadelphia, PA, October 17-20, 2024.
Andrea Dalzell, MSN-ed, BS, RN, also known as the Seated Nurse, is the first registered nurse to complete nursing school using a wheelchair in New York State. In this panel, Ms Dalzell discusses her perspective as someone with an apparent disability, while Sabrina Jamal-Eddine, PhD, RN, discusses barriers of navigating the health care space with a non-apparent disability. Dr Jamal-Eddine is a disabled nurse scientist who researches ableism in nursing education and practice. She speaks from her lived experience of navigating undergraduate and graduate nursing education with a permanent physical disability related to a connective tissue disorder and having undergone multiple 12-level posterior spinal fusions.
Americans With Disabilities Act
The Americans with Disabilities Act (ADA) was enacted in 1990, prohibiting discrimination against people with disabilities in employment, transportation, public accommodations, state and local government services, and telecommunications.4,5
Title I of the ADA prohibits private businesses, educational institutions, employment agencies, labor organizations, and state and local government entities with 15 or more employees from discriminating against individuals with disabilities. This section of the ADA also requires that employers provide reasonable accommodation to employees with disabilities.6
Title II of the ADA protects the rights of people with disabilities from discrimination in state and local government services, programs, and activities. This section pertains to all state and local government entities, regardless of the number of people employed.2
In addition to the ADA, other important laws that protect individuals with disabilities in employment processes include the Rehabilitation Act, Workforce Innovation and Opportunity Act, Vietnam Era Veterans’ Readjustment Assistance Act, and Civil Service Reform Act.2
Employment Barriers Faced by Nurses With Disabilities
While many laws exist to protect the rights of people with disabilities in all employment-related processes, significant barriers continue to persist.
Somewhere down the line, disability now is synonymous with unhealthy disability. It leads to questions like – How do you do CPR? How do you ambulate a patient?
Ms Dalzell, who has used a wheelchair since the age of 12, was inspired to pursue nursing after noticing a lack of representation of nurses with disabilities, despite being in the care of a wide range of nurses throughout her life. Although nursing has been a growing profession, Ms Dalzell received 76 rejections from nursing positions, while her peers did not face issues gaining employment.
“Somewhere down the line, disability now is synonymous with unhealthy disability. It leads to questions like – How do you do CPR? How do you ambulate a patient?” Ms Dalzell said.
Ms Dalzell persevered through these obstacles and ultimately achieved her goal of working as a nurse at the peak of the COVID-19 pandemic in New York City, where the governor had urgently called on all nurses for support. Through her experiences as a patient and her professional training, Ms Dalzell was able to guide and support other nurses in areas where her unique perspective proved invaluable. “There’s so much we don’t learn that people living with disabilities know more than anyone else,” Ms Dalzell said.
While people with apparent disabilities face many upfront barriers to employment, those with non-apparent disabilities face other unique obstacles. Dr Jamal-Eddine remarked, “People don’t view me as a disabled person. It’s a coming out process where you constantly have to prove that you are disabled, that you still belong in nursing, and that you are no more of a liability than anyone else.”
Title I of the ADA prohibits employers from asking job applicants about the “existence, nature, or severity of a disability,” placing the responsibility on individuals to disclose their disabilities in order to receive accommodations.6
However, Dr Jamal-Eddine highlighted the need for a more collaborative effort within the health care system to create accessible spaces for people with disabilities. Health care systems should automatically incorporate certain accommodations to ensure accessibility. For example, facilities should be intentionally designed with enough space for wheelchairs and hospitals should invest in equipment like ramps and adjustable chairs. “If you’re accommodating for disabled nurses, you’re going to build in accessibility for disabled patients as well,” Dr Jamal-Eddine said. This approach would alleviate the burden on nurses to disclose certain disabilities to receive necessary support.
“A lot of it is just about innovating,” said Dr Jamal-Eddine, “It takes time, it takes energy, and it takes money, but we are entitled to accommodations like anyone in any other job is.”
Disability Rights vs Disability Justice
Dr Jamal-Eddine explains that it is essential to understand the differences between disability rights and disability justice to be an effective advocate for individuals with disabilities. While disability rights are in place to protect individuals with disabilities in all stages of the employment process, laws are not always practiced and many marginalized groups within the disability community face barriers to equity.
If you’re accommodating for disabled nurses, you’re going to build in accessibility for disabled patients as well.
“They expect you to file a lawsuit if you experience ableism in nursing education,” said Dr Jamal-Eddine, “But who is economically privileged enough to file the lawsuit? Usually not poor people of color. So that’s why people are not making it through and are experiencing multiple barriers.”
Moreover, filing a complaint within the health care system can jeopardize future career opportunities. “You’re blackballing yourself, but opening the door for the next person,” Ms Dalzell said.
Disability rights typically benefit privileged groups and tend to neglect marginalized individuals within this space. Disability justice, however, is a movement that views this issue through an intersectional lens, aiming to secure rights for all people with disabilities.7
“They expect you to file a lawsuit if you experience ableism in nursing education,” said Dr Jamal-Eddine, “But who is economically privileged enough to file the lawsuit? Usually not poor people of color. So that’s why people are not making it through and are experiencing multiple barriers.”
Moreover, filing a complaint within the health care system can jeopardize future career opportunities. “You’re blackballing yourself, but opening the door for the next person,” Ms Dalzell said.
Disability rights typically benefit privileged groups and tend to neglect marginalized individuals within this space. Disability justice, however, is a movement that views this issue through an intersectional lens, aiming to secure rights for all people with disabilities.7
“You can’t only depend on law to create change,” said Dr Jamal-Eddine, “You need to teach people that disabled humans matter. Disability Matters. We are valuable people.”
Lack of Training on Disability for Health Care Professionals
Health care providers play an integral role in diagnosing and caring for patients with disabilities, making them responsible for determining who is qualified to receive certain services.
“Disability is something that is placed under the jurisdiction of medicine,” Dr Jamal-Eddine said. “Doctors and nurses become the gatekeepers of disability and decide who has access to the social services, assistive devices, and accommodations we need to survive.” Consequently, health care providers must receive comprehensive education on caring for patients with disabilities.
Both panelists acknowledge a lack of didactic education and clinical training in nursing programs on caring for patients with disabilities. Additionally, the US Surgeon General and World Health Organization (WHO) have advocated for increased training on disability for physicians.8,9 Despite this call to action, approximately half of US medical schools report having disability awareness as part of their curriculum.10
Increasing disability education for health care professionals can change perspectives and reduce biases against patients with disabilities. Dr Jamal-Eddine said that in her research she has found that many “health care providers automatically believe that disabled people have no quality of life – that disability is worse than death.”
Increased representation in the nursing workforce can also help shift the narrative for a patient’s understanding of disability. “How does the patient know that life goes on if there’s no representation?” Ms Dalzell said.
Actionable Requests From the Panelists
Ms Dalzell urged nurse educators to review their syllabi and foster a safe environment for students, rather than dismissing their needs. “Stop directing students to just go to their disability office,” she said. “Let them feel comfortable to come and speak to you… you’re allowing that person to decide how much trust they want to put into you, without feeling like it’s going to be used against them.”
Ms Dalzell also called on employers to “understand the difference between technical standards and a job description.” Many nursing programs list functional ability domains, requiring students to be able to lift 25 pounds, navigate confined spaces, and stand for extended periods. These requirements favor able-bodied individuals and limit nurses with disabilities from joining the workforce, despite being able to complete these tasks with reasonable accommodations.
Dr Jamal-Eddine asked that health care systems think of innovative solutions for nurses with disabilities, stating “We’re creative nonstop because we are constantly figuring out how to navigate a society that is not designed for us.” She also called on institutions to “trust disabled people – we’re not asking for things that we don’t need.”
Disclaimer: The quotes included in this article have been revised for clarity and length.
References:
Nursing Workforce Fact Sheet. American Association of Colleges of Nursing. Updated April 2024. Accessed November 21, 2024. https://www.aacnnursing.org/news-data/fact-sheets/nursing-workforce-fact-sheet
Office of Disability Employment Policy. Employment Laws: Disability & Discrimination. US Department of Labor. Accessed November 21, 2024. https://www.dol.gov/agencies/odep/publications/fact-sheets/employment-laws-disability-and-discrimination
United States Census Bureau. Anniversary of Americans With Disabilities Act: July 26, 2024. Accessed November 22, 2024. https://www.census.gov/newsroom/facts-for-features/2024/disabilities-act.html
25th Anniversary of the Americans with Disabilities Act. National Archives. Reviewed July 26, 2022. Accessed November 21, 2024. https://www.archives.gov/calendar/ada25#
US Department of Labor. Americans with Disabilities Act. Accessed November 24, 2024. https://www.dol.gov/general/topic/disability/ada
US Equal Employment Opportunity Commission. Fact sheet: disability discrimination. Accessed November 24, 2024. https://www.eeoc.gov/laws/guidance/fact-sheet-disability-discrimination
World Institute on Disability. Moving from disability rights to disability justice. Accessed November 24, 2024. https://wid.org/moving-from-disability-rights-to-disability-justice/
Office of the Surgeon General (US); Office on Disability (US). The Surgeon General’s call to action to improve the health and wellness of persons with disabilities. Rockville (MD): Office of the Surgeon General (US); 2005
World Health Organization. World Report on Disability 2011. Published December 14, 2011. Accessed November 21, 2024. https://www.who.int/publications/i/item/9789241564182
Seidel E, Crowe S. The state of disability awareness in American medical schools. Am J Phys Med Rehabil. 2017;96(9):673-676. doi:10.1097/PHM.0000000000000719
